Please consider joining the first patient registry created targeting research for recurrent meningitis hosted at Sanford CoRDS.
Recurrent Meningitis Information
What is recurrent meningitis?
Recurrent meningitis is meningitis that occurs more than once. This rare disease has many causes including autoimmune diseases, benign tumors, infections, malignant neoplasias, and medications. The most common amongst these causes is viral infections, also known as Mollaret's Meningitis.
Causes
Recurrent Meningitis Causes1
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.2
Autoimmune Diseases
Behcet’s disease
Behcet’s Disease, also known as Behcet’s syndrome, is a rare, chronic, autoimmune, autoinflammatory disorder of unknown origin.
Granulomatosis with Polyangitis
Granulomatosis with polyangiitis (GPA/formerly called Wegener’s granulomatosis) is systemic, meaning that the effect of inflammation can be present in the entire body. It affects the upper (sinuses and nose), and lower (lungs), respiratory system and frequently involves the kidneys, lungs, eyes, ears, throat, skin and other body organs.
Rheumatoid Arthritis
Rheumatoid arthritis (RA) is an autoimmune disease in which the body’s immune system – which normally protects its health by attacking foreign substances like bacteria and viruses – mistakenly attacks the joints.
Sarcoidosis
Sarcoidosis (pronounced SAR-COY-DOE-SIS) is an inflammatory disease characterized by the formation of granulomas, tiny clumps of inflammatory cells, in one or more organs of the body.
Sjogren’s Syndrome
Sjögren’s (“SHOW-grins”) is a systemic autoimmune disease that affects the entire body. Along with symptoms of extensive dryness, other serious complications include profound fatigue, chronic pain, major organ involvement, neuropathies, and lymphomas.
Systemic lupus erythematosus
Systemic lupus is the most common form of lupus—it’s what most people mean when they refer to “lupus.” Systemic lupus can be mild or severe.
Vogt-Koyanagi-Harada Syndrome
Vogt-Koyanagi-Harada disease is a rare disorder of unknown origin that affects many body systems, including as the eyes, ears, skin, and the covering of the brain and spinal cord (the meninges).
Benign Tumors
Craniopharyngioma
Craniopharyngioma is a slow-growing, non-cancerous brain tumor that develops near the pituitary gland (a small endocrine gland at the base of the brain which produces several important hormones) and the hypothalamus (an endocrine organ which controls the release of hormones by the pituitary gland).
Dermoid Cyst
A dermoid cyst is a saclike growth that is present at birth. It contains structures such as hair, fluid, teeth, or skin glands that can be found on or in the skin.
Epidermoid Cyst
Epidermoid (ep-ih-DUR-moid) cysts are noncancerous small bumps beneath the skin. They can appear anywhere on the skin, but are most common on the face, neck and trunk.
Infections
Bacteria
Known bacterial causes for recurrent meningitis include Streptococcus pneumoniae, Haemophilus influenzae, Neisseria meningitidis, Staphylococcus aureus, Escherichia coli.
Fungi
Known fungal causes for recurrent meningitis include Cryptococcus neoformans, Candida species, Histoplasma capsulatum, Coccidiodes immitis, and Blastomyces dermatitidis.
Parasites
Known parasites that can cause recurrent meningitis include Echinococcosis species, Strongyloides stercoralis, and Toxoplasma gondii.
Viruses (Mollaret's)
Known viral causes for recurrent meningitis include HSV-2, HSV-1, and EBV (HHV-4).
Malignant Neoplasias
Leptomeningeal Metastasis of Solid Tumors
Leptomeningeal metastasis (LM), i.e. the seeding of tumor cells to the cerebrospinal fluid (CSF) and the leptomeninges, is a devastating and mostly late-stage complication of various solid tumors.
Leukemic Meningitis
In leukemic meningitis, cancer cells have spread from the original (primary) tumor to the meninges (thin layers of tissue that cover and protect the brain and spinal cord).
Lymphomatous Meningitis
In lymphomatous meningitis, cancer cells have spread from the original (primary) tumor to the meninges (thin layers of tissue that cover and protect the brain and spinal cord).
