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Author Topic: Low t-cell and healthy?  (Read 17770 times)

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Offline Etay1207

  • Member
  • Posts: 131
Low t-cell and healthy?
« on: January 15, 2010, 08:51:41 AM »
Hello all, these forums are INVALUABLE for me.  I don't know what I would do without you guys.  I have a question though.  As you can see from my signature, my t-cells are low and my viral load is high.  I know that will change if I started taking meds.  Are there others on this forum that have low CD4's and no meds who are living healthy lives?  I have no OI's and I am the picture of health. 
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 veritas

  • Member
  • Posts: 1,408
Re: Low t-cell and healthy?
« Reply #1 on: January 15, 2010, 10:28:08 AM »

Etay,

I'm happy for you that you are the picture of health right now, but I believe your playing with fire. With only 71 t-cells and a viral load of almost 500,000 coupled with a cd4% of 10, your at risk for many complications. I believe you should re-think your Doctor's suggestion to start HAART. Once the complications start, your recovery will be a lot more difficult.

I'm wishing you the best, but please don't gamble with this  disease.

Let us know your decision. By the way, I have been on medications since 1991 and today (thank god) my stats are: cd4 - 1300, vl -ud, cd4% 43.

Good luck

v

Offline Moffie65

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  • Posts: 1,755
  • Living POZ since 1983
Re: Low t-cell and healthy?
« Reply #2 on: January 15, 2010, 10:40:39 AM »
Believe the science.  IF LEFT UNTREATED, HIV/AIDS CAN/WILL BE TERMINAL.

If you don't want to live a long life and don't take the meds, for sure you will become very sick.  The HIV has already damaged your immune system and a good bout of the flu, cold, PCP, or any other thing that might come along, may surely kill you.  How you "feel" now is of little consequence, but what is going on in your body will certainly catch up in time.

The choice is yours.
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.
Lynn Lavne

Offline skeebo1969

  • Member
  • Posts: 5,667
Re: Low t-cell and healthy?
« Reply #3 on: January 15, 2010, 10:51:40 AM »


  If I was you I would get on meds ASAP.  You are doing your body great harm by holding out.
I despise the song Love is in the Air, you should too.

Offline J.R.E.

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  • Posts: 6,965
  • Joined Dec-2003 Living positive, since 1985.
Re: Low t-cell and healthy?
« Reply #4 on: January 15, 2010, 11:04:51 AM »
Etay,

I responded to you in this thread, Back around the 17th of December. 

http://forums.poz.com/index.php?topic=5067.msg372376#msg372376

Your t-cells will continualllly drop your viral load will go up, and you are bound to get seriously ill, if you don't get started on meds soon.  I know, I've been there !!


Ray
Current Meds ; Viramune, Epzicom, 40mg of simvastatin, 12.5mg of Hydrochlorothiazide.
Metoprolol tartrate 25mg



http://forums.poz.com/index.php?topic=40802.0

http://forums.poz.com/index.php?topic=45159.0

http://forums.poz.com/index.php?topic=39722.msg495621;topicseen#msg495621

http://forums.poz.com/index.php?topic=46806.0

http://forums.poz.com/index.php?topic=39414.msg491701#msg491701


 In October of 2003, My t-cell count was 16, Viral load was over 500,000, Percentage at that time was 5%. I started my first  HAART regimen  on October 24th,03.

 As of April 14, 2014,  t-cells are at 485 Viral load unknown @ this time

 Current % is at 14% (L)

  
 62 years young.

Offline WillyWump

  • Member
  • Posts: 7,022
Re: Low t-cell and healthy?
« Reply #5 on: January 15, 2010, 11:05:23 AM »
Hi Etay,

Good to hear you are feeling good even with the horrible numbers. However I am still concerned for you. Please dont equate feeling good/looking good with everything being A-OK. Chances are your immune system is shot and you are a walking magnet for OI's.

Please, please seriously consider starting meds before it is too late. Your situation reminds me of my dear friend Scott. He never took meds because he felt "Great" and always told me he would start the meds when he started to feel ill. He never got the chance to start meds....he suddenly became ill and went to the doctor, they ran a battery of tests and it came back that he had advanced cancer, among other things, pretty much everywhere in his body including his brain. The doctors gave him 2 months. He wanted to start meds but of course it was too late. They sent him home. My beautiful Scott was dead  4 weeks after he started "feeling bad".   He went blind lying in his bed 2 weeks before he died. He went into a coma 1 week before he died. It was heart breaking. He was 34. Just a month prior to his death he was happy. It happened that fast. The doctors said the cancer was related to his HIv status.

Please, please consider meds now, before its too late.


-Will
POZ since '08

Last Labs-
6/25/13 CD4- 1036, UD,
2/4/13, CD4 - 489, UD, 28%
8/9/12, CD4 not taken, UD.
2/13/12, CD4- 904, UD 42%

Current Meds: Prezista/Epzicom/ Norvir
.

Offline leatherman

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  • Posts: 5,923
  • Google and HIV meds are Your Friends
Re: Low t-cell and healthy?
« Reply #6 on: January 15, 2010, 11:11:33 AM »
in the mid 90s, I was feeling pretty damned healthy too with about 100 tcells and a viral load of 600,000 though I had just buried my first partner who had died from AIDS. A few months later I thought I had the flu that everyone else was having too during a February; but it just wouldn't get better. Finally I went to the hospital on my birthday in March where they admitted me. I was down to 5 cells, had a vl around 800,000, and was actually dying not of the flu but PCP. Thankfully after 5 miserable, harrowing days in the hospital, while the doctors pumped me full of meds and my family rushed to what we all thought would be my "death bed", I barely survived; but as my health and immune system were permanently damaged, I've never been the same man since.

