The News Times, July 8, 2008

Waiting for a cure: Lyme disease author sees science as salvation by Robert Miller

In 1993, hoping to raise their two sons away from the mean streets of Queens, author Pamela Weintraub and her husband Mark made a circle on a map with Grand Central Station as the bull's eye. Working from that central point out, they chose the beautiful wooded New York town of Chappaqua as their life's destination.

Welcome to what she calls Lymelands -- the New York-Connecticut suburbs where Lyme disease is endemic.

"It would be the biggest mistake of our lives,'' Weintraub writes in her new book "Cure Unknown; Inside the Lyme Epidemic'' about the history and treatment of Lyme disease in the United States.

"If only we'd known how infected we'd get from living on that land and how much skepticism we'd face from local schools and doctors, if only we'd understood that we, ourselves, would be the bulls-eye, we would have never left Queens.''

Thanks to the ticks in the woods near her home, Weintraub, her husband and both her sons would become severely ill with the disease and force the family to move to Stamford. Her younger son, David, is still suffering from a re-infection he picked up at Purchase College in New York.

At various times, they suffered from headaches, fatigue, arthritis, and in Weintraub's cases "a buzzing'' that coursed through her muscles.

"It felt like electricity going through my body,'' she said.

But living with Lyme gave Weintraub both the insight and the dogged ambition to find out some truths about the disease.

Weintraub will be in Ridgefield on Saturday to speak about her book and experiences with Lyme disease. Her talk is set from 1 to 2 p.m. at Ridgefield Library.

Jennifer Reid of the Ridgefield Lyme Disease Task Force said Weintraub's story of Lyme disease matches that undergone by her own family -- sick children, disbelieving school officials, and the difficulties of treating the illness.

"I asked a lot of the same questions. It was very, very moving for me,'' Reid said of Weintraub's book.

Like Weintraub, Reid believes science will prevail in the debate. But she also said when Lyme disease strikes a family, it's impossible to be patient.

"The work isn't finished,'' Reid said. "But 10 years ago, I couldn't wait. My hopes is that within the next 10 years, there will be answers to all these questions.''

"Sometimes it takes 50 years for scientific opinion to change,'' said Dr. Steven Phillips of Wilton, an area doctor who has been past president of the International Lyme and Associated Diseases Society, and was one of the doctors Weintraub interviewed for her book. "But it is changing and it will continue to change. There's quite a number of articles in the scientific literature already on this.''

Weintraub's book, published by St. Martin's Press, chronicles the struggles of her family, and other families, to get treatment for a disease that a large segment of the medical establishment won't admit even exists.

But rather than remaining stuck at the pro-Lyme, anti-Lyme debate, Weintraub spent many hours interviewing researchers who are experts in the ticks that spread Lyme, and the bacterial spirochete, Borrelia burgdorferi, that causes it.

What she found is that these researchers -- at places like the State University of New York at Stony Brook on Long Island, and the University of California at Davis -- are slowly figuring out how complex the bacteria and the disease are.

And Weintraub said, these researchers, by and large, confirm what many Lyme patients have learned through bitter experience -- the bacteria can cause a persistent infection that may not be treated easily by a couple of weeks of antibiotics.

"I'm a journalist,'' said Weintraub, who has written four other books and hundreds of articles about science and medicine. "I get my information by interviewing people. What I found after looking at this research is a nuance and complexity to support the patients' experience.''

Dr. Daniel Cameron of Mt. Kisco, N.Y., the president of the International Lyme and Associated Diseases Society, agreed that the research will increasingly show that Lyme disease is a difficult disease to diagnose and treat. The debate over treatment hasn't caught up to that research, he said.

"My feeling is controversy is the product of not enough data," Cameron said.

ILADS represents the smaller contingent of doctors who will treat Lyme patients with extended courses of antibiotics and other drugs if they think it's necessary.

In opposition stands a much larger group, the Infectious Diseases Society of America, which is on record as stating that chronic, persistent Lyme infection does not exist.

"Lyme disease is a condition that's been studied for 25 years,'' said Dr. Eugene Shapiro, a professor of pediatrics and epidemiology at the Yale School of Medicine. "We have good incontrovertible data on it.''

