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XMRV treatment. Q&A with the author of the study about treatment

Discussion in 'XMRV Testing, Treatment and Transmission' started by kansas_K, Oct 17, 2009.

  1. kansas_K

    kansas_K Guest

    Here's a Q&A from the author of the study about treatment and XMRV:

    http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/86936?#000000

    Those who have a Lyme diagnosis and those who have a ME/CFS diagnosis are in the same boat.

    The symptoms are the same, the way it breaks out is the same (some immune suppression - that being a vaccine, giving birth, mononucleosis, severe stress etc.), and both the diagnoses get equally little attention in contrast to what they deserve.

    So I think the groups should stand more together. And collaborate more.

    Anyway, there's a thread above, ideas about how this is/going to be treated is appreciated.
  2. Cort

    Cort Phoenix Rising Founder

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    Thanks for that tidbit from Dr. Mikovits - very enlightening.
  3. rebecca1995

    rebecca1995 Apple, anyone?

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    fuller Q & A

    FYI, here's a link to a fuller version of that Q & A with Mikovits. (I'm still not sure whom she was talking to! The translation is a bit rough.)

    http://merutt.wordpress.com/tag/chronic-fatigue-syndrome/

    I like this:

    Within the year, she says!
  4. rebecca1995

    rebecca1995 Apple, anyone?

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  5. cfs since 1998

    cfs since 1998 *****

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    Thanks for posting this, rebecca1995. I don't think many of us have seen this full Q&A before. It is amazing that Dr. Mikovits says they are close (within a year) to having enough evidence to say XMRV causes CFS the same way HIV causes AIDS. Wow.
  6. Rrrr

    Rrrr Senior Member

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    XMRV treatment

    is this the tread for treatment suggestions for XMRV? if so, why is this tread not more active?

    i know there is a lot written on cort's page about treatment (found here:
    http://aboutmecfs.org/Trt/XMRVTreatment.aspx)

    i admit i'm confused by what cort writes, as i'm not sure if he is saying that the drugs he lists ARE or ARE NOT being considered to treat XMRV: Non-nucleoside Reverse Transcriptase Inhibitors, Integrase Inhibitors, Proteasome Inhibitors.

    can someone enlighten me? i'm asking mostly because i have not seen proteasome inhibitors mentioned elsewhere as a possible XMRV treatment.

    anyway, let's see if we can get this tread more active with thoughts on XMRV treatments that are *not* alternative/natural treatments. in other words, are meds/drugs.

    with that in mind, i got this in an email from judy mikovits:

    "It is likely that treatments that modulate cytokines ... will be valuable in treating this disease. The XMRV virus can be turned on by inflammatory cytokines such as IL6, IL1, TNF so turning the inflammation down can quiet the virus. I suggest non steroidal anti-inflammatories such as Aleve or Advil. and things that dampen the immune response . I can recommend also some natural products that can control Cortisol.

    Best,
    Judy
    ____

    is she really saying that simple old walgreen-bought ALEVE AND ADVIL will help dampen down the XMRV retrovirus?????

    rrrr
  7. Rrrr

    Rrrr Senior Member

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    More from judy mikovits on treatment options (meds)

    This below quote was taken from
    http://bexar.tx.networkofcare.org/aging/news/detail.cfm?articleID=25508

    and gives possible treatment strategies for the XMRV retrovirus, as
    stated by Dr Mikovitz, the top researcher who found the XMRV retrovirus.

    "XMRV is a retrovirus, which puts it in the same viral class as HIV.
    Mikovits said that because, in general, XMRV replicates less actively
    than HIV, highly active antiretroviral treatment probably is not an
    optimal treatment for XMRV. Its lower replication rate also may be the
    reason that previous attempts to link CFS to an underlying retroviral
    infection have been unsuccessful. Two anti-HIV strategies that do have
    promise for XMRV are integrase inhibitors and non-nucleoside reverse
    transcriptase inhibitors. Due to the details of how XMRV is activated,
    nonsteroidal anti-inflammatory drugs and Velcade (bortezomib,
    Millennium) also may be candidates for treatment."
  8. Rrrr

    Rrrr Senior Member

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    nancy klimas on meds for xmrv

    from
    http://abcnews.go.com/Health/PainMa...d-biomarker-therapies/Story?id=8950867&page=1


    Now, drug companies are taking an interest in her [NANCY KLIMAS] work treating eight patients with reverse transcriptase inhibitors, antiretroviral drugs similar to those used today in HIV/AIDS patients.

    "They went from very ill to much, much improved," said Klimas, who now directs the Gulf War Illness and Chronic Fatigue Syndrome Clinic at the Miami Veterans Affairs Medical Center.

    One company that hopes to find new therapies with Klimas is Ohio-based Neo Probe, which explores activated cellular therapy technology to treat cancer, as well as viral and autoimmune diseases.
  9. Kati

    Kati Patient in training

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    Velcade is a good drug- used in cancer treatment. I think this is all good news- HIV and cancer research have made a path for CFS /XMRV treatment.

    I am a bit worried about the statement that if you don't have XMRV, you don't have CFS- so for those left behind, now what? ...
  10. Aftermath

    Aftermath Guest

    Profiteers: Bring Them On!

    The concept of money hungry drug companies licking their chops at this illness is something that I welcome tremendously.

