All Over????

[there is a reason]

Hi, I'm new to this forum, but I've been diagnosed for about 8 years. Everything was under control and going well until this past year. Now, I'm looking for help because for the past 4 months I have had herpes symptoms that come and go all over. I have had eye lesions, conjunctivitis, sores inside my lip, throat, on my gums, genital as well. I have even had a lacy rash on my side. I have been on Valtrex, and it definitely helps (when I have reduced the dose everything gets worse), but it isn't going away. It feels like herpes, looks like herpes, but the doctors keep saying it couldn't be. Anyone else heard of this experience? Any hopeful words???? I am trying very hard to be positive, but this is scarry!

[Claudia]

I'm sorry to hear you are having all of these symptoms. It sounds very, very uncomfortable and frustrating.

Do you have a history of eczema? You might ask a doctor about herpes herpeticum.

[there is a reason]

thank you

Thank you for your kind response, Claudia. No, its not an eczema kind of thing. I do have sensitive skin, but it doesn't seem to be cause by that.

Maybe if I give a little more info: Essentially, I have lesions anywhere herpes likes to go. I have a few on my eyelid, one's that no one could see unless I show them thank goodness, but they are there and periodically my eyelid will burn. Last month I had 4 bouts of conjunctivitis, went to opthamologist who said it was likely herpetic and he was glad I was on valtrex. I also have intermittent swelling of my lower lip and mild kinds of lesions throughout my mouth and gums that kind of come and go. They are not bad enough to impact my eating, but I know there are there and that is very bothersome. Then, I have genital soreness and periodic bumps. I also have some sorness on my side that comes and goes and that is where I have just a lacy kind of rash. On my side was where I used to get lesions when I first was diagnosed - and yes, it was hsv2.

So, it all seems to be herpes, but no doctor will admit that. They say it couldn't be, but it can, I know it can and that scares the crap out of me. My tests do keep coming back negative though, perhaps because I am on the valtrex.

I can't get it to go away and have had this to varying degress since July. I read one post on another board of someone who had something similar, but that post was from long ago and the person long gone.

I don't mean to scare anyone who is coping with this, this is NOT typical! I don't know what is going on with my body. I know I was run down, but I have been trying to eat well and avoid certain foods, I am seeing a WONDERFUL therapist (I recommend therapy to anyone who feels they need support and has insurance), and I have been very prayerful and feel more connected to the Lord than ever. But, it seems nothing is working. I want to explore a nutritionist, but Lysine didn't help, maybe made things worse. I am trying to make my diet more alkaline. I don't know what else to do.

I would love to hear from someone who had a long outbreak that finally went away or someone who had multiple locations. I welcome comments from anyone who just wants to say hang in there, it will get better. I try to stay in that frame of mind.

[lilanne19]

I have heard of cases where herpes spread throughout the entire body but those cases are usually so severe that they require hospitalization.

What you're going through sounds just devastating, have you thought of going to an infectious disease doctor? Maybe they can help? If herpes is actually spreading throughout your entire body that would definitely be something that you should confirm. Even though it's extremely rare it does happen. I hope you feel better soon.

[MovingBackwards]

Hey,

Keep going, don't give up. People are here for you. You also seem to have a positive attitude and that will eventually win over the condition itself. If you feel yourself slipping with regards to your outlook, always remind yourself that we are here and fighting along with you.

About your condition, I am really sorry that it is now affecting you in this way. If I had any experience like it I would relay the treatment, but I don't know. Hopefully somebody knows a little bit more.

Feel better, there is a reason.

[there is a reason]

hanging in there

Hi, thank you guys so much for responding, this site is incredibly helpful and empowering. It is so nice to remember there are lots of others dealing with this nasty bug and there is always hope.

I have been to infectious disease doctor and he was not helpful at all. I encouraged him to refer me to an endocrinologist because I wonder if part of this is hormonal. That's one thing I do think folks should look into if the outbreaks are really bad. So, I am now waiting for the endocrine results, hoping and praying there is a reason for this that can be helped. I had been breastfeeding my daughter and just stopped 2 months ago because of all of this. She was old enough so it was ok. But, that's why I wanted to check hormones. Funny, the best I ever felt was when I was pregnant with my son..... not sure what hormones that would be, maybe some extra testosterone??? Anyway, we will all get through this, eh?

[BoxofRain]

hey there, i have had a "rash" in my whole pubic hair region, alternating with or coinciding with cuts around my butt and have had this on my skin continuously for 2 1/2 years at this point........when i first went in they said they had no clue what my rash was, never seen anything like it,....but tested me just as a precaution for herpes....got positive blood test for type 2.......so since then i have always had the rash and cuts come and go every few days.....then rash flares down for a day or two and then back and present on the skin for weeks....followed by 1 or 2 day reprieve and then pattern continues identically always........docs. all want to say it cant be herpes because "herpes doesnt act this way" well, it does in some and can and i am proof of that and sounds like you are too......a handful of other people on here describe non typical scenarios like ours so i truly believe it is the herpes.....there is no other explanation. I am sorry you are going through this.......i too have tried a bunch of things and nothing has worked ever........keep you head up....i do believe everything happens for a reason....even this horrible way we are experiencing having herpes.......... there has to be a reason or a lesson or something that is happening to make us stronger or different as people. Dont loose hope.....you are not alone....people out there like myself understand what it is like to have herpes in a non typical manner and it is truly hell sometimes but there is so much beauty in this world and life is not just about our physical state of being so try and stay positive....i know its not easy at all.....but please know someone out here understands..... pm me if you ever want to talk.

[helied2me]

BoxofRain, I certainly didn't want to hear that! Just when I thought this OB mught give up soon, I read your post. I was infected mid-September, my OB started 2 weeks later. Started out with tiny cuts that weren't even visible around my anus, what appeared to be hemorroids and a lesion on the labia. 2 weeks later that looked and felt better and then I started getting cuts and a tiny lesion or 2 in the labia, clitoris area. I just got the test results today for type 2 and it was negative but I had it done at the 7 week mark and that was apparently too early. My number was 0.08<.90 but I know it's there. I'm finding it very hard to be positive about anything but this damn virus!

[MovingBackwards]

Yes, we will all get through this. Very simply. Even though everything is affected, Work, Family, Leisure, we will get through it and become stronger. Keep this in mind. Always.

I say this for you, myself, and everybody who reads this. There will be strength and resilience at the end when acceptance comes. Look to the experienced posters, and see how they respond, how much they have already gone through. They are our examples as well.

Feel better and best regards.