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Author Topic: 19 and Diagnosed  (Read 4782 times)

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Online dylonious

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19 and Diagnosed
« on: March 05, 2019, 10:48:06 pm »
Hello Everyone,

Ive never written anything on a forum, so please excuse me if I dont do this correctly. My name is Dylan, and on Friday, 03/01, I found out that I was truly mortal when I tested HIV positive. I went in for a routine physical, because I just recently had acquired health insurance from my parents. In the physical, I tested clear, but I asked to take a round of STD testing, because I was in a high risk group for attracting STDs. When I went back for my results last Friday, my white blood cell count was low, my total protein count was high, and I had tested positive for HIV. From the time I could remember what sexual education was, I remember being terrified of this specific virus. It has literally always been my biggest fear. The first time I Had unprotected sex when I was 17, I was tested afterwards and lied awake for days hoping that I didn't have it. This time around I gave it no thought, for I had been using condoms. When the doctor told me, I immediately started crying. I felt dread and sadness that was indescribable to anything that I had felt before. I had no idea who caused it or where to narrow it down. I notified my partners that I had been with.  I got released from work this last weekend, and went home to my parents. They tried to support me, but I can't help but feel so alone with this issue. It keeps looping in my brain that I did this to myself, and that I need to grow up and be a man and deal with this. I feel so angry at myself for jeopardizing my health and for getting this. I can't shower, or sleep naked because I can't stand the thought of being naked. I feel dirty. I feel unclean. I feel attached to the stigma that I had burrowed so deeply into my brain. After reading other posts, I see the positivity and the statistics of healthy thriving individuals that make this virus look like nothing. However, I can't help but feel like I dont want to do anything. I dont want to go to class, or work, or out of bed. I dont feel fatalistic, but I feel like I have lost my motivation and purpose. Im only 19, and very ignorant but very scared and emotional.  I took the rest of my confirmatory labs today, but the doctor said I won't be able to get an appointment for anything until April. Im scared. I dont know how to feel alive again. I want to go back in time and pretend this never happened.

Offline Jim Allen

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Re: 19 and Diagnosed
« Reply #1 on: March 05, 2019, 11:22:51 pm »
Hi Dylan,

Really sorry to hear about how you are feeling. Having a reactive HIV test result can truly be a lot to digest, I also understand you had an exposure at 17 tested afterwards and had fears at the time and this is perhaps bringing those back to the surface.  ... How long after the exposure did you test?

Anyhow what I would recommend is trying not to overthink this or over doing it on reading. We see false reactive results here all the time, in short the tests are over sensitive and a reactive result hence is not a diagnosis and, needs more specific follow-up testing.

So see the doctor when you have the next appointment and, if your confirmation results are indeed confirmed, then they will discuss treatment options with you, so one step at a time. Until you have confirmation testing done and, a VL (Viral load) result I am going to ask you to only post in this one thread and have moved it to the "AM I" section.

Quote
After reading other posts, I see the positivity and the statistics of healthy thriving individuals that make this virus look like nothing

Yeah, with treatment people living with HIV can live long, healthy and, productive lives. Medically speaking HIV simply is not game changer anymore

I know I said don't read too much and i'm guessing like most you probably have been googling and reading up all ready, if you are reading up there is a lot of easy to digest information in the poz lessons, links can be found in the "I Just tested positive" welcome thread, so if you are looking for information this would be a good place to start https://forums.poz.com/index.php?topic=2276.0

Anyhow, try not to overthink this.

Best, Jim
« Last Edit: March 05, 2019, 11:29:27 pm by JimDublin »
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Online dylonious

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Re: 19 and Diagnosed
« Reply #2 on: March 07, 2019, 06:18:25 pm »
So, I got my test results back.

I am confirmed to have HIV.

My viral load is 45700 and my CD4 was 21. I dont know what these mean, what the ranges are or anything. I feel numb. I was really hoping that it could have been a false positive.

What now?

Offline Jim Allen

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Re: 19 and Diagnosed
« Reply #3 on: March 07, 2019, 06:44:29 pm »
Hiya,

Sorry to hear that, I'm presuming you did not see the doctor to get the result?

The viral load is not huge, but that's normal though as this tends to spike in early months of infection and than settles back down, this settling level is different for everyone. The CD4 range is low, in a person not living with HIV this would average somewhere between 400 to 1200 +-

Although don't stress about the numbers, see it as a starting point and, remember that with treatment you can live a long healthy normal life.

For example purposes only, HIV infection average time line.



