Positive for Defrietis Virus and Seen at NIH 1991

Discussion in 'Fibromyalgia Main Forum' started by spacee, Oct 15, 2009.

  1. spacee

    spacee Member

    I have labwork ordered by Paul Cheney stating that I was positive to a novel Cfids retrovirus 1991

    Then that same year the NIH wanted to see me because my tcell count was the same as an HIV patient with AIDS. They studied me for 5 years.

    Even was seen by Dr. Straus who was over CFS at the time (now dead of brain cancer age 60 but not before they pinned a Medal of Honor on him). He stated that I did not have CFS.

    At the same time they were busy destroying Dr. Defreitas
    reputation. These people are just plain evil.

    Thank God for our CFS researchers (all of them) who have stuck with us.

  2. jasminetee

    jasminetee Member

    That's just incredible! I love your name btw, I can so relate.

    So you mentioned before that they're interested in seeing you again right? I can't believe your T-Cell count went so low. Do you think that happened to a lot of us? Actually, I can't recall who might have wanted to see you now. The WPI perhaps?

    How could Strauss treat you that way when your T-Cells were so low. Did he also try to say AIDS patients were a bunch of malingerers?

    [This Message was Edited on 10/15/2009]
  3. spacee

    spacee Member

    All of this was done between 1991-1995/6.

    I think they had just invented the t-cell counting lab. People without HIV (like me) were coming up with t-cell counts just like HIV patients with the AIDS (Aids just means that their t-cell counts had dropped so low that they were beginning to get the opportunistic infections. Normal is 500-1000, mine was 185.

    If anyone had a T-cell count less than 300, they were required to be reported to the CDC...even those of us without HIV.

    The NIH got 25 of us to come to the HIV Clinic at the NIH and be studied for 5 years. They wanted to see what we died of....that was the whole purpose of the study. They did not expect us to live and they wanted to see the cause.

    So, here I am being studied and I call Dr. Straus's office and tell them that I am going to be there and he asks to see me. Only, he doesn't mind at all that my T-cell count is 185. He writes to my doctors that I need to see a psychiatris cause I had had a panic attack prior to becoming ill.

    No Straus thought the AIDS patients were sick because they were dying.

    I was so sick and I had lost down to 108. But with kutapressin and heart med for tachycardia I was up to 116 (5'5").

    Well, that was insanity on his part, for sure.

  4. spacee

    spacee Member

    Ity, bump.

  5. TeaBisqit

    TeaBisqit Member

    91 seems to be a magic year for alot of us. With me, I originally thought it was HIV, but I came up negative. Low T Cells, high viral counts. Nearly dead, too, yet....alot of my labs were ignored and I was told, take an antidepressant and shut up. And basically just shuffled from doc to doc. Enlarged liver, spleen, lymph glands and ended up with encephalitis. And no one could tell me what was wrong other than that I was given the CFIDS/ME diagnosis and later an Advanced Lyme diagnosis. But in 91, I caught a viral that did this to me. The only one with a brain was my original doc. He immediately gave me the CFIDS diagnosis and he said there was an outbreak of it on Long Island where I lived and he had been seeing alot of cases of it. Two months later, the cluster outbreak was "silenced" and my doc decided we were all insane. Complete 180, and this was someone had been going to since I was a baby. It screamed of a coverup.
  6. spacee

    spacee Member

    I don't know how much Straus had to do with it but a lot I suspect. At least as much as anyone else.

    I am almost surprised that any CFS researchers stuck with us.
    I ask myself, would I have gone through the rigors of med school and risked my reputation for this. But they did.

    Someone at the NYT's seems to know all the right researchers to contact. I am grateful for that.

    Thanks for posting.

  7. AuntTammie

    AuntTammie New Member

    reading this, and knowing how physically horrible and how emotionally draining and frustrating, etc this all is, I have to give those of you who have had CFS for so long credit for just continuing to go on and continuing to even still have hope, for finding the energy to read the latest studies, etc

    .....I've been sick for over 5 yrs and in that time have become all too aware of the CDC's harm to us, the impact of the illness itself on us, the isolation, etc, etc, and I am so tired of the battle and of feeling horrible,etc.....I can barely imagine how it must feel to have dealt with this so much longer

    so, anyway, I just wanted to say that I do give you a lot of credit for not just completely giving up
  8. spacee

    spacee Member

    I think Tea will agree with me that it has been terrible. I heard a man at a church give a talk on "Even good people live in Hell".
    And, I thought...that is my life. But it is one day at a time.

