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Jamie Deckoff-Jones MD Report On Meds

Discussion in 'XMRV Testing, Treatment and Transmission' started by shannah, May 3, 2010.

  1. redo

    redo Senior Member

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    It's funny that you should say that because I interpreted the thing about not experimenting with doses the other way. I see that it could be taken both ways, as not wanting to go up, or not wanting to go down. I took it as not wanting to go down.

    I normally use drugs.com to check on doses. They have this as their normal doses. If someone weighs over 30 kg, then it's 600 mg AZT (drugs.com link).
    [​IMG]

    And with Raltegravir it's "For the treatment of patients with HIV-1 infection, the dosage of Isentress is 400 mg administered orally, twice daily with or without food. (drugs.com link)"
     
  2. subtr4ct

    subtr4ct Senior Member

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    Hi redo: It appears I was indeed misinterpreting the doses. It also appears then that witchywoman on patientslikeme is on half the normal dose (300mg AZT total per day; link (registration required)), and ladybugmandy is using half the normal AZT dose (link). So we have some variation in doses being employed. Thanks for clearing that up!
     
  3. jdeckoffjones

    jdeckoffjones

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    I am taking standard doses for HIV. AZT 300mg BID and Raltegravir (Isentress) 400mg BID. The dose of tenofovir (Viread) is 300mg once daily. I have heard from people considering AZT once a day. I do not think this is a good idea. AZT has a short half-life. Taking it less often than necessary or at subtherapeutic doses may encourage resistance.

    Jamie Deckoff-Jones
     
  4. redo

    redo Senior Member

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    Hmm. Interesting. Please post if you find out why sue.
    When you take the 300 mg, do you take one 300 mg tablet or three 100 mg tablets?
     
  5. Advocate

    Advocate Senior Member

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    There is a paragraph about tenofovir buried in this article on anti-HIV vaginal gels published today.

    While awaiting his results in July, the U.S. National Institutes of Health is funding the next step: Researchers now are recruiting up to 5,000 healthy women in several African countries to use either vaginal tenofovir gel - daily rather than timed around intercourse - or daily pills containing the drug. It's the first comparison of the two strategies.

    What strikes me is that they are using daily doses of tenofovir on healthy women as a prophylactic.

    Advocate
     
  6. shannah

    shannah Senior Member

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    Update on antiretroviral treatment Friday, May 21, 2010 (Dr. Jones)

    http://treatingxmrv.blogspot.com/2010/05/update-on-antiretroviral-treatment.html

    So here we are... a little more than two months into our "clinical trial", N=2, of antiretroviral treatment for X+ cultures from VIP Dx. Anything that I mention about any more people than us came to me from email or hearsay, good sources though they may be.


    I started AZT alone and added raltegravir a week later. I experienced a significant reduction in malaise after a few weeks. At about six weeks, I had a surge of energy and reduction of many odious symptoms that I consider to be vasospastic in nature, as well as a reduction in air hunger which has been ever present for a long time. I tried to add tenofovir at eight weeks, probably because I felt that I had plateaued. Also that someone had to try it, and I don't feel particularly afraid of the drugs after where I've been. I took tenofovir for five days. From the third day on I experienced escalating neurological symptoms, so discontinued it. At the same time I received a couple of reports of people who had started raltegravir alone and became suddenly worse.


    My daughter started treatment a week after I did. She waited to see whether I was going to keel over right away:). I am not comfortable reporting about her except in the most general way. It is too much of an invasion of privacy. However, she also experienced a surge of energy at about six weeks into treatment, then an upsurge of symptoms I consider to be inflammatory and returned to about baseline. Since her inflammatory symptoms were continuing, she decided to stop raltegravir at the same time I did.


    We both stopped raltegravir for five days and both experienced an almost immediate worsening of symptoms, in my case all associated with vasospasm, in her case receptor insensitivity (hypoglycemic episodes), both worse than baseline. So a rebound...


    We both went back on raltegravir and those symptoms improved again very quickly, about a day. My daughter had four episodes in five days off raltegravir and has had one little one in almost two weeks back on. She started tenofovir five days ago and has so far had no problem with it. Her inflammatory symptoms persist, as do my neurological ones, but it's not even close to where we've been before. I continue to experience much less malaise than before starting. My energy is more potential than kinetic at the moment:), but sitting here writing this, I don't feel that sick.


    My feeling is that if I were starting now, I would probably start with AZT and tenofovir, wait a while and then try to add raltegravir. Raltegravir may turn out to be not the right drug. But for the moment, it's what we have. And nothing has ever dragged my illness around like raltegravir. I find that completely encouraging for the long haul. I would also like to make clear that the adverse experiences that we have had are not consistent with the very well known direct toxic effects of the drugs. I have heard a few reports of people who have tried AZT/raltegravir in combination and the response is mixed, but it doesn't seem that anyone has lost much for trying it so far. And it's not no response, which would actually be the worst response.


