PANDAS & Lyme: My Recovery and 8 Years of Misdiagnoses

Archive for the ‘Treatment’ Category

My Narcolepsy Diagnosis Almost Killed Me

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

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

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

“You have narcolepsy.”

My whole world shattered.

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

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

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

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

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

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

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

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

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

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

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

And then I woke up.

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

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

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

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

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

Why I Almost Quit Lyme Treatment

I pretty much take an entire pharmacy every day

 

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

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

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

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

I can’t do this anymore…

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

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

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

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

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

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!

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.

IVIG #3: Third Time’s a Charm

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

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

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

So am I better now? Is life perfectly peachy now that I’ve had IVIG?

Not even close.

As I’ve said in the past, IVIG is really only the beginning of recovery—not the end. I spent much of the summer trying to hold myself together long enough to make it to IVIG, but now that it’s over and I continue to struggle, I’m realizing I still have to keep holding myself together. It’s not like you get IVIG and then you’re better. No, it can be up to a year before IVIG has its full effect.

I’m no stranger to this long healing process, though—this is my third time going through it. But of course, I don’t like to think about how long it can take to get better and what it entails. I’m not going to lie to those of you out there doing this for the first time… It’s hard—but so worth it in the end.

Some days and weeks, you might do extremely well and maybe even forget PANDAS is part of your life. Others, you might be worse than you were before IVIG. But a lot of the time, you won’t be sure if IVIG has done much good at all. Yet the truth is, if it’s working (and it does fail 10-15% of the time), it’s probably working so slowly that you can’t even tell. Blogging and keeping track of symptoms has helped me in the past, because it’s given me reference points for comparison that showed me I was getting better, even if I didn’t feel like it.

Every IVIG is different, however, because it’s always a unique set of people’s antibodies, and you never know how your body will respond to them. (This is one reason it sometimes fails.)  You and I will have unique experiences with our different IVIGs.

Each time I’ve had this treatment, it’s taken a different amount of time to work. The first time, it was two months, and then it stopped working another two months later. The second time, I improved some right away, but it was nine months and a tonsillectomy later when I felt like my symptoms no longer interfered with my life. This time, I’ve also improved right away, but now I have to wait to see what happens next.

I know this might be a long and difficult journey, but I’m not afraid of it, and I’m optimistic that I’m going to beat PANS for good this time around. I’ve already made huge progress. Plus, my doctor says she’s finding IVIG to be more effective when you don’t have tonsils/adenoids like I don’t.

I can’t know what the future holds, but I’m choosing to believe that, when it comes to me and IVIG, the third time’s a charm.

Goodbye, Anorexia?

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

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

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

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

But one day this week, I looked in the mirror and saw my ribcage awkwardly jutting out in front of what was left of my stomach. I’d now lost seventeen pounds and weighed less than I did in sixth grade. I noticed bones in places that I’d never seen before. I realized how terrible I felt all the time: I was always cold, I had headaches every day, I couldn’t fall asleep, my brain was foggy, and I was constantly forgetting things. All of my POTS symptoms were suddenly getting worse, too. Recent blood work showed anemia, and my doctor told me I’d be in the hospital soon if I didn’t start eating more. Most frightening of all, I was having constant chest pain, which could’ve be a sign that my body was starting to break down the heart muscles as it was running out of other fuel.

Indeed, I was slowly dying. Then again, anorexia had so taken me over that I wasn’t really living anymore anyway. I was terrified to think of being in the hospital with a feeding tube—but I was even more afraid to eat. How could anything change?

I wish it were as simple as just “snapping out of it” and deciding to eat more, but it’s not. The idea of eating an extra one hundred calories is enough to send me into a panic attack. My brain screams at me to restrict so loudly that I can no longer hear the voice of reason. Even when I know it could kill me eventually, anorexia has so much control over me that I will fight with everything I am to continue to restrict. I am a slave to my own torment.

Nevertheless, I found freedom this week with my third round of IVIG. I don’t understand it, but yesterday, I ate all three meals without even trying to count the calories—usually, I have to plan everything out ahead of time and be sure I’m not going to eat “too much.” I’m normally extremely anxious about going to restaurants because it’s so much harder to count the calories, but yesterday, it was fine; I enjoyed my meals like a normal person. It’s like that terrible demon called Anorexia has left me.

You see, with every IVIG infusion, I get a dose of a steroid called Solumedrol. In the past, I’ve noticed immediate relief from symptoms because of it, so if there was any doubt that my anorexia was related to brain inflammation, it’s gone now—you’re not supposed to get better from anorexia just because you had some steroids and immunoglobulins. But the real question is: will I stay better?

