Feeling better mentally

[sofeternal]

Hi.

For some reason my older post got wiped out I’m not so sure why as I was looking to add this reply on it.

I write here because I have not told anyone about my diagnosis which I got results today by the way, my CD4 is at 752, I missed my VL cause i didn’t take the results with me. I don’t want any traces of all this outside the hospital except for the pills ofcourse. I’m on one pill but they mentioned it is a combination of 3. They counseled me for a while as I was in really bad shape mentally.

I still have anxiety when I think about it but I’m kinda developing this new sense of bravery on my perspective about life. I’m coming to realization that very few things are meaningful in this life and we already have them. But we keep chasing a lot of unnecessary things.

I’m 30. I hope I’ll live a long life. Healthy life. I want to marry still and have a family. I don’t want anyone to know about this including my future wife. I don’t know how I’ll manage that. I’d love to hear about people who’ve lived with HIV the longest. It’ll help wrap my head around this is not a death sentence.

Love.

[Jim Allen]

Hiya

I sent you an email, if you could reply to that it would be appreciated. Thank you.

[Jim Allen]

Hiya,

Thanks for getting back to us. It was good to clarify and resolve some misunderstandings, and I am glad we straightened out some stuff like transmission. So we will leave it at that.

Hi.

For some reason my older post got wiped out I’m not so sure why as I was looking to add this reply on it.

I write here because I have not told anyone about my diagnosis which I got results today by the way, my CD4 is at 752, I missed my VL cause i didn’t take the results with me. I don’t want any traces of all this outside the hospital except for the pills ofcourse. I’m on one pill but they mentioned it is a combination of 3. They counseled me for a while as I was in really bad shape mentally.

I still have anxiety when I think about it but I’m kinda developing this new sense of bravery on my perspective about life. I’m coming to realization that very few things are meaningful in this life and we already have them. But we keep chasing a lot of unnecessary things.

I’m 30. I hope I’ll live a long life. Healthy life. I want to marry still and have a family. I don’t want anyone to know about this including my future wife. I don’t know how I’ll manage that. I’d love to hear about people who’ve lived with HIV the longest. It’ll help wrap my head around this is not a death sentence.

Love.

I'm glad to hear you have access to treatment. What treatment are you on? Is it TLD tenofovir disoproxil, lamivudine and dolutegravir?

You are young and have started treatment before HIV could cause any serious issues or damage. HIV with treatment isn't a barrier to a long and healthy life or marriage and starting a family.

As for not telling a future wife, I'm not sure about the legal situation in your nation, but I feel starting a relationship without sharing your HIV status is a mistake and getting married without telling is just drama waiting to happen.

Regarding the viral load, as you have started treatment and your initial CD4 count was perfectly fine the CD4 counts going forward aren't that important anymore, however, the viral load is what really matters as that is how you know from now on if the medication is working to suppress the virus and stop it from causing harm.

I know you have an appointment within a few weeks, so keep us posted on the viral load counts, until you have the viral load we'll ask you to only post in this thread, however, the other forum members can reply here and offer you support and their insights so feel free to ask questions, vent or raise any concerns you might have here.

Best, Jim.

[sofeternal]

Yes I’m on TLD. Thanks for your input Jim. I feel like I have been having more gas than usual is it normal? I start the pill tomorrow as I wanted to start taking it in the morning

[Jim Allen]

So some gas and bloating can happen for several reasons in people with HIV, however, this doesn't really apply to you.

Not everything that will happen is related to your HIV status, although, the stress, not sleeping or eating from the past few days certainly could cause some gastrointestinal distress. I hope it settles soon but if the issue persists talk to your doctor.

Yes I’m on TLD

TLD is good stuff, my treatment is very similar.

[sofeternal]

What do you guys know about Lenacapavir? I’ve tried to find information on existing and trial meds.

[sofeternal]

Also these talks of a cure. How do you manage to remain hopeful and realistic at the same time? When creditable sources such as NYTimes and Forbes or Bill Gates speak about finding a cure in the next 5-10 years.

