Moderate ME/CFS with POTS and MCAS, improved on thiamine then relapsed
- Condition
- ME/CFS
- At worst
- Not stated
- Ill before improving or writing
- Not stated
- Last post
- Oct 2026
In their words
- Condition: ME/CFS
I have moderate CFS, with POTS and MCAS
In context ↗ - Now: Relapsed
I started with moderate... got to mild (80% remission) and now am back in moderate again.
In context ↗
Read from 7 of their posts and comments; links to the 7 this page draws on
Summary
Oak 99388 first had orthostatic intolerance and low-moderate CFS, then a remission of five to six years that they called feeling recovered. They were back to moderate CFS by 2025 and reported POTS and MCAS. High-dose thiamine helped immensely in 2025. In 2026 they began trialling a treatment, which worsened sleep and caused digestive upset.
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What they tried
What they credit
Also tried
Their words about each treatment
- Low Doses Naltrexone · Helped
It was pretty much all about Low Doses Naltrexone. Which I might now increase.
In context ↗ - high-dose thiamine · Helped a lot
Have you tried high-dose thiamine. It has been helping me immensely
In context ↗ - Boluoke lumbrokinase · Not said
I do take I Boluoke lumbrokinase which eventually I will try eliminating as well.
In context ↗ - many other supplements · Not said
the many other supplements that I had been taking
In context ↗ - 5-htp · Worse
I developed serotonin syndrome from taking LDN (a common CFS medication) and 50 mg of 5-htp, a very low dose.
In context ↗ - Eye yoga · Helped
Eye yoga has helped me.
In context ↗ - Oxaloacetate · Worse
I'm trialing it, just started a week ago. ... It seems to be negatively impacting my sleep and is causing a bit of digestive upset
In context ↗
Approaches: Mind-body practices · Supplements
Their path
How ill they were on the ME/CFS severity scale, estimated from what they describe at each point, in the order they describe; they don’t give enough times to place each step. Hover or tap a point. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| — | onset of CFS with orthostatic intoleranceI originally had OI and low moderate CFSIn context ↗ | Moderate | |
| — | remission lasting several yearsgot to mild (80% remission)In context ↗ | Mild | Low-dose naltrexone |
| 2025-08-23 | out of remission, back to moderate CFSand now am back in moderate againIn context ↗ | Moderate | |
| 2025-08-27 | high-dose thiamine helping immenselyHave you tried high-dose thiamine. It has been helping me immenselyIn context ↗ | Moderate | Thiamine / benfotiamine |
| 2026-10-07 | trialling oxaloacetate; worse sleep and digestive upsetI have moderate CFS, with POTS and MCASIn context ↗ | Moderate |
Adverse events
- Low-dose naltrexone“Yes, I developed serotonin syndrome from taking LDN (a common CFS medication) and 50 mg of 5-htp, a very low dose.” In context ↗ Side effects
- Low-dose naltrexone, 5-HTP“I developed serotonin syndrome from taking LDN (a common CFS medication) and 50 mg of 5-htp, a very low dose.” In context ↗ Side effects
- Oxaloacetate“It seems to be negatively impacting my sleep and is causing a bit of digestive upset, but I'll keep with it, as these things may well pass.” In context ↗ Insomnia from treatment
- Oxaloacetate“is causing a bit of digestive upset, but I'll keep with it, as these things may well pass.” In context ↗ Gut side effects
Symptoms mentioned
Their words about their symptoms
- Mast cell (MCAS) & allergies
I have moderate CFS, with POTS and MCAS
In context ↗
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