HikingGirl

Welcome, @striker0920. There have definitely been others in your shoes who have posted here. I recommend using the search bar on this page to type in a few key words to see if you can find them. I guess the only thing I would add to what has already been said is that there isn’t any guarantees with HSV and aside from the unwarranted and ridiculous social stigma, I think one of the most difficult mental blocks with people is not being able to control the outcome. Maybe you’d spend the next 40 years together in bliss. Maybe not. Maybe you’d acquire HSV and join the majority who have no noticeable symptoms. Or maybe not. You’re not guaranteed to get HSV, by the way. I acquired HSV1 and HSV2 before I was married but didn’t know it until I had a surprise diagnosis after my divorce. My ex-husband later tested negative and we were together for 16 years using no precautions whatsoever. There’s also no guarantees about future partners being HSV negative. I guess what I’m trying to say is that no matter which direction you go, you’re kidding yourself if you think one direction is safe and will protect yourself, while the other direction is full of risk and consequences. Every direction, every option we have in life comes with risk, uncertainty and consequences. Good luck.

@jm6 At the time I was diagnosed, I had just started seeing someone casually about a year after my divorce. I had no reason to think I had HSV, I just randomly asked for STD testing for good measure when I went in for a Pap smear. I’d had seven different partners at that point, and no obvious symptoms (just some itching I attributed to yeast infections). The new guy and my ex-husband both tested negative after I had the western blot done, which means I had to have picked up HSV 18-25 years earlier. So for me, it was literally decades after acquiring the virus that my IgG for HSV2 was 3.27 and still confirmed positive with the western blot.

You’re welcome. I know. {{{hugs}}}

I think it’s awesome that you found your strength and disclosed. You mentioned that you felt you did a really good job with staying calm and unemotional. Do you have any guesses as to how you were able to do that? Even though I feel totally different about herpes now than two years ago when I was diagnosed, I do get emotional quiet easily about anything and I’d love to someday disclose in a calm and unemotional way! FWIW, the IgG tests miss a significant number of HSV1 infections. I forget the stat. But a PCR swab is considered definitive. Definitely his loss. Thanks for sharing your experience with us.

I spent hours and thousands of dollars at the vet treating this unknown skin condition until I finally found a doggy dermatologist at $300/visit who looked at a sample from his tail under a microsocope and said I was dealing with a severe systemic yeast infection. None of her recommended treatments worked, and he didn’t get better on his own like my ex-husband was convinced he would. He lived in a cone so he wouldn’t chew himself to death. So it was up to me to find some answers. And let me tell you—the next two years were FUCKING HELL. I had ZERO support or advice from anyone. I spent COUNTLESS HOURS scouring the internet looking for answers. I spent THOUSNDS of dollars trying new products. I had to bathe him TWICE A WEEK for TWO FUCKING YEARS to wash off the toxins which created the inflamed skin as the yeast SLOWLY died off and exited his skin. He wore that fucking cone.....I kid you not....24/7 for over two years unless I occasionally had him within both SIGHT and SOUND of me. If I had to run something upstairs or use the bathroom—the cone went on. I switched to a raw meat diet even though I was totally grossed out by it and tested him for food intolerances so I could avoid foods with those ingredients. The whole fiasco was just fucking murder. It’s been years now and my blood pressure is still through the roof just writing about it. He got better. I finally found the right combination of the right diet and 9 different supplements he took for the next 4 years. It was slow as molasses though, and my coworkers can tell you I was on the edge of a nervous breakdown for a very, very long time. The last few years of his life were the healthiest he had ever been. I can’t even imagine how much pain and discomfort he was in during those years, especially not being in control of his environment and not being able to speak. I genuinely don’t know how I survived it either. I felt so alone, so frustrated, and so pissed off that everyone I knew had healthy dogs they never took to the vet and fed cheap kibble from the grocery store. It was totally unfair. Well that was a much longer post than I anticipated. :) I hope I’ve conveyed that you’re not alone with how you’re feeling, and that even when you think you’ve exhausted every new possibility, you probably haven’t. Keep going. You’ve already been through hell and you’re still standing. We’re rooting for you.

