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Author Topic: HIV or AIDS???? Encouraged and Scared.....Confused  (Read 6072 times)

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Offline ddva616

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HIV or AIDS???? Encouraged and Scared.....Confused
« on: August 15, 2011, 09:05:21 PM »
Tested Poz June 16
Started Meds on July 20 and 23
First follow up since the meds went well doctor was very encouraged at my response to the meds just about 2 and half weeks.

Finally found out my origional CD4 was 83 Viral Load 290000

After meds for 2 and half weeks..CD4 doubled to 160 and Viral Load info was not available due to lab not reporting.

The number 83 freaks me out?   According to HIV charts...that is a number that determines I have AIDS, not HIV....but the doctors have never said AIDS, only that I have tested positive for HIV antibodies and I have HIV

Do I have HIV or do I have AIDS?   I'm confused and the weirdness of all of this continues......  Anybody?  Words of wisdom?
« Last Edit: August 15, 2011, 09:20:32 PM by ddva616 »

Offline komnaes

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Re: HIV or AIDS???? Encouraged and Scared.....Confused
« Reply #1 on: August 15, 2011, 11:53:02 PM »
There have been two definitions developed by CDC:

"The older definition is to referring to AIDS using the diseases that were associated with it, for example, lymphadenopathy, the disease after which the discoverers of HIV originally named the virus.In 1993, the CDC expanded their definition of AIDS to include all HIV positive people with a CD4+ T cell count below 200 per µL of blood or 14% of all lymphocytes. The majority of new AIDS cases in developed countries use either this definition or the pre-1993 CDC definition. The AIDS diagnosis still stands even if, after treatment, the CD4+ T cell count rises to above 200 per µL of blood or other AIDS-defining illnesses are cured."

So technically, by definition, you do have an AIDS diagnosis.

However, with the advance of treatments, which you're on, this definition says very little about your overall health. The definitions were developed mainly for classification and in some cases to determine eligible of certain benefits.

As you find out more about AIDS/HIV you would find out that CD4 numbers do change, and provided that you haven't already developed other HIV-related health issues, you can expect to see your CD4 increases (as it already has) after treatment.

So unless there are other signs that will concern you and your doctor, an AIDS or HIV+ diagnosis doesn't mean a whole lot, except perhaps the stigma in many people's heads (that an AIDS diagnosis is somehow by definition more "serious"). The important thing is whether your health remains stable, and after the initial low CD4 number at the initial diagnosis (very common actually) will go back up.

Shaun
Aug 07 Diagnosed
Oct 07 CD4=446(19%) Feb 08 CD4=421(19%)
Jun 08 CD4=325(22%) Jul 08 CD4=301(18%)
Sep 08 CD4=257/VL=75,000 Oct 08 CD4=347(16%)
Dec 08 CD4=270(16%)
Jan 09 CD4=246(13%)/VL=10,000
Feb 09 CD4=233(15%)/VL=13,000
Started meds Sustiva/Epzicom
May 09 CD4=333(24%)/VL=650
Aug 09 CD4=346(24%)/VL=UD
Nov 09 CD4=437(26%)/VL=UD
Feb 10 CD4=471(31%)/VL=UD
June 10 CD4=517 (28%)/VL=UD
Sept 10 CD4=687 (31%)/VL=UD
Jan 11 CD4=557 (30%)/VL=UD
April 11 CD4=569 (32%)/VL=UD
Switched to Epizcom, Reyataz and Norvir
(Interrupted for 2 months with only Epizcom & Reyataz)
July 11 CD=520 (28%)/VL=UD
Oct 11 CD=771 (31%)/VL=UD(<30)
April 12 CD=609 (28%)/VL=UD(<20)
Aug 12 CD=657 (29%)/VL=UD(<20)
Dec 12 CD=532 (31%)/VL=UD(<20)
May 13 CD=567 (31%)/VL=UD(<20)
Jan 14 CD=521 (21%)/VL=UD(<50)

