Dr. Jay Levy found no XMRV in my blood

mojoey

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Just heard back from Dr. Jay Levy's office of UCSF (he was one of the first to identify HIV). He did not find evidence of XMRV in my blood.

I was XMRV-pos via culture from VIPdx, haven't heard back about serology yet. It seems most people to report back so far are negative for antibodies which is a bit worrisome. I thought antibodies would be be detected at a far greater rate than the physical virus.

A standardized assay cannot come soon enough!
 

heapsreal

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so being positive to culture but negative to serology, does this mean that our immune systems arent putting up an attack to this retrovirus as its not producing antibodies, maybe this is why its common to have poor nk function. I havent been tested for xmrv yet, but past tests for ebv many years ago were positive iGg but now i dont have any antibodies to ebv, the same happens for hep B vacination where i dont produce antibodies. Anyone else have similar problems, our immune system doesnt look good.

cheers!!!
Just heard back from Dr. Jay Levy's office of UCSF (he was one of the first to identify HIV). He did not find evidence of XMRV in my blood.

I was XMRV-pos via culture from VIPdx, haven't heard back about serology yet. It seems most people to report back so far are negative for antibodies which is a bit worrisome. I thought antibodies would be be detected at a far greater rate than the physical virus.

A standardized assay cannot come soon enough!
 

acer2000

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What tests does Dr. Levy do and did he offer any explanation as to why there was a difference in results between his test and the VIPdx one? Its not enough to say just "not positive", they need to figure out why.
 

Daffodil

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i wonder if XMRV is suppressing our bone marrow's ability to make antibodies.?

how can so many people have positive culture and no (or hardly any) antobodies?

makes no sense unless they arent using the most sensitive WPI methods...
 

mojoey

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I don't know about the testing method but I did ask him.

The serology question is a head-scratcher. So far, I think ONE patient (whom was negative via culture) is positive for serology.

* XMRV is in b-lymphocytes, so it's manipulating antibody production to itself specifically (since antibody production to reactivated opportunistic infections is still normal). Maybe:

* VIPdx is testing for the wrong antibodies. Singh found that "a positive sample usually contained antibodies reactive to at least two of the following three XMRV polypeptides: SU, CA and pi 5E" http://www.facebook.com/notes/xmrv-...s-on-xmrv-breast-cancer-prostate/472237776796. I don't know what antibodies VIPdx tested for
 

Cort

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I just got my test results back from the WPI. To my surprise I was positive - but it was a kind of a strange positive. Heres' what they said

Thank you for having participated in the recent research study, which
associated the virus XMRV chronic fatigue syndrome (ME/CFS). I wanted
to inform you that your tests indicated that you have positive evidence of
XMRV in your blood sample drawn earlier this year. As you know, we are
just at the beginning of understanding what this means and what the
implications may be for you.
I said this
I didn't think non-flu onset, pretty functional, supposedly pathogen-free me would be positive.
and I was told

It took a long culture and you have a strong antibody response..which may be protecting you..we have a lot to learn..we do have non flu like onset and pretty functional..then it just takes longer to detect.
I think there's still a lot to learn...it took a long culture so not much was there and then there
s Dr. Singh's statements about good antibodies and bad antibodies. She realized that some antibodies were showing up in healthy people; certainly the WPI and VIP DX are looking at both healthy people and people of CFS -- so I would think they would be seeing the same things and guarding against the same problems.

We shall see - there appear to be quite a few people looking for XM RV in one way or another. It'll the nice at some point to get clarity.

Dr. Mikovits stated the Blood Working Group hoped to have phase 2 done by the next Committee Meeting which is December 14.
 

leaves

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Wow Cort, that is big news, especially if it is unexpected.
Take some time for absorbing that, I needed to.
Welcome to the club.
 

Lynn

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I just got my test results back from the WPI. To my surprise I was positive
Wow, Cort that's great that you were able to participate in a study with WPI. Was the study looking at anything else besides whether patients have XMRV?

There's a bunch of people on a different thread (including me) celebrating the fact that we at last may actually be able to put a name to this awful disease and have hope for future treatment. I know this is very personal, but do you mind I ask if you are pleased or displeased by the result?

Lynn
 

alex3619

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Hi Cort

I find your comments on what the WPI said very very interesting. It might imply that remission and partial remission from CFS involves suppressing the virus, which implies it can come back. Once we can do viral load studies this question can be examined in large patient groups. Thank you for sharing this with us.

