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Author Topic: scared about my numbers even though they're moving in the right direction  (Read 1799 times)

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Offline wolfthorn

  • Member
  • Posts: 85
I got my latest labs back, and I guess I should be happy about the fact that it's moving in the right direction, but it's starting to make me worried that I'm going to need to change from my treatment. I haven't talked to the doctor yet (got the info online) but viral suppression just seems so far away right now.  >:(

Day  /CD4 /      VL
0  /<20 / 286,000
18 / 64 / 1194
48 / 87 / 511

7/10/13: Oraquick at Home (+)
7/11/13: CD4 <20, VL 286,000
7/26/13: Start Stribild, Bactrim, Azithromycin
8/13/13: CD4 64, VL 1194
9/11/13: CD4 87, VL 511
10/14/13: CD4 164, VL 34
10/15/13: Stop Azithromycin!

Offline anniebc

  • Member
  • Posts: 5,939
  • AM member since 2003
Re: scared about my numbers even though they're moving in the right direction
« Reply #1 on: September 16, 2013, 09:06:24 PM »
Hi there

I'm going to assume that day 48 is the last day you were tested and that you are now sitting at 87 CD4's with a VL of 511.

Your numbers are definitely heading in the right direction so I'm not sure why you are worried about changing your treatment, if the meds you are on are working why change? has your Doc said anything?.

I hope that you are taking an antibiotic with your CD4's being that low, if not then you should be, the last thing you need is PCP, the guys here normally take Bactrim, here in NZ we don't have Bactrim but I'm on a med called Trisul, an antibiotic I have to keep taking for a while yet even though my numbers have just gone over 200.

Take care
Aroha
Jan
-----------------------------------------------------------------------
Never knock on deaths door..ring the bell and run..he really hates that.

Offline darryaz

  • Member
  • Posts: 450
Re: scared about my numbers even though they're moving in the right direction
« Reply #2 on: September 16, 2013, 09:09:15 PM »
I also look at your impatience as a good sign.  It means you feel good enough to want to get back to living.

Hang in there, you're moving in the right direction!!!!

Offline jkinatl2

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  • Posts: 6,007
  • Doo. Dah. Dipp-ity.
Re: scared about my numbers even though they're moving in the right direction
« Reply #3 on: September 16, 2013, 09:12:34 PM »
It took me five years to go from 12 cd4 to 230.

Patience :)


"Many people, especially in the gay community, turn to oral sex as a safer alternative in the age of AIDS. And with HIV rates rising, people need to remember that oral sex is safer sex. It's a reasonable alternative."

-Kimberly Page-Shafer, PhD, MPH

Welcome Thread

Offline wolfthorn

  • Member
  • Posts: 85
Re: scared about my numbers even though they're moving in the right direction
« Reply #4 on: September 16, 2013, 10:02:35 PM »
Thanks all...

I have some molluscum on my face, I'm going to the dermatologist tomorrow to get them treated, and my ankle is not doing great, but all in all I am feeling much better physically... no more night sweats, and I've gained 15 pounds since starting treatment (and i needed it!) I go to the gym and do some light exercise several times a week, nothing like what I used to do but enough to keep me sane. That's mostly all I do, other than work.

The other day this guy hit on me at the gym, which kind of shocked me... so I guess I don't look as hideous as I think I do.

I am on Bactrim and Azithromycin right now as well... whatever is necessary to keep the infections away!
7/10/13: Oraquick at Home (+)
7/11/13: CD4 <20, VL 286,000
7/26/13: Start Stribild, Bactrim, Azithromycin
8/13/13: CD4 64, VL 1194
9/11/13: CD4 87, VL 511
10/14/13: CD4 164, VL 34
10/15/13: Stop Azithromycin!

Offline darryaz

  • Member
  • Posts: 450
Re: scared about my numbers even though they're moving in the right direction
« Reply #5 on: September 16, 2013, 10:09:01 PM »
The other day this guy hit on me at the gym, which kind of shocked me... so I guess I don't look as hideous as I think I do.

Feels good, doesn't it?  That's a great sign you're well on your way to normal life!!!

Offline leatherman

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  • Posts: 6,184
  • Google and HIV meds are Your Friends
Re: scared about my numbers even though they're moving in the right direction
« Reply #6 on: September 16, 2013, 11:14:33 PM »
Patience :)
Patience :)

it took me 17 yrs to go from 5 cd4 to 305

by the way, you know if you look at your numbers in a more positive way, you'll see that your numbers are absolutely amazing! In barely two months, your cd4s have QUADRUPLED and your viral load has gone to NEARLY undetectable (heck! about 6 yr ago, 500 WAS undetectable LOL)

You're clearly having an absolutely awesome response to your meds and rather than worry or fret, what you should be doing is expecting your doctor to explain how well your regimen is working and that you have absolutely nothing to worry about - as long as you stay adherent to your meds.
leatherman (aka mIkIE)


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

Offline wolfthorn

  • Member
  • Posts: 85
Re: scared about my numbers even though they're moving in the right direction
« Reply #7 on: September 18, 2013, 08:19:41 PM »
Thanks everyone for all the encouragement. It's really good to hear it from people who have gotten through it. 

