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Author Topic: HIV + since December 12  (Read 14213 times)

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Offline Hope4cure38

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HIV + since December 12
« on: January 14, 2024, 06:36:25 pm »
Hello,

I regretfully inform you that I have recently been diagnosed with HIV. My viral load was 64,000 and my CD4 count is 406.

I am 38 years old with no medical conditions apart from having contracted hepatitis A when I was 14.

Mentally, I feel terrible. I feel like I have let down everyone around me, especially my son. I worry that I won't be there for him as he grows up, and this thought is very scary and depressing.

I started taking Vitarkby on December 14, and my next blood work is scheduled for next week.

My doctor has assured me that I can live a long and healthy life as long as I adhere to taking my medication once a day. I am diligent in taking it every day at 1 pm, sometimes within a 5-minute window.

I have been reading a lot online, and it's making me question everything. For example,

What if Vitarkby doesn’t work for me to achieve undetectable status?

Can we remain undetectable for 30-40 years without needing to switch medications?

My doctor asked me if I want to try the injection treatment every 2 months after undetectable for 6 months. Any thoughts on this? Risky?

Will I experience any physical changes?

Does HIV continue to cause damage to our bodies even when we are undetectable?

Am I at a higher risk of developing cancer (liver blood, etc) due to the treatment or having a weakened immune system?

I have had the flu since December 18. Initially, I had a fever for 3 days, then my sinuses were completely congested, and now I am still dealing with a cough. I have never been sick for this long. Are people with HIV more susceptible to getting worse illnesses than others?

What are the chances of there being a cure in the near future?

I apologize for all the questions. I honestly feel very depressed, and I can't even bear to look at myself in the mirror. I am a victim of my own stigma.

Offline leatherman

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Re: HIV + since December 12
« Reply #1 on: January 14, 2024, 07:56:29 pm »
My doctor has assured me that I can live a long and healthy life as long as I adhere to taking my medication once a day.
Your doctor is completely right. Take your daily HIV meds and you'll live as long as others in your family.

----What if Biktarvy doesn’t work for me to achieve undetectable status?
It will work. All modern HIV meds work as long as they are taken every day.

----Can we remain undetectable for 30-40 years without needing to switch medications?
sure can!

----My doctor asked me if I want to try the injection treatment every 2 months after undetectable for 6 months. Any thoughts on this? Risky?
It's not risky and it only depends on if a 2mo injectable is easier for you.

I prefer not having to travel to my doctor every two months for the shot. It's easier for me to take daily pills and only see the doctor a few times a year.

----Will I experience any physical changes?
Nope.

----Does HIV continue to cause damage to our bodies even when we are undetectable?
Some; but not enough to you to worry about.

----Am I at a higher risk of developing cancer (liver blood, etc) due to the treatment or having a weakened immune system?

----Are people with HIV more susceptible to getting worse illnesses than others?
Nope.

----What are the chances of there being a cure in the near future?
the chances are slim to none; however with only having to take 1 pill a day, a cure isn't that big a deal

I honestly feel very depressed, and I can't even bear to look at myself in the mirror. I am a victim of my own stigma.
I hate that you feel that way right now; but you won't always feel this way. As some time goes by you'll see that this is a one of a million diseases you could have gotten infected with, and thankfully here in 2023 it's an easily managed disease. Trust me, when you've been on meds for 25 years (like me) and are into your 60s (like me), these beginning days will be an almost forgotten distant memory. ;)

Take your meds, get on with your life, and enjoy life!
leatherman (aka Michael)

We were standing all alone
You were leaning in to speak to me
Acting like a mover shaker
Dancing to Madonna then you kissed me
And I think about it all the time
- Darren Hayes, "Chained to You"

Offline Hope4cure38

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Re: HIV + since December 12
« Reply #2 on: January 14, 2024, 08:54:40 pm »
Thank you so much for taking the time to answer my questions, I’m sure some of my questions are annoying because the answer is on google however I’m just very nervous.


Do you think my CD4 count was low? 406 I tested negative in October 1 so we could say I found out I had it in the early stage… but my CD4 doesn’t seem to be high (judging it could be 1500) and my virus load is 60k

I have been sick for almost a month with what it seems to be a flu, do you think this is related to HIV?


Again I’m sorry for asking too many questions I feel stupid but very depressed at the same time
« Last Edit: January 14, 2024, 08:59:04 pm by Hope4cure38 »

Offline Jim Allen

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Re: HIV + since December 12
« Reply #3 on: January 15, 2024, 03:41:33 am »

Quote
Do you think my CD4 count was low?

No.

Quote
I tested negative in October 1 so we could say I found out I had it in the early stage

Well, the good thing is you started treatment within four to five months of acquiring HIV, so before any serious damage occurred. That's the benefit of early diagnosis and treatment.

Quote
I have been sick for almost a month with what it seems to be a flu, do you think this is related to HIV?

No, it sounds like recovering from the Flu or RSV virus. If you are still feeling unwell and concerned, contact your healthcare provider.

Quote
Will I experience any physical changes?
Quote
My doctor has assured me that I can live a long and healthy life as long as I adhere to taking my medication once a day.

