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Author Topic: cd4 numbers all over the place. depressing  (Read 1641 times)

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Offline webontheweb

  • Member
  • Posts: 110
cd4 numbers all over the place. depressing
« on: November 06, 2008, 03:33:30 PM »
I have been on Atripla for 14 months now.  I started out with a VL of 144000 and cd4 of 134
since then, my VL has under 45 since first month, but my cd4 count has gone 178, 177, 202, 178, 222,198.  NOW- everybody says, Oh don't worry about that, the numbers go up and down all the time, blah blah blah.
Well I DO worry.  I do everything I can to maintain and build my health back up and I could tell when the most recent test because my energy level is down again.  It is hard to stay upbeat and positive about life with this looming in the back of my mind all day long.
I have never missed a dose, take my bactrim like a good little soldier, rest, eat right and all that crap and still.  ..  ...
So what's going on with me?  I do not really trust the Doctors about this one issue.  Other than that, they are great.
I am 46 year old Diagnosed in Aug of '07

Give me something to hang onto, guys, PLEASE!
 Please don't call out the Big Mary suicide line,  I'm not going to off myself,  just feeling mighty blue the last couple of weeks.
Cheers boys and girls and those in=between.
Love ya.
E

Offline emeraldize

  • Member
  • Posts: 3,366
Re: cd4 numbers all over the place. depressing
« Reply #1 on: November 06, 2008, 03:51:41 PM »
NOW- everybody says, Oh don't worry about that, the numbers go up and down all the time, blah blah blah. Well I DO worry.

Well, what "everybody" is saying in this instance is true. It's your choice to worry. Were I you, I'd spend that mental energy and hand-wringing time reading about numbers, percentages, shifts in numbers and what doctors look for in terms of signicant numbers and trends. Give yourself something to hang onto----read some medical articles, books, etc. I choose to trust my docs. I let them worry about packing this knowledge into their heads so when I come up with a question or two per year, they've got the answer.

Here's an excerpt from a piece by the AETC Aids Resource which you may find helpful to have.-------------------------

The CD4 count typically declines over time as HIV infection progresses. Many other factors may affect CD4 counts more transiently, including illness, vaccination, diurnal variation, laboratory error, and inter-laboratory differences (see " Patient Education " below). Because fluctuations in the absolute CD4 count are likely, definitive conclusions should rarely be drawn from a single CD4 value. When results are inconsistent with previous trends, tests should be repeated, and treatment decisions usually should be based on 2 or more similar values. The CD4 percentage sometimes is used in coordination with the absolute value to assess the significance of changes in the absolute CD4 count. The absolute CD4 count can fluctuate as overall lymphocyte counts vary, but the CD4 percentage often remains stable during insignificant CD4 fluctuations. CD8 cell (or cytotoxic T cell) counts do not appear to predict clinical outcomes.

As untreated HIV infection progresses, the CD4 count declines by approximately 4% per year. In response to successful ART, the CD4 count typically increases by >50 cells/ÁL within weeks after viral suppression, and then increases by 50-100 cells/ÁL per year thereafter until a threshold is reached. In some patients, CD4 counts may not increase this quickly or steadily, even with durable viral load suppression.

-------------------------------------------------------------------------

Another alternative would be to pick the person on this site whom you would be most likely to believe...Peter? Tim? David? Ann? Anniebc? Dachschund? Moffie? and send them a PM with your numbers-related concerns.
« Last Edit: November 06, 2008, 03:57:09 PM by emeraldize »

Offline webontheweb

  • Member
  • Posts: 110
Re: cd4 numbers all over the place. depressing
« Reply #2 on: November 06, 2008, 04:12:07 PM »
thanks for the great post-  to start- I am not now nor have i ever been a "hand wringer"  LOL  It's just a blue time for me and I am feeling down about this.
Neither my partner or I have a single friend who is POZ-  truth be told, we really do not have one single gay friend!  It just kind of ended up that way-  I had a bunch a wonderful friends when I was younger but they are all dead now, and I don't feel like making new friends.  Now before you get your panties in a bunch, I DO KNOW PEOPLE, just not any "different" people.  When we go out there are lots of guys who say hey and we are friendly enough, but yes it is true-  I do not have one gay friend!  So there.
Are we past that now?  okay! phew!!!
One thing that I am looking forward to is the AIDS QUILT coming to SYRACUSE NEW YORK in December.   I have volunteered to work it.  I have not seen the quilt since 1988 or 1989 when I lived in Hawaii.  I have a deeper connection to it now, I think.
Thanks for the post, buddy, I appreciate it.
Cheers,
E

Online leatherman

  • Member
  • Posts: 6,331
  • Google and HIV meds are Your Friends
Re: cd4 numbers all over the place. depressing
« Reply #3 on: November 06, 2008, 05:37:10 PM »
I have never missed a dose, take my bactrim like a good little soldier, rest, eat right and all that crap and still.  ..  ...
So what's going on with me?  I do not really trust the Doctors about this one issue.  Other than that, they are great.
I am 46 year old Diagnosed in Aug of '07

I am 46 (and a half), diagnosed in Dec 92, hospitalized twice with OIs back in 96 and 98. First off, it took me ten yrs to ever reach my first undetectable but that was because of side effects, lots of different meds, and some serious non-compliance (puking every day just wasn't a good quality of life)

I take my bactrim regularly too.  ;) I've been doing that for a whole decade now because my average tcell count has been about 167. Once, a few years back, it actually spiked clear up to 311. That was a happy day.  ;D but back down they went by the next labs.  :-X The good news is the 5-yr average is up to 235.

here's what I've learned. Having a low VL is the most important thing to worry about. You don't need that bug running around wreaking havoc in your system. Sure after a couple of bouts of pnuemonia I turned into a germ-ophobic for a while because my t's were so low (I had 4 when I had PCP); but one day a few yrs back I realized that my little 125 tcells had been keeping me pretty healthy and alive, so maybe having more wasn't so darned important.

