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Author Topic: I think Im going to stop meds..  (Read 6178 times)

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Offline Lis

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I think Im going to stop meds..
« on: May 27, 2007, 09:52:36 PM »
I have had enough of them.. I'm sick all the time.. I have but a sliver of my old life.. so what am I hanging on to?  If this is the answer to this thing called AIDS, then I think that the question was wrong...


the girl that is just tired of the pain.......
poz 1986....

Offline fondeveau

  • Member
  • Posts: 425
Re: I think Im going to stop meds..
« Reply #1 on: May 27, 2007, 10:01:18 PM »
Sometimes people who are very much at peace with themselves can make decisions to forego treatment.  I'm waiting for a friend to die of cancer.  At her age, she opted to not take any treatment at all.  I noticed that you have been positive since 1986, but haven't really said much as to what treatment you are receiving.  Whatever your final decision is, peace be with you.

Offline Andy Velez

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Re: I think Im going to stop meds..
« Reply #2 on: May 27, 2007, 10:23:53 PM »
Lis, I hear the weariness in what you have written. I'm also wondering what kind of conversation you have had with your doctor about this.

I support your choosing whatever seems right for you to do. I also ask that you keep talking to us about whatever is going on.

Cheers,
Andy Velez

Offline asaint

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Re: I think Im going to stop meds..
« Reply #3 on: May 27, 2007, 10:28:47 PM »
Lis Com'on hun stick with it for one more month. What's the worst that can happen by doing so?
Bob
6/11 VL <50   CD4 (9%)   CD8 (54%}

Offline dad1216

  • Member
  • Posts: 135
Re: I think Im going to stop meds..
« Reply #4 on: May 27, 2007, 10:39:09 PM »
Lis,

You are not alone....I know exactly where you are coming from....just wanted to send my best to you....I would like to share how the last 9 months have been for me after making this same decision, but will not do it here....if you would like to, please PM me.....

Bob
23 years HIV+ (Oct 88)
11 years AIDS (March 00)

CD4=83  VL=47,000  (May 2011)
CD4=63  VL=78,470  (Oct 2010)
Prezista..Norvir..Truvada

Offline Life

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Re: I think Im going to stop meds..
« Reply #5 on: May 27, 2007, 10:40:57 PM »
Lis,  I am sure that there is a point in everyone's life (hiv/aids or not) when the playing field is just so slanted against us, the only way out of it seems to be clearer & clearer..  With such a decision in front of you,  please pull ALL your resources together such as your family, friends and your doctors...   I am so sad that you are having to go through such pain and disappointment right now.   I hope and pray that you will find something that will lift your spirits, and your health.

In Love and Prayer,


Eric  

Offline Lis

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Re: I think Im going to stop meds..
« Reply #6 on: May 27, 2007, 10:43:03 PM »
Dad... please post how it has been for you... and thank you ALL
poz 1986....

Offline sdcabincrew74

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Re: I think Im going to stop meds..
« Reply #7 on: May 27, 2007, 11:13:03 PM »
Lis - you are a smart, strong, and brave person.  What ever your final decision I am sure you did what you had to do to be happy.  Although, it makes me sad to see you suffering I am sure you are doing what is best for you.
The difference between an overnight and a layover is luck!

Offline aztecan

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Re: I think Im going to stop meds..
« Reply #8 on: May 27, 2007, 11:44:13 PM »
Lis,

I have known things have been tough for you for a long time now. I wish there were a way I could make things easier or better, but there really isn't.

Whatever you decide, know I will give you my support.

HUGS,

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

Offline dad1216

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Re: I think Im going to stop meds..
« Reply #9 on: May 28, 2007, 12:27:52 AM »
Lis,

When I made my decision it was a lot like where you are now...the constant pain...sickness...the loss of who I was.  Even with being adherent to my toxic meds, for me they were doing more harm than good....my CD4's kept dropping down to 3, my % was at 2, and the viral load was climbing higher and higher...I could not take, or handle another regimen change, also there wasn't a big choice of regimens to change to.  The doc's all wanted to keep trying, but with my history the prognosis wasn't good. Enough was enough...I was not going to live out the rest of my life this way.  I needed to have some part of me back. 

