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

Jodi brast liked Katrina's blog post New to this support group and newly diagnosed
Nov 23
Profile IconRiley, Kristi, Janet Inman and 4 more joined Mollaret's Meningitis Support Group
Nov 23
Profile IconWendy and Tammy joined Mollaret's Meningitis Support Group
Nov 11
Beatrice Klingman liked Ronda Kemp's profile
Nov 1
Profile IconBarbra Jones and Ronda Kemp joined Mollaret's Meningitis Support Group
Oct 31
Katrina commented on Katrina's blog post New to this support group and newly diagnosed
"Thanks Jennifer i've sent a friend request to join the group :)"
Oct 28
Jennifer Doe commented on Katrina's blog post New to this support group and newly diagnosed
"Hi Katrina, It took me seven years to finally get a positive diagnosis. My doctor gave me the preliminary diagnosis of MM seven years ago. Your symptoms sound very similiar to mine. There is a facebook group I think it is Mollarets meningitis…"
Oct 28
Cynthia McCoy commented on Katrina's blog post New to this support group and newly diagnosed
"You sound very much like me, who has had 18 hospital admits and 31 spinal taps. all were positive except 3. Sorry no one else has gotten back to you. The acyclovir often takes a while to work."
Oct 26
Katrina commented on Katrina's blog post New to this support group and newly diagnosed
"Hi Cynthia, Thanks for getting back to me, I was starting to think there was no one on this support group. Do my symtoms sound similar to yours? Because I haven't had it confirmed through a spinal tap I'm a little concerned it might be…"
Oct 25
Cynthia McCoy left a comment for Amelia Johnson
"Welcome to this group, you I hope will learn as much as I have learned. this is a great group of people who truly understand, like must people don't."
Oct 25
Cynthia McCoy commented on Katrina's blog post New to this support group and newly diagnosed
"You sound just like me. I have had events every 6months for a few years, but over all I have had 18  hospitalizations and  31spinal taps. My last hospitalizations was 2016 but before that it was 2009. The first was in 1993. I ended up…"
Oct 25
Katrina liked stevewonder's blog post MY Story
Oct 24
Katrina posted a blog post

New to this support group and newly diagnosed

Hi All,I'm from Melbourne Australia and I'm a 42 year old female. Two years ago I had my first bout of what I thought was a really bad flu, which I couldn't get out of bed for a few weeks. It passed yet came back about 6 months later, it left me concerned but thought that maybe I was just having a bad year. Skip to two years forward and these attacks kept coming back almost exactly six months apart, although they kept getting worse in severity and duration. I've had two this year both lasting…See More
Oct 23
Profile IconAmelia Johnson and Katrina joined Mollaret's Meningitis Support Group
Oct 23
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"
Oct 19
Cynthia McCoy liked Kathy W.'s blog post Living with Mollaret's for 28 years
Oct 19

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

New to this support group and newly diagnosed

Posted by Katrina on October 23, 2016 at 10:07pm 5 Comments

Hi All,

I'm from Melbourne Australia and I'm a 42 year old female. Two years ago I had my first bout of what I thought was a really bad flu, which I couldn't get out of bed for a few weeks. It passed yet came back about 6 months later, it left me concerned but thought that maybe I was just having a bad year. Skip to two years forward and these attacks kept coming back almost exactly six months apart, although they kept getting worse in severity and duration. I've had two this year…

Continue

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

 
 
 

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