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Author Topic: Fear of starting medication  (Read 9593 times)

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Offline GSOgymrat

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  • HIV+ since 1993. INTJ
Fear of starting medication
« on: March 29, 2011, 09:24:39 AM »
I just wanted to comment on several posts I have read recently regarding anxiety when starting medication. Being concerned about side effects, deciding which medications to choose and seeing pills as a physical reminder of being HIV+ is completely understandable. It is an adjustment that most people diagnosed with HIV have to face. I just wanted to point out that back when I was first HIV+ I don't remember going through the anxiety that today's generation faces. Back then I was eager to take HIV medication, pretty much anything, because I knew the alternative was getting sick and dying. Because I didn't have insurance I applied to clinical trials to receive medication. My primary criteria wasn't which medication was offered but how long the study lasted. I wanted to get on something that lasted a year but usually qualified for 3-6 months. Out of necessity I went from medication to medication, which of course is probably why I am now resistant to entire classes of medications. My CD4 just dropped until my counts were too low to qualify for clinical trials anymore. Fortunately by that time I was out of school and got a full-time job with, after a 6 month waiting period, insurance.

I find it so encouraging that many people now have choices when starting medication. The medications now are so much more effective with fewer side effects. If your doctor recommends you start medication please do so. Starting many be scary but it beats the alternative.

Offline thunter34

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  • His name is Carl.
Re: Fear of starting medication
« Reply #1 on: March 29, 2011, 09:50:34 AM »
Ford, I don't really have anything to add.  I just wanted to commend you on this post.
AIDS isn't for sissies.

Offline hope_for_a_cure

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Re: Fear of starting medication
« Reply #2 on: March 29, 2011, 10:21:01 AM »
Ford, I don't really have anything to add.  I just wanted to commend you on this post.

Agree.   How could it be put any better that that?  It cant!

Offline woodshere

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Re: Fear of starting medication
« Reply #3 on: March 29, 2011, 10:27:41 AM »
When I was diagnosed, I had no choice but to start, maybe that is why I had no apprehension about starting, it was either do or die.  But I am that way about my other 2 medications I have to take for a thyroid condition and bipolar disorder.  If I don't take my synthroid my system gets all out of whack ranging from rashes to weight gain to being virtually exhausted and not taking the bipolar pill well let's just say those results are disastrous.  

And as far as side effects, it is my understanding that when doing the clinical trials any side effect  that those involved in the trial experience are listed.  That doesn't mean that if you take those drugs you will experience every side effect.  I am on reyataz, truvada and norvir.  My only side effect is a slight raise in bilirubin.  Many people experience yellowing, but fortunately I have not had to deal with that.

In the end hand wringing and worry does no good because we really have no alternative than to take our medications.
"Let us give pubicity to HV/AIDS and not hide it..." "One of the things destroying people with AIDS is the stigma we attach to it."   Nelson Mandela

Offline thunter34

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Re: Fear of starting medication
« Reply #4 on: March 29, 2011, 11:18:10 AM »
I was also do or die, though not to the extent that Ford was - in that I did have regimen options and didn't have to bat back and forth with a pill here and a pill there.  

The pills are getting better and better.  The Truvada Prezista Norvir deal I'm on now is far and away the best I've been on yet.  Much better than the Kaletra regimen I started on, which threw my blood fats sky high led to some subsequent cardio vascular issues.

I did have the yellowing occur on Reyetaz (about a year after starting it, for some reason).  It didn't happen much at all until then, but once I got sick with some kind of bug I went deep golden yellow from there out - like office envelope kind of yellow....goldenrod.  I had to quit that one for essentially cosmetic reasons, I suppose.  My counts were great, but I was just TOO yellow to function properly in my work environment.  People thougt I had hep or some type of liver failure.

Still...it all beats dead.  I don't have resistance to any of those pills yet, and trust that I'd trot about in yellow glory if I had to.  And if, heaven forbid, I ever had to go back to Kaletra, I suppose I'd just drag my laptop into the bathroom and spend my days toilet posting.

I've done it before.   ;)

  

 
AIDS isn't for sissies.

