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Author Topic: So much to learn, so many questions!  (Read 3552 times)

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Offline AaronbytheC

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  • Posts: 116
So much to learn, so many questions!
« on: June 02, 2010, 07:56:56 PM »
Well yesterday morning I got the news no one wants to hear.  :-\
Honestly my first thought was how this would affect the people in my life, how will they react, will they disown me?  My next thought was - I need to educate myself!  Google is my friend and brought me here.  I spent most of last night reading old post, trying to learn and get my head around this.  Today for a brief moment I stopped and thought about myself, why am I so unfazed and numb by all of this?  ???  I guess as many have said in other post I'm just in crisis mode.  I need to get organized and get a plan!  I'll have time for my feelings later.

I took one of those Home Access test, I can say from personal experience their "Counseling Services" are nonexistent!  They basically said, "your test sample came back positive, but you should go get a second opinion to be sure?  Is there anything else we can help with?"  So cold?   >:(

With that said, no one knows about my status.  I live in a rural area.  I've tried a few of the online search tools (even the one on this site) for HIV specialist doctors but as expected nothing anywhere remotely close.  Any ideas who one would call to try to get a real list?

I know my exposure was about three months ago so I assume I'm still in pretty good shape.  I have middle of the road insurance that I've had for over 10 years.  I'm usually very healthy so I've really only used it a couple of times so I don't know much about it, some sort of Blue Cross PPO with generic Rx.  I'm guessing most of the HIV meds are not generic?  Should I try to up my coverage before I see a doctor or just let the cards fall where they do?  I assume once I go see a doctor there will be no turning back with my insurance coverage.
« Last Edit: June 04, 2010, 06:50:26 PM by SouthofSJ »
04/2012 CD4 721 / 29% / VL UD
02/2011 UNDETECTABLE!
12/2010 CD4 587 / 24% / VL 210
11/2010 Started Atripla
10/2010 CD4 420 / 18% / VL 13,500
09/2010 CD4 541 / 17% / VL 10,500
08/2010 CD4 498 / 18% / VL Not Taken
07/2010 CD4 307 / 18% / VL 9,500
06/2010 Confirmed Poz
03/2010 Infected
06/2009 Neg

Offline Matty the Damned

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Re: So much to learn, so many questions!
« Reply #1 on: June 02, 2010, 08:39:35 PM »
Yeah, you need that Home Access test result confimed by a second test performed in a clinic.

MtD

Offline mecch

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Re: So much to learn, so many questions!
« Reply #2 on: June 02, 2010, 08:42:25 PM »
Get it confirmed.
Anyhoo, welcome.
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline jethro

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Re: So much to learn, so many questions!
« Reply #3 on: June 02, 2010, 09:34:43 PM »
Welcome to the forum. As was mentioned above, get the test results confirmed. And I would suspect from there you could be directed to treatment and/or counseling. The numbness is normal too. One of the few things I can remember being told that day was it isn't a death sentence. It will get better, too

Offline Ann

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Re: So much to learn, so many questions!
« Reply #4 on: June 03, 2010, 08:58:00 AM »
South,

You absolutely need to get that positive result confirmed before you go any further. False positive results can and do happen on the standard antibody tests.

You need to go to an hiv testing center and re-do your antibody test. If it is once again positive, you need to be tested with a Western Blot.

Certain conditions, like autoimmune diseases, can cause false positive antibody results. Sometimes false positives happen for no apparent reason. A WB test will rule false positives out.

You can find a testing center near you by putting your zip code into the health-care directory at POZ.com. http://directory.poz.com/

Until you've had both a positive antibody result and a positive WB result, you will not be considered hiv positive. So get that confirmatory test done.

