Have you heard of recurrent meningitis? Neither had I until April 2016 when I got the official name of my rare form of viral meningitis originally diagnosed as recurrent viral meningitis. This is a disease we need to know more about, and we need research to get that.
My first hospitalization with viral meningitis was in July 1998. I was in my second day of the Sheriff’s academy in San Bernardino County, California, when I collapsed in class and was rushed to the Emergency Department. They did a lumbar puncture and confirmed viral meningitis. I was hospitalized for two weeks and was never able to go back to the academy. Then in June 2009, I was displaying all of the signs again of viral meningitis (weakness, neck pain/stiffness, couldn’t touch my neck to my chest, body pain everywhere, etc.) and my wife took me to the Emergency Department. While at the Emergency Department, they did a lumbar puncture again and verified viral meningitis once again, but this time also verified the presence of Herpes Simplex Virus in my spinal fluid with a PCR test. I had to administer IV anti-virals for two weeks at home.
After seeing a neurologist in 2016 he was able to diagnose me with Traumatic Brain Injury (TBI), and since he has found two other patients with Mollaret’s Meningitis. It was then that I was able to finally find some information about this rare disease I had been dealing with and struggling to find any information on.
Many of the providers I have worked with have verified that there is absolutely the possibility of both the Mollaret’s and TBI causing issues with my brain, but there have been some that say there is no way it can. From my experience I believe it has to, especially since meningitis is the inflammation of the meninges protecting the brain. My Mollaret’s has also changed from recurrent to chronic and I rarely am symptom free.
I hope my story can help others, and help us find someone that is able to help us continue research into this horrible disease.
If you suffer from recurrent meningitis as well, please join us at the
support group we started on Facebook. Having others to talk with who deal with the same disease has been invaluable.