optimist

@dlacinda I have HSV2 and mostly meet people through Tinder. I disclose when it becomes obvious through conversation and chemistry that things may move in a sexual direction. I usually incorporate it into a larger conversation about safe sex expectations. Most people have been fine with it. A couple people disclosed right back to me which was nice.

This is either a case of him being vigilant about testing himself and partners for HSV, him being unaware that 93% of people your age have HSV (source: http://projectaccept.org/who-gets-hsv/), or him having a hard time with known risk vs. unknown risk. In my experience, difficulty putting known risk in perspective is usually the culprit when people have anxiety about this. FWIW, I have HSV2 and have found most prospective partners to be accepting. I know it sucks when you like a particular guy, but I would just see this as a basic incompatibility issue and move on swiftly so you will open to meeting others who are fine with your HSV status.

I've seen Terri Warren (a clinician who specializes in herpes) address a similar situation in her Q&A forum. A woman with HSV2 disclosed after already engaging in oral sex, including receiving oral sex. The woman disclosed prior to intercourse and her partner reacted very strongly and negatively. Terri's opinion was that transmission was theoretically possible in that way, though she had never encountered it in her practice over the course of 33 years. She advised that disclosure prior to oral sex should not really be necessary from a risk perspective but that disclosing prior to oral sex can be beneficial in helping avoid these emotionally charged situations later. She also advised not partnering with people who react in this very strong and negative way.

@PrettyLady That was not my takeaway from those articles, but we all have to do what is most comfortable for ourselves. It generally takes a few months for antibodies to build to a sufficient level to prevent autoinoculation. There are rare exceptions, particularly in people who have highly compromised immune systems.

None of the medical professionals I've spoken with (PCP, gynecologist, nurse practitioner) have had an awareness of asymptomatic shedding being a potential factor in transmission. I think it used to be that doctors advised people HSV could only be spread when there's an active outbreak, and some doctors still advise this, though research indicates otherwise, whether it's HSV1, HSV2, oral or genital. Average shedding rates do differ depending on type and location. Genital HSV2 typically sheds most frequently with oral HSV1 close behind. Then genital HSV1 (about 1/3 as often as genital HSV2), then oral HSV2 (hardly ever sheds). If you have genital HSV2 and take daily antivirals, your shedding rates would like be comparable to someone who has genital HSV1. IIRC, on average, daily antivirals cut shedding rates by 70-80% and lower risk of transmission by 50%. Terri Warren (who you quoted in your link) has also stated that people infected with HSV2 are highly unlikely to contract HSV1. The opposite is not true (having HSV1 does not provide protection against contracting HSV1), but she has also pointed out that someone with an existing HSV1 infection is less likely to have noticeable symptoms upon contracting HSV2. 80-90% of people don't notice when they contract HSV2 and she believes this is partially due to many of these people already having HSV1. I have a more recent quote from Terri Warren on the topic of oral sex and HSV2 which I will PM (private message) you. It's a link to a Q&A with someone so I don't feel right positing it in a forum but will PM. As for your specific questions, #1 is incorrect in that it ignores the reality of asymptomatic shedding. However, if you've had HSV2 more than a few months now, that supposedly provides a significant degree of protection against HSV1. #2 - Spreading the virus to other parts of the body is rare once someone has been infected long enough to build sufficient antibodies. And yes, there is ongoing research on HSV. For instance, there is a lack of sufficient research on genital HSV1 transmission and same sex couples in particular. There is more existing research on HSV2 rates and transmission among heterosexual couples.

Glad to hear you've been having successful disclosures. This is how it has been for me most of the time, though not always. When it's not like this for me, I try to remember that usually this is how it goes. Regarding fear of sex and choosing to decline sex, of course you should wait until you are ready, but I'll share something that helped me overcome this mindset at the beginning when I was still processing everything. Like you, I'm a very sexual person and I've had a full sex life. Until I tested positive for HSV2, I didn't understand how prevalent HSV is, how most people who have it don't know it, how lots of genital herpes cases are caused by oral sex, and how condoms offer incomplete protection during intercourse. Knowing all this now, and realizing that roughly 80% of partners during my lifetime had the potential to transmit HSV to my genitals through either oral sex or intercourse, I ask myself if I would've wanted those 80% of partners to opt out or shield me from their HSV, had they known they were infected. Would I have declined to become intimate with them or used dental dams when receiving oral sex? The answer is no. I would've wanted the option to manage my own risk. In fact, I did once have someone disclose to me and I was okay with it. So I give my prospective partners the same courtesy of managing their own risk. I inform them of my status, offer to answer any questions they have (and have educated myself well enough to answer those questions), and take daily antivirals to reduce risk of transmission. Beyond that, I allow them to manage their own risk.

