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

Jennifer Doe replied to Michael Hrehor's discussion Mollaret's support group on Facebook
"Hi Michael I just asked to join the group, my facebook is AJ Devine. Thank you."
yesterday
Michael Hrehor replied to Michael Hrehor's discussion Mollaret's support group on Facebook
"I saw that, but it is a page and not a group so people can't interact. I saw that you joined the group, that is great. I don't know if the two can be linked, but I am sure we can figure something out."
yesterday
Saundra posted a photo
yesterday
Jennifer Doe commented on Saundra's blog post Advice appreciated
"Hi Catherine. You continued having outbreaks of HSV2 with the high doses? I ask because I do as well that is why the Mayo has made my dosage so high. I am worried about the effect on my kidneys. The only thing they have found is that I metabolize…"
Monday
Catherine Reynolds commented on Saundra's blog post Advice appreciated
"The docs are indeed pretty clueless. For about 14 years I was on huge doses, like 3 grams/ 3000mg a day. Then another doc said that was WAY too high and put me down to 400-800 mg a day. Luckily I never had any serious side effects during or after…"
Monday
Lisa Mongan commented on Tracey Martel's blog post Steroids
"Hi Tracey, I've had MM since 2007. After a few yrs, my Drs came up w a hospital protocol for me during an attack. This includes high dose IV steroids for 3-5 days. While I can't have it more than 4 times a year, it does help at the time,…"
Monday
Jennifer Doe commented on Saundra's blog post Advice appreciated
"My doctor has prescribed 1000mg three times a day for life. I know of one person who just had HSV2, not Mollaret's and she took 1000mg a day for many years. She stopped for a month and had an outbreak. She is now back on 1000mg for life. Good…"
Monday
Saundra posted a blog post

Advice appreciated

I had my first bout of meningitis in Jan. '06. I was in the hospital for 3 days. Then in July '10 I got meningitis again. Was in the hospital for 5 days. I was so much worse the second time. They tested spinal fluid and said I had HSV2 meningitis. I had never previously been diagnosed with HSV2. No other outbreaks. I was sent home with a pic line with Acyclovir. It was awful, awful, awful. I couldn't remember what color my toothbrush or what street I lived on. They weren't sure my memory would…See More
Sunday
Tracey Martel replied to Michael Hrehor's discussion Mollaret's support group on Facebook
"Hi Michael, I already have this support group on facebook. I just couldn't figure out how to link the two. "
Sunday
Michael Hrehor posted a photo

2009 Mollaret's Flare Up

Getting IV treatment of Acyclovir
Sunday
Profile IconJanine smith, Menin, Lisa Mongan and 9 more joined Mollaret's Meningitis Support Group
Sunday
Jenny Schultz is now a member of Mollaret's Meningitis Support Group
Apr 10
Michael Hrehor replied to Michael Hrehor's discussion Mollaret's support group on Facebook
"Just approved you.  The group also allows you to add people if you know anyone else that would be good.  Thanks for joining!"
Apr 4
Gwen O'Leary replied to Michael Hrehor's discussion Mollaret's support group on Facebook
"Great idea!!!  I've asked to join."
Apr 4
Jennifer Doe left a comment for Debora daniels
"I usually get an outbreak hsv2 a couple days after onset of meningitis  symptoms."
Apr 1
Debora daniels left a comment for Debora daniels
"I am trying to understand more about my meningitis symptoms and I am starting to see patterns with symptoms now that I have reoccurring meningitis as I now know I have it long term. I am in need of more information to help me, does anyone know where…"
Mar 31

Forum

Mollaret's support group on Facebook

Started by Michael Hrehor in Sample Title. Last reply by Jennifer Doe yesterday. 5 Replies

I was talking with some folks over on the Meningitis Now forum and there were several people that were hoping for a Facebook group to communicate with each other, so I just went ahead and did it.  I…Continue

Tags: Facebook

Pain Meds

Started by Jennifer Doe in Sample Title. Last reply by Michael Hrehor Mar 31. 5 Replies

 I finally have an appt. with a pain management doc. My PC is refusing to give prescriptions at this point. I have HSV 2 outbreaks at least once every two weeks on my legs, neuropathy from that,…Continue

Has anyone had a prescription flare up their Mollaret's?

Started by Michael Hrehor in Uncategorized. Last reply by Michelle Light Whittemore-Whitt Mar 30. 3 Replies

I started taking lamotrigine Friday to help as a mood stabalizer, but since then I have been fighting off a flare up and been having trouble sleeping.  I have a call into the psychiatrist about it,…Continue

Yoga and MM

Started by Michael Hrehor in Sample Title. Last reply by Gwen O'Leary Mar 29. 1 Reply

I have Mollaret's and have tried yoga before to help with my brain injury, but I flared really bad afterwards. Has anyone else experienced anything good or bad related to MM. For me it seems like…Continue

 

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Advice appreciated

Posted by Saundra on April 24, 2016 at 6:00pm 3 Comments

I had my first bout of meningitis in Jan. '06. I was in the hospital for 3 days. Then in July '10 I got meningitis again. Was in the hospital for 5 days. I was so much worse the second time. They tested spinal fluid and said I had HSV2 meningitis. I had never previously been diagnosed with HSV2. No other outbreaks. I was sent home with a pic line with Acyclovir. It was awful, awful, awful. I couldn't remember what color my toothbrush or what street I lived on. They weren't sure my memory would… Continue

I'm back

Posted by Ken DuBose on March 29, 2016 at 4:46pm 1 Comment

I have had 9 episodes in my first ten years and I been free of any problems for 11 years.

Whamoo 

Just got out of hospital with a big one.  Lucky to find neurologist that knew what it was.

On the road to recovery.

Healthy protocol that works +Vaccine trick for HSV

Posted by Shaun on March 4, 2016 at 9:30am 1 Comment

Hi Guys,

Since a lot of people here suffer from photophobia or dizzy spells after bouts i`ll try and keep this as short as possible, the following protocol is something i have put together from my own exhuastive research , personal experience and from top neurologists here in Shanghai who actually understand a good bit about our condition.

The following protocol has reduced my HSV 2 induced MM bouts to roughly 1 per year, previously i was getting around 5 per…

Continue

MY Story

Posted by stevewonder on February 26, 2016 at 12:51pm 0 Comments

While I've told this story many times, only we can appreciate the impact MM has on our lives. I tell it to help others.

I am a 47 year old male and have suffered the symptoms of MM for 40 years. It is suggested I contracted it when I had the chicken pox, a form of herpes, as a child about 6-8 years of age.

As a kid I had intermittent headaches, some were severe and caused vomiting, usually after some kind of party or bbq. My parents would say I got headaches when I got excited…

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