The Miami Herald
Author: NERY YNCLAN, nynclan@herald.com

Fern Leitman lies on a large foam cushion. Her husband places a pad on her back and begins to expertly strike her, with hard quick blows, until he has covered her entire back. If he has been successful, Fern will expel some of the virulent liquids eating away at her lungs.

The respiratory therapy Philip Leitman has been forced to learn is but one of many rituals the couple perform every day, without fail, to keep Fern alive. The needles, the IVs, the piles of pills, the catheters hanging from Fern's chest - it's so second-nature to the Leitmans that they chat and smile with guests between injections as if their world were right.

"If you don't laugh, you cry, so we laugh as much as we can," says Leitman, a South Miami-Dade developer who has persuaded the state and the American Lung Association to join his crusade.

Fern has a severe case of nontuberculous mycobacteria (NTM) - a disease carried in soil and water and most often spread in showers and hot tubs. It thrives in warm, moist places, and Florida is its No. 1 home in the United States. NTM strikes mostly thin, Caucasian women but is not considered rare - rather, it's considered under-diagnosed. It can take years to figure out that the bouts of bronchitis and pneumonia are something more insidious, and it usually takes many costly tests to find it. And all the while, the bacteria can be eating away at healthy lung tissue.

Such was the case with Leitman. The experience has driven her husband to create an elaborate website (ntminfo.com), raise funds, organize a series of lectures by out-of-state specialists and spearhead the mailing of 26,000 color pamphlets this week to doctors across South Florida.

The American Lung Association of South Florida, which raised money for the mailing, and the state credit Leitman for getting NTM on the front burner.

"It's people like him that make things happen," says Dr. David Ashkin, medical executive director of A.G. Holley Hospital, a major tuberculosis center in Lantana. "Our interest peaked when Philip Leitman came to us and said he had to go out of the state to get expert care.

AN INSPIRATION

"People get called on for different reasons, and unfortunately he has because of his wife. And when you see someone like her, it rips your heart because she's been through so much. Both of them are an inspiration."

Based on referrals and the nature of the disease, Ashkin says, his agency estimates there are thousands of NTM cases in the state. They don't have an exact number because it's not a "reportable" contagious disease like tuberculous, a second cousin to NTM, and most cases are being treated by private doctors. But a study this year looking at patients discharged from all Florida hospitals found the incidence of NTM to be 10 times greater than that of tuberculosis.

Leitman, now 56, began getting seriously ill after Hurricane Andrew. She had repeated pneumonia, felt horrendous fatigue, lost coloration and weight. She received numerous treatments, but the problems kept recurring.

The Leitmans finally found their answers at the National Jewish Medical & Research Center in Denver. Opened in 1899 to treat tuberculous patients, the hospital is considered a top institution for respiratory asthma, immunology, emphysema and NTM.

It was there Leitman had part of her left lung removed in 1996. She almost didn't make it.

"Doctors told her, it's time to call your kids," says Leitman, who still gets emotional thinking about the days following the surgery. "That's as serious as I ever want to see it."

He raised money to get the Denver doctors here for instructional seminars to reach specialists and general practitioners in Florida, the front lines in treating people who might be undiagnosed.

MD PUZZLED

"What gets me up in the morning and here on weekends is to figure out why it's developing in women like Fern Leitman," says Dr. Michael Iseman of the National Jewish Medical & Research Center. "The mycobacteria is pretty widespread in the environment, in the dust, soil, water, and presumably, I would project everybody who lives in Florida is exposed to some of the organism every week, if not every day."

Iseman says he and his colleagues are unsure exactly how the bacteria select victims, but he can say his patients - 85 percent of them women - tend to share one or more characteristics: slight scoliosis (curvature of the spine); a sternum that bows slightly inward between the breasts; mitral-valve prolapse, a fairly benign heart abnormality; and family history of lung disease like emphysema or bronchiectasis.

The treatment usually requires at least 18 months of powerful antibiotics. Many of the strains are resistant to drugs, and patients often can't tolerate or experience toxic effects from the intense medications. Those hit with the hardiest of the pathogens may need antibiotics the rest of their lives. Sometimes the infection kills.

Iseman says that when an extensive study was done with military recruits between 1958 and 1965 to find where the bug was most prevalent, it showed that 90 percent of those who lived in coastal communities had skin exposure to the organism. Recruits from Nebraska, one inland example, showed only 5 percent exposure.

"It told us that it's the Southeast, where it's warm and moist, that these organisms were growing in profusion," says Iseman. "But now we are seeing cases all over North America, and it's appearing in frequency."

WATER THEORY

In decades past, the organism seemed to strike mostly older men in their 70s who had been smokers or coal miners. Iseman has theories for the dramatic shift in victim - including a change in water treatment.

"Thirty-five years ago, before the OPEC oil crisis, institutions like hotels and hospitals heated their water at 165 degrees and homes heated at 145. Now, to conserve energy, we insulate the pipes and cap the heating at 125 or less - 125 degrees is fine for mycobacteria."

He also says a shift from bathing to showering might explain why it has spread rapidly beyond the Southeast.

"We changed our hygiene practices from bathing in the tub to standing in the shower," says Iseman. "The organism needs to be aerosolized to enter the lungs. That's why we're talking about enclosed hot tubs and showers."

NTM also can be a danger in waterfalls and indoor pools that haven't been used in some time. The bacteria thrive in the slime in pipes and standing water.

Doctors fall short of warning thin, Caucasian women with family histories to stay clear of a shower's mist.

"We need systematic and quantitative studies to determine the risk. Until then, I would stop short of making recommendations," Iseman says. "We need to make physicians more aware, and we need an intelligent appreciation that there may be some issues surrounding our water, and hopefully in the near future we can figure out what to do to avoid this infection."

Iseman has high praise for the Leitmans' efforts to get out the word.

REMARKABLE PEOPLE

"They're two of the most remarkable people I've ever met," he says. "In the midst of Fern being relentlessly ill and taking the most complex treatment imaginable for six years and for them to still have the humanity and the concern to devote themselves for this public awareness is above and beyond the call."

Word has spread that they are a source of information and moral support. They counsel dozens of patients and get calls from doctors wanting to know more.

For that, Zelda Rosenthal of North Miami Beach is eternally grateful. She says it was Philip Leitman who insisted she get on a plane for Denver.

"It's been 14 years since it started," says Rosenthal, 66, grandmother of 10. "I had the coughing, the pneumonia, the exhaustion. I went to doctor after doctor, and nobody knew what was wrong with me. They said it might be something with my heart, then they said it was my thyroid. And as it went on what they really thought was that I was nuts."

When Philip Leitman heard Rosenthal had symptoms like Fern's, he called her. After two years of intense antibiotics, Rosenthal is feeling well.

"I have never met anybody like him in my life. He knows more about this disease than most doctors," Rosenthal says.

Says Lauri Stuart of the American Lung Association: "It's his passion to help anyone he can to avoid the suffering his wife has gone through. He lights up when he knows people have gone to his website."

Leitman prefers to credit his wife of 19 years: "No matter how sick she has been, she's always asking how other people are doing or talking to other patients on the phone. She's incredible."

As Leitman organizes more information materials in his home office, he explains his commitment to helping others:

"It actually helps us through Fern's illness," he says. "It gives some meaning, some reason to her being ill and it's really positive for both of us.

"My only wish is that I could help her."

Copyright (c) 2002 The Miami Herald

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