VIP Dx Culture Test Poll For A LATENT Infection

What is the Result of Your XMRV Culture Test?

  • I have severe ME/CFS: I tested positive

    Votes: 11 16.2%
  • I have moderate to severe ME/CFS: I tested positive

    Votes: 16 23.5%
  • I have mild to moderate ME/CFS: I tested positive

    Votes: 3 4.4%
  • I have mild ME/CFS: I tested positive

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

    Votes: 10 14.7%
  • I have moderate to severe ME/CFS: I tested negative

    Votes: 25 36.8%
  • I have mild to moderate ME/CFS: I tested negative

    Votes: 2 2.9%
  • I have mild ME/CFS: I tested negative

    Votes: 1 1.5%

  • Total voters
    68

kolowesi

Senior Member
Messages
267
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16
Location
Central Texas
I just got my test results back and I tested negative. I first requested a test kit in November, and they contacted me in March. Then it took about 4-5 weeks to get results, which went to my doctor. My test just says "Negative."

Since early on I had greatly reduced counts of B and T cells, and I have acquired a lot of new infections as time goes on, I know for sure I have something wrong with my immune system. I guess I'm back to square 1 for now.

Eventually, maybe I will have the antibody test, but I'm inclined to wait until it's available locally. I wonder if the blood samples are holding up because I tested negative for mycoplasma until the blood was taken near the lab. (I realize cell-wall deficient bacteria and retroviruses are not the same, but they are not all that dissimilar either.)

Anyway, good luck to all of us. Don't give up, I'm telling myself.

Kelly
 

Kati

Patient in training
Messages
5,497
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19,640
Kelly, welcome to the negative-but-sick club. I got my results in February. VIP Dx will retest your sample with antibody for free, so no need to get it redone. The only thing is they told me it would be ready by the end of the summer. And I agree with you, don't give up!
 

Rafael

XMRV+ Member
Messages
66
Likes
1
Location
Ontario, Canada
I just added my Cousins result to the Poll: Severe ME and Negative.
She was quite disappointed - as she had some "I told you so" letters to certain MDs half-written.

Kati wrote "VIP Dx will retest your sample with antibody for free, so no need to get it redone. "
I have heard this second-hand before .... does anyone have a link to a confirmation by VIP ? Was one of the 3 test tubes saved for this ?
I'il send an e-mail to VIP in the meantime asking the same.

I sent my test the day after my cousin did ... what's this drum roll in back of my head ?
 

ukxmrv

Senior Member
Messages
4,413
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4,612
Location
London
Rafael,

VIP dx had the part about the retesting in one early version of the standard letter that went out with the test kit. It was on my test kit from December 2009.

Then they removed that offer in writing from the standard letter inside the kit.

Please let us know what they say in the email reply your receive and good luck for your own test.

XMRV+
 

omerbasket

Senior Member
Messages
510
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13
Rafael - tell your cousin not to be discouraged - the methods are not finding all the XMRV there is yet, especially when you both were not tested for antibodies. It's still very much possible that your cousin is XMRV positive.
 
D

DysautonomiaXMRV

Guest
I really feel for people still waiting, it must be immensely frustrating not knowing and hoping.

I'm from the UK and got my positive culture test (only through the help of a thoughtful ME patient) back in January within 5 weeks I think. The PCR was negative. I'm sure since then, the demand has sky rocketed and the people in the lab in Nevada are overwhelmed with tests needing to be processed. :ashamed:

If VipDX can't cope with the demand, could the WPI not license out the technology to anyone willing to re-sell the test? (Not just VIPdx) and on a global scale? I'm still puzzled as to why this hasn't been enabled unless they are waiting for the serology antibody test and knew that the culture method was too slow, too costly, took too many man hours, and tends to only 'detect' the more severly affected? (I am guessing the culture test only detects XMRV that has spread out of the DNA, and thus patients would be more disabled as it has (presumably) spread around the body and affected organs).

Thus the serology antibody test is very important to wait for, and will probably pick up most people with XMRV, rather than those who meet Canadian Criteria or who are home/bed bound. Stastistically we are told this is only around 25% of ME CFS patients. I'll get re-tested for XMRV antibodies (apparently it's free in a letter I was sent) even though I know I'm positive as it proves an immune response.

One tank of diesel in the UK, in an SUV, is $184.
I would imagine the XMRV serology test may be around $250.
Less than 2 tanks of gas to find out if you have a viral related neuro immune disease is very good value for money considering this is just being discovered and we're in very early days of science with XMRV.

Lets just hope the abilty to detect XMRV is sped up and offered to communities, world wide.
I hope you all get the answers you want soon, the best of luck to you all.
 

Rafael

XMRV+ Member
Messages
66
Likes
1
Location
Ontario, Canada
Thanks for the comments ... and I did get a reply from the VIP lab Marketing and Client Services Director (I like the answer: at worst a small handling charge)

My Q: '"VIP Dx will retest your sample with antibody for free (once that test completely developed - estimate
is end of summer), so no need to get it redone." Is this true ? Was one of the 3 test tubes saved for this ?'

Answer:
"This is somewhat misinterpreted.
We are developing a serology test. We do bank any left over sample after extractions and culture (if any). We do not know if the sample will withstand freeze-thaw cycles or we will require a new sample in a serum separator tube. It is all too early to speculate as the test is still in development. There may be a small handling charge associated (or there may not be).

