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. If you follow the link and make a purchase, I might make a commission.

Prescribed medications

  • Present
    • Valaciclovir (Valtrex) – 1g 3x/day
    • Montelukast – 10mg 1x/day
      • Unclear benefit
    • Glutathione nasal spray – 100mg/ml 2x/week
  • Past
    • Famciclovir (Famvir)
    • Valganciclovir (Valcyte)
    • Gastrochrome
    • Minocycline
    • Nystatin

Supplements

  • B6 Pyridoxal-5-Phosphate (P-5-P) – 50mg 2x/day
    • Energy, lower heart rate
  • B9 (folate/folic acid for most people, special L-methylfolate for me)
    • Unclear benefit
  • B12 Methylcobalamin – sublingual 5000mcg/day
    • Unclear benefit
  • Coq10 – 100mg 2x/day
    • Energy
  • High-CBD marijuana – as needed for pain
    • Doesn’t work against fatigue or weakness.
  • Acetyl-L-Carnitine – 500mg 2x/day
    • Unclear benefit
  • Miyarisan, Strong variety – 1 pill 2-3x/day
    • Amazing treatment for Irritable Bowel Syndrome
    • I order it on eBay.
  • General, multi-strain probiotic – occasionally instead of Miyarisan
    • For IBS
  • Phosphatidylserine – 100mg 2x/day
    • Unclear benefit
  • Melatonin – 3mg/day
    • For Periodic Limb Movement Disorder, aka “restless legs”
  • Citicoline – 250mg 2x/day
    • Unclear benefit
  • Selenium – 200mcg/day
    • Unclear benefit
  • R-Lipoic acid – 100mg/day
    • Energy, lower heart rate
  • Benfotiamine – 300mg/day
    • Energy, lower heart rate

Didn’t work for me, but I might retry

Stopped due to side effects

  • Inosine – 500mg
    • Unclear benefit
    • Developed gout while taking 2x/day and then again while taking it every other day. Plus, I think it made me wake up to urinate.
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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?

    Like

    • 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.

      Like

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