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Author Topic: shouldn't that test be Negative?  (Read 4775 times)

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Offline SecretKeeper

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shouldn't that test be Negative?
« on: September 10, 2007, 10:06:11 PM »
Hello.  Some of you already kinda know my "story" since I have been a member since shortly after my husband tested positive, but for those of you who don't know or the others who might want to know more here it is...
I am 28 years old.
My husband is 32 and just tested positive in June.
We have a 2 1/2 year old daughter and a 10 month old son.

When my husband tested poz in June I was also tested, but at that time was negative.  Since finding out about his status we have obviously been very safe in our sexual practices.  Condoms are our new best friend.  But I am quite certain I was infected 2 weeks before my first result.

I'm kinda still in that denial phase.  I have never gone through anything even remotely close to seroconversion illness and I don't feel "sick" now.  But I decided to have the second test done because of a whole bunch of little things just didn't add up to me AND because I don't think that first test counted since it was so shortly after our last unsafe sex.  So, anyway, today, after waiting over 2 weeks they finally get the results and tell me the news...POSITIVE.  (God I would hate that job.)  I thought I was fine, but then I started thinking - How the hell am I going to tell my husband? and my parents?  (We are very lucky to have a wonderful support system of family and friends.)  But telling my husband I dreaded the worst because he was so happy when my first result was negative.  Kinda like - "Thank God it's just me."  Well, now it's just us.

Maybe it's a blessing in disguise because now we can go through this together.
Anyway, I know I have lots of questions rumbling around in my mind, I just can't quite get them together yet.  It's alot to process.

Let me add though, that it drives me insane that the first question people most people ask is "How did you get it?"  It drove me nuts when someone would ask me about him after we would disclose his status, but now it drives me even more nuts when they ask me.  I know it's a normal question that arrises, (and no one we have dealt with has asked out of meaness) but it still drives me nuts.  I've come with out with my standard response of "It doesn't really matter to me anymore - it is what it is and I can't change the past.  So it doesn't matter how or why or when because answers to any or all of those questions won't change anything now."  
(And I wanna add ... "Not that it's any of your damn business anyway.")

Offline Matty the Damned

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Re: shouldn't that test be Negative?
« Reply #1 on: September 10, 2007, 10:52:07 PM »
SK,

I'm sorry to hear that you've received a positive test result. Please don't take offence but I need to ask you, have you had your result confirmed by a Western Blot test?

Regards,

MtD

Offline powerpuff

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Re: shouldn't that test be Negative?
« Reply #2 on: September 11, 2007, 04:44:20 AM »
in canada all positive results are then backed up with a western blot. incanada anyway?

Offline SecretKeeper

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Re: shouldn't that test be Negative?
« Reply #3 on: September 11, 2007, 07:38:11 AM »
yes, a Western Blot test was preformed - there's no getting out of this now - I'm positive about that. 
(gotta make jokes - it's either that or cry - lol)

Offline Ann

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Re: shouldn't that test be Negative?
« Reply #4 on: September 11, 2007, 08:22:25 AM »
SK,

I want to repeat the reply I made to you in your thread in the "Someone" forum, just to make sure you see it:

I'm worried that you may be jumping the gun. You said in your first post in the other thread that you had an oral test - but I have never, ever heard of Western Blot testing being included in the oral-type swab tests. WB testing is normally done with a blood sample.

I urge you to make sure your results have been confirmed through blood tests. Please don't think I'm doubting your word, because I'm not. I'm only concerned that maybe you mis-heard what you were told when the oral swab test was taken - it's easily done and totally understandable when you're anxious and stressed out.

Unfortunately, it is possible that you have seroconverted since your first (too early) test, however it is also possible that your oral swab test was a false positive. Please make sure you've been confirmed through blood testing.

Hang in there hun, I know this is an extraordinarily stressful time for you.

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 SecretKeeper

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Re: shouldn't that test be Negative?
« Reply #5 on: September 11, 2007, 07:08:26 PM »
I had them give me a copy of the results that they had received from the lab.  Here's pretty much what it says ...

