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Author Topic: Diagnosed 3days ago, life seems over  (Read 4047 times)

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Offline Adonis1409

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Diagnosed 3days ago, life seems over
« on: September 17, 2018, 07:07:02 am »
Hi everyone,

Im normally not the guy that posts at forums, but i feel competely lost.

Im a married straight guy. After some health issues and a blood test, result came back that im hiv positive. I got this news friday afternoon.

I still dont really believe this is happening to me. Ive had some unprotected encounters years ago, but not with high risk people.

After 2days of denial and being scared and slighly suicidal, yesterday i told my wife. She is completely broken right now, as am I. We’ve been crying together for the past 24h. Of course question now is if she has it. We’ve been together sine 1year so were basically almost sure that she will have it too. I dont know. We will go to have her tested later today.

Im trying to read a bit about it online, but i break down in tears after a short while, and also it seems that info is not always the same. I had a talk with the doctor friday after the test results, and also with a psychologist, but i dont remember very well what they said.

So basically were full of tears, anciety and fear. Will she have it? Is  this the end of our lives together, can we ever have sex again, can we have children because we want that so much. Even if drugs are good nowadays, what will this do with our mind, our character. And will there be a cure for it in our lifetime? How can we ever go back to our normal lives, work etc

Im still hoping it was a mistake, bloodwork mixed up or something, but i guess i do know this is real.

I hope i didnt offend anyone with words ive written. Im completely new to this.




Offline JimDublin

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Re: Diagnosed 3days ago, life seems over
« Reply #1 on: September 17, 2018, 07:32:03 am »
Hiya

I am sorry to hear that you had a reactive result and I understand its given you a shock.

Most of us have been were you are now, so you are not alone however what you should be doing now is getting tested, confirmation testing. Just an antibodies reactive result on routine blood screen is not a diagnosis, its a screening test used to confirm a negative result (past the window period) and all other results i.e reactive need more specific testing and to be honest we see plenty of false reactive screening tests here weekly.

One additional word of advice to you is by the sounds of it you have not been testing routinely so also test for easier to transmit STI's whilst you are at it. The sooner you know and treat any conditions the better, this is very true for HIV and with treatment and care you can live a normal long and healthy life. 

Quote
So basically were full of tears, anciety and fear. Will she have it? Is  this the end of our lives together, can we ever have sex again, can we have children because we want that so much. Even if drugs are good nowadays, what will this do with our mind, our character. And will there be a cure for it in our lifetime? How can we ever go back to our normal lives, work etc

Sure many of us are parents here to healthy HIV negative children, we have sex and relationships and with treatment we can and will live long healthy and fulfilling lives. HIV is not a barrier to living your life with treatment.

Quote
I still dont really believe this is happening to me. Ive had some unprotected encounters years ago, but not with high risk people

Its not who you do it with, its simply how you do it. People are not high/low or no risk.

Wishing you well, but please follow-up with your doctor and until you have confirmation testing done and results to share I will ask you to only post in this one thread.

Jim
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Offline Adonis1409

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Re: Diagnosed 3days ago, life seems over
« Reply #2 on: September 18, 2018, 01:15:57 pm »
Thanks very much for your post and support!

I went to the clinic today. Unfortunately it is true, I have hiv. Its still all a blur for me and i dont remember all that was said, but the level of virus in my body is 75.000. Pretty big number to me, but according to the doctor its less than average for new infections.

They also tested all other stds: chlamydia, gonorroe, syfills and so on. Looks like i dont have any of those, but i really dont feel any relief about that all al. All i can think of is that some day i will die.

What are the chances according to you guys that a cure will be found in the next years? Im 34 right now. Do you guys think it will happen some day?

I have to go back to the clinic on friday. Then i will get medicines that i will have to take everyday. Apparently for the rest of my life.

Im so afraid about all of this. I keep crying and thinking im dreaming.

Offline JimDublin

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Re: Diagnosed 3days ago, life seems over
« Reply #3 on: September 18, 2018, 01:32:18 pm »
Okay well until you have seen the clinic still stay in this thread.

75K Viral load is not high, mine was in the millions at some stage that said you can't tell the age of the infection from the VL. Some people its higher than others,

Quote
All i can think of is that some day i will die.

We all have to die someday,  I know that sounds crude but I certainly will not be dying from well treated HIV. Its 2018 and with treatment that suppresses the virus you should expect to live as "normal" whatever that was going to be.

I am living with HIV and I have had kids, I have a career, I travel, I love, laugh and live like many people who live with a manageable illness I pop a pill a day to manage it and move on with my life.

Quote
Im so afraid about all of this. I keep crying and thinking im dreaming.

