A shorter version of this story was published in Yankee's July/August 2007 issue
In July of 2002, having spent an idyllic week’s vacation on one of the Elizabeth Islands off Cape Cod, I returned home. The island -- a glorious wild place marked by its ancient beech forests, its kettles ponds, its open grasslands -- is also crawling with ticks, seemingly a minor obstacle to the other and abundant gifts it offers. Within a month of my return, however, I would begin to learn a bitter lesson -- in the history, ethocs, and politics of a debilitating disease, and the mystery that has surrounded it for more than fifty years.
Like many others who visit New England's islands, I was bitten by a tick, more than once. Ten days after my return, on a very hot July day, I felt cold. I put on sweaters and heavy socks and lay down under a pile of blankets. I shivered and shook. My head pounded. My stomach registered nausea and a bizarre kind of anxiety, as if I were about to go onstage. But, more than anything, I wanted to sleep. For days, I lay in my bed, drifting in and out of sleep, shivering and sweating, aware I was sick but unable to do anything for myself. I had no interest in food. At last, I found the strength to call my doctor, who waved away my suggestion that I might have Lyme Disease, which I thought was not trivial but not really serious.
Some days later, bruises appeared on my legs, first one and then another and within another day, my entire body was covered in bruises as if I’d been dropped from a cliff. A friend, a nurse, saw the bruises on my legs and said, “You have Lyme Disease! Get yourself to a doctor right away!” How she knew, I have no idea because these did not look like the pictures of the bull’s eye rash I’d since seen in books, but my visit to my doctor resulted in blood tests and a conversation with infectious disease specialists at the Center for Disease Control (CDC) in Atlanta, Georgia. Indeed, I had Lyme Disease, and I was a rare case in that I had all four of the identifying factors the CDC requires for a confirmed case: a verified tick bite, flu symptoms, a positive blood test and the rash, known medically as erythema migrans or EM. Four weeks of doxycycline was prescribed and, when symptoms had not completely subsided, two more weeks were added.
The antibiotics immediately cleared the bruise-like rash and the fever subsided. Curious to know more, I googled “lyme disease” on my computer. A million sites came up and, to my dismay, many of them were in remarkable disagreement about almost everything about the disease. There were dozens of “lyme disease associations” to consult. Which ones were legitimate? I had no way to tell. I read about the doctor, Allen Steere, who first gave the disease its name and who later received death threats and will not make public appearances without body guards. And I read about doctors who had been hauled before their state medical boards for prescribing long-term antibiotics. I was mystified. The disease was beginning to sound like a John LeCarre novel. My journey down the information highway had left me with more questions than ever.
Some of the websites I visited, such as www.lymerage.com, appeared to be outlets for a kind of fury against the medical establishment and the insurance companies. I could relate to that. When I was diagnosed, my health insurance had expired just two weeks before. A cancer survivor, I had had a very hard time finding anyone to allow me the privilege, if you will, of paying them very high premiums in order to be covered by their policy. I was in the midst of applying to insurance companies when I received the Lyme diagnosis. And so, on the next application, I dutifully reported my past history not only with cancer but now with Lyme Disease. That application was denied, not for cancer, but for the Lyme diagnosis. What on earth did they know that I did not? I thought. "How could Lyme" -- which I thought of then as merely an achy, flulike illness -- "be worse than cancer?"
I began to get a clue when I recovered from the intensity of the symptoms and friends began inquiring about my health. When I told them that I had Lyme Disease, their faces registered concern and they would offer such comments as: “Oh, my God, my sister has Lyme and she has just recovered the use of her arm!” or perhaps a comment about someone they know who is now in a wheelchair as a result of Lyme. Others would simply ask me: “How’s your brain?” they would ask, not at all in jest, I discovered, though I have to say that, at first, I thought perhaps they were joking. Without warning or fanfare, I had entered into a strange new world. Over time, I learned to speak the language and navigate the particulars of the narrow, darkened hallways of Lyme Disease.
