Long COVID
Moderate → no benefitIll for 4 yearsNeeds ongoing treatment
Long COVID worsening for years; medication gave severe side effects and no benefit
- Condition
- Long COVID
- At worst
- Moderate (mostly housebound)
- Ill for
- 4 years
- Last post
- May 2026
In their words
- Condition: Long COVID
With them I still have to restrict my diet and I still have long covid but life is a bit more tolerable.
In context ↗ - At worst: Moderate
I’ve had some symptom improvement due to aggressive pacing, limiting my activity pretty severely, 40 pills per day
In context ↗ - Now: No benefit
I’m almost four years in and it’s gotten progressively worse over time for me.
In context ↗ - Began after: COVID
I still have long covid but life is a bit more tolerable.
In context ↗
Read from 9 of their posts and comments; links to the 9 this page draws on
Summary
Developed long COVID around late 2020 and said it had gotten progressively worse over nearly four years, with daily symptoms eased but their life more limited by aggressive pacing, 40 pills a day and mast cell and POTS drugs. A COVID reinfection made things worse. They later tried a medication that gave them severe nausea, vomiting and other side effects, and said they had no weight to lose.
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What they tried
Also tried
cetirizine· Helpedfamotidine· Helpedmontelukast· Helpedhydroxyzine· Helpedxolair· Helpedquercetin· Helpedlow histamine gf/df diet· Helpedcromolyn· HelpedMidodrine· Helpedfludrocortisone· Helpedfluids, compression, and electrolytes· Helpedfluids, compression, and electrolytes· Helpedaggressive pacing· HelpedNurtec· HelpedSumatriptan· No changetirzepatide· Worse2 nasal sprays and an inhaler· Not saidnatto· Not saidbaby aspirin· Not said
Their words about each treatment
- cetirizine · Helped
I take 40mg daily (20mg BID)
In context ↗ - famotidine · Helped
I’m also on 80mg of famotidine daily
In context ↗ - montelukast · Helped
montelukast nightly
In context ↗ - hydroxyzine · Helped
50mg hydroxyzine nightly
In context ↗ - xolair · Helped
xolair injections every four weeks
In context ↗ - quercetin · Helped
quercetin daily
In context ↗ - 2 nasal sprays and an inhaler · Not said
plus 2 nasal sprays and an inhaler
In context ↗ - low histamine gf/df diet · Helped
the low histamine gf/df diet
In context ↗ - cromolyn · Helped
Haha and I forgot cromolyn in the list too.
In context ↗ - natto · Not said
before going on natto, now I bleed closer to normal
In context ↗ - baby aspirin · Not said
I also take baby aspirin daily.
In context ↗ - Midodrine · Helped
Midodrine and fludrocortisone have helped a lot
In context ↗ - fluids, compression, and electrolytes · Helped
as long as I’m on top of fluids, compression, and electrolytes
In context ↗ - aggressive pacing · Helped
I’ve had some symptom improvement due to aggressive pacing, limiting my activity pretty severely
In context ↗ - Sumatriptan · No change
Sumatriptan didn’t work for me
In context ↗ - Nurtec · Helped
Nurtec every other day works really well
In context ↗ - tirzepatide · Worse
Was barely getting a few hundred calories in per day due to the nausea and vomiting. Tons of side effects.
In context ↗
Their path
How ill they were on the ME/CFS severity scale, estimated from what they describe at each point, with time counted from when the illness began. Hover or tap a point. The chart starts 3.1 years after onset: the story doesn’t say how ill they were before that. 1 step says too little to place on the scale and is only in the table. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were |
|---|---|---|
| onset | Long COVID onsetI still have long covid but life is a bit more tolerable.In context ↗ | Not stated |
| 2023-12-18 | Large mast cell drug regimen made symptoms more tolerable, but still treading waterIt makes enough of a difference in symptoms for me to continue to take them all but isn’t actually curing the disease.In context ↗ | Moderate |
| 2024-09-12 | Progressively worse over nearly four years; reached a plateau only by limiting activity severelyI’m almost four years in and it’s gotten progressively worse over time for me.In context ↗ | Moderate |
| 2025-10-13 | COVID reinfection made things worseMade it worse for me. I’m not chancing reinfections anymore.In context ↗ | Moderate |
| 2026-05-25 | Took tirzepatide and had severe nausea, vomiting and side effectsWas barely getting a few hundred calories in per day due to the nausea and vomiting. Tons of side effects.In context ↗ | Moderate |
Adverse events
- Tirzepatide (Mounjaro, Zepbound)“Was barely getting a few hundred calories in per day due to the nausea and vomiting. Tons of side effects.” In context ↗ Gut side effects
Symptoms mentioned
Their words about their symptoms
- Mast cell (MCAS) & allergies
I’ve had to throw a lot at mcas to make it tolerable
In context ↗ - POTS & dysautonomia
This happens to me too (usually I can stabilize myself though so I haven’t passed out yet)
In context ↗ - Post-exertional malaise
recognizing when crashes are looming so that I can rest proactively
In context ↗ - Headaches & migraine
Sumatriptan didn’t work for me but Nurtec every other day works really well
In context ↗