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Author Topic: So here goes my story...  (Read 3996 times)

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Offline positivelynerd

  • Member
  • Posts: 33
  • Life isn't a struggle, it's a wiggle.
So here goes my story...
« on: December 27, 2012, 04:21:41 AM »
I'm not sure if this is exactly where I should be posting, I cover a few forum topics here, but I feel this is most apropos.  My apologies in advance if not.

I had been a bit sick over summer, not thinking too much of it at first. As I felt more things just go wrong in my body- diarrhea, rash, ache in my left side, acne- which has always been so healthy, I thought there had to be some underlying problem.  In hindsight, my acute infection started May 25th.  I tested positive September 25th, she said I took it well.  Truth is, after I got the phone call, I knew.

My friends were great.  No, excellent.  Amazing?  No words really...  they still are.  I've been so surprised by peoples' reactions (in a good way), outreach, support.  But I still deal with feelings of inadequacy, unworthiness of love, being tainted, dirty, nonsexual.  There's good days and bad days to be sure. I try to tell myself that this is a marathon, not sprint. 

There's a treatment clinic at the local hospital, so I went the next week to see what I needed to do.  The case worker was great, asked if I was interested in doing a clinical trial and I said, "Of course."  I figured if I could contribute, I would.  Ya know, all for the progress of science.  My first labs were taken on Oct 12, CD4 count of 285 and a VL of 599,000 (Um, yikes?  But I was told by my friend to expect high numbers and he had seen higher, perusing these forums, I realized the truth in that). 

I was determined to be a "qualified subject" and placed in the control group of a two year efficacy study of a new integrase inhibitor, GSK1265744, so I was put on Sustiva and Epzicom.  More labs drawn, this time CD4 274, 18%, and VL of 399,000 (10/25/12).  My body was naturally bringing down my viral load perhaps?  I know the VL spikes during ARS so maybe it was on the down swing at this point.  I was told one number does little service to your progression and to look at trends over time. 

Marathon, not a sprint.

I started meds on October 25th.  It seems as though the 25th is my day.  Sustiva really kicked my ass the first couple of days.  As it does to many I've noticed.  I had to have someone stay with me to make sure I would wake up on time in the morning. 

11/8/12: CD4 412, 24%, VL 1790.  Great!
11/20/12: CD4 350, 28%, VL 1560.  Meh, but progress nonetheless.
12/19/12: CD4 293, 24%, VL 584.  A mixed bag. 

In the two months since I started treatment, a majority of the really bad side effects have abated.  I still have trouble concentrating in the morning.  I'm trying to be strong about it, see a silver lining, remain optimistic and hopeful,  but I feel there are few people I can relate to.  Dating already sucks so much, to add this to the mix just seems so... hopeless.  The internet and smartphones make it easier to disclose, but are rife with insecurity.  And to be honest, I'm so much cooler in person!  I sell myself short being online but keep at it for whatever reason. 

I just wanted to put myself out there, connect with some people who know a lot more about this than I do, and maybe help someone out with my story.  It proved to be an appropriate form of catharsis as well!  Thanks for listening. 
5/25/12 Seroconversion
9/25/12 Diagnosed
10/12/12: VL- 799k, CD4 285
10/25/12 VL- 599k, CD4 274 
Started Sustiva + Epzicom
11/8/12: VL- 1790, CD4 412, 24%,
11/20/12: VL- 1470, CD4 350, 28%
12/19/12: VL- 584, CD4 293, 24%
1/16/13: VL- 411, CD4 404, 27%
2/13/13: VL- 314, CD4 523, 20%
3/13/13: VL- 171, CD4 404, 26%
4/10/13: VL- 96, CD4 397, 27%
5/8/13: VL- UD, CD4 422, 26%
6/5/13: VL- UD, CD4 462, 31%
7/24/13: VL- UD, CD4 559, 33%

"The most beautiful thing we can experience is the mysterious. It is the source of all true art and all science. He to whom this emotion is a stranger, who can no longer pause to wonder and stand rapt in awe, is as good as dead: his eyes are closed." -A. Einstein

Offline texaninnyc87

  • Member
  • Posts: 245
Re: So here goes my story...
« Reply #1 on: December 27, 2012, 05:32:01 PM »
Just wanted to write you a quick welcome before i go see a movie with the mother.  8)

Welcome to the forums! Sorry you have to be here. I was dxed just a few weeks before you, starting meds in a week or so. Kudos to you for signing up for the clinical trial. It's people like you who are helping to advance therapies for everyone else.

