Mollaret meningitis

[Maleficent69]

Hey really need to find others who have mollaret meningitis. Had it 6 times in 5 years, each time is a longer stay in hospital and the after effects are real. I'm in uk, would love to chat about our experiences

[Karif]

I have it. I haven’t had meningitis since 2015. I had it 4 times in 3 years before that from 2013-2015. I take valcyclovir 1000mg twice a day. I’ve been doing that since my last episode and since then I haven’t had it again. Maybe you can try that.

[Maleficent69 in reply to Karif]

Hi thanks for reply! I was on the highest dosage for a while, but it didn't seem to have an effect with 2 episodes within 4 months of each other. Have been taken off now as it didn't work.

[Jonad724]

I was diagnosed with Mollaret's in 2010 after having multiple recurrences of VM. It was a fight though as my GP said I couldn't possibly have it since it was so rare.

I am a volunteer Community Ambassador for Meningitis Now with a special interest in supporting people post VM and with Mollaret's. Please feel free to have a look at my posts and if i can help at all please PM me. Meningitis Now offers peer support and I am happy to provide that via the charity, if that would help.