POZ Community Forums
Main Forums => Living With HIV => Topic started by: mozartian on February 24, 2014, 08:53:18 am
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I tested positive in 1992 after testing negative six months before and when I tested positive my T4 was 32, indicating full blown AIDS. They gave me 3-5 years to live. They put me on AZT, which a week later I rejected and there began a long line of experimental drugs up until today with the state-of-the-art more powerful drugs. It is now 22 years later and I am still here with a T4 around 300, stable, and have had no infections. I have explained it for myself that I had the virus a long time before it was indicated in the testing, since back in 1992 testing was still not all that completely accurate. Is there anybody else out there who has lived this long with full-blown AIDS?
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Welcome to the forum . I have been poz over 30 years so there are lots of us around .
Although there have been advances in HIV testing the test in 1992 were accurate as well .
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Hi, I tested poz in 1989, so 25 years. There's a section for us old timers, the long term survivors section of the forum. There's quite a few of us here.
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welcome to the forums. You'll find there are a lot of us around these forums whom outlived expectations. I tested poz 28 years ago and advanced to AIDS in 1989. 24 years old and dying of AIDS seems like a lifetime ago.
Hope to hear more from you, and hope you develop the same types of relationships with the great people here that I have.
best wishes
wolfie
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Another old timer here to welcome you! 31+ years poz. Glad you found the forums. :)
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I don't consider it full blown AIDS, just a shitty CD4 count. Diagnosed Feb 14 2003, sixty-ish CD4. Best count since then, 234. That was a good month. Usually in the mid 180's. Healthy as a horse otherwise.
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Welcome :D
I've had HIV/AIDS (tested POZ back in JUNE 87)
but, some of my new docs are saying I probably had
it way back in 79 to 81 when I had HEP A & B and 2 STD's :o
also was told that the onset of AIDS takes up to 10yrs. or more :(
anywho, you'll find some of us LTS a little jaded
but were still very much alive & kicking ;D
HUGS
DEN
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At my 29th year HIV positive listed in medical records.
Diagnosed with AIDS Related Complex in 1985. First CD4 count was 75. Given 2-3 years to live then.
Will be 61 years old this year.
Feel fine physically.
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Nice to hear from all of you. Ok, here is my next complication. In 2011, I was diagnosed with Parkinson's. I have a sixty three degree curve in my spine to the right and so my posture is off side. But I have relatively little pain and walk two miles daily, live in assisted living, and do artwork daily. I have read that having AIDS predisposes you to Parkinson's. Anybody have thoughts on all of this?
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I have not come across this before, however it would not surprise me for in the years to come a link may be established.
It too 2 years from 91 to 92 to diagnose me Hodgkin Lyn , part off it was nobody was looking for it , now presenting the same symptoms a diagnosis would be quicker.
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THEY USE TO SAY THAT ANYBODY WHO HAD LESS THAN 500 CELL CT HAD FULL BLOWN AIDS.I TESTED POSITIVE IN 1988 AND HAVE NOW HAD A RECENT LAB WHICH HAS INDICATED THE HIGHEST CT I HAVE EVER HAD IN THE PAST 24 YRS AT 402.I USE TO GET SO FRUSTRATED THAT AMONG ALL MY FRIENDS ,I ALWAYS HAD THE LOWEST CT EVEN THOUGH WE WERE ON THE SAME MEDS!!!THIS IS NOW 2014 AND I AM THE ONLY ONE STILL ALIVE.I HAVE OFTEN WONDERED IF MAYBE THIS WAS GOD"S WAY OF PUNISHING ME !!!.....PLEASE EXCUSE ALL THE CAPS!!!
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To all those oldies - keep going strong. Their is life after being diagnosed HIV pos - You have all shown us it can be done. Thanks for encouragement and for all the positive stories - I know that there are many many sad stories as well, but we all will conquer.
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I might add also that at my last complete physical examination with my doctor, he said that looking at the big picture considering all my test results and having two incurable diseases (Parkinson's and AIDS) "You are healthier now than you have ever been since testing positive."
Deny the Disease. Do not give it entrance. Tell it to get out.
You are as healthy as you think.
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Isn't the definition of full blown AIDS still "below 200 T4"? I was under the assumption that it was not an arbitrary call. That it was specifically defined.
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Isn't the definition of full blown AIDS still "below 200 T4"? I was under the assumption that it was not an arbitrary call. That it was specifically defined.
An HIV patient who has a current or prior diagnosis of an Aids defining condition with a CD4 count of <200 and <14% of total lymphocytes
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Isn't the definition of full blown AIDS still "below 200 T4"? I was under the assumption that it was not an arbitrary call. That it was specifically defined.
I've never heard a doctor use the term "full blown AIDS" -- I've only heard it on Family Guy or some TV show, or on a web forum, or someone gossiping in a gay bar. I don't think it's really an actual clinical term.
When I was <200 cd4 count I didn't have an opportunistic infections. Yes, technically by CDC definitions I had AIDS but there wasn't anything "full blown" about it. Does that mean I was "half blown"?
I think most use the World Health Organization standards of clinical staging, which have been updated over the years: http://en.wikipedia.org/wiki/WHO_Disease_Staging_System_for_HIV_Infection_and_Disease_in_Adults_and_Adolescents
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An HIV patient who has a current or prior diagnosis of an Aids defining condition with a CD4 count of <200 and <14% of total lymphocytes
HIV infection, stage 3 (AIDS): CD4+ T-lymphocyte count of <200 cells/μL or CD4+ T-lymphocyte percentage of
total lymphocytes of <14, or documentation of an AIDS-defining condition. Documentation of an AIDS-defining
condition supersedes a CD4+ T-lymphocyte count of ≥200 cells/μL and a CD4+ T-lymphocyte percentage of total
lymphocytes of ≥14
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I tested positive in 1992 after testing negative six months before and when I tested positive my T4 was 32, indicating full blown AIDS. They gave me 3-5 years to live. They put me on AZT, which a week later I rejected and there began a long line of experimental drugs up until today with the state-of-the-art more powerful drugs. It is now 22 years later and I am still here with a T4 around 300, stable, and have had no infections. I have explained it for myself that I had the virus a long time before it was indicated in the testing, since back in 1992 testing was still not all that completely accurate. Is there anybody else out there who has lived this long with full-blown AIDS?
I was advised early on by my ID doctor to not get caught up with the numbers and don't stress yourself on the numbers. He stated that you'll know what you can do and when to back down and take a break if needed. He also said don't change anything that you don't feel needs to change in your daily life. When I was diagnosed with HISTO and AIDS. I was told I was "full blown" and he explained the medical terminology it was a numbers game and he wasn't concerned about the AIDS as he was the HISTO. Now going on 30 years this April with an AIDS diagnoses for the past 8 years I still do what I can. Today I don't worry about by numbers, don't get me wrong I take a look at them but I don't get concerned. I just continue to move along and remind myself that there are others out there that don't have AIDS that are in a lot worse shape than I'm in and to be grateful. That is how I deal with Living with HIV.
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I think most use the World Health Organization standards of clinical staging, which have been updated over the years: http://en.wikipedia.org/wiki/WHO_Disease_Staging_System_for_HIV_Infection_and_Disease_in_Adults_and_Adolescents
Clinical stage 4 HIV infection sound classier than full blown AIDS. ;)
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Hello Mozartian,...
Welcome to the forums ! Another LTS'er Here... Diagnosed positive in 1985, Aids by 2003. Started HAART October of 2003
Currently doing alright, a few issues now and then, Just got to know when to slow down, and take it easy. Plus the age thing !
One step at a time !
Ray
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Congrats for retirement!
Mobile.eric
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I AGREE WITH YOU 100% RAPIDRON
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RAPIDROD :D
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Is there anybody else out there who has lived this long with full-blown AIDS?
technically now that your count is above 200, you don't have AIDS anymore. ;D WooHoo!
However, I will agree with you on the "full-blown" part. Anyone who has been in a hospital with <50 cd4s, VL in the millions, and in the process of nearly dying from an OI, well, those people understand all too well what "full blown" means. ;)
I've been poz for 30 yrs now and it's been 22 yrs since my AIDS diagnosis and like you my cd4s barely hang around the 300 mark. Welcome to our club. ;D According to a POZ article I read back in Sept 2013 (http://www.poz.com/articles/older_and_wiser_2791_24349.shtml), there's only about 50k of us left over from the bad ol' days.