The next step is to see the doctor, they will be taking more bloods for tests and to help them understand what treatment options would work & suit you best, so you can than start treatment.

In addition they quite possibly will start you on some preventive antibiotics regimen to help keep you healthy, this is only until the the HIV medication starts to suppress the virus normally within a few months and your immune systems CD4 have had a chance to go back up to at least 200+

There is a basic lesson on this here as well with more information https://www.poz.com/basics/hiv-basics/starting-hiv-treatment

When was your follow-up appointment planned?

Jim
« Last Edit: March 07, 2019, 06:52:54 pm by JimDublin »
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Online dylonious

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Re: 19 and Diagnosed
« Reply #4 on: March 07, 2019, 06:54:22 pm »
The viral count just seems so large. And I was wondering if the CD4 that they gave me was a percentage, which would put my actually count around 330. Because I thought that having it under 200 meant you have AIDS. Im just trying to read in between the lines. They said that they were able to get me in at the end of march, the 26th to be exact. Im still having a hard time processing these emotions. I still am in denial, and I have these irrational fears. Im trying to read, but everyone experiences it differently, so I can't help but feel alone.

Offline Jim Allen

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Re: 19 and Diagnosed
« Reply #5 on: March 07, 2019, 07:07:48 pm »
Hiya

Quote
everyone experiences it differently, so I can't help but feel alone.

This is true for everything in life, no exception as far as i am aware. So as for being newly diagnosed and digesting the news its also true, although I do understand that this feels all overwhelming somewhat, and we here have all been in your position or similar positions at some point.

You're also not alone, you have a supportive family and currently a forum full of people living with the same condition. In a few weeks or months you might find a local peer support group as well and, meet other people living with HIV face to face, you probably meet people living with HIV all the time BTW you just don't realize it.

Quote
Because I thought that having it under 200 meant you have AIDS.

Technically below 200 is considered AIDS in the US, although some people call it "Advanced or Late stage HIV" nowadays and, its no reason for panic. Once you start treatment the virus will be suppressed allowing your immune system to start to heal/recover

Quote
In addition they quite possibly will start you on some preventive antibiotics regimen to help keep you healthy, this is only until the the HIV medication starts to suppress the virus normally within a few months and your immune systems CD4 have had a chance to go back up to at least 200+

Quote
The viral count just seems so large

Mine was countless millions as example at some stage, so in that perspective 500K is not huge. Anyhow its just a starting point, once you start treatment this will be suppressed within a few months.

Did you get the results over the phone or did you speak to them face to face?

Best, Jim
 
« Last Edit: March 07, 2019, 07:11:01 pm by JimDublin »
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PEP and PrEP

Online dylonious

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Re: 19 and Diagnosed
« Reply #6 on: March 07, 2019, 07:15:26 pm »
I contacted a nurse this morning about some of the results, but she didn't call e back until later. She went over the two, and said that the other lab results had to be sent somewhere else to do more specialized testing. They have to tell something about antibodies to see if it will be resistant to any certain drugs or something like that. I feel like I'm too young to have this. Is it weird to feel like I would rather of contracted it at forty? When did you get the virus? How did you feel? What helped you make it through the first week?

Offline Jim Allen

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Re: 19 and Diagnosed
« Reply #7 on: March 07, 2019, 07:35:15 pm »
Quote
I contacted a nurse this morning about some of the results, but she didn't call e back until later. She went over the two, and said that the other lab results had to be sent somewhere else to do more specialized testing. They have to tell something about antibodies to see if it will be resistant to any certain drugs or something like that.

Resistance testing, is checking the strain HIV and, if its developed resistant to any treatments, this is just to help them understand what drug options would work best for you.

This is a pretty much standard thing to check.

Quote
I feel like I'm too young to have this. Is it weird to feel like I would rather of contracted it at forty? When did you get the virus?

Young people have all kinds of manageable conditions, particularly nowadays in part because were better at detecting conditions and, have treatment options. Young people can have asthma, diabetes, and, plenty of other conditions as example including HIV.

What helped me through the first weeks, simply knowing it was not the end just the start.

Things are different nowadays and for you than it was for me, nowadays treatment is recommend regardless of counts, there are far more & better treatment options to start with, back when i caught HIV this was not the case and we had to wait to first have very low counts and/or until we got sick to start treatment. 

Best, Jim



« Last Edit: March 07, 2019, 07:42:38 pm by JimDublin »
HIV 101 - Everything you need to know
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HIV Transmission and Risks
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HIV Testing
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HIV TasP
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PEP and PrEP

Offline Jim Allen

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Re: 19 and Diagnosed
« Reply #8 on: March 11, 2019, 02:07:31 pm »
Hi OP,

How are you getting on?