Being newly diagnosed is however a bit of a mind fuck I get it and it's normal to be concerned and wonder "what if" etc but this will settle, give you mind sometime to wrap your thoughts around it. Now don't read too much into the subject either but when you are ready here is easy to digest "Newly diagnosed" info pack: https://forums.poz.com/index.php?topic=2276.0

Life with HIV goes on as normal, its called "Living with HIV" Living being the key word here,  its simply not a big game changer, I mean a few clinic visits a year and perhaps at first a bit of healing as your system recovers but in short take your meds and live your life.

Expect to have to work, pay bills, pay the rent, fall in love, get married if you are into that or don't, have a career and buy designer shoes if it pays well, have kids if that's the plan, eat well and be fat if that makes you happy or go to the gym 3 days a week and be buff etc etc etc,

Simply put life with HIV in the scheme of things changes nothing and life goes on as normal, so if you have access to treatment in 2018 you should expect to live a long and productive, boring life as you normally would expect.

Quote
What are the chances according to you guys that a cure will be found in the next years? Im 34 right now. Do you guys think it will happen some day?

If you look back in this forum for decades you have people waiting for this, or thinking its around the corner but to be frank I do expect one in my lifetime. Further advancements in treatment, sure example would be taking the pills or for some people shots less often is in "real" development but I for one have not seen any development that will ever hit a cure in my lifetime.

I'm okay with that as HIV does not impact my life, I choose not to let it have such power over me.

Take it easy, keep us posted. I know its rough at the moment, but trust me when I say you will be okay and you are not alone.

Jim

« Last Edit: September 18, 2018, 01:38:15 pm by JimDublin »
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Offline geobee

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Re: Diagnosed 3days ago, life seems over
« Reply #4 on: September 18, 2018, 03:04:27 pm »
Hey Adonis1409,

If you weren't freaking out there would be something wrong with you.  I think all of us were when we first got the diagnosis.  But.... but...

But it's just a virus.  That's it.  Impossible (today) to get rid of but easily (usually) suppressed with medication.   

The fear of HIV is much worse than actually having it.   For me, I went on medication right away to at least "do something" about it.  It took me about 16 weeks to become "undetectable" -- can't see it in the blood.

I live a totally normal life.  Normal health, normal activities, normal everything.  I feel completely as I did before.  It still freaks me out mentally sometimes but, physically, everything is the same.   The biggest changes have been I take 2 small pills once a day, and go to doc every 3-4 months.   

As for a cure -- boy that sure is an easy train to hop on.   I think it's like a hurricane.  "Hope for the best, prepare for the worst."  Hopefully one day there will be a cure.  But, in the meantime, take care of yourself and prepare for having it for a long time.

Hang in there.  It really does get better.  This forum helps. 


Offline Archimexican

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Re: Diagnosed 3days ago, life seems over
« Reply #5 on: September 18, 2018, 06:08:50 pm »
Hi Adonis

You’ll be fine and you’ll live a long and healthy life.

I was diagnosed a few months ago and I was also shocked and don’t remember most of the first days but I do remember the first thing the doctor said to me,  “Don´t worry, you won’t die from this. I’d rather have hiv than any other chronic condition”. I remember that He was so relaxed about it that I thought it was fake, I didn’t understand what He was saying, but now after a few months on treatment I think it is true.

It is hard to believe it, but once you start treatment your viral load decreases really fast, mine was almost undetectable after just 3 weeks. Your immune system takes a little longer to recover but it will happen. After that, you’ll just have to remember to take 1 or 2 pills a day and that’s it, You’ll live a normal life.

The psychological shock is probably the most difficult part of the diagnosis. We grew up thinking that getting this virus is one of the worst things that could ever happen to anyone, so it is very hard to assimilate that it is now a manageable condition. This is not a moral issue, it is just a virus that can now be treated.

You’ll be ok man, I wish you the best :)

Offline MarkintheDark

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Re: Diagnosed 3days ago, life seems over
« Reply #6 on: September 18, 2018, 09:06:35 pm »
Welcome to the forum.  I'm sorry you and your wife have to deal with this.  But you'll be fine, as much as it doesn't feel like it right now.  I concur with everything that's been said here.  I've been poz 26 years.

Your life may feel consumed by this for a while.  You may be hypervigilant about every little cut or cough.  That's normal.  I can assure you from personal experience that the scrape from your lug wrench doesn't qualify for an ER visit. ;D  This is totally new to you.  You'll be learning some new terminology.  You'll be learning about treatment options.  You can always ask about our experiences here as other questions  invariably come up.  It seems you've a good doc and psychologist.  Definitely make use of them.

