Episode 24: Cutting-Edge Lyme Research

Cindy Kennedy, FNP, is joined by Dr. Brian Fallon, director of the Tick-Borne Disease Research Center at Columbia University, who discusses the cutting-edge Lyme research that they are doing at the center and how their research is improving treatment.

Dr. Brian Fallon

Dr. Fallon is internationally renowned for his work on the neurologic and neuropsychiatric aspects of Lyme disease. His work has also included diagnostics and treatment studies.

Dr. Fallon is professor of Clinical Psychiatry at the Columbia University College of Physicians and Surgeons. A graduate of Harvard College, he obtained his M.D. degree from the Columbia University College of Physicians and Surgeons, as well as a master’s degree in public health epidemiology from Columbia University. He did his research training and an NIH fellowship in biological psychiatry at Columbia Presbyterian Medical Center and the New York State Psychiatric Institute.

Dr. Fallon’s research has focused on neuropsychiatry – the discipline that studies the behavioral and mood effects of diseases that affect the brain.  His particular areas of research focus in Lyme disease include phenomenology, diagnostics, neuroimaging, biomarker, and treatment studies.  His expertise in psychiatry includes neurocognitive testing, clinical trial development, obsessive compulsive disorder, and hypochondriasis. Dr. Fallon has published over 100 peer-reviewed articles, review papers, and book chapters and he has served as a reviewer for many journals, including JAMA, Journal of Infectious Disease, Clinical Infectious Disease, and the American Journal of Psychiatry.

Transcript of Episode 24: Cutting-edge Lyme Research

Cindy Kennedy: Hi everyone out there. This is your host, nurse practitioner Cindy Kennedy, and you’re listening to another episode of “Living with Lyme.” We’re very fortunate to be able to talk a bit about research today with a wonderful researcher. His name is Dr. Fallon, and he is the center director over at Columbia. And it is the – tell me if I’m wrong – it is the only center that has a university base, is that correct?

Dr. Fallon: That’s not quite correct because…

Cindy Kennedy: Oh dear! Go ahead, tell me what it is. Okay, go ahead.

Dr. Fallon: That’s all right. We’re focused at the Columbia University Medical Center, but there are other research centers focused on Lyme disease, such as the Johns Hopkins Research Center, which is at Johns Hopkins University Medical Center. I don’t know of any other specific centers, but certainly they have one as well.

Cindy Kennedy: You know what I was thinking? And as I look back here, you guys were the first research center established as an academic medical center. That’s what it was.

Dr. Fallon: That’s true!

Cindy Kennedy: That’s what it was. Well, Dr. Brian Fallon is a physician and his area of expertise overlap both medicine, neurology, and psychiatry. His team is particularly interested in medical causes of neuro-psychiatric disorders with Lyme, and he’s been on the forefront of research portfolio, and we’re going to actually talk a bit about it. The people in the Lyme community are I think falsely aware, or not aware, that there is not a lot of research out there. So, this is going to be excellent, just to give people a tip of the iceberg of what’s going on out there. So, give me how you got into this realm.

Dr. Fallon: Sure! Well, I first got interested in Lyme disease in the early 1990’s because of a family member who became sick with Lyme disease, and whose story parallels many of the stories that we hear right now in terms of difficulty initially diagnosing the illness, problems with relapse after initial course of treatments. And, that got me interested in the controversies associated with Lyme disease, such as “How do you diagnose it, and how good are the diagnostic tests?”
I remember early on in the early 90’s, at some prominent medical centers, people were telling me that “Oh, our tests are 99% sensitive.” And, I knew that wasn’t true. I couldn’t quite understand why they were saying that, but that’s what I was being told, so that was something that needed to be studied. Another thing that needed to be studied was all these patients with chronic symptoms that were being told that they were hypochondriacs, and I, at the time, was researching hypochondriasis, and I knew what a hypochondriac looked like, and I knew what the pattern was, and what the profile was like, and the patients with chronic symptoms after Lyme disease, or associate with Lyme disease did not have the typical hypochondriacal pattern. So, I knew it wasn’t hypochondriasis, so I thought, “Well let’s see if we can find some more objective ways to quantify what’s going on with these patients.”
What medical doctors don’t feel comfortable with, often, are subjectivisms. If someone comes in with pain, or fatigue, or cognitive problems, but there’s no blood test that confirms that, the infectious disease doctors, in particular, don’t know what to do with that.

Cindy Kennedy: Is that why they just kind of ignore it? I mean, you had come out of medical school and were you not given a lot of information about Lyme disease? I mean, the portrayal that we hear about is that it’s kind of skimmed over.

