I’ve been off the grid again. This time immersed in the science and wisdom of Lyme and tick-borne diseases (TBD) at the International Lyme and Associated Diseases Society (ILADS) annual international conference.
I learned so much to help me care for these chronic, complex, long-suffering clients, increasingly showing up at my door.
I wanted to share some big themes.
ILADS clinicians and researchers are the ultimate bad-asses—pioneers working tirelessly, without support, many for decades, under the weight of intense scrutiny and threat to their livelihood, to legitimize the truths that:
- TBDs are real.
- They persist without proper treatment (a notion not accepted by much of mainstream medicine).
- We have ways to successfully help those suffering.
- Many researchers are intensely working to discover even better treatments.
I bow to them.
Rising to the call of this epidemic, to work with sufferers of TBD illness, is lonely and exhausting. We’re a tribe of few without the support of institutions of power—academic medicine, the Center for Disease Control, research funding sources of the US government—who fail to acknowledge the existence of persistent TBDs or respond to the call of the complexities o this rising epidemic and those suffering.
The mindsets of many mainstream physicians and medical institutions regarding Lyme and TBD are bizarre. Far too many are completely unwilling to acknowledge the epidemic, to hear their patients’ stories, to examine the evidence, and to think through the problems—and solutions—for themselves. Leaving their patients to suffer needlessly.
All in the face of overwhelming evidence that persistent Lyme and TBD exist. They’re real. The suffering is real. The evolving solutions to end the suffering are real.
I live in a community near two top tier academic medical institutions. The one in my hometown has a clinic dedicated to the treatment of Lyme disease. However, the absolute requirement for admission is a positive Borrelia burgdorferi (Lyme disease spirochete) IFA or ELISA test, in spite of the fact that the false negative rates of these tests are high (especially in early or persistent Lyme disease), making them useless to exclude disease. Barring entry based on this requirement precludes understanding the context of the patients’ stories—the critical histories that are always the crux of the best medical diagnostics and treatment.
The other institution, a state away, considered to be the “mecca” of western biomedicine, likewise follows the same diagnostic standard. Neither institution allows for the emerging understanding that persistent forms of TBD exist. Both stick with an outdated and arbitrary treatment option (twenty-one days of Doxycycline, nothing more) in spite of the certainty we now have that Borrelia organisms cycle through different morphological life stages in which different classes of antibiotics are required to kill it. And Lyme co-exists with a wide variety of co-infections that require different treatments.
My plea:
- Physicians—
Think for yourselves. Listen to your patients. Look at the evidence yourselves rather than adopting arbitrary standards for diagnosis and treatment. Accept uncertainty and complexity in how your patients present to you and how you must treat them. It’s a mess. We have much to learn. But this is our duty.
- Those with chronic complex disease, mystery illnesses, or diagnosed Lyme with “failed” treatment—
Don’t give up. Go straight to the ILADS website and learn. Work with a “Lyme literate” physician (preferably with a Functional Medicine background—they’ll work to support you comprehensively in addition to treating the infectious pathogens) to help you heal.
- Everyone—
Question authority. Always. Accept uncertainty (it’s the only certainty in life). Be willing to take the risk of doing what’s right even in the face of scrutiny or criticism. Peoples’ lives may depend on it.
Thanks for listening.
Have a Beautiful day!
Karyn
Resources:
International Lyme and Associated Diseases Society (ILADS).
Incidence of Clinician-Diagnosed Lyme Disease, United States, 2005-2010. Nelson, et al. Emerging Infectious Diseases. Volume 21, Number 9—September 2015.
Cameron, et al. Evidence assessments and guideline recommendations in Lyme disease: the clinical management of known tick bites, erythema migrans rashes and persistent disease. Expert Rev Ant Infect Ther. 2014 Sep; 12(9): 1103-1135.
p.s. If you haven’t read it yet, I’d love to share my new e-book with you. It’s all about how to create the space we need to heal—by letting go. Download it for free by signing up: Let Go—The Nine Domains of Healing: Step One.
