Bedridden with ME/CFS and unable to talk, somewhat better after statins and ezetimibe
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 20 years
- Last post
- May 2026
In their words
- Condition: ME/CFS
I have had my CFS diagnosis for about 15 years
In context ↗ - At worst: Severe
Bedridden for many years, no work possible and at worst could not even talk.
In context ↗ - Now: Somewhat better
I have recovered reasonably well knowing I will always have it. Reasonably means conversations and housework possible, no fear of a relapse anymore.
In context ↗ - Began after: a bacterial or tick-borne infection
I got sick after eating oysters and never recovered.
In context ↗
Read from 35 of their posts and comments; links to the 21 this page draws on
Summary
Bedridden for many years with ME/CFS and at worst unable to talk, they had been ill about 20 years and spent years on unhelpful treatments. They credit statins for high cholesterol, ezetimibe, nattokinase/lumbrokinase, a Portfolio diet and blood thinners with a substantial improvement. They can now talk to people and do housework without fearing relapse, but cannot work or see friends and are still tired.
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What they tried
What they credit
Also tried
Their words about each treatment
- Nattokinase · Helped
I am much better since supplementing Nattokinase
In context ↗ - Rosuvastatin · Helped a lot
The Rosuvastatin is the first and only medication that REALLY helped my CFS.
In context ↗ - daily self-massage with medicated oil (Abyhanga, Thailam oil) · Helped
I partner this with a daily quick massage to break up any fibrin type, lymphatic stagnation whatever.
In context ↗ - Portfolio diet · Helped
Portfolio diet also helped in more than one way.
In context ↗ - pacing and energy boundaries · Helped
So, in a way still pacing but I think acceptance that my energy will forever be limited and that the bit of wellbeing that I do have needs to be preserved with boundaries helped.
In context ↗ - ASS100 · Worse
I was on ASS100, just gave me bruises and headaches
In context ↗ - Lumbrokinase · Helped
then on Nattokinase and Lumbrokinase
In context ↗ - Ezetimib · Helped
I am on 10 mg Rosuvastatin and 10 mg Ezetimib.
In context ↗ - Ubiquinol (CoQ10) · Not said
I take 100 mg Ubiquinol (CoQ10) with it.
In context ↗ - artichoke extract · Helped
it helps to get bile flow going (I use artichoke extract)
In context ↗ - chromium supplements · Not said
I also use something for blood sugar (chromium supplements)
In context ↗ - cutting out foods that raise blood sugar fast · Helped
cut out foods that raise blood sugar fast (bread, pasta, sweets etc)
In context ↗ - Pentoxifylline · No change
It did not help me.
In context ↗ - psycho-pharmacological drugs · No change
In my case all psycho-pharmalogical drugs were absolutely useless.
In context ↗ - anti-virals · Not said
tried plenty of anti-virals and anti-bacterials etc
In context ↗ - meditation and yoga · Worse
I regret those years in the meditation bubble very much
In context ↗ - TCM and Ayurveda · Helped
a large part of what got me out of severe included looking into TCM and Ayurveda
In context ↗
Approaches: Alternative therapies · Anticoagulants · Pacing · Statins
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 20 years after onset: the story doesn’t say how ill they were before that. The dashed part: the story doesn’t say when. 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 |
|---|---|---|---|
| onset | fell ill after eating oysters and never recoveredI got sick after eating oysters and never recovered.In context ↗ | Not stated | |
| — | bedridden for years, unable to talk or do anythingI was severe: literally unable to talk and unable to do anything. I could feed myself still though.In context ↗ | Severe | |
| 2026 | statins, ezetimibe and blood thinning therapy brought less desperate fatiguemy labs are great, my fatigue now feels less desperateIn context ↗ | Moderate | Rosuvastatin (Crestor) |
| 2026-05-09 | recovered reasonably well but still has CFS, cannot workI have recovered reasonably well knowing I will always have it. Reasonably means conversations and housework possible, no fear of a relapse anymore.In context ↗ | Moderate |
Adverse events
- Aspirin“I was on ASS100, just gave me bruises and headaches” In context ↗ Side effects
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
I have much more PEM. E.g. I drag myself out for shopping. She can still see friends for an afternoon and be tired afterwards but not like me: in bed for 3 days.
In context ↗ - Brain fog
less of that desperate brain foggy can't talk, walk or do anything fatigue
In context ↗ - Sleep problems
I felt dead, like zero refreshed and like I cannot even get up, before recovering enough
In context ↗ - Gut problems
My digestion was shockingly slow and I was up for an appointment for gastroparesis diagnostics.
In context ↗ - Temperature regulation
I also had temperature drops to 34,5 C
In context ↗ - Anxiety & low mood
I often snack to deal with the sadness of having CFS
In context ↗ - POTS & dysautonomia
On further testing they found my noradrenaline is too high and adrenaline rather low.
In context ↗
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