SOC
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While I'm waiting (impatiently) for more XMRV news, I thought I'd check in with fellow Valcyte patients and see how things are going. I'll start.
My daughter and I have been on Valcyte for 5 months. We both noticed improvement within the first 8 weeks, mine small, but my daughter's improvement was substantial. At that time we were also taking supplements per the Pall protocol.
My daughter has plateaued, or her improvement is, at best, very small. We are not surprised at this -- we were told that many people don't see any improvement until after the first 6 months, so she's still ahead of the game.
I'm just coming out of 10 weeks of feeling worse than I was before we started -- swollen salivary glands (like the mumps!), swollen lymph nodes, sore throat, more fatigue. Rotten, but not awful. This can't have been a Herx rxn since Valcyte doesn't kill off HHV-6, it just stops it replicating. Maybe an IRIS-like rxn? Whatever it is, it was not unexpected; apparently many people have a similar rxn to antivirals. I'm glad it seems to be fading, though.
We stopped the Pall protocol supplements about 8 weeks into Valcyte treatment in order not to confuse the evaluation of the effectiveness of Valcyte. We've now decided that we both felt better on the supplements (with the Valcyte) than without them, so we're going to try adding them back again.
I was on Valtrex (from a different doc) before Valcyte and didn't see any improvement, but it was a really bad 6 months in my life -- mom died, related travel, H1N1, pneumonia, and a kiddo barely surviving the first semester of college with ME/CFS and everything I went through. So, the Valtrex might not have had a fair chance to help.
New doc took me off Valtrex ("It doesn't work for HHV-6"). My EBV-EA titres have been climbing ever since from 5 (0-20 normal) to 19. Don't know what will happen if they go outside the normal range. I would have though Valcyte would help with EBV, but maybe not.
Anybody else have a Valcyte update?
My daughter and I have been on Valcyte for 5 months. We both noticed improvement within the first 8 weeks, mine small, but my daughter's improvement was substantial. At that time we were also taking supplements per the Pall protocol.
My daughter has plateaued, or her improvement is, at best, very small. We are not surprised at this -- we were told that many people don't see any improvement until after the first 6 months, so she's still ahead of the game.
I'm just coming out of 10 weeks of feeling worse than I was before we started -- swollen salivary glands (like the mumps!), swollen lymph nodes, sore throat, more fatigue. Rotten, but not awful. This can't have been a Herx rxn since Valcyte doesn't kill off HHV-6, it just stops it replicating. Maybe an IRIS-like rxn? Whatever it is, it was not unexpected; apparently many people have a similar rxn to antivirals. I'm glad it seems to be fading, though.
We stopped the Pall protocol supplements about 8 weeks into Valcyte treatment in order not to confuse the evaluation of the effectiveness of Valcyte. We've now decided that we both felt better on the supplements (with the Valcyte) than without them, so we're going to try adding them back again.
I was on Valtrex (from a different doc) before Valcyte and didn't see any improvement, but it was a really bad 6 months in my life -- mom died, related travel, H1N1, pneumonia, and a kiddo barely surviving the first semester of college with ME/CFS and everything I went through. So, the Valtrex might not have had a fair chance to help.
New doc took me off Valtrex ("It doesn't work for HHV-6"). My EBV-EA titres have been climbing ever since from 5 (0-20 normal) to 19. Don't know what will happen if they go outside the normal range. I would have though Valcyte would help with EBV, but maybe not.
Anybody else have a Valcyte update?