Main Forums > I Just Tested Poz

So here goes my story...

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positivelynerd:
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. 

texaninnyc87:
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!

Jmarksto:
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

lincoln6echo:
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. 

wolfter:
Just wanted to send a quick welcome. 

Wolfie

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