Medications
Antibiotics
Antibiotics known to cause recurrent meningitis include trimethoprim-sulfamethoxazole, cephalosporins, amoxicillin, and ciprofloxacin.
Anticonvulsants
Anticonvulsants known to cause recurrent meningitis include lamotrigine and carbamazepine.
Chemotherapeutic Drugs
Chemotherapeutic drugs known to cause recurrent meningitis include cetuximab and intrathecal chemotherapy.
Immunosuppressive Agents
Immunosuppressive agents known to cause recurrent meningitis include IVIG, methotrexate, azathioprine and TNF inhibitors (e.g., adalimumab, infliximab, etanercept).
Non-steroidal Anti-inflammatory Agents
NSAIDs known to cause recurrent meningitis include ibuprofen, diclofenac, naproxen, and sulindac.
Other Considerations2
Chronic Meningitis
Endnotes
Rosenberg, J. & Galen, B.T. Curr Pain Headache Rep (2017) 21: 33.
Continuum (Minneap Minn) 2018;24(5, Neuroinfectious Disease):1298–1326.
F.A.Q.
Recurrent Viral Meningitis Information
What is recurrent viral meningitis?
Recurrent viral meningitis is meningitis that occurs more than once due to a viral infection. The current known causes of recurrent viral meningitis are herpes simplex virus type 1 (HSV-1), herpes simplex virus type 2 (HSV-2) and epstein-barr virus (HHV-4).Definition according to the US Genetic and Rare Diseases Information Center for recurrent viral meningitis (Mollaret’s meningitis): “Mollaret meningitis is a rare type of viral meningitis that is characterized by repeated episodes of fever, stiff neck (meningismus), muscle aches, and severe headaches separated by weeks or months of no symptoms. About half of affected individuals may also experience long-term abnormalities of the nervous system that come and go, such as seizures, double vision, abnormal reflexes, some paralysis of a cranial nerve(paresis), hallucinations, or coma. Mollaret meningitis is poorly understood and the exact cause remains unknown. However, recent data suggests that herpes simplex virus (HSV-2 and, less frequently, HSV-1) may cause some, if not most cases. Other causes may include trauma and viral infections other than herpes simplex. There is no specific treatment, so management involves supportive measures such as rest, fluids, and medicine to relieve the fever or headache.”
What are the symptoms of recurrent viral meningitis?
Symptoms of a full-blown recurrent viral meningitis infection include:
severe headaches
fever (only seen in about half of cases)
nausea
vomiting
sensitivity to light and/or sound
malaise
neck rigidity
Rarer symptoms include:
tachycardia
double vision
hallucinations
Because of the similarity in symptoms to benign migraine headache, sufferers of recurrent viral meningitis have often been misdiagnosed by medical personnel. Without proper care, symptoms can escalate to seizures and even coma. Thus, a greater understanding and knowledge of this disease will facilitate better patient care in emergency situations.Periods of severe illness usually last 3-4 days, separated by weeks or months between recurrences. However, many sufferers experience milder relapses, which although debilitating, do not necessitate hospitalization.Unfortunately, along with each recurrence, whether mild or severe, comes the risk of further disability. Nearly half of those with the disease experience long-term negative effects of the nervous system. Permanent disabilities that can develop over time include:
memory loss
difficulty retaining information
lack of concentration
abnormal reflexes
clumsiness
coordination problems
loss of balance
residual headaches
hearing problems
tinnitus
speech problems
dizziness
learning difficulties (ranging from temporary learning deficiencies all the way to long term mental impairment)
tachycardia
epilepsy
seizures
paralysis
muscle spasms
cerebral palsy
loss of sight
changes in sight
How is recurrent viral meningitis diagnosed?