Offline David_CA

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Re: Fear of starting medication
« Reply #5 on: March 29, 2011, 11:57:34 AM »
I had time to choose when to start meds.  The time that I 'decided' on was day 2 of an 8 day hospital stay for PCP.  I was sick as hell, on multiple antibiotics, etc.  My Dr. and I had discussed Atripla prior to any of this, so that was what I went with.  For me, as with many others, it was literally a 'do or die' kind of thing.  I had absolutely no fear of starting meds because I wanted to live.
Black Friday 03-03-2006
03-23-06 CD4 359 @27.4% VL 75,938
06-01-06 CD4 462 @24.3% VL > 100,000
08-15-06 CD4 388 @22.8% VL >  "
10-21-06 CD4 285 @21.9% VL >  "
  Atripla started 12-01-2006
01-08-07 CD4 429 @26.8% VL 1872!
05-08-07 CD4 478 @28.1% VL 740
08-03-07 CD4 509 @31.8% VL 370
11-06-07 CD4 570 @30.0% VL 140
02-21-08 CD4 648 @32.4% VL 600
05-19-08 CD4 695 @33.1% VL < 48 undetectable!
08-21-08 CD4 725 @34.5%
11-11-08 CD4 672 @39.5%
02-11-09 CD4 773 @36.8%
05-11-09 CD4 615 @36.2%
08-19-09 CD4 770 @38.5%
11-19-09 CD4 944 @33.7%
02-17-10 CD4 678 @39.9%  
06-03-10 CD4 768 @34.9%
09-21-10 CD4 685 @40.3%
01-10-11 CD4 908 @36.3%
05-23-11 CD4 846 @36.8% VL 80
02-13-12 CD4 911 @41.4% VL<20
You must be the change you want to see in the world.  Mahatma Gandhi

Offline RWR

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Re: Fear of starting medication
« Reply #6 on: March 29, 2011, 12:07:09 PM »
 Years ago when i would go to groups there would be a guy that would start AZT then after a few times He was gone.  I did not want to start it.  i told my Doctor i would at 200.  Well years went by then one day it dropped fast. The atripla has not been to bad.  I was in denial.  
Hiv+ 1986
Isentress
Truvada

Bobby

Offline surf18

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Re: Fear of starting medication
« Reply #7 on: March 29, 2011, 12:22:54 PM »
I was dxd in July with a load of 16,000 and cd 220
I didn't know anything really of what these numbers meant. My dr said to me that the aids dx number was 200 and the lower the cd the worse off.
So o decided right then and there get me meds. I started meds two days later.

Offline CaptCarl

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Re: Fear of starting medication
« Reply #8 on: March 29, 2011, 01:09:30 PM »
Ford-

   A most excellent and timely post. There is really nothing much that I can add to this. They started me on AZT about a year after diagnosis. That's all there was at the time, and the results, as they say, weren't pretty. After going off the meds due to unwillingness to deal with the side effects, I stayed off them until 1998 or so.  As it turns out, with a few spectacular exceptions, I tend to have the constitution of a lab rat, and don't suffer much from side effects.

   One thing I have found that helps the anxiety, is to NOT read the pamphlet that comes with the meds rearding side effects. If after a time, I notice something amiss, then I check it against the info packet, otherwise I'm concerned that I might be putting thoughts into my head that will cause the reactions. It also helps to remember, that most side effects are only temporary, unitl your body adjusts.

CaptCarl
The only thing I can do straight is shoot..

Offline usernotdefined

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Re: Fear of starting medication
« Reply #9 on: March 29, 2011, 01:22:28 PM »
Oh how I wish you'd posted this 3 months ago when I was freaking out about starting meds.

I'm now 2 months since starting Combivir and Kaletra as short term ART to reduce the risk of me passing the virus onto my unborn baby boy - and I certainly experienced this anxiety, particularly as I had only been diagnosed 4 weeks, and because my bloods are relatively good meaning that if it weren't for my pregnancy I wouldn't even have to consider meds for some time.

I was worried that taking meds for this limited period would make me even more scared about restarting in years to come but I now realise it's going to be fine - as you rightly say being on meds, and actually taking back some feeling of control, is much better than the alternative.

Plus, when I do restart, I wont' be on such a shitty (pardon the pun) combination  ;)

Offline Theyer

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Re: Fear of starting medication
« Reply #10 on: March 29, 2011, 01:36:32 PM »
when I was first HIV+ I don't remember going through the anxiety that today's generation faces. Back then I was eager to take HIV medication, pretty much anything, because I knew the alternative was getting sick and dying. Because I didn't have insurance I applied to clinical trials to receive medication. My primary criteria wasn't which medication was offered but how long the study lasted. I wanted to get on something that lasted a year but usually qualified for 3-6 months. Out of necessity I went from medication to medication, which of course is probably why I am now resistant to entire classes of medications.

I find it so encouraging that many people now have choices when starting medication. The medications now are so much more effective with fewer side effects. If your doctor recommends you start medication please do so. Starting many be scary but it beats the alternative.

Very much with you, I have to remind myself often that these are changed times, at first I am Patient with this fear, however it can wear thin. On  a few occasions I have let rip a very doughty old campaigner
Thanks for the posting,
theyer
« Last Edit: March 29, 2011, 01:42:00 PM by Theyer »
"If we can find the money to kill people, we can find the money to help people ."  Tony Benn

Offline RAB

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Re: Fear of starting medication
« Reply #11 on: March 29, 2011, 02:00:13 PM »
I just wanted to comment on several posts I have read recently regarding anxiety when starting medication. Being concerned about side effects, deciding which medications to choose and seeing pills as a physical reminder of being HIV+ is completely understandable. It is an adjustment that most people diagnosed with HIV have to face. I just wanted to point out that back when I was first HIV+ I don't remember going through the anxiety that today's generation faces. Back then I was eager to take HIV medication, pretty much anything, because I knew the alternative was getting sick and dying. Because I didn't have insurance I applied to clinical trials to receive medication. My primary criteria wasn't which medication was offered but how long the study lasted. I wanted to get on something that lasted a year but usually qualified for 3-6 months. Out of necessity I went from medication to medication, which of course is probably why I am now resistant to entire classes of medications. My CD4 just dropped until my counts were too low to qualify for clinical trials anymore. Fortunately by that time I was out of school and got a full-time job with, after a 6 month waiting period, insurance.

