POZ Community Forums
Main Forums => Living With HIV => Topic started by: LiveWithIt on March 04, 2010, 05:04:53 pm
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I was once told that once you have Aids you will always be classified as having Aids. Is this still true? Or if your viral load is at or near Zero are you just HIV positive?
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Once you are classified as having AIDS you'll always be classified as having AIDS in the state and national data base.
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Once you are classified as having AIDS you'll always be classified as having AIDS in the state and national data base.
I will have to ask my doctor to see what they say.
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"AIDS" is just a clinical label and really not something for folks to lose their shit over. I appreciate that it's a laden term but y'know . . .
MtD
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"AIDS" is just a clinical label and really not something for folks to lose their shit over. I appreciate that it's a laden term but y'know . . .
MtD
You are still a delicate wordsmith.
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You are still a delicate wordsmith.
Fuckin' oath! :)
MtD
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Fuckin' oath! :)
MtD
Your anger can't be good for your health.
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Your anger can't be good for your health.
Au contraire! It's what keeps me going. Well that and vodka.
MtD
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I honestly dont see much of a difference between the two except that at least from what I understand once you get aids its a little harder to build and maintain your immune system up and until you get your immune system back up your suspectible to OI's.
I talked to my doc about it yesterday when she said my numbers we're 152. and she said not to worry its just classification and I can still say "hey I have HIV and here's my CD4 number"
But I think the meds are really good these days and even with Aids we can live a long time as long as we stick to the pills =)
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From the perspective of an HIV+ person, and American citizen, where health care is anything but a sure thing, and living wages are hard to come by - i suggest you milk the term "AIDS" for anyway the label will help you to fight and stay healthy with a normal life. For those closest to you, you can educate them about the difference and the current situation of people living with HIV.
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I honestly dont see much of a difference between the two except that at least from what I understand once you get aids its a little harder to build and maintain your immune system up and until you get your immune system back up your suspectible to OI's.
I think for most people it's a psychological thing that they have trouble getting past. Frankly it's never made much sense to me, but this question surprisingly surfaces here about every other month. I don't see what the big deal is that some government bureaucracy continues to classify your diagnosis one way or the other. They just use it as a statistic.
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I think for most people it's a psychological thing that they have trouble getting past. Frankly it's never made much sense to me, but this question surprisingly surfaces here about every other month. I don't see what the big deal is that some government bureaucracy continues to classify your diagnosis one way or the other. They just use it as a statistic.
It may be a good thing. Having "Aids" might help you get assistance with meds, etc. It's much harder to say I have Aids, than I am HIV positive. There is a difference. Some people are HIV positive and have never had "Aids".
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I always thought the AIDS diagnosis was in the "Dark times" when there were no meds that it was an indicator that the end was near. It really isn't applicable anymore unless you're out of treatment options eh?
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I always thought the AIDS diagnosis was in the "Dark times" when there were no meds that it was an indicator that the end was near. It really isn't applicable anymore unless you're out of treatment options eh?
This is the first answer I found:
What is HIV (human immunodeficiency virus)? HIV simply means that you have tested positive for the virus. It does not become AIDS usually for ten years or until immune system problems appear.
The word is less used now that there are treatments and HIV is controllable like Diabetes, but less damaging. (as far as we know)
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It may be a good thing. Having "Aids" might help you get assistance with meds, etc. It's much harder to say I have Aids, than I am HIV positive. There is a difference. Some people are HIV positive and have never had "Aids".
Nobody forces you to "say" it -- like I said, it's just for statistical purposes I've found.
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It really isn't applicable anymore unless you're out of treatment options eh?
or if you first present tomorrow for the first time at the ER with PCP, cd4 count of 10, and viral load of 680,000 ;)
today someone will find out that not only have they been HIV positive for some time :'(; but that it has progressed to the AIDS stage :'( and demands immediate treatment :o
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in my part of the UK, your HIV, what ever, unless your a bit of a drama queen, and need to make a point, or an impression?
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in my part of the UK, your HIV, what ever, unless your a bit of a drama queen, and need to make a point, or an impression?
I'm so glad that it's not only Americans who can't write "you're" correctly.
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I'm so glad that it's not only Americans who can't write "you're" correctly.
There's a FaceBook page for that :D
Become a fan of "Knowing the Difference Between "Their", "There" and "They're""
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I can't remember and am far too lazy to check but...
I thought a CD4 count below 200 was used only in the USA to "define" AIDS and most other countries define AIDS by OIs and other indicators of severe immune suppression. It's a minor distinction to me since a CD4 < 200 mandates HAART regardless of other factors. In the USA I have AIDS only because of my low CD4 cell counts past and present. I have yet to experience a definitive OI. In Canada I might not have AIDS but I'd be on HAART still.
"HIV disease" is what I've been using since the 90s but many people still don't understand HIV starts its attack almost immediately after infection. "AIDS" seems to register more fully so I often use the term to be brief but as far as I'm concerned I don't have AIDS, not what killed most of my friends and acquaintances over the last 25+ years.
