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Author Topic: Why I'm not on meds  (Read 11884 times)

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Offline Etay1207

  • Member
  • Posts: 131
Why I'm not on meds
« on: March 15, 2010, 08:53:27 PM »
I know many of you have been waiting for me to write this so you can ban me from posting. Maybe I just need to vent a little. Someone just posted on here with a CD4 count of 11. It'll be one thing if he's in the hospital with PCP, but he's not. He's working 13 hours a day! Ok class, let's review...when your tcells are <200 it means that you ALREADY have immuno deficiency. Not that you are in danger of having a compromised immune sysyem. YOU ALREADY HAVE IT! (according to the CDC).   Now divide that number by 20 and you'll get Kev's tcell count. Am I missing something here? If you multiplied his tcells by 20 he would STILL HAVE AIDS!!!  How is he able to work 13 hours a day! And his only complaint is fatigue! Of course he's gonna be fatigued working the midnight shift.  Our bodies are designed to SLEEP at night. 
    I have my own story. I don't know Kev so he could be lying about not having any OI's.  But I live with myself everyday. My tcells were 50 last month. If you multiplied my tcells 4x I would STILL be classified as having Immuno Deficiency. Why am I working 14 hours a day? Why am I able to run every morning and workout during the day. Not to toot my own horn but people admire my body all the time. They are shock to find out that I have AIDS.  My viral load is VERY high as you all know. You will have a hard time convincing me that I am sick when my body is telling me otherwise. My chest pains went away when I got back to running everyday. We thought maybe HIV was affecting my heart just to find out I wasn't farting enough!
    I read through these post just about everyday for they are a wealth of information of real life experiences. As I read through the forums I notice alot of you with higher tcell counts are sick. Alot of you are on disability. And several of you are dealing with OI's such as thrush and KS inspite of your "normal" CD4 counts. After all the reading and studying I've done on HIV I'm not convinced that a lack of tcell  is the culprit. Alot of you were diagnosed while sick and ur tcell counts were low. My question would be - were you sick because of a low count, or is the low count a result of you being sick? We already know that ur tcell count is affected by sickness.   
    My rant is just about done. Kev and I are examples of people who are healthy with low tcell counts. And you guys will debate whether we're healthy or not til Jesus comes (if he comes). I have a few friends who are in the same boat as I am but they are denialist so their testimonies are invalid on these forums. But the fact remains, they are alive without OI's! There are many denialist who have died and there are many who took the meds and died.   
  Another issue I have that bothers me. I am seen on these forums as such a horrible and misguided person because I made a conscience decision not to take HAART.  I want to meet you guys in Vegas but get the feeling that I won't be welcomed. I've been encouraged by quite a few people on here to keep quiet and "how dare I question the medical community". I had to fight with my doctor just to get labs done last month. She would rather NOT KNOW than to admit that maybe...just maybe CD4 count is a poor indicator of immune function. She encouraged me to stop monitoring my CD4's since I wasn't on meds. I definetly would want to know if there were healthy people with a low CD4 count. For one thing, it would dispel alot of fear associated with being HIV+. The problem I have with many denalist is that they stop getting their numbers checked. I know of MANY who have been HIV+ over 10 years and not on drugs but are healthy. But it doesn't help someone to not know if they are in the AIDS zone or not. You could argue that their tcells are high and that's why they aren't sick.  That's why I continue to monitor my numbers. Nobody can deny that I have AIDS! My tcell count says it, my CD% screams it, my VL is scary! Why am I not sick?
POZ since 1999
1/07 tcells: 530 vl: 72,922 7/07 tcells: 542 vl: 26,577
9/08 tcells: 339 vl: 56,120  7/09 tcells: 267 vl: 663,160
11/09 tcells: 71 vl: 498,670 2/10 tcells: 52 vl: 322,000
 no meds and feeling great!

Online bmancanfly

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  • Medicare For All !
Re: Why I'm not on meds
« Reply #1 on: March 15, 2010, 09:10:31 PM »
I'm curious as to why you keep coming back here.  Not that you shouldn't.  But why?  Your beliefs seem to be very strongly felt.  However, completely at odds with what this website stands for.  

So why keep coming back?  You can't possibly expect to get satisfactory answers to the questions posed above - so why?  I'm really curious.

I wish you continued best of health.
« Last Edit: March 15, 2010, 09:16:57 PM by bmancanfly »
"The trouble with the world is that the stupid are cocksure and the intelligent are full of doubt."

 Bertrand Russell

Offline David_CA

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  • Posts: 3,246
  • Joined: March 2006
Re: Why I'm not on meds
« Reply #2 on: March 15, 2010, 09:23:39 PM »
I wonder why you even bother to get labs.  It's not like all those numbers mean anything, is it?
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 Matty the Damned

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Re: Why I'm not on meds
« Reply #3 on: March 15, 2010, 09:28:39 PM »
Wall of Text. tl;dr.

Learn to use paragraphs.

MtD

Offline tokyodecadence

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  • Posts: 234
  • A one room disco.
Re: Why I'm not on meds
« Reply #4 on: March 15, 2010, 09:38:50 PM »
Um, call me crazy, but wouldn't one say that anyone who has HIV has "immuno difficiency"? Which is one word, by the way.


HIV= Human Immunodeficiency Virus

I honestly think that at this juncture, no one cares that you have AIDS, aren't on meds, or don't fart enough (especially the latter). Do what you wish with your health, it's completely your decision, and one that deserves respect. But don't act like you're some sort of holy grail of of the HIV community. You're just another Christine Maggiore. It'll catch up to you one day. According to those numbers, I wouldn't be surprised if that day was sometime before the 3D DVD release of Avatar.

Man, you just keep cranking out the hits.
« Last Edit: March 15, 2010, 09:41:19 PM by tokyodecadence »
[.Fod„o.]

