“It’s awful,” said van Es, 87, who says the burning is worse than the taste, which she likens to “sucking on a penny.”
Her daughter Karen van Es says that her mother’s problem has taken a toll on both their lives. For nearly eight years, she has taken time from her job at a Northern Virginia veterinary clinic to ferry her mother, who lives independently in a condominium in Lewes, Del., to doctors in Delaware, Philadelphia and Washington.
She also has contacted specialists in Florida and Canada hoping one would propose an effective remedy for an ailment that took more than a year to diagnose and has so far eluded treatment.
“She tells me, ‘I just feel rotten all the time,’ ” said Karen van Es, 63, an only child who speaks to her mother every day and sees her often.
“My mother has lost confidence as a result of this,” Karen van Es said, adding that she often feels helpless and frustrated about not being able to do more.
“She’s got a strong heart, good blood pressure and she’s mentally sharp as a tack. But it’s just slowly eating her away.”
Sounds like reflux
In January 2005, when Josephine van Es — the name is pronounced “van-ess” — mentioned the metallic taste and burning sensation to her internist, “he looked at me like I had three heads,” she recalled.
Because the problem seemed to start with a burning in the back of her throat, the doctor suspected gastroesophageal reflux disease (GERD), and referred her to a gastroenterologist. He concurred and prescribed medicine.
But the anti-reflux drug did nothing to ease the pain or diminish the metallic taste, which were sometimes accompanied by severe nausea. An endoscopy performed by the gastroenterologist a few months later ruled out GERD.
Perhaps, Karen van Es thought, the problem wasn’t medical but dental. In addition to the burning and bad taste, Josephine van Es noticed that her mouth seemed unusually dry. After a thorough dental exam found nothing, her dentist suggested she use a rinse to alleviate dry mouth and sip water frequently. Neither helped.
“To put it bluntly, it’s a b----,” she said, adding that she grew increasingly desperate about her situation. She had survived cancer — her thyroid was removed when she was in her 30s — and had lost most of her sense of smell after a severe case of flu about 40 years ago. But nothing had prepared her for this.
In 2006, an ear, nose and throat specialist noted that except for a slightly swollen tongue, he couldn’t find anything wrong. He recommended further testing for Sjogren’s syndrome, an immune-system disorder that causes dry mouth, as well as for Lyme disease and rheumatoid arthritis, which can accompany Sjogren’s. Tests for all were negative.
Because van Es had lost more than 20 pounds, her internist ordered abdominal and pelvic CT scans to check for a tumor, as well as an MRI scan of her brain. All were clear. The MRI found only “relatively subtle evidence” of sinus disease “of doubtful significance,” according to the radiologist’s report.
Van Es was determined to keep looking for something that might help her mother. “I was taking time off and driving her to different doctors in Delaware, Philadelphia, D.C. — anyone we thought might help,” she recalled.
It was clear that Josephine van Es had become depressed, although doctors did not consider her mental state to be the underlying cause of her problem. Various doctors prescribed antidepressants, but most of the drugs just made her groggy or loopy and did nothing to alleviate the scalded feeling or metallic taste.
“My mother had been a social butterfly” her daughter recalled, but she began withdrawing, avoiding social situations with her friends, especially those that revolved, as many do, around food.
Diagnosis of exclusion
By January 2008, mother and daughter were in Philadelphia, seeing a dental specialist at the University of Pennsylvania. After reviewing the stack of lab tests and scans, the specialist concluded that Josephine van Es’s symptoms were consistent with a poorly understood condition called glossodynia, or burning mouth syndrome, which most often affects post-menopausal women.
The cause of the syndrome, which can appear suddenly, is unknown, according to the National Institute of Dental Care and Research.
Linda Bartoshuk, a taste researcher at the University of Florida and an expert on the syndrome, said that it is a diagnosis of exclusion: Other conditions that can cause similar symptoms, such as Sjogren’s and Type 2 diabetes, must be ruled out first.
Most scientists believe that the problem may stem from damage to the nerves that control taste. The ability to taste diminishes after menopause, when it becomes more difficult to distinguish substances that are bitter.
Luckily, burning mouth is “quite rare,” said Bartoshuk, who has evaluated more than 75 people with the problem, which affects “supertasters” — those born with a heightened sense of taste because they have more tastebuds than most people.
One treatment that has proved successful is a very low dose of clonazepam, an anti-anxiety medicine that diminishes nerve fiber activity.
A small study in 1998 by Toronto dentist Miriam Grushka and others found the drug worked for 70 percent of patients; earlier this year, another small but more rigorous study confirmed its effectiveness. For others, paradoxically, diluted capsaicin, the ingredient responsible for heat in hot chili peppers, can desensitize a pain signal chemical in nerve cells. Other patients find relief by chewing sugarless gum, sucking on ice chips and avoiding highly spiced or acidic foods.
Although chewing sugarless gum has made Josephine van Es ’s mouth less dry, nothing else has helped.
Her daughter contacted both Bartoshuk and Grushka but found that her mother had already tried the treatments they recommended, including clonazepam and capsaicin.
“Unfortunately we don’t know what to do” for patients if clonazepam doesn’t work, Bartoshuk said. “We desperately need more research on this.”
For the past few years, Josephine van Es has been seeing a psychiatrist, who has helped her devise a routine to manage eating, an activity she dreads.
“I sit in the front of the TV and just poke it in,” said van Es, who has lost about 30 pounds in the past eight years. Her diet is unvarying: Breakfast is thin oatmeal and fruit (“I call it gruel”), lunch is yogurt and Ensure, and dinner is broccoli florets and a small chicken breast submerged in applesauce. She also eats ice cream twice a day and has found that drinking is less painful than eating.
“If she was lactose-intolerant, she’d be in trouble,” Karen van Es said, referring to an inability to digest dairy products.
Meanwhile, mother and daughter are trying to manage as best they can. Karen van Es is on the lookout for anything that might help her mother. “We’ve done everything imaginable,” she said.
Josephine van Es says she is most grateful for her daughter’s unwavering devotion. “I could never have anyone better than Karen,” she said. “I pray every day and plead with God to take this away. Nothing’s happened yet.”
Have a medical mystery that’s been solved? E-mail firstname.lastname@example.org.