AnxietyFilter: had a risky sex encounter 8 months ago, just tested HIV-negative, and still going a little crazy. Help?

October 16, 2009 1:32 PM

AnxietyFilter: had a risky sex encounter 8 months ago, just tested HIV-negative, and still going a little crazy. Help?

About eight months ago, I had unprotected receptive anal sex with a guy (I'm a guy) I later found out is HIV-positive. Incredibly stupid of me, something I had never done before, and very out of character. I had no exposures since. I went into complete freak-out mode and, mostly because of anxiety, did not get tested until just last week. I had an OraQuick Rapid blood test done, and it came back negative. Whew. I felt an enormous amount of relief for the first few days following the test, and then the anxiety started to come back as I started thinking about the possibility that it may have been a false negative.

I have another test scheduled for next week. My hope is that a second negative result will finally put my mind at ease. In the meantime, though, I am a complete wreck and can hardly function. Is it completely irrational of me to be worried about getting a possible false negative on a rapid blood HIV test? Or is it a real possibility, no matter how small? Are there any studies or other scientific data on false negative results (my own Internet searches have been less than successful)?

I may just need someone to shake me and say "Stop worrying." I think I have just lived with it for so long that I still cannot get past the idea. Again, I hope that the second test will help - but in the meantime, can you guys give me an idea if I am being crazy for no reason?

posted by anonymous to health & fitness (26 comments total)

I'm not sure if you were counseled about this when you got tested, but, extreme anxiety is very common for people when they get tested for HIV with or without a history of risky behavior.
posted by a22lamia at 1:37 PM on October 16

Here are a few things which point to "Stop worrying."

1) In the clinical studies by the manufacturer (OraSure Technologies, Inc.), the OraQuick test correctly identified 99.6% of people who were infected with HIV-1 (sensitivity) and 100% of people who were not infected with HIV-1 (specificity).

Yes, it's a study by the manufacturer, but still. It's a good accuracy rate.

2) Delayed detection of exposure: OraQuick may not detect HIV-1 infection in people who were exposed within 3 months before being tested (it can take that long for antibodies to HIV-1 to be detectable in the blood).

Because you've waited eight months, if you do have HIV, it's highly likely the antibodies are in your blood. So that gives your negative result a bit more credence. But remember, "As is true of all HIV screening tests, a reactive test result needs to be confirmed by an additional, more specific test." So you're on the right track by scheduling the second test. I hope it turns out well.

All info from here.
posted by lholladay at 1:41 PM on October 16 [4 favorites]

It's not irrational. I think your real worry would be not that it was a "false" negative, but that the virus just hasn't presented itself-- I believe it can take quite some time for the virus to incubate before a blood test will be accurate. A second test is a good idea.

That said, as long as it was just the one encounter, you're honestly probably fine. Channel the panic you're feeling now into motivation for being way more careful in the future.
posted by oinopaponton at 1:43 PM on October 16

I am soooo not trying to be an asshole here, but... I think you have every reason to be feeling all the anxiety you are feeling. I don't know the percentage of false negatives, but anything is a possibility. My hope for you is that the second test comes back negative as well. And, when it does, please never forget how these months felt. I know it was out of your character, and truthfully, most people have also had one of those moments. Just don't forget that you were lucky. So, to answer one of your questions, you are not being irrational. I hope everything turns out good (and negative).
posted by AlliKat75 at 1:44 PM on October 16

This page from the CDC says that in the manufacturer's clinical studies "the OraQuick test correctly identified 99.6% of people who were infected with HIV-1 (sensitivity) and 100% of people who were not infected with HIV-1 (specificity)."

