Xmrv and MLV Serology test available cheaper

Discussion in 'Fibromyalgia Main Forum' started by hensue, Aug 25, 2010.

  1. hensue

    hensue New Member

    The licensed serology test will detect antibodies to Human Gamma
    Retroviruses that include XMRV and other human MLV-related viruses.

    The cost is $249.

    Those who previously tested negative by virus culture will receive a
    letter in a few weeks explaining our retest program at no extra cost to
    the patient.

    If enough of us come up positive as I and some others have. Scientist cannot ignore us!

    this cost is still not covered by insurance yet I dont think.

    I would be suprised if a lot of fibromyalgia patients did not come back positive.

    Where is our Phoenix rising for fibromyalgia???
  2. TigerLilea

    TigerLilea Active Member

    Hi Hensue - I think it is too soon to get excited about XMRV. We still don't know yet whether XMRV will be a big player or not. It could just be another symptom to add to our already long list of symptoms. Or possibly it will just be a subset of CFS patients who test positive. This might turn out to be just another virus that some of us get along with all the other viruses.
  3. hensue

    hensue New Member

    It is totally different and it is getting the ball rolling. Scientist are paying attention.
    Not just another virus
    Take care
  4. mbofov

    mbofov Active Member

    I had looked at the VIP DX lab website a few days ago and saw the cost for both tests which is $549, quite steep, but but didn't pick up you could just get the serology test done for $249.

    So do you know if this is correct:

    the serology test will look for antibodies to XMRV and MLV-related viruses, and the PCR culture
    will look for the actual virus itself?

    I do think it's way more than happenstance that 86% of people with CFS tested positive for XMRV or related MLV viruses, compared to 6% of the general population.

  5. bct

    bct Well-Known Member

    Please could you say where from? The only one I've seen is about 750 dollars. I could afford the cheaper one, but 750 is about my monthly budget!

    [This Message was Edited on 08/25/2010]
  6. gapsych

    gapsych New Member

    I am not sure if I have CFS/ME, but I definitely have FM, so would be interested in getting the test at a later date.

    I would not be surprised if a lot of people who tested negative for XMRV, might test positive, with a more inclusive blood test. However, there still may be visuses out there that have yet to be identified.

    Information is still being gathered and analyzed. At this point we don't know if the RVs found by the FDA/NIH will be a key player or how they even work in CFS, and it takes a lot of time to get to that point.

    So I think a little time will have to pass and when science has a better handle on what is going on, perhaps there will be a more accurate test available.

    I am not sure of what benefit would be by getting the test now. Since we don't know how these viruses relate to CFS, it would not give us a treatment plan.

    I am on disability, so even the reduced price is not doable. I have to get the best bang for my buck.

    Hopefully when we know more about these issues, the insurance companies will cover the test.

    gap[This Message was Edited on 08/25/2010]
  7. quanked

    quanked Member

    I got this off of VIP lab's site last night. Do you know what the PCR/culture test is?

    • The price of the PCR/culture test is $450.
    • The price of the serology test is $249.
    • The discounted price for both tests at the same time is $549.

    VIP Dx
    5625 Fox Avenue, Suite 369
    Reno, NV 89506
    Phone: (775) 351-1890
    Fax: (775) 682-8517
    E-mail: info@vipdx.com
  8. hensue

    hensue New Member

    WPI-Licensed Test for XMRV & Variants Now Available
    August 23, 2010

    VIP Dx (www.vipdx.com) is pleased to announce the availability, beginning Monday, August 23, 2010, of the WPI licensed serology test to detect antibodies to Human Gamma Retroviruses that include XMRV and its variants human MLV-related viruses.

    Please contact customer service for more information at (775) 351-1890.

    Source: VIP Dx news release, Aug 23, 2010


    NOTE: The test kit may be ordered online as explained at www.vipdx.com/order. Submission of a blood sample for the tests themselves (PCR/culture test and/or serology test) incur a further charge and require a requisition signed by the patient's physician that provides a diagnosis code so that VIP Dx "may submit a proper statement of services and fees" that can be submitted to the patient's insurance company.

    As we understand it, the serology (antibody) test may not produce a positive result if the body is not currently producing antibodies, while the PCR test would culture/grow the virus if it is present. Some say this is the current 'gold standard' test for XMRV.

