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 posted a status
"Death does not scare me, but the suffering is just too much."
Saturday
Beatrice Klingman posted a status
"There was no way I could even look at my phone to get help or read a persc label."
Saturday
Beatrice Klingman posted a status
"I had a bad episode last week, home alone with my dog. The pain was unreal and I had such photosensitivity that I was blind"
Saturday
Beatrice Klingman left a comment for John Casperson
"Welcome to the support group"
Wednesday
Beatrice Klingman left a comment for Raymond
"Welcome to the support group"
Wednesday
Beatrice Klingman left a comment for amanda schiltz
"Welcome to the support group"
Wednesday
Beatrice Klingman liked amanda schiltz's profile
Wednesday
Profile Iconamanda schiltz, Raymond and John Casperson joined Mollaret's Meningitis Support Group
Wednesday
Lisa Denke posted a status
"I've been editing the Wikipedia article on Mollaret's. https://en.wikipedia.org/wiki/Mollaret%27s_meningitis"
Oct 11
Profile IconLM Nope and Amy Andrews joined Mollaret's Meningitis Support Group
Oct 6
Annie commented on Christina's blog post Medication for leg "pain"
""Reluctant to believe the virus was the cause of my neurological problems"... This BOGGLES THE MIND...there are few neurotrophic and neuropathic viruses like herpes simplex 2, and if the other causes are ruled out, I don't see the…"
Oct 5
Joyce commented on Christina's blog post Medication for leg "pain"
"Your welcome. I am glad you found them helpful. Sorry about the red type face, I did a cut and paste. And that's how the article was in the folder I made on my computer. I have compiled quite a few journal articles to show my ID doctor as…"
Oct 4
Christina commented on Christina's blog post Medication for leg "pain"
"This is great! Very helpful. I can't thank you enough!"
Oct 2
Joyce commented on Christina's blog post Medication for leg "pain"
"Lyrica did help me with leg pain but it made my eyes swell. Here are a couple of articles on leg pain JAMA: http://archneur.jamanetwork.com/article.aspx?articleid=795486 Part way down in the article check out HSV-2 RADICULOPATHY There is another one…"
Oct 1
Christina posted a blog post

Medication for leg "pain"

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 rheumatologist…See More
Oct 1
Betsy Goodman posted a status
"Does anyone have info about flying in an airplane when having meningitis - or experience having flown while sick?"
Sep 30

Forum

Flying while having meningitis symptoms

Started by Betsy Goodman in Sample Title Sep 30. 0 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

 

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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…

Continue

Spinal Fluid Indicating HSV Meningitis

Posted by Rebecca E Dekle on September 12, 2014 at 4:30am 7 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…

Continue

MRI

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.

 
 
 

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