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Octobergirl

Devastated by HSV2 dx

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Octobergirl

Last month I was diagnosed with HSV2. I am crushed and overwhelmed. I am 41 years old. I spent 9 years in a lousy marriage and have been divorced for 3 years. I met someone special 6 months ago and things had been going great. Better than I ever expected and I truly thought I was going to have a second chance at a happy life, marriage and children.

Last month I spent the weekend with my boyfriend and he was itching at himself a bit, to the point where I had to ask what his problem was. He thought he had a bit of a rash from our intercourse. Which sometimes happens. We didn't think anything else of it. Continued on with intercourse for the weekend (including oral). A week later I had severe issues down below and went to the doctor, where much to my disbelief she proclaims I have herpes. Now, I have been reading a lot of things online and trying to sort out what is what. I've had a blood test and both tests they did were negative at the time. I am sure that will change because the swab was positive. My boyfriend got blood tested as well and he is negative too. The lesion on him was healing, so the swab was negative. We're both getting the blood testing done again next month.

I went through a very long initial breakout down below. I've been on Valtrex and Lysine ever since. It seemed to take forever for things to clear up and once they did I got my first cold sore on my upper lip last week. I was so traumatized, I couldn't even go to work. I am feeling like a mess and extremely depressed. I feel like my life is over. I keep reading about all of the things I should NOT eat because of the high L-arginine content....and it just happens to be everything I eat and drink on a daily basis. I was borderline vegetarian. Making a lot of nut milks and cutting dairy out of my diet. I made smoothies nearly every night with what appears to be incredibly high arginine content items: blueberries, maca powder, cashew milk, protein powder. I have NO idea what to do. I don't know what to eat and I can't stop crying.

I had been working out and I can't even seem to get the energy to do that anymore. I am afraid I am going to jeopardize my relationship with my acute depression. There are no support groups in my area. I can't tell any of my friends. I feel like I am going downhill. I don't know how to make peace with this issue. I feel like a leper. Any advice would be appreciated. Because I am completely lost.

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djtaucher

Hey octobergirl. There is no reason to be upset over an HSV diagnosis. I have cold sores on my lips, and I can tell you that the severity of the outbreaks WILL PROBABLY LESSEN over the years. You will probably start to feel so much better about all this. You are in a relationship with someone who has HSV, which means now you both have it, and there is no worry of spreading it. it seems like the end of the world. But it is just a minor skin condition. A SKIN CONDITION. NOT CANCER. NOT MS. NOT HIV/AIDS. NOT A TUMOR. Just a reoccuring skin condition that lives in your nervous system 80-95% of the time. That's remarkable, isn't it? As time goes on you will forget you have it.

Right now, calm down. take some "me" time. Think about your life and how you will not let it be ruined by HSV. It does not own you, control you, or do anything but bother you a few times a month/year. I get breakouts every year or two. And they are so minor.

You will survive. You will come out happier, stronger, and more amazing.

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Octobergirl

I can't help but be upset. Like I said in my previous post...all his tests turned up negative. However, I still believe he is the one I caught this nasty virus from. I know it isn't cancer and I am sure someone who has cancer would certainly trade places with me, but I am completely thrown off the course I was on. I don't know what to EAT or whether my partner is safe having intercourse with me. We were trying to have a baby too and now I wonder if we should continue to try?? I just don't know.

I don't have anyone to talk to about this. I can't talk to my friends. I don't think I even know ANYONE who gets cold sores, let alone full blown genital herpes. I am confused also because I am taking 1000 mg of Valtrex AND Lysine and I still ended up with a cold sore on my lip. I feel disgusting and completely alone.

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noring

I know how you are feeling. I too have no one to talk to about this. This site has been extremely helpful. Also, if you want to find someone in your area check around this site because there are many others who post where they are from and you might be surprised to find someone near. I jus did a search of my state. There is no one close to me but you wont know til you look.

I wish I could personally say things get better...im not so sure myself. I thought I was doin ok but now its about a month after diagnosis and I find myself crying all too often again.

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non stop guy

Sorry your going through this.I think the whole argine/lysine thing is at best over rated.good luck

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Octobergirl

Thanks non stop guy...this really sucks and I want to gain control back over my life. It is funny how quickly you can allow things to go haywire.

