I tested positive to Elaine DeFreitas HTLV II in 1991

Discussion in 'Fibromyalgia Main Forum' started by spacee, Jul 17, 2010.

  1. spacee

    spacee Member

    I just got the letter from the Cheney Clinic. All these years I knew I
    tested positive to "a retrovirus" but no one told me what it was.

    Oddly enough, through info here my doc has already tested me this
    year for this HTLV II and it came back negative. (I am guessing it
    is deep in my tissues by now).

    Nancy Meyers from the Clinic wrote this in the letter:

    Dr. Cheney used the Elaine DeFreitas probes for the HTLV II for the 4505
    CFA Retrovirus Assay. It could be cross reacting to the new XMRV virus
    when under certain lab conditions.

    Well, not sure what cross reacting means. I have been wondering if the
    XMRV is even worth me getting tested for since I was positive to the one
    in 1991.

    My doc is going to croak...I have been going to him since 1990. I think
    many a time he has wished I were not his patient...this will be another one.

    Any thoughts welcomed.


    [This Message was Edited on 07/17/2010]
  2. spacee

    spacee Member

    I just found my notes from the NIH (some of them). Happen to have some of the
    lab abnormalities and the notes that Dr. Straus had the audacity to say "somatization".

    On his deathbed, Dr. Straus was still writing letters to the British Journal of Medicine
    about CFS being psychiatric. Dr. Enlander in New York wrote a response of "how
    dare he still say this".

    Will have to mention the NIH made mistakes in their final notes. I never had a
    t-Cell count above 300 and usually it was 185. But they have one year as 460.
    No one read it to catch the error.

    The years I was studied there, I have never seen so many people doing so little

    Has been a very, very long time.

    [This Message was Edited on 07/17/2010]
  3. simonedb

    simonedb Member

    I am confused, why did you get a letter from cheney now about the '91 tests?
    the thing defreitas found, it wasnt htlv was it? cus htlv is an admitted retrovirus of unknown significance supposedly but whatver defreitas found didnt the cdc say they couldnt find it so it was considered to be nothing significant (according to cdc back then, not that I agree)

    this thread from earlier this year has a lot of good info on htlv and the blood banks, I rememberd I really researched it back then after watching the film "and the band played on" and remembering tom curtis article in rolling stone etc about aids/hiv and vaccines.
    nahstacey was told by redcross she has htlv thats how the thread came up.
    I kickd around idea of starting blood donor process to get the free screening, didnt do it, now maybe we couldnt cus of news w/xmrv and blood banks recs with cfs changing.

  4. spacee

    spacee Member

    it came up when I was googling about the Htlv. The thread was in Feb.

    I was seen at the Cheney Clinic in 1991 and they did the test. The lab report only
    said that I was positive but didn't say which retro.

    I emailed Dr. Cheney for the virus...no response.

    Made a copy of the lab and sent it to his office stating that I would pay $200 for
    the name of the retro that I was positive for.

    What I posted was the letter that I just got back today. Crazy isn't it. Certainly
    doesn't make total sense to me. Especially since I test negative for it now.

    I don't know what to think. Guess I will get tested for the XMRV and see what
    happens. My DH is trying to get long term care (nursing home) insurance for
    me and he asked that I wait til the insurance co. says yes or no to me.

  5. simonedb

    simonedb Member

    well so what does this mean?
    is this the virus defreitas claimed to find?
    did you have to pay cheney the 200 bux?

    sorry for yr struggles, thanks for continuing to share, hang in there
  6. simonedb

    simonedb Member

    They then disclose the primer sequences for CAV and then state that "body fluids of CFIDS patients have shown reactivity with antigens of HTLV-I by Western blot.... Moreover, the majority of CFIDS patients have serum antibodies to a P27 protein on the HTLV-I Western blot. P27 is presumably a product of the tax gene."



    someone explain please!!!!!!!!????????????

    cav was the name of retrovirus she found

    wait, just found her abstract:
    Retroviral sequences related to human T-lymphotropic virus type II in patients with chronic fatigue immune dysfunction syndrome.

    DeFreitas E, Hilliard B, Cheney PR, Bell DS, Kiggundu E, Sankey D, Wroblewska Z, Palladino M, Woodward JP, Koprowski H.

    Wistar Institute, Philadelphia, PA 19104.

