HikingGirl

If you really want to make a safer world start with education about HSV so that when some teen gets it s/he doesn't contemplate suicide. Or when this shows up in a long term monogamous relationship it doesn't blow up a family. Or when you disclose to someone their response is, "it's all good that's just part of having sex." I apologize to the OP for hijaking the thread, but I have to say I just I love this comment. I’m approaching the two-year anniversary of my diagnosis, and I can’t shake the feeling that I need to do my part to improve education and understanding in some way. I’ve occasionally attended a new church in the last year which offers a sex education class, and sometimes I think to myself, “Hmmmm...maybe I should have a chat with whoever is teaching it.” Or I think I might be more open about my status with a few close friends (I’ve only told one). I have such admiration for @Adrial for standing up to the stigma and really doing something about it. But I do wish I had more ideas for chipping away at the stigma in smaller ways.

@powerhouse3248, I was with my ex-husband for 16 years and he never got HSV from me. I have both strains, and when when I was diagnosed after our divorce, I told him about it and he later tested negative for both. So I had been carrying both strains for 18-25 years with absolutely no idea. I know my HSV2 is genital, but since I’ve never had a cold sore in my life (I’m 44), I don’t know for sure where the HSV1 is. What I do know is that statistically speaking, it’s far more likely that I have oral HSV1. I have no idea why my ex didn’t get either strain from me over 16 years. It just is what it is. Oral HSV1 is something that the MAJORITY of adults carry, and only 1/3 of those ever have a cold sore. Think of every woman you’ve kissed. Every woman who has performed oral sex on you. The majority of them have HSV1. Now think about breaking it off with this woman and dating new people. The majority of them have HSV1 too. I’m not trying to say that your worry or concerns are not valid, only that a little perspective might be of help.

You need *sexual* (as in genital to genital or oral to genital) contact for transmission between people. Transmission to other parts of your body is very uncommon, and usually happens with the first outbreak. By all means, wash your hands if you’re touching an active lesion. Otherwise, I wouldn’t lose a lot of sleep over it. Terri Warren, an expert in herpes, has a great handbook here: https://westoverheights.com/wp-content/uploads/2014/08/Updated-Herpes-Book.pdf I’m also a huge fan of her book, which goes into a lot more detail but it still very easy to read. I’m afraid I can’t answer the rest of your questions—not just because I’m not an expert and it’s hard to remember every intricacy and statistic—but also because there’s just a lot of uncertainty with herpes and guarantees are hard to come by.

Learning to be okay with uncertainty is definitely an ongoing process, @butterfly2018! I see it in all areas of my life now and there’s no question it still drives me a little crazy. The other night I had an opportunity to hear Captain Scott Kelly speak (the astronaut who spent a year in space). One point he emphasized was letting go of what you can’t control. He recalled an incident while he was on the International Space Station when they got word that a satellite was barreling right at them and would come within a mile of the ISS. There was no way to stop the satellite and it might hit them or it might not. So Kelly starts closing hatches and making all kinds of preparations. When he’s done what he could do, he goes over to the Russian side.....and they’re eating lunch. LOL They figured, this thing might hit us and we’ll be dead instantly without even realizing what happened, or else it will miss us, so......we’re having lunch. :)

That’s great news, @jm6. What a roller coaster ride you’ve been on! How awesome to finally have answers. It’s interesting what Warren said about likely always testing positive on the IgG. Thanks for giving us an update.

Thanks for sharing this! I remember when you first posted here and it’s so heartwarming to read about how quickly your perspective has changed. I think your guesses about how the transmission may have happened sound very likely. I also enjoy reading stories from such varied backgrounds because it reinforces the fact that HSV is extremely common and anyone could have it. Thank you for taking the time to share your experience with us.

I wish I knew, @Butterfly2018! It could be lots of things. Maybe since I’d had it a long time I wasn’t shedding much. Maybe he just has thicker than usual genital skin. Maybe he just has a really good immune system. Maybe having pubic hair helped—who knows. We were married for 15 years, but we also weren’t having tons of sex the last few years when the relationship was especially strained. Because I had also been prone to yeast infections on and off over the years, I assumed all discomfort (mostly itching for me) was that. I now believe a good chunk of those supposed yeast infections were really herpes outbreaks. Since I naturally avoided sex when I had those symptoms, I’m sure that also helped. I spent a long time being pissed that I got HSV from a small number of short term partners with condoms, but he didn’t get it while we were married. Now? Oh well. It happened. And it just is what it is. I mention it here a lot because when we’re first diagnosed, it’s common to think transmission is a given and it’s not. We just don’t know and not having that control is hard to learn to live with.

