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Author Topic: Can someone please explain...  (Read 5008 times)

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Offline justice3175

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  • Posts: 24
Can someone please explain...
« on: November 13, 2007, 04:09:38 PM »
i was diagnosed in 2002 with a cd4 count of 50.
Started medication for a year, bringing my count up to 200.
Been off meds for a little over three years, and last time i checked (a year and a half ago), my numbers were at 90.
I have never been in the hospital.
i have never had any serious effects or complications. (except when i was on meds)
My doctor (in California) was baffled that i have never been hospitalized. He theorises that I have the bubonic plague survivor's gene.
I have a full time job which entails me to running around on my feet for 8 hours, as well as lifting heavy equipment, and the only "tiredness" I feel is when they schedule me 16 days in a row.
i've been reading many posts on this sight, and from what I've read, my situation is not normal.
i feel perfectly healthy.
Is this common for someone with my numbers?

Offline cubbybear

  • Member
  • Posts: 510
  • Joined August 2005.
Re: Can someone please explain...
« Reply #1 on: November 13, 2007, 04:14:15 PM »
The virus effects everyone one of us differently. 

Some people can go years with low cd4 counts and not become sick.. others cop it with higher counts.  It's only a matter of time though before something rears its ugly head.  I didnt get unwell until my counts were below 100.

Cheers
Matt
There's a bear in there!
Positive since 2000
Diagnosed 17/9/2005 CD4 35 VL 293,000
Meds 23/9/2005 Sustiva/Truvada
Currently CD4 232 VL Undetectable

Offline thunter34

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  • His name is Carl.
Re: Can someone please explain...
« Reply #2 on: November 13, 2007, 04:39:13 PM »
Your numbers were at 90 a year and half ago?! 

Point blank:  I don't care how fine and dandy you're feeling.  You need to get yourself checked up immediately.

AIDS isn't for sissies.

Offline gpete

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Re: Can someone please explain...
« Reply #3 on: November 13, 2007, 04:48:21 PM »
I have KNOWN I've been poz for 20+ years and have NEVER been ill period!    I've only been on HIV meds for about 3-4 years.    When I started meds my cd4's were like 126 and my viral load was WAY up there.    Presently my cd4's are in the 360's and my viral load is u/det.    I too,  had a job that had me on my feet for 12 hr shifts with alot of running back & forth from different departments    Often I'd be tired but nothing that a few hours of good sleep couldn't cure.    When I got the news that my cd4's were so low I was told by the PA that I'd HAVE to go on SS in order to afford my meds....she said I wouldn't be able to afford the copay.    She didn't know what my job was or that I had insurance but I heeded her advice and applied for SSI.    I feel that I might have some gene that has helped me head off the virus but I don't know what kind of test could be done to determine that.    I'm also a smoker and I drink my share of beer usually a couple of times a week.     My advice to you would be to keep working IF you enjoy your job and can safely perform your duties BUT also stay on top of your numbers etc.    Keep thinking the GOOD thoughts and may you have MANY more HEALTHY years!

Offline dixieman

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Re: Can someone please explain...
« Reply #4 on: November 13, 2007, 04:48:34 PM »
Well to answer your question a good friend of mine whose been deceased for 6 years now... did not find out he was positive till he went into the hospital for pcp... when the hospital checked his viral load... cd4 count after he tested poz... he was at the number of 2 cd4's... he was never sick... he was in his late 50's and ended up in the hospital with pcp... he recovered and lasted 4 years with crix... the pcp came back and he never left the hospital... dead within two days upon arrival.. I miss him... he was a hoot! so who knows how many years he had been poz... but, his body and immune system never recovered... I suggest go get checked and stay monitored by your doctor...

Offline woodshere

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Re: Can someone please explain...
« Reply #5 on: November 13, 2007, 04:54:58 PM »
Perhaps you're a living miracle, however I wonder why one would go off meds at CD4 of 200 plus not have numbers checked for 18 months?  I would follow thunter's advice.
"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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  • His name is Carl.
Re: Can someone please explain...
« Reply #6 on: November 13, 2007, 05:08:43 PM »
I swear.  You people are gonna make my heart palpitate and my blood run all high.

Seriously, Justice....please see a doctor.  Sent you a PM.
AIDS isn't for sissies.