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I was told I would always be considered to have AIDS--even though my numbers bounced back. Here in KY with an AIDS diagnosis, you're required to sign up for disability to get ADAP. You don't have to actually get it. You just have to show you signed up. I suppose if you have a job with benefits and just need a little assistance from ADAP, they may not make ya do that.
For me, that AIDS diagnosis hangs over my head. Even though I know it doesn't really matter, it sometimes comes up when seeing docs and dentists. They sometimes ask whether you've ever been diagnosed with AIDS. I have to say yes.
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my understanding of it is this if your cd4's drop below 200 and u have an OI and are classified as having AIDS then even if they bounce back up to 1000 and u no longer have an OI you are still classified as having AIDS because this makes it easier to get back on to Soc Sec Disabiility for those who may have been on it, then have a rebound and go off it and back to work, then get sick again --- a person doesn't have to go all the way back thru the process ---- at least that is my understanding of it from what a case manager told me and my ex a while back
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I thought a CD4 count below 200 was used only in the USA to "define" AIDS and most other countries define AIDS by OIs and other indicators of severe immune suppression... not what killed most of my friends and acquaintances over the last 25+ years.
Boo Radley, I read the same thing. The US is the only country that uses CD4 count to define AIDS. I have two friends who are having a really tough time right now because of AIDS. One, sad to say, is on his way out and the other is dealing with infection after infection and infection on top of infections. As I was sitting in the hospital visiting one of them he was telling me that he was happy to not have AIDS by definition. His tcells have never been below the 500 range and his pnemonia is not PCP. But yet he was in the hospital with pnemonia 3 times in the past 5 months! That is one thing about AIDS that is confusing to me. Isn't AIDS a breakdown of the immune system? It is clear that his immune system is not functioning properly regardless of his normal tcell count. Nobody can deny that he has AIDS. People put me in the same boat as him because my tcells are low. But the fact remains, I don't have pnemonia and my body is MUCH stronger than his for he is frail from being so sick. I don't know what to make of this.
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HIV- people can have recurrent pneumonia (non-PCP). Your error is in attempting to connect every illness with HIV infection. Sometimes it is, sometimes it is not. The bottom line is that 500 cd4 doesn't prevent anyone from getting non-PCP pneumonia or other respiratory infections like bronchitis.
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non-PCP pneumonias
Aspiration Pneumonia
Bacterial Pneumonia
Chlamydial Pneumonia
Drug-Resistant Pneumonia
Eosinophilic Pneumonia
Fungal Pneumonia
Mycoplasma Pneumonia
Pneumococcal Pneumonia
Streptococcal Pneumonia
Viral Pneumonia
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Boys and Girls;
This one comes up about every other month, as has been stated.
HIV= Human Immunodifency Virus. Or, you get this when infected.
AIDS= (If you have HIV, please learn that these are both acronyms so they are capitalized) CD4 cells have dropped below 200, by the U. S. Centers for Disease Control. Other countries also use the 200 CD4 for clarity, but also add, as is true here also, any AIDS defining illness, such as PCP, MAC, or any other of the many Opportunistic Infections.
Pretty simple. Confusion lies with the various things that are keyed by AIDS, such as Doctors who need to know the score, and also in many countries it triggers the possibility of financial and drug assistance, of various forms.
Not so much in the United States any more, since the Social Security Administration has fully accepted the bullshit that HIV/AIDS is simply a chronic condition and no longer a fatal disease. Funny how politics, drug companies, and ignorant governing bodies seem to be able to re-define science to make their own agendas more important than the people who are living with this disease.
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Moffie, you are so correct, as usual. I think, here in the UK, they wish to lessen the severity of AIDS and try to call it HIV, they tell you it's no worse that diabetes, but they don't tell diabetics, it no worse than HIV.
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they tell you it's no worse that diabetes, but they don't tell diabetics, it no worse than HIV.
I've always found that line of thinking to be some ludicrous Pollyanna BS. You are so right: it is interesting how the inverse does not apply.
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Yes-from a clinical perspective within the United States; once your CD4 count is less than 200 you are clinically categorized as having AIDS. This diagnosis never changes. In 2004 I was diagnosed with AIDS with a CD4 of 132 and a viral load of over 100,000 copies. Even if your CD4 count hopefully fluctuates, you are still diagnosed with AIDS!
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I have family members and friends with diabetes and to be honest, I'd rather have AIDS. My quality of life is better than theirs.
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Etay . I have both Aids and diabetes . For the most part I can control my diabetes with diet and exercise . That doesn't work well for Aids my friend .
It would be better if you say what you really think about aids and cut out this passive aggressive crap .
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I watched my Mother die from the side effects of Diebetes Etay, and on one thing, I do agree with you. Her death was NOT something I would choose to do either.
HOWEVER, that being said, you are NOT healthy under any definition of the word, when taking into account your numbers. You know Etay, ignorance is usually bliss, however you my friend, are not ignorant, nor are you blissful, or you wouldn't spend your precious time here on this forum trying to persuade us that you are denying the reality of HIV/AIDS. What is your reality is denial, and denial of the most dangerous sort.
