montereypop

Same here - I didn't notice any particular food triggering an outbreak. Unfortunately, I suffer from migraines as well but foods don't trigger them either. I think anything that causes stress to your system, be it junk food, stress itself or sleeplessness will cause an outbreak. Apart from stress, I've noticed that too much friction may cause an outbreak or may cause them to become more visible.

As for your ex partner - HSV is a real mystery and I don't think anyone can say with certainty that a strong immune system will automatically mean that one is HSV asymptomatic or vice versa. Just as an example; I know of one particular person who is HSV positive, though mostly asymptomatic with very occasional (once or twice a year) and mild outbreaks. However, this person struggles with tonsillitis and catching a cold whenever its flu season. On the flip side, I don't remember myself catching a cold since getting covid two years ago, yet I struggle with monthly HSV outbreaks that vary in severity. What I am trying to say is that our immune systems and the way they respond to virus infections is still a bit of a mystery. You've mentioned that antivirals don't work for you. Whenever I take antivirals to treat episodic outbreaks, I tend to not achieve the best results either and usually I will experience an outbreak a month or so after with prodrome symptoms kicking in a week before. However, I've noticed that when I take antivirals (500mg valacyclovir) every day of the year, it drastically reduces the amount and severity of outbreaks. Speak with your doctor about the treatment options you have and try to find out what works best for you. I think it would be really good to have another doctor look at you next time you experience discomfort - most doctors will allow you to take a swab whenever you experience an outbreak. You can also try and document your symptoms (if you can see any) and show them to a doctor. Whatever it is you are struggling with, I am sure that you will learn to live with it and make the best out of life!

Hi Laura I'm very sorry to hear HSV is giving you such a hard time. Most people infected with the virus don't experience any symptoms, for others its merely an irritating skin condition, however, for some it can turn out to be a life changing condition. I can fully relate to your distress, I too belong to the latter group. Anyway, lets try and stay positive (pun not intended!) Obviously, seeking professional medical advice is much better than self-diagnosis, and I encourage you to try to get another swab or blood test done when having an outbreak and not taking antivirals. Have you ever tried to look up images of women experiencing similar conditions to you? Do their rashes and outbreaks match yours? It might be a fairly good indication if it is HSV or perhaps some other STI. Despite me knowing that I am HSV positive, and doctors confirming by looking at my outbreaks, I've never actually tested positive in a swab or blood test myself. My first blood test done roughly 5 years ago was probably too early since my initial outbreak which was why it might have shown negative. I had a swab done about a year ago while taking daily antiviral medicine which also turned out as negative. The doctor said that the medicine might have caused the test result to show as a negative. Either way, test results may be wrong, and they only matter to a certain extent. Even when they show up as positive, they only confirm a condition we already experience and have to learn to deal with in our future. Don't beat yourself up about it. Wait until your next outbreak and try to get another test done without taking any antivirals. Have another doctor look at your sores/rashes if you can. In the meantime, look for the things that help you deal with reoccurring outbreaks. Focus on the things that are GOOD for you and that make you HAPPY. IF there is one positive thing about getting HSV, then it is me learning to look after myself. All the best to you!!

Wow this is great! I'm curious to hear how you managed taking the meds while on pregnancy? Did you ever consider/worry about long term side effects of taking daily valacyclovir for years?

Hello there! Sorry to hear that you are feeling bad, HSV can make you feel really bad sometimes... Anyways, wouldn't a cold sore suggest that your Herpes is in fact oral? I'm not sure about how to interpret what your doctors said, but you having cold sores (even if only once) would suggest that you have the oral variant. Of course its possible that you have asymptomatic genital herpes too, though my experience is that genital herpes does like to make you aware of its presence... Also, it is possible to transmit oral herpes to genital areas. I don't think transmission its statistically as common as genital to genital, but nevertheless possible and something to consider in the future. Good luck!

