Doctor's story about a Lyme meningitis patient

Medical topics with questions, information and discussion related to Lyme disease and other tick-borne diseases.
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Doctor's story about a Lyme meningitis patient

Post by Lorima » Sat 25 May 2013 18:32

An interesting story from a medical resident, about a patient who died from brain swelling, after being apparently cured of Lyme meningitis.

The patient was treated IV ("shots") for three weeks, appeared to recover, but then died a few days after the IV treatment was finished, due to irreversible intracranial swelling - brain swelling - despite heroic intensive care treatment.

In the end, the physician-author seems to be convinced that the first Lyme test (presumably two-tier) was a false positive, because when admitted with brain swelling three weeks later, the next Lyme test was negative. This was described as a "Lyme titre", and it came back very quickly, so I assume it was the ELISA step that became negative. IgM or IgG is not mentioned.

Needless to say, I think that the two-tier test is so biased toward specificity at the expense of sensitivity, that a false positive is much more unlikely, than that a case of LD would unfold like this one. Since Lyme is so often said to be "never fatal", the mere fact that the patient died, is enough to convince most doctors that LD couldn't be the real diagnosis. The patient lived in NYC and had no travel history elsewhere, so that's another presumption of false positivity, which so many journal articles claim is the only problem with Lyme diagnostic tests.

It's worth reading this story for its depiction of medical culture, as well as what happened in this particular case.

I plan to read this doctor's book, that is mentioned and linked in the introduction to the story.
"I have to understand the world, you see."
Richard Feynman

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Re: Doctor's story about a Lyme meningitis patient

Post by Camp Other » Sat 25 May 2013 21:26

Lorima wrote:An interesting story from a medical resident, about a patient who died from brain swelling, after being apparently cured of Lyme meningitis.
It's very well written.

It's a case where I would have wanted to do a brain autopsy, and also culture the spinal fluid.

There's nothing written here which suggests either were done - unless I missed something.

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Re: Doctor's story about a Lyme meningitis patient

Post by Pandora » Sun 26 May 2013 4:05

Sounds like to me he was just covering his assets for killing his pt. with stupid.

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Re: Doctor's story about a Lyme meningitis patient

Post by Lorima » Sun 26 May 2013 17:15

I agree that we would like to have accurate autopsy information on this case, and a spinal fluid culture for Bb, or at least a PCR which is relatively quick and cheap. But in most hospitals (even at MGH, Steere's hospital!) there is no mechanism (no box to check) for these lab tests; they are only done in research labs, or ordered by LLMDs from specialty labs. The young doctor had to rationalize, to herself, the unusual step of ordering even the standard Lyme test, since the patient had no known tick exposure.

I think obtaining an autopsy that would detect LD was highly unlikely, too. First, autopsy is not usually done now. Some reasons for this are discussed in the article below, including the fact that the hospital bears the cost, which is substantial. Also, Bb infection would not be detected in a standard autopsy. The pathologists would have to be (a) looking hard for it, (b) skilled in doing so, and (c) allowed the time to do so, in contradiction to the emphasis on speed in medicine.

Here's an example where it was done, by committed LD researchers in Finland: ... 3.full.pdf

See this post by hv808ct, showing the attitude of the dominant US Lyme research establishment, including the CDC's Paul Mead, on this subject: ... how#p33673
hv808ct wrote: snip
by inmacdonald » Fri 4 Jan 2013 1:59

The Connecticut State Medical Chief Medical Examiner has complete discretion over
the scope of the Autopsy. Lyme Focused Autopsies are not practiced anywhere in the world,
as pathologists in busy practice and medical examiners in busy practice have more
work than can be supported by the available staffing.
There are no “Lyme Focused Autopsies” for the simple reason that it is very difficult to die from an actual case of Lyme disease. See:
Clin Infect Dis. 2011 Feb 1;52(3):364-7. doi: 10.1093/cid/ciq157. Epub 2010 Dec 28.
A review of death certificates listing Lyme disease as a cause of death in the United States.
Kugeler KJ, Griffith KS, Gould LH, Kochanek K, Delorey MJ, Biggerstaff BJ, Mead PS.

Kugeler et al. doesn't tell us much; death certificates are unreliable for causes of death, even without considering the lack of Lyme-focused autopsies, because of

(1) the prevalence of misdiagnosis
JAMA article by George Lundberg, former JAMA chief editor: ... _aug29.pdf ... 3.abstract


(2) the low priority placed on accuracy of cause of death on certificates, even when the true cause is known.

Here's an article I enjoyed, about the current low rate of autopsies and its implications.
Autopsy: The Boy Who Died Too Fast

By Elise Hancock


Does Brazas think of Frank as a person, or as a body? He says nothing for a minute. The water gurgles, rinsing the broad ribbon of bowel as it moves slowly across his gloved fingers. He stops to look more closely, to jot a note. "I guess I think of him as a person and a body," he says at last. "Mostly, I just think about the next patient who comes in like this. We'll do better because of what we learn today."

Learning-something-useful is the overwhelming reason to perform an autopsy, and has been since Leonardo da Vinci stealthily picked up a knife and took a look inside. One could argue, in fact, that scientific medicine began in that moment, when Aristotelian theory first gave way to direct observation. By the 19th-century medical revolution, autopsy had come out of the closet to be revered as the only reliable source of information.

