Valcyte Success?

Discussion in 'Fibromyalgia Main Forum' started by gettingwell, Jun 10, 2008.

  1. gettingwell

    gettingwell New Member

    I am so confused . . .

    Who exactly has gotten well from Valcyte? Only the 10 people in Montoya's study? Are there people out there who have actually recovered?

    Do you know any success stories?


    LISALOO New Member

    I'm on day 1 and am interested in this. This is my last chance at health. I've tried everything else.
  3. gettingwell

    gettingwell New Member

    good luck to you! we're both young, so maybe our bodies can handle it well . . . i read that you also took valtrex, why did you stop? who is your doctor?

  4. Timaca

    Timaca New Member

    I have made improvements on valcyte (significant improvements). However, viral illnesses are just part of my problem. I'm now on doxycycline for Cpn.

    For my story go to

    I'm Timaca there too, and you can follow my viral test results and valcyte journey in the patients forum there.

    Good luck to all of you.

  5. gettingwell

    gettingwell New Member

    Hi, I've been feeling so well since going off Valcyte on Dec 30th, that I haven't posted in a long time. Leg/foot pain and weakness is the only problem that has continued with a vengance. This was a problem for me before Valcyte, got much worse while on Valcyte, and continues to be bad, 4 months off Valcyte. I'd be curious to hear what your doctor has to say about it. I'm also on Cymbalta for the pain, and it's brought some relief, on bad days I also take prescription Motrin.
    Glad to hear that you'll be going off Valcyte fairly soon. I found it to be a really hellish drug, but it helped me quite q bit.
    Take care,
  6. erica741

    erica741 New Member

    I have been on this board for 2 years and recall only one Valcyte success story. However, I do recall a few people reporting improvement while they were on Valcyte, and then they stopped posting. In those cases I assume the person recovered and has resumed a normal life.

    I took Valcyte for 6 months under Dr. Montoya (last July-Jan), and did not recover. Montoya took me off after 6 months, hoping that I would recover with continued rest. But when I saw him next 3 months later, I was still sick, my EBV had skyrockted, and Montoya wanted to put me back on Valcyte.

    At that point (April), I decided to hold off on resuming Valcyte because I had just gotten a postive lyme test from Igenex lab. Less than 2 weeks later, I saw one of the most reputable LLMDs in CA, who diagnosed with lyme and babesia (a bacterial co-infection). For now, I have opted to undergo antibiotic treatments in lieu of going back on Valcyte.

    From what I have read during the past 2 years on this board, the anecdotal evidence indicates that more patients have gotten worse than better on Valcyte (that was certainly the case with me). However, Montoya will be releasing the results of his latest Valcyte trial within the next few months. If those results conclusively prove the effectiveness of Valcyte, then I suppose the science will speak for itself.

    I do wish the best to those of you who recently started Valcyte. Hopefully, by the time the Stanford trial results are released, you will be able to compare them to your progress and then make a better informed decision then I did mid-treament.

  7. gettingwell

    gettingwell New Member

    How are you feeling now that you are on the antibiotics? Have you seen any change in symptoms?

    Best of luck to you.

  8. erica741

    erica741 New Member

    I have been on high doses of 2 antibiotics since early May. Like with Valcyte, I was told to be prepared for a herx. After my intense hexing with Valcyte, I was like "whatever".

    Then Memorial day weekend, I started getting super exhausted, and for the past week, have had increasing fatigue, dizziness, nausea, headaches,fever, chills and clamminess. It's not yet quite as bad as on Valcyte, but very close.

    However, my LLMD assured me that herxes on antibiotics should not last months like on Valcyte - if so I should let him know and he will prescribe something to reduce my herx symptoms or even switch my antibiotics.

    I am on zithromax and minocycline, both apparantly notorious for horrible herxes. But like with Valcyte, I don't care how awful I feel if it means I have a better chance of recovery. I have been disabled and had no life for 2 years. I really have no other choice but to bear this stuff in hopes of getting my life back.