******************************************************

Date Collected 08-23-2007
Date Received 08-27-2007

Specimen Type:  Oral mucosal transudate

Test Description:  HIV-1/HIV-2 Plus O Antibody
Date Analyzed 08-27-2007   Result: Reactive

Test Description:  HIV-1 Orasure Western Blot
Date Analyzed 09-07-2007   Result: Positive

There are no further tests pending on this specimen.

*******************************************************

On Thursday I am supposed to be going to the clinic my husband goes to.  They mentioned something that since I've never gone through seroconversion (that I was aware of anyway) that they might want to start me on meds right away.  So on Thursday they were going to draw a whole bunch of blood to check my counts and go over the paperwork mumbo jumbo with me.

I would really appreciate if anyone could for sure tell me that the type of test(s) run could result in a false positive or if this is a for sure thing. 

Offline Ann

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Re: shouldn't that test be Negative?
« Reply #6 on: September 11, 2007, 07:32:36 PM »
Hi SK,

As I said earlier, I'd never heard of oral WB testing and I came up empty handed on Google when I tried this morning. However, using the exact name used on your test result, I found this: Orasure Western Blot

Call me old-fashioned, but if I were you I'd make sure they ran another ELISA and WB when they're taking blood on Thursday. Hiv is something you don't want to guess about.

You're the second person today who's said something about starting meds because of not going through seroconversion, but the thing is, if you've tested positive you HAVE seroconverted. Seroconvert means the the blood (sero, from serum) has converted (changed) from being hiv negative to hiv positive. That's why you'll sometimes hear people referring to hiv status as seronegative or seropositive. It describes the absence or presence of antibodies in the blood, that's all.

The illness that SOMETIMES accompanies seroconversion is the body's reaction to the process the body goes through while producing antibodies. Some people have noticeable symptoms when this is happening, many others don't. This is why you cannot go by symptoms or the lack of symptoms when diagnosing hiv.

Some doctors believe in hitting hiv infection very hard and fast when they know for certain they are dealing with a very new infection. This is probably what the doctor is talking about. Have a look at the Lessons where you'll see sections that discuss starting treatment and other treatment related subjects. I'd recommend you learn as much about this as possible before making the decision and discuss it thoroughly with the doctor. The meds are a BIG commitment and you need to feel ready to start taking them.

Hang in there hun.

Ann


edited cuz my spellin is krap this thyme of nite
« Last Edit: September 11, 2007, 07:42:58 PM by 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 Matty the Damned

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Re: shouldn't that test be Negative?
« Reply #7 on: September 11, 2007, 07:40:56 PM »
Call me old-fashioned, but if I were you I'd make sure they ran another ELISA and WB when they're taking blood on Thursday. Hiv is something you don't want to guess about.

Absolutely. It's always wise to have a diagnosis of HIV infection confirmed by a blood test.

As Ann says, hang in there SK. We know what you're going through.

Regards,

MtD

Offline milker

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Re: shouldn't that test be Negative?
« Reply #8 on: September 11, 2007, 08:05:49 PM »
Interesting, I never heard of that test.

If antibodies to specific HIV-l proteins (p) or glycoproteins (gp) are present in the
specimen in sufficient concentration, purple bands may be visible at one or more of the
following positions on the nitrocellulose strip: gp160, gp120, ~65, ~55, ~51, gp41, ~31,
p24 and ~18 (number refers to apparentmolecular weight in kilodaltons).


http://www.fda.gov/cber/PMAsumm/P950004S.pdf

I too would go for the blood test anyway.

