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Red labs XMRV serology testing... any experience,insights or information?

Discussion in 'XMRV Testing, Treatment and Transmission' started by Starlight, Oct 4, 2010.

  1. Starlight

    Starlight

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    Hello,

    I was just wondering what peoples experience of using Red Labs in Belgium for XMRV testing has been?

    I have tried ringing this week to ask about the new serology testing that they're offering but the person I spoke to seemed very unsure of what I needed to do for the test. He wasn't sure if it should be centrifuged and he said it would "probably" be ok if the sample reached them within 48 hours but he wasn't positive.
    I know that Biolabs in the UK and VPDX in the US are extremely strict about samples getting to the US within 24 hours of being taken and they do require that blood is centrifuged.

    Does anyone know how the sample should be prepared for the serology test in RED Labs and if there is a definite time limit that should be kept in mind?

    It's alot of money and heart ache to receive a false negative just because I didn't properly get the practical aspects of the test right so I'm nervous about doing anything wrong.

    Thanks for reading.:Retro smile:
     
  2. Jemal

    Jemal Senior Member

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    I have exchanged e-mails with Red Labs as I have the same concerns as you. The serology test is very new to them as well, it's not even on the (Dutch) application form. At the moment I just can't convince myself to do the test, because I am afraid it will turn out negative, just like you (concerns being mishandling the blood on my part and them acknowledging the test is not fully reliable yet). I also don't like the fact I can't get a testkit with the correct tubes for the tests. I have a doctor willing to draw my blood, but I'm not sure if he has the tubes. At the moment I think the test is too much hassle and is too expensive for me, especially because it's not fully reliant. And even if I am XMRV-positive, I can't get treatment...

    Anyway, the company where I am employed might pay for the testing, so that would eliminate one of my concerns. We'll see...
     
  3. Berthe

    Berthe Senior Member

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    near Antwerp
    I delivered my blood ( a lot of tubes) yesterday personally at Redlabs in Brussels.
    I had my family doctor taken the blood in the prescribed tubes for both tests. The culturetest and the serologytest. For the serology you only need one serumtube, also called yellowcap. The blood needs to be delivered in 48 hours in the Lab, and will there be processed and deepfrozen. Redlabs will send it to Nevada. They don't know how long it will take for you to get the results, because that is depending on the lab in Reno.

    The dutch application form consists also the serologytest (219 Euro). You print it out and add it with your bloodsamples.

    The culturetest remains in Brussels and will be tested there in the lab. A very friendly man, named Jose, offered me immediately a chair and showed me a big pile of applicationforms. The results of the culturetest will come in eight weeks due to the overwhelming applications.

    I hope you have now the information you need.
    Good luck!

    Love,
    Berthe

    http://www.onwilliglichaam.blogspot.com
     
  4. Rivotril

    Rivotril Senior Member

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    the serology test is on the application form, and also on the dutch one...
    but i have the same concerns about the test as you have...
    it might not be super reliable, we dont know yet.

    But i think i will take it though
     
  5. ukxmrv

    ukxmrv Senior Member

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    Starlight, I spoke to Redlabs yesterday. They confirmed that for the new Serology test the blood must get to them within 24 hours. Apparently they have now double checked with VIP dx and this is what they will do from now. They will then centrifuge and blood and freeze/ship to VIP dx.
     
  6. Jemal

    Jemal Senior Member

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    They changed the application form then (that's good news) as the serology test wasn't on it last week (also confirmed by a Red Labs employee by e-mail).
    Anyway, I think I will wait a few more months. Hopefully the tests will get better and there's more information about the virus and a possible treatment. My condition has also improved a lot the last few weeks, thanks to a combination of some medicines, so there's less urgency for me. At the moment that is...
     
  7. ukxmrv

    ukxmrv Senior Member

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    Wishing you all the best, Berthe - waiting for the result was really hard indeed. Hope your time goes smoothly.

