EliteControllers.org

[bear60]

I am finally, after months of negotiations, going to have blood drawn for this study.  Seems they had to negotiate with my doctor's office to compensate them for the blood draw and shipping.
I urge anyone who has been HIV positive for a long time and not needed meds to become involved in this study.

[OzPaul]

Hey Bear60

That's great news that you qualify for the study and that everything has been co-ordinated so you can participate !!!

For anyone wanting to more about the study here's a link

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

Cheers
Paul

[J.R.E.]

Hello Bear,

Thats great news !! I remember all those past years of living with this virus, and living healthy... I wish I could have gotten myself into that type of study years ago. All my friends were always amazed throughout so many of those years that I was always in such good health.  I remember them saying, you should "find out why your not getting sick". They used to say how "lucky"  I was.( I hated that ) I said luck had nothing to do with it. Genetics and deciding on better health choices contributed, after that first year of recklessness, after diagnosis !! Those same friends were also quite shocked, when I took such a downward turn in 2002-2003.Thats when a second round of denial hit ! Anyway, 39 months of taking meds, makes  that seem like a long time ago.

Glad to hear you got yourself involved with the study !! You will have to keep us updated !!


Take care-------Ray

[bear60]

Ray....I have been trying to find a study like this since the 90's......after I finally decided I was a LTNP.  I am very disappointed that no one here in Philadelphia is doing an elite controller study.  I mean we have the Wistar Institute and the Univ of Pa, etc etc.

[markporter]

Ray....I have been trying to find a study like this since the 90's......after I finally decided I was a LTNP.  I am very disappointed that no one here in Philadelphia is doing an elite controller study.  I mean we have the Wistar Institute and the Univ of Pa, etc etc.

Hi All,
I've read of two LTNP studies on the forums so far, one in California, the other in Massachusetts...are those the only LTNP studies currently being done?  I've tested+ in 1986, no meds since then, undetectable VL (<75) since test was available, last CD4 @ 745.  Healthy otherwise and curious what's being done with LTNPs.
mark.

[oaktree]

NIH in Bethesda has a study. Mary McLaughlin 301 435 8001 or mm149t@nih.gov

[bear60]

Oaktree
Thanks for the information

[emeraldize]

Hi Bear

Beyond the LTNP-type studies, at the NIH, many of the same attributes you have will work with other studies needing treatment-naive subjects who meet the CD4/VL requirements. Please look for my post (around November?) in this forum that called for just a few more subjects for the Alethia study. THey may still be recruiting. It does require multiple visits to the NIH. You'll be eligible for more studies along the way, it just might not be specifically about LTNP status. And, you have to wait six months in between NIH studies. The next one I'll participate in requires a muscle biopsy. THen, six months later, I'll be signed up for yet another study.

Em