Offline pozattitude

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Re: Can someone please explain...
« Reply #7 on: November 13, 2007, 05:33:24 PM »
Thunter is right on.....PLEASE DON"T IGNORE YOUR NUMBERS!!!!!!!!!
It is great that you are healthy but you want to keep it that way...don't wait until your immune system crashes before you seek medical help, there is something called "immune reconstruction syndrome" (if I am not mistaken), which will make a bad day of meds side effects seem  like a walk in the park.
I lost a friend because he didn't like to take pills, I miss him a lot, please...don't follow his footsteps.

Rich
POSITIVE PEDALERS... We are a group of people living with HIV/AIDS, eliminating stigma through our positive public example.

Offline Miss Philicia

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Re: Can someone please explain...
« Reply #8 on: November 13, 2007, 05:39:31 PM »
I'm always astounded at the many stories I read here where people, who tempted fate once by getting infected, tempt it again by going off of HAART.  What's worse is not even seeing a doctor to know if you have... like -- 3 t-cells.

I'd suggest, in addition to going to see your medical doctor, also addressing these issues that reek of denialism-lite with a psychiatrist.
"Iíve slept with enough men to know that Iím not gay"

Offline Matty the Damned

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Re: Can someone please explain...
« Reply #9 on: November 13, 2007, 05:53:17 PM »
Justice,

You should do whatever you want. Matty the Damned cannot lecture others about taking medications and seeing doctors and whatnot. He's notoriously bad at that stuff.

But let me tell ya, HIV will also do whatever it wants. Trust me, you won't be able to continue on like this indefinitely. At some point (and that point is coming soon babe) you will crash and burn. Let's hope whatever it is that puts you in hospital can be treated.

Regards,

MtD

Offline newt

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Re: Can someone please explain...
« Reply #10 on: November 13, 2007, 06:01:02 PM »
Being ill requires a working immune system to show a response, and you ain't got one.

My friend ended up in hospital with PCP and a boil the size of a tennis ball on his arm, came up in 2 days, nowt to say he was ill, didn't feel ill, just tired...

Less dramatic version, having a low CD4 does not mean you definitely will get ill, just increases the risk. I know many people who had low, low nos and went on working, dancing, gardening, just fine and dandy.  Some of them even never got ill, some of them did.

So..just increases the risk..illness requires a working immune system to show a response.

- matt
"The object is to be a well patient, not a good patient"

Offline vokz

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Re: Can someone please explain...
« Reply #11 on: November 13, 2007, 06:16:51 PM »
Justice,

I cannot even begin to tell you how uncomfortable I am feeling reading this.

The bubonic plague survivorsí gene doesnít protect you from the consequences of not having an immune system.

You only have to look at the number of people who are diagnosed late to realise that it isnít all that unusual to feel fine with poor numbers; but as Matty correctly points out, you will - sooner or later - crash and burn in a spectacular fashion if you donít do something about this.

Please stop riding your luck and go see your doctor.

Offline BT65

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Re: Can someone please explain...
« Reply #12 on: November 13, 2007, 08:15:51 PM »
I would definitely high-tail it to the doc's to get your numbers updated.  I don't understand why you would be off of the meds. 
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline Life

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  • Member 2005
Re: Can someone please explain...
« Reply #13 on: November 13, 2007, 08:29:40 PM »
Justice, don't become a statistic of the worst kind...  Go see your Id doc...  Why did you stop meds?

Eric 

Offline Terry

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  • Posts: 339
  • 7/13/82 Infected
Re: Can someone please explain...
« Reply #14 on: November 13, 2007, 09:04:20 PM »

I was infected in July of 82. Had to stop working in June of 94. I wonít bore you with the details and all the times in and out of the hospitals nor the 100ís of thousands of dollars in medical cost to keep this old fag alive. But Iím still here hanging on...


However your post bothers me and it bothers me for one reason only. On November 2nd, a little over a week ago, a young friend of mine with a story much like your own, suddenly became ill. After passing out at work he was taken by ambulance to Kaiser hospital in Santa Rosa; he died the next day. 35yo.

He was never sick. Worked out, had a body like a Greek god. He never lost a day of work. He always maintained his social lifestyle.

Heís dead and Iím still here. Go figure... I canít figure out which ones better off...

OH and Iíve never had a detectable viral load, (ever) my cd4 is over 1000. Again, go figure....




Offline AlanBama

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Re: Can someone please explain...
« Reply #15 on: November 13, 2007, 09:31:25 PM »
I'm always astounded at the many stories I read here where people, who tempted fate once by getting infected, tempt it again by going off of HAART.  What's worse is not even seeing a doctor to know if you have... like -- 3 t-cells.

