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Author Topic: Found out 2 days ago  (Read 5329 times)

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Offline IAmHappy

  • Member
  • Posts: 13
Found out 2 days ago
« on: August 10, 2010, 01:46:39 PM »
Hey guys,

I accidently found this forum while googling for HIV-related issues and decided to sign up.

I had recently found out (gradually) that I have HIV-1. I was a bit shocked when I found out because I have always been safe and can't even tell when or how I caught it. I'm not that sexually active (twice a year) and have only been active for 3 years (always safe). I read about HIV-1 and found out that I can live normally as long as I take my medication religiously.
I was relieved till I found out my CD4 count is 162 (8%) which means that I have AIDS. I was crushed for the second time because of knowing I was so far into the disease.

Today, I also found out I'm positive for HIV-2...third time I was crushed, because I read that HIV-2 tends to be less responsive to drugs. I also switched to another doctor today because I wasn't comfortable with the doctor I had. The one I saw today was really nice and comforting and explained to me that HIV-2 is only theortically not as responsive to current drugs as HIV-1 and that she has patients with HIV-2 that respond better to medications than patients with HIV-1, and that I shouldn't even be worrying about it.

So far, only my dad, my sister, my brother, and 2 very close friends I know I can trust know. They have been very supportive and positive about it and convinced that I can live to be 90 if I just stay positive about it. I decided I won't tell my mother because she has health issues and I'm afraid it would be too much for her to handle. I probably won't tell anyone else because of the way some people can react..it's still too early anyway.

What I'm worried about is that I'm taking this way too lightly. I haven't cried, I'm not feeling down, and I seem to be fine most of the time. I feel like I might one day snap and have everything come down at the same time. Is this normal to feel FINE and numb about it?

I start Atripla and Bactrim tomorrow and was wondering if anyone here has any experience with HIV-2. If not, anyone who started with a low CD4 count who can help me cope with this better. My viral load test hasn't come out yet but I will be sure to share it here once I have the numbers.

Anything I should look out for while taking Atripla? (foods to avoid that my doctor probably forgot to mention?)

Oh! one more thing. I tested negative for TB and my chest X-ray showed that my lungs were clear (for PCP). I'm free of any infectious diseases except for my ulcerative colitis that is unrelated to my HIV issue. I'm only having very mild fevers that go away within the hour and interrupted sleep. Is that a good sign?

Thanks a lot for reading this and for any replies I'm going to get.

Offline Realist

  • Member
  • Posts: 162
    • NotDownNotOut's Blog
Re: Found out 2 days ago
« Reply #1 on: August 10, 2010, 02:37:35 PM »
Hi Happy,

You've found the right place for support and answers to questions you have about HIV from people who are also positive.

I can't help with your questions on HIV-2 (someone else will no doubt chip in though) but I had a similar experience to you - finding out and it being totally unexpected (five months ago) and similarly my first CD4 result caused me great concern as it was (as I perceived) extremely low and I struggled to understand how it could be.

I went through the first few weeks thinking I was in control, didn't become an emotional wreck and that I was A OK. Slowly I did start to get a bit down whilst processing my diagnose and realised that this was normal but I am back to normal now. The best advice I can give to someone newly diagnosed is to learn about the condition and gain as much meaningful knowledge as possible. You've done the right thing changing doctors if you weren't comfortable and this should be your first step to taking control.

 
23/02/10 Tests confirmed
25/02/10 13100 220 24%
12/03/10 19800 372 19%
26/03/10 Atripla
30/04/10 58 286 23%
28/05/10 45 222 21%
25/06/10 UD 301 23%
24/09/10 UD 283 22%
01/12/10 UD 319 23%
11/03/11 UD 293 28%
10/06/11 UD 423 24%
23/08/11 UD 389 26%
28/02/11 UD 315 34%

I blogged it all http://notdownnotout.blogspot.com

Offline AaronbytheC

  • Member
  • Posts: 116
Re: Found out 2 days ago
« Reply #2 on: August 10, 2010, 06:33:14 PM »
I was numb too, I think it is normal for some of us.  While some need to grieve with tears and become an emotional wreck others simply compartmentalize.  From the first day I found out I was poz I went into survival mode...  No tears, no emotion, I went online and started to educate myself.  I found this site and some great people too  :P 

Oh, my emotional train wreck came two months later!  ;D

Welcome to the board, there is a wealth of knowledge here for you.
04/2012 CD4 721 / 29% / VL UD
02/2011 UNDETECTABLE!
12/2010 CD4 587 / 24% / VL 210
11/2010 Started Atripla
10/2010 CD4 420 / 18% / VL 13,500
09/2010 CD4 541 / 17% / VL 10,500
08/2010 CD4 498 / 18% / VL Not Taken
07/2010 CD4 307 / 18% / VL 9,500
06/2010 Confirmed Poz
03/2010 Infected
06/2009 Neg

Offline littleprince

  • Member
  • Posts: 201
Re: Found out 2 days ago
« Reply #3 on: August 10, 2010, 07:09:14 PM »
Welcome to the forum.