I find it so encouraging that many people now have choices when starting medication. The medications now are so much more effective with fewer side effects. If your doctor recommends you start medication please do so. Starting many be scary but it beats the alternative.

Like Thunter I have nothing more to add.  Most excellent post, because it practically mirrors my experience (was in the original AZT trial, called Protocol 019 I think).  Burned through meds on momotherapy, and ended up with multiple mutations.

The meds today are so much better than back in those days.  Of course we didn't have any choice.

I also understand the fear, I only wish I could think of some strategy to help ease it in people who are just starting.

Thanks Ford, you've started a most wonderful post.  And I for one am glad you are here sharing your experience.

RAB 

Offline Sweet_C

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Re: Fear of starting medication
« Reply #12 on: March 29, 2011, 02:12:57 PM »
When I was first diagnosed, I wanted to start treatment right away even though my numbers were still great.  I hated the idea of waiting for my numbers to drop.  I also didn't like the idea of waiting to get sick.  I knew if I had waited that I would think that every sniffle was pneumonia.  I was much more afraid of what the HIV would do to my body than what the drugs would do.  Starting the meds made me feel in control of my life and health.

I guess the meds could be seen as a daily reminder that you have HIV, but once I was diagnosed I couldn't get it out of mind I was so worried.  Everytime I take my meds I am thankful and see it as extending my life by 12 more hours. 
Tested positive on September 11, 2008

Offline thunter34

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  • His name is Carl.
Re: Fear of starting medication
« Reply #13 on: March 29, 2011, 02:31:13 PM »
I also want to say in reference to the "taking meds is a daily reminder" thing:

For me, it is and it isn't.  In one sense, it is because it is the very first thing that I do when I get out of bed.  I go directly to my pills and then get my dose out to sit on the night stand.  I make up the bed, whip up some breakfast and then plop down with the lap top to chow down and swig the pills with coffee.

In another sense, I don't "think" too much about it even while doing it.  It's like the making of the bed or the having of the coffee or brushing the teeth afterward.  It's one of those daily things that you just do.  I don't stare at the pills every day and think, "lo....behold the pills I must take every day foreverrrrrrrrrrr."

What makes me think much MORE about my status as HIV is when those pills - and the funding for them - start to get tampered with.  I think about it more when I read about someone getting thrown in jail for attempted murder for spitting at somebody and stuff like that.

THAT'S when being a pozzie most hits home for me...not when I'm swallowing my pretty pills.
AIDS isn't for sissies.

Offline Miss Philicia

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Re: Fear of starting medication
« Reply #14 on: March 29, 2011, 02:34:01 PM »
I'm reminded of HIV every time I post on this damn board. :D
"I’ve slept with enough men to know that I’m not gay"

Offline thunter34

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Re: Fear of starting medication
« Reply #15 on: March 29, 2011, 02:35:40 PM »
I'm reminded of HIV every time I post on this damn board. :D

Considering that post count, you must be reminded quite a bit.   ;D
AIDS isn't for sissies.

Offline Hellraiser

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Re: Fear of starting medication
« Reply #16 on: March 29, 2011, 02:51:14 PM »
I also had no choice but to start meds.  It was literally "Now or Never" and the way I was feeling I was eager to change my situation and begin the literal lazarus effect.

Offline Malinka

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Re: Fear of starting medication
« Reply #17 on: March 29, 2011, 04:19:14 PM »
Thank you for writing this.. I really truly cannot imagine what most people who were diagnosed before all the new meds went through. And although it doesn't immediately do away with the anxiety and fear, I should be counting my blessings.  It must be a little strange to see the sort of second generation come out with completely different experiences now that we know more about hiv and all that.

Offline Joe K

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Re: Fear of starting medication
« Reply #18 on: March 29, 2011, 06:33:46 PM »
... Back then I was eager to take HIV medication, pretty much anything, because I knew the alternative was getting sick and dying. Because I didn't have insurance I applied to clinical trials to receive medication. My primary criteria wasn't which medication was offered but how long the study lasted. I wanted to get on something that lasted a year but usually qualified for 3-6 months. Out of necessity I went from medication to medication, which of course is probably why I am now resistant to entire classes of medications. My CD4 just dropped until my counts were too low to qualify for clinical trials anymore. Fortunately by that time I was out of school and got a full-time job with, after a 6 month waiting period, insurance.