I think you've got the right mindset to start getting to know people again. Obviously, its easier said than done, but you can use this condition to your advantage to filter out the people who are genuine about wanting to be with you. You have a positive mindset and I am sure things will work out great for you. Do please give us an update how things go in the future. All the best!

I think its pretty unlikely that you contracted HSV from a soap. It might be worth seeing a doctor nevertheless and have a swab or blood work done.

Hi bluey! We all struggle from time to time, but I'm sure most veterans on here will be able to share some positive stories that will make you feel a lot better about yourself. You might want to read through some of the success stories on here - it can be quite comforting to hear that so many people can have healthy relationships, a normal pregnancy, and all in all lead a perfectly normal life. Remember, people who might be HSV negative might deal with their own problems that can be an equal burden. How are you dealing with outbreaks? Are they bad or are you coping alright? All the best!

Hi Danielle! I share your pain, my first two years of contracting HSV have been pretty rough too and I was battling monthly outbreaks that probably resemble your "nonstop symptoms'. I'v had HSV now for four years and let me tell you, it will get better over time. Take care of your body, live healthy and try to reduce stress - your body will take care of the rest. I'm not sure what medication and therapy you are on right now, but I took valacyclovir daily for one year and it helped me a lot - I didn't get a single outbreak while I was on the long term therapy. Please go and see a doctor, make note of how many outbreaks you are experiencing, take pictures to show the doctor if necessary and have him suggest the right therapy for you.

I can absolutely relate! Depending on the severity of the outbreak, I'll experience at least one, if not a bunch of symptoms from your list. I'm afraid I am not one of the lucky folks where outbreaks come and go unnoticed, although taking daily anti virals as a suppressive therapy will help a lot in reducing the possible pain you feel. The leg pain used to be far worse during the first and second year after contracting HSV, but general fatigue, joint pain, as well as nerve pain and ever so slight cold-like symptoms have stayed with me until today as my most common prodrome symptoms.

Hi there! Testicular pain can have all sorts of reasons and doesn't necessarily mean you have contracted HSV, although, you might have noticed from reading through various posts and people's experiences on this forum, prodrome symptoms can vary from one person to the other. I can tell you that particularly sporty people can experience varicocele (a minor enlargement of the veins in one or both testicles) that can lead to a cramp like pain which comes and goes. For most people who've contracted HSV, the first outbreak will be one of the worst, and should you experience your first outbreak, then rest assured that the virus will make itself noticed! Many people, including myself, were bed-bound during the first outbreak and often experience fever and cold-like symptoms. I'd perhaps just look out for sores/rashes/bumbs that look like your typical HSV sore. Take a swab test if you do find any sores. Also, check with the girl how she is doing and if she is experiencing any symptoms. All the best!

Hi Tiredmommaj! Thank you so much for your response and sharing your experience with me! You've mentioned two very interesting points that made me reflect on my journey so far... Firstly, I wonder why there are doctors out there who are fine with patients taking valacyclovir daily for several years, and then there are others (like the two doctors I've met recently) who advised me to stay off the valacyclovir, or take it for a couple of months only. Are there different "schools of thought" when it comes to treating HSV? Both doctors I spoke to mentioned that they've had patients who had reoccurring outbreaks for years, and then suddenly they stopped and would be gone for years. Its almost as if they are trying to tell me to "just let the body do its thing" and I should only take the meds if I feel its getting a bit too much to handle. The second point which I find very interesting is that you initially thought your body should fight this out itself, but now you doubt if you should have taken the suppressive therapy from the very start. Sometimes I wonder if I was wrong in taking a the medicine (not long term treatment mind you, but as an episodic treatment) when I've had my first outbreak years ago. I've recently stopped taking valacyclovir daily to see if I can handle this without taking any medicine, and I'm shattered to find out that I'm moving from one monthly outbreak to the next, with milder outbreaks / prodrome pain in between the severer ones. You know, I always thought I'm a healthy guy; I don't drink, I don't smoke, I work out up to five times a week and I eat a healthy diet. Nevertheless, I still get these frequent outbreaks and I wonder if its to do with me taking the medicine too early and not leaving the body enough time to build up its own effective immune response. So now I'm stumbling in the dark, trying to find a way that best for me moving forward. BTW, how come you stopped taking valacyclovir during your pregnancy? Did you worry that it might affect the baby? Thank you so much for your time and all the best to you!

