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Monday, September 12, 2005

Lyme disease can strike anywhere

After 50 years together, Nancy Lenoce, 69, could tell something was terribly wrong when her husband, Alton "Al" Lenoce, 73, began to experience mysterious but troubling medical symptoms.

However, it would take almost a full year of sleuthing before he received a diagnosis of Lyme disease.

Now Al is recovering form a harrowing experience he wishes no one else should have to repeat.

He first became aware of unusual symptoms when he woke up one morning and found he had no voice.

He referred to this as, "most unusual for me," and said it started a long chain of events that included consultations with six specialists within 12 months.

He underwent countless tests, blood work and visits to specialists, and his health progressively deteriorated, before doctors finally discovered what was wrong.

Al said the reason he saw so many different kinds of doctors was that no one had any idea what was wrong with him, and the longer his illness progressed, the worse his symptoms became.

A cardiologist, urologists and neurologist were among the many doctors who ordered tests, MRI's and blood work, all of which proved inconclusive.

Meanwhile, Al said pain was the worst of his symptoms. It often was often so severe that he was unable to move and could only scream out in agony.

"I'm a combat veteran of the Korean war," he said. "I know what pain is like. It was very, very intense."

In addition to the extreme pain and loss of his voice, Al said his memory was suffering.

Nancy said Al's memory got so bad there were times where the two of them would be on the way to a doctors' appointment, and Nancy would tell her husband who they were going to see. Only a few minutes later, he would ask her, "Where are we going?"

At one of their appointments at the Veteran's Medical Center in West Haven, the doctor recommended they visit an ear, nose and throat specialist. Heeding this advice, the Lenoces did just that, and learned that 40 percent of Al's left vocal chord had been destroyed by some kind of infection.

Nancy said this was the first time her husband's condition had been referred to as, "damage done by an unknown infection," and that he was tested for Lyme disease at this time.

"We are avid gardeners and for years have been conscious and aware of Lyme disease," Nancy said.

She said the two habitually check each other for ticks after spending time in the garden, and wear long pants and light colored clothes in an effort to protect themselves.

Al's Lyme test came back negative, and the Lenoces would later learn that it takes a while for tests like these to come back positive, which explains the results at that time.

By mid-June, Al's condition had gotten so bad (and was still undiagnosed), that he was confined to the house. In the middle of June, the Lenoces opened their gardens to the public as they usually do, but Al was in too much pain to go outside.

His memory loss and pain were at an all time high, and he was suffering from tremors so bad that at one point, they thought he might have Parkinson's disease. On top of all of that, he had dropped almost 30 pounds, unable to eat much of anything.

"I could not/would not eat, because everything I put in my stomach would cause me pain," he recalls.

In July, the two returned to the Veteran's Medical Center, where a doctor looked at Al's blood work, calling it, "basically, a disaster."

Apparently, Al was suffering from ultra-low levels of sodium and electrolytes (due to the fact that he had been eating next to nothing), and there was too much water in his system. He remembers a doctor saying he was in a "near fatal condition," a term he is not soon to forget.

"When a doctor you know and respect says that, it gets your attention," he said.

All of the doctors' attention had now focused on the sodium deficiency, and Lenoce was immediately attached to a sodium intravenous drip, which he stayed hooked up for most of the afternoon.

The doctors recommended that he eat as many high fat and high sodium foods as possible, and he and Nancy recall going to McDonald's every other day, ordering chocolate milkshakes, something that was unusual for the usually health-conscious couple.

A week later, the Lenoces returned to the Veteran's Medical Center for a check up, where the doctor mentioned the possibility of Lyme disease. Later that day, the neurologist called Al at home and confirmed the diagnosis, strongly urging him to go to a leading Lyme disease treatment center in Stratford.

That same day, he had a catheter implanted next to his heart, which would allow for the influx of ceftriaxone, an antibiotic he refers to as, "the gold standard for Lyme disease treatment."

The following morning, his 30-day treatment cycle began. He said these treatments usually last a half hour or so, with a nurse administering the drug.

After the 30-day cycle, doctors will review his blood work and symptoms. Depending on these factors, doctors will decide whether Al will go through another treatment cycle.

"I turned a corner two, maybe three nights ago," he said. "I turned to Nancy and said 'Honey, I think I'm starting to feel a little bit better.'"

He has begun eating a little bit more and stopped experiencing tremors. He is hopeful for the future but aware he doesn't yet know what permanent damage this past year has done to his other organs.

Both Al and Nancy are passionate in their belief that there needs to be a sense of awareness and concern about the dangers of Lyme disease.

"The state of Connecticut should make it mandatory that every person who is having blood work should be tested for Lyme disease," he said, adding that, "this is a very complex problem."

As for the ways the illness has changed his life, he said he was frustrated about the damper it has put on his physical and creative outlets.

He is especially disappointed over the fact that he lost his opportunity to win big on "Who Wants To Be A Millionaire."

He explained that he had first auditioned a while back and had made it to the next round but was unable to attend last week's audition due to his treatments.

Nancy joked that Al still wanted to attend, but there would have been no way he could have made it all the way into the city by train, even with her standing beside him.

Like they have for the last 50 years, the Lenoces have worked as a team through a very trying year and will remain so as Al continues on his road to recovery and back to his beloved garden.

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