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AIDS forever???
Aug 27, 2009

I has Dx'd w/ Non-Hodgkin's Lymphoma (primary, CNS)(stage II) and went through the CHOP-Rituxan chemotherapy, and am in remission. Along w/ that Dx, came another Dx a week later: AIDS. I had a CD4 count of 250 at the time of Dx, now it's 400 (been on Atripla 2.5 yrs). I still have a lot of fatigue. My HIV specialist says I'm still an AIDS patient and always will be one, even if my CD4 reaches 1500. Huh? I thought AIDS was anyone under 200, or had a serious OI. I was a slow-progressor from an '83 series of transfusions. I'm over the stigma of AIDS (which i think affects non-gay pts worse, because we're not acculturated to it, really don't pre-consider we ever might get it or condition ourselves that we might get it, and really don't know people who have or had it). -So, I don't really care if I'm AIDS or HIV, but why does the medical estab. label AIDS patients for life? I think it would help people emotionally and psychologically if they were AIDS, to climb out of it w/ improved immune systems, with an HIV designation. Thank you!

Response from Dr. Frascino

Hello,

Non-Hodgkin's lymphoma in a person who is HIV infected (no matter what the CD4 count) is an AIDS-defining diagnosis. The diagnosis of AIDS does not change, even if the CD4 count significantly increases above 200. See below for a more detailed explanation. I would disagree that AIDS "affects non-gay patients worse, because they are not acculturated to it .. . . ." I can assure you based on my personal experience and also from caring for thousands of HIVers over the years a diagnosis of HIV/AIDS is always a shock no matter what your sexual orientation or experience level may be!

Dr. Bob

Chemo and CD-4 counts (HIV VERSUS AIDS DIAGNOSIS DEFINITION 2009) Jun 22, 2009

I am a HIV+ 37 year old male who is very healthy except for fighting KS in my colon and stomach. I have been undergoing Taxol treatment for my KS since Dec 08 until now June 1, 09. My oncologist and I decided to take a break till Mid-July because my CD-4 level has dropped to 150. My level was 450 when starting treatment but my viral load is still showing as undetectable. I wasn't concerned about it being 150 because the decline is totally due to the chemo treatments. I then started reading up on CD-4 levels and saw that less than 200 indicates AIDS. Now I am very concerned even though I am totally healthy otherwise. Should I hold off my chemo longer and build my system back up? My last CAT Scan showed that my colon walls are less thickened than my test in Dec 08 and also my colonoscopy showed me make great improvements as a result. Just scared and confused on how to proceed. Thanks for your help.

Response from Dr. Frascino

Hi,

You seem to be most worried about the diagnosis of AIDS because your CD4 count has dropped below 200. Actually you qualified for the AIDS diagnosis when your Kaposi's sarcoma (KS) was first diagnosed (even though your CD4 count was 450). KS is an AIDS-defining condition. See below for some information from the archives that discusses HIV versus AIDS. That said, I agree with your oncologist: It's wise to hold off on your chemotherapy until your CD4 count rebounds. I'm assuming you are on effective combination antiretroviral therapy that has driven your HIV plasma viral load to undetectable levels. If that's not the case, you should focus your attention on that now. Also, because your CD4 count is now below 200, you should be started on prophylaxis against Pneumocystis carinii pneumonia (PCP). Your oncologist should be working closely with your HIV specialist physician to coordinate a combined approach to both your HIV and KS. You can read much more about all these topics in the archives. Check them out!

Good luck.

Dr. Bob

Does 13% CD4 (< 14%) give me an AIDS diagnosis? (HIV VERSUS AIDS DIAGNOSIS DEFINITION 2009) May 24, 2009

This site has really been my best source of information and education and for that I am very grateful...Thank you! I've recently been diagnosed with HIV and I can't seem to get my head around the numbers and what they mean? From what I can tell, it was first CD4 count that was important, then it seemed as if my viral load mattered, now I see that you write that the CD4% is a more significant indicator.

