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Tick Tock: CDC Takes Its Time Treating Chronic Lyme Disease

a tick on a stalk of grass
Lyme disease is caused by a bacteria that’s 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 beneath the weight 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 realize they raced up the stairs at the sound of my fall, as if on command.

The year was 2018. Losing consciousness was among the everyday occurrences in my middle-class household in suburban West Hartford, Connecticut. Life had been this way since July 5, 2017, just days before my 17th birthday, when my legs went fully numb during a run.

Not until I was 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 recognize and legitimize chronic Lyme disease. Whereas many patients with Lyme disease 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 manner. Doctors are often reluctant to acknowledge Lyme as a possible diagnosis, and are not sufficiently informed to identify symptoms.

Lyme disease is caused by a bacteria that’s spread through tick bites. If left untreated, the bacteria can affect a person’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 is 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 often 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 year of high school and stayed at a local college upon graduation to accommodate consistent care. My symptoms included fevers of 103 to 104 degrees, fainting, loss 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, among a host 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 was taking 24 different medications every single day. I wore an electric muscle stimulator under my school clothes in an attempt to generate nerve responses, and would leave most classes I attended to throw up in the bathroom, either from pain or medication rejection.

The lack of care caused me to fall into suicidal depression, a common side effect of undiagnosed chronic illnesses. While my parents schlepped me through a revolving door of therapists and even to join 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 head of the infectious disease unit told my family, “We don’t see anything alarming in your testing…There seems to be nothing wrong. There is nothing we can do for you. This might just be something your child has made up in her head.”

But as my symptoms persisted, 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 private Lyme facility in Wilton, Connecticut. Dr. Steven Phillips’ office sat in one of the wealthiest counties in the United States and serviced equally wealthy clientele.

I watched my mother, a third-grade public school teacher, play credit card roulette to pay the $800 out-of-pocket fee for each visit. While she didn’t bat an eye, I was inundated with guilt. We, like most American families, didn’t have the thousands of dollars to pay for treatments that I needed each month. For most families of Lyme victims, the staggering financial burden is a preeminent barrier to respite. As of today, it is the stance of the health insurance industry that chronic Lyme disease 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.

With extensive blood testing, Dr. Phillips finally diagnosed me with Lyme disease, after I had suffered in silence for three years.

Immediately, I began rounds of treatment. An amalgamation of antibiotic rounds, low-dose naltrexone, a strict diet, anti-virals, a robust supplement regimen, and anti-anxiety medication, among others, comprised my daily cocktail for the following three years. Treatment, therapy, and turning to alternative methods like magnet therapy, acupuncture, and Reiki paved my way to recovery.

After seven years of fighting Lyme disease, I am now a financial analyst on Wall Street, a master’s student at Columbia University, and training for a marathon — far from the tiled floors of my childhood bathroom. My parents have managed to stay financially afloat, and I can manage my persistent symptoms on a day-to-day basis with the aid of privatized care.

However, I will never get back the years that I lost to Lyme. If medical professionals were adequately informed of the gravity and scope of the disease, I could have been alleviated from years of suffering.

My case is not singular. According to the CDC, there are half a million cases of Lyme disease each year in the United States. Numbers continue to increase, and federal funding remains stagnant, with an average of about $60 of research funding being spent on each Lyme patient.

Lyme disease must receive sufficient funding and recognition by the CDC — to raise awareness, develop more accurate tests, and come up with more affordable and less 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.

Views and opinions expressed here are those of the authors, and do not necessarily reflect the official position of the Columbia Climate School, Earth Institute or Columbia University.

