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MsStiletto
Newbie

Reged: 07/28/05
Posts: 5
Loc: Long Island, New York
Full-blown aids to hiv+
      #158345 - 08/08/05 04:26 PM

In Dec.2002 I was diagnosed with full-blown aids. I had thrush, neuropathy, CMV colitis & MAC. I had 18 Tcells & Viral load in the millions if thatís possible. I now have 346 Tcells & undetectable.
My question is, can I now be considered HIV+ or do I have full-blown aids & always will? Also, can the viral load be in the millions? I think thatís what they told me. I donít remember much from those first few days in the hospital.

Stiletto



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TwinsDad
Regular

Reged: 07/13/05
Posts: 27
Loc: USA
Re: Full-blown aids to hiv+ new
      #158346 - 08/08/05 04:45 PM

According to your medical records. You have AIDS. Just remember that the most important thing is how you feel. Numbers are just numbers. Let's say that you have 1000 t cells but you feel so depressed that you don't want to go out. These numbers won't tell you anything. Just live your life and have fun. Treatment is giving you more opportunity to live, just enjoy it.


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ang89
Regular

Reged: 12/24/04
Posts: 31
Re: Full-blown aids to hiv+ new
      #158351 - 08/08/05 06:05 PM

I have aids now, but as soon as I get to 200 cd4s in my head it will definitly be hiv. Its better to not label it and just enjoy the fact you feel good. I met a guy who has been pos for 29 yrs and he always calls it hiv.

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debtex
Legend

Reged: 03/21/05
Posts: 846
Re: Full-blown aids to hiv+ new
      #158365 - 08/08/05 09:47 PM

Hey MsStilleto,
unfortunately once your cd4 goes below 200 its a clinical diagnosis of aids, and you are technically now diagnosed with "aids". yes, you will also have hiv, but at one point (even if it NEVER goes below 200 again), you immune system has dropped enough to become "acquired". You don't have to say you have aids, technically we are ALL hiv positive. I hope all stays going well for you. just keep up the good work, and like everyone else said....its how you live your life and how you enjoy it that is the true measure.

Love and prayers
debbie

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MsStiletto
Newbie

Reged: 07/28/05
Posts: 5
Loc: Long Island, New York
Re: Full-blown aids to hiv+ new
      #158369 - 08/09/05 01:01 AM

Yea well I pretty much knew thatís what everyone was going to say. I guess it was a case of me hoping that if I asked enough times someone, somewhere would give me the answer I want to hear. It would go like this, ď Not only can you consider yourself not having full-blown aids anymore but you are also hiv-ÖHave a nice dayĒ!
I am happy with my numbers right now. It was a battle to get them where they are & stay there so I could get off all those prophylactics. And yes, why put a label on it?
But the depressionÖthatís the tough one. When it gets really bad I think of my aunt who was recently diagnosed with ALS. She has it really tough right now. She can hardly speak & just had a feeding tube put in, plus a host of other problems. She is getting herself ready for the inevitable. Just went to Israel for some spiritual comfort & spends most of her time with family & friends. Iím glad Iím not in her shoes. Oops, Iím beginning to babble.
Anyway thanks everyone for replying so quickly. I like it here.
J
Peace, Stiletto



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REXY
Unregistered

Re: Full-blown aids to hiv+ new
      #158372 - 08/09/05 03:03 AM

My understanding is that the reason the AMA still recognizes those who rebound to above 200T-cells as Aids and no converting back to HIV+ is because you have a low established baseline. Studies have shown that despite your rise in numbers, if your treatment were to fail, your numbers would decrease quite rapidly back to their lows. So if you started treatment at say 400 and treatment failed, this is probably where you would quickly retreat back to. You would still have lots of time to deteriorate or rebuild your numbers. If your numbers were 50 when you started treatment and your treatment failed, you would fall back into that range quickly, therefore having less time to find a new therapy.

Not to worry in your case though, immune therapies are coming brother and if you just hang in there and keep those numbers on the rise, stay on your meds and don't skip does, watch for any resistance trends, then your prognosis is well. I read a report about IL-2 and other T-cell boosting therapies to hit the mainstream soon. The t-cells created by IL-2 live three times as long as regular T-cells!

Personally, I think ANYONE living with HIV today, who is at this moment healthy is going to damn near live a full life-span given what I've read. There is about to be a wave of new meds, soon,..................So keep your chin up, live life, stay healthy and rest assured science is coming to the rescue for us all!

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shadow1
Legend

Reged: 12/06/00
Posts: 1209
Re: Full-blown aids to hiv+ new
      #158390 - 08/09/05 09:21 AM

The anon poster is right,
I had gone down to single digit T-cells before I started medications and we named them, now i am back to over 400 and undetectable. I consider myself HIV+ even though I had the designation of being an AIDS patient. For medical reasons the designation is maintained because they do not know how long the regiment you are on is going to work and how many options you still have. In my many years working with this disease I have seen many people go from there death bed to healthy productive people who are back to work and happy as a clam. We now have many new medications which are working much better than the ones we had even five years ago and more in the pipeline which have shown promise to those who the current medications are starting to fail on.
My advice is to enjoy your health and live some, maybe go back to school and get an advanced degree or start a business. Do what you want to do because life is too fragile to be stuck in worry and fear of what tomorrow brings, we can always look ahead to tomorrow and the future but we need to concentrate on the now and what will make us happy today and keep us healthy and here for tomorrow. I plan to be moving out of sunny So. Cal. next year to a new state, new job, a new tomorrow and a whole new walk of life, which I am taking my partner and my family with me. Wish me all the luck you can give because you need it for whatever you decide.