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I have thought from the very beginning of this disease and I think more so even now after getting all these definitions and opinions, that it would all be simpler and clearer if the disease was simply called "AIDS". Get rid of the HIV confusion that makes people think you DON'T have it even when you in fact DO. As I see it, you either have the virus or you don't. If you have it, you have AIDS. If you don't have the virus, you don't have AIDS. You either have the virus or you don't. What is the purpose in having all this gray area in between? It especially confuses the public.
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I have thought from the very beginning of this disease and I think more so even now after getting all these definitions and opinions, that it would all be simpler and clearer if the disease was simply called "AIDS". Get rid of the HIV confusion that makes people think you DON'T have it even when you in fact DO. As I see it, you either have the virus or you don't. If you have it, you have AIDS. If you don't have the virus, you don't have AIDS. You either have the virus or you don't. What is the purpose in having all this gray area in between? It especially confuses the public.
Butt flu has a nice ring to it too .
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Yes, let's give it a new name.
Something like "gay rights". He has "gay rights".
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And then there is Magic Johnson who has an undetectable viral load and tries to convince the media that he doesn't have it anymore. I mean, who gave him the mike?
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And then there is Magic Johnson who has an undetectable viral load and tries to convince the media that he doesn't have it anymore. I mean, who gave him the mike?
That is false, he's never said that.
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Sometimes the media reports things incorrectly.
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I have thought from the very beginning of this disease and I think more so even now after getting all these definitions and opinions, that it would all be simpler and clearer if the disease was simply called "AIDS". Get rid of the HIV confusion that makes people think you DON'T have it even when you in fact DO. As I see it, you either have the virus or you don't. If you have it, you have AIDS. If you don't have the virus, you don't have AIDS. You either have the virus or you don't. What is the purpose in having all this gray area in between? It especially confuses the public.
I dont agree with this view.
Some HIV+ people have AIDS - for a few different criteria and/or past histories.
People can easily have untreated HIV today and get AIDS and die.
Many HIV+ people are going to age over decades to come and what they end up with will have little to do with a lot of how "AIDS" was defined for, let's say, the first 20 years of the HIV epidemic.
I am HIV+ but I don't have AIDS.
How does your simplification help matters at all?
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Do you have the virus?
Or do you not have the virus?
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Sure. The virus is called HIV. I have it. Its not killing me and its considered effectively controlled for the long run. What happens when Im 70, we will see. I don't have AIDS. NO medical expert I have seen has ever told me I have AIDS and in fact have taken pains to explain that my experience as HIV+ is not the same as someone who has AIDS or once had AIDS.
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I can see this is going to be hard to sell to those not diagnosed under the current definition as having AIDS. My point is that the virus does not come and go. Once you get the virus, it does not go away. If it went away, then we would have a cure. But we don't have a cure. So there are people in the world who do not have the virus and there are people in the world who do. It is black and white.
I am not using the current definition. I am proposing a new definition.
Do not confuse the two.
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Are we beinging Punk'd????
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Yes.
So alls I know is that I had AIDS two days ago and now after starting to comment here, I don't have AIDS anymore. Thanks guys, you changed my life.
Yeah!!!!!!!
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Mozartian, you are right that it isn't easy to educate the world about the different experiences of being infected with HIV.
You can propose any "new definition" you please. But doctors, public health professionals and epidemiologists don't seem to have a problem with the current use of "HIV+" for people infected with HIV. What happens along the way can be very diverse.
It isn't "black and white" and the way forward is knowledge coming from the experts - on the various prognosis of living with HIV.
One of the themes of the thread is learning to give context to loaded terms as "full-blown AIDS" - to "unpack" its meanings so as to respond psychologically, medically and socially to such terms, and knowing who they apply to, and who they may not apply to.
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I have thought from the very beginning of this disease and I think more so even now after getting all these definitions and opinions, that it would all be simpler and clearer if the disease was simply called "AIDS". Get rid of the HIV confusion that makes people think you DON'T have it even when you in fact DO. As I see it, you either have the virus or you don't. If you have it, you have AIDS. If you don't have the virus, you don't have AIDS. You either have the virus or you don't. What is the purpose in having all this gray area in between? It especially confuses the public.
Morartian,
I am confused on why you resist the distinction between being HIV positive and being diagnosed with AIDS. Historically, an AIDS diagnosis is what you needed to get disability, as being just poz was not considered as sufficient to warrant the payment of disability claims. In the early years, they keep massaging the term "AIDS" until they reached a consensus on what having AIDS really meant in terms of your health. An AIDS diagnosis was also used to allocate federal funds, based on the number of AIDS patients that lived in a given geographical location.
There has always been a method to the madness and to be honest, the designations of poz or AIDS is for the benefit of the patients, doctors and administrators and not the general public.
Joe
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Welcome Mozart!
'Im a Short Term Survivor, starting my 6th year with HIV.
glad to have you here!
-Will
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Is there anyone out there who has Parkinson's or any kind of degenerative nerve disease that developed after their diagnosis of AIDS?
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It is enlightining and gives us great hope for a long survival after reading these posts!! 20, 25 or 30+ years surviving HIV is awesome.. I just hope I can be counted into this group.. I was diagnosed on Aug 13 and started on Stribild on Sept 21...I think it is a marvelous med....My cd4 was 190 (and my Dr. said not to get fixated on that number or the label 'AIDS', she said it will get better I promise and it has!) and VL was 72K... I felt sick really sick only once but had a rapid weight loss which no one could explain!!! Then bam! The bombshell! I am HIV+...It has been difficult and so far I am doing this by myself, alone. I haven't disclosed status to anyone! This solitude is awful, but I am not ready to let the world know...I envy those that have been able to open up! But not all of us are ready! Last doctor visit VL was UD and Cd4 had climbed to 292!!!
Thank you all of you for sharing and allow us, newbies, to garner strength and hope!!
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Hey JosephP. Glad to here the meds are working. I was diagnosed just under 2 years ago and just started with meds 3 weeks ago, so I look forward to my first results in just over 2 months time. I also only found out because I got Meningitis. It was scary at first but I have told partner and a small group of friends and my brother. Everyone has been supportive. I don't believe the whole world needs to know but it is helpful to have people you can lean on, even if you just rely on us here on the forum. All the best.
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YAY Joseph and YAY Tony, you're both on the right track. You'll both be fine.
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Can someone tell me what the current medical definitions are for AIDS and HIV Positive? Here are the last two I remember -
AIDS - HIV infected with T4 below 200 and/or one opportunistic infection. Once classified as having AIDS, you remain classified as that even if T4 goes above 200
HIV Positive - HIV infected with T4 above 200 and no opportunistic infections.
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I think you got the definitions correct . The lines have blurred greatly about what those definitions means to us since the 3 drug combo came about . If you have a CD4 count at or consistently below 300 ish then a prophylaxis is needed to prevent PCP but with the new meds treatment means a pretty quick recovery back to a normal life span with just a little luck .
May I ask why you ask ? .
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If you have a CD4 count at or consistently below 300 ish then a prophylaxis is needed to prevent PCP
below 200 ;)
it's easy to remember: if you have "aids" you need Bactrim, just in case
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below 200 ;)
it's easy to remember: if you have "aids" you need Bactrim, just in case
My doc had me on bactrim for over 15 years and didn't let up till I my cd4 was 300 and thats why the number sticks in my head ... he was a cautious type . Thanks .
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since I started with a t4 count below 200 are you saying I will always be classified as having AIDs even if count rises above 200? After a year and a half of treatment my vl is undetectable but t4 count still not above 200. Getting close but not there yet. To some it may be a matter of semantics, but reading these posts I find it matters to me.
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Why does it matter to you?
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I am wondering the same thing thing as Miss P and would like to know the motivation for the question because it matters .
If the definition is 200 then I have had aids a dozen times with my numbers back and forth from lab to lab . Im not finding fault with asking an honest question just trying to understand . I have said it before ... Aids, hope I never get that again .