I'd suggest, in addition to going to see your medical doctor, also addressing these issues that reek of denialism-lite with a psychiatrist.

I agree with philly here.....sounds like ostrich head-in-the-sand syndrome to me.   Not judging anyone here -- I denied my own HIV for almost the first year....but to KNOW that your numbers are so low, and not seek treatment......I just don't get it.    Best of luck to 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

Online GSOgymrat

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  • HIV+ since 1993. INTJ
Re: Can someone please explain...
« Reply #16 on: November 13, 2007, 09:44:41 PM »
Back when I had low numbers I felt perfectly fine too. I wasn't fatigued, I worked out, jogged 5 miles, etc. However it didn't mean I was healthy. I just hadn't met the right bug yet to make me feel like I was sick. I did get problems such as thrush and molluscum. I was on meds at the time but they were not working.

Offline jason304

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  • There is so much more to me than my status.
Re: Can someone please explain...
« Reply #17 on: November 13, 2007, 10:09:21 PM »
Life is sooooooo unpredictable, we must do what we can to make sure we protect ourselves.  Going to doctors, getting advice, taking meds, all that stuff.  Look at the young guys having heart attacks without notice and killing over.  When your time is up your time is up.  I'm healthy and want to annoy people as long as I can--thats why I don't mess with my health.

Offline BirdBear718

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  • Posts: 105
Re: Can someone please explain...
« Reply #18 on: November 13, 2007, 10:18:11 PM »
The question you pose is:  is this common for someone with my numbers?
You have asked the people....and the people have responded with a loud and resounding "no" -- nothing with this disease is "normal" or "common,"  keep that in mind.

For your own personal health and safety, get rechecked by your ID doctor.  While there, engage in a long and serious discussion with ID doctor.  Print off this page and take it with you.
Your doctor needs to know what it is you are thinking...need to be able to read between your lines.

Regardless of what medication choice you make....get informed to make the appropriate choice.  I am hoping that by reading everyone's pleas to go to your doctor are heeded.  I am hoping you listen.

Stay well.  Call your doctor.

Offline Winiroo

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    • http://winiroo.synthasite.com/
Re: Can someone please explain...
« Reply #19 on: November 13, 2007, 10:44:58 PM »
At 21 tcells a couple of months ago I felt pretty much fine. I had minor annoyances like a little yeast on the roof of my mouth occasionally. I wasn't seeing a doctor either. Kind of a lengthy story I wont go into but I was being a stupid baby and wasn't taking care of myself.
I wound up going back to the doctor because I got shingles...again...Very unpleasant to say the least.
I've been as low as 3 tcells and felt just fine.

Yeah, I liked the whole "I'm an enigma" lie I told myself too. Its a comforting thing to think you are one in a million. You defy the rules of nature and such. But it doesn't do you much good thinking your an enigma if you wind up dead.

Hope this one doesn't bite you in the ass as bad as it bit mine.... Or worse.




http://cmd.shutterfly.com/commands/pictures/slideshow?site=winiroo&page=winiroo&album=21
ďBeing powerful is like being a lady. If you have to tell people you are, you aren't.Ē Margaret Thatcher

Offline jabez

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  • Posts: 97
Re: Can someone please explain...
« Reply #20 on: November 13, 2007, 11:30:08 PM »
Don't push your luck too far, Justice.  I was probably infected for at least ten years before I finally bothered to get an HIV test.   But when things finally went south, they deteriorated in a hurry.   I went from downright healthy to Sick As A Dawg in a matter of days.  Even at my sickest, I never missed a day of work.  I just sat at my desk and happily coughed up phlegm and blood.  God knows how many Opportunistic Infections that I was hosting.   I was an idiot.  When I finally got tested, I had a CD4 count of 68 and a viral load of 469,000.  I had suppressed it for a long time, but I couldn't suppress it any longer.  The Hi-Five was on the verge of kicking my ass.  Please don't let your virus get out of control.  See your doctor.

