Eczema Herpeticum - Autoincoculation or is someone lying to me?

[JohnnyBadSkin]

I'm a male who has had eczema for years, frequently occuring on my groin, torso, back, underarms, back of knees, buttocks). I have had such bad attacks that I've had to see the dermatologist a handful of times throughout the years, but I've learned to manage it pretty well, (cold showers, moisturizing, no saunas).  About 2 months ago, I broke out with what I thought was an eczema rash on my crotch and lower torso, but it had some bumps on it. I had a single fat cold sore on my lip at the time, too. I went into a local dermatologist who gave me Triamcinolone Acetonide Cream.  A couple days later the cream seemed to make it worse, and I sick with flu like symptoms, and more cold sores appeared on my lip, around my mouth and chin. I went to another local doctor who took one look and it was eczema herpeticum, (or possibly molluscum conatagiousomething) and when he said it was EH = eczema + herpes, I started freaking out. He said he noticed my cold sores on my face and asked if I had sexual contact with anyone in the last month, but at 'herpes' my mind raced to 3 weeks before and I had been with a girl I was dating and intimate with, and though we were protected the two times before, this time the condom had split and rolled down. He also said I could have spread this from my mouth to my crotch and chest by touching my face and going to the bathroom, or scratching my eczema, and asked if i had cold sores before this, and I told him I was sure i hadn't.  I was sure it had to be the unprotected sexual contact, but I had been experiencing the same uncomfortable itchiness under my shirt and groin typical of my eczema. I also thought of shared cigarettes and drinks and applying lotion directly to my eczema providing a vector for body transfer of the virus. He took a blood test and swab of the lesions, in my chest and crotch, and gave me xerese, deoxycyclin, and valcyclovir.
I called up the person I had been with 3 weeks, before and told them what happened and said they should get tested and if they had been with anyone else recently, to which she became really defensive.  She said if she had it that she could have got it from me.  She later would tell me that she had in fact had other partners within the couple week before me and said she hadn't wore protection.  At this point I WAS SURE I had contracted this from her, and it got out of control from eczema, and perhaps I transferred from my mouth area from my genitals and not the other way around.
My tests came back positive for HSV1, and said that this was a more recent infection, and because it was from viral cultures on my crotch, that I now had genital HSV 1, which I had thought was supposed to only affect the mouth, but a quick google search disproves that. My 'partner' got tested and she claims she tested negative.  

Heres my ?'s

I don't know whether to believe her (or ask to see the tests, not classy but hey) because the whole self-transfer thing seems less likely given the fact that we were unprotected after she was with someone else unprotected.  

If she is asymptomatic maybe she has to wait longer to get an accurate test?  
Or could I honestly have contracted hsv1 on my genitals from a primary infection on my eczema? (the cold sores on my face started about the same time)
Also, how do I know if the virus has attached itself to the ganglion or whatever when it' contracted through eczema herpeticum, and does this mean I have hsv1 and can transmit this sexually (my doctor seemed to think so)?
Finally, can't be contracted genitally that way, does that mean I would have to have gotten it from her? (last person before her was 2.5 months before and was a long term monogamous relationship)

Any advice would help. I just feel hurt, confused, diseased, stupid and having trouble trusting what I'm hearing.

[elle903]

Hi Johnny!

It's a relief to see your posts online. I've just been through a very similar thing this past year with misdiangoses and the like and it's left me full of questions similar to your own.

If you get this could you please write back? I have so many questions and eczema herpeticum is so rare that few people seem to have answers - even dermatologists. I would love to talk to someone who has gone through this to know the answers to a lot of the questions you are asking - can it reoccur? Can I transmit? It's giving me a lot of heartache because I already feel my eczema is a barrier to initimacy and am dreading having this be a reoccuring thing now too.

Thank you,

Elle

[gracefromHHP]

best of luck moving forward :)

like I said, the tests don't pick up  on hsv1 as well as they do hsv2.  You know what you have and where you have it which is the info you need for future partners.

[JohnnyBadSkin]

Thanks, You're right about what matters now, and I am over thinking this.

it's not so much medical as it is just a trust thing (I have never seen her tests, I can only take her word on it, and she has avoided me since) which brings me back to the original post question.  

That's really why I'm trying to figure this out.  I had  a girlfriend for 5 years before I met this one, (no one in between, not even kissing), and I told her since my diagnosis and recommended her getting a test, which came back HSV negative, so I've been with two girls in the last 5 and a half years, and the only thing that I can't confirm is the new girl's results.  But I'm so sick of trying to figure it out and the stress of this stupid witch hunt and I hate the way I think of this new girl now and feel like I should just let it go.  I guess it doesn't change anything...

