PANDAS & Lyme: My Recovery and 8 Years of Misdiagnoses

Posts tagged ‘Treatment’

3 Years Later… The Beginning of the End?

Celebrating 3 years of blogging and the beginning of the end of my battle?

Three years ago today, I published my first post on this blog.

At the time, I was in a downwards spiral, falling apart and losing my mind. My doctors were baffled and running out of treatment options, and I was threatening to take my life. But then, my family figured out I had PANDAS/PANS. Thus began a three-year fight to regain everything my illness had so suddenly stolen from me.

Back then, it seemed I was the only 19-year-old on the planet who was fighting for their life against this allegedly pediatric condition, PANDAS/PANS. There were no blogs written by patients—only parents. I wanted to read from someone writing about going through what I was going through; I wanted someone to show and tell me that I would be okay. Since I could find no such blogs at the time, I figured I might as well be the person to change that so that something good might come from my ordeal one day.

Today, in 2017, I can say it’s been quite a journey, but I almost dare believe I’m now 95-99% recovered. I’ve been through three high-dose IVIG treatments as well as eight low-dose IVIG infusions. I’ve endured tonsil/adenoidectomy, over a year of steroids, month after month of antibiotics, and countless therapy sessions. Although I still take medications and follow a Lyme disease antibiotic protocol, today, I’m able to live my life, and I’ve managed to accomplish things I never would’ve dared to dream when I started this blog.

So I wanted to take a moment to thank all of you for reading The Dreaming PANDA and for offering your encouragement and prayers over the last three years. I’ve probably never met any of you, but your support has meant the world to me. Thank you for taking the time to read what I write, and sometimes, to reach out to me. It can be lonely to deal with a life-altering disease, but this community has kept me going—and I sincerely hope my writing has helped you in some way, too.

I’m not quite ready to stop this blog just yet—in fact, I’m not sure if or when I ever will, since I have more readers than I ever thought I would when I first started. I don’t ever want to stop raising awareness, and I have every intention of continuing to bring hope to those of us who’ve been affected by PANS and Lyme.

For this reason, I’m planning to write a memoir in the near future, and I intend to post excerpts along the way. With any luck, however, I’m now living in the final chapter of my recovery journey.

I know a lot of you are probably out there wondering if you or your kid will ever get better and live a productive life—just as I wondered when I began writing three years ago. You might feel hopeless and think that no one can get past this. It’s often been an impossibly hard journey, but you know what? Yes, I’m okay now. And you can get there, too.

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.

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?

I somehow managed to list all three of my psychiatric medications, along with the five antibiotics I rotate in my Lyme protocol. Hesitantly, I also listed Lyme disease as a current medical condition, mostly to explain the many antibiotics. But then I paused… Do I really need to list PANS, too?

You see, in all three of the major PANS exacerbations I’ve had in the last ten years, I’ve not only dealt with crippling OCD, anxiety, depression, cognitive problems, and movement disorders, but I’ve lost my very self; I’ve felt and acted like a different person that no one recognized. Contrarily, I’ve recently started to feel like my “normal” self. Does that mean I’m better now?

During my worst times, it was like an invisible wall had shut me inside my own tormented mind. I was trapped within my own thoughts, yet completely outside myself. I saw the world, but I wasn’t part of it. Life had lost its colors, and my days ran together in a blurry mass of the black and white of OCD, and the gray of depression. My body was alive, but the person I had been was gone.

While each episode could start overnight and suddenly take me away, coming back to life post-IVIG has always been such a long and slow process that I’ve never been able to pinpoint an exact time when I’ve returned; I slowly regain myself and watch symptoms die away at a glacial pace, and it eventually occurs to me that I’m fully present again.

By now, it’s been over a year since I caught Lyme disease and suffered my third major PANS episode, ten months since the high-dose IVIG that was meant to bring me back, and five months since I began Lyme treatment. And recently, I realized that I was finally myself again. So can I legitimately say I have PANS anymore? For that matter, do I really have Lyme?

I know too many people with PANS who are home-bound, yet here I am, driving around town and trying to meet new people just for fun. I know some with Lyme who can’t get out of bed, but I just ran my second half-marathon (albeit five days after an 103º fever herx). I know kids who would love to be able to go to school but cannot because they are too cognitively impaired from their illness—and then there’s me, with eight semesters of college completed and a 3.94 GPA. I know PANS and Lyme kids who literally want to die and can’t even bear to think about tomorrow, but I’m sitting here looking forward to a summer internship. How can I be sick?

Unfortunately, just because I’m “back” and appearing to function quite well doesn’t mean I’m better—far from it. My anxiety has gotten so bad that I’m now taking the anti-psychotic Seroquel each night to help make it manageable. Plus, I remain on Lamictal and Wellbutrin for other psychiatric symptoms. Most days, I continue to have a hard time walking, and I have so many (small) involuntary movements that I physically cannot be still. Oh, and quite often, my speech comes out nonsensical.

There was a time when I was that kid who wanted to die and couldn’t even manage to go outside—indeed, my severe anorexia meant I was slowly dying last summer. Now, I’m the walking wounded; I still get around and can put up a good fight, but I’m not completely okay, either. I have myself again, but I also have plenty of symptoms.

And so, I added “PANS/Autoimmune Encephalitis” right along with “Lyme Disease” on that form the other day. I’m so grateful to have returned to myself, but I’m seeing that healing a brain and an immune system is a long and arduous process (and there’s always the possibility of a flare or relapse). I await the day when my symptoms are finally gone.  So despite my apparently high level of functioning, yes, I really do still have PANS and Lyme—even though I also have myself again.

The True Meaning of “Tired”

tired-panda-small

When people ask how I’m doing these days, I never know how to answer, so I just say to everyone:

“I’m tired.”

But this isn’t a tired that can be relieved with a good night’s sleep, a break from school, or a hot cup of coffee—this is a tired that penetrates my very soul. It’s a tired that makes simple tasks take untold mental effort. It’s a tired that makes me uninterested in anything more than surviving each hour ahead. It’s a tired that makes me wish people would stop asking about my post-college plans, because I don’t even know how I’ll get through today.  This is a tired that’s sucking the very life out of me.

It’s now been about two months since I began Lyme treatment, and I’ve been herxing every two weeks; just as I recover from one reaction, I start having another a few days later. Each herx not only makes me physically tired, but the roller-coaster of symptoms leaves me mentally exhausted as well. With the last two herxes, I’ve ended up worse than before once they’re over.

Now, after three herx reactions, I feel like my life is slipping away between my fingers, and there’s nothing I can do to stop it. I neither recognize myself nor the nightmare unfolding before my eyes.

Lately, I’ve felt totally out-of-control; one moment, I’m almost okay, and the next, I’m repeatedly telling my mom that I want to die. One moment, I’m able to struggle through homework (albeit slowly and with great difficulty), and the next, it’s as if someone has “wiped my brain;” I suddenly become confused, disoriented, and unable to say little more than choppy words and gibberish.

To make matters worse, my eating disorder is so severe now that my psychiatrist thinks I should start intensive outpatient therapy. My mom has moved in with me, because I can no longer take care of myself. I usually can’t go to work, and I’ve had to drop some classes that I was really enjoying. But truly the worst of all of this is that I’m so depressed that I’m sometimes mad at God in the mornings simply because He let me wake up again.

I’m tired of watching myself fade away. I’m tired of getting better only to get worse later. I’m tired of PANS. I’m tired of Lyme. I’m tired of endless treatments and trips to the doctor. I’m tired of watching life go by while I stand still. Sometimes, I’m simply tired of living at all. How much longer can I keep doing this?

But you know what? The runner in me still knows that being tired doesn’t mean you have to give up. No, “tired” is a challenge and a dare to keep moving forward despite your body screaming at you to quit. Some of my best runs have been those when I was sure I couldn’t take another stride, and yet I went on for several more miles, running faster than I thought was possible.

I may be tired, but with God, I’m stronger than I’d ever dare to believe. I don’t know how many more miles I have to run like this, but one thing’s for sure: I will keep pushing forward, even if it means crawling across the finish line of this disease, tired, exhausted and gasping for breath.

Why I Look Forward to Tomorrow

Being symptom-free was like waking up from a ten-year slumber

Being symptom-free was like waking up from a ten-year slumber

Last week, as I climbed into bed and turned out the lights, I experienced something very strange: I realized I was looking forward to my tomorrow. In that moment, it struck me that after ten years of PANS, I couldn’t recall the last time I was truly excited about waking up for another day.

It’s not that I haven’t looked forward to anything in life for all these years—there have been plenty of better times when I’ve been excited about a particular event or a single aspect of a day. But rarely, if ever, have I looked forward to simply living.

Much of the time, I don’t live, so much as I merely survive. I’ve achieved great things in spite of my illness, but my victories are always shrouded in a cloud of depression and anxieties—I may do “normal” things, but no one knows how many obstacles I face in the process. In good times, PANS trails behind me like a shadow, reminding me that any day, it could come back and envelop me—which causes an unconscious sense of dread for each day to come.

But for a few days last week, that shadow was gone. While I still had a few tics here and there (and ongoing food challenges), I otherwise didn’t notice my symptoms at all. I had a mental clarity that I hadn’t experienced in at least a decade—no more depression, no more anxiety, no more ADHD, no more cognitive problems, no more brain fog—just clear thinking and happiness. It felt like waking up from a ten-year slumber.

Amazingly, it just so happens that this week marks the six-month anniversary of my third high-dose IVIG. I’ve always been told that it’s usually 4-6 months (and sometimes up to a year) before the full effects of IVIG kick in, so it seems that I’m right on target.

Unfortunately, the “awakening” I experienced a few days ago didn’t last: I’ve since had another herx reaction from my Lyme treatments, which has brought back the brain fog and depression, along with feeling like I have a bad case of the flu. It’s terribly painful to have had a taste of normalcy and good health, only to be dragged back into the mud of PANS and Lyme.

Nevertheless, I’m trying to look on the bright side and realize that herxing, by definition, means the Lyme bacteria are dying, and I’m getting better. Moreover, having experienced this latest bout of remission—the first time I’ve looked forward to life in a decade—gives me great hope for the future.  If I can have five days of remission like that, then why should I not believe I can someday be that healthy all the time?

Now I look forward to tomorrow because I have reason to believe and hope that I’m on my way towards forever beating PANS and Lyme.

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:

What tests did you do?
Igenex Labs. Insurance may or may not cover these Lyme tests, but the standard CDC Lyme tests are highly inaccurate and very often give a false negative when a person actually does have Lyme. Even Igenex can give a false negative, but it misses fewer cases.

If you do get a positive Igenex result (like I did), it can make diagnosis easier.  Nevertheless, Lyme Disease is still considered a clinical diagnosis, so Lyme specialists won’t rely on tests alone to diagnose you—they’ll also consider symptoms and history.

Who ordered the tests?
In addition to my PANS specialist, I have a local GP who is easier to get in contact with, so my parents and I asked her to order Igenex. Although she doesn’t know a whole lot about Lyme or PANS, she’s been very open-minded and willing to try anything reasonable that might help me.  Basically, it was our idea, and she agreed to do it.

Why did you think to test for Lyme?
My PANS doctor told me a year and-a-half ago that it would be extremely unlikely for me to relapse ever again or to need more treatment. But guess what happened this spring? Arguably, this latest PANS exacerbation was my worst ever, which was totally unexpected at age 21, given that it’s supposed to be a pediatric condition.

We all knew this meant some major trigger must have been at work, and given how much time I spend outdoors, a tick-borne illness seemed reasonable.  Although I’d improved since my IVIG in the summer, it felt like there was a missing piece in the puzzle.  I’d heard from many readers that Lyme is common in people with PANS, so my team thought it was time to rule it in or out for sure.

Did you have a tick bite or the Lyme bull’s-eye rash? Do you remember getting sick?
Growing up playing in the woods, tick bites were a given, but I don’t remember having any over the last few years, and I never had a rash. But apparently, only about 50% of Lyme patients get the rash.  However, in the spring, I had a flu-like illness, and I was bedridden for days. Mentally and physically, I never fully recovered. Then, I had heart and nervous system issues (including POTS) that I’d never had before, followed by a descent into a horrific flare of PANS symptoms. It wasn’t the flu—it was Lyme.

Should I get tested for Lyme?
I’m not a doctor and don’t know your history, but if you’re not able to get all the way better with only PANS treatments, please talk to your doctor about Lyme.  Better yet, look into Lyme disease before you go way down the rabbit hole of autoimmune treatments.  While not everyone with PANDAS/PANS has Lyme, it’s still very common in people with PANDAS/PANS, along with its co-infections (Babesia, Bartonella, TBRF, Ehrlichea, etc). The sooner you get treatment for these infections, the better.

My Lyme specialist believes I’ve had Lyme for a decade (though I remain skeptical of this). I can’t help but wonder what my life would’ve been if I were properly tested ten years ago. Don’t make my mistake.

What are your treatments?
I take two antibiotics and seven different supplements/vitamins each day. I also follow a gluten/grain-free diet (almost Paleo) and detox with Burbur and Pinella. And of course, I still take a couple psychiatric drugs (Wellbutrin and Lamictal) to manage my symptoms in the meantime. Everyone’s treatment regimen is unique, though, so don’t be surprised if yours is quite different from mine!

What’s the prognosis?
Every person responds to Lyme disease and its treatments differently. Some people take weeks to heal, others take months, and I’ve heard of some people taking years. For me, I’m expected to be in treatment for the next year and-a-half, and then I’ll just be monitored. The doctor says someday, I’ll get completely better, and with any luck, when my Lyme is gone, my PANS will be, too.  But for now, I’m just taking it one day at a time…

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I hope this answered all of your questions!  If not, feel free to ask more in the comment section below.

