Emotionally stressed!

[arber_B]

Hello Everyone,

So, It has been 10 weeks since my initial HIV test, 9 weeks since the confirmation test came back, and 8 weeks since I started biktarvy. Any way, I know the new condition is gonna take sometime to be dealt with, but today in particular was extra hard. I have some many questions and concerns, and I have no idea what to start with or where to go to seek answers.

To give a background: My initial numbers were as follows: CD4: 456, CD4% 19, VL 239! Last week test showed that the treatment is working CD4% is 28% now, but I am still waiting for my VL. However, AST and ALT reading were very high (which is not good). I am still waiting for my doctor to call back and see what to do about this. I was excited to see good results, but this made me worry so much. Why did my liver enzymes went high so fast. I mean, I understand that HIV meds are toxic and that I might get liver or kidney damage from them, but I did not know that it would show so quickly.

I thought I somehow coped with this, I was convincing myself it is one pill, you take it in the morning and you move on with your day, but it is not working. The more I read about HIV, the more my head starts wondering in the darkest places. For instant, I read that even at undetectable levels, the virus is still damaging your body. I read that even during the first weeks of infections, your brain size is decreased. Recent studies have even shown that most of hiv reservoir are formed when one starts the treatment that should help control the virus. I know that taking meds and having undetectable levels of HIV means slower damage and they are better than the alternative but still!

I keep dwelling over my last visit to the doctor when my HIV test was conducted and it came back neg, my doctor did less than a good job. When I asked how many times I should test for HIV, he said, once a year is enough. I wish I had the courage to ask for prep but I did not and I am angry at myself. I cannot not think about this!

I am anxious about so many other things and I just do not know if I could do this. 

[Jim Allen]

Hiya,

Sorry to hear that you are stressing about this.

You have just started treatment and still digesting the diagnosis, it can be overwhelming, but you are not alone, we have all gone through diagnosis stage and many of us have felt overwhelmed particularly during the first 6 months. I think these feelings often come in waves and ups & downs would be relatively normal, although, support can't hurt. On that topic are you getting any face to face support from a professional and/or have you considered joining any face to face peer support groups? 

Last week test showed that the treatment is working CD4% is 28% now

The CD4% is not a direct indicator the treatment is working, the VL would be, now nobody has a crystal ball but with the modern treatment available to you and they are definitely not "toxic",  but if a combination is causing more than just settling in side effects for you than there are other combinations you can try until you find what works well for you.

Regarding the liver test, it's one result, as mentioned in other thread where you posted this concern, no reason to panic over a single lab result, just retest and see what happens.

The more I read about HIV, the more my head starts wondering in the darkest places. For instant, I read that even at undetectable levels, the virus is still damaging your body. I read that even during the first weeks of infections, your brain size is decreased. Recent studies have even shown that most of hiv reservoir are formed when one starts the treatment that should help control the virus.

I understand you are reading up, but perhaps don't get stuck on things that if they do happen have already happened and are outside of your control, instead, I would focus on either those things that are within your control (diet, lifestyle, exercise) and those things that pardon the pun are "positive", an example would be that with treatment the life expectancy is near normal, so it can't be all that bad. In addition, you started treatment early and you have the benefit over the HIV negative folks that with our regular check-ups in life if something happens odds are you can pick up on it early. *   

Take it easy, best Jim.

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

[Loa111]

Don't worry, things get easier as time passes. I'm 18+ months in now, from an advanced condition too. Everything is normal, however I do get days it is in my head more, or how did I get this, or why me. and all similar BS, but it's really just chatter in my head and it does not stop me getting on with things. So for you and me too more time under our belt will ease this.

When I started treatment, I soon developed high readings on my Liver Test. ID Doc wasn't sure if it was the antibotics I have to take for an advanced Dx or the Genvoya I was on. Anyway, several changes of meds, and Liver Test results decreased to normal and continue to be normal. It was no big deal, only niggle was I kept having to go back to the clinic for more blood tests every few weeks until LT values settled. So don't worry, there will be a solution for you too, if it even goes this far.

[Mindless]

but it's really just chatter in my head and it does not stop me getting on with things.

Perfect and simple analysis, it’s basically psychotherapy in a nutshell. Completely agree, even if I have to admit it’s not so simple to practice all the time. Still, keeping in mind this simple concept would avoid dwelling too much on what we can’t change and instead focusing our energy on what we actually have power on. We can’t go back in time and change the past but we can affect the future acting on things in our power today.

As for the liver values: I got similar results at my first blood check after starting meds. At the next check after 3 months everything was normal and stayed like that till nowadays.

Hugs

[Mindless]

PS: for your reference my nr after dx were CD4 320, CD4% 14, VL 175,000

[arber_B]

I want to thank everyone who took the time to respond to this. I live in a small town and there are not lots of support groups or such. So, this venue is the only one I have. I totally understand that most of it is in my mind. When I am busy at work, or at the gym, the topic does not come to my mind as much as when I am alone or not busy. Again thank you! My doctor wants me to do the liver test again tomorrow, so we will see.

on a "positive" note, VL came back today undetectable.

[Mindless]

on a "positive" note, VL came back today undetectable.

Congrats!

[arber_B]

Hiya,

Sorry to hear that you are stressing about this.

