The Burden of Lyme Disease

Imagine your body inexplicably failing. Your health declines for weeks, first slowly and then seemingly all at once. Your body fails in crippling ways that make everyday actions such as standing, dressing, walking, breathing and even eating so difficult that it feels easier to give in to the pain and frustration than continue to rage.

When you feel your very worst but look perfectly healthy, you’re told your labs test negative for everything. In other words, you’re deemed well. Your doctors mention psychosomatic symptoms, emotional problems and psychotropic medication, not to mention individual and family counseling. If healthcare professionals notice a physical problem, it’s likely to be misdiagnosed. Lupus, Crohn’s disease, multiple sclerosis (MS), amyotrophic lateral sclerosis (ALS), rheumatoid arthritis, syphilis, chronic fatigue syndrome, fibromyalgia and other names are hurled at you as inconclusive possibilities, but you know none of them quite fit.

Lyme disease is the most common vector-borne disease in North America, with an estimated 300,000 infections occurring each year. Those numbers have grown exponentially in the past 20 years, and they continue to rise.¹ That means healthcare workers must learn more about this surprisingly controversial and politicized illness caused by the bacterium Borrelia burgdorferi. There is no one-size-fits-all approach to Lyme disease’s multiple manifestations; it can present many ways beyond the classic “bulls-eye rash,” which appears in only 30 percent of patients. As a result, even in highly endemic areas, Lyme goes undiagnosed, though its consequences are painfully visible.

“It just doesn’t seem possible,” field entomologist David Simser, PhD, says of the black-legged tick nymph, “that this poppy-seed-sized thing is going to make you bedridden, possibly for the rest of your life.”²

What Lyme Sufferers Wish Professionals Knew

From a patient’s point of view, Lyme disease is personal. Unlike clinicians who view Lyme disease as a diagnosis, patients often view it as the enemy that took their lives away. Dorothy Leland, board president of Lymedisease.org, says, “Early symptoms of Lyme — such as fever, fatigue and achiness — are common to many other conditions. Plus, the bull’s-eye rash most associated with Lyme disease doesn’t show up in everyone who is infected.” She adds that “diagnostic testing for Lyme disease is problematic. The standard test for Lyme is undependable — it often says you don’t have Lyme when you actually do.” According to Leland, patients still have difficulty being appropriately diagnosed and treated, even in highly endemic areas.

“A negative Lyme test does not mean you don’t have Lyme,” Leland adds. “Lyme can cause wildly divergent symptoms — affecting your heart, digestive tract, joints, muscles and/or brain — to name a few. Lyme-related pain can migrate around the body, and symptoms can wax and wane. Hence, patients can have good days and bad days in terms of fatigue, pain and other symptoms. Lyme disease symptoms can persist for months or years, even after treatment.”

Writer and author Suzanne Hadley Gosselin experienced firsthand the frustration of long-Lyme conventional treatments that availed no healing. She contracted the disease in 1999 but was misdiagnosed in 2000. Her experience falls outside of traditional medicine and even more progressive International Lyme and Associated Disease (ILADS) guidelines. “A rheumatologist diagnosed me with a connective tissue disorder that fell somewhere in the crack between rheumatoid arthritis and lupus and put me on prednisone for the pain,” she said. “I was also prescribed Celebrex to address my symptoms.”

Unsatisfied with the connective tissue diagnosis, her mother dug deeper and discovered that Lyme disease often mimics other conditions. “The rheumatologist was unwilling to entertain the possibility of Lyme,” Gosselin adds. “We sought out a [doctor of osteopathic medicine] who administered the Western blot test. I tested positive but the battery of tests were inconclusive. Still, the doctor diagnosed Lyme disease and administered a six-week course of amoxicillin.”