Offline buginme2

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Re: HIV or AIDS???? Encouraged and Scared.....Confused
« Reply #2 on: August 16, 2011, 12:49:00 AM »
You have AIDS

Read up on the HIV/AIDS lessons here.

http://www.aidsmeds.com/articles/WhatIsAIDS_4994.shtml

Offline spacebarsux

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Re: HIV or AIDS???? Encouraged and Scared.....Confused
« Reply #3 on: August 16, 2011, 05:05:17 AM »
Even if you have an AIDS diagnosis (i.e. under 200 CD4 and/or AIDS defining illnesses), it does not mean that you will remain there. With the meds your numbers will bounce back and then you will just be HIV+ like the rest of us.

Infected-  2005 or early 2006; Diagnosed- Jan 28th, 2011; Feb '11- CD4 754 @34%, VL- 39K; July '11- CD4 907@26%,  VL-81K; Feb '12- CD4 713 @31%, VL- 41K, Nov '12- CD4- 827@31%

Online leatherman

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Re: HIV or AIDS???? Encouraged and Scared.....Confused
« Reply #4 on: August 16, 2011, 09:36:05 AM »
So unless there are other signs that will concern you and your doctor, an AIDS or HIV+ diagnosis doesn't mean a whole lot, except perhaps the stigma in many people's heads
however, sometimes it can mean a great deal. having an AIDS diagnosis in America can mean better, quicker access to medical care and social services.

Even if you have an AIDS diagnosis (i.e. under 200 CD4 and/or AIDS defining illnesses), it does not mean that you will remain there. With the meds your numbers will bounce back and then you will just be HIV+ like the rest of us.
technically that's untrue.

It's possible to still be classified with AIDS even recovering to 500 tcells and UD, if you were once diagnosed with AIDS (which is nothing more than being HIV+ and meeting some other criteria). Whatever the highest HIV level you obtain using the CDC classifications (based upon your lowest cd4 count), you will always retain that status in your medical records and for tracking/counting purposes. However, whether you have A1 or C3 HIV, or the diagnosis "AIDS", it's all just labels - labels for medical personnel to use, labels for census/tracking purposes, labels for social service classifications.

See this interesting thread (What CDC HIV Category are you in?) for a discussion about how the CDC classifies HIV/AIDS; and this thread (From HIV to Aids back to HIV ) discussing why once diagnosed with AIDS that classification will remain as part of your medical record even after recovery.
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Offline spacebarsux

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Re: HIV or AIDS???? Encouraged and Scared.....Confused
« Reply #5 on: August 16, 2011, 09:44:48 AM »
technically that's untrue.

Yes, but I meant, leaving aside technicalities and appropriate labelling & jargon, from a health standpoint the OP should be alright once his CD4's climb out of the AIDSY levels.

The OP's current AIDS diagnosis is totally reversible from a medical perspective, regardless of misleading classifications from the Pre-HAART era.

« Last Edit: August 16, 2011, 09:53:57 AM by spacebarsux »
Infected-  2005 or early 2006; Diagnosed- Jan 28th, 2011; Feb '11- CD4 754 @34%, VL- 39K; July '11- CD4 907@26%,  VL-81K; Feb '12- CD4 713 @31%, VL- 41K, Nov '12- CD4- 827@31%

Offline Matty the Damned

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Re: HIV or AIDS???? Encouraged and Scared.....Confused
« Reply #6 on: August 16, 2011, 10:07:02 AM »
Yes, but I meant, leaving aside technicalities and appropriate labelling & jargon, from a health standpoint the OP should be alright once his CD4's climb out of the AIDSY levels.

The OP's current AIDS diagnosis is totally reversible from a medical perspective, regardless of misleading classifications from the Pre-HAART era.



Pay no attention to Mikey.

His experience of AIDS is restricted to the terms laid out in South Carolina and he can hardly be expected to appreciate that HIV science has moved on in the civilised world.

