POZ Community Forums
Main Forums => Living With HIV => Topic started by: Hellraiser on December 29, 2009, 01:47:53 pm
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I'd like to first say hello to everyone as I've been reading these forums for a month or two now and hadn't bothered with creating a name as I was content to read all of your commentary and posts without giving any of my own. I feel that I'm about ready to share what my experiences so far have been and maybe ask some questions. I'm not really sure if this is the correct forum for this, but if it isn't I will gladly move or re-post as necessary.
I was hospitalized 3 days for an abcess on my lower back about 5 months ago now. Staphylococcus Aurelius was the culprit and this clued my doctor in to test for HIV since I was an otherwise healthy 27 (28 now! :D) year old man. That test obviously came back positive as I'm here now. After being shuffled around the system due to a severe lack of funds on my part 2 months later I was given my first round of blood tests. I knew the results would not be good for a few reasons. I didn't know at the time that the white substance I was finding on my gums was thrush and that I was tired all the time because I was very anemic. I also had had major weight loss as 2 years ago I was 245 pounds and now I'm a much smaller 165 pounds. The first round of tests revealed I had a CD4 count of 15 and a Viral Load of 700,000+. Since being diagnosed I had begun to educate myself and I know my jaw was agape when I asked my doctor to repeat my CD4 count. It was decided I would go on atripla (which took another month since I had to apply for an ADAP card) and my next set of tests 2 weeks after beginning Atriple showed a CD4 of 16 but a Viral Load under 5,000.
It's now been 2 months and some change since beginning meds and I feel like an absolutely different person. The anemia has gone, I've gained back a few pounds, and I just FEEL better. My next set of tests will be in about another month and I'm hoping to see more encouraging news in the CD4 department.
So it took me 5 months to be able to write all of that down, but I already feel better about getting it off of my chest. I'm curious to ask a few questions from people who obviously know more than I do.
1) Is it common that someone with my low Cd4 count can get back to 200+ with no major OIs? None so far and fingers are crossed.
2) Is there ANYONE in the Mississippi/Louisiana area? I don't have many friends here and I've only told a total of 3 people that I'm positive. To me this is a second closet and I'm not enjoying the experience.
3) Since starting atripla my complexion has gone to hell and back, has anyone else had this experience? Normally my skin is very clear and I can't seem to figure out if this is something to just deal with or something that will go away.
4) Not a question so much as a thank you to everyone for being frank and humane. I was scared out of my mind initially and this place has been a good source of information and comfort.
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As a newbie myself I just want to say hi!! It took me a year to write my story which I only did this week and I cannot beleive the response and support you get from people you have never met it is great.
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Hi and welcome! Don't be alarmed if it takes a while for your CD4 to recover. Everyone is different and you may bounce back quickly but don't sweat the numbers as long as they are moving in the right direction. As far as your complexion, your skin is its own little ecosystem with hundreds of types of good and bad bacteria. When your immune system is working better you should notice an improvement-- I did.
Ford
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Since you were treated for a staph infection and have had thrush, I recommend you take probiotics supplements. Also, HIV wreaks havoc on so many things, among them our levels of vitamins and minerals so a good overall vitamin/mineral supplement wouldn't be a bad idea. It's possible that the skin issues could be a result of a deficiency in that area, especially with all the weight loss.
It seems like you are well on your way to a nice recovery. As Ford says, don't be discouraged if it might take a while to get your CD4s way up, this is sometimes the case.
Are you on PCP prophylaxis such as Bactrim?
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I'm allergic to sulfa drugs such as Bactrim so I'm taking Mepron, I'm also on Azithromycin, I was on Flucanazole as well, but the doctor said I could stop it and see if the thrush came back (it hasn't). I do take a vitamin supplement already. I'm also taking Claritin in an attempt to combat the "Acne" although it's predominantly on my face, upper arms, and upper back.
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Hi and welcome,
While reading your post, it struck me, that I should suggest you always check your meds for interactions with other drugs, supplements, foods etc. One means is by way of "Check your meds" option in the "Treatment" menu above.
Good luck.
Richard
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I'm allergic to sulfa drugs such as Bactrim so I'm taking Mepron, I'm also on Azithromycin, I was on Flucanazole as well, but the doctor said I could stop it and see if the thrush came back (it hasn't). I do take a vitamin supplement already. I'm also taking Claritin in an attempt to combat the "Acne" although it's predominantly on my face, upper arms, and upper back.
Taking probiotics is very important, especially after going off azithromycin, so you can re-build your good bacteria; it also helps in avoiding thrush.
