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Author Topic: HELP! How could I have gone From HIV+ to AIDS Overnight? UPDATE????  (Read 16113 times)

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Offline AustinWesley

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UPDATE:  See my last post.  What do you think???????

Now I know why my doctor didn't return my call back with my labs.   I am shaking right now because of this.  Why did I ever listen to him and believe I could go for years or even months?

Now I HAVE AIDS?

How the fuck could this have happened?

My last test results are below, this info I finally got out of the nurse as the worst wake up call of my life a few minutes ago.

My heart is racing and I am totally freaked out.

MY CD4 is now 139   AIDS?

Hands are shaking as I type this..........  How could this happen in a MONTH?

Right now I need serious help, and I can't understand this.   Don't listen to any doctor telling you this crap of years and years.

Wesley
« Last Edit: February 21, 2007, 01:28:07 AM by AustinWesley »
Diag. 3/06  Infected aprx. 2 mo. Prior
Date        CD4   %      VL
4/6/06     627    32    36,500     NO MEDS YET!
6/7/06     409    27    36,100
8/23/06   408    25     22,300
1/2/07     354    23     28,700
2/9/07     139    30     23,000  Hep A Vaccine same day???
2/21/07   274    26     18,500 
3/3/07    RX of Truvada/Sustiva Started.
4/5/07    321     27      Undectable 1st mo.  
5/16/07  383     28    Undectable 2nd mo.
8/10/07  422     32   UD <48 on new scale!

Offline Rainbow1

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Re: HELP! How could I have gone From HIV+ to AIDS Overnight? Scared!
« Reply #1 on: February 20, 2007, 01:17:38 PM »
Wesley , after my reply to alex about stopping my meds, i have had alot  of replys that i am trying to understand, when i was first diagnosed i was given the choice to start meds or not i choose to start before my numbers went that low, my numbers have dropped below the 200 since i have been on the meds but i have been through three different chemo treatments for cancer and my numbers as i posted in the other post are now 208. so please just take care of yourself and given time your numbers will come back up

Offline allopathicholistic

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Re: HELP! How could I have gone From HIV+ to AIDS Overnight? Scared!
« Reply #2 on: February 20, 2007, 01:22:37 PM »
Your percentage (30%) is healthy.

Offline newt

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Re: HELP! How could I have gone From HIV+ to AIDS Overnight? Scared!
« Reply #3 on: February 20, 2007, 01:29:14 PM »
Hey Mr Austin

bummer

I think I would panic, I did panic when I got the CD4 result of 8 after being in my 300s, it was a mix-up, so..

First, get a retest, labs make mistakes, and CD4 does bounce around too, with a % of 30 a mix up/odd result for the day seems likely (CD4 of 139 would normally be a CD4 % of about 8%)

Second, 1-3% of people need treatment real soon, like within a year, this everyone gets 10 year before meds thing is a fib, docs should be more honest

Third, treatment works, it works whether it's 1 yr before meds or 15, and while it may be coming sooner than you thought, it will still work

Take care

- matt (not here, but here) the newt
« Last Edit: February 20, 2007, 01:31:18 PM by newt »
"The object is to be a well patient, not a good patient"

Offline Ihavehope

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Re: HELP! How could I have gone From HIV+ to AIDS Overnight? Scared!
« Reply #4 on: February 20, 2007, 01:32:58 PM »
Austin

Research tells us that CD4 cells are the numbers we should focus on mostly, and that is true BUT there are other factors as well such as VL and %. I am so sorry to hear about your CD4 counts falling to that number but your % does not indicate that you have AIDS. Usually (I am not an expert) you need to have a percentage lower than 15% and less than 200 CD4 cells.

I know how u feel right now and all I can tell you is to try to stay calm babe. You will be ok and listen to what your doctor tells you. I am guessing he told you that you have to start meds soon right? Ask your doc to put you on a phropholactic to avoid PCP if he hasn't told you yet. REMEMBER numbers go up and down and unfortunately your numbers right now went below 200, but they will go up again once you start meds. What is your VL right now?

the 5 to 10 year to get AIDS diagnosis is a bunch of bull. Now in days that is becoming less likely. Supposely they dont know why newly infected people CD4's are dropping so low so quick. Perhaps it could be that the older the virus gets the wiser it is and knows how to attack one's immune system.

Please keep us posted Austin, and please stay calm.
Infected: April 2005
12/6/06 - Diagnosed HIV positive
12/19/06 - CD4 = 240  22% VL = 26,300
1/4/07 - CD4 = 200 16% VL = ?
2/9/07 = Started Kaletra/Truvada
3/13/07 = CD4 = 386 22% VL ?

Offline Lisa

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Re: HELP! How could I have gone From HIV+ to AIDS Overnight? Scared!
« Reply #5 on: February 20, 2007, 01:35:29 PM »
Aside from just having the shit scared out of yourself, you are no less healthy at this moment than you were an hour ago when you were posting in other threads.
Please don't let the word, or the number frighten you so much.
Alex has a point, your percentage is still better than mine, and I have been undectable with a 500/600CD4 for years.
Don't Panic!! You ARE going to be OK. Try to calm yourself down a bit, take some breaths, and look at it with your analytical mind. You KNOW this isn't going to suddenly kill you tonight, or tomorrow. I am sorry that the doc was a bit too patronizing of you however.
Gather yourself, do some research, and have your questions ready for the next visit, because you will need to be your own best advocate when it comes to the consideration of a med coctail.
I'll PM you.
No Fear  No Shame  No Stigma
Happiness is not getting what you want, but wanting what you have.

Offline Ihavehope

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Re: HELP! How could I have gone From HIV+ to AIDS Overnight? Scared!
« Reply #6 on: February 20, 2007, 01:41:13 PM »
The % and CD4 count don't make much sense to me. I think there must have been a slight mistake in the lab. Your % is actually very good for not being on meds yet.

That is why when my doc told me 200 CD4 cells and wanted me to wait another 2 weeks I said F**k it, let me start now I dont wanna see them fall lower.

I am pretty show there was a blip and your CD4 cells are higher.

Al
Infected: April 2005
12/6/06 - Diagnosed HIV positive
12/19/06 - CD4 = 240  22% VL = 26,300
1/4/07 - CD4 = 200 16% VL = ?
2/9/07 = Started Kaletra/Truvada
3/13/07 = CD4 = 386 22% VL ?

Offline skeebo1969

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Re: HELP! How could I have gone From HIV+ to AIDS Overnight? Scared!
« Reply #7 on: February 20, 2007, 01:42:17 PM »

   Wes...

   Shit happens and I know first hand because mine crashed pretty much the same way.  It is quite the wake up call I know...  Like you, I was told I would go at least two-three years before I ever needed meds.   Like you, my numbers pretty much showed this might be true.   When I was given  this dreadful AIDS diagnosis my Cd4's were 137 and 13.3%.... Like you, I freaked and did not understand.... Like you, I was scared of the meds...  Now like me, you are going to have to make a very serious choice.   I hope like me, the meds agree with you and you experience little/no side effects.  As allopathicholistic said your percentage shows you will hopefully make a good rebound with the meds...  Shit I did and you can too...  Try to relax.  God I use to hate when people would tell me that.

