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Author Topic: OMG, someone please help me and hug me. i was just diagnosed...  (Read 7377 times)

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Offline sbbw91581

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  • Posts: 6

I am new to this board and I am so glad to have found this place.  I am a gay male in my late 20’s living in NYC and i was diagnosed + just earlier this week (Monday) and I am SOOO scared.  it's only been 24 hours and I am terrified, devastated, ashamed, confused.. I am feeling so much my head is gonna explode.   but at the same time i am also relieved (is this normal?) because before the results the fear of not knowing was hard to bear as well.   It is now hitting me dead in the face and i am reeeeaaalllly scared. ??? ???  I am always good at not looking back and I know there’s no point to look back and regret for what I’ve done, and I try not to do it now…this is now a real true test.

I hate uncertainties and waiting, so right away I was able to schedule an appointment with an HIV specialist for tomorrow and I guess that will be my another round of blood tests to find out my counts. i guess no matter what it is the result will be a shock to me, but I am hoping it won’t be so bad.  God, it’s only  been 24 hours and I don’t think I have ever read this much stuff on one topic as much as I have done now.  I am reading all these posts and it’s truly helpful.  I am somewhat feeling better, but I know it’s gonna be up and down for a bit.  To all of you wonderful people, I am truly feeling the love and support and encouragements  and I have some uncertainties I want to clear up, so here are some questions.  I hope you all can give me insights:



-   I knew I am infected only since January this year and I know exactly who passed it on to me.  Does it matter how long it’s been infected?  If infected for a longer period of time (let’s say years, compare to months), does it mean there are more VL, less CD4? Is it proportional like that?

-   After my initial test  results tomorrow,  should I do another round of testing to confirm?

-   I hate waiting!!  In between the testings and results, what can I do to ease my mind? Go for more testings?

-   I am all about meds!!  Can I take them right away? or does it have to be recommended by the doctor? 

-   But also, are there any cases that go without meds?

-   How often do I need to do blood tests to monitor, Once a month?


I know I am jumping all over the place, but this really is changing my life. I can’t believe it’s happening to me, it’s so surreal.
I have read from all the posts that staying healthy and doing the right nutrition/fitness helps tremendously and I have always been active, healthy, eating right, going to the gym and in good shape.  Just a couple weeks ago before finding out all this, I have even signed up for personal training session with a  trainer just to kick it up a gear in terms of fitness.  Funny how this seems to be paving the way.  I guess now I truly have something to work hard for.

Thanks for reading my rants and venting.  i hope someone can answer my uncertainties for now, and I am sure I will have more later.  and I do hope I will feel better…  eventually. please tell me i will!?   Thanks for your time and I really need a hug. :-\

B

Offline PosMedStudent

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  • Posts: 12
Re: OMG, someone please help me and hug me. i was just diagnosed...
« Reply #1 on: April 26, 2011, 07:48:07 PM »
Hi sbbw,

Welcome to the forum! I'm sorry to hear about your diagnosis. I got recently diagnosed and totally understand what you are doing through now. This forum has great info and everyone on here is very nice, friendly and supportive. You are not alone. There's wonderful life after the diagnosis. It takes sometime to get over what you're feeling now, but allow yourself to grieve or do whatever. It's perfectly normal. You realize that you need to focus on your health and do whatever it takes to stay healthy. There are some adjustments to your lifestyles, but I'm sure you know how to handle that.

I know it's not fun to wait, but sometimes you will have to be patient. I hope the lab results come back good and perhaps you won't have to be on med. You will have to read and learn much about HIV. This site has excellent information. Your doctor can work with you and determine if you need to be on med.

I wish you the best. Let us know if you have any questions.

Offline sbbw91581

  • Member
  • Posts: 6
Re: OMG, someone please help me and hug me. i was just diagnosed...
« Reply #2 on: April 26, 2011, 08:24:55 PM »
Hi PostMedStudent,

Thanks so much for your kindness and response.  I have read your posts and learned that you are recently diagnosed as well.  Im glad we have each other through this forum.

You mentioned you hope i didn't have to be on meds. I CERTAINLY hope that too!  However, I always thought meds is a MUST? If no meds were necessary initially, what other treatments are there, just monitoring?

This site certainly has many excellent info.  The more I read the easier I am with myself.  I am feeling somewhat better now.  Tomorrow will be a big day and I pray that it will go smoothly.

