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.