herpes virus with incontinence and valtrex tolerqnce build up

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Hi All,

I am new to this group. My son is 15 yrs old. he always broke out in the herpes simplex 1 ( non sexual type) since he was 18 mths of age. we do not know how he contacted it but was told it could have been anywhere i.e. shopping cart at grocery store. he had it in his eye and in cluster on lower back, face and neck. At 13 years old he had a breakout then shortly became urinary incontinent. no bladder sensation whatsover. millions of tests at childrens hospital and Mass General nothing came out positve. they wanted it considered a psych case even thoough the pschologists in the case did not view it as pschological. Every time I manage to get an appt with a specialist my pedi primary care doctor would go behind my back and cancel it. My son was out of school for 5 months. Depends did not work. he would use the bathroom on an hourly basis and still have an accident shortly after. during one hopital stay I convinced the doctors to try iv steroids

as I had seen in one case study. It seemed to reduce the symptoms but they returned shortly after the steroids were stopped. one adult urologist said valtrex and iv steroids should have been tried so one attacked the virus and the other attacked the inflammation. doctors would not listen to this.I manage to sneak to see an infectious desease doctor who prescribed valtrex. I monitored the number of accidents with the 3000mg per day and they slowly went away. but every time we reduce the drug he becomes incontinent again. last year he was out of school 2 months. strangely last sept he broke out on 1850 mg of valtrex became incontinent, introduce 60 mg per day of prednisone and raised the valtrex back to 2750 mg per day and he regained bladder sensation in 5 days. but then a month ago he broke out on 2750 mg of valtrex and is now incontinent. redid the prednisone for 10 days which reduced the number of accidents but did not regain

bladder sensation. I am now told there is nothing else to do for my son. that he is supposed to "deal" with it. He cant go to school. he has been gone to another state for hypobaric oxygen therapy which is supposed to kill the herpes virus. so far no luck - still no bladder sensation .i have him on 5000mg of lysine per day plus other antioxidants.

Sorry this is so long but has anyone else dealt with bladder incontinence with herpes and building up a tolerance to valtrex which it appears he is doing. I gereatly appreciate any thoughts or experiences.I am so worried about my son getting very depressed with this happening to him for the 4th time.

thank you very much

mary