Lyme disease horror story is a must read for Mainers

I thought – given that I have friends with Lyme disease, some of whom have suffered terribly, that I would be prepared for Andrea Caesar’s A Twist of Lyme, published last year by Archway Publishing. But I was wrong.

Twist_of_Lyme_Andrea_Caesar_1This story is gun-wrenching, raw, hard to read, relentlessly troubling. Subtitled, “Battling a Disease That ‘Doesn’t Exist,” the book is a collection of Caesar’s blog posts as she fought the disease with astonishing toughness and determination.

But don’t be fooled – there’s no happy ending. Caesar is still alive, and still blogging, but her battle with Lyme will last her lifetime.

Given the spread of Lyme disease in Maine, and the need for more medical attention to this terrible affliction caused by deer ticks, every one of us should probably read this book.

Caesar, who contracted Lyme when she was 11 years old and eventually became almost totally disabled, is very critical of the medical community. She eventually, at the age of 36, found Dr. Joseph Jemsek who treated her disease aggressively.

Taking 50 and more pills a day, suffering through surgeries and lots of experimental trials, encountering huge expenses, leaning heavily on her parents to care for her and her young daughter, Caesar’s life has been one long roller coaster ride.

In the Afterward, Caesar writes, “I still take about fifty pills a day and I still have one to two weeks a month where I am floored and cannot move, as every little breath causes great physical distress.” Believe it or not, this is a great improvement for her.

I will guarantee you one thing. You will grow to admire Andrea Caesar, who punched through life, traveling the world, succeeding in business, and bringing up a child, while suffering a debilitating, painful, horrible disease. This is an amazing story.

tick removerLet me leave you with one strong recommendation. In addition to reading this book, buy a few of those small plastic spoons with the slit that can easily extract ticks that are embedded in your skin. Put them everywhere. Be prepared.

George Smith

About George Smith

George stepped down at the end of 2010 after 18 years as the executive director of the Sportsman’s Alliance of Maine to write full time. He writes a weekly editorial page column in the Kennebec Journal and Waterville Morning Sentinel, a weekly travel column in those same newspapers (with his wife Linda), monthly columns in The Maine Sportsman magazine, two outdoor news blogs (one on his website,, and one on the website of the Bangor Daily News), and special columns for many publications and newsletters. Islandport Press published a book of George's favorite columns, "A Life Lived Outdoors" in 2014. In 2014, George also won a Maine Press Association award for writing the state's bet sports blog. In 2016, Down East Books published George's book, Maine Sporting Camps, and Islandport Press published George and his wife Linda's travel book, Take It From ME, about their favorite Maine inns and restaurants.