Welcome, Guest. Please login or register.
March 19, 2024, 05:50:56 am

Login with username, password and session length


Members
Stats
  • Total Posts: 772785
  • Total Topics: 66296
  • Online Today: 290
  • Online Ever: 5484
  • (June 18, 2021, 11:15:29 pm)
Users Online
Users: 0
Guests: 240
Total: 240

Welcome


Welcome to the POZ Community Forums, a round-the-clock discussion area for people with HIV/AIDS, their friends/family/caregivers, and others concerned about HIV/AIDS.  Click on the links below to browse our various forums; scroll down for a glance at the most recent posts; or join in the conversation yourself by registering on the left side of this page.

Privacy Warning:  Please realize that these forums are open to all, and are fully searchable via Google and other search engines. If you are HIV positive and disclose this in our forums, then it is almost the same thing as telling the whole world (or at least the World Wide Web). If this concerns you, then do not use a username or avatar that are self-identifying in any way. We do not allow the deletion of anything you post in these forums, so think before you post.

  • The information shared in these forums, by moderators and members, is designed to complement, not replace, the relationship between an individual and his/her own physician.

  • All members of these forums are, by default, not considered to be licensed medical providers. If otherwise, users must clearly define themselves as such.

  • Forums members must behave at all times with respect and honesty. Posting guidelines, including time-out and banning policies, have been established by the moderators of these forums. Click here for “Do I Have HIV?” posting guidelines. Click here for posting guidelines pertaining to all other POZ community forums.

  • We ask all forums members to provide references for health/medical/scientific information they provide, when it is not a personal experience being discussed. Please provide hyperlinks with full URLs or full citations of published works not available via the Internet. Additionally, all forums members must post information which are true and correct to their knowledge.

  • Product advertisement—including links; banners; editorial content; and clinical trial, study or survey participation—is strictly prohibited by forums members unless permission has been secured from POZ.

To change forums navigation language settings, click here (members only), Register now

Para cambiar sus preferencias de los foros en español, haz clic aquí (sólo miembros), Regístrate ahora

Finished Reading This? You can collapse this or any other box on this page by clicking the symbol in each box.

Author Topic: Not taking HIV meds and making a hard decision to do so....anyone wants to share  (Read 39561 times)

0 Members and 1 Guest are viewing this topic.

Offline hawaiianbl@yahoo.com

  • New Member
  • Posts: 2
I just decided not take my HIV meds can anyone share some insight?

Offline leatherman

  • Global Moderator
  • Member
  • Posts: 8,583
  • Google and HIV meds are Your Friends
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 Michael)

We were standing all alone
You were leaning in to speak to me
Acting like a mover shaker
Dancing to Madonna then you kissed me
And I think about it all the time
- Darren Hayes, "Chained to You"

Offline jkinatl2

  • Member
  • Posts: 6,007
  • Doo. Dah. Dipp-ity.
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

  • New Member
  • Posts: 2
i have been positive since 1996 side affects had put me in the hospital for 3months.

Offline jkinatl2

  • Member
  • Posts: 6,007
  • Doo. Dah. Dipp-ity.
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

  • Member
  • Posts: 6,007
  • Doo. Dah. Dipp-ity.
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

  • Member
  • Posts: 2,701
  • Current ambition. Walk the Dog .
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

  • Member
  • Posts: 1,906
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

  • Member
  • Posts: 5,048
  • "1987 Classic Old School POZ+"
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

  • Member
  • Posts: 2,701
  • Current ambition. Walk the Dog .
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

  • Member
  • Posts: 5,470
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

  • Member
  • Posts: 1,523
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

  • Member
  • Posts: 130
  • 2010
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

  • Member
  • Posts: 4
  • Looking to befriend other guys in the U.K
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

  • Member
  • Posts: 3
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

  • Member
  • Posts: 2,701
  • Current ambition. Walk the Dog .
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

  • Member
  • Posts: 16
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

  • Member
  • Posts: 159
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

  • Global Moderator
  • Member
  • Posts: 8,583
  • Google and HIV meds are Your Friends
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 Michael)

We were standing all alone
You were leaning in to speak to me
Acting like a mover shaker
Dancing to Madonna then you kissed me
And I think about it all the time
- Darren Hayes, "Chained to You"

Offline amaphot

  • Member
  • Posts: 4
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

  • Member
  • Posts: 130
  • 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

  • New Member
  • Posts: 2
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

  • Administrator
  • Member
  • Posts: 28,134
  • It just is, OK?
    • 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

