Confusing diagnosis or rather lack there of.. please help..

[Sunbeam1920]

Hello. About 4 years ago I started having extremely painful outbreaks of lesions in my perianal area. I went to the emergency room and received a visual herpes diagnosis.. I was given a 10 day supply of acylovir and sent on my way. After about a month, I had another outbreak. I went to my doctor told him about the ER diagnosis and he prescribed me Valtrex.. I have had monthly outbreaks since then. After about a year I asked to be "officially" tested. My blood draw returned with a negative result for HSV 1 and HSV 2. They did a redraw which was also negative. However, valtrex did help alleviate my symptoms. He said sometimes the tests are wrong and I began a new treatment of 2g valtrex (1g twice a day) at the 1st sign of an upcoming outbreak and then (500mg) twice a day for 5 days. ( I have an extremely pronounced "prodrome" so I know it's coming a few days before it gets really bad- I get horrible gas, an itching feeling, followed by soreness, and nausea.) Even with the new dosage Iwas still having monthly outbreaks.. After 3 years of dealing with this, with no conclusive diagnosis, I received a second opinion. I was told I may have atypical shingles manifesting on the A(5) or A(9) or something like that? I was switched to suppressive therapy at 500mg per day. Since then I haven't had an full outbreak. I recently went on a two week vacation and I forgot my valtrex at home, 2 days before I got home my symptoms started - and this is by far the most excruciating outbreak I have ever experienced I can barely sit down, it hurts constantly, I get random shooting pains throughout my buttocks and thighs. After returning home I have been taking 2g of valtrex 2 times per day for the last 4 days with no change in symptoms.. I'm really at a loss. Does anyone have any idea what this could be? I can't find any information on any disease that causes such painful symptoms on such a regular basis literally if I stop suppression this happens every month without fail. All my blood work is normal, and apparently my immune system is operating perfectly fine.  I'm tired of getting the same, well if the medicine works just keep taking it response from my doctors. Does anyone have anything to add? Thank you in advance for any thoughts you may be able to provide. (I was contemplating getting tested again, but I'm afraid it will be negative and I will be even more confused than before- I accepted that I had herpes years ago and now I'm being told I don't so I'm really just at a loss.)

[feelingundone]

First let me start by saying that I am sorry to hear about your troubles. This sounds awful.  I think the best thing you can do is have the lesions swabbed and type specific tested. The bloodtest looks for antibodies and the culture identifies the virus itself. If it is hsv2 then it appears you are not making antibodies or so few the test can't quite pick it up.