PANDAS & Lyme: My Recovery and 8 Years of Misdiagnoses

Posts tagged ‘Diagnosis’

My Narcolepsy Diagnosis Almost Killed Me

What happens when you’re diagnosed with narcolepsy, and every treatment fails?

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:

“You have narcolepsy.”

My whole world shattered.

Narcolepsy is a serious autoimmune disorder in which the body destroys the brain chemical hypocretin—the neuropeptide responsible for regulating wakefulness. There is no cure.

Normally, there’s a clear line between the sleep and wakefulness cycles, but in narcolepsy, it’s as if they’re blurred together.  People can experience sleep paralysis with strong emotions while awake, known as cataplexy, and carry out routine activities while asleep (automatic behaviors). They may see terrifying hallucinations while waking up or falling asleep, and they might wake up and not be able to move. Worst of all, you can’t stay awake during the day (though you might not be able to sleep at night). Untreated, it’s utterly debilitating.

I would have narcolepsy for the rest of my life, my doctor explained, but with medication, it shouldn’t stop me from living.

On the surface, I fit the bill for narcolepsy perfectly. I had daytime sleepiness so severe that I could fall asleep standing up, in the middle of a conversation, or after sitting down for five minutes, regardless of how much I slept at night. I had the cataplexy; whenever I laughed hard, my knees buckled in a paralysis attack. I had the hallucinations and the automatic behavior. And I had Periodic Limb Movement Disorder—my legs would move hundreds of times while I slept, resulting in awakening over two-hundred times during my overnight sleep study; people with narcolepsy often have PLMD.

But there was one problem with the diagnosis: my sleep studies didn’t look like narcolepsy.  In my daytime sleep study called the Multiple Sleep Latency Test, where I took five twenty-minute naps over the course of the day, I never once entered REM sleep—and entering REM in at least two naps characterizes a narcolepsy diagnosis. So I was a “narcoleptic…” Who didn’t really have narcolepsy.

My neurologist wasn’t confident in my diagnosis, so he sent me away from the appointment with medicines to treat the PLMD, just in case it was the sole cause for my extreme sleepiness. If the medicines worked, I didn’t have narcolepsy. But the medications I tried—Neurontin, Neupro, and Requip—didn’t make me any less sleepy, and instead, I deteriorated further. Requip even landed me in the ER, with violent involuntary movements, and I lost the ability to walk.

So apparently I did have narcolepsy—and now a movement disorder and increasingly severe psychiatric problems that five other neurologists couldn’t explain or relieve.

After the Requip nightmare, I started a $5000 narcolepsy medication called Xyrem, but it too failed miserably at controlling my symptoms; before long, I reached the brink of insanity as I fell into delirium, became terrified of vomiting, and stopped eating.

“We’re so sorry, but we don’t know how to help you.”

My doctors were running out of treatment options… Or so they thought.

In a last-ditch effort to save me, my parents begged for a five-day steroid burst. If it worked, then perhaps I had that “controversial” autoimmune disorder called PANDAS/PANS.

And then I woke up.

After three days of Prednisone, I was in my right mind and awake without stimulants for the first time in months. Even after the burst ended, my “narcolepsy” was still gone. The transformation was so shocking and dramatic that my formerly PANS-skeptic doctors became PANS advocates.

A couple weeks later, a specialist confirmed my PANS diagnosis, and I received IVIG to more permanently stop my symptoms. A case of mono and a Strep infection had tricked my immune system into attacking my brain, which manifested as sleep issues and psychiatric/cognitive problems.  Although the sleepiness returned to a more mild extent two months post-IVIG, it never reached the severity of before, and after a second IVIG, it disappeared for good.

Today, three years after my narcolepsy diagnosis, though I’m still fighting PANS to a far milder extent (and now Lyme), I live a fulfilling life.  So I can’t help but think, what if I’d never found out I had PANS? If PANS hadn’t killed me through starvation or suicide, then it would’ve been a living death sentence to survive with treatment-resistant “narcolepsy” and PANS’ other torturous, disabling symptoms.

10% of those diagnosed with narcolepsy have normal levels of the brain chemical hypocretin, meaning the cause of their symptoms isn’t understood. And doctors still don’t know the cause of narcolepsy’s cousin, idiopathic hypersomnia. How many other people are out there diagnosed with hypersomnia, narcolepsy, or PLMD who, like me, actually have PANDAS/PANS?

Until more patients and doctors are aware of PANS, we’ll never know. Although I’m no longer the “Dreaming” Panda in the same sense as when I came up with the blog name in 2014, now I dream of the day when no one has to endure what I did to awaken from their nightmare. I hope people will share my story, and their stories, with the world, to turn this dream into reality.

Why I Almost Quit Lyme Treatment

I pretty much take an entire pharmacy every day

 

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.

The last two weeks of symptoms flashed in my mind… The severe anxiety that gave me a panic attack over leaving the house. The lack of concentration and mental energy that meant falling behind in school. The incessant partial seizures that made me nervous every time I stood up to walk. I hadn’t even been in such bad shape when I started being treated for Lyme in December.

What are these doctors doing to me? Why am I putting up with this? I realized that morning that my treatments were only making me sicker.

As I eventually got to the kitchen, I sat there and stared down my antibiotics—the perpetrators of these all-too-frequent Herxheimer reactions that seem to be slowly ruining my life.

I can’t do this anymore…

I stopped my Lyme protocol for several days, because the thought of getting any worse than I already was seemed unbearable. Last semester, my quality of life, even if I still had PANS flares, had been much better. I’ve missed so many days of class this semester, thanks to herxes that leave me too weak and sick to get out of bed. I thought if I took a break from my protocol, maybe life could go back to how it was before.

But unfortunately, my strong reactions to the treatments show that they’re killing off a lot of bacteria—in other words, my misery is proof that I need to keep going.  And last summer, Lyme disease attacked my heart and nervous system, and there are still spirochetes in my brain—who knows what they could do to me over time?

I can’t quit. Whether I like it or not, this disease is trying to take my life, and if I want to live, I have to fight back.

After a couple of days of lying around the house and feeling terrible from the herx, plus a lot of kicking and screaming, I finally accepted this battle I’ve been given. I shed more than a few tears, finally realizing that I may have another year or more of Lyme treatment before I’m cured. I felt anger and rage that I’m spending my twenties in a health crisis—after already having PANS for a decade. But I’m channeling that anger into a will to fight to get better.

I almost quit treatment because I was tired of feeling worse. I kept going because I wanted to live.

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…

The other week, I was officially diagnosed with Lyme and some co-infections (Babesia and Relapsing Fever, in my case) at a Lyme treatment center. Apparently, it’s Lyme and the co-infections that are continuing to provoke my immune system and cause me to flare and not quite get all the way better.

While it’s great to have more answers, I found out other things I didn’t want to know…

In addition to my usual brain inflammation, the Lyme doctor discovered that my nerves are inflamed, and my spleen is enlarged from working so hard to fight off the infections. Also, I’ve almost completely lost my patellar reflex—when they took the rubber hammer to my knees, nothing moved—potentially a sign of a serious problem.  The “shin splints” that I can’t seem to heal may be bone pain from the infections.  Most frightening of all, my knee-buckling attacks (which I’ve had for two years) may be atonic seizures.

After the trip to the Lyme specialist, I was reeling for days, which is why I haven’t been able to post until now. Physically, I haven’t felt like a sick person at all—I have none of the aches and pains that so many people with Lyme experience, so realizing I was indeed quite physically ill came as a shock to me.

