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The CDC estimates there are about 30.000 cases of Lyme disease in the U.S. These figures don’t include many who believe they have Lyme disease even though signs of infection don’t show up on lab tests. In addition, among many with evidence of exposure, there’s no proof that the bacteria associated with Lyme disease is actually the cause of their health problems – especially when these problems have been long term. Among doctors debate has been vicious. Some say chronic Lyme is real and is major health issue. Others argue these claims are not supported by the research. Careers have been ruined. Contradictory and misinformation is everywhere, and patients, many with truly debilitating conditions, are left in the lurch. Join us to talk about challenges in diagnosing and treating Lyme disease.
- Dr Paul Auwaerter Associate professor of medicine, Johns Hopkins University School of Medicine and clinical director, division of infectious diseases. Johns Hopkins Hospital
- Dr. Samuel Shor Internist, private practice and associate clinical professor at George Washington University.
- Dr. Brian Fallon Professor of clinical psychiatry. director, Lyme and Tick-Borne Diseases Research Center. and director, Center for the Study of Neuroinflammatory Disorders & Biobehavioral Medicine Columbia University
- Stephen Barthold Professor,department of pathology, microbiology and immunology Center of Comparative Medicine at the School of Veterinary Medicine, University of California, Davis
Questions as to whether chronic Lyme disease exists, how to test for it, and how to treat it are dividing doctors and confounding patients. Diane’s guests discuss why diagnosing and treating the disease remains so challenging and controversial.
Best Treatment Practices
Doses of specific antibiotics are recommended for both early-stage Lyme disease and for patients who may be experiencing some neurological problems or arthritis, like knee swelling, Dr. Auwaerter said. But as for the question about whether or not it’s possible to have so-called “chronic” Lyme disease, Auwaerter said that carefully performed studies have shown no evidence that bacteria seems to persist in people with ongoing complaints after being treated for Lyme disease.
A Different View On Chronic Lyme Disease
Dr. Shor believes that there’s “no scientific basis” for concluding that 30 days of treatment in all patients with Lyme disease is going to be adequate to cure the disease. Dr. Barthold has found in his veterinary practice and research that the bacteria that causes Lyme disease is very
good at persisting in an animal’s body for that animal’s entire lifespan. It’s possible, Dr. Barthold said, that this could be the same pattern for the disease in humans.
What Happens With “Chronic” Lyme Disease?
“The infection is persistent, the disease is not,” Dr. Barthold said. “And what’s curious about Lyme disease is in the early phase of the infection you have arthritis and inflammation of the heart and other manifestations in animals as you see in humans. And then the immune response, particularly antibody, comes in and clears a large number of the bacteria from tissues leaving behind persisting organisms that are sequestered away in connective tissue,” he said.
Difficulties In Diagnosis And Treatment
Dr. Fallon said that it’s certainly possible for some patients to have Lyme disease but to not test positive for it. Dr. Shor agrees that the available testing is “insensitive.” “And we have managed care which pushes physicians to see very complex patients in short periods of time and insurance companies that are loathe to pay any more than they have to,” Dr. Shor said.
You can read the full transcript here.
MS. DIANE REHMThanks for joining us, I'm Diane Rehm. Questions as to whether chronic Lyme disease exists, how to test for it, how to treat it are dividing doctors and confounding patients. Joining me to talk about why diagnosing and treating this disease remains so challenging and so controversial, Dr. Samuel Shor. He's an internist in private practice, associate clinical professor at George Washington University.
MS. DIANE REHMJoining us by phone from New York, Dr. Brian Fallon. He's professor of clinical psychiatry, director of the Lyme and Tick-Borne Diseases Research Center at Columbia University. And from a studio at the University of California, Davis, Stephen Barthold, professor at the Center for Comparative Medicine at the School of Veterinary Medicine. Do join us 800-433-8850, send your email to email@example.com, join us on Facebook or Twitter. Good morning to all of you.
DR. SAMUEL SHORGood morning.
REHMGood morning to all of you. I hope you can hear me.
DR. BRIAN FALLONWe certainly can.
REHMGood. First, joining us by phone from Baltimore, Md., is Dr. Paul Auwaerter. He's associate professor of medicine at Johns Hopkins University School of Medicine. Good morning to you, sir.
