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Main Forums => I Just Tested Poz => Topic started by: prayerblue on September 18, 2008, 05:36:45 pm

Title: Help... I just got my result...
Post by: prayerblue on September 18, 2008, 05:36:45 pm
I am well versed in the "am I?" forum, but I just got my bloodwork in today... it was positive reactive.

I didn't cry as much as I thought I would, but my world feels like it's crumbling... this is where I guess I hope someone here can give me some advice that makes me not think I'll be dead very soon.

Please... I'm not going to lie and say I'm planning on killing myself, but I've been losing so much weight that I can't imagine I'm not already dying of something internally beside this... and I hear so many bad things about seroconversion being an indicator of your prognosis...

Someone, anyone, please help me...
Title: Re: Help... I just got my result...
Post by: loop78 on September 18, 2008, 06:58:10 pm
Hi Blue,

First of all, if I'm not mistaken you just had a reactive ELISA. You need to have it confirmed with a WB, until then it cannot be said for sure whether you're infected or not.

Second: do not panic. No matter what's the final result of the WB this is not the end of the world.

I've been there, all of us here have, and though it feels totally overwhelming in the beginning, things do get better.

Try not to worry about seroconversion or other symptoms. In the worst case, you just got infected, so the virus has not made real damage to your immune system yet, and prognosis right now with current meds is really good, you can live a normal life no matter what the result of the WB is.

I'm sending you a big hug!
Title: Re: Help... I just got my result...
Post by: prayerblue on September 18, 2008, 07:07:06 pm
That's kind of you to say, it really is... I tend to want to think that way, but everyone at the clinic said it was a done deal just like they said to my b/f (who is positive...) AND she confirmed the weight loss to be a huge indicator... also said my throat was real red and that she couldn't find any nodes that were obvious...

I just would like to say I need some friends right now... cause I just can't fight this alone, and right now I feel really weak... She also gave me the mother of all swabbings down there... God, that hurt!

Point is... I just don't want to die of HIV... I want to live a normal life... anyone think that's hard to do?
Title: Re: Help... I just got my result...
Post by: loop78 on September 18, 2008, 07:19:59 pm
Well, you had a positive ELISA, so it's likely you're infected. However that "likely" is not "100% sure" until the ELISA is confirmed with a WB.

Symptoms are not an indicator of anything, blue. Specially when, as you are, someone is suffering from stress and anxiety. Do not beat yourself up, you'll be ok in any case.

It's a good idea to be with friends meanwhile, and do not let yourself fall into irrational thinking... People who become infected nowadays have a great prognosis and can live a normal life.

Hugs!
Title: Re: Help... I just got my result...
Post by: prayerblue on September 18, 2008, 07:24:04 pm
Sorry to ask this, but is it irrational of me to think my days are numbered as a result? Seriously, it's all that goes through my mind and the fact I only have insurance til 25 (and then won't qualify after...) scares the hell out of me...
Title: Re: Help... I just got my result...
Post by: komnaes on September 18, 2008, 08:33:30 pm
Hi Blue,

All of our days are "numbered", it's just a matter of how big or small that number is for you. With new meds, statistically the average "number" has increased significantly; but no one can know what's that number for me, for you, but not freaking out and start taking care of oneself seems to help.

I would not go as far as saying that it's a "done deal", but while there's a chance of a false positive no matter how small it's, they'd still need to confirm your status with a WB test. And frankly I think it's inappropriate for that person (the "she" you referred to) to say that the weight loss is a "huge indicator". If she's not a qualified doctor, she's in no position to make that call, consider the clinic has only done one ELISA test for you.

You'd need to be more specific about your insurance issues - I am assuming you're in the US; there are many folks here can offer more advises on getting assistance and the right medical attention. And there are many support groups/organizations too.

Hugs, Shaun
Title: Re: Help... I just got my result...
Post by: prayerblue on September 18, 2008, 08:50:23 pm
I mean I won't have insurance after I'm 25 cause my mom's work lets me ride on as a student... But I guess that's the least of my worries... Gosh, to be honest, komnaes, I was a little worried when I read your CD4 thing is 400's just after conversion... does it slip real fast?

I'm sorry... just really, really, really terrified right now... I'm 23 right now and so afraid of dying in general, but that I have what is seen as either terminal or chronic illness is scary to me.

I'm in Texas... what good places for advice and support can I find, or point me to where I can find them?
Title: Re: Help... I just got my result...
Post by: Assurbanipal on September 18, 2008, 10:03:34 pm
Hi prayerblue

Try not to worry a lot about the long term future.  A lot of the scariest things you have read about living and dying with HIV apply to how things were in the past or to people who didn't realize they were infected for years.  The newer drugs and treatments are really much improved.  Recent studies have shown that life expectancy is pretty close to normal for people in the West who find out they are poz relatively soon after infection.

http://forums.poz.com/index.php?topic=21859.msg279890#msg279890

In fact, the chance of dying in the first 5 years no different from the general population, and for years after that the additional risk due to HIV infection is very small.  So relax and take it slow; you have plenty of time to figure out what the next steps are.  Your most important things to worry about right now are finishing up your testing and, if poz, establishing a relationship with a doctor you can trust.

You may want to take a break from HIV for a week or two -- but when you are ready to read more, the lessons on this site are great.
http://www.aidsmeds.com/articles/Introduction_4702.shtml


Good luck to you
Assurbanipal

Title: Re: Help... I just got my result...
Post by: hotpuppy on September 18, 2008, 11:18:46 pm
Okay, first things first, take a deep breath... scream, cry, get the tension out.

Now, that done, let's just pretend for a second that your results come back poz.  You can expect to live a pretty normal lifespan if you take care of your body, eat right, and dont' fall into a pit of drugs and drunkenness. 

I don't know what part of Texas you are in, but it's a great place to be poz.  Not that I am out recruiting folks... but it can always be worse.  If you are not in a major city, I'd suggest getting to one.  There are alot of poz guys in Austin, Dallas, and Houston.  I live in Houston and have a pretty extensive network of poz guys and poz friendly guys.  I don't tolerate people who have a problem with my poz status, I also don't wear it on my sleeve.  It's a need to know thing, just like my being gay.  You ask, I'll Tell, you bitch I'll tell you off.  Life's too short for me to let someone else bring me down.  Besides I have plenty of guys to date who will send me up and down anyhow!  :)

Your mileage may vary, but I look at being poz as switching dating pools.  Now a month ago I would have told you I wouldn't consider dating a neg guy.  Of course, luck has a strange way of paying me back.... you see I met a really nice, wonderful, and sexy guy last week who is neg and when he found out I was poz he didn't vanish. 

anyhow, there is so much out there for you.  Knowledge is your most important tool.  Don't blindly trust what I say, or what anyone including your doc says.  You need to understand treatment options and implications.  Ask questions, seek answers and make sure you participate.

HIV is more like diabetes than it is cancer.  HIV can kill you if you ignore it, but if you treat it you can have a pretty normal life.

As for insurance, not to worry.  Worst case you will be able to get insurance through the Texas High Risk pool.  You are guaranteed access, even though it's a bit pricey it beats nothing.  If you get a job where they offer insurance you can switch from your mom's insurance to that insurance and they can't reject you.

First things first, If you are poz you need to go to a class that helps you with what you need to know about HIV, treatment, and staying healthy.  Legacy Community Health in Houston teaches a class twice a week.  If you need their contact info I would be happy to put you in touch with Barbara who is the coordinator for the classes.  Just PM me.

Second, my experience with HIV is that it has made me appreciate life more than I ever did before.  It made me acutely aware that life is finite and that each day should be appreciated and lived fully.  I used to be conservative with my choices.  Now I tend to act and do things I'll enjoy just so I can enjoy them.  I'm more laid back with my friends and much more likely to try something new.  In short I'm hellbent on enjoying life and I refuse to let HIV make me miserable.  That's not to say I don't have my ups and downs.  when I'm down I just ask myself what good it will do and set my sights on being in a good mood.

Hopefully your bf will be there to comfort you.  If not, the rest of us here on the forums will give you differing points of view that you can use to make your own decisions..

There are also lots of social things in the poz community.  This weekend is the all Texas poz campout for example.  it's a great chance to go camping in a safe and private environment with other poz guys and relax.
Title: Re: Help... I just got my result...
Post by: komnaes on September 19, 2008, 02:17:51 am
Hi Blue,

Actually my numbers are rather stable (I haven't added the new one that has bounced up a bit). But how I am doing is of course no indicator as to how you are and will be doing. This virus behaves differently in different people, and it's just the way you have to accept it. Meaning - don't compare yourself to others, just FOCUS on yourself.

Again, as Puppy has advised, take a deep breath, follow-up with a WB confirmation test. There are a few fellow Texans here who will be able to point you to resources and support groups that you may need. We have all gone through this and know how hard it is - but trust us, thousands of HIV positive people like me and many here are able to ride it out and carry on.

