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Author Topic: HIV anxiety
Jill Valentine
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I've been sexually active for almost 8 years now and never once have I worried about STDs/HIV. Recently, I posted a question here and Heather made a good point about routine STD testing. I honestly have never had one, because I've only had sex with two guys. One was a virgin before we met, and the other had only had sex once with one girl. Both were incredibly decent and trustworthy people, and 100% not drug users, etc.

I guess the question raised about STD testing finally hit home recently, and out of the blue, I started worrying nonstop about HIV. Not other STDs, though I know there are some other very serious ones out there, but everyone knows HIV is the deadliest. And so the title of this thread, because I'm exactly that - very anxious about HIV.

In the space of a week, I went from knowing almost nothing about HIV/AIDS to being incredibly knowledgeable, because I've scoured every possible piece of information I could find on the internet, statistics included!

As for my personal risk assessment, I can already eliminate one of my two ex-partners as a possible source. Although he was never tested, I have no doubt that he was a virgin and that he didn't lie to me, and not being a IV drug user or someone who might have needed blood transfusions, I have ruled him out completely as a "risky encounter".

The other partner, as mentioned before, had only had unprotected sex once with one girl. He is also circumcised. I didn't know this girl personally, but I know the basics about her - name, age and race. Based on this information and the huge amount of research I've done about HIV prevalence, female-to-male transmission and other factors, I know that the chances of her being HIV positive when she had sex with my partner was very, very low. I've had unprotected sex with this partner a few times but he never ejaculated. It's also been about 10 years since my partner had sex with that girl. If he'd caught HIV, it's likely he'd be sick by now without treatment.

I accept the fact that just by having had sex with a person of unknown status, regardless of how few partners they had or how little sex they'd had, puts my risk at "not zero". But realistically, I also know that my risk is vanishingly low.

My problem is I can't stop worrying and obsessing about it, and I get the feeling that doing all this googling only feeds my paranoia. You might be wondering why I don't just get tested for peace of mind. I plan to, but not until I return home from vacation, in about 2 weeks' time, so I have a waiting game to play.

If any of you have read this far, I should probably stress that this thread is more to do with "anxiety" and less to do with "HIV", though the anxiety is of course related to HIV. I'm not sure how to just relax and stop worrying, at least until I get that test done to confirm my status, which I expect to be negative. I tell myself to stop looking things up online, but it's hard to lose this habit. I've always worried about things from time to time - pregnancy, health, money, relationships, work - you name it, I've worried about it. HIV isn't the first and won't be the last thing I lose sleep over.

Eventually I will stop worrying about something and get over it. A test confirming I'm HIV negative will put an end to this ridiculous worrying once and for all, though I won't lie and say I haven't worried about the possibility of false results. Yes, that's how OC I can be. But I've stopped worrying about that now, so I'm just looking forward to getting tested. Until then, do you guys have any tips for controlling this kind of anxiety?

It REALLY isn't about my risk of having HIV. I know it's very low based on research and CDC statistics, but I can't seem to stop thinking of the "what if's" and such. Before you suggest psychological counselling, I just want to say I'm not that badly affected yet. I'm still enjoying my life, but those worries just surface every now and then. Have any of you worried this much about a possible STD? I can overcome this and I know I will, but any advice from the experts here would be much appreciated. [Smile]

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Robin Lee
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Hi Jill Valentine,

Before addressing this, I do want to point out that lots of decent and trustworthy people either have a sexually transmitted infection, or have had one in the past. Decency and trustworthiness have nothing to do with whether someone will or won't have an STI. [Smile]

In terms of your fears, let's start simple: What things usually help you when you are worried or anxious about something? Are those things that help you with those emotions things you can do while you're on vacation?

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Robin

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Jill Valentine
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I really understand your comments on trustworthiness. Some people pass on infections unknowingly, so we can rarely be sure.

As for health matters, educating myself helps. That's why I've looked up HIV so many times, but then I realize not everything on the internet is accurate or reliable. Some is just scaremongering, especially from people spouting so-called "facts" without citing any sources. Having already gone through plenty of medical journals and studies on the topic, I think I'll try and stop from now on.

