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  Lyme

  Lyme

  THE FIRST EPIDEMIC OF CLIMATE CHANGE

  Mary Beth Pfeiffer

  Washington | Covelo | London

  Copyright © 2018 Mary Beth Pfeiffer

  All rights reserved under International and Pan-American Copyright Conventions. No part of this book may be reproduced in any form or by any means without permission in writing from the publisher: Island Press, 2000 M Street NW, Suite 650, Washington, DC 20036.

  ISLAND PRESS is a trademark of the Center for Resource Economics.

  Library of Congress Control Number: 2017958888

  All Island Press books are printed on environmentally responsible materials.

  Manufactured in the United States of America

  10 9 8 7 6 5 4 3 2 1

  Keywords: Borrelia burgdorferi, bull’s-eye rash, babesiosis, chronic Lyme, climate change, Ixodes ticks, Centers for Disease Control and Prevention (CDC), Bartonella, vector-borne disease, Infectious Diseases Society of America (IDSA)

  To my mom

  Kind, strong, joyful

  Contents

  * * *

  Acknowledgments

  Introduction

  Chapter 1: Ticks, Rising

  Chapter 2: “Invisible Assassin”

  Chapter 3: An Ancient Bug Revives

  Chapter 4: A Disease, Minimized

  Chapter 5: “Little Armored Tanks”

  Chapter 6: Faulty Tests

  Chapter 7: An Indestructible Pathogen?

  Chapter 8: Not Just Lyme

  Chapter 9: Childhood Lost

  Chapter 10: Lyme Takes Flight

  Chapter 11: A Lyme-Free World

  Selected References

  Index

  Acknowledgments

  * * *

  This book was a journey led by science and aided by scientists. I thank them, some named in these pages, many not, for sharing and explaining their work. I thank them for their commitment. Science that is supported, challenged, and considered will ultimately unravel the mystery of Lyme and its related diseases.

  I thank the physicians, in North America, Europe, and Australia, who gave me their time, made connections for me, and explained their diagnostic and treatment quandaries. Thanks also to the advocacy groups, in towns, states, provinces, and nations, which are trying to redefine this disease and have supported my efforts. A great many people in this large and growing community have helped me understand what the bite of an infected tick meant for them, their children, and their families. They include Julia’s father, Enrico Bruzzese, and Niki’s and Keara’s mother, Kaethe Mitchell. They include Lyme patients, and their parents, in many states and several countries. I thank them for their time, their stories told in long missives or conversation, and their willingness to provide ever more details and documents. Sometimes, as they and more than a few scientists and physicians will see, all that effort amounted to a single sentence or a pregnant paragraph. But it helped tell the story.

  Closer to home, thanks to my husband, Rob Miraldi, who set many things aside to support me in the intensive research and writing process. He made dinners, did laundry, paid bills, but, most of all, listened with the ear of a journalism professor whose mentorship and guidance has long made me a better reporter. Thank you to my children, Sara and Robert, and their spouses, Quinn and Kelsey. They cheered me on at every stage. And, of course, there is my mother, Helen, still going strong and living across the lane from me. I cherish her company and her indignation, which on this subject is considerable.

  Thanks to my friends. Janet Graham Gottlieb helped me figure things out in the telling of this story. Raedel Silverman, Kathleen Norton McNulty, and Carolyn Hansen asked good questions. Thanks to my two Dutch sisters, Marianne and Susanne Peters, for translation help and for putting me up, not once but twice, during my research. Thanks to Bob Silverman and Ronnie Liadis for accommodating my research diversions in Cyprus and elsewhere; to Bob and Lisa Brayman for their kindness and encouragement.

  I have been blessed with editors who have supported my investigative reporting for the last twenty-five years. Stuart Shinske edited and encouraged the series of articles, published from 2012 to 2015, that led to this book. He and Poughkeepsie Journal publisher Barry Rothfeld gave me the time and support that investigative reporting demands. Thanks, too, to Mimi McAndrew, who early on charted my path. I would not be a journalist but for Mimi.

  Among many others who helped, I thank Jill and Ira Auerbach, Lorraine Johnson, Dorothy Leland, Pat Smith, Barbara Buchman, Holly Ahern, Jane Marke, Kris Newby, Kenneth Liegner, Betty Maloney, Rosalie Greenberg, Phyllis Freeman, Chris Fisk, Lonnie Marcum, Fred Verdult, Diana Uitdenbogerd, Katherina Deutsch, Eoin Healy, Sandra Pearson, Michael Cook, Elliot Cowton, Caroline Fife, Rona Cherry, Dana Parish, Andre Efftink, Joy and Kim Collins, and others too numerous to name. Government agencies and their various staff members helped too: The National Institute of Public Health and Environment in the Netherlands, Public Health England, the Public Health Agency of Canada, the US Centers for Disease Control and Prevention, and the US Geological Survey. Thanks to Cary Institute of Ecosystem Studies and Wageningen University in the Netherlands.