You know Etay, you stated in another thread that you had legitimate questions about HIV/AIDS, yet you felt uneasy in asking them here. I would say that everytime you ask a question, you do so with a defined agenda, and that agenda keeps you from hearing or reading what people are trying to say to you. If you really want to know, and you really want to admit you are in need of true knowledge that you will truly act on; then maybe we would be more inclined to really help you out, however, you have blocked that on all fronts.
Wake up buddy, you are walking a very dark pathway by refusing to take medications for your HIV/AIDS.
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... That is one thing about AIDS that is confusing to me. Isn't AIDS a breakdown of the immune system? It is clear that his immune system is not functioning properly regardless of his normal tcell count. Nobody can deny that he has AIDS. People put me in the same boat as him because my tcells are low. But the fact remains, I don't have pnemonia and my body is MUCH stronger than his for he is frail from being so sick. I don't know what to make of this.
Your friend doesn't have AIDS in the USA (and several other developed countries) if his CD4 count is over 200 and >14% of lymphocyte count and he/she's never had an OI. We can all have other infections and diseases regardless of HIV status. I don't know your friends but each of us is unique (as are our infections very soon after we become infected) and I've been really fucking lucky. That's what I meant by the reference to many others who are no longer here.
Etay, I believe it's presumptuous to lecture you about the dire risk you're in. For all I know you'll live to be 125. Or you may develop PCP and die in a few weeks. Please practice safer sex. Please don't procreate. It's not fair to allow a child to die because of parental hubris & ignorance, as the late AIDS denialist Christine Maggiore did with her 3 year old daughter. Otherwise live as you desire and good luck.
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I always thought the AIDS diagnosis was in the "Dark times" when there were no meds that it was an indicator that the end was near. It really isn't applicable anymore unless you're out of treatment options eh?
Fortunately. It really is more of a clinical term I think when it comes to viral load and cd4 count. It's always refreshing to read how far we have come and to know it's not something that means death within a couple of years.
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I've always found that line of thinking to be some ludicrous Pollyanna BS. You are so right: it is interesting how the inverse does not apply.
It may be, but it is very well meant. The fact is that many people's lives are either ruined or very dramatically darkened by AIDS hysteria. Look at the article about the people in China who are sure that they are gravely ill and have gotten tested again and again despite always coming back negative. In another country I was reading about a xenophobic "get the foreigners out" sort of campaign, and one of the main things they were accusing foreigners of was "spreading AIDS". Even here in the New York, I've had an apparently sophisticated and sane gay man become hysterical when I told him that I had HIV. If spreading the idea that "it's no worse than diabetes" can combat this kind of thing, then by all means bring it on.
In a wierd way diabetes suffers from the opposite extreme. For whatever reason, I think a lot of people may underestimate its severity.
I have two friends who are having a really tough time right now because of AIDS. One, sad to say, is on his way out...
Etay, I'm sorry to hear you say this about a friend! I hope it isn't so! What exactly does he have?
and the other is dealing with infection after infection and infection on top of infections. As I was sitting in the hospital visiting one of them he was telling me that he was happy to not have AIDS by definition. His tcells have never been below the 500 range and his pnemonia is not PCP. But yet he was in the hospital with pnemonia 3 times in the past 5 months!
Is either one of these friends of yours taking meds?
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It may be, but it is very well meant. The fact is that many people's lives are either ruined or very dramatically darkened by AIDS hysteria. Look at the article about the people in China who are sure that they are gravely ill and have gotten tested again and again despite always coming back negative. In another country I was reading about a xenophobic "get the foreigners out" sort of campaign, and one of the main things they were accusing foreigners of was "spreading AIDS". Even here in the New York, I've had an apparently sophisticated and sane gay man become hysterical when I told him that I had HIV. If spreading the idea that "it's no worse than diabetes" can combat this kind of thing, then by all means bring it on.
In my opinion it is a lose-lose situation, Nestor.
When people relax too much about HIV then it becomes necessary to create a thread like the one that Tim had to open [outlining some of more scary and serious things that this bug, if untreated, can bring about]. When I hear from some people that AIDS is no longer a problem 'cause you can just "pop a pill and things are peachy" it really makes my blood boil (especially since I have heard this from some young, naive, self-deluded gay fellas who are probably getting exposed to it).
On the other hand, when ignorance around the virus still makes some folks (usually those in a lower risk group) to believe that you can still catch HIV from a doorknob or a massage, or that there are evil HIVers out there "infecting innocent people on purpose" then you realise that we are still in the dark ages when it comes to education around this subject.
Not sure where the answer can be found. I still believe that a somewhat grim picture needs to be painted around this virus, not particularly around life-span or the difficulties of treatment (we know well things are way better than just a decade ago), but around prevention and around avoidance of treatment.
Just me twopence.
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Nestor, the one who is dying has been on meds for several years. The one with the constant infections is not on meds. His numbers remained "good". Tcells 500-600 VL <1000. He is a hemophiliac though and takes factor 8.
