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Author Topic: stopping my meds  (Read 1287 times)

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Offline ms3053

  • Member
  • Posts: 13
stopping my meds
« on: April 10, 2014, 10:27:10 AM »
I am a 28 year old man, and I have decided to stop taking my meds, i am also being treated for exposure to TB, and I have stopped those as well.. Today will be day 7 without meds.

I was wondering, what the timeline on life would be? This is a choice I have MADE for myself. I don't want people to tell me to take them, I've heard it all. Please take them for me, and its not for you, they are for me, and it is MY CHOICE.

I don't want to live the way I am living anymore. I am not happy. I do not leave my house. I want to be out of this world, but I also don't want to kill myself.

I got this virus on my own, and I want out.

What is the timeline here?

Offline ms3053

  • Member
  • Posts: 13
Re: stopping my meds
« Reply #1 on: April 10, 2014, 10:33:24 AM »
My CD 4 count was in the low 500s last month and I was undetectable.

Offline mikeyb39

  • Member
  • Posts: 923
Re: stopping my meds
« Reply #2 on: April 10, 2014, 10:37:12 AM »
You don't want to go out that way.  It would be a horrible painful ordeal. I think you should at least talk to a counselor before making such a decision

11/02/2010  cd4-251, vl-591000
12/09/2010  started Atripla
02/18/2011  cd4-425, vl-800
06/10/2011  cd4-447, vl-70
10/10/2011  cd4-666, vl-80
01/05/2012  swiched med (prezista,norvir ,isentress, )
02/10/2012  cd4-733, vl-UD  Viread removed
06/10/2012  cd4-614, vl-UD
12/14/2012  cd4-764, vl-UD
09/01/2013  cd4-785, vl-UD
03/06/2014. cd4- 1078, VL-UD

Offline drewm

  • Member
  • Posts: 1,084
  • I have a sling and a dungeon :-P
Re: stopping my meds
« Reply #3 on: April 10, 2014, 10:51:07 AM »
"Going out" on AIDS is horrible. That being said, you are the only one who can make the decision about whether to take meds or not. No preaching from me, however, you might want to at least talk with a counselor before you sign your own death warrant.
Diagnosed in  May of 2010 with teh AIDS.

PCP Pneumonia . CD4 8 . VL 500,000

ATRIPLA - VALTREX -  FLUOXETINE - FENOFIBRATE


Numbers consistent since 12/2010 - VL has remained undetectable and CD4 is anywhere from 275-325

Offline ms3053

  • Member
  • Posts: 13
Can anyone force you
« Reply #4 on: April 10, 2014, 11:20:34 AM »
Could the doctors or state of NY force you against your
will to take your hiv meds?

Offline GoForIt

  • Member
  • Posts: 94
Re: Can anyone force you
« Reply #5 on: April 10, 2014, 11:43:19 AM »
What meds are you currently prescribed that you are so against taking"?

My meds gave me all my energy back and made me feel a heck of a lot better. 

Wondering why you would not want meds?
08/09/2013   Diagnosed WB positive
08/20/2013   CD4-506(28%)  VL-10,800
09/12/2013   CD4-391(28%)  VL-14,900
09/17/2013   Start ART (Truvada & Tivicay)
10/11/2013   CD4-377(26%)  VL-UD
12/20/2013   CD4-590(??%)  VL-UD
03/18/2014   CD4-660(29%)  VL-UD
07/22/2014   CD4-613(29%)  VL-UD
08/01/2014    Start TAF Clinical Trial

Offline Buckmark

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  • Would you like to tie me up with your ties, Ty?
    • Henry's Home Page
Re: stopping my meds
« Reply #6 on: April 10, 2014, 12:07:09 PM »
I am a 28 year old man, and I have decided to stop taking my meds, i am also being treated for exposure to TB, and I have stopped those as well.. Today will be day 7 without meds.

I was wondering, what the timeline on life would be? This is a choice I have MADE for myself. I don't want people to tell me to take them, I've heard it all. Please take them for me, and its not for you, they are for me, and it is MY CHOICE.

I don't want to live the way I am living anymore. I am not happy. I do not leave my house. I want to be out of this world, but I also don't want to kill myself.

I got this virus on my own, and I want out.

What is the timeline here?

There's really no way to predict how long an HIV+ person will live without medications.  It depends on factors of physiology and genetics which science still doesn't really understand.  So it is basically a crap shoot. 

As others have said, this is not a way you want to leave this world -- sooner or later, it's extremely unpleasant.  But then you also say you don't want to kill yourself.  But then you say you want want to be out of this world.  Your words are in conflict, and your actions are in conflict with your words.