Don't get me wrong, he's a trooper. Standing outside teh State House in Columbia waving his red ribbon and flashing his Tammy Faye tattoo, he's a credit to all AIDS victims in the cracker states.

But when it comes to understanding the delicate nuances of HIV politics somewhere other than an Applebees --- Mikey may not be your man.

MtD

Online leatherman

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Re: HIV or AIDS???? Encouraged and Scared.....Confused
« Reply #7 on: August 16, 2011, 10:22:53 AM »
regardless of misleading classifications from the Pre-HAART era.
But when it comes to understanding the delicate nuances of HIV politics

http://hab.hrsa.gov/deliverhivaidscare/clinicalguide11/cg-205_hiv_classification.html

I would greatly appreciate a link to the official reference of the change in this classification system. I understand that this system has been simplified as "stage 1 - stage 4" for general purposes (http://www.who.int/hiv/pub/guidelines/HIVstaging150307.pdf); but I was unaware that the clinical classification that WHO and the CDC uses had been updated.
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Offline Ann

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Re: HIV or AIDS???? Encouraged and Scared.....Confused
« Reply #8 on: August 16, 2011, 11:07:18 AM »
Condoms are a girl's best friend

Condom and Lube Info  



"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline ddva616

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Re: HIV or AIDS???? Encouraged and Scared.....Confused
« Reply #9 on: August 16, 2011, 04:17:03 PM »
Thanks for the feedback.

However, let me also say....I am not sick.  Have never experienced any of the HIV or AIDS symptoms.  Doctor thinks infection was between 5 to 10 years based on my numbers.  Every thing is functioning as it should and if you looked at my general blood work...it's ALL NORMAL and within the ranges it is suppose to be.  Even the platelette count that dropped causing the concern to get the HIV test is points away from being in normal range.

Going back ...thinking about doctors appointments and surgeries I was under a very wrong assuption that HIV testing was done before surgery was standard.  You have to request it specifically.

Offline buginme2

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Re: HIV or AIDS???? Encouraged and Scared.....Confused
« Reply #10 on: August 16, 2011, 04:29:31 PM »
Thanks Ann, now I am going to be singing "you've got AIDS" all day.

ddva, regardless i you have been sick or not you still have AIDS.  AIDS = CD4<200

Yours was 83 when diagnosed.

At least thats what I was told at the Applebee's clinic.

Offline LM

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Re: HIV or AIDS???? Encouraged and Scared.....Confused
« Reply #11 on: August 16, 2011, 04:34:02 PM »
Couldn't resist. ;D

LOL! I love the Family Guy. Kinda evil, but too funny.

Offline spacebarsux

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Re: HIV or AIDS???? Encouraged and Scared.....Confused
« Reply #12 on: August 17, 2011, 04:56:44 AM »
Yeah Ann, I love family guy too. Now that you've removed Stewie from your avatar pic I might steal him.

http://www.youtube.com/watch?v=6szE_qmzavQ
Infected-  2005 or early 2006; Diagnosed- Jan 28th, 2011; Feb '11- CD4 754 @34%, VL- 39K; July '11- CD4 907@26%,  VL-81K; Feb '12- CD4 713 @31%, VL- 41K, Nov '12- CD4- 827@31%

Offline Since2005

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Re: HIV or AIDS???? Encouraged and Scared.....Confused
« Reply #13 on: August 21, 2011, 03:51:31 PM »
@Ann - Family guy stuff - Very funny!!

I don't understand why OP won't be classified as HIV+ once his number is up and over 200? He doesn't seem to have any illness at this time. If his CD4 number goes up, wouldn't he rahter be treated as HIV+ person? It really doesn't matter its just a label but still....Reading everyone's comments I have got various answers :)

Offline jkinatl2

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Re: HIV or AIDS???? Encouraged and Scared.....Confused
« Reply #14 on: August 21, 2011, 05:03:01 PM »
@Ann - Family guy stuff - Very funny!!