Your doc is correct about your current viral load.  Though you'll be inclined for a while to focus on numbers like your CD4 - I've been operating in the 150-250 range for years, up from low double digits - and an alphabet soup of other tests, the goal is to reach an undetectable (UD) level on the viral load.  Yeah, imo, it's that simple.  Depending on how your body reacts to meds, that could happen quickly or it could take months.  Meanwhile, just live your life.

You'll have a lot of choices on meds.  Yes, the sooner you get on them the better.  However, you may want to ask the good folks here about their experiences.  Treatment has progressed now to a simple daily single-pill regimen as an option.  On the horizon is a study in which I've been participating nearly two years for a monthly or bimonthly injections.  FDA approval in the States is likely shortly, though it may not be widely available for a couple years.

You mentioned reading articles online.  There's a lot of misinformation out there on treatments, so-called cures, horror stories left over from the 80s, etc.  Put bluntly, there's a lot of crap on the interwebs (the aliens who park their spacecraft on my roof and sneak into my bedroom hate it when I say that).  I think for starters this site is your best source for reliable information and experiences.  To be clear, there is no cure for HIV.  However, it's a manageable, chronic condition.  As many of us have heard from our docs, "Yes, you'll eventually die, but it won't be from HIV."
« Last Edit: September 18, 2018, 09:35:22 pm by MarkintheDark »
HIV dx - 02/93
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Offline poundcake

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Re: Diagnosed 3days ago, life seems over
« Reply #7 on: September 18, 2018, 10:32:20 pm »
I was diagnosed over 3 years ago. I had PCP and my cd4 count was like 7 and my viral load was around a million or more, dont really remember.  I cried about it and couldnt believe it for 3 days laying in that hospital bed just struggling to breath. Honestly I am not sure how many people thought I was actually going to live through the pneumonia, but I did and I rebounded well. Fast forward today, my life is better than it was post testing positive. I got married, my wife didnt care that I had it, even though telling her was the hardest thing I had ever done. This last spring I had my first child, which I didnt think would ever happen. She is healthy, both her and my wife are negative. Now today as of last spring my cd4 is in the mid 500's and I am undetectable. I take 1 pill a day, which was nothing new to me because I always took a pile of vitamins and other things anyways so it was just another one in the pile.

After this rambling I just want to assure you there is life after and its all of what you make of it. I forget I am even positive most of the time and Im living life and loving it. 

Offline virgo313

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Re: Diagnosed 3days ago, life seems over
« Reply #8 on: September 19, 2018, 01:10:41 am »
I cried also at first. Dont be to harsh on yourself & give urself some time to settle down. Like almost all of us here, life will be back to pretty normal. Take care & try not to worry too much. Thanks
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   ~ CD4 - 65 (7/03/16) / VL - UD
CD4 - 153 (8/09/16) / VL - UD (20) / CD4% -6%   ~   CD4 - 215 (11/03/17) / VL - No Result / CD4% -8%
CD4 - No Result (10/04/17) / VL - UD (20)   ~   CD4 - 455 (11/05/18) / VL - UD / CD4% -14%
CD4 + CD4% (18/10/18) - Dr not going to  do this anymore / VL - To test only yearly. This Sucks..!

Offline Loa111

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Re: Diagnosed 3days ago, life seems over
« Reply #9 on: September 19, 2018, 05:45:08 am »
Sorry to hear about your bad news, it is always a shock.

I was in your exact same situation just a few months ago, found out I had this after pneumonia landed me in hospital. I'd been feeling unwell for months before, lost weight etc.
Anyway, had to tell the wife (we've young kids too), go through all the worry if she had it (she's negative thankfully) and all the headaches around telling this news.

Good news is you will be fine!  :) And within months of treatment you will become Undetectable which means you also will be Untransmitable too. You won't be able to pass it to your wife if you keep strict to your meds. U=U google it, this was all new info to me.

Of course it is hard news to digest. For weeks n weeks I couldn't focus on my work, & spent all day/night reading stories of people who got this condition and live normal happy lives. I still think about it a lot in the back of my mind but life has not really changed at all. I do all the same things, gym, read go out.

Since I was quite sick and an advanced case, I've still a bit of recovery to do and build up my immune system again which might take a while, feel tired a bit, but that will all pass with time as I recover.

First thing Doc told me was "Do not worry, you will live to see your grandchildren. You are not going to die form this." Which helped a lot.

Since finding this out, I've kind of relaxed a bit in life. Before I was uptight about work, eating health, etc now I'm more focused on time with my family, a little less worried about what I eat, and enjoying quality of life. You might experience a new mindset too within time.

