Differing Medical Opinions about Diagnosis and Treatment of Lyme Disease

Medically recognized and published standards of care and diagnostic practices are, generally, the only medical source that physicians, medical boards, and associations will accept when considering treatment for a condition. These standards are viewed and used as the appropriate response to diagnosing and treating individuals.

Because Lyme disease and other tick-borne associated illnesses are a complex problem for scientists, practitioners and patients, controversy abounds in the medical profession as to how best to diagnose and treat tick-borne disease. For example, some physicians and health agencies deny even the existence of an entity called “chronic Lyme disease” after initial treatment failure. Additionally, different conclusions have been drawn from peer reviewed research on the disease fueling debate as to whether or not to use long-term treatment strategies. All of this has led to an environment in the medical community where there are two different medical opinions:

1) One medical opinion: Some physicians rely on a narrow definition of what Lyme disease is, how it should be diagnosed, and how it should be treated. As a result of these narrow guidelines, physicians, at times, will fail to diagnose some patients who actually have Lyme disease or another tick-borne illness. For example, they heavily rely on a two-tier testing process to test for antibodies of Lyme. If the initial ELISA test is positive or equivocal, it is then followed by a Western immunoblot test for acute Lyme. A negative test indicates no infection even if the patient’s clinical picture indicates Lyme. Or, at times, where Lyme is a diagnosis, some physicians will prescribe short-term treatments. If these short-term treatments don’t produce sustained health or better outcomes for the patient, this leads to the conclusion that Lyme disease was not the problem and other diagnoses are given like fibromyalgia, chronic fatigue, depression , “post Lyme syndrome,” etc. (An example of a narrower guideline is published by the Infectious Disease Society of America or IDSA.)

2) Another medical opinion: Other physicians use broader clinical criteria for diagnosing Lyme and associated diseases. While diagnosis certainty is being debated in the medical community, some physicians believe it is better to err on the side of treatment because of the serious consequences of failing to treat active illness like Lyme disease. They recognize that the standard testing uses antibodies to the Lyme infection and antibodies can take several weeks to develop giving a “false negative” result. They therefore rely on a clinical diagnosis, left to the judgment of the physician whether or not to treat based on objective and empirical evidence.These physicians also use longer treatment protocols due to the very long replication cycle of the Lyme bacteria and use the clinical responsiveness of a patient to specific treatment to assist in diagnosis and follow-up treatment. It is also true, however, that diagnosis of fibromyalgia, lupus, rheumatoid arthritis, etc. often exist alone, without any relation to Lyme disease, Babesiosis, Ehrlichiosis, or Bartonellosis. In these cases, a rheumatologist or neurologist or other specialist may be best suited to manage a patient’s care. (An example of a broader guideline is published by the International Lyme and Associated Diseases Society or ILADS.)

And, this situation of having multiple guidelines is not as uncommon as it might seem. Up until its demise in July of 2018, the National Guidelines Clearinghouse had identified, at least, 25 conditions with differing sets of guidelines from separate organizations.

While her specific initial Lyme infection date is unknown, Susan believes it may have occurred in 1996 at a southern Indiana campsite that was overrun with thousands of freckle-sized ticks.

However, despite seeing specialists in internal medicine, immunology and rheumatology, Susan continued to experience a myriad of symptoms, including joint swelling, immobility, pain and bruising, mysterious inconsistencies in liver function, suppressed immune function, extreme fatigue, memory loss and other issues. At one point, she was even required to go on bed rest for nine weeks. Still, she had no diagnosis to help make sense of all of these symptoms.

Shortly after the 2012 bite, while experiencing dramatic neurological symptoms, Susan visited the emergency room but was sent away without treatment despite visible symptoms.

Less than 24 hours later, she saw a Lyme-experienced medical doctor who began treatment immediately. Having tried strong rounds of oral antibiotics (much to the dismay of her digestive system) and herbal protocols in the months that followed, Susan started intravenous antibiotic therapy in April 2013 and finally saw significant improvement over the course of the ensuing months.

Susan also adheres to a strict grain-free, sugar-free, alcohol-free, caffeine-free diet with minimal processed food – a lifestyle that has augmented her treatment to tremendous effect. “Diet and detoxification have been critical components to my healing,“ Susan says. “I know in my heart that I would not be as far along as I am in my healing without these protocols.”

Of course Susan’s bubbly, bright, can-do personality still shines through, even in the face of this debilitating illness. Because she has lost a significant amount of weight, some people don’t even recognize her. But her spirits were lifted when, one day, an old friend came around a grocery aisle to tell her they heard her laugh across the store.

Susan is the co-founder of Indiana Lyme Connect, served as the secretary to the board of directors and after years of treatment returned back to the workforce. Susan returned to work part time in September 2017, and in March 2018, nearly six years after her diagnosis, she accepted a full-time position in her field. Susan is beyond thrilled with this development, remains diligent about her treatment and self-care, and is hopeful for the future.

“I am truly humbled by God’s grace and the love and support of my family, doctors, friends and the Lyme community.”

Quick Reference

The following evidence-based quick reference materials offer a concise, yet comprehensive overview of Lyme disease and its co-infections, as well as strategies for diagnosing the illness based on a myriad of symptoms and warning signs – both physical and psychiatric – that often either go unheeded or misattributed to other conditions.

These materials are presented in a single sheet or brochure format to facilitate easy dissemination in a physician’s office, as well.