I don't know if this was posted on this board before.
Lost to Lyme
By Lindsay Tice , Staff Writer Sunday, March 18, 2007
Bill Chinnock's suicide means Maine's Lyme disease community has lost a champion ... and so much more. But they hope his death will bring help and maybe a cure.
When Jodi Ireland heard last week that Bill Chinnock had died, she was stunned.
When she learned he'd killed himself, she was devastated.
As neighbors in Fairfield, Chinnock had helped her find a diagnosis - Lyme disease - for the crushing fatigue, headaches and numbness that plagued her.
Chinnock, a well-known Maine rock musician, an Emmy-award-winning composer and a founding member of what became Bruce Springsteen's E Street Band, was waging his own battle with Lyme. The little-understood tick-borne illness can leave patients debilitated, in pain, confused and forgetful. Still, he encouraged Ireland. He was hopeful.
"I don't know how he did it, but he always stayed so positive," Ireland said.
Like many Lyme patients, Chinnock - a husband and father - had his ups and downs. But he always seemed eager to help others, eager to tell them they'd be all right. In Maine, he was the Lyme disease community's champion. He was its rock.
And then, late last week, police were called to Chinnock's home. His manager said he committed suicide. In the press, his sister blamed it on the disease.
The news sent the Lyme community reeling.
"I just lost it. I kept saying 'I can't believe he did that,'" said Ireland, a dance teacher now struggling with a Lyme relapse. "I can't believe he gave up." 'Survive and rise above'
Over 23,000 new cases of Lyme disease were reported in the U.S. in 2005, nearly 250 of those in Maine, according to the National Centers for Disease Control. But because testing isn't always accurate and because Lyme can mirror other diseases, experts say there were likely many more new cases than that.
Lyme can cause myriad symptoms, including exhaustion, joint pain and a generally "foggy" feeling. If caught early, experts say, the disease can be cured with antibiotics. But some people aren't diagnosed for years. When that happens, despite long-term antibiotics, their symptoms are chronic and severe, turning them from healthy to bed-ridden without warning.
"It's almost like a death every time you get sick again," Ireland said.
Many Lyme patients go from doctor to doctor, getting diagnosed with every disease but Lyme. Some lose their jobs because they can't keep up with the workload. Others lose relationships because friends and family don't understand the illness.
In Maine, the Lyme disease community is particularly close.
A handful of support groups meet every month, trading help and advice. An online Yahoo group has 175 members who post hundreds of messages each month. For some, it's the only place they can find real understanding.
"Other people say 'Well, you look good.' I hate that expression. Never mind that it took me all day to take a shower. Maybe I can put on mascara by the time my husband gets home," said Gail Richard, a former special education teacher who lives in Livermore Falls.
Chinnock and Ireland both became sick in the late 1990s. They lived down the road from each other and he worked out at a gym she owned with her husband, she said.
"We realized we were both having a lot of the same symptoms," Ireland said.
Exhaustion. Headaches. Heart palpitations. Numbness. They checked for chemicals in the water. He went to doctors out of state. She went to doctors locally.
"Basically his doctors told him he was crazy and mine told me I had fibromyalgia and to go home and cope," Ireland said.
Chinnock eventually saw a doctor in Connecticut, where Lyme was named (after the town of Lyme, Conn.) and diagnosed in the 1970s. He called Ireland, excited, urging her to be tested for Lyme disease, too.
They both had it.
"I will always feel that I owe him so much. He helped save my life," Ireland said.
Chinnock and Ireland went through treatment, including antibiotics, but some symptoms persisted. After Chinnock moved to Yarmouth several years ago, the pair kept in touch.
They each had their ups and downs. Sometimes Chinnock felt well enough to put in a 17-hour day producing a new album. Sometimes he couldn't work at all. But no matter what was going on with his own health, Chinnock sought out others to help.
"So many people are so sick and so few doctors know enough," Ireland said.
He advocated for greater Lyme disease public education. He met with Lyme sufferers, recommending doctors and suggested treatments. Sometimes he simply commiserated, a blessing to patients who felt unheard for so long.
He was constantly upbeat, unfailingly positive.
Already a music legend as a songwriter and guitarist, Chinnock soon became a legend in the Lyme community as well.
"A lot of people knew Bill. He helped a lot of people get diagnosed," said Constance Dickey of Hampden, founder of the MaineLymeDisease support group on Yahoo and chairwoman of the International Lyme and Associated Diseases Society.
Stacey Cimino, a southern Maine resident, met Chinnock after learning she had Lyme. She'd been dealing with the symptoms - headaches, seizures, tremors, breathing and heart problems - for a decade. Doctors told her she had everything from Lou Gehrig's disease to stress. By the time Cimino was diagnosed with Lyme, she was sick and tired of being sick and tired.
