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Author Topic: Why I'm not on meds  (Read 11432 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!

Offline bmancanfly

  • Member
  • Posts: 580
  • 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

  • Member
  • 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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  • Ninja Please
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

  • Member
  • 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: 7,184
  • your ramblings bore Yamaguchi Kitteh
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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  • Posts: 4,136
  • 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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  • Posts: 24,110
  • 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

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  • Posts: 7,184
  • your ramblings bore Yamaguchi Kitteh
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

  • Member
  • Posts: 4,887
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

  • Member
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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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  • celebrity poster, faker & poser
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, 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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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. :)

Offline Etay1207

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Re: Why I'm not on meds
« Reply #50 on: March 16, 2010, 10:31:50 PM »
Willywump, we talk enough HIV/AIDS talk on here. Why don't we just hit da bars and have a good time? I've never gambled before. Maybe I'll win big! I also wanna work on my tan. Who knows, I might just wanna get hitched in Vegas.

It's obvious you guys have the wrong impression of me. I'm not evangelical. Meaning I don't believe that it's my job to save the world. There are differences in opinion and beliefs and I respect those that are different than my own. The fact remains, most of my close friends are on HAART and I FULLY support their decision. All the while choosing not to take it. My friends don't even know why I have chosen not to take ARV's. I don't speak about it in my videoes or when I speak in church about my condition. 

The main purpose of this tread is to get more of an understanding of what the numbers mean. So far they don't make sense to me. How can someone with and UD VL and CD4 in the 500 range get KS and it be attributed to HIV when I have a VL of over 300k and have no KS. In my mind, someone who's UD shouldn't be getting ANY OI's.
      If someone with a tcell count of 200 catch pnemonia and they have it because their CD4 counts are so low.  I'm thinking that I should catch pnemonia 4 times before they catch it once. Because they have 4x the immune function I have.
     This is the problem I'm having with these numbers. Please explain this to me.
    To answer your question about me starting HAART, of course I will take the drugs if I see that I need them. I always been a healthy person. If I start getting infections common sense will tell me that something's wrong. If I just get pnemonia, it doesn't even have to be PCP, I would consider HAART.  For me to rarely catch colds, getting pnemonia would be a big deal.  I haven't even had the flu in the past 4 years.  So anything worse than a cold or flu would convince me that I'm immunodeficient. 
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!

Offline RapidRod

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Re: Why I'm not on meds
« Reply #51 on: March 16, 2010, 10:47:38 PM »
Willywump, we talk enough HIV/AIDS talk on here. Why don't we just hit da bars and have a good time? I've never gambled before. Maybe I'll win big! I also wanna work on my tan. Who knows, I might just wanna get hitched in Vegas.

It's obvious you guys have the wrong impression of me. I'm not evangelical. Meaning I don't believe that it's my job to save the world. There are differences in opinion and beliefs and I respect those that are different than my own. The fact remains, most of my close friends are on HAART and I FULLY support their decision. All the while choosing not to take it. My friends don't even know why I have chosen not to take ARV's. I don't speak about it in my videoes or when I speak in church about my condition. 

The main purpose of this tread is to get more of an understanding of what the numbers mean. So far they don't make sense to me. How can someone with and UD VL and CD4 in the 500 range get KS and it be attributed to HIV when I have a VL of over 300k and have no KS. In my mind, someone who's UD shouldn't be getting ANY OI's.
      If someone with a tcell count of 200 catch pnemonia and they have it because their CD4 counts are so low.  I'm thinking that I should catch pnemonia 4 times before they catch it once. Because they have 4x the immune function I have.
     This is the problem I'm having with these numbers. Please explain this to me.
    To answer your question about me starting HAART, of course I will take the drugs if I see that I need them. I always been a healthy person. If I start getting infections common sense will tell me that something's wrong. If I just get pnemonia, it doesn't even have to be PCP, I would consider HAART.  For me to rarely catch colds, getting pnemonia would be a big deal.  I haven't even had the flu in the past 4 years.  So anything worse than a cold or flu would convince me that I'm immunodeficient. 
There is no doubt that you will contract an OI  or more than likely, more than one OI at the same time.

