Author Topic: Living with AIDS (Read 11553 times)

Etay1207 · « **on:** January 16, 2010, 08:17:47 pm »

Hello guys, here is a video I made about my experiences living with AIDS. Hope you enjoy.

mecch · « **Reply #1 on:** January 16, 2010, 08:35:28 pm »

If you think "full blown AIDS" - which you self describe as having - looks like you, you need to take a walk to the nearest aids service association and speak to some people with more experience with the disease. Why on earth do you "embrace" your awful counts, and then even claim that numbers aren't important.

You can flee all the questions in the other thread with more cheery elusiveness as in this video.

Obviously you are doing well for the moment, noone will say otherwise, but you are a timebomb.

The message you are sending the world is not helpful because it is deluded. You are NOT the face of AIDS, just as snapshot - a good moment for you, but at the edge of something terrifying.

HIV is a manageable disease when you follow the appropriate medical treatements and lifestyle guidance from doctors experienced with this disease.

newt · « **Reply #2 on:** January 16, 2010, 08:40:41 pm »

Well there's the rub, the is no "face of AIDS", it looks different from person to person, some look well, some very ill, I've known people who died in two weeks fro HIV n people who've lived years without meds or illness.

It's a brave man who puts this story on YouTube

- matt

leatherman · « **Reply #3 on:** January 16, 2010, 08:46:12 pm »

nice video, too bad you didn't explain how you have chosen to ignore your doctor's advise and not take any of the meds he prescribed you. too bad, you chose to ignore all the other issues we asked about in the other thread.

here's an easier question then: what sort of job do you do working 80 hrs a weeks, and how do you get any church time in with that schedule? That sort of schedule sounds like burning the candle at both ends.

I agree with mecch, it sounds like you're a timebomb just waiting to explode.

Dachshund · « **Reply #4 on:** January 16, 2010, 08:55:07 pm »

There is no face of AIDS, just AIDS. The most you'll get around here is lectures and anecdotes. I wouldn't pay much attention to either.

skeebo1969 · « **Reply #5 on:** January 16, 2010, 10:46:54 pm »

Hey good stuff. I think the reason you are going to pull through all this is that shirt being buttoned to the top.

Hope to hear more from you as the years go by. Take care Utay!

PeteNYNJ · « **Reply #6 on:** January 16, 2010, 11:22:05 pm »

Ugh, this is so irresponsible.

You seem like a perfectly nice man but to put this out on the internet saying it is fine to live with AIDS with no treatment is simply irresponsible.

Also, there are lots of support groups out there for HIV positive people, but maybe none for people like you because if you stated your situation in one of those groups, I am sure you would get lots of negative reactions (like you have here).

You also seem to imply that every other person you met with HIV was either on drugs or promiscuous which I guess you feel makes them shitty people. Maybe you can start your own support group if you can't find anyone just like you. A support group is great because of the different types of people you will encounter trying to fight this DEADLY disease. Listening to their stories and sharing yours is part of the experience.

skeebo1969 · « **Reply #7 on:** January 16, 2010, 11:27:35 pm »

Pete,

He is better than us, he's only been with one person. It's about as close to being a virgin a person can get.

tednlou2 · « **Reply #8 on:** January 17, 2010, 01:06:19 am »

This is a free country and you certainly have the right to do and say what you want. However, I think you are being very irresponsible. You say you are what AIDS looks like. I'm wondering about all the young people who may watch this video and think HIV/AIDS is no big deal. We know HIV/AIDS has hit the black community especially hard. I worry about other young black men thinking they don't need care. We know young black men often don't seek care for HIV--or way later than their white counter parts. My brother-in-law is black. His uncle died of AIDS, because he, too, refused to take meds.

How many naive, young people will watch your video and think, "He has AIDS and looks good. He says he hasn't been sick. Why should I get into the medical system and treat my HIV or even bother getting tested?"

You should have made very, very clear that AIDS often looks very different. You could have shown pix. I'm not sure whether you've said why you don't want meds. Maybe I missed it. Do you think CD4's are meaningless? The whole AIDS thing is a myth? Only a small percentage get sick and die? Is this a religious thing? I just don't get it.

I think it is good you are sharing your story. I just think they way you are telling it is misleading and irresponsible. You can say I'm on my high horse and soap box. Are you looking for a fight, debate, what? Is this a psychological thing where you are looking for people to show they care? I can't understand.

veritas · « **Reply #9 on:** January 17, 2010, 06:38:13 am »

Etay,

I agree that your video was a brave thing to do, but I have to also agree that you are not the face of aids. You stated in your video that you recently had the "flu" or a "cold" and suffered some parasitic
problems for the first time. Can you not read the handwriting on the wall ? What your doing is showing the slippery slide from an aids diagnosis to the inevitable.

