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Author Topic: Should I get re-tested, or is this just denial?  (Read 3755 times)

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Offline qrky

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  • Posts: 25
Should I get re-tested, or is this just denial?
« on: December 28, 2006, 12:53:40 AM »
I justed test HIV+ Thursday.  There's a number of things timeline-wise - and making me question the doctor's competence - that make me wonder if I should get a quick test prior to going in for my VL etc next week.  There's only been one mild illness I have had this entire year - back in June - lasted about a week, fever, doctor at the ER described as some unpronouncable viral issue that he'd seen in several people.  It went away.  About two days before I started having this sickness was my first test which came back negative (and was 25+ days after being with a person I later found out was poz for all of about two minutes, unsafe and stupid, but no orgasms or anything).  If this was seroconversion, shouldn't that test have been indeterminate or positive?  Also, about two weeks later, I ended up cleaning up after a very toxic flood - I was basically up to my elbows in chemical mud, bacterial sludge, which judging from the smell and health advisories for almost two weeks - shouldn't I have had *some* illness from this?  Even with the negative result I was afraid of this stuff.  I know true "false positives" are virtually unheard of, but this is the same doctor whose 3-day test took almost two weeks to get back, he ran (I assume ELISA and WB) on the same single sample which I seem to remember the first guy who tested me back in June say they did not do.  If it's a true positive, I can accept that and deal with this - but given other things he's said, and the fact that I have not been sick a day except for back in June despite working 20+ hours a day some days, poor diet, almost no exercise - I'm wondering if I should not get a confirmation from Oraquick or something.  And if he did screw up, someone in the State needs to hear this because I would not want anyone to go through the hell myself and my family have gone through in the past week.  Just some advice as to whether procedurally this makes sense - or if I'm just totally nuts.

-d

Offline RapidRod

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  • Posts: 15,280
Re: Should I get re-tested, or is this just denial?
« Reply #1 on: December 28, 2006, 04:24:50 AM »
Did your doctor advise you that you are HIV positive? Did you receive your copy of the tests showing you that you are positive? If not, you should be posting in the "Am I Infected?" forum.

Offline Ann

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Re: Should I get re-tested, or is this just denial?
« Reply #2 on: December 28, 2006, 07:35:33 AM »
qrky,

Your initial positive hiv test should have been double checked with another ELISA and a Western Blot. You can read more about hiv testing in the HIV Testing Lesson.

If you cannot be sure your positive result has been confirmed through the proper procedures, then yes, by all means, you should have it double checked with another test. There are many GPs out there who don't know the first thing about hiv testing, so it is very possible you don't yet have a conclusive positive result.

Good luck and keep us posted.

Ann
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"...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 koi1

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  • Posts: 713
Re: Should I get re-tested, or is this just denial?
« Reply #3 on: December 28, 2006, 08:38:55 AM »
I remember when I tested positive on 11/20/06, I held on to the idea that it could have been a false positive. I was like you in that I had been healthy as a horse forever. I had recently begun to have strange digestive issues though, but I was hanging on to every shred of denial. I hink you should go to a competent site and get an instant test. They sometimes confirm an oral fluid test with a fingerprick test. All in less than an hour. If you can't wait to find out this is an option.

I had tested + with an oraquick test. In the back of my mind I knew that it was probably an accurate result. The next day I went to my local gay and lesbian center and they did a fingerprick test(20 minutes). When the counselor got my result, he said to stop wasting time and get to my general physician and start getting care. I did and they ran the elisa and the western blot and it came back reactive. I know it is hard to take, I put off getting tested for a long time.

Standard practice now is to do a cd4 count and a viral load test, along with a virus genotype test which tests for drug resistance. They will do this before they prescribe you any medications. It is highly unlikely that these tests will be inaccurate. You could do what I did and go get other instant tests, as the probability of accurate diagnosis goes up when you take more than one. Best of luck, and I hope you won't have to join our club, but if you do it can be a goldmine of support and information.

rob
« Last Edit: December 29, 2006, 08:57:28 AM by koi1 »
diagnosed on 11/20/06 viral load 23,000  cd4 97    8%
01/04/07 six weeks after diagnosis vl 53,000 cd4 cd4 70    6%
Began sustiva truvada 01/04/07
newest labs  drawn on 01/15/07  vl 1,100    cd4 119    7%
Drawn 02/10/07
cd4=160 viral load= 131 percentage= 8%
New labs 3/10/07 (two months on sustiva truvada
cd4 count 292  percentage 14 viral load undetectable

Offline Coffeechick88

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  • Posts: 431
Re: Should I get re-tested, or is this just denial?
« Reply #4 on: December 29, 2006, 05:50:08 AM »
It is very possible to still be testing negative 25 days after exposure.  As for the HIV test--if they did the ELISA/Western Blot Combo, you are definitely positive.  All rapid tests should be confirmed by this method, you do not confirm a rapid test with a rapid test (though on the oral samples they will sometimes test with blood to see if that also comes back reactive).  An ELISA/Western blot is recommended to confirm positive rapid tests, while there are false positives on the rapid tests, it is most likely that you'd be found positive on that as well. 

