Arriving for the first time at a gorgeous Australian beach, I was stunned to find nobody in the water and signs explaining that a certain local jellyfish can turn a refreshing swim into a fatal one. Years later, during a trip to South America, the locals warned of a common, biting bug that carries a microscopic pathogen responsible for Chagas disease, an ailment with a years-long incubation that eventually debilitates its victims with extreme fatigue, digestive failure, and heart damage that can be fatal (and may have been one of Charles Darwin’s unintended mementos from his South American travels). Visitors to the Hudson Valley may be surprised to see the warnings of ticks and Lyme disease, even in tiny urban parks; worse off are those who missed the signs and return home to develop a mysterious illness their doctors don’t recognize.
We live in one of the hottest spots for Lyme disease in the nation (Dutchess and Columbia counties were two of the three counties nationwide tallying over 300 cases per 100,000 people for three years running; the other was Dukes County in Massachusetts). Because of that, citizens as well as medical professionals tend to be better informed about tick-borne illnesses, especially Lyme disease, than in many parts of the country. Nearly everybody understands that Lyme disease is a vector-borne illness, meaning that the pathogen that causes it (the spirochete bacteria Borrelia burgdorferi) gets into people through a middleman (rather, middlecritter) that unwittingly shuttles the pathogen around. In our region, the predominant vector that shuttles Borrelia is the deer tick (also called the blacklegged tick, or Ixodes scapularis), though mosquitoes, fleas, and mites are also vectors. Tick eggs are pathogen free, but during the blood meals that fuel its progression from larva to nymph to adult, each tick may acquire the bacteria by feasting on the blood of an animal “reservoir”—one that had previously been bitten by a bacteria-carrying tick and now serves as a bacteria incubator. Borrelia reservoirs include mice, voles, moles, and several kinds of birds. Ticks in our area also may carry pathogens for other illnesses, namely, human granulocytic anaplasmosis (formerly known as human granulocytic ehrlichiosis) and babesiosis.
Ironically, in spite of our tick awareness, many people still don’t get early or sufficient medical care. A number of problems hamper diagnosis and treatment, and fuel controversies over such basics as whether there is such a thing as chronic Lyme. Dr. Steven Bock of the Rhinebeck Health Center and the Center for Progressive Medicine in Albany has been working with Lyme disease for about 25 years now and has seen close to 6,000 cases. He names several key challenges with the illness:
About half of people who come down with Lyme symptoms never find a tick or a bite, or the bull’s-eye rash (erythema migrans, or EM) characteristic of Lyme.
Symptoms of early Lyme disease (headache, fever, fatigue, muscle aches) may be dismissed as other problems, such as flu, joint injury, overwork, or even psychological issues like depression.
Symptoms of long-term infection with the Lyme pathogen may be quite different from the hallmark picture of impaired nervous system function, vision problems, heart dysrhythmia, and/or joint damage.
Lyme-causing bacteria can linger in certain tissues or within cells where the immune system cannot readily detect and destroy them, causing recurrent and varied symptoms, and inconsistent test results.
Patients may have concomitant infections with other bacteria or parasites carried by ticks, each of which requires a different course of treatment.
Diagnosis and treatment decisions are often based on the results of laboratory tests that are not very sensitive, especially in the first few months after a tick bite, and can give false negatives (finding no infection when there is one); people can test negative for years while still having symptoms.
The Great Pretender
Lyme hardly ever looks like the textbook example of a tick bite followed by the EM rash, then neurological symptoms, fatigue, and joint pain, says Bock. “Lyme is like the great pretender, like syphilis used to be. Lyme presents itself in different ways in each individual person. There is a pattern, but that doesn’t mean that every case is the same. It depends on the patient’s history and circumstances. Some of my patients have seen seven or eight specialists trying to diagnose the problem. They may have symptoms that are staggered over time, or one isolated symptom.” He also notes that children’s symptoms can include learning and behavioral problems; often it’s their mothers who recognize that something is just not right.
