Chronic Lyme Disease: Does It Exist?
The simple answer is yes and with that comes the fallout of years of controversial arguments, evidence, advocate and patient abuse. I say abuse because as current times have proven, we all have opinions on what’s going on around us and those opinions, given with evidentiary proof or not, are threaded with experience, misdiagnosis and medical neglect. And yet, amid all that, some patients do get better, but it is not quick or without struggle. Patients suffering from Lyme and other tick-borne diseases have to fight for everything they have. From diagnosis to treatment to support, every patient faces an uphill battle just to reclaim their health.
On May 21, 2020, the former chair of the Tick-borne Disease Working Group, Dr John Nathaniel Aucott, MD, Director of the John Hopkins Lyme Disease Clinical Research Center wrote an article in The Conversation, stating, “After studying chronic Lyme Disease for over 20 years, it has become obvious to me that the problem is deeper and more complex than the polarized debate over the controversy would make one believe.”
He wrote about a healthy, 40-year-old nurse who presented to her doctor with symptoms that appeared quickly; neck pain, extreme fatigue, intermittent fever and chills. She wondered about Lyme Disease but did not recall a tick bite or bulls-eye rash and was told it was most likely a virus. Within 24 hours, she felt worse and went to the ER and was diagnosed with mono. A few weeks later, she returned to the ER with trouble breathing and low blood pressure. Test results revealed Lyme Disease and they discovered it had spread to her heart. Antibiotics resolved her heart and breathing issues, but the fatigue and joint pain remained along with new concentration issues. She was told she had post-treatment Lyme Disease syndrome, formerly called Chronic Lyme Disease that has no instructions for treatment or recovery.
For the past 10 years that I’ve been advocating for patients and their families, it has become clearer to me that the controversy is far from over, even with modern statements made by experts such as by Dr Aucott, Associate Professor of Medicine at esteemed John Hopkins University and the dozens of researchers and medical providers who have taken it upon themselves to study not only Lyme Disease but the many other tick-borne diseases transmitted by the variety of ticks around the world. New species, new diseases and new strains of existing diseases requires an open mind and attention to detail. It requires someone following the evidence trail as it stands before them.
Dr. Aucott stated that he and his colleagues have followed patients from diagnosis and through treatment as they recover and what they have discovered, “runs counter to the mainstream teaching about Lyme Disease. Doctors still don’t know how to accurately diagnosis and patients don’t always get better, even with proper diagnosis and treatment. Physicians lack the diagnostic tools for early diagnosis and for documenting the cure of the disease.”
In her own words, the nurse from the article said, “I felt dismissed and abandoned. No one stopped to listen to my story and advocate for me.”
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Paula is the President of the MLDSE, the 2018 Co-Chair of the Access to Care Services and Patient Support subcommittee of the Federal HHS Tick-borne Disease Working Group, the Maine-partner of the national Lyme Disease Association, member of Maine’s CDC Vector-borne Workgroup and active in Maine’s Lyme legislation. You can reach her at: firstname.lastname@example.org or visit: www.mldse.org.