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Author Topic: Just found out.  (Read 4707 times)

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Offline JH3310

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  • Posts: 6
Just found out.
« on: November 07, 2013, 04:16:15 PM »
Hello guys!

Ahhhhhh! so for the last few month I have 2 bruises that don't go away and my boyfriend kept telling me to check it out. I obviously never did. But 2 weeks ago another appeared in my right triceps and I officially got scared. On Tuesday I went to a dermatologist and got a biopsy. That night I spend hours doing research and came across Kaposi sarcoma. Although my boyfriend told me that there was no way that what I have looked like any of the pictures online I was skeptical.

I can't remember the last time I felt sick, I had none of the HIV symptoms I was sure that I was negative. So I decided to get tested and not worry about it anymore. I went yesterday after work and the words of the coordinator are still ringing in my ear "Unfortunately you came back positive. But don't worry we are here to help." Aggggg... The first thing in my mind was my boyfriend. I would hate for him to have it too. I felt so bad, but at the same time I knew that it would be ok.

I got in the car and called my partner and told him that he needed to get check. He instantly told me to pick him up. While he was getting tested I was in the car praying that he was ok. God heard my prayers because he got in the car crying and telling me that he was ok, but felt horrible for me. 

The worst was getting back home and realizing that my life has forever changed. I just got in the shower and cried thinking that I have a month to breathe. Today I have spent the day doing research and reading this forum. Thank god for all of you, without you knowing you have been my savior this past 12 hours. I have my first doctor's appointment on Monday and it cannot come soon enough. I want to start whatever I have to start to get healthier. The biggest problem with me is that I have no idea what to expect and that is a huge hear of mine.

My plan is not to spend time asking "why me?" or "how did I get it?" and "am I going to die?" I really don't HIV to take over my life. I want it to be something that I have to cope with the rest of my life, but that I am still able to have the experiences of a regular person.

I hope to share my process with you and I want to learn from your experiences. I hope that everything is ok.

Thank you for taking the time to read this thing.


PS: Do any of you know anything about Kaposi sarcoma?   :-\ I only have a like 3 and they are very light. I hope that they can go away with treatment. Also, did any of you learned that you got HIV without having any of the "typical symptoms"?
« Last Edit: November 07, 2013, 04:25:40 PM by JH3310 »

Offline GoForIt

  • Member
  • Posts: 206
Re: Just found out.
« Reply #1 on: November 07, 2013, 04:28:19 PM »
From what I understand and have read KS goes away soon after starting treatment/meds.

You will also start to feel better after getting on meds.  (I became much less fatigued and my appetite came back a lot, but for healthy foods) 

I personally had no symptoms.  I did get a light throat infection earlier in the year but it went away on its own and did not really feel like the symptoms I've read about.

Your doctor should run more extensive tests next to see your genotype and resistance.  You will also learn your CD4 count and VL.  From there you can decide when to start treatment with your doctor...but it will probably be immediate since you are dealing with the KS.
08/09/2013  Diagnosed WB positive
08/20/2013  CD4-506(28%)  VL-10,800
09/12/2013  CD4-391(28%)  VL-14,900
09/17/2013  Start ART (Truvada + Tivicay)
10/11/2013  CD4-377(26%)  VL-UD
12/20/2013  CD4-590(??%)  VL-UD
03/18/2014  CD4-660(29%)  VL-UD
07/22/2014  CD4-613(29%)  VL-UD
08/01/2014   Start Phase 3 TAF (Truvada 2.0) Clinical Trial (TAF + Tivicay)
10/09/2014  CD4-498(29.5%) VL-UD
11/06/2014  CD4-600(30.2%) VL-UD
01/30/2015  CD4-529(31.3%) VL-UD
07/25/2015  CD4-742(36.5%) VL-UD
10/06/2015  CD4-765(28.9%) VL-UD
01/05/2016  CD4-907(33.1%) VL-UD
03/24/2016  CD4-770(33.5%) VL-UD
06/20/2016  CD4-850(35.4%) VL-UD

Dr. Mark Wainberg on Dolutegravir:
Video 1: https://youtu.be/wCXOgLJqJAY
Video 2: https://youtu.be/DKiaD7fHO-s

Offline JH3310

  • Member
  • Posts: 6
Re: Just found out.
« Reply #2 on: November 07, 2013, 04:52:45 PM »
Thank so much. I hope my appointment on monday goes well. :)

Offline Joe K

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  • Member
  • Posts: 5,820
  • 31 Years Poz
Re: Just found out.
« Reply #3 on: November 07, 2013, 05:17:36 PM »
Hello JH,

Welcome to the forums... and then take 5 deep breaths and try to relax... really.  Testing poz is one of the most traumatic experiences you will ever have and I urge you to simply feel whatever it is you feel, without the need to do anything about any of it.  This also applies to you self-diagnosing yourself with KS.

