• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

VIP Dx/WPI Serology (Antibody) Test Results

My Antibody (Serology) Test Results for XMRV Were

  • I have severe ME/CFS: I tested positive

    Votes: 11 18.3%
  • I have moderate to severe ME/CFS: I tested positive

    Votes: 19 31.7%
  • I have mild to moderate ME/CFS: I tested positive

    Votes: 5 8.3%
  • I have mild ME/CFS: I tested positive

    Votes: 0 0.0%
  • I have severe ME/CFS: I tested negative

    Votes: 6 10.0%
  • I have moderate to severe ME/CFS: I tested negative

    Votes: 15 25.0%
  • I have mild to moderate ME/CFS: I tested negative

    Votes: 4 6.7%
  • I have mild ME/CFS: I tested negative

    Votes: 0 0.0%

  • Total voters
    60

omerbasket

Senior Member
Messages
510
Alexia-
That sounds painful. I hope they figure out an easier was to find virus in tissue.
As a person who underweny colonoscopy and gastroscopy a number of times, I don't think it's so painful. You know what? I even underwent sygmoidoscopy (a test in which they test just the lower parts of the colon) without any sedation or pain management - it wasn't painful (just a little bit uncomfort) and they took 3 biopsies from my stomach - a process that was also not painful and just uncomfortable. I'd undergo it again right now if they would offer me to do this in order to test the samples form XMRV/other MLV-related viruses. And I think that it is a thing that must be done in future studies, because we already know that it's hard to find XMRV in the blood of people, and even in the blood of rhesus macaques that were infected with XMRV - but much easier to find it in other things in the macaques body, like the intestines, including the colon.
 

subtr4ct

Senior Member
Messages
112
** If you are in the serology re-testing program (for previous culture negatives) call VIP to check on your results **


I have called and discovered that my wife's results were available 2 months ago, and VIP did not transmit them to us even though we sent in the fax release to have the results sent directly to us. Moreover, I know of another person who had a similar experience.

Good luck
 

ukxmrv

Senior Member
Messages
4,413
Location
London
I'm confused Subtr4ct (nothing unusual there!). Is that for people who paid for the original culture/PCR test, were negative and then promised a retest?
 

omerbasket

Senior Member
Messages
510
I submitted my bloodwork to VIP and just now received the results. Positive for antibodies, negative for serology.
I don't think that there is such a thing... The serology test is the antibody test... The other test is the culture/PCR test.
 

aquariusgirl

Senior Member
Messages
1,732
how long is vipdx taking to turn around the culture test these days?
and am i right in thinking they will wait for the culture result before releasing any results?
 

mojoey

Senior Member
Messages
1,213
Just found out I'm serology positive (as well as culture+). Like others have experienced, my results were shelved for months before I heard back, but it's good to have them nonetheless.

Doesn't change anything treatment-wise but it's good to know for future treatment vetting that I'm mounting some level of immune response to this virus.
 

ukxmrv

Senior Member
Messages
4,413
Location
London
Congratulations and commiserations Mojoey,

Hope this helps you in determining a way forward. How are OK feeling about the result?

XMRV+
 

TinyT

Senior Member
Messages
150
Location
Australia
Congrats/commiserations Joey. Can I ask, when did you get your blood drawn?

I had mine done on jan 13th, no results yet & nothing at the dr either. Now at the 12wk mark.
 

Snow Leopard

Hibernating
Messages
5,902
Location
South Australia
The reason why the results often take so long is because they like rechecking the results. This could affect the rate of false positives. On the other hand, no one can accuse them of doing this to make money..
 
Messages
13,774
I guess that things are so uncertain right now that we can't know for sure if there are any false positives... or false negatives... or anything.

It sounds like the Lipkin study will take ages, but clear it up, while hopefully the BWG will come up with something sooner.
 

ukxmrv

Senior Member
Messages
4,413
Location
London
It really was a question for Snow Leopard who specifically asserted that false positives were being produced by VIP dx.

Don't know if they mean a general uncertainty that they fear - it's up to them to answer.

Esther, I'm still waiting for a paper that refutes or disproves or seriously casts doubt on the original Science paper before I judge that things are so uncertain. That's hasn't happened. Do appreciate that others feel differently. I don't think that Lipkin will necessarily clear things up. After all, why make this judgement before we have even seen the paper. I'd rather deal with the known facts.
 

Francelle

Senior Member
Messages
444
Location
Victoria, Australia
I think Snow Leopard used the word 'could' which is a fair assumption considering that the more checks made then the less chance of false positives being published. It's only logical considering the XMRV climate to do this.
 
Messages
4
Location
Nevada
I noticed what I said was different from what I read here re: my XMRV test results. I had also meant to say I had the blood drawn Nov 23 of last year and just got the results about two weeks ago. Anyway, + for antibodies, neg for culture.
 

ukxmrv

Senior Member
Messages
4,413
Location
London
Francelle,

You are cherry picking the words there and didn't look at the entire sentance. Just making things worse really and not helping sort out this possible misinformation.

Still waiting for Snow Leopard or anyone to provide proof of these false positives. If they have it.

If not, we can just move and assume that there is no proof of any false positives.