DR. PAUL AUWAERTERGood morning, Diane, and thank you for having me.
REHMMy pleasure. Talk about how big a problem you see Lyme disease to be?
AUWAERTERWell, Diane, Lyme disease caused by the bacteria Borrelia burgdorferi is transmitted by ticks here in the United States. Most commonly in the northeast and also the upper mid-west. Over the recent years, there is indeed been increased numbers of cases north of 20,000 and even approaching 30,000 a year. Although there's little doubt that there are more cases that perhaps doctors don’t report.
REHMAnd what's considered...
AUWAERTERSo it is something that I think is increasing...
REHM...best practices for treating Lyme disease, how quickly?
AUWAERTERI'm sorry, I didn't catch that, Diane.
AUWAERTERWhat is considered to be best practices for treating Lyme disease?
AUWAERTERYeah, the Infectious Disease Society of America, a group of almost 9,000 physicians have issued guidelines based on sound of scientific principles for treatment of this. And for people that have so-called early Lyme disease, meaning the characteristic bulls-eye rash for example, often respond to two weeks of antibiotics such as doxycycline or amoxicillin. People that may have Lyme disease that's not detected in early stages but developed neurological problems or arthritis such as knee swelling may need four weeks of antibiotics, which helps the majority of people. And this (unintelligible) ...
REHMIs it possible, from your perspective, to have chronic Lyme disease?
AUWAERTERWell, chronic Lyme disease is used by some doctors with the notion that the bacterial agent of Lyme disease persists despite antibiotic treatment courses and causes people to have complaints such as fatigue, muscle aches and pains. From very carefully performed studies, we have found no evidence that the bacteria seems to persist in people with these complaints after Lyme disease.
AUWAERTERSo we're not in favor of chronic Lyme disease as that term. It's clear that some patients have what we call, post-treatment Lyme disease syndrome, meaning the bacteria appears to be gone but yet they haven't fully recuperated and may still have problems. That seems to effect a small percentage of people after they recuperate, after the first few months of their infection.
REHMAre you concerned that Lyme disease, as a diagnosis, may be overdone?
AUWAERTERIn my experience, Diane, and also many others, I see many patients that come into my office with a diagnosis of Lyme disease for often perplexing symptoms that really are not well explained. And I do think there's a tendency to over diagnose Lyme disease for patients that have problems that aren't well understood by modern medicine such as chronic fatigue, brain fog, musculoskeletal complaints. And I do see those people but this is a holy grail. We don't quite understand why this afflicts people here, not only in the United States but elsewhere. Clearly, it needs to be better understood. But only a tiny percentage of the people seen really have problems after authentic Lyme disease.
REHMBut how much debate is going on regarding diagnosis and testing and treatment of Lyme disease?
AUWAERTERWell, I think the debate is what you make of it. For example, a recent survey of physicians in Connecticut found that only approximately two percent of physicians there used the term chronic Lyme disease. And in fact, it means that most people follow the standard diagnostics for Lyme disease, either looking for a characteristic rash or using the so-called blood test for Lyme disease, serology test. That really now perform very well in terms of diagnosing Lyme disease.
AUWAERTERSome alternative practitioners use laboratories and unvalidated (sic) methods to make their diagnosis of chronic Lyme disease. But they really haven't held up to science and I think most physicians like to see good evidence of either diagnosis or effective treatment. We've, you know, of course don't want to withhold anything that's effective for our patients.
REHMDr. Paul Auwaerter, he's at the Johns Hopkins University School of Medicine. Thank you so much for joining us.
AUWAERTERYou're welcome, Diane, thank you.
REHMAnd turning to you now, Dr. Samuel Shor. You're one of the doctors on the other side of this debate. What are your views?
SHORWell, thank you firstly for having me here, Diane. And I am very concerned about some of the comments Dr. Auwaerter made. I was a member of the 2011 Virginia Governors taskforce on Lyme disease. And, in fact, I interviewed Dr. Auwaerter as he provided testimony to us. And we came out with several statements in our physicians profile in June that -- one of which is that the diagnostic paradigm that's recommend by the IDSA is flawed and insensitive. And that in fact, there is no scientific basis for concluding that 30 days of treatment in all patients with Lyme disease is going to be adequate. So I think he's making some fairly strong statements that, in fact, are flawed.