Very rarely mentioned or talk about it to wife, she is the only person who knows and I'm keeping it that way. So life goes on, quite normal.  :)

You will get great support and help on this forum, the members have been wonderful in answering my questions and worries, and they help my peace of mind a lot. So visit often, you'll get strong support here.
« Last Edit: September 19, 2018, 05:49:36 am by Loa111 »

Offline lightalltheway

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Re: Diagnosed 3days ago, life seems over
« Reply #10 on: September 19, 2018, 05:46:49 pm »
Hello,

Life is not over! it is just calling you up to offer a new perspective to see things around you.

You are not alone, we are all here for you. So please feel free to share your thoughts and journey details.

You will soon discover that with medication and good health monitoring that you will feel great about yourself. This medication will give you the option to live a normal life exactly like anyone without the virus.

You lead a happy life, you can plan to have your own kid .. its all possible and "No" is not a possibility. Just gather yourself and give time some time.

Light all the way,
Prince

Offline CaveyUK

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Re: Diagnosed 3days ago, life seems over
« Reply #11 on: September 20, 2018, 05:43:38 pm »
Just echoing what everyone else has said.

When I was diagnosed at xmas 2015 I was so scared for my long-term girlfriend as we had unprotected sex hundreds of time in the preceding couple of years.

She was negative. She jokes by saying she has 'magic blood'. In reality, it's just the odds at play as it's actually a tricky virus to catch (although obviously, it can happen with one exposure as many of us know).

It was a shock and I had the usual freak-out following diagnosis but things do settle down over time to the point where it becomes a really mundane thing. I'm far more scared of a myriad of other things rather than HIV, for sure. And at least I never have to worry about catching HIV ever again :)

A big help for me was my gf being supportive, and in the early days I dragged her to my clinic visits too, so she could hear things from the horses mouth rather than me relaying stuff, so she is pretty well educated about it now.

We used condoms for a while but once safely UD, we took (with my doc's blessing) the decision to go back to condomless sex and quite frankly that side of things are even better than before for us.

So now I pop a pill (well two) each day. I have a good job, house, car, go on holidays, have a drink, watch sport, travel around the world and basically do everything I did before. My health is better than when I was negative too as I'm more aware of it and the clinic visits check for a variety of things as a matter of course so if anything does pop up I can hopefully deal with it sooner, too.

I'm in my mid 40s (although I'll probably keep saying that for at least the next 9 years) and have no reason to think I'm going to kick the bucket anytime soon. In fact when you look at how treatments have advanced over the last 20 years I'd expect better and better treatments over the next 20, so I fully anticipate that I will eventually die as an old grumpy man with a shawl over my legs and a faint smell of piss in the air,  in an old peoples home. That's the plan anyway :)

It may not seem it now, but things do get massively better over time.
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Offline fabio

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Re: Diagnosed 3days ago, life seems over
« Reply #12 on: September 20, 2018, 05:49:14 pm »
Hello Adonis. I'm really sorry to hear about your diagnosis.  I think all of us had similar reactions to yours. It seems very complicated at the start And,I know,it's really scary but it will all get better in time.
This December will be a year since my own diagnosis and I can say I feel a lot better now,with the treatment.
Let me reassure you that you won't die. Yes,you will have to take pills,but who doesn't these days. There are things that don't have treatment options,thankfully hiv is something that we can control now. As long as you adhere to the treatment you will only get better.
As for family,there have been many marriages between a positive and a negative partner,with negative children  being born,either with artificial insemination (In vitro),or sperm cleansing (not really sure how they work,I'm gay lol).
Just know that we are always here for you,no matter what. I know it feels as if time has stopped and that the only thing you feel like doing is crying,but you're gonna come out of it stronger.
That's all I can say to you,the rest are repeated by the fellas that wrote the rest here ;).

Offline CaveyUK

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Re: Diagnosed 3days ago, life seems over
« Reply #13 on: September 20, 2018, 06:32:09 pm »
As for family,there have been many marriages between a positive and a negative partner,with negative children  being born,either with artificial insemination (In vitro),or sperm cleansing (not really sure how they work,I'm gay lol).

Years ago things like sperm washing was quite a thing, but since the improvements in treatment, couples can now conceive naturally which is just another thing that isn't off the table now for HIV folk (well, unless you are gay!) :)
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Offline Loa111

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Re: Diagnosed 3days ago, life seems over
« Reply #14 on: September 21, 2018, 04:45:58 am »
Apologies, posted in wrong post!

Offline Adonis1409

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Re: Diagnosed 3days ago, life seems over
« Reply #15 on: September 25, 2018, 12:16:14 pm »
Hi everyone,

Thanks a lot for your messages and support. They really mean a lot to me!!

