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Author Topic: My ID Doc says CD% is BS  (Read 5298 times)

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Offline gonzo

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My ID Doc says CD% is BS
« on: June 03, 2009, 10:29:41 PM »
My ID Doc called to give me my lab results, when I asked him about my CD4%, he told me "I don't believe in that crap"
Needless to say I was a little surprised at his response, but I did get the answer I was looking for.
I'm debating if I should just keep track of them myself, or go looking for a new Doc, I do feel comfortable with this guy, but I don't agree with some of his views, and I let him know as much.




started Reyataz, Norvir & Truvada in Oct'08
CD4 255- _?_%--VL-2900-Nov '08
CD4 287--9%-Undetectable-Feb'09     
CD4 285-17%-Undetectable-May'09     
diagnosed in 1990, current Meds: Truvada/Reyataz/Norvir

Offline SoSadTooBad

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Re: My ID Doc says CD% is BS
« Reply #1 on: June 03, 2009, 11:21:54 PM »
My doctor also plays down the CD4% number.  He explained that, in his mind, it is a derived value, and not the most important metric to watch.  He always stresses the need to maintain an undetectible VL, and a resonably steady absolute CD4 count, but he tends to gloss over the CD4% on a consistent basis.
 

Offline aztecan

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Re: My ID Doc says CD% is BS
« Reply #2 on: June 03, 2009, 11:42:31 PM »
My doctor doesn't deal with the percentage either.  He relies on the absolute CD4 and viral load.

I'm not sure when the percentage became such a big deal. I hadn't heard of it until a few years ago.

I often think it confuses more people than it helps.

HUGS,

Mark

"May your life preach more loudly than your lips."
~ William Ellery Channing (Unitarian Minister)

Offline Robert

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Re: My ID Doc says CD% is BS
« Reply #3 on: June 04, 2009, 02:52:40 AM »

now I've always relied more on the  %'s than the real number.  The real numbers jumps all around but the % seems to have a constant increase.  I always thought my Dr did too but to be honest I can't recall how she really feels about them.  When I see her next month, I'll ask her.

..........

Offline Ann

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Re: My ID Doc says CD% is BS
« Reply #4 on: June 04, 2009, 05:12:14 AM »
My doc says the % is more important when a person is NOT on meds. Once on meds, it's the viral load that is important. The CD4% tends to be more stable and can help one decide if the absolute CD4 is really having a trend or if it's just jumping around a bit - and this will help determine whether or not it's time to start meds.

Ann
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 RapidRod

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Re: My ID Doc says CD% is BS
« Reply #5 on: June 04, 2009, 05:25:11 AM »
My ID doctor relies on both the percentages and viral load. It's brought up every visit. AIDS classification was changed to add anyone with a CD4% <14.

Offline minismom

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Re: My ID Doc says CD% is BS
« Reply #6 on: June 04, 2009, 07:42:11 AM »
This is very interesting indeed.  I've always thought *heard* that the % was more important because it is the more steady number.  This will be a very good discussion point for our July appointment.

Rod, you mean that with an u/d VL and decent CD4s, you can still be classified as AIDS if you have a % below 14%.  Or, was the % added to the list, ie: CD4's below 200, X amount of OIs, AND CD% below 14%.  This is also very interesting.

Huh.

Mum
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Offline bocker3

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Re: My ID Doc says CD% is BS
« Reply #7 on: June 04, 2009, 07:59:32 AM »
This is very interesting indeed.  I've always thought *heard* that the % was more important because it is the more steady number.  This will be a very good discussion point for our July appointment.

Rod, you mean that with an u/d VL and decent CD4s, you can still be classified as AIDS if you have a % below 14%.  Or, was the % added to the list, ie: CD4's below 200, X amount of OIs, AND CD% below 14%.  This is also very interesting.

Huh.

Mum

Mum,

I'm pretty sure that it is absoulte CD4 <200 OR CD4% <14% OR having any of the AIDS defining OIs that gives one the AIDS diagnosis.