Ann
Condoms are a girl's best friend

Condom and Lube Info  



"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline AaronbytheC

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  • Posts: 116
Re: So much to learn, so many questions!
« Reply #5 on: June 03, 2010, 02:03:56 PM »
Thank you all for the advice.  I used the online finder Ann mentioned and called the closest place to set up a test.  After I explained what I had already done they want me to go to the county wide clinic a few towns away as they can jump right to the blood test rather than do another rapid type test.  I looked at their list of services, everything from Testing, Treatment, Case Management and Insurance Assistance...  I guess it's as good of a place to start as any.

They asked a lot of questions on the phone, (full name, DOB, phone number, and where I lived)  I asked why so many personal questions and the nicely said the test is confidential, not anonymous.   ;)  The soonest they could see me is tomorrow at 11.   So another day of waiting  >:(  I know things will get better with time, I just wish there was a fast forward button!   ;D 

04/2012 CD4 721 / 29% / VL UD
02/2011 UNDETECTABLE!
12/2010 CD4 587 / 24% / VL 210
11/2010 Started Atripla
10/2010 CD4 420 / 18% / VL 13,500
09/2010 CD4 541 / 17% / VL 10,500
08/2010 CD4 498 / 18% / VL Not Taken
07/2010 CD4 307 / 18% / VL 9,500
06/2010 Confirmed Poz
03/2010 Infected
06/2009 Neg

Offline Ann

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Re: So much to learn, so many questions!
« Reply #6 on: June 03, 2010, 02:06:54 PM »
I'm glad you took care of this so quickly. Good luck with the test.

Condoms are a girl's best friend

Condom and Lube Info  



"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline Inchlingblue

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Re: So much to learn, so many questions!
« Reply #7 on: June 03, 2010, 10:51:19 PM »
Definitely get the insurance straightened out even before you get the test confirmed. Maybe you can find out anonymously (online?) what exactly your current coverage includes, especially when it comes to medications. HIV meds, especially the good ones are not generic and are expensive (about $2K a month).

There are programs such as ADAP which can help out with underinsured but only if you qualify.

Offline AaronbytheC

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Re: So much to learn, so many questions!
« Reply #8 on: June 25, 2010, 06:46:04 PM »
Well that was probably the longest three weeks of my life.   >:(  I think I've lost a good 10 pounds from stress!
So after the home access results I went to a real clinic for the blood test.  They seemed so nice and on their game.  The counselor talked to me for an hour before the blood draw and made me feel so much better.  She said she would call in two weeks or less with the results...  Today two weeks turned to three so I called her just before lunch.  She sounded very distracted, had to ask my name twice, then put me on hold for 15 minutes to finally came back to tell me oh they are back "when would you like to come in to find out the results"?   >:(  (I frown because during our one hour chat before the blood draw we discussed the distance I have to travel and time to get out of work.  I told her I had already gotten the shocking news on the phone once so regardless of the result I was fine hearing it over the phone.  I promised I would not to suck the end of my 9mm if I was still positive)   ;D  It took a little talking on the phone to remind her of this, but I finally got her to tell me the results.  Crap, positive...  Not that I was expecting a different result but the unknown is now known and it's a heavy feeling as most of you know.

I'm not a particularly religious person, but I do believe in karma and humanity.  I consider myself to be a very kind and caring person who treats other as I would myself so I'm not sure why this has happened to me...  Regardless, I am sure there is a reason the universe wants me to walk this path!  Now I just have to find it!  :)  

Whats the saying, "when a door closes a window opens"...  Given the experience I just had I was really questioning is this the place I want to entrust my life to??  What now??  Then out of nowhere, there was my window!  I suddenly remembered a guy I met about 6 years ago, more of a friend of a friend but someone I would have stopped and talked to if I saw him on the street.  Years ago I had heard that he was poz but didn't think much of it at the time.  Today I thought, "he is local, poz for a few years, I should contact him and ask for his insight".  I dug around and found his email so I sent him an email.  He emailed me back within an hour with his phone number and said call anytime.  I called him and filled him in on what my day was like!  LOL  When I told him he was very warm, caring and helpful but the big surprise was when he told me that two years he quite his day job and when to work full time in county's HIV program!  Seriously it was like striking gold!  He is so knowledgeable about everything form local doctors, meds, insurance, laws regarding insurance and HIV, support groups and more...  He also told me about programs in the county for "Under Insured" people to make sure they get their meds if it turns out I need them in the future.  He seriously took me from such a low point this morning to a high that has me so optimistic!  What a huge burden lifted!
 
