Almost AIDS but don't want to take drugs

[poison_ivy]

Hello,

I caught HIV on 24th September 2010, seroconverted a few weeks after and was diagnosed at the end of October 2010. I think at the start my vl was sky high but my CD4 was about 1400, it's steadily declined over the years and i've been against starting the meds.

I've just had a check up and my CD4 was 250, vl over 100k. The doc wants me to start treatment immediately but I don't wanna!

HIV has never been a problem for me, I never really thought about it and my family and friends that I told were all supportive and well educated - "HIV is nothing these days you just take a pill". The health services on the other hand - nurses, doctors and anyone working in the NHS - are the most uneducated and prejudice. I was sacked from an admin job in the NHS when they found I had HIV when all i did was sit at a desk and type - sack the lurgy girl!
My problem is my mental health; i've had severe mental health all my life and struggled massively because of it, compared to any long term illness or terminal disease HIV is a walk in the park (personally).

There is a point to this post and that is my question; how long from now can I expect to live without any meds? considering the progression of the disease in me just over 6 years and i'm nearly at AIDS. I think it will be about a year with something nasty getting hold of me at the end for a painful death.

I'm planning on getting equity out of my mortgage and having one hell of a year!! 

Poison

[Ptrk3]

You should consider seeking mental health counseling for your issues, if you are not already, because your apparent depression may be affecting your ability to make appropriate decisions related to your physical health.

If you were in the United States, your CD4 numbers do not put you near AIDS:  instead, you would be classified as having AIDS (CD4 count below 200, even in the absence of an opportunistic infection).

At this point, there is no timeframe to determine when you could come down with a number of opportunistic infections.  You could come down with one tomorrow, or in a month, or longer, but you will surely come down with one, and it could kill you in fairly short order or cause you to linger through a horrible demise.

You are now playing with fire.

Listen to your doctor and start a proper antiretroviral regimen as soon as practicable:  your health, life, and future depend on it.

[poison_ivy]

Thank you for responding Ptrk3, I am under mental health care in the UK and have been for a long time: community mental health team, counselling, i've also got my very own psychologist.

This for me is like being set free, i've made many attempts to end my life over the years - obviously they have failed as if anyone knows trying to go against the bodys instincts is very difficult - now I have a legitimate way out.

Sorry to be so morbid, I didn't mean to bring a cloud of negativity to the forum. Thank you for your advice, i'll speak to my mortgage adviser - the house is worth a lot more than the mortgage i have so when I die they'll get the money back and more!

Poison

[poison_ivy]

another quick question; Is it possible to be allergic to all HIV meds? Has anyone heard of this?

thanks

[Jim Allen]

Look I can only agree with Patrick, if you are struggling with mental health issues than continue to work with your therapist or seek one if its not working out.

As for the death well your already at greater risk with the low CD4 counts not to mention the damage done that is not measurable. Listing to your doctor and start treatment is all I can tell you, as ill be frank this is a slow and painful and not a pretty way to go and good chance is you will suffer going out this way.

Is it possible to be allergic to all HIV meds?

It is possible to be allergic to everything, that is the truth. As for meds lucky they  run tests for hypersensitivity before starting treatment and you have a number of options should a treatment not suit so you should not expect problems with them, and no you will not be allergic to all of them.

Jim   

[poison_ivy]

Thanks guys, sorry to bring a downer. I can be a bit of a nihilist at times 

[Jim Allen]

Well you can read here a nice post on starting treatment : https://forums.poz.com/index.php?topic=51849.msg719533#new

You might find some of it useful.

Jim

[Jim Allen]

So what treatment have you been offered BTW?
And when will you next appointment be at the clinc?

Jim

[poison_ivy]

Thanks for that i've just had a read, my next standard appointment is April but the doctor rang me this morning asking me to book an appointment next week. I haven't been offered any treatment yet, I think that's what she wants to discuss.
I wouldn't be able to get time off work to get used to the drug, my doctor said i'd need to take a month off!! is that standard?

[Jim Allen]

I've never had to take time off due to HIV meds. Other than a few days of adjusting its been mainly a walk in the park. I once had a drug that did not agree with me but the solution was a simple one, I switched problem solved, and I was a rare case.

You will be getting modern treatment so talk to the doc and find out why during the next meeting she want to give you a months certificate off work, first I've ever heard of it.

Also find out what the treatment is, and you might also be put on Co-trimoxazole an antibiotics. The Co-trimoxazole whilst recommended and needed did cause me some hives and tummy problems but its normally a short course and the effects can be managed.   

Jim

[poison_ivy]

Thanks Jim

[CaveyUK]

Hi Ivy

If I'm reading this right, you want to kill yourself and see HIV as a convenient way to do this?

