ME/CFS
Moderate → no benefitIll for 21 years
Mostly housebound with ME/CFS, no benefit from maraviroc or pravastatin
- Condition
- ME/CFS
- At worst
- Moderate (mostly housebound)
- Ill for
- 21 years
- Last post
- Oct 2024
In their words
- Condition: ME/CFS
I first got ME/CFS in 2003 after being very sick from EBV + CMV.
In context ↗ - At worst: Moderate
I have ME/CFS from 2009 H1N1 and am moderate to moderate-severe, mostly homebound.
In context ↗ - Now: No benefit
Now, I am mostly housebound, but can run errands if I'm feeling better.
In context ↗ - Began after: glandular fever or EBV
after being very sick from EBV + CMV
Read from 25 of their posts and comments; links to the 15 this page draws on
Summary
Island 19264 developed ME/CFS in 2003 after EBV and CMV, improved to very mild, then worsened after swine flu in 2009 and again in 2016 after high-dose methylation supplements, leaving muscle burning. They are now mostly housebound, able to run errands on better days. Maraviroc, pravastatin, aspirin and colchicine gave no change; HBOT gave large benefits; ketogenic diet helped a little but caused electrolyte problems. Cognitive dysfunction, muscle burning, insomnia and low mood persist.
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What they tried
Also tried
HBOT· Helped a lottongue twisters· HelpedThymosin Alpha-1 peptide· Helpedintermittent fasting· Helpedmassage gun (whole-body vibration massage by a family member)· Helpedoxygen at night· Helpedketo diet· Helpedvery light exercise / stretching· HelpedPR Lotion (sodium bicarbonate lotion)· HelpedThymosin Beta· HelpedBPC157· HelpedKetotifen· No changeHGH· No changeMaraviroc· No changePravastatin· No changeAspirin· No changeColchicine· No changeLyrica (pregabalin)· Worsemethylated B12, methylfolate & adenosyl-B12· Much worsemethylated B12, methylfolate & adenosyl-B12· Much worsecarnitine· Much worseLuminosity & PositScience brain training· Not said
Their words about each treatment
- methylated B12, methylfolate & adenosyl-B12 · Much worse
Mine started all of a sudden on a single day at an exact time as a result of me taking methylation supplements: methyl-B12, methylfolate, adenosyl-B12, carnitine.
In context ↗ - carnitine · Much worse
In 2016, I took methylated B12, mfolate, & carnitine and had severe muscle aching
In context ↗ - Luminosity & PositScience brain training · Not said
I've done Luminosity & PositScience for a while.
In context ↗ - tongue twisters · Helped
For very temporary benefit, I've found that doing tongue twisters a bunch of times in a row has helped with verbal fluency.
In context ↗ - Lyrica (pregabalin) · Worse
I took Lyrica (pregabalin) for 2 weeks at the starting dose, and when I stopped (by not doing my pill-strips), I had withdrawal with hypomania, severe insomnia, hyperfocus & energy, & sweats.
In context ↗ - Thymosin Alpha-1 peptide · Helped
I also had noticeably big improvement from these symptoms after taking Thymosin Alpha-1 peptide, which felt like a lot of neuroinflammation lifted.
In context ↗ - Ketotifen · No change
I don't notice anything really from it. But I think my MCAS is very mild. And I haven't tried upping the dosage up to 8mg/day (max).
In context ↗ - HGH · No change
I tried some HGH for 3 months but just 1 or 2 units/day, but did not notice anything.
In context ↗ - Maraviroc · No change
I have been taking Maraviroc, Pravastatin, Aspirin, & Colcichine since August and no change.
In context ↗ - intermittent fasting · Helped
Fasting for 18 hours or more has been the most helpful. At my best I was fasting for 20-22 hours.
In context ↗ - massage gun (whole-body vibration massage by a family member) · Helped
I found massage helps the overall aching and cement feeling. I have someone use a massage gun over my entire body and it feels like it's flushing lymph and "old blood" out.
In context ↗ - HBOT · Helped a lot
I had large benefits with HBOT.
In context ↗ - oxygen at night · Helped
Years later, I noticed some benefit to oxygen, but I only used it at night while sleeping and at 3-4 LPM.
In context ↗ - keto diet · Helped
It helps a tiny bit for me. And helps a lot to control my weight. But after a while, it screws up my electrolytes.
In context ↗ - very light exercise / stretching · Helped
very light exercise, like the equivalent to stretching, which is me just doing more stuff around the house does seem to help a bit for me
In context ↗ - PR Lotion (sodium bicarbonate lotion) · Helped
PR Lotion (sodium bicarbonate lotion) seems to help too, but I have to use a lot.
In context ↗ - Thymosin Beta · Helped
Thymosin Alpha, Thymosin Beta, and BPC157 gave me significant relief.
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 chart starts 12 months 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 |
|---|---|---|
| 2003 | ME/CFS onset after EBV and CMVI first got ME/CFS in 2003 after being very sick from EBV + CMV.In context ↗ | Not stated |
| 2004 | recovered to very mild ME/CFSIt took about a year to "recover" to very mild ME/CFSIn context ↗ | Mild |
| 2009 | swine flu caused cognitive dysfunction and burnoutIn 2009, I got swine flu during college. Afterwards I had terrible cognitive dysfunction. I couldn't read or study.In context ↗ | Moderate |
| 2016 | methylation supplements triggered permanent muscle burningIn 2016, I took methylated B12, mfolate, & carnitine and had severe muscle aching - ever since then I've had muscle burning and can't be physically active in many ways.In context ↗ | Moderate |
| 2024-10-31 | mostly housebound but can run errands on better daysNow, I am mostly housebound, but can run errands if I'm feeling better.In context ↗ | Moderate |
Adverse events
- Pregabalin (Lyrica)“I took Lyrica (pregabalin) for 2 weeks at the starting dose, and when I stopped (by not doing my pill-strips), I had withdrawal with hypomania, severe insomnia, hyperfocus & energy, & sweats.” In context ↗ Withdrawal problems
- Vitamin B12, Methylfolate (L-methylfolate, 5-MTHF)“I took methylated B12, mfolate, & carnitine and had severe muscle aching - ever since then I've had muscle burning and can't be physically active in many ways.” In context ↗ Made symptoms worse
- Keto and low-carb diets“But after a while, it screws up my electrolytes. Or at least I can't manage them. I get worsened restless legs & need tons of Magnesium and end up having to stop keto.” In context ↗ Refeeding or deficiency problems
Symptoms mentioned
Anxiety & low moodBrain fogMast cell (MCAS) & allergiesPain & fibromyalgiaPost-exertional malaiseSleep problems
Their words about their symptoms
- Brain fog
Afterwards I had terrible cognitive dysfunction. I couldn't read or study.
In context ↗ - Post-exertional malaise
I would burn out very easily from school.
In context ↗ - Pain & fibromyalgia
had severe muscle aching - ever since then I've had muscle burning
In context ↗ - Sleep problems
insomniac at night
In context ↗ - Anxiety & low mood
Being homebound, bored, depressed & malaised, insomniac at night
In context ↗ - Mast cell (MCAS) & allergies
I think my MCAS is very mild.
In context ↗