Note: the following transcript is a radio script and contains audio cues and other quirks (including imperfect grammar) of the medium. It may contain typos.
Todd Murray: 47 - Again it’s hard to know what normal is. When you grow up and your entire teen years you’re suffering from a disease that’s not been treated, and then you get into your 20s you don’t know what a normal body should feel like.
[Music]
For Polly Murray, the woman from Connecticut who helped bring attention to Lyme disease, the campaign to bring awareness to Lyme was a choice. But for the rest of the Murray family, it was more like a natural disaster…one they would have preferred to forget. One that would continue to disrupt their lives for years to come.
And Polly’s youngest son Todd suffered the most.
Todd Murray: 36 - Yeah, there was a feeling of behind left behind. I also, and I’m not sure if this was related to Lyme disease, or taking high-dose aspirin, I feel like my growth was stunted, for whatever reason...
To be clear, Todd was healthy enough to function… He was bright enough to do well in class, and eventually get into medical school . But even after the years of swollen joints subsided, and Lyme Disease had been given a name, he still didn’t feel quite right.
Todd Murray: 57 - Fluency of speech, words coming out backwards. The beginning of words coming out switched. Problems with concentration, problems with short-term memory. Can I say 100 percent? Some of these things are probably age-related, but I think I experienced them you know, when I was much younger than they should have happened.
Taylor Quimby: 45 - When eventually they figured out it was a bacteria and identified the bacteria, did you ever get called back for treatment.
Todd Murray: No I didn’t. I think I was in college at the time. I think I remember my mom telling me they had discovered this bacterium. So yeah, I do harbor a little bit of, perhaps, resentment and perhaps a little bit of anger that nobody really thought to think you know this is a bacterial disease, and nobody thought oh we should make sure to go back and make sure these people are treated.
Todd did eventually get treated. But the uncertainty that comes from this variety of medical history is enough to make a person paranoid. Because even if the lyme was gone - the ghost remained.
This is from our first interview, over the phone.
Todd Murray [over the phone]: You know, when I do an interview and I hear myself talking… and I have word-finding difficulties, I can’t help but think that it’s related to, going back to my initial infection so many years ago.
Taylor Quimby: It feels like a bit of a curse.
Todd Murray: yeah, exactly… I’ve often used that exact word. That Lyme was a curse on my life in that sense…
A curse. A ghost. Given his history, Todd is pretty open to some of the ideas that surround Chronic Lyme Disease; the idea that the Lyme bacteria can persist in your body, even after treatment, for years, that its symptoms can be deceptive, and even the controversial central tenet of the Chronic Lyme community, that patients might require multiple rounds of long-term antibiotics.
But Todd has a unique perspective on the issue — because today, he is a doctor of emergency medicine, practicing in Massachusetts.
Todd Murray: There are also clearly a subset of patients who may or may not have had Lyme disease and are convinced that everything that’s wrong in their life is due to Lyme Disease, and you know who literally are antibiotic dependant from a psychiatric point of view, and as soon as the antibiotic is stopped, I’ve had people show up in the ER saying “my symptoms are back” and they just stopped antibiotics 24 hours before. And I just know that this is a psychiatric phenomenon.
Even Todd Murray — one of the first diagnosed cases of this epidemic, whose own Lyme disease went untreated for many years — can see that some patients are clinging to a Chronic Lyme diagnosis, when they might have other problems.
Toddy Murray: 55 - Well, everybody can be a little different… but sometimes I feel like telling my patients, ‘look if anybody knows what Chronic Lyme Disease is… it’s me. If anybody knows what all the symptoms should be, it’s me.’ Yeah, it’s frustrating.
[Patient Zero theme music]
For the droves of people who get treated quickly, Lyme Disease can be no big deal… But for those who don’t, Lyme can transform lives in dramatic ways… sowing discord and confusion, causing a variety of nasty symptoms, and in very rare cases… ending in death.
I’m Taylor Quimby. In this episode, complications… why is it so hard to know even the basics? Do you have it, or don’t you? Left unchecked, where can Lyme go in your body? What are all the symptoms? And how has all of this uncertainty gotten us to where we are today?
This is where Lyme history meets Lyme present.
This is where we see that even as science advances, questions remain.
This is Patient Zero.
