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xmrv+ starting AV's tenofovir and raltegravir

Discussion in 'XMRV Testing, Treatment and Transmission' started by pinkytuscadaro, Jan 27, 2011.

  1. dannybex

    dannybex Senior Member

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    Riboflavin -- vitamin B2 -- might be worth a try as well -- it is depleted by antiretrovirals, and is very important to mucosal (gut) integrity.
  2. pete

    pete pete

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    50 miles from london
    P.S. I just remembered Pinky , Dr. Deckoff Jones advised low doses building up in quarter tab intervals to minimise side effects. Can you come down a bit on dose and build up slow ? Best Wishes , P.
  3. pete

    pete pete

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    50 miles from london
    Sorry hope both come out
  4. pinkytuscadaro

    pinkytuscadaro

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    Hello everybody and thank you for your suggestions.
    I started LDN and the RV's on the same day at the full dose so I am sorry if that confuses things. Since I am in it to this degree I better just stay the course.
    So far I have not experienced anything from this treatment that has been any worse than from the numerous detox programs that I have been on through the years.
    My only concern is, will this treatment help?
    Is xmrv the culprit?
    I guess only time will tell.
    I did not sleep well last night but am functioning today and feel pretty clear headed; my stomach feels better too.
    Only time will tell.
    Pinky
  5. pinkytuscadaro

    pinkytuscadaro

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    I just read that Dr. Mikovitis is the one who said that RV's seem to work for 6 months for those with xmrv and then all symptoms begin to return?
    Here is the relevant part to the post I am referring to on RV's:

    "along with Brewer’s patients and a few others. She has noticed a common theme of patients feeling better around 6 months, followed by a return of all or most symptoms. It sounds very similar to what happens to many on antivirals. I appreciated that"

    Why would something work for 6 months and then stop? I had not heard that before starting the RV's and if that turns out to be fact would definately stop the RV's since what good is a little help for 6 months?
    That is not very comforting.
    If anyone else is on RV's or not and has more information I would appreciate your input.

    I would think that treating xmrv would allow the immune system to clear up any co-infections and therefore one would eventually feel better?

    Pinky
  6. Berthe

    Berthe Senior Member

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    Dear Pinky,

    I would ask dr. Deckoff if I were you. I think she can give a proper answer to your question. I also heard about this before, but I thought it reffered to seeing the most improvement in the first six months and after six months the improvements wouldn't be that spectacular anymore. Correct me if I am wrong.

    Love,
    Esther

    http://www.onwilliglichaam.blogspot.com
  7. pinkytuscadaro

    pinkytuscadaro

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    Hello, checking in to let everyone know how things are coming along :)

    I am a little past my 3rd week on RV's and I am doing better: my stomach is still sensitive but nothing like it was the first 2 weeks.
    I have had a harder time falling asleep since starting the RV's and LDN but that too is getting better.
    I have been taking some sleeping aids until I get past this.
    I have not felt a difference in energy yet but do not expect to this soon.

    Thank you Esther for the suggestion, I am going to email Dr. Deckoff today and to see what she thinks?
    If she emails me back I will post her answer.
    Thank you 1977 for the Ginger suggestion, it has helped a lot.
    Wishing everyonge good health and peace.
    Pinky
  8. Berthe

    Berthe Senior Member

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    Dear Pinky,

    Thank you for keeping us posted. I think you are doing very valuable pioneerswork for the rest of us. I'm also willing to follow in your footsteps, but it is very difficult in Belgium to find a physician who is willing to prescribe the antiretrovirals. Because of me being XMRV positive as well, I hope this will change in the near future. Meanwhile I will support you as much as I can.

    Love,
    Esther

    http://www.onwilliglichaam.blogspot.com
  9. pinkytuscadaro

    pinkytuscadaro

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    Thank you Esther how kind of you and I will support you as well.

    My NP forwarded me this article today and I thought it was helpful in regards to xmrv and treatment.
    Pinky

    ----------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




    --

    Julie Anderson ARNP
    4757 36th Ave S
    Seattle, WA 98118

    206-760-9266
    npjulie.com
    fax 206-760-9807
  10. pinkytuscadaro

    pinkytuscadaro

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    Seattle Washington
    Link for free isentress if your income qualifies.
    A single person can make over 50,000 and still qualify and the income level goes up accordingly if you have dependents www.isentress.com/isentress/shared/documents/SUPPORT_enrollment.pdf
    If the link does not work you can googel Isentress support program and fill out enrollment form.
  11. pete

    pete pete

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    50 miles from london
    Thanks for all the info' Pinky . I'm now on the ten and zid . Just MEish and tummy ache so far. Hope you're good , Pete .
  12. undcvr

    undcvr Senior Member

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    NYC
    One note is that alot of B vitamins and cofactors are depleted by AVs. Because the AVs essentially disrupt dna/rna replication, some of them are sloppy and will disrupt your own body's biological processes too.

