Stanford DR has success with antiviral/ valcyte

Discussion in 'Fibromyalgia Main Forum' started by winsomme, May 17, 2006.

  1. winsomme

    winsomme New Member

    there is an infectious disease DR at Stanford University Hospital that is having success with the Antiviral called Valcyte or valgancyclovir.

    the article is actually from Britain and talks about a DR Kerr who is doing gene expression studies, but it also talks about this DR at Stanford:


    By JEROME BURNE, Daily Mail 11:33am 16th May 2006

    A drug used to treat herpes infections has produced a dramatic
    improvement in
    patients severely affected by ME, or fatigue syndrome.
    Sufferers who for years had been unable to leave their homes now
    report being able
    to resume normal life.

    This is a remarkable result for a treatment for this complex and
    controversial
    disorder that is thought to affect as many as 240,000 people in
    Britain and for
    which there is no cure.

    The results, reported at a scientific conference earlier this month by
    Professor
    Jose Montoya of Stanford University in California, involved 12
    patients who had been
    given the powerful drug valganciclovir, which targets the human herpes
    virus
    (HHV-6). Nine of the patients experienced a great improvement.

    One of Montoya's cases was onetime champion figure skater Donna
    Flowers, now aged
    50 and working as a physiotherapist, who lives in California's Silicon
    Valley.

    "Two years ago, I was spending 14 hours a day in bed and my brain was
    so fogged I
    couldn't write a letter," she says.

    "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."

    However, she is now back at work, treating young Olympic hopefuls, the
    nanny has
    gone and she's just started ballet lessons.

    'Soaring energy levels'

    "When Donna came to see us, her energy levels were around 10 per cent
    of what she
    considered normal,' says Montoya. "Today, she is functioning at 90 per
    cent."

    One patient who could barely walk around the block is now cycling
    three hours a
    day, while another who could not even get down the stairs to breakfast
    is now up
    every day at 7am.

    The professor reported his findings at a conference on the HHV-6
    virus, which was
    held in Barcelona earlier this month.

    While it's well known that some patients with CFS have signs of
    various viral
    infections, this is the first time that treating one of the viruses
    has been shown
    to be so effective.

    "I was amazed by the results," says Montoya, who runs the infectious
    diseases
    clinic at Stanford. "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 like
    as dramatic. It was pure serendipity."

    'Careful monitoring'

    Valganciclovir is licensed to treat HHV-6 infections of the eye, which
    can affect
    transplant or cancer patients with severely weakened immune systems.

    HHV-6 is not the same as the herpes virus responsible for cold sores. Most
    commonly, it causes roseola infantum in children, who get a fever and
    a rash.

    "I have treated hundreds of immune compromised patients with the drug,
    so I am very
    familiar with it," says Montoya. "It can have serious side-effects
    including
    anaemia, so you have to monitor patients very carefully. But so far
    none of the CFS/
    ME patients have reacted badly to it."

    All the experts agree that a lot more research will have to be done before
    valganciclovir can be widely used as a treatment.

    "There is a long history of linking CFS/ME with some sort of viral
    infection," says
    Charles Shepherd, a medical advisor to the charity Action For ME.

    "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."

    Montoya agrees: "These were individual cases and it is always possible
    the results
    were due to a effect," he says.

    However, 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 valganci-clovir could eventually provide an effective
    treatment for some cases of CFS is just part of a wider picture. Over
    the past year,
    genetic research has provided a new understanding of the disease that
    could
    eventually lead to new therapies.

    For years, the conventional view has been that there is no known
    cause, no way to
    diagnose it and no effective treatment.

    Some doctors and health workers believe it is the result of social and
    psychological factors - and best treated with psychotherapy and exercise.

    Now it is becoming clear these patients have "a disturbance in their
    body's natural
    way of dealing with infection," says Malcolm Hooper, Emeritus
    Professor of Medicinal
    Chemistry at the University of Sunderland.

    "Anti-viral drugs such as valganciclovir may be allowing it to re-set
    itself."

    Hooper was one of the speakers at a conference in London for ME
    Awareness Day on
    Friday. Another speaker was Dr Jonathan Kerr of St George's Medical
    School in
    London, who recently published groundbreaking work on the links
    between genes and
    CFS/ME.

    "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," he says.

    The hope is that a relatively old drug, called interferon beta, can
    help to restore
    the balance. A controlled trial is planned.

    What researchers such as Kerr find disheartening is that there seems
    to be little
    official support for this biological-based research in Britain. The
    bulk of the
    funding has gone to the psychological approach.

    But many hope a parliamentary inquiry looking at the progress of
    CFS/ME research
    will find that research involving genes, viruses and the immune system
    would benefit
    patients.

  2. winsomme

    winsomme New Member

    here is his contact info:

    Infectious Disease
    300 Pasteur Dr
    A175, MC 5309
    Stanford, CA 94305
    (650) 723-6961
  3. winsomme

    winsomme New Member

    this wasn't a study, i don't think.

    the Dr Montoya portion of this article wasn't a study. this is just an infectious disease DR who has started treating people with CFS with this antiviral Valcyte.

    i'm not postitive about this, but i think anybody could make an appointment with this DR because he has a practice at Stanford Hospital.
  4. winsomme

    winsomme New Member

    i still think it was just patients who had CFS and came into his clinic for treatment.

    maybe i'm wrong.

    the thing about large scale trials is that they usually takes years to complete and don't necessarily come to any helpful conclusions.

    we need large trials, but until then we also need DRs that are willing to try and treat us.

  5. ulala

    ulala New Member

    bumping
  6. ANNXYZ

    ANNXYZ New Member

    about this possibility . It seemed to make a significant difference for those involved . Most drugs do nothing
    for CFIDS patients . This is good news .
  7. mrdad

    mrdad New Member


    Hello!!
    There is another Post that you will find on the first page today regarding the same subject matter.It is Posting under the title "Valganciclovir Helps with energy with CFIDS" Thanks
    MRDAD

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