Offline wimble

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  • Posts: 25
Re: Why I'm not on meds
« Reply #5 on: March 15, 2010, 09:50:01 PM »
I'm new to this game, but the general idea is that if CD4cells are low you will get sick and die without medical intervention.Firstly, why didn't you go on meds? Dude, i think everyone respects your point of view, but the fact is, its not good news if your refusing meds ten+years after your diagnosis...regardless of whether you believe CD4 cells have nothing to do with immune deterioration, the fact is you will more than likely get sick one of these days. Unless of course you have been eating a shit load of bananas!! Lol.
God bless.

Offline Assurbanipal

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  • Taking a forums break, still see PM's
Re: Why I'm not on meds
« Reply #6 on: March 15, 2010, 10:01:32 PM »
Etay

Kev already has had thrush.  And dreadful fatigue, so bad that he sought out a doctor.

Me, I had a tcell count of 22 when finally diagnosed.  I was working over 80 hours a week for years until I got the first round of pneumonia.  I took a week off and then worked 50-60 hour weeks for a month.  Then came round two of the pneumonia.  A week off and I went back 30 hours a week.  Three weeks to round three.  But I went to work ( dragging my oxygen tank!)  the day before I went into the hospital.  Was it possible? sure.  Was it wise?......

You are not guaranteed an OI or death when you have a low tcell count.  But each day you roll the dice, and every day that your tcell count is low the dice are loaded against you.   Look at the first chart  in this link http://hivinsite.ucsf.edu/InSite-KB-ref.jsp?page=kb-03-01-04&ref=kb-03-01-04-fg-02&no=2   Everyone does not get AIDS or die the year they have a CD4 count under 200 and a high viral load.  But within 2 years over 60% do.  And then 80% and then 90%.  

One of the things that chart shows is that we can expect, with those kind of numbers, that some people will be lucky like you have been so far -- but the chart shows that for most of those people the luck DOES NOT LAST.

You know it is very hard to know when you've just been lucky to date.  And it's not just lucky in health, there have been studies that show that people who were lucky in business are convinced it was something special and unique that they did.  For instance, study after study show that most investment managers can't consistently perform better than the market -- but talk to any of them after a lucky quarter and they will all tell you about their enormous skill.  

So one question for you boils down to, have you been lucky so far or is it something special in you that makes it so you can hold off the virus indefinitely?  The medical indicators look like it has been luck -- people who can hold it off indefinitely don't usually have declining cd4 trends.

But the more important question for you is what to do?  You have to make a decision and you don't have all the data.  Your health could be luck, or you could have some special immunity.  How to decide?  

Well, one strategy is to look at both sides of the question.  If you have been lucky so far and things will someday go south on you what are the risks without drugs? (illness and death)  If you have a special immunity and go on the drugs anyway what are the risks? (some people get side effects, but they are generally manageable)

What sort of decision process are you using?

I think most of us want you to do well.  I certainly do.  But we worry that you are on the track to hurting yourself.  

Best wishes to you.  


A
5/06 VL 1M+, CD4 22, 5% , pneumonia, thrush -- O2 support 2 months, 6/06 +Kaletra/Truvada
9/06 VL 3959 CD4 297 13.5% 12/06 VL <400 CD4 350 15.2% +Pravachol
2007 VL<400, 70, 50 CD4 408-729 16.0% -19.7%
2008 VL UD CD4 468 - 538 16.7% - 24.6% Osteoporosis 11/08 doubled Pravachol, +Calcium/D
02/09 VL 100 CD4 616 23.7% 03/09 VL 130 5/09 VL 100 CD4 540 28.4% +Actonel (osteoporosis) 7/09 VL 130
8/09  new regimen Isentress/Epzicom 9/09 VL UD CD4 621 32.7% 11/09 VL UD CD4 607 26.4% swap Isentress for Prezista/Norvir 12/09 (liver and muscle issues) VL 50
2010 VL UD CD4 573-680 26.1% - 30.9% 12/10 VL 20
2011 VL UD-20 CD4 568-673 24.7%-30.6%
2012 VL UD swap Prezista/Norvir for Reyataz drop statin CD4 768-828 26.7%-30.7%

Offline WillyWump

  • Member
  • Posts: 7,202
  • Fall is in the air!
Re: Why I'm not on meds
« Reply #7 on: March 15, 2010, 10:11:49 PM »
 How is he able to work 13 hours a day! And his only complaint is fatigue!


Etay,

Perhaps you missed my other posts regarding my friend Scott. He never took meds. He worked 3 jobs, and was never fatigued. He looked great, he felt great. He showed no signs of illness. He became abruptly sick one day. 4 weeks later he was dead. If you want more detail check my posts regarding him.

All the best,

Will
POZ since '08

Last Labs-
6/3/14 CD4- 736, UD 34%
6/25/13 CD4- 1036, UD,
2/4/13, CD4 - 489, UD, 28%

Current Meds: Prezista/Epzicom/ Norvir
.

Offline PeteNYNJ

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  • When life gives you AIDS...make LemonAIDS!
    • Dance for Me, Puppets
Re: Why I'm not on meds
« Reply #8 on: March 15, 2010, 11:26:26 PM »
I don't know why you would take a chance with your life to prove some point that you are not going to die from HIV?  You also tend to use a lot of anecdotal information to prove your point (I know this guy and he isn't dead yet).  The incidents you mention are very isolated and for every one you have, member on this forum have mentioned that they have had friends in the same boat as you who have died.  Do you think they are making that up?

Something about your posts strike me as a cry for help, especially this one.  Why would you continue to come on this site if you don't think it's basic concepts apply to you?  It would be like me posting all over a breast cancer survivor board boasting about since I don't have breast I will be just fine. 

My question for you is if you do indeed come down with an OI and are hospitalized, would you be ready to take medication at that point? 

I hope your health continues to do well and if it doesn't I hope you remember what you have learned on here.

