Five years later, a bacteriologist named Willy Burgdorfer figured out what was happening in Old Lyme, Connecticut. Burgdorfer had studied in Basel, Switzerland, before coming to Hamilton, Montana, to work at the Rocky Mountain Laboratories, part of the United States Public Health Service. The Rocky Mountains are loaded with the same arthropod that would prove to be the cause of the Old Lyme outbreak: ticks. In 1982, Burgdorfer dissected the guts of Ixodes ticks and found corkscrew-like bacteria similar to those that caused syphilis. When Burgdorfer injected these bacteria into rabbits, they developed a rash identical to that found in Old Lyme. The bacteria were later called Borrelia burgdorferi.
With the bacteria that caused Lyme arthritis in hand, understanding the disease got a lot easier. Researchers could now develop methods to detect bacterial proteins and genes, enabling them to tell where the bacterium went, when it went there, how the body responded, and whether antibiotics worked. Within a few years it became clear what Lyme disease was. And what it wasn’t.
Lyme disease occurs in three stages. First, ticks inject bacteria under the skin, where they reproduce and move outward, causing the characteristic bull’s-eye rash: red, with heaped-up borders and central clearing. This first stage lasts days to weeks.
During the second stage, Lyme bacteria spread into the bloodstream and travel to other parts of the body. Patients might experience fatigue, fever, swelling of lymph nodes, more bull’s-eye rashes, and neck, muscle, and joint pain (arthralgia). In about 15 percent of patients, the bacteria cause meningitis (inflammation of the lining of the brain and spinal cord) with neck stiffness and fever; encephalitis (inflammation of the brain itself) with headache and intolerance to light; facial palsy (also called Bell’s palsy), in which one side of the face droops uncontrollably; and neuritis (inflammation of the nerves), causing pain, weakness, and numbness. In about 5 percent of patients, bacteria cause carditis (inflammation of the heart), disrupting electrical pathways necessary for normal heart rhythms; symptoms include fainting and chest pain. Interestingly, even without antibiotics, all of these symptoms usually resolve.
During the third stage, which occurs months after the tick bite, about 10 percent of untreated patients develop arthritis, mostly in large joints like the knee. In some untreated patients, arthritis persists or recurs.
When Allen Steere reported the outbreak in Old Lyme, he predicted that antibiotics wouldn’t make a difference, impressed as he was that symptoms often disappeared without them. But Steere was wrong. Many studies have now proved that people treated with antibiotics resolve their symptoms more quickly and, if treated early, are less likely to progress to later stages. As a consequence, antibiotics are given by mouth or intravenously for two to four weeks.
In Lyme disease, alternative healers saw an opportunity. Typically, they catered to those for whom medicine offered little, such as women with menopause or children with autism. Lyme allowed them to expand their repertoire. Claiming that Lyme had a fourth stage, which they called Chronic Lyme disease, they argued that Lyme bacteria were the real cause of diseases like autism, chronic fatigue syndrome, fibromyalgia, reflex sympathetic dystrophy, homicidal behavior (“Lyme rage”), birth defects, Parkinson’s disease, multiple sclerosis, and Lou Gehrig’s disease. Because only they knew of this fourth stage, they called themselves “Lyme Literate” doctors, warning patients that they might have Chronic Lyme if they suffered weight change, hair loss, sore throat, menstrual irregularity, upset stomach, constipation, diarrhea, cough, headache, neck pain, lightheadedness, motion sickness, poor balance, wooziness, tremor, confusion, difficulty concentrating, forgetfulness, mood swings, disturbed sleep, or hangovers after drinking alcohol.
The so-called Lyme Literate doctors created an industry. They wrote books like Beating Lyme, The Lyme Disease Solution, Healing Lyme Disease Naturally, The Top 10 Lyme Disease Treatments, and Insights into Lyme Disease Treatment: 13 Lyme Literate Health Care Practitioners Share Their Healing Strategies. They made a movie titled Under Our Skin that bravely told the story of Chronic Lyme disease and the fight for recognition. “What has gotten under our skin,” said the director, “is not just a microorganism, but medicine itself.” The movie featured a pathologist, Alan MacDonald, who, after setting up a laboratory in his own basement, found the long-lived bacteria he believed caused Chronic Lyme, trapped in an ominous biofilm. It featured doctors like Joseph Burrascano, from East Hampton, New York, and Joseph Jemsek, from Charlotte, North Carolina, who had devoted their lives to treating Chronic Lyme. And it told stories of patients who, after receiving a variety of alternative therapies, had recovered from debilitating pain and fatigue. The movie also included uncaring mainstream doctors—supposed experts in Lyme disease—who denied that Chronic Lyme even existed, passing off sufferers as cranks, malingerers, or psychiatric patients. It wasn’t hard to tell the good guys (Lyme Literate doctors and their patients) from the bad guys (everyone else). Under Our Skin won awards at several film festivals and was a nominee for Best Documentary Feature at the Academy Awards. The movie also hinted at how deeply alternative healers had reached into their grab bag, with therapies ranging from the predictable to the unimaginable. Lyme Literate doctors offered:
Vitamins such as A, B12, C, and D given in high doses by mouth or intravenously.
