Need some Valcyte (Valgancyclovir) input Plz!

Discussion in 'Fibromyalgia Main Forum' started by copi2k, Dec 6, 2012.

  1. copi2k

    copi2k New Member

    Hey there,

    well i dont know exactly how to start here. Im sick since i am 23 years old, now i am 27 years old. 4 years of sickness are really exhausting. 1/2 year after i got sick, i was diagnosed with lyme disease with following co infections: bartonella, mycoplasma pneu, chlamydia pneu. .
    i was treated with several protocols which included different combinations of antibiotics. besides that, i've taken supplements and probiotics and have done some detox with activated charcoal and chlorella.
    this year, there was no more improvement on antibiotics so i stopped them, nothing happend after stopping antibiotics. i am left with a mononucleose-like feeling and an mild/moderate encephalopathy / encephalitis (brain fog).

    2 weeks ago i have done some lab tests on herpes viruses, the result was, that there is a latent EBV and HHV6 infektion and a highly ACTIVE CMV infection. My llmd prescribed me some VALCYTE.
    i have done some research on the internet and am afraid of taking the valcyte.

    well thats why i am here, to ask you about your experience with valcyte. what side effects do you have on it? are they PERMANENT or TEMPORAL?

    yesterday i started with ma first pill of valcyte, so far so good, nothing happend, only a little bit sore today.

    thanks for your input

    [This Message was Edited on 12/07/2012]
  2. MicheleK

    MicheleK Member

    I am on Valcyte. 3 grams a day. The first week or so of taking it I felt sick after each dose. Then I got use to it.

    The only thing I have noticed is some tendency toward constipation.

    You have to drink a lot of water with Valcyte. I drink a gallon a day but I understand half a gallon is sufficient.

    What dose were you put on?
  3. copi2k

    copi2k New Member

    oh wow, 3 grams a day?? thats pretty much. i've read that you have to take 2x900mg max. My llmd put me on 2x900mg, actually im working up to that dose. im currently on 2x450mg and doing very good. today im working out, no dizzyness, no fatigue, i hope that this one will turn the corner.
    tomorrow i want to take 1x900mg and 1x450mg first for a few days, after bloodwork is done and all things are fine, i will up my dose on 2x 900mg for 3-4 weeks, after that 1x900mg daily.

  4. MicheleK

    MicheleK Member

    Drs. Montoya and Lerner use up to 6 grams a day in their patients.

    Epstien Barr Virus needs 3 grams a day to kill off. Of course many patients cannot handle higher doses of many medications so I some antiviral is better than no antiviral when you need it.

    I am happy you are doing well and feeling better.

    Do you have CFS?

  5. copi2k

    copi2k New Member


    strange that Montoya is treating EBV with valcyte, i thought he recomments valtrex for EBV which is big time safer than valcyte. but yea you're right ,its better to be on medication than off it, everybody has to make their own decision.

    I have CFS Symptoms yes, but im not that fatigued, i can go for a walk, go shopping, spend a day in the city, holidays etc. But my energylevel is at 50% from what it was before i got sick.
    im taking this stuff especially to reduce my cognitive dysfunction. like i said, my CMV antibodies are 10 times higher than EBV and HHV6. The antibodies of EBV and HHV were positive too, but it looks like they are in a latent stage.
    i've done a LTT (lymphocyte transformation test) on them. all scores higher than 3 are positive, EBV and HHV6 was 7 (and VZV), they seem latent. my CMV score was 65! highly positive..

    hope this one here is my last one to get well again like i was once.

    i think that CFS is caused by bacteria and viruses, i think montoya belives it is only caused by viruses. but if you hace chronic lyme or something similar, you just cant get well from only antivirals, you have to take some antibiotics.

    cfs is mainly caused by multisystemic infections, thats my opinion. sure, there are some people who have it because of there genes, but there are not a lot of them.
  6. MicheleK

    MicheleK Member

    I am so sorry. I am on Valtrex not Valcyte. My mistake.

    Lerner and Montoya use both Valcyte and Valtrex in combination. I am only on Valtrex. This proves my cognitive dysfunction. LOL

    I am glad you have 50% energy and hope it will build. For many years I too was able to function in life with the ME/CFS. Then I got Graves disease and later was exposed to toxic molds in my home. That did me in. I am now in the 10-15% activity level. Pretty most of the time in bed. But I got better once and I know it is possible to get better even from the depths of Hades. This illness is unpredictable in many ways and yet so predictable in other ways.

    Again, I am sorry for my error.
  7. skeptik2

    skeptik2 Member

    I have a fellow CFS friend who took the Valcyte for two years and became completely well from the HHV6, then took Valtrex for the EBV and is really highly active now. There was some "herxing", but nothing totally unlivable. The dose of Valcyte was 900mg 2x daily. Don't know the dose of Valtrex.

    I wish all of us could be tested for these viruses and bacterias and mycoplasma also. If all of the pathogens could be treated, maybe we'd get well. Just getting the testing in the location you live in is a challenge.

    The Rituxamab treatment studies going on now may hold some hope for us all if it turns out a majority of patients who have these pathogens get well.

    We need better testing and subgrouping of patients, then studies with treatments for each type of group.

    Let's hope 2013 gives us more answers from those researchers still slogging away at trying to find them for us!

    HOPEful New Year to you all.
  8. Mikie

    Mikie Moderator

    They are much more effective in dealing with Herpes-Family Viruses, especially HHV-6. I took Acyclovir for 1 1/2 years. Then, I took TF's and Heparin injections for excess fibrin in the blood. Chronic infections usually cause excess fibrin. You can read more about testing at HEMEX Labs. I also took Doxycycline off and on (pulsing) for 2 1/2 years for the mycoplasma infection which triggered my CFIDS/ME full blown 23 yrs. ago. FMS followed 13 years ago after an auto accident.

    We often have a number of infections and issues and require comprehensive treatments. If you are interested in TF's, you can call Customer Service at the store here and they can tell you which TF's target which pathogens. I actually ended up taking two different TF's.

    All these treatments got me to the point that I could work part time. Then, I got Sjogren's Syndrome and had to stop from the horrible fatigue. Since then, I did a year of peptide injections and my symptoms are gone, including arthritis in my hands and my hypothyroidism. A bad fall with a concussion set me back but I'm getting better again.

    Good luck to you.

    Love, Mikie