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HTLV-1 Reservoir treatment!

Discussion in 'XMRV Testing, Treatment and Transmission' started by Daffodil, Dec 24, 2010.

  1. Daffodil

    Daffodil Senior Member

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    Little Bluestem and Enid like this.
  2. George

    George waitin' fer rabbits

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    This could be very important news for us in the future. Thanks for posting this Daffodil!

  3. Daffodil

    Daffodil Senior Member

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    i was in contact with dr. luc willems months ago...he was the one conducting this trial i thought, so i don't know why he is not mentioned. i really didn't think it would work but i am glad the results are good. hope it works in humans and that it actually prevents HAM/TSP.

    i think they are conducting a larger trial in rio de janeiro next.
  4. tonydewitt

    tonydewitt

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    HTLVhelp.Com

    Thanks for posting good news about treatment for HTLV reservoir - I didn't think that anyone cared about enough to perform research! And I like the "combination therapy" approach of using a HDAC inhibitor (valpoic acid) together with an anti-retroviral drug (AZT) - doing this is avant garde for even HIV therapy, since it's only been talked about in the field of HIV research. Like HDAC inhibitors (which awaken dormantly infected reservoir cells), demethylating agents such as azacytidine (Vidaza) also awaken dormantly infected cells - presumably the demethylating effects enables the cells' crucial silenced supressor genes. Like anti-retroviral drugs (which disrupt viral production), demethylating agents such as azacytidine (Vidaza) also serve to disrupt viral production by their incorporation into RNA & DNA - Dr. Louis Mansky's lab published a paper demonstrating such "lethal mutagenisis" of HIV by azacytidine. A clinical trial of azacytidine (Vidaza) to treat (and possibly cure) HTLV infecton seems warranted - patient in Greece was cleared of the virus after 8 months on it. Perhaps adopting the triple combination therapy approach of a HDAC inhibitor + a demethylating agent + an anti-retroviral would be the ultimate treatment for HTLV, ushering in the dawn of a new era for eradicating and curing retroviruses. And if it works for HTLV, it could work for HIV as well - imagine that - a treatment not only for ME/CFS caused by HTLV, but also for HIV itself! Where are the scientists when you need them?
  5. Daffodil

    Daffodil Senior Member

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    wait a minute..a patient was CLEARED of the virus?????

    they have tried a lot of combination approaches with HIV in small trials and it hasn't worked yet.

    maybe IL-7 will be the key.

    can you please link me to the article about the greek patient??

    thank you!
  6. Daffodil

    Daffodil Senior Member

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    so i read the article:

    http://www.virologyj.com/content/9/1/1


    it appears that Vidaza caused HTLV-1 PCR to become negative but i did not find any report of the antibody test becoming negative. do they know for certain if the patient actually eradicated the virus?

    if so, this is pretty amazing indeed!

    i emailed one of the authors to ask....
  7. anciendaze

    anciendaze Senior Member

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    I want to make sure that people know we are talking about valproic acid, which is used in treatment of epilepsy, bipolar illness, schizophrenia and sometimes even major depressive disorders. You may have heard of it under the trade name Depakote. It is commonly described as a mood stabilizer, and any effect on infectious disease has generally been discounted. I was taking this after being hospitalized for a suspected Gran Mal seizure, but a neurologist who examined me said, "Nah! You don't have a seizure disorder," and it was discontinued.

    As a side light on understanding of HTLV-1 infection, it took a while to get anyone to officially admit there were asymptomatic carriers of HTLV-1. We now learn that 97% are asymptomatic. (Only 3% develop HAM/TSP or ATLL.) What does this tell you about estimated incidence of infection and control of same?
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  8. tonydewitt

    tonydewitt

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    Daffodil,

    A few things to consider about the HTLV in general, and the Greek patient (I see that you found the link):

    (1) Antibody serology is not reliable (see Mr. Sadowsky's comments on TheBody site).
    (2) The doctors for the Greek patient used PCR to determine HTLV infectivity, along with symptoms of HTLV infection.
    (3) Having not seen the HTLV PCR return to positive for a year after treatment, the doctors concluded that HTLV was eradicated from the patient.
    (4) The doctors also did a bone marrow transplant after the azacytidine treatment, which may have affected the outcome, but they didn't put emphasis on that for some reason. However, it's worth noting that bone marrow transplants do have an affect on retroviruses (for reasons unknown).
    (5) Emailing the doctors to ask if Vidaza actually cleared the virus sounds like a good idea, but I doubt that the doctors would declare it a cure, since then everyone with HTLV would want to be treated with Vidaza (wink). But of course I hope that it is a cure for HTLV, and I hope that its method of action also works against HIV. I'd rather take 8 months of Vidaza than be miserable with HTLV for the rest of my life.