My starting numbers aren't too far off from yours. CD4 300 VL 129,000 (so yours was a LITTLE bit higher... :) ) i wouldnt worry too much about the slight CD4 changes. If you look at your numbers your percentage now is the same as when your cd4 was in the 400s and all kind of things can influence the counts. At least your VL is quickly reaching at UD point!
Dxd: 9/11/12
Blot confirmed: 11/12
12/12 cd4: 280 (20%) vl: 129,000
1/13 $tribild
2/13 cd4: 350 (26%) vl: 80
4/13 cd4: 510 (29%) vl:: 35
6/13cd4 350 (31%) vl: 21
9/13 cd4 492 (30%) vl: ud
12/13 cd4 846 (36%) vl: 100
1/14 cd4 480 (31%) vl: UD
3/14 cd4 650 (33%) vl: UD
6/14 cd4 410 (35%) vl: UD

Offline Jmarksto

  • Member
  • Posts: 477
Re: So here goes my story...
« Reply #2 on: December 27, 2012, 09:28:11 PM »
Hey Positively;

Sorry you need to be here, but welcome - you did find a great place with good information and great support.  It is great that you have such a good support network.

In terms of felling unworthy of love, tainted, and dirty...I think most of us feel that way and it takes some time to work through (at least it is for me), but has already gotten better for me in a short period.

Thanks for putting yourself out there (here),  take care,

JM
03/15/12 Negative
06/15/12 Positive
07/11/12 CD4 790          VL 4,000
08/06/12 CD4 816/38%   VL 49,300
08/20/12 Started Complera
11/06/12 CD4   819/41% VL 38
02/11/13 CD4   935/41% VL UD
06/06/13 CD4   816/41% VL UD
10/28/13 CD4 1131/45%  VL 25
02/25/14 CD4   792/37%  VL UD
07/09/14 CD4 1004/39%   VL UD

Offline lincoln6echo

  • Member
  • Posts: 109
Re: So here goes my story...
« Reply #3 on: December 28, 2012, 12:17:19 AM »
Hey Pos.

Are you trying to impersonate me? lol
Seriously, I started reading your post and before I finished thought there were a lot of similarities in our story.

I'm on the clinical trial that you are, except I'm on the GSK 744 and Epzicom (Kivexa) arm.  I thought the same way about going on the trial, so I went for it. 
I was infected in June, Diagnosed Aug 31, started meds Oct 2nd. 

I just got my latest labs today.
I went from a VL of 9 million down to 540 now
CD4 of mid 300's to mid 700's now. 
% started out at 6% I think and now I'm 18%.

As you probably know the clinical trial states that in order to progress to the next phase, you have to be UD by a certain date. For me that's Jan 23.  So i'm not sure how I'm going to do in the next month, but if I'm UD by the 23rd then i'll move to the 2nd round. If not, I have to switch to a new regimen.  I've had a very good experience with the trial so I'm really hoping I can make it.

Either way, i'm glad I have such good care and that the meds are working.

Feel free to give me a shout, would be cool to hear about your experience with the trial so far. 

Tex, good luck on your meds! What are you going to be taking? and J, thanks for the encouraging words.

lincoln. 


Offline wolfter

  • Member
  • Posts: 4,460
Re: So here goes my story...
« Reply #4 on: December 28, 2012, 02:34:38 AM »
Just wanted to send a quick welcome. 

Wolfie
Complacency is the enemy.  ;)  Challenge yourself daily for maximum  return on investment.

Offline positivelynerd

  • Member
  • Posts: 33
  • Life isn't a struggle, it's a wiggle.
Re: So here goes my story...
« Reply #5 on: December 28, 2012, 03:15:45 AM »
Thanks all.

Tex- hope your movie was good!  I haven't been to the theater in ages it seems.  And thanks, I had a lot of friends skeptical of the trial.  Good luck with the meds.  Like Lincoln asked, do you know what you're being put on? 

JM- It has gotten better, I've actually been able to sleep with someone and not feel like my skin was crawling.  Graphic huh?  I sought therapy through the clinic but I didn't really mesh with the therapist.  I went to a great psychologist during high school, so I know how important that bond is.  I've been trying to gather the courage to go to a local support group but I keep making excuses and telling myself, "Next week."  Maybe a good New Years resolution...

Lincoln- Super jelly.  I totally wanted to be in the experimental group!  The charge nurse said he had never seen someone so disappointed about which arm they got placed in.  It sounds like you got diagnosed during ARS, did you have any symptoms?  Considering your high VL, you're making great progress.  I hope you get another log reduction in the next couple weeks!  How have the side effects been?  Sustiva is a beast but I'm learning how to deal with the side effects better.  It's put me out of commission a couple of days, especially if I have a heavy night of revelry.  Otherwise the trial has been great though, the charge nurse is a sweetheart and so supportive.  It's like "Cheers" in there!  Everybody knows my name!

Thanks again for all the kind words.  Happy New Year!