@MissLamentful There is no question you’re going through hell without a moment of relief. Anyone in your situation would be on edge and at their wits’ end. I know we’ve never met, but if we were friends, the first thing I would tell you is that you are not alone. It’s true that you may not find a lot of people at this particular forum who can relate to dealing with HSV, autoimmune disorders, and a recent sexual assault. Likewise, a forum for fibromyalgia, endometriosis, celiac or psoriasis might not be of any help when it comes to herpes. It may be years before you meet someone “like” you. Maybe never. But they’re out there. If you haven’t done so already, you might try typing “autoimmune” into the search bar on this forums. I believe the default setting is that if you PM someone, it sends an e-mail to their e-mail address. I mentioned a naturopathic doctor in a different thread because you’ve got a shitload of different things going on right now, and there might be a benefit to having a highly trained and qualified professional look at what I’ll call your big picture—your physical symptoms, your labs, your lifestyle, and what you’ve tried so far. If you’re interested in learning more about how diet might help you, I can think of lots of books and movies to get you started. Documentaries like Forks Over Knives or Fat, Sick & Nearly Dead. Books like How Not to Die (Greger) or Eat to Live (Fuhrman). I’ve been a vegetarian for a decade, have close friends with celiac, coworkers with fibromyalgia, my sister has sworn off sugar, friends with food intolerances, and my mom has thyroid issues and leaky gut. I feel Iike I’ve been exposed to every kind of restricted diet there is. The internet is full of a lot of conflicting information. A naturopath will tell you with confidence what you should and should not eat. On a related note, not every dietary restriction will be forever. Will you need to avoid gluten forever? Yes. Totally doable. Thousands of people do it every day. If you’re restricted from things like legumes and GF grains for leaky gut, that’s usually just until your gut heals. Then you can slowly reintroduce those foods. Here’s what I know about heavily restricted diets: There IS food to eat. It’s not in a restaurant (or at least very rarely) and it’s not in a package. It’s not convenient and it’s usually not quick either. I promise you there is food to eat. But it’s going to take a lot of time and research to find recipes and then to prepare them. Research and education go a long way here. I’m currently taking an online cooking course for a plant-based diet and even though I cook often, I’m only a third through the course and already learning all sorts of stuff I can do differently to make my food taste better, cost less, and spend less time in the kitchen. If you need ideas, once you’ve worked with a professional and know what your diet needs to include or avoid, feel free to PM me. I’ve had enough exposure to restricted diets with friends and family (and to an extent myself), I’m confident I can come up with some ideas. Moving from physical to mental/emotional health for a moment, I second what @dumfounded (now @username) said about healing from the sexual assault. I hope you have been able to find resources—be it a trusted counselor or a support group—to help you start the healing process. Another idea is to find support groups for the other autoimmune disorders you’re dealing with. Some may be online only, but if you can find an in person group of some sort, it can make a big difference. The kind of chronic pain you’re dealing with is enough to make suicide very attractive. I hope you’ll dig deep and find even a speck of strength to try some more things. When we’re going through hard times, it’s our human tendency to think that things will never improve. And when things are going well, we’re always somehow surprised when that doesn’t last forever! I remember having a UTI a few years ago which took six months to heal. The chronic pain from that alone was truly hell. It gave me a whole new level of appreciation for what sufferers of chronic pain deal with. One idea I’ll throw out for consideration is a Mindfulness Based Stress Reduction Class (MBSR) class. Again, I think an in person class would be great and they’re all over the country, but there’s also online classes too or a very long book by the program’s founder. A quick Google search will get you started. I’ve heard a lot of really good things about it, and plan to take a local class where I live this summer once I get moved. It was designed to help people who are dealing with chronic pain and other issues that are difficult to treat. Finally, and please take this with the love and compassion that it’s offered with....healing is going to be HARD. Do you want easy? Or do you want relief? You are not the first person to be in an impossible situation, who feels totally alone and helpless, and completely fed up. I’ll never forget the two years of hell I went through with my dog’s systemic yeast infection. Who’s even heard of a yeast infection with a dog, right? Almost no one—that’s who. My sweet Teddy, a golden retriever, passed away in November at age 15 years and 8 months. I never thought he’d live past the age of 8 or 9 because of his numerous, unending health issues. But the worst of it was the systemic yeast infection that developed around age 10 or 11. If I could post pictures, I’d show you pictures of how the skin on the underside of his tail would become flaming red and he’d chew it raw. I had to shave the fur to treat it and he loooked just ridiculous. Or the hot spots he’d develop constantly between his footpads. I could fill a 5 gallon bucket with all of the soaps, shampoos, sprays, lotions and potions I tried on him. I’m convinced he developed this because of some extremely strong medication he was on for a long time to treat allergies. It’s the same medication they use in humans who receive organ transplants. It just obliterates the immune system so that their immune system won’t reject the new organ. ........

@MissLamentful Have you ever tried seeing a naturopathic doctor? I have two friends with autoimmune disorders, another with leaky gut, which my mom has also. They’ve all had success with more fine-tuning of meds, major diet changes, and other treatments. I don’t pretend to know what you’ve been through—it sounds like a LOT. I thought I’d just throw this out there in case it gives you another lead to follow in search of some relief, which I hope comes soon for you!

Wow. Those numbers are really interesting. When you look at these, it’s no wonder genital HSV1 is being diagnosed so frequently. Thanks for sharing!

