Every Patient Tells a Story

by Lisa Sanders

  “My doctors would let me list my symptoms and they’d send me off for a bunch of tests and when they all came back normal they were like ‘What are you still doing here? We can’t find anything wrong with you so it must be all in your head.’ But these pains I have, this fatigue, this confusion, it’s not in my head. It’s in my body. I needed someone to help me with what was happening to me. That’s when I found Dr. Gaito.”

  By dismissing his symptoms, Will’s doctors, in a very real sense, abandoned him. He didn’t have a disease they knew about and so he wasn’t really sick. This left him vulnerable to a wide range of other practitioners—both traditional and “alternative”—who offer a sympathetic ear, a ready explanation for symptoms, and a confident plan of treatment. These are precisely what Dr. Gaito provided. She listened to Will, validated his feelings, and offered him a compelling narrative of his symptoms—a seemingly solid and substantial diagnosis.

  “Dr. Gaito believes that this is chronic Lyme disease,” he told me. “She’s been treating me for it, and while I’m not all better, I shudder to think what I’d be like if I hadn’t been taking antibiotics all these years. No, I think I’ll probably end up taking antibiotics for the rest of my life and if that’s what it takes, I’m willing.”

  Escape from the Phantom

  Will’s story is the result of a tangled web of factors, at the heart of which lie the unusually complicated and uncertain diagnostic tests used—or not used—for patients with Lyme disease. But whereas Dr. Gaito and Will remain solidly wedded to their belief in the phantom “chronic Lyme disease,” Carol Ann eventually escaped this psychological and medical dead end.

  For weeks Carol Ann took the medicine prescribed by Dr. Davidson. Nausea continued to plague her, but she persisted. Then her symptoms, which at first seemed to be getting better, slowly returned. Davidson changed her to a different dose of the antibiotic and when that didn’t help, to yet another one. With each change, Carol Ann would start to feel a little better, but it never lasted. After months of this Carol Ann returned to Davidson’s office—frustrated and sick. All of her symptoms had come back and the new medicine was making her feel just as nauseated as the old one had. At that point she’d been on antibiotics for over six months and she was—if anything—worse off than she had been when she first came to see him.

  “I’m only sixty and I feel like an old woman,” she told him. “What is wrong with me? If this is chronic Lyme disease, why am I getting worse?” It’s an interesting question, he told her. If this were a persistent infection, he would expect her to get better. So—and he paused—maybe this isn’t chronic Lyme disease after all. Perhaps this is something else. He encouraged her to return to her primary care physician. Perhaps he could help her. Davidson only took care of patients with Lyme disease. He had done all he could.

  Discouraged and depressed, she agreed. Her internist referred her to a new rheumatologist and finally, nearly two years after her symptoms started, Carol Ann walked into the office of Dr. Linda Bockenstedt at Yale School of Medicine. As she sat in the dreary waiting room, Carol Ann wondered if she’d made a mistake. This looked more like a clinic than a regular doctor’s office. There were nearly two dozen patients waiting for any one of a whole string of doctors whose names she’d seen on the door as she came in. Finally she was taken to a small, brightly lit exam room. There were no pictures on the walls, no personal items on the desk. It was as cool and impersonal as a room in a chain hotel.

  That chill left the room the moment Bockenstedt entered. She was tall with light hair and warm brown eyes. After introducing herself, she sat on a metal chair and, looking Carol Ann in the eye, she asked her why she had come. And then she listened—without interrupting—as Carol Ann went through her entire story. She described how she was initially diagnosed with Lyme disease, and the crazy symptoms that followed. She recounted the long unsuccessful treatment with antibiotics and the terrible toll it had taken on her stomach and her body. Now during the day she could barely move her arms, her shoulders hurt, and at night her hips and knees throbbed, making sleep almost impossible. She was tired; she could barely concentrate. Her memory was shot. She felt irritable and lost her temper frequently. Bockenstedt took notes as Carol Ann spoke, and when she was done asked a few more questions to help her parse the puzzling symptoms.

