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 Michelle Light Whittemore-Whitt's discussion An educated look on the HSV Virus•Most individuals are infected with HSV-1 by 1-2 years of age
"Don't you love that term "self-limiting"? Riiiiight. Only 26 years, chronic and lasting 75 days! Cripes! I'm dying of cancer and this is still my worst plague!"
Saturday
Deborah Schiedel commented on Deborah Schiedel's blog post my husbands story from fl
"Yes they did. His Lymphocytosis WERE over a 100,000 I have found out that it also caused leukopenia from back in 2012 no one ever told us and his rbnc blood test have been showing 0.0 for low which is not good and it has to do with bone marrow that…"
Saturday
Catherine Reynolds liked Michelle Light Whittemore-Whitt's blog post SOCIAL SECURITY DISABILITY
Saturday
Catherine Reynolds commented on Michelle Light Whittemore-Whitt's blog post ***URGENT***WEBSITE PAYMENT DUE THIS MONTH - CAN YOU HELP WITH THE COST?
"I just noticed this suggestion for a convention. I really need to get better on computers! Don't know the stats of our members' geography (at least in the US). Has anyone said they are game? I would be! A TX spa would be nice! But not a…"
Saturday
Catherine Reynolds commented on Deborah Schiedel's blog post my husbands story from fl
"I had HSV meningo-encephalitis twice at least and it is HUGELY serious. I hope his docs are taking this very seriously. I wonder if there is a way to induce a light coma for a while so his brain can begin to heal? Worth asking. All this activity…"
Saturday
Catherine Reynolds commented on Michelle Light Whittemore-Whitt's blog post WHO WANTS A TSHIRT????
"I bought three. Maybe one for my MM doc.?"
Saturday
Natalie Incledon replied to Shaun's discussion Powerful new Anti Viral" Brincidovir CMX 001"
"Wow. I am watching my mum at the moment suffering in hospital, this drug gives me hope, thank you for sharing."
Saturday
Cynthia McCoy left a comment for Markesia
"welcome, and sorry you too are having to deal with this disease!!"
Friday
Cynthia McCoy commented on Catherine Reynolds's blog post An MM doc in my small town!!
"I would be so interested knowing your doctors name and contact info.. I m being sent to Washington University in St Louis, Sept 15 to an Immunologist. Before moving back to my home area in Mo. I lived in Orlando and was treated by doctors there, who…"
Friday
Cynthia McCoy liked Deborah Schiedel's blog post my husbands story from fl
Friday
Jennifer Doe commented on Deborah Schiedel's blog post my husbands story from fl
"Oh wow I hope she doesn't! I'm sorry you had to deal with a psychotic break. I guess it just depends on where the virus hits you. I've been really sick this week but will try to call when I feel up to it. Thank you for the docs name I…"
Aug 17
Deborah Schiedel commented on Deborah Schiedel's blog post my husbands story from fl
"Infectious diseases is Dr. Naresh Menesee Spring Hill Fl. Going to go to Shands in in Gainesville however my husband while. Having a psychotic break this past Monday the hallucinations took over from the disease we had to call the cops and…"
Aug 17
Catherine Reynolds posted a blog post

An MM doc in my small town!!

Attention all members near NC: an Infectious Diseases doctor recently moved from Winston-Salem to Salisbury (about 45 min north of Charlotte). He has and has had MM patients. He understood and believed everything I told him about my experiences since 1990. He was so nice, thorough, patient and he made me feel so relieved and vindicated for all those years of "you don't have HSV meningo-encephalitis, you'd be dead" - that from the late Dr. STephen Strauss, HSV guru at NIH, 1992. Years of being…See More
Aug 17
Catherine Reynolds commented on Michelle Light Whittemore-Whitt's blog post WHO WANTS A TSHIRT????
"Ordered mine! Hey Michelle, email me catherine@saxonfarms.net. Hope your uncle is ok. XO"
Aug 17
Markesia is now a member of Mollaret's Meningitis Support Group
Aug 16
Catherine Reynolds replied to susan burch's discussion question about acyclovir (or other) doseage
"I've taken both at different times in my life. Years ago a doc told me valacyclovir (Valtrex) is slightly more " bioavailable". Opinions vary and I'd be interested to see what others say. I believe they are both metabolized by…"
Aug 15

