Isentress for XMRV

Discussion in 'Fibromyalgia Main Forum' started by ladybugmandy, Nov 25, 2009.

  1. ladybugmandy

    ladybugmandy Member

    hi all. here is another excellent blog to follow...written by a phD in cellular and molecular biology:

    i asked a question of one of the professors on the virology blog (whose link i posted earlier) and this is the response i received:

    "There has been a lot of talk in the scientific community this week about XMRV is Cleveland, and I spoke to a colleague that was in attendance. A considerable amount of talk centered around compounds to target XMRV - Isentress was one of the big ones, in addition to other integrase inhibitors. The only concern I have about AZT is the side effects - finding a doctor that will prescribe it, and monitor your bloodwork. You will also have to pay out-of-pocket, as provincial drug plans will not cover it. AZT has the advantage in terms of cost - about the cost of a large cup of coffee. Isentress will cost far more -$16 a day, but has very few side effects, and will bring viral load down faster. It might not be long before the natural health food stores start carrying chicoric acid - a natural integrase inhibitor from Echinacea, the only downside is that it cannot enter cells as readily as Isentress. There is a small risk that Isentress could cause autoimmunity in humans like it did with mice in the form of a lupus like illness, but this was only observed in mice with a certain genetic succeptibility."
  2. SpecialK82

    SpecialK82 New Member

    Thanks for posting, fascinating!

    I wonder in the chicoric acid also has potential to cause lupus (or lupus-like illness)...
  3. AuntTammie

    AuntTammie New Member

    I'm so glad to see that you are still looking into new possibilities!

    This post is very interesting, too....I wonder if it is possible to test for the genetic susceptibility before trying this kind of treatment
  4. ladybugmandy

    ladybugmandy Member

    i keep oscillating between suicide plans and research. the problem is my sister. i can't f--king leave when she needs me so badly. this really sucks. i am stuck stuck stuck.

    isentress doesnt sound any better than AZT. its new...not many studies done...and can really kick off autoimmunity.

    scary stuff. there doesnt seem to be anything good coming in the near future.

    wonder if any of the other integrase inhibitors are less dangerous.

    they had better have something more concrete for us in a few months.

    i wonder what they will be giving the twins on dateline. they have not yet been treated for the XMRV but the mother is working with an HIV researcher i think.

  5. spacee

    spacee Member

    A Rheumatologist at JohnsHopkins Hospital noticed that every
    lupus patient she admitted was taking Echinaecea (?). I was taking it to. My ana went to 1280. When I quit taking it, it went to zero but didn't stay there (possible lab error?) now back to 1280.

    And I cannot afford $16 a day anyway.

  6. AuntTammie

    AuntTammie New Member

    Well, I gotta say that I am truly happy that your sister needs you so badly.......sorry...... I know that you are in a really rotten place and I know that I have said this before, but I do really understand. I have been there (not for exactly the same reasons, but very similar ones), and I do not want you to have to suffer. I wish I could help, but I also do not want you to choose suicide (and I know from so many previous posts that there are many others here who feel the same). We may not know you in person, but we do love you. That said, I still would never judge you or anything if you did wind up leaving us......but it would make me very sad.

    I do believe, too, that there will be more treatment possibilities coming sooner than you think. (I know, at this point, yesterday would not be soon enough....but I do still hope and pray that you can hang on.)
  7. ladybugmandy

    ladybugmandy Member

    aunt tammie..thank you for caring. i just wish all these nice people i met..i could have met under better circumstances. i hope that some of us remain friends even if we get well.

    spacee..that is incredible re: echinacea.

    for some reason, AZT doesnt scare me as much as newer drugs. at least they know all the side effects to watch for and there wouldn't be any surprises....unless our livers reject it or something.

    i know a lady who was one of the 10 original patients to receive ampligen. she knows peterson well and has been his patient for 14 yrs. she is waiting for her XMRV results. i wonder what peterson will tell her to take, if anything. she will know her results on dec 8th i think.

    as soon as anyone tells me that peterson has suggested a med, and it is not an IV med, i will do my best to get it.

