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Author Topic: I have never had a grasp on the number game.  (Read 2868 times)

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Offline CraigMKE

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  • Posts: 35
I have never had a grasp on the number game.
« on: October 25, 2006, 05:45:58 PM »
Since Diagnosis I have never been above 250 (4.75 years).  I quit looking forward to my numbers rising sometime ago.

I have just changed from Combivir to Truvada in an effort to remove one more pill from my daily schedule (keep in mind, before my diagnosis, I wouldn't even take an aspirin for a headache, so ditching just one pill is a good thing).

Just had my labs done for the first time being on the new pill. (one month of using them)

Results:  White blood count dropped (Don't have the figures), Dr. does not seemed worried.
CD4 = 215 (no big deal, I didn't expect anything else)

Here is the big change.  CD% went from 12% to 17%, a 5% increase.

I have put my hopes and dreams on seeing the absolute number increase, I have really never cared about the %, and now.....5% increase in one month, the highest it has been since my diagnosis.

Now my question/quandary. Do I consider this a win?  Since the WBC went down, my CD4 in the low 200's, do I really care about the 5% increase in percentage?

My Dr. seems to think it is OK, I am staying on the Truvada for at least another 3 months.  I know you folks are not Dr.'s but to be quite frank, I have never really understood this numbers game, especially when I hear people jumping in CD4's when on HAART and I never really have.

Whatcha think?

Craig
« Last Edit: October 25, 2006, 05:50:29 PM by CraigMKE »

Offline Blixer

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  • Posts: 712
Re: I have never had a grasp on the number game.
« Reply #1 on: October 25, 2006, 07:22:22 PM »
Craig,
I'd say a 5% increase in CD4 percentage is pretty amazing even if there wasn't a great increase in absolute count.  Just my "non medical" opinion, but from what I know it sounds like a very positive thing.  And if your doctor isn't worried about the WBC then I'd say that is a good thing too. 
David
Diagnosed 1/9/06
8/27/2007 CD4 598, 29%, VL 58 (72 wks)
11/19/2007 CD4 609, 30%, VL < 50 (84 wks)
2/11/2008 CD4 439, 27%, VL <50 (96 wks)
5/5/2008 CD4 535, 28%, VL <50 (108 wks)
10/20/2008 CD4 680, 28%, VL <50 (132 wks)
Changed to Atripla in 2012
1/14/2013 CD4 855, 35%, VL <40

Offline allopathicholistic

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  • Posts: 3,258
Re: I have never had a grasp on the number game.
« Reply #2 on: October 26, 2006, 10:04:48 AM »
Congratulations on the 5% increase:) I just learned about percentage a few months ago and I still don't grasp the "T-Cell Ratio" thing! The Lessons section offers this on ratio: The T4 Count divided by the T8 Count. Since the T4 count is usually lower than normal in people living with HIV, and the T8 count is usually higher, the ratio is usually much lower than normal. A normal ratio is usually between 0.9 and 6.0. Like the T8 cell count, nobody really knows what this low number means. However, most experts agree that once anti-HIV therapy is started, an increase in the T-cell ratio (i.e. a rising T4 count and a falling T8 count) is a tell-tale sign that drug treatment is working.

Offline blondbeauty

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  • Posts: 1,784
Re: I have never had a grasp on the number game.
« Reply #3 on: October 26, 2006, 10:25:34 AM »
According to the medical reports I get every time I go to the hospital, they give more importance to the percentage to the total count.
In fact they print it this way: cd4 count: 25%=503 and they always talk about the percentage and I always have to ask about the cd4 count.
The only member in these forums approved by WINBA: World International Nail and Beauty Association.
Epstein Barr +; CMV +; Toxoplasmosis +; HIV-1 +.
Counts when starting treatment:
V.L.:80.200 copies. CD4: 25%=503
Started Sustiva-Truvada 14/August/2006
Last V.L.count (Oct 2013): Undetectable
Last CD4 count (OCT 2013): 52%= 933