Forum

An educated look on the HSV Virus•Most individuals are infected with HSV-1 by 1-2 years of age

Started by Michelle Light Whittemore-Whitt in Sample Title. Last reply by Catherine Reynolds on Saturday. 3 Replies

The best medicine sometimes is education.  Human Herpes VirusesThere are 8 currently identified members of the human herpes virus family. They are ubiquitous and extremely well adapted pathogens. The…Continue

Powerful new Anti Viral" Brincidovir CMX 001"

Started by Shaun in Sample Title. Last reply by Natalie Incledon on Saturday. 5 Replies

This drug could be to viruses what penicillin is to bacteria.CMX 001 brincidovir Is currently on fast track FDA approval and has been used as "compassionate use" in some cases today,despite "not…Continue

Tags: herodes, HSV, fast, track, meds

question about acyclovir (or other) doseage

Started by susan burch in Sample Title. Last reply by Catherine Reynolds Aug 15. 1 Reply

I've recently been diagnosed with Mollaret's Meningitis and am meeting next week with doctors to discuss prophylactic treatment. Could anyone share what me what medicine they've been prescribed to…Continue

Shingles outbreak... What's next?

Started by Cheryl in Uncategorized. Last reply by Michelle Light Whittemore-Whitt Jul 23. 9 Replies

Super curious to find out how many of us have had an outbreak of shingles prior to a MM episode. About 2 weeks ago I began to notice that my right upper groin area was numb, in just one spot. The…Continue

Tags: Shingles

 

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An MM doc in my small town!!

Posted by Catherine Reynolds on August 17, 2016 at 8:39am 1 Comment

Attention all members near NC: an Infectious Diseases doctor recently moved from Winston-Salem to Salisbury (about 45 min north of Charlotte). He has and has had MM patients. He understood and believed everything I told him about my experiences since 1990. He was so nice, thorough, patient and he made me feel so relieved and vindicated for all those years of "you don't have HSV meningo-encephalitis, you'd be dead" - that from the late Dr. STephen Strauss, HSV guru at NIH, 1992. Years of being… Continue

Facebook

Posted by Tracey Martel on August 3, 2016 at 11:30am 2 Comments

Hi everyone, I know we have been on Facebook for a couple of years now. I wanted to let everyone know Micheal Hrehor has started a new Facebook account. He did such a wonderful job on the site I have closed the other account. I would like everyone to take a minute to check it out. It is a closed group. Go to facebook and search Mollaret's Meningitis Support Group. Hope your all well!   Tracey

my husbands story from fl

Posted by Deborah Schiedel on July 21, 2016 at 6:48pm 8 Comments

my husband was dx in 2012..thankfully i worked for an infectious disease doctor at the time when he became infected... and i knew the hosptial staff..because like all of you i had to fight the doctors in the er who kept telling me it was just my husband having a migraine and teying to send him home...call it what you want but being the over protective lioness of her family i flipped on some doctors until shift change and the other er dr came in and did a simple eval prior to the first spinal… Continue

WHO WANTS A TSHIRT????

Posted by Michelle Light Whittemore-Whitt on July 21, 2016 at 2:30pm 4 Comments

Hey members, I am happy to announce we have TSHIRTS!!!!  We have a family owned Tshirt company that has put together (2) Tshirts for us at a minimal cost.  Right now they are $15 each, but if we can get several people to order, that price will go down substantially.  Her name is Diane Light, and her store is on ETSY. (( Links are below )).  For those of you located outside of the U.S., you WILL be able to purchase shirts starting next week.  She has to get a correct weight, then add that…

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