Is there anyone currently on Valcyte?

Discussion in 'Fibromyalgia Main Forum' started by redhummingbird, Oct 11, 2008.

  1. redhummingbird

    redhummingbird New Member

    My doctor would like me to revisit the idea of Valcyte pending results of RNase L panel.

    I'm not all that impressed with this drug after doing research on it.

    I know there are a few on this board who had improvement.

    Does anyone know if Montoya has published his study yet?

    There was a thread awhile back that had a list of names of people who had taken valcyte along with improvement or lack of improvement but I can't find the thread.

    Just revisiting the idea of Valcyte. I was approved by Roche for patient assistance so I'm receiving it for free.

    Basically I'm trying to make a decision about whether or not to take Valcyte. I'm looking for some help in making this decision.


  2. sscape

    sscape New Member

    Valcyte only works for people who have a lot of HHV^ and or EBV.. IDK if he has published, but it is a real dissapointment for a lot of people. Famvir and Valtrex is also tried by some folks with some sucess and a little less danger.
  3. redhummingbird

    redhummingbird New Member


    Thanks for posting your progress and experience on Valcyte. I'll have to look up your old posts too.

    I agree with your theory about toxic build up and the importance of removing the methylation block as well as getting out of a toxic environment.

    I have been looking into the mold issue. I've got that dreaded multi susceptible genotype and live in a building that had a couple bad water leaks.

    It's been remarkable what has happened for people who are practicing mold avoidance. Very dramatic results.

    I'm housebound and very limited financially so I'm trying to figure out a way around those two obstacles.

    My doctor gave me some very simple mold test kits just to get a general sense if something is going on. Not very reliable though.

    There are so many issues to look into with this illness. I do believe not being able to clear toxins is key.

    I'm glad you are making progress with Valcyte. Heart issues are scary. I have a bit of myocarditis but it's hard to know what is causing it. My doctor is wanting to be more aggressive with treatment.

    I hope this makes some sense. I'm feeling ultra poorly today so my brain is not working.

    Is there a good test for enteroviruses? My doctor says no but I'm wondering.

    You're doing okay on valcyte even though you have enterovirus also? That's good to know (though correct me if I'm wrong). I'd heard that some people who got worse on Valcyte ended up having enterovirus.

    I've also been doing Rich's methylation protocol for the past 9 + weeks.

    It's good to hear from you.
  4. sascha

    sascha Member

    definitively and definitely.

    i tested very high on HHV6 and HSV1 prior to valcyte. the course of treatment was rough for me, but at the end my titer counts came way down AND i gradually came out from the valcyte and noted i no longer had the same constantly cycling cfids symptoms of feeling sick in many and various ways.

    my HHV6 count started at over 10,000, and now is down to just over 300. after valcyte (5+ months of it) i went on valtrex, and then acyclovir, which i am now on. i'm not getting side-effects from acyclovir at all.

    i am weak and exhausted now as i start next phase of healing through diet and supplements- i'm working with online doctor after having many tests and will zero in on getting my innards up and functioning. a number of things were found to be out of whack. (it's the CDSA testing of stool, then blood, urine, saliva; based on idea that 80% of our immune system is located in the guts, so they must get well)

    that's my experience with the valcyte. it has helped a number of people. best, sascha
  5. redhummingbird

    redhummingbird New Member

    It's so good to hear from you! You were one of the people I was wondering about.

    It's great to hear you had such good results from it.

    My titers aren't anywhere near as high as yours. I can't believe how high yours were!

    Do you think Valcyte would work for me given that my titers for EBV were 1:320 and HHV 6 1:320 (then at a later test dropped to 1:160 but my doctor thinks it has flared up again).

    Regardless I'm so happy for you that you are seeing improvment. I remember you're journey. You walk through fire with this stuff!

    Wishing you continued and speedy healing...
  6. ladybugmandy

    ladybugmandy Member


    may i ask if your CFS was triggered by an infection?

    if so, your best shot is a valcyte + valtrex combination.

  7. redhummingbird

    redhummingbird New Member

    Hi Sue-

    It's hard to know if it was triggered by an infection. I was so busy with lots of activities at the time. I'd had a bout with a lung infection, strep throat, bronchitis all in 2005.

    I don't think I ever quite recovered from those. In 2006 I had surgery to remove a bone tumor in my leg and had synthetic bone graft. I had a huge rise in anxiety during my recovery-panic attacks out of nowhere. I'd never experienced anything like it. My current doctor wonders if some sort of virus came with the synthetic bone graft. I also ended up having back surgery that year too.

    In July 2007 I started having my first symptoms of profound fatigue and dizziness. By December I was housebound.

    Looking back though it seems there were some precursors-I started having terrible insomnia, anxiety, depression and feeling tired but I thought it was all stress related.

    My doctor firmly believes viruses have a stronghold on me. He treated me clinically for lyme/babesia but believes, as I do, that they were opportunistic.

    Sue-You are an inspiration. I've followed your progress while on this board. I'm so pleased that you have turned a corner.

    I'm going to spend the day reading Dr. Lerner's stuff.

    If you have any thoughts feel free to share.
  8. redhummingbird

    redhummingbird New Member

    Thanks for the info.

    It has crossed my mind too to get a group of people together to form a community set up around the idea of mold avoidance.

    I love New Mexico and was born in Albequerque. From what I've read Khaly is doing well in that area.

    It's such a conundrum this mold thing. In order to know if mold avoidance would help one get well you have to be well enough to travel! I'm just trusting that the answer will come in due time.

    I did Shoemakers BIRS and VCS test which said there was a 99.9504 chance I had biotoxin illness.

    I wonder if viruses can be considered part of biotoxins? I'm thinking they are opportunistic too in people with this genotype.

    My doctor believes in treating the thing that is most troubling.

    I'm curious as to what the mold testing will show. I'll know more in a day or two. If there is a big mold problem here it would be pointless to attempt treatment while living here.

    I think the phosphatidyl serine complex is helpful. I'm a firm believer in the methylation protocol and can't wait until Rich's paper comes out.

    I'm guessing an endoscopy would be the way to get a stomach biopsy done? I sure wish we had access to Dr. Montoya's information. I bet there's a lot of good info there about people who are good candidates for valcyte vs people who its contraindicated for.

  9. sascha

    sascha Member

    valcyte efficacy. my impression is it's not really known at this point who responds and who doesn't, based on viral testing. also it can take a long time to find out how you respond- even some time after you've stopped the course of valcyte.

    Dr. Montoya did tell me age wasn't a factor, and reaction during the taking of valcyte wasn't a factor. some people got good help from it without difficult side effects.

    cfids is a very complex affair! many many variables and they haven't had time yet to figure them out. i believe at some point we'll know a lot more.

    sorry i couldn't be of more help. if your doctor recommends it, then maybe it's worth a try. good luck- Sascha
  10. ladybugmandy

    ladybugmandy Member

    please share your RNase L results when you get them!!


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