xmrv testing..alot of negatives

Discussion in 'Fibromyalgia Main Forum' started by ladybugmandy, Dec 27, 2009.

  1. ladybugmandy

    ladybugmandy Member

    hi all. so far, only a few people i have spoken to have tested positive for xmrv. someone i know who has had CFS for a long time with all the immune markers - one of the first to be helped by ampligen - has just tested negative too. peterson thought she would have it for sure.

    this is very worrisome. i cannot take another dead end.

    i heard some lyme docs are going to start their own xmrv testing lab and are claiming their techniques will be better.

    i have a feeling that i will test negative to culture and PCR but positive when the antibody test becomes available. i should probably have waited and saved $650.

    ugh
  2. fight4acure

    fight4acure Member

    One reason why I have not been thrilled about this new discovery of XMRV in people, like me, with CFS, is because of all of these random research results. I do not believe it is just one virus, but a whole load of viruses attacking us. the first thread on research articles has a discussion with Dr. Johnson in Indiana. He discovered this with FMS and CFS. So, I tend not to get excited anymore when I see new discoveries. I will collect the articles on here, but for the most part, I still think it is going to take a good decade for researchers to get a bigger piece of the puzzle solved in this mysterious illness of ours.

    I am glad you took the test. I cannot afford to. We'll just wade it out. Testing positive or negative might help, but remember that CFS and FMS is a highly complex disease, and it will, in my opinion, take more than an anti-viral medication to help us out.

    Hugs!
    Fight :)
  3. slammed

    slammed Member

    hi sue,

    when and where did you send your blood for testing?

    if i should already know this, please forgive me. I'm going to plead "almost brain-dead" defense!

    my own testing was positive for both parts(whatever they are); i need to go back and study harder, but figure what's the rush right now? Everthing, everywhere is shut down for the Holidays. Dr Mikovits personally confirmed my results verbally, but i was in such a haze at the time ... no paperwork yet , so i'm just on hold. Whatever.

    this whole Ampligen thing is irritating to keep hearing about for around 25 years now, don't you think? they should have had it Done by now, if it's a good thing. otherwise, i see a big stock-manipulation process going on. maybe one of the biggest, longest lasting, ever.

    sue, it's a tough deal we have right now---> to hold on . it's difficult to think that things move so slowly. but, check this out: my Veterans Administration appt, on Dec 23, the doctor said i should definitely take part in any trials coming up bc the VA "is years away" from getting involved in this fray. my only healthcare provider, grrrr

    so, stay in touch ok?
    [This Message was Edited on 12/27/2009]
  4. ladybugmandy

    ladybugmandy Member

    hi all. slammed..i sent blood to VIP Dx in Nevada...they are affiliated with WPI and are run by dr. lombardi... i think he was one of the authors of the Science paper..

    i didnt realize you had already tested positive...so you tested positive to both PCR and culture of the xmrv virus?
  5. UsedtobePerkyTina

    UsedtobePerkyTina New Member

    Klimas recommended not getting the test now. She said false negatives are very likely and many of us are so desperate for hope we couldn't take the news. And why get so discouraged when it may be wrong. She said the tests are ok for research, but they aren't refined enough for general testing of the public.

    I understand that some may think it will help with disability claims and possibly other important, more immediate reasons. But that doesn't increase the reliability of the tests. So those who get it for that reason may need to be tested again.

    I'm waiting.

    Tina

  6. ladybugmandy

    ladybugmandy Member

    hi tina....you are right. i just am so desperately ill and cannot bare it..i had to take the chance that it might be positive so i can start some sort of medicine asap. i really don't know how much longer i can make it.
  7. UsedtobePerkyTina

    UsedtobePerkyTina New Member

    What medicine would you have taken had you been positive?

    I didn't know docs were prescribing anything based on positive XMRV?

    Tina
  8. ladybugmandy

    ladybugmandy Member

    i didnt actually get my results yet...still hoping i might be positive.

    i would take azt 500 mg daily. i already found an infectious disease doc who tentatively agreed to give it to me (this was no small feet!)

  9. slowdreamer

    slowdreamer New Member

    I have no intention of getting tested until things are a lot more rigorous and will take Klimas advice. However whenever I read the discussions on XMRV I feel hopeful because of 2 things.
    We have now got top level multitudious researchers lookers at the biological scenario of ME/CFS

    Secondly the discussion resonates with my experience. XMRV is not just another flu virus , it is a retrovirus attacking out immune systems .. Also I note they can't exactly kill the Aids virus but the drugs can keep it well under control.Apparently XMRV is a simpler virus so it might be easier.

