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Author Topic: HIV disease VS. AIDS  (Read 19679 times)

0 Members and 1 Guest are viewing this topic.

Offline JamieD

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HIV disease VS. AIDS
« on: August 19, 2007, 03:34:04 pm »
I was wondering if there was anyone else who had a preference for either term. If you read medical or scientific literature you will have seen that they have in recent years been moving away from the term "AIDS" to the term "HIV Disease".
I personally think I would rather be told that I have "Advanced HIV Disease" then "AIDS". Living with HIV is not the same today as it used to be. Back then the term "AIDS" meant that you were really hopeless. Today being told that you have a very low CD4 cell count is not such a big deal because in a few months or years you can have your CD4 cells back to normal levels.

Offline thunter34

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Re: HIV disease VS. AIDS
« Reply #1 on: August 19, 2007, 03:40:09 pm »
Today being told that you have a very low CD4 cell count is not such a big deal because in a few months or years you can have your CD4 cells back to normal levels.


http://www.youtube.com/watch?v=-IERzx5Spic


I think there might be something to be said for keeping the term AIDS around.
« Last Edit: August 19, 2007, 03:41:45 pm by thunter34 »
AIDS isn't for sissies.

Offline JamieD

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Re: HIV disease VS. AIDS
« Reply #2 on: August 19, 2007, 03:41:27 pm »
I can't watch videos. What's that about?

Offline thunter34

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  • His name is Carl.
Re: HIV disease VS. AIDS
« Reply #3 on: August 19, 2007, 03:43:08 pm »
I can't watch videos. What's that about?


Don't worry- be happy.


I'm not usually one to post such things in Living With, but I felt compelled.  Are you familiar with our forum member, Christine? 
AIDS isn't for sissies.

Offline JamieD

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Re: HIV disease VS. AIDS
« Reply #4 on: August 19, 2007, 03:57:21 pm »
Is that Queen Akasha?

Offline DanielMark

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Re: HIV disease VS. AIDS
« Reply #5 on: August 19, 2007, 04:18:05 pm »
I have no problem with the term AIDS. It’s an accurate acronym.

I was clinically diagnosed as having AIDS a few years ago but now my numbers have rebounded so I no longer believe that applies to me, regardless of what doctors or clinics might say.

I am not defined by phrases or words, nor do I fear them.

Daniel
MEDS: REYATAZ & KIVEXA (SINCE AUG 2008)

MAY 2000 LAB RESULTS: CD4 678
VL STILL UNDETECTABLE

DIAGNOSED IN 1988

Offline atlantabro

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Re: HIV disease VS. AIDS
« Reply #6 on: August 19, 2007, 04:39:17 pm »
What bothers me quite a bit is that most people (primarily HIV- folks) don't know the difference between HIV and AIDS. Most assume that it's the same thing.

Offline JamieD

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Re: HIV disease VS. AIDS
« Reply #7 on: August 19, 2007, 06:03:31 pm »
What bothers me quite a bit is that most people (primarily HIV- folks) don't know the difference between HIV and AIDS. Most assume that it's the same thing.

You're right, the terms are used interchangeably and they're not. Also, even people who have some idea what "AIDS" is really have no idea what it is.

Offline AustinWesley

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Re: HIV disease VS. AIDS
« Reply #8 on: August 19, 2007, 06:08:22 pm »
I can see Atlanta's point.  A lot of people don't know the difference between HIV & AIDS, but AIDS has such a dreadful and negative connotation that I'd welcome "HIV disease" or something less gloomy.

Since my CD4's dropped below 200 on 1 prior occasion I'll always be labeled as someone living with AIDS which seems absurd to me since I've NEVER been sick and certainly no where close to deaths door.

I think the term AIDS is archaic and outdated, not to mention the added stigma it brings.

Lot of people have NO idea they are also technically living with AIDS simply because their CD4's never dipped below 200; however, they may have had a number of opportunistic infections and been quite ill.  

Really it's just a label to me and serves no scientific or beneficial purpose.   It also seems asinine to me that once one has had an AIDS diagnosis they are forever plagued with this Scarlet letter for life even if they may have CD4's above 1000 and other than having the virus are healthy.

Well, that's my 2 cents since I've been a person who has been assigned all of these labels!

Wesley
Diag. 3/06  Infected aprx. 2 mo. Prior
Date        CD4   %      VL
4/6/06     627    32    36,500     NO MEDS YET!
6/7/06     409    27    36,100
8/23/06   408    25     22,300
1/2/07     354    23     28,700
2/9/07     139    30     23,000  Hep A Vaccine same day???
2/21/07   274    26     18,500 
3/3/07    RX of Truvada/Sustiva Started.
4/5/07    321     27      Undectable 1st mo.  
5/16/07  383     28    Undectable 2nd mo.
8/10/07  422     32   UD <48 on new scale!

Offline thunter34

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Re: HIV disease VS. AIDS
« Reply #9 on: August 19, 2007, 06:11:51 pm »
Also, even people who have some idea what "AIDS" is really have no idea what it is.

