Main Forums => Living With HIV => Topic started by: kykeith on June 28, 2006, 11:35:37 am
Title: Fairly New to Forum and Thought I'd Post New Labs...
Post by: kykeith on June 28, 2006, 11:35:37 am
Hey All, my name is Keith and I'm in Louisville, Kentucky. I just wanted to formally introduce myself and share where I am today.
I tested positive in October 2005. Whirlwind since then of course. My numbers then were 45 CD4, <100,000 VL. My General Practictioner, who originally said we could get through this, that it was not a death sentence, etc., freaked out when he got my labs and said he wasn't eqipped to handle me with these numbers. I, in turn, freaked out as well. But, I was lucky to get a doctor who is renowned for his work in the field of AIDS. I started Norvir, Reyataz and Truvada. I also do monthly pentamamine treatments since the sulfur in bactrim breaks me out. In March I had a CD4 count of 173, and a undetectable viral load. I was pretty f-in excited. However, I just got my labs yesterday and I have a 158 CD4, and still undetectable viral load, with a 10%. My doctor said this was very normal and good. He said the most important thing is that my viral load remain undetectible. A part of me agrees, but the other part is kind of down I guess. First off, I obviously want to be over the 250 CD4 benchmark so I don't have to do the breathing treatments and just so I'm not suseptible to everything that floats in the air. On top of this I went to our AIDS Spciality clinic yesterday and reported to them some guys who I put at risk, so they could contact them.and that didn't feel so good.
I'm posting because I've only told a few people that I have AIDS --mother, therapist and another person I know who is HIV positive. Doesn't seem to roll off my tongue that easily. So I'm hoping that writing it down here and pushing the send button will provide a little relief today. And trust me, I know it can always be worse and that I should be grateful that it is what it is. But blah, blah, blah.
Sorry for the negative post. Honestly it is what it is and I'll be fine. Anyway, hey to all, and I look forward to talking with you more. Keith
Title: Re: Fairly New to Forum and Thought I'd Post New Labs...
Post by: doyourowndamndishes on June 28, 2006, 11:49:43 am
Hi Keith,
Sorry it's under these circumstance but Welcome to the Clan!
Don't beat your self up withthe numbers. As long as the viral load remains undetectable, that will give your body the chance it needs to SLOWLY repair it's immune system. Unfortunately no one can predict how long before the cd4s bump up over the 200 or as you prefer the 250 mark. If it helps at all, my initial cd4 count was 260s, v.l. 150,000+; a year later the cd4s dropped to 180s and sorry, I don't recall the vl at that time. Anyway, after 5 years of meds the vl is still <50 and the cd4s are now in the 560s where I seem to have plateaued.
Keep in touch. Looking forward to hearing more from you.
Cheers,
Alan
Title: Re: Fairly New to Forum and Thought I'd Post New Labs...
Post by: david25luvit on June 28, 2006, 12:12:39 pm
Keith...Welcome to the forum and NO! You have nothing to apologize for........ Here we take the good with the bad. Sounds like your general practicioner needs a refresher in bedside manners. When your own doctor freaks out...its only natural that you would. Glad you found an "educated" professional. Again WELCOME :-* I think you'll find this place as supportive and informative as I have.......
Title: Re: Fairly New to Forum and Thought I'd Post New Labs...
Post by: DingoBoi on June 28, 2006, 01:00:41 pm
While certainly not tactful, at least he realized his own limitations and knowledge and referred you to someone better able to treat you. GP's just don't have the knowledge or understanding to treat hiv effectively i think.
I'm glad you are seeing a specialist and welcome aboard
Title: Re: Fairly New to Forum and Thought I'd Post New Labs...
Post by: kykeith on June 28, 2006, 02:28:14 pm
hey guys, thanks for the replies...honestly, just being able to discuss it openly and frankly helps so much...since being on this forum i have received so much more education about this disease than i could have in any books...and i'm always moved by the honestly and openess of some of the people on here...it's really amazing...thanks for the support..keith
Title: Re: Fairly New to Forum and Thought I'd Post New Labs...
Post by: aztecan on June 28, 2006, 11:36:25 pm
Hey Keith, sorry for the reason, but glad you found us and chimed in.