    Something to consider to 'rescue' this cycle is active folates, namely formyl and methyl folates. They will allow biological processes to go through. Taking high amounts of daily B vitamins is not a bad idea either.
  13. pinkytuscadaro

    pinkytuscadaro

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    Reporting in: I just looked at my RV starting date January 28 2011.
    I have been very weak. I had my blood drawn last week and have not heard anything yet.
    The RV's initially caused really bad stomach upset and extreme eye sensitivity.
    Both of these issues are much better now 6 or so weeks into treatment.
    I do not feel any benefit since starting the RV's but am still hoping for at least a 20% improvement.
    The more I look into the xmrv virus the more I believe that it came from vaccinations.
    My mother had CFS but we did not know what it was back then. She was much better then me but still was pretty much home bound except for grocery shopping and necessities. I also have one brother that has CFS and one who doesn't. My father was healthy, thank Goodness.
    My mother had spinal meningitis as a child; I wonder if that plays into this?
    I haven't posted or answered any private messages for awhile since I have been so exhausted and when I started a post or tried returning a privated messaged what I wrote was not very ledgible and so I deleted.
    I wanted to updated everyone so please forgive my inability to write clearly. This has been one of my continuous extreme issues with this disease cognitive dysfunction.
    That is one of the reasons that I have been so happily surprised with how intelligent some of the people who post on PR are, we need smart people to bring CFS to the forefront.
    I get very aggravated when I see all of the celebrities working for AIDs and nothing for CFS? I am glad people with AIDS have received so much help but what about people with CFS? Where are our ADVOCATES?
    I think that there needs to be a PRIMETIME report on people with bed bound CFS, letting people know how we linger in bed and watch our lives pass by.
    Too many people think CFS is just about being tired; we need to have a show on the extreme cases: the people who have lived with this disease for 20 pluss years.
    Wishing you all good health.
    Pinky
  14. pinkytuscadaro

    pinkytuscadaro

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    I maybe should be more discriptive of how I have been feeling on the
    RV's....
    I feel like I have a lingering flu all of the time. I had a migraine last week the kind that leave you on the floor vomiting until you have nothing left but gull and your head finally hurts so bad that you can no longer lift it to the toilet so you just lie there and throw up on the floor or on yourself and finally when you get diarrhea you just still lie there knowing that you can clean the mess when this passes because to move your head would be too painful; these migraines come and go. Then there is the profuse sweating that comes and goes all through the day and the night. The kind that makes you so wet you can wring water from your clothing or sheets. Also there is the brain fog that is so bad that I do not make sense at times and I am too tired and weak to think straight. I do not have the energy to read much nor do I understand much of what I read anymore. The fatigue is so bad that I just lie in bed. I do not cook for myself do not shop do not visit with friends, except on the phone. My energy is so low that I must measure how I use it; leaving the house leaves me weak for days.

    My body hurts : aches, and I have weird pains that shoot through my head like a lightening bolt that come and go. I am short of breathe a lot. I can not tolerate stress or even talking about stressful events.
    My writing is not legible. I am frusrated easily.
    I could go on and on......
    I would write more about how the RV's are effecting me but then again all of this is not much different than before I was on the RV's.
    Having said all of this I am still hopeful that the RV's will work and will give them 6 months.
    Just another day with severe CFS.
    I will post again in a month unless there are any significant changes before then.
    Pinky
  15. pinkytuscadaro

    pinkytuscadaro

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    Well I guess that this will be my last post since I have decided to quit the RV's
    With all of the continued news coming out about contamination and with the results of others on RV's not doing so well I just do not think that it is worth the risk of taking them at this time.

    Update: I will have been off of the RV's for 2 days as of this evening.
    I did not state when I first made this post that I finally quit mostly because I was getting sicker and sicker and the night that I took my last dose my liver ached badly; I also had pain in my bones. spine and my knuckles felt very swollen (could not move fingers easily) but they were not swollen. It felt like arthritis must feel.
    I do not know if the RV's were killing xmrv and that was a herxheimer reaction or if the RV's were causing toxicity in my body.
    Previously I have been unable to take AV's for more than 3 months since I either get extremely weak and or I become allergic.

    Also when I was taking the RV's I slowly became over all much weaker and less coherent than before I started them.
    I do not think I could have taken them much longer.
    It was hard for me to tell how much worse off I was as I wanted so much to feel better on them and my ability to anaylze things was even worse than usual on them.
    My brother told me that I had really gone down hill and wanted me to get off of them as well.

    Pinky

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