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Posting Guidelines Edit

Drug/Supplement Names [formatted as "SUB-HEADING 1"] Edit

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  • Mechanism: How does it work? If it alters brain chemistry (like stimulants, anti-depressants, etc.), does it act on certain neurotransmitters? Does it support mitochondria function in your cells?
  • How can it help with ME/CFS or POTS or FIBRO or ETC: Does it help with sleep? day-time fatigue? brain fog? neurological pain?
  • Standard Dosage: What is the general range of dosages typically used in treatment?
  • Adverse effects: What are the notable adverse effects, both acute and chronic?
  • Did it help you:
    • Yes [User - slyCannibal]
    • No [User - petButterfly]

Supplements Edit

Acetyl-L-Carnitine Edit

  • Mechanism: Mitochondrial support - needed for ATP production. Also used in people with spinal injury, neuropathy and cardiac disease.
  • How can it help with ME/CFS or Fibro: Mitochondrial function is thought to be hampered, Supplementation can promote ATP production, providing the body with energy. Two published peer review articles [1][2]
  • Adverse effects: nil
  • Did it help you:
    • Yes - [User - osteomiss] brain fog is significantly reduced, I no longer lose words mid sentence.
    • No [User - Potato613]

Coenzyme Q10 Edit

  • Mechanism: Mitochondrial support - needed for ATP production
  • How can it help with ME/CFS or Fibro: Mitochondrial function is thought to be hampered, Supplementation with Coenzyme Q10 can promote ATP production, providing the body with energy.
  • Adverse effects: may disrupt sleep if taken in the afternoon/evening
  • Did it help you:
    • Yes - [User - osteomiss] energy level increased

Probiotics: Edit

  • see below

Fermented Foods: Edit

  • see below

5-HTP Edit

Zyflamend (anti-inflammatory) Edit

Methylgurad Plus f Edit

  • or those with MTHFR mutation

Energy/Wakefulness Edit

Amphetamine (Adderall, Vyvanse, Dexedrine) Edit

  • Mechanism: Primarily affects dopamine levels in your brain.
  • How can it help with ME/CFS or Fibro: A stimulant prescribed for ADD/ADHD typically, can help give you energy similar to use of other stimulants (nicotine, caffeine, cocaine, etc.).
  • Adverse effects: Rapid tolerance build-up. High abuse potential. Likely leads to a crash. Neurotoxic properties.

Modafinil/Provigil Edit

  • Mechanism: Unclear, likely dopamine.
  • How can it help with ME/CFS or Fibro: Prescribed for daytime fatigue, can also help with brain fog. May also help with short-term memory consolidation.
  • Standard Dosage: 50-200mg
  • Adverse effects: Potential crash. Long half-life of ~15 hours; may inhibit sleep.
  • Did it help you: Yes [User - osteomiss], but the crash at the end of the day (~8 hours after taking it) made it not worth it.

Pain Edit

Pregabalin (Lyrica) Edit

  • Mechanism: Similar to GABA in your brain, inhibitory neurotransmitter.
  • How can it help with ME/CFS or Fibro: Prescribed for neuropathic pain relief, sometimes as a sleep aid - not for falling asleep but for helping patients reach deeper stages (3/4) of sleep more easily.
  • Standard Dosage: 25mg-300mg
  • Adverse effects: Potential withdrawal symptoms.
  • Did it help you:
    • Yes [User: ozy]

Cannabis/Marijuana Edit

  • Mechanism: Your body is covered with cannabinoid receptors for pain. Analgesic properties.
  • How can it help with ME/CFS or Fibro: Neuropathic pain; increased appetite; reduced nausea/vomiting. May help induce sleep. Possibly an anti-inflammatory?
  • Standard Dosage: Depends on method of ingestion, treatment goal
  • Adverse effects: Exacerbate anxiety
  • Did it help you:
    • Yes and no [User: ozy] - good for pain, reducing nausea, helping get to sleep. Psychoactive effects were too rough for me.

Nabilone/cesamet Edit

  • Mechanism: synthetic cannabinoid, often used to suppress nausea. Mimics THC. Some evidence for use in fibromyalgia or for neuropathic pain [3]
  • How can it help with ME/CFS or Fibro: Reducing pain
  • Standard dosage: up to 6mg per day.
  • Adverse effects:sleepiness, tachycardia, hunger, dry mouth
  • Did it help you:
    • Yes [User - osteomiss]

Amatryptiline Edit

  • Mechanism: Serotonin
  • How can it help with ME/CFS or Fibro: Sleep disruption
  • Standard dosage:
  • Adverse effects: dry mouth
  • Did it help you:

Cymbalta Edit

  • Mechanism: Serotonin
  • How can it help with ME/CFS or Fibro: Sleep disruption
  • Standard dosage:
  • Adverse effects: dry mouth
  • Did it help you:

Acid Reflux/Air Hunger Edit

Note: combination of these two categories is due to the suggestion that acid reflux accounts for the air hunger, and that treatments for reflux may improve air hunger as well.

