Health
1:50 pm
Wed June 26, 2013

'The Lyme Wars' That Tiny Ticks Have Wrought

Until 1977, Lyme disease was almost unknown. But in the decades since a Yale rheumatologist first described an unusual cluster of arthritis cases in Lyme, Conn., the disease has become the most commonly reported tick-borne illness in the country. Acute symptoms of Lyme disease commonly include a bull's-eye rash followed by flu-like symptoms.

As journalist Michael Specter explains in "The Lyme Wars," an article for The New Yorker, as the number of cases has increased, so has the controversy surrounding some diagnoses. The tests for Lyme disease are poor, Specter says, the symptoms inconsistent, and the treatments not always effective.

"Twenty-five percent of those people who get bitten never have a rash, or sometimes never see it," Specter tells Fresh Air's Terry Gross. "If you get bitten on the back of your head, you'll never see a bull's-eye rash."

If left untreated, the disease can spread throughout the body, in some cases causing debilitating pain. Much of the current debate about Lyme disease, Specter says, stems from the question of how to treat patients who have pain or other symptoms that persist after treatment.

The phrase "I don't know" is not something easy for some doctors to say. But when it comes to Lyme disease, Specter says, that might be the most apt description of current understanding.


Interview Highlights

On how suburbanization contributed to the rise of Lyme disease

"When you turn exurbs into suburbs and suburbs into something even more populated, you have all sorts of little animals. And mice just love these developments. You cannot delight a white-footed mouse more than by cutting the woods up into little patches ... because it's an easy ecosystem for them to survive in. There are lots of places to burrow, lots of food, lots of hosts — it is convenient. You don't have a lot of hawks flying around, eating them. It's just a kind of nice, relatively safe way to spend your life as a white-footed mouse."

On how he got interested in Lyme disease

"I wrote this piece for a simple reason, which is that during the presidential campaign, Mitt Romney visited one of these special Lyme doctors [who is] very controversial, and made a statement about how Lyme is a terrible epidemic — 'chronic Lyme.' The organized medical world doesn't recognize 'chronic Lyme,' and it seemed a little [like] pandering to Northern Virginia, where Mitt Romney wanted to get some votes. So I wrote a very brief blog post for The New Yorker website on this, and I got about 207 million pieces of hate mail. And I figured there must be something more to this. I mean, it was really something. I've covered a lot of extremely contentious issues in my life, but that was really ... [S]o I just went to my editors and said, 'I think we need to do this.' And I'm glad I did because it is an interesting issue."

On the mix of infections transmitted by ticks that carry Lyme disease

"These ticks don't just carry Lyme disease. They carry at least four other pathogens, and some of those pathogens may be more damaging than Lyme disease, but we don't know enough about all of them yet. One of them is called Babesia. It's sort of like a malarial infection. It's in the same tick; you can get it at the same [time] as Lyme. The same [is true] with anaplasmosis. And if you're getting two or three infections at the same time, you may only be getting tested for one. And there's a really good reason to believe that your immune system is struggling even more brutally — trying to deal with these two similar but different things — than if it was just one thing. So that's a complication that wasn't on the top of people's minds until the last couple of years. ...

"These ticks are kind of remarkable. First, they get on you and they spread some antihistamines and some other little numbing medications so that you don't notice the bite. Then they excrete something called 'cementum,' which is sort of like a glue, so that they can fasten onto you. Then they get their jawbones in there and go for a ride. They often spend five to seven days on a deer or a mouse. Usually it's less on humans, but it doesn't need to be five to seven days for them to transmit [bacteria that cause Lyme disease]."

On checking himself

"I check myself like 71 times a day. One of the problems — I've never gotten over this — I've been writing about medicine for a long time, and I'm always convinced that every illness I write about I have. There have been a lot of those. ... Up in Hudson County where I have a place, it's hard to have a dinner with people where the word 'tick' doesn't come up. ... I have a big backyard. People come over, we have a cookout, and their kids are running off barefoot into the woods, and I'm like, 'No! Don't do that! It's ugly out there!' "

On chronic Lyme

" 'Chronic Lyme' is a vague term [that] means you have the symptoms that linger for a long time. And the symptoms are often terrible pain, flu symptoms, maybe arthritis, terrible headache problems. They are problems that are extremely common in the general public. And when you don't have any Lyme test that's positive, or you don't live in a Lyme-endemic area, it's very difficult for people to take you seriously when you say that you have 'chronic Lyme.' [People with these symptoms] have something — something is going on. I don't think even the most hard-hearted physician (the 'chronic Lyme' folks think all physicians are hard-hearted) believes that they're making up their pain.

