Sensitivity loss due to genital herpes? FOLLOWUP QUESTION

[seemsserene]

HH: I want to thank you for your response this past July about my genital sensitivity loss. Since then, I've seen two neurologists: Dr. Gary Stobbe (Minor and James Medical) and Dr. Todd Czartowski (Swedish).  Stobbe ordered a lumbar MRI which was normal, an interpretation confirmed by Dr. Czartowski.  Czartowski felt that herpes was the issue.  He could offer no awareness of other possible factors.  He suggested 400mg 5x/day of acyclovir in hopes that the suppression of the virus might give the nerves a chance to heal.  Stobbe agreed. Czartowski said that the condition, which has increased in intensity over time, was likely the result of not being on acyclovir before last year.  I have had less than ten genital outbreaks in the last fifteen years and did not realize that taking anti-virals was essential. I've also consulted with Dr. William Steers (urologist at the Univ. Of Virginia with a specialty in unusual urological conditions).  He pointed me to neurology too saying that the issue wasnt urological.  Dr. Rakita in Infectious Diseases at Virginia Mason said last week that herpes "seemed to be" the only likely cause.

I am extremely confused. If its not herpes, what is going on with me and who can I talk to about it? If this IS herpes, and if herpes is supposedly so benign, why am i suffering from this? I no longer can enjoy sex very much, even via masturbation.  I have done my due diligence with doctors nationwide and am at a loss of what to do next. Its getting worse even with the acyclovir, so i am inclined to agree with you that its not herpes related.  The drug affected my outbreaks but not the progression of my sensitivity loss. I am Western Blot HSV2+, HSV1-. A zoster test was negative. People ask me occasionally: I do not regularly ride a bike.

Who do I turn to next?  You suggested neurology: which neurologist?  What branch of medicine do I turn to next for help, or how do I approach any of the branches I have already turned to for more information?

[H. Hunter Handsfield, M.D.]

I will just repeat what I probably said in your original thread (which I have not re-read):   HSV generally does not cause ongoing, persistent neurological symptoms; I have never heard of it causing persistent "reduced sensation" of the genital area; and because 25% of the population has positive HSV-2 blood test, of course a lot of people have various symptoms plus HSV-2 infection, with the association being nothing more than random.  When antiherpetic therapy makes no difference in someone's symptoms, that is further evidence against herpes as the cause.  Note that these are generalized statements, not a judgment about your particular case.  For that you need to rely on the highly skilled specialists you have seen.

[seemsserene]

While I recognize that you have no cure or solution, might you clarify something?  You won't second guess Dr. Rakita.  Does that mean that you agree that herpes might be the cause or do you think it is possible that it is NOT herpes?  I am trying to at least figure out what it isnt so I can start figuring out what it is.

[H. Hunter Handsfield, M.D.]

Sorry, I have no further comment or advice.  This is well outside an STD expert's realm.  You have seen excellent neurology and infectious disease consultants.  They are the ones to go to with additional concerns or questions.  I will not second guess what Dr. Rakita means by "seemed to be".  You may wish to consider seeing a psychologist or other counselor with expertise in sexual behavior to deal with the sexual satisfaction problem, which also is outside my expertise.

Best wishes--   HHH, MD