A friend suggested I call a woman she knew who had been deviled by Lyme Disease. Lauren Lemay sat on the deck of her Gilford, New Hampshire, home, looked out across the gentle view of the distant hills and tried to tell her Lyme story. A slender woman, Lauren did not look like the desperately ill patient I had envisioned. But she looked frail. “The day before I got sick, I ran ten miles, played nine holes of golf and then I painted the living room. I mean, that was my typical day,” Lauren recalls. Lauren, now 59, had been a long distance runner and a vegetarian for nearly 40 years. Health was her constant companion. “The next day, I woke up and I was getting ready to go teach and, I just couldn’t move, I was sick to my stomach and I was so tired, like nothing I ever remember in my life, I just wanted to sleep. I dragged myself to work, got through the day and came home and slept and slept. And I was freezing. It was a hot day and I crawled into a sleeping bag and curled up in a chair, shivering.”
That was the start of Lauren’s odyssey, six years ago. In the intervening years, she consulted 15 or 20 doctors and was diagnosed with Chronic Fatigue syndrome, Crohn’s disease, anorexia, depression, and empty nest syndrome. When she ran out of doctors in her local area, she consulted doctors at Boston’s Lahey Clinic and at Beth Israel Deaconess Medical Center, also in Boston. When there was no relief there, she continued to seek. She visited a Chinese doctor, a psychic, a Venezuelan shaman and a woman who conducted business out of a yurt in the middle of the woods in Western Massachusetts. “I was ready to try anything,” she says.
She wasted away to 94 pounds and could hardly walk. “I was so scared. I would see it in people’s faces, I’d be hanging onto my husband's arm, hanging onto the grocery cart. Me, who was always on a bike or running up a mountain. By that time, there was so much wrong with me, I felt I was dying.”
Lauren was tested for Lyme half a dozen times. The results were negative. She had no memory of a tick bite or rash but Lyme kept coming up as a possibility. Lyme blood tests are well known for both false positives and false negatives. In the spring of 2004, Lauren and her husband traveled to Philadelphia to see a doctor she had heard about. The doctor was what is known in the lyme community as “Lyme literate” or an LLMD. He gave her all kinds of tests and determined that she had an advanced case of Lyme disease. He put her on doxcycline. “I was on it a year and a half. The medication made me sick to my stomach and I had to go off it sometimes. And there are other side effects, but I’m so much better. I’m not all the way there yet but I’m back to work part-time,” she says.
Lauren was not the only Lyme patient I visited with who had wandered helplessly through the jungles of conventional and alternative medicine, seeking relief from their myriad symptoms. It turned out to be a rather common story. In my search, I came upon a book called The Widening Circle. If there is a famous Lyme disease story, it is Polly Murray’s. Published in 1996, the book tells the early history of Lyme Disease, which begins not in 1975, as is popularly thought, but in 1956, in Essex, Connecticut. Polly Murray, a newly married housewife who lived on the shore with her husband, Gil, began to experience an array of inexplicable health problems. Doctors could not find a cause. After she delivered her first child, she and Gil, moved across the Connecticut River to Old Lyme, a pastoral place with nearby views of the big river and of the Sound.
The growing Murray family enjoyed the outdoors. Polly was a gardener and the children often played in their backyard, a meadow edged in woods. A precise person, Polly kept a record of her and Gil’s complaints. By 1964, the entire family – by then they had three children – suffered constantly from rash, fever, aching and swollen joints and diarrhea. Visits to the doctor were frequent and relief was rare, if nonexistent. In fact, thumbing through the array of symptoms Polly recorded throughout the 1960s, it would seem to be the notes of a severe hypochondriac. Except that the entire family suffered these complaints.
Apparently doctors disregarded that fact. Eventually, Polly was committed to a Boston psychiatric hospital for evaluation. After two weeks of tests and observation, she was sent home with prescriptions for sleeping pills and antidepressants. But she did not stop recording all that was happening to her. And what was happening to her did not stop.
Soon, she began discovering that other people in Lyme were experiencing the same symptoms. She compared notes with another mother, Judith Mensch and in October of 1975, they called the Connecticut State Health Department to report the plethora of symptoms that had plagued them, their families and now their neighbors. Polly asked for an investigation. When she told her doctor what she had done, he was furious and accused her of “stirring up trouble.”