Yeah, thanks to the meds, you are not going to die. As a result, you will continue to live and age and, at some point, experience age-related issues like hair loss, weight changes, hearing and eyesight changes, wrinkles, sore joints, etc.

If you are concerned about your health, then focus on what you can do, not what you can't do or change. So you can exercise, drink less alcohol, don't smoke, get rest & sleep, and eat healthier.

When do you have your next appointment? Prehaps write down any questions you have for the doctor so you don't forget to ask them during your next visit.
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Read more about Testing here:
HIV Testing
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Offline Tonny2

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Re: HIV + since December 12
« Reply #4 on: January 15, 2024, 12:30:00 pm »


         ojo.           @hopefir thecure38… welcome to the forum, and I’m sorry for your diagnosis, but now that you know that you have the virus, you treat it. I’ve been waiting for the cure for 29 years, so, if I can give you some advice, just concentrate on taking your one pill a day lifesaving treatment… you are not alone we are here for you, any questions you may have of you just want to rent. We are here for you… your Cd4 level is skirt, and it’s gonna be better on your next bloodwork results. Start making plans for the future because you are going to be around to see your child grow with you… again, we are here for you; please keep us posted and good luck…hugs
« Last Edit: January 15, 2024, 01:18:49 pm by Jim Allen »

Offline Hope4cure38

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Re: HIV + since December 12
« Reply #5 on: January 16, 2024, 09:38:32 am »
No.

Well, the good thing is you started treatment within four to five months of acquiring HIV, so before any serious damage occurred. That's the benefit of early diagnosis and treatment.

No, it sounds like recovering from the Flu or RSV virus. If you are still feeling unwell and concerned, contact your healthcare provider.

Yeah, thanks to the meds, you are not going to die. As a result, you will continue to live and age and, at some point, experience age-related issues like hair loss, weight changes, hearing and eyesight changes, wrinkles, sore joints, etc.

If you are concerned about your health, then focus on what you can do, not what you can't do or change. So you can exercise, drink less alcohol, don't smoke, get rest & sleep, and eat healthier.

When do you have your next appointment? Prehaps write down any questions you have for the doctor so you don't forget to ask them during your next visit.


Thank you! My next appointment is next week, I really hope I’m undetectable already but it’s been only 4 weeks, I read it take anywhere from 3-6 months.

Offline Hope4cure38

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Re: HIV + since December 12
« Reply #6 on: January 16, 2024, 09:41:48 am »

         ojo.           @hopefir thecure38… welcome to the forum, and I’m sorry for your diagnosis, but now that you know that you have the virus, you treat it. I’ve been waiting for the cure for 29 years, so, if I can give you some advice, just concentrate on taking your one pill a day lifesaving treatment… you are not alone we are here for you, any questions you may have of you just want to rent. We are here for you… your Cd4 level is skirt, and it’s gonna be better on your next bloodwork results. Start making plans for the future because you are going to be around to see your child grow with you… again, we are here for you; please keep us posted and good luck…hugs

Thank you Tonny, I’m very lucky you guys decided to answer my post. What do you mean when you say my cd4 is a skirt?

Thank you so much for sharing your knowledge

Offline leatherman

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Re: HIV + since December 12
« Reply #7 on: January 16, 2024, 10:55:43 am »
Do you think my CD4 count was low? 406 I tested negative in October 1 so we could say I found out I had it in the early stage… but my CD4 doesn’t seem to be high (judging it could be 1500) and my virus load is 60k
really, once you're over 200 cd4s, it doesn't really matter. Here's why:

1. a "normal" cd4 count is anywhere from 400 to 1500. That's a huge range.

2. cd4s can change by 100 points in one day.

3. your "normal" cd4 is based on your genetics, so everyone's is different

4. cd4 count is only a count of how many cd4s you have not how strong they are. (there is no way to measure that). so some people with strong small amounts of cd4s may be very healthy. some people will high cd4 counts can get sick.

5. There is no way, besides having a healthier diet and exercising, to improve a cd4 count....and that wouldn't be much of a change. (remember, they're genetic. not something you have a lot of control over)

5. a cd4 count is just a snapshot in time, and changes frequently. To get a better feel of "how" your cd4s are doing, you need to look at the trend of at least 3 tests over at least 6 months.
leatherman (aka Michael)

We were standing all alone
You were leaning in to speak to me
Acting like a mover shaker
Dancing to Madonna then you kissed me
And I think about it all the time
- Darren Hayes, "Chained to You"

Offline Jim Allen

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Re: HIV + since December 12
« Reply #8 on: January 16, 2024, 11:15:06 am »

Thank you! My next appointment is next week, I really hope I’m undetectable already but it’s been only 4 weeks, I read it take anywhere from 3-6 months.

As long as the viral load has started reducing, the meds are working. I am sure the viral load will be reduced, and that's all that matters at this stage; having a suppressed viral load (below 200 copies) can take time, and that's okay.
HIV 101 - Everything you need to know
HIV 101
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

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Offline Tonny2

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Re: HIV + since December 12
« Reply #9 on: January 16, 2024, 01:21:25 pm »


          ojo.         @hope4cure…”your cd4 level is GOOD”…sorry for the typo, I’m legally blind so I use my cell’s dictation option and it has its own agenda, confuse my buddies, lol…the secret to control the lovely and faithful virus is discipline in taking your medication as prescribed, oh, I am view you, I take a pills a day while you take your one, lol, and have a good attitude because the virus is here to stay with you and with us for a long time… I hope that you learn to live with the virus ,the sooner the better…hugs and please keep us posted.