I'm so sorry you experienced this. I can share my own experience which is that most prospective partners have been accepting in response to disclosure. That doesn't mean I don't feel discouraged when someone is not; I do. But I try to remember that more people are accepting than not. I remember that Terri Warren has observed the same in her decades of practice specializing in herpes. And I have seen multiple informal studies that indicate this is the case. Those same studies indicate there may be a correlation between actual outcomes and expected outcomes, so getting yourself in the right frame of mind may be helpful in that regard. That is not to say we can control how others think, of course. FWIW, I have multiple friends who have been open with me about having HSV and I've seen them fall in love, marry, have kids, etc. Also, having dated people who truly don't care about my HSV status, I know that's what I need. I would not be comfortable or satisfied in an intimate relationship with someone who was not comfortable with my HSV status, and I assume that would not be good for them either. If I disclose to someone and they express they are conflicted due to anxiety over HSV or that it is a deal breaker for them, I assume an intimate relationship would not be satisfying for either of us. I consider it a basic sexual incompatibility issue if my partner and I can't feel sexy and uninhibited with each other.

@mloops As @hikinggirl mentioned, if it was an IgM test, it would be unreliable for these purposes. I will go farther and say that a negative IgM and positive swab is more likely to indicate an OLD infection, not a new one, while the reverse would be true for a negative IgG. But even the IgG misses 5% of HSV2 infections (after 12 weeks from time of infection) and the same people tend to test false negative each time for reasons unknown. The Western Blot is a more sensitive option for people who have lingering concerns after a low positive result, but that's not relevant to you because you've had a positive swab which is considered definitive. I would absolutely not beat yourself up about testing. It is not a standard test and many people believe they are tested for "everything" when asking to be testing for everything. Additionally, many doctors discourage testing in the absence of symptoms. My experience with medical professionals has been as follows: - Gynecologist allowed me to test for HSV with my full STI panel but when the results came back positive for HSV2, he and the nurse practitioner essentially advised me to ignore it because I have no symptoms. NP went even further to insist I did not actually have it and had only been "exposed." Both discouraged antivirals. I did my own research and went back and requested antivirals and the doctor agreed it was fine. - Primary Care Doctor with whom I shared my results at my next routine physical said the results are unreliable and I shouldn't have tested because the tests are unreliable. I explained why I thought the results were accurate (antibodies beyond a certain threshold) and he said fine, go ahead and take the antivirals if you want, they won't harm you. I share all this to emphasize to you that I don't feel you were somehow negligent in not asking to be tested specifically for HSV. Or not knowing to ask. Your experience is very common. I think a minority of people are aware that they need to specifically ask for HSV testing if that's important to them. As I mentioned earlier, only 12.5% of people with HSV2 have been tested/diagnosed, and I would assume most of them were tested as a result of having an obvious primary outbreak or recurrences, given standard testing practices and the CDC's recommendation. I think maybe there are pockets of people who do test for HSV more regularly, but I believe your own experience is much more common.

@mloops Again, you want to bear in mind that 80% of adults have at least one form of HSV that can be transmitted to an uninfected partner's genitals through various forms of sex. Opting out of being with her is not protecting her from HSV in general, it is only protecting her from your HSV specifically, which may or may not be important to her. It *is* a deal breaker for some people, yes. However, my experience has been that most people are accepting. The one time I was disclosed to, decades prior to my own diagnosis, I was accepting. Of the many times I've disclosed to others, about 3/4 were fine with it. I would not frame this as a result of bad decision making. HSV is very common, most who have it don't know it, and it can be transmitted when condoms are used (though condoms do help minimize risk). Some people do prioritize remaining HSV-free. Doing so means testing for HSV with all new partners after abstaining for at least 12 weeks, then being willing to pass on all partners who test positive which is most partners. That's a tall order. I respect those who make that choice, but I wouldn't say those who don't have made bad decisions. Just my opinion.

