ash128083

I am suffering greatly as well. I’m 34 and two years ago this disease has made my life spiral out of control after not having any affect on me for 8 years. Where ate the clinical trials for that drug? I am so desperate at this point.

Are you having just oral outbreaks or genital outbreaks as well? I would give anything to have this on my mouth instead of down below. Valacyclovir worked for me for 8 months and being sick has set me back I think. I get sick a LOT, which makes me think I have an immune problem, but, I’ve always been sick a lot so I don’t know why all of a sudden I can’t fight us. You are around the same age as me, I’m 34 and I started to wonder if I was going through perimenopause even though I’m young for that because I read the herpes virus can become a pain during menopause because of your hormones. I made an appointment today to get swabbed and see if I am resistant to the antivirals. I’m also going to ask for a referral to an infectious disease specialist because I cannot take it anymore.

I agree this is DEFINITELY more than “just a skin condition” and I wish doctors would take it more seriously and really try to find something to help us with this. The reason I think I have something wrong with my immune system is because I am sick constantly, at least every other month I am at the doctors. If I don’t get on antibiotics I end up in the ER because of my asthma that has gotten so severe in the passed several years. I just don’t understand how out of nowhere this started happening. So frustrating. I’ve been trying to find clinical trials somewhere because I’m desperate.

@Fmals When I was diagnosed 10 years ago I was not on suppressive therapy for about 2 years. I would get a “typical” outbreak, a single sore in one spot that would break through the skin and eventually scab over. That happened every several months and was nothing compared to what I’m experiencing now. I was on suppressive therapy for about 8 years until the acyclovir stopped working out of nowhere. I suffered every month for a year horrible outbreaks which at first I thought were chronic yeast infections. I switched to valacyclovir in January and was good up until October when I was ovulating, then I got sick and was on 2 different antibiotics and prednisone (which I only took 3 days and have been on it in the past because of my asthma and did not have a problem). So 3 weeks from my last outbreak I now have a bunch of little sores all over my vagina, I am extremely itchy and irritated, inside looks raw and red. I made an appointment at my doctors for this afternoon and I’m going to ask for a referral to an infectious disease specialist. I just can’t take this anymore.

I just really need to vent right now. In January 2019 I switched my antiviral to 1g valacyclovir daily. I was fine up until the end of October when I had an outbreak, this lasted about a week and I usually add half a dose to my meds at night. Well here I am 3 weeks later with another awful outbreak! I was just on two courses of antibiotics and three days of prednisone (which is evil if you have herpes) for asthma and woke up to itching, redness, irritation all over my vagina. These outbreaks are fat worse than any that I had when I was diagnosed 10 years ago. I went 8years outbreak free and then all of a sudden this virus is back with a vengeance. I am literally losing my will to live and and trying so hard to fight through it for my 11 and 6 year old. The constant physical and psychological pain is becoming to much to bear. Why is this happening?! After 10 years my body should be able to fight this off. Why has this gotten worse? Why aren’t the antivirals doing their job? I feel lost and alone...

I don’t know if it is type 1 or type 2 but it comes out genitally. My doctor swabbed a lesion years ago but never said which type it was and when I asked he said it “didn’t matter, they both present themselves the same way.” Very frustrating. Where did you read about a new vaccine? I pray to God for one every night, a vaccine, better medication, anything to alleviate the constant physical pain. Every thing the old textbooks say to do to combat this I do religiously, eat well, sleep, exercise, the supplements, nothing helps. After finding this forum and realizing that there are so many of us experiencing this you would think that the doctors would start listening and trying to find a way to help us instead of just brushing us off. I’m hoping an infectious disease specialist can help me. I’m starting to worry that there is something severely wrong with my immune system.

@TreeHugger44 I can completely relate to you! I am losing the will to live and am trying to be strong and fight through the constant outbreaks for my two children who need me to be here. I’ve had GHSV for about 10 years and in the beginning it was no where near as bad as it is now and all I read is this is supposed to get better. Crock of shit! I was on suppressive therapy for 8 years and it worked wonders until about 2 years ago the meds just stopped working without any explanation. I’m 34 now and have been living in hell for 2 years. I switched to 1g valacyclovir in January and got some relief for about 8 months but now again I feel like every 2 weeks I’m getting outbreaks. I double up on the meds so nothing ever breaks through the skin but I can see and feel them under the skin. It makes it so hard to enjoy life. I am constantly irritable to my children and family. I don’t know what else to do. I made another appointment with my OBGYN and am going to ask for a referral to an infectious disease specialist. I’m at my wits end. Resistance to antivirals is so low but for some reason I feel like I’m in that .03%.

