ash128083

@mr_hopp I cannot think of any added stress in my life that can be contributing to the increase in outbreaks which is why is is becoming so frustrating for me and also the fact that the outbreaks are not a typical outbreak anymore. When I was diagnosed 10 years ago I would get a typical sore that would eventually heal. This would happen every few months which is why I started suppressive therapy. I had no outbreaks for about 8 years. In the course of those 8 years I became pregnant twice, one child I lost and the 2nd one is perfectly healthy, got married, and had other very stressful events and still was outbreak free. In February 2018 I started antidepressants to see if they would help deal with the loss of my infant son, a very small dose, and all of a sudden I had a horrible outbreak, both internal and external, that was so bad I couldn’t walk. I immediately stopped the antidepressants and every month after that the same thing would happen despite being on acyclovir. Finally after a year of suffering my doctor put me in 1g of valacyclovir and that was great for 6 months. I definitely see a difference in different manufacturers of the medication but I’m not sure why all of a sudden this is happening. I exercise regularly and eat healthier than I ever have. I take vitamins and lysine but I can’t seem to get this under control. I’m 34 and don’t think I’m premenopausal (I read that can have an effect). My husband and I want to have another child eventually but idk how that is going to happen when I feel like I have constant symptoms (he does not have the virus). I’m becoming extremely depressed and at my wits end.

Hey! Did you ever end up going to the doctors to change your meds? How are things going?

Has anyone been on brand name Valtrex and the generic valacyclovir? Have you seen that the brand name works better then the generic? (I know generics are supposed to be the same but who knows). I feel like the generic isn’t working for me and want to ask my doctor to send in a prescription for name brand only and pray my insurance will cover it.

I’ve been trying to find new articles on hsv and it seems like everything is from at least a few years ago or more and reiterates the SAME things that I feel like aren’t even true. Does this virus actually mutate/change causing outbreaks to become more frequent and change how the outbreak presents itself? Does this make the virus less affected by antivirals? I’m at my wits end after having genital hsv for 10 years now. My outbreaks have gotten completely unbearable in the past year and a half even while on antivirals. Everything I read says this is supposed to get better. Is anyone’s symptoms getting worse? I wish more doctors would do more research on this and try to find a better medication for us. The mental and physical suffering is becoming too much.

Hey! I was on acyclovir 400mg 2x a day for 8 years and it was as if I didn’t even have the virus anymore, then, all of a sudden, I started getting horrible outbreaks every month, sometimes multiple times a month and constant prodrome symptoms. It made no sense whatsoever. I switched to valacyclovir 1g once a day in January, and it has helped a lot, but, I still feel irritation/discomfort throughout the month. I checked the manufacturer and it is also Camber. I’m going to ask my pharmacy if they can refill my prescription with the Mylan brand next time and see if that makes any difference like you said.

Yes the symptoms are better but not as good as they used to be when I first started the medication 😕

I’m a few years late to this conversation but I am experiencing the same thing! I was diagnosed about 10 years ago. For the first year I would get a typical sore that would blister then scab over. I was on acyclovir episodically but was getting outbreaks frequently so I went on suppressive therapy. At first my Dr put me on acyclovir 200mg 2x a day, which is super low and not even the recommended dose for suppression but for a year it worked. After I had my son he upped the dose to 400mg 2x a day and that worked wonders for 8 years! The ONLY time I would get an outbreak, which now came in the form of a yeast infection almost because I would get internal symptoms) is when I was on birth control and this happened every 3 months for a year. When I stopped taking BC the outbreaks stopped completely. Fast forward to last year, I got a horrible outbreak while on suppressive therapy. I could barely walk. It was all internal, no sores, but redness and swelling. I thought maybe this was a one time thing but no, after that I would get the same awful outbreak every month during ovulation for almost a year. I finally went back to my GYNO and he told me its rare to develop resistance unless you’re immunocompromised. He changed me to valacyclovir 500mg once a day which I thought was too low and that did nothing. Finally in January I went to my PC and she prescribed me 1g of valacyclovir to take daily. I have been pretty much symptom free up until I started getting some discomfort this week (which of course is my ovulation week). I’m so worried this will turn into a massive outbreak. It has completely taken over my life. I don’t know why after all this time almost 11 years that I’m still getting these when I thought your immune system is supposed to suppress the virus and it supposed to become less frequent over time. I think what the doctors tell us it’s a crock of bullshit. I always feel terrible I can barely play with my children or be intimate with my husband. I exercise and eat healthy and take vitamins. It doesn’t make sense. Hope things are better for you now!

Hi all! I’m a female in my 30s from Boston. I’ve had HSV genitally for 11 years and am really having a hard time right now. I would love some local support.