Please, please, please look into Lyme disease if you have any symptoms that never seem to go away or that come and go in cycles. PANS is treatable, but sometimes, it’s complicated by Lyme. Just keep searching and hoping, and don’t give up.

For more information about Lyme, be sure to check out: http://ilads.org

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!

The Puppy Is Alive!

Puppy

With another semester of college done, I can truly say I thrived under exceedingly difficult circumstances. Several months ago, I vowed to stop trying to live up to the expectations people had for me as a top student in my program, but instead, I ended up exceeding them with yet more awards and accolades—I got all A’s, again. Frankly, I’m not sure how I do it…

But unfortunately, instead of coming home and taking a victory lap, I staggered across the finish line of the semester and face-planted with a flare. The drive home was interrupted by my first panic attack in a year, and the moment my mom pulled into a gas station, I got out of the car and started yelling, bawling, threatening to run off, and ticking violently, surely appearing psychotic to everyone around us. Somehow, my mom eventually coaxed me back into the car, but I spent the rest of the trip completely tormented by thoughts that tried to tell me I wanted to die.

In typical PANS fashion, I’ve been falling hard and fast into a very dark place. The day I got home, I could do nothing but lie on the couch doing mindless activities on the computer to distract myself from the tormenting, looping thoughts. But at some point one evening, my concentration on an iPad game lapses, and the thoughts come rushing back.

My mom looks over and notices the tear trickling down my face. She knows what’s coming…

Indeed, I can’t hold it in any longer. I burst out into a rant about how fat I am, my latest 20-cookie binge, the shin splints keeping me from running, the torment in my brain, the dreams I’ll never achieve thanks to PANS, and the hopelessness of what seems like an endless cycle of relapse and recovery.

“I shouldn’t have come home. All I do is make you all unhappy!” I finally blurt out, upon seeing my mom join me in crying.

She tries to remind me of the joy I also bring and says her tears are because she can’t help but hurt for me. She tells me to imagine I had to watch a puppy being tortured, and that I’m that puppy to her. I mutter yet another suicidal remark before my dad interjects:

“It’s not any better if the puppy is dead.”

I know he’s right—I really do.  But sometimes, this makes me feel even more hopeless because I know I’m stuck living in a miserable condition for the time being.  However, some part of me deep down knows that permanent PANS is not my destiny, so that’s why I choose to keep enduring flares like this one and not give up.

“We’re going to see the Lyme doctor this week,” my mom reminds me, trying to give me a ray of hope that we’ll find something to get me better. But you know what? I’m sick of being a human guinea pig while doctors figure out how to treat a disease that, despite increasing research, is still poorly understood. I’m tired of enduring what sometimes feels like two years of medical experiments with no conclusive results.

But alas, this puppy is not dead. It may be tortured, but the torment will not kill it—not physically, not mentally. And historically speaking, whenever the pain comes, it soon ends with the right intervention.

Sometimes, when I’m in a place like this, I try to not think about my “real” self—the person I am when the tendrils of torment and despair are not constricting me. I don’t like to realize how many things I’m missing out on or to understand how much I’m no longer able to do. But truth be told, I somehow accomplished everything I wanted this semester, and I even ended up with more friends than ever before.  Life isn’t always as hard and painful as it is at the moment.

So it’s true: this puppy is still very much alive and fighting. And my successful semester proves that I’m determined to someday win the war with PANS.

The PANDAS Games

Does anyone ever win the PANDAS Games?

Does anyone ever win the PANDAS Games?

During one of my many insomniac nights recently, I found myself watching the second Hunger Games movie, Catching Fire. While I knew this wouldn’t exactly soothe me to sleep, there was one quote in particular that’s haunted me continuously:

Haymitch: No one ever wins the Games… There are survivors. There are no winners.

Lately, I’ve been feeling like that about my fight with PANS and about my health in general, because I just got some troubling news: I tested positive for Babesia, exposure to Tickborne Relapsing Fever, and possibly Lyme Disease. Just when I thought I was back on track, I’ve now found out that I could still face a long road to healing.

And of course, all of this is on top of my ongoing challenges with PANS, anorexia, and an immune-deficiency. I’m back at a healthy weight at this point, but some days, I’m still so incredibly tormented by the anorexia thoughts that I’ve considered spending my winter break in residential treatment. And my Common Variable Immune Deficiency (CVID) means monthly low-dose IVIG treatments, which means I spend a day at an infusion center each month and then feel exhausted for almost a week afterward.

Some days, I don’t think it’s ever going to be possible for me to win the “PANDAS Games.” I know I’ll survive, but will there ever really be a time when I’m well without taking antibiotics and antidepressants, getting monthly infusions, and constantly worrying about avoiding Strep?

For those of you who don’t know the story of the The Hunger Games, in the second movie, the people who won the Games in the past were forced to compete in them yet again, after they’d been crowned as victors and promised a lifetime of security and riches. I’m no different from those people. I beat PANS a year ago and went on to live my life and do some pretty amazing things, but then it came back this summer, and I’ve been forced to compete in the PANDAS Games all over again. Can I really win this time around, too?

Fortunately, my doctor, who’s one of the leading experts in PANS, has told me since that first day when I limped into her office two years ago that I’ll get totally better someday and be able to put all of this behind me. She’s repeatedly said that, with proper treatment, no one has to be stuck with PANS forever.

I certainly have my moments of doubt, but it’s true that, even now, I’m well enough to be making straight-A’s in part-time college, holding a (very) part-time job, and socializing more than ever. Oh, and I just ran eight miles this weekend, while in July, my POTS basically made me pass out from just standing up. Even if it seems like it’s impossible to win these games, the fact is that I’m well on my way to being crowned a victor, yet again.

Haymitch might have been right about the Hunger Games, but he’s wrong about The PANDAS Games: someday, somehow, I’m going to be a winner for good.

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.

I’m being tortured—a sinus infection is causing my immune system to attack my brain, triggering sudden and severe mental illness. This is just another evening in the life of someone with PANS/PANDAS who’s having a flare…

The only way to describe the torment I feel in these moments of a severe flare is that it’s like someone has jabbed a knife into my brain, but the pain is mental instead of physical. It’s like fingernails scraping against a chalkboard, and the chalkboard is my soul being whittled away. It’s like a bomb going off inside my mind, scattering my thoughts and setting my brain on fire. I’m no longer present, but I’m aware enough to not be spared the grief of losing myself. It’s mental agony so intense that, in those hours, I’d rather die than continue to endure it indefinitely.

Shockingly, just a few days before, I wasn’t unlike any other college senior—I was happy, full of life, a bit stressed from midterms, yet looking forward to all that was in store for me. Killing myself was not something on my agenda. But then, I caught a cold, and I soon noticed myself becoming forgetful and struggling to think clearly. A few days later, I started refusing food out of fear (not from a lack of appetite). Then, I suddenly began hearing looping thoughts telling me that I wanted—and needed—to die. The most basic tasks were impossible—simply putting my shoes on was mentally overwhelming. I didn’t care about anything and was completely disengaged with life.  Every few hours, I’d suddenly become gripped with a wave of terror for no reason, and I’d start crying uncontrollably because of the severity of the mental pain.

Within a week’s time, I’d lost my mind.

My parents had come to stay with me for fall break, believing they would bring me home for the rest of the semester. The usual high-dose steroid regimen I take for flares had failed miserably—even a high-dose Solumedrol IV drip did nothing. However, one night, in a last-ditch effort to rescue me from the brink of insanity, we pulled out what was left of an old Azithromycin prescription, and I started taking it (with my doctors’ approval). Sometimes, if steroids don’t help PANS symptoms, it’s a good indication there’s an unresolved infection. I was already on penicillin, but plenty of bacteria can’t be killed by it.

With three days of Azithromycin, I felt no change—though my parents claimed I was starting to look a little less tormented. And then, one day, I started doing homework. Then I ate real meals. Before long, I felt engaged with the world again. By the fifth day, it was as if the whole incident had never happened; I was 100% back to where I was before.

People often ask me what it’s like to have PANS—to survive the mental anguish of flares and then in the good times, to live with the knowledge that it could all recur any day. But the truth is that, to me, there’s nothing like losing, and subsequently, finding your mind again to make you appreciate the goodness of all the little things in life that so many of us take for granted. When I have a bad flare like this one, PANS makes me want to die, because it turns my brain against me. On all the other days, PANS makes me want to live as fully as possible, because I know tomorrow is so uncertain, and I want to enjoy all the good things in my life while I can.

Living with PANS has never been easy—in fact, it often feels impossible, but now that this flare is over, I’m grateful to be alive and well and back in class, and I’m grateful for Azithromycin.  And of course, I’m grateful for parents and doctors who don’t give up on helping me live even when my brain tricks me into wishing that they would.

Recovery Is Possible!

Sometimes just when you think it's hopeless, you get better!

Sometimes just when you think it’s hopeless, you get better!

Okay, I’m keeping it shorter this week, because I’m doing so well that I’ve been extremely busy! As I’ve said in the past, the better I’m doing, the less I tend to post and tweet, because I’m away from the blog living my life.

Anyway, I just wanted to give some hope to those of you out there waiting for your PANS treatments to work, wondering when or if they’ll ever kick in. Everyone’s path is different, but yes, recovery from PANS is possible.

Six weeks after my third high-dose IVIG, there’s no comparing where I am now to where I was in July. I mean, I was a ghost in my own life at that point—I went through my days incapable of doing much of anything. Nothing interested me, and everything was too overwhelming. I’d lost so much weight from restricting my food that I was about to end up in the hospital. My POTS was to the point that I could almost pass out simply from standing up. Sometimes, I started hyperventilating for no apparent reason. I often said nonsense because I couldn’t remember words when I spoke.

Suffice it to say that life was beyond crappy at that point—so much so that I’d lost the ability to understand how ill I was.

But where am I today? Well, I’m living on my own, doing college part-time, working part-time, and getting back my life. I’ve regained all the weight I lost, and now I’m strong enough to exercise again—I even ran five miles last weekend! If I have POTS now, I can’t tell. I’m doing so well in every way that I’ve been socializing more than ever before, and I’m sort of seeing someone… Sort of.

Yet as great as all of this is, I’m definitely not out of the woods yet. I still struggle with some executive functions like concentration and planning, and it’s still very much a fight to not let the anorexia thoughts control me. Plus, my handwriting may be the worst ever; unless I write extremely slowly and focus intently, I often can’t write a single word without omitting or reversing letters—and then I don’t know how to fix the spelling. As for my POTS, I continue to drink four liters of water every day and take in at least 5000 mg of sodium, so for all I know, I’d get symptoms again if I reverted to “normal” hydration and salt intake.

Nevertheless, although this IVIG hasn’t fixed everything yet and may or may not have cured my POTS, I remain optimistic that I’m continuing to heal. And I’m so grateful and amazed to have come as far as I have in a few weeks. However, I’m not ready to think a whole lot about the future or make plans, because there’s always that fear that this IVIG will stop working, just as my first one did.  But you know what?  Even after that first relapse, I eventually recovered, despite the setback.

I can’t afford to dwell on my fears. If there’s anything I’ve learned from having PANS, it’s that you have to live in each moment, appreciating all of the good things as they come. Although it’s in one way a curse to know I could wake up tomorrow and lose my very self, knowing this has helped me make the most out of every day and every hour of good health. So even if I still have some challenges, I’m just going to keep enjoying all of these latest victories, keep living, and keep remembering that the hard times don’t last forever—recovery from PANS is possible.

The One Thing I Hate More Than Therapy

Some college kids stockpile liquors, I stockpile nutrition supplements!

Some college kids stockpile liquors, but I stockpile nutrition supplements!

At 93 pounds, I was so miserable and malnourished that I didn’t even know how ill I was. At the time, when I found myself sitting in an infusion chair receiving my third IVIG, I silently wondered to myself what I was doing there. How could I have PANDAS if I wasn’t “that sick”? Why was I getting such a heavy-handed treatment? But with my weight nearing the so-called “starvation” range, many of my organs weren’t working properly anymore. My psychiatrist warned that I’d be in the hospital soon.

Three weeks later, I now realize IVIG probably saved my life. Thanks to the IVIG and accompanying steroids, my food-related fears were 75% gone within the first few days after treatment, and they’ve continued to die down. Unfortunately, the damage to my body was already done. Even though I was having less mental torment related to food, I still had to repair my malnourished body and regain at least seventeen pounds. But how?

While there are standards and scientific studies on recovering from Anorexia Nervosa, there’s little in the literature on recovering from PANDAS-related anorexia, so my doctors, my family, and I have found ourselves in uncharted territory, trying to figure out how best to treat me. How much of the anorexia treatment protocol applies to someone who never had body-image issues? Should I be forbidden to know my weight while recovering? Should I, too, be prevented from exercise for six months, even though I never exercised compulsively?

At the moment, the consensus is that I not only have to do all of my usual immune-system treatments for PANS, but I have to follow many of the standard treatments for Anorexia Nervosa. For example, I see a nutritionist every week and send her lists of everything I eat. I have weekly weigh-ins without being told the number. I do therapy with the psychiatrist, who also oversees the medical aspects of recovery. And I’ll soon participate in an eating disorder support group. The hope is that if I have a PANS flare that compels me to restrict again, therapy will give me more tools to fight back while I wait for medical treatments to kick in. Plus, regardless of my mental state, my body is damaged, and I need the professional help of a nutritionist to be sure my eating is conducive to healing.