<<<<<<<<<<<<<<<>>>>>>>>>>>>>>>
If you can, I want you to pause the podcast and grab a piece of paper and a pencil. If you’re busy, just use your imagination.
Ready? First, I want you to draw a big box.
[PENCIL SOUND]
And then inside, draw the outline of a bell.
[PENCIL SOUND]
When doctors-in-training first start shadowing licensed physicians, they’re often in for an unnerving surprise. Diseases do not always appear the way they do in medical textbooks. They appear on a bell curve.
Imagine that the bell in front of you represents all of the people with Lyme Disease. Most of them are in the center of the bell - the tallest part.
These are the people who experience something close to the version of a disease that students read about in medical textbooks. A bull’s eye rash, a flu-like illness.
Now draw two vertical lines on either side of bell’s center. You should have cut off the sides of the bell, so they look like little skateboard ramps.
On the left side of the curve, near the bottom edge of the bell, are the patients who for some reason - just don’t get very sick.
They might have such mild symptoms that doctors confuse Lyme disease for something minor.
And on the right side are the patients that get much, much sicker. People who have increasingly strange symptoms that are either so rare they don’t even wind up in the textbooks, or unusual enough to be statistically unlikely.
When healthy people are thinking about something, the common cold for example, they’re not really thinking about the edges of the bell. Chances are you’ll get better in a couple weeks.
But should you miss Lyme Disease in a patient on the left hand side… someone who doesn’t really get sick... or center of the bell…. Someone who gets sick but doctors just think it’s a flu virus or something… they’re liable to wind up moving further and further over to the right.
And it’s the right side, where people really fall through the cracks.
Anonymous Male Listener: My Lyme story started on June 26, 2006, when I developed terrible neck pain that settled behind and under my right ear. A couple of days after it started my wife noticed that my mouth wasn't moving right when I spoke. I went to urgent care. They said they couldn't rule out the possibility that I was having a stroke and they sent me to the E.R. immediately. At the E.R. they said I wasn't having a stroke after doing some tests but couldn't figure out what the problem was except that they said I was on my way to Bell's Palsy. They were right. The next morning I couldn't open my right eye and the right side of my face was totally paralyzed.
Remember the last episode? In the first few days of infection, the Lyme Disease pathogen can is motoring away from the tick bite. That’s the early localized stage of Lyme disease, characterized most often with some form of the bullseye rash, and flu-like symptoms.
But if the bacteria gets out of your skin and into your bloodstream, that’s when these more frightening, more confusing set of symptoms start to appear. It’s the Disseminated Stage: as in the bacteria has spread — or disseminated — throughout the body.
It can wind up back in your skin - and cause multiple rashes all over your body.
It can wind up in your joints, and cause pain and swelling.
It can wind up in your nerves, and cause tingling, pain, numbness, or weakness in the arms and legs.
Or it can wind up in a nerve in your face, and cause Bell’s Palsy, like it did in the case of the anonymous listener, who sent in their story.
Anonymous Male Listener: And then they started me on a one month of intravenous course of antibiotics. My symptoms mostly cleared up over 2 to 3 weeks.
About 9% of confirmed Lyme patients between 2001 and 2015 had Bell’s Palsy. It’s treatable, but can leave permanent damage.
Anonymous Male Listener: [00:03:58] The most significant is that the right side of my face doesn't work quite right. Those who know me can tell.
This is why patients who don’t get classic, middle of the bell curve symptoms — a flu and a bullseye — are at real risk. If you don’t get diagnosed early, you can skip right to the bad stuff.
Anonymous Female Listener: My lyme story began when I was 15 working at my first job and I felt unbelievably tired. Pain, severe headache, sensitivity to sound and light, and raised pink leopard spots all over my torso that didn’t itch or hurt. And I remember one doctor kind of jokingly, I think they thought I was faking it, because I think they thought I was faking it because I was a teenage girl, first week of summer vacation, first job ever, and I’m like I’m so tired I can’t go to work. They’re like, ok. It sounds like bacterial meningitis, so either it’s too late, or it’s not bacterial meningitis, so go home. The symptoms were pretty severe, and my mother was pretty insistent that they start a round of doxycycline. After about 24 hours my symptoms were I think completely gone.
Taylor Quimby: And the test came back positive.