I do not know what the doctor ordered in your case, but gettting a copy of your test results isn't that hard.  I have actually seen physicians order only an ELISA and make assumptions off of that and just because one is an MD doesn't mean they are familiar with HIV.  My bet is though, your test is a true positive.  When you first find out you have HIV, it can be a scary thing and it is easier to think 'Maybe it is a false positive'.  You also have to realize that whether you have been sick or not is irrelevant. 
Lucas James is here
Born 6-14-08 at 1233 am
8 lbs 14 oz, 22 in long

Offline koi1

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  • Posts: 713
Re: Should I get re-tested, or is this just denial?
« Reply #5 on: December 29, 2006, 08:46:31 AM »
I did not suggest to get a definitive confirmation with the instant tests. I just suggested it as a way of getting an idea while he waits for another western blot and elisa. If he already tested positive on these tests, it would be highly unlikely that he would be negative after a reactive rapid test. This is just a way to ease his way out of denial. This is just one option. Waiting from a week to three for results might be more stressful at this point than just going in for a few rapid tests, which are very reliable. Going back to his regular doctor might perpetuate denial if he feels he is incompetent and more like the lead in a comedy of errors.

rob
« Last Edit: December 29, 2006, 08:52:13 AM by koi1 »
diagnosed on 11/20/06 viral load 23,000  cd4 97    8%
01/04/07 six weeks after diagnosis vl 53,000 cd4 cd4 70    6%
Began sustiva truvada 01/04/07
newest labs  drawn on 01/15/07  vl 1,100    cd4 119    7%
Drawn 02/10/07
cd4=160 viral load= 131 percentage= 8%
New labs 3/10/07 (two months on sustiva truvada
cd4 count 292  percentage 14 viral load undetectable

Offline Coffeechick88

  • Member
  • Posts: 431
Re: Should I get re-tested, or is this just denial?
« Reply #6 on: December 29, 2006, 11:36:06 AM »
I wasn't disagreeing or agreeing with your post, koi, but responding to the first one.  It might help to at least first see if the doctor did the right test.  A rapid test would be a good idea--but I've also seen it work the opposite way and make the person even more paranoid.  Anyhow, nothing really seems out of the ordinary.  If the right testing wasn't done, then by all means repeat it elsewhere.  But a good chance is, this is just delaying the inevitable.
Lucas James is here
Born 6-14-08 at 1233 am
8 lbs 14 oz, 22 in long

Offline koi1

  • Member
  • Posts: 713
Re: Should I get re-tested, or is this just denial?
« Reply #7 on: December 29, 2006, 03:37:33 PM »
Right coffee chick, you are going with the presmise of just accept it, but that is difficult when you have just been diagnosed. I know I clutched at straws for a few days. I had a total of 3 rapid tests done at two different sites, by the third one I decided to get my butt to my doctor and fight to get an appointment with the ID doctor asap. It is kind of like a grieving process when you first find out. So far, I have not heard of anyone on this forum that just accepted it without having some sort of denial or more serious reaction. I felt exactly the same as this person when they told me I was positive. I even went online to investigate how reliable the rapid tests were. And I found information saying how they produce false positives, and I clung to that information for a few days, thinking yeah there is a chance that I am negative. However those false positives were a while ago and they were most likely due to clinician error. The kinks have been worked out of those tests, and they are very reliable. I read what I wanted to hear. Going through this process is not harmful if it lasts a few days. It is a way of coming to terms with it, like the Kubler Ross theory. If the denial keeps you from seeking treatment then it can be disastrous.
diagnosed on 11/20/06 viral load 23,000  cd4 97    8%
01/04/07 six weeks after diagnosis vl 53,000 cd4 cd4 70    6%
Began sustiva truvada 01/04/07
newest labs  drawn on 01/15/07  vl 1,100    cd4 119    7%
Drawn 02/10/07
cd4=160 viral load= 131 percentage= 8%
New labs 3/10/07 (two months on sustiva truvada
cd4 count 292  percentage 14 viral load undetectable

Offline Coffeechick88

  • Member
  • Posts: 431
Re: Should I get re-tested, or is this just denial?
« Reply #8 on: December 30, 2006, 03:41:26 PM »
I guess we all deal with being positive in different ways.  I had to resign myself to it back when I tested positive, not denial, just numb with shock.  I do know how wonderful it is to think there may be a mistake and that it isn't true that I am positive, since statistically I hit huge odds.  Of course I also was extremely ill--about 2 weeks after I was infected, what I now know was probably ARS (but I also acquired CMV) put me in the hospital and I didn't get well for several months, so I guess I can see that it might have been easier for me as opposed to if I had been glowing with good health like this guy. Anything that can be done to get past that denial is worth it--that person's health is what will suffer. 
Lucas James is here
Born 6-14-08 at 1233 am
8 lbs 14 oz, 22 in long

Offline skipmco

  • Member
  • Posts: 4
Re: Should I get re-tested, or is this just denial?
« Reply #9 on: January 05, 2007, 01:11:24 PM »
I can appreciate what you are going though.  Be patient and keep in mind that you have to go through it to get the answers you need.  Even though the answers might not be what you want to hear knowledge is power- power to live life longer or appreciate the time you have.  Not everything works out for the best and you are smart enough to know that.  I think you are brave enough to face it too but keep in mind that there are a lot of people here that will help support you.

You can question the doctor if it makes you feel better...and you probably should.  But in the end while the chance of a false positive is there...it's minimal.  But do what you need to do for your own piece of mind and move forward.  Best of luck.
scott
"Dance like nobody's watching; love like you've never been hurt. Sing like nobody's listening; live like it's heaven on earth." - Mark Twain

 


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