Why I’m Doing Better Than I Think

These days, when friends ask how I am, I tell them I’m fantastic—and for a moment, I almost believe it.

I tell them about my new projects. I tell them about grad school in the fall. I tell them about a professional development program this summer. When I talk about everything I’m doing, I fool everyone—even myself—into thinking I’m healthy.

But those days seeing friends are the good ones.

I tend to forget how I couldn’t use my hand on Tuesday because of a dagger-like pain ripping through the joints. I forget the five-day migraine, when every step rattled my brain and radiated waves of nausea. I forget my mind is so much slower than it used to be. I forget that, last weekend, I ran half a mile, and then I spent the entire week in bed far more exhausted than after I ran my first half-marathon three years ago.

It’s not that I’m trying to lie to anyone—it’s because I’ve been sick for so long that my idea of “doing fantastically” is nothing like a healthy person’s. To me, I truly am doing well.

Compared to most 23-year-olds, I function somewhere between 50-75% right now. But this is a far cry from eight months ago, when my immune system went rogue and attacked my own brain in what I now call, “The Big Relapse.”

Back then, that autoimmune assault put me into a constant slow-motion panic. I was trapped inside my head and unable to process the world around me. I went to every class, but I barely caught a single word of each lecture. No matter how hard I tried, this former straight-A student gave nonsensical answers on every assignment.

Oh, and what my loss of cognitive skills, bone-crushing depression, and involuntary movements didn’t ruin, my eating disorder did. I spent the whole semester alternating between starving myself and binging, wondering every day when my body would give out.

But today? It’s taken six months since autoimmune treatment, sixteen months of Lyme treatment, two months in intensive outpatient therapy for my eating disorder, but…

I see the light at the end of this long, dark tunnel.

I wasn’t well enough to get a job after graduation in December, but in the last few weeks, I’ve started working on my own projects. My lingering depression and anxiety, coupled with the eating disorder, had crowded out any interest I had in my work until recently. I couldn’t even think about the dreams I once had, let alone have the energy to be productive. Now, I’m working a couple hours per day and enjoying what I’m doing.

Nevertheless, it’s painfully obvious that my brain is still healing. I can’t work for more than half an hour at a time, and there are days when I lose focus every couple of minutes. Sometimes, tears of frustration well up when I remember how much easier these tasks used to be, and I wonder how much easier it would be without my cognitive disabilities.

And that’s when I realize: I’m doing really, really well.

With other kinds of autoimmune encephalitis, such as Anti-NMDA Receptor Encephalitis, people can take a year or more to recover—and some are sadly left with permanent brain injuries. Why should I be surprised that I’m not 100% six months later, either? Healing a brain is a long and complicated process, and my neurologist said my case of PANS is a form of autoimmune encephalitis, after all.

Moreover, if I’ve had Lyme disease for eleven years, as my Lyme specialist suggests, why am I surprised that I’m not recovered from that, too?  It takes many people years to get the infections under control.

No, I’m not where I want to be, but considering where I was a few months ago, I’ve come a long, long way.

It’s amazing that I’m even thinking about my future and my career, rather than just how I’ll get through the day. When I step back and remember where I came from, I should be impressed with even the humble amount of work I’ve done in the last few weeks.

Maybe to some people, I’m not doing well. But to me, given the Lyme and PANS monsters I battle, I know the truth: I’m doing a fantastic job living my life as fully I can.

How I Finally Made Peace with My Lyme Diagnosis

“Close your eyes,” the Lyme specialist said. “And hold your arms out straight.”

My body began to jerk while I stood in front of the exam table with my arms extended. As I strained to stop the involuntary movements, I could sense my parents’ dismay even through my eyelids.

I’d come to that consultation in 2016 expecting to be told I couldn’t have Lyme disease because I didn’t have symptoms. But in that moment, I realized I couldn’t hide from the truth any more.

“Okay. That’s enough.” My specialist paused and glanced at the copious notes she’d taken on my history and all the other abnormal parts of the exam. I felt a pit in my stomach as she flipped through my blood tests one more time, because I knew she was about to shatter my world with her next words:

“It’s Lyme disease.”

