Lyme Disease is an Epidemic…Without a Real Name

I almost didn’t graduate elementary school.

This wasn’t due to lack of academic prowess, nor a result of any behavioral missteps. In fact, top of my class, with straight A’s and gold stars on every report card, I was the ideal student: Quiet. Calm. Respectful. Attentive. Smart. Curious.

The reason I almost failed out of elementary school in 1989 was due to a microscopic pathogen. At the age of 10, halfway through Grade 5, I contracted mononucleosis (aka “mono”), seemingly out of nowhere. It knocked me out, and down, for months. Unable to stand up, let alone breathe on anyone else, I was quarantined home from school until I recovered.

Unfortunately, I did not bounce back expediently. Days on my couch turned into weeks; weeks turned into months. My Victorian fragility kept me flushed, enervated, and bed-ridden, surrounded by textbooks, notebooks, and homework assignments delivered daily on my doorstep by my best friend Christina. She wasn’t allowed to enter my domicile, lest the same infectious fate befall her as well.

Curiously, no one else in my school nor my home had been sick with mono. Just me. The doctor was unsure how I managed to catch “the kissing disease” with no known carriers in my midst, also considering the physical barrier I staunchly guarded between myself and the external world. I was not a glass licker, crayon sucker, nor Ring Pop sharer. And the thought of foreign fluids freaked me out so sufficiently that I was the very last kid who would ever kiss another classmate, unlike my friend Jeff who ran around the playground smooching his paramours on the swing set.

When the doctor determined I’d likely survived the infectious stage, but nonetheless remained too weak to attend classes, my courageous teacher Mr. Stein entered my house at his own peril, spending hours a day after school tutoring me. His focused care as an educator remains the primary reason why I found myself seated in the auditorium of Prospect Hill Elementary School in Pelham NY that Spring, graduating alongside my otherwise much healthier classmates.

That was thirty years ago.

I am now 41.

A few days ago, I went to the doctor (again). This is nothing new, and over the last three decades, I’ve become accustomed to (though nonetheless mournful about) using my free time (and most of my money) for medical appointments, lab tests, and treatments.

I have a bruise on my arm (again) from a blood draw. From veins too weak to handle a needle. A body too dehydrated to withstand more than two vials drawn at once. My peculiar skin rashes and lesions point toward some sort of unknown vascular disease. As the doctor explained, “It can be very challenging to diagnose these diseases.” I can no longer wear most of my shoes. Some days it’s too painful to walk, my toes are red and inflamed, the bottom of my feet on fire, as are my tears, when I finally unmask my socially acceptable smile and break down crying. My nails are brittle. My complexion is pale. My hair has lost its thickness and luster.

And those are just the outward signs …the physical proof, the obvious signifiers, the noticeable outliers that something is in fact wrong. You cannot see the rest of it, the worst of it… the slowly progressing, systemic neurological/immunological breakdown that’s impacted every cell, every blood vessel, and every energetic particle that is me, since I was a child.

I was 40 years old when I gave up on trying to rationalize my illness.

I was 38 years old when I declared bankruptcy, $200,000 in debt from medical expenses over the course of 20 years. I was gainfully employed and had health insurance that entire time.

I was 36 years old when my body finally collapsed at the micro-cellular level, rendering me debilitated by environmental toxins, forcing me to leave my home and my life in New York City.

I was 34 years old when a doctor first diagnosed me with Lyme Disease, after 25 years of recurring bacterial and viral infections, rashes, joint pains, headaches, migraines, stomach disruptions, spinal pain, nausea, kidney infections, tremors, heart palpitations, vertigo, numbness, tingling, and a whole host of other symptoms no one wants to read.

I was 33 years old when I had my fifth brain MRI.

I was 31 years old when I was diagnosed with Celiac Disease.

I was 25 years old when I was diagnosed with Hypothyroidism.

I was 23 years old when I was diagnosed with a perplexing anemia that still confounds doctors to this day.

I was 22 years old when I first started having neurological symptoms.

I was 20 years old when I had an unrelenting viral infection that lasted an entire year.

I was 17 years old when I developed a perpetual cough and recurrent bronchitis.

I was 15 years old when I took antibiotics for the umpteenth strep infection.

I was 11 years old when I got pneumonia.

I was 10 years old when I contracted mono.

And I was 9 years old when I was bitten by a tick that carried Lyme Disease.

“Alison, when was the last time you remember feeling well?” asked the compassionate physician circa 2015.

“When I was 8.”

Healthy at age 8. A tick bite at age 9. A subsequent lifetime of spiraling autoimmunity, persistent infections, and progressive illness.

This is not a coincidence.

And I am far from the only one with this regressive timeline.

