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Mollarets or an autoimmune issue?
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Mollarets or an autoimmune issue?

Hi, In 2008 I was diagnosed with meningitis. I had 3 postive LPs. from May through Dec. Each bout last up to a month. I had I tested negative for: lupus, lyme, cancer, herpes (3 different ways), and all the major test you might test in CSF or blood work. MY CSF as my docs said seems to suggest a "viral" picture. I show recent activity for mycoplasma and old activity for epstein barr.
A new neuro suggested a CSF leak and we did in fact see a tiny tiny scar on the mri and I did fall of a bike years ago. But after undergoing surgery, there was no leak. I am positive for RF (38, 39) I've certainly had more then one high sed rate test, but that's not surprising. When I saw the rheumatologist he said, go see an infectious disease guy, you don't have an auto immune disease (at least not yet, except possibly Central nervous system vasculitis...which doesn't seem to likely to me since most people who have that are much much sicker then me. He also mentioned in passing, mixed connective tissue disease) And finally. It's now a year since I've had meningitis BUT I've had a headache, always in the front of my face and head, all but 10 days since then. I take topamax (200mg) and cymbalta. I also take oxycodone and fiuroscet for break thru pain daily. Unlike people with New Daily Persistent Headache, I don't have it all day. It pretty much starts around 1-3PM each day and is worse with weather and allergies. Before I was sick, I never had headaches. Now my knees just started hurting bilaterally and my fingers are getting tingly (which could be topamax). My neuro wanted to do a DHE in patient treatment but insurance turned it down. I just want a more holistic diagnosis. No one knows why I got meningitis so many times. Yes it was recurrent (and came back after the sinus surgery for the 4th time) and it lasts long enough to be called chronic. I'm negative for herpes 2, sjogrens, lupus, cancer and HIV the big things that would give you meningitis over and over again.
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Dear Dizzy,
Many thanks for posting the question through my forum.
Well i am also surprised as how you have got meningitis so many times, yet your history doesn't support a immunocompromised status.
Mycoplasma is also an opportunistic infection. Would suggest you to take a second opinion from a doctor who either is a really good General Practitioner, or is good in infectious disease as nothing else makes sense.
Also people who have low WBC count are also prone to infections.
We really need to have a real diagnosis of this condition as getting regular bouts of meningitis is not good.I will not be able to help you , for concluding a diagnosis as i have neither examined you physically nor i have seen your reports.
I hope that you are not a diabetic as that also decreases the immunity of the body.
The other reason, though rare, can be co-related to poor hospital hygeine causing recurrent meningitis.
Feel free to discuss more, as what do you feel (about hospital hygiene and Diabetic status)
Thank you for you answer. I am not diabetic. I was actually only hospitalized the first time, for 3 nights. Strangely, besides the meningitis, I didn't catch a cold or any other disease the whole time. Nothing else about me appeared immune compromised. The hospital that I was in is very clean and since I was in the ICU, it was an extremely sterile environment (they wouldn't even allow flowers).  I was given antibiotics that would have killed off mycoplasma (I forget which one). Overall I was given probably 3 months worth of antibiotics in 2008. The infectious disease doctor said he thought I had mollarets from herpes even though I tested negative 3 times. I had bad mono (Epstein Barr) but I was over15 years ago and the titer test said that it was not active.

So I've seen a rheumatologist, two neurologists, and an infectious disease specialist. I have not left the country in years, and I mostly live and work within a 5 mile radius in upstate New York. My recurrent meningitis bouts last longer by weeks then most mollarets. (Although, thankfully, it's now been a year.) And now I have headaches every day so I feel like I still need to know what I "have" or "had". Is it possible that I do have an auto immune issue but other issues haven't shown up yet?
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