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Author Topic: New diagnosis. New life... Scary...  (Read 3905 times)

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Offline jp2011ny

  • Member
  • Posts: 22
New diagnosis. New life... Scary...
« on: May 20, 2011, 04:30:41 PM »
Hi,
First time here. i'm glad I found this web site. I didn't know where to turn to. Here is my story.
I had pretty bad flu for 2 weeks around end of January early february. February 2nd was my 40th birthday. No party, no dinner, no nothing. And I went for a regular physical in early march. They wanted me to come in to review the test results. I knew something was wrong. I went back on march 8th and my dr. Told me I was positive. My heart felt like it was going to stop beating.
The same day I went for another blood test to get CD4 count and all that. It came out
CD4 count 438 (33%)
VL 65

I wasn't sexually active. I was dating a guy for a while and that's when I got infected I guess. I'm gay by the way.
I did another blood test on May 2nd. It came out as
CD4 531
VL 126

both went up slightly. I'm doing the next test in July. Hopefully my CD4 goes higher.
Is it common that my VL is this low at the beginning of the infection? Would it increase significantly at some point?
I have been feeling so ashamed of myself and depressed. And scared of course. But I decided that my new life has just began and I need to spend every moment at its full.
I just want to find out where I cam find support groups in NYC where I can meet other guys in the same boat and build some friendships. Please reply if you have anything to say to me or have any info that might be helpful for me.
Hope to get to know some of you if not all of you. Thank you for reading and I look forward to hearing from anyone.

JP2011NY 

Offline mecch

  • Member
  • Posts: 12,082
  • red pill? or blue pill?
Re: New diagnosis. New life... Scary...
« Reply #1 on: May 20, 2011, 06:30:11 PM »
Welcome to the forum. Sorry that you had to join the HIV+ "club".
Two things stand out in your post.

One, if its a new infection, count your lucky stars you have had a fabulous immune response!!  That is, again, if its a new infection!

Second, you mentioned twice a lack of support. No birthday. And wanting to find friends.

So first, you'll find support and some virtual friendships here. 

And yes, you'll want to try to connect in real life to find some community because nobody, HIV+ or HIV-, is an island. And isolation is not great for the health. 
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline jp2011ny

  • Member
  • Posts: 22
Re: New diagnosis. New life... Scary...
« Reply #2 on: May 20, 2011, 09:34:48 PM »
Hey mecch,
Thanks for the post. Can you please tell me more about the immune response thing? If that's the case, what would that mean? What can I expect? And if I had been infected and just didn't know about it, can my VL be so low without any treatment?

I think about my new condition every second of the day. I feel like I could never be happy ever again. But I know I can. I just hope things will get better soon.

Offline WillyWump

  • Member
  • Posts: 7,245
Re: New diagnosis. New life... Scary...
« Reply #3 on: May 20, 2011, 09:49:02 PM »
Hi there JP,

Welcome!

You have great numbers.

I'll let some of the more versed comment on your immune response. But I can tell you that my numbers 4 weeks after serocovnerting were approx 400 CD4 and 40k vl, my CD4 bounced around for about another 3 months before finally steadily decreasing, my VL grew to 180k after approx 6months. But everyone is different.

Again, Welcome

-Will
POZ since '08

Last Labs-
11-6-14 CD4- 871, UD
6/3/14 CD4- 736, UD 34%
6/25/13 CD4- 1036, UD,
2/4/13, CD4 - 489, UD, 28%

Current Meds: Prezista/Epzicom/ Norvir
.

Offline jp2011ny

  • Member
  • Posts: 22
Re: New diagnosis. New life... Scary...
« Reply #4 on: May 20, 2011, 10:03:14 PM »
Thanks Will. I guess I will know more about my condition as I get more blood work done. Are you on 3 different meds? How are they different? And it looks like your VL is undetectable? Am I correct? What does that mean? Sorry about all the questions.
Again, thanks Will.

Offline WillyWump

  • Member
  • Posts: 7,245
Re: New diagnosis. New life... Scary...
« Reply #5 on: May 20, 2011, 10:12:58 PM »
Thanks Will. I guess I will know more about my condition as I get more blood work done. Are you on 3 different meds? How are they different? And it looks like your VL is undetectable? Am I correct? What does that mean? Sorry about all the questions.
Again, thanks Will.

I'm currently on Prezista, Norvir, and Epzicom.  3 in the morning and 2 at night (5 pills a day) I started out with Atripla (you prob will also as it is the go to drug for treatment naive individuals). I've also been on Prezista/Norvir/ Truvada. I've absolutely loved all the regimins I've been on. The last 2 I have experienced ZERO side effects, they've been marvelous. Not even a wet fart :)

I've been UD for 2 or 3 years now. UD simply means that there is below 50 (or 20 depending on the test that is used) copies circulating in your blood. Being Ud is the primary goal of treatment, when you become UD typically your CD4's will climb since there is less HIV killing them off. Click on the "treatment" tab at the top of the page and it will explain what each med does, it will give you a good idea of what Meds there are and how they are used.