Almost two years ago now, my second partner was admitted to the hospital with a flu that he couldn't shake. Sadly, we found out he had undiagnosed, untreated HIV. With a tcell count of 7 and a vl load of 650,000, he also had 3 non-Hodgkins lymphoma tumors and pneumonia. Sixty days of hell in the hospital later, I took him home as it had been too late for the HIV meds or cancer chemotherapy to work. Nine days later he died. All of the people around him were devastated as he had been the picture of health in January but was dead from the AIDS, that we never even knew he had, just about 80 days from the first symptom that anything was wrong.

Ever since then, I realized that with counts like that (like yours), death can easily come within about two months. You have no idea what pathogens are building in your body right now, as the HIV has destroyed your immune system. Tomorrow someone's sneeze or cough nearby could be the germ that proves fatal to you. For a few months, you've been "bragging" about your numbers around here. Unfortunately, over and over from the people who have been in your position with those kinds are numbers, you're not going to get any "approval" but you are going to get the same reaction - that you are playing with fire and are very close to being burned - if it's not too late already. Of course, I really do wish you the best and would hope that you would start treatment ASAP; but I won't be surprised to hear it when the worst befalls you if you continue to not treat your HIV.
leatherman (aka mIkIE)


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

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

"Empty Chairs at Empty Tables" from Les Miserables

Offline mecch

  • Member
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  • red pill? or blue pill?
Re: Low t-cell and healthy?
« Reply #7 on: January 15, 2010, 11:15:27 AM »
I am curious - since you have your labs - you are seeing a doctor.  What does your doctor say about your choices? She / he is an EXPERT, more than most of us here - who are experts in another way - living with hiv.  

You know, this is a public forum.   Honestly I can't imagine any doctor advising you to have waited so long for HAART.   If you get one or two people here who support you, it's sending, in my opinion, a pretty poor message to whoever falls on these pages.  
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline Rev. Moon

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  • Posts: 3,782
  • Smart ass faggot ©
Re: Low t-cell and healthy?
« Reply #8 on: January 15, 2010, 11:17:21 AM »
That viral load is too high (causing great damage to your system) and you are now under 100 CD4.  If you want to continue feeling well then it is seriously advised that you start treatment. If you are afraid of side effects or the fact that meds are a a lifetime commitment you need to discuss it openly with your doctor. Don't waste too much time just because of fear.  It will be very unusual (and irresponsible) for any of us to advise you otherwise.
"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 sdguyloveslife

  • Member
  • Posts: 134
Re: Low t-cell and healthy?
« Reply #9 on: January 15, 2010, 12:19:12 PM »
As Mecch pointed out above - since you have your labs, you must be getting some sort of medical care.  So, that begs the question...is your doctor trained in any way at all when it comes to HIV?  Is s/he even an HIV specialist?  A couple weeks after my HIV+ diagnosis, they told me that I had an AIDS diagnosis - even though I felt pretty good, I wasn't sick at all, I went on meds immediately after that - without questioning it.  You, my friend, have an AIDS diagnosis - is that a wake up call at all to you?   

I'm quite shocked to see that being poz for 10 years would even lead you to the question you're posing to us???  Since you have the data...ask yourself WHY have you even bothered to track your numbers for the past 10 years?  Most everyone else on here tracks numbers as an indicator or when to go on meds, or to make sure meds are doing what they're supposed to do.   

For someone who has shown to have access to medical care for the past 10 years, there is no reason to be walking around with such a compromised immune system.  Ask around to those who have had opportunistic infections...they're not fun!  Did you know that you can "feel pretty good" and have a cancer metastasizing inside of you?  I'm afraid to say that without medical intervention my friend, you're well on you're way to a serious illness or a premature death. 

I wish you well. 
Do not condemn the judgment of another because it differs from your own. You may both be wrong.

Offline rioz

  • Member
  • Posts: 54
Re: Low t-cell and healthy?
« Reply #10 on: January 15, 2010, 12:30:54 PM »
Dear Etay,

I tested positive in 1985 and had regular medical care and monitoring with an ID doc. For a variety of reasons, I stopped that care and monitoring in 2000 with a CD4 count of 788 and viral load of 7590. During the following 7 + years I felt invincible, my wife and I were raising two children, I ran a successful general contracting company, I was renovating a huge weekend home and NEVER got as much as a sniffle. I smoked, drank and ate whatever / whenever. In mid 2007 I began to experience skin problems, itching and inflammation from  the waist up. I was in what my therapist called "a stunning case of denial". By December I was hospitalized and diagnosed with PCP, Thrush and  AIDS Wasting Syndrome. I had a CD4 count of 54 (don't remember the viral load) and nearly died. Because of my actions (better to say inaction) the HIV destroyed my thyroid and testicles (and who knows what else).

Why would you not take advantage of the knowledge, science and experience before you? So many good and deserving people and their lovers, spouses, families, friends, employers etc. have suffered immeasurable pain and indignity because we did not have the knowledge, science nor experience with this hideous disease. Please ask yourself why you choose inevitable pain, suffering AND DEATH over LIFE.

In  retrospect, I wish someone would have shaken me out of my "sleep".

