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Author Topic: I'm Back  (Read 2133 times)

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Offline OzPaul

  • Member
  • Posts: 410
  • a very blessed 29 year ltnp
I'm Back
« on: June 04, 2006, 10:14:21 AM »
Hey everybody

I'm back in New Mexico from my trip to Boston. I was there for a second time to participate in the Long Term Non Progressor (LTNP) study at Harvard/MGH. For those who don't know I've been positive for at least 21 years ( likely 25) and blessed with great health. That's why I'm in this study and another at NIH ( Zephyr and I will meet there in 13 days !!!!!) as well as a study in Sydney.

 On Friday I met with Bruce Walker who is head of the research program about LTNP's at Harvard/MGH. He's such a kind and gracious man. Not much news at this point , but one thing of note. I (and Zephyr ) are termed 'elite controllers' i.e. undectable viral load for duration of infection, no HIV meds, no OI's, normal T-cells ( Zephy has super T-cells ) for 7 years or more. It had been thought that we 'elite controllers' were .5% of HIV poz folks. Bruce says that they now believe that we actually represent 1 in 300 hiv poz people !!!. In other words, of the 600,000 (tested poz) folks in the USA there are roughly 2,000 'elite controllers' stateside.
The aim of this study is to unlock the mystery of why we exist and hopefully, in time develop a theraputic vaccine ( no more pills ) or possibly a cure.
Bruce Walker and team are shaking every bush and tree to find more of us for their current study (so far there are 200 they would like 1,000 including from overseas). If you or someone you know may qualify for the study here is a link they can check out with contact info.

 http://www.mgh.harvard.edu/aids/hiv_elite_controllers.asp

They have also opened the protocol to some poz folks who have had some viral load.

Check it out !!!

In 13 days Zephyr and I head out to the NIH (she from Calif. me from NM) in Bethesda, Maryland to take part in their study. This will be my third visit and Zephy's second. At long last we get to meet  !!! We were first introduced nearly one year ago. We're like two kids at Christmas, excited with expectation and glee !!! You gotta love the cyber world. Our global AM family, well I'm thrilled to be amoung you all

Cheers
Paul

Offline heartforyou

  • Member
  • Posts: 1,105
  • I must be a survivor in many ways...
Re: I'm Back
« Reply #1 on: June 04, 2006, 10:30:01 AM »
Paul,

I am thrilled to read about your experiences....and a bit jealous of the LTNP part as well.
Sighhhhhhhhhhhhhhhhh

But you deserve it and you're using it to find out more about the why's and how's.

hug

hermie
Who packs a huge hug for Zeph to be delivered to her when you guys meet
Diagnosed in 1987 and still kicking
Viread, Kivexa (Epzicom),Viramune once daily

Happiness is the freedom of breathing fresh air every day.

Offline zephyr

  • Member
  • Posts: 459
    • Zephyr L.T.N.P. Foundation, Inc.
Re: I'm Back
« Reply #2 on: June 05, 2006, 12:40:07 AM »
Hi Paul!!

Even though we shared a wonderful talk on the phone earlier today, I still wanted to chime in and tell you I'm glad you are returned safely to New Mexico after your trip back East!!  Now your pint of blood and mine are frozen away in the 'Blood Bank' for use by all researcher's around the world who are interested in folks like us. Isn't that something? Almost science fiction-like, isn't it?

I'm glad you stayed the 'extra' day to catch up to Dr. Walker. I enjoyed meeting him back in December...and you are so right, he is a very gracious man. Busy, committed, and generous with his time for us. I knew as soon as I met him that you and I were in 'good hands'...and, when I saw that bulletin board just outside his office, on the hallway wall, pictures of at least forty scientist's devoted to studying us, well, representing so many countries in our world...truly a sight to see!

Perhaps in the future, it will be our good fortune to combine our Boston re-visits. One never knows.......it would be terrific to trip around that town with you, I think! You could show me the Art Museum you went to!

Thank you, my dear, for your travels from your distant country of Australia. I shake my head in wonder at the 14,000 miles you flew to donate that pint! Incredible.

And, I smile at the way this group in Boston connected us with one another, via tentative emails at first, curious, halting, and before we knew it, we were speaking like we had always known one another.......I just think it's an amazing thing, and I know my life will never be the same.

10 days, and counting, my brother. Now they seem to be passing too slowly!!

With love,

Zephyr :-*

"It is character that communicates most eloquently."

 


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