Sorry for the typos

Offline Jim Allen

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Re: HIV + since December 12
« Reply #10 on: January 16, 2024, 07:31:33 pm »
HIV medically is relatively simple: take your meds and live your life.

My advice is to plan for the future and old age, look after your body as best you can and, more importantly, focus on your mental and emotional well-being.
HIV 101 - Everything you need to know
HIV 101
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

My Instagram
Threads

Offline Tonny2

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Re: HIV + since December 12
« Reply #11 on: January 17, 2024, 01:01:09 pm »
Hello,

I regretfully inform you that I have recently been diagnosed with HIV. My viral load was 64,000 and my CD4 count is 406.

I am 38 years old with no medical conditions apart from having contracted hepatitis A when I was 14.

Mentally, I feel terrible. I feel like I have let down everyone around me, especially my son. I worry that I won't be there for him as he grows up, and this thought is very scary and depressing.


                Ojo.        Hello again. I just read this and I like it. 


He who suffers before it is necessary, will suffer more than necessary“
Seneca

« Last Edit: January 17, 2024, 01:03:57 pm by Tonny2 »

Offline Hope4cure38

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Re: HIV + since December 12
« Reply #12 on: January 17, 2024, 03:02:11 pm »
Thank you Gents! Your comments really help.

People still die because of HIV in today’s days? (I’m talking about the people who are on treatment)

Offline leatherman

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Re: HIV + since December 12
« Reply #13 on: January 17, 2024, 03:29:52 pm »
People still die because of HIV in today’s days? (I’m talking about the people who are on treatment)
sometimes those who are diagnosed late, don't fare so well. A lot depends on how sick they were at diagnosis and what other health issues they might have. Even though HIV meds are pretty much a miracle and bring a lot of people back from near death, not everyone is so lucky.

As for those on treatment, sure, because we all die....eventually.  ;)

For my peer group (those diagnosed before any HIV meds), those who survived with the first meds, are mostly still kicking here in our 60s and 70s. Of course, every year that we get older, slowly but surely, some are starting to leave us - but that's old age for ya.  ;)

So daily take the new nice fancy meds we have now, and expect to live for as long as your health and genetics allow you. (Personally, with all my relatives living into their late 90s and early 100s, at 62 I'm just a little past middle age!  ;D )
leatherman (aka Michael)

We were standing all alone
You were leaning in to speak to me
Acting like a mover shaker
Dancing to Madonna then you kissed me
And I think about it all the time
- Darren Hayes, "Chained to You"

Offline Tonny2

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Re: HIV + since December 12
« Reply #14 on: January 17, 2024, 04:22:25 pm »
Thank you Gents! Your comments really help.

People still die because of HIV in today’s days? (I’m talking about the people who are on treatment)



             ojo.           Yes, there are people who are still dying from opportunistic infections due to aids, but it is because either they don’t have a good treatment or not treatment at all. Fortunately, for you, you have a good treatment you say that you are in a pretty good health. Nobody dies before his or her time, I am a proof of that. If you have read my thread, you will understand. Now that you are positive you got to be more positive about the future because you have the tool to make it happen. Remember, discipline and a good attitude ,You have so much to live for… please gkeep
us posted and hugs

Offline Hope4cure38

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Re: HIV + since December 12
« Reply #15 on: January 18, 2024, 04:07:59 pm »
sometimes those who are diagnosed late, don't fare so well. A lot depends on how sick they were at diagnosis and what other health issues they might have. Even though HIV meds are pretty much a miracle and bring a lot of people back from near death, not everyone is so lucky.

As for those on treatment, sure, because we all die....eventually.  ;)

For my peer group (those diagnosed before any HIV meds), those who survived with the first meds, are mostly still kicking here in our 60s and 70s. Of course, every year that we get older, slowly but surely, some are starting to leave us - but that's old age for ya.  ;)

So daily take the new nice fancy meds we have now, and expect to live for as long as your health and genetics allow you. (Personally, with all my relatives living into their late 90s and early 100s, at 62 I'm just a little past middle age!  ;D )


Wow God bless you my man 🙏 you and Tony have such a great attitude , believe it or not I read your and his comments 5-8 times per day, every time I feel down I login read you guys post, feel a little better and move on for the rest of the day.


I started the process with my GF to have a second kid but the doctor is waiting for my hiv doctor to send him a letter when I become undetectable.


I have to accept myself as a HIV POC and
Move on with my life.

