Ltnp/Elite Controller

[OzPaul]

Hi everyone-

It’s been a very long time since I posted last.

I’d like any information or links to recent research studies regarding ltnp’s and Elite Controllers. As a 35 year EC, I’m enrolled in several international studies investigation the EC phenomenon.

Also, I’m keen to particiapte in other ltnp/EC studies who are still recruiting, especially international study participants. I’m currently enrolled in Bruce Walker’s Boston EC study, the NIH ltnp study, and the Kirby Institite ltnp study in Sydney, Australia. I live in Australia.

I’m blessed to be well on the hiv front, and still not on ART, though it seems that some research indicates starting ART, might be advisable.

Thanks !

[Tinman66]

Hey OzPaul,

I'm also in Bruce Walkers study. It's hard to believe I've been participating for about twenty years. I live in Maine, diagnosed in 1987. Still remain healthy and undetectable without medication. If you haven't checked in with them lately, there is a new study I learned about there. It requires a limph node biopsy, I'm considering it.

One of the things that I was told a while back when I inquired about how long they thought I'd remain healthy was "You're going to survive HIV long enough to die from something else." I had to laugh, it was oddly comforting. Last year I survived colo-rectal cancer, and while I'm happy to be alive, the cancer surgery changed my life in ways that have brought back similar feelings from when I was first diagnosed. I'm lucky to have a loving, supportive husband. We're both in the process of making adjustments, I'm confident we'll get there. 

I just happend see something about the POZ forum, glad I signed up. Thanks for starting this thread.

Be well, Charles (Timan66)

[OzPaul]

Hello Charles (Tinman),

Thank you for your response on this thread. I am glad to hear you're a survivor of colo-rectal cancer, it must have been a very challenging and distressing time for you. It's reassuring to know you have a loving and supportive husband !

I was also contacted about the lymph node biopsy study in Boston. I likely would not participate due to it being a somewhat invasive procedure. I was in a study there about 10 years ago, and had  an endoscopy, which was to look at HIV in the gut, and whether I had any detectable HIV there (I did not).

I've had numerous health issues, as I approach 60, though they have been somewhat what one would expect at this age. From what I last heard from researchers, I could likely keep ticking along as an EC, and like you, something else would come along to end my life.

Before that happens, and hopefully that will not be for a while yet, I am very keen to keep participating in LTNP/EC research. It seems that from my vantage point, that there is less focus on us EC's by researchers,as a possible key to a therapeutic vaccine.

If there are any LTNP/EC researchers reading this, it would be most welcome and interesting to hear where the research stands at this time.

I wish you well, Charles, in your life in Maine, with your husband

I have a quiet life with my husband, and am still keen to participate in research, and hope this thread will promote some interest, within both the poz community and researchers as well.

Warm regards

Paul