Nevertheless, on November 20, 1975, she went to Yale University to consult with a young doctor, Dr. Allen C. Steere, for the first time. Steere was an epidemiologist who had spent his first three years out of medical school working for the Epidemiological Intelligence Service (EIS), an arm of the Center for Disease Control. Dr. Steere showed a deep interest in her case and wanted all her notes. She also gave him the names of others she knew who were suffering from these problems. By early in 1976, Steere had recorded 39 children and 12 adults from the Lyme area who suffered from these symptoms, which he called “Lyme arthritis,” a term that was later broadened to Lyme Disease. On national television, he explained the epidemic and, to Polly’s surprise, he downplayed the severity of the illness and suggested that aspirin was a sufficient remedy. In her book, Polly wrote “I felt that he wasn’t telling the full story. Later, other Lyme arthritis patients expressed this same concern, saying that their symptoms were far more severe than researchers were telling the public.” Rather than being recognized as the hero of the story, Polly was frequently accosted by Lyme residents, irate that their town’s name was now being identified with a disease. Fear spread that real estate values would plummet. Lyme, Connecticut, had been put on the map for unwelcome reasons.
From that small circle in Lyme, Connecticut, grew an epidemic of similar stories – people with elusive symptoms, symptoms similar to Polly and her family’s, that could not be properly diagnosed. Often, people were diagnosed with other illnesses, most commonly fibromyalgia, multiple schlerosis, ALS, lupus, and sometimes Parkinson’s. The mystifying tick-borne illness was little known outside the growing number of Connecticut and Long Island shoreline communities where it was prevalent. In April 1979, a dramatic increase in the number of ticks was recorded in Lyme and the environs. The Connecticut Agricultural Experiment Station was inexplicably quoted as saying that ticks were “new to the state.” They certainly were not new to Polly and her neighbors. By then, they had been plagued by ticks and the diseases they were carrying for more than twenty years.
Polly’s experience sounded alarmingly like Lauren Lemay’s. But I had to remind myself that fifty years had passed in the meantime. I shook myself back into the present and decided to go see a tick specialist.
Kirby C. StaffordIII, PhD, the Connecticut state entomologist, sits in his office at the Connecticut Agricultural Experiment Station in New Haven, Connecticut, more than willing to talk about his favorite subject. A picture of a deer tick (ixodes scapularis also known as i. dammini or the black-legged tick), blown up to almost human proportions, adorns his wall. In magnification, the creature looks powerful and indestructible, like a prehistoric tank. It is, he tells me with almost paternal glee, “the ideal parasite.”
Stafford gestures to his overloaded shelves, his wall of filing cabinets. “Yes, this is all ticks here, lyme disease, I’ve been in it 19 years. The Polly Murray thing happened in the mid-70s. Allen Steere published his first paper in 1977 and the organism (borellia burgdorferi) itself was discovered in 1982. After that, things proceeded rapidly.” Borellia burgdorferi , a corkscrew shaped organism that spirals its way into humans from the mouths of ticks, is the cause of Lyme disease.
The mustachioed Stafford has a calm, precise demeanor and, with pens and eyeglass case stuffed into his shirt pocket, is the very picture of a dedicated scientist. He continues: “At that time, the only place in the country you could be tested for Lyme Disease was right here. Dr. Magnarelli developed the test,” Stafford says. Even as we talk, researchers in a lab near Stafford’s office are opening up envelopes and removing ticks mailed to them for analysis. Some 6,000 ticks arrive in the mail each year. Scientists grind up these ticks and test them for the spirochetal bacteria that has bored its way into hundreds of thousands of Americans and even deeper into its consciousness.