Anonymous Female Listener: Yes
If the lyme pathogen snakes its way into your skull, it can cause inflammation in the meninges. That’s the area surrounding your brain, and swelling there can cause excruciating head and neck pain. Less than 2% of confirmed cases between 2001 and 2015 reported meningitis.
Even further on the bell curve are symptoms associated with sight. Lyme can burrow inside the optic nerve, and Inflammation there can cause double vision, or in very rare cases, blindness.
And most notably, Lyme can squeeze in between the cardiac tissues in your heart and slow the electrical signal that makes it beat correctly.
Making up just 1% of confirmed US Lyme cases between 2008 and 2017, It’s a rare complication of Lyme. But frankly, it’s the one that can kill you.
Since 1985, the CDC has tracked nine deaths in the medical literature to heart infections associated with Lyme Disease. Specifically, this complication is called Lyme Carditis, and notably, people who get it are less likely to have gotten a bull’s eye rash.
A quick word about these statistics… They are all taken from studies that do not apply universally, throughout the globe, and for all time. There are big differences in rates of various Lyme symptoms in the US, versus in Europe — where the primary species of pathogen that causes Lyme Disease is slightly different than the one we see here. And these statistics have changed and will continue to change over time.
In other words, these are all just averages… big ballpark numbers. It’s really hard to know what’s happening in each patient’s body. A famous epidemiologist named William Farr once said, “the death rate is a fact. Everything else is an inference.”
[Music]
Rare as they are, symptoms like Bell’s Palsy and Lyme Carditis share an important quality - they are objective symptoms... as in, they can be measured using tools and tests … through an electrocardiogram, or physical exam..
As we move further along the bell curve, and deeper into the brain, things get trickier.
Brian Fallon: So there are rare manifestations of Lyme disease stroke was another example and what's what's that from that's most likely from inflammation in the arteries feeding the brain. And if you get inflammation then you get occlusion then you get a stroke.
This Brian Fallon director of the Lyme and Tick Borne Diseases Research Center at Columbia University Medical Center.
One of the geographical differences you’ll see in Lyme Disease is that the North American version of Lyme is more likely to cause arthritis - and the European version is more likely to cause something particularly scary-sounding:
Neuroborreliosis, which translates to Lyme Disease in the nervous system, and brain.
Brian Fallon [45] - Malaise, slow cognition, word-finding problems…
Todd Murray [57] - Fluency of speech, words coming out backwards. The beginning of words coming out switched. Problems with concentration, problems with short-term memory.
[Kris Kristofferson song]
In 2013 country music legend, Kris Kristofferson said in an interview on Fox News that his memory was slipping…And a few years later in 2016...
Fox News Clip: A shocking misdiagnosis, actor… it was actually undiagnosed and untreated Lyme Disease…how in the world does that happen. Let’s ask our Fox News A team doctors.
[Music fading to static]
Neuroborreliosis can be debilitating, in part, because tracing symptoms directly to the Lyme infection is really hard. And subjective symptoms like these are more likely to get misdiagnosed.
Fallon: Unfortunately, those patients would go on to have untreated Lyme disease for many months until someone finally decided to say ok we’re going to try a course of treatment and see if it helps you, and sometimes it would help those patients.
All of these different symptoms… Part of what makes them so frightening, is that they seem so disconnected, but there is one thing that pretty much unites them all: Inflammation. Swelling.
Brian Fallon: [00:54:08]. If you don't have inflammation if you don't have an inflammatory response to the spirochete then you’re not going to have symptoms.
[Music]
Here’s a tip that’s helped me navigate Lyme disease. “Itis” is the medical suffix that means inflammation and swelling
Meningitis is inflammation of the meninges.
Carditis is inflammation of cardiac tissue - heart muscle. Arthritis means inflammation in the joints.
Futurama Clip: I was diagnosed with terminal boneitis.
Actually, inflammation of the bones is called osteomyelitis. But you get the idea.
Futurama Clip: My bones! [gasps] Oh my god, his boneitis!
The point is, symptoms of Lyme are not caused by some sort of toxin released by the bacteria, like cholera, or because the virus is actively killing your cells, like ebola… In Lyme Disease, the symptoms are caused by your own immune system, as it attempts to hunt down and fight off the invaders.
In a way it’s collateral damage.