Peace,
Jabez     
Sept 2007 -- CD4 = 68; VL = 469,000
Started Atripla Sept 21, 2007
Nov 2007-CD4=217;VL=332
Feb 2008-CD4=237;VL=<50
Apr 2008-CD4=271;VL=66
Aug 2008-CD4=440;VL=52
Jan 2009-CD4=403;VL=61
May 2009-CD4=480;VL=129
Sep 2009-CD4=376;VL<40
Jan 2010-CD4=476;VL<40
Jul 2010-CD4=539;VL<40
Jan 2011-CD4=461;VL=53
Jul 2011-CD4=515;VL<20
Jan 2012-CD4=506;VL=54
Aug 2012-CD4=440;VL=21
Jan 2013-CD4=447;VL=<20
Jul 2013-CD4=406; VL=<20

Offline red_Dragon888

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Re: Can someone please explain...
« Reply #21 on: November 13, 2007, 11:30:36 PM »
more power to you, but please be careful...
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 justice3175

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  • Posts: 24
Re: Can someone please explain...
« Reply #22 on: November 13, 2007, 11:56:32 PM »
i coulda sworn i typed a reply to the "why did I stop taking the meds"...
but i guess i didn't send it throuigh...

okay - so to answer that in brief, because i don't feel like typing what i already typed (and if it shows up for some reason, i don't want to feel i'm repeating myself)..so I'll get to the main point as to why i went off meds.

I didn't like the way the medication maed me feel. I felt better without it. i have more energy, and I'm not laying in bed all day, nauseated.
Either way, it's a catch 22 - either the disease will hurt me, or the toxins i'll be putting in my body will...


Offline Miss Philicia

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Re: Can someone please explain...
« Reply #23 on: November 14, 2007, 12:10:36 AM »
PCP is much worse than a bit of nausea.  KS lesions aren't very attractive either from what I've seen.
"Iíve slept with enough men to know that Iím not gay"

Offline justice3175

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Re: Can someone please explain...
« Reply #24 on: November 14, 2007, 12:29:14 AM »
Regardless...it is still my choice not to take meds...

Offline Matty the Damned

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Re: Can someone please explain...
« Reply #25 on: November 14, 2007, 12:35:04 AM »
That's exactly right Justice. Which is why Matty the Damned didn't get in your face about taking or not taking them. It's entirely up to you. Like you I have issues with medications and I'm horribly non-compliant. In fact I've not taken my meds for a few weeks now. I'll start again in a fortnight or so.

But you do need to be aware of the potential consequences of not taking meds and wandering around with a low CD4 count. HIV is serious shit.

MtD

Offline justice3175

  • Member
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Re: Can someone please explain...
« Reply #26 on: November 14, 2007, 12:58:04 AM »
I am aware of that, matty...and thank you for not coming down on me hard...
Here's the thing...there's too much i don't understand...like I was diagnosed at a cd4 of 50, when a year before, i tested negative - and then finding out that it takes approximately 10 years for hiv to turn into aids...and the thing is - i don't know if I want to understand it, to be honest...especially now...
My ex was always getting on me about going to the doctor and taking my meds. It was as if I was being pressured into all of it.
tonight, my mother is telling me the same thing - as well as many people on this board.
It really makes me question why i ever came back here - to tell you the truth.
I do not let my status dictate my life.
i do not let it run me...
and to be honest, my belief in overcoming the disease by not being reminded of it everyday is what I feel helps me succeed in feeling 'healthy"
Call it denial. Call it irresponsible. Call it what you want...
but as long as I feel fine, then why should it matter?

Offline Matty the Damned

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Re: Can someone please explain...
« Reply #27 on: November 14, 2007, 01:09:40 AM »
Honey, this whole thing about HIV taking ten years to turn to AIDS is a crock.

I was diagnosed in 2002, probably infected in 2000 or 2001 and by April 2003 I had a cheerful diagnosis of AIDS. By October last year I had 15 CD4 cells and let me tell ya, I was terribly ill. Why I'm non-compliant is a matter for me. I don't really understand it myself.

What I do understand is it frustrates my doctors, distresses my friends and family and is ruining my health. I'm being supremely selfish and so are you. But that's the human condition I guess. At least I don't have a partner on whom I'm inflicting my foolishness.

I can't really tell you what you should do. You may be one of those people who walks around for years with 20 CD4 cells and be as fit as a fiddle. But that's probably not going to be the case.

What's more likely to happen is you'll be stricken with PCP or histoplasmosis or one of the many cancers that affect people with AIDS.

But it's your choice. Good luck with that.

MtD

Online leatherman

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Re: Can someone please explain...
« Reply #28 on: November 14, 2007, 01:31:17 AM »
I didn't like the way the medication maed me feel. I felt better without it. i have more energy, and I'm not laying in bed all day, nauseated.
Either way, it's a catch 22 - either the disease will hurt me, or the toxins i'll be putting in my body will

Hey, I know where you're coming from on this one. Check out that little graph in my sig line in a minute. That red line tracks my viral load that keeps spiking throughout the last decade. Each one of those spikes is because I went off meds. I'm not going to lecture you about taking meds; but you should consider a few things.

