You are one of the many thousands of people who have CFS and also have autoimmunity issues. Dr. Garth Nicholson has written articles about this and if you would like me to zip the links your way, I could certainly do that.
I've never tried the anti-virals. I do know that the body converts Valcyte into Ganciclovir, a well established but potentially toxic anti-viral medicine.
Potential side-effects of Valcyte/Ganciclovir include suppression of white blood cells, red blood cells and/or platelets. Low white blood cells increases risk for infection; low red blood cells causes anemia; low platelets increase risk for bleeding. If not monitored, detected and reversed, these complications can be fatal. Fortunately, side-effects can usually be reversed by stopping the Valcyte or by lowering its dose.
In addition to those side effects, I'm also concerned about the effect that Valcyte would have on the immune system.
My physician has me addressing the bacterial issues (mycoplasmas, etc) that is the underlying cause of my illness (my opinion along with some other physicians) and is waiting for the results from the next Valcyte trial. Since I am making progress on my current treatment, I may decide to stick with it, although it takes years.
Thank you so much for explaining the treatment. I was thinking of trying another course of antibiotics as the first made me feel so much better. Will ask doc when I see him. I'd be really grateful for any info from Dr. Garth. I am in England and see Professor Findley who believes that M.E. (CFS) is virally rooted in the hypothalamus - hence the muscle, emotional and cognitive symptoms.
Glad to hear you're making progress. Stick with it. Lets both wait for the next Valcyte trials - meanwhile we may even get well all by ourselves before they're finished!
Its great to hear from another CFS'er ! = ) I saw my Endo recently and he told me that the results from the 2nd Valcyte trial should be released around September. My Endo has already spoken with Dr. Montoya and the way I understood it was... the results were as positive as the first trial. I'm happy that we at least have options. I do wish that physicians would also do more for fibro patients and include them... as I believe their illness is also pathogen related.
I'll zip you the information via PM.
I am also taking an antiviral med for EBV / CFS. The drug is Famvir. I take one pill per day. The goal is to keep EBV in check and hopefully eliminate my CFS.
I did not realize the side effects of this drug. Wow. I also show mycoplasma infections (mycoplasma pneumonia / chlamida pneumonia) which no doctor believes requires treatment. Anyway, I've been on the antiviral drug for just over 2 months with no sign of improvement. In fact, I feel worse. I am wondering if this is the right approach. The ID doctor who prescribed the Famvir has very "controversial" methods / treatment for such diseases. Am I making myself sicker? How can I learn more about the side effects ..... she's not even monitoring my blood !
Thanks.