World Upturned When Nurse Epidemiologist Comes Down with Reoccurring Meningitis

by Cynthia McCoy

Mollaret’s Meningitis began for me in 1993 at about 4:00 AM.

I awoke with an incredible headache, stiff neck and being a Nurse Epidemiologist, RN at a major hospital in Dallas, Texas, I knew immediately I had meningitis. What the doctors and I didn’t know after my admission to the hospital that October, morning was that this was not a typical viral meningitis. Upon admission, I was told in a few weeks I would be fine.

Two weeks after being discharged from the hospital, I returned to work in the same hospital I had been admitted to. Although, I felt extremely exhausted, and I continued to have headaches. Some six months later I was readmitted with the identical symptoms which were present on the first admission.

Again, my CSF, after the second spinal tap indicated (as did the spinal tap some previous six months ago) that I had a viral meningitis. Again, I was reassured, although this second occurrence was unexpected, that I would recover soon– as viral meningitis was not serious.
To date, I have had some 18 admissions, and 31 spinal taps.

Most of the spinal taps have indicated viral meningitis. The disease progressed to encephalitis. I did develop memory loss, balance issues contributing to multiple falls and several broken bones, frequent bouts of aphasia, intolerance to the sun, pericarditis, and depression. One of the five admissions to the ICU, I was in multiple system failure, acidosis, and had a near death recovery. I did not recover as promised to me in 1993. Today as a RN CIC LHRM MPH, I am unable to work due to frequent bouts of headaches, memory loss, and many days bedbound. Even to write this narrative which previously I could have done in a few minutes took me hours. I can’t look at a computer, except for a few minutes at a time due to the constant photophobia I deal with daily.
DNA testing of the spinal fluid have indicated I have a virus which is non-curable. The virus is a herpetic virus, similar to that which causes, shingles, or cold sores, which so many of the general population has and lives normal lives, except for the various bouts of dealing with cold sores, or shingles.

In addition, I have developed a depressed immune system, hypogammaglobulinaemia. Due to the many bouts with meningitis and encephalitis, my immune system is very limited in its ability to fight infections, even though I am on antiviral medication daily, as well as other medications to manage my neurological symptoms.