I havent found the courage in the last couple of days to reply and give an update on my status. Ive been kind of depressed most of the time. I dont really cry that often anymore. Its more like i feel really numb and without energy, and just keep staring at the tv without really paying attention to what im watching.

Besides my wife and the doctors, i havent told anyone yet. I dont think i will do that. My family would never understand and i dont want to tell people at work or friend either. Some of them already know that something is wrong, i havent been to work in 2 weeks, and my family are starting to notice  the change in my behaviour. I need to find something to tell them but i dont want to tell the truth and im not a good liar. Anyone here has any suggestions? Especially at work theyre really concerned because i sent some texts saying i dont know when i will return to work. I know in the end its none of their business, but if i want to keep good relationships, i will need to give them some kind of explanation.

I went to the clinic last friday and had a talk with my doctor, and also with a therapy counsel (mainly about pills and how to take them etc) and also with a psychologist. They really know what theyre talking about so i do feel blessed to be living in western europe and having access to good treatment.

They started me on a medicine called Odefsey. Its 1 pill a day during a meal. I took my first pill yesterday evening, which was really confronting. I dont really feel any side effects yet, but im a bit afraid for it, since the doctor warned me there could be quite some side effects. I dont really feel different than the previous days, but its still early days of course.

My wife is a tremendous support for me. On the other hand she is also feeling sad and depressed and crying a lot. I guess this is notmal, we will need to figure out a way to live with this together. And it has a lot of impact. We wanted to start with children but now we will have to wait until im undetectable and so on.
Doctors told me that once youre undetectable the risk of transmitting the virus are basically zero. I keep thinking about that a lot, because i could never live with myself if i would infect my wife. She is my whole world so i would never take any risk. So even if everyone keeps saying the risk is very low, im not sure if i can have sex with her again unprotected, because even if the risk is low, it seems to me the risk is still there. Im still struggling with this. We really want children. Doctor also told me that sperm washing is not something they do anymore. This is something from the past they said and if you stick to your treatment you can have a baby the normal way. But somehow im still not convinced.

It all still seems so unreal to me, but i guess ive already said that enough.

Offline JimDublin

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Re: Diagnosed 3days ago, life seems over
« Reply #16 on: September 25, 2018, 01:19:46 pm »
Hiya,

Odefsey, cool. Look other than perhaps a bit of settling in you should not be expected any issues so stop looking for them.

https://www.poz.com/drug/odefsey

Your doctor is correct, you could conceive naturally and sperm washing is not normally needed, just be UD for 6+  months and remain adherent to your treatment.

Glad to hear your taking to a therapist face to face, you might want to consider taking to peer support groups face to face if that is available in your area.

Not sure what to say about the work situation, maybe I missed some details why your off work, I apologize if I missed that, but look if its the case a doctor has certified your unfit to work that normally covers short illnesses leave in Ireland and employers here in  are not entitled to know why. I would say check what your company policy is on sickness or illnesses leave.

Whatever the reason for being off work I do hope you feel better soon.

Jim
HIV 101 - Everything you need to know
HIV 101
Transmission and Risks:
HIV Transmission and Risks
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

Offline fabio

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Re: Diagnosed 3days ago, life seems over
« Reply #17 on: September 25, 2018, 01:31:01 pm »
Hello Adonis,I'm really glad you started the treatment. I wouldn't worry at all. I had the same reaction the first time I started with the pills (2 pills a day) ,but now it just feels like nothing. In about half an hour I'm gonna take my dose for the day. Also if you have severe side effects (which is rare btw) you will know. The only side effect I had from mine was flatulence (farting a lot,lol),but now I don't feel anything different. Remember you can always tell ur doc about any problems.
Dealing with people is hard for everyone. You always need to tell them stuff. I would suggest you only tell your co-workers about dealing with depression and that's it. You don't have any obligation to tell them,or anyone else,for that matter. For your parents it's a gamble. If they are very old I wouldn't upset them. If they seem very strict,religious or anything of that sort you still shouldn't tell them. Tell them you were just a bit depressed,and that you're going to a therapist to sort it out and that you will be fine. Try to keep strong for them.
I live in Greece and ( I don't know how things are where you live) people here are very judgemental. I have told my parents and brother because I didn't feel I could make it on my own. And they have been by my side through every step. They have defended me,sheltered me and loved me no matter what. You can talk about things with your wife as well,things that bother you,then I think you're gonna feel a lot better.
As time goes by,I think you're gonna feel better. Don't let the virus take you over. Remember,we won't die from hiv ,but it will die before we do ( I'm certain of it). Don't lose hope we are all here for you. Keep in touch with your doctors and try to make efforts to have a child with specialists help.
Please update on your well being, someone if not me will answer back ;).
« Last Edit: September 25, 2018, 01:34:09 pm by fabio »

Offline CaveyUK

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Re: Diagnosed 3days ago, life seems over
« Reply #18 on: September 25, 2018, 07:08:39 pm »
So even if everyone keeps saying the risk is very low, im not sure if i can have sex with her again unprotected, because even if the risk is low, it seems to me the risk is still there. .

