Author Topic: Introduction (Read 14628 times)

ajay1980 · « **on:** August 13, 2020, 12:37:26 pm »

Hello,
I just tested positive this week. I feel like since then, I am waking up to a different world, where I feel angry, scared, sad, emotional, depressed and then optimistic reading everyone's posts and reading about the advances these days. It sucks that there is a pandemic going on which limits a lot of the things I feel would help me (i.e. support groups). I have my first appointment w/ a doctor next week and I am unsure if I need to do anything from now until then? Alot of the informaiton online can be overwhelming!! I appreciate everyone sharing their journeys, and now I have my own. I am open to suggestions on ways to emotionally cope with this and thank you in advance!

Jim Allen · « **Reply #1 on:** August 13, 2020, 04:07:21 pm »

Hiya,

Sorry to hear about the diagnosis.

I understand it can be a shock and a lot to digest. Most of us have been through this, hang in there, just take it one day at a time for now. When you say you tested positive how did you test, what test?

As for reading information online I bet it's being overwhelming, I would say try not to overdo it at the moment.

What important next is getting onto treatment and your doctor will recommend what treatment combination will best suit you best based on some test results. There is some easy to digest information in the POZ lessons here: https://www.poz.com/basics/hiv-basics/newly-diagnosed

For now I'm going to ask you to only post in this one thread. Feel free to post any question you might here and people will chime in to offer any support they can.

Take it easy.

Best, Jim

ajay1980 · « **Reply #2 on:** August 13, 2020, 05:54:34 pm »

Thanks Jim!
I went to may primary doctor for my regular STD/ HIV labs and he called me saying I was HIV positive. It was not the rapid testing. Do you think I should take that test again somewhere?
Appreciate your advice!

Jim Allen · « **Reply #3 on:** August 13, 2020, 06:06:29 pm »

Hiya,

Yeah, it's just a screening test, with a reactive result not an diagnosis. So just try not to overthink things or presume anything until next week after the Doctors appointment and confirmation testing & results have come back.

Best, Jim

Jim Allen · « **Reply #4 on:** August 13, 2020, 06:23:30 pm »

P.S

Totally understand this is stressful but try to live your life as normal in the meantime and if you have question then feel free to ask here in this thread but don't get ahead of things until it's confirmed.

Keep us posted. Best, Jim

ajay1980 · « **Reply #5 on:** August 13, 2020, 06:31:19 pm »

Thanks Jim!!
So the screening test is first, which I did with my primary care doctor, and then the specialist asked me to take labs (alot of blood) for my appt next week, will that give him results and considered the 2nd test? Or will I take another test then?
Appreciate you being responsive!! It's helping me alot!

Jim Allen · « **Reply #6 on:** August 13, 2020, 06:46:42 pm »

Hiya,

Yes, the blood samples taken will be used to conduct confirmation testing asides from being used for several other tests. Including determining your VL (Viral Load), CD4 count a resistance panel, it's all to help the doctor decide what treatment options suit you best should the confirmation test confirm your HIV status.

I understand it's not easy right now but try not to overthink things until all the results are in and you have had the meeting with the doctor to know where you stand.

ajay1980 · « **Reply #7 on:** August 13, 2020, 07:31:30 pm »

You are so awesome!
Thank you so much!! I will wait until next week and update my journey. Truly appreciate your answers and advice!!

ajay1980 · « **Reply #8 on:** August 22, 2020, 12:33:57 am »

Hi!
Had my appt w the Infectious Disease doctor today. CD4 243, VL 162,000. He prescribed Biktarvy and I started it tonight.
He made me feel ok. I feel a little better about things. Any thoughts on those initial #s? He was very reassuring but told me that the VL was a little high.
Appreciate any feedback! Thanks forum!

Jim Allen · « **Reply #9 on:** August 22, 2020, 03:10:01 am »

Hiya,

Glad to hear you have a reassuring doctor and you have strated treatment.

Quote

Any thoughts on those initial #s?

Quote

He was very reassuring but told me that the VL was a little high.

Any viral load that is not suppressed I would call high, however, plently of members here have had viral loads even in the millions, including myself. So don't worry the treatment will suppress the viral load.

The CD4 count it's lower than the average HIV Negative persons CD4 count (400-1200), although, as it's above 200 and you have started treatment to suppress the virus those counts are not really that important. Also, the CD4's should start to bounce back once the virus is suppressed.

Take it easy. Best, Jim.

ajay1980 · « **Reply #10 on:** August 22, 2020, 08:42:41 pm »

Thank you Jim!
Much appreciated!

I feel hopeful now. Still scared and have my instances of shame, sadness and embarrassment still. But knowledge and time seem to help!

