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Author Topic: POZ as of 8/11/10  (Read 19465 times)

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Offline numbersguy82

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POZ as of 8/11/10
« on: August 12, 2010, 09:23:37 pm »
Wow just writing that is a new sensation. I'm a 28 y/o Gay Male living in Fort Lauderdale. I have been ill for a few weeks and finally my doctor suspected HIV Infection and ordered a blood test. That was yesterday, and the results won't be back until next week, so I decided to get a rapid test at my local GLCC. That test returned positive. I'm newly single and of the 6 guys who I have even kissed I have only been unprotected with two of them. My most recent ex who just left me after cheating on me is obviously in my thought process. I don't care as it isn't the blame game, so I did my duty and told him I was positive and advised him to get tested. My best friend is Positive and has been a huge support so far. Luckily I have a great job as an accountant and what I'm told is good insurance. My big concern though is what the GLCC told me. I mentioned I had lost 12lbs within the last month (Due to my depression over the breakup). The tester was concerned I might be in a more advanced stage because I have lost so much weight. Is it possible in only 2 yrs I have been infected and its progressed to more than the beginning stages? I think the weight loss was superficial as I've already gained back 6lbs and Im back to 124lbs now. I have an appointment to get my first labs ran on Aug 23rd which I'm told takes about 2 weeks. I don't want to tell my family until I know what I'm dealing with. Just curious if its common for it to be so rapid, or has a month of torturing myself over my breakup and not eating just taken its toll. I'm so lucky to have a support system in place with 3 close friends already and I'm looking forward to meeting some great people here.
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Offline phildinftlaudy

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Re: POZ as of 8/11/10
« Reply #1 on: August 12, 2010, 09:28:25 pm »
Hi Numbers - welcome
I wouldn't stress over anything until you get your labs done and back.  Between now and then read up on the different lessons available on this site and make sure you ask your doc for a copy of your labs.

I am in North Miami - but lived in Fort Lauderdale/Hollywood for most of the time I have been living in South Florida.  I actually do some work with the GLCC - I had many a test done there...

My + test was done at a special event I was at - from the DOH Mobile Testing Bus....

Once again welcome --- once you get settled in to the Forums, etc. maybe we can grab a bite to eat in Lauderdale.  If you want to PM me, feel free to and I can let you know some of the different services, activities, etc. that you may want to get involved in.

Thanks for sharing - Keep us informed and welcome again!
-Phil
September 13, 2008 - diagnosed +
Labs:
Date    CD4    %   VL     Date  CD4  %   VL
10/08  636    35  510   9/09 473  38 2900  12/4/09 Atripla
12/09  540    30    60   
12/10  740    41  <48   
8/11    667    36  <20  
03/12  1,041  42  <20
05/12  1,241  47  <20
08/12   780    37  <20
11/12   549    35  <20
02/12  1,102  42  <20
11/12   549    35  <20

Offline Rev. Moon

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Re: POZ as of 8/11/10
« Reply #2 on: August 12, 2010, 10:26:48 pm »
Numbers,

Welcome to our little pozzum corner within the web. I would recommend that you wait for your labs to come back before you make any decisions or stress out in any way.  To begin with, you need to get a Western Blot confirmation of your positive status.  The rapid test won't be enough.

Moreover, the individual who assisted you may not be very well versed on this topic. If you are indeed positive then your recent weight loss and overall illness may have taken place cause you were dealing with the acute infection stage, not because you are at some advanced stage of the disease. Just as an example, I lost 14 pounds during my acute infection (or seroconversion as you may have heard people call it); all of that took place just a couple of weeks after my unprotected encounter.

So... No stress for now. Wait till you know for sure, and take it easy in the meantime.
"I have tried hard--but life is difficult, and I am a very useless person. I can hardly be said to have an independent existence. I was just a screw or a cog in the great machine I called life, and when I dropped out of it I found I was of no use anywhere else."

Offline WillyWump

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Re: POZ as of 8/11/10
« Reply #3 on: August 12, 2010, 10:46:00 pm »
Welcome Numbers :)

-Will
POZ since '08

Last Labs-
11-6-14 CD4- 871, UD
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 Matty the Damned

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Re: POZ as of 8/11/10
« Reply #4 on: August 12, 2010, 10:50:36 pm »
Shalom Numbers! :)

MtD

Offline pozniceguy

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Re: POZ as of 8/11/10
« Reply #5 on: August 13, 2010, 12:22:16 am »
you found the right place  stay cool until confirmation...

