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PostPosted: Thu Aug 02, 2012 5:31 pm 

Joined: Wed Jan 13, 2010 4:12 pm
Posts: 4
Location: Oakland
Years ago after a sexual encounter I experienced intense discomfort (fiery/tingly feeling) in the inner thighs and pubic area for two weeks, followed by two shorter less intense episodes over the next 6 months. Since then I have had mild fleeting recurrences a couple of times a year with generalized cool menthol/camphor-like feelings throughout that same area and some small spots that ache. I have never had blistering, but sometimes a skin tag in the area becomes enflamed and is a locus of discomfort. 


I have tested negative for both HSV1 and HSV2 by HerpeSelect IgG and also by Western Blot.

-- If this is not herpes, what else might it be?

-- Per Westover Heights, 3%
of IgG tests return false negatives. If I fall into that group, are there other tests for rare strains of HSV that are not included in the regular tests?

Thank you!


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PostPosted: Fri Aug 03, 2012 4:09 pm 

Joined: Mon Feb 05, 2007 11:47 am
Posts: 5443
Location: PA
it would be unusual to have these sorts of symptoms and not have obvious lesions. combined with your multiple negative tests, really no reason to think that herpes is the cause.

have you seen a neurologist at all yet?

betsy

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PostPosted: Tue Aug 07, 2012 9:18 pm 

Joined: Wed Jan 13, 2010 4:12 pm
Posts: 4
Location: Oakland
Yes, I saw a neurologist a couple of years ago but it turned out to be a dead end. When he heard why I had been referred to him he said he thought I was in the wrong place, but would go ahead and give me a standard neurological exam. He didn't find anything wrong.

I'm concluding several things from the evidence (please correct me if I'm wrong):
1. The condition was acquired through skin to skin contact.
2. The condition is caused by an infectious agent (the three successively milder outbreaks suggesting the immune system building up antibodies).
3. The condition affects the same network of nerves that HSV2 generally does.
4. The combination of sensations without lesions is unusual and therefore could be caused by a mutation or other virus in the same family.

My woman friend (who is a medical librarian) found this reference at NIH which describes an HSV-2 mutation which Western Blot cannot detect, but which "R1" can detect:
http://www.ncbi.nlm.nih.gov/pubmed?term=bapat%20grill%20nutter

I am hoping to find information about such variants/mutations and what testing is available to find them. My regular health providers are treating Western Blot as the final word -- and don't seem to have any other avenues for pursuing diagnosis.

Thanks for your help!


Thank


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PostPosted: Wed Aug 08, 2012 10:43 am 

Joined: Mon Feb 05, 2007 11:47 am
Posts: 5443
Location: PA
Just neuralgia and no obvious lesions isn't typical at all. really no reason to think this is herpes.

I recommend seeing a different neurologist and leaving out the sex part of it all when you go so that they don't get tunnel vision like the other one apparently did :( probably just a coincidence since there aren't std's that cause these symptoms.

betsy

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