I am so sorry. It’s sad that people are so careless. I contribute getting this to being young and naive and not educated on STDS. I believed the person that I was with and then my life was ruined. This was a time where all of my friends were sleeping around and I didn’t do that. I just got out of an 8year relationship and the next person I was with gave this to me. I don’t even know of it’s type 1 or 2 but it comes out genitally. I’ve asked both my doctors to test the type and they’ve told me it doesn’t matter because the symptoms are the same. But I want to know! It is so completely frustrating! It had been so long for me and I live a healthy lifestyle, exercising 5x a week, eating healthy, taking vitamins AND antivirals and there are days where I STILL am having discomfort. When I look there are no sores. It makes no sense. Last year at my annual check up my GYNO said it is extremely rare to develop resistance to the antivirals BUT this year at my check up he told me you can develop resistance. Well which is it?! I wish EVERYONE with this infection could band together and protest or SOMETHING to wake up these doctors and scientist so they finally take us serious and REALLY start looking for better medication or a vaccine or a cure. This takes such a toll on ones life both mentally and physically. Theres days where I am so sick of dealing with this that I just want to die. It’s becoming too much.

I truly believe when it comes to this virus, the people who have it are way more knowledgeable than the doctors. I feel like they only have information from outdated medical books. And no one cares to do enough research on a vaccine or cure because this virus isn’t deadly however I don’t think that doctors in general realize how much most of us suffer from this. It’s so frustrating! My symptoms have definitely not been typical for the past year until this past January when the infection was so bad that if I used a mirror to look at the inside of my vagina you could see sores. That is when I had enough, after a year of hell despite acyclovir. My PC was better at prescribing the 1g of valacyclovir than my GYNO. I ended up going to the gynecologist back in August because it had been eight months of hell once a month for a week to the point where I could not walk and he switched me to 500mg of valacyclovir when I told him that would not work. I have done my research and that is typically use for people who have nine or if you were outbreaks a year, and already I had one a month for eight months. I tried that for a couple of months and sure enough the week of ovulation I would get the symptoms. Then in October I decided to take two of the 500 mg and that was the only month that I was symptom and outbreak free. So in January I called my primary care and she prescribed 1g of that and things have been a lot better but I’m still super paranoid, I feel like every itch or feeling down there is the start of something and it makes my anxiety spiral out of control. It doesn’t make sense that after all these years the virus would get worse, when all I’ve read is that it supposed to get better. All I can think about is the future and I’m dreading it, growing old and suffering from this, ending up in some sort of a nursing home and hospital because I can’t care for myself and just being in constant pain and discomfort. I would see what the hospital says, maybe get another opinion from a different doctor. Tell them you want to go on the 1g of valacyclovir and fight for yourself as a patient. This thing can be truly debilitating at times. Good luck!

I am somewhat in the same boat as you and terrified to tell my partner. We have been together for...8 years. It’s awful. We are married. We have a son together and are currently looking for buy a home. Idk how I let this spiral for so long but now I feel like I’m in too deep and don’t know how to have the talk. I give you so much credit. The only person I’ve told is my best friend and she doesn’t think that having the virus is any reason to leave someone you love (she also has hsv1 orally so she kind of understands). Theres been so many times where I’ve tried to tell him. We’ve been through so much together and every time I try to get it out something bad is going on and i don’t want to make life worse. I did not get outbreaks for 7yrs on my medication and then all of a sudden they started coming. I changed my meds and it’s helped but each day I’m consumed with guilt. I’ve been suicidal over this because I’m so scared he’ll leave me and know that it’s terrible this secret I’ve been keeping. He’s never shown and signs or symptoms and with the medication and condom use I know his chances of getting this is low. How did you end up having the talk? I can’t handle keeping this in anymore but I’m petrified.

Hi there. I have had this God awful disease for about 11 years now. The first year I would get typical outbreak with a sore that would scab over and heal. This would happen every few months so I decided to go on suppressive therapy, acyclovir 400mg 2x a day. This worked wonders for 8 years and then suddenly stopped working. I would get what felt like a yeast infection every month during the week of ovulation, not a typical outbreak, but worse. The pain and itching internal was so bad I could barely walk during this time. Finally in January I told my doctor I want to change my medication to 1g of valacyclovir daily. It has helped so much better but there are a day or so where I feel a mild itch or pain but it will subside. I would get on that medication and see how you do. I thought the virus is supposed to get better the longer you have it 😒

Hi there. I was on acyclovir 400mg 2x a day for almost 8yrs when it suddenly stopped working. I switched to 1g of valacyclovir in January and have had much better results. Sometimes one medication works better than the other for some people.

Get one 1g of valacyclovir it has helped so much more than acyclovir!

