Recurrent Meningitis Awareness Day
Facebook Support Group Members
Thank You Idaho
A big thank you to the State of Idaho for recognizing May 6, 2019 as Recurrent Meningitis Awareness Day in the state of Idaho!
Announcing the Recurrent Viral Meningitis (Mollaret’s Meningitis) Patient Registry
We are excited to announce the launch of the first ever recurrent viral meningitis (Mollaret’s meningitis) patient registry. By partnering with CoRDS (Coordination of Rare Diseases at Sanford) we are able to provide this valuable opportunity to further research into our rare disease. You can learn more about the patient registry and how to enroll at the link below.
Donate Now to Help Us #SolvethePuzzle
Along with the launch of the patient registry, we are also announcing our fundraising campaign to #SolvethePuzzle of recurrent meningitis. Our goal for the #SolvethePuzzle campaign is $5000 to support the operations of the organization including ongoing support for the patient registry. Click the button below to learn more about the campaign.
Did You Know?
How Many Are Affected?
- Estimated population affected in the US (less than 200,000) 0.0006% 0.0006%
- Estimated population affected in countries outside the US (1 in 2000) 0.0005% 0.0005%
In surveys of our members in 2018, the reported causative viruses from patient diagnosis were (in order of most to least common)
- HSV Untyped
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.
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
- Concentration Issues
- Brain Fog
- Balance Issues
- Sensitivity to Sound
- Eyesight Changes
- Nerve Pain in Extremeties
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.
The most common helpful non-invasive treatments used by our members are (in order)
- Avoidance of Stress
- Extra Sleep
The most common supplements used by our members are (in order)
- Vitamin C
- Vitamin B12
Currently, Research is being performed at Aarhaus University in Denmark that hopes to better understand the cause of recurrent viral meningitis. Below is information provided by the investigators:
Identification of novel innate immunodeficiencies in patients with HSV-2 Mollaret’s meningitis
Dr. Alon Schneider Hait, M.D, Ph.D fellow
Supervision: Prof. Trine H. Mogensen
Department of Infectious diseases, AUH
Department of Biomedicine, Faculty of Health
“…In this study, we hypothesize that an inborn genetic defect in the patient’s DNA can explain at least part of the disease pathway, by causing the host to react inappropriately to the viral invasion, or to be unable to suppress viral replication in case of reactivation. We believe that differential susceptibility to HSV-2 CNS recurrent infections is explained by host genetics, and in particular mutations found in genes encoding innate immune molecules involved in type I interferon (IFN) production…
In the end of the study, we will publish and disseminate all information gathered regarding our patients, and if novel genetic defects leading to susceptibility to Mollaret’ meningitis will be found, we will act to recognize MM as PID (primary immunodeficiency disease) by the scientific and medical communities.”
Full update can be found here: https://recurrentmeningitis.org/2018-q2-research-update/