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Main Forums => Living With HIV => Topic started by: CalvinC on March 22, 2009, 07:23:32 pm

Title: What constitutes "non-progressor"?
Post by: CalvinC on March 22, 2009, 07:23:32 pm

Hi all

I was going to post this in Living With HIV but I thought that perhaps there is more wisdom around this topic in this forum. Sorry if I am wrong.

I tested poz just about three years ago (and I believe I sero-converted in the six months prior to that test). I have had bloodwork done every three-four months since then, and the numbers/percentages tell exactly the same story, according to my GP: no change. Excellent CD4 counts and very very low VL. I do not take any medication nor ever have.

I realize that this may change tomorrow and I accept that.

But when do "good numbers" become a trend that makes one a long-term non-progressor?

Cal
Title: Re: What constitutes "non-progressor"?
Post by: OzPaul on March 22, 2009, 08:56:35 pm
Hi Cal

That's certainly great news about your numbers !

It sounds like at this point you would be classified as a 'viremic controller' which is good news in itself. Usually a long term non progressor (ltnp) is after 7 years with good numbers, no meds and no HIV illnesses. The are several members here who are either viremic controllers or ltnp's, myself amoung them.

There are several studies that you might qualify if you're interested. You may be able to participate even as a Canadian.

One is the International HIV Controllers Study

http://www.hivcontrollers.org/

another ltnp/viremic study is located at the National Institutes of Health (NIH) near Washington DC

http://www3.niaid.nih.gov/Volunteer/HIVandInfectious/HIVstudies/LTNP.htm

Myself and other forum members are in these studies. I go back to NIH in a few weeks for that study. I'm sure both studies would welcome your involvement. I've been in them for 5 years now. I tested positive in 1985 though likely became infected in 1981.

Please feel free to PM me if you have any questions about the studies or anything else.

Cheers,

Paul


Title: Re: What constitutes "non-progressor"?
Post by: CalvinC on March 23, 2009, 05:10:59 pm
Good news! Thanks for the links and thoughts.

Cal
Title: Re: What constitutes "non-progressor"?
Post by: madbrain on March 23, 2009, 09:19:30 pm
Hi,

Hi all
I tested poz just about three years ago (and I believe I sero-converted in the six months prior to that test). I have had bloodwork done every three-four months since then, and the numbers/percentages tell exactly the same story, according to my GP: no change. Excellent CD4 counts and very very low VL. I do not take any medication nor ever have.

I realize that this may change tomorrow and I accept that.

But when do "good numbers" become a trend that makes one a long-term non-progressor?


Long-term is all relative. Ask in the LTS forum for an opinion on that. lol, on second thought, don't do that.

When you say your VL is very very low, how low is it ? What has the range been ?

The HIV controllers study has two groups - those with <2000 VL which they deem "viremic controllers", and those with undetectable VL, which are called "Elite controllers".
I am in that study under the first group. I had a few labs slightly above 200 0VL, but over half were under. I have only been poz for about 2.5 years. No HIV meds yet. If you qualify for the study, I would highly recommend you join now. It's a simple blood test.
Title: Re: What constitutes "non-progressor"?
Post by: Basquo on March 23, 2009, 09:29:26 pm
I am in that study under the first group. I had a few labs slightly above 200 0VL, but over half were under. I have only been poz for about 2.5 years. No HIV meds yet. If you qualify for the study, I would highly recommend you join now. It's a simple blood test.

Same here as Madbrain.  A few VLs over 2,000, most well under or undetectable. In the same study. 9 year diagnosis anniversary in May.
Title: Re: What constitutes "non-progressor"?
Post by: Funkengruven on March 24, 2009, 02:51:42 pm
I'm in that study, as well.  It was very simple and took almost no time on my part.