Supplements such as beta-carotene, glutathione, glutamine, 5-hydroxytryptophan, alpha-lipoic acid, chromium, magnesium, coenzyme Q10, omega-3 oils, inositol, gamma-aminobutyric acid, L-threonine, linoleic acid, grapeseed extract, folic acid, zinc, chlorella, digestive enzymes, and probiotics.
Herbs and other natural products such as turmeric, ginger, garlic, curcumin, astragalus, aloe vera, cat’s claw, Japanese knotweed, andrographis, Stephania root, devil’s claw, white willow bark, Boswellia, kava, green tea, St. John’s wort, valerian root, slippery elm, kefir, marshmallow root, licorice root, bovine colostrum, olive leaf extract, sarsaparilla, lauricidin, Siberian ginseng, silicon, resveratrol, melatonin, nettle, capsaicin cream, bromelain, humperzine, vinpocetine, carnitine, periwinkle, hawthorn, khella, red root tincture, capryl, and passion flower.
Techniques such as hyperbaric oxygen, intravenous hydrogen peroxide, acupuncture, magnets, enemas, sweat lodges, lymphatic drainage massage, intravenous chelation, laser energy detoxification, reverse spin therapy, biophoton therapy, ozone saunas, and emu oil.
Homeopathic remedies such as arnica.
And diets that prohibit gluten and casein.
The use of vitamins, supplements, herbs, diets, homeopathy, saunas, oils, chelation, acupuncture, and magnets are typical fare from the alternative medicine menu. But Lyme Literate doctors have shown a level of imagination well beyond that of their colleagues. Wolf Storl claims that Chronic Lyme can be treated with teasel, a common roadside weed (Dipsacus sylvestris). In his book, Storl gives specific instructions on how to effect the teasel cure, recognizing that it’s not just the plant but the plant’s spirit that’s important. (According to Storl, teasel is affiliated with the planet Mars.) “One takes time with the plant,” he writes, “sits down facing east, the direction of the rising sun, and opens all one’s senses regarding it. Before getting into this meditation, one can burn dried sacred herbs—prairie sage or mugwort, for example—and smudge oneself. After contacting the plant spirit and asking for its help, one can dig out the root or harvest the leaves.” Storl’s book is packed with testimonials. “I take three full tablespoons a day,” writes Dirk, “which is wonderfully bitter like medicine should be. Now, no more pain.” The teasel cure isn’t limited to people; dogs and Arabian horses have also apparently benefited.
Another imaginative treatment for Chronic Lyme is the Rife machine, invented by Royal Raymond Rife in the 1930s to treat tuberculosis. Bryan Rosner has written two books about Rife machines for Chronic Lyme. Rosner explains, “a Rife machine delivers … an invisible electromagnetic field to the body. The field passes through the entire body and disables targeted microorganisms.” Rosner’s books, like Storl’s, are filled wit
h glowing testimonials. “My daughter was bedridden for five months,” writes Robin. “Using Rife machines, she won the state table tennis junior championship.” In 2006, more than three hundred people attended a Rife machine convention in Seattle. These machines, which perform the supernatural task of electrocuting Lyme bacteria while leaving healthy cells intact, can be purchased on the Internet for between $400 and $2,500.
Although Lyme Literate doctors offer a wide range of therapies, no treatment receives more attention than long-term, high-dose intravenous antibiotics.
According to Lyme Literate doctors, Lyme bacteria hide. They hide in cells and in biofilms. They hide in the heart, brain, joints, and muscles. Indeed, they’re apparently so well hidden that even the immune system can’t find them and make antibodies. (The concept of Lyme disease without Lyme antibodies allows alternative healers to treat patients who never had the disease or who live in states where the disease doesn’t exist.) Because Lyme bacteria are supposedly hidden, two to four weeks of antibiotics aren’t enough; if patients really want to rid themselves of fatigue, pain, and memory loss, they need to be treated for months or even years. Then and only then will this terrible infection be gone.
