Once in a while a book comes along that sort of “changes everything”.
For what seems like many decades there has been a contentious and ongoing dialogue between those who believe that Lyme disease is some over represented, mythical condition that leads to patient histrionics and even malingering and others – including affected patients themselves – who understand that this is a profound disease that lingers and oftentimes is simply irremediable. Institutions like the Mayo Clinic, for example, rely simply on flawed and out of date laboratory testing that will leave patients hanging. They will give them no diagnosis at all or tell them that they are simply “depressed while they remain disabled with intractable symptoms.
But here is a meticulously documented story written by an individual who went to great lengths to uncover the origins of this mystery illness that emerged suddenly in the late 1970s and seem to be some kind of strange “summer flu” affecting the children of Lyme, Connecticut. It turns out that Willie Burgdorfer PhD, the microbiologist who became an infectious disease rock star for discovering the spirochete that seemingly caused what we then knew as Lyme disease in the intestines of the deer tick, might have been holding back and faking his “eureka moment”. For his 1982 revelation was possibly only half the story. Prior to his death, and with careful investigative journalism, Newby unravels the story that goes back to the 1950s and involves what effectively is a weaponized and crudely geneticized marriage between Rickettsia (the bacterium that causes Rocky Mountain Spotted Fever and Typhus) and Borrelia recurrentis (the cause of a well-known infectious disease called Relapsing Fever). The resulting mutant was not a massive “outbreak” such as what smallpox or Ebola virus might cause. Rather, it was a very slowly migrating arthropod and avium borne organism beginning in northeastern America, spreading to the Great Lakes, and evolving as well in Europe.
At one point Burgdorfer is asked how this disease got to Europe and Asia if it was actually weaponized here.
“Those damn Russians came and stole everything we were doing with it!” he said, as he threw up his arms in disgust.
Later he would tell them that government officials had visited him twice to question him about the missing agents.
It is well worth the read chilling as it may be. However, it should at least put some of the controversy to rest in terms of why this particular infection remains so difficult to diagnose and treat effectively. In large part it will no longer be acceptable to be as dismissive as much of Big Box Medicine is with patients who have tickborne illness. As syphilis was in the 19th century, it has become a subspecialty of its own that no longer can be ridiculed by the infectious disease snobs who themselves have no idea how to manage these patients.
It is far easier to sneer and claim “hoax” than it is to actually sit, listen and empathize, and carefully and methodically sort out solutions. Here is an interview with Newby: