Discussion in 'Fibromyalgia Main Forum' started by karinaxx, Jul 8, 2006.

  1. karinaxx

    karinaxx New Member

    Just wanted to know if anyone has experience wich the use of Isoprinosine, also called
    Ob anybody has any knowledge about this new report about valganciclovir?

    I add the report here, so you know what I am talking about.

    A Herpes Drug May Make Energy Soar for Chronic Fatigue Syndrome Patients
    by Editor


    A drug normally used to treat herpes infections has produced a dramatic improvement in patients suffering from Chronic Fatigue Syndrome (CFS). Patients that had formerly been house-bound report being restored to normal life activities. CFS affects about 1 million patients in the United States, and about 240,000 in Britain. There is no cure for CFS, only ways to manage the condition.
    The London Daily Mail newspaper reported the study results, which were delivered at a scientific conference earlier this month by Professor Jose Montoya, M.D., an infectious disease researcher and Associate Professor at Stanford University. The study took place in California, and involved 12 CFS patients who were given the drug valganciclovir, which targets the human herpes virus (HHV-6). Nine of the 12 patients reported a great improvement in their condition. The professor’s findings were reported at a conference on the HHV-6 virus held in Barcelona earlier this month.
    Donna Flowers, a onetime champion figure skater now aged 50 and working as a physiotherapist, was quoted in the Daily Mail as saying “Two years ago, I was spending 14 hours a day in bed and my brain was so fogged I couldn't write a letter. I wasn't functioning at all. I'd been diagnosed with chronic fatigue, but the doctors didn't have anything to offer. I had to employ a full-time nanny just to look after my three-year-old twins.” Now she is now back to coaching young Olympic hopefuls, has fired the nanny, and has started taking ballet lessons.
    Participants Report “Soaring energy levels”
    “When Donna came to see us, her energy levels were around 10 per cent of what she considered normal,” Professor Montoya was quoted as saying. “Today, she is functioning at 90 per cent.” A patient who could hardly walk all the way around the block is now bicycling for up to three hours each day. Another patient who could not even leave the bed now comes to breakfast every day at 7:00 AM.
    CFS patients often have signs of pre-existing viral infections, and viral infections have even been thought to be “triggering events” for the onset of CFS in some patients. This is the first clinical study to indicate that treating one of the viral infections would also be effective in the underlying CFS symptoms.
    “I was amazed by the results,” Professor Montoya was quoted as saying at the infectious diseases clinic he heads at Stanford University. “Donna was sent to me because high levels of another virus (Epstein Barr) had been detected in her system. I found high levels of HHV-6 virus as well, so I treated her with valganciclovir to bring down her viral load. I'd hoped it might help a bit, but I didn't expect the results to be anything so dramatic. It was pure serendipity.”
    Careful Patient monitoring is needed
    Valganciclovir is a prescription drug approved for treating HHV-6 infections of the eye, which can occur in individuals with severely weakened immune systems, such as transplant or cancer patients. The HHV-6 virus is not the same as the herpes simplex virus that causes cold sores. Most commonly, it is associated with a condition called roseola infantum, a fever and a rash in children.
    “I have treated hundreds of immune compromised patients with the drug, so I am very familiar with it,” stated Professor Montoya in The Daily Mail. “It can have serious side-effects including anemia, so you have to monitor patients very carefully. But so far none of the CFS/ ME patients have reacted badly to it.” These preliminary results will have to be studied in many more patients before the drug valganciclovir can be used as a standard treatment.
    Charles Shepherd, a medical advisor to the charity Action For ME (CFS is known as ME in England) told The Daily Mail that CFS/ME has long been associated with prior viral infections. “About 75 per cent of cases begin with an infection which the patient never properly recovers from, so it is quite likely infectious agents lurk in the body. While the role of HHV-6 is certainly plausible, we will have to wait for a larger trial that is properly controlled.”
    Professor Montoya commented on the possibility that the results were just due to a placebo effect. He told the newspaper “that is unlikely because we saw a worsening of each patient's condition around week three to four of the treatment, probably when infected cells were dying off. After that came the improvement. That is not a pattern you get with placebos. But we don't know yet why the drug makes such a difference.”
    The possibility that a drug has been found that could eventually provide an effective treatment for some patients with CFS is just one part of the puzzle being studied by researchers. Genetic research is also providing clues that may lead to new treatments and therapies.
    Traditionally, it has been assumed that CFS had no known cause, no direct diagnosis, and no known cure. Some practitioners considered CFS symptoms to be “all in the head,” and recommended psychotherapy as the primary treatment.
    Now research is showing that these patients have “a disturbance in their body's natural way of dealing with infection,” Professor Malcolm Hooper, Emeritus Professor of Medicinal Chemistry at the University of Sunderland told The Daily Mail. “Anti-viral drugs such as valganciclovir may be allowing it to re-set itself.”
    Dr Jonathan Kerr of St George's Medical School in London, a published researcher on the interplay between gene activity and CFS/ME, told a recent symposium that “We've found that the genes in patients' white blood cells — a key part of the immune system — are switched on and off in an abnormal fashion.” A controlled research study on interferon beta, a relatively old drug, is in the planning stages to see if it can help restore the genetic balance. It is hoped that studies involving the interplay of viral infections, genetic action and immune system functioning will provide new options for the treatment of CFS patients and the management of CFS symptoms.

