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Author Topic: New to this and not sure what the hell im supposed to do.  (Read 4198 times)

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Offline JBN727

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New to this and not sure what the hell im supposed to do.
« on: October 11, 2007, 06:14:08 PM »
Hello everyone. I've been reading your stories threw the different forums and i must say, I had to join. I think this site could help me out alot.

My name is John, im 24 years old and Im from Clevleand Ohio. I tested Positive 2 months ago. I was on my way home from my moms house and I called a friend of mine who happened to be at the free clinic getting tested, and I had actually never Been tested before. I think it was the fear of the un-known. anyway, Went and got tested, they were already done by the time that i got there, but they waited for me, they said there results came back in like ten minutes, well 45 minutes later, im wondering why i havent been called back. Finally, someone comes and calls my name. He took me into a tiny room and looked at me, and I knew.... My entire body went numb, you have that voice in your head saying "oh my God, this can't be happening to me" But, it is. I didn't break down, i just had to sit there for a moment and pull myself together, they did a confirmation test which also came back positive. So they then drew like 20 viles of blood from me (barf) Finally my results came back in.... well i was hoping because im only 24 and in pretty darn good health, i was thinking i would be nearly undetectable. Not quite. my CD4s are 233 and my VL is 30,700 .... He said judging by number i'd been infected anywhere from 4 - 6 years ........ I thought I was going to loose it. I was always the person asking every single person i had sex with if they were neg or poz, and always used protection. So I had no idea. and the fact that I had never been tested didnt help. So the doctor decided to start me on Meds Immediately. He put me on Atripla Which is a combination of Sustiva (which i can thank for this rash, ill get to that in just  moment) EMTRIVA, and VIREAD. I started taking the pill, the day that would have been the 8th day, I noticed a rash on my chest, i didnt think much of it. the next day and I had to think something of it, it was covering my kneck, my chest and my shoulders, i callled me dr. he called me in to see him the same day, he said it was common, but wanted to stop medication. Im still not sure why he stopped it, i;ve been told by several people its not good to stop Atripla. But anyway, He just stopped it and sent me home and told me to come back in a week. The next day I woke up and the rash had covered nearly my entire upper body. It looks horrible. so I called him again, we went back in to see another doctor my doctor wasnt in. She decided to put me on a Prednizone taper. And that brings us to today. So Im not sure what is going to happen, but i do kinda think i shouldnt have been told to stop taking the medication.

So far i've had alot of support from my friends, thank god. I don't know what i'd do without them. and my other as well.... When I first came out to her the first thing she said to me was "becareful I don't want to see my son die from AIDS" and now to have to tell her that im HIV + was very, very hard to do. But she told me that "she will always love me no matter what and she will be right there beside me to make this Journey with me" .....That was a huge relief .... Im just very fortunate for the people in my life.

I just want to know how and whats going to happen. what meds im going to be on, and if im going to have to deal these rediculous side effects. so.......... B L A H

now That I got that out of the way, I will look forward to chatting with you all in the future :-)


Im not giving up!....If this thing wants me, it better plan on a long ass foot race.

8/07 CD4 233 18% VL 30,700
9/07 started Atripla
9/07 Stopped Atripla Severe Allergic reaction
11/07 Started Truvada
11/07 Started Reyataz and Norvir

Offline MOONLIGHT1114

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Re: New to this and not sure what the hell im supposed to do.
« Reply #1 on: October 11, 2007, 06:37:03 PM »
Hi John~

Welcome to the Forums.  I'm sorry to hear about your rash from Atripla.  My online GF from these Forums started Atripla about two weeks ago and went through the same thing.  Refresh your screen, cause I'll go and find the link to her thread for you to read.

I understand your confusion about not knowing what you're supposed to do, but I am confident in saying that you have taken a great first step!  You went and got tested.  We all wish we weren't dealing with this virus, but I assure you that you can manage by being responsible and diligent.  Reaching out to others is an excellent start, whether its you seeking info, or you sharing your experience with people who haven't been tested and don't know their status.  The virus can stop with you if you are responsible and always use protection.  I cannot stress enough how important it is to go in for regular check-ups with an infectious disease doc who is knowledgeable about HIV. 

The toughest thing for me has been the emotional toll that the virus has taken on me over the years.  Its a see-saw with some days being an emotional high and other days you feel like you'll never get out of the dumps.  I, too, decided to go get tested shortly after I turned 24, because I was in a monogamous relationship for 2 years at that point, and hadn't been tested since college.  I feel that because I was proactive in getting tested, well, I feel that's why I'm here today.

