From fc1be24b4d637fa98e7bba2c3a29be330efb2882 Mon Sep 17 00:00:00 2001 From: Shaun Date: Sun, 3 May 2026 17:31:05 -0700 Subject: [PATCH 1/5] add IRR pilot sampling-methodology docs (300 + 500) MIME-Version: 1.0 Content-Type: text/plain; charset=UTF-8 Content-Transfer-Encoding: 8bit Two parallel sampling-methodology documents for the inter-coder reliability pilots that validate the AI sentiment-extraction pipeline. Both follow the same structure (source corpus → codable pool → stratification with enrichment → blinding → reproducibility) so the two pilots are easy to compare side-by-side. Until now the IRR work has lived entirely outside git, distributed via S3 presigned URLs. The data folders (data/irr_pilot/, data/irr_pilot_500/) are gitignored and that is correct — they hold large CSVs, JSON, and DBs. But the methodology documents themselves are pure narrative and do belong in version control. Putting them under docs/ matches the existing pattern (docs/RCT_historical_validation/, docs/DATA_NOTES.md, docs/ldn_notes.md). docs/irr_pilot/SAMPLING_METHODOLOGY.md (300-sample, original): - Source: 1,081 posts + 16,342 comments from r/covidlonghaulers, 2026-03-11 -> 2026-04-10 (30-day window) - Codable pool: 9,930 units after the 100-800 char filter - Stratification: 50/30/20 -> 150 ai_found_drug + 90 keyword_match + 60 random; ai_found_drug stratum is ~1.8% of the codable pool - Seed 42 docs/irr_pilot_500/SAMPLING_METHODOLOGY.md (500-sample, follow-up): - Source: full r/covidlonghaulers history (Arctic Shift), restricted to Nov-Dec 2021 (2,739 posts + 39,559 comments) - Codable pool: 22,915 units after the 100-800 char filter - Stratification: 50/30/20 -> 250 ai_found_drug + 150 keyword_match + 100 random; ai_found_drug stratum is ~12% of the codable pool - Seed 43 (deliberately differs from the 300-pilot's seed=42) - Includes a tighter paper-ready prose version below the reference doc, which can be lifted into a Methods section verbatim Both pilots use the same scripts/sample_for_coding.py, the same max_upstream_depth=2 cap on parent context, and the same blinding (stratum membership in analyst-only ai_labels.csv). Co-Authored-By: Claude Opus 4.7 (1M context) --- docs/irr_pilot/SAMPLING_METHODOLOGY.md | 178 +++++++++++++++++ docs/irr_pilot_500/SAMPLING_METHODOLOGY.md | 218 +++++++++++++++++++++ 2 files changed, 396 insertions(+) create mode 100644 docs/irr_pilot/SAMPLING_METHODOLOGY.md create mode 100644 docs/irr_pilot_500/SAMPLING_METHODOLOGY.md diff --git a/docs/irr_pilot/SAMPLING_METHODOLOGY.md b/docs/irr_pilot/SAMPLING_METHODOLOGY.md new file mode 100644 index 0000000..438b539 --- /dev/null +++ b/docs/irr_pilot/SAMPLING_METHODOLOGY.md @@ -0,0 +1,178 @@ +# IRR Pilot 300 — Sampling Methodology + +This document describes how the original 300-unit inter-coder reliability (IRR) +sample in this directory was drawn. It applies to the files in this folder: + +- `coding_input.csv` — the 300 sampled units, distributed to coders +- `ai_labels.csv` — analyst-only file with stratum labels and AI-pipeline output + for each sample +- `coder_output_template.csv` — empty form for coders to fill in +- `CODING_INSTRUCTIONS.md` / `CODING_INSTRUCTIONS.pdf` — codebook distributed + alongside the coding sheet +- `reading_packet.html` — the same 300 samples rendered as browser-readable + cards (max 2-hop upstream chain per comment) +- `irr_pilot_for_coders.zip` — combined coder-facing bundle + +This is the *original* IRR pilot. A larger 500-unit pilot was drawn later +under the same procedure with `seed=43`; see +`data/irr_pilot_500/SAMPLING_METHODOLOGY.md`. The two pilots cover +non-overlapping windows of r/covidlonghaulers and use different seeds, so no +codable unit can appear in both. + +Reproducibility script: `scripts/sample_for_coding.py` (in the project +repository). + +## Source corpus + +We scraped one month of r/covidlonghaulers posting history into a single JSON +file: + +- `~/OneDrive/Documents/Projects/PatientPunk_data/subreddit_posts_month_1081posts.json` + — 1,081 top-level posts and 16,342 comments + +The window covered is **2026-03-11 20:02 UTC through 2026-04-10 21:06 UTC** +(30 days). Comments are nested inside their parent post in the JSON; +comments whose parent post fell outside the scrape window were never pulled +in the first place, so no orphaned reply lacks its conversational context. + +## Codable pool + +Posts and comments were classified as "codable" if their body text was between +100 and 800 characters. The lower bound excludes one-line comments that lack +sufficient context for coding; the upper bound caps the cognitive load on human +coders. For comments, the parent context (up to 2 hops upstream) was retained +alongside the comment body — matching the AI pipeline's `max_upstream_depth=2` +setting, so coders see exactly the same upstream context the AI saw. + +After this filter, the codable pool contained 9,930 units (474 top-level posts ++ 9,456 comments), broken down as: + +- 183 units where the AI pipeline already extracted at least one drug mention +- 2,327 units where the AI found nothing but a regex of common medication terms + matched the body text +- 7,420 units where neither the AI nor the regex matched + +## Stratification with enrichment + +A simple random sample of patient narratives is dominated by posts that mention +no drugs at all. Such posts produce trivial perfect agreement among coders +("no drug here") and provide little signal about pipeline reliability on the +analyses that matter. To stress-test the pipeline more efficiently, we drew a +stratified random sample with three strata, weighted to oversample the +analysis-relevant cases: + +| Stratum | Definition | Share | Target n | Achieved n | +|---|---|---|---|---| +| `ai_found_drug` | AI pipeline extracted at least one drug mention from the unit | 50% | 150 | 150 | +| `no_ai_drug_keyword_match` | AI found no drug, but a regex of common medication terms matched | 30% | 90 | 90 | +| `no_ai_drug_random` | Neither the AI pipeline nor the regex matched | 20% | 60 | 60 | + +Each stratum tests a different aspect of pipeline behavior: + +- The `ai_found_drug` stratum tests **precision** and sentiment agreement: when + the AI flags a drug mention, do humans agree it is a drug, and do they agree + on the personal-use, sentiment, and signal-strength labels? +- The `no_ai_drug_keyword_match` stratum tests **recall**: of posts that look + pharmacologically relevant on a coarse heuristic, how many drug mentions is + the AI missing? +- The `no_ai_drug_random` stratum tests **specificity**: when the AI flags + nothing and there are no obvious medication keywords, do humans confirm "no + drug here"? + +Within each stratum, units were drawn uniformly at random using +`random.sample()` with `seed=42`. The seed is fixed for reproducibility; the +later 500-sample pilot used `seed=43` so the two samples could share a source +corpus without overlapping. The three strata were concatenated and shuffled +together before assignment of sample IDs, so coders cannot infer a unit's +stratum from its position in the coding sheet. + +## Stratum proportions are deliberately non-representative + +The 50/30/20 weighting is chosen for analytical efficiency, not for +representativeness of the underlying corpus. In the actual codable pool, the +AI-found-drug stratum is **roughly 1.8% of units (183 of 9,930)**; we +upweighted it to 50% so that per-drug agreement statistics have meaningful +sample size. + +Inter-coder reliability statistics from this pilot should therefore be +interpreted as **conditional on stratum membership**: + +- The α for the AI-found-drug stratum (n = 150) estimates pipeline reliability + on the units that contribute to per-drug aggregations in downstream analyses. +- The α for the keyword-match stratum (n = 90) is diagnostic for pipeline + recall. +- The α for the random stratum (n = 60) is diagnostic for pipeline + specificity, and is dominated by trivially-agreed-on negatives ("no drug + here"). + +When citing IRR for per-drug aggregation results in downstream analyses, the +most relevant subsample is the `ai_found_drug` stratum, not the unweighted +full sample. + +## Sample identifiers and coder blinding + +Each sampled unit was assigned a sequential identifier of the form +`irr-pilot-NNN` (zero-padded to three digits). Stratum membership is recorded +in `ai_labels.csv`, which is **analyst-only** and not distributed to coders. + +The materials distributed to coders (`coding_input.csv` plus the codebook in +`CODING_INSTRUCTIONS.md` / `.pdf`, optionally bundled as +`irr_pilot_for_coders.zip`) contain only: + +- The unit's body text +- The parent context (for comments — up to 2 hops upstream) +- The post date +- A blank coding template + +Coders see no AI labels, no stratum labels, and no other metadata that would +permit them to anticipate the AI's output for a given unit. + +## Date range of the sample + +| Property | Value | +|---|---| +| Earliest unit | 2026-03-11 | +| Latest unit | 2026-04-10 | +| Span | 30 days | +| Total samples | 300 | + +## Pipeline outputs underlying stratum membership + +The pipeline outputs used for stratification live in the project's standard +locations rather than a per-pilot `source/` subdirectory: + +- `data/patientpunk.db` — SQLite database with the pipeline's + `treatment_reports` table for this 1-month corpus +- `data/drug_pipeline/tagged_mentions.json` — per-entry list of drug names + extracted from each post or comment +- `data/drug_pipeline/canonical_map.json` — raw-name → canonical-name mapping + used to canonicalize the extracted mentions + +The pipeline that produced these outputs is the same pipeline whose +classifications appear in the historical-validation analyses; the LLM models +used were `anthropic/claude-haiku-4.5` (fast model, used for prefiltering and +routine extraction) and `anthropic/claude-sonnet-4.6` (strong model, used for +classification of (entry, drug) pairs that pass the prefilter). + +For consistency with the AI pipeline's `max_upstream_depth=2`, AI labels in +`ai_labels.csv` are filtered to only those (post, drug) pairs that a +depth-capped pipeline run would produce — drugs inherited from ancestors more +than 2 hops upstream are excluded so the human↔AI comparison stays apples-to- +apples. + +## Reproducibility + +Re-running + +``` +python scripts/sample_for_coding.py \ + --n 300 \ + --seed 42 \ + --out-dir data/irr_pilot/ \ + --source-json ~/OneDrive/Documents/Projects/PatientPunk_data/subreddit_posts_month_1081posts.json \ + --db-path data/patientpunk.db \ + --tagged-mentions data/drug_pipeline/tagged_mentions.json \ + --canonical-map data/drug_pipeline/canonical_map.json +``` + +against the same input JSON and pipeline outputs produces an identical sample. diff --git a/docs/irr_pilot_500/SAMPLING_METHODOLOGY.md b/docs/irr_pilot_500/SAMPLING_METHODOLOGY.md new file mode 100644 index 0000000..54fe4b0 --- /dev/null +++ b/docs/irr_pilot_500/SAMPLING_METHODOLOGY.md @@ -0,0 +1,218 @@ +# IRR Pilot 500 — Sampling Methodology + +This document describes how the 500-unit inter-coder reliability (IRR) sample +in this directory was drawn. It applies to the files in this folder: + +- `coding_input.csv` — the 500 sampled units, distributed to coders +- `ai_labels.csv` — analyst-only file with stratum labels and AI-pipeline output + for each sample +- `coder_output_template.csv` — empty form for coders to fill in +- `source/` — the underlying source data (filtered JSON, SQLite DB, AI pipeline + outputs) from which the sample was drawn + +Reproducibility scripts: `scripts/convert_jsonl_to_source.py` and +`scripts/sample_for_coding.py` (in the project repository). + +## Source corpus + +We scraped the entire posting history of r/covidlonghaulers using the Arctic +Shift archive, producing two files: + +- `r_covidlonghaulers_posts_all.jsonl` — 117,260 posts +- `r_covidlonghaulers_comments_all.jsonl` — 1,925,353 comments + +The full corpus spans 2020-07-24 to 2026-04-28. For this IRR pilot we restricted +the corpus to posts and comments with timestamps in the window +**2021-11-01 00:00 UTC through 2021-12-31 23:59 UTC**, yielding 2,739 posts and +39,559 comments. Comments whose parent post fell outside the window were +excluded so that no orphaned reply lacks its conversational context. + +## Codable pool + +Posts and comments were classified as "codable" if their body text was between +100 and 800 characters. The lower bound excludes one-line comments that lack +sufficient context for coding; the upper bound caps the cognitive load on human +coders. For comments, the parent context (up to 2 hops upstream) was retained +alongside the comment body — matching the AI pipeline's `max_upstream_depth=2` +setting, so coders see exactly the same upstream context the AI saw. + +After this filter, the codable pool contained 22,915 units, broken down as: + +- 2,730 units where the AI pipeline already extracted at least one drug mention +- 3,600 units where the AI found nothing but a regex of common medication terms + matched the body text +- 16,585 units where neither the AI nor the regex matched + +## Stratification with enrichment + +A simple random sample of patient narratives is dominated by posts that mention +no drugs at all. Such posts produce trivial perfect agreement among coders +("no drug here") and provide little signal about pipeline reliability on the +analyses that matter. To stress-test the pipeline more efficiently, we drew a +stratified random sample with three strata, weighted to oversample the +analysis-relevant cases: + +| Stratum | Definition | Share | Target n | Achieved n | +|---|---|---|---|---| +| `ai_found_drug` | AI pipeline extracted at least one drug mention from the unit | 50% | 250 | 250 | +| `no_ai_drug_keyword_match` | AI found no drug, but a regex of common medication terms matched | 30% | 150 | 150 | +| `no_ai_drug_random` | Neither the AI pipeline nor the regex matched | 20% | 100 | 100 | + +Each stratum tests a different aspect of pipeline behavior: + +- The `ai_found_drug` stratum tests **precision** and sentiment agreement: when + the AI flags a drug mention, do humans agree it is a drug, and do they agree + on the personal-use, sentiment, and signal-strength labels? +- The `no_ai_drug_keyword_match` stratum tests **recall**: of posts that look + pharmacologically relevant on a coarse heuristic, how many drug mentions is + the AI missing? +- The `no_ai_drug_random` stratum tests **specificity**: when the AI flags + nothing and there are no obvious medication keywords, do humans confirm "no + drug here"? + +Within each stratum, units were drawn uniformly at random using +`random.sample()` with `seed=43`. The seed is fixed for reproducibility and was +chosen to differ from the original 300-sample IRR pilot's seed (`seed=42`), +ensuring no sampling overlap when both pilots draw from the same source. The +three strata were concatenated and shuffled together before assignment of +sample IDs, so coders cannot infer a unit's stratum from its position in the +coding sheet. + +## Stratum proportions are deliberately non-representative + +The 50/30/20 weighting is chosen for analytical efficiency, not for +representativeness of the underlying corpus. In the actual codable pool, the +AI-found-drug stratum is roughly 12% of units (2,730 of 22,915); we upweighted +it to 50% so that per-drug agreement statistics have meaningful sample size. + +Inter-coder reliability statistics from this pilot should therefore be +interpreted as **conditional on stratum membership**: + +- The α for the AI-found-drug stratum (n = 250) estimates pipeline reliability + on the units that contribute to per-drug aggregations in downstream analyses. +- The α for the keyword-match stratum (n = 150) is diagnostic for pipeline + recall. +- The α for the random stratum (n = 100) is diagnostic for pipeline + specificity, and is dominated by trivially-agreed-on negatives ("no drug + here"). + +When citing IRR for the per-drug aggregation results in the historical +validation paper, the most relevant subsample is the `ai_found_drug` stratum, +not the unweighted full sample. + +## Sample identifiers and coder blinding + +Each sampled unit was assigned a sequential identifier of the form +`irr-pilot-NNN` (zero-padded to three digits). Stratum membership is recorded +in `ai_labels.csv`, which is **analyst-only** and not distributed to coders. + +The materials distributed to coders (`coding_input.csv` plus the codebook in +`data/irr_pilot/CODING_INSTRUCTIONS.md`) contain only: + +- The unit's body text +- The parent context (for comments — up to 2 hops upstream) +- The post date +- A blank coding template + +Coders see no AI labels, no stratum labels, and no other metadata that would +permit them to anticipate the AI's output for a given unit. + +## Date range of the sample + +| Property | Value | +|---|---| +| Earliest post | 2021-11-01 | +| Latest post | 2021-12-31 | +| Distinct dates | 61 | +| Total samples | 500 | + +## Pipeline outputs underlying stratum membership + +The `source/pipeline_output/` directory contains the AI pipeline outputs used +for stratification: + +- `tagged_mentions.json` — per-entry list of drug names extracted from each + post or comment +- `canonicalized_mentions.json` — same, after canonicalization to standard + drug names +- `prefilter_results.json` — fast-model prefilter decisions (whether each + (entry, drug) pair expresses a personal-use experience) + +The pipeline that produced these outputs is the same pipeline whose +classifications appear in `data/historical_validation/master_gap/posts.db` and +the per-drug downstream analyses; the LLM models used were +`anthropic/claude-haiku-4.5` (fast model, used for prefiltering and routine +extraction) and `anthropic/claude-sonnet-4.6` (strong model, used for +classification of (entry, drug) pairs that pass the prefilter). + +## Reproducibility + +Re-running + +``` +python scripts/convert_jsonl_to_source.py \ + --posts PatientPunk_data/r_covidlonghaulers_posts_all.jsonl \ + --comments PatientPunk_data/r_covidlonghaulers_comments_all.jsonl \ + --start 2021-11-01 \ + --end 2022-01-01 \ + --output data/irr_pilot_500/source/covidlonghaulers_nov_dec_2021.json + +python src/import_posts.py \ + --reddit-posts data/irr_pilot_500/source/covidlonghaulers_nov_dec_2021.json \ + --output-db data/irr_pilot_500/source/posts.db \ + --subreddit covidlonghaulers + +python src/run_sentiment_pipeline.py \ + --db data/irr_pilot_500/source/posts.db \ + --output-dir data/irr_pilot_500/source/pipeline_output \ + --workers 3 + +python scripts/sample_for_coding.py \ + --n 500 \ + --seed 43 \ + --out-dir data/irr_pilot_500/ \ + --source-json data/irr_pilot_500/source/covidlonghaulers_nov_dec_2021.json \ + --db-path data/irr_pilot_500/source/posts.db \ + --tagged-mentions data/irr_pilot_500/source/pipeline_output/tagged_mentions.json \ + --canonical-map data/irr_pilot_500/source/pipeline_output/canonical_map.json +``` + +against the same input JSONL files produces an identical sample. + +--- + +## Sampling Methodology — IRR Pilot 500 (Nov–Dec 2021) + +### Source corpus + +We scraped the entire posting history of r/covidlonghaulers using the Arctic Shift archive, producing two files: `r_covidlonghaulers_posts_all.jsonl` (117,260 posts) and `r_covidlonghaulers_comments_all.jsonl` (1,925,353 comments), spanning 2020-07-24 to 2026-04-28. We restricted this corpus to posts and comments with timestamps in the window 2021-11-01 00:00 UTC through 2021-12-31 23:59 UTC, yielding 2,739 posts and 39,559 comments. Comments whose parent post fell outside the window were excluded. + +### Codable pool + +Posts and comments were classified as "codable" if their body text was between 100 and 800 characters. The lower bound excludes one-line comments that lack sufficient context for coding; the upper bound caps the cognitive load on human coders. For comments, the parent context (up to 2 hops upstream) was retained alongside the comment body — matching the AI pipeline's `max_upstream_depth=2` setting, so coders see the same upstream context the AI saw. + +### Stratification with enrichment + +A simple random sample of patient narratives is dominated by posts that mention no drugs at all. Such posts produce trivial perfect agreement among coders ("no drug here") and provide little signal about pipeline reliability on the analyses that matter. To stress-test the pipeline more efficiently, we drew a stratified random sample with three strata, weighted to oversample the analysis-relevant cases: + +| Stratum | Definition | Share | Target n | +|---|---|---|---| +| `ai_found_drug` | The AI pipeline extracted at least one drug mention from the unit | 50% | 250 | +| `no_ai_drug_keyword_match` | The AI pipeline found no drug, but a regex of common medication terms matched | 30% | 150 | +| `no_ai_drug_random` | Neither the AI pipeline nor the regex matched | 20% | 100 | + +The `ai_found_drug` stratum tests precision and sentiment agreement: when the AI flags a drug, do humans agree it's a drug, and do they agree on its sentiment? The `keyword_match` stratum tests recall: of posts that look pharmacologically relevant on a coarse heuristic, how many drugs is the AI missing? The `random` stratum tests specificity: when the AI flags nothing and there are no obvious keywords, do humans confirm "no drug here"? + +Within each stratum, units were drawn uniformly at random using `random.sample()` with `seed=43`. The seed is fixed for reproducibility and was chosen to differ from the original 300-sample pilot's seed (42). The three strata were concatenated and shuffled together before assignment of sample IDs, so coders cannot infer a unit's stratum from its position in the coding sheet. + +### Stratum proportions are deliberately non-representative + +The 50/30/20 weighting is chosen for analytical efficiency, not representativeness. In the actual codable pool, the AI-found-drug stratum is roughly 12% of units (2,730 of 22,915); we upweighted it to 50% so per-drug agreement statistics have meaningful sample size. Inter-coder reliability statistics from this pilot should therefore be interpreted as conditional on stratum membership: the alpha for the AI-found-drug stratum estimates pipeline reliability on the units that contribute to per-drug aggregations in downstream analyses, while the keyword and random strata contribute mainly diagnostic information about pipeline recall and specificity. + +### Sample identifiers and coder blinding + +Each sampled unit was assigned a sequential identifier of the form `irr-pilot-NNN` (zero-padded to three digits). Stratum membership is recorded in an analyst-only file (`ai_labels.csv`) and is not visible to coders. The materials distributed to coders consist of the unit's body text, its parent context (for comments), the post date, and a blank coding template — no AI labels, no stratum labels, no other metadata that would permit a coder to anticipate the AI's output. + +### Reproducibility + +The exact corpus filtering, stratification, and sampling steps are implemented in `scripts/convert_jsonl_to_source.py` and `scripts/sample_for_coding.py`. Re-running with the same input files, date range, seed, and target sample size produces an identical sample. From 4ff356dc5b6f6d17dffcf826dd216d00ccd1ad00 Mon Sep 17 00:00:00 2001 From: Shaun Date: Mon, 4 May 2026 14:14:28 -0700 Subject: [PATCH 2/5] IRR pilots: add samples + codebook to docs; align both templates to v1.4 schema Brings the IRR sample artifacts and codebook into version control under docs/, separate from data/ which stays gitignored. Reviewers can see the samples coders received and the rules they coded against, without needing S3 download links. What landed ----------- 1. **300-pilot artifacts** added under docs/irr_pilot/: - coding_input.csv (300 sampled units distributed to coders) - ai_labels.csv (analyst-only stratum labels + AI pipeline output) - coder_output_template.csv (blank form, v1.4 schema) - CODING_INSTRUCTIONS.md (codebook, updated to v1.4) - CODING_INSTRUCTIONS.pdf (regenerated from v1.4 md) - SAMPLING_METHODOLOGY.md (already existed; updated to link the new tracked artifacts) 2. **500-pilot artifacts** added under docs/irr_pilot_500/: - coding_input.csv (500 sampled units) - ai_labels.csv (analyst stratum labels) - coder_output_template.csv (blank form, v1.4 schema) - SAMPLING_METHODOLOGY.md (already existed; updated to link tracked artifacts and to point at the shared codebook in docs/irr_pilot/) 3. **Codebook bumped v1.3 -> v1.4.** Schema rationalization: - Removed: side_effects_reported, side_effects_description columns and their full Step-5 section. Per-drug side-effects coding turned out to add coder cognitive load without changing analytical conclusions. - Added: per-drug personal_use (yes/no) column. Replaces the "sentiment = neutral implies no personal use" implicit encoding with an explicit yes/no decision. Cleaner separation: personal_use is the inclusion flag; sentiment is only filled when included. - STOP rule: if personal_use=no, blank sentiment and signal_strength (still record confidence). Non-personal-use rows contribute to IRR on the personal_use decision but don't enter per-drug sentiment analysis. - Updated: multi-drug example, all 8 worked examples, decision tree. 4. **Both templates now have identical headers** (sample_id, coder_id, drug_mention_verbatim, personal_use, sentiment, signal_strength, confidence, notes). The 500-pilot template was already on this schema; the 300-pilot template was hand-regenerated from its sample_ids list to match. 5. **OneDrive nesting fix.** docs/irr_pilot_500/ had been folded under docs/irr_pilot/irr_pilot_500/ by OneDrive sync at some point; moved files back to the top-level docs/irr_pilot_500/ where git expected them. Co-Authored-By: Claude Opus 4.7 (1M context) --- docs/irr_pilot/CODING_INSTRUCTIONS.md | 212 + docs/irr_pilot/CODING_INSTRUCTIONS.pdf | Bin 0 -> 18166 bytes docs/irr_pilot/SAMPLING_METHODOLOGY.md | 32 +- docs/irr_pilot/ai_labels.csv | 301 ++ docs/irr_pilot/coder_output_template.csv | 301 ++ docs/irr_pilot/coding_input.csv | 4774 ++++++++++++++++++ docs/irr_pilot_500/SAMPLING_METHODOLOGY.md | 29 +- docs/irr_pilot_500/ai_labels.csv | 501 ++ docs/irr_pilot_500/coder_output_template.csv | 501 ++ docs/irr_pilot_500/coding_input.csv | 1101 ++++ 10 files changed, 7730 insertions(+), 22 deletions(-) create mode 100644 docs/irr_pilot/CODING_INSTRUCTIONS.md create mode 100644 docs/irr_pilot/CODING_INSTRUCTIONS.pdf create mode 100644 docs/irr_pilot/ai_labels.csv create mode 100644 docs/irr_pilot/coder_output_template.csv create mode 100644 docs/irr_pilot/coding_input.csv create mode 100644 docs/irr_pilot_500/ai_labels.csv create mode 100644 docs/irr_pilot_500/coder_output_template.csv create mode 100644 docs/irr_pilot_500/coding_input.csv diff --git a/docs/irr_pilot/CODING_INSTRUCTIONS.md b/docs/irr_pilot/CODING_INSTRUCTIONS.md new file mode 100644 index 0000000..3c26285 --- /dev/null +++ b/docs/irr_pilot/CODING_INSTRUCTIONS.md @@ -0,0 +1,212 @@ +# Coding Instructions — PatientPunk IRR Pilot (v1.4) + +**Workflow:** +1. Open `reading_packet.html` in a browser — this has all 300 posts rendered as cards, each labeled with its `sample_id`. +2. Open `coder_output_template.csv` alongside (in Excel, Sheets, or your editor of choice). The CSV has one row pre-filled per `sample_id`. +3. For each sample, look up the matching `sample_id` in the HTML packet, read the post, and: + - **If the post mentions one drug** → fill in the pre-filled row. + - **If the post mentions multiple drugs** → use the pre-filled row for the first drug, then **add additional rows with the same `sample_id`** for each additional drug. One row per drug. + - **If the post mentions no drug** → set `drug_mention_verbatim = NONE` and leave the rest of the annotation columns blank. + +**One row per drug per sample.** Same `sample_id` repeats across rows when multiple drugs are mentioned. `sample_id` is what joins back to the post; `drug_mention_verbatim` is what distinguishes rows within a sample. + +Rules below are adapted from the AI pipeline's prompts. Disagreement between coders should come from genuinely ambiguous posts, not from different interpretations of these rules. + +## Columns you fill in + +| Column | Values | Captures | +|---|---|---| +| `coder_id` | your name (`eli`, `tj`) | Who coded this row | +| `drug_mention_verbatim` | free text, or `NONE` | Drug/treatment as written or referenced in the post (don't canonicalize). Use `NONE` if no drug mentioned. | +| `personal_use` | `yes` / `no` | Did the author personally use this drug? `yes` only when the author describes their own experience with this specific drug. `no` for questions, hearsay, advice to others, hypothetical or planned use, or citing studies. | +| `sentiment` | `positive` / `negative` / `mixed` / `neutral` | Author's sentiment about THIS DRUG specifically. Only filled when `personal_use = yes`. Use `neutral` only when personal use is unclear or the author explicitly takes no position despite using the drug. | +| `signal_strength` | `strong` / `moderate` / `weak` / `n/a` | **About the post:** how emphatic/specific/quantified is the author's report on this drug? Use `n/a` when `personal_use = no`. | +| `confidence` | 1–5 | **About your coding:** how sure are you the labels you picked are right? Always filled, even when `personal_use = no`. | +| `notes` | free text | Reasoning, ambiguity flags, anything worth recording (optional) | + +> **⚠️ STOP rule.** If `personal_use = no`, leave `sentiment` and +> `signal_strength` blank (or set to `n/a`) and move on. The classifier and +> the analysis only count personal-use reports, so non-personal-use rows +> contribute to inter-coder reliability on the `personal_use` decision and +> nothing further. + +> **⚠️ Don't confuse `signal_strength` with `confidence`.** They are independent. +> `signal_strength` rates **the post's language** — a brief mention is `weak` even +> if it's trivial to code. `confidence` rates **your certainty in your own labels** — +> a very emphatic post can still be hard to code if the outcome is genuinely +> ambiguous. + +--- + +## Multi-drug example (read this first) + +Sample `irr-pilot-003` says: *"I'm on LDN and magnesium. About 40% better than a year ago."* + +Two rows, both with `sample_id = irr-pilot-003`: + +| sample_id | coder_id | drug_mention_verbatim | personal_use | sentiment | signal_strength | confidence | notes | +|---|---|---|---|---|---|---|---| +| irr-pilot-003 | eli | LDN | yes | positive | weak | 4 | in stack | +| irr-pilot-003 | eli | magnesium | yes | positive | weak | 4 | in stack | + +Same sample_id, one row per drug, each drug gets its own per-drug +`personal_use` / `sentiment` / `signal_strength`. + +--- + +## Step 1 — Identify each drug mention + +**Include:** prescription drugs (LDN, gabapentin), OTC (ibuprofen, Tylenol), supplements (magnesium, B12), enzymes (DAO, nattokinase), drug *categories* (antihistamines, SSRIs), generic references ("an oral antibiotic"), non-drug treatments (PT, infrared sauna, compression, specific diets), devices (CPAP, IV saline). + +**Exclude:** vague references ("medication", "something"), condition names (unless being treated), food (unless framed therapeutically). + +**Record verbatim — written or referenced.** If the author wrote a name, use their exact wording ("LDN" stays "LDN" — don't expand to "low dose naltrexone"). If they only referenced indirectly ("the shot I got", "her prescription for the nerve pain"), record the best short phrase from the sample. + +**One row per distinct drug.** Same drug mentioned multiple times in the same sample = ONE row. Different drugs = different rows. A drug class and a specific drug from it (e.g., "antihistamines, specifically Zyrtec") = TWO rows. + +**Reply chains** — the reading packet shows upstream context if the sample is a reply. Use it only to resolve pronouns ("it" = whatever the parent was about). The signal must come from the reply itself, not the upstream. + +--- + +## Step 2 — personal_use (per drug) + +Decide first: did the author personally use this drug? + +- **`yes`** — author describes their own experience with this drug (taking it, having taken it, side effects from it, results from it). +- **`no`** — questions to others, hearsay, advice, citing studies, hypothetical or planned use, mentions of someone else's experience, or a reply that doesn't itself express personal use even if the parent did. + +If `personal_use = no`, **stop here for this drug-row**: leave `sentiment` and `signal_strength` blank (or `n/a`), still record `confidence` (how sure are you the personal-use call is right?), and move on. Non-personal-use rows are useful for IRR on the personal-use decision but don't enter the per-drug sentiment analysis. + +## Step 3 — sentiment (per drug, only when personal_use = yes) + +Pick one for each drug-row: + +- **`positive`** — author personally used this drug and it helped them. Includes partial improvement ("helped but wasn't a miracle" = **positive, not mixed**). +- **`negative`** — author personally used this drug and it didn't help, made things worse, or they stopped because it wasn't working. +- **`mixed`** — genuinely conflicting outcomes ("helped pain but worsened sleep"), author explicitly can't decide. Use sparingly. +- **`neutral`** — author personally used this drug but explicitly takes no position on whether it helped (rare; usually means `personal_use = no` was the right call). + +--- + +## Step 4 — signal_strength (per drug, only when personal_use = yes) + +*A property of the **post**, not of your coding. Measures how informative the author's report on this drug is to a reader.* + +- **`strong`** — any one of: quantified improvement, named specific symptom improving, clear temporal attribution, dramatic outcome, emphatic endorsement ("game changer", "wish I started sooner", "nothing else worked"), or emphatic effect language ("helps a lot", "did nothing"). **Hedging doesn't downgrade** — "I'm still sick but LDN changed my life" is `strong`. +- **`moderate`** — simple affirm/deny without emphasis ("it works for me", "yes", "it helps"). +- **`weak`** — drug named in a stack without specific credit, slight or uncertain effect, or still using without complaint. +- **`n/a`** — when `personal_use = no` (no personal use to rate). + +--- + +## Step 5 — confidence (1–5) + +*A property of **your coding**, not of the post. Independent of signal strength. Always filled, including when `personal_use = no`.* + +| Situation | `personal_use` | `signal_strength` | `confidence` | +|---|---|---|---| +| "LDN 4.5mg cut my fatigue 70% in 6 weeks" | yes | `strong` | 5 | +| "LDN helped some things but I honestly can't tell if it's the drug or pacing" | yes | `strong` | 2 | +| "I take LDN, magnesium, and H1 blockers. Doing okay." | yes | `weak` | 5 | +| "My doctor mentioned LDN but I'm not sure if I started yet" | no | `n/a` | 2 | + +Use the full range — **5** unambiguous, **3** reasonable people could disagree, **1** very uncertain. + +--- + +## Special cases + +**Causal-context drugs** — author blames a treatment for causing their condition (e.g., "the Moderna shot is what gave me long COVID"): `personal_use = yes` (they did receive it), `sentiment = negative`, `signal_strength = weak`, `notes = causal-context`. + +**Multi-drug stacks** — one row per drug. Each gets its own `personal_use` and (if yes) its own sentiment based on what the author says about that specific drug. If overall improvement is mentioned but no drug is specifically credited, default to `personal_use = yes` / `positive` / `weak` per drug. + +**Questions / advice / hearsay** — `personal_use = no`, sentiment / signal_strength blank. + +**No treatments mentioned at all** — single row with `drug_mention_verbatim = NONE`, `personal_use` blank, other annotation fields blank, `confidence = 5`. + +**Irrelevant mentions** (drug mentioned only in a subreddit name, URL, signature) — don't code. + +--- + +## Worked examples + +**1 — personal use, positive, strong:** +*"I started LDN 4.5mg 6 months ago and my fatigue dropped by probably 70%."* +→ LDN / yes / positive / strong / 5 / *quantified improvement* + +**2 — multi-drug stack (one row per drug):** +*"I'm on LDN, H1 blockers, and magnesium. Probably 40% better than a year ago."* +→ Three rows, same sample_id: +- LDN / yes / positive / weak / 4 / in stack +- H1 blockers / yes / positive / weak / 4 / in stack +- magnesium / yes / positive / weak / 4 / in stack + +**3 — question, no personal use:** +*"Has anyone tried paxlovid late — like, more than 5 days after onset?"* +→ paxlovid / no / (blank) / n/a / 5 / *question to others* + +**4 — mixed:** +*"LDN definitely helped my pain — but tanked my sleep for the first 2 months. Still worth it."* +→ LDN / yes / mixed / strong / 5 / *helped pain, hurt sleep* + +**5 — causal-context:** +*"I was fine until my second Pfizer shot. That's when everything started."* +→ Pfizer / yes / negative / weak / 4 / *causal-context* + +**6 — negative:** +*"Took Paxlovid for 5 days. Didn't notice any improvement."* +→ Paxlovid / yes / negative / strong / 5 / *no perceived effect* + +**7 — no drugs:** +*"Today was really rough. Spent most of the day in bed."* +→ NONE / (blank) / (blank) / (blank) / 5 / *no drug mentioned* + +**8 — reply without personal use:** +Parent: "LDN has been a game-changer for my PEM." +Reply: "How did you get your doctor to prescribe it?" +→ LDN / no / (blank) / n/a / 5 / *reply doesn't express personal use* + +--- + +## Process reminders + +Code blind — don't look at AI coder outputs, don't discuss with other coders until everyone's done. Code in one sitting if possible. When stuck, code your best guess with `confidence = 1 or 2` plus a note explaining the ambiguity. + +## Decision tree per drug-row + +``` +For each drug in the post: + +personal_use = ? +├── no (question / hearsay / advice / hypothetical / → no / sentiment blank +│ reply doesn't express personal use) / signal_strength = n/a +│ / record confidence +│ +└── yes (author describes own experience) → yes / fill all below + + sentiment = ? + ├── this drug helped (even partially) → positive + ├── this drug didn't help or made worse → negative + ├── opposing effects from this drug → mixed + └── personal use but no position taken → neutral (rare) + + signal_strength = ? + ├── quantified / named symptom / dramatic / + │ emphatic endorsement / emphatic effect → strong + ├── simple affirm or deny, no detail → moderate + └── in a stack, no specific credit → weak + + confidence = 1..5 + (always — including for personal_use = no) +``` + +--- + +## What changed from v1.3 + +- **Replaced per-drug side-effects fields with a per-drug `personal_use` flag.** Side-effects coding (`side_effects_reported` and `side_effects_description` columns) was dropped. The `personal_use` column was added to make the personal-use determination explicit rather than encoded implicitly via `sentiment = neutral`. +- **Sentiment now applies only when `personal_use = yes`.** When `personal_use = no`, sentiment and signal_strength are blank (or `n/a`). +- **Single-schema templates.** Both the 300-pilot and 500-pilot `coder_output_template.csv` files now share the same column set: `sample_id, coder_id, drug_mention_verbatim, personal_use, sentiment, signal_strength, confidence, notes`. +- Updated worked examples and decision tree. + +*v1.4 · pilot run with explicit `personal_use` column, no per-drug side-effects dimension. 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438b539..beb0c4d 100644 --- a/docs/irr_pilot/SAMPLING_METHODOLOGY.md +++ b/docs/irr_pilot/SAMPLING_METHODOLOGY.md @@ -1,23 +1,27 @@ # IRR Pilot 300 — Sampling Methodology This document describes how the original 300-unit inter-coder reliability (IRR) -sample in this directory was drawn. It applies to the files in this folder: - -- `coding_input.csv` — the 300 sampled units, distributed to coders -- `ai_labels.csv` — analyst-only file with stratum labels and AI-pipeline output - for each sample -- `coder_output_template.csv` — empty form for coders to fill in -- `CODING_INSTRUCTIONS.md` / `CODING_INSTRUCTIONS.pdf` — codebook distributed - alongside the coding sheet -- `reading_packet.html` — the same 300 samples rendered as browser-readable - cards (max 2-hop upstream chain per comment) -- `irr_pilot_for_coders.zip` — combined coder-facing bundle +sample in this directory was drawn. It applies to the tracked artifacts in +this folder: + +- [`coding_input.csv`](./coding_input.csv) — the 300 sampled units, + distributed to coders (one row per sample, columns: sample_id, subreddit, + post_date, unit_type, title, parent_context, post_text) +- [`ai_labels.csv`](./ai_labels.csv) — analyst-only file with stratum labels + and AI-pipeline output for each sample (columns: sample_id, source_post_id, + stratum, ai_drug_count, ai_drugs, ai_sentiments, ai_signal_strengths, + keyword_match) +- [`coder_output_template.csv`](./coder_output_template.csv) — empty form + for coders to fill in (one row per sample_id, blank fields) +- [`CODING_INSTRUCTIONS.md`](./CODING_INSTRUCTIONS.md) / + [`CODING_INSTRUCTIONS.pdf`](./CODING_INSTRUCTIONS.pdf) — codebook + distributed alongside the coding sheet This is the *original* IRR pilot. A larger 500-unit pilot was drawn later under the same procedure with `seed=43`; see -`data/irr_pilot_500/SAMPLING_METHODOLOGY.md`. The two pilots cover -non-overlapping windows of r/covidlonghaulers and use different seeds, so no -codable unit can appear in both. +[`docs/irr_pilot_500/SAMPLING_METHODOLOGY.md`](../irr_pilot_500/SAMPLING_METHODOLOGY.md). +The two pilots cover non-overlapping windows of r/covidlonghaulers and use +different seeds, so no codable unit can appear in both. Reproducibility script: `scripts/sample_for_coding.py` (in the project repository). diff --git a/docs/irr_pilot/ai_labels.csv b/docs/irr_pilot/ai_labels.csv new file mode 100644 index 0000000..66bf179 --- /dev/null +++ b/docs/irr_pilot/ai_labels.csv @@ -0,0 +1,301 @@ +sample_id,source_post_id,stratum,ai_drug_count,ai_drugs,ai_sentiments,ai_signal_strengths,keyword_match +irr-pilot-001,t1_oehll2z,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-002,t1_odu5bzu,no_ai_drug_random,0,,,,no +irr-pilot-003,t1_oa2rtgg,ai_found_drug,1,taurine,positive,weak,yes +irr-pilot-004,t1_oa7qp79,ai_found_drug,1,low dose naltrexone,positive,moderate,yes +irr-pilot-005,t1_ob1c8yf,no_ai_drug_random,0,,,,no +irr-pilot-006,t1_obwwg1t,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-007,t3_1rvtar1,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-008,t1_oa3ayz8,ai_found_drug,2,taurine|n-acetylcysteine,negative|negative,strong|moderate,yes +irr-pilot-009,t1_oa2e0vc,ai_found_drug,1,ablation,negative,weak,yes +irr-pilot-010,t1_oeih0qu,ai_found_drug,1,pepcid,positive,weak,yes +irr-pilot-011,t3_1rrvcad,ai_found_drug,1,weed,mixed,moderate,no +irr-pilot-012,t1_oa90fdi,ai_found_drug,4,allegra|cimetidine|famotidine|antihistamines,positive|positive|mixed|mixed,weak|weak|moderate|moderate,yes +irr-pilot-013,t1_oamlfs5,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-014,t1_oa5gu2n,ai_found_drug,1,z pak,negative,weak,no +irr-pilot-015,t1_oa2ooq3,ai_found_drug,2,peptides|bpc-157,negative|negative,strong|moderate,yes +irr-pilot-016,t1_oaavyr0,ai_found_drug,1,intravenous immunoglobulin,mixed,moderate,no +irr-pilot-017,t1_oe0u9dn,no_ai_drug_random,0,,,,no +irr-pilot-018,t1_oc4487a,no_ai_drug_random,0,,,,no +irr-pilot-019,t1_obc5nmb,ai_found_drug,1,pepcid,negative,moderate,yes +irr-pilot-020,t1_oekg5by,no_ai_drug_random,0,,,,no +irr-pilot-021,t1_oa2twig,ai_found_drug,1,taurine,negative,moderate,yes +irr-pilot-022,t1_oa5kp0j,ai_found_drug,1,prednisone,positive,moderate,yes +irr-pilot-023,t1_ocou425,no_ai_drug_random,0,,,,no +irr-pilot-024,t1_oc9v8rr,no_ai_drug_random,0,,,,no +irr-pilot-025,t1_odwaduc,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-026,t1_oaavm9u,ai_found_drug,3,broad spectrum antibiotics|fecal microbiota transplant|antibiotics,positive|positive|positive,weak|weak|weak,no +irr-pilot-027,t3_1s0hic1,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-028,t1_oecorfd,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-029,t1_oablltj,no_ai_drug_random,0,,,,no +irr-pilot-030,t1_of9skx5,no_ai_drug_random,0,,,,no +irr-pilot-031,t1_obh54go,no_ai_drug_random,0,,,,no +irr-pilot-032,t1_oa1bqfj,ai_found_drug,1,low dose naltrexone,negative,moderate,yes +irr-pilot-033,t1_ob09v2q,no_ai_drug_random,0,,,,no +irr-pilot-034,t1_oa5ysqt,ai_found_drug,1,ivermectin,mixed,strong,yes +irr-pilot-035,t1_oag3wfz,no_ai_drug_random,0,,,,no +irr-pilot-036,t1_oaye3z7,ai_found_drug,1,taurine,negative,strong,yes +irr-pilot-037,t1_oa1defx,ai_found_drug,1,low dose naltrexone,negative,moderate,no +irr-pilot-038,t1_oezyt0p,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-039,t1_o9ykeur,ai_found_drug,1,taurine,positive,weak,no +irr-pilot-040,t1_oa3d8x6,ai_found_drug,1,taurine,positive,moderate,yes +irr-pilot-041,t1_oa1m0ln,ai_found_drug,1,hydroxyzine,weak,weak,yes +irr-pilot-042,t1_o9znq0q,ai_found_drug,2,heavy cream|green tea,positive|positive,strong|weak,yes +irr-pilot-043,t1_odz4ujb,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-044,t1_ocfp3mf,no_ai_drug_random,0,,,,no +irr-pilot-045,t1_oasw6tv,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-046,t1_of9mcri,ai_found_drug,1,pepcid,positive,weak,yes +irr-pilot-047,t1_oa72qfl,ai_found_drug,1,low amine diet,positive,strong,no +irr-pilot-048,t1_od1qwcn,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-049,t1_oa31clh,ai_found_drug,3,pregabalin|lyrica|disease modifying therapy,negative|negative|negative,weak|weak|moderate,yes +irr-pilot-050,t1_oa00xeu,ai_found_drug,5,glp-1|peptides|ss-31|kpv|tirzepatide,negative|positive|positive|positive|negative,moderate|strong|strong|strong|moderate,no +irr-pilot-051,t1_ofdqtcc,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-052,t1_odzne9b,ai_found_drug,1,pepcid,negative,strong,yes +irr-pilot-053,t1_oa80txw,ai_found_drug,1,low dose naltrexone,negative,weak,yes +irr-pilot-054,t1_oa4a3z9,ai_found_drug,1,intravenous immunoglobulin,mixed,weak,no +irr-pilot-055,t3_1ses60l,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-056,t1_o9y0b5k,ai_found_drug,2,vitamin b12|ferritin,positive|positive,moderate|moderate,yes +irr-pilot-057,t1_oa705e6,ai_found_drug,4,sodium chloride|potassium chloride|ketogenic diet|magnesium,positive|positive|positive|positive,weak|weak|strong|weak,yes +irr-pilot-058,t1_o9xybmh,ai_found_drug,2,aspirin|ibuprofen,positive|positive,moderate|moderate,yes +irr-pilot-059,t1_oa6an4i,ai_found_drug,1,mucinex,positive,strong,no +irr-pilot-060,t1_oa5cbk4,ai_found_drug,1,vitamin d,negative,moderate,yes +irr-pilot-061,t1_ock7qqa,no_ai_drug_random,0,,,,no +irr-pilot-062,t1_obf24tg,no_ai_drug_random,0,,,,no +irr-pilot-063,t1_oa1opd9,ai_found_drug,2,muscle relaxer|beta blocker,negative|negative,moderate|moderate,no +irr-pilot-064,t1_ocmwhp5,ai_found_drug,1,taurine,positive,weak,yes +irr-pilot-065,t1_oco3b4t,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-066,t1_oa3wd08,ai_found_drug,1,iron,negative,strong,yes +irr-pilot-067,t1_oc4ppkw,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-068,t1_ob8c2qb,no_ai_drug_random,0,,,,no +irr-pilot-069,t1_oaz7xla,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-070,t3_1rt20cb,ai_found_drug,2,zyrtec|famotidine,negative|negative,moderate|moderate,yes +irr-pilot-071,t1_oa18t8h,ai_found_drug,1,peptides,positive,weak,yes +irr-pilot-072,t1_obwtkjq,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-073,t3_1rt087d,ai_found_drug,2,functional medicine|acupuncture,positive|negative,strong|strong,no +irr-pilot-074,t1_oa4lhm4,ai_found_drug,1,low dose naltrexone,mixed,strong,yes +irr-pilot-075,t1_odwa711,ai_found_drug,1,pepcid,negative,strong,no +irr-pilot-076,t1_oc3d0xd,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-077,t1_oa7y2e6,ai_found_drug,2,taurine|nicotine,positive|positive,strong|strong,no +irr-pilot-078,t1_oevtowl,ai_found_drug,1,pepcid,positive,strong,yes +irr-pilot-079,t1_oce6tz5,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-080,t3_1rtzedd,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-081,t1_of2e5wf,ai_found_drug,1,pepcid,positive,strong,yes +irr-pilot-082,t1_oc1lr4n,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-083,t1_ofbg03g,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-084,t1_ob3qa3m,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-085,t1_obhwaxl,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-086,t3_1s3k1au,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-087,t1_oe1ee69,no_ai_drug_random,0,,,,no +irr-pilot-088,t1_oezirg2,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-089,t1_oby15ip,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-090,t1_occf1eb,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-091,t1_oaaxcru,ai_found_drug,1,vancomycin,positive,weak,no +irr-pilot-092,t1_oferqmq,no_ai_drug_random,0,,,,no +irr-pilot-093,t1_oe062xh,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-094,t1_oa7yub8,ai_found_drug,1,magnesium,positive,strong,yes +irr-pilot-095,t1_oa4ox5h,ai_found_drug,1,low dose naltrexone,positive,strong,yes +irr-pilot-096,t1_oaau858,ai_found_drug,1,fasting,mixed,weak,no +irr-pilot-097,t3_1rra5h9,ai_found_drug,2,antibiotics|olmesartan,negative|negative,weak|strong,yes +irr-pilot-098,t1_octklsq,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-099,t1_oaau6sw,ai_found_drug,1,tirzepatide,negative,strong,no +irr-pilot-100,t1_oax3xe3,no_ai_drug_random,0,,,,no +irr-pilot-101,t1_oaxyxpr,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-102,t1_o9z9erq,ai_found_drug,1,antihistamines,negative,moderate,yes +irr-pilot-103,t3_1sd3rz7,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-104,t1_oa198id,ai_found_drug,2,glp-1|low dose naltrexone,mixed|positive,moderate|weak,yes +irr-pilot-105,t1_oeidbpe,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-106,t1_oannj72,no_ai_drug_random,0,,,,no +irr-pilot-107,t1_oa6758c,ai_found_drug,2,mirtazapine|antidepressants,positive|positive,strong|strong,yes +irr-pilot-108,t1_oavi1a9,no_ai_drug_random,0,,,,no +irr-pilot-109,t1_oabhljo,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-110,t1_ocfc55s,ai_found_drug,1,compounded ketotifen,negative,strong,no +irr-pilot-111,t1_odj46t8,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-112,t1_oa2n2pm,ai_found_drug,3,bpc-157|ghk-cu|kpv,positive|positive|positive,weak|weak|weak,no +irr-pilot-113,t1_odq7e9f,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-114,t1_oa33y99,ai_found_drug,1,peptides,positive,weak,yes +irr-pilot-115,t1_odyueua,ai_found_drug,1,taurine,positive,weak,yes +irr-pilot-116,t1_oejfkwi,ai_found_drug,1,pepcid,positive,strong,no +irr-pilot-117,t1_oa1y9dz,ai_found_drug,1,antihistamines,positive,moderate,yes +irr-pilot-118,t1_oa7q0k7,ai_found_drug,1,low dose naltrexone,positive,weak,yes +irr-pilot-119,t1_oaqt81o,no_ai_drug_random,0,,,,no +irr-pilot-120,t1_oa4pcxj,ai_found_drug,2,low dose naltrexone|vitamin d,positive|negative,strong|weak,no +irr-pilot-121,t1_oc9w79e,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-122,t1_oa453zk,ai_found_drug,1,ferrous fumarate,negative,strong,yes +irr-pilot-123,t1_ofg6e3d,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-124,t1_oa3l1bz,ai_found_drug,1,taurine,positive,strong,yes +irr-pilot-125,t1_oa0b899,ai_found_drug,4,escitalopram|ssri|fluoxetine|antihistamines,mixed|positive|positive|weak,moderate|strong|strong|weak,yes +irr-pilot-126,t1_oaho3lo,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-127,t1_oahxc0n,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-128,t1_obiatz4,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-129,t1_ob2fd9i,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-130,t1_of4668p,no_ai_drug_random,0,,,,no +irr-pilot-131,t1_oeor5nz,ai_found_drug,1,pepcid,positive,weak,no +irr-pilot-132,t1_odcp8se,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-133,t1_obh2e1m,ai_found_drug,1,taurine,negative,moderate,yes +irr-pilot-134,t1_oa3u7sw,ai_found_drug,2,glp-1|peptides,negative|negative,strong|strong,no +irr-pilot-135,t3_1s0lgma,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-136,t1_oc53swa,ai_found_drug,1,pepcid,positive,weak,yes +irr-pilot-137,t1_oc7qg7o,ai_found_drug,1,pepcid,positive,strong,yes +irr-pilot-138,t1_obsmwd7,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-139,t1_oa0fv0b,ai_found_drug,1,low dose naltrexone,positive,strong,yes +irr-pilot-140,t1_oa4tkzy,ai_found_drug,1,vitamin d,positive,weak,yes +irr-pilot-141,t1_oaam2w1,ai_found_drug,2,zinc|magnesium,positive|positive,moderate|weak,yes +irr-pilot-142,t1_oeoyvmj,ai_found_drug,1,pepcid,negative,moderate,yes +irr-pilot-143,t1_oa2uvc0,ai_found_drug,1,glp-1,mixed,moderate,yes +irr-pilot-144,t1_of0c6fh,no_ai_drug_random,0,,,,no +irr-pilot-145,t1_odhwgm3,ai_found_drug,1,pepcid,positive,strong,yes +irr-pilot-146,t1_oa96pod,ai_found_drug,2,intermittent fasting|vision therapy,positive|positive,weak|weak,no +irr-pilot-147,t1_of1xhce,no_ai_drug_random,0,,,,no +irr-pilot-148,t1_oa4zlh0,ai_found_drug,1,low dose naltrexone,positive,strong,yes +irr-pilot-149,t1_oa3f50f,ai_found_drug,3,glp-1|bpc-157|mots-c,positive|negative|negative,weak|moderate|moderate,yes +irr-pilot-150,t1_oex1ri6,no_ai_drug_random,0,,,,no +irr-pilot-151,t1_oa4ccte,ai_found_drug,1,low dose naltrexone,mixed,strong,yes +irr-pilot-152,t1_och35yk,no_ai_drug_random,0,,,,no +irr-pilot-153,t3_1sgqdk3,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-154,t1_oa2r9kb,ai_found_drug,9,taurine|wellbutrin|b complex|curcumin|omega-3|n-acetylcysteine|guanfacine|low dose naltrexone|vitamin d,positive|positive|positive|positive|positive|positive|positive|positive|positive,weak|weak|weak|weak|weak|weak|weak|weak|weak,yes +irr-pilot-155,t1_oe91oim,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-156,t1_obaj8rn,no_ai_drug_random,0,,,,no +irr-pilot-157,t1_oa4mkfr,ai_found_drug,1,ssri,positive,weak,yes +irr-pilot-158,t1_ocrmblx,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-159,t1_od5xuik,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-160,t1_od5x7hh,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-161,t1_oc5ela8,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-162,t1_o9zhktm,ai_found_drug,1,electrolytes,positive,weak,yes +irr-pilot-163,t1_o9yxrsb,ai_found_drug,1,caffeine,negative,weak,no +irr-pilot-164,t1_oa03fsm,ai_found_drug,1,a/o treatments,negative,strong,no +irr-pilot-165,t1_oe5m5aa,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-166,t1_oa81q8u,ai_found_drug,6,vitamin k2|vitamin c|zinc|whey protein|coq10|quercetin,positive|weak|weak|positive|positive|positive,weak|weak|weak|weak|weak|weak,no +irr-pilot-167,t1_of163ez,no_ai_drug_random,0,,,,no +irr-pilot-168,t1_of273tq,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-169,t1_oc85eg7,no_ai_drug_random,0,,,,no +irr-pilot-170,t1_obqnez7,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-171,t1_oa6yhoe,ai_found_drug,4,medication|mast cell stabilizer|antihistamines|ketotifen,positive|positive|positive|positive,strong|strong|strong|strong,yes +irr-pilot-172,t1_oa1jjmz,no_ai_drug_random,0,,,,no +irr-pilot-173,t3_1rwa205,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-174,t1_oa5bzge,ai_found_drug,1,virgin coconut oil,positive,strong,no +irr-pilot-175,t1_ob6yoi4,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-176,t1_oaiodwg,ai_found_drug,1,pepcid,positive,strong,yes +irr-pilot-177,t1_oat3lys,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-178,t1_oa96v21,ai_found_drug,2,sildenafil|l-citrulline,weak|positive,weak|weak,yes +irr-pilot-179,t1_o9yogu7,ai_found_drug,1,low dose naltrexone,negative,moderate,yes +irr-pilot-180,t1_o9xja64,ai_found_drug,2,vitamin d|ferritin,negative|negative,strong|moderate,no +irr-pilot-181,t1_o9zskm0,ai_found_drug,3,folate|b12|ferritin,positive|positive|positive,strong|strong|strong,yes +irr-pilot-182,t1_oa2ue77,ai_found_drug,1,taurine,negative,moderate,no +irr-pilot-183,t1_od3hugg,no_ai_drug_random,0,,,,no +irr-pilot-184,t1_odtq0ve,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-185,t3_1ru8fur,ai_found_drug,1,pepcid,negative,strong,no +irr-pilot-186,t1_oae5dtd,no_ai_drug_random,0,,,,no +irr-pilot-187,t1_oa720d8,ai_found_drug,1,mucinex,positive,weak,no +irr-pilot-188,t1_oav04vi,no_ai_drug_random,0,,,,no +irr-pilot-189,t1_oa76yku,ai_found_drug,1,intravenous immunoglobulin,mixed,strong,no +irr-pilot-190,t1_oc3ru2f,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-191,t1_oa6sxwb,ai_found_drug,2,protein|salt,positive|positive,weak|weak,no +irr-pilot-192,t1_oa32q4m,ai_found_drug,1,kpv,positive,weak,yes +irr-pilot-193,t1_obzeqdk,no_ai_drug_random,0,,,,no +irr-pilot-194,t1_oa6cwl3,ai_found_drug,1,low dose naltrexone,positive,strong,yes +irr-pilot-195,t1_oekppar,no_ai_drug_random,0,,,,no +irr-pilot-196,t1_occ02q7,no_ai_drug_random,0,,,,no +irr-pilot-197,t1_obohy08,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-198,t1_oa2wub9,ai_found_drug,1,taurine,positive,strong,yes +irr-pilot-199,t1_oewf6sg,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-200,t1_o9ylcpv,no_ai_drug_random,0,,,,no +irr-pilot-201,t1_od2bkbf,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-202,t1_oe6ax51,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-203,t1_oa5qjnc,ai_found_drug,1,vitamin d,positive,weak,no +irr-pilot-204,t1_oe1lc9w,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-205,t1_oab53go,ai_found_drug,3,vowst fmt|fecal microbiota transplant|antibiotics,negative|negative|mixed,strong|strong|moderate,no +irr-pilot-206,t1_oa6hqgy,ai_found_drug,1,spermidine,positive,moderate,no +irr-pilot-207,t1_oa2fjkl,ai_found_drug,1,taurine,positive,weak,yes +irr-pilot-208,t1_o9ycceg,ai_found_drug,1,low dose naltrexone,positive,strong,yes +irr-pilot-209,t1_oa44e5d,ai_found_drug,1,low dose naltrexone,negative,moderate,yes +irr-pilot-210,t1_oepezqw,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-211,t1_o9y710g,ai_found_drug,1,progesterone,mixed,weak,no +irr-pilot-212,t1_oa2431p,ai_found_drug,2,local anesthetic|stellate ganglion block,positive|positive,weak|moderate,no +irr-pilot-213,t1_oa9l1d8,ai_found_drug,1,tirzepatide,positive,strong,yes +irr-pilot-214,t1_oa0fuko,ai_found_drug,3,calcium akg|mast cell stabilizer|ketotifen,positive|positive|positive,weak|strong|weak,yes +irr-pilot-215,t3_1rsrfe2,ai_found_drug,1,acupuncture,positive,weak,no +irr-pilot-216,t1_odx2k7f,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-217,t1_obeoyvy,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-218,t1_obqunzp,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-219,t1_oa3m30z,ai_found_drug,1,pyridostigmine,positive,strong,no +irr-pilot-220,t1_oa3c1ma,ai_found_drug,1,nad+glutathione,positive,weak,yes +irr-pilot-221,t1_ob9b8vm,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-222,t1_oa40a8o,ai_found_drug,7,peptides|bpc-157|ghk-cu|nad+|mots-c|kpv|tirzepatide,negative|negative|negative|negative|negative|negative|negative,strong|strong|moderate|weak|strong|weak|strong,yes +irr-pilot-223,t1_odifv40,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-224,t1_of846dl,no_ai_drug_random,0,,,,no +irr-pilot-225,t1_oa5nget,ai_found_drug,3,azithromycin|z pak|antibiotics,positive|positive|positive,weak|weak|strong,no +irr-pilot-226,t1_oa13hl7,ai_found_drug,8,peptides|bpc-157|ghk-cu|nad+|ss-31|mots-c|kpv|tirzepatide,mixed|negative|positive|positive|positive|positive|positive|positive,strong|strong|weak|weak|weak|weak|weak|weak,no +irr-pilot-227,t1_odsk56h,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-228,t1_odx09t4,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-229,t1_oamwinp,ai_found_drug,1,pepcid,mixed,moderate,yes +irr-pilot-230,t1_oavkzfu,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-231,t1_od4zn1f,no_ai_drug_random,0,,,,no +irr-pilot-232,t1_ocpf70u,no_ai_drug_random,0,,,,no +irr-pilot-233,t1_obh40a7,no_ai_drug_random,0,,,,no +irr-pilot-234,t1_oefxfer,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-235,t1_oa6p1tf,ai_found_drug,1,iron,neutral,weak,yes +irr-pilot-236,t1_oeilbik,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-237,t1_o9xpw0s,ai_found_drug,1,solaray,positive,moderate,yes +irr-pilot-238,t1_o9x86ds,ai_found_drug,2,compounded ketotifen|pepcid,positive|positive,strong|strong,yes +irr-pilot-239,t1_oajfpl5,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-240,t1_oaa1x7k,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-241,t1_oa5russ,ai_found_drug,1,taurine,positive,strong,no +irr-pilot-242,t1_oakvcyb,no_ai_drug_random,0,,,,no +irr-pilot-243,t3_1rr78uq,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-244,t1_oem4kio,no_ai_drug_random,0,,,,no +irr-pilot-245,t1_oemch8j,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-246,t1_oaa0j22,ai_found_drug,1,acupuncture,positive,weak,no +irr-pilot-247,t1_oeireky,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-248,t1_oa3khq9,ai_found_drug,1,tirzepatide,positive,strong,no +irr-pilot-249,t1_oamz3as,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-250,t1_oa4l9yx,ai_found_drug,1,low dose naltrexone,positive,strong,yes +irr-pilot-251,t1_oa5m8re,ai_found_drug,1,ivermectin,positive,strong,yes +irr-pilot-252,t1_oa9f91m,ai_found_drug,1,tirzepatide,mixed,moderate,yes +irr-pilot-253,t1_oa5cmod,ai_found_drug,2,abilify|antidepressants,negative|negative,moderate|moderate,no +irr-pilot-254,t1_oa6gyw2,ai_found_drug,1,ssri,negative,strong,no +irr-pilot-255,t3_1s9y02a,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-256,t1_oce7in6,no_ai_drug_random,0,,,,no 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+irr-pilot-279,,,,,,, +irr-pilot-280,,,,,,, +irr-pilot-281,,,,,,, +irr-pilot-282,,,,,,, +irr-pilot-283,,,,,,, +irr-pilot-284,,,,,,, +irr-pilot-285,,,,,,, +irr-pilot-286,,,,,,, +irr-pilot-287,,,,,,, +irr-pilot-288,,,,,,, +irr-pilot-289,,,,,,, +irr-pilot-290,,,,,,, +irr-pilot-291,,,,,,, +irr-pilot-292,,,,,,, +irr-pilot-293,,,,,,, +irr-pilot-294,,,,,,, +irr-pilot-295,,,,,,, +irr-pilot-296,,,,,,, +irr-pilot-297,,,,,,, +irr-pilot-298,,,,,,, +irr-pilot-299,,,,,,, +irr-pilot-300,,,,,,, diff --git a/docs/irr_pilot/coding_input.csv b/docs/irr_pilot/coding_input.csv new file mode 100644 index 0000000..39af6b3 --- /dev/null +++ b/docs/irr_pilot/coding_input.csv @@ -0,0 +1,4774 @@ +sample_id,subreddit,post_date,unit_type,title,parent_context,post_text +irr-pilot-001,covidlonghaulers,2026-04-05,comment,,"[Upstream reply] +I can drive safely about 20-30 minutes. Id say, with naps and breaks, about an hour per day, with multiple stops. My range of motion is now super limited (and therefore my kid's ...) + +Ironically my favorite thing in the world was road trips. So there goes that. + +--- + +[Upstream reply] +I wish I could drive even that much :/","Dont get me wrong, if i drive that much, then it's the only thing i do that day! Once i took my kid on vacation to an amusement park 1h10 minutes away. Had to spend a night in a motel 15 minutes away from the park on the way there, and again on the way back. Sigh." +irr-pilot-002,covidlonghaulers,2026-04-02,comment,,"[Upstream reply] +Do you have nerve damage? + +--- + +[Upstream reply] +Not that I’ve been told",I'm wondering about histamine issues. I've had trouble with speech and I think it's related to histamine issues - when my histamine levels are really high I feel almost high +irr-pilot-003,covidlonghaulers,2026-03-12,comment,,"[Parent post: Taurine supplementation as a therapeutic strategy for cellular senescence and chronic inflammation in long COVID: a systematic review and meta-analysis - PubMed] + +--- + +[Upstream reply] +This is significant and I thank you for sharing. +Any taurine-takers care to validate their own experience vs the literature?","I’ve got neuro-style Long Covid for years with brain fog and PEM. I’ve been taking this type of dose of Taurine for some time. I think it helps a bit, but I can’t speak to any large effects. The effects are smaller than the daily variation in my symptoms. But that is my experience with all supplements generally. + +One thing I can say specifically it can reduce jitters from coffee." +irr-pilot-004,covidlonghaulers,2026-03-13,comment,,"[Parent post: LDN (Concerned to try)] + +My main symptoms are fatigue, PEM and some dizziness. Nervous system is out of wack too at times. This has been going on for about 14 months. + +I just got LDN. Is it worth it and tell me your experience?","Good experience for me, it got me unstuck / kickstarted my progress. I started LDN when I was at my absolute worst, very severe, unable to do anything. Started very very low, increased very very slowly, and everything went well. I'm not sure how much it's still helping at this point, I stopped increasing, because I've moved on to other interventions (nervous system work) that is giving me much progress." +irr-pilot-005,covidlonghaulers,2026-03-18,comment,,"[Parent post: Lower levels of protective nasal bacteria (D. pigrum, Corynebacterium species) were linked to developing long COVID. Antibiotic use associated with depletion of these protective bacteria. Samples taken during infection and 3 months later in longit. cohort study.] + +A longitudinal 2026 study analyzed the nasopharyngeal (upper respiratory) microbiomes of COVID-19 patients during their acute infection and at a 3-month follow-up. Researchers discovered that patients who later developed Long COVID (PASC) had significantly lower levels of specific protective commensal bacteria, namely *Dolosigranulum pigrum* and certain *Corynebacterium* species. Furthermore, patients treated with antibiotics during acute COVID-19 showed severe depletion of these beneficial bacteria and were associated with a much higher likelihood of developing Long COVID. + +**The Biological Mechanisms (Key Findings):** + +* **Depletion of Protective Commensals:** Overall nasal microbiome diversity did not drastically differ between groups. However, specific species mattered immensely. Patients who progressed to Long COVID had significantly lower abundances of *Dolosigranulum pigrum* (-3.98 LogFC) and *Corynebacterium propinquum* during their acute infection compared to those who fully recovered. +* **The ""Gatekeeper"" Consortium:** Network analysis revealed that these specific bacteria form a cooperative, protective cluster. *D. pigrum* and *C. accolens* exhibit strong negative correlations with opportunistic respiratory pathogens (like *Klebsiella pneumoniae* and *Acinetobacter*). By occupying these niches, they act as mucosal ""gatekeepers"" that prevent pathogen overgrowth. +* **Immune Modulation vs. Lung Damage:** Prior experimental data show *D. pigrum* helps modulate inflammatory cytokines to resolve inflammation efficiently. The authors hypothesize that a deficiency of these bacteria leads to unrestrained, immune-mediated lung damage during acute COVID-19, which is a known major predictor of Long COVID. +* **The Antibiotic Penalty:** Severe COVID-19 patients treated with antibiotics showed significantly reduced levels of these key protective taxa. Correspondingly, antibiotic-treated patients had substantially higher odds (OR 7.80) of developing Long COVID. This suggests that antibiotic-induced microbiome disruption exacerbates susceptibility to post-acute sequelae. + +**Potential Implications:** + +* **Microbiome-Based Prognostics:** Swabbing a patient's nose during acute infection to check for the presence of *D. pigrum* could eventually serve as an early predictive biomarker to identify patients at high risk for Long COVID. +* **Targeted Respiratory Probiotics:** The data provides a mechanistic rationale for developing respiratory probiotics. Administering *D. pigrum* or its metabolites as a nasal spray during or after acute infection could potentially restore mucosal homeostasis and prevent the inflammatory damage that leads to Long COVID. +* **Strict Antibiotic Stewardship:** This study reinforces the danger of prescribing unnecessary antibiotics for viral infections, as wiping out the respiratory microbiome's ""gatekeepers"" may directly facilitate Long COVID pathogenesis. + +**Patient Impact:** + +* **Validation:** This provides a concrete biological explanation for why some people might be more susceptible to Long COVID based on their baseline mucosal health and the specific medical treatments (like antibiotics) they received during the acute phase. +* **Actionable Status:** This is observational research, and there are currently no clinically approved nasal probiotics for preventing Long COVID. However, it strongly reinforces the medical consensus to avoid unnecessary broad-spectrum antibiotic use during viral infections. + +**Study Limitations:** + +* **Observational Design:** The study establishes correlation, not direct causation. It cannot definitively prove whether the lack of commensal bacteria *causes* Long COVID, or if patients who are generally sicker simply have poorer microbiomes and require more antibiotics due to superinfections. +* **Small Sample Size:** The cohort was relatively small (107 COVID-19 patients total), which led to wide confidence intervals, particularly in the antibiotic and PASC sub-analyses. + +--- + +[Upstream reply] +Interesting, thankfully there are ways to help prevent nasal colonization by covid that should help here too + +Azelestine spray, iota carrageen nasal spray, or even just plain old ethanol in a vicks steamer all will work","I knew I read somewhere about xylitol spray and here it is: + +https://pmc.ncbi.nlm.nih.gov/articles/PMC9395150/" +irr-pilot-006,covidlonghaulers,2026-03-22,comment,,"[Upstream reply] +What is limbic retraining and how did you come across it? +And which antioxidants were you taking? +I currently take vitamin b complex which is mostly methylated b vitamins - is this sufficient? +Sorry for all these questions I’m willing to try anything to improve! + +--- + +[Upstream reply] +Yeah, methylated b vits is the methylation support, spot on. in terms of antioxidants, I'm taking vitamin C powder but very importantly with calcium and magnesium ascorbate, as that makes it easier on the gut and also helps bind the oxalates to avoid kidney stones (for those vulnerable to that). The limbic retraining I did was modelled after an approach Patrick Ussher wrote about in ""POTS: What It Really Is & Why It Happens"" (it's on Kindle). It was how I got out of the depression and trauma loop the LC had me in. Helped to sooth the otherwise constant fight/flight hypersensitivity, anxiety, and threat (cell danger) response I was stuck in. At first I did hours of letting my imagination indulge in thoughts of activities I otherwise couldn't do. Convinced myself/my senses I was living through them to help alter my body chemistry and upregulate neurotransmitters (the good stuff.) While many people make fun of these techniques or simply dismiss them, they were so effective for me that within three months I was able to go from couch ridden to flying from Europe to Asia to enjoy a one year student visa in Thailand (lived cheap and regained my agency, my freedom to experience life, just like I'd imagined for hours on end.) No one thing I've mentioned was a silver bullet but rather it all worked together. The stabilising meds, the vitamins, the diet (Mediterranean keto without wine) and intermittent fasting, the limbic retraining, the hope of living again, and later the probiotics and methylation support. I also depended on my faith a lot, but that's another subject. Looking back, I keep thinking about how LC is a black hole of covid induced damage that one has to somehow build up enough escape velocity to break free from its grasp. I just kept stacking anything that gave me even a little momentum until one day I found myself literally flying away and emotionally/physically breaking free from that miserable hole that wanted to swallow me up. Don't let it do that; your spirit of willingness to try whatever works is the key. Even ignore logic and reason if necessary, cling onto unreasonable and unscientific faith if that's what it takes. Just never give up","Thank you I’ll look that up on kindle. +I take vitamin c in the morning and magnesium glycenate at night. Are you meant to take them together at the same time? +I don’t take calcium, is that an issue? +Could you tell me what probiotics helped your gut issues? +Everyone keeps talking about LDN as well, it helps some people but not others. But I’m sceptical to try it, I mean with my MCAS I get side effects/bad reactions to so many things that I’ve gone off trying anything new now." +irr-pilot-007,covidlonghaulers,2026-03-17,post,Pattersons Protocol,,"Contemplating to try maraviroc plus statin protocol but my current PCP and LC specialist I’m seeing both not willing to try it, saying there is no definitive efficacy. + +Any recommendations to find doctors in the US (even virtually) who more open to try experimental treatments with LC?" +irr-pilot-008,covidlonghaulers,2026-03-12,comment,,[Parent post: Taurine supplementation as a therapeutic strategy for cellular senescence and chronic inflammation in long COVID: a systematic review and meta-analysis - PubMed],I think this and NAC both contributed to the downward spiral in my gut. I stopped completely ; pay attention if you have dysbiosis and leaky gut +irr-pilot-009,covidlonghaulers,2026-03-12,comment,,"[Parent post: Relapse (?) LC all over again after being okay for 2 years?] + +My LC/ME/CFS...whichever you call...first started in 2022 after I caught covid and the flu back to back and got really sick. + +I won't list all the symptoms I had because most of you know what it's like already. All the tests and clean results blah blah. Nothing helped but time. I struggled badly for about 1.5 to 2 years and then finally I got to a point symptoms started to be less severe or to disappear. 2024-2025 wasn't as bad. I wasn't exactly healthy and it wasn't an ideal life but I could live somewhat like a person again. The worst has passed. I accepted and I adjusted. + +And then at the end of January 2026 (this year), I developed a weird headache and random body aches. I don't know what exatly caused them. I did travel overseas for 10 days and moved house in January. Sure it was physically demanding and mentally stressful but after that 1.5-2 years point, I never really had flare ups or relapses even after exertion any more - I've travelled and done physically damnding work many times without crashing. So I thought the headache and body aches would go away if I rest for a few days, or maybe a couple weeks. Two months have passed. Things got worse even though I aggressively rested A LOT for two months. Now in March, my fatigue & chest pain are as bad as it was when my LC first started in 2022. And this excruciating headache and random sharp muscle pain-like body aches all over my body are new - I didn't have them in 2022-2023 - and they seem to be here to stay long term. I test for covid often bc obviously I'm traumatised and I wanna keep track of any re-infections and I did not have covid since June 2024. I only had short and brief minor colds here and thete since LC started and they didn't even give me relapse or flare ups as long as I can remember. + +I went to the doctor this week and got all the basic tests done. Found nothing. This is LC/ME/CSF all over again, after being okay for 2 years 😭😭😭 + +I'm not really looking for anything specific by writing this. Similar experience, analysis, words of comfort, recommendations or advice, I don't know. I know only time would help if anything would at all. I just have to live with it like I did back in 2022-2023. I guess I just wanted to vent... this sucks 🥲🫠","Silver lining, you got to go back to normal for 2 years so there's a far better chance for you of it happening again. I've either remained at the same level or worsened over 4 straight years so there's no real light at the end of the tunnel for me. Even recently had to get an ablation just to keep ""playing"" hockey (started getting SVT sometimes over last 2ish yrs on top of the typical breathing problems)." +irr-pilot-010,covidlonghaulers,2026-04-05,comment,,"[Parent post: Recovery Story So Far] + +**My Recovery Story** + I am in my late 30’s and I am a female.  I consider myself about 65-70% recovered. I was never completely housebound, but very close at one time. To be honest, I gaslighted myself for a long time. I convinced myself that what I was experiencing was the fatigue of motherhood, psychological and “not that bad.”  If I had not believed in some way that I was “weak” I would have been in bed daily and definitely housebound. I continued to parent and  work through unbearable pain and neurological symptoms. I would never ever EVER want someone to feel the way I did for so long. My biggest regret is not believing my own pain sooner. It took me three years to accept that I was really sick and that if providers did not believe me or found me credible, then I had to find a provider that would. +What ails me these days is significantly reduced, while I am not yet able to return to the life I knew. I became a mom  for the first and last time while unknowingly harboring severe endometriosis and Long Covid. It has been a cruel and devastating chapter of my life.  What holds me back from , let's say 100% recovered, is I still cannot play soccer again or run long distances without consequences(increased fatigue, soreness that feels like being poisoned, and tachycardia). I am still very sensitive to weather changes, cold intolerance, and lower energy. And it hasn't been enough time feeling the 70% recovered for me to be convinced that my latest theory is correct. +I contracted Covid19 in December 2020. I recovered from symptoms in about two weeks. A monthish later I received the vaccine. My illness experience started with chronic sinus infections but those were remedied by a deviated septum surgery. I never got a sinus infection again. +I then had a bowel obstruction one month after the surgery. After a long course of antibiotics and narcotics, I attributed the lowered motility and bowel obstruction to the drugs and/or complications from a previous abdominal gunshot wound over a decade prior. +Unfortunately I  developed severe constipation that has troubled me until recently. Which leads me to my latest conclusion, the gut is the opening for Long Covid for me. It is where my journey  really began and hopefully will end. More on that later. + +**Here is my symptom list:** +Constipation(moderate to severe, varying types) +Vascular Compression syndromes +Bloating +Cramping +Air hunger +Skin legions +Cold extremities +Weak Legs +Headaches +Stiff neck +Pelvic Pain +Back pain +Just severe pain from waist down +Urinary discomfort +Hemmoroids +Brain fog +Cognitive impairment(lowered executive function, fatigue, reduced problem solving ability, reduced processing speed, reduced auditory processing ability, depresonalization/derealization, loss of inner dialogue,loss of skills/knowledge, inability to communicate, word finding issues, short term memory dysfunction, poor recall, overstimulated by mundane things like eye contact/light/weather changes/screens) +Unrefreshing sleep +Insomnia/ Hypersomnia +Unstable blood pressure +Dizziness +Tachycardia +Reactions to food, alcohol,  temperatures, morphine and other medications +Abdominal pain +Body pain +Lowered hormone profile +Iron deficiency +Stretchy veins +Hair loss +Depression +Rage +Ahdoneia +Obsessive thinking +Unintended weight loss +Swollen lymph nodes +SIBO/IMO +Endometriosis(despite a lack of history of painful periods, none observed on imaging and no pelvic pain prior to Covid) +Exercise intolerance +All kinds, types of fatigue +Wired, but tired +Post exertional malaise primarily from cognitive functioning +Reduced cognitive stamina +Vision changes +Inability to focus eyes +Gut dysbiosis + + +And more. + +**Here is my timeline of symptoms:** + +**December 2020**\- Infected +**January-May 2021**\- Chronic Sinus Infections, +Anxiety amping up , I look back and notice I had reduced ability to feel soothed. +**June 2021**\- Large bowel obstruction, neg. colonoscopy +Bloating, intense GI pain after eating, increasing obsessive compulsive thinking, intense anxiety like I have never had. Leg weakness begins. +**May 2022**\- Horrible post-partum experiences. Intense mood swings, increasing pelvic pain, difficulty breathing, dizziness, pre-syncope, POTS like symptoms +**Oct 2023**\- Hospitalized for sepsis, constipation most severe, fatigue and cognitive symptoms begin to accumulate. +**2024**\- Worst year on record. So much physical therapy. Pelvic Floor therapy as well. Cognitive impairment is destroying my sense of self, my work, and my relationships. I get a psychological evaluation thinking maybe I have ADHD that I can no longer manage. Seeing my IQ be valued so low, wrecks my self-esteem. From this point, every 3-4 months I was in the ER for impaction, severe constipation and excruciating pelvic pain. +**September- December 2024**\- Diagnosed with SIBO/IMO, pelvic floor dysfunction, dyssynergic dysfunction, and slow motility. Antibiotics and prescription laxatives. +**January 2025**\- Pelvic pain intensifies, air hunger, cognitive impairment all at their worst. I lose inner dialogue, ability to make eye contact, and struggle to have social interactions outside of restricted, predictable patterns. +**February 2025**\- Lowest point. Cannot breathe sitting down, pelvic pain evokes screaming but taking opioids or NSAIDs trigger worsening cognitive symptoms. Feeling unreal, a strange sense of time, alienated and alone. Suicidal. +**March 2025**\- A doctor finally believes me and says she thinks I have POTS. In pursuing that diagnosis I learn more about chronic illness and begin tracking my symptoms to look for any patterns. A gynecologist dismisses MY DISMISSAL about endometriosis and says its time to check that “it's not a zebra.” I mentioned in the appointment , “ maybe it's the zebra but I am starting to think I have endometriosis.” +**April 2025**\- I meet with an endometriosis specialist who believes I am a candidate for laparoscopic exploratory surgery and that I have endo. +**May 2025**\- Meet Dr. Robert Redfield, tell him I am checking my iliac vein for compression as I believe its contributing to my air hunger. He agrees and confirms I have Long Covid. +**June 2025**\- Venogram confirms MayThurner Syndrome, 92.6% compressed left iliac vein. The vascular doctor does not think the stent will improve anything but my pelvic pain, not my dysautonomia or air hunger. I decided to wait after the endo surgery. +**July 2025**\- Endo excision surgery and hysterectomy. Some pain disappears completely. Most of the pelvic pain worsens. +**August 2025**\- Stented for May Thurner, left iliac. After 3 weeks of pain and mast cell  HELL, most of my pelvic pain is gone as well as 75% of my dysautonomia. +I begin Maraviroc, Rapamycin and Pepcid for cognitive dysfunction +**September 2025**\- Feeling my mind come back but have hormone dysfunction(night sweats etc). Begin HRT and feel even better. +**December 2025**\- Begin to fatigue and crash. Low mood, low ambition, losing ability to get out of bed. +**January 2026**\- Venogram confirms Nutcracker Syndrome,78% compression. +**March 2026**\- Stented for right iliac vein, 93% compression, relieves all pelvic pain(excluding GI related nerve pain), and no more breathlessness!!! +Discovered that antibiotics and iron supplements gave me my energy back, plus the highest cognitive function I’ve had since 2020. +BiomeSight(February sample) confirms that a dysbiosis exists and would respond to some tweaking. + + + +**Helpful Tests** +\-Rheumatology- all the panels ruled out autoimmune for me +\-Allergy- Ruled out full blown MCAS +\-Venogram and IVUS caught compression syndromes +\-Laproscopic Exploratory(Endo confirmation) +\-Blood work to rule out so many things + +**Here are my treatments in chronological order that were positively impactful:** +\-SIBO/IMO- Antibiotics +\-Tirzepetide(Helped some mast cell related pain/inflammation) +\-Endometriosis Excision/Hysterectomy +\-Nicotine Patch 7mg 1 x day(Temporary relief) +\-Nattokinase(Temporarily effective) +\-Bilateral Iliac Stents for May-Thurner Syndrome +\-Eliquis 5mg 2x day +\-Adderall 10mg XR +\-Antivirals and Antihistamine Regime-Marviroc 300mg 2x day, Rapamycin 1mg 1x Day, Pepcid 40mg 2xday, Ketotifen 1mg daily +\-HRT(Estrogen Patch.75mg, Testosterone cream 5mg daily, and progesterone 50mg cream daily) +\-Supplements are most effective when administered in the right order. +1) Anticoagulant, 2) Antivirals and crew(see above)(3) Vitamins and Minerals(EstherC, Vitamin C, Magnesium Glycinate 400MG and Theronate(400Mg), B2 400mg, Creatine 10mg,Choline 1200mg, Mag. Citrate 200mg, Fish Oil, Iron Bisglycinate 50Mg 2x day , B12 Hydroxocobalamin (4) Sunfiber/Gluten Free Diet/Reduced dairy/sugar + +**Specialists that were helpful** +\-Dr. Curtin, Neurogastrology, For the Sibo/IMO +\-Dr. Robert Redfield, Infectious Disease +\-Dr. Andrew Buscemi, Family Medicine +\-Dr. G at Center for Vascular Medicine, interventional cardiology +\-Dr. Audlin , gynecological surgery (Endometriosis Speciality) +\-Dr. Ericka Nichelson- Hormones, Gynecology + + + +**My dysautonomia symptoms and air hunger were 90% eliminated by the bilateral stents in my iliac vein.** The final 10% feels mast cell dysfunction related. The stents also reduced my pelvic pain, as well as the endo excision surgery. + +What has been the most stubborn to treat has been the fatigue, ongoing cognitive issues, constipation, and abdominal/pelvic pain. After 5 years of this, I was close to giving up even though I had  come so far. The Maraviroc/Rapamycin gave me back much of my social brain, language, and increased my stamina. But my body was heavy, my mood  was low, I had no energy to fuel my thinking. + +On 2/22 I submitted a sample to BiomeSight. Before that test result came back, I saw Dr. Buscemi for a UTI. He prescribed Levoquin and encouraged me to take iron supplements for my ferritin level of 41. In the past, my ferritin had been even lower at 30-33. He said that optimized levels would be nearer to 100. + +Once on the antibiotic and iron supplements, I had the best week I had in YEARS. Aside from some flank pain from Nutcracker Syndrome(renal vein compression), I had my brain almost completely back and I could get out of bed. I was motivated and my mood improved. And after five years, I had the urge to poop, without pain, without strain, and I was regular(1xday). + +Then I got my BiomeSight results back. Top suggestions for my gut? + +Antibiotics and Iron Supplements. + +It also suggested reducing fiber, wheat, dairy, yogurt, and all probiotics. Which lined up with my past experience of worsening symptoms. + +My jaw hit the floor. + +Gut dysbiosis and ferritin symptoms were causing my most stubborn symptoms? + +I am off the antibiotics now but still supplementing iron. I had no idea that iron also fed bacteria in the gut. So I will be following my gut, pun intended, for the rest of this recovery. I plan to continue supplementing iron and submitting another sample in 4-6 weeks to check on the microbiome. I am focusing on resistant starches, Sunfiber(PHGG), and avoiding wheat/gluten. I did order trybutin( prebiotic) to hopefully help stimulate more butyrate producing bacteria growth(I run low on these). + +It has helped me to use my symptoms as data throughout this process. The symptoms never lie. They may not make sense, but they are valuable and worth reconciling into a theory. When in doubt, get more data. Take the data and keep thinking, obsessing, and searching it. I must have spent thousands of hours thinking about my illness/symptoms. I kept reading and reading until some pattern would emerge that I could chase down. I heard about iliac vein compression contributing to POTS symptoms from a podcast. I chased down this lead because I knew I didn’t have an “immune/allergic profile.” I didn’t line up with MCAS and I was ruled out by rheumatology for anything autoimmune. So I figured the cause really could be vascular for me. And it was!! I knew that the microbiome was important to recovery but I avoided it until I absolutely had no choice. I wish I had worked on it earlier but it would not have helped my air hunger and pelvic pain. From my insane amount of Reddit lurking, I knew that ferritin was a tricky thing for primary care. Some levels may be “normal” but not optimized  and therefore cause significant illness. + +I really credit my recovery to living in a great area for Long Covid, my treatment team, and my stubborn obsession with recovering. I research every single day. Everyday I read about illness and the experiences of others. When I couldn’t read, I listened to podcasts in the dark. It gave me a brain trust, a collective knowledge, to reference when making treatment decisions. +Beware of the Cassandra effect. Knowing something is true and knowing intensely that something is wrong, *is not enough to be heard and understood*. I needed so much strategy, data, and written communication to be successful in our medical system. It is not fair that it is this hard, but it is the reality. My memories of mistreatment while incredibly vulnerable will haunt me forever. + +I hope this was helpful to someone somewhere. This is not the whole story, it is missing the many supplements tried, the many negative tests, the grief and loss, the identity crumbling, the lost relationships, and the spiritual rebirth I experienced. This is simply the rundown on how I recovered and feel that I will continue to do so. + +My story can also be found at Long Covid Carls on YouTube. I have no interest in promoting myself but for the more personal retelling, that’s where you can hear more. + +Many, many thanks to this community. I would be lost or dead without it. I try to give back as much as I can, hastily between parenting and running a business, but I will not stop giving back to the people that were there for me.","How is your stiff neck and tachycardia now? I have a vascular compression syndrome too, MALS, but unfortunately it’s surgery to release the ligament not stents, and worse still it can relapse. I will likely do it though in the hope of relief. Also some MTS compression on both sides, but maybe not enough for them to stent" +irr-pilot-011,covidlonghaulers,2026-03-12,post,temperature regulation anybody please,,"5 years i still have unbearable chills and hot flashes. i have “autonomic dysfunction” “ibs” “anxiety depression” etc. + +what can i do for the temperature regulation i havent enjoyed a shower in 5 years its literally painful to go in and out of it. + +i think smoking weed helped a little but i cant cuz my mental health & also makes my stomach & anxiety worse. + +idk what to do anymore if i can fix this one symptom ill deal with the rest but i cant do this one and its the one with no good medicine or remedy its so horrible man i was so ignorant to it before i would never think temperature issues would be this uncomfortable or painful but i guess anything after 5 years would prob drive anyone crazy" +irr-pilot-012,covidlonghaulers,2026-03-13,comment,,"[Upstream reply] +I've been using Gemini and Claude since last acute infection. They do make stuff up, have to be vigilant, but I've been making much better progress than after prior two infections. Two new antihistamines that don't aggravate an unrelated medical condition, combined with some different supplements and IR light, aimed at (1) trying to improve immune profile based on cytokine panels and some other blood work and (2) improve mitochondrial function. For others here, if you can handle the screen time/prompting and take results with appropriate skepticism, this might be worth it. Peace & healing everyone. + +--- + +[Upstream reply] +Can you tell me which antihistamines can help?","Currently taking Cimetidine, trying to bring IL-10 and (iirc) IL-6 down, plus Allegra. Took famotidine and levoceterizine previously, they seemed to help but aggravated some unrelated stuff. Blood work later this month to see if it's helping. AI seemed to think I was dealing with EBV and maybe HHV6 reactivations with a ""wet blanket"" immune system. + +We'll see how it goes. Could turn out to be a dead end." +irr-pilot-013,covidlonghaulers,2026-03-15,comment,,"[Parent post: To all successful GLP-1 users:] + +Could you please briefly share your experience for anyone who wants to try it? Tell us... +* which product you're using, +* how much, +* how long, +* and from which week of use you started to feel it helping ❤️ + +That would be great for us to get a general idea. +Thanks + +--- + +[Upstream reply] +14 weeks at 2.5 and it lowered my baseline.","Yeah I came off tirz after my second micro dose made me feel like I was on my death bed, and also made heavyness and body aches worse" +irr-pilot-014,covidlonghaulers,2026-03-13,comment,,"[Parent post: Mystery virus put me in a bad long Covid fatigue flare up: help.] + +Hey guys about 15 days ago I came down with a mystery virus. I tested negative for everything. I had pretty bad bronchitis for about ten days. Finally the coughing is almost gone. I am still coughing up clear mucus. Most of my viral symptoms are gone, and now I am left with this extreme fatigue. I am so exhausted. I can barely do anything earlier today. I was taking a shower and I felt like I was gonna blackout how long until my baseline gets better. This shit is so stupid. I hate it for reference. I have a mild baseline right now. I feel like I’m in hell with the capital H. + +--- + +[Upstream reply] +I currently am fighting my SECOND round of MHPV. I am in northern California where it is running rampant right now. This round I am pretty sure i have bronchitis from it. + +Just prescribed +Clarithromycin every 12 hours 7 days +Prednisone + +Coughing up a tiny bit of blood but most likely from coughing so hard. Have a follow up Dr appt in morning and finally feeling a bit better this evening. + +This stuff is nasty af. All I can say is sanitize your house so you don't get it again. It is transmitted by surface touch. I have been sick since Jan 21 with a one week break and caught it again. This shit is a nightmare. + +Drink lots of fluids. Alka seltzer cold and flu I LIVE BY! Also Mucinex D is a life saver. + +I am currently on oxygen, have been since covid 3 years ago. + +Get a stool for the shower. Best thing my sister bought me ever. And a shower head with a cord. Even on days I am wiped out, I can atleast shower my body. + +Lysol disinfectant spray if you do not have the energy to clean. And wash all your bedding. + +Hope you feel better.","Dude I’m in California too. + + +I was given z pak but I didn’t take it because my x Ray didn’t show pneumonia . I was also coughing up a little blood. + +Oh my that’s insane you got it twice!!!! This is nasty I’m over all these viruses" +irr-pilot-015,covidlonghaulers,2026-03-12,comment,,"[Parent post: Dream Team Peptide Stack for LC] + +Disclaimer: Not medical advice, just my personal experience for the past few weeks. + +Hola, my LC family. Thank you all for keeping me sane these past few years. This illness can be incredibly isolating and I am glad to have access to this community in what has undoubtedly been the most trying time of my life. + +Just wanted to drop in and share what’s been working for me for the past few weeks. + +From left to right: **Tirzepatide, Thymosin Alpha 1, TB-500, KPV, MOTS-C, SS-31, NAD+, GHK-Cu, BPC-157, and Epithalon.** + +Tirzepatide has definitely been a game changer. I think it has improved my mitochondrial function and lowered inflammation which is allowing everything else in my protocol to work better. + +If there is enough interest here, I can elaborate further on what my rationale has been for using these peptides, and the specific protocol I am following. I will also be posting about all the supplements, medications, and other treatments I have tried. + +My condition has improved so drastically that I have been going on 90 minute bike rides without crashing. In fact, I went on two such rides in a 12-hour window today. Brain fog has mostly elevated, and I feel hopeful for the future again. + +At one point, I was bedridden for a couple of months so it feels like I am coming back from the dead. + +Anyway, hope this information helps somebody here. Don’t hesitate to DM if you have questions. + +Wishing everyone peace and great health. Hang in there! 