Pirata · « **Reply #11 on:** August 23, 2020, 06:11:06 pm »

We all know that feeling, after I was diagnosed a year and a half ago, I felt like I was in a bubble and separated from the rest. I used to think how many people around me were in the same situation, I also used to feel dirty and guilty. I used to look around and mentally said goodbye to my dogs, my friends etc. I know all the information out there tends to be confusing, once I got my medication, I read so many reviews about it, many were bad, many were good. I lived with high anxiety for a couple of months. I also had a hard time getting my CD4 up and I was sad about it.
Now I have learned that this, as many things In life, is a matter of time and patience. There is not a lot that you can do before you get your first appointment. The only thing that is for sure is that you are going to be fine, once you get your medicine, you are going to be on your way to recovery, and one year from know, you are not going to be thinking all the time about your condition. It’s going to be your own journey and we are here to help you as much as we can.

ajay1980 · « **Reply #12 on:** August 24, 2020, 10:25:19 pm »

I appreciate that so much Pirata! I love that everyone shares their experiences as it truly helps me and I am sure alot of others! The support and information is incredible!!
How are you doing these days?

Pirata · « **Reply #13 on:** August 25, 2020, 05:36:58 pm »

I am doing good, my CD4 have been rising, I am healthy and there are many days in which I don’t even think about it, I just remembered when it’s time to take my pill. I hope everything is going better with you

ajay1980 · « **Reply #14 on:** August 25, 2020, 08:36:21 pm »

Waiting patiently to get to that point! Lol
Good on you!

ajay1980 · « **Reply #15 on:** August 30, 2020, 12:05:18 am »

I had a good day today. The biggest obstacle of this experience for me and my mental well being was telling my parents. I struggled with it since I got diagnosed. We just never talk about the bad things. I was waiting for the right time these last 2 weeks, but I realized there was no "right time". Today i felt informed enough from my research and compelled enough from the posts on here from everyone and their stories to just do it. I looked at it as one of those things you want that you just go get it. That was my mindset. So I found th e courage to do it. The thing I wanted them to understand was that I wasnt scared of the diagnosis anymore, because of the meds and advances, but telling them was the scariest part. They surrounded me w hugs and said I would be ok. After the 30 minutes of love, there was that silence as they processed. But I knew that this was my time to be me and live and act like myself so they could see I was going to be ok. Before i knew it, it felt normal again. My dad was researching things before I left lol
This was so difficult so if anyone needs support, Im here!
It was the hardest thing!

ajay1980 · « **Reply #16 on:** September 29, 2020, 10:21:09 am »

Just got my results for my VL load after my first initial appt. back in July. From 162,000 to 106. Is that normal for it to drop so big? Stupid question I know I can google but once I get it down to undetectable VL, does it just stay that way or can it go back up to the thousands again? Thanks!

Jim Allen · « **Reply #17 on:** September 29, 2020, 10:35:24 am »

Great results with the VL down to 106 copies.

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From 162,000 to 106. Is that normal for it to drop so big?

Yeah, that can happen. I've seen larger VL's drop off like that before. You started treatment end of August right?

So anything under 200 is considered UD in terms of transmission. All you have to do is keep it with treatment below 200 for 6 months by continuing to take the meds so you can't sexually pass it on. https://forums.poz.com/index.php?topic=71848.0

Treatment wise, it generally accepted under 50 copies is fully suppressed/UD. Some labs can monitor lower levels.

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does it just stay that way or can it go back up to the thousands again? Thanks!

Untreated HIV VL will go up and down,but, generally without treatment the viral load over time will go up into the thousands or millions even. However, you have started treatment and the job of the meds is to keep the virus suppressed.

How are you feeling/doing otherwise?

Best, Jim

https://www.poz.com/basics/hiv-basics/starting-hiv-treatment
https://www.poz.com/basics/hiv-basics/switching-hiv-treatment "How do I know if my treatment is not working?"
https://www.healio.com/news/infectious-disease/20190318/qa-understanding-persistent-lowlevel-viremia-in-people-with-hiv

ajay1980 · « **Reply #18 on:** September 29, 2020, 03:30:10 pm »

Thank you Jim!
Yes I started treatment end of August. Mild headaches here and there, but nothing I can't handle!!
Emotionally and mentally I am in a better place!! Telling my parents was the one thing that kept me feeling low, so telling them last month really lifted that weight of shame and now my family is very supportive and even helping me out more!!
I tried to go to a virtual support group, but it was tough to relate to people who were already passed the initial diagnosis phase and way later in their journeys.
I appreciate the answers Jim and hope you are well as well!

Jim Allen · « **Reply #19 on:** September 29, 2020, 03:36:59 pm »

Hiya,

Really glad to hear things are getting better and it's great to hear that your family are being supportive.