-D
5/25/12 Seroconversion
9/25/12 Diagnosed
10/12/12: VL- 799k, CD4 285
10/25/12 VL- 599k, CD4 274 
Started Sustiva + Epzicom
11/8/12: VL- 1790, CD4 412, 24%,
11/20/12: VL- 1470, CD4 350, 28%
12/19/12: VL- 584, CD4 293, 24%
1/16/13: VL- 411, CD4 404, 27%
2/13/13: VL- 314, CD4 523, 20%
3/13/13: VL- 171, CD4 404, 26%
4/10/13: VL- 96, CD4 397, 27%
5/8/13: VL- UD, CD4 422, 26%
6/5/13: VL- UD, CD4 462, 31%
7/24/13: VL- UD, CD4 559, 33%

"The most beautiful thing we can experience is the mysterious. It is the source of all true art and all science. He to whom this emotion is a stranger, who can no longer pause to wonder and stand rapt in awe, is as good as dead: his eyes are closed." -A. Einstein

Offline texaninnyc87

  • Member
  • Posts: 245
Re: So here goes my story...
« Reply #6 on: December 28, 2012, 03:22:05 AM »
Not sure yet. Still waiting on the results of my genotyping and stuff to see if i have any resistance. I was hoping for stribild but my doc is reluctant because its new and all the possible kidney issues associated with it. She's also ruled out atripla because of my anxiety issues so it's looking like maybe complera or a truvada combo. She also doesnt really want to put me on the complera because ive had issues with eating disorders and she doesnt like the calorie counting complera requires. Looks like i might not get a one pill a day option for a bit...we'll see!
Dxd: 9/11/12
Blot confirmed: 11/12
12/12 cd4: 280 (20%) vl: 129,000
1/13 $tribild
2/13 cd4: 350 (26%) vl: 80
4/13 cd4: 510 (29%) vl:: 35
6/13cd4 350 (31%) vl: 21
9/13 cd4 492 (30%) vl: ud
12/13 cd4 846 (36%) vl: 100
1/14 cd4 480 (31%) vl: UD
3/14 cd4 650 (33%) vl: UD
6/14 cd4 410 (35%) vl: UD

Offline positivelynerd

  • Member
  • Posts: 33
  • Life isn't a struggle, it's a wiggle.
Re: So here goes my story...
« Reply #7 on: December 28, 2012, 03:56:44 AM »
Well Tex, you're gonna miss out on all the fun Atripla brings!  There really is a plethora of options out there so I'm sure your Dr. will find a good fit for you.  The structure of the study I'm in has me taking Sustiva and Epizicom in separate pills.  Plus, my multivitamin pack (there's 6) and my probiotic has me taking 9 pills a day.  Yes, 7 of those are optional, but I don't have a huge problem with the separate pills.  I get to put them all in a cute little pillbox that I can put stickers on and bedazzle to my heart's content!

Good Luck!
5/25/12 Seroconversion
9/25/12 Diagnosed
10/12/12: VL- 799k, CD4 285
10/25/12 VL- 599k, CD4 274 
Started Sustiva + Epzicom
11/8/12: VL- 1790, CD4 412, 24%,
11/20/12: VL- 1470, CD4 350, 28%
12/19/12: VL- 584, CD4 293, 24%
1/16/13: VL- 411, CD4 404, 27%
2/13/13: VL- 314, CD4 523, 20%
3/13/13: VL- 171, CD4 404, 26%
4/10/13: VL- 96, CD4 397, 27%
5/8/13: VL- UD, CD4 422, 26%
6/5/13: VL- UD, CD4 462, 31%
7/24/13: VL- UD, CD4 559, 33%

"The most beautiful thing we can experience is the mysterious. It is the source of all true art and all science. He to whom this emotion is a stranger, who can no longer pause to wonder and stand rapt in awe, is as good as dead: his eyes are closed." -A. Einstein

Offline lincoln6echo

  • Member
  • Posts: 109
Re: So here goes my story...
« Reply #8 on: December 28, 2012, 06:46:46 PM »
When the Doc and the clinical nurse talked to me about the trial and told me sustiva was a possibility I was kinda nervous about it just because I have had anxiety in the past and didn't want to upset the cart.  When I found out I was on that arm, I was very very happy.  My clinic is like a party sometimes...there is always food and drinks and the staff all act like they work somewhere other than a clinic. It's pretty cool. They always buy me breakfast when I come in for my clinical trial stuff lol

As far as ARS and symptoms, yes. It was pretty brutal.  I flew to another city in the states to get away for a couple days.  The morning after I got there I was laying in bed in the hotel room wondering if someone had bashed my body with a baseball bat overnight while I was sleeping. I was super achy and sore, cold shivers then night sweats, fever, massive headache. Every time I moved I was in such discomfort.  I spent the whole three days in bed, a total waste of a trip.  The flight home was awful and could barely get myself to the airport.  A month or so after that I started to have quite a few skin issues, breakouts, folliculitis, etc.  Also, my hair started to fall out in droves and I figure by the end of it I probably lost over half the count of hair on my head.  It has since stopped falling out and is all growing back now thankfully. 
Still some skin issues and I have insomnia.  I'm hoping those go away soon.

