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!
The Pathway to Prevention (P2P) for ME/CFS: A Dangerous Process
Gabby Klein gives an overview of the P2P process, shedding light on the pitfalls with advice as to what we can do in protest ...
Discuss the article on the Forums.

XMRV Testing-FYI

Discussion in 'XMRV Testing, Treatment and Transmission' started by InvertedTree, Oct 9, 2009.

  1. citybug

    citybug Senior Member

    Messages:
    522
    Likes:
    36
    NY
    Nielk,
    Did Dr Enlander collect 4 vials for Dr. Kerr? I'd like to help with research, but can't do 4 vials.
    Also wonder if VIP keeps any of the blood sent for the research.
    Thanks,
    Kathy
  2. Rrrr

    Rrrr Senior Member

    Messages:
    1,397
    Likes:
    264
    test kit on its way, and will medicare pay?

    hi all,

    i have been on the VIP waiting list for a test kit for about 1 wk. anyway, i just got a call from VIP labs today and they told me they were sending me a kit in the next day or so and i should have it by friday. i did not tell them my doctor's name or anything. they did not ask. so, why not: i asked for 4 extra kits to give to friends or my doctor's office. spread the wealth, i figured! i have at least 4 cfs friends who may want it.

    i also asked about medicare covering this test, to both VIP's email contact and the VIP person who called me today via phone. this was their reply:

    1. phone reply:
    they have no idea if medicare will cover it. in fact, today is the first day they are sending to medicare a request to pay for the test for some patients. they said it can take medicare one month to several months to respond. so they'll know in one month to several months if medicare will cover these tests. and also, they said, a warning: medicare is weird in that it will sometimes pay for one patient and not another.

    2. email reply to the medicare question:
    They wrote me this... "We are using Medicare billable procedure codes (CPT); however, if Medicare feels that your diagnosis code (ICD code from your physician) does not warrant this type of testing, they will require a medical necessity letter from him. There are no guarantees that even with that Medicare will pay." the email was from this woman listed below

    Marguerite Ross, Director
    Marketing & Client Relations
    VIP Dx / RedLabs
    5625 Fox Ave - Rm 369
    Reno, NV 89506
    775-351-1890
    Fax: 775-682-8517
    Cell: 775-813-3319
    www.vipdx.com
  3. Rrrr

    Rrrr Senior Member

    Messages:
    1,397
    Likes:
    264
    test kit info

    i will post again the test kit info, just in case others want it... this is what they sent me the other day via email....

    Good Afternoon

    Below is some information that will be of help to you regarding the XMRV
    testing.

    It is with great pleasure that Viral Immune Pathology Diagnostics (VIP
    Dx) announces the introduction of its family of diagnostic tests for the
    Xenotropic Murine Leukemia Virus-like Virus for XMRV associated
    neurological disease (XAND).

    Test acceptance will commence on October 23rd, 2009. Please contact our
    Client Relations staff to arrange the shipment of test kits and
    acceptance of samples. Each XAND specimen must have an XAND acceptance
    code on the test requisition. The XAND acceptance code is assigned by
    our staff and will arrive on the test requisition in your specimen kit.
    Specimens sent without the appropriate acceptance code may result in the
    delay or inability to perform the diagnostic test. The diagnostic tests
    available for XAND* are as follows:

    XAND by PCR for XMRV active infection: Test Code XAND ($400)
    XAND1 by virus culture for XMRV latent infection: Test Code XND1 ($500)
    XAND2 by PCR for XMRV active infection and virus culture for latent
    infection: Test Code XND2 ($650)
    Coming Soon!
    XAND with Western Blot (reflexive) as confirmation of XMRV active
    infection
    XAND by serology: Serological assay for XMRV IgG antibodies will be
    available shortly. Samples requiring serological testing may be banked
    for future testing if requested.

    We are accepting XAND tests on Tuesdays and Fridays only due to the
    incubation period required for proper analysis. Therefore, you must
    have your blood drawn on Monday or Thursday and ship immediately back to
    us by priority overnight FedEx for receipt by us on Tuesday or Friday.