Quote
What I'm worried about is that I'm taking this way too lightly. I haven't cried, I'm not feeling down, and I seem to be fine most of the time. I feel like I might one day snap and have everything come down at the same time. Is this normal to feel FINE and numb about it?

There's a difference between not letting HIV rule you and taking it too lightly. I wouldn't say that you are taking it lightly. You have found a good Dr, are getting the treatment you need, and are educating yourself on HIV. Some people focus on the disease while others focus on getting better and living a normal life. The second option always has a better outcome.

It didn't hit me that hard when I was given the HIV result. I think it's gust the way my brain works. I figure that there is nothing I can do about it now so I should just put my energy into getting better and getting on with life. I did have a bit of a cry the first few days but snapped out of it.



Quote
I was relieved till I found out my CD4 count is 162 (8%) which means that I have AIDS. I was crushed for the second time because of knowing I was so far into the disease.

I know the feeling of getting the second blow when you are given the AIDS diagnosis. Your numbers are actually ok. A little on the low side but not terrible. Within a short time you should be off the bactrim. My first CD4 count was <10. That gives you a good kick in the guts.


Quote
If not, anyone who started with a low CD4 count who can help me cope with this better

You shouldn't have any major issues with treatment relating to starting with a CD4 of 160. There is a condition called IRS which affects people with an increasing CD4 level but this usually is only after you start treatment straight after having an opportunistic infection. You're more likely to just have minor skin problems which seem to affect people more with lower CD4.


Quote
I'm only having very mild fevers that go away within the hour

Fevers are usually a sign that something is going on in your body. It may just be the HIV but could be related to something else. If you notice any other symptoms or symptoms that are getting worse you should mention them to you HIV Dr no matter how small they may seem. In my case I was starting to feel a little more tired and had a slight cough over a few months. Ended up being PCP.





Offline wtfimpoz

  • Member
  • Posts: 418
  • Let's make biscuits!
Re: Found out 2 days ago
« Reply #4 on: August 10, 2010, 10:34:37 PM »
Everyone says it, but its true: this isn't a death sentence.  You'll still be around for a long, long, LONG time.  Don't worry about the numbness, trust me, it'll pass when you're ready for it to pass.  I think I was unresponsive for a week, then I spent the next three sobbing nonstop.  I'm entering my third month of dealing with this, and I can tell you that you WILL begin to feel better within a short time. 

Getting an HIV diagnosis is a horrible shock to everyone.  Someone on here once said that the only thread which unites those who test positive is that none of us ever thought it would happen.  Almost no one deliberately puts themself in a position where they think they'll contract the disease.  You're not the first person to think that "being safe" would protect them from the virus, and I'm sure you won't be the last.  Take this as an opportunity to understand that all people, from all walks of life, can get this.  Its just a virus, and having it doesn't say anything about you.   It doesn't define you, or make any kind of valid statement about you.

You sound like you've got a good support network in front of you.  Except for a few very close peoeople, I'm still "closeted" about my status myself, and from what I can gather, thats usually the best option for those of us who are newly infected.  It's uncomfortbale to keep such a big secret bottled up, but trust me, you'll be glad you did once things calm down.  The time to be open about this is not when you're still learning to accept it.

Congrats on being neg. for other diseases, and I wouldn't worry too much about the second HIV strain.  If your doc says you're gonna be fine, you're gonna be fine.  There are so many factors that define reactions to HIV treatment, the mere presence of a second strain isn't going to make or break anyone.

Hang in there and keep us posted.  I'm due to start Atripla soon and would like to hear about your experiences.  I'd say "good luck", but the truth is you don't need it.  You're gonna be fine.
09/01/2009-neg
mid april, 2010, "flu like illness".
06/01/2010-weakly reactive ELISA, indeterminant WB
06/06/2010-reactive ELISA, confirmed positive.

DATE       CD4     %     VL
07/15/10  423     33    88k
08/28/10  489     19    189k
09/06/10-Started ATRIPLA
09/15/10  420     38    1400
11/21/10  517     25    51

Offline IAmHappy

  • Member
  • Posts: 13
Re: Found out 2 days ago
« Reply #5 on: September 07, 2010, 09:22:26 AM »
Thanks a lot for the kind words!

