Lyme disease has taken over the Eastern USA and spread to many European countries. Though many cases go undiagnosed and unreported, it’s quite likely that there are some 500,000 new cases per year. Since up to 20 percent of cases devolve into long-term infection—whether initially treated or not—chances are good that by now there are more than a million people suffering the debilitating effects of long-term Lyme.
Lowell Miller was first bitten by the black-legged tick that carries Lyme bacteria in 1982, long before the disease was known generally or by the medical profession, even in places where it has become, by now, endemic. And so he lived with Lyme for over 40 years, the majority of his adult life.
Unfortunately for patients like Miller, the bacteria that causes Lyme (B. burgdorferi) doesn’t always result in acute symptoms right away. It grows slowly and builds up gradually in bodily tissues, most often in joints and the nervous system. Because it grows slowly it can remain undiagnosed and untreated for years. Compounding the problem, the bacteria has developed strategies for evading the body’s immune responses, so symptoms of disease may not sound alarm bells demanding treatment even as the bacteria is gradually, inexorably, occupying its favored niches and building resistance to a cure. It took 20 years for Miller’s first radical neurological symptoms to break through in his initially untreated case.
And then, because existing treatments have limited effectiveness against this embedded enemy, a tipping point was reached; the acute symptoms kept coming and coming.
Lyme with a Twist chronicles the unfortunate adventures of his long-term Lyme, and his almost surreal encounters with the medical system. Like many with this chronic illness he found both mainstream and alternative approaches sadly lacking and ineffective.
In wry and finely written scenes we find him failed by an extended sequence of arrogant specialists, well-meaning but unscientific “functional medicine” practitioners, shamans and charlatans. Readers will be fascinated by the Alice-in-Wonderland maze of twists and turns and strange characters that confront anyone afflicted with long-term Lyme. The drama was never-ending.
Miller turned over every rock in an effort to escape his prison of illness. Finally, when hope was all but lost, he made himself a guinea pig to test laboratory information he discovered at Johns Hopkins University. There had been no human trials, no FDA approvals, not even a mention from the CDC. But necessity drove him to experiment, desperate to recover his health and his life.
And the result is the “Twist.” For Miller, this experiment was an almost miraculous success. Will it work for everyone? Readers will have to discover that for themselves.