    I hope some meds come out of the latest news.

  9. AuntTammie

    AuntTammie New Member

    wow - I wish I could have heard that talk

    ....so many of even the most well-intentioned church-going people seem to think that sickness is a direct result of sin.....while it may very well be true IN SOME CASES, it is also very true that not all people who are sick are being punished by God.

    ....and there are so many exps in the Bible of good Christians who still have illnesses and other bad things happen to them (Job is one great exp, Paul and the thorn in his side is another, and Jesus himself addresses this issue in the book of Luke, can't remember the chapter and verse offhand)
  10. Svette_Palme

    Svette_Palme New Member

    When a man prayed to God for courage, God gave him the worst troubles anyone could imagine.

    The man developed courage.

  11. AuntTammie

    AuntTammie New Member

    LOL.....I have often noted a similar effect in my own life....esp concerning issues of trust

    it got to the point where something bad would happen, or I would be worried about something, and I would pray to ask God to help me to trust Him more, but if possible to please not do so by bringing more uncertainty or worries into my life so that I would have to trust Him with getting me through those!

    I know it sounds crazy, and I also believe that if I am asking God for help, I should not really be attempting to direct how He chooses to answer my prayers.....but I can say that I have been thru a ton in my life, and that as a result I have learned to trust Him more fully.....and that when I have trusted Him, I have been rewarded for doing so
  12. ChuckNBerkeley

    ChuckNBerkeley New Member

    1991 was a bad year for me. First CFS symptoms in February.

    On October 15, 1993 Immunosciences Lab in southern California tested my blood for "NEW CFIDS MARKERS" amongst other things. I have pages of results.

    Lots of abnormalities.

    TOTAL T-CELL 535.0 REFERENCE RANGE 701-3758 mm3

    Low Totals;
    T3 (CD3) positive C
    NK cell activity
    CD8+, CD11B+ cells
    CD4, CD45 RA

    Doctor said I had CFIDS. Suggested I see an immunologist in SF to try Transfer Factor.
  13. spacee

    spacee Member

    I finally found my way to TF's. Did you take them and did they help you at all. Anything else help you. You had an unusually good doc. I found out I had CFIDS from a friend who I knew when we were well. She had moved out of state and got sick about the same time I did...1986. Her doc diagnosed her right away and she told me the tests to ask for and gave me the CFIDS Journal info. Rest is what I wrote but it took me a while to get to the Cheney Clinic (1991) cause of being so sick, moving to a different town, etc.
  14. denis321

    denis321 New Member

    but I didn't become ill until this decade.

    My primary care doc has a large HIV panel and when I came down with this, upon my request, she tested my immune system.

    She's followed T-cell count since although we haven't had much means to raise it.
  15. dannybex

    dannybex Member

    This is a weird question, but I've been googling and can't seem to find the answer.

    Is Elaine DeFreitas still alive? I've seen her mentioned with all this news about XMRV, but no mention of her commenting on the studies, or if she's even around.

    If she is still living, have you read or heard of any comments she might have on this new research?


  16. illroy

    illroy Member

    Elaine is still alive. I think she'll like being publicly vindicated for her previous work.

  17. RunningAntelope

    RunningAntelope New Member

    As well she should be. I was one of those HIV-negative AIDS patients (1992), as was my wife, in the first three years of illness. Very few human viruses are capable of that kind of exclusivity of destruction of T-cells. And while HHV6a does appear to retain that capability, it generally does so in concert with a retrovirus. That AIDS and CFIDS appeared to hit critical mass around the same time with the same demographic clustering is a curious thing indeed.

    Retroviruses share the innate ability to not only hijack our cell's machinery to transcribe their own RNA into DNA, but can intercalate into our very own DNA and have complementary sequences to coding regions in our own DNA that enable them to shut off our own enzyme systems involved in dealing with reactive oxygen species. If they can shift the redox state and maintain a more oxidizing state, the more they ensure their own survival. Cancer also tends to persist in an oxidizing state.

    I believe that a novel retrovirus will prove the missing link ultimately.
  18. genevieve

    genevieve New Member

    Hi Spacee and Running antelope, so sorry to hear of the way you were treated by the CDC, totally shocking. Thank you for telling us all about it and hope this new research will lead to help and validation.

