Recurrent meningitis, can't get to the bottom of it

[dizzyg]

Hi,
I've been sick 15 of the last 24 weeks.  My first bout with meningitis was bad enough to get hospitalized but so far no one has been able to figure out why I keep getting it and why it lingers.
I've had 3 LPs, all positive.
I've had tons of blood work and tested negative to herpes, lupus, lyme disease etc. Now I just had two test come back normal saying i DON't have a leak in my cerebral spinal fluid.

I've heard of Mollerettes but all the descriptions talk about short acute cases of meningitis that are then followed by feeling fine. I've had a head ache for the past 5 weeks every day.. I can go to work (with medication) and I'm definitely exhausted.  

Any other crazy ideas? Maybe it is autoimmune? A connective tissue disorder? I just need some creative thinking here. 15 weeks is a long time to feel lousy..

Thanks!
Diane

[jparsons]

Hi, I couldnt help but comment on your post. I have had recurrent aseptic Meningitis three confirmed times, and hospitalized all three times. Had the same tests as you. My headaches (migraines) are linked to getting recurrent viral meningitis. I ended up going to Mayo Clinic. I have had a headache since 1989. When I get the vrial meningitis, I am in pain for monthes and monthes. Not a 10  day recovery. I am talking about feeling ill for monthes. So, you might look into this link of spinal fluid showing increased protein and white cells and migraines. There are not many cases like this. I looked into autoimmune too, and it was a deadend street. I also did not test positive for any virus, lupus, herpes, lyme. I still suffer from horrible headaches, and I am now thinking about looking into Chairi formation. Hope you have a couple days of no pain. Hang in there.

[dino59]

I have Mollarets meningitis. I was also diagnosed at Mayo Clinic in Jacksonville. You don't have to test positive for herpes to have Mollarets. I don't have herpes so I cannot be treated for my meningitis. However, I met a woman from Colorado who was just diagnosed. We are trying to get a group together so that we can all talk to each other and have help with all of our problems. My email is ***@**** please everyone contact me asap.
Thanks,
Deana