Offline james262

  • Member
  • Posts: 3
Re: Found out 2 days ago
« Reply #6 on: September 07, 2010, 08:22:34 PM »
well you're handling it quite well i think. better than i did (am)

i just found out a week and a half ago (also totally shocked... i've only slept with 2 people in my life and thought i was always safe..)

i was hysterical when my doctor told me... actually she didn't even tell me. she just said "i'm so sorry" and gave me a real big hug (my doc is kind of like a family friend)... and i just bawled and bawled and bawled... and then i just stopped... and was numb for the rest of the day... it was a confusing, blurry haze.

and then i was a crying mess for the next 3 days.
and then the fourth day i started to be a little more okay... i didn't cry all day.  but my doc called that night with my counts.. my CD4 was 285 (which i thought was terrible at the time... i know its not great... but its not the worst, either), but what really kicked me in the gut was that they tested my resistance to 22 different ARV's and i was resistant to all of them except one combination (saquinovir and retinovir) - so i'll likely start on that when i meet with my HIV specialist in 2 weeks.

but i dont really know what most of that means...

While i was that crying mess though, i was keeping it to myself... after i told some close friends and my family... and they didn't completely shun me, i got better.  So, for me, that was all i really needed i think.  I'm okay now

Offline Hellraiser

  • Member
  • Posts: 4,136
  • Semi-misanthropic
Re: Found out 2 days ago
« Reply #7 on: September 08, 2010, 02:02:06 AM »
i know its not great... but its not the worst, either), but what really kicked me in the gut was that they tested my resistance to 22 different ARV's and i was resistant to all of them except one combination (saquinovir and retinovir) - so i'll likely start on that when i meet with my HIV specialist in 2 weeks.

Are you absolutely certain you're resistant to all of that?  You'd be the first person I've heard of with resistances to almost everything.

Offline jkinatl2

  • Member
  • Posts: 6,007
  • Doo. Dah. Dipp-ity.
Re: Found out 2 days ago
« Reply #8 on: September 08, 2010, 06:49:34 AM »
Shit, my adherence has been crap and I am still at least partially susceptible to non nukes, protease inhibitors, and the like. And thats after almost 18 years of being poz.

But hey, people's mileage varies.
"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 IAmHappy

  • Member
  • Posts: 13
Re: Found out 2 days ago
« Reply #9 on: September 08, 2010, 12:09:31 PM »
well you're handling it quite well i think. better than i did (am)

i just found out a week and a half ago (also totally shocked... i've only slept with 2 people in my life and thought i was always safe..)

i was hysterical when my doctor told me... actually she didn't even tell me. she just said "i'm so sorry" and gave me a real big hug (my doc is kind of like a family friend)... and i just bawled and bawled and bawled... and then i just stopped... and was numb for the rest of the day... it was a confusing, blurry haze.

and then i was a crying mess for the next 3 days.
and then the fourth day i started to be a little more okay... i didn't cry all day.  but my doc called that night with my counts.. my CD4 was 285 (which i thought was terrible at the time... i know its not great... but its not the worst, either), but what really kicked me in the gut was that they tested my resistance to 22 different ARV's and i was resistant to all of them except one combination (saquinovir and retinovir) - so i'll likely start on that when i meet with my HIV specialist in 2 weeks.

but i dont really know what most of that means...

While i was that crying mess though, i was keeping it to myself... after i told some close friends and my family... and they didn't completely shun me, i got better.  So, for me, that was all i really needed i think.  I'm okay now

I guess we're kind of in the same boat.

I really don't know how I feel or if I'm okay with it or not. I still panic a little on the inside when I think about it every once in a while, but I still haven't really taken it the way I imagined I would.

I know this isn't much coming from a stranger on the internet, but if you ever need someone to talk to, I'd be happy to listen. Take care!

Offline kev

  • Member
  • Posts: 31
Re: Found out 2 days ago
« Reply #10 on: September 08, 2010, 07:46:49 PM »
Sorry to hear of your recent diagnosis. Welcome to the forums.This is the best site for information and has an awesome group of people who know what it is like to live with HIV.Sounds like you have a great attitude and some supportive friends. Keep us posted on how you are doing.

