Update On Diagnosing And Treating Lyme Disease

MR. FRANK SESNO

11:06:54
And thanks for joining us. I'm Frank Sesno, sitting in for Diane Rehm today. I'm the creator of Planet Forward and director of the School of Media and Public Affairs at the George Washington University. It's my pleasure to be with you today. Well, 30 years ago, Lyme disease was practically unheard of. But now it's a very real threat for people who spend time in and out of doors. Progress has been made in efforts to diagnose and successfully treat the disease, but challenges certainly remain.

MR. FRANK SESNO

11:07:20
So joining me to talk about Lyme disease and what we know about it, what's being done about it, what you can do to avoid it, presumably, Dr. John Aucott. He's a clinical researcher and founder and president of the Lyme Disease Research Foundation. From a studio at WWNO in New Orleans, Monica Embers of Tulane National Primate Research Center and from the studio at NPR in New York City, Pamela Weintraub is senior editor at Discover Magazine.

MR. FRANK SESNO

11:07:46
But, first, before we talk to our panel, joining us by phone from Atlanta is Dr. Paul Mead. He's chief of epidemiology and surveillance for the CDC's Lyme disease program. Dr. Mead, thanks for joining us.

DR. PAUL MEAD

11:07:58
Good morning. Nice to be with you.

SESNO

11:08:00
Good morning. Well, last year the CDC released figures which suggested that many more people had been infected with Lyme disease than had previously been reported. So what are the numbers, the statistics? What do we know or think we know at this point?

MEAD

11:08:13
Well, I think to understand these new estimates, you first have to understand a little bit about how we normally count Lyme disease cases. So Lyme disease is a nationally notifiable condition. And what that means is that health care providers and, in some cases, laboratories are supposed to report suspected cases to public health officials in states and counties. And these health officials then compare the details of these cases with the standard case definition. And if the case meets that definition, then they count it as a confirmed case.

MEAD

11:08:47
Now, states share that information with CDC and we compile national figures on it. So over the last four years or so, there have been on average about 30,000 cases of Lyme disease reported to CDC in the United States.

SESNO

11:09:03
30,000 over four years, or per year for four years?

MEAD

11:09:06
Per year, per year. So now this data is very helpful in some ways. It helps us know where the disease is common and where it is rare. Who gets it, is it older people or younger people? And generally, you know, are the trends going up or are they going down? But the reality is, is that not every case is reported. And, if I liken it to something that's a little bit like a rain gauge that someone might put out in their yard, and it gives you an idea of whether it rained last night and, if you compare it with a friend's, you could figure out whether it rained more in your yard than someone else's.

MEAD

11:09:43
But if you want to know the total amount of rain that has fallen on your yard, you need additional information to do that because obviously it doesn't all fall in your rain gauge.

SESNO

11:09:53
Right.

MEAD

11:09:54
And so the same thing occurs with surveillance. And I should point out, this isn't just Lyme disease -- all diseases are underreported to some degree.

SESNO

11:10:03
Just because people don't always come forward or we don't accurately diagnose them.

MEAD

11:10:06
Right--well, not so much accurate diagnosis, more really just reporting. By definition, an underreported case is a, you know, a case that meets the criteria for reporting but just doesn't end up getting reported.

SESNO

11:10:20
Dr. Mead, just so we do this -- just in case someone who's listening doesn't know what Lyme disease is, where it comes from, what it looks like -- give us 30, 40 seconds on, what is Lyme disease?

MEAD

11:10:33
Well, Lyme disease is an infection caused by a spirochete, which is a spiral-shaped bacterial called borrelia burgdorferi. The most common manifestation of the disease is a rash that develops -- a fairly characteristic rash, at the site of a tick bite -- which is often accompanied by fevers and chills and muscle aches.

SESNO

11:10:55
And commonly delivered to us courtesy of a tick.

MEAD

11:10:59
That is correct. In particular, black-legged ticks, the black-legged or deer tick in the Northeastern United States and, along the West Coast, there's a western black-legged tick, which is also sometimes infected with the organism.

SESNO

11:11:13
So what areas of the country is this most frequent?

MEAD

11:11:17
Yeah, the cases are by far most common in the Northeastern United States, and in the Upper Midwest, so Wisconsin, Minnesota, and then essentially from Northern Virginia up into Maine. Those states account for over 95 percent of Lyme disease issues.

SESNO

11:11:35
Now there's some debate as to whether the Southern states are sharing this, immune from it, having another kind of tick-borne disease. What do we know about what's happening in the South?

MEAD

11:11:45
Yeah. So Lyme disease is -- well, the South is obviously a very large area, but the occurrence of the disease is either somewhere from rare to very rare to potentially non-existent in some areas. And we have several lines of evidence that support this. The first is of course the human data, which shows very few cases there. But we also have data from dogs. And to put this in perspective, in the Northeast, dogs are very frequently exposed to the Lyme spirochete, up to one in four dogs may test positive for having been exposed to the disease, though they rarely get infected.

MEAD

11:12:22
Whereas, in the Southeast, dogs are almost never positive for the disease. So it's not just humans that don't get it in the South, it's also dogs don't get it.

SESNO

11:12:31
Why? Why is that?

MEAD

11:12:32
Well, that's a good question. And it's complicated. I think the, you know, the tick that transmits the disease is potentially found in the Southeast. However, they're very, very rarely infected. And this may have to do with them feeding on different hosts and having very different behaviors. It's not just the presence of the tick. It's the presence of infected ticks, and frequently infected ticks, and those ticks finding humans that really determines whether or not people get sick.