When I’d been diagnosed with PANS in 2014, I’d immediately felt a tremendous sense of relief and gratitude that, after eight years of misdiagnosis, I’d finally learned what was wrong with me. But when I was diagnosed with Lyme disease on that fateful afternoon two years later, I wanted to run right out the door of the exam room, get back on a plane, and pretend the whole day had never happened.

How could I accept yet another life-altering diagnosis?

A long time ago, I’d made peace that life was unfair, so it wasn’t that I was angry at God or the universe or even the tick that bit me. No, I was angry that it took ten years from the time I first noticed Lyme-like symptoms to me getting a diagnosis. Some Lyme and PANS symptoms are identical, so what if I’d never had PANS at all, and it turned out I was misdiagnosed for an entire decade?  Or, because PANS is triggered by infections, what if I could’ve recovered without the many PANS-specific treatments that hadn’t been enough?

I was angry that my PANS doctor hadn’t tested me with the more accurate Lyme test by Igenex labs at my first visit—just the wildly unreliable CDC tests. I was angry with Igenex for forgetting to send the page of the results that showed I unequivocally had Lyme disease—which delayed my decision to schedule the Lyme consultation by four months. I was angry that I had undergone tonsillectomy surgery and incurred severe bone loss from a year of steroids, and that my parents had spent so much money on IVIG, perhaps for nothing but a misdiagnosis of PANS.

And so, although I begrudgingly complied with my new Lyme treatment plan from that day forward, I still wasn’t willing to fully accept the diagnosis. I paid lip-service by announcing it on my blog and even becoming passionate about awareness. Yet all the while, I was so angry that I remained in denial that I truly had Lyme myself.

Who wouldn’t be upset about needing thirty pills per day?

what if “Chronic Lyme” was the real misdiagnosis?

In between follow-up visits to the Lyme clinic, I looked for any piece of evidence I could gather pointing to persistent Lyme being a hoax—yet when I looked at the facts, there was no definitive refutal of its existence or of the efficacy of the methods my specialist was using. So I faithfully continued the treatments because the data suggested it was my best way forward—though my emotions insinuated I couldn’t possibly have this terrible and tragically misunderstood disease.

As time went on, it became clear that the antibiotics were helping, so I slowly learned to tolerate the diagnosis. In fact, when I was away from home working last summer, it felt freeing to come out to my colleagues about Lyme after it made me miss some days. Amazingly, I was met with nothing but support and compassion, and several people shared stories about their friends who’d recovered.

Contrarily, on the rare occasions when I’d told people about my PANS in the past, they’d never heard of it and usually just said something about how I needed to get out more or try yoga—or my personal favorite: that I should take up dance lessons to stop my involuntary movements.

I had to admit that, if my symptoms must now be labeled “Lyme disease,” I didn’t mind that some people actually recognized it was a serious illness that took more than positivity to overcome.

But the anger and confusion resurfaced last fall…

After switching to antibiotics targeted at the Lyme co-infection Bartonella, I literally lost my mind and almost flunked out of my final semester of college.  In an unprecedented decision, my Lyme specialist agreed with my PANS doctor that I needed weekly IV steroids, because the brain inflammation was definitely from my own body attacking—not from the infection itself.

And then I felt vindicated, in a twisted way, because I could at least take comfort knowing PANS wasn’t a total misdiagnosis after all—and that past treatments before my Lyme diagnosis were certainly beneficial.

Yet when IV steroids had the swift and dramatic effect of bringing me back from the brink of insanity, I forgot that the slower-acting Lyme treatments had ever helped me at all.  And I questioned how suppressing my immune system with steroids could’ve made me better if I had any infections. And if I didn’t have an infection, I was furious that the “unnecessary” antibiotics had caused the PANS relapse. (Meanwhile, I ignored how my Lyme nurse said the Rifampin antibiotic triggered my immune system precisely because I had such a huge Bartonella problem.)

Despite my silent skepticism and anger about my Lyme diagnosis, I continued the protocols, and I returned for another follow-up this week. The upshot was that I’d made a lot of progress over the last year and-a-half, but I still had a long way to go in my physical recovery.  Even so, thanks to the encouragement and reassurance from my specialist and what happened next, I went home just a little more whole…

something strange took place in the waiting room.