  Time to get over your fears Wes....

  Thomas
  (Who hates to see you in fear)
I despise the song Love is in the Air, you should too.

Offline Lisa

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Re: HELP! How could I have gone From HIV+ to AIDS Overnight? Scared!
« Reply #8 on: February 20, 2007, 01:44:12 PM »
I agree with (not here) Newt. Get another set of labs before you hit the panic button. Did you know that your CD4's can vary at any point in a given day?  I try to always make sure my doc visits are at the same time of day.
No Fear  No Shame  No Stigma
Happiness is not getting what you want, but wanting what you have.

Offline Life

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  • Member 2005
Re: HELP! How could I have gone From HIV+ to AIDS Overnight? Scared!
« Reply #9 on: February 20, 2007, 01:48:12 PM »
Wes, as everyone elese has said... Dont Panic!   30% is the numer Im focusing on...  Now with that Wes,  yes, you are nearer to that next step you need to think about.... But you have already prepared for that.   Im curious as to what your doctor has explained to you about cd4 vs % relationship and what his recomendations are as far as retesting on your cd4... Your getting alot of hugs right now....  Feel em...

Love,
« Last Edit: February 20, 2007, 01:50:38 PM by Eric »

Offline Queen Tokelove

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Re: HELP! How could I have gone From HIV+ to AIDS Overnight? Scared!
« Reply #10 on: February 20, 2007, 01:49:18 PM »
Wesley,

Don't give up sweetie. I'm going with the others and say it has to be a mistake and you need to get some more bloodwork done. Nothing is perfect and it could simply be a mistake. Not taking this lightly mind you cause if it was me , I would be going off too. But if it happens to be correct, then it's time for meds. It's not over, not by a long shot, don't you throw in the towel and just give up...FIGHT...As you know I'm here for you if you want to talk away from these forums....Just say the word..
Started Atripla/Ziagen on 9/13/07.
10/31/07 CD4-265 VL- undetectable
2/6/08 CD4- 401 VL- undetectable
5/7/08 CD4- 705 VL- undetectable
6/4/08 CD4- 775 VL- undetectable
8/6/08 CD4- 805 VL- undetectable
11/13/08 CD4- 774 VL--undetectable
2/4/09  CD4- 484  VL- 18,000 (2 months off meds)
3/3/09---Starting Back on Meds---
4/27/09 CD4- 664 VL-- undetectable
6/17/09 CD4- 438 VL- 439
8/09 CD4- 404 VL- 1,600
01-22-10-- CD4- 525 VL- 59,000
Cherish the simple things life has to offer

The Royal Blog

Offline AustinWesley

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    • HIV Discussion Group on Myspace!
Re: HELP! How could I have gone From HIV+ to AIDS Overnight? Scared!
« Reply #11 on: February 20, 2007, 02:18:46 PM »
Wesley,

Don't give up sweetie. I'm going with the others and say it has to be a mistake and you need to get some more bloodwork done. Nothing is perfect and it could simply be a mistake. Not taking this lightly mind you cause if it was me , I would be going off too. But if it happens to be correct, then it's time for meds. It's not over, not by a long shot, don't you throw in the towel and just give up...FIGHT...As you know I'm here for you if you want to talk away from these forums....Just say the word..

Im trying to not burst into tears.   Uh, too late.  ; (

I'm so fucking angry.   

I've finally got the not idiot nurse on the phone and remained calm and she agreed that the numbers are all over the place.   I'm waiting for a call back to see if they can get me in today for a retest because even she doesn't get the CD4 at 139 and my % jumps 7 points.

So, I already knew meds were planned, but I am assuming they'll also want to give me Bactrim as a precautionary measure?

The other nurse felt this counted as an emergency deal to get me in by tommorow.

I've told my sister while I remained calm and here we go again.   "It must be a mistake in the labs"    I've heard all that before.  And now I will be expecting a call from my mom.   Oh good news mom, I paid attention to all these doctors who told me to wait and now I'll forever be labled with AIDs if I don't die in the next month anyways.   What am I supposed to tell her?

So now my 2nd worst nightmare came true.

I'd had friends coming in for the weekend looking forward to a lot of fun.   Sorry, guys, I'm having an emotional meltdown cause I got AIDS and can you please stay at a hotel.

I am absolutely furious with both doctors for advising me not to take meds from that last time.   THIS IS WRONG.   I don't believe in misleading people like that. 

So my doctor is gone today and I can hardly wait for not only the meds but all the other crap they'll now want to add on top of Atripla or whatever.

I'm pretty strong usually but this just has done me in.   

DON'T BELIEVE it when people continue to promote Oh, you'll be fine for years.

It's still a surreal nightmare to me and I wish I'd gone with my own decision back before when I had a 200+ point drop in 2 months, but was talked out of it.  I'm angry with myself.

Wesley
Diag. 3/06  Infected aprx. 2 mo. Prior
Date        CD4   %      VL
4/6/06     627    32    36,500     NO MEDS YET!
6/7/06     409    27    36,100
8/23/06   408    25     22,300
1/2/07     354    23     28,700
2/9/07     139    30     23,000  Hep A Vaccine same day???
2/21/07   274    26     18,500 
3/3/07    RX of Truvada/Sustiva Started.
4/5/07    321     27      Undectable 1st mo.  
5/16/07  383     28    Undectable 2nd mo.
8/10/07  422     32   UD <48 on new scale!

Offline Ihavehope

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  • Yes, I'm a cry baby, AND WHAT?
Re: HELP! How could I have gone From HIV+ to AIDS Overnight? Scared!
« Reply #12 on: February 20, 2007, 02:32:29 PM »
Austin

Don't be angry at yourself. It is not your fault and the doctor's can not predict how much your CD4 cells will increas and decrease. I was furious as well when my CD4 cells fell from 240 to 200 in a 3 week period even after my doctor said she would bet money that my counts would increase and instead they decreased. My % went from 22% to 16% and she didn't even have the courage to tell me it was an AIDS diagnosis all she said was "it is still in the 200's but your % fell to 16% so I am putting you on Bactrim and you will start meds in 2-3 weeks once I receive your geno type results".

Did you get a flu or pneumonia shot recently? Did you get a cut anywhere in your body? These can be some factors that can lower your CD4 counts. When do you get to talk to your doctor and discuss your labs and meds? If you still are gonna get another lab test then you should consider still being put on bactrim, "just in case".

It's ok to cry and feel hurt, let it all out.

AL
Infected: April 2005
12/6/06 - Diagnosed HIV positive
12/19/06 - CD4 = 240  22% VL = 26,300
1/4/07 - CD4 = 200 16% VL = ?
2/9/07 = Started Kaletra/Truvada
3/13/07 = CD4 = 386 22% VL ?