Offline onemoretime

  • Member
  • Posts: 142
Re: Found out 2 days ago
« Reply #11 on: September 11, 2010, 12:25:04 PM »
hi  you have a great attitude/  I went into shock for the firs tyear.  I cried the hour i was givine the news at the dr office in the hallway on the coutch./// lucly no one was arround.  that lasted 2 or 3 min then i went home and started learning more  about it  saw the id dr next morning and have been fine ever since/   I was off meds for the first year cuase i was 490/   been fine for 5 years now poz 7  years/   the worse thing for me is somtimes when i think aobut it too much i get depressed so try not to dwel too much.
08/04 diag 490 cd4 vl 50,000
10/25/05 436 50,513 hvb 1.1 billion
12/13/05 truvada sustiva
02/16/06 742 und, hpb 63,000
04/27/06 740 und hpb 60,000
01/05/07 458 und hvb und
03/08   470 undetectable still on atripla. Non smoking (chantex)
08/08 cd4 550 undetectable hiv, Hep B UND. Atripla
06/09  cd4 444, vl undetectable testo 130
09/09/09 CD4 687 46% UND  Testo 213 started androgel
10/12/09 cd4 682 46% und testo 597
01/12/10 cd4 842 48% und testo 434
041010 cd4 693  53% testo 492
100410 cd4 568 48% testo 523
012711 cd4 523 hcv 56 testo 596
083011 cd4 280 Hcv/HIV und
042912 cd4 158 hcv /hiv und, was on hep c for 11 months. do have ssdi filed and getting LTD
061912 cd4 151, bactrum, hep c and hiv und
071712 cd4 287 52% HIV HCV und
112012 cd4 520

Offline PozCAGuy

  • Member
  • Posts: 7
Re: Found out 2 days ago
« Reply #12 on: September 11, 2010, 01:34:52 PM »
I'm a new poster here but have been reading the forums for a little over 2-years now, since I was diagnosed.

As all have said, you have a great attitude and just need to keep yourself in the right frame of mind.


Offline peteb

  • Member
  • Posts: 202
Re: Found out 2 days ago
« Reply #13 on: September 13, 2010, 12:15:49 AM »
Sorry to hear about all you have gone thru you asked if anyone was under your numbers well I was 45 when I was  diagnosed with AIDS took atripla now my cell count is over 400 I use bactrim  (SP)also good luck hope things are going good for u

Offline mewithu

  • Member
  • Posts: 160
  • mewithu
Re: Found out 2 days ago
« Reply #14 on: September 13, 2010, 12:44:51 AM »
 You have found out in a good age as far as the progress that  the medical field has come with this disease. I got sick just on the edge of them having protease inhibitors is the only thing that saved my life. I had it a lot ruffer than most people. I had almost every oppurtunist infection at the same time and one that could have killed me if I hadn't had as good insurance as I did. So consider your self lucky in this day and age. Not to say I want you to have this disease but things are better now than when I got it AIDS that is. If you read my profile you will see a part of what I am talking about.
 Good luck with everything and 167 CD4 count is not that low now that you caught it in time that is. Everything should be alright if you follow your Docs advise and if you find later you don't like that doc you can get another Dr.

Jerry:)
1997 is when I found out, being deathly ill. I had to go to the hospital due to extreme headache and fever. I fell coma like,  two months later weighing 95 pounds and in extreme pain and awoke to knowledge of Pancreatis, Cryptococcal Meningitis, Thrush,Severe Diarea,  Wasting, PCP pneumonia. No eating, only through tpn. Very sick, I was lucky I had good insurance with the company I worked for. I was in the hospital for three months that time. 
(2010 Now doing OK cd4=210  VL= < 75)
I have become resistant to many nukes and non nukes, Now on Reyataz, , Combivir. Working well for me not too many side effects.  I have the wasting syndrome, Fatigue  . Hard to deal with but believe it or not I have been through worse. Three Pulmonary Embolism's in my life. 2012 520 t's <20 V load

Offline coolstone25

  • member
  • Member
  • Posts: 42
Re: Found out 2 days ago
« Reply #15 on: September 26, 2010, 07:29:42 AM »
Dear iamhappy,

Are you sure you are reading your labs right??????? You really would be the first case I would have heard, who has resistant genotypes to all meds except that one combo directly after infection without any meds currentlycurrently. Normally, the infection is caused by very few virions and the immune system response puts a pressure on the virus killing a lot of copies with antibodies produced by plasma cells and the virus rapidly undergoes selective pressure to mutate. The bottleneck after infection virtually ensures most med-resistant copies are destroyed(exceptions are noted only in clinical settings with occupational exposure and blood related infections or blood transfusions with high innoculum) and you should be ok with most other meds.

Anyway new meds and therapies are in the pipeline and many "futuristic" therapies have been set into clinical trials and are on the way. Its not going to be long before RNAi therapy, zinc finger nuclease modifiers, Histone deacetylase inhibitors and proviral excision recombinase therapy shall be available and in all probability, with good diet and exercise you shall lead a full balanced healthy lifestyle and you'll most likely die of old age.

Plenty of people here had knocked on deaths door and they are still alive and strong 20-30 yrs later.

 


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