Offline PeteNYNJ

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Re: Why I'm not on meds
« Reply #52 on: March 16, 2010, 10:56:50 PM »
Why do some people with a healthy immune system get the flu and others don't?  Why do some people get any disease?  We don't live in bubbles, so there are other factors at work regarding whether or not someone will acquire a disease or infection (exposure, past inoculations, other conditions/virus we are infected with, etc).

What everyone here is trying to explain to you is since you are immune compromised, when you do get exposed to one of these OIs, your body is at a great disadvantage to try to fight the condition.  This whole "waiting to get sick to prove you are sick" is very foolish and dangerous.  You may come down with something that your body can't fight off even with the help of medications because it is just too weak.  

Maybe it would be best for you to talk to a clinician about the "why's" behind illness or pick up a good basic biology book - don't rely on individual stories about people because you will never know all the factors at work that lead to their disease progression.  No one knows completely.  And that is the fact with any disease.
« Last Edit: March 16, 2010, 10:58:27 PM by PeteNYNJ »

Offline edfu

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Re: Why I'm not on meds
« Reply #53 on: March 17, 2010, 12:48:19 AM »
How can someone with and UD VL and CD4 in the 500 range get KS and it be attributed to HIV when I have a VL of over 300k and have no KS. In my mind, someone who's UD shouldn't be getting ANY OI's.
 

Kaposi's sarcoma is not a good example to use to buttress your argument, because it can occur at any CD4 level and any VL measurement, which is not the case with most of the "classic" opportunistic infections, which usually occur only at very low CD4 levels, scientifically recognized as less than 200.  KS is endemic in Africa and is historically recognized as occurring in elderly men of Mediterranean extraction.  KS can occur in HIV-negative persons, and there is some evidence that it is becoming more frequent both in HIV-positive gay men with good CD4 levels and suppressed viral load and even in HIV-negative gay men.

http://www.sfgate.com/cgi-bin/article.cgi?f=/c/a/2007/10/12/MNEESOFRG.DTL&tsp=1    

http://www.aidsmap.com/en/news/999D3BD3-DA40-4442-B307-808F3AA9596D.asp

KS is directly caused by HHV-8 (Human Herpesvirus Type-8).  Most gay men are infected with HHV-8, but most gay men--both HIV-positive and HIV-negative--will not contract KS.  The relationship between HHV-8 and HIV is not completely understood, but it is believed that complicated chemical relationships between the two viruses are responsible for the occurrence of KS.  Historically, in the early days of the HIV epidemic, when so many contracted KS, it is now understood that the causative factors were low CD4 counts and high viral load.  This remains true, but now it is recognized that these factors are not alone sufficient for KS to appear.  
« Last Edit: March 17, 2010, 12:52:41 AM by edfu »
"No one will ever be free so long as there are pestilences."--Albert Camus, "The Plague"

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Offline Assurbanipal

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Re: Why I'm not on meds
« Reply #54 on: March 17, 2010, 07:28:21 AM »
It's obvious you guys have the wrong impression of me. I'm not evangelical. ...
The main purpose of this tread is to get more of an understanding of what the numbers mean. So far they don't make sense to me. How can someone with and UD VL and CD4 in the 500 range get KS and it be attributed to HIV when I have a VL of over 300k and have no KS. In my mind, someone who's UD shouldn't be getting ANY OI's.
      If someone with a tcell count of 200 catch pnemonia and they have it because their CD4 counts are so low.  I'm thinking that I should catch pnemonia 4 times before they catch it once. Because they have 4x the immune function I have.
     This is the problem I'm having with these numbers. Please explain this to me.
    To answer your question about me starting HAART, of course I will take the drugs if I see that I need them. I always been a healthy person. If I start getting infections common sense will tell me that something's wrong. If I just get pnemonia, it doesn't even have to be PCP, I would consider HAART.  For me to rarely catch colds, getting pnemonia would be a big deal.  I haven't even had the flu in the past 4 years.  So anything worse than a cold or flu would convince me that I'm immunodeficient. 

Actually, the impression you have given (me, at least) is that you have a very Newtonian worldview, very mechanistic, balls on a pool table /cause and effect / electron circling the core of an atom ... 

But that way of thiinking, while very usefull sometimes, doesn't explain lots of everyday events.  Sometimes you need to think with a quantum worldview, to replace that image of an electron circling the core with a negatively charged probability cloud around a much denser positively charged probability cloud.