It was an unusually busy afternoon, so the office was packed.  I sat in the lobby for forty-five minutes after my appointment, while my mom, who was diagnosed last fall, had hers. All of us patients began to chat with each other, and before I knew it, I’d been sucked into an impromptu support group. We told our stories. We discussed our treatments. We ranted about clueless doctors. We shared phone numbers and blog links and hugs.

Even though I’ve been an active member of the online Lyme community ever since I was diagnosed, it was powerful to speak in person with others who had the same challenges and feelings about their illness.

Somehow, realizing that my diagnosis made me a part of this community of strong people with similar stories made me finally accept that I, too, am fighting Lyme disease.

There’s no way to prove or disprove that I continuously had Lyme disease from the time I got sick eleven years ago. There’s no way to go back in time and send me to the Lyme specialist a decade sooner. There’s no way to know what my life would or wouldn’t have been if I’d been treated as soon as I was infected.

Indeed, I can’t change the past, and I can’t get the infection out of my body any faster right now. But I can make the best of this moment and this present day.

Yes, I’m still angry that I have Lyme disease,

But no, I’m not in denial any longer.

Knowing I have Lyme means I’m part of a huge community of angry Lyme warriors fighting the good fight, pushing back against ignorant doctors, and reclaiming our lives one day and one remedy at a time—and you can be sure that together, we’re going to win someday.

Is There Hope in the Unknown of Chronic Illness?

Three months ago, as I drove away victoriously from the IV infusion center for the ninth, and final, time that semester, I almost dared hope I’d left behind the last three years of treatments and relapses… Almost.

It was the end of my college career, and I’d just spent its entirety fighting Lyme disease and an autoimmune condition that doctors still aren’t sure how to treat—or what the long-term prognosis is. I’d not only juggled exams and papers and weird living arrangements for four and-a-half years, but I’d been battling through countless procedures and medications and appointments—always in the naive hope that my illness would soon be over. Continue reading “Is There Hope in the Unknown of Chronic Illness?”

Why PANS/PANDAS Awareness Matters: An Open Letter to Legislators

This week, legislators in Wisconsin have the opportunity to save hundreds of lives and millions of taxpayer dollars: a bill to establish an advisory educational council on PANS/PANDAS is under review.  New York is also considering similar policies, and several others including Virginia have successfully implemented them.

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

Why Therapy Isn’t Enough When You Have OCD & PANS/PANDAS

This week, I made the mistake of reading the PANDAS Wikipedia page, and now I’m boiling over:

“Treatment for children suspected of PANDAS is generally the same as standard treatments for [Tourette Syndrome] and OCD. These include therapy and medications…”
Continue reading “Why Therapy Isn’t Enough When You Have OCD & PANS/PANDAS”

Not About Symptoms: The Truth on PANS/Lyme Recovery

When people talk about PANS and Lyme recovery, I’m frustrated that it’s always in terms of symptoms. For me, it’s never about the symptoms—it’s about coming back from the dead and regaining the parts of me that were lost.

When PANS makes my immune system attack my brain, the physical effects (similar to a brain injury) give me a mental sense of losing who I am and even of being disconnected from reality.

To be honest, I’m vexed that I never seem to adequately describe what it’s like down in the abyss of PANS and Lyme, because it can’t be understood by talking about my symptoms. I want everyone to know that what happens on the inside—not only the visible symptoms—is what ultimately defines recovery for many of us.

What Happens in My Mind During a Flare?

You see, when I have a PANS relapse, as I did starting in August, it’s like someone kidnaps me from my own body. It’s as if they take out everything that makes me myself and leave behind a shell that only looks like me on the outside.

When I’m in a flare, there’s a wall separating me from everyone, as if I walk around in a semi-opaque plastic box that mutes and dims everything I try to perceive.

I’m both a puppet and a spectator of my life, mechanically going through my activities as normally as I can while not being a part of them anymore. My days mean showing up invisible and ignored at my own birthday party while watching everyone celebrate without me.

In those times, my thoughts and reasoning make sense to me, but when I have to interact with the external world, everything is confusing. No one understands what I’m trying to tell them, because I can’t find the right words to crystallize the ideas in my head when I speak. I feel like I’m on a whole other planet from everyone else, and the loneliness and lack of communication is devastating.