[Music]
And inflammation might just be the key to one of the biggest mysteries in Lyme disease; one last constellation of symptoms, and one that I can honestly we don’t understand much at all: something called Post-Treatment Lyme Syndrome.
Post-Treatment Lyme Disease Syndrome is a proposed case definition that seeks to describe the 10 to 20% of Lyme patients that continue to have symptoms after treatment.
These symptoms do not include things like Lyme carditis, and bell’s palsy… which typically disappear after antibiotics,and would be an indication that the infection hasn’t been cleared.
Rather, these are symptoms like fatigue, general muscle and joint pain, cognitive impairment, and depression. The stuff that can be caused by a lot of maladies, and the sort of things that aren’t easy to explain to your family, or your boss. It’s a condition that can take months or even years to resolve.
There are theories about what causes Post Treatment Lyme Disease Syndrome — and we’ll talk more about it in a later episode. But for the time being, I’ll just say this: if forced to answer the question, why do some Lyme patients still have symptoms after treatment - the only responsible answer is “we don’t really know.”
Everything else is an inference.
[Promo Break]
Here’s a simple question, with a really really complicated answer. How do you know you have Lyme disease. Not how do you know if you’ve ever had it, but how do you know if the bacteria is in your body right now.
Tom Brokaw: Next tonight, an end of the summer story. People returning from vacations may be returning with more than a tan and some postcards: Lyme disease…
Towards the tail end of 1994, Dr. Allen Steere, the rheumatologist who first investigated Lyme disease, along with scientists from the CDC and other government agencies met in Dearborn, Michigan.
Like most scientific meetings, the gathering was given a name designed to communicate its historic magnitude and importance.
It was called The Second National Conference on Serologic Testing of Lyme Disease.
Okay so the name’s not great but they were there to solve a serious problem that had cropped up with the Lyme disease laboratory tests: namely, that they were terrible.
News Clip: Mary Bronaman [sic?] concluded the lyme test was useless. “It doesn’t matter if you’ve got a positive titer or not, it means nothing. The important thing is to just to think, if you’re sick, if you’re feeling washed out, if you’re feeling arthritis, if you’re getting headaches, if you’re getting god knows what, assume it’s lyme disease. And don’t worry about the test.
[Mux swells and fades]
Elie Theel: I would say the first diagnostic tests that came out for Lyme were probably in the mid to late 1980s… So there wasn’t a lot of standardization with the early diagnostic assays for Lyme Disease.
This is Doctor Elie Theel. She directs the Infectious Disease Serology Lab at Mayo Clinic, and she had my favorite answer to the what did you have for breakfast sound check question.
Elie Theel: I think I had a hard-boiled egg, watermelon and feta cheese.
Taylor Quimby: Oh that’s a cool… that’s a cool breakfast.
Elie Theel: It’s a very strange breakfast.
Taylor Quimby: I like it though!
Elie Theel: It’s the breakfast you eat when you have two kids.
Do you ever wonder why, when you go to the doctor, sometimes they take blood - and other times they take samples with a cotton swab? When a physician suspects that you have strep throat for example, they swab it - and then they try and culture, or grow the strep bacteria directly in a laboratory.
If it grows - well, great - now you know for sure you have strep throat.
But what about things — like the Lyme pathogen — that don’t grow easily, quickly, or reliably?
That’s where serology comes in.
[TV Clip] - Tiny particles called antibodies are being produced and poured into his blood stream.
Elie Theel: Right, so for serology, again we’re detecting the immune response to the infection, we’re not actually detecting or isolating the bacteria or the fungus itself..
When doctors take your blood, they’re looking for clues… indirect evidence that you’re sick. They can’t see the actual pathogen - instead, they’re looking at your antibodies - proof that you’re body is fighting the infection.
But antibody tests have drawbacks. For one, some antibodies last in your system for years… decades even.
[TV Clip] - He now has a surplus of antibodies that will aid him to resist future attacks of disease.
If you ever had chickenpox as a kid, your blood would test positive for antibodies to chickenpox, but that doesn’t mean you’re actively infected.
Another problem with serology is the issue of subjectivity.
Taylor Quimby: Can you tell me what you mean by subjectivity?
