After three weeks of suffering with fever, chills, headaches and muscle aches in 1996, Daniel Kinderlehrer began to suspect he had Lyme disease, the most common vector-borne disease in the United States. As a medical doctor, he knew that his symptoms and his Massachusetts location pointed in that direction. So after a lab test confirmed his suspicions, he began standard antibiotic treatment. But the drugs failed to help—in fact, after six weeks, he felt even worse.
Concerned, he contacted the head of the Lyme Disease Clinic at the New England Medical Center. When Kinderlehrer described his case to his fellow physician, “he told me I never had Lyme to begin with,” Kinderlehrer remembers. “He told me the test results were wrong. Basically, because the treatment didn’t work, I couldn’t have the illness.”
Kinderlehrer would soon learn that this tunnel-vision approach to Lyme disease was pervasive. He began doing his own research and found many controversies surrounding Lyme—controversies that only have intensified over time. Basically, two camps exist, he says. One believes chronic Lyme disease is hard to get and easy to treat, and the other, which he belongs to, believes it’s easy to get and hard to treat. Over the next few years, Kinderlehrer’s symptoms improved, but severe emotional distress in 2000 brought their return, and he became subject to panic attacks. He even became suicidal, which forced him to close his practice for a time.
Now, nearly 10 years later, Kinderlehrer continues to deal with Lyme disease—both his own and others’. He makes his home in New Mexico, not Massachusetts, and his part-time medical practice there is solely devoted to treating patients with the disease. And for good reason: there are an ever-increasing number of them. More than 23,700 cases of Lyme were reported to the Centers for Disease Control and Prevention (CDC) in 2004, with estimates of up to a million total new cases, if those that go unreported are counted.
Lyme disease was first named in 1977, after a mysterious breakout of what was thought to be juvenile arthritis in Lyme, Conn. In the early 1980s, researchers identified the cause: Borrelia burgdorferi, a spiral-shaped bacterium (called a spirochete) carried in the guts of tiny ticks who feast on the blood of deer, dogs, other animals and humans. The conventional diagnosis and treatment for the disease goes something like this: A patient gets bitten by a tick, develops a bull’s-eye rash (technically called erythema migrans), is diagnosed with Lyme after a positive blood test and is cured with a week or two’s worth of antibiotics.
But Lyme activists disagree with every aspect of the conventional diagnosis and treatment scenario. According to the International Lyme and Associated Diseases Society (ILADS), less than half of all Lyme patients remember a tick bite or develop the classic bulls-eye rash. In addition, the available tests are unreliable; ILADS data show that the standard screening test for Lyme misses at least 35 percent of all cases. (“Can you imagine anyone recommending a pregnancy test with that rate?” Kinderlehrer asks.) And a week or two of antibiotics is not enough. ILADS says any course shorter than six weeks results in a 40 percent relapse rate.
While medical experts may disagree on duration and dose, most do agree that early antibiotic treatment can eradicate the disease. But unfortunately, people often suffer with Lyme for years before discovering they have it. (Many Lyme-literate doctors believe hidden Lyme is responsible for many diagnoses of fibromyalgia, chronic fatigue syndrome and even rheumatoid arthritis.) Herein lies the rub, because the longer you have Lyme, the more entrenched your symptoms become—and the harder the disease is to treat with antibiotics. That’s why many people have turned to alternative therapies to address their Lyme symptoms. Literally dozens of options exist. If you know (or suspect) that you have Lyme, you’ll need to do your homework to learn more about the disease and find the right doctor and/or therapies for you. (See “How to find a Lyme-literate Doctor” below.) To get you started, here’s a review of the leading alternative treatments being used by Lyme-literate practitioners today.
The homeopathic approach to treating Lyme pays particular attention to the details of patients’ symptoms: the time of day when fatigue sets in, for example, or whether their joint aches feel better when they apply heat or when they apply cold. Medications are then prescribed, based on ‘the law of similars’: the ill person is given an extremely diluted amount of a substance that would elicit the same symptoms in a healthy person.
There are also preventative homeopathic medicines called nosodes, which are made with a tiny amount of specific disease-causing bacteria in a diluted solution. In theory, they work somewhat like modern vaccines: The immune system recognizes the bacterium as an invader and creates antibodies to fight it. In classic homeopathy, nosodes are considered a form of first aid; ideally, a Lyme nosode would be administered almost immediately after a tick bite.
While any health practitioner can prescribe nosodes, general practitioners often are not trained to provide the full benefit of the homeopathic approach. And finding a qualified homeopath can be challenging, according to Ronald Whitmont, an MD and homeopath in New York. He recommends looking for a ‘classical homeopath’ with some formal medical training. For listings of homeopaths in your area, contact the National Center for Homeopathy at (877) 624-0613 or www.homeopathic.org; the American Institute of Homeopathy at (888) 445-9988 orwww.homeopathyusa.org; or Classical Homeopathic Physicians in the USA at www.homeopathic-md-do.com.
Experts say that nutrient deficiencies may contribute to some stubborn Lyme symptoms. For example, Lyme patients often have low levels of vitamin B12, a nutrient critical for proper nervous system function. Magnesium deficiency is also common, which can lead to irregular heartbeat, fatigue, muscle aches, depression and headaches, all common Lyme symptoms.
