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Main Forums => Living With HIV => Topic started by: msjss on October 17, 2007, 06:32:28 am

Title: From HIV to AIDS
Post by: msjss on October 17, 2007, 06:32:28 am: Good morning,

I found out on yesterday, through the mail, that my HIV has now turned to AIDS and I'm not sure exactly what to do now. I've been referred to a Infectious Disease Specialist. This news brings me back to the very day I found out I was HIV positive. I really feel like I've just existed for 8 years. I have yet to tell my closets family and friends...only my immediate family knows. At this point I know I need help mentally because I feel like I'm about to explode. Any suggestions/advice would be appreciated.

God Bless.

msjss
Title: Re: From HIV to AIDS
Post by: emeraldize on October 17, 2007, 08:08:23 am: Good Morning,

You found out through the mail that you've progressed to an AIDS diagnosis? Who's been following you since your diagnosis eight years ago?

Where, may I ask, do you live that you are not already seeing an Infectious Diseases doctor?

Your post causes me to have more questions than I'll write here.

Pretend the whole forum is the Bomb Squad, only we don't want you to explode as you wrote of how you're feeling. Keep your wits as you'll need them to get yourself pointed in the right direction.

You've done a smart thing to ask for input, but I urge you to post in Living With HIV, too. You'll get a much faster and a wider array of input as you are limited to only women posters in this particular forum.

Em
Title: Re: From HIV to AIDS
Post by: msjss on October 17, 2007, 09:00:05 am: Hi EM,

Thanks for your response.

Yes, I received a referral to the ID Specialist, because I've progressed to an AIDS diagnosis through the mail. Which I'm not happy about.

Since my HIV diagnosis, I've been treated by my Internal Medicine physician. I currently live in South Florida, Miami to be exact, but I was never referred to an ID specialist because my VL has always been undetectable.

I'm really scared because I don't know if I should continue with the meds I've been taking (viramune and combivir). I don't want to choose just any ID. In looking in the network of ID specialist under my insurance plan there are some in my area.

Thanks again EM and I appreciate your response and any furture responses.

msjss
Title: From HIV to AIDS
Post by: msjss on October 17, 2007, 09:03:10 am: Good morning,

It was suggested to me to post this under "Living with HIV" as I'm trying to seek advice/suggestions.

I found out on yesterday, through the mail, that my HIV has now turned to AIDS and I'm not sure exactly what to do now. I've been referred to a Infectious Disease Specialist. This news brings me back to the very day I found out I was HIV positive. I really feel like I've just existed for 8 years. I have yet to tell my closets family and friends...only my immediate family knows. At this point I know I need help mentally because I feel like I'm about to explode. Any suggestions/advice would be appreciated.

God Bless.

msjss
Title: Re: From HIV to AIDS
Post by: xyahka on October 17, 2007, 09:37:49 am: Hi, so sorry you got the news. Still with it... you should see it optimistic eyes.

Off course it means we have to be more cautious with our health, but as some members have stated in this forums before... it is more a label than anything. If you are having health challenges you should monitor this closely with your Dr same with your numbers, but many people here have been up and down with their numbers what means that even if becoming aids (something we all are going to hear at one time) it does not mean your life will change dramatically if you are careful with your health.

i am sure others who have faced this too, will chime up with more suggestions. Relax.

Juan Carlos
Title: Re: From HIV to AIDS
Post by: aztecan on October 17, 2007, 09:55:43 am: Hey Msjss,

How is it you were notified by mail rather than a doctor? What predicated this turn of events? Also, was this diagnosis based on your CD4 level, the presense of an OI, or what?

I guess those are moot points, but I was curious.

OK, regardless of the wheres, whys and what fors of the past eight years, you are now dealing with an AIDS diagnosis and are unsure of what to do next.

You remind me of myself about 20 years ago. I was diagnosed in 1985 and I basically ignored it until 1992, when I saw a doc for the first time regarding my HIV.

If you will forgive me for offering rather blunt advice here, get off your can and act. Don't wait any longer.

First and foremost, see that ID specialist post haste. He/she will need to do some tests and evaluating to see where you are and what he/she should recommend you do next.

