This story originally appears in the November 2017 issue of Jerk Magazine. It was written by Carly Fokos and photography is by AJ Krappman
Teddi Landis stares up at the ceiling, her eyes wide, as she recalls the first moment she was introduced to the disease that would alter her life.
Landis has lived in Upstate New York for more than 50 years, and she has just finished telling me how she went to a homeopathic doctor in her hometown, Saratoga Springs, shortly after she began noticing odd sensations of discomfort in her ears, armpits, and feet. Initially, she credited the symptoms to lack of sleep, but once rashy red circles appeared all over her body, she began to think it was something more serious—a hunch that proved correct.
She looks back at me and clears her throat. “The doctor looked at me and said, ‘I think you have Lyme disease.’ And I said ‘What? No—I can’t have Lyme disease,’ and at first I completely dismissed it,” Landis says. The tendency to think of ourselves as invincible is human nature—we deem ourselves immune. But the somewhat unfortunate reality is: invincibility is a falsity and this is what Landis was going to have to come to terms with.
New York State Senator John DeFrancisco held a press conference this past July to inform the public of the growing Lyme disease epidemic in upstate New York. The conference aimed to raise awareness of the disease and its symptoms as well as encourage the community to take preventative measures. Lyme disease is an infection that, when contracted, can affect a number of different organs—it has been dubbed “The Great Imitator” due to its ability to mimic many other deteriorating diseases.
“The thing about Lyme disease is that anyone can get it. Kids, adults, and patients as old as they come. If you’re outside and you get bit by a tick, you can be infected,” Dr. Kristopher Paolino, infectious disease physician and clinical researcher at SUNY Upstate Medical University, says.
The bacteria that causes Lyme disease can be transmitted to humans through the bite of a deer tick. New York is one of three states that report the highest number of Lyme disease cases in the country, according to the most recent data from the Centers for Disease Control. This is a particular problem for rural Upstate, where the risk of exposure to ticks carrying the bacteria is higher. The result is a growing influx of people going to the emergency room with symptoms that are consistent with Lyme disease.
Paolino describes the range of Lyme disease symptoms as a spectrum. On the lower end of the spectrum there is the classic “bulls-eye” rash which rightfully earns its nickname from its ring-like appearance, flu-like symptoms, fevers, and fatigue. If Lyme disease goes untreated, symptoms can intensify. Further up on the spectrum, there is risk of joint swelling, persisting headaches, neck pain, neurological issues, Lyme meningitis, heart complications, and electrical abnormalities, among others.
Colleen Cassidy, a senior at Syracuse University, contracted Lyme disease following her freshman year while working at an outdoor summer camp. She recalls noticing a rash, but it was not the typical bulls-eye connected with Lyme disease. She ignored it until she woke up one morning with severe neck pain inhibiting her from moving her head. Soon after, her face began to swell. Upon going to the emergency room, she was tested for Lyme disease and given antibiotics almost immediately. Cassidy says that although the antibiotics alleviated her symptoms, they made her nauseous, which impeded her ability to work while she was recovering.
Paolino estimates that only 20-30 percent of people who are diagnosed with Lyme disease actually get the noticeable bulls-eye rash. The absence of this rather obvious indication of Lyme leads to many cases being falsely diagnosed or left undiagnosed. This could be especially relevant within a college climate where we tend to brush off physical symptoms as insignificant and, quite literally, push through the pain to keep up with our daily responsibilities.
Meredith Harmison, a Syracuse University sophomore, was diagnosed with Lyme disease as a child. At the time, she was living in an extremely rural town and spent much of her time outdoors. One day, she woke up with an extremely swollen knee for which she had no explanation—no bruise, no fall, no reason for it be swollen. Upon going to the emergency room, a blood test confirmed that Harmison had Lyme disease. She received medication intravenously through a PICC line for three months and underwent two surgeries on her knee to eradicate the joint swelling, as well as physical therapy. Before the swelling of her joints, Harmison had no rash or other symptoms at all.
“The doctors think I had Lyme for months before I was diagnosed,” Harmison says. “That’s why it got so bad, how the symptoms got so serious. I just didn’t know it.” Soon after her own recovery, Harmison’s younger sister contracted Lyme disease as well. Unlike Meredith, the bulls-eye rash was easily identifiable and treatment was quick and effective.
If caught early, Lyme disease can be treated relatively easily with antibiotics over the course of a few days or weeks. Once treated effectively, the symptoms go away and the infection is considered dormant. If treated quickly, there is low risk of experiencing complications in the future or the relapse of any symptoms. But, chronic Lyme disease symptoms can develop over time in some cases, especially those who received treatment after having it for a long time. The unpredictability and inconsistency of symptoms is part of what makes Lyme disease so scary. It can be easily misattributed because of its impacts on a variety of organs. It can be hard to diagnose; the bacteria that causes Lyme disease is not as abundant in comparison to other bacteria.
Due to Lyme disease’s ambiguous progression and limited testing methods, many cases of Lyme go undiagnosed. “It grows slowly and hides,” says Paolino. False negatives are not uncommon; In many cases, if you test negative for Lyme despite the presence of deteriorating symptoms, insurance does not cover the antibiotics necessary for recovery. This puts the financial burden of treatment in the hands of the patient. After attending a support group for those affected by Lyme disease, Landis witnessed these tragedies in real life. “There were grown men crying about how Lyme disease had devastated their entire lives, and that there was nothing they could do because they had continuously tested negative, despite symptoms,” Landis says. “It was then when I understood what the doctors had meant when they said I was lucky to have tested positive.”
Landis experienced a recurrent episode two years after her first diagnosis. She received another three months of treatment, which halted the main symptoms, leaving Landis to cope with the residual effects on her own. “You’re not going to eradicate it—you just want to control it,” Landis explained. “You have to learn to live with it.”
Since undergoing treatment, neither Harmison nor Cassidy have experienced any relapse or chronic symptoms of Lyme disease. Although, Harmison says that her doctors have warned her that she is at risk for early arthritis due to the impact on her joints from the swelling and surgeries. Long lasting effects of Lyme disease of this nature are not unusual.
Even after two rounds of antibiotics, Landis frequently gets headaches, which was uncharacteristic of her prior to contracting Lyme. Her feet continue to tingle and feel strange—almost numb. She says that whenever she is outside, Lyme disease is always on her mind. “Oh man, there’s just ticks everywhere! I used to go barefoot all the time while I gardened. Not anymore. Whenever I’m around grass I’m honestly just a little scared,” Landis says.
As for the future, Landis is one of many who have turned to homeopathic treatments for relief when her symptoms flare up. She says she makes herbal pills and tinctures using various ingredients including cat’s claws and dandelion. According to Landis, these natural remedies help alleviate discomfort when they complement a healthy diet and lots of sleep. Homeopathic treatments appeal to many people with chronic symptoms of Lyme disease because there are few FDA approved products that are effective long term, Paolino explains. “When these symptoms come and don’t go away, people get desperate, especially when nobody knows how to treat the pain symptoms effectively.”
There have been no randomized control tests to test herbal concoctions to see if they are truly effective. Patients can end up paying hundreds of their own dollars for non-FDA approved pain treatments that may or may not even work. “It really is unfortunate,” Dr. Paolino comments on the lack of existing literature. He says he would like to eventually receive grants to conduct randomized control trials of this nature, such as one regarding the effects of medical marijuana on Lyme-related pain.
Until more research is done, those who have been affected by Lyme disease will continue to cope. Those who haven’t should continue to be cautious, and everybody should make an effort to be informed and raise awareness. Lyme disease isn’t going anywhere, but with the right steps, we can work toward managing it better.