Chinnock sent her an e-mail.
"He said 'God has a plan for people. You'll get through this,'" she said.
He offered advice in his letters, telling her about his own experience with a new treatment. He encouraged her, like he encouraged so many people, to keep fighting.
"You will survive and rise above," he wrote. Grief and hope
In 2004 and 2005, Chinnock seemed to be doing well. He'd found an herbal supplement that helped and he was working long hours on a new album, the first in years.
But when Chinnock called to check in with Ireland last year, he told her he wasn't feeling well again. That was the last time she heard from him.
On March 2, Chinnock's live-in caretaker called police to his Yarmouth home. His manager said he committed suicide.
Chinnock was 59.
"This has been a huge emotional blow," said Dickey, the support group founder. "It has rocked the community."
Some now wonder how they can possibly be strong enough to handle the waves of pain and fatigue if Chinnock, their champion, couldn't.
"It broke my heart because I know what he goes through, I know what he went through," said Richard, the former special education teacher. "There are some days you don't want anyone to talk to you or touch you, the pain is so bad. I walk from window to window and look outside. I'm 52 years old and I feel 80."
For a week, online message boards have buzzed with news of Chinnock's death.
"I'm sure many of us here have had thoughts similar on our very worst days. How bad must he have been to take that last final step? My heart breaks for him," wrote one person on Lymenet.org.
"I pray that he has found peace at last," wrote another.
LymeMemorial.org now lists Chinnock among 230 people who have died from Lyme or other tick-borne diseases.
But even as they grieve, Lyme patients say they also have hope: that Chinnock's death will not be in vain.
"I hope someone in Augusta is paying attention," said Dickey.
They want publicity. They want Lyme disease education for doctors and the public. They want passage of a federal bill earmarking $100 million for Lyme disease research and prevention. They want passage of a state bill that forces insurance companies to cover Lyme patients, requires employers to educate workers about Lyme if they work in a high risk area and creates a study of Lyme disease issues.
It's all been missing, they say. And maybe now, with Chinnock's death, it will come.
"I bet that's what he would have wanted, too," Ireland said. Lyme disease facts * Nearly 250 new cases were reported in Maine in 2005, the last year data is available.
* Disease comes from deer ticks.
* Symptoms often begin within days or weeks and sometimes come with a red rash that can look like a bull's-eye.
* More severe symptoms include joint pain, fatigue, muscle aches, headaches, nervous system problems, facial paralysis and a general "foggy" feeling.
* Lyme can mirror other illnesses and is sometimes misdiagnosed as arthritis, Lou Gehrig's disease (ALS), fibromyalgia, chronic fatigue syndrome and multiple sclerosis.
* Treatment is a course of antibiotics, although doctors debate how long treatment should last. Deer tick facts * Both baby deer ticks and adult deer ticks can transmit Lyme disease.
* Baby deer ticks are about the size of a pinhead.
* Adult deer ticks are often shiny, reddish brown with black heads.
* Deer ticks favor trees and leaves, although they can be found on the coast or in grass.
* They must feed on someone for 24 to 48 hours in order to transmit Lyme disease.
* They can also transmit ehrlichiosis, a rare disease with flu-like symptoms, and babesiosis, a malaria-like disease that affects red blood cells.
* Use insect repellents with DEET and protective clothing to prevent tick bites. For pets, use only repellents OK'd by a vet.
* To remove a tick, grasp it with fine tweezers as close to the skin as possible. Pull gently but firmly. It could take several minutes. Do not handle ticks with your bare hands. What you can do * Several U.S. centers test ticks for Lyme disease, including those listed below. Contact each for information on price, response time and proper procedure for mailing.
(401)874-2650 * The Vector-borne Disease Laboratory at Maine Medical Center identifies ticks and can tell whether they have fed long enough to transmit Lyme. It is free.
Ask your doctor or veterinarian to send the tick or do it yourself by sealing the tick in a small, crush-proof container with alcohol. Include the form found at www.mmcri.org/lyme/lymehome.html and mail it to:
Vector-Borne Disease Laboratory
Maine Medical Center Research Institute
75 John Roberts Road, Suite 9B
South Portland, ME 04106
Sources: Maine CDC, the Vector-Borne Disease Laboratory, Lymenet.org, International Lyme and Associated Diseases Society
Posts: 1538 | From Planet Earth | Registered: Jan 2005
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It was posted I'm glad you posted it again. Tomorrow there is a hearing at the state house in Maine for LD 1521. The bill is designed to 'educate doctors' and mandate insurance coverage for lyme diagnosis and treatment. But it isn't very detailed. The hearing is in front of the insurance and finance committee....Bill helped bring attention to Lyme in Maine so hopefully this piece of legistlation will be looked on favorably.
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