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Avatar universal

Constant Neurological Problems from Genital Herpes

4 months ago I had an unprotected one night stand with a girl who afterwards told me she had genital herpes but that she was on suppressive therapy with Famvir. About 24 hours later I started to get burning in my thighs. Since then I've had some combination of the following symptoms constantly (they change by day or even by hour) (i) pain in my lower back, (ii) a burning painful tingling down the back of my left leg, (iii) a dull pain in my left buttocks and both heels and (iv) most bothersome, involuntary muscle twitching (fasciculations) in both calves and sometimes in the hamstrings (this does not occur when I'm standing and started around week 8 post-exposure). I've never had any visible "outbreaks" or problems with my genitals. I know herpes is causing my symptoms due to the timing.

Three weeks ago I went to my PCP, told him what happened and got a Herpes Select test and it came back positive for both HSV 1 and 2. As my PCP isn't a specialist he was baffled by my "atypical" symptoms and presentation. Upon my insistence, he put me on suppressive acyclovir(400 mg twice a day) but he said he wouldn't recommend it because I get no lesions.  The acyclovir hasn't helped with my symptoms.

My questions- have you ever seen genital herpes present itself with my neurological/pain symptoms? If so, will my symptoms ever go away or am I stuck with these extremely annoying fasciculations and other symptoms forever? Can I take anything to get rid of my symptoms and fasciculations?  I will see an infect. dis. spec but wanted your input first - what do recommend? Thanks.
13 Responses
239123 tn?1267651214
MEDICAL PROFESSIONAL
See other posts about the problems in interpreting HerpeSelect HSV-2 tests in the presence of a postive result for HSV-1.  Make sure your HSV-2 result was strongly positive (ELISA ratio >3.0); if not, you might not have HSV-2 after all.

But if you are HSV-2 positive, I doubt you acquired it in the encounter you describe, or that HSV-2 explains your neurological symptoms.  You might have had HSV-2 for a long time, with the currrent problem entirely coincidental, not related either to herpes or to your sexual exposure.  The lack of response to acyclovir is further evidence that your symptoms aren't due to herpes.

Good luck--  HHH, MD
Avatar universal
As a follow-up, can you recommend an infectuous disease specialist in Pittsburgh, PA that I should see?  Thanks.
239123 tn?1267651214
MEDICAL PROFESSIONAL
I don't make named referrals on line.  A good bet would be Pittsburgh University school of medicine, or a medical center affiliated with it.  There are excellent STD experts at Pitt, including people who are respected herpes researchers; the ones I know are in gynecology, but they might see men, or you could rely on their recommendation.

HHH, MD
79258 tn?1190634010
"(i) pain in my lower back, (ii) a burning painful tingling down the back of my left leg, (iii) a dull pain in my left buttocks and both heels"

Maybe it's completely unrelated to herpes, and actually a musculoskeletal issue. These symptoms sound more to me like sciatica. Or, it could be referred pain from trigger points in your gluteus minimus or piriformis muscles. I'd ask your doctor about these possibilities :-)
Avatar universal
Thanks - I'll certainly try to get the name of one of the Herpes researchers at Pitt.  But my ELISA Ratio was in fact strongly positive - I think it was in the neighborhood of 9.  And I'm virtually certain that's how I acquired it - she had a bad cold that day which could have produced shedding I'm guessing - and that's when ALL of my problems started.

In your experience, have you seen HSV-2 cause benign fasciculation syndrome and other types of intractable pain? Since the virus resides in the nerve ganglia, it seems to make sense to me.  Could it also produce an autoimmune disorder?  for instance, is it possible that in some people the immune system malfunctions and mistakenly attacks ALL the nerves in the body thinking it is attacking the herpes virus. This in turn would wear away the protective sheath around the nerves, and allow electrical signals to pass through when they shouldn't be....hence the random muscle twitching/hyper-excitable nerves?

I truly appreciate your thoughtful and help input.
Avatar universal
First of all, I am not a doctor so I am not claiming to  diagnose ...however, I did want to say that I also have many of the same symptoms, except I do not have pain in my calves or heels (my shooting pain is limited to the buttocks & back of upper thigh-although I do have twitching in my calve muscle which I never had before). My symptoms started a couple of weeks after exposure. I have read similiar posts on other web sites about others going thru the same thing. I just wanted you to know because the medical profession claims that is not a connection..but then why are so many people (H+ people) having these almost exact same symptoms? I am going to keep doing research as I think there is still much to learn about this virus...just my take on it all.
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