SESNO

11:13:02
What other disease, in addition to Lyme disease, are ticks or black-legged ticks known to carry?

MEAD

11:13:07
Well, black-legged ticks can transmit several other diseases. There's another bacterium called anaplasmos phagocytophilum, which is a mouthful, a parasite called babesia, and then also a virus, deer-tick virus or Powassan virus, as it's sometimes called. So these diseases occur in the same areas where Lyme disease is common. Now, going back to the South, there is another disease that can look a bit like Lyme disease, called southern-tick associated rash illness or Masters' disease, and this disease is actually associate with a different tick, the Lone Start tick, which commonly bites people in the South.

MEAD

11:13:49
But it's not caused by -- it's not Lyme disease. We don't know what causes it, but we know it's not Lyme disease, because there's been a lot of effort to trying and sort that out.

SESNO

11:13:59
Would you just talk about ticks for a minute, which may be one of God's most disgusting creatures, I'm sorry to say.

MEAD

11:14:04
Oh, how could you say that?

SESNO

11:14:05
Ah, it's just awful. I have a personal thing with them. But I was reading an article recently about ticks and seeing that climate change, the lack of very cold weather, has increased their populations. I read a fascinating piece on the disappearance of moose and how they are being ravaged by ticks in certain parts of the country. What's happening with this creature?

MEAD

11:14:30
Well, you know, I think there are several trends here. And you sort of touch a little bit on climate change. But it's clear that the abundance of ticks, particularly in the Northeast, has changed over the last 50 to 100 years. And there are probably several factors that help drive that. Part of it is the regrowth of forest in the Northeast, which provides good habitat for the ticks and for the small mammals that are the actual source of the infection, and also for deer. Deer populations have also increased. And then, of course, we have people increasingly building in these areas and moving into these -- sort of suburbanization of the forest, if you will.

MEAD

11:15:13
And all of this basically brings more people into contact with more infected ticks. And that helps drive the disease up.

SESNO

11:15:21
Dr. Paul Mead, chief of epidemiology and surveillance for the CDC's Lyme disease program. Thank you very much for your time this morning.

MEAD

11:15:26
My pleasure. Thank you.

SESNO

11:15:27
Appreciate it. Well, now we're joined by our panel, Dr. John Aucott. He's clinical researcher, founder and president of the Lyme Disease Research Foundation. Monica Embers, Tulane National Primate Research Center, the Division of Bacteriology and -- let me see if I'm going to get this right, Monica -- parasitology. Did I pronounce that correctly?

DR. MONICA EMBERS

11:15:45
That's correct. Very good.

SESNO

11:15:46
And Pamela Weintraub, senior editor at Discover Magazine. Dr. Aucott, what do you make of what we just heard from the CDC in terms of the spreading of ticks, the -- as a result of these other conditions -- and the regionality of Lyme disease itself?

DR. JOHN AUCOTT

11:16:02
It certainly fits with what we see in clinical practice, that the number of cases increases year-to-year: the recent estimate, you know, up to 300,000 new cases a year across the United States. It's a common illness that primary care physicians see up and down the coast. The hyperendemic areas are the Northeast, Mid-Atlantic and upper Midwest. But there are cases from the West Coast as well. And so it's something that all physicians need to be aware of.

SESNO

11:16:30
Talk about the difficulty in diagnosing Lyme disease.

AUCOTT

11:16:33
So there's two problems with diagnosis. The biggest is the currently available blood test for Lyme disease, which is based on antibodies, doesn't turn positive for the first few weeks of infection. So there's this window where the test is falsely negative, at the crucial time when you want to make an early diagnosis. That's one. The second is the telltale rash -- the target lesion that people are used to seeing pictures of -- actually, typically doesn't look like a target lesion.

SESNO

11:16:59
So I got a tick bite last summer -- actually two at once, all right? True confessions here. And I got a rash. And I went running to the doctor. And he put me on antibiotics. I didn't know whether I had Lyme disease. I wouldn't have known for a while, right? Did he do the right thing?

AUCOTT

11:17:13
So you wouldn't know initially if it was just a reaction to the tick bite or the actual lesion of Lyme disease, which typically takes 7 to 10 days after a tick bite. You wouldn't know without watching it. And frequently, that's what we tell patients to do, watch the area where the tick bite was and see if the rash develops. That's one approach. Some people want to take prophylaxis and treat the tick bite with a single dose of doxycycline. That's called prophylaxis.

SESNO

11:17:40
Monica, what's the research you're doing on this?

EMBERS

11:17:43
A lot of my research is focused on this condition called post-treatment Lyme disease syndrome. And there are a number of patients who, after having been treated with the proper regimen of antibiotics, continue to have symptoms post-treatment. So I'm interested...

SESNO

11:18:00
Symptoms like joint pain and what else?

EMBERS

11:18:03
They're typically very subjective symptoms...

SESNO

11:18:05
Mm-hmm.

EMBERS

11:18:05
...like aches and pains, headaches, fatigue and cognitive impairments. So I'm interested in trying to figure out the etiology or cause of this post-treatment Lyme disease syndrome.

SESNO

11:18:19
And how widespread is this kind of thing, where people complain of symptoms long after they've been treated?

EMBERS

11:18:26
Well, there are different numbers that have been reported -- anywhere from 5 percent to maybe up to 20 percent. And Dr. Aucott has actually done a very good job of characterizing these patients.