On your own, you can try essential fatty acid supplements and coenzyme Q10 to strengthen your immune system and reduce fatigue, aches and cognitive symptoms. Choose a combination of omega-6, found in plant oils like borage (Borago officinalis), evening primrose (Ribes nigrum) and black currant seed (Cenothera biennis), and omega-3, found in cold-water, fatty fish and vegetable oils; and select an omega-3 supplement that contains 1,000 mg of eicosapentaenoic acid (EPA). Treatment guidelines developed by Joseph Burrascano Jr., MD, a director of ILADS, recommends four capsules per day of each fatty acid for four to six months. For coenzyme Q10, try 200 to 300 mg daily in two or three equal doses.
Tip: If antibiotics are part of your Lyme treatment plan, remember to include a probiotic in your regimen to promote the growth of healthy bacteria in the gut.AcupunctureSteven Bock, MD, and a director of ILADS, routinely recommends acupuncture to his Lyme patients. Bock particularly recommends electroacupuncture (EA) for stubborn Lyme symptoms. EA, a variation on classic acupuncture, delivers a low electric current through the acupuncture needles via an attached device. Research has suggested that adding electrical current may enhance acupuncture’s known effects on the release of the feel-good brain chemicals endorphin and serotonin. Additionally, not only can EA help with diagnosis, according to Bock, a form of it (EAV) can pick up and display on a machine underlying nutrient deficiencies or excesses and detect toxicities that may interfere with healing. To find a practitioner experienced in electroacupuncture in your area, contact the American Academy of Medical Acupuncture at (323) 937-5514 or www.medicalacupuncture.org.
Many Lyme patients credit various forms of electromagnetic therapy for their recovery. This controversial therapy uses a machine to generate various frequencies of electromagnetic energy. In theory, the frequencies destroy pathogens in the body while preserving healthy tissues. Proponents explain it as similar to an opera singer shattering crystal with a high note: the frequency of the sound shatters the glass without affecting other objects in the room.
Electromagnetic therapy is based on the work of Royal Raymond Rife, a scientist who studied electromagnetic energy in the 1930s. For this reason, many of the machines available today are referred to as “Rife” machines. Other names for similar devices include Rife-Bare and the electromagnetic environment monitor (EMEM).
Electromagnetic devices do not have approval by the Food and Drug Administration, but their use is common among Lyme patients searching for alternatives. Kinderlehrer says both he and his daughter benefited from using a Rife-type device. Marian Head, author of Revolutionary Agreements: Twelve Ways to Transform Stress and Struggle Into Freedom and Joy (Marlin Press, 2005) and organizational development specialist in Boulder, Colo., credits an EMEM device with her son Michael’s recovery from Lyme in 2002. “When we started using that, we began seeing changes immediately,” Head says. Rife-users often report a Herxheimer reaction after a session with the machine. This recognized medical phenomenon, caused by the rapid die-off of bacteria, can make symptoms worse for a day or two after treatment.
A wide variety of information about electromagnetic therapy devices exists on the Internet; sites range from blueprints for a build-it-yourself machine to assembled devices that cost several thousand dollars. For more information, contact Resonant Light Technologies at www.resonantlight.com; Royal Rife Technologies atwww.rt66.com/~rifetech; or Earth Pulse Technologies at www.earthpulsetechnologies.com.
People often turn to alternative medicine when conventional methods have failed. That seems to be the case with Lyme disease, as the mainstream approach to prevention, diagnosis and treatment hasn’t changed much in a quarter of a century, despite little success. Fortunately, alternative methods seem to be helping many people in their struggle with Lyme. “I have had many patients get dramatically better when they’re given things to balance the immune system, their hormones, and help them sleep better,” says Kinderlehrer. “By supporting the natural systems in the body, we allow them to heal themselves.”
How to Find a Lyme-literate Doctor
Despite its growing presence over the last 25 years, most doctors are still unfamiliar with diagnosing and treating Lyme. If you know (or suspect) that you have Lyme, you’ll want to find a medical professional well acquainted with all aspects of the Lyme controversy. The nonprofit International Lyme and Associated Diseases Society (ILADS) is a good place to start. Contact ILADs at (301) 263-1080, or www.ilads.org.
What About Prevention?
Here are some suggestions from the Centers for Disease Control and Prevention (www.cdc.gov/ncidod/dvbid/lyme) to reduce your risk of contacting Lyme:
- Avoid tick habitats, such as moist shady areas with leaf litter, overgrown grass, bushes and other low-lying vegetation.
- When you’re in a tick-infested area, wear a hat or scarf, long sleeves and long pants tucked into your socks.
- After each excursion, check for ticks. Lyme-carrying ticks can be as tiny as a poppy seed, so use a magnifying glass.
- If you find a tick, remove it with fine-tipped tweezers. Do not use petroleum jelly, a hot match, nail polish or other products. Don’t twist the tick or squeeze too hard. If the mouthparts remain in the skin, don’t worry: The Lyme disease pathogens are in the tick’s mid-gut or salivary glands in the lower head.
- After removing the tick, watch for symptoms such as fever, fatigue, headache, muscle and joint pain and a bull’s-eye rash. Symptoms usually manifest after three to 30 days. You should see your doctor immediately if you develop any signs.