After talking with him for the better part of an hour it turns out he became positive when he was only 19, he's 41 now!  With 22 years poz under his belt and his occupation in the HIV field I think I can trust his help.   Along with doing my own research online, I think I'm going to tuck myself under his wing and let him guide me.   :P

We're going to meet for coffee and discuss whats next, figure out where to go to get the first blood work done and start my new life...

So there it is, I am positive, my glass is half full not half empty and I will live on!   ;D
« Last Edit: June 25, 2010, 08:09:03 PM by AaronbytheC »
04/2012 CD4 721 / 29% / VL UD
02/2011 UNDETECTABLE!
12/2010 CD4 587 / 24% / VL 210
11/2010 Started Atripla
10/2010 CD4 420 / 18% / VL 13,500
09/2010 CD4 541 / 17% / VL 10,500
08/2010 CD4 498 / 18% / VL Not Taken
07/2010 CD4 307 / 18% / VL 9,500
06/2010 Confirmed Poz
03/2010 Infected
06/2009 Neg

Offline Matty the Damned

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Re: So much to learn, so many questions!
« Reply #9 on: June 25, 2010, 06:53:26 PM »
Sorry to hear you've had that result confirmed Aaron. :(

Ah well.

Your case demonstrates one of the major problems I have with home access testing - the actual test is only half of the business. The other half is appropriate support provided by a suitably trained and understanding professional

MtD

Offline john33

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Re: So much to learn, so many questions!
« Reply #10 on: June 25, 2010, 07:57:30 PM »
Aaron I'm sorry to hear that about the confirmed result, but glad you found us.
And moreover I'm glad you have someone who can help and advise you.

Just remember "one day at a time' and breath you do learn to cope.

I suggest taking the time to look through the lessons section. It may seem overwhelming (don't try to digest it all in one go), but information is power

John

Offline max123

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Re: So much to learn, so many questions!
« Reply #11 on: June 25, 2010, 10:22:16 PM »
hi aaron,

well...welcome 2 the forums.

it sounds like what your experiencing (that numb feeling) is what most of us have as well. its good that you've taken a proactive stance rather than a reactive one. just remember to let yourself feel what you need to feel, to heal. it's also great that you are starting to build your support network so early on. hang in there, find the right people to talk to, pay attention to your body & mind and all will be okay. check out the lessons section to further gain insight on what your friend will likely be explaining about the labs, etc.

max
1/86 - 6/08 (annually): neg elisa
7/09: pos elisa/pos wb
8/09: cd4 560, cd4% 35, vl 13,050
12/09: cd4 568, cd4% 33, vl 2,690
4/10: cd4 557, cd4% 29.3, vl 6,440
7/10: cd4 562, cd4% 29.6, vl 3,780

Offline Ann

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Re: So much to learn, so many questions!
« Reply #12 on: June 26, 2010, 09:46:42 AM »

I'm not a particularly religious person, but I do believe in karma and humanity.  I consider myself to be a very kind and caring person who treats other as I would myself so I'm not sure why this has happened to me...  Regardless, I am sure there is a reason the universe wants me to walk this path!  Now I just have to find it!  :) 


OK, look. You've got to get it through your head that hiv is just a virus, it's not a punishment sent down from on high.

