I had Mollaret's for 20 years, and can really sympathise, especialy with the solitude and frustration of this!
After many bouts of meningitis (5 of which were hospitalisations) the condition finally seems to have tapered off. No meds were prescribed while in hospital, as lumbar punctures showed "no bacterial infection", so viral infection was left to itself. The last two admissions involved leg paralysis from nerve inflammation, which spontaneously resolved within 24 hours both times. During my last stay, I was referred to a wonderful neurologist who suggested Mollaret's. Interestingly, I've not had another attack since (3 years ago).
Looking back, I strongly feel the best course of action is strengthening the immune system, rather than worrying about the symptoms. The main difference between now and 3 years ago is that I got my allergies, which were severe, retested and finally under control (and therefore possibly my immune system?).
Take heart in the bigger picture: Mollaret's, as debilitating as the bouts are, is not lifelong, even in the longest cases. After my rare 20 years, I'm proof of that.
Do everything you can to strengthen your health .... focus on that rather than the disease, and I'm sure you too can wake up to a day when you realise it's over!
Best wishes!
Hi, I'm a healthy 24 year old female who has been suffering from this since Spring 2007 (came down with meningitis 3x in 3 months - acyclovir and Valtrex treatments did not work and resulted in renal failure). All 3 times, my spinal tap came back positive for HSV II.
I am currently (and have been since August 2007) taking 500mg of Famciclovir per day. For the first year, I took 500mg 3x per day. The second year I reduced it to 500mg 2x per day because it was really hard on my body. Now I'm taking 500mg 1x per day and increase this amount when I feel a genital herpes outbreak coming. I've seen both neurological and infectious disease specialists and no one can tell me for how long/how much medicine to take. ANY help or advice is appreciated.
I believe I am suffering from this undiagnosed.