Maine Articles: BACK
'Keep going' - Scarborough man won't quit fight against mystery illness
Leslie Bridgers
Reporter-The CurrentMay 4, 2007
Scarborough, MEStephen Pallotta has never liked to ask for help. A few years ago, when he was walking into an office building in Portland, he tripped and fell face first into the doorway. With his legs dangling out onto Exchange Street, Pallotta waited. He knew he wouldn't be able to get up on his own.
He watched men and women in business suits pass him by to get their morning coffee as if he didn't exist. So, he waited some more, until he heard a voice from behind.
“Hey man, are you all right?”
The voice came from a man in a leather coat and ripped jeans, covered in tattoos and the smell of cigarette smoke. He helped Pallotta off the ground, and just as quickly as he had appeared, he was gone. Pallotta, who had gradually been losing his strength and mobility, realized he would be needing help and it would often come from unexpected places.
Over the past three years, Pallotta has gone through test after test, been pricked with innumerable needles and been diagnosed with five different illnesses. Pallotta, 37, has been forced to face his own mortality and has refused to accept the fate that many doctors have tried to hand him.
After working as a paramedic for two decades, Pallotta has had to adjust to receiving help, rather than giving it. Local firefighters and the community in Scarborough, where he has lived all his life, have aided him and his family. In January, the community organized a spaghetti supper and silent auction to raise money to help with his medical bills. On May 12, another benefit will bring together scrapbookers, crafters, knitters and painters to help raise money
Because of all the assistance they have received, the Pallottas felt they needed to share their story so that others would know they don't have to accept a diagnosis they believe to be false. After being diagnosed with Amyotrophic Lateral Sclerosis, commonly known as ALS or Lou Gehrig's disease, Pallotta has now been diagnosed with several other ailments – Lyme disease, Q fever, babesiosis and lead poisoning.
“I honestly feel we owe this to the community,” Diane Pallotta said. She said fears there are too many people that go to the doctor and take whatever diagnosis they are given. “Go everywhere, see whoever you can, look into it,” she said.
After being diagnosed in 2005 with ALS, Pallotta insisted upon getting a second opinion, and then a third. He was told time after time that his history and his symptoms didn't quite match the typical course of disease, but doctors didn't know what else it could be. Pallotta, however, was determined to find out.
Pallotta first started showing signs of illness in August 2004, when his arm was so weak he couldn't brush his teeth. The paramedic and part-time construction worker wrote the symptom off as a pulled muscle from working hard the day before. But other symptoms began to develop, like night sweats, a fever and fatigue. Pallotta made every excuse he could to keep from seeing a doctor.
“I found every other reason, other than something serious,” he said.
In January 2005, he noticed that he started tripping. His gait was off and so was his concentration. Pallotta's wife, Diane, was concerned – it was time he saw a doctor. That March, he reluctantly visited his doctor, who referred him to a neurologist. In two weeks, he was diagnosed with ALS and looking at the end of his life.
ALS is a progressive neurological disorder that affects the nerve cells of the brain and spinal column, causing increasing muscle weakness. The disease is disabling and ultimately fatal. There is no blood test for the disease and only observation over time can confirm the diagnosis.
Though Pallotta knew he could have ALS, he wasn't about to sit back and wait for his life to end until he was sure. After visiting several doctors in Maine, Pallotta traveled to the ALS clinic at Massachusetts General Hospital in Boston, where he was told it would be a while before anything definitive was figured out. He had 15 tubes of blood drawn, nine MRIs, a couple spinal taps and a five-hour electromyography, for which he had six needles stuck in his neck and thorasic spine to test the electrical activity of his muscle cells.
“I pretty much became a pin cushion,” he said.
In October 2005, his doctors told him he didn't meet the classic criteria for ALS and more likely had Lyme disease, a tick-borne bacterial infection that, if left untreated, can cause numbness in the hands and feet, loss of concentration and fatigue.
After being aggressively treated for Lyme disease for four weeks of daily intravenous infusions, Pallotta showed signs of improvement. “Things were looking up,” he said.
But by March 2006, he had gotten worse again. Another 15 tubes of blood later and the doctors at the ALS clinic were suggesting another round of aggressive treatment for Lyme disease – this time for three months. That's when Pallotta's insurance backed out.
According to Pallotta, the company said his symptoms weren't severe enough to qualify him for more aggressive treatment, though his doctors believed that was what he needed. To go through the treatment at Mercy Hospital, Pallotta would have had to pay $50,000. A company that would set up the treatment at his home charged only $12,000, but there was no chance of getting it eventually covered by insurance on an appeal. Pallotta opted to stay at home, and every morning his daughter Sarah, only 9 years old at the time, would administer the treatment - one of the many responsibilities she and her younger brother Jacob, would have to take on to help out their mother, who had to support the family and run the house.
After he started treatment, Pallotta got a call from the firefighter's union in Portland, where he worked as a paramedic. Don't worry about the bills, they said, we're going to cover it.
Throughout his treatment, Pallotta, has accepted help from family, friends and even people he doesn't know.
