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Author Topic: Finally decided to stop lurking...  (Read 5628 times)

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Offline oh my...

  • Member
  • Posts: 12
Finally decided to stop lurking...
« on: December 06, 2007, 06:27:04 AM »
Hello Everyone...

After several months of lurking about on the site, I finally decided I should open my mouth and drop in and say hi.  I found out I was poz at the beginning of July - started to seroconvert for my birthday at the end of June - what a fantabulous birthday that was...lol  This site has helped to keep me sane through the weeks thereafter.  Although many of you have no idea who I am, seeing you online everyday means something to me - being able to connect to other poz people, even if it is one sided until now.  I don't know why alot of us do this, but I, like alot of other newbies feel the need to spill out my numbers and history, so bear with me...I shall bore you all with my story too.

End of June I had a horrible ulcer in my mouth that wouldn't heal.  I get mouth ulcers all the time, and have been since my early teens, so I thought nothing of it until this one just wouldn't go away and kept getting worse.  Finally after not being able to eat for 8 days and losing over 25lbs, I went to the doc (I'm stubborn and hate going, plus as a bigger guy, losing 25lbs wasn't such a bad thing).  In the office she seemed less concerned with the ulcer and not eating, and more concerned with the fact that I had apparently also developed thrush, had swollen glands, etc.  She asked me to go and get a CBC, which came back terrible.  My family doctor is best friends with one of the best ID/HIV specialists in south jersey (or so I soon found out...).  Since they talk every day anyway, she consulted with her and sent me for bloodwork and chest x-ray's to look for HIV, lymphoma, leukemia, etc, to explain the drop in my white counts.  At this point I knew it was going to be HIV - earlier that year I had an ongoing fling with a guy who was poz but had lied to me about his status - not coming clean until later on.  I thought I might have dodged the bullet because I had been vigilant about getting tested in the months after to see if I was infected or not and had been testing negative up to that point.  Turns out I was wrong.  I had bloodwork sent out for PCR analysis, and I got a phone call from the doctor telling me I was positive.  She referred me to her friend.  Saw the ID doc in mid-July and found out that she asked Lisa (my family doc) to run the other associated blood work for HIV, I found out I had a viral load that was in excess of 750,000 and a cd4 count of 22.  My ID doc wasn't sure if I had been infected for some time, or since I was adamant that I had negative antibody tests a couple months prior, if I was caught in the initial acute stages of infection.  I was put on preventative antibiotics and sent for more bloodwork to see.  The second round of blood work came back better - VL 305,000 CD4 509, and I came off the antibiotics.  Although I was upset by the new drama in my life, I thought things would go back to normal for a while and I'd play the wait and see game we all do about when we go on meds.  I had this site, I had my close family and friends who knew...

Then in October came the lump...

I found a lymp node on my neck that became swollen to the point of being visible to other people looking at my neck.  My docs put me on an antibiotic, which didn't help, so I was sent for a CT scan.  In the mean time, that one lump became 4, one of which was very tender and painful.  The CT scan showed that all of the lymph nodes in the left side of my neck were incredibly swollen, and I was sent to yet another specialist to talk about the dreaded c-word.  The head and neck surgeon looked at my history, my scans, told me I needed a biopsy and that I most likely had lymphoma.  Let's just say I was less than pleased.  The ID doc decided that it was best to start therapy at this point for the HIV so that if I was in need of chemo, I'd respond better.  At the end of October I started Atripla, and on halloween I went in to have a lymph node removed and biopsied.  After vascilating between thinking my life was over, to thinking I'd be ok, to thinking my life was over again, it turned out that I just had swollen lymph nodes.  No cancer, and although my ID doc sent out a bunch of blood looking to see if I might have anything like taxoplasmosis, it looks like I'm back to being fine again (except for the crazy dreams from the sustiva, although I'm beginning to like them...)  My last set of number which came just before I started the Atripla had me at VL 53,900 CD4 590.  I go back to her on the 18th so we'll see how the meds are doing...

Wow - when I started this message I was only going to log on and say a quick hi.  I had no intentions of spilling out my medical history of the last 6 months, although I feel much better now that I have.  Well, here's to actually talking to all of you on the forums instead of lurking in silence...

-David

Offline Ann

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  • It just is, OK?
    • Num is sum qui mentiar tibi?
Re: Finally decided to stop lurking...
« Reply #1 on: December 06, 2007, 07:53:28 AM »
Hi David,

Welcome to the forums! I'm glad you found us and I'm glad you decided to come out of lurk mode. It sounds as though you've had a pretty rough six months, but it also sounds as though you're coming out of that bad patch now. Onward and upward, eh? Your numbers at last count weren't too bad and I'll bet you go undetecable quickly and your CD4s will skyrocket.

As you've been lurking for a while, you probably already know about the Welcome threads, but just in case you don't, they're at the top of some of the forums and I'd like to invite you to check them out. The one in Living has a list of links to all the other things this site has to offer, such as the Lessons.

I'm sorry you "had" to join us, but I'm glad you did.

