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Author Topic: My first post  (Read 2174 times)

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Offline dannylino

  • member
  • Posts: 2
My first post
« on: October 12, 2006, 08:14:04 AM »
I was diagnosed with HIV in march 1987 and probably was infected four years previous to that so by my reckoning I have had it for 24 years. Im still not on meds and my last count, 3 weeks ago, was CD4 425, VL 19,000 and im in great health. I guess i have been lucky to have stayed so well on it for so long, and i want to stay off meds for as long as i reasonably can.

When i first was diagnosed back in the 80s i knew a lot of people living and dying with AIDS, but for the last 10 years have been out of hte HIV loop, and have been feeling a need to reconnect with others who have been living with this disease, just to see how they are all getting on. Its easy to say, and ive said it myself many times, that you can just get on with your life and not think about having hiv, and i have done that for years at a time, but of course  the REALITY is that its a  life changing event, and I would like to hear from others, both new and long termers on what has changed, for the better and for the worse. I guess i want to redraw the map of my life and would like to swap notes with others about what s it been like living with this particular Virus...

In Peace and Love

Emmet

Offline allopathicholistic

  • Member
  • Posts: 3,258
Re: My first post
« Reply #1 on: October 12, 2006, 03:05:02 PM »
Hi Emmet - Welcome - Have you ever heard the term "LTNP"? What do you think of the following thread?:

http://forums.poz.com/index.php?topic=411.0  ???


  :)

Offline Teresa

  • Member
  • Posts: 1,753
Re: My first post
« Reply #2 on: October 12, 2006, 05:39:25 PM »

Glad you found us.

Hugs
Teresa
Hubby HIV+ 5/5/06
CD4:320
  %: 26.7
 VL: <20
Atripla (started it 8/24/06)
 

Offline Queen Tokelove

  • Member
  • Posts: 6,033
  • Smokey the Smurf
Re: My first post
« Reply #3 on: October 12, 2006, 06:12:17 PM »
Danny,

Welcome! You've finally found us! Since you want to know personal experiences, I will share mine gladly, if you can get something from it great, if not, I atleast hope it was a good read. I was infected by an ex when I lived in Miami. I found out by a co-worker, who had known someone who was a nurse in a correctional facility. He also knew my ex. I'm not sure how long he had been infected but we had been together 5 yrs, so when I found out this information, I cried (was at work). When I got home I asked him about it and he admitted it was true, even then I wanted to still be with him, but to show you how much life has a sense of humor, he left me for a crackhead. Try to figure that one out! So, I continued to be tested and everything remained negative until 1997. I went through the usual emotional rollercoaster of how my life was over and no one would want me but the one thing I never did was deny that I had it.

I tried to get support from my sisters but instead they decided to disclose it to the world. Thanks to them, I now have disclosure issues as well as trust issues. I have lost a husband and some friends behind it. But I have also gained from it also. I have a different outlook on life and I cherish it more. Instead of worrying about everything and everyone, I take life one day at a time, and if something is out of my control, FUCK IT!
I have learned how quick some may turn their backs on you or how some will remain loyal. I have learned from others who are infected and share their knowledge with me. Although not out in the open about my condition, it is these people who have made me atleast want to open the door and make an effort to educate someone to hiv.

What has suffered most for me has been my lovelife. Capricorns are such emotional creatures! I feel I thrive in a relationship and although I may not have riches to offer, I have the richness of heart. I have tried to be picky with who I want to be with, who doesn't, hiv has just made the list get smaller but whoever it may be will be cherished for life. I have tried to have relationships with negs but that doesn't seem to work out well for me, so this time around I'm looking for a Poz Prince. Nothing comes when you want it to but when you least expect it.

