Continuous prodrome?

[desertflower]

I am a 39 year old woman and have had genital herpes for 10 years. I contracted it from my husband, when we first met, and had a very severe primary reaction, resulting in me not being able to urinate for a week (I was hopsitalised) and had a fever, lots of aches and pains. They diagnosed the herpes and said I had positive titer levels (?)   After that, I suffered approx. 6 or 7 outbreaks per year. Then 6 years ago I developed continuous pins and needles in my feet and aches in my legs that would come and go but this wasn't necessarily linked to any outbreaks of blisters. (In fact the actual blisters decreased in number.) I began to notice that I would become very lethargic, irritable and in pain around these times. I was seen by a neurologist since my Dr thought that maybe I had MS. The picture seemed to fit. I would have periods of almost being unable to function due to tiredness but the most awful symptom was the weird tingling, burning, pins and needles in my legs and in my genital area. There were areas of numbness. Also, if I closed my eyes, I couldn't tell where my legs where, which was a very frightening feeling. I  kept a diary and it seemed that the symptoms were worse when I was tired, (which was most of the time since I had twins four years ago, after having two lots of IVF which was stressful!), when I had my period, after I'd taken a bath or got very hot.... (we've unfortunately had to move to the southwest for my husband's job so the heat isn't helping!)
I had many many tests, MRIs, blood tests, EMG studies, all of which were normal. The neurologist thought that I had "peripheral neuropathy" but didn't know why. I was getting fed up with always feeling "under the weather' and with weird neurological symptoms adn just thought that I would have to alwats live like this.
About three months ago, I just happened to mention to my husband that it was "as if I was having a constant attack of herpes without  actually getting the blisters"...that got me thinking. Could it be that this is exactly what is going on? Can the nerves be always inflammed? Can you get the prodrome type symptoms all the time and then have the blisters now and again . I guess I have the blisters break out about every couple of months and the prodrome is much more intense and specific when it does. I'm sorry for my very long post. I guess i just wanted to ask if you thought it worth me seeing my Dr and asking to try some acyclovir suppression medication to see if it helps this constant pins and needles/tingling. I feel that what is there to loose in trying? It seems to actually all make sense to me that herpes could be the underlying cause , esp. if it's in the sacral spine somewhere.
Thank you so much for reading all this and sorry it's so long. I would just like to know if i'm on to something or if the Drs are right and they really don't know what's wrong with me ...they haven't taken much notice when I've said I have herpes.

[H. Hunter Handsfield, M.D.]

Some people believe that symptoms like yours might sometimes be attributable to herpes; indeed some individuals are absolutely convinced that it explains their symptoms.  However, herpes doesn't normally behave that way, and there is no proof of herpes as the cause.  Most herpes experts, infectious diseases specialists, and neurologists don't believe there is an associaton, which undoubtedly is why your docs haven't "taken much notice". A quarter of the population has HSV-2 (with or without recognized genital herpes, and a smaller proportion, but still millions, have unexplained neurological symptoms like yours.  Therefore, most such cases probably are just by chance, i.e. people happen to have both conditions with no relationship between them.  To my knowledge, there are no case reports that proved the association was causal; for example, none that showed a definitive response to antiherpetic therapy.

That said, the antiherpetic drugs are benign, with virtually no side effects. As you say, there probably is nothing to lose in giving it a try, with a regimen such as acyclovir or valacyclovir for 10 days or so.  If herpes is the cause, you should experience a dramatic improvement within a few days.  But please don't get your hopes up.  I predict it will have no effect.

Good luck--  HHH, MD

[desertflower]

Thanks for your reply. Maybe I was hoping for a miraculous relief from my symptoms by taking a simple medication;  if only life was that straight forward! I may discuss what you have said with my doctor and see if he thinks a 10 day course might be at least worth a try. In the meantime, life goes on and I guess we each just have to make the very best of what we have and try not to dwell too much on the negative. Thanks again.