Information for Patients

Information focused on patients
The information below should help you understand more about how recurrent viral meningitis (Mollaret’s) can affect someone.

Information for Patients

Thank you for looking to the Recurrent Meningitis Association for information.  

All information contained in this page is provided as information only and is not a substitute for medical advice from a medical professional.

At the Recurrent Meningitis Association (RMA), we understand that  recurrent meningitis is a poorly researched rare disease, and therefore we believe that patient experiences are our best source of information. Please understand that you are not alone: we are all in this together and together we can find answers. In fact, RMA is working on further research for recurrent viral meningitis (Mollaret’s) through the development of a patient registry. However, it is important to remember that although we share a common illness, our bodies react differently to medications, supplements, foods etc. Please consult with your doctor before taking any medications or supplements.

We have noticed that it is common for patients to report the condition getting worse with  age. Because pain lacks visible evidence, some doctors have difficulty understanding a patient’s pain. Patients can be told that their symptoms are all in their heads, which is another reason we need more research to substantiate these experiences. Pain management is important with this disease. Being in pain causes an increase in blood pressure and intracranial pressure as well as stress to the body. Anecdotal evidence seems to support that stress alone can bring on an episode for many patients.

Lumbar punctures can be an important diagnostic tool. The lumbar puncture will reveal what disease-causing agents may be in the spinal fluid, and it is the only way to definitively tell what is causing your active meningitis episode. It is believed by some patients that multiple lumbar punctures can cause serious problems, this is why many patients only consider additional lumbar punctures after diagnosis if the symptom profile is different than usual. Lumbar punctures may continue to be recommended by some medical professionals to rule out other causes of a meningitis episode, however a new cause may be unlikely. These are concerns you need to address with your healthcare professional.

Due to its rare nature and lack of research on the topic, some doctors have never heard of recurrent viral meningitis (Mollaret’s). There is also a common misconception in the medical community that one cannot be diagnosed with meningitis twice. Initial research found that most recovered from this illness.  Unfortunately, we do not have any evidence of this in our association. Most of our members has suffered for years, and some have experienced episodes after long periods of relative calm.

It is recommended before seeing your healthcare professional to write down all your symptoms and allergies to medications. It is also important to take your current supplements and medications, including over the counter medications,  with you to each appointment. This is because, in rare instances, some medications are found to be responsible for a patient’s recurrent meningitis, referred to as “drug-induced” meningitis.

Patient Reported Information

The information provided here is from surveys conducted by the Recurrent Meningitis Association of its members.  We hope to provide more comprehensive information from our patient registry once that information is available.

Most Commonly Reported Patient Symptoms

(top 10 from most to least common)

  1. Memory problems
  2. Fatigue
  3. Headache
  4. Concentration issues
  5. Brain Fog
  6. Balance issues
  7. Sensitivity to sound
  8. Eyesight changes
  9. Dizziness
  10. Nerve pain in extremeties

Most Commonly Reported Treatments

(WARNING! DO NOT TAKE ANY OF THESE MEDICATIONS WITHOUT DOCTOR CONSULTATION)

Medications

(most to least common)

  1. Acyclovir
  2. Valacyclovir

Supplements

(most to least common)

  1. Lysine
  2. Magnesium
  3. Vitamin C
  4. Vitamin B12

Natural Treatments

(most to least common)

  1. Extra Sleep
  2. Avoid Stress
  3. Massage

Resources & Support Organizations

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Information Resources

Meningitis Research Foundation (Global)

Meningitis Research Foundation is a leading UK and international charity that brings together people and expertise to defeat meningitis and septicaemia wherever it exists.

Website

Meningitis Research Foundation of Canada (CAN)

The Meningitis Research Foundation of Canada has become an advocate for research and vaccination, a source of information, a focus for donation and funding, and a support for people who have experienced meningitis in their own lives.