Namaste,

Queen Akasha
Started Atripla/Ziagen on 9/13/07.
10/31/07 CD4-265 VL- undetectable
2/6/08 CD4- 401 VL- undetectable
5/7/08 CD4- 705 VL- undetectable
6/4/08 CD4- 775 VL- undetectable
8/6/08 CD4- 805 VL- undetectable
11/13/08 CD4- 774 VL--undetectable
2/4/09  CD4- 484  VL- 18,000 (2 months off meds)
3/3/09---Starting Back on Meds---
4/27/09 CD4- 664 VL-- undetectable
6/17/09 CD4- 438 VL- 439
8/09 CD4- 404 VL- 1,600
01-22-10-- CD4- 525 VL- 59,000
Cherish the simple things life has to offer

The Royal Blog

Offline aztecan

  • Member
  • Posts: 5,358
  • 28 years positive, 56 years a pain in the butt
Re: My first post
« Reply #4 on: October 13, 2006, 12:04:40 AM »
Hey Emmett,

Welcome aboard, glad you found us.

OK, a little background.

I tested positive in 1985. My first doc thought I was probably infected in June 1980 (a rather lengthy explanation that is really not important at the moment), which, if accurate, means I have had the bug for about 26 years now.

I started meds in May 1996, not long after the first triple-drug cocktail was put on the market. My CD4s had never dropped below 400 and my viral load never exceeded 65,000.

I had an aggressive doctor, and tend to be aggressive in fighting this disease myself.

In June 1996, I dropped Saquinavir (Invirase) for Crixivan. Been on Crix, AZT and 3TC (Epivir) ever since.

Current CD4s range between 1,100 and 1,400, most of the time. I yo-yo a lot. My viral load has been undetectable since July 1996.

I have had a few problems with side effects. Some gravel in the kidneys thanks to the Crix, a little touch of anemia, but nothing to worry about, thanks to the AZT and a hint or two of neuropathy and, of course, a relatively healthy dose of lipoatrophy.

I complain of brain fog, but I can still function relatively well.

All in all, I have been very lucky,

My first doc labeled me a LTNP, mainly because I managed to go 16 years without the meds. Whether my starting the meds when I did disqualifies me from the ranks of the LTNPs, I don't know.

It really doesn't matter. I have lived longer than I thought I ever would, and better than I had ever hoped.

I hope to continue doing so for some time to come.

HUGS,

Mark

« Last Edit: October 13, 2006, 12:09:21 AM by aztecan »
"May your life preach more loudly than your lips."
~ William Ellery Channing (Unitarian Minister)

Offline Eldon

  • Member
  • Posts: 2,664
Re: My first post
« Reply #5 on: October 13, 2006, 02:19:22 AM »
Hello Emmet, it is Eldon.

I believe that this should have been posted in the "Living With" Forum because you have been diagnosed for quite some time. However, you definitely have the right attitude when it comes to living with HIV/AIDS. The reality of it is that we are positive and we have to live with it. I too had went for quite some time (since 1990) without meds. It was earlier this year (2006) when I had went to the Doctor and I found out I had a low CD4 count. That is what had triggered my therapy on meds immediately to suppress the virus. Thankfully, no side effects.

Aside from that, I wish to extend to you a warm WELCOME to the forums. Here you will find encouragement, communication, interaction, understanding, some cries, some laughter, and many of your questions relating to HIV/AIDS answered. We DO have a great group of people who will listen as well as answer you. There is a lot of information on this site at your disposal. Feel free to browse through. You have found the right site.

Again, Welcome! and make the BEST of each Day!
« Last Edit: October 13, 2006, 02:22:00 AM by Eldon »

Offline dannylino

  • member
  • Posts: 2
Re: My first post
« Reply #6 on: October 13, 2006, 05:58:59 AM »
thanks for your warm replies... its a shame that your all in the usa or its a shame that im not in the usa... im in london. went to a group called str8 talk last night which is a group for heterosexuals with hiv, and enjoyed meeting lots of new people sharing stories and info. ive been feeling the need for a greater sense of community with hiv people, and think its important that we group together to fight the social stigma and terrible ignorance that surrounds this disease. after all its only a little bit of viral material yet in some people's minds it dehumanises and objectifies those with the disease into aids sufferers or victims, or even worse that they deserved it through their own immoral actions.

For years i have kept my head down and just got on with my little lot, but I now feel the need to become more active and add my weight and become more visible.