Recurrent viral meningitis can be diagnosed through lumbar puncture (spinal tap) in order to examine the cerebrospinal fluid (the clear, colorless liquid that fills and surrounds the brain and the spinal cord and provides a mechanical barrier against shock). Diagnosis is made by detecting Herpes simplex virus DNA in the cerebrospinal fluid. Early diagnosis may prevent prolonged hospital admissions, unnecessary investigations, and exposure to unnecessary medications, along with their associated costs. If a patient has had a recent head injury or a problem with their immune system, they may not qualify for a lumbar puncture because of a possible fatal brain herniation; therefore, a CT or MRI scan may be performed prior to any lumbar puncture. All of the different types of meningitis (viral, bacterial, fungal and parasitic) are diagnosed by the growing presence of bacteria in the spinal fluid, a sample of which is collected with the help of a lumbar puncture. The fluid will reveal if the CSF (cerebral spinal fluid) has raised or lowered white blood cell production.There are no vaccines currently available to prevent the development of viral meningitis. Many people who have a rare disease understandably want to find healthcare professionals or researchers with knowledge of their condition. However, with a condition as rare as recurrent viral meningitis, it can be extremely difficult to find medical professionals who have treated more than one or two cases.
How is recurrent viral meningitis treated?
Currently, Acyclovir is the treatment of choice for recurrent viral meningitis. Acyclovir has proven helpful in many cases, particularly when administered intravenously, where it can cross the blood/brain barrier. It is often the immediate treatment of choice for recurrences that require hospitalization. Some have also seen a reduction in recurrences from daily oral administration of Acyclovir, but it hasn’t been shown to definitively alter the recurrence of viral meningitis.Valcyclovir is another medication similar to Acyclovir that has also been found helpful. Other common medications also administered for the subsequent pain during recurrences include:
NSAIDS (Motrin, Advil)
Hydrocodone (Norco, Vicodin Lortab)
morphine
hydromorphone (Dilaudid)
Anti-seizure medications:
Gabapentin (Neurontin)
Pregabalin (Lyrica)
Lamotrigine (Lamictal)
With recurrent viral meningitis, it is difficult to measure the effectiveness of any drug therapy because the very nature of the disease is spontaneous and recurrent. The rarity of the disease also makes it difficult to create solid documentation of clinical trials studying the effectiveness of different antiviral drugs. However, there are some medications known to be contraindicated for the treatment of recurrent viral meningitis, those include:
phenylbutazonum
steroids
antihistamines
colchicine
estrogen
For those that have obtained an allergy to Acyclovir, and other antivirals, Lysine seems to be effective at helping to minimize symptoms according to patients.
What should I know about lumbar punctures?
What is a lumbar puncture?
Lumbar puncture is a diagnostic procedure, also known as a spinal tap, where a doctor samples fluid from the spinal column without putting any medication in.Lumbar puncture is different from what is commonly known as an epidural, where an anesthesia doctor puts medication into the spine for child birth or surgical anesthesia.
What are the indications for a lumbar puncture?
To make a diagnosis of a potentially life threatening neurologic or infectious disease. The only way to perform analysis safely of the spinal fluid is by lumbar puncture in that case. It’s routinely required to perform a lumbar puncture, especially in cases of suspected infection of the brain or spinal cord known as meningitis or encephalitis.
What is the difference between Meningitis and Encephalitis?
Meningitis is an infection of the lining of the spine and the brain, whereas encephalitis is infection of the brain itself. Both can be diagnosed by lumbar puncture.
What is involved in a lumbar puncture procedure?
A needle enters the lower back through the skin, and soft tissue, and then the needle enters the spinal column to sample out the spinal fluid.
Is the lumbar puncture procedure safe?
The lumbar puncture procedure is very safe and has very few potential side effects.
What are the risks of lumbar puncture?