"[These patients in pain] want to grasp onto something. It's a lot more comforting to say, 'I have this problem,' than, 'I have terrible pain. I can't get rid of it. No one can diagnose it, and I don't know what to do.' So the 'chronic Lyme' world has kind of a parallel universe. [It has] a special medical organization — the International Lyme Disease society — doctors that kind of treat chronic Lyme and focus on chronic Lyme.

"It's not a syndrome that's recognized by organized medicine. And frankly, organized medicine has been a little recalcitrant, but on this I kind of have to agree with them. If you don't have any evidence of a disease, it's really hard to say that you have the disease."

Copyright 2013 NPR. To see more, visit http://www.npr.org/.

Transcript

TERRY GROSS, HOST:

This is FRESH AIR. I'm Terry Gross.

The fear of ticks is taking some of the pleasure out of walking in the woods and picnicking on the grass in some parts of America, fear of the ticks that cause Lyme disease. The Lyme disease infection rate is growing, and so is the controversy over its symptoms, diagnosis, prevalence and the behavior of the bacteria once it infects the body.

My guest Michael Specter is the author of the article "The Lyme Wars" in the current edition of The New Yorker. He writes about science for the magazine. Lyme disease is the most commonly reported tick-borne illness in the U.S. It's most prevalent in the Northeast and Mid-Atlantic, but it's also in the Midwest, and it's spreading as far south as Florida.

Michael Specter, welcome back to FRESH AIR. Before we get into some of the controversies surrounding Lyme disease and its treatment, let's just start with the basics. What does everybody agree basic symptoms are of Lyme disease?

MICHAEL SPECTER: People agree that it's an infection, that it's an infection passed by a tick. In the Northeast and the Midwest, that tick is called Ixodes scapularis. There are related ticks in other parts of the world, but they're very similar. They agree that if you get the infection, which is a bacterial infection, you will often see a bulls-eye rash on your arm and followed quite quickly by or often accompanied by flu-like symptoms.

That is a sort of telltale hallmark of Lyme disease, and there's pretty clear agreement that if you have that, you need to go get treated right away. There's agreement on how the bacterium spreads. It's spread by the tick, and the tick feeds on small mammals and sometimes big mammals like deer and humans. And after that we start inching away from the areas of agreement, I'm afraid.

GROSS: One more thing before we get to the disagreements. If Lyme disease is spread through ticks, I thought the ticks were mostly on deer. You say it's actually even more on a certain kind of mouse, the white-footed mouse.

SPECTER: Yes, it's a complicated ecological fact that deer are not the main host for the Lyme tick, even though they're universally believed to be so. It's complicated because they are in one stage of a tick's life, and a tick goes through three stages, they do feed on deer. It's just that if you've never had deer anywhere, then it would be difficult to establish Lyme disease. But once you have deer - I have a house up in Columbia County, New York. There are so many deer there, it's horrifying.

And every one of those deer could be made to disappear, and it probably wouldn't affect the rate of Lyme disease at all because once that ecosystem is set up, then small mammals take over, and you've got white-footed mice and possums and chipmunks, just a variety of little animals that you're just never going to get rid of. And so the deer are more at this point a kind of symbol of the prevalence and the spread of the illness, but they are not the main thing to worry about.

GROSS: Kids have always played in wooded areas, and kids have always spent - you know, there's always been kids who spent summers, like city kids who spent summers in wooded areas. And I don't remember anybody getting Lyme disease when I was growing up. You say it wasn't even named and diagnosed until the '70s. Is this like a new disease, or is just that we're becoming aware of it?

SPECTER: We don't totally know. I think it's a little of each. I think if we look back into history at some symptoms, maybe in the '60s and '50s, we'd see things that look like Lyme disease. But we also do know that, you know, after World War II the physical patterns of American life changed, and they changed in a suburban way. Things got chopped up, and that was a very favorable development for ticks and for the animals ticks feed on.

So the first known outbreak was in Lyme, Connecticut, in the early '70s, and people thought it was rheumatoid arthritis, which is a weird thing for a bunch of kids to have. And they finally figured out that it was an infection, and then they eventually figured out what it was an infection of.

I think this is a disease that is probably not brand new, but that its impact is infinitely greater and probably growing at a reasonably rapid rate than ever before.

GROSS: And why does suburbanization become such a favorable environment for the spread of Lyme disease?

