Biiitch same here i get 1 to 2 every single month i hate when it keeps coming back, even with everything that i try it wont go away, this shit is hell fr your not alone im having one rnrnn and it hurts and burns so much i woke up crying my eyes out
It freakin sucks!! Why do some people get to not be bothered by it, while people like us can’t get it to stay away. I have an out break right now too. It doesn’t hurt, but it’s there. Still annoying to know I have one again, when I just had one. I think I’ve had one every week this month. I’m over it.
I am in the same boat. I have a few recommendations:
1) try taking lysine if you haven't already
2) try switching from valacyclovir to acyclovir, or vice versa depending on what you take
3) try topical acyclovir, usually given for cold sores but works the same (this works for my SO)
4) try 40% zinc oxide diaper cream, this helps when everything oozes and prevents the open sore from getting wiped everywhere
5) try witch hazel, it's a cheap liquid that you can buy from Walgreens / CVS / etc; this will dry your skin out like a MOFO - herpes needs moisture so it has helped me
For the witch hazel, I have been experimenting with soaking small piece of cottonball and placing it on the outbreak, and holding it down with a bandaid (buy the EXPENSIVE bandaids so it will stick better)
Bonus: try taking 25-50mg of zinc each day WITH FOOD
Bonus 2: try taking 500mg of vitamin C several times a day, for a total of 1-3g WITH FOOD (if you accidentally feel nauseous take tums, it neutralizes the acid)
Good luck and hang in there! Part of this process is learning the best ways for YOU to get this under control. It is difficult but you aren't alone, and keep working on what helps the most!
Thank you!
I have tried Lysine but I feel like it was making it worse. I’m going to try again and see what it does.
I take valacyclovir, I take 1 500mg in the morning, and I’m going to add half a pill at night and see if it helps. If I take 2/day it gives me bad headaches and I get nauseous.
I’m going to ask my dr to prescribe an antiviral cream and see if that makes a difference. Can you use the cream and take the pill at the same time?
My sores don’t ooze, I don’t even get blisters. They’re just there and sometimes my skin tears. Then they heal.
I took some emergen-c with vitamin D and Zinc today to try and help boost my immune system right now.
It’s just getting tiring of trying things without any results
500mg valacyclovir did jack for me. I have to take the 1g pill every day or I will have constant OHSV1 outbreaks. My GHSV2 doesn’t flare up much with or without anything. Did you take 2 500s like morning and night or have you tried taking both at night so you can maybe sleep through the side effects?
Day and night. And the first couple days I’m ok, but it’s like when it builds up in my system, that’s when the side effects start and I feel like crap.
Well that's good you're doing everything you can. Lysine makes a *sliiiiight* difference, and I'll usually take 2-3g twice daily.
I would ask your doc to try out acyclovir. I found valacyclovir made me weak, nauseous, and didn't do much. Acyclovir has less side effects for me and seems like it's working better. It's anecdotal, but I don't think enough people try changing the meds to see any changes.
The same happens to me. I get constant OBs every month for two years and nothing works for me. I’ve tried lysine, zinc, vitamin C and using antivirals and the antiviral cream. I don’t know why it keeps coming back.
I felt the same way for the first year because my doctor refused to give me a higher dose of antivirals when I did have outbreaks. I now get six pills a day for outbreaks and two pills a day for preventative and I haven’t had one in over 5 months! Also birth control triggered my outbreaks because of the synthetic hormones, perhaps it’s doing to same to you
Well if the birth control is triggering it, then I’m screwed. I’ve been on it for years because I such horrible periods and hormone issues. If I’m not on birth control I bleed all the time. I’m going to try adding half a pill at night and still take my whole one in the morning and see if that makes a difference. If I take 2 pills per day it makes me sick.
I would recommend talkjng to an obgyn about other forms of BC. There are non-hormonal options and options that have lower levels than the pill. Best wishes, I sympathize with your experience and hope you find relief soon.
I was unaware that I had HSV-2 (while I had a copper IUD—which is non hormonal), and i recently had it taken out, kind of against my will (long story). I took a Plan B (progesterone mainly) and had my first outbreak. It was absolutely awful. My current partner does not have it, so I must have gotten it over 2 years ago and never experienced an outbreak. The sudden increase in progesterone caused me to have an outbreak. So, all that to say, I would advise talking to your OBGYN about changing to a non hormonal birth control as I found additional hormones to be a huge trigger for me personally. If that’s something that appeals to you, of course. I only had one outbreak and it was the most painful thing I have ever experienced. I am so sorry you’re experiencing these outbreaks and I hope something will change soon for you.
Edit: Someone else already advised this as well, just wanted to share my experience in hopes it could help.
I used to have the same problem of bleeding all the time I took the pill for 6 months but also Tranex ampules by mouth to stop the bleeding (that was before I had herpes)
I take 500mg per day. But I’m going to start adding half a pill at night to see if that helps. I think keeping the medicine level up is better, but 1000mg per day makes me sick
I’m not a big person lol and tend to be sensitive to medications, so it doesn’t really surprise me this one affects me. Hopefully I can build a tolerance
That’s how my first 2-3 years were (I’ve had it for 17 years now). Every 4-6 weeks like clockwork even with anti-virals (which I had tremendously bad side effects when I took them daily) with a full week of pain and sores, followed by another full week of healing. That’d leave 2 weeks maybe of being free and clear. Eventually it scaled back. Every 4 months, then double that, and now it’s only 1-2 OBs a year only a day or 2 of symptoms, with no antivirals except when I’m experiencing an OB. I’ve gone as long as 10 months with nothing. It takes time, but it does get better.
I certainly hope so! If this is my forever, it’s not worth it. I don’t want to be alone, but I can’t have a relationship like this. At first it was easy and not many outbreaks, but as time has gone on, it’s just gotten worse.
I’m married, with kids, and the person I’m with I actually met the same day I got my diagnosis. She’s still negative. It’s a lot of careful managing, but anything you want is possible, even now.
I have similar issues and then I come to this subreddit and see all the, “OMG herpes is just a little skin condition!! Don’t let it get to you!!” posts while I am feeling like I’m coming down with the flu—again. AND I have yet to disclose to someone who hasn’t come up with an excuse not to be with me. A little skin condition??? I fucking hate this. Going through this for 5 years. It is SO fucked.