REHMWhy do you -- or do you believe that treatment for Lyme disease has to go on much longer?
SHORWell, in selected cases and in fact I published original research in Peer Review, last year, that identified that the majority of my patients who otherwise would've been diagnosed with chronic fatigue syndrome, that included negative blood tests for Lyme disease, actually responded to antibiotics and often prolonged antibiotics, very often more than six to 12 months, directed and carefully monitored but in fact the majority of my patients responded with antibiotics in that setting as a major part of their treatment protocol.
REHMSo to what extent is your research going along with that of others or is it outside the mainstream?
SHORWell, unfortunately, the idea say which is a very well respected organization has promoted these guidelines that this one set of guidelines of this larger organization by many are felt to be flawed. But the majority of medical practitioners are still adhering to those guidelines. And we, in the alternative approach if you will, to managing this condition are trying to educate people to that effect.
REHMAnd turning to you Dr. Stephen Barthold. Talk about the research that's currently going on, on Lyme disease and the questions that have been answered.
MR. STEPHEN BARTHOLDWell, sure. It's a pleasure being here and representing the research side of things. First of all, I want to say that I'm a Veterinarian and I don't give medical advice.
REHMI understand that fully.
BARTHOLDOkay. Unless your nose is dry and your tail is not wagging, I can't help you.
REHMAll right. I'll consult my...
REHM...own dog at home on that one.
BARTHOLDOkay. We've been working with looking at Lyme disease for well over 25 years in my laboratory. And what I am most interested in is the biology of this organism in the immune competent host and we use a mouse model for the most part to do that. And what comes across very clearly is that this bacteria is very good at persisting for the, literally, the lifespan of the animal. And we see this persistence in otherwise immune responsive hosts, in mice and rats and hamsters and guinea pigs and gerbils and dogs and monkey's.
BARTHOLDAnd I presume something similar may be occurring in some people. And there's some individual clinical reports that suggest that. So this is a bacteria that is a professional persist-er. And therein lies problem because antibiotics will kill off most bacteria and that's generally what antibiotics do. And you rely upon the host to clean up the rest of the infection.
BARTHOLDAnd when you have an organism that is good at evading elimination, there is a question there if antibiotics are going to be completely effective in all cases. And what's coming out of research in animals, and I emphasize animals, that persistence after antibiotic treatment is -- has been documented in dogs and mice and monkey's.
REHMAll right. And we'll come back to that after a short break. Stephen Barthold is professor in the Department of Pathology, University of California, Davis.
REHMAnd we are talking in this hour about Lyme disease, whether it is something that's treatable immediately upon discovery, whether it can become a chronic disease. What is going on within the medical profession creating a huge disconnect between those who believe it can be cured immediately or those who believe it can become a chronic disorder.
REHMJust before the break, Stephen Barthold, you were talking about the treatment of animals and you were using mice as your subjects. When you find that Lyme disease persists for the life of the animal or the creature, what happens to that animal with chronic Lyme?
BARTHOLDWell, the infection is persistent, the disease is not. And what's curious about Lyme disease is in the early phase of the infection you have arthritis and inflammation of the heart and other manifestations in animals as you see in humans. And then the immune response, particularly antibody, comes in and clears a large number of the bacteria from tissues leaving behind persisting organisms that are sequestered away in connective tissue.
REHMOkay. I have a follow-up question. You said the infection is persistent, but the disease is not. Clarify that for us.
BARTHOLDWell, when the immune phase of the infection -- we know that the inflammation in joints and hearts disappears and the immune system is clearing the spirochetes of the bacteria from those sites. And yet the remaining organisms are in connective tissue and curiously not eliciting inflammatory change. So in the long term infections, six months, eight months, ten months out into the infection, we see very little inflammation.
BARTHOLDSo herein lies the problem. This bacteria is there,. but it's not eliciting inflammation. But yet you take the bacteria out of that host and put it into another mouse and it causes inflammation all over again.
REHMInteresting. All right. I want now to turn to Dr. Brian Fallon. He's professor of clinical psychiatry at Columbia University. He's also director of the Lyme and Tick-Borne Diseases Research Center. Talk about your research into the possibility of chronic Lyme disease.
