Brain on fire and treatment

[Nickster]

Below us an article in CNN about a woman with seizures and several other issues, but, she was eventually diagnosed with brain inflammation

http://www.cnn.com/2017/08/29/health/brain-on-fire-nmda-encephalitis/index.html

What are your thoughts?

 

[Tammy]

I don't know if I missed it.............but what was the treatment?

 

[Nickster]

I don't know if I missed it.............but what was the treatment?

Ivig

 

[Gemini]

I don't know if I missed it.............but what was the treatment?

Some familiar, to us, treatments: [excerpts from Wikipedia]

first-line immunotherapy... involves steroids to suppress the immune system, intravenous immunoglobulin, and plasmapheresis to physically remove autoantibodies. A study of 577 patients showed that over four weeks, about half the patients improved after receiving first-line immunotherapy

Second-line immunotherapy includes rituximab, a monoclonal antibody that targets the CD20 receptor on the surface of B cells, thus destroying the self-reactive B cells. Cyclophosphamide, an alkylating agent that cross-links DNA and is used to treat both cancer and autoimmune diseases, has sometimes proven useful when other therapies have failed.

Other medications, such as alemtuzumab, remain experimental.

https://en.wikipedia.org/wiki/Anti-NMDA_receptor_encephalitis

 

[Gemini]

What are your thoughts?

@Nickster, by any chance was this post moved to a different thread?

Anti-NMDA receptor encephalitis, 3 patients, and the book "Brain on Fire" were featured on a one-hour program on HLN Network two nights ago...

Interestingly, the Autoimmune Encephalitis Alliance website indicates 15 different types of AE and three labs offering testing: Mayo Labs, Euroimmun, and Athena Diagnostics...

 

[Snowdrop]

I've never heard of them. For anyone who wants to have a look: https://aealliance.org/

There's a call for brain tissue samples too. (I presume from autopsy)

 

[Nickster]

I have left a message and emailed the primary neurologist and his clinic to get more information.
I think there is so much more to these different types of disease and inflamation. More diseases seem to have similarities.

 

[Nickster]

@Nickster, by any chance was this post moved to a different thread?

Anti-NMDA receptor encephalitis, 3 patients, and the book "Brain on Fire" were featured on a one-hour program on HLN Network two nights ago...

Interestingly, the Autoimmune Encephalitis Alliance website indicates 15 different types of AE and three labs offering testing: Mayo Labs, Euroimmun, and Athena Diagnostics...

This thread is under news and research

 

[Seven7]

FYI i had great success with this supplement for brain on fire:
http://www.gnc.com/l-carnitine/043112.html?productId=16513066
GNC ACETYL-L-CARNITINE ALPHA-LIPOIC ACID

I am glad I found a solution, mine was so bad I remember thinking this is why people jump without thinking when a building is burning. It take a few weeks to work but once it does is amazing.

 

[Gingergrrl]

Anti-NMDA receptor encephalitis, 3 patients, and the book "Brain on Fire" were featured on a one-hour program on HLN Network two nights ago...

Another excellent book on this topic is "The Girl on the 6th Floor". She has anti-NMDA receptor encephalitis which if hadn't been discovered in time, I don't think she would have survived. It is told from the perspective of her father and is very easy to read.