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stefsorg
Unregistered

Re: Full-blown aids to hiv+ new
      #158398 - 08/09/05 12:10 PM

Hi Stileto
I deal with depression too. Some would say why am i depressed. I have a wonderful husband, just graduated from college, and bought a cute little house. I have hiv and i hate knowing that. I have had minor symptoms so far so i haven't even begun to go through what you have. I too had no idea this was in my cards. I was preparing myself to be a carreer mom. I wanted it all. I haven't given up but sometimes i spend too much time doubting myself. Currently i am looking for a job, one with good benefits, i have ins but it's not the best. For me setting goals helps me acheive helps me brighten up my future. I will be starting med soon i have had btwn 300-400 t cells for almost two yrs. This terrifies me but i promised myself i will fight until i get the right regime for myself. I will not let this take over my life. I have to learn to live with it. Girl don't worry about the aids diagnosis, you have a disease, so do many others, do things that make you happy. This time it's about you. Be a little selfish.

Take care

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Monchhichi
Guru

Reged: 02/07/05
Posts: 248
Loc: Florida
Re: Full-blown aids to hiv+ new
      #158425 - 08/09/05 11:18 PM

Sometimes it kills me the difference between the 2. Let's say on Tuesday your counts are 352 and then on Thursday they are 153. So in 2 days time you have gone from HIV+ to AIDS. Then 2 days later your counts rise again and you are HIV+. Yes it is true that once diagnosed as AIDS you will always "have it". I see no point behind this other than a stigmatism that makes it harder on you. In 7 years with my husband he has flipped back and forth sooooo many times we lost count. For that reason I truly hate using the word AIDS. Do you ever notice that now if you say AIDS people are like WHOA!!! Yet if you say HIV+ they are like oh ok. It's stupid and irrelevant to what you as a person are going through. A nurse along time ago said that she refuses to call any of her patients AIDS afflicted, she call them all HIV+. I tend to adopt that same attitude. It makes things more easy to handle.

--------------------
Never forget: Life is too precious to take for granted.


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Anonymous
Unregistered

Re: Full-blown aids to hiv+ new
      #158457 - 08/10/05 03:52 PM

I'm so glad to know I'm not alone in dealing with this label of AIDS. Having HIV since "97 with no real problems, I took a bit too long of a "drug holiday" last year and let my T-cells drop to 82. After starting back on the same regimine I was on before, the T-cells shot back up to around 500 immediately and VL is almost undetectable again. BUT--I am having a tough time dealing with the fact that I am now and always will be "an AIDS case." I know it's just a label, but it is hard to deal with in the mind even though the body is doing much better.

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debtex
Legend

Reged: 03/21/05
Posts: 846
Re: Full-blown aids to hiv+ new
      #158460 - 08/10/05 04:22 PM

You never have to think of yourself that way. As far as ANYONE is concerned, even yourself....you are HIV positive. regardless of some medical terminology that dropped your tcells too far. you can always consider yourself as "having HIV".

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MsStiletto
Newbie

Reged: 07/28/05
Posts: 5
Loc: Long Island, New York
Re: Full-blown aids to hiv+ new
      #158469 - 08/10/05 10:02 PM

It really does help to realize that I am not so unique & others in similar situations have some of the same concerns and fears as I do. Thank you everyone for respondingÖwhether with words of encouragement or just to say you too have the same issues.

Now how did the words to that song in Rocky Horror go??????
Donít dream itÖ..be it? Anyone know if thatís right?

Peace,
Stiletto


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Anonymous
Unregistered

Re: Full-blown aids to hiv+ new
      #158487 - 08/11/05 07:49 AM

You can only go from an HIV+ diagnosis to AIDS. Ideally, once diagnosed with HIV, it would be crucial to maintain that diagnosis.

CDC guidelines state that any CD4 test falling below a count of 200 CD4's, constitutes a diagnosis of AIDS. Unfortunately, once you have received an AIDS diagnosis, it does not / will not ever change.

I have known many people with 900+ CD4 count who have an AIDS diagnosis. Most have undetectible viral loads, and look great. Once you are labeled with an AIDS diagnosis, it is impossible to change or remove it.

Fortunately, I have been healthy HIV positive for 19 years. I suppose it really doesn't matter whether you are diagnosed HIV positive, or AIDS. We are all in this fight together.

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Anonymous
Unregistered

Re: Full-blown aids to hiv+ new
      #158947 - 08/21/05 12:19 AM

The only resons there is a difference is for treatment purposes and insurance in the states. It is so that people can recieve continous coverage. In other countries such as canada you can only be diagnosed with aids if the CD4 count is below 200 and you have 2 OI. Once your levels recover you go back to having HIV as there insurance is different:) Don't let the terms effect you:)

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Anonymous
Unregistered

Re: Full-blown aids to hiv+ new
      #159784 - 09/09/05 08:25 PM

Please get on Via Viente. It is new, all natural and awesome. It is full of vitamins, minerals, antioxidants and anti-inflammatories. www.myviaoffice.com/auroramt25

Wellness is the way!

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