Mollaret's Meningitis Association For a world free of Mollaret's Meningitis

By: Michael | September 26, 2017

Dustin Pepper, our Executive Director, recently had the opportunity to write a post for our partner, the Confederation of Meningitis Organisations (CoMO), about the importance of partnerships.  You can read the post here

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By: Michael | September 22, 2017

By Mary

I was diagnosed about 3 years ago. It started on a Saturday morning at the end of May with a headache. We had family visiting for the weekend and had gone out to Mexican food. At first I thought it was the sugar in the Margaritas. Took a couple of Excedrin but it did not ever subside. In fact over the next 24 hours it was starting to get really bad. I finally took a Vicodin after my guests left on Sunday night. I woke up around 3:00 in the morning vomiting and with the most excruciating headache I have ever experienced. I was curled up in the fetal position for the next three days. Once the vomiting subsided I felt a little better but not much. I thought I had a really bad flu. It wasn't until about a week and a half later that my si...

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By: Michael | September 18, 2017

Medical Advisory Board member
Dr. Alon Hait

Dr. Alon Hait, one of our Medical Advisory Board members, will be presenting his research on Mollaret's Meningitis to a group at Oxford University later this month. His talk is called, “Mollaret’s meningitis – the case of an underused diagnosis and the link to primary immunodeficiencies”.

You can get information about the event here:

He has agreed to provide pictures and an update on how the event went. We will share that with you once he is able to provide the information to us.

By: Michael | September 15, 2017

By Julie

Mollaret meningitis has controlled my life. I feel so badly for everyone on this website who has this horrible disease. I have looked and researched for years to find answers. Any answers. My health has not been good. Since being diagnosed first in the year 2000, I have had it three times. Each time was more severe than the last. 

I did go to Mayo Clinic in Rochester MN to see if any specialists there could tell me more. I went to Rush University in Chicago. They did not have answers. I have been to many infectious disease doctors, seen so many specialists, blood test, lumbar punctures, brain, spine, neck MRI's. I am left just thinking there is no cure. There is no help, and this disease is poorly researched and not fully unders...

By: Michael | September 08, 2017

By William | Denver, CO

About 10 years ago I started having problems with headaches, nausea, digestive problems, and a lot of back pain but not usually all at once. 

It wasn't until 2015 that I had a major episode of Mollaret’s, and since then I've had multiple outbreaks.  Each one is so brutally painful that they're crippling, I can barely move, and they make it to where I can't think.  It also makes it to where I can't do anything.  I can't open my eyes to look because the light hurts too bad.  I can't move, rollover, sit, stand, anything for an extended period of time.  Focusing on anything gets rather difficult, especially during outbreaks. 

I was not definitively diagnosed until 2017 by an infect...

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By: Michael | July 21, 2017

By Cathy - Holly, MI

In 1995 I woke in the morning with Bell's Palsy (the right side of my face was paralyzed). Two days later I was hospitalized with meningitis. I am just recovering from my 16th episode in 22 years. Some years I get it twice, but I have also gone 4 or 5 years without getting it. With each episode I require IV pain meds (typically morphine) to get the pain under control, so it requires a trip to the hospital. I have had 10 spinal taps and refuse to have another. The most frustrating part, besides losing a month of my life with each episode, is that the doctors don't believe that I've had meningitis 16 times and think it's just a migraine headache since I won't allow a tap. I am so grateful to this organization for attemptin...

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By: Michael | July 07, 2017

By Teresa

I was taken to the hospital September 5, 2001 from work. My boss called my husband and told him I was talking backwards and just not acting right. I had been having a headache for three days at this point. 

On Aug, 28, 2001 I was bitten by a dog that had no shots. In July we went on vacation to a lake. So My wonderful Dr I is thinking I contacted something at the lake and when the dog bit me that trigger it all. Thank you dog. 

It's been 17 years with 4 flare up. I was in a coma. Doctors never thought I would make it. The Epilepsy is battle too . I have that from scar tissue in my brain now. I have brain damage. It's an everyday battle. But God is good.

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By: Michael | June 27, 2017

We were saddened to hear about the loss of Vince Bossi, a member of our Mollaret's Meningitis community, recently. He was battling the varicella-zoster virus and Mollaret's meningitis.  You can read more about his struggle with this disease at the links below, as well as his obituary.

Our thoughts and prayers go out to Vince's friends and family in their time of loss.

By: Michael | June 01, 2017

By Traci, Pelzer, SC, US

I have been battling this horrific disease for 16 years. I've had 6 episodes so far. I usually go 2-3 years between each occurrence.

Hopefully someone will find a cure for us.

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By: Michael | May 12, 2017

By Laura: San Marcos, TX

My first episode of meningitis was in 1980. I was 24 years old and was hospitalized for 10 days. I have had recurring meningitis at least 15 times. The first few times, I was hospitalized and spinal fluid was removed for a diagnosis. Each successive episode for 12 years was less severe than the one before. At the end of that period, I was able to just stay in bed for 2 days before I was better. 

I had a few years with no episodes, then it started up again with a 4 day hospitalization and then getting less and less severe. Each time I went to the hospital, I was told it was meningitis, but I could not possibly have gotten it so many times. 

My last episode was in 2010 and in a different city than any of t...

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By: Michael | May 05, 2017

Jessie suffers from a rare form of meningitis that means she can go months without symptoms and is prone to relapses
5th May 2017,10:11 am
Updated: 5th May 2017,11:56 am

JESSIE Calway is lucky to be alive after developing deadly meningitis twice in a year.
The dance student, now 21, was in the first year of her degree when she developed a bad headache in May 2015.