    WPI's net proceeds from licensing of the tests to VIP Dx (formerly RedLabs USA) will be donated to support ongoing research at the non-profit Whittemore Peterson Institute for Neuro Immune Disease.

  9. simonedb

    simonedb Member

    well I am very excited about the viral findings and wnt to find out if I have a virus. I will be disappointed to be honest if I don't, strange as that is, just because I want a neat answer, but like you said then its just something else and you have to figure that out. We already came up with some explanations for my issues (docs etc) but I have not been fully satisfied that cervical stenosis and mcs is the whole thing, along with the terms "cfs" and "fm" I want to know the mechanism that causes it.

    I can see though how once it sinks in that some of us have a retrovirus that there will be concerns about aids, the people in town I have told about it that arent close friends don't seem that interested and perhaps it could freak people out and be afraid of contagion, so maybe people on the boards are afraid of the stigma there could be witha virus attached. Not knowing what it is can oddly be convenient to keep bitching but fall back on the oh well, what can ya do, dont know what it is. At phoenix rising though most people seem super interested in xmrv etc and its most of what you see on the boards.
  10. TigerLilea

    TigerLilea Active Member

    I have no idea whether I will test positive or negative for XMRV. That isn't the point right now. I'm just sitting on the side-lines at present, watching what is going on. I won't get excited about XMRV unless it is proven to cause CFS. Even then, my feeling is that only a sub-group of CFSers will have it. Not all prostate cancer patients tested positive for XMRV, however, that didn't mean then that those who tested negative didn't have cancer. Their cancer was still real - not a wrong diagnoses.

    No one knows at this time how important XMRV will be to CFS. Will it be the smoking gun that explains why we are sick, or, will it just be another symptom that we can add to the list of what is wrong with us? No one can answer that question right now because no one knows for sure. Only time will tell and we have to be patient. Or, at least, I'm going to be patient :)

  11. cfs since 1998

    cfs since 1998 New Member

    ME/CFS is an infectious disease characterized by immune dysregulation and neurological symptoms and a retrovirus is the most logical cause, because that's what retroviruses do, they cause immune dysregulation and neurological disease, and cancer.

    No, one can't make a prediction of causation based on correlation alone. But you can weigh all the evidence--evidence that has been building for 25 plus years--it is all consistent with a retrovirus causation hypothesis. The correlation with MLV-related virus is also tight enough that causation is suggested. Patients shouldn't have to wait another 5 to 15 years to act on this information just because it is not proven to the satisfaction of certain people.
    [This Message was Edited on 08/29/2010]
  12. gapsych

    gapsych New Member

    What you are describing is known as "prior plausibility" which means something is plausible if it is conceptually supported by prior knowledge.

    However, plausibility is not sufficient to prove a theory.

    So while it might be plausible that a virus may cause CFS in general, this does not mean an MLV virus is causing CFS/ME. It could be a regular virus, something that "piggybacks" with an MLV virus or it could be something else completely like a susceptible immune system.

    Yes, it would be great to not have to wait another 5 to 15 years. But we can't make a leap in judgement just because something may be plausible.

    It's not about negativity or "satisfaction of certain people" but has everything to do with being proven to the satisfaction of science.

    We have several studies with differing results and these studies need to be evaluated throughly.

    Science will eventually give us better knowledge of the relationship of CFS and the MLVs, but it is a painstakingly slow process. We want precision when it comes to studying the MLVs.

    We're not there yet.


  13. gapsych

    gapsych New Member

    You are assuming that members of PH are not excited about the NIH/FDA studies. I find it rather presumptuous to say this.

    It's just that some of us are waiting to see what science will show. That's not being negative.

    Many of us are watching all this with anticipation, following it closely, but with caution. That could be described as a form "excitment".

    Sometimes a board may appear as having a consensus on the surface but what is really happening behind the scenes is very different. If a board bans members because there is little tolerance for anyone who is perceived as not "towing the line", then what looks like consensus is in reality censorship.

    That's not to say there is the possibility that there is true consensus.

    Do boards have that right to pick and choose what is acceptable? Absolutely, it's their board.

    But to come here and imply that people are not excited, is rude as well as disrespectful to PH and its members.

