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Author Topic: Not taking HIV meds and making a hard decision to do so....anyone wants to share  (Read 16440 times)

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Offline hawaiianbl@yahoo.com

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I just decided not take my HIV meds can anyone share some insight?

Offline leatherman

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eventually the HIV will win and sadly you'll die. :'(
That's the blunt truth of what happens with untreated HIV.

Also if you've been on meds, and just up and quit them, you're running the risk of resistance developing (the virus learning to deal with the meds when the level of meds dropped low enough) so that you might not be able to go back to your current meds. Do this enough times, and there'll be no meds to help you in the future.

Perhaps you might want to explain WHY you stopped your meds? If your reason was side effects, you'd be much better off talking to your doctor and trying a different regimen since there are so many options available nowadays. IMHO, Just giving up without trying to do anything proactive first would be awfully lazy and cowardly since at one time you already made the decision to go onto meds and live.
leatherman (aka mIkIE)

So we put our hands up like the ceiling canít hold us
"Can't Hold Us" - Macklemore & Ryan Lewis

chart from 1992-2015 Reyataz/Norvir/Truvada

Offline jkinatl2

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Welcome to the forums!

It would be great to know more about you than just that piece of information.

Have you been on meds before? Is it a side-effects issue? A cost issue?

How long have you been positive?

You've actually seen, up close, AIDS and it's implications, yes?

Please help give a little perspective.

"Many people, especially in the gay community, turn to oral sex as a safer alternative in the age of AIDS. And with HIV rates rising, people need to remember that oral sex is safer sex. It's a reasonable alternative."

-Kimberly Page-Shafer, PhD, MPH

Welcome Thread

Offline hawaiianbl@yahoo.com

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i have been positive since 1996 side affects had put me in the hospital for 3months.

Offline jkinatl2

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I am very sorry you have had bad experiences with side effects. Many of us who have been positive for a long time have seen many new drugs emerge, and suffered from side effects that have been physically and spiritually debilitating.

I have been positive since 1993, and have been on just about everything from AZT monotherapy to First Generation PIs and the like.

I'm now on Truvada, Prezista, Norvir and Isentress - and can fo the first time say that I have had few if any real side effects with this combo. And please believe me, I've become VERY leery of meds thanks to my history.

If/when I miss a dose, it's purely on me, not because of any side effects that cause.

Have you discussed combinations with your doctor? Even a lot of "older" drugs (like Viracept) have been reformulated to avoid/prevent the dreadful side effects associated with the original versions.

I just hate to think there's absolutely nothing you can take that won't be more dreadful than the slow decline of AIDS. I say this because I've been there - and dragged my family and friends there - because I stopped trying, stopped looking, stopped hoping.

You certainly have enough experience with the pandemic to make an informed decision. I just hope it's that, an informed one.

Much love
Jonathan
"Many people, especially in the gay community, turn to oral sex as a safer alternative in the age of AIDS. And with HIV rates rising, people need to remember that oral sex is safer sex. It's a reasonable alternative."

-Kimberly Page-Shafer, PhD, MPH

Welcome Thread

Offline jkinatl2

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PS: You might want to ask a moderator to help you choose a screen name that isn't your real mailing address, if that's indeed what I am seeing. These forums are searchable, and I cringe at the vulnerability to unwanted intrusions.
"Many people, especially in the gay community, turn to oral sex as a safer alternative in the age of AIDS. And with HIV rates rising, people need to remember that oral sex is safer sex. It's a reasonable alternative."

-Kimberly Page-Shafer, PhD, MPH

Welcome Thread

Offline Theyer

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Welcome.

If you have made this decision then hopefully you have done it with your Doctors so good and appropriate end off life care will be made available to you.

Will such scant, though powerfull information to go on that is the only usefull thing I can think off.

I have experience off prolonged illness with aggressive medical intervention , in certain circumstances I believe its a valid decision .

 Dia. 1996 and 3 months hospitalization due to side effects  is not enough information for me to enter into a dialogue with you.If you gives us all more info then you will receive further input from us.
Take care
theyer
mhtv
"If we can find the money to kill people, we can find the money to help people ."  Tony Benn

Offline weasel

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I just decided not take my HIV meds can anyone share some insight?

