Cure Unknown: Inside the Lyme Epidemic
It’s hard to fathom, especially from the outside but also from the inside, the madness surrounding the Lyme epidemic. How could such a widespread, debilitating, and potentially deadly disease have been allowed to flourish not only unchecked but untreated and unresearched, even actively denied, for so many decades? Why did it take me, personally, almost 25 years to be diagnosed when, as it turned out, I had a known history of tick bites and grew up in an area that, it turns out, had a serious outbreak of Lyme disease just when I first became sick? Why is there no good treatment for the disease, or even reliable testing?
Pamela Wientraub delves into all those issues. Weaving the personal and the political–Weintraub and her entire family were infected when they moved to the suburbs in the 1990s–she describes her own family’s fight with this insidious illness, and the broader picture of what was going on in the background.
The personal stories are interesting and will make anyone struggling with the disease feel validated in their lack of validation by the medical establishment, and are likely to tug on the heartstrings of those who haven’t had first-hand experience with Lyme disease (yet–your time is likely to come). More interesting still, though, is the documentation of how one of the major epidemics of the 20th and 21st centuries has been allowed to be swept under the rug, its very existence played down or outright denied.
Part of the problem is the nature of the pathogen and its consequences: Borrelia is a stealth pathogen, sneaking in and wreaking havoc slowly. People with Lyme disease don’t normally suddenly hemorrhage blood from their eyeballs and die, although I *have* had several incidents where I thought I was having a stroke–only to be appear perfectly normal to everyone around me. Instead, most of us become miserable and confused, with neurological problems that don’t always show up on regular scans and debilitating fatigue and weakness that is labeled a “subjective” symptom, as if a formerly athletic person, often with detailed and consistent records of their distances and times, losing most or all of their ability to walk is a “subjective” symptom.
Furthermore, as Weintraub discusses, borrelia is difficult to culture and our current serological tests are sadly lacking, even if one only considers borrelia burgdorferi sensu stricto and not all the other strains and substrains. And then there’s the definition of the disease…
Perhaps the most important aspect of the book is how it delves into the controversy surrounding the definition of the disease (is it something that causes arthritis? Or neurological problems?) and how that was affected by the push to find a vaccine. I, like, as far as I can tell, Weintraub, am more or less pro-vaccine in general, but in reading about the Lyme vaccine one can’t help but think that the anti-vaxxers have a point, they’ve just targeted the wrong vaccines. MMR and DPT vaccines probably *are* safe and effective, but the drive to find a vaccine for Lyme ASAP led to a perfect storm of problems, resulting in not just a potentially dangerous vaccine that was quickly pulled from the market, but testing and diagnostic criteria that exclude the majority of those actually infected, especially the sickest patients.
Weintraub also paints a picture of a nature that appears idyllic on the surface but actually harbors a hidden but terrifying danger. Which is true. Nature *is* terrifying and dangerous, and if we learn nothing else from the Lyme epidemic, I would hope that we learn that humans are not separate from the natural world, but deeply enmeshed in it, just like everyone and everything else (although I’m not holding my breath). Weintraub ends up by moving her family back to the safety of the concrete jungle of the city, safe from the sinister herds of deer she sees roaming the suburban paradises of New York and New England. Which is understandable–I certainly am no fan of playing in tall grass these days–but doesn’t seem like a good long-term solution. As discussed in “Lyme: The First Epidemic of Climate Change,” those sinister herds of deer may actually be diluting the Lyme epidemic more than spreading it, and the sterility and industrial pollution of the city can cause diseases every bit as terrible as Lyme, if not worse. In the end, we’ve slaughtered massive quantities of wild animals and invaded their territory, only to find that we’ve unleashed a threat even worse than the wolves and foxes we wiped out, and despite “sacrificing” large numbers of lab animals with the abandon and efficacy of Incans offering up their children for religious rituals, we’re still sick.
We need a paradigm shift if we’re going to get out of this alive. But in the meantime, reading “Cure Unknown” will be a good start to understanding how we got here.