POZ Community Forums
Main Forums => I Just Tested Poz => Topic started by: BUZZCUTT on November 23, 2008, 12:43:53 pm
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Hello All!
I do not want to sound redundent but if you are diagnosed with Aids with a CD4 of 11 and hospitalized with PCP/Thrush and are on treatment and your CD4 is going up - then why can't your diagnosis change from Aids to HIV - I know Aids results from the HIV infection - So If my CD4 goes up to 1000 will i still be considered as having aids? or will I be HIV + with Aids - I am confused on this-
Thanks
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When I had my Aids diagnosis in 2003, with 16 t-cells and a viral load of 500,000, I also had esophageal thrush, along with Shingles and 30 pound weight drop, and eventually pneumonia, and a few other opportunistic infections. As far as I am concerned , I am a person living with Aids. Even though my numbers are above 300 and undetectable. That's just the way I look at it.
Ray
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Hey Ray, thanks - i guess thats the way i am going to have to look at it - does the medications keep the OI's in check or is a person still prone to them?
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My understanding.... is that AIDS is an additional diagnosis to being HIV positive. It was explained to me early in this year in a class that once you have AIDS the label does not go away.
My suspicion is that the label is based on treatment 10 years ago and that diagnostic labeling has not caught up with the reality of current treatments. There seem to be a wide range of knowledge levels even among HIV organizations. For example, many do not understand viral tropism or the importance of chemochine receptors. (aka CCR5 and CCXR4 or R5 and X4).
I would not let the stupidity of others drag you down. Just like there are people who don't understand being gay, there is a larger population of people who do not understand HIV. The most important thing is to know that our treatment options have never been better and you aren't the first person to have your "pet" (HIV) bring home some "friends" and have a party in your throat/ass/dick/vagina/mouth/etc. You can evict them with good meds. Although, the pet never goes away. lol.
Best Regards,
B
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An AIDS diagnosis stays that way, even when the patient's cd4 count rises above 200. This if for basically two reasons, one scientific (albeit sometimes disputed and, hopefully someday, obsolete) and the other is statistical.
Ryan White, grants for scientific research, AIDS Service organization considerations and other funding often hinges on the number of reported AIDS cases nationwide. This number also help to determine outreach and financial consideration/monitoring in any given locality.
People with asymptomatic HIV are considered to be of lower medical and financial priority. A great deal of funding is tied into this number, which is considered a permanent designation. Were this number to change from month to month, then it would be difficult to establish the level of need from year to year. From a statistical standpoint, it makes sense to determine the number of people diagnosed with AIDS.
From a scientific standpoint, many researchers view HIV drugs and treatment the same way that people view, say, Rogaine for hair growth. If treatment money dries up, due to either national/state/local funding changes or changes in a person's circumstances (losing one's job or insurance, etc) then in many if not most cases, the patient deteriorates rather quickly back into dangerous territory. Even if the cd4 count drops slowly, the rise in viral load (not to mention the notion if drug resistance, depending upon the cirsumstances) can speed up the process by which a person is more likely to experience symptoms.
So it is true that we can have immune systems well within a healthy range, and an undetectable viral load, and even a robust immune system (permanent damage notwithstanding) on treatment. A caveat, many researchers argue, is that this is a condition dependent upon continual drug therapy, and that ceasing that therapy (or becoming resistant) can often have a rapid begative impact.
Just as some damage caused by other illnesses can be permanent even when the underlying illness is cured (such as strep throat, gonorrhea,advanced syphilis, etc), so can damage done during an AIDS related illness (and some argue, simply having a very high viral load, especially in the brain and spinal fluid) be permanent. Therefore it is important for people, once diagnosed with AIDS, to be more careful about their health and symptoms even when the meds "restore" them to health.
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Buzzcut, now that you've brought up this question twice in separate threads I really have to ask you why this matters so much to you? If you can just wear the "HIV" label and not the "AIDS" label does this assist you somehow mentally?
The fact of the matter is that it's just a technicality. I was diagnosed with AIDS defining cd4 numbers 15 years ago, yet for the past year my cd4's have been consistently over 1,000. Once they were even 1425. Does that SOUND like AIDS? Do I get any OI's or are in danger of getting any? No, but technically I'm still classified by the CDC as having AIDS.
WHO CARES???
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Miss Philicia,
Congrats on your status and numbers.... you go girl!
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Miss Philicia ALWAYS turns it out :)
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Buzz, furthermore, if you ever get to the place where your disese keeps you from being able to work; the AIDS diagnosis puts you in a completely different catagory for collecting from SSDI, and also the IRS uses it for their perameters. As stated above, it also helps with ASOs and other state programs.
I have been HIV+ since 1983, and AIDS since 1994.
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Thanks Moffie,Jkinatl,and Hot Puppy for your response - i am sorry Miss P if i posted the same question 2x in 2 threads - i am new at this forum thing and i forgot - to anwer your quest Miss P it does matter to me mentally - aids sounds so terminal - but it is the diagnosis i have and have to live with it and it is taking me time to accept and talk about this illness
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Hey Buzzy
... mentally - aids sounds so terminal - but it is the diagnosis i have and have to live with it and it is taking me time to accept and talk about this illness...
was wondering if it might not be the mental, "terminal illness" thing.
But ...
you know...
if you are willing to take advantage of it...
that can be a very LIBERATING thing.
Yes. You had AIDS. It's serious. You ALMOST DIED.