  Bockenstedt then examined Carol Ann carefully, paying particular attention to her hurting joints. Her neck and shoulders were tender to the touch and too stiff to move fully. Her hands, the joints in which are most frequently involved in rheumatoid arthritis and lupus, were supple and without pain. During the examination Carol Ann’s hips and knees were pain-free and had a normal range of motion but she complained that they hurt at night and that in the morning they were so stiff it was hard to get out of bed. The rest of the exam was unremarkable.

  By the end of the visit, Bockenstedt focused on three possible diagnoses. First—and most concerning—was a disease not of the joints but of the blood vessels, a disease known as giant cell arteritis. This disease is most common in women over fifty and attacks large blood vessels in the body. Untreated, it can cause blindness and strokes. The most common symptoms are fatigue, weight loss, and body aches—which Carol Ann had—as well as headaches and jaw pain—which she didn’t have. Still, it wasn’t a disease that Bockenstedt wanted to risk missing.

  Another possibility, and the one Bockenstedt thought most likely, was a common but poorly understood disease of the muscles and joints known as polymyalgia rheumatica, abbreviated as PMR. This disease frequently causes stiffness of the neck, shoulders, and hip joints as well as fatigue and sometimes fevers. One of the most interesting aspects of PMR is that it appears full blown out of the blue. Patients often say that they feel like they came down with a flulike illness that never went away.

  Rheumatoid arthritis was the third possibility—her symptoms weren’t classic, but if not treated, this type of arthritis can cause permanent injury to the joints.

  Bockenstedt explained her thinking to Carol Ann and sent her to the lab to look for evidence of any of these joint diseases and to test again for Lyme disease. She also ordered X-rays of her shoulders, which would reveal evidence of rheumatoid arthritis joint damage if it existed.

  Two weeks later, Carol Ann was again sitting in Bockenstedt’s exam room. Bockenstedt didn’t waste any time: she was very confident that Carol Ann had polymyalgia rheumatica. The X-rays ruled out rheumatoid arthritis and the blood work showed no signs of a bacterial infection—by the Lyme bacteria or any other type of bacteria.

  Somewhat ironically, there is no test for polymyalgia rheumatica. Instead, tests are used to rule out other possible candidates, and a diagnosis is based on these tests and the patient’s constellation of symptoms. Bockenstedt explained why she felt the evidence for PMR was compelling. Carol Ann had a classic presentation of the disease. To begin with, women are four times more likely to get PMR than men. Carol Ann was older than fifty—the age group at highest risk of the disease (one of every two hundred women over fifty get PMR). Her symptoms came on suddenly and felt like an infection. Her pain was located primarily in the large supporting joints of the body—the shoulder and neck, hips, and knees. The spine and the smaller joints of the arms and feet are typically spared. And, of course, the X-rays and blood tests showed no signs of other rheumatologic disease or infection.

  Carol Ann took in all of the information without speaking. If this was really true, then Dr. Davidson had been wrong and she had endured those months of nausea needlessly. She wasn’t quite ready to trust this new diagnosis, even though she trusted Bockenstedt. She had also trusted Davidson. Plus she had read on the Internet that prednisone—the medication that Bockenstedt was suggesting—could worsen a hidden infection, if she had one.

  “So you really don’t think I have chronic Lyme disease?” Carol Ann asked.

  Bockenstedt paused.

  This was dangerous territory. Bockenstedt knew from bitter firsthand experience that the “Ly
me literate”—whether physicians or patients—could be ferocious in their attacks on doctors who were skeptical about this disease. She had trained at Yale and watched in 2000 as the “literate” protested outside Allen Steere’s lab. They shouted and carried signs accusing the onetime hero of Lyme disease of being a killer and a monster. He had been heckled and had even gotten death threats. Why? Because he agreed with the data. He stated publicly that no evidence supported the administration of repeated courses of antibiotics following an initial treatment for Lyme disease. And just last year when the Infectious Diseases Society of America had come out against the treatment of Lyme with months of antibiotics, ILADS charged the members with being in the pockets of the insurance companies who didn’t care about the patients and simply didn’t want to pay. (Bockenstedt’s vivid memories of the ad hominem attacks even made her reluctant to participate in my writing of this book, though in the end her commitment to educating the public won out.)

