Good Morning - I was recently diagnosed with Mollaret's Meningitis July 16th. I started the Valcyclovir 1 Gram 3 times a day for 21 days on 7/17. I have noticed that at I run a fever in the evenings for a little while then it's back to normal. My head hurts and my back since I quit taking the Prednisone. My Neurologist said I should expect to have these side effects coming off the Prednisone. Is this normal?
The Infectious Disease doctor wants me to come see him after the 21 days is up and so does my Neurologist. Now that I'm seeing the ID Doctor, Do I really need to see the Neurologist too? All of these bills, medications, tests, lab, radiology bills, etc... is adding up even with insurance we have spent almost $3000 out of pocket in the past 3 months.
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patchofheaven
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I was diagnosed with Mollaret's in 2010 and I'm quite surprised at the interventions you are having although @dreamgnome (Michael to his friends ) has a much more severe case than I do so much so he started the Mollaret's Meningitis Association so is a better person to comment I think. It took 3 years for my family doctor to actually believe I had Mollaret's (because it's so rare you can't possible have it) and I was pretty much left to my own devices after that. After keeping a diary for 6 months (food, work, exercise) I figured out my Mollaret's is caused by periods of increased stress over and beyond what is normal in my life. My attacks last between 2-5 days, I have all the recurring signs of VM and an attack is preceded by tingling in my lips, confusion, loss of balance and then if I don't take a strong pain killer (dihydrocodeine or co-codamol) it then progresses to photophobia, stick neck and a complete inability to do anything although apparently I'm convinced I can. It is like I'm drunk my family tell me, although thanks to the VM I'm intolerant to alcohol (and caffeine and cocoa, and people ask me why I do long distance triathlons, well if you couldn't drink, have coffee and chocolate except in very very small amounts you'd do long distance triathlons!)
As there is no cure for Mollaret's, yet, this is why I am surprised at the interventions. It's not until you have a brain disease that you realise just how little the medical profession actually understands about the how it works. Neurologists know about 10-15% of actually how the brain functions (I deliver projects for the NHS so I get to meet a few of them) so I'm not sure what seeing one will do. I was only referred to a neurologist because I had health insurance, my family doctor wouldn't refer me under the NHS. I don't think anyone can actually say what medical professionals you should or should not see but you can certainly ask the question as to what the purpose of the appointment is. Mollaret's is very rare and I suppose the nagging doubt in your mind could be that they are seeing you because you are probably the only person with MM that they will see in their career?
A good place to start is the Mollaret's Association Facebook group which has members from around the world, all of whom are happy to support and help. Back in 2010 Mollaret's was a lonely experience but fortunately things are lot different.
I'm sure Michael can provide some more pointers though, take care, Jonathan
Thank you for your response. I have joined the MM group on Facebook and have been reading several old posts to try and get a handle on things. I guess I have been feeling more like an ATM machine lately spitting out cash to the doctors, hospital, pharmacies and lab corp. So do most MM patients go to an Infectious Disease Doctor for their treatment and medication?
I’ve just downloaded this app, because I have been battling to find information from “ Real people with experience “ online.
I joined the FB group which has been good but because I’ve only recently been diagnosed (based on a third relapse July 2018) so I’m coming in cold.
I read your reply to this thread & have been hoping to “stumble” upon a feed of athletes who are MM sufferers too. I saw you’re a triathlete, and I’m thrilled!
I hope you can share some thoughts,
My anxieties / Questions as a newbie are the following >
1. I’m a passionate trail runner, I was training for an endurance event & running 17kms a couple of days before my 3rd relapse. Can I ever run again, it’s been 2 weeks and it’s been really tough for me to do zero physical activity whatsoever.
2. What are your top tips based on your experience wrt physical activity?
3. I’m trying to slowly shift to a sugar-free, alcohol-free, gluten-free, coffee-free, nutritional plan ... which isn’t too difficult, apart from the 1 coffee every two /3 days, I find myself needing. Any tips?
4. Can you advise on your daily supplements & dosage, I’m trying out Lysine (1000mg) Vitamin C ( Ester-C 1000mg) and then a general female multi-vitamin. But I’m on no prescriptions like Acyclovir / Valcyclovir etc ... The doctors literally discharged me & said, “ stop at the pharmacy and grab some paracetamol Incase the headache persists ... “ I kid you not. Would love to hear your advice / comments / personal experience?
5. I’m an A-Type personality, who finds it very difficult to sit still. Im constantly trying to better understand things. This adds immense stress to my life, especially when I’m multi-tasking. The REST factor is clearly the answer BUT for how long, is there a suggested period after a relapse & hospital admission or is it purely based on a personal choice?
Sorry to bombard you but it “ sounds “ like we might have a made some similar lifestyle choices and I’m desperately trying to “understand” as much as possible as fast as possible!