    Anciendaze - yes, valproic acid is used for seizures, but also belongs to a group called Histone deacetylase inhibitors (HDAC inhibitors), which has as its members many compounds that are being used recently for cancer, inflammation, and viral treatments.
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  9. Daffodil

    Daffodil Senior Member

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    thanks tony. well if they did a bone marrow tx...that changes things! they have cleared HTLV-1 with a bone marrow transplant alone before, but they didnt expect for it to happen.

    i would love to see some people with HAM/TSP take GcMAF. It's gotta be happening somewhere....


    xxox
  10. tonydewitt

    tonydewitt

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    You're welcome Daffodil - the authors of the article give all of the credit to Azacytidine for the clearance of HTLV, and none of the credit to the bone marrow transplant. Did you receive a reply to your e-mail to them? When I wrote them a few months ago, they stood by their claim that "the virus was eradicated before stem cell transplantation" (actual e-mail quote). They claim that they weren't trying to cure HTLV in the patient, just trying to treat MDS (which is cause by HTLV lol), in an attempt to stop the MDS from progressing to AML (and death). All I know is that a guy in Greece was cured of HTLV, and 20 million people worldwide (including half a million Americans) want to be cured too! Is this another example of doctors not realizing that eradicating a pathogen also resolves the suffering related to that pathogen? A sterilizing cure is the way to go - if Hepatitis C can be cleared, so can HTLV.
  11. anciendaze

    anciendaze Senior Member

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    By chance I just posted something relevant to this discussion elsewhere. It concerns the time a retroviral infection can persist in humans before it becomes a fatal progressive disease. The long latency of HTLV-1 scares me, from an epidemiological standpoint. Such diseases can penetrate far into a large population before their consequences become apparent, as happened with AIDS. My post is below.

    p.s. tony, could you use a different word than sterilizing? When you are talking about an infection which can be sexually transmitted people could get the wrong idea.
    currer likes this.
  12. tonydewitt

    tonydewitt

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    Sorry Aciendaze, I sometimes forget that not everyone is as clinical as I am - although the correct medical term is "sterilizing cure", I can see how other people could misperceive that to mean something else. Thanks for mentioning that this infection can be sexually transmitted - Doctor HHH of the MedHelp site doesn't consider it so. And yes, you make an excellent point - HTLV latency is so much longer than HIV's that it has the potential to spread much further than HIV. Furthermore, considering that doctors don't give a crap about HTLV, that will also fuel its spread. Recently Doctor Wohl of the TheBody site wrote that there's no reason to test anyone for HTLV since no treatment exists. How's that for adhering to the hippocratic oath? I keep wondering at what numeric flash point (number of people infected) will the medical industry realize that HTLV has been ignored to too long and needs to be treated? Oh yeah, that will never happen because no one tracks the number of HTLV infections.
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  13. anciendaze

    anciendaze Senior Member

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    I think Dr. HHH may be comparing this to transmission via IV drugs and shared needles, which is rampant in this country. (The other possibility is that he got his MD along with Cracker Jacks. ) In Japan the main routes of infection are breastfeeding infants and male to female/male sexual.

    The population where U.S. authorities could do something, but are not, is in prisons, where many IV drug users either pass through or end up. I've checked with some doctors, and discovered they don't test for HTLV-1 unless there are symptoms. The idea that 97% could be asymptotic carriers was news. Most are unaware of research in either Japan or the Caribbean on sexual transmission. When they tell me they don't see a lot of cases, it turns out they don't worry about misdiagnosing opportunistic infections, which they may be treating without knowing there is an underlying cause. This attitude is like the beginning of the AIDS pandemic all over again.

    If the latency is greater than 20 years we are still not seeing most cases from the surge in IV drugs a long way back.
    currer likes this.
  14. tonydewitt

    tonydewitt

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    Unfortunately Dr. HHH really believes that it can't be transmitted sexually, which makes me think that denial is not just a river in Egypt. This type of denial reminds me to state that I am really glad that I found this site, because no one else is willing to discuss these health issues seriously and openly, especially (and ironically) doctors themselves. So THANK YOU for being here!