However, now that I’m feeling so much better both mentally and physically, all of this therapy seems excessive… Actually, to be honest, I hate all of my anorexia treatments, and I’ve been doing my best to convince my parents and my team that I don’t need so much help.

In many ways, this feels like a repeat of my sentiments towards my weekly Cognitive-Behavioral Therapy sessions for OCD when I was seventeen. I knew I needed to go to them, but I abhorred every minute because I felt so embarrassed discussing the obsessions I’d always kept to myself.  At home, I often got into heated arguments with my parents about why I shouldn’t have the next appointment, I kept saying I was “just fine,” and I threatened to stop attending when I turned eighteen. But I stuck with it because the one thing I hated more than therapy was how my illness had ruined my life.

Similarly, now, I despise every trip to the nutritionist, every measurement on the scale, every mention of target BMI’s, every entry in my food diary. I want to block out that whole torturous, food-obsessed chapter of my life and forget it ever happened, but therapy brings to light the havoc anorexia wreaked upon my body and my life.  I hate that my doctors apparently think I can’t even be trusted to feed myself.  I hate the regimented meal-planning that therapy brings.  I hate how much of my day I spend working on recovery.  I hate that I feel like I’m in puberty all over again, because my body is starting to look different and feel strange (and I’m waiting for my period to come, just like a preteen).

But you know what? As much as I hate being treated for anorexia, I hate how life was at 93 pounds even more—I was so tormented and hemmed in by my obsessions and compulsions about food that I couldn’t see I was no longer living. If doing therapy on top of my medical treatments for PANS means giving me the best chance at never going back to that dark place, then so be it.

When I was discharged from weekly OCD therapy three years ago, I was indescribably grateful for the support my family and therapists had given me towards regaining my life. I discovered a freedom that I never dreamed was possible, because my family had pushed me to go to therapy. In the same way, as much as I don’t like to admit it now, I think I’ll look back someday and be grateful that my parents and doctors made me get treated for anorexia.

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.

A Ghost in My Own Life

Ghost

With this latest relapse, I’ve been living as a ghost in my own life.

In a single day, I went from eagerly and excitedly whittling away at homework for my summer classes, to crying at the thought of writing a single paragraph of a paper. I went from enjoying meals and coffees with my friends, to being terrified of any group of people and not eating lunch at all. I went from being praised at school for contributions I made in my department, to wanting absolutely nothing to do with my chosen field.

And over a couple months, I went from a healthy 110 pounds to a dangerous 96 pounds because of my eating disorder.

To put one more rotten cherry on top of the melting sundae that was my sad state, I’ve been too sick to run. Running used to be the one thing that could make me feel better no matter how depressed I was, but now, I haven’t even had that.

Because of all this, this week, my family and I once again found ourselves in the waiting room of my PANDAS neurologist. I’d hoped that my one-year follow-up would be a happy visit when we would celebrate everything I accomplished this year, but now, we were almost as desperate as our first appointment two years ago. And I was even four pounds lighter than I was in 2014.

I knew my doctor would be concerned about my fourteen-pound weight loss, but I wasn’t prepared for her reaction to other symptoms. After I shared details about the last couple months, she looked at me and said, “I’m going to have a heart attack because you haven’t seen a cardiologist,” and immediately called the cardiology department at my local hospital to get an appointment.

Why such concern? My neurologist suspects that the flu-like illness I had three months ago was the Strep-triggered Rheumatic Fever, which often damages the heart. Indeed, I was diagnosed with post-viral pericarditis in May—an inflammation of the sack around my heart, so her suspicions are somewhat warranted. Although a recent EKG came back normal, I have yet to regain my strength. Furthermore, Rheumatic Fever can cause extreme fatigue and weight loss, which I’m experiencing.

“What about the anorexia?” my dad asked.
“She’s going to need more treatment. Some kids need three IVIG’s… Actually, this is bad enough for plasmapheresis,” my doctor told us.

I could’ve cried when I heard this. I didn’t realize how serious my eating disorder had become and that being malnourished could also possibly damage my heart. I knew I was miserable, but I didn’t know I was in bad enough shape to warrant IVIG or plasmapheresis. In that moment, I felt like surely none of this was happening to me—perhaps it was all just a nightmare. Perhaps I was only a ghost observing someone else’s life. But I was wide awake and in my own body.

So I have my third IVIG scheduled in a few weeks, and I’ll be seeing a cardiologist today (Tuesday). My doctor thinks it’s unlikely that my heart has been permanently damaged, but the possibility of Rheumatic Heart Disease is nothing to mess around with. Maybe I will at least have an answer as to why I’ve been so dizzy and exhausted and unable to run…

There is another ray of hope, too: I was switched from Azithromycin to penicillin, and so far, my mood seems to be brightening every day. I’ve even started eating an appropriate amount of food (though I still obsess and count calories in an unhealthy way), I’ve resumed my hobbies, and I’ve been able to do some homework. If the improvements continue, I won’t be getting IVIG.

It’s been an unbelievably awful few weeks, but I’m so determined to beat PANS into total submission one more time. I’m holding out hope that the penicillin will continue to work its mysterious healing and that I won’t ever need more IVIG. I’m choosing to believe that slowly, but surely, I will keep coming back to life in the flesh, never again to haunt myself like a ghost.

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.

Over these months, I’ve tried a variety of antibiotics, including Augmentin XR and Cefdinir, but it was switching to Azithromycin in October that I believe was the final blow to my illness. The few mild symptoms that remain have little effect on my life.

Yet some critics might say that my taking antibiotics for twenty months is reckless—that I’m contributing to antibiotic resistance and an inevitable super-bug apocalypse. But these are the same doctors who will give a six-year-old anti-psychotics without investigating infectious triggers. So who’s the reckless one: the doctor who loads up a kindergartener on Abilify without running diagnostic tests, or the doctor who’s prescribing a year of Azithromycin, knowing it will keep me sane and healthy? Is it reckless to properly treat the underlying cause of a debilitating and potentially life-threatening illness?

Nevertheless, some skeptics argue that antibiotics merely have a placebo effect—that people are seeing a relationship between symptoms and antibiotics that doesn’t exist. But anyone who has PANDAS or who’s lived with a PANDAS child for any length of time may have observed the pattern of improvement with antibiotics over and over again—and knows it would be unscientific to claim these observations as mere coincidence.

But what about antibiotic resistance? What about the fact that antibiotics kill off beneficial gut bacteria? What about yeast infections? If PANDAS is just “sudden-onset pediatric OCD,” why not give kids an SSRI and send them to therapy? Why not treat the tics with some anti-psychotics? Surely long-term antibiotics are unhealthy, right?

If PANS could be effectively treated with therapy and anti-psychotics and SSRI’s alone, the PANS community would settle down and crowd into the offices of mainstream doctors, the kids would get better, and the families would go on thriving. But this isn’t the case. Treating infections is the most crucial part of recovering from PANS, because the infections are what trigger the symptoms in the first place. Any ongoing infections will continually provoke the immune system to create the antibodies that attack the brain and lead to symptoms. Thus, the infections need to be dealt with for healing to occur, and they need to be prevented for it to continue.

As for antibiotic resistance, more than half the antibiotics used in America are for agriculture. We should be worried about all the livestock being given antibiotics for non-therapeutic purposes—not kids with PANDAS who take amoxicillan to stop bad antibodies from attacking their brains. Some people with PANDAS are literally dying. I would argue that they need antibiotics as much as someone with life-threatening bacterial pneumonia, for which no one ever questions the use of antibiotics.

But surely after twenty months of antibiotics, my gut flora is a wreck, isn’t it? Seeing as I’ve never had a yeast infection or diarrhea or nausea during this whole time, I’d say I’m just fine. In fact, I had stomach issues before I started antibiotics that have since resolved. I’m not alone in this—I’ve heard similar reports from many other families. (All this being said, yes, I do take a probiotic everyday—with 30 billion live cultures.)

Antibiotics are a critical part in the healing process of PANS. For some, they may be the only treatment needed. For others, they’re one of many therapies that work together.

If you’re just starting on the road of antibiotic treatment, my best advice would be to realize that it can take time for PANDAS symptoms to die down. In some cases, you get worse before you get better.

Antibiotics are still drugs with risks, and using them shouldn’t be taken lightly. However, with PANDAS, the bigger risk is often to leave the trigger of the disease untreated.

One Wrong Step and…

With PANS, you never know what step might pull you into the ground...

With PANS, you never know what step might pull you into the ground…

I know I said I’d start a series on the different treatments I’ve tried, but I’m pausing to tell you why I haven’t been able to post in several weeks…

I caught some terrible virus and have been having symptoms again.  As a result, I got behind in school, so I’ve had to use all my time to get on top of things again.

As you know, when someone with PANDAS gets sick, it never just means sitting in bed and sipping on chicken soup for a few days. In the past, getting sick could literally make me lose my mind. For example, what should have been a mild case of mono during my freshman year of college turned my immune system against my brain, leaving me suicidal, anorexic, and unable to walk.

So you can imagine my fear when I woke up a couple weeks ago with my whole body in pain and a pounding headache. I was so weak that I could barely sit up. Was this the beginning of the end, all over again?

While I didn’t go crazy, I’ve certainly had a rough time as a result of this most recent illness. For a week, I had a ten-second attention span, making it take four times as long to get any of my homework done. I suddenly got it into my head that I needed to start restricting again, and I’ve lost a few pounds. When I was well enough to go back to class, I continually wrote letters out of order when taking notes and struggled to figure out how to fix my spelling errors. Things were making me cry for no reason. One night, I couldn’t sleep because I was afraid that if I did, my heart might stop and then I’d die.

In the midst of this, I had a dream that I was walking on a road with a friend when out of nowhere, I dropped into a mud sinkhole and became submerged up to my shoulders. My friend had stepped in the same place and not fallen in, but what should have been a puddle nearly drowned me.

“This is what happens when I get sick,” I explained. “I need you to pull me out.”

Just as she reached out her arm, I woke up, my heart racing.

I haven’t been able to stop thinking about the dream, because it’s true for pretty much everyone with PANS. During times of remission, we walk around the world just like everyone else, minding our own business, but then, when the wrong virus or infection comes along, we’re swallowed up by the ground beneath our feet. Most people can emerge from a cold with nothing but a runny nose that lasts a few days, while the same virus could literally drive someone with PANS into insanity. And the worst part is that when you’re busy living your life, you know that any of your steps could be the one that sucks you into the ground.

But thankfully, this time, my friend Prednisone once again pulled me out, and now I’m not having symptoms anymore. I believe there’s a reason why, in my dream, the mud only went up to my shoulders instead of totally burying me—nowadays, my flares never completely take away who I am in the way they used to. As bad as this latest one sounds, it’s nothing compared to how my flares used to be. So while it’s been discouraging to have had a recurrence of symptoms, I’m reminding myself that the mud was unable to swallow me up to my head like it once did.

So readers, I’m fine now, and I’ve finally gotten caught up with school. Next week, I’ll actually be starting my series on treatments, beginning with a post on antibiotics, so stay tuned!

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.

PANS: Certainty of Uncertainty

To me, one of the most difficult parts of recovering from PANS is how, just when you think you’re done having symptoms, your life can change again in a day. Sometimes, I feel like with PANS, the only certainty you have is the uncertainty of the course of the illness.

Last week, I’d been doing great in every way imaginable, but on Monday, I started having tics again. At first, I didn’t think much of it because, sometimes, I have a few here or there, and then they go away. Unfortunately, this time they were the most pronounced they’d been since the summer, and I was even having vocalizations again.

By the next day, I was constantly sniffing and grunting and making all sorts of strange noises and doing repetitive movements with my head and arms. At times, I could barely finish a sentence without being interrupted by a vocal tic.

But PANS had even worse things coming to me…

The day after that, while walking home to my apartment (and sniffing all the way there), I felt my legs starting to get heavy. I tried to keep walking normally, but they would stop responding to my brain. All of a sudden, my knees were buckling every few steps, just like they used to do all the time when I was at my worst.

Over two days, I’d gone from being 100% functional to being physically disabled and having severe tics. Why was all of this happening to me? Was this the beginning of a relapse? Would I be spending this spring break getting another IVIG, just like last year?

Most of the time now, I don’t dwell on my illness or feel sorry for myself. But this week, it hit me all over again just how unfair it is to have a disease that can leave you handicapped without warning. No one deserves to live with this possibility hanging over their head all the time.

Over the last two years of recovery, I’ve often been in denial of my illness. I used to blame myself for every flare and every tic and every obsession and every treatment I needed to have. I never told anyone, but I always wondered if maybe, there was somehow a part of me that didn’t want to get better, and that this part of me was making me continue to need treatment. I felt bad for putting my family through what they went through because, somehow, it was my fault.

Deep down, I always knew that I didn’t want to be stuck with my illness, but by blaming myself anyway, I could claim some control over the disease. If I’d been responsible for preventing my recovery, then, at any point, I could’ve decided to stop having symptoms. I didn’t have to deal with the uncertainty of having no control—or with the truth that I was doing everything in my power to get better, yet I was still sick.

But there’s nothing like involuntary movements and partial paralysis attacks to prove to you that you have no control over PANS—and that even if you felt certain you were well, you can’t be certain you won’t have symptoms again.  This week, I was faced with the reality that my wishes to get better (or my false suspicions of wishing not to) had no bearing on my recovery.

After a few days of being disabled and utterly discouraged, my tics started dying away, and I was able to walk normally. I do consider this a good sign, since I improved without any treatment. However, I’ve since developed new vocal tics (though they only happen occasionally), and I’ve had a couple nights when I could barely walk again. But interestingly and fortunately, I’ve had no cognitive or psychiatric issues, so I’m counting my blessings. For now, I’m just waiting all of this out to see if it goes away.