I so remember being that happy guy thinking just take your meds and all will be fine, I so believed in that, doing everything the doc's told me to, not ever thinking that this would happen to me.  It's not suppose to be this way....I did everything right. 

First thing I did was accept what was now handed to me, I stayed on the meds for awhile, curled up in a ball in my bed most of the day.  Pills to wake me, pills to make me eat, pills to take the pain away, pills to put me to sleep....pills...pills...pills.  I was suffering extreme wasting.  This is not a way to live for me.  So finally after intense therapy...long long talks with my kids...my family...my friends, I was ready to let nature take it's course.  I know one of my worst battles for me to overcome was that I was committing suicide, but thankfully I had some great therapists.

I thought that when I stopped all the meds...it would just be a matter of time...and I accepted that.  I prepared for it all.  We all prepared for it.  I had no idea what would happen...when you just let this bug take over and let it consume your body.  No one talks about this, I was so alone.  So here I was...would it be a day, a week, a month. 

Time started clicking by...and I found myself out of bed more than usual...I was eating again...I wasn't as sick...some of the pain was going away...what the hell is going on!!  Now 9 months later...I have put on the 30 or so pounds that I lost....I have more energy....I sleep normally getting up at the crack of dawn....no naps during the day...for me it is unbelievable. 

Is it going to remain this way...absolutely not...I will crash and burn...and I am ready for that.  But you know what....I am me again!! 

Is it a walk in the park....NO....but I can a least now I can go to the park.

I feel it taking my body over each and every day....I have accepted the fact that my end is near...but I will live the rest of my life out in control of my own destiny...no hyped up expectations...just the reality...I have AIDS, and I will die of AIDS, and will live each moment to the fullest, until the time comes that I return to that bed for the final battle. 

I am not just a shell of a man anymore...

Now it's not all pretty...I DO have those bad days, just like with the meds...just not everyday like it was...

Above all a great support system is needed....not all will understand why you give up meds...and not treating something that people think a pill a day and all will be fine....owning your decision is a must...and this is the biggest decision of your life....dig very deep inside you.

Talk with your doc's....(they won't probably agree)....find a good therapist....open your heart to your family...open your soul to yourself...make this your decision....make it what is right within you.

Bob
23 years HIV+ (Oct 88)
11 years AIDS (March 00)

CD4=83  VL=47,000  (May 2011)
CD4=63  VL=78,470  (Oct 2010)
Prezista..Norvir..Truvada

Offline Iggy

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Re: I think Im going to stop meds..
« Reply #10 on: May 28, 2007, 09:25:05 PM »
Lis,

Being one not on meds it feels absolutely inappropriate for me to say anything here so I hope you will not get mad if I do say something that is just ignorant.

Even though I think meds are necessary - I don't think it is as black and white as take your meds or you will die.  I think the choice is yours and one that is worth exploring. As Dad said - please consult your doctor before stopping them.   

I'm hoping the best for you in this one...and I'm sorry I can't offer you anything of substance in my understanding or way to help.

My best to you Lis,

Iggy

Offline kellyspoppi

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Re: I think Im going to stop meds..
« Reply #11 on: May 28, 2007, 10:09:30 PM »
dad,

my wife and i just read your post to lis, and we are both in agreement. what an incredible gift you have given her.

my wife and i are both LTS's and agree with you dad. not much is ever said here (at least that i have read) that i have seen where members or guests have come to the point where you 2 have. as a matter of fact, it has been quite some time since my wife and i have spoke to or met someone who was actually dying of aids, or even where they had reached the end of their options. most of our poz friends and acquaintences who have passed away since HAART have died of other illnesses.

