Darren Waterhouse doesn't remember for sure when he was first bitten by a tick. He thinks it was when he a teenager. He was working outdoors for the summer and became ill. "I became really, really tired, lethargic and achy," he said. His mother took him to the doctor and he was initially diagnosed with mononucleosis. He didn't get any better, and by the time he was 18, he had also been mis-diagnosed with Lou Gehrig's disease and multiple sclerosis as well. Things got worse, and by the time he was 19, he was living at home being cared for by his mom.
"[Lyme disease] was really new. We went to the only doctor in New England at the time that was familiar with Lyme," said Darren. Ever since then, he has had a roller-coaster ride of symptoms, forcing him to seek out many forms of treatment, including acupuncture, herbal remedies, special diets, chiropractic, intravenous medication cocktails - all from the bite of a bug.
Now a father of two in Windsor, at 41 years old Darren's memory is beginning to suffer, he has chronic pain and difficulty walking and his doctors worry about the high blood pressure which is caused by some of his very potent treatments. It has affected how involved and active he can be as a father and husband, and he has depended on his supportive wife to help him through some of the most painful times.
This 25-year odyssey has forced Darren's mother, Bonnie, to become educated about her son's disease. She has attended as many different doctor's appointments as she can. "I have been reading up on it all along," said Bonnie. "What we have found is that people think they are cured if they take the antibiotics," she said. "But the disease can lay dormant for many years."
Lyme disease is carried by ticks in the different forms of bacteria they can transfer. It is named after the town of Old Lyme, Conn., where a cluster of people were diagnosed with the disease in the mid-1970s.
Bonnie keeps a journal of Darren's treatments and appointments with the doctors. She says that the number of those who are suffering the effects of tick-born illnesses (of which doctors think there are now six different kinds) is "equal to the number of HIV AIDS patients there were in the early 1980s."
So, this year, after two decades of standing by and watching her son struggle under the burden of the disease, Bonnie decided it was time to create a forum where people in Connecticut could come together, learn about the disease, receive support and spread awareness of how destructive Lyme disease can be. "People don't have a clue about how debilitating this is," she said.
Her motivation is, of course, very personal. "I've got to get out there and help people understand this," said Bonnie. "I have felt useless – I felt I couldn't help Darren – I felt a lot of anger. I said, 'Enough is enough.'"
Her concerns include the need for better and more affordable blood testing, research on curing the disease and generally educating the public.
Voices Against Lyme Disease CT has established itself as a non-profit in the state of Connecticut and is presently seeking tax-exempt status.
Bonnie Waterhouse hopes that through the organization, she and the group that is forming will be able to provide support to those who are suffering with Lyme disease. She believes by starting a Facebook page, website and blog, she will be able to be part of the effort to gather those affected and bring more knowledge to those who can make decisions in the state.
To visit the group's new Facebook page, go to Facebook.com/voicesagainstlymediseasect.
"You can't always change your circumstances," said Bonnie. "It's how you react to your circumstances that matters."