Hey Mark, October will make 11 years for me. I haven't had any major side effects thus far, just muscle spasms caused by the Epzicom. I do worry about the neuropathy effects these meds could have if any? I know the doctors don't really know what the long term effects these meds can cause. Good question, I too am wondering how other long term survivors are doing. What challenges they have had to face.

Hi M, like you said, everyone is different. My beginning years of this journey for me was much lenient than most @ that time.( RIP ). I didn't start any of the cocktails until 1996. Crixivan was a big gun for everyone, but since then, things have changed quite a bit. When I finally confronted this, it was 1991. A Co that makes & bottles much of GNC & TwinLabs ( @that time ) is when I started a 32 pill & 3 powder mixes of immune enhancement regimen that kept me stable until 1996. The Virus became resistant ( 350 CD4 from 650 ) & my ID Dr couldn't believe I was not only alive, but very well. Tried 2 Protease Inhibitors w/ various Antivirals ( 2 cocktails ) for roughly 4.5 months. I waited a year to begin Crixivan, cause I could, then I dropped to 350 CD4. Took it w/ 3TC & D4T, but when Virus became resistant to other people that were taking it, nothing else worked ( @that time ). So I stopped it & started Viracept w/ 3TC & D4T. After just a month, I started to get tingling sensations in toes & fingers. We knew what it was, & changed again. This time, my new Dr wanted me just to try Antivirals ( Combivir & Viramune ). This combination was fine for over 14 years, but my marrow after so much time could have been compromised ( it wasn't ). I lost my Wife to Cancer @ that time, & after 6 months w/ out any Medications, I started Atripla ( CD4 was 450 ), October 2009. Currently still Atripla. So since 1996, these Medications have had the following side effects ( 4me ):

14+ years Antivirals - all day fatigue, loose stool occasionally, night sweats & memory loss
Atripla - Fatigue, Vivid Dreams, Occasional night sweats, Memory loss & after 3 years, beginning signs of Lypodystrophy. I also have never been on Disibility, & worked up until my Wife passed away

I've taken HIV Therapies approximately 17+ years, & my Kidney's & Liver are showing wear. Between 1 & 2 Liters of water a day has improved my #'s. My Memory is not the same as 20 years ago, but I wasn't the perfect example of a Mature Adult either. With that being said, if I would have lived my Life differently, maybe my #'s would be a little better. My GFR was stable @ 56 ( normal b/w 60 & 80 ) & my Creatinine was always at a good level. Liver Enzymes always at a decent level, being a product of the Woodstock years took a toll. Liver is course, not smooth. Short Term Memory is toasted, but overall, I could be in much worse condition. Failed a Formal ADD Test ( had it all my life ) I mentioned there were no Meds b/w 83 & 91. Not everyone can choose this path, my Parents Genetic Background kept me safe until I had to begin therapy in 96. I'm not w/ in an AIDS Diagnosis during my entire 30 years, & having HIV 30 years is uncharted territory. When all of you are entering your 30 year Anniv, there will be more statistical data available for Infectious Disease Physicians to refer to for your therapy.

30 years positive for me, too, as you know. :-) In 1995, I'd had the virus for 13 years but didn't know it until I came down with PCP (and deduced that I'd been infected 13 years earlier by a certain boyfriend).

So on the day I found out that I had HIV and AIDS, I had 14 T cells. The protease inhibitors came out soon after that, but I didn't start on them until 1999 because the side effects of the AZT, d4T and whatever else I was on at the time were enough to scare me away.

I had major side effects and other medical issues that forced me to stop working. It took 10 years from date of diagnosis to get my Ts up into the 300's but by last year they were 700+. (Now, after a cancer diagnosis and a year of treatment they are back in the 300's.)

I've been on tons of different meds, my virus developed resistance to a number of them AND some I hadn't even tried. I've had lots of side effects, from nausea, dizziness, fatigue, muscle/joint pain and weakness, diarrhea, etc. Basically every side effect except neuropathy, even though I was on d4T at one point. Now I have some pain in my feet, and I can't walk well for awhile after sitting or lying down ... I think this is a nerve problem but not necessarily neuropathy. Not sure.

I do have significant lipodystrophy, and it's been a real struggle over all these years to find clothes that fit, to sit without pain (no butt!), etc.

I think my liver and kidneys are holding up relatively well, my memory and concentration aren't great (but that's a combination of HIV/menopause/age/chemobrain). Also, HIV caused anxiety/depression which I've dealt with off and on over the years.

My cholesterol and triglycerides finally went down once I got off Kaletra. Now all I have to worry about it slight anemia from AZT, which I currently take (in the form of Combivir, even though my virus is resistant to 3TC) along with Isentress.

I have been positive since 1993. I did not start meds until 2008 because I was afraid of drug resistance and damage to my body from the drugs. I am on Epzicom (which I have been told may have contributed to a heart attack I had July 9th, 2012) Lexiva and Norvir. In over two years I have missed one dose because I was sick and threw them up. I have also become a vegan and work out on a very regular basis. I have done my own research and have come to the conclusion that animal proteins cause inflammation in the body. HIV causes systemic inflammation. That is the reason for my becoming vegan.

I am doing well. I have only ever had shingles and thrush. I, of course, get the usual cold, etc.

hi mark long time no hear.hope all is well.21yrs for me.still going strong. robin

Hi etherize, I remember We spoke a few weeks back. I hope that your feeling a little better. I thought they stopped administering ( Combivir & Viramune ). Especially anything containing AZT. I also deal w/ anxiety & memory loss from this ever since 84. Not many of us around Etherize. Hope Chemo has helped, I watched my Wife suffer w/ Chemo Brain ( it's sad ) I am always thinking of you & watching your posts/replies ) Nice to hear from you!!! :)

Hi Mark, impressive story of your med issue & not until 08 to begin the cocktail. I'm sorry about your heart attack you had July 9th, 2012. Vegans & Vegetarians blow my mind. It's quite an accomplishment indeed, as well as a seasoned imagination. My Sister In law is a wonderful cook & Vegan, & obviously resourceful. It's a task to keep food interesting until one becomes adjusted. I can't imagine Life w/ out Seafood. I'm so glad that you have fared so well until 08 ( I hope We talk more & look forward to doing so ) I started a Boot camp training class as well & have been doing so for over a month now, things are beginning to come together. :)

Holy crap Robin, I wondered what happened to you!! Thank you for stopping in. Your story blows my mind. You should post it to see who else has fared as well as you for so long w/ out meds. Nice to hear from you & hope all is well :) xx

Combivir may not be a first line med anymore, but my virus is resistant to so many of the meds, I didn't have a lot of choice. I was on Kaletra and 3TC before, for many years, but had to switch when I started chemo.

I've been MIA, & couldn't remember my password & DS doesn't respond w/ password recovery :(. I originally was Mark1424. I'm hoping all of us on this thread are still doing wonderful.

Hi there, I'm new here. I was born hiv+ in 1983 and was diagnosed and began treatment in 1989 I think. My liver has been showing signs of wear and I've been occasionally struggling with feelings of pins and needles. But other than that I feel like I'm doing pretty good

Hi livingmLife09,
I acquired my virus in 83. Nice to meet you & sorry I didn't get back to you sooner. Life just gets in the way sometimes. After 35 years, I've seen many variations of how we deal w/ this (as easy as possible) & as uneventful as possible too.

What are your Meds & counts? Pins&needles? Is it associated to your extremities? Is there also any numbness in your toes & fingers? Keep your Dr in the loop. Do you have a caseworker? It's like a Social worker, but strictly any associations w/ our lifelines & assistance as well.