I think you will know the advice you will get, but I'll say it anyway

Firstly, HIV in 2017 is a condition which IF treated, will afford you a normal lifespan. The latest meds are great - most people get no discernible side effects. I know you say HIV isn't the main problem, but getting onto treatment and getting that sorted will remove one variable from everything which will allow you more time to get your head in a better place.

I'm sorry you have had a hard time at work in the NHS, and with the NHS in general but I can honestly say that what you are saying (about the doctors and nurses, specifically - not about your old boss) is not my experience. Compared to regular GPs, I have found the clinic where I go to amazingly supportive, comforting and knowledgable. You are not tied to one clinic either, so if you don't like the service you are getting from there you can go to another one.

Dying from AIDS may sound like a way out but it's very unpredictable. As others have said, it could be tomorrow and really quick but more likely it will be a collection of non-fatal but stigmatising and disabling conditions leading up to a drawn out process eventually leading to death. You only need to take a look at history of the 80s and early 90s to see how people would become walking skeletons, blind and covered with lesions as they were on that path. With modern treatment being so benign and with the ability to get you into normal health so quickly, choosing the other option sounds masochistic in the extreme.

You really need to get on meds ASAP in my opinion. Then you need to get counselling and support for your mental health issues. Also seek peer support if necessary - the Terrence Higgins Trust have counsellors who can talk to you over the phone or via Skype if you prefer.

It's really not too late to turn everything around, but time is clearly running out so remove the immediate risk factor and then spend a little time re-assessing.

I know the message is predictable, but it is really important.

I wish you all the best with whatever you do choose, but please don't consider letting HIV running it's course as an option.

[mecch]

AIDS is a terrible suicide plan.  If you want to kill yourself, that is something you can discuss with a therapist or social worker.  There are even people who help with assisted suicide in this world, and they would never recommend such a drawn out and painful method such as AIDS.
Of course, the recommendation is to treat your suicide ideation.
And to treat your HIV.

You do realise you could treat your HIV and take your time treating your suicide ideation.

Not only is AIDS horrible for most people who die of it, it is absolutely horrible for friends and families.  And its terribly expensive - all the hospital interventions, which you might not even be able to say no to, you realise. If you are in a terrible state.

I'm sorry to say, this option for suicide isn't very kind to yourself or others or society. You read like a person who isn't unaware of others in this world so its a bit confusing.

 Well thats my 2 cents.

[Tonny2]

        OJO         HELLO POISON_IVY...YOU DO NOT WANT TO GET AIDS AND DIE FROM IT, TRUST ME, IT'S TERRIBLE. I LIVED WITH AIDS TWICE, AS A MATTER OF FACT, I LIVED WITH AIDS FOR FIVE YEARS, THE OTHER TIME IT WAS JUST FOR ONE YEAR, AND IT'S NO FUN. YOU WILL GET ALL KIND OF INFECTIONS, THAT EVENTUALLY, THE DOCTORS WILL TREAT, UNLESS YOU HAVE A LIVING WILL, REFUSING TREATMENT...I THINK YOU HAVE TO START TREATMENT AND KEEP TAKING CARE OF YOUR MENTAL ISSUES...EVERYBODY IS DIFFERENT WHEN TALKING ABOUT ALLERGIES TO THE MEDS, YOUR DOCTOR WILL LET YOU KNOW ABOUT THIS TOPIC...I WISH YOU THE BEST OF LUCK AND I HOPE YOU MAKE THE RIGHT DECISSION, STARTING TREATMENT....AGAIN, WISHING YOU THE BEST AND I'M SO SORRY ABOUT YOU WANTING TO KILL YOURSELF, LIFE IS SO BEAUTIFUL EVEN AFTER AN HIV DIAGNOSIS
                                                                                                                    OJO

[poison_ivy]

Thanks guys.

As you've probably guessed i'm not a young girl. I'd also like to think i'm well educated on mental health and HIV - i've had years to investigate and philosophise.

I know aids would be a horrible way to go and i am in no way trivialising such a death. There are better ways.

Poison

[CaveyUK]

Thanks guys.

As you've probably guessed i'm not a young girl. I'd also like to think i'm well educated on mental health and HIV - i've had years to investigate and philosophise.

I know aids would be a horrible way to go and i am in no way trivialising such a death. There are better ways.

Poison

Indeed there are. So get on HIV treatment so that can be put away in a psychological box and then see if you can't sort the mental side of things out before doing anything rash (even if you consider that it is a well thought out approach, it really isn't!)

