Tina94

There is no reason to be scared of "over dosing" on antivirals. 1000 mg at once is not going to hurt you at all :)

Hi everyone, I've had HSV since november 2015. Was on suppressive meds until October 2016 which was amazing, but went off and the outbreaks suddenly started to come every single month... So until September 2017 I struggled every month with the usual outbreak and I was so devastated. They came out of nowhere and I could not really relate them to anything specific. I am also a member of a Scandinavian support site (I'm from Europe) for people with HSV and I saw a post where a woman told about a Swedish doctor who had helped her with her outbreaks. She was initially at the doctors office for something unrelated but luckily said something about her struggling with HSV2 outbreaks. The doctor told her that he had no cure (of course, we all know..) but that he had known some researchers from America that had found out some really helpfull supplements: Every morning you take a dose of: 1000 mg Lysine 1000 mg C-vitamin 200 mcg Selenium The same dose is taken at night. During outbreaks you can double the dose for 2-3 days and take antivirals. (no more than 2-3 days since the dose is high). The catch is that you have to do this 3 years from your last outbreak, and you should lessen your intake of chocolate and nuts (they reactivate the virus). With the supplements, your outbreaks are suppose to show up less and hurt a lot less, until the virus goes into hiding and you supposedly become outbreak free. After 3 years, the outbreaks should disappear completely. If you get an outbreak after the 3 years, it's back on the supplements for 3 years again until you are outbreak free. So yeah, it's not the easiest "cure" but it's soon worth it! My last real outbreak was in September 2017 and I began taking these supplement in October 2017, so I'm going to do this until September 2020. And I can tell you... I have not a had a single outbreak since I started these supplements! It's been almost THREE MONTHS for me now and I almost feel like a normal person again who does not have to worry about if staying up late will cause and outbreak! I don't know if this can help you but I feel like I need to share this with you guys because it has helped me so much. I honestly did not believe in this at first but I was so desperate for my outbreaks to ease and I had nothing to lose - and these supplements has helped me tremendously! I still have an itch here and the tingling feeling a few times a month for a day or two, but there hasn't been a visible outbreak. When I feel an itch, I double up my dosage of vitamins and take some antivirals, and then that's it. No outbreak develops!!! I have to admit I do eat some chocolate sometimes but I have completely cut nuts out of my diet as much as possible :-) Again, this is not a cure, but if you have nothing to lose - please try this. I hope it helps you guys too and would love to know if anyone is going to try this. I bet that you will feel a difference after a few weeks. I don't know if I will become outbreak free by doing this, but three months without one is a world record for me! I buy my supplements from Ebay since they are less expensive there. So there's no reason not to try this! I have also researched if such high doses are safe to take every day - and you should do this too - but I didn't not find anything that explained that these doses are unsafe. I have had no side effects at all. Any excessive vitamin that the body does not need will be processed out of the body. I almost feel a bit stupid writing this, because it's always someone who knows someone who knows a doctor who told them about a "cure"... But these supplements has really helped me, and if I can help just one of you to lessen your outbreaks too, that's all I can ask for! Let me know what you guys think and if you are going to try this :-) Kind regards Tina

Thanks for the reply @HikingGirl. Acyclovir was such a game changer for me too! No itching, no outbreaks or anything.. I'm just not ready to give up on the idea that my body can fight this virus itself.. At least keep the outbreaks from happening once every month. I can't really find a system that reflects my period. The outbreaks appears before, during, after, so I don't know if it is related to that.. It does make me sad reading that you've had this for 20 years or so and still have outbreaks quite frequently. I'm sorry to hear that.. I hope it gets better for you soon - or that the acyclovir can help you for a long, long time. I do hope that my body will be better at coping the outbreaks as the years go by. Last night I had two pieces of my favourite chocolate, just because I was like f*** this, I will not let it control my life. I think it was kinda because of what you had said: it may get better over time, or not. I do not know this, so why not just live my life and do things that I once did. Life's too short. So thank you for that! My outbreaks aren't even that bad, sometimes it can hurt while I sleep, but I can still walk, run, ride my bike and sit down without even feeling uncomfortable when I have an OB. Anyways thanks for the support - I see that you respond a lot to other people on this forum as well. It is an amazing job you are doing @HikingGirl!

