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Author Topic: Harvard LTNP journey  (Read 8129 times)

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Offline OzPaul

  • Member
  • Posts: 415
  • 40 year, Long Term Survivor/LTNP
Harvard LTNP journey
« on: May 31, 2006, 05:29:19 pm »
Continuing a thread from the old site. I'm in Boston as part of the Harvard/MGH Long Term Non Progressor study. For those folks who don't know, I was tested positive in 85, though likely seroconverted in 81. I've been bvlessed with vibrant health ever since without medication. This is my second visit as a member of this study. Today I had my basic blood draw. Tomarrow at 8:30 I will give my blood donation (one pint) and then on Friday I will meet with Bruce Walker of Harvard/MGH who is the lead investigator and considered one of the leading LTNP researchers in the world.
Something very noteworthy that I found out about me last year at the NIH is in regards to the HLA testing they did on my blood. It's been shown that HLA B57 is highly protective against HIV and often occurs in LTNP's. Additionally it has been determined that HLA B35 is associated with rapid disease progression. To the amazement of the NIH researchers I have the bad HLA ( B35) and not the good HLA (B57)  !!! According to their theories I have a most amazing outcome. They had not come across another LTNP like me before.
I hope to learn more on Friday when I meet with Bruce Walker. I'll keep you all posted.

Peace and Love

Offline Lou-ah-vull

  • Member
  • Posts: 1,029
Re: Harvard LTNP journey
« Reply #1 on: May 31, 2006, 05:36:52 pm »
How fascinating!  If you are going to be unique in something, it might as well be something as good as this!  I know you will keep us posted.  Thanks.

Gary  :D
Diagnosed Oct. 2005
10/05:  367 (26.2%), 24556 VL
01/06:  344 (24.6%), 86299 VL
04/06:  374 (22.0%), 87657 VL
05/06:  Began HAART 05/15/06, Combivir/Kaletra
07/06:  361 (27.8%), 1299 VL
10/06:  454 (32.4%), 55 VL
01/07:  499 (38.4%), UD
02/07:  Switched to Atripla 2/8/07
04/07:  566 (37.7%), UD
08/07:  761 (42.3%), UD
06/08:  659 (47.1%), UD
01/09:  613 (43.8%), UD
07/09:  616 (47.4%), UD
01/10:  530 (44.2%), UD
07/10:  636 (48.9%), UD
01/11:  627 (48.2%), UD
07/11:  840 (52.5%), UD
01/12:  920 (51.1%), UD
07/12:  857 (50.4%), 40
10/12:  UD
01/13:  710 (47.3%), UD
07/13:  886 (49.2%), UD
01/14:  985 (46.9%), UD
06/14:  823 (47.2%), UD
01/15: 1366 (45.2%), UD
07/15: 1134 (50.7%), UD
02/16: 1043 (55.1%), UD
08/16:  746  (55.4%), UD
08/16:  Switch from Atripla to Genvoya

Offline Eldon

  • Member
  • Posts: 2,664
Re: Harvard LTNP journey
« Reply #2 on: June 01, 2006, 01:13:01 pm »

Keep us posted on the happenings in Boston.

Offline allopathicholistic

  • Member
  • Posts: 3,258
Re: Harvard LTNP journey
« Reply #3 on: June 01, 2006, 05:33:06 pm »
To the amazement of the NIH researchers I have the bad HLA ( B35) and not the good HLA (B57)  !!! According to their theories I have a most amazing outcome. They had not come across another LTNP like me before.

That sounds SUPERB. Do you have a personal hypothesis as to why this is?

Offline OzPaul

  • Member
  • Posts: 415
  • 40 year, Long Term Survivor/LTNP
Re: Harvard LTNP journey
« Reply #4 on: June 01, 2006, 06:30:24 pm »
Hey everyone

I had my blood draw today. I gave them one pint of blood. It's then taken across the Charles River to the research center where they look at it while it's at it's most active state (fresh).
The draw went well and I didn't feel faint for a change. I got back to the hotel and crashed for a few hours. I'm not sure why but these ( NIH too) procedures/blood draws really take it out of me. Tomarrow I meet with Bruce Walker to talk about my particulars and if they have made any interesting/valuable findings. He is a very kind and gracious man and truly appreciates all of the cohort participants participation.
I have had many theories as to why I'm what  is called an 'elite non progressor'. Sprituality, visualization, meditation, diet, exercise, genetics but in the end I have no real firm idea why me. I do feel very humbled and very blessed to be so fortunate.
I was in NY City in 1981 when, as a young ballet dancer, many men I knew were falling sick. I too had an intense ill period ( 2 weeks) that I was able to overcome. Now, it's 25 years later. I actually made it to middle age ( well, 47 years). I hope and pray that my participation (and others) in these various research projects will help unlock the medical mystery and help find the way to a vaccine, perhaps even a cure. That's why I do these cohorts.
In two weeks today Zephyr and I will meet in Bethesda at the NIH for that LTNP cohort. Minh has kindly offered to act as our guide and escort. Thanks Minh !!!!
I'll continue this post with any news I find out from my meeting with Bruce Walker.


Offline zephyr

  • Member
  • Posts: 457
    • Zephyr L.T.N.P. Foundation, Inc.
Re: Harvard LTNP journey
« Reply #5 on: June 01, 2006, 07:43:01 pm »
Dear Paul....

You are, in one word, AWESOME!!


"It is character that communicates most eloquently."

Offline TedEBearNC

  • Member
  • Posts: 263
  • ~Cuddly~
Re: Harvard LTNP journey
« Reply #6 on: June 01, 2006, 09:46:08 pm »
^^What she said. 

That is truly amazing!

Member since March 2004


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