Milker.
mid-dec: stupid ass
mid-jan: seroconversion
mid-feb: poz
mar 07: cd4 432 (35%) vl 54000
may 07: cd4 399 (28%) vl 27760
jul 07: cd4 403 (26%) vl 99241
oct 07: cd4 353 (24%) vl 29993
jan 08: cd4 332 (26%) vl 33308
mar 08: cd4 392 (23%) vl 75548
jun 08: cd4 325 (27%) vl 45880
oct 08: cd4 197 (20%) vl 154000 <== aids diagnosis
nov 2 08 start Atripla
nov 30 08: cd4 478 (23%) vl 1880 !!!!!!!!!!!!!!!!!!!!!!!!!!
feb 19 09: cd4 398 (24%) vl 430 getting there!
apr 23 09: cd4 604 (29%) vl 50 woohoo :D :D
jul 30 09: cd4 512 (29%) vl undetectable :D :D
may 27 10: cd4 655 (32%) vl undetectable :D :D

Now accepting applications from blowjob ninjas™

Offline SecretKeeper

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Re: shouldn't that test be Negative?
« Reply #9 on: September 11, 2007, 08:12:11 PM »
Thanks Ann and MtD.  I appreciate your info.  I am so confused right now though.  The VNA is the only place in town that conducts HIV testing (not even the hospitals or family clinics) and this is the only test that they do.  It concerns me about possibly being a false positive because I know there are other people who have gone to this facility and been in this exact same situation.  Only they may not have had anyone to bounce the info off of and get other opinions.  I was told by the VNA that "Yes this is it.  There is no false positive on this test."  I'm not sure what to believe, but I am for sure going to say something to my husband's doctor or nurse or whoever I end up talking to Thursday about having a blood draw just to double check for a positive result.  They are telling me there are two types of oral tests - a rapid oral test and whatever test I took.  They said the test I took doesn't check the saliva it checks the cells (I had to rub it on the inside of my cheek).  One thing is for sure - if this was a false positive it sure did mess with my mind - big time.  But overall, I would say I'm doin' alright - I guess as good as anyone who just hears that they are HIV+ can be.

Offline milker

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Re: shouldn't that test be Negative?
« Reply #10 on: September 11, 2007, 10:05:30 PM »
The test you took checks for specific antibodies for specific hiv proteins (those are the gp120, gpxyz I mentioned earlier), so according to this document your test  is positive on the Western blot. The only thing that bothers us is that usually this is done with a blood sample, but I guess the technology has advanced and this is now possible to do with a swab.

When you get your blood test done on thursday ask for a Wb. I'm with Ann on this, old fashioned! We really don't like this uncertainty and I don't want you to freak out, but we want to be sure of your situation and help you accordingly.

Milker.
mid-dec: stupid ass
mid-jan: seroconversion
mid-feb: poz
mar 07: cd4 432 (35%) vl 54000
may 07: cd4 399 (28%) vl 27760
jul 07: cd4 403 (26%) vl 99241
oct 07: cd4 353 (24%) vl 29993
jan 08: cd4 332 (26%) vl 33308
mar 08: cd4 392 (23%) vl 75548
jun 08: cd4 325 (27%) vl 45880
oct 08: cd4 197 (20%) vl 154000 <== aids diagnosis
nov 2 08 start Atripla
nov 30 08: cd4 478 (23%) vl 1880 !!!!!!!!!!!!!!!!!!!!!!!!!!
feb 19 09: cd4 398 (24%) vl 430 getting there!
apr 23 09: cd4 604 (29%) vl 50 woohoo :D :D
jul 30 09: cd4 512 (29%) vl undetectable :D :D
may 27 10: cd4 655 (32%) vl undetectable :D :D

Now accepting applications from blowjob ninjas™

Offline newt

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Re: shouldn't that test be Negative?
« Reply #11 on: September 12, 2007, 03:58:16 AM »
Here is the product info from Orasure for the OraSure HIV-1 Western Blot. It is a confirmatory test using an oral swab designed to confirm/refute a first screen with a different test, in Secret's case this seems to be the Vironostika HIV-1 Plus O Microelisa, again an oral swab. The Plus O includes reactivity to sub-type O, hence its name. These are both antibody tests. 

A positive reaction on both tests indicates you are likely to be HIV-positive.  This needs confirmation with a blood test. The 2 tests in question are highly senitive and specific, but there are problems with oral tests on kit handling, interpretation of reactivity, integrity of samples and the like. Hence the blood test.

The correct thing for the nurse etc to says here is "You have a positive reaction on both tests. It is very likely you are HIV-positive, but we need to do a blood test before we can be certain".