I’m still dealing with congestion on my chest, I have been dealing with a cold since December 18 but it doesn’t go away hopefully is not because my inmune system is compromise 😅


The health Departament contacted me to track my sexual
Record… long story short she told me I should expect to feel any cold harder than negative people because of my HIV that’s why I asked in this thread is I should expect to get sick more often than hiv negative people

Offline Tonny2

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Re: HIV + since December 12
« Reply #16 on: January 18, 2024, 04:28:30 pm »


             ojo.            @hope4cure…I like you want to keep  looking for another baby, life goes on, I guess you are planning for the future. Congratulations!
… if you used to get sick often before your diagnosis is likely that you are going to be sick after your HIV diagnosis. This is not going to be because of hiv if you take your treatments, you are supposed to.
.. I would like to know besides  your cd4 levels, do you know your cd4%?.

Offline Hope4cure38

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Re: HIV + since December 12
« Reply #17 on: January 18, 2024, 05:00:35 pm »
Hello Tonny,

% CD 8 Pos. Lymph is 43.5  H    ref range 12.0-35.5 (%)
CD4/CD8 Ratio 0.72 ref rang 0.92-3.72

These 2 values were marked in red but the doctor didn’t really go over it with me.

My CD4 was 406 when I tested + in December 12
« Last Edit: January 18, 2024, 05:07:33 pm by Hope4cure38 »

Offline Tonny2

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Re: HIV + since December 12
« Reply #18 on: January 18, 2024, 05:27:21 pm »



         ojo.       @hope4cure… I sent U a private message. Please read it.

Offline Hope4cure38

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Re: HIV + since December 12
« Reply #19 on: January 18, 2024, 06:18:29 pm »


         ojo.       @hope4cure… I sent U a private message. Please read it.

Right away!

Offline Dogman

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Re: HIV + since December 12
« Reply #20 on: January 19, 2024, 02:03:44 pm »
Quote
Mentally, I feel terrible. I feel like I have let down everyone around me, especially my son. I worry that I won't be there for him as he grows up, and this thought is very scary and depressing
.

Hi, I'm sorry about the diagnosis, I found out a bit over a year ago that I had it. I will give you my perspective on a few of your points.

1. I had a higher viral load ( 100,000 ) and CD4's a bit below 200. I started on Biktarvy and was undetectable in 3 weeks (weeks, not months), and my CD4's jumped to above 200.  I have since switched to a 2 drug plan, and so far it is working well.

2. The first 6 months I was totally in a mental funk, couldn't focus, couldn't think of anything else. It will ease, it's still there now, I see a picture of me and now I classify them into "Pre" and "Post". I am annoyed that somehow despite following the rules I managed to get it, I am annoyed at so many things....but ...

3. People on this site had it so much worse than we did, I read your responses from the people of whom some replied to me when I came crying to this site, and it made me realize how "lucky" we are in some ways , that we don't have to go through their nightmare ( and this is my description from my perspective ).

4. When I stop and look, my life is no different (apart from 1 pill a day) than it was before I had this and even while I had this and didn't know I had it. (ignorance is bliss, for a while). I feel fine, and I do everything I always did - you will too. I know it's easy to say these things, but it is true.

I apologize for all the questions. I honestly feel very depressed, and I can't even bear to look at myself in the mirror. I am a victim of my own stigma.

I was very depressed, couldn't look at myself in the mirror, everywhere I went I was like "i'm a walking virus" and look at all these people who aren't around me. It's really mentally destructive to think like that. As in other comments, we all have viruses, I'd see people in wheelchairs and think, wow, aren't I lucky. You know what I mean? It's perpsective, and putting things into perspective have helped me relax and breathe and not stress every waking moment. I still have moments, but they lessen with time.

This forum helped me enormously, the advice is real world. I wish you all the best in this new chapter/journey.
[/quote]
« Last Edit: January 19, 2024, 03:18:34 pm by Jim Allen »

Offline Tonny2

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Re: HIV + since December 12
« Reply #21 on: January 19, 2024, 02:38:15 pm »
Mentally, I feel terrible. I feel like I have let down everyone around me, especially my son. I worry that I won't be there for him as he grows up, and this thought is very scary and depressing.

Hi, I'm sorry about the diagnosis, I found out a bit over a year ago that I had it. I will give you my perspective on a few of your points.

1. I had a higher viral load ( 100,000 ) and CD4's a bit below 200. I started on Biktarvy and was undetectable in 3 weeks (weeks, not months), and my CD4's jumped to above 200.  I have since switched to a 2 drug plan, and so far it is working well.

2. The first 6 months I was totally in a mental funk, couldn't focus, couldn't think of anything else. It will ease, it's still there now, I see a picture of me and now I classify them into "Pre" and "Post". I am annoyed that somehow despite following the rules I managed to get it, I am annoyed at so many things....but ...

3. People on this site had it so much worse than we did, I read your responses from the people of whom some replied to me when I came crying to this site, and it made me realize how "lucky" we are in some ways , that we don't have to go through their nightmare ( and this is my description from my perspective ).

4. When I stop and look, my life is no different (apart from 1 pill a day) than it was before I had this and even while I had this and didn't know I had it. (ignorance is bliss, for a while). I feel fine, and I do everything I always did - you will too. I know it's easy to say these things, but it is true.

I apologize for all the questions. I honestly feel very depressed, and I can't even bear to look at myself in the mirror. I am a victim of my own stigma.

