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Lyme Disease Treatment | One Woman’s Quest for Answers

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One woman’s quest to find Lyme disease treatment takes her through Lyme tick country and deep into the place where medicine and politics collide.

Lyme Disease Treatment

The Deer Tick can spread Lyme disease.

In July 2002, having spent an idyllic week’s vacation on one of the Elizabeth Islands off Cape Cod, I came home to New Hampshire. The island — a glorious, wild place marked by ancient beech forests, kettle ponds, and open grasslands — is also crawling with ticks, which at the time seemed only a minor obstacle to enjoying the abundant gifts it offers.

Within a month of my return, however, I would begin to learn a bitter lesson — in the history, ethics, and politics of a debilitating disease, and the mystery that has surrounded it for more than 50 years.

Like many others who visit New England’s islands, I was bitten by ticks, more than once. Ten days after getting home, on a very hot 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. More than anything, I craved sleep. I lay in bed, shivering and sweating. I finally found the strength to call my doctor, who waved away my suggestion that I might have Lyme disease.

Some days later, bruises appeared on my legs, first one and then another, and within another day, my entire body was covered in them. A friend, a nurse, saw the deep blue marks and said, “You have Lyme disease! Get to a doctor right away!” How she knew I have no idea — because they didn’t look like the pictures of the bull’s-eye rash I’d seen in books.

My doctor ordered blood tests. Indeed, I had Lyme. Soon my doctor was talking with specialists at the Centers for Disease Control and Prevention (CDC) in Atlanta, Georgia. I was a rare case. I had all four of the identifying factors: a verified tick bite, flulike symptoms, a positive blood test, and a bruiselike rash, known medically as erythema migrans, or EM. My doctor prescribed four weeks of a powerful antibiotic, doxycycline, and when the symptoms hadn’t completely subsided in that time, an additional two weeks.

The antibiotics cleared the rash immediately. The fever was subdued, but not my fear. I Googled “Lyme disease” on my computer. More than a million results came up, and to my dismay, many of them were in remarkable disagreement about almost everything. There were scores of “Lyme disease associations” to consult. Which ones were useful? I had no way to tell. I read dozens of personal stories — all with the same theme. The Lyme disease treatment was as perplexing as its cause.

I read about Allen C. Steere, M.D., the physician who first gave the disease its name — and who later received death threats and refused to make public appearances without security guards. I read about doctors who had been hauled before their state medical boards for prescribing long-term antibiotics, risking suspension of their licenses. I was mystified. This was beginning to sound like a John le Carre novel. My journey down the information highway had left me with more questions than ever.

Some of the Web sites I visited, such as lyme-rage.info, appeared to be outlets for fury against the medical establishment and the insurance companies. I could relate to that. My health insurance had expired just two weeks before I was diagnosed. A cancer survivor, 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. That application was denied. The reason stated? Lyme disease. I thought, “How could Lyme” — which I thought of then as merely an achy, flulike illness — “be worse than cancer?”

Whenever people heard that I had Lyme, they had stories to tell. That’s how I learned about Lauren Lemay.

At her Gilford, New Hampshire, home, she sits on her deck looking out across the gentle view of the distant hills. For six years she has struggled with this sickness. “The day before I got sick, I ran 10 miles, played nine holes of golf, and then I painted the living room. That was my typical day,” Lauren recalls.

Lyme Disease Treatment

Lauren Lemay: A former long-distance runner, she has fought lyme’s devastating effects for six years. “I was ready to try anything … there was so much wrong I felt I was dying.”

Dana Smith

Lauren, now 58, was an elementary school teacher, a long-distance runner, and a vegetarian for nearly 40 years. Health was her constant companion. “The next day, I was getting ready to go teach, and I just couldn’t move,” she says. “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 only the start. With increasing desperation, Lauren 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 physicians in her local area, she consulted doctors at Boston’s Lahey Clinic and Beth Israel Deaconess Medical Center. When she found no relief there, she continued to seek a diagnosis. 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 on to my husband’s arm, hanging on to 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 — but Lyme blood tests are widely known for both false positives and false negatives. In New York, finally, a “Lyme literate” physician, or “LLMD,” determined that she had advanced Lyme disease and put her on a doxycycline derivative. “I was on it a year and a half,” she says. “The medication made me sick to my stomach, and I had to go off it sometimes. But I’m so much better now. Now I’m off the antibiotic and seeing a Vietnamese practitioner in addition to my doctor in Portsmouth. I’m not all the way there yet, but I’m back to work part-time.”

