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Testing: VIPDX XMRV Culture/PCR Negative - Serology Positive?

Discussion in 'XMRV Testing, Treatment and Transmission' started by Elisa, Dec 15, 2010.

  1. Observations on Culture/PCR vs Serology

    Hi,

    I sent my blood into VIP DX on Sept 29 2010 - and asked for ALL tests to be conducted -Culture/PCR, serology (antibodies) for XMRV/MLVs.

    Un/fortunately, they only ran the culture and the results returned (on December 13, 2010) "none detected" or negative. They do have my blood so they will run serology - but it will take another 6 wks or more.

    I have a "severe case" (by scale) of ME/CFS - for more than 15 yrs. Fevers (for yrs), weakness (often floor-bound for long periods), pain, breathing and heart/OI/Neurocardiogenic syncope, dysphagia/swallowing problems (only liquids) mainly homebound.

    Am curious about the trend I see of one or the other test being positive. I am also trying to find statistics on % positive after a negative culture/pcr ("trying to prepare self" said in a Bridget Jones accent.)

    I have a quote from Dr. Cheney's newsletter:

    I have reviewed the recently returned serology data from VIP Dx. Of the 22 CFS patients returned with serology results to date, 2 out of 3 or 67% were reported positive who previously had been negative by PCR/culture. 8 were from the 12 reported as negative by PCR/culture using the LNCaP permissive cell line in the 47 consecutive Cheney Clinic case study done in late 2009. Of the eight, four were seropositive and four were seronegative. An additional four are either not returned as yet or a request for repeat was made (indeterminate). On the four reported as seronegative, one is part of a multi-member family in which all except this patient who is also the sickest are XMRV PCR/culture positive. One of the indeterminantes is also in this multi-member XMRV positive family category.​

    So it looks from Dr. C's information is 67% are shown to be positive AFTER being Culture/PCR negative.

    Looking for your observations or opinions on this...I'm betting many have studied these statistics too.

    I was pretty stunned yesterday with the negative result...it's a scary and desperate place to be in...sigh.

    Sincerely,

    Elisabeth


    * I changed the title of this thread to open it up to discussing the broader issues of the two types of testing - and obserations on correlations between those positive on one test and negative on the other...
  2. leaves

    leaves Senior Member

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    Hey Elisabeth,
    Sorry I have no smart ideas or theories to offer on this, I just wanted to send you my good wishes.
    I know how scary and draining it is to wait for your results, have been there.
    Do not worry. Try take a rational aproach: If you are positive, it gives you something to work with in the future. If it is negative, you also know more, you cannot lose by getting info.
    hugs.
  3. OurDayWillCome

    OurDayWillCome

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    Elizabeth... try not to worry too much. I was negative by culture but positive by serology. My symptoms were pretty mild until I had to have a surgical procedure. I know the waiting is horrible, but hold on!
  4. Alexia

    Alexia Senior Member

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    Portugal
    Hi Elizabeth,
    I'm sorry you are disappointed with the test results but as you can read in this discussion one result from one of the tests doesn't mean much. Also I was reading yesterday in a Dutch forum and a patient from KDM who was negative on both tests was tested by a biopsy from the stomach and the biopsy was Positive!!
    There is still a lot to know about this retrovirus and apparently it can hide in some parts of the body. This is all new so please don't get too disappointed with only one of the test results.
    Good luck,
  5. Hi All,

    Thank you so much for your insights!

    Leaves - Thank you for your wisdom and good wishes - it means a lot to me!

    OutDaywill Come - Thanks for sharing your experience and for the support - it's good to know. BTW - Did you get both results at once?

    Alexia - Thanks for the inspiration and hope - you are so right - there is still so much we need to find out about retroviruses.

    God Bless,

    Elisabeth
  6. OurDayWillCome

    OurDayWillCome

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    Elizabeth ;;;; I tested early, in April, at my request. VIP-DX contacted me later about retesting via serology, It took about 12 weeks for the serology results. In all, about 8 months. A long time! But it is worth the wait. Hold on!
  7. Hi OurDayWillCome,

    Your words are very comforting...thanks so much!

    I waited about 10-11 weeks - but 8 mos, wow! It's really interesting that they contacted you - I wonder if they knew then that they were missing a lot of positives that only serology would reveal.

    I will do my best to "hold on" - isn't it amazing it's just what I needed to hear.

    God Bless You OurDayWillCome,

    Elisabeth
  8. OurDayWillCome

    OurDayWillCome

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    You are welcome. Yes, I think they knew that the Culture would not catch everyone. If you read the forums, you will know that this little bugger is hard to find. I believe several who had tested early were also contacted. I do not have a diagnosis of ME or CFS, but have Dysautonomia/OI instead and clearly fit the Canadian Consensus Criteria. This is the reason I wanted to respond to your post. I'm glad my responses helped.

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