I DON'T WANT TO TAKE DRUGS!

[B99]

I've reached yet another emotion in the short time since I have been diagnosed.  I reported to you all my numbers on my last post.  Though my Viral Load went (212k to 47k) and my percentage increased (30 to 32) my absolute CD4 still decrease (470 to 430).  I'm not on any drugs now, but it's only a matter of time.
I took a resistance test at my last visit and SHOULD HAVE BEEN scheduled for an appointment next week to find out the results.  I, however, have yet to schedule my appointment. I, honestly, don't want to go.  Since I have left the doctor's office a month ago, I have RARELY thought about HIV.  I go to work, I hang out with my friends and family and I live my life.  And right now, for me, this HAART/drug resistance/side effects business is producing a level of anxiety in me that I don't know if I am able to deal with or control.  If this is what life is like expecting to go on drugs, what is life like on them?  Constantly worrying about drug interactions, organ failure, drug resistance, side effects, pay for the drugs.  At my highest points, I figure it will all be worked out.  At my lowest points, I think I would rather be dead.
I suppose I will get up and schedule my appointment (probably some time next week).  But right now, in this low point, I don't want to deal with this shit.  I wish something would just take me quickly on my couch right now.  I'm meant to die, why prolong the inevitable just to deal with all the bullshit?  I'm anxious, scared and confused.  AND I CAN'T STAND BEING THIS WAY!

[Christine]

When I was first diagnosed, I went through horrible anxiety attacks. I was in denial, just wanted to live without the hiv. I would cancel doctor appointments, hide in my bedroom closet hysterically crying...it was a horrible time.

Looking back, I wish I would have joined a support group or talked to a therapist about the anxiety I was experiencing.

What you are going through right now is pretty common. You had a life altering event, and now the reality of all of it is hitting you. I would suggest talking to someone about it. Your numbers don't require you to start meds right now. Why don't you work on the emotional part of dealing with the hiv.

I would also suggest keeping your doctors appointments, you want to make sure your health remains stable.

Things really do become better. Take one day at a time.
Christine

[MSPspud]

Spending time worrying about things you cannot change is futile.  Eventually you'll need drugs but from your numbers and % you'll more than likely have plenty of time to prepare.  From my personal experience, I think the anxiety of waiting is much worse than actually being on the drugs.  More so, if you have no resistance, you're first regimen won't be very toxic, which if you're adherent, should get you to the next stage of drugs which could be even less toxic.  Yes, this will all work itself out!

Today, I am on meds, but spent a good 3 or 4 years in waiting.  I have to say for the most part I feel like I did before... perhaps less worn out then when I wasn't controlling my virus.  Chances are meds will do this for you too.  Please don't let others negative experiences scare the crap out of you.  We're all different!  For me it took getting on the meds to realize this AND in the end I am glad I took the plunge.

[Cliff]

I go to work, I hang out with my friends and family and I live my life.

Being HIV positive and on meds, shouldn't change any of that.  Are you going to a counselor or going to a group support?  It may be beneficial. 

Constantly worrying about drug interactions, organ failure, drug resistance, side effects, pay for the drugs.

Well I was only on meds for about 1.5 years, but I don't remember constantly worrying about any of those things.  Experiencing side effects was a concern, prior to starting my meds, but the actual side effects I experienced were easier than what I thought they would be.  And, more importantly, they were manageable.

You have plenty of time to think things over.  I don't think you are close to being on meds anytime soon.

[Moffie65]

Hey "B"

Who says you must take medications?  This is a choice, and one that only you can make.  I lived in denial/exasperation for 11 years.  There were not any tests to tell me what my vl was, what my CD4s were, or in fact if I was really HIV+.  (Yes, the test came out in 1985, but with the only alternative being AZT monotherapy, I chose not to know for sure) 

The choice of not taking drugs will give you about 10 years if you stay active, take care of your health, and move on with life.  Then the Opportunistic infections will set in, and you will be forced into yet one more decision.  Do you go to the hospital and fight for life, or do you lay on that couch and wait for the 6 months to three years of misery and floating in and out of consiousness, shitting and barfing all over yourself, waiting for that very protracted death we all know and love.

