The Truth about False Positive Herpes Test Results
Over the years, many people with no history of herpes symptoms have called me to begin counseling or group therapy after receiving a herpes diagnosis from a blood test screening alone. It is true that you can have herpes and not be aware of symptoms. However, if someone tells me they have never recognized any symptoms, I think it’s worth exploring a little further to make sure the diagnosis is accurate.
Over the years, many people with no history of herpes symptoms have called me to begin counseling or group therapy after receiving a herpes diagnosis from a blood test screening alone. It is true that you can have herpes and not be aware of symptoms. However, if someone tells me they have never recognized any symptoms, I think it’s worth exploring a little further to make sure the diagnosis is accurate. I suggest that they obtain a copy of their results and look at whether they had an IgG or IgM based test (the CDC says IgM based tests should not be used to diagnose herpes). Once they confirm that it was an IgG based test, I ask them to look for the index value of their result. About 50% of people who test positive for HSV-2 on an IgG based test with an index value between 1.1 and 3.5 do not have herpes (the lower the value, the higher chance of a false positive, the higher the value the more likely it’s an accurate result). The CDC recommends that anyone who tests positive on an IgG based test with an index value that falls between a 1.1 and 3.0 should get confirmatory testing (experts say the Western Blot is the best confirmatory test). Research shows that there can even be false positives above this range in some people.
(**A positive swab test of a lesion in someone with symptoms can be a confirmation. Blood tests are helpful when a swab test can’t be obtained or to help sort out other matters.)
Getting Help with Confirmatory Testing
I've found that an important part of mental health for patients with herpes is to feel a sense of understanding and agency around their diagnosis and test results and to learn information that can help them make a decision about whether they want to pursue confirmatory testing or not. I often refer patients with low positive results to consult with a medical expert if they have additional questions. The healthcare provider I trust the most with these types of questions is Terri Warren, NP, who has been an excellent resource for many of my patients. There may be other healthcare providers who can navigate appropriate confirmatory testing, but many providers have not learned how to do this. If you are questioning your diagnosis and want to learn more about confirmatory testing, you can do so here. If you need help coping with the diagnosis or with awaiting results, therapy or a support group can often help.
Low Positive Result with Symptoms
On rare occasion, I have seen people with symptoms that are assumed to be herpes, even recurring symptoms, who have not obtained a positive culture and who have a negative or low positive result on the IgG, even after an adequate amount of time has passed to have a higher value. Other conditions can cause rashes on genitals, such as eczema and even Lyme disease (yes, I have actually seen this happen). While a case like this can certainly be a true positive for herpes, if something is just not adding up in your mind, it may make sense to explore it further with your healthcare provider or perhaps seek confirmatory testing (either via a swab or Western Blot for instance).
A Little Something About HSV-1
HSV-1 can also have low index values that are false positive. If there is no history of symptoms and it is a true positive, it is impossible to know if an HSV-1 infection is oral or genital (unless the individual has never had contact that could expose the genital area). More than 50% of adults in the U.S. will test positive for HSV-1.
Take that number in…
Most HSV-1 infections are oral and plenty of people don’t recall ever having a cold sore or symptoms that would explain their HSV-1 diagnosis. That said, there are also many people who contract it genitally, often from someone who has the infection orally and performs oral sex (with or without active symptoms).
Coping with Results
Finding out your result is not a false positive or simply having to wait for confirmation of a result can be really difficult. If your result is a true positive, please know that you are not alone! I know this is not something you probably ever thought you would have to deal with. It can take time to adjust, but you absolutely can still date, have sex, have relationships, and feel good about yourself again. You may not be able to imagine it right now, but it’s true.
I offer individual therapy for men and women and group therapy for women in NYC who are diagnosed with herpes. It can be a relief to have space to talk about how you are feeling and how you will move forward with someone like me who is knowledgeable about herpes and familiar with the questions and worries people newly diagnosed with herpes often have.
I have been working with men and women with herpes for over 20 years and have watched many, many people get through this and go on to enjoy dating, sex, and relationships again. If you would like the support of therapy, I would love to help!
More Posts About Herpes
I hope the resources in this blog can further assist you. Read other posts about herpes here.
In-Person Counseling in New York
If you are in New York and would like in-person counseling or to participate in my therapy group for women diagnosed with herpes, please reach out. I’m happy to speak with you about whether counseling or the group would be a good fit.
**This information is not intended to replace medical advice or psychotherapy and is not intended to address all the caveats of a diagnosis. I am not a medical provider and simply provide this information as a resource for learning.
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About Melissa King
I am a licensed mental health counselor in New York City with a psychotherapy office in the neighborhood of Murray Hill in Manhattan. Find out more about me here. I'd love to hear from you. Contact me if there's a topic you'd like to read about here.
**Information on this site is not intended to replace medical advice and does not constitute a psychotherapeutic relationship with the reader.
You Were Just Diagnosed with Genital Herpes: Now What?