    Are you DEPRESSED ?   WTF !

  I have had HIV  for over half my life !   I will be 58 next August .

   I feel like CRAP  most days , But the way I see it  Feeling like crap is LIVING ! 

   Why would you choose to die when so many of us are fighting for our lives .   

 Dead is Dead  ....................

   I really think you need to SPELL  OUT WHAT IS UP !   

  I am sure Most of us will  listen and give advice !   At that point you MAY decide  maybe life is worth living !

   Your post is just short of saying   " I am going to KILL myself  , Just thought you should know !  "

   REALLY ?   

   When I wake up I thank GOD for another day !   Maybe it will be crappy maybe it will be  a normal day  :)

    More often than not I feel like a corpse !  But i would rather be a Warm Corpse than the other  :-[

    Please POST more info !   

 Feel free to message me , I will offer whatever I can in mental support , For  HIV issues .

  Does your I.D. Doctor know you are  about to do this !!!!!!!

                                                       wishing you the best ,
                                                                                 Weasel

 P.S.   Life can be a awful but I will make the best of it  :-*
" Live and let Live "

Offline denb45

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I've been on HIV/AIDS meds for almost 25yrs. when they 1st came out AZT was the 1st of the meds, and I've had just about every side-effect the you can shake-a-stick-at  ::)

 I still take my meds almost 25yrs later, cuz I know they keep me alive, and being alive is way better than being DEAD..... :)

I've seen 1st hand what happens when people don't take
these meds to keep them healthy & alive  :'(

 I've seen it. and I've witnessed it, and I can tell you, that it's  really a horrible way to go... :(

I hope that you can somehow comes to terms about this, and get some help with all of the side-effects

it aint really all that bad, it hasn't been easy for me all these yrs. and I feel & look like crap, but, I'd rather be alive than to be DEAD   :)
"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

Offline Theyer

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I've been on HIV/AIDS meds for almost 25yrs. when they 1st came out AZT was the 1st of the meds, and I've had just about every side-effect the you can shake-a-stick-at  ::)

 I still take my meds almost 25yrs later, cuz I know they keep me alive, and being alive is way better than being DEAD..... :)

I've seen 1st hand what happens when people don't take
these meds to keep them healthy & alive  :'(

 I've seen it. and I've witnessed it, and I can tell you, that it's  really a horrible way to go... :(

I hope that you can somehow comes to terms about this, and get some help with all of the side-effects

it aint really all that bad, it hasn't been easy for me all these yrs. and I feel & look like crap, but, I'd rather be alive than to be DEAD   :)

Ditto
"If we can find the money to kill people, we can find the money to help people ."  Tony Benn

Offline wolfter

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You've already rec'd some great words of support and I'll add a few more.  It sounds like there are underlying issues that need addressed.  I made this same idiotic decision a while back because of underlying depression that I had never had an issue with before.  Life's circumstance caused it for me.  Looking back, I obviously didn't think it through very clearly.

The thought of being dead doesn't bother me, but the thought of dying from AIDS terrifies me.  I looked into the dying eyes of too many loved ones and saw the agonizing pain they endured.

Welcome to the forums and continue to reach out.  There's great support in numbers, and we'll assist in any way we can.

Take care and best wishes.
Wolfie
Being honest is not wronging others, continuing the dishonesty is.

Offline harleymc

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Hi I'm somewhat in the same mindspace as wolfter that AIDS is not a good way to go.
I stopped my medications for a long time, when other non-HIV related issues were making my quality of life pretty miserable. Death per se doesn't scare me. After i saw the impact of my decisions on family and loved ones (even for the most supportive people multiple KS lesions trigger strong emotional responses) I returned to the doctor's fold again. My doctor gently reminded me that AIDS is a really sh!tty way to die.
I've surrounded myself with a bit more support this time around, some counselling, a buddy from a volunteer organisation and have joined a poz community organisation. The health and social issues that drove me away from fighting HIV have not entirely resolved but with support they seem a lot less devastating.
Whatever it is that's driving you away from the will to live, please get some support to address those root issues.
My best wishes to you