  Bockenstedt therefore weighed her words to Carol Ann very carefully.

  There was no evidence that Carol Ann had Lyme disease right now, she told her. None of the tests she had were positive by CDC criteria. In reviewing DeVries’s records, Bockenstedt noted that in the first two tests, done by Dr. Davidson, a couple of bands in the Western blot had been positive but not the five recommended by the CDC. And in the tests Bockenstedt had run, none of the bands had “lit up.” Carol Ann’s symptoms and the weight of the tests all convincingly pointed to polymyalgia rheumatica as the source of her ongoing symptoms.

  “No,” she told Carol Ann. “I don’t think you have chronic Lyme disease. You’ve been through a lot, I know. But I think you can trust this diagnosis.”

  Any doubts Carol Ann might have harbored vanished within days of starting the treatment. The prednisone worked quickly and soon her joints were pain-free. After two years of insomnia, she finally slept through the night. Her flulike feelings disappeared. She could think, she could concentrate, she could remember. She felt like a new woman.

  That was four years ago. Carol Ann stayed on prednisone for just over a year, tapering her dose slowly at the end as Bockenstedt recommended to let her body adjust. Since then she’s had one flare-up of the old symptoms, but a week or so of prednisone tamed the pain and eased the stiffness.

  So, did Carol Ann ever have Lyme disease? Probably not, Bockenstedt told me, but it’s impossible to know for sure. Certainly by the time she’d come to Bockenstedt’s office she had no evidence of the disease. Her painful joints weren’t swollen—as they usually are in a Lyme-related arthritis. And none of the test results that Carol Ann had gotten for Lyme reached the level of confidence required by the CDC guidelines. It could be that Carol Ann was one of those in whom the Lyme bacteria were killed before her antibody defenses formed. Or maybe the rash that the ER doctor based his diagnosis on was a single hive, left over from her attack earlier in the week. Bockenstedt strongly suspects that, in fact, Carol Ann had suffered from PMR all along, but she is careful to acknowledge she can’t know for sure. Which is exactly how real diagnosis of real disease often works.

  We have tools that are essential in the making of a diagnosis. You have the history. You have the physical exam. You have tests. Ultimately you have treatment. All pieces of the puzzle, all clues leading to the final diagnosis. Says Bockenstedt, “If I had treated Carol Ann with steroids and she hadn’t gotten better, I’d have to wonder—is this really what she has?” But the steroids did work—nearly perfectly. And so while Carol Ann had a good story for Lyme disease, her physical exam wasn’t consistent with that disease, her testing wasn’t consistent with that disease, and the treatment didn’t help her. “Seeing all this, I don’t understand how anyone could argue that Lyme disease is what was causing her all that pain,” Dr. Bockenstedt concludes.

  Testing has changed how medicine is practiced. Doctors can now be far more certain of a given diagnosis with the help of tests than ever before in the long history of medicine. But tests don’t make a diagnosis—thinking does. Better tests certainly make for better thinking and Lyme disease sure could use a better test. Until there is one, and possibly long afterward, concerns about missed diagnoses of Lyme and late diagnoses of Lyme will continue to be a source of confusion and contention for doctors and patients alike.

  CHAPTER NINE

  Sick Thinking

  David Powell sat quietly in the tiny emergency room cubicle. His muscular arms and chest were barely covered by the thin cotton hospital gown. He looked far too robust to be in the hospital, and yet this was his fourth emergency room visit in two months. “I’m losing my strength,” he explained quietly to Dr. Christine Twining, a young physician-in-training. “Doctors keep telling me I’m not having a heart attack. Okay, that’s good, I’m glad it’s not my heart. But can’t anyone tell me what is wrong?”

  It had started a couple of months earlier, when twenty-seven-year-old David noticed that his hands and fingers felt numb. Then he started having chest pains—a strange tightness or heaviness that made it hard for him to breathe. That’s what sent David to his local emergency room the first couple of times. His mother had recently died of a heart attack and he was afraid he was having one too. Once the ER doctors heard his story, they too thought it was his heart. But at each visit the EKG was normal, the blood tests showed he wasn’t having a heart attack, and the stress test suggested he wasn’t likely to have one anytime soon. That was reassuring, but it wasn’t an answer.

