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Conditions and Diseases > Meningitis Forum > benign recurrent aseptic meningitis
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Q: benign recurrent aseptic meningitis
asked by: bethanyseay2 on December 1st, 2008
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I have been diagnosed with benign recurrent aseptic meningitis (Mollaret's Syndrome). However mine is not caused by Herpes Simplex 2. Therefore, there is no treatment for my illness. I am looking for any advice, specialists, or research studies. I have had 5 attacks in 2 months. Three of which had led to extended hospitalizations. It is impossible to maintain a normal life this way. Please help!
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rooted
replied on December 3rd, 2008
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Aseptic meningitis is usually a harmless disease, and people usually have full recovery in 5 to 14 days after symptoms start. Doctors often will recommend bed rest, plenty of fluids, and medicine to relieve fever and headache. More information from the Centers for Disease Control:

http://www.cdc.gov/meningitis/viral/viral- faqs.htm
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bethanyseay2
replied on December 3rd, 2008
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thanks
I know, but my case is recurrent. it continues to come back. I have had 5 attacks from different causes in 2 months.
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rooted
replied on December 4th, 2008
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Id' suggest that you contact the CDC with your specific questions. They should know where to direct you and to recommend practitioners or associations that can help. Alternatively, you can request more information from these organizations:

National Institute of Allergy and Infectious Diseases: http://www3.niaid.nih.gov/
National Institute of Neurological Disorders and Stroke: http://www.ninds.nih.gov/
National Center for Zoonotic, Vector-Borne, and Enteric Diseases, Division of Foodborne, Bacterial and Mycotic Diseases: http://www.cdc.gov/nczved/dfbmd/
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thenagain
replied on February 5th, 2009
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I also have Mollaret's syndrome
I am four days into my sixth episode of Meningitis. The headache and back pain is bad enough, but the spinal tap just makes it all worse.

My attacks were more spaced out than yours; I have gone from three months to 5 years between attacks. Since there is no treatment, other than pain management, I choose not to stay in the hospital and simply go home with my painkillers and sleep for a few days until the symptoms eventually fade away. They test me each time for Herpes, AIDS and other immune deficiency disorders but the results always come back negative.

In my case, four of the episodes happened during very stressful periods, i.e. university exams and a new, very stressful job, but since the other two happened while I was returning from vacation, I'm not sure there is any correlation.

I have found out more information about my condition from the internet than I ever got from my doctors. In fact, the last two times, the neurologist who was on duty at my local hospital was not at all aware of Mollaret's syndrome until I told them about it.

Good luck with your research on the net. There is not a whole lot of information available, and unfortunately, no one can really tell us what makes us candidates for this syndrome. There seem to be too many variables.

dj
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wifenodoubt
replied on March 1st, 2009
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chronic meningitis of unknown etiology
my husband has been suffering with chronic meningitis of unknown etiology since Jan 2008, (1 yr, 2mos). His meningitis symptoms are weekly, He always has a headache, 3 to 4 days a week they are severe headaches, stiff neck and fever/chills. He has the dizzy/heavy headedness, fluctuating hearing loss, hearing sensitive and eye blurriness, auras and floaters all the time. There is no cure, however, the only treatment is steroids and pain management. In repeated reviews of his spinal fluid, his doctor advises he has a text book case for chronic meningitis. Has anyone heard or know of anyone having this type of meningitis?
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TooManyTimes
replied on March 14th, 2009
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It isn't easy, but it is possible
My first episode of viral meningitis was in the early 1980s. 25 years ago there was very little known about it and hardly an internet on which to research. I continued to have episides once or twice a year for years. More than a dozen total. First one knocked me out of life for a few months. Last episode that I can confirm was in 1997. In 1997, I recovered within a week. My doctor had told me my immune system would do a better job each episode, and it has. I continue to periods of a day or two where I feel very sick, but not much worse than a bad case of the flu. I had some specialists tell me that meningitis doesn't recur. Duh, really? Why have I been hospitalized and been confirmed with lumbar punctures more than once?

During my worst periods, I had a great deal of blood withdrawn and tested. Nothing.

No magic in my recovery, other than a complete change of lifestyle. Must avoid chemicals as much as possible. This means no perfumes, scented products, processed foods, synthetic fabrics, and so forth. My worst period was when I worked in a specific building; who knows what was there triggering me. Once I detoxified, I was able to tolerate some stuff but when I get sick it can usually be linked to an intensive exposure to a chemical.

I continue to maintain a very healthy diet, continue to exercise despite the routine pain, and I continue to take one day at a time. I don't live in a city and we built a healthy house.

This is just what it has been for me. My doctor calls me a canary in a coal mine.
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jparsons
replied on June 3rd, 2009
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REcurrent Aseptic Meningitis
Ok, there are people like us out her who suffer from this darn recurrent aspetic meningitis. I too have had it at least three times. Hospitalized all three times. Went to Mayo Clinic for answers. They told me my recurrent meninigitis is linked to my chronic migraines. There is no specialists out there to help. I do not have herpes, or any known cause for this after many many tests and procedures. There has got to be someone who can help.

Julie/ Chicago Illinois
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Momto3girls
replied on July 30th, 2009
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Link to Vaccine?
Just a quick question....did any of you had the meningitis vaccine and were you healthy prior to the vaccine if you in fact had it? I ask because my 15 year old daughter had the meningitis vaccine last September and has had recurrent "viral" illnesses almost every 4-8 weeks since. Illnesses always look the same...fever, headache, sore throat and neck stiffness/pain. They resolve in about a week, but knock her out completely when present.
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jparsons
replied on July 31st, 2009
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The meningitis vaccine only helps the bacterial Meningitis. It will not help viral or aseptic or recurrent meningitis. I asked hoping too that it would stop the reoccurence. Too bad for us! Momto3girls, did you daughter have spinal taps to verify viral meningitis? What doctor are you seeing regarding her getting viral meningitis after the vaccine? A Nuero or your regular GP?
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Momto3girls
replied on July 31st, 2009
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She has not been diagnosed with anything specific as of yet. We are just starting to develop a theory of what is going on. I took a perfectly healthy girl in last September to get this vaccine, and she has been sick intermentally since. The symptoms and duration are always the same, and she has tested negative for strep, mono multiple times, and CBC reveals nothing of significance. I find the timing of the vaccine and her illnesses suspect and am trying to find a reason why.
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jparsons
replied on July 31st, 2009
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Momto3girls,
She needs a spinal tap to check for meningitis. It is the only way to completely confirm meningitis. If it is viral or bacterial it will show that through cultures of the spinal fluid.
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