Lyme disease was first recognized in 1975 after researchers investigated why unusually large numbers of children were being diagnosed with rheumatoid arthritis in Lyme, Connecticut, and two neighboring towns. Some of the children reported tick bites and a skin rash before the joint pains started. The children had lived and played near wooded areas at the height of the summer tick season. Further investigations discovered that tiny deer ticks infected with a spiral-shaped bacterium or spirochete (later named Borrelia burgdorferi after a French biologist (Amadee Borrel (1867-1936) and an American entomologist (Willy Burgdorfer 1932-2014)) were responsible for the outbreak of rash and joint inflammation in Lyme disease.
Spirochetes are a class of thin long flexible spiral-shaped bacteria commonly found in deer and rodents. Twenty-one of the fifty-two identified species of Borrelia are members of the Lyme disease group which infects people in many parts of the world including North America, Europe and South East Asia.
Black-legged deer ticks acquire the Borrelia bacteria from mice, other small rodents, and some birds by feeding on their blood, and subsequently laying their eggs into the blood of deer, other animals and humans, where they reproduce in two-year cycles. Ticks can carry more than Borrelia. Babesia, Bartonella, and Anaplasma are some of the additional bacteria that can be transmitted with Lyme.
Since national Lyme surveillance began in the early 1990s, the number of annual Lyme cases continues to increase. According to the Center for Disease Control (CDC) 30 000 plus new cases of Lyme disease are reported each year, and 300 000 people are estimated to be diagnosed and treated each year. This increase may be associated with warmer summers and longer seasons of tick activity as well as increased human exposure and heightened public awareness of Lyme disease.
Lyme disease is easy to diagnose if there is a history of a tick bite, followed by the “classic” halo rash around the bite, followed, one to two weeks later, by a reddish non itchy rash over the entire body, called erythema migraines. These first symptoms are easy to recognize and to treat: Within 48 - 72 hours of a tick bite, Lyme disease can be prevented with one or two single doses of the antibiotic Doxycycline. Patients who have a disseminated rash receive three to four weeks of the same antibiotic. 80% of these patients will not progress to the next stage of Lyme disease. However, only 20-30% of people exposed to Borrelia will recall a tick bite and develop the classic halo rash which is one of the reasons why the diagnosis of Lyme disease is often missed.
Weeks to months later, fifteen to twenty percent of patients may develop headaches and neck stiffness, swelling and pain in the hips and knees, aching in tendons, muscles, and bones, shooting pains and tingling in the hands or feet (neuropathy), drooping on one or both sides of the face (palsy), irregular heart beat and palpitations (carditis), intermittent dizziness, problems with concentration and memory; and fatigue and exhaustion.
Identifying Lyme disease at this stage requires two or more blood tests for Borrelia antibodies as well as surface antigens of the bacterium. Sometimes testing for co-infections (bartonella, ehrlichia, and anaplasma) helps establish the diagnosis of Lyme disease
A number of different tests can detect Lyme. Ongoing controversy about the validity of each of these tests has split the medical community since the early 2000s. The CDC (Center for Communicable Diseases) currently recommends a two-step process: ELISA and Western blot. Results are considered positive only if the both tests are positive.
Because of spirochetes’ ability to “hide” in individual organs and cells, antibody formation can be inhibited or undetectable. Even in patients with typical symptoms of Lyme disease, these tests can come back negative. More specific testing can now establish unique metabolic profiles for Borrelia organisms by identifying a number of proteins and protein fragments (peptides) on the surface of the Borrelia organism, called “bands.” While there is ongoing disagreement about how many specific bands are needed to establish the diagnosis, there is consensus on the need for more reliable testing.
Even more controversy surrounds the diagnosis of chronic Lyme disease, often called post Lyme disease syndrome. Are these patients’ symptoms due to ongoing Borrelia infection, often not detected with available testing? Or does Lyme infection trigger an auto-immune disease in which hyperactive immune cells attack the body’s own joints, muscles, nerves, and the central nervous system (CNS) – brain and spinal cord? Such auto-immune responses following infection in only some individuals are thought to occur in other diseases, such as Guillain-Barre syndrome; Chronic Fatigue syndrome, and perhaps Fibromyalgia.