SPECTER: Well, you know, I went to college in the Hudson Valley, and that was tragically 35 years ago.

(LAUGHTER)

SPECTER: And there were very few deer. You could - if you were reckless, you could drive as fast as you want as dusk, and you might do bad things, but you wouldn't hit a deer. You wouldn't see a deer. I once visited someone, and I put this in my story, and he said come early because we might see a deer, and it was so exciting. And we didn't.

It is not possible for me to drive through Columbia County now at dusk and not see deer. I drive like a 92-year-old lady in a Model A because these things are big, and they come crashing onto the road, and there are lots of accidents. So you have the proliferation of deer and the proliferation of mice, and you have that because people are living where they didn't live before.

And where you create - where you turn exurbs into suburbs and suburbs into something even more populated, you have all sorts of little animals, and mice just love these developments. You can't - that you cannot delight a white-footed mouse more than by cutting the woods up into little patches.

GROSS: Why?

SPECTER: And they're just...

GROSS: Why do they love that?

SPECTER: Because it's an easy ecosystem for them to survive in. There are lots of places to burrow, there's lot of food, there's lots of hosts. It's convenient. You don't have a lot of hawks flying around eating them. It's just a kind of nice, relatively safe way to spend your life as a white-footed mouse.

GROSS: So you mentioned flu-like symptoms, if you have Lyme disease. But flu, usually flu, it lasts for a few days or maybe a week or two, and then it goes away, and slowly you start to feel better. But Lyme disease can - the symptoms can last much longer than that and be much more devastating. So talk about how Lyme disease can become, like, way more problematic than a case of the flu.

SPECTER: I think there's basically four ways of looking at Lyme disease, and the first way is the way that I always thought was the only way, which is you get bitten, you get this rash that nobody could miss, you take three weeks' worth of antibiotics. And in 99 percent of the cases, you're fine. However, what I didn't realize until sometime recently is 25 percent of those people who get bitten never have a rash, or sometimes they never see a rash.

If you get bitten on the back of your head, you're not going to see a bulls-eye rash. So there's a lot of folks out there who are getting tick bites that do not know it. So that means, you know, they're feeling crappy, and they're having flu-like symptoms, but we all do have these symptoms from time to time.

Sometimes they go to a doctor, and they have a test for Lyme, and the test is often negative because it takes a good three to six weeks for our antibodies to develop so that the tests look for antibodies, our defense system. And our defense system doesn't really swing into gear for a while. So that is a problem.

The other problem that I think is even more pernicious is that some people get treated, and they don't get better. And this is not a large percent, but with the disease, it's growing. Five percent is a bunch of people, and they have tremendous problems. I mean, I've run into so many sort of devastated people who tried everything, who took the antibiotics, who tried all sorts of other both recommended and not recommended approaches, and they don't get better.

And there are, you know, lots of reasons posited for that, and that moves us into the area of controversy. And then I think there's just a fourth group, which is that most controversial of all, and that's a group of people who have symptoms that are like Lyme symptoms, but they have no evidence of Lyme, no biological evidence.

And that's difficult because those symptoms - fatigue, chronic pain, all sorts of arthritic myalgia, those are things that many, many people in this country have. So to say, gee, I have these things, and it's Lyme, without any other evidence, is difficult.

GROSS: Do you know a lot of people who have had Lyme disease or think they've had Lyme disease, and is that one of the reasons why you wrote this piece?

SPECTER: Yes and no. I do know a lot of people who've had it. I know a lot of people who think they've had it. And I wrote this piece for a simple reason, which was during the presidential campaign, Mitt Romney went and visited one of these sort of special Lyme doctors that's very controversial, and he made a statement about how Lyme is a terrible epidemic, chronic Lyme.

The organized medical world doesn't recognize chronic Lyme, and it seemed a little pandering to northern Virginia, where Mitt Romney wanted to get some votes. So I wrote a very brief blog post for the New Yorker website on this. And I got about 207 million pieces of hate mail.

(LAUGHTER)

SPECTER: And I figured there must be something more to this if - I mean, it was really something. I've covered a lot of extremely contentious issues in my life, but that was really - and so I just went to my editors and said I think we need to do this. And I'm glad I did because it is an interesting issue. But I also do know lots of people who have had Lyme, mostly treated and treated well, but lots of people who have these lingering symptoms, and it's very difficult.

GROSS: If you're just joining us, my guest is Michael Specter. He writes about science for The New Yorker. His piece in the current edition is called "The Lyme Wars: the Lyme Disease Infection Rate is Growing, So Is the Battle Over How to Treat It." Let's take a short break here, and then we'll talk some more. This is FRESH AIR.

