Newly diagnosed, my introduction

[Michael78]

In September/October I was not doing well. I suffer from depression and was at a point where I didn't want to do anything. I went to work because I had to but came home after and laid in my couch. I wouldn't answer my phone for anyone.
In late October I began to get sick. I was nauseous in mornings and nights and tired all day. I had a rash and was having an issue with my mouth. I couldn't eat and lost a lot of weight in a very short period of time. I went to the Dr and he told me I have thrush and wanted me to take a panel of tests. I got a call two days later from him and he told me I was HIV +. I was at work when I got the news and had a coworker in there with me so I couldn't respond or ask any questions. I just had to eat the news. They scheduled a follow-up blood test and a Dr appointment with  an infectious disease dr for yesterday (dec 21, 2020) at my appointment yesterday I was told my vl is over 1,000,000 and my cd4 is 103. I had done reading on HIV between that first phone call and this appointment (over a month!) So I was shocked to hear not only do I have HIV but aids and I've likely had it for many years. I have not once cried since getting any of this news. I am devastated but I don't think I can process this fully yet. I don't have any friends and have no family I can talk to about this stuff and so I'm really going crazy in my head.
I don't know what I'm hoping for in this site. Maybe some real friends and support? I don't know.
This is my story. Thanks for reading.

[Jim Allen]

Hi Michael,

Sorry to hear about the diagnosis and that you had been feeling unwell.
Are you physically feeling any better yet?

am devastated but I don't think I can process this fully yet. I don't have any friends and have no family I can talk to about this stuff and so I'm really going crazy in my head.
I don't know what I'm hoping for in this site. Maybe some real friends and support? I don't know.

The diagnosis can be a lot to digest and it takes time to process. If you have questions or simply want to talk or vent we are here for you, you are not alone.

You had the appointment yesterday with the ID doctor, have you started treatment yet? Did they also start you off with some antibiotics like Bactrim/septrin given the low CD4 count?

Best, Jim.

[Michael78]

I am nauseous now. Was just dry heaving and I think it's because the medicine they put me on yesterday. She warned me I would probably feel bad for next few weeks. I am taking biktarvy for HIV sulfamethoxazole to prevent pneumonia and fluconazole for thrush. I took it all as soon as I got it yesterday and then when I got up this morning. Morning will be my regular time. I just wanted to get it started yesterday.

[Michael78]

I am nauseous now. Was just dry heaving and I think it's because the medicine they put me on yesterday. She warned me I would probably feel bad for next few weeks. I am taking biktarvy for HIV sulfamethoxazole to prevent pneumonia and fluconazole for thrush. I took it all as soon as I got it yesterday and then when I got up this morning. Morning will be my regular time. I just wanted to get it started yesterday.

[Mindless]

Hi Michael,

I just opened the website and read your story. I’ve been dx almost 4 years ago. I’m 51 and I’ve been suffering from depression most of my life. I feel your pain, this forum helped me lot, I hope it can do the same for you.

Hold on!

Hugs

[Michael78]

Thanks mindless.
Trying to hold on. I just have so much on my mind it feels impossible right now. I keep thinking about how long I may have had this and what that means as far as my kids (youngest just turned 5). Could she be infected? It is killing me to think about who I may have infected.

[Jim Allen]

Hiya,

I am nauseous now. Was just dry heaving and I think it's because the medicine they put me on yesterday. She warned me I would probably feel bad for next few weeks

Glad you have started treatment.

It is indeed possible to feel worse before feeling better. Asides from settling into HIV treatment I know the antibiotics can be rough for some people, including myself. Also, as HIV starts to be suppressed by the HIV meds and your immune system gets stronger it may pick up on infections or start to fight infections previously ignored.

Thankfully the antibiotics and antifungal are not meds you will need to take permanently and with some time the HIV meds will suppress HIV.

I keep thinking about how long I may have had this and what that means as far as my kids (youngest just turned 5). Could she be infected?

Had these thoughts myself years ago. It's common practice to screen during the first trimester for HIV during pregnancy, do you know if that happened?

Did you discuss this fear with the ID doctor?