Offline Maestro

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Re: HELP! How could I have gone From HIV+ to AIDS Overnight? Scared!
« Reply #13 on: February 20, 2007, 02:42:57 PM »
Austin,

You've given me a lot of good advice about insurance, so let me try and return the favor.  My Uncle has had "aids" for 7 years.  His cd4 has never gone above 200 and his percentage is around 11-12%.  What I have learned from this site is that a lot is not understood about the #'s.  Low #'s do not translate in to poor health.  At least from my experience with him.  It seems many people have started meds with way lower #'s and are doing fine now. 

I think the most important number is undetectable viral load and a couple months on meds should put you right there at undetectable.

M

Offline AustinWesley

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Re: HELP! How could I have gone From HIV+ to AIDS Overnight? Scared!
« Reply #14 on: February 20, 2007, 03:00:16 PM »
Well, after the lovely wake up call to try and keep information from me for another week and a half I weeded that out of her.

Now, the other one feels it's an emergency.

I guess they all went to lunch cause either the doctor gave me the worst advice of my life or the lab results are wrong.

I've been reading everyone's advice and opinions, rest assured I'll be glued to this computer until I'm on the phone or get the labs redone.

I'm not sick at all (other than from the emotional trauma right now).   I don't have any cuts, can't even recall the last time I sneezed.   I'd actually not been feeling overly fatiqued.  I'd done nothing different that I can think of. No drastic loss of weight or gain.

I'd had a genotype done shortly after diag. and it came back clear.   All other stuff was normal.

I don't think considering the history of my labs that anyone can make sense out of it.  To me, that CD4 and percent drastic change from a month ago does not add up?

So, I don't want to tell my mom yet cause I'm afraid she'll have a heart attack.   Just yesterday I was talking with her and they'd called her in for some diabetes related drama.

I'd not had labs done at that lab before.  This is the only thing different.   It happens to be located in the same building as my doctor who is MIA and apparently trying to sort out a reasonable explanation over the next 10 days for what the Hell is going on.

Thanks for the PM's too.   I'd like to let everyone be able to hear what all of you guys say here so this doesn't happen to anyone else.

Lab mistake?  Maybe?  Aids in a month?   WTF!

All I can wonder now is if I have cancer or something?   

Love ya guys for the advice and thoughts, even the one's that I've never talked with.

Wesley

Diag. 3/06  Infected aprx. 2 mo. Prior
Date        CD4   %      VL
4/6/06     627    32    36,500     NO MEDS YET!
6/7/06     409    27    36,100
8/23/06   408    25     22,300
1/2/07     354    23     28,700
2/9/07     139    30     23,000  Hep A Vaccine same day???
2/21/07   274    26     18,500 
3/3/07    RX of Truvada/Sustiva Started.
4/5/07    321     27      Undectable 1st mo.  
5/16/07  383     28    Undectable 2nd mo.
8/10/07  422     32   UD <48 on new scale!

Offline racingmind

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  • Posts: 236
Re: HELP! How could I have gone From HIV+ to AIDS Overnight? Scared!
« Reply #15 on: February 20, 2007, 03:20:08 PM »
Wesley,

Was there anything unusual about the day when you had the blood drawn?  Were you stressed, etc?  I have heard that things like that can have an effect on numbers.   I always try to be in a good place mentally when I go for blood draws.  Your percentage is really good...which is why I think it might be a fluke....I'd retest right away..and then again maybe 2 weeks later.....  Hang in there Wesley.  Try not to freak out until you have more information.  We all know that nothing is written in stone where HIV is concerned....

We are here for you....if you wanna chat...go to thinkpoz....
Tested Negative: 5/06
Tested Positive: 9/06 
9/06: CD4: 442 (28%) VL: +100,000
10/06: CD4: 323 (25%) VL: 243,440
11/06: CD4: 405 (28%) VL: 124,324
12/06: CD4: 450 (29%) VL: 114,600
1/07: CD4: 440 (27%) VL: 75,286
3/07: CD4: 459 (30%) VL: 44,860
5/07: CD4: 353 (24%) VL: 50,852
7/07: CD4: 437 (29%) VL: 39,475
9/07: CD4: 237 (32%) VL: 372,774
10/07: CD4: 324 (27%) VL: 115,454 
Started Atripla: 10/07
11/07: CD4: 524 (?%) VL: Undetectable!
2/08: CD4: 653 (35%) VL: undetectable
5/08: CD4: 822 (40%) VL: undetectable
8/08: CD4: 626 (35%) VL: undetectable
12/08: CD4: 619 (36%) VL: undetectable
3/09: CD4: 802 (38%) VL: undetectable
7/09: CD4: 1027 (43%) VL: not tested
10/09: CD4: 1045 (43%) VL: undetectable

Offline AustinWesley

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Re: HELP! How could I have gone From HIV+ to AIDS Overnight? Scared!
« Reply #16 on: February 20, 2007, 03:44:31 PM »
Racingmind (That's what mine's doing)

No, there was nothing.  Based on the prior counts in Jan. I'd told the doc I saw a clear trend and wanted to start meds.   Since the prior doc hadn't bothered to do complete panels on all my other junk liver function, blood sugar etc.   I suggested the set of labs be done right there prior to starting meds so I could properly track "Progress"!

So, 8 or 9 viles of blood later I get this mixed up mess. 

I'd gotten to that office early and wasn't overly stressed.  After 5 sets of labs it had become a routine.   

Although, I had a prior incident at another lab testing site which I don't use anymore.   They just drawn everything and I'd gotten home.  Phone rang and it was they'd dropped some viles of my blood in the centrifuge machine so I had to had to go back.   That was a long time ago.

But at least thier final results were better than this lab.   

Now, since no one is calling me back I can only assume:

1)  Major Lab Fuck Up
2)  I have some other disease like cancer too and they are scrambling to figure out how to tell me
3)  I have a bizarre strain of HIV or it went undiagnosed for 15 years and all the HIV tests I had were all wrong
4)  My virus is bipolar but has been on a manic streak, that just went depressive
5)  The nurse just likes fucking with me.
6)  There is a God and he wants me dead.
7)  My doctor doesn't have the balls to admit he doesn't know shit and is affraid to tell me he was wrong in telling me it was a bad  idea to start meds.

I'm sure as I sit here with still no call back that something is wrong and if I do have cancer or some other God Awful nightmare I don't know how I will handle it.

Other than the seroconversion bit which was bad I've not had really any physical changes other than what I'd described repeatedly as a serious fatigue all the whole time.   The female doc I got rid of was the one who suggested that was all in my head and based on my last numbers told me to come back in MAY!

How many T cells would I have left by May?   Should we take a poll?

Maybe I'll do a poll on this,  or better yet I should do a poll on all of those other options and let everyone here take a shot at it ; )

I don't know what to do, laugh, cry, scream  (another poll)

Seriously, I hope that someone here can come up with some rational scenario?