During most of those years in my graph, I was in a real funk from having lost my partner, and I had a crappy doctor. He just never listened as I complained about how sick and terrible I felt taking the meds. Eventually, I'd give up and just quit the meds. That action was quickly reinforced because I would actually start to feel better again. For 6, 8, sometimes up to 9 months, I'd feel freaking terrific off the meds. Then I'd start getting tired, I see thrush appear in my mouth, and by the time new numbers had come in from the doc (who I would have been blowing off those 6-9 months), I'd be in serious trouble. Viral Loads up to 600,000; T-cells down to 5.

And that would only be the start of my problems. For the next 3 months, I'd be deadly sick. Not just from the high VL and low t's; but from the side effects of the damned meds. I'd finally get through the worst part of the side effects (but never over all of them) and stay on the regimen for a yr or so. But after a while, I'd get tired of throwing up and feeling sick, and just skip one day of meds. Then it'd be two, and then... well, you get my drift. Within a few weeks I'd be feeling great again, start blowing off the doctor appts. and the whole process would start over.

But the next time, the cycle started, I got serious grief from the doctor. Now he started telling me all about "resistance" and, sure enough, I had to switch to different meds that would work and go through even more side effects.

This cycle kept repeating for a decade until I got through my depression, switched doctors, switched meds and got on a regimen with as few side effects as possible. (I'm still barfing about a dozen times a month; but that's a helluva lot better than puking every day along with the rashes and the runs.)

So, what would I like you take away from my tale to think about?

1) You might need to just change meds to get a combo that works for you.

2) If you start and stop meds, you run a risk of developing resistance (and that could really screw up things in the future. don't burn all your bridges, you know)

3) You might just have to accept that living with HIV, means being sick. Now this is a tricky issue - quality of life.

Everyone has to make their own choices as to what they can and will endure. Personally, I trade off being sick a doz times a month to stay feeling fairly good the rest of the month. (I just wish I knew in advance "which" days would be sick days). But I've already decided that I will refuse meds if the only ones available that work for me also make me puke every day. I did that for nearly 3 yrs and I refuse to call that "living". Yes, it can be a catch-22. It's a very personal decision that you alone with have to make by choosing medical treatment or the consequences of doing nothing.

It sounds like you've been very lucky. I know of a few other people who had been on meds once but managed to stay off of them for several years - but they still had their numbers regularly checked to make sure things weren't getting worse. Unfortunately, the last one of those people I knew off meds, has just had to go back on them because her numbers had gotten so bad.

As you can tell by the posts, many of us think that you are playing pretty close to the fire right now, and we'd hate to see you get burned. (I know I sure can't fuss at you though. That graph shows all the times I wasn't compliant.) Regardless of what you choose to do, my suggestion is that you should get to a doctor soon, see exactly what you numbers are, and discuss your options - to prevent things from getting bad.

Best wishes!
mikie
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Oh my friends, my friends forgive me
That I live and you are gone.
There's a grief that can't be spoken.
There's a pain goes on and on.
Empty chairs at empty tables
Where my friends will meet no more.

"Empty Chairs at Empty Tables" from Les Miserables

Offline StrongGuy

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Re: Can someone please explain...
« Reply #29 on: November 14, 2007, 02:51:55 AM »
Bud if you want to keep going you gotta make some hard decisions. Thereís no sugarcoating this. You gotta sit down with your doc and figure things out. You can still be pretty damn sick and feel fine. Ten years is not carved in stone. Some go shorter and some can go longer. Obviously you weren't on the ten year plan. You gotta acceptit and move on.

I donít know what combo you were on, but if you want to stay in the game you gotta start playing ball and see what options you have to get it under control. Denial isnít a plan. Meds all have potential for sides, but see whatís out there for you and see if you can work out a regiment with sides you can accept and tolerate. You may even find one that is pretty well tolerated. And it's not too late if you get on it ASAP.

If you rather throw a Hail Mary and try to wing it for as long as you can, thatís your choice. But I wouldnít if I was you. I loathe fear-mongering, and Iím not trying to do that. I just find this scenario, without an adequate level of concern on your part, foreign and alarming to me.

Good luck with whatever you decide, but make sure you have both eyes WIDE open.

Peace man :)

Mike
(who think you know what you should do)
« Last Edit: November 14, 2007, 02:55:42 AM by StrongGuy »
"Get your medical advice from Doctors or medical professionals who you trust and know your history."

