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

Rich Diehl is now a member of Mollaret's Meningitis Support Group
David Hanson is now a member of Mollaret's Meningitis Support Group
Nov 11
Tracey Martel posted a status
"Just wondering if anyone has tried Cymbalta?"
Nov 5
Betsy Goodman replied to Betsy Goodman's discussion Flying while having meningitis symptoms
"Thanks, Catherine! I have had various & conflicting advice from docs, so wondered if anyone has experience with flying. I've got a trip coming up with my daughter, who has MM, and I'm hoping she stays healthy."
Nov 5
Jan Adams commented on Tracey Martel's blog post MM and Social security
"I guess I was lucky. With an attorney's help, I got it on my second request. I've been on it now for a year so I had about six months with no income except a disability check from insurance I had been paying for at work. I don't make…"
Nov 2
JustinP is now a member of Mollaret's Meningitis Support Group
Nov 2
Catherine Reynolds commented on Rebecca E Dekle's blog post Spinal Fluid Indicating HSV Meningitis
"I have had negative LPs in the hospital during a bout of meningitis twice now. What is awful is if your doc only works from LP as proof, you will not get proper treatment. I learned the hard way. They think a negative LP means it's ABSOLUTELY…"
Nov 2
Catherine Reynolds replied to Betsy Goodman's discussion Flying while having meningitis symptoms
"I was medically advised against flying due to pressure changes. Anything that can aggravate the meninges should be avoided. Obviously if you need to fly somewhere just for medical attention, that may outweigh any risks in air pressure."
Nov 2
Catherine Reynolds left a comment for Logan's Mom Jess
"Hi Jess - Gee I hope Logan does not have Mollaret's. I can appreciate why you are asking us, but know we are only patients and laypersons in a support group, our docs know very little about MM except that we are about one in a million. The only…"
Nov 2
carla mann liked carla mann's profile
Nov 1
carla mann liked carla mann's profile
Nov 1
Profile IconFRANK KWABENA, ghijk70697 and Rebecca Flanagan joined Mollaret's Meningitis Support Group
Nov 1
Logan's Mom Jess left a comment for Logan's Mom Jess
"Hello everyone. My name is Jess and I am here to learn from everyone about MM. My 12 year old son was recently hospitalized twice (September 28th 2014 for 4 days and again 4 days later). He had complained of having a headache while having a fever.…"
Oct 24
Logan's Mom Jess liked Logan's Mom Jess's profile
Oct 24
Profile Iconann and Logan's Mom Jess joined Mollaret's Meningitis Support Group
Oct 23
Beatrice Klingman posted a status
"Death does not scare me, but the suffering is just too much."
Oct 18


Flying while having meningitis symptoms

Started by Betsy Goodman in Sample Title. Last reply by Betsy Goodman Nov 5. 2 Replies

Does anyone know if it is ok to fly in an airplane while experiencing symptoms? Continue

What do you tell people?

Started by Gwen O'Leary in Sample Title. Last reply by Lisa Denke Sep 29. 5 Replies

I'm a patient at the hospital I work at, so of course coworkers who treat me know what's up; I hope they practice confidentiality.  What I'm wondering is what you tell people who ask why you keep…Continue

auto immune diseases

Started by Deborah Ballard in Sample Title. Last reply by Lisa Denke Sep 26. 9 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

memory is gone and going quickly

Started by daniel in Sample Title. Last reply by Beatrice Klingman Sep 20. 7 Replies

Hello all, nice to meet others with the same problems. I have been diagnosed with molllarets by my doctor after my 5th hoapitalization. Every time i get a lumbar puncture, every time i get better in…Continue



  • Add Photos
  • View All


  • Add Videos
  • View All

Blog Posts

Medication for leg "pain"

Posted by Christina on October 1, 2014 at 9:23am 4 Comments

Hi all!

I am trying a new doctor next week. My infectious disease doctor is worthless because he doesn't feel my leg problems have anything to do with my MM. I have been under the care of a pain management doctor and been taking tramadol for close to a year. The problem is it doesn't work anymore. I eat it like candy as my legs hurt all the time. I never have relief, so taking the pain med is an all day occurance. I don't want to go on another, stronger pain med. So back to a new… Continue

Kidney Damage from Acyclovir/Valtrex

Posted by Lisa Denke on September 26, 2014 at 11:11am 1 Comment

I have blood tests monthly for kidney damage, and no damage despite high doses for months on end. I want to share the data so people have it.  In medical papers, they talk about kidney failure, but it seems to be only people who are on IV's, not pills.  I have never been on an IV, only pills.

I'm not saying the dose I'm on would be ok for everybody, but here's the data:

DOSES (per day)

Prior to July 2013 Acyclovir or Valtrex at "normal" doses.  Sometimes I was…


Spinal Fluid Indicating HSV Meningitis

Posted by Rebecca E Dekle on September 12, 2014 at 4:30am 8 Comments

I jut had a thought the other day. Has anyone gone to the hospital, had a spinal tap done, and it DID NOT show meningitis? I just asked this because I wondered if it is always there in our spinal fluid because of mild to moderate day to day symptoms. Every time I have went, they found it, but I'm having so many moderate bouts, I am on my last string in going to the hospital. Every time I go, it's the same thing a spinal tap, and I really get scared now because I had a very bad experience…



Posted by Joyce on August 15, 2014 at 10:42pm 6 Comments

“MRI shows a oblong, flare bright focus in the frontal deep white matter of my brain. Basically it means a lesion. Any one else have this show up on a MRI. Now they think I have MS but I think its just from the Mollaret's.



© 2014   Created by Michelle Light Whittemore-Whitt.   Powered by

Badges  |  Report an Issue  |  Terms of Service