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Antiretroviral Trial

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

  1. Daffodil

    Daffodil Senior Member

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    thanks acer.

    i cant get anything intravenous. they wont pay for it here. and ARV's dont work on HTLV1-induced HAM/TSP. cancer treatments are different..i am sure they would help but i cannot get them until i actually get cancer!

    and i cannot wait another 5 yrs for treatment. my heart is going to give out and my brain is so swollen i am sure i will get cancer soon.

    i wish the researchers would tell it like it is instead of saying that there is hope and that we should hang in there. they should tell us that the people who have had this a long time and that are really sick probably won't make it. i'm sick of all the lies.

    and furthermore, what kind of idiots do a study on XMRV in macques without looking at the brain?! this is a NEURO disease. WTF. how can they not know anything about the neurobiology of this virus yet???

    and why are they not revealing what andrea whittemore is taking? PEOPLE ARE DYING!! i mean..actually DYING!!! this is MADNESS.

    this is like a holocaust.
  2. Charles555nc

    Charles555nc Senior Member

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    You ever considered a short trial of indinavir that "energyoverload" is trying for his/her xrmv? He/She seems to be having positive results with it.

    I am still a desperate person searching for a doctor who will prescribe antiretrovirals in North Carolina.

    Edit: You ever tried benadyrl for your inflammation. Im convinced xrmv and immunosupression causes an over reaction to just about everything. Like reconstution syndrome for aids patients, just one example.
  3. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Yes, Sue, at least at one time recently Cheney was suggesting the use of benadryl for inflammation when treating XMRV. He suggested it along with GcMAF but it was to offset the IRIS effect you often get treating a retrovirus. It is cheap enough and hopefully wouldn't be harmful.

    Best wishes,
    Sushi
  4. Daffodil

    Daffodil Senior Member

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    thanks guys. if the inflammation is being caused by XMRV already in the cells, what can benadryl do? i mean...i'd have to take it forever.

    charles....i didnt know anyone had good results with indinavir. thanks for letting me know.

    i wonder if, since i stopped azt for 6 weeks and then took a lower dose for weeks, that i might now be resistant to it.

    i wish i had the money to test my cytokines and NK cells more often
  5. alice1

    alice1 Senior Member

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    Hi Sue,I just read your message.Thankyou!!
    Klimas has recommened Acylovir. I started yesterday and I'll keep you posted.
    Why won't your doc prescribe Ampligen? Klimas told me that we have it here in Canada but it's on an emergency only list .what that means..who knows.
  6. Recovery Soon

    Recovery Soon Senior Member

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    I think the WPI is putting up a good front, and believe they are on to something, but are not as buttoned up as we think. I know Andrea looked better, but I would seriously doubt if they have a treatment at this point that they could tell you to take with any confidence.

    I know they are claiming to have treatment trials this coming year, but I think everything's a wing and a prayer at this point.
  7. Daffodil

    Daffodil Senior Member

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  8. Daffodil

    Daffodil Senior Member

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    http://onlinelibrary.wiley.com/doi/10.1111/j.1749-6632.1998.tb09620.x/abstract


    "At this stage of the infection, some of these neurochemical changes can be reversed by glutamate receptor antagonists, cytokine inhibitors, and anti-retroviral agents. In later stages of the infection, however, the infected mice develop irreversible neuronal loss, invasion of hematopoietic cells, and increased viral burden in the CNS. In addition, motor-neuron dysfunction (hindlimb paralysis, weakness, and ataxia) and seizures are sometimes observed during the late stages of infection."
  9. Daffodil

    Daffodil Senior Member

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    feeling better today
  10. illsince1977

    illsince1977 A shadow of my former self

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    Energyoverload hasn't posted any follow up on this thread http://forums.aboutmecfs.org/showthread.php?7564-My-Antiretroviral-Trial/page2 to his trial since Oct. 4. Is there somewhere else that I've overlooked where he says he's having positive results? The long silence makes it hard to know one way or another.
  11. undcvr

    undcvr Senior Member

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    Hi Daffodil wud u ever recommend just taking tenofovir alone for cfs ? It is the only drug I cud get a hold of. I knw usually it is taken together with something else.
    I have decided to just start taking it together with the Valcyte and c how things go.
  12. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Be very careful with this. ARVs are given in combo partly so you don't get resistance. This is not something that's advisable to try on your own cause the consequences of "getting it wrong" may not be reversible. You really need the help of a good doc when trying this stuff. Don't want to put you off, but we've all made mistakes we regretted by jumping into things.