Pretty abstruse...

But it is relevant to your questions.

You are not guaranteed an OI.  You have a chance of it, a dice roll.  The lower your tcell count the more the dice are loaded against you.  But you still get to roll and maybe get lucky.

You keep wondering why you are healthy and looking for a cause.  Why are you so unique?

Well, that chart I linked to shows that you that people in your situation are not unexpected.  If we had 100 people with your tcell counts from a couple of years ago and withheld HAART from them for two years, 40 of you would be looking around thinking you had some special ability.  But we would have expected there to be 40 of you -- it wasn't that you were special, just blind luck.

But you look around nowadays and search for the other 39 people and you can't find them.  Does that make you unique?  Well, only in a certain mulish resistance to giving up a Newtonian worldview.  The other 39 accepted that they didn't want to roll the dice in a quantum world and went on HAART.

And if there were 10 of you on this board, all protesting how unique you were, over a couple of years we would expect 8 or 9 to die or get sick (more, because the odds just get worse and worse ).  But the remaining one would still be telling us they are special because they used some weird unregulated supplement, or applied positive thinking or some other unlikely excuse for the failure to be able to recognize dumb luck.
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 mecch

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Re: Why I'm not on meds
« Reply #55 on: March 17, 2010, 10:35:53 AM »
ETAY - you have mentioned several times that you have many HIV+ friends taking HAART.

So have you joined this forum exactly? 

I joined to learn more from people who have HIV+.  There are a few members like me, and then many members with all kinds of experiences very different than mine. Different experiences with HIV and different personalities to give a different perception of things. 

Plus there are fun threads.
ďFrom each, according to his ability; to each, according to his needĒ 1875 K Marx

Offline tokyodecadence

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Re: Why I'm not on meds
« Reply #56 on: March 17, 2010, 07:53:39 PM »
If I recall, you said in your video that you had a PARASITIC infection.

Here is a definition, taken from this website:

http://www.answers.com/topic/parasitic-infections

Parasites are organisms that live inside humans or other organisms who act as hosts. They are dependent on their hosts because they are unable to produce food or energy for themselves. Parasites are harmful to humans because they consume needed food, eat away body tissues and cells, and eliminate toxic waste, which makes people sick.

"Because of sanitary living conditions in America, parasites do not cause widespread life-threatening infections. In other parts of the world, however, parasitic infections are epidemic. They kill and disable millions of people every year. Parasitic infection cases in the United States are on the rise due to increased travel to and from underdeveloped countries. In addition, parasitic infections can cause severe infections in AIDS patients and other patients with weakened immune systems."


So, once again: Your numbers + You already becoming sick = you don't understand and choose not to begin medication? I'm thinking no. Also, none of this statement makes any sense.
     If someone with a tcell count of 200 catch pnemonia and they have it because their CD4 counts are so low.  I'm thinking that I should catch pnemonia 4 times before they catch it once. Because they have 4x the immune function I have.  




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Offline darkerpozz

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Re: Why I'm not on meds
« Reply #57 on: March 24, 2010, 06:27:41 PM »

Etay,
I now have seen something in that you are continually spouting your numbers and stating your healthy, THAT IS GREAT,but it will not last. With all the work you do I hope your saving for the hospital stay went which could have been prevented. I do wish you the best and hope you are not an entertainer cause refunding money cause you suddenly drop can get pricey and disheartening. I speak from experience. Take care and keep believing in whatever it is you do cause for now it's working, keep his number on speed dial, for later. What sign are you by the way...just for shits and giggles,

Offline ATorrez

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Re: Why I'm not on meds
« Reply #58 on: March 24, 2010, 06:52:26 PM »
Etay,

I am new to these forums, if you want to talk to me I will not judge you.

What I want to tell you though, is that what you're doing is not going to last. I know it may seem kind of like we are all "hexing" you, but we want you to survive, or atleast I do. Do you enjoy working at your job? Imagine if in a few months you had to quit your job and get on disability because of an illness. I don't think you want to be a government bitch until you die.

I enjoy my sense of autonomy and I would rather die than take 1 cent from the government. The medications do not have that many side effects, as a matter of fact the only side effects I have ever had from the meds were lipoatrophy/lipodystrophy and osteopenia (which I may or may not have had before even being HIV+).  If you find a good doctor you could get on an NRTI sparing regimen and avoid a lot of the toxicities of the older meds.

