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Author Topic: Recently tested positive... would like to share my story  (Read 3801 times)

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Offline mrfarms

  • member
  • Posts: 1
Recently tested positive... would like to share my story
« on: May 03, 2012, 09:08:05 PM »
Hello all.

I was so relieved to find this site. I've spent all day reading all of the great posts. To all of you that have posted or responded to posts, you've given me hope. Thank you.

On March 30 I went to have a physical. Went in thinking that the doctor may say I need to lose a few pounds and that's it. ( 5'10" 180lbs) Ran a whole array of blood tests since it's been 2 years since my last. Doctor said if I don't hear from him then everything was fine.

On April 3, the doctor called me and left a voicemail. I was having lunch with my partners sister and her son. On the ride home I listened to the voicemail and the doctor said "One of the STD tests came back positive, I sent you an email". I immediately logged on to my health insurance site and read "STD test is positive for HIV, I have forwarded your case to our Infectious Disease for follow up."

As like everyone else who has ever tested positive, I was floored. I've always been one to take bad news okay and I knew that I needed to take this news the exact same way. The only exception was I am in a newer relationship. So my immediate thought went to my boyfriend. Did he give it to me? Did I give it to him?

I'm so grateful to my boyfriend. I called him immediately after finding out my results. He simply responded "I love you and I will be here for you no matter what." Long story short, he tested negative. What a relief! He goes back in 2 months for another test.


I've sat and thought about how I could have been infected. Plain and simple, I trusted someone who said they were negative and come to find out they were not. So here I am. I can't change anything now. I can only move forward and focus on keeping myself healthy.

I feel as though maybe I haven't come to grips about it all. Of course, I've cried and said why me, I've felt anger, felt ashamed and felt helpless. Has anyone else just sprinted towards the view and focus of just living with this and not having it define you?

On April 9, I met with my new doctor, pharmacist and case manager. They are all so wonderful. All greeted me with a warm hug. My doctor told me my cholesterol is high, 202 and I am deficient in Vitamin D. So I started a vitamin D supplement once a month she prescribed. She sent more blood for a resistance test and the results are back. I meet with her again next week.

She also had me get a TB shot, Hep A, Hep B, flu and pneumonia vaccinations. Needless to say, my arms killed me that day. Is there any other vaccinations I should be getting?

My numbers:

4/3/12- Tcell- 283
            VL- 30,280
            Perct.- 27%

She was feeding me so much information, I forgot to ask how these numbers measure up! I do remember her saying though that she wants me to start medication as soon as possible. I travel for a living and don't have a normal 9-5 schedule. Is it true that most if not all medications must be taken at the exact time every day?

Also, are there any recommendations on anything I should be doing to prepare for medication?

Any help any of you can give would be so greatly appreciated.

::HUGS::


Offline Hellraiser

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  • Posts: 4,136
  • Semi-misanthropic
Re: Recently tested positive... would like to share my story
« Reply #1 on: May 04, 2012, 12:59:08 AM »
She also had me get a TB shot, Hep A, Hep B, flu and pneumonia vaccinations. Needless to say, my arms killed me that day. Is there any other vaccinations I should be getting?

My numbers:

4/3/12- Tcell- 283
            VL- 30,280
            Perct.- 27%

She was feeding me so much information, I forgot to ask how these numbers measure up! I do remember her saying though that she wants me to start medication as soon as possible. I travel for a living and don't have a normal 9-5 schedule. Is it true that most if not all medications must be taken at the exact time every day?

Also, are there any recommendations on anything I should be doing to prepare for medication?

Any help any of you can give would be so greatly appreciated.

::HUGS::

Welcome to the forums, and sorry you're here, but make the best of a bad situation I suppose.

The TB shot you were given is actually a test to see if you're carrying a latent TB infection.  As for medication your doctor will talk over the specifics to let you know what the options are, if you're resistant to any of the drugs etc., but the part you need to be comfortable with when you begin taking medication is the fact that you will be taking this pill daily for the rest of your life.  Some people have trouble with that commitment so just putting it out there.  The other part of medication is you will have to establish a "trend" in your bloodwork before they will really discuss medication with you.  This is due to the fact that if your infection is recent your numbers will bounce all over the place before balancing out.  However, with your relatively low viral load I'm under the impression that this infection is probably at least a couple of months old.