With love and respect,

Richard
Living with HIV since 1985
Living with AIDS since 2007

Truvada, Lexiva, Norvir, Levothyroxine, Testim, Sertraline, Crestor

Offline Miss Philicia

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  • celebrity poster, faker & poser
Re: Low t-cell and healthy?
« Reply #11 on: January 15, 2010, 12:37:12 PM »
This is akin to running across a 10 lane interstate fifty times and not getting run over and then trying to convince the world that what you're doing is safe.  It's really nothing more than a case of AIDS denialism, though in this case more "denialism-lite" I suppose as you're not coming out and just stating that HIV is harmless, but almost.
"I’ve slept with enough men to know that I’m not gay"

Offline sdguyloveslife

  • Member
  • Posts: 134
Re: Low t-cell and healthy?
« Reply #12 on: January 15, 2010, 12:44:33 PM »
Right on Miss P!! - I've been thinking that, or even wondering if the OP is just putting these posts up for shock value.  You're the one to "lay it on the line" so to speak. 

Thanks! 
Do not condemn the judgment of another because it differs from your own. You may both be wrong.

Offline Etay1207

  • Member
  • Posts: 131
Re: Low t-cell and healthy?
« Reply #13 on: January 15, 2010, 01:04:19 PM »
Thank you guys for your replies. I appreciate the concern and advice. I've been monitoring my labs as you can see for quite awhile now. I know what the medical community says about low tcells.  I've been reading, studying, and seeing my doctor for 11 years now. Though I appreciate your concern, I did not make this post for advice. Thank you again.
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 Assurbanipal

  • Member
  • Posts: 2,173
  • Taking a forums break, still see PM's
Re: Low t-cell and healthy?
« Reply #14 on: January 15, 2010, 01:17:08 PM »
Etay

Are you perhaps reading too much into your experience to date?  Up until quite recently you had very healthy tcell counts.  And while they were healthy you didn't have any health problems.  That's pretty consistent with the science that says the short term risks of death or serious illness are quite small for higher tcell counts (although the virus is eating away at you then -- it is likely to show up later).

But you have had next to no experience with living with low tcell counts.  You only went under 100 a few months ago and life gets even riskier under 50.  Your experience of the past decade is perfectly consistent with what all the rest of and science suggest for people with a normal tcell count.

But you no longer have a normal tcell count.

Instead you have reached the territory where studies show about a 30% chance of death or crippling disease each year.  

...

You posted asking for people who are currently living healthy with a long term history of low tcell counts and no medications.

You haven't found any.  

The only ones you are likely to find are those, like you, who have recently dropped part way into the danger zone and have been lucky so far.  

But you can't roll 70% on the dice each year.  
« Last Edit: January 15, 2010, 03:10:06 PM by Assurbanipal »
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 Ann

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  • It just is, OK?
    • Num is sum qui mentiar tibi?
Re: Low t-cell and healthy?
« Reply #15 on: January 15, 2010, 01:24:03 PM »
Hello all, these forums are INVALUABLE for me.  I don't know what I would do without you guys.  I have a question though.  As you can see from my signature, my t-cells are low and my viral load is high.  I know that will change if I started taking meds.  Are there others on this forum that have low CD4's and no meds who are living healthy lives?  I have no OI's and I am the picture of health. 

Thank you guys for your replies. I appreciate the concern and advice. I've been monitoring my labs as you can see for quite awhile now. I know what the medical community says about low tcells.  I've been reading, studying, and seeing my doctor for 11 years now. Though I appreciate your concern, I did not make this post for advice. Thank you again.

It was pretty clear in your first post that you were asking for advice. You got advice, but obviously not what you wanted to hear.

It's sad that you seem to be hell-bent on self destruction, but if you want to continue in your denial, that's your right. Hope you don't linger on your deathbed for too long - it won't be much fun and you certainly won't be the "picture of health" for much longer. Sad.
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 veritas

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  • Posts: 1,408
Re: Low t-cell and healthy?
« Reply #16 on: January 15, 2010, 01:32:31 PM »

Etay,

I will respect your statement for no more advice, however, I would like to ask you a question: Are you taking any type of extra-ordinary measures or homeopathic remedies?

You seemed to have controlled your virus pretty well until the last couple of labs, but your numbers are in the danger zone now.

For myself, medication was the only way I could build my numbers to their present level ,along with healthy living and a good diet.

v

Offline Etay1207

  • Member
  • Posts: 131
Re: Low t-cell and healthy?
« Reply #17 on: January 15, 2010, 02:07:10 PM »
Veritas, my numbers were excellent until I got a flu shot.  ::) my doctor tells me all the time of the horrible things that will happen to me. I take a good multivitamin and garlic but I'm not crazy about taking a bunch of suppliments. I just live a good, clean life.
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 veritas

  • Member
  • Posts: 1,408
Re: Low t-cell and healthy?
« Reply #18 on: January 15, 2010, 03:00:03 PM »

Etay,

Fair enough. I wish there was something I could say to change your mind, however, I wish you well.

Please keep us posted on your progress.

v

Offline rioz

  • Member
  • Posts: 54
Re: Low t-cell and healthy?
« Reply #19 on: January 15, 2010, 03:05:07 PM »
Etay,

I too, like sdguy, was wondering if you are for real. While I can understand being in denial (as I was for so many years), I cannot understand being in denial AND knowing your CD4 and viral load results have you literally at death's door.