What all of us are doing here, whether you can see it or not, is an intervention. We don't want you to get sick and die.

Please, please start medication. It's easy to get off that slippery slope.

v

minismom · « **Reply #10 on:** January 17, 2010, 06:41:31 am »

I have read your posts and watched your video. Since you want neither advice nor words of concern and compassion, I won't bother with any. I do need some clarification, though. In your video, you stated that a couple of months ago your viral load was 650,000 and they "like dropped 600,000" and are now around 50,000. Not an exact quote, but close enough. However, your signature line shows just the opposite. That 4mths ago (in Sept) your viral load was 50,000 and now it has GROWN over 600,000 to just over 650,000.

Did you make a mistake in your video? On here? Or are you just padding your experience?

Mum

Dachshund · « **Reply #11 on:** January 17, 2010, 07:03:13 am »

Maybe the whole thing is bogus, who knows? However, I don't think people who don't have AIDS should question people who do, real or imagined.

Ann · « **Reply #12 on:** January 17, 2010, 07:45:10 am »

Quote from: minismom on January 17, 2010, 06:41:31 am

In your video, you stated that a couple of months ago your viral load was 650,000 and they "like dropped 600,000" and are now around 50,000. Not an exact quote, but close enough. However, your signature line shows just the opposite. That 4mths ago (in Sept) your viral load was 50,000 and now it has GROWN over 600,000 to just over 650,000.

Did you make a mistake in your video? On here? Or are you just padding your experience?

Mum, YOU made the mistake. He says in the video he dropped 100,000 something and that's pretty much what his signature line says. What he doesn't seem to get is that his VL is still sky-high and at those levels, that drop wasn't really all that significant.

Etay,

After watching your video, I have to wonder if you have ever read much about people's experiences back in the early days before there were any effective treatments available. Back then people used to do anything they could to lead healthy lives, just like you seem to be doing. Problem is, that didn't work once a person's numbers got to the levels where yours are at. And you have to understand that not all people with hiv lead unhealthy lives - before or after diagnosis. You seem to think (going by things you said in your video) that most of us living with hiv lead unhealthy lives and the implication is that progression is our fault, and your seemingly good health is purely a result of your lifestyle. We all wish it was as simple as that.

The bottom line is that you can feel healthy right up until a couple days before you end up in hospital with an OI. Pretty much all of us on this forum have seen this happen either to ourselves, others, or both. This may be a lesson you have to learn the hard way, and I hope it's a lesson you survive.

I wish you luck - and an epiphany before it's too late.

Ann

Moffie65 · « **Reply #13 on:** January 17, 2010, 08:20:10 am »

Ignorance is bliss
Stupid is forever.

adhoc · « **Reply #14 on:** January 17, 2010, 11:43:04 am »

Your video, what little I could watch is ridiculous, you claim to have "full blown" aids, my friend "full Blown" and a clinical definition of aids as presented by the CDC are two differnet things. I have aids, I had a couple light brushes with OIs and let me tell you, you sitting there saying how good you feel, you haven't even crossed the threshold of what you face. In the case of a LTNP (which you are not by your numbers) can live many years beyond the usual 7-10 years most people have before an aids diagnosis. I have seen aids in its most hideous form to the point of making me a believer and to know how serious this is. For any one who has seen the inside of an aids ward will know what I say. While most hospitals have shut down the old aids wards the one I speak of is UMC Las Vegas back in the early 90s when this disease was a DEFINITE death sentence. I have my aids diagnosis because I was stupid enough to bury my head in the sand instead of manning up and facing the possibility I was infected (but i was a believer and I made a bad choice out fear, and now I'm no longer afraid). But its not to late to change as I now have my health in my hands and armed with the tools of science and medication I have bought time till better days and years and who knows possibly seeing the end of this disease. You on the other hand may be only baiting us all to your story. Maybe some desire to be noticed by others I don't know but in this case as so many people before have told you their two cents I think you should heed their word or don't post any more on the subject. As for Moffies post Stupid is forever and my add that to that will be stupidity should be painful. Talk to us in six months to a year when you go blind or shitting yourself to death and cant eat or being eaten away by lymphoma. Ill wait till then.
And when that time comes I will not give one ounce of sympathy, especially when an entire community and doctors are telling you otherwise.