Side effects: GI issues. Gas, bloating and the runs. This has started to calm down slowly though. 

I hope I come down enough to make it to UD by the 23rd...here's to hoping!

Good luck with yours..let us know how your counts are going.


Offline positivelynerd

  • Member
  • Posts: 33
  • Life isn't a struggle, it's a wiggle.
Re: So here goes my story...
« Reply #9 on: December 28, 2012, 08:11:39 PM »
Lincoln,

My symptoms were like a stomach bug- fever, malaise, diarrhea.  Then they put me on antibiotics, cleared it up, but I felt like hell.  I thought it was the Cipro.  Then the rash.  Follicitis.  Sebhorreic dermatitis, then the phone call.

The best thing for my GI issues was probiotics.  Florastor was great, Culterelle, Kefir yogurt drink.  I think the Florastor was the best, but I also got a generic store brand at a drug store that was almost as good.  The doctor never mentioned any interactions with my meds so I've kept on them, though he said with my VL down and CD4 improving I probably don't need them anymore.  Maybe I'll take a hiatus from them and see how that goes.

Best of luck on your numbers!

-D
5/25/12 Seroconversion
9/25/12 Diagnosed
10/12/12: VL- 799k, CD4 285
10/25/12 VL- 599k, CD4 274 
Started Sustiva + Epzicom
11/8/12: VL- 1790, CD4 412, 24%,
11/20/12: VL- 1470, CD4 350, 28%
12/19/12: VL- 584, CD4 293, 24%
1/16/13: VL- 411, CD4 404, 27%
2/13/13: VL- 314, CD4 523, 20%
3/13/13: VL- 171, CD4 404, 26%
4/10/13: VL- 96, CD4 397, 27%
5/8/13: VL- UD, CD4 422, 26%
6/5/13: VL- UD, CD4 462, 31%
7/24/13: VL- UD, CD4 559, 33%

"The most beautiful thing we can experience is the mysterious. It is the source of all true art and all science. He to whom this emotion is a stranger, who can no longer pause to wonder and stand rapt in awe, is as good as dead: his eyes are closed." -A. Einstein

Offline WillyWump

  • Member
  • Posts: 7,137
  • your ramblings bore Yamaguchi Kitteh
Re: So here goes my story...
« Reply #10 on: December 28, 2012, 08:59:44 PM »
Welcome aboard Nerd  ;) There are alot of good people and good info here.

-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 Fisher

  • Member
  • Posts: 276
Re: So here goes my story...
« Reply #11 on: December 30, 2012, 07:20:14 PM »
Tex:

No concern for you VL, whatsoever!  Got one of the best docs of all, here with us all along. He said "It generally takes about 3 months to reach full supression.'

As for your CD4+, though it seems like a major difference, my opinion is, there is almost no difference between your last two "takes."  Normal variation.  More important, your percetage is strong and healthy, in my opinion.

Easier said than done.  Do not fear,  You are OK!
- fisher
07/14 CD 391 %20 VL UD
04/14 CD 486 %23 VL <20
11/13 CD 351 %21  VL <20
10/13 CD 390 %16  VL <20
06/13 CD 315 %19  VL  22
02/13 CD 396 %14  VL <20
12/12 CD 392 %13  VL 320
11/12 CD 428 %13  VL 1200
*Started Meds: Atripla
10/12 CD 427 %11  VL 139000 -- 09/12 CD 408 %13 VL 92928
09/11 CD 745 %27 VL CLOT -- 10/10 CD 863 %29 VL 2782
10/09 CD 597 %30 VL 2537 -- 05/08 CD 809 %28 VL 1504
04/07 CD 797 %25 VL 3558 -- 11/06 CD 720 %28 VL 1214
06/05 CD 731 %25 VL 1575 -- 12/04 CD 1176 %30 VL 1329
01/04 CD 959 %26 VL 1011 -- 11/03 CD 1000 %28 VL 1581
12/02 CD 748 %28 -- 10/01 CD 860 %25
08/00 CD 1022 %28 -- 04/99 CD 854 %27
11/98 CD 899 %28 -- 02/97 CD 1400 %37
11/96 CD 1325  VL <500 -- 09/96 Western Blot
05/83 04/98 - Monogamous Partner Being Negative
ARS - Los Angeles Dec '82

 


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