If that does not make you feel at least a little bit better, then yes, your fears are irrational... but that does not mean that they are unusual. Being re-tested probably won't make you feel better (there's still "a real possibility, no matter how small" that you will get another false-negative), but perhaps arranging for a different test will alleviate your anxiety somewhat?
posted by onshi at 1:46 PM on October 16

You've had a huge scare and have been carrying a lot of anxiety. Anxiety is a habit that is hard to put down. It has a life of its own in a way. Allow yourself time to readjust to life without balls-on freak out anxiety. It will take its time. The second negative (*knock on wood*) will help.
posted by milarepa at 1:50 PM on October 16 [1 favorite]

It's my understanding that false negatives happen mostly during the window period (and there's only a 1% chance that you're in this period after 8 months). This may calm you down a bit:

Antibody tests may give false negative (no antibodies were detected despite HIV being present) results during the window period, an interval of three weeks to six months between the time of HIV infection and the production of measurable antibodies to HIV seroconversion. Most people develop detectable antibodies approximately 30 days after infection, although some seroconvert later. The vast majority of people (99%) have detectable antibodies by three months after HIV infection; a six-month window is extremely rare with modern antibody testing.

From here.
posted by meerkatty at 1:50 PM on October 16

Don't ever have unprotected sex without knowing your partner's sexual status again. Don't ever have unprotected sex without knowing your partner's sexual status again. Don't ever have unprotected sex without knowing your partner's sexual status again. Don't ever have unprotected sex without knowing your partner's sexual status again. Don't ever have unprotected sex without knowing your partner's sexual status again.

Also: you're fine. You're supposed to wait for 3 months to get tested anyway. Get a second test, but you're fine. You're fine. You're fine. You're fine. You're fine. You're fine.

Here's an FDA link: http://www.fda.gov/BiologicsBloodVaccines/BloodBloodProducts/ApprovedProducts/PremarketApprovalsPMAs/ucm091996.htm Clinically, you've got a .6% chance of a false negative. Once your second test comes back negative (most other tests are .003% chance of a false negative, depending on the test), that means roughly a %.0018 chance of a false negative, which means that there's a 1/50,000 chance the test is wrong.

So one last time: Don't ever have unprotected sex without knowing your partner's sexual status again. And you're fine.
posted by Damn That Television at 1:52 PM on October 16 [5 favorites]

I would not stop worrying. I would accept the worrying for what it is, engage the feeling without engaging the facts behind it, and let it pass over you. Focus on the experience of the anxiety, the discomfort, the feeling all electric and nervous, and anywhere in the body you might have muscle tension. Don't think about what could happen or not happen, or the choices you made--these are facts already well understood by you.

The key to anxiety (or any other feeling for that matter) is to feel the feeling and not try and escape it. That just leads to it chasing you around the room.
posted by Ironmouth at 1:54 PM on October 16 [5 favorites]

Your fears aren't exactly irrational - HIV is a very serious disease, after all, and fears that stem from an encounter with the very real possibility of transmission are rational if anything - but after one negative test the fears are less helpful. Unfortunately, I don't know if your fears will go away after the second test anyway, if you're anything like me.

Fear won't help you, though, not after one negative test and another test on the way. I'd do more reading on the way HIV is transmitted, how it isn't transmitted, and the possibility of infection from each risk factor. That is, do some reading on how likely you are to become infected from unprotected anal sex from each unprotected encounter. While that won't erase your fears, it will arm you with your next encounter with the doctor - which questions to ask, what your fears are based on and where they come from, etc.

AFAIK, there is more than one test for HIV infection. If the second test is the same type of test as the first, perhaps you should attempt to schedule a third test of another sort. Regardless, schedule another test a year from the first test.

I'm really just speaking out of my nose here. If you need an anonymous friend though, feel free to memail me :)
posted by neewom at 1:58 PM on October 16

Specifically with regards to the anxiety; You have been feeling anxious for the last 8 months and your body and mind have gotten used to it. It will take time and effort to stop feeling anxious in the future. Part of that effort will include continuing to ease your mind and forming a total resolve to never find yourself in this situation again, which the good people above have already articulated far better than I could.
posted by dobie at 2:01 PM on October 16 [1 favorite]

I think your odds of a false negative from the highly specific ELISA antibody test are quite low, and so you should take the negative result as good news. Different reports seem to indicate a false negative rate between 0.01 and 0.7 percent for a single test (i.e. between 1 in 10,000 and 7 in 1,000).

One report I read notes a three-ELISA-test procedure carries a false negative rate of 0.000457 (i.e. 5 people in 10,000 get a negative result while actually being HIV+), and that report is from 1996. I can only imagine that testing procedures have even higher specificity 13 years later.