@JoanM I know doctors think that herpes is herpes. But there is a BIG DIFFERENCE between HSV1 and HSV2 in the genital area. Where HSV1 will give maybe 1 outbreak a year (for most people none after the first), HSV2 can (and often will) recur a lot more. HSV1 sheds a lot (!) less than HSV2 since it does not prefer the genitals. So herpes is not just herpes. Yes, the stigma is there even if your daughter "only" has HSV1. But if she does have genital HSV1, I can tell you that she will have far less issues with the virus - maybe no outbreaks ever again.. So it does make a difference. Some people might even say that you won't have to disclose if you have genital HSV1 because transmission rates are extremely low - less than 1% I think (don't remember the exact number). Have another blod IGG test done again in maybe 4-8 weeks. If another outbreak pops up have it swapped asap. If it's HSV1 - she has won the 'herpes lottery'. If it's HSV2 things will be okay in the end! Wish you all the best, Tina

Hi everyone! Just wanna say thanks for this amazing site and all the support. Has helped me a lot! Well I never thought about posting anything myself. I guess my story is a lot like other peoples here.. I've had HSV2 for 1,5 years - got it from an ex boyfriend who did not know he had it (or so he says). I'm only 22. The first year, I went on Acyclovir which was amazing. Only had the first outbreak and nothing else for that year. But I wanted to get off the meds so my body can learn to fight this, so stopped the meds back in september. Since then I've had an outbreak each month! Sometimes only 3 weeks apart...! And even those weeks without a real OB, I often still have itching, tingling etc. Physically my outbreaks aren't that bad, a bit itching and pain and a few paper cuts for 7 days. Never blisters. Still annoying but manageable. Mentally though, I'm having a hard time. I do still wonder if it get's better, sometimes I lose hope. I wish I could just have at least 3 months without anything, like many other with HSV2. Since I stopped the meds I guess I've had maybe 10 outbreaks or so.. I wish I could drink a glass of wine without fearing it will cause an outbreak. I wish I could eat chocolate, stay up late, drink a lot of coffee without that fear in the back of my mind. Wish I could go out with my friends, be busy with all kinds of stuff instead of always having to stay stress free and go home early.. I wish I could just do stuff people my age do. This virus is really controlling my mind and my entire life and I am so sick of it. I could go back on the meds, yes. But I don't want to.. I think I have to "ride it out" and hope that it get's better in a few years maybe. It has to get better right?! I'm jealous of those with GHSV1 (so so jealous of them!), those with oral herpes and those with asymptomatic HSV2 - why is my body so bad at adjusting to this damn virus! It's not fair. Life's just not fair. I'm a smart girl and never slept with many guys, always been careful. Guess herpes does not care about that, ha! I'm pretty sure I'm having an outbreak again right now. Only 3 weeks since my last one was over. I'm not that stressed, I sleep at least 8 hours most nights, never drink a lot of alcohol, eat healthy (mostly), exercise, take vitamins and natural supplements.. Sorry for the rambling... Just had to write it down and share it with someone who might understand what I'm going through. Herpes is always in the back of my mind, lurking. I've accepted it, yes. But learned to live with it, no. Can anyone relate to these feelings, and how do you cope with this? How do you learn to live with the outbreaks and the constant fear that something you do or don't do can cause an outbreak? Tina