You can most certainly travel with your medication. I always bring mine with me.

Hi all! I was wondering how many of you have chosen to be on daily suppressive therapy, which medication and dose you are on and how it is working for you. I’ve had the virus (genitally) for about 10 years and was on acyclovir 400mg 2x a day for 8 that all of a sudden stopped working so my doctor switched me to valacyclovir 1g daily two months ago. So far these two months I have not had an outbreak (this past year was hell for me, 1-2 outbreaks a month for a year while on the other medication) thank God and I’m hoping they continue to work. Does anyone feel like one medication works better than the other? Has anyone’s outbreaks gotten worse over the years as opposed to better? Has the nature of your outbreaks changed over the years (I used to get a typical sore someone on my labia but now the outbreaks occur in the form of what feels like a yeast infection inside of me with a lot of pain, swelling, itching and irritation). I also take 2,000mg of Lysine, a probiotic and various vitamins, exercise daily and eat pretty healthy. For those in a relationship where the other person is or was hsv negative, how long were you together before they contracted the virus, or have you still not passed it?

@@gorgeoustechie ugh we have been together for 8 years, married almost 2 and have had 2 children together (i also have a daughter from a previous relationship). Things weren't typical for us when we got together, we just kind of happened even though we weren’t supposed to, there was a lot of trauma early on and difficulties and we never discussed our sexual pasts, there were many times I wanted to tell him and couldn’t get it out, I just didn’t know what to say and got deeper into this “secret”. I never had symptoms or outbreaks and have been on antivirals for years and we use condoms very frequently so it wasn’t like I physically had to hide anything up until now. My therapist and I are working on a plan to tell him because I don’t know where or how to do it. It’s terrible but it is going to be done.

I’ve been reading up on monolaurian and am just concered about something called the jarisch herxheimer effect. Not sure how common that is. I also was told red marine algae helps. What exactly does a neuropath do?

I have been on antivirals for suppression for 8 years. My doctor just switched me from acyclovir 400mg 2x a day to valacyclovir 1g once a day because it seemed like acyclovir wasn’t working like it used to. Does anyone have any insight on if long term use of the antivirals actual make the virus stronger? My doctor said antiviral resistance isn’t common in healthy patients but I’m just not so sure. This past year has been HELL for me with hsv (genitally not sure if its type 1 or 2 and my doctor said testing to see for which type doesnt matter because they present themself in the same way) and I’ve had it for 10 years. I thought over time your body naturally suppresses it better. I’ve heard from a few people monolaurian and red marine algae help but I’m not sure...

Hi! I’ve had HSV for about 10years. When first diagnosed I would get typical outbreaks, a small cluster of blisters that would turn into a sore, every few months, and decided after a few years to go on suppressive therapy. For the first 7 years I had zero outbreaks and zero symptoms. About a year and a half ago, however, I was getting what felt like prodrome symptoms and it was happening constantly. I would feel irritation around my clitoris and inner labia. Sometimes it would look red but it would go away and never turned into an outbreak. I started using condoms with my husband because he is negative and I wanted to keep him safe. Fast forward to 11 months ago I started getting what I thought was yeast infections every month the week I ovulate. I wasn’t getting any typical sores just becoming red and inflamed and extremely uncomfortable. I started to think that the virus somehow changed the way it presented itself in my boday and would increase my dose during these times in addition to using over the counter monistat. Is resistance to antivirals common in people with normal immune function? I went to my doctor on Wednesday and they changed my medication to valacyclovir 1g daily and said this should help. So far I still feel like a “zing” down there on and off but no sign of anything. Hoping this medication starts working like it’s supposed to.

@Grace78 @Faith8 @beBravebeBOLD Well I FINALLY told both my therapist and PCP about my HSV and it felt like such a weight being lifted off my shoulders. My therapist even told me that not only has she oral herpes outbreaks but she’s also had a vaginal herpes outbreak about 20 years ago and hasn’t had one since. It made me feel a lot better but thought to myself “well you’re lucky.” The more I think about it the more I believe that a lot more people have the virus than what all the websites state. Of course it feels like less of a big deal when you’re symptom free. My PCP said that in my case she thinks the prednisone use wekeaned my immune system and where I get sick a lot I need a higher dose of the valacyclovir to get it under control. She doesn’t think I have any underlying issues or resistance at this point and said to give it several months on the 1 gram dose and see if theres a difference. She also took a culture to rule out a yeast infection. Where I just finished the Monistat 7 she said it didn’t look like one but that could’ve cleared it up. She didn’t say that it looked like I was having an outbreak either, so I’m not sure what it was. I started my first dose of the 1g valacyclovir today so I’ll see how it goes. I feel an occasional itch or prickle feeling on and off today and I can’t stop thinking about it. It goes away but I dwell on it andI swear it makes it worse. Maybe us tormenting ourselves over this is making the symptoms worse, but its so hard not to. I ended up cancelling my appointment with my OBGYN. I figured I’d wait and see if the new dose helps. Fingers crossed. I haven’t had sex with my husband in almost 3 weeks and I’m so scared to. He still doesn’t know I have this! I’m so scared and ashamed that I have let this go for so long. It’s eating me alive. I see my therapist again next week to help me come up with a plan for telling him. I’m so lost. How did you all disclose to your partner?

