I know quite a few people who have had Lyme Disease. I have seen them struggle with diagnosis and recovery. Katina Makris decided to share her very inspiring story with Lyme Disease in her book, Out of the Woods: Healing Lyme Disease - Body, Mind & Spirit. Katina is a powerful woman, a gifted writer, and healer. She is so passionate about educating the public about Lyme Disease and helping those with the disease. Here is an excerpt from her book:
The clanging of the harbor bell rings with a clarion shrill through the thickening milky fog. I bundle deeper into my plaid woolen muffler, struggling to deter the piercing Nantucket wind straight off the darkening ocean. Damp and raw, it pries so viciously.
I love Nantucket. It’s a place of haunting passages to me. It feels like I walk between the veils of the worlds out here on this oceanic island. All of it—the stretching beach sands, the romantic heather moors, the cobbled whaling village streets—throw me backward in time, propelling me into a déjà vu sensation. In fact, I often wrestle with my conscious mind out here.
Yesterday, in town, I fleetingly saw what I thought was the half turned face of my father, cloaked in a jet black, collared cape and top hat.
No, I reminded myself. He’s back home in his house on the Hudson River, not here at an oaken desk, behind a leaded glass window. It was eerie to have seen him inside that storefront.
You’re daydreaming, Kim.
In early October of 2004, I’ve come to Nantucket with Hunter on a painting commission.
My assignment is to capture four landscape scenes of a beloved family's heirloom of land and cottage, situated sweetly on a tucked away lee of the rambling heather moors. It’s one of the few old style properties left on the island, low key and understated in its simplicity and scrimshaw charm. The two-bedroom house, tiny in dimension yet raftered with family memories floating off the pages of the guest book, reminds me of my own barefooted childhood gambols collecting sand dollars and jingle shells along the still uncluttered shores of Fire Island and Martha’s Vineyard.
I head out, laden with paints and canvases, portable easel in tow, hiking up and down the moorland swales, searching and finding a nice pinnacle to paint from. The amber Indian Summer light bathes the endless swaths of russet and sienna heathers in breathtaking beauty. It’s actually quite daunting to try to portray the sensual beauty of these moors. I wrestle with two canvases well into the final weeping indigo rays of evening’s surrender. The next day I’m back again, tangled in my own attempts to capture the moors on my canvases.
By noon I’m drenched in sweat and paints, half clothed, and simultaneously euphoric and distraught, moved by the solitude and majesty of this untouched land, yet displeased with my efforts. The paintings are not as delicate as I have aimed for. Instead, they’re marked by broad strokes and even broader colors. Oh well, I think, tomorrow I’ll paint the ocean instead.
Unfortunately, while trudging back to the cottage, a splitting headache and stiff neck are rapidly mounting.
By late afternoon I’m cramped in the vise of a wicked migraine. It holds siege through the next day, which is shrouded in mists and a drizzling, raw rain. Hunter helps me ride out my pain with ice packs and meds.
By evening, I’m still sick. The headache has plastered me down pretty badly. This one is particularly fierce, zapping my energy, making my mind foggy, and leaving me feeling dizzy and fragile. Thirty-six hours into it, I’m waiting out the passing of the final stages of the siege. I lie in a zombie posture on the denim blue sofa, watching the candle flame flicker and listening to Hunter clatter pots and pans in the kitchen. I study the woodworking inlays of the cathedral ceiling, noticing the shapes and faces hidden in the whitewashed knotty pine.
Essentially, this is a happy experience here on the island in spite of the migraine and weather. Hunter and I are blissfully content alone together, reveling in the romantic solitude of this idyllic setting. We chat and loll, nibble on savories, he plowing through a novel. Outside the window we watch flocks of goldfinches dangling from the bushes and branches, gobbling up the shiny autumn berries.
The next day dawns, heavily mired in more fog. The headache lingers, though not as badly. It remains well into my final day here. I force myself to work on the commissions, sketching now, since the light is so poor. I feel incredibly weak, though, barely enough energy to walk down the drive and back. I’m unable to venture back up onto the moorland hills. I lumber home to New Hampshire, dazed and not well. The Nantucket experience lays a muzzy film on me.
The ensuing months of autumn become a living nightmare. Dizzy spells come and go. In the usual busy season of autumn winterization—garden cleanup, wood stacking, and vegetable canning—I’m suddenly incapacitated. I get my son, Eli off to school each day, then crash. Days are slipping away from me. Nothing is getting done. I’m floored by the exhaustion and relentless migraines that began in Nantucket.
My head is in a constant fog, my gut a wreck. I’m plastered on the sofa, barely able to even let the puppy out for housebreaking. I note a bruised feeling all over my body. Plus there’s this thready kind of predawn insomnia. My doctor and Neurologist both run batteries of tests, scopes, and scans. I drink barium, I’m injected with dyes. Still, I feel like hell, like I’m breaking apart. Labs return: no Epstein-Barr, no Lyme disease, no thyroid disease.
I crash at home, propped up on tranquilizers, and feeling as stunned as a bird who has hit a window. I’m too weak to drive, sleep is raggedy, and my head spins. My blood sugar feels like it’s constantly plummeting; I feel jittery and starving, and have anxiety rushes that only a solid protein meal can assuage. My metabolism has gone way out of whack. Suddenly, I’m packing on weight in a way I never have before. I keep harping to the doctors that something is ransacking my own chemistry. “Check my thyroid, my adrenals, my pancreas,” I beseech.