Lauren wasn’t the only Lyme patient I met who has wandered helplessly through the narrow, darkened hallways of conventional and alternative medicine, seeking relief from their myriad symptoms. It turned out to be a rather common story, in fact — one that stretches back in time some 50 years. During my research, I came across a book called The Widening Circle, by Polly Murray. Published in 1996, it tells the story of the early history of Lyme disease.

In 1956, Polly Murray, an artist and housewife in Essex, Connecticut, began to suffer an array of inexplicable health problems. Doctors couldn’t find a cause. While she was pregnant with their second child, she and her husband, Gil, moved across the Connecticut River to Lyme, a pastoral place with views of the big river and of Long Island Sound.

A precise person, Polly kept a record of her family’s complaints. By 1964, they had four children, all suffering from rashes, fevers, aching and swollen joints, and diarrhea. Visits to the doctor were frequent; relief was rare. In fact, thumbing through the symptoms Polly recorded throughout the 1960s, you might think you were looking at the notes of a severe hypochondriac — except that her entire family was suffering from these complaints.

Eventually, doctors suggested a complete workup, including a psychiatric evaluation, at New England Medical Center in Boston. After three weeks of tests and observation, Polly came home with sleeping pills and antidepressants. But she continued recording all that was happening to her. And what was happening to her didn’t stop.

She discovered that other people in the shore area were experiencing the same ailments. She compared notes with Judith Mensch, who lived in Old Lyme, and in October 1975 they called the state health department to report the plethora of symptoms that were plaguing them, their families, and now their neighbors. Polly asked for an investigation. When she told her doctor what she’d done, he was furious and accused her of “stirring up trouble.”

Nevertheless, on November 20, 1975, she was referred to Yale University to consult Allen Steere — a rheumatologist who had spent his first two years out of medical school working for the Epidemic Intelligence Service (EIS), an arm of the CDC. Steere showed a deep interest in her case and wanted all her notes. She also gave him the names of other people she knew who were suffering as well.

By early in the new year, Steere had recorded 39 children and 12 adults from the Lyme area who were experiencing these symptoms — all of which he connected to the bite of a tick, and which he collectively called “Lyme arthritis,” a term that was later broadened to “Lyme disease.”

On a national television news show, Steere explained the epidemic. Irate that their town was now on the map for unwelcome reasons, Lyme residents accosted Polly again and again. Fear spread that the town’s real estate values would plummet.

From that small circle grew an epidemic of similar stories — people with elusive symptoms that could not be conclusively diagnosed. Doctors surmised that they had fibromyalgia, multiple sclerosis, amyotrophic lateral sclerosis (ALS, or Lou Gehrig’s disease), lupus, and sometimes Parkinson’s. Yet this 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 its environs. The Connecticut Agricultural Experiment Station, however, 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 for more than 20 years.

Polly’s experience sounded alarmingly like Lauren Lemay’s. But I had to remind myself that a half century had passed in the meantime. I shook myself back into the present and drove to New Haven to see a tick specialist.

Kirby C. Stafford III, Ph.D., the Connecticut state entomologist, sits in his office at the Agricultural Experiment Station in New Haven, 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. Under magnification, the creature looks powerful and indestructible, like a prehistoric tank. It is, he tells me with almost paternal glee, “the ideal parasite.”

Lyme Disease Treatment

Dr. Kirby C. Stafford: Connecticut’s state entomologist has committed 19 years of his career to tick research. “[Lyme disease] is not going away.”

Dana Smith

Stafford gestures to his wall of filing cabinets: “Ticks, 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 itself was discovered in 1982. After that, things proceeded rapidly.” He’s telling me about the cause of the disease: Borrelia burgdorferi, the corkscrew-shaped bacterium that spirals its way into humans from the mouths of ticks.

The mustachioed Stafford has a calm, precise demeanor, and with pens and eyeglasses 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 was right here. Dr. Louis Magnarelli developed the test.”

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 here each year. Scientists grind them up and test them for the spirochete bacterium that has bored its way into hundreds of thousands of Americans to date, and even deeper into their consciousness.

Stafford is the author of the Tick Management Handbook, a booklet that is distributed throughout southern Connecticut. (It’s also available online at ct.gov/caes/site/default.asp.) In it, he discusses tick biology, tick-borne illnesses (Rocky Mountain spotted fever, ehrlichiosis, babesiosis, encephalitis, tularemia, Lyme disease), prevention, chemical control, and landscaping methods to reduce the Ixodes population — in part by managing the numbers of deer, white-footed mice, and chipmunks (all principal hosts of disease-bearing ticks) on one’s property — and Lyme disease treatment.

“It’s not going away,” he says confidently. He shows me the CDC’s incidence map, noting 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, 49 states in the Union have now reported cases. There are a number of places where Stafford and his researchers have been collecting ticks for many years, including Polly Murray’s backyard.