The main risk of lumbar puncture is pain at the site. The pain at the site can be minimized using numbing medicine, such as lidocaine which often stings itself.Another relatively common effect of lumbar puncture, with sample removal, is a post lumbar puncture headache where the patient up to five days out from a lumbar puncture can experience a certain type of headache characterized by pain at the top of the head, or back, that is positional. It is better lying down and worse when seated up, or standing, or walking around. That is reported in up to 30% of patients undergoing lumbar puncture and is usually a treatable complication with either medication or another procedure called a blood patch where the patient’s own blood is put into the lower back to treat the post lumbar puncture headache.Other very rare complication of a lumbar puncture include a formation of a collection of blood or hematoma inside the spinal column, which can be diagnosed and treated. It is greatly reduced by being aware of patients bleeding tendencies and also medications that might be able to be held for the lumbar puncture that could increase the risk of bleeding during the procedure or afterwards.**You will need to speak with your doctor about the risks and benefits of the procedure in your specific case.
Can there be neurologic symptoms, or neurologic injury, from a lumbar puncture?
It is thought to be very rare that a permanent neurologic injury could occur from lumbar puncture. When we do the lumbar puncture procedure we enter below the level of the spinal cord, and the spinal cord is most important in terms of avoiding neurologic injuries. So we go below the spinal cord.There are nerve roots inside and outside the spine that maybe come apparent during the procedure. Sometimes when the needle enters the space where the fluid is, a patient can experience a lightning bolt sensation down their leg. That usually goes away almost immediately and if it doesn’t go away immediately, it certainly goes away at the end of the procedure. It is very unusual to have a persistent symptom like that after the procedure is completed.
Other things to consider regarding lumbar punctures?
We reduce the risk of infection, or causing an infection, by using sterile techniques.
A mask for the operator
Cleansing the skin
Using a sterile field when performing a lumbar puncture
Lumbar puncture information specific to those with recurrent viral meningitis?
Mollaret’s meningitis is a recurrent type of meningitis and the only way to diagnose meningitis, inflammation of the lining of the spinal cord, is by lumbar puncture looking for inflammation there. That requires sampling of the fluid. There is no known risks of repeat lumbar puncture beyond the risks of the lumbar puncture already addressed for each time the procedure is performed.**We recommend talking to your doctor about the specifics of your case.
Patient Registry
The Coordination of Rare Diseases at Sanford (CoRDS) created the first patient registry targeted at supporting research efforts for Recurrent Viral Meningitis.Those who have been diagnosed with, or suspect they may have, Recurrent Viral Meningitis are eligible to participate in the registry.Please continue scrolling to learn more.
About the Patient Registry and FAQ's
What is a patient registry?
A patient registry is a way to collect information about an illness or disease, all in one place, from many individuals. Specifically, the Recurrent Viral Meningitis registry at CoRDS seeks to collect information about recurring meningitis of a viral cause.Within the patient registry, the person with the diagnosis or suspected diagnosis is referred to as the “participant”.The Recurrent Viral Meningitis patient registry at CoRDS can be filled out online or by mail. This patient registry can be filled out by the participant, a trusted love one of the participant, or the participant’s doctor.
What is the Coordination of Rare Diseases at Sanford (CoRDS)?
CoRDS, based at Sanford Research, is a not-for-profit research institution which acts as a centralized international patient registry for all rare diseases. The goal of the CoRDS registry is to connect as many patients and researchers as possible to help advance treatments and cures for rare diseases. The CoRDS registry is free for patients to enroll and for researchers to access. CoRDS works with patient advocacy groups, individuals, and researchers to coordinate the advancement of research into the 7,000 rare diseases.Find out more by clicking the button.
How can a patient registry help rare disease researchers?
Especially in the case of rare diseases, it can be hard for researchers to gather enough data in order to truly understand trends in a disease or illness. Patient registries allow a way for approved researchers to access large amounts of data provided by participants to use for research purposes. This can then be published in peer-reviewed scientific journals, and shared with other scientists.
Who is eligible to participate in the Recurrent Viral Meningitis patient registry at CoRDS?
You are eligible to participant in the Recurrent Viral Meningitis patient registry at CoRDS if you suspect that you have Recurrent Viral Meningitis OR if you are currently diagnosed with any of the following diseases:
Recurrent Viral Meningitis
Benign Recurrent Aseptic Meningitis
Benign Recurrent Lymphocytic in Meninigits
Benign Recurrent Meningitis
Herpes Encephalitis
Recurrent Benign Herpes Simplex Meningitis
Recurrent Genital Herpes
Recurrent Lymphocytic Meningitis
Recurrent Meningitis
Herpes Zoster
Mollaret’s Meningitis
Note: The patient registry is currently only available in English.