Love,

Wesley
Diag. 3/06  Infected aprx. 2 mo. Prior
Date        CD4   %      VL
4/6/06     627    32    36,500     NO MEDS YET!
6/7/06     409    27    36,100
8/23/06   408    25     22,300
1/2/07     354    23     28,700
2/9/07     139    30     23,000  Hep A Vaccine same day???
2/21/07   274    26     18,500 
3/3/07    RX of Truvada/Sustiva Started.
4/5/07    321     27      Undectable 1st mo.  
5/16/07  383     28    Undectable 2nd mo.
8/10/07  422     32   UD <48 on new scale!

Offline heartforyou

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  • I must be a survivor in many ways...
Re: HELP! How could I have gone From HIV+ to AIDS Overnight? Scared!
« Reply #17 on: February 20, 2007, 03:53:56 PM »
Wesley,

now, take a deep breath first...

I had 7 CD4 and I felt great... so what, even if the count is correct, you are not going to die tomorrow.
Maybe you need some shock therapy like reading my figures to realise there is nothing utterly wrong.
Your percentage being at 30 is great.
In my 20 years of HIV I learned some important lessons concerning figures :

1.What counts is how I feel....no big help if my T count is at 950 and I feel lousy.
2. CD counts can go up and down. Even the place and time where the sample was taken can give a difference in counts.
3.Percentage is what counts the most.

I hope you feel a little bit better now. Rely a bit on us oldies. We all have been there.

Hermie, who has gone from 1200 to 7 and up to 950 again....

Hugs to you Wesley. You will be fine.
Diagnosed in 1987 and still kicking
Viread, Kivexa (Epzicom),Viramune once daily

Happiness is the freedom of breathing fresh air every day.

Offline Ihavehope

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Re: HELP! How could I have gone From HIV+ to AIDS Overnight? Scared!
« Reply #18 on: February 20, 2007, 04:05:08 PM »
1)  Major Lab Fuck Up Great Possibility based on your CD4 %
2)  I have some other disease like cancer too and they are scrambling to figure out how to tell me Not Likely
3)  I have a bizarre strain of HIV or it went undiagnosed for 15 years and all the HIV tests I had were all wrong Not likely, you may have had it a little longer than you estimate BUT if you had your yearly test then likely not
4)  My virus is bipolar but has been on a manic streak, that just went depressiveYea your virus is a crazy mutha*ucker
5)  The nurse just likes fucking with me.No, you can sue her.
6)  There is a God and he wants me dead.You will not die any time soon
7)  My doctor doesn't have the balls to admit he doesn't know shit and is affraid to tell me he was wrong in telling me it was a bad  idea to start meds.
Your doctor was "hoping" to see an increase in CD4 cells but it didn't happen but now YOU have to make the decisions.
« Last Edit: February 20, 2007, 04:33:24 PM by Ihavehope »
Infected: April 2005
12/6/06 - Diagnosed HIV positive
12/19/06 - CD4 = 240  22% VL = 26,300
1/4/07 - CD4 = 200 16% VL = ?
2/9/07 = Started Kaletra/Truvada
3/13/07 = CD4 = 386 22% VL ?

Offline RapidRod

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Re: HELP! How could I have gone From HIV+ to AIDS Overnight? Scared!
« Reply #19 on: February 20, 2007, 04:08:11 PM »
If you never have had an OI with less than a 200 CD4, you don't meet the definition of AIDS.

Offline racingmind

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Re: HELP! How could I have gone From HIV+ to AIDS Overnight? Scared!
« Reply #20 on: February 20, 2007, 04:14:13 PM »
Yeah Wesley,

Listen to those who have been there.  They know what they are talking about.  I know it's hard waiting for the call back.   I know it's harder to say 'I have AIDS' than it is to say "I'm HIV positive".   They are just words.  It's just a classification system.  Even if it turns out that your CD4 Number is correct, you are going to get the help you need.  BREATHE.   It's going to be alright.  You are not ill.   You are not going to get ill overnight.  Make a cup of green tea and sit down in a quiet room and concentrate on something else for now.
A good book or a engrossing movie.  Give your mind a break from all of this.  The call will come and you will be better able to listen and comprehend what they have to say.   It's the best advice I can offer.

It could be nothing, remember that.  Labs fuck up all the time.     
It's going to be okay.

BREATHE.
Tested Negative: 5/06
Tested Positive: 9/06 
9/06: CD4: 442 (28%) VL: +100,000
10/06: CD4: 323 (25%) VL: 243,440
11/06: CD4: 405 (28%) VL: 124,324
12/06: CD4: 450 (29%) VL: 114,600
1/07: CD4: 440 (27%) VL: 75,286
3/07: CD4: 459 (30%) VL: 44,860
5/07: CD4: 353 (24%) VL: 50,852
7/07: CD4: 437 (29%) VL: 39,475
9/07: CD4: 237 (32%) VL: 372,774
10/07: CD4: 324 (27%) VL: 115,454 
Started Atripla: 10/07
11/07: CD4: 524 (?%) VL: Undetectable!
2/08: CD4: 653 (35%) VL: undetectable
5/08: CD4: 822 (40%) VL: undetectable
8/08: CD4: 626 (35%) VL: undetectable
12/08: CD4: 619 (36%) VL: undetectable
3/09: CD4: 802 (38%) VL: undetectable
7/09: CD4: 1027 (43%) VL: not tested
10/09: CD4: 1045 (43%) VL: undetectable

Offline David_CA

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Re: HELP! How could I have gone From HIV+ to AIDS Overnight? Scared!
« Reply #21 on: February 20, 2007, 04:21:51 PM »
Wes,
Unless you know when you were infected, you may have already been fine for years.  Your numbers are much better than mine were when I ended up sick as hell with PCP.  Although the numbers are important, your health is what matters most, to me, and you haven't mentioned any OI's or anything else wrong.  I think all the Dr's can do is make an educated guess about how quickly ones numbers will take to dip into the 'worry zone'.  Also, I kinda think they say all the positive things they say to keep us from freaking out, to sort of 'ease' into the whole HIV thing. 

Even if  it's not a lab mistake, can't our CD4 numbers jump around quite a bit?  I'd definitely want another set of labs run, and I certainly wouldn't tell my family too much until I knew for SURE that the numbers were correct.  As RR said, I think you have to meet two criteria to be diagnosed with AIDS. 

Take care and do what you can to not stress too much (easier said than done, I know) until you get more info.