“How does Lyme 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 can be factors. But it’s widely believed that birds played a role in a lot of this.” He shows me the tick’s life cycle, 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 machine, I suddenly think it’s a miracle that any tick survives with so many bridges to cross until it reaches the final stage on the back of a moving deer. “What about reducing the number of deer?” I ask.

“We’ve been wrestling with that for a number of years,” Stafford replies. “We’ve done studies, and we’ve found that it 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, are trying everything they can to contain this epidemic.

Outside the French doors of her kitchen in Redding, Georgina looks out on a wildflower meadow that slopes gently toward the woods. The turquoise waters of the family’s pool ripple in the breeze. This bucolic scene, once their paradise, is now a kind of no-man’s-land for her family — what she calls “no child left outside.”

“We moved here to be in the country,” she explains. “We built a treehouse for our sons 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.” Georgina is a neurologist; her husband is an immunologist. “The problem is, we’ve got too many deer,” she adds. “Why would anyone tolerate a problem that’s destroying the woodlands, causing fatal car accidents, and spreading disease?”

Last summer, Georgina and her husband took a trip to Maine and stayed on Monhegan Island, where there are few ticks. “It was wonderful to be somewhere where they weren’t,” she notes. But it wasn’t always so.

On Monhegan Island, a little rock of a place 10 miles out in the ocean off the coast of Maine, Peter Rand, M.D., and his band of fellow sleuths at the Maine Medical Center Research Institute have spent almost 20 years studying the relationships among deer, rats, and ticks, and how their population levels correlate with the spread of Lyme 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 a patrician bearing. From his office in South Portland, he loves to tell the story, an adventurous tale of trips to the island on the high seas, collecting ticks in the snow, and late-night sessions around a roaring fire, the team talking about the future of their research. “The beauty of the island was that it was contained,” Rand explains. A scientist’s dream.

For part of that time, most of the 75 full-time residents of Monhegan acted as guinea pigs; the island’s little general store became their makeshift clinic. “The people would come down and put their arms on the meat counter, and we’d draw blood,” Rand recalls. Dogs and cats were tested, too. He sometimes felt as though he were on the set of M*A*S*H.

His team worked like that for 13 years: “We found that as the years went on, up to 13 percent of the island’s residents had Lyme.” The local fear was that the presence of the disease would scare away visitors, who provide Monhegan with vital revenue. And so, after furious debate, residents agreed to have all the deer killed. Between 1996 and 1999, more than 100 deer were shot and their carcasses processed (the meat was donated to food banks), effectively removing the most active tick host from that island. And now, six years later, Lyme is rare on Monhegan. Rand’s study was a triumph in the annals of Lyme disease prevention.

One comment I heard more than once is that Lyme doesn’t kill you — but you wish it would. In Brunswick, Maine, I visited Rita Losee, a little fireball of a redhead who was once a nurse and a triathlete. Bitten by a tick while hiking the Appalachian Trail, she was diagnosed quickly, but when she’d finished the recommended course of antibiotics, her symptoms returned. “There were three or four times when the pain was so awful, I was within days of killing myself,” she remembers. Her doctor changed her diagnosis to chronic fatigue syndrome. At first she believed him — but then she started researching on her own. “I convinced my doctor to put me back on antibiotics,” she says, “and I started to feel better again.”

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 one 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 as if I were 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 Newsday who started investigating, and he traced the whole thing to a little island off Long Island where the United States has a biological factory, and that this Lyme bug was an escapee.”

I knew what Rita meant by the “strange energy” surrounding Lyme. When I visited Georgina Scholl and asked her to explain the 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 wouldn’t answer questions about the “biopolitical” aspect of Lyme. What did they mean by that? I wondered. What was there about this disease that could not be discussed?

And then I met Marjorie Tietjen, a sweet-natured woman who lives with her husband and son in a house in the woods of Killingworth, Connecticut. Marjorie, who has suffered from Lyme since 1989, calls herself a Lyme activist. I’d read her articles on the Web and was impressed by her wealth of information. She welcomed me to her home. Like almost every other Lyme patient I’d visited, she had stacks of papers and folders piled on the dining room table.

Lyme disease treatment

Marjorie Tietjen: Eighteen years of coping with lyme have turned her into an activist. “My frustration has been that wherever I go, no one focuses on the root of the problem.”

Dana Smith

Marjorie had her own 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).

Carroll discovered that Plum Island, which sits in eastern Long Island Sound, was set up after World War II with the help of Erich Traub, a German germ warfare expert. During the war, Traub had operated a lab on an island in the Baltic Sea. Islands, it was thought, were ideal for such research, as they’re self-limiting. But we know now that that’s an illusion. As 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 Plum Island’s shadowy netherworld: virus outbreaks, biological meltdowns, infected workers, contaminated raw waste flushed into the Sound … and experimental tick colonies, bred for research on vector-borne diseases.

