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

Gwen O'Leary posted a blog post

recent attack

I posted on my status - I don't know why!Have had a horrible headache. All the symptoms. I've had great care thus far. This emerg doc did a spinal, said I was fine and must have a "bad headache". Sent me home. I know the symptoms, so I'm confused. Michelle says if you wait too long, it doesn't show up? My own fault I guess. I've never felt healthy again since this started. I don't even think I look the same :( It's so frustrating. I used to run and be active. I have an extremely physical job…See More
Tuesday
Gwen O'Leary commented on Gwen O'Leary's status
"I didn't realize that. Finally went in, but had been a couple days. I do have three previous documented cases. This doctor, however, was not very nice to me. He did the puncture, said it was negative and I must just have a headache. :( I know…"
Tuesday
Gwen O'Leary posted a status
"So I've had a horrible headache since I woke up yesterday. Trying to decide at what point I need to go to the hospital . Any thoughts?"
Sunday
Tracey Martel left a comment for mary elaine spellman
"Welcome to the group. Please take the time to look through our site, ask questions and share your story."
Apr 6
Tracey Martel left a comment for Mako
"Welcome to the group. Please take the time to look through our site, ask questions and share your story."
Apr 6
Profile IconMako and mary elaine spellman joined Mollaret's Meningitis Support Group
Apr 6
Darla posted a status
"3 week after ins. ripped me off Valtrex the virus is ragging throughout my body."
Apr 4
Melanie Braido commented on Rebecca E Dekle's blog post Side Effects from the Valtrex
"I am very lucky to have found a general doc. who admits she knows nothing about MM and asks me about info. I have gotten from this site. I would feel so much more alone had I not found this support group!!"
Apr 4
Melanie Braido commented on Rebecca E Dekle's blog post Side Effects from the Valtrex
"Have you tried acyclovir, Rebecca? I don't really have side effects from it. I just don't like the idea of taking antivirals, but for me, it seems to be working."
Apr 4
Melanie Braido liked Rebecca E Dekle's blog post Side Effects from the Valtrex
Apr 4
Rebecca E Dekle commented on Rebecca E Dekle's blog post Side Effects from the Valtrex
"I know what you mean, instead of them finding out more knowledge they are ruining marriages for some. That's sad. I'm glad to know that more people have it, but never have an outbreak. It just felt like they were telling me I had something…"
Apr 4
Tracey Martel posted a status
"FYI We now have a Facebook page. Hoping to help more sufferer's."
Apr 4
Melanie Braido commented on Rebecca E Dekle's blog post Side Effects from the Valtrex
"...correction from last post: we KNEW she was out of her mind. ; ) I take Acyclovir and I hate taking it, but I have not had full on meningitis since I have been taking it for almost a year."
Apr 3
Melanie Braido commented on Rebecca E Dekle's blog post Side Effects from the Valtrex
"I have never had an hsv outbreak of any kind either and was shocked the first time I was hospitalized with MM and the ID doc. said I was hsv 1 and 2 positive. She then told me that either my husband or myself must have had a recent affair and…"
Apr 3
Joyce liked Tracey Martel's blog post MM and Social security
Apr 2
Tracey Martel commented on Tracey Martel's blog post MM and Social security
"Tammy, I was not able to work during the process. If I worked at all it would have been denied. "
Apr 1

Forum

auto immune diseases

Started by Deborah Ballard in Sample Title. Last reply by Darla Mar 31. 7 Replies

WOW! haven't been on here for quite a while (having so many other medical issues) when I joined this site I think there were 6 members!  Anyway, I have a question for all my fellow Mollaret members:…Continue

Encephalitis Recovery

Started by Jody Palmer in Sample Title. Last reply by asmith Mar 21. 10 Replies

I have been seeing more and more people posting that they have had encephalitis and recovered.  I was just laughed out of my Neurologist appointment after telling the doctor that I believe I had…Continue

long term mollarret's sufferer...need info

Started by Christine Henkel in Sample Title. Last reply by Sheryl Martin Mar 13. 7 Replies

Hi....just got diagnosed after a few weeks in the hospital.  My first bout of meningitis was when I was 17.  Over the last 30 years, I would have recurring outbreaks every couple of years, although…Continue

Help My Daughter, Please

Started by Jeremiah Pechin in Sample Title. Last reply by Jeremiah Pechin Mar 6. 4 Replies

My daughter, Isabella, has had recurring meningitis every time she gets a middling sickness of any sort. She had once gotten a full blown version of meningitis. There is a history of herpes simplex…Continue

 

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Blog Posts

recent attack

Posted by Gwen O'Leary on April 15, 2014 at 10:18am 0 Comments

I posted on my status - I don't know why!



Have had a horrible headache. All the symptoms. I've had great care thus far. This emerg doc did a spinal, said I was fine and must have a "bad headache". Sent me home. I know the symptoms, so I'm confused. Michelle says if you wait too long, it doesn't show up? My own fault I guess. I've never felt healthy again since this started. I don't even think I look the same :( It's so frustrating. I used to run and be active. I have an extremely… Continue

MM and Social security

Posted by Tracey Martel on March 30, 2014 at 10:59am 5 Comments

Hi everyone, I wanted to let everyone know I filed for SS 2 years ago for my MM. I was approved last week. The Judge found this disease to be to debilitating to work at a substantial job do to episodes, rest time and pain. Yes it was a long 2 years but it paid off.

Colloidal Silver?

Posted by Sheryl Martin on March 27, 2014 at 10:55am 0 Comments

I have known about colloidal silver for years as there have been many docs who practice wholistic medicine who have advocated it for chronic infections. Supposedly, it is supposed to kill herpes virus. I took it for a time when I was being treated for Lyme Disease, but never continued it. I got frightened away after I saw a person on TV whose skin had turned blue from using it. (Although he supposedly took excess doses) Has anyone ever tried this and if so, what was response? There is some…

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finally back... with most of my story...

Posted by Helene Smith on March 27, 2014 at 2:30am 2 Comments

2 1/2 years later and i'm finally getting back here!! i've been suffering with this stuff all the while, nearly monthly in the last two years! i am sort of confused by where to post what on this site and comment/repsond. don't feel quite well enough to go on much tonight, just KNOW i'm in the right place. truth is, i have never been diagnosed (i've had a neurologist agree with it, but never did a lumbar puncture). but after reading again the stories here tonight, i could have written every…

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