ME/CFS: low-dose naltrexone helped until it stopped, then worse than ever
- Condition
- ME/CFS
- At worst
- Moderate (mostly housebound)
- Ill before improving or writing
- Not stated
- Last post
- Oct 2026
In their words
- Condition: ME/CFS
I was diagnosed with me/cfs, Long covid, Fibromyalgia and MCAS
In context ↗ - At worst: Moderate
Ive been worse then I've ever been after a full medical collapse and been on medical leave for almost a year
In context ↗ - Now: Relapsed
Changed my life untill it didnt ... only to crash terribly again
In context ↗
Summary
A person in BC, Canada with ME/CFS, long COVID, fibromyalgia and MCAS said low-dose naltrexone, started in 2022, changed their life until it stopped working. Their specialist raised it to 12.5 mg and MCAS triple therapy reduced their symptoms over two months. After a collapse in October 2025 they were worse than ever and on medical leave for nearly a year; they stopped the triple therapy, crashed again and were losing hope.
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What they tried
What they credit
Also tried
Their words about each treatment
- low dose naltrexone · Helped a lot
I started LDN in 2022. Changed my life untill it didnt. I was at 4.5mg until this year when my long covid/me/cfs specialist bumped me up to 12.5mg titrated slowly up
In context ↗ - Reactine · Helped
Ive been on triple therapy (Reactine, Famotidine, Ketotifen) for 2 months and the symptoms have greatly decreased
In context ↗ - trigger point injections · Helped
I get trigger point injections. Helps alot
In context ↗
Approaches: H1 antihistamines · H2 blockers · Antihistamines & MCAS
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. 3 steps say too little to place on the scale and are only in the table. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| — | diagnosed with ME/CFS, long COVID, fibromyalgia and MCASI was diagnosed with me/cfs, Long covid, Fibromyalgia and MCASIn context ↗ | Not stated | |
| 2022 | started low-dose naltrexone, which changed her lifeI started LDN in 2022. Changed my life untill it didnt.In context ↗ | Not stated | Low-dose naltrexone |
| October 2025 | full medical collapse, went on medical leavesomething broke in me last October and I've been crawling my way back upIn context ↗ | Moderate | |
| 2026-06-23 | two months of MCAS triple therapy, symptoms greatly decreasedIve been on triple therapy (Reactine, Famotidine, Ketotifen) for 2 months and the symptoms have greatly decreasedIn context ↗ | Not stated | Ketotifen (Zaditen) |
| 2026 | crashed after stopping MCAS triple therapyended up getting off all of it after several months due to having a slight increase in quality of life, only to crash terribly againIn context ↗ | Moderate | |
| 2026-10-16 | worse than ever, on medical leave almost a yearIve been worse then I've ever been after a full medical collapse and been on medical leave for almost a yearIn context ↗ | Moderate |
Symptoms mentioned
Their words about their symptoms
- Mast cell (MCAS) & allergies
I was diagnosed with me/cfs, Long covid, Fibromyalgia and MCAS
In context ↗
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