How do I join the Recurrent Viral Meningitis patient registry at CoRDS?
For detailed information on how to become a participant in the Recurrent Viral Meningitis patient registry at CoRDS, please scroll to the section, “Ready to get started?” below.If you need help registering, please contact CoRDs at:Email [email protected]Phone +1 (877) 658-9192or click the buttons.
I am already part of the Recurrent Viral Meningitis patient registry at CoRDS. How and when should I update my information?
Updates to your information should only take 15-20 minutes to complete. You may update your patient registry by clicking the button below.You may update your registry as often as you would like. Current information will help interested researchers to carry out their research more easily and accurately.We suggest updating your information when:
It has been a year since you last updated or entered your information
You have experienced a suspected or confirmed case of viral meningitis
You have just turned 18 (NOTE: in this case, we suggest updating immediately. If you enrolled in the registry as a minor, your data becomes inaccessible 30 days after your 18th birthday unless and until you re-enroll.)
How do I know that my information in the patient registry is safe? Who can see my information?
CoRDS has put many safeguards into place to ensure the safety of the information you provide.In the process of signing up to participate in a CoRDS patient registry, you are given a chance to read information about the registry, and then sign a form that indicates you understand what you are doing. You can sign this form either electronically (if completed online) or with a pen (if completed on paper). If you have any questions about this, please contact CoRDS.Additionally, information you provide is kept strictly confidential. The questionnaires that you complete will be associated with a code—a computer generates an ID number that is assigned to your identifiable information (name, address, etc.) and to your responses to the questionnaires. This is referred to as “de-identified” information. Once researchers receive approval to look at the registry or questionnaire responses, they will be given only de-identified data.Your privacy is also protected even if you indicate on your questionnaire that you are willing to be contacted to participate in additional research projects. For example, researchers might contact CoRDS and tell them that they want to send an additional questionnaire to all participants who have a specific symptom, such as a history of viral meningitis. CoRDS would then provide these participants with the researchers’ contact information. In this way, it is up to the participant to decide what they would like to participate in additional questionnaires.Want more information? Please click here or contact CoRDS at:Email: [email protected]Phone: +1(877) 658-9192
I have a questions about setting up my patient registry account.
If you have a questions about setting up your registry account, please contact CoRDS at:Email: [email protected]Phone: +1(877) 658-9192
I don't understand one of the patient registry questions.
If you don’t understand a question within the standard CoRDs section of the patient registry, please contact CoRDS at:Email: [email protected]Phone: +1(877) 658-9192
Ready to get started?
Important things to know before getting started:
The registry can be completed online (electronically) OR by mail (paper). If you chose to complete the paper format, please request a paper version from CoRDS by calling +1(877)658-9192 or by sending an email to [email protected]
There are 2 sets of questions to answer. (1) the standard CoRDS Questionnaire, which is completed only once by all participants of CoRDS registries and (2) The Recurrent Viral Meningitis Questionnaire, which is specific to those diagnosed with or suspected to have Recurrent Viral Meningitis and should be regularly updated.
Electronic CoRDS patient registries are best viewed on a laptop or computer.Viewing on a phone or table may distort text.
When completing the questionnaire, you have the ability to skip or save questions and return to them later. However, please remember to go back and complete unanswered questions whenever possible. Doing so will help researchers to get better data.
Step 1: Creating Your CoRDS Profile
Completing the CoRDS Screening Form
1. Begin by clicking the “CLICK HERE TO START” button above.
2. This will direct you to the CoRDS SCREENING FORM.
3. Answer each question. Click “SUBMIT” when complete. You will be directed to the LOGIN SETUP screen
NOTE: In order to access the Recurrent Viral Meningitis patient registry, you must enter an appropriate “rare disease diagnosis”. Although your actual diagnosis may differ slightly, an “appropriate diagnosis” includes any of the following:
Recurrent Viral Meningitis
Mollaret’s Meningitis
Recurrent Lymphocytic meningitis
Recurrent Benign herpes simplex meningitis
Questions? Contact CoRDS at:Email: [email protected]Phone: +1 (877)658-9192
Complete the Login Setup
Once on LOGIN SETUP page, a username will automatically be created for you.
