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

Jennifer Doe commented on Rebecca E Dekle's blog post Is there any doctor that truly has a clue?
"Mayo is a specialized clinic that is highly regarded in the medical community. All of the doctors I have consulted with agree that acyclovir helps, but does not cure. I am going to neuro tomorrow will keep you posted on what they say!"
20 hours ago
Melissa commented on Rebecca E Dekle's blog post Is there any doctor that truly has a clue?
"What is the Mayo clinic I'm from uk so never heard of the Mayo however I'm currently waiting to be seen by Peter gilbertson unit who specialise in heads and necks as for the mollaretts they basically said this is for life and acyclovir can…"
yesterday
Cheryl Newman posted a photo
Feb 1
Annie replied to Dennis Newman's discussion Brand new to this site.
"The legs are innervated by the many of the same nerves that innervate the genitals. A dermatome map will make it clear. Hope you'll have a better time with 2 grams valacyclovir than your previous antiviral trial."
Jan 30
Jennifer Doe replied to Dennis Newman's discussion Brand new to this site.
"Anytime! This is a hard diagnosis and not many doctors know about Mollarets. We have to help each other!"
Jan 29
Cheryl Newman is now a member of Mollaret's Meningitis Support Group
Jan 29
Dennis Newman replied to Dennis Newman's discussion Brand new to this site.
"Thanks for you help and info. Please keep us posted on any update. Your awesome, Dennis"
Jan 29
Jennifer Doe replied to Dennis Newman's discussion Brand new to this site.
"I am the only one with Mollarets. My husband tested positive for HSV2, but is asymptomatic. Almost 40% of the population has the HSV2 virus dormant in their system. I have had this for over seven years. My husband was the medical home manager at…"
Jan 29
Dennis Newman replied to Dennis Newman's discussion Brand new to this site.
"I am little confused. Do both of have this are just you? How did you find out about the VA San Antonio treatment? How long have you suffering?"
Jan 28
Jennifer Doe replied to Dennis Newman's discussion Brand new to this site.
"We are now in Florida. Neither of us have ever had a genital outbreak. I kept getting spots on my legs and docs thought it was shingles. We finally did a punch biopsy and it came back positive for HSV2. You can imagine how much trouble my husband…"
Jan 28
Dennis Newman replied to Dennis Newman's discussion Brand new to this site.
"Great info. Do you live in Sa area? We live 50 miles north of Houston and use the VA hospital there. Both of us are retired Navy. The funny thing is we have been married 28 years and never had a Herpes outbreak except in her spinal fluid."
Jan 28
Jennifer Doe replied to Dennis Newman's discussion Brand new to this site.
"Dennis my husband is also retired military 30 years in the Navy. He suggested that if you have Tricare maybe you can get a referral to Willford Hall military medical center in San Antonio to the infectious disease dept. The latest info he has been…"
Jan 28
Jennifer Doe replied to Dennis Newman's discussion Brand new to this site.
"There is a test for it with a spinal tap. That is the only way that I am aware of to difinitively diagnose Mollarets. Unfortunately it is very hard to get the Mollarets cells to show up. Most people have said that if the test is not run in the first…"
Jan 28
Dennis Newman replied to Dennis Newman's discussion Brand new to this site.
"Since is no test for this is it just the herpes 2 that makes it Mollaret?"
Jan 28
Dennis Newman replied to Dennis Newman's discussion Brand new to this site.
"Thanks for the reply. Wife does take those Meds. At least I found a site and hope to get ideas. Thanks again, Dennis"
Jan 27
Jennifer Doe replied to Dennis Newman's discussion Brand new to this site.
"Unfortunately that is how most of us feel. The best thing you can do is be supportive, I'm lucky that my husband is awesome. He hates to see me in pain! Has your wife taken accyclovir or valtrex for the HSV2? It does help some people. I am in…"
Jan 27

Forum

Brand new to this site.

Started by Dennis Newman in Sample Title. Last reply by Annie Jan 30. 12 Replies

My wife has been in hospital 3 times the last three years for menigitis with a total of 32 days. She was told her cause is herpes 2. She had massive headaches, high blood pressure, and all other sym…Continue

medication helps!

Started by M from Finland in Sample Title. Last reply by Shaun Jan 11. 3 Replies

I have had medicine valavir 500mg+500mg in February. I took every morning and every evening one pill. I did not have so much headaches as usually. But. I was feeling so bad, I just wanted to throw up…Continue

Powerful new Anti Viral" Brincidovir CMX 001"

Started by Shaun in Sample Title Jan 10. 0 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

Is it MM? Going To Cleveland Clinic Dec 11th!

Started by Tracy in Uncategorized Dec 6, 2015. 0 Replies

Hi! I'm new to this..about a year ago someone asked me if I had been diag w MM! I hadn't ever heard of it, she gave me the info & it was like I was reading about myself! Ive been sick since I was…Continue

 

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Blog Posts

Steroids

Posted by Tracey Martel on December 11, 2015 at 8:07pm 2 Comments

I went to a new Neuroligist yesterday. He has another patient with MM. First one that didn't look at me like I have 3 heads. He wants me to try steriods in an IV next time. I have tried steriods in a pill form before. Has anyone had any luck with steriods?  I didn't find any difference on steriods before. 

Drug induced Meningitis

Posted by Gerrie pisapia on November 19, 2015 at 9:29am 2 Comments

We are also looking at drug induced meningitis. One trigger is Ibuprofen. Other are some antibiotics, etc. Look it up on the computer. very interesting.

The Doctor we are going to see in Boston has written several articles on Chronic Reoccurring Meningitis.

Cisternogram to detect leak

Posted by Gerrie pisapia on November 18, 2015 at 7:40pm 4 Comments

Ed had a cisternogram. Its like a spinal tap to detect a leak of body fluids which can cause Meningitis. There is no leak, so we are back to square one. We have an appointment with the associates of the Doctor in Boston that wrote the article on chronic reoccurring meningitis.

We are bringing all of our blood work and test results thus far, our appointment is December 2. It is with a neurologist and an infectious disease Doctor in Mass General. I will report back.

Cymbalta

Posted by Joyce on November 8, 2015 at 1:13pm 5 Comments

Has anyone tired Cymbalta? It was suggested to me but I don't like the idea of anti depressants. Not sure I want to alter my emotions when they are fine. But they say it helps with nerve pain.

 
 
 

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