SESNO

11:18:38
We will talk more about those patients, about Lyme disease, what we know and what we don't know, and bring Pamela Weintraub into the conversation in just a moment. You're listening to "The Diane Rehm Show."

SESNO

11:20:00
Welcome back to "The Diane Rehm Show." I'm Frank Sesno sitting in for Diane today. We're talking about Lyme disease, what it is, what we know about it, how to prevent it with Dr. John Aucott, clinical researcher, founder and president of the Lyme disease Research Foundation, Monica Embers, Tulane National Primate Research Center and Pamela Weintraub, a senior editor at Discover Magazine. Pamela, to you, as a former patient and someone who wrote a book called "Cure Unknown" a few years ago, would you talk about what your experience was and has been and some of the alternate therapies that you've run into?

MS. PAMELA WEINTRAUB

11:20:35
Well, my experience has been that Lyme disease has become so controversial. And many -- there's been such a huge argument over what is Lyme disease and who has Lyme disease and how to treat Lyme disease that a lot of patients -- many, many patients who actually have Lyme disease, when they go to the doctor they find themselves swept up into this controversy and don't get a diagnosis. They may not be completely classic.

MS. PAMELA WEINTRAUB

11:21:07
There is -- as Dr. Mead said, there's a textbook case surveillance definition of Lyme disease, but not -- for example, many people don't get the rash or don't see the rash. They may have a rash but not...

SESNO

11:21:22
So the -- let me just stop you for a minute. So the controversy is whether or not you actually have Lyme disease or...

WEINTRAUB

11:21:30
There are two controversies. One is, what is Lyme disease? So for example, do you need a bulls eye rash to have Lyme disease or might you have a circular rash or might you have a rash that's so pale that nobody sees it or it can be on the top of your head. A lot of people never...

SESNO

11:21:48
And this matters because when you go to your doctor, if your doctor subscribes to one formula or another, he or she may not diagnose you or misdiagnose you?

WEINTRAUB

11:21:59
The doctors may be ill-informed about the criteria or the bar that a patient needs to meet in order to be treated for early Lyme disease when the disease is largely curable and -- or most likely to be cured. And then the other controversy about Lyme disease is how to treat it. It's whether patients are able to be cured by the relatively short-term treatment in the treatment guidelines put out by the Infectious Diseases Society of America.

WEINTRAUB

11:22:39
And, as you can see, if you're talking to -- from Dr. Aucott's research, a lot of patients fail that treatment.

SESNO

11:22:47
Dr. Aucott, what is Lyme disease? Can you address what Pamela is saying here and what is the guidance and the information that goes out to doctors?

AUCOTT

11:22:54
Yeah, I think the straightforward textbook description of Lyme disease doctors get -- but they don't get the atypical forms of presentation and they certainly don't get what we're talking about today, this post treatment Lyme disease Syndrome. Doctors are very ill-informed about that. In fact, there's still controversy not appropriate but controversy whether it exists. I would tell you that they did exist.

SESNO

11:23:15
Why? Why? Why?

AUCOTT

11:23:17
Well, because there's no good blood test for it, first of all. Second, the symptoms overlap with other conditions, fatigue, achiness, cognitive complaints look like other conditions as well. So there's still a lot of controversy, but I think that should end. The research is now telling us that post treatment Lyme syndrome exists, it's real. It's not just the aches and pains of life. It's not just people that are depressed. It's a real illness that follows antibiotic treatment of Lyme disease.

SESNO

11:23:44
Monica Embers, do you want to join in?

EMBERS

11:23:46
Yes. I think in light of what Dr. Aucott said about having a blood test for distinguishing between an active infection and someone who has been clinically and biologically cured, that would be essential. And that's something that we and others are working very hard to try to put together.

SESNO

11:24:10
So that...

EMBERS

11:24:11
But it's very difficult.

SESNO

11:24:12
...so that takes us to the second controversy that Pamela Weintraub was talking about, which is how to treat it. And Pamela, do you want to talk a little bit more about that? What is the controversial component of how to treat it?

WEINTRAUB

11:24:24
Well, the controversial component is how long should people be on antibiotics. And it's a very, very difficult problem because quite a number of people do fail the treatment -- the initial treatment. A number of people go on antibiotics for quite a bit longer and they get better, but others don't. And there's a lot of devastation out there in the Lyme community, people that haven't gotten the treatment they need, people that have gotten a huge abundance of -- or over abundance of treatment and remain sick.

WEINTRAUB

11:25:08
And there's a lot of confusion and I think, you know, we have to look to our scientists to figure out what's going on with this population. A lot of these people have been dismissed as having a contested illness. And they've been very -- they've become rejected patients who are stigmatized. They...

SESNO

11:25:27
Dr. Aucott, let me walk through some of this with you. If you're diagnosed -- if you have Lyme disease and you don't receive medication ,what happens?

AUCOTT

11:25:36
Your rash goes away without treatment and then more than half of the time without treatment the Lyme disease reappears months or years later usually with arthritis. So it is...

SESNO

11:25:46
So we can -- it's not just aches and pains. It becomes arthritis?

AUCOTT

11:25:49
If you don't get treated initially, more than half the people get arthritis.

SESNO

11:25:52
And what else? What about this exhaustion that you hear from people who suffer from it? What about disorientation some people report?

AUCOTT

11:25:58
They often -- patients complain of fatigue and it can be profound fatigue. It's not just, you know, the fatigue you and I have every day. It's profound fatigue, achiness and cognitive complaints. And that's without treatment. Some of those same symptoms, the cognitive complaints, the fatigue occur after the people who are treated as well.

