inquiring about valcyte

Discussion in 'Fibromyalgia Main Forum' started by kristys, Nov 7, 2008.

  1. kristys

    kristys New Member

    i am a 19 year old female who has been suffering from chronic fatigue syndrome for 3 years...the doctors did not know I had chronic fatigue syndrome and they simply told me I had Epstein Barr Virus. It wasn't until I did my own research a few months ago that I realized I have been suffering from Chronic Fatigue Syndrome. I have an appointment with a CFS specialist in two weeks and hope that he will help me with boosting my energy level. I stumbled upon valcyte in an online search and it has spiked my interest. I will definitely mention valcyte to my doctor but I am very skeptical about this medication because a lot of people apparently (going by this message board) have had horrible experiences with it. I do not want to take the valcyte and then wind up regretting taking it. I would love to hear stories from both sides. If you have had a negative experience with valcyte or even with valtrex could you please give me a detailed summary of your experience. On the other hand, if you have had a positive experience with valcyte and valtrex I would love to know what level of energy you had before taking the valcyte and what level of energy you have after taking it. For example, before taking valcyte where you completely bedridden, fucntioning on a low level, functioning pretty highly, etc? And could you please tell me about how you are feeling after taking the valcyte? Once again, it would be very helpful if you could include as much detail as possible. Thank you!
    -kristy
  2. ladybugmandy

    ladybugmandy Member

    hi kristy. it is very important to see the right doctor. to my knowledge, there is really only one doctor who knows the correct antiviral formula you will need - dr. a. martin lerner of MI.

    if you have only active epstein barr, valtrex is all you will need. if you have active HHV6 or CMV, you will need valcyte as well. if you have other infections, you may need antibiotics.

    since you have been ill only 3 years, you have an excellent chance at getting well again.

    i have been sick for over 15 years and started treatment with dr. lerner 8 months ago. before i saw him, i was almost completely bedridden and had zero quality of life.

    i am now improved about 25% and hope to keep improving over time.

    good luck
    love
    sue

  3. kristys

    kristys New Member

    you said you started treatment 8 months ago. what exactly are you taking? are you on the valcyte or the valtrex? or both?
  4. stschn

    stschn New Member

    I agree with Sue that given the right treatment you now have a good chance of improvement. What has been upsetting to me with the Valcyte treatment is the number of people that I know of personally that have had sucess on the drug and then dropped all contact with the MB and the rest of us that still deal with this illness. I am fortunate to be able to see Dr. Montoya at Stanford and while he does not have all the years of experience that Dr. Learner has he does have knowledge and the power of the name of Stanford. The Valcyte trial information that will be published early next year will go a long way to help us. I saw him on Wednesday and found that my viral titers are now all low. In Feb.07 when I first had lab work done with him they were all "off the chart". I forgot to ask for a copy of my lab work but I do know that my HHV6 which was over 1500 in 07 is now 30. I did the 6 months on Valcyte from August to February he then put me on Valtrex. Yes Valcyte was a very rough ride but it did give me congnitive improvement altho my energy level is still very low. I had thought long and hard about the possibility of having to go back on the drug but given what good it had already done I decided to go back on it if that was what he suggested. The decistion in part because of some of what Sue had posted. The good news is that on this visit he trippled my Valtrex a drug I've had no side effects from so far. He also said that he is seeing some people improve in all areas after Valcyte some getting cognitive recovery first with the rest comming much more slowly and some just no improvement at all. Given my cognitive improvment I do believe I can improve in other areas over time. Kristy I'm much older that you and I have had this illness for almost 21 years now. If you have to have this DD honey better now than then. All the best, Joyce
  5. Timaca

    Timaca New Member

    As mentioned in other posts, valcyte is necessary only if you also have high antibody titers to HHV-6. There is lots of info on HHV-6, including a patient's forum at www.hhv-6foundation.org.

    It is best to get tested for HHV-6 at Focus Diagnostics Lab in CA. IgG titers of 1:320 or higher may indicate active, chronic infection.

    Best,
    Timaca
  6. ladybugmandy

    ladybugmandy Member

    i am on both valcyte (450 mg every 48 hrs) and valtrex (1 g 4 times a day).

    i am very glad to read these posts. it has given me yet another much-needed boost of hope. have had a bad day.

    they say cognitive improvement comes first and indicates that one is on the right treatment but for me, energy seems to be improving but cognitive function (the only thing i really care about) is not improving as much as i had hoped so far.

    i would say dr. montoya is someone i would see if i could not see dr. lerner. dr. montoya is very open-minded and i would imagine he is learning about CFS and antivirals very quickly now.

    love
    sue