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.
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.”
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.”
I posted a few times last year on here but thought I would post again to hopefully help some people not stress out over a false positive diagnosis.
The only conclusive way to know if you really have HSV2 is to get the Western Blot test Done through University of Washington. Its the only lab in the US that does the test. I paid about 260$ for the lab tests and 100$ for refrigerated sample shipping but well worth it to confirm I had had a false positive with the cheaper test. I had a 35 for HSV1 so obviously I have that am most of the population does. I had a 0.7 for HSV2 which was confirmed to be a false positive.
Here’s the number to the lab at U of W.
800-713-5198 and the link:
Chris I actually have the kit I just have to find somewhere to have my blood drawn. Labcorp and Quest doesn’t do it. I don’t want to use my Gyn for anything anymore at this point. So I’m stuck kind of!
Love, Quest definitely won’t help you with drawing for the Western Blot since they own the patent to the cheaper, less accurate Hsv test. I would go to a primary care doctor that can refer you to a lab. Or maybe go to a planned parenthood since they do std testing already at some locations.
I had a positive HSV 2 and didn’t have ANY symptoms for 17 years. I was only with my husband for those 17 years and his test came back negative. There is so much Regular Drs don’t know or have an answer I do believe you can rid the virus but it takes determination of absolutely no sugar in your diet because the disease feeds off of sugar and bad foods you eat. Do research and don’t believe these people that say these Herbal Drs can heal you. You basically have to eat raw greens as much as you can no meat or dairy no preservatives and drink distilled water. Other remedy’s need to be included
I recently got tested and my test results came back positive for both hsv 1 & 2. I’ve never had any symptoms so this has came as a big surprise to me. It has also brought me a lot of anxiety. My counselor went over the results with me and said it falls in the range of it may being a false positive and that I should get tested again in 3 months. I don’t know how to deal with the not knowing for three months. I had to contact my last two sexual partners and they’ve told me they haven’t had any symptoms but they too will get tested to be sure. The not knowing part is really what’s affecting me at this moment. I have an appointment this week with an obgyn but I’ve done research and really there’s no way of actually being sure unless you get a breakout and they test it. Does anyone have any advice they could give me?
What we’re your range in number for both ? And what test did they use to test you with igg or igm ?
Igg blood test was used. Hsv 1 was 37.90 and hsv 2 says 2.96
What did your doctor tell you ?
Well I went to quest Diagnostics for testing and the counselor that went over the results with me basically told me that it falls in that range where it could be a false positive and that I should be tested again in three months. I made an apt with an obgyn tomorrow to try to get more information because I really don’t want to wait three months.
Yeah I wouldn’t wanna wait three months either I think I would be killing my self slowly just with the thoughts of those results for those entire three months . Yeah go see an obgyn they might tell you something different , let me know what they tell you .
Hi, I suspect recent exposure about 20 days back and took hsv test part of 10 panel std test and got “Negative Equivocal Positive” for Hsv 1 and Hsv 2 using IGG test. What are the chances of it turning into Positive?
Hello…I just had recent testing for HSV2 not sure why never had any symptoms or outbreaks. My results can back 2.15! I’m not sure what to do. I wanna have my husband tested whom I’ve been with forever. But I wanna make sure my results are legit. Any suggestions or advance…please!
You tested positive for it am I correct ?
@ Soveida flores yes I did test positive
What blood test did they us igg or igm?
What blood test did they use?
What test did they use ?
So how did you find out through pap or blood ?
What did your doctor say? I have heard anything below a 5. Could be a false positive
Wow really well what kind of doctor was that ? I would go get a second opinion if I were you !
Yes I agree there is no way they can find out for sure if you have it is unless you have a break out is the only way they will
Yes that is very true! Neither myself or my husband has ever had any type of outbreak or anything. As to why I was wondering why test me if there are no symptoms of hsv2. I sometimes think they do things to keep you coming back to them. I remember her response being well contact us if you have an outbreak or if you and your husband are battling about this you can set up an appointment with us and we can help you guys sort this out. WHAT! Never once did she say we need to retest you or anything of that natural. It’s hard to find good doctors out here that really care about their patients.
So how is this true? What medicine does he have, that nobody has heard of or tried?
This is 100% garbage and I hope you get caught with your bs… There is no “cure” for this, and the whole article is about how it’s difficult to even TEST for. You are a lousy person.
Hey I was tested on 18th December 2019 it all came negative
Got tested again on 30th of January HSV 1 came positive
Have anyone experienced this?
I mean specifically for hsv 1
Yes ! I did, I tested on 6 feb 2020 got hsv 1 igg 0.21 and hsv 2 igg 0.02 . then again i got tested on 18 feb 2020 got hsv 1 igg 2.54 and hsv 2 igg 1.20. doctor clearly said its false positive. and i dont have symptoms too. have to get retested but still scared to do !!!
Are you sure this is true ?
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