Thanks again,
B

Offline DanMo

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  • Posts: 235
  • Finally undetectable! ;D
Re: OMG, someone please help me and hug me. i was just diagnosed...
« Reply #3 on: April 26, 2011, 08:36:28 PM »
Hey there sbbw,

I know exactly how you are feeling! I just went through the same experience not too long ago. I was diagnosed positive March 14, 2011. And a month before that, I was told I might be positive… the uncertainty of not knowing how the Western Blot would turn out and all the research I did for false positives drove me crazy. I started thinking there must have been some mistake, that it was a cosmic joke…

 I can echo what PosMedStudent said, it’s normal to grieve/mourn. It took me like a week and a half of mourning about losing my “old” life as a negative guy. But I’ve come to realize that I’m the SAME person as I was before I got diagnosed, you are too! You are not different, you’re still the same person!

In response to you questions about medications: I’ve come to learn form this site that it all depends on your numbers. Once your CD4 starts to fall below 350, your doctor will start talking to you about starting medication. There are some people who advocate starting medication once your CD4 drops below 500, but that is your own personal decision in consult with your doctor. But keep in mind that you shouldn’t base it off just one test, but a trend of various tests over time (of course in consultation with your doctor).

Blood tests are usually done every three months. (Especially at the initial stages).

Dan
“I tried to drown my sorrows, but the bastards learned how to swim, and now I am overwhelmed by this decent and good feeling.” —Frida Kahlo

11 Feb 2011 - Preliminary positive
07 Mar 11 - Inconclusive WB
14 Mar 11 - Diagnosed positive
05 Apr 11 - 355 (21%) / VL: 186,054
27 Apr 11 - 390 (20%) / VL: 285,095
06 Jun 11 - 298 (19%) / VL:  78,380
01 Aug 11 - > STARTED ATRIPLA <
30 Aug 11 - 699 (31%) / VL: 1,938
03 Nov 11 -                / VL: 645
27 Dec 11 - 559 (35%) / VL: 1,189
11 Jan 12 -                 / VL: <20
09 Apr 12 - 686 (40%) / VL: UD
11 Jul 12 - 793 (37%) / VL: 25

Offline phildinftlaudy

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  • sweet Ann what you think babe...
Re: OMG, someone please help me and hug me. i was just diagnosed...
« Reply #4 on: April 26, 2011, 08:44:32 PM »
Hi B:

Welcome to the forums - glad you found us, even if under these circumstances.  Below are some responses to your questions --- I'm sure others may also have some feedback for you.  Once again, welcome.

1) After my initial test  results tomorrow,  should I do another round of testing to confirm?  If the results you are getting back are your confirmatory results (the Western and Elisa tests) then you should be able to rely on the results  of those results-   

2) I hate waiting!!  In between the testings and results, what can I do to ease my mind? Go for more testings?  If there is an ASO (AIDS Service Organization) near you - see if they have support groups - keep informing yourself, participate in these forums, ask questions and contribute.  No reason to go for more tests, unless recommended by your doctor.

3) I am all about meds!!  Can I take them right away? or does it have to be recommended by the doctor?  Typically, in the US - doctors usually recommend starting treatment when CD4 falls below 500; however, some people choose to wait.  It should be a discussion that you have with your doctor and a decision that you can make in consultation with your doctor.-   

4) But also, are there any cases that go without meds? There are some people who go many many years without needing meds based on their cd4 counts and viral load.

5) How often do I need to do blood tests to monitor, Once a month? Most people I know, myself included, get lab work done every three months - however, every doctor and person is different -


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 Cliff

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  • Posts: 2,645
Re: OMG, someone please help me and hug me. i was just diagnosed...
« Reply #5 on: April 27, 2011, 12:52:26 PM »
B,

It may not seem like it now, but you'll be fine.  I was diagnosed at 27 and thought the world was ending.  It didn't (almost 8 years on now).  Get all the advice you need.  Ask all the questions you want.  Trust yourself to make the right the decisions for you.

Hugs to you! 

x

Offline emeraldize

  • Member
  • Posts: 3,344
Re: OMG, someone please help me and hug me. i was just diagnosed...
« Reply #6 on: April 27, 2011, 01:00:00 PM »
Hi B,

As good as you can envision a cyber-hug, here's one for you.

It will get bettter!

Em

Offline OzJock28

  • Member
  • Posts: 12
Re: OMG, someone please help me and hug me. i was just diagnosed...
« Reply #7 on: April 28, 2011, 04:28:19 AM »
Hey mate, how did you go with your blood work today? what was the time frame they gave you for results?