Hope this helps.

- matt
"The object is to be a well patient, not a good patient"

Offline SecretKeeper

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Re: shouldn't that test be Negative?
« Reply #12 on: September 13, 2007, 09:08:47 PM »
Well today I went to the Virology Clinic today where my husband goes.  I asked them to preform another test and they said there was no need to since my Western Blot test already came back positive.  So they drew something like 12 vials of blood to check CD4 and VL counts and to see if I have any other "fun" diseases floating around in my body.  I'll go back October 5th to get a complete physical and have them tell me what the results were.

I'm pretty pissed off by the whole medical community right now.  Basically almost every time I've asked to be tested they have told me there is no reason to.  I don't know what to believe anymore.  I am so frustrated.  I'm frustrated with the fact that I feel like I'm being treated as a statistic and no one is listening to anything I ask or say because they know everything.  And basically the nurse today might as well said that my husband was/is cheating on me.  (I know that is not the case.  Trust me, I know.)  But the more I think about it, even if he was, what business is it of hers?  Also, doesn't she think I'm already dealing with enough this week?  Ughhh!

What if my counts are good?  Like what if my CD4 is considered "normal" and my VL is less than 30 - does that mean I'm probably negative?  Right now they keep bringing up meds.  Saying that I caught it really early and if my numbers are good meds might be a great option for me.  Any thoughts on any of this?  I sure could use some guidance because I feel like this clinic is not always looking out for my best interest.  Heck, I could probably start a whole separate post on how frustrated I am with this place, but as of now it's my only option.

Offline MOONLIGHT1114

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Re: shouldn't that test be Negative?
« Reply #13 on: September 14, 2007, 01:19:26 AM »
I'm pissed that the nurse passed judgment as to your husband sleeping around.

The BITCH.  Talk to her boss.
HIV+ since '93, 1/12 - CD4 785 and undet.   WOO-HOO!!

Offline Ann

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Re: shouldn't that test be Negative?
« Reply #14 on: September 14, 2007, 05:48:29 AM »

What if my counts are good?  Like what if my CD4 is considered "normal" and my VL is less than 30 - does that mean I'm probably negative?  Right now they keep bringing up meds.  Saying that I caught it really early and if my numbers are good meds might be a great option for me.  Any thoughts on any of this?  I sure could use some guidance because I feel like this clinic is not always looking out for my best interest.  Heck, I could probably start a whole separate post on how frustrated I am with this place, but as of now it's my only option.


Hi SK, sorry to hear you got lumbered with an insensitive, busy-body nurse. Don't be afraid to tell people like her to mind their own damned business. If more people stood up to people like that, maybe the busy-bodies would start thinking twice before they opened their traps.

If you live in the States, you should be able to be retested somewhere other than this particular clinic. Go to the HIV testing center database and enter your ZIP code to find somewhere near you.

Although the VL is usually very high in the first few months of infection, it isn't always. However, if your VL does come back very low or undetectable, you should retest, if you haven't already by the time your results from yesterday come back.

It is rather likely that you have been infected, but as long as there's a margin of doubt (and I'd say there is, given the testing methods used), it's worth investigating. As I've said before, hiv is nothing to guess about one way or the other.

When dealing with a new infection, there are many differing opinions as to when to start meds. I'm of the opinion that one should wait until they're actually needed, because this may be years down the line. Others believe it is best to hit hard and early, as the saying goes. This is something you'll have to research for yourself and form your own opinion, and then talk it over with a doctor you trust. As I've said before, the Lessons are an excellent place to start learning about the "when to treat" question.

And remember, the choice of whether or not to start meds is ultimately yours, not the doctor's. You are the person who has to take them every day, like clockwork, and you're the one who has to deal with the changes they make in your life. Just make sure you're making an INFORMED decision.

Ann
xxx
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 newt

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Re: shouldn't that test be Negative?
« Reply #15 on: September 14, 2007, 06:12:15 AM »
I am sorry to hear about your nurse's bedside manner.

