Every Patient Tells a Story (29 page)

These kinds of consistent results from three separate, rigorous experiments, published in high-quality, peer-reviewed journals, would normally be considered a slam dunk in the medical world. The results clearly showed that antibiotics were
not
helpful for patients with persistent symptoms after being treated for Lyme disease, which strongly suggested that whatever was wrong with these people, it was
not
because they were harboring some “super
burgdorferi
” in their bodies. Leading medical groups involved in the study of Lyme disease published guidelines recommending against the use of multiple courses of antibiotics to treat the persistent symptoms. Normally, this would settle the matter and medical science would move on to a new mystery.

But that’s not what happened here. Instead a small but vocal group of doctors and patients refused to accept these results, refused even to accept the designation of Post–Lyme Disease syndrome. They clung, instead, to “chronic Lyme disease” and insisted that these symptoms
did
reflect an ongoing infection that warranted continuing treatment with antibiotics. They countered the randomized controlled trials with research of their own, which often showed improvement in patients given antibiotics. But none of these studies compared the antibiotics against a placebo. The randomized controlled trials showed that while patients getting antibiotics did improve, so did those getting the saltwater placebo. Studies done without the placebo had no way of telling whether the antibiotics were really effective or if the improvement was due to something in the normal ebbs and flows of any human condition.

Advocates of the “chronic Lyme disease” model of understanding also seized on the complexities of Lyme tests and argued that because of their
limitations, they should simply be disregarded. According to the International Lyme and Associated Diseases Society (ILADS), a group founded in 1999 to promote the dissemination of information on “chronic Lyme disease,” diagnosis should be based
only
on the patient’s symptoms. They don’t trust either physical exams or the two tests for Lyme disease.

“Available data suggest that objective evidence alone is inadequate to make treatment decisions,” say the ILADS guidelines, “because a significant number of Chronic Lyme Disease cases may occur in symptomatic patients without objective features on examination or confirmatory laboratory testing.”

The same guidelines assert that when the two-step testing for Lyme is used as recommended by the CDC, up to 90 percent of cases are missed. But this is misleading at best. The “research” offered in the guidelines to support this “fact” consists of a single unpublished study. And if you use the test on everyone with the common symptoms of fatigue, insomnia, and muscle pains, 90 percent of them probably will have a negative test because they don’t really have Lyme disease.

In fact, when used as recommended, the tests accurately diagnose Lyme correctly more than 90 percent of the time.

Instead of testing or the physical examination, ILADS and “Lyme literate” doctors suggest that diagnosis be made on symptoms alone. The problem here is that the symptoms these doctors have chosen to rely on are hopelessly broad and over-inclusive. They include fatigue, sore throat, muscle pain, joint pain, insomnia, chest pain, abdominal pain, dizziness, nausea, poor concentration, headaches, irritability, depression, back pain. These are some of the most common symptoms of patients presenting to a primary care office. As an internist who sees patients regularly, most of the patients I see complain of these symptoms—and they certainly don’t all have Lyme disease. Because I have an urban practice, I see only a few cases of Lyme disease a year.

And yet this is the diagnostic strategy that allows doctors like Davidson and Gaito to maintain that patients like Carol Ann or Will have “chronic Lyme disease” and that they should be continually treated with antibiotics because of a lingering infection with the Lyme bacteria.

But there is probably an additional factor at work in the stubborn refusal
of the “Lyme literate” doctors and patients to accept evidence that most other doctors find compelling. It’s an unavoidable aspect of all medical practice and is particularly related to the limitations of diagnostic testing—limitations that are particularly acute with Lyme disease. I’m talking about a discomfort with uncertainty, with ambiguity, with not knowing. And the doctors most uncomfortable in this way are the ones most likely to seize upon a diagnosis or diagnostic label and distort their own thinking in an attempt to prove to themselves and their patients that they know what’s going on.

The fact is that, more often than doctors like to admit, they cannot find a cause for a patient’s symptoms. This was powerfully illustrated in a 1998 study of two hundred patients diagnosed with Lyme disease. It turned out that more than half of the patients had
no
evidence of ever being infected with Lyme disease. As we’ve seen, it could be that some of these patients were treated for Lyme so quickly that they never developed the antibodies that would prove their infection. Maybe. But that surely could not account for such a huge fraction of these patients who tested negative for Lyme.

Only 44 of the 200 patients (20 percent) were found to have active Lyme disease—with symptoms, physical exam findings, and blood tests consistent with Lyme disease. Another 40 (19 percent) were found to have Post–Lyme Disease syndrome—with a clear history of Lyme infection, adequate treatment, and persistent symptoms. The other 116 patients in the study—60 percent of those enrolled—had no evidence of either current or past Lyme disease, even though all had been diagnosed with the disease. Clearly these results show that Lyme disease is being seriously over-diagnosed. But the results also shed light on the issue of uncertainty in medicine.

If the 116 patients who thought they had Lyme
didn’t
, then what
did
they have? A lot of things, it turns out. Fourteen had rheumatoid arthritis. Fifteen had osteoarthritis. Eight were diagnosed with another infection, and another dozen had some kind of neurological disorder such as multiple sclerosis or amyotrophic lateral sclerosis (ALS), often referred to as Lou Gehrig’s disease. Several were diagnosed with depression.

These diagnoses covered about half of the 116—and clearly demonstrate
how the phantom diagnosis of “chronic Lyme disease” is concealing a great many real diseases that patients should be getting help with. But the other half of the participants are also interesting. These people were obviously suffering from real ailments—real symptoms—but neither the study doctors nor their own physicians could determine a cause. These patients had what doctors call “medically unexplained symptoms.”

Nobody likes not knowing, but doctors, perhaps, find this state of being even more intolerable because it utterly thwarts their ability to alleviate suffering, which is often the fundamental motivation for their entire career. But a doctor’s discomfort in the face of the unexplained can lead them astray. Rather than accepting a patient’s symptoms as real, but unexplained, physicians all too often either dismiss the symptoms as unreal (“all in your head”) or, alternatively, read too much into scanty evidence in an effort to banish uncertainty with a crisp diagnosis. Neither response serves patients.

We can see the results of both types of responses in Will Hammer’s experience.

“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.