    My best guess is that AZT alone is not a good enough inhibitor of reverse transcriptase in crucial tissue reservoirs. When raltegravir is added there is potential for it to be too potent. There may be a build-up of unintegrated viral DNA. When the drug was stopped it allowed viral integration and invasion of new cells. X uses XPR1 receptors, present on every cell in the body, to invade new cells. XPR1 binding damage may be involved with disease expression. My daughter's most trackable symptom is hypoglycemia related to insulin insensitivity. Mine are vasospastic events in various organ systems. My guess is that they are ANS mediated. It may be due to affected enervation of distal blood vessels on the arterial side. Or it may be that there is a viral reservoir in smooth muscle or endothelial cells, vasospasm perhaps mediated by the direct effect of released inflammatory cytokines. Either fits with the episodic nature of the events.


    I am being contacted by people who are considering testing for X or starting treatment. It is obviously a self-selected group. But there is one commonality. All are well along on their long, sad journeys and are completely willing to be part of the experiment, hoping that others may benefit, especially all the young people who haven't had a chance at life yet. Maybe it's fitting that this is how it is happening given the decades of neglect. We'll figure it out for ourselves. Some of us simply don't have the time to wait.


    Posted by Jamie Deckoff-Jones MD at 6:26 PM
     
  7. SpecialK82

    SpecialK82 Senior Member

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    Thanks for posting, fascinating stuff :Retro smile:
     
  8. Advocate

    Advocate Senior Member

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    Hi Shannah,

    Dr. Deckoff-Jones' last paragraph is the answer to those who would "save" us from being too hopeful about XMRV. She is taking a chance with treatment, partly in the hope that other, younger people will benefit. Thank you Dr. Deckoff-Jones, and thank you Shannah, for posting.

    Advocate


     
  9. Doogle

    Doogle Senior Member

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  10. camas

    camas Senior Member

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  11. omerbasket

    omerbasket Senior Member

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    It's facsinating, to read Dr. Deckoff-Jones's reports on her and her daughter's status.
     
  12. Daffodil

    Daffodil Senior Member

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  13. omerbasket

    omerbasket Senior Member

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    Great post by her. I agree with everything that she said. It's easy to say "don't take it", when you are not the one who is suffering.
     
  14. jeffrez

    jeffrez Senior Member

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    I know Jamie - was treated by her when she was doing HBOT in MA - she is a highly intelligent person and is also medically trained, and I have to believe that she understands the risks of what she is doing as well as if not better than anyone. Not to imply that the risks are necessarily high, only that whatever they might be, she undoubtedly knows them and is capable of making an intelligent and informed decision.

    My own personal and decidedly *non*-medical opinion is that it's too early to be taking antiretrovirals based only on what we know (or really more accurately, don't know) about XMRV at this point. But I respect her decision to at least try if she is firmly convinced it's the right thing for her to do. We all know how incredibly frustrating it is living with this illness day after day, and I can definitely appreciate someone's desire to put an end to it ASAP.

    It just seems like we might know the status of the XMRV theory with significantly more certainty, one way or another, in another 3-6 months, if that, and perhaps it would at least make sense to wait until then. But I have no idea of her actual physical state, and that comment is only based on a hypothetical situation of someone who is maintaining some basic functionality day to day. If she is significantly more impaired, then that could be a different story. I'm sure she's factored all of that into her decision.
     
  15. V99

    V99 *****

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    Unless you are dying.
     
  16. jeffrez

    jeffrez Senior Member

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    Way to snip out one fragment of an entire post to mischaracterize my remarks.
     
  17. V99

    V99 *****

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    I said nothing about your remarks, I only added that, because for those who are severely sick and dying, the only option may be antiretrovirals.
     
  18. jeffrez

    jeffrez Senior Member

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    Well, you did say something about the remarks implicitly, just by selectively quoting them. And of course I accounted in my post for the option you mention. So really there was no need to "add" anything. Thanks anyway, though.
     
  19. V99

    V99 *****

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    No, you did not mention the issue of CFS causing death, so I added it.

    This is a forum, so one comment will spark off another comment.
     
  20. jeffrez

    jeffrez Senior Member

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    No one actually dies from CFS. They might die of complications from CFS, like heart failure, failure of other organs, or even suicide, but not from CFS itself. But that was covered in my remarks anyway, when I stated that if she were significantly more impaired my opinion might to that extent be different.

    I know you're emotionally upset over my remarks in the other thread regarding the Mikovits/XMRV article, but it doesn't really help anyone to nitpick in this one based on selective reading of my comments. So I think everyone would be better served at this point if you just let it go. Thanks.
     

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