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

Tracey Martel commented on Michelle Light Whittemore-Whitt's status
"Merry Christmas Michelle."
Wednesday
Tracey Martel liked Rich Diehl's blog post Lugols iodine gave me my live back after 20+ years of worsening symptoms.
Wednesday
Profile IconNatalie Incledon and Jenn Myers joined Mollaret's Meningitis Support Group
Wednesday
Michelle Light Whittemore-Whitt posted a status
"Merry Christmas to all my friends and supporters!"
Wednesday
April commented on Lisa Denke's blog post Kidney Damage from Acyclovir/Valtrex
"Hi Lisa. My husband is currently in the hospital for his sixth outbreak of MM since 1997. He is on IV acyclovir and is BUN came back elevated for the first time in our expeiences. The Drs had him on torodol, which has been a miracle drug for his…"
Dec 3
Mdsaladin liked S Starbuck's blog post Husband's 35 years of pain...
Nov 30
Mdsaladin is now a member of Mollaret's Meningitis Support Group
Nov 30
Rich Diehl posted a blog post

Lugols iodine gave me my live back after 20+ years of worsening symptoms.

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 for weeks…See More
Nov 25
Rich Diehl replied to Christine Henkel's discussion long term mollarret's sufferer...need info
"I get the weird pulsating pressure sensation in the brain stem region also. Never knew how to describe it. I've never had a spinal tap, because I was afraid of side affects. I don't think they are necessary when there are other less…"
Nov 25
Rich Diehl commented on Rebecca E Dekle's blog post Spinal Fluid Indicating HSV Meningitis
"I had similar experiences with doctors. For a long time I bought valtrex from Canada, because I didn't want to have spinal taps, and the doctors wouldn't give me valtrex unless I had them. I consider this very bad medicine, since it's…"
Nov 25
Rich Diehl commented on Sheryl Martin's blog post Colloidal Silver?
"     I have used colloidal silver for years and I found it fairly effective at reducing symptoms of hsv mollarets. I did a lot of research on this. I'm not a doctor, but I have a background in physics. The key is to use…"
Nov 25
Rich Diehl is now a member of Mollaret's Meningitis Support Group
Nov 21
David Hanson is now a member of Mollaret's Meningitis Support Group
Nov 11
Tracey Martel posted a status
"Just wondering if anyone has tried Cymbalta?"
Nov 5
Betsy Goodman replied to Betsy Goodman's discussion Flying while having meningitis symptoms
"Thanks, Catherine! I have had various & conflicting advice from docs, so wondered if anyone has experience with flying. I've got a trip coming up with my daughter, who has MM, and I'm hoping she stays healthy."
Nov 5
Jan Adams commented on Tracey Martel's blog post MM and Social security
"I guess I was lucky. With an attorney's help, I got it on my second request. I've been on it now for a year so I had about six months with no income except a disability check from insurance I had been paying for at work. I don't make…"
Nov 2

Forum

long term mollarret's sufferer...need info

Started by Christine Henkel in Sample Title. Last reply by Rich Diehl Nov 25. 8 Replies

Hi....just got diagnosed after a few weeks in the hospital.  My first bout of meningitis was when I was 17.  Over the last 30 years, I would have recurring outbreaks every couple of years, although…Continue

Flying while having meningitis symptoms

Started by Betsy Goodman in Sample Title. Last reply by Betsy Goodman Nov 5. 2 Replies

Does anyone know if it is ok to fly in an airplane while experiencing symptoms? Continue

What do you tell people?

Started by Gwen O'Leary in Sample Title. Last reply by Lisa Denke Sep 29. 5 Replies

I'm a patient at the hospital I work at, so of course coworkers who treat me know what's up; I hope they practice confidentiality.  What I'm wondering is what you tell people who ask why you keep…Continue

auto immune diseases

Started by Deborah Ballard in Sample Title. Last reply by Lisa Denke Sep 26. 9 Replies

WOW! haven't been on here for quite a while (having so many other medical issues) when I joined this site I think there were 6 members!  Anyway, I have a question for all my fellow Mollaret members:…Continue

 

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Blog Posts

Lugols iodine gave me my live back after 20+ years of worsening symptoms.

Posted by Rich Diehl on November 25, 2014 at 6:41pm 0 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

Kidney Damage from Acyclovir/Valtrex

Posted by Lisa Denke on September 26, 2014 at 11:11am 2 Comments

I have blood tests monthly for kidney damage, and no damage despite high doses for months on end. I want to share the data so people have it.  In medical papers, they talk about kidney failure, but it seems to be only people who are on IV's, not pills.  I have never been on an IV, only pills.

I'm not saying the dose I'm on would be ok for everybody, but here's the data:

DOSES (per day)

Prior to July 2013 Acyclovir or Valtrex at "normal" doses.  Sometimes I was…

Continue

Spinal Fluid Indicating HSV Meningitis

Posted by Rebecca E Dekle on September 12, 2014 at 4:30am 9 Comments

I jut had a thought the other day. Has anyone gone to the hospital, had a spinal tap done, and it DID NOT show meningitis? I just asked this because I wondered if it is always there in our spinal fluid because of mild to moderate day to day symptoms. Every time I have went, they found it, but I'm having so many moderate bouts, I am on my last string in going to the hospital. Every time I go, it's the same thing a spinal tap, and I really get scared now because I had a very bad experience…

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