Stafford has written the Tick Management Handbook, a booklet that is distributed throughout Fairfield County. In it, he discusses ticks, the disease and other tick-borne illnesses (Rocky Mountain Spotted, Ehrlichiosis, Babesiosis, Encephalitis, Tularemia), prevention, chemical control and landscaping methods to help control ticks. “It’s not going away,” he says confidently. He could be referring to the tick but he means the disease. He shows me the map, how the disease has spread from those early days in Lyme, the concentrations now radiating like a dark stain all the way out into the Northeast. Indeed, every state in the union now has reports of Lyme disease on record. Stafford himself, though he has spent many hours working in the field, collecting ticks for study, says he has never had the disease and has been bitten only a few times. There are a number of places where Kirby and his researchers have been collecting ticks for many years, including, for many years, Polly Murray’s back yard.
“How has Lyme Disease spread?” I ask.
He shrugs. “Migrating birds. There’s no sure way to know. The movement of deer and the way people travel to tick infested areas with their pets, all that can be a factor. But it’s widely believed that birds played a role in a lot of this.”
He explains to me the life cycle of the tick, which involves at least four critical stages. “It’s like a mechanism that needs all the parts to function,” he explains.
Having thought of the tick as an indestructible tank, I suddenly think it’s a miracle that any tick survives with so many bridges to cross until they reach the final stage on the back of a moving deer. “What about reducing the number of deer?”
“We’ve been wrestling with that for a number of years. We’ve done studies and we’ve found that this can help substantially. But people get kind of exercised about hunting deer.”
“Imagine virtually eliminating Lyme in five years! I’ve been living in the epicenter of the Lyme world for four years already. We could be almost done by now.”
In her clipped British accent, Georgina Scholl, M.D., is talking about her passion: killing deer to save people. Slender, auburn-haired, dressed in linen, she's the vice chair of the Fairfield County Municipal Deer Management Alliance, a group that provides residents with a “deer hotline” and information on hired hunters. These towns, which suffer the highest incidence of Lyme disease in Connecticut, are trying everything they can to contain this epidemic. From her kitchen in Redding, Georgina looks out on a wildflower meadow that gently slopes toward woods. Outside the French doors, the turquoise waters of the family’s pool ripple in the afternoon breeze. This bucolic scene, once their paradise, is now a kind of no man’s land for herself and her family, what she calls "no child left outside."
“We moved here to be in the country. Once we bought this house, we started doing outdoor stuff. My son was 11 at the time and we built a tree house at the edge of the field and that of course is where the ticks are. And then we found out about Lyme. We had no idea.” Frustration, perhaps indignation, taint her voice. Georgina is a neurologist and her husband is an immunologist. “The problem is, we’ve got too many deer," she adds. "I presumed that was already being taken care of, I mean, why would anyone tolerate a problem that’s destroying the woodlands, causing fatal car accidents and spreading disease?”
Georgina joined the Deer Alliance and became their spokesperson. She writes articles for the local paper and she hands out posters, adorned with a Bambi image right out of Disney and busy with facts and figures about the dangers of Lyme. And deer.
Last summer, Georgina and her husband took a trip to Maine and stayed on Monhegan Island where there are no ticks. “It was wonderful to be somewhere where they weren’t,” she said.
Undoubtedly, but it wasn’t always so.
On Monhegan Island, a little rock of a place ten miles out in the ocean off the coast of Maine, (a place made famous by artists such as Winslow Homer, Fairfield Porter, Edward Hopper and Jamie Wyeth), Dr. Peter Rand and his band of researchers at the Maine Medical Center Research Institute have spent almost twenty years studying the relationship of the deer, the rats and the ticks and the correlation of the spread of the disease. “Oh, I’d love to write a book about all this,” says Rand, a handsome man in his 70s with a full head of white hair and patrician bearings. From his office behind the Maine Mall outside Portland, he loves to tell the story which, for better or worse, has been an adventure which involves trips to the island on the high seas, collecting ticks in the snow, and late night sessions around a roaring fire, talking about the future of their research. “The beauty of the island was that it was contained,” Rand says. A scientist’s dream.
