Anyone test positive for HTLV I, II?????

Discussion in 'Fibromyalgia Main Forum' started by nah.stacey, Feb 10, 2010.

  1. nah.stacey

    nah.stacey Member

    A few months ago we were posting about if anyone has yet been banned from donating blood yet??? Because, oh hey, it's "all in our head" right?

    I think someone said that in the UK they couldn't donate blood, but we in the U.S. are still allowed. We keep trying to donate it for William Reeves and his team. :)

    I put a post on about how in 2000 I was sent a nasty letter from the Red Cross telling me that I couldn't donate because my Western Blot(the test they use to screen for HIV/AIDS/Syphillis virus' etc) test came back false/positive or something a long that line. I had kept the letter in my permanent medical file for the longest time but haven't seen it for a while so I requested a copy for the Red Cross. I also asked for a more conclusive explanation of what was OFF with the Western Blot. Well two weeks ago a blood counselor called from the Red Cross saying she just wanted to verify my address. UuuuHhuuhh. Sounded kinda fishy but whatever, she also asked why I needed the letter. I explained to her about my CFS and how it was getting worse and worse and how they were working on a test for XMRV and that I believed what I had was viral and wanted more information on why my blood was rejected. I also explained to her about the CDC conference on Oct., the big to do with the XMRV finding and how those of us with CFS could very well be passing on a virus unknowingly because no one will believe us that it IS viral. So this got here attention and she said to give her a week and she would check into it better and find a real answer for me.
    Well, I got my paperwork back today, and it read all kosher on the Western Blot test, not one test out of kilter, but on the next sheet it was for the HTLV I, II ,III, IV virus. Positive for I, Positive for II. HHHmmmmm, they couldn't have sent that in the letter 10 years ago?????
    This is the explanation of HTLV I, II:

    "HTLV-1 stands for Human T-cell Lymphotropic Virus. It is a retrovirus, in the same class of virus as the AIDS virus, HIV-1. HTLV-I is associated with a rare form of blood dsycrasia known as Adult T-cell Leukemia/lymphoma (ATLL) and a myelopathy, tropical spastic paresis. However, even with infection, fewer than 4% of seropositive persons will experience overt associated disease."

    Well get out.......... a retrovirus??????? XMRV???????? I may just be in the lucky 4%.

    Now if they could just get the XMRV test perfected enough to go grand scale I might have a few more pieces to the puzzle called me. Or maybe it isn't HTLV I, II at all maybe it really is XMRV. Who knows, to me a retrovirus is a retrovirus and it's a mean little buggerl.


  2. ladybugmandy

    ladybugmandy Member

    i think HTLVI is common in parts of japan and other places but not too common in north america. not sure about HTLVII. HTLVIII is HIV isnt it? never heard of HTLVIV!?

    i think they have discounted the HTLV's as being involved with CFS....but i dont think a lot of docs test for them. i was planning on asking my doc for a test soon but dont know if he will do it.

  3. denis321

    denis321 New Member

    The confusing thing is HTLV-III and HTLV-IV USED to refer to HIV-1 and HIV-2 but now they refer to something else so you might want to ask the Red Cross specifically what they meant when they used it on your forms.

    Also, re: HTLV-1 and 2, there was work done on this by several researchers in the 1990s showing what LOOKED like HTLV-2 in people with CFS but was eventually concluded to be at most "HTLV-2-like." Although the WPI said at one point, this finding was not the same as XMRV, I also wonder if it is the same.

    What I would urge you to do is to post on the WPI Facebook page OR write the WPI about your results and see what they have to say. If you are planning or have already gotten the XMRV test, it would be interesting to compare those results with it.
  4. nah.stacey

    nah.stacey Member

    thanks for your replies, and you are both right in a sense.
    It is more common in Japan, only because they said it was more tropic related, but can still be xenotropic. It was also known as the first RETROVIRUS HHHMMMM where have we heard that word before.

    In the blood work that came back from the Red Cross, it is an entirely separate testing from the HIV strains. It was tested by two separate manufacturers tests and both came back positive.

    Do you think I should go to an immunologist, a hematologist, or a disease control center?
    I'm just wondering who would have access to the XMRV test other than WPI.

  5. slammed

    slammed Member

    I'm intrigued about how the Red Cross's blood expertise has been to your advantage, and I'm thinking why shouldn't each one of "us" consider doing the same? They have provided you with something useful, or at least it's better than nothing, right? All who are energetic enough could begin the "blood donation" process with them, but disclose right up front that we have CFS and there may be a virus involved (no intent to harm thus covered).

    It would possibly be very informative to see their results, since they surely must have a great lab process because they _ are_ in the blood business. Personally, I haven't ever considered donating blood to the Red Cross because most of my adult life is an expanse filled with knowing I felt ill, although the reason(s) wasn't ever confirmed by my doctors at the Veterans Administration(my only health care provider). Since WPI confirmed a positive for XMRV for me, it certainly does only strengthen the decision that I won't allow my blood into the supply system.