After finding no relief from standard protocols, Gosselin worked with an outpatient naturopathic clinic that specialized in treating long-Lyme disease. “My six weeks at the clinic, where I received homeopathic therapies and sessions in a hyperbaric chamber, decreased my symptoms and allowed me to wean off prednisone nearly a year after I had first taken it. Still, my main symptoms continued to be debilitating joint pain and fatigue. I could not climb stairs and struggled to lift a hairdryer to dry my own hair. In 2001, I worked with a chiropractor and naturopath who treated me with various therapies that were focused on eliminating the Lyme spirochetes from my body. My symptoms slowly began to fade, and by early 2002, they were all but gone. After 2002, my symptoms never reoccurred.”

Unlike Gosselin, who was unable to take a long courses of antibiotics because of a severe Herxheimer reaction, many others experience dramatically positive results with them. Gosselin herself demonstrates that effective treatments do not lie exclusively within the Centers for Disease Control and Prevention’s (CDC) narrow protocol. Unfortunately, proper treatment of any sort often occurs only after years-long battles with debilitating symptoms that are often written off. For example, Nikki Kent is a chronically ill young Canadian woman who underwent more than 17 inconclusive tests in the two years prior to being diagnosed with Lyme disease in the United States. According to her mother, “You’ve got to just believe the patient, and believe they are sick. There’s something wrong with them, and they need to get help.”⁴

A Lymedisease.org survey of more than 3,000 patients with chronic Lyme disease found that patients suffer a worse quality of life than those with most other chronic illnesses, including congestive heart failure, diabetes, MS and arthritis. More than 70 percent of patients with chronic Lyme disease reported fair or poor health versus 62 percent for congestive heart failure. Similar results have been found in other studies.⁵

Conflicting Definitions and Treatments

“Typical” Lyme disease is considered to respond to treatment within a four- to six-week course of doxycycline or amoxicillin, the standard antibiotics prescribed by mainline physicians. However, chronic Lyme disease, the “disease du jour” as skeptics call it, is very often dismissed as a myth or misdiagnosed. According to standard protocol, any symptoms lasting longer than four to six weeks after treatment have been said to be caused by the “aches and pains of daily living.”² Chronic Lyme disease, or long-Lyme, as many sufferers will attest, is too often scoffed at by skeptical professionals who say it does not exist. More progressive groups consider long-term antibiotics, and often multiple antibiotics simultaneously, to be the most effective way to eradicate the illness in patients who continue to manifest a variety of symptoms.

The argument against long-Lyme is perhaps based on the fact that this is a complex disease, and ticks can transmit multiple diseases with one bite. Board certified internist Richard Horowitz, MD, a Lyme expert in Hyde Park, N.Y., says, “It’s possible that years ago patients were only getting pure Lyme disease, and this might explain why there’s such a disparity [of protocol] in the literature. But we’re now seeing that ticks contain multiple organisms.” These organisms, he further explains, contribute to overwhelming the immune system with pathogens, which he says cause patients to be much, much sicker because they do not have simply Lyme. He purports that multiple other illnesses cause symptoms to linger instead, causing mainstream medicine to consider chronic Lyme a myth.²

Of course, countless Lyme patients and growing numbers of doctors disagree.

Maureen McShane, MD, another Lyme expert who practices in upstate New York, has treated Lyme patients for well over 20 years and opposes mainline treatments for longer-term symptoms. “I almost fainted the first time I gave our prescriptions for two antibiotics at the same time because I was so apprehensive about losing my license,” she says. “But [patients] responded, and it was almost like a miracle. I had never, ever practiced medicine where I would see responses within a month, two months, three months. Their lives were changed. This was a huge impact, and some of these people had been ill for years and years.

“I believe that evidenced-based medicine is the problem,” which is why, she says, there is such a division regarding Lyme treatment. “The medical journals that we doctors are raised on — [that] we go through medical school believing — [cause physicians to believe] that if it’s not evidence-based medicine, forget about it,” Dr. McShane explains. “They will not publish an article on adequate treatment of chronic Lyme disease. So your regular doctors in Canada [and the United States] have no idea what to do.”⁴