I don't understand why OP won't be classified as HIV+ once his number is up and over 200? He doesn't seem to have any illness at this time.

 If his CD4 number goes up, wouldn't he rather be treated as HIV+ person? It really doesn't matter its just a label but still....Reading everyone's comments I have got various answers :)

It's hard to know where to start answering that.

First off, statistics and government funding. In the US and in many other places, funding for HIV/AIDS services including free clinics, Ryan White monies, staffing/building HIV service and treatment programs, is based on the reported statistical incident of HIV/AIDS in a particular area.

If the definition of AIDS ever became fluid, as has been suggested, then the use of that number would be irrelevant. There would simply be no way to target the areas that need the most resources and funding, because the one identifier of great need would be removed.

Granted, this is not a perfect means of targeting, given the transient nature of people and the tendency to move to more urban areas where treatment is better and the stigma is lessened. But it's the way it's currently done.

This is true in the macro, allocation of federal funds and services, to the micro, services available to the patient. With an HIV diagnosis, there are quite a few services offered to someone needing assistance.

With an AIDS diagnosis, there are many, many more opportunities offered,  If the diagnosis was flexible, imagine getting your meds for free until you reached 200 t cells, then were suddenly bumped from the program because you were determined to have HIV, not AIDS. 

This legacy - based diagnosis allows people to become very healthy, and in many cases stay that way.

Another reason for respecting and keeping the AIDS diagnosis static is due of the nature of the illness itself. Yes, viral load can drop to undetectable with meds, and CD4 counts can rise to near normal (even normal) levels.

But the types of cells that are grown past an AIDS diagnosis have been proven to be nor nearly as robust as those you are supposed to keep all your life. The whole sub-set of so-called "memory" cells, those that have experienced and noted all past illnesses and know which pathogens to attack and how and why, have been mostly deccimated by the time an AIDS diagnosis occurs.

The cells which take their place are disproportionately so-called "helper" cells, those cells which can certainly attack pathogens, but have no history, no built in bank of transferred knowledge. It can take years of successful treatment to slowly build a real, sturdy, immune system again, despite the numbers of CD4 cells present.

In some cases that simply doesn't happen.

There is also evidence to indicate that the drop in CD4 count when meds are suspended is much more dramatic than the initial, organic drop in CD4 cell count before meds. Perhaps time and advancement in therapy (gene therapy?) will render this a non-issue.

As it stands, however, those of us on meds are being kept artificially healthy, with an immune system that has been fundamentally damaged. It is only within the last 15 years that we have even had a large enough survival rate to even track long-term immune recovery to see how that even happens.

So these reasons are more than enough, I think, to keep the AIDS diagnosis static and not flexible. Not only does it allow for proper statistical monitoring of the disease and the accompanying funding and services, but it allows that SAME monitoring, that same scrutiny and allocation of treatment to happen between each patient and her doctor.

PS: I can't get spell check to work, so there is that.
"Many people, especially in the gay community, turn to oral sex as a safer alternative in the age of AIDS. And with HIV rates rising, people need to remember that oral sex is safer sex. It's a reasonable alternative."

-Kimberly Page-Shafer, PhD, MPH

Welcome Thread

Offline ddva616

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Re: HIV or AIDS???? Encouraged and Scared.....Confused
« Reply #15 on: August 21, 2011, 05:26:12 PM »
Thanks for all the feed back.   let me repeat a few things about my diagnosis:  Especially as of recent

When I was diagnosed...I was told by 3 doctors you are HIV positive.  I have no text book symptoms of HIV or AIDS.  NONE.  The only way it was found was through a change in my platelette count, it had dropped.  I was put on medication immediately and within 14 days my CD4 doubled from 84 to 160.   I've also been seeing a hemotologist to monitor the protine and platelette level at last visit my over all blood work was that of a "Normal Non-Ifected Person"  all numbers were in the "normal zones" even white blood cells.

