There are TWO standards of care for the treatment of Lyme disease.
Two professional medical organizations, the Infectious Diseases Society of America (IDSA), and the International Lyme and Associated Diseases Society (ILADS), each publish peer-reviewed Treatment Guidelines which have been accepted into the National Guidelines Clearinghouse within the U.S. Department of Health and Human Services. ( As of March 2016, The IDSA Guidelines have been removed from the NGC for being out of compliance, and are currently undergoing review.) These Guidelines are vastly different, reflecting the disagreements between these two organizations on a number of points relating to Lyme disease, including the question of whether the Borrelia bacteria can persist following treatment with antibiotics; the complexity of the disease; and the best approaches to diagnosing and treating it.
Mounting evidence indicates that the Borrelia bacteria can and often do persist. New research conducted at Northeastern University by Dr. Kim Lewis has found that “persister” cells, a previously unidentified morphological form of the bacteria, can survive traditional antibiotic treatment. Other research by Dr. Alan McDonald, Dr. Eva Sapi, and Dr. Garth Ehrlich (Drexel University) is beginning to unravel the mysteries of Borrelia biofilms. New discoveries are leading researchers to combinations of drugs that are killing the bacteria in the lab.
To date, the IDSA has refused to acknowledge this research. It is important to note that the IDSA denies the existence of “chronic” or long-term Lyme disease, and has not undertaken any research in “chronic” Lyme, because that is something they say doesn’t exist, so their construct to date has been solely focused on the early, or “acute” stage of the disease. The IDSA claims that symptoms that persist after limited treatment are not caused by continuing infection, but rather by other factors, including possible mental illness. Under the IDSA Guidelines, patients who have persistent symptoms are often misdiagnosed and treated for diseases they don’t have, or told that they have “MUS”, an acronym for “Medically Unexplained Symptoms”, even though the symptoms are consistent with Lyme disease.
The American Medical Association advises that when there are multiple Standards of Care for a condition or disease, the physician has an ethical obligation to present ALL options to the patient, and work with the patient to determine which option is preferred. This is not happening in the case of Lyme disease. This is a violation of patient rights, and patients should strongly advocate for themselves if they prefer the ILADS Treatment Guidelines.
The CDC plays a significant role in this debacle. The CDC has violated its obligations to remain impartial in the area of treatment options, and has advocated heavily for the IDSA position. Investigation has uncovered significant conflicts of interest linking leaders of the IDSA with CDC employees in the Vector-borne Disease Unit, and petitions and requests for internal review have been filed with the appropriate government oversight offices.
Patients have the right to ask for the treatment of their choice. While all physicians are aware of the IDSA Guidelines, they are not so familiar with the ILADS Guidelines. Here is a link that you can share with your physician. These ILADS Guidelines are current with the newest research, have been accepted by the National Guideline Clearinghouse, and comply with the rigorous GRADE standards for guideline development. https://www.ilads.org/patient-care/ilads-treatment-guidelines/
