Susan Coleman Morse suffered with Lyme disease for 16 years before it was finally diagnosed in 2012.
The 44-year-old Monroe County woman wishes she had those years back. But rather than waste time wallowing in self-pity, she's formed a support group for Lyme disease sufferers, and is trying to educate the general public about the importance of early diagnosis and treatment.
"Going forward, I want to focus on education, especially with Lyme disease becoming more prevalent," she told The Herald-Times .
For years, the U.S. Centers for Disease Control and Prevention had estimated there were about 30,000 cases of Lyme disease per year, but in August of 2013, it changed its estimate to 300,000 cases per year. From 2003 through 2011, there were an average of 46 confirmed cases of Lyme disease in Indiana, according to the CDC, with the two highest years being 78 in 2010, and 97 in 2011. Over the past five years, Indiana averaged 87 cases of Lyme disease, with the highest total of 101 cases occurring in 2013.
"This is a very complex and controversial disease," Coleman Morse said. "Inadequate testing, disagreement in diagnosing guidelines and treatment and lack of insurance coverage for patients are just a few of the barriers faced by those infected with Lyme disease and associated bacterial co-infections."
Coleman Morse believes she was infected in 1996 by a deer tick bite she incurred while camping near English. She began to experience severe leg swelling, joint pain, bruising, migraines, speech problems and memory loss. She saw half a dozen specialists in internal medicine, immunology and rheumatology -- who suspected she might have such things as lupus, fibromyalgia and rheumatoid arthritis until tests ruled them out.
"There were times when I would wake up and be unable to move because my legs were so swollen," Coleman Morse said. "Someone would have to carry me to the bathroom. It was very frightening. And very frustrating, because I no idea what was wrong with me."
In 2008, she was bedridden for nine weeks due to a malfunctioning liver, speech problems and other symptoms that specialists were unable to decipher. She had to resign her staff position at IU's information technology services, but in 2010 managed to complete her master's degree in informatics at IU.
In the spring of 2012, she suffered another tick bite, this time on her scalp. It produced a rash consistent with Bartonella, a bacterial infection that's a common co-infection of Lyme disease and produces many of the same symptoms. She was treated with steroids, which she says further weakened her immune system, exacerbating her Lyme disease and Bartonella.
"Two weeks after the bite, I was in the emergency room," she said. "I couldn't walk or talk."
Today, Coleman Morse still struggles with hand tremors, joint pain, seizures, speech problems and brain fog. She's being treated by a Lyme disease specialist in Zionsville, who has her taking antibiotics intravenously four times a week at home -- through a port in her right arm.
"I've been taking IV antibiotics for about a year, and it's been the most effective treatment for me so far," she said. "But it's different for everyone. Some people with Lyme disease respond better to oral antibiotics or herbal treatments."
No simple answers
Coleman Morse said there is a lot of disagreement in the medical community about the diagnosis and treatment of Lyme disease.
"Some say it's hard to get and easy to treat, while others say it's easy to get and hard to treat," she said.
She said some medical professionals say 80 percent of those with Lyme disease will get a bull's-eye-shaped rash, while others insists it's closer to 50 percent. The reliability of some Lyme disease diagnostic tests is also questionable, she said.
"In 2012, my son Rowan suffered a tick bite and was given an ELISA (enzyme-linked immunosorbent assay) test that was negative," she said. "But when his symptoms grew worse, I insisted he get a Western blot blood test. It was sent to an independent lab and according to CDC standards, the test showed he had both Lyme disease and Bartonella."
Coleman Morse said several states have passed laws mandating that doctors tell patients that the Lyme disease testing they've received is unreliable. She said Virginia passed a law requiring doctors to tell patients who've tested negative for Lyme disease that they may actually have the disease.
Though there is no vaccine or cure for Lyme disease, symptoms can often be controlled if the proper treatment can be found and administered early.
"It varies from person to person," Coleman Morse said. "My son and I have found that a diet free of sugar, carbohydrates and gluten inhibits the bacteria's food source and also strengthens our immune systems."
Coleman Morse said because Lyme disease bacteria reproduce every 30 days, and because the bacteria can spread
to vital organs, the earlier a person is diagnosed and treated the better the outcome.
"There's a big controversy now about how long the tick must be on you to transmit the bacteria," she said. "For years, doctors said it has to be on you for 24 to 48 hours, but now some doctors are saying there is no safe window."
Coleman Morse said those with Lyme disease often face financial stress, because many of the most effective treatments for the disease are not covered by insurance.
"The guidelines that insurance companies use are established by the Infectious Diseases Society of America, which does not support the types of treatments that Lyme-literate doctors use," she said. "Some have even lost their license for practicing outside the society's guidelines."
Coleman Morse said she spends about $1,000 a month, out-of-pocket, for her IV antibiotics and oral medications. Family and friends have organized some fundraisers on her behalf to help her with those expenses.