Karen van Es - Josephine van Es, with daughter Karen, lost 30 pounds and finds eating unpleasant. “I sit in front of the TV and just poke it in,” she says.
The 80th birthday party for Josephine van Es marked two milestones, only one of which was apparent at the time.
Held in November 2004 at her daughter’s house in Rehoboth Beach, Del., the event was a celebration of her longevity, good health and loving family. It also marked one of the last times van Es can remember feeling well and not beset by the pain that developed soon afterward and has left the inside of her mouth feeling perpetually scalded and with a constant metallic taste.
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“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.
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