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AIDS research losing its steam
#17763 - 05/08/01 11:13 PM
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Almost twenty years and still no cure or effective treatment (most are too toxic). I think there needs to be a new approach to this mess. What do you think?
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Do you realize HIV is a Virus. And a rapidly changing one at that. There also is no cure for other rapidly changing viral illnesses like the common cold...yet there is a vaccine for some strains of influenza...it's a puzzle. I've read where some physicians think there will be an immmunization within the next 5 to 10 years...yet the Houston Chronicle just came out with a newspaper article that said that a vaccine is probably not going to happen because the virus is so unstable. It predicted that an "immunization like" treatment may be available soon (?) that will help the body boost it's ability to protect the body, you know, right now I think I could even be happy with just that...as long as work continues on the production of a real cure.
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Ya but many vaccines cause the very thing that they are suppose to protect you from. They are proving to be a medical blunder. So much for that avenue. We have heard that there is a promosing treatment for years now. I' just don't even listen to all these latest reports anymore.
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It's amazing how impatient you all are. There is still not even close to a "Cure" for cancer and people have been dying foryears, nor is there a cure for malaria or alzheimers or diabetes or for god's sake BLINDNESS or deafness or spinal cord injuries, Compared to all those things they've made Astonishing strides for people living with HIV. Before 1996 in the United states getting HIV was FATAL! In the big cities, in certain communities, there were funerals every week. The Obits EVERY WEEK had a man in his 40's dying of AIDS (although this was usually written as cancer). Then all of sudden in 1996 the dying fell 40% in the US and this followed in all industralized western countries. Go to Africa today where there are NO medications and the daily dying continues. So these drugs are in no way a cure. In no way are we finished but every year we have new things and it's better than the year before. It was unheard of once-a-day medications for HIV. No this is the trend of the future. It was unheard of NOT to take pills to protect yourself against PCP, TOXO, MAC, Crypto and now no one even knows these acryonyms. So even though it's easier to bitch and complain, what researchers have done in the last 5 years is amazing and it is not over yet.
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You say things have gotten better but look around you. Some of us are alive but look like the "walking dead". People still die even if they take the "cocktail" in fact I have seen that those who go on the "cocktail" die sooner. I think that most live longer in spite of their diagnosis rather than because of it. The general population is more health conscious now and this is probally the biggest contributing factor to good health. I have no hope that there wil ever be a cure for AIDS just better ways to prevent ill health.
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I'm sorry but when you say that that these drugs are "amazing" you are in some sort of denial. They are hell and my body does not like them. Besides they are the same drugs that have been around for the past couple of years so where is all this medical advancment you talk about.
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I know that a percentage of people do not find help from the drugs--but my experience and the experience of everyone I know (at least in New York City) has been good. Working full time, dating--living a full life. It may be that YOU are having a hard time--but lots and lots of people are NOT. Not to say it's easy taking medications and living with HIV. But you gotta compare it to just FIVE years ago and it's better than it ever was before. And again there is plenty of proof of this-- they had, for instance, close lots and lots of support services in New York NOT for lack of funding but because there was NO more need for buddies, and help with pets and other emergency services. The AIDS floors in all the hospitals in NYC emptied out--even in poor neighborhoods. The epidemic has DRAMATICALLY changed. I know people now living with HIV and taking meds in full-time jobs, having babies, buying homes, starting new careers, going back to school, running marathons, in drug rehab, etc. IN 1993 this WAS NOT THE CASE. SO it is relative. And you seem to be having a particular hard time. But understand that the majority (60% or more) of people are struggling but in the fullness of a busy, productive life. (see for example the lots of HIV positive well-known people like representative Tom Duane of New York, Magic Johnson, etc.
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Yes but there is also many people getting off the drugs and doing very well "drug free". Most of the people still on are "alive" but don't look well and I could not personally stand feeling like [censored] everyday. Who needs it! That is not my definition of "living".
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Dr. Cyndia C.