You will then be asked to create a password and a security question.
Once complete, click “LOGIN” to proceed to the questionnaire.
Step 2: Complete the CoRDS Patient Registry Questionnaire
Once you are logged into your CoRDS Patient Registry Profile, click “START QUESTIONNAIRE” near the top of the page.
Please complete the questionnaire. This is a standard set of questions completed by all participants regardless of rare disease diagnosis.
NOTE: Click “SAVE & NEXT” button in the upper-right hand corner of the screen to proceed through questionnaire.
Step 3: Complete the Recurrent Viral Meningitis Questionnaire
Once you complete the CoRDS patient registry questionnaire, you are ready to begin the Recurrent Viral Meningitis Questionnaire.
Please complete the questionnaire to the best of your ability.
Click “SUBMIT” at the end of the questionnaire to complete.
NOTE:
Remember, you can save and return to your questionnaire at any time. Even if you click SUBMIT, you can still go back to edit your answers.
Please update your information at least annually by logging back into your CoRDS patient registry profile.
Still have questions? Contact CoRDS.
Coordination of Rare Diseases at Sanford Health (CoRDS)Email: [email protected]
Phone: +1 (877)658-9192
Patients
Information for Patients
All information contained in this page is provided as information only and is not a substitute for medical advice from a medical professional.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. 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 and most patients have 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
Most commonly reported patient symptoms (top 10)
Memory problems
Fatigue
Headache
Concentration issues
Brain Fog
Balance issues
Sensitivity to sound
Eyesight changes
Dizziness
Nerve pain in extremities
Most commonly reported treatments
(Warning! Do not take any of these medications without doctor consultation)
Medications
Acyclovir
Valacyclovir
Supplements
Lysine
Magnesium
Vitamin C
Vitamin B12
Natural Treatments
Extra Sleep
Avoid Stress
Massage
Resources and Support Organizations
Information Resources
Support Organizations
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
Researchers
Research
Completed research was performed at Aarhaus University in Denmark that helps 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 meningitisDr. Alon Schneider Hait, M.D, Ph.D fellow
Supervision: Prof. Trine H. Mogensen
Department of Infectious diseases, AUH
Department of Biomedicine, Faculty of Health
Aarhus, Denmark“This study represents the first autophagy defect causing a primary immunodeficiency with increased susceptibility to viral infection described in humans which altogether suggests an important role for autophagy in anti-HSV2 immunity in the CNS.”Full free article can be read by clicking the button:
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What Personal Data we gather about you
How we use your Personal Data
Who else has access to your Personal Data
How we secure your data
Information about cookies
Contact information
Defenitions
Personal Data – any information relating to an identified or identifiable natural person.
Processing – any operation or set of operations which is performed on Personal Data or on sets of Personal Data.
Data subject – a natural person whose Personal Data is being Processed.
Child – a natural person under 16 years of age.
We/us (either capitalized or not) – recurrentmeningitis.org
Data Protection Principles
We promise to follow the following data protection principles:
Processing is lawful, fair, transparent. Our Processing activities have lawful grounds. We always consider your rights before Processing Personal Data. We will provide you information regarding Processing upon request.
Processing is limited to the purpose. Our Processing activities fit the purpose for which Personal Data was gathered.
Processing is done with minimal data. We only gather and Process the minimal amount of Personal Data required for any purpose.
Processing is limited with a time period. We will not store your personal data for longer than needed.
We will do our best to ensure the accuracy of data.
We will do our best to ensure the integrity and confidentiality of data.
Data Subject’s rights
The Data Subject has the following rights:
Right to information – meaning you have to right to know whether your Personal Data is being processed; what data is gathered, from where it is obtained and why and by whom it is processed.