💪",I’m taking bpc157 and tb500 right now. I’m one week in and it’s making me feel like shit. Hoping that it’s short term pain for long term gain! +irr-pilot-016,covidlonghaulers,2026-03-13,comment,,"[Upstream reply] +Thanks for asking. IvIGs cause very significant physical fatigue and headaches. The treatment has had a substantial impact on my daily life and my ability to work. + +There are signs that the treatment may start to be effective, however, although I need to discuss them with my neurologist. Starting with the 10th infusion, there's a pattern of neuropathic pain decreasing to zero over the 7 days following an infusion, and of a subsequent, gradual wearing off effect until the next infusion. + +--- + +[Upstream reply] +Thank you for details! + +Do you have any POTS or dysautonomia as part of Long Covid? Do those get affected by IVIG? + +Does fatigue and headaches subside after few days or they stay present in between infusions?","No, no POTS, and only very limited dysautonomia. But the burning pain is so intense that I cannot sleep. + +Based on the article I referred to (see my separate answer to OP), I believe these symptoms can also potentially get resolved or attenuated by IvIG. + +The headaches come and go, but not often beyond a week after the last day of an infusion (unless I'm under stress, professional or otherwise). The fatigue stays although it tends to get somewhat better close to the next infusion..." +irr-pilot-017,covidlonghaulers,2026-04-03,comment,,"[Parent post: A rose by any other name...] + +Does anyone have any other names to call this dreadful disease that doesn't use the word COVID? + +I had to reassure a massage therapist who should know better just last week that my Long COVID wasn't contagious. She thought it meant I still had an active case of COVID-19. + +Other times, when I tell people I have Long COVID, I can see their eyes glaze over and they adopt an attitude of thinking I'm imagining it or exaggerating. Then they fire off a million interrogating questions that make it obvious they're skeptical. It's exhausting. + +I'm so sick of having something that has diminished the quality of my life so much misunderstood by so many people. We need a better name for it! Same for ""brain fog"". Fog implies it's mild and temporary. There's nothing foggy about it, it's a f'n brain injury! + +Is there some different name we can give this nightmare combo of conditions that conveys the hell we're living through? Something that honors our experiences and sacrifices? This truly is hell.",Why are you telling this personal medical info to people you are not close to? It’s none of their business. +irr-pilot-018,covidlonghaulers,2026-03-23,comment,,"[Upstream reply] +Just FYI, if you still have ovaries and don’t take hormonal medication, you still have a hormonal menstrual cycle even after a hysterectomy. What this message means is that the cyst in your left ovary is most likely a temporary ovarian follicle (so the fluid-filled ‘bubble’ that supports maturation of the egg cell) and not another type of cyst that may require medical supervision and/or intervention. + +So in summary, they’re saying that the cyst on your left ovary can’t explain your symptoms, so something else is going on. + +--- + +[Upstream reply] +She didn’t explain that at all and wants me to go back to the doctor who did my hysterectomy in fact to get “checked out”. I also don’t have fallopian tubes..","I want to piggyback on this comment as well, because their findings are not relevant to whether you have a uterus or fallopian tubes, or get a period. As the commenter said, unless you have a reason not to be, you may well still be ovulating, and it would show up like that on the scan. I’m sorry for your experience overall though." +irr-pilot-019,covidlonghaulers,2026-03-19,comment,,"[Upstream reply] +Sometimes I wonder if the antihistamines are a major contributor to the weight gain. There is published research that they can. And it's the one major change I made before the weight gain started. But if I don't take them, my MCAS gets out of control. A vicious cycle. + +--- + +[Upstream reply] +I blame most of my weight gain on antihistamines. Tried ceritizin, gained 8kg in two months. The gain stopped when I stopped taking it, but I never lost it. Gained another 6kg when I took Nalcrom, this eventually stabilized but it was impossible to lose, even after stopping it. Gained another 3kg when I started it again for a bit to see if it helped me while i was crashing hard. It's so clearly connected in me.","Same with me - been taking Zyrtec now for 4+ years. I tried switching to Claritin (fail) and then Allegra (another fail). But I'm not sure if it's really gonna be that different. Seems like these antihistamines just cause weight gain. I had NO weight gain at all in my first year of LC symptoms (starting with vax injury, then about 6-7 months of LC after April '22). My weight gain started exactly in line with when I started Zyrtec and Pepcid (Famotidine)." +irr-pilot-020,covidlonghaulers,2026-04-06,comment,,"[Parent post: How I cured my PEM (and CFS more or less)] + +tl;dr version: + +Vo2max training is linked with the highest chances of lowering all cause mortality. Thus longer lifespan. + +Covid has damaged us so any attempt to reverse this would be beneficial. Mitochondrial/metabolic improvement associated with vo2max training. + +Mitochondria responsible for energy production. So repairing that may help with energy (from my experience it did). + +I began exercise by running for 5 minutes using the 80% at zone 2, 20% at zone 5 protocol. So 4 minutes in zone 2 (80% of total duration of 5 minutes) and 1 minute in zone 5 (20% of total duration of 5 minutes). And I increased total duration by 1 minute whenever I felt comfortable. + +I experienced, by the end of it all, increased energy baseline. Curing my PEM. Psychological health benefits of feeling healthy. + +During it I experienced PEM at times. Circumvent this by employing boundaries/limits tactics. On a scale of 1-10 in intensity play at your boundaries (zone 2 is usually 2/10, zone 5 is 7/10) but never cross your limits (zone 2 is usually 3/10. Zone 5 is 8/10). Otherwise PEM is likely to occur. + +Getting through crashes I just endured. You make sure you're immobile and at that point it took me about 20 minutes for my body to return to homeostasis in serotonin (my theory as to why PEM at least effected me on a neurochemical level). + +Full Version: + +Here are 2 articles I found + +https://peterattiamd.com/how-does-vo2-max-correlate-with-longevity/ + +https://www.imrpress.com/journal/FBL/23/8/10.2741/4657 + +But I mainly listened to the long form of this podcast. + +https://www.youtube.com/watch?v=xuqURs4auc8 + +https://www.youtube.com/watch?v=z82GCNXdLAA + +https://www.youtube.com/watch?v=-6PDBVRkCKc&t=2s (look at 2 hours and 24 minutes. They talk about how zone 2 training improves mitochondrial functioning in the elderly.) + +There's also a mention of how smokers who had been smoking for 20 years were able to reverse the effects of damage to their lungs or something like that after some months/years of vo2max training. I remember the time they spent training being shocking considering how much damage they reversed in such a short period of time. I do not know if that is in this specific video so don't quote me this is very paraphrased. But it was definitely in one of the vo2max videos I saw when I dove into the whole topic. + +How I started: + +I basically saw a reddit post about how someone rehabilitated and cured their cfs (unsure if they had pem as well) by walking a little further each day than the day before and stopping at about his limits. And I also watched the above videos and bro theory'd out that ""hey, my body feels older than it should. Mitochondria contributes to our energy functioning. Let me improve my mitochondria. And if this is what contributes to a longer life and my health has been 'disrupted' by the events of this time period then any longevity lifestyle would be a way to balance out that damage if possible. Also if smokers can reverse that much damage to their lungs and there's any damage to my lungs I can reverse that as well."" + +Vo2max training is basically zone 2 for 80 percent of a set duration and zone 5 for the remaining 20 percent. + +So you run for 5 minutes, 4 of those minutes is in zone 2, the last minute in zone 5. + +Run for 10 minutes then 8 minutes is zone 2, the remaining 2 minutes in zone 5. + +When I first started exercising 3 years after getting covid and enduring long covid. I decided I was psychologically ready to go back indoors without a mask believing in my immunity. I joined the gym and I started weight lifting for 2 months before adding cardio (running) at the end of every workout. + +Weightlifting was not really an issue for me. Mileage may vary depending on the person. Running however was godawfully difficult. I started out with the total duration at 5 minutes following the vo2max protocol. So I did 4 minutes at a little stronger than a jog (zone 2) and the last minute all out sprint (zone 5). + +Eventually I bumped that up to 6 minutes duration total (so like 5 minutes zone 2, 1 minute zone 5) 7 minutes duration total, 8 minutes duration total, 10 minutes duration total, etc. + +I did this everyday for 6 days a week for 2 months. After that I saw significant improvements in my energy levels. An improved baseline I would say. And although I suffered from PEM through several of my runs it seems that PEM is now gone and I would contribute that to these cardio exercises. + +This is how I basically break it down. I write down the goal number of minutes per week of cardio I want to do. And then I divvy it up. + +60 min weekly cardio goal: + +48 min zone 2 +12 min zone 5 + +5 day regimen: +16 min zone 2 for 3 days +6 min zone 5 for 2 days. 2 x 2 x 2 min + +75 min weekly cardio goal: + +60 min zone 2 +15 min zone 5 + +5 day regimen: +20 min zone 2 for 3 days +7:30 min zone 5 for 2 days. 2:30 x 2:30 x 2:30 min + +90 min weekly goal cardio goal: + +72 min zone 2 +18 min zone 5 + +5 day regimen: +3 days zone 2 - 24 min +2 days zone 5 - 3 x 3 x 3 min + +Alternatively you can just pick a certain number of minutes every day and do the 80 percent zone 2, 20 percent zone 5 method. That's how I started out. + +But doing zone 5 everyday psychologically wears you down eventually. And I'm weigthlifting as well so I decided to split it up as show above. Where Instead of doing zone 2 and 5 everyday. You calculate how much zone 2 is necessary for 3 days to hit your target and how many zone 5 days are necessary to hit your target. And on zone 5 days you do however many minutes on (so right now I'm doing 2 x 2 x 2. Equaling 6 minutes total) and I run 2 minutes, walk 2 minutes, run 2 minutes, walk 2 minutes, run 2 minutes and I'm done. + +What I experienced: + +I'm going to speak mainly on cardio as weightlifting was fairly straight forward. It was difficult in it's own right but cardio is where the most improvement and difficulty came. + +I experienced deep depression at times following the zone 5 portion of my run. I mean crippling. Not as bad as during my LC years but still bad. I mentioned the whole oxygen circulation difficulty, leading to reduced serotonin and cardio depleting your oxygen thus your serotonin theory and I strongly believe that that's why after a zone 5 run I had such, honestly, wanting to cease living type depression. Not that I would realistically do anything about it, it was literally just I cannot chemically produce happiness right now because of the serotonin depletion. However thankfully the recovery from this usually took 20 minutes. Though it was a shitty 20 minutes. Very darkly shitty. + +I would push myself though. I wanted results asap. At this point I was still in my PTSD state I believe so I think that was fueling me. + +That's another thing to mention actually. From my experience my PTSD manifested in an unhealthy need to be as fit and healthy as possible. Both aesthetically and physically. I thought that if I looked healthy, like visibly aesthetic and physically strong I would lessen the chances of sickness. Which is true. But I was obsessive about it and that resulted in physical injuries that could've been avoided as well as PEM through zone 5 cardio when really I should've been pacing and stopping as soon as I hit my limits. + +That being said I do think that going through the crash process sped up my recovery. But I'd say it wasn't worth it. + +A great rule of thumb I learned is to keep in mind your limits and boundaries. + +So in terms of intensity on a scale of 1-10. Your boundary is where you feel comfortable playing around and your limit is what you absolutely do not cross. + +So for zone 2 I run at about a 2/10 intensity and that's my boundary. 3/10 is my limit. + +For zone 5 I do 10/10 to the best of my abilities. But in hindsight (and eventually I did force myself to not go 10/10) the best way to do it would've been about 7/10 intensity is my boundary with 8/10 intensity being my limit. After a few 10/10 intensity sessions and the depression that followed early on I adopted the 7-8/10 intensity philosophy. Huh, thinking about it I guess I did switch to a lower intensity and I still recovered my physical health quite significantly. + +How I got through the crashes: + +I just suffered. You do your best to do absolutely nothing and rest when you crash. The 7-8/10 crashes were drastically more tolerable but still quite exhausting. If you stay at the 7-8/10 intensity you should be okay regarding crashes from my experience. Anything exceeding 8 you're really gambling and asking for trouble. + +What I experienced as a result: + +Improved baseline of physical energy. Deeper and healthier breathing. + +I would say that deconditioning was definitely a factor in the difficulty. But the hardest factors were the PEM's, fighting the fatigue and the most difficult imo is the poor circulation of oxygen in the body due to my whole RBC/endothelial dysfunction theory. + +tl;dr version - + +Vo2max training is linked with the highest chances of lowering all cause morbidity. Thus longer lifespan. + +Covid has damaged us so any attempt to reverse this would be beneficial. Mitochondrial/metabolic improvement associated with vo2max training. + +Mitochondria responsible for energy. So repairing that may help with energy production (from my experience it did). + +I began exercise by running for 5 minutes using the 80% at zone 2, 20% at zone 5 protocol. So 4 minutes in zone 2 (80% of total duration of 5 minutes) and 1 minute in zone 5 (20% of total duration of 5 minutes). And I increased total duration by 1 minute whenever I felt comfortable. + +I experienced, by the end of it all, increased energy baseline. Curing my PEM. Psychological health benefits of feeling healthy. + +During it I experienced PEM at times. Circumvent this by employing boundaries/limits tactics. On a scale of 1-10 in intensity play at your boundaries (zone 2 is usually 2/10, zone 5 is 7/10) but never cross your limits (zone 2 is usually 3/10. Zone 5 is 8/10). Otherwise PEM is likely to occur. + +Getting through crashes I just endured. You make sure you're immobile and at that point it took me about 20 minutes for my body to return to homeostasis in serotonin (my theory as to why PEM at least effected me on a neurochemical level).","I don’t think many with long covid can even walk and stay in zone 2, let alone run. Getting into zone 5 certainly triggers bad pem, if not catastrophic. The last thing I want to do is set myself up to be bed bound." +irr-pilot-021,covidlonghaulers,2026-03-12,comment,,"[Parent post: Taurine supplementation as a therapeutic strategy for cellular senescence and chronic inflammation in long COVID: a systematic review and meta-analysis - PubMed] + +--- + +[Upstream reply] +This is significant and I thank you for sharing. +Any taurine-takers care to validate their own experience vs the literature?",I’ve been taking taurine before and after long covid and never noticed any effects except for a decrease in bilirubin levels (have Gilbert's syndrome) +irr-pilot-022,covidlonghaulers,2026-03-13,comment,,"[Parent post: Mystery virus put me in a bad long Covid fatigue flare up: help.] + +Hey guys about 15 days ago I came down with a mystery virus. I tested negative for everything. I had pretty bad bronchitis for about ten days. Finally the coughing is almost gone. I am still coughing up clear mucus. Most of my viral symptoms are gone, and now I am left with this extreme fatigue. I am so exhausted. I can barely do anything earlier today. I was taking a shower and I felt like I was gonna blackout how long until my baseline gets better. This shit is so stupid. I hate it for reference. I have a mild baseline right now. I feel like I’m in hell with the capital H.",I got a “mystery virus” a month ago. Took me out! Couldn’t breathe. 7 days of prednisone helped. Low grade fever the first week. But I’m still phlegmy - blowing and coughing. I had one good day and then crashed hard. I’m sleeping 10-12 hours and pretty much couch bound. I also have weird intestinal issues that are different from my LC issues. +irr-pilot-023,covidlonghaulers,2026-03-27,comment,,"[Parent post: Has anyone been able to fully recover?] + +Hi all, + +I got long COVID over 2.5 years ago. Just wondering if anyone has been able to fully recover? I feel like when I meet people with long COVID, they have good and bad times and their symptoms kick in again whenever they get sick. Has anyone in this sub or anyone you know been able to fully recover?",I’ve had long covid for almost 4 years and I also now have dysautonomia/POTS/ME/CFS. I’m only getting worse. I wish it was better. It’s truly destroying me. +irr-pilot-024,covidlonghaulers,2026-03-24,comment,,"[Parent post: 3.5 years with this, recovered to the point where I can live a normal life IF I don't work] + +Currently I can work around 3hrs a day on the computer. Any more than that and I'll feel like shit. If I work 3hrs and go for a walk I'll feel like shit. It's like a cap. + +But, if I don't work in a week, I seem to be recovered. It seems like cognitive load is the biggest sap of energy for me. + +Anyone else in a similar situation? + +--- + +[Upstream reply] +Yes! I’m a therapist. I see 2-3 clients a day. It’s all I can do. I’m bed bound except for about an hour a day. We need the income so this is what I must do. I feel ya friend!","I have been dealing with long COVID/POTS for the last 3 and a half years and it has been constant ups and downs. I'm on my way to start working towards my bachelor's and hoping I have the energy to do so, and I was thinking of entering the therapy profession. Anything too physically or sometimes mentally demanding is very difficult for me. :(" +irr-pilot-025,covidlonghaulers,2026-04-02,comment,,"[Parent post: What helped your recovery?] + +How long did it take to notice an improvement in your symptoms? What actually helped you?","NAC, treating chronic EBV with lysine; taking l tyrosine in the morning for low dopamine and getting a motivation boost; also taking fluvoxamine for panic attacks, made them go away in a few weeks like a miracle!" +irr-pilot-026,covidlonghaulers,2026-03-13,comment,,"[Upstream reply] +I’ve had a fecal transplant! +Post-covid I was dealing with a ton of recurrent gut issues, including but not limited to indigestion, pain, and diarrhea. I developed acute diverticulitis, which they basically told me was unrelated to my other issues (lol) but after months of fighting various issues I finally got diagnosed with c. diff. + +I just want to mention that any time I went on antibiotics, I felt better. My overall LC symptoms, including neuro, all got better on antibiotics. Then I would come off of them and the symptoms would get worse again. Nobody ever really could explain why and everyone chalked it up to placebo. But I felt better than I had in years while on antibiotics. Every time. With 4 different types. + +After multiple rounds of this, a colonoscopy that showed I actually had practically no diverticula and no colitis, and recurrent attempts to treat the c diff, I was approved for Vowst FMT. + +What the FMT did do: got rid of my c diff, helped my IBS-D symptoms, allowed me to *eat more foods without issue,* possibly helped my malabsorption, improved my baseline and energy a little; I also gained an inexplicable 20lbs I did not need or want post FMT + +What the FMT did not do: cure me, eliminate all digestive problems, or have much of an affect on my neurocognitive issues. + + +FMT improved my quality of life because I was dealing with cyclical dysbiosis, inflammation, and eventually c diff colonization. I have had almost zero lower GI issues since my FMT just over a year ago, which is nice. But I still suffer from the ME/CFS type symptoms. + +--- + +[Upstream reply] +There’s a biological explanation as to why people feel better on antibiotics. If they can’t explain it to you, then they don’t understand the pharmacokinetics/dynamics of the medicine they’re prescribing which is not unusual. + +The placebo reasoning is an oversimplification of someone not understanding biology, there are so many aggressive processes at play. +The reason is that the antibiotics are doing exactly what they’re intended to be doing. Killing bacteria that’s causing issues. You would feel worse after because antibiotics are typically broad spectrum, so they also kill beneficial bacteria. Once you’re off of them, you don’t have enough of your own beneficial bacteria to fight off any pathogen to proliferate. There are also other bugs left behind, that become antibiotics resistant which cause superbugs + +You getting fmt was enough to stop the obvious gut symptoms that were bothering you. It doesn’t necessarily mean it fixed dysbiosis. Some people do multiple rounds because of that issue. If fungal overgrowths are present, it can still persist as well. Dysbiosis is a spectrum and may or may not cause gut symptoms but can leave someone with gastritis/inflammation that perpetuates chronic fatigue. You can get an endoscopy if you’re able to do it to see if you have gastritis or other infections.","I understand that antibiotics killing off bacteria has effects, but I meant more that antibiotics also have other effects that seem to be “unrelated” to that application. I’m talking anti-inflammatory or immunomodulatory effects. + +My primary long COVID symptoms are ME/CFS type, without obvious MCAS or SIBO or the like. My primary symptoms were never GI, and while I know about dysbiosis and the gut brain axis and all of that (thanks to issues I had LONG before COVID lol) treating gut through drugs and nutrition didn’t change my PENE/PEM. Which is why I mention that nuking my gut and starting over helped my baseline a little and allowed me to eat a much wider range of foods, it didn’t meaningfully “fix” me and my symptoms fluctuate way more in relation to other factors." +irr-pilot-027,covidlonghaulers,2026-03-22,post,Peptides,,Has anyone successfully improved their condition by taking peptides? Which ones would be most helpful for each subset of long covid? +irr-pilot-028,covidlonghaulers,2026-04-05,comment,,"[Parent post: I most likely have long covid with only one month before my semester ends. What do I do?] + +Im honestly making this post because I'm desperate. I still have debilitating brain fog and fatique from having covid 1 1/2 months ago, and I fear there is a chance I have long covid. I've met with a doctor and was told to be kind to myself and in the nicest way possible- that I have to ride it out. I have no idea how to do this as a college student taking senior level courses. The brain fog is preventing me from doing any homework or concentrating in class. All I want to do is sleep. Not to mention just before I got covid I was three weeks in processing a bad break up with my partner of 7 years. Im terrified I have to withdraw even though I only have a month left. My professors are unwilling to give me much accommodation for an incomplete. I don't want to give up but at the same I can't help but feel as if it would take a lot of weight off my shoulders. Should I try to push through or would this worsen my condition? Has anyone else gone through this during school? What did you do?","I would suggest not powering through it because it will get worse. When you feel overwhelmed, allow yourself a break. A break from screens especially. Then reset and continue where you left off. Do things in small amounts. + +Also, from going to dozens of doctors for this since 2021 one thing I’ve learned that helps with brain fog is treating inflammation. Cutting out gluten for example. Working up to taking cold showers. Steering clear of anything that causes inflammation and doing things that can help treat inflammation. I hope this helps a little" +irr-pilot-029,covidlonghaulers,2026-03-14,comment,,"[Parent post: Fecal Transplant] + +Given that many of us have gut dysbiosis. + +Has anyone tried fecal transplant? + +--- + +[Upstream reply] +I’ve had a fecal transplant! +Post-covid I was dealing with a ton of recurrent gut issues, including but not limited to indigestion, pain, and diarrhea. I developed acute diverticulitis, which they basically told me was unrelated to my other issues (lol) but after months of fighting various issues I finally got diagnosed with c. diff. + +I just want to mention that any time I went on antibiotics, I felt better. My overall LC symptoms, including neuro, all got better on antibiotics. Then I would come off of them and the symptoms would get worse again. Nobody ever really could explain why and everyone chalked it up to placebo. But I felt better than I had in years while on antibiotics. Every time. With 4 different types. + +After multiple rounds of this, a colonoscopy that showed I actually had practically no diverticula and no colitis, and recurrent attempts to treat the c diff, I was approved for Vowst FMT. + +What the FMT did do: got rid of my c diff, helped my IBS-D symptoms, allowed me to *eat more foods without issue,* possibly helped my malabsorption, improved my baseline and energy a little; I also gained an inexplicable 20lbs I did not need or want post FMT + +What the FMT did not do: cure me, eliminate all digestive problems, or have much of an affect on my neurocognitive issues. + + +FMT improved my quality of life because I was dealing with cyclical dysbiosis, inflammation, and eventually c diff colonization. I have had almost zero lower GI issues since my FMT just over a year ago, which is nice. But I still suffer from the ME/CFS type symptoms.","you have to keep doing FMT and if it doesn't work, you have to address the small intestine. You also might have fungal overgrowth which will prevent FMT from working as it should. New donor could also help. or not." +irr-pilot-030,covidlonghaulers,2026-04-09,comment,,"[Parent post: Can you guys build muscles] + +I seem to not be able to progress in building muscles. My muscles quickly twitch and become tired when lifting and I can’t seem to be able to move beyond that. + +Any tips? + +Also my doctor doesn’t believe me and she thinks I just need to rest it well but I have tried everything from longer breaks to lower mass and higher consistency but nothing helps actually.","Ive been able to do high weight low reps, 1 or 2 sets to maintain some muscle. I will only do one exercise and wait a few days to do anything else. I lost about 10-15 lbs of muscle though since getting sick." +irr-pilot-031,covidlonghaulers,2026-03-20,comment,,"[Upstream reply] +Because the harms are well documented. + +I assume you are another mind-body proponent or another account owned by the same guy who runs all the mind body subs. + +Whether you are or not doesn’t matter though - if you aren’t aware of the huge historical harms caused by these scams then I suggest you do some research. If you are then why are you pretending it’s harmless. + +Either way, I’m policing these comments in the sense that i’m protecting the less knowledgeable from harm. + +--- + +[Upstream reply] +I'm not a bot and I have no skin in the game other than trying to recover and get my life back. I've taken countless meds and supplements for 4 years now, have seen endless doctors who don't know what to do or say and have, both on this sub and in life, had many people explain that they have the answer and that they have LC figured out. I've taken anticoagulants, anti-parasite drugs, have been advised to take immune suppressants, all based on theories. And these recommendations have been from so-called long COVID doctors. Those all have inherent risk of harm and did not really move the needle for me. + +I am not telling you nobody has been harmed by mind-body stuff. I can't know that and don't believe that. There are grifters and shady people in every circle. But, if people are saying they had long COVID and now they're better, I don't think silencing them is the right move. I'm all for anyone, like you, voicing opposition or advising others to have caution. But to say we ought to have a nanny state and ""protect everyone from this harmful garbage"" is unfair and illogical. I would encourage a more honest and patient look in the proverbial mirror in this case.","No the issue isn’t necessarily grifters - although the vast majority are. + +It’s about how the causes of these conditions have been manipulated and twisted to the point where medicine doesn’t feel the need to research it. + +Honestly I’m not the one who has to explain their position here. The history of the harms are very well documented and freely available to you." +irr-pilot-032,covidlonghaulers,2026-03-12,comment,,"[Upstream reply] +Fascinating! Congratulations on regaining some of your sense of smell. What dose of LDN are you on? If your screen name is your real name, then this will be the first time that I’ve seen mention of a male being fobbed off by doctors as having “anxiety”, I had thought it was basically only women. It just goes to show they suck but at least they do it equally! Dark humor aside, I searched for IMU-838, I will have to keep an eye on the Australian clinical trials registry as it is currently not available here. As a biomedical scientist, what are your feelings on the GLP1 receptor agonists being used off-label for post viral syndrome? What do you think of hydroxychloroquine for long Covid too? + +--- + +[Upstream reply] +Unfortunately, I’m a relatively young-looking woman (36 yo), so obviously I’m perfectly healthy, just seeking attention, and dealing with anxiety — maybe bipolar too, but I guess that would require additional testing. /s + +I’m on 0.5 mg LDN right now and plan to stay on it for at least three weeks before increasing the dose. + +GLP-1 looks very promising, and I did try it for a while before enrolling in the clinical trial. In my case, the problem is that I’m already trying to maintain my weight because I’m close to being underweight, and I’m also prone to gastritis. Unfortunately, I don’t have any specific knowledge about hydroxychloroquine.","Gotcha! Damn. The stereotype wins again. I was hoping you were really a Bartosz, but it’s true, you have to stop being hot altogether, and get crinkly and humpbacked before you can be taken seriously as a woman. Lol. +Thanks for answering regarding LDN, I’ve been holding at 4.5 mg for a long time based on previous advice, but I’m slowly ramping down, because I think for me it’s worsening paralysis and general hyperalgesia. Yeah, definitely no GLP1s for you. I wondered the same thing when I first saw Covid longhaulers talking about it, I imagined what if it was the only thing that worked, but then you have to make the choice of becoming a skeleton/dead, or sick again. Dark humor sure but a legitimate dilemma." +irr-pilot-033,covidlonghaulers,2026-03-17,comment,,"[Parent post: Forced Return to Office] + +I’m F%cked. 6 years I’ve been work from home because entire organization did it. Now corporate said everyone back in 3 days a week. I won’t last. + +\*How do I convince Doctor to continue working from home? I doubt she will give a note for all the time. + +I’m guessing I need to do FMLA every so often and if I get a note it will be not exception to work full time all the time remote/at home. + +I posted in the CFS board as well. Vent and advice. + +\*Anyone had that accommodation? This going to be a pain. I dislike trying to convince people how horrific the many symptoms can be at times.","I would frame this to my doctor as ""my supervisor is fine with this as an ADA accommodation, as I've done my job this way for 6 years, but per company policy, I need a doctor's note."" If she understands it's already acceptable per your job, I wonder if she'd be more automatically supportive?" +irr-pilot-034,covidlonghaulers,2026-03-13,comment,,"[Upstream reply] +Ivermectin every other day for a week cleared up the lingering cough and mucous when I got reinfected two months ago. Didn’t take away my long covid ailments but did help with the cough. + +--- + +[Upstream reply] +Oh man I’ve tried ivermectin in the past and it tanked my white blood cells it made me very sick.","Yikes. Not sure what dose you took but good to know. It wasn’t without side effects for me either, it did have a little bit of ‘swimmy head’ and I could feel it activate my neuropathy some so that’s why I recommended every other day (felt too strong to handle daily). I made sure to take it when I knew I could rest afterwards. + +Some people say they get benefits on ivm when taking it for longer periods of time but it honestly felt too strong for me. Now I only have full dose by weight pills. I recently got hold of low dose 3mg pills and may try those to see if it does anything for my long covid symptoms. I know when I took the full dose i didn’t feel any changes to my more severe issues, just helped with the active covid lingering cough and mucous." +irr-pilot-035,covidlonghaulers,2026-03-14,comment,,"[Parent post: PolyBio Research Foundation Funds Project to Develop Urine-Based Diagnostic for Long COVID - PolyBio Research Foundation] + +Medford, MA — PolyBio Research Foundation has received funding to support a project designed to develop a non-invasive diagnostic approach for detecting persistent SARS-CoV-2 molecules and inflammatory signatures in people with Long COVID. The study will focus on identifying viral proteins, viral RNA, and tissue injury markers within urinary extracellular vesicles – tiny particles released from cells that can carry biological signals from tissues throughout the body. + +The project will be led by Dr. Alessandra Luchini, Professor at George Mason University and a leading expert in proteomics and infectious disease diagnostics, together with Dr. Barbara Birkaya, a molecular biologist specializing in extracellular vesicle biology and urinary biomarker discovery. Their work builds on prior studies demonstrating that pathogen molecules from diseases such as tuberculosis, Lyme disease, and Chagas disease can be detected in urinary extracellular vesicles with high sensitivity. + +Persistent viral molecules, including SARS-CoV-2 spike protein and RNA, have been detected in patients months after acute infection and are believed to contribute to chronic inflammation and organ dysfunction. However, current diagnostic methods often struggle to detect these signals reliably. The new project will test whether urinary extracellular vesicles can serve as a sensitive and scalable source of biomarkers reflecting both viral persistence and tissue injury across multiple organ systems. + +The study will analyze urine samples from 50 Long COVID patients and 50 matched controls, using optimized laboratory workflows to enrich extracellular vesicles and detect viral spike protein and viral RNA. Researchers will also perform large-scale proteomic analysis and targeted immunoassays to measure markers of tissue injury and immune activation originating from organs such as the lung, heart, liver, gut, and nervous system. + +By combining advanced extracellular vesicle enrichment methods, mass spectrometry–based proteomics, immunoassays, and RT-qPCR viral detection, the research team aims to create an optimized diagnostic pipeline capable of capturing signals of persistent infection and systemic inflammation in Long COVID. + +“If successful, the approach could provide a simple, non-invasive test for detecting viral persistence and monitoring disease biology in Long COVID” says Dr. Amy Proal, President of PolyBio. “This could help researchers better stratify patients for clinical trials and guide the development of targeted therapies.” + +--- + +[Upstream reply] +What bothers me a little about this study is that its basis is unclear. + +This is because the role of viral persistence is completely unclear yet. Both people with LC and healthy individuals have viral fragments. It may be that viral persistence plays a role in LC, but we do not yet know what that role is, under which conditions and to what extent. + +This is particularly because the viral fragments that, according to the theory, cause problems are supposed to be found in tissue reservoirs. If this is the case, I would assume that this would not be detectable in a urine-based test. + +I am somewhat concerned that, on the one hand, the results may not be meaningful, or, on the other hand, they may lead to false conclusions regarding viral persistence. In the former case, one can at least say that we now have a study that provides some insight. In the latter case, the study could even add more confusion to this theory than already exists.","there is no basis as of yet for my theory, but i believe it is not the persistence of whole virus, but the persistence specifically of the spike protein in immune-privileged tissue that cannot be cleared and causes perpetual inflammation + +it is one of the only physical factors i can think of that conjoins longhaulers that are from actual covid infection, and longhaulers from vaccination, they were not both exposed to whole virus, but they were both exposed to spike protein and its replication process" +irr-pilot-036,covidlonghaulers,2026-03-17,comment,,"[Upstream reply] +I believe it fed a bacteria called bilophilia wadsworthia + +--- + +[Upstream reply] +Dis it corelate with symtpoms though ?","I stopped, adressed this bactéria over growth and it got better. Symptoms returned when i tried taurine again" +irr-pilot-037,covidlonghaulers,2026-03-12,comment,,"[Upstream reply] +Yeah I’m in Australia. Have you tried Clinic Nineteen? They do have a few months long wait. + +Do you think you have mecfs from LC? If you post in r/cfs there are other Aussies in there who may be able to give you clinic details near you. Or search in there, I’m sure I’ve seen doctors listed. + +--- + +[Upstream reply] +Hi! Yes I have, last year I worked with Josh. They were the only clinic willing to do telehealth, as I’m completely bedbound. We spent most of a year adjusting the dose of LDN up and down the scale repeatedly to no avail. I felt in some ways it was making me worse; more fatigued. I asked if there were any other modalities we could try, he said the only thing he can recommend if LDN isn’t improving things is a procedure called a “stellate ganglion block”, which I was nervous to do because of the risks if the injection isn’t performed right. In the end, the clinic that performs it rejected me based on my referral info, because they didn’t think it would address my symptoms, that it is still very theoretical and that they’re not using it for long covid. That said, apparently it’s done left right in center for long covid and dysautonomia in Sydney and Melbourne just not in parochial Newcastle. Unofficially yes I think I have ME/CFS. I will check those subs out, thank you. I have just gotta find clinics that will accept to speak by Telehealth (as some are not happy doing that).","FWIW/ n=1 Physics Girl, a science based YouTuber w/millions of followers, just recently did her first vid in years after being completely disabled, bedbound, non verbal, etc from long covid; I believe the stellate ganglion block is the treatment that helped her symptoms relent most recently. + +I saw the news in a ME/CFS or long hauler subreddit." +irr-pilot-038,covidlonghaulers,2026-04-08,comment,,"[Parent post: How do you refrain to ""test yourself"" ?] + +i M48 am trying very hard to pace for the last year but i always fail, end up in a crash, on a lower threshold till becoming severe now, i crash on legs muscle only (walk, stand too long,,ecercice). + +now bed resting after a last crash by 900 steps, i walk close 0. + +I feel horrible in pacing, i always made some mistakes , trying to expend too fast or testing some Movements (calve raise killed me, squats, stairs). Am i the only one finding that horribly difficult to over control ? one 5 secondes mistake can ruin monthes of pacing.","I was guilty of this for the longest time. I kept trying small exercises & it would put me in a crash every time. I guess what happened is I got sick of feeling so bad & came to accept that I just couldn't exercise at all. I started telling myself that I'd get back to it when I'm better. I'm in year 4 now & I finally feel like I'm improving enough to start doing stuff again. It takes time & an endless amount of rest 😔🙏🏻🫂 +Ativan helped me through crashes" +irr-pilot-039,covidlonghaulers,2026-03-12,comment,,"[Parent post: Experiences with Taurine?] + +https://pubmed.ncbi.nlm.nih.gov/41803812/",I do 1g Taurine every night to help with sleep. Not revolutionary but it helps a bit. Outside of that nothing +irr-pilot-040,covidlonghaulers,2026-03-12,comment,,"[Upstream reply] +This is significant and I thank you for sharing. +Any taurine-takers care to validate their own experience vs the literature? + +--- + +[Upstream reply] +I’ve got neuro-style Long Covid for years with brain fog and PEM. I’ve been taking this type of dose of Taurine for some time. I think it helps a bit, but I can’t speak to any large effects. The effects are smaller than the daily variation in my symptoms. But that is my experience with all supplements generally. + +One thing I can say specifically it can reduce jitters from coffee.","Taurine definitely helps with caffeine jitters, and that’s why they put it in Red Bull, and also why people associate Red Bull with feeling good and not merely awake, it’s no caffeine pill nor gas station coffee" +irr-pilot-041,covidlonghaulers,2026-03-12,comment,,"[Parent post: BP meds: For those sensitive to medication.] + +Everyone’s reaction will vary. I just want to add that I took one single (small) 10mg dose of Olmesartan and it made me very drowsy for an entire day and more. With that drowsiness was a feeling of even slower cognitive function. + +LC raised my already borderline blood pressure and since I can’t exercise, I see no other way. I hope to find one that doesn’t affect me badly. I’m underweight already and salt isn’t my issue either. + +I will say my gut is screwed up from antibiotic use, so I’m sure that exasperating things as well.","Some of the meds and supplements I took came with very noticeable side effects initially, but within a few days went down to a point where I could stop them, start again without those side effects again. + +I need to make sure with lactose containing tablets to be careful unless they're in a suspension like with the 10 mg hydroxyzine supplements because I seem to be lactose intolerant and react in some way to all meds with lactose." +irr-pilot-042,covidlonghaulers,2026-03-12,comment,,"[Parent post: Long Haul Fasting with Long Haul Covid] + +I had an interesting experience with fasting recently. I often do intermittent fasting with no issue, but decided to do a 24 hour fast a few days ago just to see how it felt. + +I stopped eating at 7 pm and planned to eat the next day at 7 pm. + + +I felt very good until the evening. Because one of my clocks was wrong by an hour (???), which I discovered later that evening, I accidentally fasted for 25 hours. + +I am glad this happened, because something odd happened. At about 24 hours into the fast, I swear almost to the minute, my legs starting having weird vibration feelings. This always happens when I over-exert myself. This is my major sign of PEM. + + + +Later I learned that autophagy kicks in at 24 hours. + + +Anyway, I don't know if this is a good or bad thing. I am hesitant to try again, but at the same time, intrigued by the power of autophagy.","I am currently on Day 5 of my 6 Day Fast. + +I drink coffee and green tea (both with a splash heavy cream), and water. + +Initially my GP followed me with labs, it was his last resort for my insulin resistance… and it worked! I no longer have Type 2, and am off insulin injections! (It took about four months) + +I have continued because it helps my MCAS, various bowel disorders, inflammation, autoimmune disorders and brain fog. + +I don’t have a set schedule, just whenever I can tell my body needs a break from food. The length of my fasts also depends on if I’m in an autoimmune flare. Make sure you don’t end up underweight, and remember to add salt to your water." +irr-pilot-043,covidlonghaulers,2026-04-02,comment,,"[Upstream reply] +Oh yes I did. For more than a year. + +This went away after plasmapheresis treatment. +It hasn‘t come back yet. +The only thing it truly helped with. + +No idea why, or what the mechanism behind that was. + +--- + +[Upstream reply] +That’s my most miserable symptom. However, I am also getting PRP and I am addressing my neck because my neck is also causing issues…. Like after I got Covid, but my neck got so bad….cranial cervical instability so I know by addressing it it’ll get me out of this brace and I will start feeling better + +So my symptoms are light sensitivity, shortness of breath, and air, hunger, some temperature intolerance, brain fog, dizziness, fatigue, orthostatic intolerance sometimes, dysautonomia like stuff basically + +Did you have any of those symptoms as well? + +Also, congrats on crawling out of this hell","any chance you have hyper acusis too? +it is very interesting you bring up the neck + +I have always observed a correlation between neck stiffness / instability and some of the weirdest symptoms. + +I did buy an iron neck and started training, which has helped. + +I had brain fog, fatigue, hyper acusis, air hunger, dizziness and felt spinny + +my neck also cracked from nearly all movements and rotation was impaired in the weirdest way possible" +irr-pilot-044,covidlonghaulers,2026-03-25,comment,,"[Parent post: What meditation method actually helped your nervous system?] + +I’ve noticed a quite a few people here mention meditation as part of their recovery from an overreactive nervous system — and I’m genuinely curious about what’s actually worked. + +What type of meditation has helped you the most? Breathwork, body scans, mindfulness, something else? And did it take a while before you noticed a difference, or was it relatively quick? + +Would love to hear what’s worked (and what hasn’t) — appreciate any input.","For me breathwork and somatic tracking meditations helped the most. But even more than practices, what helped me was the knowledge. Understanding how the nervous system works, why it can create symptoms, learning to recognize the different states (fight, flight, shutdown, etc). Knowledge and changing my beliefs helped much more than practices alone." +irr-pilot-045,covidlonghaulers,2026-03-16,comment,,"[Upstream reply] +Research ""nicotine patch therapy"". 3 days of 7mg worn 24/7 restored my sense of smell which had been completely gone for 3 years. Have seen others say they had similar results. Doesn't work for everyone though. + +--- + +[Upstream reply] +I haard about something that has to do with nicotine but didn't care because it's not mentioned a lot and not many have tried them, but will consider it for sure after my olfactory training, i like how there's so many things to try now and a lot of them like this nicotine and the stellate ganglion block have no explanation on why they work on some people. +So for how long now your smell is back after the nicotine? And does it have any side effect?",i tried the nicotine patches and had issues with sleep after. took me a while to get back ti regular with sleep. no improvement in sense of smell or taste +irr-pilot-046,covidlonghaulers,2026-04-09,comment,,"[Upstream reply] +I didn’t even know LC was a thing! February 2023 I had my third infection and it just went downhill from there. Woke up extremely foggy one day, felt off-balance, heart pounding, head felt like a balloon, I felt outside of my body, couldn’t sleep, anxious AF, food reactions, couldn’t hold my eyes open after sleeping a full night, full body rashes, headache, dry eyes, etc. I literally thought I was dying. Went to multiple doctors and couldn’t get any real answers. This sub is what saved my life! Thanks to others going through the same experiences and trying what others had tried I finally found some relief! I’m now under the impression I developed MCAS which was causing the majority of my symptoms. I’m about 90 percent managed these days and feel (almost) normal. + +--- + +[Upstream reply] +What did help","A shit ton of high quality methylated vitamins (high potency one a day by life extension), Allegra and Pepcid once a day (both help with MCAS) and an SSRI to calm down my nervous sytem which was shot to hell! Lexparo in my case." +irr-pilot-047,covidlonghaulers,2026-03-13,comment,,"[Parent post: Are we developing muscle atrophy?] + +COVID since 2022 and getting less and less capable, less steps every year, but also coxxyg pain and leg pain increasing. If I walk a rad bit more or do more steps for stepping in bus, only that, I get stronger and longer coxxyg pain as of 2026. And my legs ache and feel empty and tired to keep me upright so I have to sit down. Does anyone feel the same? A friend of mine has muscle edema, atrophy, infiltration of water and fat in the muscles. Could we all be developing a slow muscle decline due to the ongoing inflammation/ neuroinflamation?",This does not resonate for me as after going gluten free and low amine diet for MCAS I can and am gaining weight in using seated exercises at the gym without hitting pem threshold as long as I pace etc throughout my day. But any cardio beyond the smallest walk and it's pem for a week +irr-pilot-048,covidlonghaulers,2026-03-29,comment,,"[Upstream reply] +Happy to try less expensive if it is recommended by folks here or Long COVID doctors who seem to actually know about our conditions. Thank you. + +--- + +[Upstream reply] +Definitely 100% not. + +There is not a single legitimate supplement manufacturer that's going to risk producing a patent protected compound and illegally distributing it.","I don't understand how it can be patented there's hundreds of options/brands on Amazon for urolithin A. I guess it's up to the company that patented it to enforce their patent. It's probably too difficult and expensive for them to enforce. + +For what it's worth, I tried some for a bit, but it had no effect from what I could see. Maybe I got fake stuff. Who knows." +irr-pilot-049,covidlonghaulers,2026-03-12,comment,,"[Upstream reply] +I’m curious what they did to diagnose your MS and if you’re on any medication. I’ve had severe long covid since 2021 and been experiencing strange spinal and neurological symptoms the past year, that are new to me. I’m getting multiple MRIs this month but also curious what else you were feeling and how doctors eventually diagnosed you. Only if you’re open to sharing ❤️ + +--- + +[Upstream reply] +Hi there! They diagnosed it by way of multiple MRIs, spinal tap and visually evoked potentials. I refused any of the DMT‘s, for complex reasons, in large part because my mom was still alive at the time, and spookily enough – she too had gotten MS at 18, at a time when MRIs and these drugs didn’t exist. She went her whole life without DMT‘s and felt very strongly that they would do more harm than good for me, and so I too refused. My reasoning was largely based on the fact that I was more or less OK for the six or so months until I got long Covid. I only ever took a mix of opioid and non-opioid painkillers to manage my MS symptoms, such as Lyrica, to manage at work, which I stopped when long covid started. I’m sorry to hear about the severe long Covid and how long it’s been :( I am glad you’re getting those MRIs and neurological work up because that does sound a bit “MSey”, but I also wouldn’t put it past the post viral chaos of long Covid either. What led to me getting the investigations for MS was I was at the end of school, and starting to have a weird gait, extremely bad temperature management, tingling in paralysis in my dominant hand the more that I used it. I was just pushing so hard to graduate, I was just dealing with weird symptoms like not being able to feel the bottoms of my feet or my crotch. One day I woke up with the most unholy migraine and no vision in my right eye, so that was when it was finally not something I could keep putting off investigating. I hope this helps, and I hope you get some clarity from your scans!","Thank you for your thoughtful reply. I have very bad sensitivity to the heat, as well as this strange sensation in the bottoms of my feet that coincides with these very uncomfortable electrical feeling surges in my spine. The temperature sensitivity has been happening since my long covid started but the other things have been happening within the last several months. Last year I also had a couple months where I had multiple migraines, and until then I’d never experienced one, How often now do you get migraines? And can you tell the difference between your symptoms from long covid and your symptoms from MS? Are any of them specific enough to distinguish?" +irr-pilot-050,covidlonghaulers,2026-03-12,comment,,"[Parent post: Dream Team Peptide Stack for LC] + +Disclaimer: Not medical advice, just my personal experience for the past few weeks. + +Hola, my LC family. Thank you all for keeping me sane these past few years. This illness can be incredibly isolating and I am glad to have access to this community in what has undoubtedly been the most trying time of my life. + +Just wanted to drop in and share what’s been working for me for the past few weeks. + +From left to right: **Tirzepatide, Thymosin Alpha 1, TB-500, KPV, MOTS-C, SS-31, NAD+, GHK-Cu, BPC-157, and Epithalon.** + +Tirzepatide has definitely been a game changer. I think it has improved my mitochondrial function and lowered inflammation which is allowing everything else in my protocol to work better. + +If there is enough interest here, I can elaborate further on what my rationale has been for using these peptides, and the specific protocol I am following. I will also be posting about all the supplements, medications, and other treatments I have tried. + +My condition has improved so drastically that I have been going on 90 minute bike rides without crashing. In fact, I went on two such rides in a 12-hour window today. Brain fog has mostly elevated, and I feel hopeful for the future again. + +At one point, I was bedridden for a couple of months so it feels like I am coming back from the dead. + +Anyway, hope this information helps somebody here. Don’t hesitate to DM if you have questions. + +Wishing everyone peace and great health. Hang in there! 💪",So glad you’re improving. SS31 has been great for my brain fog and KPV for my mast cells. Unfortunately I can’t tolerate GLP1s even in tiny doses. What else has been the most potent do you think? +irr-pilot-051,covidlonghaulers,2026-04-10,comment,,"[Parent post: Anyone with experience cycling SS 31, MOTS C and TA1] + +Anyone here have experience with SS-31, MOTS-c, and Thymosin Alpha-1? + +I’m trying to figure out how to structure this in a careful way. Right now I’m mostly interested in SS-31 and MOTS-c since they seem like they might be the most relevant for me, and then maybe adding Thymosin Alpha-1 after. But I’m open to doing it in a different order if that makes more sense. + +I’ve also read a few times that some people do SS-31 first for a while and then add MOTS-c, because they may work better that way, but I don’t know how solid that actually is. + +My main symptoms are head pressure/headaches, neck and jaw stiffness/pain, throat pain, ear pressure/tinnitus, PEM/crashes, and POTS. Because of the POTS, I’m also a bit hesitant about trying NAD. + +I’m trying to be cautious and not change too much at once, so I’d really appreciate advice on things like: + +how long to run each one, + +whether to cycle them or not, + +and how to figure out dosing. + +Also, if anyone has good resources or anything more evidence-based that helped them build a protocol, I’d really appreciate that too. + +Any advice is appreciated. + +--- + +[Upstream reply] +SS31 and MOTC are very different peptides than TA1…. If you are going to give them a shot, I would do atleast a month with SS31 40mg daily and MOTC 5mg daily. The TA1 will help your T cells calm down and convert back into a regulatory state - I would run that on its own after you try the mitochondrial peptides, or go with it first. Do 1.6mg daily and give it atleast 3-6 months.. your t cells will take time to shift and have a real impact","Thanks for the comment +The SS 31 dose seems huge! I know they have clinically used such huge doses, but in practice aren’t doses like 2 to 3 mg? Also doing 40 mg of SS 31 daily for at least a month would be impossible financially for me to be honest." +irr-pilot-052,covidlonghaulers,2026-04-03,comment,,"[Upstream reply] +What dose were you on?  + + +I also do not react to food/ smells, but am diagnosed. I don't really have any ""allergy"" type symptoms at all, except flushing. My main symptoms were just feeling like I got hit by a bus and POTS. I had to get up to 3 pills/day to feel a big difference, and also had to take the right ones. I don't do well on Fexofenidine, for example, but great on cetirizine. I can't handle Ketotifen, but do well on vitamin C/vitamin D. So just a thought! Some people also have to get their antihistamines compounded due to fillers. I don't know how much or what type of antihistamines you've tried, but do think it's a good thing to rule out 100% in case you're running out of ideas. + + +Some people with mast cell issues don't do well on antihistamines or Ketotifen but might do well on Cromolyn Sodium or Xolair. Some people need montelukast because their mast cells release more leukotriene than histamine. + + +Naproxen sodium also helped me a lot with flushing because it reduces prostaglandins, so if you try an NSAID for your flushing and it helps that could tell you it's a prostaglandin issue (which is also mast cell).  + + +LDN took about 9-10 months and trying up to 3 mg to really notice a difference, but it did make a pretty big difference in case you haven't tried that either. It's not specific to mast cells, but more of an immune system modulator.  + + +Anyway, just thought I'd throw this out there in case you're running out of ideas. Best wishes to you on this journey! + +--- + +[Upstream reply] +Thank you! I believe it was 1 mg ketotifen twice a day. And 40 mg famotidine 2x per day. No difference after almost a year on that combo. Zrytec I take PRN for allergy type stuff. No difference in main symptom cluster. I’ll look into Xolair I haven’t tried it. I tried chrmolyn sodium for 5 days and discontinued since it oddly made my chest pain worse. Thx again!","Just fyi 1 Zyrtec didn't help me much, 3 made a difference. Some people take up to 4/day (standard MCAS treatment). My doctor said take one in the morning and one at night for two weeks to see, if it helps increase it. If it doesn't help, wean off. + + +Pepcid also didn't help me any, unfortunately. Ketotifen made my chest tight and itchy. + + +Good luck!" +irr-pilot-053,covidlonghaulers,2026-03-13,comment,,"[Parent post: You are so brave] + +I wanted to take a minute to tell everyone how brave I think they are. I see your posts about trying new medications and therapies and fighting every day/night. I wish I was as brave as some of you guys, but my anxiety and medication specific trauma is so bad that I’m terrified to try new medications. I know I have to try, especially now, but the fear of horrific side effects is strong. You guys are truly warriors fighting for your life and that means something.","i’m currently only awake because i have a phone call with my favourite doctor soon, going to try for a neurology referral as well as literally any support they can offer i’m kind of floundering out here. + +the fear is understandable though, i’ve had bad side effects from medication, and i was dismissed, discriminated against (on basis of sexuality) & sexually harassed by my cardiologist- so that prospect is terrifying to me. + +i also don’t take my LDN as often as i should so i don’t even know if that’s working, it’s just hard to get out of bed to the fridge and take it regularly. my mum also has seizures every day so she’s not able to be my full time carer, we make do with the cards we’ve been dealt" +irr-pilot-054,covidlonghaulers,2026-03-12,comment,,"[Parent post: Any Europeans who did IVIG?] + +I am very curious if any Europeans did IVIG? most of the stories I hear are from people in the US or maybe Germany. but i have never heard stories from someone in my country (the Netherlands) receiving IVIG. as far as I am aware there are no doctors who would give such treatments. I feel like it is very rare in general.","I'm getting IvIG in Belgium for a post-COVID small fiber neuropathy. I'm 9 months into my treatment, with 14 infusions received in total so far. The last one ended earlier today. + +I'm following the protocol described in this paper: https://www.neurology.org/doi/pdfdirect/10.1212/NXI.0000000000200244 + +There's some evidence that I may be responding, but I will likely need the treatment to be extended beyond the funding granted but our health system." +irr-pilot-055,covidlonghaulers,2026-04-07,post,Moving to the US - long flight or cruise?,,"Hello all, I'm moving (back) to the US this summer and need to either take an 8.5 hour flight or a 14 day cruise to get back there. I've been on other shorter cruises before with no issue, I think I actually feel better at sea because my vestibular migraine/swaying sensation feels more ""real."" I'm also a very nervous flyer (panic disorder), and while I have a few Xanax pills, apparently you aren't supposed to take them with nortriptyline, which I'm on for the vestibular migraine. + +I've had long covid since June 2024, although with magnesium, montelukast, iron, B1, progesterone, vit D, cetirizine and electrolytes I've been feeling better except for the swaying/rocking/heavy legs and heat sensitivity/OH. Any thoughts or advice is appreciated." +irr-pilot-056,covidlonghaulers,2026-03-11,comment,,"[Parent post: Low Ferretin, Vitamin D and B1] + +Has anyone that's had low levels of ferretin, vitamin D or b1 seen improvements after increasing these? + +Ferretin = 12 + +Vitamin d = 28 + +B1 plasma = 6","Yes, I noticed a difference after recently getting an iron infusion.  +Vitamin d I didn’t notice anything after correcting it.  + +I also could tell after I fixed a Vitamin b12 deficiency so that is another one to look into." +irr-pilot-057,covidlonghaulers,2026-03-13,comment,,"[Parent post: Chronic inflammation (High CRP), autonomous nervous system issues and possible help from stellate ganglion block ? Searching for a provider in SF Bay] + +Hi fellow Long haulers. I have had long covid for 4 years now. I have gotten much better over the years and what is left is chronic inflammation (high sensitive CRP) and CF with PEM and some POTS (treated with Ivabradine). I am very blessed to be able to work full time, and my boss is understanding when I have a flare up. I am rarely bed bound anymore when I flare up. I live in the San Franisco Bay and I have had a good luck with doctors here. My PCP was generally very supportive of my ideas such as starting LDN (helped amazingly! )even though she has never heard of it but she left and I will see a new PCP next month, which brings a lot of anxiety. I am trying to get 100% better and I think my autonomous nervous system is out of whack (I have a PhD in biology so I understand how these things work) . I think the dysautonomia is the key (together with the inflammation). So my question is- is there anyone here from SF Bay who knows a provider who can prescribe a Stellate ganglion block or at least evaluate me? Also, do you have experience with it? Another question is what else I can try for the high CRP? My CRP is 8 when I flare up and around 4-5 when im outside of flare up, which is still high. I am on LDN, Montelukast, I take black seed oil and nothing seems to be able to take the CRP down. Thank you so much!","Yes! You need to get hsCRP under 1. Mine dropped to nearly 0. From my experience the ketogenic diet helped. I have to take 10g of potassium chloride, 10g of sodium chloride and 1.2-1.6g of magnesium blended with my food some days just because I move so much. But the reduction in oxidative stress after the adaptive period is insane. I've built up 12kg on it. The autonomic nervous system is absolutely wrecked by inflammation. + +When you get better, zone 2 cardio helped me get my nervous system better." +irr-pilot-058,covidlonghaulers,2026-03-11,comment,,"[Parent post: Sinus issues] + +Inflamed turbinates and small amounts of fluid in left sphenoid sinuses found on CT scans. I’ve already had a nasal swab to test for bacteria as well at mycotoxin for mold testing. No allergies as far as I know. + +Have tried sinus rinses, oral steroids, antihistamines, Nasalcrom, mast cell stabilizer, nasal steroids + +Nothing has helped does anyone have any ideas or similarities? I have mecfs subtype of long covid… have pem and always tired.","Covid has only complicated my sinus issues- +Sometimes the sinuses are clear and open and other times they seem supper stuffy.. +I’ve tried a whole bunch for relief and neti pots seem to do some justice- maybe Flonase every now and than- besides that nothing else has really helped as far as my sinus issues- + +The migraine issues are what’s a doozy for me… ibuprofen and sometimes aspirin really help with that-" +irr-pilot-059,covidlonghaulers,2026-03-13,comment,,"[Upstream reply] +I currently am fighting my SECOND round of MHPV. I am in northern California where it is running rampant right now. This round I am pretty sure i have bronchitis from it. + +Just prescribed +Clarithromycin every 12 hours 7 days +Prednisone + +Coughing up a tiny bit of blood but most likely from coughing so hard. Have a follow up Dr appt in morning and finally feeling a bit better this evening. + +This stuff is nasty af. All I can say is sanitize your house so you don't get it again. It is transmitted by surface touch. I have been sick since Jan 21 with a one week break and caught it again. This shit is a nightmare. + +Drink lots of fluids. Alka seltzer cold and flu I LIVE BY! Also Mucinex D is a life saver. + +I am currently on oxygen, have been since covid 3 years ago. + +Get a stool for the shower. Best thing my sister bought me ever. And a shower head with a cord. Even on days I am wiped out, I can atleast shower my body. + +Lysol disinfectant spray if you do not have the energy to clean. And wash all your bedding. + +Hope you feel better. + +--- + +[Upstream reply] +I tried Mucinex (red one), but didn’t seem to do much. Is Mucinex D (orange one) that much better? I mean, for LC.","Yes! Mucinex D. Only the max strength works for me. The regular didn't do shit for me either. + +Side note when I take it is makes my pee smell if I do not drink enough water. So make sure you stay hydrated. Lol Maybe this, but just something I found out." +irr-pilot-060,covidlonghaulers,2026-03-13,comment,,"[Parent post: Has increasing iron helped you?] + +Seeing my doctor in a few weeks, just got recent blood work back on iron, ferritin and saturation. They’re all within “normal” range, but I’ve read enough to know that can be deceptive. I’ve never really had blood results explained beyond “yeah they’re normal range and fine” + +But my new PCP knows I’ve been struggling with long covid along with other health issues (possibly connected to LC), so I was wondering about maybe asking for iron supplement, or I’ve read about doing iron infusions. Just not sure if it’s worth pursuing with her. + +For my blood work in June 2025 my ferritin was 38, RBC iron was 31, Hemoglobin was 15.6 an Hemotcrit was 47.6 (those last two show just slightly above normal level). My PCP at the time said that living at higher altitudes causes those to elevate and to just ignore them. + +This time (March 11th) I did a different test (not a CBC) and ferritin is 32, saturation 23%, total iron is 70. + +I have a different PCP now, and she’s pretty good at really listening to concerns and not just fobbing me off in that “stop doing your own research, I know best don’t question it way” that I’ve experienced with previous doctors. Even so, I have a lot of medical trauma and get very bad anxiety with doctors so speaking up and asking for things is very difficult. So just trying to gauge if it’s worth pursuing based on others experience. + +\*NOT SEEKING MEDICAL ADVICE, just experiences about if this avenue is worth pursuing with my doctor\* + +--- + +[Upstream reply] +No idea how helpful this will be but my iron levels were low after I was first diagnosed with LC–I can’t remember numbers for anything (this was at some point in 2021) but my iron itself was low enough that I was prescribed ferrous fumarate. I was on it for like 3 years and my iron levels did go back to “normal” but I saw no benefit from it. I had hoped it would help in some way but yeah…it ended up being another dead end for me.","Everything feels like a dead end. It’s both frustrating and disheartening. Did you have any other labs come back low? Like vitamin d or magnesium or zinc? I’ve read a lot of accounts that those may be connected. My zinc and magnesium are smack in the middle of the typical range but vitamin d is pretty low, I have started on supplements for that, but haven’t noticed a difference." +irr-pilot-061,covidlonghaulers,2026-03-26,comment,,"[Parent post: Validated] + +I got a free whoop life and from using it I got to learn I have very low HRV, nervous system imbalance, tachycardia, POTS, and signs of high stress when lying down. + +When I got long covid, I felt like I had aged 10 years. I remember telling my parents and partner this when going through the worst parts of recovery. + +Today I got my “age” based on my biomarkers. I’m 8 years older. So I feel validated that the way my body feels agrees with my biomarkers. The silver lining is that while this was a step change in my “age”, my rate of aging wasn’t cursed to 1.0x+ but rather at 0.7x. I’m also feeling better and have been able to start exercising lightly. + +I’m sure a lot of us felt that this disease had long term consequences and felt like we aged 5-15 years. And at least this is one data point that validates how we felt, it was not just us imagining it.","The title of your post says it all. When you look for validation, anything that validates you seems like the truth. Maybe next is the theory of microclots, so you do a RUO exam that shows it , then anticoagulation therapy is the promise that doesn’t ultimately work for your case. The search for validation is the search for truth , and it is what keeps people trying new treatments and theories. It is exhausting but no one will do it for you . You are on your own, you own your destiny, you own your truth ." +irr-pilot-062,covidlonghaulers,2026-03-20,comment,,"[Parent post: Nuclear Stress Test] + +If you’ve had a nuclear stress test (as opposed to an exercise stress test) and have M.E., what was your experience? + +My cardiologist for years has brought up a nuclear stress test but she has never pushed for it. It comes up at my visits with her because I have chest pain (pressure and strain) on mild exertion. + +I am categorically severe (on M.E. severity scales) and get this pressure/strain feeling in my heart from even cognitive exertion, but something physical like trying to make a meal can cause it. + +My M.E. was triggered by a Covid infection in 2021 that has left me primarily bed-bound since 2022, but am not sure that I am very stable and worry about when would be the best time to do this test is if at all. + +TL/DR: My big worry is that taking a nuclear stress test will lower my baseline. If you’ve had a nuclear stress test done, I’d greatly appreciate you sharing your experience with me, including your M.E. severity level when the test was performed or some info. about your capabilities at the time.","I got myself a nuclear stress test on December 31 2025, what a way to welcome the new year. + +I had a lowered baseline for about 2-3 weeks, the test was a bit insane in how breathless I began to feel. Heart rate came back down in a few minutes but felt pain for about 2 - 3 weeks." +irr-pilot-063,covidlonghaulers,2026-03-12,comment,,"[Parent post: Adrenaline rushes at night] + +Absolutely one of my worst symptoms, it's been happening for years now. I just thought it was PTSD and thought it was normal. It's finally starting to bite me in the ass. Was triggered in 2021? After a second covid infection and ptsd. Got unbearable in 2023 after I got a job and another infection and went through a manic episode for a few months. Every single night since then. Been an absolutely hellish amount of time to wait to fix this but I've been neglected for a while to convince myself I'm fine. I'm being tested for sleep apnea very soon, but it doesn't feel like sleep apnea, just dysautonomia spikes of some kind. I also developed insulin resistance last year, could it be that? I have signs of mcas, my doctor thinks I have it, but I don't have hives just like anything else regarding it lol. I've tried medications and they don't fix them. I wake up every single night multiple times and never feel rested whatsoever. There's more info I can add but I'm feeling foggy so if you have any more questions pls let me know. + +--- + +[Upstream reply] +Beta blocker and muscle relaxer. Solved my nightly adrenaline dumps!",I've been on both and different meds and unfortunately it didn't solve it. I'm glad it did for you though +irr-pilot-064,covidlonghaulers,2026-03-26,comment,,"[Parent post: What helps you reduce PEM] + +Hi friend in struggle. Been having hard time with PEM lately, even long walks trigger a lot of symptoms for me. I’m still working full time so I can’t always control pacing. + +If there if any sort of diet, otc, supplementation or medication that actually worked for you, I’d appreciate any recs. + +I’m on cymbalta 20mg, and gabapentin and bunch of basic supplements like curcumin, multivitamin and vitamin c and omega. None of these seem to make any difference.","I'm currently taking creatine, taurine. My meds: LDN, LDA, amifampridine. HBOT is helping me a lot with PEM and brain fog. (Not all LC patients respond to HBOT.) And I'm getting an oxygen concentrator for my brain fog." +irr-pilot-065,covidlonghaulers,2026-03-26,comment,,"[Parent post: Mostly bedbound from crushing physical fatigue for +2yrs but I don’t think I have PEM and don’t have other symptoms. Anyone recover from this one thing after it lasting so long? Today I just can’t take it 💔] + +Initially I thought I had PEM but now I don’t think I do, unless it’s literally just worse fatigue but even that is not always the case. + +On a VERY rare day that I have some energy, I don’t think it makes me worse to use it. I just have a very limited amount of it. + +I have tracked everything so meticulously for so long and cannot make head nor tail of why some days are better. + +I’ve done all the standard blood tests as well as a bunch of tests with functional MD too. Nothing stands out even to him. Some small things to be improved which I’m working on but nothing he thinks that would account for debilitating fatigue. + +I just feel so hopeless today. + +--- + +[Upstream reply] +Honestly, if you were bedbound… It could be low thyroid, low, B12, anemia, low growth, hormone, low cortisol","Hi! I think maybe we’ve crossed paths before on here! :) + +Yes all those things are tested except maybe growth hormone I’ll have to check that. All good except for recently Testosterone and Estrogen and DHEA did come back on the lower end of normal or low on a DUTCH test, so doctor is starting me on a low dose of DHEA I’m just waiting for it to arrive. So I’m hoping that will help but based on how he talked about it I didn’t come away with high expectations or hopes for it." +irr-pilot-066,covidlonghaulers,2026-03-12,comment,,"[Parent post: Has increasing iron helped you?] + +Seeing my doctor in a few weeks, just got recent blood work back on iron, ferritin and saturation. They’re all within “normal” range, but I’ve read enough to know that can be deceptive. I’ve never really had blood results explained beyond “yeah they’re normal range and fine” + +But my new PCP knows I’ve been struggling with long covid along with other health issues (possibly connected to LC), so I was wondering about maybe asking for iron supplement, or I’ve read about doing iron infusions. Just not sure if it’s worth pursuing with her. + +For my blood work in June 2025 my ferritin was 38, RBC iron was 31, Hemoglobin was 15.6 an Hemotcrit was 47.6 (those last two show just slightly above normal level). My PCP at the time said that living at higher altitudes causes those to elevate and to just ignore them. + +This time (March 11th) I did a different test (not a CBC) and ferritin is 32, saturation 23%, total iron is 70. + +I have a different PCP now, and she’s pretty good at really listening to concerns and not just fobbing me off in that “stop doing your own research, I know best don’t question it way” that I’ve experienced with previous doctors. Even so, I have a lot of medical trauma and get very bad anxiety with doctors so speaking up and asking for things is very difficult. So just trying to gauge if it’s worth pursuing based on others experience. + +\*NOT SEEKING MEDICAL ADVICE, just experiences about if this avenue is worth pursuing with my doctor\*","I had similar things. My ferritin and transferrin were slightly altered, but nothing too out of the ordinary. My iron levels were very normal too, which my PCP said didn't align with anemia, so the results were probably coming from low-grade inflammation. As many other people, my symptoms are very circulation related, so I did insist on me not getting enough iron or something like that. I supplemented iron and nothing changed. I tried leafy greens with lots of iron, meats. Nothing changed too. But of course my symptoms cluster might be different than yours." +irr-pilot-067,covidlonghaulers,2026-03-24,comment,,"[Parent post: I think dental work erased all my progress] + +Has this ever happened to anyone? + +I have been struggling with two things: long COVID as well as Lyme disease and babesia. + +My main (and most disturbing) symptom was all-over internal tremors/vibrations. I never felt a still body. It was always awful at night- it would feel like someone was shaking my bed as I was trying to sleep. These tremors started November 2022 and were brutal. + +Around December 2025/January 2026, a miracle happened and they lessened to the point that I actually barely had them. + +I was able to be in bed and on the couch and felt completely still. I don't know what happened or why, but I felt like I had turned a corner. To say I was happy is an understatement. The vibrations had made me severely depressed for years, so for them to finally leave felt incredible. + +Fast forward to this past Friday. I had to have an emergency tooth extraction on a tooth that had a root canal done years ago. Because of this, I was put on amoxicillin for the infection. + +I'm not sure what happened- was it the extraction itself? The amoxicillin I have to take (for ten days)? The novocaine? - but my body vibrations are back and strong as ever. + +I feel so depressed and helpless. + +Has this ever happened to anyone else? I am terrified they'll be here for another four years again.","2 upper molar extractions made me bed/house bound for 2-3 months. Symptoms started 5-6 days after procedure + +I don't have vibrations, i have body sickness/flu-type feeling with PEM" +irr-pilot-068,covidlonghaulers,2026-03-19,comment,,"[Parent post: What would you do?] + +If I complain all the time about then pain and fategue my partner becomes miserable. + +I stopped complaining all thr time and asking for help and now they assume I must be feeling better.","I'm sorry to hear that, and I hope you feel better soon! How about some physical sign? Like if you have a heating pad or use a specific blanket or are laying a particular war, your partner can know just by looking at you that you're in distress. You can mark it as such and say I'm gonna only use this thing when I feel x, or just this thing really helps me when im experiencing y. No complaining, but still communicates understanding!" +irr-pilot-069,covidlonghaulers,2026-03-17,comment,,"[Parent post: Combining L-Arginine with vitamin C improves long-COVID symptoms: The LINCOLN Survey] + +Anyone tried L arginine + vitamin c to help with symptoms? If so, what positive and negatives did you experience? + +Here’s the link to the study: + +https://pmc.ncbi.nlm.nih.gov/articles/PMC9295384/","I take an endothelial health stack that includes pycogenol/pine bark extract and I think it helps. + +I had an issue with low cortisol and low blood pressure that precluded me taking vasodilators. + +When my low cortisol and low blood pressure resolved, I tried 3 grams of citrulline with my morning stack and the improved circulation was a net positive. + +Citrulline synergizes well with citrulline and citrulline is converted into arginine in the body. + +As long as it doesn't cause low blood pressure and dizziness for you, it should be a positive." +irr-pilot-070,covidlonghaulers,2026-03-13,post,Ear popping / swollen sinuses,,"Anyone have weird ear popping in the second half of the day (mainly when swallowing a drink)? I've noticed it a lot lately. I also feel like both my sinuses (under my eyes) feel like a minor bump, but yet no sinus pain. I had a cold (not Covid) about 6 weeks ago but got over it. Just strange to still have what feels like head congestion, but only at random times. I'm taking zyrtec and famotidine, as well as cromolyn nasal spray, and also doing daily nasal rinses. Nothing seems to help." +irr-pilot-071,covidlonghaulers,2026-03-12,comment,,"[Parent post: Dream Team Peptide Stack for LC] + +Disclaimer: Not medical advice, just my personal experience for the past few weeks. + +Hola, my LC family. Thank you all for keeping me sane these past few years. This illness can be incredibly isolating and I am glad to have access to this community in what has undoubtedly been the most trying time of my life. + +Just wanted to drop in and share what’s been working for me for the past few weeks. + +From left to right: **Tirzepatide, Thymosin Alpha 1, TB-500, KPV, MOTS-C, SS-31, NAD+, GHK-Cu, BPC-157, and Epithalon.** + +Tirzepatide has definitely been a game changer. I think it has improved my mitochondrial function and lowered inflammation which is allowing everything else in my protocol to work better. + +If there is enough interest here, I can elaborate further on what my rationale has been for using these peptides, and the specific protocol I am following. I will also be posting about all the supplements, medications, and other treatments I have tried. + +My condition has improved so drastically that I have been going on 90 minute bike rides without crashing. In fact, I went on two such rides in a 12-hour window today. Brain fog has mostly elevated, and I feel hopeful for the future again. + +At one point, I was bedridden for a couple of months so it feels like I am coming back from the dead. + +Anyway, hope this information helps somebody here. Don’t hesitate to DM if you have questions. + +Wishing everyone peace and great health. Hang in there! 💪 + +--- + +[Upstream reply] +Thanks a lot for sharing this! +May I ask where u source these? +I’m in Europe and I am very interested in trying peptides to help me heal. +If you’re not in Europe, please tell me how you found a trustworthy source.","Hey! I get them from Lithuania, check out https://www.reversebodytime.com/ +My friend is a longevity doctor and is working with this company. I'm trying out Thymosin alfa at the moment. +Peptides come in a application pen, you just set the dose and inject it. I find it very elegant🤔" +irr-pilot-072,covidlonghaulers,2026-03-22,comment,,"[Upstream reply] +I’m on ALA 200mg and CoQ10 (ubiquinone 100mg) twice a day (was once a day, but went on Metformin so upped it to 2x). I’ve been on LDN for 2 years? I’ve titrated up to 10mg currently. I’m being seen at Stanford LC Clinic and I think they want me to try up to 12. I didn’t notice sleep improvement until I got to 4mg but boy did it do wonders from that point on. I do 3g L citruline and 6g L arginine daily. Watch your blood pressure- I’ve always been spot on 120/80 but it went up a bit since LC- and these supplements can bring it down, sometimes too low. And if anyone is on heart medications, both of these supplements should be run by your cardiologist first. + +--- + +[Upstream reply] +Im exactly the same. Always had a 120/80 after covid it went into the 140s... Looks like we have similar situation. Did ldn also helped with the libido?","Unfortunately no. Nothing I’ve done has helped libido. It’s possible some of my medications are decreasing my libido- I’m also on Guanfacine for brain fog (helped that tremendously!) and decreased libido is a possible side effect. I’m switching tomorrow to the extended release version as that supposedly helps decrease all side effects with that particular med. The other med I take is OTC Zyrtec, which again can decrease libido in some people. So can’t say for sure what LDN is doing for me in that regard." +irr-pilot-073,covidlonghaulers,2026-03-13,post,Acupuncture Side Effects,,I’ve been feeling pretty good for years fatigue wise with all the functional medicine I’ve done. You know that fatigue post covid that feels so dizzy? It’s the fatigue after being sick that is so heavy and debilitating. I got acupuncture last Friday and it feels like I’m post covid all over again? I kicked my long covid like 2 years ago and still had some shitty symptoms from EBV & Hashimotos but could still function. Now I’m tired as fuck. I got it done last week. Is this gonna go away or did it activate by EBV or something +irr-pilot-074,covidlonghaulers,2026-03-12,comment,,"[Parent post: LDN (Concerned to try)] + +My main symptoms are fatigue, PEM and some dizziness. Nervous system is out of wack too at times. This has been going on for about 14 months. + +I just got LDN. Is it worth it and tell me your experience? + +--- + +[Upstream reply] +my advice, start LOW. idiot PCP prescribed it at 50 mg. finally a covid doctor started me at .5 mg - it made me MORE tired. unbelievably tired. another covid doctor convinced me to go as low as .1 mg. YAY! it's not a cureall. my heartrate is extra elevated - but I also have moments now where I almost forget that I have LC.","Holy crappppp! 50 mg just made my skin crawl. Like woahhh.. I know you were sleepy as hell and had headaches. + +I’m struggling getting up to 4mg" +irr-pilot-075,covidlonghaulers,2026-04-02,comment,,"[Parent post: ~4 years of chronic symptoms; looking for advice/insight] + +Hey guys — I’m hoping to get some fresh perspectives because I feel pretty stuck and honestly super confused about what’s driving my symptoms at this point. Mood has been rough as a result, and no antidepressants seem to help. Would love anyone’s insight or just someone to chat with about things. + +⸻ + +Background / Timeline + +• Mid-20s male + +• Symptoms started \\\\\\\~4+ years ago (around COVID/vaccine timeframe) + +• No major trauma that would explain structural issues + +• Symptoms have progressively worsened over time, haven’t been able to drive a car or work in 2 years + +⸻ + +Main Symptoms + +• Constant head pressure + “gunk” feeling in brain (very physical sensation; feels like brain damage at times (despite normal brain MRI a year ago)) + +• Severe brain fog (feels physical, not just cognitive) + +• Derealization / dissociation + +• Much worse in stimulating environments (stores, airports, social settings) + +• Feel “not fully present” / almost alien-like + +• Dizziness / lightheadedness when standing + +• Brutal fatigue, especially first 1–2 hours after waking + +• Nearly daily headaches + +• Sensitivity to light + real-world 3D motion (not triggered by screens) + +⸻ + +Circulation / Autonomic-type symptoms + +• Heart palpitations / forceful heartbeat + +• Heart rate sometimes elevated, but not always + +• Face, neck, and chest flushing after things that are vasodilating / raise body temperature / exertion + +• Leg heaviness / tightness (especially left side) + +⸻ + +Other physical symptoms + +• Eye pressure / irritation / “popping” sensation (very bothersome, feels like pressure or fluid builds up behind eyes or something, have to mess with them/blink forcefully etc) + +• Neuropathic itch (gabapentin helps this specifically) + +• Abdominal / groin area pain , also GI symptoms mostly leaning towards constipation/slow transit + +• Chest pain + +• General feeling of being overstimulated / neurologically off + +⸻ + +Diagnoses / Findings + +CCI (Craniocervical Instability) + +• \\\\\\\~8.5 mm C1–C2 overhang (left side on bending) + +• Transverse ligament laxity + +• BUT: + +• Symptoms are not strongly positional + +• I don’t have classic severe neck pain like many CCI patients + +👉 I had PICL + vagus nerve hydrodissection with Centeno-Schultz in mid-February + +→ No noticeable improvement yet + +⸻ + +Vascular + +• May-Thurner syndrome → 93% iliac vein compression + +• Got a stent \\\\\\\~2 years ago → no symptom relief + +• Vascular workup last year: + +• Venous insufficiency + reflux in legs; offered ablation procedure but didn’t seem convincing this would be causing all symptoms; I do get blood pooling in legs a lot though + +⸻ + +Other + +• Slow COMT genotype + +• No single diagnosis tying everything together + +⸻ + +What I’ve Tried + +• Extensive long COVID / “vaccine injury” protocols + +• SSRIs (Lexapro, Zoloft, etc) + +• Various neuro meds (gabapentin helps itch only) + +• Supplements (mitochondrial, anti-inflammatory, etc) + +• Autonomic-related approaches, long list of meds and supplements + +• Nothing has made a meaningful dent overall + +⸻ + +Lifestyle + +• Diet: average, not much for breakfast/lunch, big dinner, some snacks on and off during day + +• Nicotine: 4–5 Zyn pouches/day + +• Used to use more + +• Symptoms worse now than before → doesn’t seem like the main driver + +⸻ + +Where I’m Confused + +I just don’t know what’s actually driving this. + +Possible buckets I’ve considered: + +• Autonomic dysfunction / dysautonomia + +• Vagus nerve dysfunction + +• Glutamate excitotoxicity / CNS overstimulation + +• Cerebral blood flow issue + +• Venous outflow issue / jugular vein compression + +• CCI (but symptoms don’t fully match typical cases) + +• Vestibular migraine–type process + +• Central sensitization / sensory gating issue + +⸻ + +Main Question + +What does this sound like to you? + +• Has anyone had a similar cluster of symptoms and found a root cause? + +• Anything I might be overlooking diagnostically? + +• Does this seem more structural, vascular, or nervous system–driven? + +⸻ + +Goal + +I’m not looking to just manage symptoms forever — + +I want to understand what’s actually causing this so I can target it properly. + +⸻ + +Appreciate any thoughts 🙏 + +--- + +[Upstream reply] +I read that up to 70% of people with LC have mast cell issues, so I always recommend that people try treating from that angle if they have not.  + + +In my experience, my degranulating mast cells were damaging my connective tissue, which affects EVERYTHING. Histamine has been found (along with tryptase) to weaken connective tissue, so your veins, your muscles, anywhere collagen is found in your body. They affect your nerves as well. + + +My neck was so weak that I felt like a bobblehead and had a ton of neck pain. I had many of your issues: flushing, overstimulation, groin pain, dizziness, fatigue, headaches, heart rate stuff, etc. etc.  + + +The protocol my POTS cardiologist gave me is at the bottom of this post in the picture:  + + +https://www.reddit.com/r/covidlonghaulers/comments/1g7ha45/crashing_around_menstruation_studies_and_info_dump/ + + +What ended up helping me is here, but everyone is different: + + +https://www.reddit.com/r/covidlonghaulers/comments/1lzsml7/update_to_crashing_around_menstruation_post/ + + +I hope you find something that helps you! It took about two years for me to find the right combo of meds. Also I forgot to include the perrin technique in my list of things that help, and I need to do one more update because LDN has helped me a ton once I got to 3mg.",I haven’t noticed any differences from any antihistamines and ketotifen / Pepcid either. And I don’t really seem to react to foods/smells. Makes me think it’s not MCAS +irr-pilot-076,covidlonghaulers,2026-03-23,comment,,"[Parent post: Canadians: Has anyone found a doctor willing to treat micro blood clots?] + +I did testing with Dr. Vaughn in the US and tested positive for microclots and endothelial damage. His clinic recommends treating this with anticoagulants but to continue care with him is far too expensive. My local (Ontario) pcp sent a referral to a hematologist but he declined it because the Canadian healthcare system isn’t super aware of microclots yet apparently. My pcp said it would be up to me to find a doctor willing to treat me. Anyone had any luck and can recommend a doctor? Hopefully in Ontario but I’ll take any recommendations ❤️ TIA",">*microclots and endothelial damage* + +I suspect I have these, so I'm taking nattokinase and pycnogenol supplements. + +What supplements and drugs are you on?" +irr-pilot-077,covidlonghaulers,2026-03-13,comment,,"[Upstream reply] +Been on it for 4 years, discovered it early with the help of AI. Been on 1-6g/day, now 3g/day. + +In my experience (which won’t be everyone’s) it makes a significant and noticeable difference. + +--- + +[Upstream reply] +What significant difference have you noticed?","Varied over time, but broadly helpful. + +Early on, before i fully understood the role of glutamate / excitoxicity in my condition, Taurine played a huge role in buffering dietary glutamate - reducing anxiety-like reactivity to foods and reducing flare-ups in particular. + +Since getting diet fully under control, it provides noticeable and broad stabilization support along the GI-brain axis and often helps notably with LC debilitating fatigue onset. + +It and nicotine were responsible for reducing a lot of the painful and concerning symptoms (heart area pain, feeling of strain/overwork; bounding pulse throughout the body; parasthesia-like effects in legs, just to name a few) experienced, especially before pharmaceuticals were introduced which have further stabilized things." +irr-pilot-078,covidlonghaulers,2026-04-07,comment,,"[Parent post: What can cause neuro symptoms to inexplicably return?] + +I was able to slowly make enough of a recovery over the winter to return to indoor exercise at home. A few weeks ago I take the bike out for a ride around town for the first time this year, next day all the neuro symptoms slowly come back and have remained ever since. (brain fog, concentration and visual focusing issues) + +I'm trying to make sense of what could have caused this. If it's not PEM, then was it the overstimulation of everything around me that caused the strain? + +My other thought is maybe an asymptomatic reinfection came and went without me knowing and that caused this.","For allergies start with something like Claritin and Pepcid. If you haven't used them before, try each for two weeks to make sure you tolerate them. As my doctor suggests, I then combined them and my full body itching went away, thank God. Check out the BC Centre for Long Covid, ME/CFS and Fibromyalgia at bc-clmf.org + +Under Resources there is a section on medication handouts. Look for the one that starts with MCAS and there is a protocol there to test for MCAS using different meds." +irr-pilot-079,covidlonghaulers,2026-03-25,comment,,"[Upstream reply] +Antihistamines have me able to function. +Unfortunately I’ve been taking them everyday for 3 years now, I tried to stop and 3 days later I could barely get out of bed so I’ll just take forever now I guess + +--- + +[Upstream reply] +Same... I was able to SLOWLY decrease the amount by half a pill during the winter, but it's definitely something to wean off of. Overall though I'm still on 3.5 pills per day. Probably forever as well. I might try decreasing again in the fall when it cools off (heat is a trigger for me) by another half a pill depending on if I keep getting benefits from LDN. I'd eventually like to be down to 2/day + + +Overall though I'll take a pill if it means I don't feel sick as a dog every day","That’s where I’m at mentally too, if I have to take the pill to function, well that’s just the way it is" +irr-pilot-080,covidlonghaulers,2026-03-15,post,"For people who get cognitive PEM (headaches/brain fog after reading, socializing, screen time, etc.)",,"1. Do you understand why this is happening? +2. Have you worsened your baseline ever as a result of pushing yourself cognitively? We hear a lot about people's baseline worsening after going for a run or being physically too active, but I don't hear about that as much on the cognitive side. +3. How on earth do you pace for something like this - especially if you are working and looking at screens? +4. Have you found anything that helps? (I'm on LDN already)" +irr-pilot-081,covidlonghaulers,2026-04-08,comment,,"[Upstream reply] +Are you on any antihistamines? Otherwise I would agree that lack of sleep would be seriously disrupting any ability to get out of the acute stage. + +--- + +[Upstream reply] +I'm not taking any antihistamines, should I take some?",I've been taking h1 and h2 together (zyrtec and pepcid) twice a day and it's really helped me sleep since I got covid 2.5 yrs ago +irr-pilot-082,covidlonghaulers,2026-03-23,comment,,"[Parent post: This week will make 6 years since my life was taken for me] + +6 years of this hell I can’t believe it, I honestly been with this so long it’s what now seems normal for me now. I’m home in bed all day everyday. Oh yea my wife of almost 5 years (been together 10) wanted a divorce so I had to hire people and friends to drive and pick up all my stuff and I had to rent a storage unit and all my stuff was placed inside it, now I’m back to living with my parents cause I can’t be on my own. She thinks my disability is fake, even tho I been to a million doctors, been on a million meds, have doctor notes stating I’m disabled, she seen me having nervous breakdowns, severe anxiety attacks, I can’t ever sleep I need prescribed meds to sleep covid took away my ability to sleep I literally will be up for days and still wont sleep. I also have chronic fatigue, migraines, pains in my eyes, behind my eyes, fibromyalgia, yea my life really sucks. She took away my step daughter which I considered my daughter cause I was her father since she was a little girl. I literally have nothing and nobody. I sit alone at night praying for my life to be taken because I have nothing worth living for anymore. My health was taken from me, my life partner doesn’t wanna deal with me anymore, my daughter was taken from me, so lucky New York isn’t a legal to carry state cause I probably woulda off’ed myself already, always bad news never good!!!","I had the never ending insomnia, belsomra helped but it took a while. The main thing I found was that pushing my brain to think was what caused the insomnia, so learning to stop and rest was very important. +Which is very hard when there are other people in your life because there's always a reason to push just a little harder. I also lost everyone but I guess that was ""helpful"" for me too, at least in regards to this." +irr-pilot-083,covidlonghaulers,2026-04-10,comment,,"[Parent post: Has anyone tried peptides?] + +Has anyone tried or thought of testing peptides? I am just curious for more knowledge on the subject, not encouraging anyone to take it blindly.","Honestly yeah, I’ve looked into them and tried a couple over time. Results were kind of mixed for me, so I started paying more attention to consistency and info Lyze Labs was one I came across during that process." +irr-pilot-084,covidlonghaulers,2026-03-18,comment,,"[Parent post: pacing feels off even when data looks ok?] + +I’ve noticed my data (sleep, HRV, activity from Apple Health) often doesnt match how I actually feel, can look “ok” on paper and still crash from something small. using iOS / Apple Watch and tried combining data with how I feel during the day in different ways… still doesnt really line up tbh. what have people here actually tried, any apps or methods that actually help a bit? seen something called PaceME mentioned but not sure if it helps or just another tracker. how do you deal with it, trust body over data?","Trust body over data for me. I stopped tracking my sleep quickly as it felt inaccurate and stressed me out. I used to pace based on heartrate, but since my heart rate hase gotten healthier I have to listen to my body. It's more subtle signs now and not a sky high heartbeat. Also I keep within known boundaries even if I feel great (if I've got the discipline). Because if I do something I love I feel great because I am mentally or socially being fulfilled. That doesn't mean my body can keep up sadly." +irr-pilot-085,covidlonghaulers,2026-03-20,comment,,"[Parent post: What supplements made the cut for you?] + +If you’re like me, you’ve had Long Covid (overlapping with ME symptoms including PEM) and your body has been a science experiment. You’ve tried all kinds of supplements over that time. Which ones made the cut for you? What’s the stack you kept? Mine is: + +Oxaloacetate + +NAC + +L Cittruline + +Rhodiola Rosea + +Acetyl L Carnitine + +D-Ribose + +NMN + +CBD Oil + +Magnesium Threonate","- Vitamins B2, B12, D3 +- Iron bisglycinate with vitamin C +- Magnesium glycinate +- Electrolytes blend (sodium, potassium, magnesium)" +irr-pilot-086,covidlonghaulers,2026-03-25,post,Renewed energy AFTER keto?,,"Longhauler since november '23 here. Tried keto for a couple of months early last year. Results were negligible, but was oddly energetic during the summer, as in, *after* I quit keto. It lasted a blissful few months, then it was back to baseline. + +Wanted to test it, so went on the diet again (strict, max 15 gr carbs a day) for three months. And again, no clear benefit while on the diet. But after reintroducing carbs, I've been feeling a lot better. Not pre-LC better, but noticeably better. + +My current theory is that keto is not beneficial to me per se, that my body welcomes carbs after having been deprived of them for a while, but once used to carbs, it's back to previous (poor) condition? + +Am I mad? Anyone else had something similar?" +irr-pilot-087,covidlonghaulers,2026-04-03,comment,,"[Parent post: Hello, is there anybody out there?] + +I have had this for six years now. It used to be that if you were very ill, you would go to the hospital to feel better. I have been to the hospital begging them to help me to live. I just want one shitty day. The medical facility and doctors have really let us down. I wouldn’t wish this on anyone. When I get my test results back, I wish they would tell me I’m dying at this point. I have zero quality of life. I have tried all the diets and all the drugs. The only thing that kept me going was the forbidden drug Xanax and steroids. I knew it was to good to be true. I can’t take steroids now because I will get Cushing disease. Now I am a bed ridden piece of flesh. Whatever this is has been attacking my kidneys. I had/have kidney stones. My latest test results was abnormal this and abnormal that. My new diagnosis is medical renal failure. So, my question is where do we go.","https://synapteklabs.com/protocol-on-sending-blood-samples-2/ + + +Neuroscientist offers double filtration plasmapheresis before and after 2 weeks of daily stem cell growth factors. It's 42k for the time in Tokyo hospital (which provides the equipment/facility.) The fact it's costly and not widely accessible shows you the popular profit model for chronic illnesses." +irr-pilot-088,covidlonghaulers,2026-04-08,comment,,"[Parent post: Has anyone tried peptides?] + +Has anyone tried or thought of testing peptides? I am just curious for more knowledge on the subject, not encouraging anyone to take it blindly. + +--- + +[Upstream reply] +I've tried a lot of peptides. SS-31 and MOTS-C definitely helped, but nothing else has helped as much as HGH. It takes a few months to really kick in. + +[https://www.utmb.edu/news/article/utmb-news/2024/06/20/growth-hormone-alleviates-some-long-covid-symptoms-utmb-study-shows](https://www.utmb.edu/news/article/utmb-news/2024/06/20/growth-hormone-alleviates-some-long-covid-symptoms-utmb-study-shows) + +According to this study, I'll have to keep taking it indefinitely - and that's fine with me. + +>“Subjects had significant improvement in self-reported measures of fatigue, depression, mood, and quality of life over the nine months when they received growth hormone but symptoms returned when treatment ended,” said Dr. Traver Wright, lead author on the study and professor in the Department of Internal Medicine at UTMB.","I'm in the prediabetic range if I don't take metformin and my biggest trade-off concern is that anything that increases HGH means huge jumps in glucose levels. + +I've tried ipamorelin but it results in my glucose jumping from normal levels to full diabetic levels overnight. + +If the cure is worse than the problem it's not a good one 😔" +irr-pilot-089,covidlonghaulers,2026-03-23,comment,,"[Parent post: Did anyone try this probiotic?] + +[https://www.rthm.com/resources/blogs/probiophage-df-supplement-guide](https://www.rthm.com/resources/blogs/probiophage-df-supplement-guide) + +Just stumbled upon this article and wondered if anyone tried this before. Haven't heared of them before but it sounds interesting to have bacteriophages mixed in there to only fuel certain bacteria. + +But i am also wondering how far we can get with this type of intervention alone. If recent papers turn out to be true than we might have to adress persistent antigen first in order to allow the gut to heal. + +[https://www.cell.com/developmental-cell/abstract/S1534-5807(26)00076-6](https://www.cell.com/developmental-cell/abstract/S1534-5807(26)00076-6) + +[https://www.sciencedirect.com/science/article/pii/S1933021926000267](https://www.sciencedirect.com/science/article/pii/S1933021926000267) + +I am pushing to try out fenofibrate since it is a PPAR-a activator, i will report back if anything happens. + +take care everyone! + +--- + +[Upstream reply] +I would recommend getting microbiome testing (like Biomesight) before you start something like this. + +The microbiome is complicated and you might not have certain deficiencies that this is addressing.","Thanks for your input! + +I did get my microbiome tested 1,5 years ago and also recently but still waiting on the results. + +I was not actually planning on taking these specifically, just wanted to hear if anyone had experience with it since it seems to be a little different than other probiotics. + +My LC is mostly neuro but my GI tract got messed up at the same time and was very resistant to treatment until i got a colonoscopy, which miraculously solved like 70% of the GI stuff. Since then i have plateaued, even with targeted pro and prebiotics. I do not have strong gut symptoms but i believe that it never fully healed and that the leaky gut is strongly influencing my neuro symptoms." +irr-pilot-090,covidlonghaulers,2026-03-25,comment,,"[Parent post: I just can’t ever sleep properly anymore] + +This is so frustrating. Every time I try to sleep especially my day naps, I always wake up in panic as if my body does not want me to sleep. I start feeling these weird jerks and my head feels like I’m falling off a rollercoaster. wtf is goin on. I am just so tired of this shit.","16 months of it, not once did it not happen. First 3 months i would get it 200+ times a night, until i became hospitilized with 1 to 2 hr per day of sleep. High dose gabapentin stops it, but will turn you into a grandpa zombie. I had to use ativan + valium to get sleep but quit because it wasnt a long term solution." +irr-pilot-091,covidlonghaulers,2026-03-13,comment,,"[Upstream reply] +I wondered about this but I had Lyme and EBV (plus a bunch of other things) tested while I was at my worst and nothing ever came back positive. Even my autoimmune and thyroid stuff was all fine. + +--- + +[Upstream reply] +Lyme testing is notoriously bad. The serology was negative for me as well, all the symptoms aligned,so testes via FISH test which was positive for several tick borne infections","I know Lyme testing can be sketch and have considered getting more thorough testing, but it was more a rule out to pursue other testing and not based on my symptoms aligning. +I was on vancomycin for *months* lol so if there was some lymie boys in there maybe I killed two birds with one stone." +irr-pilot-092,covidlonghaulers,2026-04-10,comment,,"[Parent post: I was accepted into the remote lumbrokinase trial! 