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I don't know where you live but in my area, (South Texas)the majority of patients in my practice look no different than any other patient. We have a few with lipodystrophy and a few with generalized wasting but probably 90% of them look, act and feel good. They have full lives and take daily medicine just like people who have diabetes, heart disease, or hypertension. This is a CHRONIC disease but one that allows for a full life.
We have also found a strong relationship between how well patients do with their medication regimens and their ultimate outcome and the attitude they and their partners (spouses)have about the disease...if you are a positive person, feel this will not kill you and you take your meds as prescribed you will do very well for a long time.
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Yes but do you as a doctor tell them to stop taking poppers, ciggarettes, alcohol, ectacy....I think not. Doctors have very little intererst in keeping people healthy, just towing the party line and making their big fat pay checks.
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Its not a 'puzzle" my friend its "bullshit" and thats how the pharmecutical comapnies make their money. They influence the editorial staff of the media to not question the "viral hyposthesis". That why there is no "cure" for the common cold because it is not viral its something else. Same for hiv. They both are "phantom virus".
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What planet do you live on?? Where have you been for the last 100 years of medical breakthroughs and information? Are you familiar with what a microscope is and what can be seen with one? Colds are not caused by viruses????? How exactly do you think disease occurs? The evil eye, the devil did it, Bad blood?
This is an age of enlightenment, of science, not the dark ages.
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True Believer
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Hmm...I guess polio and small pox vaccines were just big failures. Small pox has been eradicated and polio is a rarity in countries that vaccinate. The real problem with people who try to debunk science is that they seem to have no perspective.
They weren't around when child mortality due to illnesses that are now rare was around 20%.
They ignore that almost all children who are vaccinated against childhood illnesses never get what used to be expected childhood illnesses.
And how quickly we forget. In just a couple of generations that haven't had to face the kinds of illnesses their parents and their parents throughout history did, there are now groups of people who refuse to believe that vaccination is necessary. Those who choose not to vaccinate their children point to their child's health and lack of childhood illnesses as proof that vaccination is unnecessary, but it never seems to occur to these people that you have to be exposed to these illnesses to contract them.
Are there bad reactions to vaccinations? Of course there are!
There are also people who have fatal reactions to peanut products. Does that mean that peanuts are somehow unhealthy for everyone?
And then we have AIDS. How soon we forget. I remember all too well when people were dropping like flies. It seemed like a week did not go by that someone around me near me was grieving over the loss of another who died of AIDS. I am lucky in one respect. I am slow progressor. I didn't want to believe that HIV would kill me. I believed Celia Farber and Duesberg. I read Spin Magazine religiously to get my fix to prop up my denial. It didn't matter that my first lover died a few a years ago of AIDS, he fit the profile of the denialists: multiple stds, partying all the time. I tested positive for HIV just a couple of months after leaving him because of his cheating and lies and partying. I was 19 years old and was a virgin when I met him. 6 months out of the closet and one partner later and I had HIV. I stopped visiting my doctor. At the time, a diagnosis of AIDS was a death sentence. The only thing the doctors could do was watch people die. And that's what I did in my denial. I watched people die and always found some character flaw that led to their untimely demise. It wouldn't happen to me! I practiced only safe sex in the years that followed. I had three sex partners in all that time. One was an ex-lover of my first love. He died a couple of years after we broke up. The other two are negative, with the latest relationship lasting for 10 years. I haven't set foot in a bar more than 5 times in the last 15 years. I had a glass of wine once in a blue moon or a beer at a BBQ on rare occassion. I ate well and exercised. My slow progression allowed me to sustain my denial for quite a long time. At the age of 33 I had a couple of people remark that it looked like I had lost weight. I didn't have as much energy and looked forward to nothing more than getting home from work so I could just lay down. I went from 140lbs to 110lbs because I had a hard time eating but I didn't bother to check my weight (I thought stress was what made it so hard to swallow and I just ignored the fact that I spent a lot of time on the toilet). I managed to go for close to a year like that before it caught up to me. I got the flu. It didn't get better. Despite two weeks off from work, I was waking up with sweats and running a fever every day. I finally got up the courage to go to the doctor. By this time, I had moved across country and had no regular physician despite having excellent insurance. I went to a clinic and was told it was just an upper respiratory infection and they gave me some antibiotics. I breathed a sigh of relief that it was nothing worse. I could maintain my denial despite my mounting fears.