SESNO

11:26:17
And Monica, with treatment, what are some of the things that people will complain about down the road?

EMBERS

11:26:23
With treatment I think you just have these subjective aches and pains that are characteristic of post treatment Lyme disease Syndrome. And certainly people can have cognitive problems as well.

SESNO

11:26:37
When you say cognitive problems, what do you mean?

EMBERS

11:26:39
They're fairly nonspecific. Everybody experiences it differently. Difficulty thinking, stuttering, you know, just inability to focus or concentrate and...

SESNO

11:26:53
So Dr. Aucott, what then is the recommended treatment and is it long term antibiotics? Are there -- there are risks to that too.

AUCOTT

11:27:03
So that's the $6 million question. The answer is we don't know. I think one of the reasons we don't know is because we don't have a good handle on how the body responds, their immune system responds. And that's some of the research we're doing. We collaborate with Dr. Mark Soloski at Johns Hopkins. We're looking at the immune response. It's not just the organism. It's the way your immune system responds to the infection. Probably it's the balance of those two things that determines who gets better and who doesn't.

SESNO

11:27:28
Pamela, how would you characterize the quality of care for people with Lyme disease in this country?

WEINTRAUB

11:27:34
Well, the quality of care for people with Lyme disease is often very poor. If you have Lyme disease and you have a very classic case and you go to a doctor who can recognize it and treat you early with the short course of antibiotics, you have a very good shot of doing extremely well and not having another problem. But if you fall between the cracks, your test is negative or you don't see your rash or you have any uncharacteristic presentation, and many, many people do, in addition to having other co-infections from the tick, like for example Bebesiosis, then these people often wander from doctor to doctor to doctor.

WEINTRAUB

11:28:18
I find that -- because I keep in touch with a lot of Lyme disease patients through my Facebook page and because I'm always interviewing them, I find that a lot of them have become -- are completely broke. They have spent every penny they have trying to get well. They have lost their houses...

SESNO

11:28:35
Why, is this not covered by health insurance?

WEINTRAUB

11:28:39
Well, it's covered by health insurance if you have early Lyme disease and you have the standard treatment and it works. That is covered. But once you go out into the wild west of what this has become, it's not covered because there is a great deal of controversy over the treatment. So...

SESNO

11:28:59
Dr. Aucott.

AUCOTT

11:29:00
Yeah, I think we keep hitting on -- there is no safe place for doctors and patients to kind of get out of the controversy right now. And if there were a safe space, I think we could come up with more standardized and integrative approaches to care of these patients. That's really what is missing, and I agree with Pamela. The patients really don't know what to expect, what kind of treatment is best. We need a more organized and scientifically based way to take care of patients.

SESNO

11:29:29
Monica, Lyme disease is the most common disease that people get from these black-legged ticks. It's the one we hear the most about but there are others. Could you talk about that?

EMBERS

11:29:41
There are other diseases coming from the black-legged ticks?

SESNO

11:29:44
Yeah, from...

EMBERS

11:29:47
Yeah, as was discussed before, there's a protozoan or a parasite called Bebesia and bacteria called anaplasma and also the potential to spread an encephalitis-causing virus called Powassan virus. So...

SESNO

11:30:04
So do you test for these diseases as well, Dr. Aucott?

AUCOTT

11:30:07
In the appropriate circumstances. Bebesia has been much more of a problem up in the northeast, but it's certainly moving down into the mid Atlantic. So in the appropriate cases we test for Bebesia. There's newer bacteria being also described, Borrelia miyamotoi, which we don't have a test for yet. So some of these are really emerging pathogens that we don't even have tests, which again gets to how complex this field has really become.

SESNO

11:30:32
So let me talk again and ask all of you to weigh in on this. We'll take a break in a couple minutes and then I want to take our viewers' calls and questions. And we can be reached at 1-800-433-8850. That number again is 1-800-433-8850. Or you can email us at drshow@wamu.org. This apparent proliferation and expansion of the tick population, propelled to some extent by the expansion of the deer population. They also hitch a ride on mice. In the south they hitch a ride on reptiles. Are we seeing more ticks and more tick borne disease, Dr. Aucott?

AUCOTT

11:31:09
Absolutely. Absolutely. There -- these are common diseases now along the east coast of the United States.

SESNO

11:31:15
It didn't used to be?

AUCOTT

11:31:16
Didn't used to be. I mean, this disease emerged when I was a medical student in the 1970s. Before then it was unheard of.

SESNO

11:31:23
And what about in other parts of the country that have not commonly had ticks or had tick-related diseases?

AUCOTT

11:31:28
They all -- you know, in the upper Midwest it emerged at the same time. Now in Europe it was recognized earlier in the century. So the disease was present actually not known to be due to Borrelia but was present in Europe as well. Even the ice man, that was reported in the National Geographic magazine, thousands of years ago that mummified ice man had Lyme disease. So...

SESNO

11:31:49
Had Lyme disease?

AUCOTT

11:31:49
Yeah, it's been around for thousands of years.

SESNO

11:31:52
I'm Frank Sesno and you're listening to "The Diane Rehm Show." If you'd like to join the conversation again, it's 1-800-433-8850 or send an email to drshow@wamu.org. I'd like to join -- to ask Monica Embers and Pamela Weintraub to join this conversation on this idea of the proliferation of the tick population and what it means. Monica, from your perspective at the Primate Research Center.