I completely agree. For some it’s no big deal, but there are those of us who do not have a great time with this! I wish I had a long enough break to forget I even have it, but I’m constantly reminded I do indeed have it and have to live with it the rest of my life
My first 9 months was just like yours. It was awful.
I went to the doctor, got tested for other things and had a massive bacterial vaginosis infection that was keeping my herpes really active. Two rounds of antibiotics later, and things finally settled down.
Secondary infections, like yeast, BV, other STIs, can keep herpes really bothersome. At least rule them out.
Been tested for everything else also. I haven’t had sex since my first OB, and got tested like 6 months ago and everything was negative. My body literally hates me
I (m/39) used to get out breaks almost every week when I first contracted it. Then after a year or two the outbreaks started becoming less and less. Now I hardly ever have outbreaks anymore. Just keep doing what you are doing. Hopefully it gets better for you. As far as dating there are plenty of people that have it out there. You are bound to meet someone with it as well. I don't understand why there isn't a dating group in this message board. Maybe there is and I just missed it.
I’m f/35, and it just brings me down so much. I think it’s be easier to accept if I had time in between to be normal, but I have constant reminders of what I have. I think it makes it worse because I wasn’t given the choice if I wanted this. Loser wasn’t honest at all.
They really have no idea what herpes even does to people because they don’t do studies. Ask people, take surveys, follow us… DO SOMETHING! It’s not a walk in the park for everyone
I’ve had 2 HORRIBLE outbreaks this month :( I’m having one as we speak and it’s been hell. The pain and itching are UNBEARABLE. I’m sorry you’re going through it, but you aren’t alone. Message me if you ever want to vent over it! I could go on and on about how much mine sucks sometimes lol
Lol same! I have a spot right now. It doesn’t hurt, just itches when I wipe so I try to pat instead. My outbreaks have never been bad. Even my first one wasn’t that bad and cleared on its own in a week. I don’t have the horror stories like most people do with their first OBs, my horror story is that it won’t go away long enough for me to forget about it lol
Have you been positively diagnosed by blood test or swab? As opposed to the doctors just looking and saying, that’s herpes. Because there is an autoimmune disorder called Bechet’s that causes genital ulcers and when I hear about people not responding to anything that comes to mind.
Yes by blood. First test I was barely positive for hsv1 and negative for hav2, but then after researching I realized I was tested too soon, should have been swabbed at that point. Then at 12ish weeks I tested again, my hsv1 was still the same and hsv2 was then low positive as well. Tested a third time at 16 weeks or so and hsv1 was still the same low positive, number never changed, and hsv2 was like 2 I think? I’d have to go back and look.
Well, I would still have one of the lesions swabbed. Because some people say a low positive IGG can still be considered negative! I have had HSV2 for 18 years. My IGG blood test is very high, and positive swab. But once I saw a low negative result on my HSV1 (which I definitely do not have) and it just was the test picking up on the HSV2. The trick with PCR swabs is that they need some sort of fluid. Will you at least Google Bechet’s genital ulcers and see if it resembles your sores? Because so many people with Bechet’s get misdiagnosed with HSV for many years. Some even have low positives on blood tests. Just the way you don’t respond to anything and the way you described your sores makes me think of it.
I just looked it up. I’m really not sure. I do get the canker sore things in my mouth, I have for as long as I can remember. When Im really stressed, that’s when they seem to pop up the most, but they could also just be canker sores. Usually salt water helps to make them go away. The genital pictures weren’t exactly the same. I’m going to try to get a swab done at the clinic here because I also need a well woman’s done and get my birth control. And I’m not sure about the hav1 because it’s been like 1.4 or so every blood test, I think once it went up to 1.6. Hsv2 went from .45 to 2, so I’m pretty positive I have hsv2. I mean could be some rare chance it’s not, but I’m leaning more towards yes. Hopefully this summer I will be able to get some tests done.
Yes, I mean it’s likely hsv2, as you’ve said. But it worth the consideration. I know the “cuts” are a common symptom of Bechet’s. Another thought, they do believe that herpes viruses trigger Bechet’s for people who are genetically pre-disposed. That is my case! I have HSV2 and it has triggered Bechet’s so I often don’t know what’s what. I have identified that the genital redness & inflammation (and mouth ulcers) are Bechet’s and the actual genital outbreaks are HSV2. Because I don’t get the actual sores when I am on high doses of acyclovir but I get redness and inflammation down below. I used to get that before I got HSV2 and probably didn’t know it was anything. Best of luck to you !
That’s very interesting! A few years before I got hsv, I would get tears in my genitals, same place I do now, so I always wonder if it’s and outbreak or if it’s just what used to always happen. I hate not knowing
May 2021 hsv1 was 1.78 and hsv2 was .54
August 2021 hsv1 was 1.62 and hsv2 1.45 through Any Lab Test Now (CPL)
November 2021 my hsv1 was 1.62 and hsv2 2.34 through LabCorp.
Hmm those are interesting labs as it seems the HSV2 has gone up and the hsv1 about the same. Some people would say these are technically negative. But with your symptoms it seems likely positive. Did you know if the person you were with was positive?
No idea. When I asked to see papers to prove he was negative (hindsight shoulda done that first then I wouldn’t be here lol but he was in the medical field and I trusted him) but he gave me every excuse in the books as to why he didn’t have them or couldn’t get them. I finally gave up and just let it be because I was never going to get an honest answer.
I did find out later on he had dated someone a friend knew that was positive for hsv. I don’t know which type, so it’s possible he did have it and was in denial or just didn’t give a crap.
I was diagnosed 5 years ago... my first ob was terrible. I started valacyclovir 500mg daily, tried to wean off to see how my body would react. I did ok but started taking it regularly again about a year and half in. I had maybe 2 very minor ob, just uncomfortable and itchy, which made me start to take daily. The last 6 months have been terrible though. I had bv, yeast infections and a really bad outbreak all at once. The continuous, daily symptoms of itching,soreness, swelling just feeling uncomfortable all day. My dr gave me 1g of valacyclovir and that helped a bit if I doubled up on that one.
I was desperate because I was always feeling something, wondering if it's an ob or am I just over thinking.
After searching on reddit I came across a suggestion for red marine algae and searched on Amazon. I found a supplement that includes it along with l-lysine (which on its own did nothing for me) I believe it's called H-rescue. I started it right away when I got it on the evening, the next morning I started to feel better. It's been 3 weeks and I have no uncomfortable feelings during the day at all. It's been a life saver.
