I Never Saw the Tick
Hundreds of thousands of people across North America and Europe are infected with Lyme disease every year. No Lyme vaccine is currently available.
On a hot and humid Sunday early in the summer of 2007, I made a seemingly harmless decision to sit down on a park bench in the shade. I was seven months pregnant and my back was getting tired, so it seemed a sensible thing to do. We were in the Englischer Garten, a park in the center of Munich, larger than Central Park and full of grassy fields, centuries-old trees, two beer gardens, a lake, and, apparently, countless numbers of Germany’s most dangerous vector: ticks. As I was sitting in the shade on the bench, watching my husband play with our toddler son at a playground, a mosquito, or so I thought, bit me on the back of my knee. It was more uncomfortable than itchy, and I soon forgot about it. I may even have been bitten earlier in the day, and only noticed when I sat on the bench. They say that tick bites are painless, and while I did not experience pain, I felt something. That evening, the clouds rolled in, and the weather became cold and rainy. For the next week, I lived in sweatpants and forgot entirely about the “mosquito bite” as I developed flu-like symptoms: a fever, extreme body aches, and fatigue. I was barely able to care for our active son, and somehow got through the week. I felt so weak and miserable that I literally could not peel myself off of the couch.
By the following Sunday, the clouds had cleared, the sun shone, and it was warm enough again to wear a dress, which I did. I promptly noticed a “bull’s-eye” rash on the back of my leg, which was neither itchy nor painful. I had never seen such a rash before; I thought it might even be a bruise. When had I bruised myself? Then I remembered the mosquito bite. There was a tiny bump there still, but it wasn’t itchy.
Out of nowhere, I wondered if I could have gotten Lyme disease. I must have read something about the “bull’s-eye” erythema migrans rash that had stuck with me; I never found a tick on me, but something told me to Google Lyme disease. After reading a couple of articles about the signs and symptoms, I was sure that the “mosquito bite” was a tick bite, and that I had contracted Lyme disease.
Technically known as Lyme Borrelliosis, Lyme disease is caused primarily by one of six species of bacteria in the Borrelia genus, transferred to humans by infected ixodes ticks — usually, the nymphs of these ticks. 70 to 80 percent of people infected with the bacteria develop a rash called erythema migrans, but it is harder to spot on darker skin, and can also go undetected if its growth is on a location not visible to the infected individual, such as on the scalp or back. The rash can develop between 2 and 40 days after infection, if at all.
We headed to the emergency room of one hospital, where the doctors believed it was Lyme, but they didn’t have a gynecologist, and they didn’t want to prescribe me anything without having the baby in-utero checked first. So off we went to the OB/GYN department of Munich’s primary children’s hospital. They agreed that all of my symptoms pointed to Lyme Disease, checked the baby, who seemed fine, and wrote down the name and dosage of the antibiotic that was preferred for pregnant women with Lyme (Amoxycillin). They then sent me to the dermatology department, because it was the dermatology department that was tasked with the final diagnosis. It made no sense to me at the time, but in retrospect, I no longer had a fever or body aches and they were trying to diagnose a rash.
Like HIV, m. Tuberculosis, E.coli, and many other viral and bacterial pathogens as well as some cancers, the bacteria that causes Lyme disease is an immune evader; it modifies itself to avoid detection by the immune system. Lyme disease is also a “Great Imitator”, the name given to medical conditions with a wide range of nonspecific symptoms, causing them to be confused with other conditions. Untreated, it makes its way into the fluid in joints, the spine, the brain, and the heart, and can cause arthritis, neurological disorders, and carditis. It can also cause fatigue, headaches, myalgia, swollen lymph nodes, meningitis, chronic inflammatory cardiomyopathy, impaired memory and concentration, and allergic inflammation disorders such as MCAS. And this is only a short summary of a long list of symptoms.
Lyme disease is notoriously difficult to diagnose. Tests are not standardized and are unreliable, which may explain why doctors were unwilling to test me. If an individual’s blood is tested too early, the bacteria won’t show up; it takes about 4 weeks for antibodies to show up in the blood. Tested too late, and results can be inconclusive. The bacteria that causes Lyme disease is also difficult to culture, resulting in further difficulty in diagnosis. In the nearly 40 years since the bacteria that causes Lyme disease was identified, there has been a battle between patients and the medical community to recognize its wide array of symptoms. It isn’t a clear-cut illness, and our medical systems generally don’t do well with elusive diagnoses.
