Long COVID with POTS-like symptoms and MCAS, housebound with PEM, now somewhat better
- Condition
- Long COVID
- At worst
- Moderate (mostly housebound)
- Ill before improving or writing
- 2.5 years
- Last post
- Sep 2026
In their words
- Condition: Long COVID
I've had long COVID for about 2-3 years
In context ↗ - At worst: Moderate
I've had long COVID for about 2-3 years with the start of PEM (house bound) this last year after last year's infection
In context ↗ - Now: Somewhat better
I started to get better but that is a discussion for another post.
In context ↗ - Began after: COVID
as soon as I got COVID the first time this all started
In context ↗
Read from 4 of their posts and comments; links to the 4 this page draws on
Summary
After repeated COVID infections they had long COVID for two to three years with POTS-like heart symptoms, blood-pressure swings and MCAS, plus premenstrual crashes that left them borderline bedridden. PEM after the previous year's infection left them housebound, though they had started to improve by late 2026. Correcting a low B12 level ended their psychosis-like anxiety; they then caught a possible infection and sought paxlovid before their wedding.
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What they tried
Their words about each treatment
- b vitamins, especially b12 · Helped
Once I got it up my "biological" psychosis/anxiety dissipated
In context ↗ - paxlovid · Not said
I took paxlovid a year ago for my 4th infection so there's no concern of liver stuff
In context ↗
Their path
How ill they were on the ME/CFS severity scale, estimated from what they describe at each point, in the order they describe; they don’t give enough times to place each step. Hover or tap a point. 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 | First COVID infection; ongoing health problems beganas soon as I got COVID the first time this all startedIn context ↗ | Not stated |
| — | POTS-like symptoms eased over time; MCAS persistedIt got better for me the first timeIn context ↗ | Mild |
| 2025-09-20 | Bad POTS symptoms 9 months after a second infection; cannot exercise without an attackAt 9 months is when the bad POTS stuff started and it hasn't been keeping me in bed but I definitely cannot exercise without an attackIn context ↗ | Mild |
| 2025 | PEM began and she became housebound after that year's infectionwith the start of PEM (house bound) this last year after last year's infectionIn context ↗ | Moderate |
| 2026-09-30 | Started to get better, then caught a possible infection before her weddingI started to get better but that is a discussion for another postIn context ↗ | Moderate |
Symptoms mentioned
Their words about their symptoms
- POTS & dysautonomia
got heart complications (palps, blood pressure swings, POTS like symptoms)
In context ↗ - Mast cell (MCAS) & allergies
I got diagnosed with MCAS and all the MCAS stuff has stayed for years since the first infection
In context ↗ - Post-exertional malaise
the start of PEM (house bound) this last year after last year's infection
In context ↗ - Anxiety & low mood
Once I got it up my "biological" psychosis/anxiety dissipated.
In context ↗