Bye
Alex
 

xrayspex

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That is interesting Cort, mine took a long time too and in some ways I am more funtional than some, kps 70 maybe, certain times of day sorta normal feeling others in bed......with variance of course, lately not so great cus working too hard to move out of my house.

anyway I don't know whether I should consider myself flu onset or not......in retrospect I have come to realize that the mono I had as teen/young adult that kept recurring over like 7 years probably had something to do with later getting a form of cfs 10 years past the last mono episode after a surgery, after having most of my 20s be really active and not feeling that I had a chronic issue. Now its been 20 years with chronic pain and fatigue and looking back I wondered if the mono was the beginning or part of it. but after the surgery when I didnt ever get back to 100% it wasnt like a flu onset, there has been a gradual changing of course but some problems remain similar all these years. Did you ever have any mono or something when young? And if mono was the onset of it and I was in remission for 10 years would mono be considered like a "flu onset" I wonder. Anyway, didn't mean to get off on such a tangent, but it dawned on me that its sort of a loaded question to be sure of when the original onset really was.......I used to get strept a lot as a kid too.......for all we know those things tie in and its a progression.

congrats.....it can feel good to have a partial explanation and name for things.
 

Sushi

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Very interesting Cort. I hope this is encouraging news for you.

So, you were positive by culture but they had to culture it for a long time, AND had a good number of anti-bodies in the blood. Is that right? VIP give us less personal commentary. For me it was just positive for culture: no antibodies detected. Wish we could get more results and use some evaluation tool to try to figure out patterns.

For me, I am relatively functional (I can take care of myself, drive, do errands a few times a week, but not "go out" to work).

Hope you are doing fine with this news,

Sushi
 

anncavan

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Just heard back from Dr. Jay Levy's office of UCSF (he was one of the first to identify HIV). He did not find evidence of XMRV in my blood.
@mojoey, I'm curious to your decision process on this... If you already had a result from VIPdx, why did you get tested again? And why by Dr. Jay Levy at UCSF. I've never heard of him, which doesn't mean much. But I'm shocked if there's a CFS/XMRV specialist in my back yard... Can you share any background on him or his test? Is he a researcher or practicioner?

Full disclosure, I was negative from Fry Labs (serology only) and I'm negative from VIPdx (serology only). I'm awaiting my culture from VIPdx. I read on their website that if you're on antivirals, there is a possibility for false negatives in the serology test. So I'm just waiting on my culture...

@Cort - you mentioned a possible assay by the next meeting in December!?! That's huge! Is that meeting open to the public via phone or anything?

Thanks!
Lannie
 

eric_s

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Thanks for sharing, Cort.

Can you tell us what study that was for? I find it very interesting to hear an interpretation by the WPI. And good to finally get a new indication when phase II of the BWG's program should be completed. Thanks to Dr. Mikovits for informing us about that.
 

shannah

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Lots of questions here for you Cort eh? So would a strong antibody response mean a strong immune system? Also, how long have you been ill?

I'm so glad the culprit has been identified for you.
 

slayadragon

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I may be wrong (please correct me!), but my feeling is that Cort is possibly getting less exposure to "bad stuff" in the environment than most folks on these boards (and, likely, than people in general who are being tested by VIP).

He's certainly made a big effort over the years to avoid bad locations anyway.

I wonder if his strong antibody response might be related to that?

How might that work, do we think?

Thanks, Lisa
 

Gemini

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And why by Dr. Jay Levy at UCSF. I've never heard of him, which doesn't mean much. But I'm shocked if there's a CFS/XMRV specialist in my back yard... Can you share any background on him or his test? Is he a researcher or practicioner?
Dr. Levy is a co-discoverer of HIV. According to Osler's Web
he wanted to study CFS twenty years ago but couldn't get NIH
grants to do so. Wonder if he's still interested in CFS research
and what he thinks of the XMRV discovery?

http://ari.ucsf.edu/science/scientists_levy.aspx
 

serg1942

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Congratulations Cort!!!

Many people do not know whether this is good news or not. I do think it is: If XMRV is the perpetuating factor of most PWC's, this is great news. If XMRV is just another "player" in the disease, then we have another "target" to pursue that can lead to new treatments and therefore to new opportunities to improve. Also, this would be great news, right?

BTW, I did have a clear sudden and non-infectious onset. It was a crystal clear toxic onset...

Saluditos,
Sergio