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Main Forums => Pre-HAART Long-Term Survivors => Topic started by: cocoboogie on May 17, 2008, 07:50:29 pm

Title: What Exactly is a Long Term Non Progessor?
Post by: cocoboogie on May 17, 2008, 07:50:29 pm
This maybe a silly question but I am curious as to what qualifies someone as long term non progessor -or- long term slow progessor.  I have seen the terms used alot but I was never clear how the determination was made.

I assumed a non progressor would be someone who tested positive but never experienced an AIDS defining illness or tcell count never went below the 300/250 mark.  I read an earlier post were someone experienced an OI, was on meds but considered a non progessor.

I kinda guessed I was a slow progessor since I lasted this long (16 years) without my first OI till last year and not being on meds till last month. Is there a blood test that can be perform to determine slow progessor vs non progessor?

I looked in the lessons section but didnt see anything regarding the topic.  Just curious about it.  Any insight about the terms would be great.
Title: Re: What Exactly is a Long Term Non Progessor?
Post by: emeraldize on May 18, 2008, 07:16:15 am
Hello CCB

You may hear from one or two of the LTS LTNP of the elite controller ilk, but until such time (despite the fact that I'm not an LTS, but am viewed by MGH and NIH study PIs as an LTNP of the viremic controller crowd) I can get you started.

You will find some info to help answer your questions here http://www.hivcontrollers.org and if you google LTNP or long-term non-progressor you'll find some information.

Some docs refer to the category (viremic) as long-term slow progressors as there is, over time, downward progression of the CD4 count. The post you cite regarding someone here being an LTNP who experienced an OI and was on meds perhaps qualified at one time, but that apparently changed. If a person is on ARVs, they're no longer an LTNP, as no meds is one of the defining criteria. The body's immune system has to be doing the suppression work unaided by meds.

One of the long-time members of this forum was an LTNP and I always hold his story in mind with every quarterly lab check. After a number of years of LTNP status, everything about his LTNP status went upside down, and suddenly, he had to go on meds.

I have never looked at my status as a guarantee, but also try to do everything I can to support my immune system--don't smoke, don't drink, daily multi-vitamin, eat a wide range of mostly healthy foods (but make allowances for ice cream under the "calcium" category ;), moderate exercise (should actually be more ::)), try to keep stress in check, get enough sleep.

BTW, yours is not a silly question--it's a great question. And, every time this topic is raised, there's a chance someone who is an LTNP will learn about it, verify it, and then consider enrolling in Walker's study (MGH) or one or more at the NIH.

Em
Title: Re: What Exactly is a Long Term Non Progessor?
Post by: OzPaul on May 18, 2008, 12:50:54 pm
Hi Coco

A great question indeed  :D Em has most of the points about LTNP's spot on.

Being one of several LTNP's here at the Forums I can indeed say that it is no guarantee of the future. Though I've been poz and healthy without medication since 1981, I too hold my breath a bit when I get my test done, usually as part of one of the  LTNP studies I'm enrolled in.

Like Em, I'm enrolled in the HIV Controllers study in Boston, where I'll be going to in two weeks time. It is the 5th year of my participation in that study. Like wise, I'm in the NIH LTNP study. Here's a link to  that study                     

http://clinicaltrials.gov/ct/show/NCT00029445?order=1

As a resident of Australia I'm also in a LTNP study in Sydney.

Over the years here at the Forums I know that several LTNP's have found studies to participate by following links that were posted in these topics.

In the grouping of LTNP's, I'm what is sometimes called by researchers an 'elite controller'.

Cheers
Paul