Moreover, I’d been hoping to be done with PANS soon, but I’m now told I’ll most likely need Lyme treatment for at least another year. And if it really takes that long to clear the infections, I don’t think I can expect to be free from PANS until they’re gone, either, can I?

So what can I do? I’m beyond tired of fighting for my life, because I’ve had PANS for ten years (untreated for eight of them), and I’ve especially been fighting hard over the last few months because of this Lyme-triggered relapse. Plus, trying to conquer an eating disorder brought on by all of this has taken its toll on me. But now, they’ve told me that I must also fight against Lyme somehow? How many battles can one person fight at once?

But one evening this week, when I was feeling particularly depressed about my situation, I came across a Bible verse that really spoke to my battle fatigue:

“The Lord will fight for you; you need only to be still” (Exodus 14:14).

In reality, for now, “Fighting Lyme,” is nothing more than adding another antibiotic and a few more supplements and continuing to do my best to live a healthy life. To fight Lyme, I only have to be still and wait for these treatments to work. Fighting Lyme changes absolutely nothing about my day-to-day life—except that eventually, it will get better and easier when I beat it into submission.

Although it may seem like Lyme is a whole other terrifying monster to try to subdue, when I was done with my shock and denial, I realized that fighting Lyme isn’t actually much different from fighting PANS. “Being still” and waiting for treatments to work is exactly what I’ve been doing for PANS for the last two years, but now, I’ll be eliminating the infection that triggered this whole relapse in the first place. So really, the diagnosis is a good thing, because I have a more concrete plan for how to recover from both PANS and Lyme.

And so, readers, it looks like you’re going to get at least another year of posts out of me, thanks to this long Lyme treatment process. Two weeks in, I’ve already made leaps and bounds—I’m concentrating better and no longer have suicidal thoughts—so with any luck, 2017 will be the year that you and I all beat PANS and Lyme once and for all.

Thanks for all of your support, particularly through my 2016 relapse. Here’s to a better 2017!

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…

“Your heart is fine—in fact, we haven’t seen one this perfect in years.”

Relief washed over me for a moment—until I remembered how my pulse had shot up when I stood for a test a few minutes earlier. The look on my doctor’s face told me I wasn’t imagining my symptoms.  What I’d feared most was true:

“You have… Dysautonomia.”

Dysautonomia is a fancy word for when a person’s autonomic nervous system (ANS) malfunctions. It can be caused by infection, autoimmune disease, or environmental triggers. The kind I have is called POTS (Postural Orthostatic Tachycardia Syndrome).

My doctor explained that whatever illness I had in April triggered a malfunction in the part of my ANS that regulates blood pressure and heart rate. So now, whenever I stand up, my heart starts beating very fast because not enough blood is returning to it; blood pools in my legs instead, so I get lightheaded and dizzy. Not surprisingly, this leaves me exhausted all the time.

“You can recover from this,” he explained. “But it’s going to take a lot of courage and time—possibly two or three years.”

I left the appointment that day with my head spinning—not from a lack of blood flow, but from the realization that my world had, once again, been turned upside down. For weeks, I’d hoped to find a simple cause to my fatigue with a simple fix. Instead, I got yet another diagnosis that doctors are only beginning to understand—another condition like PANS that could take a long time to defeat.

Although there are medications such as beta-blockers that can help POTS, for now, my treatment plan is to take in more salt (about 5000 mg of sodium each day), drink more water (2-3 liters), and slowly ease my way back into exercise. I also need to be sure I sleep enough and eat well (easier said than done while fighting an eating disorder).

To be honest, I’m still a bit in shock over this latest diagnosis and what it means for the months to follow. But at the same time, I’m really not surprised that my body once again had a strange reaction to a virus—albeit in a new way.

Frankly, I see POTS and PANS as related, because my POTS came on at the same time that my PANS symptoms started getting bad again. Indeed, my PANS doctor told me many of her patients have both POTS and PANS—a true recipe for misery and disaster.

Because of this, I wanted to make you all aware of POTS.  Symptoms include:

  • Rapid heart rate when standing or sitting up
  • Dizziness (especially when standing)
  • Lightheadedness
  • Fainting or almost fainting
  • Fatigue
  • Shortness of breath
  • Chest pain
  • Feeling heaviness in your legs
  • Headaches

For most people, proper treatment can lead to significant improvement, so it’s important to get a diagnosis. You can read more about POTS and other kinds of dysautonomia here: http://www.dysautonomiainternational.org/page.php?ID=30

I’m still trying to process what happened this week, but I refuse to accept POTS as a permanent part of my life. However, the cardiologist told me if I don’t fight POTS now, it will get worse, so I’m going to keep pushing forward one day at a time—I’m determined to find a recipe to overcome both POTS and PANS.

The Terrible 2’s?

Cake

Happy 2nd birthday to me!

This week, I celebrate my two-year blogiversary.

I started The Dreaming Panda when I was at my absolute worst—I couldn’t walk, I’d lost thirteen pounds, I could barely stay awake, and I was morbidly depressed. This means it’s been two years since that first trip to the ER when everything got so bad and precipitated a resolution to eight years of misdiagnoses.  So I’m now two years into my recovery journey.

For weeks, I’d been planning a post where I thank all of you for two years of support and tell you about how great life is now and how miraculous my recovery has been in those two years. I was going to talk about how I made all A’s and B’s last semester, which was the first time I’d been able to handle a full load of coursework since Freshman year. I was going to tell you about how I recently did my first solo road trip, while two years ago, I was unable to drive at all because of how sleepy and out-of-it I was. I was going to tell you that I’d been taking another twelve hours of classes this summer and enjoying it because it was finally possible to concentrate and think clearly. But then something happened….

I flared and started heading for a relapse.

Despite taking the antidepressant Wellbutrin, I am once again depressed and have been forced to take an “Incomplete” in two of my classes. I’ve lost all motivation and spend my days lying on the sofa now. And I’ve also lost at least eleven pounds, because my eating disorder is back. It looks like I’ve hit the terrible-two’s in my recovery journey.

Though this might all come as a shock when I’d recently been posting about how great everything is in terms of PANS symptoms, over the last few weeks, it’s become increasingly apparent that I’m physically unwell. I’ve gone from easily running seven-minute miles and half-marathons, to getting out of breath after waddling a quarter mile at a twelve-minute pace. Sometimes, I can barely climb the stairs. I have awful headaches at night, I’m often dizzy, and there are huge dark circles under my eyes despite eight or nine hours of sleep.

I have no idea what’s going on with me—we’re considering everything from Lyme and co-infections to POTS to anemia. All I know is that I’ll keep fighting until I get better again. My brain may make me feel panicked and terrified of everything right now, but I’m not afraid of what PANDAS is trying to do to me this time. I’ve beat it once, and I’m convinced I’ll do it again.

While this isn’t the celebratory two-year anniversary post I’d hoped to publish, I still wanted to thank all of you for your ongoing support. When I made the daring decision in 2014 to anonymously share my entire journey with the world, I never could’ve imagined all of the wonderful people I would meet as a result. I never imagined the love I would feel from strangers. I never imagined how much some of my writing would resonate with people, as was shown with the hundreds of shares my post for PANS Awareness Day received this year.

Your comments and emails have kept me going over the last couple of years, and for that, I’m forever grateful. Knowing that what I’m sharing through my writing has helped some of you has made me feel like my suffering might have a purpose.  Thank you for that.

Though this year feels like the terrible-two’s so far, here’s to a year that brings complete healing to me and to all of you!

Treatment Is a Kitchen Sink?

Treating PANS can mean trying the whole kitchen sink.

Treating PANS can mean trying the whole kitchen sink.

