Herpes 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.

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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  • I was tested at local VA- the test was done by Quest Diagnostics. The results came back POSITIVE with Ref: Range : NEGATIVE. There were no ref range numbers. I took a second test about a month later HSV 1 and HSV 2 IGG AB same as the first test with the same results—however Quest performed a HSV and HSV2 DNA using same blood used for the IGG. The results were not detected and Ref. Range not detected———does anyone know what this means?

  • I was diagnosed with Hsv2 by swabbing 10 years ago. I have never had ANY symptoms and dont take medicine. My partner has always tested negative so a few months ago I took a blood test and everything came back negative. My doctor said the swab was most likely a false positive.

    • What made you get tested? I was sore below and got a positive swab but I don’t believe I have it and I never had a bump or blister

    • How can we be accurately diagnosed? Are there additional testing that was recommended to you? My blood test have been negative as well. I’m worried about neonatal transmission now that I’m pregnant.

  • The Quest Herpeselect test should really be pulled off the market. I have had the test several times with it coming back with numbers just barely over 1.0 being listed as positive. Following up with other tests, have always come back negative. Even knowing this process now, it is still devastating each and every time and as other comments have indicated, physicians are not very familiar about the false positives. I had to educate a previous physician about this issue and about the options for follow up testing. If you are in this situation, ask for a follow up test using a different method and also lookup the Western Blot test option for confirmation. Quest should be held accountable for continuing to use a test that has been shown to have these kinds of issues

  • How accurate is a swab? I was diagnosed 4-5 years ago by a swab. I was put on acyclovir, and I’ve taken it ever since. However, I’ve not had any more outbreaks since?

    • I just got my results back through a swab done on me and it came back positive, I am also on acyclovir. I am questioning the same, with my anxiety going crazy researching every single day if this is truly what I have. How accurate is a swab and what other tests can be done!!!!

  • I’m from USA am here to give my testimony about Robinson.buckler who helped me cure my HERPES (HSV), i want to inform the public how i was cured from (HERPES SIMPLEX VIRUS), i visited different hospital but they gave me list of drugs like Famvir, Zovirax, and Valtrex which is very expensive to treat the symptoms and never cured me. Three months ago a friend suggested that I try herbal medicine; from a very powerful herbal doctor called (Robinson.buckler (@ yahoo). com. I looked up his blog on the internet site and indeed he have had immense success with his product. There were lot of persons posting their testimony about how he cured them. when i contacted him he gave me hope and send a Herbal medicine to me that i took and it seriously worked for me, my HERPES result just came out negative. (Robinson.buckler (@ yahoo). com

  • I had my very first sore(one sore) in my genital area test positive for herpes 2. I’ve only had one partner for 17 years. His blood test came out negative. I can’t understand it, period. No doctors I’ve talked to have an answer.

    • This is all so confusing. I too tested positive for both, my husband of 24 years is negative. I have never had any sexual contact with anyone else. Have never had any flare ups or blisters. How is this possible? Doctors have no answers. Test numbers were low so could be a false positive. Will have to look into having another test. Have lived for a year feeling horrible trying to figure out how this could happen.

    • I had the same thing! I had one sore, swabbed positive, blood was negative. Doctor told me the infection was so recent, that it will not show up in blood for a few months. I was retested with blood 6 months later, now positive. My partner of 2 yrs is negative for both 1 and 2. It makes no sense. My dr is perplexed and wants me to see infectious disease specialist.

    • I am in a similar situation. I was told that I have herpes ll with a value of 2.18, but I have only had one sexual partner my whole life. He does not have herpes ll, but does have herpes l, which I was told I do not have. I’m so perplexed and I think about it so often, my doctor did not really show interest when i told her about the odd circumstances surrounding this. I feel discouraged.

    • I am currently in the EXACT same situation. I have never had any type of sore, blister, or lesion in my genital area or mouth. I have one sexual partner & he is negative. I went to the doctor for a hemorrhoid & the doctor did a swab & came back saying its herpes. HOW!? I’ve never been exposed so how can that be!? NOt only that, she was so relaxed & cavalier about it like its no big deal. I’m really perplexed, angry, frustrated & confused & I have no idea where to turn or what to do.

    • @Ashley

      (1) May i know which type of herpes you apparently have(i said “apparently” because there’s high likelihood or at least a 50% likelihood your result is a false positive(meaning false alarm)) ?? because there are 2 types of herpes: (1) HSV-1 (oral), (2) HSV-2 (genital).

      (2) Have you experience any outbreak/symptom?? if no, then this increases the likelihood of false positive result.