  To my assistant, Sara McBride: Bless you. To my editor, Emily Turner, thank you for believing in this project and for your direction. To my agent, Rob Wilson, for all your efforts on my behalf, this time and for my previous book, thank you.

  Finally, I am grateful to the Internet. How strange is that? It made the world a smaller place, one in which I could, in a single day, speak with people on three continents, access a couple of dozen scientific papers, and check facts that would’ve taken far longer to look up not too long ago. Through digital communication, I made friends in other countries. I learned that they are like the people I know here in the United States. They are searching for answers. For all they gave me—of themselves and their pain—I hope to show my sincere gratitude by helping to provide some.

  —Mary Beth Pfeiffer, Stone Ridge, New York

  Introduction

  * * *

  On
the day after Christmas in 2015, I took a walk with my thirty-year-old son in an old cornfield that long ago morphed, with changing patterns of agriculture, into a gently tended meadow we know well. This nine-acre patch of earth, across the dead-end lane from our home in upstate New York, has a rare and wonderful feature that we have worked, with the cooperation of neighbors, to sustain: a mowed trail around its perimeter that allows access even when summer mustard, milkweed, and goldenrod are four feet high and the blackberry brambles profuse.

  As we often do, we took with us that day a coterie of mismatched family dogs—a Shih tzu, Chihuahua, springer spaniel, and a beige rescue that we call a boxer.

  The day was unusually balmy in the last week of a year that had gone down as the warmest in 135 years of weather history, followed only—but considerably—by the year before. The temperature had topped out at 55 degrees Fahrenheit that December 26th; it had reached into the mid-60s on Christmas and hit 72 in nearby Poughkeepsie the day before. For that time of year, daytime temperatures at or near freezing would have been far more typical here in the Hudson Valley, a hundred miles north of New York City. Instead, it had been so warm that forsythia buds had sprouted in one neighbor’s garden; crocuses peaked through in another’s.

  When we came back from our short walk, we did what has become in New York State a routine practice from spring through fall, but not for winter. We checked the dogs for ticks. When we were done, we had picked twenty-one blacklegged ticks from the scruffs of our pups, each about the size of a small freckle, and all with one goal in mind: to latch onto a warm body and suck its blood.

  When I moved to this rural county in upstate New York thirty years ago, such things did not happen. Ticks certainly did not show up in December, were indeed rare, and, if seen, were usually of the easier-to-spot dog tick variety, which infrequently carried Rocky Mountain spotted fever. They did not pack the potential arsenal of infection of the small, ubiquitous blacklegged ticks of today. Every year, the list of diseases found within this tick grows longer, including new bacterial, viral, and parasitic pathogens.

  These infections have changed daily life in the county in which I live, and they have altered the course of many lives, particularly when they go unrecognized for weeks or months. Mention Lyme disease at a gathering here and nearly everyone has a story. The odd rash, fever, occasional palsy, meningitis, and joint pain of early stages. The sometimes-crippling arthritis, memory loss, depression, numbness, and fatigue of advanced disease.

  Even the rare infection that can kill. In towns near me, Lyme carditis, in which the bacterium quickly cripples the heart, claimed a seventeen-year-old high school boy and a thirty-eight-year-old father of three within five months. A woman, who at ninety-one was an active gardener, died after being bitten by a tick and contracting another common tick-borne disease, babesiosis.

  Blacklegged ticks have taken up residence in half of continental America’s counties, spreading west, north, and south from the Connecticut town for which Lyme disease was named in the late 1970s, like some unchecked algal bloom. These eight-legged arachnids have turned childhood from a time to explore nature to a time to fear it. My seven-year-old grandson has been warned since he could walk: Don’t brush up against the tall grasses at the edge of the trail. Don’t venture into the weeds. Tuck socks into pants. Sit still for repellent. Check yourself, and remind Mommy to also.

  Then, pray we see the tick, and pity the parent who doesn’t know to look. Guidance counselors and teachers have told me of children, the most frequently infected, missing months, sometimes years, of school because the tick went unseen or the symptoms were misconstrued. But happenstance is not the only reason that cases are missed or treatment delayed, I have learned. Many patients have suffered needlessly, in the United States, Canada, England, France, Germany, and many other countries, because of how Lyme disease has been framed in American medical journals and treatment guidelines. This is an illness that has been minimized, underestimated, and politicized to the point that doctors fear treating it aggressively with a cheap, common drug: antibiotics.

  I began to write about Lyme disease as an investigative reporter for a Dutchess County, New York, newspaper in 2012. I intended to write one or two stories about a prevalent local disease, focusing on its origins, growth, and management by health officials. But Lyme disease proved to be a story far beyond the parameters I’d envisioned. Over a period of four years, I studied the policies, paper trail, and scientific literature. I tested the postulates of patients and their advocates. Many of their assertions, I concluded, were true.