Maybe it’s hard to believe right now, but it’s going to be ok. I have been working with people diagnosed with genital herpes for a lot of years, so I am not saying this from some naive belief. It comes from my experience with my patients. Life really can go on after a herpes diagnosis. Many of my clients say that herpes actually forced them to deal with issues that were present before their diagnosis, such as with self-esteem or how they engaged with relationships, and that they ended up better than they were before their diagnosis.
So here’s what I suggest:
Maybe it’s hard to believe right now, but it’s going to be ok. I have been working with people diagnosed with genital herpes for a lot of years, so I am not saying this from some naive belief. It comes from my experience with my patients. Life really can go on after a herpes diagnosis. Many of my clients say that herpes actually forced them to deal with issues that were present before their diagnosis, such as with self-esteem or how they engaged with relationships, and that they ended up better than they were before their diagnosis.
So here’s what I suggest:
1. Breathe.
It’s probably going to take a second for you to wrap your mind around this. That’s ok. In the meantime, I want you to know a few things.
The difficulty with herpes is mostly the mental health impact, leading to feelings of shame, loneliness, and sadness related to social stigma. That’s real. And it sucks. There are no overnight answers, but there is something you can do about these things.
Realize that from a medical perspective, for most people, herpes is minor. I know you might not care since the stigma makes things feel so painful, but I want to at least put your mind at rest about the medical piece. Medical complications from herpes are uncommon.
Unless you are very current with STI education, much of what you think about herpes probably isn’t true. That’s what stigma does. It leads to a lot of myths and misperceptions. A good place to go for readable and up-to-date facts is the Updated Herpes Handbook by Terri Warren who is a medical expert in the field.
There is usually a period of adjustment but most people I’ve worked with eventually move on with their lives. They date, they have sex, they have relationships, and they have families. Fortunately, you are not a pioneer. Many people have gone before you and figured this out. In the last 10 years, more people (writers, comedians, healthcare providers, etc.) have come out publicly about their diagnosis. I know it might be hard to believe right now, but most of my clients go on to have partners who are negative (to their knowledge)—meaning, lots of potential partners are accepting of this diagnosis.
Stigma often leaves you feeling that others will believe you made bad choices and will question your worth. The truth is, herpes is common. Most people have some risk. In addition, most people who have herpes don’t know they have it. So it’s actually not that uncommon for it to be transmitted in ways people don’t suspect, such as in monogamous relationships, between two people who know each other well, and even between people who have asked to see each other’s STI test results (doctor’s don’t usually test for it unless you have symptoms). I won’t pretend that people’s ideas aren’t shaped by stigma but people’s ideas are also influenced by hearing the experience of a real person sitting across from them. There are no guarantees that you won’t experience rejection after telling someone about your diagnosis, but I can tell you that many more people out there are understanding and supportive.
2. Don’t Google.
I discourage googling because there is so much outdated and poorly written information about herpes on the web. If you’d like to read more, go to the list on My Favorite Herpes Resources. I strongly discourage visiting online forums, with the exception of Terri Warren’s medical forum because she is the only one who responds and she does so with facts.
3. Do Things That Make You Feel Like You
You may feel a bit “out of body” right now. And initially it might be hard to feel like yourself while doing things you usually like to do. But try to keep doing those things with some regularity. Herpes did not make you into someone different than you were yesterday. It’s important to stay connected with your true self.
4. Support Groups
If you need to talk with someone who gets it, there are many support groups out there. Many are online since COVID and can be attended from anywhere.
If you’re in New York City, I have an in person therapy group for women diagnosed with herpes.
Here are some online support groups some of my clients have recommended.
If you feel comfortable, friends and family can also be helpful. Many of my clients have found a lot of comfort from telling a friend(s) or family member(s).
5. Get A Copy of Your Results
When you’re ready, get a copy of your results. No need to rush. That said, when you are ready, I think it’s always empowering to have your own copy of your test results and to learn to read them. An important resource I recommend where you can learn more about how to understand your results is The Updated Herpes Handbook by Terri Warren, NP.
6. Counseling Can Offer Relief
If you need someone to talk to, counseling can offer relief. I would love to help. If you are in New York City, I offer in person therapy for individuals who have been diagnosed with herpes or who are worried about having herpes but don’t have a diagnosis yet. I also offer virtual counseling to individuals in California, Florida, and Upstate New York.
Keep Moving Forward
No matter what you do, keep moving forward. Life throws us curve balls that can knock us down for a bit, but you can find your way from this. Many people have. I have heard hundreds of stories, and that is only a small sample of those out there who have emerged out of this!
I hope something from this guide helps you on your way.
Get Updates about New Blog Posts
If you find these posts helpful, sign-up to receive notices of new posts here. I will never sell your information. You can unsubscribe at any time. View my privacy policy here.
About Melissa King
I am a licensed mental health counselor in New York City with a psychotherapy office in the neighborhood of Murray Hill in Manhattan. Find out more about me here. I'd love to hear from you. Email me if there's a topic you'd like to read about here.
**Information on this site is not intended to replace medical advice and does not constitute a psychotherapeutic relationship with the reader.