I had 22 years  of my body telling me that I was the picture of health. In the early years of my diagnosis there was much talk by my doctor and others of long term non progression and that I very well could be one. Of course, I latched onto that theory for dear life.! That coupled with living in a very heterosexual environment where HIV AIDS was rarely spoken about or the ravages of the disease seen, I ended up as I did.

Something about this story is not right under any circumstance.

My fear is that someone may be inspired by your "story" and act in a similar irresponsible fashion. My hope is you are alone in the world and have no relations or dependants that will ultimately suffer from your arrogance and stupidity.

Richard
« Last Edit: January 15, 2010, 03:25:22 PM by rioz »
Living with HIV since 1985
Living with AIDS since 2007

Truvada, Lexiva, Norvir, Levothyroxine, Testim, Sertraline, Crestor

Offline Etay1207

  • Member
  • Posts: 131
Re: Low t-cell and healthy?
« Reply #20 on: January 15, 2010, 04:14:43 PM »
Assurbanipal: I have found many, just not on this site.
Ann: reread the post. I wasn't asking for advice. 
Rioz: I'm not saying that HIV is not an issue. But you did state that you smoked, drank, and ate whatever. Nobody can keep that type of    lifestyle and remain healthy.
Sdguyloveslife: yes, my doc is an HIV specialist.
Veritas: of course I'll keep u updated.

Now my question for everyone who has replied thus far. Why is there such hostility?  I highly doubt you would feel so strongly if I were smoking, not getting proper rest, or eating unhealthy. All of which will send you to an early grave. Why are we allowing my choice to not take HIV medication to cause a disturance between our correspondence with each other?

Sorry for such short answers. I am still at work and don't have time for thought out answers.

 
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 skeebo1969

  • Member
  • Posts: 5,667
Re: Low t-cell and healthy?
« Reply #21 on: January 15, 2010, 04:23:12 PM »



   Since your at work get off the computer and go do your job.  I am not buying any of this Mr. Jersey.
I despise the song Love is in the Air, you should too.

Offline Inchlingblue

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Re: Low t-cell and healthy?
« Reply #22 on: January 15, 2010, 04:29:30 PM »
Now my question for everyone who has replied thus far. Why is there such hostility?  I highly doubt you would feel so strongly if I were smoking, not getting proper rest, or eating unhealthy. All of which will send you to an early grave. Why are we allowing my choice to not take HIV medication to cause a disturance between our correspondence with each other?


I think what you're reading as hostility is actually frustration and concern on the part of those who took the time to respond. I debated whether or not to enter the fray of this thread because it really is so hard to believe that it almost seems as if you might be pulling our collective leg.

Etay, if you are indeed for real, you should realize that those numbers you have posted do in fact tell a story: consistently declining CD4s and consistently rising viral loads, the classic recipe that leads to a death from AIDS if left untreated. These are not "opinions," but cold hard facts.

While your viral load was still relatively low and your CD4s were in the triple digits, you could get away (barely) with no meds. At this point, with a very high viral load and double-digit CD4s, there is nowhere to go but down unless you start meds.

It's not rocket science or brain surgery, it's actually very straightforward and simple.

I hope you don't die soon but I do hope this thread does.
  
« Last Edit: January 15, 2010, 04:34:59 PM by Inchlingblue »

Offline J.R.E.

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  • Posts: 6,965
  • Joined Dec-2003 Living positive, since 1985.
Re: Low t-cell and healthy?
« Reply #23 on: January 15, 2010, 04:35:28 PM »
... because it really is so hard to believe that it almost seems as if you might be pulling our collective leg.



Exactly !!  This will be my last response.  Etay, I suggest you read the lessons, starting here :

http://www.aidsmeds.com/articles/WhenToStart_4754.shtml

Ray
Current Meds ; Viramune, Epzicom, 40mg of simvastatin, 12.5mg of Hydrochlorothiazide.
Metoprolol tartrate 25mg



http://forums.poz.com/index.php?topic=40802.0

http://forums.poz.com/index.php?topic=45159.0

http://forums.poz.com/index.php?topic=39722.msg495621;topicseen#msg495621

http://forums.poz.com/index.php?topic=46806.0

http://forums.poz.com/index.php?topic=39414.msg491701#msg491701


 In October of 2003, My t-cell count was 16, Viral load was over 500,000, Percentage at that time was 5%. I started my first  HAART regimen  on October 24th,03.

 As of April 14, 2014,  t-cells are at 485 Viral load unknown @ this time

 Current % is at 14% (L)

  
 62 years young.

Offline leatherman

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Re: Low t-cell and healthy?
« Reply #24 on: January 15, 2010, 04:59:51 PM »
Why is there such hostility?
Hostility?
I tell you about my, not one but TWO, partners who died with numbers like yours from untreated HIV, and I back it up with my own story of being hospitalized and nearly dying myself with numbers like that because my HIV was untreated, and did you see that as hostility? Not only are you wrong about your course of in-action (ie not taking meds) but you've grossly mistaken scientific fact, compassion and concern for hostility.

I highly doubt you would feel so strongly if I were smoking, not getting proper rest, or eating unhealthy.
your strawman arguments are no good. None of those things is a terminal disease. True they can eventually shave a few yrs off your life. However, HIV when it reaches the AIDS stage is a terminal disease resulting in death usually within 18 months or so. I saw hundreds die like that in the late 80s and early 90s. You're not any more "special" than them, so you should be expecting what happened to those that died early in this epidemic without meds to happen to you too.