Everyone has different risk tolerances and my only advice would be to not put yourself under undue pressure about all this and just see how both you and your wife feel about it when things become more stable.

In my case it was my gf who led the charge to ditch the condoms. I took her to most of my early clinic visits so she is fairly well versed in the whole condition and she knows about the whole U=U thing, spoke to my doctor and was happy - eager even - to ditch the condoms. Her view is that she won't catch it, and if something crazy happened and she defied the science and did then she would 'just deal with it'. Her pragmatism is one of the things that has really helped through all this, but not everyone is the same and for some people it takes time to get to grips with things.

So however you feel now, may not be how you both feel in a few months or years. Especially if having a kid is important to you both. Just give it time to all sink in properly.
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Offline Dfwguy

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Re: Diagnosed 3days ago, life seems over
« Reply #19 on: October 10, 2018, 03:34:40 pm »
Adonis, 33 years ago, I thought I was a goner.  And here I am , 33 years later- still kickin’ and still hiv poz after 33 years.   It is not a death sentence. Thnk of it in terms of a chronic medical thing like diabetes, manageable with meds.
HIV dx .  08/1985

Offline JosephP

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Re: Diagnosed 3days ago, life seems over
« Reply #20 on: October 12, 2018, 07:35:59 pm »
Adonis, 33 years ago, I thought I was a goner.  And here I am , 33 years later- still kickin’ and still hiv poz after 33 years.   It is not a death sentence. Thnk of it in terms of a chronic medical thing like diabetes, manageable with meds.

And as you so beautifully put it" "The fear of HIV is much worse than actually having it."  ;D ;D
We are all dealing with this. And we will live long and productive lives!! AND, yes the Lord is my shepherd. Life is good... And thanks for the meds!

Offline Adonis1409

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Re: Diagnosed 3days ago, life seems over
« Reply #21 on: November 09, 2018, 09:16:20 am »
Hi everyone,

Hope everyone is hanging in there and staying strong!

As for myself, next week will be 2 months since my diagnosis. Its been a strange time so far, i have gone from being devastated and crying all the time, to being numb and indifferent to everything, and now the last weeks its as if im trying to block and ignore this while hiv thing.

I had a checkup at the clinic today (probably the reason im writing here now) but I just wanted to get out of there asap. I didnt feel like asking any questions and the only thing I really heard is that all is well and that viral load has dropped from 75000 a month ago to 780 now. So not undetectable yet. I didnt ask for white blood cells and so on, and i regret that a little bit right now. Its as if I just dont want to have anything to do with the whole situation, I also havent read anything the last weeks about hiv, havent been on this forum, etc.

I do take my odefsey pill everyday around the same time without much effort so that is good. Ive had some side effects the first weeks, mainly headaches, diarrea and some skin rash, but nothing really seriois, and this week and last week i dont have them anymore. . But still my head feels different somehow. Like a constant cloudy feeling in my head.

Mentally its a different story. I feel depressed most of the time, dont sleep well (really late), been having bad dreams and nightmares, cold sweats at night.  And i just dont have a lot of motivation togo to work. I have a pretty demanding job, and im totally neglecting it, which also impacts people working for me. I kind of feel bad about that too.

Im not sure if my whole avoidance (not really talking or reading about it) is such a good idea. My wife is afraid im suppressing the feelings and i should talk about it more often. I didnt go to any peer groups, havent talked to anyone that has hiv, etc. I just dont feel like doing that for some reason. But now im starting to fear that this approach is not helping me digest the whole thing.

Ive had protected sex with my wife a couple of times. This is really difficult. I just dont feel like having sex mich, and the whole condom thing is just depressing and makes the mood go away. We had a very active sex life before my diagnosis so this is a big impact on our marriage, obviously. Also we were planning to have our first kid, which we now have delayed of course. A question related to that: some say you have to be undetectable at least 6 months before unprotected sex. Others say 3 months. Probably a stupid question, but do you guys have any advice on that?

Also another question related to the medicines. I was precribed Odefsey which im taking every day. But I have no idea why they started me on that one and not another. A couple weeks back i did some searching on meds but there are so many different ones I didnt feel like really digging into it and understanding the difference between them. But should I challenge my doctor about it? For examole
I had read somewhere that A med called Biktarvy was currently the best medicine out there. You guys have any advice on that?

