Features & Columns

Lyme Time

The tick-borne disease is on the rise in California, fueling conspiracy theories and treatment controversy
Illustration by Taylor DuBose

Kris Newby thought she was done with Lyme disease. The Palo Alto resident had spent years battling the infection and its complications, all while dealing with condescending medical professionals. Some told her she was imagining her symptoms; others recommended she see a shrink.

Ultimately, Newby—who traces her case back to a 2002 tick bite near Martha's Vineyard—was diagnosed with Lyme. She then devoted more than three years to co-producing a well-received 2014 documentary, Under Our Skin, which shed light on the United States' largely hidden Lyme epidemic, the plight of Lyme patients and the intense medico-political controversies surrounding nearly every aspect of the disease.

An engineer by trade, Newby was ready to move on. She had accepted a job as a science writer for the Stanford School of Medicine. But then came the fateful video—sent to her home by a filmmaker she knew. It was then that she learned about Willy Burgdorfer, the famed medical entomologist credited with uncovering the cause of Lyme.

Here he was, on camera, insisting that the epidemic was likely directly linked to a secret offensive biological weapons program—a program which he worked on for the US government during the Cold War.

Newby tried to peddle the story to some well-known journalists, but they declined to pursue it for a number of reasons. Newby says she was told it would be too difficult and time-consuming to report, and that might not even pan out. And so, with extreme reluctance, Newby says she decided to pursue the story on her own.

"If somebody didn't look into this," she writes in her new book, "the secret would die with Willy. The better angel in me wouldn't let that happen."

Bitten: The Secret History of Lyme Disease and Biological Weapons was published in May. While plenty in the medical community have dismissed its claims, Newby's work has caught the attention of at least one lawmaker, and she hopes the book will lead to a greater understanding of Lyme and other tick-borne diseases, including anaplasmosis/ehrlichiosis, spotted fever rickettsiosis (including Rocky Mountain spotted fever), babesiosis and tularemia. Any insights that come from her reporting could result in better diagnosis, treatment and prevention of Lyme and other tick-associated infections currently on the rise in California—a region not commonly associated with such diseases.

SPIRAL OUT

Californians account for only a minute slice of the roughly 1,000 Americans estimated to contract Lyme on average every day (300,000 to 400,000 will get the disease this year).

Official disease surveillance statistics—confirmed and probable cases reported to the CDC—tell us that in a typical year, about 110 Californians contract Lyme. But experts on all sides agree that Lyme is, like most infectious diseases, vastly underreported, perhaps by a factor of 10 or more.

Lyme symptoms sometimes don't show up for months after an initial exposure. When they do, the cause is commonly not recognized by local doctors—both because the disease remains relatively rare in this region and because it can be notoriously difficult to diagnose, even for experts. Meanwhile, infected individuals face debilitating physical and emotional pain. Once the disease is accurately diagnosed, it still often takes years to effectively treat.

Although prominent medical academics have dismissed Newby's assertion that ticks were deliberately weaponized and wound up getting into the wild as patently absurd, her book set off alarm bells on Capitol Hill. Congress is considering ordering the Pentagon to conduct an investigation into what Newby calls "an American Chernobyl."

While to some it sounds like a plotline from The X-Files, Newby trusts her primary source, Burgdorfer. One of the world's most prominent experts on Lyme until his death in 2014, Burgdorfer claimed he was part of a secret program that sought to turn ticks into bioweapons. He detailed his involvement in the program to Newby only months before he died.

In 1982, Burgdorfer was credited with identifying the bacterial cause of Lyme disease, about six years after the malady burst into public consciousness. In 1976, The New York Times ran a front page report on a mysterious outbreak of unusual arthritic conditions among children and a few adults in and around Lyme, Connecticut. Health officials eventually confirmed their own suspicions that the condition was infectious and spread by deer ticks.

The town of Lyme sits 20 miles north of the Plum Island Animal Disease Center of New York—home to the secretive Lab 257, where the US Army Chemical Corps conducted biological weapons research in the early 1950s.

Bitten asserts that the United States military deliberately engineered ticks to carry debilitating but non-lethal diseases. Newby's book—along with other published works on the subject—led one US congressman, Rep. Chris Smith, R-New Jersey, to take legislative action. Over the summer, Smith called upon the Defense Department's inspector general to look into any government efforts to weaponize ticks between 1950 and 1975.

Over the course of four interviews with Burgdorfer, Newby says he confessed to her (and separately, to independent filmmaker Tim Grey) that he spent two decades working for the US government to weaponize ticks and other insects in an apparent attempt to keep America on a level playing field with the Soviets in the arena of biological warfare.