Congratulations!! Thank you so much for coming here and sharing this with us! <3

God, can I ever relate. I had an STD panel done after my divorce, and was floored to find out I also have HSV1 and HSV2. When my ex-husband later tested negative for both, it meant I’d been carrying the viruses for 18-25 years with absolutely no idea (I probably had HSV1 for even longer). In hindsight, I believe the frequent itching and rare sensitivity I had were actually symptoms of herpes (they went away when I tried antivirals). The nurse practitioner who gave me the news gave me similar advice....”if you have an outbreak, just have him use a condom.” The IgG is very accurate for HSV2 (it sometimes gives false negatives for HSV1). Welcome—you’re not alone and the shock does wear off. :) {{{hugs}}}

You should totally disregard the results of an IgM test. I would go back to your doctor and ask for an IgG test (or find a new doctor). Everyone produces antibodies at different rates, but by the time you get to 16 weeks post exposure, 97% of those with the virus will test positive. At six weeks, only 70% of those with the virus will test positive. So you should wait a while before retesting. Also, be aware that the blood tests miss a significant number of HSV1 infections. I forget the statistic, but it was a chunk. Keep in mind the blood tests won’t tell you where someone has the virus. Most adults already have oral HSV1, and few of them have symptoms, so a positive blood test wouldn’t mean you necessarily had the virus genitally. If you’re not having any symptoms, I wouldn’t lose a lot of sleep over this. Retest at 16 weeks and be aware of the risks going forward. Condoms lower risk of transmission, but they don’t eliminate it. I got HSV and my previous partners before marriage always used condoms. At the same time, transmission is not a given. I have both HSV1 and HSV2 and yet my ex husband of 15 years didn’t get either (we didn’t use condoms and I was diagnosed after the divorce). Good luck.

Canker sores are definitely unrelated. If you’re concerned that the sores in your mouth might be HSV, go back to the doc and ask her to swab them too. Getting your test results back may help to answer some of your questions about the whey/when/hows of it all. Hang in there!

If you want to date, I think you should go for it. Someday will turn into never if you wait for circumstances to be just right. You might have a disclosure that is better than your wildest dreams. You might never need a bone marrow transplant. You might have a long-term relationship and never transmit HSV1. You might get HSV2 and never notice (nearly 90% don’t). You might meet a terrific, imperfect guy who loves you in spite of your own imperfections.

I’m afraid I’m not any help with the how other than being really factual and straightforward. If I were in your shoes, I think I’d have the talk before the getaway. Preferably as soon as possible. I’m worried that if you wait until you’re all packed or in the car, and if the disclosure doesn’t go as hoped, it will make for an extremely tense and awkward getaway. While some recipients of a disclosure might not give it a second thought and want to move forward, some may need some time to think/process/research.

It sounds really positive that has changed his mind and wants to continue dating! There will probably always be some degree of asymptomatic shedding. In the end, you’ve disclosed and if he’s willing to accept the risk of transmission, your job is to find a way to live in the present instead of the future (and drive yourself crazy with what ifs). :)

I can absolutely relate, @Dumfounded. I was married for 15 years and was diagnosed both types of HSV about a year after my divorce.I had gone in for a Pap smear and spontaneously asked for STD testing because I had just started seeing someone long-distance. It was a total surprise to me at the time, although in hindsight I now know that all of that itching and those supposed yeast infections I was getting were really herpes outbreaks. The kicker? I told my ex and he tested negative for both. Unbelievable. It’s been almost two years since my diagnosis and I’m still surprised. 16 years of unprotected sex and he doesn’t get it, but I got it using a condom with a small handful of short-term partners before him. (Mr Long Distsnce also tested negative.) So I’m frequently preaching here that transmission is not a given, and it’s so important to be tested and not just assume that someone has it. Indeed, our education regarding STIs suck.

I thought I read once that some slight variation was natural. I’m glad you’re going to do the western blot for some answers once and for all!

^^^^^^ That’s what I was about to ask. The *majority* of adults already have HSV1, usually oral, and most don’t have symptoms. Only a third of those with oral HSV1 ever have a cold sore. If he tested positive for oral HSV1, he’s not going to get it “again” from performing oral on you. And he would be less likely to get it genitally if he already had the virus and had built up antibodies, although I believe it’s possible (just unlikely) to get it in both places. I hope someone will correct me if I’m wrong about that last part! Even if he already has HSV1, giving you oral during an outbreak is not a good idea.

