LAST EDITED ON Jun-17-11 AT 11:58 PM (CDST)
I am a 29 year old man experiencing fluctuating lumbosacral and peripheral neuralgia, which seems to stem from a reinfection/superinfection of genital HSV-1 (I have had oral HSV-1 since childhood). Yes, it is possible to be reinfected with another strain of HSV-1 again in your genital area, although its not very common. I have taken about eight "top quality" type specific blood tests for HSV-2 spread out over ten months after the date of possible transmission (and I don't know if that person had anything - and I don't want to ask her, I just highly suspect it because of when the symptoms started). These HSV-2 tests have all been negative, far under the lower 1.1 limit for testing positive. That more or less means I can rule out HSV-2 (although I know in extreme cases seroconversion never happens or can take even longer). As many of you here, I am dumbfounded by the lack of professional knowledge about PHN due to herpes simplex. However, I have done plenty of research on my own and at least been able to find some doctors that seem open to the possibility that this could be the case here, although none of them have seemed too convinced. My inner thigh pain is getting better, as well as my pain in my legs/buttocks/feet and the more rare sensations of pain in my armpits and hands. I can still feel waves of slight pain in my boxer region and legs several times per week and some days constantly, but its a "mild" pain, so I can handle it. It's now almost a year since the possible transmission date, so there's hope. It's going the right way.
Of course, my medications are helping me a lot. Some doses are low and some are higher. I am currently on a daily cocktail of 1000 mg of Valtrex (500 mg in the morning and 500 mg at night), 2000 mg of Lysine (1000 mg in the morning and 1000 mg at night), 20 mg of Amitriptyline (10 mg in the morning and 10 mg at night) and then also 300-600 mg of Gabapentin during the day, depending on the pain level. I have checked with several doctors that it's ok to take this much Valtrex and Lysine daily and I plan to continue with this cocktail for years to come and maybe modify the doses when needed. I also do yoga and run a few times per week, drink lots of water, take extra minerals and vitamins and long hot baths and showers. Combined, the medicines and this lifestyle is making this problem bearable - and I also believe that the pain is subsiding slowly on its own, on top of all this.
I have seen a neurologist during the past year that is more or less oblivious when it comes to PHN due to herpes simplex, but she has tested me for every. other. disease. that could create symptoms similar to those I'm having, and I'm completely healthy (or so it seems). Many messages about PHN here on the forum scream of desperation and depression, where people are seeing doctor after doctor, year after year, looking for answers, in vain. So my question is directed to the most "ambitious" of those people: is it in my current situation really worth it to continue searching for answers, trying out new doctors and doing possible complex procedures to investigate this further - or not? Again, I do not know for sure if this is even due to herpes simplex and all other tests show there's nothing wrong with me (although something is definitely going on). I will take more HSV-2 tests in the future, but in the meantime I feel that I might not be able to do much more than what I've done so far.
Even the people here that have met doctors that do know a lot about this problem, still seem to end up in the same situation with the same issues as before. So, it just seems to make more sense to accept this for now and continue with my medication, exercise, yoga and healthy living instead of spending hundreds of hours and thousands of dollars on trying to find doctors that can say that they believe my pain stems from herpes simplex with absolute certainty and that put me through expensive and time consuming tests, just to leave me in the exact same situation as before. I have spent so much time and money on this over the last year - and with no disrespect to anyone here - I simply don't want this to take over my life completely and make me in to a bitter and disillusioned person. I'm striving for acceptance and a level of that acceptance has already started to appear within me. I want that feeling to continue.
I'm grateful for any recommendations. Are there things I haven't thought about? Can you direct me to resources and/or priceworthy doctors that can provide advice that can improve my situation further? Has anyone else here thought about the possibility of having a strain of HSV that is not detectable, or having genital shingles? Please feel free to say anything. I know it might seem paradoxical to both want to know more and hope that I don't need to look for more information, but I think you can relate to my ambivalence. And also, I know that misery loves company, but try to be objective in your advice. I wish you all the best in your struggle.