Welcome, Guest. Please login or register.
March 28, 2024, 06:41:30 pm

Login with username, password and session length


Members
Stats
  • Total Posts: 772946
  • Total Topics: 66310
  • Online Today: 441
  • Online Ever: 5484
  • (June 18, 2021, 11:15:29 pm)
Users Online
Users: 2
Guests: 349
Total: 351

Welcome


Welcome to the POZ Community Forums, a round-the-clock discussion area for people with HIV/AIDS, their friends/family/caregivers, and others concerned about HIV/AIDS.  Click on the links below to browse our various forums; scroll down for a glance at the most recent posts; or join in the conversation yourself by registering on the left side of this page.

Privacy Warning:  Please realize that these forums are open to all, and are fully searchable via Google and other search engines. If you are HIV positive and disclose this in our forums, then it is almost the same thing as telling the whole world (or at least the World Wide Web). If this concerns you, then do not use a username or avatar that are self-identifying in any way. We do not allow the deletion of anything you post in these forums, so think before you post.

  • The information shared in these forums, by moderators and members, is designed to complement, not replace, the relationship between an individual and his/her own physician.

  • All members of these forums are, by default, not considered to be licensed medical providers. If otherwise, users must clearly define themselves as such.

  • Forums members must behave at all times with respect and honesty. Posting guidelines, including time-out and banning policies, have been established by the moderators of these forums. Click here for “Do I Have HIV?” posting guidelines. Click here for posting guidelines pertaining to all other POZ community forums.

  • We ask all forums members to provide references for health/medical/scientific information they provide, when it is not a personal experience being discussed. Please provide hyperlinks with full URLs or full citations of published works not available via the Internet. Additionally, all forums members must post information which are true and correct to their knowledge.

  • Product advertisement—including links; banners; editorial content; and clinical trial, study or survey participation—is strictly prohibited by forums members unless permission has been secured from POZ.

To change forums navigation language settings, click here (members only), Register now

Para cambiar sus preferencias de los foros en español, haz clic aquí (sólo miembros), Regístrate ahora

Finished Reading This? You can collapse this or any other box on this page by clicking the symbol in each box.

Author Topic: 48 million viral load during acute hiv with fever and moderate flu like illness  (Read 81568 times)

0 Members and 1 Guest are viewing this topic.

Offline gpapadop91

  • Member
  • Posts: 206
“The CAPELLA results are exciting as they demonstrate that an undetectable viral load is achievable in a patient population that has typically had challenges with viral suppression over the course of their journey living with HIV,”

https://www.fiercebiotech.com/biotech/ias-en-route-to-fda-decision-gilead-s-long-acting-drug-keeps-hiv-down-patients-at-end

So by this I understand well???
Almost all or all , will we grow resistance to some or more of art classes in our hiv journey , generally???

So maybe we will ran out of choices I 10-20 years??

Jim am amI crazy or rational?
Because with 48 millions I think now I will fail to suppress my high viral load so I will grow resistance to integrase inhibitors which seem to be very effective for naive or/and heavily experienced patients....
.I'm so scared

Ouffff

Offline gpapadop91

  • Member
  • Posts: 206
When first-line therapy fails, second-line therapy may be complicated by drug resistance and side effects.

https://www.nejm.org/do/10.1056/NEJMdo006101/full/

Should or shouldn't I be so worry again now with 49 millions of copies VL per ml???

Please 🙏 tell me if this will not happen to me...
Maybe tomorrow I will know my VL @t 4weeks after starting treatment..

Hugs , brothers

Offline Jim Allen

  • Administrator
  • Member
  • Posts: 22,262
  • Threads: @jim16309
    • Social Media: Threads
Quote
Almost all or all , will we grow resistance to some or more of art classes in our hiv journey , generally???

No.

Quote
So maybe we will ran out of choices I 10-20 years??

Where does that thought come from?

No, I've already explained you could live for the next 50 years or be hit by a bus tomorrow and I've known some people who stay on a single combo for decades.

If treatment itself caused resistance and we ran out of options within 10-20 years of starting treatment most of us would be dead a long time ago including me.

Quote
Because with 48 millions I think now I will fail to suppress my high viral load so I will grow resistance to integrase inhibitors which seem to be very effective for naive or/and heavily experienced patients....

No, and your VL is not special. Plenty of us had higher and lower CD4's and we are still here. If i recall correctly the highest viral load ever recorded was over 1 billion and that person is doing fine with treatment as well.

I will find the link for that later tonight and update this post.