I’ve read the books, the articles, the blogs, the social posts, the medical journals, the research, the fundraising pages (hell, I even had my own a few years ago) about Lyme Disease — its history, origins, derivations, pathologies, treatments, conspiracy theories, and personal stories. I’ve tweeted at the celebrities who have publicly vocalized their struggles with Lyme — Debbie Gibson, Avril Lavigne, Amy Tan, and recently Justin Bieber (ok, I didn’t actually tweet at him…). I’ve gone to medical lectures, health conferences, support groups. I’ve connected with fellow classmates, colleagues, and new friends who share similar stories and Lyme diagnoses. I’ve educated myself on this disease and its progression, despite the Lyme Wars faction that staunchly defends that Lyme can be eradicated with a singular round of antibiotics.

And yet, in all of that, something still doesn’t add up.

Allow me to return to yet another school anecdote….

The SAT was my testing nemesis. As a straight-A, over-achieving, hyper-competitive “I must get into Harvard” academic nerd, you’d imagine my SAT scores to be commensurate with my transcript. But, alas. Not as such.

This isn’t to say that I sucked at the SAT. But my “Slightly Above Average” scores did not impress the Ivy powers that be. And while stacks of note cards replete with erudite vocabulary words followed me from yearbook meetings to dance class to skating club to bed… that dastardly analogy section always tricked me up.

____ is to ____

as

____ is to ____

For example:

PALTRY : SIGNIFICANCE ::

A. redundant : discussion
B. austere : landscape
C. opulent : wealth
D. oblique : familiarity
E. banal : originality

(According to the website where I borrowed this analogy, the answer is E. Hell if I would have figured that out on my own…)

But I’ve got a doozy of an analogy for you. If you solve this one, please fast-track yourself to a PhD at Harvard Medical School and a Nobel Prize in Physiology.

HIV is to AIDS

as

Lyme is to _____.

What?

As Lyme is to what?

Where’s the missing word? Where’s the answer?

Ah ha. You see. That’s the problem. There is nothing to fill in that blank. There is no answer. There is no word. The analogy is incomplete. And unsolvable. At least, for now.

It’s not like there hasn’t been some sort of frustrated kerfuffle by the medical community to fill in that blank over the years. In some circles, it’s called “Chronic Lyme Disease” or “Persistent Lyme Disease.” In others, it’s termed “Post Treatment Lyme Disease Syndrome” (or PTLDS, which to me is an ironic nod to the PTSD a person inevitably experiences from this misnomer of a disease). Others deem it “Late Stage Lyme Disease.” But none of this truly hits the center of the bulls eye rash that totally does NOT occur all the time for Lyme patients, even though that’s pretty much one of the few screening factors for a clinical diagnosis.

Besides, none of this properly acknowledges the epidemic at hand. An epidemic with no name. An epidemic that remains largely unrecognized. An epidemic not so different from AIDS. After all, HIV (human immunodeficiency virus) is a virus that attacks the cells that help the body fight infection, leaving a person immunocompromised. If left untreated, HIV can lead to the disease AIDS (acquired immunodeficiency syndrome), which is, of course, the late stage of HIV infection that occurs when the body’s immune system is badly damaged because of the virus.

Sound familiar?

It took years, if not questionably decades, for researchers and doctors to discover the link between HIV and AIDS. The 1980’s ushered in a flurry of research to understand what was sickening and killing a generation of men (and women) who were taken down by “opportunistic infections” such as pneumonia and rare cancers. Misunderstanding, finger-pointing, and social fears ran amok for years as the medical community initially concluded this illness was confined solely to sexually active male homosexuals, hence the early term “GRID” (gay-related immune deficiency). Mired in political, economic, and cultural battles, thousands of people died, several scientists and advocates were marginalized, and public health organizations were scrambling.

Obviously, now we know that HIV/AIDS is not just a disease that befalls the gay male community. But such an assumption is like the common misconception that you’re only at risk for Lyme if you walk bare-skinned through the deer-populated woods. I never went hiking. I never hugged a deer. I never rolled around in the grass. But I was bitten by a tick at the age of 9. My mother found it engorged on my back just below my right shoulder blade, after I had been visiting my aunt’s house in suburban Long Island for the weekend. I didn’t even step foot in her backyard. But she had a dog. And dogs carry ticks inside. And those ticks can latch on to a human’s body. And even if you take the standard 2–3 week antibiotic protocol immediately following exposure, the elusive bacteria in those ticks can make a human sick… for a few weeks, months, years… sometimes even for an entire lifetime. But no one really knew that in 1987 when my prescient mom rushed me to the ER for a tick bite. And here in 2020, very few practitioners know what to do even now.

We do know some things. At its most basic level, Lyme disease is a bacterial infection, caused by the spiral-shaped bacterium, or spirochete, Borrelia burgdorferi, and it is transmitted to humans primarily from the bite of a infected blacklegged deer tick.

