Hi Jim.....I don't know if my information will help, but I'm taking Acyclovir.
I've mentioned in several posts that I've taken very high doses for over 3.5 yrs.
I'm being treated by Dr. Chia and he actually prefers Valtrex and Equilibrant for a lot of his patients (he's had success with this protocol).
You mentioned that you THOUGHT it might be helping you and that struck a chord with me!
It can be extremely difficult on these anti-virals to tell how much improvement you're really experiencing.
After three years (and that's been consecutive - NEVER a break) I'm noticing a significant improvement in my "brain" problems.
I can read books again - where I was unable to for quite a few years. I can write (as in "post") although not without great effort and always suffer from PEM if I try just a bit too hard.
But the PEM doesn't last as long as before. And now, if I scrutinize how I'm feeling on a day to day basis, I think I'm improving somewhat in most areas that have been affected.
Not dramatically, but in a more subtle way that's sometimes hard for me to describe. I think you said that you weren't having fevers anymore....same here!
I won't go into all the changes I'm started to see, but just wanted to tell you to continue, if you can, to hang in there!
I don't know how long you've been taking Valtrex/Equilibrant. The only "improvement" for the first 1.5 - 2 yrs. (for me) was the supression of my Shingles.
Ironic, since I only developed shingles (coincidentally) after I began the anti-viral treatment.
The reason I'm not on Valtrex is my HMO health plan. Acyclovir is ok'd and paid for - Valtrex is not.
Dr. Chia is an extremely kind, compassionate and considerate man and he knew this and never gave me the option of one drug over the other.
Of course there is a difference between the two, but this "therapy" was a gamble anyway, and I gladly took it.
Dr. Chia strongly believes in adding an immune modulator such as Equilibrant (previously used Oxymatrine or Marine from China), but as I have a very high degree of pain and use opioids whenever I need them, it appears that precludes me from taking those, as well as LDN.
It's my understanding that at the very least this protocol is a long-term proposition, with possible relapses when it's stopped.
I was originally started on anti-virals by my Neurologist, and told to prepare to be on at least a maintenance dose for life. XMRV may change that.
Also, because of my HMO, I've been denied quite a few of the lab/blood tests I see others having done. So I can't tell you what my "numbers" are.
But in the tests I have been given, nothing shows up positive! And yet, my Dr. has dx'd me with Chronic Enteroviruses (multiple) based on my history/symptoms - there is NO doubt in his mind.
My EBV titres were in the high 600 range (you know, flagged by the lab) - but I was told that wasn't very high compared to many others with ME/CFS - and not important.
I haven't been tested for the Retrovirus yet. I just wonder?!
Who knows, maybe we have both been on the "right track", so far. I'm content with that for now, because I'm finally seeing a difference.
But I'm also ready to switch gears if it turns out I can actually receive a treatment meant for what I HAVE!
regards.........jackie