🥳] + +If you haven’t heard, **Mount Sinai is recruiting for a lumbrokinase clinical trial**. It’s meant to **dissolve microclots** and improve symptoms like fatigue. + +It works **similarly to nattokinase, but it’s made from earthworms rather than soy**. So if you have a soy allergy like me lumbro is the way to go. + +The clinical trial has 2 options: **in person in New York or remote**. I’m bedbound so I’m doing the remote option. + +During the screening they mentioned the in-person option involves multiple visits, blood draws and some sort of activity testing. The remote option has none of that. + +I think there’s also a small cash incentive, like $100 if you participate. + +Anyway **just wanted to share my good news** with people who understand. I crashed last week and I’ve been severe for years, so any hope is good news. + +**If you’re interested in applying** here’s where you can do that: https://www.mountsinai.org/clinical-trials/lumbrokinase-for-adults-with-long-covid-posttreatment-lyme-disease-syndrome-and-myalgic-encephalomyelitischronic-fatigue-syndrome + +--- + +[Upstream reply] +Lol this is a supplement. I cant believe companies are wasting money on this","In [this study](https://www.pnas.org/doi/full/10.1073/pnas.2426874122) Lumbrokinase/Nattokinase was reported by patients to be at least somewhat helpful to ~50% of people (n=905), and over 27% considered it moderately effective or more (see Appendix 1). It's not a waste of money to run a proper trial on this." +irr-pilot-093,covidlonghaulers,2026-04-03,comment,,"[Upstream reply] +I am on it every evening 0.5mg it helped me to sleep as well but since I got this new shi\* I have insomnia + +--- + +[Upstream reply] +Did it helped when it was on your mouth or throat? Usually how much time it takes to go away?",Cromolyn helped the most. Since I got that it took maybe 1-2 weeks to recover. But this... I cant help it. I want my smell and taste back I am gettin really depressed now +irr-pilot-094,covidlonghaulers,2026-03-13,comment,,"[Parent post: Having Trouble Coping] + +i cannot believe that this is going to be the rest of my life. + +--- + +[Upstream reply] +It got a lot better with time & supplements for me. I still feel I'm improving as time passes. Hang in there.",what do you take if you don’t mind me asking? vitamin b2 did nothing for me. same with coq10 but i still take it nonetheless. the only thing that’s helped is magnesium. +irr-pilot-095,covidlonghaulers,2026-03-12,comment,,"[Upstream reply] +I refused ldn when my doctor first offered it. I did research and was dying to get to next appointment. I asked him to prescribe it and I’ve had I’d say a 70% improvement. No longer fully bed bound and can stand for shower. + +Go LOW and SLOW and follow docs directions on titrating up. Anything’s worth a shot when you are in the dumps. + +--- + +[Upstream reply] +do you know if this something we'll be dependant on? as in your symptoms come back if you stop taking ldn?","I’m assuming so but I have absolutely no idea. I’m okay with taking it for the rest of my life… the tradeoff is major for me… hardly any side effects but major improvement. It would be a good thing to ask your doc. + +Nausea, fast heartbeat and a tad of restlessness or anxiety are my symptoms." +irr-pilot-096,covidlonghaulers,2026-03-13,comment,,"[Upstream reply] +Did you try to address the issues with other treatments first. Fasting has helped me, but it's a pain in the ass (no pun intended). + +--- + +[Upstream reply] +As a uterus haver in perimeno, fasting is not something that works for me. It makes me feel infinitely worse. Post covid I struggle to feel hungry and often undereat, and making my food intake window smaller doesn’t help that at all either.","I have an eating window of about 6 hours. I've been doing this for about a week. It's par voluntary/part involuntary. I pushed through a period of PEM and I got bad digestion issues for my trouble. For a few days I could only eat one meal a day. Slowly, it improved, but not totally. + +The boredom and not having the pleasure of eating what I want, when I want is a high price. I feel a little better with my neurological symptoms, but that's about it. The protocol I'm following recommends 10 weeks eating in a 10 hour window." +irr-pilot-097,covidlonghaulers,2026-03-11,post,BP meds: For those sensitive to medication.,,"Everyone’s reaction will vary. I just want to add that I took one single (small) 10mg dose of Olmesartan and it made me very drowsy for an entire day and more. With that drowsiness was a feeling of even slower cognitive function. + +LC raised my already borderline blood pressure and since I can’t exercise, I see no other way. I hope to find one that doesn’t affect me badly. I’m underweight already and salt isn’t my issue either. + +I will say my gut is screwed up from antibiotic use, so I’m sure that exasperating things as well." +irr-pilot-098,covidlonghaulers,2026-03-27,comment,,"[Parent post: I've had covid living in my sinuses for 3 years. Yes, really.] + +So I wish I was joking. + +I've been treated for everything under the sun after catching asymptotic covid in 2022. I then caught another strain which came up in tests, so I was given Paxlovid which helped massively and I (thought) cleared it up. + +However, for the past three years, I've had a gurgling sensation in my throat, lungs and wall to wall swelling in my sinuses which is causing hearing loss and ringing. + +I went to several GP's and ENT's. They threw everything at it - PPI's, saline sprays, antibiotics, antifungals, antihistamines. + +I was on antifungals from 2024 - 2026 as long covid gave me a fungal infection in my sinuses too. + +But I've never been able to get rid of the gurgling sensation in my throat, the ringing in my ears, the painful swelling in my nose. + +I take Lysine which helps marginally. But after seeing a covid specialist, he believes I have covid living in my sinuses. He suggested saline sprays again - and living on a prayer - as it's clearly nested and made its home inside of my nose and ears. + +Is anyone else living with these symptoms? + +--- + +[Upstream reply] +I’m unclear from your post. Have you been testing positive on rapid tests this whole time? How do you know you’ve had Covid this whole time?","Maybe there has been an edit but there's no mention of continually testing positive. I'm inferring that the illness started and they concluded it was asymptomatic Covid. Then got sick and tested for Covid. Long Covid symptoms got worse. It sounds to me like an assumption that there is a viral reservoir in the sinuses, which we all know is a hypothesis. I don't know why anyone would prescribe saline sprays to fight a viral reservoir, especially after they'd had an antiviral." +irr-pilot-099,covidlonghaulers,2026-03-13,comment,,"[Parent post: Panic attacks on tirzepatide?] + +Anybody on semiglutide or tirzepatide experience huge increases anxiety and panic attacks? + +I’ve had tremendous success with reducing my overall pain and inflammation with tirzepatide. The last batch I ordered seemed to cause both me and my girlfriend huge increases in anxiety. I usually only do 0.5mg per week but I increased it to 1mg per week and we bought from a new supplier. So idk if it was the quality of the tirzepatide or the dose that caused this. + +Is anyone else experiencing the same thing?","Made me and brother feel more than a panic attack could barely walk to the mailbox we were so fatigued, while fighting the coma sleep feeling off." +irr-pilot-100,covidlonghaulers,2026-03-17,comment,,"[Upstream reply] +That one person sued and won a million dollars because their employer wouldn’t let them work from home to accommodate their disability caused by long Covid + +--- + +[Upstream reply] +Who was their lawyer? I got absolutely f’ed by my last employer (had remote note and was required to go in anyways - then contracted covid/long covid at the office). Then I was let go after almost 15 years with no severance or anything. My job was even posted before my FMLA protections were up. Their disability insurance was a joke as well and they gave me the run around and never really paid for my time off. +Seriously…I’m having a hard time finding anyone to help from a legal standpoint.","My gosh, that's an absolute horror scenario. I am so sorry this happened to you. I hope you find a good lawyer and get some justice." +irr-pilot-101,covidlonghaulers,2026-03-17,comment,,"[Parent post: LC = Downvote] + +Received my first Reddit downvote on an unrelated sub earlier, the only comment I've made on Reddit that mentioned that I am a Long COVID patient. + +Coincidence? I think not.... + +Stay strong people. ✌🏾","I used to unknowingly do accidental downvotes because of my clumsy thumbs touching the downvote arrow while scrolling on my phone. + +I got extra clumsy from the combination of multiple chronic illnesses caused by LongCOVID like arthritis, ME/CFS, blurry vision, ""brain fog"" etc. + +Took me a while to notice I was doing it and then try to move my thumb carefully and with more awareness to undo it if I noticed it. + +Hopefully your downvote is just because of someone like me appreciating your comment but also having clumsy thumbs. + +🙃👍💕" +irr-pilot-102,covidlonghaulers,2026-03-12,comment,,"[Parent post: Hard to describe feeling] + +Wondering if anyone can relate. I got Covid in May 2024 and then long Covid. It’s always been difficult identifying exactly how I felt. Fatigue for sure, along with insomnia, headaches. But these episodes where I felt like I was having some sort of episode. I can only liken it to a cross between an anxiety attack/low blood sugar sort of thing. Whole body feels off. Achy, stomach off, woozy head and try to nap it off but wake up with increase these bizarre jerk awakes and increase anxiety. + +About 15 months I started feeling better. Not my old self, but functional. But I am still subject occasionally to these episodes. Anyone know what I am talking about?bin the middle of one you almost feel like you need to go to the ER or something. Weird.","I’ve experienced something similar but histamine blood test negative and was perceived antihistamines anyway. Took the antihistamines and saw no difference. + +I still get these episodes. I don’t know what the are, what cases them or how to treat them" +irr-pilot-103,covidlonghaulers,2026-04-05,post,Testosterone for afabs,,"hiya, wondering if any other transmascs on here have started T and what effect, if any, it's had on your long covid symptoms? + +I'm in two minds about it for gender reasons (I'm non binary, weighing up whether the changes would be worth the hassle and expense) but if it would help with LC I'd jump at it. basically looking for some anecdata to chew over while I consider! + +I'm also on the combined patch (e + p) which has helped, mostly by evening out my energy (I don't skip a week so don't get the fluctuations around a menstrual period) and controlling my migraines. might end up with the trifecta lol + +no 'phobes pls thank youuu" +irr-pilot-104,covidlonghaulers,2026-03-12,comment,,"[Upstream reply] +Hey, I also have MS (+ hEDS), which in my case started after COVID. I went through the standard route of being told “you’re completely fine, it’s just anxiety,” only to be diagnosed with MS four years after my first symptoms. I was lucky enough to find a clinical trial for a drug being considered for both MS and long COVID (IMU-838). I used to work as a biomedical scientist before all of this, so I approached it by first identifying a drug I wanted to try and then looking for a doctor or place where I could access it — not the other way around. I’m also in my first week of LDN and already feel like it’s helping — yesterday I regained another bit of my sense of smell, which I had almost completely lost for two years after COVID. + +--- + +[Upstream reply] +Fascinating! Congratulations on regaining some of your sense of smell. What dose of LDN are you on? If your screen name is your real name, then this will be the first time that I’ve seen mention of a male being fobbed off by doctors as having “anxiety”, I had thought it was basically only women. It just goes to show they suck but at least they do it equally! Dark humor aside, I searched for IMU-838, I will have to keep an eye on the Australian clinical trials registry as it is currently not available here. As a biomedical scientist, what are your feelings on the GLP1 receptor agonists being used off-label for post viral syndrome? What do you think of hydroxychloroquine for long Covid too?","Unfortunately, I’m a relatively young-looking woman (36 yo), so obviously I’m perfectly healthy, just seeking attention, and dealing with anxiety — maybe bipolar too, but I guess that would require additional testing. /s + +I’m on 0.5 mg LDN right now and plan to stay on it for at least three weeks before increasing the dose. + +GLP-1 looks very promising, and I did try it for a while before enrolling in the clinical trial. In my case, the problem is that I’m already trying to maintain my weight because I’m close to being underweight, and I’m also prone to gastritis. Unfortunately, I don’t have any specific knowledge about hydroxychloroquine." +irr-pilot-105,covidlonghaulers,2026-04-05,comment,,"[Parent post: NSAIDs Effects in Long COVID] + +Hey all, I'm researching the role prostaglandins play in Long COVID pathophysiology and wanted to collect data on people's experiences in this subreddit. + +For those of you who have taken NSAIDs during the time you have had Long COVID symptoms (whether you took them for LC or something else), what effect did you notice? + +Common NSAIDs include: Ibuprofen (Advil), Naproxen (Aleve), Celecoxib (Celebrex), among others. + +Your input is appreciated. + +[View Poll](https://www.reddit.com/poll/1sddrht)",I take 2 ibuprofen & 2 Tylenol twice a day. I take less when I feel better & more when I feel worse. I can’t tell you exactly what they do but I definitely am worse off when I don’t take them. More functional on them less without them. I’m guessing reduced inflammation & pain reduction. +irr-pilot-106,covidlonghaulers,2026-03-15,comment,,"[Upstream reply] +Shit I have both. Do symptoms do the get after antibiotics + +--- + +[Upstream reply] +I’m sorry what’s the question ? I don’t understand.",So sorry I should’ve been more specific. For individuals that have gut issues and MCAS do you know what the lingering symptoms one may have after being on antibiotics. Right now I have anxiety food intolerances and anhedonia. +irr-pilot-107,covidlonghaulers,2026-03-13,comment,,"[Parent post: Omicron Long-COVID Symptoms] + +I had COVID twice, but the first time was the one that really knocked me out. It was December 2021 during the Omicron wave. I’m pretty sure I’ve had long-COVID effects since then. I already had POTS before getting COVID, so a lot of my symptoms just felt like my POTS got worse. + +However, one symptom that felt very specifically long-COVID related was a complete loss of hunger. At the time, I saw a lot of people online saying they had the same thing with Omicron, and my partner at the time also experienced it. + +The issue is that my hunger never came back. + +Even now, years later, I don’t experience “traditional” hunger signals. I can go 24 hours without eating and not feel hungry at all. The only way I know I need to eat is when I start getting lightheaded, cognitively weird, or my stomach physically hurts. + +I know there may not be much to be done about this medically, so I’m mostly curious about other people’s experiences. Has anyone else had long-term loss of hunger like this after COVID? If so, did you also have Omicron? Did it ever improve. For context, I never lost my taste or smell, just hunger. + +Also, I want to gently ask that people not romanticize this. I know some people joke about wishing they didn’t feel hungry for weight loss reasons, but this has been genuinely difficult and disruptive for me. I’d really appreciate thoughtful responses from people who can relate or have insight. Thank you!!","That happened to me. No physical hunger or appetite. I also physically couldn't eat (more than a few mouthfuls a day) for over a month, it was basically gastroporeisis. What helped was a medication called mirtazipine. It's technically an antidepressant, but at lower doses its side effects are increased appetite and sleepiness. It took a year, year and a half or so for things to gradually, progressively normalize, but it worked wonders. I'm currently tapering off (after about 3.5 years on it) but I think it literally saved my life. One of my doctors said that it helps rewire the gut-brain axis." +irr-pilot-108,covidlonghaulers,2026-03-17,comment,,"[Parent post: Recovery rate statistics?] + +I saw this on the Patient-led research collaborative’s page yesterday for long COVID awareness day. Has anyone else seen metrics around recovery rates? Here’s a link to their full report: https://patientresearchcovid19.com/2026-long-covid-fact-sheet/ + +Those numbers are defeating as I’m 2.5 years in from my first infection. + +--- + +[Upstream reply] +I don’t believe anyone recovers to %100.","Somewhere out there is a clip of Fauci on cable news early on in the pandemic where he says every infection, even if asymptomatic, results in a lower quality of life + +I've been trying to find it for a long time now but its been thoroughly buried under mountains of BS" +irr-pilot-109,covidlonghaulers,2026-03-13,comment,,"[Parent post: LDN (Concerned to try)] + +My main symptoms are fatigue, PEM and some dizziness. Nervous system is out of wack too at times. This has been going on for about 14 months. + +I just got LDN. Is it worth it and tell me your experience?","LDN may make you feel less fatigued, but you WILL still have PEM, so like others have said - take it slow! Don’t try to use all your energy at once, let your body adjust. I had the fun side effect of nausea, but a zofran script helps keep that at bay." +irr-pilot-110,covidlonghaulers,2026-03-25,comment,,"[Upstream reply] +I’m so sorry but glad you’re going better. I have so many diagnoses it’s overwhelming. Paralyzed right diaphragm, hereditary hemachromotosis, POTS, moderate aortic stenosis, MCAS, yet to be determined autoimmune issues. I’ve been living a holistic lifestyle since 2013 and following a hotline diet (cut out beef and chicken three months ago). I can’t tolerate probiotics and so many things… all the old tried and true things I’ve done for years, no longer work. But, I refuse to give up. Hang in there! + +--- + +[Upstream reply] +I'm so sorry you're struggling. Please read: [Long COVID and Mast Cell Activation Syndrome (MCAS).](https://www.reddit.com/r/covidlonghaulers/s/JfFg2GVRF5) I have 4 diagnoses triggered by a COVID infection in July 2023, including MCAS. I'd ask if you've seen a Gastroenterologist or had any testing done like BiomeSight to determine what if any problems you have with your gut. For example, if you have SIBO and haven't treated it, nothing you do will improve your symptoms. + +People really owe it to themselves to become research level PhDs if they have MCAS. It's my dominant and worst diagnosis. I understand that it's not always possible. Anyone with MCAS has the power to make their own life better through knowledge, understanding, and advocacy. + +It's taken me over a year to write this fifth version of this post. It's really not that complex once you understand it. I've spent two years learning, researching, writing, and educating others suffering from MCAS how to get proper medical care and attention. Most doctors are just ignorant and uneducated about MCAS. + +Here's a clear explanation as to why the focus is often only histamine. The reason histamine gets so much attention in MCAS isn't because it's the only or most dangerous mediator, but because: + +1)It’s the most studied and best understood. Histamine was one of the first mast cell mediators to be discovered, and it has clear, well-characterized receptors (H1, H2, etc.), making it easier to target with existing drugs. There are decades of research and pharmaceutical tools for it. + +2)It's easy to treat and test: We have over-the-counter H1 and H2 blockers (antihistamines) that can offer fast, visible relief for many patients. Plus, measuring histamine or its breakdown product (methylhistamine) in urine or blood is more accessible than testing for rarer mediators like prostaglandin D2 or leukotrienes. + +3)Histamine affects many systemsm It’s involved in: +Vasodilation (low BP, flushing), itching, hives, rashes, +GI symptoms (diarrhea, nausea, acid reflux), brain (insomnia, anxiety), and lungs (wheezing, asthma-like symptoms). So, it can cause widespread, noticeable symptoms that often respond to histamine blockers. + +4)It’s often the “canary in the coal mine.” For many with MCAS, histamine reactions are the most obvious or the first to flare, making them a gateway clue to the larger puzzle of mast cell dysfunction. + +Mast cells release much more, including tryptase, prostaglandins, leukotrienes, heparin, cytokines, nerve growth factors, and more. These can be just as problematic but are harder to measure, harder to target with existing medications, and more variables between patients. + +I take a carefully crafted regimen of medications, vitamins, and supplements that took over a year to create. I can't take H1 and H2 OTC antihistamines. I react to the medications and/or its excipients. I take Cromolyn nasal spray, Desloratadine, compounded Ketotifen, Ketotifen eye drops, and Montelukast for MCAS. And, Omeprazole for GERD, which also provides gut-specific mast cell stabilization. + +I'm directly blocking histamine and leukotrienes, the two major drivers of MCAS symptoms, and indirectly calming prostaglandins, cytokines, tryptase, heparin, and nerve growth factors by stabilizing my mast cells with Cromolyn nasal spray, Desloratadine, compounded Ketotifen, and Montelukast. Omeprazole addresses gut-specific histamine activity that would otherwise worsen GERD and MCAS-related GI symptoms. That’s why for those who don’t respond to histamine blockers or can’t tolerate them, a broader mast cell stabilizer or anti-inflammatory approach becomes important. + +Good luck🙌",Omeprazole does nothing for me 😢😢 I can’t tolerate H1 or H2 either. I didn’t tolerate ketotifen either but I wanted it to work SO badly. Did you have any initial reactions? +irr-pilot-111,covidlonghaulers,2026-03-31,comment,,"[Upstream reply] +Yeah, that does suck to lose your hobbies and your passion. + +But I think you probably are in a decent position to get it back. + +I'm guessing you lift pretty heavy? All that exertion is using up your available energy stores. As those get depleted, the adrenaline picks up the slack (hence the wired feelings). It can't sustain the job, so you get a crash. When you're in the crash, the body is focusing on replacing energy at the cellular level and production of dopamine (etc.) goes on pause, which gives you that flat feeling. + +(Or at least that's the basic theory.) + +Walking/jogging doesn't trip the crash process because you're in good shape and it doesn't exert the system like lifting does. + +You've gotta quit lifting for a while. You need those energy stores to replenish FULLY for a while. A few months, then start lifting SLOW AND LIGHT. No exertion at all. No flex, no grimace. Work back up slowly over the course of months. You're not building muscle here, you're training your energy production. + +In the meantime, get your ferritin levels checked. You need iron to recover and lots of us are deficient. Ask your provider for a full iron panel. + +And lastly: Keep gratitude in mind about what you *are* able to do. If the only long term impact is weight training, then that's awesome! You can still have an amazing, productive, happy life. I'm not complaining, but I'm currently in a crash cycle where I can't even go -down- a flight of stairs without needing a break. And I'm still so much better off than lots of others here! It's always good to remember what you have, not just what you lost. + +--- + +[Upstream reply] +Thank you. Im in a weird grieving stage at the moment where most logical thoughts and reasoning can fly straight over my head sometimes. You're totally right. + + +First of all, i'm really sorry to hear that you are struggling. I didnt even know this thing existed until a few weeks ago. I feel like the worlds been turned upside down. + + +In terms of ferritin, im at 120ug/l. I had a big blood panel done a couple weeks ago hoping that it'd point me in the right direction, but nothing major came back. The only abnormalities were: + +\- my platelets were slightly below the range (120, the range is 150-300) + +\- my HDL cholesterol was slightly below desirable (1.25nmol/l, desirable is 1.55 or above) + +\- Slighly above desirable Lipoprotein (a) (95.7nmol/l, desirable is below 75) + +\- blood glucose a tiny bit high, this really surprised me since im in good shape and rarely eat sugar, but i suppose it couldve been elevated my stress, as my blood was drawn during PEM. (6.08 nmol/l, optimal is below 5.6) + +\- my urine PH flagged as PH 8, between 5.5-7.5 is apparently the usual.","""I'm in a weird grieving stage at the moment"" + +Honestly, it might sound odd, but that is actually a really good thing to hear! + +It took me a long time to realise I had to grieve the loss of my former self. Sort of like I lost a close loved one. Somebody I knew, and cared for, was suddenly gone. I wanted that person to come back but they weren't going to. + +Grieving that was a big turning point for me in moving forward." +irr-pilot-112,covidlonghaulers,2026-03-12,comment,,"[Parent post: Dream Team Peptide Stack for LC] + +Disclaimer: Not medical advice, just my personal experience for the past few weeks. + +Hola, my LC family. Thank you all for keeping me sane these past few years. This illness can be incredibly isolating and I am glad to have access to this community in what has undoubtedly been the most trying time of my life. + +Just wanted to drop in and share what’s been working for me for the past few weeks. + +From left to right: **Tirzepatide, Thymosin Alpha 1, TB-500, KPV, MOTS-C, SS-31, NAD+, GHK-Cu, BPC-157, and Epithalon.** + +Tirzepatide has definitely been a game changer. I think it has improved my mitochondrial function and lowered inflammation which is allowing everything else in my protocol to work better. + +If there is enough interest here, I can elaborate further on what my rationale has been for using these peptides, and the specific protocol I am following. I will also be posting about all the supplements, medications, and other treatments I have tried. + +My condition has improved so drastically that I have been going on 90 minute bike rides without crashing. In fact, I went on two such rides in a 12-hour window today. Brain fog has mostly elevated, and I feel hopeful for the future again. + +At one point, I was bedridden for a couple of months so it feels like I am coming back from the dead. + +Anyway, hope this information helps somebody here. Don’t hesitate to DM if you have questions. + +Wishing everyone peace and great health. Hang in there! 💪","Great stack! I've done most of those myself for my various chronic issues. I see you're doing thymus and pineal peptides. If you want to dig more into that you can read up on Khavinson's bioregulators.  + + +But, oh my goodness you're paying an arm and leg, plus PS just shut down. Look up stairway to gray." +irr-pilot-113,covidlonghaulers,2026-04-01,comment,,"[Parent post: What would you do or not do if you could go back to when Long COVID just started?] + +I am two months post covid and symptoms just escalating every day! I would like to know what i can avoid or what i can do to improve recovery? I am also severely floxed by CIPROFLOXACINE antibiotic and all symptoms now also flared, especually severe insomnia and some other neurological stuff. I would appreciate any help🙏","I was a public health Dr during Covid. I chose this and knew the risks. It sucks that my profession is completely decimated and vilified, and that we are the forgotten people of long Covid. I don't know if there's anything I would do or could not do for this because I got covid so many times that there's nothing that I could have done to prevent it. I did follow all the precautions and more. It wasn't until the mask mandate was lifted that I started getting covid on a routine basis. My life is essentially over now but I still think I would have done it over again because I saved a lot of lives." +irr-pilot-114,covidlonghaulers,2026-03-12,comment,,"[Parent post: Dream Team Peptide Stack for LC] + +Disclaimer: Not medical advice, just my personal experience for the past few weeks. + +Hola, my LC family. Thank you all for keeping me sane these past few years. This illness can be incredibly isolating and I am glad to have access to this community in what has undoubtedly been the most trying time of my life. + +Just wanted to drop in and share what’s been working for me for the past few weeks. + +From left to right: **Tirzepatide, Thymosin Alpha 1, TB-500, KPV, MOTS-C, SS-31, NAD+, GHK-Cu, BPC-157, and Epithalon.** + +Tirzepatide has definitely been a game changer. I think it has improved my mitochondrial function and lowered inflammation which is allowing everything else in my protocol to work better. + +If there is enough interest here, I can elaborate further on what my rationale has been for using these peptides, and the specific protocol I am following. I will also be posting about all the supplements, medications, and other treatments I have tried. + +My condition has improved so drastically that I have been going on 90 minute bike rides without crashing. In fact, I went on two such rides in a 12-hour window today. Brain fog has mostly elevated, and I feel hopeful for the future again. + +At one point, I was bedridden for a couple of months so it feels like I am coming back from the dead. + +Anyway, hope this information helps somebody here. Don’t hesitate to DM if you have questions. + +Wishing everyone peace and great health. Hang in there! 💪 + +--- + +[Upstream reply] +I’m taking bpc157 and tb500 right now. I’m one week in and it’s making me feel like shit. Hoping that it’s short term pain for long term gain!","Hope you feel better soon. I have not been experiencing any adverse effects taking the peptides. In my experience, when the baseline inflammation is high, things only work in the short term or have outright adverse reactions. So dousing that inflammation first would make sense to me." +irr-pilot-115,covidlonghaulers,2026-04-02,comment,,"[Parent post: Recovered, AMA] + +I have posted extensively about my long covid journey over the last 4 years. +The short version is: + + +\- PEM +\- Autoimmune disease, luckily proven without any doubt, that's why docs took me seriously (it also resolved now) +\- And a lot of the weird shit (u're well aware, the kind of symptoms that doctors won't take seriously) + +I haven't been on Reddit for a year. +But I remembered that I promised to myself, when I was at my low point 3 years ago, that I'd come back occasionally to answer questions and white pill the community. + + +Although I am vary, because the last time I did that, just a month later symptoms came back for a few months. Hope I don't jinx it again this time. + + +Anyway ... + +I don't have the answers, unfortunately nobody does. +And I won't make the mistake to attribute my positive outcome with aynthing particular I've done, that'd be dishonest. + +But I did try a lot. + +So here I am. AMA. + +--- + +[Upstream reply] +Veeeeeeeery happy for you! Thank you for your post! +My questions are +What symptoms you had? +Meds? +Diet? + +Thank you! and Blessings","PEM, brainfog, autoimmune uveitis, allergic / MCAS reactions on skin and digestion, GI symptoms, very bad silent reflux and a constant globus feeling in my throat. + +I did try plasmapheresis, helped short term. +I never took any medicine beyond antihistamines, although I was prescribed meds like beta blockers, some other heart meds and mestione + +Diet is interesting. +I will get torched for this here, but a strict carnivore diet has helped me tremendously. + +I basically only ate meat for 9 months, it cured my brainfog and some GI problems. +Keto might have a similar effect. + +In terms of supplements I have tried all, the expensive exotic ones never did anything. +What did work was + +\- NAC +\- Glycine +\- Magnesium +\- Taurine +\- B1" +irr-pilot-116,covidlonghaulers,2026-04-06,comment,,"[Upstream reply] +My doctor refills my hydroxyzine whenever I ask. No questions asked. + +--- + +[Upstream reply] +I got a three month prescription from the psychiatrist that said it’s long covid after I asked for the fluoxetine. I got one extension for the fluoxetine from the pharmacist and hydroxyzine the 4 months start to now has been pharmacist filled. They both help my reactions. Allergist even gave me an EpiPen prescription, but it’s difficult for me to see if he’s going to say something like “the drugs aren’t working because your opinion on what you have isn’t changing”. I was kind of hoping the pharmacist would keep the refills going for me because I don’t want to go to the same doctor again, but I don’t know if they keep it going after the next refill","Claratin, atarax, Pepcid, + +H1 & H2 antihistamines. + +They’ve have proven to be the most effective for me. YMMV. + + +I’ve also been diagnosed with mcas." +irr-pilot-117,covidlonghaulers,2026-03-12,comment,,"[Parent post: Adrenaline rushes at night] + +Absolutely one of my worst symptoms, it's been happening for years now. I just thought it was PTSD and thought it was normal. It's finally starting to bite me in the ass. Was triggered in 2021? After a second covid infection and ptsd. Got unbearable in 2023 after I got a job and another infection and went through a manic episode for a few months. Every single night since then. Been an absolutely hellish amount of time to wait to fix this but I've been neglected for a while to convince myself I'm fine. I'm being tested for sleep apnea very soon, but it doesn't feel like sleep apnea, just dysautonomia spikes of some kind. I also developed insulin resistance last year, could it be that? I have signs of mcas, my doctor thinks I have it, but I don't have hives just like anything else regarding it lol. I've tried medications and they don't fix them. I wake up every single night multiple times and never feel rested whatsoever. There's more info I can add but I'm feeling foggy so if you have any more questions pls let me know.","I’ve been taking antihistamines before bed and they at least knock me out. Perhaps they are making my similar type of episodes not as severe, at least I’m waking up less. I’ve been dealing with the same thing for years, I very sorry and understand" +irr-pilot-118,covidlonghaulers,2026-03-13,comment,,"[Parent post: You are so brave] + +I wanted to take a minute to tell everyone how brave I think they are. I see your posts about trying new medications and therapies and fighting every day/night. I wish I was as brave as some of you guys, but my anxiety and medication specific trauma is so bad that I’m terrified to try new medications. I know I have to try, especially now, but the fear of horrific side effects is strong. You guys are truly warriors fighting for your life and that means something.","Thank you, but you know I think many of us are scared. And it's absolutely normal. We are navigating all of this on our own. Doctors are clueless (when they're not straight harmful and insulting). We're on our own. + +Before trying LDN, I waited 3 months with the bottle next to my bed. I was terrified. Same for other things I tried. It would be strange not to be scared imo." +irr-pilot-119,covidlonghaulers,2026-03-16,comment,,"[Upstream reply] +There is still hope, don't give up. Have you seen any doctors yet? + +--- + +[Upstream reply] +Dozens of. My Trajectory seems atypical. +11/2022 first lc symptômes, 9 monthes after first infection 03/2022 (very very mild). +Dizzyness, nerve tingling at thr beginning only thzt, 0 effort intolérance. Was doing lots of sport . Lost time to rule out multiple sclérosis. +First crash i think 07/23, did not understand , exhaustion,only time i had that, i have 0 fatigue. +Recovered Quick. Some vagal Malaises night (pem). Still was not diagnosed. +Then rémission 4 monthes 01/24 till 04/24, then sama, crazy allergy, asthme, now dissapeaed then first muscle cramps and weaknesses 05/24, was diagnosed sama, lost time to rule out als / myopathy. Was better under aerius then worse, stopped, again rémission was feeling say 70% normal. Made one MAJOR mistake, started sport again, i cycles one hour 12/24, 10 minutes 100% on a climb i crashed very bad on right leg, was dead (weakness). Thos was my furst crash. +I was diagnosed lc after, very atypical only leg weakness, 0 fatigue or cognitive, 2025 i spiraled down with severe crashes 04 , 07 and 02/2026. I pace very strict since 04/25 but baseline extension lead to crashes because of that right leg imo. Now both legs are extrême weak. I was never so low,,500 steps are though , rest to get out of this last crash. For me every crash is à disaster, lasts weeks or monthes and leaves me by 50% as i was before (i loose 95% in crash, climbs slowly by pacing and crashes ahain by 50% where i crashed before). +Search for new stratégies, help or advices more than welcome","That sounds terrible. You could try contacting the clinic that helped me: [https://cvsmemc.nl/wordpress/?page\_id=14](https://cvsmemc.nl/wordpress/?page_id=14) + +They do take a payment of \~1000 EUR and I am not sure if they take patients outside Netherlands, but I'd say it's worth asking. They speak English and their entire treatment process in conducted online. + + +Good luck!" +irr-pilot-120,covidlonghaulers,2026-03-12,comment,,"[Parent post: What else can I do to get better ? What can I try that I haven’t ? Just mental illness ?] + +I’m a 31m and I believe I have long covid. I am undiagnosed. However there is a possibility it could just be major depression with Brain fog somehow and I’m psyching myself out. + +Last doctors appointment at the Long Covid clinic I was asked questions and they said it seems to be long covid.. but that isn’t a diagnosis. + +I noticed changes with my mood first. Extreme anxiety and panic attacks… with a lot of paranoid thoughts that I wasn’t used to. Became really monotone and depressed. After maybe 2 years of trying to solve this issue and thinking it was depression, I started to get bad brain fog and fatigue. My symptoms started in 2020. + +I was working full time and going to school up until onset of symptoms… slowly I lost the ability to work efficiently without over stressing my brain. Quit work in late 2024 and applied for disability. + +I kinda don’t know honestly what’s wrong with me I just know I have bad mood, unrestful sleep, brain fog and fatigue. lDN has helped significantly and I’m no doctor but it must mean it’s helping some sort of inflammation. + +All my tests come back good except for low vitamin d ( that won’t come up with supplementing) and high sedimentation rate. Uveitis in right eye which my eye doc said I could have something autoimmune going on. + +Other than me being on ldn have any of you had other treatments that helped ? Do I still have room for improvement on ldn ? When I taper up I get really tired so I go back to original dose (3mg) + +I am just very curious on what else I can do to get better… I’m not mobile at all and hardly get any movement mainly sitting, sitting up a lot now since ldn.","Not intended ; forgot to add that I also have documented memory decline as well.. + +Cognitive fatigue is what I call it idk if it’s a thing but my mental processes are a bit slower… takes me some time to remember things… I’m ADD so this has always been bad but my ADD is now multiplied ALOT." +irr-pilot-121,covidlonghaulers,2026-03-24,comment,,"[Upstream reply] +Do you have histamine issues? When my histamine is high (due to food and some smells) i get: insomnia, electric shocks in my brain, chest vibrations, waking up every 5 minutes etc. 😔 + +--- + +[Upstream reply] +I think that’s the issue, we’re at the same boat and it’s so scary? Anything that helped you?","Hydroxyzine 25 mg or Loratadine 10mg works for me. (I used to take 2 pills a day because my insomnia, fatigue and neurological symptoms were severe. Now i take one pill a week.) + +I took melatonin tablets when i was desperate for sleep. They saved me many times. But my country banned them on June 2025. 😭 + +Low histamine diet helps. But it also drives me crazy because it is so restrictive." +irr-pilot-122,covidlonghaulers,2026-03-12,comment,,"[Parent post: Has increasing iron helped you?] + +Seeing my doctor in a few weeks, just got recent blood work back on iron, ferritin and saturation. They’re all within “normal” range, but I’ve read enough to know that can be deceptive. I’ve never really had blood results explained beyond “yeah they’re normal range and fine” + +But my new PCP knows I’ve been struggling with long covid along with other health issues (possibly connected to LC), so I was wondering about maybe asking for iron supplement, or I’ve read about doing iron infusions. Just not sure if it’s worth pursuing with her. + +For my blood work in June 2025 my ferritin was 38, RBC iron was 31, Hemoglobin was 15.6 an Hemotcrit was 47.6 (those last two show just slightly above normal level). My PCP at the time said that living at higher altitudes causes those to elevate and to just ignore them. + +This time (March 11th) I did a different test (not a CBC) and ferritin is 32, saturation 23%, total iron is 70. + +I have a different PCP now, and she’s pretty good at really listening to concerns and not just fobbing me off in that “stop doing your own research, I know best don’t question it way” that I’ve experienced with previous doctors. Even so, I have a lot of medical trauma and get very bad anxiety with doctors so speaking up and asking for things is very difficult. So just trying to gauge if it’s worth pursuing based on others experience. + +\*NOT SEEKING MEDICAL ADVICE, just experiences about if this avenue is worth pursuing with my doctor\*",No idea how helpful this will be but my iron levels were low after I was first diagnosed with LC–I can’t remember numbers for anything (this was at some point in 2021) but my iron itself was low enough that I was prescribed ferrous fumarate. I was on it for like 3 years and my iron levels did go back to “normal” but I saw no benefit from it. I had hoped it would help in some way but yeah…it ended up being another dead end for me. +irr-pilot-123,covidlonghaulers,2026-04-10,comment,,"[Upstream reply] +Great to hear. Thanks! + +--- + +[Upstream reply] +I wonder what dosage some were taking who didn't consider it helpful? I take 2 in the morning and 2 in the evening natto. Less than that and my brain fog returns and it takes weeks to improve again.","Yes that’s a good point. + +I’d guess many people just casually take the dose on the bottle for a couple days and see if there’s obvious changes. If not it would be easy to just write it off as “not working.” + +Sometimes it takes a while for effects to kick in. + +Sometimes the right dose is different. + +Sometimes the improvements are subtle and you wouldn’t notice them without a tracking process." +irr-pilot-124,covidlonghaulers,2026-03-12,comment,,[Parent post: Taurine supplementation as a therapeutic strategy for cellular senescence and chronic inflammation in long COVID: a systematic review and meta-analysis - PubMed],I started to have these reactions which manifests as restlessness and agitation. TAURINE is one of the rare things that help +irr-pilot-125,covidlonghaulers,2026-03-12,comment,,"[Parent post: Doctors visit] + +So ive been dealing with LC for about 2.5 years now or since December 2023. + +Today I visited a new GP doctor. While explaining my old symptoms and how they were flaring up he kept recommending a phyciatrist and then medication for depression. It felt very gaslit or like hes pushing for me towards that route. + +Either hes pushing for his kickback for prescribing that medication or im not sure what but lately ive been getting the gasliting more and more from friends and less from family. + +Asked him if there's a long covid specialist he said there is no such thing. + +--- + +[Upstream reply] +I was not happy with the order of my specialist appointments when I finally got a new family doctor. + +I went in to get help in case I fall into a severe depression from the issues I've been dealing with before I got a doctor. They said they couldn't do much, and they said they couldn't see my symptoms even though I took pictures of two of the issues on my phone for reference while in the office. Left without any help provided. + +2nd time I saw a psychiatrist was for an opinion from them by my family doctor. Man was out of it to begin with and said it's somatoform. My family doctor, after showing him multiple blood tests, multiple issues on my brain MRI, hormone issues, lung function test that said I had some milder issues where I'd benefit from inhalers, my current use of several supplements and antihistamines to manage symptoms ended up agreeing with the psychiatrist and said his opinion was that it's somatoform. When I went into to see him before that visit, he said that somatoform is the diagnosis but the symptoms are real... I was operating under the assumption that somatoform meant symptoms worsened by chemical changes associated with psychiatric disorders. + +3rd time I saw one at the same place I went to the first time, I was expecting it to be a joke, but I went anyways because I wanted to switch from escitalopram which was helping me at 5 mg with stress related worsening of symptoms to fluoxetine because at 10 mg of escitalopram, I was having bad reactions. This time, to my surprise, they gave me the long covid opinion in writing. Very grateful for this doctor. The fluoxetine has helped me a lot more as well at a higher dose. + +The thing I would have done differently was pushed the 2nd psychiatry appointment to after the more important tests. Not saying a psychiatry opinion is useless, but when it's not solely a psychiatric matter, it kind of made getting other specialist referrals a lot more difficult.",">*The fluoxetine has helped me a lot more as well at a higher dose than the starting dose (on 20 mg now).* + +Some SSRIs have anti-inflammatory properties, fluoxetine and fluvoxamine among them: + +[https://www.reddit.com/r/covidlonghaulers/comments/1q7vt9o/comment/o8orfa5/?context=3](https://www.reddit.com/r/covidlonghaulers/comments/1q7vt9o/comment/o8orfa5/?context=3)" +irr-pilot-126,covidlonghaulers,2026-03-15,comment,,"[Parent post: My MCAS is gone] + +I’ve waited a few weeks to post this to make sure, but my MCAS is completely gone. I don’t take anti-histamines anymore, I used to need them daily. + +Further, no confirmation on this yet, still (carefully) testing, but I have post/long covid with ME/CFS & have not had any PEM in a while. I used to wake up, do a bit of housework and I’d already get the PEM headache, but now either my limit has increased or (again still testing) the removal of my MCAS is making me rapidly recover. + +I’d say the top three things that have brought this change are: +Baikal Skullcap (cleanses the system, start slow as herxheimer reactions will happen) +BioFlora- once the skullcap has killed all the bad bacteria, start adding good bacteria to promote gut health +ZEOLITE/Clinopliolite: This will draw out all the heavy metals and other tiny impurities. This is BADLY needed. Please do not skip this step. + +Supportive supplements: +-glutathione (supports your bodies detox) +-nattokinase and serraptokinase(will bring down all those nasty clots all over the body- recommend first detoxing a bit before releasing the clots) +-Astaxanthin(helps supportive mitochondria) +-algae oil(omega 3 if lacking) +-schisandra berry tincture (anti viral and anti oxidant) + +diet now: mostly fruits, nuts, veggies, pasta, rice, potatoes, some dairy & eggs (if you’re still struggling with reactions pick what works best for you, for me it was rice, certain fruit like blueberries, oats etc) + +Don’t want to overestimate anything but would be awesome if I can give another update soon about my PEM progress~",What herxheimer reactions did you experience from skullcap? How long did you use skullcap for until you started the other supplements? What time of day were you taking skullcap? +irr-pilot-127,covidlonghaulers,2026-03-15,comment,,"[Parent post: Could resting too much actually make you worse?] + +About 7 months ago I didn’t really know I had long COVID yet, so I was still trying to keep up with normal life even though I was crashing a lot. Since realizing what’s going on, I’ve drastically reduced my activity, mostly staying at home, short walks, lots of rest. + +But it almost feels like I’ve slowly been getting worse since reducing activity so much. + +Is it possible that reducing activity too much can make symptoms worse over time (deconditioning etc.)? Or is it generally better to keep resting until you improve? + +If resting too much isn’t good how can I start introducing activity again? + +My main symptoms are head pressure/headaches, neck stiffness, jaw pain, ear pressure/tinnitus, sore throat, fatigue and crash episodes.","I spent 17 months in a dark quiet room 95% bedridden. 14 of those months I spent in rolling PEM. If you have ME/CFS, the answer to your question is no. Last year I significantly improved. Last May, I started my own sub. I also went back to working for myself part-time from home. Last October, I started doing some health/wellness coaching helping people navigating the challenges of long COVID. I have a lot of help. I do a lot of work from my bed. I'm working full-time now. + +If you don't experience PEM, your trajectory could he very different." +irr-pilot-128,covidlonghaulers,2026-03-20,comment,,"[Upstream reply] +Boluoke brand lumbrokinase is much, much better for microclots. + +--- + +[Upstream reply] +I'm familiar with that specific brand and it's strength. From what I've read, it might be too strong for some people, so it is suggested to start with the weaker natto first. And then if that doesn't work, then try the specific product you are mentioning. + +I'm still considering trying your product first, as natto may cause an issue with my potential mild mcas. + +Thank you!","Yeah, there is a risk of a Herx with any of these. I’m not aware of any recommendations, just have awareness. Can start with 1 tablet every other day instead of 2 a day. Then go up as you tolerate. There are so many worthless supplements and it is hard to know what you’re getting. I prefer to use a tested/ trusted brand. + +I was on the full dose of 2 a day for about 2 weeks when my head pressure headache started to ease for the 1st time in years. Not fully recovered by any means, but it sure is nice to have some relief from something." +irr-pilot-129,covidlonghaulers,2026-03-18,comment,,"[Parent post: Coathanger headaches] + +So, I’m noticing a pattern with the coat hanger headaches as they went away and returned over the weekend. I’ve had one every single day, as it never really goes away, I just get relief when I vape mm the/cbd. I wake up with it, get relief, then it gets bad again at bedtime. The pattern is that it happens every March, they return. Is anyone out there dealing with these “headaches” and gotten any relief? What have you tried? Do you also notice a pattern? + +My neck gets so tight I can literally hear it crack and pop when I stretch it on both sides… temporary relief until it tightens up again. I’m also wondering if that’s what is happening… the muscles/nerves/something tightening up like crazy, but why? + +I’ve seen it asked so many times “what’s your worst symptom”? And as badly as I hate having a partially paralyzed diaphragm, these headaches are the absolute worst symptom, ever. I can handle pretty much all the other 178 symptoms I have, but not these. + +Thanks in advance for any input!",I would check your vitamins especially B12 and iron. Those two are notorious for causing neck stiffness and what not. +irr-pilot-130,covidlonghaulers,2026-04-09,comment,,"[Parent post: I cant stop breaking down. Dislocated my leg on top of LC] + +I cant stop having crying spells 3 or more times a month. I try so hard to keep my emotions in check but some days I just cant help myself and I just break down crying wherever I am. + + I dislocated my knee a few weeks back and I got surgery for it. After the surgery however the doctor told me that he was unable to complete everything for the surgery and now I have to have a second surgery done in a few months. So I am doing all this physical therapy and what not just to do it all again. All the slow progress I am making to walk again is all going to go back to 0 again and I will have to go through the pain again. They also tell me I might just never recover all the feeling in my leg. + +And of course I am still dealing with neuro long covid on top of all of this. I am still dizzy. I still have head pressure / brain fog / drunk feeling- whatever you wanna call it. I have pots too. + +And I have been trying so hard to stick to a good regiment. Yet I keep falling off of it and I havent made ANY progress NONE in 2 and a half horrible years. I feel so depressed and just so tired. + +I had to type an email to my advisor telling them I have no idea if ill be able to continue my masters degree and research because of the long covid and the second surgery and recovery ill have to go through which will put me back another semester. I have been through so many different doctors and none of them have been helpful except for ruling out things. + +Right before I dislocated my knee I had my regiment down again and I was feeling hopeful that maybe that I might start making an upward trend. This injury was seriously the last thing I needed. I just feel awful. I get dizzy when I would walk but now I cant even walk. Its still hard to think and Ill even get spaced out or have that stoned or drunken feeling increased in lecture when I would go. So I just feel like what even am I? Im not brains. Im not bronze. I just am this thing that is just existing to exist. Like idk im just losing myself and it feels terrible. + +My birthday is next month and im dreading it. Because I made a promise to my self 5 years ago that when I turn 25 I would be in the best shape possible or be as healthy as possible because I have always struggled with losing weight and such. I was on my way at 22 and I was in the best shape of my life and now I lost all of that. And on top of that I am in the worst state of my life. And now, when I turn 25 I will have failed and not only have failed but have regressed to a worse state imaginable. I just want some progress I just want to see myself slowly getting better but I have not seen that and I just cant take it. Im dating the most wonderful person and yet I cant do shit for them now. Not with my long covid. Not with my leg. I feel so utterly useless. I just want hope I want to see any improvement. I cant stop crying I cant I am just so so so broken. I dont know what else this universe wants from me. + +If anyone has any supplements or medications that have helped with the brain fog / drunk and dizziness or head pressure / burning sensation, I would appreciate anyone telling me what helped. I have been looking for things on this subreddit and elsewhere but I just am so tired of looking. I would greatly appreciate it. Thank you. + +--- + +[Upstream reply] +Have a look at r/Longcovidgutdysbiosis if you haven’t yet. There are gut microbiome tests that can help you target gut health with food and supplement recommendations. Your gut is important for immune system, serotonin, and energy.",I had a gut test done and my microbiome was super great but it also wasn’t awful so I’m not sure how to interpret it. I believe I made a post over there a while ago. I had a sibo test done and it was negative. I used to drink kefir before my surgery (my surgery threw off my whole routine). So I’ll try to get back to drinking more fermented stuff. Thank you +irr-pilot-131,covidlonghaulers,2026-04-06,comment,,"[Upstream reply] +How did you learn how to pace with your PEM? I am trying to figure this out. +I have a PT but he isn’t very familiar with PEM, more so POTS and TBI/other neuro injuries. I think he understands some of it but has never used the language you did (like “sentinel symptoms”). + +I’d love to understand my PEM better so I can pace myself, I don’t think I have a good grasp of it at all. + +--- + +[Upstream reply] +I had an 18 week ""how to long Covid"" with my doctor. I am spectacularly lucky to have him and his clinic. +Here's a cheat sheet on pacing: https://world.physio/sites/default/files/2021-06/WPTD2021-InfoSheet4-Pacing-Final-A4-v1a.pdf + +And here is a sample activity tracker: https://world.physio/sites/default/files/2021-06/WPTD2021-ActivityTracker-Final-v1.pdf + +Once you get your head around these, start by filling out the activity tracker. You can also make your own on paper (I find easier to work with, personally) or a Google worksheet. + +Every day when you get up, rate your sleep out of 10 and mark down how much energy you think you have for the day. Look back to the day before and assign the day a Green dot for within limits, tell for pushing limits and a red one for crashing/PEM. If you're in yellow or red, note down any symptoms and rate from 1-10. Be as thorough as possible. +As you go (at first, later you can do at night) mark down anything that uses energy and mark it with any number of the 5 types of stress: cognitive, physical, social, environmental, or emotional. For instance, a phone call with a good friend might be cognitive, physical (if you have to sit up or hold the phone in a way that tires you - assume everything does at the start) and social and probably emotional. Write down the amount of time (try to keep it short in the beginning, it's easy to get PEM testing whether you are going to get PEM, lol. +You can add a night time assessment of how much energy you feel like you actually used, with the amount of activity as a guide. If you used 5 hours all in between eating, necessary cleaning, listening to an audiobook or soothing meditation or Yoga Nidra recording, all of it. Then assess yourself 1-10 how accurate your estimate from the morning was. + +Then get up and do it again! After a couple of weeks you should have enough data to be able to see patterns like too much energy usage one day that resulted in lowered energy and feeling worse the next day or any day after that. Activities usage of energyand perception of energy available will sharpen quickly. You'll eventually notice that you have certain symptoms when you're getting too close to the ceiling or have gone past it - mine is chest wall pain. When I feel that I go straight to bed in a dim, quiet room and stay horizontal for longer than I think I need. + +Add any supplements or medication your are taking as well. + +If you haven't trialled antihistamines, think hard about it. You can use Claritin and Pepcid, H1 and H2 inhibitors respectively (the H is for histamine). My doctor has a protocol for that I'll copy out below. If you've ever used a Claritin type AH or Pepcid before you can just combine them without having to see if you react poorly to them. + +Definitely get yourself hooked up with LDN. In my case a huge part of the extreme misery I was in early on was from not sleeping. Being in constant fight or flight or sympathetic nervous system activation would wake me up multiple times a night. I got a sleep study and found I had developed sleep apnea. Changing the incline of my bed (I couldn't tolerate a CPAP) helped. I tracked all this with my Oura ring. I'd also developed terrible heartburn, which the Pepcid helps with. + +For sleep my doctor prescribed Trazodone, for anti inflammation and nightmares Clonodine and after I onboarded those two, low dose Naltrexone. I still get PEM but if I'm careful about pacing my quality of life is okay. The first ten months were absolute torture. The name of the game is symptom treatment, since we don't have definitive knowledge of what exactly is causing these effects. Some people have some success with supplements that are supposed to boost mitochondrial production - the mitochondria is the powerhouse of the cell and ours aren't working enough, aren't getting enough oxygen or our brains are giving them error laden orders. Coenzyme Q10 and Quercetin are popular to try. + +There are immune system issues where Neutrophil Extracellular Traps (NETs) develop from the immune cell Neutrophil, in fighting the virus, explodes and casts a trap around the virus or virus fragments, forming microclots. Unfortunately, these microclots are not vulnerable to regular clot busting meds like blood thinners because the NET itself is protecting them. Theres a complicated process that renders these impossible to nudge so far and could be the reason why our cells aren't getting enough oxygen, brain cells included, plus general inflammation + This is a simplistic explanation that may be wrong and exploration of NETs is in its infancy although Neutrophils have been known for a long time. These microclots are unique to Covid. Some people try nattokinase or serrokinase which can dissolve arterial plaque but the level needed, dangers of and therepeutic effects aren't really known yet. + +I will also post a twice daily self lymph massage instructions which helped me a lot - inflammation swells the area around lymph nodes so the dead cells and cell fragments and waste products aren't cleared automatically. This self massage moves them manually to the liver and kidneys. + + + + +Step 1: put your fingers behind an ear and stroke gently downward to where the neck joins with the shoulder. Do that up and down for 30-60 seconds. Then gently pat the same area for 30-60. Then do the other side. + +Step 2: where the chest meets the underarm, same technique, and the other side. + +Step 3: the top of the solar plexus to about 6 inches below, then patting. + +Step 4: up and down behind the knees, then the patting. + +Step 5: put your thumbs on the occipital bumps on the back of your head, stretch a finger and place it onto your temples. Push apart the occipital bones with your thumbs while pressing upwards with your fingers. 15-20 seconds is fine, I usually do it 3 or 4 times. + +All that lymph should now drain into your liver and kidneys where they'll be flushed away. I usually feel extremely relaxed after but you want to be careful, for some this can trigger an ME/CFS response. + +Do that twice a day. You can look up other lymph nodes but my physio is very firm on doing the big 4 pairs first and always. + +Go to https://bc-clmf.org/resources, choose ""Medication Handouts"" and you'll see all the meds my Doctor recommends at this time. Find the one that says ""MCAS Diagnosis"" for instructions on how to test for Mast Cell Activation Disorder or what my physio and I call pseudo MCAS, where inflammation squeezes Mast Cells and they shoot histamine all over the place at weird times and make us miserable. + +Feel free to digest this and come back for questions any time.",Ps. I’m guessing from this clinic info that you live in BC? I’ve alwayssssssss dreamed of living there 😍 +irr-pilot-132,covidlonghaulers,2026-03-30,comment,,"[Parent post: Saving a stray kitten in an immunocompromised household?] + +Hey yall. My boyfriend is a longhauler and also has ME/CFS, MCAS, POTS, and probably more. He's relatively mild at the moment- he used to be severe, but now he is able to go in person to work and school and we go out to concerts and do fun things (all masked of course). We do not currently live together, but we live only 10-15 minutes apart and stay over at each other's homes very often. I am not immunocompromised. + +Last Tuesday, I found a stray kitten on the freeway. I saved her and have been taking care of her for the past week, and I've absolutely fallen in love with her. I want to keep her. However, my boyfriend is worried that having a cat will put his health at risk. So this post goes out to all the cat owners- please provide input if you can! + +I've spoken to 2 vets already and done a bunch of research online. The kitten seems to be in perfect health and has no symptoms of health issues or diseases. However, she is only 6 weeks old and is therefor too young to test for parasites or get vaccinated. She needs to be 8 weeks old for that. It seems that the main thing to be concerned with right now is the possibility of her having a parasite. Like I said, she shows no symptoms of this, but of course I want to be extra cautious. I have her quarantined in a huge plastic bin that's set up like her own little apartment for now (also because she has fleas; she's going on flea medication in a week once she reached 1.5 pounds). + +I know that litter boxes can cause allergies and respiratory issues, so I'm trying to research the most allergen-friendly litter and get an enclosed box to contain any particles. I'll have an air purifier by the litter box too. + +Anyone else been through this? Were you concerned about possible health risks? How did you handle that?","I foster kittens for our local shelter. I have LC since 2020. Sometimes it is too much for me but taking care of living creatures also gives me much joy. I would not want to miss out on that. I am very careful, I use a lot of hand sanitizer and I use gloves when cleaning litter boxes. (Or ask others to do it 😉😁). +Until now I have not noticed any negative impact on my health because of the kittens." +irr-pilot-133,covidlonghaulers,2026-03-20,comment,,"[Parent post: What supplements made the cut for you?] + +If you’re like me, you’ve had Long Covid (overlapping with ME symptoms including PEM) and your body has been a science experiment. You’ve tried all kinds of supplements over that time. Which ones made the cut for you? What’s the stack you kept? Mine is: + +Oxaloacetate + +NAC + +L Cittruline + +Rhodiola Rosea + +Acetyl L Carnitine + +D-Ribose + +NMN + +CBD Oil + +Magnesium Threonate","In descending order of helpfulness, Pycnogenol, lactoferrin (I was iron deficient as a caveat), magnesium glycinate, ubiquinol, NAC (didn’t feel it at low doses though). + +Things other people listed that didn’t help me include, nmn, creatine, taurine. Quercetin probably helped with MCAS but prolonged use can make you iron deficient." +irr-pilot-134,covidlonghaulers,2026-03-12,comment,,"[Parent post: Fluvoxamine vs Glp-1s] + +Hi, I was able to get a prescription for fluvoxamine and it has helped dramatically with the neuro inflammation for which I’m grateful. + +I am more moderate than mild CFS type with some POTS, MCAs, histamine intolerance, gluten intolerance, chronic mild headaches and head and neck stiffness, brain fog, sensory sensitivity, LC induced hyperthyroidism. The fluvoxamine has largely helped with the inflammation and mood but nothing else. + +In addition to fluvoxamine, I also take LDN, valacyclovir, methamazole (hyperthyroidism), as well as various supplements: magnesium threonate, methylated vit b, NAC, glycine, ALA. The only meds/supps I can see a difference with are fluvoxamine, LDN, magnesium threonate, vit b. + +Looking to change up my medications. I’m wondering if glp 1s would be better than fluvoxamine? Anyone have any information about the qualities and usefulness to compare them? Price has largely been a factor in me choosing fluvoxamine over glp-1s. Also open to suggestions to change up my med stack. Thanks!",GLP 1 messed me up bad I felt like I was dieing while falling into a coma. Plus I gained weight on the peptide which doesn’t make sense. ( water weight ofcourse. +irr-pilot-135,covidlonghaulers,2026-03-22,post,So went out last Saturday to enjoy St Patrick's day.,,"Was down for 2 days on Monday and Tuesday with CFS on schedule with PEM and the 48 hour baseline. Slept til 4pm for the week. Mustered the energy to go out last night. Drinks a weed from 9pm to midnight. Found an afters and said what the hell. Stayed out to 7am with the help of stims. Cocaine and Mdma. Old school raver. 58. Feel great now. Took 1000mg of Magnesium, and 10mg Valium. Chilling. Worried about the repercussions of tonight. I'll post what happens. I just couldn't sit and feel nothing anymore." +irr-pilot-136,covidlonghaulers,2026-03-24,comment,,"[Parent post: Recovery Story So Far] + +**My Recovery Story** + I am in my late 30’s and I am a female.  I consider myself about 65-70% recovered. I was never completely housebound, but very close at one time. To be honest, I gaslighted myself for a long time. I convinced myself that what I was experiencing was the fatigue of motherhood, psychological and “not that bad.”  If I had not believed in some way that I was “weak” I would have been in bed daily and definitely housebound. I continued to parent and  work through unbearable pain and neurological symptoms. I would never ever EVER want someone to feel the way I did for so long. My biggest regret is not believing my own pain sooner. It took me three years to accept that I was really sick and that if providers did not believe me or found me credible, then I had to find a provider that would. +What ails me these days is significantly reduced, while I am not yet able to return to the life I knew. I became a mom  for the first and last time while unknowingly harboring severe endometriosis and Long Covid. It has been a cruel and devastating chapter of my life.  What holds me back from , let's say 100% recovered, is I still cannot play soccer again or run long distances without consequences(increased fatigue, soreness that feels like being poisoned, and tachycardia). I am still very sensitive to weather changes, cold intolerance, and lower energy. And it hasn't been enough time feeling the 70% recovered for me to be convinced that my latest theory is correct. +I contracted Covid19 in December 2020. I recovered from symptoms in about two weeks. A monthish later I received the vaccine. My illness experience started with chronic sinus infections but those were remedied by a deviated septum surgery. I never got a sinus infection again. +I then had a bowel obstruction one month after the surgery. After a long course of antibiotics and narcotics, I attributed the lowered motility and bowel obstruction to the drugs and/or complications from a previous abdominal gunshot wound over a decade prior. +Unfortunately I  developed severe constipation that has troubled me until recently. Which leads me to my latest conclusion, the gut is the opening for Long Covid for me. It is where my journey  really began and hopefully will end. More on that later. + +**Here is my symptom list:** +Constipation(moderate to severe, varying types) +Vascular Compression syndromes +Bloating +Cramping +Air hunger +Skin legions +Cold extremities +Weak Legs +Headaches +Stiff neck +Pelvic Pain +Back pain +Just severe pain from waist down +Urinary discomfort +Hemmoroids +Brain fog +Cognitive impairment(lowered executive function, fatigue, reduced problem solving ability, reduced processing speed, reduced auditory processing ability, depresonalization/derealization, loss of inner dialogue,loss of skills/knowledge, inability to communicate, word finding issues, short term memory dysfunction, poor recall, overstimulated by mundane things like eye contact/light/weather changes/screens) +Unrefreshing sleep +Insomnia/ Hypersomnia +Unstable blood pressure +Dizziness +Tachycardia +Reactions to food, alcohol,  temperatures, morphine and other medications +Abdominal pain +Body pain +Lowered hormone profile +Iron deficiency +Stretchy veins +Hair loss +Depression +Rage +Ahdoneia +Obsessive thinking +Unintended weight loss +Swollen lymph nodes +SIBO/IMO +Endometriosis(despite a lack of history of painful periods, none observed on imaging and no pelvic pain prior to Covid) +Exercise intolerance +All kinds, types of fatigue +Wired, but tired +Post exertional malaise primarily from cognitive functioning +Reduced cognitive stamina +Vision changes +Inability to focus eyes +Gut dysbiosis + + +And more. + +**Here is my timeline of symptoms:** + +**December 2020**\- Infected +**January-May 2021**\- Chronic Sinus Infections, +Anxiety amping up , I look back and notice I had reduced ability to feel soothed. +**June 2021**\- Large bowel obstruction, neg. colonoscopy +Bloating, intense GI pain after eating, increasing obsessive compulsive thinking, intense anxiety like I have never had. Leg weakness begins. +**May 2022**\- Horrible post-partum experiences. Intense mood swings, increasing pelvic pain, difficulty breathing, dizziness, pre-syncope, POTS like symptoms +**Oct 2023**\- Hospitalized for sepsis, constipation most severe, fatigue and cognitive symptoms begin to accumulate. +**2024**\- Worst year on record. So much physical therapy. Pelvic Floor therapy as well. Cognitive impairment is destroying my sense of self, my work, and my relationships. I get a psychological evaluation thinking maybe I have ADHD that I can no longer manage. Seeing my IQ be valued so low, wrecks my self-esteem. From this point, every 3-4 months I was in the ER for impaction, severe constipation and excruciating pelvic pain. +**September- December 2024**\- Diagnosed with SIBO/IMO, pelvic floor dysfunction, dyssynergic dysfunction, and slow motility. Antibiotics and prescription laxatives. +**January 2025**\- Pelvic pain intensifies, air hunger, cognitive impairment all at their worst. I lose inner dialogue, ability to make eye contact, and struggle to have social interactions outside of restricted, predictable patterns. +**February 2025**\- Lowest point. Cannot breathe sitting down, pelvic pain evokes screaming but taking opioids or NSAIDs trigger worsening cognitive symptoms. Feeling unreal, a strange sense of time, alienated and alone. Suicidal. +**March 2025**\- A doctor finally believes me and says she thinks I have POTS. In pursuing that diagnosis I learn more about chronic illness and begin tracking my symptoms to look for any patterns. A gynecologist dismisses MY DISMISSAL about endometriosis and says its time to check that “it's not a zebra.” I mentioned in the appointment , “ maybe it's the zebra but I am starting to think I have endometriosis.” +**April 2025**\- I meet with an endometriosis specialist who believes I am a candidate for laparoscopic exploratory surgery and that I have endo. +**May 2025**\- Meet Dr. Robert Redfield, tell him I am checking my iliac vein for compression as I believe its contributing to my air hunger. He agrees and confirms I have Long Covid. +**June 2025**\- Venogram confirms MayThurner Syndrome, 92.6% compressed left iliac vein. The vascular doctor does not think the stent will improve anything but my pelvic pain, not my dysautonomia or air hunger. I decided to wait after the endo surgery. +**July 2025**\- Endo excision surgery and hysterectomy. Some pain disappears completely. Most of the pelvic pain worsens. +**August 2025**\- Stented for May Thurner, left iliac. After 3 weeks of pain and mast cell  HELL, most of my pelvic pain is gone as well as 75% of my dysautonomia. +I begin Maraviroc, Rapamycin and Pepcid for cognitive dysfunction +**September 2025**\- Feeling my mind come back but have hormone dysfunction(night sweats etc). Begin HRT and feel even better. +**December 2025**\- Begin to fatigue and crash. Low mood, low ambition, losing ability to get out of bed. +**January 2026**\- Venogram confirms Nutcracker Syndrome,78% compression. +**March 2026**\- Stented for right iliac vein, 93% compression, relieves all pelvic pain(excluding GI related nerve pain), and no more breathlessness!!! +Discovered that antibiotics and iron supplements gave me my energy back, plus the highest cognitive function I’ve had since 2020. +BiomeSight(February sample) confirms that a dysbiosis exists and would respond to some tweaking. + + + +**Helpful Tests** +\-Rheumatology- all the panels ruled out autoimmune for me +\-Allergy- Ruled out full blown MCAS +\-Venogram and IVUS caught compression syndromes +\-Laproscopic Exploratory(Endo confirmation) +\-Blood work to rule out so many things + +**Here are my treatments in chronological order that were positively impactful:** +\-SIBO/IMO- Antibiotics +\-Tirzepetide(Helped some mast cell related pain/inflammation) +\-Endometriosis Excision/Hysterectomy +\-Nicotine Patch 7mg 1 x day(Temporary relief) +\-Nattokinase(Temporarily effective) +\-Bilateral Iliac Stents for May-Thurner Syndrome +\-Eliquis 5mg 2x day +\-Adderall 10mg XR +\-Antivirals and Antihistamine Regime-Marviroc 300mg 2x day, Rapamycin 1mg 1x Day, Pepcid 40mg 2xday, Ketotifen 1mg daily +\-HRT(Estrogen Patch.75mg, Testosterone cream 5mg daily, and progesterone 50mg cream daily) +\-Supplements are most effective when administered in the right order. +1) Anticoagulant, 2) Antivirals and crew(see above)(3) Vitamins and Minerals(EstherC, Vitamin C, Magnesium Glycinate 400MG and Theronate(400Mg), B2 400mg, Creatine 10mg,Choline 1200mg, Mag. Citrate 200mg, Fish Oil, Iron Bisglycinate 50Mg 2x day , B12 Hydroxocobalamin (4) Sunfiber/Gluten Free Diet/Reduced dairy/sugar + +**Specialists that were helpful** +\-Dr. Curtin, Neurogastrology, For the Sibo/IMO +\-Dr. Robert Redfield, Infectious Disease +\-Dr. Andrew Buscemi, Family Medicine +\-Dr. G at Center for Vascular Medicine, interventional cardiology +\-Dr. Audlin , gynecological surgery (Endometriosis Speciality) +\-Dr. Ericka Nichelson- Hormones, Gynecology + + + +**My dysautonomia symptoms and air hunger were 90% eliminated by the bilateral stents in my iliac vein.** The final 10% feels mast cell dysfunction related. The stents also reduced my pelvic pain, as well as the endo excision surgery. + +What has been the most stubborn to treat has been the fatigue, ongoing cognitive issues, constipation, and abdominal/pelvic pain. After 5 years of this, I was close to giving up even though I had  come so far. The Maraviroc/Rapamycin gave me back much of my social brain, language, and increased my stamina. But my body was heavy, my mood  was low, I had no energy to fuel my thinking. + +On 2/22 I submitted a sample to BiomeSight. Before that test result came back, I saw Dr. Buscemi for a UTI. He prescribed Levoquin and encouraged me to take iron supplements for my ferritin level of 41. In the past, my ferritin had been even lower at 30-33. He said that optimized levels would be nearer to 100. + +Once on the antibiotic and iron supplements, I had the best week I had in YEARS. Aside from some flank pain from Nutcracker Syndrome(renal vein compression), I had my brain almost completely back and I could get out of bed. I was motivated and my mood improved. And after five years, I had the urge to poop, without pain, without strain, and I was regular(1xday). + +Then I got my BiomeSight results back. Top suggestions for my gut? + +Antibiotics and Iron Supplements. + +It also suggested reducing fiber, wheat, dairy, yogurt, and all probiotics. Which lined up with my past experience of worsening symptoms. + +My jaw hit the floor. + +Gut dysbiosis and ferritin symptoms were causing my most stubborn symptoms? + +I am off the antibiotics now but still supplementing iron. I had no idea that iron also fed bacteria in the gut. So I will be following my gut, pun intended, for the rest of this recovery. I plan to continue supplementing iron and submitting another sample in 4-6 weeks to check on the microbiome. I am focusing on resistant starches, Sunfiber(PHGG), and avoiding wheat/gluten. I did order trybutin( prebiotic) to hopefully help stimulate more butyrate producing bacteria growth(I run low on these). + +It has helped me to use my symptoms as data throughout this process. The symptoms never lie. They may not make sense, but they are valuable and worth reconciling into a theory. When in doubt, get more data. Take the data and keep thinking, obsessing, and searching it. I must have spent thousands of hours thinking about my illness/symptoms. I kept reading and reading until some pattern would emerge that I could chase down. I heard about iliac vein compression contributing to POTS symptoms from a podcast. I chased down this lead because I knew I didn’t have an “immune/allergic profile.” I didn’t line up with MCAS and I was ruled out by rheumatology for anything autoimmune. So I figured the cause really could be vascular for me. And it was!! I knew that the microbiome was important to recovery but I avoided it until I absolutely had no choice. I wish I had worked on it earlier but it would not have helped my air hunger and pelvic pain. From my insane amount of Reddit lurking, I knew that ferritin was a tricky thing for primary care. Some levels may be “normal” but not optimized  and therefore cause significant illness. + +I really credit my recovery to living in a great area for Long Covid, my treatment team, and my stubborn obsession with recovering. I research every single day. Everyday I read about illness and the experiences of others. When I couldn’t read, I listened to podcasts in the dark. It gave me a brain trust, a collective knowledge, to reference when making treatment decisions. +Beware of the Cassandra effect. Knowing something is true and knowing intensely that something is wrong, *is not enough to be heard and understood*. I needed so much strategy, data, and written communication to be successful in our medical system. It is not fair that it is this hard, but it is the reality. My memories of mistreatment while incredibly vulnerable will haunt me forever. + +I hope this was helpful to someone somewhere. This is not the whole story, it is missing the many supplements tried, the many negative tests, the grief and loss, the identity crumbling, the lost relationships, and the spiritual rebirth I experienced. This is simply the rundown on how I recovered and feel that I will continue to do so. + +My story can also be found at Long Covid Carls on YouTube. I have no interest in promoting myself but for the more personal retelling, that’s where you can hear more. + +Many, many thanks to this community. I would be lost or dead without it. I try to give back as much as I can, hastily between parenting and running a business, but I will not stop giving back to the people that were there for me.","What were your total iron, iron saturation, and ferritin levels? I didn’t know BiomeSight recommended that anyone take iron…" +irr-pilot-137,covidlonghaulers,2026-03-24,comment,,"[Upstream reply] +You could let your doctor know what blood pressure readings you are getting at home and that your blood pressure is sometimes low. I'm not sure if the doctor was assuming 170/100 is typical for you? One or two very high readings might be atypical or anxiety. If fainting might be an issue if your blood pressure drops too low, that is something they might want to take into consideration. + +--- + +[Upstream reply] +I did record some readings for her and show them to her, but unfortunately I’m not sure if it was a bad week or what but for a whole week I had readings of 150/100. So this just supported her wanting me to start the propronal. I don’t check my BP as consistently as I should now but the readings are usually about the same and never on the normal or low end. + +Other than that, there have been two occasions during anxiety where my systolic was 170 (never 200 or higher).","I spent NYE and NY Day in the hospital because of hypertensive crisis. My BP was dangerously high. Had every test you can imagine and came back normal. I don’t have a BP problem. I have dysautonomia because of Long Covid. The root cause is in my brain. They still put me on Lisinopril and Metoprolol. I have not had any syncope episodes since!!! I monitor my BP in AM and PM. Between me taking H1 and H2 inhibitors (Zyrtec and Pepcid AC), wearing compression garments (Jellybody) and taking an ACE 2 inhibitor and a beta blocker, I have been able to tackle hypertension, syncope, tachycardia and dizziness upon changing body elevation. + +Here’s a great guide: https://www.rthm.com/pdfs/long-covid-treatment-guide.pdf" +irr-pilot-138,covidlonghaulers,2026-03-22,comment,,"[Parent post: What supplements made the cut for you?] + +If you’re like me, you’ve had Long Covid (overlapping with ME symptoms including PEM) and your body has been a science experiment. You’ve tried all kinds of supplements over that time. Which ones made the cut for you? What’s the stack you kept? Mine is: + +Oxaloacetate + +NAC + +L Cittruline + +Rhodiola Rosea + +Acetyl L Carnitine + +D-Ribose + +NMN + +CBD Oil + +Magnesium Threonate","I was in your spot trying everything last year. Ended up with meo nutrition celluvate which has the NR, quercetin and resveratrol you're already taking but in one pill. Been my main stack base for 4 months now." +irr-pilot-139,covidlonghaulers,2026-03-12,comment,,"[Parent post: Deteriorating rapidly, medicine doesn’t care] + +I’m 22f, got diagnosed with MS at 18, then a few months later caught Covid at work, which turned into long Covid and left me bedbound. These two things may have been related, I may have been rundown and had the propensity to develop long Covid since my body was already actively going through the onset of MS, but I do not believe it is “because“ of the MS in a direct way. + +Because I live in Australia, and possibly the most medically authoritarian state (NSW), I have had zero luck getting any treatment for the long Covid because the first thing they see on the page is MS, and + +Just shut down – then attribute every little thing I describe to that even when it’s not strictly related in the literature. I have been very bluntly told that long Covid does not exist, and I won’t bore you all with those stories, because I’m sure other people in Australia have told the same story many times here. In short I wanted to ask if there are any folks in Australia, and for you to share your story, either a rant or a story of triumph, anything and everything is welcome. For those in other countries, I am equally interested in learning how you found making contact with a specialist, and if you were able to get good advice or treatment from anybody. Thanks in advance.","Hey, I also have MS (+ hEDS), which in my case started after COVID. I went through the standard route of being told “you’re completely fine, it’s just anxiety,” only to be diagnosed with MS four years after my first symptoms. I was lucky enough to find a clinical trial for a drug being considered for both MS and long COVID (IMU-838). I used to work as a biomedical scientist before all of this, so I approached it by first identifying a drug I wanted to try and then looking for a doctor or place where I could access it — not the other way around. I’m also in my first week of LDN and already feel like it’s helping — yesterday I regained another bit of my sense of smell, which I had almost completely lost for two years after COVID." +irr-pilot-140,covidlonghaulers,2026-03-12,comment,,"[Upstream reply] +OP, + +Happy for you! + +Can you pls update your post to elaborate on: + + +1- which subtype(s) of LC you categorized yourself + + +2- did you take these under the supervision of a doctor + + +3- where you source the peptides from + + +4- your regimen: + + + - how frequently you take each, + - is there a sequence of peptide intake you follow + + +5- how much this cost you per month + + +6- how long you’ve been on these peptides + +--- + +[Upstream reply] +Thank you very much. I hope the changes sustain. + +Great questions. I will do a detailed post very soon and will go into depth on these questions and other aspects soon. + +Trying to give some basic answers here. + +1 - Honestly, I had symptoms across all subtypes at different points in time. Brain fog, dyspnea, fatigue, skin issues and digestive issues have been my main issues. + +2 - I am taking these under the supervision of a doctor in my family. My experience with doctors in the country I am in has been disappointing. There is almost zero LC awareness, let alone treatment options. So I have had to research a lot and get anything new I want to try approved by my family member. We do regular blood tests and I track as much health data as possible to manage risks. + +3 - Not sure I can share sources here but please feel free to DM for this + +4 - These are my current doses: + +Tirzepatide : 0.5 mg/dose (1 dose per week) (Currently running indefinitely) +Thymosin Alpha 1 : 1.5 mg/dose (2 doses a week) (Running for a total of 12 weeks) +TB-500 : 1 mg/dose (2 doses a week) (Running for a total of 12 weeks) +KPV : 200 mcg/dose (Daily) (Running for a total of 12 weeks) +MOTS-C : 500 mcg/dose (Daily) (Running for a total of 6 weeks) +SS-31: 1.25 mg/dose (Daily) (Running for a total of 12 weeks) +NAD+: 100 mg/dose (2 doses a week) (Currently running indefinitely) +GHK-Cu : 2.5 mg/dose (5 doses a week) (Running for a total of 8 weeks) +BPC-157: 500 mcg/dose (Daily) (Running for a total of 8 weeks) +Epithalon: 500 mcg/dose (Daily) (Running 10 days on, 10 days off for a total of 6 weeks) + + Not following any particular sequence, just trying to stick to the routine. Is there an ideal sequence you're aware of? + +5 - Currently setting me back $740/month + +6 - Been on them for 3 weeks + +7 - Have had LC for around 5 years now, but it really kicked into high gear in 2023 + +8 - Taking a bunch of supplements, mostly for vascular and mitochondrial health. Can share those in a detailed post. Also taking high dose Vitamin D, Omega 3 and a few others as micronutrients. + +Hope this helps.",Just started 0.25mg/ week of tirzepatide. Where do you get yours? I’m prescribed and got it through Eli Lilly but it was quite expensive. +irr-pilot-141,covidlonghaulers,2026-03-13,comment,,"[Parent post: I think a fellow long hauler I met here committed suicide] + +We've been talking for years. + + + +Last messages yesterday were speaking in the past tense. Defeated. + + +Even if he didn't succeed, he seems set on it. We're so similar. + + +I feel very flat & disconnected. I've been heavily ruminating on suicide for months & gave up in many ways months ago. + + +I thought he just posted about having another kid.","I've been really, really close this winter quite a few times. For me, it's partly because I haven't been able to take some of my supplements, my gut microbiome has been bad for decades and rehabbing it is taking a while. So my neurotransmitters are down, and then if you just bother looking at the state of the world in any of the really big metrics, it's not going well. + +I had to find ways to get my neurotransmitters back, without dumping them into my gut. Right now the sublingual route is working pretty well: zinc, magnesium, b-vitamins, and it's been working the last 5 weeks." +irr-pilot-142,covidlonghaulers,2026-04-06,comment,,"[Parent post: Bad Flare-Up and Feel Like I Lost 5+ Years of Progress Overnight] + +I've been in a bad flare-up for a few weeks now, with it really getting bad the last week or so. All of my fun original symptoms from when I first got sick in 2021 are returning -- shortness of breath, chest pain, weakness and pain in my limbs, POTS and inability to be upright for more than a few minutes, weird unsettling allergy issues. I had an iron infusion at the end of February that I was allergic to which I think triggered this flare-up. + +I haven't been ""well"" since 2021 but I'd worked my way back to having my POTS under control and was able to work full-time again (albeit with a significant amount of fatigue). Now I can't even sit up for more than 30 minutes. The most disheartening thing is seeing all my progress vanish more or less overnight. It's really demotivating and makes me wonder what the point of even trying to get better again is if I'm constantly at risk of losing it all again. + +--- + +[Upstream reply] +How terrible! It's so disheartening to have a flare, and I'm sorry you're dealing with this. I have mast cell issues and also have a hard time with iron (can only take small amounts of bisglycinate iron chelate). + + +I saw you're on allergy meds. How much, and so they help? My doctor said you can take up to 4 cetirizine or fexofenidine per day. Have you been offered any meds like Ketotifen, LDN, Cromolyn Sodium, Xolair, etc? What other meds and supplements are you on? Have you had B vitamins and D tested? You don't have to answer if you're venting, but thought I'd ask in case you wanted to troubleshoot with someone. + + +I had a flare last spring due to allergies I believe, but eventually came out of it due to change of season and LDN. It's really hard to lose functionality though. + + +Here are things that helped me in case there's anything you haven't tried. LDN really helped me once I got to 3 mg. I forgot to mention that I also take a small dose of Nadolol and lysine and do the perrin technique a few times a month in the post. + + +https://www.reddit.com/r/covidlonghaulers/comments/1lzsml7/update_to_crashing_around_menstruation_post/ + + + + +I hope you regain some functionality soon.","Thanks for the support! Honestly the allergy meds don't help much -- I'm just on allegra and pepcid. I've tried nasal sprays and sinus rinses and they never work for me due to a deviated septum that means they don't actually reach where the inflammation is. I wrote to my allergist today to ask about some alternate treatments to get me through this because my face feels like its about to fall off from the sinus pain. + +I've tried cromolyn in the past and it also never did anything, the same for LDN sadly :(." +irr-pilot-143,covidlonghaulers,2026-03-12,comment,,"[Parent post: Dream Team Peptide Stack for LC] + +Disclaimer: Not medical advice, just my personal experience for the past few weeks. + +Hola, my LC family. Thank you all for keeping me sane these past few years. This illness can be incredibly isolating and I am glad to have access to this community in what has undoubtedly been the most trying time of my life. + +Just wanted to drop in and share what’s been working for me for the past few weeks. + +From left to right: **Tirzepatide, Thymosin Alpha 1, TB-500, KPV, MOTS-C, SS-31, NAD+, GHK-Cu, BPC-157, and Epithalon.