Bock compares Lyme to the parable of several blind men who each touch a different part of an elephant, and each identify it differently. Medical specialists looking at symptoms may pursue treatments for ailments other than the real beast: Borrelia infection. In a 2004 Townsend Letter to Doctors and Patients titled “New Ideas About the Cause, Spread, and Therapy of Lyme Disease,” Dr. James Howenstine gives evidence for many conditions misdiagnosed in patients who turn out to have Borrelia infection. Those conditions include AML (amyotrophic lateral sclerosis), Parkinson’s disease, MS (multiple sclerosis), Bell’s palsy (facial paralysis), chronic fatigue, heart failure, angina, irregular heart rhythms, fibromyalgia, autoimmune diseases such as scleroderma and lupus, sudden deafness, ADD and hyperactivity, psychiatric illnesses such as schizophrenia, and more.
A problem in diagnosing Lyme arises when doctors narrow their definition of what constitutes symptoms. It should be a clinical diagnosis, Bock explains, based on a doctor’s evaluation of the patient’s history, current health, and personal variation in symptoms. But many doctors use a definition of Lyme that the Centers for Disease Control (CDC) uses for surveillance purposes to help track the geographic distribution of the illness over time. The CDC’s criteria are strict: A patient must have a ring-shaped rash of at least 5 centimeters in diameter, or have at least one late symptom of infection (a musculoskeletal, cardiovascular, or neurologic problem) in combination with laboratory evidence of infection with Borrelia. The CDC definition leaves out the many people who didn’t notice a rash, haven’t progressed to more serious symptoms, or who had a negative Lyme test result. The CDC’s criteria about what constitutes a positive test is having two of three bands visible on the western blot (indicating pathogen bits in the blood), or five of ten bands on the IGG test (showing various antibodies in the blood). “Those levels were established by the CDC for their studies and research,” Bock explains, “but they don’t really apply to clinical diagnosis. A person could still have important bands and have the test called negative.” Without suspecting Lyme in those cases, a doctor will skip the most effective treatment: early antibiotic treatment.
“The biggest problem I get in my practice,” says Bock, “is people being told by good doctors that they don’t have Lyme. What happens is that a patient comes to me with a dysfunction like pain in the joints, or headache, or fatigue, and they may even have had a tick bite, but they had a negative test for Lyme, or they may have only three bands instead of five [on one of the lab tests]. But absence of proof is not proof of absence.”
Failing the Test
The laboratory tests for Lyme disease can unfortunately be a barrier to prompt and appropriate treatment. Bock gives an example of how negative test results can prolong and confound diagnosis. “A patient goes on vacation to Martha’s Vineyard in June, doesn’t notice any tick bite or rash, but in the end of August, she gets flu-like symptoms,” he says. “That’s kind of unusual in the summer, but she gets better and doesn’t think about it any more. A month later, she develops headaches, but they might be a sinus problem, or stress. Later she feels really fatigued, and maybe her knee hurts, so she sees a rheumatologist—who may even think to test for Lyme but have it be negative. Then she may be prescribed anti-inflammatory medication for the joint pain.”
Bock has seen over and over that antibiotics for Lyme can resolve symptoms in many such cases. “If my clinical impression is Lyme, a negative test doesn’t stop me from prescribing a six-week course of antibiotics [two weeks longer than many doctors prescribe]. If a patient tells me they went camping, and they have developed several of the myriad symptoms you can get with Lyme, I’ll do a trial of antibiotic. If symptoms clear, they may well have had Lyme. They have to be free of symptoms for five-to-six weeks before I stop antibiotics, then I follow them for an additional six to twelve months before I consider them home free.” He notes that his attitude toward antibiotics has changed where Lyme is concerned, especially when treating children. “In my practice in integrative medicine, I used to get kids off of antibiotics because they were being given too much. But with Lyme, I see people who aren’t treated enough.” As for the recent trend of giving a single dose of 200 mg doxycycline after a tick bite, he says it might work for some people, but he’s seen many for whom that fails.
Lyme and Lyme again
Author Bryan Rosner, editor of The Top 10 Lyme Disease Treatments (BioMed Publishing) and contributor to the 2008 Lyme Disease Annual Report, is one of many people incensed by a current controversy about whether or not Lyme infection can persist after the standard three- to four-week antibiotic treatment and cause chronic symptoms that become, in some cases, catastrophically debilitating. The Infectious Diseases Society of America (IDSA) is a prominent medical organization that denies the existence of chronic Lyme.
