optimist

@HikingGirl And I want to be like you! Yay! xox

@Homewardxxbound I've only read Terri's book. Everything else I've read has been on the Internet. Mostly studies, but also blogs like Ella Dawson's (https://ellacydawson.wordpress.com/herpes/).

@HikingGirl If you're going to take that route, how about something like "You know, roughly 80% of adults have herpes and some of them may be sensitive to these types of dehumanizing jokes, so you may want to keep that in mind in the future."

@Homewardxxbound I'm sorry to hear that. It is very likely a fair number of those women are infected, considering more women than men are infected. Those who are most judgmental about it may have the hardest time coming to terms with it if they should ever become infected or discover they have long been infected.

Depending on how open I'm feeling in the moment, and whether my openness in that moment would violate the privacy of others in my presence at the time (like a dating partner, for instance), I might make a corrective comment on the content of the joke if it was based on a common misperception, or I might call out a shaming aspect of a joke, but then I might follow up with a joke that I can see the humor in instead. My favorite: "Almost everyone has herpes" is both true *and* what someone tells you right before they give you herpes. At least that kind of joke acknowledges how very common herpes is.

There's info to be found on the web about herpes esophagitis, but it typically speaks to herpes esophagitis infections caused by HSV1 since that is much more common than infections caused by HSV2. The good news is that oral HSV2 infections are typically much less symptomatic (usually limited to just the initial outbreak) than oral HSV1 infections and also shed much less (1% per year vs. 6-33% per year for oral HSV1). You will be more infectious when symptoms are present and while antibodies are building over the first few or several months. If your partner has been infected more than a few months, you don't need to be concerned about spreading it to other parts of them, but you will want to take care in not spreading it to other parts of yourself. Autoinoculation is uncommon but can happen while antibodies are still building. Once you have sufficient antibodies, yes, you will be largely protected from contracting HSV2 genitally.

@JoanM If she has merely had a visual diagnosis, that is not enough to know if she is positive or negative. I would encourage her to have a swab test if she ever gets a recurrence. She could also look into the option of a Western Blot. Maybe @HikingGirl has info on that to share.

@JoanM How was she initially diagnosed? By swab or visual inspection? If by swab, did they specify type? By that I mean HSV1 or HSV2? HSV1 is usually (but not always) contracted through receiving oral sex from a partner with oral HSV1. HSV2 is almost always contracted through intercourse or skin-to-skin genital-to-genital contact. IgM tests should never be used. After 12 weeks, IgG tests will accurately pick up 70% of HSV1 infections (and will miss 30%) and 95% of HSV2 infections (and will miss 5%). The least reliable diagnosis is visual (wrong something like 40% of the time). The most reliable blood test is the Western Blot (after 16 weeks). Positive PCR swab tests are considered definitive, but negative results can mean there wasn't enough virus present at the time of the swab test at the location swabbed.

@JoanM Hopefully she will educate herself and learn how very common this is, even among women with limited sexual histories. There is no reason to think she can't lead a normal life and continue to have intimate relationships. For example, in the U.S., studies have shown that 30% of pregnant women have genital herpes as a result of HSV2 and an additional unknown percentage have genital herpes as a result of HSV1. Overall, 77% of pregnant women have oral herpes, genital herpes or both. Because they are pregnant, we can assume they are at the very least sexually active, and I would assume most have intimate partners. Yes, the stigma sucks. I agree with you there. For most people, the stigma is the most difficult aspect of herpes. Your daughter has been influenced by the stigma for 27 years, so it will likely take a little time for her to gain a different perspective, but it's likely she will do just that in time. In the meantime, I think it's important for her to feel her feelings as part of the grieving process. As a parent, I know that's hard, but I do think it's really important. You may want to direct her to Ella Dawson's talk on the topic. She's a young woman with genital herpes.

If she's not comfortable for whatever reason, that should be honored, I think. But if it helps, it is my understanding that it is best to wait 7 days after the skin is fully healed. Additionally, it's my understanding that her HSV2 infection should largely protect her from contracting HSV1 (the reverse is not true, however).