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This is quite a broad question. From a legal standpoint? a medical viewpoint? A tracking and reporting aspect? A lot of the "standards" come (IIRC) from the CDC when it was necessary to track new infections and keep track of how many were getting sick, already sick or already dead. Those standards were set in place at a time that when you got AIDS there wasn't much of a chance of having UNAIDS. ;)
I'll always be classified as living with AIDS...so what? From a personal viewpoint, I'm person who is living with HIV and don't plan on dying anytime soon.
Perhaps being more specific can help us address it.
wolfie
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My doc had me on bactrim for over 15 years and didn't let up till I my cd4 was 300 and thats why the number sticks in my head ... he was a cautious type . Thanks .
I stayed on bactrim for 12 yrs until I consistently stayed over 275. LOL My doc kept trying to take me off after i remained at 225; but I kept reminding him of my 3 bouts of PCP that were happening every other year. When the choice was bactrim or PCP... well, there's really not much of a choice there. LOL
Perhaps being more specific can help us address it.
Are we beinging Punk'd????
hmmm, we've actually had this conversation, this exact same conversation, with mozartian once before.
22 years now with full blown AIDS (http://forums.poz.com/index.php?topic=52871)
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Thanks for the catch Leatherman ... I merged this thread for context . It does seem like a discussion on semantics to the OP . Mystery solved .
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Is the term "full blown AIDS" even part of the modern day vernacular? I think it was common back when to indicate that a person was wracked with many OI's and the prognosis didn't look promising.
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It matters to me because I want to refer to my condition of having the AIDS virus with the proper terminology. If all of us with the virus have our own definitions then it becomes almost impossible to communicate because when one person says "I do not have AIDS" he may have a definition that is completely the opposite as the next person who says "I do not have AIDS".
The definitions are in place by the CDC and the government to keep all the people who have the virus from getting disability. Only the ones that are called "AIDS" can now get disability. These were highly controversial definitions that were argued about in the late 1980s when there were a lot of people trying to keep all the people who were gay from getting disability. If they are ever changed I can see just by the response I have gotten here that this will be a very hot topic and especially for the people that are not now classified as having AIDS. These people want to maintain their right to say "I do not have AIDS", even though they have the virus.
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I think it was common back when to indicate that a person was wracked with many OI's and the prognosis didn't look promising.
sadly that still happens today.
An estimated 15,529 people with an AIDS diagnosis died in 2010 (http://www.cdc.gov/hiv/statistics/basics/ataglance.html)
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A low CD4 count is not enough to insure a disability finding if a person applies ... there are other medical criteria that must be met . I do not think the definition of the word Aids is a factor in the way you are suggesting .
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Mo, I believe you're the only person making this a "hot" topic. You've still not revealed exactly what issue you're having in relation to the terms. From a practical standpoint, I refer to myself as and UD positive person, not a person previously living with AIDS. I will always be counted as one of the AIDS statistics, but it has no everyday relevance.
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Is everyone out there who is called AIDS on disability?
Is there anyone out there who is called HIV Positive on disability?
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Is everyone out there who is called AIDS on disability?
Is there anyone out there who is called HIV Positive on disability?
Yes to both questions . < I should have read more carefully . I meant to say that there are people who fit both definitions who are on disability .
I had Aids and am now living with HIV and I am on disability .
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I have AIDS and I'm not on disability
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Is everyone out there who is called AIDS on disability?
Is there anyone out there who is called HIV Positive on disability?
CD4 count is irrelevant to SSDI criteria. It's based on a long list of qualifying medical situations associated with HIV with an emphasis on impaction of "functional capacity".
http://www.ssdrc.com/hiv2.html
Also, mental health treatment (documented) can be factored into a decision to grant benefits.
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Is this concerning benefits? Why refuse to to simply state concisely what you're truly inquiring about?
Beyond that, I have nothing further to add. Not in the mood to solve riddles this morning.
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Thanks for the link ms.P, Hey I got somthing new outta this thread.. I could quit my job and go on disability ;)
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My viral load is zero. They cannot see the virus anymore. I got cured.
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My viral load is zero. They cannot see the virus anymore. I got cured.
You can write a book called The Man Who Wanted Aids . I only have Aids when friends call and want help moving .
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Is everyone out there who is called AIDS on disability?
Is there anyone out there who is called HIV Positive on disability?
Nobody is called AIDS or HIV positive, as we each have actual names. You either HAVE AIDS or you ARE HIV positive, or both.
There is also no such thing as the AIDS virus. It is called HIV that can progress to AIDS.
Semantic gymnastics and a total waste of time.
Joe
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The definitions are in place by the CDC and the government to keep all the people who have the virus from getting disability. Only the ones that are called "AIDS" can now get disability. These were highly controversial definitions that were argued about in the late 1980s when there were a lot of people trying to keep all the people who were gay from getting disability.
paranoid much?
My viral load is zero. They cannot see the virus anymore. I got cured.
I too really don't understand your issue.
HIV positive = positive reaction for HIV antibodies and/or having a detectable viral load
AIDS = a condition brought on by HIV infection, defined by high VL, low CD4s and OIs
your "true" viral load is NOT zero. Each of us who are HIV infected, UD or not UD, have reservoirs of HIV which reside in lymph nodes, the brain, etc.
there is no cure for HIV. once you are dx'ed HIV positive and/or with AIDS, you will always be HIV positive regardless of your UD or non-UD viral load. (Actually once a cure is found, some definitions may have to change as those who are HIV+ will always test poz for HIV antibodies, so that criteria will need to be changed; but that is a long way in the future) Once you are diagnosed with AIDS, for medical and financial reasons, you will always be listed as having AIDS. This dx will not only assist with access to healthcare and financial assistance; but will make sure that subsequent doctors take into account that your system was at one point that damaged.
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I could quit my job and go on disability ;)
that is much, much less likely these days. Modern medicines are able to quickly restore someone back to good health these days - even those who have been dx'ed with AIDS. a disability evaluation is based a person's health (mental and/or physical) being severely negatively impacted for a long time.
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mozartian - what's your point? Do you need to discuss something? Cut the cryptic comments and spell it out, clearly. We don't understand what you want to discuss.
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My Tcell count is 415, my vl is undetectable. I once had a T cell count of 32. Do I have AIDS? If not, then what is it called? That is what I want to know.
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My Tcell count is 415, my vl is undetectable. I once had a T cell count of 32. Do I have AIDS? If not, then what is it called? That is what I want to know.
If you live in the US, for data collecting statistics you are living with AIDS. I think when one reads a CDC annual report for a state, metropolitan area or county they group them in AIDS category and HIV category.
But clinically speaking a doctor would list you in a prognosis report as "HIV, symptomatic/AIDS" (that is what mine says -- I was diagnosed 21 years ago with <200 cd4 but currently have +1000).
I still don't understand why you're having such a difficult time grasping this, or even what purpose it serves you at the end of the day.
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My Tcell count is 415, my vl is undetectable. I once had a T cell count of 32. Do I have AIDS? If not, then what is it called? That is what I want to know.
Join the club! ;D
You had AIDS; you are HIV positive.
this is not rocket science. though medically you are listed as having had AIDS, feel free to call yourself HIV positive. did you even read my post??
HIV positive = positive reaction for HIV antibodies and/or having a detectable viral load
AIDS = a condition brought on by HIV infection, defined by high VL, low CD4s and OIs
there is no cure for HIV. once you are dx'ed HIV positive and/or with AIDS, you will always be HIV positive regardless of your UD or non-UD viral load.... Once you are diagnosed with AIDS, for medical and financial reasons, you will always be listed as having AIDS. This dx will not only assist with access to healthcare and financial assistance; but will make sure that subsequent doctors take into account that your system was at one point that damaged.
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You said once you are listed as having AIDS, you will always be listed as having AIDS. So on one person's list I have AIDS and on another person's list I am HIV Positive.
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I am wondering the same thing thing as Miss P and would like to know the motivation for the question because it matters .
If the definition is 200 then I have had aids a dozen times with my numbers back and forth from lab to lab . Im not finding fault with asking an honest question just trying to understand . I have said it before ... Aids, hope I never get that again .
if you cd4 goes below 200, would you still get meds to prevent OI? wouldn't that be called AIDS?...I don't know...and I'm like you Jeff, I don't want to have AIDS again
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You said once you are listed as having AIDS, you will always be listed as having AIDS. So on one person's list I have AIDS and on another person's list I am HIV Positive.
