Mollaret's Meningitis

[patchofheaven]

I’m new here, I was diagnosed with Mollaret’s Meningitis in July 2018. I’ve been put through hell and back with tons of Lab work, 3 MRIs, 1 MRA, 2 CTs and a Spinal tap over the past 4 months and finally my Infectious Disease doctor got my results back from the lab tests he did on my spinal fluid and I finally have a diagnosis and can start treatment.

My symptoms have been all over the place since March, but my headaches have been consistent. It’s never been a normal headache. My actually hurts, it hurts to the touch. I once described it like it felt like I was sleeping on a brick, not my pillow. After the spinal tap, we found out that I had inflammation around my brain and spinal cord. I couldn’t work, basically burned up all of my sick time – missed 3 weeks of work, plus numerous doctor visits. I had fever, double vision, lethargy, nausea, vomiting along with the headaches. My Neurologist put me on high dose of Prednisone 40 mgs/day. After a few doses the headaches subsided – it was amazing to almost feel normal again. I finally had some relief and could go back to work again. Some of the pain killers made me drowsy, so I could only take them at night.

In May, I developed a new symptom – sudden temporary paralysis. I sit at a computer mostly for work, when I would stand up to say go to the bathroom – I would get about 20-30 steps and then lose total feeling in my legs. Basically, fall over like a tree. This is has been very scary, I have only bruises to show for my falls and have yet to break any bones or worse hit my head on the floor. These episodes were frequent at first like 3-5 times a day, now I haven’t had one in 2 weeks.

Monday, July 16th I received my diagnosis from my Infectious Disease doctor. He told me that I tested positive for Mollaret’s Meningitis. I had a positive HSV2 (Herpes Simplex Virus 2) that could have caused this disease. He prescribed me Valtrex – 1000 mg 3 times a day for 21 days, then 1 per day for a year to help build back my immune system.

Does anyone else live with Mollaret’s Meningitis?

PatchofHeaven

[Getbackjojo1]

Yes, I was treated with Valycyclavir (Valtrex) same as you when I had it 2 1/2 yrs ago, but ever since then, the infectious disease doctor has had me take Acyclavir (same family of drugs as Valycyclavir, different drug) twice a day as a maintenance dosage to hopefully fend off further episodes of VM.

I had to take Valycyclavir again two weeks ago for a bad case of shingles, still taking Acyclavir daily.

[Amrita-A]

Wow, my heart really goes out to you. I wish you healing. How do they make a positive diagnosis of Mollaret's Meningitis?

I am so afraid that your story will be mine as I am positive my meningitis is caused by HSV2.

Good luck to you.

[patchofheaven in reply to Amrita-A]

I have no idea. My Infectious Disease doctor called me after my labs came back. He said that the labs from my lumbar puncture showed that I had Mollaret's Meningitis. I don't go back to see him until mid August for my follow up. I will definitely ask him more questions at that time.

[Amrita-A]

Thinking some more about what you said about the temporary paralysis and wondering if it is a result of the lumbar puncture rather than VM, but how would you even know?

Hope today is a good day.

[patchofheaven]

Actually, I was having the paralysis prior to the Lumbar puncture.

[patchofheaven]

I have insurance (BlueCrossBlueShield) through my job. We paid out of pocket expenses for all the MRIs, CTs & Lumbar puncture. Now we are getting bills from Radiologists and lab expenses that are sky high! All the prescriptions and tests have been expensive as well. It's hell to be sick!

[Lippistix]

Hello, You can find my 28 year old daughter, Rosie S' Story, via the link on the forum stories from the home page.

We found that cranial massage worked wonders for her. Her job is working with horses on pretty much a daily basis and is very physically demanding.

It is rare for a story to be so positive and we have tried to let people know that this amazing complementary therapy worked for her. It helps release the spinal fluid which VM leaves a blockage for. Rosie is pretty much cured after around 10 sessions coupled with actupuncture, although found awesome relief after only one appointment. She is now free of all pain killers and antidepressants and feels right back to her old self.

We can only let you know what worked for her. It's not for all, but has now given amazing relief for many. It seems the success could be to do with the skill of the cranial osteopath you use. So it is important to find out the osteopaths credentials and experience in this specialised field particularly dealing with VM sufferers, if you can. (Not all osteopaths realise that this helps VM sufferers, it is often carried out on young babies with birthing problems). You need an osteopath and not a therapist who mearly has some training in cranial massage.

If you find you are getting the violent headaches and feeling lethargic and depressed after a few weeks, give this complementary therapy a go, it really could be worth it and save you being on prescribed drugs, along with months, years, of unnecessary suffering.

Kind wishes and best of luck