Don't fret about the numbers. An undetectable viral load means your meds are doing what they are supposed to be doing.
I know you want to hit the magic 250, but it may take your body a bit of time to recover to that level. You are doing very well.
Regarding the doc, it reminded me of something that happened to me a number of years ago. It was 1993 or 1994. I was seeing an HIV specialist in Albuquerque, a three-hour drive, because there were no local docs able or willing to see people with HIV.
My doc in Albuquerque coordinated my care with a doc here who was a GP. The local doc would do what the doc in Albuquerque told him to do, tests, etc. If I had a problem, I could go to the local doc and things were handled via telephone.
But I remember walking in to the local doc's office one day and talking to him about something I had heard about regarding HIV treatment (this was all pre-coctail, so I think it was something along the line of selenium therapy.)
Anyway, he just looked at me, shook his head and said, "I knew one day I would meet someone who knew more about his disease than I did."
He was a sweet guy, but I ended up, after several insurance coverage changes, starting to see a local doc who came here after doing his residency with my Albuquerque doc. So, it all worked out.
But it was kinda funny having a doc say that to me.
I look forward to hearing more from you Keith. Hang in there.
HUGS,
Mark
Title: Re: Fairly New to Forum and Thought I'd Post New Labs...
Post by: randym431 on June 29, 2006, 01:02:17 am
Hi Keith hey, don’t worry. I've noticed its a bit of a normal trend for (after starting meds) the cd4 spikes in a + direction, then over a few weeks flattens out to a more realistic figure. I've seen this again and again, and my case also was like this. But the most all important is the VL. So I think you'll find during the next 6 months, your cd4 will easy go over 250. It seems to spike up fast at first, then like I said flattens out, then a gradual but strong upward trend. I'd bet you're in the upper 300's at the end of 4 - 6 months. And again, keeping on the meds without missing will keep the VL undetectable. Thats number 1. Now, what gets me to no end is how hiv is still treated like the "don’t talk about" illness. So, what happens is so many, like you and me, end up not knowing and sick because the cd4 has been damaged so much. Thats when we find out for the first time. Really tragic. Hiv testing has to become a regular and standard test FOR EVERYONE. And no matter if you're in a high risk group or not. When you go in for a sore throat, they should be doing a yearly mandatory hiv test. Of if you see a doc for a cold, a hurt foot, a twisted ankle, whatever. They need to do hiv tests on everyone, at least once. And once a year at least no matter who you are. Its easy to use meds to get the VL undetectable (for most), but building up that immune system can be a long battle for many. Its just so sad how society treats hiv. It could be almost stopped in its tracks if everyone was tested. At least if one was hiv+, they could start meds sooner before the immune was so damaged. It just irks me how something so treatable is ignored just because society and politics cant deal with it. But... you're lookin good and the numbers certainly are looking good. Just keep on the meds.
Title: Re: Fairly New to Forum and Thought I'd Post New Labs...
Post by: Poz Brit on June 29, 2006, 02:54:23 am
Hello Keith, I am just chirping in here, to welcome you to the forums and say Hi, I have not known of my status long enough to offer practical advice and also I am not on medication yet. I am glad you found your way here and hope you find it as informative and supportive as I have.
Take care,
John(UK)
Title: Re: Fairly New to Forum and Thought I'd Post New Labs...
Post by: bear60 on June 29, 2006, 08:23:15 am
Hi Keith I too just want to say Hi. The support one gets on here is really great. I think you are doing well......so keep up the good work. Check back often.
Title: Re: Fairly New to Forum and Thought I'd Post New Labs...
Post by: sdcabincrew74 on June 29, 2006, 09:31:11 am
Keith, welcome, no worries on the numbers. They will improve. I started with a CD4 count of 22. After 15 months on the same cocktail as you my cd4's were in the 650ish range. Every body is different and needs to take time to heal. Just take your meds as you are supposed to, keep the illegal drugs and alcohol to a min. Drink lots of water, eat good healthy meals, exercise a bit and all will be OK.
Title: Re: Fairly New to Forum and Thought I'd Post New Labs...
