For thirteenth Milly, her life was very different prior to the summer of 2021. After an otherwise perfect family day splashing about in wildly picturesque Lake District, she had probably picked up Lyme Disease. Milly used to be an active, outgoing, intelligent girl full of life. As the world slowly came out of a global pandemic, her own health started to deteriorate. This decline was starkly evident when her U10s football team faced the league’s top team and suffered a crushing 15-1 defeat, a match where Milly’s enthusiasm for the game had noticeably waned.
Milly, who was as famous for her soccer prowess as she was for her brain, had been given the name “Mensa Milly” by her uncle. Then, she unexpectedly started experiencing extreme fatigue and other life-altering symptoms. Though she was getting lots of sleep and eating good home-cooked meals, her health started going downhill more and more. By fall of 2024, Milly had spent more than a third of her young life battling an unseen, debilitating illness. As a result, this crisis robbed her one full year of schooling.
Then Milly’s health took a turn, forcing her to find answers. Her search led to the discovery of what would later be called Lyme disease, named after Old Lyme, Connecticut. Her symptoms started inconspicuously with fatigue that summer, but as time went on, her condition deteriorated.
Milly’s road to treatment led her to a specialist clinic in London this past December 2021. Though it looked less like a medical institution than a relaxing spa, that facility began to take care of her needs in a way she hadn’t experienced before. During this time, she turned to literature for solace, reading Miranda Hart’s “I Haven’t Been Entirely Honest With You,” which chronicled Hart’s own struggles with Lyme disease and the skepticism she faced from medical professionals.
As we learned from Milly’s treatment, the statistics on her health are downright scary. Initially, her borrelia (tick borne illness) levels were at 430.50. After intensive therapy, those levels dropped down to a mere 6. It underscored the challenges involved in diagnosing and treating Lyme disease — a disease often grievously mischaracterized by the broader medical community.
Her story isn’t uncommon, and the frustration it exudes resonates with many doctors who are challenging the status quo of treatment protocols. Dr. Jack Lambert, an infectious disease specialist, last year expressed his skepticism of conventional treatment methods for Lyme disease. He argues against the use of a week long course of doxycycline for this condition.
“What evidence does the NHS have that people are cured after three weeks of doxycycline?” – Jack Lambert
Dr. Lambert elaborated on why the dominant medical story about Lyme disease is deeply misleading.
“The strange thing about Lyme disease is the medical community have spent all their time denying its existence and its complexity,” – Jack Lambert
Monica Embers, another top specialist in the field, backed Lambert on worries about treatment effectiveness.
“This assumption that doxycycline is the be-all, end-all antibiotic is flawed. We need to do better,” – Monica Embers
Milly didn’t back down.
“Because I’ve tried loads of things, it’s hard to believe this will really work,” – Milly
This lack of assurance has added to her overall anti-medical and anti-recovery feelings.
“I’ve lost faith in medicine and practitioners. I’m not feeling much better either. It’s difficult to think of the future right now – where my life might lead,” – Milly
Dr. Ben Sinclair, after many years taking care of chronic illness patients. He doesn’t pretend to cure them, but he fervently works to get them up and moving again and bring their bodies back into balance to strengthen their immune systems.
“Sometimes the physical recovery comes later,” – Dr. Ben Sinclair
Milly’s story underscores an important, if not critical, need for further and broader research on Lyme disease and its diverse presentations. The complexity surrounding this illness demands greater attention from both the medical community and researchers to ensure patients receive adequate care.