Elie Theel: Well for example, for the… [fades down]
Some of the tests used to diagnose Lyme disease are read visually. As in, a technician literally has to look at a sample and interpret whether or not it’s positive. It’s not like a numerical test, that has a cutoff for pass or fail. It’s more like one of those paper strips that are used to test the acidity of pools.
Elie: You look through a microscope and using your your eye, determine how much fluorescence there is in on the slide for the patient sample.
Tq: [00:14:41] You mean how much I look like glowing,
Elie: [00:14:43] how much it's glowing. Right.
When you get your blood drawn, it feels so concrete. Yes or no. Black or white. But you pull back the curtain, and you realize there’s no fancy machine back there that spits out a result. No wizard, brewing up some magical solution - just a person, whose judgement you’ve got to trust.
Elie Theel: Depending on the technologist reading the slide one person may call it negative another person might call it positive.
There are some other reasons why the tests aren’t perfect: lyme antibodies can look like antibodies to other diseases: Mono for example. So if you have mono, you might test positive for Lyme, incorrectly.
And for all these reasons and more, people back in the 80s and 90s didn’t trust the tests. And studies showed that they had a reason not to.
Elie Theel: Yeah. So it was in 1992, a study basically sent out, I believe it was nine or ten samples, the same samples to 45 or so different laboratories.
In other words, they were testing the labs against one another to see who was doing a good job.
Elie Theel: So whether or not the laboratory got the answer right varied anywhere from 45 percent to 100 percent, meaning that, you know, for for some laboratories, they only got 45 percent of the samples correct.
And in the same study, they also took single samples, split them up, and sent them to the same labs multiple times to see if they could diagnose consistently .
Elie Theel: Meaning that one time they called the sample positive. Another time they called that same sample negative.
[more space here]
Dr. Allen Steere, the original Lyme investigator, was at this point Chief of rheumatology at Tufts. He had described the symptoms of untreated Lyme as “chronic.” He had co authored papers on neurological symptoms, and Lyme carditis. He had warned, in his media appearances, that there was much more to learn.
Allan Steere: I think that considerably more than 5 years may be needed to try to really understand how this disease works.
But he was worried that Lyme had become a trendy diagnosis… and that the gate to get in — to get diagnosed — was too wide.
Whereas patients were worried about false negatives…
[clip: I had asked right all along, is it possible that this was Lyme’s]
He and other doctors were worried about false positives.
[Clip: Many patients that we see are told they have Lyme disease based upon a poor laboratory test. Treated for Lyme disease, when they really don’t have it.
Reporter: the government is now pumping more money into developing a better blood test. A little late, experts say, but a recognition that was once a regional problem is now a national one… {fades down}]
Which brings us back to 1994, and that big fancy conference… The Second National Conference on Serologic Testing of Lyme Disease. in Dearborn, Michigan. - 1994.
Elie Theel: They came up with a standardized approach to diagnostic testing for Lyme disease. So they agreed on the methods that were acceptable as well as the interpretive criteria that should be used. So what to call positive, if you will, and what to call negative.
And that was that, the case was finally closed - and since then, not a single patient or doctor has ever complained about the accuracy of the lyme tests.
[rustling papers sfx]
Oh wait, that’s not right.
Clips from listeners:
[... they said they couldn’t test me so they couldn’t be sure if I had Lyme disease because the test only tests you for antibodies which I already had… because I had it before]
[... the first Lyme test came back negative, but a week later, it came back positive...]
[... cause at the time you couldn’t get that test on Martha’s Vineyard, without testing positive on a different test. It was a complicated process...]
[...all the tests were negative… straight across the board… negative, negative, negative, negative...]
Needless to say, the standardized approach decided in Michigan - called The Dearborn Criteria - hasn’t put questions about testing to bed. Partly because the criteria, while more accurate, are still confusing for patients.
And a serious drawback of the testing hasn’t been fixed… for the first few weeks of infection, patients have not developed antibodies for Lyme disease yet… and because of that the tests for early lyme is not good. If you’ve had the infection for a few weeks, they’re much more dependable, but if you were just bit… there is no good test.
Elie Theel: In patients that have an erythema migrans rash, we flat out state state to not perform any sort of serologic testing because you're going to be negative.
The changes in 1995 after the Dearborn meeting was not welcomed by all. The tests were generally more conservative about who was positive… and that left a lot of patients feeling like the rug had been pulled out from under them.
