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Author Topic: HELP! Just diagnosed ...told I have AIDS  (Read 12213 times)

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Offline jughead

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HELP! Just diagnosed ...told I have AIDS
« on: July 15, 2008, 01:10:38 PM »

Hi everyone...

if you've read my previous posts you know I was diagnosed HIV+ June 17 and have been waiting first for a Dr appointment and now for my bloodwork... I just got a call from my social worker at the clinic who told me my CD 4 count was low and that my viral load was high... I said "does this mean I have AIDS?" and he said yes... I asked if I could come see the Doctor sooner than my scheduled appointment (another week and a half)... and haven't heard back from him yet...

I'm already being treated for thrush and had shingles a few months ago before my diagnosis

I'm numb and suddenly feel cold... Is it normal to be given news like this over the phone? Other than depression, sadness, I don't feel physically sick... I'm really scared...


Offline Miss Philicia

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Re: HELP! Just diagnosed ...told I have AIDS
« Reply #1 on: July 15, 2008, 01:32:18 PM »
Yeah, I was told that over the phone (15 years ago).  I was even told my actual HIV test result over the phone.

So how long until your actual doctor's visit?  I guess I'd just advise that you try to busy yourself until then -- have you told any friends all this news?  I found it helpful to go out to dinner with someone who knew the first couple weeks of my "HIV news."

At least you've already gotten treated for thrush and shingles, so you've crossed that bridge even though you weren't sure what was causing it at the time.

I know that you said that you're in therapy for bi-polar issues.  I will assume you take medication for this already, but I just wanted to make sure that your prescribing doctor knows what events you are going through right now to make he'll be on the same page as your HIV doctor, as obviously you will go on HIV medication soon.

Short story:  lots of us on the board have begun our HIV journey with an AIDS diagnosis.  All it means is that you have more work to do at the beginning than some other HIV patients, so you just have to be attentive about things.  It also eliminates any of that "when do I begin HIV med" stuff that others dillydally with for years.  HIV treatment in the year 2008 is quite good, and you should be fine.

And, of course, you have this on-line forum to research and use when you need to vent, but I'd advise being prudent as you digest HIV information on the internet.  It's VERY easy to overdo it with all that.  Take baby steps with all of that and just get used to things mentally.
"Iíve slept with enough men to know that Iím not gay"

Offline jughead

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Re: HELP! Just diagnosed ...told I have AIDS
« Reply #2 on: July 15, 2008, 01:51:54 PM »
Hi Philly and thanks for the quick response...

I've told one very close friend who is also POZ ( he actually called this one when he found out about the shingles and thrush)...and I've told my therapist... My mental health MD knows about my status too...

I see what you mean about the internet and HIV... and how too much information sometimes can overwhelm you...

I'm still numb and just wish I could cry but "it ain't happening"... maybe that's a good thing?

When you say "more work"  I think I know what you mean...I'm just worried that the meds are going to make me sick and put me in the hospital or something...

I'm just afraid period...

Thanks for listening,

Offline Miss Philicia

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Re: HELP! Just diagnosed ...told I have AIDS
« Reply #3 on: July 15, 2008, 01:58:53 PM »
I wouldn't worry about reactions to HIV meds until you actually have one -- many people have little to no bad reactions, and find them tolerable.  For example, in my 15 years I've probably taken 80% of the meds currently on the market, and if you feel anything it's generally during the first month and it's just stuff like headaches (aspirin has always made it go away for me), mild nausea, and diarrhea.  All of these things have either been moderate, or offset with over the counter things.

I'd say one of the best first lessons to have is to not worry about things until they happen.  Seriously.  And since you're in therapy already if you find yourself over worrying I'm sure your therapist can help you with some cognitive behavioral stuff to address anxiety issues, and there are also good meds for that.

And yeah, I had a few crying sessions when I got the news but they were quite limited.  Most of the time I was just too overwhelmed to cry.  Feel free to PM me if you need to.
« Last Edit: July 15, 2008, 05:05:18 PM by philly267 »
"Iíve slept with enough men to know that Iím not gay"

Offline woodshere

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Re: HELP! Just diagnosed ...told I have AIDS
« Reply #4 on: July 15, 2008, 03:20:09 PM »
Philly has given you great advice!!  What I would add is on the personal side and sort of a note of encouragement.  I was diagnosed in Mar, 2006 and found myself with the "dreaded AIDS" diagnosis.  I started meds immediately. Fortunately I have suffered none of the short term side effects and they have done their job.  My cd4 count was slow to rise, so if yours doesn't jump by leaps and bounds don't be to concerned.  The important thing is that your VL goes to undetectable in the first 3-6 months and that your CD4 count and % improve over the long run.  I went undetectable in about 4mths and have remained so and my last CD4 count was 580.

