H

erpes is a lifelong infection, but Lauren had it only for six tumultuous months. Or rather, she believed she did, after a request for sexually transmitted disease testing returned a positive result. But after weeks of Googling, chatting with members of online herpes forums, and reading scientific papers, she asked for a different test, which eventually confirmed her suspicion — her herpes diagnosis was wrong.

In the six months that passed between the tests, the mistake led her to keep a romance at bay and left her anxiously patrolling her health.“Every tingle I would get in my leg or any kind of itch down there would just set me off,” sending her into a new flurry of research, she said. “And that was just to try to calm my own anxiety, but it would only really make it worse.”

Genital herpes, predominantly caused by herpes simplex virus type 2, is a sexually transmitted disease that’s very common — 1 in 6 people aged 14 to 49 in the United States have HSV-2, and this number goes up with age. Most of these people, however, don’t have obvious symptoms and wouldn’t know they were carriers without blood tests.

But blood tests can be highly unreliable. The kind of test used to diagnose Lauren, an IgM test, has long been rejected by the Centers for Disease Control and Prevention but is still used by some clinicians. Meanwhile, the CDC and the US Preventive Services Task Force concur that the most widely available herpes test, called HerpeSelect, should not be used to screen asymptomatic people because of its high risk of false positives: Up to 1 in 2 positive tests could be false, according to the USPSTF’s most recent guidelines.

That high failure rate isn’t, however, always communicated to patients. Online forums abound with stories like Lauren’s, of people who request herpes tests alongside those of other STDs and are shellshocked by the results. Some doctors discourage the testing or simply don’t include it in a standard STD panel without having the conversation. But no data exists on herpes screening rates, according to Kimberly Workowski, lead author of the CDC’s STD treatment guidelines — so it’s difficult to say how many people could be living with the misdiagnosis.

Herpes simplex
A micrograph of herpes simplex virus in a Tzanck test specimen. CDC

Testing pitfalls

Next to the meandering waterways connecting Puget Sound to Seattle’s Lake Washington is the only laboratory in the world that offers to the public the Western blot, the gold standard test for herpes. The University of Washington Clinical Virology Laboratory provides the test to patients across the country, a practice it began over a decade ago when it realized the more common tests were prone to false positives.

The problem, said Christine Johnston, a physician and researcher at the lab, is “low-positive” results of antibodies to HSV-2. The cutoff for a positive result on the HerpeSelect test, manufactured by Quest Diagnostics, is 1.1. A 2005 study published in the journal BioMed Central Infectious Disease found that index values above 3.5 yielded over 90 percent accuracy — but scores between 1.1 and 3.5 had around a 50 percent chance of being wrong.

What’s more, scores falling just above the 1.1 cutoff had an almost 90 percent chance of being wrong.

When tests fall between 1.1 and 3.5, more testing is necessary, said Johnston. This recommendation is also noted in the 2015 CDC Sexually Transmitted Diseases Treatment Guidelines. But some patients will never be referred for a second test.

“I think most clinicians are unaware and perhaps labs don’t have this available and/or it is not straightforward to order,” Johnston said of second-step tests.

But while her facility’s Western blot is considered highly accurate, it is expensive and cumbersome to perform. Each test costs over $200 and the University of Washington is the only lab that provides it.

Other confirmatory tests also exist, for instance Biokit’s HSV-2 Rapid Test and Quest’s own HSV-2 IgG Inhibition assay. The latter, which adds only $4 to the price of the HerpeSelect test, performed well in a study conducted over a decade ago. Rick Pesano, the medical director for infectious disease at Quest, believes that with more awareness, the test could stand in for the Western blot. But the test was not mentioned in the USPSTF guidelines because it still has not been evaluated in asymptomatic individuals, according to Cindy Feltner, associate director of the RTI-UNC Evidence-based Practice Center, who helped prepare the science review for USPSTF.

“We need better diagnostic testing. That is where we are stuck at this point,” said Johnston. “We don’t have a good test that’s inexpensive, high throughput, and reliable.”

Finding out the hard way

No good data exist on how often patients with questionable positive results are actually re-tested. Until the 2015 update, CDC herpes testing guidelines had no mention of confirmatory testing for low-positive results, said Johnston. So patients often discovered the option not through their doctors, but through searching the web and reading online herpes forums.