I'm feeling less worried already, so spending time with my family and doing other activities like listening to music or thinking about my other priorities mostly help to calm me down.

I'm wondering if it's common to be so anxious about HIV or other STDs? All my friends tell me I'm paranoid, but I'm beginning to feel a bit naive and irresponsible for not having been tested all these years.

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Heather
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Well, honestly, I'm not even an anxious person, but I'd be anxious about STIs, too, if I'd been sexually active for a long time and had never been tested.

So, I'd be curious to see what happens with this anxiety once you do get tested. If testing puts it to rest for now, then I think we can know this was probably mostly about not having taken care of that.

If it doesn't make the anxiety mostly go away, then let's dig a bit deeper?

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Robin Lee
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I'm in agreement with Heather that getting tested seems like a reasonable place to start with figuring out this anxiety. Depending on where you're vacationing, and whether you feel like dealing with getting test results while on vacation, testing sooner than two weeks may be a possibility.

Do you want or need to talk about where or how you can go for testing?

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Robin

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Jill Valentine
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I'm around people who don't know I've been so worried, plus I have no means of getting to any clinic here and I don't really speak the language, so the inconvenience of trying to get tested here seriously outweighs my anxiety, as severe as it has been. Ideally, I can discuss with the clinic staff in English about my anxiety, sexual history, etc. and that's something I can't do on vacation.

There is an excellent clinic back home that I'm planning on going to, because they provide rapid walk-in HIV testing and I've also heard their service is really good and friendly, so I have no problem waiting until I get back to go there.

I'm 100% sure getting tested will make this anxiety go away. It's actually improved a lot already, after I did some thinking last night and realized I really have nothing to worry about. My chances of having caught HIV are about as remote as my chances of getting hit by lightning tomorrow.

But I do know I've been feeling worried based purely on fear and paranoia, not on reason and logic. I'm actually getting tested the minute I leave the airport, so I'll let you guys know the results in any case. I've been feeling better already. Thank you for the input. [Smile]

As for testing for other infections, do you guys know if one sample of vaginal fluids is enough to test for the other STIs like chlamydia, gonorrhea, etc? Would be nice to know if I could get tested for every STI known to man in just one visit.

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Heather
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When you go for a full STI panel, your doctor or clinician will take all that they need to do all the tests. namely, usually a blood sample, a urine sample, and a sample of your vaginal fluids and cervical cells, as well as doing a visual and bimanual exam.

You don't have to try and manage this for them: it's their job to get what they need to run tests, not yours. You just need to be sure to ask for whatever tests it is you want so they know what they need to collect and do.

For more, see: Testing, Testing...

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Heather Corinna, Executive Director & Founder, Scarleteen
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Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has. - Margaret Mead

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Jill Valentine
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Thanks Heather, good to know. I'm feeling so much better now. Now just to wait and get tested. [Smile]
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Heather
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Sure thing.

Now, I really have to all but demand you go and enjoy that vacation. What a luxury, a vacation! All the more so if you're not paying for it! They are supposed to be to give you help letting GO of stress and worries, after all. [Smile]

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Heather Corinna, Executive Director & Founder, Scarleteen
About Me • Get our book!
Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has. - Margaret Mead

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Jill Valentine
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I haven't paid for anything but the plane ticket. It's still wonderful to spend time with family and friends, though. [Smile] I was beginning to get upset that I was ruining my vacation with these worries, but thankfully common sense is taking over!
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Jill Valentine
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As promised, I'm here to report back the results of my HIV test which I have now taken - negative! The nurse at the clinic told me they perform hundreds of HIV tests per day and anxiety is not uncommon. The test was very easy to do too - total testing time and time taken for the results to be read were not more than 60 seconds.

Thank you Scarleteen, for trying to put my mind at ease all those weeks before. [Smile]

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Robin Lee
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HI There,

I imagine that was a huge releif, both to get the negative result and to hear that your anxiety wasn't unusual. [Smile]

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Robin

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Jill Valentine
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Sorry to bump a fairly old thread but I thought it would be better than making a new one, since it's on the same topic.

