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The luck of the draw

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auwe:
First post here. I feel incredibly fortunate - for now.

I tested for the first time ever in Aug/2011 (no particular problem, I just happened to be near the clinic).  It came back positive.

At my first visit with an HIV specialist  he said that due to the blood test results  I could wait to see if I needed to go on any treatment.  When I retested 3 months later, my CD4 count had gone up and the viral load was undetectable.  So, no meds were necessary.  I would just have regular blood tests and, if everything was still okay, I wouldn't even have to visit the doctor regularly.  Results were similar in two subsequent exams:

Sept/2011: CD4: 950; VL: 380
Dec/2011: CD4: 1192; VL < 75
July/2012: CD4: 886; VL < 75
Dec/2012: CD4: 956; VL < 20 / 37% (not clear on what this percentage means)

In the early 80's I had a few bouts with swollen lymph nodes.  Nothing painful, each time it went away after about a week.  And that was it.  Never had anything again, so my test results were somewhat of a surprise.  I had practiced safe sex for about 2 decades, so I thought I was in the clear.  The specialist said I may be a long-term non-progressor or an elite controller. 

He informed me that new directives suggest that even long-term non-progressors begin therapy to avoid any damage whatsoever to the immune system.  BUT, in my case the results still show little or no damage so I can hold off.  Even if I have another “blip” as in my first exam, I'm going to wait to go on medication until I'm certain everything is going south.  After all, if (and that's a big IF) my initial infection did occur in the 80's, then my system has kept it under control all this time.  If it ain't broke, no reason to  mess with it.  And thank God – I can see that some of the meds are astronomically expensive and the variety of drugs is so wide that setting up a personalized regime seems like a jigsaw puzzle.

It's great that the people in these forums are so willing to share their experiences and drill down to the details of their treatment and give advice.

Anyone know a person in a similar situation?

tednlou2:
There are a few LTNP and elite controllers here.  I know one finally started meds, due to extreme fatigue.  Do you think you've been poz since the early 80's?  Or, are you really not sure?  I have been poz for what I am sure is now over 11 years.  I am not on meds.  I would say I have been more a slow progressor.  I think there are many who fit into these categories.  They are able to deal with the virus for years, or perhaps the rest of their lives.  If they happen to get tested, many docs would think it was within 10 years, when it may be 30. 

Since you were just dx'd in 2011, I would think you'd want to have doc appts every 3-4 months, since you only have a few labs under your belt.  Below is a good explanation of the percentage.  Good hearing from you and keep in touch. 

http://aids.about.com/od/aidsfactsheets/a/cd4percent.htm

mecch:

--- Quote from: auwe on January 26, 2013, 04:02:17 PM ---First post here. I feel incredibly fortunate - for now.

I tested for the first time ever in Aug/2011 (no particular problem, I just happened to be near the clinic).  It came back positive.

At my first visit with an HIV specialist  he said that due to the blood test results  I could wait to see if I needed to go on any treatment.  When I retested 3 months later, my CD4 count had gone up and the viral load was undetectable.  So, no meds were necessary.  I would just have regular blood tests and, if everything was still okay, I wouldn't even have to visit the doctor regularly.  Results were similar in two subsequent exams:

Sept/2011: CD4: 950; VL: 380
Dec/2011: CD4: 1192; VL < 75
July/2012: CD4: 886; VL < 75
Dec/2012: CD4: 956; VL < 20 / 37% (not clear on what this percentage means)

In the early 80's I had a few bouts with swollen lymph nodes.  Nothing painful, each time it went away after about a week.  And that was it.  Never had anything again, so my test results were somewhat of a surprise.  I had practiced safe sex for about 2 decades, so I thought I was in the clear.  The specialist said I may be a long-term non-progressor or an elite controller. 

He informed me that new directives suggest that even long-term non-progressors begin therapy to avoid any damage whatsoever to the immune system.  BUT, in my case the results still show little or no damage so I can hold off.  Even if I have another “blip” as in my first exam, I'm going to wait to go on medication until I'm certain everything is going south.  After all, if (and that's a big IF) my initial infection did occur in the 80's, then my system has kept it under control all this time.  If it ain't broke, no reason to  mess with it.  And thank God – I can see that some of the meds are astronomically expensive and the variety of drugs is so wide that setting up a personalized regime seems like a jigsaw puzzle.

It's great that the people in these forums are so willing to share their experiences and drill down to the details of their treatment and give advice.

Anyone know a person in a similar situation?

--- End quote ---

I am a little bit curious about this experience. You just happened to be near a testing center so just happened to test for HIV.  After 2 decades of never being tested.  Why did have a change of heart?

What made you think all those years you were "in the clear"?  I dunno.  I had safe sex for years an years and years and still got tested every so often. Most of my friends did as well. I am curious why some people never ever tested.

Maybe you weren't infected 2 decades ago. 

But if you are an elite controller, hat's off to you, lucky one. And welcome.

auwe:
tednlou2-

The swollen lymph nodes are the only indication of a possible HIV-related infection I've ever had.  Beyond that I obviously have no proof of when I became infected. 

I've been so careful for such a long time that I really wasn't worried.

Since you're not on meds, do you have up and down fluctuations in your test results, or is there a slow, overall trend?   Have you or your doctor set a limit at which point you would start meds?  Mine has, but I thought the threshhold was way too low and I'd rather hold off.  But, like your suggestion, he did establish more frequent testing (every 4 months now).  I just want to be prepared for what I may face in the future.

Thank you for the link and taking the time to respond.

auwe:
Hi Mechh

No change of heart.   I simply had never tested and it happened to be a convenient time to do so.   

Once testing was available in the mid-80's, I was of the mindset that if I came down with anything that could even be remotely related to an opportunistic infection, then I would get tested.    But that never happened.  (I know, I know – I should have done it anyway).

If I rigorously avoided risky behavior for well over 20 years and never once became sick with an oi, why shouldn't I think I was in the clear?  With the possible exception of the incidents with swollen lymph nodes, I really have no clue of when I was initially infected, but I always, always practiced safe sex.  How long is the incubation period anyway?

I assume you are positive?   But you initially tested negative and became infected after practicing safe sex? 

Thanks for the welcome message – it's great to be able to communicate with others who can provide support, advice and answer questions based on their experiences.

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