How did particular diseases progress within the body? Was the diagnosis correct? Was it complete? What had the treatment accomplished, for better and for worse?

For every case, only autopsy could answer those questions. Only autopsy could help physicians improve their diagnoses and treatments. Autopsy was the only way to teach young doctors the inside of the human body, in all its variety.

The legendary Sir William Osler proclaimed his devotion to autopsy; he personally performed more than a thousand, and he often surged into the autopsy room at Hopkins with full retinue. In 1900, a future president of the American Medical Association (Abraham Jacobi) actually found it necessary to remind his academic colleagues that the practice of medicine included "not only diagnosis and autopsy, but the treatment and care of patients."

Today, though autopsy is still answering the same set of vital questions, the field is facing doubt. In 1950, half of all hospital deaths in the United States were autopsied. Now, including all the people who get a coroner's autopsy by reason of suspicious death or unknown cause of death, the Centers for Disease Control and Prevention estimate autopsies at 12 percent of deaths, and falling.

Apart from the legal mandates that govern coroners, no generally accepted protocol applies to autopsies. Physicians ask for them, or not, according to their individual judgment. No autopsy can be performed without legal permission from the next-of-kin.

When asked, U.S. families deny permission about 60 percent of the time. In a few cases, the reasons are religious; Orthodox Judaism, for instance, has an aversion to autopsy. Other families sometimes think�mistakenly�that the autopsy will delay the funeral, cost them something, or make an open casket impossible. ("Hospitals ordinarily absorb the costs," responds Grover Hutchins. "We can work extremely fast, if we have to. And morticians can do wonderful things. I have never seen a case where you could see any sign of the autopsy" and here he takes a deep breath, leans forward, and speaks with emphasis "even if you knew one had taken place and knew what to look for.")

Physicians know families may find the idea of autopsy repellent, especially in the first burst of grief, and they don't like to ask permission unless they must. Today, given all the new diagnostic tools�MRI and CT scans, laparoscopy, endoscopy, blood chemistry, genetic tests, and more�they less often think they must.

Elliot Fishman, a diagnostic radiologist at Hopkins, speaks for many when he says, "The detail we get of real live patients is so good, that often to get additional information at autopsy is not all that helpful. CT is almost like a living autopsy, the detail is so great." He is sure of that, after conducting research in which lungs were both scanned and autopsied. "Now the diagnosis is made while the patient is living." (Emphasis his.)

Grover Hutchins, a commanding figure behind his slab of a desk, begs to differ. "The CT is absolutely incredible," he rumbles. "It can pick up very subtle changes in the tissue. But can't tell what they are." Hutchins points out that in study after study, over many years, autopsies show that about 10 percent of patients were incorrectly or incompletely diagnosed, to the degree that treating what was missed could have lengthened life, or even cured.
That's a low estimate of misdiagnosis: see the articles I cited above, for example, where rates of 10% to 40% are mentioned, and also this recent thread ... =11&t=4839

Of course, the missed diagnoses change over time. For instance, leukemia used to be hard to diagnose, but today is almost never missed. Now the main stumbling block is infection: Bacteria, viruses, and fungi are on the upswing, in new, unexpected, and more virulent forms. Not only that, today's sickest patients often have not one but several medical problems, which makes it more likely that something will be missed. One disease can mask another, or make a full workup impossible, or simply get lost in the confusion. So old problems get solved, new ones arise, and the 10 percent holds steady.

"Ten percent?" says Fishman. He just can't believe it. "Well, you might say this: How often do you get autopsies now? Not that often. When do you get them? In select difficult cases. And that's how you might have a high percentage." In other words, sampling error.

Pathologists have wondered about that too. The resulting research indicates that no one, pathologist or clinician, can predict which autopsies will produce a big surprise. Being sure is not the same as being right. "Yeah, they're sure of the diagnosis," says pathologist Barbara Crain. "But they turn out to be wrong." By the same token, even when physicians are not sure, the diagnosis (and resulting treatment) can be correct.

Surprises at autopsy could be fuel for malpractice suits, or so one would think. "I have wondered sometimes," says pathologist John Yardley, "about the degree to which physicians do not seek autopsy because they know an autopsy may work against them." But of course the converse can also be true: Seeking autopsy shows confidence, and autopsy findings can form a basis for defense.

Which way it more often works is unclear, says Hutchins. "At the trial, there'll be some expert on each side who will support the argument made by that side, or they wouldn't be there." What the jury makes of it all, who can tell. "The autopsy may be irrelevant. The decision may be based on the jury's assessment of whether clinical care was adequate."
In the case of Merced, the young woman patient in the story. she was properly treated according to guidelines for LD with proper lab evidence. One can always say she should have been given more treatment (which may have been the case, in simple terms of what might have kept her alive) or that she shouldn't have been tested for LD at all, because her symptoms and history weren't exactly what IDSA says they should have been in order to justify testing. At least, nobody argued that she was causing her own symptoms (that they were "somatic"), which is still in style, as the freshly released DSM-5 confirms. See for example this article in the current issue of NEJM: ... 20anon.pdf
"I have to understand the world, you see."
Richard Feynman

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