Offline sbbw91581

  • Member
  • Posts: 6
Re: OMG, someone please help me and hug me. i was just diagnosed...
« Reply #8 on: April 28, 2011, 10:58:41 AM »
Hello DanMo, Phildinftlaudy, Cliff, Emeraldize, and OzJock28 and everyone  ,

Thanks everyone for your care, hugs, and response, I really feel your support!!    All of you really made me feel so much better and it is a good feeling to know that I am not alone.  Here are some updates since my last post:  I went to see the doctor yesterday and I consider myself VERY lucky to find my specialist.  He was super encouraging, friendly, and very easy to talk to, I was able to talk openly about my whole ordeal – how it started, how I was diagnosed, etc.  I instantly clicked with him and I know it will be a good partnership.  He confirmed I was indeed + but he reassured me that I am going to be OK and need not to worry.  They took 10 tubes of blood for all the different lab work and 2 weeks from now I will go in again for the results.  I’ve done all my research but my specialist also schooled me on what CD4 and VL could mean in the first test result.  What I learned from him gave me a stronger peace of mind.  My specialist is a believer in meds which I think is a good thing that both of us are on the same page.  Depends on how the results come back we will figure out a plan if meds are needed.  Either way I guess I am ready…

I spent the last few days sorting things through on my own and tried to claim a peace of mind for myself and I am glad I did not shelf myself in a hole.  Besides talking to my specialist, I also talked to the ‘friend’ who I think infected me.  We talked everything out and shared everything.  we were both worried, scared, shocked, and at times we were just silent and laid down next to each other.  He still needs to do his testing to confirm but we knew we would have each other.  After talking it out on here, and with the selected few, I realized voicing it out helped a great deal for me.  It’s only been 3 days since I was diagnosed, I am not sure if I’m coping too fast or whatever but I am feeling much better by now.  I realize I can live with myself and that I am really still the same person!! 

Thanks again to everyone and please do stay in touch. I will update everyone again when I get my lab results back and hopefully we can share more insights.

Much love and thanks,
B

Offline denb45

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  • Posts: 5,051
  • "1987 Classic Old School POZ+"
Re: OMG, someone please help me and hug me. i was just diagnosed...
« Reply #9 on: April 28, 2011, 11:17:37 AM »
Hello DanMo, Phildinftlaudy, Cliff, Emeraldize, and OzJock28 and everyone  ,

Welcome to the Forums here is a big fat {{{ HUG }}} coming your way  ;)
"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

Offline DanMo

  • Member
  • Posts: 235
  • Finally undetectable! ;D
Re: OMG, someone please help me and hug me. i was just diagnosed...
« Reply #10 on: April 28, 2011, 11:37:18 AM »
Hey B!

I'm glad everything went great for you on your first visit!

Dan
« Last Edit: April 28, 2011, 10:25:57 PM by DanMo »
“I tried to drown my sorrows, but the bastards learned how to swim, and now I am overwhelmed by this decent and good feeling.” —Frida Kahlo

11 Feb 2011 - Preliminary positive
07 Mar 11 - Inconclusive WB
14 Mar 11 - Diagnosed positive
05 Apr 11 - 355 (21%) / VL: 186,054
27 Apr 11 - 390 (20%) / VL: 285,095
06 Jun 11 - 298 (19%) / VL:  78,380
01 Aug 11 - > STARTED ATRIPLA <
30 Aug 11 - 699 (31%) / VL: 1,938
03 Nov 11 -                / VL: 645
27 Dec 11 - 559 (35%) / VL: 1,189
11 Jan 12 -                 / VL: <20
09 Apr 12 - 686 (40%) / VL: UD
11 Jul 12 - 793 (37%) / VL: 25

Offline PosMedStudent

  • Member
  • Posts: 12
Re: OMG, someone please help me and hug me. i was just diagnosed...
« Reply #11 on: April 29, 2011, 12:22:19 AM »
Hi B!

Glad to hear that things are going good with you. Chin up! You're be doing fine. Please keep us posted on whatever comes next.

PosMedStudent

Offline rocky48

  • Member
  • Posts: 37
Re: OMG, someone please help me and hug me. i was just diagnosed...
« Reply #12 on: April 30, 2011, 10:39:03 PM »
 :)  Welcome sbbw: I was diagnosed August of 2008 and just started Atripla a week ago Friday.
I know the feeling my mind ran wild but over time I did somewhat adjust to my new life.  Really not to much has changed in my life just one extra pill at night.

You take care and wait for blood test to come back
Started Atripla on 4/23/11
5/27/11   CD4 - 572 VL - 130
9/30/11   CD4 - 566 VL - UD
3/23/12   CD4 - 640 VL - UD
9/21/12   CD4 - 699 VL - UD

Offline thelovedones

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  • Posts: 58
Re: OMG, someone please help me and hug me. i was just diagnosed...
« Reply #13 on: May 04, 2011, 09:39:22 AM »
hi sbbw,

Welcome. It's all going to feel like a rollercoaster for a while: days you feel scared out of your mind and days where you feel like nothing is wrong at all. But the good news is that you are going to be fine. You are living in a time and in a city where HIV is something very manageable and very common place. While it sucks that you got infected; you are probably in one of the best places in the country for care, resources and community. Count your blessings, darlin!  :)