One bit of advice concerning your meds.  Be sure to talk with your doctor about which medications will fit into your lifestyle the best in terms of adherence.  What my dr. originally suggested would have posed some adherence problems for me so we chose a different set of meds.

Best to you,
"Let us give pubicity to HV/AIDS and not hide it..." "One of the things destroying people with AIDS is the stigma we attach to it."   Nelson Mandela

Offline dolcevita08

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Re: HELP! Just diagnosed ...told I have AIDS
« Reply #5 on: July 15, 2008, 04:55:44 PM »

Welcome to the forums, I am sorry you are going through a difficult time.  I know how it feels and this forum was not only comforting to me when I was first diagnosed but was a great source of information.  I was diagnosed with AIDS in April of this year (close to four months ago) when I was hospitalized with PCP (pneumonia). I had thrush as well. Prior to that I was unaware that I was HIV positive. My CD4 count was very low and I lost about thirty pounds (I was not overweight to begin).  I was shocked and scared and worried that life could not be normal again.

There is hope, and things can get better if you take care of yourself.  I know its scary but it gets better.   Since the diagnosis, I have started meds and my health has rebounded and is improving daily. All the weight came back, I am back in the gym, feel good, am working and going about my life as relatively normal as possible. 

When it came to selecting meds, I too was worried about side effects of the drugs and discussed them at length with my doctor. I selected a regimen that I thought would work with my lifestlye (reyatz/norvir/truvada). The side effects were minimal for me luckily--they obviously can happen but I wouldn't stress about them too much prior to starting.

This site has a lot of great information on it and the members here are very supportive.  Your local ASO (Aids Service Organization) can be a great resource as well. 

Good luck to you and stay strong! Know that we are all here for you. PM anytime if you need to.

Dance as though no one is watching. Love as though you have never been hurt before. Sing as though no one can hear you. Live as though heaven is on earth.

Offline jughead

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Re: HELP! Just diagnosed ...told I have AIDS
« Reply #6 on: July 16, 2008, 11:45:09 PM »
Thank you so much Dolce and woods and everyone else who replied...
have a Dr. appt tomorrow

Offline jughead

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Re: HELP! Just diagnosed ...told I have AIDS
« Reply #7 on: July 17, 2008, 03:43:49 PM »
My CD4 is 65
viral load 152891

took a genotype test today...
scary numbers huh?

Offline atlq

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Re: HELP! Just diagnosed ...told I have AIDS
« Reply #8 on: July 17, 2008, 06:26:01 PM »
Nahhh...I've seen much worse!....I know you are scared right now, but know this...HAART is effective in almost all cases and well tolerated in the vast majority of cases...just remember to take  the lead in dealing with virus, educate yourself so that you are a partner with your doctor, not just a patient and take a deep breath. ....you are going to be around  a long time!...  ;D
ďKeep up the good work....   And God bless you.Ē
  --  Sarah Palin, to members of the Alaskan Independence Party, 2008

Offline BlueMoon

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Re: HELP! Just diagnosed ...told I have AIDS
« Reply #9 on: July 19, 2008, 10:20:14 AM »
Hello Jughead, welcome to the forum.

Yes, those are scary numbers, but just knowing them means that you can begin recovering.  It takes a couple of weeks to get genotype results, then you can begin medication which will knock the viral count right down.  After that you'll see your CD4 count recover.
08/10-- ......<40.....290.....42
05/10-- ......<48.....290.....46
02/10-- ......<48.....481.....44
10/09-- ......<48.....277.....46
07/09-- ......<48.....300.....38
05/09-- ........51.....449.....39
03/09-- Added Isentress
02/09-- ........65.....299.....34
11/08-- ........62.....242.....40
08/08-- ........66.....212.....29
05/08-- ......202.....217.....27
03/08-- ....5210.....187.....21
02/08-- Began Truvada/Reyataz/Norvir
12/07-- 273,000.....157.....22
11/07-- 229,000.....209.....22
10/07-- Diagnosis

It's a complex world.

Offline jughead

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Re: HELP! Just diagnosed ...told I have AIDS
« Reply #10 on: July 19, 2008, 01:17:46 PM »
Thanks Blue Moon and ATLQ...