Dude, I think we're all just telling you that you're a fool and will probably end up dead soon unless you change your ways. (the clock is already ticking away on those 18 months) But go ahead and ignore science and ignore the multiple accounts of anecdotal evidence we've presented to you. I know you're already ignoring your doctor's advice.

One last thing to ponder as I leave you to your own devices, think about all the things people here have said, the things you're read online, and the things your doctor has surely told you. Can you honestly say that all of us are wrong, while you, alone, are the only one right about your course of action? Does that sound logical to you? Are you so sure you are that right? I promise when you find out how wrong you are and you're lying in the hospital I won't say I told you so, but I'll be thinking it.  ;)
leatherman (aka mIkIE)


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

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

"Empty Chairs at Empty Tables" from Les Miserables

Offline xman

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Re: Low t-cell and healthy?
« Reply #25 on: January 15, 2010, 05:05:55 PM »
Etay1207,

I don't know what keeps you from not taking the meds that would permit you to live long and like anybody else. With all the poisons we eat, drink and smoke, this HAART drugs will not make any difference but on the contrary they would keep you alive and make you feel even better. This if you're concerned about toxicities and side effects.
Consider that there's very much interest now in finding a cure and perhaps over the next decade something will pan out. Wouldn't it be very sad if you should die earlier without the chance to be there celebrating this revolutionary event?

I was reading a question on thebody.com website from a reader who is also very tired of the current meds and Dr. K. Henry, a researcher who is mostly very caution about future developments in therapy gave an answer which leaves hopes for next years. It seems that there's really a change coming soon. Be there to see and feel it!

Read it here:
http://www.thebody.com/Forums/AIDS/SideEffects/Current/Q205777.html
« Last Edit: January 15, 2010, 05:13:57 PM by xman »
sign the petition launched by the aids policy project addressed to the nih aimed to increase the money needed to find the cure:

http://www.aidspolicyproject.org/petition_for_the_nih

we can make a difference and we need to fight. please support them! it doesn't cost you anything. they need it now more than ever!

Offline rioz

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Re: Low t-cell and healthy?
« Reply #26 on: January 15, 2010, 05:08:44 PM »
Etay,

I surrender!

Not just yet.

I WAS one of the (you say many, I say few) LTNP's for 22 years UNTIL two years ago.

You DID ask a question and you did get answers. If you care to argue the formal, lexical or conceptual       semantics of advise vs. question, check with your local English professor.

HIV IS THE issue.  Again, not the argument of how much one drinks or how healthy one eats.

You have an AIDS diagnosis and therfore  YOU HAVE AIDS!

AIDS IS THE ISSUE!  

RESPONSIBILITY IS THE ISSUE!

I don't see any hostility here, I see anger and frustration with your arrogance and ignorance.
Have you watched someone you love die of AIDS? I have had many friends and lovers  die of AIDS. The sum total of death and suffering witnessed and experienced by the good people on this forum is one of the greatest human tragedies on this Earth.

Now I surrender because quite frankly, I think your  story is bogus.

Richard


Living with HIV since 1985
Living with AIDS since 2007

Truvada, Lexiva, Norvir, Levothyroxine, Testim, Sertraline, Crestor

Offline Theyer

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Re: Low t-cell and healthy?
« Reply #27 on: January 15, 2010, 05:09:44 PM »
etay
People are getting upset because they have witnessed many lingering deaths.
There is also a passive/aggressive element in  your stance and in your ? about why are people getting upset.
theyer
"If we can find the money to kill people, we can find the money to help people ."  Tony Benn

Offline Rev. Moon

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Re: Low t-cell and healthy?
« Reply #28 on: January 15, 2010, 05:21:06 PM »
Assurbanipal: I have found many, just not on this site.

Because here you will find INFORMATION and SUPPORT (when granted), not denialism (which is what you seriously verge on) or advice that could cause other newly diagnosed people to make ill-informed decisions.

Ann: reread the post. I wasn't asking for advice.  

Then what did you want?  Someone to say "yay, I agree with you on the fact that you can stay in AIDS-land, with barely any CD4 and still claim to be the "picture of health" (of what sort of health?)".   Again, wrong place, mate.

Now my question for everyone who has replied thus far. Why is there such hostility?  I highly doubt you would feel so strongly if I were smoking, not getting proper rest, or eating unhealthy. All of which will send you to an early grave. Why are we allowing my choice to not take HIV medication to cause a disturance between our correspondence with each other?

Was there hostility in my response?  In Mikie's? In Miss P.'s? In Veritas'?  How dare you?  You are the one who flippantly says that you do not want "advice."  

I'm done with this thread.  Take your rubbish someplace else.
« Last Edit: January 16, 2010, 05:05:29 PM by livebythemoon »
"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 Hellraiser

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Re: Low t-cell and healthy?
« Reply #29 on: January 15, 2010, 06:11:34 PM »
Now my question for everyone who has replied thus far. Why is there such hostility?  I highly doubt you would feel so strongly if I were smoking, not getting proper rest, or eating unhealthy. All of which will send you to an early grave.

You are equating untreated HIV/AIDS with a lack of sleep and unhealthy eating habits.  In the very short term the former is much much more dangerous than the latter.  At what point will you decide you need to get on meds?  When you are on the respirator in the hospital?  I would kill to have had the knowledge of my counts while they were as good as yours used to be so that I could have gotten onto meds sooner and spared myself some of the hell that I'm going through right now.

Look back through this thread and ask yourself how many of these people think you're doing the right thing.

I hope you come to your senses before you get seriously ill.