(SOUNDBITE OF MUSIC)

GROSS: If you're just joining us, my guest is Michael Specter. He writes about science for The New Yorker. His new piece is called "The Lyme Wars: The Lyme Disease Infection Rate is Growing, So Is the Battle Over How to Treat It." So one of the problems with just getting a diagnosis of Lyme disease is that say you haven't seen the telltale target rash, or say you're one of the people who gets Lyme but don't have the target rash because apparently not everybody who gets Lyme has the target rash...

SPECTER: True.

GROSS: So you're not feeling good, you go to the doctor, you get a blood test, it comes back negative. Well, it takes weeks for it to show up. And so if you don't know that, and if your doctor isn't aware of it, you'll get tested negative because you got tested at the wrong time.

SPECTER: That's absolutely true, and it has happened a lot. I like to think it's happening a little less frequently now because Lyme is a little bit less of a rarity, especially in areas like New York, New England, the Midwest. But it does happen, and it's very difficult to prevent because doctors - you also get the opposite, I should say, which is you get a lot of people who go to doctors who think they know a lot about Lyme, and they give a different kind of test.

One of the biggest problems, if not the biggest problem, in dealing with Lyme disease is the diagnostic tests are - they're just not what we would want. They're not excellent. And so you can take the antibody test, and under the right circumstances that works well, but you have to wait. You can also take a test called PCR, which basically is kind of like a Xerox machine for bits of DNA. It blows up DNA so that you can analyze it, and you can detect the actual bacterium rather than the antibodies.

The problem is - and so that's in theory great. It is extremely sensitive; it's often misused. What we need, we really need this, and I think it's possibly the most critical thing; is a diagnostic that would let people know what do they have, what stage of are they at and what they should do.

And there's another thing I haven't mentioned yet which is these ticks don't just carry Lyme disease. They carry at least four other pathogens. And some of those pathogens may be more damaging than Lyme disease. We don't know enough about all of them yet. But one of them is called - one illness is babesiosis, babesia. It's sort of like a malarial infection. It's in the same tick. You can get it at the same time as Lyme. The same with anaplasmosis.

And if you're getting two or three infections at the same time: A, you may only be tested for one; and there's really good reasons to believe that your immune system's struggling even more brutally trying to deal with these two similar but different things than if it was just one thing.

So that's a complication that I don't think was on the top of people's minds until the last couple years.

GROSS: OK, say you find a tick on your body or on your child's body, and you're able to pull out the tick and take the tick with you to the doctor's office. Is that helpful to the doctor, outside of proving that yes, this tick was on my body, so let's do something?

SPECTER: Well, it should be helpful.

GROSS: How is that helpful? Can they test the tick? I mean, what...?

SPECTER: Well, for one thing you can look at the tick and say gee, that's not a Lyme tick. Or that is a Lyme tick. So if it's a Lyme tick, then one of the characteristics of these ticks - and they're very clever little things - they have to affix themselves for a while to suck enough blood to get a blood meal. And while they're doing that, they're injecting whatever bad things they have into your bloodstream.

But it doesn't happen like a mosquito bite. It happens in - it's a matter of some debate how long it takes, but it certainly takes at least 36 hours. So if you check your kids, and he doesn't have a tick when he goes to bed, and he has a tick at, you know, before taking a bath the next evening, and you get the tick out, you're fine. But you need to get the tick out properly, and that means tweezers. Don't just yank it because those guys burrow into you.

And it's - these ticks are kind of remarkable. First they get on you, and they spread some antihistamines and some other little numbing medications so that you don't notice the bite. Then they excrete something called cementum, which is sort of like a glue, so that they can fasten onto you. Then they get their jawbones in there, and they go for a ride.

And they'll often spend five to seven days on a deer or a mouse. Usually it's less on humans. But it doesn't need to be five to seven days for them to transmit whatever it is.

GROSS: Do you check yourself every night?

SPECTER: Oh my God, I check myself like 71 times a day.

(LAUGHTER)

SPECTER: One of the problems, I've never gotten over this, I've been writing about medicine for a long time, and I am always convinced that every illness I write about I have. And there's been a lot of those. And so far I'm O for about 1,000, but it doesn't seem to diminish my fear.

So up in Hudson County where I have a place, it's hard to have a dinner with people where the word tick doesn't come up. You know, you mention kids, and I have a big backyard. People come over; we have a cookout. And their kids are running off barefoot into the woods. And I - no, don't do that. It's ugly out there.