On the re-test, in the UK, any oral test, however reliable, would be checked with a blood draw.

The benefits of early treatment have some research to support this intervention but are, still, unproven wither way.  If yo want to go into this more maybe a new thread? since it seems a popular topic and wold put all the discussion in one place.

Keep the fighting spirit up.  Clinic staff need to have their place in the picture explained in short words sometimes, especially where to put their opinions.

- matt
"The object is to be a well patient, not a good patient"

Offline SecretKeeper

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Re: shouldn't that test be Negative?
« Reply #16 on: September 14, 2007, 10:35:36 PM »
Thank you so much everyone.  Your information and support is exactly what I need right now.

As for the nurse - my response was "This is more complicated than you will ever know." and gave her a glaring look.  >:( That was the best I could come up with at the time.  I was just proud that I mustered that - I'm normally the meek, complain about it later to everyone else but never do anything about it kind of girl.  I discussed it with my husband and we're considering filing a complaint with the clinic about her.  Still not sure on that, because I'm trying to focus on my hubby's and my own health right now and the decisions that we may need to soon be making about that.

I checked with the clinics in the near area and they said they will not retest since the western blot already came back positive.  So I suppose I will have to wait for my first set of labs to come back.  When they do come back I'm thinking that I would like them to draw another set that day since it will have been 3 weeks since my first set.  I've read that this helps establish a base line.  And if they are pushing the meds after that first set comes back I really would prefer another draw and a second opinion on starting the meds.  And thanks Newt - I think I probably will start another tread on the topic - I'd like to be as informed as possible when I go in next time.

Anyway, thanks again everyone.  You are very much appreciated!  ;)

Offline xyahka

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Re: shouldn't that test be Negative?
« Reply #17 on: September 15, 2007, 11:00:25 AM »
Hi, so sorry to read everything you are going through...  I was wondering (as i don't know how the things work in the USA) if there is a chance for you to go to another clinic (or another city nearby) and get a western blot without telling them you have already tested poz in a previous one.

Off course i am just speaking out my mind but here for exemple i could get tested anywhere without even telling them my real name.... in latin america there is nothing money cannot fix (so sorry to say that... but it is true).

Sending you lot of good vibes and support.

Juan Carlos
13/03/07 1er diagnóstico /Peso: 79kg
19/04/07 CD4: 494 /CViral: ?? /Peso: 80kg
19/07/07 CD4: 659 /CViral: ?? /Peso: 79.5kg
06/03/08 CD4: 573 (después de meses muy deprimido) /CViral: ?? /Peso: 79kg
17/09/08 CD4: ?? /CViral: ?? /Peso: 84Kg
06/02/09 CD4: ?? /CViral: ?? /Peso: 85Kg /HCV: Neg /HBV: Neg.
07/03/09 CD4: ?? /CViral: ?? /Peso: 87Kg / Gym 3días/semana y Natación 2días/semana.
12/05/09 CD4: 470 /Cviral: ?? /Peso: 87Kg.
08/07/09 CD4: ? /CViral: ? /Peso: 77Kg.
09/12/09 CD4: 510 /CViral: ? /Peso: 78kg. No medicinas aún
10/01/10 CD4: ? /CViral: ? /Peso: 76Kg.
15/05/10 CD4: 320 /CViral: ? /Peso: 76Kg.
01/02/11 CD4: 291 /CViral: ? /Peso: 78kg.
05/05/11 CD4: 366 /CViral: ? /Peso: 78kg.
27/07/11 CD4: 255 /CViral: 138000 /Peso: 78kg.

Disfrutando y aceptando una nueva vida...

Offline Ann

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Re: shouldn't that test be Negative?
« Reply #18 on: September 15, 2007, 11:30:15 AM »
Hi SK,

I was thinking along the same lines as Juan, but you wouldn't ask for a WB, you would just get whatever standard ELISA the clinic uses. If you go in asking for a WB, they'll want to know why.

You shouldn't have to tell the clinic anything other than you've been at risk through unprotected intercourse. They can't just refuse to test you.

Keep us posted...

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

 


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