When I was first diagnosed with PANDAS in 2014, my doctor said the treatment plan was to give me “the whole kitchen sink.” In other words, I would receive the full range of therapies, many of them all at once. It was unscientific, since this made it hard to tell which treatments turned out to be the most effective, but for a girl who could hardly walk and had lost over 10% of her body weight, this approach was necessary.

Today, I can say with confidence that the kitchen sink worked for me, because I’m back in school and thriving, with only mild difficulties.

So many of you have asked me what exactly I did that got me better—the majority of the emails I receive from readers are questions about my treatments. Because of this, I’ve decided to do a series of posts on the various treatments I’ve used, what they were like, and how I responded (or not). I probably won’t do all the posts consecutively—if something else inspires me on a given week, I’ll interrupt the series.

You see, the problem with treating PANS is that the lack of diagnostic tests makes it impossible to know which treatment will provide the most relief. What worked for me won’t work for someone else. What worked for others didn’t always work for me.

Even worse, nearly all of the treatments available take weeks, if not months, to produce results, so by the time you know something didn’t work, you have to start all over again and hope the next thing you try will do the job. Meanwhile, you’re miserable and hardly yourself because of your plethora of debilitating symptoms. I can’t even begin to express how agonizing the process can be when you’re not making progress, and you’re wondering how much longer until your treatments help you get better—or if you’ll ever get better at all.

Moreover, because of the lack of awareness and the lack of doctors with PANDAS experience, there’s no one to hold your hand through the recovery journey. The PANDAS specialists are overrun with cases and can’t speak to you often enough, and you’re fortunate if you can find a local doctor to simply refill your antibiotics—let alone to provide treatment guidance.

The fact that dozens of parents ask advice from a twenty-year-old with no formal medical training who writes a blog from her dorm room—this tells you everything you need to know about how hungry people are for information, hope, and support when dealing with PANS. On the other hand, there are many things one can learn from a patient that can never be gleaned from cold facts presented in medical journals.

All of this is to say that I’m going to be doing this series to hopefully make the treatment journey less scary for those in the middle of it. I’m not here to suggest any particular methods for others, but I hope by going into more detail about what I did, people might better understand what to expect after having made their own decisions with their doctors.

When my doctor first told me about the “kitchen sink,” I never could’ve imagined how many kinds of treatments I would try before getting completely better.  Recovering from PANS is the hardest thing I’ve ever done, but all that matters is that something worked for me—or more likely, several things worked together.

So readers, I hope you’ll come gather round my kitchen sink in these next few posts, and we’ll talk about this treatment and recovery journey that we’re all on together.

The Day Recovery Began…

I never imagined what could result from an iPod and a Google search...

I never imagined what could result from an iPod and a Google search…

As I approach final exams this week, I’ve been thinking back to three years ago, when my life changed forever, on December 17th, 2012.

At the time, I was seventeen and in my senior year of high school. I was excelling academically, and people told me I’d have a promising career. I was popular with lots of friends. I felt such a sense of freedom in being an “adult” by learning to drive. I thought the possibilities for my future were endless.

But in an afternoon, my whole world collapsed.

One Saturday at the end of November, out of nowhere, I became convinced I’d committed an unforgivable sin. Suddenly, blasphemous intrusive thoughts constantly filled my mind, and I was consumed with trying to “cancel them out” with silent mental rituals. If I didn’t, I might go to Hell. Overnight, my OCD transformed from mild to an extreme case—though I was still undiagnosed. Little did I know, it was the beginning of a three-year PANS exacerbation.

After that day, my life went from being wonderful to being a living Hell.

Sometimes, I realized how irrational my obsessions were. I would know I was a Christian, and I found it unbelievable to think that a loving God would throw me into Hell over some upsetting thoughts. Other times, I spent every waking moment trying to stop the intrusive thoughts, in constant terror that I was damned and beyond hope.

Sadly, it wasn’t the first time I’d endured this torment. Six years earlier, my OCD had abruptly started in the same way, and since then, it had come and gone. From the time I was eleven, blasphemous intrusive thoughts happened throughout each day, but I eventually learned to pay them no attention. I never told anyone. But suddenly, in 2012, the thoughts took over my life again and couldn’t be ignored, and I felt like they would throw me off the face of the earth at any moment.

Everything came to a head the weekend before my final exams. I couldn’t study, because the thoughts were constant, as were my futile attempts to stop or cancel them. I couldn’t write anything without checking and rechecking to be sure something didn’t have a blasphemous double-meaning. I couldn’t say certain words at all (like “bad” or “evil”), because I feared they would cause another blasphemous thought. It felt like there was a knife lodged into my conscience, tearing down to the core of who I was, and with every thought, it only cut deeper.

On December 17th, after three weeks of mental and spiritual agony, I’d reached the end of my rope. I saw I had to do something besides keep trying to cancel the thoughts, because the torture was only worsening. I stepped back and began to wonder if maybe, just maybe, I had a mental disorder causing it all. Maybe I wasn’t eternally doomed. Maybe none of it was my fault. And then I remembered a Reader’s Digest article from that March which mentioned OCD involved repetitive, unwanted thoughts.

After a Google search and two minutes on the OCD Wikipedia page, I knew.

It’s impossible to describe the hodgepodge of emotions in that moment on December 17th… I was so relieved to discover that my misery had a name—and a hope of ending. I was comforted to realize I wasn’t alone. I was shocked to find out I’d had a serious mental disorder for all those years. I was terrified, because I knew without a doubt that I finally had to speak up and get help. But most of all, I was hopeful, because I knew life could get better.

I wish I could say that everything got easier after that day, but because my family couldn’t convince local doctors to treat me for PANS (which we began to suspect as the underlying cause), December 17th was only the beginning of my fight against various debilitating neurological symptoms that would soon come.

Three years later, it’s been an incredibly long road to get to the freedom I have now (and I’m still fighting in some ways).  I’ve endured months of Exposure-Response Prevention therapy, two IVIG’s, tonsillectomy, lots of antibiotics and other medicines, and drastic lifestyle changes, but PANS no longer runs my life—nor does OCD.

As December 17th comes and goes this week, I can’t help but be grateful for the day, because my discovery and my parent’s research on OCD that followed is what ultimately led to my PANS diagnosis—and eventual recovery.

But more so, December 17th now makes me question… What about all the other people who have OCD but are too scared and confused to get help? How many more cases of PANS will go undiagnosed for eight years because people conceal their OCD so well? My situation was not unique, so I believe more awareness for OCD and PANS among parents, psychologists, doctors, and even children, will bring December 17th faster for more people.

OCD Week: Unlocking The Box

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I couldn’t believe what I found in this box.

A few months ago during one of my trips home, I came across an old lock-box where I used to hide things as a child, but I couldn’t remember what I would’ve put in it. Tiny toys? Candy? Secret notes?

What I found there instead shocked me.

The box was filled to the brim, and on top was an unrecognizable brownish-green rectangle in a plastic bag. I pulled it out and discovered it was a seven-year-old piece of hardened bread. Beneath it were dozens of pieces of random trash.

IMG_3816-small

This was no ordinary treasure box…

Had I used this box as a trashcan? No, the bread was something that had to do with an OCD compulsion I had when my OCD was at its absolute worst in 2007. I’d hidden it in the box, where I knew no one would ever look, because I was embarrassed and afraid of anyone ever knowing about my rituals. The trash consisted of things that had no meaning or value that I’d felt like I needed to keep for no reason—a characteristic symptom of hoarding OCD.

