Severe brain fog with ME/CFS, now recovered after mould remediation and cholestyramine
- Condition
- ME/CFS
- At worst
- Moderate (mostly housebound)
- Ill before improving or writing
- 18 years
- Last post
- May 2023
In their words
- Condition: ME/CFS
I’ve got diagnosised with everything, narcolepsy, then idiopathic hypersomnia, then CFS
In context ↗ - At worst: Moderate
my memory was garbage, poor executive functioning, severe ADHD, anxiety, depression, deep muscular pain, debilitating brain fog, untreatable fatigue
In context ↗ - Now: Recovered
But I’m cured now. Like my life is back. But better than it ever was.
In context ↗ - Began after: another virus
I had a virus a few years prior, I was told it was mono, and then that came back negative. But that’s when the chronic fatigue started.
In context ↗
Read from 4 of their posts and comments; links to the 4 this page draws on
Summary
Tern 18258 dates their chronic fatigue to a virus a few years before a 2007 narcolepsy diagnosis, later adding idiopathic hypersomnia and cognitive decline. In 2020, after moving into a mouldy home, a vaccine and Covid, they worsened badly, with severe brain fog, muscle pain, anxiety and untreatable fatigue. Mould remediation, cholestyramine and a no-amylose diet followed; by May 2023 they called themselves cured.
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What they tried
What they credit
Also tried
Their words about each treatment
- CBD oil · Worse
I was taking 100-200mg CBD daily and I am also working on the theory that this has led to chronic levels of fatigue
In context ↗ - CBG · Worse
At first I also thought it was less sedating and helped with pain.
In context ↗ - Adderall · No change
My Adderall completely stopped working about 3 weeks ago.
In context ↗ - SSRI · Not said
I’m also on an SSRI, which mostly binds to 5HT-2a
In context ↗ - nootropic supplements · No change
The brain fog has been unreal. No nootropic supplement would help.
In context ↗ - powerful anti-inflammatory supplements · Helped
every time I tried a powerful anti-inflammatory, it would change things for like 2-4 weeks and I would get bad again.
In context ↗ - mould remediation and CIRS treatment with Dr. Shoemaker's approach · Helped a lot
Remediated the mold in my environment and began treatment.
In context ↗ - Cholestyramine · Helped a lot
Taking Cholestyramine to help remove the toxins
In context ↗ - no-amylose diet · Helped a lot
removing the inflammation by cutting our all added sugar and amylose
In context ↗ - COVID vaccination as treatment · Worse
The vaccine made me worse, Covid made me worse.
In context ↗
Approaches: Diet · Mould avoidance · Other drugs and medicines
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 15 years after onset: the story doesn’t say how ill they were before that. 2 steps say too little to place on the scale and are only in the table. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| ~2005 | chronic fatigue began after a virusI had a virus a few years prior, I was told it was mono, and then that came back negative. But that’s when the chronic fatigue started.In context ↗ | Not stated | |
| 2020 | life came crumbling down after moving into a mouldy home, vaccine and CovidAnd then my life came crumbling down in 2020In context ↗ | Moderate | |
| 2022-03 | chronic tiredness and brain fog worsened while on high-dose CBD and CBGfor the last 4 months I’ve been chronically tired. And only getting worse by the week.In context ↗ | Not stated | |
| 2023-05-21 | mould remediation, cholestyramine and no-amylose dietBut I’m cured now. Like my life is back.In context ↗ | Recovered | Mold avoidance / CIRS protocol |
Adverse events
- CBD (cannabidiol)“I upped it to 100-200mg a day and for the last 4 months I’ve been chronically tired. And only getting worse by the week.” In context ↗ Made symptoms worse
- CBG (cannabigerol)“I too was taking excess of 100mg a day and I have been in a state of seriously chronic fatigue, on top of my narcolepsy.” In context ↗ Made symptoms worse
- COVID vaccination as treatment“The vaccine made me worse, Covid made me worse.” In context ↗ Made symptoms worse
- “every time I tried a powerful anti-inflammatory, it would change things for like 2-4 weeks and I would get bad again.” In context ↗ Made symptoms worse
Symptoms mentioned
Their words about their symptoms
- Brain fog
debilitating brain fog
In context ↗ - Pain & fibromyalgia
deep muscular pain
In context ↗ - Anxiety & low mood
severe ADHD, anxiety, depression
In context ↗ - Sleep problems
I’ve got diagnosised with everything, narcolepsy, then idiopathic hypersomnia
In context ↗
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