Offline Hellraiser

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  • Semi-misanthropic
Re: Why I'm not on meds
« Reply #9 on: March 15, 2010, 11:41:32 PM »
I think I may have accidentally sparked this thread, but I'm still curious as to what would make you begin taking medication to combat your illness.  Otherwise, there really isn't any reason to consider yourself HIV+.

If you believe that your numbers don't matter and they won't influence you to ever take your diagnosis as an illness.  Then you believe yourself to be immune to the effects of the disease itself, right?

I mean I'm still well below the 200 mark but I actually feel fine now.  I deal with some problems most people don't, but nothing as egregious as the laundry list of OIs people associate with a severely compromised immune system.  If you think your CD4 count doesn't matter when it comes to using medicine to fight your illness...what does?  I'm not attacking you I'm just curious to know what it would take for you to begin medication.

Offline Okealyshire

  • Member
  • Posts: 139
Re: Why I'm not on meds
« Reply #10 on: March 15, 2010, 11:53:13 PM »
You will have a hard time convincing me that I am sick when my body is telling me otherwise. . . . Nobody can deny that I have AIDS! My tcell count says it, my CD% screams it, my VL is scary! Why am I not sick?

You seem to regard sickness as a condition that requires display of obvious symptoms. You are sick. The scientific methods of measuring your illness are obvious. One does not have to be visibly symptomatic to be ill.

Offline skeebo1969

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  • Posts: 5,705
Re: Why I'm not on meds
« Reply #11 on: March 15, 2010, 11:53:35 PM »


    
I despise the song Love is in the Air, you should too.

Offline next2u

  • Member
  • Posts: 1,762
Re: Why I'm not on meds
« Reply #12 on: March 16, 2010, 12:10:21 AM »
lmao...double face palm...skeebo...ur hiliarious.

havent read the thread...just saw the pic...
midapr07 - seroconversion
sept07 - tested poz
oct07 cd4 1013; vl 13,900; cd4% 41
feb08 cd4  694;  vl 16,160; cd4% 50.1
may08 cd4 546; vl 91,480; cd4% 32
aug08 cd4 576; vl 48,190; cd4% 40.7
dec08 cd4 559; vl 63,020; cd4% 29.4
feb09 cd4 464; vl 11,000; cd4% 26
may09 cd4 544; vl 29,710; cd4% 27.2
oct09 cd4 ...; vl 23,350; cd4% 31.6
mar10 cd4 408; vl 59,050; cd4% 31.4
aug10 cd4 328; vl 80,000; cd4% 19.3 STARTED ATRIPLA
oct10 cd4 423; vl 410 ;); cd4% 30.2
jun11 cd4 439; vl <20 ;); cd4% 33.8 <-Undetectable!
mar12 cd4 695; vl ud; cd4% 38.6
jan13 cd4 738; vl ud; cd4% 36.8
aug13 cd4 930; vl ud; cd4% 44.3
jan14 cd4 813; vl ud; cd4% 42.8
may14 cd4 783; vl *; cd4%43.5

Offline Miss Philicia

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  • celebrity poster, faker & poser
Re: Why I'm not on meds
« Reply #13 on: March 16, 2010, 12:13:22 AM »
... can't be bothered with any of this
"Iíve slept with enough men to know that Iím not gay"

Offline WillyWump

  • Member
  • Posts: 7,202
  • Fall is in the air!
Re: Why I'm not on meds
« Reply #14 on: March 16, 2010, 12:25:33 AM »
Miss Philicia
Member

 Online

Posts: 11,959


Whoa! MissP! only 41 more posts till 12k!! What's that, about 3 days to go? I'll be waiting anxiously with my glass of champagne (Spumante of course).

*Yes, this was an intentional hijack.
POZ since '08

Last Labs-
6/3/14 CD4- 736, UD 34%
6/25/13 CD4- 1036, UD,
2/4/13, CD4 - 489, UD, 28%

Current Meds: Prezista/Epzicom/ Norvir
.

Offline tednlou2

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  • Posts: 4,988
Re: Why I'm not on meds
« Reply #15 on: March 16, 2010, 12:28:05 AM »
Etay,

Either you or someone posing as you posted this question to Dr. Gallant.  I made reference to this before, but I didn't provide the link.  Here is that Q&A:

Low tcells, high viral load, and healthy?

Joel E. Gallant, M.D., M.P.H.

Posted on Mar 1, 2010
--------------------------------------------------------------------------------
Hello Doctor. My tcells: 52 VL: 322,000. I haven't had an OI yet and rarely get sick? I am treatment naive. When do the symptoms begin?

On Mar 1, 2010 Joel E. Gallant, M.D., M.P.H. replied:

--------------------------------------------------------------------------------
They've already begun, because it sounds like you're completely demented. Get yourself on treatment NOW! Everyone feels fine until they don't, and in your case, the first "symptom" could be the one that kills you.

DID YOU POST THIS QUESTION?  IF SO, WHAT DID YOU THINK OF THE ANSWER?

Offline tednlou2

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Re: Why I'm not on meds
« Reply #16 on: March 16, 2010, 12:50:00 AM »
One more thing---  "Maybe CD4 is not a good indicator of health?"

I was hospitalized with pneumonia with a CD4 of 171.  I'm pretty sure this would not have happened if my CD4 wasn't so low.  This, to me, points to CD4 being THE indicator of health.  I don't know what my CD4 was before that--maybe it was very high or maybe I really was low.  Why did it bounce back?  Maybe being sick artificially lowered it and it naturally bounced back.  The fact still remains I had a very low CD4 and got VERY ill.  They said I would have died if I hadn't come in.  

Maybe the 4 days of HIV meds I was given in the hospital did something to help.  I'm now resistant to those meds and have the K103N mutation.  I've read mutations can knock out certain meds, but mutations can also make HIV "less fit".  Maybe the mutation slowed down viral replication and allowed my body to get back to normal.  I don't know.  It would seem unlikely a mutation would allow such a recovery.  It could be a little of both--the mutation and my CD4 being artificially low.  I know my CD4 just weeks after those meds boosted my CD4 over 1,000 and vl just 400.  Even recovering from pneumonia, I actually felt better in the months following those meds.  I probably felt better because my CD4 was over 1,000 and I had a very low viral load.  

