Thoughts on Brain On Fire and Treating Autoimmune Disease

The release of the recent book, Brain On Fire, and subsequent interviews with its author, Susannah Cahalan, drove home for me the importance knowing what you are dealing with when it comes to illness, and especially autoimmune disease.

My heart goes out to Susannah.  She is afficted with a disease causing brain inflammation which blasted into her life in her early 20s, causing madness.  She finally found a doctor who was able to figure out that she was suffering from brain inflammation.  He put her on immunosupressants and IVIG, and this calmed her system down enough to live a normal life.

I can only imagine Susannah's and her family's relief at getting her symptoms under control.   Her life was a living hideously expensive nightmare.  But I was left with terrible sadness over her situation.  Something is causing that inflammation.  Supressing her body's response to it may be helping her in the short run, but what is that going to do in the long run? 

I can relate to Susannah's situation to some extent.  I went through menopause at 36, and chose not to look into why at the time.  I had many early pregnancy losses when I was first married and trying to conceive a child.  I finally found a doctor who understood the immune system's impact on pregnancy well enough to put me on IVIG and an immune system supressing drug, Remicade.  It worked, and I had my first and only child.  Even then I didn't take the time to find a doctor who could help me understand the cause of these health problems.

It wasn't until we got mold in our house and I found a doctor, by searching the Internet, who specializes in finding and resolving causes of autoimmune disease that I discovered likely causes to my health problems.  Treating them has taken a lot of time and some money, but I am now seeing my own bloodwork come back with much lower autoimmune markers--not because that activity is being supressed, but because my body is healing from what has ailed it for so long. 

How do you quantify the value of a good doctor willing to find the cause of your health problems?  What benefit will come to you if you resolve rather than supress your inconvenient illnesses?  If I had acted sooner, I might have been able to have more children.  I might have avoided the chronic fatigue that showed up in my 40s.  I might have saved thousands of dollars on alternative and mainstream medical "solutions" that didn't ultimately work out.  I might have had a different focus to my life.  I'll never know. But I will forever be grateful to the doctor who helped me understand what was going on in my body and what needed to be fixed.  Because I know my future will be brighter as a result.


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