Hugs, Shaun
Title: Re: Help... I just got my result...
Post by: prayerblue on September 19, 2008, 06:17:46 am
So if this is a terribly recent (July 12) infection, and I just seroconverted, is this where I'm gonna have a long while before it would even progress to AIDS? That's what I'm most scared of, so many places say once you have the virus nothing will stop it from progressing to AIDS...
Title: Re: Help... I just got my result...
Post by: loop78 on September 19, 2008, 06:56:51 am
First of all, chances are you would never progress to AIDS. That's why there is medication and periodic blood tests, to monitor how the immune system is doing on his own to fight the virus, so medication can be started before progress to AIDS happens. Nowadays HIV only progresses to AIDS if not treated properly.

Anyway, the average time from infection to AIDS is said to be around 8 years in absence of medication. Your mileage may vary, though.
Title: Re: Help... I just got my result...
Post by: tag_man08 on September 19, 2008, 07:41:41 am
I've been positive for a year now.  The best advise given to me was to not change anything.  Continue to be YOU.  Its gonna take some time to settle into this new diagnosis, but every day you will get up and continue.  If you need 30mins to cry about it, then cry.  Each day will go by and you will cry less until you wake up and look in the mirror and see the same person as you were before your diagnosis.  Followup with your doctor every month and when the time comes for you to consider meds then he/she will let you know.  Remember there is a great deal of support here for you.  Look for a mentor in the http://mentor.poz.com   

It sounds like you would benefit from talking more with someone how's been around >20years with HIV.  One of my best friends was there for me when I got my results and he helped me out alot.  He has been around 21years dealing with HIV (He became HIV+ around 24.)  I am assuming your boyfriend is recently HIV+ too, so considered a mentor for both of you.   A BIG hug to you....
Title: Re: Help... I just got my result...
Post by: prayerblue on September 19, 2008, 08:14:07 am
Thanks, guys... I just need to figure out what to do... even this minute, I feel my stomach is in knots and like I'm paralyzed with fear...
Title: Re: Help... I just got my result...
Post by: RapidRod on September 19, 2008, 09:20:31 am
The first thing you do is get a confirmative test done. Until then you are not considered positive.
Title: Re: Help... I just got my result...
Post by: jennynyc7 on September 19, 2008, 10:19:52 am
I was told that too...unfortunately all it did was get my hopes up. I know you mean well Rod and are just giving good info. I got one of my tests done at the health dept and they do WB there, actually everywhere I went to get tested, which was quite a few places, automatically did a WB. So when people told me that I needed a confirmative test to be sure, I got so excited, when in actuallity the confirmative test had already been done. I remember calling all the testing sites and being crushed when they said, yes mam, an Elisa is always followed up by a confirmative western blot (I am only speaking about KY). Anyway, not trying to be a downer, I am always optimisitc, so I urge you to be, but also don't get overly excited, you will only be setting yourself up for possible heartache.
Title: Re: Help... I just got my result...
Post by: Ann on September 19, 2008, 10:45:11 am
Jenny, unfortunately, not every testing center confirms with a WB before informing the patient that they tested positive. Blue does need to find out if one has been run. If he was tested with a rapid blood or saliva test, chances are that he still needs to have a WB to confirm the diagnosis. He hasn't said what sort of test was run so it's good that it has been pointed out to him to make sure he's been confirmed via a WB.

Blue, have you had WB confirmation? False positive ELISAs can and do happen. Good luck.

Ann
Title: Re: Help... I just got my result...
Post by: prayerblue on September 19, 2008, 10:58:34 am
They sent off for one, this was at a Planned Parenthood. It was a uni-gold rapid 10 minute test... I just feel ill in my stomach and that my life is a number of weeks or days now... sorry, I know I'm wavering but it's hitting me when I was already feeling ill...
Title: Re: Help... I just got my result...
Post by: RapidRod on September 19, 2008, 11:03:16 am
As you were already told a positive test has to be confirmed before you are actually confirmed positive.
Title: Re: Help... I just got my result...
Post by: Ann on September 19, 2008, 11:08:02 am
They sent off for one

I take it you mean they sent off for a WB? When do you get the result?
Title: Re: Help... I just got my result...
Post by: prayerblue on September 19, 2008, 11:11:13 am
She said next Friday... I guess what concerns me is there was no counseling or anything, and they just told me I had it and scooted me out after... and no info on what to do or how I can keep healthy and so I'm so afraid of dying early.
Title: Re: Help... I just got my result...
Post by: Ann on September 19, 2008, 11:18:08 am
Look mate, you're not going to die tomorrow, not because of hiv anyway.

I would advise you to see if you can't find some counseling independently while you wait for the WB result - or possibly go somewhere else where you can get your result earlier. Until you have confirmation, you aren't considered hiv positive.

Go to http://directory.poz.com/ and find another testing center near you - and find your local ASO so you can find someone to talk to face-to-face.

Good luck.

Ann
Title: Re: Help... I just got my result...
Post by: Miss Philicia on September 19, 2008, 11:21:16 am
I feel my stomach is in knots and like I'm paralyzed with fear...

Which is why you're not eating, and why you've lost weight.
Title: Re: Help... I just got my result...
Post by: prayerblue on September 19, 2008, 11:35:57 am
When I do a search, a few pop up but I've no idea which are counselors and most seem like testing centers... Will everyone get KS and OI's as a result of being positive? Is medicine eventually not working inevitable?
Title: Re: Help... I just got my result...
Post by: Miss Philicia on September 19, 2008, 11:46:58 am
Will everyone get KS and OI's as a result of being positive? Is medicine eventually not working inevitable?

No and no.

I thought you said your boyfriend is positive?  Where is he going for counseling, etc.?  You are over-worrying yourself with these incessant questions.
Title: Re: Help... I just got my result...
Post by: prayerblue on September 19, 2008, 12:48:38 pm
He's going somewhere here in town, but he didn't get counseling as far as I was aware... just a few blood tests... Sorry, I really am worried about dying...
Title: Re: Help... I just got my result...
Post by: Miss Philicia on September 19, 2008, 12:56:58 pm
He's going somewhere here in town, but he didn't get counseling as far as I was aware... just a few blood tests... Sorry, I really am worried about dying...

Posting obsessively on an internet message board is not going to help you resolving the fact that you're not 100% sure that you're even infected (as stated REPEATEDLY above you need the WB results).

Again, you repeatedly complain about "being alone" but you have a POSITIVE boyfriend.  I sure wish I'd been in that position when I tested positive 15 years ago.

What does he say about this situation?
Title: Re: Help... I just got my result...
Post by: jennynyc7 on September 19, 2008, 01:18:38 pm
Were'nt some, if not all of us in his same position long ago, or maybe even just recently, like me?  Waiting on the results of an HIV antibody test alone is stressful, let alone waiting on a confirmatory test when you know that you had a real risk. Again, since I am so new, the feelings I had during that two week period of uncertainty was worse than getting the news itself. Nobody (the medical personnel) could offer me any information and all I wanted was to talk to someone who knew about HIV/AIDS firsthand (I did not find this site at that time) to ease my mind. I know I am "nobody" here and am gonna get some slack for posting this but it really bothers me how some of us have a little less compassion in a real time of need. Is this forum here to limit the amount of questions someone may ask, to berate someone if their question seems unreasonable or is it here to be a pillar of strength, of knowledge and of some compassion for those reaching out to us?  Myself, I hope to be of any help, as little as it may be, to anyone, no matter what they ask and how many times they ask it. I feel that is what I am here for.

J
Title: Re: Help... I just got my result...
Post by: atlq on September 19, 2008, 02:20:12 pm
When I do a search, a few pop up but I've no idea which are counselors and most seem like testing centers... 

Blue,

Then give them a call and ask.......waiting for confirmation is hard, believe me we've all been there. But spending the time productively (seeking out some counseling etc...) is going to be better for you and make the wait shorter.
Title: Re: Help... I just got my result...
Post by: RapidRod on September 19, 2008, 03:13:25 pm
jennynyc7, maybe it would help if you read the posters previous posts in the "Am I Infected" forum before you go jumping the gun.
Title: Re: Help... I just got my result...
Post by: Miss Philicia on September 19, 2008, 03:20:49 pm
jennynyc7, maybe it would help if you read the posters previous posts in the "Am I Infected" forum before you go jumping the gun.

Yep.  That's exactly what I did before coming into this thread. 
Title: Re: Help... I just got my result...
Post by: Miss Philicia on September 19, 2008, 03:35:40 pm
prayerblue, you said you live in Texas but that's a VERY big state -- if you can tell others what large city you live in or near that would assist others in locating an ASO that can better assist you.  We have board members that live in about every large metro area of Texas.
Title: Re: Help... I just got my result...
Post by: jennynyc7 on September 19, 2008, 03:48:10 pm
Yes, I read his previous posts, sure he asked several questions, some even being off the wall, however, when you aren't thinking straight because of a bad situation, sometimes you don't think rationally, that is what we call fear. Fear does strange things to people. Bottome line is, his partner is confirmed positive and he has a positive elisa reaction, and yes he is not technically poz until he is confirmed but come on. I did the same thing, I got sick in january, got tested, it came back indeterminate, my fiance got tested and was poz and my dr's said for me to test again at 6wks. Sure that is what all the "books" say, "don't consider yourself pos until a WB confirmatory",  but let's be real. I KNEW it was not a freak coincidence and I don't think this guy think so either. He is, and has been coming here looking for help, as absurd as some if the help he is asking may be. I know that before I was officially diagnosed, NOBODY would see me until I had it documented on paper, so there I sat, scouring the internet looking for answers. I am sure if I would have joined this group I would have come across as "annoying" as well because I could not think straight. I completely understand these kind of responses in the Am I forum but here? Anyway, I am getting off of my soap box now.

j
Title: Re: Help... I just got my result...
Post by: atlq on September 19, 2008, 04:05:05 pm
? Anyway, I am getting off of my soap box now.