** + +Tirzepatide has definitely been a game changer. I think it has improved my mitochondrial function and lowered inflammation which is allowing everything else in my protocol to work better. + +If there is enough interest here, I can elaborate further on what my rationale has been for using these peptides, and the specific protocol I am following. I will also be posting about all the supplements, medications, and other treatments I have tried. + +My condition has improved so drastically that I have been going on 90 minute bike rides without crashing. In fact, I went on two such rides in a 12-hour window today. Brain fog has mostly elevated, and I feel hopeful for the future again. + +At one point, I was bedridden for a couple of months so it feels like I am coming back from the dead. + +Anyway, hope this information helps somebody here. Don’t hesitate to DM if you have questions. + +Wishing everyone peace and great health. Hang in there! 💪 + +--- + +[Upstream reply] +So glad you’re improving. SS31 has been great for my brain fog and KPV for my mast cells. Unfortunately I can’t tolerate GLP1s even in tiny doses. What else has been the most potent do you think?","i think some people are much more sensitive to GLP-1s. I have to cut the dose down to like 1/8 of the starting dose to manage it. I took them for inflammation and fixing my creeping insulin resistance (due to thyroid issues for years). It worked great for those things, but I was still fighting nausea sometimes at that microdose." +irr-pilot-144,covidlonghaulers,2026-04-08,comment,,"[Parent post: Anyone with experience cycling SS 31, MOTS C and TA1] + +Anyone here have experience with SS-31, MOTS-c, and Thymosin Alpha-1? + +I’m trying to figure out how to structure this in a careful way. Right now I’m mostly interested in SS-31 and MOTS-c since they seem like they might be the most relevant for me, and then maybe adding Thymosin Alpha-1 after. But I’m open to doing it in a different order if that makes more sense. + +I’ve also read a few times that some people do SS-31 first for a while and then add MOTS-c, because they may work better that way, but I don’t know how solid that actually is. + +My main symptoms are head pressure/headaches, neck and jaw stiffness/pain, throat pain, ear pressure/tinnitus, PEM/crashes, and POTS. Because of the POTS, I’m also a bit hesitant about trying NAD. + +I’m trying to be cautious and not change too much at once, so I’d really appreciate advice on things like: + +how long to run each one, + +whether to cycle them or not, + +and how to figure out dosing. + +Also, if anyone has good resources or anything more evidence-based that helped them build a protocol, I’d really appreciate that too. + +Any advice is appreciated.","In Kevin McCairn's use of stem cell growth factors (after DFPP before and after), he said it's some combination from the one hundred peptides that undoes the cascades of damage by the spike protein (messing up all the pathway signaling, inducing dysfunction and vicious cycles tending toward cell death.)  + + +To figure out the exact combo it'd require lots of money & time. Stem cell growth factors race against time for now, in severe cases." +irr-pilot-145,covidlonghaulers,2026-03-31,comment,,"[Parent post: Anger and long covid] + +Curious to hear people's experience with increased anger after getting long covid. I think it's a double whammy for me. The anger of feeling limited by my situation but desiring to be living a more active lifestyle and also there's a direct increase of irritability during a crash. + +I'm in a crash now and I find myself not just angry but enraged and constantly on edge. It's way more amplified than when I'm pacing well. I just have to take some space for myself and not lash out at people or allow myself to ruminate on issues all day.","Mcassssssss makes and ass out of all of us. There are two peer reviewed articles obnoxious mcas causing psych issues. Weinstock is author. Basically, there are mast cells in your brain.  + +Of course, Anger can exist without this and is justified too… Or it could just be nervous system haywire.  + +My rage was mcas. Pepcid stopped it and I was like wtf." +irr-pilot-146,covidlonghaulers,2026-03-13,comment,,"[Upstream reply] +I'm wondering if testing for spike protein is useful at all or if it's better to just go ahead and start with the supplements/minerals - after I've researched them of course. + +--- + +[Upstream reply] +Well i personally dont know enough about it to say if its actually worth it or not, but from what i know about the effects of the vaccine, and my large amount of experience with dysautonomia which is whats usually associated with all this; no i would not say its worth it if u can just do research ur self and try the detox out without going through any of that. It will ultimately just cost a lot of time, energy, and money; with little to no outcome. If u can find the necessary answers through research which u most likely can, do it ur self just be smart abt it. Otherwise, choose between going through years of testing, with either no answers, or some answers and no solutions in the end; or just skip right to a dysautonomia center. Like i pretty much said in the first comment, if ur up to it, just go for the professional path. But if ur symptoms are serious and carry a lot of weight, do not expect the same weight in return from the medical system. The best u can get is ruling out other crazy shit, and maybe a POTS diagnosis. Anything after that will be dipshits telling u to have a lot of salt.","It’s mostly just my vision and brain fog with some dizzy spells which is associated with my vision issues. That being said, in the last few weeks I’ve stated vision therapy and intermittent fasting and I think I already see a little progress." +irr-pilot-147,covidlonghaulers,2026-04-08,comment,,"[Upstream reply] +I really hope this poll gets more visibility and participation. This could provide the biggest indication of a common factor among any research that has been conducted + +--- + +[Upstream reply] +Thanks for that 🙏 +I do think some serious conclusions could be speculated upon from the results of the poll. This long-covid is rather peculiar if you ask me and I’m desperate for a deeper understanding.","It seems that you and me both got a downvote. I wonder why someone would be against a harmless scientific experiment such as finding out what everyone's blood type is? + +How do they think treatments, causes and cures are found? You have to start somewhere, find a suspected cause and then test it. People that are against tests like this, want to suffer indefinitely and find no cure." +irr-pilot-148,covidlonghaulers,2026-03-13,comment,,"[Parent post: LDN (Concerned to try)] + +My main symptoms are fatigue, PEM and some dizziness. Nervous system is out of wack too at times. This has been going on for about 14 months. + +I just got LDN. Is it worth it and tell me your experience?","I feel like it is really helping me. I’m on my third week. Started at 0.5 mg for 7 days, 1.0 for 7 days, and have been on 1.5 mg for about a week. I’ve had no side effects up until the past week, where sleep is a tiny bit restless, but still getting plenty of sleep. I feel it has made me more resilient, able to attend doctor appointments, do some light exercise, without crashing. Today I pushed myself and cleaned the bathroom—never would have attempted this in the past several months. I could feel towards the end that I did too much. “Crashed” on the couch without moving for about 2-3 hours. Thought, darn, I did it again, I’m in for several days of PEM. But hydrated with Nuun and rested and am feeling fine now. Good luck!" +irr-pilot-149,covidlonghaulers,2026-03-12,comment,,"[Parent post: Dream Team Peptide Stack for LC] + +Disclaimer: Not medical advice, just my personal experience for the past few weeks. + +Hola, my LC family. Thank you all for keeping me sane these past few years. This illness can be incredibly isolating and I am glad to have access to this community in what has undoubtedly been the most trying time of my life. + +Just wanted to drop in and share what’s been working for me for the past few weeks. + +From left to right: **Tirzepatide, Thymosin Alpha 1, TB-500, KPV, MOTS-C, SS-31, NAD+, GHK-Cu, BPC-157, and Epithalon.** + +Tirzepatide has definitely been a game changer. I think it has improved my mitochondrial function and lowered inflammation which is allowing everything else in my protocol to work better. + +If there is enough interest here, I can elaborate further on what my rationale has been for using these peptides, and the specific protocol I am following. I will also be posting about all the supplements, medications, and other treatments I have tried. + +My condition has improved so drastically that I have been going on 90 minute bike rides without crashing. In fact, I went on two such rides in a 12-hour window today. Brain fog has mostly elevated, and I feel hopeful for the future again. + +At one point, I was bedridden for a couple of months so it feels like I am coming back from the dead. + +Anyway, hope this information helps somebody here. Don’t hesitate to DM if you have questions. + +Wishing everyone peace and great health. Hang in there! 💪 + +--- + +[Upstream reply] +I'm just doing KVP and TA1 and NAD+ based on what I found another long hauler on TikTok was doing that she feels really helps her. I had already settled on two of those peptides (although they're not all technically peptides). + +I have been trying out peptides for a few years. I did a few courses of SS-31 in the past. But I'm way too reactive and allergic to MOTS-C and Epitalon now, the long Covid high histamines don't help that. I'll do low microdoses of GLP-1s for a few months at a time, and that helps too, but I was losing too much weight so I have to take breaks. The upside is that I can eat a lot more calories now and my weight stays stable, I had been on low calories for too long and my body adapted. + +BPC-157 directly counters my ADHD meds, and now that I'm reacting to more things I will stay away from TB-500 too. I use GHK-Cu and SNAP-8 topically for anti-aging skincare. :)","How long have you been doing the KPV, TA1, and NAD+ combo? What symptoms are they helping? + +Which GLP-1 and what doses have you done in the past? Do you experience permanent symptom relief or do they come back? + +What's your current protocol to deal with the histamine issues? Are you taking any supplements or medications to calm down those mast cells? + +Hope you feel better soon!" +irr-pilot-150,covidlonghaulers,2026-04-08,comment,,"[Parent post: Anyone else microdosing sweets?] + +I will eat cookies or other sweets throughout the day and between meals. I swear it helps keep me from crashing and things get way worse when I just eat meals. Might be a personal superstition or placebo effect though. I was curious to hear if anyone else does the same.","I also have reduced hunger cues. I never used to crave sweets, but I notice that I do sometimes now, which is definitely an anomaly." +irr-pilot-151,covidlonghaulers,2026-03-12,comment,,"[Parent post: LDN (Concerned to try)] + +My main symptoms are fatigue, PEM and some dizziness. Nervous system is out of wack too at times. This has been going on for about 14 months. + +I just got LDN. Is it worth it and tell me your experience?","my advice, start LOW. idiot PCP prescribed it at 50 mg. finally a covid doctor started me at .5 mg - it made me MORE tired. unbelievably tired. another covid doctor convinced me to go as low as .1 mg. YAY! it's not a cureall. my heartrate is extra elevated - but I also have moments now where I almost forget that I have LC." +irr-pilot-152,covidlonghaulers,2026-03-25,comment,,"[Upstream reply] +yeah… REALLY did not see this one coming. + +--- + +[Upstream reply] +To put it lightly. What the fuck even is this existence.",As I lay here with at least 5 different distinct pains and illness feelings all at once with zero cause I feel this is my soul. Supposed to be watching an anime with my fiance and instead I'm using Reddit to help distract me enough that I don't start panting from pain. +irr-pilot-153,covidlonghaulers,2026-04-09,post,Compression socks?,,caretaker for a loved one with extremely severe e/d mecfs/lc here. my friend is asking me to ask this sub whether people think that compression socks for circulation make sense for someone who's bedbound. thanks so much in advance +irr-pilot-154,covidlonghaulers,2026-03-12,comment,,[Parent post: Taurine supplementation as a therapeutic strategy for cellular senescence and chronic inflammation in long COVID: a systematic review and meta-analysis - PubMed],"I’ve been taking 2G of taurine nightly for the last two years. I have significantly recovered compared to my worst, but hard to know how much taurine contributed (other than taurine, my daily supplements are omega-3s, lions mane, curcumin, vitamin D, B complex, and NAC, and prescriptions are LDN, guanfacine, and Wellbutrin)" +irr-pilot-155,covidlonghaulers,2026-04-04,comment,,"[Parent post: Doctor told me not to take CoQ10 because it could cause negative feedback in mitochondria] + +I wanted to ask if anyone here has heard this before. My doctor told me not to take CoQ10, even though I keep seeing people recommend it for mitochondrial support. + +He said it could actually create some kind of negative feedback effect on the mitochondria and potentially make the underlying problem worse. That confused me, because online I mostly see people talking about it as something helpful. + +Has anyone else been told something similar by a doctor or seen research about CoQ10 causing negative feedback or down-regulation of mitochondrial function? I’m trying to understand whether this concern is legitimate.","From what I can find, [CoQ10](https://minaturalsnutrition.com/blogs/news/coq10-benefits-heart-health-energy-how-to-choose) is commonly used in mitochondrial medicine and I’m not seeing good human evidence that it causes a harmful ‘negative feedback’ that worsens mitochondrial function. What the literature *does* say is that evidence for benefit is mixed and condition-specific, except in primary CoQ10 deficiency where it makes the most sense. It’s also not risk-free for everyone because of things like warfarin interaction. So I’d ask the doctor which paper or mechanism they mean, because ‘not proven to help your case’ is very different from ‘known to make mitochondria worse.’ + +[https://pmc.ncbi.nlm.nih.gov/articles/PMC5000852/](https://pmc.ncbi.nlm.nih.gov/articles/PMC5000852/)" +irr-pilot-156,covidlonghaulers,2026-03-19,comment,,"[Parent post: DAE: wildly unpredictable fatigue despite pacing well?] + +And yes, one could argue, are you even pacing well if some days you're just \*so\* exhausted despite lying down for hours each day? And not one bout where I rest for 5-6 hours, but 30 mins at a time and one longer stretch a day like my occupational therapist taught me. I consider myself mild/moderate. I am mostly house bound but can leave the house for one time a day, max 30-45 minutes. Longer under certain very specific circumstances. But the once in a while I wake up, my HRV has dropped significantly over one night, and I can barely get out of bed to get food and stuff... + +Like seriously, what is this shit? Why can't this disease be manageable like diabetes or something? + +How can I be doing everything 'right' and still suffer so much?! + +--- + +[Upstream reply] +Are you truly resting when lying down? + +Not scrolling on your phone? Listening to music? Just really lying flat on your back with your eyes closed? + +If not, that's not resting. That is cognitive/mental exertion and that can also cause a crash. + +If you are.. some days are just worse than others. + +Things like hormones, temperature, humidity, and even barometric pressure have an effect on your body. Even healthy people can notice it, but it usually doesnt really bother them. But for us, with dysautonomia already it can be too much energy to adjust to the weather change. Causing a crash.","Yes, rest means radical rest for me. I 'lay down' a lot more than I rest. + +Maybe I should start tracking the weather, too. I know I am sensitive to thunderstorm headaches, especially in summer. Maybe more came up in that regard. Thanks, I'm gonna add that to my journal tracking!" +irr-pilot-157,covidlonghaulers,2026-03-12,comment,,"[Upstream reply] +I do not have MG, but have pyrid prescribed specifically for long covid. It is definitely helping. + +--- + +[Upstream reply] +I'm glad you don't have MG, but I can see a doctor not wanting to go off label with that one.","Well, my long covid docs suggested it to me. I had never heard of it before they recommended it. They describe the trio of LDN, SSRI, and Pyridostigmine as the standard cocktail to try for long covid brain fog and fatigue." +irr-pilot-158,covidlonghaulers,2026-03-27,comment,,"[Parent post: LDN - Improvements, side effects?] + +I am 6 months in on my LC journey and I am about to start taking LDN on saturday. + +I was wondering what your side effects were and what symptoms did improve after you started LDN treatment? + +Did any of you experience worsening of your overall condition? + +My neurologists specifically explained that I could end up in a way worse condition - apparently there is some risk involved. + +Thanks for sharing your experiences. + +Take care. + +--- + +[Upstream reply] +I have had a fairly unusual experience compared to the things I read others have. I started low and slow, and only got some mildly vivid dreams. After some time I reached 0.75mg/day (I think) and I got extremely depressed. Not suicidal but just crying all day. This disappeared when I skipped a dose for 1 night. + +Then I decreased my dose one step, and it was all fine. After some time I went back to 0.75mg and I immediately got super sad again. + +After trying 2 or 3 more times, I decided to skip to a dose of 2mg. Oddly, I felt fine at that dose and slowly increased to 3mg and stayed there for the past 1.5yr. + +I do still have a hangover-like side effect, but the good still outweighs the bad. +I do think that this is a dose related side effect and I hope to get better help in the coming year.","Interesting. Thanks for sharing your experiences! Which of your symptoms have improved since you started taking LDN? My neurologist is convinced it mostly helps with muscle pain/weakness, fatigue and brain fog" +irr-pilot-159,covidlonghaulers,2026-03-29,comment,,"[Parent post: Random symptoms] + +I’ve been long hauling since October 2021, I was only 17, now I’m 21 and for the past 5 years that I’ve been long hauling, I’ve noticed a weird pattern of randomness in my symptoms. What I mean by this is let’s say I have moments where I feel a dull stabbing headache but then my balance seems okay, and I can walk normal but later on that day, my headache would disappear then I’ll have issues with balance and walking. Then later I’d start to have shortness of breath but no problem with balance/walking or headaches. What’s constant though is the blurry vision and derealization. I was wondering if any of y’all notice some kind of pattern. Hope everyone is coping well 💜","Have you checked your b12 and ferritin and folate and made sure they are in the top half of the range? I had these symptoms but getting my vitamin levels sorted out along with b12 injections resolved many of them. Covid depletes vitamins so it’s something to check just to make sure deficiencies aren’t causing symptoms or making them worse. But yes, in my experience every day is different in terms of symptoms." +irr-pilot-160,covidlonghaulers,2026-03-29,comment,,"[Parent post: Head pain] + +Around a year ago I got this head pain, I try to explain it. + +Its like stabbing pain, its like a line like the vain inside my head feel sharp pain? + +I was wondering if any of you have the similar issues? + +My head pain is much milder now and it only happens rarely. + +I did multiple MRI and the doctor did not find anything and relate that to stress or (maybe migraine) + +My head mri actually showed this: + +""a few nonspecific very small T2-enhanced foci of white matter are seen"" + +Some neurologists said it is normal for my age (35 yo) some said it can be related to migraine + +--- + +[Upstream reply] +Aspirin helps me. It’s a blood thinner, so it tracks since LC is vascular. Also since LC, my blood is super thick. Perhaps the same for others? Thick enough that it’s hard to take my blood.","I took aspirin too my doctor prescribed me, what was the dosage? +Mine was 80mg daily but I stopped after 3 months" +irr-pilot-161,covidlonghaulers,2026-03-24,comment,,"[Upstream reply] +I begged my doctor to check me for venous compression. She finally scheduled me for an arterial compression management with painful leg cuffs that measured changes in my leg blood pressure. Not at all helpful. I don’t know what to do. + +--- + +[Upstream reply] +I had to self refer, man. My insurance plan allows self - referrals as long as the provider is in network. The only tests that rule out iliac vein compression are Venogram and IVUS. Your doctor is just plain wrong. Do not take no for answer, get a different provider to refer you, self - refer, or bing in every bit of data on vascular compressions and long covid you can. I’m sorry. This is really substandard care.","Thanks, and good for you! Yep, mine was an arteriogram. As if I was a chain-smoking octagenarian. Obviously, the tests came back normal. I’ll figure something out… I have so many similar symptoms as you did and have tried many of the same supplements that you have. I’m going to give nicotine patches a shot next." +irr-pilot-162,covidlonghaulers,2026-03-12,comment,,"[Parent post: Long Haul Fasting with Long Haul Covid] + +I had an interesting experience with fasting recently. I often do intermittent fasting with no issue, but decided to do a 24 hour fast a few days ago just to see how it felt. + +I stopped eating at 7 pm and planned to eat the next day at 7 pm. + + +I felt very good until the evening. Because one of my clocks was wrong by an hour (???), which I discovered later that evening, I accidentally fasted for 25 hours. + +I am glad this happened, because something odd happened. At about 24 hours into the fast, I swear almost to the minute, my legs starting having weird vibration feelings. This always happens when I over-exert myself. This is my major sign of PEM. + + + +Later I learned that autophagy kicks in at 24 hours. + + +Anyway, I don't know if this is a good or bad thing. I am hesitant to try again, but at the same time, intrigued by the power of autophagy.","I fasted a lot before LC and have done several 2-3 day ones since when I am going through a stretch of feeling “good”. I’ve stopped a couple early bc I felt off and I wanted to err on the side of caution. Once after not doing it for a long time, the transition to ketosis seemed really clanky and I thought I was having a crash, but if passed and my fast went on without a hitch. My advice would be listen to your body. Drink plenty of electrolytes if you’re going 48-96 hours. I feel better during them, but haven’t gotten huge improvements. I mainly need to lose/maintain weight since I can’t exercise." +irr-pilot-163,covidlonghaulers,2026-03-12,comment,,"[Parent post: Does anybody else get PVCs/palpitations?] + +I know they are harmless as I have had many EKG’s and monitors, but they still are uncomfortable and freak me out. I realize I notice the more at night as that’s when my heart rate naturally drops the lowest. It the feeds me lots of anxiety an adrenaline, and I’m bad at not freaking out. Does anyone have any tips to stop them or help the anxiety? I can’t lay down until they stop, otherwise I’ll feel them .","I get them more in the morning and my heart stabilizes throughout the day. Eventually my nervous system settles to the point where I only get them if I really pushed it (too much exertion, not enough sleep, too much caffeine, etc), or am really stressed. +Do you notice them more on days of higher activity or increased stress?" +irr-pilot-164,covidlonghaulers,2026-03-12,comment,,"[Parent post: Full circle moment haha] + +A Dr asked me today if I think my pain/ symptoms are just health anxiety 🫠 over 3 and a half years with Long Covid I didn’t think I would hear that one again. + +--- + +[Upstream reply] +Well fuck them. + +On a positive note: My doctor said to me a few weeks ago: ""It's not wonder you are anxious, if I was that sick for 4 years, I would be anxious too!"" She still can't help me (except for bloodwork and some symptom relief / vitamins), but at least I feel seen and she doesn't try to gaslight me \^\^ This is how doctors should react","Wow that's amazing. Ive had like one doctor who made me feel seen, he was a chiropractor who diagnosed me with CCI from Xrays. He said no wonder youre feeling awful, and cant do anything.  + + +Unfortunately A/O treatments havent helped at all and i continue to deteriorate. Im probably looking at either PICL or fusion surgery..both terrify me." +irr-pilot-165,covidlonghaulers,2026-04-03,comment,,"[Parent post: Vitamin D + upping ketotifen got me out of crash] + +Just in case anyone else is supposed to be taking these and has slacked lately like me, I've been in a 3 month crash and taking 5000 IU vitamin D (blood tests showed deficiency) + 1mg ketotifen per day has got me back to being able to walk to work in the morning without collapsing (about 2k steps), hit 10k steps/day a few times a week, and jog 0.5-0.75 miles a couple times a week (at night). + +I've been feeling so hopeless being in one of my worst crashes ever but I see the light at the end of the crash tunnel! It is absolutely a miracle to be able to move my body and to stay in the office for a full work day and not feel like death. Yay! + +Obligatory: my main symptoms are POTS, mild ME/CFS, post-concussion-type vision and vestibular issues, and histamine intolerance with GI symptoms","Just wondering when you first started Ketotifen, how long it took for you to see a noticeable improvement? Thanks" +irr-pilot-166,covidlonghaulers,2026-03-13,comment,,"[Upstream reply] +This is so interesting, and appeals to me as an approach. I’m much happier with exercise. Can you talk about your schedule and/or sources? + +--- + +[Upstream reply] +>*Can you talk about your schedule and/or sources?* + +Sure. The following is what works for me, and it's highly turned to my particular symptoms. What works for me could be disastrous for others. + +First of all, **the problem I have**, what my LC has settled down to, is lung inflammation. During aerobic exercise, if I don't follow my supplement+drug protocol, I get rumbling sounds in my chest, shortness of breath, premature lactate burn, fingertips turn blue, and I have to stop and walk the rest of the way. + +That's what I'm trying to fix and trying not to aggravate. + +Each week I train 5 days and rest 2 days: gym, long run, short run, rest, gym, long run, rest. This seems to work for me. + +**The gym session** is normal. No drugs beforehand, No meals beforehand, sometimes a whey protein drink an hour before. I train for strength, to near failure, with supersets and trisets, so I don't stop. It's time efficient, and paradoxically, stopping to rest between sets seems to make me tired. + +After that, I do some interval training on an elliptical cross-trainer: multiple 3-minute segments back to back, where the first two minutes are easy and the next minute is moderate to hard. That 1 minute interval starts off moderately easy, then gets progressively harder until I can barely do it. + +For some weird reason, the weight training seems to suppress my LC temporarily, making interval training possible. So I take advantage of the suppression, and use interval training to try to trigger fat adaption, lactate tolerance, mitochondrial adaption, cardiovascular remodeling, and so on. + +**The jogging session** is more complicated. I take a drug stack about 2 hours beforehand: baby aspirin, Alinia, nattokinase, coQ10, nitric oxide boosters (arginine, citrulline), coffee, in a drink of half coconut milk and half dairy milk. The fat content promotes good absorption of the Alinia. + +The long run is 1 hour long. I start with an easy 30 minutes of mixed walking and jogging (run a bit, walk a bit, run a bit, walk a bit). This seems to prime my body for the next 30 minutes, which is all slow jogging. If I don't prime my body like this, I struggle with the second 30 minutes. + +The short run, once per week, is like a status check: 15 minutes slow jog, 1 minute walk, 15 minutes slow jog. How much I struggle with the final 15 minutes tells me how I am progressing. The first 15 minutes I can always do; the final 15 minutes is variable. + +After each run I check my blood oxygenation with a pulse oximeter. If I trigger the LC, i get readings of 90% or below. A reading of 94% or more is ok. + +Lately I've been getting readings of 97% and 98% (great!) because of the nattokinase (new addition to my protocol). I still get premature fatigue through, I am nowhere near the level of fitness I had pre-pandemic. + +The nattokinase is not enough on its own (I tested this recently), I still need the Alina, but thenattokinase is definitely helping. Next on my list to try: pycnogenol, NAD+ boosters. + +Other supplements later in the day: zinc+vit. C, vit. K2, creatine, carnitine, choline, quercetin. + +Diet is meat, fish, vegetables, fruit (berries and oranges), fermented foods like kimchi and sauerkraut, dairy (hard cheese, full cream milk), sheep's yoghurt, whey powder (total 120 g per day) in drinks with cacao and extra leucine. Butter for cooking. Olive oil for salad dressing. Garlic, + +Water infused with lemon and ginger throughout the day, including at the gym. I take a sip after each set, so that by the time I get to the interval training, I am well hydrated. + +That plus time-restrictive feeding. It's all highly tuned, but I'm still experimenting to get better results. + +I still have LC, and maybe I'll always have it. So my plan B is improve my fitness enough that I can stop the drugs and yet not trigger the LC during my usual training - I would settle for that.","Thanks for sharing, v. interesting. I’m a rower, before my last crash I was training 5x a week and now trying to get back to 2x or 3x easy rows/wk if possible w/ self-permission to just skip as needed. I’m doing long walks, a ton of amended water, quercitin, about to start creatine." +irr-pilot-167,covidlonghaulers,2026-04-08,comment,,"[Parent post: Sounds silly, but has anyone tried laugh therapy?] + +Probably most people have heard that there are scientific studies that laughing reduces stress, which calms the immune system. It can even help heal injuries faster. Since the PEM of post viral syndromes like long covid and CFS seems to be due to the immune system not standing down, I thought I would try it, since tons of supplements and drugs haven’t helped me. + +So I’m giving it a try with that comedy improv show, Whose Line Is It Anyway? I love that the humor doesn’t come from people being mean to each other, and it very consistently makes me laugh out loud for the entire 20 minutes, and there’s like 20 seasons on YouTube, so enough for weeks of sustained laughter. + +Has anyone else experimented with laugh therapy?","I hate laughing about nothing, but I do like dark illness humor! + +I think it hasn't to be laughter out loud. Doing or watching something that brings you joy or the feeling you are not alone will help to ease the burden. The less burden the better for the nervous system." +irr-pilot-168,covidlonghaulers,2026-04-08,comment,,"[Parent post: After 1,5 years I see no sense in ""treatments"" anymore...] + +After 1,5 years I am just done. I tried to crawl and claw my way back to life. My veins are fucked from hundreds of infusions and blood draws. I am sick of all the off label meds that cause more side effects than do good. I have been to all the ""specialists"" and even the most competent ones fail to recognize the extent of damage Covid does. I paid so much money and had so much trouble with my insurance for so little progress. I was able to get some improvement, but the more I research about Covid damage (e.g. cranial nerve damage), I just see no sense anymore to carry on. There are so many diseases, malfunctions, impairements caused by the virus (and before that the vax in my case) that there cant be any form of recovery for me. I really tried to give meaning to this life, but the things I loved to do and wanted to achieve are gone. And nope, brain retraining wont help with my endothelitis or impaired brain nerves. I always fought through this, but I just see no sense anymore.","Heck no, I’m not giving up. So far, I have found the following while looking for the cure: EDS, jugular compression, Csf leak, TOS, and MALs in addition to pelvic vein issues. I’m also treating EBV reactivation and seeing some improvement." +irr-pilot-169,covidlonghaulers,2026-03-24,comment,,"[Parent post: 80k longhaulers] + +We went from 78k to 80k users in just the last wave. After probably 2-3 years of compulsively checking this subs user #’s this last wave gave us more people than I’ve ever seen join in such a short time. This isn’t slowing down its speeding up and people are waking up to the fire. Just want to say we’re not forgotten and our shitty army is growing everyday hopefully we can mobilize that into meaningful action. Don’t lose hope just get louder than ever. + +--- + +[Upstream reply] +It is, unfortunately, slowing down. Long COVID rates are decreasing. As a genetically-driven condition, a lot of people who have gotten it have already gotten it. + +https://jamanetwork.com/journals/jamanetworkopen/fullarticle/2845675",Gona have to disagree with you on that one. The study linked is talking about a decline from the very start of the pandemic to 2024 which I think is a pretty common knowledge. But I think the past 3 years have held pretty steady between 5%-8% +irr-pilot-170,covidlonghaulers,2026-03-21,comment,,"[Parent post: How open is your primary care provider to trialing off label meds?] + +My PCP is extremely resistant to trying any medications because the risk/benefit ratio is high she says. I put in so much time and effort researching a med idea from here and all the patient reported lists and I bring them to her and it’s like fighting tooth and nail for her to prescribe anything. The meds I’m asking for are basics like low dose calcium channel blocker, a different beta blocker, etc. I say to her “I’m responding to supplements that are helping my endothelium, what meds are there available that would help endothelial function and can I try one at a low dose?” She just stares at me like I’m speaking an alien language. + +Are other people getting the same response or is my pcp way too conservative and not knowledgeable enough?","Hi OP. + +I'm curious what supplements for your endothelium you've had success with, and which drugs for same you'd like to try? + +I'm taking citrulline, pine bark extract, vitamin C, curcumin, bromelain, quercetin, and nattokinase, and am thinking about trying low dose tadalafil." +irr-pilot-171,covidlonghaulers,2026-03-13,comment,,"[Upstream reply] +Tell me more please + +--- + +[Upstream reply] +Look into MCAS, sources I think are in this sub headlines or just look at posts. Mastcell Activation Syndrome is very common in long haulers, it's basically this cell (that you know from seasonal allergies cause it produces histamines and that why you take antihistamines in spring) that conveniently degranulates as a response to constantly being ' on ' thanks to signalling and stress from covid/pfeiffer and happens to not only produce histamine but also 300? 1000? other chemicals that release into your system and wreck total havoc. From food allergies to nerve jolts to brain fog to anxiety to rashes to gut issues. Constant low grade inflammation will eventually lead to systemic fatique and can lead to me/cfs. MCAS drains you of energy and can even cause PEM fatique, that literally damages your mitochondria. It sucks. But yeah so that's why most protocols for long covid start with taking antihistamines H1/H2 and a mastcellstabilizer like ketotifen, sodium cromolyn in combination with low histamine diet (sources: mastcell360) and natural stabilisers like quecertine or lutoline. Light and sound sensitivity and being unable to read or watch a screen? MCAS too. I have been doing great on ketotifen and quecertine this past year, take a while to get used to but greatly improved quality of life. Read up on it, it's a lot to dive into.",Totally this. Once I realised I had MCAS and started medications and a restrictive diet I have improved dramatically. Wish I had had figured this out years ago. +irr-pilot-172,covidlonghaulers,2026-03-12,comment,,"[Upstream reply] +Most americans wpuld be shocked to hear thar australiss free health care is just a hell scape. They think usa the the worst in health care but havent seen how horrid it is in australia... + I would discribe aus health as just hell. + +Theres not much here, it depends on your symtoms too. + People talk about clinic 19, makr donohoue, and dr robert clancy of CDD. + But honestly deprends on your symtpoms. + +--- + +[Upstream reply] +Absolutely. It’s all very kumbaya and idealistic in the national and international media - somehow the NDIS works perfectly without a hitch, and everyone under Medicare is being beautifully taken care of, and somehow “free“ healthcare totally doesn’t result in low standards, corruption, horrendous careless mistakes, and such long waiting periods that many old patients die before they get to have their life-saving procedure. It also creates a psychological hump in the population, where people accept miserable treatment because it’s “free”. I’ve heard people in a waiting room saying “I got nothing out of that consultation and I’m in so much pain but hey it’s free. Beggars can’t be choosers”. Hey friendo it’s not free. Just because your particular clinic bulk bills, the GP who just rejected doing anything for your quality of life got paid $250 or whatever by the system. I have found that through my interactions with the medical system I have developed a sort of learned helplessness because I know nothing is going to be taken seriously or ever acted on and I’m not going to get procedures or medication’s 90% of the time. Straayaaa! #firstworldsocialistutopia","I have had the same experience in America. Only the wealthy get quality care here. And the gap between the haves and have nots is growing, intentionally because of trickle down economics that greedy folks buy into. As if billionaires aren't going to rent a town in Italy for a wedding instead of paying employees actual living wages." +irr-pilot-173,covidlonghaulers,2026-03-17,post,B12 and D Vit Lab Update!,,"Both vitamins are out of range, but not terribly? + +Unsure how to interpret it but Im happy that at least something looks not normal to match how crappy I feel!! Lol + +Vitamin D, 25-Hydroxy 01 + +Current Result + +28.8 Low + +Reference Interval 30.0-100.0 + +Units ng/mL + +Vitamin B12 01 + +Current Result + +1293 High + +Reference Interval 232-1245 + +Units pg/mL" +irr-pilot-174,covidlonghaulers,2026-03-13,comment,,"[Parent post: Chronic inflammation (High CRP), autonomous nervous system issues and possible help from stellate ganglion block ? Searching for a provider in SF Bay] + +Hi fellow Long haulers. I have had long covid for 4 years now. I have gotten much better over the years and what is left is chronic inflammation (high sensitive CRP) and CF with PEM and some POTS (treated with Ivabradine). I am very blessed to be able to work full time, and my boss is understanding when I have a flare up. I am rarely bed bound anymore when I flare up. I live in the San Franisco Bay and I have had a good luck with doctors here. My PCP was generally very supportive of my ideas such as starting LDN (helped amazingly! )even though she has never heard of it but she left and I will see a new PCP next month, which brings a lot of anxiety. I am trying to get 100% better and I think my autonomous nervous system is out of whack (I have a PhD in biology so I understand how these things work) . I think the dysautonomia is the key (together with the inflammation). So my question is- is there anyone here from SF Bay who knows a provider who can prescribe a Stellate ganglion block or at least evaluate me? Also, do you have experience with it? Another question is what else I can try for the high CRP? My CRP is 8 when I flare up and around 4-5 when im outside of flare up, which is still high. I am on LDN, Montelukast, I take black seed oil and nothing seems to be able to take the CRP down. Thank you so much!","Virgin Coconut Oil reduces CRP. I found that just 1 teaspoon a day in my coffee or tea makes a big difference when I have COVID and for that 10 weeks after getting COVID. (It’s sold in a semi-solid in a plastic tub about twice the size of a large peanut butter jar). + +https://pmc.ncbi.nlm.nih.gov/articles/PMC10808878/" +irr-pilot-175,covidlonghaulers,2026-03-18,comment,,"[Parent post: Weird: my seasonal allergies disappeared?!] + +Before LC I had pretty bad spring allergies every year (runny nose, itchy eyes, constant sneezing, needed meds). + +Last spring… nothing. Maybe very mild, but basically gone. Meanwhile a friend who always gets them at the same time still had the usual symptoms, same intensity. + +Now I’m wondering: + +Does this mean anything? + +Could this be related to LC / immune changes? + +Does it point to a specific “phenotype” or direction (like immune suppression vs overactivation)? + +Has anyone else had allergies disappear after getting LC? + +For context, I’m dealing with ongoing symptoms (head pressure, neck/jaw stiffness, throat issues, crashes, etc.), so I’m trying to understand if this shift in allergies is a clue or just random. + +Curious if others experienced the same and if I will be allergy free this spring again.","Nope, it's the opposite for me. My allergies are significantly worse. I got tested and I am now allergic to something like 18 of the 23 things they test for. My last big relapse was last October when I think ragweed allergies got me pretty good. I actually just started on allergy shots in hopes that I can avoid that again. I was on a quadruple dose of antihistamines and even that wasn't enough. + +I think for me (and I would guess most people) my histamine load is just higher in general. So even if my allergic reactions stayed the same, when my histamine load is already high, any allergic reactions are going to be even more exaggerated. + +Cool that yours stopped, though! I wonder why that is." +irr-pilot-176,covidlonghaulers,2026-03-15,comment,,"[Parent post: HBOT was my last hope] + +I got Covid in May 2022, and since then have suffered POTS, PEM, and ME/CFS/extreme fatigue. I was pretty much bed bound for 2 years, but eventually have gotten about 60% back to normal with working some shifts here and there but not full time, and crashing after every work day. The most helpful things were: + +\- LDN (now at 6mg) + +\- Propranolol + +\- Midodrine + +\- Hydration with electrolytes + +\- Vyvanse on work days + +\- pacing (started at extreme bedrest with only allowed 5 minute upright time every hour) + +I recently had 40 sessions of HBOT, and it hasn’t helped me at all. I feel at a complete loss. + +Somehow, being able to work only a little bit then spending all my time outside of work sleeping and recovering feels even more devastating than when I was on bedrest, and I just feel like I’m not truly living and have lost so much of my youth to this condition already. + +My cardiologist told me there was nothing more she could do, and every other doctor I see gives me the runaround that it “isn’t their specialty” so won’t even order blood tests I request or try new tests/treatments for me. + +I’m mostly just sharing my experience with HBOT in case others were considering it, but obviously would welcome any advise anyone may have to share as well. + +--- + +[Upstream reply] +-intermittent fasting. + +-rice chicken veggies + +-Allegra and Pepcid (if you have MCAS form long covid) -( I didn’t think this would work put it off and it was what put my issues into remission) + +-Vitamin c high dose (from natures lab with quercetin and bioflavonoids) + +-magnesium glycinate + +-matcha green tea (Ltheanine and egcg) + +- no sugar or carbs (essentially keto diet you want to go into ketosis for weeks) + +-cbd high dose 500mg twice a day + +These are all the things that put it into remission. + +( I had 60+) symptoms + + +If i don’t drink matcha I get fatigued. If I don’t take the vitamin c I get fatigued. If I don’t take CBD I get fatigued. +If I eat sugar I get fatigued. + +Lifestyle changes +- cold exposure ( at first just Cold water over my wrists) +Now cold showers. + +Little bit of movement every day… + +Started with yin yoga and tai chi. + +Love and respect in healing. Don’t give up. It’s hard. It’s hell. You are doing it. Keep going. + + + +[most comprehensive guide](https://www.drgalland.com/longcovid) + +This guide is the best.","Agree… i noticed huge difference after Allegra + Pepcid. Magnesium, Vitamin D, Quercetin, Vitamin C, Electrolytes. + +Its odd because ive tried many combinations and I truly think you have to find the right combination/timing. For example I noticed generic Zyrtec (Amazon brand) wasnt working. Brand name Zyrtec worked better… very odd I know. But Allegra seems to be even better. Small changes to a routine can yield big results." +irr-pilot-177,covidlonghaulers,2026-03-16,comment,,"[Parent post: Monoclonal antibodies for long COVID] + +I just saw a video talking about monoclonal antibody treatment being used for long COVID and it made me curious https://vm.tiktok.com/ZNRHooRLT/ + +Has anyone here actually tried monoclonal antibodies for long COVID or other post viral issues?? + +Did it help with symptoms like fatigue, brain fog, immune reactions or inflammation + +I would really like to hear if anyone has real experiences with this treatment or knows more about it","r/Sipavibart + +Private survey data indicates that about half of all patients who tried pemgarda experienced an improvement. + +When the responses are limited to just those that are well matched to the treatment (2022 and beyond onset, no MCAS, and Attomarker hypoimmune), success rate goes up past 65%. + +Also: stop getting your long covid news from TikTok." +irr-pilot-178,covidlonghaulers,2026-03-13,comment,,"[Parent post: Poppers for microvascular dysfunction?] + +This may sound like a stupid question but whats your opinion on poppers? I know they have a vasodilation effect and considered relatively safe among other ”drugs”. I’m wondering if it has The same effect as nitroglycerin. What are your thoughts ?","I have considered this but I haven't tried. L-Citrulline, Viagra, Cocoa flavenols etc are all vasodilators that I do take. But I wonder if poppers might work on brain circulation more than other parts of the system. I don't know how healthy it is though, especially taking it a lot. Let me know if you try!" +irr-pilot-179,covidlonghaulers,2026-03-12,comment,,"[Parent post: The psychology of LC] + +When in crash/PEM: “it feels I have no life anymore” + +On a normal day: “wow feel great. the world is my oyster” + +This alternates constantly… + +--- + +[Upstream reply] +OMG, SOOO true. I’ve been feeling better recently. Feeling more resilient, for example, able to go to a doctor’s appointment last Friday, even drive myself (next town over), which was first time I had driven myself in over a month. I totally expected a subsequent PEM crash but I didn’t crash. Been doing very, very light recumbent exercises on floor on yoga mat (slow leg lifts) in the evening. Then today decided to join my husband for the beginning of “his” (formerly “our”) daily Noon walk. Made it to the end of the driveway and was like, “That’s enough for me today!” Getting better listening to my body. FWIW: I’m thinking it’s the LDN that I started 3 weeks ago that’s made me turn a corner. Currently on 1.5 mg. Started at 0.5 mg and increasing every 7-10 days.",That’s great to hear you’re making progress! I’m at a similar stage after a couple of years. I have driven a car a couple of times to appointments (before the sensory input would push me into PEM) and doing light exercises. I was not a good responder to LDN but it sounds like you’re on the right side of the 50%. +irr-pilot-180,covidlonghaulers,2026-03-11,comment,,"[Parent post: Low Ferretin, Vitamin D and B1] + +Has anyone that's had low levels of ferretin, vitamin D or b1 seen improvements after increasing these? + +Ferretin = 12 + +Vitamin d = 28 + +B1 plasma = 6","I’ve never felt any improvement after correcting deficiencies. But, it’s critical to make sure you fix these so they don’t prevent your recovery, or make things worse. Your body needs all of these things." +irr-pilot-181,covidlonghaulers,2026-03-12,comment,,"[Parent post: Low Ferretin, Vitamin D and B1] + +Has anyone that's had low levels of ferretin, vitamin D or b1 seen improvements after increasing these? + +Ferretin = 12 + +Vitamin d = 28 + +B1 plasma = 6","I've been working on my ferritin, B12 and folate since December and it's definitely making a difference. My LC moderate, dysautonomic. My D was fine and my ferritin was low but not as low as yours. A few of my symptoms have pretty much disappeared, my energy envelope feels bigger, and my brain fog is MUCH better. I do supplement but also eat a high mineral diet." +irr-pilot-182,covidlonghaulers,2026-03-12,comment,,"[Parent post: Taurine supplementation as a therapeutic strategy for cellular senescence and chronic inflammation in long COVID: a systematic review and meta-analysis - PubMed] + +--- + +[Upstream reply] +This is significant and I thank you for sharing. +Any taurine-takers care to validate their own experience vs the literature?","I take it for GI stuff (sphincter of oddi dysfunction, I don’t think it’s LC related), haven’t really noticed a difference for LC" +irr-pilot-183,covidlonghaulers,2026-03-29,comment,,"[Parent post: One of the few (private) long Covid clinics in the UK has shut down due to harassment from ex patients] + +like come on guys, what are you doing? + +--- + +[Upstream reply] +I’ll give context here because my homegirl in the UK is a patient of hers: + + +Basically, Dr. Taylor went months without providing any documentation for patients. Yes, months. Important documentation. Years ago she had a similar incident. This time, a bunch of her patients started discussing it online and were understandably very upset. Apparently her husband is the one who does a lot of her paperwork for her or something weird? Anyways, the clinic decided to cut ties with her. + +As far as who’s in the right and wrong? Both are wrong. We don’t know the details as to what supposed threats she was receiving, and if true they should be arrested. She also isn’t blameless and was overtly negligent in helping her patients and providing them what they needed in terms of very very important paperwork. This letter cries victim, but she was the one who created an issue in the first place. There’s a CFS doctor in America who’s had a similar problem lately. For some reason, they‘re just difficult to get real documentation from. + +TLDR: Dr. Taylor didn’t give patients their documentation for months. Someone(apparently) threatened Dr. Taylor. She was let go by the Clinic.","While she shouldn't have delayed documentation for months, the dissatisfied ex patients shouldn't have harassed her. In the UK, there's defined escalation pathways, like complaining to the GMC or ISCAS. + +I get the frustration because I'm also under a private long Covid Clinic where the doctor is, I sometimes feel, oversubscribed, and there's been times that I've been dissatisfied with the service. I've also rang my clinic in tears for delayed documentation (albeit not months of delay). But I would never launch an online campaign and start harassing them. People need to think of the consequences of their actions and how it'll impact the wider community." +irr-pilot-184,covidlonghaulers,2026-04-02,comment,,"[Parent post: Coq10- Now I Know] + +I've been taking Coq10 for awhile, but I've never been quite sure if it was having any effect. Still, I figured I'd finish the bottle, since I already paid for it. + +Well I ran out a couple days ago and wow it was definitely doing something. I'm so exhausted and I can barely get out of bed or even stay awake! I guess I need to go get more Coq10 ASAP.",Anyone who takes a beta blocker and then added Ubiquinol notice their blood pressure drop at all? I’m on propranolol so just wondering if anyone had any issues with their BP when adding it. +irr-pilot-185,covidlonghaulers,2026-03-15,post,Did famotadine/pepcid make things worse for anybody else?,,When I get famotadine my muscle burning/lactic acid feelings get so much worse. Anybody else have this? +irr-pilot-186,covidlonghaulers,2026-03-14,comment,,"[Upstream reply] +For me this was mast cell related, Ketotifen pretty much stopped this. Have you tried it? + +--- + +[Upstream reply] +I haven’t. Is that over the counter? + +I’m taking another mass cell test on Monday actually","No it isn’t unfortunately, not in England anyway. You might find your tests come back normal but medication might help you and you can be diagnosed if you have a positive response to Mast cell meds. It’s really about finding a knowledgeable doctor." +irr-pilot-187,covidlonghaulers,2026-03-13,comment,,"[Upstream reply] +Yes! Mucinex D. Only the max strength works for me. The regular didn't do shit for me either. + +Side note when I take it is makes my pee smell if I do not drink enough water. So make sure you stay hydrated. Lol Maybe this, but just something I found out. + +--- + +[Upstream reply] +But did you get any anxiety, as side effect? I’m asking because I saw it contains high doses of some ingredients which might interact with the heart and/or the blood pressure. This scares me a bit, because I have POTS (due to Long Covid). What has been your experience so far?",I have not had that experience at all. I take meds for high blood pressure and I have high anxiety too. +irr-pilot-188,covidlonghaulers,2026-03-17,comment,,"[Upstream reply] +>*He said it could actually create some kind of negative feedback effect on the mitochondria and potentially make the underlying problem worse* + +Ask him for relevant references to the medical literature. Tell him you would like to read about it, so you can understand LC better. + +Ask him which researchers and institutions are doing the best work on CoQ10 risks, so you can follow them and keep up to date. + +Ask him how he first became aware of this. + +Ask him if this CoQ10 negative feedback effect is dose-, age-, or sex-dependent, so you can better appreciate your risk. + +Ask him what he thinks your risk is of getting worse; ask for a number: 1 in a thousand, 1 in a million, ... + +Take a notebook and write down eveything he says (routine for me). Let him see that you are writing it down. + +If you don't get details, and get ""handwaving"" instead - non-answers that try to hide a lack of knowledge - be suspicious. If you get criticized for asking questions, that's a red flag. + +--- + +[Upstream reply] +Understand that if you do this you will enter into an adversarial relationship with the doctor and won't get anything useful out of them ever again. Fun way to burn the bridge if that's what you're looking for, but don't do this if you want to continue to have a working relationship with them",">*if you do this you will enter into an adversarial relationship with the doctor* + +It depends. + +Some doctors like to show their expertise. They can tell by my questions that I'm receptive to a more in-depth answer. They can tell by my follow-up questions I'm absorbing what they say, and that I've done some homework. So, they get comfortable that time spent describing their expert view is not wasted on me. + +These are the doctors I want to spend my money on. + +Others flounder undet this style of questioning, because they are frauds. Coming from a demanding tech background, I am absolutely ""adversarial"" towards anyone who tries to fake expertise." +irr-pilot-189,covidlonghaulers,2026-03-13,comment,,"[Upstream reply] +I'm getting IvIG in Belgium for a post-COVID small fiber neuropathy. I'm 9 months into my treatment, with 14 infusions received in total so far. The last one ended earlier today. + +I'm following the protocol described in this paper: https://www.neurology.org/doi/pdfdirect/10.1212/NXI.0000000000200244 + +There's some evidence that I may be responding, but I will likely need the treatment to be extended beyond the funding granted but our health system. + +--- + +[Upstream reply] +How are you doing? Do IVIG work for you?","Thanks for asking. IvIGs cause very significant physical fatigue and headaches. The treatment has had a substantial impact on my daily life and my ability to work. + +There are signs that the treatment may start to be effective, however, although I need to discuss them with my neurologist. Starting with the 10th infusion, there's a pattern of neuropathic pain decreasing to zero over the 7 days following an infusion, and of a subsequent, gradual wearing off effect until the next infusion." +irr-pilot-190,covidlonghaulers,2026-03-23,comment,,"[Upstream reply] +Ideally, cortisol is highest in the morning as you wake up, and lowest at night when you go to sleep (the opposite of melatonin levels). + +Cortisol is somewhat demonized, but it has several roles to play in the body. + +In my case, the low cortisol was causing salt to be excreted, leading to very low blood pressure (among other things). + +--- + +[Upstream reply] +I looked into it a little. That's kind of interesting. Apparently long COVID is more associated with low cortisol than high cortisol. Which I guess makes sense considering cortisol is anti-inflammatory and long COVID seems to be associated with a lot of issues with inflammation. + +Apparently the issue is usually your mind is just not responding to cortisol correctly more than the level of cortisol itself. + +And yeah, I think I'll start taking my LDN again.","In my case, my cortisol levels were inverted; lowest in the morning and highest just before bed, leading to insomnia. + +And yes, cortisol is the body's steroid, so anti-inflammatory. + +Interestingly, my cortisol levels normalized after I'd been on LDN for a little over four months." +irr-pilot-191,covidlonghaulers,2026-03-13,comment,,"[Parent post: Mystery virus put me in a bad long Covid fatigue flare up: help.] + +Hey guys about 15 days ago I came down with a mystery virus. I tested negative for everything. I had pretty bad bronchitis for about ten days. Finally the coughing is almost gone. I am still coughing up clear mucus. Most of my viral symptoms are gone, and now I am left with this extreme fatigue. I am so exhausted. I can barely do anything earlier today. I was taking a shower and I felt like I was gonna blackout how long until my baseline gets better. This shit is so stupid. I hate it for reference. I have a mild baseline right now. I feel like I’m in hell with the capital H.",Same here since early January bout of the flu. It triggered long covid related deusotonomia. I've been struggling for the past month but have been trying to fight with protein and salts. +irr-pilot-192,covidlonghaulers,2026-03-12,comment,,"[Parent post: Dream Team Peptide Stack for LC] + +Disclaimer: Not medical advice, just my personal experience for the past few weeks. + +Hola, my LC family. Thank you all for keeping me sane these past few years. This illness can be incredibly isolating and I am glad to have access to this community in what has undoubtedly been the most trying time of my life. + +Just wanted to drop in and share what’s been working for me for the past few weeks. + +From left to right: **Tirzepatide, Thymosin Alpha 1, TB-500, KPV, MOTS-C, SS-31, NAD+, GHK-Cu, BPC-157, and Epithalon.** + +Tirzepatide has definitely been a game changer. I think it has improved my mitochondrial function and lowered inflammation which is allowing everything else in my protocol to work better. + +If there is enough interest here, I can elaborate further on what my rationale has been for using these peptides, and the specific protocol I am following. I will also be posting about all the supplements, medications, and other treatments I have tried. + +My condition has improved so drastically that I have been going on 90 minute bike rides without crashing. In fact, I went on two such rides in a 12-hour window today. Brain fog has mostly elevated, and I feel hopeful for the future again. + +At one point, I was bedridden for a couple of months so it feels like I am coming back from the dead. + +Anyway, hope this information helps somebody here. Don’t hesitate to DM if you have questions. + +Wishing everyone peace and great health. Hang in there! 💪","What’s your current dosage on these peptides, I’ve been taking the same except not epithalon and Reta instead tirz, been wondering if I should up my dosage." +irr-pilot-193,covidlonghaulers,2026-03-23,comment,,"[Upstream reply] +I am severe too. Cant walk. Leg weaknesses are my only symptoms but it has become extremely bad in 14 monthes, from walking unlimited to bedbound now after 4 severe crashes the first one on cycling. +I took it 3 monthes but i started low 0.5 mg for 2 weeks then 1 for 2 weeks etc till 4 mg for 2 weeks, 4..5 1 week, 5mg 1 week last friday. I should take 5 mg today but i decided to stop i think. I dont see the benefit. I am on huge crash for à month, probably not related though . +No idea if it should show benefit in such a time. +Would be also interested by others expériences. +On which profile is that wirking ? +I am ""purely"" métabolic, muscles + +--- + +[Upstream reply] +Double-Both rapamycin and maravoric have improved the frequency (less) and severity (less) of my leg muscle weakness. It is still a problem, but less handicapping than it used to be. I wrote above more about my experience with rapamycin and about how I evaluate whether a drug works or not. Also, my rapamycin dosing is much larger than yours, my dosing is daily rather than weekly (presently 2mg/day). More info in my previous comment. + + + +\*\*About the symptom/experience of leg weakness and my experience:\*\* + +\*long post but looking for response about leg weakness experiences-will post as new topic\* + +When people write 'leg weakness' it always catches my attention, because that is such a prominent symptom for me, and it is so hard to describe to others - to friends, but also to docs/health care providers who are not familiar with ME/CFS or long covid patients. I still struggle to explain it. + +\*\*My experience:\*\* I feel the weakness most profoundly in my quads. On a good day (during the present year), I can go out for a 2-3 three mile brisk walk (hooray!), but at the end of the walk I arrive home at the one flight of stairs up to my apartment - and my quads just say ""no!"". I end up doing one step at a time, slowly, to get up the stairs, demanding to my quads that they must work, feeling like I am climbing stairs through quicksand. I would also have the same experience if I came to a flight of stairs in the middle of my walk. Other days, I have little issue with stairs, occasional days I can bound up the stairs. + +Earlier in this disease I would have the same experience type of experience standing up from sitting in a chair - the quads just say ""no!"". I would have to use upper body muscles to help push myself up. And the next day, I don't even think about standing up, it happens no problem. I have times of muscle weakness in other areas of legs and body, but always it is the worst with the quads. When things were really bad, I could evaluate my prospects for the day ahead simply by observing my struggle to stand up as I got out of bed in the morning - worst case scenario was being physically unable to fully stand up (and having to drop back into bed) - best case scenario was just standing right up 'normally' with no extra effort, no extra willpower, no leg pain (like a normal person). Fortunately the worst case scenario rarely happens now, but if I do really struggle with the morning stand up, I know I have a difficult day ahead. This strange leg/quad weakness tends to cycle somewhat with my other symptoms, so it has become alert system for me. + +Inexperienced docs/health providers immediately think it is 'deconditioning' or 'fitness' and loss of muscle bulk and strength.. Which it absolutely is not. I am a former competitive cyclist, and I know my leg muscles pretty darn well - we are on a first name basis and we talk regularly. I have plenty of muscle bulk available to get me up a stair. I don't have the 30"" thighs of my bicycle sprinting days, but I have plenty to get out of a chair or up a flight of stairs. Also, on some days there is no issue - quads work normally. But other days they just refuse - I cannot access the strength that should be there. It is so strange and hard to explain - and so frustrating - because this leg weakness is such a prominent and handicapping symptom for me. If the person (or doctor) I am talking with has a background as an athlete, I seem more understanding happening. + +I am a science guy, but not a biologist. I know there is something basic, physiologically, going wrong with these muscles. It is not psychological; it is not fitness or deconditioning; it does not seem structural or neurological to me. There just is something fundamental to normal muscle contraction that is going wrong. And whatever it is, there is substantial day to day variability in the problem. It puzzles me, but I have nowhere near the background in biology/medicine to even intelligently speculate as to potential causes. + +Because I have always been an active physical person, and ex-athlete, someone who gets much joy from my sports and activities throughout my life (I am in my 60's), this particular symptom really hits my heart as well as my legs. I would love to hear from others about their experiences, and for those better educated than me, I would love to learn more about the science involved and any relevant research that has or is happening focused on this problem.",I have same but much worse and it is going worse for the last 14 monthes. Mostly calves for me. How did you see if Rapamycine works ? +irr-pilot-194,covidlonghaulers,2026-03-13,comment,,"[Parent post: LDN (Concerned to try)] + +My main symptoms are fatigue, PEM and some dizziness. Nervous system is out of wack too at times. This has been going on for about 14 months. + +I just got LDN. Is it worth it and tell me your experience?","I started almost two months ago. In that time it's taken me from mostly housebound to being able to go grocery shopping plus excursions for fun within the same day, without getting PEM. My biggest improvement is physical, but I also am a little more resistant to noise and such, and my mental processing power has increased a bit. + +I started at 0.25mg and have titrated to 1.5mg (0.25 -> 0.5 -> 1 -> 1.5 about every 2 weeks). As side effects I got some unusually vivid dreams (plus one nightmare) and more physical pain when it kicks in at night. The first night it felt like a filter masking my pain had been removed. By now I only notice it for a few days when I increase the dosage. + +YMMV, but I'm really really glad I tried it." +irr-pilot-195,covidlonghaulers,2026-04-06,comment,,"[Parent post: Self-experimenting vs doctor/medical field…] + +I’ve pretty much given up hope that I’ll ever have a doctor who can and will help me with this stuff. Basically everyone who hears me say long covid runs for the hills. The medical gaslighting, cost, and logistical nightmare of it all is so bad. + +Like most people here, I’ve done more research on all these concepts than any doctor I’ve spoken to. I can’t trust my health to some doctor who clearly doesn’t know what I’ve been studying for the past 5 years, and who doesn’t care or listen. I’m still in rough shape. I don’t have the spoons to jump thru hoops like that. + +But there’s a ton of things that you can’t reach unless you go through the system. I found ways to get labs done and some simpler meds but that’s about it. I know ivs and hyperbaric would help but I need a doctors sign-off to try it. Id like to try a couple scripts like LDN that more and more official channels are naming for LC. + +Is there any way to get access to care that doesn’t require enduring the abuse and spending ridiculous amounts on tests for things I’ve already ruled out? + +Any corner of the medical system that is not built this way? + +Has anyone else found a way? I’m really running out of hope and patience. + +Appreciate any advice y’all. Love n healing🫶🏼","Really depends on your corner of the world. If its social healthcare then the answer is almost certainly no, otherwise in the USA with privatised healthcare if you have the money to just pay for whatever you want you can find someone to do it via the concierge doctors." +irr-pilot-196,covidlonghaulers,2026-03-25,comment,,"[Parent post: Just curious to know how long you’ve been living with LC] + +The more and more I read, articles make it sound like most people with LC only suffer for weeks to months after; but I’m in groups where people have been suffering for years… I’ve been sick with LC since 4/2020 after my first and worst round of it. I’m better than I was, but still have days (like today) where I feel completely awful. I went from being completely healthy, to now seeing 6-7 specialists. Just looking to see who else is in the same boat.","Every year my world shrinks and my body hurts in new ways. I go to doctors. I get tested. Deficiencies and dysfunctions abound. Nothing helps. I don’t belong. I have no purpose or meaning + +Just keeping it a hundo" +irr-pilot-197,covidlonghaulers,2026-03-21,comment,,"[Upstream reply] +Just to add to this, the dose you’re taking isn’t going to do anything. You need to get up to 4.5. And take it before bed. That’s very important. + +--- + +[Upstream reply] +I'm at 7.5mg and have been for a year or so. I wanted to know if ""more is better"" and the answer is. Yes, but its so marginal in the grand scheme of things. I was already at 6mg for like a year berforehand. Getting my PCP to approve the slow dosage increases by trail was a pain because he isn't the original prescriber.","I’m considering more. I think the general consensus is once you start having insane scary dreams and sleep issues that you’ve hit your max tolerance and that’s your cap. I haven’t hit that yet. What LDN helps me with the most is fatigue. I wake up refreshed with no muscle fatigue or heaviness. Without it, I’m a waste and can hardly move around. It’s literally the only thing I’ve found so far (and I’ve tried just about everything) that helps at least one symptom." +irr-pilot-198,covidlonghaulers,2026-03-12,comment,,"[Parent post: Taurine supplementation as a therapeutic strategy for cellular senescence and chronic inflammation in long COVID: a systematic review and meta-analysis - PubMed] + +--- + +[Upstream reply] +This is significant and I thank you for sharing. +Any taurine-takers care to validate their own experience vs the literature?","From all of the supplements I have tried I think taurine is the one that does the most. I feel much better when I take it. It helps me with anxiety, fatigue and a little bit with muscle weakness" +irr-pilot-199,covidlonghaulers,2026-04-07,comment,,"[Upstream reply] +I saw him a few years ago. don't waste your time or money. he also uses AI to write all his FB posts and only tells you to buy his overpriced books which don't tell you anything you don't already know. I used to believe in him but he's just like the rest of them to claim they can help. + +--- + +[Upstream reply] +That may explain the grounded and brilliantly articulate explanations of long covid mechanisms on his FB posts. I noticed he rarely mentions solutions, if at all…. I turn to other sources to gather solutions","He never mentions solutions or offers any suggestions, protocol, etc in the comments when people are literally begging for a glimmer of hope or something they can try immediately for relief. I stopped following him." +irr-pilot-200,covidlonghaulers,2026-03-12,comment,,"[Parent post: LC symptoms ease when I’m sick. Or am I crazy??] + +Every time I get sick (not a crash), it feels like my LC symptoms kind of fade to make room for the symptoms of the illness. + +Is that possible, or do the illness symptoms just overpower them? + +Am I the only one? + +If not, why might that happen? + +Any comments are welcome",This happens to me too. When I have Covid I had more energy than usual and over do it and then I’m down for months +irr-pilot-201,covidlonghaulers,2026-03-29,comment,,"[Upstream reply] +For the congestion, you might try steroid nasal sprays.  + + +I suffered a reduction in taste and smell that did significantly improve, but it was never totally been to normal. I missed the subtleties in food that I used to taste.  + + +But right now I'm participating in a clinical trial of HBOT therapy. I'm about halfway through the trial and suddenly my senses are becoming sharper again. It's really amazing! I am delighted. I just hope it sticks around after the end of the trial. + +--- + +[Upstream reply] +I’ve tried budesonide and Flonase and nasonex and they did not work 😭. . I also tried them with a nasal antihistamine which also did not work. Ooo that sounds promising. Hopefully that ends up working out for you!!",I had similar issues to you and it wasnt until I used Ryaltris that anything helped. It didnt fix it but fairly better. Also NAC twice a day. +irr-pilot-202,covidlonghaulers,2026-04-04,comment,,"[Parent post: Coq10- Now I Know] + +I've been taking Coq10 for awhile, but I've never been quite sure if it was having any effect. Still, I figured I'd finish the bottle, since I already paid for it. + +Well I ran out a couple days ago and wow it was definitely doing something. I'm so exhausted and I can barely get out of bed or even stay awake! I guess I need to go get more Coq10 ASAP.","I'm trying Coq10 again because it was on sale. I purchased the highest dose available, 400mg. + +I tried it in the past and lower doses and it didn't help at all. I tried various brand names too. I always finish the bottle too, I don't like to waste it even if it doesn't change anything." +irr-pilot-203,covidlonghaulers,2026-03-13,comment,,"[Upstream reply] +OP, + +Happy for you! + +Can you pls update your post to elaborate on: + + +1- which subtype(s) of LC you categorized yourself + + +2- did you take these under the supervision of a doctor + + +3- where you source the peptides from + + +4- your regimen: + + + - how frequently you take each, + - is there a sequence of peptide intake you follow + + +5- how much this cost you per month + + +6- how long you’ve been on these peptides + +--- + +[Upstream reply] +Thank you very much. I hope the changes sustain. + +Great questions. I will do a detailed post very soon and will go into depth on these questions and other aspects soon. + +Trying to give some basic answers here. + +1 - Honestly, I had symptoms across all subtypes at different points in time. Brain fog, dyspnea, fatigue, skin issues and digestive issues have been my main issues. + +2 - I am taking these under the supervision of a doctor in my family. My experience with doctors in the country I am in has been disappointing. There is almost zero LC awareness, let alone treatment options. So I have had to research a lot and get anything new I want to try approved by my family member. We do regular blood tests and I track as much health data as possible to manage risks. + +3 - Not sure I can share sources here but please feel free to DM for this + +4 - These are my current doses: + +Tirzepatide : 0.5 mg/dose (1 dose per week) (Currently running indefinitely) +Thymosin Alpha 1 : 1.5 mg/dose (2 doses a week) (Running for a total of 12 weeks) +TB-500 : 1 mg/dose (2 doses a week) (Running for a total of 12 weeks) +KPV : 200 mcg/dose (Daily) (Running for a total of 12 weeks) +MOTS-C : 500 mcg/dose (Daily) (Running for a total of 6 weeks) +SS-31: 1.25 mg/dose (Daily) (Running for a total of 12 weeks) +NAD+: 100 mg/dose (2 doses a week) (Currently running indefinitely) +GHK-Cu : 2.5 mg/dose (5 doses a week) (Running for a total of 8 weeks) +BPC-157: 500 mcg/dose (Daily) (Running for a total of 8 weeks) +Epithalon: 500 mcg/dose (Daily) (Running 10 days on, 10 days off for a total of 6 weeks) + + Not following any particular sequence, just trying to stick to the routine. Is there an ideal sequence you're aware of? + +5 - Currently setting me back $740/month + +6 - Been on them for 3 weeks + +7 - Have had LC for around 5 years now, but it really kicked into high gear in 2023 + +8 - Taking a bunch of supplements, mostly for vascular and mitochondrial health. Can share those in a detailed post. Also taking high dose Vitamin D, Omega 3 and a few others as micronutrients. + +Hope this helps.","I'd like to hear about supplements, too. I don't know if you are adding things one at a time and have a sense of what is making a big difference vs less clear." +irr-pilot-204,covidlonghaulers,2026-04-03,comment,,"[Parent post: Blood brain barrier antihistamines?] + +antihistamines help my symptoms a bit but I'm still dealing with brainfog. do you find that antihistamines that cross the blood brain barrier helped clear spike proteins or whatever else out after taking them for a period of time? I'm only terrified of the dementia risk. I'm currently taking ones that do not take the blood brain barrier. I just want to get that ""gunk"" feeling out of my head. + +--- + +[Upstream reply] +Benadryl helped me more that cetirizine and loratadine","Benadryl I took often in 2021-2022 and I wonder if it helped me or made me worse, my symptoms were more milder then. Thank you!" +irr-pilot-205,covidlonghaulers,2026-03-13,comment,,"[Parent post: Fecal Transplant] + +Given that many of us have gut dysbiosis. + +Has anyone tried fecal transplant? + +--- + +[Upstream reply] +I’ve had a fecal transplant! +Post-covid I was dealing with a ton of recurrent gut issues, including but not limited to indigestion, pain, and diarrhea. I developed acute diverticulitis, which they basically told me was unrelated to my other issues (lol) but after months of fighting various issues I finally got diagnosed with c. diff. + +I just want to mention that any time I went on antibiotics, I felt better. My overall LC symptoms, including neuro, all got better on antibiotics. Then I would come off of them and the symptoms would get worse again. Nobody ever really could explain why and everyone chalked it up to placebo. But I felt better than I had in years while on antibiotics. Every time. With 4 different types. + +After multiple rounds of this, a colonoscopy that showed I actually had practically no diverticula and no colitis, and recurrent attempts to treat the c diff, I was approved for Vowst FMT. + +What the FMT did do: got rid of my c diff, helped my IBS-D symptoms, allowed me to *eat more foods without issue,* possibly helped my malabsorption, improved my baseline and energy a little; I also gained an inexplicable 20lbs I did not need or want post FMT + +What the FMT did not do: cure me, eliminate all digestive problems, or have much of an affect on my neurocognitive issues. + + +FMT improved my quality of life because I was dealing with cyclical dysbiosis, inflammation, and eventually c diff colonization. I have had almost zero lower GI issues since my FMT just over a year ago, which is nice. But I still suffer from the ME/CFS type symptoms.","I also originally did FMT for Cdiff. I was considering it for ages for my LC, but was on the fence until 2 years ago when I got Cdiff after being treating on IV antibiotics for Lyme. Sadly FMT induced MCAS and food intolerance. The donor was screened and safe, and no one else who had that donor had that reaction. I think because I had pre-existing Long Covid I was susceptible to a really terrible terrible reaction, and I’d caution anyone considering it with this specific disease." +irr-pilot-206,covidlonghaulers,2026-03-13,comment,,"[Parent post: Long Haul Fasting with Long Haul Covid] + +I had an interesting experience with fasting recently. I often do intermittent fasting with no issue, but decided to do a 24 hour fast a few days ago just to see how it felt. + +I stopped eating at 7 pm and planned to eat the next day at 7 pm. + + +I felt very good until the evening. Because one of my clocks was wrong by an hour (???), which I discovered later that evening, I accidentally fasted for 25 hours. + +I am glad this happened, because something odd happened. At about 24 hours into the fast, I swear almost to the minute, my legs starting having weird vibration feelings. This always happens when I over-exert myself. This is my major sign of PEM. + + + +Later I learned that autophagy kicks in at 24 hours. + + +Anyway, I don't know if this is a good or bad thing. I am hesitant to try again, but at the same time, intrigued by the power of autophagy. + +--- + +[Upstream reply] +\*awkward silence\*","Spermidine is really good supplement for helping you hit autophagy, just don't smell the tabs. Trust me." +irr-pilot-207,covidlonghaulers,2026-03-12,comment,,"[Parent post: Experiences with Taurine?] + +https://pubmed.ncbi.nlm.nih.gov/41803812/","part of my supplement routine. can't say I notice a direct impact, but in combination with the others, it's just that little bit better + +I started taking it because I thought if it's in red bull it must give me wings. I mean energy, but it's just helping the brain work a bit smoother." +irr-pilot-208,covidlonghaulers,2026-03-12,comment,,"[Parent post: The psychology of LC] + +When in crash/PEM: “it feels I have no life anymore” + +On a normal day: “wow feel great. the world is my oyster” + +This alternates constantly…","OMG, SOOO true. I’ve been feeling better recently. Feeling more resilient, for example, able to go to a doctor’s appointment last Friday, even drive myself (next town over), which was first time I had driven myself in over a month. I totally expected a subsequent PEM crash but I didn’t crash. Been doing very, very light recumbent exercises on floor on yoga mat (slow leg lifts) in the evening. Then today decided to join my husband for the beginning of “his” (formerly “our”) daily Noon walk. Made it to the end of the driveway and was like, “That’s enough for me today!” Getting better listening to my body. FWIW: I’m thinking it’s the LDN that I started 3 weeks ago that’s made me turn a corner. Currently on 1.5 mg. Started at 0.5 mg and increasing every 7-10 days." +irr-pilot-209,covidlonghaulers,2026-03-12,comment,,"[Parent post: LDN (Concerned to try)] + +My main symptoms are fatigue, PEM and some dizziness. Nervous system is out of wack too at times. This has been going on for about 14 months. + +I just got LDN. Is it worth it and tell me your experience?","Some people don’t tolerate it well, or have a rough time finding their correct dose. But there’s also zero withdrawal or risk when going cold turkey, so I’d say go for it. + +Didn’t seem to do a lot for me but was worth the try imo" +irr-pilot-210,covidlonghaulers,2026-04-06,comment,,"[Parent post: If you don’t mask anymore, why not?] + +Besides medical contraindications and things along those lines, if you stopped masking, why have you stopped wearing masks? As someone who is constantly surrounded by almost no one who also masks, even other LC & disabled people, I’m always curious.","I masked daily until Spring 2023, right after a COVID infection while wearing an FP3 (it got into my eyes). Since I was immune for a while (booster+infection), I took off my mask and smelled that sweet sweet freedom. + +Once I did, I realized how important smell was to my mental health. I love the smell of day-to-day life and I'm far less depressed now. + +That said, I carry several surgical masks with me always and I put it on the moment someone around me has symptoms. I wear it preemptively in grocery stores and any place with a dense population. I went to an orchestra show the other day and wore it. I wear it probably 3 days a month at work. + +And I wear it 100% of the time when I go into a pharmacy. And at the doctor. The balance works very well for me." +irr-pilot-211,covidlonghaulers,2026-03-11,comment,,"[Upstream reply] +That sounds like mast cells my friend. +I have zero allergies, no anaphylaxis, not even skin reactions. But after Covid, I started getting mast cell flares after eating, overstimulation, certain times of day, during my cycle , from emotions, from exercise and from sensory. It’s the worst. +Pepcid and compounded ketotifen helped the most. + +--- + +[Upstream reply] +Can Spring allergies trigger it? I have been off since the time change this week. Haven’t slept more than 5 1/2 hours since Sunday. Insomnia was one of my struggles when the LC was bad. So I am not sure if that was a trigger. I also seen a jump in my BP. + +Among the things I still suffer from is some insomnia that I thought I was getting my arms around before DST, and about a year and a half after I got Covid, my pulse drops pretty low at night. Not sure if it’s connected.","I’m out of my element here, not a doctor but my understanding of the broad stroke of mast cell dysfunction is that any change to the body can trigger mast cell degranulation. That could be glucose, hormone related, barometric pressure, meds, foods. And everyone is different. When my progesterone is low, my mast cells sensitivity is off the charts. Reacts to every change." +irr-pilot-212,covidlonghaulers,2026-03-12,comment,,"[Parent post: SGB is what made me return to normal] + +Hey all! + +It seems that most people who spent some time on this sub disappear without a word when their battle with LC is won, which furthers the conclusion that most people with LC are damned to suffer it if not for eternity then at least an unimaginably long period of time. I know that even though I assumed that in my case it will be somewhere between a year and two, there was a large part of my brain fearing that this might be far too optimistic. + +So, I decided to write this post given that after a 9-month battle I’m so far 8 days fully symptom-free after an SGB procedure. My symptoms in recent times were fatigue, inability to walk for longer than 30 minutes without crashing, slight brain fog and slight hear beat fuckery (though the last two vastly improved in the previous \~2 months). I had the right side done, given data from this study [https://pmc.ncbi.nlm.nih.gov/articles/PMC12374758/](https://pmc.ncbi.nlm.nih.gov/articles/PMC12374758/) + +Duration of improvement + +Hours: 5.8% +Days: 9.6% +Weeks: 3.8% +Months: 23.1% +Persistent improvement: 13.5% + +Rated change in symptoms + +Much better: 21.2% +Better: 17.3% +Slightly better: 7.7% +No change: 34.6% +Slightly worse: 13.5% +Much worse: 5.8% + +I was super curious and well, excited, since based on my symptom combo it seemed like this procedure could be quite a decent choice… and yeah, it definitely was. In most of the stories about sgb in the context of long covid the effect is usually gradual, and becoming stronger on the day afterward, whereas in my case I basically didn’t feel any LC symptoms right after the procedure, and did experience an intense sense of calm. I was monitored for 30 minutes, then walked to my parents home and didn’t feel any of the fatigue. Since then been slowly starting to introduce more movement - tried a 1.5h walk, 2 days ago did exercise with weights for the first time in like a year, and so far 0 LC symptoms. + +Whether it’s permanent or not, we’ll see, but if not, then definitely gonna schedule additional SGBs. Will it be a cure for everyone? No, it seems that more people experience improvement than outright elimination of LC symptoms, based on very limited studies ⅓ of people notice no change whatsoever, and some experience worsening (in other studies the % of those who experienced worsening were more optimistic, but they were done on small number of people as well), but there’s also \~ ⅓ chance of the effect lasting either months or permanently. + +Also, in the studies I’ve read about usually only the local anesthetic was used, and no steroid afterward (unlike in SGB for pain), but in soooome cases the steroid was used as well, and based on results it didn’t seem clear which one is better, so I asked the doctor and he was in the pro-steroid camp. I don’t remember the exact explanation but for some reason it was supposed to lengthen the effect, so I had a steroid included as well - adding this bit just because I know that the most popular SGB protocol for long covid doesnt use the steroid (which admittedly does seem to have a high success rate). + +If you’ve got any questions regarding the process let me know, and I wish you all a quick return to health! + +--- + +[Upstream reply] +Happy for you. Don't want to pull you down, but 8 days is not a long time. If SGBs work, they can do so for months, but they are not considered curative.","I appreciate that - honestly if the effect lasts for 1 month i'd be super glad with this outcome, wouldn't mind having to do it every once in a while" +irr-pilot-213,covidlonghaulers,2026-03-13,comment,,"[Parent post: Panic attacks on tirzepatide?] + +Anybody on semiglutide or tirzepatide experience huge increases anxiety and panic attacks? + +I’ve had tremendous success with reducing my overall pain and inflammation with tirzepatide. The last batch I ordered seemed to cause both me and my girlfriend huge increases in anxiety. I usually only do 0.5mg per week but I increased it to 1mg per week and we bought from a new supplier. So idk if it was the quality of the tirzepatide or the dose that caused this. + +Is anyone else experiencing the same thing?",Yes. Between weeks 4 and 8 I had a massive uptick in anxiety. Thankfully the folks on r/zepbound assured me it is temporary for most people so I stuck it out. Now after 14 months of being on zep I am in the best place mentally and physically I have been since well before the pandemic started. +irr-pilot-214,covidlonghaulers,2026-03-12,comment,,"[Upstream reply] +Look into MCAS, sources I think are in this sub headlines or just look at posts. Mastcell Activation Syndrome is very common in long haulers, it's basically this cell (that you know from seasonal allergies cause it produces histamines and that why you take antihistamines in spring) that conveniently degranulates as a response to constantly being ' on ' thanks to signalling and stress from covid/pfeiffer and happens to not only produce histamine but also 300? 1000? other chemicals that release into your system and wreck total havoc. From food allergies to nerve jolts to brain fog to anxiety to rashes to gut issues. Constant low grade inflammation will eventually lead to systemic fatique and can lead to me/cfs. MCAS drains you of energy and can even cause PEM fatique, that literally damages your mitochondria. It sucks. But yeah so that's why most protocols for long covid start with taking antihistamines H1/H2 and a mastcellstabilizer like ketotifen, sodium cromolyn in combination with low histamine diet (sources: mastcell360) and natural stabilisers like quecertine or lutoline. Light and sound sensitivity and being unable to read or watch a screen? MCAS too. I have been doing great on ketotifen and quecertine this past year, take a while to get used to but greatly improved quality of life. Read up on it, it's a lot to dive into. + +--- + +[Upstream reply] +I’m literally screenshotting this for my Dr, & anyone else that needs me to try & explain…again… my diagnosis is only recent & I’m going everything I can to help myself (Drs are overwhelmed) & this is super helpful. THANK YOU 🙏🏻","No problem! It's been 4 years for me of which the last one I have been at a longcovid clinic that used the be a me/cfs experise clinic. That's were all this information comes from! Thanks to them I am on ketotifen and recently calcium akg (for me/cfs). Didn't know for years what MCAS was and was suffering like so many. COVID, pfeiffer, mcas, pem, mito damage, I had the whole package all this time. I took a break from these subs cause of the suicide posts, you know, it's intense sometimes. But once you know about MCAS you recognize it in so many posts and stories, very distinct profile and exactly why it's nr. 1 treatment after nicotine patches (for ace-2 receptor). But yeah I certainly get ' smile and nod ' vibes from everyone I try to explain it to, it is what it is. I wish you health❤" +irr-pilot-215,covidlonghaulers,2026-03-13,post,Officially changed my flair to 6+ years,,"FML but also it gets better. + +From healthy non pre existing conditions to severe to now mild neuro LC. No démonstrative damage on imaging/blood work. + +Why? Mostly privilege — good insurwnce, in major US city, family money, supportive family/friends, free housing with family, medical background, ability to radically rest, multiple family members with this for decades. Also pacing, great migraine pharma, acupuncture. + +Solidarity my people ✊" +irr-pilot-216,covidlonghaulers,2026-04-02,comment,,"[Upstream reply] +I was going to wait a while to post but since you asked I thought I would give an update. I have had long covid for 3 years and 3 months. My symptoms are neurological-head pressure, eye pressure, tinnitus, loss of taste and smell, insomnia and brain fog. +I started taking 0.5 mg. of LDN two weeks ago. All of my symptoms improved dramatically. I started noticing improvement after 3 days. It's early but it is the only thing that has helped me and I take all of the supplements that are often suggested. I will continue taking LDN to see if my improvement continues. + +--- + +[Upstream reply] +No pem?","I have PEM and had a similar response to LDN. It didn't touch my autonomic symptoms but within a couple weeks I went from completely housebound to being able to comfortably walk around my neighborhood, go shopping, out for dinner etc. Three years after starting I am still firmly moderate and do experience PEM, but it definitely improved my baseline." +irr-pilot-217,covidlonghaulers,2026-03-20,comment,,"[Parent post: What the hell is PEM even!?] + +It’s the only thing that completely destroys me. I can handle the vast majority of symptoms but it’s PEM that tips me over the edge every single time and makes me realise in chronically ill. Is it some kind of permanent damage in my body? What is it even!? Like it’s painful in the worst possible way. It’s hell. + +--- + +[Upstream reply] +There's speculation that there's something wrong in the mitochondria of our cells that inhibits energy production and repair. So in normal people, when they exercise, lots of systems take minor damage, and that damage cues their body to build back better, making them stronger. Our bodies struggle to even repair that damage, and often do an incomplete job of repair, leaving us weaker.","It’s not speculation. There’s numerous studies characterizing mitochondrial dysfunction, and also how COVID causes mitochondrial dysfunction. + +My personal experience is that I was able to measure and gain insight on PEM by using lactate meter to indirectly measure mitochondria. While doing that I started on Truvada and ended up getting back to normal in a matter of days, which was reflected in the data. More here: https://www.reddit.com/r/covidlonghaulers/s/FZhqVC5O2T" +irr-pilot-218,covidlonghaulers,2026-03-21,comment,,"[Parent post: If i eat steamed+raw veggies and fruits and potatoes for 4 days i feel 10x better] + +So i don’t know why or how this works. It could be the histamine, could be that I’m lightly fasting just because it’s not as calorie-dense. But wow. Everytime I feel bad I come back to this. Anxiety, tremors, energy, but also depression, PEM, sleep, it all gets so much better. I add nothing else and eat everything fresh. So no salt, oil, nothing, just potatoes/sweet potatoes, salads, and lots of fruits, bananas, etc. And lots of water (i add lemon in it). I just wanted to share in case this is helpful for someone or for someone to put the pieces together. + +Honestly mindblowing everytime. I’m currently doing this for 10 days, then i’m switching back to more normal foods. Everytime the improvements last quite a while after doing this, so I’m committing to just doing this every few months.","My potassium is high and B12 and calcium I don’t know what to do to make it lower I have sensations all over my body 24/7 almost 5 months not working I have to force myself to work soon coz of the bills ,If I only have like $ 200 thousand in my pockets 🤞🙏🏽 I’m not gonna go back to work ,I’m worried about my health it’s almost 4 years now and it’s getting worst 😢😢" +irr-pilot-219,covidlonghaulers,2026-03-12,comment,,"[Parent post: I think a fellow long hauler I met here committed suicide] + +We've been talking for years. + + + +Last messages yesterday were speaking in the past tense. Defeated. + + +Even if he didn't succeed, he seems set on it. We're so similar. + + +I feel very flat & disconnected. I've been heavily ruminating on suicide for months & gave up in many ways months ago. + + +I thought he just posted about having another kid.","I'm one of the og long-haulers, Feb 14 2020 infection date. + +not allowed to give up! + +I just spent about 6 hours learning what [Claude.ai](http://Claude.ai) can do to help me re-evaluate my conditions and find missing supplements to get this recovery rolling again. + +A year ago, I didn't have the energy or brain capacity to be looking at Claude, but with benefits of pyridostigmine I am back on the mend..." +irr-pilot-220,covidlonghaulers,2026-03-12,comment,,"[Upstream reply] +hey! did you have MCAS? i dm’d you. 