Medical Mystery: They told her it was flu, but it took years to find the truth
"The important thing is to recognize the correlation between all these symptoms," said the allergist who solved the mystery. Often, he added, "people start seeing all these different doctors, and no one figures it out."
Diane Bates lay on the floor of her bathroom in the middle of the afternoon in April 2012 — 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 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 now 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."
Solution:
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.
Her bathroom collapse two months later led to five days in the hospital. She was surprised to learn she had 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 — 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.
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.
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.
To Bates' surprise, she was not allergic to anything except dust mites. When she mentioned her allergy to NSAIDs to Feng, his interest was piqued.
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.
Bates said she was initially taken aback when Feng proposed the treatment, 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 that the desensitization treatment marked a turning point in her health. 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.