Your name is not on any list, AIDS or not. The diagnosis is used for statistical purposes, not to track actual people by name.
Joe
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to quote leatherman, the phrase was
"You will always be listed as having AIDS."
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to quote leatherman, the phrase was
"You will always be listed as having AIDS."
Tell us again why its personally important to you that it only be called Aids ? What do you hope to be accomplished or solved for it to only be called Aids ? . I really am trying to understand .
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mozartian has been totally misunderstood
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ojo thanks guys...I did learn something new today . Its like if I were to look for benefits today, my AIDS dx would help my case?....ojo
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mozartian has been totally misunderstood
No doubt!!! No one has any idea what the hell you're trying to express
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You said once you are listed as having AIDS, you will always be listed as having AIDS. So on one person's list I have AIDS and on another person's list I am HIV Positive.
whose lists are you talking/worrying about?
Are you worried about how your doctor "lists" you? your medical records - your private HIPPA medical records - will always say that you had AIDS. What's the big deal? Don't you want your treating physicians to treat you properly? Your medical records should also have data about when you were 12 too.
Are you worried about state or federal government lists? while someone is actually dealing with an AIDS condition, they are listed, by state government tracking, as just another number of the people living with AIDS and as another number to the list of people living with HIV. (because you are both at that point) When you get past the AIDS stage, the state subtracts one from their "aids" number. (btw these numbers, PLWA and PLWH, are incredibly important. These numbers help determine federal money given to the states for prevention and treatment.)
ojo thanks guys...I did learn something new today . Its like if I were to look for benefits today, my AIDS dx would help my case?....ojo
Nope. Maybe back when you had been sicker; but seven yrs later, nope. having aids a long time ago won't help you get disability today.
it's been seven years and change and still VL UD and cd4 498
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ojo thanks guys...I did learn something new today . Its like if I were to look for benefits today, my AIDS dx would help my case?....ojo
I wish I had better news but I'm jumping through hoops with getting on disability myself because my numbers are good. It takes so much more these days. I will be 32 years Poz in October. I enjoyed working when I was able.
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I am confused as hell. What do I have? ::)
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I am confused as hell. What do I have? ::)
If I am remembering it right you got the bath house aids .
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If I am remembering it right you got the bath house aids .
Good call Jeff ;)
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I wish I had better news but I'm jumping through hoops with getting on disability myself because my numbers are good. It takes so much more these days. I will be 32 years Poz in October. I enjoyed working when I was able.
ojo Hi mitch...I feel bad now for all of those who are looking for disability benefits, if an AIDS dx isn't enough to get help....I will be 20 years poz in November, I had to retired from work in 2000 because I'm legally blind due to CMV, I worked until I couldn't get my driver's license renewed, I miss work, specially my good checks, now I get social security and my pention from work....I remember durong the years 97 t0 2000, my last rear working, I would go to work with awful pain from neuropathy, but I had to work, because I loved what I was doing, anyway...I guess now the new meds are no toxics like the ones we older dx went through....thx mitch this thread is interesting, tho eventhough my cd4 is 498 I still consider my self with AIDS, cause my body is so beaten up, I lost a friend of only 30 years old to Lymphoma having 320 cd4 and there is a person in here, that I would ;ike to call friend who has made it through the same lymphoma (wich I'm pretty happy for him)that killed my friend in March...thanks guys ojo
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mozartian - People have tried to be helpful and they have been generous with their time. However you don't offer any clarification nor respond to any questions.
My opinion, is you seem rude. Maybe that's not true, and you are clueless how communication works.
in this thread, it appears to me you are trolling the forum, sucking energy but retuning little.
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mozartian has been totally misunderstood
If you have been misunderstood, why don't you tell us what you really want from us? We are trying to help, but you haven't given us much to understand.
Joe
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If I am remembering it right you got the bath house aids .
You don't contract AIDS, just the virus that can lead to it. :o So technically, Drew got the bath house HIV. lol
I got mine the old fashion hillbilly way. I has me the vintage 80's AIDS version. Or do I now just have HIV? I'm so confused.
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Your name is not on any list, AIDS or not. The diagnosis is used for statistical purposes, not to track actual people by name.
Joe
Have to disagree with you, I am listed with the Ohio Department of Health as having AIDS.
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Have to disagree with you, I am listed with the Ohio Department of Health as having AIDS.
Yeppers! You are right Rapid. I knew that because I lived in OH when dx'ed. I also knew I was on "the list" in SC because of the interview with the health dpt when I moved here. However, I did some research and learned some more about these lists. ALL of us in America who are HIV positive are on a state list now, listed by name; however the CDC/federal gov't only has statistical data without names.
Beginning in 1985, many states implemented HIV case reporting as part of an integrated HIV and AIDS surveillance system. As of 2008, all states had implemented confidential, name-based HIV infection reporting. Beginning in 2013, CDC began referring to AIDS as HIV infection, stage 3 (AIDS) in all HIV surveillance products.
http://www.cdc.gov/hiv/statistics/recommendations/publications.html
NAMES-BASED REPORTING
Since the beginning of the epidemic, AIDS cases have been reported to state health departments using name-based reporting. This is now also true for HIV cases. This means, if you test positive for HIV or another STD, the test result and your name will be reported to the state and local health department for the purposes of public health surveillance. Only public health personnel have access to this information at the state level and use this information to get better estimates of the rates of HIV in the state. The state health department will then remove all personal information about you (name, address, etc.) and share the remaining non-identifying information with the CDC so they can best track national public health trends. The CDC does not share this information with anyone else, including insurance companies.
http://www.aids.gov/hiv-aids-basics/prevention/hiv-testing/confidential-anonymous-testing/
dang! ;D All I did was complicate things with this post. (and probably freaked out the people afraid to be on "the list". I'm looking at you mozartian LOL) AIDS isn't AIDS anymore. It's now called "HIV infection, stage 3"
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Have to disagree with you, I am listed with the Ohio Department of Health as having AIDS.
Same here,.... When I renewed my 6 month authorization for Ryan White, here in Florida, two weeks ago there were two boxes. One was " HIV positive" The other "AIDS". The "AIDS" box was checked. This is the info that goes to the Florida dept of Health.
Ray
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Yeppers! You are right Rapid. I knew that because I lived in OH when dx'ed. I also knew I was on "the list" in SC because of the interview with the health dpt when I moved here. However, I did some research and learned some more about these lists. ALL of us in America who are HIV positive are on a state list now, listed by name; however the CDC/federal gov't only has statistical data without names.
http://www.cdc.gov/hiv/statistics/recommendations/publications.html
http://www.aids.gov/hiv-aids-basics/prevention/hiv-testing/confidential-anonymous-testing/
dang! ;D All I did was complicate things with this post. (and probably freaked out the people afraid to be on "the list". I'm looking at you mozartian LOL) AIDS isn't AIDS anymore. It's now called "HIV infection, stage 3"
After 30 plus years I don't even care. It is what It is. I'm alive, heath is pretty good and have out lived a number of my friends that wasn't positive, so I'm very thankful for that.
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After 30 plus years I don't even care. It is what It is. I'm alive, heath is pretty good and have out lived a number of my friends that wasn't positive, so I'm very thankful for that.
EXACTLY!!!!
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What is considered the "cutoff" between having full blown aids and being hiv positiven and how did this number come to be? I've never understood clinically how some arbitary cd4 count number could mark a borderline between having full blown aids and being hiv positive.
When I first began treatment my cd4 had been consistently in the upper 200s for a year or so, and my viral load on my very first lavs was about 48,000. I forget the exact numbers, but I know I didn't have full blown aids. I was poz for several years before I sought treatment though, so maybe technically I was at some earlier point, but I'll never know, and other than my bad seroconversion experience, I never had any major health problems.
After a few months on meds my cd4 went up into the 600s where it remains today, and I've been undetectable ssince 2010. I could have not started meds when I did, my doctor left the decision to me, but I wanted to do it to see how I'd feel. It's such an individual personal decision for ach person. I have a friend whos never been on meds he has a very high viral load like around 100,000 but he feels great.
Which is the number doctors look at the most? Is it viral load cd4 or cd%? My doc told me once that cd% was more telling, but my primary doc always asks me what my cd4 count is on my 6 month checkups. Just wondering what is the most clinically important number in regards to counts.
