“HIV controllers” or “long-term nonprogressors" insight?

[jayorangevii]

Hey Everyone,

Does anyone have any personal experience or know of someone dealing with  this? Just wanted better understanding from a first or second hand person perspective on this and what its like besides the data that's already out there.

Any insight would be appreciated.

Thanks,
Jay

[leatherman]

as someone who recently tested positive, why would you want to know about this subject at this time? Having a recent infection means it would take at least 10-15 yrs or more without meds to even know if you were a long-term non-progressor (which is very rare, <5% of PLWH). You've already done the most important thing to manage HIV by starting meds, and starting them early at a time when you have good numbers (decent cd4 and UD). Starting meds this early in an infection greatly raises the probability of a long healthy life - well, in terms of HIV anyway. Staying healthy in general requires exercise, diet, no smoking, etc. As it is with most people on antiretrovirals, staying healthy is less about HIV and a lot more about all the other things you need to do to live healthy and grow old.

[jayorangevii]

Why wouldn't I want to know about this subject?? Wouldn't i want tot be informed and keep myself educated in all facets of HIV?

My inquiry is still valid, as my initial question stated I just want some insight for educational purposes.

[virgo313]

Have not read anyone here who are LTNprogressors. There are few in this forum that stop taking med & started again. Lots of late starters (with low CD4) like me here.

In general, most will reply with frank reply & try to avoid advise “of no need to take med”. I mean I once reply to “forget about it” when he was asking about elite controller as we do not want to them to think they can “beat hiv” by not taking med.

The only way to know if anyone is elite controller or LTNp... is stopping med for a long time.

[Grasshopper]

There used to be some LNTP's on this forum, but that's way way back. I think they started their own forum/group.

[daveR]

I believe current medical advise, even to the elite controllers is to take the meds, just like the rest of us mortals. If that is so they really do not gain much.

Regards
Dave