In his Annual Report chapter Rosner laments that, “IDSA guidelines generally determine Centers for Disease Control guidelines, and CDC guidelines generally determine what is and is not accepted practice for licensed physicians. Hence, because the IDSA does not recognize chronic Lyme disease as a real medical condition, neither do the majority of physicians in the United States.” The IDSA believes that any symptoms after antibiotic treatment are a psychosomatic condition best called “post-Lyme disease syndrome.”
In a similar vein, a 2007 article authored by several physicians in the authoritative New England Journal of Medicine asserts that “it is highly unlikely that post–Lyme disease syndrome is a consequence of occult infection of the central nervous system.” The paper acknowledges that some patients continue to have fatigue, difficulties with concentration or memory, and/or musculoskeletal pain after a course of antibiotics. Nonetheless, the authors recommend this to doctors: “The scientific evidence against the concept of chronic Lyme disease should be discussed and the patient should be advised about the risks of unnecessary antibiotic therapy. Explaining that there is no medication, such as an antibiotic, to cure the condition is one of the most difficult aspects of caring for such patients. Nevertheless, failure to do so in clear and empathetic language leaves the patient susceptible to those who would offer unproven and potentially dangerous therapies.” That stance has outraged thousands of patients and those doctors willing to treat for extended Lyme infection, who are battling for insurance coverage and even face persecution and legal challenges for their insistence that chronic infection is real.
At an annual think-tank conference about Lyme this summer, Bock and other doctors gathered to dispel the notion that Lyme must be corseted by the CDC’s and the ISDA’s thinking. “There has been a big barrier,” says Bock, “between those in the ISDA, who feel that Lyme is totally curable with four weeks of antibiotics, and others like me who are in ILADS [the International Lyme and Associated Diseases Society], who feel that Lyme can be complicated in certain people. The bacteria can be sequestered in immunologically privileged tissue, where they aren’t vulnerable to the immune system. And the bacteria only get killed by the antibiotic when they divide, so two months later a patient may feel fatigued and get headaches, and it might be the Lyme bacteria still.”
At a past ILADS conference, evidence for a way that bacteria could survive included electron micrographs of Borrelia entering a white blood cell and emerging with a layer of the cell’s membrane, serving as a protective cloak that the immune system ignores as “self” cells. Reports in medical journals and at other conferences support the ability of Borrelia to linger, such as the laboratory experiments by researchers at Tufts University School of Medicine, in which antibiotics eliminated bacteria attached to the outside of human cells but left viable bacteria inside the cells. In addition, Borrelia bacteria have been shown to survive without a cell wall, making antibiotics that work by blocking cell-wall production (as many do) ineffective.
Lyme smart
What can we do when, even in our Lyme-aware region, people are struggling through missed diagnoses and debilitating symptoms that can potentially put them in wheelchairs and cost months or years of missed work or schooling? “The biggest thing people can do,” Bock advises, “is to have the facts, and to realize there are controversies, different presentations, and erroneous information out there. You need to be sure to ask a doctor if your symptoms might be Lyme—not by getting obsessive about it and telling the doctor ‘I think I have Lyme’—but don’t just take a doctor’s saying that you can’t possibly have Lyme because the test was negative or your symptoms aren’t the textbook case.” To find a doctor who recognizes the complex picture of Lyme, ask directly or check online for a Lyme Literate Medical Doctor (LLMD) trained in and qualified to treat chronic Lyme disease (www.lymenet.org). Also visit the website of ILADS, a nonprofit, international medical society promoting proper diagnosis and treatment of Lyme and related diseases (www.ILADS.org).
Remember, too, that your immune system is working to inactivate substances injected by a feasting tick. Within hours the bite area may become red and itchy—that’s a reaction to the injury, not pathogens (some ticks don’t carry any). But an EM rash and early Lyme symptoms that emerge days or weeks later indicate the immune system’s reaction to spreading microbes. So general immune support is another angle to protect against Lyme or other tick-borne diseases. In addition, probiotics (oral doses of live intestinal bacteria) maintain a healthy mix of intestinal flora during antibiotic treatment. For specific steps in keeping your body at its peak health to combat illness, seek the advice of a naturopathic doctor or integrative medical specialist.
Next month, we’ll look at the integrative treatment of Lyme disease and review popular alternative treatments.
This article appears in October 2008.