Offline hudstar

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i took a year off from my pills just to have a break from pill popping. I was monitored and my viral load did creep up so for myself i wanted to see how far I could push living without thought or evidence of my HIV status - it stayed with me :)  I have resistence to most HAART drugs and found that out during a DNA trial  - I was the 65th person for a 64 person only trial so go figure the odds for that fluke. HIV was and still is a progressive condition that if left untreated will only get worse. You need to take meds to stay alive. I compliment my drugs with natural remedies that do not alter how my medication works. Women's 50+ Swisse multi-vitamins give you a boost and of course fish oil and assorted husks. Maybe speak to your doctor about complimentary therapies to combine with your HIV meds.
diagnosed 1988
POZ personals - hudster

Offline Andrea

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It is distressing to hear of your thoughts and I can understand where you are coming from as I have been there and continue to do so with very dark thoughts in my mind and just wanting it to end. It is paralyzing and isolating from everyone and everything around you and it is damn lonely.
I fight with what you describe at black moments in time but as the other guys have said you or I would die very quickly and from some awful condition brought on by AIDS. I have to think of my partner and it stops me but you may not have this and this is where friends come into it - and it is very important you have true, real and understanding friends as you will find here.
Please, write some more as I very much want to hear your thoughts and decisions, we all do as we are concerned and can understand as you can count on us for as much support, understanding and help as you want. So don't stop anything just yet OK, talk to us at least a bit more and we can hold your hand along this rocky road as you are not alone in any decision you make now.
Big hugs to you pal and hope you read this and respond because I want you to xxx
~ Andrea
30 years +
CD4: 1007
VL: Undetectable
LFT: Normal.

Offline 69freespirit69

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I did the same thing 6 months ago, seems my depression and isolation got the best of me. However I am back on my meds, and trying to live my life with some new skills from MBCT, Mindfulness Based Cognitive Therapy. Changing the thoughts that run through my head as best I can, trying to find times of not thinking at all. Its not an easy life, this HIV and all that comes with it, I myself have moved back to where I grew up , only to be more isolated and with hardly a support system , in all of the 25 years i have been dealing with this . Friends are difficult to make or keep so it seems up here in New England. Hope is all we have that things will get better, whatever that means, best regards. michael

Offline Theyer

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Hello 69, it would be good to hear where you are with life at the moment , have you made any changes?

I hope day to day life is better for you, either way let us know.

Best wishes to you

michael
"If we can find the money to kill people, we can find the money to help people ."  Tony Benn

Offline flaconvert

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Fact is if you don't take meds you will get sick and die. Might be sooner. Might be later.

i hope you can find the strength and support to resume your medications. i encourage you to get involved in life today.  i hope you will find happiness and peace. And  i respect your decision, whatever it may be. Just remember: the longer you are off meds the more difficult it will be to regain your health.

i too have stopped taking my meds almost two years ago. Yes i am depressed. Poz since Jan 89. Became a nurse to help others with AIDS. i lived in San Francisco during 1990's.  Have seen lots of death. Too much. Recently, i thought i could go to my local ASO and get help but something inside of me will not let me go. i am tired, i have fought long and hard and now want to sleep. i do not advocate this decision for anyone. But it is my right to live my life in the way i see fit and i fully understand the consequences.

i am glad others are fighting for every day of life. Hopefully they will be here for the Cure.  Please remember your  life is precious. Do not make your decision lightly because your actions will have lasting implications for everyone around you.

You will be in my thoughts today and i wish you well.   


Offline deibster

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Just ONE word of advice. A healthy friend had a Physician's Assistant take him off of all his meds. He got a herpes infection in his eye. SO, if you are on a herpes med, you might want to stay on this one med. I don't think an MD would have made this mistake. Hugs, deiby
Poz since Dec 1992. Meds since 1995. Disability since 2005. Constantly fighting the Lipodystrophy 'beer gut.'

Prezista/Norvir, Epzicom, Cytomel, Prevacid, Coumadin, pravastatin, Fenofibrate, Remeron, Zoloft, Concerta, Flomax, Allegra180, Nasacort, Centrum, Flax Oil, Fish Oil

Offline leatherman

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i too have stopped taking my meds almost two years ago.
...
Please remember your  life is precious. Do not make your decision lightly because your actions will have lasting implications for everyone around you.

