Sensitivity loss related to genital herpes

[seemsserene]

My name is Greg and I suffer from what I believe are complications
relating to a herpes infection in 1991.  I have been experiencing genital
sensitivity loss since then, and it has increased over time.  I am
somewhat desperate at this point and am in a search for answers which has
brought me to a number of doctors across the country, none of whom have been
able to give me what I am hoping for, which is a way to reverse the
symptoms.  Other than my herpes infection, I am in perfect health, and am 36
years old.  I do not take any drugs other than acyclovir, 400 mg five times
daily, which was the recommendation of my doctor, the idea being to stamp
out the possibility of the virus being active on the skin, to give the
nerves a chance to heal.  This dosage long term seems to be excessive to me, but I do not know what else to do other than follow what doctors have told me.

I read with interest the passages from the book Understanding Herpes
(revised 2nd edition) that I have retyped below. I believe
myself to be one of the "rare cases" Dr. Stanberry (the author) references.  I have written to him without response.  I am wondering why there is no information on the web about cases like me, but more importantly, I am wondering what is
actually going on?  The passages in the book are the first concrete
reference I have found to this issue.  Has the virus killed my nerves, or
simply damaged them?  Is there a way to reverse this?  Are the nerves
undamaged and simply suppressed?

Its been 16 years and the symptoms have slowly gotten worse, not better. I
am wondering where I might find more information that supports what I have
going on.  Most importantly, I want to be in touch with doctors who have
seen and treated patients with sensitivity loss (preferrably male patients),
with success, or the patients themselves.  I am very much in need of
regaining my sensitivity and want to know what I can do myself to initiate
that healing.  My life has suffered as a result of not having my sense of
feeling for so long.  And like I said, the symptoms are slowly getting
worse, and I am very scared.

I look forward very much to any replies from people who have experienced what I have, or from medical professionals who can give me good advice about reversing these symptoms.  I am willing to try anything.  I thank you in advance for
taking the time to contact me, which you may do directly anytime at seemsserene (at) gmail (dot) com.

thank you,
greg

"Because herpes simplex viruses can invade nerve cells, infection with
these viruses can cause nerves to stop working properly.  It is common for
patients with first episode genital herpes to have changes in sensitivity to
touch or pain in aor around the genitals.  Some people experience increased
sensitivity so that light touch causes tremendous pain.  Others have
decreased sensitivity or lose sensation entirely in certain areas, which
include the lower back, the sacrum or tailbone area, the perineum, the small
triangular region between the thighs that includes the rectal opening and
the vulva or the base of the penis.  In some people the nerve injury can
also cause constipation or problems urinating, and, in some men, it can
cause temporary impotence.  For the vast majority of people these
complications resolve completely within a few weeks.
    Most people completely recover from these complications, although there
are rare patients who have neurological problems for years following their
first episode of genital herpes."

[gracefromHHP]

you also posted this on webmd. I've pointed your post out to Terri to answer over there so hopefully she does soon. I recommend posting this here on HHH's board and not here on the patient to patient board.  You are in an atypical situation and professional help would be more valuable.  I have a few opinions on your situation but I don't feel comfortable talking about them until the professionals have commented.  

grace