Valcyte updates, anybody?

[SOC]

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?

 

[heapsreal]

i also thought valcyte would help ebv but have read similar stories where valcyte didnt help ebv, mmmm interesting. I have tested positive and negative to ebv and positive to cmv, negative to hhv6, im currently waiting on results of a more extensive test on ebv as previous tests have been inconclusive. I also had no results from valtrex (500mg x 2 a day, dose maybe too low, cost is a factor for me) but have had good results with famvir, so maybe famvir is more effective against cmv then we know about. In australia we dont have the type of insurance that would cover valcyte so we would have to pay full price which is like $15000 for 3 months, but if had a chance would try it, any other aussies out there that can get valcyte alot cheaper let us know.

cheers!!!!

 

[guest]

@sickofcfs: I hope that both of you continue improving. Since current antivirals are not specific enough in their way of action this can be a bad sideeffect in my eyes.

 

[SOC]

Yeah, Valcyte is really pricey. Have you checked with Roche? I hear they have some free or reduced cost programs for those who can't afford Valcyte. I've heard Valtrex isn't going to touch CMV, especially not at relatively low doses. Glad to hear abou the famvir, seems like I've heard several people having good luck with it.

Good luck with continued improvement on famvir!

 

[SOC]

@sickofcfs: I hope that both of you continue improving. Since current antivirals are not specific enough in their way of action this can be a bad sideeffect in my eyes.

Thanks, Diesel!

It sure would be nice if current antivirals were more specific in their action. Hopefully they will continue to research and give us better meds.