Disqualified from research study

[Mightysure]

Hello all,

It's been a while since I've posted but I wanted to give an update on what's going on with me for the 1 or 2 people who care. Lol.

Let me start off by saying that I had signed up for a research study, called Vorvax. The protocol called for the use of voronistat and modified dendritic cells to eliminate viral reservoirs and potentially cure people living with HIV at best.  But they're hopefully that it could at least reduce reliance on daily medications.
Well, as with any study, you have to do baseline labs so they can measure how your body reacts to the experimental drugs. In this study, they were measuring the viral resevoir in infected cells per total cd4 cells in millions.
Well, they just called and said that there was no detectable reservoir. Nor was there any reaction to Voronistat (which was to cause cells to start producing any latent virus hidden in its genome).
Not to say that nothing is there, but it means that my reservoir is beyond the limit of detection which is 0.3 cells per million.

With that, the coordinator informed me that I wouldn't be able to continue, but for me it's good news, because it means there's very little hidden virus, and probably even less competent virus.

I believe early detection and medication was key to this and so hopefully someone reading this who is debating meds will start right away.

[Almost2late]

I absolutely agree, early detection/treatment is key.. I probably have oodles of reservoirs bc I was living infected for more than a dozen years before dx, makes sense bc my blips are frequent.. I probably would've qualified as lab rat,.lol.. But glad to hear your doing so well Mightysure.

[PittGurl]

Mightysure - thank you for participating in a study. I think i would be too scared so kudos and many bowing thanks to you!!!

[harleymc]

Congratulations on the super low reservoir, that's rockin' news.

[Mightysure]

Thanks guys. It is kind of a let down because I didn't want to contribute to curative research, and collect 3500 dollars, but I'm not mad at the reason why I can't.
The worst part was the leukapharesis, which I'd very painful toward the 2nd hour of not bending your elbows with needles in your arm filtering your blood cells.


@Pittgirl I think you could do it. Depending on the study, you could get meds for free and get paid in the process. This study would've paid me 3500 if I had completed it, I only got 300 for the two steps I managed to complete though. And this wasn't one in which you had to stop meds, so it was low risk.
I'd say go for it if the opportunity presents itself.

[Mightysure]

Update

I spoke to the doctor who manages the study. He gave me more detail about my numbers, what they're looking for in this study and why their goals disqualified me from the study.
This study is testing two products for possible cure. Voronistat and a vaccine made of your own immune cells. They need to be able to measure how much effect these two thingd have on resting infected cells. They needed at least 300 per billion cells.
The doctor said I only had 10 per billion, one od the lowest he's ever seen. He said it's about 100 times lower than the average.
I did some math, and it comes out to about 50 in my whole body.  Pretty awesome.
Unfortunately, I can't get the money, but oh well. It's a testament to early detection and treatment.

[Wade]

Mightysure , Thanks for the great post and information.

Bad news is no money...good news is you're doing great