    Also remember the role of stress as indicated by WPI...Has a big effect on virus activity.
  10. slammed

    slammed Member

    sorry, i wasn't clear about my status somewhere in the past, sue. yes, i have "passed" both requirements now used in the test: the polymerase chain reaction(PCR) to amplify fragments of genetic material to enable detection of the virus, and a viral culture to confirm the results.

    these two parts are what is available at this point. i guess it's enough to qualify as good science, or WPI wouldn't be using it. Dr. Lombardi is a truly nice guy, and apparently a superb scientist also, as Dr Mikovits is quick to credit him with actually finding the virus during their research. (Somebody please correct me if i have misunderstood about this part.) so yes, he is one of the authors given credit in the research study's paper.

    as you might imagine, i am eager like you are for the next part to happen: treatment becomes available. i am also very sick, but likely not as badly as you have described re yourself. yes, we are all in this together; it's just that some are at more advanced immune system and other breakdown, and have suffered "who knows how much" damage. you and i are part of this really seriously-ill group.

    i am not too concerned about"false positives" here. as i once said to you, "trust" comes into play at some point. i feel that my own condition is so serious, what else can i do ? i can assure you, Judy Mikovits et al, are well aware of the extreme degree of illness that our disease causes, and she has a personal committment that is unparallelled. her team is dedicated to a degree i haven't ever experienced in any place i've been in my lifetime. i'm 63; been around a few blocks, and back again.

    hope this clears up things about why i'm as passionate as you are about getting to a treatment point.

  11. karinaxx

    karinaxx New Member

    Thanks so much for this link.
    I and my son are a patient of Dr.Meirleier (have not seen him since 2007, since i live in Asia) and i was looking desperatly for some news from him.

    If you have any more news about him and XMRV please post it!

    Thanks
    Karinaxx
  12. karinaxx

    karinaxx New Member

    and want more objective information.
    This article is not new, but well written, explaines what is happeing behing the scene now.

    The virus XMRV has become a favorite topic in the scientific community -- three years after its initial discovery in prostate cancer tumors by researchers from the Cleveland Clinic and the University of California, San Francisco.
    In October, a team of researchers from the Clinic, the University of Nevada at Reno and the National Cancer Institute reported finding the virus in the majority of patients they studied who had chronic fatigue syndrome. CFS is a debilitating disorder marked by profound fatigue, muscle pain, impaired memory and other symptoms. Its causes are unknown.
    That news came on the heels of another study, published in September, that revealed the virus could be an important marker for aggressive prostate cancer tumors.
    Capitalizing on the excitement and heightened spirit of collaboration, 75 of the top scientists nationwide studying XMRV are flying in to convene Wednesday at the Clinic.
    "This is the first meeting of the major players in the area of XMRV," said John Coffin of the department of microbiology at Tufts University in Boston. "I think there's going to be a lot of excitement and a lot of new information presented."
    XMRV is one of three known human retroviruses. The other two are HIV and HTLV (a type of virus that infects white blood cells and can cause leukemia and lymphoma). All three are transmitted through bodily fluids.
    One of the most striking things about XMRV is that there are indications that up to 4 percent of people in the United States carry the virus, said Coffin, who wrote an editorial accompanying a journal article on the link to chronic fatigue syndrome. "There might be other consequences of this infection," he said.
    The invitation-only gathering will be the first large meeting of scientists on XMRV since the National Institutes of Health's closed-door session last summer on the topic.
    The National Cancer Institute helped pull together key people involved in various research projects, said Robert Silverman, a cancer biologist at the Clinic's Lerner Research Institute. "It's been about two months in the making."
    It will be a chance for researchers not only to swap information but to form new collaborations.
    "We're learning things at such a rapid pace that we need a venue to exchange ideas and information," said Dr. Ila Singh, a professor in the University of Utah's department of pathology and senior author of the research involving prostate cancer patients.
    "I'm hoping for a deeper understanding. We know so little at the moment. I'm hoping to learn more about the virus," she said. "That's what's sorely lacking. There's a lot of speculative information . . . I want to know what's real."
    In advance of Wednesday's meeting, Silverman, one of the researchers credited with the initial discovery of XMRV, spoke with The Plain Dealer:
    How did XMRV get its name?
    It's a descriptive name. Xenotropic, which means the virus came from mice but mice are immune to its effects. It does affect other animals. Murine leukemia, which is the parent virus. Related Virus.
    How does XMRV affect animals?
    XMRV is closely related to a virus that causes leukemia, lymphoma and neurological diseases in animals. [Research] suggests that the human version could cause similar disease.
    How did humans acquire XMRV?
    We probably acquired it from mice because that's where the prototype exists. At what point it crossed over to humans we don't know. It's probably something that's been out there for a long time. Maybe many years.
    How is XMRV spread?
    That research is in the planning stage. What we're doing is trying to develop diagnostic assays to assess who has it and who doesn't. We're trying to determine how the virus is transmitted.
    With the new possible link to chronic fatigue syndrome, does this make getting funding for XMRV research easier?
    The funding part remains to be seen. There's been a tremendous interest in chronic fatigue syndrome. I've been getting almost nonstop calls from doctors and patients. They're obviously looking for hope in this study, although the virus is not proven to cause CFS. That's still unknown. But until it's ruled out, it's going to obviously be a subject of great interest.
    Have the research gains since your findings three years ago been significant enough that investigators are hopeful about what may be around the corner?
    It was kind of a sleeper. We published in 2006. There were really only a handful of papers published in the first couple years. It takes time for scientists to mobilize and perform research. Now there's a flurry of publications working on it. The field is exploding. It depends on whether we can nail down if this is a disease-causing virus. The potential of this is enormous. If it is proven to cause prostate cancer or chronic fatigue syndrome, then there would be the potential for new methods of diagnosis, new methods of treatment -- antivirals, even for prevention. That's why we're so excited about the prospect.
    What about the recent study by German researchers in the journal Retrovirology that found no link between XMRV and prostate cancer?
    It is not atypical of science for different groups to get different results. There could be methodological differences. I believe our methods were more sensitive. They may have missed it. Or it could be a different strain. Another interpretation is that the virus is more prevalent in the United States than in Germany.
    Why should the average person care about XMRV?
    We don't know at this point if the virus causes either prostate cancer or chronic fatigue syndrome. Our results suggest that XMRV is a candidate for causing human disease. However, it's still in a relatively early stage of the research. There are potentially major public health implications of this virus, so there's an urgency to figure it out and move forward.
    What is the Clinic working on now in relation to XMRV?
    We're working to help develop a diagnostic test that could be applied to a large number of people. It could be developed pretty quickly, maybe in a year or two.
    We're really studying how the virus could cause disease at a very fundamental level. But a vaccine could be 10 years [away] or maybe longer.
    This is exciting research. We're working as hard as we can to help benefit patients.
  13. ladybugmandy

