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.
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
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
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
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
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
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…Continue