Discussion in 'XMRV Testing, Treatment and Transmission' started by Rivotril, Jul 6, 2010.
OK, so would you recommend to do the culture test or just wait some more months?
I'm really not sure what to suggest Diesel. Most people I know are waiting. The problem is that the date keeps changing.
Talking bout mixed emotions! On the day that Judy M. broke the news on the Alter paper, and so much hope is glooming for those who are indeed XMRV positive, I got news from REDlabs Belgium that my co-culture result is indeed found negative by the head-clinician. The fear of being 'one of the CFS-patients that will be left behind because of not having XMRV' is growing again. I would suggest anybody to wait right now for the serology test. It will be available in a couple of weeks, probably september. Reasons: more certainty, less money, and testing negative on culture is not easy, although you know you might still test positive in the other tests to follow, it makes the waiting a lot harder.
Sorry to hear you're still in a state of uncertainty, Wasbeer - I agree that's the problem with the testing available in Europe at the moment. At least knowing one way or the other means that we can start dealing with it but with the REDlabs test method, for now there's the strong possibility of false negatives.
I'm waiting until a definitive test is available and we're a bit further down the line in terms of published replications of the WPI findings and maybe some indications of what treatments are indicated at this early stage for those who are XMRV+.
I don't want to have to deal with the psychological hit of being +ve and then have to wait ages to be able to do anything about it.
Thanks Sasha! Right now I wish I had been more patient too, but can't change that anymore. For some reason seeing Andrea Whittemore sitting in that chair on that Nevada Newsmakers video, looking quite healthy and happy, and talking about new treatment she is receiving that is XMRV-related, really did something to me. Help might be there sooner than we think, for those who are X+, so I'm hoping and even praying that my co-culture was indeed a false negative. Hope. It's a beautiful word, but for those who've been let down so many times, it's the scariest word in the dictionairy.
Yes, wouldn't it be fabulous if there is already an effective treatment! I have been thinking that even if XMRV is "it", we might still have years before an effective treatment protocol but of course with all the HIV research already done, we should be ahead of the game.
I just don't know how to feel about XMRV, emotionally. When I read something that backs up the XMRV/CFS connection I'm excited because it might mean we'll get treated and recover our health; when I read something that goes against it I'm relieved because it means I'm less likely to have a (scarey) retrovirus. Whichever way it goes, I'm going to have very mixed feelings!
But the suspense might have killed me before we get to the conclusion! :Retro smile:
I would much rather be positive, even if the virus could kill me tomorrow--at least there would be some hope. True, maybe the antibody tests will be + for most of us but its going to be really rough on those of us who test XMRV- even though we are just as sick. I suspect I will be in that group also because I can't imagine how I have a retrovirus (very low risk behaviors and no transfusions) and have no family members with a similar illness. Sorry to be gloomy but XMRV- patients could end up with less help than ever, if that is possible.
Although these are no official statements (the only official communication from REDlabs is via their website), here are some quotes from today's email-correspondance I had with Marc Fremont from REDlabs that I thought useful for this forum:
"I hope serology will be introduced in the coming weeks but we must get the antibodies from the USA, as it does not depend on us I cannot garantee any date. There is good hope that we will have the test ready in September.
I thank you anyway for your patience. We do our best, but the blood culture test is extremely time consuming, we also have to work on the other detection procedures, as well as on other tests not related to XMRV, but also relevant for CFS."
"We will start serology validation as soon as we get the antibody. In order to compare both approaches will test serum samples from patients that were both positive and negative by the culture test. We expect to get more positives with the serology...but we will see. "
Maybe it will help you to go back to the Science study and see what percentage tested positive with the serology test after being negative with the one you had.
And one of the presentations on the 1st International Workshop on XMRV is titled "XMRV induces a chronic replicative infection in rhesus macaques tissues but not in blood." So it might not always be in the blood or at least not replicating.
Either way, if XMRV is connected to CFS, they will now find out how CFS works and this should also lead to treatment for those who don't have XMRV (if there really are such cases).
I'm in the same position as you but at the moment, very little is known about transmission. I've seen suggestions that XMRV might be transmissable via airborne droplets (like a cold) in someone's early stages of infection, or maybe even via insect bites; or that you can get it by "vertical transmission" from your mother at birth. Then yesterday I heard some expert (Dr Katz? Can't remember) say that at the moment, we really know nothing about transmission.
Thanks, Wasbeer - that's very interesting. It sounds as though there might be an accurate test in Europe around the same time as the NIH/FDA paper(s) get published.
I've just checked in on this thread and my heart sank. :sad:
I was so hopeful for you Wasbeer that they would find the virus for you. I am scared to be in this poisition because, like you and so many others, I tioo have been ill for a very long time, am desperately sick and want to test positive because I see it as my only hope for any chance of receiving suitable treatment.
Me too, I was so happy to Andrea Whittemore being well enough to talk in the tv interview but now I feel a bigger distance between where I am now and the likelihood of testing positive and getting treatment that would mean that I'd have enough energy to talk every day and maybe walk around the house.
I guess we all must sick together now - positive and negative - for better or worse we have to move forward together.
For months red Labs had been saying that the culture test would be ready in a few weeks but unfortunately that turned to many months. I hope the scenario will be different for the antibody test and that it really will be available in September.
(If there was an Olympics for waiting I think we'd all be gold medalists by now :In bed: :wheelchair: :sofa: :sleepy
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