Offline sdguyloveslife

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Re: Low t-cell and healthy?
« Reply #30 on: January 15, 2010, 06:41:33 PM »

Now my question for everyone who has replied thus far. Why is there such hostility?  I highly doubt you would feel so strongly if I were smoking, not getting proper rest, or eating unhealthy. All of which will send you to an early grave. Why are we allowing my choice to not take HIV medication to cause a disturance between our correspondence with each other?

Sorry for such short answers. I am still at work and don't have time for thought out answers.


You know what Etay?  If you didn't want advice, then I retract what I said.  I should know better than to try to fix another person.  But the fact is that too many of us on this board know what a death from AIDS looks like. 

Keep us posted and be sure to post pictures of your "picture of health" self when you have raw KS lesions opening up on your face ;-) 

Do not condemn the judgment of another because it differs from your own. You may both be wrong.

Offline Matty the Damned

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Re: Low t-cell and healthy?
« Reply #31 on: January 15, 2010, 07:11:58 PM »
Etay if you don't wanna take medications then that's just fine. Don't take 'em. I've been there and done that.

You might feel healthy now, but you're not healthy. A CD4 count of 71 is not healthy by any stretch of the imagination. But it's your call. Some people walk around for ages with low CD4 counts feeling just fine.

Eventually you'll stop feeling fine.

But know this: the first OI that visits you may not be something relatively innocuous like candidiasis or even KS. It might be MAC. It could be Progressive Multifocal Leukoencephalopathy (PML) or Histoplasmosis. Look those words up.

Whatever happens, it's ultimately a matter for you. But you won't be able to say you weren't warned.

MtD

Offline Inchlingblue

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Re: Low t-cell and healthy?
« Reply #32 on: January 15, 2010, 07:35:56 PM »
 It might be MAC. It could be Progressive Multifocal Leukoencephalopathy (PML) or Histoplasmosis. Look those words up.


Yikes . . . that's some scary ass shit. It does make KS and candidiasis and even PCP sound like a walk in the park.

 
« Last Edit: January 16, 2010, 12:11:03 AM by Inchlingblue »

Offline Ann

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Re: Low t-cell and healthy?
« Reply #33 on: January 15, 2010, 07:46:12 PM »

Ann: reread the post. I wasn't asking for advice.  
 

You said "I have a question though." Where I come from, that's tantamount to asking for advice. I come from Planet Earth, where people with counts like yours and access to life-saving meds take those meds so they can remain "the picture of health". What planet do you come from?

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 max123

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Re: Low t-cell and healthy?
« Reply #34 on: January 15, 2010, 10:27:23 PM »
Are there others on this forum that have low CD4's and no meds who are living healthy lives?

hi etay,

personally, i don't recall having come across any such persons in my short 5 months here on the aids meds forums.

an aside, i see that you are aware that your numbers would be different on hiv meds. i'm curious. what are your reasons for staying meds free?

max
1/86 - 6/08 (annually): neg elisa
7/09: pos elisa/pos wb
8/09: cd4 560, cd4% 35, vl 13,050
12/09: cd4 568, cd4% 33, vl 2,690
4/10: cd4 557, cd4% 29.3, vl 6,440
7/10: cd4 562, cd4% 29.6, vl 3,780

Offline Dennis

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Re: Low t-cell and healthy?
« Reply #35 on: January 15, 2010, 10:53:27 PM »
Etay, I realize your specific question "Are there others on this forum that have low CD4's and no meds who are living healthy lives?" is looking for more "factual" information than "advise."

While I personally don't recommend going without meds, I recall there was a study conducted at the University of Miami regarding patients with low cd4 counts who remained asymptomatic. 

Offline leatherman

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Re: Low t-cell and healthy?
« Reply #36 on: January 15, 2010, 11:17:33 PM »
I recall there was a study conducted at the University of Miami regarding patients with low cd4 counts who remained asymptomatic. 
more information about that study is here http://www.aegis.com/pubs/aidswkly/2002/AW020104.html
Quote
Dr. Gail Ironson and colleagues at the University of Miami and the University of California at Los Angeles investigated the possibility of "an immune component that protects a relatively rare group of HIV-infected people with very low CD4 cell counts (less than or equal to 50 x 106/l) who have prolonged asymptomatic periods."

Natural killer (NK) cell activity may help make up for CD4 cell deficiencies in asymptomatic patients, the researchers found.

Ironson et al. studied a group of 30 untreated HIV patients who remained asymptomatic for nine months despite extrememly low CD4 cell counts. They compared their immune activity to that of treated patients with CD4 cell counts between 150 and 400 x 106 cells/L and healthy controls, according to the report.

and more on the same study here, though you'd have to pay to actually read the full report
Quote
Abstract
A 5-year research project has compared psychologically and immunologically long survivors with AIDS as well as HIV+ persons who have remained healthy in the face of very low CD4+ cell counts with a group of HIV+ persons without symptomatic AIDS and CD4 counts between 150 and 500 mm3. Long survival is characterized by a collaborative relationship with physician, and religious/spiritual coping. Optimism characterizes healthy HIV+ persons with low CD4 counts, whose health may be protected by the unusual preservation of normal levels of natural killer cell cytotoxicity (NKCC). Refusal to perceive disease as imminently fatal and coping well with loss correlate positively with NKCC and negatively with viral load; toleration of loss correlates positively with CD4 count. Both specially designed self-administered tests and rated semistructured interviews are useful in discerning psychosocial factors related to health and long survival and their biological correlates.
leatherman (aka mIkIE)


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

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

"Empty Chairs at Empty Tables" from Les Miserables

Offline Etay1207

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Re: Low t-cell and healthy?
« Reply #37 on: January 15, 2010, 11:51:49 PM »
Thanks, Dennis!  I appreciate it.
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 PeteNYNJ

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Re: Low t-cell and healthy?
« Reply #38 on: January 16, 2010, 12:15:25 AM »
I smell a denialist troll

I hope you are living in a bubble because walking around NJ is this frigid weather with 71 Tcells, 10% ratio and over 500K copies of a virus, you might just drop dead.  I hope you don't take the train, bus, or ferry into NYC for work.  You are just asking for trouble.

