1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
The Pathway to Prevention (P2P) for ME/CFS: A Dangerous Process
Gabby Klein gives an overview of the P2P process, shedding light on the pitfalls with advice as to what we can do in protest ...
Discuss the article on the Forums.

XMRV Testing-FYI

Discussion in 'XMRV Testing, Treatment and Transmission' started by InvertedTree, Oct 9, 2009.

  1. dannybex

    dannybex Senior Member

    Messages:
    2,170
    Likes:
    515
    Seattle
    Hi Levi...

    I told ya my brain was mush. :(

    Thanks for the clarification,

    d.
  2. Michael

    Michael Guest

    confusion

    Perhaps reporting your sex with the XMRV test results would be important. I see a lot of data here, but it strikes me that we are missing an potentially important factor. Women do not have prostates and so is this data somehow skewed towards men when we speak of the percentages of population testing positive for XMRV. Maybe we are missing something here? For the record I am male and I was positive for latent virus, but negative for active virus. Michael
  3. citybug

    citybug Senior Member

    Messages:
    522
    Likes:
    36
    NY
    My CFS doc said 6 of 7 tests came back negative so far, thinks should wait for antibody test. WPI on facebook says VIP may have antibody test in February. She thought shipping overnight could be problem.
  4. starcycle

    starcycle Guest

    I would agree with that, and I don't think we should even test then *until there is more verification of the Mikovits findings.*

    We are dealing very strongly with *perception* and *ingrained beliefs.* The stronger the *initial* evidence is that XMRV is implicated or even causative for CFS, the better the chances of CFS being accepted by the mainstream medical establishment. In these early stages, the more results that come back negative, the more the "conventional wisdom" says it's "just another false lead, there is no biological basis for CFS, it's all psychosomatic." Then, because that belief has become ingrained, it becomes very hard to overcome even with the weight of evidence on your side. It becomes the accepted "knowledge," and they go by that.

    By contrast, if those hurdles are overcome early by a slew of mostly positive reports and verifications of the original study, then, like a snowball gathering momentum and size, that will tend to become the accepted view. Then, even if there are a bunch of negatives from that point, the tendency would be to question why we are getting the negatives (is the test not as accurate as it could be? etc.) rather than questioning the connection in the first place. So it's much better to wait, imo. Of course everyone is curious, but we've waited and been patient this long. A little more patience could mean the difference between CFS being accepted as a legitimate disease, and being maligned, marginalized, doubted as it is now. I don't think there is anyone is such dire circumstances that they can't afford to wait 6 months!
  5. Eric Johnson from I&I

    Eric Johnson from I&I Senior Member

    Messages:
    337
    Likes:
    0
    I keep asking where the latent/active thing came from. I see no reason why any of these tests should make that distinction at all. I'm 90% sure everyone is talking about a distinction that doesnt exist.

    I'm confused as to why the thing is so hard to pick up using PCR. They used nested PCR in the paper, which should be very sensitive; its theoretical sensitivity should be way, way high. But I'm not expert on PCR sensitivity in "real life", or on what things might reduce it. "In theory, theres no difference between theory and practice -- but in practice, there is."

    Maybe they used PCR in a more stringent way because of fear of false positives. Certain variables affect stringency. In the future, if it becomes clear that no danger of false positives exist, maybe they can lower the stringency and everyone will be PCR+.

    But anyway, if they can get the sensitivity up, the obvious thing to do will be quantitative PCR. This will show how many copies of the virus one has per mL of blood, or whatever. It is quite possible that all healthy XMRV+ people will have low amounts, much lower than all CFSers. If so, low counts could be said to indicate latency, and obviously the low amount of virus, if this were true, would explain why healthy XMRV+ people dont have CFS. But there is no reason to think that {PCR- culture+} indicates fewer copies than {PCR+ culture-} indicates. Why would it? It is not clear that one assay or the other is *significantly* more sensitive. There are other possible variables involved. Despite the low genetic diversity, your XMRV might still "like" the particular cells used in the culture assay better than mine do.

    Another matter is the not-yet-available serology test (antibodies). In theory, yes, {antibodies+ PCR- culture-} should indicate latency. But *only* if we know that the PCR and culture are both working sensitively and reliably. It is not clear that they are. It could be that the tests are unrefined enough at this point that the results are not of such a quality to use in such a deduction.
  6. _Kim_

    _Kim_ Guest

    Thanks for your persistence Eric. I've heard you from the start. A positive culture test doesn't (as far as I understand) indicate latency. I would like to see the Polls re-worded as they are "stickied" up there and very visible to all who come to this forum looking for XMRV information.
  7. starcycle

    starcycle Guest

    I don't know what PCR is, but I don't know if I agree with what the post seems to be saying. Latency could be a very important issue with XMRV, accounting for why the 3-4% of people without CFS test positive. The virus hasn't been activated yet.
  8. Eric Johnson from I&I

    Eric Johnson from I&I Senior Member

    Messages:
    337
    Likes:
    0
    I'm talkin 'bout whether latency can be ascertained in a given sample. Not about whether latency, or different viral loads, can exist. It definitely can.
  9. Eric Johnson from I&I

    Eric Johnson from I&I Senior Member

    Messages:
    337
    Likes:
    0
    I see how I was ambiguous though, in the first paragraph or so. My bad.
  10. starcycle

    starcycle Guest

    What's PCR? I see that mentioned a lot apparently as some sort of testing methodology.
  11. starcycle

    starcycle Guest

    okay, thanks. :)
  12. Eric Johnson from I&I

    Eric Johnson from I&I Senior Member

    Messages:
    337
    Likes:
    0
    PCR blew a gigantic hole in science, as my teacher used to say, in the early 1980s. Basically youve got enzymes that replicate your DNA when your cells divide. So does every cellular organism. PCR uses these enzymes, harvested from bacteria, to replicate DNA in a test tube. Before this was invented, you really couldnt do a darn thing with DNA, or anyway almost nothing. Now you do everything. Its one of history's greatest inventions. This weird, kind of cool dude Kary Mullis invented it, sort of, or at least was the first to figure out how to get 'er done in fine, and then the first to really do it. The thing is, he's actually an idiot.