The threads are a great source of information as well, you can get lost in them for hours, reading all of the posts.  Knowledge is power, and so is support from people close to you.  I'm glad that you disclosed to your mother and that she is supportive of you.

Hang in there, you have a lot to live for!  Here's that link.....


~Cindy in Maryland
« Last Edit: October 11, 2007, 06:40:48 PM by MOONLIGHT1114 »
HIV+ since '93, 1/12 - CD4 785 and undet.   WOO-HOO!!

Offline FMB

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Re: New to this and not sure what the hell im supposed to do.
« Reply #2 on: October 11, 2007, 07:31:14 PM »
Hey John,

I know it's easy to say but please try not to worry too much, you and I have similar first numbers (CD4=260 / VL=80,000) and yet I know I just turned positive because I did test regularly every 6 months for the past ten years, negative everytime, right up to my last neg test on Aug 9. I was very shocked to see these as my first numbers, but my doctor was very confident about them and said that a trend needs to be established before jumping into meds, the seroconversion process is longer than just the 2-week flu some of us got, it is a major adjustment for the immune system to establish it's own line of attack, some people see a natural rebound after the first big hit, I know in my heart that is what is happening to me, and I am fine waiting until the next bloodwork results. Even if it does mean meds way earlier than we thought, we are so fortunate in 2007 to have the selection of lifesaving combinations to literally save us. I am so grateful for all of the drug pioneers before us that have given us the chance to live with way less side effects when we need to use the meds.

As for your doctor stopping the Atripla, I have read other stories on here about an initial rash quite bad that does go away after some time, but I would guess that your doctor saw an intensity to the rash that made him decide to stop you right now. At only 1 week of treatment, I think that is a short enough time that it wouldn't adversely affect you or the HIV at all. But has he decided to try a new regimen to replace the Atripla? If you don't feel comfortable with the treatment your getting from the docs, I would highly suggest in this case of getting another opinion.

The more I research what we are going through is the more I realize that everyone's body reacts to this in a unique way, and that there are many approaches to treatment, and alot of educated guesses too. For the doctor to tell you that you have been infected for 4-5 years already is an educated guess, but remember my situation, they would have guessed the same thing had I not had the 10 years of regular conclusive neg tests to back it up.

Keep us updated and remember there are alot of us on here who know exactly what you are feeling, and know that we are still going to live the same full life as before, I even feel honestly with more intensity than before.

Big Hugz,
Aug'07 Seroconversion
Sep'07 Tested Poz
Oct'07 First Bloodwork: CD4 260 / VL 80,000 ???
Nov'07 Second Bloodwork: CD4 670 / VL 3,100 ;D

Offline xyahka

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Re: New to this and not sure what the hell im supposed to do.
« Reply #3 on: October 12, 2007, 10:08:20 AM »
Hi John,

I would also recommend you to seek for a second opinion, starting meds is something important and your Dr cannot start them and then stop them just like that. That's the reason why we have to be educated about how this virus works, so we can negotiate Drs opinions to make sure they serve our best interests. There is lot of info about treatment in the lessons link at the top of the page. Check it out, i am sure they will help you.

I personally think any person above CD4: 200 at the moment of diagnosed should wait at least another CD4 test to see if his/her CD4 develop a trend to go low or high. By experience i can tell you we can increase our numbers a bit if we take some measures and go for a healthy lifestyle. My advise... ask for another CD4, VL test before accepting meds again. If your CD4 goes higher... ask your Dr to wait before prescribing meds. If your CD4 goes lower then ask your Dr couples of days for you to check the info about the new prescription he will give you and to make an informed decission, after all it is our life not theirs.

The good thing, is that you have good numbers so you can take couple of days to read about this and be prepared with questions for the next meeting with your Dr.