David
Black Friday 03-03-2006
03-23-06 CD4 359 @27.4% VL 75,938
06-01-06 CD4 462 @24.3% VL > 100,000
08-15-06 CD4 388 @22.8% VL >  "
10-21-06 CD4 285 @21.9% VL >  "
  Atripla started 12-01-2006
01-08-07 CD4 429 @26.8% VL 1872!
05-08-07 CD4 478 @28.1% VL 740
08-03-07 CD4 509 @31.8% VL 370
11-06-07 CD4 570 @30.0% VL 140
02-21-08 CD4 648 @32.4% VL 600
05-19-08 CD4 695 @33.1% VL < 48 undetectable!
08-21-08 CD4 725 @34.5%
11-11-08 CD4 672 @39.5%
02-11-09 CD4 773 @36.8%
05-11-09 CD4 615 @36.2%
08-19-09 CD4 770 @38.5%
11-19-09 CD4 944 @33.7%
02-17-10 CD4 678 @39.9%  
06-03-10 CD4 768 @34.9%
09-21-10 CD4 685 @40.3%
01-10-11 CD4 908 @36.3%
05-23-11 CD4 846 @36.8% VL 80
02-13-12 CD4 911 @41.4% VL<20
You must be the change you want to see in the world.  Mahatma Gandhi

Offline Andy Velez

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Re: HELP! How could I have gone From HIV+ to AIDS Overnight? Scared!
« Reply #22 on: February 20, 2007, 04:32:25 PM »
OK, Wes.

First of all, you're not going to fall through a black hole. Even if it feels like that's happening right now.

Given the news you're dealing with, it's totally understandable how you're feeling. I'm glad you can come here and vent.

Wesley, who's available to you for medical care? Maybe the most important thing in your health arsenal is to have a doctor whom you have faith in and whom you can work together with as partners to keep you well.

Make yourself a cuppa tea or something healthy and satisfying. Bit by bit this will get dealt with.

Really.

Keep us posted on what's going on. We're listening and we care what happens to you.

Cheers,   
Andy Velez

Offline Boo Radley

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Re: HELP! How could I have gone From HIV+ to AIDS Overnight? Scared!
« Reply #23 on: February 20, 2007, 04:58:39 PM »
Wesley,

As others have said, what matters is your current state of health and the desirability of having blood work another time before deciding to start HAART.   By definition I also have AIDS because my CD4 count was 169 in October, 2004.  A definition of AIDS based solely on a CD4 count <200 is a "convenient" way of saying you need to watch what's happening with your body and HIV.  If you haven't had any other symptoms it would appear your immune system is still strong enough to hold off infections but no one can tell at exactly what CD4 count your immune response might be compromised.   Get blood work done again before deciding to start meds.   What is your viral load?

Take some deep breaths, try to relax, tell yourself you will be all right and believe it.  If you need to start HAART you seem to be well adjusted to the idea of beginning.  You're going to be OK one way or another.  You're at one of the most difficult stages some of us go through with HIV, having an unacceptably low CD4 count but being otherwise healthy.  You know the other shoe could drop any day and a sniffle or sneeze seems ominous. 

I wish you the best of luck and hope your CD4 count is a blip and the next test is much better. 

As much as we all argue around here I think we try to support each other when the XXXX hits the fan for another member.   

Boo

If you never have had an OI with less than a 200 CD4, you don't meet the definition of AIDS.

Sorry to contradict you, Rod, but the CDC definition of AIDS now includes the single symptom of cd4s <200 -- it used to be cd4<200 and an OI but the definition was changed to reflect the fact that people at that stage of infection, with a baseline cd4<200, need to start HAART as soon as possible or the likelihood of an AIDS-defining illness occurring within varying time frames is probable.

Boo

String up every aristocrat!
Out with the priests and let them live on their fat!





Everything I do, say, think, excrete, secrete, exude, ooze, or write © 2007 Sweet Old Boo, Inc.

Offline dtwpuck

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Re: HELP! How could I have gone From HIV+ to AIDS Overnight? Scared!
« Reply #24 on: February 20, 2007, 05:12:32 PM »
Wesley,
This really sucks.  I am really sorry you have to deal with this so soon. 

I've always been told not to put too much credence in the CD4 count because they fluctuate so much.  But it's hard not to.  Really hard.

Right now you are dealing with a lot of difficult feelings.  Take a deep breath.  Try to remain calm so you don't make any decisions out of panic.  (not that I think you will)....

You are still OK.   You've received some bad news, but this is bad news that you can manage.  You will probably have to go on meds, and that's not so much fun, but many of us are, and only some of us are crazier because of it.    :-)

Sweet man, try to find someone to talk to, who will listen to you and let you vent.  Don't stop crying if you feel like crying.  You will get past it if you let yourself feel.

Many hugs,
Scott   
Floating through the void in the caress of two giant pink lobsters named Esmerelda and Keith.

Offline Longislander

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Re: HELP! How could I have gone From HIV+ to AIDS Overnight? Scared!
« Reply #25 on: February 20, 2007, 05:25:40 PM »
Wesley, wow , man this does suck. Go ahead and cry, and scream, and yell all you want. Then try to breathe deeply and relax. If the nurse will get you in to be redrawn tomorrow, you'll want to be a little less stressed.

Try to convince yourself this is a lab error, until you know differently. Your % and VL are pretty good. I don't know how long it takes to get your usual results, but mine only take 5 days. See if they can put a rush on it.

You were ready to start meds anyway. Perhaps you can get the script filled and start tomorrow nite, even while waiting for the results of the redraw. It would probably help ease your mind a little bit.

Let your weekend visitors know you're a little down, and let them help you.

If I were closer I'd come give you some hugs, and maybe, maybe take a few punches from you to let out the steam ;)

See if you can't find some friends down there to hold onto. Until this is cleared up, we're all here for you. You know how to reach me if you want to talk.

Me



infected 10/05 diagnosed 12-05
2/06   379/57000                    6/07 372/30500 25%   4/09 640/U/32% 
5/06   ?? /37000                     8/07 491/55000/24%    9/09 913/U/39%
8/06   349/9500 25%              11/07 515/68000/24     2/10 845/U/38%
9/06   507/16,000 30% !          2/08  516/116k/22%    7/10 906/80/39%
12/06 398/29000 26%             Start Atripla 3/08
3/07   402/80,000 29%            4/08  485/undet!/27
4/07   507/35,000 25%            7/08 625/UD/34%
                                                 11/08 684/U/36%

Offline poet

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Re: HELP! How could I have gone From HIV+ to AIDS Overnight? Scared!
« Reply #26 on: February 20, 2007, 05:28:57 PM »
Wesley, it doesn't pass the sniff test to me, the cd4's dropping that far for no reason.  Having had off numbers myself because the technician forgot to shake the vials, I would assume, quite honestly, that the count is wrong, either not yours or the person couldn't count that day. 