My CD4 count is 243 and at 13% and my viral load at 4,560? I have seen two different doctors - one says I have an AIDS diagnosis (based on the CD4%); the other says I don't (based on the CD4 >200). Which is it? Does it matter? Do I no longer have AIDS if the numbers go back up?

By the way, they both do agree that I should get on HAART soon, and I plan to start meds within a week.

Response from Dr. Frascino

Hello,

A CD4% less than 14% is an AIDS-qualifying condition, even if the absolute CD4 count is still above 200. Consequently yes, you do have AIDS. Does it make any difference? No, not really. HIV disease comprises a spectrum from the early, often asymptomatic stage all the way to the end stage and death. The term "AIDS" was coined and developed by the Centers for Disease Control and Prevention (CDC) early in the course of the epidemic to help track the spread of the illness. "HIV positive" was not a reportable condition until recently; however, AIDS has been for quite some time. (See below.) Once an AIDS diagnosis is made the diagnosis is not reversible even if your counts improve on combination antiretroviral therapy. (See below.)

I agree with the decision to begin treatment without delay. There is an excellent chance you could see dramatic improvement in your counts on treatment.

Good luck. I'm here if you need me, OK?

Dr. Bob

AIDS vs HIV (HIV VERSUS AIDS DIAGNOSIS DEFINITION 2008) Oct 7, 2008

Dr Bob, First I would like to thank you for all the wonderful work you have done for HIV/AIDS. I enjoy your wit also. My question might sound stupid to you but I don't know if I still should be labeled as having "AIDS" or not. I have always hated lables anyway...I'm just a person (55+) who happens to be infected with HIV. I had PCP (Pneumocystis Carinii Pneumonia) five yrs ago and was my doctor said I had "AIDS" because of the PCP and a CD4 count below 200. I've been on many drugs but for the last 2 years I have been Atripla and Bactrium..and they are working fine. My recent blood tests ( 2 X yearly)all confirm that there is no trace of the virus (less then 50) and my CD4 count is almost 400. So do I now consider myself having "HIV" or am I still a person living with "advanced AIDS" (my doctors words - 6 months ago)? The HIV/AIDS term has always confused me... can you explain the difference? And please keep up the good work that you do...you have been a lifesaver for many of us... Thanks, An "oldie with "AIDS" (I guess!)

Response from Dr. Frascino

Hi,

First off, 55+ is not an "oldie" and can still be a "goodie" (as well as a "hottie!").

Next, I agree folks shouldn't get hung up on labels, particularly HIV versus AIDS. AIDS is a somewhat arbitrary definition that was created years ago to help us count cases. (See below.) The definition, as it now stands, is not reversible. Once someone qualifies for an AIDS diagnosis by acquiring an opportunistic infection (such as PCP) or by having their CD4 count fall to 200, the AIDS diagnosis remains, even if the opportunistic infection clears or the CD4 count rises above 200. AIDS or not, you are presently doing very well immunologically and virologically and, consequently, should remain optimistic about the future.

Good luck. Be well.

Dr. Bob

AIDS diagnosis (HIV VERSUS AIDS DIAGNOSIS DEFINITION) Mar 12, 2008

12 months ago I was diagnosed with AIDS as a result of an NHL diagnosis. My CD4 was 40 and VL was 750,000. After 12 mos, my CD4 is 274, VL is <40 (new testing has triggered and no longer undetectable) I'm on Atripla and take 100-200mg of CQ10 daily. I've also beat the NHL for now too. Is this a good/normal response rate on the CD4 side? Am I still considered to have an AIDS diagnosis? Does one ever go from AIDS to HIV? How high can I expect my CD4 to go?