Noring - I am right there with you. I am up one day and down then next. I felt somewhat okay yesterday and today not so good. I just want this crap to stop for awhile. I don't know what's an OB or what isn't anymore. I am stuck with it up top and down below and can't bear the thought of it on my face and going to work. At least when it's down 'there' you can hide it and how hideous you feel.

I don't want to touch myself, I don't want to touch others. ugh. There has got to be some way to live a normal life again.

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Number7
I can't help but be upset. Like I said in my previous post...all his tests turned up negative. However, I still believe he is the one I caught this nasty virus from. I know it isn't cancer and I am sure someone who has cancer would certainly trade places with me, but I am completely thrown off the course I was on. I don't know what to EAT or whether my partner is safe having intercourse with me. We were trying to have a baby too and now I wonder if we should continue to try?? I just don't know.

I don't have anyone to talk to about this. I can't talk to my friends. I don't think I even know ANYONE who gets cold sores, let alone full blown genital herpes. I am confused also because I am taking 1000 mg of Valtrex AND Lysine and I still ended up with a cold sore on my lip. I feel disgusting and completely alone.

Octobergirl -- was your culture positive for hsv1 or hsv2?

I had the same experience as you---where he tested negative and me positive. I hope things get better for you.

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noring

Octobergirl, Im not sure what an OB is or isnt either. I dont really get symptoms (so far and hopefully not in the foreseeable future). I have never spent so much time checking myself out 'down there'. Not even positive I knew exactly how it looked before HSV so how the h am I supposed to know what might be different now lol. But, I am so fearful of passing it on to anyone that I want to know specifically when I might be having the OB. Since right now I cant tell...I dont feel comfortable ever having sex.

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Octobergirl

Number 7

The culture was positive for HSV-2.

Are you still with your partner? I love my guy beyond words and I know, if it came from him, that he had no idea he has it. The thing that convinced me was that I had a cold sore for the first time in my life last week, right on my lip and I have something going on in my mouth in two spots right now...no idea what, but I am guessing it's related...anyway I am convinced because I gave him oral. The thing that is kind of driving me crazy is that we BOTH blood tested negative....so even if we had decided to do all the STD testing before being intimate it still wouldn't have mattered. Nevermind the fact that HSV testing is not included in the "standard" STD testing.

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Octobergirl
Octobergirl, Im not sure what an OB is or isnt either. I dont really get symptoms (so far and hopefully not in the foreseeable future). I have never spent so much time checking myself out 'down there'. Not even positive I knew exactly how it looked before HSV so how the h am I supposed to know what might be different now lol. But, I am so fearful of passing it on to anyone that I want to know specifically when I might be having the OB. Since right now I cant tell...I dont feel comfortable ever having sex.

I can tell you I sure had a wake up call with my first OB, it was the most painful thing in a sensitive area....then when the cold sore came it was red with tiny little bumps. I must have caught it pretty quickly with abreva (I had bought a tube "just in case") and doubling up on Valtrex and Lysine because it never actually blistered, but it was still pretty ugly.

I will tell you one thing...I checked myself out pretty good down below and didn't see any blisters or overt redness, no itching either and even though I was extremely fearful, my partner and I were intimate...we used a condom...and that went a long way towards me feeling semi normal again...and this nearly two months after my initial OB and diagnosis. He is fully aware of the situation and although I believe it originated from him I would never want to re-infect him if that's possible.

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Number7
Number 7

The culture was positive for HSV-2.

Are you still with your partner? I love my guy beyond words and I know, if it came from him, that he had no idea he has it. The thing that convinced me was that I had a cold sore for the first time in my life last week, right on my lip and I have something going on in my mouth in two spots right now...no idea what, but I am guessing it's related...anyway I am convinced because I gave him oral. The thing that is kind of driving me crazy is that we BOTH blood tested negative....so even if we had decided to do all the STD testing before being intimate it still wouldn't have mattered. Nevermind the fact that HSV testing is not included in the "standard" STD testing.

