Chronic Lyme Disease Is Getting Noticed

Sue Gray was taking a shower one day and felt a tick on her scalp. She was 30 years old at the time and lived with her then-husband in the middle of the woods in upstate New York. Her husband plucked the insect off with tweezers, and “that was the end of that—for that day,” Gray, now 59, recalled to Time magazine.

Gray’s health started deteriorating over the next few months. She had frequent respiratory infections and developed a twitch in her eye. A few weeks after the twitch started, Gray said it felt like ants were crawling up and down her legs, but there was nothing there. Gray’s declining health prompted her to see a neurologist. As she thought about her tick bite, she asked to be tested for Lyme disease. The test results, however, came back negative. False-negative results are not uncommon since it can take several weeks for the immune system to make enough antibodies to be detected by the test, according to the U.S. Centers for Disease Control and Prevention (CDC).

Over the next 20 years, Gray developed numbness and tingling in her back, chronic pain, anxiety, and an uncontrollable rage that made her feel like an entirely different person. Gray knew something was seriously wrong, but she didn’t know what. “I was scared to death,” she told Time.

In 2007, Gray was diagnosed with multiple sclerosis. Seven years later, she was hospitalized because her symptoms got worse. The doctors ran a battery of tests, and one test came back positive for Lyme disease. Gray’s long-held suspicion was confirmed. According to the CDC, once the blood tests are positive for antibodies, it will likely continue to do so for months to years, even when the bacteria has gone.

Lyme disease is an illness caused by the bite of a deer tick (also known as a black-legged tick) that is infected with a bacteria called Borrelia burgdorferi. Not all ticks carry this bacteria. The tiny insect lives in wooded and grassy areas but is sometimes found in lawns and shrubs. Ticks can crawl onto clothes or stay on the body for hours before attaching to the skin. People who spend time outdoors, particularly in places where ticks are found, are at a greater risk of getting the disease. Pets can also bring ticks into the home and transfer them to their owners.

According to the CDC, an estimated 476,000 people in the United States are diagnosed and treated for Lyme disease each year. And many people, like Gray, have struggled for years to convince family, friends—and their doctors—that something is seriously wrong with them.

Patients, patient advocates, and researchers say that some in the medical community have long minimized or completely rejected the idea of chronic Lyme disease. Kim Lewis, a biology professor at Northeastern University who researches Lyme disease, believes this is due to the medical system feeling uncomfortable with uncertainty.

“It is much easier, psychologically, to conclude that chronic Lyme doesn’t exist” than to say that it does, but no one knows what to do about it, Lewis told Time. “The best way to solve a problem is to announce that it doesn’t exist.”

The CDC says that most people recover from Lyme disease when treated with a two- to four-week course of oral antibiotics. However, about 5-10 percent of patients develop post-treatment Lyme disease syndrome (PTLDS), a condition with prolonged symptoms, such as persistent fatigue, body aches, and difficulty thinking. A 2022 study published in the International Journal of Infectious

Diseases found that 14 percent of patients who were properly treated for Lyme disease still had prolonged symptoms.

A Renewed Focus on Chronic Lyme Disease

The push from patients and patient advocates and more studies being conducted on long-term COVID-19 (the name of new and recurring symptoms following a COVID-19 infection) have brought a renewed focus on Lyme disease and PTLDS over the last few years. For instance:

In 2021, Columbia University established a treatment center and clinical trials network for Lyme and tick-borne diseases.
In 2023, Yale University launched a new research center to investigate infectious diseases and post-infectious illnesses, including chronic Lyme disease.
In 2023, the U.S. National Institute of Allergy and Infectious Diseases awarded $3 million in first-year grants for PTLDS research.
Some scientists are working on developing at-home tests, urine tests, and improving antibody tests.

Lindsay Keys, a patient advocate who directed The Quiet Epidemic, a 2022 documentary on the subject, met with elected officials in Washington, D.C., to call for a public awareness campaign and more funding for research related to Lyme disease.

“The research is finally happening, exploring the questions that patients have been asking all along,” Keys told Time.

Signs and Symptoms of Lyme disease

Lyme disease typically occurs in three stages, according to the Arthritis Foundation. In the early stage of the disease, people experience symptoms that resemble a mild flu, such as:

Fever
Chills
Headache
Fatigue
Muscle aches
Swollen lymph nodes

A red skin rash in the shape of a bull’s eye may appear at the site of the bite within a month.

If left untreated for several weeks, new but worse symptoms can occur in the second stage:

Severe headache and neck stiffness due to inflammation (meningitis)
Bell’s palsy (paralysis on one or both sides of the face)
Heart and nervous system issues
Pain and swelling in the large joints
Shooting pains causing sleep problems
Heart palpitations

The third, or late stage, of the disease, can occur months or years after the bite and spiral into health problems that include:

Arthritis, particularly in the knees
Weakness
Memory and concentration problems
Neurological issues, such as shooting pain, numbness, or tingling in the hands and feet

Currently, there is no human vaccine for Lyme disease, which not only takes a toll on a person’s physical health, but on a person’s mental and emotional health—and finances—as well.

Cody Mode, a 30-year-old Maine resident, says he and his wife, Rose, who has been diagnosed with Lyme disease, cannot hold full-time jobs. Mode says he has been struggling for years with long-term symptoms of Lyme disease, which he believes he developed as a child when a tick in Alaska bit him. His symptoms continued, but his condition went undiagnosed for years. In fact, Mode told Time that one doctor shook him by the shoulders and shouted that it was all in his head. It wasn’t until he was in his mid-20s that he was diagnosed after taking a test from a private laboratory.

Besides his wife, Mode said two of his five children have also been diagnosed with Lyme disease, and the other three children have Lyme-like symptoms, but haven’t officially been diagnosed.

Despite more progress being made, Mode said he still sees doctors who believe nothing is wrong with his family and dismisses their diagnoses, saying they’re based on “quack tests.” “Every time I go to the doctor, I’m worried,” he says.

Source Links:

https://time.com/6974403/chronic-lyme-disease-research/
https://www.cdc.gov/lyme/diagnosis-testing/index.html
https://www.cdc.gov/lyme/signs-symptoms/chronic-symptoms-and-lyme-disease.html
https://www.arthritis.org/diseases/lyme-disease