POZ Community Forums
Main Forums => I Just Tested Poz => Topic started by: kev72 on March 13, 2010, 04:10:20 pm
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Hi folks,
I have been reading the forums and find them very helpful. Thanks! To introduce myself, my name is Kev, I am 38 years old and got confirmation I was poz this past week. Just to give some background, I thought I had played it safe all of these years, and never imagined that I could be poz. How foolish, as once I started reading all of the information on HIV, boy did I learn alot about the virus and how critical it is to get tested if your lifestyle puts you at risk regardless of having symptoms or not.
Just some background. I felt great until last July when I started to feel depressed and loss of energy. I had always dealt with anxiety and thought it could be attributed to that or the fact that I had stopped exercising after always being very active. My doctor gave me some anxiety meds, but nothing helped. Even ones I had taken before with success. I then went to several specialists. Everything was fine. I had bloodwork done, and everything was great except my Lymphocytes were 1 point lower then labs normal range. My doctor assured me that I was fine and it was just stress causing my symptoms. Anyway, I developed mild thrush and freaked. I researched every website, every HIV symptom, and after reading how critical timing is, I decided to get tested. I found a great team of ID doctors and went for an appt. I waited 3 weeks for the tests to come back and as I expected, I was poz. The worst part is my CD4 is only 11. Whats worse, is I also tested poz for Hep-B. I prepared myself for the fact of being poz, but never to be this advanced. I look forward to using this site. Its great reference.
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Hey Kev,
Welcome to the Forums. I'm sorry you're joining us but I'm glad you found us all the same.
Bummer about you feeling so ill. A CD4 count of 11 is not good, but advances in treatment mean that can most likely be turned around in short order.
The Hepatitis B thing makes this a double bummer, but even there things may not be as bleak as they seem. Did your doctor give you any specific information about your HBV (Hepatitis B Virus) results? It could be that you were exposed but the infection has passed and now you're immune. Also a number of medications which work against HIV also work against HBV.
Once again, welcome!
MtD
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Kev, I was infected at the age of 36, and given six months to live. The doctor has since died who said that, so beware of doctors playing God.
Well, you are just chock full of good news aren’t you? Gee, welcome to the forums, and I trust you will find everything you need here. I would suggest you read all the lessons in the “All About HIV” section, in the button above. This will help you a whole lot, and will prepare you for any OIs that you might encounter, while you wait for your CD4 to rebound after you start meds.
I wanted to give you a few pointers that might help you stay healthier as this comes about. Please make sure you switch to purified, or distilled water, and when you cook pasta, or whatever, use the tap water as this supplies you with the necessary minerals that come in the municipal water system. Also, I carried purified water with me for about three years while my CD4 was rebuilding from 20, in the early nineties. When you go to a restaurant, make sure you ask for a glass without any ice in it, as the ice in most places is made from the tap. I am not trying to shock you here, but most water systems have a bit of cryptosporidium in them as it is only killed with ammonia, not a good additive to water systems.
Wash all your greens with a bowl of water with a tablespoon of bleach in it, and then rinse with the distilled water. Mostly anything you bring home from the produce section should be washed with antibacterial soap, BEFORE you start peeling, as the germs on the outside of our fruit and produce are a true zoo of microscopic shit we don’t need to ingest. Bananas are for example, loaded with fecal bacteria as most of the tropical farms use human waste for fertilizer. Works wonders for the fruit, but not for us.
Sleep is super important, as your immune system is very damaged at this time and most of us have to get at least 8 hours to keep up with daily life. Don’t worry about “normal” just yet; you really need to focus on getting things back in order. I trust your team is really focused on getting you medicated sooner than later, so you can start to rebuild.
Don’t have any more things to share right now, but you’ve arrived in a good place here, so welcome, and join the crowd. I’m now celebrating my 27th year, and I have to tell you, it has been an exciting, traumatizing, growing, adventurous and stunning 27 years that I am forever grateful for. So many of my friends didn’t make it, but I am still here, still sharing, so all is good.
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Welcome to forums Kev
Sounds like you found out pretty late, but at least so far you have avoided most of the opportunistic illnesses that can cause the most injury. Still, if you have a CD4 count of 11 you need to take steps to protect yourself and quickly.
First, you should be on a strong antibiotic to prevent getting PCP pneumonia. This is one of the biggest dangers of AIDS, and basically if your CD4 count is under 200 you should be on drugs to protect against it. Usually people are put on Bactrim. You should see a doctor this week if you are not already on Bactrim or a similar drug. PCP can put a real dent in your life and health.
Second, have you found the lessons here? I see Moffie point you to them while I was typing Here's a link just in case you have any trouble finding them. http://www.aidsmeds.com/articles/Introduction_4702.shtml They are very helpful and many of us refer back to them for info on drugs and treatments all the time.
