Hi! I am Leon

[Leon82]

Hi guys! I am Leon, i am 42 years old and i was diagnosed on 13 of June 2024, so eight days ago...    I had no symptoms at all, i found out i was positive after going to doctor to ask for hpv vaccine preventively. He prescribed me HPV and he tested me for hiv as i told him i hadnt been tested for some years. Today i got my exams, my cd4 788 and my VL 18700. The rest of my exams was great. My best friend is hiv+ so all this was familiar to me, i knew it is not a death sentence anymore.... of course this does not mean i was not devastated. My doctor gave me Biktarvy, i ll take my first pill in a while...

All these days i was reading this forum and it really helped me stay calm. Thank you

[leatherman]

welcome! Sorry to hear that you tested positive but glad that you found out sooner than later. Your CD4 level is great. Your viral load should come down fairly quickly since you've started meds.

If you have any questions about living with HIV just let us know

[Tonny2]

                    ojo.           Hi Leon, I’m tiger, lol I live tigers… i’m sorry for your diagnosis, but you are right, nowadays having HIV is having a chronic condition all the comment getting an HIV diagnosis is difficult. You are not alone we are here for you, if you need information or someone to lean on, we are here for you… Medication as prescribed and now that you are positive you got to be more positive about life because trust me, there is life after an HIV diagnosis. I’m sorry for the little joke. Leon is lion in Spanish… welcome to the forum and as I said, you are not alone we are here for you. By the way, your numbers are great so you will be undetectable on your next bloodwork results….hugs


Ps. i’m sorry about my typos

[Jim Allen]

Hiya

Sorry to hear about the diagnosis but glad you have access to treatment. Take it easy, keep us posted on how you get on and feel free to ask any questions you might have. We're here to support you.

Best Jim

[kentfrat1783]

Sorry to hear and it can be hard to deal with even when you know it isn't a death sentence anymore.  Just know to let yourself deal with it that way you can. 

Your count sounds good and I'm jealous as who knows if my numbers will ever get their.  Just listen to your doctor and ask questions that you may have. 

I hope you have a great weekend and things improve. 

[Leon82]

Thank you all for your answers. It is weird but i feel a connection with all of you even if i do not know you personally. This is a really warm feeling. So, i took my first Biktarvy yesterday, i didn't notice anything weird. I read here in forum people's experience with this med, i just hope i do not gain weight.... generally, i ve always been in a healthy lifestyle. I am going on with my life like nothing bad happened, i keep going to the gym, i meet friends etc because i feel that if i let myself be depressed right now, it is going to last forever... and then it wont be easy for me to find the strenght to go back to my usual lifestyle. I am not into alcohol, cigarettes, weed etc but if i do these things right now, i think it wont help me at all... i just vape nicotine, my doc said i should quit vaping too but i do not feel ready to quit vaping right now. Generally, i try to be compassionate with myself these days.

PS. Sorry for my english 

[Tonny2]

     

           ojo.             Hi Leon!, I think your English is better than mine so no worries. I’m glad you feel connected to us and if you need someone to talk to privately, you can do it. I read somewhere that the medication you’re taking mostly women were they won who gained weight. I know some people, men, they having gained any weight at all. Just try to keep yourself busy doing what you used to do and just take your medication as prescribed. I like your attitude, no blame in anyone, and taking responsibility of your diagnosis… Please keep us posted , and again we are here for you… abrazos

[Tonny2]

               ojo.         @Leon, one more thing, do not start disclosing to anyone your hiv status until you are sure if you want to do it, in my case just my family knows.about my status even after almost 30 years since my dx I haven’t told  any of my friends, although I imagine that my closest friends knows but he has never said anything to me. It’s just a little advice… Hugs.

[Leon82]

Thank you for your advice, @Tonny2 . I disclosed to my best friend and my partner, they are both very supportive. I haven't disclosed to my family and i do not intend to. I just hope they do not find out by accident in the future...
I am on day 5 with Biktarvy, a little bit of diarrheia but ok. Everything is fine but there are some times i feel really stressed with what has happened. I did not take any pills in my life, not even simple painkillers for headache, so now it is difficult for me to compromise with the idea that i will have to take one pill every day for the rest of my life. Like i can not accept it. The idea of their toxicity makes me really stressed and sad.

[Jim Allen]

The odds are you will be taking more daily pills as you age. This is just the first managble health condition and treatment. Thankfully though, you have access to this modern once a day treatment that's not toxic and you also will be monitored.

You are newly diagnosed and it's a lot to digest, give yourself and your body time to adjust, and in a few months chances are you will not think about it anymore. Peer support helps and talking to a therapist can also do good.