Mike
Atripla - Started 12/05
Reyataz/Norvir - Added 6/06
Labs - Pre-Meds
Sep05 T=350/25% VL98,559
Nov05 288/18%  47,564
Current Labs
May2013 691/31% <20

Offline RapidRod

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Re: My ID Doc says CD% is BS
« Reply #8 on: June 04, 2009, 11:22:50 AM »
Here is easy to understand CD4% and why they are important.

http://aids.about.com/od/aidsfactsheets/a/cd4percent.htm

Offline mecch

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Re: My ID Doc says CD% is BS
« Reply #9 on: June 04, 2009, 01:03:54 PM »
Did you doctor actually say, quote, "I don't believe in that crap."?  Pretty disrespectful to his colleagues, or maybe he's/she's just a colorful down to earth type?  LOL
ďFrom each, according to his ability; to each, according to his needĒ 1875 K Marx

Offline gonzo

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Re: My ID Doc says CD% is BS
« Reply #10 on: June 04, 2009, 11:47:35 PM »
My understanding was that the % gave a clearer picture of ones immune system, but after reading these replies, I guess it's not a standard thing, and not all Doctors use it-guess I'll keep pops after all.

And mecch-my Doc said it exactly as I typed it, I'd say he was being colorful, I had to stifle a laugh when he said it over the phone. 
diagnosed in 1990, current Meds: Truvada/Reyataz/Norvir

Offline Miss Philicia

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Re: My ID Doc says CD% is BS
« Reply #11 on: June 05, 2009, 12:04:30 AM »
Depends where you are in your diagnosis.  Once size does not fit all.  Ask you doctor if he's prefer a cd4% of 8 or one of 44.  I think he's barking up the wrong tree.
"Iíve slept with enough men to know that Iím not gay"

Offline clsoca

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Re: My ID Doc says CD% is BS
« Reply #12 on: June 06, 2009, 02:30:52 PM »
My ID Doc is very funny.

He says the CD4 absolute is like a automobile's shock absorber (moving up and down depending on how bumping the road is) and the % is how smooth the ride is or in other words how good the shocks are working.

My ID Doc know that I like cars, so he explained it to me in words that made some since to me.

BTW, I have new numbers below.
10/07 Infected
11/07 Seroconversion
07/08 Tested Poz
07/08 VL 487  CD4 658  (No Meds)
10/08 VL 286  CD4 724  (No Meds)
01/24/09 VL 30,100   CD4 329 CD4 30% (No Meds)
02/06/09 VL 44,000   CD4 367 CD4 36%  Blood Work @ UCLA (No Meds)
02/06/09 VL 44,000   CD4 317 CD4 35% Blood Work @ USC (No Meds)
02/12/09 VL 52,000   CD4 297 CD4 29%
02/12/09  Started Atripla
04/01/09 VL 60  CD4 667   CD4 48%
06-05-09  VL UD CD4 427   CD4 39%

Offline Ann

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Re: My ID Doc says CD% is BS
« Reply #13 on: June 07, 2009, 04:50:05 AM »

He says the CD4 absolute is like a automobile's shock absorber (moving up and down depending on how bumping the road is) and the % is how smooth the ride is or in other words how good the shocks are working.


That's excellent! A really good way of putting it - even I can understand what he's saying and I'm not all that car savvy. :) And looking at your numbers, your shocks must be giving you a very good ride indeed! :D

Ann
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 shypoz

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Re: My ID Doc says CD% is BS
« Reply #14 on: June 07, 2009, 10:31:08 AM »
My ID Doc called to give me my lab results, when I asked him about my CD4%, he told me "I don't believe in that crap"

My doctor doesn't deal with the % either. CD4 count and viral load is the numbers he focuses on.

In my opinion, so long as you're comfortable with your doctor, as well as with advocating for yourself, you're good to go.
+++++++++

Matt's Timeline

08/28/08: HIV+
09/08/08: CD4 542 / VL 16,060
12/08/08: CD4 522 / VL 25,000
04/13/09: CD4 385 / VL 33,000 ~ Atripla prescription
04/16/09: Atripla started
07/20/09:

+++++++++

Offline clsoca

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Re: My ID Doc says CD% is BS
« Reply #15 on: June 07, 2009, 11:10:51 AM »
I too believe you should be comfortable with your HIV Doc. I also believe that you should not assume your HIV Doc is always a 100% correct. As Regan once said, "Trust but Verify."

My HIV Health Care is currently being managed by the Center for Clinical AIDS Research and Education at UCLA. They use the %.

Also I have been examined at the Ward 86 clinic in San Fransisco and they too use the %. 

