1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
A disease with two faces? Re-naming ME/CFS
Persuasion Smith covers the bases on the misleading and disreputable name for our disease we've all been saddled with ...
Discuss the article on the Forums.

VIP Dx Culture Test Poll For A LATENT Infection

Discussion in 'XMRV Testing, Treatment and Transmission' started by Cort, Nov 1, 2009.

?

What is the Result of Your XMRV Culture Test?

  1. I have severe ME/CFS: I tested positive

    11 vote(s)
    16.2%
  2. I have moderate to severe ME/CFS: I tested positive

    16 vote(s)
    23.5%
  3. I have mild to moderate ME/CFS: I tested positive

    3 vote(s)
    4.4%
  4. I have mild ME/CFS: I tested positive

    0 vote(s)
    0.0%
  5. I have severe ME/CFS: I tested negative

    10 vote(s)
    14.7%
  6. I have moderate to severe ME/CFS: I tested negative

    25 vote(s)
    36.8%
  7. I have mild to moderate ME/CFS: I tested negative

    2 vote(s)
    2.9%
  8. I have mild ME/CFS: I tested negative

    1 vote(s)
    1.5%
  1. kolowesi

    kolowesi Senior Member

    Messages:
    260
    Likes:
    14
    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
     
  2. Kati

    Kati Patient in training

    Messages:
    2,118
    Likes:
    1,767
    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!
     
  3. Rafael

    Rafael XMRV+ Member

    Messages:
    66
    Likes:
    1
    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 ?
     
  4. ukxmrv

    ukxmrv Senior Member

    Messages:
    3,533
    Likes:
    2,087
    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+
     
  5. omerbasket

    omerbasket Senior Member

    Messages:
    510
    Likes:
    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.
     
  6. 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.
     
  7. Rafael

    Rafael XMRV+ Member

    Messages:
    66
    Likes:
    1
    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. "
     
  8. kolowesi

    kolowesi Senior Member

    Messages:
    260
    Likes:
    14
    Central Texas
    Thanks so much, Rafael. Good luck to all.
     
  9. oerganix

    oerganix Senior Member

    Messages:
    611
    Likes:
    5
    "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?
     
  10. ukxmrv

    ukxmrv Senior Member

    Messages:
    3,533
    Likes:
    2,087
    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.
     
  11. gracenote

    gracenote All shall be well . . .

    Messages:
    1,508
    Likes:
    44
    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:

     
  12. spindrift

    spindrift Plays With Voodoo Dollies

    Messages:
    280
    Likes:
    2
    XMRV negative by culture VIPdx :worried:
     
  13. ladybugmandy

    ladybugmandy *****

    Messages:
    25
    Likes:
    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
     
  14. camas

    camas Senior Member

    Messages:
    697
    Likes:
    196
    Oregon
    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.
     
  15. spindrift

    spindrift Plays With Voodoo Dollies

    Messages:
    280
    Likes:
    2
    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? ;)
     
  16. awol

    awol *****

    Messages:
    417
    Likes:
    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.
     
  17. Snow Leopard

    Snow Leopard Senior Member

    Messages:
    2,415
    Likes:
    2,073
    Australia
    Yes, either there is something wrong with the test or XMRV is not causative in more than ~50% of CFS cases.
     
  18. illsince1977

    illsince1977 A shadow of my former self

    Messages:
    356
    Likes:
    22
    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.
     
  19. Snow Leopard

    Snow Leopard Senior Member

    Messages:
    2,415
    Likes:
    2,073
    Australia
    Yes, WPI results should count on this poll.
     
  20. dipic

    dipic Senior Member

    Messages:
    215
    Likes:
    10
    That's a terrible, completely irresponsible thing for anyone, let alone a scientist, to say, potentially giving people false hope. [​IMG] 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.
     

See more popular forum discussions.

Share This Page