You will be in my thoughts today and i wish you well.
Physican heal thyself  :-* please take your own advice.

have you ever gotten sick, you know, been all aidsy?? If you haven't yet, then please take your own advice and get help to get back on the meds.

I was just talking today to a friend I haven't seen in yrs, talking about the 3 times a doctor told me to call my family to come to my bedside because I was more than likely going to die. Boy howdy, do I remember how utterly shitty and horrible I felt that sick and that close to death.

That's what happens at an AIDS-death. While taking meds, while doesn't solve every problem by a long shot, it sure prevents being in that kind of predicament. you should do everything you can to avoid that. See a therapist, see a doctor, see an ASO, whatever it takes.  :-*

I'll be keeping you in my thoughts.  ;)
leatherman (aka mIkIE)

So we put our hands up like the ceiling canít hold us
"Can't Hold Us" - Macklemore & Ryan Lewis

chart from 1992-2015 Reyataz/Norvir/Truvada

Offline amaphot

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I don't normally weigh in on topics and I can only reflect based on my personal experience.  First off, I have been HIV+ since 1988 and like many others who have posted, I have seen the evolution of treatment and progress in the fight against HIV and how it continues to shape our lives
.
What sometimes complicates the issue are losses of those closest to you.  The people closest to me in the early years are sadly no longer with me due to not being able to survive long enough to benefit from the advances in medication.  That HIV is now considered a chronic but manageable illness is something that also shapes the "survivor" attitude.

One of the issues that sometimes plagues me is "survivor's guilt".  As we move into the present and future of longivitity, I'm reminded that a large part of my emotional life was wiped out.  Sometimes, wanting to continue to take meds may also have to do with quality of life from the emotional rather than the physical aspect.  If I had to hazard a guess about why someone might choose to stop medications, I would question that they might feel emotionally empty and this is complicating matters.

Everything I have read in this topic resonates and I only hope that the individuals in question can find some support here as they figure things out. 

Let's hope the outcome is favorable.

Offline hudstar

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  • 2010
That HIV is now considered a chronic but manageable illness is something that also shapes the "survivor" attitude.

One of the issues that sometimes plagues me is "survivor's guilt".  As we move into the present and future of longivitity, I'm reminded that a large part of my emotional life was wiped out.  Sometimes, wanting to continue to take meds may also have to do with quality of life from the emotional rather than the physical aspect.  If I had to hazard a guess about why someone might choose to stop medications, I would question that they might feel emotionally empty and this is complicating matters.

Everything I have read in this topic resonates and I only hope that the individuals in question can find some support here as they figure things out. 

Let's hope the outcome is favorable.
Its funny you mention survivors guilt. I have recently joined my first LTS group and this very issue came up. I always had an issue with that phrase, I preferred to use survivors anger as it was anger that drove me to move ahead. The first anger was being told I was going to die so young then the anger of living longer in a limbo realit because we were never actually told officially things were going to change for us- we kind of worked that out for ourselves when HAART came in to being. It was the long state of living in hope without any official recognition that we existed in until we reached this stage today - the stage that comes after hope and that is life. Many of us were ill prepared for that. This reality may be too confronting for some - I know I stopped my meds not because I wanted to end it all but because i wanted to feel HIV free for a while. I think we have all pondered the power we have over ourselves when we decide to take or not to take pills. I really think to stop taking pills this far down the line is a cry for help and if you do question not taking pills please speak to somebody. We are making our own history here and everyone of us is incredibly important
diagnosed 1988
POZ personals - hudster

Offline dominicjoel

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Hey

I've been to the same place. 

I'm staring at a new box of meds right now which I've just collected - I threw the last lot away - and deciding whether to start taking them again, or not: Truvada and  Viramune.  Been positive for about 12 years or so - does that make me an LTS?! - and on meds for 4. What a crappy four years they've been.    Some people on here talk about life. Any kind of life. But I have to ask: what about quality of life?

