Welcome, Guest. Please login or register.
June 24, 2019, 06:10:54 pm

Login with username, password and session length

  • Total Posts: 745544
  • Total Topics: 62325
  • Online Today: 312
  • Online Ever: 1421
  • (August 13, 2016, 05:18:44 am)
Users Online
Users: 3
Guests: 272
Total: 275


Welcome to the POZ Community Forums, a round-the-clock discussion area for people with HIV/AIDS, their friends/family/caregivers, and others concerned about HIV/AIDS.  Click on the links below to browse our various forums; scroll down for a glance at the most recent posts; or join in the conversation yourself by registering on the left side of this page.

Privacy Warning:  Please realize that these forums are open to all, and are fully searchable via Google and other search engines. If you are HIV positive and disclose this in our forums, then it is almost the same thing as telling the whole world (or at least the World Wide Web). If this concerns you, then do not use a username or avatar that are self-identifying in any way. We do not allow the deletion of anything you post in these forums, so think before you post.

  • The information shared in these forums, by moderators and members, is designed to complement, not replace, the relationship between an individual and his/her own physician.

  • All members of these forums are, by default, not considered to be licensed medical providers. If otherwise, users must clearly define themselves as such.

  • Forums members must behave at all times with respect and honesty. Posting guidelines, including time-out and banning policies, have been established by the moderators of these forums. Click here for “Am I Infected?” posting guidelines. Click here for posting guidelines pertaining to all other POZ community forums.

  • We ask all forums members to provide references for health/medical/scientific information they provide, when it is not a personal experience being discussed. Please provide hyperlinks with full URLs or full citations of published works not available via the Internet. Additionally, all forums members must post information which are true and correct to their knowledge.

  • Product advertisement—including links; banners; editorial content; and clinical trial, study or survey participation—is strictly prohibited by forums members unless permission has been secured from POZ.

To change forums navigation language settings, click here (members only), Register now

Para cambiar sus preferencias de los foros en español, haz clic aquí (sólo miembros), Regístrate ahora

Finished Reading This? You can collapse this or any other box on this page by clicking the symbol in each box.

Author Topic: Ltnp/Elite Controller  (Read 1147 times)

0 Members and 1 Guest are viewing this topic.

Offline OzPaul

  • Member
  • Posts: 414
  • a very blessed 35 year ltnp
Ltnp/Elite Controller
« on: May 25, 2018, 05:10:06 pm »
Hi everyone-

Itís been a very long time since I posted last.

Iíd like any information or links to recent research studies regarding ltnpís and Elite Controllers. As a 35 year EC, Iím enrolled in several international studies investigation the EC phenomenon.

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

Iím 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 !

Offline Tinman66

  • New Member
  • Posts: 1
Re: Ltnp/Elite Controller
« Reply #1 on: June 08, 2018, 09:37:16 am »
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)

Offline OzPaul

  • Member
  • Posts: 414
  • a very blessed 35 year ltnp
Re: Ltnp/Elite Controller
« Reply #2 on: June 08, 2018, 07:08:34 pm »
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



Terms of Membership for these forums

© 2019 Smart + Strong. All Rights Reserved.   terms of use and your privacy
Smart + Strong® is a registered trademark of CDM Publishing, LLC.