Your doctor probably doesn't want to do bloodwork, because it is like wasting money at this point.  If you aren't going to start meds ever, then why do it?  About people having illnesses on meds-- no one said HIV meds prevents anyone from getting sick--although it sure does reduce the possibility.  Some have problems due to long-term infection and all the drugs from the past.  KS and lymphoma are rare with high CD4s, but do happen to some.  It could be some people are just more prone to get certain cancers regardless.

I really do wish you the best.  As I said before, I wish I had your balls.  What I mean is that I wish I didn't worry so much.  However, I would not want what seems to be a person living in denial about established science.

EDIT: 
I don't know why you would take a chance with your life to prove some point that you are not going to die from HIV?  You also tend to use a lot of anecdotal information to prove your point (I know this guy and he isn't dead yet).  The incidents you mention are very isolated and for every one you have, member on this forum have mentioned that they have had friends in the same boat as you who have died.  Do you think they are making that up?

Something about your posts strike me as a cry for help, especially this one.  Why would you continue to come on this site if you don't think it's basic concepts apply to you?  It would be like me posting all over a breast cancer survivor board boasting about since I don't have breast I will be just fine. 

My question for you is if you do indeed come down with an OI and are hospitalized, would you be ready to take medication at that point? 

I hope your health continues to do well and if it doesn't I hope you remember what you have learned on here.

I modified this after reading this post.  Why do you continue to post here?  Is it a cry for help?  Or, are you trying to change other's opinions?  It has to be one of these.  You are either crying out for help or you are pushing an agenda--or at the very least trying to prove some point, but I guess that is still an agenda.  If you are perfectly healthy with AIDS, then why come here?  Most of us come here for advice about health, meds, etc.  I'm not saying you shouldn't be here--I'm just curious about where you're coming from.
« Last Edit: March 16, 2010, 01:05:46 AM by tednlou2 »

Offline Miss Philicia

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Re: Why I'm not on meds
« Reply #17 on: March 16, 2010, 12:59:41 AM »
$2.99 Spumante?  egads
"Iíve slept with enough men to know that Iím not gay"

Offline skeebo1969

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Re: Why I'm not on meds
« Reply #18 on: March 16, 2010, 01:17:33 AM »



  Where do you find it for $2.99?  You shopping at garage sales or something?
I despise the song Love is in the Air, you should too.

Offline red_Dragon888

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Re: Why I'm not on meds
« Reply #19 on: March 16, 2010, 01:51:42 AM »
Good luck and may you outlive us all.

P.S.  Not everyone on this forum take meds.  (or at least so I believe) It is a hard choice to start and a hard choice not to start.  However, if you are physical healthy then I wish you well.
« Last Edit: March 16, 2010, 01:57:36 AM by red_Dragon888 »
http://www.youtube.com/watch?feature=player_embedded&v=I3ba3lnFHik

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

Offline anniebc

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Re: Why I'm not on meds
« Reply #20 on: March 16, 2010, 01:58:24 AM »
I was actually going to take the time and read your post for once but you lost me at:


Quote
OK class, let's review

We are a group of intelligent people not a classroom full of idiots...please do not treat us as such.

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

Offline Angel-Ronnie

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Re: Why I'm not on meds
« Reply #21 on: March 16, 2010, 05:02:12 AM »
 Disability and work Question
ę on: Yesterday at 04:50:09 pm Ľ  by Kev72

--------------------------------------------------------------------------------

Hi, I recently tested positive and based on my CD4 count of 11 it is pretty advanced. I have a good ID doctor and will be starting Atripla this coming Wed. I have been lucky and have not had any major health issues. I am taking Bactrim and Zithromax.
Prior to testing poz, I had a lot of minor issues such as fatigue, unable to sleep, blurred vision, and now with taking the antibiotics my stomach has been pretty bad.
My question is about being out of work. This is all very new to me and I am stressed because I work 13 hour shifts 4 days per week from 6:00 PM until 7:00 AM and over the past few months, it has become almost impossible to work because of feeling fluish all the time and working in a 68 degree computer area. I am always freezing and feel like hell. When I leave work and try to go home and sleep, I fall asleep for an hour then wake up. I have tried everything to sleep and nothing works. I am like a zombie most of the time. Prior to being diagnosed, I just dealt with feeling crappy all the time, but now I am very concerned because of the lack of CD4s. I want to talk to my doctor about taking some time off to start the meds and hopefully feel better. I am really torn because I have never been out and I feel guilty leaving my coworkers in a bind. This will cause a big problem for them.
I am also stressing because I don't even know how disability works. I have a 40% STD and pay for additional 60% which gets taken out of each check. I don't even know how this works. I also don't know if I will be able to continue health ins. while on STD or will I have to pay COBRA fee's. This is all very difficult because I have a large mortgage and car payments etc. I would much rather be working and not create a financial disaster, but it is becoming really difficult. Has anyone else been in this type of situation? Should I just push myself to continue working, or take some time off.
Any info would be really appreciated. Thanks


So my question is he acknowledge that he is starting meds and etay you  are so ignorant as i do think you are playing with your  own life here
Bide the Wiccan law ye must,
In perfect love and perfect trust
Eight words the Wiccan Rede fulfill
An' ye harm none, do what ye will.

What ye send forth comes back to thee,
so ever mind the Law of three,
follow this with mind and heart,
Merry ye meet, and merry ye part.

