PANS + Lyme: Recovery and 8 Years of Misdiagnoses

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The Truth About My PANS Recovery

PANS can mean losing your very self… And then trying to get it back in recovery.

The other day, while filling out forms for an appointment, I froze, as I came upon the medical history section. How could I even begin to explain it all? Moreover, how could I fit everything on two little lines?

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In Response to Your Lyme Questions…

Ever since I announced my Lyme diagnosis, I’ve been inundated with questions from readers. While I’m not qualified to give anyone medical advice, I’ll gladly share my own personal experiences.  Given the number of messages I’ve received, I figured I should answer the most common questions in a post for all of you, so here you go: (more…)

How PANS Really Feels

PANS is an explosion inside my brain

PANS is an explosion inside my brain

“Mom, I want to die!” I burst into the living room screaming, a look of sheer terror in my eyes.

“Please… Help me!” I plead as I crumple into a heap on the sofa, wailing and yelling at the top of my lungs.

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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? (more…)

Goodbye, Anorexia?

Did I really eat a restaurant without having a panic attack?

Did I really eat a restaurant without having a panic attack?

This week, I reached a turning point in recovering from my eating disorder.

Up until now, although I’ve known how destructive my restricting has been to my body and though part of me wanted to stop, anorexia had so much control over me that I wasn’t completely willing to give it up. I said a few weeks ago that I was going to start treatment for it, but honestly, I was so depressed the day of the appointment that I couldn’t get out of bed and just cancelled it.

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Why I Won’t Eat

You know it's a problem when you feel guilty about eating an apple.

You know it’s a problem when you feel guilty about eating an apple.

With this latest flare, I’ve been struggling with an eating disorder again.  Restricted food intake is one of the two major diagnostic criteria for PANS, so my new obsession is nothing unusual.  In fact, this is the third time in my life that I’ve faced an eating disorder: the first was when I was nine or ten and the second was in 2014, at nineteen.

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Why Antibiotics Are Necessary for PANS

Sometimes, you have to try a few antibiotics for PANS before you find the right one.

Sometimes, you have to try a few antibiotics for PANS before you find the right one.

Since being diagnosed with PANS, I’ve been on antibiotics for twenty months straight, save for one two-week break. I’ll continue until six months after my last symptom, or at the very least, through my senior year of college.

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Why PANDAS Awareness Matters

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As I made my way through the halls to my neurologist’s office last May, I stopped in my tracks as I saw a face I recognized. She was receiving IVIG and roaming the halls hooked up to an IV bag pole, accompanied by her mother and a nurse. She was exhausted. There was no light in her eyes. She had a sense of burden and deep sadness about her that penetrated to the depths of her soul.

Once you’ve seen the face of a child with PANDAS, you can never forget it.

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What I Wish I Knew Before IVIG

There are some things doctors don't tell you about recovery...

There are some things doctors don’t tell you about recovery…

Last week, I celebrated the one-year mark since my first IVIG. It’s hard to believe it’s already been a year, yet my recovery has seemed to go so much slower than I thought it would.

There are many things that no one ever told me before my first IVIG. I was warned about the fatigue and nausea and headaches afterward and the post-IVIG flare that would come in a few weeks. I was even warned it could take a year before all my symptoms went away, but I was never told what that year might be like.

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Did I Lose My Mind to a… Sink?

Could a dirty sink trigger an autoimmune attack in my brain?

Could a dirty sink trigger an autoimmune attack in my brain?

Serratia marcescens… What in the world is that? An Italian dish? An exotic island town? Neither. It’s the name of a bacteria that you’ve probably never heard of—a bacteria that had taken up residence in my tonsils.

Serratia can be found anywhere, but it thrives in hospitals and in damp spaces like bathrooms. If you see a pink or orangish ring around a drain (such as mine, pictured above), it might be Serratia. Most people never have trouble living near the organism, but for some, it can cause serious problems. It can attack the heart. It can cause urinary tract infections. It can live in the gut. It can even cause bacterial meningitis. For me, having it in my tonsils was likely an ongoing trigger making my immune system attack my brain.