Glad to be able to help you! It's a difficult topic to talk to people about because of the stigma. So glad your find your way to this forum :-) I think it's a good idea that your gf went on the daily meds and you guys are using condoms until you know more. May I ask you, she has never ever felt something was wrong down there? Like ongoing yeast infections, UTI's or anything? Herpes is often misdiagnosed, often doctors think it's yeast infection because some people do not get the typical blisters. About oral sex: the risk is literally sooo small that I would not hold myself back. I think it's even less than 1% chance. HSV2 does not thrive in the mouth area so transmission almost *never* happens, so don't hold yourself back on this. About the advantages of being HSV1 positive: If you've never had an outbreak on your genitals, I would be pretty certain to conclude that you have it orally. HSV1 does give some advantages but you can still get HSV2. The advantages of you having that virus would mostly be that IF you got infected with HSV2, your outbreaks would be less severe because your body already knows the HSV1 virus (they are almost identical in their cells/DNA). Other than that, HSV1 will probably not change anything when it comes to the HSV2-transmission, sorry.. 80% of people with HSV2 do not know they have it (like your gf) so I guess there is an 80% chance that you won't show any symptoms. I'm not good with statistics so can't remember the exact numbers, but I think the transmission rates from female to male with meds and condoms is 1%. I think I read somewhere that chances of becoming pregnant while being on birth control is 3% and people don't really care or think about that risk - and the risk of transmission of HSV2 from female to male is even lower than that. Just as a perspective :-) Hope this goes well, and the best thing I can advise you to do is just to keep communicating with your gf and support her. She probably feels even more confused than you and scared that this might change things between you. And I would also advise you (well your gf) to stay on the meds maybe for a year to see if your relationship is still going strong and you know more about the virus and transmission etc. Keep us updated! All the best, Tina

I get the small paper cuts too! Mine never develop into real blisters or ooze or anything. When I went to my doctor to have them swapped (not my primary OB), I remember she said that it did not look like a typical herpes OB and she was not sure. I never get real blisters when I have an OB, just the fissures/paper cuts which hurt a lot too, but only if i touch it. So I guess we might be lucky that it's "only" small paper cuts that we get even though it's still annoying and hurts. As your doctor said, I agree that this is just your symptoms. All the best, Tina

I am no doctor and from a medical perspective anti-depressant are effective and can help people a lot. From my perspective I think there are better ways to fight a depression; therapy. Cognitive therapy, psychotherapy etc. There are a lot of side effects (even suicide!) when you take the anti-depressants and it can be really tough to get off them once you've been on them. When it comes to mental health, I think we have to be skeptical when we listen to the medical industry. Remember that its a billion dollar industry.. I'm very sorry to hear that you struggle so much with HSV.. 500x 3 times a day sounds like a reasonable dose that should help you? Have you tried Valtrex? Maybe that would work for you. Seems like the meds you are on now are not really helping you. I think you should contact your doctor and ask for other medication, maybe Valtrex as I mentioned. Wish you all the best, Tina

IGG is usually very correct and a 5.0 is a positive result. So I would guess that she probably has HSV2. What was your IGG result for HSV2? Both of your HSV1 results suggests that you've had that infection for a long time since the numbers are high. Some people have HSV2 but never show symptoms so they don't even know they have it. Could be the case with your gf. Even if she ever shows symptoms and you're still negative, you can still have a great sex life together. With condoms and meds the risk of transmission is so small! If you like her (maybe already love her?) I would not think that herpes should be such a big deal for you guys. You are still you and she's still who she is and was before all of this. 1 in 5 women has this and 1 in 8 men - that's a lot you know.. Herpes is a lot more common than diabetes and asthma even though you hear a lot more about other diseases. I've heard about couples where one has herpes and the other does not, and still after 20 years it stays that way.. You just never know. Life is risky. It will always be. If you leave your gf because of this, you are maybe a lot more at risk - you might meet another girl who does NOT know she has it and does not know how to protect you with meds and condoms. 1 in 5 women, remember that. If I were you I would get another IGG, both of you. Just to see if the results are still the same. If they are, you will know that your gf has herpes and maybe you have it too or not, and then you can go from there. If you both have it there's really nothing to worry about since you can't spread it back and forth. Good luck and keep us updated! All the best, Tina