Good Luck Etay

skeebo1969 · « **Reply #15 on:** January 17, 2010, 11:47:03 am »

Quote from: adhoc on January 17, 2010, 11:43:04 am

Your video, what little I could watch is ridiculous, you claim to have "full blown" aids, my friend "full Blown" and a clinical definition of aids as presented by the CDC are two differnet things. I have aids, I had a couple light brushes with OIs and let me tell you, you sitting there saying how good you feel, you haven't even crossed the threshold of what you face. In the case of a LTNP (which you are not by your numbers) can live many years beyond the usual 7-10 years most people have before an aids diagnosis. I have seen aids in its most hideous form to the point of making me a believer and to know how serious this is. For any one who has seen the inside of an aids ward will know what I say. While most hospitals have shut down the old aids wards the one I speak of is UMC Las Vegas back in the early 90s when this disease was a DEFINITE death sentence. I have my aids diagnosis because I was stupid enough to bury my head in the sand instead of manning up and facing the possibility I was infected (but i was a believer and I made a bad choice out fear, and now I'm no longer afraid). But its not to late to change as I now have my health in my hands and armed with the tools of science and medication I have bought time till better days and years and who knows possibly seeing the end of this disease. You on the other hand may be only baiting us all to your story. Maybe some desire to be noticed by others I don't know but in this case as so many people before have told you their two cents I think you should heed their word or don't post any more on the subject. As for Moffies post Stupid is forever and my add that to that will be stupidity should be painful. Talk to us in six months to a year when you go blind or shitting yourself to death and cant eat or being eaten away by lymphoma. Ill wait till then.
And when that time comes I will not give one ounce of sympathy, especially when an entire community and doctors are telling you otherwise.

Good Luck Etay

Very well said....

rioz · « **Reply #16 on:** January 17, 2010, 11:59:25 am »

After viewing the video, I am totally flabbergasted.
This is a very sad story.

Richard

elf · « **Reply #17 on:** January 17, 2010, 12:00:30 pm »

You are so cute.

But the video is a bit of a mess.

mecch · « **Reply #18 on:** January 17, 2010, 12:31:57 pm »

These two threads are going on and on and we mostly having a conversation with each other, not with the OP. The OP does not want to respond to concerns about low numbers. He intimates here that numbers mean nothing.

Its either some kind of denial, or mental block, or refusnik, or delusion, or utter stupidity. He's getting his labs from somewhere so he's getting professional opinion, so it is not a lack of HIV education and information. A critical discussion of the concerns is not in the cards, with this OP, in these threads.

I feel this is a dead end.

Jeff G · « **Reply #19 on:** January 17, 2010, 12:33:10 pm »

It seems Etay has convinced himself that he is the exception to every rule .

I'm remembering being a little smug myself at one time . After a year of harsh HIV drugs I decided to stop taking them , after all I had only been sick at that time due to treatment .
When my numbers fell to around 70 and the Kaposi lesions started to creep up my legs I was back and begging for treatment . It took me 15 years to get to where I am now but the scars remind me of my choices .

WillyWump · « **Reply #20 on:** January 17, 2010, 12:45:08 pm »

I'm appalled by the video.

While I try to avoid telling people how to live their lives, I am so baffled by your rationale that I must respond.

I think you are living in the stone age. You say you are the "picture of health", ok maybe you think you look and feel good, but you are ignoring the facts of your numbers. You my friend, are not the picture of health. You are ignoring your numbers.

Is a person who looks good and feels good but is riddled with early stage cancer, but not exhibitng any symptoms the "picture of health". No.

Is a person who is an early diabetic, but not exhibiting any symptoms the "picture of health". No.

Etc, etc...

You MUST take into account your numbers to really make a statement that you are a "picture of health". You are far from it. You are merely a ticking time bomb. While I wish you no harm, it is simply a matter of time before your ignorance of the situation blows up in your face. It could be today, it could be tomorrow, it could be next year, but it will happen. I dare you to find someone who has survived this disease, without meds, with your numbers.

I wish you no harm, I wish you luck, but above everything I wish you would awaken yourself to the danger you are saddling yourself with.

-Will

pozniceguy · « **Reply #21 on:** January 17, 2010, 01:07:35 pm »

such a sad and terrible way to die..... thinking you are in good health ......

Nick

Moffie65 · « **Reply #22 on:** January 17, 2010, 01:51:13 pm »

I finally downloaded and watched the video. I have one more comment.