      (3) And what kind/method of test did your doctor used?? there’s the traditional “IgG & IgM” test(blood test) and the swab culture….if either of the methods are used to test for your STD(specifically herpes) then this continues to increase the likelihood of false positive result because *read question 4*

      (4) was the doctor a general practitioner or a specialist in STD ?? if your doctor is not a specialist in STDs or his specialty is in other field then it’s more likely n expected of him to use the “IgG & IgM” test or the swab culture…because if it’s a specialist doctor that deals with STDs or a doctor which has better knowledge of STD test compared to other general doctors which specialises in other area, then the specialist doctor will use the “polymerase chain reaction” (“PCR”) test…. doctors with better knowledge of STDs would use this PCR test method as it is far more accurate than the IgG/IgM and swab culture method because the specialist i visited said that the 2 aforementioned methods are obsolete and only carries 50% of accuracy….so it’s like there’s no point using a weighing scale machine to weigh your weight when the weighing scale machine only has 50% chance of being accurate…there’s a saying that goes “a partial truth is still a lie”

      Both HSV 1 & 2 are very common but HSV-1 is far more common than HSV-2….in 2017, World Health Organisation says half of the world’s population have HSV-1, while around 400million+ people have HSV-2 (source: https://www.who.int/news-room/fact-sheets/detail/herpes-simplex-virus)

      The point is HSV is actually and generally non-harmful(u won’t die from it n u can still have family n normal life), it’s basically a virus that just causes skin disease…just like the influenza flu virus, there’s no cure for the influenza virus(it stays in your body forever once u had it once) but may recur from time to time every once in a while….so now just imagine u have influenza virus, u suffer from the flu, u get treatment and after a while, the flu is gone….does that mean u’re totally cured of the flu ?? nope, it’s just gone for now after treatment, maybe in few months or even years or decades the influenza virus will manifest again n u have flu again in that future, therefore the same can be said with herpes(whether oral or genital) too…. bigger problem is the stereotype of the negative social stigma has on herpes.

      nevertheless, apart from the obvious sexual intercourse, herpes can still be transmitted through just kissing alone ….even mere skin to skin body contact…..this applies only if the infected area touches any other part of the body, that’s why even children or virgins can have it too…most people thought herpes only is received by having sex….partly true, but herpes is as common as the common flu, so it can be transmitted through normal daily lifes(not through coughing though), it’s mainly transmittable through skin to skin contact on the infected area(problem is nobody knows what an infected herpes area look like even , so they normally accidentally touch it without knowing n have it, but again, it’s fkking non-harmful! ffs, even children can survive it(but not newborn infants though, never ever kiss(best is restrain from touching at all) a newborn infant IF u have breakout of cold sore(cold sores happen on your mouth area)).

      ok, now about the PCR test, it’s only done by taking a blood sample of your symptom(or breakout/lesion or the suspected symptom…however u wanna call it)…so that’s why if u DON’T HAVE any breakouts or any symptoms, most specialist doctor won’t do the PCR test on u n they’ll confidently tell u to disregard your previous positive test result as it’s likely to be a false positive result…..but if u have breakouts/symptoms showing or feeling sore then only u have the right to worry for real and request for a PCR test(not IgG/IgM or swab), if u have no breakouts/symptom how is the doctor gonna take a direct sample of your symptom/sores ?? that’s why specialist highly recommend u not to worry as it’s just a false positive….but the moment if u have suspected breakouts or sores then visit the doctor immediately(the sooner the better) for confirmation n if the doctor think it’s a reasonable possibility that your sore/symptom could be herpes then he’ll most likely do the PCR test….

      all in all, from your description, i do not think u have herpes even though the internet says it’s asymptomatic(it’s just part of a tactic to bring u to awareness, i mean, look at u now, i’m sure u have done tons of reading about herpes n possibly even other types of STDs to educate yourself more n know more stuff n making u feel more precautious when it comes to sexual intimacy right?).

      of course that said, your reaction of being sad, depressed, frustrated etc are totally normal because when u first found the only impression u have about herpes is basically a type of disease that will ruin your life for the rest of your life….but when u educate yourself more about what exactly it is, how it is transmitted, how the test methods are used, etc etc then u will realise it’s actually not as bad as it sounds(hospitals n commercials make it sound terrible n deadly so that the public will not simply engage in promiscuous behaviour, that’s why the first impression by non-infected people are usually “ewww” like as if u’re a leper)….hell, if i ever meet a girl i like and if she admits to me she has herpes then i wouldn’t mind at all, i mean at first i would definitely reject such person but after educating myself thoroughly on herpes, i realise it’s actually non-harmful(but of course there are exceptional cases)….just like the influenza virus example i gave u, herpes is just like that…from your description of your story, yours sound totally mild and normal type of “herpes”(assuming if u even actually have it after a PCR test)….but sadly, the social stigma of herpes prevails and will never be changed, so that’s why most people actually feel sad, depressed and angry when they found out they have it.

      i’m not trying to comfort u, i’m merely telling u facts…it’s non-harmful, so do not worry.

      i got tested positive for herpes with IgG/IgM test, sure enough, i insisted for a PCR test then my results were negative…and my specialist doctor was like “i’ve told u so but u insisted”.

  • They tell me I have both but I’ve never had any kind of sores or blisters down there. I’ve had very dry lips that crack sometimes but again no blisters. I have Rhuematoid arthritis so my immunity stays very low…how would I go about getting this second test? I GOT to feel like there’s hope out there….

    • You guys n gals. Don’t give up. I have been doing research. Start yourselves with googling and utubing. I believe there is a way to rid this virus with holistic ways. I just had one blister just one recently with no outbreaks ever, my husband of 17 years and he’s my only one I’ve been with and his blood test came out negative. Now I am hearing that if the partners immune system is strong, that it’s a low risk for them to contract the disease, but not Impossible. Eat as clean as you can. Greens no sugar. Sugar feeds the little monsters

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