FALLONThank you, Diane. I'm happy to do that. Chronic Lyme disease, as others have mentioned on this talk, it's a term that's used really to refer to chronic symptoms people get after having been diagnosed with well-documented Lyme disease. So people have persistent symptoms. We don't really know exactly what the cause of those persistent symptoms might be. We do know, from the animal research and the excellent work that Dr. Barthold and others have done, including Dr. Felipe and the monkey model, that the Borrelia spirochete can certainly persist.
FALLONAnd so the question is are those persisting organisms in some ways causing disease? And if what's true in the mouse and the monkey and the dog model is correct, it's reasonable to postulate at least that the same is happening in humans. So if that's true, then certainly it's reasonable to consider that some patients who have persistent symptoms after being diagnosed with Lyme disease and treated for Lyme disease might in fact need additional courses of antibiotics.
FALLONSo over the years that has been studied by various groups and we were one of the groups that studied that, taking patients with chronic cognitive problems after well-documented Lyme disease. And we treated them with a longer course of IV antibiotic therapy. Others have also done something similar so, for example, there was a study at Stony Brook University where they treated patients with -- who had previously been treated with one month of IV antibiotics. And they were recruiting patients with persistent fatigue. We found modest improvement in cognition that wasn't sustained when they came off of the antibiotics.
FALLONSo one possibility is that the antibiotics really weren't helpful and that's why it wasn't sustained. Or it could be that maybe in some patients you need longer courses...
FALLON...of antibiotics than we gave.
REHMAnd one question there, you're saying that some people could test negative for Lyme disease but that the disease could show up in perhaps the blood.
FALLONSome patients certainly can test negative and have Lyme disease. That's certainly been well documented, yes.
REHMAnd you're also saying that one month on the IV antibiotics can prove insufficient for truly treating the problem.
FALLONThat certainly has been the clinical experience of many physicians when they evaluate patients. So, I mean, for example, if you have a patient who responds very well to one month course of IV ceftriaxone with a remarkable resolution of their symptoms and then four months later the symptoms return, it's a reasonable question to ask whether the infection in some way has returned.
FALLONNow, we know that the Borrelia spirochete can lodge in places where it's hard for the antibiotics to penetrate. We also know that the Borrelia spirochete can go into dormant phases. So is it possible that when they come out of the dormant phase that they initiate a new round of symptoms? So in those cases physicians clinically sometimes choose to retreat. And sometimes those patients benefit. Now of course those are just clinical reports and the best thing -- the best way to really study science is with a good scientific study.
FALLONAnd in many ways, the study I like the best was the one done by Dr. Lauren Krupp at Stony Brook in which she found that those patients who had been previously treated who were given one month of IV ceftriaxone versus IV placebo at six-month follow up, 64 percent of those patients who had been given the IV antibiotic benefitted with significant improvement and fatigue...
FALLON...compared to only 18 percent of those on placebo. So clearly over three times as many patients were benefitting from the repeated antibiotic therapy.
FALLONThere have been negative studies as well however. For example, Dr. Klempner's study in Boston and others showed that in their study of chronic Lyme disease that a course of one month of IV treatments and two months of oral doxy treatments was not helpful in improving functional status. So the studies certainly have not been consistent. And that contributes to the controversy.
REHMAnd that's key. Dr. Shor, what kinds of treatments have been the most successful for those you've treated?
SHORRecognizing that there is a wide variety of presentations, degree of illness, those for whom I feel have a bona fide infection that is ongoing. The majority will respond to oral antibiotics but usually there are several that we have to use in combination. The majority of my patients do not need IV antibiotics but under certain circumstances they do. If, for example, they present very severe meningitis, if they fail adequate treatment on orals, if they don't tolerate orals then I'll go to IV.
REHMDr. Shor, explain to me why this whole subject has become as controversial as it has?
SHORWell, that's a good question and I think it's somewhat of a perfect storm in that you've got a growing tick population in certain endemic areas. And Dr. Auwaerter alluded to the mid centre or the mid east coast up to the northeast and the Midwest area that the tick exposure is increasing, that they're very small ticks. And very often people don't...
REHMHard to see.
SHOR...hard to see like the tip of a pencil, that very often people don't realize they've been infected. And the majority of people probably do not either get a rash that is associated with this or get a rash that's either atypical or in a location they're unaware of. They present with very common symptoms such as chronic fatigue, joint pain, headache. They're very often presenting, on physical exam, don't have any abnormalities. And clinicians have difficulty identifying what exactly is going on.