[virgo313]

Hello Michael,

Sorry to hear that you are having a tough time adopting to being Poz. There are lots of people that go through the same like you at the beginning. Overtime most will feel better & will get pass this stage. Try not to be to worry as you now have started medication. I too have “Aids”. But this is just a term for ppl that have low CD4. If there is no issue with health then you don’t have to feel worry. I have way lower CD4 then you & now I am fine.

Just continue with any Dr appointments & we are here to support. 

[Michael78]

Jim, I did discuss that with the Dr yesterday. She said it's not normally done but she is going to try to pinpoint when I may have got hiv to see if I need to be concerned. She really didn't expand on that so that's why it is on my mind so much.
I also have a headache since starting meds yesterday. It's fairly mild and I assume it's stress or my meds. I can deal with it. It's the rest of my life stuff I'm struggling with.  I don't know if she was tested during pregnancy. I know they are supposed to ask if she wanted testing. I don't recall if it happened or not. They may have assumed because it was a long term relationship that it wasn't needed. I don't know. I hope they did test.
I also want to say thank you. I see you replied to many posts people make as they feel lost and looking for help. It means a lot to me and I'm sure it's meant a lot to them too.

Virgo, thanks for replying. I do understand about cd4 and aids but I'm still wrapping my brain around it because till yesterday I thought once you have aids there was no going back. That's what I was taught as a kid at the beginning of the aids pandemic. So it was a shock to me. I am glad that it isn't necessarily true and once the virus is suppressed my count might go up. It sounds like it might take a few years and I worry about getting sick with something while my immune system is so low. I think that would only be natural to worry about. I appreciate you replying to me and trying to make me feel better, and it has helped so thank you. I just have a lot on my mind and my mind wonders to all the possibilities, including the worst

[Jim Allen]

Hiya,

The doctor may try to rule out recently acquired HIV, by running a RITA test. However, all it can do is indicate whether you may have been acquired HIV within the last four to six months. There is no way to say when you acquired HIV, an old infection could mean anything from 6 months to a decade.

I don't know if she was tested during pregnancy. I know they are supposed to ask if she wanted testing. I don't recall if it happened or not. They may have assumed because it was a long term relationship that it wasn't needed. I don't know. I hope they did test.

It would have been recommended by the healthcare provided, it's pretty routine to run the test regardless of relationship status.

I also want to say thank you. I see you replied to many posts people make as they feel lost and looking for help. It means a lot to me and I'm sure it's meant a lot to them too.

You're welcome, glad to help, no thanks required.

It sounds like it might take a few years and I worry about getting sick with something while my immune system is so low.

Many of the members here including myself have had lower CD4 counts and can appreciate how you may feel right now. Look once the virus is suppressed your CD4 counts may go up, they do for most by 100 points in the first year or so. It also depends on age, gender, etc.

No need to stress though, you have the antibiotics and once your counts get back over 200, the counts become rather irrelevant as long as the virus remains suppressed. 

https://www.poz.com/basics/hiv-basics/starting-hiv-treatment
https://i-base.info/rita-test/
https://www.verywellhealth.com/new-hiv-infections-and-old-ones-can-doctors-diagnose-3132618
https://www.hpsc.ie/a-z/hivandaids/hivrecentinfection/hcp01025%20rita_english.pdf

[Michael78]

Yeah that may be what she's doing test wise. She is curious if I am at the beginning of the illness or the end (obviously not counting treatment) due to my daughter and my ex and risks they may be faced with or if it is from a short relationship I had this summer with someone who has medical issues. It kills me to think of who I may have passed this to.

[daveR]

Hi Michael and welcome to the forum. Seems like a strange thing to say knowing what this part of the forum is all about. Sorry to hear about your diagnosis, it can be a bitter pill to swallow, but just remember you have started on a path millions are walking down. You may not have friends or family to discuss this with but you will find plenty of help and advice from members here. All of whom started in the same place as you. Some of us had better figures, some had worse.

Take care of yourself.
Dave

[ajay1980]

Awe Michael, I read your post and felt for ya.  When I was diagnosed it felt like the air was different and the world was ending and I can't imagine the added concern of a family member possibly being exposed. But I do know that the only thing that helped me was educating myself and giving myself time to move through this in my own way and in my own time.  We all process things differently, so you'll find your path in handling this new challenge.  We are all here to support ya! Sending a socially distanced air hug your way!