Have to say, haven't had really bad physical side-effects, just some dramatic weight loss, but since I've started meds I've endured the mother and father of all depressions.  I've tried the drugs for that, the counselling, the exercise etc., and it doesn't work.  It just doesn't.  As I sit and write this, I exist in a kind of fog, almost completely disconnected from the world. I get up, go to work, do stuff, but none of it seems to register. 20/30 more years of this? No way! 

Is it the drugs, or just the fact that I'm gonna have to spend the rest of my life on drugs?  I don't know, but what I do know is that whatever it is, it can't go on indefinitely like this.  Stopping meds in a moment of what seemed like clarity looked like a way out, but I guess I'm a big coward!

So, I'm looking at them wondering what to do.... 

Offline Ann

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    • Num is sum qui mentiar tibi?
Hi Dominic, welcome to the forums.


 Been positive for about 12 years or so - does that make me an LTS?!


For the purpose of this particular sub-forum, no, you're not an LTS. From this section's Welcome Thread:



This forum is a safe place for long-term survivors (LTS), defined as people living with HIV who tested positive for the virus before the advent of highly active antiretroviral therapy (HAART) in 1996.


There's more written in the LTS Forum Welcome Thread, so please have a look.

Thank you for your cooperation.

Ann

Condoms are a girl's best friend

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"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline joyvibe

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I just wrote a thoughtful and thorough response to hawaiianbl re: quitting meds. I hit a key while in "preview" mode and lost it! Grrrr. Bottom line: I delayed starting meds, quit twice 2 years into the regimen, and I will never quit my meds again. I know now, contrary to what I used to believe 21 years ago, I cannot live without the meds. Talk to your doc first.

Offline joyvibe

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Ah, I found it on a previous tab! Thx.
I became hiv+ in 1991. I was told I had 4-5 years to live, and that only if I started taking AZT NOW. I refused AZT (it scared the crap out of me) and decided to "live without fear." Whew! That helped a lot.  I researched every alternative treatment on the planet--ardently searching for 3 years. I've tried many wacko things. I refused the "new medications" when they emerged in '96 I think it was because I believed that I could "overcome" AIDS and not "kill myself" with the meds. In '98 PCP got me and my body craved the meds--I wanted them. 2000: I quit meds, stayed very well with a CD4 counts 200-300. 2002: PCP or PJP or whatever it is now--got me again and I came very close to death. Meds for me! I was convinced I could not live without the medications. 2006: bad stomach, diarrhea, feeling horrible--me in my brave stupidity quit the meds just for 30 days to "detox my body." In 30 days I had an appt. with ID doc. Labs then revealed the truth--I have "a very aggressive strain of hiv" and my CD4 count, when I quit the meds was 700; 30 days later it was 91. That taught me a lesson!! ALWAYS consult the doc first before you quit your meds, then take or leave their advice. My CD4 count has been crawling back up since that time and I'm delighted that it recently surpassed 300. Wanta quit your meds? I won't ever again....

Offline lforsyth

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Anonymous testing wasn't available until 1986, of course I was positive. I wasn't put on meds until after the viral load test was available in 1997. I was lucky that I responded within 6 months. Today I'm viral load undetectable and immune system normal. I don't take the full dosage, it's overkill. When I was on twice a day meds I took them only in the morning and waited for the side affects to kick in. I'm now on once a day meds and I take them every other day, Monday, Wednesday, Friday and give myself weekends off. Same results as before but I do have bad days and have to pay attention. I've had to go home to change clothes or just call it a day, but not often.

You have to judge for yourself as well as talk to your doctor. But it does depend on how much you want to live and enjoy life. That is what drives me to keep going.

Tested POZ in 1986, knew there was something wrong in 1985. 04/2010 CD4: 975 Viral Load undetectable. Prezista, Norvir, Truvada, Acyclovir, Plavix, Lisinopril, Metoprolol and a bedtime snack of Lipitor (YUM)

Offline Jeff G

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It may be overkill for you but its not for most people on HAART . As you pointed out , for you its a personal choice to discuss with your doctor but I have never in all my years ever had a doctor that recommended adjusting my HIV meds in this manner , in fact I have been warned not to do what you are doing . I hope it works out for you .     