I'm fairly new to this myself. What I found has helped me besides the forums and having caring people in my life, is trying to find out as much about HIV as possible as it relates to your particular situation and deal with the facts and NOT the "what if's"; you can drive yourself crazy if you do. And deep breaths. Take very deep breaths. Try to relax and keep your head on straight. If you're in NYC, there's GMHC and Callen Lourde where you can become a client and get as much free information as possible. As for starting meds, you should get yourself a really good Infectious Disease doc or Primary Care doc who has been doing HIV for a long time and who you are comfortable with. In my case, I had to start soon after I was diagnosed. You may not need to go on meds right away depending on your Viral Load/T-Cell count. This is something you'll decide with your doc.

All the best to you. You're going to be fine.
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 RichardfromIndy

  • Member
  • Posts: 17
OMG, someone please help me and hug me. i was just diagnosed...
« Reply #14 on: May 06, 2011, 10:00:29 PM »
I first tested in September 1990 and the results came back inconclusive.  My first response was one of disbelief because I was so certain that such a thing could not happen in Indianapolis.  These kinds of things happened in San Francisco or New York City.  I re-tested and just lost it because I didn't want to believe it was happening to me.  Of course, the tests came back positive.  Still, I refused to believe it.  It was months before I was able to tell the person who meant the most to me the truth.  The whole time having unprotected sex with her.  I was so stupid.  It was all about me.  I had lied for years about my behaviors or kept them secret.  I'm ashamed to admit that I was so selfish, but for years and years it had been all about me and what I needed.  I know exactly when it happened.  I had this terrible premonition, but refused to believe it could happen to me.  I was selfish and stupid.  It's great that you are reaching out.  Don't try to do this by yourself.  Isolation is the worst thing you can do, keep in mind that you have to protect others from catching this dreaded disease.  Find a friend or friends to support you.  If there is a local group that provides support for those that are hiv+ join it and attend meetings.  Take your meds diligently, do all that you can to take care of yourself healthwise......eating right and exercising.  You are not alone in this fight.  In 1990 it was almost like a death sentence, but with the medications that are available today you will be able to live a long and loving life.  Track your progress.   

Offline sbbw91581

  • Member
  • Posts: 6
Re: OMG, someone please help me and hug me. i was just diagnosed...
« Reply #15 on: May 23, 2011, 11:32:57 PM »
Hello Everyone,

It's been a while since I last updated.  Thanks again for everyone's kind word of support, these few weeks have been a roller coaster ride with ups and downs, but I have been doing great and feeling better since I was first diagnosed.  I can't believe I was able to go through it thus far!

I have gotten my first test result.  They weren't too bad I guess but somehow I wish they were better.  My CD4 = 293, and my VL = 32969.  My specialist and I both agreed we should start medication right away.  I had another round of blood work done for drug resistance tests and i will visit my specialist later this week to find out what medications work best in my case and take the next step.  Most likely Atripla I would say?  I think one pill is the easiest way, what does everyone think?

Just when I think I have things settled, I also JUST lost my job last week! MAN!!  Now I am so worried about insurance/medical bills/medications, etc... but I am going to take one step at a time and figure out each step a long the way.  Maybe there could be something that can pay for my medications, or even insurance if there is.  I am trying to stay positive (ha!) and keep reminding myself that things can only get better from now on.

Wish me luck on my next visit this week! 





Offline Ann

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  • It just is, OK?
    • Num is sum qui mentiar tibi?
Re: OMG, someone please help me and hug me. i was just diagnosed...
« Reply #16 on: May 24, 2011, 10:03:42 AM »

Maybe there could be something that can pay for my medications, or even insurance if there is.

Wish me luck on my next visit this week! 


SB, check out the Insurance, Benefits & HIV forum. You'll find a lot of information there and you can start your own thread there with your own specific questions. I'm really sorry to hear you lost your job. Crappy timing, eh? :-\

If you want to know more about other people's experience with Atripla, check out the Treatment and Side Effect forum. You can also start your own thread there to ask specific questions about Atripla that may have not been answered while reading existing threads.

You should also check out the Drugs Lessons section of the forums.

Good luck with your next appointment.

Ann
Condoms are a girl's best friend

Condom and Lube Info  



"...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 clubbin1980

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  • if u want a pic ask and ill send via e-mail
Re: OMG, someone please help me and hug me. i was just diagnosed...
« Reply #17 on: June 07, 2011, 12:19:08 AM »
Welcome to this site... Ur numbers are ok and seems like u gave a good medical team working with u. I have been poz since '07 and no medication but have had scares... I'm there for any questions.. I am also in ny state and have gone through insurance issues due to being unemployed.. Any questions feel free to message me..

Much love and smiles
J.

 


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