Why Is Chronic Lyme Still a 'Do-It-Yourself' Disease?
How is it that chronic Lyme disease is an illness that hundreds of thousands of people are forced to navigate primarily on their own, save for a handful of brave and noble doctors? How is it that chronic Lyme is a “do-it-yourself disease” (aptly coined by senior producer Kris Newby of award-winning “Under Our Skin” fame), where patients are forced to be their own diagnostician, medical researcher, medical investigator, microbiologist, rheumatologist, neurologist, immunologist, and the like?
We’ve come to expect doctors will open their doors, their minds and their hearts, and will naturally be prepared to listen, seek, research, learn, confer, support, and prescribe. With chronic Lyme disease, world-over, patients are often not afforded such treatment. Rather, they are told they are “crazy,” that it’s all in their heads, that no more can be done after a round or two of antibiotics. They are mocked, ridiculed, negated, scoffed at, met with disbelief and apathy… and often shown the door.
A Facebook image I posted several weeks ago said: “Lyme gets ‘treated’ more humanely on Facebook than in most doctors’ offices.” In just a day or two, this post reached more than 60,000 people. Why? Because it hit a nerve. It spoke to the stark reality affecting so many.
Then there was the post I wrote that said: “Lyme sufferers are victimized in at least five different ways: by the disease itself; by doctors who turn their backs; by loved ones who roll their eyes and walk away; by insurance companies who refuse coverage; by the CDC and IDSA who insist that chronic Lyme disease does not exist.” This post reached more than 106,000 people. Again, hitting a sweet spot of truth.
Everywhere I turn, when the subject of chronic Lyme disease comes up, I am asked time and again, “Why don’t doctors treat Lyme?” With a puzzled look, they’ll say, “But I don’t understand.”
That’s right. You can’t understand because even those of us who live in the Lyme world — researching, consulting, analyzing, and studying daily — barely understand. All we do know, with utmost certainty, is we are living in a parallel universe where up is down and down is up. Where the majority of doctors don’t play much of a role in treating or navigating the potential recovery of this life-altering disease. Where Lyme patients are let down every day, left on their own to figure it out, and are completely abandoned by the very professionals who have taken an oath to “do no harm.” (Last I checked, medical negation, invalidation, and abandonment of patients, all of whom are experiencing their own living hell, would be seen as doing great harm.)
How can a disease that is clearly infecting and affecting so many — requiring and creating more than five decades of activism, debate, controversy, heartbreak, confusion, outrage and untold anguish — be so widely ignored?
If this question were easy to answer, and I really wish it were, there would be no need for a book like mine or the daily efforts of many valiant heroes in the ongoing Lyme Wars — heroes who have been fighting this battle for years, with little change or resolution to speak of.
Ever since the first outbreak of chronic Lyme disease in Lyme, Connecticut in 1975, when Polly Murray first alerted the medical authorities to her strange and unexplained symptoms plaguing her and her family, when doctor after doctor could not explain what was happening to them or why, Murray was forced to try to figure it out on her own, without the support of the medical system.
The lack of medical interest, attention, and outright negation of Murray’s pain led to her own personal examination and exploration of the disease she and her family were experiencing. Murray was a pioneer in the understanding and recognition of what we now call chronic Lyme disease. Her efforts eventually led to Dr. Willy Burgdorfer‘s 1982 discovery of the bacteria that causes Lyme disease.
Now four decades later, we are still fighting the same fight — the very same battle that compelled Murray to lead the charge way back when. Now, all these years later, we are still waging the very same war against the medical powers-that-be who continue to insist chronic Lyme disease is “difficult to catch, easy to diagnose and easy to treat.”
When will this war end? When will doctors sit up, take notice, realize that things do not add up, and act courageously and appropriately outside of the outdated, ineffective protocols that were never designed to treat this neurological, systemic illness we know as chronic Lyme in the first place? What will it take to effect a complete shift in attitudes and offer widespread medical understanding and support to patients? What will it take to veer from a “do-it-yourself” disease to one in which the medical community will act responsibly as their medical license so mandates?
This post originally appeared on LinkedIn.
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