Hello patchofheaven, morethanks here. It sure is puzzling, isn't it? To whom does one go at the "top" so to speak, to get the answers ( treatment?) for Mollaret's? When everything one reads about MM lines up with one's own experience (sometimes many episodes of MM ! ) and various doctors one sees are ignorant of the disease and doubtful that what they are seeing could be MM? Well... I made the decision to ask my neurologist for an ID referral at a major teaching hospital in a metropolitan area over an hour's drive from home. Waiting time for an appointment was about 3 months; in the meantime I was able to schedule a Maxillofacial Oral Surgery appointment at the same location the same day. I was looking to see if anything could be done for the numbness across my mouth and face which started prior to MM after a molar extraction and gradually since MM has spread ear to ear and includes the interior of my mouth. I've got to admit that t takes some of the fun out of eating, the fact that my cheeks, gums and lips are numb, including 7/8 of my tongue. It could be a lot worse.... I am grateful that I can still chew and swallow, and as yet no drooling. AND I do not have to pay the dentist for local anesthesia when he repairs a cavity because I am already numb! The Maxillofacial doctor took over an hour with me, getting my history and prodding the entire area, "Does this feel dull or sharp? dull or sharp? dull or sharp? (You get the idea.... it seemed to go on forever) Finally she and her trainee at this teaching hospital left the room. 10 minutes later they returned to explain that they had presented their findings to others in the practice and that there was nothing they could do for me, for this type of neuropathy. The ID appointment was better in the sense that the Physician Assistant was open to input from me as to what I thought had been going on for the previous 19 months since the initial onset of the illness while I was working in a Central American country. She was not familiar with Mollaret's herself, but thought someone had been seen in their clinic in the past who had a positive diagnosis. That was the crux of why I didn't get to first base with her, no evidence! My Primary doctor who saw me once I got back to my home in the USA 7 days after getting ill with migraine-type headaches, stiff neck, photophobia, extremely high blood pressure, digestive upset, and vertigo had sent me to a plethora of specialists.... cardiac, internist, dental, etc. and I had a range of tests: MRI, blood work including for lyme disease, TB, etc. and ALL came back in the normal range. No lp was done because the neurologist said, "It's been over 2 months since you fell ill, what you have is viral meningitis but I'm not going to put you through a spinal tap because it won't show up an active virus, it's been too long. Go home and rest" Since that time I have been seen by a Nurse Practicioner in the same office who said that my problem was 'migraines" Another doctor dismissed me as having "anxiety disorder" and handed me a referral to a psychiatrist.
@morethanks ache! What a laborious process! I wish there was more step-by-step information around best treatment, what tests are essential, lifestyle change, etc ...
I have had it since 2002 and suffer from 24 hour a day migraines. You really need to stay on top of this. It just about broke me financially fighting it but I found a doctor that respected my years of service enough that he will not charge me. I refuse to go near the VA. But you need to stay on top of this. G-D Bless you and yours. And don't let yourself suffer help is out there just keep talking to doctors. Wish I had a better response for you.
YES YES YES! Mollarets Meningitis is a completely different ball game from just a random case of viral meningitis. It is caused by the HSV-1 and the HSV-2, HERPES SIMPLEX VIRUS and it lies dormant in your spinal fluid. It can flare up at anytime. Especially if your exposed to any small virus. It's most common during the end of summer months. The problem with this Mollarets is that it also causes encephalitis. I don't have to tell you how very dangerous it is to have both viral meningitis and encephalitis at the same time. It attacks your central nervous system and can lead to seizures, coma, and yes, even death. So, don't let anyone tell you. " oh, it's just a little case of "viral meningitis". As long as it's not bacterial it's no big deal. Because it IS! My husband has Mollarets and I can tell you it's gets progressively worse each time It comes out of dormancy. The last time, 6 years ago he got encephalitis with the meningitis and it was very scary. I just found out tonight that he has encephalitis with his meningitis again and it is much worse this time. I am terrified.
Take this diagnosis extremely seriously, please. It truly is life or death
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) has a much more severe case than I do so much so he started the Mollaret's Meningitis Association so is a better person to comment I think. It took 3 years for my family doctor to actually believe I had Mollaret's (because it's so rare you can't possible have it) and I was pretty much left to my own devices after that. After keeping a diary for 6 months (food, work, exercise) I figured out my Mollaret's is caused by periods of increased stress over and beyond what is normal in my life. My attacks last between 2-5 days, I have all the recurring signs of VM and an attack is preceded by tingling in my lips, confusion, loss of balance and then if I don't take a strong pain killer (dihydrocodeine or co-codamol) it then progresses to photophobia, stick neck and a complete inability to do anything although apparently I'm convinced I can. It is like I'm drunk my family tell me, although thanks to the VM I'm intolerant to alcohol (and caffeine and cocoa, and people ask me why I do long distance triathlons, well if you couldn't drink, have coffee and chocolate except in very very small amounts you'd do long distance triathlons!)
Pneumococcal Meningitis? What should we expect?
Never diagnosed but 99.9% sure I had viral meningitis
I have viral meningitis. Please help
I had bacterial meningococcal meningitis and come through it :-)
Could I have Meningitis? 