I don't understand why, that said, you can't access your doctor today since what you need is a simple blood draw for your cd4's if not viral load, not access to your doctor.  If your doctor's office can't see you, is there a company which you can use in Austin, given your health insurance, etc.?  You wouldn't need an appointment and the sooner you get in, the sooner the results come back.  I will p.m. you as well.  Best, Win

Let me edit this post to add, for anyone new to the forums and new to the information here that we all need to focus on the long term pattern and not the blips, whether up or down.  Think of your results as numbers you put on a graph.  It's exactly like how we need to live our lives, with the bad days and the good days.  It's exactly like the stock market, with stocks moving up one day, down the next, sometimes in leaps and drops, other times incrementally. Matt is, blessedly, our science expert here, so read his post above. 
« Last Edit: February 20, 2007, 05:37:59 PM by poet »
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 AustinWesley

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Re: HELP! How could I have gone From HIV+ to AIDS Overnight? Scared!
« Reply #27 on: February 20, 2007, 05:48:02 PM »
Hey Everyone,

Thanks so much.  Just for the record I do know when I was infected and that's a non issue unless somehow HIV tests have been inaccurate multiple times.

After a date rape, minus the date, 3 years ago I had monthly tests for an entire year to be sure I didn't have it.  That was in 2003 before moving to Austin.

Here I've had 2 relationships where we both were tested together and always negative.   Then I met the sociopath that gave this to me last year an went through the seroconversion.   I don't need any lectures on how I'm half responsible etc.   I'm well aware of my own stupidity for trusting that sick fuck.

So, I do know my history.  Let's not go there cause that one is stressing me out and I know people are trying to help.  And I also know that many don't know who, when or how and it really doesn't matter.   I think it's clear that I've admitted many faults and showed an obvious lack of good judgement.   One of my shortcomings isn't a faulty memory.

Things I've done:

Rationally and calmly explained it to both my sister and mom so as not to panic them.   Now I have Aids!   Can only imagine what is going through their minds, but lucky my family sticks together cause I really feel for people who don't have that support.

The doctor is out today.   They were supposed to call me back, but the nurse didn't and wanted the doctor to review this bizarre drop.  

I WILL have complete tests drawn again before any meds for my own sanity and so I can share them here for others who are going through this nightmare.

I don't have a huge fear about meds anymore and that was previously discussed and I'd planned to start after this set of labs regardless of the outcome.   Apprehensive yes.   With an AIDS diagnosis, much more worried do to the fact that none of us know how we will react.

So, I spoke with the other nurse who's supposed to go check the actual printed numbers to confirm the 139 and 30% which don't add up to me.   CD4 plumets and % jumps way up?  
Even she doesn't feel this is usual so she's going down to confirm to make sure someone didn't type it into the computer wrong because she didn't think it seemed correct.   I will wait for her call.

Regardless, I will have complete thing redone hopefully tomorrow morning or afternoon.   I still plan to take meds and just hope to the almighty Buddha that I don't have to add a whole cornucopia of other items to Atripla.

I had a genotype run right off the bat.  It's all clear.  Sometimes those don't really mean crap.    

I have had a wide range of emotions today.  

Had I started meds right off I wouldn't have been in this mess today.   Maybe a different one, but I can't think of that right now.

I'm LIVID that because I didn't listen to myself to start meds I will forever now be labeled with AIDS.    It's not like I care about that stupid label, but so many others do and I guess I'll just have to educate more people on that as well.

Well, I guess I've earned my ranks now for the Aids Club or do I have to have Aids for a set period of time?  Sorry, I'm angry and pissed at myself and no one here.  

So, the one gal is supposed to call me back to indeed confirm I technically have AIDS.

I am reading all of your responses here and appreciate each and every one of them.   No one should ever have to go through what any of us here have to.   I realize I'm very lucky to have some of the things on my side that I do.   I think maybe I have a fear that all of that could evaporate overnight like my T cells.

Much love,

Wesley





Diag. 3/06  Infected aprx. 2 mo. Prior
Date        CD4   %      VL
4/6/06     627    32    36,500     NO MEDS YET!
6/7/06     409    27    36,100
8/23/06   408    25     22,300
1/2/07     354    23     28,700
2/9/07     139    30     23,000  Hep A Vaccine same day???
2/21/07   274    26     18,500 
3/3/07    RX of Truvada/Sustiva Started.
4/5/07    321     27      Undectable 1st mo.  
5/16/07  383     28    Undectable 2nd mo.
8/10/07  422     32   UD <48 on new scale!

Offline Longislander

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Re: HELP! How could I have gone From HIV+ to AIDS Overnight? Scared!
« Reply #28 on: February 20, 2007, 05:52:19 PM »
Wesley, if you don't hear from her by 15 minutes prior to the office closing, call her yourself, ok?
infected 10/05 diagnosed 12-05
2/06   379/57000                    6/07 372/30500 25%   4/09 640/U/32% 
5/06   ?? /37000                     8/07 491/55000/24%    9/09 913/U/39%
8/06   349/9500 25%              11/07 515/68000/24     2/10 845/U/38%
9/06   507/16,000 30% !          2/08  516/116k/22%    7/10 906/80/39%
12/06 398/29000 26%             Start Atripla 3/08
3/07   402/80,000 29%            4/08  485/undet!/27
4/07   507/35,000 25%            7/08 625/UD/34%
                                                 11/08 684/U/36%

Offline DanielMark

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Re: HELP! How could I have gone From HIV+ to AIDS Overnight? Scared!
« Reply #29 on: February 20, 2007, 05:52:21 PM »
First things first Wesley,

(((HUG)))

My suggestion is that you ASSUME nothing and wait till you can check out the facts. A mind under duress will come up with all kinds of frightening stuff. That's the last thing you need to be doing to yourself right now.

Daniel

MEDS: REYATAZ & KIVEXA (SINCE AUG 2008)

MAY 2000 LAB RESULTS: CD4 678
VL STILL UNDETECTABLE

DIAGNOSED IN 1988

Offline Cliff

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Re: HELP! How could I have gone From HIV+ to AIDS Overnight? Scared!
« Reply #30 on: February 20, 2007, 06:03:26 PM »
One lab result of 139 (especially with a % of 30) is NOT AIDS.  AIDS is confirmed counts of below 200 AND and OI, such as:

Pneumocystis carinii pneumonia
Toxoplasmosis
Tuberculosis
Extreme weight loss and wasting
Meningitis and other brain infections
Fungal infections
Malignancies such as lymphoma, cervical cancer, and
Kaposi's Sarcoma

Blips happen.  Your % (and lack of an OI) suggest that this is either a blip or a lab error.  But not AIDS.  Start meds if it will bring you comfort, but giving yourself a label, that isn't warranted, probably isn't going to make this situation any easier.

Online Miss Philicia

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Re: HELP! How could I have gone From HIV+ to AIDS Overnight? Scared!
« Reply #31 on: February 20, 2007, 06:07:08 PM »
Err.. sorry I missed this thread earlier Wesley.  I can't add much more that's not been said.  Could be an error, might be right.  Then you go on meds and your numbers will go up AND YOU WILL BE MUCH BETTER.

I'd tell you to try and maintain an sense of calm but I know that's not realistic.  But still try to -- get some sleeping pills for the week.