Website

National Patient Travel Center (USA)

The Patient Travel Referral program, a program of Mercy Medical Angels, provides information about all forms of charitable, long-distance medically-related transportation and provides referrals to all appropriate sources of help available in the national charitable medical transportation network.

Website

NIH Genetic and Rare Diseases
GARD is a program of the National Center for Advancing Translational Sciences (NCATS) to provide access to current, reliable, and easy to understand information about rare or genetic diseases in English or Spanish.
Rare Disease Report (Global)

Rare Disease Report is a website and weekly e-newsletter that offers an independent voice for the Rare Disease Community. It strives to bring together medical, scientific, investment, regulatory, and advocate professionals interested in rare diseases and orphan drugs.

Website

University of Miami Brain Endowment Bank (USA)

The University of Miami’s Brain Endowment Bank™ is a National Institutes of Health (NIH) NeuroBioBank, one of six designated brain and tissue biorepositories in the nation.

The Brain Endowment Bank encourages brain donation to support medical and scientific researchers, who study the human brain in search of better medications and treatments, and ultimately, a cure for brain diseases and disorders.

Website

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Support Organizations

Canadian Organization for Rare Disorders (CAN)

CORD is Canada’s national network for organizations representing all those with rare disorders. CORD provides a strong common voice to advocate for health policy and a healthcare system that works for those with rare disorders. CORD works with governments, researchers, clinicians and industry to promote research, diagnosis, treatment and services for all rare disorders in Canada.

Website

Caregiver Action Network (USA)

Caregiver Action Network (CAN) is the nation’s leading family caregiver organization working to improve the quality of life for the more than 90 million Americans who care for loved ones with chronic conditions, disabilities, disease, or the frailties of old age.

Website

Center for Chronic Illness (Seattle, USA)

The Center for Chronic Illness is a nonprofit organization based in Seattle, Washington. CCI focuses on three main pillars in providing support and education to the chronic illness community: Emotional Well-being, Health Education, and Community.

Website

Chive Charities (USA)

Chive Charities has changed the giving paradigm. As opposed to using the cause to raise awareness on behalf of the recipient, we encourage the recipient to let their story raise awareness for their cause. Donors are connected to the entire story from beginning to end – we watch our recipients go out into the world to do incredible things, and we are right beside them.

Website

Confederation of Meningitis Organisations (Global)

The Confederation of Meningitis Organisations Inc. (CoMO) is an international member organisation working to reduce the incidence and impact of meningitis worldwide.

Website

Eurordis (Europe)

Rare Diseases Europe is a unique, non-profit alliance of over 700 rare disease patient organisations from more than 60 countries that work together to improve the lives of the 30 million people living with a rare disease in Europe.

Website

Global Genes (Global)
Global Genes®  is one of the leading rare disease patient advocacy organizations in the world. The non-profit organization promotes the needs of the rare disease community under a unifying symbol of hope – the Blue Denim Genes Ribbon®. 
Meningitis Now (GBR)
We were the first meningitis patient group in the world, founders of the meningitis movement and the only charity dedicated to fighting meningitis in the UK.
National Alliance for Caregiving (USA)
Established in 1996, the National Alliance for Caregiving is a non-profit coalition of national organizations focused on improving the lives of family caregivers. Alliance members include grassroots organizations, professional associations, service organizations, disease-specific organizations, government agencies, and corporations.
National Organization for Rare Disorders (USA)
NORD, a 501(c)(3) organization, is a patient advocacy organization dedicated to individuals with rare diseases and the organizations that serve them.  NORD, along with its more than 260 patient organization members,  is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and patient services.
Patients Like Me (USA)
We’re a free website where people can share their health data to track their progress, help others, and change medicine for good.
Rare Disease Day (Global)
Rare Disease Day takes place on the last day of February each year. The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives.
Rare Diseases International (Global)

RDI is the global alliance of people living with a rare disease of all nationalities across all rare diseases.

RDI brings together national and regional rare disease patient organisations from around the world as well as international rare disease-specific federations to create the global alliance of rare disease patients and families.