Hope to hear more from you over time. There's a lot to take in at first, but eventually it all settles down.
A
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Wow guys, thanks for the quick welcome as well as the information. At this point, I want to follow every bit of advice so I can make as quick of a recovery as possible. I feel relitively well except for the anxiety of worrying about every ach and pain, but I am sure this will pass in time. My doctor is waiting for my VL, and next week wants to place me on Atrilba (spelling) I seem to racall the doc telling me that the Hep-B results were strange and contradicted eachother, but I was in a fog and did not understand. I am hoping next week he can go into further detail. He placed me on Bactrim and Zith. I again thank you for your responses. It great to be able to talk to others about this. Kev
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Wow guys, thanks for the quick welcome as well as the information. At this point, I want to follow every bit of advice so I can make as quick of a recovery as possible. I feel relitively well except for the anxiety of worrying about every ach and pain, but I am sure this will pass in time. My doctor is waiting for my VL, and next week wants to place me on Atrilba (spelling) I seem to racall the doc telling me that the Hep-B results were strange and contradicted eachother, but I was in a fog and did not understand. I am hoping next week he can go into further detail. He placed me on Bactrim and Zith. I again thank you for your responses. It great to be able to talk to others about this. Kev
Atripla, Zithromax and Bactrim sound like an excellent mix for you. :) Atripla is potent stuff and produces excellent viral suppression. It can cause some side effects such as light-headedness and vivid dreams but these usually pass in a couple of weeks.
Bactrim and Zithromax will protect you against things like PCP and MAC infection.
You should ask your doctor to explain exactly what's going on with the HBV situation. HIV/HBV co-infection can be a nasty complicated business so it's advisable to get the straight poop on that as soon as you can. HBV blood testing is more complex than HIV antibody testing and so that may be what your doctor is talking about.
MtD
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Kev don't get worked up over an initially low CD4, you seem to be pretty okay with everything so that's step one. Like you I had extreme energy loss and mild thrush with a very low CD4 of 15, but 6 months down the road I'm doing much better. The Atripla really seems to be working miracles. Just make sure to take it every time, don't miss any doses. I'm not sure about that Hep B result I was under the impression that with a very low CD4 number you couldn't reliably test for Hep B antibodies or immunity. This may be what your doctor was talking about. Anyway, glad to have you here, but sorry to have you join us. Have a good weekend!
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Welcome!
In regards to the Hep B - it is important to find out if it was acute or chronic. I had Hep A in 2001 and docs believe Hep B contracted in 2003 (found out in a pre-employment physical -- I had no symptoms) at that tiime they said I was immunie and it was acute. Then almost 5 years later they said that they might have misread it - I don't know how - and thought it might be chronic. After some more testing they concluded it was acute and that I had antibodies and was over it. So, it is important to get a clear, deinite answer.
Welcome again!!!
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Sorry that you had to have such a diagnosis.
Why did you expect to hear that you were poz. Your post seems to contradict itself. You never thought to be HIV+ and even all your doctors didn't suspect so why did you expect to be HIV+?
Second - a positive test for HEP B doesn't mean much. Could have been a long ago contact that you successfully fought off. Also perhaps you were vaccinated for Hep B. I was vaccinated for HEp B and have both the antigens - for the vaccine and for the "real virus". The doctor says that means I had contact with Hep B after my vaccine and never noticed.
Good luck with HAART - tri-therapy, I hope you see comforting results soon.
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Sorry that you had to have such a diagnosis.
Why did you expect to hear that you were poz. Your post seems to contradict itself. You never thought to be HIV+ and even all your doctors didn't suspect so why did you expect to be HIV+?
Hi, thanks for responding. Just to clarify, I initially did not think I could have been exposed to HIV because I have been in an exclusive relationship for 12 years and my partner is neg, and I am not a bottom, but once I developed Thrush and with all the reading and research, I realized how foolish I was to not knowing it takes years to have symptoms. Once I learned how the virus progresses it hit me that I could have it. So I resigned myself to it while I waited for the results perhaps as a coping mechenism I hope that makes sense.
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Hi Kev,
It's not unusual for people to be HIV positive for more than 12 years and have no idea they're infected, so your situation is not unusual.
MtD
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I would like to hear from others who are taking Atripla...Would like to hear all thoughts on it..good/ bad..
Also does anyone know what APO SULFATRIM is prescribed for?..
I was diagnosed poz last Jan (2009)..my doc is good, but seems very casual about HIV (he specializes in this area)...he wanted me on meds about a year ago..and I was like..no , let's just wait and see..a month ago he prescribed me what I mentioned above..the Atripla I still have not touched...I live in Montreal, near the gay village..I have seen many HIV guys walking around like walking zombies and looking like they are the living dead..I hate what certain medications do to guys..It is unforgiving..
