hi heap. i think its 500 mg 3 times a day. problem is, if i tell my doc i feel worse, he will not give me any more of it. he doesnt treat CFS normally.
why did EBV giving me trouble but the other herpes viruses that i must have had my whole life, never gave me trouble?
if i have chronic EBV, why can it never be cultured in my blood? why can they never find it in my blood by PCR?
if its only in my brain, why didnt years of antivirals help? why didnt IV vistide help?
if its latent but still pumping out harmful chemicals....in a form that antivirals cannot touch...why do i get this "die off" type feeling on famvir or valcyte?
Daff ebv was 1 of the 3 viruses that initially triggered my cfs and i tested positive to life long antibodies igg shortly after this. since then i have had several other ebv tests pre and post av and i have tested totally negative. My doc has said that my immune system just doesnt produce antibodies to it for some reason, this does seem to be common with cfs and in Oslers web this occurrs in the lake tahoe outbreak.
As for not being cultured in blood, i think its not in blood but just living within our nervous system where it causes alot of problems for us. I know u have done antivirals before for a couple of years but i think some of us just need to be on them all the time and for longer, plus i dont think it irradicated viruses totally, maybe it just cant get into the nervous system but when it tries to replicate in the blood then the av's can get at it. From memory i think i read that for these viruses to replicate they do need to leave the nervous system and go into blood/tissue, this is when the antivirals can get at it, but not 100% on this.
I dont think herpes viruses are the answer for everyone but for many it can be apart of the problem or maybe the whole. I think u just have to keep taking the antivirals everyday just like one would take a vitamin?? I think they are an issue with u daff or else u wouldnt get any reaction from av's. I think the dose your on, you could lower which might help side effects. I got results using just 250mg twice a day.
I dont know what other treatments u are doing and im problem repeating what u have or are doing but i think to help with inflammation u need a variety of antioxidants in good doses and i think it can help slow down the progression of cfs/me. I also think with us cfsers who have been ill for a long time, have to have varying degrees of adrenal fatigue/dysfunction that can hamper our improvements and immune function. on its own one is only going to see small results but i think in combo with infection/immune treatments it can make a big difference. Hormones have so much to do with controlling inflammation, improving energy and helping recovery. The hypothalamus is what controls adrenal function and its the hypothalamus which is injured in cfs/me which is what makes it a neurological illness.
I hope what i have written helps you out. I have known you online for a long time now and every time i see u post a new treatment u are trying i really hope it works for u and when it hasnt. i can feel your frustration. i think your doing the right thing with antivirals and maf, i think u would improve with adrenal type treatments(go low and slow). I wish i could take this illness away from you, u try so hard and i think u deserve it. Stay positive chick and think more laterally, there answers out there, im sure of it.
take care,
cheers!!!