You seem to enjoy working and I know I do too. I am a nurse and I love working with patients, it's the most rewarding job in the world. But I know if I didn't take my meds I would either not be able to go to work, or I'd not be around to.

Please do not believe denialist lies. I know I sound biased, but I used to be a denialist many years ago. I was a denialist until I almost ended up with "AIDS". I never abused alcohol, I never abused drugs, I never did any of the things that the denialists said would cause my CD4 cell count to go down.... and they still did. Please, I know it sounds like bullshit by I was in your shoes once.
Piss off a democrat: Take responsibility for your life and your actions.

"When Marxist dictators shoot their way into power in Central America, the San Francisco Democrats don't blame the guerrillas and their Soviet allies. They blame United States policies of 100 years ago. But then they always blame America first." -Jeanne Kirkpatrick

Offline Miss Philicia

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Re: Why I'm not on meds
« Reply #59 on: March 24, 2010, 07:44:43 PM »
I don't think you want to be a government bitch until you die.

I realize you're new here and probably meant nothing by this, but phrases like that describe those people on disability are frowned upon.
"Iíve slept with enough men to know that Iím not gay"

Offline Etay1207

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Re: Why I'm not on meds
« Reply #60 on: March 24, 2010, 07:50:10 PM »
tokyodecadence: True, recurrent parasitic infections are a sign of immunodefiency.  I had a parasitic infection LAST YEAR (july) that lasted ONE WEEK. Have you ever had a 'bug' before? My doctor didn't give me meds for the infection.  I didn't even get the lab result stating that it was a parasite til after the symptoms went away.  Obviously, my body fought it and got rid of it.  It's been almost a year.

mecch:  I've always had friends who were on HAART.  I follow 4 people on YouTube that are on HAART.  My boyfriend and one of his children are on HAART.  What do you mean, have I joined this forum?

Assurbanipal: You're good! I don't do well with gray areas. It's either black or white with me.  

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!

Offline Matty the Damned

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Re: Why I'm not on meds
« Reply #61 on: March 24, 2010, 08:00:43 PM »
Obviously, my body fought it and got rid of it.  It's been almost a year.

Not obviously at all. Like dreaming Cthulhu it may lie sleeping.

MtD

Offline Assurbanipal

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Re: Why I'm not on meds
« Reply #62 on: March 24, 2010, 08:34:24 PM »
Etay

I'm concerned about you -- we all are -- and I honestly think you'd benefit from thinking more about the risks and chances of becoming ill rather than thinking of it as an on/off switch and that you are fine until the switch flips up.  I was there (although I didn't know I was sick) and when the switch flips it gets miserable fast.

You know, I'm in NJ too -- I'd be glad to buy you a lunch ...if I can use it to talk you into saving your health.

Sincerely

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 Miss Philicia

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Re: Why I'm not on meds
« Reply #63 on: March 24, 2010, 08:35:50 PM »
I'm glad to hear he has an HIV+/HAARTer as a significant other.  That way there will someone in house to do the mopping up in the coming months.
"Iíve slept with enough men to know that Iím not gay"

Offline ATorrez

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Re: Why I'm not on meds
« Reply #64 on: March 24, 2010, 09:08:08 PM »
I realize you're new here and probably meant nothing by this, but phrases like that describe those people on disability are frowned upon.

I was just stating my opinion. This guy obvious enjoys working and is proud of it. And he needs to realise that he won't be able to continue that for very long.

"Government Bitch", was meant more along the lines of someone who is at the total mercy of the government all the time. That person has to deal with the government's BS, the red tape, etc. It's not a situation I want to be in and I don't mind voicing that opinion. I also wouldn't want to have paralysed limbs.
Piss off a democrat: Take responsibility for your life and your actions.

"When Marxist dictators shoot their way into power in Central America, the San Francisco Democrats don't blame the guerrillas and their Soviet allies. They blame United States policies of 100 years ago. But then they always blame America first." -Jeanne Kirkpatrick

Offline Miss Philicia

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Re: Why I'm not on meds
« Reply #65 on: March 25, 2010, 09:46:46 AM »
I was just stating my opinion. This guy obvious enjoys working and is proud of it. And he needs to realise that he won't be able to continue that for very long.

