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Blood disorder HTLV II

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Unread 11-13-2010, 04:27 PM   #1
hollymm
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Join Date: Nov 2010
Posts: 13
Default Blood disorder HTLV II

I'm looking for someone who has the same blood disorder as listed in the title, HTLV II. I have other immune conditions and would love to trade notes on what you're going through and what kind of doctors you've seen.
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Unread 04-24-2012, 05:59 PM   #2
tonydewitt
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Join Date: Apr 2012
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Default Htlv

Quote:
Originally Posted by hollymm View Post
I'm looking for someone who has the same blood disorder as listed in the title, HTLV II. I have other immune conditions and would love to trade notes on what you're going through and what kind of doctors you've seen.
Holly,

I share you interest, and you would be interested to know that a patient in Greece was treated with 8 months of Vidaza (Azacytidine) and was apparently cured of the virus. This information is somewhat forbidden because HTLV is supposed to be a rare, obscure disease that does not warrant treatment. No one would consider 35 million people infected (including half a million Americans) to be rare nor obscure, and anyone with this would not agree that it does not warrant treatment. Feel free to contact me if you have any other questions.
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Unread 01-31-2013, 10:29 PM   #3
AZHorseLover
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Join Date: Jan 2013
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Smile I was just diagnosed with HTLV and am interested in Vidaza.

Quote:
Originally Posted by tonydewitt View Post
Holly,

I share you interest, and you would be interested to know that a patient in Greece was treated with 8 months of Vidaza (Azacytidine) and was apparently cured of the virus. This information is somewhat forbidden because HTLV is supposed to be a rare, obscure disease that does not warrant treatment. No one would consider 35 million people infected (including half a million Americans) to be rare nor obscure, and anyone with this would not agree that it does not warrant treatment. Feel free to contact me if you have any other questions.

Am new to this site, so please forgive the learning curve. Where can I find more information about HTLV? I really want to know how to take better care of myself. Probably got this from a blood transfusion 35 years ago. Yikes! Many thanks for any help you can give me.
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Unread 03-11-2013, 03:30 AM   #4
Definatelyworried
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Default

Hey azhorselover are you still there. I know where you could find a lot of information about htlv, specially since you have been diagnosed with it. Please reply if you are still interested.
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