"There is a reason so many Lyme sufferers seek out alternative treatments. It is not because they are insane, uneducated, overly hysterical, stupid, or gullible. It is because they are ill, they know they are ill, and because conventional medical treatment has not worked for them."

-- Stephen Harrod Bruhner, Healing Lyme: Natural Healing and Prevention of Lyme Borreliosis and Its Coinfections

The annual number of new cases of Lyme borreliosis disease occurring in the United States is unknown due to many factors, namely under-diagnoses, misdiagnoses and unreliable tests. The National Institute of Health classifies Lyme as a rare disease, yet at the same time the National Institute of Allergies and Infectious Diseases estimates that there are 100,000 cases of annual occurrence. Harvard researchers and Lyme-literate physicians believe that up to 200,000 new cases of Lyme occurring in the U.S. each year, and that the number of people infected grows each year.

Guidelines published in October, 2006 by the Infectious Disease Society of America (IDSA) list many of the current treatments for Lyme disease as "not recommended," declaring that Lyme can be cured with a 14 - 28 day course of antibiotics.

People diagnosed with Lyme believe the disease is neither rare nor easy to cure. Physicians who are well-versed in treating their patients with Lyme often use high dosages of long-term antibiotics. Patricia Smith is president of the Lyme Disease Association (LDA), and vice president of political action for the International Lyme and Associated Disease Society. Smith reported that immediately after the guidelines were published Lyme patients started contacting the LDA anxious that their insurance companies would now refuse to pay for long-term antibiotics, a common method of treatment for chronic Lyme. Although the IDSA maintains that the guidelines are not enforced, the reality is that insurance companies can rationalize their refusal to fulfill physician's prescriptions by pointing to the Center for Disease Control (CDC), which published the guidelines on their web site.

"Lyme disease is an epidemic in this country," says cardiologist and medical researcher Lee Cowden, MD. Lyme's ability to mimic hundreds of other diseases adds to the confusion. Cowden believes that most of the diseases "considered incurable by conventional medicine have some kind of Lyme component." The disease is spread through black-legged ticks, but Lyme-literate doctors suspect that the disease is spread through sexual intercourse and other means.

"It's in mosquitoes too," says physician and researcher JoAnn Whitaker, MD, of the Bowen Research Laboratory in Florida. The lab is responsible for a recently patented test for Lyme that is reportedly more reliable than the Western Blot, the test typically used to detect Lyme antibodies. The Bowen test, called the Q-RiBb, tests for the antigens themselves. The test is still undergoing validation by the National Institutes of Health. Dr. Whitaker believes that fleas, mosquitoes and any blood-sucking organism can carry Lyme bacteria unless it has a body temperature high enough to kill the bacteria. "I think this is the most prevalent disease there is," she says.

Although many Lyme patients have had success with long-term antibiotics, many patients being treated with antibiotics have recovered 100% for months or even years only to suffer a relapse. Lyme patients are a varied group, one Lyme-literate physician reminded attendees at the 2006 Lyme conference in Philadelphia. He advised them not to take "a one-size fits all approach" with treatment.

As Patricia Smith and others have noted, due to the controversy and confusion around the disease, Lyme patients recognize the importance of conducting their own research into the symptoms and stages of this multi-stage disease. Anyone who begins to dip their toe in the research quickly becomes aware of the politics around the diagnosis and treatment of Lyme. People diagnosed with Lyme are often at odds with the medical community, many of whom perceive the patient as the enemy, not as a person with a disease.

Many people explore alternatives such as nutritional supplements to help restore their energy and cope with side effects of the antibiotics. Patients are often prescribed antibiotics and never told about the side effects, or about the simple ways to avoid them. Some patients delve into alternatives as they lose confidence in conventional treatment. Some patients simply can't afford to seek out a Lyme-literate doctor and enlist their help. To patients who are under-insured or not insured at all, the alternatives are a pro-active path they must explore because they are sick. They want to get better, and their symptoms motivate them to find ways to heal. As anybody who has ever googled a cure for the common cold can tell you, there is no shortage of information about healing alternatives online.

Many of these alternatives to antibiotics are compelling, and when conducting research it is clear that members of the virtual Lyme community are genuine, highly motivated and sophisticated in their knowledge of the disease, its effects and the array of alternative therapies available. Alternatives include vitamin C and salt, Rife machine therapy, infrared sauna and antimicrobial herbs. Patients frequently try more than one method, learning what works best for them, monitoring and chronicling their symptoms as they respond to the various therapies.

Patients learn that while following a protocol for healing Lyme, it is critical to address detoxification of heavy metals in the body such as mercury from amalgam dental fillings, exposure to lead poisoning and the use of aluminum pots and pans. Adopting a sound nutritional diet without sugar, alcohol and caffeine is also important. All of those substances cause havoc to a compromised immune system. Sugar feeds Lyme bacteria and caffeine causes inflammation. Alcohol contains sugar, depresses the immune system, and inflames the liver.

Lee Cowden not only suspects Lyme bacteria as a root cause for autoimmune diseases, he also lists neuro-degenerative diseases, cardiovascular diseases, cardiac-arrhythmias, gastrointestinal diseases, MS, ALS, Parkinson's, ADDHD, and autism. "I've found that if you can start working on the Lyme and the toxins, then a lot of these labels go away," he says.

How is Lyme disease contracted and spread? The question only seems to invite more controversy to a growing population of Lyme sufferers seeking answers. However, one thing is becoming clear. "Only a very small percentage of those have contracted Lyme disease through a tick bite, the way conventional medicine thinks," warns Dr. Cowden.

Stephen Harrod Buhner concurs. Author of Healing Lyme: Natural Healing and Prevention of Lyme Borreliosis and Its Coinfections, Buhner says although transmission through a tick bite is still believed to be the most common way of contracting the disease, he notes, "little research has been conducted on other routes of transmission." Lyme spirochetes "are passed not only through tick bites but also through other mechanisms. Once they infect people they can be found in breast milk, in tears, in semen, and in urine. Babies have been infected in the womb," he writes.

Buhner, a master herbalist, conducted intensive research of Lyme borreliosis in preparation for his 2005 book, In the course of his research, he says, he expected to find that nonpharmaceutical alternatives were not included in any mainstream medical discussion about treatment. But he was surprised by something else he discovered, which is, "that a significant amount of reputable research is being ignored by the mainstream medical community." If Lyme spirochetes are known to be passed through sexual intercourse, for example, one must wonder why the CDC is turning a deaf ear to that research.

While battle lines are drawn in the medical community about diagnosis, treatment and prevention, Lyme patients continue to grow more sophisticated in their understanding of the effects of Lyme disease, and they continue to try to help themselves heal from Lyme, through conventional therapy, alternatives and a combination of both.

LDRD is a growing resource of information about the prevention, treatment and diagnosis of Lyme disease. Listen directly to Lyme-literate experts.

Suzanne Arthur/LDRD/All rights reserved/24 November 2006