I was very depressed, couldn't look at myself in the mirror, everywhere I went I was like "i'm a walking virus" and look at all these people who aren't around me. It's really mentally destructive to think like that. As in other comments, we all have viruses, I'd see people in wheelchairs and think, wow, aren't I lucky. You know what I mean? It's perpsective, and putting things into perspective have helped me relax and breathe and not stress every waking moment. I still have moments, but they lessen with time.

This forum helped me enormously, the advice is real world. I wish you all the best in this new chapter/journey.

Offline Tonny2

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Re: HIV + since December 12
« Reply #22 on: January 19, 2024, 02:46:10 pm »



           ojo.             Hi there… you are right there!…you are right dogman, it’s just a matter a time to learn how to live with HIV, the meantime, we all are allowed to cry, scream, do whatever it takes to get rid of guilt, or whatever we are feeling but, at the end of the day we had to recognize that we had to turn the page, and as you said, there are people in worse situation than us… wishing you all the best, because there is life after HIV diagnosis that is my mantra…hugs

Offline Hope4cure38

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Re: HIV + since December 12
« Reply #23 on: January 20, 2024, 01:49:10 pm »
.

Hi, I'm sorry about the diagnosis, I found out a bit over a year ago that I had it. I will give you my perspective on a few of your points.

1. I had a higher viral load ( 100,000 ) and CD4's a bit below 200. I started on Biktarvy and was undetectable in 3 weeks (weeks, not months), and my CD4's jumped to above 200.  I have since switched to a 2 drug plan, and so far it is working well.

2. The first 6 months I was totally in a mental funk, couldn't focus, couldn't think of anything else. It will ease, it's still there now, I see a picture of me and now I classify them into "Pre" and "Post". I am annoyed that somehow despite following the rules I managed to get it, I am annoyed at so many things....but ...

3. People on this site had it so much worse than we did, I read your responses from the people of whom some replied to me when I came crying to this site, and it made me realize how "lucky" we are in some ways , that we don't have to go through their nightmare ( and this is my description from my perspective ).

4. When I stop and look, my life is no different (apart from 1 pill a day) than it was before I had this and even while I had this and didn't know I had it. (ignorance is bliss, for a while). I feel fine, and I do everything I always did - you will too. I know it's easy to say these things, but it is true.

I apologize for all the questions. I honestly feel very depressed, and I can't even bear to look at myself in the mirror. I am a victim of my own stigma.

I was very depressed, couldn't look at myself in the mirror, everywhere I went I was like "i'm a walking virus" and look at all these people who aren't around me. It's really mentally destructive to think like that. As in other comments, we all have viruses, I'd see people in wheelchairs and think, wow, aren't I lucky. You know what I mean? It's perpsective, and putting things into perspective have helped me relax and breathe and not stress every waking moment. I still have moments, but they lessen with time.

This forum helped me enormously, the advice is real world. I wish you all the best in this new chapter/journey.


Thank you for your msg it really helps, I feel a little better everyday but I’m
Still in a weird place accepting myself.


Did you experience your toungh getting white while taking viktarby? I just woke up with a white toungh, I’m also fighting a cold so maybe it’s because of that

Offline Jim Allen

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Re: HIV + since December 12
« Reply #24 on: January 20, 2024, 02:04:24 pm »
Did you experience your toungh getting white while taking viktarby? I just woke up with a white toungh, I’m also fighting a cold so maybe it’s because of that

It's not because of the HIV meds. Most obvious candidate is thrush, a common fungal overgrowth (Candida albicans) regardless of HIV status, if that's what it is it's not a major issue but do get it treated before it becomes a serious concern.

Anyhow, whatever it might be nobody here can diagnose it, so see your local GP or Pharmacist and they can look at your mouth, confirm what the issue is and treat it.
« Last Edit: January 20, 2024, 02:37:38 pm by Jim Allen »
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Offline Hope4cure38

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Re: HIV + since December 12
« Reply #25 on: January 20, 2024, 03:24:26 pm »
Thank you Jim, I’m already waiting in the waiting room to see a doctor

Offline Dogman

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Re: HIV + since December 12
« Reply #26 on: January 20, 2024, 06:26:59 pm »


           ojo.             Hi there… you are right there!…you are right dogman, it’s just a matter a time to learn how to live with HIV, the meantime, we all are allowed to cry, scream, do whatever it takes to get rid of guilt, or whatever we are feeling but, at the end of the day we had to recognize that we had to turn the page, and as you said, there are people in worse situation than us… wishing you all the best, because there is life after HIV diagnosis that is my mantra…hugs

Thanks Tony, I have read all your posts and advise.  hugs and good thoughts to you as well.

Offline Dogman

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Re: HIV + since December 12
« Reply #27 on: January 20, 2024, 06:35:41 pm »

Thank you for your msg it really helps, I feel a little better everyday but I’m
Still in a weird place accepting myself.


Did you experience your toungh getting white while taking viktarby? I just woke up with a white toungh, I’m also fighting a cold so maybe it’s because of that

I had an on and off whiteish tongue for a couple of years before diagnosis, per latter replies from Jim it's not the medication. I still have it to a slight degree, it was never a major thrush condition, but wasn't normal. 

