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Author Topic: Just doesn't make sense  (Read 5024 times)

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Offline LeftyBowler300

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  • Posts: 106
Just doesn't make sense
« on: October 22, 2017, 01:34:39 pm »
I can workout, play sports for 2+ hours.

Go for a jog on command.

I feel pretty well. I've gained 20 pounds.

Then I go for labs and find out there are more minutes in an hour than I have cd4's.

I see people with far more cd4's than me having more problems.

I'm terrified that all of the sudden some weird illness is going to take me out.

Maybe I just don't need that many? Or maybe I'm not showing symptoms because my body can't even fight whatever illnesses (if any) that I have?

It just doesn't make sense that I feel as good as I do meanwhile something is making my CD4's crawl, if not halt to a stop.

This could be me being naive, but it's definitely something in the back of my mind. Feels good to get it out.
Apr 1, 2017 DX - CD4 8 , VL 820,000
OI's: Disseminated Histoplasmosis, Thrush, PCP
Apr 17, 2017 started Genvoya, Bactrim, Sporanox, Azitrhomycin
Jun 9, 2017 - CD4 42 (3%) , VL 100
Jul 17, 2017 - CD4 57 (4%) , VL 53
Sep 16, 2017 - CD4 57 (4%) , VL 130 - Ugh..
Oct 20, 2017 - CD4 63 (5%) , VL 100
Dec 1, 2017 - CD4 56 (3%) , VL <20
Mar 15, 2018 - CD4 73 (5%) , VL <20
Nov 5, 2018 - CD4 104 (7%), UD
Jan 26, 2019 diagnosed with HIV-associated DLBCL (lympoma) with 6cm mass near liver w/ abdominal fatty tissue involvement
6 rounds of RR-EPOCH
2 rounds of high dose methotrexate
(8 rounds of IV chemo total)
11 Lumbar punctures with intrathecal chemo
June 5, 2019 - Complete Response/Remission
Feb 20, 2020 - CD4 187, VL UD
Aug 2020 - CD4 247, VL UD
Stopped all prophylaxis
June 2021 - 2 years remission

Offline kentfrat1783

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Re: Just doesn't make sense
« Reply #1 on: October 22, 2017, 02:17:48 pm »
I'm with you on all of it. 

Just a few things I have learned (and has helped me):

1) Some people have lower CD4's then others
2) CD4 raise much slower then your VL going down
3) Also your CD4 count can change from day to day and you have to look at it over the long term.

Now to reality:
1) My numbers are low like yours and it looks like you are getting yours tested monthly.  I get mine every 3 months and that at least gives time for my body to adjust.  Look at the numbers every three months.  Yes easier said then done.
2) Keep active and enjoy what you do.  I was exercising 5-6 days a week before I was admitted to the hospital and now I am having a hard time getting back into it.  I wish I could.  It's the only thing that I enjoyed doing.  I'm told exercise is the best thing when you are positive.
3) Stick with your Rx regiment and don't miss a dose.  I use my phone to remind me. 

Didn't help that my ID doctor, and other specialists that came to see me in the hospital, told me they were shocked I was still alive.  After research I started to understand why they said that.  My ID doctor also said he couldn't believe my numbers, as still to this day he is shocked.  Mostly since I was never Dx'd prior to this instance. 

Also, since you exercise regularly think of it this way.  Have you ever worked out and didn't see a change on the scale (same weight) or didn't visibly see a change in the mirror?  Think of your CD4's in the same way.  Eventually what you are working for will happen.  Just like you don't give up on the gym because one month was bad to you.

Wishing you the best.
Kenneth

Date - CD4 - Percent - VL
08/23/23 - 366 - 26%
06/20/23 - 349 - 21% - UD
04/15/23 - 229 - 19% - <20
11/14/22 - 486 - 24% - 73
10/12/22 - 316 - 19% - <20
06/20/22 - 292 - 21% - <20
01/25/22 - 321 - 22% - <20
09/22/21 - 278 - 19% - <20
02/02/21 - 225 - 19% - <20
06/08/20 - 257 - 20% - <20
03/17/20 - 285 - 19% - 101 (2.00)
12/17/19 - 290 - 20% - <20
09/17/19 - 218 - 16%
06/18/19 - 173 - 16% - <20
03/13/19 - 170 - 16% - <20
January 2019 - Started Triumeq
12/05/08 - 174 - 18% - <20
08/28/18 - 166 - 15% - <20
05/08/18 - 106 - 11% - <20
03/05/18 -   90 - 10% - <20
12/11/17 -   60 -   8%
09/07/17 -   42 -   6% - 54 (1.70)
May 2017 - Started Atripla
05/11/17 -    2 -    1% - 169,969 (5.23)
OI's: PCP
Dx`d May 11, 2017
Location: US

