Eugene Shapiro
Lucille Packard Children's Hospital (Stanford Medical School)
Grand Rounds Presentation Transcript
September 24, 2004
50-60 pediatricians, residents, and other MDs in attendance. Open to the public.
QUOTES- (full presentation below)
ON CDC map of reported cases of Lyme:
"California. This is ridiculous. This is the desert here. But if some nut reports a case of Lyme disease, it gets included."
On neurological Lyme:
"… I've never seen a child with late neurological Lyme. It has been described in adults, mostly in more elderly adults who had objective evidence of Lyme disease but were not treated for many, many years. And [in] those people – it's extremely, extremely rare."
On parents who insist than their children have Lyme disease:
"… some of this is Munchausen's by Proxy."
On the Lyme vaccine:
"…it was taken off the market, not because of any problem with the vaccine, but because it was not profitable."
On the CDC Lyme surveillance criteria:
"... the CDC have criteria for epidemiological purposes, and it turns out that those criteria are pretty good to use clinically."
On congenital Lyme:
"Infection of fetus had been documented but congenital DISEASE has not.
No pattern of congenital malformations associated with infection of the mother."
On babesiosis:
"Babesia is rarely a problem unless you're immunocompromised or don't have a spleen.
On rash:
"So if you have someone who you think might have erythema migrans, but you're not certain, there's no harm in waiting and watching for a couple days.
On false positive tests:
“Because, if you send Lyme titers for every person with a flu-like illness, for everyone that you accurately diagnose, there are going to be thousands that you're going to call Lyme disease that don't really have it.”
On neurological Lyme:
“I used to have late neurological Lyme on this slide, but I took it off because I've never seen a child with late neurological Lyme.”
On relapses:
“But that recurrence of arthritis seems to be an autoimmune phenomena. It's not that the antibiotics could not adequately eradicate the bacteria.”
On seriousness of the disease:
“So here's an ad that appeared one day in the New Haven Register. It occurred on the obituary page, by the way. [laughter] It says, symptoms getting worse, muscles or joint pains, chronic fatigue, mood swings. You may have Lyme disease, a debilitating but treatable bacterial infection.”
On colleagues:
“Dr. Jones by the way once diagnosed a teenage who attacked a cat with an ax, diagnosed this as chronic Lyme disease over the telephone. I kid you not. I was involved with the court case.”
On patient requests for help:
“You know, so what's going on? The amount of anxiety and angst over this is incredible. Just let me tell you. You can't believe the stuff I get in my emails. Here's an email that I got one day. You'll notice that it's from RedNeck5. I can't wait to hear from RedNecks one through four. [laughter]”
On symptoms:
“So, sure you may have a swollen knee and feel tired, but you may have a headache and erythema migrans. If all you had is a headache or aches and pains, it ain't Lyme disease.”
On volunteer patient advocates:
“Some of these Lyme disease support groups really put a lot of pressure on us. And the NIH is really under pressure by lawmakers to do something to study this problem. … Most of these patients had already been treated for an average of something ridiculous, like 4 months.”
On clinical trial:
“Concluded that the chance of finding an effect of treatment, even with full enrollment, was virtually nil.”
“So clearly, these patients were sick. They had problems. It's just that antibiotic deficiency was not one of them. [laughter].”
On diagnostics:
“And if someone told me that they got bitten, right here, and a week later they developed this rash, and it looks like a erythema migrans rash, but it's only 4cm, I wouldn't say, "Oh, no. It's not Lyme disease."
On reading test results:
“The criteria for IgM positivity I think is extremely liberal. You need only 2 of any 3 bands. And false IgM tests are extremely, extremely common, including Western Blots. And people say that you should never make a diagnosis on Lyme disease based solely on IgM. Especially when someone has had symptoms for more than a month.”
On positive test:
“If you had a headache, nobody would walk into an office and say, "Ah, ha! Your measles antibody is positive. You've got measles." But God forbid you should have a positive antibody for Lyme disease. You know, you walk across the street and say, it's Lyme disease. People are ready to attribute anything to Lyme disease.”
On tests and cure:
“I often get calls, "Well, I had this child with Lyme arthritis, and I repeated the antibody test, and it's higher than it was. What do I do?" Well, how's the knee? "It's all better." Well, that's how you tell if it's all better. Not by the Lyme titer.”
On false positive tests:
“First of all, there are lots of false positives…. And false positives, even for Western Blots, are not uncommon.”
On results of antibody test study:
“And the conclusion – not my conclusion, but their conclusion, too – that the currently available tests to test for antibodies for Bb are very inaccurate. And the use of these tests will result in a high rate of misdiagnosis”
On dismissing patient complaints and test results:
“So, if you have a clinical situation, where a patient has vague symptoms, not likely to be Lyme disease. Antibody for Bb is negative, not likely to be Lyme disease. Antibody for Bb positive, diagnosis: Not Lyme disease.”
On famous people with Lyme:
“Do you know who this is? Right, Christy Brinkley. Now Christy Brinkley was deathly afraid, and she lived in a big estate on Long Island. She was deathly afraid of getting Lyme disease. So she employed these guinea hens. Lots of these guinea hens that eat ticks supposedly. They spread out on her property to try and eat the ticks. Supposedly she got Lyme disease anyway, the poor thing. [laughter]”
On tick engorgement:
“That means 90% bitten by an engorged tick didn't get Lyme disease. And none of 59 who had flat, unfed ticks got it.”
On severity of Lyme:
“So all we're doing is talking about preventing a little rash. This isn't AIDS that we're talking about or preventing, folks. It's not a big deal if you get Lyme disease. It's easy to treat and cure.”
On proper time to treat:
“So watching and waiting is the most reasonable approach.”
On risk of Lyme after tick bite:
“The risk of developing Lyme disease after a deer tick bite is very low…. A number of studies have found that long-term outcomes of person treated for Lyme disease are excellent.”
On long term outcome and symptoms:
“If you ask me if my memory today is as good as it was 10 years ago, it ain't, but I don't have Lyme disease. But it turns out that the frequency of complaints are similar among age-matched controls. So there isn't any evidence that Lyme disease is really related to any long term outcome.”
On ehrlichia:
“I frequently see people diagnosed with chronic ehrlichiosis, of which, there is no such thing to start with.”
On pets with Lyme:
“Q: Dogs frequently pick up ticks. Do they get Lyme Disease? A: Yes, they do get Lyme disease, but as with humans, I think it's grossly overdiagnosed. But they do get it and the vets in our area find Lyme disease to be a lucrative disease.”
On treating patients:
“Q: How do you convince people who are committed to the diagnosis of Lyme disease, that Lyme disease is not the cause of their non-specific symptoms, especially after they have the support of their own physician, confirming this diagnosis. A: I have a whip! [laughter]”
On what “ain’t Lyme disease”:
"So it doesn’t matter what the test result is in someone who walks in with aches and pains and fatigue for six months. That ain't Lyme disease, whether the test is positive or negative."