"Beware of the fortune teller doom and gloomers who seek to bring you down and are only looking for company, purpose and validation - not your best physical/mental interests."

"You know you all are saying that this is incurable. When the real thing you should be saying is it's not curable at the present time' because as we know, the great strides we've made in medicine." - Elizabeth Edwards

Online GSOgymrat

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Re: Can someone please explain...
« Reply #30 on: November 14, 2007, 07:04:51 AM »
Justice3175, not thinking about paying my bills makes me feel better but that doesn't mean the bank isn't going to eventually repossess my car. If you don't want to take meds because you think the cure is worse than the disease that is your choice-- you're an adult with control of how you are going to handle your infection. But don't believe that you have 10 years before your going to get sick or that nothing bad can happen-- that's just ignorance.

Offline cocoboogie

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Re: Can someone please explain...
« Reply #31 on: November 14, 2007, 07:53:14 AM »
Justice,

In one of your earlier posts, you state you were relocating to Atlanta and wanted information on ADAP. You also stated you were on ADAP in California and New York.

I am hoping this means you are considering taking meds again once you move to Atlanta.  I am in Atlanta and just starting the ADAP process, so I cant tell you how it is going to work as of yet.  There are a few documents I need to turn in.

I was diagnosed poz over 17 years ago. .

I never had any issues and always felt great. I have never taken any medications. Sometimes I thought I had some super strong immune system or maybe (hoping) I was misdiagnosed.

This year AIDS decided to knock at my door and give me a wake up call as to how serious she can be and make me take notice.

I have developed Kaposi Sarcoma (KS) on the soles of my feet making it extremely painful to walk.  I am under going chemotherapy. I only have 20 tcells.

My doctor told me that KS is rare in AIDS patients today because of most people have started taking HAART early.  Had I started meds early this may not have been something I am having to deal with today.

I cant judge you for not wanting to take meds because I have walked the same path. I just hope if you develop an Opportunistic Infection your immune system is able to recover with property medical treatment. 

When you move to Atlanta, I hope you seek out information about the ADAP program here and see if it works for you. As I go thru my process I will update you.




Date    CD4  VL
11/07  20     56,000 started chemo for KS
4/08    12     60,000 started Kaletra and Truvada
5/08    14     820
6/08    19     Undetectable stopped chemo
7/08   149    Undetectable  
8/09   247    undetectable
6/10   498    undetectable
1/11   408    undetectable
4/11   402    undetectable  
5/11   511    undetectable
11/11  599   undetectable
7/12    439   undetectable
3/13     479 undectectable
9/13 645  undectectable

Offline AlanBama

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Re: Can someone please explain...
« Reply #32 on: November 14, 2007, 10:16:09 AM »
It really makes me question why i ever came back here - to tell you the truth.
I do not let my status dictate my life.
i do not let it run me...
and to be honest, my belief in overcoming the disease by not being reminded of it everyday is what I feel helps me succeed in feeling 'healthy"
Call it denial. Call it irresponsible. Call it what you want...
but as long as I feel fine, then why should it matter?

Honey, believe me, we all understand.  The meds make you feel awful, you feel pretty "normal" without them, so why take them to make yourself sick, right?   OK I'm going to tell you why:

You have an AIDS diagnosis.   You have dodged a lot of bullets by not having any illnesses.   But believe me (and everyone else on the forums) when we tell you that it WILL hit you, and hit hard.   When you are in the hospital bed, on life support, with sepsis and all kinds of nasty infections and no immune system,  the little bit of nausea you had from taking the meds will seem pretty insignificant.   You'll beat yourself up and say "why didn't I just take my meds?".

I have BEEN there.   I know how it feels to be sick and dying from AIDS.   Please believe me, taking the meds is so much better than that feeling.   I would cry, and beg and plead with God or the Universe or SOMEBODY to just save me!   And you know what?  Somebody did, with the protease drugs in 1996.   Sure I hate taking my meds; they make me nauseated, I have very little appetite, I have lipoatrophy....but ALL OF THAT is still not as bad as being on your death bed from AIDS.

OK I've had my say, and like Matty and the others here, I certainly respect your decision not to take meds as a PERSONAL CHOICE.   I just want you to be completely informed, so you can make the best choice.

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 pozattitude

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Re: Can someone please explain...
« Reply #33 on: November 14, 2007, 10:53:12 AM »
Honey, this whole thing about HIV taking ten years to turn to AIDS is a crock.

