The luck of the draw

[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]

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?

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.

[mecch]

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.

Sure we are all positive here.  I had safe sex for years until i didnt. Also, a lot of people had safe sex with pick ups but dared unprotected sex with boyfriends.  Im just talking about me and my gay friends in NYC.  We all were tested rather regularly, just my experience so I was curious how someone goes 20 years without wondering.  I had bfs who were HIV+ and we had safe sex so I didn't get infected back then, but yeah, tested pretty regularly. Also I had various malaises, and doctors of gay guys would often offer the test for whatever reason.

As to the incubation period I'm not sure what you are referring too. When someone get HIV, theres a few week window while it establishes itself before the person tests HIV+.  Thats it. 

If you are a a long term nonprogressor or elite controller, you've been positive all those years, and not in "incubation", rather fortunately had viral control.

[tednlou2]

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.

I am pretty confident I was infected the summer of 2001.  I didn't get diagnosed until December 2008.  My numbers have been fairly stable.  I was given mono-therapy (mistake) in the hospital.  That did get me UD and a CD4 over 1,000.  The med was stopped.  After a while, my CD4 was in the 800's and vl never over 28,000.  Over the last couple years, it has been high 600's to high 700's, with a vl often lower than 20k.  My percentage is what fluctuates, which is usually odd, from my understanding.  It often bounces back and forth from low 20's to high 20's. 

Now, last time, everything was the same, but my CD4 dropped to low 500's.  I always said I would definitely start once it is consistently in the 500 range.  I was very stressed at the time I did the blood work.  So, I will be interested to see what it is, when I have it done again next month.  The last test also showed a drop in CD8.  It was always about 1,800.  It was around 1,000 last time.  But my vl and percentage were unchanged. 

About testing-- I tested in 1994 with my previous partner.  He happens to be in the AIDS category now, but it is hard for me to believe I have been poz since 1995, when we were last together.  He claims to have been infected in 2003 and with AIDS by 2005.  If true, he had a very fast progression.  I met my current partner immediately after the breakup in 1995.  We tested and I was neg, but I could have still been in the window period.  I truly believe my infection came in 2001.  I had what I now believe was a really bad seroconversion.  I did test in early 2002, but I was too coward to get the results. 

Recently, my partner reminded me that in early 1996, I was having swollen lymph nodes and extreme fatigue.  I said yeah, that was an awful case of mono.  He said perhaps that was HIV.  And, he reminded me of some awful diarrhea I experienced around 1998.   I still can't believe I've been poz for 17 and a half years.   I do believe it came from a bad situation with a longtime friend in 2001.  The illness I had was 1,000 times worse than what I had in 1996.  I guess this is another good example of why criminalization is bad.  I can't say for sure which two people I acquired the virus.  I do know it was one of the two, and I think the friend in 2001.  He was poz and recently died, due to ignoring it.  My main point about testing was that when I was young, I didn't sweat a test too much.  As I got older, with more sexual experiences, I did become worried about testing.  Plus, I had a good idea I may be infected, so I was just too much a coward to get that news. 

[Fisher]

Please consider entering studies at NIH.

[Gman49]

I agree with Fisher. I am currently in several NIH clinical studies and have been since dx'd. I personnally have gained and gleamed so much information about the virus.  NIH reserarchers need you so the HIV/AIDS epidemic is cured.