Mollarets Meningitis: Hi everyone...im... - Meningitis Now

Meningitis Now
5,305 members1,780 posts

Mollarets Meningitis

Hi everyone...im looking for any information and a Neurologist in the State of Florida who knows how to diagnose and treat Mollarets Meningitis..any and all help is greatly appreciated

9 Replies
oldestnewest

yep I have it didn't find out till the last episode the Neurologist kept me in there a little longer and did more tests and told me that I do have it and it can be very dangerous unfortunately, well the one I have is he told me that if I don't get to the hospital quick enough that it will kill me. I am on daily tablets for the rest of my life VALTREX … but when I can afford the vitamins to build up the immune system I am going to purchase them too....the best thing he told me to do is to keep my immune system healthy and stay positive and stress free, I didn't and just had a mini bout which was close to full blown in Feb, too much everything was bad and I live alone and without any help I just lost it and got into a state and then the meningitis got me … and even though it was a mini bout maybe because im getting older (64) it has slowed me up heaps this time, I had mini bouts in the past like 6 week long headaches, ect but that was so close to full blown its taken me a while to feel better which im no where close to as yet and im finding things harder to do now. anyway after saying that I do hope you can get some relief and start to get some answers, being on here you will learn a lot and its good to be able to whinge to someone who knows why you are whinging as if you havnt had meningitis you wouldn't have a dam clue !!! would you … anyway best of luck CHIN UP XXXX you will get there :)

1 like
Reply

Can you talk more about what happens during the mini-bouts? I have had a set back since mid-March, but I am getting worse. I've seen my neurologist and got sent to other specialists. They say it's Chronic Fatigue Syndrome (CFS) as a complication of the original VM, but sometimes I still wonder if it's not the VM rearing its ugly head again. What sort of tests were done?

1 like
Reply

yes sometimes when I wake up I am quite groggy like really bad I feel off balance, exhausted and takes me till midday to come too , my head also feels very heavy and pressure, this isn't every day and some days a lot worse than others then but it could be a few days in a row quite bad specially if I go out one evening dancing well I suffer for the next 4/5 days its just all too much for my body completely exhausted and I did go out Friday and Saturday nights so I am still suffering at the moment I am so used to it now its like its just a part of living , so I just have to go with it and not push myself, its winter here now but when I was feeling like it in the end of summer, I would make a cup of tea and go and sit in the sun in the backyard and gradually I would start to feel better, this has been going on since Feb, actually the chronic fatigue is just what I feel like I am totally exhausted and have to really push myself and I am not a person to sit around and do nothing but this vm has pushed me that way quite often like yesterday. I sat down to do some computer work, I felt so dam tired I put the audio bible on and I must have fallen asleep so fast this is just after midday that is not me, at all … so my body is telling me I over did the weekend

1 like
Reply

Thanks for this. As much as you love dancing, it sounds like you might consider not doing it or doing less or for shorter periods. Many people on this site warn about overdoing it. My fatigue is much more extreme than what you describe.

1 like
Reply

oh dear im so sorry Rowi !!! I can get along, sounds like your struggling I was pretty bad the first 2 months May, I started getting better slowly and June I am still fatigued but im coping...try the anti viral vitamins a lot on this site say they are good anything is worth a try … but I feel my prayers are listened to as well, since having this last bout I have become a Christian and I do believe our prayers are listened to I have read Becky Dvorak and listened to her on YOUTUBE, specially her book on HEALING, I am now reading WORDS, all very helpful … bes of luck x

Reply

It's been 15 months for me. I was getting better and then had a setback. I'm seeing a new practitioner and I will look up the book you recommended.

1 like
Reply

I am 64yrs old !!! I am living it...if It doesn't kill me I will keep dancing I have to once in my life enjoy myself and I am now content single and enjoying my life with STITCH.NET which is in America and Australia a fabulous group of people over 50 that are wanting to live their lives most are single but there is no pressure on this site its not really a dating site and I am loving it with what ive been thru I need it with that and HILLSONG...I am content so if I die tomorrow I have enjoyed my life at last and lived x so all is good <3

1 like
Reply

isn't it terrible that on hear a lot of us know more than the dam neurologists they all should know what Mollarets is for goodness sake...what is the medical student studying these days how to speak fricken English as so far as I can see if your not Asian or indian there is no doctors here in Australia....very rarely anyway...

Reply

Have your B 12 checked and if it’s under 400 ask your Doctor to prescribe you B 12 shots to see if that helps. I have Mollarets and have had 3 really bad episodes of VM. After I started the B12 injections I’ve done wonderful. Except for the time my doctor tried to switch me from once a month to every 3 months. Bam VM again. Now I do a shot a week and have managed Fantastic since 07 .....

Reply

You may also like...