Ford, thank you for a beautiful post, but more importantly, thank you for participating in clinical trials. To so many of the newly infected, they have no concept as to what the drugs of today commanded, in research that involved thousands upon thousands of subjects. Almost everyone I knew was in a trial, ANY trial, that may keep the Grim Reaper at bay. We watched over each other and through the decades an army of volunteers has continued to advance our knowledge of HIV.

While it may not make the task of taking meds any easier, I would hope, that given the "human" cost of todays medications, that people remember, just how fortunate they truly are. Today you have a veritable menu of options, but there was a time, not so long ago, when there was nothing but hope. And speaking for myself, I am damn proud to have been in clinical trials, that resulted in the medications that we now enjoy. Sometimes it feels so damn good to know that while saving myself, I could help others.

Then again, if we didn't all enjoy helping others, we would not be here.
Life is what happens, when you are busy making other plans.

Though you may be only one person in the entire world, to one person, you may be the entire world.

I wish to become half the man, that my dog thinks I am.

Remember me with simple acts of kindness and I will live forever.

Online tednlou2

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Re: Fear of starting medication
« Reply #19 on: March 30, 2011, 12:14:20 AM »
When I learned I was being given an HIV med in the hospital, I don't remember feeling all anxious about it.  Being sick, I had resigned myself that this was what I needed to get better.  I was so looking forward to just feeling better.  As I've mentioned before, they stopped the med upon discharge with about a month to go before I saw an HIV doc.  I would learn they only had me on Sustiva mono-therapy.  My numbers rebounded out of the AIDS category to a CD4 over 1,000 and UD vl.  This is when a medical provider at the HIV clinic told me she was sure I had a false positive and that I was actually negative.  I learned that was terribly incorrect and I was resistant now to NNRTI's due to the issue at the hospital. 

So, having my numbers rebound allowed me to not have to start meds right away.  Because I was no longer in immediate danger, I debated (and still do) whether to just start meds now.  There is a fear that having resistance to a whole class of meds, I would have to be very careful not to lose another class due to not be adherent.  I'm bad at taking meds.  I'll get antibiotics and not finish them, because I feel better--which you're not suppose to do.  I've been bad at staying on depression meds.  Not being in immediate danger, I was afraid I would get to where I felt good and think I could just skip my HIV meds for that day.  I want to make sure I'll be adherent.  I wish I would have been started on a complete regimen in the hospital and just stayed on it.  I hate debating when the right time is to start.  I know that is a luxury so many didn't/don't have. 

There is obviously a psychological element to having this virus and not having to take meds yet vs having to start.  Not having to start makes me, at least, think my body hasn't totally been defeated just yet and I'm still in control as to when to start.  I'm worried I've gotten too use to having this virus and not having to take meds.  I worry that when my numbers indicate meds need to be started, it is going to be depressing.  I'm trying to prepare myself for that by telling myself I got a few years reprieve and I should be thankful for that.  I think I will feel much better once I do start and believe I will be asking myself why I waited.  My mom has to take meds the rest of her life in order to stay alive.  She just takes them and never had any concerns about it.  I realize the meds she has to take aren't the same as HIV meds.  She had a heart valve replaced and has to take Coumadin the rest of her life as well as some other meds.  She has to go give blood every month to check her INR (whatever that is) to make sure her blood isn't too thin or thick.  If it gets too thick, she would have a heart attack more than likely.  So while her situation isn't exactly the same, I'm trying to get inspiration from her. 

I've asked docs whether HIV meds have gotten a bad rap due to the older meds, and whether HIV meds are really anymore toxic than most other meds on the market.  If they aren't, then there needs to be a campaign educating folks that they aren't that much different from all the other meds where you see commercials saying you could have kidney or liver toxicity or death from some cholesterol med or osteoporosis med.  I never get a good answer whether they are really that much different from most other meds.  When you aren't in immediate need to start HIV meds, then I think many start weighing all these things.  Again, I realize that is a luxury many don't have. 

Offline aztecan

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Re: Fear of starting medication
« Reply #20 on: March 30, 2011, 01:37:24 AM »
I actually did have a choice when the discussion of meds came up.

I had been positive for 11 years, my numbers were beginning to tank, but were still above 400.

My doctor, wonderful person she was, sat me down during an appointment in January 1996. She asked , "Do you want to be aggressive, or do you want to wait until you get sick and we have to make up for lost ground."

A no-brainer for me.

She also said the meds were very new and nobody knew what the long-term side effects might be.

She was a great doctor. She is now practicing in Houston, I think.

I actually waited until March to start because, in those days, the meds were in limited supply and she wanted to make sure I could get them.

I never feared the meds, I feared not having them.

Kinda makes me thankful for my humpette.

