Mollaret's Meningitis Support Group

Daily Support Designed to HELP Mollaret's Meningitis Sufferers'

This syndrome is very RARE. WE are OUR best SOURCE of information. Chronic Headaches, photo & phonophobia, fibromyalgia, PAIN etc.

Latest Activity

stevewonder commented on stevewonder's blog post MY Story
"Wow I've only been tapped 3 times. I don't know specifics, but my immune system is probably average"
Cynthia McCoy liked Kathy W.'s blog post Living with Mollaret's for 28 years
Cynthia McCoy commented on stevewonder's blog post MY Story
"Wow, I have had 18 hospitalizations and 30 spinal taps, so yeah I a general idea of what you have been through. I hope this finds you well. how is your immune system? I have low immunoglobulins which may be due to the constant fighting of my body…"
Cynthia McCoy liked stevewonder's blog post MY Story
Cynthia McCoy commented on Cynthia McCoy's status
"I filed in Apr l, after not working since 2/15. I was granted but they showed date of onset as May 2016, so I have to wait 2yr to get insurance from May 16. and cannot get monthly checks until Nov 2016. Really hurts, but not nearly as bad as it…"
Profile IconRyan Greenwood and RoByN tedder joined Mollaret's Meningitis Support Group
Oct 16
Sue Thomas posted a status
"Hi, I'm a newbie here but not new to MM - after a 5 year lapse I recently experienced by 17th episode. First episode was 30+ years ago."
Oct 15
Catherine Reynolds commented on Cynthia McCoy's status
"Congrats Cynthia!! How long did it take? I just put in my application."
Oct 15
Profile IconHeather and Elenor joined Mollaret's Meningitis Support Group
Oct 6
Cynthia McCoy posted a status
"I received the letter yesterday stating I was approved for SSDI for Mollarets Meningitis, and hypogammagobulinanemia,"
Sep 27
Tracine Dorner posted photos
Sep 26
Tracine Dorner posted a status
"Greetings All! I'm back! This is my 36th yr. as a sufferer. And I have missed the support and camaraderie of this site! Good to be home..."
Sep 26
Cynthia McCoy left a comment for Becky Crass
"Hi Becky, I hope you find this group as helpful as it has been for me. I hope you are doing OK today, and not dealing with an exacerbation of the disease."
Sep 24
Rainbow5 posted a status
"I'm grateful that we have a support group to share our experience with MM. I have been DX as this has been my fourth episode."
Sep 21
Profile IconBecky Crass and Rainbow5 joined Mollaret's Meningitis Support Group
Sep 21
Profile IconSue Thomas, Shawn Patrick, Marsha Quarles and 1 more joined Mollaret's Meningitis Support Group
Sep 15


Has anyone had a prescription flare up their Mollaret's?

Started by Michael Hrehor in Uncategorized. Last reply by Cynthia McCoy Sep 1. 4 Replies

I started taking lamotrigine Friday to help as a mood stabalizer, but since then I have been fighting off a flare up and been having trouble sleeping.  I have a call into the psychiatrist about it,…Continue

An educated look on the HSV Virus•Most individuals are infected with HSV-1 by 1-2 years of age

Started by Michelle Light Whittemore-Whitt in Sample Title. Last reply by Cynthia McCoy Sep 1. 4 Replies

The best medicine sometimes is education.  Human Herpes VirusesThere are 8 currently identified members of the human herpes virus family. They are ubiquitous and extremely well adapted pathogens. The…Continue

Powerful new Anti Viral" Brincidovir CMX 001"

Started by Shaun in Sample Title. Last reply by Cynthia McCoy Sep 1. 6 Replies

This drug could be to viruses what penicillin is to bacteria.CMX 001 brincidovir Is currently on fast track FDA approval and has been used as "compassionate use" in some cases today,despite "not…Continue

Tags: herodes, HSV, fast, track, meds

question about acyclovir (or other) doseage

Started by susan burch in Sample Title. Last reply by Cynthia McCoy Sep 1. 2 Replies

I've recently been diagnosed with Mollaret's Meningitis and am meeting next week with doctors to discuss prophylactic treatment. Could anyone share what me what medicine they've been prescribed to…Continue



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Blog Posts

Living with Mollaret's for 28 years

Posted by Kathy W. on August 27, 2016 at 9:44pm 4 Comments

I have been suffering from Mollaret’s Syndrome for twenty-eight years.  My first episode appeared three months after giving birth to my daughter.  I have been hospitalized so many times over the years that I have lost count.  Luckily, the last two times I became ill this year, I was able to manage the pain at home.

It has been a journey.  I went to the Mayo Clinic in 1992, and no one there was able to diagnose what I had.  It wasn’t until 2004 that it was diagnosed in Des Moines, Iowa…


An MM doc in my small town!!

Posted by Catherine Reynolds on August 17, 2016 at 8:39am 1 Comment

Attention all members near NC: an Infectious Diseases doctor recently moved from Winston-Salem to Salisbury (about 45 min north of Charlotte). He has and has had MM patients. He understood and believed everything I told him about my experiences since 1990. He was so nice, thorough, patient and he made me feel so relieved and vindicated for all those years of "you don't have HSV meningo-encephalitis, you'd be dead" - that from the late Dr. STephen Strauss, HSV guru at NIH, 1992. Years of being… Continue


Posted by Tracey Martel on August 3, 2016 at 11:30am 2 Comments

Hi everyone, I know we have been on Facebook for a couple of years now. I wanted to let everyone know Micheal Hrehor has started a new Facebook account. He did such a wonderful job on the site I have closed the other account. I would like everyone to take a minute to check it out. It is a closed group. Go to facebook and search Mollaret's Meningitis Support Group. Hope your all well!   Tracey

my husbands story from fl

Posted by Deborah Schiedel on July 21, 2016 at 6:48pm 8 Comments

my husband was dx in 2012..thankfully i worked for an infectious disease doctor at the time when he became infected... and i knew the hosptial staff..because like all of you i had to fight the doctors in the er who kept telling me it was just my husband having a migraine and teying to send him it what you want but being the over protective lioness of her family i flipped on some doctors until shift change and the other er dr came in and did a simple eval prior to the first spinal… Continue


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