Lyme disease Author’s book offers hope to other sufferers

March 27, 2011 at 12:00a.m.

MINERAL RIDGE

How do you deal with symptoms of Lyme disease, being misdiagnosed for several years and watching your life and health slip away?

If you’re like Janet L. DeCesare, you share years of such trying circumstances in a memoir and title it, perhaps most befittingly, “Ticked Off.”

DeCesare, 54, spoke recently from her Austintown-Warren Road home about “Ticked Off” (Tate Publishing & Enterprises LLC of Mustang, Okla., $17.99), which chronicles her physical, psychological and financial struggles with the infectious tick-borne viral disease while providing hope to sufferers.

“I was slowly deteriorating,” recalled DeCesare, who saw the first signs of trouble in 1995, when a circular, scaly rash appeared on her right foot.

Despite the topical creams she used, the rash increased in size, and it wasn’t long before pain, extreme fatigue, bronchitis, pneumonia, respiratory problems and cognitive difficulties set in.

Initially DeCesare was diagnosed with ringworm, then was told she suffers from chronic fatigue syndrome. It took 13 doctors, three hospital visits and $40,000 before a physician one of her sisters got her in touch with came up with the correct diagnosis and unraveled a four-year mystery, she explained.

In her book, DeCesare lists 46 symptoms of the illness, nearly all of which she had. They include twitching of facial and other muscles, a stiff jaw and neck, unexplained hair loss, sexual dysfunction, decreased mental capacity and confusion, continual infections, disorientation and mood swings.

In addition to the adverse health effects, the disease impacted her mentally and emotionally, which made it nearly impossible to work. As a result, she lost five jobs, including those in a hospital’s medical-records department and as a bank teller, DeCesare said, adding that she also had to cope with the stigma.

“I was too embarrassed to share with my family what I was experiencing,” she recalled. “I felt like a stranger in my own home.”

Staying focused on the job and elsewhere proved daunting, she noted. DeCesare recalled having once fallen asleep while at a red light, becoming increasingly paranoid and losing multitasking capabilities.

After receiving the proper diagnosis, DeCesare’s dark days were hardly behind her. She was given antibiotics intravenously but developed an allergic reaction, then was later told a long-term battle awaited her.

Nevertheless, in 2003 DeCesare started seeing Dr. William Schneider, a Warren-based licensed naturopathic physician she credits with helping her return to a more normal life. Thanks to Schneider’s holistic approach, healthy doses of antibiotics, natural supplements and extracts, and a deep faith in God, DeCesare says she’s about 80 percent recovered.

She noted that people with Lyme disease can become angry and bitter or “be a blessing to someone else.”

“You only go around once, so take in the view, enjoy your surroundings, get involved and take your mind off your problems,” she advised.

DeCesare also encouraged those with a diagnosis to find a doctor willing to listen, accept others’ help, keep a journal and take one day and one step at a time.

“It has been a long, difficult and bumpy road,” DeCesare said, adding that she also feels the illness warrants greater attention.