EMBERS

11:32:19
I think that the tick population has remained pretty steady and there's been no decline for sure. In the south we have -- as was mentioned, we have plenty of these black-legged ticks but they don't seem to be carrying the Borrelia burgdorferi bacteria. And I think also we talked about climate change. With the arming temperatures, there's an increase in the vegetative cycle so, you know, the ticks can be out questing for longer periods of time throughout their natural cycle, which may lead to more cases of humans being beaten by the ticks.

SESNO

11:32:57
Pamela.

WEINTRAUB

11:32:59
Well, I think that there's been a great proliferation of the disease. Obviously the ecosystem that is hospitable to Lyme disease has been moving down. It moved down from the northeast. Now it's all the way down, I believe, into the Carolinas. And for the black-legged tick there is -- as Dr. Mead said, there is the illness from the Lone Star tick down in the south that people are still researching. And it seems to be making people sick, although there needs to be a lot more -- there needs to be many more studies on that.

WEINTRAUB

11:33:40
Out in California in San Francisco there was a recent study published by CDC and emerging infectious diseases on all of the parks in the Bay Area there. They -- all of the ticks there have carried Borrelia burgdorferi and Borrelia miyamotoi. And so that was a shocking study. Maybe not as much as in the northeast but it's out there.

SESNO

11:34:03
So more ticks carrying more disease in more places. Let's go to the phones now and Allison joins us from Dallas, Texas. Hi, Allison.

ALLISON

11:34:12
Yes, hi. thank you for taking my call. I have a friend and co-worker who in the mid '80s in Richmond, Va. contracted Lyme disease but the doctors didn't believe that she had it. So she was doing all kinds of research and that's what she came up with. And so they finally confirmed it and she remember the bulls eye. But -- and she was in Hopewell. Now she's in Arizona and I'm in Texas. But I wondered if -- it seems like there's a little bit of disagreement about the range of that -- of Lyme disease, and I wonder if it's gotten any better.

ALLISON

11:34:47
If she were in Hopewell now and had, you know, started to feel the way she felt, would it be any better if the -- is there anything -- you know, how much is this improving among doctors? They didn't know anything. She had to push it her whole life.

SESNO

11:35:02
Yeah, great question. Dr. Aucott.

AUCOTT

11:35:04
So she's absolutely right. In the mid '80s Lyme disease wasn't widely recognized. In Virginia it is now. It has moved into northern Virginia and Virginia. So I'm hopeful now that it would be recognized, although there's still a lot of need for education. Virginia's been running different programs to educate patients and physicians. So I think there's progress.

SESNO

11:35:25
Pamela.

WEINTRAUB

11:35:27
Well, I think that people still have trouble, even right here in the northeast. You know, when my family got sick in Chappaqua, N.Y. back in the 1990s, we had very classic presentations of Lyme disease. My son had an Erythema-Migrans Lyme rash. He had ultimately -- he had eight of ten bands positive, which are markers for the disease on his tests from Quest Labs, which is a very mainstream lab.

WEINTRAUB

11:36:00
Yet we went from doctor to doctor who said his illness couldn't be Lyme disease. And what shocks me when I talk to people...

SESNO

11:36:06
So they actually said his illness couldn't be Lyme...

WEINTRAUB

11:36:09
Well, afterwards -- after he was treated and -- yeah, in the beginning they said it couldn't be Lyme disease until finally he had a positive test. He fell through the cracks where at first his test was negative, as Dr. Aucott mentioned. And so until he finally had a positive test, people said it couldn't be Lyme -- the doctors said it couldn't be Lyme disease. Then he was treated for Lyme disease. But when he failed the treatment, because he was by that point so sick, again the statement was, well if you fail this short course of treatment, again, it can't be Lyme disease. And we were told by people it never really was Lyme disease, even though he tested positive.

WEINTRAUB

11:36:57
But what -- that was a long time ago but what I'm finding amazing is that people are going through this very experience today all the time, even...

SESNO

11:37:07
Still getting denied. Still finding it difficult to get a diagnosis.

WEINTRAUB

11:37:09
...even at ground zero in Westchester County, N.Y. it happens. And it happens a lot. And I think that it has to do with this constant confusion and controversy swirling around the disease.

SESNO

11:37:24
Okay. We'll continue our conversation and take more of your calls and your emails about Lyme disease, what we know about it and what we don't after a very short break. You're listening to "The Diane Rehm Show. I'm Frank Sesno. We'll be right back.

SESNO

11:39:58
Welcome back to "The Diane Rehm Show." I'm Frank Sesno, sitting in for Diane today. Our topic Lyme disease and its spread across the country and the difficulty in diagnosing and treating it. Our panelists include Dr. John Aucott, he's clinical researcher, founder and president of Lyme Disease Research Foundation, Monica Embers, Tulane National Primate Research Center, and Pamela Weintraub, senior editor at Discover Magazine.

SESNO

11:40:19
I want to go to some of the emails that we've gotten from our many listeners on this topic now, folks, and ask you to respond to this. Dr. Aucott, I think this first one is for you. Eastern Ohio, Tom writes, "Where I live has been getting many more deer ticks than before. I've pulled many off of me and noticed these spots itch intensely and take a month or more to heal. Why?" Also he says, "I've been dealing with arthritis for long before I ever got a tick bite. Are blood tests an accurate measure of Lyme disease presence?"

AUCOTT

11:40:48
So he points out that tick bites themselves can often cause itchy bumps that last a long time. That's more an allergic reaction to the tick proteins or tick spit and is different than Lyme disease. Lyme disease, again, is symptoms, fever, chills, a big rash in many cases -- not all. But he's describing more of a reaction to tick bites.

