POZ Community Forums
Main Forums => I Just Tested Poz => Topic started by: 1228GUY on January 10, 2010, 04:21:10 pm
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I have been reading the posts in the different boards on this website. They have provided some comfort and information. Just diagnosed 2 weeks ago, still don't have T-cell/C-4 - / Viral Load #'s, have an appt on 1.19 so approx 3 weeks after that appt, I should have some numbers.... Just wanted to come in and introduce myself since I'm in here quite often, but just registered.....
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Welcome 1228guy -- Sorry to hear that you've tested positive but glad that you've found these forums. You'll find a lot of support and information here. If you're comfortable doing so, please tell us a little bit about yourself. Where are you from? How'd you find out you were poz?
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hi guy,
welcome aboard the forums. were you elisa & wb confirmed?
it's good that you've spent some time here on the forums already. i'm hoping that they have provided you some insight on how to tackle your recent diagnosis. it sounds like you're already prepped with all of your lab appts & all. that is really important. in the meantime, educate yourself as much as you can, read & ask questions.
max
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29 year old male here, and it was brought to my attention that I should get tested, my elisa and wb were confirmed as positive. Im sure that as most of everyone newly diagnosed and not educated enough on HIV, I am so concerned about privacy and anything that might give away clues, I doubt anyone is lurking out here trying to fit the puzzle pieces together to find out who is the individual posting but as you can see, it crosses my mind. I am sure that once I start feeling more at peace with being HIV Positive, it will change. All of this being so new, I do not know what to expect. Making some calls tomorrow to get set up with some PCP appointments...
One of my concerns is that I may not be dealing with this in an appropriate way, but then again, I havent seen a guide on how to deal with this emotionally. I am concerned that since I have not dealt with this on an emotional level, it will hit me eventually... I did cry when I got the news, as prepared as I was for it, and knowing that odds were I would test positive, I dont think ANYONE can really prepare themselves to say, ok I'm positive, what next? and not deal with some emotions...
I am at the point of just finding out and trying to deal with as much as I can, gotten myself a book on how to live with HIV written by a Patient/Expert, day by day chapters and by week 2 it gets a bit scary talking about 30 % of people diagnosed progress to AIDS so then I had to put it down for a bit. I believe I have been positive for a year now, putting the pieces together and trying to recollect the worse flu I ever had.... I really appreciate the positive feedback EVERYONE here has to give, and look fwd to connecting with people and educating myself and others on the topic!!!
God Bless
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The AIDSmeds lessons for the freshly minted poz bod (http://www.poz.com/newlydiagnosed/) can be helpful.
Also welcome, sorry you're here but glad you found us etc.
MtD
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Hi Guy,
Gradually you're going to know whatever you need to do to protect your health. Most important is having a good doctor with whom you can develop a partnership to keep you well. That includes having your numbers monitored regularly and more.
As Matty has suggested you will likely find some good basic information in the lessons including the one about disclosure to people in your life.
You're always welcome here to discuss anything on your mind and to just hang out. You'll find support and information from experienced people here.
Welcome.
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Sorry to hear you are poz but want you to know that you'll find the people and info here very helpful. There is a lot to learn. Take it slow. Be a bit careful reading too much on the web that is old as the science and the meds are changing rapidly.
I was diagnosed in June and started meds in September. With great support from my partner I find that my life now is nearly normal....you can get there too.
Come back here for any questions or needs you have and good luck with your upcoming tests. Keep us posted on your progress.
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I'm sorry to hear your news. Crying is good so don't ever be afraid to do it. I was diagnosed in Nov 05 with relatively stable counts since and just recently started meds this week not because I was ill or my counts too low but because the recommendations to start treatment sooner rather than later recently came out. Over the past 4 years i've been healthy and never felt like I was HIV+ and basically ignored the fact that I was mentally and emotionally. Now that I've started meds I've been struggling with having to accept that, yeah, I really am poz and now I will be taking a pill every day to help remind me of it. It's sort of like that saying about the elephant in the room....I would strongly urge you not to ignore your status and the feelings and emotions that it brings. I never told anyone, anyone for years until just recently. I felt so isolated. Learn about your disease, its treatment options, reach out to close friends,people you feel close to and trust, this POZ site, get into help groups, POZ mentor. In knowledge and acceptance comes strength. I've realized something like this is easier to live with if you can share what you're going thru with someone. Having some support no matter how little is so important and I think talking with other people who are in our same predicament makes you feel like you are not alone or the only one. Don't be afraid to reach out.