Never ever have sex if you have an active blister - that's when its most contagious! Even if you are on the meds and condoms are used. No sex when there's an active blister or tingling. Same goes for oral sex. When you are outbreak free you can of course have sex and oral sex (with meds and condoms or not is up to your and your bf). The risk of getting HSV2 on the mouth is so small that I would never worry about that (I think it's less than 1% chance of that happening). Even IF it happened to your bf (which will not happen) he would maybe get one OB on the mouth and never another because HSV2 does not thrive in the mouth. Be safe and take care. Remember to listen to your body. Wish you all the best, Tina

The risk of that is very veryyy low so I would not worry about that! Getting HSV2 genitally is still a risk though even if you have genital HSV1 or oral HSV1 so be safe!

Hi SS316, I was on suppressive for 5 months which was amazing, had no OB's at all. But I didn't like being on it, just the idea that I "needed" the medication and I really wanted to let my body figure this virus out on it's own. So now I've been off the medication for about 8 months and honestly... I've had like 7 OB's. Small ones but still terrible - mostly psychologically though. I do take medication when there's an OB just because it shortens it a lot! I do believe that your body is better off just learning how to deal with this on it's own. I do not know if it's true that the body "gets used" to the meds or "gets lazy" and then can't fight off the virus itself. Might be true. I didn't get an OB after I stopped the meds because I went off slowly, from 2 pills a day to one pill a day for two weeks, to one pill every second day for another week and so on.. My bf has genital herpes too so I don't have to worry about transmission which helps my situation a lot. If you are having sex with someone who is -H, you should probably talk to him about transmission with/without meds and condoms. If you don't plan on having sex anytime soon I would go off the meds just to let your body work it out. Hope this helps. Wish you all the best, Tina

Hope you are doing better @Lowkeytee! And yes if anything pops up again go get it swapped just to be sure. Yeast infections can have the same symptoms as herpes so you never know.

I don't think you have passed this on, so do not worry. But of course learn from this scare and remember to not touch your genitals/sores if you have an active OB.

@Turquoise621 Exatcly, I feel the same way. @Gimmehope how did it go? Did you have a talk with your bf about not using condoms, the risks etc?

Valtrex is usually a bit more expensive, I've heard. I've tried acyclovir 400 mg 2 times a day as Katydid says, and I had no OB's while I took them. I would try out acyclovir and if they don't seem effective enough try Valtrex then.

May I ask if your depression came as a part of your struggles with HSV? Or are they unrelated? I study psychology and would never advise anyone to go on depression medication. If you are feeling depressed because of your HSV status I think you should go on suppressive meds to keep the OB's at bay until you are feeling better mentally. Wish you all the best!

I am so sorry you are going through this. It can take a while for the body to get use to HSV (no matter which type). Usually the first year is always the worst!! I have HSV2 and have never had a cold sore above my waist, but I've been on suppressive medication which has helped my outbreaks a lot! You should go to the doctor and hear about the possibilities. Be demanding and do your homework beforehand since most doctors do not think HSV is a big thing. I took Acyclovir, 400 mg two times a day. I had 0 OB's when I was on the meds. I've just recently gotten off them because I want my body to fight this naturally, but when I was really down about my HSV status I took them to keep the OB's away until I was feeling a bit better mentally. Hope this may help you! Remember that it will get better. *Most* people with HSV1 get's very few OB's each year and your body is still coping with this new virus. All the best, Tina

If you still have sores go get them swabbed! Blood work is often useless because most people have HSV1. In a few weeks get another one done and see if HSV2 pops up. It takes a while before it does that.