I’m really trying to find a balance here on expectations.

[Jim Allen]

What do you guys know about Lenacapavir? I’ve tried to find information on existing and trial meds.

Currently, Gilead is charging over $40,000/year for lenacapavir.

Following the Capella study it was approved for people with a multidrug-resistant virus, they get Lenacapavir injections + optimised daily pills. The most recent study to publish data that comes to mind was in June & July, and the PURPOSE Phase 3 results on its usage as Injectable PrEP.

In March some phase 2 data was published on a once-a-week pill (islatravir + lenacapavir) don't get your hopes up.

Capella trial
https://forums.poz.com/index.php?topic=75017.msg

Promising results phase 2 - Once Weekly Pill for HIV treatment.
https://forums.poz.com/index.php?topic=77707.msg

PURPOSE Phase 3
https://forums.poz.com/index.php?topic=77896.msg

Generic Name: lenacapavir
https://www.poz.com/drug/sunlenca

https://i-base.info/htb/48224

[Tonny2]

                    ojo.            @sofetermal…I’m glad you are feeling better mentally, you are on your way to learn how to live with hiv. Nowadays, after accepting your status , you will live a normal life so normal that you can start a family. You are a young person with a whole life ahead of you you just have to either being a fighter or feeling sorry for yourself. THERE IS LIFE AFTER GETTING AN HIV DX…telling someone about your health issues, hmmm?, I’m not telling everybody about my hemorroids complication even when people ask me if I’m a cowboy for the way I walk, lol. The only person you have to be honest about your hiv positive is precisely the person that you want to have family with. If you start a relationship with a lie, you're problem is snug going to be HIV, comprende?... stop wasting your time reading about The Cure, to me, one pill a day is a cure specially when you can keep living a normal life, my humble opinion… You are starting with good numbers  which means  your immune system is healthy. if you want to put all this in perspective, read my  thread, I was 32 when I got my AIDS dx and I’m srill here after 30 years since my dx… wishing you the best. Now that you are positive you got to be more positive about life because there is something, is your smart person, that you will learn when living with this condition… Please keep us posted. Hugs



Ps. i’m sorry for the typos

[Jim Allen]

I'm with Tonny2 on this one.

stop wasting your time reading about The Cure, to me, one pill a day is a cure specially when you can keep living a normal life, my humble opinion… You are starting with good numbers  which means  your immune system is healthy.

Also these talks of a cure. How do you manage to remain hopeful and realistic at the same time? When creditable sources such as NYTimes and Forbes or Bill Gates speak about finding a cure in the next 5-10 years.

I’m really trying to find a balance here on expectations.

Prehaps this is a good thread for you to read: "Are you concerned about finding a cure?" https://forums.poz.com/index.php?topic=77926.msg

Every few years over the past 40 years someone says it will be cured within 2,3,5 or 10 years it's a great way to get funds and attention and we're still waiting...

Anyhow, I have some views on this, I will not retype all of them and plenty of people disagree with me and that's perfectly fine, but I quoted some of my previous comments below. As for having a balance between hope and expectations, here is mine, you have a functional cure, take a pill a day and move on with your life, focus on living and enjoying your time here, as for a cure if it happens it happens but don't waste any time focusing or hoping for something that doesn't yet exist. 

https://forums.poz.com/index.php?topic=77926.msg

Every 2-3 years for the past 40 years they have promised a new cure for PLHIV is close due to some breakthrough novel developments or technology or worse yet they keep flogging a dead-end as if its new, anyhow, were still nowhere closer

https://forums.poz.com/index.php?topic=77502.msg

there has always been and will continue to be some breakthrough technology and novel approach promising a cure around the corner that fails, and we learn a lot from it. As exciting as these things are from a scientific point of view, I never expected any of them to deliver a cure despite the hype from investors, the media or the community over the decades. I don't see it happening within my lifetime, certainly not with the current developments.