That was the experience of Bryan, a 40-year-old man who lives in Indiana, who wrongly believed he had herpes for about two months in 2011. The misunderstanding actually put him at higher risk, he said: During those months he considered joining the hundreds of thousands of Americans on dating sites for herpes-positive people. Exclusively dating people with herpes would have increased his likelihood of contracting the virus.

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The experience of YT, a 33-year-old mom who has suffered from frequent herpes symptoms over the last year, shows another side of the testing breakdown. She believes she was given HSV by a partner who didn’t realize herpes wasn’t included in his previous STD tests, she told STAT. Having herpes has caused her significant emotional trauma, and has driven her to permanently swear off dating. Had her partner known his true status, she wonders if her story would have been different.

These kinds of stories come out in anguished postings on internet forums and in dozens of confused calls to the UW lab each week, where research coordinator Matt Seymour says some desperate patients call over and over again, unable to get the answers they need from their doctors.

“People call and say, ‘I just don’t know what’s going on,’” he said. “We’ve almost become de facto counselors.”

Herpes
Transmission electron microscope scan of cytomegalovirus particles. CDC

In the absence of answers

Herpes tests aren’t the only ones with a risk of false positive results. False positives can occur for any test that diagnoses viral infection based on antibodies, i.e., your body’s immune reaction, rather than direct detection of the virus. For similar diagnostics like HIV and hepatitis C testing, protocols automatically call for a second test that directly detects the virus whenever an antibody test comes back positive, said Paul Swenson, laboratory director in the department of public health of King County, Washington. Herpes, however, is a particularly challenging infection to directly test for, because the virus spends most of its time hiding in nerves. Swab tests can sometimes detect the virus during outbreaks, but this isn’t an option for people without symptoms. Thus even the Western blot relies on antibodies, and may give indeterminate results to a small number of people.

But two steps of antibody testing are still more reliable than one step; today’s diagnostics for Lyme disease and syphilis are a two-step antibody testing approach, said Dr. Edward Hook, a medical epidemiologist specializing in STI screening and prevention at the University of Alabama, Birmingham, who questioned why such a standardized two-step approach hasn’t taken firm hold for herpes.

“Some research has shown that two-step testing … might improve the specificity — that is avoid false positive results for the blood test — which would be a great thing because these diagnoses create great anxiety and concern for people,” he said. In a commentary accompanying the USPSTF guidelines, Hook expressed disappointment that herpes testing had barely improved over the past decade.

“There is no perfect test but there are ways to reduce the inaccuracies and reduce the number of equivocal results and those are actively used in other diseases,” he said in an interview with STAT. “But they haven’t been used very aggressively for the purpose of herpes.”

In the absence of sure-fire test advances, education and a lessening stigma surrounding herpes might help, not only by reducing test-related confusion, but potentially by bringing discussion of the virus out into the mainstream, said Hook.

“There’s no major herpes advocacy group,” he said. “People call attention to diseases that they suffer from, but people with herpes don’t feel they can call attention to it. And that creates a lot of suffering.”

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  • Way back when I was 14, my mother got super paranoid one day and sent me to get tested for “EVERY STD OUT THERE.” And 2 weeks later I got a letter in the mail, as a virgin 14 year old girl, that I had contracted type 2 genital herpes. I had a complete breakdown, but out of shame- I couldn’t tell anyone what I was going through. Then the time came where I wanted to date, and telling my partner that I had genital herpes was the most humiliating thing I had ever done. From the time I was 14 to the time I was 20– for SIX YEARS, I had to tell anyone I started dating, that I was infected with an incurable sexually transmitted disease. My self esteem was in the trash, I was miserable, I was ashamed, and I was confused. For Six years, I beat myself up over a positive result and questioned what I had done wrong at least once a day. I went to get tested for “EVERY STD OUT THERE” every 4 months, since the time my mother made me go when I was still in middle school, out of utter fear and distrust for my own ability to be clean ever again. Every STD except HSV-2, because of course, I already knew I had that, and I knew it was for life. Even when I hadn’t had any sexual contact, when I had no symptoms at all, I would go and get tested– why not, when it took nothing to contract genital herpes?
    And then one time, six years after I learned I was infected with “genital herpes, a lifelong disease,” I went into a new clinic for my tri-yearly test. “A full panel- but not HSV-2. Everything else though, please.” The doctor looked at me funny. “Why not HSV-2?” And I was so utterly ashamed of my disease, that I couldn’t even tell a licensed medical professional about this thing that I felt made me disgusting. “I’m just… I don’t think I’m specifically at risk for contracting it.” To this she questioned why I felt I was at risk for contracting all types of hepatitis, only one type of herpes, syphilis, gonorrhea, chlamydia, HIV, HPV, and any other possible STI in existence, but was not under the impression I might need an HSV-2 test. So I just agreed, and shelled out the extra money for a test I knew would be positive. I didn’t want to answer the call when my results came in. I didn’t want to be reminded of the first time, when I was told again, that I have an incurable lifelong disease that would cause painful blisters in the genital area. But the call was quick. “You’re all clear, everything is negative.”
    I didn’t believe her. I waited for the paper copies. There was no HSV in my blood sample. No HSV-2. I got tested again. I got tested 6 times that year for HSV-2 because I didn’t believe it. But it wasn’t there.
    The positive result when I was 14 years old, ruined my life. It ruined it. I hated myself for six years. And nobody told me there was such a thing as a false-positive result. I am so worried for other people out there who might not know– who might never get another test.

