I spoke on the phone earlier this week with Super Amy to learn about the infections (namely, lyme disease) that appear to be the underlying cause of my PANDAS symptoms. Yesterday, Dr. Rookie sent me the official email stating that my lumbar puncture (LP) results were completely normal without any indications of autoimmune encephalitis in my cerebral spinal fluid. PANDAS is fits under the broader category of diseases called “autoimmune encephalitis.” So what’s up? The Cunningham Panel provides clearly points to PANDAS, while the LP says “no.”
In talking to Super Amy about the lack of evidence of PANDAS in my cerebral spinal fluid, she concurred my LP results were typical. There could be many reasons for this: first of all, the tests are not designed to look for autoimmune antibodies associated with PANDAS. Moreover, the exact autoimmune antibodies involved in any form of autoimmune encephalitis have not been fully discovered. The more pronounced types of autoimmune encephalitis — the kinds that put a person in a coma or creates violent, psychotic conditions — have garnered much more attention (quite understandably) in the broader medical community.
Brain on Fire: My Month of Madness by Susannah Cahalan is the harrowing tale of a woman’s journey with the life-threatening type of autoimmune encephalitis. Brain on Fire is an important work on so many levels.
For me, Susannah Cahalan’s book helped me understand that, at least in my family, PANDAS is not the extreme version of a “brain on fire.” However it is “the brain on simmer.” PANDAS is characterized by “flares,” the sudden onset–or return –of symptoms that affect the quality of life in many ways. A flare can feel like very “high heat” so to speak, but it will not usually lead someone to be hospitalized. Nevertheless, while the disease progression of PANDAS is not usually life-threatening, the syndrome is profoundly devastating and life-altering. PANDAS upends the idea of a normal, productive and happy life.
The familiar thread between “brain on fire” and “brain on simmer” presentations of autoimmune encephalitis is that both conditions are vastly misdiagnosed. Many people on psychotropic medications (for depression, anxiety, OCD, schizophrenia and other psychosis-oriented diseases) may, in fact, have autoimmune conditions where infections (and in some cases, tumors) have created inflammation in the brain– to devastating effect.
Categories: The story continues