Long COVID fluctuating at 20-65% of normal, somewhat better with Corlanor and MCAS control
- Condition
- Long COVID
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 3.5 years
- Last post
- Apr 2026
In their words
- Condition: Long COVID
After having Covid and cancer in 2020, then developing long Covid
In context ↗ - At worst: Severe
Really fluctuated between 20-65% in the first two years.
In context ↗ - Now: Somewhat better
A lot has gotten better over the past three and a half years ... But I’m left with debilitating fatigue, PEM, muscle weakness, cognitive issues, and insomnia.
In context ↗ - Began after: COVID
After having Covid and cancer in 2020, then developing long Covid
In context ↗
Read from 18 of their posts and comments; links to the 13 this page draws on
Summary
Long-COVID patient ill since April 2020, whose function fluctuated between 20% and 65% of normal and was set back by pneumonia in January 2023. By late 2023 they were back to about 50% recovered: MCAS controlled and Corlanor helping dysautonomia, but still with debilitating fatigue, PEM, muscle weakness, cognitive issues and insomnia. They focused on nervous-system and autonomic rehabilitation, saw glacial gains, and began a Bezisterim trial in 2026.
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What they tried
What they credit
Also tried
Their words about each treatment
- Novavax · Helped
Initial two days were rough - slept through them. But then last week I had two of the best days in a long time. Dysautonomia and POTS symptoms were pretty much gone.
In context ↗ - Hydroxyzine · Helped
Hydroxyzine helps a bit
In context ↗ - eating low histamine · Helped
as does eating low histamine
In context ↗ - recumbent bike · Helped
I do better on a recumbent bike than I do walking. Build so slowly.
In context ↗ - Yoga nidra (guided body scan meditation) · Helped
Yoga nidra (guided body scan meditation) has been incredibly helpful for me.
In context ↗ - Corlanor · Helped
Corlanor helps a lot with the dysautonomia and cardiac stuff
In context ↗ - nervous system support and autonomic rehabilitation · Helped
putting all of my focus on nervous system support and autonomic rehabilitation and starting to see some glacial improvement, or at least stabilization
In context ↗ - Bezisterim · Not said
I just started the trial today and am feeling pretty weird in ways I don’t typically feel.
In context ↗
Approaches: POTS medication · Mind-body practices
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 12 months 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 |
|---|---|---|
| April 2020 | long COVID after Covid and cancerI am a first waver, sick since April 2020In context ↗ | Not stated |
| 2020-2022 (first two years) | function fluctuated between 20% and 65% recoveredReally fluctuated between 20-65% in the first two years.In context ↗ | Severe |
| January 2023 | set back by pneumoniaI was set back by pneumonia in January and it’s been a slog back up to 50%In context ↗ | Moderate |
| November 2023 | climbed back to about 50% recoveredit’s been a slog back up to 50%In context ↗ | Moderate |
| December 2023 | plateaued around 50%, glacial improvement with nervous system workI’m still struggling to get beyond 50% recovered.In context ↗ | Moderate |
Adverse events
- COVID vaccination as treatment“Initial two days were rough - slept through them.” In context ↗ Side effects
- COVID vaccination as treatment“new onset diarrhea after the Novavax booster ... having new, severe issues” In context ↗ Gut side effects
- Bezisterim (NE3107)“Buzzing cottony headache around my eyes. Woozy. A little tachy. Slightly irritable. Some floaters.” In context ↗ Side effects
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
I’m left with debilitating fatigue, PEM, muscle weakness, cognitive issues, and insomnia.
In context ↗ - POTS & dysautonomia
Corlanor helps a lot with the dysautonomia and cardiac stuff
In context ↗ - Mast cell (MCAS) & allergies
MCAS is pretty well controlled now
In context ↗ - Sleep problems
someone who otherwise suffers from terrible insomnia
In context ↗ - Gut problems
Has anyone experienced new onset diarrhea after the Novavax booster.
In context ↗
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