True.  And judging from your initial post in this thread, I'd venture the same might be said of you.

Read the link below and get schooled:

http://forums.poz.com/index.php?topic=14051.0


You see...while it might be true in this day and age that you won't die directly from AIDS, it is also still true that- despite your best efforts at adherence and doing the right things, any one of us could at any time find ourselves with a mutation that is resistant to some, many...hell, maybe all regimens.  And all of this assumes that we are in the position to get the meds we need to live in the first place.  Another forums member comes to mind:  tnboy.  

Look it up.

And even if you get the meds and they work for you, with a side effect list ranging from cardio problems to diabetes to kidney failure to dementia to lipo to....(hopefully you are starting to get the picture), not to mention the poverty and stigma that still so often accompanies this disease, it's still rather early in the war to chalk an AIDS diagnosis up as no big deal.

The chances of an AIDS diagnosis ever remaining as "no big deal" in your life are still slim to none.
AIDS isn't for sissies.

Offline thunter34

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Re: HIV disease VS. AIDS
« Reply #10 on: August 19, 2007, 06:52:33 pm »
I can see Atlanta's point.  A lot of people don't know the difference between HIV & AIDS, but AIDS has such a dreadful and negative connotation that I'd welcome "HIV disease" or something less gloomy.

Since my CD4's dropped below 200 on 1 prior occasion I'll always be labeled as someone living with AIDS which seems absurd to me since I've NEVER been sick and certainly no where close to deaths door.

I think the term AIDS is archaic and outdated, not to mention the added stigma it brings.

Lot of people have NO idea they are also technically living with AIDS simply because their CD4's never dipped below 200; however, they may have had a number of opportunistic infections and been quite ill.  

Really it's just a label to me and serves no scientific or beneficial purpose.   It also seems asinine to me that once one has had an AIDS diagnosis they are forever plagued with this Scarlet letter for life even if they may have CD4's above 1000 and other than having the virus are healthy.

Well, that's my 2 cents since I've been a person who has been assigned all of these labels!

Wesley


The awful truth is a bitch, ain't it?  And having to wear an AIDS label in this day and age- when HIV disease is so much more fashionable- it just seems so....last season.


I see "AIDS" as having purpose(s).  Scientifically, it still describes a syndrome...the bottom end of the sliding physical scale that comes with HIV infection.  And it does so in a way that "HIV Disease" cannot.  At least not for me.  To that end, it has a beneficial purpose for me:  it keeps me in somewhat of a reality check.  I'm still hopeful, but grounded.
AIDS isn't for sissies.

Offline LatinAlexander

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Re: HIV disease VS. AIDS
« Reply #11 on: August 19, 2007, 08:08:53 pm »
I have to agree with Thunter34. Put it anyway: AIDS, HIV+, Hihg Fiver, Inmundodeficiency, whatever. Reality is this: We have a non-curable disease, associated to fags and junkies. Period. Everyday we have , we do not know if one virion is mutating into our final killer, and no money, nothing can do anything.

AIDS is here. Many people STILL dies from AIDS. Very probably, many of us will.

Alex (Who hates reality, but cannot deny it)
Poz since Jul 19 2006
Initial numbers : CD4-250 VL 3500
First labs after HAART (Dec 04-2006) : CD4-432 VL-<40 (Undetectable)  cd4%=25.11%
Started HAART: Combivir+Efavirenz Aug 26 7:38 pm
Feb 08 2007 - Gradually stopping HAART cause of Myalgia. Protecting Efavirenz. Stopped Efavirenz, ahead with Combivir....
February 17 Combivir stopped.
April 3 -07 : Started ddi+3tc+efavirenz...
Gay and positive (What a lack of Identity...:) )
Looking for my Ben....

Offline RapidRod

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Re: HIV disease VS. AIDS
« Reply #12 on: August 19, 2007, 08:18:13 pm »
JamieD, if you don't like the term AIDS, then use the term Advanced HIV Disease. It all has the same meaning. It doesn't really matter to me what term anyone uses. I know what I have and there is no name that will change that fact.

Offline AustinWesley

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Re: HIV disease VS. AIDS
« Reply #13 on: August 19, 2007, 08:50:22 pm »

The awful truth is a bitch, ain't it?  And having to wear an AIDS label in this day and age- when HIV disease is so much more fashionable- it just seems so....last season.


I see "AIDS" as having purpose(s).  Scientifically, it still describes a syndrome...the bottom end of the sliding physical scale that comes with HIV infection.  And it does so in a way that "HIV Disease" cannot.  At least not for me.  To that end, it has a beneficial purpose for me:  it keeps me in somewhat of a reality check.  I'm still hopeful, but grounded.

Initially when I got that Aids diagnosis it did bother me, but I've moved past that.   I hardly consider myself at the "end of a sliding scale."   

I consider myself grounded, but I would hardly consider myself as someone at death's door or at the end of a scale.   If it makes you better to wear labels then by all means you should.