These numbers just have me freaked out...I'm afraid I'm going to pass out on the street or something crazy like that...
I'm very grateful that aside from depression and fatigue I feel pretty much fine...

anyone else get diagnosed with high numbers like this? My last negative test result was June 06...
I'm sure (now) that I seroconverted August 07... why such bad numbers? anyone know?

Offline GSOgymrat

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  • HIV+ since 1993. Relentlessly gay.
Re: HELP! Just diagnosed ...told I have AIDS
« Reply #11 on: July 21, 2008, 06:04:51 PM »
Welcome to the forum. I've had worse numbers and felt perfectly fine. Once you get on a good medication regimen you will see the numbers go up. Philly has given you a lot of good advice. Things will get better.

Offline jabez

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Re: HELP! Just diagnosed ...told I have AIDS
« Reply #12 on: July 30, 2008, 01:25:59 AM »
Hi, Jughead ... a year ago, I was right where you are now ... CD4 was in the 60s, viral load was high as the sky.   I thought I would fall over dead during the 10 day waiting period between my genotype test and the day I started meds.   Flash forward to 2008 --- everything is good now.   You'll be fine. 
Sept 2007 -- CD4 = 68; VL = 469,000
Started Atripla Sept 21, 2007
Nov 2007-CD4=217;VL=332
Feb 2008-CD4=237;VL=<50
Apr 2008-CD4=271;VL=66
Aug 2008-CD4=440;VL=52
Jan 2009-CD4=403;VL=61
May 2009-CD4=480;VL=129
Sep 2009-CD4=376;VL<40
Jan 2010-CD4=476;VL<40
Jul 2010-CD4=539;VL<40
Jan 2011-CD4=461;VL=53
Jul 2011-CD4=515;VL<20
Jan 2012-CD4=506;VL=54
Aug 2012-CD4=440;VL=21
Jan 2013-CD4=447;VL=<20
Jul 2013-CD4=406; VL=<20
Feb 2014-CD4=450; VL=<20
Aug 2014-CD4=535; VL=<20
Feb 2015-CD4=535; VL=<20
Aug 2015-CD4=707; VL=<20

Offline jughead

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Re: HELP! Just diagnosed ...told I have AIDS
« Reply #13 on: July 30, 2008, 02:39:11 PM »
Thank you Jabez... I need as much reassurance as I can get... I read your previous post and how you had to wait 10 days for the genotype results ...Mine is going to take 3 weeks I'm a little over halfway there...

Thanks again for taking the time to write


Offline Craig97

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Re: HELP! Just diagnosed ...told I have AIDS
« Reply #14 on: August 01, 2008, 04:38:17 AM »
Hey jughead, I totally feel your pain.  I had NO idea I was positive.  I had never had unprotected sex.  I had never been a bottom.   I had received oral service and liked being rimmed, but I had never been penetrated, and I had never sucked anyone off too completion.  So I was SHOCKED when I was told over the phone that I was HIV+  I had never had a test because I thought I was really safe.  I only really topped one guy, and I always wrapped it up before I inserted. 

I was having Thrush issues, and had a couple of outbreaks of MRSA (staff infection)  I went to a ENT to have him look at my tonsils, and I had thrush, so he asked me a few questions and suggested a HIV test for me.  I agreed w/o any worry.  I thought I had been VERY safe.  I have never used drugs, and I'm not much of a drinker, so I knew every sexual encounter I have had.  I have had many, but nothing considered risky at ALL.  Then he called me the next week and told me over the phone I had tested +.  I went the next day to another testing site and got tested again.  I couldn't believe it.  They sent of the blood work again for me and told me the following week I was +.  I was scheduled for a ID doctor 3 months from then.  That was the quickest they could get me in.  I didn't have a regular Dr. so I went to a medicine clinic and they treated my underling problems. (Thrush, and sore throat)  They put me on preventative drugs for OI's and did a genotype so that the ID doc would be fully aware on my first visit instead of me having to wait a couple of weeks after my first visit to find out what my counts were.  My Medical doc called me in 3 days after my test and told me the "bad" news.  My CD4 was at 5 ,and my viral load was over 500,000.  I thought I was going to die quickly.  I didn't know anyone with HIV and I thought my life was over.  I told my best friend, and then crawled into bed for 2 days and felt AWEFUL.  I didn't get out of bed.  I had really been sick for a while, and wasn't eating much to begin with, but I couldn't eat anything.  My best friend would call and check on me and bring me food, but it would just sit by my bed.  He really didn't know what to do.  My friend let me do my own thing for those 2 days and then told me to "WAKE UP" and get out of bed my self pity was over.  He wasn't going to let me just lay there and die.  So we contacted a local HIV service center and my case manager set up things for me and gave me places to get information.  I felt good after about a week, but still had a couple of months before I could get into my ID doc.  I called and talked to the nurse, and she talked to the doc and said there was no need for me to come in early 2 months would be OK.  I was not understanding, I knew by then he was the only doc that could put my on meds to help my viral load and CD4 count, the Medical doc couldn't prescribe those meds to me. 