So, as mentioned above, I tested negative for HIV. At the time of testing, it had already been 3 years since I last had sex with a person of unknown status, so I was well past the window period. The test that was used on me was the FDA approved "INSTI" rapid antibody test that gave me the result in 60 seconds. I'm sure you guys are familiar with this test? The nurse took a fingerstick blood specimen to do the test.

The reason I'm posting here again is because, although clinics mostly use fingerstick blood for the INSTI test, I've also read that venipuncture blood and plasma are acceptable. And then, on some other websites talking about blood specimens in general, the authors mentioned that, when taking blood from a finger prick, it's always better to wipe off the first drop and take the second because the first might be contaminated with tissue fluid and give inaccurate test results. Apparently, health professionals do this when testing fingerstick blood for glucose level or lead.

So I went back to bioLytical (the people who developed INSTI)'s website and had a look at the insert leaflet for the test kit. It didn't mention wiping off the first drop of blood as a necessary step.

Basically, my question is, was the test performed correctly if the nurse didn't wipe off the first drop of blood? I just want to make sure my result is 100% accurate.

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Heather
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Jill: unfortunately, I don't think anyone on our staff, including myself, is currently working in clinical services with the current training for the most up-to-date protocols for testing so we'd have this kind of super-specific information you're asking for.

I'd suggest that who you talk with -- if you're not satisfied with what you saw at the test's website itself, which I, personally, would be -- about this is any staff at the clinic where you get your testing or, if you feel you can't trust that clinic for some reason, or want a second opinion, that you consult with a different clinic which does HIV testing.

[ 05-16-2013, 04:24 PM: Message edited by: Heather ]

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Heather Corinna, Executive Director & Founder, Scarleteen
About Me • Get our book!
Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has. - Margaret Mead

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Jill Valentine
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I'll have to do that, then. [Frown] I just think it's lame that, on the INSTI site, it says that finger stick blood yielded one false-negative while none of the venipuncture/plasma specimens did for the same test subjects, yet they didn't explain why. I've also seen one nurse on a YouTube video wipe away the first drop of blood when they performed a rapid antibody test on a patient, but in all the other videos, people didn't seem to so this.

I understand this is becoming a very specific question, so I appreciate any answers. I'm just hoping to hear from others who have had a rapid HIV test using finger stick blood, just to see if it's standard procedure to use the first drop of blood.

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Heather
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Honestly, from a personal testing standpoint -- as in, when I've been tested -- it's just never something I've even paid any attention to. I couldn't recall for the life of me, with this blood testing or any other, if that was done or not.

I grew up in and around healthcare, so I tend to figure that most people working in that care a) adhere to the code of ethics required, b) want to do the best they can by patients, and c) want to keep their jobs. I also know from working in and with some clinics how hard most people work to be sure they do things properly. Especially with a virus as potentially deadly as HIV, and where early detection really matters.

Not sure if any of that helps you out, but it's what I've got.

--------------------
Heather Corinna, Executive Director & Founder, Scarleteen
About Me • Get our book!
Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has. - Margaret Mead

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Heather
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(You know what, though? I just realized my mother -- who's worked in infectious disease control her whole life and administers hospitals in this capacity -- might know. let me toss her an email and see for you, in case she does.)

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Heather Corinna, Executive Director & Founder, Scarleteen
About Me • Get our book!
Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has. - Margaret Mead

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Jill Valentine
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Thanks, Heather! Patiently awaiting your mother's response. [Smile]

By all means, this stuff is really informative and seriously educating me anyway so, I would be glad to know even if it doesn't pertain to me.

Anyway, what worried me a tiny bit was this:

http://www.fda.gov/downloads/BiologicsBloodVaccines/BloodBloodProducts/ApprovedProducts/PremarketApprovalsPMAs/UCM235249.pdf

The package insert that comes with the test kit, and that information comes straight from the company that developed and manufactured this test. On page 9 there, the sensitivity of the test with regards to finger stick blood is only 99.8% whereas with plasma and blood drawn from the veins, it's 99.9%. This is because 22 positive individuals gave 3 different types of blood specimens and only the finger stick blood came back with a false negative. Why on earth? I'm curious, if not anything else.