Arrogance is a dead end.

minismom · « **Reply #23 on:** January 17, 2010, 01:58:52 pm »

Whoops! I listened to the video again (twice) and caught my mistake. I do apologize to Etay - I misunderstood what you said. Thank you, Ann for keeping me straight.

Mum

leatherman · « **Reply #24 on:** January 17, 2010, 09:56:09 pm »

in the other thread, the nice Mr. Brad Pitt gave us this bit of info

Quote from: Brad Pritt on January 17, 2010, 09:22:30 pm

This Etay is a clear denialist. He has been jerking all over the (blocked organisation name) forum.

edited by Ann to remove a denialist website reference

Rev. Moon · « **Reply #25 on:** January 17, 2010, 10:13:06 pm »

Quote from: leatherman on January 17, 2010, 09:56:09 pm

in the other thread, the nice Mr. Brad Pitt gave us this bit of info

This Etay is a clear denialist. He has been jerking all over the (blocked organisation name) forum.

Mikie, that is just appalling.

To those who had been wondering why this young man continues to track his numbers even though it is evident that he does not intent to start meds, here's the answer from mr. etay himself [as posted in that disgusting denialist forum]:

Quote

This is the reason I still monitor my numbers. I love to go into the clinic happy and healthy with such "bad" numbers. I was excited to finally have an AIDS diagnosis because my tcells dropped below the 200 mark. I am a witness to everyone in my church that an AIDS diagnosis doesn't mean anything. I will be making a YouTube video this week and on Sunday my HIV group at the church will be making a YouTube video. I am proud to be living a healthy life with full blown AIDS.

I believe it was Jan who said in the other thread that we had been taken for fools and that this person was just trying to stir a nasty pot. Guess that was correct.

At this point the right thing to do may be to have these threads locked, the link to that video removed, and [per the the forum rules] to cancel this person's access to our boards.

edited by Ann to remove a denialist website reference

leatherman · « **Reply #26 on:** January 17, 2010, 10:24:12 pm »

Quote from: livebythemoon on January 17, 2010, 10:13:06 pm

Mikie, that is just appalling.

I believe it was Jan who said in the other thread that we had been taken for fools and that this person was just trying to stir a nasty pot. Guess that was correct.

At this point the right thing to do may be to have these threads locked, the link to that video removed, and [per the the forum rules] to cancel this person's access to our boards.

I think Etay is a piss poor representative of his religion by coming into this HIV/AIDS support forum (that adheres to the current medical scientific data and treatments) misleading us (lying by omission) as to his true intentions, while we tried to offer help, support and data to help prevent his possible death.

Jan gets the prize for not being taken in by a jerk.

and I like your suggest for closing these threads.

PeteNYNJ · « **Reply #27 on:** January 17, 2010, 10:36:54 pm »

LOL I love that the power of the internet you can just google someones name and find their real motives behind their posting.

You claim to be the "picture of health" but I think you look a little gaunt in your video. I hope you aren't starting to waste.

God, this is like a bad episode of Law and Order SVU.

skeebo1969 · « **Reply #28 on:** January 17, 2010, 10:42:38 pm »

Wow Etay's a truck driver!

CallMeSid · « **Reply #29 on:** January 17, 2010, 11:03:31 pm »

Etay,

I wish you the best. You *DO* deserve to be healthy and happy.

Everybody else: please be aware that there are those amongst us who do not experience the "reality" that we take for granted. They are still deserving or our compassion and respect. Be gentle, please.

PeteNYNJ · « **Reply #30 on:** January 17, 2010, 11:17:21 pm »

What does "the reality we take for granted" mean?

mecch · « **Reply #31 on:** January 17, 2010, 11:59:04 pm »

Quote from: livebythemoon on January 17, 2010, 10:13:06 pm

I believe it was Jan who said in the other thread that we had been taken for fools and that this person was just trying to stir a nasty pot. Guess that was correct.

At this point the right thing to do may be to have these threads locked, the link to that video removed, and [per the the forum rules] to cancel this person's access to our boards.

I disagree with locking and removing. At least not before a statement is made and ETAY has the chance to respond directly to the statement. Im not sure thats even necessary, or who would make it. His video speaks for himself quite clearly, as all the responders have spoken for themselves, as well. I don't hear him mounting much of an argument --- I just find him hopelessly in denial.

aztecan · « **Reply #32 on:** January 18, 2010, 10:22:47 pm »

I watched the video.

I'll say one thing for him, he has chutzpah.

I think Dame Jan is right.

I also think the tag line at the bottom of my posts says it all.