-WIll
POZ since '08

Last Labs-
11-6-14 CD4- 871, UD
6/3/14 CD4- 736, UD 34%
6/25/13 CD4- 1036, UD,
2/4/13, CD4 - 489, UD, 28%

Current Meds: Prezista/Epzicom/ Norvir
.

Offline thelovedones

  • Member
  • Posts: 58
Re: New diagnosis. New life... Scary...
« Reply #6 on: May 21, 2011, 05:51:17 AM »
Hi JP,

Welcome and sorry about your HIV. It's frightening and strange and it's going to feel strange for a while, but you're going to do fine. I found out at the very end of February and I'm 40 also, but my numbers were terrible. I hadn't been tested in a while so I had to get treated right away. You may have some time before you need to get treated, at least enough time to research a great HIV doc if you don't already have one. I found that for me, aside from these great forums, you gotta have a doc who knows what he's doing and who has a history of working with HIV patients. I'll tell you why. My first doc prescribed an antibiotic called Bactrim to prevent PCP, which is standard of care when you're CD4 is low and VL high. In 2 weeks out of the blue I started developing severe fatigue and terrible fever. This doc said I should go to the ER. I saw 7 doctors while in the hospital for 3 days and they were testing me for EVERYTHING under the sun until one of the 7 was able to detect that I was having an allergic reaction to the Bactrim, which as it turns out was not uncommon. This is the kind of thing that only a doc familiar enough with HIV treatment would be able to detect; the other 6 docs just did not have the right kind of experience. Not all docs are created equal.

Now, don't worry. You're not going to wind up in the hospital. I'm not trying to scare you; I'm only telling you this to illustrate a point. A good primary care HIV doc is going to be able to look at signs and symptoms in a more succinct way than your garden variety primary care doc. Also, this same doc will be able to address all your medical questions too.

good luck
2/26/11 – Diagnosis at State Dept of Health (anonymous testing center)
2/28/11 – Oral Swab Positive diagnosis and confirmatory blood test taken
3/4/11 – Confirmed HIV Positive diagnosis; blood drawn for T-cell count, VL, and medical profile
3/11/11 – VL: 192765, T-cell: 195
3/16/11 – Prescribed Atripla and took Pill 1
4/29/11 - VL: 413, T-cell: 311
6/28/11 - VL: UNDETECTABLE, T-Cell: 437


"I've seen this happen in other people's lives and now it's happening in mine"

Offline mecch

  • Member
  • Posts: 12,082
  • red pill? or blue pill?
Re: New diagnosis. New life... Scary...
« Reply #7 on: May 21, 2011, 06:27:58 AM »
When was your last HIV NEGATIVE test result.  In other words, can you estimate your date of infection, or not?
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline mikeyb39

  • Member
  • Posts: 946
Re: New diagnosis. New life... Scary...
« Reply #8 on: May 21, 2011, 09:43:34 AM »
Welcome to the forum JP.
11/02/2010  cd4-251, vl-591000
12/09/2010  started Atripla
02/18/2011  cd4-425, vl-800
06/10/2011  cd4-447, vl-70
10/10/2011  cd4-666, vl-80
01/05/2012  swiched med (prezista,norvir ,isentress, )
02/10/2012  cd4-733, vl-UD  Viread removed
06/10/2012  cd4-614, vl-UD
12/14/2012  cd4-764, vl-UD
09/01/2013  cd4-785, vl-UD
03/06/2014. cd4- 1078, VL-UD
09/05/2014  cd4-850 , VL-UD

Offline phildinftlaudy

  • Member
  • Posts: 2,975
  • sweet Ann what you think babe...
Re: New diagnosis. New life... Scary...
« Reply #9 on: May 21, 2011, 09:51:54 AM »
I join the others in welcoming you to the forums JP --- sorry for the reason that brought you here, but glad you found us.

Suggestions: a) read the various lesson sheets on this site; b) read the various topic areas in the forums, many of your questions will be answered; c) keep asking questions; d) make a list of questions to ask your doc at your next visit; and most importantly e) Keep Living - HIV does not have to run your life - there is still a lot of life to live.

Once again, Welcome!

-Phil
September 13, 2008 - diagnosed +
Labs:
Date    CD4    %   VL     Date  CD4  %   VL
10/08  636    35  510   9/09 473  38 2900  12/4/09 Atripla
12/09  540    30    60   
12/10  740    41  <48   
8/11    667    36  <20  
03/12  1,041  42  <20
05/12  1,241  47  <20
08/12   780    37  <20
11/12   549    35  <20
02/12  1,102  42  <20
11/12   549    35  <20

Offline Assurbanipal

  • Member
  • Posts: 2,173
  • Taking a forums break, still see PM's
Re: New diagnosis. New life... Scary...
« Reply #10 on: May 21, 2011, 11:19:51 AM »
Welcome to the forums JP


...about connecting with other poz guys in NYC, you might want to look up Strength in Numbers.  They have a yahoo group that sends several emails a day with a variety of potential opportunities for people to meet up including support groups, bar nights, game days...

