NEED HELP...

Discussion in 'Fibromyalgia Main Forum' started by street129, Dec 13, 2009.

  1. street129

    street129 New Member

    I AM ASKING, if anyone taking this drug, VALCYTLE,
    well are you under supervions, i get this
    bit of news since i wanted to know what its
    good for and how its use, i have alot
    of this stuff in my cabinet, i have medicaid,
    im on SSI, so i do not PAY ANY MONEY at all.
    anyways on another baord i ask a question
    about it and this is what someone
    wrote, btw, i need a cfs dr, anyone knows a
    good one in new york besides susan
    levine., dr enlender is 760. i took 2
    of the valcyte, but i stop, becuse i dont
    have anyone to moniter me, i got these
    from my GYN dr. im glad that he did,
    i have 60 pills with 3 refill....here is
    what the person wrote...see below...
    i dont know what he ment by CBC and CMP,
    any one knows what that means...thanks also,
    i need to see AND
    to seen by someone and some one NOW!!!!!!!!!!
    Wheather A LYME DR LLDM OR CFS DR.

    I NEED TO PUT MY MONEY in THE RIGHT HANDS,
    I HAVE TO TALK TO SOME PEOPLE TODAY AND GET
    THE RIGHT PERSON FOR ALL MY ISSUES... READ
    WHAT SOMEONE ON ANOTHER BOARD WROTE ABOUT
    VALCYTLE,,,....I WILL DISCONITUE USING
    THEM UNTIL IM SUPERVISE.. THE LINK HE
    POSTD DO NOT WORK......WHEN HE SAYS
    YOU HAVE TO CHECK YOUR BLOOD WEEKLY,
    WHAT ARE THEY LOOKING FOR HIGH LIVER TEST,
    MY LIVeR RIGHT NOW IS AST...26...ALT.....29...
    SEE BELOW...I WILL GO PM HIM AND ASK HIM WHAT
    ARE THEY LOOKING FOR WEEKLY WITH THE BLOOD WORK,
    I NEED ASSISTNT BABLY.

    here's what he wrote:

    Valcyte is thought to be effective against
    HHV6, CMV, and EBV. In order for it to
    be effective, however, you need to
    complete a six month treatment without
    stopping once.

    You need to be VERY CAREFUL while on
    Valcyte and get your blood checked (CBC & CMP)
    WEEKLY otherwise you can risk death.

    For chronic fatigue, the EXPERIMENTAL
    (see Dr. Montoya's research: http://www.drpodell.orgchronic_fatigue_syndrome_hhv6.shtml)
    dosage is two 450mg tablets taken twice per day
    for three weeks. Then, one 450mg tablet twice
    per day for the remaining 6 months.

    Please don't take the drug without
    supervision from a doctor.


    NOW HAS ANYONE TAKING VALCYTLE AND HOW ARE
    YOU TAKING IT..IF ANY ONE IS TAKING IT,
    DO YOU SEE YOUR DR WEEKLY LIKE THE POST
    SAID...I NEED FEED BACK ON THIS DEEP TOPIC ....
    THANKS.. I TOOK FOR THE FIRST TIME 2 OF IT
    LAST NIGHT BUT SINCE MY GYN DR GIVE IT TO
    ME, I ASKED FOR IT, I WILL NOT CONTINUE
    UNTIL I FIND A DR. TO EXPLAIN THE RISK
    OF THIS DRUG..ANY THOUGHTS. THANKS


    [This Message was Edited on 12/14/2009]
  2. stschn

    stschn New Member

    do not take it without proper supervision from a doctor who nows what he/she is doing. you do need blood test very often once a week as I remember it (I took it in 2007.
  3. redhummingbird

    redhummingbird New Member

    I took it from January-October. My doctor had me get my blood drawn once a week for the first 3 weeks then every other week for a month then once a month.

    The reason why is to monitor liver functioning, white blood cells (so they don't drop too low), kidney function etc....

    It is important to take this under a doctor's supervision. There is a good website that talks a lot about Valcyte.

    We can't give out websites but if you google HHV 6 Foundation you can find it...

    Good luck!
  4. spacee

    spacee Member

    You might need to change the title of your post to Valcyte Help.

    But from what I have read on this board about it, you have a good doc.

    When you are on this med, any good doc would check you CBC and CMP often. And your liver enzymes. If they show any stress, then he would tell you to stop the meds.

    I really can't believe you found a doc who knows about the Montoya treatment. That is a rare find.

    Also, this is a very expensive drug (over $1,000 a month).

    Whether or not you want to try it is your call. It is a med that has done wonders for some people. But it does have to be monitored by bloodwork.

    Ladybugmandy has taken it.

    Spacee