    ladybugmandy Member

    i've never seen this link before....thank you for posting.

    if it is true and demeirleir is finding xmrv in a majority of patients...hallelujah.

    slammed.....i want to congratulate you on testing positive. i really think this will be the beginning of the end of your suffering.
    [This Message was Edited on 12/28/2009]
  14. skeptik2

    skeptik2 Member

    I, too, get all my care at the VA, and know my dr will say the very
    same thing to me when I see him next.

    I suggest we contact our House and Senate reps (the ones who
    say they are working diligently on behalf of veteran's, especially),
    and let them know that we expect the VA to be in the forefront
    of getting vets tested for XMRV and doing clinical trials with the
    vets.

    Pressure on our reps is vital. I'm going to contact mine right
    away.

    Best to you,
    skeptik2
  15. hensue

    hensue New Member

    Slammed I really need to know what you are going to do? I am not apart of the VA and do not know anyone positive for xmrv but me yet.
    Do we have a group we can go to and share ideas?
    Slammed keep me in touch are you a gulf war vet?
    The reason I ask also is my son who is just getting out of army after 10 years.

    Thanks just tell me where our positive group is.
    what about all the people tested at WPI for the study where are they? We need to be talking to them

    Hang in there Sue, people are not around at holiday's. Chance of you being negative and it could be false.

    You know that, you must be having a very difficult day.

    Take care

    positive xmrv hensue
    [This Message was Edited on 12/28/2009]
  16. slammed

    slammed Member

    hello hensue,

    thankfully, we now have a direction to generally go toward: that is,to be ready when the initial drugs come out against xmrv. to accomplish this, i feel it's necessary to continue on with whatever maintenance program that has best served you up to now. we have to keep trying to stay as physically strong as possible, and it means more "management of symptoms" until we get to "treatment of the causal agent", in this case,xmrv.

    i signed on the line with WPI to participate in their 5 year study, so when the first meds are developed, i sure am hopeful to be included in the early groups to use them. my illness is at more than 25 years. i'm a mess, barely staying well enough to have half a life. who knows, i may have to relocate to Reno in order to more easily be part of the study. there is a V A Hospital there,but i'm not counting on them for much help,yet.They are laggards in CFS and Gulf War Syndrome. btw, i am a Vietnam vet, not the Gulf. Also, i don't care too much for Reno itself, but who knows?