    [This Message was Edited on 08/29/2010]
  14. gapsych

    gapsych New Member

    I will be glad to set this straight for you.

    I simply do not know if I have CFS or not. The doctor's don't know. Now I do have fibromyalgia, chronic pain, PEM, and exhaustion. So why does that discount my opinion that I don't know enough about the disease? Even if I didn't that still does not say I have an uninformed opinion.

    Hypothetically, it could also be said that if someone is thinking with their emotions, not that that is necessarily bad, that you don't know enough science to have an informed opinion. But, I am addressing the issues, not you.

    What you say about me is simply not true.

    [This Message was Edited on 08/29/2010]
  15. u&iraok

    u&iraok New Member

    Not attacking you, just discussing. :)

    What does that really mean, 'the most logical cause'? Vaccines also cause immune dysregulation and neural damage. For me, personally, I believe vaccines were one cause of my CFS since I reacted so badly to a series of flu shots. I also have a heavy metals problem which caused me neurological problems, either from the vaccines or a mercury filling I had taken out or from even before that, who knows. 6 years ago, right before I got CFS I had a huge mainly mercury detox and I just found out that I still have a metals problem which I'm now working on. Dr. Russell Blaylock shows how vaccines and the aluminum and mercury used as preservatives in vaccines can cause a one-two punch that the body cannot recover from. So vaccines and mercury is the most logical cause for me, but that doesn't mean I'm sure they're the cause.

    But vaccines as the cause of this and other problems is not popular.

    And remember when Eptstein Barr was excitedly thought to be the cause of CFS? Then HHV-6, then that most recent one, I can't remember the name. It's a hope that if a virus is found then there can maybe be drugs to cure it. But CFS might have many causes and viruses may just be opportunistic because of our diregulated immune system. And if 86% of people with CFS have XMRV what about the other 14%? There may be subgroups within CFS.
    [This Message was Edited on 08/30/2010]
  16. gapsych

    gapsych New Member

    What forum are you talking about? I guess I am confused as your original post to me has been deleted.

    [This Message was Edited on 09/06/2010]
  17. gapsych

    gapsych New Member

    Please elaborate. "lurkers"? When have I gossiped? Honestly, I have no idea what you are talking about.

    I am not a member of Cort's forum. I do go to another site that is science based but not just about CFS. It is not the one you have posted.

    When I have the time, I will certainly look at the other forum as you say it is scientific. Sounds appealing.

    I have no plans on leaving this board.



    [This Message was Edited on 09/06/2010]
  18. malegender

    malegender New Member

    i have never understood how to get in touch w anyone please help. Is there a way to get in touch with you?
    What happened to Dr Chia and enteroviruses? that is the last time i checked this site and gave up on finding a dr who would help me.
    How are you able to keep seeing drs? HOw do you find the energy?
    I will check back when i can to see your response.
    How do i check my favorite posts on this site? i ve checcked them but don't see a way to access them. I would think it would be somewhere under community but i dont see a way to access my favorite posts or any of my tags
    Ah found it under my account and then under profile.

    [This Message was Edited on 09/21/2010]
  19. hensue

    hensue New Member

    When you get on that page sign in to the forum. A bunch of smart people to let you know anything about Dr Chia, enteroviruses.

    Once you sign in and make your profile. You can email anyone or just post your topic.

    Please check it so many on that board what one person doesnt know another will find out.

    Let you know about doctors in your area also.

    Take care and let us know how your doing.

  20. skeptik2

    skeptik2 Member

    The Whittemore Peterson Institute has licensed VIPDx to do this
    testing, right in the Univ. of Nevada's WPI laboratory area.

    Go to wpinstitute.org, you'll find it all there!

    BUT....before you do, ask yourself...if I'm positive, what will I DO with
    that information? We don not have drs. educated about XMRV and MLVS
    yet, and you will not be able to get care unless you have a dr. who is
    willing to try you on (very expensive) retrovirals and see how you do.

    I believe the NIH and WPI are working on a (patentable, no doubt) simple
    blood test they can market all over the world, FDA approved, Insurance
    Pays for it, etc., that will be ready within a year. I doubt it could all happen
    much faster than that, but maybe....

    Think carefully before you spend your money...


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