One thing you should talk to the doc about if your CD4s are below 200 are prophylaxes for opportunistic infections. If your numbers indicate it is time to start antiretrovirals, which you seem to indicate is the case, then the doc will probably want to talk ARV therapy.

I know all of this sounds frightening, but acting now and taking charge of your health now is far better than continuing to wait and then trying to recoup from a hospital stay and an OI.

If you are unfamiliar with HIV and what it entails, the lessons here are great places to start.

Also, don't worry about telling anyone about this for right now. Just focus on taking care of your health and doing what you need to in order to get that done.

Don't forget you have us for support. I know it may not seem like real support, but trust me, the people here are just incredible and have been a wonderful source of support and caring for me - and will be for you too.

It is time to act. I know, because I have been there and done that.

Don't forget to let us know what you find out from the doc and how things are going.

HUGS,

Mark
Title: Re: From HIV to AIDS
Post by: ubotts on October 17, 2007, 10:14:42 am: HI There..

I remember when I first was told I went from hiv to aids..
Honi,, really, its just a number..At first I freakedout, just like you...
It is disturbing news :( But after the initial shock, Its only a matter of numbers.

Anything under 200 tcells ..then they say..ummmm you now have Aids..

I have had aids when my tcell were under 200, then I went back up to being hiv ..
My numbers fluctuate constantly...

Just go by how your feeling...I hope i am making sense here.
When they told me your tcells are 103 now, and now you have full blown aids, I said
well i feel the same...(which was OK in my book)..3 month later when I went back for
results of my new blood work, I was 201 tells..

So in other words......Just by one t cell, iam back to being hiv..Ha that's crazy..
Honi,, its not about the numbers..not really, its more of a scientific thing with the doctors
as to how to monitor us...

Under 200 you got full blown aids..201 your back to being hiv...

So dont sweat it ..see what your doctor says, and he probably change your meds.

...You should have a panel test done to see what medicines are failing
you...I hope I help you out in some sort of way...Luv n concern ubotts. ;)
Title: Re: From HIV to AIDS
Post by: Ann on October 17, 2007, 10:54:54 am: Hi ms,

I've merged the two threaeds you started on the same subject and put the resulting thread in Living. It will be easier for you to check on your answers this way, and less confusing for those who answered you in one thread but not the other.

Without having more details, I don't have anything to add that the others haven't already said.

Ann
Title: Re: From HIV to AIDS
Post by: woodshere on October 17, 2007, 07:06:08 pm: Quote from: ubotts on October 17, 2007, 10:14:42 am

Under 200 you got full blown aids..201 your back to being hiv...

Actually, once you have an AIDS diagnosis it never changes, you always have AIDS. And that really shouldn't bother you because as someone said in an earlier post it really is just a number. When I found out I was positive I also found out that I had AIDS because by CD4 count was 179. Since I have insurance it is just a number. If I didn't have insurance than upon dropping below 200 CD4 count the ADA kicks in. At least that is the way I understand it.

For me personally I really feel no different now with a CD4 count of 350 than I did 20 months ago at 179, except now I don't have night sweats or swollen glands. I would be interested in knowing what your viral load is, as that is just as important if not more so in determining if your meds are working.

Hang in there,
Woods
Title: Re: From HIV to AIDS
Post by: J220 on October 17, 2007, 07:41:43 pm: I concur....not sure why your internal medicine doctor was treating you instead of an ID but at this point it's irrelevant. Firsh things first, you need to see an ID doctor at this point. ID doctors are much better prepared and are more EXPERIENCED in treating our condition, so that is the first thing you need to do. There are tons of ID doctors in the south florida area..choose one and see how it goes, and remember that if for some reason you don't like with him or her you can change. This is what I did here (I am in south florida also), when I didn't feel a connection with my first doctor, and was then able to find a really great doc. Best of luck and keep us posted. J.
Title: Re: From HIV to AIDS
Post by: LACboi on October 17, 2007, 09:27:47 pm: Quote from: msjss on October 17, 2007, 09:00:05 am

I'm really scared because I don't know if I should continue with the meds I've been taking (viramune and combivir). I don't want to choose just any ID. In looking in the network of ID specialist under my insurance plan there are some in my area.