Condom and Lube Info  

"...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

  • New Member
  • Posts: 2
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

  • New Member
  • Posts: 2
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

  • Standard
  • Member
  • Posts: 244
  • Instaurator Ruinae
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

  • Administrator
  • Member
  • Posts: 17,064
  • How am I doing Beren ?
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 .     
HIV 101 - Basics
HIV 101
You can read more about Transmission and Risks here:
HIV Transmission and Risks
You can read more about Testing here:
HIV Testing
You can read more about Treatment-as-Prevention (TasP) here:
HIV TasP
You can read more about HIV prevention here:
HIV prevention
You can read more about PEP and PrEP here
PEP and PrEP

Offline deibster

  • Member
  • Posts: 159
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

  • New Member
  • Posts: 1
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

  • Member
  • Posts: 1,523
@ 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

  • Global Moderator
  • Member
  • Posts: 8,583
  • Google and HIV meds are Your Friends
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 Michael)

We were standing all alone
You were leaning in to speak to me
Acting like a mover shaker
Dancing to Madonna then you kissed me
And I think about it all the time
- Darren Hayes, "Chained to You"

Offline Wade

  • Global Moderator
  • Member
  • Posts: 3,447
@ 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.
HIV 101 - Basics
 HIV 101
 You can read more about Transmission and Risks here:
 HIV Transmission and Risks
 You can read more about Testing here:
 HIV Testing
 You can read more about Treatment-as-Prevention (TasP) here:
 HIV TasP
 You can read more about HIV prevention here:
 HIV prevention
 You can read more about PEP and PrEP here
 PEP and PrEP

Offline leatherman

  • Global Moderator
  • Member
  • Posts: 8,583
  • Google and HIV meds are Your Friends
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 Michael)

We were standing all alone
You were leaning in to speak to me
Acting like a mover shaker
Dancing to Madonna then you kissed me
And I think about it all the time
- Darren Hayes, "Chained to You"

Offline Duskeladus

  • New Member
  • Posts: 1
I stopped taking my meds in June last year. Its a year plus now. How safe am I?

Offline Jeff G

  • Administrator
  • Member
  • Posts: 17,064
  • 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 .
HIV 101 - Basics
HIV 101
You can read more about Transmission and Risks here:
HIV Transmission and Risks
You can read more about Testing here:
HIV Testing
You can read more about Treatment-as-Prevention (TasP) here:
HIV TasP
You can read more about HIV prevention here:
HIV prevention
You can read more about PEP and PrEP here
PEP and PrEP

Offline Dachshund

  • Member
  • Posts: 6,058
Hello,



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

Wow, just wow.

Offline aztecan

  • Member
  • Posts: 5,530
  • 36 years positive, 64 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

  • Member
  • Posts: 5,530
  • 36 years positive, 64 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

  • Global Moderator
  • Member
  • Posts: 8,583
  • Google and HIV meds are Your Friends
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 Michael)

We were standing all alone
You were leaning in to speak to me
Acting like a mover shaker
Dancing to Madonna then you kissed me
And I think about it all the time
- Darren Hayes, "Chained to You"

Offline Brian Harvill

  • Member
  • Posts: 9
I fully understand that what I am about to say will not sit well with many people, judging from the posts I have read. NOR AM I ENCOURAGING anyone to act in conjunction with my post.

Having been at this HIV game for the last 29 years (coming up Feb 27th), I have seen the whole treatment issue with drug regimens evolve and change. First there was the mega dosages of AZT which completely destroyed many lives (mine included with permanent neuropathy), and the idea that it was advisable for people to take "drug holidays". That has changed to now an encouragement to remain on HAART for the remainder of one's life.

Personally I still hold with the old drug holiday idea simply because it makes common sense as well as personal experience. As for the common sense arguments, look to the issue of DDT resistance which occurs during constant exposure to DDT. Likewise constant exposure to HIV meds tends to increase resistance over time with more and more virus being exposed and mutating to a resistant strain.

As for personal experience, I have spent my 29 years with on and off again drug regimens and I have ZERO resistance to ANY HIV drugs. Now this may be because of the strain of virus that I have but I have seen people do all the "right" things and they are dead, I have also seen others who like me indulge in the drug holiday and they are also dead. That tells me that the issue is a personal matter and the way drugs affect you is based on your personal experience with HIV.