Anyway, thanks to all for taking the time to reply and support. I really admire you guys for doing that, although i dont know where you find the strength :)



Offline JimDublin

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Re: Diagnosed 3days ago, life seems over
« Reply #22 on: November 09, 2018, 02:00:59 pm »
Hiya,

Look .... it sounds like you are having a rough time and I can only stress that we are here if you need us. You are not alone in what you are going through, most of us have been in your position at some stage and we rarely judge so do vent here if you need it.

Also take a moment to go through this thread: https://forums.poz.com/index.php?topic=69487.0

Quote
  But still my head feels different somehow. Like a constant cloudy feeling in my head.

Mentally its a different story. I feel depressed most of the time, dont sleep well (really late), been having bad dreams and nightmares, cold sweats at night.  And i just dont have a lot of motivation togo to work. I have a pretty demanding job, and im totally neglecting it, which also impacts people working for me. I kind of feel bad about that too.

Im not sure if my whole avoidance (not really talking or reading about it) is such a good idea. My wife is afraid im suppressing the feelings and i should talk about it more often. I didnt go to any peer groups, havent talked to anyone that has hiv, etc. I just dont feel like doing that for some reason. But now im starting to fear that this approach is not helping me digest the whole thing.

Okay I really do think it would be beneficial for you to speak to your primary doctor/GP first. I hear you when you say you don't want to talk to a group or peer support but perhaps the first step is talking to your doctor and through them getting some one on one therapy/support.


Quote
Ive had protected sex with my wife a couple of times. This is really difficult. I just dont feel like having sex mich, and the whole condom thing is just depressing and makes the mood go away. We had a very active sex life before my diagnosis so this is a big impact on our marriage, obviously. Also we were planning to have our first kid, which we now have delayed of course. A question related to that: some say you have to be undetectable at least 6 months before unprotected sex. Others say 3 months. Probably a stupid question, but do you guys have any advice on that?

Take your time, you are still digesting a diagnosis and having a rough time mentally.
Would it help for peace of mind if your partner started PrEP for a few months ??? Perhaps something to talk about as a couple.

Its 6 months on the UD part here is the consensus statement that may give you peace of mind. http://www.preventionaccess.org/consensus

Keep in mind everyone loves to quote the recent studies but there is over 20 years worth of evidence and studies to back this up.

People living with HIV on ART with an undetectable viral load in their blood have a negligible risk of sexual transmission of HIV.  Depending on the drugs employed it may take as long as six months for the viral load to become undetectable. Continued and reliable HIV suppression requires selection of appropriate agents and excellent adherence to treatment. HIV viral suppression should be monitored to assure both personal health and public health benefits.

NOTE:   An undetectable HIV viral load only prevents HIV transmission to sexual partners. Condoms also help prevent HIV transmission as well as other STIs and pregnancy. The choice of HIV prevention method may be different depending upon a person’s sexual practices, circumstances and relationships. For instance, if someone is having sex with multiple partners or in a non-monogamous relationship, they might consider using condoms to prevent other STIs.


Quote
lso another question related to the medicines. I was precribed Odefsey which im taking every day. But I have no idea why they started me on that one and not another. A couple weeks back i did some searching on meds but there are so many different ones I didnt feel like really digging into it and understanding the difference between them. But should I challenge my doctor about it? For examole
I had read somewhere that A med called Biktarvy was currently the best medicine out there. You guys have any advice on that?

Odefsey is a very modern combo. https://www.poz.com/drug/odefsey

Things that can factor into the choice of drugs, cost, availability, drug resistance profile, other unrelated medical problems, history etc etc etc.

I would tell you that personally "Triumeq" is the best drug combo in the world... for me and this might not be the case for others. Biktarvy is very new and not available everywhere, might not suit your needs. This is something to discuss with your doctor. 

Take it easy

Jim 
« Last Edit: November 09, 2018, 03:33:44 pm by JimDublin »
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Offline fabio

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Re: Diagnosed 3days ago, life seems over
« Reply #23 on: November 09, 2018, 02:14:49 pm »
Everything is gonna get better in time (the Leona Lewis song...am I the only one that remembers that?). It's all hard to swallow at first,but I'm sure things will get better and you will have a more positive outlook on your life.
As for the meds,if you have severe side effects you can ask your doc to change I think. Personally I don't mind mine,so I'm sticking on them. I think they pick up the meds based on your first exams,not really sure to be honest.....mever really searched about it.
I wish to you all the best and don't be scared to ask more questions,or even read different stories as well. That helped me a lot to come in terms with the condition. I also post questions here ,regardless how unrelatable they are,I always know someone will always be here to talk to. :)

Offline CaveyUK

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Re: Diagnosed 3days ago, life seems over
« Reply #24 on: November 09, 2018, 02:32:31 pm »
I didnt ask for white blood cells and so on, and i regret that a little bit right now.