Offline tommy246

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Re: Why I'm not on meds
« Reply #22 on: March 16, 2010, 05:26:20 AM »
Spumante is very good and cheap here in spain
jan 06 neg
dec 08 pos cd4 505 ,16%, 1,500vl
april 09 cd4 635 ,16%,60,000
july 09 ,cd4 545,17%,80,000
aug 09,hosptal 18days pneumonia cd190,225,000,15%
1 week later cd4 415 20%
nov 09 cd4 591 ,vl 59,000,14%,started atripla
dec 09  cd4 787, vl 266, 16%
march 2010  cd4 720 vl non detectable -20  20%
june 2010  cd4  680, 21%, ND

Offline TabooPrincess

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Re: Why I'm not on meds
« Reply #23 on: March 16, 2010, 05:44:50 AM »
You are so selfish.  There are people in Africa (and elsewhere) who would give their left leg to get the medication which would help preserve their life.  Why on earth do you think you are an exception to years of expensive medical research. 
09/ 2008 - Seroconversion
11/2008 - Tested pos, cd4 640 vl 25400
12/2008 - cd4 794 vl 27798, 35%
03/2009 - cd4 844 vl 68846, 35%
06/2009 - cd4 476 vl 49151, 33% (pregnancy confirmed)
08/2009 - cd4 464 vl 54662, 32%
Started meds for pregnancy (Kaletra, AZT, Viread)
09/2009 - cd4 841 vl 3213, 42%
10/2009 - cd4 860 vl 1088, 41%
11/2009 - cd4 771 vl 563, 38%
12/2009 - cd4 885 vl 151 42%
Discontinued meds after baby born
02/2010 - cd4 841 vl 63781, 38%
05/2010 - cd4 1080 vl 113000, 39%
08/2010 - cd4 770 vl 109242
12/2010 - cd4 642 vl 111000, 34%
06/2011 - cd4 450 vl 222000, 33%
11/2011 - cd4 419 vl 212000, 24%
03/2012 - cd4 280 vl 118000, 26% (repeated Cd4 at 360)
05/2012 -cd4 360 vl 99,190
10/2012 Atripla, cd4 690, vl 80
12/2012 Darunavir, norvir, truvada, Cd4 680, vl u/d
07/2013 cd4 750,ud

Offline RapidRod

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Re: Why I'm not on meds
« Reply #24 on: March 16, 2010, 05:52:32 AM »
One word- IGNORANCE

Offline Matty the Damned

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Re: Why I'm not on meds
« Reply #25 on: March 16, 2010, 05:53:33 AM »
You are so selfish.  There are people in Africa (and elsewhere) who would give their left leg to get the medication which would help preserve their life.  Why on earth do you think you are an exception to years of expensive medical research. 

Respectfully, Etay not taking medication doesn't deprive those in the developing world access to HAART. Moreover informed consent is the most important aspect of modern western medicine. Etay is free to eschew medications should he wish to do so. Treatment cannot be forced upon a consenting adult.

It is, however, regrettable that his inexorable decline into advanced HIV disease will place a significant burden on an already overstretched health system. A burden which could be avoided.

Still that's his choice.

MtD

Offline TabooPrincess

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Re: Why I'm not on meds
« Reply #26 on: March 16, 2010, 06:08:17 AM »
My point was more one of confusion - I can't imagine if you offered someone life saving meds that they would refuse them.  I can't get my head around that.  It's a tough one because if someone were deemed as a risk to themself or others in a mental capacity then they would be seen as lacking the ability to consent, sectioned and medication can be forced upon them. 
09/ 2008 - Seroconversion
11/2008 - Tested pos, cd4 640 vl 25400
12/2008 - cd4 794 vl 27798, 35%
03/2009 - cd4 844 vl 68846, 35%
06/2009 - cd4 476 vl 49151, 33% (pregnancy confirmed)
08/2009 - cd4 464 vl 54662, 32%
Started meds for pregnancy (Kaletra, AZT, Viread)
09/2009 - cd4 841 vl 3213, 42%
10/2009 - cd4 860 vl 1088, 41%
11/2009 - cd4 771 vl 563, 38%
12/2009 - cd4 885 vl 151 42%
Discontinued meds after baby born
02/2010 - cd4 841 vl 63781, 38%
05/2010 - cd4 1080 vl 113000, 39%
08/2010 - cd4 770 vl 109242
12/2010 - cd4 642 vl 111000, 34%
06/2011 - cd4 450 vl 222000, 33%
11/2011 - cd4 419 vl 212000, 24%
03/2012 - cd4 280 vl 118000, 26% (repeated Cd4 at 360)
05/2012 -cd4 360 vl 99,190
10/2012 Atripla, cd4 690, vl 80
12/2012 Darunavir, norvir, truvada, Cd4 680, vl u/d
07/2013 cd4 750,ud

Offline Matty the Damned

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Re: Why I'm not on meds
« Reply #27 on: March 16, 2010, 06:14:02 AM »
My point was more one of confusion - I can't imagine if you offered someone life saving meds that they would refuse them.  I can't get my head around that.  It's a tough one because if someone were deemed as a risk to themself or others in a mental capacity then they would be seen as lacking the ability to consent, sectioned and medication can be forced upon them. 

Princess, I appreciate what you're saying. Etay's decisions seem perplexing, but they don't mean he's taken leave of his faculties. Sane adults make dumb decisions all the time.

Only a few short years ago I refused treatment myself and I've reaped the bitter harvest of that stupid decision ever since. My immune system is permanently damaged.

But it was my choice. Freely made in ignorance, but freely made nonetheless.

