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

Mary is now a member of Mollaret's Meningitis Support Group
7 hours ago
Lisa Denke commented on Rebecca E Dekle's blog post Spinal Fluid Indicating HSV Meningitis
"This article discusses a case where the patient had multiple spinal taps, only some were positive. He had obvious clinical symptoms. http://www0.nih.go.jp/JJID/SC-29.pdf "
yesterday
Mary Triviski liked Beatrice Klingman's status
yesterday
Mary Triviski liked Beatrice Klingman's status
yesterday
Beatrice Klingman replied to daniel's discussion memory is gone and going quickly
"Hi I am a new member of this group and a mm suffer.  I have had three bouts with MM.  I have been overdosed while in the hospital and my kidneys have failed while on anti virals IV.  Since I moved from Alaska to Louisiana I had to get…"
Saturday
Beatrice Klingman posted a status
"So Happy to have found this online support group. I too am a MM sufferer."
Saturday
Deborah Ballard commented on Rebecca E Dekle's blog post Spinal Fluid Indicating HSV Meningitis
"Tracey Martel is absolutely right. lumbar puncture must be done within 24 hours of symptoms or it will not show."
Saturday
Lisa Denke commented on Joyce's blog post MRI
"I had a finding on MRI that was "Single focus of T2/FLAIR hyperintensity, measuring approximately 3 mm is present in the left frontal periventricular white matter, nonspecific finding which can be seen in disease-free…"
Saturday
Gwen O'Leary commented on Rebecca E Dekle's blog post Spinal Fluid Indicating HSV Meningitis
"Yes, this happened to me.  My third one showed nothing.  Hospitalized twice before that.  Went in a third time.  Different emerg doctor.  He was quite rude to me, and obviously thought I just had a migraine.  Told me…"
Saturday
PATRICIA M DENKE replied to Deborah Ballard's discussion auto immune diseases
"What a great question! I and 2 of my sisters, and one cousin, all have cranial neuralgias. my cousin's is (so far) restricted to her facial nerve. Nonetheless, it cost her her job. people with facial tics are not welcome. mine is just…"
Wednesday
Profile IconPATRICIA M DENKE, Abdalla ahmed and Lisa Denke joined Mollaret's Meningitis Support Group
Wednesday
Tracey Martel commented on Rebecca E Dekle's blog post Spinal Fluid Indicating HSV Meningitis
"After you were diagnosed with MM they should have really stopped the taps. The taps will only show the MM in the first 24 hours. If you have the tap after that it may not show.I just realized we are the same age. To me , after I turned 40 MM got…"
Sep 14
Joyce left a comment for Lynn
"It can be caused by either. But most often by one of the many herpes viruses. Valtrex is a anti viral medicine."
Sep 13
Rebecca E Dekle commented on Rebecca E Dekle's blog post Spinal Fluid Indicating HSV Meningitis
"I know my doctor really doesn't know much about it so he sends me to an er in the hospital. The hospital says they have to do it each time."
Sep 12
Lynn replied to Gwen O'Leary's discussion Drugs
"I too take Valtrex. Giant pills. Nonetheless the have certainly helped reduce the recurrence of Mollarets and the attacks are not quite as severe."
Sep 12
Lynn left a comment for Lynn
"I am 60 years old. When I was in my early 30's I was diagnosed with Mollarets. At that time there was no Internet. Even the CDC was unfamiliar with Mollarets Meningitis. Today most physicians that I see are familiar with it. The big exception…"
Sep 12

Forum

memory is gone and going quickly

Started by daniel in Sample Title. Last reply by Beatrice Klingman on Saturday. 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

auto immune diseases

Started by Deborah Ballard in Sample Title. Last reply by PATRICIA M DENKE on Wednesday. 8 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

Drugs

Started by Gwen O'Leary in Sample Title. Last reply by Lynn Sep 12. 8 Replies

I've talked about this before.  I take 1000 mg of valocyclovir (valtrex) every single day of my life.  It has been one year since my last hospitalization, and I've had one mild episode inbetween.  I…Continue

MRI

Started by Joyce in Uncategorized Aug 14. 0 Replies

""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?""Continue

 

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Blog Posts

Spinal Fluid Indicating HSV Meningitis

Posted by Rebecca E Dekle on September 12, 2014 at 4:30am 6 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.

THE SITE HAS BEEN PAID IN FULL BY ITS MEMBERS!

Posted by Michelle Light Whittemore-Whitt on August 15, 2014 at 5:37pm 2 Comments

Hello everyone!  I hope this message finds you well today.  I wanted to thank everyone who has donated to the site.  In fact, we received two full payments from (2) members Tommy G and Jeremy D.  A couple of others donated $20 to the site.  Please don't send anymore money until I get a paypal acct set up and then for those who wish to donate towards the book they can do so.  I have much information to update you on regarding the book.  Its amazing technology we have at our finger tips…

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PLEASE NOTE WE MAY LOSE THE SUPPORT SITE.

Posted by Michelle Light Whittemore-Whitt on July 3, 2014 at 9:59pm 6 Comments

I hate to be the bearer of bad news, but we may have to cancel the support site.  I didn't get any responses from any members on helping this year with the payment of the site.  I have had great help the past two years and I really appreciate every one of you who helps with this site, not just for money but for responding to new members needs and getting the support out there.  I thank each and every one of you.  I am trying to get Ning to stop any deductions from my debit card as I have…

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