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@profoundfatigue-Recovery

Drugs/Vaccines/Supplements taken by @profoundfatigue:

Low Dose Naltrexone 50mg prescription pills, dissolved in 2L Publix brand Diet Tonic Water.  Refrigerated for 2 weeks max. Dose 4.5 mg per day of Naltrexone.  Can take higher doses, but benefits require this low dose. Sushi on Phoenix Rising described best how to ramp up doses.

 

Hydroxyzine - 25mg  3 times per day.  Prescription required.  Mentioned anxiety (off label use) to obtain the drug. It is an H1 receptor antagonist.

Cimetidine - 200mg once a day at night.  Tagamet brand, bought over the counter.  

Cetirizine - 40mg per day, taken at night. H1 receptor antagonist. Common brand name Zyrtec.

Minocycline-50mg per day.  A powerful atypical microglial activation inhibitor.

Advil  800mg per day.

Bergamot from fresh grapefruit, Earl Grey tea.  Helps with POTS.

Flu shot annually

One multivitamin per day, see below

Cytochrome P450 pathway blockers (may be dangerous; works for @profoundfatigue).  

Actions, diet, exercise

Ketogenic diet  Avoided glycolysis metabolic pathway usage, which depends up glucose (blood sugar) to extract energy for cellular metabolism. Instead, used gluconeogenesis via the Keto diet.

Avoids aerobic activities and exercise. When starting to recover, focused on gently introducing anaerobic activities.  Body Weight exercise???

Background:

17cytokines@profoundfatigue is a person ill with ME or CFS for 22 years who has achieved a remission this year after many months of experiments.

1992. Had mono as a teenager.

1996. Caught the flu and came down with mecfs

Diagnosed in 1996 by Dr. Susan Levin in NYC as having CFS.

Moved to California after 2000.

Symptoms - CFS, brain fog, hives, POTS, poor temperature regulation, but no myalgias, no allergies.

September 23, 2017. Started Minocycline and Celebrex.

September 25, 2017 having a good day.  Same day overheated and needed ice packs.

October 18, 2018.  On Keto diet.  Reported eating Roquefort and Bleu Cheese for gut biodiversity.  

November 3, 2017.  Flu shot.

November 7, 2017.  Having a good day.  Mention of Celebrex and Paleo Diet.

November 8, 2017.  Started LDN.  Started to shake, sweat and feel light-headed.  50mg Naltrexone pill dissolved in 500mL distilled water to make LDN.

November 10, 2017.  Drive (willpower) returning.

November 11, 2017.  Headache, vomiting, sweating.  Should try a lower dose.

December 4, 2017.  Mention of Tagamet 300mg 3x per day.  Taking it?

December 5, 2018.  Taking Propranolol for POTS.

January 2, 2018.  Stood up while folding wash.  Surprised!

February 15, 2018.  Having a set back.

March 7, 2018.  Having intense crashes.

March 20, 2018 Last tweet for a while.

Between March 20, 2018 and August 18 moved to a new location.

August 18, 2018 Reported remission 

November 7, 2018 Reported relapse

Notes written by @profoundfatigue to an ill relative

Listed in order of importance to my recovery:

  1. Low dose Naltrexone. I dissolve it in diet tonic water containing quinine. Quinine, an ingredient in tonic water, is an antiviral agent and has analgesic, antipyretic (fever reducing) and anti-inflammatory properties. Diet tonic water is used in order to avoid sugar. This makes it slightly more Keto diet friendly. Take 4.5 mg daily. Review LDN research. I am able to tolerate naltrexone at higher doses but it’s immune modulation benefits are only noticeable at a low dose.
  2. Keto diet
  3. Avoiding aerobic activities and exercise. When you start to recover, focus on gently introducing anaerobic activities.
  4. Avoiding glycolysis metabolic pathway usage, which depends up glucose (blood sugar) to extract energy for cellular metabolism. Instead, use gluconeogenesis via the Keto diet.
  5. Hydroxyzine, H1-receptor antagonist or antihistamine, is used to treat Mast Cell Activation Syndrome. Read the research about MECFS and Mast Cell Activation Syndrome.

Other:

  1. Cimetidine, an over-the-counter H2-receptor antagonist that has antiviral and immunomodulatory properties. This medication is commonly used to reduce acid in the stomach to treat ulcers and acid reflux. Read about combining the H1-antagonist hydroxyzine with the H2-antagonist cimetidine.
  2. Cetirizine, H1-receptor antagonist or antihistamine, maybe be useful. Analogues, or medications that share some similarities, include cyclizine and hydroxyzine.
  3. H1 and H2 antihistamines taken together often synergistically potentiate each other.

Resources:

MECFS treatment roadmap

Health Rising Forum

Short list of the researchers I follow:

  • Dr. Jarred Younger
  • Dr. Susan Levine
  • Dr. Ron Davis
  • Dr. Lucinda Bateman
  • Dr. Jose G. Montoya
  • Dr. Maureen Hanson

I’m always monoting the research related to #MECFS. You can follow me at:

https://twitter.com/ProfoundFatigue

Notes:

I do not have fibromyalgia or any pain associated with MECFS. Nonetheless, I respond very well to the fibromyalgia medications and protocols. I also have severe POTS, which went into remission at the same time as my MECFS did. I used propranolol, a beta-blocker, to help me manage my POTS, but it was still quite severe. I found that grapefruit juice and earl grey tea with bergamot helped stabilize my blood pressure and POTS.

Areas of research I’m interested in:

  • LDN is a glial cell modulator. It also acts as a atypical anti-inflammatory medication targeting pro-inflammatory cytokines and is a microglial activation inhibitor. I’m interested in other novel microglial inhibiting drugs used to treat neuroinflammation, similar to naltrexone, like minocycline, ibudilast, and dextromethorphan.
  • Kappa-opioid receptors’ involvement in human lymphocytes (not very interested in the mu-opioid receptors, which modulate pain). Kappa-opioid are involved with states on consciousness and may be related in the torpor-like hibernation states seen in those with MECFS.
  • Inflammation and anti inflammatories, especially COX-2 inhibitors, like Celebrex (celecoxib). I find advil to be helpful.
  • Viral conditions
  • Non-Hodgkin lymphomas, specifically diffuse large B cell lymphoma, marginal zone lymphoma, and B cell NHL not otherwise specified. Those with MECFS have an increased risk of developing lymphoma.
  • Novel antihistamines research into H1, H2, H3 & H4.

About me:

Sudden flu-like onset in 1996 in NYC. The two predominant flu virus strains in 1996 were A(H3N2) and A(H1N1).

22 years of MECFS before first and only remission in 2018

Diagnosed by Dr. Susan Levine, NYC in 1996

Skin warts (virus) contracted in childhood

Chicken pox in childhood

Mono (EBV) during childhood

Did a lot of travelling in SE Asia and lived in Japan. Got sick several times but don’t know what viruses I might have been exposed to.

Was a vegetarian when I contacted MECFS

I was a very physically healthy and active at the time of the onset

Have water-induced urticaria (hives/rashes), a Mast Cell condition, which I manage with hydroxyzine

Have scoliosis

Sibling has ulcerative colitis and Marfan syndrome (related to Ehlers-Danlos syndrome)

Have no known allergies