And, you know, I don't want to be over-alarmist, and there are plenty of ways to stop - you can also protect yourself by wearing socks and shoes and insect repellant. It's not - these things don't fly through the air going after you. But you do have to have some awareness, and you do have to pay attention.

GROSS: Have you ever found a tick on your body?

SPECTER: Yes.

GROSS: And you were able to tweeze it off?

SPECTER: I did tweeze it off.

GROSS: Good.

SPECTER: I lived to tell the tale.

(LAUGHTER)

SPECTER: But it wasn't fun, and they're small. They are often described as poppy-seed-sized. I mean, you can notice them...

GROSS: I didn't realize they were that small.

SPECTER: Oh yes. It's not hard to miss them, believe me, and that's part of the problem. It's - it would be really nice if we could miss them, then get a blood test, know that we're infected, get treatment rapidly because it seems to be - and this is true of almost any disease - the sooner you treat something, the more likely you are to get it.

Once it disseminates through the body, then you have all sorts of other problems. And those problems tend to be more complicated.

GROSS: OK, so here's one of the problems, and I think this is one of the sources of debate now in the Lyme disease world. You have a tick, you have a tick bite, that's conclusive whether, you know, you go to the doctor, maybe you've even brought the tick with you. Maybe you're starting to experience, you know, symptoms.

But if you don't show up, if the bacteria, or if the antibodies that is, don't show up in the blood test, do you get the antibiotic or not? Do doctors treat prophylactically if it's not conclusive that you have Lyme? And remember it takes weeks for the antibody to show up in the blood test, but if you've been bitten, do you take an antibiotic prophylactically to make sure you're not going to get Lyme disease?

SPECTER: Yeah, the Centers for Disease Control - and I'll now say the next two words, though I hate them - and Prevention - it ruins the title, but they have changed their policy on this, which is to suggest that if you have a tick bite, and you have some of the symptoms, or you definitely have a tick bite, and you live in an area where there is Lyme, do not even take the blood test. It isn't even necessary to take the blood test. Just treat. Just assume you have it, and treat with antibiotics.

That isn't what they recommend if it's Salt Lake City or someplace where the tick is quite rare, but if you are in New England, or if you're in the Michigan woods or places like that, and you see a tick bite and feel any symptoms whatsoever, the standard, official recommendation is take drugs.

GROSS: And when did that change?

SPECTER: Last couple years - because of this problem of the testing. It's - people would wait around for the test, and, you know, in this country we take too many antibiotics, and it's definitely the case that it would be better to limit them to the 100-percent mark of people who need them.

But when you do the pluses and minuses, they were seeing a lot of people who weren't being properly treated, and it just seemed like the right thing to do in this case, to err on the side of caution, take three weeks' worth of doxycycline or one - there are several other fairly common antibiotics one can take. And that just - you know, this medicine is always a risk-benefit, plus-minus thing.

It's - I wish it was simple. It ain't. And this just seems like the best risk-benefit ratio: take the drugs.

GROSS: Michael Specter will be back in the second half of the show. His article "The Lyme Wars" is in the current edition of The New Yorker. He writes about science for the magazine. I'm Terry Gross, and this is FRESH AIR.

(SOUNDBITE OF MUSIC)

GROSS: This is FRESH AIR. I'm Terry Gross. We're talking about Lyme disease - why the infection rate is growing, and so is the controversy over how to treat it. My guest, Michael Specter, is the author of the article "The Lyme Wars" in the current edition of The New Yorker.

Lyme disease is the most commonly reported tick-borne illness in the U.S. If you become the host to one of those ticks; hopefully, you'll find that tick and remove it before your body is infected. If you are infected, you'll likely soon develop a red bull's-eye shaped rash - like the majority of Lyme patients - that should alert you to go to the doctor.

Lyme disease is treated with antibiotics, and the current standard is, the sooner the better.

What if you don't take the drug? What if you didn't see the tick and you didn't have a target rash, and eventually developed symptoms and by the time you got to the doctors, it's maybe been a few weeks? Does the antibiotic become less effective over time?

SPECTER: Depends who you're talking to. Now we're getting into some murky territory. The official Infectious Disease Society of America position on this is, take it three weeks later, take it seven weeks later, take it eight months later. You may have to take more of it, but it'll work. And clearly, that is true for most people - that even in later stages, where the bacteria might have disseminated and be in your joints, or even in your spinal fluid, in your brain - if you take the drugs for a month or so, you're usually fine. But usually is a word that does not provides a lot of comfort to those people who fall out of the usually, and there are a bunch of those.

