Lyme disease: Learn this lesson from Janet (or me)

A number of years ago I received a letter from an Ohio woman who had read my column regarding my son’s battle with Lyme Disease. We talked a few times, offering solace and encouragement to one another, as she, too, had finally been diagnosed with this tick-borne disease.

Just a few weeks ago, I was surprised to see Janet’s name as the author of a new book, which was receiving lots of attention.

Last week, Janet DeCesare sent me a signed copy of her new book, giving me permission as well as encouragement to share her story with Farm and Dairy readers.

Outdoors lover

Janet was an active woman who enjoyed her job, her family, and loved to garden. It was in 1995 when Janet noticed a round, itchy spot on her right foot after having spent days gardening in her bare feet. She noted that deer also loved her garden, helping themselves to her green beans.

She didn’t give much thought to this rash on her foot, chalking it up to poison ivy from walking with her dogs in the woods and fields around her house. Her doctor took a quick look at it and said it was ringworm, prescribing cream for the rash.

“This is when my troubles began,” Janet writes in the beginning of her book, which covers 12 years of suffering while searching for help from many doctors before finally being diagnosed and treated by a doctor outside of her home state of Ohio, “and this meant my insurance wasn’t going to pay for this,” she writes.

Upon examination, it was this doctor who finally explained the rash on her shins, saying, “You have had Rocky Mountain Spotted Fever at some point in your life.”

He ordered testing, prescribed oral antibiotics and after years of misdiagnosis, pain, crushing fatigue, confusion, slurred speech and rashes, Janet started to feel better.

Be cautious

She writes, “I’ve lived on farmland all of my life. I wouldn’t change a thing about living out in the country. I never actually gave it a thought. I would lie outside in the grass with my girls at night and look up at the stars, walk through the woods with my girls and our dogs, and collect wildflowers in those high prairie grasses and weeds.

“Now I’m more cautious. We have numerous deer that roam all over our property; they visit our pond for drinking water, eat acorns under the tree, and sometimes they eat my flowers and ornamental bushes in my landscaping…. we can respect our beautiful world but be very cautious with it.”

So true

It was the summer of 1998 when my 11-year-old son found a tick on himself after having spent a day of outdoor fun with a friend. My once-healthy son began suffering a myriad of nightmarish symptoms, everything from rashes, joint pain, blinding headaches, chest pain so severe that we spent many nights in the emergency room, extreme confusion, dizziness, night sweats, stomach issues.

The rashes were never the typical bulls-eye rash that is associated with Lyme Disease, so even though we knew he had been bitten by a tick, we were told that he must be suffering from growing pains and hormonal changes. We were passed from one specialist to another as our son’s health deteriorated.

Helpless, frustrated

Like Janet and thousands of others, we did everything in our power to get medical help. Testing often proves unreliable.

It is disheartening that this story of pain and costly frustration is repeated constantly when simple antibiotics early on could treat this disease. Left untreated, it becomes incurable. It is under-researched, overlooked by doctors and media, though its incidence among our population is growing rapidly.

Story needs told

Janet felt this story needed to be told, and covers the physical and neurological pain along with the difficult journey in diagnosis, treatment, recovery of a happy life.

She writes, “Why is Lyme disease on the rise? One theory is from global warming; we have warmer temperatures, increased white tailed deer populations, and urban land developers. We need diagnostic screening for our veterinarians so they can properly identify these vectors. As the tick populations continues to grow and migrate, new diseases are introduced and ticks become more likely to carry and transmit a host of diseases. Unfortunately, I became a host for the ticks, and now I’m trying my best to help prevent you from going through what I’ve had to live with for the past 12 years.