"Government Bitch", was meant more along the lines of someone who is at the total mercy of the government all the time. That person has to deal with the government's BS, the red tape, etc. It's not a situation I want to be in and I don't mind voicing that opinion. I also wouldn't want to have paralysed limbs.

The use of an offensive terms does not constitute an "opinion".
"Iíve slept with enough men to know that Iím not gay"

Offline Ann

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Re: Why I'm not on meds
« Reply #66 on: March 25, 2010, 11:34:29 AM »

I didn't even get the lab result stating that it was a parasite til after the symptoms went away.  Obviously, my body fought it and got rid of it.  It's been almost a year.


When one has an immune system as severely depleted as yours is, quite often the body makes no (or a limited) response to pathogens. This means you have no symptoms or symptoms that seem to be self-limiting.

This is why immune reconstitution inflammatory syndrome (IRIS) happens to some people who start on HAART when they have very low CD4 counts. The meds improve the immune system and it starts dealing with problems, which causes symptoms to occur.

You need to realise that in many instances, symptoms are what you feel when your immune system responds to a pathogen, they're not a result of the pathogen itself. If your immune system is too weak to deal with a pathogen, you'll still have that pathogen in your body, but you won't have any symptoms.

One very good example is ARS - acute retroviral syndrome, aka seroconversion illness. The symptoms that some people experience when first infected with hiv are not caused by the virus itself, but rather by the process the body goes through to produce antibodies. This process includes the production of interferon, and interferon in the body will give you flu-like symptoms. Just ask anyone who has taken synthetic interferon for hep C infection.

You would be wise to get tested for parasites again to make sure your body really did clear the problem. Not having symptoms - in light of your very low CD4 count - is no measure of health or bug clearance. As Matty said, the parasites could just be "sleeping".
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"...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 Ann

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Re: Why I'm not on meds
« Reply #67 on: March 25, 2010, 11:39:24 AM »

I was just stating my opinion. This guy obvious enjoys working and is proud of it. And he needs to realise that he won't be able to continue that for very long.

"Government Bitch", was meant more along the lines of someone who is at the total mercy of the government all the time. That person has to deal with the government's BS, the red tape, etc. It's not a situation I want to be in and I don't mind voicing that opinion. I also wouldn't want to have paralysed limbs.


"Government bitch" is an offensive term to many who are forced to survive on government assistance, regardless of how you meant it.

If someone came here and started gay-bashing, they would be reprimanded and possibly given a time out or banned, even if they claimed they were "just stating" their opinion.

Please be more careful about using terms like this. And please familiarise yourself with our posting guidelines, found in the main Welcome Thread. Thank you for your cooperation.

Oh, and welcome to the forums, btw. :)

Ann
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"...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 Moffie65

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Re: Why I'm not on meds
« Reply #68 on: March 25, 2010, 12:36:06 PM »
"Government Bitch", was meant more along the lines of someone who is at the total mercy of the government all the time. That person has to deal with the government's BS, the red tape, etc. It's not a situation I want to be in and I don't mind voicing that opinion. I also wouldn't want to have paralysed limbs.
Hey Torrez, I'm a government bitch as you state.
Specifically, I am a United States Army Veteran, and if it wasn't for the VA Health System, I would have been dead years ago.  I also get help for paying for my medications, I have been a government HIV/AIDS activist for about 30 years, and pretty much been reliant on the Social Security system for all of  my income.

Do I miss work?  Of course you strupid person.  Why the hell do you think I spent five years in a wheel chair?  Yes, it was because of the HIV and the medications.  Boy, you do have a load of information to learn, and if you can put some of your insipid thoughts about many of the people here behind you; you just might find it a welcoming place.  You have not started well.
The Bible contains 6 admonishments to homosexuals,
and 362 to heterosexuals.
This doesn't mean that God doesn't love heterosexuals,
It's just that they need more supervision.
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Offline Ann

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Re: Why I'm not on meds
« Reply #69 on: March 25, 2010, 12:42:44 PM »

Do I miss work?  Of course you strupid person.


Moffie, you're intelligent enough to not have to resort to name-calling to get your point across. I'm sure you're aware that name-calling in this forum is prohibited by our posting guidelines, which I referred Mr Torres to.