Hopefully the headaches will pass but do keep your doctor posted and feel free to keep us updated from time to time on your journey

Best, Jim

ajay1980 · « **Reply #20 on:** September 30, 2020, 10:00:20 pm »

Appt today went well. My doc didn't request my CD4 labs and said the VL is what he is looking at and scheduled the CD4 for my next appt mid November. Is that normal to not check that at every appt?
I do have to get some vaccinations in October. He was overall pleased w my progress

Jim Allen · « **Reply #21 on:** September 30, 2020, 10:49:15 pm »

Hiya,

Glad to hear the appointment went well

Quote

My doc didn't request my CD4 labs and said the VL is what he is looking at and scheduled the CD4 for my next appt mid November. Is that normal to not check that at every appt?

Your CD4 count was above 200 and since then you started treatment to suppress the virus, monitoring CD4's counts is not important anymore. The VL is the one to monitor.

Best, Jim

ajay1980 · « **Reply #22 on:** September 30, 2020, 11:12:35 pm »

We can always count on you Jim! Thank you for always being responsive! Appreciate the quick response!!

Jim Allen · « **Reply #23 on:** September 30, 2020, 11:19:25 pm »

You're welcome.

ajay1980 · « **Reply #24 on:** November 20, 2020, 12:24:14 pm »

Updated w #'s today.
351 CD4 and VL under 20 so not quantifiable.
This journey is so up and down! Very happy w Bitkarvy and the progress! Enjoying the small wins during this maddening year!

Tonny2 · « **Reply #25 on:** November 20, 2020, 01:54:51 pm »

ojo. Congratulations!!! And keep up the good work...I envy you because you are taking just one pill a day while I’ve to take eight a day, well, after 26 years of living and fighting hiv/aids, I shouldn’t being complaining, I am still alive...best of luck and I hope you keep making plans for the future...hugs. ojo

ajay1980 · « **Reply #26 on:** November 20, 2020, 02:13:57 pm »

Thank you ojo! Can I ask why you take 8? Are you able to switch to something that will still help? 26 years is awesome!! You give hope to us all!

abrokenman · « **Reply #27 on:** November 21, 2020, 09:45:19 am »

Hi Ajay1980

Welcome to this great group as you will find many People here for support and discussion to help you along. I'm saddened to hear how HIV diagnoses & getting started on treatment has been an emotional roller coaster for you but believe Me, in time you won't feel turmoil of the up's & downs because before you know it You will be moving along in a forward direction with every day being better than previous days. Trust me as I was once there, since September 2016.

I am happy to hear that your Parents took your personal news well and that you have love and support from them. That in itself is part of good HIV therapy. Try not to overwhelm yourself by reading every bit of info out there about HIV because I did and it was very stressful for Me and put me through the ringer. I learned to just read the here and now current articles and follow from there. Once I started doing that I felt more empowered to sail my journey and become comfortable in My own skin and not self loathing myself. One thing I have come to know about being HIV+ undetectable is that I have better health guidance from my ID Doctor because I have been vaccinated to the fullest for everything and anything just to keep me protected and that is more than if I wasn't HIV and just went to my family doctor for usual checkups.

Hope to see/hear more from you here in the group and enjoy each and every day and remain strong. Take care

ajay1980 · « **Reply #28 on:** November 21, 2020, 08:13:46 pm »

Thank you abrokenman! This forum has been such a good source if information and knowledge! And I am grateful to hear other stories and how everyone navigates through it. I appreciate you sharing and hearing from someone who has been through all these stages!

ajay1980 · « **Reply #29 on:** March 12, 2021, 11:00:42 pm »

Updated CD4 596

. Waiting for VL results as the last time in November it was under 20 and non quantifiable. I have been feeling good, but still having those up and down days w my mental health. I don't think the pandemic is helping any! Anyways, I hope everyone else is doing ok! Just thought I'd share my update!

SFlSurvive · « **Reply #30 on:** April 25, 2021, 12:03:18 am »

I know I'm kind of late. I just read your post from August 2020 and it reminded me of the time I went through the same thing. I was diagnosed in 2016 and I stayed up all night and day reading these post and they helped so much and everyone was so nice. Nowadays I forget about my diagnosis with everything else going on in life. I never thought it would come to a point where I would say that but it is true. I take the 1 pill a day and go get my check ups every few months or so. Thank God I have not had any issues due to my status so far. Most of the stuff I have put myself through is mental and has nothing to do with hiv really. I kind of feel empowered that I am up to date on my health because before my diagnosis I did not take care of myself at all. You got this!

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Author Topic: Introduction (Read 14628 times)