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Dr. AzRa MaEl's perspective on XMRV and its treatment

Discussion in 'XMRV Testing, Treatment and Transmission' started by richvank, Feb 21, 2011.

  1. richvank

    richvank Senior Member

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    http://bit.ly/e4fmP5

    GORDON MEDICAL
    Innovative Healthcare

    3471 Regional Parkway
    Santa Rosa, CA 95403
    707.575.5180

    Greetings!

    This Update on XMRV
    is by Dr. AzRa Mael, MD:

    What is XMRV (aka Xenotropic
    Murine Leukemia Virus-Related
    Virus)? Does it cause Chronic
    Fatigue Syndrome? What other
    illnesses might it be associated
    with? How can it be treated?


    XMRV is the current name given to this recently
    discovered group of retroviruses that infects
    humans.

    It is a member of the third known family of human
    retroviruses, a Human Gamma Retrovirus (HGRV),
    and in time these viruses may be renamed HGRV.

    Human Immunodeficiency Virus (HIV) and Human
    T-Lymphotropic Virus (HTLV) are the other 2 families
    of human retroviruses that may be more familiar to
    some.


    XMRV was first discovered in association with
    prostate cancer in 1996. Only recently (2009) was
    the virus found to be strongly associated with
    Chronic Fatigue Syndrome by a group of collaborating
    labs, including Dr. Mikovits's lab at the Whittemore
    Peterson Institute (WPI).

    The presence of other closely related viruses
    (murine leukemia virus related-viruses or MLV-related
    viruses) was then independently and robustly
    confirmed by the Harvard / NIH / FDA collaborative
    effort headed by Dr.'s Lo and Alter in 2010.


    The family of viruses consists of multiple closely
    related viral mutations, which is typical of
    retroviruses. In studies, approximately 80-90%
    (perhaps more) of people with CFS have XMRV and
    closely related viruses, compared to 4-7% of
    controls.

    The strength of this association has led to the
    hypothesis that XMRV causes CFS.


    However, it is more complicated than that. In
    unpublished studies from Dr. Paul Cheney and
    Gordon Medical patients, approximately 40-50% of
    healthy family members and close contacts of people
    with CFS are infected with XMRV.

    XMRV alone may not be sufficient to cause CFS in all
    people, but it appears it may be a necessary
    contributing factor, possibly in combination with
    another undetected retrovirus, another infection, or a
    genetic susceptibility to XMRV.

    It is possible not everyone infected will develop
    disease in response to XMRV. In the case of HTLV,
    another human retrovirus, we see a similar pattern in
    that only 10% of infected patients develop clinical
    illness.


    Since the original CFS paper published in Science
    magazine in 2009, several research teams have
    questioned the research of Mikovits, Lo, and Alter,
    perhaps due to concern about the consequences of
    the presence of XMRV in the nation's blood supply,
    and the high cost of screening our blood banks.

    A recent flurry of papers attempted to
    debunk the XMRV research using the
    issue of possible mouse DNA contamination.
    The contamination concerns are generally
    valid, but the research done by the group
    for the Science paper, and the later paper
    by Lo and Alter had already taken steps to
    test for such contamination issues.


    The contamination arguments, claiming the positive
    results are due to mouse DNA, cannot explain why
    positive samples show an immune response to
    XMRV, or why XMRV can be cultured from samples.

    In addition, the samples were tested specifically for
    mouse DNA, in order to ensure there would be no
    contamination.

    The contamination papers are not relavant to the
    most important studies indicating the finding of
    XMRV in Chronic Fatigue Syndrome, and the
    existence of XRMV still stands firm.

    As of December 2010, the American Red Cross and
    international blood banks began banning blood
    donation from people with CFS. The government is
    currently working to develop a fast and accurate test
    for XMRV in order to protect the blood supply.


    In unpublished research XMRV has been found
    associated with multiple other illnesses, including
    chronic Lyme disease.

    It is associated with lymphoma, prostate cancer,
    inflammatory breast cancer, fibromyalgia, autism,
    Parkinson's, and Multiple Sclerosis, among other
    inflammatory conditions.

    There is no proof yet that it is causative, but it is
    being found in higher numbers than would otherwise
    be expected.


    ``````


    XMRV Testing


    Testing for XMRV has not proven easy. The Lo/Alter
    paper has shown there are many strains (mutations)
    of XMRV and related MLV viruses (such as PMRV).