Your brain is like a giant repository of statistics, @optimist. I don’t know how you do it! :)

That is true. Since oral HSV2 is not common, and it much prefers the genitals to the mouth, it’s just less likely to have been the means by which this young girl acquired genital HSV2.

@LongLife88, feel free to share this link with your stepmom: https://westoverheights.com/wp-content/uploads/2014/08/Updated-Herpes-Book.pdf It’s a short handbook written by a nurse practitioner who not only studies and researches herpes, but she ran her own STD clinic for over 30 years so she has more clinical experience than most doctors. She’s also the herpes expert for WebMD and she has a full book which is easy to read if you (or her) want more information. Facts about transmission start on page 16 of the handbook. I didn’t know whether to laugh or cry about the separate dishes!

We’re always hardest on ourselves, aren’t we? You didn’t know. I didn’t know. Most of us are here because education around herpes is sorely lacking in this world! Transmission can occur with your very first sexual encounter. I wish I had something wise to offer about the relationship aspect. I just wanted to say that all of us—including you—are doing the best that we can with life. I’m so glad your friends have been supportive. Don’t forget to be compassionate and supportive toward yourself. {{hugs}}

I absolutely love everything about this post!! You are such a rock star, @CM! I’m also so excited to see someone else mention Adrial’s home study course. I’m only about a fourth of the way through it (I’m in the middle of moving and often am trying to do too many projects at once), but I agree that it’s really fantastic. I was really, really impressed with the first module. Since I’d like to try dating again this year, I’m really looking forward to the rest of the course. Thank you for sharing your positive and encouraging story with us! <3

You’re most welcome, @butterfly2018. Adrial stopped the calls after a few months. He didn’t say why, but I know he was recently married and if I recall correctly, was expecting the birth of his first child. This community has been such a wonderful resource!!

Are you asking if you can give your HSV1 to him and reinfect him? I once had a physician’s assistant tell me that I still had to be careful with HSV partners (I have both strains) because my strain and his strain wouldn’t be identical and we could pass it to each other and theoretically have totally different types of outbreaks. This came up right around the time I had the western blot done, so I asked Terri Warren about it. Here’s her reply to me via email: “While that’s conceptually true, experts agree that there is no clinical implication to this theory and we do not discourage this kind of contact nor do we suggest that you be careful about transmission with someone who has your same type (1 or 2).”

I was diagnosed with HSV1 and HSV2 about a year after my divorce. I had no obvious symptoms. My ex-husband (once I told him) tested negative for both and we were together 16 years. So yes, it’s possible. Further, my index value for HSV1 was 44. I’ve never had a cold sore. And my index value for HSV2 was 3.27 (later confirmed with the western blot test) and since my ex was negative, it meant I’d had herpes for 18-25 years. Like @optimist said, beyond telling you whether you’re positive for antibodies or not, the index values mean nothing. Here’s the hard part—as you’ve already discovered: It’s probable you’ll never know when or where you got HSV. I know you’re searching for answers. I know you feel a need to know. The sooner you can get comfortable with uncertainty, the sooner you can move forward. HSV comes with a shitload of uncertainty. {{hugs}}

Getting genital HSV2 from oral sex is so unlikely I personally would rule it out. As @annalove said, skin-to-skin genital contact (without intercourse) is a common way that HSV2 is transmitted. That’s why condoms will never offer full protection from transmission, because they only cover some skin. You could order another IgG test in a couple of months to see if there’s any change, or you could seek out the western blot test, which is far more sensitive (and acccurate). It’s only done at the University of Washington, so you either need to work with them to have blood drawn and sent there, or you can work with the Westover Heights Clinic (online) to have them order it for her.

Terri Warren, a herpes expert, has said that beyond detecting the presence of antibodies in your body, the number really doesn’t mean anything. There is no known correlation (from what I’ve read) between the index value and outbreaks, transmission or how long you’ve had HSV. Index values over 1.1 are considered positive. However, there are some false positives with very low values. Warren recommends further testing (like the western blot) if you have an index value between 1.1 and 3.5. In my own case, my HSV2 index value was 3.27 and I later confirmed positive with the western blot. When my ex-husband later tested negative, I realized I had herpes for 18-25 years and my symptoms were so mild (mostly itching) that I had absolutely no idea I had it. Most people with HSV either don’t have outbreaks, or they are so mild they’re mistaken for things like yeast infections, jock itch, ingrown hairs, etc.

