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Lyme Disease – An Overview

An Overview of Lyme Disease

THE DISEASE

A tick bite can expose a person to a variety of bacteria and other microorganisms that may make one sick. This can occur after a single bite or through multiple tick bites. In this overview, we will focus on the particular bacteria called Borrelia Burgdorferi (Bb) that is known to cause Lyme disease and is acquired from a tick bite. If antibiotics are not taken or are inappropriately administered soon after a bite from a Bb-infected tick, the patient is at higher risk for illness, which may occur suddenly or surface at a later time.

Finding the attached tick is difficult because the tick that carries this bacterium is very small and tick bites may occur where they are not easily seen. Often times, the tell-tale rash that can result from a tick bit, called erythema migrams, does not develop. Hence, a patient may not know they were bitten by an infected tick. They may soon begin to feel symptoms such as fatigue, muscle pain and spasms, sensory aversion, gut and bladder problems, bizarre neurological symptoms and memory loss. It is not unusual for cognitive difficulties to progress to the point that patients experience the inability to find their way home from everyday places, such as the grocery store and post office.

THE PATIENTS

Most patients that come to the Jemsek Specialty Clinic have seen 5 to 15 doctors for the symptoms listed above. They have seen neurologists, psychiatrists, rheumatologists, cardiologists, gastroenterologists, and internal medicine specialists. They have often been treated for one of more of their individual symptoms without knowing the cause of those symptoms. When treatment for their symptoms is stopped, the symptoms typically re-emerge. This is not unusual�if one stops taking high blood pressure medicine, the blood pressure usually rises again.

DOES LYME DISEASE EXIST IN THE CAROLINAS?

While not nearly as prevalent in the Carolinas as in the Northeastern states, Lyme disease certainly exists in our state, particularly along with coast and Piedmont areas. Also, an estimated two million new residents moved to the Carolinas from 1995-2005 and 60% came from the top 15 Lyme-endemic states, including Pennsylvania, Connecticut and New York. Many unknowingly bring chronic Lyme with them.

LYME DISEASE TESTING

Currently, the best test for Bb measures antibodies our body makes against this microorganism. While it may sound as though this test can easily spot Bb, it does not. This test focuses on a single strain, B31, which is mainly associated with arthritic symptoms. However, there are 12 known genospecies. One of these genospecies has over 100 strains in the United States and 300 strains worldwide. These are not included in the current test. For this reason, less than one 1 out of 2 people who have Lyme have a positive test.

Because of the testing problems, The Centers for Disease Control (CDC) has advised physicians that Lyme disease should be diagnosed based on the patient’s clinical symptoms and not the laboratory test. The laboratory test is used to report cases to the CDC, which is much different from treating a sick person. It is the experience of the healthcare providers at the Jemsek Specialty Clinic that if a patient:

  • exhibits many of the clinical symptoms (see above) AND
  • other treatments for some of many of the symptoms have failed AND
  • antibiotic therapy that has worked well with hundreds of our previous Lyme patients is begun AND
  • the patient responds well to the antibiotic therapy, there is a high degree of likelihood that the patient is infected with one or more strains of Bb not identified by currently available tests.

UNDERSTANDING BORRELIA BURGDORFERI

There is much to understand, and much that is not known, about Lyme disease. In very general terms, Bb is very smart; it is immune-evasive and has the ability to survive under unfavorable conditions. It can hide within the body’s cells to avoid detection and elimination by the immune system. When the Bb is stressed by lack of food or a change in pH, for example, it can then change its form into a cyst which enables it to be protected until conditions are optimal. If it is left on its own, it can interfere with the normal functioning of many organs including the musculo-skeletal system, the gut and bladder and the brain. Bb is particularly fond of brain tissue, hence the dramatic neurological changes in patients with Lyme. Well-known author Amy Tan has made many public statements about her declined ability to perform everyday functions. While she is profoundly better from her treatment, she has been left with some diminished neurological functions.

THE RESEARCH THUS FAR

To date, there are only three clinically-controlled studies that evaluated treatment of Lyme disease. Those three are National Institutes of Health (NIH)-funded studies, one opposed, one equivocal, and a more recent one supporting, longer-term antibiotic treatment. All studies have limitations. The conclusions from the first two published studies are questionable, however, because of methodological and study design problems. These have been detailed by the International Lyme and Associated Diseases Society and others. Compare these scant three studies to the thousands of clinically controlled studies about HIV/AIDS treatments, and one can begin to understand why there is so much controversy about the diagnosis and treatment of Lyme disease. Even if the abovementioned studies were appropriately designed, would they be enough on which to base a wide assumption of treatment? In medicine, that is not generally the case.

CURRENT TREATMENT GUIDELINE

The treatment guidelines that were drafted by the Infectious Disease Society of American (IDSA) and adopted by the CDC and most, if not all, health insurance companies, call for 30 days of antibiotic treatment for chronic Lyme disease. There has never been a study demonstrating that 30 days of antibiotic treatment cures chronic Lyme. On the contrary, much medical literature has been published in both the United States and Europe demonstrating that short courses of antibiotic treatment fail to eradicate the Lyme bacteria and that short treatment courses result in upwards of a 40% relapse rate, especially if treatment is delayed.

  • The International Lyme and Associated Diseases Society (ILADS) has advocated a second standard of care that differs from the IDSA standard of care. ILADS and its members have advocated for the following changes to be made to those guidelines promulgated by the IDSA and CDC:
  • Since there is currently no definitive test for Lyme disease, laboratory results should not be used to exclude an individual from treatment
  • Lyme disease is a clinical diagnosis and test should be used to support, rather than supersede the physician’s judgment.
  • The early use of antibiotics can prevent persistent, recurrent and refractory Lyme disease.
  • The duration of therapy should be guided by clinical response, rather than by an arbitrary (i.e., 30 day) treatment course.

By adopting these changes, physicians will no longer fear prosecution from their medical boards for treating Lyme beyond 30 days, patients will no longer be denied care and they will no longer have to battle their insurance companies for coverage of treatment.

HISTORY AND HOPE

There is much more to know about Borrelia Burgdorferi and the treatment of chronic Lyme disease. Dr. Joseph Jemsek and eight other infectious disease colleagues from around the country wrote to the IDSA in October 2005 and asked to be part of the panel that is currently reviewing the treatment guidelines. To date, a response has not yet been received.

Dr. Jemsek and his staff have been pleased to note that with their work of providing life-altering therapeutic intervention, their patients’ quality of life is often restored. In the process, much as been learned about treatment methods and treatment response. This information, along with what other Lyme-treating physicians around the country have learned, is all tremendously useful in understanding more about this debilitating illness and in providing more efficient and durable treatment.

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Jemsek Specialty Clinic
2440 M Street N.W., Suite 205
Washington, DC 20037

Phone: (202) 955-0003
Fax: (866) 457-0397

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