Still, I’d be lying if I said I wasn’t worried about what these reemerging symptoms may or may not mean.

Nevertheless, I’m slowly learning to accept the uncertainty of PANS—and my lack of control over it. I’m okay with not knowing what might happen next, because, through everything, I’ve always had an inexplicable conviction that everything will turn out right in the end. I struggle with my faith sometimes and am not always certain of what I believe, but this one conviction may be among the closest things I feel to certainty… Besides uncertainty.

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.

Can Hamburgers Stop Flares?

Even in a flare, this silly hamburger label made me laugh!

Even in a flare, this silly hamburger label made me laugh!

I’ll be the first one to admit that there’s pretty much nothing good about having flares or having to take all of the antibiotics and other medications that I take. But, sometimes, in the craziness of it all, I just have to laugh at my circumstances—especially when there’s a hamburger on my bottle of Cefdinir, which I only acquired because of a flare…

After five days of an increased Prednisone dose the other week, I was starting to come out of the mud of depression and brain fog. I almost thought I was okay. My psychiatrist had me double my Wellbutrin to help what was left of the depression, and I was almost hoping that would be enough.

But then the PANDA bear grabbed me again.

When my tics start up, I feel like someone is taking control of my body. I feel like there’s some outside force enveloping me, forcing me to do the movements or make the noises. Sometimes, I can almost feel it on my skin, and that’s rather frightening.

It had been months since I’d had that sensation and since I’d ticked like I did one night this week. Clearly, I’d been exposed to something that my body was reacting to.

A couple of my doctors were highly suspicious that I’d caught Mycoplasma (walking Pneumonia), since it doesn’t respond to the Augmentin I take daily, so I got an Azithromycin Z-pack to treat it. I’d been holding off on starting it for a bit, hoping I could do without it, but when the tics came back and I wasn’t focusing again, I knew I had to do something.

I’m one of those kids who’s usually been classified as a “non-responder” to antibiotics, but given how bad my tics were and the lingering depression and anxiety, I figured it was worth a shot. Plus, I’d been having this weird shortness of breath and a cough, so it wasn’t totally crazy to suspect pneumonia.

To my astonishment, the day after my first dose of Azithromycin, something strange happened: I realized that I wasn’t ticking at all! By the second day, the cloud of despair that I get during flares was also gone. And I was even being productive!

Now that I’ve finished the Z-Pack, I’m doing umbelieveably well taking the hamburger Cefdinir instead of Augmentin XR, and Cefdinir kills Serratia marcescens. (For those of you who are new to my blog, that bacteria once infected my tonsils and probably caused a number of flares.) But since I’d been so depressed for several weeks recently, I hadn’t been cleaning my shower, and of course, there was a huge colony of Serratia growing in one of the corners. Yuck! I’m sure that didn’t help…

I'm 99% sure this was Serratia in my shower...

I’m 99% sure this pink blob in my shower was Serratia

But now, I’ve had someone else clean out the shower with Lysol (to limit my exposure), and I’ve been taking Cefdinir, and I’m doing wonderfully. In fact, I’ve had a few days of feeling 100% and completely symptom-free this week. I don’t know if it was the Azithromycin or the Cefdinir or the Serratia-free shower or all of the above, but no matter what it is, I’m glad for the relief.

Yet I never know how many good days I’m going to have before I flare, so I’m trying to savor and make the most of these good days while I can. I have a bad feeling I’m going to flare again, but I’d like to think it’s just an unfounded fear… Whatever the case, I’ll just keep living as much as I can in the middle of fighting off this crazy disease.

PANDAS is so difficult to go through, but I’ll just keep trying to laugh about the little things—like that silly hamburger—to make the journey more tolerable as I work to find the best treatments.

PANDAS, Described in 1 Word

"Sometimes I just get terrified." 17-year-old me unknowingly describing PANDAS.

“Sometimes I just get terrified,” said 17-year-old me at the beginning of this exacerbation.

To be faced with PANDAS is to have a lot of debilitating symptoms and feelings all at once that, in essence, make you lose who you are. There is much to say about what it feels like to have PANDAS, but if I had to sum up my experience in one word, I would say…

Terror.

Fear has been a reality of my existence ever since my onset at age eleven.  Sometimes, I’ve had specific fears, and other times it was general anxiety. There were times when I felt like I was afraid of everything, as I described so poignantly in a journal from 2009 when I was fourteen:

Worry Is Taking Over My Life-small

I feel like worry is taking over my life… I worry a lot about if I’ll die young. I worry about environmental toxins (like lead). I worry about hearing damage… I worry about getting sick. I worry about what other people think about me. I worry about house fires.

Over time, my fears would slowly fade away (presumably after I fought off whatever infection had caused each flare). But whenever I least expected it, the terror would come back out of nowhere.

When I was seventeen, I suddenly became convinced all over again that I’d committed an unforgivable sin. From then on, everything revolved around making sure I didn’t do something unforgivable that would send me to hell—but instead my OCD become a hell on earth.

I was a caged tiger after that night. I would pace around the house each evening, hoping that somehow it would help me escape the all-consuming terror that trapped me inside myself. The OCD told me I was about to think or say or do something unforgivable, and my mind was constantly full of intrusive blasphemous thoughts that I was sure could damn me.

In order to divert my mind from the horrible terror and despair surrounding the thoughts, I began to write for as many as twelve hours a-day, skipping meals and not leaving the room, to the point where my psychologist became concerned I was in my first manic episode.

The worst thing about PANDAS terror is that it is all in your brain, so there’s no way to make it stop, other than to get treatment or distract yourself. This disease can make you afraid of everything outside of you and afraid of the mind inside of you. It made me do anything—even things I knew made no sense—just to find some relief. Sometimes, those things were OCD compulsions. Other times, it was slamming myself into a wall or trying to jump out a window, just because I felt like I had to.

Sometimes, I used to impulsively run out of the house, because I hoped that maybe, somehow, getting out the door would get me out of the anguishing terror. It’s like having an allergic reaction and itching all over, and all you want to do is get out of your skin to make the feeling stop…  But you can’t.

The need to get out of your mind in a PANDAS flare of terror is one reason this disease can be life-threatening. This is why I used to scream things like, “I want to die!” and why I couldn’t see how life could ever get better, since I was stuck with a mind that terrified me and was no longer my own.

But trust me, it does get better. I haven’t truly experienced the fullness of terror since getting my tonsils out this summer, and I’ve heard so many other recovery stories.

These days, what I live with isn’t terror so much as a constant, mild anxiety. While the most recent Prednisone burst for my last flare quieted most of my symptoms and got me back to being functional, it didn’t get rid of that all-too-familiar feeling of worry.  Nowadays, I walk around feeling like something must be terribly wrong, but I have no idea what it is.

My anxiety is like the feeling you get when you’re lying in bed at night almost ready to sleep, and you suddenly realize that you didn’t do something important that you needed to do that day. It’s the feeling when you first realize you’ve lost your phone or your wallet, but you have no idea where it could be. It’s the feeling of dread when you’re about to go meet with the principal at school because you acted out. But unlike those situations, the only thing wrong is my PANDAS—not something external.

I’m used to the anxiety by now, and it’s no longer bad enough to make me want to run away from myself. While it’s certainly still disruptive, I’m able to go to class and get my work done anyway. I’m so accustomed to it that I almost don’t notice it, since I don’t know what life is like without being a little afraid. Besides, my non-PANDAS self knows the anxiety is brain inflammation—not based in reality.

Even so, my team of doctors and I are not satisfied with me feeling that something must be terribly wrong—not to mention the tics that have returned. We’ll be checking titers and Ig levels and possibly changing antibiotics, so I’m doing my best to look at the coming weeks with hope—not dread.

OCD Week: Unlocking The Box

IMG_3818 - Version 2-small

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.

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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.

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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.

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.

So I decided to write a letter to my pre-IVIG self. Everyone has a different recovery road. Some people heal in less time than I’ve taken, and others take longer. This is what I would’ve found helpful, but I’d love to know what my fellow PANS warriors wish they’d known before treatment, too…

Dear Me,

You’re in for a crazy ride. You’re sick right now (and don’t even realize how bad it is), but you’re going to get better. You’re going to return to yourself. There will come a day when you are tormented no more. There will come a day when you enjoy your life again. There will come a day when you can spend time with your friends. There will come a day when you are able to eat without getting nauseous and anxious. There will come a day when you don’t have involuntary movements during every waking moment.

But it’s going to be a hard journey that will require you to fight harder than you think you can fight. Along the way, you will have awful flares. You will have times when you are terrified of yourself again. You will have times when you want to give up. You will have times when you will be mad at your parents for wanting to save you. But you’re stronger than you’d ever dare to believe, and you’re going to come out of this more alive than you were before you got ill.

During those times when you seem to be getting worse or going in circles, remember that there isn’t a straight path to recovery. Sometimes, you will take two steps forward and one step back. Other times, you will take two steps back and one step forward. IVIG is the beginning of recovery—not the end. Unfortunately, recovery doesn’t happen overnight like the onset of PANS—it often happens so slowly that you won’t notice you’re getting much better.

Still, even if you know you’re moving forward and that PANS isn’t a permanent illness, there will be moments when you’ll be sure you can’t go on another day. When you feel like that, take some ibuprofen and remember how far you’ve already come. If you’ve made it this far, you can make it the rest of the way to healing.

It will be a long road, and you’re going to feel sad and angry and confused sometimes. Lean on the people who care about you, and don’t look down on yourself for fighting this disease. It isn’t your fault. Give yourself permission to take it easy, and don’t feel bad about it. You are battling a serious illness, and your body needs rest in order to heal.

There will be a lot of days when you don’t feel like yourself, but you are still in there. You are ill, but you are not broken or any less of a person for having this disease. Don’t give up. Better days ahead.

“You’re Better.”

It's a new day!

Everything is different now, like a new day

 “You’re better.”

Those are two words I never thought I’d hear from my doctor. But this week, I finally did.

As my mom and I made the trip to my doctor’s office this week, I couldn’t help but feel that things were different this time—and most of all, that I was different. I was more present. I was more aware. I was bright-eyed again. I was finally myself.

This time, unlike my last visit in May, I opened the office doors myself, grabbing the handles without flinching. I pushed the elevator buttons. I sat in the waiting room chairs without thinking about Lysoling myself when I got home. I realized that contamination OCD was finally letting me go.

As I waited and heard the beeps from the IVIG pumps of other patients in the rooms down the hall, I figured out that it was a year ago to the day that I was sitting in those same infusion chairs for the first time.

But one year, a tonsillectomy, and an additional IVIG later, I’d returned—literally and mentally.

My transformation over the last year has been nothing short of miraculous. Last summer, I could hardly walk, I couldn’t eat much, I couldn’t stay awake, and I could never be still because I constantly had involuntary movements. In those days, I would look in the mirror and be frightened, because the person staring back at me wasn’t me—it was a burdened soul whose face showed the deepest torment and despair. It was someone who only looked like me, who carried the weight of the world in a malnourished body.

But when it was my turn to see the doctor this week, after I reported on my lack of symptoms and the strange tonsil infection that was no more, and after she saw that the dark cloud that once enveloped me was gone, I received the pronouncement I’ve dreamed of for the last year:

“You’re better.”

I’ve known I was 95% symptom-free for a few weeks, but to have a doctor say so made the elation and amazement finally hit me. Better… In remission… Done with this terrible disease… How can it be for real?

As for the other 5%, I still look forward to getting it back. I’ve been having trouble with speech and word retrieval lately. Sometimes, sentences come out of my mouth as nonsense syllables with the rhythm and tone of normal speech, and the English words I do say aren’t always the right ones. Sometimes, I have a hard time comprehending what I read or what people say to me.  Sometimes, I still get tics, and once in a blue moon, I fall down when I walk from my legs giving out.

“Executive function problems and movement issues are often the last things to leave,” my neurologist said. But the fact that I have so few other symptoms and have improved so dramatically after tonsillectomy suggests that it’s only a matter of time before I get to 100%.

If all goes as planned, I won’t be going back for any more follow-ups for another year, and I’ll be continuing on antibiotics, Plaquenil (an anti-inflammatory), Wellbutrin, and the same vitamins/supplements at least through this next year. But I’m tapering off Prednisone for good now!

It’s hard to believe that I’m 95% symptom-free, in remission, and not expected to relapse. I’m shocked to think that my nine-year nightmare is finally coming to an end.  Most of all, I’m so relieved and grateful.

To anyone out there who thinks they’ll never recover from PANS… Keep fighting, and you’ll get there, no matter how hopeless it seems right now. Don’t give up. Someday, you, too, will hear those powerful words: You’re better.

OCD No More?

Leaving a switch on can be bad news for my OCD...

Leaving a switch on can be bad news for my OCD…

Ever since my tonsillectomy, I’ve noticed my OCD dying down significantly. I’ve found myself touching cabinet knobs in the kitchen that I haven’t been able to touch in over a year. I’m not checking my room for people trying to hurt me. I’m not washing my hands all the time.

I’ve been in CBT all summer, but the improvement I’ve seen seemed to happen much more suddenly and with much less effort than what I normally get from using therapy techniques alone. It was as if maybe, I had less brain inflammation, because I no longer had an infection in my tonsils.

But one evening, I was in the car with my parents heading to church, and out of nowhere, the OCD thoughts came roaring back:

You didn’t turn off the stereo, so now the whole house is going to burn down while you’re gone. You didn’t bring your computer with you in the car, you haven’t backed it up, and now, you’re going to lose five years of work when it burns up.