As I finish up this third round of IVIG today, I’m bracing myself for the post-IVIG flare that I always have two weeks later. I’ve decided to continue to see the psychiatrist every week for therapy, because I don’t want the restriction to creep back in. I’ve told my parents how they can hold me accountable, so that they can help be sure I don’t lose any more. I’m calling a nutritionist, because even if I were somehow totally “cured” of the mental aspects of anorexia, I still have to recover from the physical consequences of malnourishment.

I don’t know if or when this eating disorder will come back to enslave me again, but I do know that this time, I’m not going to listen. I reached my physical and mental breaking point this week, and I never want to go there again. Life has more to offer than starving myself and being tormented by food. I don’t like to think of what would happen if I continued with that, so I’m running as fast as I can toward recovery.

Goodbye, anorexia. Hello, life.

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.

Treatment Is a Kitchen Sink?

Treating PANS can mean trying the whole kitchen sink.

Treating PANS can mean trying the whole kitchen sink.

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

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

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

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

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

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

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

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

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

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

The Day Recovery Began…

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

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

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

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

But in an afternoon, my whole world collapsed.

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

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

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

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

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

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

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

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

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

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

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

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

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.

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.

Another Flare, Another Decision

With PANDAS, it’s astonishing how much can change in one day. Last June, I developed a tic disorder and became unable to walk in just a few hours. I’ve spent the year that followed fighting to get my life back. One day this week, I flared again, and it’s already had astonishing repercussions…

After a week on Wellbutrin, I was starting to feel the closest to normal that I’ve felt in two years. It was like the summer before I went off to college—I had some OCD and anxiety but was mostly functional and otherwise healthy. Unfortunately, after five days of feeling great last week, I slowly fell back into depression. Then, I got a sore throat, a headache, and a cough.

Getting sick never just means being under-the-weather for a few days...

Getting sick never just means being under-the-weather for a few days…

A few days later, I lost it.

That night, I sat down in a recliner and cried for no apparent reason. I don’t remember what happened after that, but I ended up in the kitchen. I looked at the door to the street and thought to myself, I need to run.

I was too exhausted to actually leave, so instead, I slammed myself into a wall on purpose.

I didn’t actually want to hurt myself—I just felt like I needed to do it but didn’t know why. I think when a lot of PANDAs have flares, we’re not in control of anything we think or do anymore. It’s like an outside force comes and takes over. It’s my theory that our fight-or-flight instinct (controlled by the basal ganglia that’s irritated by our bad antibodies) goes totally haywire, telling us that we have to “fight” by doing strange actions.

During flares, I feel I either have to slam myself into a wall or run out of the house; this is my messed up version of “fight-or-flight,” but the only real danger is the malfunctioning instinct itself.

Thankfully, I realized what was happening, and I made myself go to the basement to tell my parents. At this point, I was sobbing and feeling utterly hopeless. A few minutes later, I began jerking violently. My movements were suddenly the worst they’d been in months.

The next morning, we spoke to my neurologist, and that’s when I got the news:

You need to get your tonsils and adenoids removed. There might be strep or another infection hiding in there.”

It’s not typical for someone whose had two IVIGs to continue to flare every two or three weeks like I do. I’ve been tested for all kinds of viruses and infections, and they’ve all been negative. Apparently, you can have something hiding in your tonsils and not have it show up in blood work. If I do have strep or another infection or virus in my tonsils, it makes sense that I’m having flares so regularly. Unfortunately, the only way to find out if the tonsils are the problem is to remove them.

At this point, I don’t much care what it takes to stop this disease. If surgery will do it, then fine. I’ve been warned that it could be very painful to have a tonsillectomy as a twenty-year-old, but you know what? I’ve been through so much worse. I’m not afraid of the pain.

But sadly, having surgery this summer means I might not graduate college on-time. I was counting on taking online classes from home to make up for the reduced load I took last year. How could I do research and write twenty-page papers on narcotics?

I thought about forgoing the surgery and continuing to force myself through my four-year plan, but I don’t want to anymore. Although I’ve made straight-A’s and won scholarships for outstanding work in the midst of everything, I’ve been miserable in the process. I want to thrive, not just academically, but as a whole person. I decided that it’s better to give myself a shot at getting better by having surgery and taking an extra semester to finish college.

Yet again, so much has changed in just one day, because taking an extra semester means delaying graduate school by an entire year—that’s a whole year I’ll have to figure out what to do with myself at home (maybe that’s when I’ll write my book!). It’s a lot to process, and I’d be lying if I said I was completely okay with it right now. But still, if taking my time with school and getting my tonsils out is what it takes to get me better, it’s a fair trade…

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 First “Normal” Summer?

IMG_1872-small

This week, I have wonderful news… Instead of moving home for the summer like I’d planned, I’ve decided to remain at school to take classes and work.

