Lyme misdiagnosis story from 1991

LymeScience republishes:

It’s not easy to separate the diagnosis from the patient

American Medical News

November 4, 1991

By John W. Burnside, MD, AMN CONTRIBUTOR

 Portrait of John W. Burnside

Dr. Burnside is a professor of medicine at the University of Texas Southwestern Medical School.

FIRST PERSON

Tales of medicine

DALLAS — “How’d you like to see a patient with Lyme disease?”

The questioner was Ivo White, a surgeon friend of mine. He knows how to tickle my interest — that I like to see patients with unusual illnesses. 

To have a diagnosis is to have a hook on certainty — sometimes. Someone else has seen the same thing and has put a name on it. The label can be prejudicial, though, because it provokes the clinician to ask not “What is wrong?” but “What should I do?” 

And so when C.P. Wainwright came into my office, I was prepared to deal with a case of Lyme disease. 

“Hello Mr. Wainwright,” I said. “How can I help you?” 

“Got Lyme disease and I need a new doctor.” 

“Had you been seeing Dr. White?” 

“Oh, no. I was doing some work for Dr. White. I’m a landscape architect and I got to talking with him about my Lyme disease and how I needed a new doctor. He said I should see you.” 

“Well,” I said, “tell me about your illness and how you think I can help.” 

“It started about a year ago. I got some tick bites in my work — always seem to be getting tick bites. Then I got this rash and felt bad. Got a fever and sweats and felt awful. It lasted a couple of weeks off and on but I didn’t see anybody about it. Then my sister said she had seen a TV program on Lyme disease and that was what I must have. So I went to my family doctor and he started to treat me.” 

“What did your doctor do?” 

“Well, he gave me some antibiotics and I felt much better.” 

“Did he do laboratory tests?” 

“Oh yeah, he took some blood samples.” 

“Did he say what he thought was wrong with you?” 

“Well, yeah, he said I probably did have Lyme disease.” 

“How are you now?” 

“OK now, but unless I take the antibiotics I get sick again. And my doctor says he’s not going to give me any more because I should be all better. But I’m not. I think he just gave up on me.”  

“Tell me more about your illness. Exactly what has been happening over the last year.” 

“Well, here, I brought you a whole bunch of information on Lyme disease.” He handed over a stack that included magazine articles, photocopied flyers and a brochure from a support organization. What he was telling me was that he had all of the preliminary material under control and now just wanted to get to the treatment. He pointed out to me that stubborn cases require intravenous antibiotics and he wanted to know how soon we could get started since his supply of pills was soon to run out. 

He began to grow impatient with my questioning. I sensed he was upset that I might not believe all he had been through, that I would not understand his weariness with feeling ill. 

“OK, Mr. Wainwright. How about I take a look at you and then we talk about where to go from here?”

“What d’ya mean? You want to examine me? What for?” 

“Well it will be helpful to me if I know where we are now so that I can see what progress we make with treatment.”

“Well, OK,” he said with resignation, “‘but the rash is gone and you aren’t gonna find anything cause I’ve been taking the antibiotic and now I feel good.” He was right — almost. The examination was really quite normal except that following the rectal examination there was a very faint blush of blue on the Hemoccult card. Perhaps I had disturbed a fissure or hemorrhoid. I asked about symptoms of ulcer disease. He denied any.

“How about your bowels, Mr. Wainwright?”

“Well they haven’t been too good cause of all the antibiotics. I tend to constipation and have to take lots of laxatives to keep ’em moving.” 

“Ever see any blood in your bowel movements?”

“Yeah, but my doc said I had hemorrhoids.”

“Well, I didn’t see any but perhaps you have some internal hemorrhoids.”

“Doc,” he said, getting quite upset, “it’s not my bowels I came to see you about. I don’t want to miss any more work and I’m really tired of feeling bad and taking pills!”

Deal time, I thought. I’ve been here before. The art of negotiating can be as important in the doctor’s office as in the corporate board room. 

“OK, Mr. Wainwright. Here’s what I suggest we do. Let me run a few blood tests on you today.” He scowled. “And I’ll give you some more antibiotics ’till I see you next week. In the meantime, I want to call your doctor and find out the results of his tests. How’s that sound?” 

His sigh was my only clue he’d go along with this plan. I also got him to agree to take a few stool test cards home and bring them the next week.

There were many phone calls over that week. I talked with his doctor and learned that indeed he had had a slightly elevated antibody titer to the Lyme spirochete about nine months earlier but it had not been repeated. I called our laboratory to find that his test was now negative. His sisters both called me with independent advice about how to treat C.P.’s Lyme disease. (They both called him C.P.) His wife called to know if I thought his illness would be covered by worker’s compensation and wasn’t there some kind of legislation to control this disease? All three said it was all right for C.P. to see me but they also knew of some experts in Lyme disease and didn’t I think maybe he should see one of them? Frankly, I was beginning to think that was a pretty good idea. 