Unlocking the box re-opened the darkest chapter of my life when I was consumed by Obsessive-Compulsive Disorder. As disturbing as this was, perhaps the worst part was realizing its poignant symbolism…

For six years, I kept my OCD and the suffering it caused locked up within me, despite the efforts of multiple therapists and psychologists. I thought if anyone knew about the thoughts I had, I would be labeled a crazy and terrible person. I never let anyone look inside the box, and I hid my OCD so well that even I could almost pretend it wasn’t there. But that box was in plain sight, sitting on my bedroom shelf for all those years. Had anyone had the key, it would’ve been so easy to look inside at my pain—and get me help.

I believe that the key is more awareness about different types of OCD and an open dialogue with children about mental health. If I’d known OCD could take the form of repetitive unwanted thoughts along with mental rituals to “cancel them out,” I would’ve been more inclined to open my internal OCD box sooner. If my psychologists and therapists had simply mentioned that repetitive, upsetting thoughts were characteristic of OCD—and that OCD was more than hand-washing and making everything even and tidy—that piece of moldy bread would not have still been in my box seven years later.

Ultimately, it was only when I read a description of OCD in a psychology textbook in high school, and yet another article on it in Reader’s Digest, that something stirred in me to question whether I needed to keep my unwanted thoughts and all-consuming compulsions “locked up.” What if I wasn’t a terrible person after all? What if there was a brain disorder responsible for the bad thoughts instead?

When I eventually worked up the courage to tell my parents what was happening to me, they were shocked (as was I) to learn that OCD had been completely hidden inside my mind for six years.  (Sadly, it is quite common for a person with OCD to go undiagnosed for several years.)  Although I had the classic sudden-onset of OCD that characterizes PANS, my OCD revolved almost exclusively around religious obsessions and invisible mental compulsions, which made it impossible to diagnose since I refused to bring them into the light.

As someone with PANDAS/PANS, I believe that OCD awareness is all-the-more important. It helps others better understand some of what people with PANS go through, and it helps more people figure out they have PANS.  And obviously, OCD awareness helps those who have OCD without PANS.

Personally, it was my OCD diagnosis when I was seventeen that caused my parents to stumble upon the term “PANDAS.” For years, they had researched all manner of diseases and disorders to try to figure out what happened when I was eleven that led to an onslaught of mental and physical problems, but they had never come across PANS. But reading in OCD books and websites about this little-known autoimmune disorder that could cause every health issue I’d experienced ultimately saved my life.

Today, thanks to both medical treatments for the PANS that caused the worst of my OCD and cognitive behavioral therapy for what was left of it, I have only mild OCD symptoms. Now, I want to do what I can to help others unlock their OCD boxes and learn about PANS so they don’t have to go through six years of secret torment like I did.

Let’s face it—the result of leaving OCD in a box for so long is not-so-pretty.  Like that moldy bread, the longer it goes untreated, the worse it gets…

This week is OCD Week. I hope you’ll join me in taking some time to spread awareness and possibly save someone else’s life.

P.S. Thank you to all of you who have shared last week’s post, “Why PANDAS Awareness Matters.” I have been overwhelmed (in a good way) by the responses I’ve had, and best of all, it’s been wonderful to see so many people spreading the word about PANS.  Thanks again!

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.

Over the last year, I’ve heard so many heartbreaking stories about what this illness can do. I’ve seen the look of terror in children’s faces and the grief and weariness in the parents’ eyes. I’ve watched as my own life fell apart, flare by flare, and I’ve spent what should’ve been my best years wanting nothing more than to find my lost mind.

Although PANDAS and PANS are curable, getting a diagnosis, let alone proper treatment, is far too difficult. It took me eight years to find an answer. It took me declining so much that I could longer walk, lost twelve pounds in two weeks (that I absolutely didn’t have to lose), and was psych-ward-worthy depressed and suicidal before doctors finally admitted that there could be a single cause to an alleged list of seven different syndromes and illnesses.

And I am one of the lucky ones.

My story has a happy ending. After two IVIG’s, a tonsillectomy, and a year of antibiotics and steroids, today, though I still have symptoms and take medications, I have my life back. I’m living independently, attending a prestigious university, earning straight-A’s, and making my mark in my chosen field. But without treatment, I would still be spending my days homebound, sleeping for up to twenty hours each day, unable to walk, and constantly watched by my parents so I wouldn’t hurt myself.

Sadly, my story may still be the exception—not because PANDAS is rare, but because it is common and many people may never receive a diagnosis. PANDAS/PANS is likely responsible for as much as 25% of cases of childhood OCD and Tourette’s. As many as 1 in 200 children may have this devastating condition. While some may outgrow it, for others like me, left untreated, it could lead to a lifetime of mental illness and disability.

To make matters worse, there are only a handful of doctors in the US who are considered to be experts in treating PANDAS and PANS. Their practices are overrun with cases. Waiting lists can be long. And when you finally do get an appointment and a diagnosis, treatments such as IVIG and plasmapheresis are outrageously expensive and are often not completely covered by insurance. If you’re fortunate, antibiotics might be enough to put you into remission, but sometimes, insurance won’t cover these, either.

While thousands of children and families are suffering, too many doctors are debating whether this condition even exists. Many doctors have the nerve to send families on their way, blaming debilitating symptoms on “bad parenting” or “school stress.” If we had a dime for every time we were told PANDAS is “controversial” or “not well understood,” perhaps we could pay for our IVIG treatments!

387,000 children in America (1 in 200) need treatment and shouldn’t have to travel hundreds of miles just to find a doctor who won’t dismiss their symptoms. Tens of thousands still just need answers.

October 9th is PANDAS/PANS Awareness Day. Help us raise awareness. Help us tell more doctors and psychologists so that it doesn’t take so many years of suffering to get a diagnosis. Help us get more insurance companies to recognize PANS and cover more treatments so that more patients can get the care they need.

PANDAS/PANS needs awareness because that sad girl in the hallway is in every elementary school across America—yet many of her may never know why she suddenly lost her joy and personality.

I believe that if those of us who have been diagnosed keep making noise, there will be a day when it is unheard of for a doctor to deny the existence of such a devastating syndrome. I believe there will be a day when the only thing parents have to worry about when their child gets PANS is helping him get better—not finding a believing doctor, not wondering how they can bring a terrified and uncontrollable child across the country for a consultation, and not paying for treatment.

But until then, I will keep writing and raising awareness, because for so many, that day can’t come soon enough.

PANS Symptoms Pic-small

PANS/PANDAS is an autoimmune reaction triggered by Strep, Pneumonia, Lyme, Mono, Stress, etc. resulting in an acute onset of neuropsychiatric symptoms that can include: separation anxiety, OCD, tics, age regression, ADHD, sleep difficulties, personality changes, urinary feequency, irritability, rage, sensory sensitivities, deterioration in learning abilities, and anorexia.

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.

But I never would’ve imagined I had this bacteria in my tonsils, especially since they looked small and healthy before they were removed. Although I’ve been having fewer PANS symptoms since my tonsillectomy, I was incredibly skeptical that there would be any infection found, let alone something as strange as Serratia. For years, I’ve been accustomed to undergoing all manner of blood work and tests only to have negative results.

But the other day, as I logged into the online portal to read the pathology report on my tonsils and adenoids, I was shocked to see the words, “Serratia marcescens tonsillitis.” The bacteria were not only in both of my tonsils, but in my adenoids as well, along with white blood cells. Interestingly, there wasn’t a trace of Strep or Mycoplasma pneumoniae or MRSA or any of the other more common findings in PANDA tonsils.

After months of not knowing why I was flaring every two to three weeks, I finally had a possible explanation.