I'd hardly compare HIV to fashion though!
Diag. 3/06  Infected aprx. 2 mo. Prior
Date        CD4   %      VL
4/6/06     627    32    36,500     NO MEDS YET!
6/7/06     409    27    36,100
8/23/06   408    25     22,300
1/2/07     354    23     28,700
2/9/07     139    30     23,000  Hep A Vaccine same day???
2/21/07   274    26     18,500 
3/3/07    RX of Truvada/Sustiva Started.
4/5/07    321     27      Undectable 1st mo.  
5/16/07  383     28    Undectable 2nd mo.
8/10/07  422     32   UD <48 on new scale!

Offline Queen Tokelove

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Re: HIV disease VS. AIDS
« Reply #14 on: August 19, 2007, 09:00:02 pm »
Is that Queen Akasha?

No, it is not me but a very special lady here in the forums. My name is Michelle....
Started Atripla/Ziagen on 9/13/07.
10/31/07 CD4-265 VL- undetectable
2/6/08 CD4- 401 VL- undetectable
5/7/08 CD4- 705 VL- undetectable
6/4/08 CD4- 775 VL- undetectable
8/6/08 CD4- 805 VL- undetectable
11/13/08 CD4- 774 VL--undetectable
2/4/09  CD4- 484  VL- 18,000 (2 months off meds)
3/3/09---Starting Back on Meds---
4/27/09 CD4- 664 VL-- undetectable
6/17/09 CD4- 438 VL- 439
8/09 CD4- 404 VL- 1,600
01-22-10-- CD4- 525 VL- 59,000
Cherish the simple things life has to offer

Offline Jerry71

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Re: HIV disease VS. AIDS
« Reply #15 on: August 19, 2007, 09:03:23 pm »
Well I guess I will always have the word AIDS put over my head since my numbers have never climbed over 200 in over two years soon too be three. :'(

So with that said why is there not a forum set up for people Living With AIDS? Then there is also the AIDSMEDS.COM

Offline Queen Tokelove

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Re: HIV disease VS. AIDS
« Reply #16 on: August 19, 2007, 09:08:14 pm »
It really does piss me off to no ends to be told by someone ignorant, my sister in this case, who works in the medical field, that I am an AIDS infested bitch. I'm sure she knows the difference in the term but uses it to try to make me look bad. I guess what matters is that I know the difference.

My doctor however does not use the term AIDS with me, he either uses hiv or something compromised, I can't think of the correct term for the latter.
Started Atripla/Ziagen on 9/13/07.
10/31/07 CD4-265 VL- undetectable
2/6/08 CD4- 401 VL- undetectable
5/7/08 CD4- 705 VL- undetectable
6/4/08 CD4- 775 VL- undetectable
8/6/08 CD4- 805 VL- undetectable
11/13/08 CD4- 774 VL--undetectable
2/4/09  CD4- 484  VL- 18,000 (2 months off meds)
3/3/09---Starting Back on Meds---
4/27/09 CD4- 664 VL-- undetectable
6/17/09 CD4- 438 VL- 439
8/09 CD4- 404 VL- 1,600
01-22-10-- CD4- 525 VL- 59,000
Cherish the simple things life has to offer

Offline AustinWesley

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    • HIV Discussion Group on Myspace!
Re: HIV disease VS. AIDS
« Reply #17 on: August 19, 2007, 09:11:11 pm »
Well I guess I will always have the word AIDS put over my head since my numbers have never climbed over 200 in over two years soon too be three. :'(

So with that said why is there not a forum set up for people Living With AIDS? Then there is also the AIDSMEDS.COM

Well, Jerry I guess you and are at the end of the scale and not worthy of expressing ourselves ; )

Also, great point Queen!   That'd piss me off too and I think your point is a valid one.

Wesley
Diag. 3/06  Infected aprx. 2 mo. Prior
Date        CD4   %      VL
4/6/06     627    32    36,500     NO MEDS YET!
6/7/06     409    27    36,100
8/23/06   408    25     22,300
1/2/07     354    23     28,700
2/9/07     139    30     23,000  Hep A Vaccine same day???
2/21/07   274    26     18,500 
3/3/07    RX of Truvada/Sustiva Started.
4/5/07    321     27      Undectable 1st mo.  
5/16/07  383     28    Undectable 2nd mo.
8/10/07  422     32   UD <48 on new scale!

Offline Jerry71

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Re: HIV disease VS. AIDS
« Reply #18 on: August 19, 2007, 09:13:26 pm »
I say we just get rid of the word AIDS and HIV and just be called POSITIVE.
« Last Edit: August 20, 2007, 11:57:03 pm by Jerry71 »

Offline AustinWesley

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Re: HIV disease VS. AIDS
« Reply #19 on: August 19, 2007, 09:21:08 pm »

So with that said why is there not a forum set up for people Living With AIDS?

I think this is an Excellent point Jerry!   
Diag. 3/06  Infected aprx. 2 mo. Prior
Date        CD4   %      VL
4/6/06     627    32    36,500     NO MEDS YET!
6/7/06     409    27    36,100
8/23/06   408    25     22,300
1/2/07     354    23     28,700
2/9/07     139    30     23,000  Hep A Vaccine same day???
2/21/07   274    26     18,500 
3/3/07    RX of Truvada/Sustiva Started.
4/5/07    321     27      Undectable 1st mo.  
5/16/07  383     28    Undectable 2nd mo.
8/10/07  422     32   UD <48 on new scale!