Offline woodshere

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  • ain't no shame in my game
Re: I have never had a grasp on the number game.
« Reply #4 on: October 26, 2006, 03:07:14 PM »
Craig,

I am very similar to you.  since diagnosis in Mar and first labs in April my CD4 count has increased from 179 to 246, percentage 11.9 to 17.6 and VL from 55K to undetectable.  My Dr is very pleased and is expecting CD4 numbers in the 300's in the next 6mts. (Of course he can't be sure, but doesn't see any reason why they shouldn't).  I told him I was somewhat disappointed in my 3mth CD4 count of 191 because I had seen on line so many people that had huge increases.  His response was that there are many like you and I that have small increases and choose not to publize them.  Which is true in my case. I am a little embarassed that I didn't get a 200 or 300 jump so I list my CD4 count as improving.  I guess I should change that and take pride in the fact they increased and all other labs are in good shape!

Cheers,
Woods
"Let us give pubicity to HV/AIDS and not hide it..." "One of the things destroying people with AIDS is the stigma we attach to it."   Nelson Mandela

Offline poet

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  • Posts: 934
  • Poet living and working in Central Maine
Re: I have never had a grasp on the number game.
« Reply #5 on: October 26, 2006, 06:04:07 PM »
The numbers issue, speaking after 22 years of being hiv postive, can be confusing.  One New York doctor had the time to track my CD4/CD8 ratio over 10 years.  It remained basically constant while CD4's and 8's went up and down.  I recently pointed out to a new doctor on the Cape that my CD4's always went up in the summer, perhaps the sun, more exercise?  She said that she accepted this, but that some of her patients had the reverse experience because work here is so seasonal, some patients were stressing out from overworking and their numbers were showing it. 

My general guidance is to find where you want to be with the numbers, based on your reading, talking with your primary care provider, other hiv positive men/women you come across.  Your doctor may, for whatever reason, want to change medications.  Do you want to do so?  Are his/her concerns shared by you?  And even though you and the next person may be on the exact same drugs, the results that you and that person get may differ.  Win
Winthrop Smith has published three collections of poetry: Ghetto: From The First Five; The Weigh-In: Collected Poems; Skin Check: New York Poems.  The last was published in December 2006.  He has a work-in-progress underway titled Starting Positions.

Offline northernguy

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  • Posts: 1,347
Re: I have never had a grasp on the number game.
« Reply #6 on: October 27, 2006, 12:06:51 AM »
Interestingly, % don't seem to be a big thing here in Canada?  My docs never mentioned them!
Apr 28/06 cd4 600 vl 10,600 cd% 25
Nov 8/09 cd4 510 vl 49,5000 cd% 16
Jan 16/10 cd4 660 vl 54,309 cd% 16
Feb 17/10 Started Atripla
Mar 7/10 cd4 710 vl 1,076 cd% 21
Apr 18/10 cd4 920 vl 268 cd% 28
Jun 19/10 cd4 450 vl 60 cd% 25
Aug 15/10 cd4 680 vl 205 cd% 27
Apr 3/11 cd4 780 vl <40 cd% 30
Jul 17/11 cd4 960 vl <40 cd%33
April 15/12 cd4 1,010 vl <40 cd% 39
April 20/12 Switched to Viramune + Truvada
Aug 2/12 cd4 1040, vl <40, cd% 38
Oct 19 cd4 1,110 vl <40 cd% 41

Offline poet

  • Member
  • Posts: 934
  • Poet living and working in Central Maine
Re: I have never had a grasp on the number game.
« Reply #7 on: October 27, 2006, 05:36:44 AM »
Well down here, although we were all coached to aim for an undetectable viral load after decades of fixating on CD4/CD8 numbers and ratios, the experts have decided that an undetectable viral load isn't a tool which can help predict the future of hiv positive patients, so you may be lucky up there.  I would always encourage someone to listen to the numbers but not fixate on them as one might with financial numbers of stocks, when to buy or when to sell.  They are just tools.  Win
Winthrop Smith has published three collections of poetry: Ghetto: From The First Five; The Weigh-In: Collected Poems; Skin Check: New York Poems.  The last was published in December 2006.  He has a work-in-progress underway titled Starting Positions.