Also, this article: http://voices.yahoo.com/venipuncture-vs-finger-stick-which-better-fo-drawing-617660.html

As for what you said about healthcare professionals adhering to a code of ethics for testing for infectious diseases, maybe this writer has a point?

quote:
Many nurses, in hospitals do not get adequate training when they do a finger stick on a patient. Phlebotomists are adequate at performing finger sticks because they are properly trained. What am I referring to you maybe asking it just wipe with alcohol, wipe, stick with lancet, then drop of blood right. Yes and no is my answer. There is one step, which many forget to do, they forget to wipe the first drop of blood off, and get the second drop to test.

Why you might be asking do I want the second drop to test? The answer is that first drop is contaminated with tissue fluid, which can dilute a sample and give an inaccurate reading. Many times diabetics will say that the reading they get from the venipuncture sample does not match what they got from the finger stick reading. Many time it because they used that first drop. When asked the next time to use a second drop and get a venipuncture sample to make sure the glucose meter they are using is working ok, the results are generally only a few point differences.

The purity of the blood sample seems to matter when things like glucose, cholesterol, lead, etc are being tested, but nobody has mentioned anything about serious conditions like ?.

So, with that in mind, plus the test kit manufacturer not explaining how and why the false-negative from the finger stick blood happened, how are we to know that finger blood stick doesn't "sometimes" just fail to give accurate results? That's what I mean. [Frown]

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Heather
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You know with that first bit, per the 99.8% and 99.9%, I'm willing to bet no one would say that was a statistically significant difference AND we probably also have no way of knowing if that difference really had anything to do with that one being a finger stick.

Really, one thing to know is that training for HIV testing tends to be pretty intensive. Not everyone in a given clinic is usually okayed to do it.

I'm also only going to put so much stock in a yahoo article, myself. It's just not somewhere I'd ever look for information I could rely on. Not never. (And when the author can't even manage to use correct grammar and spelling, I'm doubly wary.)

quote:
So, with that in mind, plus the test kit manufacturer not explaining how and why the false-negative from the finger stick blood happened, how are we to know that finger blood stick doesn't "sometimes" just fail to give accurate results?
Or, for that matter, if this isn't just a matter of NO way of testing being 100% effective. In other words, ANY way of testing, for anything, including HIV is never going to be iron-clad and results for any kind of test, for any number of reasons, will sometimes be inaccurate.

That's really where I'd land with something like this. I'd also remind myself that HIV testing isn't a one-time deal, ideally, but testing we all get done more than once, on whatever schedule our lifestyle and healthcare provider suggest is best. So long as I do that, I figure any one test only carries so much weight anyway, if you follow.

(Regardless, when I hear back from my Mom, I'll give a holler. Given she's someone I have personally watched correct nurses, doctors and other healthcare workers when doing tests, as part of her job -- and watched them shudder in fear, no less -- she's the best I've got for this, and I'd certainly trust what she has to say over anything I'd see on YouTube or read at yahoo, etc. And not just because she's my mother. )

[ 05-16-2013, 05:55 PM: Message edited by: Heather ]

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Heather Corinna, Executive Director & Founder, Scarleteen
About Me • Get our book!
Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has. - Margaret Mead

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Jill Valentine
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Well, that Yahoo article isn't meant to be the authority on the tissue fluid contamination issue - this has been mentioned by many other sources so I'm sure it's not exactly a myth either. But, thinking about it for myself, I'm not sure if testing for glucose/cholesterol level in the blood is the same thing as testing for antibodies. If dilution is a problem to begin with, the test wouldn't be performed with the sample diluent. I'm also highly doubtful that the test manufacturer wouldn't make a point of this if it were a real issue in HIV testing.

I get that no test is 100% accurate, but being the kind of nitpicky person I am, the "unknown" or "unexplained" tends to bother me. For example, the test manufacturer warned that HIV positive people on highly active antiretroviral therapy (HAART), with a bone marrow tumor or with elevated hemoglobin may get a false-negative result, so I assume (hope?) that all the false-negatives obtained in the clinical trials are accounted for through these factors.

