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

M from Finland replied to Gerrie pisapia's discussion meningitis again
"I just wrote a topic about medication that has helped me. I have decided that the disease can't limit my life. I live normal life, except I have strong painkiller medication always with me because the pain starts usually quite quick and I need…"
1 hour ago
M from Finland posted a discussion

medication helps!

I have had medicine valavir 500mg+500mg in February. I took every morning and every evening one pill. I did not have so much headaches as usually. But. I was feeling so bad, I just wanted to throw up all the time. I stopped to take it anymore. And then came headaches... But not as often as before!In the summer I started to take Hexal 400mg, twice a day. It helped too! And did not cause that awful feeling. But. I'm very allergic to many things and my skin started to get bad. Now its quite bad…See More
1 hour ago
Gerrie pisapia posted a status
"We have an appointment with a Neurologist who has treated patients with Mollaret. We are going to see him on September 9th!!"
7 hours ago
Gwen O'Leary replied to Gerrie pisapia's discussion meningitis again
"Hi there.  I've had four "official" bouts that required hospitalization, and at least a couple that seemed somewhat milder where I stayed home and hacked it out on my own.  It's an awful thing.  My life has never…"
Tuesday
Joyce replied to Cheryl's discussion Shingles outbreak... What's next?
"I have had shingles a few times. Never had a MM episode with them. They do hurt like hell and I had headaches with them.  I used to take antivirals at the 1st sign of shingles, (they didn't know I had MM at that…"
Monday
Cheryl posted a discussion

Shingles outbreak... What's next?

Super curious to find out how many of us have had an outbreak of shingles prior to a MM episode. About 2 weeks ago I began to notice that my right upper groin area was numb, in just one spot. The next couple of days it began to spread downward to my upper thigh. Within 7 days I noticed a rash that at first looked like a hive rash that I usually get from stress. Now it looks like a shingles outbreak. Trying to figure out exactly what I have to look forward next. Those of you that get shingles...…See More
Sunday
Cheryl liked Michelle Light Whittemore-Whitt's blog post WOULD ANYONE BUY A MOLLARET TSHIRT IF I HAD THEM MADE?
Sunday
Tom Dougherty liked Michelle Light Whittemore-Whitt's blog post WOULD ANYONE BUY A MOLLARET TSHIRT IF I HAD THEM MADE?
Sunday
Tom Dougherty liked Michelle Light Whittemore-Whitt's blog post WOULD ANYONE BUY A MOLLARET TSHIRT IF I HAD THEM MADE?
Sunday
Melanie Braido liked Michelle Light Whittemore-Whitt's blog post WOULD ANYONE BUY A MOLLARET TSHIRT IF I HAD THEM MADE?
Friday
Gerrie pisapia posted a blog post

Colonoscopy

Is it possible for MM to be triggered by medical procedures such as a colonoscopy?See More
Aug 21
Gerrie pisapia commented on Sheryl Martin's blog post Northwest Wind Patterns
"That's funny. My husband has only gotten this may-July. Thought it was coincidental"
Aug 21
Gerrie pisapia posted a discussion

meningitis again

My husband recently had meningitis for the third time. Now they have diagnosed it as Mollarets. We are hoping for feedback to find commonalities. We don't know what the trigger is, or if there is a way to avoid getting this again. He spent 12 days in hospital and 3 in rehab. He lost 20 pounds in the 2 week time. he seemed to have all of the symptoms except sensitivity to light. He even had a seizure.gerrieSee More
Aug 21
Profile IconJohn and Gerrie pisapia joined Mollaret's Meningitis Support Group
Aug 21
Christel is now a member of Mollaret's Meningitis Support Group
Aug 18
Gaye left a comment for Gaye
"I was diagnosed in 2007. But first real sickness in 2002. In 2002 15 days in the hospital on 4 anti virals intravenous and followed by 15 days of acylavir intravenous not anouther symptom til 2007 caught it at the headache hospital stay 15 days…"
Aug 14

Forum

meningitis again

Started by Gerrie pisapia in Sample Title. Last reply by M from Finland 1 hour ago. 2 Replies

My husband recently had meningitis for the third time. Now they have diagnosed it as Mollarets. We are hoping for feedback to find commonalities. We don't know what the trigger is, or if there is a…Continue

medication helps!

Started by M from Finland in Sample Title 1 hour ago. 0 Replies

I have had medicine valavir 500mg+500mg in February. I took every morning and every evening one pill. I did not have so much headaches as usually. But. I was feeling so bad, I just wanted to throw up…Continue

Shingles outbreak... What's next?

Started by Cheryl in Uncategorized. Last reply by Joyce on Monday. 1 Reply

Super curious to find out how many of us have had an outbreak of shingles prior to a MM episode. About 2 weeks ago I began to notice that my right upper groin area was numb, in just one spot. The…Continue

Tags: Shingles

Dermatological issues???

Started by Patricia W. in Uncategorized. Last reply by Natalie Friedman Aug 8. 10 Replies

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

Tags: Molleret's

 

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Blog Posts

Colonoscopy

Posted by Gerrie pisapia on August 21, 2015 at 8:53am 0 Comments

Is it possible for MM to be triggered by medical procedures such as a colonoscopy?

WOULD ANYONE BUY A MOLLARET TSHIRT IF I HAD THEM MADE?

Posted by Michelle Light Whittemore-Whitt on August 2, 2015 at 6:52pm 1 Comment

I thought it would be awesome to bring awareness to this debilitating disease/syndrome by writing a book.  That book came to a halt when my husband got sick and I started getting worse in my own illness.  Well, I think its high time to get this book finished.  Who's with me?  Who wants to help?  Outside of the book, we also have an opportunity to get these T-shirts done at a decent price if several order them.  Hit the like button if you might purchase a T-shirt and that will give me an idea…

Continue

Anyone else with MM have cancer?

Posted by Catherine Reynolds on July 15, 2015 at 11:09am 1 Comment

I have been diagnosed with two cancers in the past four months: Terminal Stage 4 pancreatic Neuroendocrine carcinoma (the Steve Jobs cancer that can allow you to live longer, possibly years) and this week, Breast cancer, stage zero (very early, very contained). I am 56 years old. I have had MM for 25 years, my first episode was near fatal meningo-encephalitis (the virus was infecting the brain in addition to the meninges).



My subsequent episodes (the fourth and onward) are infrequent… Continue

Intermittent Fasting

Posted by Rich Diehl on May 17, 2015 at 10:31am 3 Comments

     Has anyone every tried intermittent fasting. I just started on the 5:2 diet, where you take two days of the week and eat less than 500 calories (modified fasting). For the first few weeks, it gave me a mollarets flare up for a few days each time I fasted. However, each week that passes I seem to get fewer flare up. Anyone else have experience with this?

Rich

 
 
 

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