My heart began to race as I wrung my sweaty hands together in the back seat.

“Hey… I left the stereo on. Do you think that’s okay?” I asked my parents.

“Yes, that’s fine. Nothing will happen,” my mom assured me.

But that wasn’t enough. My brain wanted me to ask again and again, or better yet, go back home and turn everything off.  I wanted some reassurance that my thoughts were lying to me (even though part of me knew it was all ridiculous). But after the months of therapy I’ve been through, I knew that no matter how long I kept asking, I’d never get the certainty I craved.  So I stopped and sat there with the anxiety instead.

It wasn’t easy, though. The anxiety felt like someone was scraping their fingernails against a chalkboard inside my head. It was as if I had to crawl out of my skin, but I couldn’t. OCD is like a little brother that keeps poking you all day long, no matter how many times you ask him to stop.

But like a naughty little brother, if you can learn to ignore him and not react, eventually, he will go away.

To calm my anxiety, I tried some “box breathing:” inhale for five seconds, hold your breath for five seconds, exhale for five seconds, hold your breath for five seconds again, and repeat. I’ve never been a fan of breathing exercises, but this technique actually works for me.

By the time we got to church, I was feeling much better. But of course, I was still waiting for the rest of the flare to come. If my OCD had suddenly spiked, wasn’t I going to lose myself at any moment? Wasn’t I about to start doing the chorea dance again? Wasn’t I about to fall into a deep depression? Not necessarily.

My psychiatrist told me that he expects I’ll always have a tendency toward OCD to a more mild extent, even when I’m cured from PANS. He believes that people with PANS are pre-disposed to OCD, so I shouldn’t expect it to completely go away from IVIG or tonsillectomy or any other medical treatment.

He wasn’t trying to negate that those things help OCD in people with PANS. He was just saying that, like everyone else with OCD, I have to treat it with therapy so that I know how to manage whatever tendencies and learned behaviors may be left when I’m otherwise symptom-free.

I must admit that I was a little discouraged when I heard this, but there’s a bright side if he’s right: just because I have one hour where my OCD acts up a little doesn’t mean I’m “flaring” in the PANDAS sense of the word. Just because my OCD is worse one night doesn’t mean I have to load up on Prednisone and prepare for battle. If I do have some degree of “normal” OCD, then it will simply act up occasionally, especially under stressful circumstances—but OCD can be managed.

Sure enough, the rest of the PANDAS symptoms never came that night. Maybe it was just a “flare” of regular OCD. Maybe it was a very mild PANDAS flare. No one knows. But what I do know is that, aside from that night, my OCD is dramatically better than it was a couple weeks ago.

To me, I think the most important thing for PANDA’s is to treat both the immune response causing the worst of the OCD and to do CBT to deal with the OCD in the meantime—whether it’s purely caused by inflammation or if it’s also something we’ll always be prone to.

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!

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.

Sadly, more often than not, telling a doctor you have PANDAS is just asking to be laughed at and dismissed. Many doctors don’t believe in PANDAS (let alone the newer term PANS) because they’re unaware of the growing research and evidence, and others don’t know enough to take it seriously.

Most doctors, if they believe PANDAS/PANS exists at all, assume it is extremely rare and only presents in a young child as an obvious, overnight onset of OCD. This is certainly the most common presentation, but according to Dr. Swedo, the idea that PANDAS only exists in prepubescent children was an arbitrary distinction for the original study. Still, in the minds of most doctors, to have me, a twenty-year-old, say I have this obscure pediatric disorder is preposterous (never mind that it started before I hit puberty).

While my case being dropped by the first doctor seemed like a bad sign, when I met with the new doctor at my appointment, he knew more about PANDAS than most and actually agreed to do the surgery after I told my story and explained the severity of my symptoms.

So that’s how I found myself last week trustingly lying in an operating room at the same hospital that had failed me so many other times over the years.

This was the hospital that discharged me from the ER last summer without a single test when I suddenly had severe chorea movements. This was the hospital whose neurologists had said PANDAS was “too poorly understood” to be considered as an explanation for my rapid decline. This was the hospital whose psychologists completely missed my severe OCD when I was twelve. Disturbingly, this was also the hospital consistently ranked as one of the best in the nation.

But last week, the hospital redeemed itself to me.

As I waited in the pre-op room, sniffing, grunting, and twitching involuntarily from my latest tics, I actually felt as though everyone not only believed me, but actually wanted to help me. I usually feel like I have to fight for every little bit of care I get, but this time, they were fighting for me. This time, I didn’t have to partially cover up my diagnosis by only saying I have Autoimmune Encephalitis (but not PANS). Everyone knew my full diagnosis, but they were all-the-more eager to help.

My operating room was crowded with residents, interns, and medical school students trying to get a look at this unusual creature—this real, live PANDA bear—because they saw that we exist outside of a “theoretical disease” briefly mentioned in their textbooks. There were whispers of my case in the halls—not because they were mocking my diagnosis as usual, but because they were fascinated. These young doctors genuinely wanted to learn about PANDAS/PANS so that someday, they could perhaps know how to treat their own patients with the disorder.

For the first time, doctors at a regular hospital were giving my illness the attention it deserves—and giving me the treatment I needed.

If there’s one word I felt to describe the day, it would be “hope.” I felt hope because more doctors finally believed in my disease. I felt hope that someday, other PANDA’s from my hometown wouldn’t have to travel to out-of-town specialists for treatment—someday our own “world-class” hospital might treat more of us. Most of all, I felt hope that I had finally found the treatment that would bring me back the rest of the way…

Ever since I came out of surgery, I haven’t had a single tic.  The day before, I’d developed two new vocal tics that got more and more disruptive as the day went on.  I know—tics usually increase with anxiety.  But why have I also found myself suddenly carrying out fewer and fewer compulsions this week—and not getting extremely anxious over not doing them?

As always, there are a lot of variables at work.  Still, I can’t deny that, aside from a sore, gnarly-looking throat and fatigue from leftover anesthesia, I’m feeling great in every other way.  (And I’m not in nearly as much pain as people tried to scare me into thinking I’d be in.)  To me, what happened this week is a good enough reason to keep hoping for continuing progress.

Goodbye, Tonsils

Dairy-free ice cream

I don’t even wanna know how many pints of this I’m about to eat…

With one day left until my surgery now, it’s been an interesting week. For the first time in eleven months, I’ve stopped antibiotics completely, so as not to influence the tonsil and adenoid cultures that will be performed. The doctors also told me to stop all supplements, so my pill cases have been extraordinarily empty these last few days (a much-welcomed sight!). Although I’ve had a slight increase in tics, trouble concentrating, and more trouble falling asleep, I haven’t noticed nearly as much of a difference as I expected.

Strangely, after the flare a couple weeks ago, I’ve been doing quite well. I still have a decent amount of OCD and significant problems with falling asleep, but I barely have any choreiform movements. I’ve been walking around the house expecting that weird, limp feeling in my legs that makes me fall down, but it just doesn’t happen anymore. I’m not even depressed, either.

Naturally, this has me wondering why I’m about to go through all this pain and hassle to get my tonsils out when I seem to be doing okay now. What if I’m actually heading for healing now? What if they culture my tonsils and find there was nothing in them? I’m twenty. I legally don’t have to do what anyone tells me. I can decide to back out of the surgery.

But what if I am about to flare again? What if my tonsils are riddled with strep or another infection?

So I’ve resigned myself to the fact that I don’t really have a choice in getting my tonsils and adenoids out. I have to comply. All of my doctors—including my neurologist and my psychiatrist and obviously the otolaryngologist who is doing the surgery—agree that it needs to be done.

I’m trying to not let myself be nervous, but it’s almost impossible for someone who has existing anxiety issues. My tactic is to not think about it. I comfort myself with the knowledge that I won’t remember the surgery since I’ll be asleep. I try not to let myself think about the idea that the doctors could make a mistake. I try not to worry about having bleeding problems afterwards that send me to the ER (it apparently happens more frequently in adults).

So what about the inevitable pain afterwards?  (I’m warned that it will hurt a lot more since I’m an adult.) Well, that’s why I have narcotics. I didn’t even touch my Percocet when I had my wisdom teeth out a few years ago, though, so I like to think my pain threshold is pretty high. Besides, I’m sure that there is absolutely nothing more painful than my OCD once was. If I got through that, then no sore throat—no matter how miserable—will get me down.

My surgery won’t be until the early afternoon, which unfortunately means I have a whole morning to worry about the procedure. But because I have the whole morning, I decided that I’m going to go for a run. For me, running makes everything better. It also has the added benefit of making me not hungry for at least an hour afterwards (and I have to fast for the surgery), so if I time it right, I’ll have just enough time tomorrow morning to go for a run, get rehydrated, take a shower, gather my things, and then head to the hospital. I’m getting rid of all the extra time I could spend worrying.

Still, it might not be an easy couple of weeks. Even if I do like ice cream, it’s not going to be a fun time. But I’m going to get through it. Who knows? Maybe it will be apparent that I needed the surgery after all. Perhaps saying goodbye to my tonsils will be saying hello to complete healing.

IVIG#2, Two Months Later

Wellbutrin XL: The Latest Addition to My Daily Pile of Meds

Wellbutrin XL: The Latest Addition to the Daily Pile of Meds & Supplements

As my two-month IVIG follow-up approached, I was sure I would have bad news no matter what. It would be bad news if my doctor decided I needed an invasive plasmapheresis treatment. It would be just as bad if she told me we had to “wait and see” if this second IVIG worked, because certain symptoms were still making me miserable.

Well, I didn’t exactly get either piece of news. We made a plan that involved neither option…

In the last few weeks, I’ve realized that my OCD is about to get completely out-of-hand, and I’ve also been slipping back into depression.  And this wasn’t a mild depressive episode—my depression turned me into an unrecognizable lump of a human being, exhausted by even the simplest tasks and unable to enjoy anything at all.

Yet as awful as I’ve been feeling mentally and emotionally, all my other symptoms are disappearing, so the IVIG is starting to work.  Given a few more months, maybe I’ll be completely cured…

Today, I have no sign of a sleep disorder of any kind.  I no longer need Nuvigil to stay awake during the day or any kind of sleep aid to fall asleep at night.  This, on its own, is a miracle, considering that a year ago, my sleepiness was so constant and severe that I was misdiagnosed with Narcolepsy and told I would never get better…

I can go for hours at a time without having any tics or choreiform movements, and when I do have them, they’re hardly noticeable.  It’s quite a transformation from someone who was involuntarily thrashing around violently in the ER eleven months ago.  I do still occasionally have my legs lock up on me when I walk, but I haven’t fallen down in weeks—and I used to fall at least 100+ times per day…

I should also mention that my memory and concentration are coming back, and I’m no longer having that feeling of being completely “out-of-it” or “not there.”  Even though I’m depressed, I have a mental clarity that I didn’t have a few months ago.

If it weren’t for my OCD and depression, I could almost just live with this disease without much complaint now.  But let’s face it—OCD and depression, even if you didn’t have all the other PANS symptoms, can be far more than anyone should have to deal with.

“Have you tried CBT for your OCD?” my neurologist asked.

“I mean, I did eight months of it a couple years ago…”

“I think you need to do it again. Your brain is ready for it now.”

Strangely, I found myself almost feeling happy about the idea of going back to therapy—not because I enjoy it (I actually hate it), but because I’m ready to get rid of my OCD and social anxiety. I was considering going back to therapy before my doctor recommended it, but now that she told me I should do it, I really didn’t have any excuse not to go. I remember how hard ERP therapy was two years ago, but the freedom I gained was so worth it. I know it’s still not going to be easy this time around, but it’s time to send my OCD packing, once and for all.

But what about my depression?

We have a solution—I’m now taking Wellbutrin XL, and after a few days on it, I’ve begun to feel significantly better. I have more energy and don’t feel like I’m dragging myself through each day. I’m actually happy. I’m slowly getting back into the things I used to enjoy.

From what I understood at my appointment, my doctor said that since I no longer have as many antibodies interfering with my brain’s dopamine receptors, my body hasn’t yet re-calibrated to make the right amount of dopamine.  I think she said I don’t have enough dopamine yet, so that’s why I’m depressed.  Our hope is that the Wellbutrin will help re-balance my brain chemistry.

I’m certainly not glad that I need an anti-depressant and have to go back to therapy for my OCD, but I’m glad that things are going to get better. For that matter, I’m glad that so many of my other symptoms are far better than they once were. I’m relieved that, for now, I’m not doing any more IVIG or plasmapheresis.

Who knows? Maybe this really is the beginning of the end…

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!

IVIG #2: I’m Finally Aware

IMG_3170-small

I just finished my second, and hopefully last, IVIG treatment!

Recently, I’d been feeling like I’d made no progress with any of my symptoms after my first IVIG.  But strangely, it was the process of going back for another IVIG that showed me this was simply untrue.

When I had the first IVIG in August, if I got out of the chair to stand up and stretch my legs, I started doing a wild choreiform movement dance. I couldn’t even look at my doctor to talk to her because I was moving so much. I had to hold onto the IV bag pole to keep from falling down when I tried to walk down the hall to the bathroom.

This time, I hardly had any movements, and the ones I did have were barely noticeable to anyone besides me—except for when I took one spill in the hallway…

While my movement disorders have improved significantly, I’d say the main difference between last week and my August IVIG has been that, before my first IVIG, I don’t think I fully understood how serious this disease could be.

In August, I didn’t realize that, if it weren’t for the Prednisone burst that had brought me back a few weeks beforehand, I could’ve starved myself. It didn’t occur to me that if we hadn’t figured out I had PANS, I would’ve been locked up in a psych ward with constant monitoring so I wouldn’t hurt myself. I didn’t grasp that I needed IVIG to avoid a lifetime of mental illness, disability, and unimaginable suffering.