I do however tell my doctors in advance of my way of living with HIV and if they don't like it, I find another physician. This is my life and my experience and I am the one that should make the decisions, NOT the doctor. I was never so ill as when I allowed my life to be ruled by HIV and controlled by "doctor's orders".

As for the issue of medications and HIV mortality. The fact remains that REGARDLESS of whether you do or do not take your medications, the end result is the same, AIDS is a fatal illness and so it is a personal decision whether to take a drug that has high levels of side-effects or to enjoy your quality of life (as you may define "quality").

I would like to yet again STRESS THAT I AM NOT encouraging anyone to toss out their medications, that is a decision that should be made individually and with the best information that is available. AND if a person decides NOT to take their medications, they should be respected for their choice.

Offline Jeff G

  • Administrator
  • Member
  • Posts: 17,064
  • How am I doing Beren ?
I fully understand that what I am about to say will not sit well with many people, judging from the posts I have read. NOR AM I ENCOURAGING anyone to act in conjunction with my post.

Having been at this HIV game for the last 29 years (coming up Feb 27th), I have seen the whole treatment issue with drug regimens evolve and change. First there was the mega dosages of AZT which completely destroyed many lives (mine included with permanent neuropathy), and the idea that it was advisable for people to take "drug holidays". That has changed to now an encouragement to remain on HAART for the remainder of one's life.

Personally I still hold with the old drug holiday idea simply because it makes common sense as well as personal experience. As for the common sense arguments, look to the issue of DDT resistance which occurs during constant exposure to DDT. Likewise constant exposure to HIV meds tends to increase resistance over time with more and more virus being exposed and mutating to a resistant strain.

As for personal experience, I have spent my 29 years with on and off again drug regimens and I have ZERO resistance to ANY HIV drugs. Now this may be because of the strain of virus that I have but I have seen people do all the "right" things and they are dead, I have also seen others who like me indulge in the drug holiday and they are also dead. That tells me that the issue is a personal matter and the way drugs affect you is based on your personal experience with HIV.

I do however tell my doctors in advance of my way of living with HIV and if they don't like it, I find another physician. This is my life and my experience and I am the one that should make the decisions, NOT the doctor. I was never so ill as when I allowed my life to be ruled by HIV and controlled by "doctor's orders".

As for the issue of medications and HIV mortality. The fact remains that REGARDLESS of whether you do or do not take your medications, the end result is the same, AIDS is a fatal illness and so it is a personal decision whether to take a drug that has high levels of side-effects or to enjoy your quality of life (as you may define "quality").

I would like to yet again STRESS THAT I AM NOT encouraging anyone to toss out their medications, that is a decision that should be made individually and with the best information that is available. AND if a person decides NOT to take their medications, they should be respected for their choice.

You are right that your post doesn’t sit well with some people … its terrible advice and does not make common sense at all. You are far more likely to become resistant to meds by not being adherent so saying a drug holiday is way to prevent it is misleading and dangerous .

Its OK that you post that you take drug holidays, I don’t have a problem with that but you must remember we have lots of new members who are still learning the ropes so we cant let misinformation and personal theory be put out there and not correct glaring untruths.

You are not only wrong in your drug resistance theory you have it completely backwards. There are times when doctors will ask a patient to go off meds for a time but there are special circumstances and better ways to do it than suggesting that drug holidays have a benefit at preventing resistance issues … its simply not true.

Please people … do not listen to the advice Brian has given. Its terrible advice so follow it at your own peril .

Brian … you finished by saying … I would like to yet again STRESS THAT I AM NOT encouraging anyone to toss out their medications, that is a decision that should be made individually and with the best information that is available. AND if a person decides NOT to take their medications, they should be respected for their choice.

After what you shared your finish was too little too late. I do not want to come off harsh and I hope you stick around but this kind of posting is unacceptable .
HIV 101 - Basics
HIV 101
You can read more about Transmission and Risks here:
HIV Transmission and Risks
You can read more about Testing here:
HIV Testing
You can read more about Treatment-as-Prevention (TasP) here:
HIV TasP
You can read more about HIV prevention here:
HIV prevention
You can read more about PEP and PrEP here
PEP and PrEP

Offline Brian Harvill

  • Member
  • Posts: 9
jeff-
Thanks for the reply. I would like to note that I STARTED AND FINISHED my comments by stressing that I am not encouraging people to act as I have just because of my post.

NOR did I say that taking a drug holiday would prevent resistance, just that the scientific advice has changed from pro holidays to anti-holidays.

