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XMRV results

bakercape

Senior Member
Messages
210
Location
Cape Cod. Mass
I don't

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.
 

Patient 2

Senior Member
Messages
171
people are currently starting to get back using all the testing techniques used in the WPI's 95% positive figure post Science publication?

Or are they being tested using the techniques in the Science study which gave a 67% positive rate?

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
 
K

_Kim_

Guest
Before you spend $600 on a test from VIP/WPI I would send too Cooperative diagnostics in South Carolina, it's free for participating in the study.

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.
 

bakercape

Senior Member
Messages
210
Location
Cape Cod. Mass
eveb

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.
 

Patient 2

Senior Member
Messages
171
bakerscape

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.
 

dannybex

Senior Member
Messages
3,561
Location
Seattle
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').

d.
 

bakercape

Senior Member
Messages
210
Location
Cape Cod. Mass
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.
 

MEKoan

Senior Member
Messages
2,630
I am also wondering, given the remitting/relapsing nature of ME, if XMRV, like Herpes viruses, can go in and out of latency.
 

dannybex

Senior Member
Messages
3,561
Location
Seattle
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.

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...

???
 

calzy

Senior Member
Messages
113
Location
Naples Florida
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
 

bakercape

Senior Member
Messages
210
Location
Cape Cod. Mass
I

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.
 

MEKoan

Senior Member
Messages
2,630
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.

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.

:confused: