Sure, I’ll share more. Some of what I’m going to send is copied from my
part of an on-going email I have with someone in this group.

Both of us used HAART for an extended period of time, and both of us have
been off for a while. 3 years for myself – a little less for him, I think.
We have been sharing our “recovery” experiences for about a year now.

What I am sending is hard for me to write about, it makes me feel very
vulnerable, especially in a looks-driven culture like ours. I am only able
to do it because a lot of it is behind me now.
I was ’diagnosed’ in 1989. I was prompted to test after my partner at the
time decided to get the test and it came back positive. Mine was positive
also – CD4 count 462, no VL’s back then. I had no symptoms, but was told
“…unfortunately, the virus is already destroying your immune system. You
must start AZT immediately.”

Later I was told I would start to get sick in about 18 months, and then I
would get very sick within 2 years – and die. I won’t go into the
psychological ramifications of all that since you asked about the drugs.
It was high dose AZT all the way back then – every 4 hours – night and
day. I started sometime around Christmas.

All I remember for the first several months or so is sleeping, throwing
up, an unimaginable nausea (I actually had to get rid of a puppy I got as
a present that year because I couldn’t stand his smell), and an unending
headache.
I got weaker by the day. I remember a walk to a convenience store less
than 2 blocks away in which I was so fatigued and confused that I
collapsed in the street. I couldn’t sleep.
I lost a lot of my hair. I lost my a.s. I got sicker. Remember, I didn’t
have ANY symptoms before starting the drug. After a year I thought “Well,
if I only have another year, I’m not spending it like this.” So I stopped
the pills. I was living in the city and had been scared to put the empty
bottles outside for the garbage men (someone might have seen my name on a
label).
I remember collecting them all in a big bag and just freaking over how
many pills I must have taken – and I didn’t even know what I know now.

Now, as plain as day, I remember the prancing unicorn with Wellcome
underneath it on that damned pill. It was a strangely pretty ‘medicine’.
Anyway,I slowly got better over the years – I may have made a full
recovery that time, I don’t know. I started living again, though, for
sure. .Oh...my CD4 count NEVER went above 500 during the whole
experience.
In ’97, I started ‘the cocktail’. Sounded nice enough. It consisted of
Crixivan, Epivir, and Zerit (instead of AZT because according to my Doc I
had had a ‘bad’ reaction to AZT). I got the same symptoms as before, but
they got a little better after several months. I didn’t know about lipo at
the time, but boy, I thought I was really aging fast. I was 34. Before I
knew it I had moderate/severe lipoatrophy (fat loss) and myopathy (muscle
loss).
My arms had stretch marks at the bicep area and looked like shriveled
balloons. My biceps had always drawn a lot of attention before this. My
legs started looking like a road map (protruding veins) and I lost my a.s
completely. I remember my arms always being tired because I held my body
up with them when I sat down due to the fact that I sat on bone.

My a.s chaffed a lot from my cheek skin rubbing while I sat on it. My face
was the worst. Hollow cheeks and temples and no fat anywhere. When I
smiled, the skin looked like someone pulling back curtains on a stage. I
looked extremely shriveled up and old for my age. My eye sockets were
hollow, my eyes looked sunken in. I always looked kind of scared, like an
animal caught in a car light.
My skin became very thin in all those areas. It felt like the skin you
tear off when eating baked chicken. I wanted to have fat transplanted from
my body to my face at one point. When I went for the procedure, they
couldn't get any fat out of my body to put in my face. They gave up. The
cosmetic surgeon said he had never seen anything so “fibrous” as the fat
he was trying to get out of my hip. I had been handsome, muscular, fun –
now, when I went out, people looked past me.
Or worse…AT ME! I had never experienced that before. It really got to me –
especially when I came to know it was the ‘meds’ causing it and not
age/AIDS. I felt awful too. More and more I could do less and less. I
couldn’t go to the gym anymore. I couldn’t walk very far.
I had aches in my joints all the time and I began have panic attacks for
the first time in my life. I was eventually put on an anti-seizure drug
for them as nothing else would help. I am convinced these were caused by
damage to my nervous system.
In addition to lipoatrophy, I also developed lipohypertrophy (fat
accumulation) in my ab area and my upper back. This was bad too. I
couldn't breathe well as the fat was literally pressing my lungs closed.
My abs were rock hard but pushing way out because they were stretched from
the inside out. They were always sore – like after a good workout, but I
hadn’t done anything. I always felt like I was falling forward when I
walked and pulled my back out a lot. I also ripped ligaments in my leg
several times and developed sleep apnea from fat accumulating in my
throat. I had a lot of fat accumulated on my back too. I had a really hard
time holding up my head. 
It felt like I was in a constant struggle with someone who was pushing my
head down from behind. It was on my neck AND shoulders. It never looked
like the pictures I've seen, but I was really big on top. People thought I
played football. I couldn’t button the top button on my shirts either. I
won’t even tell you the psychological hell I was going through when all
this was happening.
Eventually, I knew it was the ‘meds’, but was terrified to stop. My
highest CD4 count during this whole time was 550 – but they weren’t
declining and my VL was undetectable – and that’s all ol’ Doc cared about.
Not the disfigurement, not the skyrocketing cholesterol, not the constant
sprains, torn ligaments, back and breathing problems. After 3 ? years I
had had enough. I figured I was the living dead already so what the hell –
again I threw out the meds. By now it was Crixivan and combivir (which is
AZT and something else, maybe Epivir – yeah back to AZT because
unfortunately I had a worse reaction to Zerit than I had to AZT LOL).
Then…nothing. I held my breath – waiting for IT. Oddly, I began to feel
better. I got stronger – and calmer. Around a year and a half after
stopping, I was rubbing my eyes and realized the skin on my face was
thicker.

I thought about it and realized I had been sitting down without the use of
my arms for a while w/o realizing it – my a.s was coming back. Slowly –
ever so slowly, I began to see improvements in all areas. I went back out
to a bar and yes – there was that look in guys’ eyes again. They were
looking at me … in a good way.  By this time, I didn’t really care much
about that, it was the fact that I was looking normal again that thrilled
me.
It’s been 3 years since I stopped the meds. I can still see scars from
that time – my body is not the body I used to have.
But it’s better. I’m back at the gym, feeling good, no panic attacks. I do
fear, however, what might be brewing on the inside – the long term effects
of having taken that stuff. I’ve had several friends killed by these meds
and one put in a wheelchair by them. I also know people who were ‘pos’
around the time I tested, have never taken the drugs, and they are fine as
far as I can tell.

I’ve yet to have any health problems (other than med induced) even though
I became  “full blown” about 10 years ago – due to a CD4 count of 125. I
haven’t seen an ID Doc in about 1 ? years. I do see Matt Irwin for
preventative measures. If you all have question, just ask.