ME/CFS
Moderate → no benefitIll for 1 yearNeeds ongoing treatment
Unable to work and mostly at home with ME/CFS, no better after low-dose naltrexone
- Condition
- ME/CFS
- At worst
- Moderate (mostly housebound)
- Ill for
- 1 year
- Last post
- Jan 2019
In their words
- Condition: ME/CFS
I'm 'textbook CFS' as my doctor says haha
In context ↗ - At worst: Moderate
Moderately affected. Can't work, mostly chill at home, etc.
In context ↗ - Now: No benefit
But overall my condition is pretty stable!
In context ↗ - Began after: another virus
The trigger point for me was a GI virus.
Read from 22 of their posts and comments; links to the 12 this page draws on
Summary
A person became ill after a GI virus and never returned to normal, going from running six miles to struggling with two. Long-term antibiotics preceded a crash they never recovered from, and by late 2018 they could not work and were mostly at home, with dizziness on standing and one crash spent 23 hours a day in bed. Low-dose naltrexone improved their sleep and they called their condition stable.
Ask Miruvor AI
What they tried
Also tried
Their words about each treatment
- AIP/modified AIP · Worse
I've been on AIP/modified AIP since Febuary with only worsening of my condition
In context ↗ - antibiotics · Much worse
I took em for 8ish weeks. Fucking antibiotics!!!!
In context ↗ - steroids · Worse
didn't respond well to steroids at all when I took a course earlier this year
In context ↗ - carnivore · Worse
I'm doing carnivore right now and am 2.5 weeks in and more fatigued than usual.
In context ↗ - increased salt intake · Helped
I'm trying to increase my salt intake the past day and feel it may be working a bit.
In context ↗ - LDN · Helped
Helped me a lot with increased sleep quality. Less waking up during the night.
In context ↗ - Alinia · Not said
I took alinia so it should be gone.
In context ↗ - Valcyte · Not said
Started Valcyte nearly a month ago and hoping for some improvement!
In context ↗ - coffee (caffeine) · Helped
It keeps me more mentally alert and i just love the taste. Makes my days a bit better!
In context ↗
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. The first step with a time is 8 months after onset: the story doesn’t say how ill they were before that. The dashed part: the story doesn’t say when. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| 2018 | crashed on long-term antibiotics and never recoveredThen it kinda kept dropping, until I took antibiotics long term, crashed and havnt recovered.In context ↗ | Moderate | Antibiotics (unspecified) |
| September 2018 | terrible crash spent 23 hours a day in bedLast month I had a terrible crash where I spent 23 hours a day in bed and that was truly difficult mentally.In context ↗ | Very severe | |
| December 2018 | stable, not working, mostly at homeBut overall my condition is pretty stable!In context ↗ | Moderate |
Adverse events
- Elimination diets (other), Carnivore diet“I've been on AIP/modified AIP since Febuary with only worsening of my condition ... I'm doing carnivore right now and am 2.5 weeks in and more fatigued than usual.” Made symptoms worse
- Antibiotics (unspecified)“Then it kinda kept dropping, until I took antibiotics long term, crashed and havnt recovered. ... antibiotics seemed to have permanently lowered my baseline” Made symptoms worse
- “I went 2 months down that hole and ended up much worse for it. :/ The charlatans got me :(” In context ↗ Made symptoms worse
- Low-dose naltrexone“Experienced some mild side effects like achiness, mood changes, insomnia, and vivid dreams but nothing major and all side effects have went away.” In context ↗ Side effects
- Low-dose naltrexone“Experienced some mild side effects like achiness, mood changes, insomnia, and vivid dreams” In context ↗ Insomnia from treatment
Symptoms mentioned
Their words about their symptoms
- POTS & dysautonomia
OI has become much more of an issue in the past few weeks. Much dizzier than usual when standing/sitting up.
In context ↗ - Sleep problems
Helped me a lot with increased sleep quality. Less waking up during the night.
In context ↗