Mr Torres has been told that the language he used to describe people who rely on government assistance was offensive and unacceptable, so can we please end the hijack and get back to the subject at hand in this thread - Etay and not taking meds.

Thank you ALL for your cooperation.

Ann
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"...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 red_Dragon888

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Re: Why I'm not on meds
« Reply #70 on: March 25, 2010, 06:57:43 PM »
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
I agree only to the point that maybe your mental capacity is damaged and you are acting out and not really in a good mental place.  i have been there believing that everyone is wrong and that I am the only one right, but now I believe that I was so stress out most likely from the virus, that good judgement went out the window and madness was slowly creeping in.  Again, if you are doing well, then good for you, but maybe you are not paying attention to the real effects the virus is having on your system.  Being in sound mind and body is dependent on being in sound mind and body.  Otherwise, you are fooling yourself.  I am not saying to jump on the band wagon, but I am saying make sure you are in 100 % good physical and mental health.
« Last Edit: March 25, 2010, 07:00:52 PM 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 Etay1207

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Re: Why I'm not on meds
« Reply #71 on: March 25, 2010, 07:14:18 PM »
Ann, I hear what you are saying and know that is the basis for IRS. This is why that doesn't make sense to me. When you are young you get chicken pox. The symptoms go away but the virus stays in your body and only "flares up" as shingles when your immune system is compromised for some reason. PCP is caused by a fungus that is found in most people. It gives you PCP only when your immune system is not working properly.
     Pathogens come to TAKE OVER. I would be dead if my immune system had not responded.
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!

Offline Hellraiser

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Re: Why I'm not on meds
« Reply #72 on: March 25, 2010, 07:18:27 PM »
Ann, I hear what you are saying and know that is the basis for IRS. This is why that doesn't make sense to me. When you are young you get chicken pox. The symptoms go away but the virus stays in your body and only "flares up" as shingles when your immune system is compromised for some reason. PCP is caused by a fungus that is found in most people. It gives you PCP only when your immune system is not working properly.
     Pathogens come to TAKE OVER. I would be dead if my immune system had not responded.

No sir, this is where you're wrong.  So let's say you have no immune system left.  Your body doesn't feel bad because you don't feel everything going terribly wrong.  Fever is an immune response not anything a virus or bacteria actually causes.  When you have nothing left to produce the ill effects of well, being ill you won't feel the incessant bastards storming in.  I can attest that the first few months on meds were harsh mostly because my body was kicking the junk out of all the crap that had been going on while it was too diminished to do a proper job.  Take the meds already Christine.

Offline Etay1207

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Re: Why I'm not on meds
« Reply #73 on: March 25, 2010, 07:19:00 PM »
Red dragon, I often joke about having AIDS related dementia. But no, my mind is just as sharp now as when I was studying Calculus and Physics in college.
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!

Offline john33

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Re: Why I'm not on meds
« Reply #74 on: March 25, 2010, 07:19:53 PM »
etay,
unless cleared from your system, pathogens can go to sleep and come at you again at a later date.



John

Offline Etay1207

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Re: Why I'm not on meds
« Reply #75 on: March 25, 2010, 07:22:27 PM »
Hellraiser, I know that. I would be DEAD if I had no immune system.
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!

Offline Hellraiser

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Re: Why I'm not on meds
« Reply #76 on: March 25, 2010, 07:24:31 PM »
Hellraiser, I know that. I would be DEAD if I had no immune system.

You're getting there, to both options that is.

Offline Matty the Damned

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Re: Why I'm not on meds
« Reply #77 on: March 25, 2010, 07:26:02 PM »
Hellraiser, I know that. I would be DEAD if I had no immune system.

Yeah you have an immune system. Folks are referring to your cell mediated immune system. Yours is pretty well fucked at the moment.

MtD

Offline Etay1207

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Re: Why I'm not on meds
« Reply #78 on: March 25, 2010, 07:27:10 PM »
John, what keeps the pathogens "in check"? When you are infested with some pathogen,  it continues to multiply  if not stopped by your body. People with no immune systems must live in bubbles for they can't afford to come in contact with ANYTHING.
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!

