When Your Illness Flares When You Least Expect It With PANS

Four 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 a brain-attacking autoimmune condition called pediatric acute-onset neuropsychiatric syndrome (PANS), 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 illnesses would soon be over.

Yet PANS always returns when I least expect.

Last August, I’d been enjoying a steady time of health, having completed a summer internship and preparing to coast my way through graduation. But then, out of nowhere, my immune system attacked my brain once again, and before I knew it, PANS had kidnapped me from my own body. All of a sudden, my illness held my personality and my intellectual capability as hostages, demanding a new and stronger treatment as a ransom.

And so, my neurologist put me on IV steroids for the rest of the semester, and off I went to the infusion center each week. Slowly, my cognitive abilities returned, and against all odds, I graduated in December.

I was even more amazed when I began getting back parts of me that I had no idea I’d lost to my disease—my sense of humor, my hobbies, my curiosity, and my love for living.

In fact, after the steroids, I was doing so well, that for the first time in nearly two years, I started to let myself dream about my future, because it finally seemed like PANS was in my past once and for all.

And then came last Monday.

Out of nowhere that afternoon, my thoughts began to spin. The tell-tale despair-rage-panic feeling that I knew could only be PANS pierced through my brain like a dagger, permanently marring that day into a nightmare.

I knew I was having a panic attack—a classic PANS symptom—but I figured if I took some Ativan and Advil, I could keep the worst of my disease at bay. Maybe it was just a fluke. Maybe I’d wake up tomorrow as if nothing had happened.

Yet with each day that went by last week, I fell farther and farther and farther into the nightmare. By Thursday, I was curled up in a fetal position all day, in complete and utter psychiatric torment created by the uncontrolled inflammation in my brain. I existed in a nothingness, in which doing anything at all was exhausting and torturous. The sofa moved as the walls danced side to side, and the pillows dragged themselves across the floor—hallucinations that proved my immune system had set an inferno to my neurons.

And then the doorbell rang.

Just as I was sure I couldn’t take the autoimmune agony anymore, on Friday morning, a nurse showed up at my doorstep, hooked me up to an IV, and dripped another 1000mg of Solumedrol through my veins—just like at the infusion center last fall.

Less than an hour after the treatment, a dark cloud lifted off my psyche; the bone-crushing obsessions and irrational terror ended. It was as if the whole episode never happened. My symptoms completely abated.

Sometimes, when I get better from a flare-up, I’m so relieved that I feel nothing but gratitude. Other times, like this one, I’m overcome with anger.

For unknown reasons, although PANS seemed to be in my past until this week, I’ve been getting physically sicker and sicker in other ways ever since I graduated in December.

These days, if I go out for errands or to meet up with my friends for too many hours at once, I end up in bed for days afterward. My hands are constantly swollen. I ran half-marathons last fall but now can barely run at all. Is my Lyme getting worse? Are the antibiotics making me sicker? Have I picked up another infection?  No one really knows.

I’m so angry that despite doing everything I can to be healthy, I continue to get sicker—and had yet another PANS flare this week. On the surface, some people might think I’d be the healthiest person alive. I sleep nine hours each night. I take a walk every day. I eat a whole-foods diet. I go to therapy. I avoid stress as much as possible. I live in a new-ish house, free from toxic mold and pests that could aggravate my conditions. I’ve been treating my Lyme disease under the guidance of another expert for over a year.

So what the @#$% am I doing wrong?

Lately, I’ve lain awake in bed, feeling my heart thump through my chest. “Why?” the word falls from my lips, like a curse under my breath.

Yet despite my illness and my worst intentions, the life force continues to flow through me with every heartbeat and every respiration. On those nights, a lonely tear streams down my face, because I realize that my body isn’t ready to give up yet—and neither can I.

The truth is that there are far more questions than answers in our existence. There are many more mysteries than certainties—both in relationship to our health and in our relationship to the universe. There’s no simple solution to anything, and especially not to healing the two all-consuming diseases that I have.

As I feel my pulse right now, I’m taking a breath, because I know my body is saying I still have a life to live—even if my illness makes it nothing like the one I want right now. Flare-ups like this week’s may remind me of the fragility of my own body, but they’re also a testament to the strength possessed deep within.

I will never find all the answers, and I fear every day that I’ll never be cured. Even so, as long as I have a heartbeat, I will keep searching, and I will keep fighting. Now is not the time to give up—it’s the time to keep living and trying, one tremulous breath at a time.