I called my GP and shared the news, and she wanted to rule out an infection in any other part of my body. This meant sticking what looked like a long Q-tip up my nose, another around my butt, having me pee in a cup, and another needle-stick in my arm for a blood culture. All of these cultures came back negative, so it turns out that I’m infection-free now!

It’s unnerving to think that I had no idea there was a terrible bacteria living in part of my body this whole time. It’s even more unsettling to realize that an occult infection was essentially making me lose my mind. This is the kind of thing that could be the premise of a Sci-fi horror movie… But it’s just real life for me.

Although having this bacteria in my tonsils could explain my very frequent flares, I will always wonder: how did I get Serratia in the first place? Maybe it was the dirty sink or my orange-stained shower curtain. Maybe it wasn’t. I’ll never know. All I know is that I’m 90-95% symptom free with my tonsils and the infection gone. Whatever provoked my immune system to attack my brain and ruin my mind is gone now.

So what’s next? I’ve gone seven weeks without a flare—the longest flare-free period in the last year. If I do have another major flare again, my doctor wants me to do a three-week course of Bactrim instead of a Prednisone burst, because maybe, I’ve been flaring whenever I’m fighting off Serratia. Unfortunately, S. marcescens is resistant to many antibiotics, including penicillan-based antibiotics, so the Augmentin XR I’ve taken since October has offered no protection against it.

As for the sink… My mom has since scrubbed it out with bleach—same with the shower curtain. In order to kill this bacteria, you need to use bleach or hydrogen peroxide; it’s resistant to many other household disinfectants. I know this because, strangely, I did a long Biology report in high school about preventing S. marcescens infections.  For all I know, the whole time, the bacteria was living in my own tonsils. Oh, the irony!

Now, I’m Serratia-free, and my bathroom appears to be, too. I may not know for sure how I became infected, but one thing is certain: I’ll never again look at another pink ring in a sink in the same way!

Happy Birthday, Dreaming Panda

Cake

This week marks the one-year anniversary of my blog. To say it’s been an incredible year doesn’t even begin to describe it. I’ve come such a long way since I first started writing about this difficult journey—and so has this blog…

Last June, I’d hit rockbottom. I was in such bad shape and declining so much that I thought I’d die. Although I was otherwise dysfunctional to the point of not being able to walk, not eating, and not being able to speak coherently, I was able to write. In the countless hours my family spent researching PANDAS/PANS on the internet, they’d never found a blog written by a PANS patient. I thought maybe I could change that. I hoped that maybe by sharing my experiences, I could help someone else going through the same thing. So I started a blog.

I’ve been through so much in the last year of blogging… I finally got an official diagnosis of PANS. I had two IVIGs. I spent almost a year on Prednisone (and am still tapering off). I’ve had more horrific flares. I’ve re-started CBT/ERP therapy for my OCD. And next week, I will have a tonsillectomy and andenoidectomy. But I also ran a half-marathon and completed another year of college. Slowly, I’ve been getting my life back and shedding symptoms so gradually that I often barely notice. But yes, I’m getting better.

As I’ve shared every step of my recovery, I’ve had many amazing responses from you all. Some parents have said that what I’ve written has helped them understand what their child must be going through. Some have shared stories that make me cry—sometimes because of how much the person is struggling, other times because of an astounding recovery. Some parents have said my writing makes them cry because their family is going through the same thing. Some people have said things that helped give me the courage to keep fighting. Plus, I’ve had the opportunity to meet other teens with PANS.

The act of publishing my experiences (albeit anonymously) for the world to see has been of tremendous therapeutic value for myself, too.  Sometimes, writing has been the only thing I could make myself do, but being able to look back and see how far I’ve come has given me hope through the bad times.

The Dreaming Panda has been a humbling and unforgettable experience, especially as I’ve watched it turn into something that means something to people. Needless to say, every comment and private message has meant so much to me, because when I find out that my writing has touched someone or helped even in a small way, it helps me feel like something good can come out of this mess. While I’m never glad to hear that someone else is going through the same terrible things, I’m glad to know that maybe I’ve made just a small difference in someone’s life. So thank you for all of your responses!

As I head into this next year, I intend to keep going with The Dreaming Panda for a long time. Eventually, I plan to expand on this blog and make a book. I may be well on my way to recovery now, but sharing my journey has made me realize that there are thousands of other kids, teens, and even adults with a similar story—and some of them are far sicker than I ever was. Tragically, our illness has yet to be recognized by most doctors, hospitals, and even insurance companies. Our story needs to be told so that someday, it won’t take so many years for many of us to find the proper treatment.

So readers, I just wanted to thank all of you for the support, encouragement, and friendship you have shared with me along the way. I’m hoping that this next year brings complete healing and recovery for all of you and for me. 🙂

P.S. I’m looking for new topics to write about. I’d love to hear some ideas from you. Please share in the comments section!

My Last Piece of Freedom

Last summer, over the course of a few hours, I suddenly became unable to walk due to an autoimmune attack in my brain. If I tried to go from my living room to the kitchen, I fell multiple times because my legs would suddenly give out.

In one moment of insight during that horrendous time when I had not only lost the ability to walk but had essentially lost my mind, I said to myself, I’m going to run a marathon someday and overcome this. And I’m going to beat my best 5k time from eight years ago within the next year.

It was truly a crazy idea. Maybe I still wasn’t in my right mind when I came up with that…

For some strange reason, although I often fall down if I walk long enough, I have never once fallen while running. As far as I’m convinced, when I run, I don’t have PANDAS—I have freedom. I am in charge of a body that turned against me in the worst way imaginable. My love of running has made my ongoing walking problems far less painful to bear.

When I tried a couple runs after my first IVIG treatment in the summer, I was still so weak and malnourished that I struggled to finish a single mile at a very slow pace. But I didn’t give up…

As I started to get better, I got stronger and faster to the point that it didn’t seem unreasonable for me to sign up for a half-marathon a couple months ago. I was running up to twelve miles at once. Then, last month, I finally crushed my pre-PANDAS 5K record by a whopping 2 minutes.

Although my PANDAS had been getting worse and worse at the same time, to the point that I needed a second IVIG last month, my running successes always made me feel on-top-of-the-world in some ways.

But one night, something went horribly wrong…

I set out on a group run, and the farther we went, the more I noticed my quad hurting. I’ve had the feeling before, and usually, when I kept running, it went away. Unfortunately, this time, it didn’t.

I finished the run at what felt like a good pace, but suddenly, I was in even more pain. My knee was extremely swollen and painful. I couldn’t walk—not because of my brain, but because I was injured.

Knee

I’ve since been diagnosed with Runner’s Knee. Basically, my knee cap is not tracking in the right place, so it’s rubbing against the cartilage. My poor quad was simply trying to compensate for my bad knee on the run that night.

I’m devastated. Not only have I lost the ability to walk normally—I’ve lost the ability to run. I have no escape from my illness anymore. I’ve lost the one thing that almost always had a way of bringing me joy, no matter how bad my depression was.

Yet again, another thing meant to keep me healthy has turned against me—just like the antibodies that attack my brain. Is PANDAS going to defeat me?

I really didn’t need another thing to deal with right now. Ever since I’ve had to rest my knee by not running, I’ve been having nightmares about not being able to run. Running was my last piece of freedom, and some days, it was my only window into normalcy. Running was the one thing that gave me hope that my body wasn’t completely broken. Running was a way for me to pretend to be healthy. Running was what inspired me to keep persevering through my terrible flares.

There’s only a month until my first half-marathon. I was supposed to finish it as the ultimate slap-in-the-face to the disease that left me unable to walk. But can my knee heal up in time?

