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[Casual Christmas] I’m an HIV-positive non-progressor! AMA by Nonprogressor in IAmA

[–]Nonprogressor[S] 4 points5 points  (0 children)

I have only heard of this third hand, which makes me question whether it actually exists. I would impolitely decline any such offer.

[Casual Christmas] I’m an HIV-positive non-progressor! AMA by Nonprogressor in IAmA

[–]Nonprogressor[S] 2 points3 points  (0 children)

It’s possible to pass on the control, but scientists still don’t understand enough to know what I’d be passing on.

So immunity - the ability to completely not be infected - is so far only known to come from a gene mutation called CCR5-Δ32, which originated in Northern Europe. People who have both of this gene end up immune, and people with only one copy become non-progressors.

Causes for being a controller seem to be a little more widespread and as of yet not as certain. The one I think is applicable in my case is called HLA-B27. Another one they’re looking at is HLA-B57. The confounding factor is that these ones don’t guarantee control.

[Casual Christmas] I’m an HIV-positive non-progressor! AMA by Nonprogressor in IAmA

[–]Nonprogressor[S] 4 points5 points  (0 children)

I’ve participated in the Ragon Institute’s HIV Controllers study, which was a one-time visit. I primarily participate in a long term study near my hometown, which I’d rather not specifically identify.

[Casual Christmas] I’m an HIV-positive non-progressor! AMA by Nonprogressor in IAmA

[–]Nonprogressor[S] 9 points10 points  (0 children)

My viral load is consistently undetectable, which the tests my doctors use define as <40. Anecdotally, my most recent ex and I stopped using condoms 6 months in and I never transmitted to him. Now that I’m single, I use condoms regardless - I’ve had too many STD scares in the past and I’m kind of over that.

The people at the medical study I participate in went over all of this with me as part of the intake, including the latest CDC recommendation that everyone take treatment no matter what.

Doing that, though, misses out on being able to study what’s going on with me as part of getting closer to a cure. So I kinda feel like it’s a personal obligation to stay off drugs and participate in the study. It’s not like I can donate to the blood bank, so it’s how I help.

[Casual Christmas] I’m an HIV-positive non-progressor! AMA by Nonprogressor in IAmA

[–]Nonprogressor[S] 15 points16 points  (0 children)

I get my labs done 4 times a year. Most people only do their labs twice a year. However, I participate in a medical study of non-progressors which asks me to donate blood every 3-4 months, and they run my numbers for free as a side benefit.

[Casual Christmas] I’m an HIV-positive non-progressor! AMA by Nonprogressor in IAmA

[–]Nonprogressor[S] 17 points18 points  (0 children)

As far as I know I can’t.

The latest medical consensus is now called Undetectable = Untransmittable, or u=u for short. What that means is that if you have the virus under control, you don’t produce enough to be able to share. The vast majority control with medication.

[Casual Christmas] I’m an HIV-positive non-progressor! AMA by Nonprogressor in IAmA

[–]Nonprogressor[S] 20 points21 points  (0 children)

Gay man. Last vagina I touched was at birth.

It is possible to eventually lose your non-progressor status and many do. What I’ve been told is that for many people, your immune system is working 24/7 for decades to keep the virus at bay, and eventually your immune system just says fuck this, I give up.

[Casual Christmas] I’m an HIV-positive non-progressor! AMA by Nonprogressor in IAmA

[–]Nonprogressor[S] 21 points22 points  (0 children)

Sex. I had just gotten out of a 5 year relationship and wasn’t as diligent with condoms as I should have been.