My personality is just a bit obsessive and paranoid when it comes to health issues; I might even label myself as hypochondriac. If anything, that probably explains why I want to know these things. I sure hope your mother can shed some light on all this.

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Jill Valentine
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In fact, could I get your opinion on this, Heather?

Where it says "limitations of the test" on page 8 of this insert, the following warnings are given:
quote:
8. Patients that are receiving highly active antiretroviral therapy (HAART) may have undetectable levels of antibody to HIV-1 and give a false Non-Reactive INSTI HIV-1 Antibody Test result.
9. Specimens from patients with multiple myeloma, may result in false Non-Reactive or invalid results with the INSTI HIV-1 Antibody Test.
10. Patients with elevated hemoglobin levels may test false Non-Reactive with the INSTI HIV-1 Antibody Test.

Reading through that, what do you think?

Of the 1,858 individuals tested in the clinical trials, only 3 had a result that came back as false-negative. I think that's pretty excellent for a 60-second test that could help millions of people know their HIV status in an instant.

Incidentally (or coincidentally?), the manufacturer has stated 3 possible reasons why a false-negative might occur: HAART, multiple myeloma, elevated hemoglobin.

How much money should I bet that those 3 factors also explain why 3 infected people in the trials got a false-negative? I can't imagine that they got those reasons from nowhere, and most likely it's from the very same people they tested on.

I honestly believe this test is fantastic, even if it's not perfect - of course, no test is - and I highly recommend it to everyone. I also have a lot of faith in the manufacturer and if they had obtained false-negative results, I believe they would have accounted for those, or at least tried to. I mean, false-positives can happen for all sorts of reasons but statistically, false-negatives past the window period do seem extremely rare, so should I be any bit satisfied that I might have come close to answering my own question?

If the levels of antibody in a finger stick blood specimen isn't high enough, that would explain why the test couldn't defect any HIV antibodies. Correct?

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Heather
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Sure, but again, I want to qualify by saying that I'm not currently working in-clinic and I'm not trained to do HIV testing, okay?

I would agree with you that the numbers in that trial are excellent and that 3 is a very small number, especially when you consider how unpredictable bodies are and how much they can vary.

I'd also agree with your thoughts about those three factors being the most likely contributors to the false negatives.

Personally, I'd be more than satisfied with all of this. Especially since the PDF from the company has very explicit directions about collecting for the finger prick, very explicit, and they don't include any notation whatsoever about taking that first droplet or not.

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Heather Corinna, Executive Director & Founder, Scarleteen
About Me • Get our book!
Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has. - Margaret Mead

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Heather
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The other thing I'd add here -- haven't heard back from my Mom yet, btw, but not surprising since again, she basically runs a hospital -- is that if you feel your test wasn't done correctly, the clinic should be offering to redo it.

In other words, if you called them and told them the test was done in a way that is counter to protocol and the manufacturers instructions, I can pretty much assure you *they* would be begging *you* to come back in and retest. No sound clinic wants to flirt with malpractice or putting a patient's life at risk, seriously.

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Heather Corinna, Executive Director & Founder, Scarleteen
About Me • Get our book!
Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has. - Margaret Mead

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Heather
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Speak of the devil:

"If it's there, it's there. The sensitivity and specificity are not 100 percent so there is a chance of false negative as with any screening test." - Heather's Mom

In other words, if HIV is present, it's going to be present in any blood used to test and show up on the test, first drop or second, accounting for the lack of 100% accuracy of ANY test.

She added that if you just can't let this go, your best answer is probably just to take the full blood test so you can put these worries to bed. But she sees no cause for concern, and my mother is about fifty kinds of stickler with healthcare protocols. It's why hopsital staff tend to quake in their boots when she's around (I've seen it, it is both terrifying and impressive all at once, and I feel for them: I think I felt like they do through much of my adolescence [Razz] ).

