Long COVID
Severe → no benefitIll for 4 years
Long COVID with severe heart pain and gastritis, no overall benefit from treatment
- Condition
- Long COVID
- At worst
- Severe (mostly bedbound)
- Ill for
- 4 years
- Last post
- Dec 2024
In their words
- Condition: Long COVID
My heart is killing me, almost 4 years of this crap
In context ↗ - At worst: Severe
I've been having severe heart pain for almost 3 years now that doesn't let me walk or move.
In context ↗ - Now: No benefit
I’m worse than before trying certain meds like steroids and surgery even.
In context ↗ - Began after: COVID
So I initially got sick and was slowly recovering, took the vax twice which made me incredibly worse.
Read from 8 of their posts and comments; links to the 7 this page draws on
Summary
They became ill around 2021 and were slowly recovering when two COVID vaccine doses made them much worse, followed by severe heart pain for about four years that stopped them walking or living normally. Colchicine and Arcalyst helped the heart pain but after years of use damaged their stomach, causing gastritis and weight loss to 125 lbs. Allergic to PPIs and with H2 blockers no longer working, they could not eat properly or treat the pain.
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What they tried
Also tried
Their words about each treatment
- colchicine · Helped a lot
Colchicine and Arcalyst helped a lot, but ruined my stomach after years of use
In context ↗ - beta blockers · Worse
beta blockers increased the squeezing in my heart
In context ↗ - natto · Worse
Yes, bad stomach pain even with the enteric coated ones. Trialed many times.
In context ↗ - steroids · Worse
I'm worse than before trying certain meds like steroids and surgery even.
In context ↗ - supplements · No change
I tried a bunch of supplements over the years too and nothing helps.
In context ↗ - B vitamins · Worse
I have a really bad stomach though and can't tolerate B vitamins :(
In context ↗ - H2 blockers · Helped
already over the max dose and they stopped working
In context ↗ - PPIs · Worse
allergic to PPIs (all of them)
In context ↗ - COVID vaccination as treatment · Worse
took the vax twice which made me incredibly worse
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 first step with a time is 2.9 years after onset: the story doesn’t say how ill they were before that. The dashed part: the story doesn’t say when. 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 | fell ill and was slowly recoveringSo I initially got sick and was slowly recoveringIn context ↗ | Not stated |
| — | much worse after two vaccine doses; years of severe heart pain followedtook the vax twice which made me incredibly worseIn context ↗ | Severe |
| — | colchicine and Arcalyst helped the heart pain a lotColchicine and Arcalyst helped a lot, but ruined my stomach after years of useIn context ↗ | Severe |
| 2024-04-09 | years of colchicine destroyed their stomach; eating hurts and they lost a lot of weightYears of colchicine destroyed my stomach and so taking meds has been impossible now.In context ↗ | Severe |
| 2024-12-30 | still cannot walk or eat properly; allergic to PPIs and H2 blockers stopped workingCan’t eat properly and can’t medicate the heart pain away.In context ↗ | Severe |
Adverse events
- Beta-blockers (unspecified)“This ^ beta blockers increased the squeezing in my heart” In context ↗ Made symptoms worse
- Nattokinase“Yes, bad stomach pain even with the enteric coated ones. Trialed many times.” In context ↗ Gut side effects
- Corticosteroid pulses“I've had a lot of treatments backfire on me, and I'm worse than before trying certain meds like steroids and surgery even.” In context ↗ Made symptoms worse
- Other surgery (adrenal, lung, venoplasty)“I've had a lot of treatments backfire on me, and I'm worse than before trying certain meds like steroids and surgery even.” In context ↗ Made symptoms worse
- Colchicine“Years of colchicine destroyed my stomach and so taking meds has been impossible now. Even eating hurts to a point I've lost a lot of weight.” In context ↗ Gut side effects
- Colchicine“it's impossible to take due to stomach issues that get instantly worse and last for weeks” In context ↗ Gut side effects
- Vitamin B complex“I have a really bad stomach though and can't tolerate B vitamins :(” In context ↗ Side effects
- Colchicine“I was diagnosed with gastritis, duodenitis and gastropathy all because of the colchicine and Arcalyst meds.” In context ↗ Gut side effects
- COVID vaccination as treatment“took the vax twice which made me incredibly worse” In context ↗ Made symptoms worse
- Proton pump inhibitors (unspecified)“What makes matter worse is that I’m allergic to PPIs (all of them)” In context ↗ Allergic reaction / anaphylaxis
Symptoms mentioned
Their words about their symptoms
- Heart symptoms & palpitations
I’ve been dealing with incredible heart pain for 4 years that doesn’t let me walk or really live
In context ↗ - Gut problems
My stomach is a mess
In context ↗ - Mast cell (MCAS) & allergies
I’m allergic to PPIs (all of them)
In context ↗