The doctors (2 of the ID Specialists) both said you have a very healthy immune system.  However due to the low numbers you have you did not just contract this, you have been carrying it for years.  Both have been practicing in this field for over 15 years.  So I would imagine they have seen HIV and AIDS from all ends of the spectrum.

With no side affects to the meds, and positive reactions to the meds, and no previous illness that could relate to HIV or AIDS, they all three have said...."you are going to be fine".  They have all three told me stories of horror and sucess, they have been very forth coming and direct with information and answering my questions.  They have committed to partnering with me through this and have complete confidence that the current drug treatments will take me to where I need to be.

I'm trying to remain in good mind set and keep positive thoughts.  As I continue to connect with other people with HIV I'm finding to be easier to deal with and accept.  Occassionally I start feeling sorry for myself and angry but it doesn't do anything for me but set me back.  So those that like to force IN YOUR FACE POSTS...don't do much good for any one.  It's not supportive for anyone. 

Thank you to many of you who have wrote supporting my concerns and fears and sharing your information.

Offline buginme2

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Re: HIV or AIDS???? Encouraged and Scared.....Confused
« Reply #16 on: August 21, 2011, 05:44:52 PM »
You asked a very simple question in your original post.  Do you have AIDS or HIV?  The very simple answer is AIDS.  That is from the definition of AIDS being below 200 cd4 cells ( I beleive you said you had 83 when diagnosed).  Its not IN YOUR FACE, it just is.  It doenst change the fact that your going to be ok and are healthy. 

You appear to have a problem with having AIDS verusus just being HIV positive.  I don't think it is as big a deal as maybe you think it is.  Its just a definition.  Having AIDS doesnt mean you cant recover or be healthy.  It just means your CD4 cells were below 200.

My only suggestion is read up and learn about your disease.  The lessons on this site are pretty good.  If your knowledgeable about HIV/AIDS and understand the disease maybe it wont bother you as much.

Offline drewm

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Re: HIV or AIDS???? Encouraged and Scared.....Confused
« Reply #17 on: August 21, 2011, 06:02:52 PM »
The diagnoses of AIDS is as described by these wonderful folks. I was dxd with AIDS just over a year ago. CD$ was 0008 and VL was 500,000. My numbers have since rebounded (on Atripla) to a respectable CD4 of 327 and a VL of undetectable. As my ID doc said, if he were seeing me for the first time, we would call it HIV and not AIDS.

Call it whatever you want, it matters in terms of getting assistance, disability and so on but the reality is HAART has turned the clock way back on this disease. It is what it is.
Diagnosed in  May of 2010 with teh AIDS.

PCP Pneumonia . CD4 8 . VL 500,000

ATRIPLA - VALTREX -  FLUOXETINE - FENOFIBRATE


Numbers consistent since 12/2010 - VL has remained undetectable and CD4 is anywhere from 275-325

Offline Since2005

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Re: HIV or AIDS???? Encouraged and Scared.....Confused
« Reply #18 on: August 21, 2011, 06:21:24 PM »
So those that like to force IN YOUR FACE POSTS...don't do much good for any one.  It's not supportive for anyone.

I exactly know what you meant by this. I remember when I first joined to this Forum, my very first night, I felt exactly the same. It actually was you buginme! I guess you are getting some idea how others take your comments as newcomers. I felt he did not have any respects about my feelings and did not know what I was saying. Don't worry ddva616, there are only few of them like him. Only thing we ask is please be reasonable when you say things to others. Please show some compassion! Hey, I have a lesson for you. May be, you should start like this: " Hey, I am sorry you are going through this/welcome to the forum.. and say what you need to say and end like this - " I hope it goes well for you at the end". Is that so hard for you to do?”  No one needs to follow any format but please be supportive. Instead of saying nothing except for “ you have got AIDS” .. “you have got AIDS” and “ you have AIDS” 3 times for God’s sake!!! May be it would be better go somewhere and learn some ‘Empathy class'  ( just a suggestion).