These are two very large and progressive HIV clinics and they both use the % at each evaluation stage.
10/07 Infected
11/07 Seroconversion
07/08 Tested Poz
07/08 VL 487  CD4 658  (No Meds)
10/08 VL 286  CD4 724  (No Meds)
01/24/09 VL 30,100   CD4 329 CD4 30% (No Meds)
02/06/09 VL 44,000   CD4 367 CD4 36%  Blood Work @ UCLA (No Meds)
02/06/09 VL 44,000   CD4 317 CD4 35% Blood Work @ USC (No Meds)
02/12/09 VL 52,000   CD4 297 CD4 29%
02/12/09  Started Atripla
04/01/09 VL 60  CD4 667   CD4 48%
06-05-09  VL UD CD4 427   CD4 39%

Offline Inchlingblue

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Re: My ID Doc says CD% is BS
« Reply #16 on: June 23, 2009, 02:57:33 PM »
From  Dr. Gallant:

Posted on Jun 22, 2009

i was told it is more about cd percentage. that is more inmportant. am i correct


On Jun 22, 2009 Joel E. Gallant, M.D., M.P.H. replied:

No, that's not true. The CD4 count is more predictive of opportunistic infections and is the number used to determine the need for therapy. The CD4 percent just has the advantage of being less variable, so it's useful when you have discordant CD4 counts and need to find out whether there's really been a change.

LINK:

http://www.hopkins-hivguide.org/q_a/patient/recent_questions/cd4_s_up__viral_load_undetectable_but.html?contentInstanceId=487905&siteId=7151
« Last Edit: June 23, 2009, 06:48:46 PM by Inchlingblue »

Offline madbrain

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Re: My ID Doc says CD% is BS
« Reply #17 on: June 23, 2009, 06:42:09 PM »
Ann,

My doc says the % is more important when a person is NOT on meds. Once on meds, it's the viral load that is important. The CD4% tends to be more stable and can help one decide if the absolute CD4 is really having a trend or if it's just jumping around a bit - and this will help determine whether or not it's time to start meds.

With all due respect to your doc, I haven't really observed all that much stability in the CD4%, even though I'm not on meds and an HIV controller with a low VL. If you look at my numbers you can see that sometimes the CD4% once jumped from 31 to 40% within a 3 months interval - that's a 29% increase. Then after that from 40% to 32%. That's a 20% drop. Then later on from 34 to 27. Another 20% drop. Then later on from 30% to 38% . A 26% increase. Basically, I see relatively large variations from one test to another. But I see no trend in the direction of those variations.

If I look at my absolute CD4 count, I can't say that it is much more stable than the CD4%. One time it dropped from 749 to 553, a 26% drop. Later on, it went from 627 to 793, a 26% increase. These look like pretty big jumps too - at least to me.

And of course my variations in CD4 and CD4% don't always happen in the same direction at the same time - though sometimes they do.

I like my VL curve a lot better - consistently down the 15 months with no HAART.
« Last Edit: June 23, 2009, 06:44:18 PM by madbrain »

Offline AboutToStart

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Re: My ID Doc says CD% is BS
« Reply #18 on: June 23, 2009, 10:06:24 PM »
CD4 count change on a daily basis and even during the day and for Poz and Neg people, so that's why you need to look at the trend on an average basis to really analize it.. the % is a good indicator when the CD4 is behaving erratic (thou can be erratic by itself as your numbers show,..). I was pretty stable around 480-500 count for a couple of years then dropped to 280-300 over 6  months period.. % remained stable (20-22%) so doc was not so alarmed from the count drop as I was, thou he did recommend starting treatment. the overall trend, in my case, is headed down, so I think it is time for me to start.. My VL by the way is totally unreliable as it started to increase from 10-15K to 30-35K, but when the CD4 count dropped the VL actually came down to 20K... Doc says that in the lower range numbers (<55K) those changes (up or down) don;t matter much.. the virus is NOT supressed and hence the trend of the CD4 count is down.. (yours is pretty impressive, btw, with no meds - good luck with that :)

Offline elf

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Re: My ID Doc says CD% is BS
« Reply #19 on: June 25, 2009, 09:39:09 PM »
I asked my I.D. doctors about CD4%, and they said it's not as important as it used to be in the pre-HAART era. When I asked them if my 1st numbers  CD4: 353 13.2 % mean AIDS , they replied NO...My diagnosis is HIV A2 infection... (HIV A3, B3, C1, C2, C3 infection is classified as AIDS, but only for statistics...)
« Last Edit: June 25, 2009, 09:47:18 PM by elf »
Let's have a Kiki!

