Long COVID
Severe → no benefitIll for 5 years
Long COVID with PEM, under 100 steps a day; treatments gave little benefit
- Condition
- Long COVID
- At worst
- Severe (mostly bedbound)
- Ill for
- 5 years
- Last post
- Jul 2025
In their words
- Condition: Long COVID
I'm already overrun with supplement containers from four years of lc.
In context ↗ - At worst: Severe
now it's been a few years of laying around getting less than 100 steps per day
In context ↗ - Now: No benefit
Initially I was recovorring from pem in a few days, but now it's been a few years of laying around getting less than 100 steps per day.
In context ↗ - Began after: COVID
four years of lc
Read from 14 of their posts and comments; links to the 10 this page draws on
Summary
A formerly very active endurance exerciser with long COVID since about 2020, they crashed in 2021 and never regained their baseline. By 2024 they lay around most of the day, under 100 steps daily, with PEM their worst symptom. Radical rest has been a slow road; electrolytes help blood volume and a few supplements gave tiny benefit; fludrocortisone, midodrine, mestinon and SSRIs did little, and gabapentin made them feel strange/numb. A lumbar puncture caused a CSF leak.
Ask Miruvor AI
What they tried
Also tried
mestinon· Helpedblood patch· Helpedsupps from customprobiotics· Helpedradical rest· Helpeddextromethorphan pills· Helpedmirica (pea and luteolin)· Helpedmirica (pea and luteolin)· Helpedresveratrol· Helpedlysine· No changeherbal remedies· No changeGabapentin· WorseLMNT· Not saidfludrocortisone· Not saidmidodrine· Not saidssris· Not saida million supplements· Not saidLumbar puncture (CSF drainage)· Not said
Their words about each treatment
- mestinon · Helped
I've done 60mg at a time and feel like it's maybe a tad beneficial.
In context ↗ - lysine · No change
You can try lysine or herbal remedies, but these haven't moved the needle for me.
In context ↗ - blood patch · Helped
I got a blood patch eventually, and it fixed the leak
In context ↗ - LMNT · Not said
I've been using LMNT for a couple years for my orthostatic hypotension.
In context ↗ - supps from customprobiotics · Helped
It moves the needle a little on repeat tests
In context ↗ - radical rest · Helped
Those are the only things I've tried that have been a tiny bit beneficial other than rest.
In context ↗ - fludrocortisone · Not said
I've tried lots of drugs like fludrocortisone, midodrine, mestinon, ssris, a million supplements, etc.
In context ↗ - Gabapentin · Worse
Gabapentin made my body feel strange and slightly numbed.
In context ↗ - Lumbar puncture (CSF drainage) · Not said
I did it and came up with nothing except had a csf leak and needed to do a blood patch after a week.
In context ↗
Their path
They say too little about how ill they were at each step to draw it on the severity scale, so the steps are listed as they describe them. Dates are when they posted.
| When | What happened | Where they were |
|---|---|---|
| 2020 | long COVID after a viral infection, giving up an active lifeI'm already overrun with supplement containers from four years of lc.In context ↗ | Not stated |
| 2021 | crashed after overdoing activity and never regained baselineI did something similar in 2021 and haven't regained my baseline yet.In context ↗ | Not stated |
| 2024-08 | lying around most of the day, under 100 steps a daynow it's been a few years of laying around getting less than 100 steps per dayIn context ↗ | Severe |
Adverse events
- Lumbar puncture (CSF drainage)“I did it and came up with nothing except had a csf leak and needed to do a blood patch after a week.” In context ↗ Other
- Gabapentin (Neurontin)“Gabapentin made my body feel strange and slightly numbed.” In context ↗ Side effects
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
PEM being my most debilitating symptom
In context ↗ - Muscle weakness
Yes, I get the weak arms and legs.
In context ↗ - POTS & dysautonomia
I've been using LMNT for a couple years for my orthostatic hypotension.
In context ↗