 


....so maybe we can get back to answering the original poster?.... Just sayin'....
Title: Re: Help... I just got my result...
Post by: prayerblue on September 19, 2008, 05:43:39 pm
atlq- thanks for redirecting back to the topic...

philly- I'm in the San Antonio metro area... there's a specialist hospital in Austin, but that's too far for me :( so I'd love to know what to do from some of the Texan members...

jenny- thanks... you made me smile a bit, actually. I hope to talk more with you, because even just 24 hours in you've given me some hope and perspective.
Title: Re: Help... I just got my result...
Post by: prayerblue on September 19, 2008, 07:46:36 pm
oh, and guys... is it true if ARS hit you hard you'll progress quicker naturally? that's what i'm most afraid of, or that i have a hard strain to treat...
Title: Re: Help... I just got my result...
Post by: atlq on September 19, 2008, 07:58:50 pm
oh, and guys... is it true if ARS hit you hard you'll progress quicker naturally? that's what i'm most afraid of, or that i have a hard strain to treat...

No. I went through a a pretty bad seroconversion and a decade an a half later ( as I remember), am here, fine, and typing away. You are not even sure yet that you are positive. Nothing is going to happen to you between now and next week when you get your results.


Title: Re: Help... I just got my result...
Post by: prayerblue on September 19, 2008, 08:04:13 pm
thanks atlq... really... i guess it just scares me to read about liver or renal failure, KS, OI's, pills being less effective, classes of pills no longer working... etc... but my docs said i need to research, so where do i start that won't scare the shit out of me?
Title: Re: Help... I just got my result...
Post by: atlq on September 19, 2008, 08:10:56 pm
Why in the world would your doctors suggest you "research" the topics you have mentioned when

1) You are not yet sure you are positive.


As with all things in life, one step at a time. If, If, your result is confirmed you will have plenty of time to research things...you have a bigger worry this week...its getting a grip on your obsessive fear.  And the first step in that process is to stop randomly reading HIV stuff on the web. Go do something else this week....seriously.
Title: Re: Help... I just got my result...
Post by: BT65 on September 19, 2008, 08:26:01 pm
thanks atlq... really... i guess it just scares me to read about liver or renal failure, KS, OI's, pills being less effective, classes of pills no longer working... etc... but my docs said i need to research, so where do i start that won't scare the shit out of me?

Prayer, I've been on meds for HIV and lots of other things for years and years and don't have problems with my liver or kidneys.  I have no idea why you're fearing things that are so out of range in the first place.

Let's wait to see how your confirmatory test is and then talk.  Like Atlq said, focus on something else this week.  I've been positive since 1989 and don't obsess over stuff like this.  You shouldn't either.
Title: Re: Help... I just got my result...
Post by: prayerblue on September 19, 2008, 08:34:23 pm
Thanks, Ms. Betty... sorry to seem like I'm too anxious, I just really want to not get AIDS... and depending on who I talk to, the answer is yes you will or no you can stop it from getting that far...
Title: Re: Help... I just got my result...
Post by: prayerblue on September 19, 2008, 09:03:01 pm
Sorry to ask a weird question... but from looking in *the Just found out forum*, there's not a ton of recent posts like the "am i?" forum... was I just that f*in' unlucky or am I just reading too much into the fact that there's not a bunch of posters in this forum? I guess what I'm asking is, is this really that hard to get or is it just that people don't necessarily turn here or other forums for support?
Title: Re: Help... I just got my result...
Post by: auspoz on September 19, 2008, 09:10:59 pm
Hi Prayer,

I've been where you are now. It's not a nice place to be. When I was dignosed I was convinced that I had cancer, thrush, neuropathy and I could 'feel' the virus inside me. I lost a ton of weight, and no matter how many times people told me I was OK, I was never convinced. My mind raced out of control. But it was anxiety that was causing all that, not HIV. Really really bad anxiety, yes, like I'd never experienced before.

And gradually, I relaxed bit by bit. I saw that I was still the same, just, well, different. And all of us come to HIV with different fears for many different and complex reasons. One of my favourite quotes is "prejudice rarely survives experience". That was certainly true for me. Fear can be very powerul, but so can inner strength in the face of our fears.

Somehow I managed to go on, and you can too. I guess that's how life is. I don't know how I achieved what I did, but it is possible to move forward. And once you get your WB test, you'll know what to focus on, either way. You have a partner and you're seeking help- you're doing all the right things. Hang in there and soon you'll see that you're managing, then coping, then hopefully moving forward.

In the meantime, try to think rationally, relax, understand what it means to be diagnosed in 2008 rather than 1988, and keep seeking help. That's how you'll find the inner strength that you're having trouble finding at the moment.

In the end, you will be OK.

Auspoz
Title: Re: Help... I just got my result...
Post by: atlq on September 19, 2008, 09:12:44 pm
Blue,


Sorry to ask a weird question... but from looking in here, there's not a ton of recent posts like the "am i?" forum... was I just that f*in' unlucky or am I just reading too much into the fact that there's not a bunch of posters in this forum? I guess what I'm asking is, is this really that hard to get or is it just that people don't necessarily turn here or other forums for support?

What are you talking about? I count no less than 12 people who have offered you advice and support for your question since yesterday....Could it be that you just don't want to hear what you are being told?.....
Title: Re: Help... I just got my result...
Post by: prayerblue on September 19, 2008, 09:17:29 pm
Oh, atlq, no I meant posters in the FORUM here, "Just found out..."

As in, I feel like there weren't a lot of people finding out lately cause they were not infected and I was just unlucky that the one time I did have sex...

Title: Re: Help... I just got my result...
Post by: prayerblue on September 19, 2008, 09:28:00 pm
aus-

thanks... that does make me feel a little better, because people told me i was so anxious and i said they were wrong i wasn't feeling anxious... maybe it was just so much fear i was unaware of the depths of this anxiety... i too feel worry about the neuropathy, tingling in my legs, and worry about things like dementia or progression.

but i guess i just need some guidance, even if just people telling me nothing is set in stone about me dying. i swear to all who read this i appreciate all that i've been told about a good outlook... i just fear that i'm "wasting" right now since i lost a ton of weight and there was weird spots on my arm...
Title: Re: Help... I just got my result...
Post by: auspoz on September 19, 2008, 09:40:06 pm
Prayer,

You are dealing with something new. It takes time to adjust. Some more than others, and to varying degrees.

Hang in there. You're just confused at the moment.

Auspoz
Title: Re: Help... I just got my result...
Post by: prayerblue on September 19, 2008, 09:50:06 pm
hey, aus... sorry to bug you, but just curious... how did you deal with the initial shock? how are you coping, and are you thriving? and i guess, just curious, the aus is not for "austin" like texas is it? lol just a shot in the dark i guess...
Title: Re: Help... I just got my result...
Post by: BT65 on September 19, 2008, 10:49:13 pm
Sorry to ask a weird question... but from looking in *the Just found out forum*, there's not a ton of recent posts like the "am i?" forum... was I just that f*in' unlucky or am I just reading too much into the fact that there's not a bunch of posters in this forum? I guess what I'm asking is, is this really that hard to get or is it just that people don't necessarily turn here or other forums for support?

Prayer, I've responded to many posters here in this part of the forums.  The reason it doesn't get as many posters as the "Am I" is most likely because  most people in the "Am I" don't test positive.

Having HIV is not a punishment.  No one is any more lucky or unlucky than the next person.  HIV is a virus.  Viruses are transmittable.  You still aren't 100% sure yet that you are HIV+.  Just relax and think of positive ways you can deal with this if your test is positive.
Title: Re: Help... I just got my result...
Post by: auspoz on September 19, 2008, 10:57:45 pm
In the last little while I've been coping OK thanks. I sense that you want to know when things might feel 'normal' again. I'm now convinced that that is a very individual thing.

So to answer your question about how I dealt with the shock. Not very well. I was advised to take time off work and give myself space to deal with the news. In retrospect I probably should have. But, I'm not sure that it would have helped me. Having to go on, and being forced to find a way to deal with it was possibly what I needed. I tried to think that eventually I would feel better and that the shock would wear off. Makes perfect sense but though it's hard to believe at first, it is true. I did go on meds for anxienty, then depression, but I'm wondering if I should come off those soon.

I guess the thing that helped me the most was telling my parents. That's when things changed for me. They could not be better about it, and they are my best support. But, again, that's going to be a very individual thing too.

At this stage I think I'm going OK. It's getting easier, I'm more focussed, and I am realising that life goes on. Am I thriving yet? No, but I'm planning to. There's now space in my mind to let more productive thoughts enter my head, and I'm going to just do the best I can at being healthy, and finding out what really makes me happy.

