Moderate ME/CFS for 20-30 years, somewhat better with dextromethorphan and rapamycin
- Condition
- ME/CFS
- At worst
- Moderate (mostly housebound)
- Ill before improving or writing
- 25 years
- Last post
- May 2025
In their words
- Condition: ME/CFS
Recommended by my ME/CFS physician
In context ↗ - At worst: Moderate
I have a moderate case, sick for the last 20-30 years.
In context ↗ - Now: Somewhat better
My physical energy levels are notably higher, maybe by 10-20%. ... Life is still hard, and I'm jealous and angry every day at what I can't do.
Read from 14 of their posts and comments; links to the 12 this page draws on
Summary
They fell ill as a teenager and at 42 described a moderate case lasting 20-30 years, with a wife and three children. Dextromethorphan helped them sleep and eased PEM, oxaloacetate at 1300 mg daily raised their physical energy by maybe 10-20%, and rapamycin in a clinical trial gave measurable gains in energy and mental clarity, though it raised cholesterol and blood sugar. Taking ubiquinol with rapamycin made a noticeable difference, though neither alone was very helpful.
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What they tried
What they credit
Also tried
Their words about each treatment
- guanfacine · Worse
Me too. Just terrible. I felt like I'd been poisoned
In context ↗ - Dextromethorphan · Helped
I take a 15mg tablet before bed and it's very consistently helpful
In context ↗ - oxaloacetate · Helped
I see a benefit from 1300mg daily, front-loaded in the morning
In context ↗ - managing my energy · Helped
Age has given me a better perspective and more ability to manage my energy
In context ↗ - sirolimus/rapamycin · Helped
I have a noticeable and measurable improvement in my physical energy and mental clarity
In context ↗ - stem cell injections · No change
I've tried stem cell injections into the ligaments between C0-C2, twice, without any benefit
In context ↗ - nerve blocks · No change
I've also done nerve blocks, but without any lasting impact
In context ↗ - ubiqinol · Helped
Neither was super helpful for me alone, but both together make a noticable difference
In context ↗ - Benzodiazepines (unspecified) · Not said
But I like dextro better than the benzos--less drowsiness, I find
In context ↗
Approaches: Other drugs and medicines · Pacing · Supplements
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 25 years 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 | After |
|---|---|---|---|
| as a teenager | fell ill as a teenagerI got sick as a teenager too.In context ↗ | Not stated | |
| 2024-03-31 | dextromethorphan at night improved sleep and reduced PEMIt helps me enormously with sleep and it's cheap and safe if you're taking 1-2 caps.In context ↗ | Moderate | |
| 2024-04-13 | oxaloacetate gave higher physical energyMy physical energy levels are notably higher, maybe by 10-20%.In context ↗ | Moderate | Oxaloacetate |
| 2024-10-31 | rapamycin in a clinical trial improved energy and mental clarityI have a noticeable and measurable improvement in my physical energy and mental clarity.In context ↗ | Moderate | Rapamycin / sirolimus |
| 2025-05-28 | ubiquinol added to weekly rapamycin gave a noticeable differenceNeither was super helpful for me alone, but both together make a noticable difference.In context ↗ | Moderate | CoQ10 / ubiquinol |
Adverse events
- Guanfacine, NAC (N-acetylcysteine)“Me too. Just terrible. I felt like I'd been poisoned” In context ↗ Side effects
- Oxaloacetate“It was hard to tolerate at first” In context ↗ Side effects
- Oxaloacetate“Later than that and it interferes with my sleep.” In context ↗ Insomnia from treatment
- Oxaloacetate“caused brain fog and an inability to sleep” In context ↗ Made symptoms worse
- Oxaloacetate“caused brain fog and an inability to sleep” In context ↗ Insomnia from treatment
- Benzodiazepines (unspecified)“But I like dextro better than the benzos--less drowsiness, I find” In context ↗ Side effects
- Dextromethorphan (DXM)“It can cause fatigue, but I find it's the good kind” In context ↗ Side effects
- Dextromethorphan (DXM)“it can make it harder to climax (and can lower your sex drive)” In context ↗ Side effects
- Rapamycin / sirolimus“I had some mild side effects early on (mouth sores, fatigue)” In context ↗ Side effects
- Rapamycin / sirolimus“my cholesterol and blood sugar have gone up, requiring additional meds to manage those blood levels back to a healthy place.” In context ↗ Other
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
Dextromethorphan has helped me a lot with PEM.
In context ↗ - Brain fog
caused brain fog and an inability to sleep
In context ↗ - Sleep problems
It helps me enormously with sleep
In context ↗
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