I also believe in karma, but the kind of karma you're talking about is instant karma and that's just pop culture. Real karma comes from past lives, not the current one. What you do in this life is storing up your future karma for future lives. How you deal with your diagnosis is going to affect your future self, not your current self (obviously aside from the immediate physical health stuff). Past life karma is the simple, if unpopular, answer to the question of why do bad things happen to good people. It just is, ok?

I'm glad you found someone helpful and knowledgeable to talk to about all this. You're gonna be ok.

Ann
Condoms are a girl's best friend

Condom and Lube Info  



"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline wtfimpoz

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Re: So much to learn, so many questions!
« Reply #13 on: June 28, 2010, 02:39:13 PM »
"I took one of those Home Access test, I can say from personal experience their "Counseling Services" are nonexistent!  They basically said, "your test sample came back positive, but you should go get a second opinion to be sure?  Is there anything else we can help with?"  So cold?   >:("

Glad to know i'm not the only one to receive results from that horrifying company!

My first test was lightly reactive with western blot indeterminate, done at a testing center.  My second test was with home access, and I honestly thought it would come back negative or indeterminate.  The...i'm not even sure I'd call her a customer service rep...was absolutely horrifying.  I got pretty much the exact same line.  Mine was "Your test sample came back positive, you should get a second opinion. Why don't you call back when you're ready to talk".  To which I, having somewhat prepared myself for the answer I received, responded "No, I want to talk now. Who do I go to?  How do I find an ID doc?  What kind of confirmatory test did you do?  Was it Positive or indeterminate?".  She told me they did an immunoflourescent test, it was not indeterminate it was positive, and that I needed to talk to my doctor.  Every single effing answer to every effing question I posed afterwards was "you need to talk to you doctor".  At one point I admitted that I hated my primary care physician and asked if she could just take a moment to help me sort through new doc options.  The reply?  I'm not kidding..."you need to talk to your doctor, why don't you call back later?".  I've been using that test for YEARS.  I think I liked it because it never made me really question the extent of my sexual activity.  In retrospect, that was a very, very bad thing. 

I don't know if ther is any discussion about it, but on a side note, the FDA needs to pull their license.  Is there any way to voice a complaint?  It was devastating getting the diagnosis at 28 after having largely prepared myself for it.  If i'd received it at, say, 19, without knowledge of HOW to even search for my doc, what my future looked like, or even a few cheap words of encouragement, I could see myself ending my life.  As it was, I'd had some good counselors talk to me before I received a definitive positive, and their words and inspiration basially carried me. 

09/01/2009-neg
mid april, 2010, "flu like illness".
06/01/2010-weakly reactive ELISA, indeterminant WB
06/06/2010-reactive ELISA, confirmed positive.

DATE       CD4     %     VL
07/15/10  423     33    88k
08/28/10  489     19    189k
09/06/10-Started ATRIPLA
09/15/10  420     38    1400
11/21/10  517     25    51

Offline Miss Philicia

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Re: So much to learn, so many questions!
« Reply #14 on: June 28, 2010, 03:22:50 PM »
"I took one of those Home Access test, I can say from personal experience their "Counseling Services" are nonexistent!  They basically said, "your test sample came back positive, but you should go get a second opinion to be sure?  Is there anything else we can help with?"  So cold?   >:("

Glad to know i'm not the only one to receive results from that horrifying company!

My first test was lightly reactive with western blot indeterminate, done at a testing center.  My second test was with home access, and I honestly thought it would come back negative or indeterminate.  The...i'm not even sure I'd call her a customer service rep...was absolutely horrifying.  I got pretty much the exact same line.  Mine was "Your test sample came back positive, you should get a second opinion. Why don't you call back when you're ready to talk".  To which I, having somewhat prepared myself for the answer I received, responded "No, I want to talk now. Who do I go to?  How do I find an ID doc?  What kind of confirmatory test did you do?  Was it Positive or indeterminate?".  She told me they did an immunoflourescent test, it was not indeterminate it was positive, and that I needed to talk to my doctor.  Every single effing answer to every effing question I posed afterwards was "you need to talk to you doctor".  At one point I admitted that I hated my primary care physician and asked if she could just take a moment to help me sort through new doc options.  The reply?  I'm not kidding..."you need to talk to your doctor, why don't you call back later?".  I've been using that test for YEARS.  I think I liked it because it never made me really question the extent of my sexual activity.  In retrospect, that was a very, very bad thing. 