Brian Fallon: Because a number of patients who had been previously diagnosed with Lyme Disease now no longer met criteria for Lyme Disease, or would no longer be able to get treatment for Lyme Disease if it was a new case...if they didn’t test fully positive.
This again is Brian Fallon, from Columbia University’s tick disease research lab.
Brian Fallon: positive and so doctors in the community who were seeing a lot of these patients then knowing that antibiotics could be helpful to these patients we're being told that they were doing bad things by giving patients antibiotics for a flu like illness... if there was no rash and that person came from a lyme endemic area. And even if even if there was a tick bite sometimes they would get into trouble for giving antibiotics.
Given the years of unreliable tests, the many years it took to discover the cause of Lyme Disease, and the mistakes that were made along the way, an understandable thicket of distrust had crept over Lyme disease since 1975.
[TV Clip] I think it is an error to assume that one’s own test and only one’s own test is the final arbiter of who does and doesn’t have Lyme disease and discount other tests from good laboratories.
So after the meeting in Michigan, there was a demand for alternative testing that bucked the new recommendations.
And this is maybe the biggest reason that the Dearborn meeting failed to solve the testing problem: labs don’t have to use them
Igenex commercial - “Most tests for tick-borne disease follow standards set 25 years ago, when less was known about the diseases. This can often lead to misdiagnosis.”
Serological testing isn’t FDA regulated, and since the time of the Dearborn meeting, a handful of labs have continued to offer tests that aren’t endorsed by the CDC.
The most popular of these labs is called Igenex — It’s based in California.
Igenex commercial - “For over 25 years, Igenex has been on the forefront of research and development of diagnostic tests for Lyme Disease”.
From their advertising, you might be under the impression that labs like Igenex offer special tests that are unlike any others in medicine. This isn’t really the case. Mostly what they do is run the same tests, but interpret the results differently - moving the cut-off point for what’s considered positive .
Brian Fallon wanted to know how these different labs — the big commercial ones, using the Dearborn criteria, and the specialty Lyme labs, that rebelled against it — compare when it comes to diagnosis. So he did a study that sounds a lot like the one that was done in 1992.
Brian Fallon: We sent serum out to four different labs and we had controls as well and we divided up the serum into the four tubes and sent them out to four different labs just to see what the reproducibility of the results were from lab to lab.
He sent samples from patients who had Post-Treatment Lyme Syndrome… and from healthy patients with no history of Lyme. What he found was that the so-called specialty labs had way more false positives.
The labs themselves were anonymous - so I don’t know if Igenex was one of them.
Brian Fallon: Now my study has been critiqued saying well how do you know those are false positive. How do you know that those people didn't at one point have infection with the Lyme spirochete but didn't recognize it and didn't develop a full blown illness.
Let’s pause here and think about that… I mean really think about it… Because that criticism, it’s the ultimate catch-22.
And there’s a logic to it. I mean, how do you know any test is a good test? How do you test the test? And then, how do you test the test that tests the test?
[Music]
Taylor Quimby: The criticism that you're talking about that how do you know that they didn't have an infection and therefore it is a positive in some ways. There's no there's no way you'll ever know. It's like that's the black box that that.
Brian Fallon: Right.
Taylor: That criticism could be lobbed against literally any study no matter how tightly you try and design it. There is a certain element of well you can't know but you've got to do the best with what you can.
Brian Fallon: That's right.
The Dearborn criteria just got an update this summer, but the tests are still really unreliable in the first couple weeks of an infection. They are backed by the best science available, but critics have a point too… that the best science still isn’t 100%... And there’s a certain amount we’ll never really know for sure. There will always be people on the margins.
[Music]
So how do you know when you’ve taken your dose of healthy skepticism too far?
Samuel Shor: My name is Sam Shor, associate clinical professor, George Washington University, chair of the Loudoun County Lyme Commission and immediate past president of ILADS. The international Lyme and Associated Disease society.
ILADS is a body of doctors, naturopaths, and advocates that are to one degree or another in the alternative camp of people focused on chronic lyme disease.
Samuel Shor: There are the one school of thought that feels that this is easily identified and easily treated,whereas there I believe in others… one out of every other individual presenting with bonafide real active Lyme disease may be told they don’t have it.
