HSV2 related recurrent meningitis

  : : Hello... My name is Janice. I am a 43yr.old female and have been diagnosed
  : : with HSV2 related recurrent meningitis. I've had this for over 2 1/2 yrs.
  : : I'm currently taking an acyclovir, Famvir 500mg.twice daily; Ultram or Vicodin(for pain), but this isn't keeping the symptoms under control. I feel like I'm in a constant viral cycle along with a wide range of complaints.. severe headaches & spinal pressure; severe backaches; nausea; fevers off & on; painful lymph nodes in my neck,armpit & groin area; extreme fatigue;difficulty walking;and the herpetic neuralgia. My primary care dr. says she really doesn't know what more she can do for me. The dr. who diagnosed me has limited his practice. I guess my question is: are there any dr.s that are familiar with this condition and is there any additional treatments or help? Would I poss. benefit by asking my PCP for a referral to see a neurologist? I'm on an HMO so my care has been very limited. I can only see my dr. once a year unless I'm dying. My husband is a health care professional and cannot believe the lack of help or interest in my condition. Through it all,though, I've regained my sense of humor and work on keeping positive.  Thank you so much for your time.
  : Dear Janice:
  : I am sorry to hear of your problem.  It is abit unusual that HSV-2 would seed proximally (into the brain) during outbreaks multiple times, but it has been reported.  The medication you are currently taking is the only known medication for fighting the HSV virus.  As you already know, the virus lives in the sensory root neurons and during times of excerbation multiple and seed to other areas.  Those viral particles that live within the neuron are protected from the anti-viral agent.  What is your immune status?  Usually, immunocompetent people only have periodic outbreaks.  How many times has your HSV given you encephalitis and recurrent encephalitis symptoms?  Anyway, yes you should see a neurologist.  He/She will be able to monitor the baseline deficits from the viral infection, and then monitor what is an excerbation of the CNS encephalitis versus ongoing stable deficits from the previous infections.  If you are undergoing new symptoms with evidence of active infection, intervenous acylovir would be best.  So, talk to your PCP and arrange a consultation.  Best of Luck.  Let us know what happens.
  : Sincerely,
  : CCF Neuro[P] MD, RPS
  Thank you for your response. In answer to your questions, my immune status is compromised and I've had a total of 10 "major episodes". These episodes are proceded by a herpes "flare-up", or physical or emotional overdoing it. The encephalitis symptoms are constant now, but varying in degree of severity, even in the course of one day. I have my "annual" check-up the day before Thanksgiving. Do you have any additional comments? I hope that I have something to really be thankful for! Much appreciated.
                                                     Janice
Dear Janice:
Again, see a neurologist.  I would still say that when you have flair up of the HSV, IV acyclovir is best, but that is my opinion.  Good Luck, I just know your thanksgiving will be good.
Sincerely,
CCF Neuro[P] MD, RPS