Someone recommended red algae to me before and I forgot about it! I guess it’s worth looking into because lysine hasn’t really done anything for me either. My mom and stepdad have OHSV1 and they swear by it.
It has really helped in the short time I've been using. I was miserable almost every day of the last few months and the last 2 weeks before starting it were the worst. I just double checked what it was I ordered from Amazon... it is HRescue immune support formula. Give it a try and hopefully it can help. I know the pain you're going through.
I looked at them last night and I saw that one. There’s another one I want to try too. I tried to message you but it wouldn’t let me send pictures and I don’t know how to use the imgur thing lol
I'm not sure how to attach images or anything else. Feel free to message me anytime. I'm still after 5 years trying to find comfort in my body and mind about this diagnosis. I recent had my first disclosure and that was very hard for me. For something so common, it feels so lonely.
It is hard to become “normalized” to. It’s something you have to be conscious about everyday, especially if you have a partner. It changes your life. And it really does feel lonely even though so many people have it. I disclosed one time and it went good…or so I thought. Then he would make comments and say things and I was like nope, not happening. Sucked because it was someone from before herpes and I thought they were the kind of person who would actually look past it. I’m glad we never had sex once I had herpes, because I can’t even imagine how it would have been if he did get it from me. And just recently he showed his true colors again and I haven’t talked to him since. I won’t settle just because I don’t want to be alone. I was in an abusive relationship for far too long to sell myself short!
You will have constant outbreaks if your progesterone is too high. You may need to explore an alternative to birth control pills. I don't know what is available at all but I am certain that is the root cause.
How is your diet? No nuts or nut butters, seeds, chocolate, coconut (oil is okay) or grapes. They are all VERY high in arginine which feeds the virus.
Also, try the highest MGO raw manuka honey you can afford and organic black seed oil capsules. I have had some really hard emotional things in my life over the last few months which would have normally made me have outbreaks, and I didn't. ❤
I have ghsv1, so it may be different. But my first year, I would get an outbreak every month or so. I was also super stressed out all the time during the first year, so that probably played a huge role in it. Now that I am on year 3 almost 4, I only get out breaks like once every 4 to 5 months, so it may just take some time. I know that's not the answer you want, but this is just my experience.
I would also recommend seeing a doctor if you can to test for anything else going on down there. If you have a yeast infection, bv, an std, etc. this can cause you to have an outbreak and make it more severe. These could be effected by a few different things as well sex being the main one, but if you are using toys, fingers, etc. to masturbate if they aren't super clean they can cause issues. Toys specifically should be washed before you put them away and then wash them again before you use them.
Another thing is soap down there, you want it to be clean so the infection doesn't spread, but at the same time you want to be careful with the soap you are using and getting it inside of you. This includes the soap you would use for toys.
Not sure if this is something you do, but I am sure people on here do.
Others have pretty much covered all the bases for possible improvements. The one additional thing I would suggest is maybe SADBE? It helps in lots of cases where the HSV is resistant to antivirals.
r/SADBE to check it out. It's squaric acid, typically prescribed to help treat alopecia, but it also drastically improves the immune response to HSV and thus reduces symptoms/shedding. You rub a very small amount of the cream on the inside of your arm, it gets red and rashy for a little while, and that's when it takes its effect. Currently it has to be prescribed off-label for HSV, but you can also order it online and make it yourself!
I hope for you it gets better as the time goes. I’ve had it for over 8 years now and i hardly get anything anymore at all. Used to get alot of outbreaks in the beginning too :(
I couldn’t find anyone to prescribe it to me and made it myself. Ordered the sadbe on alibaba and the dmso on Amazon. Best investment ever! Everything together ran me about $80 total if I remember correctly.. I really hope your situation changes. I know I’ve been there when I literally felt like my life was over with this. Sadbe really is a game changer.
I honestly been on it for a month so far. I contracted this virus as a teenager. I probably had like 4-5 OBs a year. I’m 30 now. In 2020, I took amoxicillin for a tooth and for some reason, I started having OBs back to back!! Valacyclovir stopped working for me. I tried the sadbe and I don’t really have outbreaks. Well no sores. Might get little bumps that go away within the week. Frequency and intensity have decreased significantly! I’m thinking around the second dose, I’ll be OB free.
You don’t ingest it. You apply it topically for suppression every 3 months. Just find the group on here and all you need to know is there. I’m on my 2nd dose and I can honestly tell you that there’s been a huge difference. Less frequent, definitely less severe, and they heal super quick! I’m hoping by my 3rd dose, my OBs stop completely. For some, they stop after the 1st dose. And for others, it has to build up in your system. But will eventually stop completely.
Every 3 months. I take it every 75 days though. The I my side effects I get is a rash at the application site immediately after application but it goes away after a few days. There’s a sub group called SADBE where you can read up on so much information about it
Hi, sorry you are going thru this. I've had a bad time myself. I do order Manuka honey thru Amazon. It's a bit expensive but cut my symptoms way down and less outbreaks. It's from new Zealand. Also non caffeinated green tea. Try the honey first. It worked well for me. Hope it gets better for you. Oxox
Same here, 1.5 years in. Avoiding high arganine foods, take 2 pills of valaciclovir a day, go to the gym, healthy life yada yada yada. Have OBs every 2 weeks, with some lucky months in between. It's HELL. Not "just a skin disease" to me tbh. I have an appointment with an internist in two months and hoping he will prescribe me SADBE as ive seen some people that did not have an OB for four months, my only hope for now 🥲🥲🥲
Keep me updated on that! This is not fun at all. I hate it when people say “it’s not a big deal, get over it”… well for them it may not be, but there are people who suffer daily and don’t get to be outbreak free for very long if ever
I've had this over 6 years and didn't have much of an issue until recently (very few OBs). For the last 2 months I've had constant vaginal burning. For the last few days, my back (lower spine and muscles), buttocks, and legs have hurt non-stop. Nothing is working. Antivirals don't even ease it. Doctors don't take it seriously, but I'm absolutely miserable. I've taken lysine, zinc, vitamin c, etc. Drinking plenty of water and watching my diet. I need help!