Lyme Literate doctors’ protests aside, a mountain of evidence fails to support their bacteria-are-hiding-in-the-body-but-you-just-can’t-find-them claim:
First, Lyme bacteria are easily detected in the laboratory. When Lyme disease begins, bacteria are found in the expanding bull’s-eye rash. After a couple of weeks of antibiotics, Lyme bacteria no longer grow from the rash (or anywhere else). Plus, unlike bacteria like chlamydia, mycoplasma, and rickettsia, Lyme bacteria don’t grow inside cells. They grow outside cells, so they’re easy to detect and kill. And unlike some other bacteria, Lyme bacteria haven’t developed resistance to antibiotics. As a consequence, they are easily killed in laboratory flasks, in laboratory animals, and in people. The claim by Lyme Literate doctors that bacteria are hiding out of the sight of researchers (despite appropriate antibiotics) is akin to the claim by Bigfoot Literate people that only they know the monster exists.
Second, the notion that Lyme patients suffer long-term symptoms to a greater extent than the general population is also incorrect. Several studies have shown that Lyme sufferers don’t develop chronic pain or fatigue more frequently than people who never had the disease. Sadly, one study showed that 50 percent of those diagnosed by alternative healers with Chronic Lyme had treatable disorders like depression, rheumatoid arthritis, bursitis, and myasthenia gravis (an autoimmune disease that affects the muscles).
Finally, the best way to determine whether Lyme Literate doctors are right is to take patients who they claim are suffering from Chronic Lyme and divide them into two groups. One group would be given long-term antibiotics, the other a placebo. This study has been done four times, each time with the same result. Patients treated with antibiotics for supposed Chronic Lyme fare no better than those given a placebo. Predictably, about a third of placebo recipients claimed that their symptoms had resolved.
In 2007, in response to overwhelming evidence that refuted the existence of Chronic Lyme—and clear evidence of harm caused by its treatment—a group of Lyme experts issued a definitive statement in the New England Journal of Medicine. “Chronic Lyme disease is a misnomer,” they wrote, “and the use of prolonged, dangerous, and expensive antibiotic treatment for it is not warranted.” In other words, long-term antibiotics for a disease that doesn’t exist are unnecessary and dangerous.
To say the least:
In May 1999, a thirty-year-old woman entered the Mayo Clinic in Rochester, Minnesota, with jaundice and confusion. Despite aggressive attempts at resuscitation, she died soon after. Her diagnosis: a fatal blood clot that had lodged in her heart, a consequence of an indwelling intravenous catheter. Lyme Literate doctors had tested her urine, blood, and spinal fluid for the presence of Lyme bacteria and Lyme antibodies. Every test had been negative. They treated her anyway. At the time of her death, she had received intravenous antibiotics for more than two years.
In 1993, the CDC, in conjunction with the New Jersey Department of Health, investigated an unusual outbreak in Monmouth and Ocean counties. Twenty-five people, mostly young girls, had had their gallbladders removed. All had been treated for months to years with intravenous ceftriaxone, an antibiotic known to cause gallstones. Although Lyme Literate doctors had diagnosed Chronic Lyme, most of these children didn’t have any evidence of Lyme infection. Patients given long-term antibiotics for Chronic Lyme have also suffered antibiotic-resistant bacterial infections, severe allergic reactions, and bone marrow suppression.
Antibiotics aren’t the only problem. In 1990, the New Jersey Department of Health investigated two cases of malaria in U.S. citizens; both were quite ill, both were infected with the same strain (Plasmodium vivax), and both had traveled to a clinic in Mexico to get infected, intentionally. (Lyme Literate doctors call this “fever therapy.”) With proper anti-malaria therapy, both survived. In 2006, one person died and another was hospitalized after Lyme Literate doctors had recommended bismuth, a heavy metal. Lyme Literate doctors have been suspended, fined, reprimanded, or jailed for tax evasion, wire fraud, mail fraud, money laundering, insurance fraud, improperly prescribing antibiotics, using veterinary drugs in people, diagnosing children without examining them, and injecting patients with hydrogen peroxide and dinitrophenol, a toxic substance banned for medical use in the United States for fifty years.