Hello msjss, Well first of all not all Infectious Disease Doctors are HIV/AIDS doctors. You need to make sure that they specialize in HIV. HIV Specialist take care of all the HIV problems that go with HIV/AIDS. Plain old ID Docs will just take care of the infection only. You also mentioned that you diagnosis has changed from HIV to AIDS. A Internal Medicine Doctor should not Diagnose this unless he or she is a specialist. There might be something else that is causing you CD4 count to drop that is not HIV/AIDS related. Also what is you CD4 % this is the most accurate of the two CD4 numbers. The CD4 Count can go up and down from morning to night, meaning if you have you CD4 count drawn in the morning and then have a stressful day and the have you CD4 count drawn again the numbers will change, and they can change by double digits, but the CD4 % will not change if in the morning it's 20 it will also be 20 in the evening as well. The CD4 % should be above 15% give or take a 1 or 2 % depending on what HIV doc you ask. CD4 % below 15% is considered AIDS diagnosis normal is above 30%.

Take care
Jeremy...
Title: Re: From HIV to AIDS
Post by: whizzer on October 17, 2007, 09:41:14 pm: Infectious Diseases is a board-certified specialty, one of 24 designated by the American Board of Medical Specialties

HIV Specialist is not. There is no board certification process. Anyone can use this label.

Here's the list of medical specialties:

http://www.abms.org/Who_We_Help/Consumers/specialties.aspx (http://www.abms.org/Who_We_Help/Consumers/specialties.aspx)
Title: Re: From HIV to AIDS
Post by: Queen Tokelove on October 17, 2007, 09:58:44 pm: Well, what concerns me is that you are considering stopping your meds...Why? I know hearing that you have AIDS sounds like it's the end but it is not. You shouldn't even be considering this is my thoughts. What you should be considering is finding an ID doctor asap. I also agree with what Aztecan said as well. I would write more but at the moment I am a bit sadden by the loss of someone I considered a friend. I will get back with you.....
Title: Re: From HIV to AIDS
Post by: StrongGuy on October 17, 2007, 11:02:29 pm: I'd second what Ubotts said. And keep on top of your health don't let this scare you into submission - it's very important. You can bounce up with your #s, but it takes work and commitment and getting your head wrapped around it. You're still you and have the power to fight and get a handle on this, don't let a label take that away from you. I wish you the best.

:)
Title: Re: From HIV to AIDS
Post by: LACboi on October 18, 2007, 02:02:46 am: Quote from: whizzer on October 17, 2007, 09:41:14 pm
Infectious Diseases is a board-certified specialty, one of 24 designated by the American Board of Medical Specialties

HIV Specialist is not. There is no board certification process. Anyone can use this label.

HIV/ADS Specialist are board certified Internal Medicine Doctors that have completed 2 years fellowship in ID but then Specialize strictly in HIV/AIDS. HIV/AIDS specialist is a designation in California. Doctors certified in ID alone are not worth having if you are going to them for treatment of HIV/AIDS.

Having HIV is a full system virus affecting not just your blood but your GI, skin, Neuro, etc... Why have someone managing your virus in the blood who can manage the rest of the disease in the other parts of the body. If you just go to an ID Doctor and you tell him that you're having problems with your GI trach or your skin, he will send you two two other doctor for each of the other problems, why would you want that when an HIV/AIDS Specialist can cover all those and more.

Here a link you need to see to show you that HIV/AIDS is a Specialty.

http://www.idac.org/HIVcert.html (http://www.idac.org/HIVcert.html)

Jeremy...
Title: Re: From HIV to AIDS
Post by: emeraldize on October 18, 2007, 08:27:35 am: Out of respect to msjss, I must ask that we pull this thread back on track. I suggested she post in Living With to ensure she got a wider variety of responses not a denotative pissing match with regard to infectious diseases specializations. BTW, please don't suggest to posters as I did with msjss that they start a second thread on an issue. Contact a moderator and they will determine if, as in this case was so, the thread should be moved to another forum.

Please look at her first two posts at the top of the thread. It clearly states she is asking for input about how to handle the mental/emotional impact of this change in her status.