If you are HIV-, even if you do receive a positive result with ELISA, because of the somewhat higher likelihood of a false positive (i.e. you are HIV- but unluckily receive an incorrect HIV+ result), that result would still need to be confirmed with Western blot testing.

There is the nonzero chance that the antibodies are not present yet. Or you would be one of the very few and very unlucky individuals in any probability distribution who gets two false negatives. But I'd say the odds are definitely in your favor.

Do get the second test to give yourself peace of mind -- because you're obviously concerned that you are infected, even with your existing test result, and you clearly need the psychological break that this test result would provide -- but do take precautions in the future.
posted by Blazecock Pileon at 2:07 PM on October 16 [3 favorites]

This may be apochryphal, but it helped me understand the nature of drug testing better, so maybe you'll find it useful too.

I was once told that innacuracies in drug tests are selected to minimize the most damaging errors. For example, tests for performance enhancing drugs are best when they give as few false positives as possible. A false positive in that test can ruin someone's career, while a false negative just lets some liars slip through, possibly to be caught later. The best test would never give any false results, but if given no choice but to accept errors, the testers will pick a test that gives very few false positives, even if it means a higher number of false negatives.

So how might this apply to an HIV test? In this case, false negatives are much more dangerous. If you falsely believe yourself to be HIV-free, you are a huge danger to society. A false positive, on the other hand, will undoubtedly be re-tested, but even if it's not, it only damages one person's life rather than putting many others at risk. Therefore, as the numbers above show, any reputable HIV test will minimize if not eliminate false negatives. You can be fairly certain that your negative result is accurate.
posted by martens at 2:19 PM on October 16

This isn't so much about the screening test, but if your partner was taking anti-retroviral meds, it's also possible that his HIV levels were low enough that you were not at much risk of infection.
posted by mandymanwasregistered at 2:52 PM on October 16

In the meantime, consider getting a prescription for an anti-anxiety medication.
posted by ShooBoo at 2:58 PM on October 16

Been in a similar situation (and I've made shady choices and learned from them, so no judging here!) The guy my ex cheated on me with was going around telling people he was positive for HIV (he wasn't, but that's a whole other story). I was petrified. It really helped to tell a close, trusted friend what was eating away at me. It was never far from my mind, until the good news came back.

You had a scare, but you've obviously had a valuable learning experience that will hopefully affect your future decisions. Yes, take that second test. You are going to be okay.
posted by futureisunwritten at 3:01 PM on October 16

You sound terrified because you know you were probably exposed to HIV. HIV is frightening, serious, life-changing. Medical tests are not always perfectly accurate. I think your worry is rational. What will you do if this second test is negative? Can you prepare yourself to accept the results of the second test?
posted by kathrineg at 3:24 PM on October 16

You can get a PCR test sooner than an ELISA or Western Blot, but as you're already at +8 months, that's just something to remember for last time.

What you want to do now is get antigen-specific tests for HSV-1 and HSV-2.
posted by orthogonality at 3:52 PM on October 16

I know everyone has said this, but I will reiterate, you need to calm down. I hope that the statistics quoted will help you in that process, but I do know that no matter what people say it can be hard to reassure yourself that you are -- in fact -- o.k. Get the second test, it can't hurt and can help your state of mind.
posted by sundri at 4:05 PM on October 16

Sorry, my comment above was supposed to go in this MeTa.

Anon, I had a very similar thing happen in the mid '80s. I didn't find out that my partner was positive...actually dying, until she was hospitalized months later. Testing and medical care regarding HIV/AIDS was just super sketchy back then. I got tested and retested for about two years before I was convinced that I was ok.

In the mean time I was so racked with guilt, shame, remorse and anxiety that I lost a about 30 pounds and was convinced that I was sick.

You don't have to do that. 8 months is a really good long time after to be tested and found negative. Testing isn't a crapshoot anymore.

It's totally normal to be/feel like a total wreck in this situation, but you don't have to.
posted by snsranch at 4:29 PM on October 16

Your fear is irrational. You may want to talk with a therapist to work on your anxiety issues.

According to the FAQ on Boston AIDS Action Committee, modern tests are accurate after 6-weeks post-exposure.

Bottom line.