I am not trying for one second to be dramatic, nor cynical here, just letting you know the facts, so that you can make an informed choice.  If you would like to know more details about fighting for sanity/life/and health, please answer this post and I will be glad to go into very explicit detail about some of the ways many of the 186 people I have buried, dealt with a very miserable death.

In Love and Support.

[aztecan]

Hey B,
If the docs are right, I went 16 years without meds. (That is based on when they think I was infected.) Even if not, I went 11 years from the time I tested positive before starting meds.

Its a good thing I managed to hang in there that long, because we didn't have much to work with - monotherapy mostly.

Right now, your numbers are OK, your percentage is good and you don't have to worry about staring meds tomorrow or, most likely, in the near future.

The anxiety you are feeling is is understandable. I think it is something everyone with HIV felt to some degree, at least those who found out they were positive after meds became available.

I agree with the others. Get into a support group or counseling and talk this out. Face this fear of yours. Only then will you be able to take control of your life, rather than letting the virus dictate what your life will be.

Above all, remember you aren't alone.

HUGS,

Mark

[Batboy]

I felt the same way. I went for three years from the time I was diagnosed without needing meds. Just at about the time I was able to fully deal with being poz, without going into a major anxiety attack, my doc tells me it's time to start meds.

It was like going through the whole diagnosis adjustment all over again. The fact that I would need to start meds, the resistance testing...it all felt overwhelming. The anxiety was paralyzing at times.
It's been about three months since I started meds and i have to say nothing has changed in my life. initially there were some side effects that were frightening, especially that first dose. I must have picked up those pills, put them to my mouth and then placed them down again over and over for more than an hour before I finally swallowed them.

The fist night of severe dizziness and strange thoughts was scary. The following days of anxiety attacks and sudden feelings of fear, tremors in my legs and hands, etc. made me think I would stop the meds. After a week, most of the side effects disappeared...after two weeks, they were pretty much gone completely. I was able to continue to work during the day for those fist few weeks with little problem or discomfort.

Now, after only three months, it seems like I'm taking anything at all. My t cells have nearly doubled and my vl is undetectable and I feel normal for the first time in a long time. Just before bed I take a couple of pills and go to sleep, wake up the next morning feeling just fine. I am able to be active, do everything I ever did before. Meds don't always have a big impact on your life.

So, don't decide now that you won't take meds. When the time comes, try them and try to stick it out for that initial period while your body adjusts to them. You may find that it's not difficult after a while. Most of the current meds have fewer side effects than they did years ago and, if you start them early enough, chances are you could do the popular sustiva/truvada combo which is the easiest to adjust to and very effective.

[J.R.E.]

Hello B,

First of all, I just want to say , that I know what you are experiencing and going through. Don't think that you are the only one that feels this way, or have felt this way. There are plenty us that have been there. I went through this myself. And it was a tough learned lesson.

Starting meds is never easy. I have stated this before, but will say it again. All the years that I have lived with this virus,( 21 total), I really believed that when the time came for starting on medication, that I would be ready. 17 plus years into this infection, and I found out that I wasn't ready, and as a result, held off from starting on meds, until I got myself deathly ill.


I wouldn't want to see you get that way. It was a very tough year,( that year leading up to medication in 2003. Thrush, 30 pound weight loss, chronic fatigue, Pneumonia. Having to go to the hospital. Looking like death.


This can all be avoided, and put off for a long time, by getting started on the meds, when that time becomes right. But, it has to be right for you, and only you can make that decision.


I was also cancelling appointments, and then got to the point, where I stopped going to the doctors completely, because I thought I was doing fine !! Sure, I was feeling great,I was happy,going out seeing friends... was certainly not thinking about HIV 24/7. I was  and still am working. But I can't stress to you enough, of keeping those appointments, and keeping your health monitored. Its too easy , to fall through the cracks. There are too many people already falling through the cracks, and this doesn't have to happen.


I wish you the best. Keep talking about your concerns, Make sure to bring these concerns up with your doctor. Let him know your fears.


As far as side effects from the medication ( which is probably your biggest concern) not everyone goes though gut wrenching side effects. Thats not to say that these meds are easy either. I was fortunate enough to get started, and have very little side effects from the meds.But, in the longrun, YOU are the one, that will have to make that decision, and you are the one that will have to be comfortable at making that decision. I just don't want to see you get sick, believe me, its not worth it.