[Tonny2]

           ojo.            Hi Leon, it’s ok you are feelings sad with the changes in your life, it takes time to learn the live with hiv but guess what!, you have access to free “vitamins “ and the best of all is that you are taking just one “vitamin” a day and a good one, because there are other people in other countries that they don’t have the same opportunity that you have. How about toxicity?, I think she said that you are vaping or chewing, tobacco, I’m not sure what would be more toxic you vaping or taking it your “vitamin “. I guess that’s why your doctor said to stop vaping. I have it taking medication for almost 30 years and I haven’t grown a third eye although it wouldn’t be a bad idea to have a third eye because I already lost one. Back in the day, medications were toxic, but either you took them or you would die, and we used to take a lot of different pills a day. I some matter fact, I take eight vitamins a day every day for the last 17 years of my life and just for a SIV because there’s disappointing your life that, because of age, you start taking medication for other conditions that arise because of age. I’m telling you all this for you to put in context how are you feeling now.… We are here for you, you are not alone and like Jim told you, you are a newly diagnosed person and it takes time to digest your new condition, but guess what!, There is life after an SIV  diagnosis just ask your best friend and he will tell you that I’m right. Question, has your partner been tested for HIV?, I hope so… Now, that you have posted three times you can talk to anyone via privately (PM) with whoever you want to talk to to help you out with your new normal. Hang in there that you will be OK because you already did the most difficult part, getting tested, now you know you have it now you treat it. Life goes on… hugs



Pa. sorry for my typos, English is my second language and I’m legally blind.

[leatherman]

hey Leon!

not that I'm bitching at you, but I've always hated the word "toxic" associated with HIV meds. Somewhere along the line HIV meds got this bad reputation. I'll blame it on how terrible, even if life saving, the first HIV meds were.

So the definition of "toxic" is poisonous or very harmful or unpleasant in a pervasive or insidious way. And I just can't see how that definition is appropriate. The meds aren't poisonous, even if there can be some negative side effects. It seems you're having side effects now some as your body adjusts to the meds destroying HIV. Unlike the old days, most negative effects are mild these days and settle down in a short amount of time. Of course, swallowing meds (and remembering to swallow those meds every day) is "unpleasant" but harmful, pervasive and insidious are not the proper definition either.

HIV meds come in several different categories doing specific things. Some meds stop HIV from attaching to a cd4 cell. Several stop it from the different changes it makes to the cd4 cell turning it into a mini-HIV factory. Others stop the newly made HIV from exiting the cell.  Through time, we've learned that the best way to kick HIV in the ass is to attack it through a combination of 3 different ways. In the past, it would take a handful of pills to attack HIV at enough points in the cell entry, HIV creation, and exit from the destroyed/used-up cd4 cell. Now a single pill with practically no side effects is the norm.

But back to "toxic". Technically none of the methods to attack HIV are toxic...unless you want to say that they're toxic to the HIV itself.  And I'm ok with that kind of "toxicity". Just don't let a mistaken impression about the meds color your experience with them. ARVs attack HIV and stop it from reproducing and that's just nothing to be worried or stressed about.

The odds are you will be taking more daily pills as you age.

interestingly enough, I take fewer daily pills than any my parents or grandparents took when they were my age (62).

[Grasshopper]

* it is difficult for me to compromise with the idea that i will have to take one pill every day for the rest of my life.
**Like i can not accept it. The idea of their toxicity makes me really stressed and sad.

Give it some time, you will get used to taking that small brown pill.

How about the deadliness of the virus .....I don't read that it is stressing you out ?? Have you not heard of or read about all those people who were not so lucky to have access to those pills....that millions have died because of lack of those, as you call them "toxic pills" ?

I have been taking those kind of pills for almost 32 years, and I have to die from pill poisoning.

[leatherman]

and I have to die from pill poisoning.

have/have 'yet' to die.

Just did the math and I started meds 32 years ago....and I haven't died from pill poisoning either. LOL

although I had some bad times with Norvir and Atripla and at times kinda thought I had been poisoned. Since that was 1992, did you start with AZT or something else?

[Grasshopper]

Yessss....I forgot the "YET"  .....almost having a heatstroke here on the island.

Indeed 1992  .... AZT       even though the AZT pills turned me inside out, I kept taking them diligently simply because the only other option was a sure death.