I’m starting physical therapy this week, and you can be sure I’m going to try as hard as I can to do everything in my power to heal from this injury. Dang it—I didn’t let attacks of paralysis keep me from starting to run in the first place. I’m not going to let a simple knee injury keep me off the starting line this summer!

The Blame Game

After eight years of searching for a diagnosis and then finally discovering I had PANDAS, it wasn’t enough for my family and I to simply know what my illness was. We wanted to know what caused it and who or what could be responsible:

Why did I get sick? What could’ve been done so that this never would’ve happened?

We blamed the doctors for brushing me off for eight years. We blamed them for not being willing to consider thinking outside the box. We blamed them for giving me more and more diagnoses while never stepping back to consider a single cause for all of them—while we insisted there had to be one.

We blamed the psychologists for completely missing my severe OCD at my evaluation in 2008. We blamed them for telling my parents I simply had “social problems,” when in reality, my OCD symptoms were preventing me from expressing myself to the evaluators. We blamed them for not considering OCD avoidance behavior as an explanation when they knew my brother and much of my dad’s family had OCD.

I blamed myself for not talking to anyone about my obsessions for six years.  I blamed myself for unknowingly concealing the one condition (OCD) that eventually led to a PANDAS diagnosis.  I blamed myself for not trying harder to get better after I first got sick. I blamed myself for catching the mono that led to this terrible flare last year. I blamed myself for not believing I would get better after my first IVIG, and somehow, causing it to fail.

My parents blamed themselves for not knowing I had OCD for six years. They blamed themselves for not trying harder to find an answer. They blamed themselves for “letting” this happen. They blamed themselves for passing on the autoimmune disease genes/rheumatic fever history that may have contributed to my illness.

Yes, it’s true that some of the doctors and therapists I saw over the years made mistakes and didn’t try hard to find an answer. It’s true that we would’ve found out I’d had PANDAS sooner if I’d been able to talk about my OCD. And yes, it’s true that I’ve probably inherited my parents’ bad genes.

But in the end, no one can truly be blamed for my illness.

Why do people try to find something or someone to blame for the bad things that happen?  Why does there have to be an answer?

The moment I admit that my disease is no one’s fault is the moment I admit that I have no control over it.  It means admitting that bad things can and do happen for no apparent reason.  This idea—this realization—is terrifying.

At the same time, I find freedom and hope in it.  I’m not mad at the doctors anymore, and I’ve come to understand that my family and I have done nothing but the best that we could for all these years, given the information we had at the time.

The hardest thing has been to realize that none of this was ever my own fault. It’s taken two years for me to be able to forgive myself for concealing my OCD for over a third of my life, but I’m slowly learning to extend the same compassion I have for others to myself.  I call it the Reverse Golden Rule:

“Give yourself the same grace you give to others. Don’t be so hard on yourself.”

Yes, even after my brain has healed completely, it will take a long time for my family and I to truly release ourselves of feeling responsible, in some illogical way, for what happened.  But I’m ready to stop playing the blame game. As hard as it is, it’s time to let go and focus on the hope I have of complete recovery…

Struck by Lightening… Twice

Not only is my brain messed up—so is my spine.

Not only is my brain messed up—so is my spine.

Having PANDAS/PANS by itself is a nightmare.  The ongoing concentration problems, falling when I walk, extreme sleepiness, and depression are more than anyone should have to deal with at once. But guess what? I’m living with another awful condition on top of all of that: Thoracic Outlet Syndrome.

What is TOS? Like PANDAS, it’s another condition that is under-diagnosed and often involves multiple misdiagnoses first. Basically, TOS means there isn’t enough room for the nerves and/or blood vessels that pass between the collar bone and first rib. Those of us with TOS experience numbness and poor circulation to our hands in addition to severe pain in the shoulders, neck, and back. It really sucks.

I’m told my PANS didn’t cause my TOS, but I’ve noticed that when the PANS symptoms flare, so does the TOS pain.  I think the anxiety causes all my muscles to subconsciously tighten up, thus increasing the pain (it’s just my guess).

I’ve been in constant pain from TOS for the past six years.  I was told from the beginning that I would have it for the rest of my life.  After being diagnosed, I felt like my life was over, and I sometimes wished I’d never been born.  Thank God my worst PANDAS flare happened before I developed TOS—otherwise, I’m sure I wouldn’t have survived…

Eventually, I simultaneously began to live in denial of how bad the pain was while accepting that I would never get better—just like I did with the intrusive thoughts until I was seventeen.

But no matter how normal numbness in my hands and constant pain have become, every once in a while, something stirs in me to fight back, kicking and screaming with all my might.  A few days ago, I got to that point again. I realized that I’m nearly twenty years old, and my pain only keeps getting worse.  If I don’t do something, I’ll surely live the rest of my life like this—and I don’t want to accept that anymore.

So I decided to confront my TOS head-on and try something new: I called a chiropractor. Considering how bad my social anxiety has been, the fact that I could even make that phone call is amazing—or maybe it shows how desperate I was.  I like to think it’s a sign of progress with PANDAS symptoms…

Whenever I’ve mentioned to doctors that I have Thoracic Outlet Syndrome, they either give me the “wow-that’s-terrible-I’m-so-sorry” look or they tell me TOS is very rare, not well understood, and possibly non-existant—funny, because those are the same responses I get about PANDAS. But not so with this chiropractor:

“When I put your arm to the side like this, your pulse is instantly gone in your arms.”

This alarmed me, of course. “What?!  Are you sure?  How is that possible?”

“You definitely have Thoracic Outlet Syndrome.  But don’t worry… I can fix it.  I’ve never had a case of it I couldn’t fix.”

The evaluation and diagnosis reminded me too much of seeing the PANDAS specialist this summer who said I “definitely” had PANDAS and continues to tell me that I’ll get better. The fact that I have Thoracic Outlet Syndrome isn’t news to me, but somehow being told again that I have it is a shock that forces me to confront it—just like I was 95% sure I had PANS before I got to the specialist this summer but still cried at the diagnosis.

I’ll be spending the next couple months going to the chiropractor three times a week and doing rehab—while still trying to get over PANDAS and worrying about and expecting another IVIG or plasmapheresis. (My sleep issues, depression, and ataxic walking are completely out-of-hand.)  Why is it that I have to fight two devastating conditions at once?  How much suffering can one person take?  I feel like I’ve been struck by lightening twice.

With both my TOS and PANDAS, I’m afraid to believe that I’ll actually get better, because I’ve been disappointed so many times. But I’m sure going to try…

What I Learned from Losing My Wallet

Recently, I had the misfortune of losing my wallet. Anyone would be upset and worried about losing something that contained your credit and ATM cards, driver’s license, school ID, cash, car keys, and apartment keys. But I had another concern: as soon as you open my wallet, you can see a medical information card that gives away all kinds of personal health information.

If I were ever in an accident or had another emergency, it’s a good thing that this information is so easily accessible. But in this case, I couldn’t help but wonder who was going to read it. There’s no way whoever found my wallet wouldn’t see it. I had managed to keep my illness a complete secret from everyone but my close friends and professors, because I didn’t want to be treated differently. Would this be the day that everyone found out?

As soon as I got back to my apartment, reached for my keys, and realized my wallet wasn’t in its usual place, I set out on a trek across campus to retrace everywhere I had been that morning. I went to campus security and told them my plight. Nothing had been turned in. I went back to the classrooms I’d been in earlier in case it had fallen out when I sat at my seat. No luck.

Finally, I went to the front desk of one of the buildings where I’d had class. Without a word, the secretary handed me my wallet with a little smile. Nothing was even missing. Some kind, honest human being had turned it in.

