“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.