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Nestor, the one who is dying has been on meds for several years. The one with the constant infections is not on meds. His numbers remained "good". Tcells 500-600 VL <1000. He is a hemophiliac though and takes factor 8.
I was a LTNP for 21 years my numbers crashed and ended up in the hospital for over a month and my CD4s was 1400 and my VL never got over 4500 in those 21 years. On admission to the hospital my CD4s were 52 5% VL was around 10,000. AIDS diagnosis with an OI.
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I'm so old school, I still say I have GRID.
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I was a LTNP for 21 years my numbers crashed and ended up in the hospital for over a month and my CD4s was 1400 and my VL never got over 4500 in those 21 years. On admission to the hospital my CD4s were 52 5% VL was around 10,000. AIDS diagnosis with an OI.
That's terrible! Do you mean that 1400 was your last CD4 count before the crash? If so, how much time passed between it and the 52? Or was that the average over the 21 years?
Someone else I've met online had a similar case: an OI despite a tiny VL. I'm really confused by that.
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That's terrible! Do you mean that 1400 was your last CD4 count before the crash? If so, how much time passed between it and the 52? Or was that the average over the 21 years?
Someone else I've met online had a similar case: an OI despite a tiny VL. I'm really confused by that.
3 months inbetween labs.
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RapidRod, you lost 1350 tcells in 3 months! What OI did you have? I probably read ur story in another post but don't remember it.
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RapidRod, you lost 1350 tcells in 3 months! What OI did you have? I probably read ur story in another post but don't remember it.
Disseminated Histoplasmosis and I still have it.
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I'm assuming you are on meds now. What combo are you on and what r ur numbers now? Will you've in Vegas in Aug?
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I'm assuming you are on meds now. What combo are you on and what r ur numbers now? Will you've in Vegas in Aug?
HIV meds.- Atripla cd4 225 7% vl undetectable. Recently DX from Bactrum. Not sure if I will be in Vegas or not. I work pt in a morgue and for a funeral home and it depends on others vacations. Histo Meds are 400 mg Itraconazole daily will know next week if I have to fight the insurance to go back on Noxafil.
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My doctor prescribed bactrim to me because my tcells are so low. Were you taking anything when you got sick? What does DX mean?
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My doctor prescribed bactrim to me because my tcells are so low. Were you taking anything when you got sick? What does DX mean?
DX=discontinued "after being on it for five years." No I wasn't on meds because CD4s were within the normal range. Bactrim helps prevent PCP but you not being on meds puts you in danger or a host of other OI's. Etay you really should think about starting meds. If you have money concerns your ASO or your ID clinic counselor can help with that. You don’t want an OI of any kind and I urge you to start treatment.
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Thanks for sharing your story with me.
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My CD4's were in the upper 200's when I had PCP and thrush. I was told that I had AIDS then. My understanding is that it indicates an immune system that does not function enough on its own to prevent OI's. Personally, I don't mind saying I have AIDS except to family and potential sex partners, although I'm sure that wouldn't bother many guys.
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Really? I know enough guys that would zip up and run home with their tail between their legs if you disclosed that it makes me not want to say. Not that Hellraiser has been getting any lately. Why is he speaking of himself in the third person? I have no idea.
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Really? I know enough guys that would zip up and run home with their tail between their legs if you disclosed that it makes me not want to say. Not that Hellraiser has been getting any lately. Why is he speaking of himself in the third person? I have no idea.
For sure it would turn off most guys, but if I'm attracted to a guy who tells me he has AIDS (but goes on to elaborate that he doesn't currently have any OI's, etc), I'm good with it. I'm always somewhat ironically amused that more guys bring up that they're HIV+ to me pre-sex now than when I was negative. In fact, I don't remember anybody ever talking to me about being HIV+ before my diagnosis. In the past, I've said that some people have HIV-dar. It's like we can tell others are also HIV+. Of course, like gaydar, it's not 100% accurate.
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I'm so old school, I still say I have GRID.
Gotcha beat, I painted a big red X on my front door.
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Gotcha beat, I painted a big red X on my front door.
Tom I thought you had the biohazard decal on the front door. ;) I know we did have some forum members that had the biohazard tattoo on them.
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I know we did have some forum members that had the biohazard tattoo on them.
I love all my tats, especially my biohaz!
(http://reigningpages.com/leatherman/tats/tattoos/tat5.jpg)
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I love all my tats, especially my biohaz!
(http://reigningpages.com/leatherman/tats/tattoos/tat5.jpg)
ROFL, another one.
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I love all my tats, especially my biohaz!
(http://reigningpages.com/leatherman/tats/tattoos/tat5.jpg)
I have 3 of them.... my first ID doc was examining me one day and asked why I did it. I just gave her a sheepish smile and she gave me a script for Paxil...lol
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I love all my tats, especially my biohaz!
I've thought about getting one of those also...
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For sure it would turn off most guys, but if I'm attracted to a guy who tells me he has AIDS
I am too. Don't know whether it's a matter of I appreciate the honesty or that I feel a kinship to them.
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RR,
Thank you again for sharing your experience with us.
No I wasn't on meds because CD4s were within the normal range.