As the big white ferry New London pushes forward into deep water, steel-gray clouds hide the sky. The trip to Long Island takes about an hour and a half, and midway through our journey, on the port side, Plum Island appears, crowned with a water tower and edged with large, flat-roofed buildings. Off the island’s shores, fishing boats and pleasure craft bob. At its tip, a picturesque granite-based lighthouse sits, like a photo on a postcard.

On the map, Plum Island lies like an arrow, one end pointing toward the Connecticut coast and other toward Long Island’s North Fork. At the same time that Polly Murray and many others in that area were beginning to experience bizarre symptoms, Plum Island’s germ research was up and running. Birds, stopping on Plum Island, often flew next to either Montauk (on the South Fork) or Lyme, where the rich estuaries of the terminus of the Connecticut River lured them. Initially, the highest incidences of the disease were in Lyme and surrounding towns, and at the tip of Long Island.

Lab 257 has been shut down, but other labs on the island perk along. If infected ticks did escape from this island, they’ve long since done the damage and nothing can stop them now; Borrelia burgdorferi is out and about, doing its job, making people sick.

And as it spreads, physicians and researchers continue to squabble among themselves: Some say that long-term antibiotics are the only treatment for Lyme disease, while the more conventional among them advocate only short doses of antibiotics — and believe that if a patient needs a longer protocol, the illness must not be Lyme. Insurance coverage is often denied.

One way to stop an epidemic is to redefine it. Recent guidelines issued by the Infectious Diseases Society of America (IDSA) have narrowed the disease’s diagnostic criteria so tightly that it’s hard for any chronically ill Lyme patient to fit the profile — leaving thousands of people robbed of an answer.

And one way to control an outbreak is to determine which doctors can treat it and which ones cannot. According to the Lyme Disease Association, since the early 1990s more than 30 Lyme specialist physicians in 10 states have been brought before state medical boards under charges of overdiagnosing Lyme and overtreating with antibiotics. This, of course, is a chilling development for doctors who want to treat Lyme disease patients.

Charles Ray Jones, M.D., is a 78-year-old pediatrician whose New Haven practice has embraced 10,000 children with Lyme since 1968. “I didn’t know I was treating Lyme patients at the time. There was no such thing,” Jones says. In fact, he’s not only the world’s foremost pediatric chronic Lyme disease specialist, he’s virtually the only one.

Lyme disease treatment

Dr. Charles Ray Jones: Hero of the chronic lyme community, he is also the target of a medical licensure hearing. “it’s a high-risk trade … I’m considered the great satan.”

Dana Smith

I’ve come to see him on a rainy Sunday afternoon, the only day of the week he doesn’t see patients. A humble man, Jones lives in an apartment in an unremarkable high-rise. His commute to his office is a flight of stairs.

His patients come from all over the country to his office, just down the street from Yale’s School of Medicine. In addition to seeing patients all day long, for the past year he’s been driving north on a regular basis to a Hartford hearing room, trundling a wheeled suitcase filled with papers relating to the case against him, which may rob him of his license to practice.

He greets me in the courtly manner of his generation, almost bowing. In placid tones, he explains his life with Lyme. In the 1960s, he was a staff physician at Memorial Sloan-Kettering Cancer Center in New York. During that time, he and his wife began to look to the Connecticut countryside as a better place to raise their children. In 1968, they moved to Hamden, then a sleepy hamlet beside the Quinnipiac River, and he set up his practice.

“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. The clusters were not just in Lyme; they were all around. And there were many of them. Polly [Murray] was instrumental because she demanded they do something about this.”

Along with Allen Steere and Eugene Shapiro, M.D., who now sits on the opposite side of the hearing room, Jones worked to solve the puzzle of this peculiar, crippling ailment. “Sure, we were colleagues at first,” he notes. “We were all trying to figure it out. You could say we were mired in a lack of understanding.” For Jones, this search for knowledge transformed into his specialty. He became an LLMD, Lyme literate by evolution.

“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’s his problem, too. Jones has been charged with diagnosing two children in Nevada with Lyme disease before examining them, and with prescribing antibiotics for them over the phone. Shapiro, his former colleague, a professor of pediatrics and epidemiology at Yale’s medical school, not only brought the charges against Jones but also helped write the guidelines that have narrowed the Lyme disease diagnostic and treatment guidelines. The Hartford Courant once quoted Shapiro as saying that he had had calls from physicians in Connecticut “begging me to see their patients so they don’t have to see Dr. Jones.”