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What is considered the "cutoff" between having full blown aids and being hiv positiven and how did this number come to be? I've never understood clinically how some arbitary cd4 count number could mark a borderline between having full blown aids and being hiv positive.
When I first began treatment my cd4 had been consistently in the upper 200s for a year or so, and my viral load on my very first lavs was about 48,000. I forget the exact numbers, but I know I didn't have full blown aids. I was poz for several years before I sought treatment though, so maybe technically I was at some earlier point, but I'll never know, and other than my bad seroconversion experience, I never had any major health problems.
After a few months on meds my cd4 went up into the 600s where it remains today, and I've been undetectable ssince 2010. I could have not started meds when I did, my doctor left the decision to me, but I wanted to do it to see how I'd feel. It's such an individual personal decision for ach person. I have a friend whos never been on meds he has a very high viral load like around 100,000 but he feels great.
Which is the number doctors look at the most? Is it viral load cd4 or cd%? My doc told me once that cd% was more telling, but my primary doc always asks me what my cd4 count is on my 6 month checkups. Just wondering what is the most clinically important number in regards to counts.
"full-blown aids" - certainly not a diagnosis now and wonder if it ever was one. I wonder if docs used that term.
Robby people were diagnosed with "AIDS" based on CD4 count AND opportunistic infections.
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Thanks for the clarification. I used the term full blown aids, but actually when you think of it, it seems to be a rather archaic term more suitable for the 80s or 90s than today. It's probably more of a cultural term than a medical one for sure. It definitely has a negative connotation and I've never been comfortable using it. I don't hear many use it, certainly none of my dcotors ever have that'd I've heard.
No doubt the term "aids" was thrown around a lot more in the old days to not only stir up fear mongering, and ostracizing, but also because at that time the virus just wasn't understood.
There's still a distinction of course, but I'm glad more people are aware that hiv and aids are NOT the same. And really, it's nobodys business except the patient and their doctors! Like I said I have a friend who technically has aids but he's healthy as can be and is a great guy. That's his life and I respect it.
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AIDS is still a diagnosis used by clincians. It is a also listing used by the Social Security Administration to determine disability. If you are taking Bactrim, you have AIDS.
For disability determination purposes, the Social Security uses a more stringent eligibility process than what your state's Medicaid program or your healthcare provider uses.
The Social Security Administration is updating their most recent listing for HIV/AIDS for 2014:
http://www.gpo.gov/fdsys/pkg/FR-2014-02-26/html/2014-04124.htm
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No doubt the term "aids" was thrown around a lot more in the old days to not only stir up fear mongering, and ostracizing, but also because at that time the virus just wasn't understood.
There's still a distinction of course, but I'm glad more people are aware that hiv and aids are NOT the same. And really, it's nobodys business except the patient and their doctors! Like I said I have a friend who technically has aids but he's healthy as can be and is a great guy. That's his life and I respect it.
AIDS was and remains a real diagnosis, Robby. AIDS was never "thrown around" by doctors as a term to do any such thing, as you suggest, in the old days. People got sick with HIV to a point where they had an AIDS diagnosis. Doctors aren't in the business of fear mongering and ostracising.
If you are talking about the public and the media, however, have at it.
One point of the thread is to help people understand the difference between why doctors and epidemiologists and health officials call things, back then, and now. And how that differs from what the public might say, or believe.
So yeah I like your second paragraph, above. ;D
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Thanks for the clarification. I used the term full blown aids, but actually when you think of it, it seems to be a rather archaic term more suitable for the 80s or 90s than today. It's probably more of a cultural term than a medical one for sure. It definitely has a negative connotation and I've never been comfortable using it. I don't hear many use it, certainly none of my dcotors ever have that'd I've heard.
No doubt the term "aids" was thrown around a lot more in the old days to not only stir up fear mongering, and ostracizing, but also because at that time the virus just wasn't understood.
There's still a distinction of course, but I'm glad more people are aware that hiv and aids are NOT the same. And really, it's nobodys business except the patient and their doctors! Like I said I have a friend who technically has aids but he's healthy as can be and is a great guy. That's his life and I respect it.
ojo Hi robby.....I think we are talking about esperinces here, I was told in 1994 I had full-blown-aids, not just ones, but twicw, by the ER doc and my ID doctor, my cd4 was 20...I'm glad you didn't get to the point of needing "help" (your immune system) to prevent or help your body to fight an infection....I think, it lies in here the term "AIDS", when your body need help (immune system) to defend itself....I don't think that AIDS is a term to scare people, it is a syndrome....AIDS still exist, that's why there are still conferences, to try to find a cure....in short, I think you can say that you have AIDS when your doctor gives you meds to prevent infections because a little guy call HIV have destroyed your defenses (cd4)is only a thought ojo
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ojo I forgot....having HIV is scary too....ojo
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This is a great discussion it's helped me learn a lot I hand tknown before about aids and hiv and the differences. I think there is still a big cultural stigma and misuse of the word "aids" but you are right it is a very real diagnosis still. I actually knew a guy who died of aids related complications several years ago. He was full of life and then I didn't see him for a long time but when I did the poor guy looked deathly sick. Not sure what happened but from what I gathered he simply hadn't gotten tested or knew he was poz and when he did his immune system was in bad shape and he endedup wasting away and dying of pneumonia I believe. It was so sad to lose him and see him suffer, and this was in about 2007! So yes aids is still very real medically no doubt. I constantly count my blessings that my overall health is reasonably good. Having hiv helps put things in perspective I try and never take things for granted.
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as far as what difference the distinction can make... in my state, my clinic only treats patients with aids dx. they will absolutely without apology wait until you're near death before they even speak to you, much less bother taking your blood pressure
but i live in a red state below the bible belt, no secret they just want us to die, and be quick about it
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This is a great discussion it's helped me learn a lot I hand tknown before about aids and hiv and the differences. I think there is still a big cultural stigma and misuse of the word "aids" but you are right it is a very real diagnosis still. I actually knew a guy who died of aids related complications several years ago. He was full of life and then
You are right, your numbers (immune system) wasn't damage as like mine, but I survived "ful-blown-ais_, or aids, is just a terminology, but is still a dead sentence for those who don't test tnemself, or don't stick to the treatment...now eventhough my numbers are 498, I still check my body for any changes, bumps, nodes, etc, watch what I eat and especially where I eat (clean paces), wash my hand, etc, etc, because now with hiv/aids we have to be vigilant of our bodies...I mentioned before, a friend of mine, died of lymphoma non Hodgkin's, even tho his cd4 were 320, his cancer was caught late, that's why he died....pneumonia it was the caused that people with aids were dying in the 80's, and you said that your friend died in 2007..that's the proof that aids still kills...good luck, and take care of yourself, the drugs are so good now, that they avoid you gettings aids (help for your immune system to fight infection) ojo
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as far as what difference the distinction can make... in my state, my clinic only treats patients with aids dx. they will absolutely without apology wait until you're near death before they even speak to you, much less bother taking your blood pressure
but i live in a red state below the bible belt, no secret they just want us to die, and be quick about it
ojo Zach, I'm really sorry for all the people you mention on your post, the most disgusting thing is that they talk about the bible, where is the compation...I've seen a lot of your messages, but I haven't read them all, cause my eye doesn't help me, but today I read about you disclosing, I'm sorry, but who ever is rejecting you, there weren't your friend, the rest of the people can go and read the bible, don't you think?..I'm with you, with hiv or aids, you seem a pretty likeable guy,,you can count on me for sure ojo
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hey pochas, i may be wrong, but you're not in america are you?
its a figure of speech, the bible belt refers to an imaginary line (basically the south) that has traditionally leaned fundamentalist baptist. although i have some family, and a couple friends, that drink a little too much holy water, i'm pretty cool with freedom of religion. i give em all hell
i know it sounds like a great line that makes it easier to let go of loved ones. but its not entirely accurate.
it hurts to lose people. i accept people completely, flaws and all. when you've loved someone for a lifetime, losing them, even by rejection or betrayal... it hurts
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hey pochas, i may be wrong, but you're not in america are you?
ojo hi Zach, I've lived in Ohio for the last 25 years, , and yes, I know everything about the south, mine (sending them to read the bible) was a figuty speech, maybe they will learn more compation,and followes Jesus example....I'm with you on freedom of religion, but there are some fundamentalists in any different religion, that's why there isn't peace in this world, but this is a more complex subject.....I'm sorry for your loss, I haven'r felt it myself, but like you said, it has to be terrible feeling rejected, I guess, it will take some time for the waterd to calm down...I really lot of luck, and I'm still with you, sometimes we invest in something, sometimes we lose, other time we win...for sure you will recover from this...like a said before, you seem a likeable guy, you'll be fine ojo
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i shouldn't have said anything about religion, that was wrong of me, i only made a passing half joking insult about the bible belt... i was not implying that religion was the root problem
the point i was making in my original post on this thread, is that an aids dx can have an impact in ways other than just a SS claim. i should have limited my post to only speak about the difference between an hiv vs aids dx.
my post in this thread, has nothing to do with my posts in other threads about the ripple effect of disclosure.