SHORThe testing available is insensitive. The guidelines are flawed. And we have managed care which pushes physicians to see very complex patients in short periods of time and insurance companies that are loathed to pay anymore than they have to. So it's a perfect storm for the development of this complex...
REHMBut why has this created such a knocking of heads among doctors themselves?
SHORWell, again, you've got one set of guidelines that are highly restrictive, of purest perspective that for whatever reason...
REHM...that says you use antibiotics for a certain period of time, no longer.
SHORCorrect. And I understand from whence they come in relation to the fact you don't want to use antibiotics any longer than you have to, in terms of drug resistance and side effects and the like. The problem is is that you've got to take care of people...
SHOR...at the end of the day at the point of care who are ill in my research that are responding to treatment. When you remove the antibiotic very often they get worse, you reinstitute them and they get better. There's a cause and effect relationship.
REHMDr. Fallon, would you agree that there is this ongoing dissention among doctors, among those who are trying to treat patients. The patient should be cured according to the research currently available. But then they come back and they say, I feel terrible.
FALLONThat's exactly what the scenario is. And there is a lot of dissention among doctors and, you know, I think the doctors are all well intentioned and well meaning and they have different perspectives based on their scientific understanding. But what ends up happening is that some physicians say, well, you have recurrence symptoms and I don't know what to do with you. So I can't really help you. And then the patients go to another doctor who treats them perhaps with an additional course of antibiotics or longer courses and they get better sometimes, not always.
FALLONAnd so then they go back to their original doctor and complain and that creates hostility of one doctor towards another. And, you know, the truth is that this is a multi-factorial problem. So for example, we know that if someone has a bad viral infection that they're going to have post-infectious symptoms that can last like six months, nine months. And they can be quite ill with fatigue and cognitive problems and look a lot like our chronic Lyme patients. So just because someone has persistent symptoms doesn't necessarily mean it's persistent infections.
REHMBut at the same time, Dr. Fallon, you heard Dr. Barthold say that the infection is persistent for the lifetime of the animals.
FALLONThat's exactly right. And, in fact, this recent article that came out by Dr. Embers from Dr. Felipe's group in Tulane showed that in three of the monkeys that had been treated with antibiotics, three of them actually had moderate to severe inflammatory lesions in the heart. And, you know, fluorescent staining for Borrelia at those areas actually confirms that Borrelia fragments were there. So it certainly looks like -- we know that the infection can persist. And at least in that situation in this particular article in the monkey model, inflammation was in fact present at the site of the Borrelia markers.
FALLONSo I'm not saying at all that this is, please understand me, purely a post-infectious problem. I actually strongly believe that a lot of these patients do have persistent infections, some of whom benefit from repeated courses of antibiotic therapy.
REHMAll right. Dr. Brian Fallon at Columbia University and you're listening to "The Diane Rehm Show." Well, let's hear from those themselves who've had Lyme disease. Good morning, Linda in Winston-Salem, N.C. You're on the air.
LINDAGood morning, Diane. Thank you so much for doing this show. I (unintelligible) ...
REHMI'm sorry, Linda, your phone is breaking up on us. Do you have...
LINDACan you hear me now?
REHMJust barely. Try it again.
LINDAOkay, thank you, Diane, for doing this show. I suffered last year from Lyme disease and luckily, I was treated (unintelligible) ...
REHMI'm sorry. I'm afraid we're going to have to let that call go. So sad. We have been having these repeated phone problems. Let's go now to Hudson, Mass. and try again. Good morning, Elizabeth.
ELIZABETHGood morning. I had Lyme meningitis a few years ago and was fortunately treated very early on. And I was treated with a three-week course of oral doxycycline. And, as you can imagine, I'm pretty vigilante about ticks and we have ticks all year long. If there's a slight rise in temperature we seem to get a real bloom. And I had read at one point that if you have had a tick on you that taking a single 200 milligram dose of doxy can thwart an infection. And I wondered if there's any truth to that.
