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Certain HIV positive, but negative tests (Page 17)

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May 31st, 2012
Experienced User
Also request Predident Obama on whitehouse site to recognise HTLV as a serious health concern for the world and help seek HTLV attention on international medical community for vaccine development.
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replied May 31st, 2012
Extremely eHealthy
Good idea you had there to petition the White House & Presid
AdviseMe,

Good idea you had there to petition the White House & President! The online petition for HTLV is going to the same places as soon as enough people sign it (50 total).

Thanks for your help / HTLVhelp
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replied May 31st, 2012
Experienced User
Hey Scared, if you really want to find out what's wrong with you, go to a blood bank where you live. They test6 for everything, HIV, AND HTLV are the two main things that they test when you donate. They test for everything. That's what I may end up doing myself. I was in so much pain last night that it felt like my insides were about to burst, and the pain went all around to my back. So far out of 15 months, that was the worst pain so far. I also got sick 2 days ago.
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replied May 31st, 2012
Experienced User
Hopefully we get someone to help us to take HTLV seriously.
Get some sort of vaccine developed to help millions of people suffering from this virus.
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replied May 31st, 2012
Extremely eHealthy
Dalton,

Multiple people have advised Scared that blood donation should NOT be used to test for this. Would you really want another person to be as miserably sick as you have been for 15 months? Keep your illness between you & your doctor, please don't spread it through the blood supply.

AdviseMe,

I agree that something has to be done about HTLV, the face book page for HTLVhelp quotes one doctor that HTLV isn't even on the "neglected diseases" list, that's how badly it's ignored - that's really bad! Either there needs to be a curative vaccine or antiviral drug that will cure HTLV, as has been done for Hepatitis C. But if they don't even acknowledge HTLV, how will they ever cure it?

Best wishes / HTLVhelp
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replied May 31st, 2012
Experienced User
Thats is the problem, no one recognises the HTLV as a serious disease.There is very few or far less study on these virus for vaccine development.Most of these study were done on animal model and one article reads it was sucessfull, then why isint that applied on human beings and start clinical trials.
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replied May 31st, 2012
Experienced User
Reaserch is done on managing the disease due to HTLV, HAM/TSP and ATL which hasent been sucessfull till date.
Why cant there be any vaccine or antiviral drug to reduce or supress the viral load, which means people infected will not develop any complications if the viral load is supressed.
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replied May 31st, 2012
Extremely eHealthy
AdviseMe,

Yes, that is the problem, no one recognizes HTLV as a serious disease. The only way that is going to change is that many people need to petition and protest for change. That's what people with HIV did in the early eighties and that's why we have thirty drugs to treat HIV today. If we can't even get fifty people to sign a petition for HTLV, how is anyone ever going to seriously tackle HTLV ???

Best wishes / HTLVhelp
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replied May 31st, 2012
Experienced User
U all guys worry for nothing. Non of you will end up with htlv pozs
Its really hard to transmated. Yes i know its serious but its very rare
3 months is window perios for htlv. Thats what uk htlv experts says
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replied May 31st, 2012
Experienced User
00 44 20 3312 1521 this is uk htlv experts number ring and get proffesionel advise
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replied May 31st, 2012
Experienced User
and plus htlv dont have symptoms for years ...at least 15 years ....so ur symtoms noting to do htlv....as htlv symptoms dont show that long....
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replied May 31st, 2012
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adviseme,

Exactly what you said is what is needed - vaccine or antiviral drug to reduce or suppress the viral load. Those things exist now, but they're sitting on a shelf instead of being used on people. Virologix had a HTLV vaccine 15 years ago, why isn't that being used? BMS-345541 and Purvalanol-A reduce viral load, why aren't they being used? Azacytidine cured a patient in Greece after 8 months, why isn't that being used? That's the true irony of HTLV, the treatment exists, but no one is using it!

uk_Worry,

If you want to continue to tell people on this forum that their problem is not HTLV, and it's only rarely serious, and it's hard to transmit, and its window period is short, you have that right. But for the rest of us who had one time sex, and are suffering with this outside of the window period, and feel like we are dying, we respectfully disagree with you.

Best wishes / HTLVhelp
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replied May 31st, 2012
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uk_Worry.

Thanks for the number for your specialist - if he's willing to inject my blood into his body then I will certainly believe that he's an expert. Otherwise, he's of no help to us.

Best wishes / HTLVhelp
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replied May 31st, 2012
Experienced User
there is a big hospital in london and do htlv only... thats where i get my info from]

and why r u disagree with me ?

HTLV symtoms dont last very long untill late stage.....
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replied May 31st, 2012
Experienced User
and im here for to help you guys..just dont want u all stress and get on with life...

its your opinion
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replied May 31st, 2012
Experienced User
tonny what was risk ?and how long u been haveni symtoms ?
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replied May 31st, 2012
Extremely eHealthy
Uk_Worry,

I was talking to a lady on the Wise Geek page who is staying at that hospital in London for the past four months, she has no use of her legs, nice way to live, right?

I am not disagreeing with you directly, I am disagreeing with the doctors who provided you with the information. Ustas, AdviseMe, myself and others are very sick with this, and we are all recently infected. Since we all have the same symptoms, and they are all classic symptoms of HTLV (dermatitis, bladder problems, uveitis, aveolitis, etc); why are you focusing on the symptoms for 15 years from now? Yes, everyone knows that paralysis and cancer can result decades from now, but we are having the OTHER symptoms that I listed now!

Best wishes / HTLVhelp
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replied May 31st, 2012
Experienced User
why dont u do confirmation test on htlv ?
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replied May 31st, 2012
Extremely eHealthy
Because I already spent six thousand dollars on testing.

Is a test going to make me feel better? No.

Are Ustas or AdviseMe going to feel better after they get tested? No.

That's why testing has to stop at some point, because at some point it becomes pointless. None of us have HIV, but we're miserably sick. As Mr. Sadowsky of TheBody page wrote, some people NEVER test antibody positive for HTLV. Furthermore, as Doctor Wohl replied to me on the same site, testing for HTLV has no purpose because no treatment exists - what nice logic.

Best wishes / HTLVhelp
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replied May 31st, 2012
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Scared,

You're right about the frustration with:

(1) Knowing something is not right with your body.
(2) Testing multiple times for everything.
(3) Doctors telling you to see a psychiatrist.

However, you're wrong to donate blood - we all know that some thing is wrong with us, and multiple people agreed that donating blood is the wrong thing to do.
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replied May 31st, 2012
Experienced User
tony....

ok say ur blood dont show htlv...how comes everyones blood dont show as well ??

thats not possible
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