HTLV1 virus suspected..

Discussion in 'Fibromyalgia Main Forum' started by Bambi, Dec 27, 2006.

  1. Bambi

    Bambi New Member

    Hi all! I hope you are enjoying the holidays and any time off of work you may have been given..and I hope there WAS some!

    I haven't been here for awhile with the holiday rush and the remodel going on in this house still. I hate to say "remodel" which sounds like a big change in room sizes or fancy new cabinets for the kitchen etc.

    It's mostly painting and laying new vinyl tile and carpeting and one wall he cut through between the kitchen and livingroom to make it seem more roomy and open. But it's been a LOT of work for my husband who suffers (and I mean suffers) with Diabetes 2 and genetic back problem among other things. Slow and steady he has managed to get us where there is at last a light at the end of the tunnel anyway.

    Anyhow, I just got my monthly newsletter from the Awareness people. I"m not sure of the whole name but it deals with FM and CFS and I'm sure some of you get it also. SO this may have already been discussed when I was not here, if so please forgive my repetition.

    In the newsletter they have a very short article about some study that was just finished that shows that the HTLV-1 virus
    (Human T cell lyphotropic virus type 1) may be involved in at least Fibromyalgia. It was a new one to me and thought it might be to some of you also.

    I was so excited at new information being released that I even failed to see what type of anti virals are being used to try to treat it. Maybe you can do some research on your own though if you haven't heard of it. I intend to. I can't CC&P on this machine (too complicated to
    explain but I can't) or I would have just done that with the article. If you don't get the newsletter though they can probably be found in your search by putting in FM Awareness dot whatever.

    Like I said the article was only a few lines long but I'm sure there must be more info out there to be found and read.
    I hope if someone that can CC&P will do so and put it up for us all to read. It didn't describe the symptoms except to say it was similar to several things many of us get and to FM. It didn't say how you get it or anything like that as far as I could tell either. So there's much to learn for me and I hope anyone else that hasn't heard of this yet.

    Have a lovely day! Bambi
  2. apl

    apl New Member

    This is very interesting, but I wish I had more info to go on so I could find the article you mention.

    This reminds me of Elaine Defreitas' research over a decade ago on a possible retroviral connection in CFS.

    I believe HTLV-II was also implicated at one time, but follow-up studies were inconclusive (this one is even mentioned on the CDC website).

    If there is any way to add any more info, I would be grateful to be able to find out about this. Anyone?

    Thanks for the heads up, Bambi!

    [This Message was Edited on 12/27/2006]
  3. ulala

    ulala New Member

    and there are curently no treatments. There is a blood test for it, hopefully no one has it! It can develop into leukemia.
  4. Bambi

    Bambi New Member

    online newsletter. I guess just put the National Fibromyalgia Association in the search and then go to the newsletter area. It's for this month.
    I'll try and see if it works that way too.
  5. Bambi

    Bambi New Member

    www fmaware org address. I hope it's ok to put that but they don't sell supplements or anything that I know of. Bambi
  6. elliespad

    elliespad Member

    I remember reading about the link to both these Retroviruses back in the 80's I believe. Back then, I personally knew a SCIENTIST who was developing a new drug for Rheumatoid Arthritis. It was awaiting FDA approval, I believe it began with an "R". I ran all this by him, and his comment at that time, was that IF a Retrovirus was involved, the ONLY way to treat it was to use Plaquanil, which is an Anti-Malaria drug. He said that over time, it alters the immune system. This guy was dating a friend of a friend, his name was Ravi something. This was back in the 80's so I don't remember much more.

    BUT,,,,interesting side story here. Way back when, I used to go to a support group meeting in Albany, headed by Jeanne somebody (K - something)?. I later told her about this RAVI telling me to use Quinine (Plaquanil) for Retrovirus. She didn't think much of it, or that it could be helpful. End of conversation.

    Few years later, I call her, just to catch up. She, apparently had gone to live in, I think Africa (?) and of course, had to have all the vaccines. While she was there, she DEVELOPED MALARIA. She apparently was near death, but survived, with treatment. Was it Plaquanil? I don't remember. BUT,,,she claimed that she was CURED. Now, that was MANY years ago and I don't remember all the details, but she had been VERY SICK for a LONG TIME. I asked her if she remembered me telling her about the Malaria treatment as a CFIDS treatment, and she vaguely remembered it.