    Jemal - I quite understand about waiting. Although I tested earlier this year there is so much to consider about possible treatments and they all seem so far way/expensive. Glad you have improved!

    XMRV+
     
  8. Starlight

    Starlight

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    Thank you so much for that UKXMRV. I really appreciate.

    Thanks very much to everyone else who answered too. It's good to know that there are others out there feeling the same.

    Jemel I hope that you continue to improve. Keep doing whatever you're doing and come back and tell us what it is if it works!:)

    Berthe :good luck with your results and thanks for the info. It's a long wait although I think I'd find it even more stressful if we were going to be waiting only a few days. I can't help hoping that we are all positive.

    I'm not sure what I will do now. Part of me wants to have it immediately .I'm terrified I'll have put so much strength and energy into becoming an xmrv expert only to find I don't have it!! By the same token it sounds like red labs is only starting to find it's feet with the xmrv testing so it might be best to wait until they've some more experience under their belt.
     
  9. Berthe

    Berthe Senior Member

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    near Antwerp
    Hi UKXMRV, thank you for your best wishes.
    Also Starlight, I can't give a good advice. Although I find it comforting that I'm actually doing something instead of waiting much longer.

    It's very weird to see that most people here on this forum want to test positive, because it is nearly the opposite on the forum in Belgium. People fear the virus, because they don't know what will happen then. Are we going to be looked at as the next Aids patints? What if it's contagious? How will people react? What can we do about it?
    I would celebrate it with a bottle of bubbles (I'm alcohol intolerant :Retro wink:).

    My birthday is 24th of January and I hope I know the answer then.

    Love,
    Berthe

    http://www.onwilliglichaam.blogspot.com
     
  10. ukxmrv

    ukxmrv Senior Member

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    Berthe,

    Some of we old timers have already been through the retrovirus "scare" in the late 80's/90's and come to terms with it a long time ago. For new people I can imagine that it will be a terrible shock.

    I want to get better. Having a retrovirus to me, only means a possible cure finally after over 25 years of hell.

    When the first retroviral news came out a long time ago we faced our family and friends, and media etc then. We are more worried that it will be shelved again and back to a lifetime of hell with no cure.
     
  11. Jemal

    Jemal Senior Member

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    I am using a combination of medicines and supplements that are well know to most CFS patients :)

    Doxycycline (antibiotics) + Amitryptline (antidepressant, but can also help with pain and fatigue) + Ibuprofen (painkiller) + Vitamin D + Vitamin B12 + Monolaurin (in theory should work against some viruses) = improvement for me

    I am certainly not cured, I still have bad days and the fatigue and pain are always present. It's better though, some days a LOT better.
     
  12. Starlight

    Starlight

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    Berthe thats interesting that there is that perspective in Belgium. Personally I would be quite happy to dump a truck load of stigma and related isolation on myself if it meant that it increased my possibility of getting better. It feels now that CFS without XMRV is medical no mans land... there's no help, no understanding and no real hope of curing something that is not understood, not even acknowledged to exist.

    Where I am I feel that there's alot of stigma attached to having CFS as it is. I have family members who never ever mention it to me or ask how I am and do not tell people what's wrong with me even though I am very severely affected. They're presumably ashamed of the label "CFS" and all that goes with it. I can't imagine that any label would be much worse that what most of us have already gone through with CFS.

    I hope your test results will yield whatever result that is easiest cured for you. I'm alcohol intollerent but I have a bottle of champagne from Tesco downstairs thats ready to be popped when there's some very very good cfs news for me. My bubbly of choice is usually ginger ale! :)

    Same here xmrvuk... even down to the 25 years.I'm 30 now.
    It was this night last year I first heard of XMRV. I was watching Sky News at night and when they flashed up that the front page headline of the next mornings Independent was about a breakthrough in CFS I could not believe it. It was without doubt one of the most magical moments of my life... like an dream come true. I will never ever EVER forget it. :)

    Jemal : thank you a million for sharing that. I haven't heard of some of those before . I am going to start googling now. It was very good of you to share & its appreciated. :)
     
  13. AlexMac

    AlexMac

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    Be aware of both redlabs and vipdx testing!!!



