What It’s Like to Get an Incurable Diagnosis at 24: How I’m Coping with ME/CFS

“There’s no cure.  No one knows if you’ll ever get better.”

The realities of my situation swirled in my mind as I tried to make sense out of what was happening.  None of it was news, but somehow the word hit me harder than ever before:

Encephalomyelitis

“With the encephalomyelitis…” my doctor began at a recent check-up, but I have no idea what came after, because that word was all I could hear.

Continue reading “What It’s Like to Get an Incurable Diagnosis at 24: How I’m Coping with ME/CFS”

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? 

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How I Finally Made Peace with My Lyme Diagnosis

“Close your eyes,” the Lyme specialist said. “And hold your arms out straight.”

My body began to jerk while I stood in front of the exam table with my arms extended. As I strained to stop the involuntary movements, I could sense my parents’ dismay even through my eyelids.

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Why PANS/PANDAS Awareness Matters: An Open Letter to Legislators

This week, legislators in Wisconsin have the opportunity to save hundreds of lives and millions of taxpayer dollars: a bill to establish an advisory educational council on PANS/PANDAS is under review.  New York is also considering similar policies, and several others including Virginia have successfully implemented them.

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I Wasn’t “Sick Enough” to Have Lyme. Then 2017 Exposed a Shocking Truth…

I’ll never forget the day I first set foot in a Lyme clinic, as I watched other patients with pale, exhausted faces roll into the waiting room in wheelchairs. I’d just finished another semester of college and a ten-mile run that weekend.  I remember thinking, I can’t possibly be sick enough to have Lyme Disease.  What am I doing here?

Continue reading “I Wasn’t “Sick Enough” to Have Lyme. Then 2017 Exposed a Shocking Truth…”

Why PANS Awareness Saves Lives

For the last eleven years of my life, I’ve battled a debilitating yet misunderstood autoimmune disease called PANS. It’s a disorder where an infection or an environmental trigger confuses your immune system into attacking your brain. This leads to all sorts of problems like OCD, anxiety, depression, tics, involuntary movements, cognitive problems, and many more horrible things.  It affects at least 1 in 200 people, but you’ve probably never heard of it.  Many doctors haven’t, either.

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My Narcolepsy Diagnosis Almost Ruined My Life

Three years ago, I wanted nothing more than to be awake.

After a sore throat on my first day of college, I’d become increasingly incapacitated with sleepiness that nothing could relieve. I spent the majority of freshman year asleep, existing in a dream-like state where I never seemed to attain full consciousness. I hoped for a solution to my problem that worked as quickly as it had begun, but nothing prepared me for what my sleep neurologist said instead, on that fateful May afternoon: Continue reading “My Narcolepsy Diagnosis Almost Ruined My Life”

Why I Almost Quit Lyme Treatment

 

On Thursday morning, I woke up and immediately knew something was very wrong. My whole body ached. I had an awful headache. I was dizzy. I was too nauseous to even think about food or water. It was that familiar set of symptoms that meant one thing: I was in for a terrible Lyme herx.

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