POZ Community Forums
Main Forums => I Just Tested Poz => Topic started by: beefbud on April 07, 2007, 11:07:28 am
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Hi everyone,
Have had my first set of bloodwork done VL was 18000 CD4 270
Had my first HIV doc visit this past Thursday and I think I am very lucky in the respect that my GP referred me to her specifically as we have a very good rapport with each other.
OK, well I have been doing a lot of reading on the internets...sometimes a good thing sometimes a bad thing as I tend to overanalyze way too much for my own good. I read a lot about the counts and not to go on 1 count but at least 2 to get a good indicator of what to do next and was happy when that was immediately brought up by the doc before I had a chance to even get to it. Unless there is a significant jump in the CD4 we are most likely going to start therapy. I am OK with this.
Their are a few issues I am dealing with health wise that I brought up. Swollen node on the back of neck...to me it feels huge, to her she was not concerned and said, "yes, its swollen a bit you're body is fighting the virus and its normal at this point." Secondly I have a rash that both my GP and my HIV doc have looked at, small red/pinkish dots (all other STD's came back neg) all over. I did have Strep and they was on 2 consecutive Packs and they are thinking that is a reaction to the meds but was also told it could possibly be the HIV and my body fighting. Has anyone else had this, it doesn't itch (cept on my scalp) and it is really more pronounced when I heat up (after a workout, after a hot shower etc...)
Once again, no one seems concerned but for me its a vanity issue (sorry we all have self image still) and its all I see..
OK i have rambled enough and you may have noticed a bit incoherency in some statements as its difficult to remain focused with my mind racing as it is right now.
I look forward to hearing from and possibly getting to know some people here and also look forward to being able to take control of my life again as right now I feel so out of control.
Thank you for reading.
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Hi Beef :)
A warm welcome to the forums. You have been reading a lot, it seems, and things can be a little bit overwhelming at the beginning, but feel free to ask as many questions as you need. Your doctor seems to take a reasonable approach by waiting for the next count and go for meds if needed.
Do you know when you were infected?
Did you test negative for syphilis? I had exactly the same rash and symptoms you describe, not itchy on the skin, but itchy on the scalp especially after heating up. They lasted for about a month and slowly disappeared after a penicillin shot.
Milker.
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Hello BeefBud,
First, I would like to welcome you to the forum. You have come to the right place for information and support in dealing with your recent diagnosis. Secondly, I must tell you that you are not out of control. You are just dealing with this new chapter in your life and soon it will be an afterthought and you will spend less time focusing on it. Just remember to do what your doctor's tell you, get plenty of rest and some form of exercise and eat a balanced meal and you will be just fine. Next, You will notice that your numbers will bounce all over the place. It is true that you should not rely on one set of numbers to determine whether or not to begin therapy. As you will notice in my signature line - most of my numbers have not been consistant and they have been bounced around all over the place. My ID doctor tells me that looking at all of my numbers since I was diagnosed in August 2006 - My number are on an upward trend. My point is, don't spend a lot of wasted energy focusing on your numbers becasue they will go up and down. Also, you mentioned that you have a rash. It seems that I keep some sort of rash, but I noticed that if I take a hot shower or bath or work in the yard and get sweaty my rash appear to itch more. I think rashes are very common in HIV positive people, but that's just the virus way of letting us know that he is still around. As your doctor pointed out - it may also be a reaction from your body trying to fight the virus. My advice to you is take a deep breath, because you are not going anywhere. Learn as much as you can about the virus and how it replicates. Keep yourself surrounded by positive thinking people and plan to live a long an healthy life. My doctor think I may have had my virus for more than 10 years without even knowing it. I went to see my Gastroenterologist for a problem I was having and he advised me to take a HIV Test because I had discussed my lifestyle with him. The results came back positive and here I am. The last time I was tested was in 1995 and that test came back negative. Currently, I am not on medications, but I have had a bout with the shingles which we think may have been caused by stress. All I am saying is keep your head up because you have nothing to be ashamed of. You are still the same person that you have always been. Last but not least, be very careful who you reveal your status to. Take some time and get use to the fact that you are hiv positive. Some people you might tell may go and tell someone else and the next thing you know the cat has been let out of the bag. Disclosing is something that must be handled very delicately. If you would like to talk then feel free to send me a private message.
I wish you nothing but continued good health and be Blessed.
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Hi again and thank you for the welcome!
Unfortunately we don't have a definite conclusion as to infection date but our guess is somewhere within the past 6 months but I honestly don't know could be much longer. She looked at the rash and then proceeded to check my palms and the soles of my feet (normally an indicator of syphilis) as she was checking I mentioned, "syphilis test came back negative" (my tests are available to me online)
Everything checked OK as far as other STD's.