“I never had to rely on anyone else,” Pallotta said. “I was kind of embarrassed about it.”
But that doesn't mean he's not grateful. Pallotta talked about his sisters adjusting his favorite Italian meals to the special yeast-free diet that he now adheres to, and his fellow firefighters remodeling his bathroom so that he can get in and out of the tub on his own. He talked about the spaghetti supper and silent auction, which over 400 people attended.
“I don't know if I have enough time to thank that many people,” Pallotta said about the overwhelming amount of support he's gotten.
Pallotta's sister, Cathy Koenig, said her brother was always very independent. “He had to swallow his pride,” she said. Koenig told him that people wanted to help and he had to let him. “That's the line we kept using with him: you'd do it for somebody else,” she said.
The upcoming crafting benefit is being held by Tracy Jamison, a woman who used to work with Diane Pallotta and whose son went to preschool with the Pallottas' son, Jacob, now 8.
Jamison said she didn't know that Pallotta had been sick until recently. When she found out, she was immediately inspired.
"I said, 'Oh my gosh, I could do something,'" Jamison said. After meeting with the Pallottas and hearing Stephen's story, Jamison knew she could help.
She arranged to take over the Parish Hall at St. Maximilian Kolbe, the church she and the Pallottas attend, and hold "a full day of uninterrupted crafting" in order to benefit the family.
Pallotta was awestruck by the generosity of his friends and co-workers. Unfortunately, after three months of treatment, nothing seemed to change.
“I was disappointed to say the least,” Pallotta said, but before he lost hope, Pallotta heard from a friend that there was a doctor named Richard Horowitz in Hyde Park, N.Y., who was different from anyone he would find at Massachusetts General. Doctors at the hospital warned Pallotta not to visit Horowitz. They said he would do more harm than good. Though his practices were controversial, Pallotta still wasn't getting better and couldn't help but think that he had no other choice but to see for himself.
“Diane and I had some pretty adult conversations,” Pallotta said of their preparation for the trip. “Let's not go down there with any rose-colored glasses on,” he said they told themselves – they weren't going to expect anything but confirmation of what they already knew.
After a four-hour appointment in December 2006, and 20 more vials of blood, Pallotta was left again to wait for results of the 60 tests Horowitz had ordered to be run on his samples. Pallotta said there was a running joke that pap smear and pregnancy tests were the only ones that weren't being run.
In January, Pallotta got a call from epidemiologist in Portland, Ore., who had gotten a hold of his test results. He had tested positive for Q-fever, a rare infectious disease that affects the liver and the heart. A few days later, Pallotta got a call from Horowitz, who had received the results. Pallotta also tested positive for babesiosis, which, like Lyme disease, is a tick-borne illness, that can cause fever and muscle aches. In testing Pallotta for heavy metals, Horowitz also discovered that Pallotta had lead poisoning.
Pallotta was not overwhelmed by these diagnoses; instead, he was relieved.
“All of these things started to overlap,” he said. “I thought, now I'm starting to get some answers.”
Pallotta was skeptical initially, too. He thought Horowitz might just be telling him what he wanted to hear, and so he had his primary care physician look into the labs that his blood had been sent to. His doctor said they all checked out, and Pallotta has continued working with Horowitz since.
Pallotta is currently on four different antibiotics, a strict, yeast-free diet and several vitamins and supplements. His niece, Allyson Koenig, leads him through physical therapy several times a week and his muscles are starting to get stronger.
Pallotta said that once he caught a glimpse of one of his doctor's notes, describing him as in denial of his diagnosis.
“I don't consider that I'm in denial,” Pallotta said, “I'm just driven to cover all my bases.” Pallotta said he hopes his story will teach others to do the same.
“I started in Maine, I went to Massachusetts, I went to New York. If there's someone in Texas, I'll go there,” he said. “You need to ask questions, you need to do your own research, you need to keep your feet on the ground.”
After all of this, Horowitz said it is still not out of the question that Pallotta has ALS. However, he does believe Pallotta has Lyme disease, Q fever, babesiosis and lead poisoning, and so he will continue treating him for those ailments.
Pallotta has done what he can for himself up to this point, and now he and his family are left to wait and see what happens. In the mean time, Pallotta is spreading his message.
“If you're not finding the answers you want, keep going,” he said, and if people want advice from him about who to see or where to go, he's happy to help. “Anything I can do to shorten the learning curve, it's well worth it,” he said.
Based in Westbrook, Reporter-The Current Leslie Bridgers can be reached at 207-854-2577 or by e-mail at lbridgers@keepmecurrent.com
Youths tell of difficulties
Jessica Alaimo, Staff Writer
Sun Journal
Augusta, Maine
Wednesday, April 11, 2007
About 40 people testified Tuesday before the Legislature's Insurance and Financial Services Committee regarding a bill to treat, insure and prevent Lyme disease.
Here are excerpts from written testimonies:
Nathan Fitzpatrick, 11, of Rumford said his entire family has Lyme disease. He said he had it since birth, passed down from his mom, Lynn. He wasn't diagnosed until he was 8.
