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

Catherine Reynolds replied to Gwen O'Leary's discussion Deciding
"Terrific! A little pressure off you."
yesterday
Gwen O'Leary replied to Gwen O'Leary's discussion Deciding
"No worries there. I'm Canadian and I work in the hospital I'm a patient at. I just can't afford to lose too much time."
yesterday
Catherine Reynolds replied to Gwen O'Leary's discussion Deciding
"Oh I am so glad your ID doc is there and you are getting good care. I recommend you talk to him about returning to work too quickly cause trying to get to normal -- for me --has caused a relapse. You have crossed THE most difficult hurdle and that…"
yesterday
Gwen O'Leary replied to Gwen O'Leary's discussion Deciding
"I waited about 36 hrs. Spinal flui "looks good " so I'm glad my doc was here."
yesterday
Gwen O'Leary replied to Gwen O'Leary's discussion Deciding
"Thanks so much. I actually have been admitted to hospital - this is my third in two years. Iv acyclovir and lots of iv pain meds. My infectious disease doc was here which was great because my last trip here the er doc was nasty. Didn't believe…"
yesterday
Catherine Reynolds replied to Gwen O'Leary's discussion Deciding
"First. I am not a doctor. If you have been diagnosed with ( recurrent) benign aseptic meningitis (viral) or MM and you have been seen for this most recent headache - you need to be seen first-- you can run the course of theMM bout at home. At least…"
Friday
Catherine Reynolds replied to daniel's discussion memory is gone and going quickly
"Hi Daniel - so sorry you are going through this. I am not a doctor so I am offering a patient perspective here. Memory problems are huge for me and have been since my first bout in 1990, so it's not just age. Short term memory especially. When…"
Friday
Gwen O'Leary posted a discussion

Deciding

Woke up yesterday with massive headache. Worked all day, came home and drank some beer (smart I know). It's 5:30 am, headache horrendous. I've had two hospitalizations and was sent home last time. Any thoughts? Is there any danger to staying home?
Thursday
Natalie Friedman commented on Michelle Light Whittemore-Whitt's blog post Word format Questionnaire and Tri-folds.
"This is the first time I have seen the questionnaire.  I will fill it out and get it back to you.:)"
Jan 18
Kacee is now a member of Mollaret's Meningitis Support Group
Jan 18
Joyce replied to Addie owens's discussion When to check in to hospital.... When to fight it out
" Nope Valtrex as drugs go is a fairly benign drug. Before they figured out what was wrong with me I lived on T3s and oxyneo ( a slow release form of oxycodone) those are way worse for your liver and kidneys than Valtrex. I am down to…"
Jan 14
Addie owens replied to Addie owens's discussion When to check in to hospital.... When to fight it out
"Do you worry about long term side effects with the valtrex? My doc just prescribed me oxycodone for my back/neck/headache but it says on the warning label do not take if you have a brain infection (aside from the fact that it's highly addictive…"
Jan 14
Brenda Mayer commented on Brenda Mayer's blog post No Title
"The brand is Nature's Plus Herbal Actives of the olive leaf."
Jan 14
Joyce replied to Addie owens's discussion When to check in to hospital.... When to fight it out
" I had not had a cold or flu for 15 years. After being on Valtrex for a year, I got a flu. I think because my immune system was always on high fighting the virus, I never caught colds. Now that the Valtrex controls the virus…"
Jan 14
beth left a comment for beth
"Hi Elizabeth, Unfortunately, I have not, with the exception of the doctors who made the diagnosis. My last hospitalization was preceded by a spinal tap which showed that I had the virus causing the Mollarets. I am currently being treated (after a…"
Jan 13
Elizabeth Alpert left a comment for beth
"Hi Beth, I hope you are feeling well. I live in NY as well. Have you found any doctors that specialize in this this disease? I am very frustrated. I would greatly appreciate it if you could respond. Thank You Elizabeth"
Jan 13

Forum

Deciding

Started by Gwen O'Leary in Sample Title. Last reply by Catherine Reynolds yesterday. 6 Replies

Woke up yesterday with massive headache. Worked all day, came home and drank some beer (smart I know). It's 5:30 am, headache horrendous. I've had two hospitalizations and was sent home last time.…Continue

memory is gone and going quickly

Started by daniel in Sample Title. Last reply by Catherine Reynolds on Friday. 10 Replies

Hello all, nice to meet others with the same problems. I have been diagnosed with molllarets by my doctor after my 5th hoapitalization. Every time i get a lumbar puncture, every time i get better in…Continue

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

Started by Addie owens in Sample Title. Last reply by Joyce Jan 14. 3 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

Updated number of reported cases

Started by Addie owens in Sample Title Jan 12. 0 Replies

I am curious to know how many of us are out there. I've reesched as much as I can and can only find one website that references a number from 1994. Last reported number was 50 cases in the US. DOES…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 7 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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