Offline Miss Philicia

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Re: My ID Doc says CD% is BS
« Reply #20 on: June 25, 2009, 10:42:52 PM »
According to the US CDC definition, you have AIDS if you are infected with HIV and present with one of the following:

A CD4+ T-cell count below 200 cells/Ķl (or a CD4+ T-cell percentage of total lymphocytes of less than 15%)
"Iíve slept with enough men to know that Iím not gay"

Offline newt

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Re: My ID Doc says CD% is BS
« Reply #21 on: June 26, 2009, 04:05:27 PM »
Erm, I am sure the CDC classification does not even define AIDS except as a gloss for historical/repoiting reaons, preferring rather the category A-C/1-3 system for severity of HIV infection, allowing CD4% and other immunological markers to = CD4 <200.

- matt
"The object is to be a well patient, not a good patient"

Offline skeebo1969

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Re: My ID Doc says CD% is BS
« Reply #22 on: July 08, 2009, 08:23:19 AM »


  My first HIV doc, who made me believe God is actually female, really kept an eye on my percentage when I was not on meds.  She was the best.....  and I'll never forget how she helped me through my initial shock after my diagnosis.

  My current doctor I have to pry my percentage  out of him, his thinking is more in line with some of the others doctors most seem to have here. when it comes to Cd4 and Vl being the deciding factor on how things are going with me.

I despise the song Love is in the Air, you should too.

Offline mpositive

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Re: My ID Doc says CD% is BS
« Reply #23 on: July 09, 2009, 08:42:47 PM »
Gonzo,

Your ID Doc sounds like mine here in NYC.  They may be related...lol.  I was infected 9months ago, since then, my VL has gone from 400k to just above 100k today.  My CD4 is sitting in the mid to upper 400s.  My % is at 17%.  I too am still not sure what to do.  He keeps telling me to relax and does not suggest I start meds yet.  Seems to want me to wait and see more where my numbers go......ugh....confused.

Offline wiser

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Re: My ID Doc says CD% is BS
« Reply #24 on: July 29, 2009, 08:17:30 AM »
My VL has remained undetectable since starting meds 5 years ago but my CD4 count hasn't budged much over the 220 mark during the same period. I've been very good general health wise over this time. My doc has used the CD4% I which has risen and been strong as an good indicator. I think he wants to give me some good numbers for psychological reasons. I think it is clear the good CD4 count is a great goal and indicator of immune system function. The CD4% has been helpful in my case to give a perspective on blips and these borderline CD4 readings.

Offline Rayray

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Re: My ID Doc says CD% is BS
« Reply #25 on: August 23, 2009, 05:10:26 AM »
My ID just told me the other day about the % and she said she gets a better picture from the % then the number b/c it depends on how long the blood sits in the lab before testing and the % is always steady when the numbers jump b/c of the time it takes to test.Only reason I asked was my cd4 number as u can see from my post keep going down but the % is steadly rising,she says its fine I'm undetectable and the percentage is climbing so I'm good,She is a really great doctor!
Tested feb 2007 neg
Seroconvert 07/2007
Diagnosed w/ Aids-PCP-Mac-Thrush-PN
09/07 CD4 71 Put on zidovudrine, Efarivnz, prednisone,bactrim ds,Z pak,Diflucan,Mepron
10/07 CD4 9 160,000,000  Stopped all pre meds for observations found current ID. started on Atripila for two weeks end due to sustiva allergy
11/07 CD4 4 VL-1600,000start Norvir-Truvada-Reytaz
12/07 CD4 83 VL-1600,000
02/08 CD4 488 VL- 4100
05/08 CD4 514 VL- 4200
07/08 CD4 434 VL- <400
10/08 Cd4 531 VL-Undetectable
10/16/2008 cd4 393 VL-undetectable
01/29/2009 cd4 419 VL-undetectable
04/28/2009 cd4 385 VL-undetectable
08/06/2009 cd4 358 VL-undetectable
12/14/2010 cd4 741 VL-undetectable

Offline WillyWump

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Re: My ID Doc says CD% is BS
« Reply #26 on: August 25, 2009, 06:42:13 PM »
Wow, very interesting to see a big difference in what each doctor looks at. My Doc goes primarily by %, she said it gives her the best view over time of how my immune sys is functioning and further when to start meds. For me, it wasnt unusual for my absolute numbers to bounce wildly each visit, all the while my % was taking an almost predictable steady decline until I started meds (see sig line)

-Will
POZ since '08

Last Labs-
6/3/14 CD4- 736, UD 34%
6/25/13 CD4- 1036, UD,
2/4/13, CD4 - 489, UD, 28%

Current Meds: Prezista/Epzicom/ Norvir
.