For part of that time, most of then 75 full-time residents of Monhegan acted as guinea pigs, Monhegan’s little store became their makeshift clinic. “The people would come down and put their arms on the meat counter and we would draw blood,” he recalls. Dogs and cats were tested too. He sometimes felt like he was on the set of M*A*S*H. They did that for 13 years. “We found that as the years went on, up to 13% of the island’s residents had Lyme.” Rand reasons that the low number can be attributed to the fact that they spend most of their time in their houses and on their fishing boats, but the fear was that the presence of the disease would scare away visitors, who provide the island with much needed revenue. And so, after much study and furious debate, the island agreed to have all the deer on the island killed. In the fall of 2001, 113 deer were shot, killed and their carcasses were loaded onto the ferry, effectively removing the most active host of Lyme Disease from that island. And now six years later, Lyme Disease is virtually nonexistent on Monhegan Island. Dr. Rand’s study was a triumph and a watermark in the annals of Lyme Disease.
Indeed, since deer are thought to be the principle carriers of the disease, this study could provide a very strong argument to remove the herds entirely from other islands such as Martha’s Vineyard, Nantucket and Block Island, where deer and Lyme disease are rampant. But deer can swim and of what value can this be for the mainland? Even if people would agree to eliminate all deer, which seems out of the realm of any possibility, it would be virtually impossible to eradicate the entire East Coast deer herd. And were deer really the principle carriers of the disease? Kirby Stafford seemed to think it was birds. And no one can contain or eradicate birds.
And what, after all did this really have to do with people like Lauren Lemay? How could this help their struggle? It might help prevent others from getting the disease, at least a slender number of islanders, but what happens to those who are now contracting it at record rates? In some ways, it seems those newly diagnosed are no better off than Polly Murray and her children were, fifty years ago.
There are stories of the extreme effects of Lyme disease. Wyatt Sexton, a quarterback with Florida State, was arrested after he caused a disturbance running though the streets of Miami, claiming he was God. After initial charges of drunkenness and embarrassing publicity, Sexton was diagnosed with late stage Lyme disease. The mother of a UMass linebacker recently committed suicide. She said she could no longer stand living with the pain of Lyme Disease. One comment I heard more than once is that Lyme Disease does not kill you, but you wish that it would. In my travels, I visited with Rita Losee, a little fireball of a redhead who once was a nurse and a triathlete. Like so many other Lyme patients, Rita’s journey had been anything but easy. Originally bitten by a tick while hiking the Appalachian Trail, Rita was diagnosed fairly quickly but when the recommended course of antibiotics was finished, her symptoms returned. Her doctor changed her diagnosis to Chronic Fatique Syndrome. At first she believed him but then she started to do some research on her own. “I convinced my doctor to put me back on antibiotics and I started to feel better again. There were three or four times when the pain was so awful, I was within days of killing myself.” Rita is no longer an extreme athlete but now she says she is an iron woman in recovery. She is an inspirational speaker and a counselor, sensitive to psychic energy.
The mysteries of Lyme haunt her. “One of the things that really puzzles me is that so many doctors refuse to know about Lyme. I was in touch with a doctor and he and his family all had Lyme. I called him up and he said, ‘I don’t want to talk about this on the phone,’ and he invited me over. I felt like I was in a Kafka novel. I’ve never felt anything like this, the strange energy that surrounds Lyme. I asked him about it and he talked about the denial that exists around Lyme. And then he told me that there was a writer for Newsweek who started investigating and he traced it the whole thing to a little island off Long Island where the United States has a little biological factory and that this Lyme bug was an escapee.”
I knew what she meant about the “strange energy” surrounding Lyme. When I visited with Georgina Scholl and asked her to explain to me this confusing controversy, she covered my tape recorder with her hand and whispered, “Please!” And then she said, as if in mediation, “Why do we have to have this disagreement? Let’s just get rid of Lyme!” Kirby Stafford and Peter Rand both told me they would not answer questions about the “biopolitical” part of Lyme. What did they mean by that, I wondered at the time. What was there about this disease that could not be discussed? I tried but failed to think of any disease I knew of that had aspects that were hush-hush.