SESNO

11:41:10
Here's another one. "My husband," this writer writes, "has been exposed to Lyme disease for many years through his work outdoors in Delaware. And developed Crohn's disease at 45, has had countless tick bites. Is there a connection through a suppressed immune system?"

AUCOTT

11:41:26
Well, that's exactly what we're investigating with our collaborators at Johns Hopkins. Again, Dr. Soloski is looking into these immune mechanisms and signatures of inflammatory response. That may be one of the keys to understanding this post-treatment Lyme syndrome. It's what's going on with an overactive immune system. Remember, your immune system can cause damage and what he's getting out there is there could be, you know, immune-related damage related to prior Lyme disease.

SESNO

11:41:52
Pamela Weintraub, Monica Embers, you want to comment on either of these questions?

EMBERS

11:41:58
I think what Dr. Aucott pointed out is key. Lyme disease is an immune-mediated disease. So a lot of the manifestations of disease are a result of the immune system reacting to the bacteria. Not the bacteria itself causing specific problems. So we have to determine whether or not the bacteria or remnants of the bacteria remain after antibiotic treatment, in order to determine if a patient is cured, clinically or biologically cured.

SESNO

11:42:32
Now, let me -- just while we are on this. Monica, a lot of your work is on animals. And on the…

EMBERS

11:42:38
Correct.

SESNO

11:42:38
…effectiveness of antibiotic treatment and whether they are cured. What are you finding?

EMBERS

11:42:46
Well, we published a study a few years ago, showing that when we treated monkeys with antibiotics, after they had a disseminated Lyme disease infection, that we were able to find the spirochetes in ticks that we fed upon them. It's a technique called xenodiagnoses, which essentially proved that the bacteria can still be there after antibiotic treatment. But the caveat in the question remains, can those bacteria continue to cause disease? And that's something that has yet to be answered.

SESNO

11:43:21
So let me make sure I understand this. The animal is infected with Lyme disease, gets an antibiotic treatment, presumably the symptoms in the course of that antibiotic treatment wrap up, but the disease, the bacteria remains, is that right?

EMBERS

11:43:35
Correct.

SESNO

11:43:36
I've gotten that? I can…

EMBERS

11:43:37
And for some patients…

SESNO

11:43:39
…go to the head of your class, maybe.

EMBERS

11:43:41
Yes.

SESNO

11:43:42
All right. Let me go to another email here. This one's from Bob. When I was a teenager I had a Lyme vaccine. It was a series of three shots. I know it was soon discontinued. Was it ineffective, do I have any protection after that series of shots or not at all?" Doctor, what about the vaccine?

AUCOTT

11:44:00
So there was a vaccine. And it was going to be effective, but it was going to require boosters. So when it was discontinued, the boosters aren't available, the person should not consider themselves protected anymore.

SESNO

11:44:14
Pamela, what about this vaccine? Is this something that leads you to believe there can or should be more?

WEINTRAUB

11:44:22
Well, if there could be a vaccine developed for Lyme disease that would have a few adverse reactions, that would be great. But keep in mind, that the tick has within it, not only Lyme disease, but all of these other infections, including another spirochetal disease. It would be great if scientists could develop a vaccine against the tick itself. And I know that some people have been working on that. Then it would cover everything.

SESNO

11:44:50
So I have a question for you folks. And, Monica, maybe you're the one to do it. So I have a dog, okay, and I put this stuff on his neck that's supposed to keep fleas and ticks off of him. But I walk next to him, I don't put anything on my neck. I get the ticks. Somehow that doesn't seem fair. Is there nothing I can do?

EMBERS

11:45:07
Well, I wouldn't recommend that you use topical flea treatment -- flea and tick treatment on yourself.

SESNO

11:45:12
I have no intention of doing so, but the thought does cross my mind.

EMBERS

11:45:17
And let me preference this by saying I'm neither a clinician nor a veterinarian. So yeah, those kind of preventatives are very helpful for pets, but I don't know that they have any kind of FDA approval for human use.

SESNO

11:45:31
Let's go back to the phones. Nicky is calling us from New York City. Hi, Nicky.

NICKY

11:45:37
Hello.

SESNO

11:45:37
Hi, there. Go ahead with your question.

NICKY

11:45:39
I thank you so much. I am absolutely furious at the way Lyme patients and the way I have been treated in the medical community, being dismissed, being blown-off. I had to go to 17 doctors to finally get a diagnosis and by then the live and the other co-infections had entered my brain. And, you know, I would wake up paralyzed. I have terrible, terrible cognitive difficulties, even to do this day. I did 21 months of antibiotics and I do think the Lyme is gone, but now I have all this post-Lyme stuff. And thank God…

SESNO

11:46:11
And what's your -- what's the post-Lyme stuff?

NICKY

11:46:14
The post-Lyme stuff in my immune system is too active. So now I have a clotting disorder. I have fibromyalgia. I have a connective tissue disease. And I didn't have any of this stuff before. And I am hopeful that maybe I can get rid of it, but what you have to do to get rid of the Lyme disease is so hardcore and there's so much involved that the medical community is unprepared to help us.

SESNO

11:46:38
Why did it take 17 doctors? I mean what were you saying to them and what were they saying to you?