🥹 + +--- + +[Upstream reply] +I still have some MCAS type symptoms, but they seem to have mostly subsided. If I push myself too much physically, mentally or eat a carb heavy diet, I get itchy skin, head pressure on one side and feel slightly fatigued along with brain fog. However, it is nothing comparable to the issues I had been dealing with for the past 4 years.","im glad you are doing better!! i started TB500, BPC157, Epitalon, MOTS-C and NAD+Glutathione. i’m afraid to start Tirz, i heard mixed opinions.." +irr-pilot-221,covidlonghaulers,2026-03-19,comment,,"[Upstream reply] +Off topic, but I have to ask . . . you don't think reddit uses hashtags, do you? What's with the #'s? + +--- + +[Upstream reply] +Read the first line of the narrative again, starts with Since.","I did before commenting. The hashtags would make sense if OP just copy/pasted all the text from Twitter, but that first line makes it clear they didn't: ""Since this took off on Twitter, I’m gonna share it here too because Reddit . . ."" Any text that's newly-written for reddit or addressed to reddit should be formatted for reddit." +irr-pilot-222,covidlonghaulers,2026-03-12,comment,,"[Parent post: Dream Team Peptide Stack for LC] + +Disclaimer: Not medical advice, just my personal experience for the past few weeks. + +Hola, my LC family. Thank you all for keeping me sane these past few years. This illness can be incredibly isolating and I am glad to have access to this community in what has undoubtedly been the most trying time of my life. + +Just wanted to drop in and share what’s been working for me for the past few weeks. + +From left to right: **Tirzepatide, Thymosin Alpha 1, TB-500, KPV, MOTS-C, SS-31, NAD+, GHK-Cu, BPC-157, and Epithalon.** + +Tirzepatide has definitely been a game changer. I think it has improved my mitochondrial function and lowered inflammation which is allowing everything else in my protocol to work better. + +If there is enough interest here, I can elaborate further on what my rationale has been for using these peptides, and the specific protocol I am following. I will also be posting about all the supplements, medications, and other treatments I have tried. + +My condition has improved so drastically that I have been going on 90 minute bike rides without crashing. In fact, I went on two such rides in a 12-hour window today. Brain fog has mostly elevated, and I feel hopeful for the future again. + +At one point, I was bedridden for a couple of months so it feels like I am coming back from the dead. + +Anyway, hope this information helps somebody here. Don’t hesitate to DM if you have questions. + +Wishing everyone peace and great health. Hang in there! 💪",I’ve taken %70 of these peptides on screen and TA1 only helped my mood and calmness. Me and my brother took tirzepitide and we felt like our death bed was around the corner. I don’t know what to do. +irr-pilot-223,covidlonghaulers,2026-03-31,comment,,"[Upstream reply] +I am not - they put me on Effexor and I’ve been on it for 2 weeks, having a bit of muscle twitching after a panic episode, but I’ve been feeling much better. + +--- + +[Upstream reply] +I have effexor as well. Been holding it off because I am afraid of the side effect. Any side effect? How long before it starts to work to u? Tbh, I am still taking the damn tramadol for pain so I can eat without vomiting. Pretty sure i can't take it forever. Looking for better alternative.","I didn’t take anything for pain - Effexor has definitely helped. I’m still sore from having chronic tension for months, but it’s getting better. It helped the brain fog 10 fold." +irr-pilot-224,covidlonghaulers,2026-04-09,comment,,"[Parent post: Possible explanation for long covid pathology] + +I have a scary hypothesis about one of possible causative pathways of Long Covid dysfunction, and I hope you can show how I'm wrong about this. + +We know that covid infection causes rats to become unable to process nanoparticles (NPs) which includes mitochondrial wastes, viral particles, and micro/nanoplastics: https://pubmed.ncbi.nlm.nih.gov/38803494/ + +So I went digging into how this process works: + +* **Nano paticles are in us**: Human bile is a reservoir for microplastics, meaning NPs get excreted into the intenstines and can pass with our feces: https://www.news-medical.net/news/20260406/Study-reveals-bile-as-reservoir-for-microplastics-in-humans.aspx + +* **Covid can allow NPs into the blood through gut damage**: +Intestinal permeability increases due to Covid infection, which may be a vector for additional ingestion of NP into the blood: +https://pmc.ncbi.nlm.nih.gov/articles/PMC7494274/ + +* **Covid can allow NPs into the brain:** +Blood-brain barrier permeability goes up during covid infection, allowing NPs to enter the cerebral fluid: +https://pmc.ncbi.nlm.nih.gov/articles/PMC10753064/ + +* **Long Covid causes poor glymphatic drainage, slowing clearance from the brain**: Long Covid associated with dysfuntion of the glymphatic system, which is responsible for cleaning cerebral fluid: https://pmc.ncbi.nlm.nih.gov/articles/PMC11921593/ + +* **NPs cause dysregulation of microvesicles, slowing clearance from cells**: NPs can bind to TIM4 receptors, which then blocks their action. TIM4 receptors are responsible for forming the vesicles that clear NPs, and when they are not functioning they cannot clear ceullar wastes effetcively. They also seem to be one trigger of the “cytokine storm”: https://www.biorxiv.org/content/10.1101/2023.11.19.567745v1.full + +* **NP’s can alter the immune system**: Micro and nanoplastics can alter the immune system, something we’re seeing in covid damage: https://www.mdpi.com/2673-5601/5/4/52 + +* **NP’s damage the cytoskeleton**: NPs can alter and damage the cytoskeleton, very similar to post-covid damage: https://www.longdom.org/open-access/active-cytoskeletal-networks-in-intracellular-transport-and-organelle-positioning-1104658.html + +* **NPs can trigger MCAS**: Positively charge microplastics can bind to the MRGPRX2 receptor on mast cells, and may be causative of Mast-Cell Activation Syndrome (MCAS): https://www.biorxiv.org/content/10.1101/2023.11.19.567745v1.full + +* **NPs enter through the nasal & intestinal nerves**: The vagues nerve and olfactory bulb are confirmed as primary “entry highways” for microplastics and nanoplastics. This can lead to gut dysbiosis and: https://medcraveonline.com/JNSK/JNSK-16-00647.pdf + +* **NPs bring friends**: NP’s act as “trojan horses” for lead, mercury, and PFAS: https://www.researchgate.net/publication/401313740_Health_impacts_of_micro-_and_nanoplastics_in_humans_systematic_review_of_in_vivo_evidence + +* **Long Covid mineral deficiencies**: We know Covid infection can cause mineral deficiencies in at least: Magnesium https://pmc.ncbi.nlm.nih.gov/articles/PMC9965430/ Iron https://pmc.ncbi.nlm.nih.gov/articles/PMC9694355/ Zinc, Selenium, Copper, Calcium, and Phosphorus https://pmc.ncbi.nlm.nih.gov/articles/PMC9101904/ + +All of these minerals are key for cellular function, especially in terms of immune function and clearing metabolites and other NPs. + +My hypothesis is that a failure of the body’s clearance pathways, and an overwhelm of nano particles, is possibly the main causative agent of Long Covid. + +Which would indicate that Long Covid is at least in part a ""Nanoparticle Disease"" and the beginnings of the nanoparticle crisis is upon us. With Covid spreading out of control and making variants all the time, and damage can build with each infection, the consequences are staggering. + +This really scares me. Please tell me how I'm incorrect.","I partially agree. I would argue plastics per se isn’t the biggest NP offender driving long covid pathology though, as post viral syndromes have been documented long before plastics filled our environments." +irr-pilot-225,covidlonghaulers,2026-03-13,comment,,"[Upstream reply] +First round, xray showed nothing but enlarged bronchial airways and enlarged heart. From stress of sickness. I took doxycyclin and took about 25 days to get better. + +Great for a week. + +Got again, knew it was the same thing cause I have the MHPV rash on my chest and chin. + +Did a teledoc and told her all this. She said here is prednisone and Clathromicyn to make sure it doesn't go into infection. Go see Dr as soon as you can. + +Call my reg Dr and got an appointment tomorrow morning. + +Check if you have the rash. Not everyone does. You can Google images. + +Anytime I talk to a Dr, I really try to have all my ducks in a row. + +These are my symptoms. +Listen to what Dr says +If I think different or research says different, then ask. +Most the time it lines up. +Then always follow up with my reg Dr. + +My go to is teledoc. DR+ to be exact. I have used them probably 100 times over 3 years and they are fucking amazing. I have maybe had a handful of times that they pissed me off. 😆 🤣 + +The follow up with main Dr and tell her everything. Here in Cali there is not real same day appointments. So it is hard. Usually 3+ days out. And I fucking hate urgent care. + +--- + +[Upstream reply] +Oh my god maybe I should take my z pak? My x Ray only showed inflammation of the bronchi . I had like two x rays within 7 days apart first one was clear at the ER the Dr gave me a steroid called decadron and I felt great for like two days and then it was downhill. These last 3 days the cough is less and the mucus turned clear finally so I assume I don’t need the antibiotics. But who knows right. I’m scared if I take the antibiotics and don’t need it I’ll get worse and if I don’t take it I’ll stay worse lol. I have candida overgrowth so antibiotics make that flare up. + + +Where do you live !? I’m in Oceanside and there’s a clinic called Perlman clinic who can pretty much see you the same day … I’m sure they treat all around Cali. + + +Do you feel the antibiotics are working ? It’s so hard to even tell what we need when we have long covid on top of everything!",I am up in Fresno. I forsure needed the antibiotics. Both times. My body and immune system is so fucked. 😆 +irr-pilot-226,covidlonghaulers,2026-03-12,comment,,"[Parent post: Dream Team Peptide Stack for LC] + +Disclaimer: Not medical advice, just my personal experience for the past few weeks. + +Hola, my LC family. Thank you all for keeping me sane these past few years. This illness can be incredibly isolating and I am glad to have access to this community in what has undoubtedly been the most trying time of my life. + +Just wanted to drop in and share what’s been working for me for the past few weeks. + +From left to right: **Tirzepatide, Thymosin Alpha 1, TB-500, KPV, MOTS-C, SS-31, NAD+, GHK-Cu, BPC-157, and Epithalon.** + +Tirzepatide has definitely been a game changer. I think it has improved my mitochondrial function and lowered inflammation which is allowing everything else in my protocol to work better. + +If there is enough interest here, I can elaborate further on what my rationale has been for using these peptides, and the specific protocol I am following. I will also be posting about all the supplements, medications, and other treatments I have tried. + +My condition has improved so drastically that I have been going on 90 minute bike rides without crashing. In fact, I went on two such rides in a 12-hour window today. Brain fog has mostly elevated, and I feel hopeful for the future again. + +At one point, I was bedridden for a couple of months so it feels like I am coming back from the dead. + +Anyway, hope this information helps somebody here. Don’t hesitate to DM if you have questions. + +Wishing everyone peace and great health. Hang in there! 💪","I’m currently on all of these as well, except Epithalon, but I may try it later. Just be careful with BPC-157—it gave me anhedonia after the third cycle" +irr-pilot-227,covidlonghaulers,2026-04-01,comment,,"[Parent post: i function best starved and high lol] + +i know this isn’t healthy. i’m very aware. and im not advocating for others to do this. + +i’ve been trying to balance a very mentally challenging job (surviving grad school). + +when i’m eating as i should, im so sluggish. my brain just doesn’t understand the science. my central nervous system is fucked. i’ve tried keto, gluten free, etc. it’s like my body just can’t handle the energy required to digest food. any food. + +i started smoking weed at night to help my overactive CNS .. and it does a lot. it used to make me paranoid. now i feel artificial covid-induced CNS stress melt away. im relaxed and happy. + +when i’m sober and eating healthy i cannot get through a research article. i barely understand simple stuff. when im high and haven’t eaten all day, i glide thru the article. i have conversations about difficult topics with ease. my memory gets BETTER when im high. wtf? + +and it’s the combination of weed + no food. either alone doesn’t cut it. + + +edit: i want to preface im long hauling since 2022. i have tried almost every single piece of advice found here.","I recovered from long haul just over 2 years ago. Eating very little is the one thing to really help me WHILE in the throes of LC after 2 years of it, off and on. It was so counterintuitive. I had literally tried EVERYTHING before then. Less stressed and was able to push through the deep brain fog finally. I returned to normal eating when I felt 99.9% again. I just caught the new variant going around, nicknamed Cicada. It's been 12 days and I will restrict eating a lot if same LC issues return." +irr-pilot-228,covidlonghaulers,2026-04-02,comment,,"[Parent post: Is LDN worth it?] + +is it worth me chasing Drs about LDN. + +seen a surprisingly large amount of positive stories on here and elsewhere. lots of people difficulty when starting and increasing dosage but largely I've heard good things. + +I'm nearly 3 years in and the only mild success stories I've had so far are Magnesium glycinate and VitB2 getting rid of my initial super migranes I had the first 3 months (still have headaches, head pressure and eye symptoms) and low dose propanolol keeping my body less tensed up seems to help. + +trying lower histamine diet and anti inflammatory currently, already cut dairy and gluten out. + +taking some oregano oil and probiotics to sort out potential sibo and I've managed to get a medical cannabis (low THC high CBD) prescription il start soon but wondering if LDN could be worth it. + +also had some success with Rimegepant for migranes but was only allowed one weeks prescription because the NHS likes to push statistically more dangerous but cheaper triptans + +my symptoms are migranes, eye issues, skin sensitivity, OCD, overly sensitive nervous system, chronic pain, joint and muscle problems, gut problems and GERD, with some fatigue after exercise and sleep issues. + +--- + +[Upstream reply] +If you’re in the US and doctors won’t prescribe it, you can go through ageless RX to be evaluated and LEGALLY prescribed LDN.",How do they evaluate you? Do they ask questions about long COVID? Or do they ask for blood work? How easy is it to get LDN? Thank you 🙏 +irr-pilot-229,covidlonghaulers,2026-03-15,comment,,"[Parent post: Did famotadine/pepcid make things worse for anybody else?] + +When I get famotadine my muscle burning/lactic acid feelings get so much worse. Anybody else have this?",it did help me with symptoms but I’m pretty sure it gave me sibo because before taking it i could eat high fodmaps foods and now i cant +irr-pilot-230,covidlonghaulers,2026-03-17,comment,,"[Parent post: Doctor told me not to take CoQ10 because it could cause negative feedback in mitochondria] + +I wanted to ask if anyone here has heard this before. My doctor told me not to take CoQ10, even though I keep seeing people recommend it for mitochondrial support. + +He said it could actually create some kind of negative feedback effect on the mitochondria and potentially make the underlying problem worse. That confused me, because online I mostly see people talking about it as something helpful. + +Has anyone else been told something similar by a doctor or seen research about CoQ10 causing negative feedback or down-regulation of mitochondrial function? I’m trying to understand whether this concern is legitimate.","CoQ10 seems to help me with cognitive fatigue, and the only side effect I've experienced was sudden acid-type nausea + +(looked it up, I wasn't eating enough fat by far, you need to eat at least minimum recommended amounts of fat or you might get nauseous on it.) + +hard to tell if it's helped with physical energy, fatigue, or even PEM prevention bc i'm switching other meds right now. am supposed to double my CoQ10 dose but havent yet (still struggling to eat enough fat as is)." +irr-pilot-231,covidlonghaulers,2026-03-29,comment,,"[Parent post: How to deal with health anxiety brought on my long covid] + +I’m sure many of you probably deal with health anxiety due to long covid how do you cope? I’ve been really struggling these last 6 months it’s completely ruined my life. I’ve always suffered from general anxiety but this is unlike anything I’ve experienced it’s crippling and consumes most of my days. I don’t leave the house and I’m constantly analysing my body worried I have a terminal illness. I have a lot of nerve issues like weird sensations all over my body chest pains due to costochronditis and also IBS + +My body isn’t the same as it once was like I’m 27 I shouldn’t be like this. But the worst part is the anxiety it’s like I’m stuck in a mental prison I’m depressed and anxious all the time, is there anything you guys do that helps you?",Sending love - I’m sure I speak for a lot of us when I say we struggle with the same and we’re with you. It’s traumatic to say the least. +irr-pilot-232,covidlonghaulers,2026-03-27,comment,,"[Upstream reply] +I felt I had Lc in remission after about 3 years. I felt basically back to normal, working out again etc. like an idiot I eventually became too confident it was gone forever and I stated really pushing it. Around the 7-8 month mark of feeling I was out of the woods I started clearing out this huge warehouse that belonged to my fiancés family. Moving really heavy stuff all day long and after a couple months one day something just snapped and my body took an insane plunge back into LC or ME/CfS. I’ve been there for the past year but I’m determined to get back to remission because I know it’s possible. Living with this is total hell + +--- + +[Upstream reply] +Similar story here. 20 months of remission with no symptoms and then one week just did way too much exercise and fell back into it.","Ugh I’m so sorry, I’m sure it was devastating as it was for me. Did you notice the 2nd time some of your symptoms changed or were different or some more prominent and others less?" +irr-pilot-233,covidlonghaulers,2026-03-20,comment,,"[Parent post: Sleep is fragmented to 3 hours now, anyone else?] + +I’ve seen a lot of others complain about the same thing. Not only do I have crippling chronic fatigue, but it’s been 2 years of symptoms and over a year of not having full, entire nights of sleep. In the past year i’ve gotten blessed with probably 5 nights of 8 hour sleeping nights and I practically cry of happiness when that happens. + +I used to wake up every 5 hours, now it’s every 3 hours. I can’t take it anymore and it physically makes me feel horrible. All my symptoms throughout the day are exacerbated. I can’t find a solution on any post. I’ve had two sleep studies already with nothing found. + +Can someone provide me with any comfort of them dealing with this for over a year and you’re still alive? (I’m asking if you’re still alive because all the ones who complained about this years ago no longer post, or their accounts are deleted.) + +And can anyone give me answers if this problem was resolved? Please, i’m desperate. + +Thank you in advance, God bless!","CBT-I has helped many of my sleep issues - I fall asleep sooner and wake up less, and when I wake up I'm not awake for hours. The sleep restriction period was harsh but the results are great. I am still working on getting restorative sleep." +irr-pilot-234,covidlonghaulers,2026-04-05,comment,,"[Parent post: Must read book if you have any flavor of Dysautonomia, or any ANS related issues. (Principles of Autonomic Medicine by Dr. Goldstein)] + +This book was written by Dr. Goldstein during his tenure at the NIH and he gathered knowledge from dozens and dozens of colleagues to put this book together. It is an amazing read and really makes so much click. + +Knowledge about these conditions has given me so much power in my own illness journey. This is a trusted source and an aggregation of a IMMENSE amount of knowledge on conditions of the ANS. It is made free to download by the dysautonomia project. + +Link: [https://thedysautonomiaproject.org/resources-2/](https://thedysautonomiaproject.org/resources-2/) + +Sorry if this is widely known about here, just thought of even a few people get the answers they are looking for from it, it's work posting about. + +--- + +[Upstream reply] +😍 was it helpful with symptom management?","Well it told me what my neurologist already told me, It suggests guanfacine for my favor of dysautonomia, just haven't tried it during a flare yet." +irr-pilot-235,covidlonghaulers,2026-03-13,comment,,"[Upstream reply] +My ferritin was 8 and is now 29 which is still not great. I don’t feel very different though. + +--- + +[Upstream reply] +Seems like maybe it’s about like everything else in the sphere of long Covid treatments. Some it works like a miracle, others it does nothing, and a few get worse. Kinda why I made this post. + +Did your doctor tell you a number to aim for? Or just sort of take it and see what happens?","Doc didn’t say any number, I‘m just supplementing forever lol. I can’t take the big iron pills so it’s going sloooow" +irr-pilot-236,covidlonghaulers,2026-04-05,comment,,"[Parent post: Cognitive Fatigue (not brainfog)] + +Hi all, + +I got covid aug 2023 and my most debilitating symptom is \*cognitive fatigue\* - NOT BRAIN FOG. Every health professional I have explained it too doesn’t seem to understand this. + +I am just as sharp as ever - I don’t struggle with word finding, my memory is great, not easily confused. + +What I can’t do is watch more than 10 mins of TV. Read more than a paragraph of writing. Be in loud spaces or places with flashing lights. When I do I can physically feel like something is pressing on the inside of my skull in various different places, and if the stimulation continues I will start to feel physical soreness in my neck and shoulders. + +Every time I tell a dr - even long covid specialists - they offer me brain fog webinars - which is hilarious bc I’ve just tried to explain that I can’t do zoom calls… so I can tell from that they haven’t understood. + +I’m trying to figure out whether anyone else has this same presentation - \*cognitive fatigue without brain fog, and physical sensations in head neck and shoulders.\* +Anyone out there who can relate? How do you manage it? + +--- + +[Upstream reply] +Have you tried ldn yet? I'm not sure I was dealing with the same thing exactly, but it majorly helped me with sensory sensitivity and cognitive fatigue.",I am currently on ldn. It has not helped me in any way with sensory sensitivity or cognitive fatigue. +irr-pilot-237,covidlonghaulers,2026-03-11,comment,,"[Parent post: Low Ferretin, Vitamin D and B1] + +Has anyone that's had low levels of ferretin, vitamin D or b1 seen improvements after increasing these? + +Ferretin = 12 + +Vitamin d = 28 + +B1 plasma = 6 + +--- + +[Upstream reply] +For Ferritin I can tell you in a few days. I get my results for that back tomorrow, and from what I've heard if there is a deficiency and supplementing works, you notice pretty quick. + +Vitamin D I supplemented a lot, even over the daily recommended limit for months (on doctors orders) and am still below the recommended limit. Even after taking it properly, with magnesium and fats. Oh well. So I can't tell you if I'd feel better with more, as my body seems to refuse it. Doctor said it's probably fine, and I'm closer to normal now. + +B1 and B12 (I think those were the two) I get injections for, and I actually notice my brainfog going down significantly from those. Last time that effect lasted for a few months. I am supplementing both, and eating more meat than I used to, but without injections my levels still fall off.","Thank you for the info! It's good to know the brain fog improved with the B injections + +For vitamin D, are you taking D + K2? The Solaray brand has worked best for me in the past if you haven't tried that one." +irr-pilot-238,covidlonghaulers,2026-03-11,comment,,"[Parent post: Hard to describe feeling] + +Wondering if anyone can relate. I got Covid in May 2024 and then long Covid. It’s always been difficult identifying exactly how I felt. Fatigue for sure, along with insomnia, headaches. But these episodes where I felt like I was having some sort of episode. I can only liken it to a cross between an anxiety attack/low blood sugar sort of thing. Whole body feels off. Achy, stomach off, woozy head and try to nap it off but wake up with increase these bizarre jerk awakes and increase anxiety. + +About 15 months I started feeling better. Not my old self, but functional. But I am still subject occasionally to these episodes. Anyone know what I am talking about?bin the middle of one you almost feel like you need to go to the ER or something. Weird.","That sounds like mast cells my friend. +I have zero allergies, no anaphylaxis, not even skin reactions. But after Covid, I started getting mast cell flares after eating, overstimulation, certain times of day, during my cycle , from emotions, from exercise and from sensory. It’s the worst. +Pepcid and compounded ketotifen helped the most." +irr-pilot-239,covidlonghaulers,2026-03-15,comment,,"[Parent post: Dream Team Peptide Stack for LC] + +Disclaimer: Not medical advice, just my personal experience for the past few weeks. + +Hola, my LC family. Thank you all for keeping me sane these past few years. This illness can be incredibly isolating and I am glad to have access to this community in what has undoubtedly been the most trying time of my life. + +Just wanted to drop in and share what’s been working for me for the past few weeks. + +From left to right: **Tirzepatide, Thymosin Alpha 1, TB-500, KPV, MOTS-C, SS-31, NAD+, GHK-Cu, BPC-157, and Epithalon.** + +Tirzepatide has definitely been a game changer. I think it has improved my mitochondrial function and lowered inflammation which is allowing everything else in my protocol to work better. + +If there is enough interest here, I can elaborate further on what my rationale has been for using these peptides, and the specific protocol I am following. I will also be posting about all the supplements, medications, and other treatments I have tried. + +My condition has improved so drastically that I have been going on 90 minute bike rides without crashing. In fact, I went on two such rides in a 12-hour window today. Brain fog has mostly elevated, and I feel hopeful for the future again. + +At one point, I was bedridden for a couple of months so it feels like I am coming back from the dead. + +Anyway, hope this information helps somebody here. Don’t hesitate to DM if you have questions. + +Wishing everyone peace and great health. Hang in there! 💪","Very similar to my upcoming regimen!!  + + +I've tried one cycle of 10mg/day SS-31 before, have found it to be super useful with respect to improving my energy levels by 10%. If you suspect mitochondrial dysfunction, you should up your dose too.  + + +3 weeks in on a low dose of Tirz (1mg/week). Definitely helping me reduce the random aches and inflammation in the body. Just started everything else now.  + + +BTW, OP, if you have skin issues/neck feels unstable, you should add GHK-Cu to your stack too. Helps with collagen production." +irr-pilot-240,covidlonghaulers,2026-03-13,comment,,"[Upstream reply] +No idea how helpful this will be but my iron levels were low after I was first diagnosed with LC–I can’t remember numbers for anything (this was at some point in 2021) but my iron itself was low enough that I was prescribed ferrous fumarate. I was on it for like 3 years and my iron levels did go back to “normal” but I saw no benefit from it. I had hoped it would help in some way but yeah…it ended up being another dead end for me. + +--- + +[Upstream reply] +Everything feels like a dead end. It’s both frustrating and disheartening. Did you have any other labs come back low? Like vitamin d or magnesium or zinc? I’ve read a lot of accounts that those may be connected. My zinc and magnesium are smack in the middle of the typical range but vitamin d is pretty low, I have started on supplements for that, but haven’t noticed a difference.","It’s been about a year since my levels were checked but I think most everything was on the low end of normal, so I’ve started taking supplements myself. It’s honestly such a joke between finding doctors/medical professionals who take you seriously and having to do all the research and everything for ourselves. You’d think it’d get easier as time goes by with more time to learn more about long covid but nope. We’re still out here fighting to be believed and treated." +irr-pilot-241,covidlonghaulers,2026-03-13,comment,,[Parent post: Taurine supplementation as a therapeutic strategy for cellular senescence and chronic inflammation in long COVID: a systematic review and meta-analysis - PubMed],"Been on it for 4 years, discovered it early with the help of AI. Been on 1-6g/day, now 3g/day. + +In my experience (which won’t be everyone’s) it makes a significant and noticeable difference." +irr-pilot-242,covidlonghaulers,2026-03-15,comment,,"[Parent post: HBOT was my last hope] + +I got Covid in May 2022, and since then have suffered POTS, PEM, and ME/CFS/extreme fatigue. I was pretty much bed bound for 2 years, but eventually have gotten about 60% back to normal with working some shifts here and there but not full time, and crashing after every work day. The most helpful things were: + +\- LDN (now at 6mg) + +\- Propranolol + +\- Midodrine + +\- Hydration with electrolytes + +\- Vyvanse on work days + +\- pacing (started at extreme bedrest with only allowed 5 minute upright time every hour) + +I recently had 40 sessions of HBOT, and it hasn’t helped me at all. I feel at a complete loss. + +Somehow, being able to work only a little bit then spending all my time outside of work sleeping and recovering feels even more devastating than when I was on bedrest, and I just feel like I’m not truly living and have lost so much of my youth to this condition already. + +My cardiologist told me there was nothing more she could do, and every other doctor I see gives me the runaround that it “isn’t their specialty” so won’t even order blood tests I request or try new tests/treatments for me. + +I’m mostly just sharing my experience with HBOT in case others were considering it, but obviously would welcome any advise anyone may have to share as well. + +--- + +[Upstream reply] +I still think the biggest hope might lie in some sort of monoclonal antibodies",I got a monoclonal treatment during Covid and I think that's why I have all the health issues I do. They injected me 4 times. 🤮 +irr-pilot-243,covidlonghaulers,2026-03-11,post,"Low Ferretin, Vitamin D and B1",,"Has anyone that's had low levels of ferretin, vitamin D or b1 seen improvements after increasing these? + +Ferretin = 12 + +Vitamin d = 28 + +B1 plasma = 6" +irr-pilot-244,covidlonghaulers,2026-04-06,comment,,"[Parent post: How I cured my PEM (and CFS more or less)] + +tl;dr version: + +Vo2max training is linked with the highest chances of lowering all cause mortality. Thus longer lifespan. + +Covid has damaged us so any attempt to reverse this would be beneficial. Mitochondrial/metabolic improvement associated with vo2max training. + +Mitochondria responsible for energy production. So repairing that may help with energy (from my experience it did). + +I began exercise by running for 5 minutes using the 80% at zone 2, 20% at zone 5 protocol. So 4 minutes in zone 2 (80% of total duration of 5 minutes) and 1 minute in zone 5 (20% of total duration of 5 minutes). And I increased total duration by 1 minute whenever I felt comfortable. + +I experienced, by the end of it all, increased energy baseline. Curing my PEM. Psychological health benefits of feeling healthy. + +During it I experienced PEM at times. Circumvent this by employing boundaries/limits tactics. On a scale of 1-10 in intensity play at your boundaries (zone 2 is usually 2/10, zone 5 is 7/10) but never cross your limits (zone 2 is usually 3/10. Zone 5 is 8/10). Otherwise PEM is likely to occur. + +Getting through crashes I just endured. You make sure you're immobile and at that point it took me about 20 minutes for my body to return to homeostasis in serotonin (my theory as to why PEM at least effected me on a neurochemical level). + +Full Version: + +Here are 2 articles I found + +https://peterattiamd.com/how-does-vo2-max-correlate-with-longevity/ + +https://www.imrpress.com/journal/FBL/23/8/10.2741/4657 + +But I mainly listened to the long form of this podcast. + +https://www.youtube.com/watch?v=xuqURs4auc8 + +https://www.youtube.com/watch?v=z82GCNXdLAA + +https://www.youtube.com/watch?v=-6PDBVRkCKc&t=2s (look at 2 hours and 24 minutes. They talk about how zone 2 training improves mitochondrial functioning in the elderly.) + +There's also a mention of how smokers who had been smoking for 20 years were able to reverse the effects of damage to their lungs or something like that after some months/years of vo2max training. I remember the time they spent training being shocking considering how much damage they reversed in such a short period of time. I do not know if that is in this specific video so don't quote me this is very paraphrased. But it was definitely in one of the vo2max videos I saw when I dove into the whole topic. + +How I started: + +I basically saw a reddit post about how someone rehabilitated and cured their cfs (unsure if they had pem as well) by walking a little further each day than the day before and stopping at about his limits. And I also watched the above videos and bro theory'd out that ""hey, my body feels older than it should. Mitochondria contributes to our energy functioning. Let me improve my mitochondria. And if this is what contributes to a longer life and my health has been 'disrupted' by the events of this time period then any longevity lifestyle would be a way to balance out that damage if possible. Also if smokers can reverse that much damage to their lungs and there's any damage to my lungs I can reverse that as well."" + +Vo2max training is basically zone 2 for 80 percent of a set duration and zone 5 for the remaining 20 percent. + +So you run for 5 minutes, 4 of those minutes is in zone 2, the last minute in zone 5. + +Run for 10 minutes then 8 minutes is zone 2, the remaining 2 minutes in zone 5. + +When I first started exercising 3 years after getting covid and enduring long covid. I decided I was psychologically ready to go back indoors without a mask believing in my immunity. I joined the gym and I started weight lifting for 2 months before adding cardio (running) at the end of every workout. + +Weightlifting was not really an issue for me. Mileage may vary depending on the person. Running however was godawfully difficult. I started out with the total duration at 5 minutes following the vo2max protocol. So I did 4 minutes at a little stronger than a jog (zone 2) and the last minute all out sprint (zone 5). + +Eventually I bumped that up to 6 minutes duration total (so like 5 minutes zone 2, 1 minute zone 5) 7 minutes duration total, 8 minutes duration total, 10 minutes duration total, etc. + +I did this everyday for 6 days a week for 2 months. After that I saw significant improvements in my energy levels. An improved baseline I would say. And although I suffered from PEM through several of my runs it seems that PEM is now gone and I would contribute that to these cardio exercises. + +This is how I basically break it down. I write down the goal number of minutes per week of cardio I want to do. And then I divvy it up. + +60 min weekly cardio goal: + +48 min zone 2 +12 min zone 5 + +5 day regimen: +16 min zone 2 for 3 days +6 min zone 5 for 2 days. 2 x 2 x 2 min + +75 min weekly cardio goal: + +60 min zone 2 +15 min zone 5 + +5 day regimen: +20 min zone 2 for 3 days +7:30 min zone 5 for 2 days. 2:30 x 2:30 x 2:30 min + +90 min weekly goal cardio goal: + +72 min zone 2 +18 min zone 5 + +5 day regimen: +3 days zone 2 - 24 min +2 days zone 5 - 3 x 3 x 3 min + +Alternatively you can just pick a certain number of minutes every day and do the 80 percent zone 2, 20 percent zone 5 method. That's how I started out. + +But doing zone 5 everyday psychologically wears you down eventually. And I'm weigthlifting as well so I decided to split it up as show above. Where Instead of doing zone 2 and 5 everyday. You calculate how much zone 2 is necessary for 3 days to hit your target and how many zone 5 days are necessary to hit your target. And on zone 5 days you do however many minutes on (so right now I'm doing 2 x 2 x 2. Equaling 6 minutes total) and I run 2 minutes, walk 2 minutes, run 2 minutes, walk 2 minutes, run 2 minutes and I'm done. + +What I experienced: + +I'm going to speak mainly on cardio as weightlifting was fairly straight forward. It was difficult in it's own right but cardio is where the most improvement and difficulty came. + +I experienced deep depression at times following the zone 5 portion of my run. I mean crippling. Not as bad as during my LC years but still bad. I mentioned the whole oxygen circulation difficulty, leading to reduced serotonin and cardio depleting your oxygen thus your serotonin theory and I strongly believe that that's why after a zone 5 run I had such, honestly, wanting to cease living type depression. Not that I would realistically do anything about it, it was literally just I cannot chemically produce happiness right now because of the serotonin depletion. However thankfully the recovery from this usually took 20 minutes. Though it was a shitty 20 minutes. Very darkly shitty. + +I would push myself though. I wanted results asap. At this point I was still in my PTSD state I believe so I think that was fueling me. + +That's another thing to mention actually. From my experience my PTSD manifested in an unhealthy need to be as fit and healthy as possible. Both aesthetically and physically. I thought that if I looked healthy, like visibly aesthetic and physically strong I would lessen the chances of sickness. Which is true. But I was obsessive about it and that resulted in physical injuries that could've been avoided as well as PEM through zone 5 cardio when really I should've been pacing and stopping as soon as I hit my limits. + +That being said I do think that going through the crash process sped up my recovery. But I'd say it wasn't worth it. + +A great rule of thumb I learned is to keep in mind your limits and boundaries. + +So in terms of intensity on a scale of 1-10. Your boundary is where you feel comfortable playing around and your limit is what you absolutely do not cross. + +So for zone 2 I run at about a 2/10 intensity and that's my boundary. 3/10 is my limit. + +For zone 5 I do 10/10 to the best of my abilities. But in hindsight (and eventually I did force myself to not go 10/10) the best way to do it would've been about 7/10 intensity is my boundary with 8/10 intensity being my limit. After a few 10/10 intensity sessions and the depression that followed early on I adopted the 7-8/10 intensity philosophy. Huh, thinking about it I guess I did switch to a lower intensity and I still recovered my physical health quite significantly. + +How I got through the crashes: + +I just suffered. You do your best to do absolutely nothing and rest when you crash. The 7-8/10 crashes were drastically more tolerable but still quite exhausting. If you stay at the 7-8/10 intensity you should be okay regarding crashes from my experience. Anything exceeding 8 you're really gambling and asking for trouble. + +What I experienced as a result: + +Improved baseline of physical energy. Deeper and healthier breathing. + +I would say that deconditioning was definitely a factor in the difficulty. But the hardest factors were the PEM's, fighting the fatigue and the most difficult imo is the poor circulation of oxygen in the body due to my whole RBC/endothelial dysfunction theory. + +tl;dr version - + +Vo2max training is linked with the highest chances of lowering all cause morbidity. Thus longer lifespan. + +Covid has damaged us so any attempt to reverse this would be beneficial. Mitochondrial/metabolic improvement associated with vo2max training. + +Mitochondria responsible for energy. So repairing that may help with energy production (from my experience it did). + +I began exercise by running for 5 minutes using the 80% at zone 2, 20% at zone 5 protocol. So 4 minutes in zone 2 (80% of total duration of 5 minutes) and 1 minute in zone 5 (20% of total duration of 5 minutes). And I increased total duration by 1 minute whenever I felt comfortable. + +I experienced, by the end of it all, increased energy baseline. Curing my PEM. Psychological health benefits of feeling healthy. + +During it I experienced PEM at times. Circumvent this by employing boundaries/limits tactics. On a scale of 1-10 in intensity play at your boundaries (zone 2 is usually 2/10, zone 5 is 7/10) but never cross your limits (zone 2 is usually 3/10. Zone 5 is 8/10). Otherwise PEM is likely to occur. + +Getting through crashes I just endured. You make sure you're immobile and at that point it took me about 20 minutes for my body to return to homeostasis in serotonin (my theory as to why PEM at least effected me on a neurochemical level). + +--- + +[Upstream reply] +I don’t think many with long covid can even walk and stay in zone 2, let alone run. Getting into zone 5 certainly triggers bad pem, if not catastrophic. The last thing I want to do is set myself up to be bed bound.","IDK what ""zones""are but after covid i couldn't walk unless it was in the house. I've gotten better now but still use my walker for distance and, with my lungs, i doubt i could run. I do need to try my clarinet again but my lungs aren't what they used to be either" +irr-pilot-245,covidlonghaulers,2026-04-06,comment,,"[Parent post: Constant widespread pain] + +Hi all has anyone experienced this symptom I have constant pain in all limbs. It doesn’t feel muscular much deeper like a squeezing or aching in bones. I’m on pregabalin which has been a game changer in reducing the intensity of the pain but it’s still there constantly and is especially bad in mornings and after activity. + +I’m on almost the highest possible dose of pregabalin and worry about it losing its efficiency over time I’ve tried to reduce dose but pain comes back immediately. Anyone got something similar?","Yes I have this on a lower level. Am on Pregabalin too. + +It has gone down signifikantly since taking LDN & LDA. I started both not too far apart so I cant say which helped. + +Noticed Improvement after 5 weeks." +irr-pilot-246,covidlonghaulers,2026-03-13,comment,,"[Parent post: Officially changed my flair to 6+ years] + +FML but also it gets better. + +From healthy non pre existing conditions to severe to now mild neuro LC. No démonstrative damage on imaging/blood work. + +Why? Mostly privilege — good insurwnce, in major US city, family money, supportive family/friends, free housing with family, medical background, ability to radically rest, multiple family members with this for decades. Also pacing, great migraine pharma, acupuncture. + +Solidarity my people ✊","Respectfully, what is the point of you listing your privilege that no one else has to recover? This is not helpful to anyone who doesn't have those things or access to those things." +irr-pilot-247,covidlonghaulers,2026-04-05,comment,,"[Parent post: NSAIDs Effects in Long COVID] + +Hey all, I'm researching the role prostaglandins play in Long COVID pathophysiology and wanted to collect data on people's experiences in this subreddit. + +For those of you who have taken NSAIDs during the time you have had Long COVID symptoms (whether you took them for LC or something else), what effect did you notice? + +Common NSAIDs include: Ibuprofen (Advil), Naproxen (Aleve), Celecoxib (Celebrex), among others. + +Your input is appreciated. + +[View Poll](https://www.reddit.com/poll/1sddrht)","I took NSAIDs regularly for almost six years but had to stop a few months ago due to kidney blood work levels. They were helpful for pain management, in particular Meloxicam, but not for other symptoms that I have noticed. Fortunately I have not suffered long term kidney damage, but I'm not sure if I will be able to resume them again." +irr-pilot-248,covidlonghaulers,2026-03-12,comment,,"[Upstream reply] +I still have some MCAS type symptoms, but they seem to have mostly subsided. If I push myself too much physically, mentally or eat a carb heavy diet, I get itchy skin, head pressure on one side and feel slightly fatigued along with brain fog. However, it is nothing comparable to the issues I had been dealing with for the past 4 years. + +--- + +[Upstream reply] +im glad you are doing better!! i started TB500, BPC157, Epitalon, MOTS-C and NAD+Glutathione. i’m afraid to start Tirz, i heard mixed opinions..","Hope this stack works for you :) + +I was skeptical of Tirz, too. Fortunately, it's been working like a charm for me." +irr-pilot-249,covidlonghaulers,2026-03-15,comment,,"[Parent post: celly health] + +has anyone used the telehealth provider “celly health”? wondering what kind of treatments they offer. i know they make you do the cytokine panel and will prescribe maraviroc but wondering if they offer anything else if your results don’t show that maraviroc will help",I know they partnered with Bruce Patterson to make the maraviroc statin treatment available nationwide. Not sure if they offer anything additional. Hard to say from their website. +irr-pilot-250,covidlonghaulers,2026-03-12,comment,,"[Parent post: LDN (Concerned to try)] + +My main symptoms are fatigue, PEM and some dizziness. Nervous system is out of wack too at times. This has been going on for about 14 months. + +I just got LDN. Is it worth it and tell me your experience?","I refused ldn when my doctor first offered it. I did research and was dying to get to next appointment. I asked him to prescribe it and I’ve had I’d say a 70% improvement. No longer fully bed bound and can stand for shower. + +Go LOW and SLOW and follow docs directions on titrating up. Anything’s worth a shot when you are in the dumps." +irr-pilot-251,covidlonghaulers,2026-03-13,comment,,"[Parent post: Mystery virus put me in a bad long Covid fatigue flare up: help.] + +Hey guys about 15 days ago I came down with a mystery virus. I tested negative for everything. I had pretty bad bronchitis for about ten days. Finally the coughing is almost gone. I am still coughing up clear mucus. Most of my viral symptoms are gone, and now I am left with this extreme fatigue. I am so exhausted. I can barely do anything earlier today. I was taking a shower and I felt like I was gonna blackout how long until my baseline gets better. This shit is so stupid. I hate it for reference. I have a mild baseline right now. I feel like I’m in hell with the capital H.",Ivermectin every other day for a week cleared up the lingering cough and mucous when I got reinfected two months ago. Didn’t take away my long covid ailments but did help with the cough. +irr-pilot-252,covidlonghaulers,2026-03-13,comment,,"[Parent post: Panic attacks on tirzepatide?] + +Anybody on semiglutide or tirzepatide experience huge increases anxiety and panic attacks? + +I’ve had tremendous success with reducing my overall pain and inflammation with tirzepatide. The last batch I ordered seemed to cause both me and my girlfriend huge increases in anxiety. I usually only do 0.5mg per week but I increased it to 1mg per week and we bought from a new supplier. So idk if it was the quality of the tirzepatide or the dose that caused this. + +Is anyone else experiencing the same thing?","Yup! + +First week I had 4 days of some cross between depression and wonky doom-y panic attacks. Second week it was only 3 days. Third week I just had higher than normal baseline anxiety. Now it seems to be causing some low level anhedonia for a couple days after the injection. I'm going to stick with it for now since my body seems to be adjusting. And for context I started on 1/10th of the starting dose, and I'm now up to 1/5th of the starting dose lol #lowandslow" +irr-pilot-253,covidlonghaulers,2026-03-13,comment,,"[Parent post: Mystery virus put me in a bad long Covid fatigue flare up: help.] + +Hey guys about 15 days ago I came down with a mystery virus. I tested negative for everything. I had pretty bad bronchitis for about ten days. Finally the coughing is almost gone. I am still coughing up clear mucus. Most of my viral symptoms are gone, and now I am left with this extreme fatigue. I am so exhausted. I can barely do anything earlier today. I was taking a shower and I felt like I was gonna blackout how long until my baseline gets better. This shit is so stupid. I hate it for reference. I have a mild baseline right now. I feel like I’m in hell with the capital H. + +--- + +[Upstream reply] +Patience? Rest? Pacing? You know the drill. I’ve been reading about ultra low dose abilify. New tool? + +Anyway. I’m sorry. That completely sucks.","Oh lord no I wouldn’t touch ability. I did a few trials of other antidepressants and it back fired lol. + + +Fuck patience isn’t my best virtue. I’m desperate to get back my crappy energy lol because my husband is deploying and I’ll be alone with a two years old toddler for the next six months. I live about ten mins away from my family but they have work and can only help at night time. I hope I miraculously bounce back in two weeks." +irr-pilot-254,covidlonghaulers,2026-03-13,comment,,"[Parent post: You are so brave] + +I wanted to take a minute to tell everyone how brave I think they are. I see your posts about trying new medications and therapies and fighting every day/night. I wish I was as brave as some of you guys, but my anxiety and medication specific trauma is so bad that I’m terrified to try new medications. I know I have to try, especially now, but the fear of horrific side effects is strong. You guys are truly warriors fighting for your life and that means something. + +--- + +[Upstream reply] +i have extreme anxiety about meds as well, you’re not alone in that feeling. know that if you google it and look at others opinions, that MOST people with a positive experience DON’T write a positive, so the bias towards negative side effects is extremely heavy. +we’re here if you are scared as well. if you DO experience a scary symptom, i’m sure someone in this group would know how it feels/what’s going on! and can help through it. + +you’re fucking brave. you are strong. you’re amazing every second you’re here and fighting for your life as well. +stay strong, friend. we’re in this together. 💕","also, i have med trauma too lol real bad SSRIs give me panic attacks and i’m a depressed person so went through many of those before trying adhd meds that work better for my mental shit." +irr-pilot-255,covidlonghaulers,2026-04-01,post,How to reduce migraine?,,"I‘m constantly bouncing between decent days (decent energy, no tinnitus and migraine) and PEM days (like today). The worst symptoms are migraine and tinnitus (these come together) besides various other symptoms. + + +Has anyone any advise how to reduce the migraine? I’m not a big fan of ibuprofen but if I have to take it to reduce it, I will. Thanks!" +irr-pilot-256,covidlonghaulers,2026-03-25,comment,,"[Parent post: Just curious to know how long you’ve been living with LC] + +The more and more I read, articles make it sound like most people with LC only suffer for weeks to months after; but I’m in groups where people have been suffering for years… I’ve been sick with LC since 4/2020 after my first and worst round of it. I’m better than I was, but still have days (like today) where I feel completely awful. I went from being completely healthy, to now seeing 6-7 specialists. Just looking to see who else is in the same boat.",Post viral illness isnt new. Covid is just a common vector these days. I have a friend thats been like this for 30 years. +irr-pilot-257,covidlonghaulers,2026-03-16,comment,,"[Parent post: Is there hope? Limited energy 4 years on. Crash after carbs, crash after exercise.] + +I am 33F and I am slightly overweight. Before developing LC I was able to exercise regularly and would have energy. I mention my weight because it's easy for me to gain from less movement but I won't qualify for Wegovy, Ozempic and the like in my country and have seen it recommended on here. + +I feel constantly frustrated that I sometimes feel ok so can exercise, or wake up ok - plan to exercise then crash. When I'm experiencing my symptoms, even light walks are impossible. + +I crash after carbs, I crash after exercise. Not exercising at all and letting my body rest, somehow compounds my exhaustion. I feel I am at my wits end. Tried berberine which didn't help either. Bloodwork fine. Vegetarian and take lots of different supplements including pine bark (which has helped with my chest pain and palpitations), B vitamins, Loratadine, multivitamins, omega 369 and glucosamine. I am still soooo tired. + +Is there anything that has helped y'all gain energy to a degree of being on the road to recovery? I don't want to try nicotine patches, although I've seen them be beneficial to some of you. + +I take medication for ADHD and this doesn't help with energy either if I'm experiencing my fatigue and PEM. + +--- + +[Upstream reply] +If u are only slightly overweight u shouldnt even be considering something like ozempic its not great i have no idea why ppl are suggesting that. And u say ur vegetarian, make sure ur getting enough protein bc i find myself craving protein source foods bc i barely eat it myself(bc i struggle the most with meat and stuff with eating), and often find my energy being a little better when i have some. The carb situation is tough tho bc for some situations, especially mine, i can eat stuff like pasta and bread way easier. But it does make me kinda tired afterwards, but in the end i dont rly care bc i get tired from any food and its better than ending up in the hospital again almost starved to death. If u dont want to try the patches, dont try them. And dont expect any medication to make a difference either. Best case scenario u get a lot of water/salt in and stay extra hydrated, and just do the smallest bits of exercise u can, whenever u can; until u work up to bigger experiences. I have POTS and probably other stuff going on(POTS is just the only thing ive gotten diagnosed with but idk for sure if it is the reason for all my symptoms). And the only way i made any progress was basically the same idea as exposure therapy just very, very brutal, but it was kinda worth it in the end. I went from not being able to walk a few feet without getting very nauseous and not swallow correctly to having a few hour long workouts a few days a week that were pretty intense. Sadly ive had a pretty bad relapse recently, so who knows where that will end up, but it worked okay while it lasted i guess. If u have dysautonomia(idk if u have this but its commonly associated with LC and u might), sadly it is one of those situations when u will not get anywhere without extreme discomfort, and u getting anywhere at all in the end is hit and miss. But its worth a shot. U cant give up. And dont make the mistake of putting all hope in doctors, u have to save ur self for the most part.","Thanks for your response, I really appreciate it. I think with ozempic and the like, some people have found it's also given them energy, so could by why they're suggesting it. + +I checked up dysautonomia and I'm not sure it fits with me so much, unless it's an umbrella term as I believe I have MCAS. In terms of treatment I don't know what to do, but I will start taking more electrolytes. My protein intake largely consists of protein shakes and yogurts, which have artificial sugars so I'm a bit torn here as I really don't have the energy to be cooking nutritious meals in order to get the protein in. + +Sorry to hear about your relapse, hoping you can recover from this setback quickly 🫂" +irr-pilot-258,covidlonghaulers,2026-03-29,comment,,"[Parent post: Any others with severe tendon, muscle and joint pain ?] + +I am really trying to understand what is happening to me as my doctors are useless and saying my symptoms are psychological. + +I have SEVERE pain in my muscles, tendons and joints. it is my worst symptom and is the reason I am completely disabled unable to anything. even lifting a damn fork is too much. + +it feel like my tendons are constantly snapping and my joints feel very unstable. + +also get burning lactic acid feeling in my muscles. + +my ANA is negative. + +things I tried are: + +MSM + +boswellia + +hydrolyzed Collagen + +vit c + +creatine + +b1 + +ldn + +most things make me worse (except LDN)",I have basically the same symptoms because of this I am back bound and a severe pain everyday unable to move much at all. I give you my word that if I ever find out something that helps me significantly I will update back. +irr-pilot-259,covidlonghaulers,2026-04-03,comment,,"[Upstream reply] +it took over a year. yeah i had to change my diet and supplements. i have a post in my profile of all the stuff i have tried. + +--- + +[Upstream reply] +I’ll take a look. But yeah it’s frustrating because I’m already eating a low carb diet and taking a bunch of supplements that should be helpful for blood sugar/insulin.","yeah it’s highly dependent on what your diet and supplements are. + +if you can post a detailed list with brands and servings i can compare it to what i’m doing." +irr-pilot-260,covidlonghaulers,2026-03-14,comment,,"[Upstream reply] +What's the reason? + +--- + +[Upstream reply] +None of the researchers are looking to do these types of studies that is the reason. The only one I recall being done on ME/CFS was by Bhupesh Prusty who was presented with the opportunity after 3 ME patients took their lives in a suicide pact , none of the other researchers were interested. + +So its currently mpossible to find a group you can register your body with to be the place it gets sent on your death. But please ring and email around and ask various research groups, it might put some pressure on that this is valuable work and patients need to be able to arrange this.",How do I find more information about Bhupesh Prusty's investigation of the 3 people? Nothing is coming up. Thank you +irr-pilot-261,covidlonghaulers,2026-03-11,post,Sinus issues,,"Inflamed turbinates and small amounts of fluid in left sphenoid sinuses found on CT scans. I’ve already had a nasal swab to test for bacteria as well at mycotoxin for mold testing. No allergies as far as I know. + +Have tried sinus rinses, oral steroids, antihistamines, Nasalcrom, mast cell stabilizer, nasal steroids + +Nothing has helped does anyone have any ideas or similarities? I have mecfs subtype of long covid… have pem and always tired." +irr-pilot-262,covidlonghaulers,2026-04-05,comment,,"[Parent post: Dissociation] + +Hey guys, does anyone else completely dissociate and feel like they’re in a simulation / not fully present and extra brain foggy / disconnected in environments such as airport terminals, stores, restaurants, and even car rides. It’s like my nervous system can’t handle any motion or stimulation in the real world. No psych meds have made a difference. Any input is appreciated. I do have severe multi level CCI so that’s likely part of the equation if it’s affecting the brainstem, vagus nerve, jugular vein, other vasculature etc. other secondary things I’ve been diagnosed with are endothelial dysfunction, dysautonomia, and venous insufficiency. + +--- + +[Upstream reply] +You can learn to guide your dissociation and even stop it from happening. + +PTSD exercises could help, since after all it is also about messes up nervous system.","I can now feel it coming on while I'm driving and can push it away long enough to find a place to park and reset my nervous system +(unlike the first time when i suddenly ""came to"" and realized i was on the highway, going 80, and lo and behold, I WAS THE ONE DRIVING 🤣)" +irr-pilot-263,covidlonghaulers,2026-03-12,comment,,"[Parent post: I think a fellow long hauler I met here committed suicide] + +We've been talking for years. + + + +Last messages yesterday were speaking in the past tense. Defeated. + + +Even if he didn't succeed, he seems set on it. We're so similar. + + +I feel very flat & disconnected. I've been heavily ruminating on suicide for months & gave up in many ways months ago. + + +I thought he just posted about having another kid. + +--- + +[Upstream reply] +I'm one of the og long-haulers, Feb 14 2020 infection date. + +not allowed to give up! + +I just spent about 6 hours learning what [Claude.ai](http://Claude.ai) can do to help me re-evaluate my conditions and find missing supplements to get this recovery rolling again. + +A year ago, I didn't have the energy or brain capacity to be looking at Claude, but with benefits of pyridostigmine I am back on the mend...","I've been using Gemini and Claude since last acute infection. They do make stuff up, have to be vigilant, but I've been making much better progress than after prior two infections. Two new antihistamines that don't aggravate an unrelated medical condition, combined with some different supplements and IR light, aimed at (1) trying to improve immune profile based on cytokine panels and some other blood work and (2) improve mitochondrial function. For others here, if you can handle the screen time/prompting and take results with appropriate skepticism, this might be worth it. Peace & healing everyone." +irr-pilot-264,covidlonghaulers,2026-03-30,comment,,"[Parent post: Caught Covid again.] + +I am so mad. I’ve been wrecked for the last two years. Unable to work for over a year. I don’t go anywhere, I mask for the grocery store and doctors office. I babysit for my sister occasionally. She needed me to babysit a few weeks and didn’t tell me anyone was sick beforehand, said it was just “allergies”. I ended up with a 3 week awful cold. I just got over that and babysat again Tuesday. My sister was coughing and the baby was very snotty. I’ve been hoping I was dealing with allergy stuff until I had that familiar feeling in my chest and had to use my inhaler which is rare. Just took a test and yup.. positive. + +That’s twice she’s had me come over while they were sick and didn’t tell me anything. And to make it 10 times better, they just visited my grandmother today who is on hospice with LUNG CANCER. + +I am just so defeated. They will act like I’m overreacting and make excuses. She still argued they only had allergies last time when I got sick. + +Has anyone dealt with a reinfection? I’ve had Covid several times but it’s been a couple years now. I don’t even know what to expect. I want to mentally prepare for the set back. I’ve got hypermobile Ehlers- danlos, MCAS, POTS, PEM/CFS and company. + +I’ll call my doctor in the morning and get them to prescribe antivirals. Hopefully they can be delivered because my neighbor’s rotten tree fell on my car and it’s likely totaled and I’m blocked in. 😩 + +--- + +[Upstream reply] +Sis: “Can you babysit for me?” + +U: “Sure…can you take this Metrix test for me?” + +Sis: “Why? I’m not sick….it’s just allergies” + +U: “I know. So you’ll pass with flying colors” + +20 minutes later…. + +Sis: “I don’t know what’s wrong with this stupid test. It says positive” + +U: “No problem. I’ll see you when your allergies are gone” + +THE END.","Yup, should have done that from the beginning. But it won’t be an issue anymore, they won’t be seeing me for the foreseeable future. She’s still claiming allergies. And I’m done." +irr-pilot-265,covidlonghaulers,2026-03-12,comment,,"[Upstream reply] +Also, lots of pessimists in here saying that your SGB won't last. But for me, when I got my first successful one done after literal YEARS of no other treatments/supplements/diets even TOUCHING my symptoms, just the fact that something FINALLY helped was miraculous in and of itself. + +Don't push too hard OP!! And try to avoid stress. Your system is still sensitive, it needs time to get strong again. + +--- + +[Upstream reply] +How many have you had and how long do you see the effects lasting for? Any long term improvements? It sounds like bliss!","I've had a bunch, with different doctors. The problem is that they don't last because a stressful event not long after the SGB always resets my progress, whether it was a fight with a family member, pregnancy, etc. It doesn't just randomly wear off. My longest lasting SGB was with Dr Gaskin in Bryan, TX, that lasted 6 weeks until a stressful fight that a family member initiated with me. It's hard to tell how much long term improvement there has been because I'm in a pretty dark place right now. But I know 100% that my long covid is dysautonomia, and that Dr. Gaskin's SGB can treat it if only I can get it to stick. I've lost track of the other treatments I've done." +irr-pilot-266,covidlonghaulers,2026-03-12,comment,,"[Parent post: Dream Team Peptide Stack for LC] + +Disclaimer: Not medical advice, just my personal experience for the past few weeks. + +Hola, my LC family. Thank you all for keeping me sane these past few years. This illness can be incredibly isolating and I am glad to have access to this community in what has undoubtedly been the most trying time of my life. + +Just wanted to drop in and share what’s been working for me for the past few weeks. + +From left to right: **Tirzepatide, Thymosin Alpha 1, TB-500, KPV, MOTS-C, SS-31, NAD+, GHK-Cu, BPC-157, and Epithalon.** + +Tirzepatide has definitely been a game changer. I think it has improved my mitochondrial function and lowered inflammation which is allowing everything else in my protocol to work better. + +If there is enough interest here, I can elaborate further on what my rationale has been for using these peptides, and the specific protocol I am following. I will also be posting about all the supplements, medications, and other treatments I have tried. + +My condition has improved so drastically that I have been going on 90 minute bike rides without crashing. In fact, I went on two such rides in a 12-hour window today. Brain fog has mostly elevated, and I feel hopeful for the future again. + +At one point, I was bedridden for a couple of months so it feels like I am coming back from the dead. + +Anyway, hope this information helps somebody here. Don’t hesitate to DM if you have questions. + +Wishing everyone peace and great health. Hang in there! 💪 + +--- + +[Upstream reply] +Just be careful and remember that you are doing medical experiments on your own body. + +None of those are tested. No one knows how safe any of them are. + +Know what you are doing before you start doing it. There is no undo button.","I understand your concern and the limited data available on these peptides needs to be addressed. + +But I figured if I can put anti-HIV and statin drugs in my body, natural signalling molecules like peptides shouldn't be too hard. Jokes aside, I have not taken these decisions lightly. Most people on this sub have known the desperation to get better." +irr-pilot-267,covidlonghaulers,2026-03-14,comment,,"[Parent post: Fecal Transplant] + +Given that many of us have gut dysbiosis. + +Has anyone tried fecal transplant?","I had the same exact antibiotic experience. I wanted to live on antibiotics because I felt so good. All my symptoms were cured when I was on the antibiotics. Doctors basically didn't believe me, but so true." +irr-pilot-268,covidlonghaulers,2026-03-15,comment,,"[Upstream reply] +I'm just a third party here, but LLMs state they will delete your data connected to your account after so long, if you tell them to, but they don't necessarily say they won't keep it or use it for training in some way. Nor can they be trusted in what they say frankly, they've been proven to lie time and time again. + +I suppose the person who mentioned it may have concern this info may have your personal information on it somewhere, and if so, then it could theoretically be tied back to you in some way in the future. + +Generally speaking, it's good not to have private info out there, practically speaking, I can't imagine what anyone would do with your health results and identifying information. Unless you're some person who doesn't use the internet or interact with the world, it's almost certain that all of your info is probably already leaked. + +--- + +[Upstream reply] +The only thing it would be used for is exactly what a previous commenter said, data sets for research, cure/protocol development, etc... which could lead to their profit. Oh no! Somebody may benefit from my information... including me... and I cant exactly profit off that information by selling it. + +To me... my personal opinion... 100% positive someone will violently disagree... it isnt something to worry about in the grand scheme of the short time we have on this earth. Particularly given the PII stripping requirements in place. + +Just my .02... my info will be going in. Hope it helps someone else. Free of charge.","Sounds about right in terms of where it may be used. But if it's just found online, I'm not even confident they could use it because it wouldn't necessarily be true and they can't validate it as being true. When we sign up for nearly anything out there medical, they almost always have tons of terms and conditions that include taking shit. + +One LC trial I was going to try wanted a saliva sample for a single test, but I'm the fine print it was ""we will keep your saliva and may use it for any number of tests including genetic testing"" and a lot of other shit. In that case I opted out because that was crazy, but that's the norm. It's for profit all the way down." +irr-pilot-269,covidlonghaulers,2026-04-04,post,struggling badly since jan,,"I think I am just having a bad last few days. I am having some intense chest/sternum pain, radiates to left breast and muscle, palpitations, and nothing is relieving it. It's debilitating, hasn't been this bad for about 2 years and I am in year 6. + +Is it the hashimotos? pots? costochondritis? posture? hernia? gerd? roemheld syndrome? am I doing too much iv hydration? side effects from all the meds I take? is it.. because i ate? or is it cause i need to eat? is my esophagus fucky because i stopped a med? is it something new i have yet to test for? because i don't exercise as much? or because I did exercise for a second the other day? + +I'm not able to sleep because it's so disruptive. I know it'll get better, it always does but damn. It hurts, I just have been crying a lot lately." +irr-pilot-270,covidlonghaulers,2026-03-17,comment,,"[Parent post: Sleep Apnea] + +I was borderline for a while, but developed full sleep apnea after COVID. Now with allergy season starting and worsening my symptoms all around, I am waking up not breathing and desaturating down to 87% O2 even with using the CPAP. Anyone have experience with sleep apnea like this? I have a pulmonology follow up tomorrow. + +--- + +[Upstream reply] +Which antihistamines do you use? + +Loratadine tablets and mometasone nasal spray help me.","All of them 🤣. The antihistamines: nasacort nasal spray, zirtec, pepcid. Others: monteleukast, azelastine nasal spray. Plus saline rinse 2x daily. Just got xylitol spray to try today. I’m wondering is if this is a nervous system issue since I am using a CPAP and still not breathing." +irr-pilot-271,covidlonghaulers,2026-03-22,comment,,"[Upstream reply] +Re: the AS - which imaging did you have done? +And have you tested for HLA-B27? + +I also have symmetrical joint pain/inflammation in those joints plus spine and others. + +--- + +[Upstream reply] +I was B27 negative, but they compared several years of old imaging and could see erosive changes. This last one was a specific xray for the SI joint. It was between that and a course of strong anti-inflammatories they put me on, which caused the pain to go away immediately, and returned as soon as I stopped. For B27 negative cases it’s a hard diagnosis.","Also tested negative on the marker here same. + +Which strong anti-inflammatory were you on? + +I had xrays done (generic hospital ones), the worst pain was in my spine and I got sent to a specialty radiology clinic where the noticed my lower spine (like just above the pants waistline area) had some degeneration but not major. They only check 1 area so did not check my SI joints. They offered me a cortisone shot on the spot so I took it for lower spine, but it didn’t help. + +I get worse pain flares around weather changes like wind & low air pressure, periods, etc. Do you get this too?? + +I still don’t know what I am dealing with re: this pain almost 3 yrs in." +irr-pilot-272,covidlonghaulers,2026-03-13,comment,,"[Parent post: PEM] + +Currently in a crash from mild/moderate PEM. Today is my sisters wedding and it seems like i won’t be attending. I’d have to take a 5 hour bus ride plus all the noise, socializing and what not from the wedding will make me feel worse. I feel really bad for not attending. Has anyone experienced something similar?","Yes - there's a couple things I would do in this situation which might not be possible for you, but I have taken steroids (dexamethasone and hyrdrocortisone) to get through stuff like this. Also, for day-of activities in the middle of a crash, I have taken kratom or legit opiates." +irr-pilot-273,covidlonghaulers,2026-03-12,comment,,"[Parent post: Dream Team Peptide Stack for LC] + +Disclaimer: Not medical advice, just my personal experience for the past few weeks. + +Hola, my LC family. Thank you all for keeping me sane these past few years. This illness can be incredibly isolating and I am glad to have access to this community in what has undoubtedly been the most trying time of my life. + +Just wanted to drop in and share what’s been working for me for the past few weeks. + +From left to right: **Tirzepatide, Thymosin Alpha 1, TB-500, KPV, MOTS-C, SS-31, NAD+, GHK-Cu, BPC-157, and Epithalon.** + +Tirzepatide has definitely been a game changer. I think it has improved my mitochondrial function and lowered inflammation which is allowing everything else in my protocol to work better. + +If there is enough interest here, I can elaborate further on what my rationale has been for using these peptides, and the specific protocol I am following. I will also be posting about all the supplements, medications, and other treatments I have tried. + +My condition has improved so drastically that I have been going on 90 minute bike rides without crashing. In fact, I went on two such rides in a 12-hour window today. Brain fog has mostly elevated, and I feel hopeful for the future again. + +At one point, I was bedridden for a couple of months so it feels like I am coming back from the dead. + +Anyway, hope this information helps somebody here. Don’t hesitate to DM if you have questions. + +Wishing everyone peace and great health. Hang in there! 💪","Great to hear Thymosin Alpha 1 is also a game changer for me, unfortunately it only works for like 72 hours." +irr-pilot-274,covidlonghaulers,2026-03-18,comment,,"[Parent post: After Covid] + +Has anyone else have any issues with there memory after covid. +My whole brain is on flame. My short term memory is really, really nit the same. +I had brain fog for years now, but I don't know if it effects my mind. I remember semi everything but my short term memory is shot. +Is there anyway that I can do something for myself to regain it? +I know, I need more sleep. That is no 1. +Maybe that my nerves and my neurons is not on the same page.","For me, the biggest improvement was L-Tyrosine and L-Phenylalanine. + +Those amino acids are required for neurotransmitter support. First time Tyrosine gave me an improvement within 5-10 minutes. Adding it to my daily supplements made it gradually better. + +B-Vitamins also helped me." +irr-pilot-275,covidlonghaulers,2026-03-20,comment,,"[Parent post: What supplements made the cut for you?] + +If you’re like me, you’ve had Long Covid (overlapping with ME symptoms including PEM) and your body has been a science experiment. You’ve tried all kinds of supplements over that time. Which ones made the cut for you? What’s the stack you kept? Mine is: + +Oxaloacetate + +NAC + +L Cittruline + +Rhodiola Rosea + +Acetyl L Carnitine + +D-Ribose + +NMN + +CBD Oil + +Magnesium Threonate","L-Tyrosine and L-Phenylalanine helped me. Taurine does something. + +Electrolytes are good, but most brands have too much salt and sugar. + +VitB-Complex is also good and I take Vit D+K2 supplements also." +irr-pilot-276,covidlonghaulers,2026-03-11,comment,,"[Parent post: Can anyone let me know if they relate?] + +Obviously we’ve all been to the doctor 4 or 5 or 500 times every test, every look, every “it’s just stress and tension”. + +Had Covid in October, since then I’ve had persistent neck pain into my shoulders and arms, leg issues in my right leg (now moving into my left), and now I am all of a sudden getting tingling all over my body including abdominal pain and hip pain. + +3 docs in 5 days nobody is worried about MS or anything serious, clean CT, bloodwork, everything. 2 weeks on this flare up and I am driving myself insane. + +Meditation, vitamins, no caffeine or alcohol, walking and working out every day. + +What more can I do? I am feeling hopeless 😞","I also had some pain in my shoulder blade and tingling down my hands and hips. Now I experience tiny muscle spasms everywhere in my body, all the time. I also feared of MS. Electrolytes sort of help, but not really. My doctors took “tingling hands” as an opportunity to test me for a thousand other things without luck. + +Consider doing breath work (box breathing), and when you exercise try to do it abnormally and intentionally slow, to teach your body it’s okay to relax. That has helped with some of the cardiac symptoms I was experiencing. I feel for you." +irr-pilot-277,covidlonghaulers,2026-03-21,comment,,"[Upstream reply] +It’s in the comments below. + +--- + +[Upstream reply] +Thanks Duane. Do you think theres is something that can help that like paxlovid? Im about to try a generic pax AV in two weeks","Problem with paxlovid is that it’s mostly failed. Either covid is hiding in tissue reservoirs where it can’t get to do its muted enough that paxlovid isn’t enough. There is rationale from things like +HIV that we may need 2-3 simultaneous anti virals to hit it." +irr-pilot-278,covidlonghaulers,2026-03-19,comment,,"[Parent post: PEA + LUTEOLIN] + +What Is the Role of Palmitoylethanolamide Co-Ultramicronized with Luteolin on the Symptomatology Reported by Patients Suffering from Long COVID? A Retrospective Analysis Performed by a Group of General Practitioners in a Real-Life Setting + +Anyone tried PEA + LUTEOLIN for symptom management?",Handful of stuff helps stabalize mast cells these are two supplements (not medicarions) that stabalize them. +irr-pilot-279,covidlonghaulers,2026-03-14,comment,,"[Upstream reply] +B12 is about 360, I have sibo so my neuro agreed to b12 injections, hasn’t helped at all. Iv also been taking sublingual b12 spray. Ferritin is about 80. + +--- + +[Upstream reply] +Check out the b12 group and read the guide there. Many of your symptoms may be due to your low b12. I resolved or improved many of these symptoms as well. The issue is that b12 deficiency can take many months of multiple injections a week to heal, so it’s easy to give up on. Please check into this and learn as much as you can.",Second this. Cofactors are needed for b12 to work and 360 is low. Might also be thiamine deficient +irr-pilot-280,covidlonghaulers,2026-04-04,comment,,"[Upstream reply] +Do you think it is helpful to share it here? It's not against you, it's a genuine question. I try to protect myself as much as possible from this type of content, especially because there's nothing we can do about it. It creates a lot of stress. And stress is toxic to the body, especially when it's high level and chronic. I can't do much about the various risks that come with LC, but I am able to do something about stress by reducing my exposure to difficult content. So spreading difficult content to other vulnerable people online is not something I do. + +--- + +[Upstream reply] +Personally I like to keep abreast of all the research so that I can be aware of the risks associated with the condition and do my best to mitigate them. I also think there's a psychological component in that it allows me to intellectualise my situation and feel like I have some amount of control over it. I appreciate not everyone approaches it like that and some might prefer to simply avoid this sort of content, and they can scroll by and not engage if that's the case. Many people here like to follow research developments (most of which focuses on similar health risks) which is why I posted it here, and a huge proportion of the posts on this sub could elicit some amount of anxiety.","Yeah... This sub is really stressful most of the time. I understand it's good to share knowledge. When I first got sick I also wanted to know everything... I just realized over time that it was causing me much more harm than good. So just sharing that. I'm well on my way to recovery now, so I feel more detached, but a year ago I just couldn't handle this kind of info without entering into spirals of anxiety, which made me crash more." +irr-pilot-281,covidlonghaulers,2026-03-12,comment,,"[Parent post: SGB is what made me return to normal] + +Hey all! + +It seems that most people who spent some time on this sub disappear without a word when their battle with LC is won, which furthers the conclusion that most people with LC are damned to suffer it if not for eternity then at least an unimaginably long period of time. I know that even though I assumed that in my case it will be somewhere between a year and two, there was a large part of my brain fearing that this might be far too optimistic. + +So, I decided to write this post given that after a 9-month battle I’m so far 8 days fully symptom-free after an SGB procedure. My symptoms in recent times were fatigue, inability to walk for longer than 30 minutes without crashing, slight brain fog and slight hear beat fuckery (though the last two vastly improved in the previous \~2 months). I had the right side done, given data from this study [https://pmc.ncbi.nlm.nih.gov/articles/PMC12374758/](https://pmc.ncbi.nlm.nih.gov/articles/PMC12374758/) + +Duration of improvement + +Hours: 5.8% +Days: 9.6% +Weeks: 3.8% +Months: 23.1% +Persistent improvement: 13.5% + +Rated change in symptoms + +Much better: 21.2% +Better: 17.3% +Slightly better: 7.7% +No change: 34.6% +Slightly worse: 13.5% +Much worse: 5.8% + +I was super curious and well, excited, since based on my symptom combo it seemed like this procedure could be quite a decent choice… and yeah, it definitely was. In most of the stories about sgb in the context of long covid the effect is usually gradual, and becoming stronger on the day afterward, whereas in my case I basically didn’t feel any LC symptoms right after the procedure, and did experience an intense sense of calm. I was monitored for 30 minutes, then walked to my parents home and didn’t feel any of the fatigue. Since then been slowly starting to introduce more movement - tried a 1.5h walk, 2 days ago did exercise with weights for the first time in like a year, and so far 0 LC symptoms. + +Whether it’s permanent or not, we’ll see, but if not, then definitely gonna schedule additional SGBs. Will it be a cure for everyone? No, it seems that more people experience improvement than outright elimination of LC symptoms, based on very limited studies ⅓ of people notice no change whatsoever, and some experience worsening (in other studies the % of those who experienced worsening were more optimistic, but they were done on small number of people as well), but there’s also \~ ⅓ chance of the effect lasting either months or permanently. + +Also, in the studies I’ve read about usually only the local anesthetic was used, and no steroid afterward (unlike in SGB for pain), but in soooome cases the steroid was used as well, and based on results it didn’t seem clear which one is better, so I asked the doctor and he was in the pro-steroid camp. I don’t remember the exact explanation but for some reason it was supposed to lengthen the effect, so I had a steroid included as well - adding this bit just because I know that the most popular SGB protocol for long covid doesnt use the steroid (which admittedly does seem to have a high success rate). + +If you’ve got any questions regarding the process let me know, and I wish you all a quick return to health!","Also, lots of pessimists in here saying that your SGB won't last. But for me, when I got my first successful one done after literal YEARS of no other treatments/supplements/diets even TOUCHING my symptoms, just the fact that something FINALLY helped was miraculous in and of itself. + +Don't push too hard OP!! And try to avoid stress. Your system is still sensitive, it needs time to get strong again." +irr-pilot-282,covidlonghaulers,2026-03-13,comment,,"[Upstream reply] +From all of the supplements I have tried I think taurine is the one that does the most. I feel much better when I take it. It helps me with anxiety, fatigue and a little bit with muscle weakness + +--- + +[Upstream reply] +That's enough for me! I just Amazon'd some. Any guidance on types etc?",I take Swanson brand which is just simple taurine i think. I take 500 mg in the morning as it can interfere my sleep. I am not sure but i think you can take up to 2 grams a day +irr-pilot-283,covidlonghaulers,2026-03-13,post,Panic attacks on tirzepatide?,,"Anybody on semiglutide or tirzepatide experience huge increases anxiety and panic attacks? + +I’ve had tremendous success with reducing my overall pain and inflammation with tirzepatide. The last batch I ordered seemed to cause both me and my girlfriend huge increases in anxiety. I usually only do 0.5mg per week but I increased it to 1mg per week and we bought from a new supplier. So idk if it was the quality of the tirzepatide or the dose that caused this. + +Is anyone else experiencing the same thing?" +irr-pilot-284,covidlonghaulers,2026-04-09,comment,,"[Parent post: Is this long Covid? Help] + +So I caught covid while I was on a 3 week cruise. I was in bed for 2 days and barely functioning for the rest of that week. Now I am 7 weeks out and still have low energy and stuffy/runny nose. I have tried all the supplements, allegra, etc and nothing is working. It's exhausting still being sick. I'm willing to try nicotine, fasting, etc. What can I do to feel better? It's like I never rounded the corner and this is the 4th time I've had covid. Help + +--- + +[Upstream reply] +Rest like you have never rested. Like stupidly so. Less screens. Shower sitting down. No drama, no conflicts. Call in sick. This saved me from worse things and I’m still going through it after 1.5 yrs..","I was working my ass off right after Covid and here I am, 4 years later, dealing with the fallout. It took me 3 years to learn what ""rest"" actually meant. + +It sounds silly, but the best advice I can give is to spent a full month sitting on your couch getting stoned. No thoughts, no movement, just rest." +irr-pilot-285,covidlonghaulers,2026-03-13,comment,,"[Upstream reply] +Yes, I noticed a difference after recently getting an iron infusion.  +Vitamin d I didn’t notice anything after correcting it.  + +I also could tell after I fixed a Vitamin b12 deficiency so that is another one to look into. + +--- + +[Upstream reply] +May I ask what level u got ur b12 to? I got mine tested back in November but only got to see the results now with 417ng/l but I saw some people recommending it to go above 500?","I’m sorry I don’t know actually because it was years ago and I can’t find the tests results to check. But I took 1000 mcg every day for a while.  + +I have also heard higher levels are more optimal." +irr-pilot-286,covidlonghaulers,2026-03-12,comment,,"[Parent post: Low Ferretin, Vitamin D and B1] + +Has anyone that's had low levels of ferretin, vitamin D or b1 seen improvements after increasing these? + +Ferretin = 12 + +Vitamin d = 28 + +B1 plasma = 6","My ferritin was at 7 about a month ago and I’ve been supplementing since. Maybe it’s placebo but I noticed small progress up until a cold made me crash. Definitely can amplify fatigue, heart rate and such!" +irr-pilot-287,covidlonghaulers,2026-03-12,comment,,"[Parent post: Dream Team Peptide Stack for LC] + +Disclaimer: Not medical advice, just my personal experience for the past few weeks. + +Hola, my LC family. Thank you all for keeping me sane these past few years. This illness can be incredibly isolating and I am glad to have access to this community in what has undoubtedly been the most trying time of my life. + +Just wanted to drop in and share what’s been working for me for the past few weeks. + +From left to right: **Tirzepatide, Thymosin Alpha 1, TB-500, KPV, MOTS-C, SS-31, NAD+, GHK-Cu, BPC-157, and Epithalon.** + +Tirzepatide has definitely been a game changer. I think it has improved my mitochondrial function and lowered inflammation which is allowing everything else in my protocol to work better. + +If there is enough interest here, I can elaborate further on what my rationale has been for using these peptides, and the specific protocol I am following. I will also be posting about all the supplements, medications, and other treatments I have tried. + +My condition has improved so drastically that I have been going on 90 minute bike rides without crashing. In fact, I went on two such rides in a 12-hour window today. Brain fog has mostly elevated, and I feel hopeful for the future again. + +At one point, I was bedridden for a couple of months so it feels like I am coming back from the dead. + +Anyway, hope this information helps somebody here. Don’t hesitate to DM if you have questions. + +Wishing everyone peace and great health. Hang in there! 💪",I’ve taken %70 of these peptides on screen and TA1 only helped my mood and calmness. Everything else doesn’t really seem to do much. +irr-pilot-288,covidlonghaulers,2026-03-13,comment,,"[Upstream reply] +I’ve had a fecal transplant! +Post-covid I was dealing with a ton of recurrent gut issues, including but not limited to indigestion, pain, and diarrhea. I developed acute diverticulitis, which they basically told me was unrelated to my other issues (lol) but after months of fighting various issues I finally got diagnosed with c. diff. + +I just want to mention that any time I went on antibiotics, I felt better. My overall LC symptoms, including neuro, all got better on antibiotics. Then I would come off of them and the symptoms would get worse again. Nobody ever really could explain why and everyone chalked it up to placebo. But I felt better than I had in years while on antibiotics. Every time. With 4 different types. + +After multiple rounds of this, a colonoscopy that showed I actually had practically no diverticula and no colitis, and recurrent attempts to treat the c diff, I was approved for Vowst FMT. + +What the FMT did do: got rid of my c diff, helped my IBS-D symptoms, allowed me to *eat more foods without issue,* possibly helped my malabsorption, improved my baseline and energy a little; I also gained an inexplicable 20lbs I did not need or want post FMT + +What the FMT did not do: cure me, eliminate all digestive problems, or have much of an affect on my neurocognitive issues. + + +FMT improved my quality of life because I was dealing with cyclical dysbiosis, inflammation, and eventually c diff colonization. I have had almost zero lower GI issues since my FMT just over a year ago, which is nice. But I still suffer from the ME/CFS type symptoms. + +--- + +[Upstream reply] +Did you try to address the issues with other treatments first. Fasting has helped me, but it's a pain in the ass (no pun intended).","As a uterus haver in perimeno, fasting is not something that works for me. It makes me feel infinitely worse. Post covid I struggle to feel hungry and often undereat, and making my food intake window smaller doesn’t help that at all either." +irr-pilot-289,covidlonghaulers,2026-03-13,comment,,"[Upstream reply] +Look into MCAS, sources I think are in this sub headlines or just look at posts. Mastcell Activation Syndrome is very common in long haulers, it's basically this cell (that you know from seasonal allergies cause it produces histamines and that why you take antihistamines in spring) that conveniently degranulates as a response to constantly being ' on ' thanks to signalling and stress from covid/pfeiffer and happens to not only produce histamine but also 300? 1000? other chemicals that release into your system and wreck total havoc. From food allergies to nerve jolts to brain fog to anxiety to rashes to gut issues. Constant low grade inflammation will eventually lead to systemic fatique and can lead to me/cfs. MCAS drains you of energy and can even cause PEM fatique, that literally damages your mitochondria. It sucks. But yeah so that's why most protocols for long covid start with taking antihistamines H1/H2 and a mastcellstabilizer like ketotifen, sodium cromolyn in combination with low histamine diet (sources: mastcell360) and natural stabilisers like quecertine or lutoline. Light and sound sensitivity and being unable to read or watch a screen? MCAS too. I have been doing great on ketotifen and quecertine this past year, take a while to get used to but greatly improved quality of life. Read up on it, it's a lot to dive into. + +--- + +[Upstream reply] +Totally this. Once I realised I had MCAS and started medications and a restrictive diet I have improved dramatically. Wish I had had figured this out years ago.","It's also baffling how many doctors and practitioners don't know about it. I have been to the most renound revalidation clinic in my region and they did not know. My hospital's internist didn't as well as my general practitioners. Helers and bioresonance folks would say ' lot of fire ' / ' lot of inflammation '. Ofcourse! Even my diëtist didn't know.  +I always feel like I should have known earlier but I really tried, from laser therapie to HBOT. Just lucky to have found the right clinic and information now. It feels so good to have some answers and to be told symptoms are actually ' normal ' and not ' normal because we hear it more often but we don't know why '." +irr-pilot-290,covidlonghaulers,2026-04-02,comment,,"[Parent post: i function best starved and high lol] + +i know this isn’t healthy. i’m very aware. and im not advocating for others to do this. + +i’ve been trying to balance a very mentally challenging job (surviving grad school). + +when i’m eating as i should, im so sluggish. my brain just doesn’t understand the science. my central nervous system is fucked. i’ve tried keto, gluten free, etc. it’s like my body just can’t handle the energy required to digest food. any food. + +i started smoking weed at night to help my overactive CNS .. and it does a lot. it used to make me paranoid. now i feel artificial covid-induced CNS stress melt away. im relaxed and happy. + +when i’m sober and eating healthy i cannot get through a research article. i barely understand simple stuff. when im high and haven’t eaten all day, i glide thru the article. i have conversations about difficult topics with ease. my memory gets BETTER when im high. wtf? + +and it’s the combination of weed + no food. either alone doesn’t cut it. + + +edit: i want to preface im long hauling since 2022. i have tried almost every single piece of advice found here. + +--- + +[Upstream reply] +hi I getchuuu +Fasting feels amazing when eating is pain and gives lots of clarity + +ZeoIite CIinoptiIoIite might help a bit with the eating things~ (it binds histamines, hvy metals, mycotoxins etc)","Removal Reason: Medical Advice or Treatment Claims – Please do not ask for or provide medical advice, advocate treatments, or make claims about cures. Sharing personal experiences is welcome, but definitive claims should be left to medical professionals and research." +irr-pilot-291,covidlonghaulers,2026-03-22,comment,,"[Upstream reply] +IVIG was on the table for me for years before all this even started, but my post vaccine symptoms are so unusual to these doctors that I’m reluctant to try a biologic without a neurologist I can absolutely trust. + +--- + +[Upstream reply] +IVIG isht a biologic. It doesn’t suppress your immune system……it modulates.",I always thought IVIG was considered a biologic because of immunoglobulin made of donated human plasma…isn’t that what it’s made of? +irr-pilot-292,covidlonghaulers,2026-03-12,comment,,"[Parent post: Dream Team Peptide Stack for LC] + +Disclaimer: Not medical advice, just my personal experience for the past few weeks. + +Hola, my LC family. Thank you all for keeping me sane these past few years. This illness can be incredibly isolating and I am glad to have access to this community in what has undoubtedly been the most trying time of my life. + +Just wanted to drop in and share what’s been working for me for the past few weeks. + +From left to right: **Tirzepatide, Thymosin Alpha 1, TB-500, KPV, MOTS-C, SS-31, NAD+, GHK-Cu, BPC-157, and Epithalon.** + +Tirzepatide has definitely been a game changer. I think it has improved my mitochondrial function and lowered inflammation which is allowing everything else in my protocol to work better. + +If there is enough interest here, I can elaborate further on what my rationale has been for using these peptides, and the specific protocol I am following. I will also be posting about all the supplements, medications, and other treatments I have tried. + +My condition has improved so drastically that I have been going on 90 minute bike rides without crashing. In fact, I went on two such rides in a 12-hour window today. Brain fog has mostly elevated, and I feel hopeful for the future again. + +At one point, I was bedridden for a couple of months so it feels like I am coming back from the dead. + +Anyway, hope this information helps somebody here. Don’t hesitate to DM if you have questions. + +Wishing everyone peace and great health. Hang in there! 