Housebound with ME/CFS at Bell 30, somewhat better after low-dose Abilify and Mestinon
- Condition
- ME/CFS
- At worst
- Moderate (mostly housebound)
- Ill before improving or writing
- 13 months
- Last post
- Oct 2026
In their words
- Condition: ME/CFS
I fell sick 10,5 months ago and just recently got diagnosed
In context ↗ - At worst: Moderate
I’ve been stable and on Bell 30 for weeks now
In context ↗ - Now: Somewhat better
I’ve noticed gradual improvements thanks to the right medicines. It’s all baby steps
In context ↗
Read from 6 of their posts and comments; links to the 5 this page draws on
Summary
Harbor 58248 fell ill in 2025 and was very mild until a sports workout in May 2026 dropped them to Bell 40; three weeks of sick leave and pacing brought them back to Bell 60. A push–crash cycle then left them housebound at Bell 30. By September 2026 low-dose Abilify, Mestinon, ketotifen and famotidine had produced gradual gains in orthostatic intolerance and mental energy, with pacing continued and exertion still limited by PEM.
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What they tried
What they credit
Also tried
Their words about each treatment
- pacing · Helped
Sometimes this helps to mitigate PEM.
In context ↗ - LDA (low-dose Abilify) · Helped
the LDA seems to lift my energy – especially my mental energy
In context ↗ - Mestinon · Helped
my orthostatic intolerance is much better due to the Mestinon
In context ↗ - ketotifen · Not said
1–0–1 mg of ketotifen
In context ↗ - famotidine · Not said
20 mg of famotidine
In context ↗ - a few supplements · Not said
and a few supplements
In context ↗ - NAC · Worse
Sure, NAC gave me horrible stomach cramps!
In context ↗
Approaches: POTS medication · Other drugs and medicines
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. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| ~August 2025 | fell illI fell sick 10,5 months agoIn context ↗ | Mild | |
| ~May 2026 | decreased after a sports workoutmy very mild condition decreased to mild 2 months ago after a sports workout ... ~Bell 40 during the 1,5 months after the workoutIn context ↗ | Moderate | |
| ~July–August 2026 | went from very mild to moderate in a push–crash cycle, housebound at Bell 30I’ve been stable and on Bell 30 for weeks now ... Maybe I’ll move from being housebound to only partially housebound soonIn context ↗ | Moderate | |
| 2026-09-25 | gradual improvements on medication while still houseboundI’ve noticed gradual improvements thanks to the right medicines ... my orthostatic intolerance is much better due to the MestinonIn context ↗ | Moderate | Low-dose Abilify / aripiprazole |
Adverse events
- Low-dose Abilify / aripiprazole“Currently, I’m at 0.5ml but I still don’t feel anything except constant hunger.” In context ↗ Side effects
- NAC (N-acetylcysteine)“Sure, NAC gave me horrible stomach cramps!” In context ↗ Gut side effects
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
I‘m not sure if I can do full time work again without triggering PEM
In context ↗ - POTS & dysautonomia
my orthostatic intolerance is much better due to the Mestinon
In context ↗
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