Nick
remember the good times...honor the past but don't live there
Le stelle la notte sono grandie luminose, nel cuore profondo del Texas

Offline numbersguy82

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Re: POZ as of 8/11/10
« Reply #6 on: August 15, 2010, 08:07:15 am »
Thanks for the warm welcome and the comfort everyone. I guess I've been dealing with the stages everyone goes through. Shock, diligence, denial, sadness, confusion, and now I'm more in the acceptance phase. I have chosen to not tell my family... perhaps until my health warrants it. Besides my recent ex I have chosen to only tell 3 people. They should provide me the support I need without feeling overwhelmed that at the moment everyone knows. I'm concerned that I am seroconverting as we speak. I've been having horrible fevers, night sweats, fatigue, and of course no appetite. I have had these sever symptoms for about a week now. I have to go back to work tomm so I hope I am feeling better. Well just wanted to update and to say how helpful this site has been and how nice people and helpful everyone seems to be. It's great to know this little piece of the internet exists. I will keep everyone updated when I get my test results back  :)
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Offline mecch

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Re: POZ as of 8/11/10
« Reply #7 on: August 15, 2010, 09:43:55 am »
Wait for your labs and confirmation.
Welcome to the forums.
Ignore the idiot who told you something stupid about "advanced stage".
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline john33

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Re: POZ as of 8/11/10
« Reply #8 on: August 15, 2010, 10:59:07 am »
Welcome to the forums Numbers.

Take a deep breath, ignore the tester what the tester said and be patient. It'll be OK

Offline thankyoulilmijo

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Re: POZ as of 8/11/10
« Reply #9 on: August 15, 2010, 07:41:20 pm »
Hey there MR!!

I went through a breakup and lost just about 18lbs. this was within a 2 week time span from my breakup, depression, not eating etc... When my partner told me he tested positive as he was preparing to get released from the marines I decided I needed to get tested as well.

During the 2 weeks of testing I underwent, I obtained a sore throat (the kind when its cold outside and you leave a window open at night) and had lots of coughing (we now believe that was my true seroconversion point)... I haven't been sick in 3 almost 4 years so this was odd for me.

My Dr believes that the weight loss was NOT related BUT is not 100% about it. I am currently seeing the best Infectious Disease specialist in all of Southern California and I trust him 100%.

Please prmost me that you'll stay positive and remain calm in this "waiting game" we're forced to live while we obtain our numbers... Someone close to me told me something and it clicked...   "in this day and age, we wont die from the physical effects of our infection but rather the mental torment we seemingly put ourselves through"

Offline ruralguy

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Re: POZ as of 8/11/10
« Reply #10 on: August 16, 2010, 02:24:49 pm »
Waiting for more data is one of the hard parts but hang in there until you know more.  Welcome, and keep us posted
tested positive June 19, 2009
7/3/09 vrl 9000 cd4 - 300
8/14/09 cd4 - 350, 20%
started Atripla 9/14/09
10/5/09 vrl undetectable, WOW so fast!
12/28/09 vrl undetectable, CD4 - 615  27% cholesterol down, kidney function normal
4/26/10 vrl undetectable, CD4-600, kidney and liver numbers normal
9/9/10 vrl undetectable, CD4-685
1/3/11 vrl undetectable, CD4-700
all 2011 and Jan 2012 visits vrl undetectable CD4 ranged from 715-645
5/7/2012  vrl undetectable, CD4-615, all liver, kidney, lipids, heart functions, etc normal


On Atripla:  "Your mileage may vary"

Offline numbersguy82

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Re: POZ as of 8/11/10
« Reply #11 on: August 19, 2010, 07:54:55 pm »
Should I change this to "POZ as of 8/19/10", my Western Blot confirmed my diagnosis today. The Dr was very knowledgable and comforting. He knew exactly what to say, and if I didn't know any better I would think he was POZ also. Ofcourse I'm ahead of the game and I already had my appt to see a specialist on Monday. However he was concerned that I had already developed Thrush. He said I shouldn't expect my cd4 counts to be above 300. His exact words were something like "Even 20 year olds that are HIV Pos shouldn't get thrush already, unless it has progressed to a later stage". So again the AIDS word was mentioned. I'm not going to freak out, but jeez everyone from the GLCC volunteer, to my general doctor, and now my clinical doctor has mentioned it. Any advice or words of encouragement?
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Offline ElZorro

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Re: POZ as of 8/11/10
« Reply #12 on: August 19, 2010, 08:06:46 pm »
I can't give you a ton of advice about HIV because it's just been a year for me now. I can tell you, though, that the LTS out here who told me a few months ago that things will be okay were absolutely right on mark. It does get better. Just talk it out, vent, work with your doctors, and plan to be here for a very loooong time.

