Possible Rare Case of Oral HSV-2 from Autoinoculation

[LovesDogs]

I masturbated, touched the original site of my HSV-2 contracted 14 years ago from my husband, then touched my lips forgetting to be careful about HSV. No active outbreak at the time but was having frequent vaginal outbreaks and almost constant prodrome due to a divorce and being severely run down. Within a week I had tingling on my lips and swollen lumpy mucosa inside my lower lip often forming a white "ridge". This has occurred almost constantly for 6 months with only a week or 2 break in between. Valtrex 500mg made it go down, but not away. I saw 3 doctors: regular, derm., and inf. disease; but did not have the swollen mucosa "ridge" when they saw me.  All said herpes could only be on outside of lips.  On my own, I tried Valtrex 1g and the ridge receded a lot within 8 hours.  My gut says it's HSV-2, but I need a doctor who is an HSV-2 expert to help.  I am severely depressed because I can never kiss anyone again or even my child casually on the cheek. Please help me find someone in SF Bay Area to diagnose this for sure and help me get it under control.  I am devastated that I did this to myself.

[H. Hunter Handsfield, M.D.]

The mouth symptoms you have cannot be herpes.  Just as for genital herpes, oral herpes causes periodic outbreaks, usually 1-2 weeks in duration, followed by complete healing; and then may recur.  In other words, if you had oral herpes, whether due to HSV-1 or HSV-2, it would mimic the sort of symptoms you probably have had with your genital herpes.  Continuous symptoms for 6 months cannot be herpes.  On top of all that, autoinoculation is rare in people with recurrent HSV infections, which you seem to already know.  On balance, I am certain your 'gut' is wrong and that herpes does not explain your oral symptoms.

Your primary care provider should be able to handle this issue, or can suggest referral to an appropriate specialist.  Or ask your dentist.  Alternatively, since you are in a city with sophisticated medical services, consider seeking an oral medicine specialist.  Oral medicine is a subspecialty of dentistry, and I'm pretty sure there is an oral medicine department at the UCSF dental school and probably also at Stanford.  Or your dentist can refer you to an oral medicine specialist.

In the meantime,

[LovesDogs]

Thank you for your reassurance, Dr. H.  I will contact an oral medicine specialist as soon as possible. It looked like your comments were cut off on the site after you typed, "In the meantime. . ."  so I could not see it. What were you going to say? Some further info:  my ex-husband, who passed HSV-2 to me years ago, spread it somehow to his chin (shaving cut?) after he had HSV-2 for 5 years and then to his tailbone region years after that.  Both areas presented like typical herpes, but only the chin was cultured and verified to be HSV-2.  Could this be an atypical virulent strain that he passed to me?  My original vaginal site seldom breaks out in blisters, but feels tingly with mild neuralgia all the time.  If autoinoculation occurs rarely, that means there must be a few documented cases, correct? Also, at the same time I have the lip tingling and intraoral swelling, I have pain and blurred vision in one eye.  An opthalmalogist found no evidence of HSV, but said it could be sub-clinical.  Should I start kissing my family again without being panicked about passing something incurable along or wait until I see an oral medicine specialist?  Thanks in advance for your advice.

[H. Hunter Handsfield, M.D.]

"In the meantime" was supposed to be followed by "you can be certain that herpes does not explain your oral symptoms." None of the additional symptoms you describe suggests herpes either. And no, there are no "particularly virulent" strains of HSV-2 that would explain such atypical symptoms.

Probably you misunderstood the ophthalmologist; I cannot imagine an opthalmologist actually believing that "sub-clinical" ocular herpes exists or that it could be causing your symptoms.

I never guarantee that anybody isn't infected, but I see no reason you cannot safely kiss your family members.

[LovesDogs]

Why was my ex-husband able to spread herpes to his chin after he had genital herpes for 5 years?  It was cultured and found to be type 2.  Also, this weekend my mouth started acting up again and this time I have little red dot like sores on the inside of my cheeks and my throat is sore.  This occurred after the strange white ridge disappeared when I took the 1g of Valtrex a few days ago.  I only took the 1g one day and the red dot sores appeared when I quit.  Are there any documented cases of intra-oral HSV-2?  Would the oral medicine dentists know the proper tests to give me in order  to rule it out?

[monkeyflower]

I remember reading about HIV positive men shedding HSV2 orally during genital outbreaks, or something like that. If so, is that due to being immunocompromised, or is that potentially a common occurrence for anyone with genital HSV2? In other words, is it possible that her ex was just experiencing a symptomatic oral HSV2 outbreak? Or am I just making all that up, lol?

Loves dogs: You seem very anxious about having herpes, so I'm guessing you're hyper-aware of all genital (and now oral) symptoms. Since it's not herpes, what have your doctors said about them?