That data, he said, shows that almost everyone who contracts Lyme disease gets better after two to four weeks of antibiotics, including those with arthritic joints swollen by Lyme infection. What happens to Borrelia spirochetes in a petri dish, or in a study with mice or monkeys won't change that.

"It's fine to do studies,'' he said. "I'm not saying people shouldn't do them. But it's an unjustifiable and unsubstantiated leap of faith to do them and then say this is how people should be treated for Lyme disease.''

However, Shapiro said, making that leap "sells books.''

Conflict on treatment

Weintraub said that she was reluctant, at first, to write about her family's experience with Lyme disease. She finally concluded it would have been dishonest to exclude that from her account.

But she said that she deliberately decided not in her book to spend too much time in the debate between doctors in the Lyme controversy.

Instead, she spent more time interviewing bacteriologists and entomologists and infectious disease specialists who are now studying the DNA of Borellia burdorferi to better understand how it works, and conducting animal experiments that seem to point to the reality of persistent infections with the spirochete.

One of the sharpest sticking points in the Lyme disease debate in recent years has been the treatment guidelines. While the International Lyme and Associated Disease Society believes treatment should be individualized for each patient, the larger and more influential Infectious Diseases Society of American recommends people get only two to four weeks of antibiotics treatment.

The IDSA also flatly rejects the concept of chronic Lyme disease. So does Shapiro of Yale.

"Chronic Lyme disease doesn't exist,'' he said. "It's not these people don't have problems; it's not that I don't have compassion for them. But Lyme disease isn't the cause of their problems.''

And to treat them with long, expensive courses of antibiotics solves nothing, he said.

"Yes, some patients do better on antibiotics,'' Shapiro said. "Some do better on placebo. Some do better on IV vitamins.''

Weintraub said however that many of the researchers she interviewed, while not wanting to get mired in the treatment debates, think the IDSA approach to Lyme is wrong. The IDSA won't debate those researchers, she said, preferring to engage "Lyme literate'' doctors and patient advocacy groups in a debate that is more about medical politics than science.

She also points out in her book that some of those researchers are trying to re-think the current preconceptions people have about Lyme disease. One of those is an infectious disease specialist Dr. Ben Luft at Stony Brook.

Luft's team has gone out, collected ticks and done a thorough analysis of the Lyme bacteria, studying its genome and proteins and trying to gain new insights on how the bacteria works.

"We have put together a team with no preconceptions about Lyme disease,'' Luft told Weintraub. "We are going to move on.''

And that approach, she said, may be the one needed if the title of her book -- "Cure Unknown'' -- goes out of date.

"We need to say we know the science is not there yet,'' she said. "We need to see what direction that science is moving in. We need to learn what this disease is.''

Contact Robert Miller at bmiller@newstimes.com or at (203) 731-3345

Sacramento Bee, June 17, 2008

Dorothy Kupcha Leland: Lyme disease threat being poorly handled

Three years ago, in a bolt out of the blue, my then 13-year-old daughter became seriously disabled with a puzzling and painful illness that her doctors could neither treat nor explain. This previously healthy and athletic teenager suddenly needed crutches and then a wheelchair, due to intense body-wide pain and a cascade of incapacitating symptoms that worsened daily.

None of the top specialists we visited could pinpoint the problem, and none of their treatments could stem her alarming deterioration. It was only when we finally stepped outside of the medical mainstream that we found out she had Lyme disease. And only then did she receive effective treatment to halt her precipitous decline and start her on the road back to health.

Thus was I thrust into the alternate reality that science journalist Pamela Weintraub chronicles in her new book, "Cure Unknown: Inside the Lyme Epidemic" (St. Martin's Press, June 2008). It is a world that an estimated 200,000 Americans a year tumble into, like Alice down the rabbit-hole, only to arrive at a foreign environment where the medical establishment seems poised to sabotage patients instead of help them.

"Cure Unknown" starts with Weintraub's personal story. In the early 1990s, she and her family moved to a seemingly idyllic, wooded neighborhood in suburban Westchester County, N.Y. Before long, they fell ill with a laundry list of perplexing symptoms: pounding headaches, painfully swollen knee joints, violent mood swings, limbs that felt like they were being jolted by electrical shocks and crushing fatigue.