What you need to understand is that, a few weeks prior, this secretary had given me a really hard time about being late to order some course materials. The school was trying to make only one order, but whenever stragglers like me missed the deadline, they had to place another one which cost more money. In all fairness, I shouldn’t have waited until the last minute, but when it was all I could do to just get out of bed in the morning and fight through crippling depression and extreme sleepiness all day long, ordering textbooks wasn’t really a top priority.

“You should have done this five weeks ago,” she said angrily that day. “Oh, you don’t have a checkbook with you? Go to the bank right now and get some cash.”

I wanted to cry. Do you have any idea what I’m going through right now? I thought to myself. If only you realized that I truly am doing the best I can. I never wanted to cause anyone any trouble. I wasn’t just being lazy and inconsiderate by waiting this long.

But ever since I lost my wallet, this woman seems to be treating me a bit more gently. I’m sure that she looked in my wallet and read my card. Now she does know what I’m going through.

I’ve often wondered what would happen if I carried that card on the outside for everyone to read. What if we all were more open about what we’re up against? I have frequently longed to just come out and tell everyone, “Hey, I have this awful disease. It sucks. Please give me some extra love.” But I haven’t. Maybe it’s time to rethink that…

When you live with an illness with such a profound impact on your life, there’s always a struggle between telling people what you’re dealing with so that they can understand you better and not telling people so that you can maintain a sense of privacy and maybe even forget that there’s anything wrong with you on the good days. I still haven’t figured it out.

While I certainly wish I had never gotten PANS, the one good thing it has done is make me a more compassionate person. I’ve come to realize that everyone has a card—struggles, difficulties, and bad circumstances that, if we knew about them, would explain some of the seemingly annoying or inconveniencing things people do. You rarely get to read someone else’s card, but I’ve learned to try to give people some grace, because I have so often wished for others to do the same for me.

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.

I thought I was going crazy. I had to speak a certain way. I had to walk “just right.” I needed to be sure I chewed my food in a particular manner. And God-forbid if I breathed the wrong way… I also felt like I needed to jump out of the second-story window of my room. Why? I didn’t know. It just seemed like something I should do—it wasn’t because I was trying to hurt myself. I would impulsively taste things that shouldn’t be tasted—like shower gels and wet rocks I found in the woods. Again, I didn’t know why I did those things, but I just felt like I had to.

I refused to do my schoolwork. I looked at the words on the page of my textbooks, and they become horrible blasphemous thoughts in my mind. The thoughts never left me alone. Every moment of every day, no matter what I did, there they were to torment me. Everything I did was used against me to become something terribly immoral that showed I was a wicked child. To me, having the thoughts come was just as bad as saying them out-loud and meaning them—damning and perhaps unforgivable.

During school, I would sit and stare at the blank lines of my notebook paper, unable to explain that I was terrified of what the words I was supposed to write could become in my mind. My mom (who homeschooled me at the time), eventually would become exasperated, and I would run out of the room both because I couldn’t handle the OCD thoughts and because I couldn’t stand to make her so upset. But I couldn’t even tell her that I never wanted it to be that way. I didn’t want to not work. I didn’t want to make her cry. I just wanted the thoughts to not be there.

“Why are you doing this to your mother?” my dad asked one night, as the three of us sat around the kitchen table. “She is sacrificing her time to teach you, and you aren’t even trying to work with her.”

I will forever remember that lonely tear that streamed down my mom’s face at that moment. My best friend, teacher, and care-taker had now become someone I had deeply wounded by unintentionally fighting against her.

I never meant it. I wished I could tell my parents that I wasn’t trying to upset them. I longed to break my silence and explain my inner battle, but telling anyone the horrible thoughts I was having would show them how terrible of a person I really was. So I sat there in silence that night, unable to respond with even one word, because whatever I said would be turned into another obscene thought in my mind. I couldn’t let that happen, because it might get me thrown into Hell forever.

“Why won’t you answer me?” my dad said.

“I—I…” I couldn’t get the words out. Another thought had come into my mind, and I had to be sure I canceled it properly before going on. “I—just… I don’t know. I am—I can’t.” The thoughts were overwhelming my mind again, and I was terrified that I wouldn’t be able to know I had cancelled them properly if I said anything else.

I couldn’t handle seeing my parents so upset anymore. I ran upstairs and slammed the door to my room and cried. Why was this happening to me? How could I have let my mind become so out of control? I knew I had no control over the thoughts, yet I was somehow convinced they were all my fault.

If there is one thing I would have told my parents back then if I could have (besides telling them that I actually had an autoimmune disorder causing all my OCD and strange behaviors), I would tell them that I hated what I had become and what I was doing to them. I would tell them that I didn’t want to be doing any of it—I was simply scared out of my mind, by my own mind.  I wished I could have told them that all the pain I caused them was wounding me even more.

I longed for my parents to understand the constant terror that I lived in and the feeling of utter hopelessness so that they could see I wasn’t just being a brat. I wanted to not feel like I was so alone. But I was afraid that talking about the thoughts would end up proving to me and everyone else that I really was a reprobate. As painful as it was, it seemed like the only thing I could do was to keep pretending that my silence and school-refusal was just me being a rebellious preteen.

After three months in a perpetual state of OCD fear and bizarre and even dangerous behaviors, I finally began to come out of the flare. Looking back, I had been having joint pain, fatigue, and consistent low-grade fevers throughout the entire episode—symptoms of another strep-related illness called Rheumatic Fever. When these began to disappear, so did all my psychiatric symptoms. (Of course, my pediatrician at the time never even thought to do a strep culture and wrote it all off as “depression” and “isolation from homeschooling.”)

It took five years of time passing and me eventually being able to name my intrusive thoughts and compulsions as OCD before I would even let my parents bring up anything about what happened in 2007. When I came out of the flare sometime in early 2008, I apologized profusely for the wounds I unwillingly made in my relationship with them. But those wounds did heal, and my brain is healing, too. Today, my parents and I have a great relationship, and of course, now they understand what I was dealing with—and they remind me it was never my fault.

I wish I could have told my parents in 2007 where things would be today.  I wish they could have seen me now, in my right mind, going to college.  I wish I could have told my parents that, even though I was going to have another terrible flare at nineteen that led to a misdiagnosis of narcolepsy, made me temporarily lose the ability to walk, and caused a tic disorder to appear overnight, we would finally find the answer to all of my strange symptoms.  I wish I could have told my parents that even though my case was extreme, I was going to get 100% better.

Most of all, I would tell my parents “thank-you” for persevering through my strange behavior in 2007, for not giving up on finding a diagnosis, and for sticking by me as I continue to recover today.

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. Not all OCD is caused by PANDAS/PANS, but no matter what causes OCD, it is a devastating and frightening disorder when left untreated—especially when you don’t know you have OCD, as was my case for six years.

Because I have PANDAS, I can tell you the day that my OCD started. (With non-PANDAS/PANS OCD, the onset isn’t so sudden.)  I was eleven. I went to bed one night, and while reading in bed, a terrible blasphemous thought entered my mind. Most people would have let it go, but I couldn’t.  In an instant, my whole world was turned upside down as my body produced an autoimmune response against my brain that gave me PANDAS, and thus, OCD.  I began having the first panic attack of my life, because I suddenly had an irrational fear that the one intrusive thought had doomed me to Hell.

What could I do? I was eleven years old, but I couldn’t bring myself to tell my parents my terrible fate of eternal damnation. I couldn’t tell them about the thought either, because then they would know how bad of a person I was for having it come into my mind in the first place. There are no words to describe the horror that I felt, and the worst part was the feeling of being alone—that I couldn’t tell anyone and that even God had turned against me. There was no hope.

