Ticked Off: The Real Tragedy of Lyme Disease Diagnoses

Lyme Disease is the fastest growing vector-borne infectious disease in the United States,however, this condition was all but unknown until about 1977. Since 1991 the number of Lyme Disease cases in the United States has doubled with an estimate of 822 new cases per day.1 It is an epidemic that is now larger than AIDS, West Nile Virus and Avian Flu combined.2 Despite this, it is widely underreported, misunderstood, and misdiagnosed. Lyme Literate Medical Doctors are few and far between and the average patient sees five doctors in two years before being diagnosed.1 Due to a lack of awareness, one source shared that often sufferers are told that the symptoms are all in their head.2 What is it about Lyme that is so complex and hard to diagnose?

Lyme Disease is transmitted through a tick bite, but amazingly, that tick nymph could be smaller than the period at the end of this sentence. Fewer than 50% of Lyme Disease sufferers don’t remember a tick bite occurring.1 More interestingly, only one in two patients actually develops the classic “bulls-eye” rash used to diagnose Lyme leading to a 50% chance of misdiagnosis.1 Furthermore, diagnosis complications are caused by a lack of adequate testing. The most common tests for Lyme are indirect, testing the bodies antibody response to the infection, not the infection itself.3  The tests frequently give false negative results, as the testing has an estimated sensitivity of only 65%.1  

The Lyme infection is caused by a bacteria called Borrelia burgdorferi, however, there are five subspecies of the bacteria, over 100 strains in the US, and 300 worldwide.1 Current standard blood testing only tests for one strain, despite new species of tick-borne bacteria being discovered. Most ticks also carry multiple disease-causing pathogens called co-infections that increase the length of illness and prevent successful treatment of Lyme, also causing substantial confusion about the carriers of the condition. Deer ticks are commonly assumed to be the primary transmitters of Lyme, however, it has now been proven that three other ticks species are carriers.4 Physicians can often be unaware of this, leading to further late stage diagnosis and a higher chance of Lyme Disease becoming chronic.

Lyme Disease is also known as the “Great Imitator,” and this, unfortunately, is the most common reason for misdiagnosis. Lyme Disease can manifest symptoms from approximately 350 other conditions.4 Physicians have trouble differentiating Lyme from other difficult-to-diagnose multi-system diseases such as Chronic Fatigue Syndrome, Fibromyalgia, and Somatization Disorder.

Proper treatment begins with an accurate diagnosis. For an accurate diagnosis, we need better access to educational resources to become more Lyme literate. One giant step towards educational resources is a community with connections to peers who have the same symptoms and diagnostic frustrations, leading to proper treatment. Meeting with healthcare professionals armed with community crowdsourced information creates a better doctor-patient relationship. More importantly, we will become stronger self-advocates for accurate testing and treatment.


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