Finally in the dermatology department, I expected a quick look at a rash and a prescription for amoxycillin, but the doctor wrote me off. He didn’t ask me many questions about my symptoms, just looked at the rash and said “it’s not central clearing, I don’t think it’s Lyme Disease”. Erythema migrans rashes are associated with Lyme disease and can be central clearing rashes that look like a “bull’s-eye”. They can also be evenly reddish, or even have blue tones like a bruise. Interestingly, around 80% of cases in Europe have a bull’s eye, pattern, while only 20% of cases in the US seem to. I’d never had such a rash before, and I protested the doctor’s diagnosis, trying to explain my other symptoms. I begged for antibiotics. “It’s probably a spider bite,” he said. When I protested his diagnosis, he asked me if I saw a tick. “I’m 7 months pregnant, I can’t see the back of my knee!” I explained. Frustrated, he told me to return the next day, when the chief of the department would be in. So, after spending all afternoon in hospitals with an 18-month-old, we went home empty-handed, feeling like they thought I was a hysteric who had read the newspaper reports of tick-borne diseases in the mountains and assumed my rash was Lyme.
I did go back the next day, and the chief of the department told me that it looked like a spider bite to her (and gave me some cortisone cream to put on the rash). She said it was too early to take a blood sample and that if I still had the rash a week later, I could come back and get a blood sample taken, but I had lost trust and never returned. I went to a third doctor, a local dermatologist, because the hospital had suggested that final diagnosis should be made by a dermatologist. They thought they were diagnosing a rash. Should I have gone to a general practitioner? Across the spectrum, doctors are limited by their focus. Rheumatologists find arthritis. Allergists find allergies. Dermatologists find topical skin conditions. People who suffer from the symptoms of Lyme disease are often at a loss as to which type of doctor to visit. The third dermatologist agreed with the previous two that my rash was caused by a spider bite, and didn’t ask any question about my symptoms. He just looked at the rash and said, “it’s not central clearing, it’s not typical of Lyme Disease. It’s probably a spider bite.” I gave up. The rash started to fade after 3 weeks. I didn’t have the flu symptoms anymore, but I was still frustrated and worried that I had Lyme and that it would pass on to my child in-utero.
Ticks and tick-borne illnesses are on the rise worldwide due to climate change and changing land-use scenarios (such as deforestation and reforestation). Areas that previously had no or few incidents of Lyme disease have been added to lists of areas with high levels of it. The disease-carrying Asian Longhorn Tick, which originated in East Asia, has now spread to Australia, New Zealand, and the United States. Tick-borne encephalitis (TBE) is endemic from central Europe, through Russia, Mongolia, and China, and has a mortality rate of 1–2%. Fortunately, a vaccine was developed for this dangerous disease in 1937. There is, however, not currently a vaccine to protect us against Lyme disease. There was one in the late 1990s, but it was discontinued in 2002, citing a lack of demand. A new Lyme disease vaccine is currently in phase-II of clinical testing by Valneva, a French company that has recently partnered with Pfizer, which will lead the late-phase development and commercialization of the vaccine.
A few weeks later, I had a regularly scheduled appointment at my OB/GYN. I still had the rash on the back of my leg, which had continued to grow. Wait times at my OB/GYN are usually quite long, because she takes time to listen to each patient; she is the epitome of a great doctor, and is worth the wait. She asked if they had tested me, and when she heard that they hadn’t, she had my blood drawn for testing. Five days later, I received the news from her that my results were strongly positive and that I immediately needed to take a high dose of antibiotics. Relieved, I started treatment. My son was tested for Lyme when he was born, and he tested negative. The saga was over, I thought.
Lyme Disease affects the body in so many ways that I’ll never know whether any subsequent health issues were caused by Lyme. A few years later, I came down with a mysterious liver condition. My doctor suspected a form of hepatitis, but in spite of blood work and an endoscopy, doctors couldn’t figure out what had caused it and called it an “undetected virus”. Years later, I read that the bacteria that cause Lyme disease can cause various forms of liver damage. Further down the road, I was diagnosed with histamine intolerance, which also bears strong links to Lyme disease. In spite of taking antibiotics, some people suffer from Post-Treatment Lyme Disease Syndrome (PTLDS), an auto-immune response triggered by Borellia bacteria, for which there is no treatment. Some individuals previously infected by Borellia bacteria claim to suffer from Chronic Lyme Disease (CLD), a controversial long-term multi-symptom illness attributed to a Lyme disease infection by those who suffer from it, but with no serologic evidence of the disease.
Like Covid-19 and every other epidemic, it is disadvantageous to be infected at the beginning of the outbreak. Lyme wasn’t widespread in Munich when I got it. Medical professionals are not fond of Doctor Google’s diagnoses, and rightly so. They can lead people down the wrong trail to diagnosis and distract them from a more prudent diagnostic path. But sometimes, it’s all we have to educate ourselves so that we can self-advocate. Doctors have years of training and experience to back their diagnoses, but they are not infallible — your knowledge of your own body should not be discounted when you approach the medical community for treatment. I had a gut feeling that what I had was more than a spider bite, and in this case, I was right. Three doctors failed to listen to me, but one did listen, and got me the formal diagnosis and treatment I needed.
Sources:
1. https://ehp.niehs.nih.gov/doi/full/10.1289/EHP4615
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