HUGS,

Mark
« Last Edit: March 30, 2011, 01:50:19 AM by aztecan »
"May your life preach more loudly than your lips."
~ William Ellery Channing (Unitarian Minister)

Offline wolfter

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Re: Fear of starting medication
« Reply #21 on: March 30, 2011, 07:36:17 AM »
My only meds anxiety after being diagnosed was when are they going to have meds available to treat this disease.  AZT sucked, but at least I'm still around to talk about how it sucked.  Great post.

Greg
Judging someone does not define them, it defines you. 

True peace is not merely the absence of war, it is the presence of justice.

Offline pozniceguy

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Re: Fear of starting medication
« Reply #22 on: March 30, 2011, 10:36:13 AM »
I  was in the "cant wait" category  went to hospital for PCP  Dr's  told family to make final preparations  and the HIV  Dr  said he wanted to be "very aggressive"  since my CD was 2  and VL  was not an item that they could calculate..   so began the saga of the earliest meds lots of potty time  and being in bed so weak that I was down to  130 lbs from 180....   once the crixivan came along got a lot better quickly...along with a few other things  including many Blood transfusions to regain red blood cells levels......  been on prezista  since it came available and doing fine ever since    never a "choice"  about taking meds only  which one to take and when....


Nick
remember the good times...honor the past but don't live there
Le stelle la notte sono grandie luminose, nel cuore profondo del Texas

Offline mecch

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  • red pill? or blue pill?
Re: Fear of starting medication
« Reply #23 on: March 30, 2011, 01:01:30 PM »
Let's see:

What was promised to me:

HAART - rapid control of raging hiv infection.  Stay "healthy".  Stay working. Keep my daily life.  Good life longevity.  Country guarantees health care.  Maybe some side effects.

NO TREATMENT - AIDS. Death.


That was the info on the table in the doctor's office.




“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline poglip

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Re: Fear of starting medication
« Reply #24 on: March 30, 2011, 04:45:04 PM »
Thanks GSOgymrat This was a real help Pal.
Infected        Feb    2010
Negative test  March 2010
Tested Positive May 2010
VL 7568 CD4 465 21%
Sept 2010
VL 26512 CD4 434 18%
Dec 2010
VL 152669 CD4 308
Mar 2011
VL 251539 CD4 226 9% Started Atripla
Apr 2011
VL 256 CD4 256 11%
July 2011
VL Undetectable CD4 346 21%
23 Oct 2011
VL Undetectable CD4 199 17%

Offline mecch

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Re: Fear of starting medication
« Reply #25 on: March 30, 2011, 05:14:11 PM »
And I am still angry and sad about Emery's death.  How did he not get this memo? I mean we know he got the memo, here, but how could someone be surrounded by people who couldn't cut through the crap and get him to surmount the fear of HAART? In this day and age.

I get that everyone is an individual and has the right to control over their own destiny.  Medically proven progression of HIV, left untreated, when we have the treatment - it seems both suicidal, and yet something more than suicide. Its a social failing somehow.
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline Cliff

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Re: Fear of starting medication
« Reply #26 on: March 30, 2011, 05:24:04 PM »
Good post Gym.  For those new to HIV.  Meds are, mostly, good, if boring.  But the older I get, the more I realise that boring is good.  Damn good.

Offline newt

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Re: Fear of starting medication
« Reply #27 on: March 30, 2011, 05:29:23 PM »
Good thread, good posts, I too was petrified* but did it, and was pleasantly surprised, felt better, then bored, am now bored by taking HIV meds, in the same way I am not a major dinner party conversationalist about putting n clean socks, I just do it, get on with life.

- matt


*but first I was afraid
"The object is to be a well patient, not a good patient"

Offline GSOgymrat

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Re: Fear of starting medication
« Reply #28 on: March 30, 2011, 05:45:34 PM »
And I am still angry and sad about Emery's death.  How did he not get this memo? I mean we know he got the memo, here, but how could someone be surrounded by people who couldn't cut through the crap and get him to surmount the fear of HAART? In this day and age.

I didn't know Emery (etay1207) had died. For those who are new here he was someone who decided not to take HIV medications. I was quite angry with him because he wouldn't listen to reason and it was obvious his story was going to end like this. Such a senseless death.

Offline manc

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Re: Fear of starting medication
« Reply #29 on: March 30, 2011, 06:13:00 PM »
I was sorry to hear about Etay as well. Saw his posts here and it's sad to hear the news about such a young guy, with the meds available now.

So the thread is a timely reminder really - I started meds 18 months ago and I was scared, not knowing how I would handle them and any side effects. Even so, I had been asking my Dr for treatment for at least a year before getting it. Waiting to take them was really frustrating. I knew that it would be a big deal for me at first, but wanted to get over that, get my viral load under control and get on with my life. Which I have, pretty much, and they are keeping me healthy. ;D

The contrast with peoples experience just a few years ago with the early treatments doesn't bare any comparision, but may explain some of the fear.