Dr. Fallon: I think that is still true in many medical centers throughout the country. At the very least, there are questions about Lyme disease on the boards so people, on the medical boards, so people do have to know that Lyme disease can cause Erythema migrans rash, and that the treatment is with doxycycline or amoxicillin. So certainly I think medical graduates today are learning those basics as well as the Lyme arthritis that can develop, and the neurological sequelae. But they’re certainly not learning much at all about the neuro-psychiatric features, nor are they learning much about post-treatment Lyme symptoms, and the fact that there actually are objective biomarkers of disease.
That’s one of the actually most exciting things I think is going on right now, which is that, I’ll have to say that 10 years ago, 15 years ago, research was really difficult. There weren’t many people studying the chronic symptoms associated with Lyme disease, or trying to develop new diagnostic tests, or interested in finding biomarkers that might tell us who has Lyme disease or who doesn’t, or what treatment is appropriate for one person versus another. But now, there are people all around the country taking seriously the problem of chronic, persistent symptoms, and taking seriously the need to identify either immune markers or new co-infection tests to look for what other tick-borne diseases a patient might carry.
Or, where we’ve spent a lot of time in our work looking at neuroimaging or brain imaging patterns that patients with chronic symptoms have, which is another way of objectively confirming that these patients, they’re not hypochondriacs. They have something definitely going wrong with them, and that can be shown, and it has been shown in the blood flow studies that we’ve done, in the brain metabolism studies that we’ve done. It shows that these patients have multiple areas of decreased blood flow and decreased brain cell metabolism that is very different from what you see in healthy people of the same age.

Cindy Kennedy: How do you see brain metabolism? What are you seeing on these spec scans or MRIS?

Dr. Fallon: Yeah, that’s a great question. So when you’re looking at, there’s two main types of imaging studies. There’s one that’s called a structural study and there’s one that’s called a functional study. So the functional studies look at the functioning of the brain and the structural studies look at the structure in terms of what damage might be done to the tissue itself. So brain MRI typically looks at the structure of the brain and tells you, well, is there a tumor there or is there inflammation going on? Or is there a area of decreased blood flow or oxygen causing ischemia, so that you actually might see an abnormality on the MRI scan that might come out like a white matter hyper intensity?
That’s what an MRI typically shows, whereas the pet scans and the spec scans, those scans are useful for looking at the functioning of the brain, so spec scans look at the blood flow and pet scans can look at both. But typically, when you order one at a medical center, what they do is they inject into you a small amount of radioactively labeled glucose, and that goes into your blood and then it goes up to your brain, and your brain cells need glucose in order to function, and so if the brain cells are especially active, that area in the brain will take up more glucose than an area of the brain that’s less active. So it tells you about the activity of the brain, and in patients with Lyme disease, the temporal and the parietal lobes to specific area of the brain tend to show a decreased uptake in those areas compared to age and education and gender-matched controls.

Cindy Kennedy: So we hear a lot about the pet scans. We hear a lot about their use in cancer.

Dr. Fallon: Yes.

Cindy Kennedy: Simply because the tumor, it’s the same type of thing, you know, needing that glucose uptake because they’re rapidly dividing all those cells and then you can actually find lesions, so that’s interesting. One of the questions is if you’ve got somebody that is showing this type of change in the brain, they’re treated, they’re getting better, maybe a lot of their symptoms are resolving, do you see those areas in the brain actually recover?

Dr. Fallon: Yes, they can recover. They don’t recover necessarily as quickly as the clinical symptoms, so it’s certainly true that I’ve seen patients get much better clinically, meaning their memory improves, their verbal [inaudible 00:08:37] improves, their fatigue diminishes, and yet the spec scan looks just as horrible as it did six months earlier.
That is discouraging to patients, but what I tell patients is, “Look, the spec scan will get better, it just takes time. And the other thing is that, as you get older, even if you don’t have Lyme disease, your spec scan is going to start deteriorating because with time, our blood flow and our brain has greater challenges and diminishes.” So in general, I don’t order spec scans anymore unless it’s with a young person because young people should have normal looking spec scans with good flow, and if it shows that pattern of heterogeneous hypoperfusion, then I think, “Well look, this needs to be taken seriously that there’s something going on in the brain that could be related to the Lyme infection and maybe this person needs a different, more intensive type of treatment.” In people who are older, it’s harder to make those judgements because there’s so many different reasons why someone might have decreased blood flow.