MtD

Offline TabooPrincess

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Re: Why I'm not on meds
« Reply #28 on: March 16, 2010, 06:18:17 AM »
My partner put off taking meds (some level of denial) and the only thing that prompted him to start the medication was because he got thouroughly pissed off with being so tired, to the point where he couldn't even get off the sofa (Cd4 around 50 at the time) - and eventually hospitalised.  Maybe some people just need to feel it first before they realise why medication is necessary and how it works.
09/ 2008 - Seroconversion
11/2008 - Tested pos, cd4 640 vl 25400
12/2008 - cd4 794 vl 27798, 35%
03/2009 - cd4 844 vl 68846, 35%
06/2009 - cd4 476 vl 49151, 33% (pregnancy confirmed)
08/2009 - cd4 464 vl 54662, 32%
Started meds for pregnancy (Kaletra, AZT, Viread)
09/2009 - cd4 841 vl 3213, 42%
10/2009 - cd4 860 vl 1088, 41%
11/2009 - cd4 771 vl 563, 38%
12/2009 - cd4 885 vl 151 42%
Discontinued meds after baby born
02/2010 - cd4 841 vl 63781, 38%
05/2010 - cd4 1080 vl 113000, 39%
08/2010 - cd4 770 vl 109242
12/2010 - cd4 642 vl 111000, 34%
06/2011 - cd4 450 vl 222000, 33%
11/2011 - cd4 419 vl 212000, 24%
03/2012 - cd4 280 vl 118000, 26% (repeated Cd4 at 360)
05/2012 -cd4 360 vl 99,190
10/2012 Atripla, cd4 690, vl 80
12/2012 Darunavir, norvir, truvada, Cd4 680, vl u/d
07/2013 cd4 750,ud

Offline Matty the Damned

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Re: Why I'm not on meds
« Reply #29 on: March 16, 2010, 06:21:53 AM »
My partner put off taking meds (some level of denial) and the only thing that prompted him to start the medication was because he got thouroughly pissed off with being so tired, to the point where he couldn't even get off the sofa (Cd4 around 50 at the time) - and eventually hospitalised.  Maybe some people just need to feel it first before they realise why medication is necessary and how it works.

It's awful to see someone who's clearly intelligent and has such wonderful things to offer waste themselves so pointlessly.

But what can you do? The measure of freedom is found in fuckwittery, I guess.

MtD
(Who is a prescription strength fuckwit)

Offline mecch

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Re: Why I'm not on meds
« Reply #30 on: March 16, 2010, 07:23:41 AM »
I can accept your rationale as true for you and it doesn't bother me in this forum. But I have a hard time believing what you say about your doctor.  I believe that you are so deeply in your denial, your rationale, that you must not be listening to what ALL doctors and science is saying. Otherwise, you heard what she said - you need HAART - and you are lying here that she doesn't want to see you anymore, test you anymore, etc.
Then again, maybe she just gave up on you.

Do you know, that some psychiatrists refuse to treat pathological narcissists because they cannot be cured in therapy and its a colossal waste of professional time.  Maybe your doctor has just thrown you away, as a lost cause.

Just remember - the scientific community and western medicine builds a common knowledge based on millions and millions of hours of combined research and study and scientific method.  You are gonna compete with this?  With your small group of denialists?

I think few people have a personal animosity for you up to the point where they think that you could hurt others.  Christine Maggiore hurt others.

ďFrom each, according to his ability; to each, according to his needĒ 1875 K Marx

Offline metekrop

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Re: Why I'm not on meds
« Reply #31 on: March 16, 2010, 08:03:14 AM »
Oh my man ... we all was like you.  Strong, working vigorously, athletic, enjoying, healthy etc.  But the day come in when we should bend to a disease.  Mark my words.  The days are near to you when you should be regretful  of what you are thinking of yourself now.

 ::)
Diag on Dec 8, 2000, CD 440 VL 44K, No Meds
Dec/08 - Feb/09 CD< 50 & VL >500k hosp'z.
St. Atripla - July/09 CD 179, VL 197k
Oct/09 CD 300 VL UD Chol 267
Mar/10 CD 468 UD, Ch 220
Aug/10 CD 460 UD, Ch 195
Dec/10 CD 492 UD, Ch 172
Mar/11 CD 636 UD, Ch 201
Aug/11 CD 530 UD, Ch 98
Jan/12 cd 616 UD, ch 189
Jul/12 CD 640 UD, Ch ?
Dec/12 CD 669 Ud, Ch 125
May/7 CD711 Ud, Ch?
Nov/ 22 663 UD, Ch,
April 17 CD 797,
Oct, 14 CD 810 UD

Offline skeebo1969

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Re: Why I'm not on meds
« Reply #32 on: March 16, 2010, 09:26:11 AM »
I know many of you have been waiting for me to write this so you can ban me from posting. Maybe I just need to vent a little. Someone just posted on here with a CD4 count of 11. It'll be one thing if he's in the hospital with PCP, but he's not. He's working 13 hours a day! Ok class, let's review...when your tcells are <200 it means that you ALREADY have immuno deficiency. Not that you are in danger of having a compromised immune sysyem. YOU ALREADY HAVE IT! (according to the CDC).   Now divide that number by 20 and you'll get Kev's tcell count. Am I missing something here? If you multiplied his tcells by 20 he would STILL HAVE AIDS!!!  How is he able to work 13 hours a day! And his only complaint is fatigue! Of course he's gonna be fatigued working the midnight shift.  Our bodies are designed to SLEEP at night. 
    I have my own story. I don't know Kev so he could be lying about not having any OI's.  But I live with myself everyday. My tcells were 50 last month. If you multiplied my tcells 4x I would STILL be classified as having Immuno Deficiency. Why am I working 14 hours a day? Why am I able to run every morning and workout during the day. Not to toot my own horn but people admire my body all the time. They are shock to find out that I have AIDS.  My viral load is VERY high as you all know. You will have a hard time convincing me that I am sick when my body is telling me otherwise. My chest pains went away when I got back to running everyday. We thought maybe HIV was affecting my heart just to find out I wasn't farting enough!
    I read through these post just about everyday for they are a wealth of information of real life experiences. As I read through the forums I notice alot of you with higher tcell counts are sick. Alot of you are on disability. And several of you are dealing with OI's such as thrush and KS inspite of your "normal" CD4 counts. After all the reading and studying I've done on HIV I'm not convinced that a lack of tcell  is the culprit. Alot of you were diagnosed while sick and ur tcell counts were low. My question would be - were you sick because of a low count, or is the low count a result of you being sick? We already know that ur tcell count is affected by sickness.   
    My rant is just about done. Kev and I are examples of people who are healthy with low tcell counts. And you guys will debate whether we're healthy or not til Jesus comes (if he comes). I have a few friends who are in the same boat as I am but they are denialist so their testimonies are invalid on these forums. But the fact remains, they are alive without OI's! There are many denialist who have died and there are many who took the meds and died.   
  Another issue I have that bothers me. I am seen on these forums as such a horrible and misguided person because I made a conscience decision not to take HAART.  I want to meet you guys in Vegas but get the feeling that I won't be welcomed. I've been encouraged by quite a few people on here to keep quiet and "how dare I question the medical community". I had to fight with my doctor just to get labs done last month. She would rather NOT KNOW than to admit that maybe...just maybe CD4 count is a poor indicator of immune function. She encouraged me to stop monitoring my CD4's since I wasn't on meds. I definetly would want to know if there were healthy people with a low CD4 count. For one thing, it would dispel alot of fear associated with being HIV+. The problem I have with many denalist is that they stop getting their numbers checked. I know of MANY who have been HIV+ over 10 years and not on drugs but are healthy. But it doesn't help someone to not know if they are in the AIDS zone or not. You could argue that their tcells are high and that's why they aren't sick.  That's why I continue to monitor my numbers. Nobody can deny that I have AIDS! My tcell count says it, my CD% screams it, my VL is scary! Why am I not sick?