EBT 101
https://forums.poz.com/index.php?topic=75593.msg

[sofeternal]

Thanks guys. I really appreciate you. Yesterday night my mood went down. I’m back to feeling anxiety. I’m feeling way too restless. I’m scared. I hope it gets better. Took my pill early in the morning

[Jim Allen]

you are still digesting the news and the idea of living with a manageable condition, it's a lot to take in at first and having some ups and downs is pretty normal. Things will settle.

[sofeternal]

Thanks Jim. What keeps you going? And does the meds give a lot of diarrhea or it’s my diet? Care to share what diet you do? Apologies for a lot of questions

[Jim Allen]

I live on a wet grey miserable damp island and a diet is going to be somewhat influenced by things like location, culture, availability, quality and the cost of food, so my diet is mainly local meat, farm-fresh eggs, dairy, and vegetables, some berries when in season. I don't eat fish, frozen foods or premade crap and I stay far away from imported fruit.

As for diarrhoea, no the meds don't give me that. The meds nowadays are very good although some people do experince some diarrhoea after the first couple of days when starting treatment but that normally settles down as they adjust to their meds.

What keeps you going?

What keeps me going? Busy living and its just HIV, so I take a pill a day and move on with my life, I've got plenty of other things happening in life that are a real challenge.

[Tonny2]

                 ojo.           Hello there!… You are going to have good days and bad days. Try to keep yourself busy, go back to do what you used to do before your diagnosis. I know that it sounds easy to say that to do it, but it’s all that we can tell you to do. If you think that you can’t handle this on your own, sick professional help… Just take it easy… Hugs

[Tonny2]

                ojo.              @sofetermal, by the way, I sent you a PM. Please read it… you are going to be fine just hang in there…hugs

[sofeternal]

Thanks Jim. I was a little concerned if I should change my diet or add some foods idk.

Tonny, I’m not sure if I can see where my PM are.. apologies I’m new to the platform

[Jim Allen]

Thanks Jim. I was a little concerned if I should change my diet or add some foods idk.

I see.

Living with HIV doesn't require a specific diet, living healthier regardless of HIV status isn't a bad idea though and diet is part of that. However, I can't make specific recommendations, I don't know your current diet, your dietary or other medical needs etc and even if we did know nobody here can give you a specific unbiased or qualified answer.   

If you had AIDS there would be a few temporary pointers we could give but you don't have AIDS, your immune system is healthy.

What I do for myself is I cook everything from scratch, it's reasonably balanced and nearly everything is fresh locally produced. Once a month I admit, I do eat McDonald's, my guilty sin.

There is an easy-to-read article on HIV and nutrition that might help answer your questions.

HIV and Nutrition
https://www.poz.com/basics/Hiv-basics/hiv-nutrition

https://forums.poz.com/index.php?topic=2276.0

[sofeternal]

Thank you Jim. I’m just trying to make sure I’m at my best shape possible. I slept better tonight, although I struggle with the idea of being poz when I’m awake. But I’m doing my best.

[Tonny2]

             ojo.         @sofeternal, I was hoping that Jim were explained to you how the PM System works but anyway. It’s normal you are feeling and thinking about your status every day. You are still new to this, but you had to keep yourself busy, I don’t know what do you used to do before your diagnosis, try to go back to live your life and the sooner, you adjust your diagnosis to your life the better for you to take back control of your life again. We can’t change the past the only thing we need to do to keep making plans for the future is to take your medication as prescribed and keep living your life as usual.… Wishing you the best and you are not alone we are here for you every time and anytime you need it… Hugs


PS. Sorry for the typos and the short message. I have no feeling to get today.

[Tonny2]

PS. Sorry for the typos and the short message. I have no feeling to get today.

     Ps. sorry for the typos and that short message. I wasn’t feeling well.*

[sofeternal]

Thank you Tonny. I am trying to pull myself of it and go on with life as usual. I’m so sorry for how you’re feeling, hope you feel better. Do you have a support system? Like family or friends?