Offline Jim Allen

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Re: Just doesn't make sense
« Reply #2 on: October 22, 2017, 03:35:33 pm »
Counting the numbers instead of focusing on overall health, it sounds like overthinking things. Nothing you will do will increase your CD4's (for long) and its not a measurement of health at all.

Quote
I see people with far more cd4's than me having more problems.

Firstly you could have a 10th of my CD4 cells but they might be far more efficient ones, who knows? Mine might be lazy bastards given the owner (me) it would not surprise me one bit.

Also other people have different histories to you, untreated HIV does damage we know that, how much damage and were in the body varies per person, some this  may be permanent to some people even when the CD4's rise again.

My healthy as an example, well I do have health problems, some of it totally unrelated to HIV and yet I have higher CD4's, its means nothing. Statistically speaking for a few OI's I am at a lower risk that others who have a lower CD4 count, but that does not mean healthy at all.

Jim
« Last Edit: October 22, 2017, 03:38:01 pm by JimDublin »
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Offline zach

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  • Posts: 3,586
Re: Just doesn't make sense
« Reply #3 on: October 22, 2017, 04:21:53 pm »
Don't let a number tell you how to feel. Ever.

Fuck the number. Fuck the bug.

Take your meds like a good boy, and live your life

Worrying doesn't do anything for you, in fact it's counterproductive


Offline Tonny2

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  • Posts: 2,937
Re: Just doesn't make sense
« Reply #4 on: October 22, 2017, 10:54:47 pm »
        ojo     hello my dear friend...picture this, you just had a big battle in your  body, where your soldiers (cd4) and the allies (meds), have the invaders (hiv), runnig and hidimg (reservoirs), i guess, you are winning, now, your soldiers (57). plus your air force (cd8), and other deffenses in your body, will take care of your health, that's why you are feeling good, your med/s is/are working controling the virus...comprende?.

so my friend, if i may, do not worry until you have something to worry about, like Zach mentioned, stress it is not good for you...go and take back control of your life, because your med is taking cintrol of your bug...read 2tcells srory, he had low cd4s for a long time, althiugh, he was UD, that didn't stop him to make a baby...best wishes my  "blocker" friend...hugs                                                                 ojo

ps. i got your pm, i will reply to it, tomorrow, my eye is tired

« Last Edit: October 22, 2017, 11:03:44 pm by Tonny2 »

Offline harleymc

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  • Posts: 1,524
Re: Just doesn't make sense
« Reply #5 on: October 23, 2017, 04:02:50 am »
I've been on meds now about five years and my cd4s  are sitting on 120.

I get a bit bored with my doctors getting stressed about the counts. Apart from KS before the start of medications I've been very well, the only times I was in hospital were overnight visits were, after an assault and, after a concussion falling down stairs.

It seems to me that having relatively low cd4s when on treatment is very different from similar counts prior to medication.

Just live your life.

HUGS

Offline Expat1

  • Member
  • Posts: 385
Re: Just doesn't make sense
« Reply #6 on: October 23, 2017, 12:26:00 pm »
The clinical success of ART for asymptomatic patients is
often not perceived, although the risk of opportunistic infections is reduced to half
after only three months on ART (Ledergerber 1999) – the individual may not realize
what was avoided by starting therapy.

https://hivbook.com/
page 144

I like this book.  It is very complete. 

Offline LeftyBowler300

  • Member
  • Posts: 106
Re: Just doesn't make sense
« Reply #7 on: October 23, 2017, 10:31:58 pm »
I've been on meds now about five years and my cd4s  are sitting on 120.

