by Amy B. Scher
But I never became a two; not even close.
After months of no improvement, Dr. Ourm had a possible solution. He offered me an experimental treatment with great promise, called intravenous immunoglobulin, or IVIG. Ironically, I’d find out one day that this is used to treat Lyme disease too—but at this time, it was still years before Lyme would enter my Universe.
IVIG is a human blood product pooled from thousands of healthy donors, scrubbed down to its purest form, and infused into the body through a port that’s inserted in the arm and leads directly to the heart. IVIG neutralizes the problematic antibodies in the bloodstream and, therefore, mellows many raging autoimmune diseases. This would, we hoped, prevent my body from attacking my nerves. There were miracle stories on the Internet about how it helped people to walk again, eased their pain, and returned them to a normal life.
A week later I had the surgery to insert the port required to deliver the treatment. A week after that, I started.
For three months, five days a week and eight hours a day, I sat attached to an IV pole in Dr. Ourm’s office, hooked up to what Jay and I called the “maybe-miracle.” Jay was in between jobs at the time, so I was lucky to have him as my loyal infusion companion. He packed us a bag full of things to help pass the time: playing cards, snacks, my beloved Golden Girls DVDs, and a laptop loaded with movies. At lunchtime, he would often visit three different restaurants to pick up my favorites from each.
It was after each infusion that I would find myself curled up into a fetal position, my body seizing with pain, fever, and agony. Dr. Ourm was always as happy about that reaction as Dr. Ashish is with my reaction now, because this was an indication that the treatment was working. My immune system was kicking into high gear and my nerves were being repaired.
You probably already guessed that the IVIG treatment didn’t turn out to be the cure. But it did do something, at least. I no longer kicked involuntarily due to muscle spasms and even occasionally had the strength to kick on purpose. Sometimes I was only a seven or an eight on the pain chart. But I was simultaneously going downhill. I developed labored breathing, severely low blood counts, and worsening overall fatigue; impossible to tell whether these were side effects of the IVIG, or of the steroids they gave to control the side effects, or were a brand-new issue of concern. Dr. Ourm sadly admitted defeat and stopped the treatment.
Luckily, the stem cell–induced reaction that has me coiled up into full fetal pose turns out to be much more temporary than in my IVIG days, when every symptom became a new long-standing issue. By the morning after my mega stem cell dose, I am back to my “normal” self, and ready for our New Year’s Eve celebration just a few days later. Thank Ganesha!
Because my good Jewish parents can’t bear the thought of anyone being alone in their room eating hospital food on a holiday, we have planned a New Year’s Eve group dinner in the lobby for all the patients.
Despite the angry thunderstorms that are rattling and lighting up the skies, they insist on venturing out into the flooded city to pick up food for all of us from the Big Chill restaurant—the most American eatery we’ve found in Delhi. It’s located in upscale Khan Market, a thirty-minute tuk-tuk ride from the hospital. Their menu includes everything we miss from home: pizza, pasta, salads, and a tuna melt that I have started to live for. As much as I’m warming to Indian food (so much so that I’m gaining weight from it), it’s still no buttery, cheesy, pressed gooey sandwich from the Big Chill.
Mom and Dad are gone for almost two hours while the rest of us sit in the lobby trying not to starve, or to worry that they’ve been swallowed by the storm. When they finally make it back to the hospital, they are buried in the tuk-tuk, bags of food looped around every shoulder, elbow, and wrist. I run out, covering my head with the hood on my sweatshirt, and help them bring in the goods. They are soaked all the way through as if they have willingly offered themselves up to the hungry monsoon. Apparently it was an arduous tuk-tuk ride through holiday traffic and puddles of rain higher than the tires. Any adventure out into the city is enough in the light of day, let alone on a dark, stormy, busy night.
When the driver realizes they are delivering food to a hospital full of patients, he won’t take money for the ride. During the holidays, it seems that the space between humans is less and we’re all more the same than different. Tonight is all about the goodness that exists, no matter who you are or where you’re from.