According to the Lyme and Tick Born Diseases Research Center at Columbia University, “the spirochete that causes Lyme disease might stay localized to the skin or it might rapidly spread throughout the body after the initial tick bite. The “disease” is caused by the inflammatory response to the spirochete.” It may stay lodged in the skin, causing that classic red bulls eye rash. It may continue on, traveling into the blood stream and other organs. It can cause arthritis if embedded in the joints. If it moves to the heart, it can cause cardiac conditions, which can in fact be fatal. And if it winds up in the peripheral or central nervous system, it can cause meningitis, confusion, memory loss, burning or stabbing pains, shooting pains, numbness/tingling, and/or weakness (and to that fun neurological category, I can attest truth).

To add insult to injury, Lyme usually isn’t “just” Lyme, but rather a whole host of other co-infections that come along for the ride. Ticks and other vectors (i.e. fleas, mosquitoes) carry many bacteria, viruses, fungi, and protozoans, and can transmit them to a human in a single bite. So really, someone who has Lyme disease, usually has one or more co-infectious diseases, including (but not limited to): Anaplasmosis, Babesiosis, Bartonella, Borrelia, Ehrlichiosis, and Mycoplasma. From my own experience, I can tell you, Bartonella is a bitch.

Most of us think about infections like we do the common cold or even the flu. Whether bacterial or viral, we should be able to recover from an infection, right? The bacteria or virus finds its way into your body. You take some antibiotics if it’s bacterial; and if it’s viral, you rest with chicken broth and water. You get some nasty symptoms for 7–10 days, your immune system kicks in, and almost like magic, you emerge back into the world fresh and new.

For some people who contract the Lyme-related bacterial infection, this is indeed what happens. They heal. Their immune systems recover and they move on to healthier and happier lives.

For many other people, such as myself, nothing can be farther from the truth. According to the Johns Hopkins Lyme Disease Research Center, “The estimated cumulative number of Americans struggling with chronic symptoms relating to Lyme disease may be as high as 1.9 million in 2020.”

So what happens here is not so dissimilar to the viral progression that leads to AIDS. The infection gets into your body, into your blood stream, your organs, into your brain and nervous system. It breaks down your immune system. You remain sick. You get progressively more sick. You become immunocompromised. You cannot recover from opportunistic infections. You become sensitive to external toxins that put additional stressors on your system. You develop co-morbidity with other diseases and conditions. So then what emerges, at its “late stage” is no longer “just” a bacterial infection, but a full-blown, acquired autoimmune disease in itself. Without a name.

How can you treat something that doesn’t have a name?

How can you cope with something that doesn’t have a name?

How can you heal from something that doesn’t have a name?

How can you validate the existence of a disease (and the person living with it…and dying from it…) if that disease doesn’t have a name?

A friend of mine with her own recently diagnosed, potentially debilitating, rare disease (one with a name, albeit an esoteric one) expressed to me that she often experiences a unique form of writer’s block when trying to put pen to paper about her illness. She runs a blog, but whenever she posts about her illness, she worries the outside perception will be that she’s “complaining” or that she’s seeking “sympathy.”

I have to say, given my own writing and blogging on chronic illness, I’ve never thought about this before… until now. Because I too have been caught in a perpetual state of writer’s block. Unwilling or unwanting to voice the inner monologue that leaves me restless day and night. All the words, the thoughts, the images that I want or need to express so my mind can be at peace. But they get stuck. For the last few months, it’s been easier to gaze numbingly at episode after episode of Sex & the City for the hundredth time than face the truth of the words that even I don’t want to hear. So why would anyone else want to hear them?

“Write about your experience with chronic illness, Alison. You’re such a good writer. Keep writing.”

This is what my blogger friend said to me the other night. And it’s what so many others have articulated to me over time. But stuck in my own writerly avoidance… in the immortal words of Carrie Bradshaw, “I couldn’t help but wonder…” why bother?

Do any of these words matter? Will they change anything? Will they help others feel less alone? Spur on medical research? Will it inspire others to use their own voices? To ease pain? To release fear? Will it change the world? Will it change me? Will it help me heal, cope, move forward, grieve?

What if it doesn’t?

What if I’m just wasting my time? And worse, what if I’m wasting everyone else’s time?

Because at the end of this, I still feel unbearably sad, alone, panicked, sick, and heartbroken on yet another night that’s all too quiet, and removed, and disconnected from a life and a self and a body that I believe I have… but that I lost… somewhere, as a child. Because why? Because of a tick bite. Because of a bacteria. And because of a progressive disease, wrapped in a global public health epidemic, that doesn’t even have a name.

It seems too surreal to be real. It seems too impossible to be possible. And yet, the fictional aura of my very nonfiction life is in fact all true.

So maybe writing this only serves one purpose. If I can’t finish the analogy, maybe one day, someone else can.