The Autoimmune Epidemic - Softcover

This book is about a global health epidemic that threatens to affect each and every one of us. However, the seeds for this book were sown in my own health crisis. Like 23.5 million other Americans, I suffer from autoimmune disease, and it has ravaged my life, placing before me the greatest obstacles I have ever known. Pages of this book were written during different stays in the small white hospital rooms of Johns Hopkins Hospital, and many chapters were drafted during long bedridden months at home.

The greatest of these challenges began one fine spring afternoon as I was celebrating "Carpet Day" with my daughter. Carpet Day is our own personal mother-child holiday, celebrated only by us. On the first great spring day we take an old carpet and unroll it on our suburban drive. We bring pillows, chalk, snacks, and lemonade and lie there, reading and chatting, pretending it's the beach for a whole afternoon. On Carpet Day, you can almost hear the seagulls and feel the breeze from the ocean waves that we still won't visit for months. That day, we brought our golden retriever puppy outside with us. He saw a squirrel, and off he went. I bounded after him, or tried to, only to find that my left leg wouldn't follow my right. I hurtled headlong into the grass.

Over the next seventy-two hours, my left leg, then my right, then both arms lost all muscle control as my body underwent what was -- for me -- the all-too-familiar creeping paralysis of Guillain-Barré syndrome, an autoimmune illness in which the nerve's myelin sheaths are destroyed by the body's own immune system.

Guillain-Barré syndrome, or GBS, usually attacks a month or so after a patient has had a common viral or bacterial infection. Just three weeks earlier, I had had a stomach bug. My body's immune fighter cells had mounted a war to eliminate those germs, but once they'd achieved that goal, instead of ceasing their attack they turned on my own body -- in a deadly game of self-sabotage. With Guillain-Barré, the immune system gets its wires dangerously crossed and while trying to fight off the infectious agent also damages the myelin sheaths that wrap around all of our nerves like a protective insulation. The damage is so rapid that a patient's myelin sheaths and the axonal nerves they protect can be methodically and painfully stripped away -- leaving them entirely paralyzed within weeks, or even days.

It was the second time in four years that I had been paralyzed with GBS. Once before, in the spring of 2001, when my son was six and my daughter two, I had developed this same bizarre and devastating disease after a stomach bug. In 2001, physicians at the local emergency room confidently misdiagnosed my leg weakness and back pain as a back injury and prescribed bed rest. But instead of improving with rest, I lost nerve and muscle control in my legs by steady degrees over a period of nearly two weeks. One day I could stand on my toes, a few days later I couldn't quite manage it. A few days after that I couldn't flex my feet. A week later, I would stand up and try not to crash into the wall, but suddenly the wall would be there to greet me.

A day or two later, I attempted to get to my two-year-old after she bloodied her toe by stubbing it on the leg of my dresser, but I couldn't make it there, even on my knees. The communiqués my brain sent to my body to feel the floor beneath my feet simply didn't connect.

One afternoon my son, then six, tried to rouse me by showing me how competent he'd become overnight at tying his shoes, as if by some magical power he could banish his mom's bizarre inability to budge from bed.

"Look, Mom!" he called to me from downstairs, near the front door where we kept our shoes. "I tied my shoes! On my own!" There was a moment's pause, and then -- making a decision to ignore the no-shoes-in-the-house rule -- he clambered up the stairs to show me his handiwork, pride widening his smile.

"Great job, buddy." I tousled his hair and smiled back, ignoring the sneaker prints trailing behind him across the bedroom rug.

"Mom?" he asked, his tone uncertain. "Can you help me tighten the loops?" He put his foot up on the side of the bed. I tried to pull at both laces to make the floppy loops smaller but my fingers weren't strong enough.

"I can't manage it at the moment, buddy," I said. His face grew ashen and tight. I tried to comfort him, repeating a made-up acronym I sometimes used to soothe my children, hoping it would do the trick again. "Remember? My love for you is very FINE -- it is Forever, Infinite, Neverending, and Everywhere you go." We lay side by side, my words all I had to embrace him with as I struggled to hide my own panic. Why was I losing muscle control in my arms as well as my legs?

