When the tide turned, I went downhill incredibly fast. No one knew what it was. I scoured the internet all day. I made appointments with doctors. I cried from the pain, even at work. I felt like I was witnessing my own death. I had no power to stop it because I didn’t know what was causing it. Something this monumental surely had a cause, a significant cause, but it remained invisible to me and to every healthcare professional that I sought help from. The pain was earth-shattering. It was the worst case scenario; a nightmare.
I was outside a lot as a child. I loved the natural world and was very curious about it. I learned a lot about the web of life from my parents who have always been avid gardeners and lovers of the natural world. They would point out which insects were beneficial and which were parasitic. From an early age, I witnessed this cyclical web of life in the garden, in the woods, and at the beach. I went on to get a Master of Science degree in field biology and had many more opportunities to witness the physical effects that parasites have on other species. Some of the parasitic relationships that I have witnessed were particularly gruesome and memorable, like the small Braconid wasp that parasitizes the Catalpa Sphinx caterpillar. The wasp lays its eggs inside the caterpillar, which then hatch into larvae that eat the caterpillar from within. There are an infinite number of these parasitic relationships in the natural world, and in fact, it is just a part of being alive. It is a central principle in biology. All organisms, great and small, must carve out a niche for themselves. Why should we be exempt from this?
The example of the caterpillar and the wasp really stuck with me. It seemed particularly cruel. The poor caterpillar. It has no choice but to go on with its life, suffering, until the day when it becomes more parasite than host. We often think that we are separate from the natural web, which can make us blind to what may be causing our health problems. I felt like the caterpillar, and as it turns out, I was exactly right. I was being parasitized by not only one, but three different bacterial infections that I had contracted over the years through tick bites: Borrelia burgdorferi, a spirochete, or spiral-shaped bacteria that is responsible for causing Lyme disease, Bartonella henselae, more commonly known as cat scratch disease, it is extremely common to contract it from a tick bite, and Mycoplasma pnemoniae, the smallest known bacteria of which 4,000 can fit into a single red blood cell. I discovered that these infections are incredibly common, but are they are seldom spoken of or tested for.
There is no end to the amount of disorders, syndromes, diseases, and conditions that we are diagnosed with everyday. If you dig just a little, however, you will be astonished to find that many of these conditions have no known causes. It is very difficult to treat something when the cause is unknown. We have been conditioned to assume that the book of diagnoses are concrete, well-researched, and true. This has not been my experience nor has it been the experiences of many of my friends and family. I was the caterpillar. I looked fine on the outside, but under the surface I was being parasitized. No one could see it. Not a single doctor even mentioned it to me as a possibility. It wasn’t even on the table as an option. It was invisible. Instead, I was labeled with more and more conditions, none of which had a known cause or a successful treatment plan. I went back to my roots; my curiosity for the natural web of life, the convergence of the host and the parasite. I remembered the caterpillar. If not for this, I would have had no choice but to go on with my life, suffering, until the day came when I became more parasite than host.
“Begin at the beginning,” the King said, very gravely, “and go on till you come to the end: then stop.”
― Lewis Carroll, Alice in Wonderland
I grew up in southern, coastal New Jersey in Surf City, a small township on Long Beach Island, a narrow barrier island with ocean to the east and bay to the west. Across the bridge and to the west is the New Jersey Pine Barrens Preserve, over one million acres of preserved pine forests, historic farmlands, and wetlands. It is beautiful and it is also loaded with ticks. My earliest memory of a tick bite was when I was about five years old. It was embedded in my scalp. When I was around the same age, my Mom took me and a couple of friends for a walk in the woods, which was quickly cut short when we realized we were covered with ticks. We ran out of that place.
When I was 8 years old, my Dad got Lyme disease after being bitten by an infected deer tick. This was in 1990, so even less was known about the disease back then. He did not get the classic bulls-eye rash, but he did have the classic combination of symptoms, so his doctor started him on antibiotics to treat the Lyme. He would get out of bed in the morning hunched over, unable to straighten his back. He fingers curled up and he was plagued with extreme lethargy. He lost a lot of weight even though he was already quite thin and his complexion turned very pale, even grayish. He was very ill, but continued to go to work. He was a Union electrician and worked on construction sites. Some of the guys on the job could see how sick he was and how hard it was for him to move his back, so he was able to avoid some of the heavier lifting for a while. After lunch, he would find a quiet spot at the job site and would go to sleep. He was doing his best to survive this thing that had blown into all of our lives like a hurricane. My sister got married that summer, so whenever we look at the pictures from that day, it is an incredibly striking reminder of just how sick he was. He had lost weight from his already lean frame and it appeared as though all of the color had drained from his face. With antibiotics and with some acupuncture, he was able to improve over time. This was his first experience with Lyme, but it wouldn’t be his last.
