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

Vibeke posted a discussion

LDN against MM??

Has anyone tried or heard about LDN -Low Dose Naltrexone as a treatment against MM??
1 hour ago
Juliana Carson posted a blog post

How did we get this ???

Hi there -Having been diagnosed just two weeks ago  - i am still getting my head around this - whilst coming out of a very prolonged episode  !!!But - my biggest question is how did we get this ????I have read that a few of you don't elaborate when discussing  - and i gather that that means omitting the fact that it is Herpes 2... is that right ??/ This is what i am now struggling with !!! Is there an underlying connotation that this is Herpes 2 as opposed to Herpes 1.  I can not be the only…See More
Wednesday
Profile IconDeAnne Davis and Lenna joined Mollaret's Meningitis Support Group
Feb 20
Rich Diehl commented on Rich Diehl's blog post Lugols iodine gave me my live back after 20+ years of worsening symptoms.
"Hi Lisa,      I take 50 mg each and every day. I've been doing it more about two years. I'm thinking of cutting back a bit, perhaps to 25 not that I'm sure my body is saturated with iodine. Sometimes I take the tablets,…"
Feb 19
Lisa Denke commented on Rich Diehl's blog post Lugols iodine gave me my live back after 20+ years of worsening symptoms.
"Rich, do you take 50 mg just once when you have symptoms coming on, or do you take it for a longer period of time?"
Feb 18
Joyce replied to Juliana Carson's discussion Just been diagnosed !
"Pick away any time you want :)  "
Feb 15
Gwen O'Leary posted a discussion

Elbows!

So, about two weeks before this last episode I got a bad cold - I'm thinking that was the start - had me run down and then then the headache came.  So, when I was first symptomatic with the cold I had the usual achy feeling, except that both of my elbows really ached - a lot.  Interrupted sleep.  No tingling or anything, just really aches and radiates down my forearm.  The only relief is to straighten them out fully - not very convenient!I've been out of the hospital for a couple weeks now -…See More
Feb 15
Gwen O'Leary replied to Juliana Carson's discussion Just been diagnosed !
"I live in Nanaimo, BC, Canada. We have a good ID doc here who has been with me since my first episode 2.5 years ago. While I haven't necessarily been treated well in hospital when he's not there, he has apparently put a detailed care plan…"
Feb 15
Juliana Carson replied to Addie owens's discussion When to check in to hospital.... When to fight it out
"Hi there Addie - this has been one of my biggest questions too !! The first 6 episodes i went into hospital - had the full lumber puncture  etc... done - and each time was diagnosed with something different - ( encephalitis, viral meningitis,…"
Feb 15
Juliana Carson replied to Juliana Carson's discussion Just been diagnosed !
" "
Feb 15
Juliana Carson replied to Juliana Carson's discussion Just been diagnosed !
" "
Feb 15
Gwen O'Leary replied to Juliana Carson's discussion Just been diagnosed !
"Wow!  Welcome.  feeling kinda lucky.  I only had three episodes before being diagnosed.  Didn't start up until two and a half years ago."
Feb 14
Joyce replied to Juliana Carson's discussion Just been diagnosed !
"Welcome to the support group. It took 25 years for my diagnoses. I saw so many specialist over the years I lost count but many thought I was nuts and making my symptoms up. I was actually in some ways very happy when I got diagnosed, was nice…"
Feb 13
Juliana Carson posted discussions
Feb 13
Juliana Carson is now a member of Mollaret's Meningitis Support Group
Feb 12
Tracey Martel posted a status
"So sorry we had a spam member (Melinda baby) She has been deleted."
Feb 11

Forum

LDN against MM??

Started by Vibeke in Sample Title 1 hour ago. 0 Replies

Has anyone tried or heard about LDN -Low Dose Naltrexone as a treatment against MM??

Just been diagnosed !

Started by Juliana Carson in Sample Title. Last reply by Joyce Feb 15. 6 Replies

Hi there all of you ...Thanks for accepting me into this group !! I obviously found you the same way you all found each other  - and it was quite a relieve knowing that there are others like me once…Continue

Elbows!

Started by Gwen O'Leary in Sample Title Feb 15. 0 Replies

So, about two weeks before this last episode I got a bad cold - I'm thinking that was the start - had me run down and then then the headache came.  So, when I was first symptomatic with the cold I…Continue

When to check in to hospital.... When to fight it out

Started by Addie owens in Sample Title. Last reply by Juliana Carson Feb 15. 7 Replies

I was diagnosed in 2010 with my first very severe bout of meningitis. Lo was in hospital for 9 days, 4 of which I was relatively conscience. I was sent home with a pic line and left on IV treatment…Continue

 

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How did we get this ???

Posted by Juliana Carson on February 25, 2015 at 10:55am 0 Comments

Hi there -

Having been diagnosed just two weeks ago  - i am still getting my head around this - whilst coming out of a very prolonged episode  !!!

But - my biggest question is how did we get this ????

I have read that a few of you don't elaborate when discussing  - and i gather that that means omitting the fact that it is Herpes 2... is that right ??/ This is what i am now struggling with !!! Is there an underlying connotation that this is Herpes 2 as opposed to Herpes…

Continue

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…

Continue

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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