And, read this post from someone with 19 years  ;) http://forums.poz.com/index.php?topic=33987.msg421043#msg421043

As to the advice I CAN give you: start saving and investing!  ;D  Had I known in my 20s that 45 is actually young, I'd have put a lot more in savings and would be traveling around the world right now; with or without HIV.

You're gonna get through this, Numbers. Count on it  ;)

« Last Edit: August 19, 2010, 08:10:24 pm by ElZorro »

Offline WillyWump

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Re: POZ as of 8/11/10
« Reply #13 on: August 19, 2010, 10:09:24 pm »
So again the AIDS word was mentioned. I'm not going to freak out, but jeez everyone from the GLCC volunteer, to my general doctor, and now my clinical doctor has mentioned it. Any advice or words of encouragement?

Nowadays the term "AIDS" has less significance than it did in yesteryear, then a diagnosis of AIDS probably meant death was inevitable and possibly quite near. Now it means anything but that. There is a fellow member on here who has had a diagnosis of AIDS for over a decade, I think his CD4's were about 50 during all this time ( I think he is up to around 125 now), regardless it never slowed this person down, he worked , lived, and has always had a nromal life, and quite happy life. Maybe he or some of the others living with an "AIDS Diagnosis" will come along and post about it further.

Hell look at my numbers in my profile, I was tanking fast and prob within 3 months I would have had a diagnosis of AIDS, I was already at 11% percentage, which my doctor said was a quasi-indicator of AIDS....now, I have pretty stellar numbers with a percentage in the 30's :)

But I guess my point is AIDS diagnosis or not you are going to be just fine :) Perfectly fine. Dont let the word "AIDS" get you down. Or for that matter low CD4's, it is all manageable.

-Will
« Last Edit: August 19, 2010, 10:12:13 pm by WillyWump »
POZ since '08

Last Labs-
11-6-14 CD4- 871, UD
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 Hellraiser

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Re: POZ as of 8/11/10
« Reply #14 on: August 19, 2010, 10:16:09 pm »
I had an AIDS diagnosis when I was diagnosed hiv+, I'm still below the 200 CD4 mark a year later and I'm perfectly healthy.

Offline mecch

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Re: POZ as of 8/11/10
« Reply #15 on: August 19, 2010, 10:33:32 pm »
Well numbers, wait and see with your CD4.  Nothing else to do really cept live in the present. If your CD4s are low, you will go on HAART and build your system back up.  The drugs work.
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline Joe K

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Re: POZ as of 8/11/10
« Reply #16 on: August 19, 2010, 11:14:17 pm »
Any advice or words of encouragement?

I'm sorry to hear of your infection, but I assure you, you will be fine. There are many reasons that you may have thrush and until you know your numbers, worrying about it all, just isn't good for you. Right now, what matters is for you to take care of you. That involves your health, your mind and spirit. I urge you to not worry about any numbers, because you have all the time in the world. Yes you are poz, and you are taking proactive steps, to manage it, so cut yourself some slack. It takes time to adjust, so don't rush it. Nothing is critical, so allow yourself to feel, what you need to feel, to help yourself adjust to your new status.

I wish I had some easy answers, as we each must find our own way to adjusting to being poz. I am glad you found us and feel free to talk about whatever is important to you. Believe me, my friend, you will be fine. You can adapt and live a long life with HIV. I have been doing just that for 26 years.

Welcome to the forums.

Joe

Offline Andy Velez

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Re: POZ as of 8/11/10
« Reply #17 on: August 20, 2010, 08:36:35 am »
Dear Numbers,

As you are already finding out there is a wealth of support for you here as you have been adjusting to having HIV in your life. From what you have written here I would say you are doing very well in handling this big change in your life. Those scary comments about thrush from whomever notwithstanding, you are going to do well. And by the way, thrush is not an HIV-specific occurrence. So please don't give that more importance than it deserves. 

What is important is that you have a doctor monitoring your numbers and that it be someone whom you can work well with as a partner in keeping you healthy. Gradually you are going to learn everything you need to know about staying healthy. And of course you are always welcome here to ask questions and to talk about anything you want to that's going on in your life. You'll see that as important as HIV is, it will be only a part of what your life is about.