Despite his revelations to Newby and Grey, who tipped her off to his interview, Newby says she never felt the scientist was completely forthcoming. And her reporting bore that out when a second tipster gave her access to a collection of Bergdorfer's lab notes on early Lyme patients' blood tests. These notes contain findings that he never included in official reports to the US government or in the scientific literature he published—namely that the blood samples from the earliest Lyme cases contained other dangerous pathogens. In addition to the Lyme spirochete (a spiral-shaped bacterium responsible for the disease), Bergdorfer's records include references to researchers feeding ticks agents designed "for spreading anti-personnel bioweapons."

In his final discussion with Newby in early 2013, Burgdorfer, then 88, was in the latter stages of Parkinson's disease and was suffering from diabetes. She concedes that Burgdorfer's speech wasn't very clear at that point. But she believes he confirmed what he had told Grey on film: The spread of Lyme disease resulted from the release of biologically enhanced ticks developed during the Cold War.

NATURAL HISTORY

South Bay denizens are no strangers to ticks. But most locals know the parasitic arachnids more for their creepy habit of growing fat off the blood of their hosts than as carriers of Borrelia burgdorferi—the spirochete that causes Lyme.

California's first reported case of Lyme came out of Sonoma County in 1978, just a few years after the nation's first known case sprang up in New England.

Annual maps prepared by the Centers for Disease Control and Prevention show new Lyme cases spreading steadily across the Northeast and the Upper Midwest. This is due in part to climate change and human encroachment on tick habitat—but the California Department of Public Health says the incidence of infection has remained fairly constant in California for the past 10 years. The same is true in Santa Cruz.

Santa Cruz County is a bit of a "sweet spot" for the spread of Lyme disease, says Amanda Poulsen, a vector-control specialist who regards Lyme as the greatest vector-borne disease threat in the county. That's due in part to the region's habitat—which is quite hospitable to the western blacklegged tick (Ixodes pacificus). The abundance of outdoors-loving humans is also a factor.

In Santa Cruz County, the incidence of reported Lyme cases is 10 times higher than in the state as a whole—2.1 cases per 100,000 residents per year versus 0.2. (Compare this with a rate of more than 100 per 100,000 people in Northern New England.)

First, the cool coastal fog keeps the forest floor moist so the ticks don't dry out. And the abundance of day hikers, backpackers, mountain bikers, campers and gardeners creates a veritable smorgasbord for the diminutive eight-legged parasites.

The western blacklegged tick—a close relative of the species that spreads Lyme in the East—thrives best in regions with relatively warm, wet winters along California's northern coast. That's why parts of Mendocino, Trinity and Humboldt counties have the highest incidence of reported Lyme cases in the state.

Although Santa Cruz has an elevated risk of Lyme on a per capita basis, in terms of sheer numbers, Santa Clara County counts more confirmed Lyme cases than any other in the state. That's on account of its large population of nearly 2 million people and, one might suspect, residents' tendency to recreate in nearby Santa Cruz.

CHRONIC PROBLEM

Unlike in the Northeast and Upper Midwest, where Lyme disease has been on the mind of every community physician for decades, its relatively low incidence on the West Coast means most local doctors have little experience with it.

This a problem, as Lyme disease is a complex affliction that can take months or years to properly identify. If not caught early, it can leave the hardest hit suffering from a litany of debilitating symptoms, including extreme fatigue, severely arthritic joints, a frightening "brain fog" and speech problems.

There are two warring factions within the medical community as it relates to Lyme. One side sees the other as seeking to overdiagnose and overtreat Lyme, while the other sees their rivals as underdiagnosing and undertreating it.

This plays out in a fiery dispute over what Lyme advocates and allied so-called "Lyme-literate" doctors call "chronic Lyme disease" and medical academics call "post-treatment Lyme disease syndrome."

It's more than an argument over semantics; it is an attempt to accurately characterize the cause of symptoms that return or persist even after patients have been treated with a standard two- to four-week course of antibiotics. These symptoms include fatigue, low fever and hot flashes, night sweats, sore throat, swollen glands, sore throat, joint stiffness and pain, depression, headaches, dizziness, chest pain, sleep disturbances and more.

The Infectious Diseases Society of America, which wrote and approved the federally accepted Lyme diagnosis and treatment guidelines, insists "chronic" Lyme is a misnomer. IDSA and its followers prefer the "post-treatment Lyme disease syndrome" terminology and advocate for limited use of antibiotics when treating Lyme.