I'm an impatient person by nature, and wanted things to be all fixed or better fast. It doesn't work that way, and we need to be patient with the process. I mean I'm talking about having to really process the statement "be kind to yourself". I had to figure out what that meant.

Don't jump the gun. Be in the now. You need to get the WB results.

Oh, and no, not Texas, Down Under.

Auspoz
Title: Re: Help... I just got my result...
Post by: prayerblue on September 19, 2008, 11:00:53 pm
Thanks aus :) I think I'll just have to keep my life going as well...
Title: Re: Help... I just got my result...
Post by: prayerblue on September 20, 2008, 12:35:42 pm
Sorry everyone, and to anyone who's already tired of me...

The inescapable bad thoughts are finally here, and I feel alone and like I'm already dying and that I'll get AIDS and that I'm already there cause I'm currently really chubby and so at a huge disadvantage... and worse, the hotlines aren't open on weekends... I feel like I can't get out of bed for fear of an OI...
Title: Re: Help... I just got my result...
Post by: Assurbanipal on September 20, 2008, 01:57:34 pm
Hi prayerblue

Perhaps now is the time to shut down the machine and take a good long (all afternoon) walk.  I always find that walking helps me to get my thoughts in order and helps me sleep better too.  And its a positive way to improve your health.

BTW -- being chubby is not a sign of being nigh unto dying of AIDS -- rather the reverse.  But even before that discussion, as others have pointed out, you appear to be focusing on symptoms that you are unlikely to get if you start HAART under the care of a good doctor -- and you are unlikely to need to even begin HAART for years.

Take care
A

Title: Re: Help... I just got my result...
Post by: Miss Philicia on September 20, 2008, 02:01:35 pm
Prayerblue, is your boyfriend around today?  What does he say about your constant worries about HIV related things which are irrational and unfounded?  I would think that since he just became positive this years that he would be very insightful one on one.
Title: Re: Help... I just got my result...
Post by: prayerblue on September 20, 2008, 02:03:25 pm
he just got here a while ago to keep me company. but he's not started meds or anything he just went to the doctor to do tests to find out what to do next i guess... which is why i'm scared cause so much is up in the air...

tried looking at the mentor site... doesn't seem to be anyone in texas who's still active, much less willing to take on a newly infected... i dunno how that works, maybe i messed up on the search and i had been under the assumption someone on the administrative side did the matching...

i'll be honest... i could use some friends on here, and someone pm-ed me a great article describing how some of the guys on here form even offline bonds of friendship and support... how can i get that? i need something to look forward to, people to show me how they did it... is that too much to ask for? a couple of great responses like jenny and loop gave me some ambition to move forward, but i'd love to make friends of y'all...
Title: Re: Help... I just got my result...
Post by: prayerblue on September 21, 2008, 08:22:07 pm
I just wanted to say thanks to all those who've sent kind messages and PM's, and that I feel quite a ways better this evening. Might I ask, though, to all of you who read this... how did you personally move past the fear of what's next? I guess... how do you move forward from the emotional terror?

And I was terribly sad to see some posts in the living forum of people with such good hearts and minds not doing so well physically... in fact, one that from pics looked amazing and vibrant but said they were not doing so well right now... is this more common than not, or is that only when it's progressed to AIDS? I apologize if any of this is alarmist or naive, I just get faced with the fear of where can this go if I don't stop it...

I think what terrified me is seeing someone put a seroconversion in one year and the very next year an AIDS diagnosis... how is that even possible? Please, everyone, don't be mad at me... my therapists said I should try to at least be informed, is there a way to do that anyone else would advise that doesn't inspire such fear?
Title: Re: Help... I just got my result...
Post by: Assurbanipal on September 21, 2008, 09:05:55 pm
And I was terribly sad to see some posts in the living forum of people with such good hearts and minds not doing so well physically... in fact, one that from pics looked amazing and vibrant but said they were not doing so well right now... is this more common than not, or is that only when it's progressed to AIDS? I apologize if any of this is alarmist or naive, I just get faced with the fear of where can this go if I don't stop it...

There are some people who are going through very tough times and they often log on to share their stories or to see if others can help them.  But one shouldn't try to infer the average experience of everyone with the virus from a support board where people log on to share problems -- that's a logical fallacy that ignores the fact that those who are going through tough times may be more likely to post than others.

Furthermore, you shouldn't assume that you are likely to have the average experience of people on this board -- after all, your infection (if you are infected) was caught early; you live in a time when there are lots of drug alternatives and knowledge of how the disease works is improving.  Furthermore, that knowledge has improved not only the number of drugs, but how to make the side effects less likely.  Kaletra for instance is now prescribed mainly in tablet form which has reduced the incidence of its most noted gastrointestinal side effect dramatically compared to the old capsule form. 


I think what terrified me is seeing someone put a seroconversion in one year and the very next year an AIDS diagnosis... how is that even possible? Please, everyone, don't be mad at me... my therapists said I should try to at least be informed, is there a way to do that anyone else would advise that doesn't inspire such fear?

Try reading the lessons on this site
http://www.aidsmeds.com/articles/Introduction_4702.shtml
or the ibase guide for a UK view
http://www.i-base.info/guides/index.html

Regards
A


Title: Re: Help... I just got my result...
Post by: prayerblue on September 21, 2008, 09:09:51 pm
Thanks, Assurbanipal. I guess I felt sad about it because they seem like people I'd love to be like, personality wise, and just to hear that even their great spirits are struggling with their bodies at the moment is unfair... but I guess, such is life... and all I can do is pray they heal and get back to living well and safe.
Title: Re: Help... I just got my result...
Post by: prayerblue on September 22, 2008, 11:58:32 am
My doc gave me some inspired hope that it could have been wrong, but I'm trying to figure out how to interpret my CBC's?

Glucose was 99, of expected 65-100
"Bun" was 16, out of 8-25
Creatinine was .9 out of .8-1.4
Calculated "Bun"/Creatinine was 18 out of 6-28
Sodium was 139 out of 133-146
Potassium was 4.2 out of 3.5-5.3
Chloride was 106 out of 97-110
Carbon dioxide was 20 out of 18-30
Calcium was 9.7 out of 8.5-10.5
Protein was 7.9 out of 6.0-8.4

Ok, to skip down, the red flagged section is "Hematocrit" is 49.5 out of 37-49, does that indicate some infection? She said it was cell size... "MCH" was 26.8 which is just below the recommended 27-24... and "MCHC" was 30.9, so below the numbers recommended of 32-36.

Lymphocytes seemed low, at 24... the recommended was 19-48... so that's why I got scared, isn't that an indicator of low lymphs due to being destroyed? 6 monocytes, whatever that is, out of 3-11 being normal, and 0 eosinphils... which, although it says 0 is normal up to 7, what does 0 mean?

Sorry... I guess I'm making a mistake coming here and whining like it'll change anything, but I don't see my counselors til later in the week and a bunch of you guys here said not to give up hope on a false positive and subsequent negative WB... just wanted to know if any of this helped that fact pattern along... cause I'm not pregnant, that's for sure, so I can't rely on any cause I can think of for a false +...
Title: Re: Help... I just got my result...
Post by: Miss Philicia on September 22, 2008, 12:10:56 pm
I'm confused.  Are you saying you went to the doctor's office today but did not have a WB done, yet you had "other" blood work taken?  And what do you mean exactly by "counselors"?
Title: Re: Help... I just got my result...
Post by: prayerblue on September 22, 2008, 12:13:12 pm
Sorry. To clarify:

Went to a doctor for nausea on Tuesday. Blood for CBC was taken.

Took a test at advice of counselor Thursday.

I'm trying to see what the CBC means... i guess that sounds desperate to many, but I'm morally scared right now.

And I have a psychiatrist and a psychologist, I just say counselor for the psychologist.
Title: Re: Help... I just got my result...
Post by: Miss Philicia on September 22, 2008, 12:31:24 pm
OK.  So when are you having the WB done?  I would think that should be the next stop, if I'm not mistaken.
Title: Re: Help... I just got my result...
Post by: prayerblue on September 22, 2008, 12:45:00 pm
Clinic called, said results to be in this Friday... but I guess I was wrong to have hope in the CBC as a counter-balance or maybe it is... I'm struggling with some severe depressive thoughts but wanting so hard to be ok again... I guess chalk it up to immaturity...
Title: Re: Help... I just got my result...
Post by: beauaustintx on September 22, 2008, 12:54:19 pm
Blue...you really need to chill!  Life isn't over.  You're going to make yourself sick with all the worrying you're doing.  I've been poz since 1991 and I'm still alive and kickin'.  Be patient...listen to your doctor...accept the information you are getting from those on this forum.  We've been there, We know what you're feeling, thinking, etc.  You're close to Austin and there are a lot of resources available.
Title: Re: Help... I just got my result...
Post by: prayerblue on September 22, 2008, 12:56:36 pm
Thanks, beau... I am trying so hard to stay calm... I really want to be ok and live long and prosper... just feels so scary and lonely right now...
Title: Re: Help... I just got my result...
Post by: BT65 on September 22, 2008, 02:26:18 pm
Blue, I used to obsess over the little things on a lab sheet also, but eventually I had to live with the results being "within normal  limits."  I somehow thought I was different than everyone else who had "within normal limits" results.  I had to just accept things is what I'm trying to say.