GROSS: Some people get IV - intravenous - antibiotic treatments, which is a very heavy-duty approach to antibiotics. That's controversial too, isn't it?

SPECTER: Yes. Because there's a group of physicians who say what you really need are very long-term treatments with direct powerful drugs - IV antibiotics, that's the only way you're going to really kill this bacteria. The problem with that is they've done this several times and the results have been equivocal a couple of times, and a couple of times they've been negative. Even on the equivocal test - and by equivocal, I mean they show a sort of short-term benefit, but not a long-term benefit - none of the people who've done those tests - including the people who will tell you that there was a benefit - recommend IV for any patients, because there's a downside. And the downside is severe infection. One person died on Lyme IV treatment. It's very - it's sticking a needle in your arm for every day for a year is just never something you want to do -unless you have to do it - and there isn't any great evidence that it does better for you than anything else.

However, there are a lot of people out there who are desperate, and they're angry and they think that organized medicine is ignoring them and worse, and they want this stuff, and they get this stuff. And sometimes it makes them feel better - because the placebo effect exists, or for whatever reason - and sometimes it doesn't. But it's very difficult to endorse roots of treatment that we don't have any scientific evidence that says they work.

GROSS: And, of course, when you're desperate you want to try anything because you're desperate - because nothing has worked.

SPECTER: And also, I have to say, I mentioned a couple of people in my story and I talked a lot to people who are rational folks and believe in science and went through the usual treatment and it didn't work, and then they went into this sort of alternative world of no glutens, special diets, and they got better. They're much better, those people. So they don't really care what the statistical evidence is. They care that they can get up in the morning and go to work and play with their families and have a life - which they did not have before they did this. And I totally understand that. It's just that as a scientifically based discipline, if you just recommend treatment based on some people saying they feel better, eh, we don't need to have science anymore. It's magic.

GROSS: On the other hand, if it just means giving up some foods and maybe it'll help you, why not?

SPECTER: Well, I don't think it's damaging to do what those folks are doing. I think it may be damaging for physicians to recommend, in a very broad way, that people change their life dramatically without knowing what the results will be and whether it's effective. And I'd rather see more studies of that, and I think there should be more studies of all of this. There's not enough money spent on Lyme. There's not enough money spent on how to treat Lyme. The long-term antibiotic thing, we haven't even tried enough antibiotics.

If you look at tuberculosis, it's a complicated cocktail of drugs that you take to get better. It's not one drug or another drug, it several drugs. And it takes a while to figure that stuff out. And I think we just have not been as aggressive with this as we ought to have been.

GROSS: If you're just joining us, my guest is Michael Specter. He writes about science for The New Yorker. His new piece in the current edition is called, "The Lyme Wars," and it's about why the Lyme disease infection rate is growing and why the battle over how to treat it - the controversy over how to treat it - is growing too.

You mentioned earlier that one of the reasons why you wrote this piece is that when Mitt Romney was campaigning in a part of the country that has a high Lyme disease rate, he referred to the importance of, you know, figuring out how to treat chronic Lyme disease. And a lot of people challenge whether chronic Lyme disease even exist or not. Let's talk about why the existence of Lyme disease is being debated.

For the people who say chronic Lyme disease exists, how do they define it?

SPECTER: Well, I think the first thing - or the easiest way to look at this - is to look at what we do know. We do know that there are people who are treated and don't get better. That doesn't seem to be an area of dispute. There's dispute about how many people that is, but those people now are considered to have something called post-treatment Lyme disease syndrome. And that is a recognized condition for people who don't get better.

The medical establishment feels comfortable with that because it's a sort of an empirical data-driven reality. Chronic Lyme is a vague term - which means you have the symptoms that linger for a long time. And the symptoms are often: terrible pain, flu symptoms, maybe arthritis, terrible headache problems. They are problems that are extremely common in the general public. And when you don't have any Lyme tests that's positive or you don't live in a Lyme endemic area, it's very difficult for people to take you seriously when you say you have chronic Lyme. They have something. Something's going on. I don't even think the most hardhearted physician - and the chronic Lyme folks think all physicians are hardhearted - believes that they're making up their pain. It's just want to grasp onto something. It's a lot more comforting to say, I have this problem, than I have terrible pain, I can't get rid of the, no one can diagnose it and I don't know what to do.