So, you need to focus on what your problems really are.  It doesn't sound like it is the medications themselves (e.g. side-effects).  What do you mean when you say you don't want to live the way you are living any more?  Why don't you leave the house?  Can you get some help from friends or a professional (e.g. counselor or therapist) to help you try to answer these questions?

FYI, I agree that that you should be taking your meds for yourself, not because someone else wants you to.  Personally, I hate when other people hound me to take meds, or go to the doctor.  Why isn't it enough for you to take them because you want and need them?

Regards,

Henry

"Life in Lubbock, Texas, taught me two things:
     One is that God loves you and you're going to burn in hell.
     The other is that sex is the most awful, filthy thing on earth and you should save it for someone you love."
- Butch Hancock, Musician, The Flatlanders

Offline thunter34

  • Member
  • Posts: 7,311
  • His name is Carl.
Re: stopping my meds
« Reply #7 on: April 10, 2014, 12:47:49 PM »
I want to be out of this world, but I also don't want to kill myself.

I'm not stepping on your choice, but I will say this:

Doll it up however you want, but if you refuse life-saving treatment that is right there at the ready for you, then you are killing yourself.

I'll also say this:

It's up to you, but I've been dealing with this stuff for about 10 years now.  I've had the itching, twitching, aching, flaking and shaking.  I've had the weight up, the weight down.  I've had the food up and the food down, for that matter.  I've swallowed more tablets than I ever expected to (outside of a dance floor), and I've been scared a few times.  But I've also...

Taken trips across the country, made new friends, reunited with old ones, celebrated birthdays, taken new jobs, learned new skills, found new hobbies, seen some great sunrises and sunsets, and all sorts of good stuff.

That's all I'm saying.  The choice is yours, but there's a lot of life left to be lived.  Good life.

You say you don't want to kill yourself, and you also say you don't want to live the way you are living anymore.

I think therein lies the real key.

But in any case...it won't come immediately, and you've got the time and our attention, so why don't you tell us more about your situation?

I can guarantee you that, whatever it is, someone (most likely man someones) here have shared something similar.

(For the record:  I personally spent a couple of years - years - pretty much flat on my back with depression and sick with this as well, so I know what it is to never leave the house.)
AIDS isn't for sissies.

Offline wolfter

  • Member
  • Posts: 4,460
Re: stopping my meds
« Reply #8 on: April 10, 2014, 12:49:32 PM »
Nobody can give you a timeline.  I saw many who died pretty quickly and other who lived over a decade. 

I suggest you look inward and focus on the underlying issues.  This entire post reads as if I could have written it a short few years ago.  I'd equate stopping meds to a form of sanctioned suicide.

I won't repeat my entire personal experience, but I made the same decision that you have.  I was ok with being dead and didn't see a need to be on this earth any longer.  Religious considerations played a huge role in not being able to end my life quickly by other means. 

The process of dying from AIDS isn't usually a quick process and I unfortunately learned the hard way.  If you're fortunate, you'll only suffer horrid pain for a few months, pleading for death to hurry up.

Or you could make the decision that life really is worth living and deal with all the issues that made this decision seem viable and acceptable.  I sincerely hope you reconsider before it's too late.

wolfie
Complacency is the enemy.  ;)  Challenge yourself daily for maximum  return on investment.

Offline TabooPrincess

  • Member
  • Posts: 279
Re: stopping my meds
« Reply #9 on: April 10, 2014, 02:57:40 PM »
How long have you been positive?  Is there any chance you've got some kind of post-traumatic stress thing going on.  Or any chance you were on atripla as that shit made me feel like giving up too.
09/ 2008 - Seroconversion
11/2008 - Tested pos, cd4 640 vl 25400
12/2008 - cd4 794 vl 27798, 35%
03/2009 - cd4 844 vl 68846, 35%
06/2009 - cd4 476 vl 49151, 33% (pregnancy confirmed)
08/2009 - cd4 464 vl 54662, 32%
Started meds for pregnancy (Kaletra, AZT, Viread)
09/2009 - cd4 841 vl 3213, 42%
10/2009 - cd4 860 vl 1088, 41%
11/2009 - cd4 771 vl 563, 38%
12/2009 - cd4 885 vl 151 42%
Discontinued meds after baby born
02/2010 - cd4 841 vl 63781, 38%
05/2010 - cd4 1080 vl 113000, 39%
08/2010 - cd4 770 vl 109242
12/2010 - cd4 642 vl 111000, 34%
06/2011 - cd4 450 vl 222000, 33%
11/2011 - cd4 419 vl 212000, 24%
03/2012 - cd4 280 vl 118000, 26% (repeated Cd4 at 360)
05/2012 -cd4 360 vl 99,190
10/2012 Atripla, cd4 690, vl 80
12/2012 Darunavir, norvir, truvada, Cd4 680, vl u/d
07/2013 cd4 750,ud