When I was 16 years old, we moved over the bridge to Barnegat, one of the mainland townships. Tick bites became even more routine here because we would pick them up in the yard or while walking the dog. Our dog got Lyme disease and anaplasma, another tick-borne illness. Her stomach couldn’t handle the full course of antibiotics. She would start vomiting and would not be able to stop. Sometimes, after long walks her legs would become rigid and she would be unable to move. She would fall over and I would rub her legs until it passed. The muscles on one side of her face would do the same, lifting up her cheek and exposing her teeth. At first, we thought it was a seizure, but I could tell by her eyes that she had total awareness of what was happening. There were other times where she would shake and hide under the bed. Her pupils would dilate and she would pant, looking absolutely terrified. We would rush her to the Vet, but they did not have any answers. She had frequent urinary tract infections, was riddled with gastrointestinal issues, and developed arthritis.
Fifteen years after my father’s first run-in with Lyme disease, he was bitten by another infected deer tick, and this time he got the telltale bullseye rash. This gave him an entirely new infection on top of what he almost certainly still had floating around in his system from the first time he had it. No amount of antibiotics can completely erase Borrelia burgdorferi (the spiral-shaped bacteria that causes Lyme disease) from the body; some will always linger. The antibiotics just beat them back to a manageable level (if you’re lucky), so that your immune system can keep them in check. Times of particular stress, car accidents, hormonal changes, exposure to mold, and tick bites are just a few known triggers that can reactivate an dormant infection. This time my father went to see a doctor who was known to specialize in the treatment of Lyme disease. She knew to test him for other tick-borne infections, which are widely ignored despite the fact that they produce symptoms similar to Lyme and are just as common. His bloodwork showed that he also had babesiosis, a malaria-like infection caused by Babesia microti. He battled severe depression that year. He eventually improved, but he had to take a longer course of antibiotics this time as well as multiple types of antibiotics to combat not only the Lyme infection, but also the babesiosis. Seven years later, in 2012, he got a tick bite with a bulls-eye rash that was so large that it covered his entire back. It was the second largest bullseye rash the Lyme specialist had ever seen. Lyme again.
What I didn’t know was that I also had Lyme. I had been getting tick bites all of my life. It’s not that I wasn’t afraid of Lyme, but I just assumed that I would know if I had it. I never knew that it could manifest differently depending on the individual, that chronic Lyme and acute Lyme present differently, that I could have it without knowing for such a long time. I never had a bulls-eye rash. I didn’t think to be tested for Lyme. I’m sure that I got sick after tick bites, but I never made the connection. I can remember some horrendous summertime flues that I have had throughout my life. One landed me in the ER. I thought I had swine flu. I thought I knew what Lyme looked like. It was all around me. But like so many others, I didn’t know. I was accustomed to living with back pain, migraines, panic attacks, gastrointestinal issues, depression, and severe menstrual cramps that landed me in the ER on two separate occasions. Until my pain got so bad that I could no longer eat or sleep, I never sought help for it. It always seemed to subside if I gave it enough time. As it turns out, what I didn’t know was hurting me far more than I could have imagined. And so it was that I landed in the chronic Lyme boat along with hundreds of thousands of others.
When I was about three months into treatment, I convinced my Mom to get the same exhaustive testing that I had for Lyme. She had always pushed me to get tested for Lyme and I never listened to her. From what I knew about Lyme, my symptoms didn’t match the description at all, nor did hers. At 68 years old, my Mom tested positive for Lyme, bartonella, babesia, and mycoplasma. She had lived a lifetime with various chronic pain issues, including arthritis. She had also lived most of her 68 years with depression, severe anxiety, and heart issues. She had been tested for Lyme on several occasions at her own request through our family doctor. She always tested negative according to the standardized, two-tier, insurance-covered test recommended by the Center for Disease Control (CDC); the elisa test first, and then the western blot. It is estimated that this two-tier system misses around 50% of Lyme cases (LymeDisease.org). You might as well save yourself some money and flip a coin. Despite their high level of inaccuracy, these two tests are the only lab tests covered by insurance. When people are told by their doctors that they have tested negative for Lyme disease, they believe them. Most people have no way of knowing that these results are based on testing that is both highly flawed and highly inaccurate. In more recent years, when my Mom discussed her interest in further diagnostic testing for Lyme disease along with other common co-occurring infections, her doctor assured her that this was totally unnecessary. He was completely perplexed as to why she would even request such a thing. It was never even the slightest blip on his radar screen.