Hi mr_hopp Absolutely! Very glad you've mentioned this important point! My wife is HSV positive too, so transmission between the two of us has never been an issue after I got it aswell. We will absolutely consider taking daily anti virals once we're ready to start a family though to keep the baby safe. @mr_hopp Do you mind if I ask how long you've taken the medicine for? One of my major concerns has been if valacyclovir has any side effects when taken by both parents before and during pregnancy. Thank you for sharing your experience!

Hi everyone! Just a quick update for those who might have a similar question in the future and for those who end up stumbling across this post. 🙂 I had chat with another doctor who I have consulted before in the past just to get a second opinion on how to best use anti viral drugs to "treat" reoccurring HSV outbreaks. Just like the first doctor who I consulted earlier this month, she advised me to stop the daily suppressive therapy after being on daily valacyclovir (500mg) for the past year. She did say that I can go back on the suppressive therapy if I like, but should limit use of anti virals to a couple of months only - perhaps during particularly stressful periods of time or whenever I feel that outbreaks are particularly severe or reoccurring too often. As for why I shouldn't continue to use 500mg valacyclovir as a daily therapy, her argument was that doctors generally advise patients not to use this drug for several years in a row. Why? I asked. She didn't really mention any particular long term side effects of valacyclovir, however she said that it is common practice to advise patients to opt for episodic treatment over daily suppressive treatment. I'll probably continue to give episodic treatment a chance although I haven't been doing particularly well since stopping the daily treatment (1x severe outbreak and 1x mild outbreak after just one month of stopping daily valacyclovir). I also bought some L-Lysine supplements the other day just to try and see if this does anything to lessen the severity of outbreaks. Both doctors said that they've had patients who struggled with outbreaks for years, but then also had said outbreaks disappear for years straight. I guess our immune system is a constantly changing mystery!

Hi mr hopp, very kind of you to leave me a message! Indeed, I was amazed by how well I functioned during my one year on the daily suppressive therapy. The only minor annoyance was that apparently my doctor could only prescribe one pack at the time, so I ended up having to make several trips to the doctors and the pharmacy during that one year. A sacrifice I'm more than willing to make for the extra quality of living! I believe the reason why my doctor asked me to stop the daily suppressive therapy and have me go back to the episodic therapy was to see if my immune system would perform any better at dealing with the virus. Unfortunately, its not looking too great since I'm having an OB only 2 weeks after stopping the daily valacyclovir. I've made note of the number of the OBs I had since testing positive in 2019. 2019/2020: monthly outbreaks (obviously the first few months being the worst) 2021/2022: between 6 and 10 outbreaks 2022/2023: not a single major outbreak while on the daily therapy, yay! since August 2023: 1 outbreak after 2 weeks of stopping the meds I'm a tiny little bit upset about the minor progress my body has made dealing with the virus. As far as I am concerned, I am not immunocompromised since I rarely get sick or catch colds aside my OBs that are sometimes accompanied by cold-like symptoms (sore throat and swollen glands, sometimes the odd headache). I will go back to the doctor and speak with him about how to move forward from here. I'm torn between purposefully saying no to meds in order to force my immune system to battle this out, and saying screw it, I only live once and I want a normal and happy life! Re. my wife. She is positive too and has been before me. She rarely has any symptoms and apparently only knew of it since I was diagnosed positive. Too much time has passed and I don't like to get angry about this anymore, so I am very happy that she is basically free from any symptoms which is very important for women during pregnancy. I think a daily suppressive therapy for both of us will be on the table again once we plan to have children. I've heard that there is no evidence of possible negative effects of Valacyclovir on the baby when taken during pregnancy? Thank you for your support and best wishes!

