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Anonymous
Unregistered

Expect the best!
      #44465 - 11/21/02 05:57 PM

Note: As I started to think about, many of you should start looking into this. Find out where clinical trials are on drugs without these side effects, and when new ones will be out. The only thing you have to lose is your body. I'm glad to be alive, but I would be happier if I didn't look like a living corpse!
Hey Gregg: The bitterness is not in my post, it's in me! And it not's directed at you. But I would like for you to do something. I am not on any PIs. Four years of nukes (currenlty Trizivir and Viread) have caused severe lipo. Be just as scared of the nukes and non-nukes as you are of PIs. Hey, I'd be living it up at clubs and raising a kid too, except for the liver problems and gross veins on the top of my skin. I used to be you. It all occurred over a few weeks one Spring when I started to melt away. Save yourself and demand that your doctor and the drug companies address the problems with the side effects. Too bad more of you well positives don't start raising hell. Drugs can be made better. Look at Thalidomide fiasco, Rezulin deaths and the most recent Hormone Replacment Therapy controversy. Question! Question! Question!




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Anonymous
Unregistered

Re: Expect the best! new
      #44477 - 11/21/02 08:04 PM

There are still decisions being made about lipo. Remember back in the early 80's when people had it without being on any meds. While they've proven the PI's increase lipo in some, some people get it without any meds. It's convienent to say the meds caused it all but it could be the HIV itself to some extent. Luckily there is research going on now to find something to combat the lipo. Finally I hope the doctors will realize that it is a devistating aspect of this disease.



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Anonymous
Unregistered

Re: Expect the worst! new
      #44481 - 11/21/02 08:44 PM

"HIV itself to some extent."

Every day you add something new that 'HIV' causes. No medical papers to support the contention, just an easy way to draw attention away from the lethal medications.

Soon 'HIV' will be causing traffic accidents, drive by shootings and the common cold...or does it already?



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Anonymous
Unregistered

Re: Expect the worst! new
      #44483 - 11/21/02 09:01 PM

Soon 'HIV' will be causing traffic accidents, drive by shootings and the common cold...or does it already?

No that is the dissidents causing those.



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Dave Brader
Unregistered

Re: Expect the best! new
      #44485 - 11/21/02 09:34 PM

Lipodystrophy is a mystery still. I have been on Combivir and Viracept for four years and have no lipo. I know a woman who has been on Crixivan and Combivir for over six years, her worst problem is kidney stones. But no lipo.

There are just too many factors to say it is the meds.

Dave Brader



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Anonymous
Unregistered

Re: Expect the best! new
      #44490 - 11/21/02 10:20 PM

I too think it is appropriate to keep actively urging researchers to find meds with less drastic side effects. Some combo's of drugs do have more severe side effects than others, (which may be unavailable to a particular individual because of cross-resistance etc.), and some side effects, e.g. severe diarrea etc. do significantly impact quality of life. Thanks. Also, regardless of whether lipo is caused by the virus itself, or by meds., it's impact on a PLWA can't be underestimated!



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Anonymous
Unregistered

Re: Expect the worst! new
      #44492 - 11/21/02 10:24 PM

It does cause week, selfish people to call themselves denialists. HIV isn't a picnic so denialists simply choose to deny the whole thing...that is until they get sick themselves...then it's one loud WOOPS!



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Karla
Unregistered

Re: Expect the best! new
      #44536 - 11/22/02 01:28 AM

This was me too re: continuing to urge researchers to find better meds/alleviate the devastating effects of severe diarrea, lipo etc.. I 'went anonymous' to try to prevent inciting a riot; (it didn't work); sorry to mess up what was a good idea/effort Gregg. [It would be easier if I didn't care but, alas...]. You are ALL in my prayers, (whether you like it or not = smiling). K



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gregg629
Guardian

Reged: 04/16/01
Posts: 438
Loc: Boston
Re: Expect the best! new
      #44555 - 11/22/02 09:17 AM

You didn't mess up a good effort, your points of view are very important. This forum is for LIVING WITH HIV/AIDS and that's something that you are doing.