Offline Jerry71

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Re: HIV disease VS. AIDS
« Reply #20 on: August 19, 2007, 09:27:27 pm »
Well if you look at the threads on the forums now there are:
Positive Women
I just tested POZ
Long Term Survivors
Someone I care about has HIV
Living with HIV

I mean come on if your Tcells are below 200 and have been for sometime you have AIDS.
« Last Edit: August 20, 2007, 11:52:57 pm by Jerry71 »

Offline thunter34

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Re: HIV disease VS. AIDS
« Reply #21 on: August 19, 2007, 09:29:44 pm »
Well, Jerry I guess you and are at the end of the scale and not worthy of expressing ourselves ; )

Wesley


How very subtle of you.  

Quote
I hardly consider myself at the "end of a sliding scale."

And yet, alas, that is exactly the point to which you will return in the event that the meds stop working or you are unable to take them for whatever reason.  Same as me.  Same as many or most of us on this site.

Quote
If it makes you better to wear labels then by all means you should.

If it makes you feel better to attempt passive-aggressive assaults with me, you should reconsider.
AIDS isn't for sissies.

Offline AustinWesley

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Re: HIV disease VS. AIDS
« Reply #22 on: August 19, 2007, 09:36:28 pm »
Well if you look at the threads on the forums now there are:
Positive Women
I just tested POZ
Long Term Survivors
Someone I care about has HIV
Living with HIV

I mean come on if your Tcells are below 200 and have been for sometime you have AIDS. It just pisses me off when I log on and the only thing that I can really relate to is the Living with HIV room and the Off Topic room and the Gatherings  section and see a thread like this posted in the Living with section.

Hey Jerry,

You know I understand your feelings!

What amazes me is the ONLY discrimination I've ever faced has come from other HIV+ gay men, mostly on this site!

Anyways, if we in this group can't even be supportive of each other then I don't know why any of us should expect the outside world to be excepting!

But, I think of you as in the same boat as me.

Wesley
Diag. 3/06  Infected aprx. 2 mo. Prior
Date        CD4   %      VL
4/6/06     627    32    36,500     NO MEDS YET!
6/7/06     409    27    36,100
8/23/06   408    25     22,300
1/2/07     354    23     28,700
2/9/07     139    30     23,000  Hep A Vaccine same day???
2/21/07   274    26     18,500 
3/3/07    RX of Truvada/Sustiva Started.
4/5/07    321     27      Undectable 1st mo.  
5/16/07  383     28    Undectable 2nd mo.
8/10/07  422     32   UD <48 on new scale!

Offline Jerry71

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Re: HIV disease VS. AIDS
« Reply #23 on: August 19, 2007, 09:40:59 pm »
 :o






Edited to watch my ass.
« Last Edit: August 20, 2007, 11:55:11 pm by Jerry71 »

Offline Dachshund

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Re: HIV disease VS. AIDS
« Reply #24 on: August 19, 2007, 10:22:12 pm »
Initially when I got that Aids diagnosis it did bother me, but I've moved past that.   I hardly consider myself at the "end of a sliding scale."   

I consider myself grounded, but I would hardly consider myself as someone at death's door or at the end of a scale.   If it makes you better to wear labels then by all means you should.

I'd hardly compare HIV to fashion though!

You know you really have a lot of nerve. This is coming from the guy who never misses the opportunity to label long term survivors with  passive aggresive put downs. The guy who raked the entire forums over the coals labeling it AidsMess and putting down anyone and everyone that didn't agree with you. I would be happy to supply you with the links if you need a reminder. Call it what you will, we all have the same disease, you can cute it up any way you like.

Offline Iggy

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Re: HIV disease VS. AIDS
« Reply #25 on: August 19, 2007, 10:31:26 pm »
I was wondering if there was anyone else who had a preference for either term. If you read medical or scientific literature you will have seen that they have in recent years been moving away from the term "AIDS" to the term "HIV Disease".

Correction - no one has been "moving away" from the term - what you are seeing is a reduction in incidence people of hitting the threshold that is marked as having AIDS.

Quote
I personally think I would rather be told that I have "Advanced HIV Disease" then "AIDS".

Not me - my medical charts are long enough without Politically correct b.s. to take up more space.

Quote
Today being told that you have a very low CD4 cell count is not such a big deal because in a few months or years you can have your CD4 cells back to normal levels.

Please don't talk in absolutes about this - you are incorrect to say the least 


Offline Iggy

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Re: HIV disease VS. AIDS
« Reply #26 on: August 19, 2007, 10:33:41 pm »
Modified to an oops
« Last Edit: August 19, 2007, 10:56:42 pm by Iggy »

Dan J.

  • Guest
Re: HIV disease VS. AIDS
« Reply #27 on: August 19, 2007, 11:13:15 pm »
I have always been under the impression once you have been given a Aids diagnosis even if your #'s improve above 200 you  are still considered as having Aids.