Groups such as Lymedisease.org support Dr. McShane’s argument. With regard to CDC and the Infectious Diseases Association of America’s (IDSA) guidelines for a brief course of antibiotics, ILADS has published a rigorous assessment of the evidence. It found mainline treatment failure rates ranging from 16 percent to 39 percent for early treatment. Estimates for patients with chronic Lyme disease are much higher, ranging from 26 percent to 50 percent.⁵

“We feel that CDC guidance regarding Lyme disease is seriously flawed,” Leland said. “We believe that, unfortunately, the voice of Lyme disease patients has been ignored for too long. LymeDisease.org seeks to rectify this in a variety of ways. For instance, we amplify the lived experience of patients through our MyLymeData research project. This is a patient-driven registry and research platform that permits patients to quickly and privately pool their personal experiences. Participants answer questions about the progress of their symptoms, response to treatment and what works and doesn’t work for them. Having data from thousands of patients permits researchers to evaluate care as it is provided in real-world practice. It can also generate research hypotheses and help recruit patients for clinical trials. There are currently more than 16,000 patients enrolled in MyLymeData, and our team works with researchers at many prominent institutions.” (For more information on MyLymeData, see mylymedata.org.)⁵

CDC treatment guidelines, in conjunction with IDSA, state that Lyme can be treated with roughly four to six weeks of doxycycline or amoxicillin, and that any residual symptoms after treatment are unrelated to Lyme.3 Despite showing impressive results in many long-Lyme patients, long-term antibiotics and use of multiple antibiotics simultaneously are considered unconventional, and therefore unacceptable, by many healthcare providers.4 Still, CDC estimates that at least between 10 to 20 percent of patients treated conventionally remain ill. A recent study of early Lyme disease patients reported 36 percent remain ill.⁵

The Bacteria and Its Impact

“The spirochete that causes Lyme is b. Burgdorferi and related borrelia,” pathologist and renowned Lyme researcher Alan MacDonald, MD, states. “The model I have used to try to understand all of the possible things Lyme disease can do is the syphilis model.” He explains that if a syphilis spirochete, t. pallidum, which shares many traits with b. Burgdorferi, can cause multiple manifestations in multiple systems, then the borrelia spirochete, over time, might cause illnesses such as Alzheimer’s disease, ALS, MS and Parkinson’s disease — all named neurological conditions for which no cause is yet known. Dietrich Klinghardt, MD, PhD, founder of the American Academy of Neural Therapy, medical director of the Institute of Neurobiology and lead clinician at the Sophia Health Institute in Woodinville, Wash., supports Dr. MacDonald’s theory, saying, “[At my clinic], we never had a single MS patient, a single ALS patient, a single Parkinson’s patient who did not test positive borrelia Burgdorferi. Not a single one.”² In other words, b. Burgdorferi is likely at the root of many illnesses, including long-Lyme.

Christine Green, MD, a Lyme-treating physician who serves on the LymeDisease.org board of directors, points out how b. Burgdorferi can form a biofilm, which often prevents brief, traditional courses of antibiotics from being effective because the film protects the bacteria. Dr. Green explains that in addition to forming biofilm, Borrelia include efflux pumps, allowing the microorganisms to regulate their internal environment by removing toxic substances, including antimicrobial agents, metabolites and quorum sensing signal molecules. These efflux pumps push out heavy metals and other chemicals, but they also expel brief courses of antibiotics before they’ve had a chance to work.^6,7

Final Thoughts

Perhaps CDC itself unintentionally supports the argument against standard protocol when it states: “Additional research is needed to better understand how to treat, manage and support people with persistent symptoms associated with Lyme disease. In light of these research gaps, recommendations for treatment of persistent symptoms in people previously treated for Lyme disease are not provided here.”³

This begs the question that if additional Lyme protocol research is needed, why aren’t unconventional treatments with outstanding results not researched or even considered? Many professionals have many political, sometimes finance-related viewpoints about the answer to this question. Suffice it to say, however, that Lyme disease will not soon be eradicated, and healthcare providers need to educate themselves regarding both standard and more progressive treatment protocols. There needs to be no stone left unturned when it comes to the treatment of acute and chronic Lyme disease. Providers’ diligence could very well spare patients years of suffering.