And all of your results were normal.  Even the .2 difference in the MCH is not terribly out of range.  What I'm trying to say is, you're right where you need to be.    Continuing to think you're sick will end up you, well, sick.  And that will be as a result of emotions, not the HIV. 

Maybe you should call your therapist's office to see if you can get in sooner.  And you should also probably get ahold of the local ASO (Aids Service Organization) to connect with a counselor there.  They can go over your labs with you, number by number, to assure you of your good results and lay any fears to rest.  Take care.
  Luv,
Betty
Title: Re: Help... I just got my result...
Post by: prayerblue on September 22, 2008, 02:35:42 pm
You're right... guess I was just trying to find some hope it was still a negative somehow through my blood at the time of testing thereabouts seeming normal since I've no idea what it looks like when conversion happens but I was under the impression more would be "off..."
Title: Re: Help... I just got my result...
Post by: jennynyc7 on September 22, 2008, 02:53:18 pm
It's funny (well, not really), I did the same exact thing. I couldn't tell you how many times I had a CBC done during my window period. I kept thinking there had to be a clue, that maybe if my WBC was high enough then there would be no way I had any type of illness, that if my lymphocytes were blah blah then blah blah blah. You get the drift.  I mean I scoured every number, page after page after page. So it is normal prayerblue, but in hindsight, not time well spent.  It is easier said than done, I know, but try and relax, and trust me....stay off of webmd, medhelp, askpatient.com etc. Also remember that any inofrmation you read, here or otherwise is only that persons experience out of millions infected/possibly infected and not every situation/side effect/ailment/ is the same. I don't know if you ever watched that mini-series on Showtime or maybe it was HBO called Angels in America about AIDS in the late 80's/early 90's??? I watched it when it was on a few years ago (maybe longer) and got scared poopless, not because I had a reason to be scared but the show was very explicit (yet wonderful). Anyway, when I was diagnosed all I could see in my head was those characters. How frail they were. How miserable. I wanted someone to tell me that I wouldn't end up like that, but nobody could and nobody will-everyone is different, but with meds, as everyone has said, has greatly improved the quality of life. I do not spend my days in bed moaning and groaning, nor am I strapped to the toilet, whether it be sitting on it or hugging it, I go to the gym everyday, work a full time job and raise my two toddler daughters single handedly (not sure if that is how you spell it, but it sounded good!), all the while simply taking 3 little pills every night at 9:30 and going to give some blood every 3 months. Simple as that. But that is my lilfe. Nobody else's. Will I get sick in the future? Will my meds inevitably fail me? Will my cd4's drop? Those are all question that can't be answered. Anyway, I am done rambling. Take Care

j
Title: Re: Help... I just got my result...
Post by: prayerblue on September 22, 2008, 05:54:55 pm
I just wanna die...

The case-worker says it's impossible to prevent the diagnosis of AIDS, just a matter of time...

I looked in my throat... white patch in the very back... I honestly wonder if...

Just wanted to at least say thanks for trying, guys... I know I was a bitch to deal with...
Title: Re: Help... I just got my result...
Post by: Assurbanipal on September 22, 2008, 06:11:52 pm
Your case worker is full of (ahem) BS.  (Need a few doses of Kaletra here   :) JUST KIDDING)

The CDC does not agree with him/her.
" As treatment has become more available, trends in new AIDS diagnoses no longer accurately represent trends in new HIV infections; these data now represent persons who are tested late in the course of HIV infection, who have limited access to care, or in whom treatment has failed."


http://www.cdc.gov/hiv/topics/surveillance/

HAART can be quite effective, especially for the newly diagnosed.


Title: Re: Help... I just got my result...
Post by: prayerblue on September 22, 2008, 06:16:35 pm
He told me that it was inevitable... he tried to sugarcoat it with "but they even have AIDS and can live for a few more years" but he made it seem unstoppable to that point... I swear I don't mean to be dramatic or desperate but I feel so lonely and scared...
Title: Re: Help... I just got my result...
Post by: tag_man08 on September 22, 2008, 07:11:25 pm
who is your boyfriend talking too...maybe you can both go together....
support was the number one thing I needed when I was first diagnosed...
you really need to talk to someone in person that will be a positive influence right now..
Title: Re: Help... I just got my result...
Post by: prayerblue on September 22, 2008, 07:12:24 pm
he's not in counseling, he doesn't seem to need that... hell, right now i'm desperate for some human contact in general... i just feel i'm a pariah here already...
Title: Re: Help... I just got my result...
Post by: BT65 on September 22, 2008, 07:15:49 pm
I suggest you get a good hobby and quit pondering something that may never happen.  It never does me any good to quash over things not in my control.  Neither will it you.
Title: Re: Help... I just got my result...
Post by: prayerblue on September 22, 2008, 07:19:20 pm
Betty, if anyone here... your story made me see the ability of a human to overcome the disease and live on... I look up to all of the people on here as survivors but my God, yours makes me so hopeful to be like you and be strong! But what is it that's out of my control, and which thing may never happen? The AIDS? I appreciate you being so kind as to still talk to me, I know I'm a mess right now...
Title: Re: Help... I just got my result...
Post by: Assurbanipal on September 22, 2008, 07:44:26 pm
Prayerblue

You are not guaranteed an eventual AIDS diagnosis.  And...
1) Even before HAART, the estimated average time from infection to AIDS was a decade
2) HAART generally slows things down
3) Most folks who start HAART at a higher CD 4 count and are able to stay on it will have pretty low risks of developing AIDS -- for instance the CDC treatment guide shows a 3 year risk of 3-5% for people with low viral loads (Table 4a)
4) Even a diagnosis of AIDS is not as bad as you think it is -- in the US you are automatically diagnosed with AIDS if your Tcell count drops below 200.  You don't need to be sick or have any AIDS defining illnesses.

Step back for a minute and ask yourself "How much of his/her time does my caseworker spend with the people that are not having problems?  Is it possible his/her worldview is a little skewed?"


Be of good cheer.  Honest -- life won't be perfect -- but was it going to be perfect anyway?
A
Title: Re: Help... I just got my result...
Post by: prayerblue on September 22, 2008, 07:47:47 pm
Thanks, A.

Everyone here is really so kind... well, I hope eventually you guys remember me less as the paranoid scared kid and perhaps as a friend to trudge forward with, arm in arm...

EDIT: so really and truly? You can live long without AIDS and just be "positive" and still be ok? Do you all think, hopes of a cure set aside for the moment, there will be more advances to prevent the progression?
Title: Re: Help... I just got my result...
Post by: BT65 on September 22, 2008, 11:16:14 pm
Prayer, before replying concerning the things you're enquiring about, I have to ask.  Did you get the confirmatory test results?  And if so, when did you get the result and was it indeed positive?  We really do need to know this.
Title: Re: Help... I just got my result...
Post by: hotpuppy on September 23, 2008, 08:09:44 am
Darling:  First... it takes a LONG time for HIV to wear you down.  When it does, rest assured HIV will not kill you.  Something else will, like the flu, pneumonia, staph, etc.

Second, get a new counselor.  This one seems content to scare the hell out of you and you need to tell him or her to be compassionate and kiss your ass.  He or She is giving you BAD information and needs to take a trip to the CDC website and do some basic reading. They are giving you 1990 information, not 2008 info.

Third: Did you call Barbara Walker at Legacy Community Health Services? I sent you her name and number.  She is a HIV Education Counselor for Houston.  She can help you find her San Antonio counterpart.  Two other places to look, your country hospital district, and your local gay community.  Don't worry about them being gay.  Honey, we are all in this together.  I participate in a drug study that requires me to go to Thomas Street Clinic run by Harris County Hospital District.  Thomas Street is an old 4 story community hospital that has been converted to an HIV outpatient clinic.  I can't tell you how empowering it is to go to a 4 story building that does NOTHING but treat HIV.  Seeing all the people who treat HIV and all the other people who are living with it opened my eyes.  What's more fascinating to me is how everyone there runs the gamut.  From straight and with their mother, to bringing their newborns and being there with their boyfriends.  You need a similar experience where you can see lots of other people successfully living with HIV.  What's more, look at this forum.  There are people on here who have had HIV for over 20 years.

fourth:  It's ultimately your decision.  The way you get past it is that you get mad. YOU decide that you aren't going to let a stinking virus run your life.  At that point you take charge.  You eat right, get healthy, and learn as much as you can.  You talk to a counselor about what bugs you, you make fun of the virus, you live with it, not under it.

Now, find that AIDS/HIV Service Organization and let me know how it goes.  Barbara will bend over backwords to help you find them.  If she doesn't answer, just leave her a message. Remember she works for a non-profit and they work her 60 hours, pay her for 35 and tell her like she's lucky to be there.  That's how most non-profits treat their staff.  Of course in many of our cases, we are lucky to be here.  Lucky we took charge, got treatment, and gained control of our lives. 

Make a plan.  If you are HIV Negative, what will you do differently?  Will you practice Safe Sex?  If you are HIV Positive, what will you do?  You have access to the internet, so you can read here, on wikipedia, and anywhere else. 