But now I get it.  Sometimes, it’s too much to process.  I simply cannot bear to think about what would’ve happened to me without treatment.  I nearly lost everything…

During the IVIG treatment this week, I was also well enough to understand how bad things still are—although it’s a good sign that I’m able to recognize this. I know that my general and social anxiety and OCD have been incapacitating, all of my executive functioning abilities are very poor, and everyday tasks are sometimes impossible.

But even if some of these symptoms aren’t much better than they were in August, my perception is much improved. It’s like someone has finally given me a pair of glasses for my mind, and I can finally see what I’ve been missing for so long. While it’s painful to know there’s so much I couldn’t see, it’s comforting to know I’m coming back in some ways.

Unfortunately, being more aware means I’m also able to worry more.  I worry because, if this IVIG doesn’t bring me back to 100%, I’ll be spending a month of my summer in isolation following a five-day plasmapheresis treatment in the hospital. If that fails, I’ll be going through Rituximab infusions—a form of chemotherapy.

I had big plans to take summer classes and get a job, but how can I plan anything when I have no idea whether I’ll be able to leave my house or not this summer? All I want is to not suffer so much—especially since I’m so conscious of my suffering now. I just want to be allowed to be myself.

Sometimes, I cannot sleep at night because I’m afraid I’ll never get back to who I am. Or even worse, I worry that I won’t know that I’m not completely better, and then I won’t get the treatment I need, and then I’ll slip into a relapse just as I’ve finally returned to a good life—and then I’ll go through this whole thing all over again.

But I don’t want to worry—I want to enjoy the improvements I’ve already seen after this second IVIG: my OCD almost completely disappeared overnight, my memory is much better, I’ve been able to contribute to discussions in my classes this week, and I’m even enjoying things again. This is wonderful, almost miraculous, news. Oh, that this trend would continue…

Bring Me Back

Plane

As spring break approached, I did everything I could to avoid answering that dreaded question: “What are you doing over break?”

“Oh, I’m just taking a short trip to the city and then going home and resting,” I told most people.

But the whole truth is that I’ll be sitting in my doctor’s office for two days hooked up to an IV to get a bunch of people’s antibodies poured into my body. The truth is that I desperately need this treatment so that my own bad antibodies will stop attacking my brain. The truth is that I’m going for my second round of IVIG to hopefully wipe out this disease once and for all.

As I’ve listened to classmates discussing their cruises, beach outings, road trips, or even their plans to remain at school, I’ve found myself feeling resentful.  It isn’t the fact that I don’t get to spend the week on a beach with my friends—it’s the fact that I don’t have the freedom to choose not to do so.  My symptoms are severe enough that the only reasonable spring break for me is to get more treatment. What can I do? I have to go back for IVIG.

IVIG round 2––I'm partying so hard over spring break!

This is how I’m partying over spring break…

With so many emotions—hope, fear, anxiety, and more—I stepped into a cab after my last Friday class and headed to the airport to go home.  But it wasn’t that easy: my mom had to call the cab for me, because my social anxiety has been so bad lately.

Getting through the airport to go home was even more difficult because of my brain fog. These days, I walk around with a constant sense that I’ve forgotten to do something or that I’ve lost something. And sometimes, I get very confused by everyday things. Getting through an airport in that state was truly an accomplishment.

As I finally sat at my gate, amazed at how “off” and not completely present I was, I knew in my heart of hearts that, in spite of how much I wished to have a “normal” college spring break, it was time to go home.

Yes, I’m ready to be brought back. 

Oh, IVIG, please bring me home. Bring me back to who I am. Bring me back to the days when OCD didn’t force me to make everything “just right.” Bring me back to the days when I wasn’t afraid of everyone. Bring me back to the days when I wasn’t in constant pain. Bring back my memory. Bring back my concentration. Bring back my mental clarity. Bring back my mind. Bring back my health. Most of all, bring back my hope.

One way or another, I’m going home. It may not be this flight, this trip, and this treatment that gets me there, but somehow, I will find my way. I’m going to go home. Something, someday, will bring me back.

Slamming the Door on OCD

It’s just a doorknob—just a little piece of metal attached to my door. For most people, it’s an overlooked necessity that doesn’t get a second thought. But for me, it’s a peril.

Until a few days ago, I’d gone the entire school year without ever touching my bathroom’s doorknob. I avoided this by either leaving the door cracked enough to let me use my feet to open the door, or I grabbed the doorknob with a designated washcloth that I kept nearby. Unfortunately, I often don’t touch any other doorknobs or handles of any kind in the rest of my apartment, either—not the refrigerator, not the microwave, not the cabinets, and not even the doorknob to my own bedroom.

I had been bothered by this set of compulsions for a long time, but the idea of going through Exposure-Response Prevention therapy to get rid of them seemed like much more work and trouble than just continuing to follow my rules—until I kept getting texts from my roommate kindly asking me to stop slamming doors.

I was rather confused at first. I had no idea I was slamming doors, but after a lot of thinking, I realized that some of my compulsive behaviors had become completely unconscious. I realized that a lot of the time, the only way I was closing a door hands-free involved slamming it.

To make matters worse, my roommate told me she has phonophobia: fear of loud sounds. Every time I closed the doors my way, she got debilitating anxiety. (We’re quite a pair aren’t we? The OCD girl’s compulsions set off the phobic girl’s anxiety.)

One part of me was mad that anyone would dare ask me to stop my compulsions, and I was embarrassed that they’d gotten so bad that I couldn’t. Another part of me, knowing how disruptive anxiety can be, felt horrible for causing my friend distress.

So this turned out to be my final straw—I now had the perfect excuse to make myself do some ERP to get over the door-closing compulsion.

That night, I decided to do the unthinkable: grabbing the bathroom doorknob without a washcloth and without washing my hands afterwards. As I trudged over to the door, my heart began to pound. My legs started shaking. My hands trembled as I reached for the knob. Before I could talk myself out of it, I quickly grabbed on and then stood there for at least two minutes.

My brain soon realized that touching the doorknob wasn’t dangerous after all, and my physical anxiety symptoms died down after a few more minutes. After a while, the exercise wasn’t unpleasant at all.  I did so well with this exposure that I proceeded to go touch many things in my apartment that I’m not allowed to touch.

Although I’ve since reverted back to using the washcloth on the doorknob, I’ve shown myself that it is possible to break free and not nearly as unpleasant as I’ve imagined it to be.  However, I’m still rather shocked that my OCD has once again gotten to the point where not doing a compulsion put me on the verge of a panic attack.

But you know what? Even though doorknobs have shut me into OCD again, I’ve realized that if I keep touching them, some day, they will allow me to reopen the door to my freedom.

The Run of My Life

Recently, I signed up to run in my first half-marathon.  I was planning to cross the finish line this summer as the ultimate way to overcome PANDAS. I was hoping to be able to say, “Nine months ago, I couldn’t walk, but today, I’m totally healthy and symptom-free!”

But my plans have been ruined, and my dreams have been shattered.

When I underwent high-dose IVIG therapy in August, for the first time since I got sick eight years ago, I was hopeful about making a full recovery. I knew it could take up to a year for me to get completely better, but I didn’t mind. As long as I was getting better, no matter how slowly, I could keep hoping.

But then I stopped getting better.

I started tapering off my daily 20 mg dose of Prednisone in December, and I’ve gone downhill ever since. When I got to 3.5 mg, I was close to psychotic. I had some sense that I wasn’t right, but I wasn’t completely aware of how irrational and out-of-it I was. I stayed in bed all day long and didn’t go to class. I have since been staying at 7.5 mg, and although I’m in my right mind, I know I’m still not “right.”

Two weeks ago, I had the second-worst panic attack of my life during an exam. It had been three months since I had a panic attack at all. Even when I made up the test a week later, I was fighting off another attack the whole time, and as a result, I got a low grade.

On top of that, my OCD is suddenly out-of-control, to the point where I sometimes stay in my room instead of doing what I want because I don’t want to have to go through my decontamination rituals when I get back home. Not too long ago, I would’ve told you I hardly had any sign of OCD.

And now, I get confused at the strangest things. In church yesterday, as the offering plate was passed around (the same way it always is each week), I stared at the folded up checks in the plate and actually wondered for a moment, What am I supposed to do with this? What are those pieces of paper? Do we each take one?

My ticks and chorea are also back, and falling down is a daily occurrence.  My concentration is a joke.  No matter how much I sleep at night, I fall asleep all the time during the day without Provigil. I sometimes impulsively eat when I’m not even hungry (and I’ve still lost two pounds in the last month).

My parents told my neurologist about my ongoing symptoms, and now I’m scheduled for a second IVIG in March.

So here I am, six months post-IVIG about to go through the whole process all over again. I’m going to have to keep fighting for far longer than I expected. I may need plasmapheresis, too. I’m going to get extensive viral and infection testing to be sure there isn’t another underlying cause for my continuing flares—and if something comes back positive… Well, I don’t want to think about having to fight that off, too.

To say I’m devastated doesn’t even begin to express what I feel right now. It isn’t the fact that I’m spending two more days of my life getting treatment—it’s the fact that my “everyday” is still terrible. It’s the fact that the first IVIG wasn’t enough. It’s the fact that I’m still so sick when I hoped I would be almost completely better.

But I’m still running. I’m still training as hard as ever and not giving up on crossing that race’s finish line…

I don’t understand why I can still run when I’m otherwise dysfunctional, but running gives me the courage to keep persevering through the fight of my life when I’m sure I cannot possibly go on. Every time I finish a long run in spite of the last few miles of feeling exhausted and wondering how I would have the strength to finish, it gives me hope that I will someday also cross the finish line of PANS.

Someday, I will look back on this eight-year endurance challenge feeling on top of the world, and I will say, “That was one helluva run, but I did it!”

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…

Falling Off

This bulletin board represents my life

Even though I love to decorate my room, when I moved into my apartment in August, I could only muster the willpower to put just a handful of small pictures on my bulletin board. During my Freshman year, I’d made my room look like “an Athenian palace,” as one friend put it—at least when I didn’t leave my trash strewn all over the floor (thanks, hoarding OCD).

My lack of decor last semester was an analog of my life. When I finally turned a corner in November, I covered most of my bulletin board with posters, postcards, pictures, and swag from my first 5k race. The better I’m doing, the more things are on the bulletin board.

A few weeks ago, pictures and papers started falling off, one-by-one. I didn’t put them back.

On some level, I knew I wasn’t feeling completely like myself, although I kept trying to pretend I was okay. But more pictures kept falling…

I began to struggle through each day more and more, feeling increasingly detached from everything around me while the ever-emptier bulletin board subconsciously reminded me I wasn’t myself. Then one night, I finally fell off a cliff.

I realized I’d come down with a virus. The virus itself was hardly noticeable, but the PANS symptoms that it caused to flare were debilitating. That night, I lost it. I was agitated for no reason. I kicked at the wall and made more papers fall off the board by accident.

While lying in bed, I thought to myself, I should go run around outside. I had no purpose or destination. I just felt strongly that I needed to do it—never mind that I was in my pajamas and it was extremely cold. But then the rational part of my mind kicked back in a little, I guess I should grab my keys. It never occurred to me how little sense it made and that if I was running around outside in my pajamas at 1:00 in the morning, campus police would probably think I was intoxicated—or take me to the psych ward.

The fatigue from the virus kept me in bed, but then the intrusive thoughts started up again and were very disturbing. I was severely depressed. Sometimes I actually believed the thoughts. Sometimes I wondered if I actually wanted them to be true. I didn’t know what thoughts were mine anymore. I didn’t realize how irrational I was thinking and behaving.

During one moment of insight, I finally reached for my phone and called my parents: “Mom, I need you to come right now. I’m losing it, and the thoughts are getting scarier and scarier.”

I ended up going back on a higher dose of Prednisone again. Amazingly, after a few days, it mostly brought me back to where I was when I was at my best in November.

This week, I’ve put everything back up on the bulletin board—and I even added some new things. I’m not depressed at all now, I’m ticking less, and I’ve had no trouble with remembering words. I feel connected to the world again.

I didn’t realize how far gone I was in that flare until I came out of it. I wasn’t too frightened at the time, but now I’m terrified that a cold made me lose my mind. What a horrible idea to live with!

I could worry about it happening again. I could back into a corner and scream, “Why me?” I could stay in my room and not come out so that I couldn’t catch another virus. Or I could just enjoy all the good days I’m having right now. I can keep living and doing the things I want to do.

I’ve decided to keep putting the pictures back even if they fall off sometimes. When they fall, they’re not gone forever—they’re only displaced. It’s hard to feel like you lose huge pieces of yourself sometimes, but I know they will always come back eventually…

My 6-Mile Run… To the Pharmacy

Managing my medications is a big production. If I didn’t have a pill case, there’s no way I could possibly remember to take all eleven things each day.  Every week, I sit down and fill the case for the week. It takes half-an-hour. It used to take longer when my OCD was worse and I had to check and re-check everything a ridiculous number of times. I only check it once now.

Just a few of my daily meds

Just a few of my daily meds

As you can imagine, I am over at the pharmacy a lot between the Prednisone, Nuvigil, Augmentin XR, and all the over-the-counter medicines and supplements I take. You know it might be a little out-of-hand when you walk up to the counter and the pharmacist says, “Oh, it’s you again.” True story.

A few days ago, as I was lining up all the bottles and getting ready to put everything in my case, I got to the Augmentin XR and realized I only had a few days left. I needed to go back to the pharmacy… Again. The problem is, the pharmacy is a mile away from where I live. If I drove there, I would lose my good parking spot. Walking would take too long.