Good luck.
"Iíve slept with enough men to know that Iím not gay"

Offline Ihavehope

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Re: HELP! How could I have gone From HIV+ to AIDS Overnight? Scared!
« Reply #32 on: February 20, 2007, 06:09:01 PM »
If you are going to get another lab test tomorrow then promise yourself that you will relax and not indulge in the "what if" and "OMG, I have AIDS". Rent some movies, ask your siblings to spend more time with you, exercise or do whatever can distract you from this. If it is going to bring you peace of mind talk to your doctor about starting meds or you can wait to see your new lab results. It sounds to me that you have done your share of thinking about meds so when you take the first pill think you will begin to battle the virus and your numbers will gradually increase. Distraction is key otherwise you can drive yourself mental. I went through this process alone and scared, you have the support of a great family so take advantage of this.
Infected: April 2005
12/6/06 - Diagnosed HIV positive
12/19/06 - CD4 = 240  22% VL = 26,300
1/4/07 - CD4 = 200 16% VL = ?
2/9/07 = Started Kaletra/Truvada
3/13/07 = CD4 = 386 22% VL ?

Offline StrongGuy

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Re: HELP! How could I have gone From HIV+ to AIDS Overnight? Scared!
« Reply #33 on: February 20, 2007, 06:10:17 PM »
You've received some great advice and all I would add is even if you don't feel like it, it might help in a small way to hang out with a friend or family and watch a movie or go out to eat. Of course it's still going to be on your mind but sometimes getting out and moving can help.

Oprah has a saying I think about a lot when I get worried that says "what you focus on expands." I know it's impossible not to focus on this right now because I remember like yesterday the anxiety you are having - but for me chatting with a friend or just getting out used to help a little bit.

You know were here when ya need us just reach out if ya wanna talk...

Peace...
Mike :)
"Get your medical advice from Doctors or medical professionals who you trust and know your history."

"Beware of the fortune teller doom and gloomers who seek to bring you down and are only looking for company, purpose and validation - not your best physical/mental interests."

"You know you all are saying that this is incurable. When the real thing you should be saying is it's not curable at the present time' because as we know, the great strides we've made in medicine." - Elizabeth Edwards

Offline gemini20

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Re: HELP! How could I have gone From HIV+ to AIDS Overnight? Scared!
« Reply #34 on: February 20, 2007, 06:10:55 PM »
Wesley,

Sorry that you're freaking out about the drop in CD4 numbers but like others have said you need to take a deep breath for a moment and focus on how your health actually is in reality. And in addition 30% is certainly not a level that would give me any cause for concern, it's three times what I have currently!

Giving so much energy and power to the 'AIDS' label is not conducive to remaining well and healthy. It's easily done though because of the <200 definition you have in the USA - if you lived over here in the UK you wouldn't have 'AIDS' unless you had an OI, so maybe that is something to think about.

I certainly went through huge anxiety when my counts first dropped below 200, thought it was the beginning of the end - how wrong I was - but so easy to do when someone somewhere has decreed that a certain number means something seemingly so dramatic!

I've learnt from experience that the numbers more often than not do not bear any relation to how I'm feeling. For example back in Feb 2002 my counts fell below 200 but by Sept 2003 my CD4 count was back up at 299, all without any meds and even having got bacterial pneumonia in that period.

It's perfectly understandable to freak out, be angry and upset by these circumstances but all I can offer from my experience is the perspective that says it's not the end of the world (even though it feels like it); mistakes can happen; and if it's the reality then you'll find your inner strength to deal with that.

Best wishes,

Emma
Diagnosed 11th September 1991
Current CD4 count 484 (26%); viral load undetectable (December 2011).
Restarting boosted Prezista 08/04/11

Offline bear60

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Re: HELP! How could I have gone From HIV+ to AIDS Overnight? Scared!
« Reply #35 on: February 20, 2007, 06:13:01 PM »
Wesley....
You get a big {{{{{{{{{HUG)))))))))))) from me too. Keep calm.
Poz Bear Type in Philadelphia

020501

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Re: HELP! How could I have gone From HIV+ to AIDS Overnight? Scared!
« Reply #36 on: February 20, 2007, 06:14:04 PM »
being one of the new guys around here and just beginning to learn about this stuff myself, i honestly dont have any advice to offer from the medical side and granted i dont know you like everyone else around here does, but we're all on the same team and i'm rooting for you just as hard as anyone.  try not to worry about it and take your mind somewhere else.  nearly impossible to do, i know, but stressing over it isn't getting you anywhere, especially when its just a wack lab job.   ;)  hang in there bud.

Offline jkinatl2

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Re: HELP! How could I have gone From HIV+ to AIDS Overnight? Scared!
« Reply #37 on: February 20, 2007, 06:15:26 PM »
I was diagnosed with AIDS in 1994. Hard to sustain anxiety for so long, ya know :)

"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

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Offline Ihavehope

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Re: HELP! How could I have gone From HIV+ to AIDS Overnight? Scared!
« Reply #38 on: February 20, 2007, 06:16:37 PM »
I was told by my doctor that they actually have someone sit down and count all the CD4 counts you have in a test tube one by one. Is this true?

Maybe the guy/girl who read the CD4 cells didn't bring her glasses into work that day or had a hangover. Could happen.
Infected: April 2005
12/6/06 - Diagnosed HIV positive
12/19/06 - CD4 = 240  22% VL = 26,300
1/4/07 - CD4 = 200 16% VL = ?
2/9/07 = Started Kaletra/Truvada
3/13/07 = CD4 = 386 22% VL ?

Offline thirtysomething

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Re: HELP! How could I have gone From HIV+ to AIDS Overnight? Scared!
« Reply #39 on: February 20, 2007, 06:32:25 PM »
Dude, you need to first stop saying that you have AIDS. You are torturing yourself.  Your percent is very high and I believe it's definitely lab fuckup. From what I have read in this 1 year, 30% CD4 = couple of hundred CD4 T-cells.

Go in for another bloodwork and if it turns out it's not officially AIDS, smack the nurse and change the doctor asap!






Offline whizzer

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Re: HELP! How could I have gone From HIV+ to AIDS Overnight? Scared!
« Reply #40 on: February 20, 2007, 06:34:53 PM »
I must disagree with Cliff.

In 1987 the  CDC published it's defining elements of the AIDS diagnosis (MMWR1987 36 supp 1S).  This one was based solely on clinical presentation, that is, what OIs you had.

In 1993, the CDC updated it's definition (MMWR 41 RR-17) to include ANYONE with a CD4 count below 200, OR a CD4 percent at or below 14, and ALL HIV infected persons with what they term an "AIDS defining illness".  To see this list, use this link

http://www.thebody.com/encyclo/aids.html

So there you have it.  If you are HIV positive and have had PCP, regardless of your CD4 count, you have AIDS.  Same with esophageal candidiasis, histoplasmosis,  esophageal candidiasis, and many, many more.  If you are HIV positive and have any one of these OIs, regardless of your CD4 count, you have AIDS.