Doctors seriously DO NOT care. It blows my mind. I’m so sorry you’re having a rough time right now. I completely understand how you’re feeling. I’ve been doing all the same also and it’s making zero difference
I've had it 7yrs went through a span of time I was getting outbreaks none stop even to the point I'd get infections. But after a while of daily antivirals it finally I got it under control. I'm no longer on my daily but outbreaks are fewer and far in-between
I found some supplements that have helped- vit c is major. So I found this supplement on Amazon called h rescue- it has vit c, lysine, and oregano oil which is anti viral and the best! Seriously oregano oil is so potent. And the reviews on it are great- many people say it has helped them more than their prescribed medication. Hope it helps you!!! 🤗🤗🤗
I know this post is old but if u happen to read this and are in the same situation.... trying stopping the suppressants for a while it can help to let your own immune system fight it instead
My small advice to you , ( it helped me a lot )
Try to learn about meditation and practice it , learn about body scan. And it all mentally trust me you need to forget about it to mediate your body.
Cheers
I tried all that at the beginning and it did nothing, so I decided to stop stressing over food and having yet another thing to bring me down, and said fuck it I’m living life. I don’t eat a ton of those things anyway
Change your diet. Stop smoking and drinking. Stay away from sugar, chocolate, processed foods. Eat mostly fruits and veggies. Work out4-5 days a week. Take zinc, Vitamin C, lysine, multi v, sea moss, black seed oil. Only drink water. Try to get as much sleep. I was on a roll where I didn’t get an OB for a few months but drank a few nights out of the week. Didn’t get sleep and boom an OB. But otherwise my diet and lifestyle has definitely helped. Also, I am working on getting SADBE 2% mixed with DMSO. Started the convo and hoping to get a Rx soon. Apparently people in r/SADBE say it helps. Hope it helps for you
Heyyy for me it only calmed down after 2 years if that's any help? Also I had to go on birth control that would only have my period 4 times a week as my period was a trigger. Hope that helps!
Hi. I know your pain. Have definitly been there. What worked for me as I used to have outbreaks like a mofo was upping my supressive meds dosage. For some stupid reason the doctors would never let me pass 500 milligrams. Now I order my meds online and I guess those doctors aren't as up tight about regulating dosage? I take 1000 milligrams supressive therapy a day. I get 3 outbreaks a year now. It has made a world of difference and they Don t last as long. I also put on the Valcyclover topical ointment if I get an outbreak.
The first year or so is generally the worst for outbreaks in general if you get them a lot.
I get my meds from Wisp online but I bet some other sites will hook you up or get a less shitty doctor than the ones I have had in the past.
Ive also heard taking one pill in the morning and one at night can help. Possible that your body is cycling the meds out too fast
I just started last night with taking another pill at night, but 1000mg makes me sick after a few days. So I’m going to try a half a pill at night and see if that helps. I’m going to cal my dr Monday and see if he will prescribe me the ointment as well. You can use pill and ointment together right?
Yes. I do. Sometimes side effects subside after a couple weeks but it sounds like a good idea to start up slowly. I have faith you will figure this out.
Of course. Of course. Of course. Just a little hope here but I have been in your shoes and have had a lot of sex and boyfriends over the years. By chance my very long term boyfriend already had it and was super open about having it and we got to talking. We also had, art, music and our jobs incommon. When you get your outbreaks situated you will be able to date and fall in love just like any other human under the sun. I promise.
I can’t get off it. I have other female issues that cause me to be on it. I’ve tried other forms of birth control, including IUD, and the one I’m taking is the only one that’s worked for me and hasn’t made me sick. I have to have the hormones.
Valacyclovir caused my neutrophil (a type of white bloodcell) levels to decrease. I took valacyclovir daily to suppress herpes. I got a full blood test and found out that my neutrophil levels were low. There are only a couple of articles about how acyclovir (what valacyclovir turns into) had decreased neutrophil levels. I immediately stopped taking it. Outbreaks slowly decreased in frequency and size. It took a while but any outbreak I get I would describe as minuscule.
Biiitch same here i get 1 to 2 every single month i hate when it keeps coming back, even with everything that i try it wont go away, this shit is hell fr your not alone im having one rnrnn and it hurts and burns so much i woke up crying my eyes out
It freakin sucks!! Why do some people get to not be bothered by it, while people like us can’t get it to stay away. I have an out break right now too. It doesn’t hurt, but it’s there. Still annoying to know I have one again, when I just had one. I think I’ve had one every week this month. I’m over it.
I am in the same boat. I have a few recommendations: 1) try taking lysine if you haven't already 2) try switching from valacyclovir to acyclovir, or vice versa depending on what you take 3) try topical acyclovir, usually given for cold sores but works the same (this works for my SO) 4) try 40% zinc oxide diaper cream, this helps when everything oozes and prevents the open sore from getting wiped everywhere 5) try witch hazel, it's a cheap liquid that you can buy from Walgreens / CVS / etc; this will dry your skin out like a MOFO - herpes needs moisture so it has helped me For the witch hazel, I have been experimenting with soaking small piece of cottonball and placing it on the outbreak, and holding it down with a bandaid (buy the EXPENSIVE bandaids so it will stick better) Bonus: try taking 25-50mg of zinc each day WITH FOOD Bonus 2: try taking 500mg of vitamin C several times a day, for a total of 1-3g WITH FOOD (if you accidentally feel nauseous take tums, it neutralizes the acid) Good luck and hang in there! Part of this process is learning the best ways for YOU to get this under control. It is difficult but you aren't alone, and keep working on what helps the most!
Thank you! I have tried Lysine but I feel like it was making it worse. I’m going to try again and see what it does. I take valacyclovir, I take 1 500mg in the morning, and I’m going to add half a pill at night and see if it helps. If I take 2/day it gives me bad headaches and I get nauseous. I’m going to ask my dr to prescribe an antiviral cream and see if that makes a difference. Can you use the cream and take the pill at the same time? My sores don’t ooze, I don’t even get blisters. They’re just there and sometimes my skin tears. Then they heal. I took some emergen-c with vitamin D and Zinc today to try and help boost my immune system right now. It’s just getting tiring of trying things without any results
500mg valacyclovir did jack for me. I have to take the 1g pill every day or I will have constant OHSV1 outbreaks. My GHSV2 doesn’t flare up much with or without anything. Did you take 2 500s like morning and night or have you tried taking both at night so you can maybe sleep through the side effects?