Unfortunately - he took off--believing he did not have it because of his negative testing. I also had something on the corner of my mouth (with tingling) that I never had before plus red spots that appeared on my chest. I believe I acquired hsv2 in both areas. My outbreak was classic --- fever, blisters, pain urinating, headache, leg and back pain and when my o/b started to subside, I had another one and had to refill my valtrex. I've continued to get o/b's -- never as bad as the first but I never had the symptoms I continue to have now before I was with him.

I'd be interested to see how future testing comes out for the two of you. Have you tried different types of blood testing .. i.e., Elisa vs the Immunoblot....or even a Biokit?

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Octobergirl

I am sorry he took off....that doesn't help what you are going though.

Yes, mine was a classic initial OB as well. I was so confused and when the doctor said those words I just crumpled. Today I had to come home from work because something is happening on my face, covering most of my left cheek and under my nose. I have a doctor's appointment soon. I am hoping and praying it's not another OB. It just keeps happening...

I am interested in the future testing as well. I've never had anything like this happen before and there were plenty of occasions when it could have...plus I used to consume a lot of L-Arginine and now I've had to really cut back because I keep hearing that it wakes the virus and helps it grow.

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Number7
I am sorry he took off....that doesn't help what you are going though.

Yes, mine was a classic initial OB as well. I was so confused and when the doctor said those words I just crumpled. Today I had to come home from work because something is happening on my face, covering most of my left cheek and under my nose. I have a doctor's appointment soon. I am hoping and praying it's not another OB. It just keeps happening...

I am interested in the future testing as well. I've never had anything like this happen before and there were plenty of occasions when it could have...plus I used to consume a lot of L-Arginine and now I've had to really cut back because I keep hearing that it wakes the virus and helps it grow.

Is it a rash or bumps? Do you feel any sensation with it?

So sorry you are having to experience this. Please keep us posted on what the doctor thinks. You might want to see a dermatologist rather than a regular doctor.

Did your outbreak happen within days of having sex with your partner or did it come out of the blue?

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Octobergirl

I just got back from the doctor a couple of hours ago and apparently I am having an allergic reaction to something (probably myself lol) but nothing related to H.

My OB happened within a week of intercourse with my partner.

I really don't want this to take over my life and I am bound and determined to figure out a way to keep my chin up and be happy again...but reading all of these posts and seeing how many people are dealing with this every day is truly disheartening....it shouldn't be like this :( although I have to keep reminding myself that it could be worse.

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Number7
I just got back from the doctor a couple of hours ago and apparently I am having an allergic reaction to something (probably myself lol) but nothing related to H.

My OB happened within a week of intercourse with my partner.

I really don't want this to take over my life and I am bound and determined to figure out a way to keep my chin up and be happy again...but reading all of these posts and seeing how many people are dealing with this every day is truly disheartening....it shouldn't be like this :( although I have to keep reminding myself that it could be worse.

I very strong believe, Octobergirl, that it's like this because of the stigma. The stigma is because the "experts" will not admit that they truly do not know enough about this virus. More people have this virus then I think anyone can even imagine. I believe people don't test positive when they have this because they just do not show antibodies on the current testing. I believe that people that have hsv1 all their lives and acquire hsv2 are mostly the ones that do not show the antibodies because of their existing lifelong antibodies interfering.

I hope that someday soon they will come out with better testing but I do not see it in the near future. It's all about "money" in the end. They can make more money selling the antivirals as long as people feel they have to take them to protect others from getting a virus they probably already have. There's a lot of other things I can say but most importantly---I want someone that's as loving, caring and accepting as I am---I just haven't found it yet but believe someday I will.

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Octobergirl

Yes, I agree with you and I have also been thinking that some people, for whatever reason, don't develop antibodies because maybe their symptoms are so slight and OB's so minor and they don't need them and then of course they don't know they are carriers of the virus.

Of course it is about money, how sad is that?! I normally don't like to take any kind of drugs, but for now, until I decide how to deal with myself, I will continue to take Valtrex for the short term. I had no idea so many people had this. It's unfortunate you have to "catch" the virus to understand that it is of epidemic porpotions, but because it is not a life threatening epidemic in most cases, and it is making them money, why develop a cure (or vaccination for that matter)?

