Full-blown ME/CFS with PEM and POTS, now somewhat better on IVIG
- Condition
- ME/CFS
- At worst
- Not stated
- Ill before improving or writing
- 1 year
- Last post
- Aug 2025
In their words
- Condition: ME/CFS
now I have full blown ME/CFS
In context ↗ - Now: Somewhat better
I'm doing temporarily better because of IVIG, but maybe also long-lasting because I'm doing Low-Dose-Teclistamab and Daratumumab.
In context ↗ - Began after: COVID
Last infection was mild too, but moved waaaaay too much during acute infection and maybe started sports way too early and now I have full blown ME/CFS.
Summary
After several mild COVID infections without lasting problems, this user pushed through a mild infection in September 2024 during a flat move instead of resting. About three months later PEM and POTS appeared, and by July 2025 they described full-blown ME/CFS. By late August 2025 they were doing temporarily better on IVIG, possibly also helped by low-dose teclistamab and daratumumab; how much better and for how long was unclear.
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What they tried
What they credit
Their words about each treatment
- IVIG · Helped
I'm doing temporarily better because of IVIG
In context ↗ - Low-Dose-Teclistamab · Not said
maybe also long-lasting because I'm doing Low-Dose-Teclistamab and Daratumumab
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 | After |
|---|---|---|
| Sept. 2024 | Mild COVID infection during a flat move; pushed through and started sport earlyI was moving my flat too in Sept. 2024 and because it was a mikf infection without any fever I pushed throughIn context ↗ | |
| about 3 months after the infection | PEM and POTS appeared after getting healthy againI got healthy again but 3 months later I got PEM and POTSIn context ↗ | |
| 2025-08-31 | Temporarily better on IVIG, possibly lasting with low-dose teclistamab and daratumumabI'm doing temporarily better because of IVIGIn context ↗ | IVIG / subcutaneous Ig |
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
3 months later I got PEM and POTS
In context ↗
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