@Irishgirl Thanks, I will try it. Now that the swelling and irritation have subsided I noticed small, tender, pimple like bump near my vaginal opening which I assume is a small sore but I was able to pop it so idk if I got it from shaving or if it’s an actual herpes sore. I’ve been taking 1.5g of valacyclovir for the last week so idk why this is happening like this.

@Lacey Hi. I’ve had the virus for 11 years now. In the beginning I would get a typical outbreak, a sore somewhere on my labia that would eventually scab over and heal, every 2 months. I wanted a better quality of life so I started suppressive therapy. For 8 years on alcyclovir 400mg 2x a day I had zero symptoms then all of a sudden 2 years ago I started getting horrible outbreaks like I never had before. I switched to valacyclovir 1g a day and it has helped, however, every month when I ovulate I start having horrible symptoms, burning, irritation, redness of the vagina. I take an extra 500mg of the meds during that time and nothing ever breaks through the skin but I’m so uncomfortable. I’m seeing my doctor Monday to check for a hormone imbalance. I have no idea what is going on. This virus is supposed to get better over time and for me its gotten so much worse. I also take 2-3000mg of Lysine a day and vitamins, eat well and exercise and get enough sleep. Makes no sense. I’m so scared to be intimate with my husband because I feel like a walking contagion and he is negative. Is your husband negative? Do you have typical outbreaks? Feel free to private message me if you want 🙂

@Sunshine75 I’m only 34yrs old, but, I have noticed that my vagina has not been lubricated as normal for the passed year and a half. Idk if it has to do with these symptoms or not. I saw my PC today and she couldn’t understand why this is happening monthly and said my OBGYN can test my hormones when I see him. She called in name brand Valtrex for me to see if my body will absorb that better instead of the generic. She also said some people have to take (2) 1gram pills a day to work and said to do that when I start feeling these symptoms. I feel like the doctors don’t know what to do or say except give textbook like answers. Theres so many new meds out there for all kinds of diseases but people with HSV haven’t had anything new in so long! So frustrating! I also have had a small, hard, white, bump the size of a needle head on my clitoral hood for a month. It doesn’t hurt and hasn’t changed in size. No idea what it is. I don’t think it’s herpes. I can’t help but think that from the years on the antivirals the virus has mutated or something or has become immune to the meds, but when I increase them the symptoms get better.

I just assume it’s an outbreak since it’s happening every month when I ovulate. I become very red and sometimes it looks like there may be something underneath my skin but it never breaks through and when I increase the antivirals for several days the symptoms will subside. When this happened back in January I went to my doctor and she did swab me for bacteria and it came back negative but when she looked down there she did not say it looked like an outbreak either so idk what’s going on but it is so incredibly frustrating 😒

I’m at my wits end with this virus and am looking for ANY insight on how to suppress it. I was diagnosed with GHSV in 2009, had “typical” outbreaks every few months and decided to go on suppressive therapy. I was on Acyclovir for 8 years and the only time I would get an outbreak, which was very mild, was when I was on birth control pills. That occurred every 3 months and was almost more of a yeast infection it felt like and would clear up in 3-5 days with adding another pill and monistat to my daily regimen. Once I stop BC pills I was outbreak free for 7 years. A few years ago I tried antidepressants to help with my depression and anxiety and after 2 weeks on those I got the most horrible outbreak of my life! I immediately stopped the antidepressants and every month since then I got God awful outbreaks which consisted of internal and external pain and itching, rawness, redness and swelling, much worse then the typical sore I would get when first diagnosed. All the while still on Acyclovir. After a year of this I switched to Valacyclovir 1g a day and have had a little better success, however, it is still almost every month during my ovulation week that I’m getting an outbreak. It’s not a sore that fills up with pus than scabs over, but discomfort, redness, irritation, certain areas of my vagina look raw, and inside looks raw. Is anyone experiencing the same thing? Any insight after all these years with the virus it cannot suppress itself? I’m a 34yr old femalep and the only other health problem I have is asthma. I eat well and exercise daily, no additional stress. This doesn’t make sense to me. Do the generic medications not work as well as the name brand? Would changing the dose to 500mg 2x a day help? I see my doctor a week from tomorrow but the last time I saw him he said you can sometimes become resistant to the meds, which I have read is VERY unlikely in a healthy person. And why is it when I get these outbreaks and I take an extra 500mg of the meds a day, within a week I am ok? Is anyone on a HIGH does of the antivirals? Should I see an infectious disease specialist? Could there be an underlying immune problem? Or hormone problem? This is all so frustrating and I am losing hope. Any insight is appreciated.