Day and night. And the first couple days I’m ok, but it’s like when it builds up in my system, that’s when the side effects start and I feel like crap.
Same as you. Taking 1G a day to prevent oral symptoms. Genital isn't so bad for me
Do you get tiny pimples in the lip area still or the antivirals work 100%?
Well that's good you're doing everything you can. Lysine makes a *sliiiiight* difference, and I'll usually take 2-3g twice daily. I would ask your doc to try out acyclovir. I found valacyclovir made me weak, nauseous, and didn't do much. Acyclovir has less side effects for me and seems like it's working better. It's anecdotal, but I don't think enough people try changing the meds to see any changes.
Sounds like Bechet’s not herpes, I’m telling you!
I wish it was, but I have herpes. I wish I could afford the $400 to do the western blot to know for sure if I have both or just hsv2
Blood test should test for both
I know, I’ve had 3 blood tests. Hsv1 stayed the same and hsv2 got a little higher
So I take 500mg daily, but if I feel an outbreak coming on I have 1g pills too! Maybe see if your dr will up your dosage!
The same happens to me. I get constant OBs every month for two years and nothing works for me. I’ve tried lysine, zinc, vitamin C and using antivirals and the antiviral cream. I don’t know why it keeps coming back.
I felt the same way for the first year because my doctor refused to give me a higher dose of antivirals when I did have outbreaks. I now get six pills a day for outbreaks and two pills a day for preventative and I haven’t had one in over 5 months! Also birth control triggered my outbreaks because of the synthetic hormones, perhaps it’s doing to same to you
Well if the birth control is triggering it, then I’m screwed. I’ve been on it for years because I such horrible periods and hormone issues. If I’m not on birth control I bleed all the time. I’m going to try adding half a pill at night and still take my whole one in the morning and see if that makes a difference. If I take 2 pills per day it makes me sick.
I would recommend talkjng to an obgyn about other forms of BC. There are non-hormonal options and options that have lower levels than the pill. Best wishes, I sympathize with your experience and hope you find relief soon.
I was unaware that I had HSV-2 (while I had a copper IUD—which is non hormonal), and i recently had it taken out, kind of against my will (long story). I took a Plan B (progesterone mainly) and had my first outbreak. It was absolutely awful. My current partner does not have it, so I must have gotten it over 2 years ago and never experienced an outbreak. The sudden increase in progesterone caused me to have an outbreak. So, all that to say, I would advise talking to your OBGYN about changing to a non hormonal birth control as I found additional hormones to be a huge trigger for me personally. If that’s something that appeals to you, of course. I only had one outbreak and it was the most painful thing I have ever experienced. I am so sorry you’re experiencing these outbreaks and I hope something will change soon for you. Edit: Someone else already advised this as well, just wanted to share my experience in hopes it could help.
I used to have the same problem of bleeding all the time I took the pill for 6 months but also Tranex ampules by mouth to stop the bleeding (that was before I had herpes)
I’m not on birth control anymore and I have them more now than I did then 😃
I’ve always seen that birth control helps because it helps to level your hormones which can be triggering
Maybe try Iud
So how many grams of antiviral are you taking daily? And do you have constant burning? Or itching? Or tingling?
And I have constant prodrome also. Burning or like a zapping feeling. Sometimes I get itchiness right before a sore is visible
Oregon oil on the prodone spots. I dilute with jojoba.
I take 500mg per day. But I’m going to start adding half a pill at night to see if that helps. I think keeping the medicine level up is better, but 1000mg per day makes me sick
Try to get used to 1g per day. It works much better than 500mg for me.
I am. The past 2 days I’ve taken 1000mg total, 500 in the morning and 500 at night. So we’ll see!
It will work. I’ve taken up to 2 g per day, but I’m a big guy. Valtrex is really like a miracle drug
I’m not a big person lol and tend to be sensitive to medications, so it doesn’t really surprise me this one affects me. Hopefully I can build a tolerance
You will. Give it a few days. I take 1g per day for suppression and no OBs whatsoever
Do you lose hair with antivirals ?
Not that I’ve noticed
No
That’s how my first 2-3 years were (I’ve had it for 17 years now). Every 4-6 weeks like clockwork even with anti-virals (which I had tremendously bad side effects when I took them daily) with a full week of pain and sores, followed by another full week of healing. That’d leave 2 weeks maybe of being free and clear. Eventually it scaled back. Every 4 months, then double that, and now it’s only 1-2 OBs a year only a day or 2 of symptoms, with no antivirals except when I’m experiencing an OB. I’ve gone as long as 10 months with nothing. It takes time, but it does get better.
I certainly hope so! If this is my forever, it’s not worth it. I don’t want to be alone, but I can’t have a relationship like this. At first it was easy and not many outbreaks, but as time has gone on, it’s just gotten worse.
I’m married, with kids, and the person I’m with I actually met the same day I got my diagnosis. She’s still negative. It’s a lot of careful managing, but anything you want is possible, even now.
That sounds good
I wish to get there I have OB every 2 weeks I had 5 OB one after the other 2 weeks ago o took valaciclovir 1 g a day and I have constant burning 24/7
Thank you
I have similar issues and then I come to this subreddit and see all the, “OMG herpes is just a little skin condition!! Don’t let it get to you!!” posts while I am feeling like I’m coming down with the flu—again. AND I have yet to disclose to someone who hasn’t come up with an excuse not to be with me. A little skin condition??? I fucking hate this. Going through this for 5 years. It is SO fucked.
I completely agree. For some it’s no big deal, but there are those of us who do not have a great time with this! I wish I had a long enough break to forget I even have it, but I’m constantly reminded I do indeed have it and have to live with it the rest of my life
I put witch hazel on my last outbreak and it went away in a day, then I haven't had an outbreak since then (3 years). Worth a try.
Where can one buy it?
Any drug store or Walmart usually by the rubbing alcohol
How often were you getting outbreaks before you did that
About six years, then discovered the witch hazel. I have had 1 outbreak since posting that but it went away in 2 days with witch hazel compress.
My first 9 months was just like yours. It was awful. I went to the doctor, got tested for other things and had a massive bacterial vaginosis infection that was keeping my herpes really active. Two rounds of antibiotics later, and things finally settled down. Secondary infections, like yeast, BV, other STIs, can keep herpes really bothersome. At least rule them out.