Got my secondary CD4 count a bit ago and it has climbed a bit to 294 from 270 (not huge but I was happy to see it go up rather than down.)
She is going to give me a call on Tuesday to talk a bit more and check on things and i have another appointment in 2 weeks which I am expecting to start treatment. (They are doing all the resistant testing and about 12 more vials worth of blood to find out other things) she had me read up on Atripla as that is what she is looking into if not resistant.
I am very lucky to have a loving partner by my side through all this and he says he really doesn't see the rash unless I point it out...of course all I see is the rash. I think my headspace is turning back around slowly, I want to take my life back but I am not blind to the fact that this is in for the long haul. The general lack of urgency (and im not saying that negatively) put me a bit at ease but I still don't feel 100% me.
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Beef ... welcome.
Overanalyzing is a self defense mechanism many of us have. It's quite effective, in fact, at measuring out little bits of emotion into manageable chunks over time. However, you can end up driving yourself crazy with worry over the little things.
Far be it from me, a guy covered with tattoos, to tell you not to worry about the rash from a vanity point of view. Just know that your body is going through a lot right now, and so is your head. There are a lot of sources for this rash. So, analyze it, ask about it, but be honest... are you worrying yourself to death and exacerbating the problem.
Best of luck to you... and when the emotions of being hiv+ get to be a little bit too much, remember that it is ok to feel them, express them, and use this place as a venue for getting it out.
Warmest welcomes,
Scott
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hello, beef. first of all, welcome!
but i feel a little bit sad. why there are more and more people had been infected everyday????
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hello, beef. first of all, welcome!
but i feel a little bit sad. why there are more and more people had been infected everyday????
I can speak for no one but myself and my answer is stupidity.
I plan on putting everything into writing once I get to the point that I can properly compose all the thoughts. There is so much education out there but sometimes we need to hear something that "hits home" to really make it stick. I hope that what I can hopefully express to others may touch some and educate them to make the stupid decisions that I made.
Briefly low self image stemming from being a fat kid and being teased carried over into adulthood. Show me attention and affection and I'm putty in your hands. (this is a very condensed version but as Tears for Fears sang, "memories fade but the scars still linger...")
Fear....I was too afraid to seek and educate myself as I was afraid to know and might read something that I didn't want to know. Ignorance is bliss, right? That fear eventually consumed my every waking moment, I couldn't function...i cried every morning in my partners arms and he kept telling me, "you need to get tested for your peace of mind, whatever the outcome we will handle it when its necessary." Well, we know that outcome and are dealing with it. I am in my education phase now and I kick myself for being so afraid to learn what I know now.
I am not mad at anyone for giving me HIV, I gave it to myself through unsafe practices.
Anyway, today is a new day. Its another day to live and enjoy my partner and my friends. Fear is not part of the equation anymore really, uncertainty is...maybe this is a good thing as i can procrastinate and its been a kick in the ass to not wait til tomorrow and this is not only because of HIV but because nothing is guaranteed for anyone regardless of their status.
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"I hope that what I can hopefully express to others may touch some and educate them to make the stupid decisions that I made."
sorry, this was supposed to read to NOT make the stupid decisions I made.
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hi beef, welcome to the forum. i hope you know your numbers are really not bad. since you seem to know how to get around the net please take your time deciding about the meds. i had it easy, when i became positive there were none. it was over a year before AZT even became available. i ended up going 15 years before taking meds. now that i have been on meds for 8 years i am so happy i had that much time to wait. although the commitment will always be yours you have much time to look around at the discussion board before deciding. we are just now getting research that starting meds early does not seem to make a difference. so please take a few months at least to get used to this new phase of your life. and since your sure your vanity is so high (probably not 10% of mine) read the sections on lipodystrophy. as far as the skin problem goes it sounds to simple to ask but have you been referred to a dermatologist? the two i go to always seem to be able to see what the other doctors just aren't aware of. it really seems to be an area of medicine where experience counts a lot. but please take the time you need for yourself. and if you have any specific questions just PM me and i'll answer as direct as i can. mark
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Hiya, Beef!
Welcome to the forums. I am also in Georgia, so if there is any help or info you might want for our area, PM me.
As for the rash...are you taking antibiotics? Bactrim? That might do it.
T Hunter
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Not on any antibiotics at the moment...have a call into the doc as this rash is not getting any better in fact it seems to be spreading more :(
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Yup beef you need to see the doctor. It's easy to forget the rash if it's not itchy, and just get reminded when you're naked. Better take care of it now before it spreads all over your body, you don't want to look like a christmas tree in the middle of summer :)
Milker.
