I'll try to help. However, it would be helpful to have more information. Are you only having groin/leg pain, without swelling or tenderness in the groin? What is the timing and pattern of the pain -- i.e., does it come and go hourly, every few days, or some other pattern? How often, and how long does it last each time? Are you having recurrent genital lesions? And have things imroved since you started the acyclovir?
Pending that information, I'm assuming you are having fairly frequent, maybe semi-continuous pain; no overt herpes lesions; and that it hasn't improved on acyclovir, or you would have said so. If these assumptions are correct, for sure your pain isn't due to herpes, at least not directly. If you had prominent lymph node enlargement or tenderness at the time of the initial diagnosis (as many people do), you could be having residual pain as a result of that inflammation, even though there is no longer any active inflammatory process. In answer to one of your direct questions, such symptoms definitely are not "normal for herpes". Most people have no symptoms at all between recurrent outbreaks of genital lesions.
It is true that when acyclovir is used for suppression of HSV-2 infection, the usual dose is 400 mg twice daily. However, even the lower dose would help control any symptoms due to herpes. I'm not sure you need to be on an anti-herpetic drug at all. The main reasons for it are to suppress genital recurrences (which you don't seem to have, but I'll be waiting for the additional information); and to reduce the risk of transmission to a sex partner. For that, you definitely should be on at least 400 mg twice daily or, better yet, valacyclovir (Valtrex).
I don't understand why an HIV PCR was done. If the last possible exposure to HIV was more than 4 weeks ago, a standard antibody test is the preferred test. But in any case, the PCR shows you aren't infected with HIV, nor would I suspect it based on your symptoms.
As for herpes care in the LA area, the only specific source I know is the division of infectious diseases at UCLA medical center. However, I'm sure there are excellent options elsewhere in the area. The American Social Health Association (www.ashastd.org) maintains lists of herpes-knowledgeable providers in some geographic areas; you might call them.
I'm looking forward to hearing more about your symptoms. But based on what you have said so far, I doubt herpes is responsible for the pain you describe.
Regards-- HHH, MD
Thank you for your prompt reply. I'll try to answer your questions.
You are correct, no overt lesions, just semi-continuous pain. To date, I have had only one actual lesion outbreak, maybe two. No real tenderness in the groin itself, though there is some tenderness in the groin lymph nodes. You are also correct, the pain seems to be the same whether I take the acyclovir or not. After what I assume is the initial outbreak, my lymph nodes in my arms were very sore with a red spot in each armpit. That has not occurred since.
I had the PCR test done due to the fact I read about the window period and wanted a result that could satisfy my anxiety, which may be part of this as well. I have been quite anxious, depressed since I have learned of my HSV2 results. I know that anxiety can lead to many things, which this may be as well.
I would also like to prevent my wife from getting it, hence the suppression prescription. She went in for a test, and the doctor basically told her, without a culture, don't waste your time with blood tests. Also, is it possible to have had herpes for many years then have an outbreak like this? It seems the more I research HSV, the more vague this virus is in it's identification. Thank you again for your time.
That is more or less what I expected to hear. Herpes is not the cause of your symptoms, except conceivably as a result of residual pain from previous inflammation -- perhaps of nerve roots, not lymph nodes -- from the initial infection. Your own suggestion that it is mostly anxiety-related sounds like a good bet.
There are sufficient atypical aspects of your story to make me wonder about the diagnosis of genital herpes. Certainly genital HSV-2 cannot cause lymph node inflammation in the armpits, so something else had to be happening there. You might explore in more detail exactly what the culture showed, including whether it was actually a culture or PCR test. If there is any doubt about the reliability of the test, you should have a blood test to see if in fact you have antibodies to HSV-2.
Your wife's doctor is obviously naive about herpes. A blood test for HSV-2 is exactly what she needs to determine whether she has already been infected (in which case you need not take acyclovir or any other precautions to prevent transmission to her) or not infected and therefore susceptible.
Yes, it is possible to have genital HSV-2 for years and then have what seems to be the first symptoms, even though it's really a recurrent outbreak. This also is something that a herpes-knowledgeable health care provider could help to sort out.
For all these reasons, I strongly suggest you follow through on your own initial ideat: you and your wife need toi find a doctor who understands herpes better than the one(s) you have seen so far.
Thank you very much for your detailed responses. I will follow through on your action items. Keep up the good work.
Actually asha doesn't keep a list of providers so no use calling them however there is a very active HELP group in LA that you can contact for help in finding a provider near you. I think their website is www.lahelp.org.