My dad tips him twice as much as the ride itself cost for his kind gesture, and we all wave good-bye as he floats back out into the street. I have always known I have the coolest, most generous and selfless parents in the world. But in this moment, drenched and still fully smiling, they are really showing it off.
We dig into the spaghetti Bolognese (with real marinara sauce and no corn!), fusilli chicken, rich, buttery garlic bread, and tangy Caesar salad. It is nothing less than a foodgasm. We are sixteen virtual strangers, bound by the bond of stem cells and Italian food, sitting around one long table, stuffing carbs into our faces and laughing in awe at the circumstances of our meeting. We are more than friends now, we decide; we are . . . related? I look around the room and wonder what will become of us, not individually, but as a group; as people who might never have chosen each other, save for what has brought us together here. Are these the people you meet who become part of your life forever, as familiar as your siblings and childhood playmates? Or are these the people you match up with only temporarily, when you are all suspended together in the same place, on your way to somewhere else?
The stories circle around the room, all of us getting to know each other more deeply than a passing “hi” in physio or an afternoon tea in the lobby.
A young mother from London proudly reenacts how her two-year-old spoke a complete sentence over the phone that day: “I miss you, Mummy!” She is at the hospital healing from an autoimmune disease that’s threatening her life.
A retired police officer from New York is here to restore function in his lower body after an accident left him a paraplegic. He gives us an important tip on how to get out of a speeding ticket: first rule—always admit your mistake; and second rule—always apologize.
It is an early 9 p.m. when we end the night with a toast and New York–style cheesecake. Our New Year’s Eve party has been full of joy and laughter, but that doesn’t change the fact that we are in a hospital and all have to get up for physio early tomorrow. There is none of the pressure of New Year’s Eves past: who to kiss at midnight, or how we’ll get home safely after a night of drinking. We’re already sober and at home—score!
Mom and Dad head back to their bed-and-breakfast and me to my room, but I am wide awake, thanks to the celebrating city and maybe too much sugar from these past few days of party food. I hear fireworks beginning already, but I can only see muted sparks of color through the polluted night sky, and a hint of the brightly lit temple down the street.
I hear the street guru on his megaphone somewhere nearby, hollering his prayer. It echoes through the alleys, around the corners, and back to my room. I soak it up, take it in, and let it reverberate through me. I wonder if it is a special prayer for this special night. He is never out this late. His voice is easily one of my favorite things in this city, a stark contrast to the loud, fast, and erratic noises that siphon out any moments of peace. I feel his slow, steady tone with me long after his prayers fade out of my reach.
As the last few hours of 2007 quickly close in, I realize there isn’t going to be a year quite like this one ever again.
It was only nine months earlier that Jay and I were officially over and I was back living with my parents. They had moved from our childhood home up to Northern California among the majestic auburn-colored redwoods and crisp, clean air.
My home might have changed, but the search for my health continued.
Among my recent lab tests, a toxicology report had shown that I had dangerously high levels of benzene in my system. Benzene is a carcinogenic substance that is found in cru
de oil. How that got into my body is just another mystery on my list of WTFs.
The toxicologist recommended hyperbaric oxygen treatment, which involves breathing pure oxygen in a pressurized environment. Infusing a patient with pure oxygen can help kill infections, clear toxins, and enhance the immune system. It is a well-established treatment for decompression sickness from scuba diving, as well as for serious infections and wounds that won’t heal.
I needed twenty sessions at $300 each, and insurance didn’t cover it. “We’ve really got to get this stuff out of you,” the toxicologist stressed, as he wiped tears from my cheeks.
Two weeks later and 229 miles from my new home, I found myself sitting with the director of the hyperbaric clinic in Chico, California, seeking another treatment and chasing another cure. Mitch was in his sixties, well dressed, never without a bow tie, and the caring heart behind this treatment center.
I found a place to live nearby, an apartment stuck in the seventies, with shag carpet and dreary cream-colored paint. The cost of the apartment and the treatment swallowed up all my monthly state disability allowance and, as usual, a lot of Mom and Dad’s bank account too. This new life was far from the airy three-bedroom house I’d shared with Jay, and even more deflating than being an adult living with my parents.
