Why Autoimmune Encephalitis Doctors Need to Stop Ignoring PANS

Today is World Encephalitis Day, and I want to take a moment to shed some light on a certain controversy within the PANS and encephalitis communities:

Is PANS a form of autoimmune encephalitis, or is it something else?

Back in 2014, in a matter of weeks, I went from being a typical college student earning straight-A’s to a psychiatric cripple who was afraid to eat and didn’t want to exist anymore.  I also lost the ability to walk, was overcome with constant involuntary movements, and couldn’t stay awake for more than a few minutes at a time.

How could a person develop sudden-onset Tourette’s, narcolepsy, bipolar symptoms, and severe coordination problems simultaneously in isolation from each other? 

So after weeks of bouncing from doctor to doctor, I was diagnosed with autoimmune encephalitis (AE).  My immune system had mistakenly attacked part of my brain instead of the Strep and mono that I’d recently caught.  The rogue antibodies went after my dopamine receptors and lead to symptoms that mimicked mental illness.

Since my diagnosis, I’ve endured eighteen rounds of IVIG and month after month of steroids which have put my symptoms into remission far more effectively than any medication intended to treat the seven individual diagnoses I’d received: Depression, Anxiety, Obsessive-Compulsive Disorder, Anorexia, Tourette’s Syndrome, Narcolepsy, and Periodic Limb Movement Disorder.

The immune-based treatments I underwent took me from being a shell of my former self when my disease was at its worst, to a functional full-time grad student holding down an assistantship today.

But there’s a problem: the AE doctors don’t believe me—and they’ve all been doctors practicing at reputable academic hospitalsThey don’t think my condition is real because it doesn’t show up on the combination of tests used to diagnose other known forms of AE.  They’d rather label me with Bipolar Disorder or Psychotic Depression and drug me for the rest of my life with medications that have never touched my symptoms.

The trouble is that mine is a particular kind of AE called PANS, which many mainstream autoimmune encephalitis doctors do not consider a form of AE.  For too many specialists (though thankfully not all), it seems that if it doesn’t fit into their neat diagnostic boxes and pre-conceived notions, then it’s not worth their time to figure out.  I’d like to think that any informed doctor would at least know by now that PANS is a real condition, whether or not it’s AE, but sadly this hasn’t always been the case.

So on top of debilitating symptoms, I’ve not only had to fight to get better, but I’ve had to fight to find doctors who acknowledge that my disease even exists.

And the sad thing is that this is true for nearly everyone who has PANS.  The dogma is that if you don’t have a kind of autoimmune encephalitis that medicine knows how to test for, then your symptoms must be behavioral or psychological.

A while back, I got a full autoimmune encephalitis workup just to be sure I hadn’t had a different form of AE for all that time. I hoped it could reveal why my case has been so persistent.  I endured an EEG, epilepsy-protocol MRI, extensive blood work, and a spinal tap in the hopes of gaining insight into the symptoms that have plagued me for years.  But guess what happened?

Nothing in my results showed any evidence of brain inflammation. 

According to the “AE expert” I saw, I don’t have autoimmune encephalitis, and I should never have had IVIG or steroids. This person also informed me that I couldn’t have PANS because I’m not “pediatric”—an assertion with no basis in the current understanding of PANS.

Truth be told, it wasn’t until now that I’ve been able to recover from the gas-lighting I endured at the hands of this doctor.  I was so confused and angry that I began to wonder if I really am just another psychiatric patient—what if five years of successful treatments with steroids and IVIG were nothing more than placebo effect?  What if this doctor was right?

But on this World Encephalitis Day, I’m going to throw a grenade into the rigidity and bias that plague too many autoimmune encephalitis doctors, impede scientific progress, and prevent everyone like me from receiving their help:

You don’t know everything about the brain and the immune system.  You don’t have a monopoly on inflammation causing mental illness.  You can’t test for every medical condition that can affect the mind.

The reality is that mental illness is a symptom of a physical illness that science doesn’t yet know how to quantify.  The mind doesn’t exist outside the brain, and the brain doesn’t function without the body.  Even emotional trauma has been shown to alter brain structures, so an argument could be made that all mental illness is ultimately physical in some way.