[poison_ivy]

I see where you're coming from but HIV drugs are very expensive and so is mental health care so it would be a dear do to keep me alive until i'm a pensioner when I have a poor standard of life anyway.

I own my own home but it's worth more than I paid and I have no partner or dependants....

A more fun idea would be to tap the equity on my house and live like rock star for a year! Dying like a rock star optional but a lot better than the prospect of aids.

[Ptrk3]

Except you may not die like a rock star (Freddie Mercury excluded).  You may die like this:

http://time.com/3503000/behind-the-picture-the-photo-that-changed-the-face-of-aids/

and not within a year.

There are many programs available to mitigate the costs of HIV medications, and many of them are not dependent on your net worth or annual income, so medication expense should not be a reason for you to choose to forgo retroviral medication.

Anyway, your decision is yours alone to make--I understand and appreciate that--but you should consider making an informed decision, based on the facts, and not just because of emotion, especially if you are also suffering from depression.

Good luck to you, whatever you decide.

[CaveyUK]

I see where you're coming from but HIV drugs are very expensive and so is mental health care so it would be a dear do to keep me alive until i'm a pensioner when I have a poor standard of life anyway.

The HIV drugs and psychiatric treatment is free to you, and the HIV meds are about to become quite cheap with generics for first-line choices becoming available shortly anyway. If you are talking about sponging from the system then it's a bit of a daft argument....you pay NI and taxes throughout your life and then feel bad about using the services they provide? If it really bothers you, make sure to ask the doctor to put you on the cheapest drugs (to the NHS) they can, and I assure you they will...

I own my own home but it's worth more than I paid and I have no partner or dependants....

No but you have 'friends and family' who you mentioned previously. How do they feel about your plan to metaphorically blow your brains out, either via AIDS or in a 'Leaving Las Vegas' style party binge? It's easy to underestimate who suicide affects.

A more fun idea would be to tap the equity on my house and live like rock star for a year! Dying like a rock star optional but a lot better than the prospect of aids.

Dying doesn't sound like fun to me, in any form - and especially not of AIDS.

Given you could take a pill a day and never have to worry about AIDS again, the comparison against other ways of dying is moot really.

If you really want to tap the equity then do it, downsize and then use the money to have some fun and maybe help others to get some meaning back in your life.

But really, please please please talk all this through with a counsellor. None of it is vaguely rational and I assure you, you will look back and be glad you decided to stay alive.

Sorry if I sound a bit direct, but you've talked yourself into this mindset - you just need to talk yourself out of it again, and seek help to do that.

[Jim Allen]

But really, please please please talk all this through with a counsellor. None of it is vaguely rational and I assure you, you will look back and be glad you decided to stay alive.

Sorry if I sound a bit direct, but you've talked yourself into this mindset - you just need to talk yourself out of it again, and seek help to do that.

OP I agree firmly with the above.

Reading the thread back well i am less sorry if this sounds blunt but you say that you like to think your well educated on the topic however the questions and statements made so far are that what we see from newbies.

I think you need to actively engage with your therapist and also with your HIV consultant to get updated on current treatments, costs etc etc, also to add the NHS like Cavey pointed out will provide you with the drugs with no cost to yourself and they are switching more and more to generic drugs that do not cost them the same as it used to.

Anyhow whatever you do wishing you all the best. 

Jim 

[harleymc]

Whether or not you choose to die a messy and undignified death is entirely your own decision.
BUT there is no reason for any of us to be unhappy with life and depressed and that includes you.

You might as well spend your remaining days happy, so set to on the mental health issues.

[em]

I read this and thinking some thing similar happened to me. I had thought I should  die rather then face the oncoming devastation AIDS was going to cause me when I die. When i had found out I had HIV there was AZT and it did not cure or treat it just put off the virus for a while and gave you some small amount of hope that something might be out there that might help. YA right not even close to a "similar thing" ! Maybe a twisted inverted similarity  I wanted to die rather then face the ills this virus had in store from me that i had seen others die from.

so now you want to let the virus take you even though there are medications that can help?

you had a good run of health now let the medication give you many years of life still yet to live. Use the equity in your house to fix it up. maybe even buy something for yourself not to extravagant do not want to die from ruined finances but something nice everyone once in a while  Is there anything you wanted to do as a child? sorry not trying to high jack the thread or nothing but. doing things from my child hood I wanted to do as a kid with younger relatives gives me a feeling of having done something worth doing.

you say you are not a young lady so does that mean you have reached your hundredth birthday yet? well then surely a lot of living left to do.

 letting the virus do its thing while there are medicines that keep in check even letting you have children without infecting them? Janet Jackson just had her first kid at fifty granted she has enough money to get someone else to tend to the child but still unless you mean by the age thing you have hit menopause  there are always other people out there with lives that might let you in and be part of . like the people here are doing trying to show you there is something worth living for 

I know it has already been said; the keep trying thing ; but I am just retelling what has already been said by saying keep on living the medication is not that bad now at least while there is some. cycling thought going round and round in my head from being angry that i had lived through no meds to now that there are meds and someone wants to give in and give up now that the worst is behind us.

granted I am old and miss the night life and getting out but with age you do loss somethings. sorry total not relative to the topic at hand but feeling old myself.