Response from Dr. Frascino

Hello,

Congratulations on your improved health status. Regarding the AIDS diagnosis, that remains even if your CD4 count rises above the 200 mark. (See below.) As far as how much immune reconstitution (rise in CD4 count) you can expect on effective antiretroviral therapy, the answer is no one knows. There are far too many confounding variables to predict. These include variables related to the virus (viral strain, viral resistance, etc.) and variables related to the host (genetic susceptibility to certain viruses, immune integrity, concurrent opportunistic infections or malignancies, adherence to antiretroviral regimen, etc.). The important treatment goal is to keep your HIV plasma viral load suppressed to undetectable levels with antiretroviral therapy. This allows the greatest opportunity for immune reconstitution (rise in CD4 cells). At this point I believe you have just cause to be optimistic!

Good luck.

Dr. Bob

HIV vs AIDS??? (DEFINITION HIV VERSUS AIDS) Oct 27, 2007

BIG question. I have been getting conflicting info on this. What is the difference between HIV and AIDS? I thought (think) there is a huge difference between the two.

Response from Dr. Frascino

Hello,

No, actually there is not a huge difference. Everyone with AIDS (Acquire Immune Deficiency Syndrome) is HIV positive (Human Immunodeficiency Virus positive). AIDS is diagnosed when an HIV-positive person's immune system deteriorates to a specific point (CD4 count of 200 or CD4% of 14%) or when he/she acquires certain opportunistic infections or malignancies. I've addressed this topic numerous times before. (Check the archives!) I'll reprint some basic information from the archives below.

Dr. Bob

FULL BLOWN AIDS/please answer Jul 17, 2007

what does full blown aids mean?Is there a number that states that.I have 47 tcell and 713,000 copies of hiv virus in my body.Is that considered full blown???please answer.thanks

Response from Dr. Frascino

Hi,

HIV disease is termed AIDS when the immune system has deteriorated to a specific point. The definition of that specific point was made by the CDC for surveillance purposes (so that the number of cases could be determined). At the time the definition was created, HIV disease itself was not a "reportable" condition. Consequently we had difficulty tracking the epidemic or how quickly it was spreading. The CDC then came up with the definition of AIDS and made it a reportable condition. Cases were then reported to the CDC and counted for epidemiological purposes. Since then, new laws have been passed and now HIV alone is also a reportable condition.

An AIDS diagnosis is made if the CD4 count falls below 200 or if the CD4% is less than 14%. Also, if an HIV-positive person develops certain specific "opportunistic infections or malignancies," the diagnosis of AIDS is also confirmed. This list includes Pneumocystis pneumonia, Kaposi's sarcoma and cytomegalovirus, among others. You would have AIDS because your CD4 count is less than 200.

Finally, I should mention we don't use the term "full blown AIDS" anymore, mainly because there is no such thing as "partially blown AIDS". I'll reprint some information from the archives below.

Good luck.

Dr. Bob

t-cell count determines hiv or aids diagnosis? Jul 21, 2006

I remember my doctor at the time told me if my t-cell count dropped below 200, I would be considered to have Aids, but until then I am HIV+. Is this true? My t-cell count has dropped as low as 48, but is currently over 300. Can a person go from Hiv+ to having Aids to being considered Hiv+ again? I find people, being the public are more accepting of an hiv diagnosis rather than an aids diagnosis.

I know it's a silly question, but one I have thought about for some time now.

Thank you

Response from Dr. Frascino

Hi,

I'll repost below a question and response from the archives that addresses this concern. In brief, once a diagnosis of AIDS has been made, it is not rescinded, even if the CD4 count rebounds or the AIDS-defining opportunistic infection is completely cleared. I should also mention we no longer use the terminology "full-blown AIDS", as there is not such thing as "partially blown AIDS".

Your question is not silly. That 25 years into the pandemic "the public is more accepting of an HIV diagnosis than and AIDS diagnosis" is what's really silly! It shows we still have a long way to go in educating John Q. Public about HIV/AIDS. Unfortunately that education process is made all the more difficult by our current administration's backwards policy on sex education and HIV prevention together with the Republicans in Congress bowing to pressure from religious extremists. Let's hope this situation will be at least partially resolved with the upcoming mid-term elections.

