Life with chronic Lyme disease ("post-treatment Lyme disease syndrome") sucks

Karl Bode is a respected and talented tech journalist, but he labors under a tremendous burden: for nearly a decade he has struggled with 'post-treatment Lyme disease syndrome' -- colloquially known as 'chronic Lyme disease' -- enduring the twin struggles of a largely untreatable debilitating illness and skeptical dismissals from much of the medical establishment.

Bode contracted Lyme disease from a tick bite while clearing brush in his Hudson Valley home. After antibiotics, his symptoms disappeared, but a month later, he had a raft of 'bizarre new symptoms,' from 'severe arthritis in my hips and hands' to 'recurring and debilitating headaches, chills, cold sweats, frequent bouts of disorientation, vertigo, and even depersonalization, a terrifying sensation of feeling as though you are somehow outside of your physical body.'

More anitbiotics brought temporarily relief, but then the symptoms recurred, joined by 'insomnia and an extreme sensitivity to caffeine, sugar, and dairy.' A decade later, he still has frequent recurrences.

No one is really sure what's going on with PTLDS. The majority of people who contract Lyme disease get better, but an 'unspecified number' continue to experience long-term symptoms, sometimes lasting indefinitely. Lyme sufferers seek out 'Lime literate' doctors, who are prepared to make diagnoses based on symptoms, rather than bloodwork, but this has its own problems, with misdiagnosis (Lyme disease has so many symptoms that it is sometimes called the 'great imitator') and high expenses (Lyme literate doctors command a high premium for their services).

A decade later, Bode is living in the Pacific northwest, having relocated to minimize the risk of reinfection. He says he keeps his symptoms under control with an anti-inflammatory diet, along with yoga and stress reduction. But he believes that Lyme is underdiagnosed and more serious that we imagine, and that climate change is driving poorly understood tick-borne illnesses into new territory.

Further complicating public awareness is the fact that Lyme disease, per se, is only one part of the problem.

While Borrelia burgdorferi is the most common U.S. variant of the bacteria, Borrelia afzelii and Borrelia garinii are more common in Europe, and aren’t likely to be tested for if a patient contracts the diseases overseas and returns to the States.

Similarly, ticks carry a wide variety of co-infections including babesiosis, anaplasmosis, ehrlichiosis, relapsing fever, tularemia, and Rocky Mountain spotted fever. In the past two decades, seven new tick-borne germs have been discovered. And as warmer weather from climate change widens tick season, the problem is accelerating.

Often these illnesses aren’t tested for in states where they’ve historically been less prevalent, and many of these peripheral illnesses come with their own confounding symptoms. A bite from the lone star tick in Texas, for example, may result in the development of an allergy to meat, highlighting the poorly understood nature of these infections.

What It’s Like to Have Lyme Disease Forever [Karl Bode/Elemental]

(Image: Hannah Garrison, CC-BY-SA)