Hi, Buttercup! First, it's good to be aware that false positives can occur within a certain range (.90 and 3.5) on IgG tests, so if you haven't seen your results in that detail, you may want to request a copy to be sure the antibody level exceeds 3.5 and doesn't fall in the range of a potential false positive. Next, it might help to know that you are actually in the majority in that, according to the CDC, "Most individuals infected with HSV are asymptomatic or have very mild symptoms that go unnoticed or are mistaken for another skin condition." (Source: https://www.cdc.gov/std/herpes/stdfact-herpes-detailed.htm) For HSV2 specifically, only 12.5% of those with HSV2 are aware they are infected. 80-90% of people don't notice when they become infected with HSV2 for the reasons stated above (asymptomatic or very mild symptoms mistaken for something else). Finally, it might help to know how very common HSV2 is, especially among women, and rates continue to increase with age. Here are a couple graphs that illustrate this: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3020161/figure/F1/ (The red and purple lines indicate those who tested positive for HSV2; the green and yellow lines indicate those who were aware they were infected with HSV2. You can see here how common your experience is of having HSV2 and being unaware before testing.) I also discovered my positive status through testing rather than symptoms and I understand what you're saying about the sort of denial aspect. Given the stigma, it can feel like the knowing is the real problem rather than the virus itself. You're welcome to PM me if you'd like to chat.

@mloops Yeah, the CDC does not recommend screening for herpes at a general population level. 80% of adults have at least one type of HSV, most tolerate it fine, and the stigma is problematic. HSV2 is not as common as HSV1 but autopsies indicate 40% of people (in the U.S.) contract it over the course of a lifetime, so still quite common. This is not to say it isn't a significant problem for some people. It can be. But for most people, the stigma is more troublesome than the physical aspect. From what I can tell, doctors tend to focus on treating those with symptoms (cold sores or genital sores) rather than screening those who aren't bothered by symptoms but might otherwise be bothered by stigma. There is minimal effort to reduce transmission, the greater focus is on treating symptoms in the minority who experience significant primary outbreaks or frequently recurring outbreaks. The CDC provides a more complete explanation here: https://www.cdc.gov/std/herpes/screening.htm

@mloops It's possible one of you tested falsely negative by IgG blood test since there is a 5% false negative rate. Also possible one or both of you had an IgM test instead of an IgG test which would not be reliable. As for your previous partners, HSV2 is very common, especially among women. For every woman who has been diagnosed with HSV2, there are 7 women who have it and don't know it because they don't have symptoms or their symptoms are mild and/or infrequent enough to be mistaken for something else. 80-90% of people don't notice upon becoming infected with HSV2.

Was the culture positive for HSV1 or HSV2? And was it an IgG blood test? The IgG recognizes 70% of HSV1 infections and 95% of HSV2 infections, assuming 12 weeks have passed from time of infection . This means the IgG misses 30% of HSV1 infections and 5% of HSV2 infections. If you've had HSV2 throughout the relationship and did not have symptoms until now, studies indicate the odds of transmitting it to her (during the time you did not have symptoms) would have been 10% annually, assuming intercourse a couple times per week. If genital HSV1, then the annual transmission risk (outside of outbreaks) is likely closer to 3%, though this is just speculation based on typical shedding rates which are 3x more frequent for HSV2 than HSV1. Studies on genital HSV1 transmission rates are underway but current data is specific to HSV2. Transmission risk is higher during outbreaks, however.

12 weeks following infection, IgG tests will recognize 70% of HSV1 infections and 95% of HSV2 infections. If antivirals have been taken during that time, it can take longer for antibodies to build, but I don't know how much longer. You may want to ask Terri Warren or search her Westover Heights online Q&A forum as I'd guess this question has been asked before. Here's what the CDC has to say about IgM testing: "IgM testing for HSV-1 or HSV-2 is not useful, because IgM tests are not type-specific and might be positive during recurrent genital or oral episodes of herpes." https://www.cdc.gov/std/herpes/stdfact-herpes-detailed.htm

Yes, never recognizing an HSV2 infection is the most common scenario for people with HSV2. Autopsies in the U.S. suggest 40% of people contract HSV2 during a lifetime but only 5% of those people had recognized infections during life. http://jamanetwork.com/journals/jamaneurology/fullarticle/795486 Data from the U.S. National Health and Nutrition Examination Survey (NHANES) shows how HSV2 infection rates climb with age (to anywhere from 15% to 79% depending on race/gender/marital status, up to age 49, the upper age limit in the study) yet recognized infections remain in a range of around 3-8%. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3020161/figure/F1/ The CDC states that "most individuals infected with HSV are asymptomatic or have very mild symptoms that go unnoticed or are mistaken for another skin condition." https://www.cdc.gov/std/herpes/stdfact-herpes-detailed.htm Terri Warren, a clinician who specializes in herpes, has stated in the Herpes Handbook that 80-90% of people do not experience recognizable primary outbreak symptoms upon contracting HSV2. She also mentions cases of people who have a noticeable outbreak decades after contracting HSV2 (see bottom of page 5). https://www.westoverheights.com/herpes/the-updated-herpes-handbook/ I discovered I was HSV2+ through blood testing. It's very likely I'd had it for decades by then because my previous relationship was 16 years long, though it's possible I contracted it at some point during that relationship. There was a time when I had what I believed to be frequent yeast infections and that could have been an HSV symptom I missed.