NICKY

11:46:43
I was telling them all of my symptoms and they were saying, you know, whatever clinician I went to they would say I had whatever was in their specialty. So if I went to a neurologist they would say, well, you have complicated migraine. Or if I went to, you know, whoever else, they would say well, you have this. So it was 17 misdiagnoses before I finally got to a doctor that only treats Lyme patients. And he knew what to do.

SESNO

11:47:02
And who long did the all -- how long did all that take you?

NICKY

11:47:06
That took nine months…

SESNO

11:47:07
Nine months.

NICKY

11:47:07
…of immeasurable pain.

SESNO

11:47:09
So nine months, 17 doctors.

NICKY

11:47:11
Immeasurable pain, not being able to get out of bed, not being able to have a conversation, not -- walking out of my house and not knowing where I was.

SESNO

11:47:17
Okay. John Aucott -- Dr. Aucott, how common is this and how outrageous is this?

AUCOTT

11:47:23
You know, I agree with the caller. I really do. And I understand what she's been through because I see it all the time. And what it really cries out for is a more comprehensive, integrative approach to understanding and listening to patients about their illness. Just because we don't know everything doesn't mean we can't listen and understand our patients and work with them to get better.

SESNO

11:47:44
Pamela Weintraub, you talk to these patients all the time. How common is that experience?

WEINTRAUB

11:47:48
Well, I feel that experience is extremely common. I find that patients are -- who live right at ground zero can be diagnosed with all kinds of weird mitochondrial diseases and autoimmune diseases. I've interviewed, in the past few months, about five people who were treated with steroids for autoimmune diseases that they didn't have when they really had Lyme disease. And they got so sick as a result, because steroid suppressed the immune system. It's outrageous. And it's a common experience.

SESNO

11:48:20
Doctor, I want to know what a patient like this should do.

AUCOTT

11:48:23
You know, it starts with finding a trusted physician that they can -- will listen to them, and that they can work with. Because, you know, unfortunately, there isn't an FDA approved cookbook treatment for post-treatment Lyme syndrome. So it really comes down to finding a physician that you can trust, that has experience, and that will work with you in an individualized way to help you get better.

SESNO

11:48:45
Let's go to Deloris, in Tampa, Fla. Hi, Deloris, go ahead.

DELORIS

11:48:49
Hi. First of all, I want to thank you so much for running this program. We are, as Pam mentioned, we are all suffering worldwide with this. And I just want to mention a few things. The first thing is that my daughter had a positive ELISA and a positive Western Blot. And she showed up at -- this was at Quest. And she -- we had to leave the state to be considered positive. And she was very ill with 104-degree fever.

DELORIS

11:49:13
The other thing is the whole crux of the matter is Borrelia, an intracellular versus extracellular pathogen. If it's an intracellular pathogen, it's probably behaving like the Rickettsia, Coxiella burnetii, Brucella, and a whole host of other pathogens that can remain chronic because what they do is they have an endotoxin which knocks out the (word?) receptors, which brings down the immune system.

DELORIS

11:49:38
So we have a -- and then we are -- we look like AIDS patients and we show up with all the opportunistic infections of AIDS patients, with the GI pathogens and a lot of other things. There -- in Florida, I run a support group for people with Lyme disease in Florida…

SESNO

11:49:53
Um-hum.

DELORIS

11:49:53
…and we are a mobile population. We travel everywhere.

SESNO

11:49:56
Sure.

DELORIS

11:49:57
For instance, I think my daughter was probably bitten a number of times before she became very ill. And…

SESNO

11:50:00
And bitten where, in Florida?

DELORIS

11:50:04
In -- well, no. We don't even know.

SESNO

11:50:04
Or when you were traveling?

DELORIS

11:50:06
Most of the people -- we were in Italy and Sweden and Florida and New Jersey all in the same summer and she became deathly ill, could not finish -- top student in the IB program, couldn't finish high school, got the run around from many physicians down here who really didn't even know that Lyme disease is here in Florida. If you go to the Florida State Board of Health website -- so this can answer Paul Mean, because he words for the CDC.

DELORIS

11:50:30
If you go to the Florida Department of Health website and even talk to the CDC officer in Florida, who's James Mathias, he'll tell you to see -- watch under our skin and get an ILADS doctor. And our State Board of Health website, we have that Florida is endemic for Lyme disease. We have an epidemiologist, Dr. Kerry Clark, who has proven that Lyme is in the state of Florida.

DELORIS

11:50:54
We have people that are bitten and they get the Borrelia.

SESNO

11:50:55
All right. Let me just cut you off, yeah, because I want to bring the panel in on this. And, Monica, let me let you start with this because there's a lot we just heard, both in terms of how this expresses itself and where.

EMBERS

11:51:07
Yes. I'm going to focus on the question about Borrelia being intracellular. And…

SESNO

11:51:13
And could you explain that please, in English, for people who aren't on top of all of this?

EMBERS

11:51:18
So there are some bacteria that live very well inside of human cells, but those bacteria are typically very small or quite a bit smaller than Borrelia burgdorferi. And we don't have any good strong evidence that Borrelia can live inside of human cells from actually looking at the cells inside of a human host or an animal host. So I think it's highly unlikely that they actually do live inside cells, but we do know that they can hide out in sort of what we call immunoprivileged sites, or places where the immune system doesn't reach very well, such as collagenous tissues and the joints and so forth.

EMBERS

11:52:06
So it's certainly possible for them to hide from the immune system.

SESNO

11:52:11
Let me move in the next few minutes, folks, that we've got left here, to the issue of avoidance or prevention or protection. Here's an email from Bill, who writes, "I spend a great deal of time outdoors. I'd appreciate it if the panel could address effective ways to avoid being bitten by ticks. And how early in the year we should be careful."

