Discussions By Condition: Infectious diseases

HTLV/1 vaccine?!?!??

Posted In: Infectious diseases 18 Replies
  • Posted By: Anonymous
  • November 28, 2006
  • 02:49 AM

I'm doing a fact sheet for school, and I was wondering if there were any vaccines for it. Other fun facts would be appreciated.

Thanks

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18 Replies:

  • The best treatment so far is Vidaza (Azacytidine), which apparently cured a patient in Greece after 8 months.
    AlvinBishop 36 Replies Flag this Response
  • Has anyone with Tropic Spastic Paraphersis-TSP-HTLV-1/2 found any doctors that could shed some light as to how long it takes to get this disease and if is from blood transfusions. Are there any worthwhile specialist in Florida? I believe I have had this disease dormat or many years ubtil I found out in 1992 from blood work, but no one believed me until about a 11/2 years ago. Blood was not tested in 1966 andI received 3 bloodfusions then in the military. The medical board has turned me down for 100% disability. I am in need of acivilian doctor that has a lot of knowledge about this disease to help me. Leave a message on this board if you know someone in Florida or anywhere close. Darcies Spirit Guide
    Darcies Spirit Guide 3 Replies Flag this Response
  • Darc,Yes, HTLV can be transmitted via blood transfusion. Doctors that know enough about HTLV are hard to find, but you might have an easier time finding one in Florida, since it's closer to endemic areas for HTLV (Carribean and South America). Besides the Vizada cure that I mentioned, you can take Fucoidan supplements to help alleviate symptoms. There's ongoing research in Japan (where this is also a big problem), where they have recently approved a drug called KW0761. The problem with all of these remedies (except for Fucoidan, which is over the counter), is that they are not administered unless you are near death. That type of "treated if only near death" approach was what was done with HIV in the eighties, and it's ridiculous and inhumane to say the least. Anyone who has such a terrible disease wants treatment IMMEDIATELY, not on the death bed. Please go to the HTLV help site and sign the petition(s) asking the government, and post in the forum.Best wishes.
    AlvinBishop 36 Replies Flag this Response
  • PS: There was a vaccine in 1997 by a company called Virologix, but they got bought out by Access Pharmaceuticals and it disappeared - no conspiracy theory there. I guess 35 million people suffering with this wouldn't want a vaccine, right?
    AlvinBishop 36 Replies Flag this Response
  • Hi Alvin: Thanks for the information about the Fucoidan. I have researched this state of Florida and even the Neurologist don't really have a clue. I am on a quest to find someone to help. I am taking infusions that are also used for MS, but after one year I am having more problems. I went to give blood in 1992 and was told I had AIDS. I knew I didnt have AIDS. I went to get a job at a blood bank a few years ago and I didn't get hired because of this disease. I have not worked in over 5 years. How are you doing? I have some good days, but a lot of days aren't so hot. Thanks for listening Darcie.
    Darcies Spirit Guide 3 Replies Flag this Response
  • Darcie,Thanks for being the first person to ever reply to me on this site! Sadly, governments and doctors are in the dark about HTLV, which is why I asked you to visit the HTLVhelp site and sign the petitions there. You can buy Fucoidan over the counter, Swanson Vitamins sell it for example. Unless you have a close friend or relative who is a doctor who is willing to prescribe azacytidine off label, you won't be able to get that treatment. Ironically, many people confuse HTLV for HIV, and at the same time, they don't give a flying **** about HTLV - I don't know about you, but that makes me angry that an entire society could ignore the people suffering with a disease and not try to treat or cure it - people in the eighties with HIV were mistreated and neglected the same way, so in that sense, this is the new HIV of our time and we are being similarly mistreated and neglected. Please, please, please sign the petitions for HTLV and get everyone you know to sign as well - we need government recognition of this disease before everyone gets infected. We also need recognition of this disease by the drug companies so that clinical trials of drugs that can treat HTLV can being (azacytidine, CP-4200, etc.).Best,George.
    AlvinBishop 36 Replies Flag this Response
  • Hi Alvin: I need to know where to find this petition for HTLV. I will gladly sign it and I can get family members like my son and all of his family to sign. I also have a good friend that uses the computer that will sign t to help out. I will try the product that you mentioned. I read one of the other threads on this disease that said in Japan they use the Shitaki Mushrooms to help with this disease also.I am really very upset by all of this. I found out in the early 90's that I ad this and no one knew what to do about it, so all of these years I have been having plenty of problems and no help until now when it has progressed now that the treatment I receive doesen't do much. It is sad that they are treating this like HIV. It is to bad that others are not talking about this, because forums help when all confer. Only 2 to 5 percent of the people who have this disease have the problems we are going through, so this is considered a rare disease. Write soon and I will write back. Darcie