Offline DanMo

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Re: Fear of starting medication
« Reply #30 on: March 30, 2011, 06:15:35 PM »
I'm newly diagnosed and I immediately started researching treatments because I knew HIV slowly progresses to death.

I think many people balk at having to start meds not only because of the side effects, but by starting meds, having HIV becomes "real". You can't ignore it.

I know I will start treatment as soon as I can, but to have it become REAL by taking meds is a hard thing to accept at the beginning.

Thanks for posting about this GSO, I really liked the comments.

Dan
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Online heartforyou

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Re: Fear of starting medication
« Reply #31 on: March 30, 2011, 06:31:03 PM »
My meds history is a "do or die" also ...

It felt like jumping from rock to rock in a raging river. Somehow I managed to get to the other side form AZT....


Good post ...

xxx Hermie
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Online tednlou2

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Re: Fear of starting medication
« Reply #32 on: March 30, 2011, 11:35:09 PM »
When did Etay die?  With him being banned, how was this learned?  I, like all of us, had a feeling this would happen, but I thought once he got sick, he or others would choose the meds and bring him back.  But, he obviously still refused them or it was too late.  He had been complaining about heart issues, right?   

Would it be in bad taste to use his story here or for someone to write a story about it for poz magazine using his posts (or at least his general views), but protecting his identity?  I suppose what we post here should just be between us, but he was very vocal on denalists forums and was open about his views in youtube posts.  I think his story would help those who feel like he did.  His unfortunate death could help save someone else.  If nothing else, I wonder whether his fellow denalists know he died??

Anyway, I am very saddened by this news.  I knew it would eventually happen, but I guess I thought it would take a little longer.  But, his numbers were really bad.  It really is such a shame.  His partner took meds, so it seemed odd to me that he couldn't see how the meds were helping him. 

Offline leatherman

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Re: Fear of starting medication
« Reply #33 on: March 30, 2011, 11:41:18 PM »
When did Etay die?  With him being banned, how was this learned? 
Tim announced Emory's passing with this post: In Memoriam / Emery Taylor, 1980 - 2011
leatherman (aka mIkIE)


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Online tednlou2

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Re: Fear of starting medication
« Reply #34 on: March 31, 2011, 12:19:38 AM »
Tim announced Emory's passing with this post: In Memoriam / Emery Taylor, 1980 - 2011

Thanks, Mike.  I guess I should check out that forum more often.  I read the story about him and the link to his FB account.  It is interesting that in the days leading up to his death, he sounded okay in his posts.  I would have thought he wouldn't have felt good enough to even post on FB.  Well, it is just sad to hear.  I'm saddened to hear his partner, after seeing what this virus does, says he wants to carry on his legacy and look for non-pharm ways of treating HIV.  Even the person who wrote the story bascially says not taking the meds was responsible, but still seems to believe ARV's are the problem.  However, I got a sense he was scared by this, because he mentioned his medical issues almost mirrored Etay's in the last few months.  I did not know him personally and maybe had 10 exchanges with him in threads and PMs, but I am very saddened by this.       

Offline poglip

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Re: Fear of starting medication
« Reply #35 on: March 31, 2011, 03:00:06 PM »
On my fourth day of Atripla and i too was Debating starting the Meds, I see my self as lucky that i have not been through the dilemma's many people who post on here have, but only having been DXD recently I was completely unprepared for the progression of the virus from infection to needing meds (13 months) but information that the councilors give you sometimes just isn't enough, you need information from those who have been through what your about too , i got more relevant information from this forum in two weeks than twelve months of reading Pamphlets and medical HIV sites, Thanks Again Keep up the good work.
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VL 7568 CD4 465 21%
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Mar 2011
VL 251539 CD4 226 9% Started Atripla
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Offline mecch

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Re: Fear of starting medication
« Reply #36 on: March 31, 2011, 04:55:04 PM »
When did Etay die?  With him being banned, how was this learned? 
You can do a google and learn more about the back story on Etay.  The bf seems to have a highly individualised commitment to HAART.
Also, I don't think he was ever banned here. There was talk at first but a lot of us stuck up for him because in fact he wasn't in AIDSMEDS to preach his denialism which he pursued elsewhere. He played fair enough.


“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline mecch

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Re: Fear of starting medication
« Reply #37 on: March 31, 2011, 04:59:10 PM »
I think many people balk at having to start meds not only because of the side effects, but by starting meds, having HIV becomes "real". You can't ignore it.

