Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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My doc offered to put me on Raltegravir

Discussion in 'XMRV Testing, Treatment and Transmission' started by SunnyGal, May 10, 2010.

  1. SunnyGal

    SunnyGal Senior Member

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    I just got a call from my doctor's office and they said he wanted to know what I thought about going on Raltegravir. I'm not thinking clear enough to remember what I've read about this so far. Is this one of those things you wouldn't want to take by itself due to the possibility of XMRV developing drug resistance? If anyone can chime in with thoughts and info I'd appreciate it.

    Thanks much, Sunny
     
  2. SunnyGal

    SunnyGal Senior Member

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    Thanks, Sue. My doc doesn't seem inclined to use AZT but he might if I pushed for it. I'm just not sure I'm at the point where I'd want to do it yet. Raltegravir doesn't sound as bad but I agree that 2 drugs sounds like a safer way to go.

    Thanks for the suggestion of emailing Dr. M. I think I'll definitely do that. I'll share if I hear back from her.

    Sunny
     
  3. subtr4ct

    subtr4ct Senior Member

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    Hi SunnyGal: just a follow up to what ladybugmandy was relaying... Dr. Deckoff-Jones hypothesizes that Raltegravir may be "such a potent inhibitor of XMRV integrase that there is a build-up of unintegrated DNA in the cell cytoplasm. DNA in the cytoplasm could activate production of interferons and thus, a resultant inflammatory response." She further indicates that "It may be that raltegravir requires reduction of viral load before adding." Incidentally, she indicates that she "would be happy to share with any physician willing to consider treating" (link). So you might have your doctor call her for guidance.
     
  4. Rrrr

    Rrrr Senior Member

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    judy m is back from prague.

    be careful what you post publicly re: her responses. when i asked her about azt (weeks ago) she gave me an answer but ask for it not to be posted publicly.
     
  5. acer2000

    acer2000 Senior Member

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    Since nobody has done a clinical trial of XMRV positive patients on Isentress (Raltegravir), there aren't any sure answers to your questions. We only have a study that shows that in a test tube both AZT and Raltegravir inhibit XMRV replication. And then we have a few anecdotal reports of people who have taken them. There is no data on resistance as far as I know... only speculation.
     
  6. SunnyGal

    SunnyGal Senior Member

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    Thanks, subtr4ct. I'll give the info to my doc about Dr. Deckoff-Jones. Seems like it would be a good thing for my doc to talk with someone who has used these meds already.

    Rrrr, I did hear back from Judy and she did ask me not to post the info publicly.

    acer2000, yes, it's all speculation and experimentation at this point. I'm not too inclined to be my doctor's first patient to try this, but I thought I'd look at it before just blatantly ruling it out.

    Sue, thanks for that info about them not seeing any effective resistance so far in vitro. I hope you're starting to feel better again. I'm looking forward to some encouraging updates from you. :)

    Sunny
     
  7. cfs since 1998

    cfs since 1998

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    Congratulations and good luck. I am surprised at how many are starting these drugs already, but I am glad there are still some open minded doctors out there.

    I am a little bit confused, you said AZT and Ral were nauseating but you haven't started them yet? Or did you take them in the past?

    Honestly the side effects of tenofovir look the worst to me.

    With regard to this topic in general, I am still concerned about resistance. What if we actually have more than one retrovirus? Like the Elaine DeFreitas virus? Does anyone know how long it takes for HIV to become resistance to raltegravir? And if anyone can private message me Dr. Mikovits personal opinions on AZT or related topics I would appreciate it. I won't tell anyone :)
     
  8. Patience

    Patience Guest

    Dr. Mikovits is a researcher I love the WPI and would never want to affect Dr. Mikovits from being able to do her very important work. She is not a doctor so my questions are to to my ID doc only. Yes I was on both .
     
