In 1968 there was a sudden outbreak of three unusual tick-borne diseases that sickened people living around Long Island Sound, an estuary of the Atlantic Ocean off the shores of New York and Connecticut. One of these diseases was Lyme arthritis, first documented near the township of Lyme, Connecticut. The other two were Rocky Mountain spotted fever, a bacterial disease, and babesiosis, a disease caused by a malaria-like parasite.
The investigations into these outbreaks were fragmented among multiple state health departments, universities, and government labs. It’s not clear if any officials were looking at the big picture, asking why these strange diseases had appeared seemingly out of nowhere in the same place and at the same time.
Thirteen years later, in 1981, a Swiss American tick expert named Willy Burgdorfer was the first to identify the corkscrew-shaped bacterium that caused the condition that we now call Lyme disease. The discovery made headlines around the world and earned Burgdorfer a place in the medical history books. As researchers the world over rushed back to their laboratories to learn as much as they could about this new organism, the two other disease outbreaks were all but forgotten.
Thirty-eight years later, the conventional medical establishment would like us to believe that it has a solid understanding of the prevention, diagnosis, and treatment of Lyme disease. It says that the tests to detect Lyme are reliable and that the disease can be cured with a few weeks of antibiotics.
The statistics show a different reality.
Reported cases of Lyme disease have quadrupled in the United States since the 1990s. In 2017, there were 42,743 cases of Lyme disease reported to the Centers for Disease Control and Prevention (CDC). The scientists at the CDC who study the spread of diseases now say that the actual cases may be ten times higher than reported, or 427,430 cases. On average, this means there are about 1,000 new Lyme cases in the United States per day.
While most Lyme disease patients who are diagnosed and treated early can fully recover, 10 to 20 percent suffer from persistent symptoms, some seriously disabling. One study estimates that Lyme disease costs about $1.3 billion each year in direct medical costs alone, but no one has assessed the full economic and societal impact of chronic Lyme, sometimes called post-treatment Lyme disease syndrome (PTLDS). Patients with lingering symptoms are often dismissed by the medical establishment, a situation that forces them to seek unproven treatments that aren’t covered by medical insurance. Many are unable to work or go to school. Some go bankrupt. Families break up. There’s a high rate of suicide among Lyme disease patients, reflected in a common saying among the afflicted: “Lyme doesn’t kill you; it only makes you wish you were dead.”
The chasm between what researchers say they know about Lyme disease and what the chronically ill patients say they are experiencing has remained an open wound for decades. Both sides are mostly right, and that the main issue is that we’re viewing this public health crisis too narrowly, through Lyme-colored glasses.
By June 10, a million New Yorkers were hatching spores in the wet warmth of their lungs.
Until very recently, I thought I had a solid understanding of the Lyme disease problem. As a former Lyme sufferer, I had firsthand experience with the disease, and how the medical system fails patients. As a researcher for the Lyme documentary Under Our Skin, I had investigated the politics, money, and human impact of the disease. And as a writer at a medical school working in a group that teaches scientists how to conduct unbiased research, I was familiar with the fault lines in our current medical system that can compromise scientific objectivity.
It took the late, great Willy Burgdorfer to teach me how to view the problem through a wider lens, through a secret history of the Cold War, when Willy and others turned ticks into weapons of war.
On June 6, 1966, an invisible man, a man who looked like everyone and no one, stepped onto a crowded subway car at the 14th Street Station in Manhattan. He was of average height and build. His thinning hair was combed over his cue-ball head. He wore a cheap suit and dark sunglasses. What looked like a photographic light meter hung off his belt, and he carried a plastic briefcase that emitted a faint whirring sound.
The man was Charles Senseney, a CIA weapons developer from the Special Operations Division at Fort Detrick and the leader of a 21-person team running a covert operation to see how vulnerable New Yorkers might be to a bioweapon attack.
As he rode on the subway car, one of his operatives stood at street level over a subway ventilation grate and opened the brown paper bag he was carrying. As an approaching train rumbled beneath his feet, he pulled out a lightbulb and shattered it over the grate. Upon shattering, it released an invisible, odorless cloud of bacteria that was sucked into the tunnel by the passing train and rapidly disseminated throughout the whole network of tunnels. The cloud held approximately 87 trillion spores of Bacillus subtilis, a bacterium thought to be harmless. It had been freeze-dried and processed into particles that mimicked the physical properties of weaponized anthrax.
For the next few hours, Senseney’s team rode around the subway system carrying bacterial “sniffers” disguised as briefcases and purses. Senseney’s “photographic light meter” was actually a device that tracked temperature and humidity. At the end of the day, one of the sensors, at the 23rd Street station, showed “calculated respiratory exposure to be 100,000 spores-a-breath five minutes after the light bulbs broke.”
“By June 10, a million New Yorkers were hatching spores in the wet warmth of their lungs,” said Senseney. Had it been anthrax in the lightbulbs, the spores would’ve “put New York out of commission.”
This was one of many open-air tests conducted in the 1960s and ’70s by the CIA, the U.S. Army, and the Department of Defense. The coastal tests were conducted by personnel in Project Shipboard Hazard and Defense (SHAD), who sprayed simulated and live biological and chemical warfare agents over the North Atlantic and Pacific Oceans near the Marshall Islands, Hawaii, Puerto Rico, and the California coast. Land-based tests took place domestically in Alaska, Hawaii, Maryland, Florida, Utah, and Georgia, and internationally in Panama, Canada, and the United Kingdom. In 1964 and 1965, they used Bacillus subtilis to simulate the physical characteristics of the smallpox virus in airborne tests in Washington, DC’s, national airport and Greyhound bus terminal.