While this may sound like a “normal” summer for an almost-20-year-old, for me, it’s a huge victory. Not too long ago, I hated everything and wanted nothing more than to go home and spend my summer lying on the couch or in bed (just like last summer). But now, I want to keep pursuing my dreams in this city—dreams that I’d pushed to the back burner for far too long because of my illness.

When I called my parents yesterday to inform them of my decision, I didn’t know how they’d react. I thought they might try to make me change my mind, but instead, they said my plans were, “the best news ever.”

“I feel great,” I said on the phone. “Really great.”

“How’s your OCD?” my mom asked.

And there was a long pause…

Recently, I’ve been having a hard time with sensory sensitivities.  If I feel certain sensations or see certain textures or hear certain sounds, I’m thrown into a flurry of compulsions and tics to try to get rid of the physical discomfort.

For example, I can’t stand it when my feet rub across the floor or the ground in a certain way. If it happens, I have to go “undo” it by stepping on the same spot again or rubbing something else in a “good” way.  Just thinking about the noise and the sensation makes me very anxious. When it gets really severe, sometimes I won’t move until I can convince myself that it wouldn’t be “that bad” if I accidentally made the sound happen.

“Well, mom,” I said, “It’s gotten to the point where I’ve considered putting rubber mats on top of all the carpet in the apartment…” (For some reason, sliding on rubber or plastic doesn’t bother me nearly as much.)

“That’s not good.”

“Yeah, I know. And then I had a couple of days when I could hardly eat… And I’m sleeping terribly and can’t stay awake without Provigil… And then there’s the ADD…”

“Well, what’s so great about how you’re feeling now?”

It’s very hard for me to identify what it is, much more to explain it, but I feel a night-and-day improvement compared to where I was before my most recent IVIG. I’ve previously written about how my perception of the world and my awareness has improved, but to put it another way:

I may still have symptoms, but my symptoms don’t have me.

I’m not completely consumed by this disease anymore. I have a life that isn’t just about fighting PANDAS. I’m doing everything I want to be doing—even if it takes me longer than most people, and even if it takes more effort. Yes, having PANS causes significant difficulties, but I’ve learned how to work around them somewhat, and I’ve come to accept my life for what it is right now.

Certainly, I’d prefer to not have any of the challenges that I have. I want this IVIG to take care of everything that’s left. I don’t want to be tossed into the throws of partial insanity when I finish my Prednisone taper next month (I’m down to 8mg now!). I want to stay at school over the summer like I’ve planned—and not in isolation at home after a plasmapheresis hospital stay.

But I suppose if push comes to shove, I still want to be cured more than anything else, so I’d go home for treatment this summer if I needed it…

For now, though, I’m going to keep living as if I’ll get to have a “normal” summer, because I like looking forward to something normal—even though I know there’s a possibility that I’ll have no choice but to go home…

IVIG #2: I’m Finally Aware

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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…

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.

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…

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!

Takin’ Roids

I’m no doctor, but recent developments have shown I almost certainly have PANDAS or PANS.

A standard way to see if symptoms are autoimmune-related is to do a steroid burst for five days. The theory is that if inflammation is the culprit, the symptoms will improve with the steroids. It doesn’t work for some true PANDAS/PANS patients if there is still an active infection like Lyme or mycoplasma causing an exacerbation.

But it worked for me. I just finished a five-day burst of Prednisone with incredible results. By the third day, I did not need any Nuvigil to stay awake, and my concentration was so good that I was able to sit down and write a paper and take a test in a timely fashion with no brain fog. My tics and walking problems also significantly lessened, though didn’t completely go away. My depression vanished. It was amazing to feel normal again!

Dare I hope that I’m not actually narcoleptic? I don’t think people with narcolepsy can suddenly stop feeling sleepy during the day. Narcolepsy is an autoimmune condition caused by the destruction of a brain chemical called hypocretin. Once the chemical is destroyed, it can’t be regenerated. Hypocretin regulates wakefulness, so if the loss of it (narcolepsy) was what was causing my sleepiness, I should not suddenly feel this awake with no stimulants. I’ll see my sleep doctor next week, and he’s going to be shocked. I wonder what he’ll say about this…

The next step is treatment with an antibiotic called Augmentin. My doctor prescribed a high dose of it for thirty days, but I’m curious to see what the PANDAS specialists will say. In the next couple weeks, I’ll be seeing an immunologist and a neurologist that specialize in treating it. I should have seen them eight years ago, but how could we have known? I’m hoping and praying that I do not have permanent brain damage from unknowingly delaying treatment for so long. But these last five days of steroids give me hope that I will soon feel normal again….

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