  As autumn turned to winter, David began to have a hard time keeping up at work—quite literally. He was a garbage collector and noticed that the short sprints from house to truck, which had been part of his daily routine, now left him panting. And the cans he emptied were somehow heavier. His muscles hurt constantly; he had frequent cramps. By the end of the route, his arms and legs shook with fatigue.

  “The guys would ask me what’s wrong, ’cause I’m strong, a weightlifter, and I was too ashamed to tell them I was getting weak,” David told the young doctor. “I’d just tell them I’d worked out at the gym real hard the day before.”

  The truth was, he hadn’t been able to work out for weeks. He simply didn’t have the strength. There were other symptoms too: he was losing weight—twenty pounds in two months. And he was tired. After work, he’d nap, get up for supper, then go back to bed. He also had terrible constipation.

  Then, just before Christmas, he was shopping with his wife and kept bumping into the shoppers crowding the mall. “I couldn’t make myself go straight,” he said. And his chest felt squeezed, as if he were wearing some kind of girdle around his rib cage. When he began to stagger that evening his wife insisted he go to the emergency room once more. During this visit, his third, there was another normal EKG, another normal set of blood tests, another doctor reassuring him and his wife that he wasn’t having a heart attack.

  A week later, he almost fell off the back of his truck. “My fingers were so weak,” he said, “I couldn’t hold on tight. Just one bump and I would have been on the ground.”

  That’s what brought David to the ER this time. As he told his story—his voice soft and level—he studied his hands, describing their disobedience: these days he had to use both hands to hold up his coffee cup; his handwriting had become a childish scrawl—barely legible even to himself; his fingers could no longer distinguish the coarse cotton of his work clothes from the smooth silkiness of his Sunday tie.

  When David returned to the Emergency Department this time, the ER doctor had again gone for the EKG and the blood tests to look for evidence of a heart attack. It’s practically a reflex when someone presents with a chief complaint of chest pain. Still, as he reviewed the young man’s chart the doctor knew that these were unlikely to provide any insight into what brought this guy back time after time. Emergency room physicians are trained to diagnose and treat life-threatening illnesses—true medical emergencies. For the majority of patients who come to an emergency room and do not have these immediate emergencies, ER physicia
ns make another very important decision about their care: does the patient need to be admitted to the hospital or is this something that can be followed up as an outpatient? While this guy had one of the key symptoms we are all taught to attend to—chest pain—the ER physician thought that it was unlikely the usual chest pain workup was going to provide this man with the diagnosis he sought. So he asked Christine Twining, one of the internal medicine residents-in-training, to see him and admit him to the hospital so that someone could figure out what was going on. While it probably wasn’t an emergency, it seemed to him that this young guy really was sick.

  Twining listened carefully to David’s story. He was so young and healthy-looking. What could be wrong with him? He was only twenty-seven years old; he didn’t smoke or drink. He lived with his wife and their six-year-old daughter. Although his mother had died at fifty-five of a heart attack, and two cousins had sickle cell anemia, the rest of his family was fine.

  Physically he was massive. He was just over six feet and weighed 240 pounds—lifting weights had chiseled off most of the fat, so what was left was muscle. On examination there was no evidence of atrophy in the well-defined muscles, and while he easily passed the standard doctor’s-office tests of strength, Twining thought that was because those tests were not designed for someone with greater-than-average strength, like this young man.

  He’d complained of numbness in his hands and feet. When Twining examined them they certainly looked normal, but when she jabbed them with the pointed instrument she used to test sensation, he couldn’t feel it. And when she tapped his joints with her small rubber hammer, the usual spontaneous jerk was completely absent. He had no reflexes. When she asked him to close his eyes and tell her whether she had moved his big toe up or down, testing one of our most primitive senses, he couldn’t even tell her that.

  Then the doctor noticed a result from a blood test done on one of the patient’s previous visits to the ER: he had a low red blood cell count. Anemia is unusual in an otherwise healthy young man. He had two very different symptoms—anemia and this odd weakness and loss of sensation. Were they linked? She couldn’t know based on the data she had so far.