And then I met Marjorie Tietjen, a calm, sweet-natured woman who lives with her husband and her son in a house set in the woods of Killingworth, Connecticut. On the day that I visited, Gary and Kevin were on the roof, putting on new shingles. Margie, who has suffered from Lyme Disease since 1989, calls herself a Lyme activist. I had read her articles on the web and was impressed by her wealth of information as well as her reasonable tone. She welcomed me inside their home. Like most every other Lyme patient I had visited, she had stacks of papers and folders relating to the disease piled on the dining room table. She had her story to tell me but she also had a book she wanted to give me. Lab 257, The Disturbing Story of the Government’s Secret Plum Island Germ Laboratory by Michael Christopher Carroll (HarperCollins, 2004). I took it home with me and began to read. For anyone looking for a link between the original outbreaks of Lyme Disease and this off-limits government outpost, this book is a wealth of information and it managed to answer a lot of the questions I had about this disease and the mystery that surrounds it. Plum Island, Carroll discovered, was set up after World War II with the help of Erich Traub, a German germ warfare expert who worked in the Nazi regime. During World War II, Traub operated a germ warfare lab on an island in the Baltic Sea. Islands, it was thought, were ideal, as they are self-limiting. But this really is an illusion. Carroll points out:
“Plum Island lies in the middle of the Atlantic flyway, the bird migration highway that runs between breeding grounds and winter homes from the Caribbean to the Florida coast, up the East Coast to the icy reaches of Greenland.” In addition, deer swim back and forth between the island and the mainland. Compiling information received through the Freedom of Information Act, Carroll details the shadowy netherworld of Plum Island, which includes virus outbreaks, biological meltdowns, infected workers and contaminated raw waste being flushed into the Sound. And tick colonies bred for research on vector-borne diseases. Initially, the highest incidences of Lyme Disease were in Lyme, Connecticut, and the surrounding towns and at the tip of Long Island. On the map, Plum Island lies like an arrow, one end pointing at Lyme and the other end pointing toward Montauk. At the same time that Polly Murray and the many others in that area were beginning to experience bizarre symptoms, the germ experiments, carried out on the many animals they kept on Plum Island, were up and running. Birds, stopping on Plum Island, often flew next to either Montauk or Lyme, lured by the rich estuaries of the terminus of the Connecticut River.
As the big white ferry, New London, pushed forward into the deep waters, steel gray clouds hid the sky. The trip to Long Island takes about an hour and a half and midway on our journey, on the port side, a long, rocky island appeared, crowned with a water tower and edged with large, flat-roofed buildings. All around the shores of the island, fishing boats and pleasure crafts bobbed. Through my binoculars, I could see a large piece of earth-moving equipment, working outside one of the large buildings. I imagined the many things they might be burying. At the tip of the island, a picturesque granite based lighthouse sets like a picture on a postcard.
A nice-looking gentleman stood beside me. I pointed to the island and asked him, “What island is that?” I wanted to be sure.
“Oh,” he said, “that’s Plum Island.”
“What do they do there?” The island labs appeared like factories at the edge of the water.
“They make bioweapons.”
“Yup,” he said, “bioweapons. The government denies it but they work with bioweapons there.”
“Does everyone know that?”
“Yeah, pretty much. A lot of people work there. They might also do chemical weapons but I’m not sure about that. Bioweapons, though, yeah, absolutely, that’s certain.”
In Lab 257, Michael Christopher Carroll notes that: “Plum Island is a ticking biological time bomb. The US Department of Agriculture set the time and the clock has been ticking away for years. Today the island is more vulnerable than ever before to a germ outbreak and it remains wide open to sabotage and terrorist attack.”