Welcome, Christine. I am so happy to read that you’ve changed your mind and you’re still here—literally and figuratively! In my one year post (https://herpeslife.com/herpes-forum/discussion/8587/one-year-later) I talk about how I was researching suicide methods before I sought help and became involved with these forums. What a difference a little time, information, and support makes during our darkest hours. If there is one thing I can promise you, it’s that you are most definitely not alone. {{{HUGS}}}

I’m not an expert, but here’s the scenario I’ve read about it affecting the number. Let’s say you have a primary outbreak and you’re diagnosed visually or by swab and the doctor puts you on antivirals right away. If you then want to get a blood test, it can make it appear that you’re testing negative because it slows down the virus and as a result the antibodies you’re just starting to build. Warren’s book says if you go on antivirals right away and do a blood test shortly after but test negative, you should really come off the meds for a couple of months and retest. Hope that makes sense! I’ve never read anything about lowering the number after you’ve tested positive. Maybe someday I’ll do another STD panel and see if my index values change since I’m on antivirals.

Yes. Terri Warren recommends stopping for a “couple months” to get a more accurate result.

@Tart, by all means, enjoy that shower! The risk of spreading the virus really only exists when the virus is new to your body and you’re still building antibodies. If it happens, it’s almost always during a first outbreak when a person doesn’t realize they’re touching HSV lesions. Maybe within the first few months...maybe. Either way, soap kills the virus. It’s always a good idea to wash your hands after touching an active outbreak or that general area when the virus is new. Otherwise, enjoy those hot showers!!! :)

Yes, it’s safe to get a massage. Asymptomatic shedding only comes from the genitals or the mouth (wherever you have it)—not anywhere else.

Welcome, @BoldAsLove. You are definitely not alone! I’m continually surprised by how often we have new people join us on this forum when you know that’s only a drop in the bucket as most people aren’t even aware they had herpes. When I was first diagnosed nearly two years ago, I felt so ashamed and alone I didn’t even feel worthy to talk to strangers! That craziness went on for eight long months until I finally saw a therapist, got educated about HSV, and started reading these forums. The more I experience loss in my life, the more I realize that support sometimes comes from the people I least expect it to and sometimes doesn’t come at all from those I do expect would be supportive. And as you described with your mom and best friend, just because someone loves you doesn’t mean they know how to be supportive. If you don’t feel like waiting two weeks to get more answers from your doctor, you could always call and request a hard copy of your lab results. Or you could leave a message with your doctor’s nurse and ask him/her to call you back with your lab results in hand. The big questions to ask is (a) did you have a swab test in addition to the blood test? (I’m assuming so, otherwise I don’t know how else you’d be diagnosed) If so, which type (1 or 2) do you have? And (b) which blood test did you have? The IgM (older, unreliable test) or the IgG? If it was the IgG, what was the index value (it’s a number)? Nailing down whether this is a new infection or not is totally dependent upon the tests you had done, which makes for an even a stronger case to get those detailed lab results sooner than later.

Help me remember..... the swab test came back positive for HSV1 and the blood test taken around the same time came back negative, right? No matter how confident the doctor is with making a visual diagnosis, I would only trust lab results. If so, that scenario generally indicates a new infection, but it’s worth noting that the IgG blood tests miss a significant number of HSV1 infections, resulting in some false negatives. And it’s possible to carry HSV for years and have a first outbreak years later. As a result, I’m not sure you’ll ever be able to say with certainty this is a new infection or not. Now from the sound of your situation and the timeline you described, it does seem very plausible and even likely that this came from the new beau. Symptoms generally start to show (if you get them at all) roughly 2-14 days after infection (maybe it’s 2-10 or 2-12 days—-I have such a hard time remembering!!), so it does fit with your timeline. But if you’re looking for 100% certainty, I don’t think it’s coming. :( One thing worth remembering here is that he may deny having HSV or deny giving it to you, no matter what you tell him. (I mention this because of comments he has made which you described in other posts.) An admission of having it, a willingness to get tested, or an apology...these things may never come. I hope I’m wrong.

It’s possible you have oral HSV1, which would explain no genital outbreak, right? Even with oral HSV1, only a third have cold sores. Without an outbreak, it’s true that you have no way of knowing the location. But statistically speaking, oral HSV1 is far more common than genital HSV1. Either way, I’m glad you’re feeling better!