Indeed, your CD4s were well beyond "normal range"--I think there are only a handful of people here, even ones who are on meds, who have CD4s above a thousand.
Is there a lesson that we should draw from your experience? You were doing everything right--getting your labs done every three months, as is recommended. You had incredibly excellent numbers. So what lesson, if any, should we learn? That you should have predicted the sudden crash and the OI and started meds with a CD4 of 1400? That even someone with a CD4 of 1400 should be on HAART?
I talked about this with my doctor about a year ago. I have various plans of spending a lot of time backpacking, and even joining the Peace Corps where I would be in some remote place for two years. Would it be okay to go that long without having labs done? She said that most people decline slowly and gradually and that as my numbers hadn't even begun to decline, the chances of my descending into what used to be called "full-blown AIDS" in the next couple of years would be quite slim. Your case--and a couple of others like it--are a scary reminder of the exceptions to that rule.
On a broader level, it makes the workings of the virus seem even more mysterious. Does the virus spend 21 years trying to figure out how to attack a strong immune system and then, one day, finally hit upon the "right" way?
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Nonepidemic Gay–Related Kaposi Sarcoma
Several reports documented KS in homosexual men who persistently had no evidence of HIV infection. These patients had an indolent and cutaneous form of the disease, which caused new lesions to appear every few years. Lesions occur most commonly on the extremities and genitalia but can occur anywhere on the skin.[1] These cases may indicate the presence of causal factors other than HIV that homosexual men may be exposed to because of their lifestyle.
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Nonepidemic Gay–Related Kaposi Sarcoma
Several reports documented KS in homosexual men who persistently had no evidence of HIV infection. These patients had an indolent and cutaneous form of the disease, which caused new lesions to appear every few years. Lesions occur most commonly on the extremities and genitalia but can occur anywhere on the skin.[1] These cases may indicate the presence of causal factors other than HIV that homosexual men may be exposed to because of their lifestyle.
You got a reference for this, Margaret?
MtD
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So what lesson, if any, should we learn?
The lesson is that shit happens that's beyond your control. Embrace it.
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RR,
Thank you again for sharing your experience with us.
Indeed, your CD4s were well beyond "normal range"--I think there are only a handful of people here, even ones who are on meds, who have CD4s above a thousand.
Is there a lesson that we should draw from your experience? You were doing everything right--getting your labs done every three months, as is recommended. You had incredibly excellent numbers. So what lesson, if any, should we learn? That you should have predicted the sudden crash and the OI and started meds with a CD4 of 1400? That even someone with a CD4 of 1400 should be on HAART?
I talked about this with my doctor about a year ago. I have various plans of spending a lot of time backpacking, and even joining the Peace Corps where I would be in some remote place for two years. Would it be okay to go that long without having labs done? She said that most people decline slowly and gradually and that as my numbers hadn't even begun to decline, the chances of my descending into what used to be called "full-blown AIDS" in the next couple of years would be quite slim. Your case--and a couple of others like it--are a scary reminder of the exceptions to that rule.
On a broader level, it makes the workings of the virus seem even more mysterious. Does the virus spend 21 years trying to figure out how to attack a strong immune system and then, one day, finally hit upon the "right" way?
I had my labs every three months. I started not feeling well about a month after my last lab. Cause of it crashing is unknown. Ruled as a fluke..
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You got a reference for this, Margaret?
MtD
Sorry I'm getting tired, this is from the other thread about KS. I found it interesting and meant to put it into that thread. Anyway I had never heard of KS occuring specifically in gay men without HIV and it was the "Epidemic" version which is supposed to be specific to people with HIV. It sort of makes sense in this thread but not really.
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Nestor, the one who is dying has been on meds for several years. The one with the constant infections is not on meds. His numbers remained "good". Tcells 500-600 VL <1000.
Etay, I am so sorry to hear about these friends. Are you really sure that the first one is dying? Why? What does he have? Is there a reason the meds have not worked in his case? So many people have turned around. I do not mean to pry,or to be insenstive to your suffering and that of your friend, but I think many of us hear this kind of thing and get terrified--there are still people dying with this disease that we have--and it would be of immense service to all of us to have as much of a context as possible in which to evaluate information of this sort.
Several reports documented KS in homosexual men who persistently had no evidence of HIV infection. These patients had an indolent and cutaneous form of the disease, which caused new lesions to appear every few years. Lesions occur most commonly on the extremities and genitalia but can occur anywhere on the skin.[1] These cases may indicate the presence of causal factors other than HIV that homosexual men may be exposed to because of their lifestyle.
Hellraiser, where is that information from? I'm not sure where that fits in the context of this discussion, but it sure is the "icing on the cake" of this growing series of surprises in this thread!
Now, every time I think that the situation could not get murkier, it goes and gets murkier. Every rule I thought existed seems to be turned upside down. Here we have someone with 50 T-cells who appears to be healthy, someone who had 1400 T-cells and was in hospital with an OI within three months, someone on the life-saving meds who is dying, and now KS showing up in people who do not have HIV--for I assume that "persistently had no evidence of HIV infection" means they tested negative repeatedly.