She also states she's been on meds, been recently referred to an ID doc, she's investigating who's in her insurance network, etc. She's on track there. She's been living with HIV for eight years. And, now feels she's moving into a new arena.

What would be helpful to msjss is sharing your experience of moving from an HIV status to an AIDS diagnosis. What she's also feeling, having only her immediate family in the loop, is being further distanced than what the eight years of hiding has already done, from her other family and friends.
If you have any experience in how you handled this transition or if you went to counseling, etc., I hope you will share it with her.

Please, no more derailment of this tender thread. Share your experiences, your thoughtful advice. Thank you.
Title: Re: From HIV to AIDS
Post by: David_CA on October 18, 2007, 12:03:46 pm: How to handle the HIV to AIDS diagnosis... it was no big deal to me. A month after getting out of the hospital (from PCP), which was also my first month on HAART, I asked my Dr. "so, do I now have AIDS?". His response makes a lot of sense to me. He told me:

"AIDS is a term from the older days of this disease. Most everybody that was HIV+ went to an AIDS diagnosis fairly quickly. Once that happened, things pretty much went downhill for them to the point that they eventually died. Back then, once people had an AIDS diagnosis, they almost never went back to merely an HIV+ status; they just didn't get better. Now, with HAART and all that we know about this virus, it's not uncommon get an AIDS diagnosis but then not fit the parameters for it anymore. The label still sticks, and that's mostly due to the damage that an immune system has had and / or to protect the individual in the case of disability, insurance, and so forth. I really don't like to use an AIDS description on somebody like you [me] now. I'd say that you [me] had AIDS while you were sick with pneumonia, but now that that's gone and the fact that your T-cells were never all that low, you [me] are just HIV+. That's not how the terminology works, though, so yes, technically, you have AIDS."

This was back in January. It bothered me a bit, but not too much, really. I felt good... so much better than I had in months. I think a large part of that was due to not having that nasty PCP anymore and also my body not having to fight such a high viral load.

Good luck with your Dr.'s and all. I'd certainly not stress too much about the HIV vs AIDS designations, as they don't really matter and the stress can't be good for you.

David
Title: Re: From HIV to AIDS
Post by: pozattitude on October 18, 2007, 12:45:49 pm: msjss,

Dr. Chan is a great doctor, he was my Id when I lived in So Florida. He is at Mount Sinai Hospital in Miami Beach.

Rich
Title: Re: From HIV to AIDS
Post by: msjss on October 18, 2007, 01:14:48 pm: Hi everyone,

Thanks so much for all your testimonies, advice, suggestions, recommendations and words of encouragement. I feel a lot better today and I thank God for AidsMeds.com because I wouldn't know where I'd be at this point.

I'll come back with an update once I get in to see the ID specialist.

msjss
Title: Re: From HIV to AIDS
Post by: BT65 on October 18, 2007, 07:06:43 pm: Msjss, I was diagnosed with AIDS back in 1994. I wasn't healthy by any means at the time. But I made it through it and here I am today. I hope you have support there i.e. friends, family etc. Do you see a good therapist?

And yes, do act on getting into the ID doctor as soon as possible. I can't believe your regular doctor advised you of having an AIDS diagnosis by letter
and not in person. That just sounds assinine to me. Just sayin'.
Title: Re: From HIV to AIDS
Post by: leatherman on October 18, 2007, 07:38:40 pm: Quote from: Bettytacy on October 18, 2007, 07:06:43 pm
Msjss, I was diagnosed with AIDS back in 1994. I wasn't healthy by any means at the time. But I made it through it and here I am today.

I wholeheartly agree with Betty. :D

I found out I was HIV+ christmas '92 and by Mar 96 I was in the hopital with 7 tcells and PCP, and became labeled with AIDS. Sure, it's a ~~little~~ lot scarey the first time someone actually says "you have aids". What it really means is that you need to take action and get the proper medical treatment. ;)

But that's all it has to be - just a label. It helps with qualifying for assistance programs, so on one hand it isn't such a bad label. If we're just going to go by the tcells after getting an OI, then I've been HIV poz a dozen or so times, and had AIDS a dozen or so times. ;D All-in-all though I've been dealing with the exact same condition, no matter what label "they" need to properly categorize me for potential benefits or assistance. ;)

