For patients, there is often nothing more soul-crushing than being inexplicably sick with doctor after doctor having no answers, or getting the wrong diagnosis and being led down the wrong path with the wrong drugs. But for patients with Lyme disease, either or both is common, because its every aspect has been so bitterly contested by scientists that the conversation has been sourly referred to as “The Lyme Wars” in medical journals.
And yet this should not be a solely academic debate: The Centers for Disease Control and Prevention estimated in 2013 that roughly 329,000 new cases of Lyme occurred every year when around 30,000 were reported. In 2017, 42,743 new cases were reported to the CDC, leading scientists to calculate that the true yearly incidence of new Lyme infections is now over 400,000 (and approximately 427,000 in 2017). Either makes the number of people infected with Lyme each year larger than the number of people diagnosed with breast cancer, HIV and hepatitis C combined. And that’s just in the United States.
But this is not just an American story: Lyme disease is well established in Canada and on the British Isles, it’s endemic in many parts of Europe, it’s been reported in China and it’s even been seen in Japan and South Korea. We’re in the midst of a pandemic.
Every facet of this infection has been mired in scientific controversy at the research level, often leaving clinicians and their patients at a loss.
Though it can sometimes be associated with a “bull’s-eye” rash, known as erythema migrans, most Lyme patients never get any rash at all: The original published studies on Lyme documented a history of a rash in only 25 percent of cases. And even in people who manifest the rash — despite its reputation for being easily identifiable — misdiagnoses abound because doctors are looking for the stereotypical bull’s-eye appearance when the reality is that about 80 to 90 percent are solid pink rashes with a round to oval shape and never blanch in the center. A study from Johns Hopkins demonstrated that 23 percent of Lyme rashes are not properly diagnosed.
The blood tests used to diagnose Lyme are four decades old and unacceptably inaccurate: A review of eight studies that evaluated the effectiveness of these tests revealed that they miss more cases than they diagnose. The result is that many people go undiagnosed and misdiagnosed, leading to a life that can be devastatingly altered or worse.
Lyme can be extremely serious, able to wreak havoc throughout the body — affecting the nerves and brain, the joints, the heart, the eyes and everywhere in between, resulting in anything from arthritis and mental illness, heart failure and dementia. It’s linked to a staggering list of symptoms and syndromes, and can be likened to its close cousin, syphilis. Lyme can even be deadly.