Please respond to this if you have the time

[Guest guest]

Guys,

I've been off meds for 2 yrs after taking them 3 1/2 yrs. I felt

unwell and had lipo (not extreme) just before my med holiday.

My question to you guys is, with all the damage these drugs do to

our bodies (inside and out), is anyone doing 'okay' on them for any

extended period of time? How long? Why do you think you are doing

well - besides the fact you are not dying, of course - what do you

do to keep your health and spirits up?

I am really scared to start the drugs again - esp. considering the

fact that I've never had any HIV-related problems. However, my CD4

count is down to 208 and VL has sky rocketed.

I guess I want to know if anyone is living a relatively normal life

while taking these drugs long term. Not so much how you look - Do

you FEEL okay?

I felt terrible (and didn't look great) towards the end of my

regimen - but it was one of the first 'cocktails' and my doc says

they don't even use that combo anymore.

[Guest guest]

That is a good question. I think these meds affect different people different ways. Myself, I have been poz for almost 21 years now. Yes, since 1983 confirmed by an insurance blood exam. Probably longer, that is just when I found out. I did not start any meds at all until 1992 and did the AZT thing until PI's came out. I started them in 1996 I think. The first regime was Viracept, Videx, and viramune. It did not get me quite undetectable, back then under 400 was considered undetectable only did that for a few months, then we switched to the heavy dose of Norvir, Fortavase, Videx and Viramune. The heavy dose was the standard at the time. The only side effect was diarrhea but could be managed if I managed my diet enough and occasionally had to use some medication to stop it. Then after a couple of years, my triglcyercides started to skyrocket, got up into the thousands at one point. We cut the Norvir dose in half and was still able to remain undetectable with acceptable cholesterol. I also added anabolics a few years ago. I stayed on that regime until a few months ago and we switched out the Norvir and Fortovase out for the Rayataz and kept the viramune and videx. Cholesterol is normal and VL undetectable. As far as the way I feel, I generally always feel great. Fortunately, I am blessed I have never had any problems. I try to maintain a "balanced" way of life. I do workout alot, weights and cardio and maintain a very good diet, don't abuse anything. The job stress can be a bit much sometimes, but I would rather have that that be stressing about failing health. But I know what you mean about how they affect you. I think that being in this situation, we tend to be more in tune with our bodies than most people so you know when there is something different. I have noticed differences every time I switched meds. Differences in your senses and just your general physiology. However overall, I have always felt good. I try to stay fairly informed about the advancements and not be the first to jump on a band wagon with any new fad. At least see what some of the results are before making a decision. I also try to maintain other interest in life rather obsessing about HIV. It's there and my philosophy has always been "you can manage it or it can manage you" Other people live with chronic disease so I do not consider this any different from diabetes or Heart disease. Relationships with other people is also an important factor, including partners and friends. I have been blessed with a wonderful partner as well that for the past seven years has been the most wonderful person in my life.

God, only knows how many people I have known to die. It seems like just about everyone I know is just about gone. Before the PI's came out, I remember one year around Christmas, it seemed like every time the phone rang it was news of someone you knew of or about had died. Every time I saw a friend weither down, get dementia, brain tumors, I just dreaded the end. I myself honestly never expected to reach 30, but in the back of my mind I always knew something would come around and we finally got some meds. 30 came and passed and I figured not to reach 40, well it came and went and now I am 41. Weird, how all of the sudden you find yourself thinking, oh shit I did not expect to live this long. OK, what next?

I thank God everyday I have been so blessed. But if I die tomorrow, i feel fortunate I have lived longer and had a better quality of life than most of my peers.

I suggest you get back on your meds ASAP!, Be consistent in dosing and quit fucking with your health! Ok a little tough love never hurts.

[Guest guest]

I started back on Reyataz/emtriva/videx ec, after a three vac.

(started drugs in 89). In one month vl went from a mill to a couple

thousand. Its been almost 6 months now. The vacation was great. The

thing about all these drugs are,you never know if you are just

imagining these side effects. I am gaining pounds even though I am on

diet and excercise all the time. Diahrea most days. Always in sort of

a brain fog. I used to think I was just depressed. But I have had it

with so many of these drugs, I know now it is a side effect for me.

No one ever said it was gonna be fun. I dont complain to my wife

anymore about it, its not worth the time. Just gotta keep gettin up

every morning and stay in the game. You never when something good is

going to happen. I know something good is right around the corner,I

just have to stay in the game. Take the drugs.

> Guys,

> I've been off meds for 2 yrs after taking them 3 1/2 yrs. I felt

> unwell and had lipo (not extreme) just before my med holiday.

> My question to you guys is, with all the damage these drugs do to

> our bodies (inside and out), is anyone doing 'okay' on them for any

> extended period of time? How long? Why do you think you are doing

> well - besides the fact you are not dying, of course - what do you

> do to keep your health and spirits up?

> I am really scared to start the drugs again - esp. considering the

> fact that I've never had any HIV-related problems. However, my CD4

> count is down to 208 and VL has sky rocketed.

> I guess I want to know if anyone is living a relatively normal life

> while taking these drugs long term. Not so much how you look - Do

> you FEEL okay?

> I felt terrible (and didn't look great) towards the end of my

> regimen - but it was one of the first 'cocktails' and my doc says

> they don't even use that combo anymore.

[Guest guest]

off meds for 6 months and felt the best I have in 10 years!. viral load shot

back up after a breif lull. Same with t-cells, they went up first then dropped.

Back on meds now. My partner has the exact pattern after being off meds for 1

year. It's time fo him to go back on. The brak is nice. HOPEFULLY someone not

connected with a drug company will fund a large and serious study about STI's.

Re: Please respond to this if you have the time

> I started back on Reyataz/emtriva/videx ec, after a three vac.

> (started drugs in 89). In one month vl went from a mill to a couple

> thousand. Its been almost 6 months now. The vacation was great. The

> thing about all these drugs are,you never know if you are just

> imagining these side effects. I am gaining pounds even though I am on

> diet and excercise all the time. Diahrea most days. Always in sort of

> a brain fog. I used to think I was just depressed. But I have had it

> with so many of these drugs, I know now it is a side effect for me.

> No one ever said it was gonna be fun. I dont complain to my wife

> anymore about it, its not worth the time. Just gotta keep gettin up

> every morning and stay in the game. You never when something good is

> going to happen. I know something good is right around the corner,I

> just have to stay in the game. Take the drugs.

> > Guys,

> > I've been off meds for 2 yrs after taking them 3 1/2 yrs. I felt

> > unwell and had lipo (not extreme) just before my med holiday.

> > My question to you guys is, with all the damage these drugs do to

> > our bodies (inside and out), is anyone doing 'okay' on them for any

> > extended period of time? How long? Why do you think you are doing

> > well - besides the fact you are not dying, of course - what do you

> > do to keep your health and spirits up?

> > I am really scared to start the drugs again - esp. considering the

> > fact that I've never had any HIV-related problems. However, my CD4

> > count is down to 208 and VL has sky rocketed.

> > I guess I want to know if anyone is living a relatively normal life

> > while taking these drugs long term. Not so much how you look - Do

> > you FEEL okay?

> > I felt terrible (and didn't look great) towards the end of my

> > regimen - but it was one of the first 'cocktails' and my doc says

> > they don't even use that combo anymore.

>

>

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