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hey man...sorry to hear that you've gone thru so much but it sounds like you are getting better and thats the important thing!! I'll make this brief.... I found out in 5/09 i was poz. About a month before that I had a horrible chest/stomach pain when swallowing/eating. I was taking medication for acid reflux.
Well in May I went in to my Dr to get my cholesterol checked, only because my mom hounded me about it and we have heart disease in our family. I decided to get an hiv test then also since it had been so long. I went home, didnt think anything about since I "knew" it was neg...it came back poz.
June my cd4 was 94 and my vl was 400K. As you said my mouth hit the floor. I had been feeling tired for months but just figured it was my schedule...I work 3rd shift.
Also right after that I found the "white stuff" in my mouth also as you said and knew exactly what it was since I had been researching nonstop online since I had found in may I was poz. I knew then that the throat/stomach pain I was having was from thrush, not acid reflux.
The dr's immediately put me on fluconazole, and a liquid wash and swallow stuff (cant remember the name) within two days my mouth cleared up and no more throat/stomach pain!!
My dr wanted me to get a scope done just to make sure so I did that...there was a little bit of damage from the thrush so I am on omeprozole now for that.
Finally started atripla in september of 09. My first blood work after meds I did in 11/09. My cd4 went from 94-210!! and my vl dropped from 400K to 500. I couldnt beleive it.
I am now feeling so much better, have much more energy, I am my old rambunctious, smart ass self again and am looking forward to hitting the gym again next week after a long stressful christmas/new years!! haha.
I just wanted you to know that the meds will make a huge difference and that you will get better! Its great you are already feeling better also...thats a great sign!!
I have a friend of mine that not even a year ago was in the hospital, found out he was poz, had KS, PCP, and his cd4 was only 20!! Hes been on meds and some other stuff and that was about 9 months ago and he is undetectable with a cd4 of over 300 now.
Keep your chin up man...it will get better. You will get better and all of this will be behind you.
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Hellraiser,
I am not going to be all "feel good" about my response, but rather give you the benefit of my 27 years of living with HIV/AIDS.
1.) None of us can say if it is common for anyone to recover their immune system quickly, without any OIs. This disease wrecks havoc with our immune system, and to have as low a CD4 as you have, and as high a vl as you did, indicates that your immune system is quite damaged. Your CD4s live approximately 73 years, and you have lost a whole bunch of them, so as you rebuild your immune system the new CD4s will be naive, or unable to guard against some common pathogens. This is why we get PCP, and many other common diseases that are in a normal person, not even noticed. Yes, you might get some OIs, but nobody here is qualified to answer this question the way you asked it.
2.) Don't know about where you live, I live in AZ.
3.) Skin issues, such as what you ask about, are very common until you can reconstitute your immune system. It is called Foliculitis, which I have had off and on for the better part of 27 years. It was much more pronounced before I started medications.
4.) You are welcome. ;)
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Welcome to the group. I'm sorry to hear about all the hell you've been through. It sounds like you're getting better. The skin issues could be due to Immune Reconstitution--think that's what it is called. Some people feel bad or get ailments as their immune systems are rebuilding.
It is a mystery why some get several OIs and others dont. My former partner progressed to AIDS with CD4 of 7. He got staph infections. I don't think he ever got PCP or thrush. I know some OIs can depend on where you live. I've read where some organisms that cause OIs are found in certain places like the Ohio Valley for example.
I wish you the best. I just made a post how I felt better on 4 days of Atripla the hospital gave me. I'm resistant to Atripla now, so make sure you don't stop on your own. It sounds like Atripla is working for you. I know what you mean about the 2nd closet. I've only told a couple people. It gets so tricky when people wonder why you aren't feeling good, or wonder what doctor appt you're going to, or you have to make sure you put away HIV medical papers, books, etc so visitors won't see it.
You are too young to have to be dealing with all this--although I think we are all too young to have to deal with it. Let us know your progress. This has been a good place to get answers. People on this site have been awesome. thebody.com and johnhopkinshivguide.com are good places for info. On both sites, you can ask HIV experts questions. I think just about all my questions have been answered.
Again, all the best. I'll be waiting to hear when your CD4 gets to over 300, 400, 500, etc.
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Thanks, and after looking around it does look like what I'm dealing with is Folliculitis. I surely hope this will go away at some point as it is pretty severe at the moment.
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Welcome to the forum Hellraiser..... I am very new myself to this forum, I as well did some reading on here then created an account when I felt comfortable to share my positive results. I too have not had any blood drawn for labs due to lack of insurance but signing up on ADAP and Ryan White.... This is a great place to connect and reach out and ask any questions as I am sure you are aware of it! Blessed Be....