On the other side, where Newby's sympathies clearly lie, is the International Lyme and Associated Diseases Society. ILADS, composed of a community of doctors and backed by Lyme patient advocates, contends the criteria for confirming Lyme are much too rigid and that the medically accepted blood test is wildly inaccurate.

ILADS, which has a set of Lyme treatment guidelines divergent from the IDSA, argues that given the lack of reliable diagnostic tools and the clinical complexity of Lyme, doctors need more leeway. Physicians, they say, should use their own judgment and experience as they consider the totality of patients' circumstances and treatment desires.

GUMSHOE: Writer and former Lyme patient Kris Newby says there is much to be uncovered about the origins and treatment of Lyme. Photo by Chuck Carroll

They point out that the Lyme spirochete has a range of properties that make it devilishly difficult to detect in the blood after it has been in the body for some time.

According to ILADS, the spirochete dons a disguise so that the antibodies sent out by the immune system to destroy it do not recognize it. It can drill into various tissues as well, and hide out in the heart (Lyme carditis), the joints (Lyme arthritis) and even the brain, causing serious neurocognitive problems.

Just because the standard blood-based tests do not detect the germ, they say, doesn't mean it's not there, embedded out of sight. Those who take this viewargue that the risk of long-term antibiotic use under the guidance of a competent doctor, is outweighed by the improvement in patients' quality of life. Some studies have shown that chronic Lyme sufferers are at heightened risk of depression, suicide and job loss than the population as a whole.

BITING

Newby's assertion that the government weaponized ticks has been met with deep skepticism and borderline derision. The accusation has been dismissed as a kooky, scientifically ungrounded theory pushed by people who simply won't listen to facts.

Many doctors in academic medicine reject the notion that Burgdorfer would have helped create offensive biological weapons. After all, he spent his entire career working for the US Public Health Service, which is now known as National Institutes of Health; that agency's stated mission is to "enhance health, lengthen life and reduce illness and disability."

"There's just no credible evidence" to support the assertion or that the prominent scientist at the heart of the book was involved in any weapons research, Michael T. Osterholm, the director of the Center for Infectious Disease Research and Policy at the University of Minnesota, told the Washington Post.

"This is again another one of those unfortunate situations where the science fiction of these issues" obscures the truth, Osterholm says.

Dr. Amesh Adalja, an infectious disease expert and senior scholar with the Johns Hopkins Center for Biosecurity, strongly backs the IDSA's conservative guidance on the use of antibiotics—and rejects Newby's claim that the scourge of Lyme disease is the result of a bioweapons program.

"I don't believe any Pentagon investigation is warranted or would change the facts surrounding the epidemiology of Lyme disease in the US," Adalja says. "It is well established that the Lyme bacterium's proliferation in ticks and reservoir species predates any alleged military experiments by considerable time.

"When you look at patients with chronic Lyme disease, many of them…have no evidence of inflammation, meaning their body doesn't show any kind of reaction when subjected to objective, evidence-based tests. The tests don't show any evidence of infection."

In addition, Adalja says, "Multiple large clinical trials have shown that prolonged antibiotic therapy just isn't effective." That includes the largest such trial ever, the results of which were published in the journal Neurology earlier this year.

TRUE BELIEVER

Forensic studies show that Lyme disease existed long before Newby says the US began experimenting with weaponizing ticks; this fact is often put forward by skeptics who doubt Newby's claims.

Newby, however, has no doubt. In fact, she says, Burgdorfer's involvement with weaponizing ticks is just the tip of the iceberg.

"It's a complicated story," she says. "It not just that the Lyme spirochete was weaponized. It was this other stuff (other, undisclosed potential Lyme agents) that was covered up. … As a journalist, you get a whistleblower and you have to say, ‘Why is he telling me this?' This would destroy his career. It would be like Buzz Aldrin saying, ‘I faked the moon landing.' That's how outrageous it is in the biology world."

The answer to the question—why now?—she surmises: Burgdorfer felt guilty.

Newby acknowledges that there's room for interpretation in some of her conclusions about Burgdorfer and his motivations. For example, in an interview with her, Bergdorfer made cryptic references to "the Russians" getting their hands on a dangerous pathogen he had worked on. Was he vulnerable, she asks, to the influence of foreign agents seeking information about US bio-weapons research? She suggests it's possible that the financially struggling Burgdorfer may have been tempted into taking a payoff from nefarious actors.