Dan

Offline bryonut

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Re: HIV disease VS. AIDS
« Reply #28 on: August 20, 2007, 12:43:48 am »
uh, you guys, i don't know how to say this but I uh... I have AIDS  :'(

but anyway...

Dan J, I'm under the same impression as you.

One other question to throw into the pot.. why does it have be called "Full Blown AIDS"? I hate that term. Was there a time when I was partially blown? Half blown? (oh man, I just opened the door for some vile comments)

bry


Offline Queen Tokelove

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  • Smokey the Smurf
Re: HIV disease VS. AIDS
« Reply #29 on: August 20, 2007, 12:51:20 am »
uh, you guys, i don't know how to say this but I uh... I have AIDS  :'(

but anyway...

Dan J, I'm under the same impression as you.

One other question to throw into the pot.. why does it have be called "Full Blown AIDS"? I hate that term. Was there a time when I was partially blown? Half blown? (oh man, I just opened the door for some vile comments)

bry



I so hate that term too. And am under the same impression as you and Dan on the 200 thing with the cd4.


(who is too high to be technical right now)
Started Atripla/Ziagen on 9/13/07.
10/31/07 CD4-265 VL- undetectable
2/6/08 CD4- 401 VL- undetectable
5/7/08 CD4- 705 VL- undetectable
6/4/08 CD4- 775 VL- undetectable
8/6/08 CD4- 805 VL- undetectable
11/13/08 CD4- 774 VL--undetectable
2/4/09  CD4- 484  VL- 18,000 (2 months off meds)
3/3/09---Starting Back on Meds---
4/27/09 CD4- 664 VL-- undetectable
6/17/09 CD4- 438 VL- 439
8/09 CD4- 404 VL- 1,600
01-22-10-- CD4- 525 VL- 59,000
Cherish the simple things life has to offer

Offline RobT

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Re: HIV disease VS. AIDS
« Reply #30 on: August 20, 2007, 01:05:59 am »
When I was diagnosed as haing HIV 2 yrs ago, I felt awlful about it. I still feel awlful. A few mnths after when I broke out in a nasty case of shingles, my CD4s dropped to below 200. I am not sure if that was cuz I was carrying so much on my plate, recovering from my shingles, or just this dreaded disease; I was given the label of having AIDS. My HIV specialist claimed that once I am stuck w/ that label, I am stuck w/ it for life. I did not like being stuck w/ a label that wud define me.
I have since recovered and my numbers have stayed the same, but yet again I am stuck w/ this dreaded label. I rarely think about it much, but I wud rather have a label that does not carry as much negative stigma as the AIDS label carries. I wud rather not have a label at all, but that is again wishful thinking.

Rob
Current meds: Atripla
VL: undetectable
CD4: 630

Offline xyahka

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Re: HIV disease VS. AIDS
« Reply #31 on: August 20, 2007, 01:08:35 am »
Both terms are ok for me... anyways they are both scientifical. What i hate is the slang people derivate from them to offend us. In Spanish there is this word "sidoso" (coming from SIDA = AIDS). If i hear someone calling me like that... i will hit him!!.

Juan Carlos (in peace with science and its terms)
13/03/07 1er diagnóstico /Peso: 79kg
19/04/07 CD4: 494 /CViral: ?? /Peso: 80kg
19/07/07 CD4: 659 /CViral: ?? /Peso: 79.5kg
06/03/08 CD4: 573 (después de meses muy deprimido) /CViral: ?? /Peso: 79kg
17/09/08 CD4: ?? /CViral: ?? /Peso: 84Kg
06/02/09 CD4: ?? /CViral: ?? /Peso: 85Kg /HCV: Neg /HBV: Neg.
07/03/09 CD4: ?? /CViral: ?? /Peso: 87Kg / Gym 3días/semana y Natación 2días/semana.
12/05/09 CD4: 470 /Cviral: ?? /Peso: 87Kg.
08/07/09 CD4: ? /CViral: ? /Peso: 77Kg.
09/12/09 CD4: 510 /CViral: ? /Peso: 78kg. No medicinas aún
10/01/10 CD4: ? /CViral: ? /Peso: 76Kg.
15/05/10 CD4: 320 /CViral: ? /Peso: 76Kg.
01/02/11 CD4: 291 /CViral: ? /Peso: 78kg.
05/05/11 CD4: 366 /CViral: ? /Peso: 78kg.
27/07/11 CD4: 255 /CViral: 138000 /Peso: 78kg.

Disfrutando y aceptando una nueva vida...

Offline Poz Brit

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Re: HIV disease VS. AIDS
« Reply #32 on: August 20, 2007, 07:07:28 am »
According to my Doctor, here in the UK the AIDS label is only applied when your numbers have dropped below 200 and you have had an Aids defining disease, with out the disease and under 200 you are still HIV. Personally I don’t tell anyone my status so why should I worry about the label, I am alive, and enjoying life as best I can.

