”the deal with so many chronic illnesses is that most people don’t want to believe you. They will tell you that you look great, that it might be in your head, that it is likely stress, that everything will be okay. None of these are the right thing to say to someone whose entire existence is a fairly consistent torture of the body and mind. They say it because they are well-intentioned usually, because they wish you the best, but they also say it because you make them uncomfortable. Your existence is evidence of death, and no one needs to keep seeing that . . .”
For those who might not be familiar with the condition, Lyme disease is caused by bacteria (Borrelia burgdorferi) that are transmitted to humans by black-legged (aka “deer”) tick bites. If the tick is removed within 24 hours of attaching to the skin, there is a good chance that a person (or animal) won’t be infected with B. burgdorferi, though he could still contract another tick-borne disease. The first sign of Lyme disease is usually a bull’s-eye rash, which appears within 3 to 30 days of the bite. After this, a person often feels feverish and flu-like, with muscle aches and pains. The CDC has been aware of the disease since the 1970s, when it investigated a cluster of cases (in New England) of what seemed to be juvenile rheumatoid arthritis that had been preceded by the distinctive target-like rash. However, the disease’s link to ticks was not known until 1981. Nowadays, infectious disease experts recommend two diagnostic tests be done in combination: the ELISA and the more reliable Western Blot test. Since it takes four to six weeks for the body to generate antibodies to the bacteria, initial blood tests may be negative. If Lyme is suspected, a patient is typically prescribed a 10-21 day course of doxycycline (antibiotic) treatment.
Chronic Lyme disease—that is, disease which appears to persist after treatment has been completed—remains a controversial diagnosis. A decade ago, an article in Future Microbiology noted that there was “growing scientific evidence that chronic Lyme disease does exist, and that this clinical condition is related to persistent infection with B. burgdorferi as shown by microbiological and molecular studies.” All that I could find on the topic was that “Experts believe lingering symptoms may be caused by residual damage to tissues and the immune system, and some may not be related to Lyme disease at all”. The CDC and the NIH recommend against using the term “chronic Lyme disease”, acknowledging only that “Physicians sometimes describe patients who have non-specific symptoms (like fatigue, pain, and joint and muscle aches) after the treatment of Lyme disease”. These people are said to suffering from “post-treatment Lyme disease syndrome” or “post Lyme disease syndrome”. According to the CDC, the cause of the syndrome(s) is not known. Porochista Khakpour’s tests meet CDC standards for a diagnosis of Lyme disease. Her ordeal with what she says is “chronic Lyme disease” but which experts might refer to as “late disseminated, neuropsychiatric Lyme” has been harrowing. Because she was unaware she’d been infected, she didn’t receive prompt antibiotic therapy, and the disease progressed. She also has co-infection with other tick-borne bacteria/parasites: ehrlichia, and perhaps babesia and bartonella. It is possible that these have further complicated the picture. Khakpour has been chronically ill for years and had hoped to write an inspiring book with full recovery as the happy ending. That was the book she sold. It was not the book she wrote.
I was initially interested in reading her book because Lyme disease is being diagnosed with increasing frequency in Ontario, where I live. It is even being seen more often in dogs. A few years ago, a relative of mine (who happens to have spent a great deal of time outdoors in tick-prone regions) developed strange neurological symptoms and was found to have sensory deficits in his lower leg. A neuron was knocked out, as he puts it. From time to time, we’ve wondered about his exposure to ticks. He recalls no bull’s-eye rash, but apparently a rash doesn’t appear in 20-30% of cases. The tests, too, aren’t without their problems. It’s possible, then, to miss a diagnosis.
Sick
is not strictly an illness memoir. For the first 100 pages, the book is more a general and amorphous personal narrative of young adulthood. It gives the reader a sense of what it’s like to be a refugee who arrives in America from a suspect, “enemy” country, and it explores one person’s sense, since childhood, of not being quite right or comfortable in her own body. Early in life, Khakpour had an unusual response to anesthetic drugs. She also appears to have experienced seizures, seemingly triggered by emotional distress at her parents’ late-night arguments. These left her “feeling like death” the following morning. It is not initially clear whether Khakpour’s long discomfort in or with her body was due to her contracting Lyme on a hike during childhood or because of an earlier, deep, unidentifiable alteration in immune function due to PTSD, as a result of her and her family’s flight from revolutionary Iran (an idea she briefly floats early in the book).
Khakpour was only diagnosed with chronic Lyme disease as an adult. She attended university in New York, and, around that time, also visited a number of Lyme “hot spots” in the state. It’s impossible to know exactly when or where she was infected. The reader also doesn’t know which Lyme camp the doctor who diagnosed and treated her is affiliated with. Infectious disease experts are distressed, for lack of a better word, by the emergence of a group of non-infectious-disease doctors, who use questionable tests to diagnose Lyme and who have even more questionable ideas and sometimes quite harmful treatments to deal with it. Damaging antibiotic therapy that lasts for years is not unheard of, for example.
Although Khakpour’s prose can be engagingly informal, it is sometimes vague, rambling, and imprecise. She occasionally admits to not knowing what she feels or means, and some of her statements are cryptic. About one romantic relationship, for example, she writes, “I felt bored . . . but somehow also chosen by it. But maybe I was chosen by something else.” Like what, exactly? I wish Khakpour had been slightly more inclined to clarify this and other fuzzy observations.
I also had a hard time keeping track of the order in which events had even occurred. Khakpour’s multiple boyfriends, numerous car accidents, endlessly changing living arrangements, and her addiction to benzodiazepines—well, the chronology of it all is pretty confusing. If you’re okay with a patchwork, impressionistic account of an aspiring writer’s life and baffling illness, this book won’t bother you. I tend to like a little more advanced-authorial-processing (before writing) and a bit more shape to the personal narratives I read. However, given that the author was obviously very ill as she wrote, the disorganization, vagueness, and imprecision are perhaps understandable. An editor ought to have taken a more prominent role in the book’s production. Regardless—by the halfway point, I was invested in Khakpour’s story, and found that her account gained momentum.
Khakpour herself is the first to admit that the episodes in her story settle around the various partners she happened to be with at particular points in her illness. It’s hard to keep track of all these men, but rather amazing to think so many would stick around to look after her. She moved frequently, often finding herself back in much-loathed LA, where her parents live, whenever a severe health crisis occurred. Eventually, she would receive a diagnosis and some rather unconventional treatment, which worked for a time.
It is evident that medical science still has much to learn about how to deal with patients who don’t know they’ve been bitten by an infected tick, haven’t received timely antibiotic therapy, and are confronted years after the fact with a diagnosis of late disseminated Lyme disease with rheumatological, neurological, and even psychiatric symptoms. Although the book is not intended as a cautionary tale, I can’t see how anyone can finish it without being more cognizant about what a tick bite can do. Checking yourself after you walk in the woods or long grass is just a very smart idea.