Btw, It takes HIV about 10 years to wear you down without treatment.  I know others will argue, but just go with it as a general number.  With treatment you can expect to live at least 40 years.  The key is getting treated, seeing your doctor, avoiding drug and alcohol abuse, and living healthy.

Let me know how your hunt for an ASO goes.  I know there is one in San Antonio.
Title: Re: Help... I just got my result...
Post by: prayerblue on September 23, 2008, 08:21:06 am
The ASO (SAAF) caseworker was the one that told me that... so that's why it scared the heck out of me...
Title: Re: Help... I just got my result...
Post by: Sydney on September 23, 2008, 09:18:01 am
Hi PB,
Another guy from "down under" wanting to reach out and give you some reassurance.  I remember vividly the deadening dread I went through when I got the "ambiguous" test result, and finally the confirmation (it dragged on a bit, and I just didn't want to know).  But I could have sworn I immediately started developing swollen glands, sore throat, night sweats - you name it.  All I could think of was that I was going to die fairly soon.  I read the "stats" and figured I had a max of eight years - and what I feared most was that everyone would know I was dying of AIDS rather than something respectable like cancer. I visited family and friends interstate ("perhaps for the last time"), tidied up the garage, got rid of the porn, and waited for the "Grim Reaper" to come knocking. Every morning I woke up to the dread of it. And time passed with no knock.  How did I get over the terror?  I don't know, I don't think it was anything I did - I eventually just fatigued of feeling scared. And there were days when I was so involved in things I forgot.

I remember it vividly - it was in early 1986 when I was very young (40!).  And here I am, 23 years later, no health problems to date, just about to start treatment, and wondering whether I'll have enough superannuation to get me through to age 80-or-so.

A big hug, and know that we're with you.  Oh - and make sure you plan for the future.  Your best insurance is to fear the worst, on the principle that our worst fears almost never come about ;)
Title: Re: Help... I just got my result...
Post by: Miss Philicia on September 23, 2008, 09:20:33 am
OK.  So when are you having the WB done?  I would think that should be the next stop, if I'm not mistaken.

This is the fourth day and I see little to no movement with this.  Are you making calls bout obtaining this test?
Title: Re: Help... I just got my result...
Post by: prayerblue on September 23, 2008, 09:27:17 am
The clinic said results should be in Friday...
Title: Re: Help... I just got my result...
Post by: RapidRod on September 23, 2008, 09:35:32 am
Did your b/f ever get a western blot test done to confirm his test results? A preliminary test is not conclusive test.
Title: Re: Help... I just got my result...
Post by: BT65 on September 23, 2008, 12:54:46 pm
Prayer, until the Western Blot results are back, I don't think I can be of any more assistance.  You're worrying and groveling over things that haven't happened and perhaps may never happen.  You posted something about meds in "Treatment and Side Effects" and your WB isn't even back.  Cool out and let us know when you get the results.  Thanks.
  Luv,
Betty
Title: Re: Help... I just got my result...
Post by: prayerblue on September 23, 2008, 01:51:20 pm
Rapid- yes, his were confirmed long ago.

Betty- i understand... if it is confirmed... but i wish i had reasonable suspicion that it wouldn't be aside of hope
Title: Re: Help... I just got my result...
Post by: RapidRod on September 23, 2008, 02:14:38 pm
When was he confirmed?
Title: Re: Help... I just got my result...
Post by: prayerblue on September 23, 2008, 02:16:26 pm
Two weeks or so after he/we found out he tested positive via oral swab... they took blood and sent it in and gave him the paper and everything.

There's still some chance mine was wrong... right?
Title: Re: Help... I just got my result...
Post by: Miss Philicia on September 23, 2008, 08:25:25 pm
Rapid- yes, his were confirmed long ago.

By the WB test?  No, that contradicts what you've previously stated.  Furthermore you've nothing in 5 days to get a WB test.

It almost like you PREFER to worry just like in the Am I Infected section.
Title: Re: Help... I just got my result...
Post by: prayerblue on September 23, 2008, 09:19:02 pm
Philly- and I quote (non-edited) post:

"Been trying to be good and not overpost...

His test is confirmed as of today. Now my mind is in fear again, and I just don't know what to do. Told my therapist about the situation before the confirmation and she, while saying she also thinks it's lower of a high risk than just "high risk" is trying to make sure I stay confident. Does the confirmation change anything, really? I don't know... Beyond that, I'm just trying to convince myself not everyone gets HIV from one time with someone who absolutely without a doubt had it at that moment when there was no climax but the precum thing is enough to drive me nuts.

Does your gut feeling change now that it's been confirmed?"

His was confirmed... it's right before the first post from Andy in my Am I? topic. And what I'm saying is the CLINIC said they sent the blood they took out for a western blot... what else was I to do? And I'd love to know what that "contradicts..." guys, please, I'm here to make allies not enemies...

BUT I got some great advice and hope from a counselor and survivor at another ASO here in town, who told me the odds were on my side still to not even need meds yet and that he himself at 30 still had hope to live to 100 (which is a dream I still try to have, even now...) if he can and so I just wanted to say to all of you...

Thanks.

I really hope to make some new lifelong friends here, this is not the end of me...
Title: Re: Help... I just got my result...
Post by: prayerblue on September 23, 2008, 10:47:37 pm
After a meeting with that counselor I spoke of, the world doesn't seem so bad and the imaginary clock on my head doesn't seem to be moving anymore... I think this really is the best time to have it if you have to have it, huh? At least now it seems there's meds and ways to live a normal life and people to look out for each other...
Title: Re: Help... I just got my result...
Post by: prayerblue on September 24, 2008, 12:04:43 pm
Can I just get a show of hands?

I'm apparently causing some controversy inadvertently, and making people upset at me without meaning to. Quite the opposite, I came here to this board after I got my test ("just tested poz" didn't say under it "with confirmation and viral load tests") and got some really kind and compassionate responses from loop, kom, assurbian and jenny to name a few that come to mind.

But rapid and philly seem to have the mentality either I'm making it up or deliberately skirting the issues of my bf's test being confirmed (it was) and that apparently I've taken no steps to find if mine will confirm (the clinic said on Friday it will come in, fingers crossed it might have been a false +) but apparently I'm enemy of the board simply because I've anxiety issues and seem clingy to compensate for the fact I have no friends and that trying to make some here seems like a long-shot because I've a stigma already for "overreacting."

Does anyone really want me to go? Does anyone want me to not message them specifically, or to leave them alone and just go the heck away? I'll accept answers... even people like Betty that inspire me seem to have no patience for me because of the fact I'm not in possession of the letter from the government saying "yes, you're infected." And Betty is the one that gave me the most hope for a long-term, along with Mark and of course the grand poobah Peter...

I want to live, and I want to feel for once accepted not for my flaws but for what I can bring to the table. Anyone want me out of the club still?
Title: Re: Help... I just got my result...
Post by: BT65 on September 24, 2008, 12:09:35 pm
Prayer, no one wants you "out" (not even really sure what's meant by that).  We just want you to quit spending all this time toiling over issues that might not even happen, poz or not.  Of course, if your confirmatory test is +, we'll support you all we can. 

How often do you see your counselor?  Because it sounds like you might benefit from more meetings with him/her than you're having now.
Title: Re: Help... I just got my result...
Post by: prayerblue on September 24, 2008, 12:12:50 pm
I mean out like they want me to go away, like I'm unequal among equals so I should stop being a pest... that made sense in the Am I? forum, but if indeed it confirms I will feel so alone and despondent so I'm trying to cope...

I see a psychologist one day and a psychiatrist another every week... This is a recent, last week event though, so it just started. I'm really trying to get help and be prepared and have hope!
Title: Re: Help... I just got my result...
Post by: Miss Philicia on September 24, 2008, 12:30:47 pm
Prayerblue,  I want to be supportive -- I'm just confused about the WB test as 100% sure you are infected.  I don't know what to make up the fact that you've spent so much time not going and having one done.

That's all -- unless I"m missing one of your post here you've stated you've gotten one, unless I'm mistaken.  Please do not be defensive.

Others have stated the same thing.  It's been almost a week now.
Title: Re: Help... I just got my result...
Post by: Ann on September 24, 2008, 12:32:42 pm
Blue,

What's upsetting people is that you aren't even confirmed hiv positive but yet you've got nearly 90 posts - most of them worrying yourself sick over something that might never happen. People would just like to see you calm down a bit. The time waiting for your WB result would be far better spent - and would go much faster for you - if you stepped away from your computer and went out and did something productive.

It's time consuming to keep answering questions - and frustrating too when the questions might well be pointless in the first place. If you disregard my advice to you to get off your computer, then at least show some courtesy and use your time to read some of the thousands of posts already on this forum - many which deal with the same things you are asking about. And read the lessons too.

You are not the first person to have to wait for a WB result, however, you ARE the first person here to wear the patience thin of so many other members while waiting. If by chance your result does come back positive, you don't want to have already worn out your welcome here. Please consider the feelings of others. We understand you're upset. We get it. BUT, until we know one way or the other, much of this is purely academic.