    Suppose there was reason to suspect the presence of some kind of organism in your bloodstream, a taco for instance. You must have fallen down on top of it and stabbed your shoulder with a shard of the shell, thats the only way this could happen. Thereupon, with your permission, I would use PCR to make billions of copies of a certain fairly short sequence of cow DNA present in your blood. I would mix this product with ethidum bromide which sticks in the DNA and fluoresces under UV light so I can see the stuff. I would run this out on a gel in an electric field, which would show rather precisely whether it is of the expected size. I would look up the sequence that is expected, and use bacterial restriction enzymes that cut DNA in half only a certain sequence, eg AAGTTGAA, that I expect to be present. I would run it out again to see if the cut fragments were the correct size. At this point you would be considered cow-positive, or cow-negative as the case may be, and I would make sure to record in my notebook. But it honestly wouldnt work at all if you simmered the beef thoroughly, which I surely hope you did. The thing is I would probably be almost done running the test before I thought of that, not to mention that I forgot to ask if the taco was beef or chicken. Lamb, wow, are you serious? You must have a damn sight more dough than Ive got.
  13. _Kim_

    _Kim_ Guest

    Sue, thanks for letting us know. I was on Valtrex when I was tested. Previously, other members HAD asked VIP and they said that it didn't matter. I'm with you, Sue: WTF!! no instructions with their test kit, conflicting advice from others who even asked them about it, and not even informing my doctor that this was a necessary part of the protocol.

    Now I'd like to ask those who have tested positive - were any of you on antivirals/antibiotics when you were tested?
  14. gracenote

    gracenote All shall be well . . .

    Messages:
    1,508
    Likes:
    42
    Santa Rosa, CA
    XMRV test on Acyclovir

    I had blood drawn for an XMRV test for a study being done by Panorama Research Institute (PRI) on December 23. I'd been on Acyclovir for one week. When I asked the person coordinating the study about being on Acyclovir, she said she didn't know if it mattered and hadn't been told that people should be off anti-virals by PRI. (PRI seems to be learning as they go their questionnaire was not the best.)

    It will be interesting to compare my results from PRI with the blood test I had done for a study with WPI in September when I wasn't on any anti-virals. There'll be no way to know for sure if the anti-viral is the difference or if the testing itself was different, but it will be interesting to compare the two.

    I'm still waiting for results on both tests. I will post when I know.
  15. hensue

    hensue Senior Member

    Messages:
    269
    Likes:
    1
    I was on no antivirals or antibiotics

    I wondered about all that I even stopped all my supplements. About 2 weeks before I tested. Mine was positive and I was taking wellbutrin sr and klonopin for sleep.

    I take quite a bit of vitamins and other supplements. Just to be on the safe side I quit taking them.

    Everything screws up the level of meds in my body. We are so sensitive to meds.

    In fact it could have been close to 3 weeks.
  16. SickOfSickness

    SickOfSickness Senior Member

    Messages:
    1,823
    Likes:
    914
    US
    Take LDN?

    I was planning to start on my LDN really soon, but if I take LDN will it make my XMRV maybe not show up? I mean if it works and makes my immune system stronger and it kills some of the XMRV, then I might not test positive for XMRV?

    I see most people here are deciding to wait a little longer for the better XMRV tests. I too really want my XMRV to come back as positive because I need proof so that my family can stop thinking I am a whiny loser which is stressful.

    Anyway should I not take the LDN yet? I am desperate to get started on some relief and I have sensitivities so it will take me months to ramp up the LDN.

    If anyone knows, please send me a PM with a link, or copy and paste info.

    I have not read all the XMRV testing posts yet. I apologize for not doing my own reading right now, but I am running low on energy and I was just reading some posts and they make me cry, hearing about the others whose lives have been so destroyed, like mine.

    Hugs everyone.
  17. starcycle

    starcycle Guest

    I'm taking LDN for about a month and it's doing absolutely nothing that I can tell. I think it probably doesn't work for CFS, only sometimes for autoimmunities, but I would wait anyway just in case.
  18. SickOfSickness

    SickOfSickness Senior Member

    Messages:
    1,823
    Likes:
    914
    US
    I think my CFS has to do with one or more viruses, but I thought they could be autoimmune (catch the virus which then confuses the immune system)?

    People say LDN works on XMRV.
  19. SickOfSickness

    SickOfSickness Senior Member

    Messages:
    1,823
    Likes:
    914
    US
    Anyone who was on antivirals and didn't stop them, I would complain to the lab and try to get it done a second time at a lower cost.
  20. SickOfSickness

    SickOfSickness Senior Member

    Messages:
    1,823
    Likes:
    914
    US
    I am feeling like maybe I should test for the culture/PCR now. Then start on the LDN. Then later can test antibody, because LDN wouldn't affect that one. But did I read that the culture/PCR test going to be improved too, or when they talk of improvements do they just mean the new antibody type tests?

    BTW for anyone wanting to test for HHV-6 or Lyme, make sure you do it through the good lab(s). Which is more expensive obviously. And most docs will think HHV-6 means nothing since it is fairly common. CMV also docs won't care about. I'm not sure if CMV has to go through a special lab.

See more popular forum discussions.

Share This Page