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Constant Neurological Problems from Genital Herpes
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The STD Forum is intended only for questions and support pertaining to sexually transmitted diseases other than HIV/AIDS, including chlamydia, gonorrhea, syphilis, human papillomavirus, genital warts, trichomonas, other vaginal infections, nongonoccal urethritis (NGU), cervicitis, molluscum contagiosum, chancroid, and pelvic inflammatory disease (PID). All questions will be answered by H. Hunter Handsfield, M.D. or Edward W Hook, MD.

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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.
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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
9 Comments
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As a follow-up, can you recommend an infectuous disease specialist in Pittsburgh, PA that I should see?  Thanks.
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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
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"(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 :-)
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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.
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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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There are millions upon millions of people with herpes in the USA alone, that means there are ineviteably many people with herpes who will suffer from other conditions unrelated to herpes.  I'll bet that there are thousands of people who have started going bald or have gained weight after contracting herpes, does that mean that hair loss and weight gain can be attributed to herpes? Obviously not!  Trust the professional medical experts (like Dr H.H.H) who study herpes on a massive scale, researching the ins and outs of it for years.  They truly know what effect herpes has on the body, as opposed to laypeople people who read vague info online about herpes causing "leg and buttocks pain" and automatically attribute any twitch and tingle to herpes.  The beliefs of a handful of people doesnt hold water in comparison to the multitude of research studies into the effects of herpes!!

PS.  As a side note, id like to thatnk you Dr H.H.H., if you recall, i posted a few weeks back about an iffy blood test that i took in mexico (which you told me wasnt an accurate one).  I followed up with a Western Blot in Canada a few weeks ago (over 1 year past exposure) and it came back negative for HSV2!!  Thanks again for all the help!!
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Nicco:  So you clearly have HSV-2, but I still don't think your symptoms are due to herpes, regardless of the timing of onset; nor do I think you acquired herpes from the exposure you described.

nicknamegirl:  It may be true that "so many people with herpes" have otherwise unexplained neurological symptoms.  See the comment that follows yours, from hoping2005; s/he is exactly right.  No research has ever shown that such syndromes are any more common in people with and without evidence of HSV-2 infection.  The necessary study would randomly select people with and without such symptoms and see if there is a difference in how many in each group had positive HerpeSelect tests.  My guess is that in fact it wouldn't be any different; but we'll never know unless/until such research is done.

hoping2005:  We agree.  Good show.

HHH, MD
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Avatar_n_tn
I'm not a doctor, but could it be IBS causing the leg and butt pain?  I think irritable bowel syndrome is linked to anxiety and can trigger sciatica. If you have been stressing about all this and your colon is churning, it may put pressure on nerves & cause pain in legs.
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I have had herpes for 2-years now... I aswell get random twiches from time-to-time. A good cure for typical pain and  duration of the outbreak --for me anyway-- has been smoking cannabis in an indica dominant strain type.

When I start feeling the burn and itching sensation--I smoke approx .3 grams of cannabis and the pain goes away with-in a few minutes. Also, it seems to decrease the duration of the outbreak by a few days.  The twitching decreases aswell.

I will be testing further-more with cannabis base oil (hemp oil) in a very potent form and apply directly on the affected area (my penis). It has cured cancer (hemp oil); so why not give it a try on this?

Talk to you Dr., Before you try any "unorthodox treatment".
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Avatar_f_tn
I have an itch between my right thigh and genitals, calf twitches, swolen lymph-nodes eyelid eyebrow twitches, abdominal pressure, headaches, and ino for 1 thing I am very stressed and depressed what do you belive this to be
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A related discussion, can herpes cause muscle twiches after 8 yrs was started.
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A related discussion, Neuralgia pain was started.
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