http://health.groups.yahoo.com/group/SINNewYorkCity/

Best

Assurbanipal
5/06 VL 1M+, CD4 22, 5% , pneumonia, thrush -- O2 support 2 months, 6/06 +Kaletra/Truvada
9/06 VL 3959 CD4 297 13.5% 12/06 VL <400 CD4 350 15.2% +Pravachol
2007 VL<400, 70, 50 CD4 408-729 16.0% -19.7%
2008 VL UD CD4 468 - 538 16.7% - 24.6% Osteoporosis 11/08 doubled Pravachol, +Calcium/D
02/09 VL 100 CD4 616 23.7% 03/09 VL 130 5/09 VL 100 CD4 540 28.4% +Actonel (osteoporosis) 7/09 VL 130
8/09  new regimen Isentress/Epzicom 9/09 VL UD CD4 621 32.7% 11/09 VL UD CD4 607 26.4% swap Isentress for Prezista/Norvir 12/09 (liver and muscle issues) VL 50
2010 VL UD CD4 573-680 26.1% - 30.9% 12/10 VL 20
2011 VL UD-20 CD4 568-673 24.7%-30.6%
2012 VL UD swap Prezista/Norvir for Reyataz drop statin CD4 768-828 26.7%-30.7%

Offline jp2011ny

  • Member
  • Posts: 22
Re: New diagnosis. New life... Scary...
« Reply #11 on: May 21, 2011, 12:08:31 PM »
Thank you everyone for your kind words and encouragement. I feel much better already.
Thank you Assurbanipal for the poz group info.

To answer mecch's question, I was tested negative just over a year ago. And I'm pretty sure I was infected in January this year. But I could be wrong. I guess I will have to wait till my next test which is in July and see what happens.

I have another question for anyone in NYC area. I don't have an HIV specialist. I have been dealing with my PCP. He seems to know something about HIV but he is a regular doctor so I should find an HIV specialist. If you know of any great HIV specialists in NYC, please reply to my post. That will be greatly appreciated.
Thank you everyone.

Offline Ann

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  • Member
  • Posts: 28,140
  • It just is, OK?
    • Num is sum qui mentiar tibi?
Re: New diagnosis. New life... Scary...
« Reply #12 on: May 22, 2011, 10:39:41 AM »
Welcome to the forums, JP.

About your doctor - you may not need to switch. Ask him how many hiv positive people he sees. If he sees a lot, you may not need to go anywhere. Don't be afraid to question your existing doctor about his hiv knowledge. Many doctors in large metropolitan areas have many hiv positive patients in their practice and therefore know quite a bit. It also may be that he knows of a specialist he can refer you to. Don't be afraid to ask your doctor anything. A good doctor will welcome questions and if he doesn't or seems upset that you have the audacity to question him, then it's time to find a new doctor.

Good luck and hang in there - you're going to be ok.

Ann

Condoms are a girl's best friend

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"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline newt

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  • Posts: 3,887
  • the one and original newt
Re: New diagnosis. New life... Scary...
« Reply #13 on: May 22, 2011, 06:43:26 PM »
Hello, welcome

Sorry to hear about your diagnosis

Just to say, a CD4 count above 450-500 is normal so there's no point it going higher. Your numbers, especially how your immune system has gotten a handle on the virus, seem very good.

I am sure you will have a long and happy life.

- matt


Edited for spelling
« Last Edit: May 23, 2011, 06:20:40 AM by newt »
"The object is to be a well patient, not a good patient"

Offline jp2011ny

  • Member
  • Posts: 22
Re: New diagnosis. New life... Scary...
« Reply #14 on: May 22, 2011, 11:52:00 PM »
Thank you Ann and newt. I have so much going on in my life. I didn't think it couldn't get any worse. But it did. In a critical way. I am trying to move forward with my diagnosis.
This web site is helping me so much. Thank you everyone.
JP

Offline sbbw91581

  • Member
  • Posts: 6
Re: New diagnosis. New life... Scary...
« Reply #15 on: May 23, 2011, 11:00:25 PM »
Hello JP,

welcome to the group but so sorry to hear your news.  I was diagnosed HIV + only about a month ago, and i also live in NYC so i feel like i am here standing by you! First of all, you are going to do fine. Yes, this changes many things, but you are going to live a prosperous life. Your numbers are SO GOOD you should really count your blessings.  I am actually very envious of your numbers.

I knew i was infected in january also.  My blood work results did not come out as good as yours - my CD4 was 293, and VL was 32969.  I wish it could be higher.  My specialist and I agreed to start medication right away, but again every case is different.  In my case, i chose to take them.

I was lucky to find anHIV specialist who i can connect with instantly and he made me feel so much better.  If you still need a referral on a specialist, I definitely will recommend him!!

Ever since my first diagnosis there have been ups and downs, but I think overall I have been feeling better compared to the first week.  JP, it really is not the end, don't let this diagnosis ruin you.  you are certainly not alone and things could be worse. On top of my "new life", I also just lost my job last week!  (it really has not been a good month for me).  Now the whole insurance thing and future medical bills overwhelm me a bit but i am taking it one step at a time.  My point is, things can only get better.  It changed my life completely but it also helped me to learn how to live my life to the fullest.  i feel like i am now FINALLY living.

ps. check your inbox. i messaged you directly there as well.

best,
B

 


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