What you should so is to find out what your VL is after the 4 weeks of treatment so far since they did take your bloods to see if it's heading in the right direction. If within 6 months this treatment does not suppress the virus you could look into switching and that is not a scary thing. Most people switch a few times to find a combo that works for them with minimal or no noticeable side effects.

https://www.europeanpharmaceuticalreview.com/article/143332/the-current-and-future-landscape-of-hiv-treatments-and-vaccines/

Current HIV therapies
“The main focus of HIV treatment to date has been on antiretroviral therapy,” said Forkin. She explained that antiretroviral therapy does not cure HIV, but instead suppresses the virus and slows down its progression in the body, thereby preventing opportunistic infections and AIDS-related deaths

So this "slow down" means it's (ART) only makes the progression to AIDS slower, or can we really stop progression if we can suppress the virus to undetectable?

You are misreading this. You already have AIDS from my point of view, no way you are acute infection (Don't care what you claim).

What matters is the meds will suppress the virus and your immune system will "heal" and recover a great deal. As explained you could live for many years long a and healthy life. You are newly diagnosed in 2021, not in the 1980s. Even compared to the late '90s or 2000's so much has changed.

Quote
I understand Jim who in my eyes seems a bit more stric with me (🤗🤗🤗 joking) but he wants to be realist.

LOL  ;D
« Last Edit: July 22, 2021, 06:31:50 pm by Jim Allen »
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 Jim Allen

  • Administrator
  • Member
  • Posts: 22,262
  • Threads: @jim16309
    • Social Media: Threads
Quote
If i recall correctly the highest viral load ever recorded was over 1 billion and that person is doing fine with treatment as well.

I will find the link for that later tonight and update this post.

Yup, over a billion viral load recorded and published in 2015.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4680573/

Quote
The patient had a good response to therapy. After 1 month, HIV viral load fell to 7420 copies/mm3 and CD4 count was 38×106 cells/µL. At 6 months, HIV viral load was undetectable (<40 copies per mm3) and CD4 count 287×106 cells/µL, and raltegravir was stopped. After a period of outpatient neurorehabilitation, the patient's memory and cognition significantly improved and currently, 1 year on from her diagnosis, she lives at home alone, independent with activities of daily living.
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 gpapadop91

  • Member
  • Posts: 206
Thank you Jim.

Please explain me this...just for informational purposes and make me understand better..

By this :
"You are misreading this. You already have AIDS from my point of view, no way you are acute infection (Don't care what you claim"

Are you believing that I have already AIDS because of my numbers VL49 cd4s-167 on diagnosis or do you believe I had it longer period but didn't test before?

Because : February I was negative..3rd elisa
I had sex with my wife last time before I was infected.before 28 of April.
And with my polish girlfriend .
Both girlfriend and wife are now negative.
The only sex I had was with these two women who are now negative and this pornstar trans woman in April...28of April.
Had illness , an acute illness with fever, sore throat, like flu for 10days after exactly 3 weeks.
At that time I was negative in hiv antibodies by both 3rd and duo tests.
4th gen duo test was reactive to antigen only.

My hive specialist doctor told me after asked me how many WBC I had generally in my life.

We supposed after questions that I might had 500-600 cd4 before infection , so it's totally normal a very deep dive at 1/3 count during acute phase as well as millions of VUral load.

He told me I have no aids. It's just the acute phase because with Elisa 3rd gen I was negative.
And aids and acute are similar to numbers.

So if you tell me it was aids because of numbers , I understand you but I am a bit more scared.

If you believe it was/is aids because maybe I have it for years to have these numbers and counts...I'm telling you for sure it's not the case...

Thank you my friend
For everything , I appreciate

Offline Jim Allen

  • Administrator
  • Member
  • Posts: 22,262
  • Threads: @jim16309
    • Social Media: Threads
Look, I've already told you that you don't want me to start poking holes in your story about your infection as I will and it will not end well. What you just posted does not help you. So don't go there.

Anyhow, moving on, your numbers are below 200 and is an aids diagnosis (depends on who's standard you use as explained).

What matters is you have started treatment and the meds will suppress the virus and your immune system will "heal" and recover a great deal. So try to relax, give the meds time to suppress the virus and see how things trend over the next 6 months.  ;)
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 leatherman

  • Global Moderator
  • Member
  • Posts: 8,593
  • Google and HIV meds are Your Friends
I had other stuff I was writing up but I decided to erase it all and just repost Jim:

What matters is you have started treatment and the meds will suppress the virus and your immune system will "heal" and recover a great deal. So try to relax, give the meds time to suppress the virus and see how things trend over the next 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 gpapadop91

  • Member
  • Posts: 206
Look, I've already told you that you don't want me to start poking holes in your story about your infection as I will and it will not end well. What you just posted does not help you. So don't go there.
I really don't have problem to talk about this. I trust everyone here. You make me feel better. I feel all you as family. I don't have reason to hide nothing. I'm clear and I can tell everything true.
Just ask me..
And please , like talking to my brother, why do you think IT WILL NOT END WELL , OR , WHAT I JUST POSTED DOESN'T HELO ME?
I'm really curious.

