Extremely severe ME/CFS, much better and more stable after stopping low-dose naltrexone
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- Not stated
- Last post
- Oct 2026
In their words
- At worst: Severe
I was on LDN for about a year and extremely serve. Never felt any better and came off it.
In context ↗ - Now: Much better
I feel the LDN was the main culprit and stopping it was the reason for the improvement. ... Not good and still pretty moderate, but I’ve been convinced I was one of people who LDN couldn’t help.
- Began after: nothing they could name
Originally everything started with dizzy, fatigue, zoned out feeling and then over the years has felt more like a constant flu.
In context ↗
Read from 8 of their posts and comments; links to the 7 this page draws on
Summary
Pond 93877 had ME/CFS for years, beginning with dizziness, fatigue and a zoned-out feeling that became a constant flu-like state with headaches and chills. Exertion worsened symptoms, and a sauna caused their worst crash and a hospital visit. After about a year on low-dose naltrexone, they stopped it and felt better within a month, going from extremely severe to a more stable, moderate state, though they still crash hard after overdoing it.
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What they tried
Also tried
Their words about each treatment
- supplements · Not said
I've tried basically every supplement on the planet and had luck.
In context ↗ - Ozone Therapy · Worse
I've also done Ozone Therapy, HBOT, Infared Saunas and that all made me worse / crash.
In context ↗ - Sauna / Infared Saunas · Much worse
Sauna sent me into the worst crashes of my entire life. Literally thought I was dying and went to the hospital.
In context ↗ - antihistamines (Zyrtec, Allegra) · No change
I've tried antihistamines (Zyrtec, Pepcid, Allegra) in the past without much obvious improvement.
In context ↗ - H2 blockers (Pepcid) · No change
it was a lot of H1 / H2 blockers but didn’t have any luck
In context ↗ - prednisone · Worse
We did some prednisone and that made me feel really weird and I hated it.
In context ↗ - testosterone · No change
He was really into testosterone as a treatment and I did that for a while, but never felt any different.
In context ↗ - LDN · Worse
I must have been sensitive because it was only after stopping it did I realize it was hurting and not helping.
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 | After |
|---|---|---|---|
| onset | illness began with dizziness, fatigue and a zoned-out feeling, later a constant flu-like stateOriginally everything started with dizzy, fatigue, zoned out feeling and then over the years has felt more like a constant flu.In context ↗ | Not stated | |
| — | extremely severe, in constant PEM for about a straight year while on LDNI was on LDN for about a year and extremely serve.In context ↗ | Severe | |
| — | crashed after sauna and went to hospitalSauna sent me into the worst crashes of my entire life. Literally thought I was dying and went to the hospital.In context ↗ | Severe | |
| 2025-12-11 | felt better after coming off LDN and other medicationsI recently came off of it and I feel alot better.In context ↗ | Moderate | Low-dose naltrexone |
| 2026-08-25 | crash of 2-3 weeks after overdoing itLast crash was about 2-3 weeks and felt like I may die.In context ↗ | Severe | |
| 2026-10-17 | more stable than the constant-PEM year but still crashing hard after exertionNot good and still pretty moderate, but I’ve been convinced I was one of people who LDN couldn’t help.In context ↗ | Moderate |
Adverse events
- Ozone therapy and EBOO“I've also done Ozone Therapy, HBOT, Infared Saunas and that all made me worse / crash.” In context ↗ Made symptoms worse
- Hyperbaric oxygen (HBOT)“I've also done Ozone Therapy, HBOT, Infared Saunas and that all made me worse / crash.” In context ↗ Made symptoms worse
- Hyperthermia and sauna“I've also done Ozone Therapy, HBOT, Infared Saunas and that all made me worse / crash.” In context ↗ Made symptoms worse
- Corticosteroid pulses“We did some prednisone and that made me feel really weird and I hated it.” In context ↗ Side effects
- Low-dose naltrexone“it was only after stopping it did I realize it was hurting and not helping” In context ↗ Made symptoms worse
- Hyperthermia and sauna“Sauna sent me into the worst crashes of my entire life.” In context ↗ Made symptoms worse
- Hyperthermia and sauna“Literally thought I was dying and went to the hospital.” In context ↗ ER visit
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
These symptoms get worse when I’m run down or if I push too hard.
In context ↗ - Flu-like symptoms
I get this cluster of symptoms that feels like a mini flu flare in my head/face
In context ↗ - Headaches & migraine
Constant headache / head pressure
In context ↗ - Temperature regulation
Fever aches / chills (but no fever)
In context ↗ - POTS & dysautonomia
Originally everything started with dizzy, fatigue, zoned out feeling
In context ↗