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ME/CFS: A disease at war with itself
We can all agree that ME/CFS is a nasty disease, particularly in its severe form, but there are abundant nasty diseases in the world. What is unique and particularly confounding about our disease is that so much controversy surrounds it, and not only surrounds it, but invades it too.
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XMRV test Redlabs Belgium

Discussion in 'XMRV Testing, Treatment and Transmission' started by Rivotril, Jul 6, 2010.

  1. Alexia

    Alexia Senior Member

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    I can't explain the differences. It can be genetic, the food, more or less toxins in the environment or even the way people live and react to life.
    Portuguese don't easily get stressed about life pressures, in a certain way it's good but on the other end the society is disorganised, people are often careless and unprofessional. For me it's quite hard to live here because I'm certainly not like that. In my opinion if you are careless you have less stress and maybe less cortisol imbalances so if XMRV can be activated by stress maybe it gets less activated here.
    I lived in three other European countries and I know that the food habits are often very different. The diet of a Dutch or a Belgian is quite different from a Mediterranean diet. I don't know what else can be, as I said it's just my impression from living here. There are no studies so it's all impressions or speculations.

    How I became ill? that is the million dollar question. I was working very hard, I was doing a PhD. Just before I got ill I had a vaccination, I suspect a link there but I can't be sure. I ate healthy and did a lot of sports and I was happy. I find that I fit very well in the XMRV description (or with the little we know about it..) but I haven't been tested yet.
     
  2. Wasbeer

    Wasbeer

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    I was in Lisbon this spring, and that's where they tought me the expression: Taking it Portugueasy. Since then I'm trying to take life more Portugueasy, but I guess I'm just too Dutch for that.
     
  3. aruschima

    aruschima I know nothing

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    Hi Wasbeer and others

    Thanks for the update on RedLabs .
     
  4. Wasbeer

    Wasbeer

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    Ouch

    I just heard that my co-culture test for XMRV at REDlabs came back negative. I know I still have the backdoor of the serology test, but it will take some months before that's available, so that....eh....sucks. I don't know if I understood this correctly, but I think this means that if I do have XMRV, it's in a non-infectious state. Does this also mean that, if tested positive in serology, XMRV plays a less important role in my body (and with less chance of succesful treatment later)?

    If there's anybody who can answer this question , or put some numbers on the chances I still have for testing positive in serology, you're more than welcome. It would be very much appreciated. Yes, I know, I'm one of those crazy people who actually WANTS to have a retrovirus, because in my simple mind retrovirus=possible future treatment=possible life back one day.
     
  5. mhj

    mhj

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    :rolleyes: Well, i have to admit that that is crazy Wasbeer:D

    Mine test are probably done by now, and i really dont want to be positiv. I have kids so who knows when i evt got infected :worried:

    I have one test in redlabs freezer.
    and i have one test performed by WPI, so i can be garantied that the testresult will be 100% correct.

    Begging for negativ results here!!!!!!!!!!!
     
  6. ZoeHines

    ZoeHines

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    Wasbeer, you're not crazy!! There are alot of us that WANT to test POSITIVE for XMRV... Sounds crazy but yes 'retrovirus=possible future treatment=possible life back one day'
    I hope you're doing ok after your results, I hope someone can answer your questions on the serology test.
     
  7. Alexia

    Alexia Senior Member

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    Hi Wasbeer,

    Thank you so much for sharing your results. I'm sorry you were disappointed with the results. I understand that it would be easier to have a positive result because then at least you know what you have!
    I think you can still have a positive serology test. The chances of having a positive serology test result must be the same as in the Science paper, the first results they got were positive in 68% of the patients and then later using the serology test they got 95% positive (if I remember well the numbers.. somebody can correct these is they are wrong).
    It must be awful to have to wait but in a couple of months they will have the serology test in the Redlabs and then you can know for sure. Even if the serology test will also be negative then at least you know that you don't have a retrovirus and maybe your chances of recovering are higher then having a retrovirus in your body.
     
  8. Rivotril

    Rivotril Senior Member

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    lets consider the most well known retrovirus, HIV. in HIV there's generally only tested by serology.and if you test positive you have HIV, and that;s it...no regular doctor then also tests you on culture/pcr to see how active the infection is..you just get antiretrovirals then, which works to surpress the virus. (as far as I know)
    They never say thinks like: "oh you're positive on HIV by serology but maybe its in a non infectious state"
    They just give you antiretrovirals, and people are feeling better with these.
    I don't know much about medicine, so anybody correct me if i'm wrong.

    And I also want to be XMRV+, if i could do a wish (and lets assume i couldnt wish to just be healty again) then I would wish to be to be XMRV+, for the same reasons as you have. If most of us/all are, there will be medication and treatment and our lifes back
     
  9. guest

    guest Guest

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    Same here. I don't think that chances for recovery are higher when you don't have a retrovirus.

    XMRV = treatment = minor to full recovery + lots of science which highly increases the chance for full recovery = hope = life back

    No XMRV = highly unlikely to find the cause very soon = no treatment = no life + only very little science, so no breakthrough soon

    If someone with CFS does not hope to have XMRV his symptoms cannot be that bad. I would consider this person to know only very little about how bad this illness can get.
     
  10. ukxmrv

    ukxmrv Senior Member

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    Wasbeer,

    I'm really sorry to read about your negative result. That puts you into a limbo sort of state until we have access to a better test. There are many people who have paid for the Culture test in the same boat. Those of us who paid to be tested have always run the risk that if the test was negative it could be a false negative. A really hard choice to make for patients.