I'm sure that I am not the only one here who gets uncomfortable every time the word "lifestyle" gets used in the context of discussions of homosexuality. But what aspects of homosexual activity or lifestyle could cause KS independently of HIV?
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What's the point of using the quote function if we can't tell who you're quoting?
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I started not feeling well about a month after my last lab. Cause of it crashing is unknown. Ruled as a fluke..
Thanks again. I am interested in your story because I know of someone else with a similar experience. And what he has in common with you is three things: the extremely long period of non-progression, the extremely low VL, and the extreme suddenness of the crash, when it came. I wonder if they all go together somehow.
The lesson is that shit happens that's beyond your control. Embrace it.
I think we all learned that the day we found out we had HIV! But I think there might be a few more lessons. One--from RR's story and that of the other person I mentioned--is, if you do turn out to be a LTNP, and it's been about twenty years....be on guard.
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What's the point of using the quote function if we can't tell who you're quoting?
Miss P, every passage that I quoted was not only drawn from this very conversation but from the last few posts in it. Nobody who has been following this conversation would have any trouble remembering things that had just been said right before my reply to them.
But, just in case anyone does have such trouble, it seems that in every case where I used the quote function, I also addressed the quoted person, by name, either immediately before or immediately after the quote, as in
Etay, I am so sorry to hear about these friends.
and
Hellraiser, where is that information from?
and
RR,
Thank you again for sharing your experience with us.
and even
Miss P, every passage that I quoted...etc. etc.
right above.
So, in order to claim to be unable to "tell whom I'm quoting", one would have not only not to have been following the immediately preceding conversation, but also to overlook these consistent clues.
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That's terrible! Do you mean that 1400 was your last CD4 count before the crash? If so, how much time passed between it and the 52? Or was that the average over the 21 years?
Someone else I've met online had a similar case: an OI despite a tiny VL. I'm really confused by that.
Oh dear -- I wonder who Nestor was quoting here. Too bad he can't use the quote button.
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Thanks again. I am interested in your story because I know of someone else with a similar experience. And what he has in common with you is three things: the extremely long period of non-progression, the extremely low VL, and the extreme suddenness of the crash, when it came. I wonder if they all go together somehow.
ROFL, Nestor all I can say is it turned to AIDS pretty damn quick and I was to damn sick to care.
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Oh dear -- I wonder who Nestor was quoting here. Too bad he can't use the quote button.
Miss P, the statement I quoted was seperated from mine quoting it by exactly one post that was half a line long. The original quote from Rapid Rod, and my quoting of it, and the one intervening post, could all fit together in the same computer screen. Someone reading through the thread at a normal pace would read both the original statement and my response to it in about thirty seconds.
In other words, one would have to have the attention span of a moth or the short-term memory of an amoeba to have to "wonder whom Nestor was quoting there."
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In other words, one would have to have the attention span of a moth or the short-term memory of an amoeba to have to "wonder whom Nestor was quoting there."
Nothing some flagyl won't fix. ;)
MtD
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What's up with amoebas tonight?
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You got a reference for this, Margaret?
MtD
I'm not Margaret or Hellraiser, but will this do, Louise?:
Kien AE, Saltzman BR, Cao YZ, et al.: Kaposi's sarcoma in HIV-negative homosexual men. Lancet 335 (8682): 168-9, 1990. [PUBMED Abstract
It comes from the U.S. National Cancer Institute:
http://www.cancer.gov/cancertopics/pdq/treatment/kaposis/HealthProfessional/page2#Section_13 (http://www.cancer.gov/cancertopics/pdq/treatment/kaposis/HealthProfessional/page2#Section_13)
P.S. I forgot about this one:
http://www.aidsmap.com/en/news/999D3BD3-DA40-4442-B307-808F3AA9596D.asp (http://www.aidsmap.com/en/news/999D3BD3-DA40-4442-B307-808F3AA9596D.asp)
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In January of 2009 I had a cd4 of 184 with a cd4% of 26. I was into treatment, since the fall, and the doc was baffled? My numbers were increasing exponentially, or at least doubling up until that point. But here's the catch; I was on a trial and the lab for the trial was different from the in-house lab at the clinic. What the trial nurses found is that the trial lab was letting the specimens sit too long and the blood was dying off. So, alot of patients had this unusual drop in cd4 numbers and percentage. (There's a technical term for this but I'm still on my first cup of coffee) So now, am I considered having Aids because of a glitch by the lab? I know it's only a label but I'm wondering if that's the situation.
Any thoughts?
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Miss P, the statement I quoted was seperated from mine quoting it by exactly one post that was half a line long. The original quote from Rapid Rod, and my quoting of it, and the one intervening post, could all fit together in the same computer screen. Someone reading through the thread at a normal pace would read both the original statement and my response to it in about thirty seconds.
In other words, one would have to have the attention span of a moth or the short-term memory of an amoeba to have to "wonder whom Nestor was quoting there."
