HOW OFTEN IS LYME DISEASE MISDIAGNOSED?
According to Mayo Clinic’s study, on average — only 12% of patient illnesses are correctly diagnosed by primary care providers. That means roughly 9 out of 10 people are given the wrong diagnosis.
Additionally, a John Hopkins study found that medical errors were actually responsible for the death of 251,000 Americans each year!
LYME MISDIAGNOSIS IS NOT UNCOMMON
Here are a number of reasons why:
Detection of the bacteria is difficult with current methods
People often test positive for Lyme disease when in fact they have a different bacterial illness.
People may test positive because they were infected with the Lyme disease bacteria at some point during their lives, but the infection may not be active and may not cause any illness.
People may test negative when they actually have been infected.
Symptoms resemble those of other illnesses
Chronic Lyme disease, for instance, has symptoms very similar to those of several other chronic illnesses, such as juvenile idiopathic arthritis, fibromyalgia, and myalgic encephalomyelitis/chronic fatigue syndrome.
Multiple sclerosis and arthritis also have symptoms similar to Lyme disease.
SELF-ADVOCACY
Some doctors may hesitate to diagnose based on symptoms because they are accustomed to using highly accurate tests for other diseases, or because Lyme symptoms can look like those of multiple other illnesses. This is when Lyme patients need to advocate for themselves.
From Global Lyme Alliance:
…we grow up thinking of doctors as all-knowing. Whatever ‘the doctor’ said—be it the Primary Care Physician, the family doctor, or the ER doctor—was once deemed absolute.
This doesn’t have to be the case.
Patient advocacy serves an important purpose in a strong democratic society; they hold public institutions accountable for their actions, raise awareness for lesser known ailments, and humanize the medical sciences.
Read more about stories of self-advocacy in these articles:
Take Charge of Your Health: Become Your Own Patient Advocate | Jill Wichner
You Know Your Body Best | Jennifer Crystal
Stepping into Self-Advocacy | Kate Sheridan
What Lyme Disease and Its Aftermath Taught Me About Self-Advocacy | Charlotte Brouwer
CDC’s PREFERENTIAL TREATMENT
The Centers for Disease Control and Prevention’s (CDC) provides preferential treatment to outdated IDSA Lyme guidelines instead of the more scientifically-supported, patient-centered ILADS guidelines. This has long been refuted by many clinicians and patients as it harms chronically ill patients, who are frequently misdiagnosed and denied medically necessary treatment because of restrictions imposed by the IDSA guidelines.