    But it would be very interesting to me to see what the Red Cross would have to say about the condition of my blood, and would their lab report have any additional information other than what the V A has done up to now? It could be another resource,for those who aren't financially blessed, to gather as much information as possible, without depleting their meager funds.

    It would be skirting the system a bit, but as long as one is honest in advance about what is known or not known going in, any blood work from a Red Cross lab seems to me a good thing. What do others think?
  6. simonedb

    simonedb Member

    This is fascinating! i watched that film "and the band played on" this winter, the one about the scientists working on aids/hiv back in the early 80s and the frustration of getting the blood banks to cooperate, but if I recall correctly, they didnt have a test for hiv right away but Dr.Don Francis rec'd to the red cross they could use another test that should catch it---hepatitis b, as it looked similar. I forget now, but my point is (I am not a bioscientist so maybe someone here would know answer) what Francis originally had red cross do seems to imply that screening tests for one thing can pick up positives for other similiar unknown things (maybe xmrv?).

    here is a link to what the cdc and red cross did before a test for hiv was available:
    [This Message was Edited on 02/14/2010]
    [This Message was Edited on 02/14/2010]
  7. simonedb

    simonedb Member

    an excerpt, keep in mind that Dr Don FRancis had much integrity and I doubt there is anyone as amazing as him at cdc now and especially no one like that working on cfs, he did leave the cdc to do more good, he pretty much singlehandedly took on the blood banks:

    Critical Event 1
    On January 4, 1983, the Public Health Service (PHASE) held a meeting convened by the CDC in Atlanta on opportunistic infections in hemophiliacs. At the meeting, the blood services community first heard preliminary data on the possibility of a transmissible agent within the blood supply. Scientists from the CDC recommended that blood banks implement specific donor screening measures such as questioning donors about their risk behaviors and running blood donations through a series of tests, among which the most important was for the hepatitis B core antibody insofar as it occurred in most individuals who had AIDS (Curran, Evatt, Foege, McAuley, Pindyck, Rodell interviews; Foege, 1983). There was broad resistance to the implementation of specific donor screening measures, and the meeting ended with no consensus on the validity of such measures for the exclusion of high-risk donors.
  8. simonedb

    simonedb Member

    Stacey, I googled htlv as your post has really got me thinking, I think your experience speaks volumes, but I am just not sure exactly what the main message is for us to take away, but anyway found the post below on mednet from 2000, was that you? That info saying an explanation was hunters getting it from monkeys while hunting sounds bogus, and reminds me of articles I have read, one was in Rolling Stone in 1991, about aids possibly coming from childhood vaccinations as they used monkey plasma in the late 50s that could have been contaminated, so the woman in the post below, who had no risk factors to get htlv, well maybe she got it from a childhood vax, maybe cfs is related to tht in many cases.
    The excerpt from mednet in 2000:

    Infectious Diseases

    HTLV 1/2 false posetives
    I recently recieved a letter from the Red Cross that I can no longer donate blood because I tested posetive on two HTLV 1/2 antibodies EIA tests and indeterminate on HTLV 1 Supplemental (Western Blot). I have since had my doctor send a blood sample for more EIA tests and they came back "repeatedly posetive". I will have more blood drawn for another Western Blot test, but how can I find out if these posetives are false posetives? I have had sinus problems (could be allergies) and was just getting over a cold the day I donated to Red Cross. All my other donations were normal. I have searched the library and MedLine for articles and information, but it does not directly relate to me. First of all, I do not fit any of the catagories for risk of this blood disease: Monogomus for 5 years, non drug users ever, white and have not traveled abroad or had any blood transfusions. My doctors solution (and I seem to know more than he does - scary) is go to the infectious disease doctor. I think we should rule out as many possibilities first, then go if we fail to norrow down the field and find out if it could be caused by something else. I need to know what tests I should have, what the antibody count should be and how I can rule out this disease and find out what the real problem is? There must be something wrong to have tested posetive for high antibodies. My husband and I are very worried and concerned. What tests can I take? How can I find out what the real problem is?


    I cannot give you specific medical advice about your condition. However, I can provide you some information about HTLV-I and HTLV-II. The tests for these, as you have found out, look for evidence that the body has produced antibodies against the viruses. Even though antibodies that react to the tests for HTLV-I/II may be present, it does not necessarily mean that one has been infected with the virus. The complexity of the immune response can sometimes allow the production of antibodies that cross-react in tests (i.e. one may have a non-specific viral infection that produces a set of antibodies that may cross-react in tests looking for other viral infection(s) to which a person may never have been exposed).