I accept your last post that it has to be from sex (likely oral), it just puts an implication on what I'm being told by my last partner (who maybe be betting that I have had too many partners to figure it out...)  

Thanks again.  And I'm not even gonna obsess anymore. Screw it, I don't care... gHSV1 is gHSV1, regardless of who or how or even the eczema complications, and your post settles it for me.  

Grace, thanks for the straight answers, you have no idea how valuable they are... I should have just asked if it could be from non-sexual contact at first and I think I would have saved both our time, and I'd still not be able to know.  I guess many people don't know how they got it, but I tried to be as responsible as I knew to be at the time with testing and being selective and such, so it was important to me to figure it out, but I'm so tired of it and I'm losing sleep, which can't be good either.  Thanks again.

[gracefromHHP]

did you get this from non-sexual contact? no you did not.

when and from whom is actually meaningless.  what is important is knowing what you have and where.  even the best tests still miss 1 out of every 10 hsv1 infections so hard to tell which partner it came from.  

don't over think this - it really isn't as complex as you are trying to.make it.

[JohnnyBadSkin]

Sorry that this is long, but I got some data, and it hasn't helped narrow anything down for me.

After two months of waiting, finally got my second blood results:
HSV1 + positive and
HSV2 - negative  

So I guess that's a relief in that it's out of it's zone of preference, and usually results in less outbreaks and asymptomatic shedding. (?) I hate the idea that my love is a liability.  
I guess it was a primary and I don't think I ever had cold sores before.

SO FINALLY, SOME ANSWERS, BUT MORE CONFUSION!!!

Without further blood work from my suspected giver, who got a test about a month after I first got symptoms and was negative for both types, I guess it is possible that I was innoculated with an eczema attack, sharing drinks and smoking cigarettes, and thoughtless scratching of my skin (which if you have eczema, you know it's almost an addiction to scratch and blast it with hot water in the shower, though both are bad for the skin).  

perhaps as the doctor initially said, when I told him that the person I was with was tested and clean before we had sex, (I didn't know at the time HSV was not on the standard test, though she had been with someone unprotected since the test, also unknown to me), i could have gotten it touching my shaft using the bathroom or scratching my eczema on my leg and trunk. (Which I had been doing because of the eczema 'outbreak'.) I thought the virus doesn't live outside the body, is that right?  

This is seriously a tricky ******* of a virus!!!! I just wish I could see a video of how and when it happened, from the virus's view.  I don't even know how I got it, given that the only person I was intimate with for a couple months before the outbreak didn't test for it, and the doctor said it was a 'true primary', meaning I had not had the virus previously. I had sex with someone but they didn't test for it, and I was thinking it may take time for the antibodies to show up in her system, but she would have had to have it before if I got it from her, so I figured she would test positive by now.

I mean, can you get it by touching a shared drink or cigarette and touching your lip? I got I have eczema and the skin is more susceptible to herpes infections (news to me, though I saw doctors for the last two years about it!), and it can spread from there (again, steroid cream seemed to help that, and I wish I didn't slather it on my crotch thinking it was the cure), but really?!!  How am I supposed to explain that to anyone? should I just say it was from oral sex and save my breath? This all sounds so ridiculous, and maybe it'd be simpler to blame a partner (though I wouldn't say her name or her specifically).

I almost laughed when my diagnosing doctor made a swirly gesture around the mouth and then pointed to his genitals while explaining the concept to me! Also, my 'reasonable' suspicions pretty much soured that possible relation, if the herpes didn't... Damnit.

I guess I'm asking if in your experience if you've heard of people getting HSV1 genitally without sex?  (sigh) I guess you gotta have chronic eczema in all the wrong places. I want to ask my former partner for another test for antibodies build up, though we haven't talked since she got her results and came to the conclusion that I'm a jerk, and also I don't think she would lie to me about this, but when I think of how rare self transfer must be, I wonder...

I have a feeling you'll say, you can't tell about how you got it, or if anyone is lying to you, you can only prepare for the future, but I want to know if this is possible? I guess I just want to let go of holding this suspicion.

[gracefromHHP]

unfortunately even the best blood tests still miss 1 out of every 10 hsv1 infections. no easy way to tell if either of you had it previously to help narrow down that part of this.

you should indeed be discussing your genital and oral herpes infections with future partners. the two of you can't make educated decisions about what precautions to take for sex/oral sex until you know who has what.