Offline deibster

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Hello,
We should remember one thing. All adults in the USA are given the same dose of whichever medication they are taking - Epivir is one tablet/day, Viread one/day, Isentriss two per day.

In parts of Europe, the doc weighs you and prescribes the number of pills depending on your weight and on your liver & kidney function tests. A large person would be put on Epivir or Viread every day, but a small person might very well be put on it every other day.

A medium sized person's dose might depend on how well their liver or kidneys are doing. If these organs are fine, they may be on a pill everyday, but if the organs are having problems, they may be put on a dose every other day. Some docs in the USA are allowing patients to decrease their medications, similar to these guidelines used overseas.
Poz since Dec 1992. Meds since 1995. Disability since 2005. Constantly fighting the Lipodystrophy 'beer gut.'

Prezista/Norvir, Epzicom, Cytomel, Prevacid, Coumadin, pravastatin, Fenofibrate, Remeron, Zoloft, Concerta, Flomax, Allegra180, Nasacort, Centrum, Flax Oil, Fish Oil

Offline PozShaman

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Hello,

I can relate to you.  It is a personal choice not to take meds.  I too have decided to stop my meds after 15 years.  I am committed to my health, mediation, yoga, and spirituality.  I know for myself, this is the right choice.  It is the only thing that seems to make since in my life.  I am in control 100%.

Perhaps, I will feel differently when I get really sick, but for now it is right.  I am one that is connected daily with spirit.  I am connected more with spirit than anyone I have met in 41 years on earth.  The idea of reconnecting with spirit full-time seems like a dream worth connecting with.  The idea of prolonging my life with medication on this earth - well... this reality is depressing.  I am been to many therapist, and I haven't connected with one that can help me see otherwise. 

I am committed to live - lovingly, connected, and balanced and welcome death when it is my time. 

Do you feel the same?  Please connect with me.  I would love to meet others on similar paths.

 

Offline harleymc

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@ Pozshamen
Ask your emergency room medics for a bit of yoga and spirituality when you get there. I've head it's front line ER tratment for all sorts of life threatening incidents.

Offline leatherman

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You've replied to a thread that is several yrs old, so don't expect to many people to answer you (you might want to start your own thread) - especially when you're espousing such a bad plan for your health care. If you're committed to living and yet going to go off meds, then you don't understand the science and will be quite sick in the future, and then quite disconnected from your spirit when HIV finishes up with you.
leatherman (aka mIkIE)

So we put our hands up like the ceiling canít hold us
"Can't Hold Us" - Macklemore & Ryan Lewis

chart from 1992-2015 Reyataz/Norvir/Truvada

Offline Wade

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@ Pozshamen
Ask your emergency room medics for a bit of yoga and spirituality when you get there. I've head it's front line ER tratment for all sorts of life threatening incidents.
That pretty much sums it up.......
I'm late to this thread , a lot has been said.
All I can say is aids is a shitty , horrible way to die.
We are all LTS s here , we witnessed the horrors of the plague from the beginning.
I think all who went before us would have jumped a chance for life when there was no hope ,side affects and all.

We all have our own daily struggles , body changes , pain , brittle bones,depression,
Isolation and more ,
but we push on . We are Proud LTS s and will not give up.
I don't know what words of comfort you want or expect for stopping your Meds.
It would be hard for me to give you any.
"Who put the pepper in the....Vaseline  ? " Coffee Butler

Offline leatherman

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I'm late to this thread , a lot has been said.
don't feel bad; that's because this thread is 3 years old ;)

We are all LTS s here
we really don't know that about our newest member PozShaman (interesting choice of name there since we know that it's not magic but ARVs that stop HIV), who has joined us with a first post talking about how he wants to die (that is the consequence of untreated HIV). We really only know that PozS says that he has been on meds 15 yrs. That would be 2000 and unless he was diagnosed prior to 1996, PozS might not even be an LTS.
leatherman (aka mIkIE)

So we put our hands up like the ceiling canít hold us
"Can't Hold Us" - Macklemore & Ryan Lewis

chart from 1992-2015 Reyataz/Norvir/Truvada

Offline Duskeladus

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I stopped taking my meds in June last year. Its a year plus now. How safe am I?