I'm scared that my ankle will not get better, that my molluscum will stick around, that I'll never be back in the gym. I just have to be patient. My goal was cd4=100 by christmas, and undetectable ASAP, and I guess I am at least moving in that direction. The worst thing is when you get on a train going in the wrong direction (I actually once sat down on the wrong plane... it was a small airport).

 I am actually taking a week off from work next week, my first time off since diagnosis. My plan is to lay on the beach for a week, rest and recuperation. I need it. Let's just hope there are no hurricanes! I've already been through Hurricane Me.

7/10/13: Oraquick at Home (+)
7/11/13: CD4 <20, VL 286,000
7/26/13: Start Stribild, Bactrim, Azithromycin
8/13/13: CD4 64, VL 1194
9/11/13: CD4 87, VL 511
10/14/13: CD4 164, VL 34
10/15/13: Stop Azithromycin!

Offline Raf

  • Member
  • Posts: 256
  • Bald by choice
Re: scared about my numbers even though they're moving in the right direction
« Reply #8 on: September 20, 2013, 02:13:43 AM »
I remember back when I was Dx, I had a case of molluscus contagious...all over my face and head, I couldn't stand to even look myself at the mirror at that time, those things made me feel like an abomination or something...but after 3 or 4 months of starting meds all those things disappeared (I was Dx by May, and after december I could shave my head for the first time, I didn't before because the hideous look of my face and head).

Please be patient and keep going with your treatment, those things will not be visible in time.
Dx: 05/14/2008
Latest HIV Meds combo I've been taking:

Kaletra + Combivir (since 05/16/2008 - today)

Offline phillypinko

  • Member
  • Posts: 112
Re: scared about my numbers even though they're moving in the right direction
« Reply #9 on: September 20, 2013, 02:44:07 AM »
I am sorry if I sound grim but the worst part of testing positive was understanding what it meant to be mortal. I am haunted about what happens when we die. Is there more like a heaven? Do we just rot in he ground and cease to exist? Its horrible to contemplate. HORRIBLE!

Offline leatherman

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  • Posts: 6,184
  • Google and HIV meds are Your Friends
Re: scared about my numbers even though they're moving in the right direction
« Reply #10 on: September 20, 2013, 06:10:23 PM »
Is there more like a heaven? Do we just rot in he ground and cease to exist?
since we have no idea what's on the other side, or even if there IS an other side, you need to focus on the here and now. You need to make the most of every day (even if that means lying in bed all day long LOL). You need to do everything you want or hope to do. And you need to enjoy it!!!

Even though I was reared baptist, I could care less what happens after this life. What I do know is that I have a lot of dead friends and dead partners, who didn't get to enjoy today. To not make a mockery of their lives or my own, I enjoyed the heck out of my free lunch at the Charlotte Ryan White meeting today. I enjoyed listening to my music blasting while I flew down the highway; and I'm about to enjoy some yummy cheesy potatoes; then with a little luck I'm going to be enjoying some rockin' sex later.

don't worry about what may or may not happen in the future when you're dead, worry about today by enjoying it! ;)
leatherman (aka mIkIE)


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

Offline wolfthorn

  • Member
  • Posts: 85
Re: scared about my numbers even though they're moving in the right direction
« Reply #11 on: September 21, 2013, 06:05:08 PM »
I think that what has been bugging me out is that I've felt worse since starting the treatment... Especially with my face looking funky. It's hard to walk down the street and see all the healthy people enjoying themselves. I am severely jealous.  I am keeping my fingers crossed that this all sort of resolves as my body repairs itself. I am only 32, I'm hoping that I still can bounce back a bit!

As for an afterlife, I really can't worry about what happens after I am dead. I expect nothingness, but it would be nice to see some people again! ( then again, how would you manage the social calendar? Are there restaurants? )
7/10/13: Oraquick at Home (+)
7/11/13: CD4 <20, VL 286,000
7/26/13: Start Stribild, Bactrim, Azithromycin
8/13/13: CD4 64, VL 1194
9/11/13: CD4 87, VL 511
10/14/13: CD4 164, VL 34
10/15/13: Stop Azithromycin!

Offline phillypinko

  • Member
  • Posts: 112
Re: scared about my numbers even though they're moving in the right direction
« Reply #12 on: September 21, 2013, 07:37:22 PM »
I think that what has been bugging me out is that I've felt worse since starting the treatment... Especially with my face looking funky. It's hard to walk down the street and see all the healthy people enjoying themselves. I am severely jealous.  I am keeping my fingers crossed that this all sort of resolves as my body repairs itself. I am only 32, I'm hoping that I still can bounce back a bit!

As for an afterlife, I really can't worry about what happens after I am dead. I expect nothingness, but it would be nice to see some people again! ( then again, how would you manage the social calendar? Are there restaurants? )
We will all have 9% body fat and look like we did at age 28. Heaven is a completely different dimension with different laws of physics. Just about anything goes. If you want to go out to eat you have to go to the restaurant section where the greatest chefs in human history have dishes that will make you cry tears of joy.

 


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