On the day I visit, Jones sits at his desk in a big leather swivel chair. On the desk are neat stacks of patient files. For the hearing, which he calls variously a “conspiracy,” a “witch hunt,” and an “inquisition,” his accusers have subpoenaed many of his charts. “I’m considered the great Satan,” he says with a gentle smile, “which always amuses me.”

“This is not a malpractice suit,” he notes. “If the charges were serious, it would be malpractice.” He goes so far as to label the charges “trivial.”

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 claims. For his legal defense fund, almost a million dollars has been raised by his patients’ parents and, in some cases, by his patients themselves. “This little boy,” he says, pointing to a photo of a cherub-faced youngster, “had a lemonade stand this summer, and he raised $33. Another little boy, 6 years old, came in with 21 cents in a paper cup.”

Hundreds of parents have crowded the Hartford hearing room in support of this aging doctor, a widower of 12 years, who in any other life would be retired. “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.”

Opponents debate Jones’s figures, maintaining that many of these children don’t have Lyme disease. If they succeed in wresting his license from him, the Lyme community will have lost perhaps the only physician left who’s willing to treat these children long-term — some of whom, he says, would end up in institutions without proper treatment for Lyme disease.

Clearly, the new diagnostic and treatment guidelines and the reduction in the number of physicians willing to see chronic Lyme patients will have a huge impact on the disease’s future — and the lives of the people suffering its ravages.

I realized in talking with these people that my own Lyme disease is ongoing. At the time I was diagnosed, not only was I so unfamiliar with the disease that I didn’t recognize the symptoms, but I was also confused by the massive amount of contradictory information available. And I was scared of what it all might end up costing. I’d already spent $731 out of pocket on tests and treatments. So I’ve ignored many of the painful problems I’ve experienced since my visit to that island paradise five years ago. Today my health hangs in the balance of a government and a medical system apparently unwilling not only to care for their constituents and patients but perhaps to take responsibility for an epidemic as well — a scourge that I am convinced can be traced to a scruffy little island at the eastern end of Long Island Sound.

Ferries loaded with cars and passengers pass it up to 30 times a day. Fishing boats pull catch just off its shores, and the big, bright lens at the top of the old lighthouse sweeps the water, night after night, year after year, warning passing ships away from its rocky edges.

Comments
  • Coyotesun

    This is no approach to such a dangerous bacterium. That’s like saying you can cure syphilis with spiritual healing. And you cannot.

    Reply
  • I’ve heard about a new ultraviolet machine called the UVLRx that’s being used for Lyme patients. It uses a fiber optic thread which is inserted directly into the vein and the treatment lasts for an hour, so all the blood is treated. Has anyone tried this?

    Reply
    • Yes on the UVLRX. Also can try UVA & UVB light therapy, and ozone therapy.

      Reply
  • Agree with all of you that Lyme does with your life what it wants and leaves you feeling hopeless, but it had to be God’s will that the year I took the tick off of me, I found essential oils. At first, was just using them to get some kind of relief of the frustration I was going through. Didn’t even think of Lyme because 4 tests come back negative from the NL. All my friends kept saying that I had Lyme symptoms and in Nov. ’13, a LLMD sent my blood to Igenex(only reputable testing facility) found that I was positive for Lyme, Bartonella and Babesia. Horrible and cried, but thought there has to be some kind of way to fight it. Nope, not that the docs would stand by and abx won’t do it and will cause other problems.
    So, after reading more about the essential oils, found them to have so many benefits..that give hope to kill the Lyme.They are the ONLY things that will break the blood-brain barrier and because abx won’t. Use them in every bath and mix 15 different oils(YL) into a cup of Epsom salts. Also add a cup of Apple Cider Vinegar, plus a 1/2 cup of Baking Soda. At the end of the bath, while soaking in a pretty warm/hot bath, I slather Coconut oil all over my body. So far, it has been the only thing that has kept me going.
    Suffered for almost 8 yrs with this hell and last month, went and got a Raindrop treatment, but NOW can’t move. I don’t understand, unless the Lyme is so bad…that it has made me suffer worse.
    God sent me hope with the essential oils. A year ago, vomited every 3 mos, until started drinking the ACV mixed with Honey. That stuff is a miracle in a bottle!!! God Bless anyone suffering with Lyme and reach for the Essential oils and most importantly God. He helps me get through each and every day. :)

    Reply
  • marlenehstack@gmail.com

    Wow where in Vermont or New Hampshire can I find a doctor who has these facts?