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Folks pile on about "religion" all the time. Some believe and some don't. That's fine. My faith is part of my overall make-up. It's part of my DNA. Everyone is entitled to their own beliefs. For perspective, I am a Christian - gay - meat and potatoes gay man who is happily partnered but still enjoys a bath house romp. This is proof that 'my' God does not make mistakes and He truly loves everyone.
My problem with religion is when people use it to better themselves at everyone else's expense.
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Folks pile on about "religion" all the time. Some believe and some don't. That's fine. My faith is part of my overall make-up. It's part of my DNA. Everyone is entitled to their own beliefs. [/quotojo
i'm with you drewn on this, but no in the bath house lol
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as far as what difference the distinction can make... in my state, my clinic only treats patients with aids dx. they will absolutely without apology wait until you're near death before they even speak to you, much less bother taking your blood pressure
but i live in a red state below the bible belt, no secret they just want us to die, and be quick about it
If you are diagnosed with having AIDS by whatever measure and you don't work, you are required to apply for SSDI or SSI here, before getting ADAP. You don't have to actively pursue it after that, but you have to apply. Unless they've changed that, that is how it was in 2009. I had to apply, because I had an AIDS dx (temporary crash due to being so sick, but it rebounded) and I wasn't working at the time. Unless my ADAP coordinator didn't know what he was talking about, then that's how an AIDS dx made a difference. If you were diagnosed with HIV and didn't work, you didn't have to apply for disability. This may have all changed, since things do seem to change a lot with HIV guidelines.
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If you are diagnosed with having AIDS by whatever measure and you don't work, you are required to apply for SSDI or SSI here, before getting ADAP. You don't have to actively pursue it after that, but you have to apply. Unless they've changed that, that is how it was in 2009. I had to apply, because I had an AIDS dx (temporary crash due to being so sick, but it rebounded) and I wasn't working at the time. Unless my ADAP coordinator didn't know what he was talking about, then that's how an AIDS dx made a difference. If you were diagnosed with HIV and didn't work, you didn't have to apply for disability. This may have all changed, since things do seem to change a lot with HIV guidelines.
In a lot of states, if your CD4 count is low with documentation of HIV infection, you automatically qualify for Medicaid and determined "disabled" by the state. There are clinical differences in determining disability to qualify for Medicaid vs Social Security and even what your physician determines. Medicaid and physicians determine disability differently than the Social Security Administration, which is why there are folks who are determined "disabled" by the state and their physician, yet not by the SSA. The SSA determines disability based upon law and has a more stringent determination process.
Every state determines its own criteria for ADAP eligibility, which is why in one state, you can receive ADAP if your income is up to 400% of the Federal Poverty Level, yet in another state it may only be 200% of the Federal Poverty Level. Every states ADAP program determines its own formulary for coverage. Some states carry 200 HIV-related medications and some states only 40. Some states ADAP coverage can range from 100% if you have no income, to co-pay assistance if you are insuranced, up to and including premium and outpatient co-pay assistance. With the implementation of the ACA, if you don't have insurance coverage through your employer, you are required to apply for Medicaid and if denied, apply for and maintain an ACA policy. That being said, most states Ryan White Care Part B/ADAP programs pay the insurance premiums, medication co-pay and outpatient co-pays or at least assist for all insurance, up to and including private insurance and Medicare. They won't pay Medicare Part B premiums, but you do receive assistance with medication copays through Part D.
You don't have to have an AIDS diagnosis to receive ADAP assistance, but you do have to have laboratory-confirmed HIV infection by Western Blot or HIV Quantitative and CD4 count. Then your income is taken into consideration and insurance status. The message being that there is assistance available to help in getting primary care and medications for those who have HIV/AIDS and if anyone out there is reading this and not linked into care, there is help available in every state in the US. Google "AIDS Service Organizations" and make an appointment with an intake coordinator in your locality.
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thanks leatherman and I think a couple of others for answering my question.
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i shouldn't have said anything about religion, that was wrong of me
don't diss your dissing of religion. ;)
Religion has stigmatized gay people for many years leading people, not only to suicide, but to risky behavior which helped propel the HIV epidemic once it gained a foothold in that subculture. Religion also has even more literal blood on its hands by leading people astray concerning treatment.
Of course, I understand that religions are changing, becoming more tolerant, and becoming more proactive about HIV education and treatment. However, living here in fundamental-Baptist Tea-Party-land South Carolina, few religious people here have changed their bigoted stigmatizing opinions. Religious people, and their churches, regularly disown their gay children, push people into suicide, speak derogatorily about gays and positive people, spread falsehoods about supposed HIV stereotypes, and lie about treatment all the while doing nothing to bring about real sex ed, HIV education or prevention. In fact, they often hinder bringing about real progress in education that could help alleviate the still rising epidemic in the Southern states.
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thanks leatherman and I think a couple of others for answering my question.
interesting, isn't it? while I'm still not certain exactly what the OP was trying to find out, this thread really is filled with a lot of info ;)
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don't diss your dissing of religion. ;)
Religion has stigmatized gay people for many years
ojo well said, leatherman, in both of your last messages...pretty interesting, I've learned and get to know what some members think about the topics ojo
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If you are talking about why it mattered to me. The reasons were personal. I have accepted the fact the I'm hiv pos but never thought of myself as having "AIDS". Maybe I haven't accepted my status as well as I thought. I will continue to learn and grow with this disease as best I can.
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not gonna bother with quoting, but i'm responding to teds message
i've gone through similar. like i said, my clinic only serves patients that have had an AIDS dx. but it doesn't just stop there, you're required to apply for every government benefit for which you may be entitled to. its not a buffet, take only what you need, they force you to go all in, or stand out in the cold. i had to be near death and indigent before they'd look my way. at my sickest i felt like a performing monkey jumping through flaming hoops of death.
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Zach Understand you were responding to ted but fortunately I have insurance, so dx makes little difference. Its tough making the deductible but I'm getting by.
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hey man, we're all in this together, just different paths
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Very interesting thread with a lot of good comments and opinions. The one thing I will never understand is why some folks get so worked up about an AIDS diagnosis. I've had AIDS for three decades and I simply do not care. I don't care, because I am not defined by the virus I carry and for any people, who might look down on my because of an AIDS diagnosis, I don't care about them either.
My view has always been that your labs, etc., are but one indicator of your health and I worked through some of my sickest years, including while taking AZT, so having AIDS meant nothing to me. It did not alter who I am, it did not change how I view myself and I have learned to never care what others think of me, unless they know me well, or I respect their opinion.
I believe too many people give away their own power, by letting the opinions of others influence them. Of course we want to be liked, but sometimes the price is simply too high and many times, the people who look down on you because you have AIDS, do not warrant the respect of you caring what they think.
For me, it always comes back to: Recognizing those things you cannot change, so you avoid wasted effort and recognizing those things you can change, so you know where to direct your energies and hopefully, the wisdom to know the difference.
Joe
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You are right, your numbers (immune system) wasn't damage as like mine, but I survived "ful-blown-ais_, or aids, is just a terminology, but is still a dead sentence for those who don't test tnemself, or don't stick to the treatment...
This comment really bothered me, because there are many pozzies, who do everything right... they take care of themselves, they get medical care, they are adherent to their meds... yet they still die. I urge everyone to be very careful about assuming what happens to other pozzies. From the beginning, there have always been pozzies, who no matter what they did, no matter how hard they fought, they still lost the battle. Please be sensitive to these folks, because nothing hurts them more, than to be told that they just are not trying, when they are. It's not the people who are failing, it's the medication failing the patient.