Indeed. It seemed any one of us on board that day could have jumped the ship and swum ashore. I saw no one warning off the little pleasure boats so close to its shores. Plum Island is just 85 miles from New York City and around it, the highest population density in the world. Now under the auspices of the Department of Homeland Security, there is some talk that the Plum Island labs might be moved to California. That seems like a very good idea. And they have already shut down Lab 257, which hunkered like an abandoned war bunker as we chugged by. But the other labs perk along. And for Polly Murray and the thousands who have contracted Lyme Disease over the years, that would be a bit like trying to put the toothpaste back into the tube. If infected ticks escaped from that lab, or if they were released at that time, as some people believe, that act has long since done the damage and nothing can stop it now. Borelia Burgdorferi is out and about, doing its work, making people sick. Doctors are squabbling among themselves and the scurrilous are making hay off their disagreements while untold numbers of people suffer the myriad manifestations of this disease. The internet bristles with a free-for-all of misinformation and disinformation. If you read deeply of the politics of Lyme, it makes partisan politics look like child’s play. The disease disables, puts people out of work and soaks up their resources and the resources of the people on whom they depend. I certainly bore witness to that in my journey. And felt it in my own somewhat perilous situation. Of what I’ve read of bioweapons, this is actually the desired result, to disable, and therefore disable the others around you. Killing a person is quicker and much less disruptive.
So why would our country let this situation proliferate as it seems to be doing? In fact, recent guidelines issued by IDSA have narrowed the diagnostic definition of Lyme so tightly that it’s very hard for any Lyme patient to fit the profile, leaving thousands of ill people robbed of their diagnosis. The IDSA guidelines basically trivializes the disease to an ailment so simple, it can be treated with three weeks of antibiotics. And no more. If a longer protocol is needed, IDSA's conclusion is that this is not Lyme. And insurance coverage is often denied.
This is a situation that has been percolating for years, perhaps in an effort to reduce the official count of those with Lyme disease. In 2003, the state of Connecticut, which is acknowledged to be the state with the highest number of Lyme patients, stopped counting the number of Lyme disease cases. They cited budget restraints. But to the outside observer, it seems that one way to stop an epidemic is to redefine it. And curiously, they also seem to want to eliminate doctors who specialize in the treatment of Lyme. According to the Lyme Disease Association, since the early 1990s, more than 30 Lyme doctors in 10 states have been brought before state medical boards. This, of course, discourages other doctors from wanting to treat Lyme patients.
One of these is Dr. Charles Ray Jones, a 78-year-old pediatrician, who is not only the world’s foremost pediatric Lyme Disease specialist, he is virtually the only one. I’ve come to see him on a rainy Sunday afternoon in November of last year, the only day of the week he does not see patients. His patients come to this office in New Haven, just down the street from Yale Medical School, from all over the country and even the world. In addition to seeing patients all day long, sometimes until 7 in the evening, for the past year, he has been making the trip north almost every week to a Hartford courthouse, trundling into the courtroom a wheeled suitcase filled with papers regarding the case against him, which could rob him of his license to practice medicine, not to mention his life’s energy.
Nonetheless, he greets me in the courtly manner of his generation, almost bowing. In placid tones, he explains his life with Lyme, which began in 1968: “I didn’t know I was treating Lyme patients at the time. There was no such thing,” Jones says.
He began his medical practice at the Sloan-Kettering Hospital in New York City, where he worked with cancer patients. But soon, he and his wife looked to the nearby Connecticut countryside as a better place to raise their children. So, in 1968, they moved to Hamden, then a sleepy hamlet beside the Connecticut River, and set up a practice in regular pediatrics. Right away, “I started seeing children in clusters with what we thought was juvenile rheumatoid arthritis,” he says. “This was very rare. But it wasn’t really JRA. It didn’t fit the whole picture.” Interest began to develop at Yale, especially with Dr. Allen Steere. Contrary to popular belief, “The clusters were not just in Lyme. They were all around. And there were many of them. Polly was instrumental because she bugged the hell out of those guys, her family, her community. No, they didn’t like Polly. She demanded they do something about this.”
Along with Dr. Allen Steere and Dr. Eugene Shapiro, who now sits at the other end of the courtroom from Dr. Jones, they worked to solve the puzzle of this peculiar, crippling ailment. “Sure, we were colleagues at first. We were all trying to figure it out. You could say we were mired in a lack of understanding.”
For Dr. Jones, this search for understanding transformed into his specialty. He became an LLMD, Lyme literate by evolution. Dr. Allen Steere became Lyme literate in another direction, as he and Eugene Shapiro and others of their group authored the new IDSA guidelines.
