August 13, 2015 at 11:44 am #8807worriedsick75Participant
Thanks so much in advance for your reply.
Some background info:
I’m 38 and female and contracted oral HSV in grade school and genital HSV in high school…20+ years ago. I’ve never known which type(s) I have where, but from all I’ve learned about the types, I’m suspecting oral HSV1 and genital HSV2. A recent IgG test in June confirmed the following: HSV1: 8.7 and HSV2: 9.6. Until recently I’ve had very few oral outbreaks – none past high school that I can recall – but for over 20 years my genital/sacral outbreaks have been frequent and often severe – usually 12 or more a year. Also until recently I’d rarely taken ongoing antivirals to suppress my outbreaks – only during my 3 pregnancies to prevent transmission during childbirth, and on a few other occasions.
Beginning in March 2015, I started having even more severe genital/sacral outbreaks. I was getting 1-3 new lesions every week, for 5-6 weeks straight. While this was going on, sometime in early April I also started feeling facial numbness, burning and tingling in my cheek and lips that went on for about 10 days. These symptoms continued to get more localized to a particular region on my lip until one day I woke up with a small pimple-like lesion in the exact spot of the tingling/burning/numbness. It was not a cluster or fluid-filled like my original oral HSV lesions were 20 years ago, but a single, small pimple that just itched, scabbed and healed within 3-4 days. That was 4 months ago and while these symptoms are getting milder, they’ve been almost continuous with only a 1-2 day break every couple of weeks. Since early April I’ve had 5-6 other definite “lesions” of this same pimply nature (not fluid-filled and not blistery or clustered) either on my lips or lip borders or in the corners of my mouth. In the last 2 weeks the tingling, numbness and itchiness (not as much burning as with my lips) has spread to my nose and I’ve had at least 1 definite pimple-like lesion crop up in the exact location of the tingling under my nostril. Like the other lesions, it’s not fluid-filled and it heals within about 3 days.
In late April at my request, my doctor prescribed 400/mg acyclovir 2x/day for ongoing suppression of my outbreaks. While these have significantly reduced my genital symptoms (only 1 mild outbreak in 4 months instead of my usual 4-5), the acyclovir seems to do nothing for my oral symptoms. In June my doctor checked my blood for an underlying auto-immune disease or inflammatory markers but didn’t see any indicators, ordered the igG test (results mentioned above and below) and also did a PCR swab of an oral lesion but it came back negative for both HSV 1 and 2 (though the lesion was small and a day old and I was on antivirals). My doctor hasn’t been able to provide an alternative explanation to my symptoms, nor have I found anything in my own research/extensive googling that might point to something else. I’m not on any other medication besides acyclovir and I haven’t started using any new supplements or body care products that might point to an allergic reaction.
Not knowing whether this is type 1 or 2 (if either), I’m terrified that I’m contagious and that I might infect my loved ones. So terrified in fact that I really don’t want to go off the acyclovir long enough to get a PCR swab again, even though I know that’s probably what you’ll advise. 🙂 Meanwhile I’ve been abstaining from kissing or sharing food/drinks with my children, husband and others. My husband and I have always used protection for sex and although he hasn’t been tested, he’s never had any HSV symptoms whatsoever. We’re completely monogamous in case that’s helpful to know.
All that said, here are my questions:
1) In your experience do my oral symptoms sound like HSV (atypical presentation or otherwise), and if not, do you have any idea what it *might* be? I realize HSV doesn’t usually express itself so continuously for months on end, but since I was having continuous genital/sacral outbreaks in the 6 weeks leading up to these oral symptoms, I don’t think HSV is behaving normally in my body to begin with…
2) If it does possibly sound like oral HSV to you, would it likely be type 1 presenting itself with these tiny pimple-like lesions (even though I had the more “classic” lesions – clustered and fluid-filled during my initial outbreaks 20+ years ago), or could the pimples indicate a different strain of either type 1 or 2? Note that even before I started acyclovir the lip lesions were pimple-like – they haven’t changed in appearance (or frequency, really) since I started the daily acyclovir regimen.
3) I don’t know much about igG values but I’ve seen some people in HSV forums have numbers well into the 50-60s – are mine kind of low for a 20+ year infection and *might* that indicate why I have such frequent genital outbreaks (and orally, if my oral symptoms are indeed HSV related)? My igG values again: HSV1: 8.7 and HSV2: 9.6.
4) Am I a mutant?
Thank you, Terri.
August 14, 2015 at 12:35 pm #8819Terri WarrenKeymaster
I think you know what I think – that you do need to take five days off the acyclovir to find out if these little pimple like things area herpes to be swabbed by PCR. To me, the fact that they don’t respond to herpes medication, that they are tiny and pimple like, that they don’t change much in appearance and that they are mostly continuous, make them sound very much unlike herpes.
The index values have nothing to do with frequency of recurrences.
You are not a mutant 😉
I think there is no risk to the people you come in contact with if you go off meds, honestly.
Have you had a dentist look at your mouth pimples?
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