Offline Jeff G

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  • How am I doing Beren ?
I stopped taking my meds in June last year. Its a year plus now. How safe am I?

It all depends on your cd4 count and viral load as to how well you do off meds . Unless a person is a non progressor they will eventually die of HIV if they do not get treatment with HAART . There are no exceptions .

Online Dachshund

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Hello,



 I am connected more with spirit than anyone I have met in 41 years on earth. 

Wow, just wow.

Offline aztecan

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  • 30 years positive, 58 years a pain in the butt
Pozshaman, I believe people who have some sort of spirituality do fare better, on average, than those who don't.
My spirituality is very important to me. That being said, the physical reality is that without meds, you will sicken. If you haven't seen it, I can assure you it isn't something to willingly choose.
I tested positive in 1985 - and I will be the first to say I would not have wished those dark days on anyone. That I have managed to survive the past 30-plus years with the virus can be attributed to dumb luck as much as anything else.
But another part of that is the unwillingness to give up. There are often times I am weary, and would like to just hang it up.
But, thanks in a large part to the people I know, including quite a few from this forum, I manage to find the will to continue and do what I must.
I would never ask you to give up your spiritual path, but I would ask you to reconsider abandoning your physical care. This also is a path you must tread.
You stated you feel more connected spiritually than to any person you have known.
If you could, try to connect with others, give it another go, so to speak, whether here or elsewhere. I believe those connections will also help guide you.

HUGS,

Mark

« Last Edit: August 05, 2015, 04:43:41 PM by aztecan »
"May your life preach more loudly than your lips."
~ William Ellery Channing (Unitarian Minister)

Offline aztecan

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  • 30 years positive, 58 years a pain in the butt
I stopped taking my meds in June last year. Its a year plus now. How safe am I?

As Jeff said, it depends in part on where you were when you stopped, and how fast the virus makes a comeback in your body.
In my experience with those who have ceased meds, they usually find themselves where the started as far as CD4s and viral loads, in anywhere from three to nine months. I have seen a few go a year before they hit those levels, but that is pretty rare.
One of the good reasons to stay on meds is to reduce the inflammation caused by the virus. This long-term inflammation is what is causing so many of us who are LTS to experience the early onset of age-related problems like heart and lung problems.
Another good reason to stay on meds is, once you are undetectable, the chance of you passing the virus along to someone else is very, very minimal. (Some people say impossible, but I won't go that far).
I would like to ask, why did you stop?
Were there problems such as side effects, lack of money or insurance, etc.?

HUGS,

Mark
"May your life preach more loudly than your lips."
~ William Ellery Channing (Unitarian Minister)

Offline leatherman

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once you are undetectable, the chance of you passing the virus along to someone else is very, very minimal. (Some people say impossible, but I won't go that far).
why not say that? that's what the experts have said

Quote
When asked what the study tells us about the chance of someone with an undetectable viral load  transmitting HIV, presenter Alison Rodger said: "Our best estimate is it's zero."
http://www.aidsmap.com/No-one-with-an-undetectable-viral-load-gay-or-heterosexual-transmits-HIV-in-first-two-years-of-PARTNER-study/page/2832748/
*note that the people participating in this study had been UD for 2 years or more. We cannot assume that a person cannot transmit HIV within the first few months of being UD. Further studies should tell us whether it's 6 months, 1 yr, or 2 yrs. However what we do know is that someone who has been UD for a certain amount of time has a 0% chance of transmitting HIV.

I would like to ask, why did you stop?
Were there problems such as side effects, lack of money or insurance, etc.?
although I was harsh in my first reply to PozS, I too hope that PozS will start his own thread to discuss his problems with staying on meds (especially ever such a long history of adherence), so that we can perhaps offer better advice than criticizing his poor choices in personal health care.
leatherman (aka mIkIE)

So we put our hands up like the ceiling canít hold us
"Can't Hold Us" - Macklemore & Ryan Lewis

chart from 1992-2015 Reyataz/Norvir/Truvada

 


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