MtD

AMEN!!!!! I know I was infected in 1996 and by 1999 my TC was around 250 and VL in the 100's of millions....I am what I like to call a fast progressor...

Justice,

I don't mean to preach or be hard on you (well maybe I do want to try that tough love thing).  Seriously, you are an adult and you do have the right to do with it as you please; however, because I lost a dear friend due to the fact he didn't like to take pills, I feel very strong about this issue.
My first set of meds were AZT, Videx ( old chalk like formula ) and Zerit and I was so sick I ended up in the hospital because of the meds...but I didnt' give up, I worked with my doc to find a combo that worked for me and didn't make me sick and I've been on my current set of meds since 2000/2001 now and very healthy.
If people are giving you a hard time for not taking meds it is because they care about you and want to see you healthy and alive.
Having said that,

I wish you all the best with whatever choice you make.



Rich (who lives a healthy life with the help of modern chemistry)
POSITIVE PEDALERS... We are a group of people living with HIV/AIDS, eliminating stigma through our positive public example.

Offline Winiroo

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Re: Can someone please explain...
« Reply #34 on: November 14, 2007, 12:43:28 PM »
I hate taking the pills too. They make me pukey.
The only reason I responded is because your post led me to believe you had some doubt.

I wont mommy you and try to get you to believe I know where you are coming from because I dont think you'll listen to a thing I have to type.

If you want to not take pills then by all means dont take them.



http://cmd.shutterfly.com/commands/pictures/slideshow?site=winiroo&page=winiroo&album=21
ďBeing powerful is like being a lady. If you have to tell people you are, you aren't.Ē Margaret Thatcher

Offline thunter34

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Re: Can someone please explain...
« Reply #35 on: November 14, 2007, 01:26:02 PM »
I am aware of that, matty...and thank you for not coming down on me hard...
Here's the thing...there's too much i don't understand...like I was diagnosed at a cd4 of 50, when a year before, i tested negative - and then finding out that it takes approximately 10 years for hiv to turn into aids...and the thing is - i don't know if I want to understand it, to be honest...especially now...
My ex was always getting on me about going to the doctor and taking my meds. It was as if I was being pressured into all of it.
tonight, my mother is telling me the same thing - as well as many people on this board.
It really makes me question why i ever came back here - to tell you the truth.
I do not let my status dictate my life.
i do not let it run me...
and to be honest, my belief in overcoming the disease by not being reminded of it everyday is what I feel helps me succeed in feeling 'healthy"
Call it denial. Call it irresponsible. Call it what you want...
but as long as I feel fine, then why should it matter?

Below is not so much an attack as a vent that I need to make. 

I have to say something about this post has been sticking in my craw for a few hours now.  Yes, I get it that you feel oh so much better about HIV by not thinking about it.  I also get that ultimately it is "your choice" to not take the meds.  But it's just kind of rotten to be down on the people of these forums for "pressuring you" about seeing a doctor and taking meds.  You come on here and post about not seeing doctor or taking pills, last count around 90, current state of things unknown...I think you got a fairly sincere and heartfelt response.

And personally, I think I will call it denialism and I will call it irresponsible.  "Why does it matter?"

Because, coming to Atlanta, I know precisely where you are gonna end up if (or should I just say when) the shit hits the fan:  Grady.

Where an astronomical medical bill is going to further rip an already tattered financial fabric to shreds in an effort to pull you back out from the grave.

Yes, you will be pressured into medical treatment - even if not by any of us.  HIV just kind of gets bossy like that.

And whether or not you wanna admit it, your status already does dictate your life.
AIDS isn't for sissies.

Offline David_CA

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Re: Can someone please explain...
« Reply #36 on: November 14, 2007, 01:39:57 PM »
You say you don't like the way pills make you feel... this brings three points to my mind.
1) Not all meds will keep you in bed all day or make you nauseated.  Not all meds give you the runs, either.  Often, especially if one's not resistant to any of the meds, there is a variety to choose from.  I don't feel bad, don't have the runs, haven't puked in years ('cept from drinking and once when I was hospitalized with PCP) and I take meds.  I've got lots of energy, though I have to take things a bit easier now, which leads me to...