Offline BT65

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Re: HIV disease VS. AIDS
« Reply #33 on: August 20, 2007, 08:01:18 am »
I was diagnosed with AIDS in 1994.  I'm not sure if my doctor still uses that term for me anymore, since I'm obviously in better health than I was then.  I think the term AIDS has a great significance for me so I can know where I stand.  It has a lot of things that go with it, meanings, different things I should be doing etc.  I don't know why it would bother someone to be diagnosed with this, unless they are in denial. 
Peace-
Betty (who's probably not making a lot of sense right now, because it's very early in the morning and I've not finished my coffee).
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Offline AustinWesley

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Re: HIV disease VS. AIDS
« Reply #34 on: August 20, 2007, 08:35:06 am »
Hey Betty,

I haven't had my coffee yet either, but I'm glad that you're doing well now.   13 years ago you had an Aids diagnosis, but are doing well now so that's the important thing.

If that diagnosis or label is beneficial for you then I would say by all means use it in whatever positive way you can.

Dan mentioned the 200 mark.  Yep, if your CD4's drop below that ever you're now living with AIDS forever more.   I'm uncertain, but I've heard some claim that if your CD4 % drops below a certain percentage you also fall into the AIDS club?  The really ambiguous situation is that no matter what level your CD4's are at if you've had multiple or by some definitions one or more opportunistic infections then you also have AIDS.

The definition has changed and never seems entirely consistent to me.   I could care less about the label anymore, but understand why others don't care for it and I can see why some like it.

My understanding was that the AIDS diagnosis dealing with the CD4's below 200 was primarily for insurance purposes and disability claims so that they'd have some generalized standard they could quantify in determining benefits and treatment protocols.

Wesley
Diag. 3/06  Infected aprx. 2 mo. Prior
Date        CD4   %      VL
4/6/06     627    32    36,500     NO MEDS YET!
6/7/06     409    27    36,100
8/23/06   408    25     22,300
1/2/07     354    23     28,700
2/9/07     139    30     23,000  Hep A Vaccine same day???
2/21/07   274    26     18,500 
3/3/07    RX of Truvada/Sustiva Started.
4/5/07    321     27      Undectable 1st mo.  
5/16/07  383     28    Undectable 2nd mo.
8/10/07  422     32   UD <48 on new scale!

Offline David_CA

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Re: HIV disease VS. AIDS
« Reply #35 on: August 20, 2007, 08:46:24 am »
According to my Doctor, here in the UK the AIDS label is only applied when your numbers have dropped below 200 and you have had an Aids defining disease, with out the disease and under 200 you are still HIV.

I believe this is true here in the US, too.  At any rate, I have AIDS.  It makes sense, to me, that the term sticks.  Many folks do fine (i.e. no OI's) with a low t-cell count.  Not me.  I have to be different.  I have to get caught up with a nasty case of PCP pneumonia with a CD4 count in the upper 200's.  My husband's count was lower than mine and he was never sick.  This tells me that my immunity system isn't quite as .... something.  I'm not sure if it's not as good, not as efficient, whatever.  I got sick with something that generally effects people with much lower CD4's.  What having an AIDS diagnosis means, to me, is that I have to be more concerned about my immunity system and health in general, that I'm more likely to have another OI if my CD4's drop.  Every day I'm reminded I have AIDS.  Atripla and Bactrim remind me that I'm HIV+.   The fact that I don't have the lung capacity that I used to is a direct result of PCP - that reminds me I have AIDS.  I can feel it when I walk to my office from my car, if I don't park close.  I get winded much easier now, and I consider myself to be in good shape.  I've heard that people usually live through two rounds of PCP and by the third so much damage is done that they don't live.  I'm not sure if that's true or not, but I can tell you having it once changed me permanently, not only on paper (with an AIDS diagnosis) but every time I breathe. 

Search for posts by Christine or dad1216 (and more) and you'll gain a little, if not a lot, of insight.  I know I sure have.  I think perhaps the term "HIV disease" sounds nicer to some and it may carry less stigma or something, who knows.  To me, it just confuses things.  Some are LTNP's, some advance quickly, but I'd say that, at this point in time, most advance steadily, go on meds, and become undetectable, CD4's increase, and they live asymptomatically for years, but others don't have it so well and progress to AIDS very quickly.  Read more in the 'Long-term Survivors' forum

I'm here, although at the time there was some concern from the Dr's as to how well I'd do post-PCP.  I say I'm very fortunate and doing fine, which is mostly true.  Life is good, and it goes on, but I know that it's not the same.  Neither is my diagnosis.  I have AIDS and it's here to stay!