    Reply
  • marcelle

    Why, oh why in the name of God is modern medicine allowing us to live in this horror, this nightmare in which there is no waking?
    So many people, so many stories of health and lives being destroyed and they allow this to go on.
    I am beyond hurt, I am beyond upset, I am all alone fighting for my own life.
    SOMEBODY PLEASE HELP US. We beg and beg and we are left unheard.
    http://www.caringbridge.org/visit/slippingaway

    Reply
  • David

    I have been going through a living hell since Jan 2012. I am an avid outdoorsman, or at least was .I was Bitten in Nov of 2012, went to doctor and was told rash was from dry skin, I then went to my VA Dr when my foot became numb joints aching ,fatigue the works l was put on gabapetin. which I am still on. Went back to primary Dr and asked for Lyme test which he declined and sent me to chiropractor big mistake. At same time I had ruptured 3 discs lower back.I had successful back surgery July 2013 I recuperate the next 3 months planning to go back to work at my mason contracting business , never happened. I then went to 5 different neurologists private and VA , at this point I am in a wheelchair after numerous mri’s, emgs , I had a spinal tap done which showed 2 bars for Lyme disease not enough to get treatment needed so we claimed 10% Lyme disease 90%neuropathy. This was after 2 western blot tests that were negative and 1 blood culture test negative after 16 weeks. I felt at this point testing was inclusive since I had my spleen removed 15 years earlier. My doctor then put me on daily injectionso of rosefin and IVIG infusion every 3 weeks for a year some improvement but Quadra cep muscles still do not respond. After a year new insurance carrier refused to cover treatment. I have been on an aggressive antibiotic treatment for last 6 months not much change. Is there a doctor out there who is up for an extreme calender please email me . Thanks for the opportunity to get my story out there.

    Reply
  • I am being treated for Lymes disease. However, I have tested negative both times. My symptoms started in 2012. Flu like symptoms, extreme fatigue, mild joint pain. I tested negative. However, Throughout the years, I have been diagnosed with Hashimoto’s, Low Blood Sugar, and Sjogrens, and a few other ailments that go along with the tale signs of Lymes, and I never felt quite right. Regardless, I managed to lead somewhat of a normal life. However a month ago, I started to experience extreme joint and muscle pain (the pain moves from one body part to the next without warning), and stiffness throughout my whole body, tremors, eye sight is getting worse, and I am experiencing brain fog, anxiety, and fatigue and many of many of symptoms relative to Lymes. There were a few times, my husband had to carry to the bathroom and dress me the pain was so bad. BTW, I eat healthy (very clean), exercise 6 days a week (intermediate weight lifter, runner, and kick boxing and other sport related activies). I took it easy the times i didnt feel well, and pushed my self when I had okay days. Now, I can barely get myself to work or clean my home, and take care of my family. I was retested for Lymes, this time with a Western Blot, but it again came back negative. However, my doctors says the tests are not reliable and she put my doxycycline (21 days). My concern after reading some of these posts is that if in fact I do have lymes (i am convinced i do), I am not going to get better after the 21 days. Then what? It sounds like, the longer you have had the disease, the longer you need to take antibiotics. But doctors do not like to give out more antibiotics than they think are required. Scared! I have been on the antibiotics for 1 week now, and I feel the same as I did before I started taking them. Has anyone else tested negative, but have been treated for Lymes?

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  • Lyme also caused spleen enlargement,… it truly is a serious disease and it lingers on and on….very scary…docs are idiots and if it wasn’t for all 3 of us getting sick,…we prob still be without treatment…my mom had sympts first …then 2the later we got ill… my pro and I had the rash… she never did… she also got panaceatitis…

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  • Lyme has caused our family HELL….and thankfully 3of us got lyme to be taken serious.Took 5yrs to get treatment.My mom had her thyroid removed cuz of lyme… it destroys your entire body…my brother and i still take thyroid mess cuz of lyme.we all wore braces had nice teeth, but now they are brittle… my mom lost two.my bro lost one tooth..our fingernails got clumps..now keep in mind these things happen on top of the regular lyme sympts…

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  • Dear Cheryl, I know that you wrote your comment in 2010 but I just found it today Feb. 20th 2014. 26 years ago I was bit by a tick on my back & I really didn’t think much of it cause I was bit by ticks before. I remember I ended up with a big bulls-eye patch on that spot but I did not have any other symptoms except it itched a lot, so I didn’t go to the Dr. Later on as time passed I started having allergy symptoms. I had never had them before until that time. As time has gone on I started having symptoms just like yours, can’t sleep,fatigue,allergic to all kinds of foods, including gluten, body aches, ringing in my ears all the time, low body temperature, low blood pressure, & so on…… I have had a lot of tests done but they don’t find anything wrong. They treat me like It’s all in my head! I have had a sinus infection since Christmas of 2013 and having a very hard time getting rid of it. I tried antibiotics but they didn’t work, all it did was give my diarrhea. So now I am looking on the internet for some answers. I am wearing my husband out with all of this too! I found a lot of things that I thought it could be &alot of answers on how to help the symptoms. But nothing made since of how I got these symptoms in the first place until I read your post. I am going to start using essentual oils to see if that will help & a lot of prayer, I really want to be healed of this!!! It is really hard to function & I want to do ministry with my husband! If anyone has any other answers please let my know, cause I’m sure there are others out there like me looking for help!