I am glad you are feeling fine which is kind of a silly way to predict how your immune system is performing.

Also, did I miss why you don't think you need to take meds?  I mean, if you have 1 tcell, will you decide to take them then?  Do you think they don't work? 

Offline Matty the Damned

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Re: Low t-cell and healthy?
« Reply #39 on: January 16, 2010, 12:34:37 AM »
more information about that study is here http://www.aegis.com/pubs/aidswkly/2002/AW020104.html
and more on the same study here, though you'd have to pay to actually read the full report

Hmm. A study from 2001. I'd been interested to see how many of the Asymptomatic 30 are still rocking on.

MtD
(Who knows stale research when he sees it)

Offline Dennis

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Re: Low t-cell and healthy?
« Reply #40 on: January 16, 2010, 01:12:49 AM »
Hmm. A study from 2001. I'd been interested to see how many of the Asymptomatic 30 are still rocking on.

MtD
(Who knows stale research when he sees it)

A search of current research projects at the University of Miami show this project is still being conducted within the College of Psychology. It can hardly be considered stale.

http://www.psy.miami.edu/research
http://www.psy.miami.edu/graduate/health/research/nimh_lts.phtml

However, the study appears to focus mainly on stress and the affects HIV individuals.  HIV positive people who have low CD4 counts (<100) and are clinically asymptomatic (no CDC 1993 category B or C symptoms) just happen to be 1 of the 3 groups studied.

I agree, though. It would be interesting to see if any of the original participants from that group are still alive and kicking today without meds.

Offline leatherman

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Re: Low t-cell and healthy?
« Reply #41 on: January 16, 2010, 01:23:47 AM »
I'd been interested to see how many of the Asymptomatic 30 are still rocking on.
one description of the study said it was a 5-yr research project while the other says it was only 9 months long. If perhaps this portion of the research was only 9 months long, perhaps it was on humanitarian grounds because the subjects were finally becoming ill? I'd love to know more about this study ;) (thanks for the additional info Dennis  ;) )

Who knows Etay perhaps you are one of those incredible few who can survive some unknown amount of time with low tcells and a growing viral load. you're taking an awfully big risk (perhaps death) for your chance to be a "special" one in a million case.

Also, did I miss why you don't think you need to take meds?  I mean, if you have 1 tcell, will you decide to take them then?  Do you think they don't work? 
I too wish you would spend a little more time on the forum, and explain your reasoning for not taking the meds. It just seems so odd that you would even bother going to have labs done if you weren't planning to use that knowledge on when to start taking meds. You've been talking about your counts here for several months, but never quite seem to explain why you choose to ignore common wisdom and continue without starting meds. You really should take the time to explain yourself, and maybe you wouldn't be the burnt of such hostility concern. From you limited replies, you sound much more like a AIDS denialist posting into a forum of HIV/AIDS support.
 
Or did you plan on going onto meds one day; but have been waiting because you haven't gotten "sick enough" to start? The science clearly shows that going onto meds before you become seriously ill improves your chances of survival and a healthier future. So once again it just seems odd that you would bother with the science of monitoring your counts and yet ignore all the other science of when to start the meds.
leatherman (aka mIkIE)


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

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

"Empty Chairs at Empty Tables" from Les Miserables

Offline allanq

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Re: Low t-cell and healthy?
« Reply #42 on: January 16, 2010, 01:25:01 AM »
If you're not using your lab tests to make treatment decisions, then why are you bothering to get them?  It appears that you're attempting to prove to yourself that lab tests are worthless. Good luck with that.

Eating well, exercising, getting enough rest, and not smoking are all nice, but these measures are not a cure for AIDS.
« Last Edit: January 16, 2010, 10:53:55 AM by allanq »
Top (Breakfast): Prezista, Norvir, Isentress, Zoloft (2), Glyburide (2), Aspirin
Bottom right (Dinner): Prezista, Norvir, Isentress
Bottom left (Bedtime): Sustiva, Trazodone (2), Lipitor, Septra
Center: Alprazolam (Xanax)
Not shown: various vitamins & supplements

Offline Dennis

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Re: Low t-cell and healthy?
« Reply #43 on: January 16, 2010, 01:51:38 AM »
one description of the study said it was a 5-yr research project while the other says it was only 9 months long. If

mikie, the more I look at the informaton you linked to, the more I think these are two seperate studies. Although, they're conducted by the same person.

