Tick Tock: CDC takes its time treating chronic Lyme disease
My knees gave way under the weight of my malnourished adolescent carcass. The cold, dripping sweat met its match on the tiled floor. Every ounce of strength I had cried out to my parents for help. I didn’t stay conscious long enough to realize that they ran up the stairs at the sound of me falling, as if on command.
It was 2018. Fainting was a daily occurrence in my middle-class home in suburban West Hartford, Connecticut. Life had been like this since July 5, 2017, a few days before my 17th birthday, when my legs went completely numb during a run.
It wasn’t until I was almost 20 years old that I was diagnosed with chronic, neurological Lyme disease – 16 strains, to be precise.
I blame this diagnostic delay on the refusal of the Centers for Disease Control and Prevention (CDC) to recognize and legitimize chronic Lyme disease. While many Lyme disease patients can recover after two to four weeks of antibiotics, others, like me, suffer long-term side effects, and no one knows why. This lack of understanding makes it difficult for any medical professional to treat me in a Lyme-specific way. Doctors are often reluctant to recognize Lyme as a possible diagnosis and are not sufficiently informed to identify symptoms.
Lyme disease is caused by bacteria that is spread by tick bites. If left untreated, the bacteria can affect a person’s joints, heart, and nervous system.
Lyme disease screening tests are unreliable and often produce negative results despite patients later finding out they carry more than 5, 10 or 16 strains of bacteria responsible for Lyme disease. There is no proven “cure” or treatment plan for chronic Lyme disease. Rigorous criteria are required by the CDC to be diagnosed with the disease, and patients are often passed on to other autoimmune or psychiatric diagnoses.
During my three-year journey, 20 different doctors in hospitals across the country saw my case. I missed 61 days of my senior year of high school and stayed at a local college after graduation for consistent care. My symptoms included fevers of 103-104 degrees, fainting, loss of nerve function in X, muscle wasting, arthritis, nausea, migraines, brain fog, inability to walk, loss of appetite and sores on the skin and mouth, in a host of others. These symptoms have been misdiagnosed as leukemia, Crohn’s disease, generalized anxiety disorder, lupus, diabetes and “hormonal changes”.
Misguided attempts at cycles of steroids and antibiotics have done more harm to my immune system than good; I was taking 24 different medications every day. I wore an electrical muscle stimulator under my school clothes in an attempt to generate nerve responses, and left most classes I attended to vomit in the bathroom, either from pain or rejection of medication .
The lack of care made me fall into a suicidal depression, a common side effect undiagnosed chronic diseases. While my parents put me through a revolving door of therapists and even to join a support group for chronic disease patients, my social circles and medical professionals invalidated my pain.
On a victorious trip to Boston Children’s Hospital, the head of the infectious disease unit told my family, “We don’t see anything alarming in your tests… have nothing wrong. We can’t do anything for you. It may be something your child has made up in their head.
But as my symptoms persisted, so did my fight.
In January 2019, my mom received a call that we had been accepted (after submitting various personal references and joining a waiting list) to a private Lyme facility in Wilton, Connecticut. Dr. Steven Phillips’ office was located in one of the wealthiest counties in the United States and served an equally wealthy clientele.
I watched my mom, a third-grade public school teacher, play roulette with a credit card to pay the $800 fee for each visit. While she didn’t blink, I was flooded with guilt. Like most American families, we didn’t have the thousands of dollars to pay for the treatments I needed every month. For most families of Lyme victims, the staggering financial burden is a major factor barrier respite. To date, the position of the health insurance industry is that chronic Lyme disease is essentially does not exist. Insurance companies are not obligated to cover the treatment of chronic Lyme disease, according to the Infectious Diseases Society of America.
Through extensive blood tests, Dr. Phillips finally diagnosed me with Lyme disease, after suffering in silence for three years.
Immediately I started treatment cycles. An amalgamation of rounds of antibiotics, low dose naltrexone, a strict diet, antivirals, a robust supplement regimen, and anti-anxiety medications, among others, was my daily cocktail for the three years. following. Treatment, therapy and the use of alternative methods like magnetic therapy, acupuncture and Reiki paved the way for my recovery.
After seven years of battling Lyme disease, I’m now a financial analyst on Wall Street, a master’s student at Columbia University, and training for a marathon — a far cry from the tiled bathroom floors of my childhood. My parents have managed to stay financially afloat and I can manage my persistent symptoms on a day-to-day basis with private care.
However, I will never get back the years I lost to Lyme. If medical professionals had been properly informed of the severity and extent of the disease, I could have been relieved of years of suffering.
My case is not unique. According to the CDC, there are half a million cases of Lyme disease each year in the United States. The numbers continue to rise and federal funding remains stagnant, with an average of about $60 in research funding spent for each Lyme patient.
Lyme disease needs to receive sufficient funding and recognition from the CDC – to raise awareness, develop more accurate tests, and provide more affordable and less haphazard treatment options. Only then can we alleviate the emotional, physical, and economic hardship imposed on families with Lyme like mine.
Grace Burns earned her Masters in Sustainability Management from Columbia University and worked at S&P Global.