Offline blondbeauty

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  • Posts: 1,784
Re: I have never had a grasp on the number game.
« Reply #8 on: October 27, 2006, 12:33:56 PM »
As you can see in the report I enclose, Cd4% is considered more important than total cd4 count.

[attachment deleted by admin]
The only member in these forums approved by WINBA: World International Nail and Beauty Association.
Epstein Barr +; CMV +; Toxoplasmosis +; HIV-1 +.
Counts when starting treatment:
V.L.:80.200 copies. CD4: 25%=503
Started Sustiva-Truvada 14/August/2006
Last V.L.count (Oct 2013): Undetectable
Last CD4 count (OCT 2013): 52%= 933

Offline J.R.E.

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  • Posts: 7,099
  • Joined Dec-2003 Living positive, since 1985.
Re: I have never had a grasp on the number game.
« Reply #9 on: October 27, 2006, 01:26:37 PM »
Hello Craig.,

You've done well, with your increase in your percentages. Since starting on meds in October of 2003,with a t- count of 16, I have never had a t-cell count above 350. It is currently at 289. Those numbers have been going up and down at various times for me. Theres a lot I don't understand either Mike ! ??? I have had percentage as low as 3%, and as high as 11% over the past three years on meds.

Don't know if i will ever see t-cell counts in the 400 range, or a much higher percentage, but I remain hopeful !! I just try to do the best I can for myself everyday, and try to stay healthy, and do all those good healthy things :P  My doctor, besides being more concerned about the percentages, is very concerned about keeping the viral load undetectable !!

 I guess the question is,.... how you feeling overall ?  ....


Take care Craig--------Ray
Current Meds ; Viramune, Epzicom, 40mg of simvastatin, 12.5mg of Hydrochlorothiazide.
Metoprolol tartrate 25mg



http://forums.poz.com/index.php?topic=40802.0

http://forums.poz.com/index.php?topic=45159.0

http://forums.poz.com/index.php?topic=39722.msg495621;topicseen#msg495621

http://forums.poz.com/index.php?topic=46806.0

http://forums.poz.com/index.php?topic=39414.msg491701#msg491701


 In October of 2003, My t-cell count was 16, Viral load was over 500,000, Percentage at that time was 5%. I started my first  HAART regimen  on October 24th,03.

 As of 6/4/14,  t-cells are at 423, Viral load <40

 Current % is at 13% 

  
 62 years young.

Offline northernguy

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  • Posts: 1,347
Re: I have never had a grasp on the number game.
« Reply #10 on: October 31, 2006, 01:30:44 AM »
Interestingly, % don't seem to be a big thing here in Canada?  My docs never mentioned them!

Hmm, well maybe my doc didn't mention them because my July labs showed just 19% (found that out today) but the Cd4 was 800.  Latest results, hot off the presses were CD4 580 :( but % back up to 25%, so pretty much where I was last April.

Whta makes these #'s bounce around so much?  Doc said my body must have been fighting off something in July, but I only recall a sinus infection 5 weeks before...
Apr 28/06 cd4 600 vl 10,600 cd% 25
Nov 8/09 cd4 510 vl 49,5000 cd% 16
Jan 16/10 cd4 660 vl 54,309 cd% 16
Feb 17/10 Started Atripla
Mar 7/10 cd4 710 vl 1,076 cd% 21
Apr 18/10 cd4 920 vl 268 cd% 28
Jun 19/10 cd4 450 vl 60 cd% 25
Aug 15/10 cd4 680 vl 205 cd% 27
Apr 3/11 cd4 780 vl <40 cd% 30
Jul 17/11 cd4 960 vl <40 cd%33
April 15/12 cd4 1,010 vl <40 cd% 39
April 20/12 Switched to Viramune + Truvada
Aug 2/12 cd4 1040, vl <40, cd% 38
Oct 19 cd4 1,110 vl <40 cd% 41