    Different strains of the virus can only be detected
    using the most sensitive PCR probes and under
    exacting conditions, often requiring culturing of the
    blood sample for several weeks to increase the viral
    numbers to detectable levels.

    Testing is also complicated by the fact that XMRV
    can be undetectable in the blood, but may be found
    instead in organs such as the spleen, lymph nodes,
    and others.


    Additionally, as in some other chronic infections, not
    everyone who is infected with XMRV produces
    antibodies, so tests that rely on measuring
    antibodies can produce *false negative* results.

    Patients who are negative by PCR, may be positive
    by culture or serology/antibody, and vice versa.

    Dr. Mikovits is currently working on a way to detect
    more of the strains of the MLV viruses in the XMRV
    family, as well as faster and more sensitive tests for
    both antibody and DNA of the entire family of
    retroviruses.

    Patients who have tested negative for
    XMRV should realize that it is still
    possible they are infected, but it was
    not possible to find the infection in that
    sample on that day. Retesting on another
    day, or by another type of test, may give
    different results.


    Samples from Gordon Medical patients who
    participated in the XMRV study through WPI are
    being used to help in the development of these new
    tests.

    Dr. Mikovits is continuing to actively test any
    negative samples to ensure that any infections are
    found if evidence is present in the sample.

    When viral evidence is found, WPI is sequencing the
    genetics to discover whether it is in this new family
    of retroviruses.

    Dr. Mikovits stated that she expects to have a new,
    commercially viable test available by June of 2011.

    ``````


    Treatment Possibilities
    for the New Human
    Retroviruses

    Are there treatments for XMRV? Will they
    help people with CFS, cancer, or other
    illnesses?


    This is the hot topic that is still under investigation.

    Doctors at Gordon Medical, the Whittemore-Peterson
    Institute, and a handful of other centers across the
    world are actively looking at possibilities.

    At the time of writing, we know of approximately 65
    CFS patients with XMRV who have tried various
    combinations of three anti-retroviral (ARV)
    medications originally designed for HIV: tenofovir,
    zidovudine and raltegravir.

    Each drug has been proven to inhibit XMRV viral
    replication in in vitro (test tube) studies, and they
    are synergistic when any two drugs are combined.

    Dr. Joseph Brewer is one of the primary clinicians
    doing trials with these medications. Dr. Brewer and
    other CFS doctors report that after 6 months of use,
    approximately 20-30% of patients on ARV's have
    noticed mild to moderate improvements.

    Though these medications help some people, they
    are clearly not a complete solution for CFS and
    XMRV.

    There is still a lot to learn about what doses, what
    combinations, and what supportive therapies might
    make them more useful for more patients.


    Gordon Medical doctors, along with
    several other centers around the world
    are now looking at working with
    immunomodulating treatments such as
    Gc-MAF, stem cells, Peptide T and others
    that boost immune system function against
    viruses and cancers.


    Dr. Paul Cheney is one of the pioneers of umbilical
    cord stem cells in the treatment of CFS and XMRV.

    Based on 18 - 24 months of his experience with just
    over 30 patients, it is clear that stem cells produce
    dramatic improvements in most people under the age
    of 36, moderate results in the 36 - 60 year age group
    and mild improvements in those over 60 years of
    age.

    Unfortunately, the good results are only temporary,
    lasting approximately 6 - 18 months before patients
    regress partially or completely.

    Doctors at GMA are now investigating a technology
    related to stem cells called Platelet Poor Particle
    Rich Plasma that has proven beneficial to several
    hundred patients, some with conditions related to
    CFS, and will hopefully will have longer lasting
    effects than umbilical cord stem cells.


    Another promising immune therapy
    is Gc-MAF (Gc protein-Macrophage
    Activating Factor).

    Gc-MAF activates macrophages, which
    are immune system cells that are
    important in eliminating infection and
    cancer.

    Unfortunately, many cancers and viruses cause the
    secretion of an enzyme called nagalase that digests
    naturally occurring MAF in our bodies.

    Gc-MAF has a similar effect to that of our naturally
    occurring MAF, but Gc-MAF is not degraded by
    nagalase.

    Administration of Gc-MAF via intra-muscular injection
    results in the reactivation of previously suppressed
    macrophages.

    Gc-MAF was first used by Dr. Yamamoto in the
    treatment of HIV and cancer. Recently,
    approximately 80 XMRV positive CFS patients in
    Belgium and the U.S. have received Gc-MAF with very
    promising initial results.

    Patients who are considering this therapy can be
    tested for nagalase levels as well as vitamin D
    receptor mutations, which may influence the outcome
    of Gc-MAF treatment.