Grace78 I am so sorry to hear about your loss. When I was pregnant with my 1st boy we found out he had a congenital defect and would most likely not survive. I was on acyclovir at the time and thought that contributed to the defect. My doctor reassured me that tha antiviral is very safe to take during pregnancy but I know what you mean. I still think about it. I went on to have a healthy baby boy a year later (still taking antivirals during that pregnancy as well). My husband and I are currently looking to buy a house and want to have another child but I feel like that’s never going to happen because I won’t sleep with him without using a condom and I always make excuses. I have also become the “blow job queen”. I feel super guilty about not wanting to have sex with him and try to do than stand to at least keep them satisfied but it hurts me so much that I can’t love my husband, and be intimate with him because of this. The only thing I can think of that has caused my virus to spiral out of control is from being on prednisone so much in the past year for my asthma. I found a post on here from a man who is experiencing the same thing from being on the steroid. I had no idea that I could awake in the virus, but one would think after coming off the medication and starting to build up your immune system again the antivirals would help suppress this thing. I can’t imagine being an elderly woman and suffering from this like I am now. My primary care doctor doesn’t even know that I have this my gynecologist is in a separate medical facility and I was always so embarrassed to tell her. I always feel like I’m being judged. I wish more people would communicate about this disease and talk about it, because I feel like so many more people have it than what the statistics say. They won’t even test you for this and less you specifically asked not to mention people who don’t have symptoms and have the virus or who are too scared to get tested. I don’t know why there’s such a stigma. I wish we could all be like oh I have herpes, so do I ::high fives:: so at least we wouldn’t be made to feel so awful. I’ve been on anxiety medication on and off since the death of my son and up until recently I have had to take the anxiety medication almost daily because of what this virus does to me mentally.

I don’t know why doctors aren’t researching this more and listening to their patients and trying to come up with betyer medicine/vaccine...anything. I feel like it’s not a priority because this virus won’t physically kill you, but mentally it really takes a toll. I feel like I am more infectious than ever because of the constant symptoms. I never want to be intimate with my husband, even without symptoms, even using a condom because I am in such fear of passing this on to him. I can’t enjoy sex anymore because I’m so paranoid. Hopefully my doctors give me some answers this week and I can share them with you.

I feel your pain. I have had GHSV (not sure if its type 1 or 2) for about 10 years. The past 8 I have been on acyclovir that worked wonders and never had any symptoms or outbreaks until last March. Since then I have had constant prodome symptoms that don’t seem to go away, itching, irritation, discomfort, redness etc.,. I’ve also started having what I thought to be yeast infections at least once a month because I’m not getting typical sores but now I think they are outbreaks. This past one happened 2 weeks apart. I’ve upped my acyclovir to try and get this under control but it has been completely debilitating. My doctor did prescribe me valacyclovir 500 mg once a day and the only month I was free from anything was in October when I took 1g a day which is the correct dose to be on from what I’ve read. I have an appointment with my PCP and Gyno this week because I don’t know if there’s an underlying issue or what to do anymore. It really takes a toll on you mentally and physically. Hang in there! What dose of valacyclovir are you on? I definitely want to stay on that just to try and help with the transmission (my husband is negative). I also take a bunch of supplements and vitamins but nothing seems to be helping.

I’m a woman but have been experiencing the same thing. I’ve had HSV2 for almost 10 years and have been on antivirals for 8. I also have asthma so I am very familiar with prednisone and am usually on that at least once a year. In the past 8 years I hav had zero outbreaks even while on prednisone up until this past year which has been pure hell. I have had to use prednisone maybe 3 times in a year for my asthma and have been having horrible outbreaks at least every month. The daily antivirals do not seem to be working eventboughI increase them during my outbreaks. I take 2,000mgof lysine a day, vitamin c, ehinacea, zinc, b complex, and olive leaf extract, I eat well and exercise 5x a week, no added stress besides these chronic outbreaks which seem to be getting worse and worse. I’ve finally made an appointment to discuss with my doctor what to do and to get tested for other diseases/hormone problems etc because it has been completely debilitating.