It's always bittersweet to welcome someone new here, but the good part is we're glad to be here for you.

Welcome.
« Last Edit: August 20, 2010, 08:38:15 am by Andy Velez »
Andy Velez

Offline PeteNYNJ

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Re: POZ as of 8/11/10
« Reply #18 on: August 20, 2010, 12:36:55 pm »
People get thrush for other reasons, so don't let one symptom get your mind reeling until you get the numbers back from the doc. 

Welcome to the forums :)

Offline JonE

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Re: POZ as of 8/11/10
« Reply #19 on: August 20, 2010, 03:47:09 pm »
Wouldn't worry to much about the thrush. I have had thrush off and on for as long as I can remember (30+ years). Doctors over time have attributed it to geographic tongue. The only time it really completely disappears is when I'm on a lowcarb diet for an extended period. I just recently tested +, haven't got my numbers back yet, but I know I had thrush long before HIV.

Good luck, its a long road, so I've been told.

Offline water duck

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Re: POZ as of 8/11/10
« Reply #20 on: August 20, 2010, 05:47:14 pm »
................guess it is only normal you are feelling the myriad emotions at the present moment, like a ton of bricks just fell on your head.
 
..............so give yourself the time and the right to come to terms with it on your own pace. (the doctors are as humans as we are , they can make mistakes too)

................most importantly is to handle the situations with intelligence and not let yours emotions get the better of you , if you are able to do that , you should be fine.

Wd


Offline numbersguy82

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Re: POZ as of 8/11/10
« Reply #21 on: August 20, 2010, 06:59:19 pm »
Hey Everyone.... wow thanks so much for each and every one of you taking the time to write me. It's really comforting to read your replies. I just wanted you guys to know that is greatly appreciated, so I guess I will follow the overwhelming advise and wait for my first labs to come back. I'm feeling great at the moment.... the best I've felt in such a long time. So hey things are already looking up :) I hope everyone has a great weekend and I will def update after meeting my specialist Monday *dun dun dun* lol
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Offline thankyoulilmijo

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Re: POZ as of 8/11/10
« Reply #22 on: August 20, 2010, 07:21:40 pm »
Keep your head up sparky and stay motivated and affirmative in your ability to be you and love you.

I'm 23 and its been just a mth or so I will know on the 26 what my numbers are. Mt doctor was just like yours and I'd swear he was positive as well but that's his deal.. 

Thank you for coming here and thank you for educating yourself like a lot of people never manage to do..

J~

Offline numbersguy82

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Re: POZ as of 8/11/10
« Reply #23 on: August 21, 2010, 12:33:51 pm »
Thanks TY. I'm glad you are so positive about life and everything. How are you holding up? Are you nervous to get your numbers back? Anyways I'm crossing my fingers and saying a prayer that your tests come back great :)
JOIN US FOR PEER-ish SUPPORT Every other Friday @ 7pm EST, PM me your email address for meeting link/information

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Offline thankyoulilmijo

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Re: POZ as of 8/11/10
« Reply #24 on: August 21, 2010, 03:08:54 pm »
am I nervous... LOL.... I can't get over the fact that I'm still positive but the reality is that I am... SOOOO yes I am but regardless I'm gonna be ok....and so are you........

Offline Hellraiser

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Re: POZ as of 8/11/10
« Reply #25 on: August 21, 2010, 06:41:25 pm »
am I nervous... LOL.... I can't get over the fact that I'm still positive but the reality is that I am... SOOOO yes I am but regardless I'm gonna be ok....and so are you........

It took me a long time to look myself in the mirror and say "I am HIV+", despite the fact that nightly I'm looking into that same mirror as I chug down my Atripla and my prophylaxis drugs to keep my battered and beaten immune system running.  You'll get there and eventually you'll get to the point where it becomes such a minor facet of your life that you may forget your meds, or think about donating blood, or...etc etc etc.