AUCOTT

11:52:30
It's time to start being careful in May. As soon as the temperature gets above 40 degrees ticks will be out. Preventing Lyme disease is like, you know, wearing a seatbelt. Do things that are appropriate. You can wear DEET to prevent or decrease ticks. Even more important may be treating your clothes. There are compounds like permethrin that if you treat your clothes, will keep ticks off of you. So I would look into clothing treatment, as well.

AUCOTT

11:52:57
And then, avoiding unnecessary risks, you know. When you go outdoors, enjoy it, but stay out of the brush, stay out of the grass, stay on your paths when you're hiking. And where long pants that are treated with permethrin. Do tick checks.

SESNO

11:53:09
And when you say treat your clothes…

AUCOTT

11:53:12
Yeah.

SESNO

11:53:12
…what does that involve, what does that mean?

AUCOTT

11:53:14
You go to the sporting goods store, buy a bottle of permethrin. You don't spray it on your skin, you spray it on your clothes. It dries into the material. And this is actually what the military uses to prevent ticks.

SESNO

11:53:24
Pamela, what do you tell your people who you're in touch with on Facebook and what do they tell you about prevention?

WEINTRAUB

11:53:30
Well, to tell you the truth, I've moved to Brooklyn. So I don't even have much tick exposure anymore. And I tell people to be very, very careful. And to check themselves for tick. And I make the point that the ticks that spread Lyme disease, the nymphal ticks, are the size of the head of a pin. And you -- and they look like freckles.

SESNO

11:53:51
Yeah.

WEINTRAUB

11:53:52
You can barely see them. And you can't feel them.

SESNO

11:53:54
Yes.

WEINTRAUB

11:53:56
And they can hide in your hair.

SESNO

11:53:57
And we can't all move to Brooklyn, though. I'm Frank Sesno. And you're listening to "The Diane Rehm Show." And, again, talking about Lyme disease, in our few minutes remaining, on prevention. Monica, anything that your research suggests or your experience suggests that can address this issue, because I think it's something that everybody is going to worry about. How do I avoid this?

EMBERS

11:54:19
We don't actually research that specifically, but…

SESNO

11:54:22
That's what I was afraid of.

EMBERS

11:54:23
…I think it's important to know that ticks really like moist leaf litter. So they don't jump, contrary to popular belief, they don't jump. But if you brush up against grass or leaves that have ticks, then you can become a meal for that tick. So as much as you can do tick checks, as well, I think is very important.

SESNO

11:54:48
Okay. We have time for one last call. Mark, joins us from Jasper. Mark, go ahead, very quickly if you could.

MARK

11:54:54
Yes. Real quick, I had probably a seed tick on my back for about four or five days. And I had somebody look at it and they couldn't tell what it was. And I had an appointment with the doctor. And I said, "What's this?" And he said, "Oh, my God, it's a tick." And it was real small. And he pulled it out and he put me on doxycycline. But since then I will have these episodes where it'll itch in that same spot, and it'll swell up about the size of two nickels under my skin. And it'll last probably 8 to 12 hours before the swelling goes away.

MARK

11:55:30
I also have hereditary angioedema and that's the only distinction my doctor can draw, you know…

SESNO

11:55:36
All right. Let me…

MARK

11:55:38
…to connect the dots.

SESNO

11:55:39
Let me -- well, let's see if Dr. Aucott can connect the dots for you.

AUCOTT

11:55:42
I mean, it sounds like an allergic reaction to the tick bite itself. If the person is not ill, otherwise, in other words not having those symptoms we talked about of post-treatment Lyme syndrome, I would suspect it's an allergic reaction to the tick bite, which can last months.

SESNO

11:55:57
Monica, in your work with animals, do we develop a resistance to tick bites?

EMBERS

11:56:03
Actually, that's a great question. Some animal models do. For example, guinea pigs develop anti-tick immunity, but humans and monkeys develop a small amount of anti-tick immunity, but not enough to prevent transmission of Lyme disease from multiple tick bites.

SESNO

11:56:23
Dr. Aucott, you work around ticks all the time, presumably. Have you been bitten by them?

AUCOTT

11:56:26
Oh, yeah, and I'm an avid hiker and I take precautions, but, yes.

SESNO

11:56:30
And do you react to them?

AUCOTT

11:56:33
No, I don't.

SESNO

11:56:34
Do you worry about getting Lyme disease from your work?

AUCOTT

11:56:37
Well, not from my work, because it's in an office. But, you know, I'm a hiker and I have a dog and -- so I take precautions. It's like wearing a seatbelt when I drive a car. I take precautions.

SESNO

11:56:45
Every time you go out?

AUCOTT

11:56:47
Every time. I wear long pants even if it's 95 degrees.

SESNO

11:56:49
And you do a tick inspection every time?

AUCOTT

11:56:50
Every time and my clothing is treated with permethrin. And I stay on the paths when I hike.

SESNO

11:56:55
Well, that's probably safer -- I'm sure is, but it takes a little of the spontaneity out of life. I want to thank our panelists, Dr. John Aucott, Monica Embers, Pamela Weintraub for talking about this very difficult and disturbing thing we all Lyme disease. For those of you who called in, for those of you who are having difficulty treatment, good luck to you. Stay on it. And we wish our researchers all the best in unlocking this mystery. I'm Frank Sesno. You're listening to "The Diane Rehm Show."
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