    Dr. Mikovits warns that it may be important
    to use an anti-viral strategy in addition to
    immunologic treatments that could
    potentially activate a reservoir in the body
    to express more virus. In addition to ARV
    pharmaceuticals, agents such as artesunate,
    nexavir and others have antiviral and anti-
    inflammatory properties that retard the
    growth of viruses.


    Other factors that studies show may inhibit XMRV
    replication are restoring healthy glutathione levels,
    reducing oxidative stress, reducing inflammation, and
    normalizing methylation.

    Few people realize that our body can naturally
    silence viral infections, including retroviruses such as
    HIV and XMRV, through methylating viral DNA.

    Conversely, if viral DNA is not properly methylated,
    viruses will continue to reproduce and grow in our
    bodies.

    We know that almost everyone with
    CFS has a methylation cycle abnormality
    that can be improved by taking methylation
    enhancing nutritional supplements.

    The study that proved this concept was co-written by
    GMA's very own Neil Nathan, MD. Most people with
    CFS have mild to moderate improvement in
    symptoms when on methylating factors.

    Some very sensitive patients find that starting
    methylation supplements can exacerbate symptoms,
    so as with all treatments, it is important to do these
    in close consultation with your physician.


    Viruses replicate more quickly in environments of
    oxidative stress and inflammation. They also grow
    more easily in low-glutathione environments.

    As an adaptive mechanism viruses actually cause
    oxidative stress, inflammation, and low glutathione
    levels in our bodies that favors their survival.

    By replenishing glutathione levels and reducing
    oxidative stress and inflammation, we may inhibit
    viral growth.

    Many natural compounds have
    anti-inflammatory properties. One
    group of compounds that has proven
    to inhibit both the herpes viruses and
    the NF-kB inflammatory pathway is
    artesunate and related artemisinin
    derivatives.


    Dr. Mikovits and the doctors at Gordon Medical
    believe it will be important to diagnose and treat
    co-infections in patients infected with XMRV, just as
    it is with HIV.

    In the Gordon Medical cohort so far approximately
    half of the patients who are positive for XMRV also
    have Lyme disease. Many also have EBV, HHV-6 and
    CMV, and other infections.

    Some patients who are diagnosed with *CFS*
    respond partially or completely after treating the
    Lyme disease.

    Other patients experience benefits by taking valtrex,
    valcyte or other antiviral medications active against
    herpes-viruses. Though valtrex and valcyte do not
    usually cure CFS, they can help people feel better by
    reducing the immune system load imparted by viral
    co-infections.


    Studies have shown that hormones
    such as cortisol, testosterone and
    estrogen can promote XMRV replication.

    Each of these hormones performs critical functions in
    our body, so some amount is needed, but in excess,
    or out of balance, they may be harmful.

    Cortisol is produced in response to stress, and
    most people with CFS are familiar with how
    stress impacts their symptoms.

    Estrogen, progesterone, testosterone
    and DHEA are often low or out-of-balance
    in CFS. Some patients feel better on
    low-level supplementation of these
    hormones, but some worsen. It is
    important to pay close attention how
    one's body responds to hormonal shifts
    in order to stay in balance.


    The good news is that with every passing year, our
    understanding of CFS is getting better and better.
    Though CFS is still a challenging illness to treat,
    recently discovered treatments have resulted in
    marked improvements in a growing percentage of
    patients with CFS, which represents a significant
    advance compared to years past.

    It is important to remember
    that each of the therapies
    mentioned in this newsletter
    are experimental.

    There are no published
    clinical trials yet, only informal
    observations made by groups
    of astute doctors and patients.


    The practitioners and staff at GMA thank you for your
    time and interest.We will continue to collaborate
    with the Whittemore-Peterson Institute and share
    the latest advances in CFS and XMRV research.

    We would also like to extend our appreciation and
    gratitude to the courageous patients dealing with
    CFS, XMRV, chronic Lyme disease and related
    illnesses who have maintained hope, raised
    awareness and pushed us forward.

    Dr. AzRa MaEl, MD


    If you have questions about XMRV, the lecture, or
    our studies, please contact:

    Susan Friedl
    Research Coordinator
    Gordon Medical Associates
    susan@gordonmedical.com
    707.396.5835
  2. Enid

    Enid Senior Member

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    Many thanks richvank - it is good to read about the real "thing" research, where it's at etc. And how your researchers are unlocking ME/CFS.

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