Long COVID at worst barely able to manage stairs, now somewhat better with rest and pacing
- Condition
- Long COVID
- At worst
- Mild (working or studying, with limits)
- Ill before improving or writing
- 3 years
- Last post
- Oct 2026
In their words
- Condition: Long COVID
When I got LC later I really wished I had continued with it
In context ↗ - At worst: Mild
I’ve been on the edge for over two years—not bedridden, but just barely getting through, with occasional crashes and better patches.
In context ↗ - Now: Somewhat better
I do think I experienced a bigger improvement than time or placebo effects would explain. Maybe 20-30% if I had to quantify.
In context ↗ - Began after: COVID
I got LC later I really wished I had continued with it
- Says they never had: POTS & dysautonomia
Yes, palpitations but not POTS.
Read from 16 of their posts and comments; links to the 11 this page draws on
Summary
A Reddit user with long COVID since about 2022 was at worst just barely getting through and resting after one flight of stairs, later cutting to a four-day work week. Supplements, rapamycin, LDN, tirzepatide and nicotine patches gave little; they credited time, rest and pacing and reported about 85% by mid-2025, still with brain fog and no jogging. In a blinded bezisterim trial they reported a lasting 20-30% improvement.
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What they tried
What they credit
Also tried
Their words about each treatment
- inosine pranobex · Worse
I felt a bit worse while on that medication—mostly fatigue.
In context ↗ - rapamycin · Helped
My brain fog seems better. My heart has calmed down and I don’t feel it pounding in my chest when I go to sleep.
In context ↗ - nicotine skin patches · Helped
The nicotine skin patches have been helpful, but they only work for a week or two and they make me jittery.
In context ↗ - 20+ supplements · No change
Mostly placebo effects I think but no real improvements.
In context ↗ - low histamine diet · Helped
I think I am seeing slow improvement.
In context ↗ - supplement protocols described by another user · Helped
It’s taken a couple of months but I am probably 90% now.
In context ↗ - LDN · No change
I’m on ldn now and so far no noticeable changes, but I understand it can take 6-8 weeks to start working.
In context ↗ - tirzepatide · Helped
I think I’m somewhat better after six weeks. No side effects. Started at .25 mg, I’m at .35 now.
In context ↗ - paxlovid · Worse
I took paxlovid for a couple of days and stopped when the side effects seemed too much.
In context ↗ - rest, and careful pacing · Helped
Time, rest, and careful pacing.
In context ↗ - bezisterim (trial drug) · Helped
I do think I experienced a bigger improvement than time or placebo effects would explain. Maybe 20-30% if I had to quantify.
In context ↗
Approaches: Pacing
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. 1 step has no time and sits in story order between the steps around it. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were |
|---|---|---|
| 2022 | long COVID after a COVID-19 infectionI’ve been on the edge for over two years—not bedridden, but just barely getting through, with occasional crashes and better patches.In context ↗ | Mild |
| — | at worst, had to rest after one flight of stairsWhen things were worst I would have to rest after one flight of stairs.In context ↗ | Mild |
| 2024-06 | cut to a four-day work week to avoid crashing on weekendsAbout six months ago I went down to a four day work week so I could avoid crashing on weekendsIn context ↗ | Mild |
| 2025-06-04 | about 90% after a supplement protocolIt’s taken a couple of months but I am probably 90% now.In context ↗ | Near normal |
| 2025-07-09 | about 85%, still brain fog and no joggingIt’s been three years and am maybe 85% now.In context ↗ | Mild |
| 2026-06-11 | repeated crashes after thinking better; prior gains seen as placeboLots of placebo effects, so I’d repeatedly think I had gotten better and then… crash.In context ↗ | Mild |
| 2026-09-15 | 20-30% improvement and fewer crashes in a blinded bezisterim trialI do think I experienced a bigger improvement than time or placebo effects would explain. Maybe 20-30% if I had to quantify.In context ↗ | Mild |
| 2026-10-03 | lasting improvement, still blinded to whether drug or placeboI think I have had some kind of lasting improvement, but I still don’t know if I had the drug or placebo.In context ↗ | Mild |
Adverse events
- Rapamycin / sirolimus“I was maybe a bit dizzy on and off for a couple of days and I had a slight headache that came and went.” In context ↗ Side effects
- Inosine pranobex / Imunovir“I felt a bit worse while on that medication—mostly fatigue.” In context ↗ Made symptoms worse
- Nicotine patches“The nicotine skin patches have been helpful, but they only work for a week or two and they make me jittery.” In context ↗ Side effects
- Rapamycin / sirolimus“I took rapa for four weeks and felt worse.” In context ↗ Made symptoms worse
- Paxlovid / nirmatrelvir“I took paxlovid for a couple of days and stopped when the side effects seemed too much.” In context ↗ Side effects
Symptoms mentioned
Their words about their symptoms
- Brain fog
still some brain fog but I can get through the day
In context ↗ - Post-exertional malaise
I don’t want to push it with the PEM quite yet.
In context ↗ - Heart symptoms & palpitations
My heart palpitations mostly went away
In context ↗ - Pain & fibromyalgia
Other things are harder to get a read on—thermoregulation, aches and pains, attention span.
In context ↗
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