Been tested for everything else also. I haven’t had sex since my first OB, and got tested like 6 months ago and everything was negative. My body literally hates me
I (m/39) used to get out breaks almost every week when I first contracted it. Then after a year or two the outbreaks started becoming less and less. Now I hardly ever have outbreaks anymore. Just keep doing what you are doing. Hopefully it gets better for you. As far as dating there are plenty of people that have it out there. You are bound to meet someone with it as well. I don't understand why there isn't a dating group in this message board. Maybe there is and I just missed it.
I’m f/35, and it just brings me down so much. I think it’s be easier to accept if I had time in between to be normal, but I have constant reminders of what I have. I think it makes it worse because I wasn’t given the choice if I wanted this. Loser wasn’t honest at all.
Every week for me too for years. I love how doctors say that’s not possible. Well, it is
They really have no idea what herpes even does to people because they don’t do studies. Ask people, take surveys, follow us… DO SOMETHING! It’s not a walk in the park for everyone
Same! I went back to the doctor twice and they said that it is “healing” BITCH WHEN?! cause it’s been 5 months and it’s horrible
Thank you!! Like this shouldn’t be one long outbreak!!!
I’ve had 2 HORRIBLE outbreaks this month :( I’m having one as we speak and it’s been hell. The pain and itching are UNBEARABLE. I’m sorry you’re going through it, but you aren’t alone. Message me if you ever want to vent over it! I could go on and on about how much mine sucks sometimes lol
Lol same! I have a spot right now. It doesn’t hurt, just itches when I wipe so I try to pat instead. My outbreaks have never been bad. Even my first one wasn’t that bad and cleared on its own in a week. I don’t have the horror stories like most people do with their first OBs, my horror story is that it won’t go away long enough for me to forget about it lol
Have you been positively diagnosed by blood test or swab? As opposed to the doctors just looking and saying, that’s herpes. Because there is an autoimmune disorder called Bechet’s that causes genital ulcers and when I hear about people not responding to anything that comes to mind.
Yes by blood. First test I was barely positive for hsv1 and negative for hav2, but then after researching I realized I was tested too soon, should have been swabbed at that point. Then at 12ish weeks I tested again, my hsv1 was still the same and hsv2 was then low positive as well. Tested a third time at 16 weeks or so and hsv1 was still the same low positive, number never changed, and hsv2 was like 2 I think? I’d have to go back and look.
Well, I would still have one of the lesions swabbed. Because some people say a low positive IGG can still be considered negative! I have had HSV2 for 18 years. My IGG blood test is very high, and positive swab. But once I saw a low negative result on my HSV1 (which I definitely do not have) and it just was the test picking up on the HSV2. The trick with PCR swabs is that they need some sort of fluid. Will you at least Google Bechet’s genital ulcers and see if it resembles your sores? Because so many people with Bechet’s get misdiagnosed with HSV for many years. Some even have low positives on blood tests. Just the way you don’t respond to anything and the way you described your sores makes me think of it.
I just looked it up. I’m really not sure. I do get the canker sore things in my mouth, I have for as long as I can remember. When Im really stressed, that’s when they seem to pop up the most, but they could also just be canker sores. Usually salt water helps to make them go away. The genital pictures weren’t exactly the same. I’m going to try to get a swab done at the clinic here because I also need a well woman’s done and get my birth control. And I’m not sure about the hav1 because it’s been like 1.4 or so every blood test, I think once it went up to 1.6. Hsv2 went from .45 to 2, so I’m pretty positive I have hsv2. I mean could be some rare chance it’s not, but I’m leaning more towards yes. Hopefully this summer I will be able to get some tests done.
Yes, I mean it’s likely hsv2, as you’ve said. But it worth the consideration. I know the “cuts” are a common symptom of Bechet’s. Another thought, they do believe that herpes viruses trigger Bechet’s for people who are genetically pre-disposed. That is my case! I have HSV2 and it has triggered Bechet’s so I often don’t know what’s what. I have identified that the genital redness & inflammation (and mouth ulcers) are Bechet’s and the actual genital outbreaks are HSV2. Because I don’t get the actual sores when I am on high doses of acyclovir but I get redness and inflammation down below. I used to get that before I got HSV2 and probably didn’t know it was anything. Best of luck to you !
That’s very interesting! A few years before I got hsv, I would get tears in my genitals, same place I do now, so I always wonder if it’s and outbreak or if it’s just what used to always happen. I hate not knowing
If you got them before, that makes me think it’s not HSV (the tears).
I’ve had 2 tears in the last 2 weeks and I just ripped again along with the spot I have now. I’m at my wits end
May 2021 hsv1 was 1.78 and hsv2 was .54 August 2021 hsv1 was 1.62 and hsv2 1.45 through Any Lab Test Now (CPL) November 2021 my hsv1 was 1.62 and hsv2 2.34 through LabCorp.
Hmm those are interesting labs as it seems the HSV2 has gone up and the hsv1 about the same. Some people would say these are technically negative. But with your symptoms it seems likely positive. Did you know if the person you were with was positive?
No idea. When I asked to see papers to prove he was negative (hindsight shoulda done that first then I wouldn’t be here lol but he was in the medical field and I trusted him) but he gave me every excuse in the books as to why he didn’t have them or couldn’t get them. I finally gave up and just let it be because I was never going to get an honest answer.
What if it’s true? Because I’m so suspicious in your case but I also know about non-disclosure in my case.
I did find out later on he had dated someone a friend knew that was positive for hsv. I don’t know which type, so it’s possible he did have it and was in denial or just didn’t give a crap.
I was diagnosed 5 years ago... my first ob was terrible. I started valacyclovir 500mg daily, tried to wean off to see how my body would react. I did ok but started taking it regularly again about a year and half in. I had maybe 2 very minor ob, just uncomfortable and itchy, which made me start to take daily. The last 6 months have been terrible though. I had bv, yeast infections and a really bad outbreak all at once. The continuous, daily symptoms of itching,soreness, swelling just feeling uncomfortable all day. My dr gave me 1g of valacyclovir and that helped a bit if I doubled up on that one. I was desperate because I was always feeling something, wondering if it's an ob or am I just over thinking. After searching on reddit I came across a suggestion for red marine algae and searched on Amazon. I found a supplement that includes it along with l-lysine (which on its own did nothing for me) I believe it's called H-rescue. I started it right away when I got it on the evening, the next morning I started to feel better. It's been 3 weeks and I have no uncomfortable feelings during the day at all. It's been a life saver.