SHORI would like to address that and that certainly is part of the paradigm that the IDSA promotes. But unfortunately the study that promotes that guideline did not take a particular extensive period of time to follow folks for the assumption that it worked. There are many of us who feel that in fact that can change the body's response, the antibody response and make it more difficult to detect and probably is inadequate for a prophylaxis.
REHMDr. Fallon, do you want to comment?
FALLONThat initial study that was reported didn't have an extremely long follow-up time. So I think that more work needs to be done in that area.
REHMAnd, Elizabeth, how long ago was it?
ELIZABETHIt was about seven years, I think, and I have had no residual symptoms, so I'm very fortunate in that respect.
REHMWell, I should say. Dr. Shor.
SHORNo, I think that's wonderful that you've had no residual symptoms and that you're vigilant. And hopefully you'll be well for the rest of your life.
REHMAnd this whole issue of being vigilant when these creatures are so tiny is the part that bothers me. You've seen these ticks, Dr. Shor.
SHORYes, and it's important for both parents and parents supervising their children to be very aware of environments that may be at risk, that they do tick checks frequently and that they be very careful and cognizant of that.
REHMDr. Samuel Shor at George Washington University. When we come back, more of your calls, questions, comments. I look forward to hearing from you.
REHMAnd we're back talking about Lyme disease, its difficulty in diagnosis and questions about long-term treatment. Here's a fascinating email from Tori and she says, "My sister who's lived in Connecticut most of her life was diagnosed with bipolar disorder, was heavily medicated over ten years. She was a mess, unable to keep a job and a danger to herself. Finally, physical symptoms led us to multiple doctors at which time we found out she had off the charts Lyme. She was treated for over a year, is now married, has a child. But we will take -- she will be treated off and on for the rest of her life." Dr. Fallon, I understand you've done research on the connection between Lyme disease and bipolar disorder.
FALLONYes. I am very interested in the fact that Lyme disease is caused by spirochete just as syphilis is caused by spirochete. Syphilis is well known to cause psychiatric problems and so too Lyme disease can cause psychiatric problems. So I, in fact, have encountered patients who had a full blown manic episode. And then only after careful investigation do you discover that two years earlier they had had an episode of Lyme arthritis. And then when you study them further, you find that there's still evidence of Lyme in their bodies and so you treat them with intravenous antibiotics 'cause it's probably in their central nervous system.
FALLONAnd in the cases I'm thinking of, these patients have gotten dramatically better. So certainly Lyme disease can affect people who have Bipolar Disorder independent of the Lyme disease. And that's gonna be the case most of the time. And they may not have anything to do with one another, but it's also true that Lyme disease sometimes can initiate a manic episode or a psychotic episode. And unless it's recognized, it could have devastating consequences for that patient.
REHMAnd you, Dr. Shor, have made a connection between chronic fatigue syndrome and Lyme disease.
SHORThat's correct. I did a retrospective analysis of my patients. And out of 210 patients who otherwise fulfilled a criteria for chronic fatigue syndrome, including negative testing according to the standard criteria for Lyme disease, subsequently identifying and responding to treatment that I felt 88 percent of the 210 actually had active Lyme disease.
REHMInteresting. All right. To Andrew here in Washington, D.C. Good morning, you're on the air.
ANDREWHi, Diane. Of course I love your show very much.
ANDREWAnd I'm calling about my otherwise very healthy 11-year-old dog. He went to the vet a week ago and she said he's so healthy for his age. And then that night I got a call that his stool specimen had tested positive for the presence of Lyme bacteria. And he's now on a month of antibiotics. And I'm wondering what are the ramifications or what are the issues surrounding dogs? Because I did some reading and I saw that even though that a dog may have antibodies, it doesn't mean that they actually had Lyme disease.
BARTHOLDI'm not aware of a stool test for Lyme disease, so maybe it was a blood test that was done also. But certainly Lyme disease occurs in dogs. And we see in Lyme endemic areas a high level of (unintelligible) prevalence among dogs, that is their antibody positive, but may not be listed in clinical science. But if you treat those animals with antibiotics, you change their behavior as if you're improving their health. Dogs are probably the only species that I've encountered that also occasionally develop a fatal form of Lyme disease, which attacks their kidneys, known as glomerulonephritis. It's a very serious outcome that is virtually untreatable.
