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!
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.
Discuss the article on the Forums.

If you test XMRV-, but have M.E. with immune dysfunction.......what then?

Discussion in 'XMRV Testing, Treatment and Transmission' started by TheMoonIsBlue, Sep 21, 2010.

  1. Tammie

    Tammie Senior Member

    Messages:
    760
    Likes:
    9
    Woodridge, IL
    just wanted to say that I have similar concerns....have not been tested yet bc I can't afford it and there is not a lot of point until they know more anyway

    ......however, I have all but a couple of the symptoms from the entire Canadian Criteria list- I definitely totally meet that definition of ME as well as the other less strict ones, and I just keep getting sicker & if I do not wind up being XMRV+, I am quite worried about what will happen re treatment, re SSRI, etc
  2. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

    Messages:
    3,945
    Likes:
    799
    Concord, NH
    Is the sample sent on ice or just at room temp?

    GG
  3. Stone

    Stone Senior Member

    Messages:
    371
    Likes:
    6
    NC
    The samples are sent at room temp, but must arrive at VIPDx within 24 hours of the draw. First you order your test kit (for culture, serology or both) from VIPDx, then they send you all of the appropriate materials needed for the specimen collection and shipping. You take the VIPDx test requisition to your physician who will sign it and supply a diagnosis code necessary if you are going to attempt to file with your insurance company. You then take the signed requisition and blood collection tubes and shipping materials to a lab and they will draw your specimen and centrifuge the serum tube (if you're getting the serology). You (or the lab) will then pack the tube in the supplied shipping box, place it and the requisition (and other completed paperwork if you have Medicare) into the FEDEX shipping bag (also supplied), affix the shipping label and then you take it to FEDEX for overnight shipping. You should have the draw done in the afternoon to insure it reaches Reno in less then 24 hours after the draw. Most overnight shipping arrives by 10:00 AM I think. The lab may be kind enough to call FEDEX to pick it up, but I did not trust this to the lab, I took it to FEDEX myself. Do not have your blood drawn on a Friday, Saturday or Sunday. Do not have it drawn the day before a legal holiday. If you do, VIPDx will not receive it within 24 hours of the draw and you will have to start all over again.
  4. ukxmrv

    ukxmrv Senior Member

    Messages:
    3,330
    Likes:
    1,762
    London
    There is the possibility of sending your sample on ice for the Serology test only. It needs to be centrifuged first though. Talk to VIP dx if you only want the Serology test only. For the other XMRV test ambiant temperature only.
  5. Stone

    Stone Senior Member

    Messages:
    371
    Likes:
    6
    NC
    I'm not sure what you're referencing in sending the sample on ice for the serology. The instructions in my kit say DO NOT send it on ice and also that the specimen will be rejected if it is sent on ice. Did you receive different instructions? I'm intrigued.
  6. ukxmrv

    ukxmrv Senior Member

    Messages:
    3,330
    Likes:
    1,762
    London
    Hi Stone,

    Yes the information came direct from VIP dx just at the very start when they announced the serology test was ready. They may have changed this by now.

    However, when I heard from Redlabs last night they were adament (and had checked with VIP dx) that their samples would be sent frozen for Serology only.

    I'm in the UK so it may be

    1. They will accept frozen samples only from agreed labs in Europe for Serology only

    2. They are still sending out the old information forms (as the old ones were quite specific on NOT freezing).

    (The other tests (i.e. culture) cannot be frozen, it was purely the Serology in the spun tube)

    or something else entirely.
  7. Stone

    Stone Senior Member

    Messages:
    371
    Likes:
    6
    NC
    Ahh, I see. Maybe it's samples from the UK then that are sent on ice. So confusing, all this. I wish they were more inclined to put better information on their web site. I know they're busy but if people could look up the info themselves they would save a lot of time answering questions in the long run. I mean, their website is rather sparse and not overly helpful in finding info which necessitates frequent calling and emailing from so many people for answers to very basic questions. Does anyone else think so or is it just me?
  8. ukxmrv

    ukxmrv Senior Member

    Messages:
    3,330
    Likes:
    1,762
    London
    Hi Stone,

    UK samples are not normally being sent on ice to VIP dx. It was mentioned at the start but found to be too expensive and the samples were getting through just fine anyway. There may be one different place which has done/are considering but overall it's not been popular/necessary.

    Sending on ice is something people can discuss with VIP dx and come to an agreement on. Redlabs in Belgium are freezing samples for Serology only and sending to the USA.

    I think that the problem is that they have outstripped their infrastuture and that includes the website. They were due to be moving now but even that is delayed.
  9. Xandoff

    Xandoff Michael

    Messages:
    292
    Likes:
    182
    Northern Vermont
    TO: The Moon is Blue (MIB)

    Me: EBV EA positive 6+ years even after over a year of antiviral treatment, IGG's through the roof
    HHV-6a positive (I think I went negative once over the course of treatment, haven't had it checked recently)
    Coxsackie B4 positive

    >>>>I just learned I was XMRV Positive in mid September 2010 and started Valcyte on October 1st. From what I am getting from the materials I have read is that the XMRV retrovirus affects the immune system in a way the lets the above viruses you have listed above flourish in your body. I can feel the valcyte working and I am clearer after on five weeks. I think the Valcyte stops the XMRV from replicating while it is killing off the HHV-6 and EBV and the other nasties. I have a long road ahead but I think the reason Dr. Lynch of the Northampton Wellnesss Associates in Northampton Mass put me on the Valcyte because my XMRV positive status is an indicator that the "other stuff" is there. This is all conjecture on my part and should be taken with a grain of salt. I can actually feel the Valcyte working. So far I have not had any undue side effects. Of course I will be tested tomorrow to see if it affecting my liver and other vitals. Hope this helps. Feedback anyone. Go easy on me, I have the vapours tonight. Good Luck MIB!
  10. heapsreal

    heapsreal iherb 10% discount code OPA989,

    Messages:
    7,141
    Likes:
    4,393
    australia (brisbane)
    i dont think valcyte is suppose to have any effect on xmrv but would effect the other herpes viruses that xmrv possibly reactivates through lowering our immune system.

    cheers!!!
  11. WillBeatCFS

    WillBeatCFS

    Messages:
    23
    Likes:
    4
    As for taking the sample to FedEx yourself, check your state. You can't do that in Washington (I asked) and I know New York has restrictions on blood via mail and courier, too. But labs (at least big ones) send blood out to specialized testing facilities all day, everyday. Ask the lab if they have regular FedEx pickups, and what time of day. If you're worried, wait to see it picked up. And the FedEx form should have a tracking number, if I remember correctly, and you could follow it through the system. Worry isn't good for you!

See more popular forum discussions.

Share This Page