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Each year an estimated 300,000 Americans are diagnosed with Lyme disease, and many say this number is likely to be low because not all cases are reported. Those cases that are reported are concentrated in the Mid-Atlantic states into New England and in the Upper Midwest. The disease is associated with a number of debilitating symptoms including fever, joint pain and headaches. Antibiotics can usually be effective an treatment but not always. Guest host Frank Sesno and panelists discuss the challenges of diagnosing and treating Lyme disease.
MR. FRANK SESNOAnd 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 SESNOSo 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 SESNOBut, 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 MEADGood morning. Nice to be with you.
SESNOGood 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?
MEADWell, 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.
MEADNow, 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.
SESNO30,000 over four years, or per year for four years?
MEADPer 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.
MEADBut 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.
MEADAnd 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.
SESNOJust because people don't always come forward or we don't accurately diagnose them.
MEADRight--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.
SESNODr. 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?
MEADWell, 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.
SESNOAnd commonly delivered to us courtesy of a tick.
MEADThat 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.
SESNOSo what areas of the country is this most frequent?
MEADYeah, 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.
SESNONow 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?
MEADYeah. 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.
MEADWhereas, 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.
SESNOWhy? Why is that?
MEADWell, 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.
SESNOWhat other disease, in addition to Lyme disease, are ticks or black-legged ticks known to carry?
MEADWell, 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.
MEADBut 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.
SESNOWould you just talk about ticks for a minute, which may be one of God's most disgusting creatures, I'm sorry to say.
MEADOh, how could you say that?
SESNOAh, 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?
MEADWell, 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.
MEADAnd all of this basically brings more people into contact with more infected ticks. And that helps drive the disease up.
SESNODr. Paul Mead, chief of epidemiology and surveillance for the CDC's Lyme disease program. Thank you very much for your time this morning.
MEADMy pleasure. Thank you.
SESNOAppreciate 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 EMBERSThat's correct. Very good.
SESNOAnd 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 AUCOTTIt 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.
SESNOTalk about the difficulty in diagnosing Lyme disease.
AUCOTTSo 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.
SESNOSo 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?
AUCOTTSo 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.
SESNOMonica, what's the research you're doing on this?
EMBERSA 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...
SESNOSymptoms like joint pain and what else?
EMBERSThey're typically very subjective symptoms...
EMBERS...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.
SESNOAnd how widespread is this kind of thing, where people complain of symptoms long after they've been treated?
EMBERSWell, 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.
SESNOWe 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."
SESNOWelcome 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 WEINTRAUBWell, 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 WEINTRAUBThere 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...
SESNOSo the -- let me just stop you for a minute. So the controversy is whether or not you actually have Lyme disease or...
WEINTRAUBThere 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...
SESNOAnd 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?
WEINTRAUBThe 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.
WEINTRAUBAnd, as you can see, if you're talking to -- from Dr. Aucott's research, a lot of patients fail that treatment.
SESNODr. 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?
AUCOTTYeah, 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.
SESNOWhy? Why? Why?
AUCOTTWell, 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.
SESNOMonica Embers, do you want to join in?
EMBERSYes. 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.
EMBERSBut it's very difficult.
SESNO...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?
WEINTRAUBWell, 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.
WEINTRAUBAnd 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...
SESNODr. 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?
AUCOTTYour 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...
SESNOSo we can -- it's not just aches and pains. It becomes arthritis?
AUCOTTIf you don't get treated initially, more than half the people get arthritis.
SESNOAnd what else? What about this exhaustion that you hear from people who suffer from it? What about disorientation some people report?
AUCOTTThey 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.
SESNOAnd Monica, with treatment, what are some of the things that people will complain about down the road?
EMBERSWith 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.
SESNOWhen you say cognitive problems, what do you mean?
EMBERSThey're fairly nonspecific. Everybody experiences it differently. Difficulty thinking, stuttering, you know, just inability to focus or concentrate and...
SESNOSo Dr. Aucott, what then is the recommended treatment and is it long term antibiotics? Are there -- there are risks to that too.
AUCOTTSo 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.
SESNOPamela, how would you characterize the quality of care for people with Lyme disease in this country?
WEINTRAUBWell, 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.
WEINTRAUBI 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...
SESNOWhy, is this not covered by health insurance?
WEINTRAUBWell, 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...
AUCOTTYeah, 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.
SESNOMonica, 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?
EMBERSThere are other diseases coming from the black-legged ticks?
EMBERSYeah, 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...
SESNOSo do you test for these diseases as well, Dr. Aucott?
AUCOTTIn 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.
SESNOSo 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 firstname.lastname@example.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?
AUCOTTAbsolutely. Absolutely. There -- these are common diseases now along the east coast of the United States.
SESNOIt didn't used to be?
AUCOTTDidn't used to be. I mean, this disease emerged when I was a medical student in the 1970s. Before then it was unheard of.
SESNOAnd what about in other parts of the country that have not commonly had ticks or had tick-related diseases?
AUCOTTThey 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...
SESNOHad Lyme disease?
AUCOTTYeah, it's been around for thousands of years.
SESNOI'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 email@example.com. 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.
EMBERSI 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.
WEINTRAUBWell, 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.
WEINTRAUBOut 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.