I have heard this explanation from many, and I can empathize and it makes sense to me that others might feel this way.  What they overlook is that many many many people who take HAART have quite the opposite experience. They were fretting and anxious about HIV when they were NOT on HAART, every thing was a sign that the end was near.   And are now thrilled with the benefit of HAART because when you go undetectable, it really clears up a lot of dark clouds.  The future seems bright and clear.  Many many many people report this.  So.
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline Dachshund

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Re: Fear of starting medication
« Reply #38 on: March 31, 2011, 06:22:05 PM »
Thanks, Mike.  I guess I should check out that forum more often.  I read the story about him and the link to his FB account.  It is interesting that in the days leading up to his death, he sounded okay in his posts.  I would have thought he wouldn't have felt good enough to even post on FB.  Well, it is just sad to hear.  I'm saddened to hear his partner, after seeing what this virus does, says he wants to carry on his legacy and look for non-pharm ways of treating HIV.  Even the person who wrote the story bascially says not taking the meds was responsible, but still seems to believe ARV's are the problem.  However, I got a sense he was scared by this, because he mentioned his medical issues almost mirrored Etay's in the last few months.  I did not know him personally and maybe had 10 exchanges with him in threads and PMs, but I am very saddened by this.      

His passing, as sad as it might be was a painful lesson everyone should be made aware. Don't forget he was a member in good standing in a denialism forum. He didn't question their beliefs (or science) as he did here. He didn't ask for their understanding that there might be a different way to treat AIDS like he did here. His passing simply proves the danger of this philosophy.

Offline Miss Philicia

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Re: Fear of starting medication
« Reply #39 on: March 31, 2011, 06:38:05 PM »
His passing, as sad as it might be was a painful lesson everyone should be made aware. Don't forget he was a member in good standing in a denialism forum. He didn't question their beliefs (or science) as he did here. He didn't ask for their understanding that there might be a different way to treat AIDS like he did here. His passing simply proves the danger of this philosophy.

Exactly, and it's not like Etay was a particularly special case except for the fact that he interacted with people on this forum.  If you're going to grieve for him you might as well grieve for the entire denialist community.  Maybe this is harsh of me but I find it hard to do so.

Basically they're a bit like a climate change skeptic -- makes no difference how many scientific facts and studies you throw at them they're not going to change their minds even when the surrounded by brush fire.
"I’ve slept with enough men to know that I’m not gay"

Offline Hellraiser

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Re: Fear of starting medication
« Reply #40 on: April 01, 2011, 02:32:20 AM »
Exactly, and it's not like Etay was a particularly special case except for the fact that he interacted with people on this forum.  If you're going to grieve for him you might as well grieve for the entire denialist community.  Maybe this is harsh of me but I find it hard to do so.

Basically they're a bit like a climate change skeptic -- makes no difference how many scientific facts and studies you throw at them they're not going to change their minds even when the surrounded by brush fire.

It's different only because we had personal interaction with him.  As I said before it just felt like we were watching someone commit suicide and could not dissuade him.  I don't hate anyone enough to let them do this to themselves without feeling something that borders on regret and helplessness.

Offline David_CA

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Re: Fear of starting medication
« Reply #41 on: April 01, 2011, 08:48:49 AM »
Honestly, I can only conclude that when people state 'their knowledge' that flies in the face of real facts that either they are in denial or just plain stupid.  I would say they could just be uninformed, but that wasn't the case with Emory. 
In the 'In Memoriam' forum, I said
Quote
I guess what we have to realize that, perhaps, some people's biggest problem may not be HIV / AIDS but their refusing to actively fight it.  How do we make somebody accept that they need to start meds and take this seriously?  Maybe dying from AIDS complications is easier for them than knowing they are HIV+ and living with it.
I guess I just don't understand people's inability to accept and deal with things in life.  For me, being HIV+ is nothing I'm ashamed of any more than I'm ashamed of being gay.  Both carry baggage, both can get you killed (fag bashing, etc), both can make life more difficult, etc.  I keep both fairly private, but I'm not in denial of either and pay a price for both.  I suppose that price is too high for some to afford.  Like with something we buy on credit and don't pay, there are penalties.  In the case of HIV, that penalty is generally death.  It's so avoidable and so sad.  Know yourself, embrace yourself, and take care of yourself.
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Offline Grasshopper

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Re: Fear of starting medication
« Reply #42 on: April 01, 2011, 09:40:32 AM »
I would say they could just be uninformed, but that wasn't the case with Emory. 

Beats the Hell out of me; the WHY.
I recognized his behaviour and that's why I didn't attack or tried to coerce him like most of you did.
What I recognized : my Mom's sister a successful oncologist and surgeon died of breastcancer in November 2007. She knew what she had, but yet refused chemo or surgery. We all talked till we were blue in the face to no avail. At her funeral there where present many of her ex-patients who survived thanks to her skills, who kept asking why why why ?

Sometimes you just have backoff, and swallow someones decision.

Offline Miss Philicia

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Re: Fear of starting medication
« Reply #43 on: April 01, 2011, 10:31:17 AM »
It's different only because we had personal interaction with him.  As I said before it just felt like we were watching someone commit suicide and could not dissuade him.  I don't hate anyone enough to let them do this to themselves without feeling something that borders on regret and helplessness.