    Chronic fatigue immune dysfunction syndrome (CFIDS) is a recently recognized illness characterized by debilitating fatigue as well as immunological and neurological abnormalities [Straus, S.E. (1988) J. Inf. Dis. 157, 405-412]. Once thought to be caused by Epstein-Barr virus, it is now thought to have a different but unknown etiology. We evaluated 30 adult and pediatric CFIDS patients from six eastern states for the presence of human T-lymphotropic virus (HTLV) types I and II by Western immunoblotting, polymearse chain reaction, and in situ hybridization of blood samples. The majority of patients were positive for HTLV antibodies by Western blotting and for HTLV-II gag sequences by polymerase chain reaction and in situ hybridization. Twenty nonexposure healthy controls were negative in all assays. These data support an association between an HTLV-II-like virus and CFIDS.

    someone please explain to me, if htlv is a retrovirus that is admitted to exist that redcross checks for then remind me, what happened to defreitas? is this the abstract of the controversial cfs research she did and lost her reputation for? why, if htlv 11 is admitted to exist, what was the supposed problem?

    [This Message was Edited on 07/17/2010]
    [This Message was Edited on 07/18/2010]
  7. simonedb

    simonedb Member

    2000 SEP 4 - (NewsRx.com) --

    Scientists in Brazil report they are studying a case of a rare brain disorder caused by human T-lymphotropic virus II (HTLV-II), a retrovirus closely related to HIV, which could lead to a better understanding of HIV.

    Blood samples taken from a 53-year-old sanitation worker, who developed slurred speech, sluggish reflexes, and difficulty walking, indicate she has contracted HTLV-II, said Wagner de Oliveira, a spokesman for the Rio de Janeiro-based Oswaldo Cruz Institute, which conducted the research.

    While the virus itself is not rare - hundreds of thousands of people have been infected with HTLV-II since the early 1980s …
  8. spacee

    spacee Member

    To first say her reputation was ruined ....then it is said to be a retrovirus...with no
    mention that she discovered it first.

    I guess I will get back on the list for XMRV and see what it says.

    And, yes, I am sending $200 to Cheney since I said that I would.

  9. simonedb

    simonedb Member

    As Hilary Johnson reported in Osler's Web:
    "DeFreitas spoke next. . . . 'Clearly this virus is not HTLV-two. We now have additional data that verifies that point.'. . .Then DeFreitas moved on to the most interesting aspect of her work: the virus's appearance. 'We've look at four of these five cell lines. We can see particles by electron microscope, but not extracellular virus,' she said. 'We are not looking for a C-type retrovirus.' The significance of DeFreitas's comment most likely was appreciated by most present: every known human retrovirus was a C-type."

    Read more: http://blogs.myspace.com/index.cfm?fuseaction=blog.view&friendId=82041367&blogId=516645692#ixzz0u5LDkbbm
  10. spacee

    spacee Member

    I can't say how proud I am of just learning how to put the hhtp thingy up in the
    bar and finding it. Only have known how to do that a couple of months...sheesh.

    The woman on youtube who could only speak in a whisper would have been me
    without kutapressin and transfer factors. So sad.

    Darn, that's odd. In Osler's Wed D. says it isn't Htvl 2. Well...nothing left to do
    put the the xmrv test. Not right a way though.

    Thanks for the input!

  11. simonedb

    simonedb Member

    this is one of things I can't figure out, htlv11 was already discoverd before her, but she does have that abstract about, w/koprowski name on it so I don't know how that related to her work on cfs, it could be that it is one of the viruses also commonly also seen with cfs as some people have a slew of stuff.
    I wonder if it is fall out from childhood vaccines from contaminants from monkeys, a virus that is dormant that gets ignited later in life with exposure to new toxin or virus etc.

    If you could get Cheney to talk to you, you should ask him, well, did you guys come to the conclusion then that htlv11 was cfs back then or what do you or did you make of my results at the time? or is there another virus they found (in you too) that he isnt telling you? I dont see why he wouldnt though, I thought he was all for exposing the truth back then and now


    Like Salk and Sabin, Koprowski had the best intentions: He wanted to eradicate a debilitating and deadly scourge. But with what we know now, it's clear there was a certain hubris involved in the rough-and-ready campaigns to conquer polio. There is evidence that all three pioneers used vaccines inadvertently contaminated with viruses from a species dangerously close to our own. If the Congo vaccine turns out not to be the way AIDS got started in people, it will be because medicine was lucky, not because it was infallible.