SESNOSo more ticks carrying more disease in more places. Let's go to the phones now and Allison joins us from Dallas, Texas. Hi, Allison.
ALLISONYes, 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.
ALLISONIf 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.
SESNOYeah, great question. Dr. Aucott.
AUCOTTSo 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.
WEINTRAUBWell, 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.
WEINTRAUBYet we went from doctor to doctor who said his illness couldn't be Lyme disease. And what shocks me when I talk to people...
SESNOSo they actually said his illness couldn't be Lyme...
WEINTRAUBWell, 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.
WEINTRAUBBut 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...
SESNOStill getting denied. Still finding it difficult to get a diagnosis.
WEINTRAUB...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.
SESNOOkay. 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.
SESNOWelcome 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.
SESNOI 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?"
AUCOTTSo 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.
SESNOHere'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?"
AUCOTTWell, 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.
SESNOPamela Weintraub, Monica Embers, you want to comment on either of these questions?
EMBERSI 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.
SESNONow, let me -- just while we are on this. Monica, a lot of your work is on animals. And on the…
SESNO…effectiveness of antibiotic treatment and whether they are cured. What are you finding?
EMBERSWell, 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.
SESNOSo 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?
SESNOI've gotten that? I can…
EMBERSAnd for some patients…
SESNO…go to the head of your class, maybe.
SESNOAll 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?
AUCOTTSo 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.
SESNOPamela, what about this vaccine? Is this something that leads you to believe there can or should be more?
WEINTRAUBWell, 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.
SESNOSo 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?
EMBERSWell, I wouldn't recommend that you use topical flea treatment -- flea and tick treatment on yourself.
SESNOI have no intention of doing so, but the thought does cross my mind.
EMBERSAnd 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.
SESNOLet's go back to the phones. Nicky is calling us from New York City. Hi, Nicky.
SESNOHi, there. Go ahead with your question.
NICKYI 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…
SESNOAnd what's your -- what's the post-Lyme stuff?
NICKYThe 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.
SESNOWhy did it take 17 doctors? I mean what were you saying to them and what were they saying to you?
NICKYI 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.
SESNOAnd who long did the all -- how long did all that take you?
NICKYThat took nine months…
NICKY…of immeasurable pain.
SESNOSo nine months, 17 doctors.
NICKYImmeasurable 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.
SESNOOkay. John Aucott -- Dr. Aucott, how common is this and how outrageous is this?
AUCOTTYou 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.
SESNOPamela Weintraub, you talk to these patients all the time. How common is that experience?
WEINTRAUBWell, 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.
SESNODoctor, I want to know what a patient like this should do.
AUCOTTYou 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.
SESNOLet's go to Deloris, in Tampa, Fla. Hi, Deloris, go ahead.
DELORISHi. 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.
DELORISThe 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.
DELORISSo 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…
DELORIS…and we are a mobile population. We travel everywhere.
DELORISFor instance, I think my daughter was probably bitten a number of times before she became very ill. And…
SESNOAnd bitten where, in Florida?
DELORISIn -- well, no. We don't even know.
SESNOOr when you were traveling?
DELORISMost 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.
DELORISIf 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.
DELORISWe have people that are bitten and they get the Borrelia.
SESNOAll 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.
EMBERSYes. I'm going to focus on the question about Borrelia being intracellular. And…
SESNOAnd could you explain that please, in English, for people who aren't on top of all of this?
EMBERSSo 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.
EMBERSSo it's certainly possible for them to hide from the immune system.
SESNOLet 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."
AUCOTTIt'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.
AUCOTTAnd 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.
SESNOAnd when you say treat your clothes…
SESNO…what does that involve, what does that mean?
AUCOTTYou 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.
SESNOPamela, what do you tell your people who you're in touch with on Facebook and what do they tell you about prevention?
WEINTRAUBWell, 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.
WEINTRAUBYou can barely see them. And you can't feel them.
WEINTRAUBAnd they can hide in your hair.
SESNOAnd 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?
EMBERSWe don't actually research that specifically, but…
SESNOThat's what I was afraid of.
EMBERS…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.
SESNOOkay. We have time for one last call. Mark, joins us from Jasper. Mark, go ahead, very quickly if you could.
MARKYes. 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.
MARKI also have hereditary angioedema and that's the only distinction my doctor can draw, you know…
SESNOAll right. Let me…
MARK…to connect the dots.
SESNOLet me -- well, let's see if Dr. Aucott can connect the dots for you.
AUCOTTI 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.
SESNOMonica, in your work with animals, do we develop a resistance to tick bites?
EMBERSActually, 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.
SESNODr. Aucott, you work around ticks all the time, presumably. Have you been bitten by them?
AUCOTTOh, yeah, and I'm an avid hiker and I take precautions, but, yes.
SESNOAnd do you react to them?
AUCOTTNo, I don't.
SESNODo you worry about getting Lyme disease from your work?
AUCOTTWell, 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.
SESNOEvery time you go out?
AUCOTTEvery time. I wear long pants even if it's 95 degrees.
SESNOAnd you do a tick inspection every time?
AUCOTTEvery time and my clothing is treated with permethrin. And I stay on the paths when I hike.
SESNOWell, 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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