Offline zach

  • Member
  • Posts: 1,388
  • not fade away
Re: stopping my meds
« Reply #10 on: April 10, 2014, 03:40:22 PM »
your cd4s are above 500 your VL is UD, and in january, during your last round of posting, you sounded confident of living into your 80s

you know what is causing your diarrhea, its not HIV, its not the meds, its the cryptosporidium. it is treatable.

you want to live. you just have to fight for it. step outside. it is beautiful out there. fresh green, cherry, dogwood, redtips, are all blooming, birds are building nests

find the will, you are not dying

Offline Joe K

  • Global Moderator
  • Member
  • Posts: 3,621
  • 31 Years Poz
Re: stopping my meds
« Reply #11 on: April 10, 2014, 04:04:18 PM »
As someone who has lived with HIV, for longer than you have been alive, I will never understand your choice to stop your meds and that choice makes be believe that the meds are not the real issue here.  Just from the little you shared, I believe your true issue is that you are depressed and you cannot see it happening.  I say this as someone who has battled mental illness for my entire life.

You are too young to be so morose and your health is not being challenged, as you are being treated for your health problems, or at least you "were" being treated.  I will not try and talk you out of stopping treatment, because I do not think even you believe this a reasonable option.  All I would ask is that you talk with a mental health professional and share with them, what you have shared here.

I cannot stress enough, that if you are suffering from some type of mental illness, your thought process is not operating correctly and it skews how you view yourself and reality.  Talking with someone may not change your decision, however it may reveal other options that you have not considered.

This is not a decision to be made lightly.  Please talk with someone about your feelings and see where you go from there.

Best of luck.

Joe

Offline mecch

  • Member
  • Posts: 11,500
  • red pill? or blue pill?
Re: stopping my meds
« Reply #12 on: April 10, 2014, 04:11:48 PM »
ms3053 - ever been with someone who dies of HIV-related diseases in AIDS. Its hideous. Its painful for the person dying. Its very heavy for those around them. 
And you, so young!
Are you planning to die alone? You know, once you start getting really sick, if anyone who cares about you sees you, they will take you to the hospital. 
Eventually, I assume you will be able to convince the medical staff not to treat you. You may be able to get palliative care and ideally die in a facility or with home care that could manage your pain.  Its shockingly painful, usually.  Also, its expensive. 

What you are doing is suicide, I agree with the others.

Therefore, if thats what you want, I wonder if there are better ways to kill oneself? Faster and less painful?

Why do you want to die?

You posted this in a sort of aggressive, provocative way. Why announce to us in the forum that you are determined to die, and furthermore tell everyone there is nothing to discuss.    Do you really think your choice is something that people in the forum are going to cheer? Or say nothing about?

I agree with Joe.  What you are saying if from a mind that isn't making much sense. 
« Last Edit: April 10, 2014, 04:17:01 PM by mecch »
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline Bizkits

  • Member
  • Posts: 105
Re: stopping my meds
« Reply #13 on: April 10, 2014, 04:25:52 PM »
Just curious, if I may ask. It also seems as there are several others who are curious and also concerned...I am a newbie, getting ready to start my meds in a few days. I have had a lot of anxiety leading up to this point and I'm really glad it's just around the corner. A lot of my thoughts lately have been about how I'm going to tolerate meds or changes in my life because of meds and hiv...

Somehow, though, I'm getting the impression hiv and you also mentioned tb exposure are not the sole of your unhappiness, rather something you have that can metophorically be your suicidal weapon.

Can we ask what is really going on?

And I don't know about New York, but here unless you've committed a crime or are downright committed, the state cannot force you to do anything. 

Offline Jeff G

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  • Member
  • Posts: 11,382
  • How am I doing Beren ?
Re: stopping my meds
« Reply #14 on: April 10, 2014, 04:44:24 PM »
I agree that depression and other factors are responsible for wanting to give up .

MS ... I once felt like my only option left was to stop my meds and fade away . I was depressed and things in my life were happening that I couldn't seem to control or manage . I was desperate to regain a sense of control over my life and the one thing I had left was to choose to live or die ... or that's what my depressed brain told me was my only choice but it was not true  . 

I went from undetectable and physically healthy to having my body riddled with Kaposi sarcoma cancers within 8 months . I was in so much emotional and physical pain I eventually relented and sought treatment although my heart still was not in it . I eventually recovered but still suffer complications from my decision to have a drug holiday .