    For XAND testing you must use the coded test requisition provided with
    your kit. Refer to the updated specimen guidelines in the right column
    of the test requisition for proper blood draw.

    No special preparation is required for specimens; ship specimens at
    ambient (room) temperature. Specimens must be received within 24 hours
    for proper analysis. Collection and shipping instructions are included
    in each kit along with all required specimen tubes. The return clinical
    envelope and overnight airbill are also included.

    VIP Dx is a fee-for-service specialty clinical laboratory. Fees are
    due at the time of service. VIP Dx will continue to provide patients
    with a complete statement with all ICD and CPT codes so that they can
    seek reimbursement from their own insurance company.

    VIP Dx will bill Medicare as long as the patient provides a valid copy
    of their Medicare card and any supplemental insurance and the patient
    signs the ABN (Advanced Beneficiary Notice) located on the reverse side
    of the test requisition. Medicare patients will be responsible for any
    fees not covered by Medicare and supplemental insurance.

    VIP Dx is committed to providing quality clinically relevant tests,
    accurate, timely results and excellent customer service to aide the
    physician in the diagnosing and managing chronic viral and immune
    mediated diseases.

    We are very excited about our latest technology and new XAND test menu.
    To order you test kit and check on test availability, please call Client
    Relations. Our Client Relations desk is open from 9:00 a.m. - 5:00 p.m.
    Monday - Friday PST. You can also e-mail your request to
    info@vipdx.com

    You are invited to visit us at our website at www.vipdx.com.

    On behalf of the VIP Dx team, we thank you for your continued support.


    Marguerite Ross, Director
    Marketing & Client Relations
    VIP Dx / RedLabs
    5625 Fox Ave - Rm 369
    Reno, NV 89506
    775-351-1890
    Fax: 775-682-8517
    Cell: 775-813-3319
    www.vipdx.com
  4. Rrrr

    Rrrr Senior Member

    Messages:
    1,397
    Likes:
    264
    more on medicare covering xmrv test

    FROM VIP LABS:

    The CPT code (procedure code) is 87798.
    The Dx (diagnostic ICD 9) code comes from your physician.

    Marguerite Ross, Director
    Marketing & Client Relations
    VIP Dx / RedLabs
    5625 Fox Ave - Rm 369
    Reno, NV 89506
    775-351-1890
    Fax: 775-682-8517
    Cell: 775-813-3319
    www.vipdx.com
  5. Dan

    Dan

    Messages:
    26
    Likes:
    0
    Perth Australia/NC USA
    My sentiments exactly :)
  6. Aftermath

    Aftermath Guest

    What to Do With a Positive Test?

    All of us can't wait for an end to this.

    I just don't see what you plan to do right now if you get a positive test? Have you identified a clinical trial with anti-retrovirals that you are considering?

    About.com just published an excellent article about why we should consider waiting on testing.

    Personally, I am waiting until the first of the year when some things shake out.
  7. Scavo86

    Scavo86 Senior Member

    Messages:
    129
    Likes:
    43
    England
    I think I am with Aftermath on this one, after years of suffering for most of us waiting a few more months is a prudent thing to do. The tests will become more and more refined and the treatment options increasingly wide and varied. It's easy to get carried away and snatch at hope but with false dawns before no matter how excited one gets (and believe me, I am about as excited as they come with regards to all this XMRV shiz) I think it pays to keep one's thinking as objective as is possible in the situation.
  8. Advocate

    Advocate Senior Member

    Messages:
    506
    Likes:
    14
    U.S.A.
    Levi, those are all good reasons.
  9. dana

    dana

    Messages:
    5
    Likes:
    0
    australia
    does anyone who is taking the test know hoe long it will take to get your results? just curious thats all!
  10. If it gets there in 24hrs it's stable, so no need for ice pack. (Overnight FEDEX).