  9. erica741

    erica741 New Member

    Your pediatrician warned YOU about having to put up a fight with your insurance company???? Doesn't she you know you by now? :)

    IV antiobiotics are really intense! Why you going that route instead of the oral? Did your daughter ever het updated lyme tests or are you still going on a clinical diagnosis and based on her indeterminate Igenex labs?

    I saw recently that you joined another discussion board for Lyme. I am on that board too and have posted a lot about my lyme treatment so far. When I saw your username last week, I started a "welcome" thread to you! Log on soon and check it out :)

    Anyway, we should try to have these lyme conversations "over there" as to not offend anyone here...


    [This Message was Edited on 06/10/2008]
  10. Timaca

    Timaca New Member

    I was on IV antibiotics for 6 1/2 months, along with oral antibiotics. IV antibiotics are serious business, as well as expensive (~$7000 per month--including labs--this was before generic rocephin--so it should be less now).

    I would also get your daughter tested for Chlamydia Pneumonia, for if she has that a certain protocol is often used. (see:

    Please don't jump at a lyme diagnosis...take your time making sure your daughter has been tested for the viruses and Cpn. You cannot tell by symptoms what she has...lyme, viruses, Cpn, all give the same symptoms.

    Dr. F at Columbia Univ. Medical Center, does NOT see IND bands as positive bands. He throws them out. He is probably the best lyme expert in the country....

  11. dhamma

    dhamma New Member

    Hi, My daughter and I have both gotten well from Valcyte. After about a year on the Teitlebaum protocol, with some improvement, then a few rounds of antibiotice, also with some improvement,our Dr decided to try Valcyte. My daughter was on it for 9 months, and now she's totally healthy. I was on it for 6 months, and I'm doing really well. We've both been off Valcyte for about 5-6 months. It was a really rough treatment, but I'd do it again if I ever get as sick as I was before treatment. It seems to me that it works best on people that clean up other health problems before going on Valcyte,(cpn, intestinal bugs, yeast, nutrition, etc).
    Take care,
  12. Timaca

    Timaca New Member

    gettingwell~ The person I know that got totally well on valcyte (after being quite ill for many years) had high antibody titers to only HHV-6 and EBV. Thus, it would make sense that treatment with valcyte helped that person.

    Kathy~ Good for you for pursuing all that is making your daughter ill. In my case, and it seems like your daughter's case, you have to go after several pathogens.

    If Cpn is part of the problem, then you might want to consider the combined antibiotic protocol recommended on the Cpn help website. It uses azithromycin, Doxy, and a flagyl pulse. The thought being that just one antibiotic won't rid the body of the different life forms of Cpn.

    The good thing is that these antibiotics are often used to treat lyme and other tick borne diseases. I would not jump into using IV rocepin. It's expensive, risky, and time consuming (it took me an hour and a half daily to infuse--start to finish). Then you can't get in a pool, and must be careful when showering.

    Valtrex and adding in a different antibiotic to help combat the Cpn might be the smartest move at this point in time.

    I relapsed after IV rocephin. Probably because the viruses were active and I didn't know it at the time...and perhaps because Cpn was an issue. I don't know for I hadn't been tested for that until much later.

    Go after what looks obvious from her bloodwork...don't go after the "maybes". Sounds like she has enough obvious stuff to treat for now.

  13. Timaca

    Timaca New Member

    Regarding what do you treat....treat the obvious. If there are sky high antibody titers to Cpn or HHV-6 or EBV, that's what I'd go after. Maybe even two things at once depending on the drugs needed. If there are "iffy" lab results, I'd ignore that for the time being.

    I made improvements on the valcyte, I am making improvements on the doxy. I'm not yet well, but I'm grateful that I'm moving forward....and I hope I don't go backward!

    I'm out of town for awhile now, but I'm sure we'll be in touch when I'm back in town.

    Best wishes to all,