@Lvsandy Hi, yes I am on daily suppressive medication as I’m doing whatever I can to keep my husband safe (he does not have this) and we also use condoms occasionally. I’ve been on suppressive therapy for 9years but in the last year I switched from acyclovir 400mg 2x a day to valacyclovir 1g a day as the acyclovir was not working well anymore. The valacyclovir as helped but I still feel irritation each month normally during ovulation. I don't get a typical outbreak with a sore anymore, which it was better when I did. Now if I do it is AWFUL, worse than my first, so much internal pain and irritation. When I start to feel “off” I cut the 1g in half at night so I take an extra 500mg and am usually ok in a few days. But for some reason the medication is not suppressing the virus like it used to. I also take 2,000mg of Lysine daily, elderberry, zinc, vitamin c, cats claw and olive leaf which is also supposed to help. After almost 10yrs with the disease I thought I would have built up antibodies to keep this in check. What a crock of shit the medical journals are. My doctors wont even test me to see if its hsv 1 or 2 because they're “both the same” so all I know is that it comes out genitally. So frustrating. I see my doctor November 4th and I’m going to see if he’ll change the dose to 500mg 2x a day so it’s always in my system. That’s what they give to people with HIV or compromised immune systems. I do have asthma and am sick a lot but idk why things have been so bad with this. Definitely get on suppressive medication. May help you.

This virus is the fucking worst! I honestly think getting on suppressive therapy actually does something to the virus, like somehow makes it stronger so the meds start not working or you need to take an insane amount for them to work. These doctors need to get their shit together and try to find something to get this virus under control for people. I honestly don’t know what’s worse, the physical or mental suffering. I’ve doubled up on the lysine and vitamins and whenever I have “that feeling” I’ll take a half of the 1g Valcyclovir so I do a full gram in the morning and then half for a few days and then I’m ok for a few weeks. But anytime I feel a pain, or anything I fear the worse. I don’t ever remember having symptoms like this. I was going to see if changing how I take the medication, 500mg 2x a day, so its constantly in my system. Who knows what will work.

@Jck84 maybe call your dr for a course of antivirals...I’m currently sick right now too and feel like I’m about to have one, I’ve had this for about 10 years and it’s worse than ever and I don’t know why :/

Hi all, I’ve been taking 1g of valacyclovir a day since January but there are times where I feel like I’m about to get an outbreak. How should I be taking the medication during those times? I read 500mg 2x a day for 3 days...but will my doctor prescribe that to keep on hand for when that occurs? Can I cut the pills in half and take them like that? Is anyone on 1g of valacyclovir a day and still feeling like they’re on the verge of an outbreak? This has consumed my life in the past 2 years after being 8yrs outbreak free...

@Jck84 honestly idk if lysine helps or not, I take 2-4000mg of it a day along with antivirals and I feel like I’m in constant discomfort 😒

I feel like I’m in the same boat as you! I have genital hsv, don’t know if it’s type 1 or 2 because my doctors brush me off with the “its the same thing.” Anyway, I’ve had this for about 10 years now. I don’t even remember the first year and a half without suppressive meds being as bad as it is now WITH the meds. I was on acyclovir for 8 years and did not have any symptoms, I would get what felt like a yeast infection every 3 months right before my period when I was on the pill so I stopped the pill and never has those symptoms again. For the past almost 2 years now I have had constant pain, discomfort, irritation, redness, nerve twinges down there. I switched to valacylovir 1g a day and it has helped a little bit but I am still feeling the symptoms, it’s almost like I feel like I’m constantly on the verge of an outbreak but I don’t get typical sores. I’ve noticed during ovulation is when I feel the most discomfort inside my vagina (sorry if thats tmi). I really would love to know what is going on with my body. Everything you read and every doctor says that as the years go on your body suppresses this thing and you barely get outbreaks. All lies. If you go through this for him he will read more and more people are experiencing this. Let me know if you find a specialist. I’ve been debating on setting up an appointment with an infectious disease specialist because I’m at my wits end.

