Bedridden with ME/CFS at worst, now much better with spironolactone and mould treatment
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 12 years
- Last post
- Jan 2023
In their words
- Condition: ME/CFS
I have CFS (likely EBV-induced)
In context ↗ - At worst: Severe
after three years of being incredibly sick and often fully bedridden
In context ↗ - Now: Much better
I am 75% recovered
In context ↗ - Began after: glandular fever or EBV
I have CFS (likely EBV-induced)
In context ↗
Read from 21 of their posts and comments; links to the 15 this page draws on
Summary
He had CFS for about 12 years, likely EBV-triggered, and was mostly bedridden for months after a 2020 relapse that followed caffeine and supplement experiments. Spironolactone lowered his EBV markers, and a CIRS/mould treatment programme with slow detox and gut work brought him back to exercising, working and socialising. He rated himself about 75% recovered and still in treatment.
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What they tried
What they credit
Also tried
Their words about each treatment
- klonopin · Not said
I’m 32M and have been taking klonopin for about 5 years, 1mg per day up until 6 months ago where I increased to 1.5-2mg per day
In context ↗ - neural retraining therapy · Helped
I tried neural retraining therapy initially ... it only helped me slightly
In context ↗ - different diets · Not said
trying different diets, etc
In context ↗ - L-Carnitine · Worse
recently I tried a high dose of L-Carnitine (about 5 grams) and had an extremely bad reaction
In context ↗ - Arginine, Citrulline, and Ornithine · Not said
Supplementing Arginine, Citrulline, and Ornithine to test correcting a possible ammonia clearing issue.
In context ↗ - spironolactone · Helped a lot
4 months of spiro have changed my positive EBV PCR tests to negative tests
In context ↗ - CIRS treatment · Helped a lot
I went from mostly bedridden for months to now being highly functional after diagnosing CIRS and getting on a treatment program
In context ↗ - binder · Helped
When I went on a binder the dose was way too high and it made everything worse. However once I got that dialed in at a level I could handle, I slowly felt like I was less "inflammed"
In context ↗ - gentle detox program · Helped
the fatigue and brain issues didn’t improve until I started a gentle detox program
In context ↗ - high-dose phospholipids · Helped
started a few specific supplements like high-dose phospholipids
In context ↗ - Synapsin nasal spray · Helped
Synapsin nasal spray for the neuro inflammation allowed me to get off of klonopin completely
In context ↗ - prednisone · Not said
I also had to take prednisone during covid which probably didn’t help the EBV
In context ↗ - valacyclovir · Worse
I tried valacyclovir but just couldn’t tolerate the mental side effects I got from it
In context ↗ - Flu vaccine · Worse
I have avoided getting the flu vaccine since coming down with CFS because I found it triggered my symptoms quite a bit.
In context ↗
Approaches: Hormones & thyroid · Mould avoidance · Supplements
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 chart starts 11.2 years after onset: the story doesn’t say how ill they were before that. 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 |
|---|---|---|---|
| about 12 years before 2021 | CFS begins, likely EBV-triggeredI’ve had CFS for about 12 yearsIn context ↗ | Not stated | |
| Summer 2020 | doing great and running regularlyOver the summer I was doing great and running regularlyIn context ↗ | Near normal | |
| September 2020 | crashed after caffeine into severe muscle weaknessThe crash initially happened two months ago when I had some caffeine and it sent me into an episode of severe muscle weaknessIn context ↗ | Severe | |
| 2020-11-10 | relapse steadily worsening, hospitalised twiceI’ve been hospitalized twice in the last two daysIn context ↗ | Severe | |
| March 2021 | doing notably better on spironolactoneYes I am doing notably better than when I started the spiro treatment 5 months agoIn context ↗ | Severe | |
| 2021-04-08 | much worse cognitive issues, landed in the ERThe last few weeks however I have had much, much worse cognitive issues, that even landed me in the ERIn context ↗ | Severe | |
| 2022-03-01 | highly functional after CIRS diagnosis and treatmentI went from mostly bedridden for months to now being highly functional after diagnosing CIRS and getting on a treatment programIn context ↗ | Near normal | Mold avoidance / CIRS protocol |
| 2023-01-14 | 75% recovered, exercising, working and socialising, still in treatmentI am 75% recovered and maybe can share some useful infoIn context ↗ | Mild | Mold avoidance / CIRS protocol |
Adverse events
- L-carnitine“I tried a high dose of L-Carnitine (about 5 grams) and had an extremely bad reaction (sensory disruption, extreme anxiety, extreme muscle weakness, attacks of severe vertigo) that lasted for about 12 hours” In context ↗ Side effects
- Spironolactone“At first I tried taking 500mg and it caused an absolutely awful panic attack.” In context ↗ Mood or psychiatric effects
- L-carnitine“Also taking an accidental dose of 8g L-Carnitine which caused a major flare up of symptoms.” In context ↗ Made symptoms worse
- Flu vaccine“I have avoided getting the flu vaccine since coming down with CFS because I found it triggered my symptoms quite a bit.” In context ↗ Made symptoms worse
- Brain retraining programs (DNRS, Gupta, ANS Rewire, Primal Trust)“I became significantly more sick when I initially started the treatment because it caused a toxin overload in my body” In context ↗ Made symptoms worse
- Binders (cholestyramine, clays)“When I went on a binder the dose was way too high and it made everything worse.” In context ↗ Made symptoms worse
- Valtrex / valacyclovir“I tried valacyclovir but just couldn’t tolerate the mental side effects I got from it” In context ↗ Mood or psychiatric effects
Symptoms mentioned
Their words about their symptoms
- Brain fog
I know CFS can cause “brain fog” which I’ve had the entire time I’ve had CFS
In context ↗ - Muscle weakness
extreme muscle weakness
In context ↗ - Anxiety & low mood
extreme anxiety
In context ↗ - POTS & dysautonomia
attacks of severe vertigo
In context ↗ - Light & noise sensitivity
sensory disruption
In context ↗ - Gut problems
now I’m addressing gut issues which has been going very well
In context ↗
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