XMRV treatment

Discussion in 'Fibromyalgia Main Forum' started by ladybugmandy, Nov 23, 2009.

  1. ladybugmandy

    ladybugmandy Member

    just wanted to say that dr. klimas thinks single drug therapy might work for this virus if dr. coffin is right and the mutation rate is slow...but she still seems unsure.

    i am wondering if i should wait 3 months for the in vitro work to be done before starting AZT....but i really don't want to.

    i wish there were more people here seeing peterson or someone else who is trying AZT. if someone knows of anyone on AZT, please let me know...

    i did run into one woman on another board who says she tried it and is starting to feel better but it was a very short post with little information.

    i can actually feel the infection festering in my head and brain stem...it is throbbing all the time...:(
  2. TigerLilea

    TigerLilea Active Member

    Hi Sue - When you say you feel the infection festering in your head, I can't help but wonder if that isn't due to side effects from the Valcyte that you are taking. Two of the more serious side effects are mental/mood changes and unusual or severe swelling. Mayo list confusion, false beliefs, and feeling, hearing, or seeing things that are not there.

    I know you tried going off of the Valcyte for a few days but found that you felt much worse so went back on it. That was probably due to your body going through withdrawal. Maybe you need to try slowly lowering the dose rather than quitting cold turkey. I went through hell when I went through withdrawal from caffeine while trying to kick my 20 to 30 cups a day habit. It wasn't easy, however, at the end it was well worth it.

    Just my opinion, but I really think that you should go see your doctor and talk to him/her about going off of the Valcyte to see whether this could be causing a lot of the pain you are going through at the present time. I could be wrong, but I would think that if you actually had an infection festering in your head, you would not be able to function at all.
  3. denis321

    denis321 New Member

    Just wanted to add that from what I know, researchers aren't sure about if XMRV is a slow or fast replicator and I heard from one source that it might take a long time on meds (months? years?) to get rid of the XMRV if it is a slow replicator.

    However, this sort of makes sense because as we've seen with both the Valcyte and rituximab (Norway) trials in CFS, people have taken weeks to 6 months to more than a year to get the full response. I think this is a function not just of controlling whatever virus is involved but allowing our bodies time to lower inflammation and return to a more normal immune state before we start to feel really better.

    In any case, I don't mind taking a med for a long time if I can see the end and/or feel SOME improvement along the way. If AZT does work, I think it will be a temporary measure until we get a better drug.

    Realize in HIV, that after AZT was found, a lot of drugs came on the market within a few years for treating HIV. And that now, the newer HIV drugs have much less side effects than the first generation -- this from my doc who also treats a lot of HIV patients.

    Please hang in there, Sue!
    [This Message was Edited on 11/23/2009]
    [This Message was Edited on 11/23/2009]