Quote
Anyhow, moving on, your numbers are below 200 and is an aids diagnosis (depends on who's standard you use as explained).
Let me please again ask more clearly my question, because I really don't understand a lot because I'm new in this field.
Regardless the previous question of mine to you, and your related answer, my clear question is this ..
Because I know the truth , and for me is exactly what I tell you, I would like to know what is the reason which makes you tell me is AIDS?
Do numbers alone (167cd4 & 49millions viral load) determine the stage of illness?
Because if yes , I am totally confused , because I talked with my specialist believing the same, but he told me , in your case you are lucky to find it during acute phase , that's why your numbers are like that, and it will never progress to AIDS because you started treatment immediately after acute illness.

If you believe is aids because you think I had it for years , Incan understand you!!

So, do you think I have it already for a long time , and this is what makes a definition of AIDS alongside my numbers ?
oR
Bad numbers , anyways, always define what stage is someone in ?

So I mean, can some people go immediately from infection and acute phase to progressed aids??? skipping latent phase???

Quote
What matters is you have started treatment and the meds will suppress the virus and your immune system will "heal" and recover a great deal. So try to relax, give the meds time to suppress the virus and see how things trend over the next 6 months.  ;)
I agree with you. This matters most
However my hiv specialist doctor told me that for my baseline viral load maybe I need a bit more time to suppress bit or we did fail in our purpose...

Thanks both Jim and Leatherman.
Have a good night my friends

Offline Jim Allen

  • Administrator
  • Member
  • Posts: 22,262
  • Threads: @jim16309
    • Social Media: Threads
Quote
Generally, there are 4 stages of HIV infection, but it's a tad misleading as you can go skip stages going to stage 4 sooner.

Advanced HIV disease (AIDS) when being diagnosed most commonly (I think) would be defined as a CD4 cell count below 200 cells/μl or the presence of an AIDS-defining illness regardless of CD4 count.

In the USA, the CDC's definitions and stages are slightly different:

People receive an AIDS diagnosis when their CD4 cell count drops below 200 cells/mm, or if they develop certain opportunistic infections.
https://www.cdc.gov/hiv/basics/whatishiv.html

Just to add, don't focus too much on definitions etc., It's relatively pointless, so instead, just see your first results as a starting point and now you are on meds your follow-up appointments will show the trend. The journey and trend in your labs over the upcoming months/year of starting to suppress the virus are much more important.

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 Jim Allen

  • Administrator
  • Member
  • Posts: 22,262
  • Threads: @jim16309
    • Social Media: Threads
Quote
I agree with you. This matters most
However my hiv specialist doctor told me that for my baseline viral load maybe I need a bit more time to suppress bit or we did fail in our purpose...

I'm not sure what you mean by fail or what is meant by more time.

Anyhow, you should see at least a 90% drop within 6 months of the baseline viral load, if not you might need to switch treatment. I don't see why you would take longer than that expected time and most people would see the baseline start to drop within weeks already but it's not a race.

Did you find out your latest viral load?
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 gpapadop91

  • Member
  • Posts: 206
Good morning Jim ☀️☀️☀️☀️
Thanks for all this.

Just he told me , he didn't see again 49 millions. He saw 15-20 millions , so it may take a bit longer to suppress it.

Jim I appreciate all , thank you , and thank you all here for supporting.

I am just afraid , if I skipped stages and went directly to stage4 AIDS , I'm afraid I will have sooner bad illnesses and I will die much sooner.

I have this small yeast infection now... And I'm so scared that all my life I will be having problems..

Jim, should I expect my kidney ( real 90% of one kidney and 10% of the second hurt kidney) will be able to survive these years that you tell me, because of TAF?
I mean TAF seems to be safer.
But anyways in conjunction with emtricitabine they are concentrated to nephrons and in the long run it may slow down...

Anyways.
Thanks.
I'm sorry for asking all the time... I just feel closer to people and not alone.

Thanks.

Offline Jim Allen

  • Administrator
  • Member
  • Posts: 22,262
  • Threads: @jim16309
    • Social Media: Threads
Quote
I'm afraid I will have sooner bad illnesses and I will die much sooner.

Quote
You could live for another 50 or 60 years, your 35 now. Depends on what happens in your life but don't smoke, eat healthily and exercise if you want to live healthier and perhaps longer, and considering you are living with HIV take your meds.

Quote
Like I said you could live for the next 50-60 years, you could also be run over by a bus tomorrow. HIV is not an automatic death sentence or short life span, treat it and look after yourself to live a healthier and longer life if you want.

Quote
Look, I've put plenty of easy to digest references and information in the "Just tested positive" welcome thread, I also added things about starting treatment early and life expectancy etc. It' might be useful to have a look https://forums.poz.com/index.php?topic=2276.0

However, don't get focused on these topics.