yes we have heard of a few who were feeling so sick where they would take a self enduced holiday, but as incredible as it may seem, just haven't come upon this situation since pre-HAART.

this was a sobering reminder to us what is yet to come. but i agree, it must be said as,  sooner or later, we all know our day will come.

i will always remember your post as a source of inspiration when my day comes. you didn't sugar coat it, but what you did insist, which i believe strongly in, is to live life to the fullist & on YOUR OWN terms. 

our thoughts and prayers are with you both in this journey you have chosen. may you be at peace with those closest to you so that you can continue to live life on your own terms.

kellyspoppi

Offline Lis

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Re: I think Im going to stop meds..
« Reply #12 on: May 28, 2007, 10:38:03 PM »
thank you Dad.... you are a rare and brave man....
poz 1986....

Offline Jerry71

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Re: I think Im going to stop meds..
« Reply #13 on: May 28, 2007, 10:44:37 PM »
Lis it is sad to hear you want to give up taking your meds. There are days I feel the same but I still pop those pills and think that hopefully one day my numbers will improve. After being on these meds going on two years+ some it has not been a easy task. I was taken all those antidepressant pills and I just got so fed up with them that I said one day enough is enough and I have went off of them.

I was put on Mepron and it just got to the point I stopped taking that also. Hate the taste and the stuff really just was not for me. Bactrim I can not take. So now each month I have to go to the hospital and take a Nebupent breathing treatment. The nuse told we the last time I was there that when my numbers got up too 500 I could come off of the treatment. I laughed at her and said I have been under 200 for over two years and really it would shock me if I ever reached 500 in my life time.

So what ever you do girl just remember one thing you are in my prayers. Just hope the best will come out of it all. Take care. Love ya. Jerry :'(

Offline Miss Philicia

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Re: I think Im going to stop meds..
« Reply #14 on: May 29, 2007, 12:25:03 AM »
Lis, I wish you the best.  I know from your posts how hard it's been recently.  It's always in the back of my mind, that if I was in that situation (and I've been popping those pills for almost 15 years) I'd do the same thing at a certain point.  Whatever your choice you are in my thoughts.
"Iíve slept with enough men to know that Iím not gay"

Offline anniebc

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Re: I think Im going to stop meds..
« Reply #15 on: May 29, 2007, 03:15:59 AM »
Dearest Lis

I know you have had so many problems over the last few months, I can't begin to imagine the pain you are going through, I have only been living with this for 5 years.

I only wish there was some other options open to you, and like everyone here I will respect whatever decision you come to..you are in my thoughts.

(((hugs)))
Jan  :'(
-----------------------------------------------------------------------
Never knock on deaths door..ring the bell and run..he really hates that.

Offline ACinKC

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Re: I think Im going to stop meds..
« Reply #16 on: May 29, 2007, 12:02:36 PM »
Good luck lis.  Didnt even read the replies and I may not.  It is your choice as it is everyone elses.  May your numbers stay as high as possible for as long as possible!!!!

LIFE is not a race to the grave with the intention of arriving safely
in a pretty and well-preserved body, but, rather to skid in broadside,
thoroughly used up, totally worn out, and loudly proclaiming--WOW! WHAT A
RIDE!!!

Offline AlanBama

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Re: I think Im going to stop meds..
« Reply #17 on: May 29, 2007, 12:06:34 PM »
Honey,

I know you are worn out.   I understand completely.   I also know you won't make this decision without thinking long and hard about it, and the consequences.   There are days I would love to pitch all of my meds out the window...but I won't, mainly for the simple reason that I am not brave enough to face the fate that would await me (I have visited it once, before I had the meds I have now, and it was not a place I ever want to see again).

I hope we can talk soon

Love you,

Alan
"Remember my sentimental friend that a heart is not judged by how much you love, but by how much you are loved by others." - The Wizard of Oz

Offline kentb

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Re: I think Im going to stop meds..
« Reply #18 on: May 29, 2007, 12:37:46 PM »
Lis, I will now take time out of my busy schedule and offer a prayer of peace and comfort for you, as well as I hope that you can get some rest and come back refreshed and recharged.  I know this is an ongoing battle but please consider hanging on to the regimen.