[JohnnyBadSkin]

I did not receive oral sex, but I did give it to her.  Perhaps I had had asymptomatic oral hsv1, and then got it when we had intercourse? (the first cold sores on face I ever noticed happened weeks later, pretty much at the same time that my eczema turned evil and wrecked havoc on my nether parts) and it was supposedly my primary infection due to the types of anti bodies, so wouldn't I have antibodies to protect me if I had had it for a while?

She still has tested negative for HSV1 and 2, but maybe she needs more time for it to show up.
I guess the eczema complicates things and I may never know, and I won't know what was most likely if or until she has a positive HSV 1 blood test.

I assume this is something that I will have to tell future partners?  I just wish I had an easy way of explaining this.

[gracefromHHP]

typically when it's hsv1 that is the cause of herpes eczema, it's usually on the upper body. usually you won't spread hsv1 from the oral area to other body parts once you've had it but the eczema unfortunately complicates things. did you have oral sex during the encounter in question too?

if you had a lesion culture in the genital area come back + for herpes, then you have genital herpes.   when your eczema flares up in the genital area, avoid sex until the skin is back to normal since a flare up can trigger herpes shedding regardless of type.

repeat your igg blood test 3 months post encounter for better answers.  it's really unfortunate that they didn't order your lesion culture typed :(

[JohnnyBadSkin]

Hey Grace, thanks for the response!

Let me answer your questions to help you help me.

My original swab, taken by at the second dermatologist (the first misdiagnosed me and gave me a topical steroid for eczema that aggravated the situation) for some reason was NOT type specific (I don't know why they didn't type) and they only told me I had HSV 1/2 antibodies, and they sent me to an infectious disease specialist. I thought this meant I had both but when I got the IgG blood work done at the specialist a couple weeks later, and said that I tested HSV2 negative and but definitely HSV1 positive, but that I should come back in for a second IgG just to make sure there that there is no conversion (meaning that there is still a chance I might have 2 also it but there isn't an adequate amount of antibodies developed yet to test) but he was confident that this was type 1 given the time since my primary. I will redo the test in a couple weeks just to be sure.

I was given a week of famciclovir and now I'm on the 1 gram blue valtrex pill, (twice a day, an elevated dose recommended by the specialist).
My widespread rash and lesions have cleared up on my torso and legs have cleared up (though i see pink scars left on my shaft and I'm worried those will last, any advice on that? aquaphor, bio oil etc?).

Thanks for concern, I will be seeing the specialist again for testing but I am cleared up, and I was made aware about how serious these two conditions are when put together.

I know it doesn't matter how, and from whom, I got this, but I do trust this girl and want to believe her. I don't even want to blame anyone anymore. I would like to know a few things, especially in regards to talking about this for future relationships that would help me understand and explain my situation.

1) If this is in fact HSV1 (and my partner tests negative again) could have really transferred from site to site on myself via touching my eczema with HSV1? Is that possible?!!
(obviously if I get a positive hsv2 test in a couple weeks, which would be two months after the primary infection, then that would have to have been through genital to genital contact)

2) Just because the lesions were on and around my groin (and stomach, side of torso), does that mean the virus is established in the ganglion and I that I have genital HSV1? Or could this just be a 'topical' infection and I don't have to worry about passing it on or recurring?

3) also, what are the concerns for gHSV1 specifically? I know it's out of it's zone of preference and it's supposed to be milder (not in my case) and less likely to recur or at least less often. I read it also sheds less than oral HSV1 and G HSV2, which is comforting but I know it depends on the person.  I also found this quote:

"Only about 25 percent of people with genital HSV- 1 shed any virus in the absence of symptoms, compared to 55 percent of people with HSV-2."

http://www.livestrong.com/article/49176-symptoms-type-genital-herpes/

that true?

4) Does eczema make me more likely to transmit? I know it made me more susceptible to infection, but does it go the other way around?

Sorry, it's a whole range of questions, but I really want to know so that I am able to educate and protect any future partners.

[gracefromHHP]

odds are that your prior partner has never been tested for herpes.   if this is an ex partner, what is important is knowing what you have and where for future relationships more than who you got this from and when.

just to be clear, your lesion culture was hsv1+ or just your blood tests were? if you aren't real sure yourself, if you can get a copy of your test results to post here, that would help me help you a lot better.

I recommend you also see a dermatologist as soon as you can. eczema and herpes don't mix well and it can be  health risk so you should be seen and follow up better on this with the dermatologist.  Using topical steroids for the eczema can also also make herpes worse so abstaining from using them for your eczema until you can see the dermatologist isn't a bad idea either.  Not trying to scare you, trying to make sure you get the best help possible!! If they don't have saturday appointments, call monday and let them know why you need seen asap.

what dose of valtrex were you given?

grace