Discussion in 'Fibromyalgia Main Forum' started by sascha, Dec 31, 2008.

  1. sascha

    sascha Member

    over the past few months i have come across a lot of negative comments and conclusions drawn about valcyte- but they do not reflect the truth. it is not reasonable to generalize from some cases reporting no improvement after taking valcyte and come to conclusion that NO ONE has gotten or can get help from this anti-viral drug. equally true, unfortunately, it can't be reasonably put out there that everyone benefits from valcyte. some experience help from it; some don't.

    my main high virus count- HHV6- first tested at over 10,240 (5/1/07). my recent test (12/18/08) showed my HHV6 to be down to 160.

    a number cfids symptoms i've had for years have lessened a lot or disappeared- the constant all-over aching, the incapability of the brain to function, the ever-present cycling through of feeling sick in a variety of ways, the utter exhaustion that swamped me so much of the time, where picking something up off the floor might have to be deferred for weeks, or when with people i'd have to put my head down, or lie on the floor; and the almost constant need to isolate myself from all outside stimuli as they were too painful and overwhelming.

    i couldn't, for over a year, do laundry or housecleaning of most any sort. i rented a room during this period from a 90-year-old woman who COULD vacuum while i could not do it (i'm in my sixties). all i could do was most basic maintenance of self; fixing food, getting in supplies i needed, and those were often very difficult tasks to accomplish.

    i've since moved back in with my son, and am much more (and happily) involved in keeping house things going. i can do laundry without aching all over and having to lie down after for hours. basically- i'm enjoying myself now, and this has been a rare thing in the past.

    now i am weak and deconditioned, and it will take a while to know how much benefit i will finally experience from the valcyte course of treatment. i finished the valcyte June 6, 2008; it was not an easy treatment to undergo, and it wiped me out for months and months. but i started noticing soon after it was over that cfids symptoms were changing for the better.

    i went on valtrex following the valcyte, but since it was too expensive for me i switched over to acyclovir which i am currently taking.

    i saw Dr. Montoya yesterday (what a good guy) and he cautioned me AGAIN AND AGAIN to go slow; to not overdo and then crash: that doing this endangers my forward progress. that i must continue to concentrate on resting as continuing part of my treatment. all you post-valcyte patients who read this, heed this warning from Dr. Montoya!

    i wanted to put it out there that i am one who has benefited from valcyte, and speak for others who also have gotten good results from it, and help set the record straight. THANK YOU!! Sascha
  2. Nanie46

    Nanie46 Moderator


    I am so happy for you, that you have had such improvement in your health and quality of life!

    I have FM and had improvement with Famvir and an elimination diet in 2007, then got worse in Feb 2008. I am now pursuing whether I have lyme besides my viral issues.

    Everyone should keep an open mind, because just when you think something will not help you or doesn't apply to you, you might find out that is not true...and no one wants to miss their chance to get bettter.

    Thank God for open minded Dr's like Dr Montoya and others who understand the viral theory and are willing to treat us. So many other Dr's just prescribe meds to cover up all the symptoms which really does not offer any hope of truly addressing the cause and gettiing better.

    Wishing you continued wellness in 2009! Happy New Year!!!
  3. emmally

    emmally New Member

    This is Great! I am on my 7th month of treatment and am beginning to feel so much better! Although, I still have a ways to go. Hopefully soon I can wean off of it and start to see more results. Did you see most of your results while you were on valcyte or once you stopped taking it?
  4. stschn

    stschn New Member

    Thank you. I too get upset with all the negatives posted about Valcyte. While I haven't gotten as much benefit as I had hoped for I have improved. I did once again shoot myself in the foot as they say by over doing after 2 weeks of feeling really well. I'm a slow learned but I know that I've got it now. The big thing is how little it takes for me to over do. The holidays were good but still the stress didn't help. And yes like many others of you Dr. Montoya is my hero.
  5. redhummingbird

    redhummingbird New Member


    Thank you for posting this. I'm so glad to hear you are experiencing improvement.

    We need to hear stories like yours.

    As you know, my doctor has wanted me to start Valcyte for quite some time. It's because of the stories I've heard here (mostly from people who haven't even taken valcyte) that I've been reluctant to.

    I finally shared with him what I heard here and he expressed a little frustration. He said that 50-60% of people experience improvement on Valcyte (I don't know where he got his information).

    I hope you will keep posting your post Valcyte experience. It really helps.

    Also, thanks for telling me about patient assistance through Roche. I qualified.

    My only concern (aside from the die off and side effects) is that my viral titers to HHV 6 dropped to 1:160. I think I'm still going to try it in January once I recover from moving and find a new doctor.