    AIDS didn't go from an instant death sentence to a lifelong inconvenience overnight primarily because of non-profits or government research. No, people are living fairly normal lives due to drugs developed by private companies seeking a profit.

    People can talk all they want about profit in healthcare being bad, the acceptance of homeopathic treatments by other nations, etc. The bottom line is that there is one reason why people with AIDS are now living fairly long and normal lives--it is drugs developed by for-profit US companies.

    I'm going to make a full post on this topic as a separate thread in the next day or so. For right now, let it suffice to say that if my two options are the status quo of the last 25 years or getting well but having to take a drug that someone makes a boatload of money off of for the rest of my life, I think that I know what option I am choosing.

    So, to big pharma, I say "welcome." It surely took you long enough to get here!
  11. anne

    anne Guest

    A-freakin'-men!
  12. _Kim_

    _Kim_ Guest

    Woa Judy..

    Okay, that one got me - I was handling the news that I have CFS pretty well, I could accept that it might be caused by a retrovirus, but to hear that I might, by definition, be classified as an AIDS patient has me undone.

    And if I am technically an AIDS patient, are those Crimson Crescents that I have on my pharyngeal arches Kaposi's Sarcoma?
  13. Frickly

    Frickly Senior Member

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    Aftermath

    I agree....It might not be pretty but it is reality. Why does fibromyalgia get so much attention? Because there is a drug that is making alot of money for alot of people. This is exactly what we have needed for years. This is what will get things moving.
  14. Andrew

    Andrew Senior Member

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    In the CFSAC meeting I think the retrovirus expert mentioned some compound that already has some testing for XMRV, but not for the new XMRV in CFS. I can't remember more than this.
  15. Frickly

    Frickly Senior Member

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    Complex vs. Simple Retrovirus

    Anyone is welcome to correct me if I am wrong. HIV is a complex retrovirus which is why it is so difficult to treat. Because XMRV is a simple retrovirus it replicates slowly so we will, hopefully, have more treatment options as well as a possibility for a vaccine?

    Still.....it is scary. However, I try to think about how I would feel if I got a positive result vs. a negative. I am hoping for positive because then I will be validated and there will be possibilities for actual treatment.:)
  16. shrewsbury

    shrewsbury member

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    trustworthy source?

    Hi Kim

    Please do yourself back up (bad humour - hope it worked)

    THe "quote", while frightening, didn't sound right to me

    I tried to track down the supposed interview. THis is what I found
    http://www.tiredofme.com/2009/10/sprsmal-om-xmrv-questions-about-xmrv.html
    A norwegian's blog.

    I have my doubts about reliability.
    • It's dated Oct 9;
    • there no description of contacting Micovits for an interview

    • the supposed Mikovits refers to xmrv as a virus - can't imagine her being that sloppy.
    • I can't find reference to it anywhere trustworthy on google

    I think it's a fraud. - a snoopes (sp?) case - an urban legend.

    That's my story and I'm sticking to it unless Mikovits herself makes me change my mind.

    if:)
  17. _Kim_

    _Kim_ Guest

    good detective work!

    Thanks for the back up advice (beepbeepbeep) islandfinn. You've got a good nose for BS.
  18. lebowski

    lebowski

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    levamisole

    i d be glad if anyone can reach an expert opinion about this one


    Anti-HIV effect of immunomodulating agent, levamisole, in vitro
    Authors: A S Bourinbaiar, S Lee-Huang, K Krasinski, W Borkowsky
    Impact factor: 1.42, Cited half life: 4.9, Immediacy index: 0.21

    Journal: Biomedecine [?] Pharmacotherapy
    An anthelminthic agent, levamisole, also known as a potent immunomodulator, has been successfully used for adjuvant therapy of malignancies and chronic infections underlined by immunodeficiency. We have tested the effect of this drug on de novo viral infection by exposing MT-4 T lymphocytes to HIV in the presence of serial ten-fold dilutions of levamisole (range 10(-3)-10(-9) M). The results indicate that 50% reduction in viral infectivity (IC50) of levamisole starts from as low as 10(-7) M, whereas even the highest millimolar dose of the drug has not shown any appreciable cytotoxicity. Although the mechanism of levamisole action remains unknown, our observation in vitro suggests that levamisole, a clinically established immunomodulator, can be potentially effective for treatment of HIV infection.
    Biomedicine & pharmacotherapy = Biomdecine & pharmacothrapie. 01/02/1994; 48(7):327-30.
    ISSN: 0753-3322
  19. Navid

    Navid Senior Member

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    my comment is not intended to minimize or negate your fears: ) i had/have the same ones but:

    my husband and dr. reminded me: for the most part we are not dying from cfid's....yes we are miserable and can barely function, but ppl have been sick for decades and are still ALIVE....untreated HIV/AIDS patients die.

    i am keeping on the positive thought track here....xmrv will be easier to control than hiv (it's a less complex, slower replicating retro-virus). folks who were near death with hiv/aids are now leading active functional lives....soon we will too!!!!! hurrah!!!!

    warmest regards, lisa
  20. Cort

    Cort Phoenix Rising Founder

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    My understanding is that the slow rate of replication will help with a vaccine - because the virus doesn't mutate much - but could hurt with a treatment - because apparently treatments target the virus when its replicating - so there isn't as big of a window there. (?)

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