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

Juliana Carson posted a discussion

Dizziness ????

I am still dizzy !! Usually during an episode i am dizzy - but this time it has lingered - and now four months after the last episode - i am still ridiculously dizzy !! Is this something that anyone else suffers from ??? The doctors are just baffled - and i am so tired of it !! Any ideas out there ??????See More
Wednesday
Miranda Neumann is now a member of Mollaret's Meningitis Support Group
Apr 21
Michelle Light Whittemore-Whitt commented on Michelle Light Whittemore-Whitt's blog post IM BACK! How is Everyone?
"Oh Catherine I am SO SORRY to hear this news!  We do have a fellow sufferer on here from New York that was diagnosed with cancer and during her treatment she got back to back meningitis.  You know how this syndrome/disease works, benign…"
Apr 21
Mary Triviski shared a profile on Facebook
Apr 21
Wanda is now a member of Mollaret's Meningitis Support Group
Apr 20
january is now a member of Mollaret's Meningitis Support Group
Apr 18
Andrea M-w is now a member of Mollaret's Meningitis Support Group
Apr 16
Lynn M. is now a member of Mollaret's Meningitis Support Group
Apr 14
April replied to April's discussion White blood cell count
"Hi there. Thanks Annie for your information. I have never thought about meningiomyelitis. He has never been confirmed HsV but the Drs call it MM due to frequent reoccurrences. His neutrophils were high. I will talk to ID doc on Tuesday about this.…"
Apr 12
Svetlana Astapenko replied to April's discussion White blood cell count
"Hi! And that accompanies his meningitis? How to start a new episode? My daughter suffers aseptic meningitis for 4 years- more than 20 episodes. But we have learned how to stop these episodes and they began to flow more easily and faster. Since then,…"
Apr 12
Annie replied to April's discussion White blood cell count
"Sorry to read about your husband's situation. Is the cause of his recurrent meningitis HSV-2? I can relate to the widespread pain. I have the nerve pain, bone pain, joint pain, everywhere pain of every kind it seems after too many recurrences…"
Apr 11
April posted a discussion

White blood cell count

Hello, my name is April. My husband is now recovering from his sixth episode of aseptic meningitis. Each time, it seems the recovery process is longer and harder. He was discharged from a week hospital stay in December. He still has severe headaches, body aches, extreme fatigue and mood swings. He is so run down and miserable. It breaks my heart. He went to see a new infectious disease doctor just to see if there was anything he could do to give him some quality of life. The ID doctor ordered a…See More
Apr 11
Profile IconNatasha MacDonald, Katie Komada and Zoe joined Mollaret's Meningitis Support Group
Apr 6
Tracey Martel left a comment for Laura Kad
"Hi Laura,  The only treatment my Dr's use is acyclovir and morphine for pain. No sure if there is anything else. Why are you looking for something else? Does it work for you?"
Apr 4
Laura Kad left a comment for Laura Kad
"I am a sufferer, for sure.  I am looking for anyone who has had success with a doctor.  Anywhere, any kind of doctor who is knowledgeable, or who has any type of treatment besides the standby acyclovir?"
Apr 3
Tracey Martel shared a profile on Facebook
Apr 1

Forum

Dizziness ????

Started by Juliana Carson in Sample Title on Wednesday. 0 Replies

I am still dizzy !! Usually during an episode i am dizzy - but this time it has lingered - and now four months after the last episode - i am still ridiculously dizzy !! Is this something that anyone…Continue

White blood cell count

Started by April in Sample Title. Last reply by April Apr 12. 3 Replies

Hello, my name is April. My husband is now recovering from his sixth episode of aseptic meningitis. Each time, it seems the recovery process is longer and harder. He was discharged from a week…Continue

Dermatological issues???

Started by Patricia W. in Uncategorized. Last reply by Michelle Light Whittemore-Whitt Mar 29. 9 Replies

Has anyone experienced dermatological issues with his/her MM (in addition to or without a HS2 lesion/outbreak?

Tags: Molleret's

Need advice

Started by Deborah Lauer in Sample Title. Last reply by Annie Mar 8. 4 Replies

Hi my name is Debbie and I live in Texas. Was diagnosed 2 years ago but had my 3rd reoccurrence this past week that was the worst one yet. I thought I was dying. I refused to go to hospital because…Continue

 

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Blog Posts

IM BACK! How is Everyone?

Posted by Michelle Light Whittemore-Whitt on March 29, 2015 at 5:44am 2 Comments

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

Michelle W.

I just wanted to share something that I tried with everyone.  I do not believe that my side effects are as bad as some peoples, but I do have alot of the same symptoms.  About 6 months I went to the …

Posted by Brenda Mayer on January 7, 2015 at 10:20am 3 Comments

I just wanted to share something that I tried with everyone.  I do not believe that my side effects are as bad as some peoples, but I do have alot of the same symptoms.  About 6 months I went to the health store, I spoke with a doctor and they tried me on some vitamins.  I took olive leaf for the viral infection, I have not had symtpoms for the last 5 months.  I struggle with major headaches that last for months during an onset.  I have been headache free for 5 months.  Nothing the doctors…

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Request a speaker from the Meningitis Foundation of America

Posted by Rebecca E Dekle on January 4, 2015 at 3:18pm 0 Comments

I have requested a speaker from the Meningitis Foundation of America, please put in your request as well, the more that request, the more we will have an opportunity. the website is http://www.musa.org/request_a_speaker

Lugols iodine gave me my live back after 20+ years of worsening symptoms.

Posted by Rich Diehl on November 25, 2014 at 6:41pm 9 Comments

I just joined the forum, and I was hoping that someone had found a miracle cure. Instead, I found a lot of stories similar to my own, filled with frustration with both the condition and the medical community.

However, I may have found something which will help some of you. Since last year I have been taking 50 mg of lugols iodine, 500 mg of valtrex, together with up to 8 grams of lysine per day when I have symptoms coming on.This mixture has moved me from being in bed with meningitis…

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