My Story

This is me as a baby, healthy as anything, unbitten.

To become seriously ill at age ten is to have your entire conception of the world inverted and distorted, sharpened into prickly shards and bent around shadowed corners. Or at least this is true of any malady that defies diagnosis and/or clear boundaries between the imagination and the body. Surely it is true of hard-to-detect genetic disorders, mental illnesses, and Lyme disease.

What I mean is that if a child is stricken with a disease that is confusing for adults in any way, the child cannot rely on herself to be certain of what is real, what is the truth. Unlike a grown-up who gets sick, a child has neither a healthy point of reference to compare new symptoms to, nor the confidence to defend herself against adults’ doubts about the reality of her symptoms.

I contracted Lyme disease in 1992, the summer before fifth grade, in New York. That July, everyone was getting bitten by ticks at the Bronx Zoo, where I attended a summer camp. Eleven years later, I met a woman in the parking lot of my infectious disease doctor’s office. As I leaned on my cane and sweated in the spring heat, she told me she had worked for the zoo in the summer of ‘92, and had contracted Lyme disease there. She was angry at the zoo, which I didn’t understand at the time, but now I think I do. You can’t be angry at a tick.

One evening my back itched terribly, and I scratched so incessantly that my mother asked me to lift my t-shirt. The next day, both of my parents took me to the dermatologist, to show him what was on my upper back: two raised, red bullseyes next to each other, connected by a puffy, angry arch. The doctor looked at my back through his magnifying lenses, which made his eyes loom large. It’s probably Lyme disease, he said, and the blood test supported it.

That past winter, I’d heard a news piece on the car radio about the dangers of an epidemic called Lyme disease. I’d assumed people got it by eating rotten limes, and now here it was, promising to make my summer both exciting and unpleasant.

The doctor prescribed an antibiotic not typically used for Lyme disease—I believe it was erythromycin—because the right one sometimes stained children’s teeth. I took it for two weeks and life continued, though I remember being disappointed in how quickly my share of summer drama had gone away. Except for a bad case of sun poisoning as a result of antibiotic-induced photosensitivity, my tangle with serious illness had not been serious at all. Chicken pox had felt far worse.

Age eleven: I’m having fainting spells, tremors, and wild tantrums.

Age thirteen: I’m suffering from manic episodes and transient and shifting aches and pains.

Age sixteen: I’m cooling my heels in an adolescent psych unit for the better part of a year.

Age seventeen: I’ve completely lost my flair for mathematics, I nod off without warning all the time, I alternate between intense depression and burning hyperactivity, and my body can handle neither medications nor vigorous exercise.

Age twenty-one: I’m in college in Upstate New York, and I’m burnt out from feeling bad. I feel so bad that I rarely leave my bed, I don’t go to classes, and I shake solipsistically for hours at a time.

I go back home to Long Island, to my parents’ house. It takes some battling to get them to listen to me, to my wheedling insistence that I am sick, not a hypochondriac as they came to believe over the years when medical tests yielded absolutely nothing. Then they rally themselves and my mother takes me to doctor after doctor, just like she did when I was in my early teens, except this time we are more demanding. We want the doctors’ attention.

One morning, my mother drives me into Queens to see a hematologist to rule out my internist’s half-baked suspicion that I have some atypical form of leukemia. The doctor and her assistant literally laugh me out of the office, and in the car, while I hiccup and dribble tears down my shirt, my mother berates me for “throwing a tantrum.” She is burnt out herself.

That afternoon, at a dermatologist in Manhattan, my mother displays some kind of regret for her earlier behavior by reciting my disturbing list of symptoms to the doctor. It is for my benefit really, to make me see how sorry she is, and how much she believes me. And even so, the doctor hears it all, believes me in some implicit way that still makes me reel when I recall it, and asks me if I’ve ever had Lyme disease.

That’s all she has to say. There’s an almost audible click in the air as everything falls into the proper slot: the symptoms, the misery, the timeline of my decline. Even before I see an infectious disease doctor to confirm it, I am one hundred percent certain. I never got rid of my Lyme disease.

Well, and at first I see an infectious disease doctor who tells me there’s no way it could be Lyme disease, since 1)I was treated for 2 weeks with antibiotics in 1992, and 2)my recent ELISA was negative for Lyme. I’m disheartened, but my mother persists and so I do too. We call a Lyme disease support line later that day, and receive a referral to a Lyme-Literate Medical Doctor, or LLMD, as they are usually called.

LLMDs are all a little crazy, a lot brilliant, and brave to boot. They sometimes face medical board hearings in which they are fined stunning amounts or stripped of their licenses. They follow the guidelines for Lyme disease treatment set forth by ILADS, a chronic Lyme disease nonprofit, instead of the guidelines of the IDSA, a privately-funded group that influences America’s official Lyme disease party line: Lyme disease is easily treated with a two-week course of oral antibiotics, and that’s it. If you’re still suffering after that, either something else is physically wrong, or you need to see a mental health professional.

Here’s the thing: it is my belief (and others’) that the IDSA is being influenced a tad too much by drug companies and other agencies invested in Lyme disease untruths. I’ll repeat this again and again in my posts, but even two fullyears of antibiotics are wildly less profitable than the other drugs used to treat the many symptoms of chronic, undiagnosed Lyme disease. For example, research is beginning to show that a lot of people with multiple sclerosis, Alzheimer’s disease or Parkinson’s disease also test positive for Lyme disease (at least according to ILADS guidelines), which suggests that they all might be connected by this spirochete. The drugs involved in these sorts of neurological diseases are so expensive and so profitable, that to set them aside in favor of antibiotics is financial suicide. So the IDSA continues to push for a ridiculous approach to Lyme that leaves a whole lot  of people sick and disbelieved by their naive doctors.

All of this is to say that personality, politics and power are affecting the way people heal (or don’t heal) from Lyme disease more than medicine and research are. It is to say that you’re on your own with this. So find yourself an LLMD if you have or think you have Lyme disease.

And how am I doing now, twenty years after my tick bite, at the age of thirty? Well. I’m sick. And I’ll tell you all about it. Soon, I promise.