Hugs for the new guy...

Ann
xxx
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 dgr20002

  • Member
  • Posts: 288
Re: Finally decided to stop lurking...
« Reply #2 on: December 06, 2007, 07:58:25 AM »
Hi David.

Sending hugs your way too.

David also

Offline keyite

  • Member
  • Posts: 514
Re: Finally decided to stop lurking...
« Reply #3 on: December 06, 2007, 08:06:23 AM »
Welcome David. Like Ann says, it sounds like it's been a trying few months but things can only get better from here on in. Looking forward to hearing more from you.

Offline RapidRod

  • Member
  • Posts: 15,277
Re: Finally decided to stop lurking...
« Reply #4 on: December 06, 2007, 09:51:54 AM »
Welcome to the forums.

Offline komnaes

  • Member
  • Posts: 1,893
Re: Finally decided to stop lurking...
« Reply #5 on: December 06, 2007, 10:17:00 AM »
Welcome to the forums, the one big cyber-family that can get in times dysfunctional but mostly warm and wonderful.

Come and share more when you feel like.

Hugs, Shaun
Aug 07 Diagnosed
Oct 07 CD4=446(19%) Feb 08 CD4=421(19%)
Jun 08 CD4=325(22%) Jul 08 CD4=301(18%)
Sep 08 CD4=257/VL=75,000 Oct 08 CD4=347(16%)
Dec 08 CD4=270(16%)
Jan 09 CD4=246(13%)/VL=10,000
Feb 09 CD4=233(15%)/VL=13,000
Started meds Sustiva/Epzicom
May 09 CD4=333(24%)/VL=650
Aug 09 CD4=346(24%)/VL=UD
Nov 09 CD4=437(26%)/VL=UD
Feb 10 CD4=471(31%)/VL=UD
June 10 CD4=517 (28%)/VL=UD
Sept 10 CD4=687 (31%)/VL=UD
Jan 11 CD4=557 (30%)/VL=UD
April 11 CD4=569 (32%)/VL=UD
Switched to Epizcom, Reyataz and Norvir
(Interrupted for 2 months with only Epizcom & Reyataz)
July 11 CD=520 (28%)/VL=UD
Oct 11 CD=771 (31%)/VL=UD(<30)
April 12 CD=609 (28%)/VL=UD(<20)
Aug 12 CD=657 (29%)/VL=UD(<20)
Dec 12 CD=532 (31%)/VL=UD(<20)
May 13 CD=567 (31%)/VL=UD(<20)
Jan 14 CD=521 (21%)/VL=UD(<50)

Offline bear60

  • Member
  • Posts: 4,104
Re: Finally decided to stop lurking...
« Reply #6 on: December 06, 2007, 03:01:07 PM »
Hi David
Just thought I'd welcome you also.  I saw you are in South Jersey? There is a pretty good Aids Service Organization in your area and since I am in Philly, I have had friends associated with it. I am sure they have support groups and activities you might be interested in.
Just a suggestion.
Here is a link:  http://www.southjerseyaidsalliance.org/
Poz Bear Type in Philadelphia

Offline BirdBear718

  • Member
  • Posts: 105
Re: Finally decided to stop lurking...
« Reply #7 on: December 06, 2007, 09:13:41 PM »
Hello David!  You seem to be holding up pretty well - good for you!!!  As I am sure you have read, if you feel like venting or sharing news, sharing joys, whatever -- you can do that on these forums.  The people here are very supportive.

Best wishes to you!

Offline Winiroo

  • Member
  • Posts: 2,082
  • Positive since 1991
Re: Finally decided to stop lurking...
« Reply #8 on: December 06, 2007, 10:07:26 PM »
Nice to read you David. I got a nifty scar on my neck for the same reasons.

Offline tinydaniell

  • Member
  • Posts: 49
Re: Finally decided to stop lurking...
« Reply #9 on: December 06, 2007, 11:24:27 PM »
Welcome and Good Luck

Michael

Offline oh my...

  • Member
  • Posts: 12
Re: Finally decided to stop lurking...
« Reply #10 on: December 08, 2007, 03:12:21 AM »
Just wanted to thank everyone for the warm welcome.  It's nice to know I can add myself to this nice big dyfunctional cyber family to quote Shaun (I am one who choses to see the "fun" in dysfunctional...lol)

Offline oh my...

  • Member
  • Posts: 12
Re: Finally decided to stop lurking...
« Reply #11 on: December 08, 2007, 03:24:28 AM »
Hi David
Just thought I'd welcome you also.  I saw you are in South Jersey? There is a pretty good Aids Service Organization in your area and since I am in Philly, I have had friends associated with it. I am sure they have support groups and activities you might be interested in.
Just a suggestion.
Here is a link:  http://www.southjerseyaidsalliance.org/

Thanks Bear, but I'm in West Deptford - just over the bridge from you - so Atlantic City is a bit far.  There is a local ASO here, AIDS Coalition of Southern NJ, but I've yet to check them out.  Any familiarity with them? 

