ME/CFS with ten minutes of energy a day now nearly normal after elimination and detox diet
- Condition
- ME/CFS
- At worst
- Moderate (mostly housebound)
- Ill before improving or writing
- 4 years
- Last post
- Jun 2025
In their words
- Condition: ME/CFS
Hubby and I both suffer CFS for four years now.
In context ↗ - At worst: Moderate
the zero energy thing and inability to do any real physical work
In context ↗ - Now: Near normal
were able to make it go away ... But something feels not quite 100%
- Began after: mould or toxic exposure
if I get re-exposed to mold (which set this whole nightmare off five years ago)
Read from 38 of their posts and comments; links to the 17 this page draws on
Summary
After a year of mould exposure and a virus they developed CFS around 2015, spending four years with roughly ten minutes of energy a day and unable to do physical work. An antiviral, LDN, Mestinon, growth hormone and supplements didn't fix the problem. In 2020 three weeks of a strict elimination and detox diet with their husband cleared all their symptoms; five years on they are active all day but feel not quite 100%. COVID in 2024 caused no relapse.
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What they tried
What they credit
Also tried
Their words about each treatment
- coQ10 · Not said
Love coQ10! But I had been taking that before I got sick.
In context ↗ - collagen · Not said
Just like collagen.
In context ↗ - getting out of the mouldy building · Helped
Once we got out of the moldy environment, the autoimmune symptoms eased (but still flare up at times).
In context ↗ - saunas (bought one) · Not said
did the detox thing (any/everything) from supplements, diets, saunas (bought one), lymph massage, green coffee enemas, CSM and every possible binder ever mentioned on the internet
In context ↗ - supplements · Not said
from supplements, diets, saunas (bought one), lymph massage, green coffee enemas, CSM and every possible binder ever mentioned on the internet
In context ↗ - apple cider vinegar · Helped
within two hours, the biggest sign that mold had taken over my body had ceased and has never returned
In context ↗ - natural probiotic nasal spray · Helped
But lo and behold, on the third day, I did something I hadn’t done in the two years since we had been invaded by the mold. I sneezed.
In context ↗ - gym exercise · Much worse
We kept making the mistake of rejoining the gym every time we had a good spell and within two weeks had set ourselves back to square zero and had to quit.
In context ↗ - avoiding exercise and keeping to a normal daily routine · Not said
We now just try and be as active in a normal daily routine as necessary but striving for fitness is no longer a goal.
In context ↗ - cigarettes · Helped
When in I smoke, my feet feel alive (less like a club attached to my leg), my joints stop hurting, I can walk, and have higher spirits.
In context ↗ - valocyclomir · No change
Did the full course of valocyclomir with zero improvement.
In context ↗ - mestinon · No change
I’ve done mestinon, low dose naltrexone (or whatever it’s called) and even human growth hormone injections. I’m a virtual test lab! Nothing moved the needle!
In context ↗ - low dose naltrexone · No change
Tried it. Zero effect for me.
In context ↗ - keto diet and three-week detox protocol · Helped a lot
It took three weeks of lifestyle modification to let our systems reset and begin functioning normally.
In context ↗ - slow deep breathing · Helped
Definitely have the same thing. Slow deep breathing often calms it down for me.
In context ↗
Approaches: Diet
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 4 years after onset: the story doesn’t say how ill they were before that. 1 step has no time and sits in story order between the steps around it. 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 |
|---|---|---|---|
| 2015 | CFS set in on the fifth day of a virus after a year of mould exposure at workwe caught a nasty virus just before we got out and on the 5th day, something snapped within us and CFS set in.In context ↗ | Not stated | |
| 2019-11 | four years of CFS with about ten minutes of energy a day and no capacity for physical workthe thing that kills us is the exercise intolerance- the inability to exert ourselves or do physical work.In context ↗ | Moderate | |
| 2019-12 | crashed back to square zero after rejoining the gym and had to quitWe kept making the mistake of rejoining the gym every time we had a good spell and within two weeks had set ourselves back to square zero and had to quit.In context ↗ | Moderate | |
| 2020-04 | three weeks into a six-week detox and elimination protocol all her symptoms were goneAfter 3 weeks we stopped because we had lost all our symptoms.In context ↗ | Recovered | Keto and low-carb diets |
| 2025-06-24 | active all day five years on, but feels not quite 100%; no relapse after COVIDBut something feels not quite 100%.In context ↗ | Near normal |
Adverse events
- Probiotics and fermented foods“It kicked our butts so bad (herxing?) we could only do it a couple days in a row before we stopped.” In context ↗ Herx / die-off reaction
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
the three symptoms I cared most about (POTS, PEM, and heart palpitations) are all gone
In context ↗ - Brain fog
two foggy brains pondering pros/cons and research stuff
In context ↗ - Pain & fibromyalgia
my joints stop hurting
In context ↗ - Muscle weakness
No strength any more.
In context ↗ - Gut problems
carbs->gastric distress
In context ↗ - Temperature regulation
heat->melting into the pavement
In context ↗
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