Too many doctors are misinformed and just think of herpes as nothing. It is big deal for some people which should be acknowledged. I asked my doctor to put me on suppressive therapy for 6 months but I realized I wanted my body to figure it out on its own. So I only take the meds if I feel an OB coming. In the beginning I had a timer on my phone that reminded me of when to take the pills. Most doctors will prescribe 200 mg x 5 times a day for 5 days for an OB. If you can, get your doctor to prescribe at least 400 mg pills. Having to remember those 5 pills a day is annoying. I found a study that described how maximizing your dose for the first 2-3 of your outbreak to something like 2000mg pr day was a lot more effective than doing the 5 day course. If I feel an OB coming I will take 400 mg as soon as possible and then a few times during the day. I do this for the next 2 or 3 days and have found out that this is really effective! As for the cream; it is not really effective on genital sores and it is not recommended to use. The tablets are a lot better so stick to them. And yes, first OB is absolutely the worst!! After a while they will get a lot easier to handle and not painful. My OB's mostly just itch and are sore and otherwise my body is fine. I can still ride my bicycle as I do everyday to work. It will get better, I promise! I think you should figure out which type she has. 50% of genital HSV is actually HSV1 which (for most) is a whole different story than HSV2. All the best, Tina

Herpes is a really shitty thing, but you know what? Shitty things happen. To all of us one way or another. It is going to be okay. As for your questions @Chey. Lysine does not have any documented effects on herpes but some claim it has helped them a lot. I guess you could try it out and see if it changes anything. For some, sex is a trigger so they will have an OB if it's too rough. I would wait a few days/weeks after the initial OB before I engaged in anything sexually. You might still be a bit sore. I personally haven't really found any triggers other than too much stress and not enough sleep. Hormones seems to effect me too, I had to change birth control so I took something with less hormones in it. Great to heat that you try to excersise and eat healthy. That's a great first step. Remember that the first year or two are usually the worst - meaning that *most* people after that time won't experience that many OB's pr year. I lived for a lot of months with the fear of having another OB. I didn't go out with my friends because I was so scared that alcohol or unhealthy food would bring on an OB. Or loss of sleep. Which means that I just stayed home and went early to sleep. I wasn't depressed but I was very down and so scared of those stupid OB's. Then the day came where I had another OB. And you know what? My fear of getting the OB was way worse and controlling than actually having the OB itself. It was WAY (!!!!!!) easier to deal with than the first. I couldn't feel it unless I touched it and there was nothing to see. So just want to tell you this because I hope that HSV won't hold you back from ANYTHING. As I said, shitty things happen - also to good people - but life still goes on. Are you still together with the person who gave this to you? All the best, Tina

Thanks for sharing your wisdom and thoughts @HikingGirl. I can really identify with everything you write.

Glad to hear that you've come to this conclusion. I feel inspired by your words! As you say "it's just some shitty thing that happened". So true! Shit happens, life happens.. Life goes on.

Definitely find out which type she has. It does make a difference. Genital HSV1 tends to be milder and sheds a lot less - meaning that genital hsv is not that easy to transmit genital to genital. How many outbreaks she has depends on a lot of things. Doctors are usually not very informed about this virus so bear that in mind. I would most certainly say that most people does not have to deal with this monthly! That is a minority of people who might be dealing with other issues when it comes to their health. For most with HSV2 it's abou 5-6 OB's pr year which should lessen as time goes on and the body get's use to the virus. I always have a "stash" of Acyclovir at home and in my wallet if I feel an OB coming. She needs to take the meds as soon as she feels anything, that can lessen the outbreak a lot. There is lots of great info on this forum so you might want to take a look - with your daughter - on the different categories on here. Just let me assure that it is all going to be okay. And great for your daughter that she has a mother who cares so much and wants to help her. Great that she felt she could tell you as well. Remember that 1 in 5 has this virus, and while it's sad and devastating at first, it will get better! Wish you all the best.

@TaoOfHealing - SO glad to hear that you are able to look back and realize that you might have been safer with the girl who disclosed her status to you! Many people do not realize this.. I would not blame your ex girlfriend as she probably didn't even know she had HSV2 (up to like 80% does not know they have it!). Remember that knowledge is power and there is still a normal life ahead for you and everyone else with HSV.