 

[Leon82]

Hi guys, thank you so much for your answers and your support. I didn't mean to insult anyone or to misinform about arvs. When i said ''toxic'' this is what i always thought about all pills, not arvs espescially. As iwrote i didn't even take simple painkillers in my life (i m scared of them too, lol). I promise i won't use this word from now on. Side effects is ok, not much but when you read that leaflet of instructions hat comes with Biktary, well... it is kind of scary! But this happens with all drugs, i know that.
These days i try not to remember to take my pill and i explain. i m taking my pill every night 11 o clock. It is really important for my psychology not to remember it, i do not want to have a look every five minutes on my watch until it is 11 o clock. I want to be cool since my mobile will remind me it is time to take my pill as it does and i always take it.
@Tonny2 yes, my partner tested negative.

[Jim Allen]

Regarding the mobile phone reminder, glad to hear you found a system that works for you.

I'll repeat that you should settle into treatment soon enough. Give yourself and your body time.  As for diarrhea if it's just setting into treatment it should diminish after a few days or weeks but if it doesn't or it is severe go back to your doctor, there are also other reasons PLHIV get diarrhea that they might need to check.

Are you taking anything else or supplements?

Anyhow, I wish you well and keep us posted.

[Leon82]

I m taking vitamin D cause i m insufficient, i told my doctor and he is ok with that. Diarrheia almost dissappeared, i m much better now.

[Jim Allen]

. Diarrheia almost dissappeared, i m much better now.

Glad to hear it's settling

[Leon82]

Hey guys,
i may have some silly questions and i apologise about that... but i 'd like to ask something. Are there PLWH for more than 30 or 40 years that never had any serious OIs? Or is it kind of inevitable?

[Grasshopper]

My husband is well over 25 years hiv positive. He started with meds day after diagnosis and he has never had any OI's

[Leon82]

@grasshopper so good to know, thank u for your answer. I love your nickname, btw 

[Jim Allen]

i may have some silly questions and i apologise about that.

You have nothing to apologize for. This is a support forum and we are here to support each other, you are not alone.

Are there PLWH for more than 30 or 40 years

40 years ago, well keep in mind that was 1984, Pre-HAART (Highly active antiretroviral therapy), it was also Pre-Anything, so no HIV treatment.

1987 - Still Pre-HAART, but AZT approved, monotherapy 
1996 - Highly active antiretroviral therapy (HAART) - The "wait era" Get AIDS or Lucky first. 
2004/5 - Globally HIV-related deaths peak, 2+ Million per year.  We have treatment but it's not widely accessible or given.
2005-2015 - ART access starts to increase, and HIV-related deaths start falling.
2015 - START - People who start (ART) immediately after HIV diagnosis, rather than waiting have a significantly lower risk of illness and death. The "treat-all ara"

But, yes, I know or have known a few people from the early 80s who never had serious issues. They are lucky ones and the rare elite controller who without access to treatment at that time to suppress HIV never developed AIDS-defining OIs and nowadays have access to treatment. 

Or is it kind of inevitable?

Without treatment, yes, HIV is 90%+ deadly and you would get OIs.

However, you were diagnosed with healthy numbers and started treatment early with modern meds in the "Treat all era" to prevent damage. You should not be expecting any AIDS-defining OIs and that group's average life expectancy is the same as their HIV-negative peers. *

* "When to HIV therapy" sticky: https://forums.poz.com/index.php?topic=68419.0

[leatherman]

My husband is well over 25 years hiv positive. He started with meds day after diagnosis and he has never had any OI's

my husband has been hiv+ for 35+ years with never an OI.

Or is it kind of inevitable?

Nope! The only people living with HIV who deal with OIs are people without HIV treatment.

Here's a quick comparison, Leon, to make some sense out of how things were and how they have changed.

1. My first partner was infected probably 2 years before me. Since there was no treatment in those days, he had serious OIs and eventually passed away.

2. Two years after his death I was admitted to the hospital with an OI. However, I had just started on the earliest meds and didn't die and recovered. I've never had an OI since.

2. My current partner/husband was probably infected 5 years after me. Because he was able to start with better meds, he's never had an OI at all.

This is 2024 and not the 90s like the stories about me and my partners. The only way to get an OI nowadays, 30ish years since the discovery of HIV and creation of medications, is to have unprotected sex, never get tested, never get treatment, and never visit a doctor with any earlier milder symptoms. (and that doesn't describe your situation at all )

[Leon82]

I am really shocked with 2005 era, i had not idea arvs were not widely accessible in 2005! I mean... 21st century! I just realised how scared my best friend shoud have been when he was diagnosed at the age of 19 in 1999. Thank you for all these information Jim, very englightening. Thank you too leatherman, both of you made me
feel better and most important made me face it in a more realistic way. So, it is really up to me and from now on my lifestyle choises will play a decisive role for having or not OI's.
Jim, i really needed someone to tell me that life expectancy can be the same as their HIV-negative peers. Most articles (my doctor too) say ''nearly'' the same and that ''nearly''  hurts....