    Aciendaze, multiple excellent points you made, especially the one regarding testing prison populations - last week I asked that exact question to Doctor Wohl, who does major work with North Carolina prison populations, and his answer was disappointing - he wrote that since no treatment exists, he sees no need for testing (reminiscent of "and the band played on"). Meanwhile, Richard Engath (who isn't a doctor) is trying to get the New York legislature to include HTLV testing in prison populations, how's that for contradiction? And yes, doctors not routinely testing the general public for it (but testing for everything else) is another layer of denial, and absurd to say the least. My ID doctor says that she's seen two cases of it in 22 years of practice, and only tested those patients for it because they were from endemic countries (to which I replied by asking her if she had heard of planes transporting people across the world).

    And the most important point you made (and one I've been echoing for a while now) is that their attitude is just like HIV in the early eighties - they'll treat some opportunistic infections, pat you on the back, and patch you up until you die, while the disease spreads rampantly. And you're also right about the silent explosion of cases that originated from IV drug users a long want back - those numbers are going to be staggering, but since no one routinely tests for this, the actual numbers will never exist.

    I am relieved, validated, and happy that you not only see all of this, but also put it into words. Before your post, I could swear to God that I was the only one who saw these multiple hypocrisies.

    Thanks again.
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  15. anciendaze

    anciendaze Senior Member

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    In that study linked above (and here in my quote) the rate of infection of children born to infected mothers is about 20%. This can be greatly reduced if precautions are observed. This is one case where the moral imperative is particularly clear.

    Below is a quote from another exchange concerning the implications of having another incurable infectious disease loose and uncontrolled in a large population. Note that a situation which took centuries to reach in another part of the world without IV drugs has now developed much more rapidly in a subpopulation here. What limits the spread?

  16. tonydewitt

    tonydewitt

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    Limiting the spread could be attributed to safer sex practices (n.b. HTLV can be transmitted to a person giving unprotected oral sex), cultural norms (subpopulations having having less sex partners), using clean needles, and reducing travel (recall I had to point out to my ID doctor that planes transport people). An "outbreak" (20 people infected) of HTLV in a Northern Canadian native tribe resulted in authorities instituting antenatal testing for that tribe, but I would argue that prophylactic antiviral medication could be administered to reduce the 20% infection rate even further - after all, that's what's done with pregnant HIV+ women, so why have a different standard of care for HTLV+ women? Are the doctors still in denial that a child born with HTLV has a serious chance of being crippled or leukemic before the poor kid reaches age 10?

    You make a great point - here in the non-traditional USA, where people are doing it all (i.e. unprotected sex, IV drugs), the sheer numbers could go through the roof. Again, because no health organization is testing for HTLV, we won't know until it's too late.
  17. tonydewitt

    tonydewitt

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    I posted this somewhere else, but because I think it's worthwhile reading, I am posting it here as well (please forgive me if you've read this already); it deals with doctors refusal to deal with HTLV:

    While Dr. HHH and Dr. Bob and Teak all agree that three month HIV testing is conclusive, all of them refuse to discuss HTLV. And when Dr. Bob (who was HIV positive for 20 years and receiving the best medical care in the world) suddenly died last year (God bless his soul), he died from sepsis, which is a common death for native people with HTLV. I don't have a crystal ball, but between the number of doctors refusing to discuss HTLV, and the number of people dying of HTLV related causes, HTLV is a major problem that is not being dealt with at all.

    Ever notice that two SEPARATE conferences take place for HIV and HTLV, even though they have similar names? One is called Conference on Retrovirology and Opportunistic Infections, and the other is called International Retrovirology Conference. Being that the words "Retrovirology" and "Conference" are common between the two, can't they be held together and cooperatively help each other? Is this a case of segregation? HTLV sufferers to the back of the bus?

    Best wishes.
  18. tonydewitt

    tonydewitt

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    I don't know if you've seen the news, but they claim to have cured TWO MORE people of HIV using chemotherapy & a bone marrow transplant. This was the same approach used in the treatment of the patient in Greece who was cured of HTLV. So interestingly, both HIV & HTLV (retroviruses) are treatable and curable using the same approach (chemotherapy & bone marrow transplant).
  19. Daffodil

    Daffodil Senior Member

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    hmm at this point, maybe a bone marrow transplant would give me a better quality of life LOL
  20. tonydewitt

    tonydewitt

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    That makes both of us Daff - I'm a little miffed at the medical authorities who say that a bone marrow transplant is risky, but are completely okay with people being crippled with myelopathy or dead with leukemia from HTLV or HIV.

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