So I did the only logical thing: I decided to turn my trip to the pharmacy into the destination for my first ever 10 km run.

Do you realize the irony here? I was about to run six miles to go pick up the medicine I need to take because I’m sick. Hmm… How sick can I really be?

I put on my running gear, grabbed my pepper spray and medical ID, and headed out across town. When I had run one mile, I was hardly tired at all. By the second mile, I was barely sore. By the time I reached mile three, my joints were complaining a little bit, but I thought to myself, “I’ve only gone three miles. I feel great!”

Only three miles. Just a few months ago, I could hardly run one mile. The fact that I’m now thinking of three miles as a short run is incredible.

At mile five, I took a wrong turn, and I realized I was lost. But hey, I had 1.2 more miles to get to the 10 km goal, so I kept running. Unfortunately, when I finished, I ended up 1.5 miles away from the pharmacy. I felt like I could have kept running to get the rest of the way there, but I didn’t want to push it. Besides, I had done it—I ran 10 km (about 6.2 miles).

When I got sick in 2006, I had been training to work my way up to running a 10k race. And then PANS hit me like a train, and I had to stop running altogether before I got past running four miles. But I had done it now, albeit eight years later. Take that!

As happy as I was for this victory, I also realized that I was in quite a predicament. I didn’t know the area I had ended up in, it was getting dark and cold, and the pharmacy was 1.5 miles away. Should I wait at the bus stop? Should I call a friend to pick me up? Should I get a cab? I decided to walk and use the time to call my parents.

The amazing thing is that the worry that I physically wouldn’t be able to walk 1.5 miles because of my falls never even crossed my mind at the time. I just started walking, and the whole way there, I didn’t even have the slightest knee-dip or feeling of paralysis. I was just a normal, tired runner walking home (and stopping at the pharmacy on the way there).

On my good days, I often start to think, “Hey, maybe I’m better now!” But then I look at my pill case and realize that it takes 24 pills each day to feel the way I do—and I’m still not 100%.

Still, even if I’m walking around carrying the pills, at least I’m walking at all. For now, I can dream about the day when I’ve left all the bottles behind and don’t even realize it—just like I didn’t realize how amazing it was that I walked 1.5 miles…

How Do I Stay Positive?

When I look back at the last few months and think about everything I’ve been through, I’m often surprised by my own resilience. What keeps me going? Why do I not give up? And I think to myself, “How in the world do I stay so positive?”

The answer? I don’t.

In our society, there’s a faulty idea that being strong and tough means holding in all emotions except the pleasant ones. We salute the people who go through terrible things and still smile and look on the bright side at the end of it all. We are forever being told that as long as we can be optimistic about life and stay positive, we’ll get through whatever comes our way. Although no one ever says so, to me it often seems like crying and grieving and expressing pain is frowned upon. Everything will be okay. Just be positive!

But sometimes, there really is nothing to be positive about. Do you want to tell me that it was a good thing I became suicidal and anorexic this summer? Would you dare say that there was any benefit to suddenly not being able to walk? Can you explain to me why there was anything nice about being trapped by OCD for six years?

For a long time, I bought into the lie of optimism. I tried to tell myself things were never “that bad.” If I started to get upset, I would quickly squash down any negative feelings I had.

Certainly, there where times when I had to do this to survive. Some circumstances are too traumatic to let yourself feel the pain all at once. But in my case, I often just denied how bad my situation was because I thought doing so was what it meant to be strong. But then, I learned something…

The bravest thing is not pretending the bad things didn’t happen—it’s diving into them headfirst by admitting that something terrible has happened. It’s letting yourself feel the pain. It’s mourning what you’ve lost. It’s coming to terms with the fact that things are not okay anymore. How can you move on unless you acknowledge the tragedy that’s holding you back?

This summer, although I was mostly numb about all the bad things that had happened to me, intellectually, I recognized how traumatic everything was. I made the conscious decision to let myself feel whatever I needed to feel going forward.

Since then, there have been days when I’ve cursed out my circumstances with a tirade of f-bombs (and I’m the kind of person who never swears). There have been days when I’ve wept aloud for several hours. There have been days when I feel nothing at all. I think that letting myself feel these things is what gives me the ability to be positive the rest of the time and to keep going when things aren’t good.

This week, I’ve had a major relapse of depression because I’m tapering off Prednisone and have been fighting a couple viruses.  Every time I try to do my work, as soon as I see my assignment, I get overwhelmed with sadness and start crying for no reason.  I love what I do, but my brain won’t let me do it.  I fear for the next few weeks if this flare doesn’t stop.

There are some positive things right now, though. My OCD is almost non-existent. I haven’t fallen down in close to a week. I’m not ticking much. I’m able to stay awake on only 125mg of Nuvigil again…. But thinking about these good things does nothing to make the debilitating depression go away. Even with all the positive things, living with PANDAS is still awful right now.  Why should I pretend the improvements make this setback less miserable?

I can’t fight against the sadness right now, but feeling it doesn’t mean I’m weak.  No, it means I’m strong enough to admit my pain.  And I’ll keep moving forward as best I can.

IVIG: Four-Month Update!

It’s been over four months since I had IVIG—and six months since the abrupt onset of my tics and other movement problems. On the whole, I’d say I’m much better.  I’ve even started tapering off the steroids.  The way I put it with my family is that I finally feel like a person again.  I’m almost back to where I was before I started flaring two years ago—with the addition of tics, some walking issues, and hypersomnia.  It’s not all forward progress, though.  It’s really more of a two-steps-forward-one-step back process.

The movement problems have gotten slightly worse again, although they’re still nothing like the crazy chorea dance I was constantly doing this summer. The hypersomnia is by far the worst symptom now. I’m completely dysfunctional if I don’t take the wakefulness med Nuvigil. I fall asleep after sitting down anywhere for more than ten minutes. When I do happen to be “awake,” I’m loopy and can’t concentrate. At least I have Nuvigil… My doctor just started me on another anti-inflammatory called Plaquenil, so I’m hoping maybe it will help some of this.

When you’re sleep is messed up, everything is messed up.  I still have trouble with concentration and processing written information. The less steroids I take, the more I often I have trouble coming up with words for everyday objects, which only makes my social anxiety worse.  But I’m not depressed anymore. I still have quite a bit of general and social anxiety, but I was able to have a small party at my apartment at the end of the semester—even though the idea of having five friends over at once had me shaking all over earlier that day. A couple months ago, I know I wouldn’t have even considered inviting friends over.

Perhaps the most mind-blowing improvement is with my OCD. I’m slowly not carrying out compulsions anymore without having to go through months of CBT/ERP like I did in the past. There are times when I find myself touching something I wouldn’t have dared handle a couple months ago, and I only realize what I’ve done afterwards. I’m not sweating through anxiety when I don’t do my compulsions—I’m just not doing them without thinking about it. It’s amazing. As someone who has been through CBT before (and had success at the time), it’s very strange to see your brain rewiring itself without you having to consciously work so hard at it.

At my latest follow-up, my doctor told me I looked “less tormented.”  And that’s how it feels.   However, she was quite concerned about the sleep issues—especially that they had come back after being completely gone and that they didn’t go away on a Prednisone burst this time.

“At this point, we can talk about doing another IVIG,” She said. “But we need to wait at least six months to be sure you need it.”

I wasn’t surprised. But now I just have to keep waiting… again.

Nevertheless, on the whole, I’m doing so much better, and I’m very happy with the progress I’ve made. But do you want to know a secret? Getting better is frightening because the better I get, the more I realize how far gone I was this summer.  In June, I was hardly upset that I had stopped eating and couldn’t walk and suddenly had uncontrollable movements everywhere. I was apparently in a bit of a daze, and I had no idea how much I’d really lost my personality. Now that I’m back, I get it, and I’m even more grateful for my continuing recovery.

 

I’ve had this blog for over six months, and the responses and support I’ve received so far have been incredible. Thank you. I would love to get some feedback from all you amazing readers about what you want to read about next. I’m planning to continue posting regularly at least until I get 100% better and then for a few months afterwards.  That’s probably another year or two of writing.  (And then I want to turn it all into a book, but that’s another story…)

What topics would you most like to read about? Do you have any questions for me, as an eight-year survivor of OCD and PANS? Please comment with your ideas and thoughts!

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).

I wish Scrupulosity got more attention both in the OCD community and in churches and other religious organizations. How many people are secretly tormented by unwanted thoughts and believe that God is mad at them because of their struggle? How many people are worried that they need an exorcism, when really, they have a misfiring brain that can be treated? Even one person going through what I have is too many.

Words are completely inadequate to describe the despair of feeling as though the next intrusive thought that came into my mind could ruin me forever—and living with the awful suspicion that I’d already doomed myself to an eternity apart from God. Scrupulosity is surely the closest thing to Hell that exists on this side of the grave.

If I told you it was once like the constant dripping of a Chinese water torture in your own mind, it wouldn’t begin to describe the torment.

If I said it was like being blind and deaf and unable to run while knowing you were being followed around by a hungry tiger, it couldn’t describe the incessant anxiety.

If I told you it was like having someone dangle you out the window of an airplane to drop you at any moment, it couldn’t communicate the sense of impending doom.

Even if my OCD were completely gone (which it is not), I still couldn’t just get over the sheer trauma of what it once did to me.   Sometimes, I still blame myself for not being “brave” enough to try to get help sooner–and for concealing my OCD so well.  But I was petrified and did the best I could.

While I may no longer have the compulsions surrounding my obsession of being unforgivable, the anxiety is still here; I am terrified of ever having to go through that pain again. Every time I go to church, every time I read the Bible, every time I just try to worship, that sense of imminent doom follows me there, because I can never forget how OCD once used my faith to torment me. I’m always waiting for the next obsession to come that will leave me paralyzed with anxiety all over again.

Sometimes, I think that OCD is going to make the very thing I feared the most come true for real—me walking away from God. How can I possibly keep believing when it hurts so much? How can I possibly trust in a God that I am, on some level, still afraid of? How can I ever get over what happened to me?

I’m mad at God—partially for letting these horrible things happen, but mostly because He has seemed so silent through much of my ordeal. Where was God during all those nights I spent alone in my room, sweating through panic attacks over Bible verses my brain abused? Why didn’t He just plainly tell me, “Hey, I’m not like that. Don’t listen to those lies…”

But don’t you see? Even if Christ Himself had appeared to me and assured me that none of my obsessions were anything to worry about, my OCD would’ve still moved on to find another thing to torment me. And I’m convinced if I had never had Scrupulosity, I would’ve had another kind of OCD—just like how now, it has become mostly contamination fears.

I know that God isn’t like my OCD—He’s not just waiting for the next opportunity to torment me and make me as miserable as possible. No, I’ve experienced His love for myself and on some level, I do know that He is the Perfect, Good Father that He says He is.

But I can’t fully believe it—not yet, anyway.

Yes, it’s true that I have a long way to go in the healing process. But I can’t help but be grateful that I am even at a place where I can recognize that I have OCD and am not a reprobate or a spiritual failure. Had I not figured out I had OCD, I certainly wouldn’t know I have PANDAS. Considering the severity of my symptoms, I might not still be here had I not gotten a proper diagnosis and treatment in time.

As traumatic as my life with Scrupulosity was, remembering it and then seeing how far I’ve come gives me hope that someday, I’ll get to a place where the pain no longer haunts 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.

Steroids Turned Me into a 12-Year-Old Boy

It’s been more than three months since I’ve been on Prednisone. I hate the steroid, but I love it, too, because I know it’s the reason I’m able to live a somewhat normal life right now. I would never want to take Prednisone unless I absolutely had to, though, because the side effects are pretty awful: weight gain, increased appetite, insomnia, moon face, acne, decreased bone density, increased susceptibility to infections, etc… But I have to take it to keep the inflammation down and help stop the autoantibodies from attacking my brain’s basal ganglia.

Every time I’ve tried to taper off the steroid since starting it in July, the depression, anxiety, OCD, tics, movement problems, and inability to eat have come back. I don’t have a choice but to keep dealing with these terrible side effects, because living with PANDAS is far more terrible than dealing with Prednisone—even though the steroid has essentially turned me into a preteen boy.  I can explain…

Because of Prednisone, I now have horrendous acne all over my face… I just started growing a beard. I shaved my face for the first time yesterday, and now I have razor burn all over it because I have no clue what I’m doing… I think about food all the time because I’m always hungry—even after eating excessive amounts of food… Yes, steroids have turned a tiny nineteen-year-old girl into a starving, moon-faced twelve-year old boy.

Because my sleepiness had gotten so out-of-hand again, I increased my dose last week. The first time I did a 5-day burst of 50mg this summer, my sleep issues disappeared. I was hoping for the same results this time around. Unfortunately, it didn’t work out like that. I’m still just as sleepy with just as much brain fog as I had last week. In addition to more steroids, I’m also back on Nuvigil for now to keep me awake—with success.  I did have a cold a couple weeks ago, so I’m hoping and praying that this flare will calm down after I get over it.

I’m not going to lie—I’m pretty discouraged that the sleep problems have come back. It really scares me that Prednisone isn’t enough to stop them anymore. Is the IVIG not working? Am I going to need plasmapheresis after all? What if I actually have brain damage that’s causing the sleep disorder now?

But there is a bright side to it all…

While I may have a moon face, and I may have terrible acne, and I may not be sleeping right still, my depression is gone. Just gone, because apparently, it’s related to the inflammation in my brain (hence it disappearing with more steroids).