Offline Scotty87

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Re: POZ as of 8/11/10
« Reply #26 on: August 23, 2010, 05:02:31 pm »
I found out that I was positive January 1st.  I had been sick a lot around october/november and hiv hadn't ever crossed my mind.  I kept breaking out in really bad hives, having night sweats, etc. and after reading more about HIV decided that I needed to be tested.  I had to call a number to get my results, which was horrible because I just put it off until after the holidays.  I didn't know what to do when I found out, particularly until I got my lab results back.  I stayed optimistic by telling myself that even if I am positive, I won't have "AIDS" because I can't have had it that long.  Everything I read said it usually takes years to develop to AIDS.  So I just did my research and learned what I needed to do to prevent myself from developing AIDS.  Unfortunately when I got my results my cd 4 was 99, which technically meant that I did, in fact, have aids.  I didn't understand how this could be because I felt fine.  I was devastated because not having aids is what I had been clinging to for hope, to have that at least be the one good thing.  For whatever reason my viral load was really low but regardless I needed to start meds.  I was scared of them, scared that they wouldn't work for me because it also came back resistant to several of the meds.  Started on Truvada, Norvir, and Prezista and within three months my cd4 was 523 and my viral load was undetectable.  Anyway, as messed up as everything seemed and as bad as I felt it was getting - things turned around.  The same will be true for you.  You are going to do well.  You are already doing everything that you should be.  If it doesn't come back the way that you want it to this time just remember that you can't change what it was, but you can always work toward making it better for the next time.  What's important is that you are now aware so that you can do what you need to in order to take care of yourself.







Offline numbersguy82

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Re: POZ as of 8/11/10
« Reply #27 on: August 23, 2010, 07:47:08 pm »
Wow thank you Scotty for sharing your story. That does provide me with a ton of Hope. Its disheartening to think your numbers could already be so low, and I myself am praying that they are atleast 300, but hey it is what it is the numbers wont lie lol. I'm glad to hear you have had such huge increases with your numbers and you are UD. That is awesome.

So I have to ask being almost a year in how are you coping? Do you think about HIV less? Have you told your family? Just curious. Thanks again for the reassurance and I will def post on Tues when I get my first lab numers back.
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Offline numbersguy82

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Re: POZ as of 8/11/10
« Reply #28 on: August 24, 2010, 06:33:28 am »
So I met with my Specialist Dr today to have my initial lab numbers ran. Her office is really nice and the staff there couldn't be more accomodating. Everyone had a warm smile and genuinely seemed happy. My Dr herself is highly trained and has a lot of HIV certifications which is why I chose her. She is a short lady of about 40, spikey Kate Gosselinish hair, and a perfect mix of bedside manner with matter of fact tell me like it is. We discussed my recent breakup and whether I was seroconverting or just depressed and run down. She thinks I have had HIV for longer than 6 mos due to already developing Thrush. Also she echoed every other Dr I've met with and isn't optomistic that my numbers are higher than 300 based on my symptoms. One thing I found odd is that she made me strip down butt assed naked. Just like that. We had just met and here I was with her finger in places that nothing has been in quite a while lol. I should have thanked her for giving me the most action that I've seen in 6 mos lol.  She wanted to do a full physical exam of head to toe just to make sure I wasn't exhibiting any other symptoms. Her "Blood Nurse" was really efficient and while I'm terrified of needles she was able to calm me down and make the million vials of blood she took seem like nothing. All in all I'm pleased with the Dr to this point. Ofcourse when we get to talking numbers and treatment I will see just how involved she is. I go back Tues for my results and I will keep everyone posted :)
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Offline PeteNYNJ

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Re: POZ as of 8/11/10
« Reply #29 on: August 24, 2010, 09:34:08 am »
Your doctor sounds great.  She should have given you a full exam because sometimes you may have an other STD such as syphilis or warts that you may miss if they are in "hard to see" places.  Plus, it is always good for guys to get their nuts checked out for lumps and such.  She seems very thorough.  She may be your HIV doctor, but it is encouraging that she is treating you head to toe including assessing your mental state.  You will see a lot of people on here have had not so great experiences with their doctors. 

Keep your chin up and keep asking questions. 

Pete

Offline AaronbytheC

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Re: POZ as of 8/11/10
« Reply #30 on: August 25, 2010, 01:50:36 pm »
Sounds like shes a good doc for you.  Finding someone you trust and are comfortable being completely honest with is key!  She is a big part of your team now.  ;D

Regardless of the results of your numbers just remember it is fixable, so don't stress! 
I know, easier said than done :P but you will be OK!
04/2012 CD4 721 / 29% / VL UD
02/2011 UNDETECTABLE!
12/2010 CD4 587 / 24% / VL 210
11/2010 Started Atripla
10/2010 CD4 420 / 18% / VL 13,500
09/2010 CD4 541 / 17% / VL 10,500
08/2010 CD4 498 / 18% / VL Not Taken
07/2010 CD4 307 / 18% / VL 9,500
06/2010 Confirmed Poz
03/2010 Infected
06/2009 Neg