    There was also a group of LYME Patients intentionally subjecting themselves to Malaria because some were claiming to be cured. I'm surprised it's never been mentioned here.

    Another guy who was heading up the Support Group, BOB somebody, was friends with one of the early researchers and was getting Ampligen. Again, I have no idea what the outcome of that was.

    Just thoutht it all interesting.


    [This Message was Edited on 12/28/2006]
  7. ulala

    ulala New Member

    cured of malaria or CFS/FM? You mentioned that she headed a support group but I didn't understand what she was cured of. Also patients exposing themselves to malaria to get the plaquenil? I wasn't sure about that either. Plaquenil IS used to treat rheumatic diseases. Read below.

    I took plaquenil for a short time but stopped because it can affect the retina and I was afraid of that because I already have enough eye problems. Thanks!


    Plaquenil etc. (Hydroxychloroquine)


    Plaquenil (Hydroxychloroquine) is an anti-malarial drug that is also helpful for rheumatic diseases such as Lupus and Rheumatoid Arthritis. Plaquenil is sometimes used by CFS / FMS patients when there is severe muscle and joint pain - though it must be considered something of an experimental treatment approach.

    The use of anti-malarials for rheumatic diseases began in 1890, when European doctors who prescribed quinine for malaria noticed a positive effect in patients with systemic lupus erythematosus (SLE). In the 1940’s, arthritis patients who took a new synthetic anti-malaria pill called chloroquine reported reduced symptoms. Unfortunately, serious eye problems related to the size of the daily dosage limited chloroquine’s use.

    In the 1960’s Plaquenil (Hydroxychloroquine) was introduced, and it has been shown to have less potential than chloroquine to cause retinal toxicity. However appropriate monitoring of the eye by a medical eye specialist familiar with anti-malarial side-effects is essential.

    How anti-malarials work for arthritic diseases is not completely understood, though they may act to disrupt the autoimmune reaction which mistakenly targets the cells, tissues, and organs of a person's own body.

    Compared to other disease-modifying antirheumatic drugs (DMARDs), Hydroxychloroquine does not create significant liver toxicity and doesn't require frequent blood monitoring.

    Unfortunately, its overall effects also appear to be less dramatic, and it is usually recommended for early, mild to moderate SLE. Additionally, it is often combined with other DMARD drugs like Methotrexate to increase its effectiveness.



    [This Message was Edited on 12/27/2006]
  8. ulala

    ulala New Member

    Artemesinin is used to treated parasites and is used to treat Lyme. I'm not sure what the action of Plaquenil is vs. Artemesinin. Maybe someone else who has used it will give some input.
    [This Message was Edited on 12/27/2006]
  9. fight4acure

    fight4acure Member

    thanks[This Message was Edited on 03/26/2007]
  10. Bambi

    Bambi New Member

    subject. It was completely new to me as is the info about the various drugs used. I did look as much up as I could and everything "I" found said there was NO current treatment, which wasn't at all encouraging.

    I will watch with interest any more posts. Bambi
  11. elliespad

    elliespad Member

    Yes, this woman headed up the Albany, New York CFIDS Support Group. She later went to live in (I think it was) Africa, and contracted Malaria. Lived through that and years later when I spoke to her, was also CURED of her CFIDS ! It's probably been 5-10 years since I've contacted her and have no idea if she still considers herself cured. SHE did not relate her CFIDS cure to the Malaria treatment, or Malaria disease process. Her only guess, was that her boyfriend and her, who were living there for HIS business, and basically lived like ROYALTY with every need provided for. Even personal conveniences were tended to for her, with servants.

    I then reminded her of my conversation with her years previously, about the Malaria drug treatment, and she casually remembered it, but still didn't suggest that it was related to her cure.

    Now MY hypothesis, is that the PROFUSE sweating, which results from Malaria may have DETOXED her and contributed to her CFIDS healing.

    And the group that was INTENTIONALLY contracting Malaria, I believe in Mexico, was a group of LYME patients. This was told to me by Jeanne, the woman who headed up the CFIDS Support Group. Was more of an afterthought, since I had told her about the Malaria connection.