I hope you see your way clear to take the meds and keep going some day you will get to say i have been hiv+ for more then a couple of decades  and it has not been so bad  I guess

[poison_ivy]

I know my thoughts and ideas are to most ridiculous and incredibly selfish and I agree they are. My brain isn't wired up like normal people (whatever they are ), I have no fear of death just an exhaustion from living. Please don't read on if you're sensitive and struggling mentally yourself as the following is quite negative.


Prior to my birth I didn't exist for billions of years and the same will probably be true after my death. A handful of people will mourn my death but after decades of causing pain to most around me it seems much kinder than inflicting many more decades.

I'll give a brief history of why I am such a miserable bitch;
Born in the 80s to two idiots who didn't want children and were about to split up anyway, continuously told throughout my childhood I was a mistake and have caused their suffering by existing.
My mother caused  the most damage - she believed I was evil and made sure I and all of our family and friends knew so, I was consistently told I was evil and everyone hated me.
Teenage years - the suicide attempts started and my mother coined the nickname "suicide Sal" for me. I spent all my teens seeing various counsellors and psychologists and occasional stints in adolescent units where again I was told I was naughty and caused everyone around me pain and suffering.
Adulthood - damage already done- I enter into many damaging and abusive relationships due to me never experiencing a healthy one. Many more failed suicide attempts and stays in adult psychiatric units which are basically prisons - you are there because you are mentally ill and the mentally ill are bad people and should be punished.

Here I am after a serious but failed suicide attempt a month ago, same thing different day. I'm under the "care" of various mental health services which treat me with disdain and contempt because I have brought this on myself, I am an evil person, the mental illness I have basically suggests I am evil and it is an un-treatable illness.

People tell me I should be thankful for being alive, thankful for this gift which is life and to go against it is selfish and evil. I didn't ask to be born, that choice was taken away from me and i've been punished for being alive yet i'm not allowed to die. This life is punishment, hell is life on earth.

Sorry if I upset anyone but this is how I feel and have so for many years.
Poison

[poison_ivy]

On A more positive point to my little rant I have booked in with my HIV doctor to discuss meds.

 there is always a flicker of hope, it's just sometimes the size of a pin prick in a vast dark chasm.

[mecch]

Do you understand that if you don't have hope about AIDS being quite manageable, it is because you have mental illness and are not in touch with reality?  Again, you don't type stupid so you have obviously received both the scientific information and you are faced with a few million people who are living quite well with HIV. 
This is about your depression or whatever mental illness you have.

[poison_ivy]

Hi Mecch,

Yes I understand how completely manageable HIV these days similar in a sense to managing diabetes. Medical advancement has been able to suppress the virus to a point where it has almost no adverse effects on the body, I could say to a point where it is almost eradicated.

I understand many of you have experienced the illness from the start and witnessed close ones passing in a most horrific way, i'm sorry that you had to go through that and I apologise if i upset anyone with my lack of regard for myself.

My issue is very much a mental health one and due to various factors and my childhood having a massive influence I do have a bleak view of reality but then a persons view of the world may be vastly different to the next, my view of the colour purple may be vastly different to yours.
The world saddens me with greed and hate, a massive fart has been elected as leader of one of the most powerful nations on earth and he's undoing everything good that has ever been fought for. We're going backwards into prejudiced and bigotry, acceptance should be a basic human right but you're only accepted if you do as you are told.

Some people don't understand why I listen to the music i do and tell me it's damaging to me, I don't ask them to understand just to accept. I don't understand Christianity or why people follow religions but I accept those who do.

[Jim Allen]

Hi

Look the short of it is out of the problems you are facing HIV does not need to be one of them, or to be more factual its the easiest one to manage.

Wishing you all the best with the mental health challenges.

