Discussion in 'XMRV Testing, Treatment and Transmission' started by Patient 2, Dec 1, 2009.
Free?? I didn't see that on their site. I'll do it if it's free!
want to get tested until I know it is using the same testing the WPI is using to get the 95% figure. I don't want to get a negative back and have any doubt about if I have XMRV or not.
They got 95% positives back from doing antibody test which right now is not available through VIP. They only do PCR and culture which is enough to tell you if you have an active infection
VIP only doing both tests
I posted this on another thread this is all on offer now ie both tests
XAND - XMRV screen by PCR with virus culture confirmation: Test Code XAND ($650)
Do both then
Mike, could you clarify what study you are referring to. There are several doctors who are doing replication studies at no cost to patients (Enlander, for one), but they aren't going to release the results to the patients.
I hope they are releasing the results, they list the test here at 399.00, which is still a big savings if we need to pay.
Got a letter
Hey, just opened a letter from yesterday, they said they would be mailing the results!
if you do both the PCR and the Culture then you can still have the virus in your body. Until an antibody test is offered you are not in the clear and should still not donate blood then. I will wait till an antibody test is offered before I am tested and in the meantime assume I have it and take the needed precations to avoid giving it to someone.
People getting the test results back and are happy they are negative could latter test positive on an antbody test according to what I am reading. I hope they realize this.
If you test positive on antibody test, doesn't it mean that you had the virus, but it's not active anymore? So if you test negative for PCR and culture, but positive on antibody, that means you have it under control? I would think i would still be happy with that.
Excellent point Patient 2. It also suggests that even as sick as many of us are, that it's possible that antiretroviral drugs may not be necessary to put it into submission (or 'under control').
Yes that would be good news
But it seems like some people getting back a negative result are assuming they don't have XMRV. A retrovirus is in your body for life. So even if you have it under control at this moment in time you may still be able to give it to someone else. That's the point I hope people are understanding.
A negative test result does not mean it is not in your body with these current tests and you can stil possiblyl give it to someone if it latter shows up in an antibody test.
I am also wondering, given the remitting/relapsing nature of ME, if XMRV, like Herpes viruses, can go in and out of latency.
Another good point, but extrapolating percentages from the study, keep in mind that the vast majority of the population (4%) that have XMRV are the "healthy" controls (10-12 million, vs. 1-2 million PWC's in the US alone)...suggests other triggers (chemical, mold, heavy metal exposures, physical or emotional traumas, depending on the case, etc.) or genetics, were or are involved, and may be the straws that breaks the camel's back...
I saw Dr. Klimas yesterday, and she discourages paying for the test right now, apparently it still has to be validated, projects possibly 4-10
waswondering the same thing myself Koan. And while it's doing this it could also be wreaking havoc periodiacally with our immune systems and helping reactivate other infections. That would help explain the remission/ relapse part of CFS greatly.
Maybe repeated testing over time would be needed to catch active infections of XMRV. Many people with Lyme test negative but have the bacterium in there body and are sick from it.
The test results people are getting back are telling them tehy do not have a current active infection with XMRV. That is all.
The test results do nt rule out you have a lfelong infection in your body with the Virus. And if the virus can reactivate it does not rule out it is what is making you ill.
Until an antibody test is available there are still so many questions as to whether or not XMRV is involved in each persons illness.
Do you believe this is why WPI got a higher percentage using the antibody test post science publication.
...months before it's validated?
Aww... (Sorry, totally off-topic!)
I agree, there are still a great many questions to be answered.
Can it reactivate like herpes viruses?
Does an initial XMRV infection damage us in some way which sets off a chain reaction, not dependent on ongoing active infection, ending with ME/CFS?
Are we already damaged, due to genetics/illness/injury in some other way which makes XMRV more problematic for us?
I keep reminding myself that I'm not nearly as smart as the people at WPI, not to mention the fact that science and medicine are NOT my fields of expertise, and that anything I could think of, they have thought of.
You can also try a Google Site Search
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