Please come back and share with us why you are feeling this way ? Help us understand what brought you to this decision so we can talk it out . If you are willing to share this with us it will be a good place to begin to make a plan to get better and back on track . It can also help others that are feeling the same way you are ... I guarantee you that you are not alone in feeling this way .

Bets of luck and please do not give up .     

Offline buginme2

  • Member
  • Posts: 2,841
Re: stopping my meds
« Reply #15 on: April 10, 2014, 04:45:57 PM »
I don't see it mentioned anywhere so I'll ask.....


WHY DID YOU STOP TAKING YOUR MEDS?

Offline bocker3

  • Member
  • Posts: 3,374
  • You gotta enjoy life......
Re: stopping my meds
« Reply #16 on: April 10, 2014, 05:20:03 PM »
The fact that you posted this thread says to me that, despite your words, you DO want someone to help you.  If you were comfortable with this decision, you would not have announced it.  I am, though, very glad that you did.  You're asking for help in the only way you can right now.  Use us to talk through what is going on -- a professional would be better, but we can provide you with support and experience.
Talk to us for now -- consider a counselor.  As others have pointed out -- dying this way is about as unpleasant a way to go that exists.

I do not believe that you really want to end it - use us to help!!

Mike
Atripla - Started 12/05
Reyataz/Norvir - Added 6/06
Labs - Pre-Meds
Sep05 T=350/25% VL98,559
Nov05 288/18%  47,564
Current Labs
May2013 691/31% <20

Offline eric48

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  • Posts: 1,171
  • @HIVPharmaCure & tinyurl.com/HIVPharmaCure
Re: stopping my meds
« Reply #17 on: April 11, 2014, 10:07:59 AM »
you VL at start of meds was somewhat on the high side

you wrote

My cd4 was 518 and my load was 800,000 as of 09/23/2013
Your last CD4 (undermeds) was in the 500 '

60 % of people stopping meds in similar conditions did not have to resume meds for a duration of 2 years. the other 40 % had to restart in order to maintain CD4 > 350. No additional cardiologic risk (heart attack)

People with an initial CD4 of 500 and not under medication will have a 90% chance of remaining AIDS free and Alive (death free, so to speak) over the next 5 years

So it is most likely going to take a while...

So, statically, you  have plenty of time. But, of course, there is no way to be sure...

 BTW, you should not have stopped $tribuild 'cold turkey' : you should have followed the $tribuild stop procedure... But it is too late, and you have plenty of other options

Does that answer you question on the timeline ?

Answering questions as they are being asked usually helps

Eric
NVP/ABC/3TC/... UD; CD4 > 1000; CD4/CD8 ~ 2.0   safety stock : 2 months

Offline eric48

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  • @HIVPharmaCure & tinyurl.com/HIVPharmaCure
Re: stopping my meds
« Reply #18 on: April 11, 2014, 10:39:22 AM »
i am also being treated for exposure to TB, and I have stopped those as well..

Bad choice

TB will get you to Hospital and YES they will force drugs on you (at least they seem to do that in some of the states)

mobile.eric
NVP/ABC/3TC/... UD; CD4 > 1000; CD4/CD8 ~ 2.0   safety stock : 2 months

Offline mecch

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  • red pill? or blue pill?
Re: stopping my meds
« Reply #19 on: April 11, 2014, 11:19:34 AM »
Answering questions as they are being asked usually helps

I dunno.  I agree its good to answer the questions.  But the remark above, it sounds to me a little snarky to the rest of us who took the time to react to stated motivation. The OP is stopping meds because he wants to die
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline thunter34

  • Member
  • Posts: 7,311
  • His name is Carl.
Re: stopping my meds
« Reply #20 on: April 11, 2014, 08:45:15 PM »
I dunno.  I agree its good to answer the questions.  But the remark above, it sounds to me a little snarky to the rest of us who took the time to react to stated motivation. The OP is stopping meds because he wants to die.

Yeah....I'm a little iffy on the intent you had there, Eric.  I mean answering the questions as they asked is a fine thing - and those statistics are nifty - but ultimately, they remind me of those old "what chance do I have of infection from this or that?" stats people used to try to call up all the time.

"Oh...1 in such and such if you are a top and 1 in such and such if you are a bottom" etc.

Either your number comes up or it doesn't.  You can try to negotiate calculated risk, but it's still a roulette.
So it all sounds lovely but is ultimately meaningless.

Likewise, a timeline for croaking by self-induced, passive suicide by way of AIDS.

There simply is no predictable timeline for this sort of death.

But there certainly is a style.
AIDS isn't for sissies.

 


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