  • I am trying to get clarification after having one of the most anxious ridden weeks. Let me begin by saying that I’m a newlywed and am having a hard time wrapping my head around what has transpired. my husband and I want to have a baby and have been trying for close to 2 years now. Prior to any sexual activity I made sure that I had a checkup including std/sti testing. We moved in together June 2016 and began planning for baby which included a new ob/gyn and another round of std/sti testing…all of which came back negative. This week I went in for results of new tests and found out that I am HSV2 +…which was shocking to say the least. When I left the Dr I began researching what exactly was going on with me and found that the testing is known for false positives and that there are things that can cause a false positive. This year I have had multiple bouts with sinitus a to the point I was borderline on the verge of bronchitis. My last bout was within weeks of my testing and I am trying to figure out if my antibiotic could have put me in a position to have a false positive. The antibiotic I was on was one I’ve never been on but I was told it was one of the strongest on the market. Medical history wise I do have a thyroid history bit it has been stable for several years. I’ve also been going through multiple rounds of weight loss meds and know that the more medication you use the more you compromise the immune system. I have also read that Drs don’t run the hs test without seeing a visual outbreak, so I’m wondering what caused her to run it at the same time. when I wemt in for my annual I also believe that I had and still may possibly have a staph infection based on what I’ve seen online. Could all of these things cause a false positive?

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  • I recently tested positive for herpes type 2 with a score of over 8. The above article says anything over 3.5 yields 90% accuracy. I had never had any signs or symptoms. After much haggling with my doctor, I managed to get them to sign off on a Western Blot test from the University of Washington. It came back negative. If you haven’t had any signs or symptoms yet tested positive, definitely get tested again with the Western Blot. There must be so many others just like me who have this cloud, unnecessarily hanging over their heads.

  • I’m currently pregnant and my Dr did a blood test and I came up pos for type 1 and type 2 but it was right on the borderline. Is there a way it can be false. Never had an outbreak or symptom. He wants to retest in a few weeks but I can’t wait that long!

  • I have been tested yearly for STDs every year since my ex husband, married for 9yrs, was cheating on me. All was negative. This year, almost to date we divorced, I had a positive result for herpes. I asked for a retest and now waiting on them to come in. Can that first test be wrong? I have NEVER had symptoms or an outbreak.

  • Four years ago, my blood tested positive for type 1 and my boyfriend’s blood tested positive for type 2. We’ve never had a symptom our entire lives, nor since the years we’ve been together. We were so horrified and depressed at first from the results, but then a doctor told us that the blood tests alone can’t be trusted. He said that the antibodies from childhood chicken pox could even trigger a false positive. Doctors should inform their patients about how unreliable these blood tests are.

  • I was given a swab test after having some swelling in my vaginal area and came back positive for herpes but prior to that my doctor did a drainage of that spot and went home and did a sitz bath the next day the swelling went down and the soreness and it wasn’t there anymore after 24 hours the only thing was there was just a little not or hard not there I’ve been told that doesn’t sound like herpes you don’t have herpes for one day and disappears the next day please help how can I possibly get tested to make sure that it is herpes or not herpes. Thank you seriously depressed

    • Very similar situation. I’ve researched and researched looking for clear step by step of tests name to take with most accurate results!

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