The Nightmare in the Leaf Pile

How a childhood rite of passage became an intergenerational health debacle — and how to make better choices for your family.

The dogs woke me early Sunday morning, eager to reach the October wonderland of leaves carpeting Central Park.

Not long after we arrived, I spotted a young mother filming her toddler as he took his first wobbly steps toward a huge leaf pile. It was a classic scene that melted most onlookers’ hearts—except mine. Honestly, I had to fight the urge to shout, “Stop!”

A leaf pile waiting for kids to jump in. Unfortunately, this warm, dark, and wet microenvironment also makes a perfect home for ticks.

Am I one of “those” mothers? A paranoid killjoy who never let her kids get dirty? Hardly. If anything, I’ve always been rough-and-tumble about the outdoors—which is precisely why I know how much danger can lie in wait, even in nature’s most seemingly harmless bounty.

People often associate tick bites as a summer danger, but my first known attachment happened in October 1976. It was a gorgeous, unseasonably warm morning filled with the rich aromas we associate with the season. I’d had apple cider and homemade doughnuts for breakfast and now I stood, squinting into the sun—an eight-year-old red-haired, freckle-faced girl—waiting to launch into the enormous leaf pile we had made in our Westchester back yard.

My older sister had just finished a flip. It was my turn again. Not as brave, I pawed a few acorns away with my royal-blue Adidas, adjusted a loose strap on my overalls, counted to three, and did a shallow swim-team dive; a belly-flop, really. My head disappeared beneath the leaves as I breast-stroked forward, giddy with the joy of total immersion in my favorite season.

8 years old

When our mother finally called us in for lunch, my hair was full of twigs and crumbly leaves. I didn’t realize that I was also hosting an uninvited guest; one that couldn’t be brushed off with a wave of my mother’s hand, or even by the soap and water in the bath I took that night. I didn’t discover the freeloader until the following afternoon, when I paused, during a game of tag, to put my hair into a pony tail.

“What’s that?” my big sister asked, pointing to a spot behind my ear where the lobe met my neck.

My fingers found the destination quickly. I felt something hard there; like it had a shell, or a coat of armor. Panicked, I tried to pick it off, but couldn’t. Our mom was inside making lunch, so we summoned our dad, who was nearby with his rake. After close inspection, he announced, “It’s a tick.”

“Gross!'“ we both screamed.

Our dog sometimes got a tick. They looked like big, black boogers. And they held on so tight, our mom had to drown them in oil before pulling them out with a tweezer.

We didn’t have any Baby Oil near the yard, so our dad employed a different strategy. Pulling a box of matches from his pocket, he lit one, blew it out, and pressed the smoldering tip to my neck. I yelped, but the technique worked. While I soothed my burn, the creature released its grip and fell to the ground like a fat, charred raisin.

“She’s bleeding!” my sister cried, drawing the focus back to me.

“The tick is bleeding,” my father corrected. “Isabel is fine.”

I now know that the best way to remove a tick is like this. I also know to save it, put it in a zip lock bag, and send it to a lab like this one to be analyzed. But we knew nothing about that back in 1976.

In fact, the tick bite was long forgotten by the time I woke up roughly a week later in my Manhattan bed in the middle of the night, my cheek marinating in a puddle of vomit I couldn’t move out of because my neck was so stiff I couldn’t lift my head. When my mother took my temperature, she discovered it was 104.

These are textbook Lyme symptoms, but, back in the fall of 1976, no one outside a small Connecticut town called Lyme—just north of our weekend house— had heard of the disease researchers were just beginning to name.

The morning of that first stiff neck (there were more to come), our Manhattan pediatrician made a house call—because in 1976, that was still a thing—and diagnosed me with the flu. (It was early for flu season and neither of my sister’s caught it, but that’s what he said I had and we didn’t question doctors in our house). He prescribed 2 baby aspirin and suggested my mom get me a different pillow. I was back at school by Tuesday.

Was I all better? Hardly. My symptoms came and went over the years, but I loved school and I hated staying home in bed. So I did what many kids do when they don’t feel well all the time—I hid it.

Besides, my problems weren’t that bad: occasional ringing in my ear; shin splints; pain in my knees; allergies; warts on my hands; burning flares of red up my tendons; growing depression and anxiety. My parents, and even my kind pediatrician, didn’t pay too close attention. I was just “a kid.” And “kids” got sick. It was part of growing up. I spent most of my time immersed in dance classes, piano lessons, going to Hebrew school, doing homework, participating in plays, hanging out with friends.

The idea that a single tick bite could alter a life—multiple lives including my future children conceived decades later—was unimaginable outside stories set in places like Africa, where everyone knew you could Malaria, which was bad for unborn children. But in NYC? How could anyone know?

But some people did know. Word was getting out.

And by the time I was a mother of two young children, both struggling with a constellation of autoimmune and neurological issues (some of which defied diagnosis), information was already out there that could have helped us.

But none was offered. So, I became my own detective. Struggling with a host of autoimmune challenges myself, I began wondering if something hereditary was at play. When I asked my OB and pediatrician if there could be a connection between my autoimmune issues and my children’s constellation of challenges, both doctors gave me the same pat answer: “There isn’t any known cause for why some children fail to thrive.”

Which wasn’t true. And still isn’t.

Had the medical establishment of the time been diligent about continuing education, both of my high-priced doctors (with multiple diplomas and awards on their walls) should have know these facts: Lyme disease can be transmitted in utero, infecting and affecting the developing fetus.