Post by: JohnOso on June 29, 2006, 09:57:02 am
Hi Keith,
I found out my status in late January, 2006. My CD4 was 13, VL 303,000 initially, so I started on meds pretty quickly after that point (Sustiva, Truvada, Bactrim, Azithromycin). My next CD4 had increased to 136, and then the third went down to 106, while VL has remained undetectable. However the doctor assured me that this is a normal response by the body -- once the brakes are put on the virus, the body's initial reaction is to surge forward with CD4 cells, and then "back off."
I understand your frustration with the lack of progress (relatively speaking). I can listen to my doc talk about how I need to think about things in the long-term, but in the back of my mind i'm thinking, "Okay in a couple of months things will be normal again."
Nope ain't gonna happen. But I happen to think you're responding nicely.
BTW, I used to date a Keith in Louisville, Kentucky about 14 years ago.... ;D
Take care, John
Title: Re: Fairly New to Forum and Thought I'd Post New Labs...
Post by: angels4kelly on June 29, 2006, 10:15:43 am
Hi Keith, I'm sorry that you feel so bummed out. I'm really glad you're here. I hope things start to get better for you soon! Take it easy and Welcome, Keith! ;D
Peace, Kelly 8)
Title: Re: Fairly New to Forum and Thought I'd Post New Labs...
Post by: Teresa on June 29, 2006, 11:58:55 am
HI Keith..Welcome to the forums!
Glad you found your way here.
Hugs Teresa
Title: Re: Fairly New to Forum and Thought I'd Post New Labs...
Post by: Lou-ah-vull on June 29, 2006, 06:27:39 pm
Keith,
From a fellow Lou-ah-vullian, greetings! As everyone else says, the best news is that you are undetectable. The cd4 climb takes a bit longer...but you have every reason to be fully adherent to the regimen because it is working. Am curious who you are seeing for treatment...I am very satisfied with my ID doctor but I have not been involved with a clinic. Maybe we could discuss this in a PM.
At any rate, my best wishes for you!
Gary
Title: Re: Fairly New to Forum and Thought I'd Post New Labs...
Post by: Life on June 29, 2006, 09:58:48 pm
Keith, I would have loved to see the look in your GP's eyes when he looked at your numbers (hair-on-end, glasses cock-eyed, shaky hands, quivering lips. For a GP who goes Thu this is commonly referred to as a FIAM or "Fuck I am Screwed". I am glad you found an HIV Specialist. The ever changing dynamics of HIV is a full time job with little time to spend on other ID's. Feel confident in knowing you have taken control and are now back in the drivers seat. Welcome to AIDSMEDS and stay close my friend! ::)
Love
Title: Re: Fairly New to Forum and Thought I'd Post New Labs...
Post by: Jeffreyj on June 30, 2006, 05:07:31 am
The really good news here is you are undetectable. Congrats on that. Welcome to the group!
Title: Re: Fairly New to Forum and Thought I'd Post New Labs...
Post by: kykeith on June 30, 2006, 08:07:58 am
Wow...thanks all for the kind words and sharing your experiences. Today, I'm so much better. Just was one of those days. Actually, I'm in a great mood this morning. It's almost the kickoff of the 4th of July weekend and I'm ready to just do nothing. Not too exciting but just what I need.
John, funny that you dated a guy named Keith in Louisville, I know there's several of us flitting round. However, I was not in Louisville at the time. But you never know, of the last four guys I dated, three were named John. :)
Gary, my doc is John VanArdsdale. He's so unbelievable. I can't even tell you. His bedside (I guess that's what you call it) manner is amazing. He is constantly researching this disease and also teaches at the University of Louisville. He really does care. I put all this info on here because I'm not sure how to PM someone. Let me know and we can talk offline. Talk to everyone soon. Keith
Title: Re: Fairly New to Forum and Thought I'd Post New Labs...
Post by: david25luvit on June 30, 2006, 03:37:41 pm
Ah! Can you feel the love? Keith :P
I love this place...these wonderful supportive people. :-* :-* :-*
Title: Re: Fairly New to Forum and Thought I'd Post New Labs...
Post by: AC_72 on June 30, 2006, 07:13:28 pm
Today is my first outreach...and it really helps to see how supportive everyone is!