    The blood banking industry does not do testing for the purpose of diagnosing persons with disease. It does testing to exclude "possibly" infectious blood from being given to persons. Given this goal of the blood banking industry (to prevent infected blood from being transfused to another person), it sets very strict criteria for excluding blood from being used. These criteria are not necessarily those that one`s own personal physician would use to diagnose a disease. In fact, because of these strict criteria, there are a number of persons who have positive results on these screening blood tests, but who, in reality, do not have the disease being screened for. This gets into the predictive value of the test being used for screening. Any test being used to screen a population has limitations on how well it picks up disease. If you screen a highly selected group of persons with risk factors for a disease (in the case of HTLV-I/II we could use the example of injection drug users/abusers), the ability of a positive test result to predict (on an individual basis) who has disease is high; on the other hand, if you screen a general population (as occurs with blood donations), the ability of the test to predict who (on an individual basis) actually has the disease is not as good (or may even be low). But, when the goal is to protect as many persons as possible, the blood banking industry chooses not to use blood from anyone who has a positive test result, even if the person does not truly have the disease.

    Seeing a specialist for a test result obtained from such screening would be reasonable. The specialist may be able to use different or additional tests (based on the history of the person involved and his/her risk factors [or lack thereof] for the disease) to figure out if someone is truly infected with the virus, or if he/she has a false positive test.

    I would recommend that you review information at the American Red Cross web site. You may also wish to contact the Transmissible Diseases Dept of the American Red Cross in Rockville, MD for further information. Also, the Food and Drug Administration`s Center for Biologics Evaluation and Research (the division that helps regulate the blood banking industry) may have some useful information. One additional item may be of help to you. In 1993, the Public Health Service (Centers for Disease Control and Prevention) put out guidelines about HTLV-I; these guidelines were published in the Annals of Internal Medicine, volume 118 (pages 448-454) 1993.
    [This Message was Edited on 02/14/2010]
  9. simonedb

    simonedb Member
  10. denis321

    denis321 New Member

    I think if you mentioned you had CFS up front with the Red Cross, they would refuse your blood without testing it. After all, testing the blood itself costs money. On the other hand, asking about it would be a way of checking out if notices about CFS have been sent out to blood banks already or if everyone is still in the dark.

    FWIW, US gov't agencies have issued out a notice advising CFS sufferers NOT to donate blood until screening tests are developed.

    This post did make me think about calling up the National Bone Marrow registry in the US since I have been on the registry for more than 10 years. Was actually called for a potential match a few years ago but I told them I had CFS and did not want to donate. However, I was wondering if they had any test data on blood taken from me when I was healthy or blood test results.

    Nah.stacy: I suggested the WPI not only because they have the XMRV test but also because the researchers there might be interested in your results given the checkered history of retrovirus involvement in CFS.
    [This Message was Edited on 02/14/2010]
  11. nah.stacey

    nah.stacey Member

    Thanks so much for the information.

    When I spoke to the blood counselor she seemed totally in the dark about CFS and it's relation to a virus. I agree it would be most interesting if CFS sufferers, those whose Dr.'s won't give them a definitive diagnosis, donated blood to see if the Red Cross sent them a letter too.

    In 2000, I didn't know I had CFS or FM only that I was sick all the time. I obviously haven't attempted to donate any blood since then and have taken myself of the "Doner" list at the DMV. The Red Cross did state that if I attempted to donate blood again it would be considered a Federal Offense. Imagine, I'm NOT sick, according to my Dr.'s but I could be thrown into Federal Prison if I try to donate blood. Something is wrong with this picture.

    Funny you should pull up that mednet article. I'm sure it is the one I post all those years ago searching for information and getting no where. I never did go to another doctor that specialized in virus', and any doctor I gave the Red Cross letter to had never been concerned enough only to say it wasn't anything to worry about. Well let me tell you, feeling this sick all the time IS something to worry about.

    I wouldn't give this illness to my worst enemy. During it's worst times I have prayed for death.
    It's strange how sometimes it's worse than at other times, it's almost like labor, you forget how bad it really was till you do it again. :)

    Thanks again,
  12. simonedb

    simonedb Member

    that is strange that it would be a felony to donate blood yet doctors who see the letter say don't worry about it. absurd.
    please keep us posted on what you find out.
  13. tonydewitt

    tonydewitt New Member

    Frankly I wouldn't be surprised if everyone who was mysteriously sick eventually was diagnosed with HTLV - here's why:

    1. No routine testing exists for HTLV - doctors (even infectious disease specialists) will test you for everything BUT that when you present with illness. Yet blood banks test for HTLV, which is a hint that it's more of a serious problem then it's made out to be.

    2. No statistics are kept for HTLV infections, i.e. how many people in America are infected with HTLV? How has that number grown over the past 10 years? Over the past 20 years?

    3. Testing for HTLV is hit or miss (mostly miss); Mr. Sowadsky on TheBody site stated that some people take YEARS to develop HTLV antibodies. Even people with full-blown HTLV symptoms aren't able to test positive on antibody tests, requiring PCR, and/or Western Blot tests to be diagnosed as HTLV positive.

    4. Since HTLV antibody testing is not conclusive, the blood banking industry does not publish the number of people infected with HTLV by blood transfusion, since this is (a) bad press, and (b) would only serve to raise awareness of HTLV as a public health problem.

    Best wishes.

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