I personally prefer the new staging method of describing your disease state, but the old AIDS term is still there.  And if you interpret it correctly, many of us here who are doing quite well meet the definition of AIDS.


That being said, WES, your CD4 number and percent just don't match up, and I suspect a lab error.  Now, their error may not be in the CD4 number, but in the percent, but that is unlikely, since the absolute CD4 count is calculated using the percent.  The only way they could match up in your case right now is if your WBC (white count) is very low.  I would do a quick new set of labs, not because it is an emergency, but for your own piece of mind. 

When you get your lab work done, have them fax you the lab report.  All the numbers of everything will be there for you to see.
Sometimes folks get in a hurry and read them wrong.

-Whiz


Offline J.R.E.

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Re: HELP! How could I have gone From HIV+ to AIDS Overnight? Scared!
« Reply #41 on: February 20, 2007, 06:54:30 PM »
Hey Mr Austin



First, get a retest, labs make mistakes, and CD4 does bounce around too, with a % of 30 a mix up/odd result for the day seems likely (CD4 of 139 would normally be a CD4 % of about 8%)

Second, 1-3% of people need treatment real soon, like within a year, this everyone gets 10 year before meds thing is a fib, docs should be more honest


Take care

-



I would also get a retest as Matt has suggested.



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 8/2514,  t-cells are at 402, Viral load <40

 Current % is at 11%

  
 62 years young.

Offline RapidRod

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Re: HELP! How could I have gone From HIV+ to AIDS Overnight? Scared!
« Reply #42 on: February 20, 2007, 07:26:22 PM »
Boo, it states in the 2005 surveillance report if the CD4 is less than 200 with a % of less than 14. He has a % of 30. He needs to retest.

Offline ga1964

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Re: HELP! How could I have gone From HIV+ to AIDS Overnight? Scared!
« Reply #43 on: February 20, 2007, 08:03:36 PM »
Hi Wesley,

I'm new here and can't offer any advice as to your numbers, but the feelings you have expressed took me back to Dec. when I was told that I had tested HIV+ and due to my CD4 being below 200 I had AIDS.  My doctor put me on Atripla and I am also taking Bactim untill my CD4 count raises above 200 for atleast 6 months.  I'm trying to learn all the numbers and % and what they mean to my health, it's still very confusing to me.  I know the fears you are feeling and wish I could say something to ease them.  The best advice I got was to try to calm myself and know that there were others hear that are here for you.  Just knowing that someone cared helped me alot.

David.

Offline Peter6836

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Re: HELP! How could I have gone From HIV+ to AIDS Overnight? Scared!
« Reply #44 on: February 20, 2007, 08:29:49 PM »
Wesley,
I do not know as much as many others here. What I do know is that last December I tested negative this November 11 months later my CD4 count was 106.
When i went on the Atripla it made a world of difference. Keep positive, relax, stress is not a good thing.  Spend time with your wonderful family, just because you are catagorized with AIDS today does not mean that your CD4 count cant go up and you will not have AIDS a few months from now.
God Bless you, I will remember you in my prayers.
Peter

Offline Londonguy

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Re: HELP! How could I have gone From HIV+ to AIDS Overnight? Scared!
« Reply #45 on: February 20, 2007, 08:39:29 PM »
I know it's hard, honestly I do.  I was in exactly the same position you were last summer when I got enormously hung up on the AIDS definition I had just barely acquired.  It did my head in and I couldn't believe it had happened so quickly.   And it happened again a few weeks ago when I saw how low my CD4 had gone and how annoyed I was at one particular doctor who intervened from me taking meds at the last minute last summer because she thought I would rebound and I never did.

But you know what?  The sky didn't cave in, I didn't suddenly get over-run with OIs or collapse with exhaustion.  I carried on as normal,albeit with Septrin, and nothing has happened.  Please do not get hung on on that label, it doesn't do any good.  I've already said that I don't believe that the permanent label does anyone any good mentally (I understand some people need it for money purposes), and as far as I'm concerned, when my CD4 goes back above 200 I'm no longer going to think of myself as having AIDS, it makes it easier for me.  

But yes, get retested because the % and absolute count don't match up.  You really need to just take a deep breath and realise that nothing is going to happen between now and the time you get your next results.

Offline Lis

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Re: HELP! How could I have gone From HIV+ to AIDS Overnight? Scared!
« Reply #46 on: February 20, 2007, 08:46:17 PM »
Im sorry that your freaking out... that is the nature of this crap.. start the meds... and see what happens.. I hope that your results are better then mine have been...  remember... the more you stress, the more stress you put on your body....  find some way to calm your self a tad...

lisbeth
poz 1986....

Online Miss Philicia

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Re: HELP! How could I have gone From HIV+ to AIDS Overnight? Scared!
« Reply #47 on: February 20, 2007, 08:57:33 PM »
When I was diagnosed in '93 with 184 cd4's my doctor did not scare me with the word "AIDS" -- next test it was something like 223.
"Iíve slept with enough men to know that Iím not gay"

Offline bocker3

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Re: HELP! How could I have gone From HIV+ to AIDS Overnight? Scared!
« Reply #48 on: February 20, 2007, 09:59:11 PM »
Wesley,

I know how crazy I can get around shit like this, so the best advice I can give is to remember to breathe and let your feelings happen.  Do remember however that whatever your T-cells may be, you felt healthy yesterday and you are still healthy today, so do whatever follow up is needed and then figure out the next steps.  I think a retest is very important (but you know that).  If the absolute CD4 goes back up, great -- if not -- just move forward and lean on folks here.  Try not to focus on the AIDS label (easier said then done, I know), stress can also lower your CD4s, so try whatever you can to relax a bit before your next draw.

For clarity -- someone said that the absolute count is based on the %age and I believe that is backwards - although I've never done t-cell testing - so I could be wrong, I'm pretty sure that it is done with Flow Cytometry which, I believe, counts the t-cells.  The abs count can move alot because of the number of lymphocytes that you have can change, but the CD4% tends to remain more stable because it is a combination of the total lymphocytes and the absolute number of CD4s.  Hope that didn't muddy it up.   :-\

At any rate -- my thoughts are with you -- I hope you've heard back from the nurse about a possible transcription error (maybe 319 vs 139??).

Hugs,
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 jkinatl2

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Re: HELP! How could I have gone From HIV+ to AIDS Overnight? Scared!
« Reply #49 on: February 20, 2007, 10:29:58 PM »
Wesley, if you don't learn how to cope with the stress better, you will not last long with HIV.

Seriously. AIDS is just a statistical label. There is NO DIFFERENCE between you right now and a week ago, two, four, seven. I worry sometimes that this forum, well-meaning perhaps, allows and encourages hystrionics in the guise of support.

You will have to deal with this crap for decades. You simply cannot continue this level of anxiety. Above all else, it is bad for your health.




"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

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