I am merely here to share my experiences, experiences that are shared by many long-term survivors as well. HIV acts on everyone differently based on many different factors such as pre-infection health, viral strain, re-infection with new strains, diet, exercise, etc.

I am merely making the point that a person should have the right to determine their OWN path and that for a successful life with HIV, it is important to educate yourself but also to find out what works best for you.

For me that means to NOT allow my life to be dictated by drug regimens and constant focus on HIV. There is ample room for people to have a life that is NOT ruled by HIV.

I put it this way. I have HIV, HIV does NOT have me.

I do plan to stick around as long as there is breath in my body and I am allowed to post here. My views are NOT always the best but are always going to be a record of my personal journey, one that will allow some who have chosen as I have to use meds when the body needs the help and to allow my body to function naturally otherwise. AND to do this without being disrespected or insulted/antagonized.

Offline BT65

  • Global Moderator
  • Member
  • Posts: 10,786
Brian, I have to echo what Jeff stated.  And while you stated you do not encourage people to follow your advice what stood out to me (and I am a long term'er) was the fact that med holidays are A GOOD IDEA.  Even though I read your "disclaimer" that is not what stood out. Imagine what a newly diagnosed person will get out of your post.

This is dangerous and reckless advice.  It's playing Russian roulette and eventually the gun will go off.  Please refrain from posting about taking drug holidays.  It simply is not acceptable. Thank you for your cooperation.

Betty
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Condom and Lube Info https://www.poz.com/basics/hiv-basics/safer-sex
Please check out our lessons on PEP and PrEP. https://www.poz.com/basics/hiv-basics/pep-prep

https://www.poz.com/basics/hiv-basics/treatmentasprevention-tasp

Offline OneTampa

  • Member
  • Posts: 3,021
  • "Butterflies are free."
I agree with Betty and Jeff.

Brian your advice, despite the soft served caveats, is quite dangerous.  And also as a LTS (31 years) I am unanimous in my assessment.

Its like telling someone, "Go ahead. I don't see any traffic. You can put the blindfold on and cross the 12 lane highway and make it safely to the other side."
[/i]

"He is my oldest child. The shy and retiring one over there with the Haitian headdress serving pescaíto frito."

Offline RC

  • Member
  • Posts: 3
I just decided not take my HIV meds can anyone share some insight?
If your in Hawaii, so am I. My meds were doing the same thing and when I insisted that my meds be changed I was told NO. They said they do not have the resources. When I complained doctor after doctor refused to even see me. Now the one doctor that has been seeing me has given me 3 months to leave. She took me off of all the supporting meds that we need to take with the older HIV meds until I was forced to stop taking my HIV meds. They literally grabbed the meds I had left out of my hand. They have made it very clear that I will receive no further medical attention. It turns out that in Hawaii if you are forced to have medicaid and have been positive for many years they have decided they don't have the resources for us and it is time for us to die. I would not doubt it if they are doing the same thing to you. The Hawaii2 Zero program here is run by the state and they have vowed to make all islands free of all HIV/AIDS. That is actually their goal statement. They already claim that Kauai is free of all HIV and AID, but that is simply because there are no people living there....on Medicaid...with HIV or AIDS. In Kauai, they have either died or moved away, so go figure.  In Hawaii HIV testing has been made mandatory without consent. It is written into the paper we sign to be treated at all. Hilo Medical Group claims there are no HIPPA laws in Hawaii. All Medicaid people are to be turned into the State with and their name and address is given to all State agencies and you are to be tracked and controlled. They have given my status to the whole community and I have had car loads of people come to my home to beat me, evicted, and the landlord I have now heard me crying the other night and called the police on me. The month before their handyman beat me when I refused to have sex with him, and there is absolutely nothing I can do about it. My experience is that they will NOT give you the new HIV meds, you can keep taking the old ones that give us gullstones, make our teeth fall out, and are killing our livers. If you are on Medicaid you will die if you do not leave the islands. I have documented proof of every word I've said and not one gov. agency here will even deal with me. I am told to count my blessings that I am allowed to live here at all. If this post is noticed, I will be punished further, but if your in Hawaii we are in the same boat, literally.  I am alone and frightened for my life. So Please Answer: Did you tell your doctors you wanted better meds? 

 


Terms of Membership for these forums
 

© 2024 Smart + Strong. All Rights Reserved.   terms of use and your privacy
Smart + Strong® is a registered trademark of CDM Publishing, LLC.