Trust me -- spend an entire afternoon reading that no-to-be-linked-to AIDS denialist web forum and you won't feel sorry for any of them.  It's not an issue of "hate" and I don't know where you are picking that up from me.  I don't hate someone that chooses that look at HIV in that manner, but I know hitting my head against a brick wall for any length of time isn't helpful.  IIRC before I was about to dive into the pool with Emery I was clued into the fact that his youtube channel was just the tip of the iceberg, and that he was a heavy participant in that other web forum, so I just never bothered with him.
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Offline Dachshund

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Re: Fear of starting medication
« Reply #44 on: April 01, 2011, 11:51:33 AM »
Unfortunately I've seen this play out up close and personal. My best friend died from histoplasmosis over two years ago. He wasn't a denialist, but sincerely believed the meds were toxic so why bother. He was handsome and appeared healthy a mere ten days before he was admitted to the hospital and died. There hadn't been a case of histo in Memphis for over ten years and it took the doctors too long to diagnose before he died. I tried everything I could to get him to change his mind to no avail. I'm still hurt and yes, angry that he had to die that way. But in the long run that was his choice. I don't want people like Etay suggesting that this is a viable, healthy choice. It wasn't as easy as putting someone on ignore.
« Last Edit: April 01, 2011, 11:53:07 AM by Dachshund »

Offline skeebo1969

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Re: Fear of starting medication
« Reply #45 on: April 01, 2011, 02:44:06 PM »



   The problem I have with Emery's situation stems from my own perception.  Big smile, full of life, people who seemingly loved him, and a humble pride that I admired;  it gave me the impression that dude loved his life.   However,  I exchanged PM's with Emery and  gathered from them he was nothing more than a die-hard denialist, plain and simple.

  He was banned.  And looking back on it, I totally agree with the decision to do so.  We have a lot of smiling, full of life people here who upon first arrival after diagnosis can fall into Emery's line of thinking.  We didn't need someone like that here throwing that information around privately, or questioning publicly in the forums the advice we give.

  I don't know, part of me thought he would come around.  I think some here shared that belief.  Instead, I received another example of how dangerous denialists are. 

  I just can't understand why he held onto these beliefs to the very end with those two little boys looking up to him. 
I despise the song Love is in the Air, you should too.

Offline Miss Philicia

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Re: Fear of starting medication
« Reply #46 on: April 01, 2011, 03:01:06 PM »


   The problem I have with Emery's situation stems from my own perception.  Big smile, full of life, people who seemingly loved him, and a humble pride that I admired;  it gave me the impression that dude loved his life.   However,  I exchanged PM's with Emery and  gathered from them he was nothing more than a die-hard denialist, plain and simple.


I always thought that not only was he a hardcore AIDS denialist, but that he was actually trolling this forum.  There was simply no other way ro reconcile his posts on "that other forum" with the ones here.  Frankly I was surprised that he was allowed to post here as long as he did.
"I’ve slept with enough men to know that I’m not gay"

Offline skeebo1969

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Re: Fear of starting medication
« Reply #47 on: April 01, 2011, 03:33:18 PM »
I always thought that not only was he a hardcore AIDS denialist, but that he was actually trolling this forum.  There was simply no other way ro reconcile his posts on "that other forum" with the ones here. 

I agree.  You've probably had more run ins with these types than I, so you're able to recognize it better.   I swayed back and forth like a fool, thinking he would come around.  What a slap of reality that was.
I despise the song Love is in the Air, you should too.

Offline Sweet_C

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Re: Fear of starting medication
« Reply #48 on: April 01, 2011, 08:57:24 PM »
Beats the Hell out of me; the WHY.
I recognized his behaviour and that's why I didn't attack or tried to coerce him like most of you did.
What I recognized : my Mom's sister a successful oncologist and surgeon died of breastcancer in November 2007. She knew what she had, but yet refused chemo or surgery. We all talked till we were blue in the face to no avail. At her funeral there where present many of her ex-patients who survived thanks to her skills, who kept asking why why why ?

Sometimes you just have backoff, and swallow someones decision.

OT:  but I can understand your mother's sister's decision, because the treatment for any kind of cancer is extremely painful and you get virtually no quality of life.  There's no guarantee that you will survive.  There quite a few cancer patients who just opt to live the rest of their days without treatment, and many survive longer than they would hav.e and with a better quality of life than those who opt for treatment.  She probably was well acquainted with the negative eeffects and chose not to endure it.

But for HIV, it's so sad.  Most people have few, if any side effects from the drugs and  they are 100% effective in controlling the virus.  Even for the people who do have side effects, they are as bad as they are, they are not any where near as bad as chemo
Tested positive on September 11, 2008

Offline Sweet_C

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Re: Fear of starting medication
« Reply #49 on: April 01, 2011, 08:58:58 PM »
Tim announced Emory's passing with this post: In Memoriam / Emery Taylor, 1980 - 2011

Goodness, he was so young!!  I wondered if his family knew of his status and his decision not to take meds.  I couldn't imagine...
Tested positive on September 11, 2008

 


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