Take a few deep breaths and go get busy with something non-hiv related. All the fretting in the world is not going to make Friday happen any sooner.

Ann
Title: Re: Help... I just got my result...
Post by: Ann on September 24, 2008, 12:35:53 pm
Prayerblue,  I want to be supportive -- I'm just confused about the WB test as 100% sure you are infected.  I don't know what to make up the fact that you've spent so much time not going and having one done.


I've said similar to you earlier in one of your threads, Blue. You could have gone somewhere other than PP and had a WB done and likely could have already had your results. It just seems like the obvious thing to do when you're freaking out so heavily. I even gave you links where you could find a different testing center and you never even acknowledged my post.

Ann
Title: Re: Help... I just got my result...
Post by: hotpuppy on September 24, 2008, 02:23:57 pm
I'll take Ann's advice a step further.

Blue, you have reached a point where you can only wait for your results.  There are three possibilities, in order of hope.

1. It comes back negative.  What will you do differently in life if this happens?  Are you prepared to commit to using condoms and being safe?  You have gotten pretty close to bein positive at this point.

2. It comes back positive.  Are you ready to take care of your body?  Eat right?  Have a good outlook on life? 

3. It comes back indeterminate.  In this case, you will need to wait.  Probably 30 days before you can retest.  Typically you should think like you are poz at this point, but there are some instances where a WB can come back indeterminate.

now these are not necessarily things that need a response.  I'm just pointing out that you have an opportunity to reflect and think about how you will live under each of these outcomes.  Make a plan, know that it will be okay regardless of which outcome, and then you will be able to exhale and get on with life.
Title: Re: Help... I just got my result...
Post by: prayerblue on September 24, 2008, 02:34:12 pm
Ann-

"Go to http://directory.poz.com/ and find another testing center near you - and find your local ASO so you can find someone to talk to face-to-face."

My response was: "When I do a search, a few pop up but I've no idea which are counselors and most seem like testing centers..." and later, when I did find an ASO in town... "The case-worker says it's impossible to prevent the diagnosis of AIDS, just a matter of time..." BUT I'll have you know they said that PP would send for the WB and thus no further action on my part except for coming in for the (good or bad) news.

But that's just to say I do read and acknowledge what you say. As much a paranoid hypochondriac as I am, I do take every word to heart and especially yours since you had the most optimism (and still seem to have) of my chance to be negative.

Trying to be productive, trying to stay in class and study again... sorry, it's just the lonely thing that keeps me trying to talk to people and yeah, I'm one of those classic cases of needing reassurance in a crisis.

And philly, I meant to say that I didn't "go get one," it's that the PP clinic I went to that took vials of blood for the WB the same say so it was all already in the process. Thanks for the explanation, and I know I'm trying y'alls patience but honestly... I'm the loneliest person right now... and trying to have hope I'll live decades, not months.
Title: Re: Help... I just got my result...
Post by: RapidRod on September 24, 2008, 03:12:07 pm
Seek professional councilling.
Title: Re: Help... I just got my result...
Post by: Assurbanipal on September 24, 2008, 04:25:56 pm
Hey PB

Sorry you are having such a hard time waiting for the results.  I think what you are hearing from all of us is that we think you would be better off if you didn't spend quite so much time worrying and instead spent time in other worthy activities like:

planning (hot puppy)
talking to folks in person (Philly)
counselling (Rapidrod)
walking (me)
studying up on the first year (Next)
etc ...



But hey -- sometimes none of us feel up to doing worthy projects and just need to laugh a little.  This site has resources there too -- in the Off topic forum.  So if you feel like whiling away the time check out a few of these:


http://forums.poz.com/index.php?topic=21288.0

http://forums.poz.com/index.php?topic=23072.0

http://forums.poz.com/index.php?topic=21805.0

http://forums.poz.com/index.php?topic=15995.0

http://forums.poz.com/index.php?topic=13827.0



and then there's always that all-time-most-favorite thread on AIDSMEDS (hint see p. 9 or 10)



IF you wind up poz, there will be a quiz  ;D

Title: Re: Help... I just got my result...
Post by: Ann on September 24, 2008, 05:56:20 pm
I still suggest getting busy with things that have NOTHING to do with hiv.

Like your homework. Or...
Research low-fat nutritious recipes on the internet.
Cooking a low-fat, nutritious meal.
Clean the house.
Do the laundry.
Do some gardening.
Don't have a garden? Do some gardening for an elderly neighbour.
There are TONS of things you can do to take your mind off this until you get those results.

Ann

Title: Re: Help... I just got my result...
Post by: anniebc on September 24, 2008, 06:26:52 pm
I need help with the shearing and lambing, I have two bottle feeders on the go at the moment..trust me by the time you have finished with that, you will be too exhausted to thing of ANYTHING... ;D

Hugs
Jan
Title: Re: Help... I just got my result...
Post by: prayerblue on September 24, 2008, 06:40:30 pm
Ah, see I was always hoping to get a response from anniebc/Jan, you seemed to be the really awesome happy type I wish I could be, from wherever I saw responses you left. Heck, I always assumed you were negative and just here to help, cause I used to wrongly assume all the POZ staff were infectees...

Were it that I could shear and lamb (what is lambing?) just to have interaction and something constructive to do, I would gladly do so. I'm in a rut because I can't tell my mom or family in general, at least for a while, and I've no friends to speak of right now, having just started school... The mom thing is hardest, cause I know she needs to be happy and her life isn't strawberries and cream right now but she's the closest person to me in the whole world and I think it would kill her...

So, yeah, I've been glad for some of the ladies' responses, being either gentler or maternal in prose, because it reminds me of the bond I share with my mom... at least until she finds out I got infected (if that is the case.) I'm sorry, I'm a twentysomething with mommy attachment issues and loneliness... I guess I come here too much, but I've little else to go to keep some social interaction and I'm desperately afraid of being alone. Please don't see me as some kind of attention-whore or melodramatic loser... I'm just realizing I screwed my whole life up being shy and reserved toward people and never got the "making friends" down that well.

Hell.. to call a spade a spade... I'm envious of the ladies' forum, because I was always closest to women and how they share such close bonds... I miss that. I've always been the guy who was not into sports or beer or chicks or cars, and had his best friends as girls... too bad it isolates me in a few ways I didn't see coming.
Title: Re: Help... I just got my result...
Post by: anniebc on September 24, 2008, 07:57:33 pm
I have been positive for 6 years, I have gone from being a nursing sister of 27 years to a farmer and loving every minute of it..as evryone here has told you life goes on and you can still achieve your dreams..I did.

BTW..when I say lambing it means my spring lambs have started to arrive and keeping us busy...it doesn't take much to keep yourself busy, some of the things Ann suggested are a good idea...there really is no point in stressing yourself out at this point.

Hugs
Jan
Title: Re: Help... I just got my result...
Post by: prayerblue on September 24, 2008, 08:00:20 pm
Thanks, Jan.

I want to live out my dreams and life... I just hope that still the results have the chance to have been wrong, but I guess come what may this isn't the end of me at all.
Title: Re: Help... I just got my result...
Post by: prayerblue on September 25, 2008, 08:15:45 pm
Everyone, thanks for all your responses.

Tomorrow is the big day... and I'm sitting here watching ABC shows and trying to be happy, in hopes that I get great news tomorrow.

So I've a request for all (if anyone) reading this:

If you pray, please pray for the result that is meant to happen. While I hope it's negative, of course I'm aware of the logical accuracy of the last test. However, miracles happen...

And if you pray, please... pray for me to find the strength to move forward either way. And I hope some of you all will be around tomorrow about this time... I may definitely need some comfort, or maybe some jubilee.

And if you don't pray, please all who have any mind to, send some good vibes... good wishes, and just know I'm not gonna be such a pest anymore.

Thanks to all of you, and God bless you all...
Title: Re: Help... I just got my result...
Post by: BT65 on September 25, 2008, 08:32:24 pm
Prayer, I'll be thinking of you tomorrow. 

Also, just a request.  Unless your test actually turns out to be positive, could you please refrain from posting in the "Living With HIV" section.  I found your post to Matt (Newt) to be very contrite. 
Title: Re: Help... I just got my result...
Post by: prayerblue on September 25, 2008, 08:33:54 pm
Understood... boy, I just can't get anything right...
Title: Re: Help... I just got my result...
Post by: prayerblue on September 26, 2008, 10:37:24 am
Well, they said to come on in... which I dunno what that means, since some people on here said they got result by phone either way.

I'm at this last desperate moment before... I go in at 3 my time, so by 4 I'll know... Sorry to repost where it is unwelcome about something I've beat to death a million times. I just cannot help but be more scared than ever in my life...
Title: Re: Help... I just got my result...
Post by: Assurbanipal on September 26, 2008, 11:25:07 am
PB

You might want to think about asking someone to go the clinic with you. Or perhaps lining up some friends you can commiserate with tonight?

Good luck this afternoon.  Whatever the result, remember that you have an opportunity for a productive (and long) life ahead of you -- if you grab the opportunities you have.