I’m feeling like myself for the first time in at least six months. I’ve actually been able to enjoy my hobbies. I look at my full calendar, and instead of dreading ever last thing on it, I’m happy to see all the events (and even school assignments) penciled in on each day. I actually like my life and have stopped hearing the intrusive thought, I hate my life… I hate my life…. I hate my life… over and over again.

While I’m sad to have to be sleeping so much again, I am overjoyed at the fact that I feel like myself in other ways. Sometimes, the trauma of the last few months comes and hits me like a train, and I just cry. But lately, the realization that I’m “back” also makes me cry—with tears of joy. When an illness tries to take everything from you, the moment you get any part of you back, you will appreciate it so much more than you ever could have before.

And I believe and hope that someday, I’ll know what it’s like to feel like myself and to feel awake…

3 Months Post-IVIG: A Wild Ride

Today is the three month anniversary of my IVIG treatment. It’s hard to believe it’s already been that long, but at the same time, it seems like an eternity ago because the last three months have been such a wild and difficult ride.

So far, the main improvement I’ve seen is with the chorea and tics. I’m starting to have a lot of days where they’re barely noticeable. The chorea is usually just a slight arm or leg jerk here or there—I don’t look like I’m constantly dancing anymore. I can actually sit still!

I've ditched the cane!

I’ve ditched the cane!

As for the walking issues/muscle weakness, that has improved significantly. In June, I could barely walk across the room without my legs giving out on me. I would be trying to walk normally, and suddenly my legs would become momentarily paralyzed so that my knees gave out and I fell to the floor.

Now, I often only have a couple minor knee-buckling episodes each day, and I’m usually able to catch myself before I go all the way down. These days, it just looks like a slight “hiccup” in my step when it happens.  I’m so glad I no longer have to walk around wearing knee pads while trying to stop the falls with a cane…

So has it been steady progress since my infusion? Absolutely not—especially when it comes to the mental symptoms. I have yet to see much improvement in my OCD or social anxiety. They’re both almost to the point of being out-of-hand.

As far as depression goes, I’m having some very good days when I’m hardly depressed at all, but I’ve also had some horrible days where I hate my life and just want to do nothing but lie in my room by myself and sleep.  Sometimes, everything just makes me cry for no reason. (Well, it is for a reason: brain inflammation.)

But that’s not even the worst of it. I’m having a relapse of my sleep disorder.  I cannot stay awake during the day, no matter how many hours I sleep at night.  If I sit down anywhere for ten minutes, I’ll fall asleep. The other day, I even fell asleep while standing up in a lab and nearly fell onto some expensive equipment on the lab bench. Oops…

So unfortunately, I’m still living up to my name: the Dreaming Panda.

I’m trying to stay positive about everything. I’m trying to think about how great it is to be able to walk again and to be able to sit completely still during class. But it’s hard. It’s really hard sometimes—especially when you’re so sleepy that you’re living in a dream world where everything seems unreal and a bit far away.  And let’s not forget how OCD and anxiety can confuse your world, too… (I have an entire future post dedicated to discussing this).  How do you see through the chaos of a brain that isn’t quite working normally yet?

But still, three months later, even though it’s been frustratingly slow, my progress towards recovery is becoming undeniable.  As hard as these months have been, I’m told that three to four months post-IVIG is usually the beginning of major improvements in PANS/PANDAS symptoms.  So yes, this eight-year nightmare must finally be coming to an end…

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.

Signs of Hope

For the first time in four months, one night, suddenly, I realized my choreiform movements were gone. When I woke up the next morning, my body felt completely different. That night, I felt a tingling session in my head and legs, as if my brain were healing itself. The next morning, I had a sense of the disease departing from me, and people were even telling me that my “energy” was different. For the first time in several months, I was enjoying my life again.

Since those wonderful two days last week, I have had some mentally rough days, although the chorea and tics continue to be quite mild. Could the IVIG actually be starting to work? I think I’m daring to hope that it is.

So far, this whole healing process has been a lot of ups and downs—perhaps mostly downs for the first month. But every once in a while, I get a really good day or two, and it seems like the good days keep getting better. I’m just hoping that the bad days keep getting less bad until, eventually, a bad day is only what a normal person would think of as a bad day—maybe just feeling a bit tired because I didn’t sleep enough, or something like that.

I just passed the two-month mark since my IVIG treatment in August. I was told it could take as much as 3-6 months before major improvement, so this is a good sign. I still haven’t been able to come off the steroids, but I’m still better off now than I was two months ago on a higher dose. Even though it doesn’t seem like it sometimes, I think I’m finally starting to get better. I have hope now that I really am going to beat PANDAS.

Still Falling… And Getting Back Up

So I know it’s been awhile since the last post, but it’s been for good and bad reasons.

I had two weeks where I almost forgot I had PANDAS sometimes—days where I could get done almost everything I wanted to get done. I was walking normally and having a lot less chorea. My mind was mostly clear, and my concentration was good. I even had an almost normal amount of energy. So far, I’ve been able to make all A’s and a B+ in my classes. Even so, I haven’t had time for a social life. All I’ve been able to do is do homework and rest. On the outside, it was looking like I was doing pretty well. But then I started having more bad days.

My roommate got sick. I didn’t—or at least I didn’t have any symptoms of that cold. Instead, I started flaring again when my immune system kicked up to fight whatever virus I was exposed to. I started getting bad panic attacks. My mind went fuzzy. I started having excessive daytime sleepiness like before. To make matters worse, it was time for me to lower my steroid dose, and things got so out-of-hand that my mom had to come stay with me in my apartment one night. I guess I don’t yet get to forget that I’m really sick.

The truth is that I am far from recovered. I still have quite a bit of contamination OCD. I still have choreiform movements. I still get panic attacks and anxiety. I forget simple words throughout the day and struggle to articulate myself when I speak—but in my mind, I know exactly what I’m trying to say, even though I don’t know the words. And now that I’m on only 10mg of Prednisone, I’m not able to walk normally for more than a couple minutes (but usually only a few steps) without my legs giving out underneath me. I don’t usually get upset about my illness, but not being able to walk very well is really getting to me this time.

I hate this disease. I know I’m supposed to get better, but having to live with it every day until then just sucks, and there’s no way around that. And sometimes, I think the depression just might be the worst part. I don’t know if my depression is from brain inflammation or if it’s because I’m wary from fighting this illness for so long. I think it wouldn’t be fair to attribute it solely to either one—I think it’s both. I’ve had to be too strong for too long, and I can’t keep pretending any more. I’m sick of being sick.

With any kind of illness, there’s always the physical disease itself and the emotional component of learning to deal with it and the shock that you have it at all. But what makes PANDAS particularly traumatic is how suddenly it tears apart your life. One day this summer I was sort of okay, and the next day, I had the worst panic attack of my life, was falling down whenever I walked, and began thrashing around uncontrollably to the point that my terrified parents took me to the ER. Nothing has been the same since that day in June.  I am still upset about what happened, especially since I still have quite a bit of involuntary movements.

You never see PANDAS coming—it just steals yourself from you while you’re busy living your life.  It affects the whole family.  My mom has admitted to me that she has some PTSD over what I’ve been through. My dad will hardly talk about my overnight decline in June.  As for me, I’m really depressed because I know that every day, I have to wake up and deal with the disease all over again. The other day, I realized that I barely enjoy anything anymore.  I’m just trying to get through things without looking forward to any of it, because everything is exhausting.  I just want to be normal again, but I’m afraid to believe that the IVIG is going to make me better because I’ve been let down so many times over the years with other “treatments” for my various misdiagnoses.

But I can’t give up. Even though it doesn’t feel like it, I have made some progress, because the fact that I am even able to attempt college is miraculous. Everything is really hard right now, but it’s not impossible. I just have to take it all one step at a time. Yes, a lot of my steps end in a fall right now, but I’ll just keep getting back up and trying again.

Another Flare…

Last week, I had my worst flare since everything really went downhill in June. I’m happy to say that the flare is gone now (thanks to more Prednisone and maybe the IVIG), but now that I’m coherent again, I thought I’d share what my PANDAS flares can look like. Please bear in mind that every person reacts differently to this disease, though.

One morning last week, I woke up and didn’t want to get out of bed. It felt like I was in slow-motion. By the time I got to class (a miracle in itself), I realized I was completely out-of-it. I felt removed from everyone and everything—like I was outside my body. I felt like my personality was gone. I couldn’t pay attention for very long no matter how hard I tried. When I did manage to catch something my professor said, I couldn’t process what he was saying.

Attempting my homework was a disaster.  I tried to read the questions on the assignment, and while I could understand any of the words in the sentence individually, I could not piece together what the sentence as a whole meant.  I had to reread it over and over again very slowly until it made sense. It felt like trying to read another language.

To make matters worse, it was a timed assignment online that I was working on. I’m supposed to have double time for everything, but for complicated reasons, I didn’t have it on that assignment. Naturally, anyone would be a little anxious about that. But in a PANDAS flare, to say being timed made me anxious is the understatement of the century. My heart was pounding. My hands began to sweat. I hyperventilated through most of the assignment. It felt like life or death.

Then, there were the OCD symptoms.  I had intrusive thoughts a lot of the time.  I wouldn’t touch anything in my apartment without wiping it down or washing my hands afterwards.  I must have spent two minutes washing each time.  I had to feel decontaminated and “just right” before I could stop.

Later that night, when I finally managed to get in bed, there was a new obsession to torment me. This particular obsession was especially bad, and the compulsion I had was impossible to carry out at that moment, so I was stuck just sitting in bed with the anxiety. In the long run, it’s better to try to resist the compulsions, but having to sit on the verge of a panic attack was extremely unpleasant.

As the anxiety began to sky-rocket, the movements also got out-of-control. After a few minutes of breathing into a paper bag and trying to distract myself from the obsession, I jumped out of bed and reached for some ibuprofen. (Ibuprofen often helps PANDAS/PANS patients like me, because it apparently reduces brain inflammation.)  Because of my chorea, I was flailing all over the place and fell down at least twice on the way across the room. I tried to stand still to open the bottle, but instead, my brain just made me slowly crumple down onto the floor. Amazingly, once the ibuprofen began to kick in, the movements and the OCD became manageable.

One thing that makes PANDAS/PANS different from regular OCD or tic disorders is how suddenly it comes on. Keep in mind that the day before my flare started, I was feeling close to normal (okay, whatever I think of as “normal” at this point). My OCD had been moderate, and it suddenly turned very severe over several hours. But my doctor has put me back at a higher dose of Prednisone for three weeks, and thankfully, after a few days of it my OCD has gone back to my baseline—without even needing ERP or CBT. Severe OCD isn’t supposed to just go away in a few days when you take steroids—unless it’s PANDAS or PANS.

Going through another flare was extremely unpleasant, but it’s made me so grateful all over again to have an answer and to be receiving proper treatment. I can’t imagine continuing to have to live my life spending weeks or months recovering from each flare and wondering when the next one will be—but I won’t have to before long. Things are getting better now. I’m daring to hope that last month’s IVIG is going to work and stop these flares…

Battle Scars

One day of meds/supplements...

One day of meds/supplements…

For much of the summer, my illness was completely invisible, but lately, with one look at me, you know something is going on. If I try to walk around normally, my chorea often makes me look like I’m being electrocuted or like I’m doing some weird dance—but it’s completely involuntary. I have horrible acne from one of my medications. I’ve started to develop a puffy “Prednisone face.” My arm is covered in strange bruises from IVIG and all the blood work I’ve had to get.

When I look in the mirror, I could easily let it get to me, and I could sink into despair. There have been times when I’ve been afraid to go out, because I thought everyone would just stare at me. Indeed, it is rather alarming to look different—though I know that my appearance is not the only thing that has changed as a result of PANS.

But you know what? I don’t care anymore. I know I’m beautiful because of who I am in Christ.  I know the unpleasant things I bear on the outside are just battle scars—scars that will soon fade away.  And I’m not ashamed of the scars anymore. I know how fortunate I am to be alive and well enough to even be thinking about how I look. I don’t regret for one moment the fact that my treatments have given me these temporary side effects, because they have also given me my life back.  And I’m hoping and praying that they’ll make the chorea go away soon, too…

I’ve decided that I can’t worry about what other people think of me. They don’t know my story or who I really am. Sometimes, people are just plain mean (and that’s their problem), but sometimes, other people might decide what they think about you based on how you see yourself and how you treat them. So I’ll choose to be beautiful and treat everyone with kindness. You never know what might be hiding behind others’ battle scars.

IVIG and the Waiting Game…

IVIG: Intravenous Immunoglobulin from 1000 donor antibodies...

IVIG: Intravenous Immunoglobulin from 1000+ donors

So I just got back from IVIG, and it really wasn’t that bad. I did it over two days, with the first day lasting about four hours and the second for six. I still have headaches from it, a bit of nausea, and some fatigue, but I don’t really care, because I feel hopeful that the therapy will give me my life back.  These temporary side effects are such a small price to pay for my freedom.

Now, I just have to wait for the positive effects to kick in—and hope and pray that they actually do kick in at all. Apparently, for most people, it takes three to six months to see a big improvement, but sometimes you start feeling better in a couple weeks. It can take up to a year for all the PANS/PANDAS symptoms to disappear completely. Occasionally, IVIG doesn’t work at all. But my nurse said to me, “Don’t worry. If you responded really well to steroids, IVIG is going to work.”

I don’t usually show my emotions much, but I broke down and cried as soon as she said that. Could one IVIG really heal me? Yes, it should. The thought that this eight-year ordeal is going to end and the idea that I will know what it’s like to feel good again—well… It’s overwhelming. But I’m ready for it.

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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