[Jim Allen]

I am really shocked with 2005 era, i had not idea arvs were not widely accessible in 2005! I mean... 21st century! I just realised how scared my best friend shoud have been when he was diagnosed at the age of 19 in 1999.

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

Jim, i really needed someone to tell me that life expectancy can be the same as their HIV-negative peers.

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.

Thank you for all these information Jim, very englightening. Thank you too leatherman, both of you made me
feel better and most important made me face it in a more realistic way.

You're welcome.

[leatherman]

So, it is really up to me and from now on my lifestyle choises will play a decisive role for having or not OI's.

really, there's only one lifestyle choice to avoiding an OI - take the daily med. period.
Oh sure, eating right, exercise, limit alcohol and drugs, blah, blah blah. Well, maybe I shouldn't be that dismissive.  Treating your body properly is the best way to a longer life....although never forget that genetics plays a part in health/longevity too. Some health issues all you can do is blame your parents. LOL (Sorry Dad. I'm glad I got more of my genes through Mom and her side of family. Your family dies too early from heart failure.)

i really needed someone to tell me that life expectancy can be the same as their HIV-negative peers. Most articles (my doctor too) say ''nearly'' the same and that ''nearly''  hurts....

Ok. As one of the old men around here, can I say one old man thing? LOL

I graduated in 1980 from a small (religious, ugh) school in a class of 43 people. Forty-four years later, 6 of those people are deceased (14%), and not a single % of that was me! Actually if I had died either time I was hospitalized, I still wouldn't have been the first one, or even second one, who had passed away. (who knew living without HIV was so deadly? LOL)

Of course, thanks to my grandmother living to 104, I plan to outlast all my other classmates anyway. My husband (my 3rd long term partner, and the one who has lasted more than 10 years) and I often joke (some black humor) that I'll live long enough to have yet another husband after he's gone. LOL

TBH it's not just me. I could name you probably two dozen friends of mine who are all still alive 30+ years later, starting on the first meds, and living long enough to get the good meds we have today. Probably 3/4th of them are still working because they have always been healthy.

[Leon82]

Hi guys! May i ask about some numbers...

my cd4+/cd8+ ratio is 0.89
And as for cd4 percentage... there are two different numbers, i can not understand which is the one i should take into account... the one  says %lymphocytes 36,1
The other one says something in greek for which i can not find the translation... maybe something like genes (γονικού if someone is greek here lol) %41,7.
I can not really tell which is which. Which mumber is for cd4 and which is for cd8... Is one of them supposed to be higher in number?


Thank you all

[Jim Allen]

The shortest answer is all these counts are somewhat irrelevant, they are above any danger zone, you can't change them and all that matters is your VL is suppressed.

Odds are with such a small VL it's already suppressed or largely reduced and that will show on your next lab results. 

i guess the one that says %lymphocytes 36,1
The other one says something in greek for which i can not find the translation... (γονικού if someone is greek here lol) %41,7.

I don't know any Greek.

However, the average normal CD4 percentage for someone who is HIV-negative is about 40% with the range being about 25% to 65%.

So 36 or 41% would both be within the normal range, so the same results as your HIV-negative peers.

Moving forward there is no point looking at them as it's not a measurement of health, it doesn't tell you anything practical and the count & % will change each time.

my cd4+/cd8+ ratio is 0.89

 

This one is part of a far bigger topic...

In short, the normal range for the CD4:CD8 ratio is between 0.9 and 1.9.+-  meaning about 1 to 2 CD4 cells for every CD8 cell.

In untreated HIV the CD4:8 ratio drops over time. Once below 1, it is sometimes called an "inverted CD4/CD8 ratio"  meaning the immune balance is off (altered immune function) and immune activation (linked to the whole chronic inflammation).

You might see this number change over time as you have now started HIV treatment, but there is not much you can do about it as far as I'm aware so also no point stressing about it.

Is there something i should be worried about?

Yes, make sure you have retirement plans

If you want to remain healthy or healthy for longer it is the typical stuff but some of this does impact PLHIV more, so eat a balanced diet, sleep, exercise, drink less and quit bad habits like smoking.

