Severe POTS with long COVID, improved on doxycycline then relapsed
- Condition
- Long COVID
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 3 years
- Last post
- Feb 2025
In their words
- Condition: Long COVID
I got LC in my mid 20s
In context ↗ - At worst: Severe
My wife has to help me dress every day as I can’t bend
In context ↗ - Now: Relapsed
Im still severe unfortunately finding it hard to eat
In context ↗ - Began after: COVID
my gut was absolutely decimated from COVID
In context ↗
Read from 13 of their posts and comments; links to the 11 this page draws on
Summary
Dusk 89064 fell ill with long COVID in their mid 20s, with severe POTS for two years, MCAS, gut problems, reflux and vision symptoms. The POTS vanished overnight after two years. Doxycycline, after COVID had decimated their gut and they had chronic strep on top of staph, took them from about 20% to 70% of normal, but by early 2025 they still called themselves severe and found eating hard. They remained on antihistamines and ketotifen.
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What they tried
What they credit
Also tried
Their words about each treatment
- Seeking Health HistaminX · No change
I’ve been using seeking health histaminx for like 2 years and I feel it has done nothing for my long term recovery
In context ↗ - store bought kefir · Worse
I tried store bought kefir and about died
In context ↗ - Fludrocortisone · Not said
I was prescribed Fludrocortisone and a beta blocker for a while to help retain water and salt, I’m not on the medication anymore
In context ↗ - omeprazole (PPIs) · No change
medications like PPIs and acid reducers like Pepcid did nothing for me ... put me on omeprazole which does nothing for my issue whatsoever
- Pepcid / famotidine · No change
acid reducers like Pepcid did nothing for me ... I also take famotidine, but it seems it’s not always effective at stopping it
- chewing gum · Helped
Dude gum is the only thing that helps me too
In context ↗ - Hydroxychloroquine · Not said
Im on it and it’s fine. I’m really sensitive to meds and nervous about reactions, but this hasn’t caused any issues for me
In context ↗ - anti histamines (cetirizine, loratadine, levocetirizine) · Helped
Some improved with help of anti histamines, in my case MCAS was triggering a lot of these symptoms ... Those 2 lost effectiveness for me and I need to try something new
- Ketotifen · Not said
Ketotifen 2mg at night
In context ↗ - doxycycline · Helped a lot
in my case doxycycline, my gut was absolutely decimated from COVID ... I’m not better but I’ve gone from like 20% to like 70%
In context ↗
Approaches: Antibiotics
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 3 years after onset: the story doesn’t say how ill they were before that. The dashed part: the story doesn’t say when. 3 steps say too little to place on the scale and are only in the table. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| onset | Long COVID began in mid 20sI got LC in my mid 20s which was terribleIn context ↗ | Not stated | |
| — | needed help dressing; severe POTS and refluxMy wife has to help me dress every day as I can’t bend due to the acids coming back up my esophagusIn context ↗ | Severe | |
| after 2 years | POTS disappeared overnightmy LC POTS disappeared over night after 2 years for seemingly no reasonIn context ↗ | Not stated | |
| same day as POTS remission | GERD appeared as POTS vanishedUnfortunately I got GERD the same day the POTS vanished which is really weirdIn context ↗ | Not stated | |
| 2024-12-24 | improved from about 20% to 70% after antibiotics for gut and strepI’m not better but I’ve gone from like 20% to like 70%In context ↗ | Mild | Doxycycline (Vibramycin) |
| 2025-02-12 | still severe, hard to eatIm still severe unfortunately finding it hard to eatIn context ↗ | Severe |
Adverse events
- Probiotics and fermented foods“I tried store bought kefir and about died” In context ↗ Side effects
Symptoms mentioned
Their words about their symptoms
- Mast cell (MCAS) & allergies
It keeps getting triggered by my MCAS, which I had diagnosed by an immunologist
In context ↗ - POTS & dysautonomia
my LC POTS disappeared over night after 2 years for seemingly no reason
In context ↗ - Gut problems
my gut was absolutely decimated from COVID
In context ↗ - Flu-like symptoms
Been dealing with the same thing ... I’ve been trying to figure out the cause of mine for a while
- Anxiety & low mood
Especially the neuro ones and panic
In context ↗ - Vision problems
there’s many on this list I’m still dealing with 3 years on. Especially in regards to my vision
In context ↗
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