Offline allopathicholistic

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  • Posts: 3,258
Re: I have never had a grasp on the number game.
« Reply #11 on: October 31, 2006, 05:28:53 PM »
Whta makes these #'s bounce around so much?  Doc said my body must have been fighting off something in July, but I only recall a sinus infection 5 weeks before...

great question .. i battled a cold-like something for just 8 days and lost 98 friggin CD4 cells in the process --it seemslike  a real bitch getting them 'back' too :-[

Offline Coffeechick88

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  • Posts: 431
Re: I have never had a grasp on the number game.
« Reply #12 on: October 31, 2006, 08:32:15 PM »
I'm a medical technologist so maybe I can help.  Absolute CD4 count like white count can flucuate for many reasons--even the time of day you take the test can influence it.  The CD4 percentage is more constant and needs to be looked at with the absolute CD4 count.  So if someone for example went from an absolute CD4 count of 350 to 289, but the CD4 percentage both times was constant, then you can say that the decrease was natural variation, not to be worried about.  So you really need the % to get the whole picture.  I also have to add that the tend over time is another thing to look at--to see whether it is just a "blip" or real.

In your case, it is very encouraging to see a 5% jump.  You won't always see a dramatic increase in the absolute CD4 count--for example some people start out on the low end of normal anyway before they were infected, so not everyone will achieve a high absolute number.  We are all different.  It could be with time, you will increase even more. 

« Last Edit: November 02, 2006, 12:07:03 PM by Coffeechick88 »
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Offline poet

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  • Poet living and working in Central Maine
Re: I have never had a grasp on the number game.
« Reply #13 on: November 01, 2006, 05:30:41 AM »
Thank you, Coffeechick, for reading the posts and then taking the time to post yourself.  It's great to get comments from the people who know in short, clear prose when we, as hiv positive patients/persons, are stuck about an issue.  Best, Win
Winthrop Smith has published three collections of poetry: Ghetto: From The First Five; The Weigh-In: Collected Poems; Skin Check: New York Poems.  The last was published in December 2006.  He has a work-in-progress underway titled Starting Positions.

Offline bobik

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    • My worksite
Re: I have never had a grasp on the number game.
« Reply #14 on: November 01, 2006, 09:44:22 AM »
Hi Craig,

I think yes, you win, this is good!


Northernguy: CD4's go up and down during the day, the percentage helps you to interpret the cd4 result.

Coen
Coen Honig at Facebook

Offline CraigMKE

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  • Posts: 35
Re: I have never had a grasp on the number game.
« Reply #15 on: November 01, 2006, 10:08:43 AM »
Thanks for your comments and answers to my questions.  I just get bumbed with these low numbers.

Anyone else start as low as I (CD4=7) and still not up to cd4=300 (after 4 1/2 years of HAART)

Craig

Offline poet

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  • Poet living and working in Central Maine
Re: I have never had a grasp on the number game.
« Reply #16 on: November 01, 2006, 04:22:44 PM »
Not to make light of real healthcare issues, let's compare it to someone investing in the stock market.  One person got in with Google at the beginning, despite everything that was said about the internet bubble being repeated, etc., etc.  Someone else went with ATT which, of course, was the standard for a solid investment.  We invest as we invest: it defines who we are.  Sometimes the stock goes up, sometimes the stock goes down.  But as with the stockmarket, if we look over the longterm I can wish us all positive, if you will, healthcare investments.  Yes, I would be concerned if my numbers dropped (CD4's) below 200 as long as I was on medications.  But that would also challenge me, as it did years ago when I pushed myself to finally start medications,  to try changing things as we would our investments and investment strategies.  Win
Winthrop Smith has published three collections of poetry: Ghetto: From The First Five; The Weigh-In: Collected Poems; Skin Check: New York Poems.  The last was published in December 2006.  He has a work-in-progress underway titled Starting Positions.

 


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