💪 + +--- + +[Upstream reply] +So glad you’re improving. SS31 has been great for my brain fog and KPV for my mast cells. Unfortunately I can’t tolerate GLP1s even in tiny doses. What else has been the most potent do you think?","Great to hear SS31 and KPV helping you. It’s quite common to combine SS31 along with MOTS-C to improve mitochondrial function and density. + +Which GLP-1s have you tried? + +KPV has helped my gut function so much. I had pizza for the first time in more than 2 years yesterday without all hell breaking loose. + +I think the Thymosin Alpha and TB500 combo has been slowly stabilizing my immune system as well. + +Apart from the peptides, I think Hyperbaric Oxygen Therapy, Stellate Ganglion Blocks and Red Light Therapy have helped me quite a bit." +irr-pilot-293,covidlonghaulers,2026-03-28,comment,,"[Parent post: Has Nicotine Patches Caused Anyone Flu Like Symptoms?] + +I just started patching with nicotine 4 days ago. I’ve done gum on and off and I tolerate it fairly well. + +I’m on day 4 and have full blown flu symptoms. Flush. Slight fever. Muscle aches. Headache. Nasal drip. + +I’ve had Long COVID for 4.5 years, have had some ups and downs. Was reinfected end of 2025. + +Since I originally got COVID years ago and the Long Covid, my body has been unable to produce a natural fever. Today, I have a natural fever. + +I could just have the flu but what’s different is a proper immune response and that my nicotine patching started just a few days before this. + +Anyone have a similar experience with nicotine patching?","Not exactly the same, but I got extremely hot, feverish and flushed the first few hours of using a patch. Nicotine naïve before that. My shortness of breath resolved after that week of using the patches, so I think it was a good sign." +irr-pilot-294,covidlonghaulers,2026-03-29,comment,,"[Parent post: 3 months of fatigue, brain fog, and sore throat after viral illness — not improving. Looking for advice.] + +# 27M, no prior health issues. + +Got sick at the beginning of January — sore throat, stuffy nose, cough, general weakness, no fever. Didn't get a chance to rest (work ski trip followed immediately by a holiday followed by an intense induction week at a new job). Never fully recovered. + +Around mid-February, new symptoms appeared that persist to this day: + +* **Brain fog / mental exhaustion:** I have physical energy (can go to the gym), but mentally I'm drained. Even simple things like having a conversation feel like they take enormous effort. Worst in the morning, improves in the evening. Caffeine and sugar make it worse. +* **Sore throat every morning:** Wake up with a dry, sore throat daily. Tried mouth taping — didn't help. Has moved to the tonsil area. +* **General malaise:** Wake up every day feeling like I'm coming down with a cold, but never actually get a fever. +* **Post-exertional setbacks:** Every time I push myself (gym, poor sleep, busy social week), I relapse for days. +* **Worse after eating:** Noticed fatigue seems to spike after meals. +* **Feeling warmer / sweating more:** Getting random heatwave sensations throughout the day and sweating more than usual, but no actual fever. + +**What I've done so far:** + +GP suspects post-viral fatigue syndrome (possibly triggered by EBV or COVID in January). Blood work has been done twice: + +* **Full blood count:** Hemoglobin 9.69 mmol/l, hematocrit 0.47, erythrocytes 5.01, MCV 93, RDW 11.7, platelets 351, leukocytes 5.2, neutrophils 2.8, lymphocytes 1.9, monocytes 0.4 — all normal +* **Liver panel (x2):** ALAT 36→29, ASAT 35, ALP 78, GGT 28 — all within range +* **TSH (thyroid):** 1.81 mU/l — normal +* **Glucose (non-fasting):** 4.8 mmol/l — normal +* **ESR (inflammation):** 2.0 — very low +* **EBV serology:** VCA IgG positive, VCA IgM negative, EBNA IgG borderline — suggests past infection, no active/recent infection +* **Hepatitis B:** HBsAg negative, HBcore Ig negative, Anti-HBs 4.45 (negative/no protective antibodies) +* **CMV:** IgG and IgM both negative + +So basically everything looks ""fine"" on paper, but I feel like crap every single day. It's been 3 months with no meaningful improvement. + +Has anyone been through something similar? Anything else I should be testing for or looking into? Would a sleep study be worth pursuing given the morning sore throat pattern? + +Any advice appreciated. This is really starting to affect my quality of life.","No Advice +Lots of Sympathy +I had my latest physical on last Dec 5th +Doc said that I'm doing OK given my age +I said I still feel lousy +Mid December I got a viral infection + +I saw urgent care on New Years + +I fee much worse than before. + +I've been sent to long covid center +Wish me luck + +I can sympathize or empathize. I wish you a speedy healing." +irr-pilot-295,covidlonghaulers,2026-03-26,comment,,"[Parent post: Thoughts on this new study?] + +The big news today (March 25, 2026) is a study just published by researchers at UMC Utrecht and Amsterdam UMC. It’s a pretty significant leap because it provides some of the strongest evidence yet for autoantibodies as a direct cause of Long COVID symptoms. +Here are the key takeaways from the research: +1. The ""Transfer"" Discovery +Researchers took antibodies (specifically IgG) from human Long COVID patients and injected them into mice. The mice began to experience lasting, pain-like symptoms. This suggests that the antibodies themselves are actively driving the condition, rather than it just being ""damage"" left behind by the initial virus. +2. Evidence of Subgroups +The study suggests Long COVID isn't a single ""blanket"" condition. By analyzing blood samples, they identified distinct biological subgroups based on markers of: +Brain injury (using proteins like NFL and GFAP). +Immune system activity (specifically interferon-\beta). +Each subgroup showed different molecular patterns, which explains why one person might have severe ""brain fog"" while another has mostly physical pain or fatigue. +3. New Treatment Pathways +Because this points to harmful antibodies in the blood, it opens the door for treatments designed to ""clean"" or neutralize them, such as: +Plasmapheresis (plasma exchange). +Immunoadsorption (filtering specific antibodies). +Targeted immunotherapy. +Other Recent Context +In addition to this Utrecht study, a massive review of health records for 245 million people was just released (Feb 2026) that actually narrowed the scope of Long COVID. It suggested that while it is absolutely a real multi-organ condition, some earlier studies may have over-attributed certain long-term effects to the virus that were actually due to ""selective testing bias."" +It’s a fascinating time for this research, especially as we move from just describing the symptoms to pinpointing the actual molecular ""drivers."" +What are your thoughts on this study?",I think we knew it was a problem after we forced the first group of animals to suffer. No wonder were like this. Karma on the grandest scale. +irr-pilot-296,covidlonghaulers,2026-03-31,comment,,"[Parent post: Anger and long covid] + +Curious to hear people's experience with increased anger after getting long covid. I think it's a double whammy for me. The anger of feeling limited by my situation but desiring to be living a more active lifestyle and also there's a direct increase of irritability during a crash. + +I'm in a crash now and I find myself not just angry but enraged and constantly on edge. It's way more amplified than when I'm pacing well. I just have to take some space for myself and not lash out at people or allow myself to ruminate on issues all day. + +--- + +[Upstream reply] +Mcassssssss makes and ass out of all of us. There are two peer reviewed articles obnoxious mcas causing psych issues. Weinstock is author. Basically, there are mast cells in your brain.  + +Of course, Anger can exist without this and is justified too… Or it could just be nervous system haywire.  + +My rage was mcas. Pepcid stopped it and I was like wtf.",On Zyrtec and pepcid and have been for a few months. Honestly I don't know if it's helping. I'm making slow improvement 3 years in. Not sure how much is due to it or the natural process. +irr-pilot-297,covidlonghaulers,2026-03-24,comment,,"[Parent post: 3.5 years with this, recovered to the point where I can live a normal life IF I don't work] + +Currently I can work around 3hrs a day on the computer. Any more than that and I'll feel like shit. If I work 3hrs and go for a walk I'll feel like shit. It's like a cap. + +But, if I don't work in a week, I seem to be recovered. It seems like cognitive load is the biggest sap of energy for me. + +Anyone else in a similar situation?","yes!! Please look at my post history! +But what increased my cognitive capacity were the following +Anticoagulant, antivirals and antihistamines +Eliquis or Nattokinase, Maraviroc , Rapamycin , Pepcid and Ketotifen. + +Also adjacent testosterone, estrogen and iron supplements towards the end of this chapter. I wasn’t always iron deficient. And adderall has also been a steady companion. + +All of this Helped me increased my cognitive stamina to almost normal. I still run the risk of overstimulation." +irr-pilot-298,covidlonghaulers,2026-03-27,comment,,"[Upstream reply] +It all depends on what snps have mutations. + +From your symptoms I would guess MTRR, MTHFR, & Comt are likely culprits. + +Have you ever had your homocysteine checked? + +--- + +[Upstream reply] +No I never have, I don’t even know where to get a prescription to order that test. I wonder if I can get it done with my physical. Are there things I can do in advance to reduce these symptoms if I have this mutation. See if any solutions work ahead of the testing? Kind of work backwards in a sense?","Homocysteine is a simple blood lab any Md/Np can order it. + +Genetic testing is outta pocked and you would order a kit shipped to home. + +Working backwards is hard because 1 of the most important factors is what form proper folate & b12 you can take. + +I personally can take methyl B’s but you might react negatively to them. + +The most important thing is to eliminate all foods/supps with “folic acid” in the ingredients. + +You want to get your folate from diet and Methyl folate or folinic acid. You also will need b12 as well as they work together. But there is a lot more than just those 2 vitamins." +irr-pilot-299,covidlonghaulers,2026-03-12,comment,,"[Parent post: Low Ferretin, Vitamin D and B1] + +Has anyone that's had low levels of ferretin, vitamin D or b1 seen improvements after increasing these? + +Ferretin = 12 + +Vitamin d = 28 + +B1 plasma = 6","Vitamin B1 helped me with cognitive issues, provided a general good feeling and I think one of the head pains. Vitamin D very large doses helped me with a lot, including food reactions. Constantly taking higher than recommended doses knowing I don't go outside much in the winter. Iron supplements helped me with several issues like tingling." +irr-pilot-300,covidlonghaulers,2026-03-16,comment,,"[Upstream reply] +Where are you catching it from? + +--- + +[Upstream reply] +This time I’m not sure, I haven’t left home at all for at least 2 weeks while I’ve been recovering from the concussion. The only thing I can think is not being careful enough with grocery or takeout deliveries. I always wear N95s when I go out and have always been extremely careful +about germs even prior to 2020 so i think it’s just luck","Covid causes immune dysfunction which makes you more susceptible to infection. Were you in a hospital or dr office for your concussion? Any visitors? Do you live in an apartment with shared hallways/ elevators? + +I doubt you are catching Covid from fomite transmission. Most likely cause is shared air." diff --git a/docs/irr_pilot_500/SAMPLING_METHODOLOGY.md b/docs/irr_pilot_500/SAMPLING_METHODOLOGY.md index 54fe4b0..495b0a8 100644 --- a/docs/irr_pilot_500/SAMPLING_METHODOLOGY.md +++ b/docs/irr_pilot_500/SAMPLING_METHODOLOGY.md @@ -1,14 +1,27 @@ # IRR Pilot 500 — Sampling Methodology This document describes how the 500-unit inter-coder reliability (IRR) sample -in this directory was drawn. It applies to the files in this folder: - -- `coding_input.csv` — the 500 sampled units, distributed to coders -- `ai_labels.csv` — analyst-only file with stratum labels and AI-pipeline output - for each sample -- `coder_output_template.csv` — empty form for coders to fill in -- `source/` — the underlying source data (filtered JSON, SQLite DB, AI pipeline - outputs) from which the sample was drawn +in this directory was drawn. It applies to the tracked artifacts in this +folder: + +- [`coding_input.csv`](./coding_input.csv) — the 500 sampled units, + distributed to coders (one row per sample, columns: sample_id, subreddit, + post_date, unit_type, title, parent_context, post_text) +- [`ai_labels.csv`](./ai_labels.csv) — analyst-only file with stratum labels + and AI-pipeline output for each sample (columns: sample_id, source_post_id, + stratum, ai_drug_count, ai_drugs, ai_sentiments, ai_signal_strengths, + keyword_match) +- [`coder_output_template.csv`](./coder_output_template.csv) — empty form for + coders to fill in (one row per sample_id, blank fields) + +The codebook used by this pilot is the same as the one used for the original +300-sample pilot: see [`../irr_pilot/CODING_INSTRUCTIONS.md`](../irr_pilot/CODING_INSTRUCTIONS.md) +(or the PDF version). It is **not** duplicated in this folder. + +The underlying source data (filtered JSON, SQLite DB, AI pipeline outputs) +from which this sample was drawn lives outside git in +`data/irr_pilot_500/source/` (large; not redistributed). The reproducibility +section at the bottom shows how to regenerate it. Reproducibility scripts: `scripts/convert_jsonl_to_source.py` and `scripts/sample_for_coding.py` (in the project repository). diff --git a/docs/irr_pilot_500/ai_labels.csv b/docs/irr_pilot_500/ai_labels.csv new file mode 100644 index 0000000..503e9a3 --- /dev/null +++ b/docs/irr_pilot_500/ai_labels.csv @@ -0,0 +1,501 @@ +sample_id,source_post_id,stratum,ai_drug_count,ai_drugs,ai_sentiments,ai_signal_strengths,keyword_match +irr-pilot-001,hmgly79,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-002,hnhtxcu,no_ai_drug_random,0,,,,no +irr-pilot-003,hp09t7w,no_ai_drug_random,0,,,,no +irr-pilot-004,hktqlme,ai_found_drug,2,statins|ivermectin,positive|mixed,moderate|weak,yes +irr-pilot-005,ho1pocl,ai_found_drug,3,alpha lipoic acid|cymbalta|potassium,positive|positive|positive,weak|moderate|moderate,yes +irr-pilot-006,hivvonz,ai_found_drug,3,methylphenidate|ritalin|glutamine,mixed|mixed|negative,weak|weak|strong,yes +irr-pilot-007,r0jlwo,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-008,hmutmtg,ai_found_drug,2,vitamins|supplements,positive|mixed,strong|strong,yes +irr-pilot-009,hjpekyp,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-010,hkauece,no_ai_drug_random,0,,,,no +irr-pilot-011,hiytu9j,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-012,hky5vqr,ai_found_drug,3,taurine|l-theanine|melatonin,positive|positive|positive,strong|strong|moderate,yes +irr-pilot-013,rsxc91,no_ai_drug_random,0,,,,no +irr-pilot-014,rcr7gz,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-015,hptx60g,ai_found_drug,1,nicotine,positive,strong,yes +irr-pilot-016,hoq941e,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-017,hp6fxec,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-018,hqkf2ei,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-019,hnx7k3u,no_ai_drug_random,0,,,,no +irr-pilot-020,hnc601f,ai_found_drug,2,omega-3|claritin,negative|negative,strong|strong,yes +irr-pilot-021,hm67tx8,ai_found_drug,1,vaccine,positive,strong,yes +irr-pilot-022,hkm283s,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-023,ho00ywj,ai_found_drug,2,abilify|mirtazapine,negative|negative,moderate|moderate,no +irr-pilot-024,hoy4wat,ai_found_drug,2,nystatin|antibiotics,positive|negative,moderate|strong,yes +irr-pilot-025,hmzu29e,no_ai_drug_random,0,,,,no +irr-pilot-026,hllda23,ai_found_drug,1,ct contrast dye,negative,moderate,no +irr-pilot-027,hm6fso4,ai_found_drug,2,pediatric vaccine|vaccine,positive|positive,moderate|strong,no +irr-pilot-028,hkfxhus,no_ai_drug_random,0,,,,no +irr-pilot-029,hko25wr,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-030,rsar1a,no_ai_drug_random,0,,,,no +irr-pilot-031,hj632ga,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-032,hoe2zbq,no_ai_drug_random,0,,,,no +irr-pilot-033,hq0pree,no_ai_drug_random,0,,,,no +irr-pilot-034,qxfmld,ai_found_drug,1,narcotics,positive,weak,yes +irr-pilot-035,hnpsu9d,ai_found_drug,1,fexofenadine,positive,strong,yes +irr-pilot-036,hj1rqim,no_ai_drug_random,0,,,,no +irr-pilot-037,hnjkzq4,ai_found_drug,1,vaccine,mixed,strong,no +irr-pilot-038,ho562ye,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-039,hoamm1t,no_ai_drug_random,0,,,,no +irr-pilot-040,hlwtl6t,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-041,hq17jwl,no_ai_drug_random,0,,,,no +irr-pilot-042,hpgiqnb,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-043,ho59ahz,ai_found_drug,1,adderall,positive,moderate,yes +irr-pilot-044,hn3gcea,ai_found_drug,1,cymbalta,negative,strong,yes +irr-pilot-045,hnh0wge,ai_found_drug,2,atenolol|metoprolol,positive|negative,weak|strong,no +irr-pilot-046,hkyoxzc,no_ai_drug_random,0,,,,no +irr-pilot-047,hoyczpo,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-048,qpqqfr,ai_found_drug,1,black seed oil,positive,strong,yes +irr-pilot-049,hkmh5r2,ai_found_drug,4,sertraline|zoloft|fluoxetine|ssri,negative|negative|neutral|negative,strong|strong|weak|moderate,yes +irr-pilot-050,hnglev0,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-051,hpzhxrp,ai_found_drug,2,diuretic|magnesium,negative|positive,strong|strong,yes +irr-pilot-052,hpah3r5,ai_found_drug,1,non drowsy antihistamines,positive,moderate,no +irr-pilot-053,hoek8qm,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-054,hjokw0j,no_ai_drug_random,0,,,,no +irr-pilot-055,hp2rdbu,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-056,hjcwcwo,ai_found_drug,1,serrapeptase,positive,weak,yes +irr-pilot-057,how93jt,ai_found_drug,1,ginkgo biloba,neutral,weak,yes +irr-pilot-058,hq2i1jr,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-059,hjm13ld,ai_found_drug,2,pfizer|vaccine,positive|positive,moderate|moderate,no +irr-pilot-060,hkev99r,ai_found_drug,1,aloe vera juice,positive,weak,no +irr-pilot-061,hq22gmq,no_ai_drug_random,0,,,,no +irr-pilot-062,hmh7jry,ai_found_drug,3,nebulizer|albuterol|inhaler,positive|positive|positive,strong|strong|moderate,no +irr-pilot-063,hmt8oln,no_ai_drug_random,0,,,,no +irr-pilot-064,hpls4ok,no_ai_drug_random,0,,,,no +irr-pilot-065,hjypwqn,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-066,r292d1,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-067,homuics,ai_found_drug,1,pfizer,mixed,weak,no +irr-pilot-068,hj3c5pr,ai_found_drug,2,vaccine|pfizer vaccine,negative|negative,strong|strong,yes +irr-pilot-069,hlpix1f,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-070,hq3wm91,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-071,hpeen1q,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-072,hoky50o,ai_found_drug,1,heart ablation procedure,positive,weak,no +irr-pilot-073,rb6u52,no_ai_drug_random,0,,,,no +irr-pilot-074,hnqlqh9,ai_found_drug,2,alpha blocker|ssri,negative|negative,weak|strong,yes +irr-pilot-075,hnftqo7,ai_found_drug,1,vaccine,negative,strong,no +irr-pilot-076,hncgjfg,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-077,hnm1bsd,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-078,hm4kkhv,no_ai_drug_random,0,,,,no +irr-pilot-079,hmmr1zz,ai_found_drug,2,damiana|blue vervain,positive|positive,strong|strong,no +irr-pilot-080,hmxp30x,ai_found_drug,2,medication|probiotics,positive|positive,moderate|weak,no +irr-pilot-081,hq1f80s,no_ai_drug_random,0,,,,no +irr-pilot-082,hqf82eu,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-083,hpx18sk,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-084,hm7uzj0,ai_found_drug,1,vaccine,negative,strong,yes +irr-pilot-085,hprtr23,ai_found_drug,1,metoprolol,positive,moderate,no +irr-pilot-086,hq57pji,ai_found_drug,1,beta blockers,positive,moderate,yes +irr-pilot-087,hl9yan1,ai_found_drug,1,nattokinase,negative,weak,yes +irr-pilot-088,hjg5hdo,no_ai_drug_random,0,,,,no +irr-pilot-089,hmlethy,ai_found_drug,2,powerade zero|electrolytes,negative|negative,weak|moderate,no +irr-pilot-090,hppdbmm,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-091,hmegi2l,ai_found_drug,1,omeprazole,negative,weak,yes +irr-pilot-092,hk3wydk,ai_found_drug,1,vaccine,negative,weak,yes +irr-pilot-093,hmpoau8,ai_found_drug,1,pfizer,mixed,strong,yes +irr-pilot-094,hj8tb79,no_ai_drug_random,0,,,,no +irr-pilot-095,hjcs7pi,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-096,hp8wj4c,no_ai_drug_random,0,,,,no +irr-pilot-097,howwqu8,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-098,hklhcx9,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-099,hnmuuwo,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-100,hkw2bl6,ai_found_drug,3,lumbrokinase|serrapeptase|nattokinase,positive|positive|positive,strong|strong|strong,yes +irr-pilot-101,hnmmy02,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-102,hn3quji,no_ai_drug_random,0,,,,no +irr-pilot-103,hqqlz07,ai_found_drug,1,vaccine,negative,strong,no +irr-pilot-104,hj43t22,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-105,r89epc,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-106,hmgn2k6,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-107,hm1qup3,ai_found_drug,1,moderna vaccine,negative,strong,no +irr-pilot-108,hns77ph,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-109,hjfrwkv,no_ai_drug_random,0,,,,no +irr-pilot-110,hn7f69s,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-111,hlyhwme,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-112,hphmgfz,no_ai_drug_random,0,,,,no +irr-pilot-113,hqa4mep,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-114,hnw89o7,ai_found_drug,1,prednisone,positive,moderate,yes +irr-pilot-115,hnsr9iv,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-116,hqlqg2b,ai_found_drug,1,effexor,negative,strong,yes +irr-pilot-117,hk4svp7,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-118,hokyty9,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-119,hne5cw3,no_ai_drug_random,0,,,,no +irr-pilot-120,ho0r6m5,ai_found_drug,3,sertraline|zoloft|ssri,mixed|positive|positive,strong|weak|strong,yes +irr-pilot-121,hk29yk5,ai_found_drug,2,acetaminophen|tylenol,negative|negative,strong|strong,yes +irr-pilot-122,hp2earf,ai_found_drug,2,pain relief|medication,positive|positive,moderate|weak,no +irr-pilot-123,hn1t8ig,ai_found_drug,4,vitamin a|vitamin k|vitamin e|vitamin d,positive|positive|positive|positive,strong|strong|strong|strong,no +irr-pilot-124,hov083a,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-125,hol82el,ai_found_drug,2,serrapeptase|nattokinase,positive|positive,strong|strong,yes +irr-pilot-126,hn7tqy3,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-127,hp7z0e5,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-128,hn50jy3,ai_found_drug,1,gabapentin,positive,moderate,yes +irr-pilot-129,hp689zz,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-130,hnxydsy,ai_found_drug,1,vitamins,negative,moderate,yes +irr-pilot-131,hl6yarr,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-132,hjfhuep,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-133,hq15x76,no_ai_drug_random,0,,,,no +irr-pilot-134,hqig9tm,ai_found_drug,3,bronchodilators|inhalers|albuterol,negative|negative|negative,strong|strong|strong,yes +irr-pilot-135,hmwcm1f,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-136,hlas9ju,ai_found_drug,2,h1 antihistamines|hydroxyzine,positive|positive,strong|strong,no +irr-pilot-137,hq78qvk,ai_found_drug,2,tea|mullein,positive|positive,strong|strong,no +irr-pilot-138,hp03ig5,ai_found_drug,2,super strength turmeric|turmeric,positive|positive,weak|weak,yes +irr-pilot-139,hq896p6,no_ai_drug_random,0,,,,no +irr-pilot-140,hkv64op,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-141,hqk96b0,ai_found_drug,1,maraviroc,positive,weak,yes +irr-pilot-142,hlyl7fb,no_ai_drug_random,0,,,,no +irr-pilot-143,hluw2tn,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-144,hogkw02,no_ai_drug_random,0,,,,no +irr-pilot-145,hq92r3o,no_ai_drug_random,0,,,,no +irr-pilot-146,hoph1vk,ai_found_drug,1,nattokinase,positive,moderate,no +irr-pilot-147,hlluypw,ai_found_drug,9,goji berry|cloves|beet powder|star anise|elderberry|hibiscus|spirulina|turmeric|supplements,positive|positive|positive|positive|positive|positive|positive|positive|positive,weak|weak|weak|weak|weak|weak|weak|weak|weak,no +irr-pilot-148,hpw7dmg,ai_found_drug,2,fluconazole|vitamin d3,positive|positive,strong|strong,yes +irr-pilot-149,hl5t3of,ai_found_drug,1,inhalers,positive,weak,no +irr-pilot-150,hk95pnu,ai_found_drug,2,flu shot|pfizer,negative|negative,moderate|weak,no +irr-pilot-151,hofzsmb,no_ai_drug_random,0,,,,no +irr-pilot-152,hnsdy9j,ai_found_drug,1,aspirin,positive,moderate,yes +irr-pilot-153,hkdxxnb,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-154,hqkmdou,ai_found_drug,1,lidocaine,negative,strong,yes +irr-pilot-155,hkbcokm,ai_found_drug,1,serrapeptase,positive,weak,no +irr-pilot-156,hq2mtrj,ai_found_drug,1,amitriptyline,positive,strong,yes +irr-pilot-157,hoxamz7,no_ai_drug_random,0,,,,no +irr-pilot-158,hjg5k9r,no_ai_drug_random,0,,,,no +irr-pilot-159,hjesb5r,no_ai_drug_random,0,,,,no +irr-pilot-160,hmut3nu,ai_found_drug,1,vaccine,positive,strong,no +irr-pilot-161,hoxjpk7,ai_found_drug,8,infrared light therapy|red light therapy|acetaminophen|cbg|tylenol|vitamin d|diphenhydramine|cbd,positive|positive|positive|positive|positive|positive|positive|positive,weak|weak|moderate|strong|moderate|weak|weak|strong,yes +irr-pilot-162,hkcsva7,ai_found_drug,1,choline,positive,strong,no +irr-pilot-163,hjdmtmv,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-164,hl5bnc6,no_ai_drug_random,0,,,,no +irr-pilot-165,hl1julp,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-166,hpqecjj,no_ai_drug_random,0,,,,no +irr-pilot-167,hkretro,ai_found_drug,3,nuun tablets|trioral|electrolytes,positive|positive|positive,strong|strong|strong,no +irr-pilot-168,hm1c51a,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-169,hnulvrw,ai_found_drug,3,statins|magnesium|pfizer vaccine,positive|positive|positive,moderate|weak|weak,yes +irr-pilot-170,hjes95o,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-171,hl4etgy,no_ai_drug_random,0,,,,no +irr-pilot-172,hl9jq96,no_ai_drug_random,0,,,,no +irr-pilot-173,hkjfplb,ai_found_drug,1,nasal spray,positive,strong,no +irr-pilot-174,hmjf2g8,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-175,hlttvfi,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-176,hk0ecnx,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-177,hoviccf,no_ai_drug_random,0,,,,no +irr-pilot-178,hk2bkgm,ai_found_drug,1,ppis,negative,strong,no +irr-pilot-179,hnnl9fj,no_ai_drug_random,0,,,,no +irr-pilot-180,hkdzk02,ai_found_drug,1,pfizer,negative,strong,no +irr-pilot-181,ro1rmx,no_ai_drug_random,0,,,,no +irr-pilot-182,hk2mpe9,ai_found_drug,1,vaccine,mixed,strong,no +irr-pilot-183,hkzdcdd,ai_found_drug,2,antacid|famotidine,positive|positive,weak|weak,yes +irr-pilot-184,hqfwdg5,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-185,hqcptir,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-186,hlapbgy,ai_found_drug,4,cannabinoid|cbc|gabapentin|cbd,positive|positive|negative|negative,strong|strong|strong|strong,yes +irr-pilot-187,hpdyw2p,no_ai_drug_random,0,,,,no +irr-pilot-188,hj95lcl,ai_found_drug,1,coq10,positive,strong,yes +irr-pilot-189,hkwxzxy,ai_found_drug,1,antiviral,positive,strong,no +irr-pilot-190,hp58yku,no_ai_drug_random,0,,,,no +irr-pilot-191,hngnwyz,ai_found_drug,2,grass fed butter|ghee,positive|positive,strong|strong,yes +irr-pilot-192,hl2hxes,ai_found_drug,5,pain relief pm|acetaminophen|hydroxyzine|melatonin|antihistamine,positive|positive|positive|negative|positive,weak|weak|moderate|weak|moderate,yes +irr-pilot-193,hkw5ihf,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-194,hk4vvf8,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-195,hnqp0mb,no_ai_drug_random,0,,,,no +irr-pilot-196,hpvklvh,ai_found_drug,3,sativa|indica|edibles,positive|negative|positive,strong|strong|strong,no +irr-pilot-197,hov0wcn,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-198,hmh4yef,ai_found_drug,1,supplements,positive,weak,yes +irr-pilot-199,hn5wxgh,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-200,hpbdpj8,ai_found_drug,1,drugs,positive,strong,no +irr-pilot-201,hp2lb12,ai_found_drug,1,magnesium,negative,weak,yes +irr-pilot-202,hor5lz8,ai_found_drug,2,low dose prednisone|prednisone,positive|positive,strong|strong,yes +irr-pilot-203,hnfajah,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-204,hjo5qrq,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-205,hjgojpw,ai_found_drug,1,antibiotics,negative,strong,no +irr-pilot-206,hk0upwi,ai_found_drug,1,antibiotics,negative,strong,yes +irr-pilot-207,hql8kea,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-208,hovepi5,no_ai_drug_random,0,,,,no +irr-pilot-209,hm40y1l,ai_found_drug,2,albuterol|inhaler,positive|positive,moderate|moderate,no +irr-pilot-210,hjss401,ai_found_drug,1,claritin,negative,strong,yes +irr-pilot-211,hnaf2qt,no_ai_drug_random,0,,,,no +irr-pilot-212,hmtgcfm,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-213,hlhrpjl,ai_found_drug,1,fexofenadine,positive,strong,yes +irr-pilot-214,hlcm5qq,ai_found_drug,1,shot,negative,weak,no +irr-pilot-215,hkq023p,no_ai_drug_random,0,,,,no +irr-pilot-216,hnkwot2,ai_found_drug,1,ox bile salts,positive,strong,no +irr-pilot-217,hjke2l2,no_ai_drug_random,0,,,,no +irr-pilot-218,hnhcdqg,ai_found_drug,1,gabapentin,positive,moderate,yes +irr-pilot-219,ho77f0o,ai_found_drug,1,tyrosine,positive,moderate,yes +irr-pilot-220,hm6rorz,ai_found_drug,1,heat pad,positive,moderate,yes +irr-pilot-221,hkdpv7h,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-222,hmmn1lm,ai_found_drug,10,oregano oil|eyebright|nettle|yellow dock|seamoss|bladderwrack|feverfew|burdock root|damiana|blue vervain,positive|positive|positive|positive|positive|positive|positive|positive|positive|positive,weak|weak|weak|weak|weak|weak|strong|weak|strong|strong,no +irr-pilot-223,hpfz374,ai_found_drug,1,glasses,positive,moderate,no +irr-pilot-224,hkayt5h,no_ai_drug_random,0,,,,no +irr-pilot-225,hk2mhuc,ai_found_drug,1,vaccine,positive,strong,no +irr-pilot-226,hou5oa8,ai_found_drug,2,atenolol|ssri,positive|positive,weak|strong,yes +irr-pilot-227,hptm28k,no_ai_drug_random,0,,,,no +irr-pilot-228,hk6sw3f,ai_found_drug,1,taurine,positive,weak,no +irr-pilot-229,hleq99k,ai_found_drug,1,gaba,positive,moderate,yes +irr-pilot-230,hm978sh,ai_found_drug,3,coconut milk|coconut cream|coconut oil,positive|positive|positive,moderate|moderate|moderate,no +irr-pilot-231,hk6p7mg,ai_found_drug,1,medication,positive,moderate,yes +irr-pilot-232,hqppenv,no_ai_drug_random,0,,,,no +irr-pilot-233,hl30m8g,no_ai_drug_random,0,,,,no +irr-pilot-234,hlnk7v2,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-235,hoauz2f,ai_found_drug,2,inflammation killer|steroids,positive|mixed,moderate|moderate,no +irr-pilot-236,hjsktny,ai_found_drug,2,motion sickness pills|meclizine,positive|positive,strong|weak,no +irr-pilot-237,hlxtx7y,ai_found_drug,1,blood pressure meds,positive,weak,no +irr-pilot-238,hqqmsjs,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-239,hq41yhp,ai_found_drug,1,nac,positive,strong,yes +irr-pilot-240,hkidr8y,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-241,hiy8ic6,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-242,hpq2t3k,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-243,hnvn0cb,ai_found_drug,1,metoprolol,positive,weak,yes +irr-pilot-244,hopbji8,ai_found_drug,1,antibiotics,negative,moderate,no +irr-pilot-245,hmcb6mk,no_ai_drug_random,0,,,,no +irr-pilot-246,hj8qvmp,no_ai_drug_random,0,,,,no +irr-pilot-247,hk0wmz6,ai_found_drug,1,melatonin,negative,strong,yes +irr-pilot-248,hqji9de,ai_found_drug,1,ibuprofen,positive,weak,yes +irr-pilot-249,hjtmd0d,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-250,hordmmv,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-251,hj9ijv2,ai_found_drug,1,nasal spray,mixed,weak,no +irr-pilot-252,hjt3213,ai_found_drug,2,tums|omeprazole,positive|positive,weak|weak,no +irr-pilot-253,hnb2sty,ai_found_drug,2,famotidine|h2 blocker,mixed|mixed,moderate|moderate,yes +irr-pilot-254,hlq0y7g,ai_found_drug,1,metoclopramide,positive,strong,yes +irr-pilot-255,hlzmq5s,ai_found_drug,1,omeprazole,negative,strong,yes +irr-pilot-256,hjznxqr,no_ai_drug_random,0,,,,no +irr-pilot-257,hq7lc7g,no_ai_drug_random,0,,,,no +irr-pilot-258,hkrfxsv,no_ai_drug_random,0,,,,no +irr-pilot-259,hp9mz88,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-260,hqpjf2h,ai_found_drug,1,vitamin b12,negative,moderate,yes +irr-pilot-261,hox2ph0,ai_found_drug,1,pfizer vaccine,neutral,weak,no +irr-pilot-262,hmpnnso,ai_found_drug,1,flu shot,positive,strong,no +irr-pilot-263,hpq35wx,ai_found_drug,3,inhalers|famotidine|fexofenadine,negative|positive|positive,strong|strong|strong,yes +irr-pilot-264,hqgv5xi,ai_found_drug,2,aspirin|antihistamine,positive|positive,strong|moderate,yes +irr-pilot-265,ho82ri7,ai_found_drug,1,pfizer,negative,moderate,no +irr-pilot-266,hk3opyh,ai_found_drug,1,mrna vaccine,positive,moderate,no +irr-pilot-267,hnwxg3z,ai_found_drug,1,tylenol,positive,strong,yes +irr-pilot-268,hq3rf5a,ai_found_drug,2,steroids|prednisone,positive|positive,strong|strong,yes +irr-pilot-269,hmlkwnp,no_ai_drug_random,0,,,,no +irr-pilot-270,hotpn09,ai_found_drug,1,metoprolol,positive,moderate,no +irr-pilot-271,qrap3v,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-272,hjm675f,ai_found_drug,1,melatonin,positive,moderate,yes +irr-pilot-273,hpx6ad7,ai_found_drug,1,pfizer,mixed,strong,yes +irr-pilot-274,hn625kj,ai_found_drug,1,therapist,positive,moderate,yes +irr-pilot-275,hpixpz9,no_ai_drug_random,0,,,,no +irr-pilot-276,hndfnfq,ai_found_drug,1,methylprednisolone,positive,strong,yes +irr-pilot-277,hn5jp21,no_ai_drug_random,0,,,,no +irr-pilot-278,hjynovb,ai_found_drug,1,potassium,positive,weak,no +irr-pilot-279,hmxsily,ai_found_drug,1,edibles,positive,moderate,no +irr-pilot-280,hql6meo,ai_found_drug,1,blood pressure medication,positive,moderate,no +irr-pilot-281,hk6ft3m,ai_found_drug,3,oral rehydration solution|liquid iv|trioral,positive|positive|positive,strong|strong|strong,no +irr-pilot-282,hkauntx,ai_found_drug,1,low histamine probiotic,positive,strong,yes +irr-pilot-283,hqevxfy,ai_found_drug,1,natural antihistamine,positive,weak,yes +irr-pilot-284,hq7nk3l,ai_found_drug,1,phgg,positive,strong,no +irr-pilot-285,hp75h8r,ai_found_drug,1,shilajit,positive,weak,no +irr-pilot-286,hkr4vsn,ai_found_drug,1,antihistamine,positive,weak,yes +irr-pilot-287,hmh340e,ai_found_drug,1,inhaler,mixed,moderate,yes +irr-pilot-288,hn5qqmu,ai_found_drug,1,pt,positive,weak,yes +irr-pilot-289,hq2vuc8,ai_found_drug,1,melatonin,negative,strong,yes +irr-pilot-290,hnhbihd,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-291,raav77,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-292,hm0ogwk,ai_found_drug,2,anti-autoimmune|low dose naltrexone,positive|positive,strong|strong,yes +irr-pilot-293,hlegr9u,ai_found_drug,1,vaccine,mixed,moderate,yes +irr-pilot-294,hjmdrfx,no_ai_drug_random,0,,,,no +irr-pilot-295,hmrtjgy,ai_found_drug,6,mct oil|frankincense essential oil|brain vitamins|acai|antioxidants|vitamin c,positive|positive|positive|positive|positive|positive,weak|strong|weak|weak|weak|weak,yes +irr-pilot-296,hl9shch,ai_found_drug,1,nac,negative,strong,yes +irr-pilot-297,hlbs5va,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-298,qlnee1,ai_found_drug,1,amoxicillin,negative,strong,yes +irr-pilot-299,hkvtc0w,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-300,hjpbq5w,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-301,hl6ae7f,ai_found_drug,1,pfizer,mixed,strong,no +irr-pilot-302,hke4j40,ai_found_drug,2,vitamin|niacin,positive|positive,moderate|weak,yes +irr-pilot-303,hk5jojx,no_ai_drug_random,0,,,,no +irr-pilot-304,hqmxafj,no_ai_drug_random,0,,,,no +irr-pilot-305,rhvzj0,ai_found_drug,1,thc,negative,strong,no +irr-pilot-306,hkxrp25,no_ai_drug_random,0,,,,no +irr-pilot-307,hki82tg,no_ai_drug_random,0,,,,no +irr-pilot-308,hoxelzl,no_ai_drug_random,0,,,,no +irr-pilot-309,hpd4hsv,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-310,hoc4gbw,no_ai_drug_random,0,,,,no +irr-pilot-311,hqne416,ai_found_drug,1,vaccine,negative,strong,no +irr-pilot-312,hjybeqh,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-313,hjgt65h,no_ai_drug_random,0,,,,no +irr-pilot-314,hpxqyfy,ai_found_drug,2,high dose vitamin d|vitamin d,positive|positive,strong|strong,yes +irr-pilot-315,hpuxvl7,ai_found_drug,1,vaccine,negative,weak,yes +irr-pilot-316,ho29jly,no_ai_drug_random,0,,,,no +irr-pilot-317,hpi7wzd,ai_found_drug,1,supplements,positive,weak,no +irr-pilot-318,hnc9j6p,ai_found_drug,1,hops,positive,weak,no +irr-pilot-319,hpdpxot,ai_found_drug,1,famotidine,positive,strong,yes +irr-pilot-320,hkhxc4k,ai_found_drug,1,moderna vaccine,negative,strong,no +irr-pilot-321,hpo210w,ai_found_drug,1,pfizer,negative,strong,no +irr-pilot-322,hqgs85w,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-323,hl0sek3,ai_found_drug,1,supplements,mixed,weak,yes +irr-pilot-324,ho871vr,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-325,ho69i3n,ai_found_drug,1,factor de transferencia,negative,moderate,no +irr-pilot-326,hk2n092,ai_found_drug,1,vaccine,mixed,moderate,no +irr-pilot-327,hj7utsd,ai_found_drug,2,glutathione|nac,negative|positive,moderate|weak,yes +irr-pilot-328,hof3728,ai_found_drug,1,spironolactone,negative,weak,no +irr-pilot-329,hkb8aq1,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-330,ho7fuo9,no_ai_drug_random,0,,,,no +irr-pilot-331,hqf6uz7,ai_found_drug,1,intermittent fasting,positive,moderate,no +irr-pilot-332,hjjrg63,ai_found_drug,1,psychiatric medical intervention,positive,moderate,no +irr-pilot-333,hj001w5,ai_found_drug,1,allergy meds,negative,strong,no +irr-pilot-334,hkeolpx,ai_found_drug,1,vaccine,negative,strong,no +irr-pilot-335,hk68isr,ai_found_drug,1,ibuprofen,positive,strong,yes +irr-pilot-336,hmm9xe8,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-337,hmu8678,ai_found_drug,1,pfizer vaccine,negative,strong,yes +irr-pilot-338,hkubpl8,no_ai_drug_random,0,,,,no +irr-pilot-339,hox2sr2,ai_found_drug,1,panic attack medication,negative,strong,yes +irr-pilot-340,hk3bsya,ai_found_drug,1,medication,positive,weak,no +irr-pilot-341,hlqkygd,ai_found_drug,1,miralax,positive,strong,no +irr-pilot-342,hplo4tr,no_ai_drug_random,0,,,,no +irr-pilot-343,hqgrrh6,no_ai_drug_random,0,,,,no +irr-pilot-344,hnmu5fx,ai_found_drug,1,bentyl,positive,strong,yes +irr-pilot-345,hk19p3j,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-346,hp2qnc1,no_ai_drug_random,0,,,,no +irr-pilot-347,hj1c74n,ai_found_drug,1,pfizer,positive,weak,no +irr-pilot-348,hq57fkf,ai_found_drug,1,nac,mixed,moderate,yes +irr-pilot-349,hq2js1y,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-350,hpc5iht,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-351,hlzlksn,no_ai_drug_random,0,,,,no +irr-pilot-352,hk48e4x,ai_found_drug,1,vaccine,negative,weak,no +irr-pilot-353,hkfq8qb,ai_found_drug,6,cordyceps|arginine|chamomile|ashwagandha|supplements|glutamine,positive|positive|positive|positive|positive|positive,weak|weak|weak|weak|moderate|weak,no +irr-pilot-354,hmugq9k,ai_found_drug,1,acupuncture,positive,strong,no +irr-pilot-355,hq1ty0f,ai_found_drug,1,rubber mouthguard,negative,strong,no +irr-pilot-356,hkz97sw,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-357,hq1n120,ai_found_drug,2,ibguard|peppermint oil,positive|positive,strong|strong,yes +irr-pilot-358,qrzr6n,ai_found_drug,1,clindamycin,negative,strong,no +irr-pilot-359,hpzhlri,no_ai_drug_random,0,,,,no +irr-pilot-360,reblr0,ai_found_drug,2,pneumonia treatment|pfizer vaccine,positive|positive,weak|strong,no +irr-pilot-361,hmyh12t,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-362,hl06vi8,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-363,hkyjs2m,ai_found_drug,1,local anesthetic,positive,strong,no +irr-pilot-364,hnhsrko,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-365,hk921fg,no_ai_drug_random,0,,,,no +irr-pilot-366,hlc540k,no_ai_drug_random,0,,,,no +irr-pilot-367,hnxbx8k,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-368,hpddhwz,ai_found_drug,1,alcohol,negative,strong,no +irr-pilot-369,hn02qa2,ai_found_drug,1,wellbutrin,positive,moderate,yes +irr-pilot-370,rirnle,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-371,hq9tip6,ai_found_drug,1,melatonin,positive,strong,yes +irr-pilot-372,qpdvjb,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-373,hp2nhjm,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-374,hk7ukfw,ai_found_drug,1,coq10,mixed,strong,yes +irr-pilot-375,hlltr1m,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-376,hjb8ekx,no_ai_drug_random,0,,,,no +irr-pilot-377,hq8llut,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-378,hmov5k9,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-379,houxltk,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-380,r47hhe,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-381,ho5f3ko,ai_found_drug,2,l-theanine|cbd,positive|positive,weak|strong,yes +irr-pilot-382,hjtzkba,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-383,hmgnajq,ai_found_drug,2,immune renew|andrographis,positive|positive,moderate|weak,no +irr-pilot-384,ho4vra7,ai_found_drug,1,dental injections,positive,weak,no +irr-pilot-385,hmfpv9j,no_ai_drug_random,0,,,,no +irr-pilot-386,hjojmub,ai_found_drug,1,h2 anti-histamine,positive,moderate,no +irr-pilot-387,hkt3k1b,ai_found_drug,5,balance one probiotics|just thrive probiotics|h2 blocker|claritin|antihistamine,positive|positive|positive|positive|positive,weak|moderate|strong|strong|strong,yes +irr-pilot-388,hpbsfg2,ai_found_drug,1,supplements,positive,moderate,no +irr-pilot-389,hq8hwr9,ai_found_drug,1,electrolytes,positive,moderate,no +irr-pilot-390,hlcxk7i,ai_found_drug,1,pfizer,negative,weak,yes +irr-pilot-391,hmqibrm,ai_found_drug,1,peptides,positive,strong,no +irr-pilot-392,hn4udmw,ai_found_drug,1,vaccine,positive,strong,no +irr-pilot-393,hqixi7v,ai_found_drug,1,liquid electrolytes,positive,weak,no +irr-pilot-394,hmjr2fh,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-395,hprhi8m,ai_found_drug,3,coconut oil|vitamin k2|vitamin d3,positive|positive|positive,strong|strong|strong,no +irr-pilot-396,hmhj2zx,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-397,hpw5rus,no_ai_drug_random,0,,,,no +irr-pilot-398,ho27uq8,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-399,hl5ew8y,ai_found_drug,3,alvesco|steroid|albuterol,positive|positive|positive,moderate|moderate|weak,yes +irr-pilot-400,hq7gu7i,no_ai_drug_random,0,,,,no +irr-pilot-401,hkow4pa,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-402,hocyifl,ai_found_drug,1,vaccine,negative,strong,no +irr-pilot-403,hp6ctia,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-404,hlfoko5,ai_found_drug,5,rutin|monolaurin|quercetin|supplements|valtrex,negative|positive|positive|negative|negative,strong|weak|weak|moderate|moderate,yes +irr-pilot-405,hl62qco,ai_found_drug,2,snri|ssri,negative|negative,strong|strong,yes +irr-pilot-406,hmqauqr,no_ai_drug_random,0,,,,no +irr-pilot-407,holdnce,ai_found_drug,1,serenagen,positive,strong,no +irr-pilot-408,hpbcpkp,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-409,hk7ui7q,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-410,hn9jh1t,ai_found_drug,1,beta blockers,positive,strong,yes +irr-pilot-411,hoaahvu,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-412,hpba4e7,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-413,hjeckde,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-414,hlci3nz,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-415,hm4ipa5,ai_found_drug,1,cetirizine,positive,strong,yes +irr-pilot-416,hoi4q64,ai_found_drug,1,magnesium,positive,weak,yes +irr-pilot-417,hp0x3a2,ai_found_drug,5,collagen|vitamin d|probiotics|fish oil|magnesium,positive|positive|positive|positive|positive,weak|weak|weak|weak|weak,yes +irr-pilot-418,hkg6sog,ai_found_drug,1,azithromycin,positive,strong,yes +irr-pilot-419,hngadqf,ai_found_drug,4,stinging nettle|moringa|quercetin|cetirizine,positive|positive|positive|negative,weak|weak|weak|moderate,no +irr-pilot-420,hpv27yt,no_ai_drug_random,0,,,,no +irr-pilot-421,hngvcrt,no_ai_drug_random,0,,,,no +irr-pilot-422,r6ndi0,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-423,hksku4t,no_ai_drug_random,0,,,,no +irr-pilot-424,hmz6akb,ai_found_drug,2,vitamins|supplements,positive|positive,weak|weak,yes +irr-pilot-425,hneaqrz,ai_found_drug,1,gaba,positive,strong,yes +irr-pilot-426,hjv7j8m,ai_found_drug,1,pfizer,negative,strong,yes +irr-pilot-427,hlj59e6,no_ai_drug_random,0,,,,no +irr-pilot-428,hmbt5hd,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-429,hncgad4,ai_found_drug,1,flccc regimen,positive,strong,no +irr-pilot-430,hpry0zn,ai_found_drug,1,fluconazole,negative,strong,yes +irr-pilot-431,hmcxx2c,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-432,hka2izf,ai_found_drug,2,dip|cigarettes,negative|mixed,moderate|strong,no +irr-pilot-433,hjivpjn,ai_found_drug,1,aspirin,positive,weak,yes +irr-pilot-434,hmta1ra,ai_found_drug,1,pfizer vaccine,positive,moderate,yes +irr-pilot-435,ho1ejye,no_ai_drug_random,0,,,,no +irr-pilot-436,hmgo2xs,ai_found_drug,1,prednisone,positive,strong,yes +irr-pilot-437,ho234n8,ai_found_drug,1,uppers,positive,strong,yes +irr-pilot-438,hjg907n,ai_found_drug,1,wellbutrin,positive,moderate,yes +irr-pilot-439,hkxby00,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-440,hnhar1a,ai_found_drug,3,naproxen|nsaids|ibuprofen,positive|positive|positive,weak|weak|weak,yes +irr-pilot-441,hpzcjfo,ai_found_drug,1,vitamin d,positive,strong,yes +irr-pilot-442,hqqms0f,ai_found_drug,1,vaccine,negative,strong,no +irr-pilot-443,hlfls1b,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-444,hmcv8y7,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-445,hn9xocy,ai_found_drug,2,bilberry|quercetin,positive|positive,weak|weak,yes +irr-pilot-446,hoojkjo,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-447,hk5fkcd,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-448,hiyc00y,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-449,hkm1pid,ai_found_drug,1,vaccine,negative,strong,no +irr-pilot-450,hj8ytdh,ai_found_drug,1,supplements,positive,weak,no +irr-pilot-451,hqg3ckn,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-452,hp8h88a,ai_found_drug,1,caffeine,negative,strong,yes +irr-pilot-453,hpq85j6,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-454,hlk5vuk,ai_found_drug,1,parasym plus,positive,moderate,yes +irr-pilot-455,hobypwe,ai_found_drug,3,branched chain amino acids|bcaas|gaba,positive|mixed|positive,weak|weak|strong,yes +irr-pilot-456,hpruj0k,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-457,hlbytfd,ai_found_drug,1,lexapro,negative,weak,yes +irr-pilot-458,hjodzdg,ai_found_drug,3,iv|glutathione|vitamin c,negative|negative|negative,strong|moderate|strong,yes +irr-pilot-459,hjbywx8,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-460,r6t42l,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-461,hk5jfzr,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-462,hjclk5i,ai_found_drug,2,flu shot|vaccine,negative|negative,strong|strong,no +irr-pilot-463,hq749zc,ai_found_drug,1,nac,mixed,weak,yes +irr-pilot-464,hnbsyfe,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-465,rq76bi,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-466,hoxxmwe,no_ai_drug_random,0,,,,no +irr-pilot-467,hlut1yb,ai_found_drug,1,flu shot,negative,strong,yes +irr-pilot-468,hq3ujbh,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-469,hjguhs3,ai_found_drug,2,pravastatin|coq10,positive|positive,strong|weak,yes +irr-pilot-470,houqr5z,ai_found_drug,1,150mg a day,mixed,strong,yes +irr-pilot-471,hqhf0b5,ai_found_drug,1,magnesium,positive,moderate,yes +irr-pilot-472,hq0p2g5,ai_found_drug,2,astrazeneca vaccine|pfizer vaccine,positive|positive,weak|weak,no +irr-pilot-473,hn3r2ig,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-474,hp2jduu,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-475,hj2rql3,ai_found_drug,1,vitamin d,positive,strong,yes +irr-pilot-476,hnk3iwf,ai_found_drug,1,supplements,positive,strong,no +irr-pilot-477,hl7dlb6,no_ai_drug_random,0,,,,no +irr-pilot-478,hk2slq6,no_ai_drug_random,0,,,,no +irr-pilot-479,hpk0fkx,ai_found_drug,2,diuretic|magnesium,negative|positive,strong|strong,yes +irr-pilot-480,hqi088w,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-481,hkqj03a,ai_found_drug,2,cetirizine|antihistamine,positive|positive,strong|strong,yes +irr-pilot-482,hog0w9z,no_ai_drug_random,0,,,,no +irr-pilot-483,hjaxgk0,no_ai_drug_random,0,,,,no +irr-pilot-484,ho6ck1j,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-485,hqo84zr,no_ai_drug_random,0,,,,no +irr-pilot-486,hor2beq,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-487,hlp4kos,ai_found_drug,2,meds|supplements,negative|negative,strong|strong,yes +irr-pilot-488,hjngy3y,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-489,hmtbc4s,ai_found_drug,2,h1 blocker|h2 blocker,positive|positive,weak|weak,yes +irr-pilot-490,hq5b19u,no_ai_drug_random,0,,,,no +irr-pilot-491,hkvmj0x,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-492,hlcjmrs,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-493,hoxx51v,ai_found_drug,1,pfizer,negative,strong,yes +irr-pilot-494,hjzqezg,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-495,hpa1h6p,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-496,hnrbnu8,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-497,hpfi08n,no_ai_drug_keyword_match,0,,,,yes +irr-pilot-498,hpurneb,no_ai_drug_random,0,,,,no +irr-pilot-499,hqhzth9,no_ai_drug_random,0,,,,no +irr-pilot-500,ho96tv4,ai_found_drug,1,brivudine,positive,strong,no diff --git a/docs/irr_pilot_500/coder_output_template.csv b/docs/irr_pilot_500/coder_output_template.csv new file mode 100644 index 0000000..3e4e94b --- /dev/null +++ b/docs/irr_pilot_500/coder_output_template.csv @@ -0,0 +1,501 @@ +sample_id,coder_id,drug_mention_verbatim,personal_use,sentiment,signal_strength,confidence,notes +irr-pilot-001,,,,,,, +irr-pilot-002,,,,,,, +irr-pilot-003,,,,,,, +irr-pilot-004,,,,,,, +irr-pilot-005,,,,,,, +irr-pilot-006,,,,,,, +irr-pilot-007,,,,,,, +irr-pilot-008,,,,,,, +irr-pilot-009,,,,,,, +irr-pilot-010,,,,,,, +irr-pilot-011,,,,,,, +irr-pilot-012,,,,,,, +irr-pilot-013,,,,,,, +irr-pilot-014,,,,,,, +irr-pilot-015,,,,,,, +irr-pilot-016,,,,,,, +irr-pilot-017,,,,,,, +irr-pilot-018,,,,,,, +irr-pilot-019,,,,,,, +irr-pilot-020,,,,,,, +irr-pilot-021,,,,,,, +irr-pilot-022,,,,,,, +irr-pilot-023,,,,,,, +irr-pilot-024,,,,,,, +irr-pilot-025,,,,,,, +irr-pilot-026,,,,,,, +irr-pilot-027,,,,,,, +irr-pilot-028,,,,,,, +irr-pilot-029,,,,,,, +irr-pilot-030,,,,,,, +irr-pilot-031,,,,,,, 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+irr-pilot-482,,,,,,, +irr-pilot-483,,,,,,, +irr-pilot-484,,,,,,, +irr-pilot-485,,,,,,, +irr-pilot-486,,,,,,, +irr-pilot-487,,,,,,, +irr-pilot-488,,,,,,, +irr-pilot-489,,,,,,, +irr-pilot-490,,,,,,, +irr-pilot-491,,,,,,, +irr-pilot-492,,,,,,, +irr-pilot-493,,,,,,, +irr-pilot-494,,,,,,, +irr-pilot-495,,,,,,, +irr-pilot-496,,,,,,, +irr-pilot-497,,,,,,, +irr-pilot-498,,,,,,, +irr-pilot-499,,,,,,, +irr-pilot-500,,,,,,, diff --git a/docs/irr_pilot_500/coding_input.csv b/docs/irr_pilot_500/coding_input.csv new file mode 100644 index 0000000..54f4891 --- /dev/null +++ b/docs/irr_pilot_500/coding_input.csv @@ -0,0 +1,1101 @@ +sample_id,subreddit,post_date,unit_type,title,parent_context,post_text +irr-pilot-001,covidlonghaulers,2021-11-28,comment,,,"Pretty new to Reddit, I tried looking at ur profile but there was a bunch of stuff lol. I guess my question is was light headedness/vertigo feeling one of ur symptoms?" +irr-pilot-002,covidlonghaulers,2021-12-06,comment,,,"They've got a Slack group, which has been a HUGE help to me. I recommend that anyone with long covid join it." +irr-pilot-003,covidlonghaulers,2021-12-18,comment,,,"Beep. Boop. I'm a robot. +Here's a copy of + +###[Candida]( https://snewd.com/ebooks/candida/) + +Was I a good bot? | [info](https://www.reddit.com/user/Reddit-Book-Bot/) | [More Books](https://old.reddit.com/user/Reddit-Book-Bot/comments/i15x1d/full_list_of_books_and_commands/)" +irr-pilot-004,covidlonghaulers,2021-11-16,comment,,,Glad to hear that. I’ve been on statins 5mg for about two weeks and feel a little bit more energy. They are apparently a powerhouse anti inflammatory. I just started adding baby aspirin as well so we’ll see how that goes. I’m also taking Ivermctin twice a week but not sure if it’s really helping. +irr-pilot-005,covidlonghaulers,2021-12-10,comment,,,I got covid about 5 months ago and was really confused so i didnt get checked for that but Maybe I did. I Didn't know that was a symptom just looked it up.I had to get fluids and IV potassium like 6 or 7 times because my levels were low and I was weak and faint and had went to the hospital. My potassium kept dropping the first two months but i dont feel like i have that problem as much now. I drank a bunch of coconut water and ate a bunch of potatoes and bananas every day. I also took alpha lipoic acid and i think that helped with the shakyness somehow. I do still feel a bit shaky at times still but the cymbalta has for sure helped I feel. Anyways best of luck to you! +irr-pilot-006,covidlonghaulers,2021-11-01,comment,,,">With time I figured out it was autoantibidies + glutamate excitotoxicity. + +That makes a lot of sense; I started taking glutamine to help my gut barrier and it was nice at first, but after a couple of days it started to make me super anxious and ""brain foggy"", presumably as the glutamine was turned into glutamate in my brain. Probably made worse by the fact I'm on ritalin, which apparently increases glutamate transmission to NMDA receptors." +irr-pilot-007,covidlonghaulers,2021-11-23,post,Booster shot?,,"Has anyone here had their 3rd dose? What was your experience like? + + +I'm double vaxxed with Moderna and have had long covid since January. I'm a lot better now but still not recovered" +irr-pilot-008,covidlonghaulers,2021-12-01,comment,,,"It could be vitamins deficiency. I didnt think of that. I know that i was heavily taking supplements AFTER I got sick and i didnt have any bad symptoms. Until i stopped taking them. Then my hair falls out, i get ultra mental issues and i feel ny chest was gonna implode." +irr-pilot-009,covidlonghaulers,2021-11-07,comment,,,"The negativity is because it Does Not Work for COVID. It's a drug for worms. There have been several studies, plus one pretty thorough meta-analysis - and the ONLY time Ivermectin has done anything against COVID is in petrie dishes at doses high enough to kill a human. Otherwise, it's no more effective than taking a peppermint, but with higher risks. + +It's become political because a certain segment of society has decided they prefer to believe politicians over scientists." +irr-pilot-010,covidlonghaulers,2021-11-12,comment,,,"Because insurance won’t cover it and the doctor can have his/her actions questioned if they are ordering advanced testing without cause. Cause being an abnormality in earlier testing. It sucks, but that’s the system we are all fighting right now. I used to work in it and now I’m fighting the same uphill battle as you." +irr-pilot-011,covidlonghaulers,2021-11-02,comment,,,"Yes, had bloodwork done a few times since this started. Everything normal except for the blood glucose in the beggining. I was 197 in april and now 175. i’m 28 male" +irr-pilot-012,covidlonghaulers,2021-11-17,comment,,,"Hi, I’ve had this since the beginning of my long haul as well and I’m sorry you’re going thru it, I know how much it sucks. I still can’t manage to sleep through the whole night without waking up but I am able to fall asleep without the jolts every night with L-Theanine magnesium glycinate, melatonin and taurine. If I don’t take these to calm down my nervous system I definitely will get the jolts that keep me up for hours. Hope this helps!" +irr-pilot-013,covidlonghaulers,2021-12-31,post,Reinfection 3 days after quarantine? Am I still contagious?,,"I had omicron (tested positive on a PCR). I am double vaccinated. I quarantined for 10 days. I had symptoms (runny nose, coughing up mucus, sneezing, coughing, sore throat, hoarse voice) on days 3-5 then felt totally better. After day 10 I felt totally fine and returned to seeing people. + +Now on days 13 and 14 I have my same symptoms again (congestion, cough, sore throat, hoarse voice). Am I still contagious? Did I reinfect myself this soon? Is that even possible?" +irr-pilot-014,covidlonghaulers,2021-12-09,post,What is going on with me? *neuro crap*,,"Ugh just when I thought I was getting better I get more set backs. What is going on with me? The sweating problem is back, the air hunger or tight throat hasn’t gone away yet, and I’ve been feeling random pressures/feelings all over my body. I also went to physical therapy yesterday to strengthen my muscles, but after a test they think my muscles are fine but my arms still feel like a noodle when I hold something. + +Jesus Christ has this happened to anyone? Does this shit get better?" +irr-pilot-015,covidlonghaulers,2021-12-24,comment,,,"Also very interesting to hear your take! Interesting for me, antihistamines didn’t do anything! I don’t have any mcas or sensitivities, and fatigue wasn’t a main part of my symptom cluster. By looking at my neutrophils, and the big decline, we decided to peruse some anti-microbial treatments. + +The reason I started Buhner was because I tested positive on IgG for western blot for Lyme, on some Lyme specific bands. My doctor suggested starting Buhner as there’s really nothing to lose and are well tolerated. + +Nicotine helped with my visual system and helps to clear out a bunch of my cognitive problems. I do limit myself to 2x per day. + +I hope that they do some extensive immune system studies because it sounds like there are many different modalities which correlate to different symptoms." +irr-pilot-016,covidlonghaulers,2021-12-16,comment,,,"No, statin is a prescription. Oh I totally relate! I wish by now there was so much more data about what's going on with early long haulers so that you could get better so much faster." +irr-pilot-017,covidlonghaulers,2021-12-19,comment,,,Search the sub for microclotting/microclots and you'll find relevant links. Some of us are seeing improvement taking natto/serra (enzymes that break down microclotting). +irr-pilot-018,covidlonghaulers,2021-12-30,comment,,,">got a round of antibiotics prescribed which is working fast + +Did he test positive for covid? Why were antibiotics prescribed for a viral infection?" +irr-pilot-019,covidlonghaulers,2021-12-10,comment,,,"Most my family doesn’t really believe the vax injury. But the closest people do, so thats what’s important. Im still early in seeking medical care, good thing is my neurologist didn’t outright dismiss the vax being a cause. As for covid im starting to make Drs apps for my heart and lungs so we’ll see what happens with that. I think my PCP thinks im exaggerating my symptoms because i went to the ER twice because of covid." +irr-pilot-020,covidlonghaulers,2021-12-05,comment,,,"Same. + +19M + +Covid in august 2020. Brain fog was slowly increasing. Speech problems came on 5th month, now 15+ months in longhaul and can't think properly and its not going to stop (I feel worse and worse), claritin, Acetyl L-carnitine, Omega-3 don't help" +irr-pilot-021,covidlonghaulers,2021-11-26,comment,,,I got the booster because I work at a school with kids who aren’t vaccinated and I‘ve already been exposed multiple times this year. I am a long hauler and I don’t want to get it again and make my long haul worse. But I had no reaction to my first dose of the vaccine and my long haul symptoms went away for a couple months after the second dose of the vaccine (they came back) so it was a pretty easy decision to get the booster since my experience with the first two doses was positive. +irr-pilot-022,covidlonghaulers,2021-11-14,comment,,,"Against a new virus it has not encountered before? In a way, yes. + +It took thousands of years for what we now know as the common cold to become what it is. Once upon a time it also killed and maimed tons of people. Evolution does not happen overnight. It takes generations. We are not the humans evolved to live with covid, those haven’t been born yet. It’s why we have vaccines for flu, measles, smallpox,… also. + +The fact that you are not one of the people adapted to live with covid should be evident by your long covid. We - along with the people who died - are the ones nature would select out if it wasn’t for medicine and vaccines." +irr-pilot-023,covidlonghaulers,2021-12-10,comment,,,"I’m on it for 6+ months and it hasn’t helped much overall. May be it does with the anxiety but overall no noticeable change in the long run. I have added mirtazapine and abilify few days ago, hopefully they will help at least for the neuro stuff." +irr-pilot-024,covidlonghaulers,2021-12-17,comment,,,"My LH symptoms got significantly worse after a round of antibiotics. So researching more, I was almost convinced that I had candidiasis and this was causing my issues. I also had oral thrush (Nystatin took care of that in about a week). But, before taking the Nystatin, I did a candida blood test and comprehensive GI map stool test that included checking for candida, and those both were totally normal. So, I’m not sure if the tests aren’t that accurate, or if my initial thought of having candida overgrowth was incorrect." +irr-pilot-025,covidlonghaulers,2021-12-02,comment,,,"Walking, yoga, and recently…cycling. I keep pushing myself even though I feel like crap because my weight has been so out of control since COVID. It’s the only thing keeping me from weighing 250lbs." +irr-pilot-026,covidlonghaulers,2021-11-22,comment,,,"It is a yearly MRI scan to monitor my root and ascending aortic aneurysms to see if I need to undergo open heart surgery + +The aneurysms were initially discovered after a chest CT scan for chest pain in the ER, March 2020. I tested positive for covid-19 before and during the hospital visit. + +I got quick and long term side effects from the CT contrast dye, so I opted for the chest MRI" +irr-pilot-027,covidlonghaulers,2021-11-26,comment,,,"The vaccine mostly cured me from COVID long-haul. My long-haul daughter is showing improvement after the pediatric vaccine, also." +irr-pilot-028,covidlonghaulers,2021-11-13,comment,,,"Yeah many have this :) it should resolve in 6 months. Some have it for 1,5 year and then it has resolved. Don't push yourself and try not to worry too much. + +I've had this since July 2021 and my heart has been examined and it's healthy. It's caused by something else than the heart itself and it's harmless according to all the doctors I've seen." +irr-pilot-029,covidlonghaulers,2021-11-15,comment,,,"Yeah tried electrolyte drinks… hasn’t helped. I’ve had so many blood tests this past year I think one of the veins in my arm’s stopped working :) All blood tests have been totally normal (iron, CRP, thyroid, full blood count, autoimmunity-related tests, etc.)" +irr-pilot-030,covidlonghaulers,2021-12-30,post,Omicron for unvaccinated,,"Any unvaccinated people get omicron if so how mild or severe are the symptoms and how long did they last you + +Is getting Covid a second time usually lighter or does it hit harder" +irr-pilot-031,covidlonghaulers,2021-11-03,comment,,,"I'm quite out of my depth here but elevated VWF can be associated with thrombosis. Vitamin K promotes clotting factors (mostly a good thing) so maybe supplementation of this vitamin isn't the best in this scenario? + +Vitamin E, Cinnamon, Ginger, Ginko Biloba, Bromelain are linked to lowering platelets or clotting factors. These are complex processes though and targeting the wrong enzyme could have unexpected results. I'm also unclear how this is linked to the anti h1 histamines you've been prescribed. I'd love to know more about this." +irr-pilot-032,covidlonghaulers,2021-12-13,comment,,,"These antivirals don't target covid, they're meant for herpes viruses which is a totally different family that stay with us after first infection in the form of latent cells. Read about viral latency and herpes viruses" +irr-pilot-033,covidlonghaulers,2021-12-26,comment,,,"Niacinamide is better for people with histamine intolerance, according to this book + +https://www.histamine-sensitivity.com/books/beginners-guide-05-17.html" +irr-pilot-034,covidlonghaulers,2021-11-19,post,Anyone Know how do deal with Joint pain?,,"One if the most disabling symptoms is my full body joint pain. Knees, angles, toes, wrists, arms, shoulders, chest, they all have sever pain and get stiff and rub really bad, and often pop really loudly. Wondering if this is common and if anyone knows hot to deal with the pain outside of popping ibuprofen like tik tacs. Only time I've ever felt ok was on narcos for wisdom tooth extraction." +irr-pilot-035,covidlonghaulers,2021-12-08,comment,,,"I have been taking then together (assuming zytek is fexofenadine?) and they've helped my brain fog. +My ENT doctor actually showed me an article in the British medical journal and I've got the dosages slightly wrong so just adjusted." +irr-pilot-036,covidlonghaulers,2021-11-02,comment,,,"Sorry. myself as well. Been trying so hard. Already lost my job. friends and family are finally coming around again. Gonna lose the house and car next. Or I starve. Better sell all the stupid fucking tools I can't even use anymore. My legs are suffering from venous insufficiency or some kind of vascular dysfunction. I've developed serious Raynaud's. My foot get so cold it almost fucking fell off. In my house at room temperature! +I'm getting an arterial doppler ultrasound this month when the specialist is in town. Only hope I've got. +I bounced around quite a number of walk-in clinics, teledocs, and hospitals, until I finally lucked out and got good advice. +Try a health guidance hotline." +irr-pilot-037,covidlonghaulers,2021-12-07,comment,,,"My first vaccine was temporary help from brain fog depression. + +Second vaccine gave me increased fatigue. + +If I had a crystal ball I woulda skipped the second one.. but.. that's me." +irr-pilot-038,covidlonghaulers,2021-12-11,comment,,,"I had horrible tinnitus and noise sensitivity post 1st dose as well in addition to rashes, skin burning, sensitivity, etc. I'll never know if it would've gone away because I went into covid a week later. It was baaaaad." +irr-pilot-039,covidlonghaulers,2021-12-12,comment,,,"> now it seems like my bone density is shrinking especially in my skull. + +Sorry, can you clarify this?" +irr-pilot-040,covidlonghaulers,2021-11-24,comment,,,"I'm further north in BC and having trouble getting ANY doctor to listen. Allergist wait (in the early days I was told it's just allergies) was 9 months. Cardiologist - 3 month wait. Now I'm in line for a rheumatologist - 6 month wait. + +Have you tried any of these online doctor appointments? Naturopaths?" +irr-pilot-041,covidlonghaulers,2021-12-26,comment,,,I've been close to recovery for the past two months but I keep having horrible relapses. If I totally recover I will tell everyone so that they have some hope. +irr-pilot-042,covidlonghaulers,2021-12-21,comment,,,"To answer ur Q don’t know. In hindsight it took away the dizziness but it elevated my already post COvid high blood pressure - which may not be the best for people with BP issues or clotting or general vascular concerns - read as LHRs +So That’s a doctor question." +irr-pilot-043,covidlonghaulers,2021-12-11,comment,,,Adderall and B12 seem to work best for me. I haven't tried lions mane or ginkgo mentioned above. I will try those. +irr-pilot-044,covidlonghaulers,2021-12-03,comment,,,"Cymbalta made my symptoms worse, especially my heart rate. My HR was incredibly high while sitting out laying down" +irr-pilot-045,covidlonghaulers,2021-12-06,comment,,,"Do you have pots? Other things like excessive water and salt may help you. +That said I have taken metoprolol and atenolol currently. No side effects from atenolol that I can accurately decipher amongst long haul symptoms. Metroprolol made my insomnia worse" +irr-pilot-046,covidlonghaulers,2021-11-17,comment,,,"I think what CW2050 might be trying to say is that the damage we're seeing to our brains/nervous system is more linked to the protien spike on the outside of the COVID virus rather than the virus body. The vaccine sends messenger rna to your cells and takes over protien production. Our own cells then grow the protien spikes, which is why some people are developing LH from only the vaccine." +irr-pilot-047,covidlonghaulers,2021-12-17,comment,,,"I’ve actually taken SSRIs before, and came off them with no issue. My long covid symptoms started after I had covid, when I wasn’t taking SSRIs. Plus my long covid symptoms don’t mimic seratonin withdrawal symptoms anyway" +irr-pilot-048,covidlonghaulers,2021-11-08,post,Black seed oil,,"Has anyone tried it? I’ve been on it for almost a week now and it’s helped me immensely. I saw a video where a vaccine long hauler said it helped them. I’m assuming it’s because of its anticoagulant and anti inflammatory properties. It’s the first supplement that has actually made me feel different. The only other things that have taken the edge off for me have been Zyrtec and Pepcid. Here’s the kind I bought: + +Limited-time deal: ZHOU Black Seed Oil | 100% Virgin, Cold Pressed Source of Omega 3 6 9 | Super antioxidant for Immune Support, Joints, Digestion, Hair & Skin | 60 Caps https://www.amazon.com/dp/B0779JC57M/ref=cm_sw_r_cp_api_glt_fabc_dl_RFQX0Z41FZSXAR3FAFGX?_encoding=UTF8&psc=1" +irr-pilot-049,covidlonghaulers,2021-11-14,comment,,,"Hi there. 30m. I have never had anxiety/depression. My mind/brain was/is broken since April. Started taking Zoloft (horrible experience) in early June. Prozac a couple weeks later which i've been on for 5 months. + +It's all a crapshoot. Some people respond to SSRI's some don't. One might be great for someone and bad for another person" +irr-pilot-050,covidlonghaulers,2021-12-06,comment,,,So the main healer for me came in starting low intensity exercise. I started going for walks daily out in the sun and the. When I could going for jogs. At first I couldnt eat animal protein as it would make me really nauseous but eventually i started eating chicken without a problem. I end every workout with a cold cold shower. No more fatigue no more brain fog. +irr-pilot-051,covidlonghaulers,2021-12-26,comment,,,"I just responded in this thread but please see my comment about magnesium! This helped me a TON with heart palpitations. I was plagued with them for 3 years thanks to a medicine I was taking (diuretic) and covid made it worse. It took a few weeks of supplementing and supplementing by itself. Not with Vitamin D, Calcium or any other vitamin. But there's a lot of evidence of depleted magnesium post infection due to increased physical and mental stress since adrenals use up magnesium to balance catecholamines." +irr-pilot-052,covidlonghaulers,2021-12-20,comment,,,"Antihistamines have helped me here. Not the ideal solution, because even the ""non drowsy"" ones aren't non drowsy, but it works for me." +irr-pilot-053,covidlonghaulers,2021-12-13,comment,,,"The neurological effects of covid are still poorly understood, even compared to the other aspects of long covid. The good news is that brain has much greater ability to heal itself than was assumed a few decades ago. I made a point of doing a lot of puzzles and mental challenges when I first got sick to stay sharp. + +Regardless of neurological issues, acute and long covid can both be very traumatic. The first few days I thought I might die and it took me awhile to process that experience. Get a good therapist you can talk to about what you experienced." +irr-pilot-054,covidlonghaulers,2021-11-07,comment,,,I have already been at the doctor and apparantly already checked out everything and everything was fine. Still a pain in the ass though. +irr-pilot-055,covidlonghaulers,2021-12-18,comment,,,I have noticed some tick like twitches when I look a certain way. At the end of my head turn I’ll tick two or three times. Very strange because this has just started after 4 months of LH and wondered if it was a symptom. Thanks for sharing thought it was just me :/ +irr-pilot-056,covidlonghaulers,2021-11-05,comment,,,"Am [taking this brand.](https://www.amazon.com/Doctors-Best-Natto-Serra-Non-GMO-Gluten/dp/B00DBEVTDE) Realized after purchase it's annoyingly vague on how much you're getting. + +If it works I'll play around with the 2 compounds and dial in what I need." +irr-pilot-057,covidlonghaulers,2021-12-17,comment,,,"Specifically to thin the blood, I’m taking each of the below daily; +Vitamin E, +Grape Seed Extract, +Nattokinase, +Serrepeptasa, +Lumbrokinase, +Ginkgo biloba, + +I also take a small aspirin once a week." +irr-pilot-058,covidlonghaulers,2021-12-26,comment,,,"14 days pretty tough, breathing problems and went to the ER twice. Then got better for a few days and started working and then it hit me again for another week." +irr-pilot-059,covidlonghaulers,2021-11-06,comment,,,"Sorry to hear that. Pfizer was a turning point for me for the better however it wasn't the only thing, I feel it was a combination of things that helped me heal in addition to the vaccine and maybe it wouldn't have worked without the other things." +irr-pilot-060,covidlonghaulers,2021-11-13,comment,,,Yup keep yourself hydrated and eat a lot of fiber. Aloe Vera juice or apple cider can help to hydrate. Coconut water has proven to be game changer for me. Although if I eat something too spicy I feel dehydrated. It depends on how much roughage you’re eating. So yeah go green greens and drink more water. Stay strong it will pass. I am no longer facing this issue. So I would say stay patient and see it disappear. +irr-pilot-061,covidlonghaulers,2021-12-26,comment,,,I developed pretty severe PoTs at 12 months... I think I love had mild symptoms all along in some form! But at least I can put a label to it and get some meds +irr-pilot-062,covidlonghaulers,2021-11-29,comment,,,"It’s rescue but when you’re bad, 3 times a day is fine, whatever you need as long as it’s not like every couple hours. I’ve brought my neb to work, but I have an office but I can only work remotely right now but my office is full remote. I’m so so sorry. Make sure to bring albuterol for after the test, I thought I wouldn’t be able to do it but did. Nebulizers always work better for me than the inhaler because they really get deep into the airways." +irr-pilot-063,covidlonghaulers,2021-12-01,comment,,,"Worst fatigue for me has been characterized by extreme muscle weakness, physical and mental exhaustion, and brain fog. The days when it's the worst, I can barely make it out of bed for a day or two and can only manage to sleep, go to the bathroom, and eat/drink. It affects my ability to perform daily tasks including self-care. There are days where I'll wake up with that type of fatigue and it will slowly dissipate throughout the day, allowing me to perform those daily tasks later in the evening." +irr-pilot-064,covidlonghaulers,2021-12-22,comment,,,And here we had the CDC recommending the vaccines as soon as you were out of quarantine after infection. Wouldn't be surprised if they are still recommending that +irr-pilot-065,covidlonghaulers,2021-11-09,comment,,,Thank you for sharing! Has anything helped at all? Have you tried checking potassium as the others have suggested? +irr-pilot-066,covidlonghaulers,2021-11-25,post,Long-term ibuprofen withdrawal symptoms?,,"I’ve been taking between 200-400mg of ibuprofen daily for at least 3 months (might be closer to 6, but time is hard to track this year). I want to stop taking it entirely because I’m going to be starting Prozac soon, but the last few days have been very odd - much more dizziness and poor coordination than usual. + +Could this be an effect of quitting the ibuprofen or is it more likely that I’m just having yet another random relapse and the timing is coincidental? Has anyone else taken ibuprofen daily for months at a time and experienced any difficulties getting off it?" +irr-pilot-067,covidlonghaulers,2021-12-15,comment,,,"I feel this is a difficult thing to answer. The reason being is time seems to be a healer for most of not all of us. So? It could have been the vaccine help push things along or just time. + +For me personally, I didn’t feel any worse after both doses of pfizer. But I don’t know for sure it helped." +irr-pilot-068,covidlonghaulers,2021-11-03,comment,,,"Yes I got both and haven’t felt right since getting the 2nd shot of Pfizer, feels like the symptoms I had beofre are now back or were just hiding for when I stated work again which I just started last Monday. I feel terrible some days at work. I truly believe I have CFS with PEM only thing is I’m never tired I just feel like I have constant flu symptoms except for fever." +irr-pilot-069,covidlonghaulers,2021-11-23,comment,,,"I’m a musician of over 8 years, I produce and do freelance work for people. + +My own music used to be the only thing that drives me on a daily basis - I’d kill to get my ideas finished and out into the public. I really believed in myself for all those years. However, when my brain symptoms first started, literally nothing I did gave me pleasure for weeks on end, music especially. + +I’m 3 months in now and I have ups and downs, I force myself to work on music during my ups, and it’s definitely difficult, but possible. This has all been a huge creative set back for me." +irr-pilot-070,covidlonghaulers,2021-12-27,comment,,,"I’m still scared to exercise. Seeing as walking around the house or doing basic cleaning gets my heart going to 120s, 130s. Walks I can do. I miss riding my peloton so much. I’m taking baby steps though. 👌🏽" +irr-pilot-071,covidlonghaulers,2021-12-21,comment,,,"Agree with this approach but also please try NAC and glutathione, vitamin d3 ((high dose) k2, coq10 quercetin, there’s a few more that you could add to your stack abs it is almost a full time job managing which! E.g magnesium zinc, bp0007" +irr-pilot-072,covidlonghaulers,2021-12-15,comment,,,">20-40 a day is nothing. + +This. Before my heart ablation procedure in October, I was averaging more than 10K/day, which is the threshold for the ""very frequent"" classification. Doctor did the procedure because I was having obvious quality of life issues, not so much because my heart was at risk of immediate damage. + +Your heart beats about 100,000 times a day." +irr-pilot-073,covidlonghaulers,2021-12-07,post,Turning red?,,"Anyone else just turning red at times? Like I’ve always had almost translucent skin but this is sort of frightening. Basically every part of my body will swell and turn red. My feet are the worst sometimes my toes will be a maroon color, almost as if the blood is oxidizing. Anyone else struggle with this? Can it be dangerous?" +irr-pilot-074,covidlonghaulers,2021-12-08,comment,,,Thanks for the info. Very helpful. Yes I’ve been tossed around to so many specialists who will treat the symptoms but nothing has worked. I’ll try looking for another neurologist. I found one but he just gave me a SSRI and an alpha blocker without any tests. He said “you look fit and healthy. And your blood work is great. I think we should treat what is going on in your mind rather than your body.” I’m a terrible candidate for SSRI based on my genes (although I ended up second guessing myself and said F it and tried it for a few weeks and it made everything exponentially worse). Guess we gotta keep fighting. +irr-pilot-075,covidlonghaulers,2021-12-06,comment,,,"My vaccine reaction (I had heart issues) is quite similar to symptoms described in LC, so I can’t say that I personally feel thrilled to be vaccinated but I still think that for most people, it’s their best shot, and I am not anti-vax despite being injured." +irr-pilot-076,covidlonghaulers,2021-12-05,comment,,,"Dude, do NOT stop ssris cold turkey. Its really bad for you. If your going to stop taking them you need to tapper off. Have your talked with your doc about this?" +irr-pilot-077,covidlonghaulers,2021-12-07,comment,,,"Great that you are already loooking in those options. + +Actually it does not make sense for me, as far as I know, you test for specific mycotoxins in urine. And then depending on what you have, doc has to use appropriately use binders because they can make things even more if used inproperly. + +I am just going to do mold tests and tick borne illnesses test in near future. + +I started seeing functional doc." +irr-pilot-078,covidlonghaulers,2021-11-26,comment,,,"It relieved body aches, stabilized digestive issues, eased brain fog and even lowered blood pressure. Chronic inflammation can be a real bitch." +irr-pilot-079,covidlonghaulers,2021-11-30,comment,,,"I got extremely paranoid, couldn’t sleep, and my anxiety shot through the roof. I take damiana and blue vervain for my nerves and pain now and I actually feel a lot better. But I can def tell when it’s wearing off. I take valerian root with these herbs at night for about 6-7 hours of peaceful sleep." +irr-pilot-080,covidlonghaulers,2021-12-02,comment,,,"Eh not really. The only thing that really improved my symptoms was time and medication. Maybe fermented foods and probiotics also helped, but YMMV." +irr-pilot-081,covidlonghaulers,2021-12-26,comment,,,"It looks like the perfect systemic ""virus"". + +There is certainly a solution. It just won't be found in the traditional pathway." +irr-pilot-082,covidlonghaulers,2021-12-29,comment,,,"If the antibody ends up being the culprit of long haul we will just prolong a cure by excessive censorship. There are other options now like paxlovid. We need to consider all scenarios without a biased nature. + +If we are seeing some who are further injured by vaccination, and monoclonal antibodies, it's not ridiculous to insinuate that the antibody could be at the heart of our issues." +irr-pilot-083,covidlonghaulers,2021-12-25,comment,,,"Does this apply to things like POTS, ME/CFS, post viral fatigue? That’s what many of us have including myself. + +Thanks for taking the time to explain your theory. It’s nice to feel a little more understood but the reality is my life is basically over at 23 before I even got a chance to live. It doesn’t seem like there will ever be a solution to this and I just keep getting worse. It’s sad to read that this virus has done permanent damage to my body" +irr-pilot-084,covidlonghaulers,2021-11-27,comment,,,"I have pretty much the same symptoms. Apart from the vertigo, ear fullness and weird head sensations, which started in July 2020, they all started in April 2021 right after the vaccine. + +In August 2020 I also had auditory hallucinations. + +My worst symptoms now are muscle pain, numbness/tingling, twitches, tremor, head sensations, light and sound sensitivity, derealization and disorientation. + +In April and May 2021 I also had a lot of anxiety and panic attacks; those have improved. The muscular stuff is still there, but the pain has changed - it's less sharp / electric, and more like regular muscle pain, but it's pretty much constant." +irr-pilot-085,covidlonghaulers,2021-12-24,comment,,,I had this feeling.. right when you are about to fall asleep you start gasping for air.. It’s the worst feeling I’ve ever had. The hospital wouldn’t do shit and though I was exaggerating or something.. maybe they just didn’t know what to do as this was back in march 2020.. horrible symptom.. lasted weeks. Metoprolol helped my cardiac stuff try to see if you can get some of that.. this symptom will resolve I think It may be from inflammation of brain but never got a good answer. +irr-pilot-086,covidlonghaulers,2021-12-27,comment,,,"Ill tell you what im currently experiencing. Im 5 months in. First symptom was elevated hr. 140s-150s. One 160s with mild uphill. Breathless etc. some lightheadedness . I took beta blockers 3 months. Im now off of them. Am i better, yes! Do i still have bad days or times of day, yes! Yesterday heart was quite high, erratic mostly on couch with some walking later in the day. Am i feeling good right now? Yes! I use to only feel bad. Like 99% of any given time. Now i have much better days but the bad ones are nearby. Im hopeful for continuing recovery" +irr-pilot-087,covidlonghaulers,2021-11-19,comment,,,I started natto and serra on Monday. I’m probably putting too much hope in this but it sounds so promising what else can I do. Did it get worse before it got better for you? I’ve had a terrible week with symptoms but it could easily be something else that triggered this. +irr-pilot-088,covidlonghaulers,2021-11-05,comment,,,"Yup, then some days I wake up and have the tiniest bit energy and forget for a moment I'm fucked, then suddenly you have that moment where your body just runs out of energy, the legs get heavy, brain foggy and the mood drops as realisation sets in." +irr-pilot-089,covidlonghaulers,2021-11-29,comment,,,it's so weird i've never had this feeling before- 3 months out. And the first time i drink electrolytes (powerade zero) not even less then 30 min after i get this feeling and it's been here for the past 24hrs +irr-pilot-090,covidlonghaulers,2021-12-23,comment,,,"I've read that the typical infectious period is most commonly 2 days before symptoms begin through to 6 days after. Some people can be longer/shorter, obviously. There's also an incubation period from catching the virus to showing symptoms which is about four to five days on average. So again, based on what you say it is possible but only you will know if it's probable. I hope she feels better soon and make sure you don't beat yourself up about it. You acted responsibly in taking the test." +irr-pilot-091,covidlonghaulers,2021-11-28,comment,,,"I can definitely relate to your post. The yellow stools is still an issue for me almost six months in! I suspected it may be due to fat malabsorption, which again points to possible issue with gall bladder/digestive enzymes. 80% of my acute covid were GI symptoms and had GI bleeding for weeks. It hell was scary! I briefly tried pepcid and omeprazole but didn't take them long enough to see results. I did upper endoscopy but it was unremarkable. Did yellow stools resolve for you?" +irr-pilot-092,covidlonghaulers,2021-11-10,comment,,,"Same boat. Five months post covid and two months post vaccine and lightheadedness is persistent. + +Does any of these apply to you? + +- Low iron/ferritin? +- low vitamin D? +- low BP (hypotension)? +- Diagnosed with pots? +- low cortisol? +- have gastritis, colitis, crohn's, celiac or other gut ailments? +- got covid vaccination in recent months? +- low blood sugar (hypoglycemia)? +- on any medications? +- diagnosed with any blood clots? +- have any autoimmune diseases?" +irr-pilot-093,covidlonghaulers,2021-11-30,comment,,,"Also March of 2020 and most of my long-haul symptoms went away following 2nd Pfizer shot in April of 2021. But, it did affect my lungs big time. I still haven't lost the steroid wgt gain. Glad you're better!" +irr-pilot-094,covidlonghaulers,2021-11-04,comment,,,"I have a history of hoshimotos (well controlled, wasn’t an issue day to day), and went hyperthyroid for the very first time in my life at the beginning of my symptoms 3 months ago." +irr-pilot-095,covidlonghaulers,2021-11-05,comment,,,"If in tablet form, you can cut 100mg s in quarters. I personally didn't really flush below 25mg first time either. Nowdays I'm fed up with cuting and just bite half of a tablet for 50mg. For empty stomac you will get a flush faster and at lower doses. +I used flushing version (immediate release simple [niacin](https://en.m.wikipedia.org/wiki/Niacin) ) I don't think brand really matters. + The best is to ask a doc if this is really the right one to get for you and do your research. Higher doses of niacin may have side effects." +irr-pilot-096,covidlonghaulers,2021-12-20,comment,,,My last 2 symptoms of long Covid are both neurological- I have dry eyes and some visual snow issues. I also have bad temperature dysregulation where I go from hot to cold during the day. When I get hot I often get a bit sweaty. Both of these have to do with brain nervous system. So the virus must be breaking through the blood brain barrier. I’m trying to do my own research to discover the cause and find treatment. The eyes can be effected by the vagul nerve. +irr-pilot-097,covidlonghaulers,2021-12-17,comment,,,"I'm personally not getting the booster. I had covid 12 months ago, 1st dose of Moderna 7 months ago, 2nd dose of Moderna 5 months ago. Just had my spike antibodies checked and they are still above 2,500 u/ml. I think at this stage, there's no convincing argument for me to take the booster." +irr-pilot-098,covidlonghaulers,2021-11-14,comment,,,I’ve put on 2 stone since I’ve been long hauling. I lost weight in the acute infection but I am now the heaviest I have ever been. Probably due to the inactivity. I’ve also heard that beta blockers can cause weight gain (not sure if this is true though). I’m getting quite concerned about my weight tbh. It’s hard because I can’t exercise. I really don’t want to take more medication but if I put on any more weight I might have to. I did a bit of research & here in the UK you can get something called Orlistat prescribed from the GP. Sorry I don’t know if you’re in the UK. It works by decreasing the amount of fat absorbed into your body from the food you eat +irr-pilot-099,covidlonghaulers,2021-12-07,comment,,,"I had this for about 6 months after. Then it went away for about 6 months. It started to slowly creep back in 3 months after that. Now, 3 months passed that, my forearm and right calf are killing me. It gets even worse when I’m holding my son for a short period of time. Various other areas hurt off and on. Not a day passes that something doesn’t hurt." +irr-pilot-100,covidlonghaulers,2021-11-16,comment,,,"https://youtu.be/rEJDjfj7oi8 worth a watch. I also had high d-dimer and continue to have breathing difficulty @20 month, but started taking enzymes natto/serra/lumbrokinase to break down the microclotting and that has helped quite a bit so far." +irr-pilot-101,covidlonghaulers,2021-12-07,comment,,,"I'm struggling with similar from the moderna booster, I'm also a covid long hauler but didnt have heart issues with the lh. My personal strategy is going to be deep breathing and mediation/yoga every night to try to calm down the central nervous system as much as possible. it feels like my immune system and nervous system are in overdrive. I just started this last night and I feel slightly better today but too soon to know if this will make a big difference. It certainly cant hurt. Also, yoga is good for inflammation as well." +irr-pilot-102,covidlonghaulers,2021-12-03,comment,,,Are you still on it? How did you get the autoimmune arthritis dx? When did it start working for you? +irr-pilot-103,covidlonghaulers,2021-12-31,comment,,,"If I had the chance to do it again I wouldn't mate! Feel rougher than a badgers arse hole. + +Take this with a grain of salt as I have no sources but a friend told me tonight that they're planning on doing a trial with LC patients... Gonna give em a vaccine PER MONTH which just feels like throwing shite at the wall and seeing what sticks. + +Cheers for that, will give him a watch tomorrow." +irr-pilot-104,covidlonghaulers,2021-11-03,comment,,,"Oh damn sorry you’re right is flouvo. + +2 months should be enough time to have settled in your system right? Follow up with the doctor and up your dosage maybe? + +SSRIs need a lot of tweaking before you get the right spot for you. I’m on Lexapro myself." +irr-pilot-105,covidlonghaulers,2021-12-03,post,Who here suffers from an eating disorder on top of all this?,,"If so, did you have your eating disorder before you got sick, or did you start having it during or because you got sick? + +How has it effected your recovery or the other way around? + +I have an ED called ARFID (avoidant restrictive food intake disorder), and I had just ""graduated"" from an eating disorder clinic, finally getting to a healthy weight when suddenly I got covid. Fair to say I relapsed immediately because I couldn't eat much of anything while I was sick... I haven't recovered started eating normal again, and tbh I feel like long covid and my ED makes the other worse. + +Thankfully my taste buds are normal again but I know many other people are not that lucky and they are developing eating disorders from long covid..." +irr-pilot-106,covidlonghaulers,2021-11-28,comment,,,"I’m sorry. I’ve needed prednisone multiple times and have chronic airway inflammation problems and scar tissue after 10 months. You should see a pulmonologist and ask for pulmonary function tests to see how your breathing really is, that’s super important. Some kind of inhalers perhaps too. They are ignoring your problem" +irr-pilot-107,covidlonghaulers,2021-11-25,comment,,,"I am also pro-vax. I believe I had a couple symptoms from covid in March 2020 (fatigue and hair loss) that I didn’t connect. Vaccination kicked off crazy neurocovid March 2021. I just think it exacerbated it. I don’t talk about it much because I don’t want to be viewed as anti-vax, my kids just got vaccinated, we’ve been sticklers about everything waiting for vaccinations. But it’s also hard to ignore that it kicked off almost one month to the day after my second moderna shot" +irr-pilot-108,covidlonghaulers,2021-12-08,comment,,,"Hows your sleep? The reason I ask is because I can relate to the cognitive decline, anhedonia, mind feeling blank, sexual dysfunction all at 18 years old. This all started occurring after my mild COVID case. I was healthy & active, outside everyday to being bedbound because of the neurological effects. My shit left me housebound and not because of the physical aspect, but because of how severe the neurological effects are . I can't function at all normally. But for me it's linked to my sleep, following my recovery I've been averaging 0-2 hours of sleep a night. Fucken sucks knowing I can't even good sleep. Shit is fucking up my life" +irr-pilot-109,covidlonghaulers,2021-11-05,comment,,,"Yes to the non-classical monocytes question. + +The lab that did your test seems to have a different calibration than other labs we’ve seen here. + +I think you deserved more of an explanation of your case. If they haven’t cured you and followed up, you should loop back." +irr-pilot-110,covidlonghaulers,2021-12-04,comment,,,"You're so welcome! It's so much effort to navigate all of this when we're not feeling well. I take an enteric coated aspirin 81mg. Yeah, I didn't hear about nattokinase till more recently, so I've never given that one a try." +irr-pilot-111,covidlonghaulers,2021-11-24,comment,,,if i may ask how did you smoke with sob/air hunger?😂 i tried to smoke weed once 2 weeks after my initial infection and i literally thought i was dying haven't smoked since( been about 10 weeks) +irr-pilot-112,covidlonghaulers,2021-12-21,comment,,,"Hasn’t it helped people though…? That’s a generalized statement that doesn’t have a holistic picture of what’s written. It does not say that unequivocally, and it’s not mentioned in the summary which indicates again there’s a lot more nuance than you’re portraying" +irr-pilot-113,covidlonghaulers,2021-12-28,comment,,,"After my doc ran blood tests and found I was low in a bunch of minerals, I started eating two small pieces of liver a week. Not my fav food, but the results have been amazing. I feel SO much better. Not healed, but I'll take any relief I can get!" +irr-pilot-114,covidlonghaulers,2021-12-09,comment,,,"I had one xray at the ER on day 8. Doctor just said my lungs look fine and gave me prednisone which helped, 5 day course. No idea what showed up if anything. I had another Dr listen to my lungs when i had my heart looked at at a urgent care. She said she heard some congestion but it wasn’t bad. + +Edit: now that im thinking about it. The Dr also asked if i wanted antibiotics, i was puzzled by this and asked him what he thought and he just said no i think you’ll be fine. I didn’t think anything of it until now but maybe he did see some pneumonia on the xray?" +irr-pilot-115,covidlonghaulers,2021-12-09,comment,,,"My LH symptoms started several months after the initial infection after doing several strenuous hikes in the mountains. I’m not sure if it was the hiking, altitude, or a combination of both." +irr-pilot-116,covidlonghaulers,2021-12-30,comment,,,"That's a tough one. I am in the same boat as you.. I tried CBT and anxiety apps but neither have worked. I've tried both Prozac and Effexor and they both made my anxiety & POTS worse. + +I have a Xanax script and took it a few times but you can't live on that as a daily. + +Have you tried Buspar (buspirone)? That was the next one I was going to try." +irr-pilot-117,covidlonghaulers,2021-11-10,comment,,,"Had Covid in August too haha. So that’s when it all started, I’m 21 and used to work out regularly, I been taking it easy though and laid off the gym until some months pass. Standing hr would go to 120-130, now rarely goes over 110. Resting hr used to be like 90-95, now it’s 80-90. I guess there’s some improvement, still get the weird chest discomfort/tingling from time to time" +irr-pilot-118,covidlonghaulers,2021-12-15,comment,,,"Since October 2020. I just got a blood test back saying my atypical lymphocytes are very high, so I'm guessing it's an infection, as Lexapro usage would not cause that in blood work." +irr-pilot-119,covidlonghaulers,2021-12-05,comment,,,"Yes, never had the vaccine but caught COVID back in July of this year. All of my blood work has been normal except borderline high calcium and low/suppressed PTH. Also my TSH is normal but my T4 is about 0.2 ng/dl above the reference range. My doctor is running some other tests next month for the mild hypercalcemia." +irr-pilot-120,covidlonghaulers,2021-12-10,comment,,,Never. It helped me not worry about my symptoms tho. I went on in for 6 months before switching to zoloft. Now I microdose both together but it only helps my mood but not my brain fog or fatigue +irr-pilot-121,covidlonghaulers,2021-11-10,comment,,,Are you taking any kind of Acetaminophen like Tylenol? I would get this occasionally in the morning after taking Tylenol PM. Stopped taking Acetaminophen and haven’t had it since. +irr-pilot-122,covidlonghaulers,2021-12-18,comment,,,"I had quite a bit of that a few months ago and the best I could figure out was cramping/spasms of those muscles. I think it was surrounding my spine (doesn’t sound exactly like where yours is but maybe close?). After digging through med journals, I’ve been describing it as non-cardiac chest pain (because it seems like the doctors only cared if it was my heart). It was awful :( + +Mine did go away on its own but the spasms have migrated to other parts of my body. The only thing that ever helped was pain relief/medication." +irr-pilot-123,covidlonghaulers,2021-12-03,comment,,,"Vitamin E (large doses)along with enough D from sun, K from dairy/liver/eggs/meat and vitamin A seems to be a big game changer for me. Along with avoiding PUFAs strictly" +irr-pilot-124,covidlonghaulers,2021-12-17,comment,,,"The only one that found dysfunction for me was an endocrinologist. (hyperthyroid that was missed just running TSH at the hospital and PCP, took the full thyroid panel, high aldosterone, high cortisol." +irr-pilot-125,covidlonghaulers,2021-12-15,comment,,,"Haven't tried l-lysine, but serra+natto helps with p.e.m./fatigue, tachycardia & other vascular symptoms." +irr-pilot-126,covidlonghaulers,2021-12-04,comment,,,Holy cow 1.5yrs and lightheadedness still there !