Your non-reactive(negative) test result is valid and accurate. You don't need a retest.
posted by jchaw at 5:38 PM on October 16

Also, you *DO NOT* want to do a PCR test. The test is typically used to measure viral load in HIV positive patients and are very sensitive (or rather "too sensitive").

What this means is that a HIV-NEGATIVE person(yourself), with NO VIRAL load, may end up registering noise in the PCR test. That is, instead of returning ZERO, it incorrectly report a small miniscule amount that is indeterminate.

Now, that will be BAD for you because you will end up WORRYING even MORE!

Bottom line.

Don't do the PCR test. They are VERY EXPENSIVE and will do you no good because you are not HIV positive.
posted by jchaw at 5:47 PM on October 16 [1 favorite]

See if you can find a place that does Nucleic Antibody Testing (also known as NAT). Rather than test for the HIV antibodies, it looks for the actual DNA of the virus.

Also, while your fear may be "irrational" according to jchaw, it's not abnormal, uncommon, or unexpected. The common-sense part of your brain knows you are probably okay, but the guilt part of your brain is going "you freaking idiot" and the worry part of your brain is on overdrive. Don't beat yourself up for freaking out!

Recently, I was having a lot of stomach issues and I took a pregnancy test on the very slim chance that I was preggers. Rationally, I knew that I wasn't pregnant, but man waiting for the test results was the longest two minutes of my life! Obviously not the same as HIV, but similar anxiety.
posted by radioamy at 9:22 PM on October 16

Obviously the chances are overwhelmingly in your favor. If the follow-up test doesn't assuage your fears you may want to think seriously about addressing that anxiety as an independent condition. The part that bothers me is that it was severe enough to prevent you from getting tested when that was the only rational and very necessary course of action. That kind of anxiety can be actively dangerous in your life, and at the least disruptive and counterproductive. Obviously you had good cause but it strikes me as a warning sign nonetheless.
posted by nanojath at 9:53 PM on October 16

Such long anxious episodes may lead to residual neurological impairments and may not be easy to feel "better" again even after negative test result.

You definitely need strong reassurance that you are negative, the second test will hopefully provide that, and also you also need to lead a lifestyle that you do not take any risk of infection whatsoever so the anxiety is not rejuvenated.
posted by neworder7 at 5:01 AM on October 17 [1 favorite]

Hi! You're normal.

I work at an HIV agency with a toll-free line that people can call with questions, and people like you are about 20-25% of the calls we receive. We refer to people like you as "HIV anxious" or the "worried well". We have working groups where we partner with other similar agencies who also hear from people like you, because it is a difficult issue.

TheBody.com has a questionnaire entitled Are You a "Worried Well" Person? with some tips on what to do if you are.

Some basics:

You don't have HIV. Yes, you engaged in a risky activity, but one risky activity does not guarantee transmission, and you were tested long after the window period was over. HIV tests are designed to err on the side of having false positives, not false negatives.

You are anxious. This is normal. You took a risk and you regret it. You acted out of character and scared yourself.

Sometimes people become HIV anxious because they regret their actions and they believe that they deserve to be punished. Since your sex partner was positive, it would "make sense" that you would be punished by [God/the universe/karma] with HIV for being "incredibly stupid." Sometimes they test over and over again because it doesn't make sense to them that they "got away with it." The HIV-negative result doesn't allay the guilt or the regret or the sense that they deserve some sort of punishment in the form of HIV, so they come back for another test.

You did get lucky. I suspect that testing again will not ease your mind. Coming to terms with your actions and how you will deal with things in the future could ease your mind much more. If this rings true for you, maybe you could think of some other way to mark this event and move on. Maybe write a letter to yourself and burn it, or "sentence" yourself to a period of volunteering (maybe at an AIDS service organization!), or do something else to let yourself off the hook. If you are at all Catholic or have another venue in which this would be appropriate, confession could help too. Sometimes it helps to just get it out in the open and share your scary secret with another person who can assure you that things will be okay.

If you do go for another test, I would recommend going to a sexual health clinic for it and talking to the counsellors about how you're feeling. They've seen this before and could help you out.
posted by sadmadglad at 10:01 AM on October 17 [3 favorites]