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Important to test for XMRV?

Discussion in 'XMRV Testing, Treatment and Transmission' started by I imagine, Aug 20, 2011.

  1. I imagine

    I imagine

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    Sedona AZ
    I am having some further tests done. I tested positive for Epstein Barr. Is it important to be tested for XMRV? Would treatment be the same regardless of whether or not I test positive for XMRV? I'm trying to choose the most important tests since money is an issue. Thanks for any help with the decision.
  2. WillowJ

    WillowJ Senior Member

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    WA, USA
    Hi,

    in my opinion, XMRV testing is still experimental at this point. We don't yet know what XMRV is and means. We also don't know what is the best test for it. I personally will wait until the science is better settled, before spending money on XMRV testing.

    Regarding treatment, there are antiretroviral drugs which do have action against XMRV in test tubes, but they have not been trialed in live conditions under experimental design. Since XMRV does not replicate as often as HIV, we don't know whether medicines designed for HIV would work as well in real life (even if we had decided that XMRV was responsible for or contributed to our disease, which we don't at this point know). You would essentially be an experiment of one. I would not say this shouldn't be available, because patients who are very ill and have already tried everything else should have the right to try it. But I personally will wait for the science.

    I would recommend testing for HHV-6, HHV-7, Mycoplasma, NK cell function, ANA. You might want to look at the Canadian and International Consensus Criteria to find more types of tests that might be useful.

    willowj
  3. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Albuquerque
    Hi,

    Yes the test for XMRV might or might not detect it at this point. I tested and got a positive, but we don't know yet the role of XMRV. If it does turn out to be significant, yes, your treatment would likely be different, but what it would be is as yet unknown.

    You might want to wait until more is known about XMRV before investing a lot of money in a treatment program. There are lots of things that need to be fixed whether or not XMRV turns out to be an important player. Most all of us have methylation problems and toxicity problems. (they go together) Methylation protocols are not expensive. Detox programs can be and can also be pretty tricky to handle...and need some expert guidance as we often can't handle the detox programs that other types of patients do well with.

    In the next few months more research is likely to be published and you may have a better idea what to do.

    Best wishes,
    Sushi
  4. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Being positive to a retrovirus lowers our immunity and then we are prone to other infections reactivating. SO being positive to ebv, u then have to find out if its active/reactivating by testing for high viral titres or lymphocyte subset testing and if cd8 is elevated then ebv is potentially reactivating, also need to test for other herpes viruses ie cmv, hhv6 which are common in cfs. As already mentioned, if u can get tested for nk function and it is low then potentially the herpes viruses maybe reactivating, i posted a thread today showing a how herpes viruses reactivate when nk function is low. dont get a nk function test mixed up with nk cell count which can be normal but function low. Treating these opportunistic infections can definately help you feel better.
    WillowJ likes this.
  5. taniaaust1

    taniaaust1 Senior Member

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    Sth Australia
    I suggest not getting tested for XMRV currently as its all too contraversial and no proven treatments for that either as yet, they dont even know what it does.

    I'd think it best to get tested for the many other things you can with this illness to which more is known how to treat any abnormal findings.

    You also should base your tests probably on what symptoms you get eg if you have a lot of bowel or stomach issues you may want to get tested things like fructose intollerance. bowel flora etc etc.

    If you have symptoms which are virally.. you may want to focus on more indepth immune function testing.
    If you seem probably have POTS.. get tilt table tested
    etc.
    ......

    I found hair analyses testing good in my own case as it helped pick up a deficiency which was never tested by other tests.

    As another here said.. in the canadian consesus document.. there is many suggestions of abnormalities which can be looked for in ME/CFS.
    WillowJ likes this.
  6. Daffodil

    Daffodil Senior Member

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    i think it all depends on how sick you are. if you are VERY desperate, i would get the xmrv test and maybe look into antiretrovirals...but ideally, if i felt i could wait, i would hold off for now on xmrv testing...at least for several more months.
  7. I imagine

    I imagine

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    Sedona AZ
    Thanks everyone. This has all been very helpful. I think I'll put the money towards some other tests for now.
  8. Vanguard

    Vanguard

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    I'm in the same boat as you and am considering getting tested for XMRV. I understand that testing for it isn't completely useful yet as it hasn't been fully linked to CFS yet but I still want to know if I have a retrovirus. Also, if everyone who has CFS goes ahead and tests for it and many of us are positive then that should account for something. We could fill a database with everyone's results and have our own study results.
  9. PokerPlayer

    PokerPlayer Guest

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    Seattle, Washington
    Well, for practical reasons to do with money I would say that the xmrv test can't really help you out much with current treatment most likely.

    However, if money isn't an issue why the heck would anyone not want to get tested???

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