Kindest thoughts,

kent

Offline Dragonette

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Re: I think Im going to stop meds..
« Reply #19 on: May 29, 2007, 06:54:43 PM »
Dear Lis,

I am very sad when i read this because of all the suffering that underlies these thoughts. I remeber, when family members were on chymo, and they wouldn't move, and didn't do anything but vomit and lie down, and just wanted to die, it breaks my heart.

My social worker at the hospital told me they have had patients choose to quit drugs and the respected that. In the Netherlands, euthenasia is also legal, so they are quite open about it.

I know, that no one can make this descision for someone else, and that anyone can be at this point (with or without AIDS/HIV).

I just want to point that there are treatments coming out in the next years for people who have become resistent, and they are supposedly less harsh than existing options, not long ago it was posted here on a new drug class that just becamse available in 60 Spanish hospitals.

I don't know if this is relevant to you. I don't know if you can stand more suffering.

I wish I could give you a big hug and make some of it go away...

Please take care,
"If you keep one foot in yesterday, and one in tomorrow, you piss all over today". Betty Tacy

Offline Andy101

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  • Hello there,, How are ya ???
Re: I think Im going to stop meds..
« Reply #20 on: May 29, 2007, 07:20:37 PM »
Wow,, what a night to start reading these forums..!!!

I replied to my first post with a health dose of zeal, hoping that my answers may hold the key,, maybe,, maybe not,, but i tried to contribute,, thats what these forums are for yes,,,

And now I read this posted by Lis,,

and im stunned,, coz i dont know what to say,, i have never met this lady, but i can feel her fear and tierdness, and Im still a newbie,, less than two years in,, I cant even imagine what you have gone through, but i just hope that i manage to deal with what i will have to go through with half of your bravery,

I am a 38 year old soldier that has seen active service, i have seen my best friends fall i have been shot at, and been blown up,, but none of that scared me as much as this does,,

I do my best ,, i deal with it in my way,, but every now and then i read something that takes over all my emotions, and all I do is feel for that person,

Lis, I wish you all the best, and i will repsectfully support you in your choice,, i cant imagine, i wont even try to ,, i just hope that i can be half as brave as you,,

My heart  goes out to you ,, it really does,, all I will say is this,, you havent given up without a fight before,, please think again and dont give up on this one,,

Andy   :'( :'( :'(
still thinking about this one !!!

Dan J.

  • Guest
Re: I think Im going to stop meds..
« Reply #21 on: May 29, 2007, 07:55:01 PM »
Lis,

I understand.

 

Dan

 :'(
« Last Edit: May 29, 2007, 07:56:44 PM by Dan J. »

Offline Lis

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Re: I think Im going to stop meds..
« Reply #22 on: May 30, 2007, 11:15:25 PM »
thank you all for the support... I hate that i seem to be the boy that called wolf.. I just need to put my feelings out there, not for anything other then being able to read them...

 I stopped the meds for a time... and I gotta tell you.. I felt like me again, I didnt get up and throw up,  i was HUNGREY!! and that felt GOOD!!!  I checked my BS at the door (for my kids)  and am back to square one... Thank you all.. putting your feelings out there is such a bit of fresh air...

Thank you ALL!!!
poz 1986....

Offline Andy Velez

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Re: I think Im going to stop meds..
« Reply #23 on: May 31, 2007, 12:39:15 PM »
Good to hear more from you, Lis. And glad to know you got to enjoy feeling like yourself again.