A week later, it hurt so much to breath that I was borrowing pain killers from my co-workers. And the fevers and sweats were not getting any better.
I went to another doctor. This one seemed to take my illness seriously. And that day, my denial died a quick and painful death.
I was shocked at the amount of weight I had lost. 30 pounds is a lot of weight to lose when you never weighed more than 140.
Chest X-Rays showed pneumonia. Worse still, the doctor shoved a mirror in my face and said "See this, it's called thrush."
Then he asked me the magic question. Had I ever been tested for HIV? I lied and said no.
I cried all the way home. The thrush was why it hurt to swallow. The fatigue was my body immune system losing the battle.
I may have lived in denial for a long time, but reality shocked me awake.
The next day, I went back to my doctor. I told him the truth. It took me 2 months to get over that illness.
I found the best HIV specialist I could get in this town (which only has about 5) and managed to convince him to take me on as a patient despite the fact that he wasn't accepting new patients at the time. I had my blood drawn for my various tests. In the meantime, I could swallow again without pain thanks to fact that I had treated my thrush and I started to gain some weight back. I then poured over every site on the web I could find to educate myself on HIV. I had a lot of catching up to do.
In the couple of weeks it took for my blood work to come back, I realized how foolish I had been. I am not a stupid person. Gullible, perhaps. The same naivete that allowed me to believe my first love when he claimed he loved me was the same naivete and gullibility that allowed me to ignore the deaths, ignore the science, ignore the advances, and ignore my own body. Denial becomes a part of you after awhile.
When my tests came back, they were less than stellar.
When I sat down with my doctor, I could see that he was serious and I got scared. I asked him point blank what the results of viral load and tcell count were. I had 22 cd4's and a viral load of 250,000.
So there it was. I had AIDS.
With some trepidation, still remembering the all the anecdotes of those who had taken anti-virals, I told my doctor that Combivir and Sustiva were my drugs of choice (along with prophylaxis).
It's been a year and a half since I started taking anti-virals.
I have energy. I have no side effects. I have been healthy. I gained all my weight back.
I put the same kind of effort into my treatment that I did into denial. I haven't missed a single dose in all this time. I eat as healthy as I can.
Today, my viral load is undectable. I haven't broken 200 on my tcells yet, but I did get up 162. Right now I am in the process of becoming the first patient my doctor has ever used interleukin-2 on. I did all the leg work for him. I gathered all the information on it and presented it to him.
Am I looking forward to the side effects? No. Am I looking forward to giving myself an injection twice a day for 5 days every eight weeks? No.
But I have a lot to make up for. I waited too long. I clung to my denial and this is the price I have to pay for it. Had I started treatment a couple of years ago, I may never have dropped below 200 tcells and I would not be working so hard to regain that which I lost.
You know. Denial can only take you so far. In my case it might take me to the grave, but I thank God that he let me last long enough to use these medications that the dissidents say are going to kill me.
And in a lot of ways, I look on in sadness at the denialist who claim HIV is a hoax. How many will end up just like me?
And now, when there aren't daily obituaries and friends dropping like flies because of AIDS, people are behaving just like those parents who never had to face the scourge of childhood illnesses that existed before vaccination. It's all too easy to forget what happened in the 80's and early 90's.
But, just like me, denial will only take them so far.
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Boy that was a long winded response, but you know life is more simple than that.
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Wow!
Great personal testimony! You should submit your article to an AIDS magazine, like AIDS Project Los Angeles
More people have to read this. Too many foolishly believe the claims of people who do not and have never treated anyone with HIV or AIDS. It's like believing someone someone who has never been in a kitchen tell you how to cook, or believing a car mechanic who knows theory but never touched a car.
The people who say that HIV does not cause AIDS clearly don't care about patients struggling with a difficult and challenging disease.
Bravo! You have told it like it is.
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