Every day I drove to the treatment center and climbed into a large metal pressurized oxygen tank with five other patients, each of us wearing a clear hood as if we were part of a hazmat team in a sci-fi movie. Large tubes extended from these hoods and connected us to the tank. For two hours each day, our bodies drank in 100 percent pure O2.
At first, I felt nothing terribly abnormal for me, only mildly dizzy and majorly nauseated. But it was during the third treatment that things changed. On the third day, I went into the tank feeling my normal version of crappy and came out almost unable to move even a single joint. Every part of my body was inflamed, pulsating, and excruciatingly tender to the touch. I had developed full-blown arthritis in all my major joints. I went from twenty-seven to eighty-seven years old in the two hours I was inside.
I hobbled back to the car and then into my dingy apartment, assuming this was just another crazy reaction from another crazy treatment. I had become desensitized to my body’s expressions of discontent. Not only did nothing worry me anymore, but nothing made me pay attention anymore either. I saw my body as uncooperative and unruly, never on my team. I planted myself on my rented couch and didn’t move all night.
“Amy, I think you have Lyme disease,” Mitch said the next day, sitting at his desk across from me, his chin wrinkled and his face somber.
But, you see, I didn’t have Lyme disease. I had seen dozens of specialists at the top institutions in the country. I had even been tested for it years before. Mitch had to be wrong.
“I was tested for it and it came back negative,” I told Mitch, opening my three-inch binder full of medical records and pointing to the results from two years earlier as proof. I carted that medical binder around to every appointment, proud that I had systematically ruled out having every disease on earth and could confirm it for any doctor who offered a new theory. I was always ready to show how far I had gone to find the truth. I pulled open the middle ring, freeing the paper that proved my point, and passed it to him over the desk.
“You got the test done at the wrong kind of lab. Testing for Lyme disease is only accurate when you get it done at a lab that specializes in tick-borne illnesses,” Mitch explained, passing it right back to me. “The response you’re having to the oxygen treatment seems like a Herxheimer reaction. This happens when a treatment kills the bacterium that causes Lyme disease, and it begins to die off rapidly in your body.”
Mitch had become an accidental expert on Lyme disease because, tragically, his son had passed away from it when he was in his twenties. But I couldn’t process any of what he was saying. I am here for benzene toxicity treatment. How can I now have an entirely new disease? And if I have it, am I going to die like Mitch’s son? I do not have Lyme, I do not have Lyme, I repeated in my head.
Yet the more I learned about Lyme, the more it sounded like me.
Borrelia burgdorferi, the bacterium that causes Lyme disease, often burrows deep within the body and can affect all the organs, glands, and systems. It not only attacks and alters the function of the immune system but also evades the very antibiotics that try to kill it. The symptoms mimic hundreds of other illnesses, which makes Lyme disease difficult to diagnose. In fact, Mitch told me that most general practitioners aren’t properly educated on it, so the signs and symptoms are often overlooked.
Many specialists on the front lines of treating Lyme believe that, if not diagnosed and treated early, it can trigger other diseases—multiple sclerosis, Lou Gehrig’s disease (ALS), and Parkinson’s disease. To complicate matters even more, Lyme disease is entrenched in a political firestorm, with doctors disagreeing on testing methods and treatment protocols, and insurance companies refusing to pay for much of the necessary treatment. There is no sure way to treat it; everything is experimental and everyone is shooting in the dark.
I do not have Lyme, I do not have Lyme, I continued, but now more as a prayer than anything else. Because something about me having Lyme disease rang perfectly and absolutely true. I felt it where I feel all the deepest, truest things—in my bones.
It was six weeks later, after more testing, this time from the “right” lab, that I got the truth from Dr. Harr, who was something of a cross between a surfer dude and a scientist, and one of the best Lyme disease specialists in the country.
“You have Lyme disease,” Dr. Harr said casually, as if he didn’t need a test to tell him. Mitch was right.