Sometimes, I see the ceiling and the floors dancing around, and I know I’m hallucinating, so then I wonder: what else am I seeing and feeling and experiencing that isn’t based in reality? One of the hardest parts of my flares is the sensation that I’m losing my mind while being lucid enough to realize I can’t know how far gone I am—and wondering how much farther I’ll fall.

Yet as awful as the detachment from life and reality is, the worst part is by far the psychiatric torture that results when the brain is inflamed. To have a PANS/PANDAS flare is to be forced to drink the most bitter elixir of despair, rage, and panic stirred together into a brain-crushing poison…

It makes you scream and run and pull at your hair because you’re trapped inside a mind that terrifies you—and there’s no way out. You’re afraid because you feel like a menacing outside force is in control of your body. Your thoughts are turned against you, taunting with hopeless lies and instilling irrational fears and obsessions that consume every moment. It’s so unbearable that you’re not sure how you’ll survive another minute, and you hope the PANS potion will kill you.

So much of what I experience and feel during a flare cannot be quantified objectively or understood by what everyone sees on the outside. People do tell me I look less tormented or more like myself when I get better, but they have no way of knowing the magnitude of the transformation—or the profoundness of suffering from which I’m emerging.

You can’t measure one’s sense of “self” with any blood work or symptom scale—especially if you’re asking a person whose brain and ability to process information has been compromised. By definition, I can’t accurately evaluate how ill I am while still ill. But when I’m better and back to myself, then I know.

And right now, I know.

In October, I began to come back to life after high-dose IV steroids. As I got better, I came to realize more and more how much of my personality had been stolen by this disease. My depression and anxiety were the first to subside, only hours after my first treatment, but some part of me knew I still wasn’t “right”—though I couldn’t quite identify what was wrong with me.

There was more to recovery than not having symptoms…

I hadn’t been able to socialize or do school or enjoy my hobbies, so when those things became not only possible, but natural after two more treatments, that’s when I felt I was truly healing—not just when my depression, anxiety, tics, and cognitive problems began to disappear.

Recovery wasn’t only about having fewer symptoms—it was about having more of my personality and the ability to enjoy and live my life.

Today, three months later, I feel great, but most people would say I’m nowhere near recovered: I’ve recently developed a “neurological limp” where my left foot drags behind me, and both legs give out every few steps when I walk. And I’ve started having complex vocal tics where I involuntarily utter strange (though usually hilarious) phrases against my will.

Obviously, I’m still hoping my Lyme/Bartonella treatment will knock out these remaining problems, but trust me: I’m doing far better than my symptoms might suggest.

These days, I’m enjoying being alive, I’m seeing friends, doing grad school applications, and writing my book (plus intensive outpatient therapy for my eating disorder, but that’s a whole other story).

I might seem bad on the outside, but I feel connected to reality and like I’m part of the world around me—things that were unattainable just a few months ago.  I know better than anyone else how frustrating my lack of motor control is, but I also know it pails in comparison to what I experienced in the depths of PANS.

I’ve said it many times before, and I’ll say it again: recovery is never linear. There are all sorts of ups and downs and twists and turns. I could get discouraged that I continue having serious symptoms, or I can realize that having my personality back is the biggest and best leap forward that I could’ve asked for in my recovery.

It’s not about the symptoms for me.  It’s about coming alive again.

Attacked, Trapped, Tormented: My War with PANS & Anorexia

“Do I have to take my shoes off?”

I asked my psychiatrist in a trembling voice as I stared at the floor, too ashamed to make eye contact.

My hands were shaking as I reached for my shoestrings, because I already knew the answer, and I knew what would happen the moment my doctor saw the double-digit number on the scale… Continue reading “Attacked, Trapped, Tormented: My War with PANS & Anorexia”

I Wasn’t “Sick Enough” to Have Lyme. Then 2017 Exposed a Shocking Truth…

I’ll never forget the day I first set foot in a Lyme clinic, as I watched other patients with pale, exhausted faces roll into the waiting room in wheelchairs. I’d just finished another semester of college and a ten-mile run that weekend.  I remember thinking, I can’t possibly be sick enough to have Lyme Disease.  What am I doing here?

Continue reading “I Wasn’t “Sick Enough” to Have Lyme. Then 2017 Exposed a Shocking Truth…”