Many doctors readily believe in the mind-body connection, in which mental illness can lead to physical symptoms, but have their heads in the sand when it comes to the body-mind connection.  It’s preposterous to espouse autoimmune encephalitis as the only condition where the immune system affects the brain and results in psychiatric symptoms.

And why do doctors accept that elderly people can lose their minds when they get an infection, but when a kid gets Strep and suddenly flies off the rails it’s just a coincidence?  Why could infection only trigger neuropsychiatric symptoms in older adults?  Why aren’t younger people’s sudden mental illnesses suspected as having an infectious cause like they would be in your grandmother?

Therefore, labeling people with PANS who don’t show signs of “classic” autoimmune encephalitis as mentally ill is nothing more than a biased cop-out.

The truth that no one is willing to accept is that there is more medical evidence that PANS/PANDAS exists than any mental illness.  Have you ever heard of a patient getting a blood test to figure out whether or not they have depression?  Imagine the (rightful) outrage if someone with severe depression was told their condition wasn’t real just because their blood work was normal!

Every psychiatric diagnosis is made only through observation and/or a clinical interview, yet mental illness is widely accepted as real and valid, as it absolutely should be.  And yet PANS, another clinical diagnosis, is not.

If the AE doctors are going to dismiss PANS on the grounds of it not showing up on medical tests, then by that logic they ought to do the same for all mental illnesses.  But somehow it’s common knowledge that mental illness is as real and devastating as any other medical condition. 

Why isn’t PANS just as accepted?

When there are thousands of people like me whose “psychiatric” symptoms are proven to correlate with infections and a weak immune system, as shown in blood tests—and who improve with antibiotics, steroids, and IVIG, time and time again—it is bad science to dismiss the physical evidence in exchange for psychiatric diagnoses with no known biomarkers. 

Moreover, for those of us with PANS, psychiatric treatments often make our condition worse or simply don’t work.  I dare you to find a single person who would rather endure invasive procedures like IVIG instead of the psychotherapy that tends to help many psychiatric illnesses.  No one wants to travel hundreds of miles to PANS experts and pay out of pocket for treatment when, in most cases, there are local mental health services covered by insurance.

And in reality, the majority of people with PANS do try therapy and/or psychotropic medications, and though they can be good tools for some, they don’t do enough to bring us back to health. We have a physical, immune-related illness, so we have no choice but to go through the back doors of the medical system to treat the root cause.

So is PANS a form of AE, or is it not?

It may very well be that PANS is sometimes a kind of autoimmune encephalitis that doesn’t show up on the standard AE tests currently used—after all, most AE experts readily admit there are plenty of autoimmune antibodies we can’t yet identify.  Or maybe in other cases PANS is something very similar but better classified as separate from AE.  Either way, I suspect “PANS” is a term that encompasses what we’ll someday discover are multiple related diseases—and that AE will turn out to be far more common than anyone thought. 

But one thing is for sure: just because something doesn’t look like the most widely accepted, present-day definition of AE doesn’t mean it’s psychological! 

In fact, PANDAS Physician’s Network says that other kinds of AE must be ruled out to diagnose PANS/PANDAS, so normal AE tests can never exclude it.

This World Encephalitis Day, I hope that both people with accepted forms of AE and people with PANS/PANDAS will get the help they need.  I want everyone to know how devastating AE and PANS can both be—and to realize that some cases of psychiatric illness have a treatable, immune-related cause, whether it’s PANS or AE or something else.

If you or someone you know has a mental health diagnosis and worsened symptoms whenever they have an infection, or if they developed mental illness out of nowhere, it just might be PANS or some other kind of encephalitis.  Please read more about these conditions here:

Science is only in its infancy in understanding how the immune system can affect the brain and cause psychiatric symptoms in PANS, AE, and other medical illnesses.  We need more research on encephalitis of all kinds, and for the AE and PANS communities to come together to work towards finding a cure for all.

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