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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 pinky. you are so sweet! would love to talk to you more one day...

    i am really really sick right now. this damn azt, even at 200 mg BID, is like poison. everyday, as the stupid drug builds up in my body, i feel worse and worse and more and more toxic. this is awful!

    but the last time, it started to improve the CFS symptoms and i had some very good days...so i will stay on it...unless my heart starts acting weird again...which i guess it probably will.

    now i know what they mean by the cure being worse than the disease.

    i know i have said this before..but i really feel like the AZT is doing all the work. why am i bothering with the other drugs?

    i am thinking now for sure that i dont even have XMRV but some other polytropic thing...cuz i had my blood cultured twice (once by dr. lombardi personally), had PCR, and antibody tests...and they could NOT find any XMRV. but when this new MLV-related virus serology test came out, i was positive.

    WHY DONT THEY KNOW MORE AT THIS POINT????

    LOOK WHAT I HAVE BECOME. DOES ANYBODY UP THERE CARE!??????????????
  2. Daffodil

    Daffodil Senior Member

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    there are no words for this kind of suffering.

    it is as if my brain is about to leak out of my eyes, ears, and nose.

    looking back, it seems as i had a few semi-good days in which i had a small gimpse of the old me...after 6 months of these drugs.

    doesnt feel like its supposed to be like this if it's working.

    does anyone out there have any more info at all about any new developments? sure could use just a bit of hope...
  3. omerbasket

    omerbasket Senior Member

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    Sue, I don't understand why you're saying that. I'm not a scientist - and please, correct me if I'm wrong - but I think that there are no evidence suggesting that the drugs that work against XMRV will also work against the MLV-related viruses found in the NIH/FDA study. It is possible that they are supposed to work against them too - but it's also possible that they are not. As I said before - perhaps it would be wise for you to look for drugs that are known to inhibit polytropic MLVs in animals (and that are on the market for humans).
  4. citybug

    citybug Senior Member

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    I think AZT could create inflammation as it is working. But I personally would settle for tolerable, as you said it was before you restarted it. I would be for the slow inhibiting of the retrovirus. raltegravir was 14? times more effective against xmrv than hiv, and some people immune systems keep it in check. We've just had it so long that it takes time for our bodies to rebuild. I think the drugs work on hiv and xmrv because they are blocking the enzymes used various processes. The envelopes on the mulvs change, but the rest is pretty basic. I think we'd hear if these didn't work. The inflammation makes it really hard to tolerate. At least you know AZT is the problem now. Routing for you, whatever you're doing.
  5. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Im going to repeat myself again but in eastern europe cycloferon, an interferon inducer is used to help reduce inflammation caused by viruses and also IRIS from HIV meds, my own experience is that i have found it reduces that brain fog/ inflammation type feeling in my head, i still have periods of fatigue but not that sick/ill type of fatigue feeling i use to get, it makes life alot more bareable. I believe imunovir would probably do the same thing and Klimas is a big fan of this sort of stuff and she has alot of experience with HIV as well as cfs. Its cheap as chips and you will never know unless u have a go.

    cheers!!!


    c
  6. garcia

    garcia Aristocrat Extraordinaire

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    Imunovir definitely reduces inflammation. That is the main reason I'm taking it. Having said that, it is not all that strong.

    My experience with cycloferon so far is that it increases (not reduces) inflammation in me. I guess it depends how sick you are and what coinfections you have as to whether things will reduce or increase inflammation. Still I agree with heaps and think it is definitely worth trying.
  7. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    U find it increases inflammation, can i ask in what way? My problems are more down the herpes viruses like ebv and cmv, is this very different to yourself?

    cheers!!!

  8. garcia

    garcia Aristocrat Extraordinaire

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    Yes, my main coinfection is Chlamydia pneumoniae (Cpn). Whenever I take anything that boosts the immune system I get a whole lot of inflammation. I'm very different from people with just viral issues (before Cpn I was much much healthier).
  9. Daffodil

    Daffodil Senior Member

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    sorry i dont seem to take advice very well. i do appreciate it. its just that my doctor is unwilling to prescribe much else and i am too sick to look into things right now. i sometimes cannot even remember to take my HIV meds on time. just too foggy.

    can someone please tell me where to order cycloferon? is it expensive or would insurance cover it? is it liquid?

    the reason i thought the other MLV's would be inhibited by the same drugs is because someone at VIP told me so and maybe i heard it some place else, too. i dont know. i just dont know very foggy

    i think the non-foggy ppl will do better. how can anyone get brain function back completely when its this bad ...unless they do IV

    sorry i am depressing..just very very ill
  10. omerbasket

    omerbasket Senior Member

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    I don't remember seeing any studies on those PMRVs found in the NIH/FDA study, regarding drugs that work against them. Therefore, I assume that this person in VIP Dx told you that either as his opinion (might or might not be based on studies in animals, or on similarity to XMRV) or because he knows of studies done about drugs that inhibit those PMRVs that had not yet been published anywhere (not even unoficially). Or that for some reasons there are published studies regarding that matter and I don't know about them - but I think this is unlikely.
  11. Daffodil