    Longer than 24hrs and I guess it needs to be frozen, but that's costly and needs a lab.
  11. Andrew

    Andrew Senior Member

    Messages:
    1,962
    Likes:
    1,229
    Los Angeles, USA
    FWIW, my blood test got messed up because Nov. 30 was a Nevada holiday and my blood tests could not be delivered on time. VIPDx contacted me and said I needed to redraw and resend blood for all my tests except the XMRV tests. She told me that the blood for XMRV needs to sit for awhile anyway, so the delay did not hurt. I wondered about the temperature, but I'm assuming they know what they are doing.
  12. Sushi

    Sushi Moderator and Senior Member Albuquerque

    Messages:
    6,919
    Likes:
    5,776
    Albuquerque
    Hi Andrew,

    There is a documented thing called splanchic pooling (I get it)--basically venous blood pooling in the abdomen. It is associated with OI. Maybe the blood draw helps with this? My doc always suggested that I wear an abdominal binder (i.e. girdle--ugh!) to prevent this to some degree.

    Sushi
  13. People with Dysautonomia and POTS can get splanchic pooling when they eat - it's awful. (Can't feel middle of body often and feel super faint).

    Any blood loss in a Dysautonomic or someone with Vaso Vagal Syncope will only make you feel ghastly.

    It's a shame we all need blood, we could have endless blood tests (funds allowing) and probably be diagnosed with issues that could be addressed and lead to a better quality of life.
  14. Frank

    Frank Senior Member

    Messages:
    848
    Likes:
    7
    Europe
    Question: Is it the not yet available antibody test at VIP Dx the same as the one that gave the 95% return value in the study?
  15. JMK

    JMK

    Messages:
    27
    Likes:
    0
    Levi-I called VIP a few days ago to order the XAND2 kit. They put me on a waiting list (6 weeks). I asked them how long it would take to receive results once they receive the blood and they told me 2 weeks.
  16. Liberty

    Liberty Guest

    Hi Everyone,
    I am new to this website and forum so I hope I am posting correctly.
    I am from Ontario, Canada and had CFS/ME for 28 years. Do you know if the XMRV test is available in Ontario yet?

    Thank you, Liberty
  17. firbopt1997

    firbopt1997 Guest

    Liberty- VIP will ship a kit to any where in Canada or the United States. Just give them a call or email them and they will put you on the waiting list.
  18. firbopt1997

    firbopt1997 Guest

    More Testing Info From VIP

    I spoke to VIP today regarding my XMRV results and was told that the XMRV is is a slow growing virus and is difficulty to detect in the DNA. VIP is confirming all results before they send them out as final. They are fine tuning the test to produce accurate and timely results. They are in the first round of testing and will get better within the next 30 days. So if anyone is still waiting for their results that is why. Just thought everone should know.
  19. dmarie4301

    dmarie4301 Guest

    Is the NKCP test available mainstream medicine??? Or a specialized test only?? I was going to ask my doctor to run this test and was wondering if other labs, local labs, know how to do this test. Ive had lymphocytes, white cell counts, etc done before (I guess thats how mainstream checks our immune system) and all was okay. So, is the NKCP test outside mainstream medicine then??? (I have a lab requisition form in front of me, cuz Im going in for a thryroid panel, but I dont see anything on there for the immune system...amazingly HIV antibody is on it!)

    Thanks for any help with this.
  20. dmarie4301

    dmarie4301 Guest

    In response to this quote, I dont get how they came up with high positives with the study, but cant do it with our blood from the community. Didnt they find 67% in the DNA??? Why the trouble now?? I dont understand. If they could do it in the study, why not with us??

    Comments on this thot are very welcome as well as my thots on NKCP, cuz maybe I need to know if I have other markers for immune dysfunction.

    Also, Mikovits said they found XMRV in people without the RNaseL broken link, so getting that test is probably not advisable, since you could have XMRV even tho that the RNaseL pathway is working fine.....another thot.

See more popular forum discussions.

Share This Page