Keep on truckin' in whatever way your heart, mind, instinct and understanding support tell you is right for you.
Andy Velez

Offline Christine

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Re: I think Im going to stop meds..
« Reply #24 on: May 31, 2007, 03:48:50 PM »
Liz,
I have not been online much the past few weeks, and when I logged on today, i felt alone, and lost. Then I read your post, and felt your weariness, the suffering, and I want you to know i understand. I wish so much I did not know what you feel, but I do.

I send you my support, and comfort.

Christine
Poz since '93. Currently on Procrit, Azithromax, Pentamidine, Valcyte, Levothyroxine, Zoloft, Epzicom, Prezista, Viread, Norvir, and GS-9137 study drug. As needed: Trazodone, Atavan, Diflucan, Zofran, Hydrocodone, Octreotide

5/30/07 t-cells 9; vl 275,000

Offline allopathicholistic

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Re: I think Im going to stop meds..
« Reply #25 on: June 22, 2007, 11:35:32 PM »
thank you all for the support... I hate that i seem to be the boy that called wolf

We'll never think that of you Lis. I just wish the pharma companies would come up with a once-a-week or once-a-month drug to give our bodies a much-needed freaking break. Or better yet, the goshdarn cure

Offline red_Dragon888

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Re: I think Im going to stop meds..
« Reply #26 on: June 22, 2007, 11:43:25 PM »
i understand
« Last Edit: June 23, 2007, 12:09:47 AM by red_Dragon888 »
http://www.youtube.com/watch?feature=player_embedded&v=I3ba3lnFHik

ďNeither look forward where there is doubt nor backward where there is regret. Look inward and ask not if there is anything o

Offline mjmel

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Re: I think Im going to stop meds..
« Reply #27 on: June 23, 2007, 10:40:30 AM »
I don't understand. However, I realize ..... it's YOUR life.
empahtically,
Mike

Offline dtwpuck

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Re: I think Im going to stop meds..
« Reply #28 on: June 23, 2007, 11:34:29 AM »
thank you all for the support... I hate that i seem to be the boy that called wolf.. I just need to put my feelings out there, not for anything other then being able to read them...



Lis, if putting your feelings out there is the way you can help yourself put your feelings into perspective, please never hesitate or apologize.
Your life is your life.  The only thing another human being can do for you to show you love is to support you and hold your hand through the rough spots.  We will all pass on some day.  It's better to spend the time you have in happiness and comfort than pain.  This is true for everyone, but it seems that we can only take it to heart when we read about lives like yours.

Be well... and mostly.... be happy.

Much love,
scott
Floating through the void in the caress of two giant pink lobsters named Esmerelda and Keith.

Offline capemann

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Re: I think Im going to stop meds..
« Reply #29 on: July 17, 2007, 01:50:36 PM »
you can always go back on meds, so go ahead and take a break! I have been on and off over the past 10 years, in fact i have been off more then i have been on meds. And i'm doing fine.

Offline Queen Tokelove

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Re: I think Im going to stop meds..
« Reply #30 on: July 17, 2007, 02:01:08 PM »
I'm glad this got bumped back up....I'm wondering if Lis did actually stop her meds and how she is holding up since...Anyone heard from her?
Started Atripla/Ziagen on 9/13/07.
10/31/07 CD4-265 VL- undetectable
2/6/08 CD4- 401 VL- undetectable
5/7/08 CD4- 705 VL- undetectable
6/4/08 CD4- 775 VL- undetectable
8/6/08 CD4- 805 VL- undetectable
11/13/08 CD4- 774 VL--undetectable
2/4/09  CD4- 484  VL- 18,000 (2 months off meds)
3/3/09---Starting Back on Meds---
4/27/09 CD4- 664 VL-- undetectable
6/17/09 CD4- 438 VL- 439
8/09 CD4- 404 VL- 1,600
01-22-10-- CD4- 525 VL- 59,000
Cherish the simple things life has to offer

The Royal Blog

Offline GSOgymrat

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Re: I think Im going to stop meds..
« Reply #31 on: July 17, 2007, 05:08:27 PM »
I don't equate stopping your meds with killing yourself. I've gone off meds before with a doctor's permission and felt better for it. Just do what feels right for you.