Offline newt

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Re: My ID Doc says CD% is BS
« Reply #27 on: August 25, 2009, 09:11:34 PM »
In truth both are useful, mostly when the CD% does not match an expected equivalent CD4%. 

CD4 varies on a daily/hourly basis and CD4% varies on a longer basis, but they both vary. With both, its the trend that counts.

+/- 50-100 on CD4 count (between 2 tests) and +/- 5% or so on CD4% is not important.There are many reasons why this should be so, including test error, with both its the trend that counts.

The CD4% depends on a the total number of white blood cells, since it is a % of that total. A high number of white blood cells will give a lower % (eg when you have an infection).

Recent Italian research suggests the absolute CD4 count is more predictive of the risk of opportunistc infections (this is posted elsewhere on the forum x 2).

CD4 count tends to be the measure used more to long term cohort studies on outcomes, so perhaps an advantage there.

The test panel wil return both, so why not get them both. A CD4 count of 200 should be = to a CD4% or around 13 or thereabouts, 400 = 25, or thereabouts.

- matt
"The object is to be a well patient, not a good patient"

Offline sam66

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Re: My ID Doc says CD% is BS
« Reply #28 on: August 26, 2009, 02:27:32 PM »


 even though I'm not on meds and an HIV controller with a low VL. If you look at my numbers you can see that sometimes the CD4% once jumped from 31 to 40% within a 3 months interval - that's a 29% increase. Then after that from 40% to 32%. That's a 20% drop.

    hi madbrain,
                          Can you explain what you mean by a HIV controller
december 2007 diagnosed +ve ,

Offline madbrain

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Re: My ID Doc says CD% is BS
« Reply #29 on: August 26, 2009, 07:25:08 PM »
    hi madbrain,
                          Can you explain what you mean by a HIV controller

Go to www.zephyrfoundation.org or www.hivcontrollers.org .

Offline sam66

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Re: My ID Doc says CD% is BS
« Reply #30 on: August 27, 2009, 05:31:08 AM »
   Quote from    http://www.hivcontrollers.org/hivcontrollers

    Such individuals, then called HIV long-term non-progressors, were defined by their lack of HIV-related symptoms and high CD4 T cell counts that remained stable for periods of 7 years or longer


   Looking at ur no's madbrain you been positive for 3 years. now considering many people might not find out that they are positive till 10 years after infection, many many people could have been in your position.

       having said that I hope eventually you are proved to be a Elite Controller, and I hope you can Stay without meds for a long time.

        I think to call yourself a HIV controller after 3 years of infection is somewhat jumping the gun.
december 2007 diagnosed +ve ,

Offline madbrain

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Re: My ID Doc says CD% is BS
« Reply #31 on: August 27, 2009, 01:37:17 PM »
Hi,

   Quote from    http://www.hivcontrollers.org/hivcontrollers

    Such individuals, then called HIV long-term non-progressors, were defined by their lack of HIV-related symptoms and high CD4 T cell counts that remained stable for periods of 7 years or longer


   Looking at ur no's madbrain you been positive for 3 years. now considering many people might not find out that they are positive till 10 years after infection, many many people could have been in your position.

       having said that I hope eventually you are proved to be a Elite Controller, and I hope you can Stay without meds for a long time.

        I think to call yourself a HIV controller after 3 years of infection is somewhat jumping the gun.

The definition you cited is for the old "long-term non progressor" category. At the time it was crafted, it was not possible to measure HIV viral load. The definitions for HIV controllers all include viral load - undetectable for elite controllers, or <2000 for viremic controllers. These definitions don't require a particular length of infection.

So far, the scientists in the studies that I'm enrolled in are calling me a viremic controller so far based on my CD4/VL history. Indeed, it's possible that others could be in the same situation as mine without knowing it. But most people don't precisely know their timeline for infection, and they wouldn't know their CD4/VL history. It's impossible to study people who are not even diagnosed.

 


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