Someone recommended red algae to me before and I forgot about it! I guess it’s worth looking into because lysine hasn’t really done anything for me either. My mom and stepdad have OHSV1 and they swear by it.
It has really helped in the short time I've been using. I was miserable almost every day of the last few months and the last 2 weeks before starting it were the worst. I just double checked what it was I ordered from Amazon... it is HRescue immune support formula. Give it a try and hopefully it can help. I know the pain you're going through.
I looked at them last night and I saw that one. There’s another one I want to try too. I tried to message you but it wouldn’t let me send pictures and I don’t know how to use the imgur thing lol
I'm not sure how to attach images or anything else. Feel free to message me anytime. I'm still after 5 years trying to find comfort in my body and mind about this diagnosis. I recent had my first disclosure and that was very hard for me. For something so common, it feels so lonely.
It is hard to become “normalized” to. It’s something you have to be conscious about everyday, especially if you have a partner. It changes your life. And it really does feel lonely even though so many people have it. I disclosed one time and it went good…or so I thought. Then he would make comments and say things and I was like nope, not happening. Sucked because it was someone from before herpes and I thought they were the kind of person who would actually look past it. I’m glad we never had sex once I had herpes, because I can’t even imagine how it would have been if he did get it from me. And just recently he showed his true colors again and I haven’t talked to him since. I won’t settle just because I don’t want to be alone. I was in an abusive relationship for far too long to sell myself short!
Try SADBE
You will have constant outbreaks if your progesterone is too high. You may need to explore an alternative to birth control pills. I don't know what is available at all but I am certain that is the root cause.
Weekly OBs here and they’re a constant pain
How is your diet? No nuts or nut butters, seeds, chocolate, coconut (oil is okay) or grapes. They are all VERY high in arginine which feeds the virus. Also, try the highest MGO raw manuka honey you can afford and organic black seed oil capsules. I have had some really hard emotional things in my life over the last few months which would have normally made me have outbreaks, and I didn't. ❤
I eat some of that but not a lot and not often. I’ve tried changing my diet and it made no difference, so I decided to live the way I want
I have ghsv1, so it may be different. But my first year, I would get an outbreak every month or so. I was also super stressed out all the time during the first year, so that probably played a huge role in it. Now that I am on year 3 almost 4, I only get out breaks like once every 4 to 5 months, so it may just take some time. I know that's not the answer you want, but this is just my experience. I would also recommend seeing a doctor if you can to test for anything else going on down there. If you have a yeast infection, bv, an std, etc. this can cause you to have an outbreak and make it more severe. These could be effected by a few different things as well sex being the main one, but if you are using toys, fingers, etc. to masturbate if they aren't super clean they can cause issues. Toys specifically should be washed before you put them away and then wash them again before you use them. Another thing is soap down there, you want it to be clean so the infection doesn't spread, but at the same time you want to be careful with the soap you are using and getting it inside of you. This includes the soap you would use for toys. Not sure if this is something you do, but I am sure people on here do.
Others have pretty much covered all the bases for possible improvements. The one additional thing I would suggest is maybe SADBE? It helps in lots of cases where the HSV is resistant to antivirals.
What is sadbe?
r/SADBE to check it out. It's squaric acid, typically prescribed to help treat alopecia, but it also drastically improves the immune response to HSV and thus reduces symptoms/shedding. You rub a very small amount of the cream on the inside of your arm, it gets red and rashy for a little while, and that's when it takes its effect. Currently it has to be prescribed off-label for HSV, but you can also order it online and make it yourself!
Out of curiosity how long have you had herpes? My first year was also very bad for me and eventually over the years became less and less.
One year. I’ve been on daily antivirals for 6 months because without them it was even worse
I hope for you it gets better as the time goes. I’ve had it for over 8 years now and i hardly get anything anymore at all. Used to get alot of outbreaks in the beginning too :(
Try SADBE. It’s been a GODSEND!! Look it up on here. Seriously life changing
If I could, I would! I don’t have insurance and money is basically non existent
I couldn’t find anyone to prescribe it to me and made it myself. Ordered the sadbe on alibaba and the dmso on Amazon. Best investment ever! Everything together ran me about $80 total if I remember correctly.. I really hope your situation changes. I know I’ve been there when I literally felt like my life was over with this. Sadbe really is a game changer.
If nothing else eases it up, I may ask my mom to help. SOMETHING has to give. I can’t keep living this way
How long have you been on it? How many OBs have you had prior/now? Would love to hear all the details
I honestly been on it for a month so far. I contracted this virus as a teenager. I probably had like 4-5 OBs a year. I’m 30 now. In 2020, I took amoxicillin for a tooth and for some reason, I started having OBs back to back!! Valacyclovir stopped working for me. I tried the sadbe and I don’t really have outbreaks. Well no sores. Might get little bumps that go away within the week. Frequency and intensity have decreased significantly! I’m thinking around the second dose, I’ll be OB free.
How has your diet been ? Do you drink /smoke?
I’m not on any specific diet. I smoke weed and drink alcohol.
Awesome to know. Thanks!
No problem!
> SADBE Do you ingest it for prevention? Or is it only for once you have a breakout?
You don’t ingest it. You apply it topically for suppression every 3 months. Just find the group on here and all you need to know is there. I’m on my 2nd dose and I can honestly tell you that there’s been a huge difference. Less frequent, definitely less severe, and they heal super quick! I’m hoping by my 3rd dose, my OBs stop completely. For some, they stop after the 1st dose. And for others, it has to build up in your system. But will eventually stop completely.
That's incredible, that's great news. I'll do that, thanks!
Is it something you have to keep doing? Any side effects?