Joe
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This comment really bothered me, because there are many pozzies, who do everything right... they take care of themselves, they get medical care, they are adherent to their meds...
ojo...Hi Joe...I never meant to offend anyone, it maight be my poor English, I just lost a 30 years old friend who did everething right, never missed a dose and still he died last march, still hurts me to know of his death, what I'm trying to say is that even though we have good numbers, we have to watch out for any changes in our bodies, specially we LTS,...I had cd4 of 500 and I got anemia that almost killed me....I know that there are a lot of people who take their meds and the meds failed them, it happens to me Joe, I'm still alive, but legally blind, no able to work, I will never try to offend anybody because I'm on the same boat....So I'm sorry Joe you got it that way....I want to think, that is a case of misunderstanding ojo
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ojo...Hi Joe...I never meant to offend anyone, it maight be my poor English, I just lost a 30 years old friend who did everething right, never missed a dose and still he died last march, still hurts me to know of his death, what I'm trying to say is that even though we have good numbers, we have to watch out for any changes in our bodies, specially we LTS,...I had cd4 of 500 and I got anemia that almost killed me....I know that there are a lot of people who take their meds and the meds failed them, it happens to me Joe, I'm still alive, but legally blind, no able to work, I will never try to offend anybody because I'm on the same boat....So I'm sorry Joe you got it that way....I want to think, that is a case of misunderstanding ojo
Hello Pochas,
I should have included that I do not think you meant that statement in any negative fashion. I just wanted to comment on how many people do think that some of us simply don't try hard enough and the proof is that we die. I'm sorry for any confusion as that was never my intent. Misunderstanding indeed.
Joe
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ojo Hi Joe, misunderstandind indeed.....I've been trying to support a lot of members on the "vivir con vih" for awhile, the griend I talke on this thread that died in March, I met him here, we became friends, and still hurts his death because he looked for my support and I feel like if we both the battle against aids, I know I couldn't do more than what his doctor could do, but still it hurts, and it is my fault feeling hurt, because I promised myself no to get that involved with somebody with hiv, because I'm very sensible when it come to what happens to my friends, but, I promised him, that I will keep sharing my experiencies with whoever wants to do it...this is for you "tonny" 11/15/1980-03/06/2014 o,jo,
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If you are talking about why it mattered to me. The reasons were personal.
nope. :D I was talking about mozartian
Thanks for the catch Leatherman ... I merged this thread for context . It does seem like a discussion on semantics to the OP . Mystery solved .
Can someone tell me what the current medical definitions are for AIDS and HIV Positive?
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There are also many who did everything wrong and still became LTS. ;)
I'd still love to know what the OP was hoping to garner. Classification and being tormented by those terms is yet another way to be marginalized. I don't fit squarely into any of those squares that needed checked. Simply put, those terms are used as a way for "others" to see me and not how I define or see myself. I'm way more than my virus or my illnesses. (or my constant injuries)....lol
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leatherman sorry : ( my mistake the thread has grown since I ask my question.
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I was diagonized in 2002 and my CD 4 s at the time was seven! Yes 7!
Think i must have had what you call full blown AIDS..I was down with TB, HERBS simplex,boils, weigth loss everyone was stunned ! I knew i was going.. But since then here i am going strong; CD 4 s operate around 300 and apart from the usual flus which come with the weather i have no much complains. You are an old timer and that gives some us the encouragement that we so desire; that life must go on and that you can plan your life as if you arent infected. Thanks and welcome!
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Thank you. I believe you are the first person now that has responded and that had AIDS when they tested positive. You did not say though when you had the last negative test. I tested negative six months prior to testing positive with a 32 Tcell count.
I have not been responding here because a gang was forming immediately around me that was going to lynch me because of my incorrect terminology. But upon listening to all of them I found that the terminology was so different from person to person and in effect they were telling me that this is your personal terminology and then there is the legal terminology and then there is the medical terminology and they all differ and what I was hearing was that you should make your personal terminology whatever you choose that will help you have a positive attitude and to make the most out of your life.
There is no mailing list for gay people that everyone gets on when they come out and there is no mailing list for people who have tested positive that keeps them abreast of current terminology and changes that have taken place. This type of thing is never in the news and I would even go so far as to say that terminology is never even talked about in gay publications. How do we even find out about this kind of thing? Even the doctors do not seem to know. No wonder that we all go around calling the same thing by different names. It is a wonder some times that gay people know much at all about what is happening in the gay community. This forum here is one of the few places in which you can discuss things like this.
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edited my entire post away
i want nothing to do with this kind of labeling
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Thank you. I believe you are the first person now that has responded and that had AIDS when they tested positive. You did not say though when you had the last negative test. I tested negative six months prior to testing positive with a 32 Tcell count.
I have not been responding here because a gang was forming immediately around me that was going to lynch me because of my incorrect terminology. But upon listening to all of them I found that the terminology was so different from person to person and in effect they were telling me that this is your personal terminology and then there is the legal terminology and then there is the medical terminology and they all differ and what I was hearing was that you should make your personal terminology whatever you choose that will help you have a positive attitude and to make the most out of your life.
There is no mailing list for gay people that everyone gets on when they come out and there is no mailing list for people who have tested positive that keeps them abreast of current terminology and changes that have taken place. This type of thing is never in the news and I would even go so far as to say that terminology is never even talked about in gay publications. How do we even find out about this kind of thing? Even the doctors do not seem to know. No wonder that we all go around calling the same thing by different names. It is a wonder some times that gay people know much at all about what is happening in the gay community. This forum here is one of the few places in which you can discuss things like this.
Please do not think anyone had even a inkling of bad intentions when we responded to you . You started the topic and we discussed it, isn't that what you wanted ? :) . I do wish you had answered our questions in return for us responding to yours .
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The gay publications in French talk about HIV and AIDS and HIV prevention all the time.
Also there are publications for HIV+ people that are for all genders and orientations, because HIV is not a virus just for gays.
Mozartian - the virus has been around a few decades now - of course terminology changes.
The world changes all the time. Culturally, in the bast 10 or 20 years, one of the features of culture is questioning labels and definitions... If you are looking for everything in life to be labeled and everyone to agree upon the labelling, you'll be disappointed, these days...
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I believe that the question asked most frequently was "What's it to ya?" "Why is this so important for you to know?"
This is a forum for discussing information. I want correct information. I have already learned that there is no "full blown" or "half blown" AIDS. It is just simply AIDS. You cannot communicate very well with people when you have different definitions for the same words. My doctor asks me to speak at seminars and fund raisers now and then when he gets letters asking if there is a patient of his that is a long term survivor. I have spoken twice and just talked for maybe ten minutes about positive attitude and denying the disease control over my body. I talk about visualization and mind over matter. I have no problem there. But the first thing that I say is how, when and what do I have that makes me qualified to speak.
I would like to say that in as short a fashion as possible. I do not want to get into explaining the disease from beginning to end but I want them to know at what stage I am.
OK, here are my first two sentences. "When I tested positive for the AIDS virus in 1992 I had a Tcell count of 32. Not only did I have the virus, but I was immediately diagnosed with AIDS."
Take it apart and tell me how to say this. I used to say "I was diagnosed with full blown AIDS", but I now know that was incorrect and so I have changed that. I believe that I am incorrectly calling the virus "the AIDS virus". I used to say "the virus that causes AIDS", but I am quite sure that is incorrect as well. I would like to say this in as brief a manner as possible without having to add another sentence to explain the difference between HIV and AIDS.
I might add that there have been doctors, researchers and people with AIDS attending and not once have any of them come up to me and corrected by wording. They may know it is incorrect, but I suspect that terminology is not the point of what I say. Just that they know I have AIDS.
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Its important to know so that people can answer and discuss the topic in the proper context and give pertinent responsive replys . I am living with HIV and thats what best defines the state of my health . Thank you for telling us why its important to you .
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Yes, it's HIV. If you say "the HIV virus" or "the virus HIV" - everyone will understand as well, even though the virus is already in H.I.V. ;D
Yes the "AIDS VIRUS" - people will understand but its not correct.
The "virus that causes AIDS" - well that is only sometimes correct. Yes it can/might cause AIDS. Anyway, people will understand.