Within twenty-four hours, my breathing became shallow and short. It was clear I was facing something other than a back problem. I was admitted to Hopkins, where the neurologist who took my case ordered infusions of immunoglobulin, or other people's healthy immune cells, the standard treatment for GBS. In many first-time cases, but not all, GBS paralysis is 90-percent reversible with treatment, and the myelin sheaths begin to regenerate. It is a remarkable process. If left untreated, GBS can be fatal; the paralysis spreads to the lungs, and patients require intubation -- a tube inserted into the airway to prevent them from suffocating to death. In 2001, I recovered well with immunoglobulin treatments followed by months of physical therapy. Although I was left with strange neurological bells and whistles -- jingly nerve endings, tired, locked muscles, twitchy connections -- it seemed a minuscule price to pay for being able to walk unassisted again.

I was so very fortunate.

Still, other problems emerged. I was told that I also had leucopenia, a dangerously low white blood cell count. Leucopenia and GBS came on the heels of two earlier autoimmune diagnoses that had spanned the previous fifteen years. Small-fiber sensory neuropathy, which leads to a permanent loss of some of the normal sensation in the hands and feet, and hypothyroidism, or an underactive thyroid. In addition, I suffered from vasovagal syncope, a fainting and seizure disorder caused by the heart sending incorrect signals from the brain to the vagus nerve and failing to pump enough blood through the body, "cured" by doctors surgically implanting a pacemaker when I was twenty-eight.

Still, when Guillain-Barré struck a second time in April 2005, it came as a devastating shock. You simply were not supposed to get GBS twice. If you did, your chances of regenerating your nerves went from 90 percent to -- well, no one quite knew. Toward the end of my hospital stay in the rehabilitation center, my physical medicine specialist stood at my bedside one day, patting my leg. "You might not get any better than you are right now," she warned, her voice soft for the blow. "But that doesn't mean you should give up hope."

I had no intention of giving up hope. As a child, I had watched my father suffer through a constellation of what I have since learned were autoimmune illnesses: inflammatory bowel disease, rheumatoid arthritis, and leucopenia. By the time my father was forty-two years old, he could barely walk a step without wincing with joint pain, and his bowels were continually inflamed. He died without warning one August morning following routine abdominal surgery to remove inflamed parts of his duodenum. I was twelve. It turned out that the heavy steroids his rheumatologist had prescribed for his arthritis had eaten through the sutures his stomach surgeon had sewn in, and the peritonitis that ensued caused his body to go into shock and his heart to arrest. "Normal courses of antibiotics proved unsuccessful," read his death report.

We knew so little then. Still, thirty years later, when my own frightening journey through autoimmune disease began, it seemed to me that we knew little more than we had in my father's era.

As I lay on that hospital bed with Guillain-Barré for a second time in 2005, I couldn't help but compare my father's odyssey to my own. Like him, it seemed I possessed an irrationally overexuberant immune system. I lay in a hospital bed in the same medical institution, Johns Hopkins, one ward over from where my father had died from autoimmune-related complications at almost the very same age I was now. With a young son and daughter at home yet to raise, the similarities terrified me.

Back home, physical therapy, meditation, and an autoimmune-preventive diet all helped to bring incremental gains in mobility. I would later come to think of that time as a five-month journey around my room, often accompanied by my physical therapist at my side, as I sweated to graduate from wheelchair to walker to cane -- with no guarantee that I would improve. As one doctor explained, "You've had several forest fires, and each time it's harder and harder to get healthy regrowth." It was the second time in four years that my work as a journalist came to a sudden halt. Deadline after deadline passed. I was simply too weak to sit in front of a computer, let alone tap out words on the keyboard. I tried to get to the bathroom one night on my own, using my walker, without waking my husband to help steady me, but misjudged my stamina. On the way back I crashed into a window and fell in a heap on the floor, unable to get up on so much as one elbow. When you hear the phrase "and he scraped her up off the floor" and wonder what that really means, it means exactly what my husband did that night. He sat up and called my name out in confusion: where were my cries coming from? When he found me beneath the window he picked me up and laid me back in bed. We lay side by side, both too close to tears to risk words.

A few moments later, our son, ten then, crept silently into our room, having heard the commotion. He laid his head down in the dark beside me, his arm circling my waist from behind.

"Mom?" he said, his voice questioning, as he grasped my hand.

I tried to hide my wet eyes and clear my voice.

He pressed his face into the back o...