Offline john33

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Re: Why I'm not on meds
« Reply #79 on: March 25, 2010, 07:31:03 PM »
Etay,
please re-read what people are writing, your immune system can't muster the reactions of fever and symptoms.
And as for the no immune syste, your nearly there

John

Offline Assurbanipal

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Re: Why I'm not on meds
« Reply #80 on: March 25, 2010, 07:32:59 PM »
Ann, I hear what you are saying and know that is the basis for IRS. This is why that doesn't make sense to me. When you are young you get chicken pox. The symptoms go away but the virus stays in your body and only "flares up" as shingles when your immune system is compromised for some reason. PCP is caused by a fungus that is found in most people. It gives you PCP only when your immune system is not working properly.
     Pathogens come to TAKE OVER. I would be dead if my immune system had not responded.

Etay

I think you are back to that all black or white / no grey thinking again.  Once you start to go downhill it is not necessarily a straight slide.  In fact, that is probably the exception.  

Me, I got over pneumonia twice before it almost killed me the third time and I got a diagnosis and started HAART.  But the dice rolls got worse and worse on getting sick....
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 Etay1207

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Re: Why I'm not on meds
« Reply #81 on: March 25, 2010, 07:40:15 PM »
John, not so true. I got the stomach flu that was going around a few weeks ago. I had the shits and fever. It lasted a couple days and I was back at work.
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!

Offline Hellraiser

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Re: Why I'm not on meds
« Reply #82 on: March 25, 2010, 07:43:34 PM »
Actually I'm kinda glad you're making these posts.  Since you have a devil may care attitude about your own health, I'm just not going to care anymore about how sick you get.  I'm done with you permanently.  Congratulations Etay you're the first person on these forums I'm going to put on ignore, because I just can't take the constant prattle of your ignorance anymore.

Offline ATorrez

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Re: Why I'm not on meds
« Reply #83 on: March 25, 2010, 07:46:33 PM »
Correction, even if one had a ZERO CD4 cell count that would not mean they did not have an immune system. CD4 cells help to form a coordinated immune response. The body would still produce interferons, histamines, interleukins, TNF, antibodies, monocytes, eosinophiles, basophiles, etc.
Piss off a democrat: Take responsibility for your life and your actions.

"When Marxist dictators shoot their way into power in Central America, the San Francisco Democrats don't blame the guerrillas and their Soviet allies. They blame United States policies of 100 years ago. But then they always blame America first." -Jeanne Kirkpatrick

Offline WillyWump

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Re: Why I'm not on meds
« Reply #84 on: March 25, 2010, 07:57:45 PM »
John, not so true. I got the stomach flu that was going around a few weeks ago. I had the shits and fever. It lasted a couple days and I was back at work.

Etay,

Ive never had a parasitic infection, nor stomach flu with fever and shits since Ive been on meds.

I wonder why you are so sick???

-Will

Edited to add- Ive never had a parasitic infection, and ahvent had stomach flu in 10 years.
« Last Edit: March 25, 2010, 08:01:21 PM by WillyWump »
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 Etay1207

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Re: Why I'm not on meds
« Reply #85 on: March 25, 2010, 08:18:01 PM »
WillyWump, I got sick because I had a stomach flu. The same stomach flu that many HIV- people got. A few people on here even talked about it. Read the previous posts. Maybe you didn't get sick because YOU have no immune response ;)
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!

Offline WillyWump

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  • your ramblings bore Yamaguchi Kitteh
Re: Why I'm not on meds
« Reply #86 on: March 25, 2010, 08:23:04 PM »
WillyWump, I got sick because I had a stomach flu. The same stomach flu that many HIV- people got. A few people on here even talked about it. Read the previous posts. Maybe you didn't get sick because YOU have no immune response ;)

Just sayin, you seem pretty sickly
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 WillyWump

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Re: Why I'm not on meds
« Reply #87 on: March 25, 2010, 08:28:56 PM »

Stomach Flu Causes and risk factors:

"Compromised immune systems - Adults with immune systems compromised by HIV, AIDS or other medical conditions are especially at risk."

http://ehealthforum.com/health/stomach_flu_causes_and__risk_factors-e543.html

So it begins for you.
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 Jeff G

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Re: Why I'm not on meds
« Reply #88 on: March 25, 2010, 08:34:38 PM »
Hi Etay , I am interested to know what are your thoughts about why you have done so well with HIV and others have died ?   