    That said, Daffodil knows much more about all this than I do.

    Best wishes what ever course of treatment you decide on.
    Sushi
  13. Daffodil

    Daffodil Senior Member

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    im still feeling better, mind is clearing up a little more, as it was when i was first on the higher azt dose (300 BID). unfortunately, the same thing is happening with my heart..increasing chest discomfort radiating into my left arm...and tachycardia. the last time, when the tachycardia reached >100 BPM at rest, i stopped the AZT because i really felt as if i would go into cardiac arrest. i havent measured what it is now, i am scared to.

    with the AZT, my body feels like a toxic waste dump. i am always tired and just feel like i am taking poison. so now it looks like i will be screwed again. why is this happening??

    as soon as the holidays are over, i will ask my doctor for actos...dr. deckoff-jones had good experience with it..maybe that will help?

    i have spoken to one of the top ID docs in the world and even he could not tell me why this is happening. i dont think atenolol helped the last time either. my heart just kept getting worse and worse with the AZT! and RAL and TDF dont seem to be doing a thing!

    happy new year:)
    sue
    xoxo
  14. Daffodil

    Daffodil Senior Member

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    i was just reading..looks like progressive tachycardia can come before lactic acidosis on azt..but my doc was sure this wasnt happening.

    and now my liver enzymes will go up again, too :-/

    i dont know what i'm going to do now! ugh. why cant just 1 thing work out EVER
  15. undcvr

    undcvr Senior Member

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    I cant test for XMRV cos it is really expensive so I asked my doc to assume that I have it and put me on ARV for a just a month to see how that goes. He has not replied to me yet, its been about a week. He's usually good about replying so I know when no response means hes not so sure. On my own all I cud get was a script for Viread so I got myself a bottle and a half of it.
  16. Charles555nc

    Charles555nc Senior Member

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    Surprised your not trying coq10. Alot of people on cholestrol lowering drugs become deficient in coq10 and can become at risk for heart problems later on.

    I do 2 grams (yes grams) about every 2 or 3 weeks to help keep my heart in good condition. I am having heart symptoms even without being on arv's and it helps me.
  17. leaves

    leaves Senior Member

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    Carnitine is also recommended when you are on arv, there exist liquids with carnitine and q10. Nutricology sells supplements especially for heart health. X.
  18. Daffodil

    Daffodil Senior Member

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    thanks charles. i have a ton of vitamins here. the reason i stop taking them is because i just cannot keep up. because of the fog, i can barely remember the HIV meds. when i begin taking vitamins, i start forgetting the HIV meds.

    i will have to print out charts or something and start ticking off everything i take. this will become a full time job because of the fog.
  19. leaves

    leaves Senior Member

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    There exist supplement boxes, the vitaminstore sells them, then you can prepare your supplements for the whole week and can keep track if you took them.
  20. undcvr

    undcvr Senior Member

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    Daff, also maybe take something for liver support ? Some cheap and easily accessible like B vites, Milk Thistle and/or Andrographis ? The reason I say this is that I take them alot and they have worked for me. When I 1st started my Valcyte at the induction dose of 1800mg my doc was worried about bone marrow and white blood cell suppression. So I went out and took Shark Liver oil as I knew that it has been taken in cancer patients on chemo b4. On the weeks that followed going into the Valcyte treatment, my WBC actually went up ! And it has been at the highest it has ever been my entire life !

    Also I had no ASL/AST spill over. I definitely encourage some sort of liver support on the drugs you are taking to minimise their side effects.

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