Finally, seven years after my very first symptoms, the ones that my doctor said were “maybe hormones” and “probably nothing,” I had arrived here. In between then and now had been tens of thousands of dollars in medical bills, endless specialists, broken relationships, failed treatments, and false hopes. But I was finally being diagnosed with what I intuitively knew was it. Some wise place within me knew this would be my very last diagnosis.
Lyme disease accounted for every mystery and symptom I’d been chasing for almost a decade. This is the jackpot moment in a chronically ill person’s life. It is when you finally find a disease that rolls off your tongue without a shred of doubt. It is the disease that you decide to marry and be loyal to after all the ones that came and went like the wind.
This diagnosis would turn out to give me all the answers I had been seeking, but also none of them at all. Because finally getting the right diagnosis was monumental, but the task of treating the disease at this late stage was even bigger. It was climbing Mount Everest, except your hiking boots are flip-flops and your flip-flops are broken.
I suddenly felt the urge to reach back into my past and take any of my old diagnoses back. I bargained with the Universe, but there was no swapping allowed.
On top of the nauseating oxygen sessions, which Dr. Harr suggested I continue, he added new treatments: heavy-duty antibiotics and dozens of supplements—pills, tinctures, and powders—all of which seemed to exacerbate my symptoms. Each day became a new kind of nightmare.
I couldn’t keep up with the pain, fatigue, detox regimens, side effects, restrictions on what felt like almost every kind of food or drink, and medication schedules (take this but not within two hours of that; take this right before bed on a full stomach; and take that three times a day along with this, but never in the same three hours as this). I had reminders and spreadsheets for what to do, and when—my day full of activities, not one of them pleasurable.
Once I was entrenched in the wild and complex world of Lyme disease, it became me—my research project, my wound, my identity. My life started to spin around this disease. Mostly because I was scared that if I took my eyes off it, it might kill me.
I backslid worse than ever before, emotionally and physically. I was devastated that this new diagnosis, which should have been the end of my h
ardships, was only the beginning. I wanted to run away, but I couldn’t even get off the couch. My parents moved into the Chico apartment’s second bedroom, taking turns helping take care of me. I painfully straddled the line between desiring my independence and being a child who could not live without her mommy and daddy.
Mom helped lift me in and out of baths full of vinegar and baking soda, trying to leach out the toxic medications and bacteria die-off from my system. The pressure of the mattress in my bedroom was too harsh for my joints, so we propped up my knees, ankles, elbows, and shoulders with pillows on the couch. She slept there with me each night while, as always, my trusty Golden Girls DVDs looped on replay. “We’re watching this again?” my mom would ask, even though she knew the answer. She waited anxiously outside the bathroom door when I couldn’t stop throwing up. She ran out to pick up fettuccini Alfredo, sometimes the only food I wanted, even though I could almost never keep it down.
Dad provided the therapy, jokes, and questionable entertainment, often reading to me from his favorite magazines—Costco Connection and Consumer Reports. I was sick as hell and didn’t know how to help myself, but I did know all about the hottest new TVs and most fuel-efficient cars on the market.
He and I were sitting on either end of the couch one evening watching Frankie and Johnny when he looked over at me with a proposition and thoughtful eyes. “Wanna try some weed to see if it helps you feel better?” he asked. My dad’s empathy poured out at all times, but most honestly in times of desperation. He usually pulls out the old records and old stories, but that night, it was an old pastime: pot.
He had his medical marijuana license, which all the cool dads have. It afforded him access to the ultra-premium, extra-stinky, grade-A bud.
When I was in high school, a few of my friends and I played hooky from school to get high. When my parents were gone for the day, we hurried into the garage and “borrowed” my dad’s prize memento from Woodstock: his ceramic bong, hand-painted with delicate flowers. I carefully carried it onto the back patio, and we all arranged ourselves in a kumbaya circle. Four mind-blowing hits later, I agonizingly watched in slow motion as the bong slipped from my friend’s hands and hit the floor, smashing into a messy pile of broken pieces.