Nestor, some of us don't re-read entire threads ('reading through') every time we check back on them. Sometimes, a few days have lapsed between reading them. I also have a hard time following some of what you've quoted, and I have a pretty damned good attention span and a good memory... ADD and all! If you'll use the 'insert quote' link on the posts you want to add to your posts, you can edit out the 'irrelevant' information there. Seriously, it makes things easier to follow, that's all.
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... Someone reading through the thread at a normal pace would read both the original statement and my response to it in about thirty seconds.
In other words, one would have to have the attention span of a moth or the short-term memory of an amoeba to have to "wonder whom Nestor was quoting there."
Ditto David_NC.
And...my tolerance for the fact that the automatically quoted material is in even smaller print on a (lousy) dark purple background is only as a trade-off for easy reference to whence / whom / when the quote. If you are going to strip off all the useful parts, for pity's sake, make it BIG.
A
"BIG is GOOD" ;)
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In January of 2009 I had a cd4 of 184 with a cd4% of 26. I was into treatment, since the fall, and the doc was baffled? My numbers were increasing exponentially, or at least doubling up until that point. But here's the catch; I was on a trial and the lab for the trial was different from the in-house lab at the clinic. What the trial nurses found is that the trial lab was letting the specimens sit too long and the blood was dying off. So, alot of patients had this unusual drop in cd4 numbers and percentage. (There's a technical term for this but I'm still on my first cup of coffee) So now, am I considered having Aids because of a glitch by the lab? I know it's only a label but I'm wondering if that's the situation.
Any thoughts?
WOW. Interesting situation.... Considering the lack of much difference between the two states and the medical advantages of being classified as AIDS, I would say milk-it if possible. However, I don't know if a lab-technician's fuck-up would classify you as such.
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I'm not Margaret or Hellraiser, but will this do, Louise?:
Kien AE, Saltzman BR, Cao YZ, et al.: Kaposi's sarcoma in HIV-negative homosexual men. Lancet 335 (8682): 168-9, 1990. [PUBMED Abstract
It comes from the U.S. National Cancer Institute:
http://www.cancer.gov/cancertopics/pdq/treatment/kaposis/HealthProfessional/page2#Section_13 (http://www.cancer.gov/cancertopics/pdq/treatment/kaposis/HealthProfessional/page2#Section_13)
P.S. I forgot about this one:
http://www.aidsmap.com/en/news/999D3BD3-DA40-4442-B307-808F3AA9596D.asp (http://www.aidsmap.com/en/news/999D3BD3-DA40-4442-B307-808F3AA9596D.asp)
Proves nothing. KS is known to occur in non-homosexual HIV negative populations too. Notably older men of Mediterranean and Ashkenazi Jewish backgrounds.
MtD
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I prefer to believe the scientists and doctors who researched and wrote the two studies about gay men who do not correspond to the classic or HIV parameters, including Dr. Alvin Friedman-Kien--lead author of the "Lancet" study, the foremost KS expert in the U.S.--and the NIH's Cancer Institute. I'm also convinced by my Irish HIV-negative friend with KS and by anecdotal reports from my NYC HIV dermatologist, an associate of Dr. Friedman-Kien's at NYU Medical Center, who also reports an increase in HIV-negative gay men outside the classic parameters with KS in recent years.
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I prefer to believe the scientists and doctors who researched and wrote the two studies about gay men who do not correspond to the classic or HIV parameters, including Dr. Alvin Friedman-Kien--lead author of the "Lancet" study, the foremost KS expert in the U.S.--and the NIH's Cancer Institute. I'm also convinced by my Irish HIV-negative friend with KS and by anecdotal reports from my NYC HIV dermatologist, an associate of Dr. Friedman-Kien's at NYU Medical Center, who also reports an increase in HIV-negative gay men outside the classic parameters with KS in recent years.
Yeah well you believe whatever you want to believe Eddie. I would point out however that "the plural of anecdote is not data".
I think we might be discussing this in the wrong thread. Hellraiser had an attack of the vapours yesterday and misposted about KS in this thread.
MtD
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You're right...this is in the wrong thread. I was going to try to segue this over to the current "Kaposis [sic] sarcoma" thread, where I've already posted once today, but I haven't figured out a graceful way to do it. It's become quite jumbled together here now.
My last words here, however, must be to point out that I know full well the difference between data and anecdote. The two studies I referenced, from "The Lancet" and "AIDS," contain data. You asked Hellraiser for references, and I provided them. The anecdotal material I added simply as lagniappe.
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Thanks Blackvingbear. I would be interested to get a definitive answer from my doctor regarding this or hear some other thoughts regarding the situation.
Hugs,
Camms
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A laboratory mistake is an error, and any diagnosis based on that error is invalid.
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A laboratory mistake is an error, and any diagnosis based on that error is invalid.
True, but the scientific community seems to be willing to follow errors on this one - once you are diagnosed as having A.I.D.S., no matter how healthy you are or what condition your system is in, the diagnosis sticks.