Look, I'm still in a weird place, I'll be doing something innocuous and boom, there it is. I counter it by thinking "do you feel ok"? yes, "do you look ok"? yes - think about it - someone may have herpes virus in their system, or epstein barr or virus that causes shingles. But 99.9% of the time with management they present little or no issues - this is no different. It's a virus and it's under control. Each time I take my tablet in the morning I say in my head "take that you < every expletive I can think of > virus " ( I'm not preaching to you, I'm convincing myself as I write these words to you ha ha ). You will be fine. I also thank scientists regularly. :-)

Offline Ynvme

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Re: HIV + since December 12
« Reply #28 on: January 28, 2024, 02:56:23 pm »
Hello Tonny,

% CD 8 Pos. Lymph is 43.5  H    ref range 12.0-35.5 (%)
CD4/CD8 Ratio 0.72 ref rang 0.92-3.72

These 2 values were marked in red but the doctor didn’t really go over it with me.

My CD4 was 406 when I tested + in December 12

Did they tell you what your VL was? Im not sure how to read the results .

Offline Hope4cure38

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Re: HIV + since December 12
« Reply #29 on: January 31, 2024, 01:09:17 am »
Hello

My VL went down from 64k to 30 from 12/12/23 to 1/22/24 (6  weeks) and my CD4 went from 406 to 836.

I’m taking biktarvy (1 pm sharp everyday)

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Re: HIV + since December 12
« Reply #30 on: January 31, 2024, 05:13:08 am »
Hello

My VL went down from 64k to 30 from 12/12/23 to 1/22/24 (6  weeks) and my CD4 went from 406 to 836.

I’m taking biktarvy (1 pm sharp everyday)

Wow what stellar results! I’m happy for you! I hope those numbers continue to climb!
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Offline Tonny2

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Re: HIV + since December 12
« Reply #31 on: January 31, 2024, 07:13:56 pm »



         Ojo.         Way to go, my friend!!… Your story will give newly diagnosed people hope, and some peace of mind… keep up the good work. You know the formula….hugs and it is OK to stay away from the forums as you wish. Go back and live your normal life..
..

Offline Hope4cure38

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Re: HIV + since December 12
« Reply #32 on: February 16, 2024, 02:29:23 pm »
Well my liver panel is getting a little complicated my ALT just came back at 99 points normal range 0-44 and my AST 50 normal range 0-40

I’m only taking Biktarvy so I guess my liver is not liking it … anyone had this problem?

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Re: HIV + since December 12
« Reply #33 on: February 16, 2024, 02:41:07 pm »
Well my liver panel is getting a little complicated my ALT just came back at 99 points normal range 0-44 and my AST 50 normal range 0-40

I’m only taking Biktarvy so I guess my liver is not liking it … anyone had this problem?

So what did your doctor say? Was it drink plenty water, cut alcohol and retest in a few weeks?
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Offline Jim Allen

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Re: HIV + since December 12
« Reply #34 on: February 16, 2024, 02:43:06 pm »
How are you otherwise feeling/doing?
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Offline Hope4cure38

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Re: HIV + since December 12
« Reply #35 on: February 16, 2024, 03:17:27 pm »
So what did your doctor say? Was it drink plenty water, cut alcohol and retest in a few weeks?

Unfortunately I haven’t see the doctor, I sent him an email but he didn’t answer yet, I feel fine but I’m very concern about this issue

Offline Tonny2

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Re: HIV + since December 12
« Reply #36 on: February 16, 2024, 05:15:59 pm »



          ojo.            Hello there!… I guess your body Hasn’t gotten used to the tree medications you are putting into it. Let’s see what your doctor says. Hopefully he will not be something to be concerned about otherwise Doctor might need to switch your medication. But I think that you had to be a little bit more time for your body. Specially your liver to stabilize again…. please keep us posted because we learn from your experience….hugs


Ps. sorry for my typos.



Offline Jim Allen

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Re: HIV + since December 12
« Reply #37 on: February 17, 2024, 04:12:43 am »
Unfortunately I haven’t see the doctor, I sent him an email but he didn’t answer yet, I feel fine but I’m very concern about this issue

Try not to panic, if it was panic time they would have contacted you already. It's only one snapshot moment lab result, results go up and down for all kinds of reasons, not to mention you have only just started treatment and that can cause some labs to be off before your body adjusts and settles down, so talk to them when they get back to you.

In the meantime try to relax & rest.
« Last Edit: February 17, 2024, 04:15:28 am by Jim Allen »
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Offline Hope4cure38

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Re: HIV + since December 12
« Reply #38 on: March 04, 2024, 11:53:57 pm »
All my labs came back good, but my CD4 count went down from the 800s to the high 600s. However, the doctor told me to expect this as my CD4 count had increased rapidly from 400 to 800 in a short period of time.

She assured me it should go back to 800 or higher.

I am still experiencing dry mouth and a white tongue, so I have an appointment with my doctor tomorrow to determine what is going on. I suspect it might be a yeast infection, but I am not a doctor.

On a positive note, my doctor believes we are nearing a breakthrough in finding a cure for HIV. She believes we could have one within the next 5 to 10 years. I know some have been waiting for over 40 years and may be skeptical, but I remain optimistic about the possibility of a cure.

