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9th Invest in ME International ME Conference, 2014 - Part 1: Autoimmunity and ME
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Antiretroviral Trial

Discussion in 'XMRV Testing, Treatment and Transmission' started by Daffodil, May 29, 2010.

  1. Cloud

    Cloud Guest

    Dr Peterson uses the NKC9 Lytic Unit 30% test (VIP) which tests NK cell function/effectiveness.
  2. Rrrr

    Rrrr Senior Member

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    i see my doctor tomorrow and plan to discuss anti retrovirals. and hope to get the pre-treatment labs/blood work done tomorrow.

    does anyone have a good list of all the labs/blood work i should be requesting from my doctor?

    AND, DOES VIP TAKE MEDICARE? (i'll calll to ask)

    best,
    rrrr
  3. Daffodil

    Daffodil Senior Member

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    Rrrr...i think you can get a complete panel....CMCP or something its called?...at VIP

    sue
    xoxo
  4. Rrrr

    Rrrr Senior Member

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    thanks, sue. and they do take medicare. which covers 80% of the cost of the tests.
  5. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Does this mean that Medicare covers 80% of the XMRV tests too?

    Sushi
  6. Rrrr

    Rrrr Senior Member

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    last i talked to them (pre-assay test), medicare only covered $51 of the $400 test. things may be diff now....?
  7. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    I called today about the anti-body assay--they said may be available in 2 weeks, but didn't know the price.

    Sushi
  8. Daffodil

    Daffodil Senior Member

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    hi all. just wanted to report that the brain inflammation feels markedly less today. fatigue still intense. i am starting to sleep nights now but also sleep 1/2 the day. experiencing some mild asthma (this hasn't acted up in ages). nausea has been awful and has been affecting sleep and diet. today was a little better. may start anti-nausea med; will talk to doc.

    sue
    xoxo
  9. grant107

    grant107 Jean

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    Rrrr, I had the test done in Feb and asked the costs be paid by Medicare. I, also, gave my credit card number, in case it was not covered. So far my credit card has not been charged but I guess it could still happen.
    Jean
  10. cfs since 1998

    cfs since 1998 *****

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    Thanks for the update. How is your tachycardia?

    I think AZT causes nausea. Tenofovir also causes nausea. Did you end up starting tenofovir too?
  11. citybug

    citybug Senior Member

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    Is elastase a marker of inflammation? Those changes sound promising.
    Cheney says his patients start sleeping a lot with stem cells
    About the mulvs I just saw some scattered mentions here and watched a video that was taken down. I think it's an area where there will be more work later.
  12. Daffodil

    Daffodil Senior Member

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    cfs since.....yes i have been on tenofovir for 1 1/2 week now and it has made a difference. the nausea is definitely a problem but over the last 2 days, has lessened a little. the tachycardia is gone (i haven't actually been checking but i don't feel weird anymore).

    kdp...yes elastase is a marker of inflammation.


    sue
    xoxox
  13. energyoverload

    energyoverload

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    sue,

    i'm happy to hear your labs are improving! sorry to go off topic but have you tried methotrexate or rituximab infusions, dr klimas says rituximab maybe quite useful...i'm so desperate to get some sort of improvement - but i'm XMRV negative by culture :S i could go ARV route possibly, it seems like they are starting to get some slow improvements, but it will take a while to get well of course.

    thanks, stay strong

    jake
  14. Daffodil

    Daffodil Senior Member

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    hi energy....i cannot do anything IV...they wont do it here and i cannot afford it in the states. i have been negative for XMRV on 3 tests: PCR, culture, and the old serology, but i was so sick i didn't care.

    today, i felt the return of some energy.

    definitely slow improvement but a world of difference from the way i was (which was hell).

    sue
    xoxo
  15. rsagall

    rsagall

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    NeedyMeds

    All the information on pharmaceutical patient assistance programs plus hundreds of other programs is available for free at www.needymeds.org. Each workday over 13,000 people visit our site. We have all the applications on the website.

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    You don't have to pay to apply to these programs. Most are easy to apply to and respond quickly.

    We also offer a free drug discount card. No registration is required and anyone is eligible to use it. The average savings is 50% with occasional savings of up to 80% or even more.

    Rich Sagall, MD
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    NeedyMeds, Inc.
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    Gloucester, MA 01931
    richsagall@needymeds.org
    www.needymeds.org
  16. jimbob

    jimbob ME/CFS84-XMRV+

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    I can attest to needymeds, it worked for me. It was a simple process and was completed pretty quickly. Thank You rsagall. Jim
  17. Daffodil

    Daffodil Senior Member

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    continuing to improve slowly. have a little more energy, a little more brown power. there is no question the medicines are working.

    sue
    xoxo
  18. Tembo

    Tembo Australia

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    Thats so exciting Sue - Im so happy to hear that. I hope you go onwards and upwards from here!
  19. Tembo

    Tembo Australia

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    How is the nausea going Sue?:Retro smile:
  20. gu3vara

    gu3vara Senior Member

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    Great news Sue, seems like the rough start is finished and it's finally paying off :)

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