    The origin of Aids by Tom Curtis


    and the book The River by Hooper goes further, I dont know what the update is...sure don't hear much about it do ya

    [This Message was Edited on 07/19/2010]
  12. simonedb

    simonedb Member

    thanks for the info, glad to hear from someone on the same page

    a part of me wondered if should hesitate to harp on this again (vaccines/viruses) because if that is what the establishment is afraid of and why we haven't gotten far I don't want that to get in the way of developing antidotes now for the illnesses. But if there is an ongoing problem with current vaccines then I guess there is a huge prob; maybe they justify it that the benefits outweight the risks. I have heard though that polio was remediating on its own and it really didnt die down due to the vax, I have no idea, my father was a physician and I know he bought the company line hook line and sinker and I had every vax etc avail in the 60s (I was born in 60). I don't know if my generation is more screwed than the next with that and with us dies the problem.

    Back to defreitas though, your theory, do you know if she considered that about Koprowski and her plight and if so, why not expose it? Unless it was like Silkwood=danger....but that could be my imagination in overdrive.
  13. spacee

    spacee Member

    Eww. I didn't know that DeF.'s boss mishandled the vaccine. That's pretty bad
    but I do get the feeling that some people are collateral damage for the good
    of the whole population.

    Ok, this is the thing. I wasn't Cheney's patient. I was Lapp's. But Cheney was
    doing the study and they took my blood without me seeing him.

    He would never talk to me now without me paying him $13,000 for the first
    year and agreeing to go back for at least one more year. (That would be as
    a current patient). I asked what this virus was before but they did not respond
    until I said I would pay $200 for the info. But maybe because the first was just
    an email, and the 2nd request I sent a copy of the lab work. I will never know.

    Cheney is a man deeply obsessed with helping people get better/well and the
    path he is on now....well, this is sort of a distraction from that.

    My doc is not interested in all this since I am his only CFS patient. And he is
    63yo and coasting. He did say if I tested positive for xmrv, he would give me
    the meds....but I know he wants the NIH or the CDC or FDA to say which drugs.

    Dr. Cheney says about vaccines..."there are no good answers" . That is to
    whether to vaccinate a baby or not. I know of a pediatrician in Tampa who
    won't give them on the schedule mandated by the FDA. He says it is too much
    too fast. He gives them but slower.

  14. spacee

    spacee Member

    The NIH study was of my t-cell population in the HIV Clinic. Not the CFS Clinic.
    My twin and I contacted his nurse and told them that we were coming up for
    a visit in the HIV Clinic. Straus said that he would like to 'evaluate' us.

    He never asked me one medical question. Only psychological (He is an ID
    doc not a psychologist) and his report, which I have a copy of states that
    I have somatization. This visit was in 1995 and he had already made up
    his mind about CFS and he wasn't about to change.

    The HIV Clinic...did save some of my blood. I wonder if they still have it.
    THAT should be tested!

    I am inline to get the XMRV test done as soon as the newer test comes
    out the end of August. They still do the older one but this one does some
    thing else. I need to write it down so I can remember it.

    I don't know why Cheney said HTLV II instead of CAV. Maybe he thought
    I wouldn't know the difference. (He didn't recognize a brilliant mind in my
    note...LOL Just kidding!)

    I am attempting to be seen at the CDC if I am positive for XMRV. My son
    who is a PHD researcher in science (in Nijmegen Netherlands...where they
    did the cover up of XMRV). AND our last name is Reeves....is that not too
    coincidental. Well, he is going to be in Atlanta sometime in Oct. and I
    wanted him to go with me so I could introduce him as Dr. Reeves science
    researcher from the Netherlands. Oh, just don't get me started here!!!
    LOL. The irony is too much!

  15. spacee

    spacee Member

    I own a book that you can get at Amazon.com for $200 or google it and find someone
    selling it for $9.

    The name of the book "Chronic Fatigue Syndrom" edited by Steven E. Straus.

    One chapter is totally devoted to the somatization. But another is devoted to
    retroviruses. And it ends by saying "Chronic fatigue may be caused by a
    retrovirus but we do not have the equipment to find it yet. But one day we

    Can you believe that one? The whole book is dedicated to published articles
    on CFS. But I do think it is not all 'our' brand of CFS.

    Published 1996.


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