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Author Topic: My 25th anniversary/ new numbers  (Read 2653 times)

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Offline OzPaul

  • Member
  • Posts: 410
  • a very blessed 29 year ltnp
My 25th anniversary/ new numbers
« on: June 07, 2006, 02:46:44 PM »
Hi Everyone

25 years ago this week ( 1981) I was a young ballet dancer living in NYC. I was passionate about my career and dance was in many ways my life. I fell very ill that week, high fevers, weight loss, aching etc. After a couple of weeks it passed and I was lovingly been nurtured back to health by Tim, a new boyfriend. Slowly I put back on the weight I had lost and I was  back leaping and pirouetting.

As it turned out that was likely the week I become poz (I tested poz in 85 when a first test first became available). It has been for many of us a harrowing time, scary, tragic, grief filled and for a spare few, miraculous. I count my many blessings that I am one of those miracles. During the 80's and 90's I waited for the other shoe to drop. The Grim Reaper seemed to darken my door. Yet I thrived, why ? I asked my GP about others and he had heard of some. I wanted to take part in studies yet there seemed to be none.

Last year I was told about Bruce Walker MD at Harvard who was conducting a study on Long Term Non Progressors (LTNP's). At last I thought I could perhaps be of service to a community I had so much (yet not) in common with.

I am now enrolled in 4 studies both here in the USA and Australia, my home. I  have a new dedication in my life ( I left dancing behind many years ago), helping researchers discover the reason why we LTNP's are so well for so long and if there in may lie a vaccine or cure. I participate in these studies for all my brothers and sisters around the globe, in hopes that one day we may all be HIV free or at least escape it's wrath. Also here at AM is Zephyr who is likewise passionate in her quest as an LTNP to help find answers. Zephy and I are what is termed by Bruce Walker as "elite controllers" a subset of LTNP's. We became acquainted through the Harvard study and have since become great e-mail/phone friends . Next Wednesday she and I will meet in Bethesda at the NIH for their LTNP protocols !!! We are kindred spirits along the same path. I believe we may also have a couple of other LTNP's in our AM family who are involved in research too.

I got back from Harvard last week for my second round of blood donations for that LTNP study.
My preliminary results are CD4's at 750 and % at 40. My percentage remains stable while CD 4's vary quite a bit.
I am speechless on that but thank God everyday.

If you are or may know of someone who is an LTNP here is a link to the Harvard study. They are actively seeking study participants.

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

I am deeply moved by the stories of courage, strength and spirit here at Aids Meds. I feel as though I have come home at last.

Peace and Love
Paul  (formerly known as chefpaul)

Offline OzPaul

  • Member
  • Posts: 410
  • a very blessed 29 year ltnp
Re: My 25th anniversary/ new numbers
« Reply #1 on: June 07, 2006, 03:03:46 PM »
OOPS,

I forgot the biggie which is an undectable viral load.

Paul

Offline Markmt

  • Member
  • Posts: 179
Re: My 25th anniversary/ new numbers
« Reply #2 on: June 07, 2006, 03:20:12 PM »
Hi Paul, Congratulations on your great numbers. That is just amazing. People like Zephyr and yourself may unlock the secret of new ways how to fight off this virus. Its good that scientists are taking interest in your cases. You are a blessing for all of us and you bring about alot of hope.Thank you for your on going coperation and keeping us posted.

Peace and Love to you,

mark
"Live to love and love to live."

Leo Buscaglia

Offline Sdgirl

  • Member
  • Posts: 247
Re: My 25th anniversary/ new numbers
« Reply #3 on: June 07, 2006, 04:17:08 PM »
Paul,

As I have said before on other threads, pioneers like you and Zephyr are the ones that will help to discover a cure for this virus.  Your strength, courage and tenacity to be the "human guinea pigs" is outstanding.

Thank you, thank you, thank you for making it possible for me and others like me to look forward to a future without HIV.  However I am able to support you, I am here.

xoxo

Lisa   :-*
"Our deepest fear is not that we are inadequate.  Our deepest fear is that we are powerful beyond measure.  It is our light, not our darkness that most frightens us.  We ask ourselves.."Who am I to be brilliant, gorgeous, talented, fabulous?  Actually, who are you not to be?"

Offline JohnOso

  • Member
  • Posts: 816
Re: My 25th anniversary/ new numbers
« Reply #4 on: June 07, 2006, 04:25:37 PM »
Ditto to all of the above for me too, Paul.

I find your respectives cases very fascinating, and I thank you (and Zeph) from the bottom of my heart for your participation in finding a cure.

Take care (and much respect),
John

Offline Trish

  • Member
  • Posts: 332
Re: My 25th anniversary/ new numbers
« Reply #5 on: June 08, 2006, 10:31:27 AM »
 :-* :)

THANK YOU!!!

You have my full support and love...always!

Love,

Trish :-*
"People grow through experience if they meet life honestly and courageously. This is how character is buit."  Eleanor Roosevelt

Offline zephyr

  • Member
  • Posts: 459
    • Zephyr L.T.N.P. Foundation, Inc.
Re: My 25th anniversary/ new numbers
« Reply #6 on: June 08, 2006, 12:42:45 PM »
My dear 'brother', Paul,

I have watched you start to bloom these last few months here on our Forums, and am filled with the wonder that is you.

When I think of our first personal meeting in one short week, I get all giddy!! :D

It's all we can do to travel toward these studies, full of hope, full of questions, filled with a conviction to assist these scientists to unlock the mystery of HIV.

My personal committment to these studies has been made so much stronger by having met you, and having become an active member of our Forum 'family'.  It is the many life stories shared by everyone here that has prompted me to take your advice and travel to the huge complex of the NIH, and into another serious effort to reveal the secret of 'us'.

Thank you for every kind word you've spoken to me, and for what you are sharing with us.

With love,

Zephie
"It is character that communicates most eloquently."

Offline OzPaul

  • Member
  • Posts: 410
  • a very blessed 29 year ltnp
Re: My 25th anniversary/ new numbers
« Reply #7 on: June 08, 2006, 01:47:00 PM »
Thank you Mark and Lisa, John and Trish and my beloved 'sister' Zephie  !!!!

I am so moved to have been so lovingly embraced by my new family. Tears come to my eyes, tears of joy. It is my fondest hope that the participation in these studies from myself, Zephie and others will lead us all to a better, HIV free life. It is for us and the untold, unheralded millions of others that I travel these many miles to donate my blood, of which these researchers feel may indeed hold the key. It is an honor to be able to represent us.

I toast you all and your kind, gracious and loving spirits.

Your brother
Paul

Offline emeraldize

  • Member
  • Posts: 3,365
Re: My 25th anniversary/ new numbers
« Reply #8 on: June 08, 2006, 05:57:34 PM »
Paul
Congrats on the great numbers and your safe travel to the States. As one of the "others" involved in LTNP studies, I just got confirmation today from Peggy Ueda at MGH they received the draw FedEx'd to them last night for the study. I include this to encourage those who may be eligible to participate that they, too, may be able to do it long distance. MGH sent a kit of tubes, etc. to my clinic, I "consented" myself and was able to circumnavigate any hospital approvals and/or waivers. I am hopeful to get Melissa at UCDavis to get funding to offer the same. I'd like to be able to participate in their study as well. Have fun with Zeph at the NIH.
Emeraldize

 


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