After years of breathing problems, patient finds relief

“I had been struggling with my breathing off and on for fifteen years,” says 73-year-old Mickey Buddingh of Palm Desert, California. “We’d moved to the desert from Los Angeles, but I was still driving back and forth three days a week for my business, and the coughing and breathing just seemed to get worse in the desert.

“I went to the emergency room three or four different times, and was diagnosed at different times with pre-pneumonia or COPD,” she continues. “I’m not young and my father smoked, so I figured I just had a weakness in my lungs.”

Despite treatment with antibiotics and inhalers, her symptoms persisted.

“I still couldn’t breathe and was at the end of my rope,” she says.

A few months later, she consulted with a physician who tried another round of medications, to no avail.

“After three or four weeks, that doctor said, ‘This is not right,’ and sent me to see Dr. Perumbeti at Eisenhower,” Buddingh relates, referring to Anil Perumbeti, MD, Board Certified in Internal Medicine, Pulmonary Medicine and Critical Care Medicine.

“He treated me for a while, and I got better,” she continues. “Then I got worse, better again, then worse again. He took a sputum sample in September 2015, and another in December of that year. He told me then that he didn’t think we had been on the right path [in terms of diagnosis and treatment].

“Let me tell you what we found”

“When I went to see him in January, after about a year of trying to cope, I was feeling pretty feisty because I wasn’t doing better,” Buddingh says. “And he looked me in the eye and said to me, ‘Let me tell you what we found.’”

It turns out that Buddingh had a condition called mycobacterium avium intercellulare (MAI). It’s one of a group of bacteria (mycobacterium avium complex, or MAC) related to tuberculosis. These germs are very common in food, water and soil, and almost everyone has them in their bodies. When someone has a strong immune system, they generally don’t cause problems. But people with HIV/AIDS or underlying structural lung disease are at increased risk.

Buddingh fell into neither of these at-risk categories. But MAC infections also have been observed in a third group of patients without apparent significant risk factors: women over the age of 50 (most commonly over 60), of lower body weight and non-smokers. That fit Buddingh perfectly.

A challenging diagnosis

“This is a challenging diagnosis to make,” explains Dr. Perumbeti. “There are probably 30 to 40 common things that can cause a cough; they’re all very different and involve multiple body systems. We have to work systematically to narrow down what a specific problem could be.

“What makes MAI particularly difficult to diagnose is that it’s a slow-growing organism. It can be colonizing inside the lungs for years before it’s recognized and it’s hard to grow in the petri dish,” he continues. “But through a combination of CT scans and bronchoscopy, we were finally able to identify it in Ms. Buddingh.”

“Apparently, the antibiotics I’d been taking over the years had taken care of some of my symptoms, so I’d get better for a while, but it didn’t touch what I had,” Buddingh says. “Dr. Perumbeti explained the treatment he wanted to start me on, and gave me materials to read.”

Difficult course of treatment

The treatment for MAI isn’t easy.

“It takes a long time to work, and patients must take three different antibiotics daily for six to 18 months,” Dr. Perumbeti says. “There is a small risk of some serious side effects that we monitor for regularly during treatment, including visual, liver and blood problems.”

In addition to Buddingh having frequent checkups and lab tests, he recommended that she take a probiotic to help maintain a healthy balance of the “good” bacteria in her gut during treatment.

“I’m a person who’s hardly ever been to doctors during my life, so a regimen like that seemed daunting,” she says. “And my hematologist cautioned me that the MAI treatment was worse than chemotherapy. But I have children and grandchildren, and felt I had a responsibility to care for myself. So I agreed to do the treatment.

“Well, by about the fourth week of being on the antibiotics, I wasn’t sure I could do it,” Buddingh admits. “I was also doing nebulizer treatments four to six times a day, using three other types of inhalers, and struggling to walk from room to room.

“I continued to get better and better”

“But by the fifth week, my symptoms were gone!” she says. “I could go outside and take a deep breath, and walk around the block. ‘I can do this!’ I thought, and I continued to get better and better. I never had to use another nebulizer after that fifth week.

“I had been so miserable for so long, wondering if I’d ever get well,” she continues. “But Dr. Perumbeti was so good and kind and he kept going to get to the bottom of my illness. I have great respect for him.”

Buddingh remained on the antibiotics for more than a year and after a lengthy discussion with Dr. Perumbeti, they agreed she could stop taking them in early 2017. Today, Buddingh is feeling terrific, and requires no maintenance medication. She must, however, regularly see Dr. Perumbeti and her hematologist to monitor her lungs and blood.

“Because this bug is so challenging, we don’t use the term ‘cured,’” Dr. Perumbeti explains. “It can recur quickly, in many years or never again, which is why regular monitoring is necessary.”

“The first time I went back to see Dr. Perumbeti after my symptoms cleared up, I asked him if he accepted hugs,” Buddingh says.