Dr. Bob

AIDS OR NOT, THATS THE QUESTION Jun 12, 2005

Dr. Bob

On 5/24/05 the posted question about AIDS classification leaves me puzzled. In 1997 ZI was diagnosed with AIDS. My cd4 was 45 and I had several opportunistic infections. At that time I was given an full blown AIDS diagnosis. Four years later my cd4 was over 600, my viral load undetectable and my diagnosis was changed to HIV+. At that time my doctor was one of the tops in the field of AIDS research and treatment. I queried him about the change in diagnosis and he said CDC guideline had changed. Your answer on 5/24/05 leaves me wondering, who is right, who is wrong, and why the difference?

William

Response from Dr. Frascino

Hi William,

The CDC has not changed their HIV/AIDS diagnosis/classification criteria. So I guess that makes me right, him wrong and overall really not much difference as I explained in the response I previously posted. (Reprinted below.)

Dr. Bob

AIDS classification question Posted: May 24, 2005

Hi Dr. Bob,

I wrote to you regarding a question in the "Am I Infected?" forum.. and I'm not sure if this is the right place for my question -- but I always take consolation in the manner that you interact with people, so I'm hoping that you'd be able to answer this question -- which, arguably, could be placed elsewhere.

My friend's CD4 count, sadly, is in the high 90s. It's my understanding that this classifies him as having AIDS (I think the number is 200?) I believe he's been HIV+ for between 3-5 years. Is it possible, at this lowered state, that he would be able to increase this count/reduce the VL to a level that would not be considered AIDS? (I'm sorry for the crude phrasing of this question; but I'm not as educated in this topic as I'd like to be) It breaks my heart that I can't help him more -- his paticular strain has become resistant to his meds and he is going to start a sort of "trial" medication in the next week or so, which hopefully will help.

I guess my question is: is there a chance that with medication, lots of care and support, that he could recover from the low CD4/VL count? It's times like this I wish I had an M.D., too, and could do something medically instead of just emotionally. This message is quite somber, for which I apologize -- but this is my first friend who is HIV+, it's tough to be strong when I see him not doing so well -- and I just want to be there for him in any way possible.

Any advice or insight you have (despite perhaps the incorrect forum classification) would truly be appreciated.

Stay well, Dr. Bob. You're an inspiration.

-- TPF

Dr. Bob's response:

Hello TPF,

Anyone with either an AIDS indicator condition or a CD4 cell count of less than 200 has a diagnosis of full blown AIDS. However, the relevance of this diagnosis is more historical and epidemiological than clinical. HIV disease is a spectrum that goes from mild, asymptomatic disease to severe, symptomatic disease. There are folks with a full-blown AIDS diagnosis, who at the present time are feeling quite well, and likewise, there are people who do not "qualify" for the AIDS diagnosis, who are very symptomatic and ill. The CDC classification of full blown AIDS is used as a criterion for tracking the epidemic and allocating federal funds. Reporting requirements for HIV infection (not full blown AIDS) vary from state to state. However all cases of AIDS must, by law, be reported to the health department. Next, is there a chance that with the proper treatment your friend could significantly increase his CD4 count (above 200) and reduce his viral load to undetectable? Yes! If his trial medications can suppress HIV viral replication, his CD4 count will rebound. Working closely with a competent and compassionate HIV specialist is crucial. Sometimes getting a second opinion form another HIV specialist can be helpful, if things are not going well.

If your friend's CD4 count does increase above 200, will he still have a full-blown AIDS diagnosis? Yes, once this diagnosis of AIDS is made, it is not negated by subsequent developments, even if treatment produces a remarkable degree of immune reconstitution. However, do remember it's your friend's health and immune status that are important, not a "diagnosis" made primarily for surveillance purposes.

Finally, I should point out: don't wish to be an M.D. to help your friend. Chances are he'll have more than enough doctors involved in his care. What most HIV folks need are friends. A true friend is often more potent, soothing and healing than any medical intervention.

Good luck to both you and your friend.

Dr. Bob


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