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Why Bedtime Can Be Terrifying

How can you sleep when the PANDAS bear follows you to bed?

How can you sleep when the PANDAS bear follows you to bed?

Tap, tap, tap.

It’s 2 AM, and someone is at my bedroom door. I bolt awake and hold still so they don’t know I’m in the room. I slowly reach for my phone and think about texting my parents to come help me.

But I’m all alone. No one is at the door.

I’m hallucinating again.

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Tonsillectomy and… Hope?

So Many Popsicles

My breakfast, lunch, and dinner!

When I first found out that I needed a tonsillectomy, I made three appointments with three different doctors at two hospitals. While this may sound excessive, based on past experiences, I knew the first doctor or two might refuse to do the surgery as soon as I mentioned PANDAS, especially since my tonsils looked healthy on the outside.

Indeed, when my records were sent to the first doctor, my appointment was cancelled within two hours and my case passed to a different doctor in the practice.

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What’s It Like to Survive a Flare?

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This week, I finally hit the post-IVIG flare that we were all dreading.  Thanks to a six-day burst of high-dose Prednisone, I’ve come out of it now, but I hope I don’t have to go through that ever again.  Unfortunately, I probably will.

Until my most recent IVIG, my flares were getting worse and worse.  One night a few weeks ago, I found myself spacing out at the kitchen table for about two hours, unable to make myself get up, because I had too many OCD compulsions. When I realized I’d been doing nothing for two hours and thought about how hard it would be to do anything with the burden of OCD, I just lost it—I spent twenty minutes walking around my apartment screaming and hitting the walls.

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Why Kids with PANDAS Are Brave

Recently, I had the chance to meet with a family who had two kids with PANS. We had some great conversations, and I’ll probably write a whole other post about our meeting another time. But there was one exchange between me and the seven-year-old that I can’t stop thinking about:

Me: “You’re very brave.”
Little PANDA: “Why?”

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Getting Over the Trauma of OCD

I usually say I’m mostly free from my OCD. Indeed, I no longer have to cancel out every intrusive thought that enters my mind, and I don’t have to double-check everything I say or write for a blasphemous double-meaning. Without hesitation, I can read passages of Scripture that once sent me into a full-blown panic attack. I’ve truly come a long way, but lately, I’ve been realizing that my fight isn’t over.

What I’ve been through as a result of Scrupulosity OCD was extremely traumatic. Do you know what it was like, as a devout Christian, to believe that you would be forever separated from the God you loved with your whole heart? To me, this was the worst thing that could have happened, and as far as I knew, it had happened.

The pain was real, even though the reality was totally different. The truth is, I just had a disease that manifested itself as extreme OCD that happened to take the form of religious obsessions and compulsions. No matter the content, all OCD is essentially the same. It wasn’t a “spiritual” issue any more than it was when I caught mono last year (and subsequently descended into the worst flare of my life). (more…)

What I Wish I’d Told My Parents

This time of the year is always difficult for me. Seven years ago at this time, I had the worst PANDAS flare of my life and descended into a terrifying world of OCD, odd behavior, insomnia, and depression. For a time, my symptoms completely tore apart my family.

I’ll never forget when I first made my parents cry. I was twelve years old, and we didn’t even know I had OCD, let alone PANS.  Had we known, things never would have gotten so bad.  My parents were almost as terrified as I was at the change they had seen in me.

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I Had OCD for 6 Years… And Didn’t Know

This week has been OCD Awareness week. Up to this point, I haven’t discussed my OCD very much, but I think it’s time to change that. An overnight onset of OCD is the hallmark symptom of PANDAS/PANS—which I had almost eight years ago.

For six years, I concealed from my parents and psychologists the torturous obsessions that ran through my mind because I was so afraid of and ashamed of them. (more…)

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