XMRV Test - important info

Discussion in 'Fibromyalgia Main Forum' started by ladybugmandy, Dec 28, 2009.

  1. ladybugmandy

    ladybugmandy Member

    if anyone is going to take the VIP Dx XMRV test, please be off all antivirals and antibiotics for at least 15 days before you take the test.

    i was not told this when i took the test!
  2. chrissy12

    chrissy12 New Member

    I had never heard anything about that until you starting posting. As you know, I am on valtrex and valcyte. Luckily, I haven't done the test yet. I was thinking about it though and I would have possibly skewed it.

    I hope your test will come out correctly. If you are negative, you may have to retest later after being off all of the meds.

    Thanks for sharing!!!
  3. fight4acure

    fight4acure Member

    Okay, thanks for letting me know. I'll take the new test they'll come out with, but I'll make sure I've been off the two types of meds.

    Fight :)
  4. ladybugmandy

    ladybugmandy Member

    hi all:) i emailed VIP and they said i could have the antibody test when it comes out, in 6 - 8 months. it wasn't clear whether they want me to pay for that or not.

    if i am positive to the PCR and/or culture, it will be a moot point...but i have a bad feeling i won't be.

    6-8 months is a long time to wait when you are hanging on by a thread!

  5. fight4acure

    fight4acure Member

    If they failed to give you the proper instructions the first time around, then the second time around is FREE! Talk to patient representatives, and if that doesn't work, let me know.

    Fight :)
  6. Empower

    Empower New Member

    How do you get "the test?"
  7. consuegra

    consuegra New Member

    This is a bit hard to believe. I called VIP today and confirmed that they do recommend that patients stop antivirals 15 days prior to doing the test. Yet there is no information on this in their instructional handout for doing the test. I am very careful about making sure all the variables are met in doing these tests, as these tests are complex and expensive. I was told that they respond when asked about antivirals - but that the information is not in their instruction sheet. The lab's explanation today was insufficient - in fact it was non-sensical. It looks like they lifted $640 out of my pocket. This is very hard to believe.

  8. ladybugmandy

    ladybugmandy Member

    dont take this sitting down. email them and demand a free antibody test if you are negative to the culture and PCR and were on antivirals.

    i am paying out of pocket and in american funds. not everyone is rich and not everyone is seeing dr. peterson ....some of us have to inform our own doctors about everything having to do with this disease.

    i am going to demand a free antibody test. of course, there won't be much i can do if they refuse lol
  9. ladybugmandy

    ladybugmandy Member

    fight....i don't think you have to worry much if you are taking the antibody test in 6-8 months....it will show if you have been exposed or not, regardless of which meds you are on.

    empower...to obtain an XMRV test kit, email VIP Dx.

  10. spacee

    spacee Member

    Anything that affects the immune systems to the good.

    You see, Dr. Klimas said that more things would be known and improved within a few months...she certainly didn't mean this but it is one thing we needed to know.

  11. AllWXRider

    AllWXRider New Member

    Like Dr. David Bell said in his last newsletter, there are more questions than there are answers.

    At the time, "LadyBugMandy" took the test, I'll bet it wasn't known that it could be affected by meds.


    Information on doing the blood tests can be found at www.vipdx.com/press (order the XAND - XMRV screen by PCR with virus culture confirmation: Test Code XAND).

    The cost is $650, and the profits from the test will help support the Whittemore Peterson Institute (WPI)—which sponsored the XMRV study and is playing an outstanding role in CFS advocacy.

    The testing will not immediately effect most people’s treatment and it is not clear if insurance will cover it yet, so it is OK for those who can’t afford the testing to wait (you will benefit by others moving the whole field forward). For those who have doctors, insurance companies, or family that are skeptical about their illness, this offers another reason to do testing. Do BOTH tests in the panel though, as one test being negative does not mean the infection is not there. You don't need the grief of a "false negative" test.

    A negative panel does not mean you don't have the illness--so don't panic if your test is negative. We'll discuss test interpretation over time as we have more experience with the results

  12. consuegra

    consuegra New Member

    It is my understanding that the antibody testing for XMRV will be available sometime in mid-February. Maybe Mikovits will give us specific information about this.

  13. ladybugmandy

    ladybugmandy Member

    the VIP lab told me 6 - 8 months for antibody testing!
  14. fight4acure

    fight4acure Member

    Thank you for the info! I'll see if my doc has a test.

    Fight :)
  15. skeptik2

    skeptik2 Member

  16. ladybugmandy

    ladybugmandy Member

    BDT...hi hon....yes i am excited and scared at the same time. i am fully prepared for a false negative result. i still think i will test positive when the antibody test comes out if i dont now.

    i don't think i can wait much longer so i might find a way to take AZT under the care of my old american doctor even if i am negative now. this would really suck though, since i would have to pay out of pocket for the meds and doctor's consults.

    nothing we can do but hope....:-/