Dance student Jessie has been struck with meningitis twice

Her symptoms started out as a headache but she deteriorated within daysBut her headache quickly deteriorated into vomiting, vertigo and confusion and she was diagnosed with meningitis.

The University of Surrey student recovered only to be struck by the condition again in Jul...

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By: Michael | April 28, 2017

By Kami

Hello, I'm relieved to have found this site after a 15 year journey trying to figure out what's wrong with me.

I've had six hospitalizations for aseptic meningitis beginning in 1999. The last bout was two years ago and took me about six weeks to recover. Since then I have felt ill with various aches and pains, and lethargy but never related it back to the meningitis. I thought I had Lyme or toxic mold, or maybe I was just crazy. 

Because all the doctors I've seen had never heard of multiple meningitis cases, I received very little guidance or treatment plan. I have tried to avoid stress and nsaids, eat very clean, workout every day and meditate a lot- but that's about all I'm doing preventively. I'm very happy to have found this ...

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By: Michael | March 03, 2017

By Jodi

Hello to all of you who suffer with this terrible illness. My heart goes out to you, and I truly hope that my story will help put an end to all of your pain as I feel it did mine.

I was a normal, athletic, and healthy 44 year old woman until one day when I got sick with what I thought was the flu. When I was still sick some two weeks later my doctor sent me to the hospital where I learned that I had spinal meningitis. For the first few days they put me on an antibiotic drip fearing that it might be bacterial meningitis, but when my culture came back as viral meningitis they released me from the hospital and told me that I just needed to rest and let it run its course , and I'd be better soon.

Well I did get better, but then a few day...

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By: Michael | February 17, 2017

By Lisa Sherman-Weeks

Sometimes I can't open my eyes. I have to lie quietly in a dark room with a blindfold on for days. On those days I have pain so deeply excruciating that I focus on my breath to keep from panicking. That dark pain lasts for 3="5" days....the Drs try to help....but nothing really brings comfort. I just have to hold on. Meningitis is a humbling I have to fight often....but...sadly...I am not alone. There are others with this recurrent form of aseptic Meningitis. We have found each other and created a website

We felt it necessary to begin advocating for our disease to eventually be able to obtain the funding to support research ourselves.

Our goals are:

To create a location where anyo...

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By: Michael | February 15, 2017

Below are a couple of articles from our research team.  The first is talking about a vaccine being worked on for herpes, and the second is talking about a drug having an unexpected use for Epstein–Barr virus.

By: Michael | February 13, 2017

"What started as double vision for St. John teen Vince Bossi has led to a rare virus.

“After 18 months we finally have a diagnosis,” said Lisa Bossi, Vince’s mother. “Vince has VZV. This virus is a shingles virus and attacks the central nervous system. The doctors at Mayo Clinic, Columbia University in New York and Denver are concerned this may be a new mutation.”

VZV stands for varicella-zoster virus. They refer to it as Vince’s Virus because it is the first case Mayo Clinic in Rochester, Minnesota, has seen. It is also one of the few cases known.

Vince has not been able to walk since December — nor can he roll over in bed or sit up on his own.

Vince also has been diagnosed with Mollaret’s Meningitis, a form of recurrent aseptic meningiti...

By: Michael | February 03, 2017

By Amanda Jayne

I was first diagnosed with viral meningitis in 2012 and was told this would never come back. Since then I have had many further attacks and have now been diagnosed with Mollaret's Meningitis. I woke up blind and confused with horrendous headaches. I am now medication dependent for life and I've also had to leave employment due to the many dips/ attacks.

With the help of Meningitis Now I have been helped to find a reason to fight, to beat this, and take back control of my life. I have trained in Beauty Therapy and am in the process of setting up my own business so that I'm able to work around my illness. I am fighting back and will continue to do so.

My support worker Lucie from Meningitis Now has been amazing and a tower of ...

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By: Michael | January 27, 2017

By Marisa Ray, M.A.Ed.

Mollaret’s Meningitis is a virus that infects the membrane that encases your brain and spinal cord - the meninges. When the meninges swells due to infection it puts pressure on the brain which wreaks havoc in the body of the sufferer. This disease is extremely rare. Trying to find doctors that can effectively treat sufferers is difficult. The Mollaret’s Meningitis online support group has proven to be invaluable to me. Having the ability to share stories with other people that are going through the same thing is cathartic and healing. This resource provides me with validation and an avenue of release on the rough days or weeks.

My symptoms (typical for most sufferers, at varying degrees) -

  • Daily - headaches, pressure l...

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By: Michael | January 20, 2017

By Jonathan
Braintree, UK

I suffered a near fatal attack of viral meningitis in 2002, very close to 'checking out of hotel life' as my neurologist said. I was off work for nearly 6 months and fought tooth and nail with the medical profession to make them see that VM is not always mild and that I was really ill. Following the initial recovery and going back to work, periodically the VM seemed to return. Symptoms including very stiff neck, photophobia, slurred speech and inability to coordinate my movements oh and a headache like I had an entire football team practicing kicks in my head. The attacks lasted for 1-2 days at a t...

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By: Michael | January 13, 2017

By Jenn

My story began eight years ago when I was given a shingles diagnosis, after the rash on my leg kept recurring the doctors ran more tests and determined it was recurrent hsv. I would get horrific headaches that would start in the base of my spine, travel into my ribs and neck and then it felt like lightning shooting out of my eyes. I figured I must have started getting migraines. I would suffer on my couch for days. This went on every six months for three years. 

I finally went to the doctor and told him my symptoms. I was very lucky that he knew what Mollaret's was and he stated that based on my symptoms that he was quite sure that is what I had. It would take many years before a conclusive diagnosis was made. It is very difficult to ...

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