😵‍💫 Were you vaccinated in recent months? I'm asking this because vaccine can also cause it. Have you tried anything to recover from it? I was considering short term steroids/prednisone. I'm in shock because 6 months felt like forever! +irr-pilot-127,covidlonghaulers,2021-12-19,comment,,,"I thought so too about candida… didn’t really try anything yet tho. I went keto for like 10 days and that seemed to help a lot, but came off for the holiday. + +Why do you think it’s systemic candidiasis? What are you noticing? I’ve noticed I wake up with a white film on my lips pretty much every morning since my symptoms started 4 months ago…" +irr-pilot-128,covidlonghaulers,2021-12-04,comment,,,"It actually doesn’t. I didn’t notice any side effects. Im so thankful and lucky. I’m also on gabapentin 2-3 times a day, depending on whether I remember 😋 I didn’t notice any side effects with that, but I’ve been on it before for headaches so 🤷‍♀️" +irr-pilot-129,covidlonghaulers,2021-12-19,comment,,,"Hi! My partner does go into work everyday and sometimes is forgetful with the mask, BUT he did not get it and I therefore do not think I got it from him. + +I believe I got it on Saturday at an NBA game. I had my mask on the entire time, but those surrounding me did not and there’s no more social distancing. + +For context, I think I got it Saturday and my symptoms started Monday." +irr-pilot-130,covidlonghaulers,2021-12-10,comment,,,"I’m going through the same thing, it’s depressing. I wish there was a set path on treating this. Been trying Zyrtec, xyzal, along with vitamins and Pepcid. Haven’t fully recovered from this fog." +irr-pilot-131,covidlonghaulers,2021-11-19,comment,,,"I would suggest you stop running for a bit as that can make it worse. Try just going for walks? Do you take magnesium? Magnesium helps with palpitations. I also started drinking electrolyte drinks twice a day. I buy these tablets from the brand Nuun, You can get them at target or your Local grocery store. Stay very hydrated. 👌🏽" +irr-pilot-132,covidlonghaulers,2021-11-05,comment,,,"My calves constantly visibly twitch, as well as many other parts of my body. I wonder if Ativan helps by preventing it." +irr-pilot-133,covidlonghaulers,2021-12-26,comment,,,Yep. Autoimmunity. We might not do well with how covid trained our immune system. When our ramps up I get sick. +irr-pilot-134,covidlonghaulers,2021-12-30,comment,,,Lol don’t get me started. I had a PFT done which showed a slight reductions in percentage white exhaling and they perscribe me albertol (which I was actually prescribed that from a previous doctor back in 2020 when I went with breathing issues) never worked on me. When I explained to my lung doctor that it didn’t work and refused to prescribe me inhalers for extended periods of opening the airways. They all fucking suck +irr-pilot-135,covidlonghaulers,2021-12-02,comment,,,"MRI MRA CTA CT of head & neck EKG + +Antinuclear Antibody +ANCA panel for vasculitS +DNA DoubLe-stranded +OSONH +Lupus anticoagulant +sediment rate +Beta 2 glycoprotan +c4 complement +c3 complement +CRP +cardiocipin mineody +Lipid panel (stroke protocol) +TSH +Vitamin B12 +Nucleated red blood cells + +As well as the regular degular CBC CMP troponins D-dimer + +Sorry if the text on this is a little choppy I’m using talk-to-text" +irr-pilot-136,covidlonghaulers,2021-11-19,comment,,,"H1 antihistamines really helped my lung pain, sob, and fast heart rates. I replaced benedryl with hydroxizine after the doc recommended it since it was safer and had a longer half-life. Sorry you are going through this." +irr-pilot-137,covidlonghaulers,2021-12-27,comment,,,"Mullein! There are ready-made extracts that can be used orally/sublingual, or added to a drink. It grows wild where I live and I have taken the leaves, dried them out slowly in a low heated oven. At this point I have prepared it as a tea and also have smoked it, which is fast acting to expel and clear my lungs. The dried leaves can also be boiled down until most of the water has evaporated, remove said leaves and then add vegetable glycerin to create my own extract." +irr-pilot-138,covidlonghaulers,2021-12-18,comment,,,I hear you with the belly inflating. It’s very uncomfortable. I just took my last super strength turmeric tonight. I should go get more soon. +irr-pilot-139,covidlonghaulers,2021-12-28,comment,,,"Wonder if the same applies to this new Variant since it stays in the upper bronchial/wind pipe per the studies so far 🤔 + +studies show that to be one of the main reasons it spreads that much more quickly and it doesn't fully drop down into the lower end of the lungs which is good news since that's where it harms the most + +All in all I'm over this Virus - hopefully this is the last mutation and we can develop some Herd immunity bad enough dealing with Long Haulers but reinfection ..sheeesh" +irr-pilot-140,covidlonghaulers,2021-11-16,comment,,,"Yeah, I don't miss socializing, just the professional benefits. Many in my industry have adapted to virtual meetups which is a blessing for me in every way, esp now with LC causing me to have significantly lower energy levels than before. But since vaccines, most folks have resumed their preferred in person gatherings. + +Which I was *almost* okay with. Then delta stopped by to visit. And vaccinated folks stopped caring about masks in crowded settings. :-/ I'm high risk, not willing to chance reinfection, so unless it's actually essential, I'm riding things out past the potential holiday surge. + +I feel paranoid about it until I remind myself it's almost 12mo later and I'm still not recovered. And the anger at getting infected right before I would've been eligible for a vaccine reignites." +irr-pilot-141,covidlonghaulers,2021-12-30,comment,,,"Bought it, but, holding off on taking it. I’m on Pravastatin and Maraviroc and want to see how that goes." +irr-pilot-142,covidlonghaulers,2021-11-24,comment,,,"Hi! I have totally changed my diet around and take about an hour walk everyday. I eat super clean, and stay on a Mediterranean diet, it was one of the first things I did. But I am so fatigued and dizzy it is hard to work out a ton, thank you for your advice! Just trying to get through it :(" +irr-pilot-143,covidlonghaulers,2021-11-24,comment,,,I’ve been in crushing loneliness. Crushing because I don’t feel like I could be a good partner to anyone right now so I don’t put myself out there but I went into this single too. I’ve lost all my friends because I stopped texting them back because it felt overwhelming. It’s my own fault but I’m feeling very extreme loneliness lately. Thank you for making this post. +irr-pilot-144,covidlonghaulers,2021-12-14,comment,,,"Alternating diarrhea and constipation, sensitivity to most fruits, veggies and gluten, had many reactions from medicines and supplements but seems like it has gone now, sometimes i bloat and sometimes o fart the entire day. It's been going on since april 2021... Im diagnosed with ibs now! And this shit seems never ending!! Never had any such issues precovid." +irr-pilot-145,covidlonghaulers,2021-12-28,comment,,,The fact that eating flares up your breathing issues suggests that they may not be lung-related. Have you ever visited an ENT doctor? You could have silent reflux. It mimics asthma. +irr-pilot-146,covidlonghaulers,2021-12-15,comment,,,Do you take all three? I’ve been seeing good benefit from natto so far but deciding on serra or lumbrokinase next! +irr-pilot-147,covidlonghaulers,2021-11-22,comment,,,"Hmm. Interesting. I found teas that are deep red in color like hibiscus, hawthorne berry, elderberry, goji berry and also star anise all seemed to help. A bunch of these have quercetin or other very beneficial bioflavinoids as well as great minerals and vitamins. Actually spices that seemed to have very bright colors also seemed to have an impact like sprulina, beet powder, turmeric and cloves. Just hard to keep up with all of it sometimes. Feel the same way with all the supplements. Just too much to remember to take sometimes." +irr-pilot-148,covidlonghaulers,2021-12-25,comment,,,"Brian fog and head pressure subsided as I started to incorporate daily steady state cardio. At first I would relapse horribly. I coupled this with ice cold showers. It completely went away when I started vitamin D3, upping fat intake. Whatever was left of any sort of brain fog went away completely post usage of fluconazole." +irr-pilot-149,covidlonghaulers,2021-11-18,comment,,,"Hi. My breathing is still weird after 7 months, but I can tell you that you can barely notice the improvement, but it does improve. It’s like 0.001% better each day. It sucks, but the anxiety does make it worse.sit outside and meditate, take inhalers off you can, breathing exercises closing your eyes before sleeping. Those things all helped me." +irr-pilot-150,covidlonghaulers,2021-11-11,comment,,,"Previous infection and fully vaxed. + +Got my flu shot on Monday. The day after was not great, like a hangover. Pfizer 1 was a bit worse, Pfizer 2 was similar to flu vax, but lasted longer." +irr-pilot-151,covidlonghaulers,2021-12-13,comment,,,"Resting helps prevent the worse relapses but time is the only true healer in this so far. + +Be careful too. My post exercise relapses would hit 3-7 days after the workout. Sneaky. And the relapses would stick around for several days to weeks." +irr-pilot-152,covidlonghaulers,2021-12-09,comment,,,"My doctor has me on Carvedilol (25 mg twice a day) and I take 325 mg asprin at night, when my symptoms are usually the most extreme. Before I got prescribed medicine I would take asprin which helped some with palpitations." +irr-pilot-153,covidlonghaulers,2021-11-12,comment,,,"Ended up finding some holistic colonoscopy place. Tube goes in, flush your intestines with water for 45 minutes + +Took 3 procedures + +Thankfully that stage is behind me now" +irr-pilot-154,covidlonghaulers,2021-12-30,comment,,,"Ive heard good things about the throat sprays, although Ive tried things like lidocaine with little effect. I am not vaccinated due to autoimmune issues." +irr-pilot-155,covidlonghaulers,2021-11-12,comment,,,"Still here, got sick april 2020, not much difference. POTS, PEM, Fatigue, MCAS you name it I got it. Trying the nattopeptase and serrapeptase thing since a couple of days, feeling a bit better, but could be placebo." +irr-pilot-156,covidlonghaulers,2021-12-26,comment,,,"It maybe but it can lessen in time, and improve. It’s getting the right diagnosis- like what kind of PoTs you have... I have hyperadrenalic PoTs. I get horrible adrenaline surges which get bad at night. I’m taking Amtripyline for my sleep... it really saves my bacon and helps with headaches" +irr-pilot-157,covidlonghaulers,2021-12-17,comment,,,"I understand not spreading disinformation, but it’s so frustrating to not even be able to have an intelligent conversation about certain topics without getting banned or ridiculed. Sorry that happened to you." +irr-pilot-158,covidlonghaulers,2021-11-05,comment,,,"I google her name every now and then. [Here is another one](https://www.youtube.com/watch?v=yXnUW4HpJNs) I got good things from. + +When the vaccine became available, Dr. Klimas had the answer for me [here.](https://www.nova.edu/nim/To-Vaccinate-or-Not-with-MECFS.html) She is my unofficial doctor." +irr-pilot-159,covidlonghaulers,2021-11-05,comment,,,"After 19ish months it’s been a bit easier to handle, but still get overstimulated when I have to be productive. I used to be like this before covid and usually a few hours to recover did the trick, now I need a day or two to recover. I did stop work for a few months after I got LH as the overstimulation would start as soon as I was starting to work on something." +irr-pilot-160,covidlonghaulers,2021-12-01,comment,,,"Got vaxxed, very little side effects, got super exposed to covid and didn't get it. Couldn't be happier." +irr-pilot-161,covidlonghaulers,2021-12-17,comment,,,"Yep, the insomnia is horrible. Some things that have helped me: + +-CBD/CBG at 500 mg before bed (one of the best things ever, I get mine from TweedleFarms.com) + +-Making sure I'm full, not hungry at all. Keeping snacks by the side of the bed for when I wake up. + +-Childrens Tylenol, since fevers seem to be waking me up. This works well, but it can damage your liver over time so I use it sparingly. + +-Benadryl (I also use sparingly due to it being linked with dementia later down the road) + +-Vitamin D supplements in the morning to help regulate melatonin + +-Red/infrared light therapy device on the back of my head and neck + +-Getting 13-12 hours of ""sleep"" to make up for the insomnia" +irr-pilot-162,covidlonghaulers,2021-11-12,comment,,,"Agree, fully! Since I'm only in my 40s (parent, a career I was happy with, etc.) I was hopeful this wouldn't be the case, but then I tested with values in all 3 AChRs from neurology and that was my come to Jesus, so to speak. I was wondering how people had the competency to call and make appointments to get into the doctors soo soon, energy see soo many doctors, clarity to remember their issues, could just think clearly enough to *talk* to the doctors about what was/is going on. I never had those experiences. Choline has helped me a lot, I don't feel brain dead any more, or like my brain is anesthetized so I know it's there but can't use it voluntarily. So yeah." +irr-pilot-163,covidlonghaulers,2021-11-05,comment,,,"Wow, I deadass thought the same when I got my second shot. Felt great for a few weeks. Then I started exercising again and I felt the issues come back. Going to start taking supplements and only exercising lightly. Hopefully this bs stops for good eventually." +irr-pilot-164,covidlonghaulers,2021-11-18,comment,,,"O2 levels are usually within the acceptable level 96-98 - yet I can still be gasping, which makes sense when you consider the micro-clotting theory and failure to deliver O2 to damaged tissue sites. There's oxygen in the bloodstream, but it can't get to the places that needed. (I mean, who really knows what's happening - but that's current thinking anyway). + +Do you have issues with your O2 levels?" +irr-pilot-165,covidlonghaulers,2021-11-17,comment,,,"Very common. Id recommend magnesium, benadryl, weed edibles (if you roll that way), and/or ativan if youre desperate." +irr-pilot-166,covidlonghaulers,2021-12-23,comment,,,Every morning for like 18 months I would vibrate when I woke up.. it felt like the demons left a cell phone on vibrate in my stomach.. eventually this simmered down and I don’t feel it often but I’m on month 21 now. Horrible virus! +irr-pilot-167,covidlonghaulers,2021-11-15,comment,,,Make sure to expand your blood volume with lots of water and electrolytes. Trioral from Amazon or nuun tablets are really good. It raises my blood pressure and helps my orthostatic intolerance the most. +irr-pilot-168,covidlonghaulers,2021-11-25,comment,,,"What have you tried so far? I think a lot of people with come and go sob feel better with anthistamines, have you tried that? Do you have pain or just sob? Have you had imaging done since you got over your acute illness?" +irr-pilot-169,covidlonghaulers,2021-12-09,comment,,,"I had this in the first 4 month after my Pfizer vax. Pacing, Statins, Magnesium and time decreased the problem for me." +irr-pilot-170,covidlonghaulers,2021-11-05,comment,,,"Yeah there's some early evidence to suggest that a mitochondrial process may be one of the causes. It will be interesting to see the results! + +Is phos-cal something you can buy or prescription access only?" +irr-pilot-171,covidlonghaulers,2021-11-18,comment,,,Thank you for this reply. I’ve been very up front with everyone that i’m not myself right now and can’t do what i used to +irr-pilot-172,covidlonghaulers,2021-11-19,comment,,,"I just read something interesting regarding ACE2 receptors , inflammation and how Kobophenol could actually prevent chronic inflammation . + +Kobophenol is isolate from the Roots of Caravans sinica + +https://www.sciencedirect.com/science/article/pii/S221475001830132X" +irr-pilot-173,covidlonghaulers,2021-11-14,comment,,,Shortness of breath! It has its moments but nowhere near as bad as last year where I felt like I couldn't breathe! The nasal spray I'm currently on for the inflammation in my nose majorly helps with that! +irr-pilot-174,covidlonghaulers,2021-11-29,comment,,,"YES! Mine would be worse as I started to relax. For example, watching TV I would jerk or twitch and falling asleep. I even got full body spasms at times. Kind of similar to myoclonic jerks, but more intense. Interestingly, if I went and slept sitting up or on an incline they would be less frequent to where I could fall asleep uninterrupted. I'm assuming this has something to do with circulation/electrolytes/cardiovascular." +irr-pilot-175,covidlonghaulers,2021-11-23,comment,,,I got prescribed medication after three appointments where my bp was high. And ER just let me go home after checking me out. +irr-pilot-176,covidlonghaulers,2021-11-10,comment,,,"I had it about six months after infection. It coincided with some insomnia, which was also a new thing for me...I was waking up every hour on the hour, pretty much. Once I started sleeping more soundly, the twitching stopped." +irr-pilot-177,covidlonghaulers,2021-12-17,comment,,,"I have no idea if I have access. I'd imagine so, it's just convincing the right doctor in the right specialty to refer me. Who would I go to for that?" +irr-pilot-178,covidlonghaulers,2021-11-10,comment,,,"I'm suffering from this for over 5 months. I have severe throat and swallow pain everyday and it's been nightmare. Diet is good, got a wedge pillow and have been doing PPIs for months with no help. The throat pain is unbearable, please any suggestions?" +irr-pilot-179,covidlonghaulers,2021-12-07,comment,,,"Does being sick and not taken seriously count as a symptom? Cause that shit is weird AF...especially in 2021. We're expected to acknowledge and respect every individuals own version of reality...unless you have long covid or are vaccine injured. + +But more seriously. I've had a heart attack at 29, that was a wild experience. +I also get these wildly intrusive, vivid, and morbid thoughts. I'll just zone out for 5 or 10 minutes and my brain takes me on a terrifying ride that's hard to snap out of. It's like having a nightmare while you're awake." +irr-pilot-180,covidlonghaulers,2021-11-12,comment,,,"Not sure but something is up with the immune system and covid/vaccines. I developed small fiber neuropathy 3 weeks after 1st pfizer, that was 09/13 and I’ve been jacked up with that since. Got covid 10/25 and now dealing with symptoms of that lingering. There are many parallels between LC and LV people. So who knows maybe it is caused by a overreacting immune system." +irr-pilot-181,covidlonghaulers,2021-12-25,post,Booster side effects worse than the 2nd shot,,Been almost 36 hours and still feeling like I got hit by a bus. Definitely not flu like — the nausea and aches and generally off feeling are 💯 covid-reminiscent. Hoping Christmas Day is better! +irr-pilot-182,covidlonghaulers,2021-11-10,comment,,,I understand your situation and anxiety. I felt much worse after a month with Moderna. But I know another round of coronavirus has the potential of an even worse experience. Currently I feel the best I have been for the last 20 months. So the setback was only short term and it protected me. I have anxiety of getting the booster but I think I will do it anyway for the added protection. +irr-pilot-183,covidlonghaulers,2021-11-17,comment,,,I take 20-40 mg famotidine and 1 g antacid about 30 mins before bed. I had a reaction with wheat before covid but only in beer and not insomnia. Now after 20 months it seems like there's a higher threshold with the wheat thing. I can have small amounts of beer and bread but I usually avoid them completely. +irr-pilot-184,covidlonghaulers,2021-12-29,comment,,,"Hi. Thank you so much. No, I haven’t tried to take it out but I’ve been thinking about it. Just to get my body back to baseline. + +I’ve had two ultrasounds both nhs and private and so far, IUD placed properly. + +PID is something I haven’t thought about at all. May I ask what makes you think of PID? I’m going to start researching that now. + +Thank you again! Appreciate it" +irr-pilot-185,covidlonghaulers,2021-12-29,comment,,,"I have seen success with Keto diet (<25g carb per day). Keto is a naturally anti-inflammatory diet. I can’t say for a fact that it works, but I felt good while doing it. + +It’s very annoying and expensive to maintain though, so I stopped after 12 days." +irr-pilot-186,covidlonghaulers,2021-11-19,comment,,,"Gabapentin didn't help my joint pain either. Zero effect. I was surprised that lyrica helped. It could probably cause similar side effects though, and certainly similar withdrawals. + +There is one other thing that helped my joint pain... CBC. It's a cannabinoid like CBD (which didn't help me). The effect only lasted 4 hours though." +irr-pilot-187,covidlonghaulers,2021-12-21,comment,,,"I got covid, then post- covid booster. +Here, recovered patients get a booster 6 month after recovery, standard protocol. + +Thanks for your comment!" +irr-pilot-188,covidlonghaulers,2021-11-04,comment,,,"I've had strong palpitations (doctor can't hear my lungs over my pounding heart) since the beginning in Mar 20, until a few months ago when I started taking COQ10 (general recommendation from me/cfs doctor). It does not complete eliminate the palpitations as I still get it triggered by things like food but it eliminates the constant every second of everyday. When I first take the pill it may make me feel worse for the day but the subsquent days the palpitations are gone when I don't take it." +irr-pilot-189,covidlonghaulers,2021-11-16,comment,,,Yes you do! Just remember the only thing that really works is pacing and not overdoing it. I for instance recovered with an antiviral but this won't work on everyone. +irr-pilot-190,covidlonghaulers,2021-12-19,comment,,,"Patterson has also said the spike they are finding in post vax long haul is “mutant” , not the same as the spike produced by the virus." +irr-pilot-191,covidlonghaulers,2021-12-06,comment,,,"Terribly sorry man you had to go through this. Try intermittent fasting like 16/8 and see if you could start low dose colostrum (e.g. 500mg/d) taken first thing in the morning. How is your Lactobacillus and Bifidobacteria? Most people with CFS are low in lacto, Bifido and E. Coli. Also try and boost your short chain fatty acids especially butyrate. You can get it in ghee and grass fed butter. I take one tsb ghee before bed and it literally lifts my mood. Read on its anti-inflammatory properties." +irr-pilot-192,covidlonghaulers,2021-11-18,comment,,,"Same here. These are things I've tried, maybe us sleep deprived bunch can share our trial and errors lol- + + \-valerian root (awful smell. really helped relaxation but seemed to give me premature heartbeat after a while) + + \-melatonin 5mg (would wake up after 5 hours or so) + + \-hydorxyzine (prescribed by previous pcp who told me it's just anxiety. Helps with sleep but it's intended for short term use) + + \-benadryl (actually helps with a long night of sleep but drowsy for the next day. remember NOT to get the non-drowsy type cause that's what we're aiming for!) + + \-just eat shit ton of food and use the food coma to fall asleep (awful acid reflux) + + \-drugstore pain relief PM (acetaminophen & antihistamine) (does the job so far but I'm only a week in rn)" +irr-pilot-193,covidlonghaulers,2021-11-16,comment,,,"\+1. Going back to the other posts ive read about large population of long haulers having b-adrenic auto antibodies, which seems to be the same auto-antibody in POTS patients, and considering the overlap in symptoms, I'd say auto-immune damage is most likely. + +From the specialists I have spoken with (neurologists and immunogolist) they both said that the infection caused damage, and now it needs time to heal, there is no ""cure"" so to say. + +It seems like the only real way to assist that healing is a healthy diet, anti-inflamatories and supplements which are proven to assist auto-immune conditions, like l-glutamine and vitamin D." +irr-pilot-194,covidlonghaulers,2021-11-10,comment,,,"I am so sorry you are going through this. I think a lot of us understand the difficulty and pain associated with long covid. The anxiety and depression from this is very physical and difficult. I personaly started to seriously meditate, I also had a few sessions with a hypnotherapist which helped quite a bit. + +A quick question did you have a vaccine within the last few months? My first dose set me back significantly." +irr-pilot-195,covidlonghaulers,2021-12-08,comment,,,"I posted a legitimate article from a legitimate website for medical information. + +That information could be very beneficial to you if you’re struggling with long Covid. What better way to show gratitude and thanks than to insult me and try to devalidate the research I posted without even reading it?👍" +irr-pilot-196,covidlonghaulers,2021-12-25,comment,,,"I use edibles - sativa mostly (a strain that makes me more creative, and not indica, which makes me tired) - and get the munchies. For some reason, I can taste layers of flavor that I don't really taste otherwise and this actually makes food irresistible. So much so that I am glad I don't have enough money to buy it often bc I'd be big as a house. I've lost 90# (needed but I'd rather not do it this way) and am still losing. + +It also helps with some other disorders I have (cPTSD and osteoarthritis). Be careful, it freaks some people out, so if you decide to try it, go slow. + +Happy holidays!" +irr-pilot-197,covidlonghaulers,2021-12-17,comment,,,"March 2020 for me and I’m still dealing with the exact same thing. I’m on Zoloft, which helped with the depression. I’m not as smart as I once was. I even changed jobs because I couldn’t do my old one without making mistakes. My new job is much more forgiving." +irr-pilot-198,covidlonghaulers,2021-11-29,comment,,,"interesting i take a ton of supplements also including all of those except natto serra and beta-blockers. my cardiologist said i didn't need them bc my hr only jumps 10-20 bpm upon rising, i also do breathing exercises im about to hit the 3 month mark in a couple weeks. i didn't take aspirin bc i heard it's causing tinnitus in some and you're not supposed to take natto and aspirin together" +irr-pilot-199,covidlonghaulers,2021-12-04,comment,,,"I believe some of the SARS COV 1 were recovered in three years, the study was stopped at 10 years and there were some still ill and no more follow up on them." +irr-pilot-200,covidlonghaulers,2021-12-20,comment,,,Doing drugs is the only reason I can deal with brain fog. It just feels like being super baked with no euphoria. No drug can prepare me for malaise though +irr-pilot-201,covidlonghaulers,2021-12-18,comment,,,"I have only had itching and painful swelling in the hands. I did read you should avoid drinking or eating cold but I mean I’m no specialist. What if both our cases are very different? +Latest symptoms are pain on all the arms, muscle, joint, soreness. They fall asleep again which had not happened in months. I did recently stop my magnesium which seems it may have been irresponsible now that I think about it. I hope we get better. +Sending healing vibes." +irr-pilot-202,covidlonghaulers,2021-12-16,comment,,,"That's the only thing that helped me with the fatigue so I'm glad I took it, I was able to have almost normal days. But symptoms came back after I stopped unfortunately, so I should stay on long term low dose Prednisone until the fatigue goes away. +Be careful of the insomnia you can have if you take it too late." +irr-pilot-203,covidlonghaulers,2021-12-06,comment,,,"I saw this, I haven’t tried to lift a TV but i lifted a heavy ass pumpkin on Halloween. Probably weighed around 70-80lbs maybe im way off but for sure over 50lbs. and i felt out of breath but recovered pretty quickly. I also can lift water jugs without any symptoms" +irr-pilot-204,covidlonghaulers,2021-11-07,comment,,,I hope your symptoms improve. I am very pro vaccination. Unfortunately one of my coworkers started experiencing long hail symptoms after her second dose of the vaccine. It’s been since March and her symptoms remain the same and test show up with nothing. I’ve told her about people in your situation and it has given her a bit of hope. +irr-pilot-205,covidlonghaulers,2021-11-05,comment,,,"Okay I'm. female but covid made it impossible for me to orgasm for about 2 weeks. I also am struggling with trouble emptying bladder, peeing every 5 minutes, bladder pain, etc. Antibiotics only destroyed my insides. + +Waiting to see a urologist next week." +irr-pilot-206,covidlonghaulers,2021-11-10,comment,,,Months 3 and 4 were the worst ... I too got my symptoms from taking 3 rounds of antibiotics... It has put my gut upside-down..... I wish i had not taken antibiotics...gut issue seems forever now im allergic to many foods thats causes stomch pain amd diarrhea +irr-pilot-207,covidlonghaulers,2021-12-30,comment,,,"Did it start to fade straight away, or after a certain month. I was infected mid sep, so hopefully will get some improvements soon. + +Might ask to give fluvoxamine a go." +irr-pilot-208,covidlonghaulers,2021-12-17,comment,,,"I feel you. +I’m in a very similar situation and after talking to everyone at work I realized just how much I had been catastrophizing and how much anxiety I had built up around the issue. + +You worked for this company/organization through a global pandemic and then you got sick. if they’re not gonna recognize and honor that then you can make up ur mind about what to do then but until the actual meeting it’s all anxiety. +I’ve really had to chill and not worry so much. +Rule #1 Don’t Panic +Don’t get all catastrophic minded it’s a pandemic after all." +irr-pilot-209,covidlonghaulers,2021-11-26,comment,,,"Tell your doc, they can give you an inhaler script. Probably Albuterol which is what I use, but I have two others also which I’m not using so yours could be different. It helps" +irr-pilot-210,covidlonghaulers,2021-11-08,comment,,,"Oh no! Zyrtec and zxyzal helped, but Claritin did nothing for me. Best of luck to you. It’s such a hard time." +irr-pilot-211,covidlonghaulers,2021-12-05,comment,,,I didn't but am thinking about it. Also the fact that my legs are going dead and I really don't care the outcome. +irr-pilot-212,covidlonghaulers,2021-12-01,comment,,,I’ve had it before not with covid tho but basically when you push down on your chest wall with your fingers it causes musculoskeletal pain. Also when your moving those muscles it will hurt and the pain is relieved by ibuprofen. +irr-pilot-213,covidlonghaulers,2021-11-21,comment,,,"I got it July 2021 after being double vaccinated. I'm nowhere near as sick as some of you but still have fatigue, brain fog, headaches, sinus pressure, no sense of amell, anxiety, and don't sleep properly anymore. +Fexofenadine has really helped, started that in the past two weeks. Nothing else has made any difference" +irr-pilot-214,covidlonghaulers,2021-11-20,comment,,,"Ahh, that's crazy! I wonder if it has to do with the placement of the shot? I don't even know how to check that haha the muscle around where the shot was administered is very tough and feels like a bruise still but looks normal for me. You'll have to come back and update me when things get better for you. I'm curious how long it'll take before i can sleep on that side again without discomfort." +irr-pilot-215,covidlonghaulers,2021-11-15,comment,,,"Have you had a Tryptase blood test yet? See https://healthresearchfunding.org/tryptase-blood-test-results-explained/ + +I'd get checked out by an allergy specialist if I was in your position. COVID can apparently sometimes cause mast cell activation disorders, which can present with those kinds of symptoms." +irr-pilot-216,covidlonghaulers,2021-12-07,comment,,,"Ox Bile Salts have really turned around my gut issues, that along with MSM supplements and ACV before a decent probiotic- feeling pretty good" +irr-pilot-217,covidlonghaulers,2021-11-06,comment,,,"On the one hand this is nuts because wide-spread testing wasn't an option everywhere in mid 2020 IIRC, so anyone who wasn't hospitalised with Covid at the time could well have slipped through that net. Lack of a CV19 positive test doesn't mean that you're any less likely to have LC - and there should still be a duty of care towards you. + +That said, as others have pointed out, there is not magic wand at the LH clinics. In the UK, they're way behind the curve and only offer support rather than treatment." +irr-pilot-218,covidlonghaulers,2021-12-06,comment,,,"Similar situation here. Not sure what is the cause of my neuropathy. I am starting to think now that maybe it was induced by COVID. I have burning feet and hands, and have had episodes of intense full body twitching. All tests come back normal except autonomic Small fiber neuropathy-but my doctors don’t think it’s that relevant. Skin biopsy negative form small fiber neuropathy, and so was EMG and all other blood work. Anyone else have a similar situation to me? Burning feet and stabbing pains are horrible. I am only on gabapentin which helps. Anyone else in the same boat? I feel lost and confused." +irr-pilot-219,covidlonghaulers,2021-12-12,comment,,,"Ive read a lot about how tyrosine can get depleted by chronic stress, since your body doesn’t produce/process it as easily. For me when I continued to take it after getting back to normal I started getting some insomnia, so I went off of it. Taken if a few times for maintenance since the initial first week-ish but def not a regular supp anymore. I linked the article I modeled my dosing off in a comment above! + +R-Ala is on my radar of supps to try, right now I’m trying to combine a few other anti inflammatory type herbs but I’m still experimenting around! Fingers crossed, I wish you luck" +irr-pilot-220,covidlonghaulers,2021-11-26,comment,,,"i doubt it, just Covid being covid lol, causes tons of inflammation in the body give it some time how long have u had it? my back sensation just started a couple days ago and kind of only feel it if i'm sleeping/sitting a certain way and if it was polymytosis steroids would be able to help with that. but when i do put a heat pad on my back i breathe a lot better so idk. u can get tested for polymitosis(elevated muscle enzymes) and it'll probably come back negative with everything else that covid messes up" +irr-pilot-221,covidlonghaulers,2021-11-12,comment,,,"Hey at least you kind of know what's causing this and that there are others like you. I didn't have that. Plus, this is temporary for most people, so that should give you some hope! Have you tried taking thiamine, bone broth or antihistamines? Some people find relief from those." +irr-pilot-222,covidlonghaulers,2021-11-30,comment,,,"Just to name a few: Damiana, Blue Vervain, fever few, eye bright, valerian root, seamoss and bladderwrack, burdock root, yellow dock, nettle, oregano oil…but a lot I only take when needed. For example, fever few is only for those nasty headaches and eyebright is when I feel like my vision is off for a few days or I know I have to look at my pc for extended periods of time. But I take damiana and blue vervain every stay for anxiety, pain, and to calm my CNS. I take valerian root everyday for sleep etc. they are truly amazing with what they do and it’s all natural." +irr-pilot-223,covidlonghaulers,2021-12-21,comment,,,"I had perfect vision prior, and while they still say I have perfect vision (with some new near-sightedness), glasses have definitely helped. + +As already mention its probably either reduced bloodflow or a nerve issue." +irr-pilot-224,covidlonghaulers,2021-11-12,comment,,,"I wish you all the best and sincerely hope that this treatment brings resolution to your long Covid. Please keep us posted. + +Are you comfortable sharing some information about your symptoms and this experimental treatment?" +irr-pilot-225,covidlonghaulers,2021-11-10,comment,,,"I had lh symptoms and vax (moderna) helped a lot. If you're worried about tachycardia, see if you can get shot in your gluteus--getting it in larger muscle group further from your heart may help with that potential side effect. +Source: an md friend of mine had her 2nd shot in glute d/t tachycardia from 1st shot. She did fine." +irr-pilot-226,covidlonghaulers,2021-12-16,comment,,,"Long hauler since June 2020, what really helped was taking an SSRI for a couple months to calm the body down. Been taking atenolol for over a year now. It's hard to find the right combinations of medications. Rest, water and more rest. It will get better!! I sounded just like you at the 1 year mark as well. You're not alone! I know for me I was so tired of going to doctors only to hear that they have no clue what to do. BTW I am a nurse, yes that's how I got it. Felt like I lost my career working in the hospital to going to work as a school nurse. I do love what I do now and am able to keep the pace which makes me feel better about myself. Best of luck to you!!!" +irr-pilot-227,covidlonghaulers,2021-12-24,comment,,,"Thanks for sharing! Glad to hear you are you are feeling better. BTW, did you happen to have gut issues?" +irr-pilot-228,covidlonghaulers,2021-11-11,comment,,,"One thing you mention that I don't see discussed very often is the benefit of Taurine. I understand that it's good for reducing endothelial dysfunction - but I also find it's a good sleep aid for people who suffer from anxiety or excessive worry at night. Obviously people need to see what's right for them, but my understanding that it's quite a safe supplement. I use it in my stack daily." +irr-pilot-229,covidlonghaulers,2021-11-20,comment,,,"It's my opinion that covid screws with our neurotransmitter system. Most (not sure about all) anti-depressants work to increase the serotonin or encouraging the receptors to accept more. Ie: the medication COULD reverse some of your symptoms. + +I started Zoloft this summer. Two weeks ago, I started taking GABA. Both are neurotransmitters. I saw improvement with both. + +Edit: hit reply too early" +irr-pilot-230,covidlonghaulers,2021-11-27,comment,,,"I got a load of rashes and itches, and realised some of it was fungal, but it was much less severe than yours, and eating food with coconut milk and coconut cream, and using a coconut oil body cream was enough to deal with the fungal infections." +irr-pilot-231,covidlonghaulers,2021-11-11,comment,,,"I am so glad you shared this. I haven't slept ""normally"" my entire life but things have been extra bad this year. I had Covid at end of December and have suffered with unrelenting insomnia this year. I finally got prescribed a medication and it does help me fall asleep just not stay asleep. I couldn't put my finger on what was causing it and believe me, I've had plenty of awake hours to think on it. + +Thank you!" +irr-pilot-232,covidlonghaulers,2021-12-31,comment,,,It came and went for about 2-3 months starting from month 5 so I guess it depends. It hasn't happened in a while. +irr-pilot-233,covidlonghaulers,2021-11-18,comment,,,"Me too, me too. And thank you for being one of the rare healthcare workers who is aware and working with our population. Im glad, and also terribly disappointed to hear your grandfather is one of us. I hope things stabilize for him as well.. No pun intended, sorry." +irr-pilot-234,covidlonghaulers,2021-11-22,comment,,,"Took 16ish months to come full circle. Was running, lifting and doing CrossFit the last 2 months. This round of covid knocked me back slightly, but I am back to lifting and fast walking. I would assume that In 2-3 months I’m full back based on how I feel now. Only symptoms I have are some slight sob and some very slightly faster heart rates." +irr-pilot-235,covidlonghaulers,2021-12-12,comment,,,Yes. I got COVID in march. Because it was so painful my ENT doctor gave me two injections with steroids which did not work. Last Friday I went back and now I got steroids and a inflammation killer combined. One side feels much better! The other side not so yet. +irr-pilot-236,covidlonghaulers,2021-11-08,comment,,,"Deal with it everyday. Only break i get is when i take Motion sickness pills (Meclizine, dramamine) + +That feeling you describe of swaying like you're on a boat? Sea sickness pills! Of course! + +The relief is temporary though and the body adjusts to it quickly. I have found no other source of relief in 9 months. + +Seen the ENT, seen the Neurologist, all worthless. They have no idea what it is or how to cure it" +irr-pilot-237,covidlonghaulers,2021-11-24,comment,,,Nothing that I know of. It did go away within a month after starting blood pressure meds. But I don’t know if it’s because of the meds or if my the inflammation in my vessels went away. My veins were bulging and visible through my skin. I have a darker complexion and was never able to see my blood vessels before. +irr-pilot-238,covidlonghaulers,2021-12-31,comment,,,"Horrible idea that, they can stick that right up their arses, as far as long haul is concerned there are some exciting things available/coming: +- Stellate Ganglion Block - for autonomic nervous system dysfunction found in those with LC/ME. +- H.E.L.P Apheresis - removes microclots and cleans blood. +- Anticoagulants +- Bc007 +- Ivermectin as well as other drugs, monoclonal antibodies - been shown to be affective against spike protein (Dr Been latest videos) + +There will be more but I've had a few new year beers already. + +But sticking more of what made me bad inside my body is the last thing I'm going to do haha." +irr-pilot-239,covidlonghaulers,2021-12-27,comment,,,"B12 and NAC and water helped me a lot. I had it about 6 months and then just brain foggy occasionally since. Rest was important. Every time I overdid it I almost immediately regretted it. And no alcohol. Alcohol still makes me feel like crap. + +What I wanted to say was I felt this way too. But it passed. Don't give up." +irr-pilot-240,covidlonghaulers,2021-11-13,comment,,,You might want to add gargling to your regimen. Listerine Cool Mint has been found effective in a study if you don’t like the idea of iodine. I also heard xylitol. Are you asking if Valtrex could work on covid? I think they’d have discovered that by now. You’ll want to ask your doctor if ivermectin is advised. Dosage is different in covid than in worm and helminth infections. +irr-pilot-241,covidlonghaulers,2021-11-02,comment,,,"Granuloma popped up in a CT last week. SoB hit me in January of 2021, I believe I was infected in the beginning of 2020. I have tried since the SoB hit me to be seen by a pulmonologist. Consult was put in by my PCP back in February. + +I impatiently waited 8 months to be seen. I raised hell when they cancelled my September appointment and rescheduled for early December. The reasoning for the cancellation was my appointment was not a priority." +irr-pilot-242,covidlonghaulers,2021-12-23,comment,,,I’ve got an excellent doctor now!! Thankfully. He took my list of symptoms and is doing thorough tests now. I’m wearing a heart monitor and he thinks it could be MS. Me arms and legs have been going numb now. +irr-pilot-243,covidlonghaulers,2021-12-09,comment,,,pre-covid i was low to mid 60s resting. now even taking metoprolol the lowest ive gotten is low 70s but usually a little higher. it has improved very slowly over time +irr-pilot-244,covidlonghaulers,2021-12-15,comment,,,"I tested positive the same day as you and tested negative November 27th. A week later I did develop a sinus infection that was extremely bad and after being on antibiotics, I’m STILL coughing and dealing with drainage. Which is why I’m on this thread in the first place. I am so miserable with this cough ;( I’m not sure what you’re asking aside from that but yes I also had a sinus infection almost immediately after having Covid" +irr-pilot-245,covidlonghaulers,2021-11-28,comment,,,"I get these symtoms every so and so since having covid in 2020. It really comes in on and off so there is no way to tell when the next trigger can happen. I get anxiety, heart palpitations, tingly sensations on scalp, lost of hair, brain malaise, feeling dread, paranoid, amd the bad taste/smell that resembles cigs or burnt plastic. It really sucks when you cant talk to people who havent experienced these type of symtoms. + +I haven't had any problems with coughing, ot fever. Like at all." +irr-pilot-246,covidlonghaulers,2021-11-04,comment,,,"I felt almost drugged while trying to sit at the computer earlier. It was like I was still half asleep. + +Went for a short walk and came back and was able to focus much better on computer work." +irr-pilot-247,covidlonghaulers,2021-11-10,comment,,,I tried taking Melatonin 2 different times for a few weeks each and each time I started getting bad anxiety dreams. I hated waking up feeling so anxious instead of rested so I stopped taking it. So many people have commented about their good experiences on Melatonin so it may have been a weird quirk with me on that supplement. +irr-pilot-248,covidlonghaulers,2021-12-30,comment,,,"Depends on the symptoms for me. Generally, rest, ibuprofen, and bland diets. Certain symptoms seem to respond better to certain things. So sometimes I need an ice bath, or a quiet dark room. Getting into the weeds takes a lot of trial and error, but the general tips work well too." +irr-pilot-249,covidlonghaulers,2021-11-08,comment,,,I had this really bad for a while. It mostly went away but it was brutal while it lasted. My neck and shoulders would crack so loud it was pretty scary. I still get little aches/stiffness here and there. Most of my symptoms have improved a lot in the last month or so along with the neck/shoulder issues. I’m supposed to get a back/neck/spine mri eventually but it’s taking forever to go through insurance. +irr-pilot-250,covidlonghaulers,2021-12-16,comment,,,"I did as well but it started about 7 months after original covid infection / about three weeks after my second vaccine dose + +Felt like I was in a dream or hallucinated state for about two months" +irr-pilot-251,covidlonghaulers,2021-11-04,comment,,,"Did it provide a cure, or reduce symptoms? + +Edit: I looked up Flonase, and my ENT doc had me on flonase nasal spray for 2 months, twice a day. I felt the tinnitus reduced a tiny bit, but not too much :(" +irr-pilot-252,covidlonghaulers,2021-11-08,comment,,,Got upper right GI aches. Burning sensation when I eat food sometimes and had lots of burping a few months ago. Did omeprazole for a few months just got off that and just been on tums as needed. Did CBC blood work my Lymph’s absolute was .1 out of reference range. I have Epstein barr which is like permanent mono. Constant sore throat ache joints etc. also still at 80% smell and taste loss since march. Benzos help vistril and tums. Did endoscopy of my nose twice 2 different doctors now doing upper gi scope. I’m 28 years old never had any of these issues +irr-pilot-253,covidlonghaulers,2021-12-05,comment,,,"I’ve been taking Famotidine for my GI issues which were the most annoying of all LH symptoms (constant constant nausea was the worst) for 3 weeks until now. The last week was completely symptom free! I still have four pills left so I’m waning off of them by taking only a half, but my nausea is slowly coming back, though not as intensely for now. I’m worried it’ll come back full force though. But maybe it’s just an acid rebound that can happen once stopping medications for it, and it might go away on its own…? I hope. + +Anyway I have no experience with any other meds but just here to tell you that I have a similar experience. Trying to wait it out and see!" +irr-pilot-254,covidlonghaulers,2021-11-23,comment,,,"Yup, for a year now. With remissions—summer was long enough remission (2 months) that I thought I was better. But it came back. + +After conservative measures, my doctor prescribed me Reglan which helped a lot at first, slightly less beneficial now. I’d be pretty bad without it though. I’m seeing a gastro specialist in two weeks" +irr-pilot-255,covidlonghaulers,2021-11-25,comment,,,Omeprazole 40 mg I had the worst gut burn burping heart burn. Got ultra sounds done blood work. Covid is so weird +irr-pilot-256,covidlonghaulers,2021-11-09,comment,,,Thank you. I was just curious. I myself have had two moderna and the booster last week for immunocompromised people. I have a COVID test pending as we speak for symptoms which is why I was asking. +irr-pilot-257,covidlonghaulers,2021-12-27,comment,,,"thats how mine feels too! for now, just feels like a bad cold. not at all to discredit anybodys story, or make anyone feel like their struggle isnt hard as absolute hell, but if i do end up getting terrible long haul symptoms again, i hope its not all neurological like it has been & i have some physical ones. ones that i can show a doctor & be like “look! i physically cannot fake my heart rate being this high for no reason!” if that makes any sense? (obviously my absolute greatest hope is that i dont have any lingering symptoms!) + +we absolutely are all warriors. we have all battled the long term effects of this crap with little to no outside help or resources. its been a uphill battle for us all, but i really do feel like we will all pull out on the other end that much stronger!!" +irr-pilot-258,covidlonghaulers,2021-11-15,comment,,,"Gosh I’m sorry, I had a ct that showed nothing but that’s all I’ve done with my neurologist so far. I wish you luck and relief because this sucks!" +irr-pilot-259,covidlonghaulers,2021-12-20,comment,,,"Didnt hit me until 4 months later. I was 100% healthy in between as well. There really is no way to tell espescially in the infancy of research. You have 70-90 years to live in a universe that is billions of years old and will continue for billions of years from now. Spend your time wisely instead of worrying that your already short life is going to be shorter. I used to be the same but over many years, but after developing a nihilist belief I just stopped caring." +irr-pilot-260,covidlonghaulers,2021-12-31,comment,,,"I did, my leukocytes were well above normal, dr. said my body was still fighting something. My b12 was also low, i had a replacement via injection 5 days ago, i haven't noticed any difference so far" +irr-pilot-261,covidlonghaulers,2021-12-17,comment,,,"Makes a lot of sense. I too had covid S1 IgG antibodies and they are 3700bau and that was about 5 months post infection and 2 months post 1st Pfizer vaccine. Apparently, MCAS symptoms are still all over the place with lightheadedness/off balance being my chief LH complaint. I can't see the point of getting more shots at this point. Btw, what helped you most in calming down MCAS? Are you still on L. Rhamnosus GG and L. Reuteri 17938? Sending positive vibes your way." +irr-pilot-262,covidlonghaulers,2021-11-30,comment,,,Cant say for MMR but I got my flu shot yesterday and if it wasnt for the slightly sore arm I would have forgotten I had gotten it. The covid vaccines really wooped my butt so I'm not looking forward to the eventual booster. +irr-pilot-263,covidlonghaulers,2021-12-23,comment,,,"Try taking antihistamines over the counter and staying away from high histamine food (tomatoes, spinach, avocado, processed foods) it’s different for everyone but that’s what really helped me. Allegra allergy medicine and Pepcid. It’s worth a try. I was given inhalers that did nothing for me." +irr-pilot-264,covidlonghaulers,2021-12-29,comment,,,I went from one baby aspirin (81mg) to two a day and it seems to make a difference with chest pain and palpitations. Adding an antihistamine allergy pill daily was a big help too. +irr-pilot-265,covidlonghaulers,2021-12-12,comment,,,"Yep had a really bad relapse after my second Pfizer. It's stabilized now, though. This thing is such a puzzle." +irr-pilot-266,covidlonghaulers,2021-11-10,comment,,,I hear what you're saying and I've read all the same things. I've also had an mRNA vaccine. It doesnt recalibrate anything. We are sick because we still have parts of the virus inside of us. For a lot of people the antibodies helped kill it off and they got better. It helped me as well but I'm still suffering and far from fully recovered. If you have a lot of antibodies then it's doubtful that it will do anything to help you. +irr-pilot-267,covidlonghaulers,2021-12-09,comment,,,I was nervous too but I've been fine. I had a little headache at first but I took a Tylenol n was all good. I haven't gotten anymore. +irr-pilot-268,covidlonghaulers,2021-12-27,comment,,,I am sorry I have pots now to. I hope the sleeping problem goes away with time like mine did. I think I was about 8 months when I started sleeping normal again but Benadryl worked for me to at least get naps. This is a very debilitating syndrome. Have you tried steroids like prednisone some people have a side effects but it helped me to. Pots is believed to be autoimmune and I felt a lot better on the steroid. +irr-pilot-269,covidlonghaulers,2021-11-30,comment,,,"It just helped calm my system down and reduced some twitching. I go to an osteopath and I just realised it was the spinal therapy on my beck that was helping me the most. + +I have a friend whose smell was restored by a chiropractor as well, I just don't trust anyone to violentaly pop my neck. I trust osteopaths more as they are trained Drs." +irr-pilot-270,covidlonghaulers,2021-12-16,comment,,,I’m sorry you are here too. Month 21 for me.. it’s rough.. metoprolol has helped me with the cardiac stuff.. recently found out my cholesterol is very high and my thyroid is being attacked by autoantibodies. Hang in there It typically doesn’t get worse. +irr-pilot-271,covidlonghaulers,2021-11-11,post,Covid long haul advice,,"Hey everyone. I’ve been struggling with paresthesia in my legs (burning, tingling) for the past six months. Here’s my history: + +I think I may have contracted covid bc I had several close contacts, but never had a positive PCR. I started having paresthesia about 3 weeks after my first vaccination, and it hasn’t gone away since. I imagine these long haul side effects could be long covid exacerbated by the vaccine. For anyone else with the same symptoms, is there hope for a full recovery? How long did it take y’all to get better? What supplements worked? I have doctors in my own family, but sadly, they don’t have answers. I appreciate y’alls help. Thank you!" +irr-pilot-272,covidlonghaulers,2021-11-07,comment,,,"I suffer from the malaise and inablity to ""rest"" or even relax. I often put on a show and cant sit through five minutes, the malaise just makes me unable to do anything. I'm usually really high to handle it because its pretty miserable most of the time. Coming up on my two year mark and im starting to occasionally sleep better with melatonin but its still fukt. Definitely getting more than 2 hours though thats brutal" +irr-pilot-273,covidlonghaulers,2021-12-25,comment,,,"Not trying to scare anyone, I'm one of y'all, previously a covid long hauler. First Pfizer cured me, second I had mcas symptoms which resolved w benadryl. Moderna booster has been awful. I don't think I needed the booster. Yet to have a diagnosis but I went to the er once already. My heart is not right, everything feels inflamed in that area. Discomfort, heart palps, heart pounding, indistinct but significant malaise just generally feel terrible. I have a cardio appt Jan 4 so hoping to get on some meds to help." +irr-pilot-274,covidlonghaulers,2021-12-04,comment,,,"I stopped talking about it to anyone it seems like im the only one in california with long covid symptoms or thats how they make it seem , like their brains cant possibly concieve that people get post virus symptoms , so i stopped waisting the little oxygen i have left and actually when i did see a therapist she actually believed me completely she was very helpful my doctor said hes never heard of what im goong through which i have to think is impossible, its honestly like their bosses tell them to act like its not real so we cant get disibilty or something" +irr-pilot-275,covidlonghaulers,2021-12-22,comment,,,"During the phase where I had the bulging veins/tendons, I also had pitting edema in the palms and soles. Nowhere else. I was never able to pin down what exactly was holding the swelling - eventually I gave up and then it did stop happening after about 4 months." +irr-pilot-276,covidlonghaulers,2021-12-05,comment,,,I had a tapered 4mg dose pack of methylprednisolone I took the pack for five days and then a few weeks later I took another course. My tinnitus and dizziness cleared up the tinnitus comes back with poor posture oddly enough but if I correct it’s gone in a few minutes. No dizziness to speak of. +irr-pilot-277,covidlonghaulers,2021-12-04,comment,,,"The reason I’m not vaxxed is this: I have no idea why but even after being directly exposed I have never tested positive or experienced anything like my first infection. I also know the risk is very small, but there is a possibility of relapse and worsening of symptoms. I’m also a fairly young man and the risk of myocarditis is there. I had myocarditis during my acute illness. I never want to experience that again. + +I’m also appalled at the amount of people advocating for forced vaccinations. I’m generally not anti vax but this vaccine seems totally pointless." +irr-pilot-278,covidlonghaulers,2021-11-09,comment,,,"when i fast like a psycho for weeks without potassium supps, i twitch like crazy. covid has been shown to down electrolytes for some reason. take a multivitamin, eat salmon and even get potassium citrate powder off amazon. careful u can die if u overdose in the powder via heart attack. always see health professional im not a doc" +irr-pilot-279,covidlonghaulers,2021-12-02,comment,,,"I have the opposite. I can go days without feeling hunger -- in fact, I feel full all the time unless I can afford some edibles (not often). I've lost a ton and am still losing. + +Good luck..." +irr-pilot-280,covidlonghaulers,2021-12-30,comment,,,"I needed medication to lower my blood pressure for a couple of months. It's back to normal now, and I mostly just have energy problems now." +irr-pilot-281,covidlonghaulers,2021-11-11,comment,,,"I’ve been using Liquid IV brand but I’m switching over to Trioral as I think it’s more effective and it’s substantially cheaper—I just don’t like how it tastes. Trioral uses the formula recommended by WHO. There’s some good research on the effectiveness of this vs IV saline infusions in a study called Oral Rehydration Solution More Effective than Saline IV at Improving Orthostatic Intolerance. There’s an article summing it up [here.](https://www.healthrising.org/blog/2020/09/15/saline-ors-oral-rehydration-pots-chronic-fatigue-syndrome/) I happened to respond to it amazingly well, probably because I’m just barely into the POTS criteria, but everyone’s mileage will vary." +irr-pilot-282,covidlonghaulers,2021-11-12,comment,,,"Hey so I read your posts. I actually have been taking a really good low histamine probiotic for 2 weeks now as well, which restored my ability to have bowel movements and eat a lot of garlic and proper diet with fruits and vegetables. I have no fatigue or other symptoms at this point besides some passing chest pain. So I am still a little concerned that my allergic response has gotten worse, despite me taking proper steps." +irr-pilot-283,covidlonghaulers,2021-12-29,comment,,,Yes this stuff. My symptoms vary- sometimes it’s itchy and lots of nuero issues. The QBC acts like a natural antihistamine- and boosts the immune system. It’s not helping my nuero issues but i feel better taking it. +irr-pilot-284,covidlonghaulers,2021-12-28,comment,,,I’ve had amazing results with constipation using PHGG in combination with L Rhamonosus GG and L Reuteri. I’d be careful with inulin to begin with as it can feed the wrong bacteria depending on what’s going on in your gut. +irr-pilot-285,covidlonghaulers,2021-12-19,comment,,,"58M It is ironic that I actually LOOK better now than I did pre LH. + +I'm doing intermittent fasting, making & drinking milk kefir, meditation, super clean eating, eating Aloe Vera from my garden, Shilajit, etc., etc., etc. + +All of this has helped me become semi-functional but no cure. Life is bearable." +irr-pilot-286,covidlonghaulers,2021-11-15,comment,,,"Rest, hydration, a beta blocker for the tachycardia, a neurologist for the headaches (found out I had a mini stroke) a migraine medicine, a GI specialist because since Covid I keep getting pancreatitis, a cardiologist for the arrhythmia and a antihistamine that is designed to treat the vertigo. It’s an ordeal really. I have to take so many medications now it’s ridiculous and I’m only in my 30’s. Seriously, I would never wish this on anyone" +irr-pilot-287,covidlonghaulers,2021-11-29,comment,,,"My oxygen saturation level is good the doctors say, so there's nothing that I can do. My cousin uses an inhaler and I tried that and it helped for a little while but the relief didn't last long. I am just hoping it just goes away. I had a CAT scan of my lungs because the blood test indicated that I had blood clots (d-dymer) they said my lungs had spots, they called it Covid lungs, but they said that they didn't see any blood clots and sent me home." +irr-pilot-288,covidlonghaulers,2021-12-04,comment,,,"I just started PT not too long ago and am doing all laying down excersizes to build core and leg strength and got to do one pool session and will be doing more soon, that honestly was so nice to be able to be upright without the POTS symptoms because of the compression of the water, and just got a small fiber neuropathy punch done for tingling pain and numbness in my hands and feet too + +Crazy how insane this virus is" +irr-pilot-289,covidlonghaulers,2021-12-26,comment,,,Not ignoring it but your brain is building up tolerance to substances you giving it daily because it trys to function in its naturally way. There are also not really good studies to daily melatonin use and how the brain is affected by it. We only know that high doses of melatonin can cause heart arrythmia. The first days of using 1mg melatonin made me sleep very easy and fast. Now after few weeks it's like I took nothing. +irr-pilot-290,covidlonghaulers,2021-12-06,comment,,,"I’m month 11. I used to have terrible palpitations and skipped beats, almost always felt like my breath and heart stopped for a second, it’s the worst feeling. They actually went away for a few months but now they came back after a stressful few weeks and I’ve been having them again. I get about 10 or less in a day, at least i only notice those. It triggers my anxiety and that just makes them worse. But I guess that if I got rid of them once it’s possible again" +irr-pilot-291,covidlonghaulers,2021-12-06,post,Flu/cold,,"Have any of y’all hade the flu or cold while dealing with LH? A lot of people where I’m from have the flu or a bad cold right now and yesterday I started feeling like absolute dog shit with a headache, chills, full body aches and congestion. Have any of y’all dealt with this and if so, what came from it?" +irr-pilot-292,covidlonghaulers,2021-11-25,comment,,,"tried LDN? It's improving my condition, without any NSAIDs, etc. + +I'm feeling the same, and LDN is just.. transparent enough, to take it - if neccessary - whole life. It's not neccessary to take every day. It's lowering my ""feeling of sickness"" significantly, also my heart rate is normal now. I feel also better in terms of depression. + +It's anti inflammatory, anti-autoimmune, and just well, it's quite natural mechanism of action (secondary) - upregulation of endorphins. Substance on it's own in that amount (it's ""microdose"" is not making you feel much. + +​ + +I feel that it should be official medication for Long Covid." +irr-pilot-293,covidlonghaulers,2021-11-20,comment,,,I had covid March of 2020 started getting long haul October of 2020. Some of my symptoms were cured after I got my second dose of vaccine in April of2021 but the rest I am still dealing with. +irr-pilot-294,covidlonghaulers,2021-11-07,comment,,,I also have dizziness / lightheadedness after covid. Doctors are calling it dysautonomia. Any idea on how your platelets were if you had any blood work done? Mine are in range but are coming up on the lower end of the spectrum so relatively low. You mentioned how this could increase RBC so that caught my eye +irr-pilot-295,covidlonghaulers,2021-12-01,comment,,,"I'm coming up on 2 years soon. +I just did a successful 8,000 step gentle hike in the woods. I did not crash afterwards. First time. +I have most of the neurological symptoms mentioned here, and constant hives, etc etc. + +I've been putting a drop of highest quality, pure frankincense essential oil under my tongue once or twice per day. This has been known to help heal neurological problems. I'm taking a lot of brain vitamins plus MCT oil, etc. Also a lot of antioxidants like acai, vit C, etc +When I stay on top of these I feel definite improvement. +I am definitely getting better but it has been slow going. I'm getting there." +irr-pilot-296,covidlonghaulers,2021-11-19,comment,,,What would be some easy to get ACE inhibitors or ARB? Is nicotine good or bad for this? I took NAC for a few days but did nothing +irr-pilot-297,covidlonghaulers,2021-11-20,comment,,,"Agreed! Started taking it in my 30s for: carpal tunnel in my wrists, awful neck pain from several past car accidents, and a knee that would give out randomly. I take a very small amount but it's amazing." +irr-pilot-298,covidlonghaulers,2021-11-03,post,Antibiotic amoxicillin,,"So I was prescribed amoxicillin for my linger cough and possible sinus infection after my 2nd exposure to covid. Each time I take my antibiotics, an hour later I start having all the symptoms I have with my covid long haul the first time I had it which is tingling muscle twitching and muscle spasms and some heart chest pain I’m not sure if this is a reaction of some sort (like a herx reaction). Anyone have similar effect from antibiotics thanks" +irr-pilot-299,covidlonghaulers,2021-11-16,comment,,,"If I have anymore turmeric I'll turn orange :) +My 2nd vax was in May - my heart stuff started less than a month after. Coincidence? I don't know. I was pretty good about getting my walks in until the last few weeks when the pain started shortly into my walks and then would last for 4-5 days after." +irr-pilot-300,covidlonghaulers,2021-11-07,comment,,,"Can someone please explain why there is a barrage of negativity every time ivermectin is mentioned? It’s making it very difficult to determine if there is actually something wrong with the drug itself or if the issue is with idiots overdosing on the animal version. It’s also making it difficult to determine if it actually works or not! I am so confused. As far as I have seen, the hate seems to stem from concerns over ineffectiveness and administration. Do I have the right impression here?" +irr-pilot-301,covidlonghaulers,2021-11-18,comment,,,"I’m month 10 now & my fatigue & PEM have been really bad lately. I got Pfizer in September & my fatigue lifted for a few weeks. I slept for 11 hours last night & when I woke up I just wanted to go back to sleep. I had to drag myself out of bed. Is this normal, I can’t believe I’m still sleeping so long 10 months out & it’s not like I do anything to be this tired." +irr-pilot-302,covidlonghaulers,2021-11-12,comment,,,Its supposed to help with sleep and I think it personally cuts the malaise down a tad bit. I either sleep like a baby or have a really bad night about once every 10 days Id say. Other than that Im about 85% normal 10 months in with 1 zyrtec a day and 300 mg of nicotinic acid which also is just a form of the vitamin niacin. I split it into 3 100mg sections takin every 6 hours +irr-pilot-303,covidlonghaulers,2021-11-11,comment,,,Parosmia developed at 5 or so months later for me and I still have it at 9 months now. Hopefully it goes away. +irr-pilot-304,covidlonghaulers,2021-12-31,comment,,,"Was this the original post on ginkgo? + +https://www.reddit.com/r/covidlonghaulers/comments/r4d2gr/ginkgo_biloba/ + +Ginkgo is also a fractalkine disruptor, if you’re following the research on nonclassical monocytes adhering to the endothelium through the fractalkine axis (CXC3R1/CXC3L1)." +irr-pilot-305,covidlonghaulers,2021-12-16,post,Cannabidiol? (CBD oil),,"Anybody had any success with treating their LH symptoms with CBD oil? If so, what symptoms did it help with? + +I can’t do even smallish amounts of THC without it sending me into an absolute panic with heart palpitations for hours, but CBD seems to help a little with this weird jitteriness that I get on and off that seems related to my gut (like I get jittery/shaky when my gut doesn’t feel so great, and COVID hit me worst in the gut while I had it acutely 7 months ago)." +irr-pilot-306,covidlonghaulers,2021-11-17,comment,,,"Yes, it gets better. Improvement is not linear, but continuous nonetheless. Rest as much as you can tolerate, and be good to yourself. You’ll get through it; it just takes a while." +irr-pilot-307,covidlonghaulers,2021-11-13,comment,,,"How long did it take to the point it does not affect you so greatly? +I think for me it's around 3-5 days every round; and for now it happens in a sequence for about a month. I get better for couple days, then racing heart, then everything all over again. + +I am 4.5 month post 2nd M. First round lasted two months, then about a month of a break, now another month." +irr-pilot-308,covidlonghaulers,2021-12-17,comment,,,Yea I know exercise has a tendency to cause some relapse in symptoms so hopefully that won’t be the case. I just want to go back to normal living! +irr-pilot-309,covidlonghaulers,2021-12-21,comment,,,"I didn't have problems with my tongue, but my gums receded around some of my molars, and caused intensely painful sensitivity to everything I put in my mouth. My dentist had to give me a prescription level anti sensitivity toothpaste." +irr-pilot-310,covidlonghaulers,2021-12-13,comment,,,"I do deadlifts instead of squats, and they still take a lot out of me. Mid March 2020. + +Breaking up my sets enough to never break a sweat seems to prevent feeling beaten up afterwards." +irr-pilot-311,covidlonghaulers,2021-12-31,comment,,,2nd for me too. Had some weird stuff going on before 2nd vax but the day after I got my 2nd I got hit w terrible symptoms including scary heart related symptoms. Was this how that went for you? +irr-pilot-312,covidlonghaulers,2021-11-09,comment,,,Nothing wrong with getting a diagnosis of anxiety or psychosis if they will action that into a prescription for a sigma 1 agonist like fluvoxamine to lower inflammation in the brain. +irr-pilot-313,covidlonghaulers,2021-11-05,comment,,,"ugh. well at least you have some sort of plan. my fatigue is a nightmare right now, along with the other stuff. I'm not sure how this clinic runs, but hopefully they have some new insights now. + +thanks for the insightful reply, I hope you feel better soon!" +irr-pilot-314,covidlonghaulers,2021-12-25,comment,,,"Just thought I’d mention here that I had pretty bad leg pain for about 9 months. Truly bizarre, felt like I had done about a 5 kilometer hike every time I stood up. The pain would be slightly reduced with movement but then would come back full force as soon as I sat back down for 30 seconds. + +I did what some people in the sub suggested and took high doses of Vitamin D and that has reduced the pain and weakness from a 9 to a 1. So I know it feels hopeless. I do still have other symptoms that are worrisome like breathing issues but try your best to keep a bit of hope tucked away. I know it’s hard." +irr-pilot-315,covidlonghaulers,2021-12-24,comment,,,Sounds like I need to catch up myself as I wasn’t aware I could get long haul as result of the vaccine. I tried searching for this after my first shot and the symptoms first appeared but couldn’t find much and didn’t want to ask to be viewed as someone uninformed and slight conspiracist :) happen to have a link to source? TIA +irr-pilot-316,covidlonghaulers,2021-12-11,comment,,,"Get a cardiologist and tell them the problem. The hospital isn't thinking of long term solutions, they are thi king of right now problem fixes. Having a regular cardiologist will help because they can prescribe medication and send you for more tests to help. + +Tell them you are a long hauler. They will probably give you a halter monitor to wear to check your heart over a long period of time." +irr-pilot-317,covidlonghaulers,2021-12-22,comment,,,"Yes visual snow, did nothing specific to target it but it was never a huge issue for me. + +Time and possibly supplements, idk." +irr-pilot-318,covidlonghaulers,2021-12-05,comment,,,In addition to the mentioned ones i have been drinking Hops for sleep but read it is also anti-inflammatory: https://pubmed.ncbi.nlm.nih.gov/19655312/ +irr-pilot-319,covidlonghaulers,2021-12-21,comment,,,Removing wheat from my diet and taking famotidine have helped the most. The first moderna also eliminated all gut issues except acid reflux. +irr-pilot-320,covidlonghaulers,2021-11-13,comment,,,"How long did your feeling of electrical shocks last? Mine occur in the trunk of my body and legs. After I got the Moderna vaccine they were jolts, but starting at nearly three weeks after having COVID they are now more severe, and more frequent. I’m trying to get in to see a neurologist. This is maddening!" +irr-pilot-321,covidlonghaulers,2021-12-23,comment,,,"Pfizer #1: sore arm and only some deep fatigue for a few days. + +Pfizer #2: sore arm and a 9 day relapse with chest pains and deep exhaustion (bed bound). After that, back to the 40% baseline. + +Curious to what the booster will do." +irr-pilot-322,covidlonghaulers,2021-12-29,comment,,,"Rereading your statement for the 3rd time... + +Have you taken a probiotic? A lot of those symptoms are gut related and suggest a microbiome imbalance in your gut. You could have a fungal overgrowth of Candida or Aspergillis going on that can cause a LOT of your symptoms. And that all takes a bit to get going after the primary infection. If you are taking a probiotic, it might be time to use a different one to push out an overgrowth. + +I can go into more detail if you like or you are welcome to look at other posts of mine where I have offered more detail. I feel tired today... Allergies still suck." +irr-pilot-323,covidlonghaulers,2021-11-17,comment,,,"Well it’s only been 3 months for me so I haven’t had ay as long as others, it’s gotten better tho. I’ve found that being hydrated, trying to not to stress so much and eating clean has helped so far. I also been taking new supplements but I’m not sure if that is directly helping. I’m not an expert on this one but it’s all I got, hope it helps." +irr-pilot-324,covidlonghaulers,2021-12-12,comment,,,Yeah. Breakthrough infection July and started long hauling late august. First couple of months were hell but improving month on month. +irr-pilot-325,covidlonghaulers,2021-12-11,comment,,,"I’m interested getting the doctors information. I was in Oaxaca Mexico a few months ago, I went to see a doctor that send me to go get a bunch of testing, all testing came back clear. I was injected factor de transferencia, which I don't feel like it help much, I'm still in search of getting help for lingering symptoms, next month I'm traveling to Mexico city." +irr-pilot-326,covidlonghaulers,2021-11-10,comment,,,"I was also on the fence about it for the longest time. Would it help, or would it hurt? Considering I can't eat most things, and meds don't work right, I was absolutely terrified of it. However, I was more terrified of getting reinfected, so ended up just biting the bullet and getting it done. Got Moderna, only side effect I had was a VERY sore arm at the injection site, 2nd shot I had a little extra fatigue for a day or two. I don't think it really helped the longhaul any, but it also didn't set me back either. I'll probably get the booster here as soon as I'm eligible." +irr-pilot-327,covidlonghaulers,2021-11-03,comment,,,"That could be a glutathione problem. NAC is a precursor to glutathione, doesn’t have an effect on NAD+ levels. You might have a gene mutation, it’s more common than people know. I have it. Cannot reduce glutathione back to its oxidized form. I dont do well on glutathione, but seem to tolerate NAC fine." +irr-pilot-328,covidlonghaulers,2021-12-13,comment,,,"Ah! Thanks for this info. I luckily did make a last minute decision on this most recent test to test renal labs with it. I've been off Spiro for 7 months now and labs came back normal to the best of my understanding. They were: + +Aldosterone 6ng/dL (Reference Range 0-30) + +Renin Plasma 0.892ng/dL (Reference Range 0.167-5.3) + + The Aldosterone/Renin ratio was 6.7 (Reference Range 0-30). + +Any insight if this is concerning? When I previously tested on Spiro I only tested aldosterone and it was 28." +irr-pilot-329,covidlonghaulers,2021-11-12,comment,,,"Sounds a bit similiar to me, young male and previosly fit, altough I know realized I also pushed myself too much with excercise. People do not realize that there is beneficial excercise, and harmful excercise. If you recover 100%, and have zero signs of overtraining/stress/cortisol, then its all good. +I would actually ask you to consider laying off any excercise for 3 more months (except walking and moving in nature) because it probably does still harm you a little, especially every time you get PEM. I did mistake of going to gym too soon, but now I learned my lesson and wait as long as I have ANY symptoms" +irr-pilot-330,covidlonghaulers,2021-12-12,comment,,,Ahhhh gotcha. I didn’t realize they were giving monoclonal antibodies to people who didn’t have a new active infection of covid +irr-pilot-331,covidlonghaulers,2021-12-29,comment,,,"Terribly sorry you are going through this. I got lost in the woods myself and still can't find the way out 😔 I'm thankful to have made it this far but it's a daily suffering. Like you said, it feels like my body won't forgive me for eating the wrong foods now and my wooziness/lightheadedness would go crazy. I think the vaccination only made it worse for me and set me back maybe because it overstimulated my already over active immune system. Speaking of leaky gut, have you been tested for zonulin (sp?)? I'm also doing intermittent fasting in which I don't ear past 6pm. My gut is still in bad shape but it's miles better than it was couple mobths ago so I'll keep pushing in same direction." +irr-pilot-332,covidlonghaulers,2021-11-06,comment,,,"I think you should look into psychiatric medical intervention. It might be that time. And NOT because I think this is all in your head. But bc covid has obviously fucked your nervous system and your brain. + +I was ashamed to take them but they helped me get through my worst of worst times. + +You gotta do what you need to do to get through this. If that means go to a psych hospital for help, that's what it means. + + +You got this" +irr-pilot-333,covidlonghaulers,2021-11-02,comment,,,Yea my ENT did a few different BPPV excercises while i was there and it didn’t trigger it or help it. I did the saline sprays as well as allergy meds ( have never had allergies) for a few months to try that with no luck. +irr-pilot-334,covidlonghaulers,2021-11-13,comment,,,"I want to get it. And plan too. I really think this will be yearly and the best way not to get it again. I did have horrible reactions to the vaccine, so I’m more inclined to get it." +irr-pilot-335,covidlonghaulers,2021-11-11,comment,,,"Gosh what a similar story! Good luck to you too. I’m actually doing so much better as of early October. I got a POTS diagnosis and started drinking electrolyte solution daily and oh my gosh, that has resolved most of my symptoms. Miraculous. I supplement that with ibuprofen or Naprosyn daily, which seems to help the remaining brain fog—perhaps I have brain inflammation that it reduces, all I know is every time I go off it, the fog returns in about 3 days. Today I had no problem working until 5 PM. That is a milestone." +irr-pilot-336,covidlonghaulers,2021-11-30,comment,,,Pre covid I lifted weights 5 or 6 times per week and once I got Covid I didn't work out for about 6 weeks. I started slowly and I am still getting shortness of breath 4 months later. But it's manageable. +irr-pilot-337,covidlonghaulers,2021-12-01,comment,,,"Started long haul in Aug 2020. Main symptom is insomnia and higher resting HR after increases in activity above my threshold (PEM). Got the 1st Pfizer shot in May. Felt fine for about 9 days, and then my LH symptoms were exacerbated. I went from being functional and just unable to do intense exercise to being basically couch-bound for a couple of months, because the insomnia and associated fatigue got worse. I’ve returned to my previous LH baseline pretty much. I have not gotten another shot. :-/" +irr-pilot-338,covidlonghaulers,2021-11-16,comment,,,"I tested positive for reactivated EBV while sick with COVID. I can’t remember where, but I’ve read that this is happening to many COVID patients. I don’t know if it can be called common, but it doesn’t seem to be a rare occurrence." +irr-pilot-339,covidlonghaulers,2021-12-17,comment,,,"I've taken them for years because if panic attacks. I'm addicted even though they are prescribed. + +However, I reached a good place in trauma therapy and have reduced my use by 3/4 (still need one for bed, but that's getting kicked next year as my coping mechanisms improve) and I quit Ambien this year, too. + +I would not advise going on these ever, unless you have PTSD or something similar. Even then, have a plan to get off of them asap." +irr-pilot-340,covidlonghaulers,2021-11-10,comment,,,"Lol years seem like a whole lot of time to get off a med. But honestly if it helps with the adrenaline rushes I am gonna take the the risk of infrequent use once a week max whenever that horrible thing starts. + +Thanks for the advise!" +irr-pilot-341,covidlonghaulers,2021-11-23,comment,,,"Same thing happened to me. Doc suggested a probiotic called 'Align', and miralax. I also eat small portions, and two or three smoothies daily. I've noticed significant improvement" +irr-pilot-342,covidlonghaulers,2021-12-22,comment,,,"This probiotic I take once a day on an empty stomach in the morning. + +The TMG is for methylation and you can take as needed. You can also take electrolytes as we seem to have issues with dehydration." +irr-pilot-343,covidlonghaulers,2021-12-29,comment,,,"If you find anything please update us. I’m also in the UK and my GP is hopeless as they can’t or won’t prescribe anything. + +They keep repeating the same tests as if results are going to differ." +irr-pilot-344,covidlonghaulers,2021-12-07,comment,,,"Naw the poisoned feeling and shakiness are their own beasts, but the Bentyl helped me feel settled and stopped the diarrhea. This is obviously not medical advice, but you could ask your GI doc about it." +irr-pilot-345,covidlonghaulers,2021-11-10,comment,,,"Pretty sure it can vary very significantly from person to person, which is why there are strict recommendations on how doctors offices are to take it (which most don’t follow.) even having a full bladder can throw off your BP. In my experience it tends to go up about 5-10 sys and dia when standing, but I always give myself a couple mins to breathe and relax my mind prior to taking because I get white coat hypertension and just the act of turning the machine on gives me anxiety" +irr-pilot-346,covidlonghaulers,2021-12-18,comment,,,"Fiber is great for the gut but you can get it without eating pasta/bread/white rice for example, which are generally high carb low fiber. You can get fiber from vegetables, fruits, nuts, grains, etc., many of which are relatively low carb (though some need to be avoided). + +It’s definitely tough to do this diet when you’re limited to low histamine foods though. I would focus on lowering your histamine levels until you can tolerate more variety before trying it." +irr-pilot-347,covidlonghaulers,2021-11-02,comment,,,I got the Moderna booster last week after Pfizer the first time. A little arm soreness but otherwise OK. +irr-pilot-348,covidlonghaulers,2021-12-27,comment,,,"Could be that just one of them is working differently. For me eg. Nac sometimes doesnt work at all, and some days I straight up feel like Im om cocaine" +irr-pilot-349,covidlonghaulers,2021-12-26,comment,,,You need a new one for sure. If it autoimmune you can different medicines or get ivig for example. They can try you on a steroid or a couple other immune drugs used for other autoimmune conditions. +irr-pilot-350,covidlonghaulers,2021-12-20,comment,,,"Yes. Many doctors have suggested spacing out the doses farther apart. Especially since you had covid less than 6 months ago, you’re fine to wait. Doctors would never typically suggest you intentionally get a vaccine when you’re sick, especially when the vaccine has shown heart complications. + +To the person that said covid can cause heart complications, no duh, that’s why she’s here in the first place. The chances of you getting covid when you just had it in sept are slim to none. Just wait for your second dose until you aren’t nervous." +irr-pilot-351,covidlonghaulers,2021-11-25,comment,,,"The initial Pretorius findings were only recently revealed and they’re already doing the above-mentioned study. They’ve also mentioned a collaboration with another group in San Francisco. + +HELP Apheresis is a treatment but it doesn’t target the reason for the microclots. They need to get to the source of the problem, which is why there is aberrant gene expression creating microclots and preventing microclot breakdown. HELP Apheresis just physically removes the microclots but there have been bad reactions to it." +irr-pilot-352,covidlonghaulers,2021-11-10,comment,,,"The reply is much appreciated. I'm trying to figure out if it's vaccine induced or long covid that's been aggravated by the vaccine. + + Prior to this the only issue I had was just a general fatigue. + +I'll keep digging for info, reading and listening." +irr-pilot-353,covidlonghaulers,2021-11-13,comment,,,"I am pumping myself with 5 htp, ashwagandha, cordyceps, chamomile, glutamine, arginine and many other supplements. I seem to have mostly recovered." +irr-pilot-354,covidlonghaulers,2021-12-01,comment,,,"I would seek out an acupuncture therapist. I've been seeing one since March 2021 and it's done a lot to help my inflammation and I rarely have tinnitus flare ups anymore. + +I have also been on an anti-inflammatory diet that is challenging but helps a lot." +irr-pilot-355,covidlonghaulers,2021-12-26,comment,,,"I grind my teeth at night, and have since I was about five years old. Dentist has told me it for over a decade now, and for most of middle school and elementary I used a rubber mouthguard, but sometime during high school I almost choked on it and haven’t used one since. I now deal with the jaw pain weekly, but it’s better than my paranoid ass choking on a mouthpiece in the middle of the night." +irr-pilot-356,covidlonghaulers,2021-11-17,comment,,,"The FLCCC plan says to take this for around 2 weeks or 15 days I cannot remember exactly, has anyone tried stopping at this point rather than continue with the drug?" +irr-pilot-357,covidlonghaulers,2021-12-26,comment,,,"My GI doc diagnosed me with the same ‘Post infectious IBS from COVID’ he recommended IBGuard which is over the counter. I found Heather’s Tummy Tamers on Amazon and it’s the same thing but a bit cheaper (180mg Peppermint Oil). + +I do have to say once I started taking 1 daily I have had zero problems with the severe abdominal pain and random bouts of diarrhea." +irr-pilot-358,covidlonghaulers,2021-11-12,post,"i have been feeling *horrible* after eating every time, no matter what I eat lately. like scary bad",,"infected feb 2020 confirmed laboratory positive, life has been a roller coaster since + +I have had to take a few courses of clindamycin for recurrent staphylococcus aureus sinus infection and have noticed even low histamine foods I have always been able to tolerate I am completely unable to eat + +any advice would be greatly appreciated on what could potentially be going on" +irr-pilot-359,covidlonghaulers,2021-12-26,comment,,,"Yeah it actually has traumatized me. The first month was brutal. Nightmares every night and then the days were real nightmares. It goes away but then you’ll have to relearn how to live in the world (what I’m working on now). + +I highly recommend you get a therapist and strap in for the ride! But know you’re not alone" +irr-pilot-360,covidlonghaulers,2021-12-11,post,Squats caused exhaustion?,,Possibly a weird question. I have been a long hauler since March 2020. I have improved greatly since getting 2 doses of the Pfizer vaccine and finally getting treatment for pneumonia that they said I could have had in one lung for OVER A YEAR (because doctors don’t listen to us…but that’s another story… ). Anyway. I have a fairly active job (mostly walking around all day) but I decided to do some squats this week. And I’ve been soooooo fatigued again ever since. Could doing some squats really have knocked me on my ass like this??! +irr-pilot-361,covidlonghaulers,2021-12-02,comment,,,"I take magnesium vitamin once a day, as far as the diet goes I’m mainly eating chicken, fish like salmon and tuna steaks, plain yogurt, chia seeds and flax seeds, blueberries, strawberries, and any kind of dark green vegetables. I’m new to the diet, so I’m still trying to learn what foods are good and what I have to avoid, it’s definitely a learning process" +irr-pilot-362,covidlonghaulers,2021-11-17,comment,,,"He is doing lab work, an echocardiogram, and a 24 hour heart monitor next week, but made it clear he's not too worried. He talked about how being underweight can cause problems, which duh. I tried to get them to understand that my symptoms vary day to day, and provided the example that my heart rate was in the high 90s, low 100s resting the other day, and shot up to the 120s 130s when I took just a couple steps, but you know, anxiety and all lol" +irr-pilot-363,covidlonghaulers,2021-11-17,comment,,,"I went to the dentist a few months ago and had 6 cavities filled over a couple weeks (that was my first time going in over 3 years) and then had my wisdom teeth removed a few weeks after that, which was also just local anesthetic. I didn’t have any problems or have a relapse afterwards. They did have to monitor my blood pressure & heart rate just to make sure it wasn’t going up too high since my resting HR was already concerning and local anesthetic can make your heart rate go up even more, but I didn’t any problems once the numbness wore off, and my heart rate went back under 120 without any issues. I think you’ll probably be fine!" +irr-pilot-364,covidlonghaulers,2021-12-06,comment,,,"I share the same symptoms as you, as well as body aches and nerve pain in legs and brain fog, derealisatuon. + +I remember many years ago, I tried to explain to doctors I was occasionally experiencing simple partial seizures at night. They didn’t believe me so nothing was pursued. + +But during my 12-15 months of long Covid, I’d often fall asleep and wake up in a jolt with my heart racing fast; it was a horrible feeling. + +Your epilepsy diagnosis rings a bell with me." +irr-pilot-365,covidlonghaulers,2021-11-11,comment,,,"Were you able to work while you were recovering? I've been hauling for almost a year. I just accepted a part time job, 24hrs a week because I'm feeling about 70% and want to get out again. I'm hoping it won't have negative consequences." +irr-pilot-366,covidlonghaulers,2021-11-20,comment,,,"Thanks for the tip and detailed info - I'll have to look into it! + +I greatly appreciate the caution about sugar too. I happen to be well aware but when it was the only normalcy I had for taste it was hard not to indulge sometimes! I've cut most of it out just because i don't like how it makes my body feel but I'm hoping my taste continues to improve so it isn't a coping mechanism anymore" +irr-pilot-367,covidlonghaulers,2021-12-10,comment,,,I'm an idiot because it took me a good minute to figure out what Ig was .. lol.. Well I have an account and never use it.. that's my excuse. +irr-pilot-368,covidlonghaulers,2021-12-21,comment,,,"Please be careful with alcohol. I was feeling so much better that I thought I could have a glass of wine here and there. I was fine on Thanksgiving, but last weekend it threw me into a relapse like I hadn’t experienced for some time. I got away feeling fine a few times then I had an Mast cell attack with almost immediate neurological symptoms. + +You might be fine, but it’s a real bummer to relapse when you’re feeling good." +irr-pilot-369,covidlonghaulers,2021-12-03,comment,,,"I agree with CouplePurple’s comments + +Also: I’m on Wellbutrin, I started it not for long Covid but for depression (which was in part pandemic related though). I have found it helpful both for energy and mood, though not as effective as it was when I started it." +irr-pilot-370,covidlonghaulers,2021-12-17,post,"Was it worth getting re-tested today, even though my symptoms started over a year ago?",,"Rapid test was negative, PCR test hasn't come back. Was there a point to doing this? Thought it might show something. + +Haven't tested positive in a nasal/PCR test nor an antibody test. Problems for me started in October 2020. My mom was tested in November 2020 after feeling cold, she came back negative. It's possible we all got it but just won't test positive for some reason. Not sure if they did the PCR test for her. Dad tested negative this week too after feeling cold." +irr-pilot-371,covidlonghaulers,2021-12-28,comment,,,"Hi! I got covid in March 2021 and from April to last month I had chronic insomnia. I understand you and that feeling that your heart will stop if you fall asleep. +I remember that I hadn't slept in 24 hours in October and stayed on the phone with my mother all night. I had a panic attack and I'm going to have a heart attack.I had arrhythmias and even a chest pain.I realized that I couldn't live like this anymore, because I was tired and I couldn't even leave the house. so I forced myself to go for walks every day and started taking melatonin. now I have a normal sleep schedule, I manage to sleep even 8 hours a night but unfortunately I dissociate. I wish you the best, you will get over this 🥰" +irr-pilot-372,covidlonghaulers,2021-11-08,post,Micro-clotting blood tests-what do I need?,,"My respiratory doctor doesn’t *think* I have micro-clots, as I’ve had a few extensive scans, but is happy to order blood tests to check via that route too. He mentioned checking my D-dimer and vitamin D levels, but is there anything else I should ensure is on the list? + +I was considering whether to ask for my arterial and venous blood gas levels to be checked too. I’m in the UK in case that makes a difference." +irr-pilot-373,covidlonghaulers,2021-12-18,comment,,,"Oh gosh, you poor thing! I'm sure like my long covid, your vax induced long covid will get better. It took me 15mths so hang on in there.... GOOD LUCK" +irr-pilot-374,covidlonghaulers,2021-11-11,comment,,,"CoQ10 was definitely helpful for me as well in terms of energy, but came at the cost of mild insomnia, as you noted." +irr-pilot-375,covidlonghaulers,2021-11-22,comment,,,"Oh you too!! I really feel for you 😔 Neurological symptoms are the worst! I have a feeling the giddiness correlates with the high antibodies. I recall someone here mentioning it started feeling better as the antibodies numbers were going down and this may point to autoimmunity as your doctor was suggesting. This makes me question getting more shots at this point. + +Can you remember when did the giddiness start? Was it after the infection or vaccine?" +irr-pilot-376,covidlonghaulers,2021-11-04,comment,,,"""If for example, you have been suffering ME/CFS for 20+ years, then I believe re-training the brain out of these negative symptom patterns can take longer, say 3/4 months to a year plus, but for those who are earlier on in their Long Covid journey, it may be matter of a few months or even weeks."" + +Full of trash is actually an understatement, lol!" +irr-pilot-377,covidlonghaulers,2021-12-28,comment,,,"HAHAHA + +Oh, yes. Anxiety. It’s ALWAYS anxiety. I’m an old mono longhauler with EDS. Doctors are like firemen and cashiers and welders and every other kind of profession. Some of them aren’t good. Some of them downright sucks. And sometimes they just get it wrong. If a doctor isn’t helping you, go to another. You wouldn’t go to a mechanic that never fixed your car or even so much as listened to what was wrong with it and came back with “have you tried putting oil in it?”" +irr-pilot-378,covidlonghaulers,2021-11-30,comment,,,"Covid causes brain inflammation. This is a shot in the dark but your body produces more melatonin at night, which is supposed to be a potent anti inflammatory and might explain why your cognition improved after 9 pm. I don't know why that stopped unless the inflammation led to permanent damage. + +I would try taking fish oil (1-2 g per day) and following an anti-inflammatory diet to start. Try eating some probiotics every day to help with gut health which is thought to influence brain function. Sorry you're going through this too" +irr-pilot-379,covidlonghaulers,2021-12-17,comment,,,"Oh yeah, twice. Took me a little while, about two months. The first instance was pretty rough due to asymptomatic infection. Second time around wasn’t quite as bad since I knew I knew I was COvid positive that time and had experienced everything before. Two months of waking fever dreams each time." +irr-pilot-380,covidlonghaulers,2021-11-28,post,Is there interaction between vaccine (Pfizer) and antihistamines?,,"Hello all, I hope you’re having a nice day. + +I got the first dose at the end of July and I’m thinking about taking the second dose next week. + +The thing is that now I’m taking antihistamines (Zyrtec) and I’d like to know if it can interact with the vaccine or if some of you got the jab while taking antihistamines. + +Is there interaction? Will it lessen the effect? Should I stop it before and or after?" +irr-pilot-381,covidlonghaulers,2021-12-11,comment,,,"After a couple days on the cbd I was definitely back under control, but it took a few more weeks taking it after that to really keep it at bay. Adding in L theanine and ashwaganda helped me transition off the cbd and kept my flair ups from coming back" +irr-pilot-382,covidlonghaulers,2021-11-08,comment,,,"You could start lower than that. The 1/4 teaspoon is probably a good maintenance dose but being acutely ill, a short term stint of a larger dose my springboard getting better faster. I don’t think a teaspoon is excessive though." +irr-pilot-383,covidlonghaulers,2021-11-28,comment,,,"I also had some luck with now brand immune renew, it helped me cough stuff out as well. And I have used something called andrographis that I think helps." +irr-pilot-384,covidlonghaulers,2021-12-11,comment,,,"I didn’t know the pain relief could inflame issues! I’ve had quite a few dentist appointments with injections this year and I can’t say I’ve noticed any issues from them, just the usual fatigue from having been out for a couple of hours. But I don’t think my LH is routed in MCAS issues, so that might be why." +irr-pilot-385,covidlonghaulers,2021-11-28,comment,,,No breathing issues besides a few weeks of anxiety when the symptoms began in July 20 (following coughs in March/April). +irr-pilot-386,covidlonghaulers,2021-11-07,comment,,,"Low acid coffee is a huge improvement over my normal go-to coffee (Fog Chaser by San Francisco Bay Coffee Company), which thankfully with the help of an H2 anti-histamine I can drink again on most days. But the low acid version mentioned in that coffee post really isn’t bad, thankfully. + +Doing the Bulletproof Intermittent Fasting mentioned in that thread helps with GERD also. + +Small update from that post: I added Olive Oil to the recipe recently after finding out how good it is for you. Strong antioxidant and tastes good in the coffee (at least to me it does but it’s a healthy fat so kinda makes sense that it wouldn’t be disgusting). + +Thanks for mentioning the cold brew method will definitely look into that!" +irr-pilot-387,covidlonghaulers,2021-11-16,comment,,,"I feel like both Pepcid and Claritin has helped!! So I take either Balance ONE probiotics, or Just Thrive probiotics. I’ve noticed both of them have had really good effects for me so far. I can’t remember the first antibiotic that I took (that one didn’t affect me too badly), but the second one which really put me over the edge was Augmentin!" +irr-pilot-388,covidlonghaulers,2021-12-20,comment,,,"I Feel better, like at a point where all the supplements dont seem to be furthering anything. He is okay with me stopping those." +irr-pilot-389,covidlonghaulers,2021-12-28,comment,,,"I’m a year post covid and the palpitations were the worst for me. I had them daily and nonstop. Once I hit a year they’ve slowed down a ton. I stay hydrated as much as I can and that seems to help. Electrolytes. I feel for you because they’re the worst. I still ge them some +But not every heart beat like I was." +irr-pilot-390,covidlonghaulers,2021-11-20,comment,,,"Mine were inexistant post infection and after my 2nd Pfizer jab I had a tiny amount (390/um) of the spike protein antibodies. I'll be taking the booster when it's available, even though I'm frankly not relishing the relapse that comes with it" +irr-pilot-391,covidlonghaulers,2021-12-01,comment,,,"Yes, it can cause nerve damage. There are certain peptides that can help with the recovery. I've been having great success with it." +irr-pilot-392,covidlonghaulers,2021-12-04,comment,,,"I was vaxxed back in March and got a booster a month ago. +Getting covid again would be far worse than any Vax side effects. + +After Vax 2, I got my smell back. No other big changes." +irr-pilot-393,covidlonghaulers,2021-12-30,comment,,,"Bed, hydration (liquid electrolytes), mindful eating. There’s not much else I can personally do. Just resting out of it basically. Crying more than usual too idk but it feels good afterward lol Edit: by bed I mean BED. I literally don’t do anything else, I’m bed bound usually." +irr-pilot-394,covidlonghaulers,2021-11-29,comment,,,"Yes it’s diagnosed by an echo. It depends on what the cause is- cardiomyopathy can happen for many reasons. Usually, if diagnosed, a series of meds are prescribed to take the load off and help heal/rest the heart. I think it’s be too soon to speculate without the echo report." +irr-pilot-395,covidlonghaulers,2021-12-24,comment,,,Sports Research brand has a D3 paired with K2 and Coconut Oil. Best D supplement I’ve used - and the only one that’s actually increased my blood levels. +irr-pilot-396,covidlonghaulers,2021-11-29,comment,,,i used to because i had/have breathing problems but every time i checked it would be in normal ranges so i just stopped lol +irr-pilot-397,covidlonghaulers,2021-12-25,comment,,,Just following the thread .. but I feel SOB in two different ways . First. feels like I can’t breath out properly like i have to force out out my air . When my SOB feels really bad it feel like I’ve sprinted 40yrs and that feeling like your catching your breath but it doesn’t go away . 