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sorryto hear about your diagnoses,however reaching out in this forum is a great step.I was recently diagnosed poz. the end of sept 2009 recently started meds what i can tell you from my experience so far is that in 3 1/2 months ive gone through a lot of emotions and have kinda leveled out now for the best, i feel great with the meds.(actually better than i have for a while) and am just moving on doing everything i need to so i can stay healthy dr. appts are important i started with 3 and have settled on 2 of them, and just ask poeple here any questions that i have and i recieved a lot of great advice and more importantly EXPERIENCE in here a lot of these poelpe will help guide you thru the begining steps here. stay well luckyone.
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I'm sorry to hear about your diagnosis. However, it is good you caught it early. I think the % you read about progressing to AIDS is based on most people don't know they have HIV until it has progressed to AIDS. I was sure I had it for years but was too afraid to get tested. I'm so glad that I didn't pass it to anyone and that I caught it before my immune system was shot.
I have been dealing with a lot of depression over the year I've known. I was just talking about this in a post. I've been feeling very run-down lately. I'm trying to decide whether these physical symptoms are just a manifestation of depression. So, I'd watch out for that as I'm trying to do now. People on this site have been great. If it is all in my head, they've listened and given advice.
Like others said, make sure you have a good doc. That is something I'm dealing with now. I have a doc who isn't really an HIV doc. When he didn't know the new treatment guidelines or how low testosterone can be a problem for HIV men, I decided to try to change docs. I've gotten a lot of good info from the docs at thebody.com and Dr. Gallant at John Hopkins HIV Guide. I also read his book entitled, "100 Question and Answers About HIV/AIDS." You can also ask him questions on his site.
It is a strange thing--I offer what advice I have to people as I'm searching for advice from others. I hope you get good news when you get your numbers. Even if they aren't great, I've heard so many stories of people who were down to like 7 T-cells and are back above 500 and doing great. Those stories have been so inspirational and have kept me from going totally insane.
Keep in touch. I was wondering about something-- You said you've been reading posts on this site for a while, but just recently diagnosed. Were you pretty sure you were positive for a while and were searching for answers before the diagnosis? About the privacy issue: as long as you don't use your real name or a screen name you use for other accounts, I think it would be hard for someone to find out you're on this site.
Take care and all the best
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In the midst of these news that are life altering in many diff ways, I have been blessed with support thus far and this website.... I want to thank all who have replied and have offered advice and support.... I had been searching this website the day before I got tested... It was recommended by someone online, and had been reading posts on the diff forums this website has to offer for about 2 weeks prior to registering, but I knew I was positive by then.... My task to find a good doctor is now at hand, will keep you guys posted!!
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Hey there 1228guy -- If you let us know where you live, some people might have recommendations of good doctors for you. Glad to hear that the forums have been helpful for you.
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Thanks guys.... San Diego.... know of any good orgs or support groups??
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Hi 1228 Guy,
I'm very sorry to hear about your recent diagnosis, but welcome to the forum! You've undoubtedly heard this already, but I don't mind saying it again...I know it doesn't feel like it right now, but just know that everything is going to be OK! Here's a couple thoughts I had regarding your questions:
Support groups: Check out a group called Being Alive San Diego www.beingalive.org (http://www.beingalive.org) - they offer a support group for newly diagnosed men called New Beginnings. Give them a call as I know a new group starts up on 21 January. There is also a group called The Life Group LA up in Los Angeles www.thelifegroupla.org (http://www.thelifegroupla.org). They offer a weekend "retreat" for HIV positive folks (it's free) and I just did it in November and it was a TRULY AMAZING life-changing experience!! The Center also has a couple groups you might want to check out.
Doctors: The Owen Clinic at the UCSD Medical Center (in Hillcrest) has several excellent HIV Specialists to choose from (my personal favorite is Dr. Theo Katsivas) and in my experience, the care I get there is better than anywhere I've ever gone before (including pre-HIV). What I particularly like is that not only is Dr. K my HIV doc, but also my primary care physician -- sure makes things easier.
Hang in there, cry as much as you need to, and try not get too stressed out - stress is a major T-cell enemy! Feel free to PM me if you need any other specific info.