Between 10 to 20% of Lyme infected patients will have ongoing problems of joint and muscle pain, fatigue and cognitive dysfunction (often referred to as “brain fog”) as well as other neurological symptoms six to twelve months after exposure to Borrelia. The development of chronic Lyme disease seems to correlate with greater severity of symptoms at the beginning of the infection, and delayed or no antibiotic treatment. Patients with chronic Lyme more often test positive for co-infections with Babesia, Bartonella, and Anaplasma.
Parts of the Infectious Disease world continues to deny the existence of chronic Lyme disease, pointing to the many vague and sometimes inconsistent symptoms which Lyme disease shares with other poorly understood “syndromes,” such as Chronic Fatigue and Fibromyalgia. Chronic Lyme disease appears to be latest newcomer in this group which affects women twice as often as men. Could it be that there are real differences in immune function among different individuals and between women and men?
These questions reappear in emotionally charged debates in both professional and lay communities and have led to “Lyme wars” - heated debates which can get in the way of useful Lyme research as well as adequate treatment of patients with the Lyme disease.
Patients have been ridiculed and denied reimbursement for visits and drugs by insurance companies; Lyme ‘literate’ providers have been subjected to censorship from their Medical Practice Boards and, in some cases, lost their licenses for treating chronic Lyme.
As a result, Lyme patients are having a hard time finding providers willing to take on their care. At Living Well we do not believe that patients’ symptoms are “imaginary.” There is no doubt that the symptoms of chronic Lyme disease are “real” and can be devastating. Like many providers, we often cannot find a diagnosis or label for the symptoms described. But we do reassure patients that we can help each other in finding ways to make them feel better. This sometimes involves additional lab tests, or imaging, or consultation with Lyme specialists, it also involves a detailed review of living habits, including nutrition, exercise and fitness level, sleep characteristics, emotional well being, and the goals they have set for themselves. In our center, people with chronic Lyme or post therapy Lyme syndrome, get tested or retested for Lyme and co-infections as well as other diseases with similar symptoms, such as fatigue, lack of energy, “brain fog,” joint and muscle pain. Not surprisingly, they often test positive for several diseases, such as Lyme plus Chronic Fatigue Syndrome or Fibromyalgia or Multiple Sclerosis. Antibiotics alone are usually not enough to make them feel better.
We ask people to follow one of several immune support building regimens, tailor made for each individual, such as herbal and naturopathic supplements as well as exercise, gentle physical therapy, massage, and other hands-on methods. Patients are also asked to support their intestinal immunity with probiotics on a daily basis and are carefully monitored for diarrhea and C. difficile.
Patients who improve with three months of oral antibiotics, are asked to stop for at least a month, and get retested. If they start becoming symptomatic again after one or more months, they get restarted on another three months course of three different antibiotics, once again accompanied by herbal and naturopathic immune support, probiotics and as optimal living habits as they can manage.
Some clients have done well with a single three months course of antibiotics and remained symptom free. Others have had to restart the treatment after only one month’s respite. Others have not improved with the first three months treatment cycle at all. They will get retested for Lyme and co-infections before considering further therapy.
We feel that we help enough people to do better to warrant this purely empirical approach. In the current climate of uncertainty, we choose to believe our patients’ account of their symptoms and help them figure out what might make them feel better. Ultimately, we believe, it is mobilizing and supporting the patient’s own desire and ability to heal which accounts for the successes of this approach.
In the history of medicine, many diseases were once labeled “imaginary” as long as medical science did not understand them. Tuberculosis, HIV/AIDS and multiple sclerosis were some of these “unreal” “syndromes.” Patients with Chronic Lyme disease are stuck in this dilemma now as well. But that does not mean that every attempt to restore their well-being should not be made in the interim. The time will come when we will understand what happens to people with chronic Lyme disease, and we will find it hard to believe that anyone ever denied or doubted its existence. memory.
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Darin Ingels and Amy Myers MD