Flashforward.  He put me on 6 different kinds of meds in October of 2007.  I go back next Tuesday to see my results, but 4 months ago when I went, my CD4 was up to 74 and my viral load was down to 70.  He was shocked that I wasn't below 50 and undetectable, but I had some resistance to my meds, but he was certain it would be below 50 by August. 

I have had very little side effects to the 6 meds I'm on The HIV drugs I'm on are (Norvir/Rayetaz/Truvada)  I'm also on fluconzal for thrush, dapsone and azythromicin to help prevent OI's until my CD4 gets higher.  Nothing too bad.  My eyes are a little fuzzy somedays (just my right one, I go into the eye doc next Tuesday also just to get them tested)  I also have been a little yellow a couple of times in the last year.  Nothing a tan can't cover up.

I'm sure everything will be GREAT for you.  no need to worry, your counts seem better than mine after I've been on meds for almost a year, and I feel great now that I've been on meds.  I really haven't been sick since I've gotten on meds.  I have a little cold right now, but I'll see the doc next week.  I was sick about 4-5 days every month for the whole year  before I got diagnosed.  Let me know how the first ID doc visit goes.  I know you'll be GREAT

Offline BT65

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Re: HELP! Just diagnosed ...told I have AIDS
« Reply #15 on: August 01, 2008, 07:08:52 AM »
Craig, I just wanted to welcome you to the forums.  I'm glad you have good care going on; that's very important.

Hope to hear more from you!
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

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Offline 100proofBrandy

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Re: HELP! Just diagnosed ...told I have AIDS
« Reply #16 on: August 01, 2008, 07:10:16 AM »
I feel for you hon when I tested poz it was 2 months before I had a complete blood  work up I to had thrush and shingles and cervical cancer I was so sick at first when the blood work came back I had a CD4 count of 54 and my vl was really high I remember thinking how can it be so high the doctor told me I had AIDS I remember him saying to get my affairs in order ( what bull) its been 11 years now Ive been poz and my CD4 is 698 and I'm undetectable I have very little side affects to my meds as long as I eat with them :( I am on Norvir/Reyetaz/Truvada so please try not to stress out to much your levels will get better :) I dont say not to stress because that is natural to stress this is a hard confusing time for you but we are proof that it can and will get better
The person you educate today maybe the one you save tomorrow :)

Offline jughead

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Re: HELP! Just diagnosed ...told I have AIDS
« Reply #17 on: August 08, 2008, 10:21:17 AM »
Thanks Craig and Brandy,

I really appreciate everyone taking the time to write...  Wow Craig our stories are very similar...

It's very comforting and reassuring to know that I'm not alone and that others have been through the same thing and turned out well...

I got the results of my genotype...

NO Resistance to anything ...Yay!

gotta get to work Have a great day everybody and thanks again and best wishes to everyone on these boards...


Offline yasoza

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Re: HELP! Just diagnosed ...told I have AIDS
« Reply #18 on: August 10, 2008, 12:21:09 PM »
dont worry jughead, you will be fine once they put you on haat, been living with the bug for 15yrs, i started my meds when my cd count was 160 and vl was 89700 that was january this year, now cd 480 vl <40 for may-june blood, my nest lab visit will be next month. Dont panic i have been in the same line like you now i feel healthy

Offline jughead

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Re: HELP! Just diagnosed ...told I have AIDS
« Reply #19 on: August 10, 2008, 12:35:24 PM »
Thanks Yasoza! I appreciate you taking the time to write me...
I'm going to be starting meds Tuesday


Offline nolapozguy68

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Re: HELP! Just diagnosed ...told I have AIDS
« Reply #20 on: August 11, 2008, 01:56:54 PM »
jughead (my dogs name also)  you will be feeling fine in a few some people it takes days and some a couple weeks when i started my meds i could 'nt even get outta bed that's how sick i was three days later i was outta bed and feeling like nothing was wrong.... just take it easy for a few weeks till you get used to the meds and i bet you'll be back to new

new Orleans
AIDS/HIV housing case manager for non profit in new Orleans 40 years old poz for4 years healthy guy who cant find a normal gay man to love me.......


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