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Informed Consent for Treatment of Persistent Lyme Disease

There is considerable uncertainty regarding the diagnosis and treatment of Lyme disease.  No single diagnostic and treatment program for Lyme disease is universally successful or accepted. Medical opinion is divided, and two schools of thought regarding diagnosis and treatment exist.  Each of the two schools of thought is described in peer-reviewed, evidence-based treatment guidelines. Until we know more, patients must weigh the risks and benefits of treatment in consultation with their doctor.

My Diagnosis.  The diagnosis of Lyme disease is primarily a clinical determination made by my doctor based on my exposure to ticks, my report of symptoms, and my doctor’s observation of signs of the  disease, with diagnostic tests playing a supportive role.

Doctors differ in how they diagnose Lyme disease.

• Some physicians rely on the narrow surveillance case criteria of the CDC for clinical diagnosis even though the CDC itself cautions against this approach.  These physicians may fail to diagnose some patients who actually have Lyme disease.  For these patients, treatment will either not occur or will be delayed.

• Other physicians use broader clinical criteria for diagnosing Lyme disease.  These physicians believe it is better to err on the side of treatment because of the serious consequences of failing to treat active Lyme disease.  These physicians sometimes use the antibiotic responsiveness of a patient to assist in their diagnosis.  Since no treatment is risk-free, use of broader clinical criteria to diagnose disease could in some cases expose patients to increased treatment complications. This approach may result in a tendency to over-diagnose and over-treat Lyme disease.

My Treatment Choices. The medical community is divided regarding the best approach for treating persistent Lyme disease.  At this time, many physicians follow the treatment guidelines of the Infectious Diseases Society of America (IDSA) that recommend short term treatment only and view the long-term effects of Lyme disease as an autoimmune process or permanent damage that is unaffected by antibiotics.[1]  Other physicians believe that the infection persists, is difficult to eradicate, and therefore requires long-term treatment with intravenous, intramuscular, or oral antibiotics, frequently in high and/or combination doses.  These physicians follow the guidelines promulgated by the International Lyme and Associated Diseases Society (ILADS).[2] Table 4 of the new IDSA guidelines strongly recommend against many of the common treatment approaches used by physicians who follow the ILADS guidelines, as set forth below:

Table 4. of IDSA Treatment guidelines

Selected antimicrobials, drug regimens, or other modalities not recommended for the treatment of Lyme disease.

Doses of antimicrobials far in excess of those provided in tables 2 and 3

Multiple, repeated courses of antimicrobials for the same episode of Lyme disease or a duration of antimicrobial therapy prolonged far in excess of that shown in table 3

Combination antimicrobial therapy

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