Quote
you don't have to start planning and preparing your wife & child for your death soon because of your HIV status, and there are plenty of members here with far worse results than your who are doing just fine today.


Quote
I have this small yeast infection now... And I'm so scared that all my life I will be having problems..

Quote
The low CD4 counts mean you are at an increased risk for certain OI's and cancer, however, once the viral load reduces and the body can "heal" the CD4 counts should also increase again with time. Once the VL is suppressed and it will be the CD4 count become somewhat less relevant. That said plenty of people still have low CD4 counts and are perfectly healthy.

As a group we are prone to certain conditions more frequently or sooner in life, that does not mean it will be an issue for you and you will see your doctor or clinic during check-ups to monitor things and treat any issue early.

Quote
Billions of people have health issues, thankfully, you can manage your HIV but it will take medication & time.  You will not have to be having OI's all the time. Meds will suppress the virus, your immune system will "heal" and things will be better. You might feel worse at first given as your immune system starts again and finds & fight things it had been ignoring or had been too weak to deal with but that stage will pass.

Quote
should I expect my kidney ( real 90% of one kidney and 10% of the second hurt kidney) will be able to survive these years that you tell me, because of TAF?
I mean TAF seems to be safer.
But anyways in conjunction with emtricitabine they are concentrated to nephrons and in the long run it may slow down...


Quote
The Descovy combination pill contains tenofovir alafenamide (TAF) and emtricitabine, it's considered kinder on the kidneys than its predecessor (TDF).

However, it's not a conclusion that kidney function will be an issue as a result of TDF or TAF for everyone taking the meds. That's simply not the case, although it can be, thankfully this is included in monitoring so they can switch or change your meds should there be any concerns.

https://www.poz.com/basics/hiv-basics/taf-versus-tdf-difference
https://www.aidsmap.com/about-hiv/chronic-kidney-disease-and-hiv
https://www.poz.com/article/descovy-prep-works-equally-may-safer-kidneys-bones
https://www.aidsmap.com/news/aug-2020/kidney-transplant-between-people-hiv-safe-says-us-study

Quote
HIV Treatment, as explained, is fine and you need it now. Give yourself time to adjust to treatment and keep monitoring things with your doctor. No need to wait with treatment and should your current treatment cause any problems there are other combinations and there will be better treatments in years to come.

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 Jim Allen

  • Administrator
  • Member
  • Posts: 22,262
  • Threads: @jim16309
    • Social Media: Threads
Good morning Jim ☀️☀️☀️☀️
Thanks for all this.


You're welcome.

Look try to stop stressing about stuff that has not happened. Your baseline is just a starting point, its not really relevant anymore as that's the past and you have started treatment now. Focus on taking your meds and looking after yourself.
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 gpapadop91

  • Member
  • Posts: 206
What the hell?
Every day is a bit worse.
It's like oral thrush , on cheek , between gums and cheek.
Today I saw additional spot like oval shape 1-2cms far from first.
It's pity because I woke up witvery good mood, and after I saw this I am totally sad, stressed and disappointed that I will live all life like this.

It's not painful but bit strange.
Can you help me?
I had called my hiv doctor at hospital two days ago.
He told me "you didn't see what is oral thrush, and now you take pills and you will not have thrush. It will solve itself"
I send doctor today to see his reaction.
Please help me....

Offline gpapadop91

  • Member
  • Posts: 206
It's not painful yet fearing and stressing...
Maybe it's expanding inside my organs and I have general candidiasis???
Is it candidiasis..???

Offline gpapadop91

  • Member
  • Posts: 206


I have this , but not in tongue... Yet..
And a bit smaller in surface.

Ouffff
I'm totally scared

Offline Jim Allen

  • Administrator
  • Member
  • Posts: 22,262
  • Threads: @jim16309
    • Social Media: Threads
Hiya,

No reason to be scared, I mean you did not treat it, not sure what you were expecting. So see your local doctor when you can so they can diagnose and treat it. 

Jim
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 gpapadop91

  • Member
  • Posts: 206
Ηi Jim.
No reason to scare?
More additional pills to kidneys..
And if I treat it now.
And if my cd4 rise.
Can I suppose to be healthy for long period (4-6-10months) without something more??
Is it usual?


Doctor , hiv specialist, replied me now.
Don't touch bit or do anything to this.
He will ask when is stomatologist in hospital so I can go and diagnose.

You know what is my problems??
I didn't have any issue without treatment and 48 millions hiv and 160 cd4

I have oral manifestation now with 280 cd4
And maybe with half viral load.

This makes me think I will not live for long ..

Ouf , Jim.. and others.
If I will come in October in Dublin, will go for beer??
I owe to you.
And please send me every since a while to learn about me.
I cannot talk to my friends.