REHMWell, Andrew, I certainly hope your dog recovers completely and is otherwise in good health and remains that way. Thanks for calling. To Fort Worth, Texas. Good morning, John.
JOHNThanks for taking my call, Diane.
JOHNI'm glad I caught the show this morning. I actually had -- I'm 32. And I had Lyme disease when I was eight years old. And it was actually after a trip to Connecticut to visit my aunt. And I was not diagnosed for almost a year. And a trip to the emergency room in Fort Worth, a doctor that happened to have practiced in the Northeast area and recognized the symptoms and tested me and came back positive and had the rigorous antibiotic course and treatment and recovered. But my question was, was simply this, you've touched on some things that have been issues for me over the last couple years, fatigue.
JOHNYou know, I frequently have muscle aches and joint problems. But otherwise I'm healthy. I'm physically active. And in the last couple years the chronic fatigue has been getting worse and worse. And the (unintelligible) from my position is more exercise, more sleep, eat healthier. And I do all those things. But I was just wondering, is there a good resource or somewhere that you can recall or your guests could recommend that, you know, I could do some research on my own and maybe answer a few of my own questions? Because it's becoming something that I'm increasingly concerned of and...
JOHN...I didn't realize that there were ramifications until the show. I didn't...
REHMInteresting. Dr. Shor.
SHORYes, a couple thoughts. One is that you can go to www.ilads.org and that's a professional organization to try to promote education in this entity. And the work that I've done identifies a complex of fractured non-restorative sleep, fatigue, often blood pressure abnormalities where there's a drop when you stand, hormone problems that often are a chronic manifestation of ongoing infection. Not everybody. And I know that Brian Fallon and others feel that there's autoimmune component to some of these folks, and I agree. But I believe that a fairly substantial proportion actually have ongoing manifestations of chronic infection.
REHMAll right. And to St. Louis, Mo. Good morning, Heather.
HEATHERYes, hi. I'm sorry. My dog's barking in the background. I was just diagnosed with Lyme about three years ago, a chronic case in which about 12 years ago, I had a flare up that was undiagnosed. And so when I was initially diagnosed, I went on the antibiotics, oral antibiotics, and had, you know, sicknesses and didn't deal with them well. And so I've switched, you know, antibiotics and just didn't find any results. So I've gone completely off antibiotics, but stayed on, you know, hormones and things that we found that I was low in. But I'm wondering if your guests have done any testing on or is there any proof that natural remedies work?
REHMNatural remedies such as what?
HEATHERWell, such as I'm trying to go on a high raw diet and I've heard that gives a lot of relief, which I do find that I do feel better. But I'm wondering if it actually produces any results against the bacteria.
SHORI'm not familiar particularly with a high raw diet. There are other complimentary approaches and not much literature support. There was a small study in a test tube by Eva Sapi in Connecticut that looked at Banderol and Samento which are two herbals that show to be in the test tube more effective than Doxycycline for the strain of Borrelia that was tested. But that goes to the fact that we need to do a lot more research in terms of identifying new drugs, identifying protocols, identifying what herbs work, what don't. And -- but the points are well taken.
REHMDr. Fallon, what about the question of switching from one antibiotic to another? How might that affect the course of Lyme disease?
FALLONThat's commonly a practice that many physicians do. If a person has plateau-ed in their improvements with one antibiotic, they might try another. And I know there have been a number of studies which have compared different antibiotics. So, for example, there was a study done comparing Zithromax to Amoxicillin for early Lyme disease. And what they actually found was that Amoxicillin was performed better than the Zithromax. So, in general, some antibiotics may be more potent than other antibiotics.
FALLONOn the other hand, if someone's not responding to the standard antibiotics, then there's good evidence if they have Lyme disease, you might consider trying different acting agents. Another thing that hasn't been mentioned in this call is that patients may have co-infections with other tick borne organisms that can be causing some of their symptoms. And if those tick borne organisms such as Babesia aren't recognized, then the person may be suffering with profound fatigue and look like they have chronic Lyme symptoms when, in fact, they have another disease caused by tick borne agents that needs a different type of treatment.
FALLONSo certainly if after an initial course of treatment with antibiotics for Lyme disease a person hasn't gotten better, substantially better, then certainly consideration should be given to the possibility that there might be another tick borne agent.
REHMAll right. Dr. Shor.
