ME/CFS: My medications and supplements

Finding and affording a specialist for myalgic encephalomyelitis (aka chronic fatigue syndrome) is difficult, and the two I’ve consulted have different approaches. So I thought I’d share some of my experience.

Hopefully, the following list will help other people with the disease. Each item is on it due to either a doctor’s recommendation or a research finding.

Other patients swear by a different set. Also, I’m not convinced that everything I take makes a significant difference, so I’ve labeled the dubious ones with “unclear benefit.” The links are to the products that, after much research, I take.

Prescribed medications

  • Present
    • Valganciclovir (Valcyte) – 450 mg/day
      • See this post for my regimen and experience on Valcyte.
    • Montelukast – 10mg 1x/day
      • Unclear benefit
    • Glutathione nasal spray – 100mg/ml 1x/day
      • Unclear benefit
      • Two sprays/day causes brain fog
    • Naltrexone (aka ultra low-dose naltrexone, or LDN) – .5mg/day
      • Taking it with my supplements at breakfast seems to negate its effect, so I take it later in the day.
    • Pyridostigmine (Mestinon) – 60 mg 1x/day for 1 week, then 2x/day
  • Past
    • Famciclovir (Famvir)
    • Valaciclovir (Valtrex)
    • Gastrochrome
      • Reduces IBS, instantly increases heart-rate variability (which is good)
      • Expensive and burdensome to take
    • Minocycline
    • Nystatin
    • Cyproheptadine
      • Worked great but even 1/3 dose caused more than 24 hours of strong lightheadedness.

Supplements

  • Magnesium glycinate – 200 mg, as needed
    • Amazingly effective treatment for “restless legs” (officially, Periodic Limb Movement Disorder)
    • I wait until I wake up with restless legs to take this; currently, it’s once every 3-6 days.
  • B6 Pyridoxal-5-Phosphate (P-5-P) – 50mg / 2 days
    • Energy, lower heart rate
    • Warning: too much B6 can cause neuropathy
  • B9 (folate/folic acid for most people, special L-methylfolate for me) – 7000 mcg/day
    • Reduces problem with expanding my chest to breathe
  • B12
    • Methylcobalamin – sublingual 5000mcg 1x / 2 days
    • Hydroxocobalamin – sublingual 1 mg 1x / 2days
    • Unclear benefit
  • Coq10 – 100mg/day
    • Energy
  • High-CBD marijuana – as needed for pain
    • Doesn’t work against fatigue or weakness.
  • General, multi-strain probiotic – 1x/day
    • For IBS
  • R-Lipoic acid – 100mg/day
    • Energy, lower heart rate
  • Benfotiamine – 250mg/day
    • Energy, lower heart rate
  • Selenium – 200mcg/2 days
    • Higher threshold for post-exertional malaise (PEM), easier breathing
  • Acetyl-L-Carnitine – 500 mg/day
  • Calcium citrate & vitamin D3 – 200 mg of calcium & 250 IU of D3/day
  • Zinc picolinate– 22 mg/2 days
    • Greatly reduced the ‘phantom’ pain I experience with PEM

Worked, but replaced

  • Miyarisan, Strong variety – 1 pill 2x/day
    • Amazing treatment for Irritable Bowel Syndrome
    • I ordered it on eBay.
  • Melatonin – 5mg/day
    • For Periodic Limb Movement Disorder, aka “restless legs” (LDN does it better)
  • Magnesium sulfate (1 ml) and taurine (1 ml), intramuscular injection, 2x/week
    • Lower heart rate
  • Magnesium orotate –  200mg 2x/day
    • Greatly reduced the ‘phantom’ pain I experience with post-exertional malaise (PEM), but orotic acid causes genetic mutations in experiments.

Didn’t work for me

  • Cinnamon
    • Tested twice
  • NADH
    • Tested twice
  • Citicoline
    • Unclear benefit
  • Inosine – 500mg/day
    • Developed gout while taking 2x/day and then again when I restarted at a lower dose. Plus, I think it made me wake up to urinate.
    • No ill effects when I stopped taking it.
  • Phosphatidylserine
    • Unclear benefit
  • Lysine
    • Tested twice
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2 responses to “ME/CFS: My medications and supplements

  1. Wow – that’s a lot of supplements! How do you know they’re not interacting with one another in unexpected ways?

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    • 1) Research! Plus, I share the list with each doctor I visit. 2) A single multivitamin pill might have 20 vitamins and minerals, and then there are the various nutrients in the food each person eats, so the question is a common one. 3) Sometimes, they’re believed to interact in unexpected but beneficial ways – for example, carnitine, thiamine, and lipoic acid. 4) Ultimately, it would require a lot of careful experimentation with different combinations, so I can’t be sure.

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