"I think it may be harder for a child in school who knows they have Lyme than it is with someone who doesn't know they have Lyme because they are worried what may happen to them.
"I was born with Lyme and I know how it feels, doctors and school teachers or nurses telling you you're fine when you have strep throat, ear infections and high fevers. . . .I tire much more easy than any other child I know without Lyme.
"My body aches often, and I just don't feel well. I lose my breath and don't get it back fast at all. I don't have it in my brain yet, because my mom has brought me to Lyme specialists. I hope it stays that way. I want to be cured and I know others do too. Please help all of us through proper education," he said.
Alana Kelley, 17, and her sister Amanda, 15, of Wells also come from a family affected by the disease.
Alana wrote:
"I was diagnosed with Lyme disease about a year ago, but the doctors didn't want to test me because I had very few symptoms. It started with headaches everyday, progressing to chest pain and joint problems. I saw a primary care doctor, an orthopedic doctor, a heart specialist and an eye doctor. No one offered a solution to my problems except my eye doctor, who suggested I be tested for Lyme disease because she had family members with it.
"With the history of Lyme disease in my family, I was finally tested and it came back positive. Thankfully, my mother knew to have me tested out of the state of Maine because of our experience with bad testing here. After seeing a doctor that understood the disease, I was treated and am doing much better."
Amanda wrote:
"I have had Lyme disease since I was young. I am only 15 now, but years ago I was sick, and it hasn't changed much. To be able to get the medicine we need without the stress would be amazing. We could focus on trying to heal ourselves rather then worrying about getting money or whether or not we can keep our house. We should be able to live our lives as best we can without the worry of getting sicker because no one would help us."
Courtesy: www.lymeinfo.net
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Lyme sufferers support bill
Jessica Alaimo, Staff Writer
Sun Journal
Augusta, Maine
Wednesday, April 11, 2007
Chris Smith has Lyme disease, and Tuesday she was having a bad day.
The Mechanic Falls resident sat in a crowded room at the State House, struggling to stay awake. When her name was called, she had three minutes to tell the Insurance and Financial Services Committee about her struggle with the tick-borne disease, and why committee members should support a bill to help provide education and insurance coverage for sufferers.
Smith clutched the podium, shaking as she told the panel her plight.
"I continue to try to keep going because I don't want to become crippled," she said.
The bill is aimed at slowing the disease and addressing the difficulty people have in obtaining a diagnosis, sponsor Sen. Bruce Bryant, D-Dixfield, said. It would require insurance companies to cover services related to the diagnosis and treatment of the disease.
The bill would also require employers who supervise people in high-risk situations to educate their employees. It would require the Maine Center for Disease Control and Prevention to study the incidence of the disease and report to the Legislature by the beginning of next year.
Tuesday's hearing will be followed by a committee vote Friday on a proposal to send it to the House and Senate for votes.
There were 237 cases of the disease in Maine in 2005, and the number rises each year, Bryant said.
Lyme disease is a bacterial infection spread by an infected deer tick's bite to humans and animals. It causes skin rashes, flulike symptoms, joint pain and fatigue, and it affects the nervous, cardiovascular, gastrointestinal and immune systems, Dr. Beatrice M. Szantyr of Lincoln said. It can be transmitted through pregnancy.
"I can't do things I used to do," Smith said. "Some doctors said that's because of age. That's not true."
Health insurance companies, proponents of the bill said, would only provide up to 30 days of treatment. Those with the disease said they needed more. Much more.
Many said they spend thousands in insurance company money due to misdiagnoses. Many doctors did not want to acknowledge the disease, so instead told them they had multiple sclerosis, lupus or depression. Some said they went out of state for help.
Smith said she started having symptoms five years ago. After going through 13 doctors in three-and-a-half years, she went to a Lyme clinic in Kennebunkport, where she was diagnosed with the disease.
The year she started having symptoms, five members of her family died.
Most doctors wrote her problems off as depression.
She said she has shelled out $10,000 from her own pocket.
Smith will see her doctor today, seeking some antibiotics. She said she does best when she is on medication.
A few people testified against the bill, many disagreeing with the language.
The Maine Merchants Association submitted testimony strongly opposing the measure because of the possible increase in insurance premiums.
"We have been convinced, and remain so, that the two dozen or so mandates enacted in the past have added several percentage points to health care costs," the testimony read, and "have contributed significantly to the affordability crisis Maine is experiencing."
Smith, a widow, said her biggest fear is that she'll fall and no one will be around to help her. Her grown children are very concerned.
She said she has started seeing a male friend, who has helped her get through life with the disease.
"Now I feel like I have something to live for," she said with a smile.
Dan Noble of Norway told the committee a similar story, saying he even went to New York seeking treatment. He wore a bright green shirt that read "Ticks suck."
"It's been something fierce," he said.
Courtesy: www.lymeinfo.net
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© 2006 The National Lyme Disease Memorial Park Project
