These 3 Myths about PANS Are Ruining Lives: A Response to Misguided Medicine

Brain MRI.jpg

In 2012, when I developed an extreme case of Obsessive-Compulsive Disorder overnight, all I wanted was to get better—not to spend the next six years fighting to get treatment for a “controversial” disease.  However, when conventional therapies failed, and I rapidly declined after Strep and mono two years later, only steroids were able to help my severe psychiatric symptoms.  It was then that I realized the truth wasn’t always easy to accept: Continue reading “These 3 Myths about PANS Are Ruining Lives: A Response to Misguided Medicine”

11 Lyme Facts I Wish I’d Known Sooner…

When I was a kid, I never quite fit in at school, but the outdoors were my refuge—every day, I came home and found peace and quiet in our woods.  Little did I know, nature was about to stab me in the back worse than anything the other kids might’ve said.

Continue reading “11 Lyme Facts I Wish I’d Known Sooner…”

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.

Continue reading “Why PANS/PANDAS Awareness Matters: An Open Letter to Legislators”

I Graduated College with PANS, Lyme, and…. Highest Honors!

This weekend, I’ve defied all odds; I’ve done what never should’ve been possible…

I graduated from college, Summa Cum Laude… While in a long-standing battle with PANS and Lyme Disease!

When I was first diagnosed, it felt like my life was a tragedy, and PANS was the ending.  I was sure that it had completely ruined me, and pursuing my dreams seemed inconceivable…

Continue reading “I Graduated College with PANS, Lyme, and…. Highest Honors!”

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.

Continue reading “Why I Almost Quit Lyme Treatment”

Lyme Disease: A Still, Silent Battle

2 antibiotics, 3 medications, and 6 supplements: my weapons of choice against Lyme disease
2 antibiotics, 3 other meds, and 8 supplements: my weapons of choice against Lyme

“It’s Lyme disease.”

They were three words that shattered all of my expectations for recovery from PANS… Three words that I still struggle to accept… Three words that are going to change my life…

Continue reading “Lyme Disease: A Still, Silent Battle”

IVIG #3: Third Time’s a Charm

Could IVIG #3 be the end of PANS for me?
Could IVIG #3 be the end of PANS for me?

Today, just two weeks after my third IVIG, I’m happy to say I’ve made tremendous progress. I’m no longer afraid of food and calories, so I’ve probably gained back about half of the weight I lost. I’ve gotten strong enough to run (slowly). My POTS symptoms are basically gone, and my parents have told me that there’s life in my eyes again. Oh, and I’ve even finished all of the summer coursework for the classes I had to take incompletes in—including a twelve-page research paper!

So am I better now? Is life perfectly peachy now that I’ve had IVIG? Continue reading “IVIG #3: Third Time’s a Charm”

POTS & PANS: A Recipe for Disaster?

My body is cooking up trouble with POTS and PANS
My body is cooking up trouble with POTS and PANS

“You’re going to hate me when I tell you this,” my cardiologist said this week.

I braced myself to be told my heart was damaged from Rheumatic Fever—or to be told my symptoms were all in my head, as so many doctors had said over the years…

Continue reading “POTS & PANS: A Recipe for Disaster?”