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  • Is there any way that I can contact you to ask some questions about Lyme? I am a 41 year old mom and wife and think I have lyme. If you would be so kind as to email me so I can ask you a few questions? Thanks so much
    Jamie

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  • Rebecca

    Hi,
    I do not know of a dr. in NC. But, would like to suggest my Dr. Daniel Cameron in Mt. Kisco, New York. After 25 years of many diagnosis and feeling awful in many ways this man is helping me and multitude of others to get better from lyme and co-infections. He truly is a kind and caring Dr.. His doors have been open every day since 1987. He is or has been president of the lyme project. He sees patients from Florida, Wisconsin, Idaho, Illinois, CT, New Hampshire, MA, Vermont, Maine, Canada, Turkey, and Europe. Basically from all over the world. Google him and watch the movie Under Our Skin. I hope I have helped. Becky

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  • sharon

    thank yoy for the information 20yrs simtons havt started coming back with a vengeance myw doctors oh its ms or lupus.ok bullseye+ headaches,jawlpain,rash from pain like shigels you know the hole list.and adding 2+2 I also tested positive by my OBGYN fo Fish but Thay never saw the bullseye because I myself though it to be a ringworm.if you can do you know a docter in NC that Will teste me withi trying to kill me

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  • For anyone interested in alternative methods, I know people who have been cured through Sufi spiritual healing. Cupping is supposed to be the only way to remove it from the body completely. (it pulls the blood out). One woman who was healed through spiritual healing relayed to me that the core of it (for her anyway) was around deep fear and she needed to work on that to heal.

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  • There is life after Lyme Disease after all. After being symptom free for 18 months, I can now say that a proper course of antibiotics used concurrently with homeopathic remedies has cured me of Lyme Disease. Could it be harboring in my body still? Possibly. But I wanted to follow up with readers that my health has improved and I am able to work full time again without any negative side affects. I stay out of the woods now, and after gardening in my yard, I do a thorough check for ticks on my clothing and body. The important thing to stress here is that you need to understand the different symptoms of Lyme Disease and get it under control as soon as possible. I wish good health to anyone who is currently battling Lyme Disease! If your medical doctor doesn’t take proper care of you, try visiting a naturopathic doctor who will offer a more comprehensive care plan.

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  • We are on Lower Cape Cod. I have the July/August 2007 Yankee Magazine and keep referring the article, “Trouble in Paradise” to others. What a service this article has been to others. I have been diagnosed with Lyme Disease twice and the second time, I copied the article by Edie Clark and gave it to my doctor. They didn’t know or didn’t like the fact that I said: “I HAVE LYME!”. Both times I had a horrific headache and freezing chills soon after a tick bite. I didn’t have a rash the first time. I would ache all over and before I think it left my body, at some time every bone and muscle had either an ache or pain. Now, I keep doxycycline on hand. Whenever I discover a tick bite, I take two right away. I put the tick, when I find it, in alcohol. I haven’t had Lyme since 2005 that I know of, but I’ve taken doxycycline several times. This past summer when going to bed, I felt something itchy, asked my husband to look, and he didn’t see anything. Well, I had three tiny deer ticks on my upper legs and buddocks. We needed a magnifying glass to actually see them. I think people may miss or dismiss these tick bites thinking they are mosquitos or spider bites. Please take a good look, everyone. These ticks are smaller than a pin head in the nymph stage. Spraying your clothing and tucking in your pants helps, but anyone can bring the ticks into your house including animals. Please, BE AWARE!

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  • I’ve been suffering with chronic Lyme Disease for over 2 years but I think I am finally feeling better after taking doxycycline for 4-1/2 months followed up with Biaxin for 2 months.

    I tested positive for Lyme in December 2008 but I did not realize I had the disease for about 6 months because I didn’t have the tell tale signs of the rash or fever. I became progressively more fatigued and achy until I couldn’t get out of bed. That’s when I stopped making excuses for the way I was feeling (stress, working too many hours, peri-menopause, etc.) and made an appointment with a naturopathic doctor who diagnosed everything that was wrong with me. I now have to take thyroid medicine for Hashimoto’s Disease and can no longer eat gluten due to Celiac Disease, both of which are auto-immune diseases. The medical doctors say these new illnesses are not related to Lyme Disease but I never had any ailments in the past until I became ill with the Lyme. I was a strong, healthy person.

