Tick Tock: CDC Takes Its Time Treating Chronic Lyme Disease
My knees buckled beneath the load of my malnourished adolescent frame. Cold, dripping sweat met its match on the tile floor. Every ounce of strength I had cried out to my parents for help. I didn’t stay conscious long enough to understand they raced up the steps on the sound of my fall, as if on command.
The 12 months was 2018. Losing consciousness was among the many on a regular basis occurrences in my middle-class household in suburban West Hartford, Connecticut. Life had been this fashion since July 5, 2017, just days before my seventeenth birthday, when my legs went fully numb during a run.
Not until I used to be almost 20 years old was I diagnosed with chronic and neurological Lyme disease — 16 strains of it, to be precise.
I blame this delay in diagnosis on the Centers for Disease Control and Prevention (CDC)’s refusal to acknowledge and legitimize chronic Lyme disease. Whereas many patients with Lyme disease can get well after two to 4 weeks of antibiotics, others, like me, suffer long-term unwanted side effects, and nobody knows why. This lack of information makes it difficult for any medical skilled to treat me in a Lyme-specific manner. Doctors are sometimes reluctant to acknowledge Lyme as a possible diagnosis, and are not sufficiently informed to discover symptoms.
Lyme disease is attributable to a bacteria that’s spread through tick bites. If left untreated, the bacteria can affect an individual’s joints, heart, and nervous system.
Tests for Lyme disease are unreliable, often producing negative results despite patients later discovering they carry upwards of 5, 10, or 16 strains of Lyme-causing bacteria. There’s no proven “cure” or treatment plan for chronic Lyme disease. Stringent criteria are required by the CDC to be diagnosed with the disease, and patients are sometimes passed off 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 12 months of highschool and stayed at an area college upon graduation to accommodate consistent care. My symptoms included fevers of 103 to 104 degrees, fainting, lack of nerve function in X, muscle atrophy, arthritis, nausea, migraines, brain fog, an inability to walk, appetite loss, and sores over my skin and mouth, amongst a bunch of others. These symptoms were misdiagnosed as leukemia, Crohn’s disease, generalized anxiety disorder, lupus, diabetes, and “hormonal changes.”
Misguided attempts of cycles of steroids and antibiotics did more harm than good to my immune system; I used to be taking 24 different medications each day. I wore an electrical muscle stimulator under my school clothes in an try to generate nerve responses, and would go away most classes I attended to throw up in the toilet, either from pain or medication rejection.
The dearth of care caused me to fall into suicidal depression, a standard side effect of undiagnosed chronic illnesses. While my parents schlepped me through a revolving door of therapists and even to affix a support group for patients of chronic illness, my social circles and medical professionals alike invalidated my pain.
During a defeating trip to Boston Children’s Hospital, the top of the infectious disease unit told my family, “We don’t see anything alarming in your testing…There appears to be nothing fallacious. There’s nothing we will do for you. This might just be something your child has made up in her head.”
But as my symptoms persevered, so did my fight.
In January 2019, my mother received a call that we had been accepted (after submitting various personal references and joining a waiting list) into a non-public Lyme facility in Wilton, Connecticut. Dr. Steven Phillips’ office sat in one in all the wealthiest counties in the US and serviced equally wealthy clientele.
I watched my mother, a third-grade public school teacher, play bank card roulette to pay the $800 out-of-pocket fee for every visit. While she didn’t bat an eye fixed, I used to be inundated with guilt. We, like most American families, didn’t have the 1000’s of dollars to pay for treatments that I needed every month. For many families of Lyme victims, the staggering financial burden is a preeminent barrier to respite. As of today, it’s the stance of the medical insurance industry that chronic Lyme disease essentially doesn’t exist. Insurance firms aren’t obligated to cover the treatment of chronic Lyme disease, in line with the Infectious Diseases Society of America.
With extensive blood testing, Dr. Phillips finally diagnosed me with Lyme disease, after I had suffered in silence for 3 years.
Immediately, I started rounds of treatment. An amalgamation of antibiotic rounds, low-dose naltrexone, a strict weight loss plan, anti-virals, a strong complement regimen, and anti-anxiety medication, amongst others, comprised my every day cocktail for the next three years. Treatment, therapy, and turning to alternative methods like magnet therapy, acupuncture, and Reiki paved my strategy to recovery.
After seven years of fighting Lyme disease, I’m now a financial analyst on Wall Street, a master’s student at Columbia University, and training for a marathon — removed from the tiled floors of my childhood bathroom. My parents have managed to remain financially afloat, and I can manage my persistent symptoms on a day-to-day basis with assistance from privatized care.
Nevertheless, I won’t ever get back the years that I lost to Lyme. If medical professionals were adequately informed of the gravity and scope of the disease, I might have been alleviated from years of suffering.
My case shouldn’t be singular. Based on the CDC, there are half 1,000,000 cases of Lyme disease annually in the US. Numbers proceed to extend, and federal funding stays stagnant, with a median of about $60 of research funding being spent on each Lyme patient.
Lyme disease must receive sufficient funding and recognition by the CDC — to lift awareness, develop more accurate tests, and provide you with more cost-effective and fewer haphazard treatment options. Only then can we alleviate the emotional, physical, and economic hardship placed on Lyme-afflicted families like mine.
Grace Burns is earning her master’s degree in Sustainability Management at Columbia University and works at S&P Global.