    I got tested in December, I'm still waiting for the results. I recently learned that antibiotics and antivirals should not be taken in order to avoid negative results. I was on antibiotics about ten days before taking the test. I asked the redlabs for an explanation and they dismissed me, didn't want to know anything to do with it. Told me to contact Reno. I heard some patients in Europe complaining about the same situation.

    Here's the message I sent to VipDX concerning this problem :

    "Hello,

    Im contacting you on behalf of Mr Hernndez from Redlabs in Belgium since he was unable to answer my questions concerning the XMRV tests I took last December.

    Indeed, I took both the XMRV PCR and serology tests in December at the Redlabs. I was in contact with Dr Frmont and MR Hernandez. They told me that there wasnt any particular requirement (in terms of medication) for this test at the time. I paid 559 euros for both tests only to learn now that I shouldnt have taken antibiotics since according to the following Study in Norway: http://www.scribd.com/doc/50525150/P...ian-XMRV-Study antibiotics and antivirals might alter the results by increasing the risk of getting false negatives

    I asked the Redlabs for compensation since I WAS NOT TOLD about this problem BEFORE TAKING THE TEST and Mr Hernandez simply dismissed me by telling me to contact you.

    I live in France and I struggled to make it to Brussels on that day and I struggled to pay for such HUGE fees only to learn that my results may come out negative now. By the way I took the test on December 22nd and Im STILL WAITING FOR THE RESULTS. Mr Hernandez told me that the PCR would take only 10 weeks and that this test is performed at the Redlabs Im still waiting for the results. In spite of the fact that this test is performed at the Redlabs Mr Hernandez was unable to answer my questions and dismissed me by telling me to contact you for a test THEY PERFORMED in Belgium.

    I found this inadmissible! Redlabs treating patients in this way, they are only worried about getting money from sick and poor people and they do not take any responsibility on the tests they perform or how they perform them either.

    I wait for some clarifications on this subject. Im not the only patient in this situation"

    And here's the answer I got from the "Marketing and Client relations Director" (no formality phrases included in her answer):

    We have nothing to do with the way business is run in RED Laboratories Belgium. We are a separate business in the USA.

    In our lab in the USA, patients have been waiting up to five months for results due to an enormous backlog. For the culture, the cells must grow in culture for 60 days or more. In order to detect virus, it has to grow in cells when stimulated. Because this is a low copy and slow growing virus with high and low cycles, it is not always easy to detect. The serology test typically takes less time to report out. However, in our lab, we usually wait until both tests are completed before we report out the results.

    As far as taking medications, it would stand to reason that if you are being tested for a virus, you would want to be off anti-viral medication. It is also prudent to be off antibiotics as well to be sure results are not skewed especially for culture and antibody (serology) testing.

    Your payment issues are to be discussed with RED Laboratories Belgium as we did not collect any money from you and we cannot reimburse you for what we did not receive.

    Marguerite Ross, Director
    Marketing & Client Relations
    775-351-1890
    775-682-8281 Fax

    YES THEY, VpDx DID COLLECT SOME MONEY since the SEROLOGY TEST is not performed by the RedLabas (only the PCR TESTING is performed in Belgium), the SEROLOGY TEST IS STILL PERFORMED IN RENO!!!
    Concerning the answers I got from the Redlabs (they are all in French) and they simply say "we have nothing to do with this, go and ask VipDx in Reno".

    I hope this answers your question. By the way, If anyone had the same problems here I"ll be more than willing to start an action against the RedLabs to start with.
    Here's my email; alex.maclachlan@free.fr
     
  14. insearchof

    insearchof Senior Member

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  15. AlexMac

    AlexMac

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