Offline numbersguy82

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Re: POZ as of 8/11/10
« Reply #31 on: August 25, 2010, 04:30:36 pm »
Well I got an emergency phone call at work today from my Dr. My CD4 count was in already and it was only 73. She sent me for a second chest xray just to confirm I didn't have anything bad in my lungs. She wrote me a script for Bactrim. Now I'm just waiting to hear back about the Xrays and what Medicine she will start me on. I'm really concerned in the meantime that I will catch something. Not the best numbers, but from what I've read here not the worst. I knew I would be below 200, but I was still holding out hope for higher.
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Offline Hellraiser

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Re: POZ as of 8/11/10
« Reply #32 on: August 25, 2010, 05:43:56 pm »
Well I got an emergency phone call at work today from my Dr. My CD4 count was in already and it was only 73. She sent me for a second chest xray just to confirm I didn't have anything bad in my lungs. She wrote me a script for Bactrim. Now I'm just waiting to hear back about the Xrays and what Medicine she will start me on. I'm really concerned in the meantime that I will catch something. Not the best numbers, but from what I've read here not the worst. I knew I would be below 200, but I was still holding out hope for higher.

Sorry to hear your numbers are so low, but that's why I PM'd you the other day to kind of prepare you for what might occur.  Take comfort in the fact that I had 1/5 those numbers when I was diagnosed and I'm still doing fine a year later.  So try not to worry or panic too much, your genotyping typically takes about 2 weeks, so it'll probably be another week or so before you can begin meds.  I had to wait about 2 months post genotype for ADAP to get all settled.  Anyway have you ever taken Bactrim before?  You may want to get a backup prescription for Dapsone or Mepron just in case you have a bad reaction to Bactrim since a LOT of people do.  If you are allergic to it you'll most likely develop a fever and rash within about 12 hours of taking it.

Offline numbersguy82

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Re: POZ as of 8/11/10
« Reply #33 on: August 26, 2010, 11:06:19 am »
Thanks Hellraiser :)

I'm so far side-effect free on Bactrim. I took it a little over 14 hours ago. I decided to take the day off and just recoup. My chest xray was good so no worries there. Now in all of the waiting did you change your routine? Avoiding public places, wearing gloves or masks, etc? Your numbers were awfully low and I just wonder how concerned you were about catching something?
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Offline Hellraiser

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Re: POZ as of 8/11/10
« Reply #34 on: August 26, 2010, 11:33:33 am »
Thanks Hellraiser :)

I'm so far side-effect free on Bactrim. I took it a little over 14 hours ago. I decided to take the day off and just recoup. My chest xray was good so no worries there. Now in all of the waiting did you change your routine? Avoiding public places, wearing gloves or masks, etc? Your numbers were awfully low and I just wonder how concerned you were about catching something?

I was extremely afraid and so I did avoid people and public places, but in reality I think that was just me being paranoid.  Realize that the swine flu was going around when I was diagnosed so I was very afraid of that.  I was so sick and weak when I was diagnosed that I wasn't working though so I didn't have to go anywhere.

Offline numbersguy82

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Re: POZ as of 8/11/10
« Reply #35 on: September 04, 2010, 11:10:16 am »
Sorry to hear your numbers are so low, but that's why I PM'd you the other day to kind of prepare you for what might occur.  Take comfort in the fact that I had 1/5 those numbers when I was diagnosed and I'm still doing fine a year later.  So try not to worry or panic too much, your genotyping typically takes about 2 weeks, so it'll probably be another week or so before you can begin meds.  I had to wait about 2 months post genotype for ADAP to get all settled.  Anyway have you ever taken Bactrim before?  You may want to get a backup prescription for Dapsone or Mepron just in case you have a bad reaction to Bactrim since a LOT of people do.  If you are allergic to it you'll most likely develop a fever and rash within about 12 hours of taking it.

Man Hellraiser you are in the know :) I've been on BACTRIM for about a week now and at first didn't notic much. However the past 4 days I have had terrible fevers (102-103), terrible muscle pains and joint discomfort, and now today I devloped a rash. Its a holiday weekend so it will be until Tues until I can call my doc. Should I stop taking it altogether or just keep toughing it out. I can't work and pretty much I just sleep all day because of the pain.
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Offline Hellraiser

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Re: POZ as of 8/11/10
« Reply #36 on: September 04, 2010, 11:31:43 am »
Man Hellraiser you are in the know :) I've been on BACTRIM for about a week now and at first didn't notic much. However the past 4 days I have had terrible fevers (102-103), terrible muscle pains and joint discomfort, and now today I devloped a rash. Its a holiday weekend so it will be until Tues until I can call my doc. Should I stop taking it altogether or just keep toughing it out. I can't work and pretty much I just sleep all day because of the pain.