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Maggie Schaefer
Maggie Schaefer
1 year ago

Thank you Grace for sharing your lived experience and how you were able to get proper treatment and finally begin your journey to health and a normal life. I am so sorry that you and your family had to go through that and especially for you. My story and the story of my three children was a similar story but it happened from 1992 until 1999 when we were all left undiagnosed or misdiagnosed. It was an act of god that I too found Dr. Steven Phillips who treated me and led me down the path for my children to be treated by the late and amazing Dr. Charles Ray Jones. Without these two kind and courageous doctors I am sure we would not be in the same place as today.
I formed the Newtown, CT Lyme Disease Task Force with other sick mothers who also had sick children. I know first hand what that
prominent hospital tells parents and how they treat is negligence. But when you have a health department in CT that promotes and supports the denial of Chronic Lyme disease it is inevitable that way too many of us are falling through the cracks with dire consequences especially for our children. Thank you again for helping to shed light on this willfully neglected epidemic.

Thomas Grier
1 year ago

After 30 years as a Lyme researcher and LD patient advocate, I wish your experience was rare and unique, but no matter how many patients like you suffer, the medical community simply buries their heads in the sand. To. make new headway I believe we need Human-Brain-Research , that is to say brain pathology instead of serology, and we must look for many Borrelia species. But those that control the monies have denied all pathology based proposals because it proves them wrong. So sadly we need private funding. Hope your recovery continues smoothly. Thank You Grace for fighting for this cause!

10 months ago

The doctors at Kaiser (Redwood City) need training in protocol after someone receives a tick bite. Probably all doctors! Several doctors we encountered swore that there was no Lyme disease in Calfornia/Bay area. My husband has been bit several times -he developed the bullseye rash! We even brought them the tick that bit him! Kaiser did nothing for him and did nothing with the tick!
I have a friend who developed Lyme disease years ago. Someone eventually diagnosed the problem -but now she has very serious chronic health problems. Doctors NEED more training to pay attention to this disease.
I know of a man who was bit up at Pulgas Ridge Open space. he developed the disease!

Jason May
Reply to  Valerie
7 months ago

I got tick cut out of behind my ear in 1976. I was four. Doctor nor parents did anything after that. I lived a very depressed life. Isolating. Could not be comfortable around girls. Very shy and lots of derealization. Exactly ten years after bite could not get out of bed because of back problems. I was fourteen. Then ten more years later while with the absolute love of my life couldnt have children. Then panic attacks took over my life. Ten more years 2006 started hunching over from back problems. I was concrete contractor. Overachieving entire life. Started being very aggressive to employees. Customers and everyone. Then in 2016. Exactly forty years after tick cut out i lost alll function of life. Started sleeping twenty three hours day. Lost twenty pounds. Couldn’t remember how to drive. Write out bill no more brain function. Doctors said i had ms and schwannoma tumor on spine. Ten hour surgery to cut out tumor. Lost business. Vacation home. Good thing for overachieving because all was paid off at age forty. Had property to build new dream home on. Wife and i worked on that faithfuy almost daily for two snd half years until i was bedridden. Then passed it to wife. She just took her own life from psychosis and hallucinations. Now still crippled. Beyond painful depression along with missing love of my life. We had 32 years together. We were each others life. I don’t want to go on without her but can’t figure out how to commit what strength she did. I am stuck frozen everyday. Never leave the house. Dont care too much for cdc or idsa. I’ve learned why im in this terrible spot. Wouldn’t wish this upon enemy. Sorry its long suffering story. I have no support. Wife and i were everything to each other. She just couldn’t bear to feel this bad. Now only friend i have has it also. We both look like parkinsons patients without a brain. Would rather die. It hurts

Reply to  Jason May
3 months ago

Jason. I’ve just read your story. I’m so sorry you’ve had to deal with this. I can only imagine what you must be going through. I don’t personally have Lyme, but my step mother does. She went undiagnosed for 25 years after the symptoms started. I’ve witnessed the damage the disease and the drugs have done to her over the years and it is REAL. I hope you are able to get treatment for your illness. Not sure what course of action can be done since its been so many years undiagnosed, but surely there is something. I hope you find help. Both medically and mentally. The brain fog must make it difficult to manage. Do you have any other family? There are support groups online. Maybe reaching out to one of them can help guide your way to a better tomorrow. And your friends as well.