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
    • Helps against hives
  • Naltrexone (aka ultra-low-dose naltrexone, or LDN) – 3 mg/day
  • Pyridostigmine (Mestinon) – 60 mg 1x/day for 1 week, then 2x/day
  • Lipitor (atorvastatin) – 10 mg 1x/day originally; now 1x/3 days
• 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.
  • Ketotifen
    • Worked great but even 1/2 dose caused a day or so of strong lightheadedness.
  • Glutathione nasal spray – 100mg/ml 1x/day
    • Unclear benefit
    • Two sprays/day causes brain fog
  • Hydroxychloroquine (Plaquenil) – 200 mg 1x/2days
    • Prompted dangerous thoughts
  • Metformin
    • Stopped because reduces testosterone
  • Dicyclomine
  • Ivermectin
  • Abilify
    • Worked great for a week or two, but side effects got worse and benefits decreased
  • Ritalin
  • Memantine
  • Colchicine – 0.6 mg 1x/day
    • To reduce overreaction of immune system
    • Stopped due to incessant infections
  • Guanfacine
    • Reduced sensation of fatigue, but felt like an anesthetic rather than a treatment, and it had unpleasant side effects
  • Clopidogrel
    • Helps with recovery from post-COVID problems (microclots, presumably), but no difference after

Supplements

• Magnesium citrate – 400 mg
  • Effective treatment for “restless legs” (officially, Periodic Limb Movement Disorder)
  • Much greater energy
  • Possibly works against episodic cognitive problem
• B2 – 500 mg
• B6 – 100mg / 4 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 5000mcg or Hydroxocobalamin 1 mg – 1x / 3 days
  • Unclear benefit
• Coq10 – 100mg/day
  • Energy
• R-Lipoic acid – 200mg/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
• Zinc picolinate – 22 mg/2 days
  • Greatly reduced the ‘phantom’ pain I experience with PEM
• Vitamin E – 200 IU/day
  • Reduces pain, apparently
• Vitamin C – 500 mg/day
• Vitamin D – 1800 IU
  • Not specifically for ME/CFS
• Calcium – 600 mg
  • Not specifically for ME/CFS
• Collagen, Type II, hydrolyzed – 500 mg 3x/day
• Vitamin K — through lettuce or other veggies
  • Surprisingly vital for energy
• Plasmalogen – 1 pill 2x/day
  • ProdromeGlia is expensive but greatly reduces my ‘restless legs’ while sleeping and noticeably reduces brain fog. However, the effect disappears within a day or two of stopping.
  • NeuroRegain is also expensive but did neither.

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.
• Magnesium glycinate
  • Works against periodic limb movement disorder (“restless legs”)
  • No boost in energy comparable to magnesium citrate
•  Zantac (ranitidine) – 150 mg 2x/day
  • For MCAS
  • Possibly cancer-causing
• High-CBD marijuana – as needed for pain
  • Doesn’t work against fatigue or weakness.
• General, multi-strain probiotic – 1x/day, only as needed
  • For IBS

Didn’t work for me

• Nurosym vagal stimulator – used religiously for two months, with no evident effect
•  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
• Zyrtec
  • Even 1/4 dose caused strong lightheadedness.
• Calcium citrate & vitamin D3 – 200 mg of calcium & 250 IU of D3/day
• Niacin
• Gingko
• Luteolin