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

Cynthia McCoy posted a status
"I received the letter yesterday stating I was approved for SSDI for Mollarets Meningitis, and hypogammagobulinanemia,"
Tuesday
Tracine Dorner posted photos
Monday
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..."
Monday
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."
Saturday
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, Marsha Quarles, Caroline L. Petrie and 1 more joined Mollaret's Meningitis Support Group
Sep 15
Cynthia McCoy commented on Linda Husdale's blog post Looking back 21 days ago
"Your story is a story I too have lived. It is so hard when you feel as if you are a burden to those you love. For me, it begins switch pressure headaches, pressure in my back and neck, and unstable gate. I fall frequently when walking, just broke my…"
Sep 8
Cynthia McCoy commented on Kathy W.'s blog post Living with Mollaret's for 28 years
"I was first dx in 1993 w meningitis and after about 6 hospitalization I was again diagnosised w Mollarets in 1996."
Sep 8
Cynthia McCoy commented on Kathy W.'s blog post Living with Mollaret's for 28 years
"Boy do I realize the event, good or bad, I too can become very ill after any unusual occurrence, good or bad-- even working in the yard where I get over heated, or going on a vacation."
Sep 8
Profile IconVicky W, Nichole Cranston and JK joined Mollaret's Meningitis Support Group
Sep 1
Cynthia McCoy replied to Michael Hrehor's discussion Has anyone had a prescription flare up their Mollaret's?
"I have been hospitalized twice after taking Ibuprofen. There is literature also supporting the exacerbation of MM after taking this medication. Also, I have had rebound episodes, when I abruptly stopped taking my acyclovir ( like when I was out of…"
Sep 1
Cynthia McCoy replied to Michelle Light Whittemore-Whitt's discussion An educated look on the HSV Virus•Most individuals are infected with HSV-1 by 1-2 years of age
"I believe I have read, a large percentage are exposed to HSV1, by the age of 5."
Sep 1
Cynthia McCoy replied to Shaun's discussion Powerful new Anti Viral" Brincidovir CMX 001"
"I would love try this! I am scheduled to go to an immunologist in a couple of weeks at Washington University in St Louis , Medical School. So I will ask if they are aware of this med."
Sep 1
Cynthia McCoy replied to susan burch's discussion question about acyclovir (or other) doseage
"I was on Acyclovir and changed to Valtex 1000mg twice a day. Ringing in my ears much worse, but headaches might b a bit better. Honestly, I think I preferred Acyclovir, but had to take it 4 xs a day instead of twice daily. -- I would love to know…"
Sep 1
Cynthia McCoy liked Shaun's discussion Powerful new Anti Viral" Brincidovir CMX 001"
Sep 1

Forum

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…

Continue

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

Facebook

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 home...call 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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