    XMRV research is in such an early stage that we don't even know if blood is even the best way to find the virus. It may be, that in your case, a tissue biopsy would be best, but we simply don't know yet.

    So, your negative result doesn't mean that XMRV is ruled out. You know all of this already though. Please don't despair although this is a very hard path.
     
  11. Wasbeer

    Wasbeer

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    Wow folks,

    I am truly touched by all of your wise and caring words. Thanks a lot, this means a lot to me. This forum is a very special place. I know I still have a reasonable chance to test positive after all, I knew that all the time, but despair can be a poisonous emotion, so your words help me put things in perspective again. For me it's hard to imagine that IF XMRV turns out to be causative for ME/CFS, I won't have it, cause when I read the Canadian Criteria: that's me, that's what I have. So for now: patience. And the feeling I'm not alone in this.

    Eelco (Wasbeer is Dutch for Racoon)
     
  12. Rivotril

    Rivotril Senior Member

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    Wasbeer,

    big thnx to you also for bringing the Redlabs info!
    My blood is frozen, also waiting for the serology test
    I'll skip the culture thing and I'll be patient too :)

    Hope to hear something about other people already tested at reblabs soon..
     
  13. cansado

    cansado

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    Hoi Wasbeer en others,

    Wasbeer, you are not crazy for wanting to be positive!!

    I am one of the REDlabs BXL patients who is positive for XMRV. Was tested last November, and received word last June. It is already impacting my life but that is a personal story.
     
  14. eric_s

    eric_s Senior Member

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    I wouldn't worry too much either. I initially thought i will take the test as soon as possible, but now i might wait some more. If the Alter or Bateman or another study is out and confirms the XMRV/CFS connection, then i will certainly get tested immediately.
    If XMRV is the only cause of CFS, and you obviously have CFS, then you also have XMRV. If XMRV is not the cause, then it doesn't matter anyway. If it's just one possible cause, then you might be even better off with belonging to another subgroup.
    What we really, really need is for them to finally understand CFS. Then we will get treatment. The personal test result at this point does not seem so important to me now.
     
  15. cansado

    cansado

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    I think if you have the opportunity you should get tested for XMRV. Of course it depends on your personal situation but if you are positive you can take precautions because after all it is transmissible!

    Just my two cents!
     
  16. sphynx on roundabouts

    sphynx on roundabouts

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    Hi Wasbeer,

    I've been following your thread and wondering how you are feeling now that a little time has passed? Considering there will be opportunities for those who test positive to try some targeted treatments in the future (near future hopefully), I think you would be crazy if you didn't wish to test positive! I am sending you a pm.

    We are all so marginalized with this illness and the idea that between 20 and 30% of us will test negative is rather daunting considering we are all so sick and all need treatments - yesterday! I've heard Judy Mikovits say on a number of occasions that even though some CFSers might not test positive that it is unlikely that they do not have xmrv. She has said that the sickest do not have antibodies to it and that others will not be in the infectious state when tested for culture. Have you seen the Red Labs website where they say that a negative culture test does not mean that you do not have the virus?

    Cansado, thanks for sharing that you tested positive but sorry to hear that it is already impacting your life. I guess this is normal in these circumstances but I hope the future will be brighter for you. Are you being guided towards any treatments as yet?
     
  17. Wasbeer

    Wasbeer

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    Hi sphynx and others,

    at the moment I'm feeling like a scrambled egg because I've had a tonsillectomy last thursday. That's why I haven't responded to some PM's, but I will as soon as I'm up to it. I will be in contact with Redlabs within a week to find out about some additional testing (urine, saliva) that Kristin Metzger wanted to do for her own research purposes. Besides that I'm feeling quite calm about the subject. I'll take a rare opportunity to quote myself from an earlier post:

    "For me it's hard to imagine that IF XMRV turns out to be causative for ME/CFS, I won't have it, cause when I read the Canadian Criteria: that's me, that's what I have. So for now: patience. And the feeling I'm not alone in this."

    Back to bed now, take care everybody
     
  18. mhj

    mhj

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    Redlabs and XMRV testing

    Hi ;)

    Summary from Rutt's meeting with KDM 5 aug 2010:
    http://merutt.wordpress.com/2010/08...-av-dagens-konsultasjon-med-prof-de-meirleir/

    Translatet from this:
    Hope that will help you a bit.

    ....and i will stress this a bit........:

    "but stressed that it was equally important to continue to treat it that made the immune system out of balance eg dysbiose and leaky gut. It is probably not only XMRV that lets you get ME/CFS"

    .....becasuse of that some belives that if you only gets treated for your XMRV+ , that you will be functional recovery "over night". I am sorry, but the road of recovery is not that easily....

    OK?

    Regards ;)
     
  19. ukxmrv

    ukxmrv Senior Member

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    I was completely well and had no gut issues before the acute onset viral illness that struck overnight.

    For some of us XMRV may be the major part. I suspect that over the decades I have accumulated other pathogens and obviously I will need to work on those as well.

    XMRV+
     
  20. ukxmrv

    ukxmrv Senior Member

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    Diesal,

    Redlabs went to Nevada and had training using WPI methodolgies. They are licensed for the same culture test that VIP dx offer now. The antibody test is still being developed. VIP dx tell me September now. Not sure when Redlabs will release it.
     

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