[ 05-16-2013, 07:17 PM: Message edited by: Heather ]

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Heather Corinna, Executive Director & Founder, Scarleteen
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Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has. - Margaret Mead

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Jill Valentine
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Earlier on, I went ahead and emailed bioLytical. Nothing better than hearing it from the horse's mouth. I did ask a very specific question regarding the sensitivity of the test for finger stick blood, and I got this reply:
quote:
Thank you for contacting bioLytical. With regards to your question on the accuracy of INSTI, extensive clinical studies demonstrate proven accuracy of ≥ 99.8% sensitivity & ≥ 99.5% specificity. Recently during our CLIA trials, those results were ≥100% sensitivity and ≥99.77% specificity.

If the subject number is large enough, there is bound to be false negative with any type of diagnostic assay.

Unfortunately, she didn't address my question specifically enough, nor did she mention how many people were tested in the more recent trials, but 100% sensitivity the second time round is pretty reassuring.

Heather, your common sense is appreciated even if you're not trained in HIV testing. [Smile]

In this published article (which relates to antibody testing for measles and rubella, not HIV, but still), the abstract mentions that "there was no significant difference in antibody levels from blood obtained by either method". From the wording alone, that seems to imply the contrary that antibody levels can sometimes differ, even if very slightly, in finger stick vs. venipuncture blood, which would fit neatly with my theory in the above posts.

But yes, I really agree with you there. The test kit makes no mention of wiping off the first drop. Neither did the official video instructions from the manufacturer. I'm pretty confident now that my test was performed correctly. Though, to be honest, I doubted everything the first day I got out of that clinic. I even wondered if the results could be accurate seeing as they were read so quickly. 60 seconds seemed like an amazingly short amount of time to test for such a deadly virus.

As for speaking to my clinic, I honestly have no idea if the receptionist who picks up the phone would know how to answer my complicated questions. That's probably what stopped me from calling them up in the first place.

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Karybu
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If you do call the clinic, the receptionist wouldn't likely be the one answering your testing questions: they would let you talk to a nurse or doctor, or get that information for you and call you back.

Seriously, though, I think Heather's mom is right on with this. You can be confident that you got an accurate result.

--------------------
"Another world is not only possible, she is on her way. On a quiet day, I can hear her breathing." -Arundhati Roy

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Jill Valentine
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Thank you both, and Heather's mom, too. I really appreciate you guys taking the time. [Smile]

I don't know if I should feel as silly as I do right now. Sometimes, I think that's just me. I worry too much about everything.

I can accept the chances of false negatives, but I do believe they happen for a reason, whatever the reason might be. Well, hopefully I'll stop obsessing now.

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WesLuck
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There are a lot of bad things that can happen in the world (and as long as you don't get carried away with horror stories in the mainstream media) it is comforting to think of how rarely the bad stuff actually happens, especially when you are generally careful. I mean, there are billions of us in the world, and a lot of us have very normal lives, despite sometimes quite difficult circumstances. Some bad stuff happens, sure, but of all the bad things that could happen, the really bad stuff just doesn't seem to happen as much as it would if it were truly random.

Note, this is my intuition and "gut-feeling" speaking, but it seems to hold true based on my experience, since a number of times I have almost had serious or potentially crucial things happen to me (like nearly getting run over, or backing up my complete system image just a little while before my computer's hard drive failed) and I haven't had a bad outcome, when based on probability I probably would have been a lot worse off.

Anyway, it can help to be a bit easier on yourself with regards to diseases, as excessive worrying or stress can sometimes make it more likely to get "dis-ease". Your immune system works all the time - it doesn't get any days off, so it's good if you can be at ease now. [Smile] Especially when Heather's mum has essentially given a strict all-clear! <grin>

And I hope you have a great year too! [Smile]

[ 05-19-2013, 07:37 AM: Message edited by: WesLuck ]

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LissaCroft
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I'd been sexually active for a long time and had never been tested.I'm 100% sure getting tested will make this anxiety go away.
As for health matters, educating myself helps. That's why I've looked up HIV so many times, but then I realize not everything on the internet is accurate or reliable. Having already gone through plenty of medical journals and studies on the topic

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