David (who thinks there's a place for the term 'AIDS' but NOT when talking to family members)

« Last Edit: August 20, 2007, 11:01:31 am by David_NC »
Black Friday 03-03-2006
03-23-06 CD4 359 @27.4% VL 75,938
06-01-06 CD4 462 @24.3% VL > 100,000
08-15-06 CD4 388 @22.8% VL >  "
10-21-06 CD4 285 @21.9% VL >  "
  Atripla started 12-01-2006
01-08-07 CD4 429 @26.8% VL 1872!
05-08-07 CD4 478 @28.1% VL 740
08-03-07 CD4 509 @31.8% VL 370
11-06-07 CD4 570 @30.0% VL 140
02-21-08 CD4 648 @32.4% VL 600
05-19-08 CD4 695 @33.1% VL < 48 undetectable!
08-21-08 CD4 725 @34.5%
11-11-08 CD4 672 @39.5%
02-11-09 CD4 773 @36.8%
05-11-09 CD4 615 @36.2%
08-19-09 CD4 770 @38.5%
11-19-09 CD4 944 @33.7%
02-17-10 CD4 678 @39.9%  
06-03-10 CD4 768 @34.9%
09-21-10 CD4 685 @40.3%
01-10-11 CD4 908 @36.3%
05-23-11 CD4 846 @36.8% VL 80
02-13-12 CD4 911 @41.4% VL<20
You must be the change you want to see in the world.  Mahatma Gandhi

Offline dad1216

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Re: HIV disease VS. AIDS
« Reply #36 on: August 20, 2007, 10:09:09 am »
Call it what you want but giving it a new name does not change the reality.
23 years HIV+ (Oct 88)
11 years AIDS (March 00)

CD4=83  VL=47,000  (May 2011)
CD4=63  VL=78,470  (Oct 2010)
Prezista..Norvir..Truvada

Offline Ann

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Re: HIV disease VS. AIDS
« Reply #37 on: August 20, 2007, 11:32:36 am »
A rose by any other name....
Condoms are a girl's best friend

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Offline ubotts

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Re: HIV disease VS. AIDS
« Reply #38 on: August 20, 2007, 12:04:06 pm »
I so hate that term too. And am under the same impression as you and Dan on the 200 thing with the cd4.


(who is too high to be technical right now)
  Hi to all..
This is crazy shit..First iam hiv cuz i have 206 tcells, ...later iam labled as full blown aids
because my tcells dropped to 198..........
Later on My tcell are 247, so now iam back to hiv statics..
I feel the same no matter what my numbers say..I don't look or feel full blown when my numbers are under 200, nor do i look or feel like hiv if my numbers are a bit over 200..
This is all scientific crap..numbers that is..
It helps the doctors to determine whats what..but, it really doesn't make a difference to
me, because i feel the same way..
Only when i was down to 27 tcells, did i feel weak n crappy so i went to a dr. and then i
was told i had full blown aids..So them i go on meds..
My numbers have been up and down during the last 5 yrs on meds..My viral load is undetectable for 4 yrs now..So go with what u feel..Dint get caught up in numbers..
And screw the ignorant people who say, we had aids..My sister in law is a nurse and
should know better, ( you would think) but she shuns my nieces and nephews from me
due to the fact that iam hiv pos. or having aids..its all the same to her and some others
who are ill informed...........
Just worry about you and how you feel..
and that's all iam gonna say for now..cuz i don't want to get into to it, and i really can let myself lose on this thread.. :-X
Live Love Laugh and dance like no ones watching.
Laughter is the best medicine, so try to have a laugh everyday..Even if your not feeling your best, think about something that was funny at one time in your life and work with it..   :o)

Offline Andy101

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Re: HIV disease VS. AIDS
« Reply #39 on: August 20, 2007, 03:13:14 pm »
Advice need please guys,, I have read through this thread and it raise danother question,, every one has seemed to mentiont that once your cd4 drops below 200,, that you have an AIDS diagnosis,, can anyone tell me where this is written.. just asking coz my cd4 has just crashed ??

cheers

Andy
still thinking about this one !!!

Offline leatherman

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Re: HIV disease VS. AIDS
« Reply #40 on: August 20, 2007, 03:25:44 pm »
According to the US National Institute of Allergy and Infectious Disease (http://www.niaid.nih.gov/factsheets/hivinf.htm:

"The term AIDS applies to the most advanced stages of HIV infection. CDC developed official criteria for the definition of AIDS and is responsible for tracking the spread of AIDS in the United States.
CDC's definition of AIDS includes all HIV-infected people who have fewer than 200 CD4+ T cells per cubic millimeter of blood. In addition, the definition includes 26 clinical conditions that affect people with advanced HIV disease."

AIDS in the US = (cd4 < 200) + 1 Opportunitic Infection
(Using the label "AIDS" is useful for determining disability eligibility)
leatherman (aka Michael)

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You were leaning in to speak to me
Acting like a mover shaker
Dancing to Madonna then you kissed me
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Offline Andy101

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Re: HIV disease VS. AIDS
« Reply #41 on: August 20, 2007, 03:28:22 pm »
Thanx for that Leatherman,, Does anyone know how that translates in the the UK ??
still thinking about this one !!!

Offline Poz Brit

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Re: HIV disease VS. AIDS
« Reply #42 on: August 20, 2007, 04:01:36 pm »
Much the same as per the link.

Offline Andy101

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Re: HIV disease VS. AIDS
« Reply #43 on: August 20, 2007, 04:12:35 pm »
thanx
still thinking about this one !!!