Offline daveR

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Re: HIV + since December 12
« Reply #39 on: March 05, 2024, 02:14:31 am »
All my labs came back good, but my CD4 count went down from the 800s to the high 600s. However, the doctor told me to expect this as my CD4 count had increased rapidly from 400 to 800 in a short period of time.

She assured me it should go back to 800 or higher.

I am still experiencing dry mouth and a white tongue, so I have an appointment with my doctor tomorrow to determine what is going on. I suspect it might be a yeast infection, but I am not a doctor.

On a positive note, my doctor believes we are nearing a breakthrough in finding a cure for HIV. She believes we could have one within the next 5 to 10 years. I know some have been waiting for over 40 years and may be skeptical, but I remain optimistic about the possibility of a cure.

As long as your CD4 count remains in range everything is good. The normal range is very large, something like anywhere between 470 - 1450. Your are fine.
I have seen mine jump from 330 on diagnosis to 860 and have since fluctuated between 600 and 1000.

Offline Jim Allen

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Re: HIV + since December 12
« Reply #40 on: March 05, 2024, 03:44:41 am »
my CD4 count went down from the 800s to the high 600s.

I'm with Dave on this.

Your counts can go up or down by 100 points a day and it is not a measurement of overall health. Mine also jump 300 points up and down during visits, which means absolutely nothing. I joke with my doctor that I sneezed and left them in the car.

Once the VL is suppressed and you have a count above the danger zone CD4 counts are rather irrelevant. This is so much so that some clinics and healthcare providers don't even run them anymore during routine check-ups.

How is your viral load? and more importantly, how are you otherwise feeling/doing?
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Offline Jim Allen

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Re: HIV + since December 12
« Reply #41 on: March 05, 2024, 03:47:16 am »
Well my liver panel is getting a little complicated my ALT just came back at 99 points normal range 0-44 and my AST 50 normal range 0-40

Did you manage to follow-up on this with your doctor?
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Offline Hope4cure38

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Re: HIV + since December 12
« Reply #42 on: July 05, 2024, 12:38:17 am »
Yeah, 2004, it was not that long ago.

AIDS deaths in 2004 Total 3.1 million (2.8–3.5 million)
Adults 2.6 million (2.3–2.9 million)
Children under 15 years 510 000 (460 000–600 000)

But thankfully today AIDS-related deaths have been reduced by 69% since the peak in 2004 and 71% of people living with HIV have access to treatment.

2004 - AIDS epidemic update Dec 2004
https://data.unaids.org/pub/report/2004/2004_epiupdate_en.pdf

2023 - https://forums.poz.com/index.php?topic=77569.msg

Some newer studies even indicate a slightly longer life expectancy than HIV-negative peers for people newly diagnosed who start treatment early.

It's not an individual forecast, you could be hit by a bus tomorrow and die but HIV isn't going to cause an early death for someone newly diagnosed today with good numbers and treatment access.

You're welcome.

Hello

Could you please share the studies that show hiv poz people can have a longer life expectancy? I was diagnose back in December and I still struggle woth the idea I won’t be around for much longer…


Offline Hope4cure38

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Re: HIV + since December 12
« Reply #43 on: July 05, 2024, 12:46:30 am »
So, to sum it up, I have been doing very well on Biktarvy, but due to my busy lifestyle, I decided to switch to Cabenuva to prevent forgetting to take the pill.

I believe Cabenuva is better for my liver because when taking pills, the medication goes through the liver twice (through the digestive system and bloodstream). Additionally, I feel less bloated.

My doctor told me that Cabenuva will soon be approved to be administered every 4 months so that will be amazing

Offline Jim Allen

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Re: HIV + since December 12
« Reply #44 on: July 05, 2024, 08:38:09 am »
Okay, ill give some references, but I don't want to overload you and these studies will not fix the issue or your underlying concerns.

These studies are also a tad pointless as Life expectancy studies are not individual forecasts, its group data and a look towards the past. You don't live in the past and don't have the same issues, meds (lack of meds) or challenges as others within that group today may have or did back then.

You are still digesting the diagnosis and that's pretty typical, and so is this question, anyhow, I'll give you the references below with some context & experince but I urge you not to read them and instead to talk to your healthcare provider, seek peer support & therapy and prehaps join some of our monthly calls.

Hugs.


Hello

Could you please share the studies that show hiv poz people can have a longer life expectancy? I was diagnose back in December and I still struggle woth the idea I won’t be around for much longer…

We members here have lived with HIV longer than you have been alive already.

Thankfully, you are 33 years old, healthy and diagnosed with a low VL count and good CD4s in the "Treat all" era with access to modern treatment. Even if you had been diagnosed in the 80s/90s with these results you would not be dead soon.

In 2010 the big discussions were all about lagging 13 years behind out HIV negative peers and at the time I said in those studies when taking pre-existing issues etc into account they could only find a 5-year difference, and the key was they used data from 1996-97. I told people newly diagnosed back then to ignore it as they didn't live with HIV in the 80s/90s waiting to start shitty treatment.

