ME/CFS: My medications, supplements, and other therapies

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. (I’ve probably failed to include some things that didn’t work.) 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 2x/wk
    • See this post for my regimen and experience on Valcyte.
  • Montelukast
    • Helps against hives
  • Naltrexone (aka ultra-low-dose naltrexone, or LDN) – 5 mg/day
  • Subcutaneous immunoglobulin (SCIG) – IVIG previously
  • Lipitor (atorvastatin)
  • Midodrine
  • Desmopressin
• Past
  • Pyridostigmine (Mestinon)
  • 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 and other therapies

• 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
  • 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
• Vitamin K – through lettuce or other veggies
  • Surprisingly vital for energy
• Fexofenadine – only antihistamine that doesn’t make me drowsy and/or dizzy
• Plasmalogen – 2 pills at night
  • 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.
• L-Citrulline
• Hyaluronic acid
• Dextromethorphan – as needed for PEM but no more than 15 ml/day
• Sauna – 15 min/day
  • Helps with circulation and heat-shock proteins
• Box breathing – 10 min/day, 10 sec each of breathing in, holding, breathing out, and holding

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
• Oxaloacetate
  • Expensive, and effect wore off

Didn’t work for me

• Nurosym vagal stimulator – used religiously for two months, with no evident effect
• Collagen, Type II, hydrolyzed – 500 mg 3x/day
• 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