    as to a formalized group that has tested positive and gets together and discusses the current status, there isn't one of those to my knowledge. folks live any number of places, so physically getting together would be problematic. someone might want to begin an on-line group i suppose, but personally i find that being in this forum and participating with others on all levels is just fine with me. Often i receive help, and sometimes i can give help to someone else... meanwhile, all who tested positive are "on hold", until DR Mikovits gets her first best drug ready. she says"sometime not too long after the New Year"(i'm speculating 3 months), but it may well be longer.

    ladybugmandy is feeling an urgent need to proceed out ahead of this time-frame due to she is feeling so darn sick...it's critical for her, and she may try to use AZT at 300 to 500 mg, as i understand her plans. Dr Mikovits warns against AZT for xmrv treatment, saying that cellular damage occurs in both infected cells and in non-infected cells. apparently, ladybugmandy has found a doctor who doesn't agree about that and will prescribe the low dose for her. We are pretty certain she's going to test positive ...results coming within a couple of weeks , right sue?

    the only people i feel a real need to talk with are the 1) Doctors who are aware of xmrv and will be treating their patients via guidelines put out by WPI; now, i don't have one of these fine doctors bc my health care is with the Vet Admin, and i can't afford private care. But hopefully hensue, you do have such a doctor and you are talking with him/her, and 2)the research people at WPI only when absolutely necessary,bc they are swamped with their current work. It's not so easy to reach them these days due to their big workload.

    However, if you were to ask within the forums to assemble a group that has already tested positive, some might come out. i'm ok with my own approach as it is now, but i'd participate on a group-level to a degree; meaning, my energy level is so low that i don't want to take on a lot more projects.

    again, basically"what am i going to do?" i'm now doing it. Judy Mikovits will come through, and we all go from there.
    [This Message was Edited on 12/28/2009]
  17. slammed

    slammed Member

    hello, i agree with you completely about letting our Congress persons know what we want them to do: get vets tested for xmrv, and get clinical trials . Do you remember/know Dr Montoya, who ran the valcyte study at Stanford? i was seen by him once at the Palo Alto VA; he was working in the Infectious Diseases Dept that day, and i presented with all classic symptoms of chronic fatigue syndrome, even said i thought i had chronic fatigue syndrome. his reply, very compassionately at least,"i'm sorry you feel so badly."But he was hog-tied by VA protocol, I guess, bc the I.D. Dept refused to see me again.

    treat each individual symptom, each in a different department, each with about a 3 month waiting period to get in: that's how it's done, and there is no mention of CFS or Gulf War Syndrome... they aren't recognized as existing. i feel it will be a long , drawn out battle until the V A gets on board treating us. it's all about the Money they will have to spend.

    best to you too
    slammed
  18. hensue

    hensue New Member

    I am with you on the energy level. I did email Dr Silverman today and thanked him also for his work on xmrv. He responded and was very gracious.
    Both parents died of cancer and I really believe they are on to something here.
    People do not hurt like this for no reason.

    You make suck good logical sense. About what you are going to do.

    I really would like to know about the other's who tested positive in the Science article. What are they doing about treatment? Who are they seeing?

    I did say to Dr Silverman I am waiting for the test to be validated.
    Thanks Slammed
    2010 Is going to be a good year for us I can feel it!
  19. slammed

    slammed Member

    hi sue,

    you and i each have been sick for a long time. i think i'm longer than you at my 25+ years.

    I tested positive to both PCR and culture / why wouldn't you too, possibly?

    i understand why you want a positive result: to fight a known enemy , and get out of the "unknown" realm. makes perfect sense to me

    take care.
  20. UsedtobePerkyTina

    UsedtobePerkyTina New Member

    I understand that it is more likely to get false negatives than to get false positives.

    I also noticed the two ways to test does not include antibodies. You mention seeing virus genetic material and growing a virus in culture.

    I think this virus goes into dormant stage, and is activated by cortisol, androgens and other infections or vaccines stimulating the immune system, where the virus lives. I think that an immune system cascade can be caused by XMRV, in some people, which is labeled CFS. I believe a person might actually have CFS symptoms even though the virus is dormant. That is because the CFS is the result of the prior activity of XMRV.

    So, I can see that unless antibodies are part of the test, there may be many false negatives.

    Of course, I could be completely wrong. I mean, it is possible I am wrong. LOL

    Tina