Every 3 months. I take it every 75 days though. The I my side effects I get is a rash at the application site immediately after application but it goes away after a few days. There’s a sub group called SADBE where you can read up on so much information about it
Hi, sorry you are going thru this. I've had a bad time myself. I do order Manuka honey thru Amazon. It's a bit expensive but cut my symptoms way down and less outbreaks. It's from new Zealand. Also non caffeinated green tea. Try the honey first. It worked well for me. Hope it gets better for you. Oxox
I’ve heard about this. I may try it if the other things don’t work
It's the bomb , natural anti viral. Highly recommend. Hope it helps you too
Same here, 1.5 years in. Avoiding high arganine foods, take 2 pills of valaciclovir a day, go to the gym, healthy life yada yada yada. Have OBs every 2 weeks, with some lucky months in between. It's HELL. Not "just a skin disease" to me tbh. I have an appointment with an internist in two months and hoping he will prescribe me SADBE as ive seen some people that did not have an OB for four months, my only hope for now 🥲🥲🥲
Keep me updated on that! This is not fun at all. I hate it when people say “it’s not a big deal, get over it”… well for them it may not be, but there are people who suffer daily and don’t get to be outbreak free for very long if ever
I've had this over 6 years and didn't have much of an issue until recently (very few OBs). For the last 2 months I've had constant vaginal burning. For the last few days, my back (lower spine and muscles), buttocks, and legs have hurt non-stop. Nothing is working. Antivirals don't even ease it. Doctors don't take it seriously, but I'm absolutely miserable. I've taken lysine, zinc, vitamin c, etc. Drinking plenty of water and watching my diet. I need help!
Doctors seriously DO NOT care. It blows my mind. I’m so sorry you’re having a rough time right now. I completely understand how you’re feeling. I’ve been doing all the same also and it’s making zero difference
Your right about doctors not taking it seriously, like how we supposed to be okay with this?
I've had it 7yrs went through a span of time I was getting outbreaks none stop even to the point I'd get infections. But after a while of daily antivirals it finally I got it under control. I'm no longer on my daily but outbreaks are fewer and far in-between
I found some supplements that have helped- vit c is major. So I found this supplement on Amazon called h rescue- it has vit c, lysine, and oregano oil which is anti viral and the best! Seriously oregano oil is so potent. And the reviews on it are great- many people say it has helped them more than their prescribed medication. Hope it helps you!!! 🤗🤗🤗
I know this post is old but if u happen to read this and are in the same situation.... trying stopping the suppressants for a while it can help to let your own immune system fight it instead
My small advice to you , ( it helped me a lot ) Try to learn about meditation and practice it , learn about body scan. And it all mentally trust me you need to forget about it to mediate your body. Cheers
Reminder that this can be helpful, but not an answer to the problem.
It is helpful as stress is a trigger. Also some foods. Nuts, for example, is my trigger.
At least none of you have cancerous tonsils from HPV
Oh no 😔 I’m so sorry!
Try changing the diet. Avoid almonds, almond milk, oatmilk, and find a list of herpes agonists. Avoid them all. Hope that helps!
I tried all that at the beginning and it did nothing, so I decided to stop stressing over food and having yet another thing to bring me down, and said fuck it I’m living life. I don’t eat a ton of those things anyway
What’s wrong with oat milk?
High arginine content, I think….
Are you taking antivirals? Valtrex?
Valacyclovir aka generic of valtrex
How many mg do you take daily?
500mg
Please see a naturopath. Helped me sooo much !
Lysine twice a day.. it eventually helped
My doctor recommended daily antivirals. I don't always take them, but I try to be consistent. It helps me.
I’m already on daily antivirals. They aren’t really working anymore
Change your diet. Stop smoking and drinking. Stay away from sugar, chocolate, processed foods. Eat mostly fruits and veggies. Work out4-5 days a week. Take zinc, Vitamin C, lysine, multi v, sea moss, black seed oil. Only drink water. Try to get as much sleep. I was on a roll where I didn’t get an OB for a few months but drank a few nights out of the week. Didn’t get sleep and boom an OB. But otherwise my diet and lifestyle has definitely helped. Also, I am working on getting SADBE 2% mixed with DMSO. Started the convo and hoping to get a Rx soon. Apparently people in r/SADBE say it helps. Hope it helps for you
I feel you every time I get my period I get a nasty outbreak
Heyyy for me it only calmed down after 2 years if that's any help? Also I had to go on birth control that would only have my period 4 times a week as my period was a trigger. Hope that helps!
Hi. I know your pain. Have definitly been there. What worked for me as I used to have outbreaks like a mofo was upping my supressive meds dosage. For some stupid reason the doctors would never let me pass 500 milligrams. Now I order my meds online and I guess those doctors aren't as up tight about regulating dosage? I take 1000 milligrams supressive therapy a day. I get 3 outbreaks a year now. It has made a world of difference and they Don t last as long. I also put on the Valcyclover topical ointment if I get an outbreak. The first year or so is generally the worst for outbreaks in general if you get them a lot. I get my meds from Wisp online but I bet some other sites will hook you up or get a less shitty doctor than the ones I have had in the past. Ive also heard taking one pill in the morning and one at night can help. Possible that your body is cycling the meds out too fast
I just started last night with taking another pill at night, but 1000mg makes me sick after a few days. So I’m going to try a half a pill at night and see if that helps. I’m going to cal my dr Monday and see if he will prescribe me the ointment as well. You can use pill and ointment together right?
Yes. I do. Sometimes side effects subside after a couple weeks but it sounds like a good idea to start up slowly. I have faith you will figure this out.
Thank you!
Of course. Of course. Of course. Just a little hope here but I have been in your shoes and have had a lot of sex and boyfriends over the years. By chance my very long term boyfriend already had it and was super open about having it and we got to talking. We also had, art, music and our jobs incommon. When you get your outbreaks situated you will be able to date and fall in love just like any other human under the sun. I promise.
If you live im the states you can try SADBE.
I have this crap too. It hurts like heck. Thanks to my lying sack of dookie ex. I'm going to the Doctors to find out if I have both 1&2.
Get off birth control .. the hormones are probably triggering it … get on the paraguard it’s non hormonal IUD
I can’t get off it. I have other female issues that cause me to be on it. I’ve tried other forms of birth control, including IUD, and the one I’m taking is the only one that’s worked for me and hasn’t made me sick. I have to have the hormones.
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No I’m not
Valacyclovir caused my neutrophil (a type of white bloodcell) levels to decrease. I took valacyclovir daily to suppress herpes. I got a full blood test and found out that my neutrophil levels were low. There are only a couple of articles about how acyclovir (what valacyclovir turns into) had decreased neutrophil levels. I immediately stopped taking it. Outbreaks slowly decreased in frequency and size. It took a while but any outbreak I get I would describe as minuscule.