I dont know if im a lntp because i do have some viral material present, but luckily its been a small amount but its still slowly chipping away and i will prob have to go on meds at some point in the future...

anyway, thanks for your replies :)


Offline Andy Velez

  • Global Moderator
  • Member
  • Posts: 23,860
Re: My first post
« Reply #7 on: October 13, 2006, 09:06:20 AM »
Welcome, Danny. I moved this thread over to LIVING WITH as your situation seems to me to fit in better here and you're more likely to get more responses. It's good to hear from you. 

I've known a number of men who like yourself are longterm non-progressors. Several are past the 25 year mark of having tested positive and still going strong with little if any change in their stats or health.
Some in San Francisco have been studied over an extensive period in hopes of idenitfying what sustains the non-progression and how to translate that into an effective treatment for others. The jury is still out on that.

We're glad you found your way here. Whatever your specific issues maybe, it's good to be with others who understand and appreciate what it means having HIV in your life. 

Cheers,

Andy Velez

Offline DanKenny

  • Member
  • Posts: 147
Re: My first post
« Reply #8 on: October 13, 2006, 10:19:50 AM »
Emmet,

Welcome.  This is a very warm group -- I am also new to the group, and judging from the posts -- they are very warm and welcoming.  I've also been + for about 9 years, still without  meds, and healthy. So there is still hope.  Keep connected to the group, though you are far away in UK. 

Take care.....Danny
My Progress:

09/07:   771   ~    <50     ~   29%
03/07:   493   ~    227      ~   22%
02/07:   Began Meds ~~ ATRIPLA
01/07:   315   ~   45, 000  ~   18%
10/06:   350   ~   32, 430  ~   22%
04/06:   440   ~   23, 997  ~   24%
07/05:   621   ~   36,000   ~   24%
01/05:   842   ~   2306      ~   28%
07/04:   615   ~   3370      ~   27%
04/04:   674   ~   739        ~   26%
11/03:   439   ~   2800      ~   22%
Infected probably around 1997 / Diagnosed 2002

Offline angels4kelly

  • Member
  • Posts: 305
  • IT JUST IS!!.....OKAY!
Re: My first post
« Reply #9 on: October 13, 2006, 01:23:42 PM »
Welcome, Emmet ;D

I'm happy you're here!!!


Peace,
Kelly


                                               
POSITIVE SINCE-10/1990
CD4-610
CD4%-29.3
VL-UNDETECTABLE
VIREAD,VIRACEPT, EPZICOM

MOST RECENT...
10/9/2006
CD4's-714
CD4%-30%
VL-Undetectable
DIAGNOSES POSITIVE 10/90
SAME MEDS, VIREAD, VIRAMUNE, EPZICOM.

SHOOT FOR THE MOON! YOU MAY MISS,
BUT YOU'LL LAND IN THE STARS :)

Knowing others is intelligence;
knowing yourself is true wisdom.
Mastering others is strength;
mastering yourself is true power.
 
Failure is not in falling down,
but the staying down

Offline Longislander

  • Member
  • Posts: 2,486
Re: My first post
« Reply #10 on: October 13, 2006, 04:02:48 PM »
hi Emmett

Welcome! I'm a relative newbie(10 months), no meds yet. Man I can only wish to go as long as you have without meds, but even more so, I hope that soon I can go on without HIV being such a big part of my life. Looking forward to reading more about you.

Paul
infected 10/05 diagnosed 12-05
2/06   379/57000                    6/07 372/30500 25%   4/09 640/U/32% 
5/06   ?? /37000                     8/07 491/55000/24%    9/09 913/U/39%
8/06   349/9500 25%              11/07 515/68000/24     2/10 845/U/38%
9/06   507/16,000 30% !          2/08  516/116k/22%    7/10 906/80/39%
12/06 398/29000 26%             Start Atripla 3/08
3/07   402/80,000 29%            4/08  485/undet!/27
4/07   507/35,000 25%            7/08 625/UD/34%
                                                 11/08 684/U/36%

 


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