A woman was told she had the flu, but years later, a doctor diagnosed her with a strange disorder. (Cameron Cottrill/for The Washington Post)

Diane A. Bates lay on the floor of her bathroom in the middle of the afternoon — weak, disoriented and afraid that she might die before someone found her.

Bates had been battling what she had been told was a bad case of the flu for weeks. She hoped a bath might make her feel better, but she had felt wobbly and then passed out while getting out of the tub. Alone in her Seattle-area home, she managed to crawl to her bedroom, grab her cellphone and dial 911.

Paramedics spirited her to a nearby hospital, where doctors determined that she was severely dehydrated; at 90/60, her blood pressure was worrisomely low. Tests showed that the problem was not the flu, but a bad case of pneumonia that had invaded her right lung.

The unusual cause of the pneumonia was a surprise. It also proved to be a key clue that several years later would reveal the underlying reason for the severe respiratory problems that had dogged Bates for more than a decade.

“I had never heard of it,” said Bates, 58, a technical writer for Google who lives in Silicon Valley.

Many doctors are unaware of the disorder, said Charles Feng, the California allergist who made the diagnosis. “The important thing is to recognize the correlation between all these symptoms.” Often, he added, “people start seeing all these different doctors, and no one figures it out.”


Diane A. Bates had been diagnosed with the flu before doctors diagnosed her with a different, strange illness. (Albert Chang)
Feeling bad, then better

In early February 2012, after spending several weeks battling a fever, achiness and exhaustion, Bates saw her internist, who diagnosed the flu and advised rest and fluids. Her fever disappeared, but Bates said the weakness remained, as did nasal congestion — a common problem given years of chronic sinusitis, which she developed in her 40s along with asthma. Soon Bates was contending with a new problem: drenching night sweats.

Bates said that her doctor told her the night sweats were unrelated to the flu and marked the advent of menopause.

“I would have days where I felt really bad, and days when I felt better,” she recalled of the listlessness and fatigue. The night sweats were particularly bothersome. “I would wake out of a sound sleep, totally soaking the sheets.”

She returned to her internist in March. “This is the flu, it can hang on for a while, don’t worry about it,” she remembers the doctor saying about her prolonged malaise.

Bates, who at the time was an independent contractor working from home, said she got through her workday by taking naps.

The previous months had been difficult. In early December, Bates had sprained her ankle. She decided the injury wasn’t serious enough to merit a doctor’s visit and began taking ibuprofen to reduce the swelling and pain. It seemed to work.

But her collapse in April made her realize how accustomed she had grown to feeling sick. “I remember being loaded into the ambulance and thinking that maybe this was the last thing I was ever going to see,” recalled Bates, who spent five days in the hospital.

She was surprised to learn that her pneumonia was not caused by the usual viruses or bacteria, but was classified as eosinophilic pneumonia, a form of the lung infection caused by an increase in eosinophils, a type of white blood cell.

Drugs, including aspirin and other NSAIDs — nonsteroidal anti-inflammatories including ibuprofen — can cause an increase in eosinophils for reasons that are not well understood.

A pulmonologist who saw Bates in the hospital warned her that she was essentially allergic to NSAIDs and should never take them again.

“That was hard,” Bates said, because it left acetaminophen as the only over-the-counter painkiller she could take. Unlike NSAIDs, acetaminophen does not reduce inflammation and is not generally considered effective in treating sinus infections.

Her asthma, which was sometimes hard to control, remained a significant concern. Bates estimates that three or four times a year, she would wind up in the emergency room unable to breathe.

Two years after her pneumonia, Bates moved to Northern California. She hoped the new climate would be better for her health.

Instead, her problems got worse.

'She had all the symptoms'

In December 2015 Bates was referred to Feng. Her ear, nose and throat specialist had recommended endoscopic surgery to alleviate her repeated sinus infections and remove nasal polyps. But first he wanted to ensure that Bates did not have underlying allergies, such as to tree pollen or grasses, which could compromise the effectiveness of the operation.

The allergist performed a workup. To Bates’s surprise, she was not allergic to anything except dust mites. When she mentioned her allergy to NSAIDs to Feng, his interest was piqued.

Her story had a familiar ring. Feng had recently completed his residency at Scripps Clinic in San Diego, during which he had been involved in the care of several dozen patients with a similar profile: recurrent sinus infections, asthma and high eosinophil counts. After he learned that Bates had developed asthma and sinus problems in her 40s and that she became congested after drinking alcohol, he realized “she had all the symptoms.”

Feng strongly suspected that Bates had a poorly understood condition called Samter’s triad — also known as aspirin-exacerbated respiratory disease, or AERD.

AERD, which is believed to affect about 9 percent of adults with asthma, is a chronic condition marked by a sensitivity, which can be life-threatening, to NSAIDs. Some sufferers lose their sense of smell. Most do not respond to traditional treatments for sinusitis, which they typically develop in middle age.

“The immune system becomes overactive,” Feng said, “but nobody really knows what causes it.” Some people undergo sinus surgery to remove nasal polyps, which then grow back because the underlying problem remains unresolved.

One treatment, pioneered in recent years, involves administering aspirin in progressively larger doses under medical supervision. Called aspirin desensitization, the outpatient procedure typically takes two or three days and can alleviate the symptoms of AERD, reducing the frequency of sinus infections and improving asthma control and a patient’s quality of life. Scripps and Boston’s Brigham and Women’s Hospital are known for their AERD treatment programs. (Desensitization is also often used to treat environmental allergies.)

But this treatment also requires that patients take a daily dose of aspirin. Some cannot tolerate it because aspirin causes gastrointestinal bleeding.

Bates said she was initially taken aback when Feng proposed the treatment, fearing it was potentially dangerous.

But after undergoing sinus surgery in April 2016, she changed her mind. “I felt so much better,” she said, and she worried that the improvement might be temporary if she did not address the root cause. Bates said she also spoke with a friend who had successfully undergone desensitization for another condition, which allayed her fears.

After her insurer approved the treatment, Bates scheduled it for December 2016.

She was initially given a baby aspirin, which caused no reaction. That was followed an hour or so later by two baby aspirin, which triggered an asthma attack that Feng quickly controlled. Over the next two days, Feng proceeded to increase the dose until Bates was able to tolerate two 325-milligram aspirin tablets with no adverse reaction. She continues to take that dose every day.

A major improvement

Bates said that the desensitization treatment marked a turning point in her health. In the past 15 months, she said, she has not made any emergency room visits for asthma and has suffered from only one sinus infection, from which she recovered more quickly than before.

“I definitely have a better quality of life now,” she said. “I feel great.”

She finds it ironic that had she not wound up in the hospital with a life-threatening case of pneumonia, she might never have learned of the disorder that had triggered it — and for a decade had made her so miserable.

Even though the experience was “terrifying, I am kind of glad I got it and got diagnosed,” she said.

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