@JoanM I'm so sorry you're daughter is having such a difficult time. Many newly diagnosed people experience the types of thoughts and emotions you're describing and most do feel much better after taking time to grieve and learn more about HSV. For me, that grieving process took 2-3 months but everyone is different. I really like this infographic that outlines specific steps in dealing with a diagnosis and then moving on. https://68.media.tumblr.com/7936949ade77ef3e6d4fe314eeb89185/tumblr_inline_ohi27qB2PV1tf6lgo_1280.png You'll notice it includes an intermediate step of using a STI specific dating site to gain confidence before returning to more "normal" means of dating. Take that for what it's worth as this infographic was promoted by an STI dating site. Many people do not find that step necessary. However, I think the infographic is otherwise excellent and a pretty accurate portrayal of the ways in which many people successfully move past a diagnosis. (((HUGS)))

@daisychainlady My own doctors are poorly informed about how herpes presents and is transmitted. The nurse practitioner who provided my positive test results told me I had only been "exposed" and did not "have it" because I did not have symptoms. The doctor I followed up with said I could only ever transmit it if I had an active ulcer. Meanwhile, the CDC says "Most individuals infected with HSV are asymptomatic or have very mild symptoms that go unnoticed or are mistaken for another skin condition" and "Transmission commonly occurs from contact with an infected partner who does not have visible lesions and who may not know that he or she is infected." (Source: https://www.cdc.gov/std/herpes/stdfact-herpes-detailed.htm) Something like 80% of adults have either HSV1, HSV2 or both. More than 80% of those HSV+ people don't know they're infected, yet they are capable on transmitting herpes to a partner who is not yet infected with the same type. (An exception to this is that having an established HSV2 infection largely protects someone from acquiring HSV1. The reverse is not true.) And as you pointed out, even those who are infected may not be aware of how transmission works, either due to poor sex education, media misrepresentation, or poor information from doctors. Doctors seems to be most focused on treating symptoms in the minority of people who develop symptoms. IMO, that approach is understandable, given how pervasive HSV is and how it most often goes unnoticed or has very mild symptoms. But it would be great if they also educated patients who are not presenting with symptoms to help people make more informed personal choices about testing and safe sex, and also to help reduce the stigma associated with such a common virus.

@trying2bok I've disclosed many times now and still found your post very inspiring! And I'm especially exciting about Guy #7. :)

Love it! Thanks for sharing!!

@daisychainlady My understanding as a non-medical person is that an existing established infection will largely protect you from contracting the virus in a new location. By established I mean that you've had the virus long enough to build sufficient antibodies which typically takes a few months. So you are largely protected from acquiring the virus in a second location but your bf may want to be a bit cautious for the first few months so he does not infect himself in a second location. I believe that's also uncommon, but not rare. It is also my understanding that most people who acquire GHSV1 genitally only have that first outbreak, if they have one at all. Some have recurrences but usually infrequently. I don't recall the average for people with GHSV1 recurrences. I think it's something like once per year or once every two years. A small minority of people have more frequent recurrences and those are the people who typically opt to take antivirals, though it really is a personal choice, regardless of outbreaks. From what I can tell, most people with herpes of either type in either location do not take antivirals. In fact, most people with herpes are unaware they have it at all. Those who do take antivirals take them for a variety of reasons. Some take them daily to suppress outbreaks because they get frequent symptoms. I believe this is more common among people with genital HSV2 but certainly not limited to them. Some people take antivirals episodically (for a few or several days) when they get outbreaks to speed healing, or they take them for a few days when they expect a triggering event (such as someone with cold sores who is going on a tropical vacation and is triggered by excessive sunlight). Some people take a smaller dose daily to reduce transmission risk to a HSV- partner. Again, this is more common among people with HSV2 which, on average, asymptomatically sheds about twice as often as oral HSV1 and three times as often as genital HSV1. In general, doctors do not seem to recommend antivirals for people without bothersome outbreaks, regardless of HSV type, but some people choose to take antivirals to minimize transmission risk as much as possible, for their own peace of mind and/or because it is important to their partner. As for whether sex will trigger outbreaks, impossible to say. For some people, friction is a trigger, whether it's masturbation, sex, certain exercises, shaving. Only time will tell. Also, people who have recurrences generally have more of them during the first year, so if this does happen with him, it may be a temporary situation. Oh, you had one more question about triggering outbreaks. I have never seen anything to suggest asymptomatic shedding in one infected partner triggers outbreaks in another infected partner. I would not worry about that. I would just refrain from contact during outbreaks as you have already been doing. I'm sorry you guys are going through this. Many people don't know herpes can be transmitted in this way. Even if they did, life would be pretty boring if we always prioritized safety over pleasure. It sounds like you took the reasonable precaution of refraining from contact when risk was high and rolled the dice when risk was very low. That is what most people do in life and for good reason. Hang in there. (((HUGS)))

@Bambina2 Congratulations on disclosing to your husband, Bambina. I know you've been agonizing over it for a long time. I'm glad to hear the conversation went well.

Wow! I really admire how you handled this situation. You're such a strong woman. A result of 5 is considered a true positive. False positives can occur, but almost always in the range of .90-3.5. My own result was > 5.0. The lab did not give an exact result, just "greater than 5.0" which would indicate an established infection. I did go ahead and retest for my own peace of mind, like in case there was some lab mix-up, because I did not have obvious symptoms. Got the same result, but it was reassuring.