Don't. The only number that matters to you right now is your Viral Load. Get that UD (which will be soon) and keep it there by taking meds. Some people like knowing a myriad of other lab results, but for most it can just cause unnecessary anxiety and panic. Once you are undetectable, your body will start functioning in much the same way as if you didn't have HIV. If there are any numbers to worry about, your doc will tell you so if they don't, put it out of your mind.

Quote
I do take my odefsey pill everyday around the same time without much effort so that is good. Ive had some side effects the first weeks, mainly headaches, diarrea and some skin rash, but nothing really seriois, and this week and last week i dont have them anymore. . But still my head feels different somehow. Like a constant cloudy feeling in my head.

You should ultimately feel completely normal on meds, although it can take a little while for some. IF there are any continued side effects then discuss with your doctor as there are lots of options. The combo I'm on, I don't notice in the slightest - in fact, I get worse side effects from over the counter decongestants than I do HIV meds.

Quote
Mentally its a different story. I feel depressed most of the time, dont sleep well (really late), been having bad dreams and nightmares, cold sweats at night.  And i just dont have a lot of motivation togo to work. I have a pretty demanding job, and im totally neglecting it, which also impacts people working for me. I kind of feel bad about that too.

The good news is that psychological issues are something you can proactively address. In 2018, the issues with HIV are far more psychological than anything physical.

Quote
Im not sure if my whole avoidance (not really talking or reading about it) is such a good idea. My wife is afraid im suppressing the feelings and i should talk about it more often. I didnt go to any peer groups, havent talked to anyone that has hiv, etc. I just dont feel like doing that for some reason. But now im starting to fear that this approach is not helping me digest the whole thing.

I don't necessarily think support groups are right for everyone. I haven't been to one. I do think being open to talking about it to your wife would probably be helpful, although in your own time of course. I also think it's where forums can be good as you can retain any anonymity and still read and contribute.

Quote
Ive had protected sex with my wife a couple of times. This is really difficult. I just dont feel like having sex mich, and the whole condom thing is just depressing and makes the mood go away. We had a very active sex life before my diagnosis so this is a big impact on our marriage, obviously.

As I've said before, re-assess once you are UD. My gf was super keen to ditch condoms for the same reasons you stated. We have actually found that our sex life is drastically better than it was pre-diagnosis for some reason.

Quote
Also we were planning to have our first kid, which we now have delayed of course. A question related to that: some say you have to be undetectable at least 6 months before unprotected sex. Others say 3 months. Probably a stupid question, but do you guys have any advice on that?

It's 6 months to be safe, in case there are some levels of virus in semen that are lagging behind the levels in the bloodstream. That said, we were naughty and didn't wait quite that long but that was our own risk decision.

Quote
Also another question related to the medicines. I was precribed Odefsey which im taking every day. But I have no idea why they started me on that one and not another. A couple weeks back i did some searching on meds but there are so many different ones I didnt feel like really digging into it and understanding the difference between them. But should I challenge my doctor about it? For examole
I had read somewhere that A med called Biktarvy was currently the best medicine out there. You guys have any advice on that?

There are many great combos. You are on one, Biktarvy is one of the latest ones, and there are ton's of others. All have pro's and con's, but every mainstream drug out there works just as well and the only decision points for some people come down to things like lifestyle, other drugs taken and so on.

I'm on a combo of Tivicay (Dolutegravir) and Truvada. Truvada has been replaced by v2 now (Descovy) however I seem to be fine on v1. Dolutegravir doesn't have a booster component and so I don't need to take with food, which helps because I tend to eat at weird times. As both drugs come from different manufacturers, I have to take as two pills once a day rather than one, which I'm fine with but some people psychologically prefer a single pill. It's all down to the individual and their own situation.

And there is nothing stopping you discussing this with your doctor in due course if you feel another drug would suit.

Quote
Anyway, thanks to all for taking the time to reply and support. I really admire you guys for doing that, although i dont know where you find the strength :)

It doesn't seem like it now, but in reality once you are stable - and probably passed your first year since diagnosis, HIV becomes - to many - pretty mundane. I rarely think too deeply about it any more, unless I am contributing to this forum and even taking my meds, which used to be a daily reminder, is now more or less muscle memory - just like pulling on my socks. You'll get there eventually I'm sure :)
« Last Edit: November 09, 2018, 02:34:59 pm by CaveyUK »
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