31 years w/Herpes

I was dx w/vaginal herpes in 1975. Since that time my outbreaks have changed in character and location. I do not have blisters in my vulva region. Now I feel the virus originates within my anus sending a searing pain down my leg, either right or left. My leg has even swollen from the thigh down before. I begin feeling very lethargic for several days; then the familiar tingling in my anus and ensuing pain begins. I have had similar pain originating from my spine traveling around my rib cage causing intense pain. I am HIV free having been tested regularly. I work in healthcare and have been exposed to who knows what. Is it possible that my virus has morphed to this new area? Should I go on palliative Valtrex? Has there been any research with IVIG and herpes? Thank-you for your assistance.

[H. Hunter Handsfield, M.D.]

The first thing you need to do is get reevaluated by a herpes knowledgeable health care provider.  It is uncommon for people to continue to have symptomatic recurrent outbreaks for 30+ years.  In those who do, the symptoms continue more or less unchanged both in character (blisters etc) and location--often with decreasing frequency, but no other change.  My guess is that your herpes truly "burned out" around the time you stopped having typical vulvar recurrences and that something else, unrelated to herpes, explains your present symptoms--which are not particularly suggestive of HSV, regardless of what you might have seen on the web or heard elsewhere.

I am unaware of immunue globulin (IVIG or any other variation) as a treatment for herpes, but even considering it is premature pending diagnosis of your problem.  Given your past history, conceivably your provider might recommend trying suppressive therapy for 2-3 months with Valtrex or one of the other anti-herpetic drugs, to see if it affects your symptoms.  I doubt that it will.

I hope this helps.  Best wishes--  HHH, MD

[E.K.]

I have never written to a forum before, but thought it important I do so in this case. I have had recurring herpes outbreaks since 1967--on average four or five times a year, sometimes only twice or so, but never less than that. Probably a total of 200 outbreaks. They have appeared in several locations and seem to "burn out" one before they start on another: Vaginal, lower back, anal, outer thigh, inner thigh. My most recent and most painful outbreak was in my inner ear and I dread another one.

Doctor after doctor has told me it was highly unlikely my outbreaks were herpes, even though the appearance--and most importantly the all-too-familiar feelings--were the same. However, upon testing, the outbreaks were, in fact, shown to be herpes. My current physician said she had never heard of such repeated outbreaks, in so many locations, over so many years, however she has my medical records to prove it. She sent me to another specialist when she saw the outbreak in my ear canal--and it was verified by that doctor as herpes.

I have read that such outbreaks lessen in severity. That is not at all the case for me. If anything, the pain, aching and lethargy ahead of time are worse now than ever before. Valtrex is not covered by my insurance, but Zovirax upsets my stomach terribly, so I opt to may the hundred and fifty dollars or more for Valtrex, when I need it. I feel that it helps shorten the life of the outbreak, though it does nothing for the pain. Nothing helps the pain!

I'm not writing to depress anyone, and I know most physicians would answer as this one did, in perfectly good faith. But when you know this disease like long-term sufferers do, you know it's not a short-term inconvenience isolated in one area. It can move around and feel excruciatingly painful year after year. I have learned to know the feelings and start on pain medication as soon as possible. Perhaps one day something will be found to help, but sadly I don't think I'll benefit much from it by then!

[penguin24]

A related discussion, life span of herpes and foods associated with outbreaks was started.