Hi there! So I've never been the one having to disclose to others since I was on the "receiving end" of HSV. Back in the day, I believe I contracted HSV from my wife asymptomatically since she rarely has any symptoms. As you know, its quite hard dealing with contracting the virus without having been informed about it beforehand by your partner. Thus, big thumbs up to you for wanting to disclose to others! I know that for you its not a question about the willingness to disclose, but about when to disclose. Lets say you live in a larger city where the dating scene is quite "anonymous", I think you could give it a go disclosing quite early on during dating, i.e. perhaps even sometime before your first (or first couple of) date(s) which may come in handy "filtering out" those people who are not serious about getting to know you. Again, if you are in a larger place and getting to know new people is not that much of a rarity, you could even try different approaches and timings to disclosing, finding one way you are most comfortable with. Again, definitely do disclose before you find its too late! 😃 If you live in a smaller community and you find that a lot of people know each other, hence you want to avoid the wrong people knowing about your condition, then I would perhaps tend to disclose at a later time when there is at least some level of trust between you and your potential other. The tricky part is, however, try to disclose before you become too emotionally attached to the other person, because this might be recipe for heartbreak. I have faith that you won't be alone forever! Don't worry 💪💪

Hi there! I've posted on here recently also describing the painful sensation I felt with the term "phantom nerve pain". As far as I am concerned, its very common for any herpes virus to cause phantom nerve pain - on a much worse scale, shingles patients complain of nerve pain years after having the illness. As for point 1. I share your pain, I've had HSV since 2019, and the first two years were quite the struggle with what I would recall monthly OBs. I was put on the daily suppressive therapy for one year (I believe it was 2022 until recently) and it helped a lot - in fact, while on the daily therapy, I cannot recall a single bad OB. Dull pain, however, seemed common, especially during periods when I had stress or bad sleep, and I imagine if it were not for the daily medicine, I would have had an OB during that time. I also question my doctor. He asked me to stop the daily therapy and go back to taking valacyclovir only during OBs, and as you can imagine, a month after stopping the daily therapy I had another major OB. Hang in there!

Hi everyone! I would like to ask for some first-hand advice on the implications of using valacyclovir daily (for years) as a suppressive therapy. Some quick background info: Diagnosed positive in 2019. I have been treating OBs with anti-viral medicine (1000mg valacyclovir for anywhere between 3 to 5 days) for the first few years. Last year, and due to the high frequency of OBs (and subsequent deteriorating quality of living), my doctor put me on a daily suppressive therapy (500mg of valacyclovir daily) for one year. My verdict after a year: While the little bastard of a virus is still giving me the odd headache (quite literally!), the daily suppressive therapy has significantly improved my overall well being! About a month ago (so exactly a year after starting the daily suppressive therapy), my doctor recommended me to revert back to my original treatment, which was taking 1000mg of valacyclovir for a number of days at the onset of an OB. While OBs haven't been as bad as they were at the start, I do feel somewhat of a constant sensation of discomfort in my genital area since stopping the meds. Although its probably not the right term to describe the sensation I'm feeling, though its almost as if I am experiencing some kind of phantom nerve pain, or the constant (and slight) feeling of an imminent OB. Obviously, I wouldn't mind living without any of this, hence I am thinking of giving the current routine another month or so before heading back to the doctor and asking him to put me back on the daily suppressive therapy if there isn't any significant improvement. My question is, however, why did he ask me to stop the daily suppressive therapy after a year? Are there any potential issues taking valacyclovir for longer than that (i.e. for several years), or does he want to avoid the virus developing a tolerance for the medicine? I am in my mid thirties, and tbh, I am torn between not wanting to take any daily medicine at all this early in my life, but also appreciating that the meds do help me a lot! Also, my wife and I are planning to have children in the next few years, and we really hope to get this somewhat under control. Thank you so much for your support, and I hope to contribute to this forum with some of the things I've learned in the past couple of years!.