All the best,

Juan Carlos (who knows people diagnosed with a CD4 of 201 and have been able to increase them without starting meds immediatly)
13/03/07 1er diagnóstico /Peso: 79kg
19/04/07 CD4: 494 /CViral: ?? /Peso: 80kg
19/07/07 CD4: 659 /CViral: ?? /Peso: 79.5kg
06/03/08 CD4: 573 (después de meses muy deprimido) /CViral: ?? /Peso: 79kg
17/09/08 CD4: ?? /CViral: ?? /Peso: 84Kg
06/02/09 CD4: ?? /CViral: ?? /Peso: 85Kg /HCV: Neg /HBV: Neg.
07/03/09 CD4: ?? /CViral: ?? /Peso: 87Kg / Gym 3días/semana y Natación 2días/semana.
12/05/09 CD4: 470 /Cviral: ?? /Peso: 87Kg.
08/07/09 CD4: ? /CViral: ? /Peso: 77Kg.
09/12/09 CD4: 510 /CViral: ? /Peso: 78kg. No medicinas aún
10/01/10 CD4: ? /CViral: ? /Peso: 76Kg.
15/05/10 CD4: 320 /CViral: ? /Peso: 76Kg.
01/02/11 CD4: 291 /CViral: ? /Peso: 78kg.
05/05/11 CD4: 366 /CViral: ? /Peso: 78kg.
27/07/11 CD4: 255 /CViral: 138000 /Peso: 78kg.

Disfrutando y aceptando una nueva vida...

Offline Florida69

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Re: New to this and not sure what the hell im supposed to do.
« Reply #4 on: October 12, 2007, 11:01:58 AM »
I am sorry to hear about your diagnosis, that is horrible to go through that, I am glad that you are pulling yourself up by your bootstraps, that is the first step I guess.  I don't get why the doctor started you on meds and then stopped you, also, but you seem to have had an allergic reaction which is common with these meds.  D
Nothing in the world can take the place of Persistence. Talent will not; nothing is more common than unsuccessful men with talent. Genius will not; unrewarded genius is almost a proverb. Education will not; the world is full of educated derelicts. Persistence and determination alone are omnipotent. The slogan 'Press On' has solved and always will solve the problems of the human race.
Calvin Coolidge

Offline AustinWesley

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Re: New to this and not sure what the hell im supposed to do.
« Reply #5 on: October 12, 2007, 11:49:45 AM »
Hey John,

Well, I don't agree with your doctor's assessment necessarily.   I was told something similar by a doctor I fired a long time ago that too despite the fact that I'd been tested on a regular basis.   Ignore that, cause it really doesn't mean anything anyway.   Some people's numbers are all over the place and everyone's are different.

Did your doctor run a genotype prior to prescribing meds to check for resistance?

I'm a bit surprised they'd stop over a rash, but it depends I guess on the severity and situation.   There are a number of other treatment options. 

I don't think any of us knew what the Hell we were supposed to do.  Your mom sounds like mine ; )  I think mom's are the hardest to tell, but my entire immediate family all knew the first day and I'm lucky too.

Sounds like you are holding it together very well so far.   I got the run around initially with a host of crappy doctors including one who told me that my positive test result was probably a "false positive" and talk about being thrown on a wild goose chase.   

I didn't know a single person who was HIV+ initially so felt completely lost then.  It sounds like you have some great family and friends and I'm glad to hear that.

I'd ask around who the best HIV docs are in your area and consider finding a new one if you keep running into a brick wall with this one.   

Holler if I can be of any help or assistance.

Hang in there, it's gona get better.

Diag. 3/06  Infected aprx. 2 mo. Prior
Date        CD4   %      VL
4/6/06     627    32    36,500     NO MEDS YET!
6/7/06     409    27    36,100
8/23/06   408    25     22,300
1/2/07     354    23     28,700
2/9/07     139    30     23,000  Hep A Vaccine same day???
2/21/07   274    26     18,500 
3/3/07    RX of Truvada/Sustiva Started.
4/5/07    321     27      Undectable 1st mo.  
5/16/07  383     28    Undectable 2nd mo.
8/10/07  422     32   UD <48 on new scale!

Offline JBN727

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Re: New to this and not sure what the hell im supposed to do.
« Reply #6 on: October 12, 2007, 01:19:08 PM »
Thank you all for your comments. Im currently not taking the meds. I go back to the doctors on the 18th, they are going to give me the results of some tests they took, and i believe they are gonna draw my CD4 and VL again. So Hopefully we will get a better idea of where i am. and hopefully not have to even consider medication. (and let me say, I wont be disapointed when this rash is gone) Its covering almost my entire body, rediculous. but thankfully it doesnt itch as much as youd think it would.
Im not giving up!....If this thing wants me, it better plan on a long ass foot race.

8/07 CD4 233 18% VL 30,700
9/07 started Atripla
9/07 Stopped Atripla Severe Allergic reaction
11/07 Started Truvada
11/07 Started Reyataz and Norvir


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