I am an FFC patient, but i think I may be in the 10% that does not get much better, with periods of "wellness". I have 2 of the big 3...HHV-6 and EBV, M. pneum, yeast. My HPA axis was messsed up, but with T3 and cortisol I feel that is better. My Vit D, B12 and HGH were low, but better now. My NK cells were at 8 and rose to 11. My D is hard to keep up, oddly tested low after spending the summer in the sun. Neg for Lyme and Borrelia, Western Blot twice. The fatigue is still present and muscle pain. Some things have improved such as shin pain and hand/feet numbnesss. Brain fog is better, but still present. I pace, so that helps.
I am doing the most updated SHIN protocol, have done IMIG. Oddly, I break out with B6, we don't know why, but it is def the B6, so we do not use in my M. cocktails. LDN stopped working after 4 months. On it, I felt pretty good (was NOT slow release). Famvir takes muscle pain away initially, then it stops working as well. Mag Malate didn't seem to help. We are thinking of trying Immunovir. I take 5 mg of dexedrine if I need to go out, otherwise I really have a hard time keeping up. Provigil worked, too, but my insurance wouln't cover it. I am also on my 3rd month of a trial of azithromycin. My latest bloodwork indicated increased fibrin. So, added coag clear. The air hunger is some better.
I take T3 15 mg, hydrocortisone, coag clear, azithromycin, Famvir, Release and Renew, Anti-Viral, sub methyl B12, D3, Bone Health, Coq10, Mitomax, , ultragenesis and antiviral (formulations for FFC). Tried gamma grow, stopped Omega3 due to cholecystectomy. Are we missing something? Tried A-Lcarnitine, corvalen. Took pregnenolone. sleep:Rest and Restore, Ambien, Klon.
Previous infertility (low prog). During CFS treatment, something corrected because I became pregnant and it stuck! Took 18 mo hiatus from treatment.
I want to feel better and play with my kids!!!! I know this is long, please advise if you can!
You seem to be on top of your condition, but there may be more that you can do to improve your health. For one, I would personally re-consider the use of hydrocortisone, because this suppresses your immune system and CFS patients already have immune system problems. You might do better actually stimulating your immune system not suppressing it. Although azthromycin is effective against Mycoplasma pn., for long term use, which is usually necessary, doxycycline should be considered. This type of infection often invades the thyroid gland, causing throiditis and abnormal secretion of thyroid hormones.
Also, you should consider Lipid Replacement Therapy to improve mitochondrial function.
You can find out more on our website, www.immed.org under Treatment Considerations.
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