@Tif1212 I'm so sorry you experienced this. I suppose the silver lining is that you found out fairly early that this is someone who won't respect your boundaries. It's unlikely this is only the case with sex. I tested positive for HSV2 and my experience disclosing has been that maybe 75-80% of prospective partners have been okay with it. Of those who were anxious about the risk, most had never been tested themselves and only assumed they and other partners were negative. I mention this to point out that often the reaction is about anxiety, not reality. Unless the person is getting tested and asking new partners to test for HSV, if they are sexually active, they are likely taking this risk regularly (for instance, as I've stated many times in this forum, half of women in my demographic have HSV2 but most don't know it). So when I encounter someone who has anxiety about it, I try not to take it personally. I know that anxiety is not always logical. For instance, I have no anxiety driving but I do have anxiety flying, and knowing the facts about relative risk does not change that. It also helps me to remember that most people are accepting, though I will admit I can get discouraged at times. And it helps me to see it as a basic incompatibility issue that would get in the way of both of us really enjoying sex with each other. Who needs that? It's way hotter for me (and of course the other person) if we can both put the risk in perspective. I want to be clear that I'm not referring to people who actively take steps to avoid contracting HSV. I mean those who get tested and ask partners to test. That's a very different situation and I respect their choice and efforts to minimize risk. I'm referring to people who are taking this risk regularly and only react with anxiety when someone discloses to them. In my opinion, that's about stigma and anxiety. It's super unfortunate, but again, I have found most people are okay with it, so I try to focus on that. When I get discouraged, I take a break until I'm ready to try again. I'm concerned about what you said about sometimes not wanting to continue with life. Please feel free to PM me if you need an ear. (((HUGS)))

@Aries - I'm sorry you're going through this. I do think it could be worthwhile to speak with your guy with an open mind, assuming you were previously interested in continuing with him. Only 12% of people who have HSV2 have actually been diagnosed. The CDC and numerous herpes experts state that 80-90% of those with HSV2 are either asymptomatic or have symptoms so mild they go unnoticed or mistaken for a minor skin irritation, yet they are capable of transmitting HSV2 to partners. The odds are more likely your guy doesn't know he has it, though of course I don't know that for sure. I contracted HSV2 sometime between the ages of 15 and 46 and didn't notice. At 47, I got tested for HSV1 and HSV2 (and other STIs) and the results came back positive for HSV2. I'd never had any incidents of partners having concerning symptoms after having sex with me (or at least nobody mentioned it, including a partner I had for 16 years), I didn't have a noticeable primary outbreak myself, and as you've probably learned by now, HSV is not typically included in standard STI testing. So I was among the majority of people with HSV2 for years or maybe even decades before learning I was HSV2+.

I hope you won't allow HSV2 to dictate your relationship choices. HSV2 is very common, especially among women. Most men I've disclosed to have been very accepting and those who were not interested were not rude about it. Also, if you feel trapped with your man, I think it would be kinder to *both* of you to let him go. Also, please know that having HSV2 doesn't mean you can't ever have unprotected sex with a partner who does not have HSV2. That is a decision you can make with such a partner, weighing the benefits and risks. Most (not all) couples in which only one person has HSV2 eventually stop using condoms. With or without condoms, there is risk of transmission. Condoms do not eliminate risk entirely. So it would be up to the two partners to decide whether or not going without condoms would be worth an increase in risk from 1% per year to 2% per year (if you take antivirals) or from 2% per year to 4% per year if you do not take antivirals.

My understanding is that an IgG value of 1.00 is more likely to be a false positive than a true positive *unless* it is a very, very recently acquired infection with initial antibodies still building as a reaction to a very recent infection. I don't understand why the tests themselves don't place values between .90 and 3.5 as "potentially positive" rather than "positive." It is known that false positives can occur in that range. The closer to .90, the likelier it is a false positive. The closer to 3.5, the likelier it is a true positive. I hope you'll find this is a false positive. Glad you're following up with your doctor.

