Hi Terri!  I hate that I have returned but I have a new development I need your opinion on. I talk to you 21 months ago, please reference my previous question. I had to type specific IgG test at 12 weeks and 18 weeks. Negative for both. I did a western blot through you 24 weeks after possible exposure. Negative for both. Spoke to you via email about ongoing issues a few months ago. Seen an  infectious disease doctor and urologist.  Tried Lyrica and amitriptyline for possible nerve issues in my vulva to no relief.  Had an MRI last year to look for nerve damage that is causing daily soreness, rawness and burning (especially later in the day for the burning). Nothing found. Had 10 weeks of pelvic floor therapy and most recently, three steroid injections into my purdendal nerve. At my most recent appointment with my urologist, I spoke of my concerns again about being misdiagnosed and this being HSV. I know my situation seems highly atypical.  He offered me acyclovir to try, though he didn’t think I needed it. He said it wouldn’t be harmful but to wait a week or two before taking it. He didn’t want to interfering with my steroid injection, though my injections have not been helpful.  I started taking it twice a day, 400 mg, and by the end of the second day the burning has pretty much subsided. I still have some soreness throughout the day but the burning sensation on the right side of my labia has let up significantly. It’s not as red in the area either.  I’ve decided I will take this medication for two weeks, go off it and see what happens.  See if the burning returns or get any type of noticeable outbreak. I’m so confused. I know it’s not in my head. This has been daily and while I know that is not how HSV usually works, I can’t help but feel like an anomaly. I’m very nervous obviously that the Western blot didn’t catch my infection. I know this medication is for the herpes virus specifically. Any thoughts or insight?

Thanks for the response Terri!

I just wasn’t sure who to turn to. I know the longevity of the daily symptoms, almost 2 years, are not typical at all for HSV. I know I have read many posts from people who have had similar issues, and similar panic, because no root cause can be found. I think that’s where I’m at.

After my last injection, my urologist and I discussed surgery to implant would basically equals a pacemaker in my pelvic floor. This is the block the nerve signals to my brain. Before I took that step, I had to try everything. I’ve done everything. Acyclovir is the first thing that seemed to help the burning and, to a lesser extent, the daily discomfort. I’m happy to have some relief, believe me. I’ll just continue my experiment and see what happens when I come off it. Then it may be a trip back to my infectious disease doctor and share what I’ve found and mention the possibility of other viruses, like you mentioned. Of course transmission is not something I want to worry about but I haven’t had intercourse since this began and don’t see that even being a concern in the near future. Thanks again! I do appreciate your knowledge. Maybe I’ll have a good update down the road!