Valcyte Experiences

Discussion in 'Fibromyalgia Main Forum' started by tkearn5000, Aug 21, 2008.

  1. tkearn5000

    tkearn5000 Member

    I am new to the forum, and will be starting valcyte soon. I was found to have high titers of EBV 1:1280, and HHV6 1:640. I have found alot of posts about valcyte, some positive and some negative. I was wondering of those who have taken it, what tests you had done before beginning treatment to confirm a viral infection? Also, what was the outcome of your treatment?
  2. ladybugmandy

    ladybugmandy Member

    i am glad you are trying this protocol..just remember to be very patient as you will likely get worse for a while when you are on the drugs.

    i did not experience sustained improvement on valcyte alone but am experiencing improvement with valtrex + valcyte. i have been sick for over 15 years!

    i heard recently that valtrex is proving to be better for EBV....

    remember to drink lots of water!

    may i ask if you are under the care of a CFS specialist? that can make a difference.

    good luck!
  3. tkearn5000

    tkearn5000 Member

    Yes, I am seeing a specialist in CFS an FM. I am also taking anti viral supps, as well as immune globulin injections to improve my immune system. I understand there will be a rough detox period, but i'm hoping that the end results will be worth it.
  4. ladybugmandy

    ladybugmandy Member

    may i ask how long you have been sick and how old you are? that can make a difference in how long it takes to respond.

    also, you can track your progress with antibody tests, RNase L tests, elastase, and other things. Perhaps your doctor will do this.

    you will find lots of information on this board and montoya's valcyte study should be out early next year.

    best of luck!!!
  5. tkearn5000

    tkearn5000 Member

    I am 23, and first got mono about 5 years ago.It took a few months to get over, and I may never have fully recovered. I really started getting sick with CFS in april of 2007. It happened very suddenly. I can remember the exact day it happened, and what I was doing when it hit. I also had a bad cold/flu bug at the time. I have had brain fog constantly since then, along with food sensitivities, fatigue, trouble sleeping, lack of energy, and skin and eye irritation(among other things). My doctor has done some immune tests, and found that my IgG levels were low, as well as some other anti body markers. That is why I have started the injections. We will be monitering the titers to see what affect the valcyte has.
  6. ladybugmandy

    ladybugmandy Member

    hello. you are young and have not been sick very long..i would say you have a great prognosis.

    please keep in mind that i think they are beginning to find that valtrex is better for EBV than valcyte. (valcyte would be used for HHV6)

    i did not seem to respond to valcyte but am responding to valcyte + valtrex together.

    i wish you could see dr. a. martin lerner of michigan. he is the world's best at treating CFS with antivirals, with over 20 years' experience.

    best of luck
  7. tkearn5000

    tkearn5000 Member

    I'm actually going to a FFC here in pittsburgh. I know they base some of their treatments on Dr. Teitlbaum's work. The doctor here seems to be good, and they are helpful with insurence problems. They actually helped me get my Valcyte for free straight from the company. Hopefully he'll work out.
  8. ladybugmandy

    ladybugmandy Member

    I have heard some good things about some of the FCC clinics. i don't know what your financial situation is, but they try and sell you a lot of supplements.

    if i were you and lived just 4 hours from dr. a. martin lerner, i would go see him. why not see the best? he also takes medicare and bluecross. he is now recognized as the world leader in antiviral therapy for CFS.

    either way...i wish you the best of luck!

  9. acer2000

    acer2000 New Member

    I had a HHV6 titer of 1:640 on a few occasions, and lower on others. I have never been positive for EBV or CMV. My EBV shows past infections (no elevated EA) and my CMV IGG and IGM shows I haven't been exposed. I did Valcyte for about 4 months with Dr. Lerner and I had no response. Finally, I had to be taken off because if kept making my Liver enzymes go up, even at the lowest dose... I'd say the people who respond the best to it are the people who meet Dr. Montoya's strict criteria of CFS following mono, with very high HHV6 and EBV titers consistently and "viral" symptoms. However, I am sure there are others. It sounds like you are in that camp, so it sounds like its worth a shot!
  10. sascha

    sascha Member

    i was on valcyte through Dr. Montoya 1/1/08-6/6/08. my HHV6 started at over 10,000 (VERY high), and another virus (HSV1 i think) also was very high. i have consistently tested negative for EBV. my last testing in late May showed my HHV6 came down to just over 1000, and my HSV1 came down to within reference range. BIG accomplishments.

    i have had CFS for 8+ years; am now 66.

    the valcyte was a rough ride for me, but do-able. some people don't have strong reactions. Dr. Montoya told me that that doesn't necessarily mean valcyte isn't working if you don't take on a lot of negative reactions.

    post valcyte, i was put on valtrex, which i am currently taking.

    my condition has changed for the better, but it takes a long time to come back from the number valcyte does on you--Dr. Montoya says to plan on 12 months to rest as much as needed, and not to fully assess its effects until then.

    But- i AM better- feel less sick as such- have periods of relative normalcy, and it's a great joy when that happens. the main valcyte legacy is my weakness- lost muscles at quite a rate. i long for time i can start to regain strength through exercise. had good sign lately- i was able to do my own laundry- hadn't been able to for over a year.

    prepare for possibility of needing to withdraw from most life activities (based on my own experience- i became like a hibernating bear, with temperament to match). and don't be surprised at any reactions that come down the pike, including psychological! just know there's an end coming closer and closer, and with your recent onset and young age, you may have the best of possible outcomes. i wish you the best- keep in touch- Sascha
  11. ladybugmandy

    ladybugmandy Member

    sascha i am very very happy to read about your improvements. any improvement, in my book, means hope.

    you are definately right on....patience is the name of the game. the kind of patience you never dreamed you had! lol

    as i mentioned on this board, i am about 10-15% improved so far and its been a long, hard road even to get to this point.

    it is so very difficult not to push myself a little too much now, now that i can see friends for a little while or do some housework. i think i have overdone it a few times and felt worse later.

    i yearn for the day when the fog has lifted a little more. coming out of years of HE** that no one can understand will be strange to say the least but i am hoping it will give me more perspective and a new lease on life.

    i wish there was some way to convey the suffering i have gone through and still go through, to the people around me. i have always seemed failry normal from the outside during the illness so most people just can't seem to empathize.

    ktearn...sorry to repeat myself...but please do consider dr. lerner. if you feel your situation is viral, you cannot go wrong with him.

    onwards and upwards!