Offline RapidRod

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Re: HIV disease VS. AIDS
« Reply #44 on: August 20, 2007, 04:25:14 pm »
A diagnosis of AIDS is made whenever a person is HIV-positive and:
he or she has a CD4+ cell count below 200 cells per microliter OR
his or her CD4+ cells account for fewer than 14 percent of all lymphocytes OR
that person has been diagnosed with one or more of the AIDS-defining illnesses listed below.

Candidiasis of bronchi, trachea, or lungs (see Fungal Infections)
Candidiasis, esophageal (see Fungal Infections)
Cervical cancer, invasive‡
Coccidioidomycosis, disseminated (see Fungal Infections)
Cryptococcosis, extrapulmonary (see Fungal Infections)
Cryptosporidiosis, chronic intestinal (>1 month duration) (see Enteric Diseases)
Cytomegalovirus disease (other than liver, spleen, or lymph nodes)
Cytomegalovirus retinitis (with loss of vision)
Encephalopathy, HIV-related† (see Dementia)
Herpes simplex: chronic ulcer(s) (>1 month duration) or bronchitis, pneumonitis, or esophagitis
Histoplasmosis, disseminated (see Fungal Infections)
Isosporiasis, chronic intestinal (>1 month duration) (see Enteric Diseases)
Kaposi's sarcoma
Lymphoma, Burkitt's
Lymphoma, immunoblastic
Lymphoma, primary, of brain (primary central nervous system lymphoma)
Mycobacterium avium complex or disease caused by M. Kansasii, disseminated
Disease caused by Mycobacterium tuberculosis, any site (pulmonary‡ or extrapulmonary†) (see Tuberculosis)
Disease caused by Mycobacterium, other species or unidentified species, disseminated
Pneumocystis carinii pneumonia
Pneumonia, recurrent‡ (see Bacterial Infections)
Progressive multifocal leukoencephalopathy
Salmonella septicemia, recurrent (see Bacterial Infections)
Toxoplasmosis of brain (encephalitis)
Wasting syndrome caused by HIV infection†


Offline Matty the Damned

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Re: HIV disease VS. AIDS
« Reply #45 on: August 20, 2007, 05:13:30 pm »
Matty the Damned is proud of his AIDS status.

MtD

Offline Cerrid

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Re: HIV disease VS. AIDS
« Reply #46 on: August 20, 2007, 05:32:10 pm »
So, when I had a CD4=1 but only a "candidiasis oropharyngal", I did not formally have AIDS? That's weird but I guess I can live with that.
"Boredom is always counterrevolutionary. Always." (Guy Debord)

Offline Matty the Damned

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Re: HIV disease VS. AIDS
« Reply #47 on: August 20, 2007, 06:08:29 pm »
Cerrie,

Candida of that sort and a CD4 count of 1 constitutes an AIDS diagnosis.

MtD

Offline David_CA

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Re: HIV disease VS. AIDS
« Reply #48 on: August 20, 2007, 07:30:33 pm »
A diagnosis of AIDS is made whenever a person is HIV-positive and:
he or she has a CD4+ cell count below 200 cells per microliter OR
his or her CD4+ cells account for fewer than 14 percent of all lymphocytes OR
that person has been diagnosed with one or more of the AIDS-defining illnesses listed below.

Those OR's are what I was missing from the definitions above.  I know my Dr. has me listed as having AIDS, but according to one of the somewhat vague definitions above, I'm merely HIV+ as I didn't have a CD4 count < 200 while being HIV+ and having PCP.  I'm glad to know I haven't lost my status!   ;)

David
Black Friday 03-03-2006
03-23-06 CD4 359 @27.4% VL 75,938
06-01-06 CD4 462 @24.3% VL > 100,000
08-15-06 CD4 388 @22.8% VL >  "
10-21-06 CD4 285 @21.9% VL >  "
  Atripla started 12-01-2006
01-08-07 CD4 429 @26.8% VL 1872!
05-08-07 CD4 478 @28.1% VL 740
08-03-07 CD4 509 @31.8% VL 370
11-06-07 CD4 570 @30.0% VL 140
02-21-08 CD4 648 @32.4% VL 600
05-19-08 CD4 695 @33.1% VL < 48 undetectable!
08-21-08 CD4 725 @34.5%
11-11-08 CD4 672 @39.5%
02-11-09 CD4 773 @36.8%
05-11-09 CD4 615 @36.2%
08-19-09 CD4 770 @38.5%
11-19-09 CD4 944 @33.7%
02-17-10 CD4 678 @39.9%  
06-03-10 CD4 768 @34.9%
09-21-10 CD4 685 @40.3%
01-10-11 CD4 908 @36.3%
05-23-11 CD4 846 @36.8% VL 80
02-13-12 CD4 911 @41.4% VL<20
You must be the change you want to see in the world.  Mahatma Gandhi

Offline BT65

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Re: HIV disease VS. AIDS
« Reply #49 on: August 20, 2007, 07:39:03 pm »
Damned one-
  I also am proud of my status.  We rock!
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

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https://www.poz.com/basics/hiv-basics/treatmentasprevention-tasp

 


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