@Survivor I feel your pain! I was diagnosed in 2009, was on acyclovir for 8 years with no outbreaks or symptoms and then all of a sudden BAM, constant outbreaks that are far worse than any I had when I newly acquired the disease. I feel like I am in a constant state of irritation and discomfort and there are days where physically it hurts to walk or do anything. I have an 11yr old and an almost 6 yr old and I have to make up excuses as to why I don’t feel good and have to lay down all the time. It is so draining. I too am always tired and irritable, I get these “brain zaps” I guess you could call them and am always feeling like my head is foggy. All this even while on 1g of valacyclovir a day. I’ve had this for so long that I thought things were supposed to get better as your body builds immunity. I eat healthy and exercise regularly and nothing seems to help. I’m in a constant state of depression. My husband doesn’t have the virus and I’m so scared about passing it to him. I hope things get better for you !

Your post is so relatable and I feel your fucking pain! I’ve had genital hsv for about 10 years. I couldn’t tell you if its hsv 1 or hsv 2 because both my gyno and primary care doctor have said “it doesn’t matter which one because it’s the same thing.” But is it really the same thing? Like I would like to know what strain I have but they won’t do it. I honestly think these doctors don’t give a shit about helping people “like us” because the virus isn’t deadly. There hasn’t been any new drug developments against this since Valtrex came out in the 90s and it sucks. The physical and mental suffering from this virus in unimaginable. I wish I could honestly say it gets better. I was on acyclovir for 8 years, had ZERO outbreaks, no prodrome symptoms, then one day I had a HORRIBLE outbreak. Worse than I have ever had in my life. After that they kept coming every 2-3 weeks and seemed to be WORSE when taking the antivirals. I was also taking 3-4000mg of lysine daily, vitamins etc., all the bullshit the websites tell you to do and nothing helped. Finally went to my dr and asked for valtrex, which they only give the generic because these asshole insurance companies won’t cover name brand. It’s been about 7 months and things have gotten better but I feel like I am constantly about to get an outbreak. The stress of feeling this way prob makes it worse but when you are in constant discomfort how are you supposed to forget you have this thing and relax? Everything I read says over time your outbreaks will become leas because your body gets immune. What a crock of shit. I think everyone needs to band together and start an uproar. We need better treatment/medication/a vaccine against this/a cure. I’ve gone 10 years and idk how much longer I can take either.

This one is for the ladies. To make a long story short: after a horrible year of outbreaks (had genital hsv for about 10yes and was on acyclovir with NO outbreaks for 8 years then all of a sudden BAM, horrible monthly internal outbreaks) I switched my meds to 1g of valacyclovir. While it did seem to help I’ve felt that the prodrome symptoms are almost constant. A few months ago I started taking Culturelle Women’s Healthy Balance Probiotics which also promotes vaginal health. I swear the months where I religiously take these I feel so much better down below. Idk if it’s all in my head or not but I would suggest any women with genital hsv to add these to your regimen and see if it helps. Anyone have insight on this?

I’m hoping for a response soon! My pharmacy is refilling my meds with the Mylan brand this week and I am PRAYING for a much better outcome...

Hey!! Did you find out what brand you are taking now? I just had 6 good days after a week of a flare up and now I’m starting to feel like its happening all over again 😒 I’m calling my pharmacy to ask for the Mylan brand tomorrow. I cant deal with feeling like every other week I’m about to have an outbreak!

I just sent a message to my doctor asking for a prescription for name brand Valtrex. A few other websites that I have been looking on people have said that generic doesn’t work for them. At this point even if my insurance doesn’t want to cover name brand I will eat the money in order to get a better quality of life than I have right now. Does anyone know how likely it is to become immune I guess you would say to the medication? I thought that it was a really low rate for healthy individuals but it just does not make sense to me that the antivirals would stop working.

This is all so frustrating! @BassMaster99 can I ask you what manufacturer is making the valacyclovir you are taking? I have read some posts that people have been having problems with certain manufacturers and I wonder if that is the case. I know generic meds are supposed to be the same as the name brand but I’m wondering if the name brand works better. I was going to ask my pharmacy to change what brand they are giving me for a few months to see how it goes and if it’s the same constant irritation I’m going back to my dr to ask for name brand valtrex.