Providers
What is Recurrent Viral Meningitis (Mollaret's)?
Recurrent viral meningitis (Mollaret’s Meningitis) is a rare form of recurrent meningitis believed to be caused by herpes viruses and other closely related viruses.
“Recurrent meningitis is defined by at least two episodes of meningitis with associated CSF pleocytosis with no symptoms between episodes. Recurrent meningitis was first described in the 1940s by physician-scientist Pierre Mollaret, who noted a handful of cases of recurrent acute aseptic meningitis with CSF showing evidence of lymphocytic and mononuclear pleocytosis. This was later attributed to HSV-2 infection. The condition was later named Mollaret meningitis after him and the “Mollaret cells” he identified, although it is now known that many of the infectious and noninfectious etiologies of chronic meningitis can occur in a fluctuating pattern consistent with a recurrent meningitis. While triggers for recurrent viral meningitis are unclear, significant risk factors should be investigated in those who present with recurrent bacterial meningitis, including host factors such as anatomic defects that provide a nidus for bacterial CNS invasion (eg, skull-base defects, neural tube defects) and acquired and congenital immunodeficiencies that predispose individuals to recurrent ear, nose, and throat infections. Likewise, recurrent meningitis due to fungi or parasites should trigger an investigation for an underlying immunocompromised state or ongoing environmental exposures. This should go beyond testing for HIV and should include evaluation of T-cell and B-cell profiles, complement levels, IgG subclass quantification, and screening for rheumatologic conditions. Recently an association between acute meningoencephalitis infection and positive paraneoplastic antibodies in recurrent meningitis cases was identified, although further studies are required to determine the significance of autoimmune antibodies in recurrent meningitis.”1
Patient Perspective
- Causative Viruses
In surveys of our members in 2018, the reported causative viruses from patient diagnosis were (in order of most to least common):
Herpes Simplex Virus – Type 2 (HSV-2/HHV-2)
Unknown
Herpes Simplex Virus – Untyped
Herpes Simplex Virus – Type 1 (HSV-1HHV-1)
Varicella Zoster Virus (HHV-3)
- Diagnosis
In those surveys the reported methods of diagnosis were (in order of most to least common):
Lumbar puncture (with and without PCR)
Medical History
Blood test
Physical Exam
Lumbar puncture with polymerase chain reaction (PCR) is the most widely used method for confirming recurrent viral meningitis to date. Both documented in literature and from our experience, the most beneficial time frame to get an accurate result is 24-48 hours after symptom onset without any treatment for the virus. If treatment is given, then the odds of getting a positive result diminish significantly.
There are also many different terms for this disease in the medical community. The name originally used was Mollaret’s meningitis after Pierre Mollaret, but current trends in the medical field are moving away from individuals’ names toward more descriptive names for a particular disease. The current name for this disease in ICD-11 is “Benign Recurrent Meningitis”. The current names for other types of meningitis are herpes simplex meningitis, varicella meningitis, zoster meningitis, etc. Additionally, some of the most common diagnostic terms given to members within our organization include:
Mollaret’s meningitis
Recurrent aseptic meningitis
Recurrent meningitis
Benign recurrent aseptic meningitis
Recurrent benign lymphocytic meningitis
Recurrent benign aseptic meningitis
Benign recurrent meningitis
Benign recurrent endothelial meningitis
Benign Multirecurrent Endothelioleukocytal Meningitis
As you can see, eliminating differences in diagnostic terminology may clarify some confusion surrounding this disease.
- Long-term Effects
Contrary to research which describes this disease as “self-limiting”, we have found that recurrent viral meningitis can be very disabling. In our 2018 survey, in which we asked members how recurrent meningitis affects their lives, only 38% of respondents said their presentation of the disease was truly recurrent with full recovery after each episode, 30% reported chronic symptoms of meningitis, and 27% report experiencing both chronic and acute forms.
Regarding specific experiences, our members were asked to list their long-term symptoms which they felt could be attributed to the onset of recurrent meningitis. Listed below are the most commonly reported symptoms (in order of most to least common).
Memory problems
Fatigue
Headache
Concentration issues
Brain Fog
Balance Issues
Sensitivity to sound
Eyesight changes
Dizziness
Nerve pain in extremities
More research is needed to fully elucidate the long-term effects of recurrent meningitis.
- Medical Treatments
Medications most used to treat this disease are Acyclovir and Valacyclovir. Most commonly, when patients present with severe symptoms, either IV Acyclovir is administered or a PICC line is inserted and the patient is instructed to treat at home for two weeks. Outside of active infection, many of our members follow long-term Acyclovir and Valacyclovir regimens in order to suppress viral reactivation. Recent research suggests success by treating with Indomethacin as well.₂ Additionally, because some patients have negative reactions to the antivirals, Lysine and other supplements have been helpful in managing symptoms.
- Natural/Alternative Treatments
The most common helpful non-invasive treatments used by our members are (in order):
Avoidance of stress
Extra sleep
Massage
The most common supplements used by our members are (in order):
Lysine
Magnesium
Vitamin C
Vitamin B12
CONTINUUM (MINNEAP MINN) 2018;24(5, NEUROINFECTIOUS DISEASE):1298–1326. https://journals.lww.com/continuum/Fulltext/2018/10000/Chronic_Meningitis.6.aspx