Eventually, the Weintraubs learned they had contracted Lyme disease from infected ticks lurking in those beautiful woods outside their doorstep. But that determination came only after a forced march through a medical labyrinth that erected barriers to proper diagnosis and treatment at every turn. And it came only after family members had developed chronic, disabling conditions that might never be cured.

For, although early treatment is a Lyme patient's best shot at getting well, what Weintraub – and my own family – found out is that the system is rigged against timely diagnosis. If you are unlucky enough to fall outside of an arbitrarily strict definition of Lyme, if you fail to test positive on a primitive lab test that's known to be unreliable, you are denied treatment.

Fortunately for Weintraub, her symptoms responded to out-of-the-mainstream treatment. Otherwise, the Discover magazine editor and author of 17 books likely would have remained too debilitated to accomplish the hard-hitting investigative journalism of "Cure Unknown." In it, she digs deeply into the history, science, personalities and financial dealings that make up the strange landscape of Lyme disease.

Two distinct sides have emerged in what have aptly been called "The Lyme Wars." Camp 1 is made up of scientists who first defined the illness in the medical literature, and who continue to control much of the research and official discussion of Lyme disease. This side has produced highly restrictive Lyme treatment guidelines that have been adopted by the Centers for Disease Control and Prevention and most insurance companies. Camp 1 has a stranglehold on how Lyme is defined and treated. Doctors who buck the status quo can face grave consequences. And patients who do not improve after the two-to-four weeks of treatment the guidelines permit are essentially booted out of the system.

Camp 2 consists of Lyme patients themselves, and a group of doctors who recognize the limitations of mainstream medicine's response to Lyme and are willing to go beyond its narrow strictures. The Lyme treatment of choice for these doctors is often long-term antibiotics, which is anathema to Camp 1. Camp 2's doctors are demonized by the establishment, and some have even lost their licenses for treating outside the Lyme guidelines. Yet, these mavericks have a good track record for actually improving the health of Lyme sufferers who have otherwise been abandoned by the medical system.

"Cure Unknown" is a tale of biological complexities, scientific turf battles, political intrigue, human egos and money – lots of it. It also sounds a warning for what is shaping up to be a major public health disaster. Right now, Lyme disease surpasses AIDS in the number of new cases per year in the United States. It's not a problem that will go away on its own.

DISCOVER Magazine, June 2008

Cure Unknown: Inside the Lyme Epidemic
One moves to the suburbs to afford one's family a better, healthier life. So thought science journalist (and DISCOVER editor) Pamela Weintraub when she, her husband, and their two sons left New York City for the woods of Chappaqua in Westchester County, New York. Instead, what would ensue was a blight—upon their home, their lives, their sanity. The culprit: Lyme disease, a too-often misdiagnosed, mistreated, and misunderstood illness. Cure Unknown details one family's courageous efforts to be diagnosed and treated in the face of heated controversy over the nature of their disease. Weintraub deftly weaves top-notch research and reporting on this malevolent infection, caused by the bite of a common deer tick, with the personal narrative of a family's encounters with ignorance and bias while fighting a tenacious, disabling illness. The result is a compelling read that is also important journalism. With an estimated 200,000 new cases each year, the Lyme disease epidemic deserves our attention, and Cure Unknown is poised to become the definitive guide to understanding this illness.

— Patrice Adcroft

LymeInfo.Net, June 28, 2008

When I received my copy of Pamela Weintraub's new book, CURE UNKNOWN: INSIDE THE LYME EPIDEMIC (St. Martin's Press), I was eager to read it and eventually found it difficult to put down. However, it was more than my own personal experience with tick-borne illness that piqued my interest.

I longed to read how Pamela Weintraub, a competent science journalist who had deeply personal experiences with Lyme disease, would tell the complex story of Lyme disease. To me, this story is one that has been crying to be told and Pamela Weintraub is perfectly poised to tell it.

At first, I was reminded of Polly Murray and her superb 1996 book about the early years of Lyme disease, THE WIDENING CIRCLE: A LYME DISEASE PIONEER TELLS HER STORY (St. Martin's Press). Weintraub picks up the trail with stories of herself and others who are struggling to find explanations for the unusual medical problems in their families that baffled every doctor they met. Today, we know much more about the pathogens transmitted by the bite of a tiny deer tick than we did over thirty years ago. Sadly, we are still reading about people in dogged pursuit of the same answers.