Take care of yourself/Stay healthy/ keep in touch------Ray

[Eldon]

Hello B99, it is Eldon from the family here. I went (16) sixteen years without taking medication. Just recently earlier this year I started my regimine. At first I was concerned mainly about the toxicicity of the meds not the side effects.

I finally sat down with my former therapist and we talked about it. The end result was it boiled down to me making the choice to take the meds. As I simultaneously found out my CD4's were at an all time low, the possiblity of OI's, and other health issues poping up, I then made the decision to committ to take my meds as prescribed by my doctor.

Please do heed the advice that we are giving you here. We have been through it and we are only trying to help you side-step going through the same thing. Your health is the most important thing. The sooner you suppress the virus and start treatment all the better. You do not want to get sick.

Have a seat with your Doctor and express to him what you are going through and he will explain it all to you just as Ray has said.

[Matty the Damned]

B,

Like the others I understand exactly where you're at babe. I'm not on medications at the moment and I'm wrestling with the decision too.

It sucks.

Don't feel pressured. Your numbers are pretty good. Your % is very good. You can take your time and think these things through. Talk with your medical people. If you're not ready to take HAART, then you shouldn't because it's gotta be taken properly or not at all.

I learned from that simple mistake.

Fondly,

MtD

[Jeffreyj]

I am all for sucking it up and taking the drugs. I have always, from the very beginning
(1984 for me) always "trusted the science". By doing this, it was a huge weight off my shoulders, and it enabled me to spend my brain cells on the more emotional issues that come along with hiv/aids. What can I say? It has worked, I'm still here and damned healthy. Once you get used to the side effects, there are really not that bad.If you stay in a positive mind set and keep busy they have been totally manageable for me. And don't forget, people on here rarely post when they are feeling good. So it may seem a little bit worse then it really is! Just my thoughts....are you thoroughly confused now? LoL. Welcome to the world of the hiv.

[jkinatl2]

hey, I have been on a drug holiday since October of last year. I've had all the side effects, from the Ziagen rash to the Sustiva psychosis to the nonstop runs from Kaletra, Norvir, and all the rest. Oh yeah, and the fatigue from Virammune, anemia from AZT, et al.

Its been a fascinating ten years as a lab rat. Often, the side effects I experienced were from drugs SO new to the market that I was actually PART of the control group that dictated the warning labels for future generations.

Yay to be me.

I am waiting until better stuff comes along. With the one-pill a day Aptiva, I am confident that future med treatment combos will be developed. It's not just about taking pills every day. Its about not feeling like crap every day.

At the moment, I do not feel like crap every day. Which is more than I have been able to say for most of my drug-taking time.

I totally understand your reluctance.

[HIVworker]

It appears that taking drugs is like a rollercoaster ride. Once you are on you can not get off and both leave you feeling like throwing up

R

[Matty the Damned]

I am all for sucking it up and taking the drugs. I have always, from the very beginning
(1984 for me) always "trusted the science". By doing this, it was a huge weight off my shoulders, and it enabled me to spend my brain cells on the more emotional issues that come along with hiv/aids. What can I say? It has worked, I'm still here and damned healthy. Once you get used to the side effects, there are really not that bad.If you stay in a positive mind set and keep busy they have been totally manageable for me. And don't forget, people on here rarely post when they are feeling good. So it may seem a little bit worse then it really is! Just my thoughts....are you thoroughly confused now? LoL. Welcome to the world of the hiv.

Good for you Jeffrey! I wish we all had your strength of character!

That to one side, I "sucked it up" like our friend here and it was really difficult and I wasn't ready to do it and I've ended up with viral resistance to a number of drugs. I must be unworthy. B - your experience will most likely be different.

B. you've gotta do this in your own time and at your own pace. You've got pretty good numbers. Take some time and make sure you're ready.

MtD

[blondbeauty]

I am probably about to start meds next monday. This is the reason for an anxiety attack I had a few days ago that made me leave the plane (flight attendant) and seek for medical help.
It may seem weird but I am willing to start meds and at the same time this causes me anxiety...So I understand your case even more as you donīt want to start them.
But I can feel I am going to do very well on meds and so should you.
Anyway you donīt need them right now, but donīt cancel your appointments with the Dr. Medicine, drugs and Drs. are here to help you. The only enemy here is HIV.