Offline anniebc

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Re: I think Im going to stop meds..
« Reply #32 on: July 17, 2007, 06:12:26 PM »
Hi Capemann

I'm sure you mean well, we all know that Lis has been struggling with this for a long time now, but I don't think it's wise just to tell her "Go ahead and do it" without advising her to talk to her Doctor first.

Lis if you are still browsing let us know how you are getting on.

Hugs
Jan :-*
-----------------------------------------------------------------------
Never knock on deaths door..ring the bell and run..he really hates that.

Online RapidRod

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Re: I think Im going to stop meds..
« Reply #33 on: July 17, 2007, 08:23:34 PM »
Jan, I talked to Lis not to long ago and she wasn't going to stop taking her meds. I told her I needed her to stick around so I would have a partner in crime.

Offline anniebc

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Re: I think Im going to stop meds..
« Reply #34 on: July 17, 2007, 09:29:56 PM »
Thanks for letting us know Rod, I'm glad Lis has decided to keep taking the meds...I know how hard that decision must have been for her.

Hugs
Jan :-*
-----------------------------------------------------------------------
Never knock on deaths door..ring the bell and run..he really hates that.

Offline Andy Velez

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Re: I think Im going to stop meds..
« Reply #35 on: July 18, 2007, 08:24:27 AM »
Yes, it's good to know she hasn't succumbed to those very understandably discouraged feelings.

And Cape, I too want to emphasize that any decision to stop meds ought to always include a thorough discussion with one's doctor(s) to consider the repurcussions.

Andy Velez

Offline capemann

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Re: I think Im going to stop meds..
« Reply #36 on: July 30, 2007, 07:25:40 AM »
you people seem to let your Doctors run your treatment, you need to educate yourself so you knowwhats best for you. These drugs can kill you, so can HIV so dont put your life in one persons hands.

Offline mjmel

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Re: I think Im going to stop meds..
« Reply #37 on: July 30, 2007, 07:47:37 AM »
you people seem to let your Doctors run your treatment, you need to educate yourself so you knowwhats best for you. These drugs can kill you, so can HIV so don't put your life in one persons hands.
capemann, I understand your emphasis on all being informed. Honestly, I do.
Let me say to you that from reading these forums I have come to appreciate that some have doctors that are not that well informed or involved. This is sad, for sure! Nevertheless, there is nothing more satisfying than a doc than is involved, interested and dedicated to saving lives and working with his/her patients to ensure the best, and most comfortable, fight against this dreadful virus.
In retrospect of your fears, capemann, most doctors do know more.
Mike

Lis: Sorry for the hijack. Thought about it later and realized this isn't the nature of this particular thread. Should have caught myself before the post.
« Last Edit: July 30, 2007, 11:43:02 AM by mjmel »

Offline Matty the Damned

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Re: I think Im going to stop meds..
« Reply #38 on: July 30, 2007, 07:51:52 AM »
you people seem to let your Doctors run your treatment, you need to educate yourself so you knowwhats best for you. These drugs can kill you, so can HIV so dont put your life in one persons hands.

You know cape, it's one thing for people to make decisions about their treatments on a completely informed basis. It's entirely another for you to give cavalier and reckless advice such as this. Whilst HIV drugs come with a range of risks, none of those even begin to approach the risks of untreated HIV infection.

Similarly, Lisbeth, who has been HIV positive longer than some of our members have been alive doesn't need to be given gratuitous advice on "being educated" by fly-by-night new members.

MtD

Offline Miss Philicia

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Re: I think Im going to stop meds..
« Reply #39 on: July 30, 2007, 11:23:20 AM »
There's a delicate line between "being informed" and your own treatment advocate, and suddenly thinking you have a PhD degree on the wall.  A simple lesson really, but I've seen it abused so many, many times.
"Iíve slept with enough men to know that Iím not gay"

 


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