The horrific treatment by medical professionals toward sick children described in CURE UNKNOWN is cruel, incomprehensible and devastating. The indiscriminate determination of who actually has Lyme disease and who doesn't is just one example. A patient in Weintraub's book goes to several doctors who repeatedly determine that he definitely does not have Lyme disease. A few years later a test shows him to be unequivocally positive. Nevertheless, when the patient fails to improve after a few months of antibiotic treatment, he is deemed to no longer have Lyme disease, is refused further treatment and is told his problem must be psychiatric. Real doctors behave this way and they do not need a rational explanation to justify their actions. This is Lyme disease and if you ever thought it was the disease du jour¯ you are in for a rude awakening.

What sets CURE UNKNOWN apart, and makes it so compelling to read, is how patient histories are told in the context of an unfolding and fractious divide within the medical and scientific research communities. Readers will learn about patients who are largely ignored by the mainstream medical community with a disdain, derision and passion rarely seen with other illnesses. Weintraub's deft use of wry humor allowed for such distasteful behavior to be a bit easier to swallow. Her exhaustive research, interviews, and knack for explaining complex scientific information combined to keep me engaged and eager to finish the book. Seasoned veterans of Lyme battles of their own will also find bits and pieces here that they will learn about for the first time.

I had to wonder, in the end, how many Lyme patients experience the same tragic challenges as those profiled in this book. We may never know the answer. That's because there is still no gold-standard test to distinguish between patients with Lyme disease from those without. This kind of research, oddly, has not entirely been the focus of the research community since Lyme was first discovered over thirty years ago and Weintraub illuminates this conundrum quite well. Her book should alter the landscape upon which the tiny deer tick thrives and the Lyme patient wanders in a solitary search for answers.

-Rick Laferriere

BOOKLIST, *Starred Review,, May 2008

Weintraub, Pamela (Author)

May 2008. 400 p. St. Martin's, hardcover, $24.95. (9780312378127). 616.9.

When journalist Weintraub and her family moved from their cramped, treeless home in New York City to a spacious, tree-shaded manse in suburban Chappaqua, they believed it was all good. Or at least the big yard with deer cavorting in nearby woods would be better, healthier, than their city digs. Within a short time, first one son, then the other, became sick with a series of increasingly debilitating disorders. Soon Weintraub and her husband presented a laundry list of similar complaints, many serious enough to threaten to sidetrack their careers. The family turned to local physicians for answers. Lyme disease, an infection communicated by the bite of a tick carried by those cavorting deer, was mentioned but discounted for a variety of reasons. Weintraub turned to the most prestigious medical centers New York had to offer and got similar responses. Hearing one implausible diagnosis after another and, worse, seeing no improvement in their individual conditions, the credentialed science writer began independent research and turned up what amounts to a controversy as contentious as Creationism versus evolution. Weintraub turns a tragic (her children are still unwell) yet eye-opening experience into a shocking exposure of what can happen when egos, greed, and peer pressure supercede objective evidence, allowing patients to suffer chronic, disabling illness.

— Donna Chavez

Library Journal, May 2008

Cure Unknown: Inside the Lyme Epidemic
Weintraub, Pamela (Author)
index. ISBN 978-0-312-37812-7. $24.95. MED

Verdict: Though clearly biased in favor of the existence of chronic Lyme, this book is exhaustively researched and is highly recommended for public and academic libraries.

Background: Weintraub, an experienced science journalist, began researching Lyme disease when her family became seriously ill after moving to the New York countryside. She soon met many people with similar complaints—persistent fatigue, pain, and cognitive problems. Long-term doses of antibiotics helped many of these patients, but most doctors hesitated to prescribe them partially because of the side effects from overusing antibiotics but also from fear of legal accusations of mistreatment. Weintraub aptly illustrates the frustrations of the patients as well as the trials of maverick doctors who are attempting to treat patients the best way they can. Lyme disease was rigidly defined at its outset, and most of those early descriptions are still accepted by mainstream medicine. Although several promising research studies are cited here, there are still many problems and misconceptions to be resolved, and the controversy continues to play out in both the media and the medical literature.

— Tina Neville, Univ. of South Florida at St. Petersburg Lib.