So the chronic Lyme world has kind of a parallel universe. There's a special medical organization - the International Lyme Disease Society - doctors that kind of treat chronic Lyme and focus on chronic Lyme. And it's not a syndrome that is recognized by organized medicine. And frankly, this is one - I think organized medicine has been a little recalcitrant - but on this, I have to kind of agree with them. If you don't have any evidence of the disease, it's really hard to say you have the disease.

GROSS: If you're just joining us, my guest is Michael Specter. He writes about science for The New Yorker. His piece in the current edition is called "The Lyme Wars: The Lyme-Disease Infection Rate is Growing, So is the Battle Over How to Treat It."

Let's take a short break here and then we'll talk some more. This is FRESH AIR.

(SOUNDBITE OF MUSIC)

GROSS: My guest is Michael Specter. He writes about science for The New Yorker magazine and his piece in the current edition is called "The Lyme Wars: The Lyme-Disease Infection Rate is Growing, So is the Battle Over How to Treat It."

You write about a couple of people who have or had Lyme disease, weren't able to find effective treatments and ended up becoming researchers in the Lyme disease field. One of them is Kayleigh Ahern. And she was 12 years old when she got bitten by a tick. What was the problem that she had, you know, and how long did that last?

SPECTER: Well, this was a classic case of something that I think happens a lot - which is she got bitten by a tick. Her mom is a scientist. Saw the tick, went to the doctors with her child and the tick. Said here's the tick, here's my child, treat her. And the doctors said - and remember, this was in 2002 and things change - but the doctor said no, I'm not going to treat her. If she starts getting sick bring her back, I'll treat her, but you don't treat just because she was bitten by a tick. Well, she took her daughter home and she waited for that rash that everyone gets, and Kayleigh never got the rash. Kayleigh went to high school. Kayleigh became an All-American swimmer in high school and in college. She had a perfectly healthy life until her freshman year in college, when she totally fell apart - and she had crippling headaches, searing muscular pain, just horrific bouts of depression, just incredible illnesses that she had never had before.

She didn't know what. She tried different things. She finally went back to a doctor and had a Lyme test again and it was positive. And I think - we don't know this for a fact - but it would probably have been positive for, you know, the preceding seven years. So it had disseminated in her body. It had gotten all around. And so they gave her the three weeks of antibiotics and it did nothing. Then they gave her three more weeks, and that did nothing. So then, she started taking long-term antibiotics. She didn't do IV because she didn't want to, but she took eight months worth of oral antibiotics - which is a lot. It didn't help. And this is - she's kind of an impressive young woman. She's not a loon by any means. She cares about science, and she started doing some other things. And one of the things she did was use a machine called a Rife machine.

A Rife machine is, it's an electromagnetic device that supposed to be able to kill bacteria. There's no evidence that this works. I mean there is really no evidence, and I don't think you'd get very many legitimate doctors out there saying - you ought to use a Rife machine. However, if you go on that thing called YouTube, you'll see lots of people using Rife machines to treat their Lyme. And so she did that and she cut back on gluten and she got better. Now she's the first to say it could've been the placebo effect. It could've been anything. The symptoms could've just resolved by themselves. She doesn't care. All she cares about is she was so sick she had to withdraw from school and now she just graduated a month or so ago and she's going to go to graduate school and pursue research in - of all things - Lyme disease and she's better. And she has bad days - pain and stuff, but they're, they're manageable and they're not a lot about these. So this is just the kind of thing that I've heard a lot. Very similar symptoms, similar resolution, and you can't just say gee, this is all similar, it has to be the same thing, but it sure doesn't seem like a coincidence.

GROSS: And, you know, this really gets to why I think some people with Lyme disease, or some people who think they have Lyme disease, are so angry. I mean she was told - and this was in 2002, it's not like it was in 800 - 1840 or something. It was in 2002, and she was told him I'm not going to treat you unless you get the target rash, which she never got. And years later, when she got tested for Lyme disease, it tested positive.

So if doctors could have been so wrong then - if the CDC only a couple of years ago - changed its protocol and said, if you get bit by a tick in a Lyme disease infected area, you should treat with antibiotics right away, then, you know, up until then, there was reluctance to treat immediately. So given how much we don't know, still, why wouldn't people have cause for skepticism about current protocols?