I would hold off until the test is developed and we know more how samples will react once thawed, etc. "
 

oerganix

Senior Member
Messages
611
Likes
9
I really feel for people still waiting, it must be immensely frustrating not knowing and hoping.

I'm from the UK and got my positive culture test (only through the help of a thoughtful ME patient) back in January within 5 weeks I think. The PCR was negative. I'm sure since then, the demand has sky rocketed and the people in the lab in Nevada are overwhelmed with tests needing to be processed. :ashamed:

If VipDX can't cope with the demand, could the WPI not license out the technology to anyone willing to re-sell the test? (Not just VIPdx) and on a global scale? I'm still puzzled as to why this hasn't been enabled unless they are waiting for the serology antibody test and knew that the culture method was too slow, too costly, took too many man hours, and tends to only 'detect' the more severly affected? (I am guessing the culture test only detects XMRV that has spread out of the DNA, and thus patients would be more disabled as it has (presumably) spread around the body and affected organs).

Thus the serology antibody test is very important to wait for, and will probably pick up most people with XMRV, rather than those who meet Canadian Criteria or who are home/bed bound. Stastistically we are told this is only around 25% of ME CFS patients. I'll get re-tested for XMRV antibodies (apparently it's free in a letter I was sent) even though I know I'm positive as it proves an immune response.

One tank of diesel in the UK, in an SUV, is $184.
I would imagine the XMRV serology test may be around $250.
Less than 2 tanks of gas to find out if you have a viral related neuro immune disease is very good value for money considering this is just being discovered and we're in very early days of science with XMRV.

Lets just hope the abilty to detect XMRV is sped up and offered to communities, world wide.
I hope you all get the answers you want soon, the best of luck to you all.
"If VipDX can't cope with the demand, could the WPI not license out the technology to anyone willing to re-sell the test? (Not just VIPdx) and on a global scale?"

It was my understanding that they do license the technology to other labs. Am I mistaken? Maybe other labs are waiting to get the proven technology before jumping in?
 

ukxmrv

Senior Member
Messages
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Location
London
It seems to be taking a long time for other labs to get up and running. Redlabs in Belgium went for training months ago but are still not able to offer the test. I emailed them recently to ask. There may be others labs that are not up to speed as yet.
 

gracenote

All shall be well . . .
Messages
1,537
Likes
78
Location
Santa Rosa, CA
A group of us had our blood sent to Panorama Labs as they were trying to develop a commercial test for XMRV. I was told that Panorama was working with WPI to create their test. I received this response last week:

You recently participated in a study to develop testing for the XMRV retrovirus through Panorama Labs. We thought we would have information for you much sooner than this, but XMRV has turned out to be a much more difficult virus to test for than originally thought. Panorama was not able to isolate the DNA of the virus in a single sample we sent them, even though some of the people tested had already shown positive in tests at other labs. Originally Panorama told us they would continue working with the testing, but more recently they seem to have stopped work on it.
 

ladybugmandy

Senior Member
Messages
25
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0
far as i am concerned, we are all positive. dr. mikovits (bless her heart) told me she is convinced i still have it but its in my tissues. i tested neg on everything - includiing the older antibody test. there is a newer test now but it's not commercially available yet.

ugh....i hope she is right. maybe ill be lucky enough to know what i died from

:-/

ps..sorry..today was BBBAAAAADDD
 

spindrift

Plays With Voodoo Dollies
Messages
286
Likes
16
Sorry to hear that, spin. Looks like you are in good company according to the poll. I hope we have a good standardized test soon.
I feeling a bit better about it now. I knew I would be taking a chance for a possible false negative. Gerwyn saved the day for me by saying if I am XMRV negative then he is Simon Wesseley. Now who needs blood tests? ;)
 

awol

Senior Member
Messages
417
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0
While I am not quite as convinced as Gerwyn that XMRV will prove to be the cause of ALL cases of CCC ME/CFS, and that there is absolutely nothing else out there causing similar symptoms, I do think there will prove to have been quite a lot of false negatives in these early tests. Noone should believe themselves to be XMRV- until very reliable tests come out.
 

illsince1977

A shadow of my former self
Messages
356
Likes
28
I just found out I'm positive by culture at WPI. This poll was specifically testing by VIPdx. Are results through WPI considered VIPdx or not? I will vote in the poll if If you are including WPI.
 

dipic

Senior Member
Messages
215
Likes
10
far as i am concerned, we are all positive. dr. mikovits (bless her heart) told me she is convinced i still have it but its in my tissues. i tested neg on everything - includiing the older antibody test. there is a newer test now but it's not commercially available yet.
That's a terrible, completely irresponsible thing for anyone, let alone a scientist, to say, potentially giving people false hope.
Stuff like that really makes me angry. Seeing her talk about finding XMRV in Autism patients (and publicly speculating about a vaccine to autism trigger) despite not having published any data whatsoever or evidence to show for it, especially in the light of the recent negative XMRV/Autism studies piss me off. She (the WPI) had better really, truly have a lot that they are holding out on us for the moment, or they will have lost all of my respect. All this hype and raising up a ton of peoples' hopes better not be all for nothing.