    Running antelope, that info on retroviruses is v interesting, do you have any links for this info, I'd really like to read up on it?

    The link with oxidative stress is fascinating, from testng I've got high levels of oxidative stress going on, so common in ME, this could help to explain all the research findings of high oxidative stress in CFS. And shows how Marti Pall's treatments and Cheney's artesunate could be of genuine help.

    Yes I agree it is very strange indeed AIDS and CFS appearing at the same sort of time, one going for the innate immune system, CFS, and the other for the aquired immune system as in AIDS, and both having the association with HHV6a. And both possibly caused by retroviruses that would appear to have jumped species.

    Do you know if enteroviruses, also so common in CFS, also tend to work in concert with retroviruses? Could a similar thing be happening there? What about the other herpes viruses, eg mono, HHV4 and cytomegalovirus?
  19. jenbooks13

    jenbooks13 New Member

    Passing strange huh...HIV, XMRV...and don't forget the borrelia epidemic all about the same time.

    I've done a little reading to see when they started manipulating MLV. I see some articles in the 1970's which look to me like scientists reassuring themselves that MLV cannot infect humans because of our complement system etc.

    One sample pubmed abstract:


    Well they have been wrong about the danger of most of their viral vectors and of course they don't assume adapatation or use of host factors etc. I just suspect MLV equals XMRV because of genetic manipulation that probably began in the 1970's and began to be used in experiments in the 1980's. I'm checking now to find out.

    I don't know about HIV but I don't really understand how SIV jumped species in Africa and infected us in spot cities here--San Francisco NY LA, I really do believe the heptatis B vaccine carried it but folks will say I'm a conspiracy theorist. Maybe they used simian cells to make the vaccine. They often use nonhuman primates even today in tailored gene therapy. They have to tweak things in the dish in SOME KIND OF CELL.

    And what about borrelia and ticks? Another timely mystery.

    They have way underestimated the dangers involved in manipulating pathogens whether for vaccines or gene therapy or whatever. They underestimate the danger of using nonhuman cell lines as growth mediums. Ultimately I think that's where these horrible epidemics came from.
  20. jasminetee

    jasminetee Member

    Spacee, what Strauss did to you is criminal. Plus, what a complete moron he is! Thanks for explaining that more. I'm also very sorry for all of you who have similar stories to tell. I got sick in 1985 with EBV so I believe that's why my T-cell count wasn't tested.

    jenbooks, Wow! What an article! OMG. I think you sound like you're on the right path here.

    Quotes from the article written in 1995:

    "Type C retroviruses endogenous to various nonprimate species can infect human cells in vitro, yet the transmission of these viruses to humans is restricted."

    "Here we report a novel mechanism of complement-mediated type C retrovirus inactivation that is initiated by the binding of "natural antibody" [Ab] (anti-alpha-galactosyl Ab) to the carbohydrate epitope Gal alpha 1-3Gal beta 1-4GlcNAc-R expressed on the retroviral envelope."

    "Complement-mediated inactivation of amphotropic retroviral particles was found to be restricted to human and other Old World primate sera, which parallels the presence of anti-alpha-galactosyl natural Ab. Blockade or depletion of anti-alpha-galactosyl Ab in human serum prevented inactivation of both amphotropic and ecotropic MURINE retroviruses." -- MURINE means MOUSE as in XMRV- Xenotropic MURINE Lukemia Virus-Related Virus. Holy Smokes!!!!

    Doesn't this next quote seem to contradict their first assertion?
    "Similarly, retrovirus was not killed by New World primate serum except in the presence of exogenous anti-alpha-galactosyl Ab. Enzyme-linked immunosorbent assays revealed that the alpha-galactosyl epitope was expressed on the surface of amphotropic and ecotropic retroviruses, and Western blot analysis further localized this epitope to the retroviral envelope glycoprotein gp70."

    "Finally, down-regulation of this epitope on the surface of MURINE RETROVIRAL particle producer cells rendered them, as well as the particles liberated from these cells, resistant to inactivation by human serum complement. Our data suggest that anti-alpha-galactosyl Ab may provide a barrier for the horizontal transmission of retrovirus from species that express the alpha-galactosyl epitope to humans and to other Old World primates."

    "Further, these data provide a mechanism for the generation of complement-resistant retroviral vectors for in vivo gene therapy applications where exposure to human complement is UNAVOIDABLE." O_O

    [This Message was Edited on 10/18/2009]