I miss smoking...

https://www.poz.com/basics/hiv-basics/understanding-lab-work-blood-tests
https://i-base.info/ttfa/section-1/

[leatherman]

The shortest answer is all these counts are somewhat irrelevant

Bingo!

here's the catch Leon. The ONLY thing you can control is the Viral Load by taking daily medication to reduce it to at least under 200.

That's it. You can't control your cd4 or your cd8 counts. You can't control the other 368 types of CD cells either (looking up that number, I just found out that CD stands for ''Cluster of Differentiation''. Wow. 30 years of seeing these numbers and I never learned about that until now.)

When you're seriously ill with HIV, heading down into the AIDS range of <200, knowing how many cd4s etc you have can be viewed as a warning that you are vulnerable to Opportunistic Illnesses (OIs). That's really the most important thing a low CD4 result can demonstrate.

The biggest problem with "caring about your cd4 count" is that the CD4 results doesn't measure the strength of your cd4 cells. Some people with 100 cd4s are quite healthy; while some people with 700 cd4s can be sick. More doesn't mean stronger or better (because they can't measure that) - although the common wisdom of "the more, the better" is pretty good to go by since the average "normal" count is in the 400-1800 range. (just checked on that number too. in the past, the upper range was described as 1200. Right now, they use 500 as the low end of the range; but I still like the originial number of 400)

[Tonny2]

                 ojo.               Hello Leon!!, I think you have to let the doctor handle the bloodwork results, to tell you the truth, I think that I have seen twice my blood work results in 30 years and that is because I asked for a copy of them, usually they results go straight from the lab to my doctor. And I don’t do it just to avoid this confusing data. if there’s something wrong, the doctor will let me know. what is important to you is to know that your virus is suppressed and keep living your life. If there is something wrong with the lab resolved the doctor will let you know. As Jim said keep making plans for the future… good luck and I hope you have a good vacation… Hugs

[leatherman]

And I don’t do it just to avoid this confusing data. if there’s something wrong, the doctor will let me know.

my husband, Larry, is the same way.   

[Tonny2]

               ojo.        & Leatherman…Larry ia a smart man!!

[Leon82]

Thank you guys!
I don't know how to quote... lol... so i copy paste what Jim wrote:

In short, the normal range for the CD4:CD8 ratio is between 0.9 and 1.9.+-  meaning about 1 to 2 CD4 cells for every CD8 cell.

So, is there any possibility to reach 0.9 or even 1.0 cd4:cd8 ratio while i am positive and i am on treatment?

xxx
Leon

[Jim Allen]

I don't know how to quote...

The forum uses BBCode, the late 90s 

https://wiki.simplemachines.org/smf/Basic_bulletin_board_codes
https://en.wikipedia.org/wiki/BBCode

[Jim Allen]

So, is there any possibility to reach 0.9 or even 1.0 cd4:cd8 ratio while i am positive and i am on treatment?

Yes, you might, and its already nearly there with 0.89.

the normal range for the CD4:CD8 ratio is between 0.9 and 1.9.+-  meaning about 1 to 2 CD4 cells for every CD8 cell.

In untreated HIV the CD4:8 ratio drops over time. Once below 1, it is sometimes called an "inverted CD4/CD8 ratio"  meaning the immune balance is off (altered immune function) and immune activation (linked to the whole chronic inflammation).

You might see this number change over time as you have now started HIV treatment, but there is not much you can do about it as far as I'm aware so also no point stressing about it.

[Leon82]

Hey guys...i was looking again at my first blood work, before starting treatment.... I was tested positive in Syphilis 5,31 but i had syphilis 10 years ago, so doctor said it was normal... and in anti-HBs 1000 mIU/ml and anti-HAV 7.50 S/CO but i had done the vaccines for Hepatitis A & B some months ago, so this sounds normal too.
BUT I also noticed i was tested positive for toxoplasma 13.60  and CMV 250.0 AU/ml
But my doctor didn't mention anything. Is this normal? Do you think i need extra treatment?

Thank you for replies
xxx

[Tonny2]

                 ojo.              Hi Leon… do you have a cat? it seems that you have been expose to the parasite of toxoplasma and herpes CMV. I guess because of your immune system being a strong you don’t have to worry about it, but I recommend you to be proactive and talk to your doctor about it and try to investigate more about this situation. Remember that a patient with knowledge  is a better patient.… If you were in an AIDS situation you could be in problems, but like I said, talk to DOCTOR about it… Hugs

[Leon82]

I do have a cat, yes... My doctor told me to do vaccine against herpes, but not yet... he told me to do it later. I didn't know CMV has to do with herpes. Thank you for your reply Tony! Hugs xxx