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ME/CFS Severe → much better

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: SevereI was on LDN for about a year and extremely serve. Never felt any better and came off it. In context ↗
  • Now: Much betterI 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 nameOriginally 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

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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

Their words about each treatment
  • supplements · Not saidI've tried basically every supplement on the planet and had luck. In context ↗
  • Ozone Therapy · WorseI've also done Ozone Therapy, HBOT, Infared Saunas and that all made me worse / crash. In context ↗
  • Sauna / Infared Saunas · Much worseSauna 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 changeI've tried antihistamines (Zyrtec, Pepcid, Allegra) in the past without much obvious improvement. In context ↗
  • H2 blockers (Pepcid) · No changeit was a lot of H1 / H2 blockers but didn’t have any luck In context ↗
  • prednisone · WorseWe did some prednisone and that made me feel really weird and I hated it. In context ↗
  • testosterone · No changeHe was really into testosterone as a treatment and I did that for a while, but never felt any different. In context ↗
  • LDN · WorseI must have been sensitive because it was only after stopping it did I realize it was hurting and not helping. In context ↗

Their path

Very severeSevereModerateMildNear normalRecovered

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
WhenWhat happenedWhere they wereAfter
onsetillness 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
2025-12-11felt better after coming off LDN and other medicationsI recently came off of it and I feel alot better. In context ↗ModerateLow-dose naltrexone
2026-08-25crash of 2-3 weeks after overdoing itLast crash was about 2-3 weeks and felt like I may die. In context ↗Severe
2026-10-17more 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

Symptoms mentioned

Their words about their symptoms
  • Post-exertional malaiseThese symptoms get worse when I’m run down or if I push too hard. In context ↗
  • Flu-like symptomsI get this cluster of symptoms that feels like a mini flu flare in my head/face In context ↗
  • Headaches & migraineConstant headache / head pressure In context ↗
  • Temperature regulationFever aches / chills (but no fever) In context ↗
  • POTS & dysautonomiaOriginally everything started with dizzy, fatigue, zoned out feeling In context ↗

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