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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Realistically there is no cure?

redaxe

Senior Member
Messages
230
We added Florinef and a tachycardia med, synthroid (T4) and liothyronine (T3), Equilibrant, LDN, Vitamin C, fish oil, methyl folate, TMG, high dose (1800-2400 mg daily) CoQ10, and most recently acetyl-carnitine, PQQ, and a biggie -- IVIG. Another medication which is not new, but valuable, is Trazodone for sleep.

My daughter now takes most of the above plus midodrine and inosine.

There has also been talk of Immunovir and ketotifen (both of which we'd have to source from Canada), but we're waiting on those until we see how some other things are working out.

Thanks for sharing that. That's good you're getting IVIG that ought to make a difference. One thing though - I'd go easy on Isoprinosine. I tried that at the Cheney recommended dosage and it made me feel like a had a huge flu - so if there is a defective B cell autoimmune component to your illness be careful with drugs that stimulate the immune system even more.
 

SOC

Senior Member
Messages
7,849
Thanks for sharing that. That's good you're getting IVIG that ought to make a difference. One thing though - I'd go easy on Isoprinosine. I tried that at the Cheney recommended dosage and it made me feel like a had a huge flu - so if there is a defective B cell autoimmune component to your illness be careful with drugs that stimulate the immune system even more.
Thanks for the warning. :) Although we appear to be more immune deficient than autoimmune, the immune system is so complex it's hard to know what's going on. If we go with Isoprinosine, we'll definitely be cautious.
 

Violeta

Senior Member
Messages
2,895
It would be funny if the cure for cancer turned out to be the cure for ME/CFS, too.

PS: I don't consider chemo a cure for cancer.