5 YEARS? Does that also mean 5 years of prophylaxis like Bactrim?

Apr 1, 2017 DX - CD4 8 , VL 820,000
OI's: Disseminated Histoplasmosis, Thrush, PCP
Apr 17, 2017 started Genvoya, Bactrim, Sporanox, Azitrhomycin
Jun 9, 2017 - CD4 42 (3%) , VL 100
Jul 17, 2017 - CD4 57 (4%) , VL 53
Sep 16, 2017 - CD4 57 (4%) , VL 130 - Ugh..
Oct 20, 2017 - CD4 63 (5%) , VL 100
Dec 1, 2017 - CD4 56 (3%) , VL <20
Mar 15, 2018 - CD4 73 (5%) , VL <20
Nov 5, 2018 - CD4 104 (7%), UD
Jan 26, 2019 diagnosed with HIV-associated DLBCL (lympoma) with 6cm mass near liver w/ abdominal fatty tissue involvement
6 rounds of RR-EPOCH
2 rounds of high dose methotrexate
(8 rounds of IV chemo total)
11 Lumbar punctures with intrathecal chemo
June 5, 2019 - Complete Response/Remission
Feb 20, 2020 - CD4 187, VL UD
Aug 2020 - CD4 247, VL UD
Stopped all prophylaxis
June 2021 - 2 years remission

Offline zach

  • Member
  • Posts: 3,586
Re: Just doesn't make sense
« Reply #8 on: October 24, 2017, 06:11:04 pm »
7 years, nadir cd4 of 8, current count 176 held ateady for two years no movement, still on Bactrim

Challenge? I am the challenge, no fucking bug is going to slow me down... fuck aids, you got this

Dont dwell on it, drive on

Offline paintedroom

  • Member
  • Posts: 375
  • Dx`d July 2016
Re: Just doesn't make sense
« Reply #9 on: October 25, 2017, 06:28:48 am »
Similars spot and concerns too.

This is just one of those niggling things that you are going to have to deal with as you go along.That it is not indicative of your total health has nothing to do with the irrationalities of the noodle.
I`m with Jim on this one,Don`t ask what the numbers are..even if his football stadium of cd4`s mock my neurotic confessional box of a lonely crowd ::).I haven`t asked in over 8 months(last count 193) because i simply refuse to have my moods dictated to by numbers alone..I REFUSE IT ! Anyone who has been through a year of this thing knows all too well that grinding worry takes its toll.You have to draw a line for yourself.The rest of your time and how you use it is all important - stay busy(not a problem in this day and age),Take on a difficult challenge,read a difficult book,engage politically.I find there aren`t enough hours in the day to get done what i need to get done.I am currently crippled with back problems and self employed in work that demands the physical - i was moving a long ladder the other day when the heavens opened ..i felt like Klauss kinski in Fitzcarraldo - ladder across my back,wind howling,half mad,soaking wet,full of anti inflammatories,Genvoya,bactrim and felt like falling to my knees and roaring to the heavens - "WHYYYYY ? WHY ME OH LORD ? WHY ME ? TAKE ME NOW YOU SONOFA...etc.etc.
Comic flights aside,you need to make up your mind  about this one..i suggest you stow it and save yourself the anxieties.Take your chances like the rest of em.

Peace,P.
Dx`d mid July 2016
8/8/2016 - CD4 50     VL 50,000
5/9/2016 -  CD4 150
13/9/2016  VL  undetectable.
March `17 - CD4 193   VL undetectable.
March  `18 CD4 214    VL undetectable
March 2019 CD4 325  VL UD
Genvoya - Changed to Biktarvy feb 2021

Offline CaveyUK

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  • Posts: 1,642
Re: Just doesn't make sense
« Reply #10 on: October 26, 2017, 04:46:23 pm »
You're on meds, the virus is suppressed and you feel great. Just go with those facts and don't obsess too much about the CD4 count.

Yes, if you start with a low nadir count it often takes a lot longer to rise but the key thing is that you are on an upward curve, and your body can efficiently fight other stuff because it is now no longer pre-occupied with fighting a rampant HIV infection.

Yes, at lower counts OI's are more of a concern but frankly the taking of ARV medication will drastically reduce that risk regardless of count. Taking bactrim as well pretty much protects you all round. As your CD4 rises it becomes less and less of a concern to the point where it simply won't be one.

And the fitter and healthier you keep, the more odds you are stacking in your favour too.

So focus on the things you can do something about - keeping fit and taking your meds. Everything else will just happen in due course and you can go about living a very long and healthy life.
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