HUGS,

Mark

tednlou2 · « **Reply #33 on:** January 19, 2010, 01:24:42 am »

I WAS JUST READING THROUGH DR. GALLANT'S POSTS. IT APPEARS SOMEONE ASKED HIM ABOUT ETAY. I'M NOT SURE IF ANYONE HAS ALREADY DISCOVERED THIS. HERE IS THE Q&A:

Low CD4s, No Meds & Still OK?

Joel E. Gallant, M.D., M.P.H.

Posted on Jan 16, 2010
--------------------------------------------------------------------------------
There's someone on one of the HIV Forums who has had HIV since 1999. His numbers were OK for many years but have been steadily declining to the point where his last labs showed CD4s at 71 and VL at 498,670 on 11/09. His last reading before that was on 7/09: CD4s 267 VL 263K He says he feels great, totally healthy and was wondering if there were others like him. Someone cited a study from 2002 that looked at some individuals with low CD4s who were "relatively healthy" b/c they had high levels of natural killer cells. I believe that the people in that study did not have such high viral loads and for all we know they could all be dead by now if they never started ARVs. My questions are: are you familiar with this scenario of people who can remain healthy with low CD4s and high viral loads? Are you familiar with this study? Were there any follow-ups to see "where are they now"? http://www.aegis.com/pubs/aidswkly/2002/AW020104.html

On Jan 17, 2010 Joel E. Gallant, M.D., M.P.H. replied:

--------------------------------------------------------------------------------
It is not healthy to have a low CD4 count, and it's not healthy to have a high viral load. People like this who remain untreated risk serious illness, failure to achieve immune reconstitution when they DO start therapy, and death. Those who insist on remaining off therapy because of something they read about natural killer cells should do some reading of history: We know what happened to people with low CD4 counts before there was effective treatment: they died. There's no reason to repeat this experiment in 2010!

tednlou2 · « **Reply #34 on:** January 19, 2010, 01:29:25 am »

By the way, I PMed Etay with a copy of Dr. Gallant's response to make sure Etay sees it.

darkerpozz · « **Reply #35 on:** January 19, 2010, 01:47:59 am »

Etay,
I respect your decision to deal with your diagnosis whatever way you choose but don't think the church will change their views one iota to your dilemna due to the fact you "don't look sick", that's a whole different bucket of worms.
It amazes me how much you stirred up the folks in the forum and they(some) offered such heartfelt response.s and yet you seem to continue to not listen. It is your life and I do wish you the best and i will pray for you to my guide God. We in the black community have to help educate those around us and I think you are missing your opportunity to truly be a videovixen

Joe K · « **Reply #36 on:** January 19, 2010, 02:16:41 am »

I fail to see how your video is of any value, to anyone, except you. You say you know all about HIV, but if you did, you would not present such an irresponsible picture of living with HIV. I've lost hundreds to HIV, who would have crawled across broken glass, to access the drugs of today. If you want to ignore decades of treatment knowledge and wind up dead, then so be it. Tim, you are right, stupid is forever.

Hellraiser · « **Reply #37 on:** January 19, 2010, 02:48:58 am »

I can't help but feel this guy is just trying to get a reaction out of all of us. This is the last time I'll be viewing or posting in any of his threads. I'd advise (here's some of the advice he didn't ask for) the rest of you to do the same as his end goal seems only to provoke us and not ask our opinions about his poor decisions.

Snowangel · « **Reply #38 on:** January 23, 2010, 09:35:41 pm »

Etay didn't post this video on this website, he posted it on youtube, which I think took some balls. To me he was trying to show people that aren't positive that you don't know what this disease looks like. Like he said, even living with it, he did things with other "pozzies" without knowing because no one talks about it . Unfortunately, even in this day and age people still assume the what people look like and do is a sureway to tell if they are positive or not.
Personally, I don't understand why he is not taking meds but its not like he is in denial, he goes to an ID doc and he tells people of his status.
I can also relate to what he said about trying to go to support groups and feeling like you don't belong or have anything in common. I have felt the same and had the same things said about me, as far as being the facilitor. I stopped going to the support group I found around here, because people would just show up for the free bus passes and the free lunch after and have nothing to say. I have been sitting here trying to think if I have ever met another poz women in person that did not do hard drugs and sleep around and I don't think I have, until this past summer at the AMG. I have been poz going on 16 years. Not that I didn't enjoy meeting these other women or learn anything from them or that we didn't get along, but it is what it is, I didn't have a lot in common with them.
If Etay said he was on meds and was miserable, would everyone's reaction been different?

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Author Topic: Living with AIDS (Read 11553 times)