Take care,
a fellow San Diegan
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guy,
ok, sounds like you've been properly ordained into the hiv ministry...never an easy thing to accept, despite all the preparation in the world. but...you are ahead of the game by being proactive. just the fact that you've already started delving into self-help is a step in the right direction. yes, you're right...there's no specific guide when it come to the emotions of being positively diagnosed. it's as random and unique as the disease itself in each of us. hence, the importance of counseling by someone experienced in hiv management.
above all, stay focused and let yourself reasonably feel what you feel. the important thing is not to get trapped there. grieve, then pick yourself up by the jockstrap & move on. the best way to survive this thing is a positive outlook, eating healthfully, laughing, getting enough rest, staying productive & learning about the disease and some basic physiology. without a baseline understanding of the body and its organs (including blood), you are guaranteed to get lost in convos with your doc. remember, your doc will be there to facilitate your staying healthy, but it is you that will be responsible for your body at the end of the day. learn it, love it.
hope that the docs & groups that sd recommended work for you. of you ever want to chat about being newly diagnosed, just send me a pm. i found out 8/09.
stay well.
max
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So I finally got numbers but no genotype yet. I was really let down by the CD4 of 172. Didn't think I would have had them lower than 500!!! The VL is only 30,015 so that's good I guess. The Dr. has started me on Bactrim (antibiotic) to prevent O.I's, waiting on genotype to find out what is the best medication to take. Will keep the forum posted when I get those results back and let you know what medications I will start on.
Blessings!
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That CD4 is not bad, trust me it could've been a lot lot worse.
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Yeah, I guess I set myself up for disappointment. Also not being the one to actually make the decision to start meds was an issue I guess ( a mental one) that the decision was made for me with the numbers that came back. Another mental battle that can be won :)
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Yeah, I guess I set myself up for disappointment. Also not being the one to actually make the decision to start meds was an issue I guess ( a mental one) that the decision was made for me with the numbers that came back. Another mental battle that can be won :)
You could choose not to take the meds, but with those numbers I think you made the right choice. It's not so bad bucko. You may find that you feel better once you've been on the meds for a while. I didn't really understand how badly I was feeling until I had been on meds for about 2 weeks and all of a sudden everything didn't ache, I was sleeping properly again, and I had enough energy to go outside of the house.
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Do you know what your CD4% is? As you've probably read, that is a more stable indicator of immune health. CD4 can drop for many reasons. I can tell you my CD4 at diagnosis was 171. I was sick at the time, so that was probably the cause. It did rebound after getting better.
Maybe yours will rebound as well without meds. It would be interesting to see your numbers again before starting meds. Actually, I think it is pretty common to retest the numbers before starting--unless you and doc feel you are just really in danger and need to start ASAP. I suppose you could do the bloodwork before taking the first pill. I'm trying to remember whether you know when you were infected and whether this low number could be due to sero-conversion.
I'm thinking about ya. I know when I was told mine was 171 and figured out what that actually meant, it was devastating news. As a young guy, it made me feel so vulnerable and lose that super-man feeling. I'm so glad you found out now and are doing something about it. I had to take the Bactrim for a few weeks. I'm sure they told ya to drink plenty of water with it. I think we've all heard about people down to Zero T-cells and are doing good/great now.
Love from Louisville---
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I know the percent is 12%. Though I don't what that means. Well I do know exactly what you mean TEDNLOU, but I don't what is being measured by that percentage. I am almost sure I 0-converted in December of 2008. HELLRAISER, it will be great if I do start feeling better!! Just the sleeping alone will be an improvement, and all the skin problems, irritation, itchiness could be due to the immune system being somewhat low. I'm optimistic and I am grateful and do feel blessed I was able to find out and have access to medical care. It's not all bad news.....
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I know the percent is 12%. Though I don't what that means.
Go here (http://www.aidsmeds.com/articles/TCellTest_4727.shtml) and scroll down to "What is the CD4 Percentage?"
Also, when was the last date that you tested negative for HIV?
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Thank you Miss P. That was such a great link and easy to understand.. I've bookmarked it! My last negative test was Feb of 2007.
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If you really want to get technical like from science class, here is a video. It may be too technical. Others may find it interesting. This deals with HIV infection process and how meds work. I saw another that deals with how CD4 cells and others are affected--how they body creates them and HIV keeps trying to kill them. I'm trying to find that video again.
http://www.youtube.com/watch?v=RO8MP3wMvqg
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welcome to the forums and i'm so glad you found your way here....i read and much as i could the first 3 months after I found out I was hiv+....this site will be your angel....continue to read and educate yourself...the more you know...the more your nerves and fears will decrease.....drugs will be a daily reminder....but after some time...it just becomes routine and you will feel so much better mentally and physically once your VL goes undetectable....keep your head up....and remember to be you...you are still the same person you were before 12/28....