  8. AuntTammie

    AuntTammie New Member

    I know what you mean about meeting under different circumstances, but maybe, just maybe some day we will get well and some of us will not only remain friends, but might even meet in person......wouldn't it be so cool to be healthy enough for that to be a possibility?

    I know it sounds like it's pretty far fetched at this point, but we just don't know.....the way things are going, it is not completely out of the realm of possibilities.
  9. SpiroSpero

    SpiroSpero New Member

    for the links ladybug! I appreciate them and I'm so thankful that scientific experienced people write comments there. I hope that they find some working antiviral soon.

    Would be good to know how the LDN works btw and if it helps against XMRV.
  10. TigerLilea

    TigerLilea Active Member

    I read that Isentress costs $1,100 per month. If it does, then I certainly won't be able to afford this drug if it turns out to be effective for CFS.
  11. winsomme

    winsomme New Member

    i thought i remember reading that XMRV might respond to the antiviral properties of interferon beta.

    also, i thought i read that that interferon beta down regulates a part of the immune system that activates XMRV (i believe it was Nuclear Factor Kappa Beta - NFKB).

    It also is a medication with a well known profile in its use as a treatment for MS.

    Is there a way to ask this DR who mentioned the antiretroviral about interferon beta?

    i would be very curious to know if that is something they are considering...
  12. winsomme

    winsomme New Member

    Interferon-? treatment in multiple sclerosis attenuates inflammatory gene expression through inducible activity of the phosphatase SHP-1

    George P. Christophia, b, Michael Panosa, Chad A. Hudsona, b, Chriso Tsikkoua, Cornelia Mihaia, Luis J. Mejicoa, Burk Jubelta, b and Paul T. Massaa, b, ,

    aDepartment of Neurology, SUNY Upstate Medical University, Syracuse NY, USA

    bDepartment of Microbiology and Immunology, SUNY Upstate Medical University, Syracuse NY, USA

    Received 6 May 2009; accepted 29 May 2009. Available online 25 June 2009.

    Interferon-? is a current treatment for multiple sclerosis (MS). Interferon-? is thought to exert its therapeutic effects on MS by down-modulating the immune response by multiple potential pathways. Here, we document that treatment of MS patients with interferon ?-1a (Rebif) results in a significant increase in the levels and function of the protein tyrosine phosphatase SHP-1 in PBMCs. SHP-1 is a crucial negative regulator of cytokine signaling, inflammatory gene expression, and CNS demyelination as evidenced in mice deficient in SHP-1. In order to examine the functional significance of SHP-1 induction in MS PBMCs, we analyzed the activity of proinflammatory signaling molecules STAT1, STAT6, and NF-?B, which are known SHP-1 targets. Interferon-? treatment in vivo resulted in decreased NF-?B and STAT6 activation and increased STAT1 activation. Further analysis in vitro showed that cultured PBMCs of MS patients and normal subjects had a significant SHP-1 induction following interferon-? treatment that correlated with decreased NF-?B and STAT6 activation. Most importantly, experimental depletion of SHP-1 in cultured PBMCs abolished the anti-inflammatory effects of interferon-? treatment, indicating that SHP-1 is a predominant mediator of interferon-? activity. In conclusion, interferon-? treatment upregulates SHP-1 expression resulting in decreased transcription factor activation and inflammatory gene expression important in MS pathogenesis.
  13. AuntTammie

    AuntTammie New Member

    : ) I like your dream
  14. ladybugmandy

    ladybugmandy Member

    i am virtually certain that the first drug they will recommend will be AZT.

    if it is another one, there has to be a way to get it. you can apply for special consideration....also, i would not be surprised if the drug company that makes it will agree to provide it free for CFS patients, like roche did with valcyte in the US.

    i lose my drug plan in february. i am also in the same boat. i am hoping to appeal to the government or something to get them to pay for it.

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