[Tonny2]

                 ojo.           Hi there!….i’m feeling better  now, I just came back from Cancun, Mexico and I came back with flu like symptoms.

I feel sad for the way your are feeling about your dx, it will get better, trust me but you have to be strong and resilient…my support group is my family, specially, my mother, who has been there for me since the beginning and my ex partner who is stayed with me three more re years after my AIDS dx. I ended the relationship for reason unrelated that my dx. My mantra has always been that there are people with worse cases ndirions that hiv, for example, when I was younger n Cancun l met a guy who has diabetes type 1. And he injects himself insulin 10 times a day and I was surprise when I saw him getting out of the beer cooler his insulin pen and he njecting himself right there, LOL…Like I said, my Family is the only one that knows about my diagnosis.

I am going to try to send you another PM, when you sign in, you will see a notification that you have a message, just click OK and you will see your PM…it takes time to digest the bad news, your dx so we are here for you to help you deal with it…hugs


Ps. Sorry for my typos and I wish I could express myself better but English is my second language. Hang in there.

[sofeternal]

Hi guys.

It’s been 16 days since my dx. 12 days since i started medication. One hell of a ride mentally. I knew i was mentally strong but I didn’t think I’d ever be tested mentally like this in current years, at least.

I tend to wake up with a lot of anxiety but it tones down as the day go. I’m usually not much of a dreamer but I’ve had a lot of dreams lately that revolve around my dx. I have not managed to get myself out of bed as often as I would’ve liked as I find that I have no energy, maybe because of the anxiety. But in return I’ve been spending a lot of screen time on my phone trying to understand HIV better to answer my curiosity.

I’ve come to the conclusion that a huge chunk of HIV related stress, if not all of it comes from stigma. But I guess it’s the world that we live in. The good and the bad. My coping mechanism has been a lot of prayers, I must admit I haven’t been a religious or spiritual person since I was a kid, but it has now really kept me going putting belief in GOD.

I’ve found out that HIV accelerates aging but when I get in here and see comments from leather man saying he feels in better shape than his peers, it really keeps me going. I wasn’t planning on eating healthy or exercise every day before my dx but I have already start to make dieting plans so that once the cure comes out, it finds me in good shape still 🤣 I know Jim and Tonny will be shaking their heads with disappointment from that note.

There’s a pledge to end HIV/AIDS by 2030 which I know most, if not all of us are aware of, I have belief that a sterilizing cure will be out by then. I also believe long term suppression medication rather than daily pills will be out way before then. I welcome disputes on this knowing very well it’s important to have contrasting ideas for balance. We feed from each other in a healthy way cause imagine if we were all one dimensional. Yin yang ☯️

https://www.sciencedaily.com/releases/2024/03/240326124555.htm


Love.

[Jim Allen]

There’s a pledge to end HIV/AIDS by 2030 which I know most, if not all of us are aware of, I have belief that a sterilizing cure will be out by then. I also believe long term suppression medication rather than daily pills will be out way before then. I welcome disputes on this knowing very well it’s important to have contrasting ideas for balance. We feed from each other in a healthy way cause imagine if we were all one dimensional. Yin yang ☯️

https://www.sciencedaily.com/releases/2024/03/240326124555.htm

Beliefs are fine, plenty of people have them, it's nice I suppose, just don't let it stop you from focusing on living your life and taking your meds. Don't get stuck on cures and pledges, you could waste your life on that, have seen it all before.

[Tonny2]

Beliefs are fine, plenty of people have them, it's nice I suppose, just don't let it stop you from focusing on living your life and taking your meds. Don't get stuck on cures and pledges, you could waste your life on that, have seen it all before.

[Dogman]

I live on a wet grey miserable damp island

Must be a different Island that I visited, was sunny and warm for a whole week :-)

[Jim Allen]

Must be a different Island that I visited, was sunny and warm for a whole week :-)

The exception that confirms the rule