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?”

My Disease Could Make Me Lose My Mind. Here’s How I’m Coping…

After eleven years of brain-related chronic illness, I’ve come to live in a constant state of uncertainty not only regarding my conditions, but regarding my entire life.

I never imagined I would ever get sick in the first place, let alone to then be sick for over a decade. The fact that my illness happened at all has taught me that no matter how certain you feel about your life, you can’t really know what the future holds. Continue reading “My Disease Could Make Me Lose My Mind. Here’s How I’m Coping…”

I Am Not an Illness

It was 5:00 in the morning, the day’s homework wasn’t finished, and a test that I would surely fail loomed over me. My kitchen counter-top was covered in crumbs and empty wrappers, and I’d been spinning on my stationary bike for the last three hours. My laptop was opened to my class notes, but I had a major food hangover from the 4000 calories I’d consumed just hours before. Studying was near impossible.

Continue reading “I Am Not an Illness”