“At what point did all this become contentious?” I ask.
“I was never part of that,” he says. “I heard things but I was busy. I just figured that was their problem.”
Now, it is his problem too. Jones has been treating children with Lyme, knowingly or unknowingly, for almost 40 years. Dr. Jones sits at his desk in a big, leather-bound swivel chair. On the desk are neat stacks of patient files, the patients he saw yesterday, the patients he will see tomorrow. During the trial, which he calls variously, a conspiracy, a witch hunt, an inquisition, he has had charts confiscated by the defense. “I’m considered the Great Satan,” he says with a gentle smile, “which always amuses me.” He notes: “This is not a malpractice suit. If the charges were serious, it would be malpractice.” The charges, like others of this vein, stem from a divorce where one parent does not want the child treated by Dr. Jones and the other one does. He goes so far as to label the charges “trivial.”
He gently lifts a small packet of files like something precious. He opens the top file and shows me the page, which is neatly filled with notes written in blue ink. “I don’t even know how to turn on a computer,” he says with a laugh. All his records are by hand.
In his office suite are five rooms filled with patient files, 10,000 children, all the way back to the beginning. “Seventy-five percent of them are cured,” he says. Name a patient and he’ll not only reel off their story but he will tell you, in interesting detail, what the child is like, the temperament, the emotional effect of the disease, the happy outcome. On the wall between offices, children’s faces smile out. He takes pleasure in showing me each one, detailing their struggle. And their triumph.
For his legal defense fund, almost a million dollars has been raised by the parents of his patients and, in some cases, by his patients. “This little boy,” he points to a cherub-faced youngster, “had a lemonade stand this summer and he raised $33. Another little boy, six years old, came in with 21 cents in a paper cup.”
Hundreds of these parents have crowded the Hartford courtroom in support of this aging doctor, who in any other life, would be retired. A widower of 12 years, Jones says, “A lot of people who dealt in Lyme are no longer doing it,” he says. “It’s a high-risk trade. But I’m less encumbered.”
A humble man, Jones lives in an apartment in this same unremarkable highrise. His commute is a flight of stairs.
What keeps him going? “10,000 kids with Lyme,” he says.
Opponents debates his figures, maintaining many of these children do not have Lyme. If they succeed in wresting his license from him, the Lyme community will have lost perhaps the only doctor left willing to treat these children, who, he says, in some cases would end up in institutions without proper treatment.
The new guidelines and the reduction in the number of doctors who are willing to treat Lyme Disease will certainly have an impact on the future of this troubling ailment. All the Lyme patients I spoke with traveled great distances to their doctors and felt that without them, they would probably be dead, if not by the ravages of the disease then by their own hand. As for myself, I realized in talking with these people that my case of Lyme Disease is ongoing. In the time since I was diagnosed, I was not only so unfamiliar with the disease that I didn’t recognize the symptoms but I was thrown into confusion by the massive amount of contradictory information available. I was also too scared of what it all might cost. The antibiotics I had already taken had cost me $731, out of pocket. So I’ve ignored a lot of the painful problems I’ve experienced since my visit to that island paradise five years ago. I know now these are related to Lyme. The doctor who originally diagnosed me has closed her practice because of the overwhelming amount of paperwork she was facing from insurance companies. As a single, self-employed patient, too young for Medicare and too “rich” (a relative term) for Medicaid, my health hangs in the balance of a system apparently unwilling not only to care for its constituents but perhaps unwilling to take responsibility for an epidemic that I am convinced can be traced to their doorstep by anyone willing to connect the dots. Warriors such as Polly Murray and Charles Ray Jones and Marjorie Tietjen and Lauren Lemay are only a few of thousands in this struggle which apparently all began on a scruffy little island in the middle of Long Island Sound, halfway between Long Island and Connecticut. Ferries loaded with cars and passengers pass it 30 times a day. Fishing boats pull catch just off its shores and the big, bright lens at the top of the old granite lighthouse sweeps, night after night, year after year, warning passing ships away from its rocky edges.
HERBS FOR LYME and GENERAL HEALTH