Digestive supplements

  • probiotics
    • Align
    • Fermented Foods (Kimchi, Sauerkraut)
  • prebiotics
    • Apple Cider Vinegar

Proton Pump Inhibitors Alginic acid Gaviscon

Sleep Edit

Zopiclone Edit

  • Mechanism:
  • How can it help with ME/CFS or Fibro: Helps put you to sleep, keep you asleep
  • Standard dosage:
  • Adverse effects: Addictive potential, not suggested for long-term usage ( >2 weeks)
  • Did it help you:
    • yes
    • no

Benzodiazepines (Xanax/Ativan/etc) Edit

  • Mechanism: GABA
  • How can it help with ME/CFS or Fibro: Helps put you to sleep; anxiety
  • Standard dosage:
  • Adverse effects: mild sleep-hangover. High addictive potential
  • Did it help you:
    • Yes [user - ozy]
    • Yes [user - edwag81]

Low dose trimipramine/amitryptaline (and other low dose tricyclic antidepressants) Edit

  • Mechanism: moderate serotonin reuptake inhibitor, weak norepinephrine and dopamine reuptake inhibitor. Mechanism for pain relief unknown.
  • How can it help with ME/CFS or Fibro: can help you fall asleep/stay asleep, can also relieve chronic pain.
  • Standard dosage: 12.5mg - 25mg
  • Adverse effects: sedation, dry mouth.
  • Did it help you:
    • yes [User - osteomiss]

Mental Health Edit

Selective Serotonin Reuptake Inhibitors (SSRIs) Edit

  • Mechanism:
  • How can it help:
  • Dosage:
  • Side-effects:
  • Did it help you:
    • Yes [user - guyItHelped] - extra info
    • No [ user - contraryOpinion] - extra info

Buspirone/Buspar Edit

  • Mechanism:
  • How can it help: anxiety, sleep
  • Dosage:
  • Side-effects:
  • Did it help you:
    • Yes [user - guyItHelped] - extra info
    • No [ user - contraryOpinion] - extra info

POTS-Specific Medication Edit

Mestinon (Pyridostigmine) Edit

  • Mechanism: increases nerve transmission in muscles.
  • How can it help with POTS: it could relax some veins while constricting others, hopefully the right ones so blood flow increases in the right places.
  • Dosage: started out with 2x5mg, increased by 5mg every 1 or 2 weeks, until 60mg.
  • Side-effects: Muscle cramp/pain in calves. On bad days less strength in muscles.
  • Did it help you:
    • No effect on POTS, probable positive effect on bowels (less diarrhea), but I believe it drained energy my muscles. I stopped after a few weeks, at 2x30mg, because I had no strength in my leg muscles and felt very tired. Muscle problems were definitely related to the supplement, but I'm not sure about the fatigue - I had done a lot that week. [User Potato613]


Infection Related MedicationEdit

Anti-Virals (Zovirax, Valtrex, Famvir, Valcyte) Edit

  • Mechanism: Potent inhibitor of viral DNA polymerase, interfering with viral herpes family replication
  • How can it help with ME/CFS: It decreases viral load in patients with suspected viral co-infection exhibiting high antibodies. Viral DNA may not aways be present in blood (PCR). Please refer to Lerner/Montoya Protocol.
  • Dosage: Valtrex/Famvir 3-4 times a day of 1g doses. Valcyte 450-1800mg per day (varies based on practitioner), treatment may not show improvement until 6 months.
  • Side-effects: Worsening of flu like symptoms for first 1-3 months of treatment is expected.
  • Did it help you:
    • Flu like symptoms are better, but fatigue is still significant, still 8 months into treatment, have experienced some intermittent [User edawg81]

USERS Edit

More information about Users (age group, gender, duration of disease, onset (gradual or sudden), probable reason for onset)

User - Potato613: age 20-30, female, ill for a decade, gradual onset, probably started with Lyme+mono+PTSS

User - ozy [age: 18-35; male; ill for 5 years; rapid onset]

User - osteomiss [age 30-40, female, ill for 18 years, rapid onset starting with mononucleosis)