I don't know if ther is any discussion about it, but on a side note, the FDA needs to pull their license.  Is there any way to voice a complaint?  It was devastating getting the diagnosis at 28 after having largely prepared myself for it.  If i'd received it at, say, 19, without knowledge of HOW to even search for my doc, what my future looked like, or even a few cheap words of encouragement, I could see myself ending my life.  As it was, I'd had some good counselors talk to me before I received a definitive positive, and their words and inspiration basially carried me. 



If you expected counseling services along with your testing then shouldn't you have checked to see if this was provided before selecting the home testing option?  You know, there are places that you can go in person that provide all of this.
"I’ve slept with enough men to know that I’m not gay"

Offline wtfimpoz

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Re: So much to learn, so many questions!
« Reply #15 on: June 28, 2010, 04:17:13 PM »
ummm, thankfully I'd been to those places already...thats how I got the first indeterminate result.  But yes, my understanding was that a degree of counseling was REQUIRED to be provided from Home Access by the FDA.  A cache from google yields this quote from their FAQs...

"Q. What does FDA approved mean?
A: Our entire service has been scientifically reviewed for safety and effectiveness by the U.S. Food and Drug Administration (FDA). FDA granted Home Access Health nationwide clearance to market its service on July 22, 1996. The Home Access at-home telemedicine HIV *counseling* and testing service is the ONLY such service available in the United States approved by the U.S. Food and Drug Administration. In the past, FDA has warned consumers against purchasing or using any HIV testing service (especially over the internet) that has not been FDA approved."

http://webcache.googleusercontent.com/search?q=cache:WoTzbjS5SI0J:www.homeaccess.com/HIV_FAQ.asp+home+access+hiv+counseling&cd=2&hl=en&ct=clnk&gl=us

If their self-description as a "counseling and testing service" (they even put "counseling" at the front!) is not enough to assume that they provide counseling, I'm really not sure what is.  And no, I don't think we can fairly claim that either my experience, or that of the OP, can be called "counseling".  And no, I don't think its realistic to expect people to know ahead of time that they might require counseling in an instance like this and to then make decisions about their testing site accordingly.   And I strongly believe that very young people, or people who consider themselves low risk, could react in adverse ways under the horrifying lack of compassion the company provides.       
09/01/2009-neg
mid april, 2010, "flu like illness".
06/01/2010-weakly reactive ELISA, indeterminant WB
06/06/2010-reactive ELISA, confirmed positive.

DATE       CD4     %     VL
07/15/10  423     33    88k
08/28/10  489     19    189k
09/06/10-Started ATRIPLA
09/15/10  420     38    1400
11/21/10  517     25    51

Offline hotpuppy

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Re: So much to learn, so many questions!
« Reply #16 on: June 28, 2010, 07:55:57 PM »
My experience wasn't much better....

I went in the Friday after Thanksgiving..... I was sick as hell over Turkey day 2007.  The doc took one look at me and said, You have primary HIV infection.  I replied, I hope you are wrong, we'll see.

ELISA (rapid) was negative.  I somehow managed to convince them to do a Western Blot.... I'm persuasive sometimes.  It came back indeterminate.... I researched it and convinced the clinic to give me the actual results.  They told me what had tested hot and I told them it meant I was poz.... which sparked an argument until I pointed them to the research on it.  You see they rarely do WB on you unless your ELISA is positive.  So they were able to see my seroconversion happening.  At the time they tried to convince me to do a viral load but I was a dumbass and didn't realize that a HIV PCR RNA was the same as a viral load and nobody bothered to explain that.  Hey, I said I went to school, I just didn't mention it was the school of hard knocks.

