Medical Mysteries

Nurse solves mysterious ailment that puzzled orthopedists, oncologist

John Gordon, whose father and father-in-law were doctors, says one reason for his long and expensive travail is that he
John Gordon, whose father and father-in-law were doctors, says one reason for his long and expensive travail is that he "was too good a patient." (Mark Gail/the Washington Post)
By Sandra G. Boodman
Special to The Washington Post
Monday, September 27, 2010; 8:42 PM

Looking back, John Gordon thinks that things might have been different had his office not been located in a Montgomery County high-rise that also houses many medical offices.

If he had been required to travel for appointments, tests and treatments, not just punch an elevator button, Gordon believes he might have questioned the doctors who made, then discarded, increasingly exotic and frightening diagnoses, including a rare cancer. He could have avoided two unnecessary knee surgeries and dozens of physical therapy sessions, as well as acupuncture and other useless and sometimes painful treatments that cost thousands of dollars.

"I was too good a patient, for reasons I can't explain," said the 54-year-old president of a commercial real estate firm, whose father and father-in-law were doctors. In the end, it was a basic query by a nurse, not the acumen of five specialists, that led to the correct diagnosis of a common malady.

"If you don't ask simple questions, you screw up," Gordon said. "I see that in my business all the time."

Gordon's problem surfaced in May 2007, shortly after he and his wife, Christine, returned from a trip to New Mexico and Arizona to celebrate their 20th anniversary. The couple had taken a hike in the steep canyons around Sedona. After they returned home, Gordon, an avid tennis player, noticed that his left knee was swollen. He assumed he had twisted it on the hike.

Several weeks later, when his knee failed to improve, he consulted an orthopedist in his building, who recommended physical therapy. "It was very easy for me to go to PT," Gordon recalled. "I'd just pop up in the elevator."

But within weeks it was clear that twice-weekly PT sessions were not helping. Gordon said his knee was more painful and "super hot - you could feel the heat through my pants leg." After his orthopedist drained yellowish fluid from the knee, he asked Gordon if he had a history of gout, a kind of arthritis that occurs when uric acid accumulates in a joint. Gordon continued going to PT and received two cortisone shots, which helped temporarily, but his knee grew so stiff he was forced to walk with a cane.

By November, the orthopedist, stumped because gout seemed unlikely and an MRI scan revealed no torn ligaments or cartilage that might explain his pain and swelling, recommended exploratory surgery. In December 2007 the doctor operated and told Gordon he had a partially torn meniscus, a common injury involving cartilage. The surgeon repaired the cartilage and predicted Gordon's knee would improve.

No better after several months, still in pain and unable to walk easily, Gordon made an appointment with a physiatrist, a doctor who specializes in rehabilitation and pain management. The new doctor's first thought was that the heat and swelling might indicate an infection. Then Gordon recalls the doctor saying, 'Nah, they would have diagnosed that.' " He advised Gordon to undergo acupuncture, which didn't help, either.

After a second MRI pointed to a condition called pigmented villonodular synovitis, which causes an overgrowth of tissue for no apparent reason and is treated with surgery, Gordon switched orthopedists.

The new doctor recommended surgery and on May 20, 2008, Gordon was back on crutches again after undergoing his second knee operation in seven months. The surgeon ruled out villonodular synovitis, but told Christine Gordon that he was worried among something more serious.

There was far too much abnormal tissue in and around the knee, he told Gordon while her husband was in the recovery room. One possibility was sarcoma, a type of cancer; in the worst case, her husband's leg would be amputated. The doctor referred John Gordon to an orthopedic oncologist and an infectious-disease specialist, and the couple waited several agonizing days for results of the tissue biopsy. It was negative.

The infectious-disease specialist took a detailed history and zeroed in on Gordon's trip to the Southwest, which had preceded the problem.

"I think I know with 95 percent accuracy what you have," Gordon recalled him saying. He suspected Gordon had contracted valley fever, a sometimes deadly fungal infection caused by an organism found in soil in the Southwest. The doctor prescribed two weeks of the maximum dose of a potent antifungal drug.

The only thing the drug did was to make Gordon feel weak and very nauseated. His knee was unimproved, and tests showed he didn't have valley fever. Gordon said the infectious-disease specialist was stumped and prescribed an antibiotic instead.

But a week later, in June 2008, the doctor called back. Gordon said he reported that during a staff meeting at which his case was being discussed, a nurse asked whether Gordon had ever been tested for Lyme disease. Had he? the doctor asked. Gordon told him that he hadn't and that no one had mentioned it. The doctor immediately faxed over an order for the test, and soon afterward Gordon rode the elevator down to the medical lab in his building.

The results were unequivocal. Two tests for Lyme were positive; one showed the exposure had occurred many months earlier. Gordon's knee problem was the result of Lyme arthritis, which develops long after the infection and affects joints, particularly knees.

Lyme disease, a bacterial infection caused by a deer tick bite, was first recognized in the mid-1970s after researchers began investigating the unusually high incidence of arthritis in residents of Lyme, Conn. The first manifestation of the disease, according to WebMD, is typically a bull's-eye rash near the site of the bite. Early symptoms include fatigue, stiff neck and muscle aches; the infection is treated with doxycycline, an antibiotic. If untreated, sufferers can develop recurrent episodes of painful joints that can last a few days to many months. Some develop Lyme arthritis, which is sometimes permanent.

Gordon was stunned. How, he wondered, could this have been missed by so many specialists? And how did he get Lyme disease?

A few weeks later, while sitting in the office of Adriana Marques, an infectious-disease expert at the National Institute of Allergy and Infectious Diseases who is studying the natural course of Lyme disease, he got an answer to the second question.

Gordon liked to walk his dog near his home in Glen Echo, in a park thick with deer. He often wore shorts and not infrequently contracted poison ivy. So, he said, it is possible he was bitten by a deer tick but never noticed the rash or mistakenly attributed it to poison ivy.

How did so many doctors miss it?

Marques said she has seen patients whose Lyme diagnosis was delayed, but none for as long as Gordon.

"I think they just didn't think about it and went down a different road," Marques said. A simple blood test or an analysis of the knee fluid would have revealed the infection, but apparently neither was performed.

Gordon said both orthopedists were skeptical that Lyme disease was the culprit even after he told them that tests had confirmed that diagnosis. "They said it didn't make sense to them," he said.

Marques disagrees. "In his case there is no evidence he had anything other than Lyme disease," she said.

Gordon, who took several weeks of doxycycline and is enrolled in Marques's study of the disease, said that his knee is much, but not completely, better. He is back to playing tennis but still has some residual stiffness and impaired range of motion, which is probably permanent.

Early on, he now believes, he should have consulted an internist "and gotten an ally to deal with the experts." But, he said, after having a serious medical problem several years ago, it was his habit to go directly to specialists.

"I blame myself" for not being more skeptical, he said, adding that he remains grateful to the nurse who asked the obvious question that led to his diagnosis.

"All that was needed," Gordon said, "was a simple blood test. What was amazing is that so many doctors couldn't see what was right in front of them."

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