Quote from: Bettytacy on October 18, 2007, 07:06:43 pm
I can't believe your regular doctor advised you of having an AIDS diagnosis by letter and not in person. That just sounds assinine to me. Just sayin'.
sometimes doctors have N.O. tack. When I picked up my partner one day (after getting an IV drip of something-or-other - it was a long time ago ;) ), the nurse at the desk told me the doctor wanted to speak with me. She dialed him up, put me on the phone. Without any preamble the doc blurted out "there's nothing else we can do for you partner. Do you want to admit him to the hospital to die, or should we get hospice care for you?"

Needless to say, that was the last day that he was MY doctor. ;)
Title: Re: From HIV to AIDS
Post by: chemistry001 on October 20, 2007, 05:44:10 am: Hi msjss

What people are saying about it is just a number is true, it can be hard to hear that you have AIDS but my doc said i had 3rd stage HIV, i did some research while laying in the hospital bed for 3 weeks with PCP and CD4 of 9 and found out that it was just another name for AIDS.

It just means you have to step your game up a notch and really look after yourself, the last year while having AIDS i have never felt so good. Ive never taken a day of sick from work while other teaching staff who are not poz have been off every other week, hell even my b'f who is neg has been off work and off sick more than me. Its a state of mind i think, i always said that i would never use my status as an excuse, and when i have felt slightly off ( and there have been times) I've found the energy form somewhere to keep going, and I'm sure its been to my benefit.

We are all different i know, but if you are finding it hard talk it over with someone, a friend, a councilor, people on here or just anyone that will listen, but never sit down and take it, keep going and make some small changes to give yourself the best chance at being the best you can.

Much Love
Paul xXx
Title: Re: From HIV to AIDS
Post by: DanielMark on October 20, 2007, 10:02:46 am: msjss,

I got an AIDS diagnosis three years ago. Now, I have rebounded from that state, and while somewhere on some chart I will always have "AIDS" I reject that label for myself. I refuse to live down to the expectations.

Be good to you. You have plenty of living left to do!

Daniel
June 2007 lab results: CD4 954 (28.8%)
VL still undetectable
Title: Re: From HIV to AIDS
Post by: Christine on October 21, 2007, 10:27:06 am: msjss,

Really, as everyone else has stated, it is just a number. Christine was officially labeled as having AIDS from the time she found out back in 93. Her CD4 count was always below 200 for the last 14 years, and in fact, they were below 50 for most of that time. She had a very resistant strain, and early on, the medications available were very limited. With today's medications a good doctor has numerous strategies to help boost your numbers and avoid resistance at the same time.

However, waste no time going to or finding an ID doctor. You have to take care of yourself now. Christine never would have done as well as she did with such low numbers if she hadn't taken great care of herself.

Good luck, and call that doctor now!

- Chris
Title: Re: From HIV to AIDS
Post by: mike in VT on October 21, 2007, 11:08:07 am: so many are right in that HIV to Aids is a matter of just a number. 200 you have HIV 199 you have Aids. Your number will bounce up and down from time to time. Your very next test result could put well back up to where you were. You on meds now and that is great. stay on they and talk to your new Doc about any changes they may want to make. Until then just remember you are still the same person you were before "the Letter". If your health is still the same and you don't feel any different than your not. To be afraid is something we all face. Face it with hope and courage. You are not alone. You are doing all the right things so keep up the good work.

Mike
Title: Re: From HIV to AIDS
Post by: Queen Tokelove on October 21, 2007, 01:31:27 pm: I agree with what everyone is saying too about it being a number. My cd4 was at 215 at the time I started my meds which was about a month or so ago. I haven't had blood work drawn yet, still waiting on it to get to me. But I am sure if my ID doc would've said I officially have AIDS, I wouldn't have taken it with a grain of salt right then. I guess no one likes hearing it.

Since scanning this thread, I hope you have found an ID doc and are getting the ball rolling.Just try to stay focused and be proactive about your health. Don't settle for anything and if you have questions for you doc, ask them. If the doctor acts like he/she is too busy to answer your questions, find another doc. Keep us informed of what's going on with you.