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oops too late its already Merry Fucking Christmas ;)
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well beef, you found a little humor in this. stick around the forum and you'll find it in most every little issue.
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Hey Beef
Welcome to the forums, although I'm sorry to see you here as well. I hope you find as much information and support here as I have.
I had a rash like you for a while after seroconverting, so maybe it's just hanging around a bit longer? I hope you see a dermatologist and get an answer - just for reassurances sake. I also found my scalp is a lot more sensitive since my diagnosis - have a look at the shampoo/conditioner you are using because it maybe that that is irritating the rash up there.
I can totally relate to the lymph nodes - I had golf balls in my groin, armpits, and the back of my head and neck. They've gotten a little smaller but are actually a good sign that your body has recognised the HIV as bad and is fighting it.
Also like you I am totally over-analytical. And it hasn't helped me at all. The first thing I did when I was diagnosed was to see what I could no longer do career-wise (I'm training to be a doctor) and look at Kaplan-Meier (survival) curves. The first thing I did need to do, but could have waited. The second is pointless as HIV medicine jumps forward. I hope you give yourself some emotional space to cry or whatever.
Anyway, congratulations on a loving partner, and having had the balls to test for HIV. It's not easy - and you've caught it at a good stage for intervention as a result.
All the best,
Matt.
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Hey Matt and thank you,
I had brief email consult with the doc and we covered a few things. The rash could possibly be from the Strep infection I had and why I was taking the Z pack. I asked if its possible that the syphilis test that came back negative could possibly be wrong, she explained to me that the test they use for that is VERY specific and extremely rare that it wouldn't find it if it were there, she said I could retest but its pointless unless I have had any kind of risky behavior since that first test which was about 2 weeks ago....I havent had any sex in 2 months so I figure its pointless to stick another friggin needle in my arm right now. She is still under the assumption that its a reaction to the zpack and it may take a few weeks for it to completely rid itself out of my system.
I broke down this morning, I can't lie.
I look in the mirror and see a disease, I worry about people looking at me and think they see a disease. I don't want to do anything but am gradually starting to force myself. I am relatively fit guy, gym 5 days a week (havent been in a month) I AM GOING BACK TOMORROW!
I allow myself to cry but I think its time to find others in the area to talk with face to face. I got so mad at myself for making the stupid mistake that got me here...this may or may not pass but I want to move forward.
The end of this month I am heading to Indio CA (just outside of Palm Springs) for the Coachella music festival....(music is my life, I obsess over it) 3 days in the desert with over 100 bands and my best bud, who knows whats going on, soaking in some sun and enjoying some awesome music! I think its a desperately needed pick me up right now.
Thanks to you all for listening and relating to whats going on....it is really helpful to me more than you know.
Take Care
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Totally relate!
After I was diagnosed I lost interest in sex for a couple of months, as you've mentioned in another thread. Don't worry, it comes back.
Give yourself plenty of space to cry, rage, whatever really. I tried holding it in for a while and it just started eating me up from the inside. It's going to come out sooner or later.
Nobody can tell you are HIV positive. Because it's massive in your mind, you assume it's present in other peoples'. I remember walking into a gay bar for the first time about 2 months post-diagnosis and was astonished people couldn't just tell by looking at me. But they couldn't.
If you get back into the gym today you're doing better than me! I still don't have any interest in it, 15 months after diagnosis. I guess it'll come back when it comes back.
Good luck hanging out with other pozzies. It definately helped me - they say that getting HIV is the fastest, easiest way to quadruple your social life! And enjoy that music festival. Wish I could go to California right now!
M.
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Hi, i am also newly diagnosed... i know many people have told you lot of suggestions to manage this, and i think they are all very valuable. I just would like to share one more thing that has helped me since i got to know.. a month ago. To visit psychologist (counsellor).
I never liked them, in my whole life i went to visit one just once. Although with this... i knew i needed help. Which is normal, your body changes, your mood changes... and help is needed, there is nothing bad in that, currently i am visiting psychologist with my mother, it has been a big help. I have learnt not to fear the illness that much and to live. All other things can be solved with medicines, but the time you waste fearing, is not going to come back and sometimes a psychologist help you out to get the most of what you have right now.
I hope that can give you a hand, i have been same like you, i have cried, suffered imsomnia, fear, paranoic, but sometimes a friendly hand... just gives us the strenght to go forward. It's up to you, but think about it. Big hugs, Xyahka