I think it's also very important for people to not just accept what they are given when it comes to meds. I don't I have worked with my doctor to make sure that I have the same high standard of life that I had before starting meds.

One area that I forced my doctor to look at is the dose that they prescribe. With most cocktails they give the same dose to a 6 year old girl as they do to a 200 lb 45 yo man. I found that the morning dose of combivir (AZT 3TC) always made me sick, so at a week point in my life 2 years ago I just stopped taking it. I didn't tell my doctor until 6 months later after I had 2 sets of blood tests under my belt. There was no change in my stats, my viral load has stayed undectable and my CD4's have continued to rise. My doctor has since worked with other of his patients to dose down some of their meds to get rid of side effects with great success. I am also lucky because I get to work with a doctor that deals almost exclusively with HIV patients. I'm in Boston and while I see my doctor at a community center, he is backed up by both Massachusetts General and Beth Israel.

Those of us who are going through this and living it are all together, we all have a common goal which is to make it through his to the other side with as much living and dignity as possible.

Your post puts a side on this that I'm not able to share and that's very important for everyone to hear.

Gregg




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Karla
Unregistered

Re: Expect the best! new
      #44562 - 11/22/02 11:10 AM

Dear Gregg: Thank you for your kind post. I am very glad that you are doing well. Sincerely, Karla



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DaveBrader
Grand Master

Reged: 11/22/02
Posts: 152
Re: Expect the best! new
      #44566 - 11/22/02 01:03 PM

Well said Gregg!



Dave Brader
18 years HIV positive, 4 years since AIDS diagnosis. On HAART for four years.

--------------------
Dave Brader
18 years HIV positive, 4 years since AIDS diagnosis. On HAART for four years.

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ASHLEE
Unregistered

Re: Expect the best! new
      #44609 - 11/22/02 04:43 PM

Dave,
I agree that lipo is to some extent multifactoral for many, mainly GENETICS,undelying non hiv health matters, but also diet plays a huge role as well as exercise(cardio and resistance).However in those suseptible the drugs Do factor majorly.I practice a superior lifestyle and as long as I was on pi's I could not rid myself of a gut.I am now on an sti with my doctor and nothing has changed(still major health nut) except no more drugs.Interestingly...no more gut.Totally gone in 3 months.So for me I can say meds were my lipo instigator.However everyone is different and shoring up their other factors will surely help out somewhat.Also I think the lipo of the 80's preHaart was a completely different animal.Although there were appearence similairities, that was out and out wasting probably mediated by high tnf levels, and other factors but I believe the mechanism of action was entirely different than the lipotrophy of today.



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DaveBrader
Grand Master

Reged: 11/22/02
Posts: 152
Re: Expect the best! new
      #44646 - 11/22/02 07:21 PM

In fact to my understanding, the form of lipodystrophy you describe, the PROTEASE PAUNCH, the meds are the cause. I have read and been told that what happens is that the body starts moving fat accumualtion around your liver to help it carry away toxins. While the gut may be annoying, and by our standards unattractive, it is the body doing what it needs to, to protect the liver. There are other forms of lipodystrophy that do not reverse themselves when meds are changed. The particular type you are discussing is a direct effect of medication. It is a very complex subject. I have not had any real problems with any form of lipodystrophy. I do have slightly high triglycerides. Even those are not dangerously high. I have know some people who have triglycerides in the 3000 to 4000 range, mine have only been at the highest 385, which is high, but my cholesterol levels are actually low, so I am not concerned. LIPIDS and their function are still not completely understood by our medical science yet anyway. Sometimes I think that a lot of people overestimate how advanced our knowledge of the human body and how it functions actually is. Therefore, when there is a problem, that overestimation leads us to believe that there should be a solution. In fact there often is not enough knowledge to solve a problem.

Dave Brader
18 years HIV positive, 4 years since AIDS diagnosis. On HAART for four years.

--------------------
Dave Brader
18 years HIV positive, 4 years since AIDS diagnosis. On HAART for four years.

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