I'm a little loathe to give you any medical advice but I can tell you what I did in the same situation.  Once I realize I was having a bad reaction to the Bactrim I stopped taking it.

NOTICE:  Bactrim is a prophylaxis for PCP so if you stop taking it there is always the chance you could develop PCP.

However, since you hadn't gotten PCP before and this is only a 3 day window we're talking about here then I think you'll be fine.  Just weigh out your options if the Bactrim is making you feel as bad as it made me feel then I was more than fine with taking my chances without it.

Offline littleprince

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Re: POZ as of 8/11/10
« Reply #37 on: September 04, 2010, 11:35:23 am »
Quote
I've been on BACTRIM for about a week now and at first didn't notic much. However the past 4 days I have had terrible fevers (102-103), terrible muscle pains and joint discomfort, and now today I devloped a rash. Its a holiday weekend so it will be until Tues until I can call my doc. Should I stop taking it altogether or just keep toughing it out. I can't work and pretty much I just sleep all day because of the pain.

If it was me, I'd stop. Since it started so soon after starting Bactrim it's most likely to be a reaction. I'd also say that it's important to be checked by a doctor. Although it could just be the Bactrim, with your numbers you have to take all illnesses (particularly fevers) seriously. A CD4 count <100 means you are open to a whole range of opportunistic infections.


Offline numbersguy82

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Re: POZ as of 8/11/10
« Reply #38 on: September 04, 2010, 11:40:23 am »
I'm a little loathe to give you any medical advice but I can tell you what I did in the same situation.  Once I realize I was having a bad reaction to the Bactrim I stopped taking it.

NOTICE:  Bactrim is a prophylaxis for PCP so if you stop taking it there is always the chance you could develop PCP.

However, since you hadn't gotten PCP before and this is only a 3 day window we're talking about here then I think you'll be fine.  Just weigh out your options if the Bactrim is making you feel as bad as it made me feel then I was more than fine with taking my chances without it.

What reactions did the Bactrim cause with you???
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Offline Hellraiser

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Re: POZ as of 8/11/10
« Reply #39 on: September 06, 2010, 12:08:58 am »
Fevers and rash, enough to knock me on my ass.

Offline WillyWump

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Re: POZ as of 8/11/10
« Reply #40 on: September 06, 2010, 08:46:07 am »
Hey Numbers,

Just wondering how you are doing? Did you stop the BActrim or did things iron out?

Let us know

-Will
POZ since '08

Last Labs-
11-6-14 CD4- 871, UD
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
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Offline jkinatl2

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Re: POZ as of 8/11/10
« Reply #41 on: September 06, 2010, 11:49:51 am »
Some people can be de-sensitized to Bactrim, by starting with tiny doses and gradually building up.

Me, I switched to Dapsone.

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Offline leatherman

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Re: POZ as of 8/11/10
« Reply #42 on: September 06, 2010, 12:43:10 pm »
Some people can be de-sensitized to Bactrim, by starting with tiny doses and gradually building up.
the bactrim dosage can also be lessened or prescribed as every other day.


just because the general dosage is a certain amount doesn't mean that it is the optimal dosage of everyone. some people weigh less, and some people have higher metabolisms. Changing the dosage amount is always a possibility, before dropping or switching a med, that everyone should talk to their doctor about before making a big decision.

for 10 yrs, while my tcells stayed <225 I took a half dose of bactrim MWF and never got PCP again

as bactrim is only a prophylaxis, i would stop the bactrim until I could speak with my doctor and determine a dosage change to rule out totally dropping or changing the med.
leatherman (aka Michael)

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And I think about it all the time
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Offline numbersguy82