You are my brothers.
🙏🙏

Offline Jim Allen

  • Administrator
  • Member
  • Posts: 22,262
  • Threads: @jim16309
    • Social Media: Threads
Hiya,

No reason to be scared. You were recently diagnosed and your immune system is currently weak, these things happen. Get it treated and move on.

It's not surprising to have some issues when you start treatment, the virus is not suppressed yet and your immune system is still weak but starting to fight things it had ignored as it was too weak before to do anything.

It's a phase, you will get through it and be fine.  Now stop stressing before you hurt yourself.

Quote
Can I suppose to be healthy for long period (4-6-10months) without something more??

You could be healthy for decades at a time, you could also fall down the stairs and break your legs tomorrow or pick up any number of infections just like your HIV negative peers.
« Last Edit: July 25, 2021, 07:34:37 am by Jim Allen »
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 gpapadop91

  • Member
  • Posts: 206
Thank you brother.
🤗🤗🤗🤗

Ouffff...
You relaxed me a bit..

Thanks.
How is your Sunday?

And didn't reply yet.
Can I meet in October??

Offline Jim Allen

  • Administrator
  • Member
  • Posts: 22,262
  • Threads: @jim16309
    • Social Media: Threads

Can I meet in October??

Sure, keep me posted on PM when you are in town.

Best, Jim
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 virgo313

  • Member
  • Posts: 358
Hello gpapadop,
Just like to say I have candidiasis during few weeks before I was diagnosed. If it is candidiasis it is easily treated. Was given a kind of sweet tasting “syrup” & within days it’s gone. Try not to worry. Whatever CD4 currently does now matter as treatment has started. Lots of members here started treatment with single digit CR4. Mine was single digit.
What I have learned is that Dr will check & treat all related issue & treat them if there is any related to low immune (if any). Take it easy & just follow up with your appointments.
RVD Nov 2015. VL --> Log 5.32 HAART on 23/11/15
TDF+FTC+EFV / Chemo KS - 25/11/15 - 20/01/16.
CD4 - 4 (3/11/15) / VL - 225,000

Offline gpapadop91

  • Member
  • Posts: 206
Good morning guys... Hi there...
Good morning virgo313
How are you all there??

Just to inform you.
Doctor called me now.

Blood test , done at 8 of July , a month (28 days to be accurate) after starting my treatment with Descovy and Isentress , showed now

UNDETECTABLE VIRAL LOAD

I LOVE YOU ALL

Offline virgo313

  • Member
  • Posts: 358
I am fine. TQ. Great result. Meds work fast & well.  :)
RVD Nov 2015. VL --> Log 5.32 HAART on 23/11/15
TDF+FTC+EFV / Chemo KS - 25/11/15 - 20/01/16.
CD4 - 4 (3/11/15) / VL - 225,000

Offline Tonny2

  • Member
  • Posts: 2,938



         ojo.             Hi OP, congratulations!!!, great result…your initial VL level, may have been an error, in any event, you are UD now and you can relax and go back to live your normal life, just take your meds and continue with your doctor’s appointments, you will be OK…again, congratulations!!…hugs.                           ojo

Offline gpapadop91

  • Member
  • Posts: 206
Friends
I am really sorry.

I had diagnosis from ultrasonic for kidneys.

My one kidney is a big bigger to cover my body's needs , the other one is almost lost...
Good kidney : 14,5 cm
Bad kidney : 9cm* 0.7-0.8 cm

How can I live with one kidney only and hiv meds for life...???

Do you know a person living with HIV and one kidney???

I think I'm going to die...

I am not well....

I think all the time that maybe I will start losing my other one kidney with time... meaning that I will start dialysis in some years.

Offline Jim Allen

  • Administrator
  • Member
  • Posts: 22,262
  • Threads: @jim16309
    • Social Media: Threads
Hiya,

As said plhiv can and have even donated a kidney meaning they only have one left themselves.

Jim
« Last Edit: July 27, 2021, 03:31:26 pm by Jim Allen »
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 leatherman

  • Global Moderator
  • Member
  • Posts: 8,593
  • Google and HIV meds are Your Friends
How can I live with one kidney only and hiv meds for life...???
I'm sorry to hear about the issue with your kidneys   :'(
 
but as far as living with HIV meds, don't necessarily assume HIV meds are damaging your kidneys. The data about side effects shows that most people do not have kidney issues with their meds. (for example, none of my personal friends who have lived with HIV meds for 20-30 yrs. have kidney issues. several have bone density issues but not kidneys). You will have to work with your doctor and the data from your blood work going forward to determine if the meds would be adversely affecting your kidney(s).
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 gpapadop91

  • Member
  • Posts: 206
Τhanks for your kind support..
I had issue with kidney from when I was born.
Always I had one strong kidney and one just helping a bit.
Now it was first time my doctor of ultrasonic gave a number about minimum width of kidney to 7mm.