    Darcies Spirit Guide 3 Replies Flag this Response
  • HI everyone, i am new to this forum. I am here caz i'm having problems for the past months. Can anyone here tell me if it's possible to have symptoms as soon as a week after an exposure? The first symptom was a terrible abdominal pain after a meal. My girlfriend who is displaying symptoms had that same experience after eating. Later we both develope some bumps on our faces and behind the neck.I anticpate any response from anyone. Thanks in advance.
    Anonymous 42789 Replies Flag this Response
  • Hi everyone, i am new to this forum. I am here caz i'm having problems from the past couple of months, 8 to be exact. Is it possible to see symptoms of HTLV as early as a week after the exposure? The first symptom was a bad abdominal pain after a meal one day. My girlfriend has experienced the same abdominal after a meal as well. We both get a huge bump on the side of our face. I'm having muscle pain in my legs, burning skin sensation, abdominal pain on the left side, joint pain, and more. I look foward for a response. Thanks in advance.
    Anonymous 42789 Replies Flag this Response
  • Darcie,I don't know if this forum allows other sites to be mentioned, but there's a site called site called SignOn dot Org that contains the three petitions that I mentioned - please do your best to get everyone you know to sign the petitions. I will include the links to the petitions in a separate post in case they get censored by this forum.Ustas,I also experienced the huge bump on the side of the face, and the muscle pain in legs, burning skin sensation, abdominal pain, joint pain, etc.Best wishes.
    AlvinBishop 36 Replies Flag this Response
  • Ustas, Yes I also have huge bump on the side of the face, and muscle pain in legs, burning skin sensation, abdominal pain, joint pain, etc. Don't let anyone tell you that you're crazy.Darcie,Please get as many people as you can to sign the petition - we need to make this problem known so it can be dealt with. Thank you very much for all of your help!Best wishes.
    AlvinBishop 36 Replies Flag this Response
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  • Ustas, Yes I also have huge bump on the side of the face, and muscle pain in legs, burning skin sensation, abdominal pain, joint pain, etc. Don't let anyone tell you that you're crazy.Darcie,Please get as many people as you can to sign the petition - we need to make this problem known so it can be dealt with. Thank you very much for all of your help!Best wishes.
    AlvinBishop 36 Replies Flag this Response
  • Ustas, Yes I also have huge bump on the side of the face, and muscle pain in legs, burning skin sensation, abdominal pain, joint pain, etc. Don't let anyone tell you that you're crazy.Darcie,Please get as many people as you can to sign the petition - we need to make this problem known so it can be dealt with. Thank you very much for all of your help!Best wishes.HTLVhelp / Facebook HTLVhelp / Twitter HTLVhelp / Google+ HTLVhelp / YouTube HTLVhelp / www
    AlvinBishop 36 Replies Flag this Response
  • Ustas, I also experienced the large bump on face that you & your girlfriend have.Best wishes. HTLVhelp / Facebook HTLVhelp / Twitter HTLVhelp / Google+ HTLVhelp / YouTube HTLVhelp / www
    AlvinBishop 36 Replies Flag this Response
  • The best treatment so far is Vidaza (Azacytidine), which apparently cured a patient in Greece after 8 months. Do you have any more information on Vidaza. Is it available here in the USA?
    Donmiguel 6 Replies Flag this Response
  • Darc,Yes, HTLV can be transmitted via blood transfusion. Doctors that know enough about HTLV are hard to find, but you might have an easier time finding one in Florida, since it's closer to endemic areas for HTLV (Carribean and South America). Besides the Vizada cure that I mentioned, you can take Fucoidan supplements to help alleviate symptoms. There's ongoing research in Japan (where this is also a big problem), where they have recently approved a drug called KW0761. The problem with all of these remedies (except for Fucoidan, which is over the counter), is that they are not administered unless you are near death. That type of "treated if only near death" approach was what was done with HIV in the eighties, and it's ridiculous and inhumane to say the least. Anyone who has such a terrible disease wants treatment IMMEDIATELY, not on the death bed. Please go to the HTLV help site and sign the petition(s) asking the government, and post in the forum.Best wishes.Thank you for the information.
    Donmiguel 6 Replies Flag this Response
  • Ustas, I also experienced the large bump on face that you & your girlfriend have.Best wishes. HTLVhelp / Facebook HTLVhelp / Twitter HTLVhelp / Google+ HTLVhelp / YouTube HTLVhelp / wwwI got tested for HTLV and my Dr. said it came back negative. My girlfriend and i are still experiencing symptoms. I am confused.
    Anonymous 42789 Replies Flag this Response
  • Hello Alvin,I did my HTLV test at 7 months. In your opinion, or experience, do you think that a negative result at this point is conclusive? At what point (months) did you have your test done? I've not yet gotten an answer from someone who is infected, so i'd be greateful for your answer.I anxiously awaits your response.
    Anonymous 42789 Replies Flag this Response
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