Best, Jim
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Online dylonious

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Re: 19 and Diagnosed
« Reply #9 on: March 12, 2019, 03:07:02 pm »
Hey Jim,

Thanks for checking in. Ive been doing slightly better. Recently, I have been trying not to think about it. Every time I try and think about it though, Im filled with anxiety and sadness. My depression has been pretty bad, I've had no motivation to do anything except watch Breaking Bad and smoke weed all of the time. I feel like nothing I do has any true meaning. I missed last week in college, so now the stress of being behind is catching up to me, only making me spiral into a deeper depression about the whole situation. I also can't get the thought of roughly 50,000 individual viruses making home in ever cubic mL of blood. The imagery is shaking me.

How are you doing? Just curious about your life.

Thanks - Dylan

Online dylonious

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Re: 19 and Diagnosed
« Reply #10 on: March 12, 2019, 03:09:08 pm »
Also: if anybody else who reads this wants to share anything with me about how you get through it, your emotional state, or anything related feel free to post on here or message me. Id love to see more perspective.

Offline Jim Allen

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Re: 19 and Diagnosed
« Reply #11 on: March 12, 2019, 03:23:47 pm »
Quote
How are you doing? Just curious about your life.

I'm fine Dylan, just knackered from work and hungry. But first going to have to listen to my daughter play the tin whistle  ::) she has to practice for school, its a just one of those things parents have to grin and bear.

Quote
Thanks for checking in. Ive been doing slightly better. Recently, I have been trying not to think about it.

Glad to hear you are doing slightly better, that numbness that is hitting you is something many of us can relate to when being newly diagnosed, it really can take time to digest the news.

I posted the below last week for someone but it equally I think could help you.

Quote
Other things you could do to help you through this time are things like:

  • Exercise, join a gym or run in the park.
  • Taking time for yourself, even short walks on breaks during the day
  • Eat well, eat healthy
  • Plenty of sleep/Rest
  • Avoid isolation, socialize. Friends etc but also perhaps peer support groups.

About the peer support groups, have you looked into if there are any local peer support groups? I think meeting more people face to face who have experienced the same can be really good.

Take it easy and when you see the doctor do let them know how you are feeling, its important

Best, Jim
HIV 101 - Everything you need to know
HIV 101
Transmission and Risks:
HIV Transmission and Risks
Read more about Testing here:
HIV Testing
Read about Treatment-as-Prevention (TasP) here:
HIV TasP
You can read about HIV prevention here:
HIV prevention
Read about PEP and PrEP here
PEP and PrEP

Offline Loa111

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Re: 19 and Diagnosed
« Reply #12 on: March 13, 2019, 04:17:45 am »
Sorry to hear about your DX. My CD4 came in at 22 nearly the same as yours.
I was shocked n scared to read that this was considered aids, indeed that shocked n shook me up more that the original DX. I was quite sick too with a couple of Opportunistic Infections OIs, and terribly run down, lost a lot of weight n looked thin n sick. Good news is I bounced back real good once the meds kicked in , and youíll bounce back to full health soon too. No doubt about that!

Are you feeling ok or have you been sick with any OIs?

Yes itís a real headache and it does take time to mentally feel normal again.

My coincidence I binged watched Breaking Bad too last year when I got Dxíed.  :)
I felt like doing nothing and itís just this year Iím starting to do stuff again. Thatís ok, I mentally allowed myself all of last year to recover as Iíd no energy.

Things will get better for you and keep coming here n posting for support.

Offline harleymc

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Re: 19 and Diagnosed
« Reply #13 on: March 13, 2019, 11:24:49 pm »
Hi,

A gazillion years ago I was diagnosed.  I remember that numbness.

Don't worry about a label like AIDS,  your doctors and their medications will take good care of that virus. That'll be a big boost to your sense of control.

I am worried that your studies are suffering,  you need to make and get a plan working to talk to a social worker at your college to buy you a little time.  When you see him or her also inquire if there is some way you can get referred to a counsellor, you shouldn't be in a head space that'll impact you long term.

I'm diagnosed for over 30 years now and the big harms in my life came not from the HIV, but to the bridge burning I di during depressive or anxious times.

Good luck with it all.



Offline Jim Allen

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Re: 19 and Diagnosed
« Reply #14 on: March 28, 2019, 03:35:33 pm »
Hi Dylan,

How are you getting on?