    [This Message was Edited on 08/23/2008]
  12. porchswinger

    porchswinger New Member

    Hi sasha,

    I started Valcyte around the same time that you started it. I took it for about 25 weeks until Montoya spoke at the conference and said there was no difference in fatiuge between those taking the valcyte and those taking the placebo.

    I am confused. Why are the doctors still perscribing the drug if it doesn't work? CFS symptoms come and go and change almost as much as the weather. Sure some people get better while (or after) the valcyte, but according to the study, those taking valcyte don't do any better than the placebo group. So why are the doctors still perscribing Valcyte?

    Anyway, I am glad to hear you are feeling better. I wish you all the best.

  13. porchswinger

    porchswinger New Member


    My advice: Don't take the valcyte unless and until there is scientific evidence that it works. I know you want to get better now. So did I. I greatly regret taking the valcyte because I am worse. The last time I had blood tests in mid june, many numbers (alt, hemoglobin, and some others) were slightly out of range. I felt sick and exhausted. I have been off for about 2 months now and I still feel much weaker and more tired than before the valcyte. It did a real number on me. When you have CFS, any kind of stressor-- physical or mental-- takes a bad toll.

    What ever you decide good luck. Just thought I'd give you my two cents.

  14. ladybugmandy

    ladybugmandy Member

    i'm not saying it's the answer for everyone, but dr. lerner feels that the main problem with dr. montoya's protocol is the short length of time his patients took the drug.

    also, dr. lerner uses valtrex too, if there is EBV. valcyte is now known not to be as effective for EBV as valtrex (according to a very recent conversation with dr. ablashi).

    i also did not improve on valcyte alone but am very very slowly improving on valtrex + valcyte with dr. lerner's formula.

    for a while, it was hard to be sure improvement was happening because it seemed so minute, but i just had my RNase L tested and it has gone down to 74. it was almost 2000 before antiviral therapy.

    dr. montoya' study did show a trend towards improvment in some aspects of CFS, such as the cognitive.

    is there any way you could see dr. lerner?


  15. Timaca

    Timaca New Member

    There are some posts at of people's journeys on valcyte.

    porchswinger~ I'm sorry that the valcyte made you much worse. Do you know if you were tested for other pathogens, such as mycoplasma pneumonia, enterovirus and chlamydia pneumonia?

    Valcyte did help me. I'm not yet well, as I'm also battling other pathogens, like Cpn and possibly enterovirus...but we are doing our best to identify the various pathogens and treat them.

    Currently I'm on acyclovir for viruses and doxycycline for Cpn.

    Best, Timaca
  16. stschn

    stschn New Member

    Doctor Montoya can help you with the deconditioned problem. When I spoke to him about that which perhapes is worse for me do to my advance years 71 next month. He suggested that I call the PFL. I did and I then enrolled in their program. They only have a small staff and most of that staff are doing research so it only through referral from a few doctors are people accepted into the program. All the work is directed by phone or email thank God-- it's more than enough to make the trip to Stanford. I have not completed the full program but to date I am very happy with the results. I understand that Dr. Montoya suggested this program during the join meeting of the Valcyte trial people.
    [This Message was Edited on 09/02/2008]
  17. waltz

    waltz New Member

    The study was not unsuccessful. It does not say there is no difference between drug and placebo. It does sound like it says the difference did not reach statistical significance on the overall physical level but it did reach significance on the cognitive level. There is a difference between those two sentences.

    The smaller the number of people in the trial, the larger the difference between drug and placebo group needed to be statistically significant. Statistical significance is also put at a cutoff of 95% chance that the results are not due to random chance. If the numbers came out showing a 94% chance, the results would still end up being not showing statistical significance.

    Dr. Montoya says it was successful. And patients are still improving. And the placebo group did not get better.

    So I wonder why they didn't have more patients because it sounds like having a small trial runs the risk of shooting the self in the foot by statistics. And why they didn't unblind it later and continue following patients for longer if they are still improving to this day.

    Although it does sound less extreme results than was made to sound by the news and preliminary paper.
    [This Message was Edited on 09/02/2008]
  18. ladybugmandy

    ladybugmandy Member

    hello. i think the reason they didn't do a larger study was because only so much money was offered by Roche. the company probably expected better results because montoya's original patients improved dramatically.

  19. Lichu3

    Lichu3 New Member

    publishing not just because of analysis but to allow people to recover more if possible before publishing.
  20. gasolo

    gasolo New Member

    I was on Valcyte for 7 months. I was much worse following the valcyte treatment then before I started the medication.
    I've been off the medication for almost one year. My improvement off the medication has been slow but progressive. My cognitive function has returned 100 percent. Presently I'm close to 85 to 90% of my pre csf physical function.

    It appears to me that recovery for some takes a long time. If I were to measure how effective Valcyte was after 6 month following discontinuation of the drug, I would have been very disappointed.

    I agree with lichu3 that Montoya is probable waiting to see how many patients continue to improve with longer follow-up


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