SPECTER: Well, they should. And I think this is a bigger problem than Lyme disease, and it has something to do with medicine and our approach to science in our society. We are used to doctors solving our problems with low hanging food, infectious diseases and some simple operations, and take this pill and you don't, you get better, and antibiotics. And those things have been miraculous, and they've worked. As we tend to live longer lives, we live more complicated lives and we have more complicated diseases. And so we are not - I do not think the paradigm of: Go to the doctor and the doctor will solve your problem, is the same one that our parents expected. And it's very frustrating when people in that field act as if it is - which they sometimes do.

I know a lot of great doctors, but some of them are not as comfortable saying, I just don't know as you would like them to be. And I, you know, this is drives a patient crazy. And just getting this sort of oh, go home - it belittles your pain, it belittles your suffering, and it's a problem in a lot of areas of medicine right now because they are not solutions to a lot of the - the significant chronic ailments that we are experiencing.

GROSS: One of the people you interviewed for your piece is David Roth who was diagnosed with Lyme disease and one of the other bacteria that these ticks can carry, which is babesiosis. And so what was his story in terms of his symptoms and treatment?

SPECTER: He is an interesting man. He's incredibly articulate and prosperous and he got sick one day. He was very healthy, one of those guys who went to the gym all the time, hard driving, you know, investment banker. Incredible pain, incredible night sweats. Just agony. Yet CAT scans and MRIs and PET scans, and finally he was diagnosed with Lyme and with babesia, those two things together.

Then he went through the song and dance that lots of people I know go through, which is a traditional doctor will say to you, OK, now that we know that you have this, we're going to give you three weeks' worth of antibiotics. Because that's what we know science can do. We have data for that. So he did that and it didn't work.

And so his doctor said to him basically - and I actually understand this - he said you should explore what you want to explore and I'll help you do that; I can't go beyond what evidence-based science tells me to do. So he went to another physician who has treated thousands of people like this and is very controversial. He did with Roth what I have described in our conversation, which is kind of try to starve the bacteria and have him not eat sugar or grains or any of those things that could cause the stimulation of insulin production in our body.

And Roth is good now. I mean, he's really healthy. He's now leading an organization called the Tick Borne Alliance. And what his big thing is, is to get better diagnostic tests. He said to me, and he says to everyone I think, the only way we're going to get science to solve this problem is to have tests that work. And our tests kind of suck. And so he's on an NIH committee right now to try and improve that, and I think that that disease group is lucky to have him. Though he might not want to characterize it that way.

GROSS: So let's talk about prevention a little bit for those of us...

SPECTER: Yeah.

GROSS: ...who live in areas where there is Lyme disease or who visit those areas frequently.

SPECTER: Mm-hmm.

GROSS: So check yourself for ticks.

SPECTER: Yup.

GROSS: And check the backs of anyone in your family because you can't see that very well yourself.

SPECTER: They like the backs of knees.

GROSS: Mm-hmm. OK.

SPECTER: This is a family program, but I think I can say this. They like groins. So check those. Check a kid's head because, you know, a tick can get in there and you won't necessarily see it. If you use insect repellent or things that will prevent mosquito bites, they will usually keep ticks away. And socks and shoes are really warranted if you're going in the high grass.

Just be careful and remember that the one kind of lucky break here is a tick bite is not an instant infection. It is almost never an infection until it's been biting you for a couple days. So if you're vigilant, you can do a lot.

GROSS: And what are the parts of the country that have a lot of these ticks?

SPECTER: New England, New York, the northern - the sort of woods in Michigan and Wisconsin. It's spreading now to the southeast - Florida, Virginia, California. They think it's spreading for a variety of reasons - mobile animals, birds as hosts. But it is spreading. There's no question that some of the increase in cases is that people are more aware, but much of the increase is that there's just more of them.

GROSS: So since you live in upstate New York which is a big tick territory, do you ever have reservations about living there? Do you ever think I'm going to move to Manhattan?

(LAUGHTER)

GROSS: There's not a lot of grass.

SPECTER: Well, I have a place in Brooklyn that I spend more time than upstate, and I will say that one of my colleagues, upon reading my story, said, wow, this would be a fantastic week to buy property in the Hudson Valley.

(LAUGHTER)

SPECTER: So there's that. But no, I don't. I don't have that. I think if you're vigilant you're pretty good.

GROSS: Michael Specter, thank you so much for talking with us.

SPECTER: Oh, always a pleasure.

GROSS: Michael Specter writes about science for the New Yorker magazine. His article "The Lyme Wars" is in the current edition. You'll find a link to the article on our website freshair.npr.org. Coming up, jazz critic Kevin Whitehead reviews a new album of Ellington compositions by pianist Aki Takase. This is FRESH AIR.

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