2) If you think meds make you feel bad, wait 'til a nasty ole OI gets you.  I've only had one OI, but it's the one that killed so many people back 'in the day':  PCP.  Last Thanksgiving at my mom's house, I was so sick I could only eat two bites of food until I had to go lay on the sofa.  Now, this is the biggest meal of the year, the best meal of the year, at my mom's dining room table, of all places.  I went to the Dr. a few days later with severe PCP.  He showed me the x-rays and said "these are not white balloons; these are your lungs".  He'd already completed my admission paperwork, and I had to go to the hospital immediately.  I was there for 8 days, on multiple IV's, a bronchoscopy, in a unit that was one step up from an ICU.  Yep, I was sick as hell and felt like crap.  Meds are much better, believe me.  Just last night, I was working on a project and was reminded of the close call I had with PCP.  The damage to my lungs from PCP is very evident to me ever time I do something physically strenuous.  By the way, I had just under 300 t-cells when I started getting sick.  I also ended up with a hospital bill of over $35,000 (I had made some changes to my insurance policy which pretty much saved me).
3)
Quote
Here's the thing...there's too much i don't understand...like I was diagnosed at a cd4 of 50, when a year before, i tested negative - and then finding out that it takes approximately 10 years for hiv to turn into aids...and the thing is - i don't know if I want to understand it, to be honest...especially now...
 
I'm not intending to sound mean, but maybe if you understood more, you would be a bit less nonchalant about all this.  I mean, do you want your mom to visit you while you're dying laying in a hospital bed? It does not take 10 years to turn to AIDS.  I couldn't have been HIV+ for more than three years at the most before I received my AIDS diagnosis. I can bet you most of us wish we didn't need to understand all this; I know I certainly didn't in my pre-HIV days.  But you know, I want to live.  I want to be as healthy as possible.  I'm not ready to say goodbye to my husband, family, or friends.  I've got things I want to do.  The only way all this is going to happen is for me to take care of myself.  Of course, what you do with your life and your health is up to you.  The difficult part will be getting parents, friends, and loved ones to understand your choices.  Good luck to you.

David
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 justice3175

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Re: Can someone please explain...
« Reply #37 on: November 14, 2007, 02:10:24 PM »
I know I'm coming off arrogant about all this, and for that i apologize.

I'm just a very stubborn individual who is not ready to believe that something inside of me is stronger than i am.

i know this probably makes me sound like a horrible or even ignorant person on this sight....which is why i should have never come back...

but...i am looking for treatment once i move...don't know if i'm ready to start meds again, but I am planning on finding a doctor....was planning on it before this thread started...

the truth is, i haven't been to the doctor because so much has turned around in the last year that prevented me from putting my health before everything else.

Anyway, thanks for those trying to help me...it's not that i don't appreciate it - it's just that you're not the first to express these things.

My mother was telling me last night of what i need to do. My mother is going through health issues, herself. She, like me, wants to believe her disease is mental - even though it's taking a toll on her body. Yet, her stubborness keepes her strong, as she still chooses to do things independently...even when her body tells her she can't. Guess i inherited that from her. Anyway, she lectured me about taking care of myself - in a way that I know what i have to do....but I need to stop thinking that i'm doing this for other people...because I really need to do this for myself...

and I will...when i'm ready...

Offline thunter34

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Re: Can someone please explain...
« Reply #38 on: November 14, 2007, 02:44:23 PM »
I'm just a very stubborn individual who is not ready to believe that something inside of me is stronger than i am.

Ah, but it isn't stronger than you are.  Because you have can have things that it lacks - knowledge and determination.  Pills don't save you, not completely.  YOU save you.  And you do so by learning how to use the tools at your disposal to do your best to outmaneuver this virus.   And that's what the meds, the labs and even this site are essentially - the tools for the job.  If survival was always just a physical matter, the cats would have eaten the cavemen a long, long time ago and we wouldn't even be having this discussion.

i know this probably makes me sound like a horrible or even ignorant person on this sight....which is why i should have never come back...

No, but tucking tail and running off when you run into counter perspectives will. 

Stick around.   ;)

AIDS isn't for sissies.

Offline allopathicholistic

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Re: Can someone please explain...
« Reply #39 on: November 15, 2007, 01:10:16 PM »
Hi Justice. When I read what you're saying here I truly feel like I'm listening to myself back in 2001/2002/2003.

My short story: 6 short years from seroconversion to AIDS (CD4=42) and when AIDS hit, it hit super hard and without mercy. Today: CD4=417 and that's because of the HIV meds I "swore" I'd "never" take.

Please keep us updated.

Offline allopathicholistic

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Re: Can someone please explain...
« Reply #40 on: January 25, 2008, 10:13:48 AM »
Hey Justice, if you still read this website feel free to ask us furhter questions. Wondering about you and hope you're alright

 


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