I fully empathize with what you may be feeling right now, however, adding unneeded stress is something you just do not need.  You might want to take it slow, be really good to yourself and that includes your body, mind and spirit and continue to breath regularly.

You seem to have already decided on how you will deal with your new status and all I can urge is caution.  You don't know what you will feel, so give yourself permission to feel, whatever it is you feel, without any guilt or regret.  Adjusting to being poz is a journey, not a destination.  Nobody can tell you how your journey might be, however, we will be here to walk along side you.


Offline JH3310

  • Member
  • Posts: 6
Re: Just found out.
« Reply #4 on: November 07, 2013, 05:35:26 PM »
Joe, thank u sooo much. That is the exact advise I needed. Is that since the news I have been feeling so many emotions that I haven't had time to put everything in perspective.

Offline Jeff G

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  • Posts: 17,062
  • How am I doing Beren ?
Re: Just found out.
« Reply #5 on: November 07, 2013, 05:41:17 PM »
Welcome to the forum . If your HIV infection is new then its doubtful that you have KS . If you have been positive for years and didn't know it then it could be .

I had KS and it is in remission now due to treatment . Best of luck .       
HIV 101 - Basics
HIV 101
You can read more about Transmission and Risks here:
HIV Transmission and Risks
You can read more about Testing here:
HIV Testing
You can read more about Treatment-as-Prevention (TasP) here:
You can read more about HIV prevention here:
HIV prevention
You can read more about PEP and PrEP here
PEP and PrEP

Offline Joe K

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  • Member
  • Posts: 5,820
  • 31 Years Poz
Re: Just found out.
« Reply #6 on: November 07, 2013, 06:48:36 PM »
... Is that since the news I have been feeling so many emotions that I haven't had time to put everything in perspective.

That was my entire point.  Many things you will feel, are simply feelings.  Feelings are neither good nor bad, they just are.  Sometimes we just need to feel something, for the simply purpose of experiencing those feelings.  I think what's important, when talking about feelings, is to remember: just because you feel something, does not make it true or false.  Sometimes a feeling is just a feeling.  Nothing more, nothing less.


Offline JH3310

  • Member
  • Posts: 6
Re: Just found out.
« Reply #7 on: November 11, 2013, 04:50:32 PM »
Hello guys,

I finally had my first visit to the doctor today. All my preliminary questions were answered. He said that I look to be healthy and show no signs of abnormality outside of the KS. He was very puzzled how I got KS and not the regular symptoms, but hopefully once my blood work comes back some of those questions will be answered. I am much more calmer although I am anxious for my CD4 and vital load number to come in 2 weeks. I will keep you all updated.

Offline Dan0

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  • Posts: 577
Re: Just found out.
« Reply #8 on: November 11, 2013, 05:19:46 PM »
When I tested, it was one of those community outreach assembly line testing situations....everyone was doing it and I wanted to be 'supportive'. Not one symptom or even a notion that I COULD be positive. Of course, when I told the tech that he was obviously WRONG, he didn't seem to inclined to listen to me. 
"Honey, you should never ask advice from a drunk drag queen who has a show to do." - JG

06/2002 DX
10/2006 Atripla UD
10/2013 Stribild Still UD
04/2016 Genvoya UD

Offline Theyer

  • Member
  • Posts: 2,695
  • Current ambition. Walk the Dog .
Re: Just found out.
« Reply #9 on: November 12, 2013, 10:48:00 AM »
Just dropping in to introduce self and say welcome. You are not the first person to puzzle a medic have no fear of that , Hiv is puzzling though great strides have been made.
All the best for now
"If we can find the money to kill people, we can find the money to help people ."  Tony Benn


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