Maybe I had the same before because they were writing when I had again ultrasonics , that right kidney is at some places thin, but not giving numbers.

I just ask if you know people living with HIV , with one kidney , with medications art and living more than 20-30yrs.

Final question.
My problem drug is tenofovir. Ok TAF seems to be much safer but don't know with time what will happen.
Maybe it's concentrated and start damaging nephrons or kidney..
Anyways.

I want to know something. I was to Positive Voice team today in Athens. They told me they(Moderna, Scripps etc...) preparing these kind of injections which is not treatment is just messenger to bodies to produce bnAbs ... So it's safer for kidneys...

Ok I know it will need 5-10 years to have this drug, vaccine and that (if all good) will need repetition Avery single a while , months or etc...

I want to ask.
Ok, safer because it's like vaccine.
But isn't it harder for body to produce all the time antibodies to fight all the time hiv?

Maybe safer for kidney but immune exhaustion.
Correct?

To sum up.
Jim I know . I am boring to ask all the time ...
But I was born with problem , and especially me , I should be careful more than everyone.

Now I have almost 1 kidney which. Works 90-95%...and one damaged working 5-10% max..
Should I expect to live enough with one almost kidney and HiV toxic art treatment???

Offline gpapadop91

  • Member
  • Posts: 206
I'm going to sleep. I work early morning.
See you.
Buy guys
Good night

Offline gpapadop91

  • Member
  • Posts: 206
My mom is 67.
She told me she could give me if I need kidney.
My wife too.
Should I have transplant now? Or when need?
Because if I need in 10 yes, my mom may be not here... God only knows...
Ouf I'm so stressed...
Kisses hugs
Goodnight

Offline Jim Allen

  • Administrator
  • Member
  • Posts: 22,262
  • Threads: @jim16309
    • Social Media: Threads
Quote
Should I have transplant now? Or when need?

You might never need one.
As said there are other PLHIV who have only one kidney and are fine.

Stop stressing! Look after the good kidney, take your HIV meds, see the doctor for a check-up every six months and live your life. ;)
« Last Edit: July 27, 2021, 04:20:15 pm by Jim Allen »
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

  • Member
  • Posts: 2,938
My mom is 67.
She told me she could give me if I need kidney.
My wife too.
Should I have transplant now? Or when need?
Because if I need in 10 yes, my mom may be not here... God only knows...
Ouf I'm so stressed...
Kisses hugs
Goodnight



            ojo.         Hello there!!!

I, like Jim, stop stressing about something you don’t need now, don’t waste time feeling worried and enjoy life. If you were to need a transplant, then, ask your wife or mom.

I think you mentioned you have a son, be stronger for both of you, don’t worry until you have something to worry about. Listen, I was diagnosed with aids in 1994, cd4=20, I kept working 10 noirs a day, six days a week, I even bought my house, I never thought about the future and, I’m still here, even being legally blind, writing to you, maybe with some mistakes but I haven’t giving up, I will keep sharing my story on these forums (English and Spanish) because I made a promise to TONNY, a member of the Spanish forum who died of lymphoma due to AIDS.

About your kidney and antiretrovirals, I’ve been taking meds, the most toxic of all and I haven’t had any juguete’s issues at all, I had páncreas issues with KALETRA, I stopped taking it, problems went away…well, I hope you focus in being UD, enjoy your family and keep living, it’s all I can add hoping to help you understand that life goes on, with hiv, kidney problems, being legally blind, we are still alive and think about those, like TONNY, didn’t have the same opportunity, to keep fighting and being alive…good luck and I hope, your next post is to celebrate the good there is in your life, treatment, family, etc, etc.

Offline gpapadop91

  • Member
  • Posts: 206
Good morning..
Thanks all for your support.

I will see...I'm a bit stressed.
Because I have some minor pains but without ultrasonic to show some small stones...so...

Offline Tonny2

  • Member
  • Posts: 2,938



            ojo.           Hi OP, well, I’m not a doctor but, if you think the reason for your pain is the small stones, drink lots of water so they do through with the urine stream, I think is all you can do about it. Talk to your doctor what can you take for pain, I think for your kidney‘a problems it’s best to take acetaminophen.

Picture this, when I made participate my family about my status, I had not other chance because I was dying of PCP, I decided to hide my pains and discomforts so my family would not be worried about me, because they feel worst than me if they would know I’m suffering and they couldn’t do anything for me, do you know what I’m trying to say?, English is my second language. Nowadays the only pain I have is neuropathic pain and pain in my blind eye, I’m thinking in removing the eye to stop the pain, and I don’t take meds for my neuropathic pain, I have learnt to live with it…I hope you get my point and enjoy your life, the sooner the better , you will feel better and maybe, you won’t even feel pain because your mind will be busy doing something good…best of  luck and please keep us posted at least until you learn to live with hiv, because are usually tell some of the members who reach  an UD level, to go back and live they normal life before hi which means, even visiting these forums…hugs

Ps well, once and a while we would like to know how you all are doing.                 