Right to access – meaning you have the right to access the data collected from/about you. This includes your right to request and obtain a copy of your Personal Data gathered.
Right to rectification – meaning you have the right to request rectification or erasure of your Personal Data that is inaccurate or incomplete.
Right to erasure – meaning in certain circumstances you can request for your Personal Data to be erased from our records.
Right to restrict processing – meaning where certain conditions apply, you have the right to restrict the Processing of your Personal Data.
Right to object to processing – meaning in certain cases you have the right to object to Processing of your Personal Data, for example in the case of direct marketing.
Right to object to automated Processing – meaning you have the right to object to automated Processing, including profiling; and not to be subject to a decision based solely on automated Processing. This right you can exercise whenever there is an outcome of the profiling that produces legal effects concerning or significantly affecting you.
Right to data portability – you have the right to obtain your Personal Data in a machine-readable format or if it is feasible, as a direct transfer from one Processor to another.
Right to lodge a complaint – in the event that we refuse your request under the Rights of Access, we will provide you with a reason as to why. If you are not satisfied with the way your request has been handled please contact us.
Right for the help of supervisory authority – meaning you have the right for the help of a supervisory authority and the right for other legal remedies such as claiming damages.
Right to withdraw consent – you have the right withdraw any given consent for Processing of your Personal Data.
Data We Gather
Information you have provided us with
This might be your e-mail address, name, billing address, home address etc – mainly information that is necessary for delivering you a product/service or to enhance your customer experience with us. We save the information you provide us with in order for you to comment or perform other activities on the website. This information includes, for example, your name and e-mail address.
Information automatically collected about you
This includes information that is automatically stored by cookies and other session tools. For example, your shopping cart information, your IP address, your shopping history (if there is any) etc. This information is used to improve your customer experience. When you use our services or look at the contents of our website, your activities may be logged.
Information from our partners
We gather information from our trusted partners with confirmation that they have legal grounds to share that information with us. This is either information you have provided them directly with or that they have gathered about you on other legal grounds. See the list of our partners here.
Publicly available information
We might gather information about you that is publicly available.
How we use your Personal Data
We use your Personal Data in order to:
provide our service to you. This includes for example registering your account; providing you with other products and services that you have requested; providing you with promotional items at your request and communicating with you in relation to those products and services; communicating and interacting with you; and notifying you of changes to any services.
enhance your customer experience;
fulfil an obligation under law or contract;
We use your Personal Data on legitimate grounds and/or with your Consent.On the grounds of entering into a contract or fulfilling contractual obligations, we Process your Personal Data for the following purposes:
to identify you;
to provide you a service or to send/offer you a product;
to communicate either for sales or invoicing;
to communicate donations
On the ground of legitimate interest, we Process your Personal Data for the following purposes:
to send you personalized offers* (from us and/or our carefully selected partners);
to administer and analyse our client base (purchasing behaviour and history) in order to improve the quality, variety, and availability of products/ services offered/provided;
to conduct questionnaires concerning client satisfaction;
On the ground of legitimate interest, we Process your Personal Data for the following purposes:
As long as you have not informed us otherwise, we consider offering you products/services that are similar or same to your purchasing history/browsing behaviour to be our legitimate interest.With your consent we Process your Personal Data for the following purposes:
to send you newsletters and campaign offers (from us and/or our carefully selected partners);
for other purposes we have asked your consent for;
We Process your Personal Data in order to fulfil obligation rising from law and/or use your Personal Data for options provided by law. We reserve the right to anonymise Personal Data gathered and to use any such data. We will use data outside the scope of this Policy only when it is anonymised. We save your billing information and other information gathered about you for as long as needed for accounting purposes or other obligations deriving from law, but not longer than one year.We might process your Personal Data for additional purposes that are not mentioned here, but are compatible with the original purpose for which the data was gathered. To do this, we will ensure that:
the link between purposes, context and nature of Personal Data is suitable for further Processing;
the further Processing would not harm your interests and
there would be appropriate safeguard for Processing.