The first confirmed case of congenital Lyme disease was reported in 1985.

My children were born in 2001 and 2009—ample time for the American Medical Association to have integrated Lyme awareness into its syllabi like it does with all other major medical advances. Word most certainly should have reached the doctors who treated me and my family through the 90s and early oughts. Yet despite my lifetime of symptoms; and despite the lengthy questionnaires I filled out (no, I didn’t have shrapnel in my eye; no, I didn’t have whooping cough or a pacemaker) not a single doctor ever asked if I’d been bitten by a tick.

They all took long lifestyle interviews, too. They were aware that I grew up in tick-infested Westchester. They knew we had a summer house in the equally infested Hamptons. I had a dozen or more symptoms by the time I was growing babies in my womb including roving arthritis, Bell’s palsy, brain fog, and treatment resistant depression—but not one of my many doctors or the ones that went on to treat my children connected the dots.

I was 48-years-old when I finally saw a Lyme-literate doctor named. I began by telling him that I had tested negative for Lyme disease multiple times. This is when I finally learned the crucial reality: regular Lyme tests offered by places like Labcorp or Quest are unreliable. The only test he used for diagnosis was an IGeneX bloodtest, whose results confirmed his suspicion: I had Borrelia burgdorferi, the infection we know as Lyme disease, plus the co-infections, Bartonella and Babesia. Both my children tested positive for the same.

Still trying to process the magnitude of our health debacle, we began treatment immediately. Some of it helped and, in time, we all found steadier ground. But there is still no cure for Chronic (also called “Late-Stage”) Lyme disease; only endurance, and the search for meaning inside the mess.

I found mine in community, hosting Zoom support groups for mothers like me. Week after week, we compare notes and trade resources. Coventional treatments like antibiotics have been successful for some of us and for some of our children; but often, we talk about alternative approaches which are more affordable, or tackle the problems from a different angle. I hear about red light therapy; amp coils; herbal tinctures; neural retraining methods for managing pain.

I also hear about the devastation so common in our community. Despite different states, doctors, and diagnoses, the pattern repeats: our children are often on the autism spectrum; have seizures, rashes, feeding tubes, relentless pain. They cut themselves or engage in dangerous activities or habits as a way to cope with their misery. Mothers have left their careers to become full-time caregivers; some have raised housebound children who are now house-bound adults—never able to attend school or college or hold a job.

Many congenital Lyme sufferers live with overlapping conditions—autism, POTS, PANS, or autoimmune syndromes that blur the line between body and mind because inflammation of the brain can cause any number of mood disorders or physical malfunctions that make life a challenge.

Some report gender dysphoria or change in sexual orientation as an occurrence in the population of Lyme-afflicted kids. Is there a link? What about sleeping disorders? Are these connected to Lyme disease? These are the kinds of issues we debate in the safety of my meetings and why they’re such a lifeline for a community that has been so deeply and deleteriously marginalized.

HERE ARE SOME SYMPTOMS OF CONGENITAL LYME DISEASE:

We’ve also all heard the same dismissals: our children are just suffering from “anxiety.” They’re “attention-seeking,” or “hormonal.” Gaslighting by the medical community remains the rule, not the exception. I’ve always wondered why this is. Do difficult cases scare doctors away because of insurance rules? When did doctoring become a game of pass-along? Why are we so stigmatized, even after so many years of suffering? Why isn’t there an accurate diagnostic tool widely available? Why isn’t Chronic Lyme and Congenital Lyme a required part of medical school training?

The CDC calls congenital Lyme “possible but rare.” They wouldn’t dream of saying that if they sat in on even one of our support groups.

We are living evidence that congenital Lyme is not rare. What is rare is finding a doctor willing to see it, and science that can accurately test for and treat it.

Where are the protocols? Who is collecting the needed stats? Why is progress not being made when millions of lives are at stake not just here but around the world? Lyme disease has been discovered in over 80 countries worldwide. It’s a global pandemic.

When COVID hit, science moved mountains in months. Today, no one questions Long Covid. Most people offer sympathy. And yet, forty years after the first report of congenital Lyme, there’s still no public urgency, no meaningful research, no roadmap for families like mine and nothing for me to tell a mother who wants to know how to prevent Lyme disease from spreading to her unborn baby.

People often think certain ailments run in family lines. It’s time to start realizing that infections like Lyme disease can run through a family line, too, causing infections and conditions that could be eradicated with proper treatment.

If you or your child have unexplained illnesses—mental or physical—don’t let anyone tell you it’s “just stress,” or that you, or your child, struggle from a freak “medical mystery.”

Check here for common Lyme symptoms.

Find a Lyme-literate physician here.

Ask your doctor for an IGeneX test.

The best way to manage Lyme is not to get it—or to pass it on in utero—in the first place.

And remember this, too: Lyme disease is a symptom-based diagnosis, not a blood test based diagnosis. If you have enough symptoms, ask for treatment. If you feel better, great; if not, move on. But don’t let Lyme, or its co-infections, steep deeper and deeper into your body. The downstream consequences include links to dementia, MS, ALS, Parkinsons and various cancers. You can not afford to wait, nor can you remain uneducated.

And for god’s sake, stay out of those leaf piles and don’t let your kids play in them, either. Of course, no one wants to be a Debbie Downer, but given what I’ve experienced, my conscience compels me to share this PSA in hopes of sparing others. Because sometimes, what passes with the season takes root in us forever.