So, they told me to go home, enjoy Christmas and New Years and return in January for retesting.  I contemplated getting insurance that day but figured it was morally wrong and I'd get strung up in right wing hell if I did it.  Ah the side effects of a conscience. 

So what to do?  Get the test elsewhere and see what happens.  I went to dial-a-test.com (or whatever they were called).  They had dial-a-doc write a scrip to labcorp.  I went in, gave blood... and waited 4 days while calling constantly for results.  The Friday before Christmas I got my answer.  "Your results are positive. The Elisa, Western Blot, and PCR RNA are positive.  Would you like us to fax your results to you?  Have a Merry Christmas."  Um yea, and f**k the horse you rode in on too.  I'm not bitter btw.   ;D

That was 2.5 years ago..... so yea, I wouldn't let anyone I care about do online testing.  Offline testing varies as well. 

When it's all said and done, we still have it alot better than people did 20 years ago. 

Even if you live in the MOFN (middle of **** nowhere) you've taken the right step by making contact with someone who can help you get where you need to be.  Build your network of friends who don't give a damn if your poz.  Bonus if they can help you along the way while they are at it.
Don't obsess over the wrong things.  Life isn't about your numbers, it isn't about this forum, it isn't about someone's opinion.  It's about getting out there and enjoying it.   I am a person with HIV - not the other way around.

Offline wtfimpoz

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Re: So much to learn, so many questions!
« Reply #17 on: June 28, 2010, 11:03:58 PM »
LOL, they emailed mine.  If i recall correctly, the email includes a coupon for discounts on future tests!
09/01/2009-neg
mid april, 2010, "flu like illness".
06/01/2010-weakly reactive ELISA, indeterminant WB
06/06/2010-reactive ELISA, confirmed positive.

DATE       CD4     %     VL
07/15/10  423     33    88k
08/28/10  489     19    189k
09/06/10-Started ATRIPLA
09/15/10  420     38    1400
11/21/10  517     25    51

Offline mecch

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Re: So much to learn, so many questions!
« Reply #18 on: June 29, 2010, 01:14:36 PM »
HI welcome.
Dont take it out on the home testing industry.  Getting a positive result sucks and its not their fault. Maybe the service rep could have a few more answers but basically the advice is correct - you need to talk to a doctor.  Sooner (or later) you need help, advice, support, from real people with an interest in you.

You liked the convenience of home testing, impersonal service, until you got the wrong result  :-[

Sucks.  :-\
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline AaronbytheC

  • Member
  • Posts: 116
Re: So much to learn, so many questions!
« Reply #19 on: June 29, 2010, 03:05:19 PM »
Honestly while I think their "Counseling Services" sucked A$$ I have to admit they do serve a purpose.  People like me who live in a remote area would be far less likely to test without it.  I actually bought the kit online and had it mailed to my house.

In retrospect while I know when and how my HIV transmission occurred, at the time I had little doubt in my mind that it had actually happened...  Meaning I was sure that I was ok, I mean what’s the odds?  ::)  I wasn't about to make the 30-minute drive to a clinic, waste half of my work day and the clinic's limited funding for them to tell me everything was fine.

I guess to me it comes down to anyway people can find out is more important than how they find out.  It would still be nice if they would just hire competent counselors though!   ;D
04/2012 CD4 721 / 29% / VL UD
02/2011 UNDETECTABLE!
12/2010 CD4 587 / 24% / VL 210
11/2010 Started Atripla
10/2010 CD4 420 / 18% / VL 13,500
09/2010 CD4 541 / 17% / VL 10,500
08/2010 CD4 498 / 18% / VL Not Taken
07/2010 CD4 307 / 18% / VL 9,500
06/2010 Confirmed Poz
03/2010 Infected
06/2009 Neg

 


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