But you've been given a reprieve of 1, or 10, or 20, or 40 or maybe even 60 years. Sure you have to be careful with your health. Sure those years are not guaranteed. And yes, some avenues may be closed off to you.
But now you know how much those years are worth to you.
So take them....
and RUN!
Live, laugh, love... Be strong
A
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The way i see things, its HIV that you have once your numbers are up again, i dont see much logic in saying that someone have aids just because the cd4 went under 100, 50, 40... the important thing is that they grew up again.
The way people see that, does not matter, what matters is that you have equal chances of being well such as HIV+ people.
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The way i see things, its HIV that you have once your numbers are up again, i dont see much logic in saying that someone have aids just because the cd4 went under 100, 50, 40... the important thing is that they grew up again.
Except, of course, for the fact that there are naive and memory CD4 cells. Losing a significant amount of the latter, even when later bolstered by a large amount of the former, can prove significantly problematic. Even when, on paper, the numbers themselves look good.
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The way i see things, its HIV that you have once your numbers are up again, i dont see much logic in saying that someone have aids just because the cd4 went under 100, 50, 40... the important thing is that they grew up again.
The way people see that, does not matter, what matters is that you have equal chances of being well such as HIV+ people.
I seem to remember in previous discussions about the aids label that it is important where funding is concerned. Something about higher numbers of aids diagnosises translating into higher funding. Maybe someone who knows the specifics of this concept can chime in. Moffie?
Ann
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I just don't see the usefulness in getting all mentally bent out of shape about the word "AIDS" vs. "HIV" -- this indicates something deeper and more problematic, IMO, and I think that this is an issue quite overlooked purposefully by many on this board.
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I just don't see the usefulness in getting all mentally bent out of shape about the word "AIDS" vs. "HIV" -- this indicates something deeper and more problematic, IMO, and I think that this is an issue quite overlooked purposefully by many on this board.
While I absolutely agree that getting used to the "labels" associated with HIV and AIDS is maybe the most important thing a person diagnosed can do, I admit that it can take time to do it. Sometimes an awful lot of time. And, well, in my own experience, it comes around now and again, just when I think I am cool with all of it.
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Thanks Jkinatl2, lusopt and ann - sometime i think about things too much
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Another way of looking at the aids label is instead of thinking Acquired Immune Deficiency Syndrome, think Acquired Immune Deficiency SURVIVOR. It works for me...
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Thanks Ann - I will look at it that way from now on
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I have participated in a lot of this AIDS vs.HIV diagnosis my partner. He was diagnosed in Sept. with 14 T-cells, which I think means he is considered to have AIDS. I have had many discussions where he thinks that nearing the 200 t-cell marker that he will then "only have HIV." There is a psychological need for him to believe he no longer has AIDS, and that the change means he will not be as “sick.” I also wonder if it is due to the fact he was diagnosed with AIDS, instead of being considered HIV positive. I wonder if my diagnosis as HIV positive with 425 t-cells is causing him to feel alone. I certainly hope that is not the case because his diagnosis has saved me from having a late diagnosis, we are in this together. Sorry for rambling, but society has once again created a label to simplify a complex and scary issue that too many of us have to deal with.
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I agree. I was recently diagnosed and before I got my initial labs back I prayed and prayed that my CD4 count was above 200 because I didn't want to have an AIDS diagnosis. And then I started asking myself why. I realized it had everything to do with my mental thought of having what society terms as AIDS. Now, I realize that it really doesn't matter having an AIDS diagnosis vs an HIV diagnosis. I am going to still live a long, happy, healthy life.
Also, my doctor told me that they don't use that anymore as a determination for an AIDS diagnosis.
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I hate to tell ya, but the mean people out in society that are going to stigmatize you about AIDS don't care if you have 198 t-cells or 202. You still have AIDS to them either way.
I've also looked LESS sick at 185 t-cells than I did at 520, but I'll save that story for another day.
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I hate to tell ya, but the mean people out in society that are going to stigmatize you about AIDS don't care if you have 198 t-cells or 202. You still have AIDS to them either way.
I've also looked LESS sick at 185 t-cells than I did at 520, but I'll save that story for another day.
I want to hear the story when its another day
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Buzz, furthermore, if you ever get to the place where your disese keeps you from being able to work; the AIDS diagnosis puts you in a completely different catagory for collecting from SSDI, and also the IRS uses it for their perameters. As stated above, it also helps with ASOs and other state programs.
I have been HIV+ since 1983, and AIDS since 1994.
What do you mean by the IRS uses AIDS for their parameters?
Thanks
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ive been looking in here for a few months now and the site has been a great help!! this is my first post!!
see i was diagnosed with a cd4 of 129 back in June and high viral load (cant remember what as i was still in shock). i did not have any OI's. I count myself lucky cause i found out my x had it and then it got me thinking and i did the test,!!
anyway the point, ive seen many doctors as i had a few problems when i started the med's. none of them used the term AIDS and all said I was HIV+ and we are taking it from there!! so i was never told i had AIDS, i consider i dont have AIDS but i am HIV+!! i think doctors dont used the term cause it is upsetting to some!! thats my experience
oh im on Kaletra/Truvada and my cd4 is 330 and undectable, i still have my really really bad days but it is getting easier!!
so buzzcut your HIV+, forget about the AIDS and lets have a fun future:-)
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Jason35, welcome to the forums.