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1228guy,
Welcome to the forums. I'm glad you found us. You will meet a variety of folks on here and I commend you for taking the effort to learn. Knowledge is power and the more you learn the better off you are.
I had a sense of urgency when I found out I was poz. What I came to learn is that life with HIV is a long walk. You can rush down the road, but it doesn't get any shorter. It will take some time to adjust. I often joke that HIV is like a pet. A pet you can't get rid of that will act badly if ignored. You will find out which friends are solid and which are less solid.
For me, my priorities shifted. I realied how important each day was and try to put an emphasis on enjoying each day. Each of us has a bit different journey and don't hesitate to ask if you need insight from folks on the site.
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Thanks TNL, that was a really good video, a bit too much mechanical but it was interesting!
Tag Man - HotPup thanks for the kind words. Everyday is def new here. Diet is tough! I love all the fast food but obviously not good for me to eat anymore! Boo Hoo Sniff Sniff :-X
So I started taking Bactrim last night and I broke into hives on my shoulders and on my chest. I have to go to the clinic today so I will mention it and see what they make of it. Can anyone that has personally taken Bactrim share if they had any serious side effects? Like most, I read all of the side effects and am mortified by the serious side effects like Steven Johnson Syndrome! Ouch! I know I know, I get worried too much but I've never seriously taken any pills on a daily basis other than the antidepressants and even that was a bit of a mental challenge to overcome, the whole taking a pill to "fix myself"
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Can anyone that has personally taken Bactrim share if they had any serious side effects?
Hives are a sign of an allergic reaction to sulfamethoxazole or trimethoprim in the medication. How bad is it so far? You may need to call you doctor. They'll take you off of it and put you on something else. I had a reaction to it back in 1994 but it was after I'd been on it for about a year. Mine was persistent low grade fevers ~100.
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you can still eat everything you did before.....just continue to exercise....fast food doesnt make hiv stronger.....you are in a learning phase right now....we are here to help you and if you have any questions....just ask...you can always IM me if you want as well....its nice to have some good mentors when you are first starting out....if you dont have someone close by....get one from this site...its nice to talk to someone either on the phone or in person if possible....you are gonna be on a roller coaster of emotions the next 6 months....remember to be strong...and come to this site when you need us...
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The outbreak was not that bad, though bad enough to where it was uncomfortable. The outbreak started on my shoulder and moved down to my chest. I did talk to the dr at the clinic today and they will take me off Bactrim and possibly go on Mepron (atovaquone) or Dapsone, I'll see what is covered by Ryan White. I know that Mepron is highly expensive. Thanks for reaching out TagMan and offering to be privately messaged.
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Sorry for the video...lol. It is educational, but like being back in highschool science class. Learning about HIV has reduced many of my fears--well, until I read something bad. I think a person can get an over-load of info when first diagnosed.
I'm sorry to hear you had a bad reaction to Bactrim. After reading your posts, I've been thinking I'd like to see a documentary about people living with HIV---following them from diagnosis to learning to deal with having the virus and all that comes with it. It would be helpful to so many to learn how to deal with it first, but then navigating through finding a doc, paying for it, effects of meds, sex with HIV, etc.
If anyone knows of a documentary like this, please let us know. If not, maybe we should contact HBO about doing one. I remember seeing one on HBO a couple years back; however, that was about a girl dealing with her father dying of AIDS. I think it was actually an old video from early 90's. I haven't found one that is as in-depth as I described.
Anyway, I hope the change of med goes well for ya. I'm sure it will.
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The outbreak was not that bad, though bad enough to where it was uncomfortable. The outbreak started on my shoulder and moved down to my chest. I did talk to the dr at the clinic today and they will take me off Bactrim and possibly go on Mepron (atovaquone) or Dapsone, I'll see what is covered by Ryan White. I know that Mepron is highly expensive. Thanks for reaching out TagMan and offering to be privately messaged.
I'm on Mepron and it is insanely expensive. The company that produces it will assist you in paying for it (I think there is a $10 copay initially) a 30 day supply of Mepron is something like $6000.00. They will probably know about the pharmaceutical company's assistance program however.