Assurbanipal
Title: Let the confusion begin...
Post by: prayerblue on September 26, 2008, 08:48:45 pm
Let's go back a step. The planned parenthood clinic gave me a rapid test that showed positive/reactive last week, and then drew some test tubes of blood to send off. The clinician there said that my throat looked real bad and red and white patches, and that the weight loss made sense to her as a symptom.

Still, she said "we're going to send this off for a western blot to confirm. Check back next Friday."

Fast forward to today, the aforementioned Friday...

I walk in, the lady sighs and takes me to the back office with three papers in hand. We begin to talk, and she says "your EIA was nonreactive."

WTF? But the rapid was reactive, I say. "Well, this is a rare event, but we get it a lot here..." So, um, thanks, that makes me wonder why that is... but then she goes onto say "I've only seen one come back confirmed since I've been here." So are they using a bad lab, or just their uni-golds suck total ass?

She hands me a letter from the lab, which further says "a non-reactive HIV 1/2 antibody result does not exclude HIV infection since the time frame for seroconversion is variable. If acute HIV infection is suspected, antibody retesting and nucleic acid amplification (HIV DNA/RNA) testing is recommended."

So she says "come back in six months, we'll see what happens." Does she expect it to change? She says no but can't promise, of course... but this is nonsensical. Nowhere have I seen males test false positives on blood tests, just on oral fluid... so guys, what's the deal? Am I voted off the island back into the Am I? or someone I love is infected forums? Or is this a hiatus until the retest? Does anyone think it'll be positive?

Thanks for all the good wishes and messages, guys. Especially Ann... your note made me cry in a good way. And I know either way, I've made some good friends like Jenny, and still hope to make more.
Title: Re: Help... I just got my result...
Post by: RapidRod on September 26, 2008, 08:54:07 pm
You don't need to be on any forum at all. You have a confirmed negative via the Western Blot which trumps a positive test of any antibody test. Get on with your life.
Title: Re: Help... I just got my result...
Post by: prayerblue on September 26, 2008, 08:56:49 pm
 I'm dating someone who is +, though, and no one has said yet that I'm out of the woods completely... It was an ELISA, not a WB... she said no WB unless the ELISA is positive...
Title: Re: Help... I just got my result...
Post by: RapidRod on September 26, 2008, 09:00:12 pm
Then you have the "Someone I Care About Has HIV."
Title: Re: Help... I just got my result...
Post by: anniebc on September 26, 2008, 09:29:44 pm
Prayer

Now you have your result, the only forum you can post in now is  the "Someone I care about" as Rod has suggested...please stay within the rules, thanks for your cooperation.

Hugs
Jan
Title: Re: Help... I just got my result...
Post by: HopeandCope on September 26, 2008, 09:39:41 pm
Look Prayer....  Having a partner that is POZ is very important as well.  Do what I do, I talk to my counselor about my worries about my son and his girlfriend and dump all my anxiety on the therapist.  It really helps!! 

I think what other posters are trying to say to you is that many tests come back false positive. It does not mean that you are HIV+.   By swirling around with repeated questions can only frustrate you in long run not to mention posters that are really trying to help you.

You need to concentrate on what your partner needs in line of support and seek counseling for yourself as well.  You have said that you are confused and lonely but think about your partner and his needs.  It helps to concentrate on others, get involved and you will find that your fears start to abate.

Your partner needs you to be strong so you need to start absorbing all the education you can and that means to read and listen....

Hug your partner, wear a condom but don't forget that the human touch heals the most.

Jude

Title: Re: Help... I just got my result...
Post by: tag_man08 on September 27, 2008, 12:19:58 am
Beautifully spoke Jude.  Good luck prayer.  I am happy your story has a happy ending for you.  Remember these last 7 days and use them to educate others that still have no clue about HIV and the many issues you had to face while going through the testing process.  Don't get upset with the system....false positive tests do happen....but they are very rare.   You are someone special.  Continue to follow your dreams in college and know you can make it.
Title: Re: Help... I just got my result...
Post by: prayerblue on September 27, 2008, 12:41:43 am
So, I guess to sum it up... Ann was right all along (back in my Am I? post, her comment "My gut feeling (and my guts are famous) is that you're going to be just fine. Hang in there.") wasn't she?

I'm guessing no one here is thinking there will be for me that elusive and dreaded "late seroconversion." And I suppose, like Jan and good old cantankerous Rapid said, I've no business in this section if I'm negative... but I hope it stays constant. I hold all of you, even those who had harsher ways to say things to me, dear to my heart and hope I can stay on in some spectral manner by virtue of my love having the condition precedent. Just hope some of y'all will still talk to me!

Thanks for the memories, friends, and God bless all of you. I'll only return to the "I just tested" forum if a subsequent test is discordant, but I'm in no real hurry to test again either... a month or two should suffice, eh? (And if that happens, which it shouldn't, I'll wait until something more than a rapid test says +.)

I learned alot from the fear... and the false positive (as we're calling it) was an eye-opener. I will NEVER judge a person who has HIV, as I did long ago, as "dirty" or "diseased" because the truth is most of the poz friends I've seen on here are better in health and spirit than most of the people I know in the "real world."

Lots of love, and lots of hope, from my heart to yours... You all are the true survivors and beacons of hope.
Title: Re: Help... I just got my result...
Post by: anniebc on September 27, 2008, 01:03:39 am
Hi prayer

Personally I'm really pleased that you don't need to be in this forum or the "living with", but you can still post in the "someone I care about" forum if you feel the need.

Wishing you perfect health, and all you wish for yourself..do the right thing and you will remain in good health and achieve all the things you want in life, take care and enjoy life to the fullest.

Hugs
Jan
Title: Re: Help... I just got my result...
Post by: Ann on September 27, 2008, 09:09:30 am
Blue,

I checked your first post on these forums and looked at my calendar. Your test at PP was done in week ten. You don't have to wait six months for your end-of-window period result, you can test the week of October sixth.

You got a false positive result. As the woman told you, it happens. That's why we kept telling you to hang fire until you got your confirmatory WB. PP correctly didn't do a WB on your second test because it wasn't positive - and the test where they draw a whole vial of blood is one you can trust a lot more than the rapid tests.

You can test again in October for peace of mind. I don't expect you to get anything other than another negative result and neither should you. It might be worth it to NOT get a rapid test, just on the off-chance you get another false positive.

Ann
(who isn't going to say "told you so!") ;D
Title: Re: Help... I just got my result...
Post by: BT65 on September 27, 2008, 09:13:46 am
Congratulations, Blue.  Good health from here on out!
Title: Re: Help... I just got my result...
Post by: Miss Philicia on September 27, 2008, 11:41:20 am
And all of that weight loss wasn't a "symptom" -- it was due to unfounded, or semi-founded, acute anxiety.  Be careful of that mind-over-matter thing the next time, and maybe try and throw back some protein shakes and regain your appropriate weight.
Title: Re: Help... I just got my result...
Post by: prayerblue on September 27, 2008, 11:54:01 am
I just had no idea the mind was so powerful, to be honest...

And to be fair, the mind is a monster right now. It refuses to see on paper and accept totally. But my doc's said my crazy thoughts like the lab mixing it up or doing it wrong or giving my result to another person are untrue, and that if those were real symptoms of COURSE the elisa would be positive by now.

Back to school life and the silly old things like worrying about what to eat and what to wear... and now how to be there for my b/f.
Title: Re: Help... I just got my result...
Post by: Miss Philicia on September 27, 2008, 12:09:32 pm
I thought you said that you see a psychiatrist regularly?  How regularly?  And have you been diagnosed with obsessive compulsive disorder?  I'm no shrink, but you seem to exhibit all of the traits of this.  Might be a good idea to go over all of this with someone that knows the signs, because this can't possibly be healthy for your mind.

Oh, and I see you keep reading threads on this board even now that you know you're negative.  That's not particularly letting go.  Just sayin'
Title: Re: Help... I just got my result...
Post by: BT65 on September 27, 2008, 12:11:08 pm
Prayer, weren't you asked to refrain from posting anywhere except in the "Someone I care about" forum?  Or the "Am I Infected" forum for the next time you think you've been infected?
Title: Re: Help... I just got my result...
Post by: prayerblue on September 27, 2008, 12:30:44 pm
Aight, Betty and philly... I get it... I'm not in positive accoring to the elisa, regardless of the first test, so get the heck out... sorry for responding to the well-wishing responders. To make it even easier, I'll log out so no one will see me haunting here. But for the well-wishes, thanks... just try to be a little understanding that it hasn't sunk in totally?

God bless...

EDIT: and I offended philly without realizing it, so I apologize. I just felt attacked because for all intents and purposes the clinician had said to get in touch with support groups because the result was unlikely to change... I didn't mean to be unwelcome. I don't even think I deserved a neg any more than anyone on here!
Title: Re: Help... I just got my result...
Post by: Miss Philicia on September 27, 2008, 12:34:45 pm
"The Club"???  Yeah, I'm just LOVING the velvet ropes and VIP room here.  I'm just SO HAPPY that I have HIV, and I'm just SO DAMN SORRY that you do not.

Give me a f*cking break -- how condescending.
Title: Re: Help... I just got my result...
Post by: Peter Staley on September 27, 2008, 03:03:36 pm
And on that note, I'm locking this thread.

Peter