  You say this is a rant.  What would that rant be about Etay?  What exactly is your qualm per say?  Are you angry at yourself because you are unable to follow proven medical advice or is that you are angry that we believe what we do?

  You say you would like to find others with low Cd4's like yourself who are healthy so "it would dispel alot of fear associated with being HIV+".   Please do us a favor and keep your theory about you.  We do not send that kind of message here.  That's for the other board you frequent.

  Good luck to you .

  Thomas
 
I despise the song Love is in the Air, you should too.

Offline Ann

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Re: Why I'm not on meds
« Reply #33 on: March 16, 2010, 11:33:33 AM »
Etay, I think I've told you before - the only way you'll be banned is if you disregard our forum rules and Terms of Membership concerning denialist material. Although you have decidedly denialist leanings, you haven't been posting their twisted, misconstrued versions of science. If you do start posting such misinformation, you WILL be outta here, no doubt about that. Or if I find you're using PMs for this purpose.

I hope it never comes to this because one day, perhaps very soon, you're going to need this site for moral and informational support.

You say you know denialists who have been poz for ten years and they are still without meds. I've been poz for coming up on thirteen years (in May) and I'm not on meds myself, but that's not because I'm a denialist or IN denial, it's just because my numbers, unlike yours, are good. I will most definitely take the meds when my numbers indicate the need.

There are plenty of denialist who never took the meds and are now six feet under. Have a look at this list of dead denialists. And those are just the ones who were infamous for their outspokenness. We'll probably never know the true extent of denialist deaths where their followers are concerned.

Please, Etay, I implore you to spend some time on the website I linked to above, so you can discover the lies you have been fed by denialist. Your life depends on it.

Ann
Condoms are a girl's best friend

Condom and Lube Info  



"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline Joe K

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Re: Why I'm not on meds
« Reply #34 on: March 16, 2010, 12:24:45 PM »
Nobody knows why you are not sick, but we also have no real idea of your health status, because most of your talk is just riddles. You seem to have no problem making outlandish claims, but you have provided nothing to prove, nor disprove anything. You seem to think that just because you can work and exercise, etc., that HIV is not slowly killing you, but most of us know better.

Personally, I wish you nothing but the best, however, my time is better spent supporting those members who understand the truth regarding HIV. It is obvious, through your postings, that you are looking to convince others, that somehow you are special, but you have provided absolutely nothing to substantiate that claim.

Offline GSOgymrat

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Re: Why I'm not on meds
« Reply #35 on: March 16, 2010, 01:12:17 PM »
I know that my responding to this thread is wasted pixels on a screen but:

Just because you are not sick doesn't mean CD4 is not an indicator of immune function.

You are a case study of 1, Etay.

Offline AlanBama

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Re: Why I'm not on meds
« Reply #36 on: March 16, 2010, 03:26:03 PM »
AIDS has a funny way of showing what it will do to you if you ignore it

(it involves lots of hospitalizations and many IV drugs)

My dad had a funny, but appropriate saying:   "Keep on, cat shit; someone will cover you up!"
"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 Miss Philicia

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Re: Why I'm not on meds
« Reply #37 on: March 16, 2010, 05:03:12 PM »


  Where do you find it for $2.99?  You shopping at garage sales or something?

Step it up, sweetie

http://www.taittinger.com/
"Iíve slept with enough men to know that Iím not gay"

Offline Miss Philicia

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Re: Why I'm not on meds
« Reply #38 on: March 16, 2010, 05:05:38 PM »
One word- IGNORANCE

He's not ignorant -- I think it's more of a DSM-IV Code issue.  Shall we select one?
"Iíve slept with enough men to know that Iím not gay"

Offline mecch

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Re: Why I'm not on meds
« Reply #39 on: March 16, 2010, 06:15:27 PM »
http://en.wikipedia.org/wiki/Delusional_disorder

that would be the basic one.


but also there is the fetish for persecution when none exists.  feeling like an persecuted outsider and heroically iconoclastic or countercultural, when in fact the culture is basically live and let live. 
ďFrom each, according to his ability; to each, according to his needĒ 1875 K Marx

Offline RapidRod

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Re: Why I'm not on meds
« Reply #40 on: March 16, 2010, 07:32:28 PM »
He's not ignorant -- I think it's more of a DSM-IV Code issue.  Shall we select one?
313.81 my first pick.