Despite her insinuations and conclusions, Newby's book appears to be the work of a careful researcher. She is frank about what she knows or intuits based on the breadth of her reporting, what she can't confirm, and other ways her evidence might be reasonably interpreted.

For instance, she didn't take Burgdorfer's claims of government-created weaponized ticks on faith. She sought corroboration, digging through 33 boxes of freshly processed material Burgdorfer donated to the National Archives. She examined reams of documents—including letters, drafts of his published articles and supporting lab notes that Burgdorfer collected over many years.

Newby says it is suspicious that the boxes contained none of Burgdorfer's lab notes on his greatest achievement: the discovery of the spirochete bacterium that causes Lyme. He and co-authors published his discovery in Science in 1982, and the bacteria, Borrelia burgdorferi, was later named for him.

After he died, an acquaintance of Bergdorfer's asked Newby if she was interested in reviewing documents Bergdorfer had kept in his garage and later turned over to the acquaintance. In those documents, Newby found her "smoking gun"—the blood test lab notes Berdorfer had kept secret for decades, along with information about a previously secret Swiss bank account.

Using the federal Freedom of Information Act, Newby also discovered conflicts of interest among academic researchers and federal health officials. In addition, she unearthed military documents that she contends prove the CIA released ticks in Cuba and even tracked down an agent who confirmed in a hair-raising account that he was involved.

SEARCH FOR ANSWERS

Knowing that investigators are subject to confirmation bias, Newby vetted her findings by tapping people with deep knowledge of biochemical and germ warfare. None of them waved her off the story or found her interpretations of the new evidence ridiculous. More than one advised her to watch her back if she published.

On a long table in her sunlit Palo Alto home office sit neat, tidy piles of labeled files and other artifacts from her research. Asked for a certain photo, Newby digs it out of a filing cabinet in seconds.

She seems surprised when one of an interviewer's first questions is what kind of post-publication blowback she's received, given the sensitive subject of Bitten and the dire warnings she received while researching it.

Her answer: Nothing has had made her feel unsafe or threatened. This was about six weeks after publication. But things began heating up days later, after Congressman Smith read the book.

Alarmed, the longtime-co-chair of the congressional Lyme caucus wrote an amendment to the National Defense Authorization Bill calling on the Pentagon's independent investigative arm, the inspector general, to look into the allegations made in the book.

"Bitten: The Secret History of Lyme Disease and Biological Weapons includes interviews with Dr. Willy Burgdorfer, the researcher who is credited with discovering Lyme disease," Smith said during floor debate. "The book reveals that Dr. Burgdorfer was a bioweapons specialist. Those interviews combined with access to Dr. Burgdorfer's lab files suggest that he and other bioweapons specialists stuffed ticks with pathogens to cause severe disability, disease—even death—to potential enemies.

"With Lyme disease and other tick-borne diseases exploding in the United States—with an estimated 300,000 to 437,000 new cases diagnosed each year and 10-20 percent of all patients suffering from chronic Lyme disease—Americans have a right to know whether any of this is true. And have these experiments caused Lyme disease and other tick-borne disease to mutate and to spread?" Smith asked.

For the average person who has had a brush with Lyme disease, it matters little whether the pathogen as we know it was loosed upon us by a government bioweapons. Lyme patients are far more concerned with simply getting their lives back.

For those struggling to attain an accurate diagnosis of Lyme—and for those suffering with persistent symptoms long after they have been treated for the disease—discovering the origin story of this disease might provide some comfort. However, for those afflicted with Lyme, the primary objective moving forward has to be a better understanding of this condition.

HIV/AIDS and Lyme emerged at roughly the same time. Yet over the years, there have been 11,000 clinical trials involving HIV/AIDS, compared with just 60 for Lyme, according to investigative journalist Mary Beth Pfeiffer. Research into Lyme disease is woefully inadequate.

HIV, of course, is fatal if left untreated, so some disparity is warranted. But last year, newly reported cases of Lyme easily surpassed the number of new HIV infections, according to the CDC.

Newby hopes Bitten can help raise the profile and lead to more funding for research into tick-borne diseases.

"My hope is that this book will widen the lens on our view of this problem and inspire people to more aggressively pursue solutions," she writes. Among other research needs, she says, "We need epidemiologists to analyze the ongoing spread of these diseases, incorporating the possibility that they were spread in an unnatural way."

If the Senate goes along with the House's call for an investigation into the allegations in Bitten, perhaps those suffering from Lyme and its fallout will get the answers they so desperately seek.

Bitten: The Secret History of Lyme Disease and Biological Weapons
Harper Wave
Out Now
harperwave.com