Best, Jim
HIV 101 - Everything you need to know
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Online dylonious

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Re: 19 and Diagnosed
« Reply #15 on: March 28, 2019, 04:15:45 pm »
Hey,

Im doing okay. I had my ID doctor's appointment two days ago. Ive started Biktarvy. My next appointment is going to be on the ninth. Ive been handling my day to day slightly better than I was previously. However, talking to the specialist made me have to confront all of my feelings again. It was nice to pretend like nothing had happened for a second. Since I wasn't on any medication yet, I could just go through my day and try and not be reminded by it at all. I mean, nobody just brings up HIV. But now I have to deal with it every morning when I have to take the pill. I know it's probably one of the most mild inconveniences that exist, but the thought of having to actively deal with this every day is scary.

Another thing that Ive been worried about is  I have to deal with this for the rest of my life. Im only nineteen (almost 20 in a week now) and have been super unpredictable in my emotions already throughout my life. I have gotten into depressive episodes where I jeopardized my health. So the pressure that I have to be responsible enough to ALWAYS take it, despite any life circumstance that life throws at me, is unsettling and scary.

But I'm getting through it. I know i'll be okay. Let's just hope these midterms I just took went well to spite circumstance.

How're you? Hows tin whistle practice going?

Dylan



Online dylonious

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Re: 19 and Diagnosed
« Reply #16 on: April 09, 2019, 10:52:50 pm »
Hey just an update:

I went to the doctor today for a two week follow up after taking Biktarvy. I haven't really felt any side effects, or none that are too obvious, so it really hasn't felt like much of anything had changed since before I was taking it. When I went in, we went over the results of my original VL and CD4: 47500 and 423 (apparently the 21 was the precent). Then I was told that in just two weeks my VL is all the way down to 278 and my CD4 is 743. The doctor said that by my next follow up in May, the likelyhood of me being undetectable will be very likely.

I am very happy with these positive results. I thank God for them. However, I can't help but feel very numbed in this situation. I don't feel much of anything about it. Everything has happened so fast. I was diagnosed a little over a month, and I feel like a lot has happened in a short amount of time. Anybody else have any similar experience?

Offline Jim Allen

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Re: 19 and Diagnosed
« Reply #17 on: April 10, 2019, 03:24:16 am »
Hi Dylan,

Fantastic results, your VL is nearly suppressed after just 2 weeks! Its great news.

Sorry for not getting back to you sooner BTW. Tin whistle continues to do my head in ;D

Quote
I can't help but feel very numbed in this situation. I don't feel much of anything about it. Everything has happened so fast. I was diagnosed a little over a month, and I feel like a lot has happened in a short amount of time. Anybody else have any similar experience?

Feeling a bit numb or a tad overwhelmed would be pretty standard. Its all pretty fast paced at first and besides that the new diagnosis is a lot to digest.

That numbness might last a while but it will pass, what also helps is its not always going to be this hectic, new & faced paced I hope you realize that. Things will settle such as visits to doctors etc will become less and less and, the few check-up visits a years that remain will become routine.

Having said all that, what might also help is a few sessions talking to a counselor to help you digest this new situation. I'm just throwing it out there as food for thought.
Besides that you are always welcome to talk here, I hope you know that.

Best, Jim
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Offline pb246

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Re: 19 and Diagnosed
« Reply #18 on: April 18, 2019, 03:02:29 am »
Hey,

Havenít had the chance to read the rest of your thread but hi! Just wanted to relate with you. I am 19 and itís been about my 3rd month now after being diagnosed HIV+. Iím unsure exactly of what advice to give since Iím still especially trying to dig myself out of my own rut and build myself back up again. But truly wanted to reach out to reinforce, make sure youíre taking care of yourself and stay devoted to your medication. Itís the best time to value yourself for who you are.

Online dylonious

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Re: 19 and Diagnosed
« Reply #19 on: May 28, 2019, 04:42:09 am »
Hey,

Just an update. On May 15th, I went in for a follow up, and my CD4 is at 28 percent, and my viral load is down to 29! Iím officially undetectable. As far as my mood, i hardly think about it, because there really isnít much to think about anymore. I am now back into the normal routine of a college student, and still ended up making deans list for this semester! Thanks everyone for the support. I honestly donít know what i wouldíve done without your voices of reason in the sea of my emotions.

Offline Jim Allen

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Re: 19 and Diagnosed
« Reply #20 on: May 28, 2019, 05:30:50 am »
Fantastic update and, glad to hear all is going well  :)
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