    I wish you the best...
  6. sascha

    sascha Member

    Nanie46- thanks for post. heavens- good luck with lyme test. i never had one of those.

    emmally- so good you're feeling better also. and you're in month 7 on the valcyte. i felt pretty bad while on it, and it wasn't until after it was over that i gradually started noticing changes for the better.

    Chrissy- i was on valcyte 5 months and 6 days. i felt really sick on it; felt toxic in mind and body. you are taking a lot of meds. hope you get a lot of help from them.

    stschn- it's a worry that some people who might benefit from valcyte might just read negative feedback about it here and not take the chance to try it. Dr. Montoya is a gem. i love seeing him.

    redhummingbird- i figured it was worth a gamble if the valcyte held out any potential for helping me. i was willing; actually anxious, to try it, even though i'd read and heard it could be rough. so your HHV6 is already at 160- maybe there are other viruses causing problems. we have to keep in mind that this website is an open forum and so it is of course going to get all points of view and many different opinions. some information i've gotten here has been so valuable for me. we just have to be careful to check things out and not get taken in by misinformation.

  7. emmally

    emmally New Member

    I have noticed that earlier in my valcyte treatment and I think even before it, it did not matter how long I slept (4 or 14 hours), I would still feel like absolute crap. I now have to be very very strict on my sleeping. If I go to bed early and sleep a good 10hrs, I feel soo good (compared to what it used to be like). If I go to bed late or dont sleep much at all, I feel awful until I take a nap and than I am ok. I wonder why before it didnt matter how much I slept and now it makes all the difference??? Did anyone else experience this when they started to feel better?
  8. emmally

    emmally New Member

    I was borderline positive for hhv6 1:16 the first time I was tested. THe next time I was tested (two weeks later) it was positive at 1:32 and kept rising from that point. I think I had around 3 or 4 positive tests before I started valcyte using labcorp testing.

    Word of caution, I was told for a year and a half that I had extreme high titers for active ebv by several different doctors (internists) using a different lab (I think Quest). But all specialist (infectious disease doctors) told me that NO it is not active ebv and that I hadnt had an active infection sice I was around 14. That was when I found out that it was really hhv6 and not ebv. That is why it is important to see a specialist in viruses.
  9. emmally

    emmally New Member

    You have to be careful though with infectious disease docs because some do not "believe" in cfs and not all automatically test for hhv6. You might have to bring it to their attention. Before I got tested for hhv6 and didn't even know it existed, other infectious disease docs would just test me for ebv and HIV and never even mention hhv6.....I got lucky with my doctor because he is an infectious disease legend and he specializes in cfs and he knew to test me for hhv6 when I tested neg in his lab for ebv.
  10. Forebearance

    Forebearance Member

    I'm so happy for you, Sascha. I hope you continue to feel better.

    That was REALLY interesting about your HHV6 infection being mistaken for EBV, emmally.
    I was originally told I tested positive for mono, and then three years into my illness I was told I had never had EBV. I've always wondered what was going on with that.

    I figured I must have had some virus that was very similar to mono and made the mono test look positive, and then later when I had a more accurate test it showed that I hadn't actually had mono.

    So thanks for that.

  11. dhamma

    dhamma New Member

    Hi all, I haven't posted in quite some time, and I'm disappointed to see that Valcyte continues to get such a bad rap. My daughter and I were both very sick with CFS for approx 10 years. After Valcyte treatment we've both returned to normal lifestyles. Yes the treatment is rough, but I'd do it again if needed. It's been well worth the recovery we've experienced. We both had extremely high levels of EBV and HHV-6 antibodies, but no active virus (that could be found in the blood). Our doctor treated us with the Teitlebaum protocol for over a year before Valcyte. This took care of any bacterial infections, hormonal, digestive, vitamin, and mineral imbalances. We both experienced some improvement just from the protocol, but we were still "sick". Since Valcyte, we no longer suffer from brain fog, constant debilitating exhaustion, sore throats, swollen glands, fevers etc....
    Valcyte gave us our lives back! Please check out my previous posts. Don't give up!
    Take care,
  12. emmally

    emmally New Member

    I do not stress easier now that I am getting better. Allthough the whole valcyte process did stress me out alot. But who wouldnt be stresed being that sick and going thru it. The better I feel ,the less stress and anxiety I have. I am even beginnign to forget to take my anti anxiety meds. Thats when I know things are looking up.