[gracefromHHP]

monkeyflower - sounds like you are referring to anna wald's study from the journa of sti's 2004 - oral shedding of hsv2.   I believe lafferty's article also reported something similar but it's too early in the morning for me to reread lafferty for the 100th time.    I never did make heads or tails of the Wald article to be honest.  What they reported and what they concluded never made sense to me but that doesn't say much since it doesn't take much to confuse me sometimes.

So how could your hubby get hsv2 on his facial area later on? The nicks and cuts of shaving can create open portals into the body for the virus to enter.  Most of the time it's not an issue and certainly your husband is the exception to the norm but it can happen. Sometimes your body is worn down doing other things and the not supposed to happen does happen. I"ve been online for many years now doing herpes support and education and I still only need 1 hand to count all the folks I"ve heard this happening to.  It really is that uncommon. As HHH already pointed out - you don' t have some superstrain of hsv - your husband has badluck is what is boils down to.  What is going on in your own body could be many, many things and without culturing and a further work up you won't figure it out easily on your own.  I wouldn't count the fact that it appeared to get better when you upped your valtrex dose as meaning much of anything to be honest.

grace

[LovesDogs]

I guess my main issue is that no one (I've been to 5 doctors and my dentist) will culture the sores and tell me for sure what it is.  My dentist said it could be constant outbreaks of canker sores. There are incidents all over the internet about intra-oral HSV-2, but there is no way to prove that these are true.  I just find it odd that I never had problems like this for the 14 years I had genital herpes and then suddenly after masturbating and probably touching my lips which were chapped from cold weather, I get tons of lip tingling with sores on the inside of my cheeks and lips and occasionally a minor sore on the actual lip.  This is always accompanied by eye pain on one side, too.  I never had cold sores as a child either.  Also, I am so frightened of kissing someone (either casually or intimately) and then finding out it is herpes by them catching it from me.  I am a very responsible person and could not live with myself if this happened.  I know that herpes is basically a harmless rash, but the social stigma is hugely blown out of proportion in society, even worse than HIV in many ways.  If I tell anyone early in the dating process that I may have oral herpes, my guess is that they would run screaming in the opposite direction.  If I am only contagious genitally, I can let the relationship develop for a lengthier time before breaking the news.

[Hopefulforhelp]

I'm sorry to hear of your troubles. I am in a similar position. I am positive for HSV2 via blood test, but never a positive culture. All I ever get is tingling and burning sensations below, yet orally I'm a mess. From tingling/ burning lips, acne and rashes on my nose, to what 'looks to be herpes' (told to me by an STD nurse) occasionally on the corner of my mouth.

I took Valtrex for almost a year after I was first diagnosed. I Had a huge blistering zit on my lip initially that sent me running to the clinic. That tested negative, but my blood test came back positive. Even the nurses were shocked. The guy I was with was negative. I now know when I caught it and from who. The only thing I can come up with is that I had herpes below and it was transferred about by him. My face was fine while on the Valtrex. Since I've stopped it, wham... not fine anymore. It's never been as bad as the first flare up, but it's obnoxious.

I have been to doctors ranging from general practitioners all the way up to an HIV expert that specializes in Herpes. Many, including the specialist, actually told me I don't even have herpes, I've merely been exposed. Right. I can't imagine ever telling someone, 'Oh so sorry I gave this to you, 'they' said I was merely exposed'.

The best I can say is try a STD clinic. You can find them through your local health department. They will culture anything you are concerned about. For a while I was running there every month or so. Nothing ever came back positive. Sadly, they (at least mine) do not make appointments and waiting around half a day is hardly convenient. Problem with herpes is testing time. So, Do I have it? Do I have it orally? I don't know how/ if I'll ever find out with certainty. Maybe all my symptoms are nothing, maybe they are hormonal or aging related. Wish I could know for sure.

What really peeves me off is the lack of ability to truely know that leaves people like us in an anxious state about even so much as kissing someone. Worse off, I'm convinced I gave it to my son prior to finding out I was infected. Afterall, if type one can be passed by a simple kiss, why not type 2 ?

HSV2 was previously thought to be impossible or at best rare. My opinion is that so many people had type 1 orally and that the two viruses can't reside in the same location, few did actually get it. I never had type 1... at this point, I wish I did at least that is socially acceptable. As far as autoinoculation, I'm confused. "They' say it only happens in the primary infection at best. I had it for 8 months prior to (what I believe) the transfer to my oral area. I've also met people that have actually transferred it to themselves in odd locations as well. So, how much is really certain?

Dr H, MonkeyFlower... I'm pretty sure you both will say I don't or it's unlikely I have it orally. However, Is there any home testing studies that people like us can get involved with? Afterall, HSV2 orally is possible, therefore, wouldn't it be better to know for sure rather than for us to believe that it is so rare it couldnt possibly happen to us and in turn pass it on?!?

Hope this isn't considered thread jumping, as that is not my intention.

Good luck LovesDogs and try the clinics. Know you're not alone!