I’m sorry you’re hurting, @sadgirl111, I’ve been there. For seven months following my own diagnosis, I was borderline suicidal and didn’t feel worthy to talk to strangers. A couple of thoughts that crossed my mind as I read through your post..... It’s not uncommon to have more frequent outbreaks when you’re new to herpes. Your body is till trying to get a handle on it. You may find that outbreaks are much less frequent a year from now, so hang in there. You could also try a different antiviral. My outbreaks are very mild, but even so, Valtrex basically did nothing for me, but acyclovir has been fabulous. Might be something to consider. No doubt it must be really hard to get a break from thinking about herpes if you’re consistently dealing with symptoms. It sounds like stress is a trigger for you. Not much you can do about your hormones and menstrual cycle, but this might be an opportunity to try some new things to manage stress. Maybe that looks like more sleep, more healthy foods, exercise, journaling, time with your friends, meditation. I had just started exercising regularly about 4 months before my diagnosis, and thank god for it, because it realy kept me sane. Even in the last couple of months, after my dog passed away and now I’m having to sell the house I’ve lived in longer than any other, I’m buying a condo, I’ve been sick, I’m doing the job of three people at work......that stress and the grief have caused me to really slack on my exercise routine. As a result, I’ve been feeling really down and not myself. I forced myself to yoga this morning and when I got home, I realized I was actually feeling pretty happy. It finally dawned on me that the lack of exercise is really contributing to my sadness and anxiety right now. So whether it’s exercise or something else, find what works for you. Finally, and I know this is getting a little woo-woo...I definitely believe in a mind-body connection. If sweeping things under the rug is a common coping mechanism for you, you might feel better spending some time with a counselor. Not only are they wonderful listeners....way better than even my closest friends.....but you might find new ways of dealing with stress. Seeing a therapist has such a negative stigma in our society and I think that’s so unwarranted. Adrial has said that getting herpes has a way of bringing all of your shit (baggage) to the surface. It feels terrible, but it does present us with an opportunity to deal with some things we may not have dealt with yet or even known how to deal with. I’ll be sending some good vibes your way that you can get some relief! {{hugs}}

How about trying the pill? Maybe preventing ovulation would help? Or you could work with someone knowledgeable about hormones (a few naturopaths are especially good at this—much more so than a typical doc) to get their feedback on how the monthly rise and fall of hormones might be affecting things. Also, since you’re only one month into your diagnosis, you may find things lessen with time. It’s common to have a couple of outbreaks immediately following the initial one. I kept a calendar for a long time to track my symptoms. You might find the timing is purely coincidental.

I’m convinced my outbreaks are tied to my menstrual cycle. My outbreaks have always been very mild, and I’m old enough to not be ovulating every month, but I’ve found antivirals to be very helpful. It’s pretty much a dream come true to not be dealing with itching all the time.

Have you ever read anything by Brene Brown? She has entire books on vulnerability. I think you’d love “Daring Greatly.”

Soap kills the virus, so don’t worry about it spreading through soap! Same goes for the shower itself. HSV dies within seconds of leaving the body (I have 10 seconds stuck in my head, but don’t quote me on that). There have been no documented cases of someone getting HSV from sharing a towel, but because viruses love warm, moist environments, experts still suggest not rubbing your genitals with a towel and then immediately handing it off to another person just to be safe. Again—we’re talking seconds here, not a towel that has been hanging on a rack overnight. Shower as usual. Long, hot ones are the best! :)

So I guess my questions are 1. How do I find a Dr. Experienced with HSV enough to confirm that I have it, because my level is highly suggestive that I have it, though I haven't had an outbreak. 2. Has anyone successfully not transferred it without condoms? 3. Should I get more confirmation through the Western blot or should I just accept that I likely have this. Trial and error. It’s shocking how many health care providers are misinformed or uninformed about HSV. If your IgG index value is that high, you definitely have HSV. And if you had the IgG test, it will tell you whether it’s HSV1 or HSV2. Just call the doctor’s office and ask to have the labs pulled so they can tell you the type, or ask for a copy so you can see for yourself. I unknowingly had HSV1 and HSV2 the entire time I was with my ex-husband (16 years). I was diagnosed after our divorce, and he later tested negative for both types once I shared my results with him. I have no idea why he never got it and most likely will never know. I personally wouldn’t bother with a western blot. An index value of 16.4 is well outside the range of uncertainty. (Experts recommend further testing if your index value falls between 1.1 and 3.5.). 89% of those with HSV don’t know they have it, either because they don’t have any symptoms, or their symptoms are so mild they mistake them for other things. That’s how I went 18-25 years with absolutely no clue I had HSV.

Mine was also a series of breakthroughs. First was EMDR from a therapist and seeing connections between how I felt about my diagnosis and how I felt about some childhood sexual abuse I had experienced. Second was education and recognizing that not only was it extremely common, but plenty of people still go on to have relationships. Third—and probably the biggest—was a small group shame resilience course I took and realizing that *everyone* feels shame about *something*. Finally, even in the two years since my diagnosis, I continue to have shit thrown my way. It’s like the universe knows I need continual reinforcement of the fact that shit will always happen, and how I respond to said shit is sometimes the only thing I truly have control over.