    [This Message was Edited on 07/09/2006]
    [This Message was Edited on 07/09/2006]
  2. karinaxx

    karinaxx New Member

  3. mrdad

    mrdad New Member

    I have not had personal experience with any of these drugs

    however, a gentlemen in a support group I attended had

    been under the treatment at Stanford by DR. Montoya.

    He was being treated with Vanclanciclovir also known as

    Valcyte ( an anti-viral drug) He at the time had exper-

    about 70% improvement. I believe Montoya is conducting

    further studies. Gives us with CFS and maybe FM too some


    Best wishes,
  4. karinaxx

    karinaxx New Member

    yes indeed,some hope.
    funny that not more people have any experience with these Anti virals.
    and by karina
  5. karinaxx

    karinaxx New Member

  6. mrdad

    mrdad New Member

    I think one of the reasons there has not been more re-

    sponse to your Post so far or individual experience, is

    that the treatment is so new. It has not had enough ex-

    poser or definition to hve drawn people into wider treat-

    ment situations. It's in a broader content is still un-

    determined as far as I can see. More investigation

    will hopefully point to the possiblities for Valcytes

    medical applications.

    Have a good day (or evening)
  7. karinaxx

    karinaxx New Member

    in my part of the world it is actually late in the night.
    yes, i think you are right, but relatively new. I guess i have to find the message board for AIDS forum, to get to know more about these anti virals. from what i understand are they used widely in immune deficient patients and organtransplant patients.
    again by and have a good day
  8. shanwill

    shanwill Member

    I too am trying to see if this is perhaps a good avenue for me to take - now getting my GP on board is another question. I have done some research and found this link to be interesting and hopeful.

    I would like the hear from someone that has TRIED this route.......

  9. deliarose

    deliarose New Member

    and neither was willing to prescribe it. Apparently, it has potentially serious side effects...

    However, the FFC docs use an anti-viral drug (Valtrex) to treat some of the herpes family infections.

    I'm not an FFC patient, but I've been taking Valtrex for a couple of weeks and I see a big improvement.

    Hope this helps.


  10. mrdad

    mrdad New Member

    Please accept my apology for repeatedly getting your name
    wrong! It must be the "brane frog" or something.

    If you contact you will get more de-
    tailed info. on Valganciclovir or Valcyte. This is a U.S.
    Department of Health website where medicinal info. on this
    drugs are examined. I believe dosage etc. is a critical
    factor in the Stanford regement discussed earlier.

    Stay cold in India ( if you can )
  11. cbella

    cbella New Member

    I haven't tried the new drug, but a dr. in Florida that does "phone visits" prescribed Valtex for 6 weeks after getting my lab results back. It was very expensive, although my insurance reimbursed most of it, but it didn't help me at all. I was supposed to call the dr. back, but I got discouraged about the whole thing. Hope this info helps a little...........cb
  12. karinaxx

    karinaxx New Member

    no Problem about the name. i do the same. by the way, love yours.
    thanks for trying to get some info here on this.
    not so cool
  13. karinaxx

    karinaxx New Member

    thnks for your intrest.
    Dr.cheney has refered to Immunovir, but i dont remember where i have it stored.have t search.
    let you know later.
    i just wanted to have some first hand experience from someone, to see if it has side effects and it helps.
    would be good to check on another baord, dont have the energy in the moment.
    love karina
  14. karinaxx

    karinaxx New Member

    will check it out.
  15. karinaxx

    karinaxx New Member

    thanks. ok one down.
    sorry to hear it did not help.
    are you suffering from CFIDS or FM ?
    have your blood test whown any viral infection like HHV6?
    love karina

[ advertisement ]