I was not doomed to Hell of course, but living with PANDAS-triggered Scrupulosity OCD sure felt like it. Before long, my mind was a constant cacophony of intrusive blasphemous thoughts that I hated. Every time I read a book, the words morphed into even worse thoughts. When I walked, the rhythm of my steps became an obscene word. It got to the point where I literally wouldn’t write or say anything because everything turned into an intrusive thought…

Even if I answered a question someone asked me by saying “Yes,” I was afraid I would actually be affirming a “bad thought”—even if the conversation had absolutely nothing to do with my thoughts. If I said “No,” I might cancel out a “good thought,” which would have been just as bad. The worst feeling was wondering whether or not I had “cancelled out” the bad thoughts properly, because sometimes, I would lose track of my mental rituals. One time, I accidentally said one of the intrusive thoughts out-loud, and I worried about whether I cancelled it properly for the next five years.

At eleven years old, I thought I had to be going crazy. I couldn’t understand why it seemed like my mind was full of thoughts that weren’t my own; I wondered if I was possessed. I knew that no one should be afraid of the things I feared. At the same time, I felt like I had to keep following the rules and doing the compulsions just in case they were rational. What if everyone else was crazy and I was sane?

With OCD, there’s always another what-if and another precaution that you have to take in order to neutralize an obsession. For some people, the obsession is getting sick or getting someone else sick, so they wash their hands a particular way and a certain number of times in order to stop that bad thing from happening.  For me, the obsession was Divine judgement, so I become consumed by morality and carried out silent mental compulsions to “cancel out” any kind of immoral thought that entered my mind. It was as if I always had to decontaminate my mind. Of course, it was never really decontaminated, because the intrusive thoughts would come back as soon as I tried to stop them.

So how in the world did I escape from that prison?  When I was seventeen, in the second worst OCD flare of my life, for the first time, I began to ask a different what-if… What if these thoughts were not my fault? A lightbulb went off. I remembered reading an article in Readers Digest that said OCD involved repetitive unwanted thoughts.  I googled OCD, and a chill ran down my spine as I read a description of the Scrupulosity type and realized it was everything I had been experiencing since I was eleven. It took a couple weeks, but I eventually worked up the courage to tell my parents I needed help.

Today, I can say that, thanks to therapy, I am 90% free from Scrupulosity.  Because I have PANDAS, my OCD gets dramatically better and worse over time, and I still have contamination OCD.  Even so, thanks to Exposure therapy, my OCD has never gotten as bad as it once was.

Somewhere, in the middle of my OCD mess, I met a loving God that wasn’t just waiting to smite me the moment I didn’t cancel a thought properly. When I realized who God was, over a few months I was eventually able to stop my mental rituals on the leap of faith that they weren’t necessary. It was terrifying, but the moment I stopped believing the intrusive thoughts had any power was the moment I was set free.

If I had known sooner that OCD could take the form of intrusive thoughts and mental rituals, I could have had a better adolescence. And I certainly would have figured out I had PANDAS much faster. For my parents, it was horrifying for them to realize I had been mentally tortured by OCD for six years without them knowing.  As my mom put it, “You were too strong for your own good. Most kids would have eventually cracked under that kind of pain.”  I know there are a lot of other strong people out there. How many others are silently locked inside a prison that exists in their mind?

Whether one’s OCD is caused by PANDAS/PANS or not, I want everyone to know that there is hope. No, you’re not crazy. And no, you probably aren’t the only person who has that obsession.

If I ever have children, we will talk about OCD and talk about thoughts that come into their minds that upset them. I will tell my children that any thought that enters their minds that they hate isn’t their own. I will tell them that they aren’t responsible for thoughts that happen against their will. I will tell them that even if the bad thoughts were their own, God wouldn’t love them any less. And I will tell them that God understands how the brain works and isn’t intimidated by intrusive OCD thoughts—or anything else that can be thought.

My parents did everything right—they sought out the expertise of psychologists and counselors, but I was so afraid that I hid my OCD skillfully. The only thing that could have gotten me help sooner would have been if someone asked if I ever had repetitive, unwanted thoughts.  Why did none of the professionals ask? People need to know that OCD can be completely hidden in the mind—it’s so much more than a personality quirk or germaphobia. People need to know that they’re not alone in fighting thoughts that they’re too ashamed to mention. People need to know that OCD is treatable.

I Officially Have PANDAS!

So I went to see a PANDAS specialist this week, and I’ve finally been diagnosed with PANDAS.  My doctor was wonderful and finally took my symptoms seriously.  She even said my mysterious illness from 2006-2007 may have been Rheumatic Fever. And unfortunately, she told me I’m not just having tics, but also chorea, which could explain my strange falls when I walk.  The best words my doctor said were, “You’re going to get better.”

She has put me back on Prednisone for six weeks along with a different antibiotic called Cefdinir.  I am in such a bad flare right now that she wants me to do IVIG as soon as possible. She was very troubled by everything I had been through and decided that eight years was long enough and we should just knock out the disease with the stronger method of IVIG treatment.  Plus, my movements have not improved at all with antibiotics.

I don’t even know what I feel right now.  I’ve waited so long for someone to tell me for sure what my illness was, and now someone did.  I still can’t believe it.  I’m ecstatic and terrified all at the same time…

I’m grateful, because most people with this condition never get a proper diagnosis. They estimate 160,000 people in America have my disorder, but it was only discovered in the late ’90’s, and only several thousand people have received a diagnosis. Many people suffer through years of treating the symptoms, only to have treatments fail. Now, I don’t have to do that for another single day.

I’m shocked, because having a diagnosis means there’s no way for me to deny to myself that things aren’t as bad as they really are. For months, I’ve coped by trying to tell myself that I don’t feel “that bad,” and I still haven’t fully processed what has happened to me. I’m still surprised every time I wake up in the morning, fall down, and realize again that I can’t fully control my movements. When a neurologist gives you a name for your condition, it’s like a Mack truck running you over with shock, because you realize that this is your reality right now.

I’m so, so happy, because I’ve been told I’m going to get better. For eight years, I thought I was stuck with all these crazy symptoms. I believed it was all just going to always be part of my existence. But now, I’ve been told it doesn’t have to be, and it’s an incredible feeling.

I’m worried, because I have to have IVIG in another week, and for 10-15%, it doesn’t work.

I’m scared, because they still know so little about this disorder. How do we really know I won’t relapse in a decade or so? Or even in another few months?

I’m sad, because now that someone has told me what has been wrong with me, I know that I’ve lost eight years of my life to a disease that could have been treated if it had been diagnosed sooner. Even after I’m better, I think I’m going to have to go to counseling to avoid PTSD…

I’m angry, because I can’t understand why any of it had to happen to me. Seriously, why me? And why does this happen to anyone? I am filled with grief when I consider how much pain it has caused me and when I realize there are thousands of others like me. It’s just too much. This has been a major struggle in my Christian faith lately. I’ve read the book of Job a lot, and I’ve just decided that there is no answer for now—there’s only trust in spite of my lack of understanding. That’s why it’s faith—because you don’t see signs or answers—not because you do perceive it with your eyes.

Most of all, I’m relieved, because I finally have an answer and a productive way forward. I’m in good hands with this new doctor, and even though it could take up to a year for me to recover completely, I truly believe that I will get better. Oh, and my doctor said that, given my response to steroids and antibiotics, there’s no way I have narcolepsy.  Phew.  Yes, my PANDAS diagnosis is wonderful news!

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