If you want to be true to science, you could say, "I was diagnosed HIV+" or "I was diagnosed with HIV....." And "I got the AIDS diagnosis at the same time."
And you could explain to the audience what an AIDS diagnosis meant then, and now, generally, and to you personally. I'm sure this would be interesting and informative for everyone and you would be making a generous and personal contribution to public knowledge. Thanks!
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In 1992 the doctors told me that I had three years to live. Now that may have been a bad thing for them to say and I am sure doctors do not even venture to give you a guess now. But that is what they said to me. And the reason I want the audience to know at what stage I was at, is so they realize that I was looking at death, that I was to the abyss and looked at death at 42 years of age. I do not have any secrets to staying alive but being that was the information I was told, it may be okay then to see what has kept me going all these years past the three year mark. I could simply say "I have been living with AIDS for 22 years now." And skip the Tcell count and the word "virus" altogether. I have gone from stage 4 to stage 2 or something like that, but I am at least being truthful that I have had AIDS all these years.
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You have the right to relate your own experience! If you are worried about not representing everyone else's - don't worry - and you can tell your audience, "my experience is mine, and what happens when people get HIV today might be quite different."
Doctors certainly gave grim prognosis back in the 80s and 90's before meds. Some people got a "couple months" so your "3 years" wasn't the grimmest.
Doctors DO still give a prognosis. If you are interested. When I got infected, and diagnosed 6 years ago, my specialist said, and I quote, translated from French of course, "Normal life. Vie normale.... Normal life. (he repeated it a few times.) Go about your life normally. You won't get sick and you should expect a normal life span." Thats a quote man.
Sure you have had AIDS all these years thats what people explained in this thread, once you got that diagnosis once, you can keep it and do with it as you please.
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I have not been responding here because a gang was forming immediately around me that was going to lynch me because of my incorrect terminology.
Say what???? I think everyone was quite respectful considering we couldn't get you to "spell out" your concerns. One of your latest posts could have eliminated all that confusion.
Even though a lot of terms are technically incorrect, many of them had practical uses. Full blown AIDS was practical in the early days because it was a way of discussing someone's imminent death without actually uttering those words. We knew that phrase meant someone was so wracked with OI's that they probably wouldn't make it. I believe it was easier for us to utter that instead of saying such and such is on their death bed.
I'm not even a baby boomer and I entered the world of the infected at quite a young age and was told I could possibly live to be 30 if everything went well. I wasn't for fortunate. By the age of 26, I had "full blown AIDS" and wasn't expected to even leave the hospital.
Perhaps I'm in a different "box" as I have OK numbers without OI's so I guess I could simply say I'm positive. But that doesn't address the residual issues I deal with because of my "previous" AIDS diagnosis. Cognitive disorders, osteoporosis...etc.
I've witnessed threads where gang mentality existed and this sir was not the case here.
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I was dxd in May of 2010 with "full blown AIDS." My CD 4 count was -eight- and my VL was a half million. I had PCP pneumonia and Karposi's lesions. Technically, I was not expected to live 5 years. Next year will, obviously, be my 5 year aids-a-versary and there may very well be a HUGE gaylabration. Everyone's experiences are different. Through the human experience, we all see things differently. I hated having an AIDS diagnoses. I still do with a noted exception. The dx comes in handy sometimes when getting assistance to keep fighting the virus. I have learned to accept it and run with when needed.
I also happen to agree with wolfter in that I think everyone was quite respectful as well. Also, even with my AIDS diagnoses, a doctor from MD Anderson who was treating AIDS in NYC in the 80's told me "you will be OK. We can reverse these numbers and you will be OK."
I had a choice to either see the cup as half empty and live out my five years or believe the doc from MD Anderson. I am glad I chose the second!
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ojo I'm glad wolfter and drewn talked about being dx with full-blown- aids, even in 2010 doctors still referred as ful-blown-aids...when I was dx, full-blown-aids, pcp...my doc said I will live for two more years this was in 1995, I'm still here, unless my spirit is the one writing this, lol...I think that people who, thank god, hasn't gotten low cd4 numbers, they don't recognized that the term ecists, yet...thx guys and good luck to everybody with aids or hiv, still, we have to keep fighting to survive, excuse my bad English and my blindness ojo
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I will give you the rest of my speech. It is written for people who are infected. Not really for doctors or others. If there is only one person there infected I want to speak to him. After I give them my condition in the first paragraph, I go on here......
There was a nurse in the clinic who came in and talked to me after I was given the initial dose of AZT. She said “You must think of these pills defeating the virus. You must visualize them knocking down and killing the virus. There is a war going on in your body and both sides want control. You must see the soldiers you are sending in taking over the virus at every turn. You must not for even a minute allow the virus to take control. This is a mind over body matter and attitude is the operative word. You must have a positive attitude at all times. You must put yourself around positive people and influences and you must guard your visualization from anything that distracts you from the job at hand. Do not let anyone discourage you or bring negativity into your life. Do not hang around negative people. Do not allow yourself even one negative thought. Positive will defeat the negative. Keep your life in the right sphere of influence and you will win the battle. You are living with AIDS. You are not dying FROM IT.”
And I remember the instant that a veil was lifted from my eyes and I realized that this was living your life. This was what life was all about. This was a lesson not just in defeating a virus, but in the total way that I look at life. And that started what for me has been the pattern of thinking that has kept me going. I was not going to allow the virus to have control of my body. I was going to deny the virus a home and order it out for good.
I have visited websites now for long term survivors and have read their stories. I read about a man who has now lived for 30 years with the virus. And one of the things that these survivors talked about was exactly the same thing that I had discovered. And that was denial. I simply deny the disease in every respect. Even to deny that you have it. Why not go the limit and deny the disease right out of your life? The disease does not know any better. What have I got to lose? Deny the disease a home and tell it to go away. Believe God for a miracle. Tell the virus it is not welcome any more and to go away for good.
I have lived now for 22 years with the virus – one third of my life I have been living with the virus. At my last physical examination, my doctor said I was healthier now than I have ever been in the last 22 years.
Believe that what you think, you are. Believe that what you think, will come to you. And pretty soon, what you have believed, does come back to you. And life does truly give back what you put into it. This is my experience, and I believe it can be the same for you. Thank you.
OK, I am putting it out there now. I am not a writer and I am sure it can be improved . I will take you suggestions.
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I will give you the rest of my speech. It is written for people who are infected. Not really for doctors or others. If there is only one person there infected I want to speak to him. After I give them my condition in the first paragraph, I go on here...
ojo...I just want to let you know that I'm happy for your 22 years living with hiv/aids....I will celebrate my 20th anniversary with hiv/aids next Novemebe....good luck, and I will see you here in the next 22 years....que no!!! ojo.
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I have thought from the very beginning of this disease and I think more so even now after getting all these definitions and opinions, that it would all be simpler and clearer if the disease was simply called "AIDS". Get rid of the HIV confusion that makes people think you DON'T have it even when you in fact DO. As I see it, you either have the virus or you don't. If you have it, you have AIDS. If you don't have the virus, you don't have AIDS. You either have the virus or you don't. What is the purpose in having all this gray area in between? It especially confuses the public.
Hi Mozartian, you are confusing the virus (HIV) with the syndrome that results from a weakened immune system (AIDS). With HIV you either have it or you don't. AIDS is different. AIDS itself is not an infection but a cluster of conditions that result from a weakened immune system. The HIV virus can lead to AIDS when HIV sufficiently destroys a person's immune system. Many people with the HIV virus have sufficient immunity that they don't get the conditions that result from a weakened immune system, i.e. AIDS. AIDS is the cluster of symptoms (i.e. cancers, opportunistic infections, etc) that RESULT from a weakened immune system. HIV is the virus that eventually CAUSES a weakened immune system. Plenty of people have HIV and don't have AIDS, and these days may never develop AIDS. In summary HIV is a virus/infection (the CAUSE of weakened immunity). AIDS is a set of symptoms (i.e. an EFFECT - what happens to you when you don't have an adequate immune system).
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Hi Hans,
Welcome to the forum.
This is an old thread from 2014.
Perhaps you can introduce yourself by opening a new topic.
Are you living with HIV and how are you getting on, what treatment are you currently taking?
Kind regards
Jim