    Lyme disease took away my livelihood due to cognitive problems. I used to create amazing landscape designs, teach adult ed classes, and write gardening articles but now it has become too difficult for my brain to function the same way now. I become easily fatigued and have dizziness and ringing in my ears. My knee is very stiff and painful. I make spelling errors when I try to hand write notes. I can’t remember names and details like I did in the past. It causes me to feel depressed at times and I worry that my brain will continue to deteriorate over time.

    The scary part is that there doesn’t seem to be a cure for Lyme Disease. Antibiotics make you feel better and reduce the symptoms but I don’t think I will ever be my old self again. I am currently using homeopathic tinctures instead of antibiotics because I was worried about the side affects of long term use of antibiotics. I feel better but only time will tell because it usually takes 2-3 months for my symptoms to return when I finish my course of antibiotics. I am trying to remain positive.

    I wish someone in the political or insurance realm could do something to help the victims of Lyme Disease. Why won’t they face up to to the reality of this disease? If you are bit by a tick, I would recommend taking antibiotics right away. It seems to help if you get started on the treatment immediately. Don’t wait like I did or you may never be free of Lyme Disease.

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  • I find the “political/medical” cover up of this problem astounding. The very people that are working so hard to keep their jobs by covering up faulty judgment and past mistakes should lose those jobs permanently…if for no other reason than they cannot be trusted to have the health of the general public as their main goal. Are they really so stupid as to believe that making it almost impossible to be officially diagnosed with Lyme Disease will make it all go away? And prosecuting doctors that are trying to solve the problem is shameful.

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  • This was the most amazing article that explained my Lyme Disease. I refer physicans, friends, and family to this article regularly. If anyone tells me they have Lyme Disease I send them to this article. It really explains why my father never got Lyme Disease, and the try seriousness with this illness. Thank you for being so bold to do the research and to print this. It will help millions of people!

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  • Donna

    I have Yankee magazine emailed to me every month, but in June last year I moved back to Connecticut after spending 2 years in North Carolina near my grandchildren and missed this article until now. I have been having weird ripping pains in my hands that heal in about 4 days only to return. I could hardly hold a pen today with sharp pains shooting in my hand whenever I tried to do normal activities. After a year of this, and it not getting better today after my usual 4 days or so of healing, I decided to go to the walk-in. I have lab work that I have to get done, and I noticed a Lymes disease test.

    Funny thing I thought. Many years ago (16) a doctor tested me for hypothyroidism, Lymes, and Epstein Barr/mono. The Lymes and thyroid tests were negative. The Epstein Barr titer test was positive. I was diagnosed with Chronic Epstein Barr.

    Years later after getting a tetanus shot, weird things began happening. Pain, severe pain, muscle spasms and muscle jerks spread all over my body, then 2 months later burning, boiling pain. Tender pain I used to call “it feels like raw hamburg pain.” Then if I did some sit ups, I would have serious tender pain between my muscles and rib bones. I’d say, it feels like someone hit me with a baseball bat multiple times. My exhaustion for years continued. I would wish for death. I would cry from the pain and exhaustion. I didn’t want to be in a relationship so they wouldn’t have to deal with my limited life.

    After seeing multiple doctors, I was diagnosed with fibromyalgia. I always feel sick. I have a hard time getting up in the morning and a hard time falling asleep, or staying asleep. I always hurt.

    I came home tonight with thoughts of the meaning of my painful hand symptoms and what they might have to do with Lymes disease? I began my internet search again. Again I was reminded of another search I had done, and the tell-tale sign of the bulls eye rash. It’s a funny thing because I had that once… (27 years ago) more than one on the same leg, so I counted it out. It was more than one area so it can’t be Lymes. The Lymes test was negative, and there was also more than one bulls eye area at the same time (and it didn’t get better). Then I read on the net, you can have more than one even if there’s only one bite.

    Ok, so now I continue searching trying to find any type of bite that might have the look of my bulls eye. My bulls eye was not the red rash. I distinctly remembered mine were bruises. You can imagine after all these years of never mentioning it to a doctor. I am now a nurse, (and after 19 years of nursing at 50 years old going back to college because my repetitive ‘injuries’ and exhaustion is making life miserable if not impossible at times) I was not a nurse when I had these bulls eyes but niether was I taught about lymes disease in nursing… never mind atypical BRUISE-type bulls eyes! Thank you so much for this article, and please, please thank that nurse!

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