Offline rmgjunk

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Re: Why I'm not on meds
« Reply #41 on: March 16, 2010, 07:55:06 PM »
Etay,

You are not guaranteed an OI or death when you have a low tcell count.  But each day you roll the dice, and every day that your tcell count is low the dice are loaded against you.   Look at the first chart  in this link http://hivinsite.ucsf.edu/InSite-KB-ref.jsp?page=kb-03-01-04&ref=kb-03-01-04-fg-02&no=2   Everyone does not get AIDS or die the year they have a CD4 count under 200 and a high viral load.  But within 2 years over 60% do.  And then 80% and then 90%.

As Assurbanipal said, a low t-cell count will increase the likelyhood that you get an infection, and more importantly will decrease your chances of recovering from it.  Viral infections are particularly nasty in that scenario, as many (most?) viral infections have to be dealt with by our own immune systems - drugs usually only help, instead of attacking the virus directly, as antibiotics do to bacteria.

It's unusual for an young adult to get killed by the flu, but it's far more common for the elderly to do so.  As we age, our immune systems and general health decline.  Think of HIV as an express way to a really old and ineffective immune system.  HAART slows down this decline.

One of the things that chart shows is that we can expect, with those kind of numbers, that some people will be lucky like you have been so far -- but the chart shows that for most of those people the luck DOES NOT LAST.

The 200 CD4 count and other guidelines result from the compilation of years of medical practice by physicians and researchers.  It's an statistical fact, and as such it applies to populations, not to individuals - each individual either gets sick, or not, not 80% or 90% sick.  Very few things in biology obey precise rules, if any.  Take HIV infection, for instance: some people get infected from a single unprotected intercourse, while others have several exposures and don't get infected.  But eventually, and inevitably, we stop being exceptions and become statistics.

Regards,
Roger
14-Sep-2009 Tested positive
Last labs: VL <47, CD4 441/29%
Current meds: AZT, 3TC, Nevirapine

Offline Rev. Moon

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Re: Why I'm not on meds
« Reply #42 on: March 16, 2010, 08:02:22 PM »
Honestly at this point I couldn't care less whether Etay starts meds or not; it is his decision and he will simply live or die with it.  As long as he doesn't bring denialist rubbish around here he can open as many new threads as he likes and post daily video updates if that's what tickles his pickle.  

It is evident that no scientific or historical data is going to change this young man's mind. The replies that well-meaning members write are no more than wasted key-strokes and bandwidth at this point.

The only interesting thing about this thread is the digression about cheap champagne.
"I have tried hard--but life is difficult, and I am a very useless person. I can hardly be said to have an independent existence. I was just a screw or a cog in the great machine I called life, and when I dropped out of it I found I was of no use anywhere else."

Offline WillyWump

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Re: Why I'm not on meds
« Reply #43 on: March 16, 2010, 08:08:40 PM »
  I want to meet you guys in Vegas but get the feeling that I won't be welcomed.

Agreed. But I only say that because while you may be welcomed, you would probably spend a fair amount of time alone because no one wants to spend their vacation time listening to this bunk. Just my opinion, perhaps I'm wrong.

-Will
POZ since '08

Last Labs-
6/3/14 CD4- 736, UD 34%
6/25/13 CD4- 1036, UD,
2/4/13, CD4 - 489, UD, 28%

Current Meds: Prezista/Epzicom/ Norvir
.

Offline Miss Philicia

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Re: Why I'm not on meds
« Reply #44 on: March 16, 2010, 08:43:30 PM »

The only interesting thing about this thread is the digression about cheap champagne.

And it just got LOADS better!

MISS P ftw++
"Iíve slept with enough men to know that Iím not gay"

Offline WillyWump

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Re: Why I'm not on meds
« Reply #45 on: March 16, 2010, 08:44:51 PM »
Step it up, sweetie

http://www.taittinger.com/

Well I'm cheap, and an even cheaper date.

-Will
POZ since '08

Last Labs-
6/3/14 CD4- 736, UD 34%
6/25/13 CD4- 1036, UD,
2/4/13, CD4 - 489, UD, 28%

Current Meds: Prezista/Epzicom/ Norvir
.

Offline Rev. Moon

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Re: Why I'm not on meds
« Reply #46 on: March 16, 2010, 08:49:06 PM »
And it just got LOADS better!

MISS P ftw++

Gurl, pop that baby open and invite your boy Antonio over for drinks (and don't forget a fresh bottle of poppers).
"I have tried hard--but life is difficult, and I am a very useless person. I can hardly be said to have an independent existence. I was just a screw or a cog in the great machine I called life, and when I dropped out of it I found I was of no use anywhere else."

Offline Miss Philicia

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Re: Why I'm not on meds
« Reply #47 on: March 16, 2010, 09:17:11 PM »
Gurl, pop that baby open and invite your boy Antonio over for drinks (and don't forget a fresh bottle of poppers).

Oh dear no -- that bitch spills bottles all over my pricey coffee table books.  $300 Julius Shulman book just ruined.  My entire apartment smelled like dirty socks today -- totally had to fumigate the place.  Good things his cock is enormous or I'd kick huh to the curb.

Plus it was a bottle of imported FIST brand from London!
"Iíve slept with enough men to know that Iím not gay"

Offline Rev. Moon

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Re: Why I'm not on meds
« Reply #48 on: March 16, 2010, 09:23:32 PM »
Plus it was a bottle of imported FIST brand from London!

Hellz naww... homeboy needs to repay with sexual favors for the next six months (minimum).
"I have tried hard--but life is difficult, and I am a very useless person. I can hardly be said to have an independent existence. I was just a screw or a cog in the great machine I called life, and when I dropped out of it I found I was of no use anywhere else."

Offline Okealyshire

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  • Posts: 139
Re: Why I'm not on meds
« Reply #49 on: March 16, 2010, 09:24:15 PM »
My entire apartment smelled like dirty socks today -- totally had to fumigate the place.

Next time try the "room deodorizer" brand. :)

 


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