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

Profile IconKris K., TP Boyd and Marie Hoff joined Mollaret's Meningitis Support Group
Wednesday
Lisa Skogstad liked Brenda Mayer's blog post No Title
Mar 20
Lisa Skogstad replied to Patricia W.'s discussion Dermatological issues???
"Yes, I am currently experiencing petechial purpora. I didn't make the connection to MM until my blood work came back normal. That left a viral source (in my case, that is). I only had mild symptoms of MM last week, but the HVS2 seems to be…"
Mar 20
Lisa Skogstad is now a member of Mollaret's Meningitis Support Group
Mar 20
Beatrice Klingman left a comment for SUSAN MAGOWITZ
"Welcome Susan, Please be hopeful, we are learning more ever day"
Mar 20
SUSAN MAGOWITZ is now a member of Mollaret's Meningitis Support Group
Mar 13
Juliana Carson liked Don mckay's blog post No Title
Mar 9
Juliana Carson liked Helene Smith's blog post finally back... with most of my story...
Mar 9
Juliana Carson liked Brenda Mayer's blog post No Title
Mar 9
Juliana Carson shared Kenneth Kailey's blog post on Facebook
Mar 9
Juliana Carson shared Brenda Mayer's blog post on Facebook
Mar 9
Annie replied to Deborah Lauer's discussion Need advice
"John, how are you now? Please update if you can."
Mar 8
Juliana Carson liked John Leahy's profile
Mar 8
Melanie Braido liked S Starbuck's blog post Husband's 35 years of pain...
Mar 8
John Leahy replied to Juliana Carson's discussion Just been diagnosed !
"Welcome. It took me 10 years before diagnosis, so I count myself as one of the lucky ones. I now have 2 neurologists that look after my care plan and follow-up."
Mar 8
John Leahy replied to Ken DuBose's discussion Can MM cause chronic pain?
"Yes. My pain exists between my shoulder blades, runs up the left side of neck and into my head. Some mornings I have difficulty clenching my fists as my thumbs and fingers are stiff. Sometimes they crack. My left leg at my hip is constantly sore.…"
Mar 8

Forum

Dermatological issues???

Started by Patricia W. in Uncategorized. Last reply by Lisa Skogstad Mar 20. 8 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

Just been diagnosed !

Started by Juliana Carson in Sample Title. Last reply by John Leahy Mar 8. 7 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

Can MM cause chronic pain?

Started by Ken DuBose in Uncategorized. Last reply by John Leahy Mar 8. 23 Replies

I first contracted MM about 20 years ago.  It took months to diagnoise and I almost died before a good neurologist figured it out.  They sent my spinal fluid to the CDC and it was confirmed that it…Continue

 

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Blog Posts

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…

Continue

Medication for leg "pain"

Posted by Christina on October 1, 2014 at 9:23am 4 Comments

Hi all!

I am trying a new doctor next week. My infectious disease doctor is worthless because he doesn't feel my leg problems have anything to do with my MM. I have been under the care of a pain management doctor and been taking tramadol for close to a year. The problem is it doesn't work anymore. I eat it like candy as my legs hurt all the time. I never have relief, so taking the pain med is an all day occurance. I don't want to go on another, stronger pain med. So back to a new… Continue
 
 
 

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