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

Cheryl Newman commented on Cheryl Newman's photo
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"This was the first time I had it and I was still in the ER. It wasn't even diagnosed as hsv2 until the 3rd time I had it."
11 hours ago
Shaun commented on Cheryl Newman's photo
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"Oh this looks like a bad bout, why did they ask you to wear a mask? MM is not infectious via respiratory droplets. "
21 hours ago
Shaun replied to Rob's discussion Hsv researchers
"Its interesting that many people with MM including myelf never seem to get outbreaks of lesions or ``bumps` as caring docs like to call them, it almost seems like we get `inbreaks` instead, people may say wow your so lucky you dont get oral or…"
22 hours ago
Shaun commented on Shaun's blog post IVIG + Acyclovir success
"@Catherine Reynolds It can be pricey more over is finding a doctor caring enough to let you use it, dont let them tell you its not usually used for MM, it has worked better for my friend than any other treatment, the IVIG infusions help to modulate…"
22 hours ago
Catherine Reynolds commented on Shaun's blog post IVIG + Acyclovir success
"Thanks. Will inquire w docs."
yesterday
Beatrice Klingman replied to daniel's discussion memory is gone and going quickly
"If you negotiate your bill within 90 days of discharge they will reduce your debt. Myself, I was not thinking well enough to Speak up for myself for 6-8 months, so I got stuck with the bill."
yesterday
Beatrice Klingman replied to daniel's discussion memory is gone and going quickly
"In response to memory loss. One of my neurologist put me on Namenda. I know it is for Alzheimer's , but it really Brought me back as far as memory. I still have "dull" days, but I won't give up the my Namenda."
yesterday
Edie Cannon replied to Michael Hrehor's discussion Mollaret's support group on Facebook
"Hi. I just asked to join too. Thank you for taking the time to make it happen."
yesterday
Edie Cannon replied to daniel's discussion memory is gone and going quickly
"Lisa, I am very surprised by your daily dose. 3200 mg is significantly higher than my 500 mg daily. I do increase my dose to 1500 mg daily for 7-10 days during each episode. It has kept me home and out of the hospital. I have so many memory loss…"
yesterday
Edie Cannon replied to Addie owens's discussion Updated number of reported cases
"I sold pharmaceuticals for over 15 years and I learned a lot about the reporting process during these years. The reason most physicians don't report is because it is incredibly time intensive. And with all that they must do to satisfy their…"
yesterday
Edie Cannon replied to Michelle Ferguson's discussion Finding the fire
"I too suffer with intense abdominal pain during flares. I am lucky and I am only on my 6 th known episode. Mine too started in my twenties. I had chicken pox when I was young and again in my early twenties. Wasn't long after that when I had my…"
yesterday
Edie Cannon replied to Shaun's discussion Powerful new Anti Viral" Brincidovir CMX 001"
"That would be amazing! I will do research. Thank you for sharing. Do you know what company had the rights to this trial medication and have you heard of any trials?"
yesterday
Profile IconHelen Luscombe, Hannah Peirce, Angela and 5 more joined Mollaret's Meningitis Support Group
Tuesday
Jennifer Doe replied to Jennifer Doe's discussion Pain Meds
"Thank you for the reply. They have put me on percocet up to four times a day  and gabapentin three times a day. Makes me zombie like and still have pain. Will print this out to see if they think these meds would be better."
Saturday
Cynthia McCoy replied to Rob's discussion Hsv researchers
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Jun 22
Cynthia McCoy replied to Rob's discussion Hsv researchers
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Jun 22

Forum

Hsv researchers

Started by Rob in Sample Title. Last reply by Shaun 22 hours ago. 7 Replies

I am beginning to think the idea that HSV triggers a harsh reaction, but the result is hyperimmunity, may be correct. Has anyone tried contacting the top HSV researchers?

memory is gone and going quickly

Started by daniel in Sample Title. Last reply by Beatrice Klingman yesterday. 13 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

Mollaret's support group on Facebook

Started by Michael Hrehor in Sample Title. Last reply by Edie Cannon yesterday. 7 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

Updated number of reported cases

Started by Addie owens in Sample Title. Last reply by Edie Cannon yesterday. 4 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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IVIG + Acyclovir success

Posted by Shaun on June 12, 2016 at 8:00am 8 Comments

Just would like to report the success another sufferer i am friends with here in Shanghai had with using IVIG and daily ayclovir 500mg, Since he started the IVIG last year he has had 0 MM flare ups within almost a year ( he usually got 3-4 before)

The specialist neuro immune physician here at Huan Shan hospital believes that a big part of what causes MM is not the actual HSV 2 virus but an hyper sensitive immune mediated reaction to the presence of HSV 2 in the spinal…

Continue

Knee pain

Posted by Ken DuBose on June 9, 2016 at 5:43am 1 Comment

I had a bout of MM about three months ago and now I am have severe knee when trying to get out of bed. Anyone having this problem?

Fighting the battle from afar.. In NZ. Advice for me?

Posted by Haley on May 25, 2016 at 7:18pm 3 Comments

Hi all,

I've been battling for the last 7 years with reoccurring meningitis, I'm 26. I've been admitted to hospital twice but spend most my outbreaks hiding in my room as I feel the hospital don't ever really seem to know or do much to help. Recently I've become a mother which makes hiding for days at a time impossible. I suffer from lesion outbreaks on my legs of HSV a lot. Have recently been referred to a neurologist to gain a better understanding of this condition and help me get my… Continue

My Mollarets story from the uk!

Posted by Heather on May 24, 2016 at 8:20pm 2 Comments

Hi everyone my name is Heather I live in milton keynes in England. I had my first attack in 2006 I was ill at home in bed thinking I had a cold went to hospital and the last thing I remember is fainting. 2 weeks later i wake up to learn I had viral menigitis as I'd left it so long to go hospital I made my self gravely ill! So I went home, got better until a year later I had an explosion of pain in my head, started being sick, couldn't look at the light and I was stiff from the top of my spine… Continue
 
 
 

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