Offline wolfter

  • Member
  • Posts: 4,460
Re: Recently tested positive... would like to share my story
« Reply #2 on: May 04, 2012, 01:16:07 AM »
Welcome to the forums.  I'm almost floored that she emailed the results.  I didn't realize they do that.  Even though email didn't exist yet when I was infected, I couldn't have imagined not having anyone to immediately talk to.

As was mentioned, you'll need to wait til your numbers stabilize in order to get your true trend.  Your low vl probably indicates a fairly recent infection.  When it is time to start meds, there's no need to worry about an "exact" time every day.  With today's drugs, there is quite a variance when they can be taken each day.

Take care and best wishes.

Wolfie
Complacency is the enemy.  ;)  Challenge yourself daily for maximum  return on investment.

Online geobee

  • Member
  • Posts: 274
Re: Recently tested positive... would like to share my story
« Reply #3 on: May 04, 2012, 02:00:03 AM »
Your T-Cell number warrants beginning meds.  The new guidelines recommend starting meds at a T-Cell count of 500 or below.

I would google "first line HIV regimens".  I can't remember, but there are three or four recommended first line drug regimens which are selected because of maximum efficacy and minimum side effects.  I'm on one of those regimens -- Truvada / Reyataz and Norvir.  I take three pills once a day, with food.

Another of the first line regimens is Atripla -- once a day.

Your doc will give you a resistance profile test.  Where I am (the SF Bay Area) about 10-15 % of the new cases have some resistance.  I was passed a partial resistance to Atripla, that's why I'm on the other combo.

Incidentally, my doc recommended the combo I'm on before she even knew of the resistance.

There will be a new quad pill -- similar to Atripla -- soon that I'll be eligible to take.  I'm currently being evaluated for a "switch" trial.

Hang in there -- the news is intense when you first get it.  It gets better.  I freaked out for about a year.  But now I live a pretty normally life -- sexually, health-wise, and morale-wise.  I do take better care of myself than I used to, and I have noticed that I sleep more.  That could be because of my age, though.  I'm 48.

In solidarity! -- George

Offline wolfter

  • Member
  • Posts: 4,460
Re: Recently tested positive... would like to share my story
« Reply #4 on: May 04, 2012, 02:16:34 AM »

I would google "first line HIV regimens".  I can't remember, but there are three or four recommended first line drug regimens which are selected because of maximum efficacy and minimum side effects.  I'm on one of those regimens -- Truvada / Reyataz and Norvir.  I take three pills once a day, with food.


Why would he need to google it when it's all covered here under the lessons section? 

Wolfie
Complacency is the enemy.  ;)  Challenge yourself daily for maximum  return on investment.

Offline buginme2

  • Member
  • Posts: 2,834
Re: Recently tested positive... would like to share my story
« Reply #5 on: May 04, 2012, 02:44:29 AM »
Sounds like you are taking everything in stride.  Like you, I tested positive while in a relationship. 

I have a couple suggestions since you are newly diagnosed and have found yourself in a Serodiscordant relationship. 

If you can, bring your partner to a couple of your HIV Dr appointments.  Let him ask your doc questions.  I had brought my boyfriend with me in the beginning mostly as support for myself.  What I found out later was that those appointments helped him in dealing with this as he was able to ask the doctor questions and hear from the doctor himself that I was going to be ok.

Also, my boyfriend made an appointment with an HIV dr and went to see him without me.  He was able to ask all the questions he didn't want to ask in front of me and it really helped. He of course was concerned 1. How after over a year together was he not positive and 2. How can he remain negative.  Those questions that I couldn't answer we're answered for him and it helped us.