Offline gpapadop91

  • Member
  • Posts: 206
the thrush that I couldn't see deep down in my esophagus left scar tissue that can cause me issues when swallowing

Hello there..good evening..
How are you?

Still there my like thrush. It changed a bit icon..

But my question is..
How could you notice your esophagus thrush if you couldn't see down there?
I mean if we only have in esophagus , then how can we know if we don't have in mouth??

Mine, scares me a lot...


Also , last two three days I have some small pains or discomfort from my kidney(s)...
I'm so scared that meds art cause slowly problem to my kidney and nephrons of its, ...
Anyways I'm so scared

Offline Tonny2

  • Member
  • Posts: 2,938



              ojo.          Hi there, if you were to have more thrush inside, you would have problems swallowing, if it is getting better where you can see that means that it is getting better all over your throat…talk to you doctor about those pains and please relax, I think you need to take it easy…hugs

Offline leatherman

  • Global Moderator
  • Member
  • Posts: 8,593
  • Google and HIV meds are Your Friends
I mean if we only have in esophagus
that's not how it works. thrush starts in the mouth and when severe can spread down into your throat. You have to be really sick (very low cd4) and the thrush has to get really bad before it effects your esophagus.

You know, looking back, I feel I shouldn't have even mentioned all this stuff about thrush to you. I really only retold my story to impress on you the need to have a doctor check it out soon, so you could get a medication if needed. If I knew you were going to keep worrying so much about this, and in all the wrong ways, I would have not posted anything.

I know this time has been very scary for you but you would be best served if you tried to take the advice many of us have given you - quit worrying so much and imagining the worst.

You're already undetectable and have a cd4 that is at least 280. (I've lived nearly 20 yrs of my life with counts just like that and I am very healthy.) While it's easy for us to say "don't stress", and it's very hard to follow that kind of advice, you should really try to relax some. The meds are clearly working, and your immune system is getting back to strength.

Right now, you're in a recovery period (recovering good health after HIV has been damaging your immune system) and unfortunately, recovery always takes some time. Just breathe and take your HIV meds every day. Don't read anymore about any of your symptoms and let nature and your meds work for a while.

Spend some time doing something you've always wanted to do. Make sure to let those around you know how much you love and care for them. Enjoy being alive today - and worry about tomorrow later.
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 gpapadop91

  • Member
  • Posts: 206
Ηello guys , good evening..
Thanks for your time and interest.
I just think of it. I'm not totally fearful but this is something that with medicine will go away...

Believe it or not, I drank a lot of soda bicarbonate diluted in water and it's a bit better... You know soda is very good for neutralising pH and killing fungus etc...

Anyways.

Offline gpapadop91

  • Member
  • Posts: 206
Anyways my problem is different.
Kidney.

I had ultrasound. I see that right kidney is much smaller than the good one the left one.

But this good one, although I have normal blood tests on exams done in one month of starting art, now almost two months after initiation of art I have more and more kidney pains.
I know I have to lose some weight.
But this worries me a lot.
I sent message to my hiv specialist doctor from hospital.
If art creates problems to kidney , how can I understand???
Even if my tests are normal should I continue taking these pills? Or I need to change scheme???

Has Descovy been associated with kidney problems??

Offline gpapadop91

  • Member
  • Posts: 206
Please help...
I now took results from blood tests , being done 20 days after my WBC was 5600 and cd4 276. This was 9July.

A day before I had covid 1at dose vaccination
8 july

Today , took results of 27 July with
WBC 3800

What the fuck???

Elevated urea acid. = 8
A bit elevated creatinine = 0.97

Ouf ....what the heck?

Offline gpapadop91

  • Member
  • Posts: 206
I destroyed myself...
I cannot live like this...
Kidney , low counts , pills , waiting cancers....

Offline Grasshopper

  • Member
  • Posts: 737
Please help...
I now took results from blood tests , being done 20 days after my WBC was 5600 and cd4 276. This was 9July.

A day before I had covid 1at dose vaccination
8 july

Today , took results of 27 July with
WBC 3800

What the fuck???

Elevated urea acid. = 8
A bit elevated creatinine = 0.97

Ouf ....what the heck?

Take a deep breath, and count to ten.

Next get an English dictionary and look up the meaning of: "A bit elevated"

Next count to 30 and contemplate on what you read in the dictionary.

If you were realy dying, don't you think that your doctor would have called by now ?

One other question I have for you :

What are you doing ? Do you have a medical background ? ....don't think so ! There is shitloads of medical information available on the internet. Has the coin not dropped with you, that unless you have a medical background it's impossible for the lay to connect the dots ?