You have just started treatment and still digesting the diagnosis, it can be overwhelming, but you are not alone, we have all gone through diagnosis stage and many of us have felt overwhelmed particularly during the first 6 months. I think these feelings often come in waves and ups & downs would be relatively normal, although, support can't hurt. On that topic are you getting any face to face support from a professional and/or have you considered joining any face to face peer support groups? 


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

Thank you Jim! you are so kind. I do not have face to face support. Small town here!

[arber_B]

Don't worry, things get easier as time passes. I'm 18+ months in now, from an advanced condition too. Everything is normal, however I do get days it is in my head more, or how did I get this, or why me. and all similar BS, but it's really just chatter in my head and it does not stop me getting on with things. So for you and me too more time under our belt will ease this.

When I started treatment, I soon developed high readings on my Liver Test. ID Doc wasn't sure if it was the antibotics I have to take for an advanced Dx or the Genvoya I was on. Anyway, several changes of meds, and Liver Test results decreased to normal and continue to be normal. It was no big deal, only niggle was I kept having to go back to the clinic for more blood tests every few weeks until LT values settled. So don't worry, there will be a solution for you too, if it even goes this far.

Hi Loa11, I hear you it is all the BS in my head and some other stresses. When I am at work or at the gym and not thinking about this, I am more or less good. It is when I get home and my mind starts wondering. I am known to be the guy who thinks with the worst case.

What are you on now? I kinda like biktarvy, stupid side effects at the beginning but all in all good. I hate to start a new drug.

[arber_B]

Perfect and simple analysis, it’s basically psychotherapy in a nutshell. Completely agree, even if I have to admit it’s not so simple to practice all the time. Still, keeping in mind this simple concept would avoid dwelling too much on what we can’t change and instead focusing our energy on what we actually have power on. We can’t go back in time and change the past but we can affect the future acting on things in our power today.

As for the liver values: I got similar results at my first blood check after starting meds. At the next check after 3 months everything was normal and stayed like that till nowadays.

Hugs

Hello! What are you on now? And just as that, your liver enzymes went back to normal? That is great news!

[Jim Allen]

Thank you Jim! you are so kind. I do not have face to face support. Small town here!

I would recommend talking to your case manager about this, regional NGO and asking the doctor if you have not already.

You would be surprised about support groups or even social meeting groups. I lived in a town with less than 8.000 people and an hour away from anything not rural yet there were groups, although, I also had a time in my life that I used to drive 90 mins out and 90 mins back, once a month to attend a particular group because it was worth it. 

[Mindless]

Hello! What are you on now? And just as that, your liver enzymes went back to normal? That is great news!

Hi, I was on Atripla when I started, then I switched to Complera (generic 2 pills version) after 1 year and I'm still on that. I have to add I live in Thailand and not many alternatives are available here at affordable prices. Got my dx about 2.5 years ago.
Yes my liver values went up during the 1st month: Dr was slightly worried but told me to wait the next check at 3 months and actually he was right, values went back to normal range.

Hugs

[lightalltheway]

arber_B

Receiving the news of a positive diagnosis is a hard moment. It is a moment where life is before the news is something and right after is completely something else. Having said that, this does not mean at all that the next chapter is bad or less joyful.

It is a true moment to reflect on your true self and seek a better version of yourself. I completely understand the dark places your brain visits when you age the web, a page over the other. But please be careful about two things: 1. The source 2. The dates.

HIV management as a medicine of study is relatively new and still witnessing a rapid growth in the process of knowledge production. Medication are safe with a huge half life period which gives us more freedom and control. We live in a lucky era in which a controlled HIV is better than Diabetes. That's science and it should make you relief when in doubt.

This forum is heaven for HIV positive members and their partners. We are a big family that support each other and share our daily experience's. Please use this wealth of information, it aided me when I was diagnosed and I am sure it will aid you, too.

Lastly, my doctor once told me: HIV is a virus that likes attention, we are here to control everything.

I hope after reading these lines you will feel better. Please write to us always, you're never alone.

Prince.

[Mindless]

arber_B

Receiving the news of a positive diagnosis is a hard moment. It is a moment where life is before the news is something and right after is completely something else. Having said that, this does not mean at all that the next chapter is bad or less joyful.

It is a true moment to reflect on your true self and seek a better version of yourself. I completely understand the dark places your brain visits when you age the web, a page over the other. But please be careful about two things: 1. The source 2. The dates.

HIV management as a medicine of study is relatively new and still witnessing a rapid growth in the process of knowledge production. Medication are safe with a huge half life period which gives us more freedom and control. We live in a lucky era in which a controlled HIV is better than Diabetes. That's science and it should make you relief when in doubt.

This forum is heaven for HIV positive members and their partners. We are a big family that support each other and share our daily experience's. Please use this wealth of information, it aided me when I was diagnosed and I am sure it will aid you, too.

Lastly, my doctor once told me: HIV is a virus that likes attention, we are here to control everything.

I hope after reading these lines you will feel better. Please write to us always, you're never alone.

Prince.

I’m not the supposed recipient but.... these are really words of solace. Thank you indeed 🙏🏻🙏🏻

[lightalltheway]

I’m not the supposed recipient but.... these are really words of solace. Thank you indeed 🙏🏻🙏🏻
[/quote]

Youre more than welcome