“I’ll connect you back to the front desk to arrange an appointment.”
I felt a lump in my throat. “Thank you, Doctor.”
My mind raced as my heart pounded in my chest.
“Hello, Ms. Thompson, let’s get you scheduled.” Her overly casual tone made me bristle. Nothing felt normal.
“Congratulations, by the way,” she continued, listing potential appointment dates.
“What do you mean?”
“Congratulations on receiving a diagnosis. You’re fortunate. Many people go years misdiagnosed or told it’s all in their heads.”
I hung up, attempting to comprehend the situation. My daughter had been diagnosed with Lyme disease. Wasn’t having an answer to her persistent physical and neurological issues a good thing? I paced around the house, repeatedly questioning myself.
At that time, I didn’t fully understand the implications. I knew there would be a steep learning curve filled with confusion and fear. However, I was unprepared for the hostility surrounding the disease itself. I didn’t realize that many doctors would deny the reality of what was afflicting my child. The standard treatment felt more like a dismissive gesture than a legitimate solution—akin to checking under the bed for monsters to soothe a child’s fears when the monsters are very real.
This monster is Lyme disease, a condition that is increasingly affecting children and adults across the United States. The CDC estimates that over 300,000 new cases of Lyme disease arise each year, with only ten percent being accurately diagnosed. This means that 90% of those infected are living in ignorance of what is making them ill. Many endure severe symptoms, including organ failure, debilitating joint pain, muscle weakness, difficulty breathing, and neurological issues like seizures and psychosis. According to the CDC, approximately 270,000 people remain unaware that Lyme is the cause of their suffering.
Why is Lyme Disease Often Undetected?
Why is effective treatment so elusive and costly? At the heart of the issue is the politicization of Lyme disease.
A disease that impacts countless individuals—growing by 300,000 new infections annually—has become a political issue. When medical conditions are politicized, the well-being of patients often takes a backseat to financial interests and power dynamics.
The CDC endorses Lyme disease guidelines established by the Infectious Disease Society of America (IDSA), which, following a 2006 Connecticut Antitrust investigation, was found to have conflicts of interest. The IDSA’s 2006 Lyme disease guideline panel undermined its credibility by allowing individuals with financial ties to drug companies and diagnostic tests to dismiss alternative evidence and opinions. They did not adhere to the National Academies of Sciences, Engineering, and Medicine’s recommendations for developing treatment guidelines.
This is alarming. The organization responsible for establishing treatment and diagnosis protocols for a serious and sometimes fatal disease allowed financial interests to influence its guidelines.
“Congratulations on her diagnosis.” These words lingered in my mind as I delved deeper into the complexities of my child’s condition.
We have no idea when my daughter contracted Lyme disease. We never spotted a tick on her and there were no rashes. Over the years, vague symptoms escalated into something more serious.
We were fortunate; we didn’t spend years seeing multiple doctors before receiving a diagnosis. We were lucky because we were able to catch the Lyme testing at the right moment. Antibodies just happened to emerge in her blood when we tested her. Timing is crucial with Lyme testing. The tests are designed to identify the immune response to the infection rather than the Lyme bacteria itself, leading to numerous false negatives over time as symptoms worsen.
Lyme tests are outdated and inadequate for detecting this elusive bacteria. States like Virginia and Maryland have enacted Lyme Disease Testing Disclosure Acts that require doctors to inform patients that a negative result does not rule out Lyme infection. Yet, many physicians across the country insist that a negative test eliminates the possibility of Lyme.
The CDC promotes an inaccurate two-tiered testing system that detects less than 50% of Lyme infections, making it increasingly difficult for patients to receive a proper diagnosis and treatment. When insurance companies use CDC guidelines to deny coverage, patients are often left to bear the financial burden themselves or go without treatment altogether. The monster exists within them, but the system conveniently denies its existence, allowing insurance companies to avoid responsibility.
People are beginning to advocate for themselves, educating others and connecting with fellow patients. Celebrities have shared their own Lyme experiences, highlighting the widespread nature of misdiagnosis. If the affluent face years of suffering without a diagnosis, what does that mean for the average patient? It leaves countless individuals in pain.
For instance, musician Alex Turner spent years suffering from what he thought was chronic fatigue before being diagnosed with Lyme. He now advocates for awareness and better testing. Similarly, actress Claire Johnson endured debilitating fatigue and cognitive decline for years before finally being tested and treated for Lyme disease.
What Every Parent and Caregiver Should Know
- Lyme disease is among the fastest-growing infectious diseases in the U.S. and Western Europe.
- The CDC reports that roughly 329,000 individuals are diagnosed with Lyme disease every year in the U.S.
- Less than 50% of Lyme patients recall a tick bite; similarly, fewer than half exhibit the characteristic bull’s-eye rash.
- Many ticks, particularly in their nymph stage, are nearly impossible to detect, and they can transmit Lyme disease.
- Symptoms may not manifest until days, weeks, or even years post-infection.
- Various strains of Borrelia (the bacteria responsible for Lyme) and numerous co-infections complicate diagnosis and treatment. The disease is often misdiagnosed as other conditions, including dementia, bipolar disorder, and more.
As we continue our journey a year post-diagnosis, we are treating my daughter’s Lyme disease and co-infections in stages. Our approach includes herbal supplements, homeopathic treatments, and antibiotics. Each co-infection necessitates a different treatment, making progress slow but tangible. Recently, she tested positive for mold exposure, adding another layer to her recovery.
Lyme disease is not a uniform condition; it presents uniquely in each patient and requires tailored treatment. While our path has been challenging, we are fortunate to afford treatment and find a physician who takes her symptoms seriously. This underscores the importance of education and advocacy, pushing the medical community to acknowledge this illness.
For further reading on related topics, check out this article about insemination kits, or explore this resource for couples on their fertility journey. Additionally, Mount Sinai’s resources provide valuable information for those navigating infertility issues.
In summary, Lyme disease is a complex and often misdiagnosed condition that many children and adults face. The lack of reliable testing and the politicization of the disease make the road to recovery challenging, emphasizing the necessity for education and advocacy.