Hartford Courant
courant.com/news/health/hc-lyme0713.artjul13,0,3011260.story
Courant.com
The View From Inside The 'Tick Tornado'
Journalist-Patient Explores Lyme Disease
By BILL WILLIAMS
Special to The Courant
July 13, 2008

Pamela Weintraub's introduction to Lyme disease began innocently enough.

"Starting in the early 1990s, after we moved from a city apartment to a wooded property in Westchester County, New York, our family began to get sick," she writes in this sober but scary book.

The author's knees became so swollen that she had to descend steps while sitting. Her husband, Mark, was so mentally incapacitated that he was forced to quit his job as a newsletter editor. Their youngest son, David, slept 15 or more hours daily and had to drop out of school. Their other son, Jason, spent his days in a bathtub, drifting in and out of consciousness while steam eased his pain.

Did they have Lyme disease? It took years to get a positive diagnosis, and even now it is not clear if one or more family members had Lyme alone, or perhaps a combination of ugly tick-borne ailments.

A science and health journalist, Weintraub writes clearly and passionately about a mysterious illness that has confounded physicians, patients and scientists for more than three decades, while she tries to balance personal narrative and objective journalism.

"Cure Unknown" has particular relevance to Connecticut. The first cluster of cases was discovered in Old Lyme, hence the name Lyme disease.

Debate about the diagnosis and treatment of Lyme is "one of the most vicious medical wars we've ever seen," Weintraub writes. One tempest involves short-term vs. long-term antibiotic treatment. Some scientists and doctors claim that Lyme is relatively easy to diagnose and treat. If symptoms persist, they argue, then the illness must be something else. Others respond that tests for Lyme are unreliable and argue that many people face a lifetime of debilitating mental and physical ailments unless they receive long-term antibiotic treatment.

After Lyme was identified as a bacterial infection, health agencies recommended early diagnosis and short-term antibiotic treatment. However, symptoms vary so widely and the tests are so unreliable, Weintraub says, that countless patients with Lyme are sent home without treatment, leading to long-term illness.

Lyme has been linked to chronic fatigue, psychiatric illness, Alzheimer's, seizures, ALS, fibromyalgia and Parkinson's, but the nature of the links is murky. Does Lyme spark other illnesses or merely mimic them?

Doctors have found themselves trapped between patients and regulators. Patients flocked to New Haven physician Charles Ray Jones when he began treating chronic Lyme with long-term antibiotics. But Lyme experts at Yale and the University of Connecticut called him a fraud, and the state Public Health Department last year fined Jones and placed him on probation.

Physicians increasingly are afraid to treat Lyme aggressively for fear of being similarly hauled before medical boards. Weintraub concedes the dangers of long-term antibiotic treatment, including the creation of "superbugs" resistant to antibiotics, but asserts that the risk must be weighed against the reality that untreated patients can face a lifetime of suffering.

The spread of Lyme has been linked to a staggering rise in the deer population and to the construction of suburban houses "in the path of the tick tornado." After years of living near woods in a "paradise" that proved toxic, the author and her family moved four years ago to a high-rise in Stamford to escape the ticks.

Although Weintraub strives to fairly report all sides of the Lyme debate, she admits up front that her bias is toward patients. Too often, though, she relies on what patients tell her about their doctors without getting the doctors' side of the story.

"Cure Unknown" also occasionally veers into arcane science, almost as if Weintraub were writing for a medical journal rather than a general audience.

That said, Weintraub has written a comprehensive and compassionate guide to a dreaded illness named after a bucolic, tick-infested town on Long Island Sound.

Bill Williams of West Hartford is a free-lance writer and a member of the National Book Critics Circle. Copyright © 2008, The Hartford Courant

Boston Globe, August 17, 2008

Shelf Life: Underground Epidemic by Jan Gardner

In the early 1990s, Pamela Weintraub, her husband, and their two young sons moved to Chappaqua, N.Y. Soon they all became ill with exhaustion and nausea, and eventually were diagnosed with Lyme disease. The road to recovery was difficult.

Weintraub, a science journalist, set out to investigate the controversies surrounding the diagnosis and treatment of Lyme disease. Her book, "Cure Unknown: Inside the Lyme Epidemic" (St. Martin's), weaves together an analysis of the science behind the disease with her family's story. Now a senior editor at Discover magazine, Weintraub lives with her family in a high-rise apartment building in Stamford, Conn.