  9. Patience

    Patience Guest

    I also wanted to say My ID doc said I'm not waiting. I know what retroviruses are and I know what they cause. I read the Science paper and it was as good as the HIV paper. The other studies where they aren't finding it is not going tostop me from treating my patients. I've been around since the GRID crisis and my patients are sick . I'm treating them period . I know this doctor is speaking to his/her colleagues right now telling them the same. ID docs get it. At least mine does. He/She knows how sick I am and wants to help his most serious patients from getting lymphomas abd rare cancers. I an highly susceptible 3 family members with very very rare lymphomas all different all non hodgkins.
     
  10. subtr4ct

    subtr4ct Senior Member

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    retrovirus mutation and resistance -- how informative are in vitro studies?

    This gets me to wondering... With HIV and HTLV, do the phenomena of mutation and resistance in vivo correspond well to the in vitro experience? Stated differently, if they do watch XMRV in test tubes for a few months, and resistance does not develop, can we infer that monotherapy is safe? Or are animal studies really needed for proper inference?
     
  11. Woody

    Woody

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    I agree 100%. These types of matters need to go through you medical professional. Any private infomation gleaned from the WPI needs to stay private, as well as off these boards for the good of our community and the WPI. I'm open for freedom of choice as long as the person walks in with eyes wide open, and am glad some MD's agree to help us in our plight. Maybe that's what it will take to find a cure for others as our government sits on their hands.

    BTW, pardon my ignorance, or brainfog, what is an ID doc?
     
  12. Rrrr

    Rrrr Senior Member

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    ID is infectious disease.

    and patience doctor sounds like a dream!!
     
  13. omerbasket

    omerbasket Senior Member

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    People, is it just me here, or does the message from "cfs since 1988" contained a quote from "Patience" that was never written (and "Patience" has only 2 posts on this forum, and they are both in the second page, whereas the quote is in the first page)?

    And patience, you said:
    You spoke about YOUR doctor... So why "He/She"?

    My questions should not be seen as personal at all! I have no bad intention and I think you would be able to answer in a way that would make sense to me...

    Now, regarding telling what Dr. Mikovits said: You should not do that, and definitley not on this board (And I think doing this in a private message is also a mistake, since you know, when one people tells the other it might pretty quickly stop being a secret. And I have a great scene from seinfeld about this to quote for you:
    By the way, in this chapter Kramer goes to the "AIDS walk", so it's also relevant in some way...).

    Anyway, I think that Dr. Mikovits is an incredible person, and she shows it here once again. If she has something to lose has that information she gave at least to two of you have gone public - and she still gave you this information - That means she just really really care for us.
     
  14. cfs since 1998

    cfs since 1998

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    "Never written"? Do you think I would make up a quote? The quoted post appears to have been deleted.

    Really, well I could email Dr. Mikovits herself and ask her, but why do that and waste her time when someone else already has the answer she gave? According to Rrr, Dr. Mikovits "asked for it not to be posted publicly" not "asked not to tell anyone."
     
  15. omerbasket

    omerbasket Senior Member

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    First of all, "cfs since 1998", I want to say again: This was not intended by anyway to be a personal attack. I did not think that you made that up, especially not when "Patience" first message on these forums came after your quote. I just didn't understand what happened here and wanted someone to explain it to me. Again, nothing personal at all.

    Now, about Dr. Mikovits's information - I don't know if she meant that it just have to not pe posted publicly. You know - let's say 10 people would get that information in a private message, and every one of these people would say it to just 2 people. Now you have 30 people that knows that. Can you gurantee to none of these people is a liar? And let's say there is no liar there (which is a stronger possibility in my opinion). Can you gurantee that every one of these people would know that this message should not be posted publicly? He might post it publicly without even knowing that there is a problem with doing that!
    Therefore, I think that people who were given some secret information by Dr. Mikovits should ask her if she agrees that they would send this information in private messages to people who want that. I really really think that after what Dr. Mikovits has done for us we really HAVE TO be careful in order not to harm her work (which, by the way, would, at the end, harm us...).
     

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