Days run into nights, nights into days, with me falling down a dark elevator shaft of despair. I’m racked with a weird vibrating feeling in my body and a high pitched buzz in my head. No one else can hear it when I quiz them. Burning, knifelike stomach pains, bloaty, gassy expansions, and bizarre three a.m. ravenous hunger pangs are intense. My GI tract is a mess.
After the scans and cultures and blood tests mount, all that can be determined is that I have some mild digestive flora deficiencies and perhaps a PH imbalance leaning toward the acidic. “Everything else is fine, Kim,” Malcolm, my GP, and the experts proclaim. “It must be a virus.”
I’m confused by these medical explorations. Suspecting a malfunction in my gut, I end up following my own instincts and holistic understandings and attempt to soothe these persistent discomforts on my own. Graham crackers, a banana, a small yogurt, pro-biotic capsules, and ginger tea faithfully make their way to my bedside table. I nibble on the crackers, down my tablets and sip my tea as Eli and puppy Lucky, clamor on board for bedtime books. My head feels heavy lidded, obtuse, and waterlogged. With trembling hands I turn the pages of “Go, Dog, Go.” Eli and I nestle together, his stuffed animal and Lucky between us, as I weave through the twenty-one pages once again. In these blissful moments I swallow hard. This is my one spell of comfort in the long slavish days of illness.
Why can’t the doctors give me any answers other than a suspect virus?
I lie flat as a railway bed for month after month, throughout the humid summer of 2005.
Too weak to lift my head for more than a few minutes at a time, I manage being vertical for only the most directed necessities: a trip to the bathroom, sitting up to eat, changing my clothes. The air conditioners drone, the house lays still, like a lion lounging in the heat of the African plains.
Outside the silent windows, I see the sun blazing, the hollyhocks climbing, the heat mounting.
All I can manage is a rotation of position, from left side to right and then over supine onto my back. Faithfully, each day, I force myself out of my bed and pajamas. If I linger too long in either, my spirits flag so deeply into a plummeting trench of despair and fear that it’s close to impossible to fathom a return to wellness.
I teeter under the weight of the cloying, South Atlantic summer blown north. The journey from my front door to the car has never felt so long. When we finally arrive, the nutritionist’s office is cheerful and clean, bathed in soothing sea foam green and white. Unlike the fluorescent glare of many waiting rooms before this, the lighting here is soft and inviting. There is even an enormous philodendron, which stretches its broad green leaves wide in welcome. “I can tell you the exact day this whole thing started,” I begin. June 21, 2000. My life and health has deteriorated ever since.”
Dr. Scott Worthington asks what happened and I launch into the entire drama. He is all eyes and ears, asking me a few specific questions along the way. “How does temperature affect you? When did the numbing palsy-like symptoms start? Are you retaining fluids?” After about 25 minutes of case intake, Scott makes a confident pronouncement: “I believe this is an advanced case of Lyme disease that has never been treated.”
“What? It can’t be, I’ve been tested three times and all the results have come back negative. ”
“The commercial lab Western Blot is an inaccurate test,” he explains, “particularly in old cases of Lyme disease. It’s even sketchy in new cases, with a 54 percent error rate. There’s a short window of opportunity for just a few months when you can get fairly accurate findings with it, but even then, many early cases are missed, too. We need to run some newer, more improved tests.”
I am astonished to learn that they have diagnosed hundreds of missed cases in the past three to four years, cases that have been mistaken for Lupus, MS, Fibromyalgia, Parkinson’s, Chronic Fatigue, arrhythmia, all sorts of conditions.
“Lyme can show up as muscular-skeletal pain and inflammation. It can hit the GI tract. It can be neurological and cause Bell’s palsy, vertigo, foot drop, or Parkinson’s-like symptoms. It can attack the heart and its valves. With some people it doesn’t show any physicals and it goes right to the brain and neurological system, creating anxiety, depression, bipolar, or dementia.”
“What a mess,” I stammer, suddenly aware of how much worse things could have gotten.
Scott goes on describing this slippery, often-changing illness. He says that many cases are misdiagnosed or undiagnosed altogether. He considers Lyme to be the epidemic of the 21st century, akin to the Polio outbreaks fifty or sixty years ago.
I take it all in, nodding in concurrence and a bit of shock.
How many zillions of prior tests have I been subjected to? I wonder. I pray that this one holds the answer. Into the protective Styrofoam container my blood goes, padded with ice packs and my paperwork. A week later, we journey back to Scott’s office, he delivers the results.
“The markers show you are at the very top of the positive range,” he says. “You have a full-blown case of Lyme disease. I’ve never seen a more definitive result.”
My heart is pounding in my chest and I feel a sweat break out on the back of my neck.
There it is in black and white. Scott explains that I’m infected by the organism called Borrelia Bufidosis Burgdorfen, the primary culprit in Lyme disease. We carefully go over my other laboratory findings. I learn about the damage that has been done to my immune and nervous systems, as well as to my gut. The Lyme has run rampant within me for at least five years, maybe longer. The ugly fact is that Borrelia is a virulent bacterium that replicates itself in cyclical fashion. Periods of dormancy can occur, during which time symptoms subside; but then periods of outbreak erupt once again. This spirochete organism burrows itself way into the tissues and cells of the body. Most experts consider it to be even stronger and more difficult to eradicate than syphilis, to which it is related.
“It’s a nasty bug,” Scott says. It’s an understatement.
I’m crying, clutching Hunter’s hand.
“OH my god, Scott! Thank you truly. Now there can be an end to this nightmare.”
“Let’s work on getting you well,” Scott says.
For more information: http://www.outofthewoodsbook.com/