@hithere As Camilo stated, false positives can occur when the value is below 3.5. Additionally, the lower the value, the more likely it is a false positive. As you get closer to 3.5, it is less likely to be a false positive, but results closer to .90, like yours, are more likely to be false positives. Also, as HikingGirl stated, IgM test results should be disregarded.

@camilo Unfortunately, coconut oil is not okay to use with condoms.

@Molly FWIW, in my experience disclosing my HSV2 status, I have not noticed any pattern that suggests depth of emotion is the major driver in acceptance. I'm sure it may be one factor, but one of very many factors, and sometimes someone can feel strongly about a partner but other factors have greater influence. I've experienced someone with feelings for me being unable to quell his anxiety about possible transmission, and I've experienced someone I've not even met being absolutely fine with the concept. Those who have been fine with the risk have been fine with it for a variety of reasons. Different people assess risk differently. One guy said he would never choose not to date someone for this reason. Another said he had oral HSV1 and therefore understood how it all worked and was not afraid. One guy even said he felt safer with me than someone else because he knew I was honest, aware of my status and taking precautions. The one time someone disclosed to me, years before my own diagnosis, I don't recall factoring in my depth of feeling for him. As Camilo stated, given the age group we're talking about, it is likely he will encounter this with half or more of his prospective partners but most will be unaware of their status. It's possible that after doing some research, he may be able to put things into a new perspective, but also possible he will prefer to believe he is somehow immune. Regardless of his thinking, it is in your own best interest to be with a partner who is not overly concerned about contracting HSV. I agree with the suggestions to consider the letter therapeutic rather than sending it.

@Lovepink44 I just read over your first comment and see that it appears they *only* ever gave you an IgM test, never an IgG test. Is that correct? I'm hoping that perhaps when your swab test was positive, it reflected an established infection, rather than a brand new infection. Perhaps they administered an IgM test to rule out a new/recent infection, though I don't believe it's recommend for that anymore. I believe the current recommendation is to never use it due to unreliability. Had they administered an IgG test and it had been negative, that would have indicated a new or recently acquired infection. Perhaps the fact that your IgM was negative leads them to believe the infection is not new and therefore not of higher risk? Just a thought.

@Lovepink44 I've PM'd the link to you. In case you don't know how to access PMs, you click on the "inbox" link near the upper left of the page. (((hugs)))

@Lovepink44 Yes, the correct test is the IgG test. The IgM test should not have been administered at all. The results are totally unreliable. Do you have time to take an IgG test by any chance? I've used an online service that turned around my results in 48 hours. I can PM you the details if you'd like. In general, it is recommended to wait 12 weeks to take the IgG test as that is typically (up to) how long it can take to trigger a positive result. However, antivirals can slow that process. Obviously there were good reasons for you to be taking antivirals, but the one downside can be slower building of antibodies. Again, I am not a medical professional and all of my understanding comes from reading. I will PM you a link to a study on pregnant women, some of whom contracted genital herpes in late pregnancy. Perhaps you will find a different perspective in it, and if you do not, perhaps you can share it with your doctor.

I'm so, so sorry you're going through this and understand why you are so concerned. I'm not a medical professional, but from all I've read on this topic, those at greatest risk (BY FAR) of transmitting neonatal herpes are women who become infected in late pregnancy and do not yet test positive by the time of labor. In those cases, the risk is believed to be 30-50% (vs. only .02% for those who test positive). Studies indicate about 30% of women will test positive for HSV2 at the end of pregnancy, and an additional unknown percentage have established genital HSV1 infections which are equally problematic in terms of neonatal herpes, yet neonatal herpes is a rare complication in such cases (1/5500). The MAJOR exception seems to be women who contract it without having enough time to build sufficient antibodies prior to labor.

I'm so sorry you're going through this. I know what it's like to feel blindsided by test results, and you may need time to feel feelings about this, but it will get better with time. What you have described is not an uncommon scenario. Most standard STI panels do not include HSV testing, so many people assume they have been tested for "everything" when they have not. Additionally, most people with genital herpes are either asymptomatic or have symptoms so mild, they go unrecognized or mistaken for another mild skin condition (source: https://www.cdc.gov/std/herpes/stdfact-herpes-detailed.htm). Also, please know that HSV2 is extremely common among women in our age group. I'm in my late 40's and was surprised to learn how very prevalent it is among our peers. You are far from alone, except you know your status while most people HSV2+ people don't. Hang in there! (((HUGS)))