We will inform you of any further Processing and purposes.
Who else can access your Personal Data
We will inform you of any further Processing and purposes.
We do not share your Personal Data with strangers. Personal Data about you is in some cases provided to our trusted partners in order to either make providing the service to you possible or to enhance your customer experience. We share your data with:
Our processing partners:
We use Coordination of Rare Diseases at Sanford (CoRDS) to manage our patient registry. Coordination of Rare Diseases at Sanford (CoRDS) is a third-party provider, which may process your data using industry standard technologies to help us manage our patient registry.Coordination of Rare Diseases at Sanford (CoRDS) privacy policy is available at https://www.sanfordhealth.org/privacy-statement.
Our business partners:
Not currently applicable
Connected third parties:
Not currently applicable
We only work with Processing partners who are able to ensure adequate level of protection to your Personal Data. We disclose your Personal Data to third parties or public officials when we are legally obliged to do so. We might disclose your Personal Data to third parties if you have consented to it or if there are other legal grounds for it.
How we secure your data
We do our best to keep your Personal Data safe. We use safe protocols for communication and transferring data (such as HTTPS). We use anonymising and pseudonymising where suitable. We monitor our systems for possible vulnerabilities and attacks.Even though we try our best we can not guarantee the security of information. However, we promise to notify suitable authorities of data breaches. We will also notify you if there is a threat to your rights or interests. We will do everything we reasonably can to prevent security breaches and to assist authorities should any breaches occur.If you have an account with us, note that you have to keep your username and password secret.
Children
We do not intend to collect or knowingly collect information from children. We do not target children with our services.
Cookies and other technologies we use
We use cookies and/or similar technologies to analyze customer behavior, administer the website, track users’ movements, and to collect information about users. This is done in order to personalize and enhance your experience with us.A cookie is a tiny text file stored on your computer. Cookies store information that is used to help make sites work. Only we can access the cookies created by our website. You can control your cookies at the browser level. Choosing to disable cookies may hinder your use of certain functions.
We use cookies for the following purposes:
Necessary cookies – these cookies are required for you to be able to use some important features on our website, such as logging in. These cookies don’t collect any personal information.
Functionality cookies – these cookies provide functionality that makes using our service more convenient and makes providing more personalised features possible. For example, they might remember your name and e-mail in comment forms so you don’t have to re-enter this information next time when commenting.
Analytics cookies – these cookies are used to track the use and performance of our website and services
Advertising cookies – these cookies are used to deliver advertisements that are relevant to you and to your interests. In addition, they are used to limit the number of times you see an advertisement. They are usually placed to the website by advertising networks with the website operator’s permission. These cookies remember that you have visited a website and this information is shared with other organisations such as advertisers. Often targeting or advertising cookies will be linked to site functionality provided by the other organisation.
You can remove cookies stored in your computer via your browser settings. Alternatively, you can control some 3rd party cookies by using a privacy enhancement platform such as optout.aboutads.info or youronlinechoices.com. For more information about cookies, visit allaboutcookies.org.We reserve the right to make change to this Privacy Policy.
Changes to this Privacy Policy
We reserve the right to make change to this Privacy Policy.
Medical Disclaimer
MEDICAL DISCLAIMER: THIS WEBSITE DOES NOT PROVIDE MEDICAL ADVICE
The information, including but not limited to, text, graphics, images and other material contained on this website are for informational purposes only. The purpose of this website is to promote broad consumer understanding and knowledge regarding recurrent meningitis. It is not intended to be a substitute for professional medical advice, diagnosis or treatment. Always seek the advice of your physician or other qualified health care provider with any questions you may have regarding a medical condition, or treatment, and before undertaking a new health care regimen, and never disregard professional medical advice or delay in seeking it because of something you have read on this website.Recurrentmeningitis.org does not recommend or endorse any specific tests, physicians, products, procedures, opinions or other information that may be mentioned on this website. Reliance on any information appearing on this website is solely at your own risk.
Changes to this Medical Disclaimer
We reserve the right to make changes to this Medical Disclaimer.