C.P. came back and reported that he was feeling well. Wasn’t I satisfied now, and couldn’t we get on with the important business of starting the intravenous antibiotics? The problem was, all the stool cards he brought back showed blood. 

Once a diagnosis and a patient are hooked together it can be hard to twist them apart. No one likes to admit they were wrong. 

“C.P. you still have blood in your stool. I would like to take a look at your lower bowel with an instrument and see if you have some hemorrhoids or something else causing the bleeding.” 

“You mean you want to stick one of those tubes up my behind? No way, doc. My buddy had one of those and said it was awful. Can’t you do an x-ray or something?” 

Deal time again. ‘“OK, C.P., we can do an x-ray of your colon. It’s called a barium enema.” 

Exasperated, C.P. agreed just as long as we could then “get on with it!”

The X-ray showed a large apple core region, a typical picture of cancer of the colon. In addition, a small tract of barium filled an adjacent abscess. The antibiotics had concealed the presence of the pus pocket and made him feel well enough to tolerate the inexorable growth of the tumor. Sooner or later, of course, it would have obstructed his colon and he would have shown the weight loss and spread to his liver for which this cancer is well known. The question was, how much later were we? At least nine months of symptoms had passed. 

Surgery was arranged. It was difficult, since the abscess had caused dense adhesions around the area of the tumor. It was removed along with a generous wedge of the mesentery and as many lymph nodes as could be dissected-along the root of the mesentery and the aorta. 

Fools have great luck, and so we were told two days later by the pathology department that all of the lymph nodes were free of the disease and that the tumor seemed to be contained. The abscess was not a tumor abscess but an adjacent diverticular abscess.

The nub was that C.P. had probably been cured of his disease. 

I rejoiced with the family. It’s a thrill to see the enthusiasm for the routine come upon those who have had a close call. Small things are noticed and relished, food tastes better, courtesies are extended easily, the newspaper is more interesting and talk is more refreshing. 

But my vicarious participation was dulled just a bit on the day of discharge, when Mrs. Wainwright asked, “Doctor, how soon can we start on the antibiotics for his Lyme disease?”

 

Used with permission of the American Medical Association. AMA, American Medical News, It’s not easy to separate the diagnosis from the patient, 1991, Nov 27, p. 27. © Copyright American Medical Association 1991. All rights reserved. Courtesy of AMA Archives.


Patients fixated on Lyme disease 

American Medical News

January 13, 1992

The article by John W. Burnside, MD (AMN, Nov. 4, 1991) about a patient fixated on Lyme disease could be a textbook case of how patients and physicians can become so convinced that they have Lyme disease that they neglect other illnesses. This illness has become the darling of the lay media as well as patients with general non-specific symptoms. 

Like Dr. Burnside, I have helped many patients get over their true illness, only to find that they remain convinced that they still have Lyme disease. Regrettably, many physicians forget basic tenets of microbiology and infectious disease and continue to treat patients with antibiotics, even though the patients never get better. 

There are three reasons why patients diagnosed with Lyme disease do not respond to antibiotics: The diagnosis is wrong; the treatment is wrong; or the diagnosis and treatment are wrong. 

Dr. Burnside is to be commended for his insistence on thoroughly evaluating his patient despite his patient’s objection to considering any other diagnosis. If all physicians would follow his example, millions of dollars would be saved within the health system, and the medical and scientific community would be able to more accurately determine the true incidence of this usually benign illness in North America. 

MICHAEL F. FINKEL, MD 

Eau Claire, Wis.

 

Used with permission of the American Medical Association. AMA, American Medical News, Letter to the editor: Patients fixated on Lyme disease, 1992, January 13. © Copyright American Medical Association 1992. All rights reserved. Courtesy of AMA Archives.

 

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Nelson C, Elmendorf S, Mead P. Neoplasms misdiagnosed as “chronic lyme disease”. JAMA Intern Med. 2015

Kobayashi, et al. Misdiagnosis of Lyme Disease with Unnecessary Antimicrobial Treatment Characterize Patients Referred to an Academic Infectious Diseases Clinic. Open Forum Infectious Diseases. 2019.

Kobayashi, et al. Mistaken Identity: Many Diagnoses are Frequently Misattributed to Lyme Disease. American Journal of Medicine. 2021.

Jacquet C, et al. Multidisciplinary management of patients presenting with Lyme disease suspicion. Med Mal Infect. 2018. 

Haddad E, et al. Holistic approach in patients with presumed Lyme borreliosis leads to less than 10% of confirmation and more than 80% of antibiotics failure. Clin Infect Dis. 2018.