I know guys who have gone off of meds at they say they can't deal with how they feel..others say, they feel amazing..I take care of myself..don't smoke..drink...get my rest..try to eat well....have not even had sex in about 2 years as I don't want any bacteria from others invading my system (if this makes any sense..I stopped having sex before I knew I was poz..as believe it or not, I got bored of men and sex...still do lots of stroking though ;-)....
I have heard the Atripla is a good med..but I am still not convinced..of course, when it all comes down to it, and someone poses the question..do you want to live or die? hell yeah, we all want to live..but I am still uncertain about the meds..what they do to you in the long run...will they mess up my liver...will the fat from my face start deteriorating (my doc says if that happens, it can't be changed)..
Part of me is like take the meds..but my inner voice keeps saying give it time..but maybe there is no time..i have not lost any weight as of yet...still have a good appetite...i keep physically active and push myself to limits to see how much i can do...
i want any and all opinions
thanks for your time..
Kev don't get worked up over an initially low CD4, you seem to be pretty okay with everything so that's step one. Like you I had extreme energy loss and mild thrush with a very low CD4 of 15, but 6 months down the road I'm doing much better. The Atripla really seems to be working miracles. Just make sure to take it every time, don't miss any doses. I'm not sure about that Hep B result I was under the impression that with a very low CD4 number you couldn't reliably test for Hep B antibodies or immunity. This may be what your doctor was talking about. Anyway, glad to have you here, but sorry to have you join us. Have a good weekend!
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I would like to hear from others who are taking Atripla...Would like to hear all thoughts on it..good/ bad..
Also does anyone know what APO SULFATRIM is prescribed for?..
I was diagnosed poz last Jan (2009)..my doc is good, but seems very casual about HIV (he specializes in this area)...he wanted me on meds about a year ago..and I was like..no , let's just wait and see..a month ago he prescribed me what I mentioned above..the Atripla I still have not touched...I live in Montreal, near the gay village..I have seen many HIV guys walking around like walking zombies and looking like they are the living dead..I hate what certain medications do to guys..It is unforgiving..
I know guys who have gone off of meds at they say they can't deal with how they feel..others say, they feel amazing..I take care of myself..don't smoke..drink...get my rest..try to eat well....have not even had sex in about 2 years as I don't want any bacteria from others invading my system (if this makes any sense..I stopped having sex before I knew I was poz..as believe it or not, I got bored of men and sex...still do lots of stroking though ;-)....
I have heard the Atripla is a good med..but I am still not convinced..of course, when it all comes down to it, and someone poses the question..do you want to live or die? hell yeah, we all want to live..but I am still uncertain about the meds..what they do to you in the long run...will they mess up my liver...will the fat from my face start deteriorating (my doc says if that happens, it can't be changed)..
Part of me is like take the meds..but my inner voice keeps saying give it time..but maybe there is no time..i have not lost any weight as of yet...still have a good appetite...i keep physically active and push myself to limits to see how much i can do...
i want any and all opinions
thanks for your time..
Hey Montrealer,
Welcome to the forums. You might find your questions are better answered if you start your own thread. :) Click the "New Topic" link at the top of the page to do so.
MtD
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Hi there..Thanks
Call me stupid, but I cannot seem to find the "NEW TOPIC" button (???)
Hey Montrealer,
Welcome to the forums. You might find your questions are better answered if you start your own thread. :) Click the "New Topic" link at the top of the page to do so.
MtD
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Hi there..Thanks
Call me stupid, but I cannot seem to find the "NEW TOPIC" button (???)
Go back to the page listing all the threads in this forum (or click here) (http://forums.poz.com/index.php?board=16.0) and at the top right of that page you'll see four buttons "Mark as Read", "Notify", "New Topic" and "New Poll".
Click "New Topic" (the third of the four buttons) and an edit screen will open allowing you to create your new thread. :)
MtD
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[Thanks again..I got it this time..
:-) :-)
I appreciate your help and guidance..
xx
quote author=matty.the.damned link=topic=31715.msg388457#msg388457 date=1268549490]
Go back to the page listing all the threads in this forum (or click here) (http://forums.poz.com/index.php?board=16.0) and at the top right of that page you'll see four buttons "Mark as Read", "Notify", "New Topic" and "New Poll".
Click "New Topic" (the third of the four buttons) and an edit screen will open allowing you to create your new thread. :)
MtD
[/quote]
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kev72,
I was wondering if you started having anxiety issues before you knew your status? I think that is what you said?? If so, were you worried about being possibly infected? I ask, because in the 2-3 years leading up to my diagnosis, I started having very bad anxiety and panic attacks. I would get a panic attack for no apparent reason. I've read a lot about how HIV can cause depression/anxiety on its own--not just from knowing your poz.
