Madison Area Lyme Support Group

There are many reasons to feel guilty. I’m a nature writer who preaches about the importance of wild childhoods, and my daughter has been made chronically ill by one trip to the countryside. I’m a journalist whose job it is to interrogate information and yet I didn’t demand better answers for her from NHS doctors. But the guilt is most painful when I remember a freezing wet day in October 2021.

Milly’s U10s football club were playing the league’s top team. Milly, player of the year the previous season, a whirl of blond energy across the pitch, had lost her enthusiasm for the beautiful game. That morning, she really didn’t want to play: she was tearful and exhausted. There was nothing obviously wrong: no cough, sickness, temperature. Her twin, Esme, was playing but without Milly the team were a player short. I told Milly they needed her. Stoic, she staggered off but couldn’t step on to the pitch. Instead, she curled into a ball of misery and fatigue beside her coach. The rain fell. Her team lost 15-1.

I cringe when I flick through the notebook where I recorded my daughters’ football matches (I was tragically keen). Below most results from the 21/22 season, I’ve written “Milly ill” or, worse, “Milly played ¼” or “Milly played ½”. All the time, cajoled or compelled to lead her “normal” life, Milly was getting sicker and sicker. We had no idea what was wrong. Every morning she looked terrible, dark circles beneath her eyes. She complained of perpetual tiredness, talked of being “disconcentrated” – she later learned to call this “brain fog” – and mentioned strange stabbing pains, mostly in her feet when she walked. Soon, she was too ill to go to school. Lockdown was over but it had become a permanent state for Milly, my wife, Lisa, and me.

What we didn’t know then, and wouldn’t discover until this spring, was that Milly’s body was being invaded by an insidious bacterium, Borrelia burgdorferi, which hides in connective tissue, confounding immune systems, wreaking havoc. Milly had Lyme disease, which takes its name from Old Lyme, a coastal town in Connecticut. This bacterial infection is not contagious but is transmitted by a tick, a tiny, blood-sucking arachnid that hops on to human skin in the countryside, where it is transported by other mammals, particularly deer. There are 476,000, and rising, annual cases in North America alone. Global heating is making ticks, their bacteria – and human illnesses – much more prevalent. (See link for article)

_______________

**Comment**

Another beautiful life side-lined by a bacteria we still know very little about that is infecting people by the millions and chronically affecting the lives untold numbers.

If I had a quarter for every misdiagnosis that was Lyme/MSIDS, I’d be a millionaire.

Will things ever change?

For more:

• https://madisonarealymesupportgroup.com/2020/09/25/why-should-we-care-about-lyme-disease-a-colorful-tale-of-government-conflicts-of-interest-probable-bioweaponization-and-pathogen-complexity/
• https://madisonarealymesupportgroup.com/2019/02/22/why-mainstream-lyme-msids-research-remains-in-the-dark-ages/
• https://madisonarealymesupportgroup.com/2016/02/13/lyme-disease-treatment/