WORCESTER – Michele J. Miller had no idea her mother kept journals for years, detailing her silent suffering from the disease that ended her life at 71.
After the 2013 death, Ms. Miller started reading about her mother’s life. In 2007, accounts in Jeanne L. Cloutier’s journals began to change. She started writing about migraines, vertigo, dizziness, heart palpitations and night sweats. Her doctor would tell her it was stress, and prescribe medications. As her physical condition worsened, she was told her symptoms were from menopause.
Her mother isn’t the only one who suffered silently, Ms. Miller said. Many living with Lyme disease are told it is “all in their head.”
“She suffered needlessly from symptoms of late-stage Lyme disease and passed away in 2013,” Ms. Miller said. “When I cleaned out her house in preparation to sell, I found her journals that talked about a lot of isolation with this disease and not really having anyone to talk to and having that support. She knew I had a family and did not want to burden me.”
Ms. Miller said on a trip to Florida in 2011, her mother developed Bell’s palsy, characterized by muscle weakness that causes one half of the face to droop.
“She called me and said ‘Michele, I have a rash on my back and the doctors said I have shingles and need to be put on Prednisone (a steroid),’” Mr. Miller said. “That was the last time I really understood what she told me. In May 2011, she came back with Bell’s palsy, slurred speech and was having trouble swallowing. We couldn’t understand her when she spoke.”
Ms. Miller bought her mother an iPad to “text-talk.” Still unsure of what was wrong, she took her mother to a neurologist, concerned she had a stroke, often associated with Bell’s palsy.
“The chief neurologist in the area looked at my mother’s symptoms through the years and said ‘You have ALS,’ without even doing a blood test,” Ms. Miller said. “My mother wrote in her journal that night it was a death sentence, but questioned it because there was no blood test.”
Ms. Cloutier would go for a second opinion from a holistic physician two weeks later.
After a three-hour appointment and blood tests, she was diagnosed with late-stage Lyme disease which had spread from her bloodstream into her tissues and organs.
She was prescribed a course of antibiotics, but would later write her doctor an apology note because she couldn’t swallow the medications. She would need the aid of nurses to remain at home.
“She had to use a feeding tube,” Ms. Miller said, crying. “It was very sad to the end. We lost her in the blizzard of 2013 in February at the hospital. I had to keep her alive on life support until my brother could get there. He didn’t have a car or a ride and was trying to get the National Guard to bring him.”
Getting misdiagnosed for years masked her mother’s real problem, Ms. Miller said, and the medications only further compromised her immune system. “They made it harder to climb out of the black hole; that is what happens to most people, unfortunately.”
Though furious when she first read her mother’s journals, Ms. Miller said during counseling sessions, her counselor said something to her that would change her life.
“The counselor encouraged me and told me I could be angry the rest of my life and get back at her doctors, or turn it completely around and educate people,” Ms. Miller said. “She said I was at a fork in the road and that, ‘It is for you to decide.’”
Ms. Miller and her husband, Kenneth, now dedicate their lives to raising awareness about Lyme disease and say early diagnosis is key.
In 2014, a year after Ms. Cloutier’s death, the Millers co-founded the nonprofit, Central Mass Lyme Foundation. The all-volunteer organization is holding its third Lyme Disease Conference from 9 a.m. to 4:30 p.m. Saturday at Worcester Technical High School, which will explore the complexities of Lyme and other vector-borne diseases.
“We’re trying to save lives,” Ms. Miller said. “If it is caught early, you have a higher chance of treatment. In late stage, most people diagnosed, it’s in their organs. It attacks your nervous system and the treatment can sometimes kill the patient.”
At the beginning of the first conference, held at Quinsigamond Community College, it was lightly snowing outside. Ms. Miller said she felt it was a sign from her mother, telling her she was doing what she wanted her to do.
Tickets for the conference are $10 online at centralmasslymeconference.com and $20 at the door. Registration starts at 8:30 a.m.
Dr. Kenneth Liegner will deliver the keynote on chronic Lyme disease.