This is a story of our family’s journey through Chronic Lyme and all the twists and turns that can go with it told from my wife’s perspective. Lyme disease, known as the great imitator, presents with symptoms easily misdiagnosed because they look like other things at first glance. Early on, each medical professional seemed to bring their own bias to the table. Crushing fatigue and joint pain—Rheumatism! Muscle pain and rib pain—Lupus! Muscle tremor and memory issues—Multiple Sclerosis! Trouble swallowing and keeping balance—ALS! Deafness and Bell’s Palsy---Acoustic neuroma or brain tumor! We saw so many specialists in hope of an explanation. Most doctors were too busy or too confident in their experience to consider anything other than the simplest explanation that most closely matched a tried and trusted protocol. We came away frustrated because only a few symptoms could be treated, but a root cause was not found nor even sought. Under normal circumstances Physicians typically see a patient every 15 to 20 minutes and find solutions that seem to work, with little time to solve a complex problem.
A chance conversation with a colleague about my wife’s symptoms and deteriorating condition lead us to an internist with a reputation of doing sound science by exploring all the data from tests and procedures and taking time to puzzle it out. Concurrently, my wife and I scoured the literature and kept coming back to one possibility. Our suspicions were confirmed for us when the internist told us he believed Lyme disease was a strong possibility as root cause. Lab work confirmed the diagnosis of Lyme, a prescription of Doxycycline was given and, as one often does when facing severe illness and symptoms, she sought a specialist’s care.
Feeling as if we’d reached the center of a winding labyrinth, we needed to find our way back out. Finding a specialist proved to be a daunting challenge. Little did we know there was so much controversy surrounding the treatment protocols for Lyme, especially when her disease had progressed for so long without diagnosis and treatment.
The treatment journey was just as daunting as the diagnostic one, with snake oil salesmen and self-proclaimed healers offering expensive “shortcuts” to wellness, insurers denying legitimate treatment, and doctors refusing to treat or treating according to outdated protocols. Politics and controversy, temptation and despondency eventually lead to relief and resuming our life.
This is our story.
A chance conversation with a colleague about my wife’s symptoms and deteriorating condition lead us to an internist with a reputation of doing sound science by exploring all the data from tests and procedures and taking time to puzzle it out. Concurrently, my wife and I scoured the literature and kept coming back to one possibility. Our suspicions were confirmed for us when the internist told us he believed Lyme disease was a strong possibility as root cause. Lab work confirmed the diagnosis of Lyme, a prescription of Doxycycline was given and, as one often does when facing severe illness and symptoms, she sought a specialist’s care.
Feeling as if we’d reached the center of a winding labyrinth, we needed to find our way back out. Finding a specialist proved to be a daunting challenge. Little did we know there was so much controversy surrounding the treatment protocols for Lyme, especially when her disease had progressed for so long without diagnosis and treatment.
The treatment journey was just as daunting as the diagnostic one, with snake oil salesmen and self-proclaimed healers offering expensive “shortcuts” to wellness, insurers denying legitimate treatment, and doctors refusing to treat or treating according to outdated protocols. Politics and controversy, temptation and despondency eventually lead to relief and resuming our life.
This is our story.
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