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

Beatrice Klingman replied to Krista's discussion Newly Diagnosed
"Hi , My name is Bea Klingman, I have had 4 episodes of menegitis, one of the times I was at homealone. I have been hospitalized the other three times on heavy medication. There has been a considerable amount of brain damage, and a long recovery was…"
Wednesday
Krista posted a discussion

Newly Diagnosed

Can someone who has had MM for some years please give me some insight on a few questions I have. I recently got Viral Men. for the second time in 13 months. Both were Herpes2. My first question is can you have mild attacks without the full blown hospital stay? The past few days my joints have been aching. Especially my right arm which also happens to be where I use to breakout. Since the first bout of viral Meng. I haven't had sores on my arm. I also have some mild headaches. I'm 34 almost 35…See More
Monday
Joyce replied to Lauren Branca's discussion My story
"I have had many flares without fever, they just a milder than when I get full blown meningitis. When its a full out attack I get the high fever, and end up in the hospital for about a week. The good thing about the LP is that maybe…"
Jul 24
Tracey Martel shared Catherine Reynolds's blog post on Facebook
Jul 24
Marc Vaughan is now a member of Mollaret's Meningitis Support Group
Jul 20
Catherine Reynolds commented on Michelle Light Whittemore-Whitt's blog post Annual Payment for This Site is DUE in 6 weeks. Please donate via PayPal today if your able to!
"Oh that is truly awesome. Thanks to our angel!"
Jul 16
Lauren Branca replied to Lauren Branca's discussion My story
"Catherine, thanks so much for the reply. I'm now working with my primary care doc who had never heard of MM, but is researching and helping me along with the ID doc. My primary is definitely recommending the LP, and I know it has to be in the…"
Jul 15
Catherine Reynolds posted a blog post

Anyone else with MM have cancer?

I have been diagnosed with two cancers in the past four months: Terminal Stage 4 pancreatic Neuroendocrine carcinoma (the Steve Jobs cancer that can allow you to live longer, possibly years) and this week, Breast cancer, stage zero (very early, very contained). I am 56 years old. I have had MM for 25 years, my first episode was near fatal meningo-encephalitis (the virus was infecting the brain in addition to the meninges).My subsequent episodes (the fourth and onward) are infrequent but they…See More
Jul 15
Catherine Reynolds replied to Lauren Branca's discussion My story
"Lauren - frankly, it is the doctors who need to be educated on this and if you have a decent doc, pls recommend joining the site. Docs don't like anecdotal information but we are too few in number to study in science, so this IS OUR SCHOOL.…"
Jul 15
Catherine Reynolds replied to Lauren Branca's discussion My story
"HeyDeborah, who is your doctor?"
Jul 15
Deborah Ballard replied to Lauren Branca's discussion My story
"Hi Lauren, I stopped counting my episodes when I hit 13 which was 5 years ago and have had many sense. I was diagnosed in 2007. I was told then by my infectious disease doctor that the mollarett cells only show up in the first 24 hours after an…"
Jul 9
Tina is now a member of Mollaret's Meningitis Support Group
Jun 30
kd is now a member of Mollaret's Meningitis Support Group
Jun 26
Jenn replied to Lauren Branca's discussion My story
"I have had 4 episodes so far. Just got over the 4th and it is the only one that they haven't done a spinal tap for. I am honestly surprised your dr's have never done a spinal before. It was the only way for them to know if mine was…"
Jun 25
Lauren Branca posted a discussion

My story

Hi all. I am new to this group, I have been seeing an infectious disease dr. and she has done lots of blood work, which has all come back looking good. The reason she thinks I have MM is this...I have been sick with this unknown virus for about 20 years. I am very healthy usually, but when I get the episodes, I get really sick with terrible headache, neck ache, body ache and fatigue. The episodes can last from a few days to a few weeks, and can be as frequent as every few weeks, or sometimes…See More
Jun 25
Lauren Branca is now a member of Mollaret's Meningitis Support Group
Jun 24

Forum

Newly Diagnosed

Started by Krista in Sample Title. Last reply by Beatrice Klingman on Wednesday. 1 Reply

Can someone who has had MM for some years please give me some insight on a few questions I have. I recently got Viral Men. for the second time in 13 months. Both were Herpes2. My first question is…Continue

My story

Started by Lauren Branca in Sample Title. Last reply by Joyce Jul 24. 6 Replies

Hi all. I am new to this group, I have been seeing an infectious disease dr. and she has done lots of blood work, which has all come back looking good. The reason she thinks I have MM is this...I…Continue

John Leahy: Gone but Never Forgotten

Started by John Leahy in Sample Title. Last reply by Annie Jun 11. 6 Replies

Hi everyone on here.This is John Leahy's daughter, Vhairi.I regret to inform you that my father passed away on Tuesday, May 26th, 2015.He was diagnosed with cancer in February, and 3 months later…Continue

Tags: drugs

White spots on throat before it starts

Started by Jenn in Sample Title. Last reply by Elizabeth Alpert Jun 8. 2 Replies

I just joined this group and have a question. I am currently going through my 4th episode, my 3rd within a yr so they r becoming more frequent. Everytime this happens, it starts with a sore throat…Continue

 

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Blog Posts

Anyone else with MM have cancer?

Posted by Catherine Reynolds on July 15, 2015 at 11:09am 0 Comments

I have been diagnosed with two cancers in the past four months: Terminal Stage 4 pancreatic Neuroendocrine carcinoma (the Steve Jobs cancer that can allow you to live longer, possibly years) and this week, Breast cancer, stage zero (very early, very contained). I am 56 years old. I have had MM for 25 years, my first episode was near fatal meningo-encephalitis (the virus was infecting the brain in addition to the meninges).



My subsequent episodes (the fourth and onward) are infrequent… Continue

Intermittent Fasting

Posted by Rich Diehl on May 17, 2015 at 10:31am 3 Comments

     Has anyone every tried intermittent fasting. I just started on the 5:2 diet, where you take two days of the week and eat less than 500 calories (modified fasting). For the first few weeks, it gave me a mollarets flare up for a few days each time I fasted. However, each week that passes I seem to get fewer flare up. Anyone else have experience with this?

Rich

Annual Payment for This Site is DUE in 6 weeks. Please donate via PayPal today if your able to!

Posted by Michelle Light Whittemore-Whitt on May 15, 2015 at 11:07am 6 Comments

Hello everyone!  The annual payment for this site is due in about 6 weeks.  I cannot afford to pay for this alone due to illness and I'm currently not working right now.  With that said, if you are able to help with a donation (any amount is much appreciated), please consider doing so through PayPal.  It is a secure…

Continue

IM BACK! How is Everyone?

Posted by Michelle Light Whittemore-Whitt on March 29, 2015 at 5:44am 3 Comments

Welcome to all the newcomers.  I missed you all, bring me up to speed on what is happening.

Michelle W.

 
 
 

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