SHORYes, Brian, I'm glad you mentioned that because I was about to mention the co-infections. We classically say Lyme disease and we think of infection with Borrelia, but more and more cases, people are being infected with these co-infections, Babesia, Bartonella and others, and that can confound their presentation, make it more difficult for them to be treated. There are certain classical presentations. For example, with Babesia, people present with fatigue and sweats very often, headache. It's a malarial like parasite that's in the red blood cell. And if that's present, then that needs to be treated. And the standard protocols aren't generally gonna work. Although it is often responsive to Doxycycline, like meds, it often needs something more.
REHMTo Pinckney, Mich. Good morning, Beverly. Beverly, are you there? I think not. All right. To New Bern, N.C. Good morning, Alice.
ALICEGood morning. How are you?
ALICEThat's good. I just wanted to let you know that I was diagnosed with Lyme disease in 1999 in Rhode Island along with two co-infections, but I went mistreated for one year, so the health really declined to the point where I had to leave my work, sell my house and I relocated from Rhode Island to North Carolina. I'm currently under treatment by Dr. Joseph Jemsek in Washington, D.C. And one of the main reasons is because I cannot find really competent doctors or educated doctors in Lyme disease that much in North Carolina, nor do they find -- nor are they serious about it. And sometimes some even ridicule when I give them all the symptoms I have. And I find that unfortunate because I'm probably not the only one that runs into this.
REHMI'm sure you're not. And you're listening to "The Diane Rehm Show." Dr. Shor, is it the case that too many doctors simply brush off...
SHORYes, Diane. And unfortunately, that's a manifestation of the guidelines that are being promoted that it is a well easily defined, easily treated condition that unfortunately, as I alluded to early in terms of the perfect storm, very often people are presenting with common symptoms that are not associated with any significant physical findings, the tests are insensitive. And unfortunately they're often marginalized as are clinicians who are trying to treat these folks in creative ways.
SHORBecause, unfortunately, there's not a lot of research and literature to support much of what's being done and we have to make decisions at the point of care, recognizing there are ill people and that research needs to be done. But until that is done, we need to be vigilant in listening to patients, empathic and moving forward in trying to treat these conditions.
REHMAnd to Scottsdale, Ariz. Hi there, Hared.
HAREDYes, hi. Good morning, Diane.
HAREDI have a friend, a dear friend, who's had Lyme disease for 20 some years. Recently diagnosed with cancer, went to chemotherapy and as a result, has not had any Lyme disease symptoms for at least three years since the chemotherapy. Has anyone on your panel encountered this scenario?
FALLONChemotherapy did you say?
FALLONYeah, I don't know what to say about that honestly.
SHORI don't either. Other than to say that there clearly is going to be an immune response and somehow presumably that treatment has impacted that. But I've not seen that personally.
REHMAnd finally to Madison, N.H. Good morning, Kirk.
KIRKYes, good morning. I wanted to just say my son was positive when he was five years old. After three years of long-term medication of supplements, microbacteria, antibacterial supplements and also a combination of antibacteria, he finally became negative after several years. We performed quarterly blood tests that are extensive across all his, excuse me, across his infections, the co-infections and also his blood work to monitor his overall health. And because of that we've helped the doctor really identify what is working, what is not working.
REHMThat's very interesting. Dr. Shor.
SHORNo. I'm glad that it sounds like things are working for you. Unfortunately very often the tests that we have available are not very sensitive and very often those like myself often follow people clinically and make decisions clinically without over-testing.
REHMAnd finally to you, Dr. Barthold, we have an email from Doug asking about whether there is any vaccine in development.
BARTHOLDI'd say there was a vaccine in development. Actually at the very beginning of my research and 25 years ago, two groups had developed a recombinant protein vaccine based on outer surface protein A. That vaccine, unfortunately, took a hit in our litigious society and SmithKline Beecham decided to pull it off the market. It was not perfect and there were side effects, but it could've been improved upon, but it just failed. Ironically, such a vaccine is available in the veterinary community and we use it in dogs.
REHMAll right. I thank you all so much. Stephen Barthold of the University of California, Davis, Dr. Brian Fallon of Columbia University, Dr. Samuel Shor, an internist in private practice, also associate clinical professor at George Washington University. And thanks for listening. I'm Diane Rehm.
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