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Re: POZ as of 8/11/10
« Reply #43 on: September 06, 2010, 02:40:46 pm »
Hey thanks guys for the info on Bactrim and your experiences with it. I decided on Sunday (Yest) to stop taking my regular dose of Bactrim. I had to only take 2 advils all day (down from about the 20 pills of alternating Tylenol and Advil I had taken the day before). Today I woke up feeling great and a normal temp, the rash is going away, and for the first time I feel like my old self. I know its not preferred to stop a med without a doctor's approval but for me the Bactrim made me want to die. I have never felt so bad in my entire life. I think I'll take JK's advice and try Dapsone. Not how I envisioned my long holiday weekend, but atleast I know what the problem was now. I've only been on Prezista, Truvada, and Norvir for 4 days, and I think I've had no side effects from them. Thanks again for the good info and concerns :)
« Last Edit: September 06, 2010, 05:33:14 pm by numbersguy82 »
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Offline leatherman

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Re: POZ as of 8/11/10
« Reply #44 on: September 06, 2010, 05:53:05 pm »
I know its not preferred to stop a med without a doctor's approval but for me the Bactrim made me want to die
in your case, bactrim has been prescribed as a preventative against PCP, not an actual med that you urgently need. You might not even get PCP if you don't take it; but trust me, PCP is nasty, and you should "avoid" it if possible.  ;) As soon as your cd4s are about 200 for several months/several tests, you'll be able to drop the bactrim anyway cause you'll be out of that "danger zone".
leatherman (aka Michael)

We were standing all alone
You were leaning in to speak to me
Acting like a mover shaker
Dancing to Madonna then you kissed me
And I think about it all the time
- Darren Hayes, "Chained to You"

Offline numbersguy82

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Re: POZ as of 8/11/10
« Reply #45 on: September 06, 2010, 05:59:28 pm »
in your case, bactrim has been prescribed as a preventative against PCP, not an actual med that you urgently need. You might not even get PCP if you don't take it; but trust me, PCP is nasty, and you should "avoid" it if possible.  ;) As soon as your cd4s are about 200 for several months/several tests, you'll be able to drop the bactrim anyway cause you'll be out of that "danger zone".

Good point... if I was unfortunate enough to get PCP will you please refer me back to this thread and show me that at the time the Bactrim sideffects were the worst... and I'd probably think that PCP was way worse!!! I'm calling my Doc ASAP in the morning lol
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Offline leatherman

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Re: POZ as of 8/11/10
« Reply #46 on: September 06, 2010, 06:06:49 pm »
Good point... if I was unfortunate enough to get PCP will you please refer me back to this thread and show me that at the time the Bactrim sideffects were the worst... and I'd probably think that PCP was way worse!!! I'm calling my Doc ASAP in the morning lol
during the time it took to switch me to half doses and then to every other day (about 6-8 wks), my skin was nearly red as a ripe tomato and I itched like hell night and day. Even later on, at that low dosage, I still always had a little itch going; and though I still continued to lie out by my pool that summer, the least little bit of sun every day turned me all red and blistery again. But itching was something I could take in stride compared to lying in a hospital, hardly able to gasp for breath, with doctors telling me that they had done all they could and my family ought to come quickly. ;) Itching was way preferable over dying.

definitely call the doc tomorrow to ask about the alternatives of adjusting dosage or switching to something different. Good luck, and I am glad to hear that you are feeling better than a few days ago.
leatherman (aka Michael)

We were standing all alone
You were leaning in to speak to me
Acting like a mover shaker
Dancing to Madonna then you kissed me
And I think about it all the time
- Darren Hayes, "Chained to You"

Offline WillyWump

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Re: POZ as of 8/11/10
« Reply #47 on: September 06, 2010, 07:26:56 pm »
I've only been on Prezista, Truvada, and Norvir for 4 days, and I think I've had no side effects from them.

Prez/Tru/Norvir is an awesome Regimin, Ive been on it for some time and ahve zero side effects and good response in my numbers. I think you will do very well on this.

-Will
POZ since '08

Last Labs-
11-6-14 CD4- 871, UD
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 littleprince

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Re: POZ as of 8/11/10
« Reply #48 on: September 07, 2010, 03:18:41 am »
Quote
Good point... if I was unfortunate enough to get PCP will you please refer me back to this thread and show me that at the time the Bactrim sideffects were the worst... and I'd probably think that PCP was way worse!!! I'm calling my Doc ASAP in the morning lol


The PCP would be worse. Just make sure that you find a med that you can take to prevent it. I was 5 weeks in hospital and a few days in intensive care with PCP. 3 months on and I still have a cough and am not back to full energy.

you should also be put on a few other meds. Without bactrim you'll need something else for PCP and then something for toxoplasmosis (Bactrim usually covers both).

I guess you're on fluconazole for thrush. I didn't have thrush but take it as a prophylaxis (200mg/ day).


 


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