Some of these human experiments were revealed through the Senate’s 1976 Church Committee Report, an independent Church of Scientology investigation, and a 2003 class-action lawsuit led against the U.S. government on behalf of test subjects and veterans involved in SHAD projects. But a few of these open-air tests are still classified, the records have been destroyed, or the details of the operations were never put in writing.
In its 1966 budget report, the Pentagon noted that 57 U.S. universities and affiliated research institutions were among the top 500 defense research contractors. At the same time, the anti–Vietnam War movement was being fomented on campuses, and students and scientists were beginning to question their institutions’ involvement in chemical and biological weapons research.
One of the most vocal critics was Joshua Lederberg, PhD, a 1958 Nobel Prize recipient for his pioneering work on bacterial genetics while at the University of Wisconsin. After he moved to Stanford, Lederberg began early research on gene splicing, and started to understand the responsibilities that can come with creating new life forms. This concern motivated him to start lobbying policymakers to draft a treaty to ban biological weapons.
“The large-scale deployment of infectious agents is a potential threat against the whole species: mutant forms of viruses could well develop that would spread over the earth’s population for a new Black Death,” said Lederberg in a Washington Post editorial on September 24, 1966. He added, “The future of the species is very much bound up with the control of these weapons. Their use must be regulated by the most thoughtful reconsideration of U.S. and world policy.”
But his NIH director refused, saying no one cared about a disease that could easily be cured with antibiotics.
A month later, the army’s Biological Subcommittee Munitions Advisory Group thumbed its nose at this “national pronouncement made by prominent scientists.” Downplaying the scientists’ concerns, Fort Detrick’s scientific director, Riley Housewright, said that “such publicity would probably best be considered to be an annoyance.” The advisory group then continued discussing its plans for genetic manipulation of microbes, new rickettsial and viral agents, and the development of a balanced program for both incapacitating and lethal agents.
Evidence that rickettsias were being tested as possible lethal agents was hiding in plain sight in “lab safety” studies published by university researchers. In 1966, one of these experiments was contracted out to Samuel Saslaw, a professor of infectious diseases at Ohio State University.
For this military-funded study, Saslaw misted 68 monkeys with aerosolized droplets of a lethal dose of Rickettsia rickettsii, a disease that the study’s authors noted is spread in nature only by tick bites. They described the symptoms of the first monkey to die. On the fourth day of exposure, its temperature rose to 104.2° F. On the sixth day, the temperature spiked to 105.8° F. On the seventh, the monkey sat quietly in its cage with its head hanging and its arms clasped around its body. On the eighth, it collided with the side of its cage and fell down. Its heart sounds were weak and indistinct. On the ninth day, it experienced delirium, extreme weakness, and dehydration. On day ten, it went into a coma and died. One photo showed a necrotic monkey’s paw, human-like, with blackened nails and fingertips.
At the end of the article, the researchers concluded: “Rocky Mountain Spotted Fever was produced in 56 of 60 rhesus monkeys following exposure to aerosols. . . . 42 of 56 died. . . . Since the disease so closely simulates that observed in naturally occurring infection in man, one should be aware of this potential route of infection, particularly among laboratory personnel.”
On March 13, 1968, during a chemical weapons experiment, a spray nozzle on a military aircraft malfunctioned over Dugway Proving Ground, allowing VX nerve gas to kill a flock of sheep in the Skull Valley area. It could’ve been worse, especially if the cloud had drifted over the heavily populated Salt Lake Valley. The incident was an international scandal. The reputational damage to the chemical and biological weapons program could not be undone, and the accident set in motion a chain of events that would end in President Richard M. Nixon terminating the U.S. offensive biological weapons program on November 25, 1969.
“Nixon sold us down the river,” said Murray Hamlet, DVM, a former director of research at the U.S. Army Research Institute of Environmental Medicine. Hamlet was working at Fort Detrick when most of the bioweapons researchers were let go with no warning.
“We had the best immunologists in the world, and all of a sudden they had to find new jobs. What were they supposed to do, start selling ice cream in town?” he asked.
As the projects under the bioweapons program began winding down, Willy was optimistic that he could restart his research on spirochetes. But his NIH director refused, saying no one cared about a disease that could easily be cured with antibiotics. As a consolation prize, Willy began investigating rickettsial outbreaks in South Carolina, Tennessee, and Kentucky. He was also assigned to the Armed Forces Epidemiological Board’s Commission on Virus and Rickettsial Diseases. This commission, run out of Walter Reed Army Institute of Research, had previously worked on the offensive bioweapons program, but once the Nixon decision took effect, it shifted its emphasis to defensive projects: vaccines, protective measures, and detection systems.
During this transition, Dale Burgdorfer had a lot of “ups and downs.” She would tire easily, and retreat into silence. Because of his concern for her, Willy had to cancel a trip to a rickettsial symposium at the Czechoslovak Academy of Sciences.
Then, on July 21, 1969, Willy’s mother wrote: “My dear Willy, eight days ago they picked up your Pa around 2:30 from our house forever.” His father had leaned a ladder up against a cherry tree in the pouring rain, to yell and swipe at a flock of birds trying to eat his ripe cherries. The ladder slipped, and he fell and hit his head on a stone. Later he suffered a fatal heart attack.
“Now the birds have their cherries,” Willy’s mother wrote.
Kris Newby Explores the Murky History of Government Experiments with Bug-Borne Illness