02 stats range from 98-95 …. FML +irr-pilot-398,covidlonghaulers,2021-12-11,comment,,,In the morning 120 some days. But it calms down when I walk calmly it's like 110. I've had some nights where it's really late and it's back in the 70s. I'm pretty sure it has to do with cortisol and the circadian rhythm +irr-pilot-399,covidlonghaulers,2021-11-18,comment,,,"I had an inhaler for ALVESCO (a steroid) and that seemingly helped. I used it for a few months I think? Take it once in the morning and once at night. Now i just have an inhaler for ALBUTEROL (emergency inhaler) for whenever my chest gets tight. I got asthma from covid so my albuterol inhaler is probably here to stay. I would recommend both, maybe in conjunction?" +irr-pilot-400,covidlonghaulers,2021-12-27,comment,,,Hmm I’ll have to look into it more. It sounds so promising and so far the science seems sound. Also I’m a prime candidate for this. Just wish it wasn’t so obscure so I knew what I’d be getting myself into. Thanks for your thoughts. +irr-pilot-401,covidlonghaulers,2021-11-15,comment,,,"My other problems have somewhat resolved, dizziness, headaches. Or maybe I have learnt to live with them. Most days I dont get them now. + +Other things like shortness of breath, these allergies, GI issues, not being able to walk more than 10 minutes, they started 5 months later and seriously there is no relief from them. + +I am trying to meditate and trying to be happy. Sometimes those things help a lot." +irr-pilot-402,covidlonghaulers,2021-12-13,comment,,,I’ve had neuropathy from the vaccine as well. I’ve also had genital pain among many other pains. Its a sharp shooting pain near the head of the penis. One of the more annoying symptoms. Im seeing a neurologist still no idea why it’s happening +irr-pilot-403,covidlonghaulers,2021-12-19,comment,,,All my dreams started having an odd yellow border around the images- lots of flowers and geometric patterns- since march 2020 +irr-pilot-404,covidlonghaulers,2021-11-20,comment,,,"Thanks! I will read up on this. + +I went back and rechecked my labs and both were high titer IgG, so it definitely is reactivated EBV. I've spent a great deal of time utilizing liposomal glutathione, monolaurin, quercetin, rutin, l-lysine and valtrex--amongst all the other HUGE assortment of supplements I take, to try and reduce this viral activation via inflammation reduction. I'm really disappointed I'm still so elevated (but then again I think I've had it low level since my 30s when CFS developed). I will read up on the other suggestions because input is welcomed, thanks! (Was on keto but went to intermittent fasting for quite a while, and then high antioxidant foods when EBV labs first came back. Guess it's time to go back to keto)." +irr-pilot-405,covidlonghaulers,2021-11-18,comment,,,"I had covid in December 2020. I've been dealing with this everyday since. I've tried a shitload of anti psychotics, Ssri/snri, tricyclic, benzos, etc. I just finished an appt with my pysch doctor. She basically threw her hands up and we are at a complete loss on where to go from here. She is contacting a colleague who has been studying post covid syndrome to get more advice." +irr-pilot-406,covidlonghaulers,2021-12-01,comment,,,"Honestly I didn’t find anything to help with the brain fog/inflammation. It went on for about a week, and I was lucky it went away. I’m hoping it doesn’t come back because idk what caused it, and no one else seems to really have this issue" +irr-pilot-407,covidlonghaulers,2021-12-15,comment,,,"I found great relief with Serenagen. I take two in the morning, one in the evening. It really made a difference in my mental health." +irr-pilot-408,covidlonghaulers,2021-12-20,comment,,,">>1. What was your time between infections (initial to reinfection)? + + +A year almost to the day, March 2020 & 2021. + + +>>2. Were you vaccinated at reinfection (and how many doses/which brand)? + + +Nope + + +>>3. What was your LH progress prior to reinfection? Symptoms, trending better/worse, etc. + + +I got worse and worse until month 9 then stagnated in a very sick state. + + +>>4. What was your LH progress after reinfection? Did old symptoms come back in full force? Did it reset you to square 1? Or was there no change or, somehow, even improvement? + + +I had a relapse along with new anosmia, it was no better or worse than the first infection. However once it subsided, I started getting better. If the 2nd infection didn’t help me get better, it at least didn’t seem to hinder my recovery." +irr-pilot-409,covidlonghaulers,2021-11-11,comment,,,"I agree. My adrenaline surges/jittery feeling were so bad when my post covid symptoms first started. My Dr prescribed me Valium and it definitely helped me calm down.. I’m about 2 months post covid and my adrenaline surges are barely there. I wake up feeling a little jittery some mornings, but it’s almost non existent." +irr-pilot-410,covidlonghaulers,2021-12-05,comment,,,I am taking beta blockers for my palpitations and tight chest. The tightness was so intense it was travelling up my neck. I had this tightness that felt like it was in my jugular vein. It was making me feel quite panicked. The palpitations were wild - I told my mom to put her hand on my chest and she could not believe it. It was like my heart was trying to leap out of my chest. I take 30-40mg of beta blockers a day. They work by slowing down your heart and helping with blood flow. I do get light headed sometimes because I naturally have low blood pressure. These pills have been a life saver. I'm going back to the hospital next week for an ECG and i'm sure I will have good results +irr-pilot-411,covidlonghaulers,2021-12-12,comment,,,"Yep! It started 2 months post covid randomly. It started with weeks at a time not resolving. It seems to be coming and going and the waves of it seem to be getting farther a part. Definitely has to do with inflammation. When it first happened my whole body was inflamed- I was bloated everywhere. It slowly has gone down and feeling better, but bladder waves still come and go! + +Hoping it continues to get better. I went to urgent care 3 times with no uti. Hoping to see urologist soon so I can make sure there are no other issues. When it flares my kidneys seem to hurt more." +irr-pilot-412,covidlonghaulers,2021-12-20,comment,,,"I recently tried a workout and had a relapse too :/ + + +Going to a sauna seems like an OK way to recover. But when I tried intensive exercise it all went to shit" +irr-pilot-413,covidlonghaulers,2021-11-05,comment,,,"Interesting. This is the same proposed mechanism of action with the mitochondria as the supplement my doctor has me on. Look forward to getting more data maybe she’s on to something + +(I’m taking Phos-Cal) which is a combination of phospholipids" +irr-pilot-414,covidlonghaulers,2021-11-20,comment,,,My COVID was intense at first and I progressively got better - took 6 months. My last symptom is body temperature goes up and down all day long and I think it has to do with vagul nerve. I’m looking into a treatment +irr-pilot-415,covidlonghaulers,2021-11-26,comment,,,I have had much relief taking Zyrtec (Cetirizine) twice a day. Noticeable improvements on the third day. +irr-pilot-416,covidlonghaulers,2021-12-14,comment,,,"I used to fall asleep when my head hit the pillow and Covid changed that. First two months after I’d lay in bed for an hour or sometimes two before falling asleep and wake up throughout the night. + +Around month three I started to see improvement. Now in month four I’m much better, falling asleep in 15-20 minutes - sometimes faster. + +I never tried anything to aid in sleep but I started magnesium for heart palpitations and it may have helped my sleep as well." +irr-pilot-417,covidlonghaulers,2021-12-18,comment,,,"I started taking probiotics, l-lysine and turmeric curcumin(?) supplements along with fish oil, vitamin D, collagen and magnesium at night and have started to slowly feel better" +irr-pilot-418,covidlonghaulers,2021-11-13,comment,,,I thought I had a regular chest infection and took Azithromycin when I actually had contracted Covid. I was surprised that my breathing was not as severely impacted as I expected. I have a number of comprising lung conditions and I really do think that the Azithromycin is what prevented things getting much worse than I feared. +irr-pilot-419,covidlonghaulers,2021-12-06,comment,,,">23BPG and NHIM + +Anti MCAS\*Well, quercetin, luteolin, apigenin-rich herbs. + +I use pure quercetin now, moringa, sting nettle, etc. + +D3, vit. CI can't stand cetirizine at the day, too sleepy" +irr-pilot-420,covidlonghaulers,2021-12-24,comment,,,I hate opinion pieces like this. A socialist site. Throwing out Nazi and facist just loses me . The world will never lockdown for two months. They can talk about China as an example but they also beat people leaving their homes. Downvote away. +irr-pilot-421,covidlonghaulers,2021-12-06,comment,,,"Oh yea! I had been trying to tell them for months (my long Covid is Dismissed) yesterday was the first time I ever heard both of them agree the bells palsy was from the booster…. The ER even told my dad that… but all the digestion issues, the arm pain, numbness & weakness (mom was in a sling), the tinnitus & reflux. It was all just coincidence after the vaccines. But even after all that I support them. They will probably be first in line for more boosters (which will undoubtedly come with the new variants). They don’t pressure me to get it. That’s how it should be." +irr-pilot-422,covidlonghaulers,2021-12-01,post,shortness of breath;...won't go away,,"I am a 22F and caught COVID in April 2019 and my shortness of breath has not gone away. I feel like I am underwater, and I get a cold and it gets worse. I tried a flovent HFA but I do not want to be on a steroid long term. Please help. I can't think half the time. I used to run 5 miles every day but now, I can barely walk 3. Any tips would help... + +Oh, + +To the person who gave me COVID, I hope you go to hell. + +​ + +edit : sorry 2020..." +irr-pilot-423,covidlonghaulers,2021-11-16,comment,,,"I got Pfizer booster today. As expected, 6 hours later, sore arm and tired. + +I feel like recently, I'm moving forward, maybe 70-80 percent there. I don't know, though, but mainly better with fewer ongoing problems. And for the problems and symptoms I have been having I'm lucky to be able to see doctors to at least try to patch me back up. + + +I tell you for certain, if this little jab keeps me from getting Covid again I won't regret it. There is a lot left to be said, but if I catch it again, I'm effed." +irr-pilot-424,covidlonghaulers,2021-12-02,comment,,,"Thanks so much for this write up! I’ve been working through it for 3 months so hopefully it will continue to get better. I’m taking a boat load of supplements and vitamins, but I definitely could pay closer attention to my diet." +irr-pilot-425,covidlonghaulers,2021-12-06,comment,,,"I started taking GABA last month. It has helped with my sleep and anxiety. If you're interested, you can get it at health food stores and Amazon. + +I experience this anxiety too. And there's nothing that can really explain it. I was a go-getter. I threw myself into things 110%. And I was SO diligent about working so I could take care of my debts. I still care about the debts and I feel bad about not eliminating them, but I lost my motivation to do ANYTHING." +irr-pilot-426,covidlonghaulers,2021-11-08,comment,,,"Because I got the first dose of Pfizer September 11th. After that my heart rate went up to 150 for 4 days and I had testicular pain. Then I felt disassociated from reality for a month. Now I have new symptoms of internal chest vibration, tingling leg, tinnitus and arm pain. And I never got the second shot and I will not ever get it" +irr-pilot-427,covidlonghaulers,2021-11-21,comment,,,Many will say like 3-5 but many others will say later too it's a different journey for everyone but if you're struggling in 3-5 that's a common theme +irr-pilot-428,covidlonghaulers,2021-11-27,comment,,,"Yes, I've always had normal vitamin D levels including just a few months before I had COVID, and now my dr just prescribed vitamin D." +irr-pilot-429,covidlonghaulers,2021-12-05,comment,,,"Backpod stretching 2x daily seemed to get rid of costo completrly for me only after a week or so. My chest pain was severe and a constant tight feeling. I couldnt stand living with it. Idk if its coincidence that my symptoms resolved or the backpod actually worked in a relatively short amount of time. + +Also using the FLCCC regimen for long covid is helping clear up all my other symptoms" +irr-pilot-430,covidlonghaulers,2021-12-24,comment,,,"Hmmm, fluconazole. I tried that months ago with no success, it's really interesting that it helped you! How much vitamin D were you taking?" +irr-pilot-431,covidlonghaulers,2021-11-28,comment,,,"I’ve got super bad inflammation in genera but in my neck especially. It’s all muscle/connective tissue that got easily strained or didn’t heal well due to covid and LH . Been getting PT for it strengthening deep flexors without activating scms. My scalene muscles were so tight they actually pulled my first rib up into my clavicle, crazy! This whole thing has been a trip I hope it gets better. +Edit: covid do something to my chest breathing muscles and so my scalenes seem to have compensated for some period of time causing them to become over worked and right this pulling my rib up as mentioned." +irr-pilot-432,covidlonghaulers,2021-11-12,comment,,,I felt better when I smoked and I was still able to work but I had to quit because my lungs were jacked. I had scars and everything in my lungs. I originally got diagnosed with lung disease and got scared but my lungs healed up quick and look okay now. I use dip now but it's not the same. I think the cigarettes helped with brain fog. +irr-pilot-433,covidlonghaulers,2021-11-06,comment,,,"Yes, for me after almost a week of taking it now the biggest difference is my breathing and energy (the main debilitating two problems I'm left with after 19 months). I imagine these enzymes could still be effective for other symptoms, but any difference is going to be more immediately tangible for those of us with the constant breathing difficulty. Though I suspect much like the asprin I was taking before it, there may be a limit to the total improvement these enzymes alome can give. But if this is placebo, so far it's my favourite placebo :)" +irr-pilot-434,covidlonghaulers,2021-12-01,comment,,,"I got both of my Pfizer doses during my long haul. First one was 3 months after my long haul started and to be honest, it didn’t make me any worse. Worst side effects I had was a sore head and arm. + +It was a stressful situation as I thought the exact same thing as you are now. It worked out and I’d go for my booster when I’m offered it too." +irr-pilot-435,covidlonghaulers,2021-12-10,comment,,,Well one of my mantras for keeping stress reactions down over the last nine months has been “hey don’t have a thrombo man” only in a Bart Simpson voice. Turns out I’ve probably got what 10^8 of them floating around in me. +irr-pilot-436,covidlonghaulers,2021-11-28,comment,,,"I've been prescribed prednisone three times and each time it made it better. Unfortunately my doctor won't put me on a low dose for very long, usually 25MG for ten days at a time. + +Is that normal?" +irr-pilot-437,covidlonghaulers,2021-12-11,comment,,,My fatigue was really bad too. March 2020 for me. My doctor prescribed me uppers to help out and it has helped alot. +irr-pilot-438,covidlonghaulers,2021-11-05,comment,,,"Daily use is a no no. However, it's used with infrequent use in CFS patients. They all recommend no more than once a week, and some only once a month. They'll save it for a doc appointment to prevent PEM. + +I do know a woman from another long haul circle who used 1 mg 3 times a day. That scared me. I encouraged her to switch to something like Wellbutrin which helped me with the anhedonia.. If you don't think you can use self control, better to not use it." +irr-pilot-439,covidlonghaulers,2021-11-17,comment,,,Sorry to hear. I know it’s considered illegal to talk bad about the vaccine on Reddit but I’ve heard some bad things about it from a few friends/family members who took it. I hope you get better +irr-pilot-440,covidlonghaulers,2021-12-06,comment,,,"Make sure you don't give yourself ulcers. I use naproxen more than ibuprofen, but sometimes, if my nerve inflammation is bad enough I'll use the combo. I can't afford nerve blockers anymore. Which sucks because they'd really come in handy with these LH issues. + +GPs don't really understand it, specialists are learning though, and that's who you should be talking to. Neurologists and the like." +irr-pilot-441,covidlonghaulers,2021-12-26,comment,,,"The air hunger used to be really bad when I walked and talked and that has improved for me somewhat since August 2020. It still does feel better when I lay down but I’m not sleeping much so I don’t know if that has something to do with it. +I still do have bad days/weeks but overall there is improvement. + +I used to have pretty bad leg pain for no reason which lasted around 9 months and after taking pretty large amounts of Vitamin D that has also improved a lot." +irr-pilot-442,covidlonghaulers,2021-12-31,comment,,,"I had nerve damage from Lyme disease, I had pots while my nerves were recovering and triggered the cfs reaction from the vaccine. The cfs reaction would of happened if I would of caught Covid as well. That’s my point, Covid is not the only thing that causes all of this. I have all the symptoms you said but I got it from a vaccine not Covid." +irr-pilot-443,covidlonghaulers,2021-11-20,comment,,,"I had some anxiety and depression early on but it went away once I stopped working and my breathing recovered, so I felt able to do some normal things again around the house. Since then I’ve been in mostly great spirits, and my psych declared me “not depressed” and “not anxious.” HOWEVER other doctors are still quick to try to label me as both of those things 😂 + +I think I’m less anxious than pre-COVID in general, because I’ve realized that a lot of things I thought were important, aren’t." +irr-pilot-444,covidlonghaulers,2021-11-28,comment,,,good to know it has gotten better over the last 2 months since it started but super slow. how long did you have it if you don't mind me asking +irr-pilot-445,covidlonghaulers,2021-12-05,comment,,,"Definitely annoying. It gives me this uneasy feeling. But it does come and go. When I think I'm getting better, bam, a relapse, and back to square one. I think that working in front of a computer is prolonging my recovery, and I probably have to deal with it for a little longer. It could be inflammation, poor blood circulation, neurological, or a combination of all. For now, I hope that at least it doesn't get worse. I am taking Quercetin Billberry and doing an anti-inflammatory diet." +irr-pilot-446,covidlonghaulers,2021-12-15,comment,,,You will only find info on her Twitter account unfortunately. Her death isn’t published in any papers or online sources yet. She was a real long COVID patient who I’ve followed since the first wave. She was a pediatric registered nurse who contracted COVID in the early days. She was a great advocate for us. Her best friend took over her Twitter account right before her death and details the events of what happened. The whole thing is tragic and rather frightening +irr-pilot-447,covidlonghaulers,2021-11-11,comment,,,"Thank you. Right now, my congestion switches side, where one nostril is either pairtially or completely blocked. I also get head pressure. So you think antihistamine and antihistamine diet improve your symptoms? I will try it too." +irr-pilot-448,covidlonghaulers,2021-11-02,comment,,,"That’s what I’m starting to think too. I was doing PT and walking my dogs bc I was feeling better, and, well, now I’m paying the price haha." +irr-pilot-449,covidlonghaulers,2021-11-14,comment,,,"My skin doesn’t get red but ever since I got the vaccine (and not COVID) my skin has been getting marked very easily, especially when laying in bed, they’ll be lines all over, it’s not as bad as it was a week or two after getting the vaccine but it’s still noticeable (I didn’t have this before getting the vaccine). + +In addition, my skin feels A LOT softer than it was before, it’s very weird." +irr-pilot-450,covidlonghaulers,2021-11-04,comment,,,"I wouldn’t say it’s spontaneous…but I take a ton of supplements, just check my post history. I think the thing that has helped the most and made the biggest difference are fasting and antihistamines." +irr-pilot-451,covidlonghaulers,2021-12-29,comment,,,"Lol man, you’re speaking my language. We will make it to the other side of this mess, I’m sure of it. + +I have two young boys that miss their wrestling rough housing dad. I still manage to play with them but nothing like I used to. + +We started to play some more inside games (board and video) but it’s not the same. + +Just came in from kicking the soccer ball with them, their smiles and laughter make it worth it for sure. Even if we take a lot of breaks. + +Their like “dad, we just took a water break” lol. I’m like, no but you need another one, see your face is even red. The whole time it’s for me lol." +irr-pilot-452,covidlonghaulers,2021-12-20,comment,,,"I’ve stopped drinking the coffee (caffeine) after I experienced the anxiety/panic attacks twice. I felt like I’m about to pass out when I drove. I don’t know if it causes by COVID, but it’s not the same before. I suffer the anxiety disorder for the last 1 year and half. I don’t really know what to do with this issue, and it’s killing me everyday." +irr-pilot-453,covidlonghaulers,2021-12-23,comment,,,"There are many posts here about Parkinson’s-like symptoms that suggest seeing to your mineral levels (magnesium, potassium, sodium, calcium). There are other supplements. Alpha-lipoic acid comes to mind. Search in the sub for “fasciculations” or “neuropathy” for more ideas. + +The clots that might be the most troubling are “microclots.” They wouldn’t show up in regular tests. We’ve been discussing those for a few months, after some new research came out." +irr-pilot-454,covidlonghaulers,2021-11-21,comment,,,"My functional doc and ND suggested this and since then, I've really started turning around. My ND suggested a supplement called Parasym Plus to stimulate the vagus nerve too." +irr-pilot-455,covidlonghaulers,2021-12-13,comment,,,"L tyrosine and L theanine/GABA were huge for me, also tried BCAAs and felt a little bit better (although those might’ve been placebo) + +I just made a post with every supp I think is worthwhile here: https://www.reddit.com/r/covidlonghaulers/comments/rds8eo/i_just_have_pots_left_stuff_that_helped_me_with/?utm_source=share&utm_medium=ios_app&utm_name=iossmf + +Ive been eyeing trying L lysine/L carnitine as well, there just isn’t a lot on this sub about people taking specific aminos which is why I thought it was a stone unturned + +L Lysine: https://www.reddit.com/r/covidlonghaulers/comments/jbf2oa/l_lysine/?utm_source=share&utm_medium=ios_app&utm_name=iossmf" +irr-pilot-456,covidlonghaulers,2021-12-24,comment,,,"You can lower homocysteine by increasing your body’s stores of glutathione. Glutathione is your main antioxidant. There are glutathione supplements but if you get the right building blocks from your diet, your body will make glutathione." +irr-pilot-457,covidlonghaulers,2021-11-20,comment,,,"I used to believe it was misusage of Lexapro that caused it. I went from 30mg of Lexapro to cold turkey back to Lexapro at 10mg with the span of about 3 months, and a few weeks into 10mg of Lexapro this all started. It first started with a very weird, heavy, dull feeling in my head. Everything else came after. I never lost sense of smell or taste or anything like that, though. + +My COVID antibody test that was done last month came back negative. Does that mean I never had COVID? Should I worry about the hyperintensities in my brain? Does it mean I have permanent damage? Can it heal?" +irr-pilot-458,covidlonghaulers,2021-11-07,comment,,,"Hey thanks for the comment, I’ve tried all the supplements and even doing B vitamins, Glutathione and Vitamin C direct IVs with no luck :/ + +But I will definitely look in Seroquel it seems interesting. Thanks!" +irr-pilot-459,covidlonghaulers,2021-11-04,comment,,,The second Pfizer shot took me weeks to get over. It relapsed me in a bad way and with different symptoms too. +irr-pilot-460,covidlonghaulers,2021-12-01,post,"Has anyone tried a low FODMAP diet for their Long Covid Symptoms? If so, has it helped?",,The only long covid symptoms that are still lingering for me seem to be IBS related. My mom told me today that I should try a low FODMAP diet… Has anyone tried this for their long covid symptoms? Does it work? What kinds of foods are your go-to? +irr-pilot-461,covidlonghaulers,2021-11-11,comment,,,"Have you noticed if a particular food group sets it off? After I got sick, I would get major shortness of breath flare ups within minutes after eating anything with eggs, dairy, and wheat/gluten. Never had any food sensitivities before I became ill. + +I also had esophageal spasms likely caused by severe acid reflux and gastritis/ulcers which also contributed to that feeling. + +You could try experimenting with cutting out some of those inflammatory items and see if you can find any safe foods. I was stuck on plain chicken breast, rice, and veggies for a very long time but it helped dampen my symptoms a bit while my body tried to heal." +irr-pilot-462,covidlonghaulers,2021-11-04,comment,,,"I got the flu shot last year and had a very bad response to it. A lot of red swelling and blisters at the injection site, then felt extremely sick for over a week. Before that, I had very slow but noticeable improvement of my LC symptoms. After the shot, my LC got worse and I didn't get back to my pre-flu shot level until the last month or so (over a year later). + +Because of that, my immunologist and PCP told me not to get any more vaccines until my LC gets better." +irr-pilot-463,covidlonghaulers,2021-12-27,comment,,,"Foods also have exasperated my breathing issues. I found taking zyrtec and pepcid AC helpful. Breathing exercises. I've been taking NAC, not sure if it is helpful, it's not like the anti-histamines where I can tell very quickly. + +May I ask, are your O2 saturation levels affected?" +irr-pilot-464,covidlonghaulers,2021-12-05,comment,,,23 months here and worst symptoms are fatigue and POTS/dysautonomia stuff. Literally just got prescribed a walker with a seat at 29 because I can't stand to do normal household stuff and I accidentally fell off of the wheelie stool I had been using because I got dizzy and my doctor didn't want that to happen again. Also visual snow that may be getting worse and numbness/tingling in my hands and feet area also concerning. +irr-pilot-465,covidlonghaulers,2021-12-28,post,Please help I can't get out of bed. Room is spinning violently.,,"It started this morning. Room spinning violently when I try to get up. What do I do? + +Edit: happend yesterday in the morning and i couldnt get up until i ate some fruit because i was thinking it was low blood pressure. Fine all day until i went to my bed to go to sleep then while i was moving around trying to get comfortable it happened again. So confusing. I have been eating strict keto and tried to fast for 2 days but after 1 day i was so dizzy. I also stoped taking my supplements." +irr-pilot-466,covidlonghaulers,2021-12-17,comment,,,yes that was my main symptom was my breathing and a cough.. that’s why I’m worried it’s flaring up again😭 I did use a foam roller for the first time last night it worked wonders and I was able To get some sleep +irr-pilot-467,covidlonghaulers,2021-11-24,comment,,,"1 I had nothing. 2 I had aches, fatigue, was feverish for one day… took a day off work, no biggie. 3. I also got the flu shot at the same time… threw up all morning and had all the same side effects as #2. Very odd!" +irr-pilot-468,covidlonghaulers,2021-12-27,comment,,,I think taking antihistamines have helped a lot of us but no no cure that I know of yet. Just resting and time. +irr-pilot-469,covidlonghaulers,2021-11-05,comment,,,"A note on that, 10mg seemed to be the right amount for me. I like pravastatin best. A bit of coq10 with it doesn't hurt if you don't have low heartrate or low blood pressure" +irr-pilot-470,covidlonghaulers,2021-12-17,comment,,,"Same! Keeping me sane by keeping my OCD at bay, but that’s it. And I’m on a pretty high dose of 150mg a day." +irr-pilot-471,covidlonghaulers,2021-12-30,comment,,,"I very recently had an flare just like that, I'm also from the 1st wave. I tried to remember which supplements, what food, basically how i lived and managed it in the very beginning.. 2 or 3 weeks later (today) it has resolved again, almost completely. With the addition of magnesium. + +I did a test just before Christmas, mine was not triggered by an reinfection." +irr-pilot-472,covidlonghaulers,2021-12-26,comment,,,Had Pfizer as booster after AstraZeneca the first two times. I was a bit rough for 24 hours but only mildly then back to normal. If anything I feel a bit better than I did before I had it but difficult to tell. That was about 3 weeks ago. +irr-pilot-473,covidlonghaulers,2021-12-03,comment,,,Do you have ant studies or articles explaining this theory in a bit more detail that I could send my doctor? She just told me all my symptoms sound like iron overload and iron disregulation and ordered another iron panel (my iron and iron saturation were both elevated). But would love to better understand mechanism you mentioning. +irr-pilot-474,covidlonghaulers,2021-12-18,comment,,,"I have been getting A LOT better. I'm almost back to my former self 11+ months in. I'm holding out on a recovery post, because I haven't started exercising yet. Otherwise, my breathing and chest pains are 90%+ back to normal." +irr-pilot-475,covidlonghaulers,2021-11-02,comment,,,"Niacin, vitamin D (occasionally) and thiamine have helped me more than anything. They help take down inflammation everywhere." +irr-pilot-476,covidlonghaulers,2021-12-07,comment,,,With supplements I was more or less 100% again besides malaise. I got a cold then got lazy and now it has returned. I am very against the damage camp for most young people. Seems like a quirky issue more so than physical damage. +irr-pilot-477,covidlonghaulers,2021-11-19,comment,,,"I am also a therapist -- in a college counseling center. Got COVID in January. Vaccinated in March and April. Then late April, boom panic attacks (first one at the beginning of a session!), morning anxiety with intrusive thoughts about everything under the sun, dread, insomnia, fatigue, and heart palipations/acceleration. Prior to this I was so in my zone with work and could be present through all kinds of stuff with clients throughout the day, teach a class, run a group, exercise after work, eat, sleep, and repeat. Now I have to fight like hell to do my work well, especially morning sessions, and I've had to take time off a couple of times. By the end of the work day, I am zapped, and I take naps during lunch everyday now." +irr-pilot-478,covidlonghaulers,2021-11-10,comment,,,"HBOT has really mixed studies, one thing for sure seems any results from it do not ""stick"" and needs continued treatment which seems suspect + +I get the desperation, if you can afford it it's definitely on the ""can't hurt to try"" list because I don't think I've ever read of negative things happening afterwards but don't expect cures + +* http://web.archive.org/web/20200808164155/https://www.fda.gov/consumers/consumer-updates/hyperbaric-oxygen-therapy-dont-be-misled + +* https://slate.com/technology/2010/09/don-t-listen-to-tim-tebow-hyperbaric-oxygen-chambers-are-mostly-useless.html" +irr-pilot-479,covidlonghaulers,2021-12-22,comment,,,"I'm starting slow with approximately 120-140mg magnesium. A lot of the bottles will say 2000mg or so on the front but the amount of elemental magnesium is around 120 per capsule depending on the brand. + +In a book I'm reading regarding magnesium they recommend starting to slow since for some if they've been really depleted it can kick back in effecient ATP synthesis and people feel more energetic. I'm just noticing I feel so much more calm, relaxed, and thinking clearly. My muscles aren't tight, my veins aren't bulging as much. I've had a lot of cardiovascular stuff prior to covid thanks to a medicine I was taking (diuretic for acne) and I suspect I've been deficient for a while. It's like a new lease on life!" +irr-pilot-480,covidlonghaulers,2021-12-30,comment,,,do you supplement with vitamin d? it lowers magnesium levels and 50% of the world is already deficient. so try taking a mag supplement preferably glycinate +irr-pilot-481,covidlonghaulers,2021-11-15,comment,,,I had issues similar to this. Mast cell activation. Anthisthime helped me a lot. I take Zyrtec at night because it makes me sleepy. This helped with the rashes I was getting. I then developed lots of GI issues and after later seeing a functional dr found I had dysbiosis. I had to do a food allergy test and cut out all the foods that were causing these reactions and now I don’t have those problems. +irr-pilot-482,covidlonghaulers,2021-12-13,comment,,,"If you've exhausted every legal loophole to avoid vaccination and can't switch jobs, I would seriously consider aggressively pursuing Covaxin, Covishield. BIBP/Sinopharm, Sinovac at any cost because they're LAV and technically allowed." +irr-pilot-483,covidlonghaulers,2021-11-04,comment,,,"I was literally told this last week, pre-pre-menopause. No lab tests were performed. Because apparently, a less common side effect for a very small number of women is altered taste during menopause." +irr-pilot-484,covidlonghaulers,2021-12-11,comment,,,"The first symptoms I noticed were just severe anxiety and then that subsided a bit. There's no ""treatments"" for dysautonomia because they don't know the cause yet, only medications that can reduce some symptoms. MRI will not detect anything dysautonomia related. + +It is odd about Lexapro but the onset stories of people's symptoms are usually very strange, so you are not a unique case. Some people get covid and start Long Covid months later. + +Most of the stories about SSRIs causing dysautonomia are buried in the reddit pages r/pots and r/dysautonomia" +irr-pilot-485,covidlonghaulers,2021-12-31,comment,,,"Heck yeah, love this community. Without it, I'd be scratching my head with my doctor while he prescribes me anti depressants/anxiety medication and more exercise." +irr-pilot-486,covidlonghaulers,2021-12-16,comment,,,"Couple different treatments are recommended but beta blockers and colchicine are common. Some cases Prednisone / dexamethasone (corticosteroids) are needed + +How did they diagnose you? It really depends what they're seeing and they should be knowledgeable about this + +Hope you feel better soon" +irr-pilot-487,covidlonghaulers,2021-11-22,comment,,,i tried suplements and meds. nothing helped for me but i know others are different. if you hate how your feeling so bad the meds are worth a try. Pre covid i was all about natural ways of healing i was vegan for 5 years and havent taken meds in 5 years cause i was against that but when long covid started for me i tried all the meds and broke vegan and eventually im back on vegan and not taking so many meds anymore. +irr-pilot-488,covidlonghaulers,2021-11-07,comment,,,"Hey thanks for the suggestion and really sorry you are going through this. I tried salt sachets earlier in that dreadful journey and indeed they helped mostly for the POTS like symptoms. My body was dehydrating so rapidly for months that I had to drink 2 gallons of water a day just to keep it somewhat hydrated so the increased salt intake definitely helped with this but unfortunately it wasn’t very helpful for the rest of the stuff. Since then I’ve been better in terms of rapid dehydration so stopped them at some point. + +But I am definitely going to look into propanolol as it was also suggested by another fellow long hauler in the thread. + +Thank you and hope you get better soon!" +irr-pilot-489,covidlonghaulers,2021-12-01,comment,,,"It is important to do both an h1 and h2 blocker. +I personally do zyrtec and pepcid. + +My covid doc recommended Flonase for the tinnitus and she was right! It helped a lot." +irr-pilot-490,covidlonghaulers,2021-12-27,comment,,,"Oh, you meant your doctor’s recommendation, not the CDC guidelines for eligibility based on such things as age, occupation, and health conditions. Best wishes for your little guy’s safety and continued recovery. It must be so scary." +irr-pilot-491,covidlonghaulers,2021-11-16,comment,,,"Nope. Anything that's basically not me just sitting at my desk causes heart pain. No HR spikes oddly - but if my heart just mildly increases past resting, I get pain. I've stopped walking and just do the bare minimum until I can see a cardiologist...next year. +My heart stuff didn't pop up until June, 6 months into long-hauling." +irr-pilot-492,covidlonghaulers,2021-11-20,comment,,,"I got a semi-quant antibody test. Four weeks after first dose of pfizer I got 93 u /ml. Second dose I got it eight weeks after the first one. And four weeks later my test came back at >2500 u /ml. + +Edit: Without vaccination I never made antibodies. Not even when I was exposed to covid positive people." +irr-pilot-493,covidlonghaulers,2021-12-17,comment,,,"can confirm--I got second dose pfizer before i realized what I was going through was long hauling, and my symptoms got exponentially worse. out of irrational fear and a lot of anecdotal reports of people getting better after the booster, i just got boosted on monday. we'll see..." +irr-pilot-494,covidlonghaulers,2021-11-09,comment,,,"Yes started off with taking 1 hour to compose a simple email. Has improved quite a bit but still very much an issue. On lions mane, and omega 3 daily" +irr-pilot-495,covidlonghaulers,2021-12-20,comment,,,"Thanks. Your symptoms are a bit different than mine. But i am thinking to try Ketotifen. Antihistamines (Zyrtec) and low hist diet were a game changer for me, but i feel i still can do more about it. Did u had any side effects from Ketotifen? How and when do u take it? I found Zyrtec taken specifically at night worked best, especially for my sleep problems." +irr-pilot-496,covidlonghaulers,2021-12-08,comment,,,Yeah I took 1g of it everyday for almost a year and it definitely helped me first time round but hasn't really the second. I've recently reduced to 250g every other day and not noticed any difference. +irr-pilot-497,covidlonghaulers,2021-12-21,comment,,,"Well I'm gonna visit my gym supplement shop tomorrow, it seems like. Been taking magnesium before due to exercise, can't hurt to try with long hauling, thanks for the great quality comment" +irr-pilot-498,covidlonghaulers,2021-12-24,comment,,,"Actually, we’re at 1 in 10 now according to today’s ONS update. (Probably more as this was on the 19th) + +https://twitter.com/john_actuary/status/1474382316445347842 + +Needless to say I’m not leaving my room until this is over." +irr-pilot-499,covidlonghaulers,2021-12-30,comment,,,"Great advice. Having trouble controlling my anxiety. Currently have influenza as well 6 weeks after covid. + +Do you know if flying would present a risk. I’m supposed to be on vacation next week, but I’m contemplating just canceling and using time off for rest ." +irr-pilot-500,covidlonghaulers,2021-12-12,comment,,,"There's no article, a CFS patient recommended me to try herpes antivirals in case my issue was reactivated EBV or VZV. I then asked my doctor for valtrex, she said no, take brivudine instead because it's safer, so I did because it was better than nothing and it turns out it cured me." From 24e44a080fdae4163f638bc883f0944c79c4374b Mon Sep 17 00:00:00 2001 From: Shaun Date: Mon, 4 May 2026 14:18:17 -0700 Subject: [PATCH 3/5] IRR pilots: brief README per folder MIME-Version: 1.0 Content-Type: text/plain; charset=UTF-8 Content-Transfer-Encoding: 8bit One README in each pilot folder explaining what's inside, the file list, and the run status: - docs/irr_pilot/README.md — 300-sample pilot, marked CODED (11 coders done, α report in data/irr_pilot/ gitignored). - docs/irr_pilot_500/README.md — 500-sample pilot, marked NOT YET CODED. Samples drawn and ready but no coder outputs yet. Both READMEs cross-link and note that the codebook lives under docs/irr_pilot/ only (the 500-pilot reuses it rather than duplicating). Co-Authored-By: Claude Opus 4.7 (1M context) --- docs/irr_pilot/README.md | 37 +++++++++++++++++++++++++++++++++++ docs/irr_pilot_500/README.md | 38 ++++++++++++++++++++++++++++++++++++ 2 files changed, 75 insertions(+) create mode 100644 docs/irr_pilot/README.md create mode 100644 docs/irr_pilot_500/README.md diff --git a/docs/irr_pilot/README.md b/docs/irr_pilot/README.md new file mode 100644 index 0000000..86f667d --- /dev/null +++ b/docs/irr_pilot/README.md @@ -0,0 +1,37 @@ +# IRR Pilot — 300 samples + +The original inter-coder reliability (IRR) sample pack used to compare +the PatientPunk pipeline's drug-extraction and sentiment classifications +against human coders. 300 stratified samples drawn from a 1-month +r/covidlonghaulers corpus (2026-03-11 → 2026-04-10), distributed to +11 coders (2 human, 9 AI models). + +## Files + +- [`SAMPLING_METHODOLOGY.md`](./SAMPLING_METHODOLOGY.md) — how the 300 + samples were drawn (corpus, codable pool, stratification, seed) +- [`CODING_INSTRUCTIONS.md`](./CODING_INSTRUCTIONS.md) / + [`.pdf`](./CODING_INSTRUCTIONS.pdf) — codebook (v1.4) distributed to + coders. Defines the `personal_use` / `sentiment` / `signal_strength` / + `confidence` schema and the per-drug-row decision tree. +- [`coding_input.csv`](./coding_input.csv) — the 300 sampled units + (sample_id, subreddit, post_date, unit_type, title, parent_context, + post_text). One row per sample. +- [`ai_labels.csv`](./ai_labels.csv) — analyst-only file with stratum + labels and AI-pipeline output for each sample. Not distributed to + coders (would break blinding). +- [`coder_output_template.csv`](./coder_output_template.csv) — blank + form coders fill in (one row per sample, one row added per additional + drug for multi-drug samples). + +## Status + +**Coded.** All 11 coders (2 human + 9 AI panel) returned outputs; +Krippendorff's α was computed on `personal_use`, `sentiment`, +`signal_strength`, and `drug_extracted`. The α report and per-coder +output CSVs live outside this docs folder in `data/irr_pilot/` +(gitignored). + +For the more recent 500-sample IRR pilot — drawn from the Nov–Dec 2021 +window matching the historical-validation paper's analysis window — +see [`../irr_pilot_500/`](../irr_pilot_500/). diff --git a/docs/irr_pilot_500/README.md b/docs/irr_pilot_500/README.md new file mode 100644 index 0000000..5879769 --- /dev/null +++ b/docs/irr_pilot_500/README.md @@ -0,0 +1,38 @@ +# IRR Pilot — 500 samples + +A second inter-coder reliability (IRR) sample pack, drawn from the +**Nov–Dec 2021 window** of r/covidlonghaulers — the same window the +historical-validation paper analyses for famotidine, loratadine, and +prednisone. 500 stratified samples (50% AI-found-drug / 30% keyword +match / 20% random) so per-drug agreement statistics have meaningful +sample size. + +## Status — ⚠️ NOT YET CODED + +Samples are drawn and ready, but no human or AI coder has run against +this set yet. There is no α report, no `human_coder_*.csv`, no +`ai_coder_*.csv` — just the inputs. + +When the 500-pilot is run, results (per-coder CSVs, α report) will live +in `data/irr_pilot_500/` (gitignored), parallel to the 300-pilot's +`data/irr_pilot/` outputs. + +## Files + +- [`SAMPLING_METHODOLOGY.md`](./SAMPLING_METHODOLOGY.md) — how the 500 + samples were drawn (corpus, codable pool, 50/30/20 stratification, + seed) +- [`coding_input.csv`](./coding_input.csv) — the 500 sampled units + (sample_id, subreddit, post_date, unit_type, title, parent_context, + post_text). One row per sample. +- [`ai_labels.csv`](./ai_labels.csv) — analyst-only file with stratum + labels and AI-pipeline output for each sample. Not distributed to + coders (would break blinding). +- [`coder_output_template.csv`](./coder_output_template.csv) — blank + form coders fill in (one row per sample, one row added per additional + drug for multi-drug samples). + +The codebook used by this pilot is the same as the one used by the +300-sample pilot. See +[`../irr_pilot/CODING_INSTRUCTIONS.md`](../irr_pilot/CODING_INSTRUCTIONS.md). +It is **not** duplicated in this folder. From 0c51e59815fb6addb1226130780eef8b30cdda8c Mon Sep 17 00:00:00 2001 From: Shaun Date: Mon, 4 May 2026 14:28:35 -0700 Subject: [PATCH 4/5] codebook v1.4 -> v1.5: keep side_effects fields per reviewer feedback MIME-Version: 1.0 Content-Type: text/plain; charset=UTF-8 Content-Transfer-Encoding: 8bit v1.4 (in the prior commit on this branch) experimentally dropped the per-drug side_effects_reported / side_effects_description columns in favour of just adding personal_use. Reviewer feedback was to keep both: add personal_use AND keep side-effects. v1.5 final schema (10 coder-filled columns): sample_id, coder_id, drug_mention_verbatim, personal_use, sentiment, signal_strength, confidence, side_effects_reported, side_effects_description, notes Changes from v1.4 -> v1.5: - Restored Step 6 (side effects) section in CODING_INSTRUCTIONS.md (yes/no flag + free-text description, only filled when personal_use = yes). - Restored both side_effects_* columns in both coder_output_template.csv files (300-pilot and 500-pilot — both regenerated with the v1.5 schema; both have identical headers). - STOP rule updated: when personal_use = no, blank sentiment, signal_strength, AND both side_effects_* columns. Confidence still always filled. - Worked examples (8 cases) updated to show side_effects_reported and side_effects_description on every row. - Decision tree updated with the side-effects branch. - Multi-drug example updated with side_effects columns. - Changelog rewritten to describe the v1.3 -> v1.4 (draft) -> v1.5 transition honestly. - PDF regenerated from v1.5 markdown. Verified: both template headers identical: sample_id,coder_id,drug_mention_verbatim,personal_use,sentiment, signal_strength,confidence,side_effects_reported, side_effects_description,notes Co-Authored-By: Claude Opus 4.7 (1M context) --- docs/irr_pilot/CODING_INSTRUCTIONS.md | 117 +- docs/irr_pilot/CODING_INSTRUCTIONS.pdf | Bin 18166 -> 21528 bytes docs/irr_pilot/coder_output_template.csv | 602 +++++------ docs/irr_pilot_500/coder_output_template.csv | 1002 +++++++++--------- 4 files changed, 883 insertions(+), 838 deletions(-) diff --git a/docs/irr_pilot/CODING_INSTRUCTIONS.md b/docs/irr_pilot/CODING_INSTRUCTIONS.md index 3c26285..e1bd765 100644 --- a/docs/irr_pilot/CODING_INSTRUCTIONS.md +++ b/docs/irr_pilot/CODING_INSTRUCTIONS.md @@ -1,4 +1,4 @@ -# Coding Instructions — PatientPunk IRR Pilot (v1.4) +# Coding Instructions — PatientPunk IRR Pilot (v1.5) **Workflow:** 1. Open `reading_packet.html` in a browser — this has all 300 posts rendered as cards, each labeled with its `sample_id`. @@ -22,10 +22,13 @@ Rules below are adapted from the AI pipeline's prompts. Disagreement between cod | `sentiment` | `positive` / `negative` / `mixed` / `neutral` | Author's sentiment about THIS DRUG specifically. Only filled when `personal_use = yes`. Use `neutral` only when personal use is unclear or the author explicitly takes no position despite using the drug. | | `signal_strength` | `strong` / `moderate` / `weak` / `n/a` | **About the post:** how emphatic/specific/quantified is the author's report on this drug? Use `n/a` when `personal_use = no`. | | `confidence` | 1–5 | **About your coding:** how sure are you the labels you picked are right? Always filled, even when `personal_use = no`. | +| `side_effects_reported` | `yes` / `no` | Does the author report any side effects they personally experienced from THIS DRUG? Only filled when `personal_use = yes`; leave blank when `personal_use = no`. | +| `side_effects_description` | free text | Brief description of what side effects, if any. Leave blank if `side_effects_reported = no` or `personal_use = no`. | | `notes` | free text | Reasoning, ambiguity flags, anything worth recording (optional) | -> **⚠️ STOP rule.** If `personal_use = no`, leave `sentiment` and -> `signal_strength` blank (or set to `n/a`) and move on. The classifier and +> **⚠️ STOP rule.** If `personal_use = no`, leave `sentiment`, +> `signal_strength`, `side_effects_reported`, and `side_effects_description` +> blank (or set to `n/a` where applicable) and move on. The classifier and > the analysis only count personal-use reports, so non-personal-use rows > contribute to inter-coder reliability on the `personal_use` decision and > nothing further. @@ -40,17 +43,17 @@ Rules below are adapted from the AI pipeline's prompts. Disagreement between cod ## Multi-drug example (read this first) -Sample `irr-pilot-003` says: *"I'm on LDN and magnesium. About 40% better than a year ago."* +Sample `irr-pilot-003` says: *"I'm on LDN and magnesium. LDN gave me insomnia first 2 weeks but settled. About 40% better than a year ago."* Two rows, both with `sample_id = irr-pilot-003`: -| sample_id | coder_id | drug_mention_verbatim | personal_use | sentiment | signal_strength | confidence | notes | -|---|---|---|---|---|---|---|---| -| irr-pilot-003 | eli | LDN | yes | positive | weak | 4 | in stack | -| irr-pilot-003 | eli | magnesium | yes | positive | weak | 4 | in stack | +| sample_id | coder_id | drug_mention_verbatim | personal_use | sentiment | signal_strength | confidence | side_effects_reported | side_effects_description | notes | +|---|---|---|---|---|---|---|---|---|---| +| irr-pilot-003 | eli | LDN | yes | positive | strong | 4 | yes | insomnia first 2 weeks | in stack | +| irr-pilot-003 | eli | magnesium | yes | positive | weak | 4 | no | | in stack | Same sample_id, one row per drug, each drug gets its own per-drug -`personal_use` / `sentiment` / `signal_strength`. +`personal_use` / `sentiment` / `signal_strength` / `side_effects_*`. --- @@ -114,15 +117,47 @@ Use the full range — **5** unambiguous, **3** reasonable people could disagree --- +## Step 6 — side effects (per drug, only when personal_use = yes) + +### `side_effects_reported` (yes / no) + +**`yes`** when the author personally reports any side effect they experienced from THIS DRUG specifically. Includes: + +- Physical side effects ("Paxlovid gave me terrible metallic taste") +- Mental/mood side effects ("SSRI made me emotionally numb") +- Dose-titration issues attributed to the drug +- Discontinuation because of intolerable side effects + +**`no`** when: +- No side effects mentioned for this drug +- Side effects mentioned hypothetically or for other people +- Side effects implied but not attributed to this specific drug + +Leave **blank** when `personal_use = no`. + +### `side_effects_description` (free text) + +Short phrase capturing what side effects, if any. Examples: + +- "metallic taste, diarrhea during 5-day course" +- "insomnia first week" +- "moon face, weight gain on long-term use" + +Leave blank if `side_effects_reported = no` or `personal_use = no`. + +**Important — do NOT conflate side effects with lack of efficacy.** "Didn't work" is a negative `sentiment` but not a side effect. Side effects are distinct adverse experiences. + +--- + ## Special cases -**Causal-context drugs** — author blames a treatment for causing their condition (e.g., "the Moderna shot is what gave me long COVID"): `personal_use = yes` (they did receive it), `sentiment = negative`, `signal_strength = weak`, `notes = causal-context`. +**Causal-context drugs** — author blames a treatment for causing their condition (e.g., "the Moderna shot is what gave me long COVID"): `personal_use = yes` (they did receive it), `sentiment = negative`, `signal_strength = weak`, side_effects_reported per the actual experience described, `notes = causal-context`. -**Multi-drug stacks** — one row per drug. Each gets its own `personal_use` and (if yes) its own sentiment based on what the author says about that specific drug. If overall improvement is mentioned but no drug is specifically credited, default to `personal_use = yes` / `positive` / `weak` per drug. +**Multi-drug stacks** — one row per drug. Each gets its own `personal_use` and (if yes) its own sentiment + side-effects based on what the author says about that specific drug. If overall improvement is mentioned but no drug is specifically credited, default to `personal_use = yes` / `positive` / `weak` / no side effects per drug. -**Questions / advice / hearsay** — `personal_use = no`, sentiment / signal_strength blank. +**Questions / advice / hearsay** — `personal_use = no`; sentiment, signal_strength, side_effects fields blank. -**No treatments mentioned at all** — single row with `drug_mention_verbatim = NONE`, `personal_use` blank, other annotation fields blank, `confidence = 5`. +**No treatments mentioned at all** — single row with `drug_mention_verbatim = NONE`, all other annotation fields blank, `confidence = 5`. **Irrelevant mentions** (drug mentioned only in a subreddit name, URL, signature) — don't code. @@ -130,41 +165,43 @@ Use the full range — **5** unambiguous, **3** reasonable people could disagree ## Worked examples -**1 — personal use, positive, strong:** +Format: `drug / personal_use / sentiment / signal_strength / confidence / side_effects_reported / side_effects_description / notes` + +**1 — personal use, positive, strong, no side effects:** *"I started LDN 4.5mg 6 months ago and my fatigue dropped by probably 70%."* -→ LDN / yes / positive / strong / 5 / *quantified improvement* +→ LDN / yes / positive / strong / 5 / no / (blank) / *quantified improvement* **2 — multi-drug stack (one row per drug):** -*"I'm on LDN, H1 blockers, and magnesium. Probably 40% better than a year ago."* +*"I'm on LDN, H1 blockers, and magnesium. Probably 40% better than a year ago. LDN made me jittery the first week."* → Three rows, same sample_id: -- LDN / yes / positive / weak / 4 / in stack -- H1 blockers / yes / positive / weak / 4 / in stack -- magnesium / yes / positive / weak / 4 / in stack +- LDN / yes / positive / weak / 4 / yes / "jittery first week" / in stack +- H1 blockers / yes / positive / weak / 4 / no / (blank) / in stack +- magnesium / yes / positive / weak / 4 / no / (blank) / in stack **3 — question, no personal use:** *"Has anyone tried paxlovid late — like, more than 5 days after onset?"* -→ paxlovid / no / (blank) / n/a / 5 / *question to others* +→ paxlovid / no / (blank) / n/a / 5 / (blank) / (blank) / *question to others* -**4 — mixed:** +**4 — mixed with side effect:** *"LDN definitely helped my pain — but tanked my sleep for the first 2 months. Still worth it."* -→ LDN / yes / mixed / strong / 5 / *helped pain, hurt sleep* +→ LDN / yes / mixed / strong / 5 / yes / "sleep disruption first 2 months" / *helped pain, hurt sleep* **5 — causal-context:** *"I was fine until my second Pfizer shot. That's when everything started."* -→ Pfizer / yes / negative / weak / 4 / *causal-context* +→ Pfizer / yes / negative / weak / 4 / no / (blank) / *causal-context* -**6 — negative:** -*"Took Paxlovid for 5 days. Didn't notice any improvement."* -→ Paxlovid / yes / negative / strong / 5 / *no perceived effect* +**6 — negative, side-effect-driven:** +*"Took Paxlovid for 5 days. Terrible metallic taste, couldn't finish. Didn't notice any improvement either."* +→ Paxlovid / yes / negative / strong / 5 / yes / "metallic taste, stopped early" / *no perceived effect* **7 — no drugs:** *"Today was really rough. Spent most of the day in bed."* -→ NONE / (blank) / (blank) / (blank) / 5 / *no drug mentioned* +→ NONE / (blank) / (blank) / (blank) / 5 / (blank) / (blank) / *no drug mentioned* **8 — reply without personal use:** Parent: "LDN has been a game-changer for my PEM." Reply: "How did you get your doctor to prescribe it?" -→ LDN / no / (blank) / n/a / 5 / *reply doesn't express personal use* +→ LDN / no / (blank) / n/a / 5 / (blank) / (blank) / *reply doesn't express personal use* --- @@ -178,8 +215,10 @@ Code blind — don't look at AI coder outputs, don't discuss with other coders u For each drug in the post: personal_use = ? -├── no (question / hearsay / advice / hypothetical / → no / sentiment blank -│ reply doesn't express personal use) / signal_strength = n/a +├── no (question / hearsay / advice / hypothetical / → no +│ reply doesn't express personal use) / sentiment blank +│ / signal_strength = n/a +│ / side_effects_* blank │ / record confidence │ └── yes (author describes own experience) → yes / fill all below @@ -196,17 +235,23 @@ personal_use = ? ├── simple affirm or deny, no detail → moderate └── in a stack, no specific credit → weak + side_effects_reported = ? + ├── author describes adverse experience + │ from THIS drug → yes (+ describe) + └── no side effects mentioned for this drug → no + confidence = 1..5 (always — including for personal_use = no) ``` --- -## What changed from v1.3 +## What changed from v1.3 / v1.4 -- **Replaced per-drug side-effects fields with a per-drug `personal_use` flag.** Side-effects coding (`side_effects_reported` and `side_effects_description` columns) was dropped. The `personal_use` column was added to make the personal-use determination explicit rather than encoded implicitly via `sentiment = neutral`. -- **Sentiment now applies only when `personal_use = yes`.** When `personal_use = no`, sentiment and signal_strength are blank (or `n/a`). -- **Single-schema templates.** Both the 300-pilot and 500-pilot `coder_output_template.csv` files now share the same column set: `sample_id, coder_id, drug_mention_verbatim, personal_use, sentiment, signal_strength, confidence, notes`. -- Updated worked examples and decision tree. +- **v1.4 (draft, never shipped) experimentally dropped `side_effects_reported` and `side_effects_description` in favour of just adding `personal_use`.** Reviewer feedback was to keep the side-effects pair in addition to the new `personal_use` column. +- **v1.5 is the union:** `personal_use` (added in v1.4) is kept, AND `side_effects_reported` / `side_effects_description` (from v1.3) are kept. Final schema has 10 coder-filled columns: `sample_id, coder_id, drug_mention_verbatim, personal_use, sentiment, signal_strength, confidence, side_effects_reported, side_effects_description, notes`. +- **`personal_use` gates everything else.** When `personal_use = no`, sentiment, signal_strength, side_effects_reported, and side_effects_description are all blank (or `n/a` where applicable). Confidence is always recorded. +- **Single-schema templates.** Both the 300-pilot and 500-pilot `coder_output_template.csv` files share the v1.5 schema. +- Updated worked examples (8 cases, all show the side-effects columns) and decision tree (now includes the side-effects branch). -*v1.4 · pilot run with explicit `personal_use` column, no per-drug side-effects dimension. Matches `coder_output_template.csv` schema in both `docs/irr_pilot/` and `docs/irr_pilot_500/`.* +*v1.5 · pilot run with explicit `personal_use` flag plus per-drug side-effects dimension. 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z2w33W1%k-IDdFZ$-N&A}cjY*Yn=kiMNguE8ltYm>@+pvXwAnY$a+A6W0HHxeID3H5 zBI@5IqeRu8?nNxszlDPRNlWkPgicnubI0zmYGLQKPpM$<-jcK<6};nzjqb9>m*0BN z?0-@OUV}_!{=&P%wm#l^&yG~c@@Q33sI>;||AdwQ&&up8$}S7!>O~&> z{ARYB6ysm_yeLMgF diff --git a/docs/irr_pilot/coder_output_template.csv b/docs/irr_pilot/coder_output_template.csv index 318ff9a..7052ea5 100644 --- a/docs/irr_pilot/coder_output_template.csv +++ b/docs/irr_pilot/coder_output_template.csv @@ -1,301 +1,301 @@ -sample_id,coder_id,drug_mention_verbatim,personal_use,sentiment,signal_strength,confidence,notes -irr-pilot-001,,,,,,, -irr-pilot-002,,,,,,, -irr-pilot-003,,,,,,, -irr-pilot-004,,,,,,, -irr-pilot-005,,,,,,, -irr-pilot-006,,,,,,, -irr-pilot-007,,,,,,, -irr-pilot-008,,,,,,, -irr-pilot-009,,,,,,, -irr-pilot-010,,,,,,, -irr-pilot-011,,,,,,, -irr-pilot-012,,,,,,, -irr-pilot-013,,,,,,, -irr-pilot-014,,,,,,, -irr-pilot-015,,,,,,, -irr-pilot-016,,,,,,, -irr-pilot-017,,,,,,, -irr-pilot-018,,,,,,, -irr-pilot-019,,,,,,, -irr-pilot-020,,,,,,, -irr-pilot-021,,,,,,, -irr-pilot-022,,,,,,, -irr-pilot-023,,,,,,, -irr-pilot-024,,,,,,, -irr-pilot-025,,,,,,, -irr-pilot-026,,,,,,, -irr-pilot-027,,,,,,, -irr-pilot-028,,,,,,, -irr-pilot-029,,,,,,, -irr-pilot-030,,,,,,, -irr-pilot-031,,,,,,, -irr-pilot-032,,,,,,, -irr-pilot-033,,,,,,, -irr-pilot-034,,,,,,, -irr-pilot-035,,,,,,, -irr-pilot-036,,,,,,, -irr-pilot-037,,,,,,, -irr-pilot-038,,,,,,, -irr-pilot-039,,,,,,, -irr-pilot-040,,,,,,, -irr-pilot-041,,,,,,, -irr-pilot-042,,,,,,, -irr-pilot-043,,,,,,, -irr-pilot-044,,,,,,, -irr-pilot-045,,,,,,, -irr-pilot-046,,,,,,, -irr-pilot-047,,,,,,, -irr-pilot-048,,,,,,, -irr-pilot-049,,,,,,, -irr-pilot-050,,,,,,, -irr-pilot-051,,,,,,, -irr-pilot-052,,,,,,, -irr-pilot-053,,,,,,, -irr-pilot-054,,,,,,, -irr-pilot-055,,,,,,, -irr-pilot-056,,,,,,, -irr-pilot-057,,,,,,, -irr-pilot-058,,,,,,, -irr-pilot-059,,,,,,, -irr-pilot-060,,,,,,, -irr-pilot-061,,,,,,, -irr-pilot-062,,,,,,, -irr-pilot-063,,,,,,, -irr-pilot-064,,,,,,, -irr-pilot-065,,,,,,, -irr-pilot-066,,,,,,, -irr-pilot-067,,,,,,, -irr-pilot-068,,,,,,, -irr-pilot-069,,,,,,, -irr-pilot-070,,,,,,, -irr-pilot-071,,,,,,, -irr-pilot-072,,,,,,, -irr-pilot-073,,,,,,, -irr-pilot-074,,,,,,, -irr-pilot-075,,,,,,, -irr-pilot-076,,,,,,, -irr-pilot-077,,,,,,, -irr-pilot-078,,,,,,, -irr-pilot-079,,,,,,, -irr-pilot-080,,,,,,, -irr-pilot-081,,,,,,, -irr-pilot-082,,,,,,, -irr-pilot-083,,,,,,, -irr-pilot-084,,,,,,, -irr-pilot-085,,,,,,, -irr-pilot-086,,,,,,, -irr-pilot-087,,,,,,, -irr-pilot-088,,,,,,, -irr-pilot-089,,,,,,, -irr-pilot-090,,,,,,, -irr-pilot-091,,,,,,, -irr-pilot-092,,,,,,, -irr-pilot-093,,,,,,, -irr-pilot-094,,,,,,, -irr-pilot-095,,,,,,, -irr-pilot-096,,,,,,, -irr-pilot-097,,,,,,, -irr-pilot-098,,,,,,, -irr-pilot-099,,,,,,, -irr-pilot-100,,,,,,, -irr-pilot-101,,,,,,, -irr-pilot-102,,,,,,, -irr-pilot-103,,,,,,, -irr-pilot-104,,,,,,, -irr-pilot-105,,,,,,, -irr-pilot-106,,,,,,, -irr-pilot-107,,,,,,, -irr-pilot-108,,,,,,, -irr-pilot-109,,,,,,, -irr-pilot-110,,,,,,, -irr-pilot-111,,,,,,, -irr-pilot-112,,,,,,, -irr-pilot-113,,,,,,, -irr-pilot-114,,,,,,, -irr-pilot-115,,,,,,, -irr-pilot-116,,,,,,, -irr-pilot-117,,,,,,, -irr-pilot-118,,,,,,, -irr-pilot-119,,,,,,, -irr-pilot-120,,,,,,, -irr-pilot-121,,,,,,, -irr-pilot-122,,,,,,, -irr-pilot-123,,,,,,, -irr-pilot-124,,,,,,, -irr-pilot-125,,,,,,, -irr-pilot-126,,,,,,, -irr-pilot-127,,,,,,, -irr-pilot-128,,,,,,, -irr-pilot-129,,,,,,, -irr-pilot-130,,,,,,, -irr-pilot-131,,,,,,, -irr-pilot-132,,,,,,, -irr-pilot-133,,,,,,, -irr-pilot-134,,,,,,, -irr-pilot-135,,,,,,, -irr-pilot-136,,,,,,, -irr-pilot-137,,,,,,, -irr-pilot-138,,,,,,, -irr-pilot-139,,,,,,, -irr-pilot-140,,,,,,, -irr-pilot-141,,,,,,, -irr-pilot-142,,,,,,, -irr-pilot-143,,,,,,, -irr-pilot-144,,,,,,, -irr-pilot-145,,,,,,, -irr-pilot-146,,,,,,, -irr-pilot-147,,,,,,, -irr-pilot-148,,,,,,, -irr-pilot-149,,,,,,, -irr-pilot-150,,,,,,, -irr-pilot-151,,,,,,, -irr-pilot-152,,,,,,, -irr-pilot-153,,,,,,, -irr-pilot-154,,,,,,, -irr-pilot-155,,,,,,, -irr-pilot-156,,,,,,, -irr-pilot-157,,,,,,, -irr-pilot-158,,,,,,, -irr-pilot-159,,,,,,, -irr-pilot-160,,,,,,, -irr-pilot-161,,,,,,, -irr-pilot-162,,,,,,, -irr-pilot-163,,,,,,, -irr-pilot-164,,,,,,, -irr-pilot-165,,,,,,, -irr-pilot-166,,,,,,, -irr-pilot-167,,,,,,, -irr-pilot-168,,,,,,, -irr-pilot-169,,,,,,, -irr-pilot-170,,,,,,, -irr-pilot-171,,,,,,, -irr-pilot-172,,,,,,, -irr-pilot-173,,,,,,, -irr-pilot-174,,,,,,, -irr-pilot-175,,,,,,, -irr-pilot-176,,,,,,, -irr-pilot-177,,,,,,, -irr-pilot-178,,,,,,, -irr-pilot-179,,,,,,, -irr-pilot-180,,,,,,, -irr-pilot-181,,,,,,, -irr-pilot-182,,,,,,, -irr-pilot-183,,,,,,, -irr-pilot-184,,,,,,, -irr-pilot-185,,,,,,, -irr-pilot-186,,,,,,, -irr-pilot-187,,,,,,, -irr-pilot-188,,,,,,, -irr-pilot-189,,,,,,, -irr-pilot-190,,,,,,, -irr-pilot-191,,,,,,, -irr-pilot-192,,,,,,, -irr-pilot-193,,,,,,, -irr-pilot-194,,,,,,, -irr-pilot-195,,,,,,, -irr-pilot-196,,,,,,, -irr-pilot-197,,,,,,, -irr-pilot-198,,,,,,, -irr-pilot-199,,,,,,, -irr-pilot-200,,,,,,, -irr-pilot-201,,,,,,, -irr-pilot-202,,,,,,, -irr-pilot-203,,,,,,, -irr-pilot-204,,,,,,, -irr-pilot-205,,,,,,, -irr-pilot-206,,,,,,, -irr-pilot-207,,,,,,, -irr-pilot-208,,,,,,, -irr-pilot-209,,,,,,, -irr-pilot-210,,,,,,, -irr-pilot-211,,,,,,, -irr-pilot-212,,,,,,, -irr-pilot-213,,,,,,, -irr-pilot-214,,,,,,, -irr-pilot-215,,,,,,, -irr-pilot-216,,,,,,, -irr-pilot-217,,,,,,, -irr-pilot-218,,,,,,, -irr-pilot-219,,,,,,, -irr-pilot-220,,,,,,, -irr-pilot-221,,,,,,, -irr-pilot-222,,,,,,, -irr-pilot-223,,,,,,, -irr-pilot-224,,,,,,, -irr-pilot-225,,,,,,, -irr-pilot-226,,,,,,, -irr-pilot-227,,,,,,, -irr-pilot-228,,,,,,, -irr-pilot-229,,,,,,, -irr-pilot-230,,,,,,, -irr-pilot-231,,,,,,, -irr-pilot-232,,,,,,, -irr-pilot-233,,,,,,, -irr-pilot-234,,,,,,, -irr-pilot-235,,,,,,, -irr-pilot-236,,,,,,, -irr-pilot-237,,,,,,, -irr-pilot-238,,,,,,, -irr-pilot-239,,,,,,, -irr-pilot-240,,,,,,, -irr-pilot-241,,,,,,, -irr-pilot-242,,,,,,, -irr-pilot-243,,,,,,, -irr-pilot-244,,,,,,, -irr-pilot-245,,,,,,, -irr-pilot-246,,,,,,, -irr-pilot-247,,,,,,, -irr-pilot-248,,,,,,, -irr-pilot-249,,,,,,, -irr-pilot-250,,,,,,, -irr-pilot-251,,,,,,, -irr-pilot-252,,,,,,, -irr-pilot-253,,,,,,, -irr-pilot-254,,,,,,, -irr-pilot-255,,,,,,, -irr-pilot-256,,,,,,, -irr-pilot-257,,,,,,, -irr-pilot-258,,,,,,, -irr-pilot-259,,,,,,, -irr-pilot-260,,,,,,, -irr-pilot-261,,,,,,, -irr-pilot-262,,,,,,, -irr-pilot-263,,,,,,, -irr-pilot-264,,,,,,, -irr-pilot-265,,,,,,, -irr-pilot-266,,,,,,, -irr-pilot-267,,,,,,, -irr-pilot-268,,,,,,, -irr-pilot-269,,,,,,, -irr-pilot-270,,,,,,, -irr-pilot-271,,,,,,, -irr-pilot-272,,,,,,, -irr-pilot-273,,,,,,, -irr-pilot-274,,,,,,, -irr-pilot-275,,,,,,, -irr-pilot-276,,,,,,, -irr-pilot-277,,,,,,, -irr-pilot-278,,,,,,, -irr-pilot-279,,,,,,, -irr-pilot-280,,,,,,, -irr-pilot-281,,,,,,, -irr-pilot-282,,,,,,, -irr-pilot-283,,,,,,, -irr-pilot-284,,,,,,, -irr-pilot-285,,,,,,, -irr-pilot-286,,,,,,, -irr-pilot-287,,,,,,, -irr-pilot-288,,,,,,, -irr-pilot-289,,,,,,, -irr-pilot-290,,,,,,, -irr-pilot-291,,,,,,, -irr-pilot-292,,,,,,, -irr-pilot-293,,,,,,, -irr-pilot-294,,,,,,, -irr-pilot-295,,,,,,, -irr-pilot-296,,,,,,, -irr-pilot-297,,,,,,, -irr-pilot-298,,,,,,, -irr-pilot-299,,,,,,, -irr-pilot-300,,,,,,, +sample_id,coder_id,drug_mention_verbatim,personal_use,sentiment,signal_strength,confidence,side_effects_reported,side_effects_description,notes +irr-pilot-001,,,,,,,,, +irr-pilot-002,,,,,,,,, +irr-pilot-003,,,,,,,,, +irr-pilot-004,,,,,,,,, +irr-pilot-005,,,,,,,,, +irr-pilot-006,,,,,,,,, +irr-pilot-007,,,,,,,,, +irr-pilot-008,,,,,,,,, +irr-pilot-009,,,,,,,,, +irr-pilot-010,,,,,,,,, +irr-pilot-011,,,,,,,,, +irr-pilot-012,,,,,,,,, +irr-pilot-013,,,,,,,,, +irr-pilot-014,,,,,,,,, +irr-pilot-015,,,,,,,,, +irr-pilot-016,,,,,,,,, +irr-pilot-017,,,,,,,,, +irr-pilot-018,,,,,,,,, +irr-pilot-019,,,,,,,,, +irr-pilot-020,,,,,,,,, +irr-pilot-021,,,,,,,,, +irr-pilot-022,,,,,,,,, +irr-pilot-023,,,,,,,,, +irr-pilot-024,,,,,,,,, +irr-pilot-025,,,,,,,,, +irr-pilot-026,,,,,,,,, +irr-pilot-027,,,,,,,,, +irr-pilot-028,,,,,,,,, +irr-pilot-029,,,,,,,,, +irr-pilot-030,,,,,,,,, +irr-pilot-031,,,,,,,,, +irr-pilot-032,,,,,,,,, +irr-pilot-033,,,,,,,,, +irr-pilot-034,,,,,,,,, +irr-pilot-035,,,,,,,,, +irr-pilot-036,,,,,,,,, +irr-pilot-037,,,,,,,,, +irr-pilot-038,,,,,,,,, +irr-pilot-039,,,,,,,,, +irr-pilot-040,,,,,,,,, +irr-pilot-041,,,,,,,,, +irr-pilot-042,,,,,,,,, +irr-pilot-043,,,,,,,,, +irr-pilot-044,,,,,,,,, +irr-pilot-045,,,,,,,,, +irr-pilot-046,,,,,,,,, +irr-pilot-047,,,,,,,,, +irr-pilot-048,,,,,,,,, +irr-pilot-049,,,,,,,,, +irr-pilot-050,,,,,,,,, +irr-pilot-051,,,,,,,,, +irr-pilot-052,,,,,,,,, +irr-pilot-053,,,,,,,,, +irr-pilot-054,,,,,,,,, +irr-pilot-055,,,,,,,,, +irr-pilot-056,,,,,,,,, +irr-pilot-057,,,,,,,,, +irr-pilot-058,,,,,,,,, +irr-pilot-059,,,,,,,,, +irr-pilot-060,,,,,,,,, +irr-pilot-061,,,,,,,,, +irr-pilot-062,,,,,,,,, +irr-pilot-063,,,,,,,,, +irr-pilot-064,,,,,,,,, +irr-pilot-065,,,,,,,,, +irr-pilot-066,,,,,,,,, +irr-pilot-067,,,,,,,,, +irr-pilot-068,,,,,,,,, +irr-pilot-069,,,,,,,,, +irr-pilot-070,,,,,,,,, +irr-pilot-071,,,,,,,,, +irr-pilot-072,,,,,,,,, +irr-pilot-073,,,,,,,,, +irr-pilot-074,,,,,,,,, +irr-pilot-075,,,,,,,,, +irr-pilot-076,,,,,,,,, +irr-pilot-077,,,,,,,,, +irr-pilot-078,,,,,,,,, +irr-pilot-079,,,,,,,,, +irr-pilot-080,,,,,,,,, +irr-pilot-081,,,,,,,,, +irr-pilot-082,,,,,,,,, +irr-pilot-083,,,,,,,,, +irr-pilot-084,,,,,,,,, +irr-pilot-085,,,,,,,,, +irr-pilot-086,,,,,,,,, +irr-pilot-087,,,,,,,,, +irr-pilot-088,,,,,,,,, +irr-pilot-089,,,,,,,,, +irr-pilot-090,,,,,,,,, +irr-pilot-091,,,,,,,,, +irr-pilot-092,,,,,,,,, +irr-pilot-093,,,,,,,,, +irr-pilot-094,,,,,,,,, +irr-pilot-095,,,,,,,,, +irr-pilot-096,,,,,,,,, +irr-pilot-097,,,,,,,,, +irr-pilot-098,,,,,,,,, +irr-pilot-099,,,,,,,,, +irr-pilot-100,,,,,,,,, +irr-pilot-101,,,,,,,,, +irr-pilot-102,,,,,,,,, +irr-pilot-103,,,,,,,,, +irr-pilot-104,,,,,,,,, +irr-pilot-105,,,,,,,,, +irr-pilot-106,,,,,,,,, +irr-pilot-107,,,,,,,,, +irr-pilot-108,,,,,,,,, +irr-pilot-109,,,,,,,,, +irr-pilot-110,,,,,,,,, +irr-pilot-111,,,,,,,,, +irr-pilot-112,,,,,,,,, +irr-pilot-113,,,,,,,,, +irr-pilot-114,,,,,,,,, +irr-pilot-115,,,,,,,,, +irr-pilot-116,,,,,,,,, +irr-pilot-117,,,,,,,,, +irr-pilot-118,,,,,,,,, +irr-pilot-119,,,,,,,,, +irr-pilot-120,,,,,,,,, +irr-pilot-121,,,,,,,,, +irr-pilot-122,,,,,,,,, +irr-pilot-123,,,,,,,,, +irr-pilot-124,,,,,,,,, +irr-pilot-125,,,,,,,,, +irr-pilot-126,,,,,,,,, +irr-pilot-127,,,,,,,,, +irr-pilot-128,,,,,,,,, +irr-pilot-129,,,,,,,,, +irr-pilot-130,,,,,,,,, +irr-pilot-131,,,,,,,,, +irr-pilot-132,,,,,,,,, +irr-pilot-133,,,,,,,,, +irr-pilot-134,,,,,,,,, +irr-pilot-135,,,,,,,,, +irr-pilot-136,,,,,,,,, +irr-pilot-137,,,,,,,,, +irr-pilot-138,,,,,,,,, +irr-pilot-139,,,,,,,,, +irr-pilot-140,,,,,,,,, +irr-pilot-141,,,,,,,,, +irr-pilot-142,,,,,,,,, +irr-pilot-143,,,,,,,,, +irr-pilot-144,,,,,,,,, +irr-pilot-145,,,,,,,,, +irr-pilot-146,,,,,,,,, +irr-pilot-147,,,,,,,,, +irr-pilot-148,,,,,,,,, +irr-pilot-149,,,,,,,,, +irr-pilot-150,,,,,,,,, +irr-pilot-151,,,,,,,,, +irr-pilot-152,,,,,,,,, +irr-pilot-153,,,,,,,,, +irr-pilot-154,,,,,,,,, +irr-pilot-155,,,,,,,,, +irr-pilot-156,,,,,,,,, +irr-pilot-157,,,,,,,,, +irr-pilot-158,,,,,,,,, +irr-pilot-159,,,,,,,,, +irr-pilot-160,,,,,,,,, +irr-pilot-161,,,,,,,,, +irr-pilot-162,,,,,,,,, +irr-pilot-163,,,,,,,,, +irr-pilot-164,,,,,,,,, +irr-pilot-165,,,,,,,,, +irr-pilot-166,,,,,,,,, +irr-pilot-167,,,,,,,,, +irr-pilot-168,,,,,,,,, +irr-pilot-169,,,,,,,,, +irr-pilot-170,,,,,,,,, +irr-pilot-171,,,,,,,,, +irr-pilot-172,,,,,,,,, +irr-pilot-173,,,,,,,,, +irr-pilot-174,,,,,,,,, +irr-pilot-175,,,,,,,,, +irr-pilot-176,,,,,,,,, +irr-pilot-177,,,,,,,,, +irr-pilot-178,,,,,,,,, +irr-pilot-179,,,,,,,,, +irr-pilot-180,,,,,,,,, +irr-pilot-181,,,,,,,,, +irr-pilot-182,,,,,,,,, +irr-pilot-183,,,,,,,,, +irr-pilot-184,,,,,,,,, +irr-pilot-185,,,,,,,,, +irr-pilot-186,,,,,,,,, +irr-pilot-187,,,,,,,,, +irr-pilot-188,,,,,,,,, +irr-pilot-189,,,,,,,,, +irr-pilot-190,,,,,,,,, +irr-pilot-191,,,,,,,,, +irr-pilot-192,,,,,,,,, +irr-pilot-193,,,,,,,,, +irr-pilot-194,,,,,,,,, +irr-pilot-195,,,,,,,,, +irr-pilot-196,,,,,,,,, +irr-pilot-197,,,,,,,,, +irr-pilot-198,,,,,,,,, +irr-pilot-199,,,,,,,,, +irr-pilot-200,,,,,,,,, +irr-pilot-201,,,,,,,,, +irr-pilot-202,,,,,,,,, +irr-pilot-203,,,,,,,,, +irr-pilot-204,,,,,,,,, +irr-pilot-205,,,,,,,,, +irr-pilot-206,,,,,,,,, +irr-pilot-207,,,,,,,,, +irr-pilot-208,,,,,,,,, +irr-pilot-209,,,,,,,,, +irr-pilot-210,,,,,,,,, +irr-pilot-211,,,,,,,,, +irr-pilot-212,,,,,,,,, +irr-pilot-213,,,,,,,,, +irr-pilot-214,,,,,,,,, +irr-pilot-215,,,,,,,,, +irr-pilot-216,,,,,,,,, +irr-pilot-217,,,,,,,,, +irr-pilot-218,,,,,,,,, +irr-pilot-219,,,,,,,,, +irr-pilot-220,,,,,,,,, +irr-pilot-221,,,,,,,,, +irr-pilot-222,,,,,,,,, +irr-pilot-223,,,,,,,,, +irr-pilot-224,,,,,,,,, +irr-pilot-225,,,,,,,,, +irr-pilot-226,,,,,,,,, +irr-pilot-227,,,,,,,,, +irr-pilot-228,,,,,,,,, +irr-pilot-229,,,,,,,,, +irr-pilot-230,,,,,,,,, +irr-pilot-231,,,,,,,,, +irr-pilot-232,,,,,,,,, +irr-pilot-233,,,,,,,,, +irr-pilot-234,,,,,,,,, +irr-pilot-235,,,,,,,,, +irr-pilot-236,,,,,,,,, +irr-pilot-237,,,,,,,,, +irr-pilot-238,,,,,,,,, +irr-pilot-239,,,,,,,,, +irr-pilot-240,,,,,,,,, +irr-pilot-241,,,,,,,,, +irr-pilot-242,,,,,,,,, +irr-pilot-243,,,,,,,,, +irr-pilot-244,,,,,,,,, +irr-pilot-245,,,,,,,,, +irr-pilot-246,,,,,,,,, +irr-pilot-247,,,,,,,,, +irr-pilot-248,,,,,,,,, +irr-pilot-249,,,,,,,,, +irr-pilot-250,,,,,,,,, +irr-pilot-251,,,,,,,,, +irr-pilot-252,,,,,,,,, +irr-pilot-253,,,,,,,,, +irr-pilot-254,,,,,,,,, +irr-pilot-255,,,,,,,,, +irr-pilot-256,,,,,,,,, +irr-pilot-257,,,,,,,,, +irr-pilot-258,,,,,,,,, +irr-pilot-259,,,,,,,,, +irr-pilot-260,,,,,,,,, +irr-pilot-261,,,,,,,,, +irr-pilot-262,,,,,,,,, +irr-pilot-263,,,,,,,,, +irr-pilot-264,,,,,,,,, +irr-pilot-265,,,,,,,,, +irr-pilot-266,,,,,,,,, +irr-pilot-267,,,,,,,,, +irr-pilot-268,,,,,,,,, +irr-pilot-269,,,,,,,,, +irr-pilot-270,,,,,,,,, +irr-pilot-271,,,,,,,,, +irr-pilot-272,,,,,,,,, +irr-pilot-273,,,,,,,,, +irr-pilot-274,,,,,,,,, +irr-pilot-275,,,,,,,,, +irr-pilot-276,,,,,,,,, +irr-pilot-277,,,,,,,,, +irr-pilot-278,,,,,,,,, +irr-pilot-279,,,,,,,,, +irr-pilot-280,,,,,,,,, +irr-pilot-281,,,,,,,,, +irr-pilot-282,,,,,,,,, +irr-pilot-283,,,,,,,,, +irr-pilot-284,,,,,,,,, +irr-pilot-285,,,,,,,,, +irr-pilot-286,,,,,,,,, +irr-pilot-287,,,,,,,,, +irr-pilot-288,,,,,,,,, +irr-pilot-289,,,,,,,,, +irr-pilot-290,,,,,,,,, +irr-pilot-291,,,,,,,,, +irr-pilot-292,,,,,,,,, +irr-pilot-293,,,,,,,,, +irr-pilot-294,,,,,,,,, +irr-pilot-295,,,,,,,,, +irr-pilot-296,,,,,,,,, +irr-pilot-297,,,,,,,,, +irr-pilot-298,,,,,,,,, +irr-pilot-299,,,,,,,,, +irr-pilot-300,,,,,,,,, diff --git a/docs/irr_pilot_500/coder_output_template.csv b/docs/irr_pilot_500/coder_output_template.csv index 3e4e94b..552605f 100644 --- a/docs/irr_pilot_500/coder_output_template.csv +++ b/docs/irr_pilot_500/coder_output_template.csv @@ -1,501 +1,501 @@ -sample_id,coder_id,drug_mention_verbatim,personal_use,sentiment,signal_strength,confidence,notes -irr-pilot-001,,,,,,, -irr-pilot-002,,,,,,, -irr-pilot-003,,,,,,, -irr-pilot-004,,,,,,, -irr-pilot-005,,,,,,, -irr-pilot-006,,,,,,, -irr-pilot-007,,,,,,, -irr-pilot-008,,,,,,, -irr-pilot-009,,,,,,, -irr-pilot-010,,,,,,, -irr-pilot-011,,,,,,, -irr-pilot-012,,,,,,, -irr-pilot-013,,,,,,, -irr-pilot-014,,,,,,, -irr-pilot-015,,,,,,, -irr-pilot-016,,,,,,, -irr-pilot-017,,,,,,, -irr-pilot-018,,,,,,, -irr-pilot-019,,,,,,, -irr-pilot-020,,,,,,, -irr-pilot-021,,,,,,, -irr-pilot-022,,,,,,, -irr-pilot-023,,,,,,, -irr-pilot-024,,,,,,, -irr-pilot-025,,,,,,, -irr-pilot-026,,,,,,, -irr-pilot-027,,,,,,, -irr-pilot-028,,,,,,, -irr-pilot-029,,,,,,, -irr-pilot-030,,,,,,, -irr-pilot-031,,,,,,, -irr-pilot-032,,,,,,, -irr-pilot-033,,,,,,, -irr-pilot-034,,,,,,, -irr-pilot-035,,,,,,, -irr-pilot-036,,,,,,, -irr-pilot-037,,,,,,, -irr-pilot-038,,,,,,, -irr-pilot-039,,,,,,, -irr-pilot-040,,,,,,, -irr-pilot-041,,,,,,, -irr-pilot-042,,,,,,, -irr-pilot-043,,,,,,, -irr-pilot-044,,,,,,, -irr-pilot-045,,,,,,, -irr-pilot-046,,,,,,, -irr-pilot-047,,,,,,, -irr-pilot-048,,,,,,, -irr-pilot-049,,,,,,, -irr-pilot-050,,,,,,, -irr-pilot-051,,,,,,, -irr-pilot-052,,,,,,, -irr-pilot-053,,,,,,, -irr-pilot-054,,,,,,, -irr-pilot-055,,,,,,, -irr-pilot-056,,,,,,, -irr-pilot-057,,,,,,, -irr-pilot-058,,,,,,, -irr-pilot-059,,,,,,, -irr-pilot-060,,,,,,, -irr-pilot-061,,,,,,, -irr-pilot-062,,,,,,, -irr-pilot-063,,,,,,, -irr-pilot-064,,,,,,, -irr-pilot-065,,,,,,, -irr-pilot-066,,,,,,, -irr-pilot-067,,,,,,, -irr-pilot-068,,,,,,, -irr-pilot-069,,,,,,, -irr-pilot-070,,,,,,, -irr-pilot-071,,,,,,, -irr-pilot-072,,,,,,, -irr-pilot-073,,,,,,, -irr-pilot-074,,,,,,, -irr-pilot-075,,,,,,, -irr-pilot-076,,,,,,, -irr-pilot-077,,,,,,, -irr-pilot-078,,,,,,, -irr-pilot-079,,,,,,, -irr-pilot-080,,,,,,, -irr-pilot-081,,,,,,, -irr-pilot-082,,,,,,, -irr-pilot-083,,,,,,, -irr-pilot-084,,,,,,, -irr-pilot-085,,,,,,, -irr-pilot-086,,,,,,, -irr-pilot-087,,,,,,, -irr-pilot-088,,,,,,, -irr-pilot-089,,,,,,, -irr-pilot-090,,,,,,, -irr-pilot-091,,,,,,, -irr-pilot-092,,,,,,, -irr-pilot-093,,,,,,, -irr-pilot-094,,,,,,, -irr-pilot-095,,,,,,, -irr-pilot-096,,,,,,, -irr-pilot-097,,,,,,, -irr-pilot-098,,,,,,, -irr-pilot-099,,,,,,, -irr-pilot-100,,,,,,, -irr-pilot-101,,,,,,, -irr-pilot-102,,,,,,, -irr-pilot-103,,,,,,, -irr-pilot-104,,,,,,, -irr-pilot-105,,,,,,, -irr-pilot-106,,,,,,, -irr-pilot-107,,,,,,, -irr-pilot-108,,,,,,, -irr-pilot-109,,,,,,, -irr-pilot-110,,,,,,, -irr-pilot-111,,,,,,, -irr-pilot-112,,,,,,, -irr-pilot-113,,,,,,, -irr-pilot-114,,,,,,, -irr-pilot-115,,,,,,, -irr-pilot-116,,,,,,, -irr-pilot-117,,,,,,, -irr-pilot-118,,,,,,, -irr-pilot-119,,,,,,, -irr-pilot-120,,,,,,, -irr-pilot-121,,,,,,, -irr-pilot-122,,,,,,, -irr-pilot-123,,,,,,, -irr-pilot-124,,,,,,, -irr-pilot-125,,,,,,, -irr-pilot-126,,,,,,, -irr-pilot-127,,,,,,, -irr-pilot-128,,,,,,, -irr-pilot-129,,,,,,, -irr-pilot-130,,,,,,, -irr-pilot-131,,,,,,, -irr-pilot-132,,,,,,, -irr-pilot-133,,,,,,, -irr-pilot-134,,,,,,, -irr-pilot-135,,,,,,, -irr-pilot-136,,,,,,, -irr-pilot-137,,,,,,, -irr-pilot-138,,,,,,, -irr-pilot-139,,,,,,, -irr-pilot-140,,,,,,, -irr-pilot-141,,,,,,, -irr-pilot-142,,,,,,, -irr-pilot-143,,,,,,, -irr-pilot-144,,,,,,, -irr-pilot-145,,,,,,, -irr-pilot-146,,,,,,, -irr-pilot-147,,,,,,, -irr-pilot-148,,,,,,, -irr-pilot-149,,,,,,, -irr-pilot-150,,,,,,, -irr-pilot-151,,,,,,, -irr-pilot-152,,,,,,, -irr-pilot-153,,,,,,, -irr-pilot-154,,,,,,, -irr-pilot-155,,,,,,, -irr-pilot-156,,,,,,, -irr-pilot-157,,,,,,, -irr-pilot-158,,,,,,, -irr-pilot-159,,,,,,, -irr-pilot-160,,,,,,, -irr-pilot-161,,,,,,, -irr-pilot-162,,,,,,, -irr-pilot-163,,,,,,, -irr-pilot-164,,,,,,, -irr-pilot-165,,,,,,, -irr-pilot-166,,,,,,, -irr-pilot-167,,,,,,, -irr-pilot-168,,,,,,, -irr-pilot-169,,,,,,, -irr-pilot-170,,,,,,, -irr-pilot-171,,,,,,, -irr-pilot-172,,,,,,, -irr-pilot-173,,,,,,, -irr-pilot-174,,,,,,, -irr-pilot-175,,,,,,, -irr-pilot-176,,,,,,, -irr-pilot-177,,,,,,, -irr-pilot-178,,,,,,, -irr-pilot-179,,,,,,, -irr-pilot-180,,,,,,, -irr-pilot-181,,,,,,, -irr-pilot-182,,,,,,, -irr-pilot-183,,,,,,, -irr-pilot-184,,,,,,, -irr-pilot-185,,,,,,, -irr-pilot-186,,,,,,, -irr-pilot-187,,,,,,, -irr-pilot-188,,,,,,, -irr-pilot-189,,,,,,, -irr-pilot-190,,,,,,, -irr-pilot-191,,,,,,, -irr-pilot-192,,,,,,, -irr-pilot-193,,,,,,, -irr-pilot-194,,,,,,, -irr-pilot-195,,,,,,, -irr-pilot-196,,,,,,, -irr-pilot-197,,,,,,, -irr-pilot-198,,,,,,, -irr-pilot-199,,,,,,, -irr-pilot-200,,,,,,, -irr-pilot-201,,,,,,, -irr-pilot-202,,,,,,, -irr-pilot-203,,,,,,, -irr-pilot-204,,,,,,, -irr-pilot-205,,,,,,, -irr-pilot-206,,,,,,, -irr-pilot-207,,,,,,, -irr-pilot-208,,,,,,, -irr-pilot-209,,,,,,, -irr-pilot-210,,,,,,, -irr-pilot-211,,,,,,, -irr-pilot-212,,,,,,, -irr-pilot-213,,,,,,, -irr-pilot-214,,,,,,, -irr-pilot-215,,,,,,, -irr-pilot-216,,,,,,, -irr-pilot-217,,,,,,, -irr-pilot-218,,,,,,, -irr-pilot-219,,,,,,, -irr-pilot-220,,,,,,, -irr-pilot-221,,,,,,, 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+irr-pilot-479,,,,,,,,, +irr-pilot-480,,,,,,,,, +irr-pilot-481,,,,,,,,, +irr-pilot-482,,,,,,,,, +irr-pilot-483,,,,,,,,, +irr-pilot-484,,,,,,,,, +irr-pilot-485,,,,,,,,, +irr-pilot-486,,,,,,,,, +irr-pilot-487,,,,,,,,, +irr-pilot-488,,,,,,,,, +irr-pilot-489,,,,,,,,, +irr-pilot-490,,,,,,,,, +irr-pilot-491,,,,,,,,, +irr-pilot-492,,,,,,,,, +irr-pilot-493,,,,,,,,, +irr-pilot-494,,,,,,,,, +irr-pilot-495,,,,,,,,, +irr-pilot-496,,,,,,,,, +irr-pilot-497,,,,,,,,, +irr-pilot-498,,,,,,,,, +irr-pilot-499,,,,,,,,, +irr-pilot-500,,,,,,,,, From daf258da3cd44855b41e229e5a8bf3f4d6735fa5 Mon Sep 17 00:00:00 2001 From: Shaun Date: Mon, 4 May 2026 14:40:53 -0700 Subject: [PATCH 5/5] codebook v1.5 -> v1.4: drift correction (side_effects never actually coded) MIME-Version: 1.0 Content-Type: text/plain; charset=UTF-8 Content-Transfer-Encoding: 8bit The v1.5 commit on this branch added side_effects_reported and side_effects_description columns "back" to the codebook + both templates, on the (incorrect) assumption that the v1.3 codebook reflected what was actually coded in the 300-pilot. It didn't. Verified by inspecting every file in data/irr_pilot/: - human_coder_polina.csv, human_coder_shaun.csv: 6 cols, no side_effects, has personal_use - all 12 ai_coder_*.csv: 8 cols, no side_effects, has personal_use - merged_long.csv: 8 cols + canonical_drug, no side_effects, has personal_use - alpha_report.md and alpha_pairwise_*.csv: α computed on drug_extracted, personal_use, sentiment, signal_strength; no side_effects α reported - coder_output_template.no_side_effects.csv.bak: original schema backup (personal_use, no side_effects) - The ONLY file in data/irr_pilot/ with side_effects_* columns was the in-data/ blank template — never populated by any coder. So side_effects_reported and side_effects_description appeared only in the v1.3 codebook + an unused template. The actual study data uses personal_use (yes/no) and no side_effects. v1.5 was adding columns to the codebook that don't exist in the data. This commit reverts to v1.4 schema (personal_use, no side_effects) which matches every actual coder output. Changelog rewritten to honestly describe v1.4 as a drift correction rather than a new feature. Also: per Shaun's request, README now explicitly states that per-coder outputs (human_coder_*, merged_long, alpha_report, etc.) are intentionally not redistributed in this repo — coder identity paired with coding decisions is treated as private to the team. data/ is already gitignored at the repo level so this is policy + documentation, not a new technical safeguard. Verified: both template headers identical (8 cols), PDF regenerated. Co-Authored-By: Claude Opus 4.7 (1M context) --- docs/irr_pilot/CODING_INSTRUCTIONS.md | 130 +-- docs/irr_pilot/CODING_INSTRUCTIONS.pdf | Bin 21528 -> 18830 bytes docs/irr_pilot/README.md | 8 +- docs/irr_pilot/coder_output_template.csv | 602 +++++------ docs/irr_pilot_500/coder_output_template.csv | 1002 +++++++++--------- 5 files changed, 857 insertions(+), 885 deletions(-) diff --git a/docs/irr_pilot/CODING_INSTRUCTIONS.md b/docs/irr_pilot/CODING_INSTRUCTIONS.md index e1bd765..2b4e177 100644 --- a/docs/irr_pilot/CODING_INSTRUCTIONS.md +++ b/docs/irr_pilot/CODING_INSTRUCTIONS.md @@ -1,4 +1,4 @@ -# Coding Instructions — PatientPunk IRR Pilot (v1.5) +# Coding Instructions — PatientPunk IRR Pilot (v1.4) **Workflow:** 1. Open `reading_packet.html` in a browser — this has all 300 posts rendered as cards, each labeled with its `sample_id`. @@ -22,13 +22,10 @@ Rules below are adapted from the AI pipeline's prompts. Disagreement between cod | `sentiment` | `positive` / `negative` / `mixed` / `neutral` | Author's sentiment about THIS DRUG specifically. Only filled when `personal_use = yes`. Use `neutral` only when personal use is unclear or the author explicitly takes no position despite using the drug. | | `signal_strength` | `strong` / `moderate` / `weak` / `n/a` | **About the post:** how emphatic/specific/quantified is the author's report on this drug? Use `n/a` when `personal_use = no`. | | `confidence` | 1–5 | **About your coding:** how sure are you the labels you picked are right? Always filled, even when `personal_use = no`. | -| `side_effects_reported` | `yes` / `no` | Does the author report any side effects they personally experienced from THIS DRUG? Only filled when `personal_use = yes`; leave blank when `personal_use = no`. | -| `side_effects_description` | free text | Brief description of what side effects, if any. Leave blank if `side_effects_reported = no` or `personal_use = no`. | | `notes` | free text | Reasoning, ambiguity flags, anything worth recording (optional) | -> **⚠️ STOP rule.** If `personal_use = no`, leave `sentiment`, -> `signal_strength`, `side_effects_reported`, and `side_effects_description` -> blank (or set to `n/a` where applicable) and move on. The classifier and +> **⚠️ STOP rule.** If `personal_use = no`, leave `sentiment` and +> `signal_strength` blank (or set to `n/a`) and move on. The classifier and > the analysis only count personal-use reports, so non-personal-use rows > contribute to inter-coder reliability on the `personal_use` decision and > nothing further. @@ -43,17 +40,17 @@ Rules below are adapted from the AI pipeline's prompts. Disagreement between cod ## Multi-drug example (read this first) -Sample `irr-pilot-003` says: *"I'm on LDN and magnesium. LDN gave me insomnia first 2 weeks but settled. About 40% better than a year ago."* +Sample `irr-pilot-003` says: *"I'm on LDN and magnesium. About 40% better than a year ago."* Two rows, both with `sample_id = irr-pilot-003`: -| sample_id | coder_id | drug_mention_verbatim | personal_use | sentiment | signal_strength | confidence | side_effects_reported | side_effects_description | notes | -|---|---|---|---|---|---|---|---|---|---| -| irr-pilot-003 | eli | LDN | yes | positive | strong | 4 | yes | insomnia first 2 weeks | in stack | -| irr-pilot-003 | eli | magnesium | yes | positive | weak | 4 | no | | in stack | +| sample_id | coder_id | drug_mention_verbatim | personal_use | sentiment | signal_strength | confidence | notes | +|---|---|---|---|---|---|---|---| +| irr-pilot-003 | eli | LDN | yes | positive | weak | 4 | in stack | +| irr-pilot-003 | eli | magnesium | yes | positive | weak | 4 | in stack | Same sample_id, one row per drug, each drug gets its own per-drug -`personal_use` / `sentiment` / `signal_strength` / `side_effects_*`. +`personal_use` / `sentiment` / `signal_strength`. --- @@ -117,47 +114,15 @@ Use the full range — **5** unambiguous, **3** reasonable people could disagree --- -## Step 6 — side effects (per drug, only when personal_use = yes) - -### `side_effects_reported` (yes / no) - -**`yes`** when the author personally reports any side effect they experienced from THIS DRUG specifically. Includes: - -- Physical side effects ("Paxlovid gave me terrible metallic taste") -- Mental/mood side effects ("SSRI made me emotionally numb") -- Dose-titration issues attributed to the drug -- Discontinuation because of intolerable side effects - -**`no`** when: -- No side effects mentioned for this drug -- Side effects mentioned hypothetically or for other people -- Side effects implied but not attributed to this specific drug - -Leave **blank** when `personal_use = no`. - -### `side_effects_description` (free text) - -Short phrase capturing what side effects, if any. Examples: - -- "metallic taste, diarrhea during 5-day course" -- "insomnia first week" -- "moon face, weight gain on long-term use" - -Leave blank if `side_effects_reported = no` or `personal_use = no`. - -**Important — do NOT conflate side effects with lack of efficacy.** "Didn't work" is a negative `sentiment` but not a side effect. Side effects are distinct adverse experiences. - ---- - ## Special cases -**Causal-context drugs** — author blames a treatment for causing their condition (e.g., "the Moderna shot is what gave me long COVID"): `personal_use = yes` (they did receive it), `sentiment = negative`, `signal_strength = weak`, side_effects_reported per the actual experience described, `notes = causal-context`. +**Causal-context drugs** — author blames a treatment for causing their condition (e.g., "the Moderna shot is what gave me long COVID"): `personal_use = yes` (they did receive it), `sentiment = negative`, `signal_strength = weak`, `notes = causal-context`. -**Multi-drug stacks** — one row per drug. Each gets its own `personal_use` and (if yes) its own sentiment + side-effects based on what the author says about that specific drug. If overall improvement is mentioned but no drug is specifically credited, default to `personal_use = yes` / `positive` / `weak` / no side effects per drug. +**Multi-drug stacks** — one row per drug. Each gets its own `personal_use` and (if yes) its own sentiment based on what the author says about that specific drug. If overall improvement is mentioned but no drug is specifically credited, default to `personal_use = yes` / `positive` / `weak` per drug. -**Questions / advice / hearsay** — `personal_use = no`; sentiment, signal_strength, side_effects fields blank. +**Questions / advice / hearsay** — `personal_use = no`, sentiment / signal_strength blank. -**No treatments mentioned at all** — single row with `drug_mention_verbatim = NONE`, all other annotation fields blank, `confidence = 5`. +**No treatments mentioned at all** — single row with `drug_mention_verbatim = NONE`, `personal_use` blank, other annotation fields blank, `confidence = 5`. **Irrelevant mentions** (drug mentioned only in a subreddit name, URL, signature) — don't code. @@ -165,43 +130,41 @@ Leave blank if `side_effects_reported = no` or `personal_use = no`. ## Worked examples -Format: `drug / personal_use / sentiment / signal_strength / confidence / side_effects_reported / side_effects_description / notes` - -**1 — personal use, positive, strong, no side effects:** +**1 — personal use, positive, strong:** *"I started LDN 4.5mg 6 months ago and my fatigue dropped by probably 70%."* -→ LDN / yes / positive / strong / 5 / no / (blank) / *quantified improvement* +→ LDN / yes / positive / strong / 5 / *quantified improvement* **2 — multi-drug stack (one row per drug):** -*"I'm on LDN, H1 blockers, and magnesium. Probably 40% better than a year ago. LDN made me jittery the first week."* +*"I'm on LDN, H1 blockers, and magnesium. Probably 40% better than a year ago."* → Three rows, same sample_id: -- LDN / yes / positive / weak / 4 / yes / "jittery first week" / in stack -- H1 blockers / yes / positive / weak / 4 / no / (blank) / in stack -- magnesium / yes / positive / weak / 4 / no / (blank) / in stack +- LDN / yes / positive / weak / 4 / in stack +- H1 blockers / yes / positive / weak / 4 / in stack +- magnesium / yes / positive / weak / 4 / in stack **3 — question, no personal use:** *"Has anyone tried paxlovid late — like, more than 5 days after onset?"* -→ paxlovid / no / (blank) / n/a / 5 / (blank) / (blank) / *question to others* +→ paxlovid / no / (blank) / n/a / 5 / *question to others* -**4 — mixed with side effect:** +**4 — mixed:** *"LDN definitely helped my pain — but tanked my sleep for the first 2 months. Still worth it."* -→ LDN / yes / mixed / strong / 5 / yes / "sleep disruption first 2 months" / *helped pain, hurt sleep* +→ LDN / yes / mixed / strong / 5 / *helped pain, hurt sleep* **5 — causal-context:** *"I was fine until my second Pfizer shot. That's when everything started."* -→ Pfizer / yes / negative / weak / 4 / no / (blank) / *causal-context* +→ Pfizer / yes / negative / weak / 4 / *causal-context* -**6 — negative, side-effect-driven:** -*"Took Paxlovid for 5 days. Terrible metallic taste, couldn't finish. Didn't notice any improvement either."* -→ Paxlovid / yes / negative / strong / 5 / yes / "metallic taste, stopped early" / *no perceived effect* +**6 — negative:** +*"Took Paxlovid for 5 days. Didn't notice any improvement."* +→ Paxlovid / yes / negative / strong / 5 / *no perceived effect* **7 — no drugs:** *"Today was really rough. Spent most of the day in bed."* -→ NONE / (blank) / (blank) / (blank) / 5 / (blank) / (blank) / *no drug mentioned* +→ NONE / (blank) / (blank) / (blank) / 5 / *no drug mentioned* **8 — reply without personal use:** Parent: "LDN has been a game-changer for my PEM." Reply: "How did you get your doctor to prescribe it?" -→ LDN / no / (blank) / n/a / 5 / (blank) / (blank) / *reply doesn't express personal use* +→ LDN / no / (blank) / n/a / 5 / *reply doesn't express personal use* --- @@ -215,10 +178,8 @@ Code blind — don't look at AI coder outputs, don't discuss with other coders u For each drug in the post: personal_use = ? -├── no (question / hearsay / advice / hypothetical / → no -│ reply doesn't express personal use) / sentiment blank -│ / signal_strength = n/a -│ / side_effects_* blank +├── no (question / hearsay / advice / hypothetical / → no / sentiment blank +│ reply doesn't express personal use) / signal_strength = n/a │ / record confidence │ └── yes (author describes own experience) → yes / fill all below @@ -235,23 +196,30 @@ personal_use = ? ├── simple affirm or deny, no detail → moderate └── in a stack, no specific credit → weak - side_effects_reported = ? - ├── author describes adverse experience - │ from THIS drug → yes (+ describe) - └── no side effects mentioned for this drug → no - confidence = 1..5 (always — including for personal_use = no) ``` --- -## What changed from v1.3 / v1.4 +## v1.4 — drift correction + +v1.4 is a correction, not a redesign. The earlier v1.3 codebook drifted away from the schema actually used to code the 300-pilot study. Specifically, v1.3 described `side_effects_reported` and `side_effects_description` as coder-filled columns, and dropped `personal_use` from the columns table. But the human and AI coder outputs (`human_coder_*.csv`, `ai_coder_*.csv` in `data/irr_pilot/`) and the published Krippendorff's α report all use a different schema: + +``` +sample_id, coder_id, drug_mention_verbatim, personal_use, +sentiment, signal_strength, confidence, notes +``` + +- `personal_use` (yes/no) was actually collected. +- `side_effects_reported` and `side_effects_description` were never populated by any coder (human or AI). They lived only in the v1.3 codebook + an unused `coder_output_template.csv` file. + +v1.4 brings the codebook back into sync with the data: -- **v1.4 (draft, never shipped) experimentally dropped `side_effects_reported` and `side_effects_description` in favour of just adding `personal_use`.** Reviewer feedback was to keep the side-effects pair in addition to the new `personal_use` column. -- **v1.5 is the union:** `personal_use` (added in v1.4) is kept, AND `side_effects_reported` / `side_effects_description` (from v1.3) are kept. Final schema has 10 coder-filled columns: `sample_id, coder_id, drug_mention_verbatim, personal_use, sentiment, signal_strength, confidence, side_effects_reported, side_effects_description, notes`. -- **`personal_use` gates everything else.** When `personal_use = no`, sentiment, signal_strength, side_effects_reported, and side_effects_description are all blank (or `n/a` where applicable). Confidence is always recorded. -- **Single-schema templates.** Both the 300-pilot and 500-pilot `coder_output_template.csv` files share the v1.5 schema. -- Updated worked examples (8 cases, all show the side-effects columns) and decision tree (now includes the side-effects branch). +- **Removed**: `side_effects_reported` and `side_effects_description` columns and the corresponding step. They were not actually coded; describing them in the codebook was misleading. +- **Restored**: `personal_use` (yes/no), with explicit semantics. Was previously implicit (encoded as `sentiment = neutral` in v1.3 prose), but the actual coded data has the explicit column. +- **Tightened**: `sentiment` and `signal_strength` are now described as conditional on `personal_use = yes`, matching how coders actually treated them. +- **Single-schema templates.** Both the 300-pilot and 500-pilot `coder_output_template.csv` files share this schema, matching what was actually coded in the 300-pilot. +- Updated worked examples and decision tree. -*v1.5 · pilot run with explicit `personal_use` flag plus per-drug side-effects dimension. 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