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I talked about this with my doctor about a year ago. I have various plans of spending a lot of time backpacking, and even joining the Peace Corps where I would be in some remote place for two years. Would it be okay to go that long without having labs done? She said that most people decline slowly and gradually and that as my numbers hadn't even begun to decline, the chances of my descending into what used to be called "full-blown AIDS" in the next couple of years would be quite slim. Your case--and a couple of others like it--are a scary reminder of the exceptions to that rule.
Good luck getting into the peace corp with an HIV + status, up until 2008 the peace corp kicked volunteers out of the program when they found out they were positive, luckily the ACLU stepped in but there issue only dealt with people who found out they were positive once they started in the program. They may not deny your application on grounds of being HIV +, but they will find another way not to accept you. The peace corp doesn't want to be responsible for your medical care.
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True, but the scientific community seems to be willing to follow errors on this one - once you are diagnosed as having A.I.D.S., no matter how healthy you are or what condition your system is in, the diagnosis sticks.
That's not necessarily following an error. There have been a number of studies linking the risk of some conditions to the lowest CD4 count for a patient -- google "CD4 nadir". People who have had CD4 counts below 200 are more likely to have problems, even after the CD4 count recovers.
That's different from a lab error in measuring the CD4 count.
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People who have had CD4 counts below 200 are more likely to have problems, even after the CD4 count recovers.
Thanks for explaining that.
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That's not necessarily following an error. There have been a number of studies linking the risk of some conditions to the lowest CD4 count for a patient -- google "CD4 nadir". People who have had CD4 counts below 200 are more likely to have problems, even after the CD4 count recovers.
So, in a way, once you are sick you are forever viewed as sick even if you are healthy?
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What part of "more likely to have problems" don't you understand?
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What part of "more likely to have problems" don't you understand?
No, I understand... Guess I was simply in denial since I've had my levels that low & like to think I'm in "tip-top" perfect health now.
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I hope both you and I stay that way, but one never knows....
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So, in a way, once you are sick you are forever viewed as sick even if you are healthy?
No, I understand... Guess I was simply in denial since I've had my levels that low & like to think I'm in "tip-top" perfect health now.
Well ... it's hard to live in a probabalistic world, but it would appear that your risk of bad events if you are in tip top shape but recovered from AIDS is higher than if you are in tip top shape but always kept your tcell counts at higher levels.
It's still a lot better to have recovered than not. In fact if you can get to and keep a tcell count over 500, a recent European study suggests you will have almost as good life chances as the average member of the population. Now that is not as good as the life chances of the part of the population that is in the best shape, but it is certainly worth striving for.
So don't be in denial; denial is dangerous and you should be alert to the special risks you face as someone who had very low tcell counts. But don't give up trying to improve your health either. You have the ability to control a lot of your life outcomes if you choose to.
A
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It's still a lot better to have recovered than not. In fact if you can get to and keep a tcell count over 500, a recent European study suggests you will have almost as good life chances as the average member of the population. Now that is not as good as the life chances of the part of the population that is in the best shape, but it is certainly worth striving for.
That's what I'm striving for - a lil' more reassuring being above 500. Kinda funny - it took me being deathly-ill to start taking care of myself. I joked one time with the local AIDS resource director that "it took death to make me start living."
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I joked one time with the local AIDS resource director that "it took death to make me start living."
and the congregation answers back, "amen". ;)
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and the congregation answers back, "amen". ;)
Indeed.
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Well my clinic says once aids always aids . I say its just a bunch of symantic bullshit personally . SAME BUG either way . Anyway i just bought a screen printing machine and will be printing Tshirts that say HIV and PROUD on the front then on the back i will put a little slogan i made up right after i hit AIDS .
HIV
you cant see it
you cant tell it
and it CAN HAPPEN TO YOU
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Hope your printing machine has apostrophes: can't. ;D
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well im a bit more worried about the message than exact and proper english dude
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well im a bit more worried about the message than exact and proper english dude
Don't pay Edfu no mind Brian. That's just his way. :)
MtD
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Good luck getting into the peace corp with an HIV + status, up until 2008 the peace corp kicked volunteers out of the program when they found out they were positive, luckily the ACLU stepped in but there issue only dealt with people who found out they were positive once they started in the program. They may not deny your application on grounds of being HIV +, but they will find another way not to accept you. The peace corp doesn't want to be responsible for your medical care.
Alas, I know all about it. They still have HIV as one of the conditions for which they will not normally be able to place people. However I am still applying on the grounds that it can't hurt to try. Since I currently have no medical care for them to be responsible for, and since they now have had a couple of positive volunteers in the circumstances you describe and who have done rather well, I am thinking it may not be impossible after all.
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Sorry Nestor, like the military they're not going to let you in based on your positive status.
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I always say that I have AIDS.
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I always say that I have AIDS.
That's because you do have AIDS.
MtD
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That's because you do have AIDS.
MtD
Now now, you know that there's Quiet AIDS and then there's Fierce AIDS.
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I have WHATEVER for 25 years and I'm still alive. Call it what you want.
I call it life. Go me!
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Exactly, we may argue the semantics of the difference between HIV+ and AIDS but in the outside world HIV+ means AIDS to 99.9% of the people. We simply have to manage the perceptions to the best of our abilities.