I Have No Idea What Lyme Disease Is…
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Lyme & tick-borne disease (Lyme+) isn't rare. It's just rarely understood.
1.16 Billion People Have Had Lyme Disease
A study published in BMJ Global Health found that 14.5% of the world's population has, at some point, been infected with Lyme disease, and prevalence has doubled over the past decade. In 2018, the CDC estimated that approximately 476,000 Americans are diagnosed and treated annually in the U.S. That figure is more than annual cases of breast cancer, HIV, and tuberculosis combined. Most people think of tick-borne disease as a hiker's problem, only in the Northeast, or a bull's-eye rash you'd definitely notice. All of these assumptions have been proven wrong.
What Lyme Disease Actually Is
The corkscrew-shaped bacteria responsible for Lyme disease specifically is called Borrelia burgdorferi. While commonly transmitted through the bite of an infected tick, usually a blacklegged tick or deer tick, there is research that suggests it can also be passed congenitally, in utero.. Lyme disease is the most common tick-borne disease in the Northern Hemisphere. Early signs of infection may include a rash, fever, headache, and fatigue. Left untreated, the infection can become systemic, spreading to the joints, heart, and nervous system.
Most people never know they were bitten. Only about one-third of people with documented Lyme disease recall a tick bite. The bite is painless. The tick is often the size of a poppy seed.
Common Co-infections with Lyme Disease
An infected tick often transmits more than one pathogen at once. This is why we use the term "Lyme+." It refers to Lyme disease and its common co-infections: other tick-borne illnesses that layer on top of each other, making diagnosis even more complex. Other common tick-borne diseases include Bartonella, Babesiosis, Mycoplasma, Ehrlichia, Anaplasma, Powassan Virus, Rocky Mountain Spotted Fever, and Alpha Gal.
Is there a rash?
Despite public perception, the most common Lyme rash is a uniformly red, round or oval rash — not a bull's-eye. The rash expands to greater than two inches in diameter and is often the first visible sign of infection. In a survey of over 6,000 patients, only 17% had the classic bull's-eye, despite it being widely cited as the primary symptom. And some people don’t even have one at all—a recent study stated that only approximately 40% of people with chronic Lyme recalled a rash.
Early Lyme Disease
Symptoms typically appear days to weeks after a tick bite and include an expanding red skin lesion or rash and flu-like symptoms—achiness, chills, fever, fatigue, headache, stiff neck, and joint pain. In the early stage, the bacteria have not yet spread throughout the body.
Caught early, Lyme disease can be treated. However, even with early diagnosis and treatment, studies suggest that up to 36% of patients continue to experience persistent symptoms. And even when trying to catch it early, a recent study showed that the common FDA-Cleared tests miss 64-78% of early cases. Blood tests check for antibodies the body produces in response to infection, and your body needs a few weeks to build them up. Test too soon, and you'll get a false negative, even if you're already infected. To make things worse, the standard testing protocol was designed with later-stage infections in mind, so it lacks the sensitivity to catch early cases to begin with.
Late and Chronic Lyme Disease
Left untreated, Lyme bacteria and other pathogens can spread throughout the body and go into hiding in different tissues and organs. Weeks, months, or even years later, patients may develop problems affecting the brain and nervous system, muscles and joints, heart and circulation, digestion, reproductive system, and or skin—some symptoms can disappear on their own, only for new ones to emerge later.
Late-stage symptoms are severe and wide-ranging. They can include debilitating fatigue, facial paralysis, cognitive dysfunction, nerve pain, and serious cardiac complications—the CDC has even documented cases of sudden cardiac death linked to Lyme. Many patients develop chronic arthritis alongside worsening neurological symptoms. More than 40% of chronic Lyme patients are eventually unable to work because of the disease.
A treatment delay of 30 days or more than doubles the odds of long-term illness. Patients whose treatment was delayed by more than 30 days had more than twice the odds of developing persistent symptoms after a course of antibiotics ends.
Why Lyme Disease Is Missed
Lyme+ symptoms overlap with hundreds of other diagnoses. Fatigue, joint pain, cognitive difficulty, and mood changes—these mirror autoimmune conditions, fibromyalgia, and psychiatric presentations. Over half of patients in a large survey were misdiagnosed and spent more than two years with symptoms before receiving a correct Lyme diagnosis.
Co-infections dilute the diagnosis. A person with a Lyme co-infection generally experiences more severe illness, more symptoms, and a longer recovery, and most doctors do not test for co-infections, let alone treat them.
Lyme receives a fraction of the research funding its case count warrants. It receives less than 2% of the public funding allocated to West Nile virus, and just 0.2% of what goes to HIV/AIDS—despite an exponentially higher annual case count. The gap between what the Lyme+ community knows and what the rest of the world understands is wide—and it has real consequences: delayed diagnoses, dismissed symptoms, and a generation of patients who spent years searching for answers.
Understanding Lyme+ starts here.
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