Offline Jody

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Re: Why I'm not on meds
« Reply #89 on: March 25, 2010, 08:51:20 PM »
Hi Etay...I don't really blame anyone who has any trepidation about starting antiretrovirals, it is certainly not an easy choice one must make.

For me there was no choice as I saw it.  I had been sick with pneumonia and bouts with thrush and molusscum contagiousm of the skin.  I started on AZT, 3TC and later added Crixivan to form the cocktail and complete and really benefit my regime at the time.  I started to get much better and regained 40 pounds - I'm 6'3" and was down to about 145 pounds.  I was then able to go to the gym and live normally again.  I know the meds had a Lazarus like effect on me, I literally was close to death. 

So you might say that I am proving your point, that starting meds after taking ill is an option, but why take that risk as you don't want to get sick at all and find yourself in deep shit all of a sudden, who knows.  Certainly there is alot more available info out there these days to educate everyone who can be reached.

Again to be honest I do relate in some ways but would advise against putting all your faith in hoping you will always live with HIV and the absence of serious illness.  Take care and good luck in your decisions.


Jody
"Wake up to find out that you are the eyes of the world".
 "Try to discover that you are the song that the morning brings."

Grateful Dead

Offline ATorrez

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Re: Why I'm not on meds
« Reply #90 on: March 25, 2010, 08:55:38 PM »
Having been a denialist in my former life I can tell you what he thinks or believes.

They think that everything other than HIV causes AIDS and death amongst HIV+ persons. Drug use, alcohol abuse, stress, poor diet, medications, antibiotics, poppers, etc.

While many of these things have been shown to depress the human immune system to an extent, none have depressed it to the level that HIV does.

But for a denialist it's basically anything you can think of except HIV. They also believe in these magic potions, similar to the ones that I see people here using sometimes, such as "astralagus". They follow these crazy diets prescribed by Doctor Mercola. None of their treatments from HIV have any well performed scientific studies to back them up, just rumours and folklore.
Piss off a democrat: Take responsibility for your life and your actions.

"When Marxist dictators shoot their way into power in Central America, the San Francisco Democrats don't blame the guerrillas and their Soviet allies. They blame United States policies of 100 years ago. But then they always blame America first." -Jeanne Kirkpatrick

Offline Jeffreyj

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Re: Why I'm not on meds
« Reply #91 on: March 25, 2010, 09:54:18 PM »
I bet I live longer then those who don't take meds. I've been consuming all kinds of life saving drugs.
I'm good for the Economy, and I'm good to myself.
I'm faffing at those who told me i wouldn't make it for ten years. They said my liver would be the size of a pea.

Those that told me that are gone.
25th anniversary is next month. My liver is the size of, um, a normal liver. to each their own.
Positive since 1985

Offline red_Dragon888

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Re: Why I'm not on meds
« Reply #92 on: March 26, 2010, 01:21:36 PM »
Red dragon, I often joke about having AIDS related dementia. But no, my mind is just as sharp now as when I was studying Calculus and Physics in college.
That is what the virus wants you to think...   ;)
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 mecch

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  • red pill? or blue pill?
Re: Why I'm not on meds
« Reply #93 on: March 27, 2010, 01:58:29 PM »
WillyWump, I got sick because I had a stomach flu. The same stomach flu that many HIV- people got. A few people on here even talked about it. Read the previous posts. Maybe you didn't get sick because YOU have no immune response ;)

I think I may have discovered one of your logical flaws that make you believe you are choosing correctly avoiding HAART.

Being on HAART does NOT destroy your immune response, my dear.  In fact the opposite. I had inadequate immune response to HIV, as you are now having, and as you have been having for many years, for your CD4s to go so low.  Mine was evident within a month.

After I went on HAART, the specialist said that not all my improved numbers were the result of HAART. In fact he said my immune reponse seemed to kick in finally to help.

HIV destroys.  HAART does not destroy.  It stops replication and your body can find a new equilibrium.  Bodies are very strong, witness yours. But your body is losing. HIV will win. HIV will kill you. HAART will save you.  Not taking HAART is not keeping you alive. It is hurting you badly at this point.
ďFrom each, according to his ability; to each, according to his needĒ 1875 K Marx

 


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