I think it may be easier when you are not having symptoms. Time will probably help, as well. The scenario you described is not uncommon. HSV2 is very common and usually not included in STI panels, even when someone asks to be tested for "everything." 80-90% of people who contract it never realize it and only 12.5% of those who contract it are ever diagnosed. The rest have no idea they have it and are generally discouraged from testing for it or at least not encouraged to do so. There is no medical effort to identify carriers of HSV2 at a general population level, only to diagnose and treat those 10-20% of people with HSV2 who experience noticeable primary outbreaks and/or very obvious recurrences. The CDC recommends against testing in the absence of symptoms. What you described in terms of symptom progression sounds normal for someone who experienced a noticeable primary outbreak. Only 10-20% of people who contract HSV2 have a noticeable primary outbreak, but among those people, the significant symptoms you described do not sound unusual. And the difference you have noticed in terms of recurrence symptoms being less severe and lacking flu-like symptoms also sounds normal for those who get recurrences. If you find you continue to get recurrences and they are bothersome, you may want to explore antiviral medications which are very effective for most people who have recurrences. IIRC, daily antivirals reduce symptoms an average of 80% and many who take them have no outbreaks at all. Some people prefer to take them only episodically when they feel signs of an outbreak in order to speed healing. Some people don't take them at all. As for what to expect, individual outcomes can't be predicted in that way, but *most* people who have symptoms get them most frequently for the first year or so and then find their outbreaks decrease in frequency.

This is my understanding as someone who has casually researched this topic: If your partner performs oral on you, there is a very small (non-zero) risk of contracting HSV2 orally. It does happen, but it's very uncommon, which is why overall oral HSV2 rates are very low. The vast majority of oral herpes cases are caused by HSV1. When it does happen that someone is infected orally with HSV2, initial symptoms, if they appear, are visually indistinguishable from those caused by contracting oral HSV1. However, that is typically the only outbreak that will occur and shedding rates are minimal (average 1% per year vs. much higher rates for oral HSV1). Additionally, once antibodies are established, a person with oral HSV2 is no longer vulnerable to contracting HSV2 genitally (and they would also then be greatly protected from HSV1, as well). Of all the type/location combinations of HSV, oral HSV2 is least likely to shed virus and exhibit symptoms. As for performing oral, if you have a genital infection and do not have an oral infection, there is no risk of transmitting virus from your mouth.

@ash2018 None of the doctors I've encountered so far has been well informed about transmission. There is no effort to reduce transmission in the U.S., only to manage symptoms for the minority with symptoms, so perhaps that's why their knowledge of both transmission and less obvious symptoms (that do not medically require diagnosis and treatment) is limited. IME, they do not even think of antivirals as a tool to reduce transmission, just to treat symptoms of primary outbreak or frequent recurrences in those who get them, though it is possible to get a prescription strictly to reduce transmission if you are sufficiently proactive about requesting it. Also, all of the medical professionals I've spoken with have had the attitude that most people have HSV (whether oral or genital or unknown location) and it is generally no big deal, tests results are not reliable, etc. In a way, I appreciate that they are remaining medically objective in treating genital herpes exactly as they treat cold sores, rather than advising people to treat one differently than the other based on stigma. OTOH, their perspective does not reflect the reality of societal views and expectations regarding genital herpes.

I see. Yes, if both the swab and IgG were positive for HSV1, sounds like you'd been infected for some time before your first noticeable outbreak. I had wondered if perhaps you'd contracted HSV2 on top of an existing HSV1 infection. That's why I asked if you'd had a swab test that identified the infection as genital HSV1. Edit to add: I know somebody who went to the doctor with what the doc thought was likely a genital herpes infection. He had classic primary outbreak symptoms. Doc said they did not do swabs and gave him a lab slip for IgG testing. IgG test came back negative and the doc said it was a false alarm, he was not infected. Of course it's possible the guy did not have herpes and it was a false alarm, but if it was a primary outbreak, it would not have registered on the IgG test because it would have been too early. I wonder how often this kind of thing happens.

@ash2018 Did you have a swab test that identified that outbreak as HSV1? Or only the IgG?

It is most contagious within the first several months of contracting the virus. Then there's a second drop off after two years. This relates to asymptomatic shedding. Having symptoms vs. not having symptoms makes a difference in overall shedding rates because additional shedding is occurring right before and after outbreaks. Average annual shedding rates between symptomatic and asymptomatic people differ for this reason, the average for genital HSV2 being roughly 20% and 10% respectively. IIRC, the full difference between the 20% and 10% is believed to be due to the additional shedding occurring on either side of outbreaks. I don't recall the shedding rate the first few months but it is significantly higher than 20%. Even with GHSV1 which generally sheds less frequently than HSV2, the shedding rate is very high the first few or several months. Please note, this is all based on research I read a while back, maybe a year ago. I'm not a medical professional but do recall delving into this topic a while back from the perspective of a carrier.