I didn't think I would ever find someone after my divorce 3 years ago and I did not have HSV back then. I finally found who I have been looking for and he is the kindest, most caring and understanding person I could hope for. You will find someone! There are so many people out there and sometimes stepping outside of your comfort zone is what it takes. I read this quote from a book years ago and I have never forgotten it: One step and then the Next gets you where you're going.

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Number7
Yes, I agree with you and I have also been thinking that some people, for whatever reason, don't develop antibodies because maybe their symptoms are so slight and OB's so minor and they don't need them and then of course they don't know they are carriers of the virus.

Of course it is about money, how sad is that?! I normally don't like to take any kind of drugs, but for now, until I decide how to deal with myself, I will continue to take Valtrex for the short term. I had no idea so many people had this. It's unfortunate you have to "catch" the virus to understand that it is of epidemic porpotions, but because it is not a life threatening epidemic in most cases, and it is making them money, why develop a cure (or vaccination for that matter)?

I didn't think I would ever find someone after my divorce 3 years ago and I did not have HSV back then. I finally found who I have been looking for and he is the kindest, most caring and understanding person I could hope for. You will find someone! There are so many people out there and sometimes stepping outside of your comfort zone is what it takes. I read this quote from a book years ago and I have never forgotten it: One step and then the Next gets you where you're going.

I, like you, do not like to take meds. I did take Valtrex with my first and second o/b. I then only took it for a few days when I felt one coming on that seemed like it was going to be bad. Little by little, I hardly take it. The only thing that really bothers me is that it can make me really tired sometimes (almost like I did back when I used to have my periods). I can deal with the uncomfortableness but it's hard to do the things I love during the time I am so tired.

So happy - Octobergirl - that you are not dealing with this alone.

Sounds like you found someone.............like you!!

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Octobergirl

Have you ever done any yoga? I've been doing it for about 7 years now. When I was having the worst of the muscle and body aches I did some power yoga and I swear I did not ache again after that. It also helps with my tiredness. I used to be tired all the time (before H and yoga) and I now have much more energy. It is my lifesaver.

Thank you for the kind words Number 7, my bf is very supportive. I am sad that he gave it to me, but don't hold it against him because he had no idea. H is more binding than a wedding ring and can also tear everything apart if you let it.

Take care of yourself.

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Number7
Have you ever done any yoga? I've been doing it for about 7 years now. When I was having the worst of the muscle and body aches I did some power yoga and I swear I did not ache again after that. It also helps with my tiredness. I used to be tired all the time (before H and yoga) and I now have much more energy. It is my lifesaver.

Thank you for the kind words Number 7, my bf is very supportive. I am sad that he gave it to me, but don't hold it against him because he had no idea. H is more binding than a wedding ring and can also tear everything apart if you let it.

Take care of yourself.

thanks - you take care also.

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    • Artfulsoul
      Thanks for your story.  It seems similar to mine. Fortunately for you it seems your boyfriend is willing to pursue some kind of understanding. Since I wrote about what happened to me, my boyfriend broke up with me. The ironic thing is he told me this happened to him about 15 years ago with another woman. He said it was very traumatic for him and felt like the same thing once again. So it seems he had been exposed before and could very possibly have already been carrying the virus. Perhaps he knew and didn't tell me. I am really not sure but the relationship is over for now since he won't discuss it with me. So much fear information and confusion out there about the virus. I don't think they really understand how it happens so they tell everyone to be careful. Even having the virus it has been such a non-issue in my life until now that it appears there is so much stigma around it. It seems more like it is the Pharmaceutical companies wanting to make money off a common virus that affects so many on such a deep level, receiving love and physical contact.  Feels like a big scam to me.  The information was so different when there were no drugs to reduce or suppress the virus. It is all very confusing to me.
    • doh!
      I don't have hsv1 (2 instead) but yes, it is posssible to have an ob without the usual syptoms- or to miss more subtle signals. in my exprience said ob is mild (ie not painful).
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      Private message me please.
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    • Lilhurp
      Also I’ve had them heal and come back almost immediately. Waiting for culture test results. These are the only symptoms I’ve experienced 
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