You are being treated by a doctor. He knows your medical background. He has all the immages of Xrays and Mri's and your lab results. Only he can connect all the dots AND prescribe the appropriate medication. If your current meds are causing unnecessary harm to any of your organs or health, he WILL act accordingly.

You need to reset yourself asap....get a referral to a psychologist or ask your doctor for help. Otherwise this hyper stressing will on the long run cause you more harm than hiv itself.

Take care and goodluck

Offline Jim Allen

  • Administrator
  • Member
  • Posts: 22,262
  • Threads: @jim16309
    • Social Media: Threads
I said it before, and I'll repeat it: you will hurt your health if you keep stressing like this.

Your labs are slightly off at the moment.  I'm not surprised, considering you had low counts, only just started treatment and to suppress the virus.

There is no need for doom and gloom over a snapshot lab result as they change and vary. Your doctor should be providing a clear context of what these results mean in a way that is easy to digest and monitor the trend with you and advise you as needed about any necessary changes in the future. Do make sure to let your doctor know about the pain, you have mentioned this a number of times and what you should be doing is letting your doctor know.

Try to relax and stop googling everything. I also agree with Grasshopper about letting your doctor know about what seems to be a constant state of anxiety so they can medically assess that, assist you or provide you with a referral.
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 gpapadop91

  • Member
  • Posts: 206
Thanks guys...you are right.
I have to stop googling.
But , after a month of art initiation I started to show good lab tests , I took hope , I went for holidays in a way that forgot a bit about illness...
So now I'm worrying if there was a hiv Rebound and that's why WBC again to 3800...
What the heck?
Anyways..
I started this period going to beach almost everyday, eating a lot of meat...so maybe this lifestyle which makes me tired , cause this drop in WBC. ??
I mean I forgot illness and started again going out all the time...sun (ok with sincere, protection etc) but...not staying home and resting..
Ouf what the .. is this bad virus.??

My friends I don't want to live with such a virus , it's like a monster inside me , eating me....
Ouffffffff

Offline daveR

  • Member
  • Posts: 290
You have mentioned your kidneys many times, I don't see your issue. Your creatinine levels are normal and better than mine. As others have said, stop stressing, you will only make yourself sick from worry. Take your meds, live your life.

Offline gpapadop91

  • Member
  • Posts: 206
Good morning guys... Yes, you have right.. it's not easy to not stress .. I feel some discomfort in my good kidney. If it fails I have to start dialysis , meaning 4-10 years more life...i.e 39-44 dead...
How shouldn't I worry...?
Easy to say hard to do, unfortunately.

Please my brothers...
Do you know?

After being undetectable within a month of art initiation, I felt well started doing many things again...
Maybe , is this the reason that WBC fell again???
I mean being tired and many things ...???
Talk to me please about your lifestyles..
Is too bad that I am doing almost three jobs??? From health perspective??

Secondly, does anyone know about any Descovy case that caused kidney injury?
Because all the time I am reading about the kidney project, you know , the artificial implantable kidney..
Should I hope I will get one??

Offline Matths

  • Member
  • Posts: 96
Good morning my friend, like many others I have read your communications with great interest. It looks like you are on a good path to recovery having excellent medications to effectively treat HIV. As everyone here said: take your medicine, don’t skip a dose and see your doctor for your appointments.

Let me add one advice: we are here a group with very diverse backgrounds and life situations. And in the midst of diversity we all share one common theme: being HIV positive and sharing with each other our experiences to help each other. That includes you now. We are here to help. The one advice: it appears to me that your fear of various illnesses goes beyond what is reasonable. You should seek help and sit down with a professional therapist to address those fears. It will support you, your family and friends and will allow you heal faster so that you can do what we all encourage you to do: live your life! Best Matt

Offline gpapadop91

  • Member
  • Posts: 206
Thank you all... really....

Something more my friends.
Generally, with medications, is it very bad or isn't good to run two three jobs and for everyone who asks help or coffee?
I mean friends need some help, they argue if I don't help. But this time I was needing to rest my body for example after beach...
Or working on too many things... isn't bad for not letting body to heal immune system??

Offline Tonny2

  • Member
  • Posts: 2,938



          ojo.          Hi again…listen my friend, I think that working 10 hours a day six days a week while living with AIDS (zero cd4), saved my life…I think, you need to keep yourself busy, it would help you to keep your immune system working and, at the same time, keeping your mind and sanity occupied and no thinking about hiv or kidneys that often. Your body will let you know if you need some rest…again, good luck and maybe you should consider to look for professional help to help you with your anxiety…hugs.       

 


Terms of Membership for these forums
 

© 2024 Smart + Strong. All Rights Reserved.   terms of use and your privacy
Smart + Strong® is a registered trademark of CDM Publishing, LLC.