I have access to these journals through the University without having to pay for them. I'll see If I can find further details for you.
« Last Edit: January 16, 2010, 01:55:03 AM by Dennis »

Offline tednlou2

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Re: Low t-cell and healthy?
« Reply #44 on: January 16, 2010, 02:04:23 AM »
You said you didn't ask for advice.  You asked if anyone had low CD4s and felt good.  I doubt you'll find many of those.  They are either sick in the hospital or dead.  You have been extremely lucky thus far to not get sick with anything.  I got bacterial pneumonia.  My CD4 has been around 800 the last year.  I can only assume my CD4 before getting sick was the same or higher.  HIVers are more likely to get bacterial pneumonia--I was told I almost died from it.  That was with my numbers.  I can only imagine if I had gotten it at your CD4 or got something else.  I don't think I would have had the same recovery.  You are now at risk for PCP, toxo, cancers, and the list goes on.  You know all this.

My former partner felt great too until his CD4 was just 7.  He almost died with staph infections and other infections.  I saw a family friend in 1992 just before he died.  He couldn't control his cough from PCP.  He had several cancers, too.  I've been talking to this guy who quit his meds for 5 years.  He said he felt great until he collapsed at Christmas.  He now has some kind of brain cancer/tumor.  I think you're mistaking "hostility" for strangers caring about you.  

I hope you will get on meds without delay.  If not, please let us know when things do go way down hill.  Or, designate someone you know to let us know when you can't.  I know that sounds grim, but it would allow us to be able to share your story when this comes up again.

I worry too much about my situation--way too much.  You aren't worried enough.  I hope to hear back from you that you came to your senses on this issue.  It feels like we are all jumping on you.  I feel a connection to all of you and just hate to see something bad happen to you--even though we are strangers.

Offline jabez

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Re: Low t-cell and healthy?
« Reply #45 on: January 16, 2010, 02:14:53 AM »
I think we sometimes make "downward adjustments" to our definition of FEELING GOOD. 

When my T-cells were at 68 and my viral load was at 469,000, I thought I felt all right.   I went to work every day.   I sometimes went to the gym.   I hung out with family and friends.   I did all the things I was supposed to, and I thought I felt pretty good.

Once I started treatment, got my VL suppressed and quadrupled my T-cells, I discovered that I felt a whole lot better than when I had your numbers.   I re-adjusted my definition of FEELING GOOD to something more akin to normalcy.   

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

Offline blondbeauty

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Re: Low t-cell and healthy?
« Reply #46 on: January 16, 2010, 07:43:21 AM »
Hi Etay!

I am also the picture of health and I started taking meds when my cd4 count was 503/25%. As you can see, taking meds does not make you unhealthy, so there is no reason to delay treatment anymore, if that is what scares you... ;)
The only member in these forums approved by WINBA: World International Nail and Beauty Association.
Epstein Barr +; CMV +; Toxoplasmosis +; HIV-1 +.
Counts when starting treatment:
V.L.:80.200 copies. CD4: 25%=503
Started Sustiva-Truvada 14/August/2006
Last V.L.count (Oct 2013): Undetectable
Last CD4 count (OCT 2013): 52%= 933

Offline mecch

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Re: Low t-cell and healthy?
« Reply #47 on: January 16, 2010, 09:38:58 AM »
Are there others on this forum that have low CD4's and no meds who are living healthy lives?  I have no OI's and I am the picture of health. 

OK you don't want advice?  You just want this question answered?  Read between the lines, man!  Yes can feel healthy with a destroyed immunse system, but is both an ILLUSION and a TIMEBOMB.  When it explodes, you will be very sick, or die. HAART will do less for you than it could now. I

Some of the responses did not take into account your recent labs.  Yes, its only a few tests that your CD4 has dropped into the treatment zone.  But it has recently dropped very very low indeed.

Once again, you do NOT mention what your doctor says about the situation.

What exactly are you fishing for here.  People to tell you they live healthy lives with no immune system and actif HIV.   

Well, you will find more people who will agree with you if you join a denialist forum..  Go read about Christine Maggiore and hook up with her surviving deluded supporters.
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline Dsd09

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Re: Low t-cell and healthy?
« Reply #48 on: January 16, 2010, 10:51:52 AM »
Hi Etay

I too am the 'picture of health' and have been lucky enough to never suffer from an OI.

I got my diagnosis a few months ago, and went from 357 to 286 to 249 in a short time.

I was originally scared to take an HIV test, because I suspected the result and was worried about my outlook.
But I have now started the meds - they are really not that bad at all and my numbers are improving.

My only regret was not finding out sooner as I feel the 357 may have been a 'high' reading and I may have benefitted from starting meds earlier - the numbers are clearly a downward trend and I could have dropped to your numbers very quickly.

If I was in your shoes I would be very worried about my long (and indeed short) term outlook now, regardless of how I felt.

I just wish I had your history of numbers, as if it had been me I would have taken action much sooner.

07/2009 - Diagnosis
08/2009 - CD4 354 / VL 4700
09/2009 - CD4 286 / VL 3200
10/2009 - CD4 249 / VL n/a - Started Truvada / Sustiva
12/2009 - CD4 318 / VL <40
01/2010 - CD4 316 / VL <40 - Switched Atripla
04/2010 - CD4 370 / VL <40
12/2010 - CD4 342 / VL <40

Offline OddlyEven

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Re: Low t-cell and healthy?
« Reply #49 on: January 16, 2010, 12:50:51 PM »
Something isn't right here. I don't know you Etay and I haven't read through every post here. But with a count like yours, is your doctor not recommending meds for you? Or is the doctor recommending them and you're simply not taking them? If the doctor isn't recommending meds, then you need to switch doctors. If he/she is recommending them, then the only conclusion I can come to about you is that you have a death wish, or you live in some bubble that is protecting you from all sorts of pathogens...etc.

 


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