Jim

[WowThatWasLifeChanging]

Your post makes me sad. Certainly you have something in your life worth living for? Happiness in some aspect or another? I lost my kid a few years ago and dealing with depression can be difficult. I hope you do try the meds and see that they aren't so bad. I've taken quite a few, currently genvoya.  I'm sure they affect each person differently but many will tell you the short term side effects are minimal.i have more side effects from my Wellbutrin antidepressant!!  No need at all to take time off work, you won't feel different. Most side effects subside after a week or so such as headaches. I take my med at night and go to sleep and don't think about it again. I was allergic to my first med and I broke out in hives. In the grand scheme of things that wasn't terrible. If you don't do something to get your cd4 count up your immune system will start to shut down and you will be indefinitely off work. The course of dying isn't always easy, and can often be very expensive.   I pray that whatever decision you make you find peace with it. But I think that fact that you are here talking about it and the fact that you get counseling for mental health shows that you're a fighter and your fight isn't over. Hope to come back to a post that you started meds and had a cd4 bounce back!

[CaveyUK]

Born in the 80s

You said you weren't young! You are a mere baby!

You have your whole life ahead of you still.

For goodness sake, get on HIV treatment TAKE CONTROL and then work with whoever you need to in order to get in a better mental place. You potentially have 50+ years left to live, and whether you live those years to the max or sit and complain about the past really is up to you. But at least remove the one variable which will be unstoppable and will make you and everyone around you miserable, by getting on HIV treatment and ensuring you adhere to it.

The moment you start ART, you are doing something positive, something which will help restore your health and don't underestimate the psychological boost in doing that. It won't remove your other issues which you still need help for, but it will prove to yourself that you are in control of your own destiny, and you know the old saying 'Positive things happen to positive people'? Well, that would be true in every sense of the term for you I'm sure.

[em]

sorry I do not plan on rereading this thread in its entirety did that a few days ago and some place you said you were born in the 80s . that is when I found out I have HIV

If you are weak of mental fortitude then do not read any further your self because some of us; me in particular may come across as not all there but that is cause  I am not all there and do not intend to be all there any time soon.

I recall watching its my party in 1996 I could seriously relate to the subject matter Google it if you never saw it. when I had AIDS with all the glory that entails
I was thinking what a loser I was for not doing my self in and avoiding that mess I was in. The movie was about dying with dignity before AIDS took that away

Now you tell a story about  dying with AIDS and  going out like a rock star with a year of a great party. great pipe dream but not a reality. I could go into the details I lived through but do not want to hijack your thread and bum everyone out. there are others here who have similar stories to tell.

you have an appointment to see about meds they are easy to take now and I hope you take them and have a great long life.

all my best to you



 

[anniebc]

You said you weren't young! You are a mere baby!

You have your whole life ahead of you still.

For goodness sake, get on HIV treatment TAKE CONTROL and then work with whoever you need to in order to get in a better mental place. 

Hi ivy

I turn 69 in a few months and have just been told I have become resistant to my last line of defense, but I'm not giving up, I still have a few things my ID Doc and I are sorting out, even if it means going out of the country to find something (I live in NZ) because I still have way to many thing to see and do despite my aging years.

I have never suffered from depression or any mental issues but I know many who have, and I have nursed many for them over the years, it's not an easy illness to over come, but please do try and get the help you need, life really is worth living if you give it a try, and really work on getting rid of your past demons.

Wishing you the best, and keep the guys here in the loop they will look after you.

Hugs
Jan

[poison_ivy]

Hello all

Thank you for your messages I am going to give the drugs a go it's just very tiring at times.
Thank you for your support.

Ivy

[Ptrk3]

Good decision!  You will be fine.

Please keep us informed of your progress and continue to come to these forums for support, guidance, and encouragement.

[leatherman]

it's just very tiring at times.

now that's a mindset you need to work on changing. Taking pills is NOT tiring at all. While I'll grant you that sorting out a regimen of multiple pills into a weekly pill-box can be a mind-numbing boring 10 minutes of your life, taking pills takes all of 1 second to swallow. Don't give HIV power over you, and don't make taking meds something overwhelming when it's not.

If we were back in the days of taking AZT every 4 hours (day and night) or taking half a dozen meds (liquid and pills) at all times of the day and night, with restrictions about how long before or after food, then you might be able to honestly say it's tiring. (I can tell you from experience, it was more than just "tiring", it was a nightmare just trying to stay alive). Nowadays we have multiple regimens of single-dose pills, or regimens with 2 or 3 pills, which are incredibly easy to take, with little to no side effects.

As someone who has been taking antiretrovirals for 25 yrs, I can say that taking HIV meds these days couldn't be any easier (at least until they refine the longer-acting meds/injections that they are working on now )

[Jim Allen]

Yeah.

Keep us posted on what treatment you are getting and how you get on.

I agree with leatherman post on the pill burden. I take 1 pill a day for HIV its the least of my concerns, it takes 1 sec of my time and the lowest pill burden I have out of my medical conditions.

Jim