Because so much harm had occurred in the name of Chronic Lyme, the Infectious Diseases Society of America (IDSA) decided to call out the cottage industry that had conjured up its existence and its treatments. In 2006, it issued guidelines to practitioners: “Because of a lack of biological plausibility, lack of efficacy, absence of supporting data, and the potential for harm to the patient, the following are not recommended for treatment of patients with [so-called Chronic] Lyme disease: hyperbaric oxygen, ozone, fever therapy, intravenous immunoglobulin, cholestyramine, intravenous hydrogen peroxide, specific nutritional substances, vitamins, magnesium, and bismuth injections.” It was one of the few times that a professional medical society had taken on practitioners of alternative medicine.
It almost proved their undoing.
When the IDSA published guidelines asking clinicians to avoid alternative medicines for a nonexistent disease, it threatened an industry. Lyme Literate doctors were making millions off the deception; they weren’t about to take the IDSA’s directives lying down. Indeed, a few years earlier, the International Lyme and Associated Diseases Society (ILADS)—an organization composed of Lyme Literate doctors and their patients—had published its own guidelines advising exactly the opposite of what the IDSA had proposed. Three Chronic Lyme activist groups—the New Jersey–based Lyme Disease Association, the California Lyme Disease Association, and the Connecticut-based Time for Lyme—lobbied state attorneys general hoping to find one to take up their cause. They found their champion in the state where Lyme had been born.
Richard Blumenthal was raised in Brooklyn, New York. After graduating from Harvard, he attended Yale Law School, where he was editor-in-chief of the Yale Law Journal and a classmate of Bill and Hillary Clinton. In 1990, he was elected Connecticut’s attorney general, and he was reelected in 1994, 1998, 2002, and 2006. In Blumenthal, Lyme Literate doctors knew they had a friend. He had served on the advisory board of Time for Lyme, received awards from Chronic Lyme activist groups, drafted a state law assuring residents of long-term antibiotic therapy, criticized the state health department for underreporting Lyme disease, and supported a pediatrician, Dr. Charles Ray Jones, accused of prescribing antibiotics over the phone for two children in Nevada—a desert state with few ticks—without ever examining them. (Jones had pulled up to his hearing in a stretch limo, to the cheers of his many fans.)
In November 2006, one month after publication of its guidelines, Richard Blumenthal sued the IDSA for violating antitrust laws, claiming that it was an unauthorized m
onopoly. Angry that both the IDSA and the American Academy of Neurology (AAN) had, in his opinion, brainwashed clinicians, he argued that guidelines “improperly ignored or minimized consideration of alternative medical opinion and evidence regarding Chronic Lyme disease.” Blumenthal claimed that the IDSA and AAN had “not only reached the same conclusions regarding the non-existence of Chronic Lyme disease, [but] their reasoning at times used strikingly similar language.” To Richard Blumenthal, the IDSA and AAN were part of a larger conspiracy, and he wasn’t about to let them get away with it. Attorneys for the AAN argued the obvious: the IDSA and AAN had reached the same conclusions because they had relied on the same evidence.
Unfortunately for Blumenthal, ten years earlier, both the Federal Trade Commission and the Department of Justice had ruled that treatment guidelines issued by medical societies didn’t limit competition and, therefore, weren’t subject to antitrust litigation. Blumenthal was a lawyer. He knew that if the law was on your side, you argued the law (the law wasn’t on his side); if the facts were on your side, you argued the facts (IDSA guidelines was based on more than four hundred scientific studies); and if neither was on your side, you attacked the witness. So Blumenthal attacked the witness, claiming that five of the fourteen scientists who had drafted the IDSA guidelines hadn’t disclosed financial relationships with drug and diagnostic companies. Given that the IDSA had recommended against unnecessary tests and treatments, Blumenthal’s logic was hard to fathom. If followed, the IDSA guidelines would generate less revenue for drug and diagnostic companies, not more.
Indeed, if anything, the conflicts were on the other side. When ILADS issued guidelines friendly to Lyme Literate doctors, it failed to disclose that one committee member was the president of a company that sold an alternative Lyme diagnostic test. Furthermore, several state medical boards had disciplined Lyme Literate doctors for receiving payments directly from intravenous infusion companies. And, unlike the physicians and scientists who constituted the IDSA committee, Lyme Literate doctors had made a fortune treating Chronic Lyme. One doctor, who practiced in a state that didn’t have many patients with actual Lyme disease, collected $6 million from one insurance company in one year. Another doctor is said to have treated two thousand Lyme patients—impressive, given that between 1998 and 2007, fewer than a thousand Lyme cases were reported in the state in which he practiced.
Killing Us Softly Page 12