I'm not saying don't be a little "leery". Stay away from sick people, eat well, exercise, wash and sanitize your hands. With a low immune system, you have to try to help it out.

Now the other way to look at this though is that your system has taken a big beating, you're on meds and it's knocking out the HIV. Now you're body is recovering. Sometimes recovery takes a long time and sometimes recovery goes very slowly. Keep some positive thoughts that over the next year your t's rebound even further.

Neither my partner or I have a single friend who is POZ-  truth be told, we really do not have one single gay friend!  It just kind of ended up that way-  I had a bunch a wonderful friends when I was younger but they are all dead now, and I don't feel like making new friends.  Now before you get your panties in a bunch, I DO KNOW PEOPLE, just not any "different" people.  When we go out there are lots of guys who say hey and we are friendly enough, but yes it is true-  I do not have one gay friend!
don't feel bad ;) same story here. Got plenty of friends and lots of support  :-* ; but all of them are straight. LOL It's not so bad though, they've all really been there for me through all the tough times (16 yrs of living with AIDS and losing two long-term partners).
leatherman (aka mIkIE)


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

Offline Moffie65

  • Member
  • Posts: 1,755
  • Living POZ since 1983
Re: cd4 numbers all over the place. depressing
« Reply #4 on: November 06, 2008, 05:48:47 PM »
Talk about paralell universes!  I live in Southeast Arizona, with Tombstone across the valley 17 miles.  There are loads of gay people here, but we just don't spend much time away from our home without being together and enjoying our solitude.  

Anyway, back to the original thought.

First off, we are all different, and each one of us come to this disease with our immune system as it is, and respond to treatment in our own speed.  That being said, we can struggle sometimes for years to rebuild our immune system, because it is so dependent on so many factors, some known and some unknown.  What is really known is that stress, the kind we manufacture on a fairly regular basis just because of things like this, will in the end win out over eating right, sleeping right and all the other stuff we all accept to keep us as healthy as possible.  I myself struggled for five years to rebuild my immune system, because when we go below 200 CD4s, it seems to make our recovery much more protracted on average.  Be that as it may, you really need to snuggle up by the fireplace, watch the beautiful snow and let your body heal, and rebuild.  This doesn't include obsessing about how slow our CD4s are recovering.  I do absolutely know where you are now, and how defeated you feel sometimes; many of us have walked that path, but for real, try to let it go and focus on recreating your life with HIV on board.  I promise it will get easier, and I promise that you will learn to live with all the shit we live with daily, but you have to give yourself a break and not be too focused on this little bugger.  

You'll do fine, just be easy on yourself.  When things get a bit out of control, just come here and share and someone of us who know how it is will chime in and help where we can.  It truly is a learning experience and a really full one at that, so in a few years you'll be wondering why you were so worried.  :)

Thanks
The Bible contains 6 admonishments to homosexuals,
and 362 to heterosexuals.
This doesn't mean that God doesn't love heterosexuals,
It's just that they need more supervision.
Lynn Lavne

Offline emeraldize

  • Member
  • Posts: 3,366
Re: cd4 numbers all over the place. depressing
« Reply #5 on: November 06, 2008, 06:01:57 PM »
thanks for the great post-  to start- I am not now nor have i ever been a "hand wringer"  LOL

Hey, you're welcome!! You've gotten good replies from the guys. I'm glad you can laugh at my characterization of your worry as wringing. That's a terrific sign. In the last five years, laughter has never been more important to me. It doesn't come along often enough. Do you like Chris Rock? That's the kind of stuff I'm talkin' 'bout. I just read an Obama article this week in Rolling Stone and OMG!! HE LIKES CHRIS ROCK, TOO!!!


Offline webontheweb

  • Member
  • Posts: 110
Re: cd4 numbers all over the place. depressing
« Reply #6 on: November 06, 2008, 07:38:17 PM »
OKAY OKAY OKAY,  I TOOK A BIG GIRL PILL!!   ;D  YEs, I know it is not the end of the world and it is better to be looking down at the grass  and not looking up at it. 
I do have a wonderful sense of humor.  What I find most amazing is that strangers all the time will tell me that I seem to be the happiest person on earth or very good natured, etc.  I always chuckle, thank  them and then ask the following question>  If I weren't would you really care?  hey ahve to admit that they wouldn't.  It does prove that a pleasant face and good attitude do influence the people in your life.  There is a nurse at the clinic where I go hat is always introducing me to new employees as her inspiration because I am never in a bad mood when I go there.
Well you all know that I am a damn liar, sometimes I am in a very bad mood when I go there, but it is not their fault!
Chris Rick does ROCK.  He was and is hilarious. 
Cheers, boys and girls and those in=between
Love. Eric

 


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