Then 2016/7 there was studies started to pop-up indicating a change, For example one that compared people from 2000 to 2003 starting ART to people starting in 2008 and found a real difference already because just as we said things were better. Better treatments, health information, understanding of HIV management, etc.

https://www.poz.com/article/modern-progress-hiv-treatment-care-likely-adds-decade-life
"those who started during 2008 to 2010 had a 29 percent lower rate of death from all causes during their first year on treatment. Looking just at non-AIDS-related death rates, the researchers found that compared with those who started ARVs during 2000 to 2003, those who started during 2008 to 2010 had a 52 percent lower death rate during their first year on treatment and a 71 percent lower death rate during their second and third years on treatment."




2012:

Life expectancy in older people with HIV could exceed the average - Based on:

May M et al. Life expectancy of HIV-1-positive individuals approaches normal, conditional on response to antiretroviral therapy: UK collaborative HIV cohort study. Eleventh International Congress on Drug Therapy in HIV Infection, Glasgow, abstract O133, 2012.

Sabin C Review of life expectancy in people with HIV in settings with optimal ART access: what we know and what we don’t. Eleventh International Congress on Drug Therapy in HIV Infection, Glasgow, abstract O131, 2012.

(I have one more to add, an unrelated projection that also found a longer life expectancy from 2015)



Now Aidsmap.com is shutting down soon. However, if you have read this far then read this before it before its gone:

2023
https://www.aidsmap.com/about-hiv/life-expectancy-people-living-hiv

2024
Easy-to-read and illustrated information on life expectancy for people living with HIV.

If you are diagnosed in good time, have access to care and treatment, and are taking your medicines, you can expect to live as long as someone who does not have HIV.
https://www.aidsmap.com/about-hiv/basics/life-expectancy
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Offline Jim Allen

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Re: HIV + since December 12
« Reply #45 on: July 05, 2024, 08:40:43 am »
Life expectancy was a topic at this year's conference as well, although, having said that it feels like a topic that keeps coming up on conferences with the same answers.
https://forums.poz.com/index.php?topic=77637.0
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Offline Jim Allen

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Re: HIV + since December 12
« Reply #46 on: July 05, 2024, 08:47:30 am »
Oh and please forgive the spelling/grammar today. I'm sure there are plenty as I am typing this out on my phone whilst out walking and I left my reading glasses behind so I can't see exactly what it's doing.
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Offline leatherman

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Re: HIV + since December 12
« Reply #47 on: July 05, 2024, 09:33:56 am »
I still struggle woth the idea I won’t be around for much longer…
my husband, myself, and literally hundreds of other PLHIV whom I have met at dozens of HIV conferences would like to tell you not to worry. :)

We've all been living with HIV for 30-40yrs, starting in the years when there weren't any medications. Most of us were at some point in those early years even hospitalized with AIDS and very near death. Now we're all taking some sort of newer HIV medication with no side effects. TBH most of us, even though we're in our 60s and early 70s, are still quite active and healthy.

Quote
I regretfully inform you that I have recently been diagnosed with HIV. My viral load was 64,000 and my CD4 count is 406.

I am 38 years old with no medical conditions apart from having contracted hepatitis A when I was 14.
I know this is just my personal experience compared to yours, but... :)

At 38 I had been living with HIV for 14 yrs, when meds were non-existent or were the earliest ones, and almost died of AIDS. Before that I had had no medical conditions except a bout of HepA when I was 23. When I was in the hospital I have a viral load in the millions, and my cd4 was 5. Needless to say, I didn't die and now 25 years later I'm 62 and couldn't be much healthy than I am right now. ;)

Personally, thanks to my grandmother's genetics (never forget, when your HIV is treated, the most likely thing that limits your longevity are the genetics your parents passed to you) and my HIV meds, I'm planning on living to 104 like she did. ;)
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Offline Tonny2

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Re: HIV + since December 12
« Reply #48 on: July 05, 2024, 05:28:52 pm »



          ojo.           Hello there!…I know how difficult is to think about the future after getting and hiv dx, it takes time to digest and learn how to live with HIV. There are so many LTS members on here that after 30 + years we are still here even when there were no as effective neds as there are today and we used to take different meds at once and yet, we are still here let alone nowadays that the meds are not just miracle meds but most of newly diagnosted people take jyst one pill a day, isn’t that amazing?. Nobody knows what the future will look like for all of us, with or without hiv, so let’s take about what is in our control, the present, live every day as it was going to be your last day, before Jim’s bus runs you over, lol, and don’t worry about it’s our control, our future…I posted once that  eventhough I was living with “full blown AIDS”, some of you might remember that term, I decided to get a mortgage thinking if I were to die then, the bank would tale my house back, 26 years later, finally the house is nine, paid off!!, what I’m trying to say is, keep making a kans for the future, nobody knows what the future will bring us…humble opinion



Forgive my typos and I hope you understand my English. It’s my second language.
And I’m legally blind

Offline leatherman

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Re: HIV + since December 12
« Reply #49 on: July 05, 2024, 07:00:55 pm »
live every day as it was going to be your last day, before Jim’s bus runs you over
ok. I laughed too much about that :D :D
leatherman (aka Michael)

We were standing all alone
You were leaning in to speak to me
Acting like a mover shaker
Dancing to Madonna then you kissed me
And I think about it all the time
- Darren Hayes, "Chained to You"

 


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