    Forbearance, yes it was very strange. I literraly had two tests done by two diffent docs the same week. The internist tells me I am still going on my 8th straight month of off the chart ebv and the infectious disease doc at the time that I saw was telling me that NO it was not ebv and that the other doctors dont know what they are doing or how to read the tests. But I saw the tests and they clearly read positive for active infection by my internist doc and than negative in the infectious disease docs lab....very strange indeed...My theory is that the tests the internist used was not sensitive enough to differ betweenebv and hhv6. Thats the only thing I can explain it by.
    [This Message was Edited on 01/03/2009]
  13. sascha

    sascha Member

    emmally- it's true what you say, and i hadn't thought about it; that sleep now refreshes whereas before i'd kind of pass out from exhaustion, then wake up not feeling refreshed.

    i do know my adrenals were in state of exhaustion long before i found out about high virus count. i don't know if getting HHV6 under control will eventually help my adrenal system. i AM addressing it through work with online holistic doctor, who has had me do lots of testing, and is prescribing diet and supplements. first we are working on improving digestive and immune systems; then when they test at a certain level, i'll begin working on adrenal system.

    i have realized that i can't go full-speed into this next treatment phase- i seem to be too reactive, and i'm wondering if that's due to my still coming back from the valcyte. i think i'm so sensitized to everything, i need to be very careful and take a cautious approach to taking the supplements.

    anchorholds: i don't know if my HHV6 count would have fluctuated over time while not on valcyte, because i started the valcyte up soon after my initially VERY high test, and then the counts just went down steadily. and as i said, i know my adrenals were in bad shape years ago- i plan to keep working with doctor on supplements and diet, and eventually get to address and improve adrenals.

    dhamma- GREAT news about you and your daughter. just great- best to all!! Sascha
  14. chrissy12

    chrissy12 New Member

    I think my adrenals are down, too. However, when Dr. Lerner started me on valtrex and valcyte, he was adamant about not taking cortef. I was on that. He said it is contradicting what we are trying to do. I am not sure what he meant, but he crossed it off of my medication list. I don't take it right now. I will check with him when he cuts me back off of anti-virals.
  15. deserella

    deserella Member

    Thanks Sascha for sharing this and for the advice from Montoya. I started valtrex almost 3 weeks ago. I'd say I'm doing better than I was pre-valcyte but still as you said deconditioned. The valcyte wipes you out. I'm teaching 10 music students each week and taking an online class. My cognitive is so much better! Keep us posted on how you do :)
  16. antoinettegurney

    antoinettegurney New Member

    dhamma, thanks for your post. I was wondering if the Teitlebaum protocol you received came from the Fatigue and Fibromyalgia clinic? I've been going there for 3 months and have EBV and CMV. I am only taking Valtrex and understand from Dr. Lerner's research (watch the 2007 video presentation lecture: that Valtrex is good for EBV only and Valcyte is needed for CMV and/or HHV-6. The Fibro clinic that I'm going to is based on Teitlebaum and do not use Valcyte. I have an appt to see Dr. Lerner on Monday as I think I need Valcyte too. I've been on Valtrex for 2 months and have noticed little improvement.

    Is anyone familiar with Dr. Lerner's research regarding Valtrex AND Valcyte? I have read a great deal of positive research (online) about his research and his CFS practice in Beverly Hills, MI. He has also made a connection between CFS and abnormal heart function.

    Does anyone have abnormal heart issues since having CFS?

    Thanks for the references to Dr. Montoya. I am unaware of his research/practice and will look online.

    Best of luck everyone.
  17. emmally

    emmally New Member

    I have SVT and Mitral valve prolaspe.
  18. redhummingbird

    redhummingbird New Member

    Did anyone have intense anxiety upon starting Valcyte?

    If so, how long until it went away?

    Do you know why it occurred?

    I had almost unbearable anxiety today on my second day of Valcyte. It's better now. I'm trying to figure out whether or not to stop for a few days or just power through and hope it doesn't occur again after taking another dose.
  19. waltz

    waltz New Member

    I'm going to repost this in this thread. After Dr. Montoya's presentation at the conference last year, there was some misreporting of what he actually presented. I read some people's comments, Dr. Bell's comments, then went back to see what the video (no longer available) actually said. They missed out on some info that would affect how one interprets the results.
  20. waltz

    waltz New Member

    redhummingbird - I didn't have anxiety but I had paranoia and probably delusions. They lasted the whole time but got slowly less intense. So I didn't actually realize what was going on until after I stopped the drug. Had I been aware of it, I might have stopped taking the drug. That is why I do not plan on taking any more antivirals even though the doctor suggested it.

    I do not know if it was a side effect of the drug or of killing infected cells.
    [This Message was Edited on 01/21/2009]