    Daffodil Senior Member

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    yes you are right...the PMRV's havent even been sequenced yet.

    i am starting to feel a little better again. so i know i need the AZT for sure.

    i am sure you have read about "Ms. X" from the Deckoff-Jones blog who recovered in 4 months on Isentress and Raltegravir, after 12 years of CFS....WOW.

    this has to be all dependant on the strains one has...cuz i know i have no co-infections. i have been tested for everything one can think of, at the best labs. and i am not aware of any other medical conditions either.
  12. Daffodil

    Daffodil Senior Member

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    well i just asked one of the top retrovirologists in the world (if not THE top)...he said that absolutely the same drugs would work for the Lo/Alter viruses...if they actually have a virus.
  13. Rita

    Rita Senior Member

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    Heapreal said that in November 13
    hi tony,
    I got my last order from these guys http://www.drugspro.org/skin-problems/cycloferon.html there also a bit cheaper then pharmacy1010, i dont know what had happened to them as their site wont open. Let us know how u go, looking at its mechanisms it should help u with ross river as its used for many different viral infections. good luck with it. My friend that i have mentioned who has started cycloferon has also had ross river and doing well on it.
  14. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    pharmacy 1010 changed their website slightly, reason unknown http://www.pharmacy1010.ru/ cyclo is cheaper from drugspro which i have ordered and recieved 2 orders so far, but pharmacy1010 have some other interesting products for the immune system which i may trial/the human ginea pig downt the track which look good. Immunoglobulin interests me and there are some positive tests with this med for cfs but will keep persueing other things i have going before looking into these and talk it over with my doc.

    cheers!!!
  15. leaves

    leaves Senior Member

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    Hey Sue! How are you doing? have been missing your reports the last few days :) Hope you are well..
    I am thinking of starting ARV's myself... if only I knew a dr that is up for it :((

    xoxo
  16. Daffodil

    Daffodil Senior Member

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    hi leaves. thank you for asking. i am not too great since i lowered the azt dose. i think i just need more medicine in my brain but i guess nothing that works on xmrv gets up there other than azt.

    sorry i cannot remember...are you in the UK?

    sue
    xoxo
  17. leaves

    leaves Senior Member

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    Hey Sue.
    hmm it is really a shame that it takes so long to work...

    I am in the US, Boston area.

    Hang in there!
  18. omerbasket

    omerbasket Senior Member

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    Sue - that's a big jump ahead - but perhaps you might want to contact Chimerix and ask them about a possibility for you to participate in a clinical trial with their CMX157 (HexadecyloxypropylTenofovir), which showed very good results in vitro against XMRV. That is because they write the following:
    Ofcourse you have to be aware for a couple of things:
    1) It just "may" penetrate better the blood-brain barrier.
    2) It's a new drug that was tested only in one study (which I guess was a small one) in humans (although they say that it "was well tolerated and there were no laboratory, vital sign, electrocardiogram changes or adverse event trends attributable to drug").
    3) It is not proven that this, or any other drug, can inhibit XMRV in vivo, and also not proven that inhibiting it in vivo would cause an improvment regarding symptoms.
    4) I'm not a scientist, and I might be wrong regarding the "may penetrate better the blood-brain barrier".

    But, that is possibly an option too.
  19. Daffodil

    Daffodil Senior Member

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    hi omer. thanks:)

    i doubt they will have a clinical trial with XMRV and this drug for a long while, yet - and it definitely won't start in canada!

    basically, i just have to live in this hell until they have something new, and hope i dont get cancer, heart failure, or something like that.

    who knows? maybe the drugs i am on will kick in yet? although after 8 - 9 months, i am getting skeptical. i wonder if i am making it more and more resistant.

    i remain in denial so i can exist...but deep down...i think its going to be many many yrs before there is any help and i dont think i will ever get my mind back unless i find a way to do ampligen or something. this is so hard....getting my hopes up over and over, only to stay sick in the end.

    i think those who havent been sick long or dont have brain fog will fair best with the current meds.

    i try not to think about all the others going to work and dressing up and living life and being happy, but its always there. this is so unfair. so difficult.
  20. omerbasket

    omerbasket Senior Member

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    Hang in there, Sue. You know, even Nelson Mandela got out of prison after so long and became the president of South Africa. Sometimes things that are not expected do happen - and this is what happened with the finding about XMRV and ME/CFS. And now it is much more expected that you can get better, than it was expected before.

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