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. Read the rest