'Keep going' - Scarborough man won't quit fight against mystery illness

By Leslie Bridgers
Reporter-The Current

SCARBOROUGH (May 4, 2007): Stephen 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.



Stephen Pallotta of Scarborough is surrounded by his family, clockwise, son Jacob, daughter Sarah and wife Diane. Suffering from as many as four ailments, Pallotta said he was “driven to cover all my bases” in getting a diagnosis. Pallotta said he hopes his story will teach others to do the same. (Photo by Rich Obrey)



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.







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Based in Westbrook, Reporter-The Current Leslie Bridgers can be reached at 207-854-2577 or by e-mail at lbridgers@keepmecurrent.com.
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