By Heidi S. Puc MD, FACP, ABIHM
Lyme disease, a tick-borne illness caused by Borrelia burgdorferi spirochete that is transmitted to humans through a bite from an infected tick. This disease has a worldwide distribution and is the most common vector-borne disease in the US, according to the Centers for Disease Control (CDC). The CDC has even upgraded Lyme disease to official epidemic status in the US. Unfortunately, this disease is complex in its presentation as well as in its treatment.
There are more than 20 species worldwide of Borrelia, with 7 identified species described in the US and other co-infecting organisms, such as Babesia, Bartonella, and Ehrlichia are commonly transferred with Borrelia during a tick bite—making treatment even more challenging. Dr. Richard Horowitz, a noted expert in Lyme disease, defined this complex disease state as multiple systemic infectious disease syndrome (MSIDS). Patients having Lyme with coinfectors develop a multitude of clinical symptoms due to an attack by these invaders on the immune system. This causes inflammation and leads to a disease involving any of a number of tissues in the body, including the skin, brain, joints, muscles, nervous system, heart, and gastrointestinal system, and others.
Perhaps more complicated than the disease itself is the controversy that surrounds effective testing and treatment. Guidelines written by the Infectious Diseases Society of America (IDSA) are the main “rules” of clinical practice linked to the CDC guidelines, with the recommendations of the International Lyme and Associated Diseases Society (ILADS) at odds with these guidelines and not linked to CDC guiding principle. According to the CDC/IDSA, the “two-tiered” testing for Lyme disease involving an enzyme or immunofluorescence assay followed by a Western Blot test if positive, is an accurate, reliable test; if the first tier of testing is negative, one should “consider [an] alternative diagnosis”2 (even the CDC recognizes the limitations and inaccuracies of the current testing available and therefore states that Lyme disease is a clinical diagnosis).
In clinical practice, we find this test to be oftentimes inadequate, inaccurate, and better testing is needed. CDC/IDSA guidelines also state that for early stages of Lyme disease (Acute Lyme disease), patients usually recover “rapidly and completely”2 with oral antibiotics such as doxycycline, amoxicillin, or cefuroxime. For the smaller percentage of patients who go on to develop chronic/disseminated symptoms of Lyme disease (such as neurologic or cardiac involvement), the CDC recommends 28 days of IV antibiotics and reports that many of these cases are highly curable and treatable3 (in clinical practice, we find these challenging to successfully treat). We, the physicians at the Stram Center for Integrative Medicine, feel it would be important to educate physicians and other providers on both the IDSA/CDC and ILADS guidelines.
The experience of clinicians following ILADS guidelines, such as that of myself and my colleagues at The Stram Center, is quite different than the picture painted by the CDC/IDSA. We find the two-tiered testing to be highly inaccurate, with many false negatives (i.e., patients who truly have Lyme disease despite having negative results). More accurate testing is needed, and until then, diagnosis and management remains clinically approached. The Igenix test4 has been helpful in these false negative cases, but also not perfect. We find that chronic Lyme disease/MSIDS in some cases can be quickly and successfully treated with antibiotics and some supportive herbs, but in many cases not, and often such patients require prolonged therapies of various types, with changes in treatment usually based on clinical response.
Patients require an individualized approach, catered to their unique symptoms and situations. We find that chronic Lyme disease/MSIDS is truly of epidemic proportions and encompass a spectrum of diseases that desperately requires clinical and political attention, education and research, and financial/insurance support for affected patients of this growing health crisis. For more information, please contact the Stram Center for Integrative Medicine at 518-689-2244 or visit stramcenter.com.