Tick Tock: CDC Takes Time to Treat Chronic Lyme Disease
Lyme disease is caused by a bacterium that is spread through tick bites. If left untreated, the bacteria can affect a person’s joints, heart and nervous system. photo: Leroy Baptiste
My knees buckled under the weight of my malnourished adolescent body. Cold, dripping sweat met on the tiled floor. I tried my best to ask my parents for help. I didn’t stay conscious long enough to realize they were running up the stairs at the sound of my fall, as if giving orders.
That year was 2018. In my middle-class family in suburban West Hartford, Connecticut, losing consciousness was a daily occurrence. Starting on July 5, 2017, just a few days before my 17th birthday, my legs became completely numb from running.
It wasn’t until I was in my late 20s that I was diagnosed with chronic and neurological Lyme disease – 16 strains to be exact.
I attribute this delay in diagnosis to the Centers for Disease Control and Prevention (CDC) refusal to recognize and legalize chronic Lyme disease. While many Lyme patients recover after taking antibiotics for two to four weeks, others, like me, suffer long-term side effects, and no one knows why. This lack of understanding has made it very difficult for any medical professional to treat me in a way that is specific to Lyme disease.Doctors are often reluctant to admit that Lyme disease may be a diagnosis, and not fully understood Recognize symptoms.
Lyme disease is caused by a bacterium that is spread through tick bites. If left untreated, the bacteria can affect a person’s joints, heart and nervous system.
Lyme disease tests are unreliable and often produce negative results, although patients later discover they carry more than 5, 10 or 16 The strain of bacteria that causes Lyme disease.have No proven “cure” or treatment plan For chronic Lyme disease. The CDC requires strict criteria to diagnose the disease, and patients are often diverted to other autoimmune or psychiatric diagnoses.
During my three-year journey, my case was seen by 20 different doctors in hospitals across the country. I missed 61 days of my senior year of high school and stayed in ongoing care at a local college after graduation. My symptoms include a fever of 103 to 104 degrees, fainting, loss of X nerve function, muscle wasting, arthritis, nausea, migraines, brain fog, inability to walk, loss of appetite and my skin and mouth sores, in a group of people others’ . These symptoms were misdiagnosed as leukemia, Crohn’s disease, generalized anxiety disorder, lupus, diabetes and “hormonal changes.”
A false trial of steroid and antibiotic cycles did more harm than good to my immune system; I was on 24 different medications a day. I wore an electric muscle stimulator under my school uniform in an attempt to generate a neural response, and spent most of my classes throwing up in the bathroom from pain or rejection from the medication.
Lack of care drove me into suicidal depression, common side effects Undiagnosed chronic disease. While my parents put me through the revolving door of a therapist, or even into a support group for people with chronic illnesses, my social circle and medical professionals dismissed my pain as invalid.
During a failed trip at Boston Children’s Hospital, the head of the infectious disease division told my family, “We didn’t see anything worrisome in your tests … nothing seemed wrong. There was nothing we could do about it.” . It’s probably just something your kid is making up in his head.”
But as my symptoms persisted, so did my battles.
In January 2019, my mother got a call that we had been accepted (after submitting various personal references and being added to a waiting list) into a private Lyme facility in Wilton, Connecticut. Based in one of the wealthiest counties in the United States, Dr. Steven Phillips serves clients who are equally wealthy.
I watched my mother, a third-grade public school teacher, play credit card roulette to pay out-of-pocket costs of $800 per visit. Although she didn’t blink, I was overwhelmed with guilt. We, like most American families, don’t have thousands of dollars to pay for the treatments I need every month.For families of most Lyme disease victims, staggering financial burden stands out obstacle respite.As of today, the position of the health insurance industry is that chronic Lyme disease is essentially does not exist. Insurance companies are not obligated to cover treatment for chronic Lyme disease, According to the Infectious Diseases Society of America.
After extensive blood testing, Dr. Phillips finally diagnosed me with Lyme disease, after three years of suffering in silence.
Immediately, I started a round of treatment. For the next three years, a combination of rounds of antibiotics, low-dose naltrexone, a strict diet, antivirals, a robust supplement regimen, and anti-anxiety medications formed my daily cocktail. Therapy, healing and turning to alternatives such as magnetic therapy, acupuncture and Reiki have paved the way for my recovery.
After battling Lyme disease for seven years, I’m now a financial analyst on Wall Street, a master’s student at Columbia, and training for marathons—far from the tiled floors of my childhood bathroom. My parents manage to make ends meet financially and I can manage my ongoing symptoms on a daily basis with the help of private care.
However, I could never get back the years I lost to Lyme. If the medical professionals had fully understood the severity and scope of this disease, I could have been freed from years of suffering.
My situation is not singular.According to the Centers for Disease Control and Prevention, there are Half a million cases Lyme disease in the United States every year. numbers continue to increaseFederal funding remains stagnant, averaging about $60 in research funding per Lyme patient.
Lyme disease must be adequately funded and endorsed by the CDC — to raise awareness, develop more accurate tests, and come up with more affordable, safer treatment options. Only then can we ease the emotional, physical and financial hardships of families afflicted by Lyme disease like mine.
Grace Burns is pursuing a Masters in Sustainability Management at Columbia University and works at S&P Global.