  Decades-old testing protocols failed to diagnose many people with the disease. The risk of overtesting—and falsely diagnosing people with Lyme disease—was exaggerated at the expense of cases missed and symptoms dismissed. Official figures did not reflect the epidemic’s scope and were soon revised tenfold. Human trials concluded that short-term antibiotics eradicated the bug, while animal and test-tube studies showed they didn’t.

  And then there was the politics of Lyme disease. Doctors who prescribed repeated courses of antibiotics—standard in other diseases—faced professional disciplinary charges, huge legal fees, and sometimes suspension or loss of their licenses. Research was discredited, ignored, or relegated to second-tier journals when it challenged prevailing dogma. Scientists who were invested in a benign view of Lyme disease used access to elite journals to uphold the status quo. And little money was available for treatment trials because the medical system purported to have the answers to Lyme disease care.

  And yet, some 10 to 20 percent of people infected annually with Lyme disease, estimated at 380,000 Americans in 2015, have symptoms that linger months and sometimes years after treatment. The United States Centers for Disease Control and Prevention (CDC) calls the condition Post-Treatment Lyme Disease Syndrome, and it affects multitudes of people as disease-toting ticks move around the world. Lyme disease is rife in most every country in Western Europe. It is in Russia, China, former Soviet satellite states, and though officially unrecognized, in Australia too. In one small study, half the ticks in two parks in New York City harbored the Lyme disease pathogen. In a Chicago park, Ixodes ticks, some laden with the Lyme pathogen, outnumbered every other tick carried by migrating birds in 2010; five years earlier, there were none. In a northwestern suburb of Beijing, one in twenty residents tested positive in a Chinese study that said, quite remarkably, “Underdiagnosis of early Lyme disease and physical damage at advanced stage are huge problem [sic] in this area.”

  But infected ticks haven’t just moved around. They have added layers of woe. Forty-five percent of ticks in the French Ardennes, for example, carry more than one disease; some have five. A tick-borne malaria-like illness, babesiosis, unheard of not so long ago, became a nationally reportable disease in 2011 after cases skyrocketed in some American states—and it slipped into the US blood supply, infecting premature babies and killing at least eight people. Another rapidly emerging pathogen, Borrelia miyamotoi, prevalent in the San Francisco Bay area, has upped the ante on Lyme. Tick babies, hatching by the thousands, can inherit the bug directly from mom rather than get it with its first animal blood meal. Add to this Powassan virus, which is also passed to baby ticks, transmitted within fifteen minutes of a bite, and is fatal 10 percent of the time, and anaplasmosis, a bacterial infection that is particularly dangerous for the elderly. Now consider how a tick infected with two or three of these organisms, for which a doctor may not know to look, and for which testing is not routine, can wreak havoc in a human body.

  This spreading toll of tick-borne disease is not a random act of nature. By virtue of the developed world’s lifestyle and influence—the cars, the suburban tracts and carved-up forests, the diminished biodiversity, the emissions and airplanes—we have paved the way for the first global epidemic abetted by climate change. Warming may not have caused this scourge, but it most certainly is enabling it.

  The pathogen that causes Lyme disease, Borrelia burgdorferi, has existed
in the environment for millennia, just as blacklegged ticks have long been transported on the wings of birds to new and far-flung climes. What is different is that they now survive there. We have revived and empowered a sleeping giant, the Borrelia bug, by helping to create conditions favorable to the ticks that deliver it.

  Climate change alone hasn’t done this—ticks thrive amid the mice and deer so prevalent in an attenuated, postindustrial era—but its influence in supporting ticks, the vector of human transmission, is key. Ticks have climbed latitudes like ladders; they have moved up mountains. Driven by warmer winters and earlier springs, they are predicted to move well north into Canada in coming years, just as they migrated up the Atlantic seaboard and north into Scandinavia at the close of the twentieth century.

  Lyme disease, of course, is not the only epidemic to blossom in our changing world. Illnesses carried by mosquitoes—Zika, West Nile, Chikungunya, dengue fever, malaria—are proliferating and are predicted to worsen as the globe warms. The diseases they carry today annually cause millions of illnesses in tropical countries—and in the case of malaria, nearly a half-million deaths.

  When these illnesses arrive on US shores, they capture the public imagination and lead the nightly news in a way that Lyme disease never has. Yet the Lyme toll in the United States and many developed countries is far higher—perhaps four or five million Americans infected to date—than West Nile, Zika, and all other mosquito-borne illnesses combined. And like West Nile, Lyme sometimes kills, although the numbers are largely unknown. Late-stage Lyme disease has even led to suicide, an outgrowth both of the illness and society’s regard for it.