Dr. Shor doesn’t just believe that the tests are bad during the first few weeks of infection - which they are. He goes further, and says the tests are no good… they can’t be trusted… that every negative test is a possible case of Lyme disease.
Samuel Shor: 19 - There are a couple of states here locally, Virginia and Maryland who have passed laws requiring clinicians who order tests for Lyme disease communicate to the patients that if the test is negative, it doesn't necessarily rule it out, that if they are still ill, they ought to continue seeing their clinician.
Taylor Quimby: Bet some doctors don't like that.
Samuel Shor: You're right. They don't want to be dictated to. But unfortunately a lot of clinicians misinterpret… saying this rules out Lyme disease, I was on the Virginia Governor’s task force on Lyme disease a couple of years ago and one of the position statements we made was there is no test that can absolutely rule out Lyme disease.
Again, there’s a certain logic to this. When it comes to people who have had Lyme for a weeks or months, the tests are thought to be 98 percent accurate, but that still misses 2 percent...
But while there is a certain logic to doubt, when you take it too far you wind up in a feedback loop.
Dr. Shor explained to me that given the right signs and symptoms, he would move ahead with antibiotics - even with a negative test.
This in itself, is not necessarily outside CDC recommendations - after all, the antibody tests aren’t helpful with early lyme.
Samuel Shor: What I would do is give a trial, perhaps a 30 day trial of doxycycline or the equivalent and see how they responded to that if they started to feel better or frankly if they started to feel worse, which often occurs early in the process, Those are clinical features that would be supportive of the diagnosis.
If they started to feel better… or worse...
Lyme Disease has been called The Great Imitator, because it can mimic so many other conditions. Doctor Shor doesn’t want to miss a single case, so he’s casting a wide net. And I suspect he’s likely to catch some of the folks that would otherwise fall through the cracks. But I also suspect that he’s going to catch a lot of people who don’t have Lyme disease at all. Because Lyme isn’t the only Great Imitator out there. Here is a list of other diseases that have been given the very same nickname.
Many voices, somewhat distorted: Fibromyalgia. Psoriatic arthritis. Lupus. Sarcoidosis. Multiple Sclerosis. Celiac Disease. Addison’s Disease. Pulmonary embolism. Syphilis. Nocardiosis. Tuberculosis. Brucellosis. Malaria. Intravascular large B-cell lymphoma.
You see what I’m getting at here? Lymeworld is a place where doubt has run amok… Where someone with a set of unusual symptoms, on the far end of the Lyme bell curve, or any bell curve for that matter, can go to a specialty doctor - who will probably err on the side of Lyme disease, send their blood to a specialty lab, with a history of false positives, treat them even if it’s negative, and then confirm the diagnosis regardless of whether the patient feels better or worse.
This is a disease that is both over and under diagnosed. The sort of place where people are liable to be confused… and desperate… and angry… The perfect place for someone to step in, and offer solutions that seem a little too good to be true.
Doug Wine: Lasers. Lasers are by far the most incredible health tool that have been invented in the last... probably forever.
That’s next time, on Patient Zero.
[CREDITS]
Patient Zero is produced, and reported by me, Taylor Quimby.
Projects like this one take time, and resources. If you like what you hear, consider making a $20 donation at patientzeropodcast dot org. You’ll get early access to future episodes, ad-free, and some bonus episodes as well.
Editing help for this episode came from Annie Ropeik, Jason Moon, Justine Paradis, Jimmy Gutierrez, and Nick Capodice.
Sam Evans-Brown is Patient Zero’s senior Producer.
Erika Janik is Executive Producer.
Fact-checking for this episode by Amy Tardiff.
Graphics by Sara Plourde.
Maureen McMurray is Director of Content.
Special thanks to the numerous folks who recorded voices for this episode. And a huge thank you to everybody who generously sent in their lyme story.
And again, thanks to Jonathan Edlow - his book Bull’s eye, was an invaluable resource in putting this together.
If you’ve got questions, concerns, or comments about Patient Zero - we want to hear from you. Email us at patientzero@nhpr.org.
Patient Zero’s Theme was composed and performed by Ty Gibbons.
Additional music from Jason Moon, Blue Dot Sessions, and Disasterpiece.
Credit music by Deerhoof.
Patient Zero is a production of New Hampshire Public Radio.