It just made me wonder why you think you were having so much anxiety. I wish you the best of luck. If you stay in care and get your labs done regularly, you should be able to prevent an OI until HIV meds can get your CD4 back up. No guarantee, but very likely.
Welcome to the forums.
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Hi Tednlou2,
I did indeed start to get anxiety and depression before I had any idea I was HIV positive. I had dealt with panic Attacks years ago, but never depression. I was always very active, motivated, never sat still. Suddenly during July 2009 almost overnight I developed anxiety. Every task started to cause me to get totally stressed out and feel like doom. It would get so bad that I would become weak and lightheaded when I would get stressed by simple things. As the weeks went on, Simple things like driving in traffic became unbearable. I started to lay around my house all day except when I had to go to my job 3 nights per week. By September I was much worse. I went to my family dr and had a full blood workup done. Everything came back normal except my Lymph's were slightly under the low normal range.
I went to an endo dr, cardiologist, and gastro dr, and everything checked out okay. Finally one dr noticed mild thrush. She said this is a flag for HIV. I became concerned, but since I have been in a 12 year relationship with someone who is neg I doubted my problem was HIV. I started to read everything on the internet and learned how the virus has no symptoms for many years. It was then that I started to worry about HIV. It was probably mind of matter, but I started to think I had every symptom of being infected. I think I went into a fight or flight mode and I resigned myself to the fact that I must be hiv poz. This forced me mentally to get tested because I was afraid if it is hiv it could be getting worse. Sure enough here I am with a CD4 of 11. Sorry for the long winded dissertation but I wanted to give a rundown. I feel 100% that HIV causes depression and anxiety from a physical perspective based on my experience.
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Kev,
Don't worry about a long response---I would rather you reply with details that a one sentence statement.
As I said, I got really bad panic attacks. I would get them in stores, the airport, etc. I think people probably saw me and probably thought I looked very nervous and suspicious...lol. I'm sure they thought I was going to rob the place or hijack the plane. It got to where I would avoid going places in fear I would have one. Even when I didn't have a full-out attack, I believe the chemicals or whatever causes the attacks would also cause me to feel run-down and just crappy. I, too, believe something about HIV causes these attacks in many people.
I had just another question about the thrush. I've always been told that I would know if I ever had it. I've read and seen pictures where it looks like curds of cottage cheese in the mouth that can be wiped away. I know I, and many others, have mistaken a coated tongue for thrush. Many people get a whitish coating on the tongue--especially smokers or people with post-nasal drip. Anyway, I'm sure your doc knew what she was seeing. I'm not doubting that. I'm just wondering if you saw thrush and whether it did look like curds of cottage cheese? Or, would you not have recognized it on your own?
Anyway, I wish you continued good health.
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Kev, sorry for your dx but also welcome to the family. If you have a good doc then you have nothing to worry about except to look after yourself, as it will be an ongoing relationship you'll have with him/her.decisions isn't always easy but essential to our health if it comes to meds.
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I had just another question about the thrush. I've always been told that I would know if I ever had it.
Hi Tennlou2,
Regarding the thrush, I too have read that thrush causes a coating on the tongue, can be painful, etc. I noticed a small area on one of my tonsils that had a faint white film on it. I would use a toothbrush to clean it off and it would appear the next day. I honestly did not pay attention to it as it was no bother at all and such a small area most people would not have noticed it. I mentioned it to my Dr who told me it was thrush and became concerned because it is a symptom of HIV. She gave me Nystatin lozenges. It went away in two days.
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Hello Folks,
Thanks again for the information and reinforcement. Being new to all this has been a little rough.
I went for a my second appt. with the ID doctor today and he placed me on Atripla. The reason I thought I would mention it because of the fact that my CD4 was so low to start. This may help others who are newly diagnosed with the same problem and if I have any significant issues due to starting with such a compromised immunity I can pass the information along.
My doctor did express that when starting out I may experience more side effects then someone with a higher CD4. He said not to panic and try and stick with it. So far today, after taking the meds the only problem has been a slight headache which comes and goes. I will post anything significant that may occur but my hopes are I will be fine and Ill post my test results in 2 weeks.
On a last note, I am not sure how all this works, but my ID doc gave me to option to join a clinical trial for Atripla with a 4th new drug added. The reason I mention this is this is being offered to people who have not been on any meds before and I think he said the cost is nothing. This may help someone with insurance issues. I am located in Central NJ but again I don't know how one would get into the program. I can pass along my ID Dr name and # if it helps.