Another thing is probably the #1 thing you can do to prevent you from spreading HIV to your partner is to start meds and maintain an undetectable viral load.  Sounds like your doctor is already preparing you for that.  It also is the #1 way to maintain your health.

Good luck, any questions just ask.

Offline ruralguy

  • Member
  • Posts: 141
Re: Recently tested positive... would like to share my story
« Reply #6 on: May 07, 2012, 01:51:45 PM »
Hi-  I am glad you found these forums.  They will answer a million questions for you and help you navigate your situation better.

I've been on Atripla for about 2.5 years now. It made my viral count undetectable very quickly and it's stayed that way ever since.  I feel fine.  Most people take it at night but I take it in the morning, first thing when I get up.  It's just part of my routine.  1 pill a day in the morning...how many millions of people do that for one thing or another.  And I'm fine.  Life rolls on, not very different from what it was.

So I just wanted to leave you an encouraging note.  It is a freaky, upsetting, experience to go through, no doubt about that.  But, at least for me, it's just another life experience.  You should have confidence that you will be fine too. 

Be sure to return here, read up on things, and ask these forums any questions you like.  Also, look for the 2012 versions of guides to HIV by Joel Gallant of Johns Hopkins University.

Wishing you all the best.....
tested positive June 19, 2009
7/3/09 vrl 9000 cd4 - 300
8/14/09 cd4 - 350, 20%
started Atripla 9/14/09
10/5/09 vrl undetectable, WOW so fast!
12/28/09 vrl undetectable, CD4 - 615  27% cholesterol down, kidney function normal
4/26/10 vrl undetectable, CD4-600, kidney and liver numbers normal
9/9/10 vrl undetectable, CD4-685
1/3/11 vrl undetectable, CD4-700
all 2011 and Jan 2012 visits vrl undetectable CD4 ranged from 715-645
5/7/2012  vrl undetectable, CD4-615, all liver, kidney, lipids, heart functions, etc normal


On Atripla:  "Your mileage may vary"

Offline songs06

  • Member
  • Posts: 114
Re: Recently tested positive... would like to share my story
« Reply #7 on: May 08, 2012, 06:08:10 AM »
sorry to hear about your diagnosis. but it is great to have your boyfriend by your side. i tested positive just 2 weeks after i started my relationship. luckily, we haven't had sex for that time. so my boyfriend is negative and he is my biggest support. if he wasn't with me, i can't even imagine how i could bear all these pain in the first month. so i think you are lucky to have such a nice partner.
you can always send messages for anything you want to talk about. i am hoping the best for you.
18.03.2012 - infected.
14.04.2012 - first positive elisa - UD western blot
30.04.2012 - western blot confirmation positive
03.05.2012 - first lab- CD4: 256   VL: 2.3 M
01.06.2012 - sec lab- CD4: 390 (end of ARS)
01.07.2012 - third lab- CD4: 388 VL: 150.000
11.07.2012 - Started Truvada + Kaletra
04.08.2012 - CD4: 401 VL: 3800
30.09.2012 - CD4: 510 VL: 709
04.01.2013 - CD4: 650 VL: UD! (aka 20)
01.04.2013 - CD4: 460 VL: UD
09.2013 - CD4: 510
02.2014 - CD4: 490

Offline dudeitsmedweeb

  • Member
  • Posts: 11
Re: Recently tested positive... would like to share my story
« Reply #8 on: May 11, 2012, 04:10:58 PM »
Hello and welcome to the forums, I am 27yo, I had a similar story to yours and I can totally relate. I was only 1 month into my relationship I suggested we both get tested thinking I would come back good and I was just watching out for him. I had missed my follow up to my doctors visit after my routine test which it also included HIV routine test, when my doctor called to ask me to go to his office asap I knew I was not in for good news. I told my guy about a week after but I knew I had gotten mine from someone else.
Anyway, I guess I am relating to the fear of what a recent relationship will play .
To this day we are almost going on a year and things are okay, I'm still not on meds but coming up this summer things may change.
VL is 24,000 AND T's 400ish .. I started at VL 4,00 and T at 625..
Take care and best luck.

 


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