@OP.. Please hang in there. I am sure you will get through this. Regardless, you have got AIDS or HIV, you are healthy and when your CD4 numbers go up, you will even be healthier. Hang in there buddy!

Edited to add: @buginme2 I am sorry if I hurt your feelings in anyways. I am sure you have a good heart and you are here like everyone who wants to support. I just wanted to make sure you that you got the points on being compassionate.
« Last Edit: August 21, 2011, 07:32:05 PM by Since2005 »

Offline buginme2

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Re: HIV or AIDS???? Encouraged and Scared.....Confused
« Reply #19 on: August 21, 2011, 06:32:50 PM »
I suppose you could follow since's example and ignore your diagnosis for 6 years and they expect nursemaiding and handholding from a bunch of strangers.  The only advice I have offered the OP is for him to educate himself.  That is hardly inappropriate. 

Start your own thread Since if you have a bone to pick.  Don't hijack someone elses.

Offline jkinatl2

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Re: HIV or AIDS???? Encouraged and Scared.....Confused
« Reply #20 on: August 21, 2011, 07:05:22 PM »
Um, Since 2005? You quoted me in  your post, but it was something I absolutely didn't say.

Was this comment intended for me? I really don't understand.

Ah, you seem to have corrected your quote. Thanks for clarifying!
« Last Edit: August 21, 2011, 07:08:34 PM by jkinatl2 »
"Many people, especially in the gay community, turn to oral sex as a safer alternative in the age of AIDS. And with HIV rates rising, people need to remember that oral sex is safer sex. It's a reasonable alternative."

-Kimberly Page-Shafer, PhD, MPH

Welcome Thread

Offline ddva616

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Re: HIV or AIDS???? Encouraged and Scared.....Confused
« Reply #21 on: August 21, 2011, 08:09:31 PM »
I really do appreciate the feedback from everyone...even buginme.  If nothing else we will just say he likes to be direct.  However, since my doctors have the degrees and the 50 some odd years experience between the three of them, I think I will stick with their support and medical directions, so far seems to be working.

Anyway...Yes bug, I do have an issue with the whole thing.  Since it was totally unexpected and I wasn't sick, I had no preparation for it at all.   I'm not trying to deny it or justify it, just understand it because it's far bigger than anything I've ever delt with even diabetes.  And from what I've seen everyone experiences this in the same fashion when they are told.  I'm sure you were in the same boat in the beginning and like everyone else you had to learn it too.  Nothing wrong with a little handholding and nursemaiding as long as its true and factual.

Offline mecch

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Re: HIV or AIDS???? Encouraged and Scared.....Confused
« Reply #22 on: August 21, 2011, 10:56:43 PM »
Why don't you just decide yourself whether you want to have AIDS or be HIV+.

What is the difference to you?  You qualify for either "label", depending on different criteria, so just pick the one you prefer and keep taking your HAART.   



“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline mecch

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Re: HIV or AIDS???? Encouraged and Scared.....Confused
« Reply #23 on: August 22, 2011, 07:52:43 AM »
Oh, and just to make it clear to all readers, someone diagnosed with CD4 in the double digits and a suspected infection of many years is not "healthy", though he or she may feel "healthy" and have no sign of HIV.

We see this all the time in life, and in this FORUM:

Repeat.  "Feeling health" does not equal good health.   CD4 below 200 is a dangerous state of health.  One is sick.  

The OP Is NOT healthy as of this post.  

ddva616:   You ARE sick.  ("However, let me also say....I am not sick.")  I guess you know this, you are just playing with words.  We get it, you feel fine.  

Take the HAART.  What you are is on the mends.  Also, you do NOT know how long it will be until your CD4 is sufficient.

And since there has been no mention of antibiotics to protect your lungs, I put that one out there, too.

“From each, according to his ability; to each, according to his need” 1875 K Marx

 


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