Offline Mike2008

  • Member
  • Posts: 76
Re: Finally decided to stop lurking...
« Reply #12 on: December 16, 2007, 01:26:08 PM »
Welcome David, I am kind of a lurker too.  I tend to isolate myself alot.  I saw this quote on another board I lurk around:
       "The zebra that strays from the herd gets eaten by the lions."
4-27-07  cd4 490  vl 1857
6-28-07  cd4 418  vl 993
started Atripla 9-17-07
10-9-07  cd4 502  vl,<75
1-15-08   cd4 473 vl< 75
blood platlets 31-26-79-20 -0-63-109

Offline aztecan

  • Member
  • Posts: 5,384
  • 29 years positive, 56 years a pain in the butt
Re: Finally decided to stop lurking...
« Reply #13 on: December 20, 2007, 09:47:24 PM »
Hey David,

Welcome, I am glad you found and decided to chime in.

You sound like you have your head on pretty solidly. Keep up the good work.

HUGS,

Mark
"May your life preach more loudly than your lips."
~ William Ellery Channing (Unitarian Minister)

Offline PeteNYNJ

  • Member
  • Posts: 979
  • When life gives you AIDS...make LemonAIDS!
    • Dance for Me, Puppets
Re: Finally decided to stop lurking...
« Reply #14 on: December 28, 2007, 03:24:05 PM »
Hey David

Welcome - sorry you had to join but such is life.  A little of 2 years poz here so I know what you are going through.  Ever need to vent or chat feel free to drop me a PM

Best of luck to you
Pete

Offline pozguy75

  • Member
  • Posts: 1,239
    • POZitively Speaking
Re: Finally decided to stop lurking...
« Reply #15 on: December 29, 2007, 09:06:35 PM »
Welcome aboard!
You have had a few trying months...but like the others, I am glad you found us here.
I look forward to hearing from you and about you.
Dx 2005
ATRIPLA

Offline northernguy

  • Member
  • Posts: 1,347
Re: Finally decided to stop lurking...
« Reply #16 on: January 01, 2008, 09:35:21 PM »
It always seems odd to me, "welcoming" people here, but glad you found us, and that your lump turned out to be benign.
Apr 28/06 cd4 600 vl 10,600 cd% 25
Nov 8/09 cd4 510 vl 49,5000 cd% 16
Jan 16/10 cd4 660 vl 54,309 cd% 16
Feb 17/10 Started Atripla
Mar 7/10 cd4 710 vl 1,076 cd% 21
Apr 18/10 cd4 920 vl 268 cd% 28
Jun 19/10 cd4 450 vl 60 cd% 25
Aug 15/10 cd4 680 vl 205 cd% 27
Apr 3/11 cd4 780 vl <40 cd% 30
Jul 17/11 cd4 960 vl <40 cd%33
April 15/12 cd4 1,010 vl <40 cd% 39
April 20/12 Switched to Viramune + Truvada
Aug 2/12 cd4 1040, vl <40, cd% 38
Oct 19 cd4 1,110 vl <40 cd% 41

Offline PaulinNJ

  • Member
  • Posts: 124
Re: Finally decided to stop lurking...
« Reply #17 on: January 10, 2008, 09:36:50 PM »
David-
It may seem 'odd' to welcome anyone to this forum, in fact, I have no doubt many or all of us wish there was no reason for it to exist (i.e. that we had a cure or this damned disease didn't exist!) however, in time, things WILL get better. I started out with a viral load about your range and a CD4 around 120 - that was in 2001. It seems like a lifetime ago however, from the beginning, with everything rattling around in my brain, and with all the emotional highs and lows from minute to minute, somehow my brain or survival instinct kicked in and I told myself my priorities were physical and mental health. I will not pretend it was an easy road, but my CD4's are up around 1200 now with an undetectable viral load (I'm not bragging, just sharing what a success story is no doubt in store for you!).

By reaching out, you have taken the first step of many in a great direction, and for that you should be proud. I found myself in therapy one day talking about finding 'the silver cloud'. You will find yours. Something about the urgency of getting your physical health in shape, closely followed by your mental health, pushes one in a direction to find who and what one loves in and about life.

Since you're in New Jersey, there are a number of resources available to you. I urge you to contact Hyacinth Foundation in New Brunswick (with many satellite offices throughout NJ)  and do a little research via Hyacinth and online as to what's available to you. Support is important and there's plenty here and face to face as well. I live in Bergen County - not sure what county you are in, but Hyacinth can point you in the right direction for any needs you might have - most importantly, support.

Like you, I planned on a quick 'hi' and to let you know about services and support. It's all new to you and from what I remember, the first several months were like a scene from Great Adventure. Please keep in touch and let us know how you're doing and if you have any questions, especially concerning what's available to you here in NJ.

Sincerely,
Paul
Laugh often - the alternative ain't worth it!
"Ain't I a stinker?" -- Bugs Bunny
From 120 t's, shingles and high VL in 2001
To 1200+ t's and undetectable in 2007.
2010 remain undedect. and 1000 CD4.

 


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