Cindy Kennedy: Now you’ve had over a ten year period, at least eight hundred people that you’ve been utilizing in your studies, and so they have the opportunity to have these type of tests. What happens with patients who are being cared for by people who are dealing with the cognitive issues associated with Lyme? Are insurance companies, do you know if they’re paying for these?

Dr. Fallon: Insurance companies, in terms of the neurocognitive tests, or in terms of the brain imaging?

Cindy Kennedy: Yeah, the imaging.

Dr. Fallon: Okay. The imaging generally would not be paid for by the insurance companies unless the doctor who’s ordering it says, “I’m interested in seeing whether someone has, let’s say, multiple sclerosis” because their symptoms are typical of multiple sclerosis. And then the brain MRI would be covered because that would be an indication. In terms of the blood flow studies, some insurance companies might fund a pet scan, would probably fund a pet scan, if there’s a question about dementia, for example. Is this a person who might have early onset dementia with memory problems? And we know that pet scans are useful in helping in a diagnosis of Alzheimer’s disease, for example. So there are ways in which pet scans can be paid for by insurance companies, but the doctor needs to use the right coding strategies.

Cindy Kennedy: Right. Right. That’s a sad state of affairs, you know, that you have to work around. And you know, we do know that people are diagnosed with these neurologic issues like MS and actually it isn’t necessarily MS, so I guess that’s kind of like a work around. Well you know what that’s [crosstalk 00:11:29] … Go ahead. Go ahead.

Dr. Fallon: Well, it’s also true that these indeed are in the differential diagnosis of Lyme disease, so I don’t think that it’s unreasonable or false to actually put those things down as the reason you are ordering the tests. So, I think it’s reasonable to do that.

Cindy Kennedy: Right. Now, I want to tell everyone that your center has released a brand new book, and it’s called Conquering Lyme Disease Science Bridges the Great Divide. It’s a look at history and clinical and lab tests and controversies and scientific breakthroughs that we are hoping make a lot of change because we are really hoping very much that we can see change and people who have, especially the chronic disease we’re not lucky enough to have the bullseye or the erythema migrans, that they have something to look forward to. So, let’s hear all about that book.

Dr. Fallon: Ah, this is an exciting story, and it’s an interesting story.

Cindy Kennedy: I’m ready.

Dr. Fallon: It’s an interesting story too. It started because about four years ago I had a medical student in between first and second year do an eight week fellowship with me. This fellowship was due to funds that had been given us several years earlier to support the training of medical students before they became disinterested in the PASA and learning about Lyme disease. So, I had this student with me, and I was thinking, I don’t want this person trailing me all day long and distracting me so let me give her something interesting to do. So I said look, download the material from my website. Let’s update it and we can create a manual on Lyme disease. Jennifer Saske is her name and she had a Masters in Narrative Medicine, so I knew she could write, so she did that. She spent her eight weeks doing that. She produced a really nice preliminary manual by the end of the summer and I said, look this needs a lot more work. Do you have any interest in pursuing it during your medical school training?
As you can imagine, medical school students are enormously busy and they have a thousand things to do and it’s very rigorous and difficult, but she said sure. Every three months she would come back to me with the latest update and after a while I thought she would get tired of it. It would require a lot of work from my part to get it ready for publication, but she kept coming back and each time it got better and I would give her new projects to work on, and it got better.
So, finally about two years ago she showed me what she had. It was really good, but not good enough or interesting enough to me to get published. So, then I was thinking well I give a talk … I started giving a talk called The Good News About Lyme Disease Research and patients seem to love this talk and I loved it because it shared with the patient community all of the tremendous exciting breakthroughs that were occurring in science to help in the diagnoses and the search for bio markers and prevention and in treatment. Literally since 2008, so the last ten years, there have been enormous breakthroughs, and it’s really because science has advanced so dramatically and so exponentially.
Just to give you an example, in the early 2000’s the cost of sequencing one human genome is estimated to have been between five-hundred million and one-billion dollars. [crosstalk 00:15:02]

Cindy Kennedy: Why? Why is it so expensive?

Dr. Fallon: That was way back then because they didn’t have all of the fancy genome sequencing technologies that we have today.

Cindy Kennedy: I see.

Dr. Fallon: Now, its so automated and so quick you can get a human genome sequenced for eight-hundred to one-thousand dollars. So, when you think going from one-billion dollars to a thousand dollars, that just shows how super fast it is possible to science these days. In the old days it would have taken two or three years to get the sequence. Now you can do it in a week or a few days. So, this is great news for everybody involved with research. It makes it more cost efficient and super fast.

Cindy Kennedy: Isn’t it amazing that we’re all linked? You know, if wasn’t for these geneticists pushing and doing more, then we wouldn’t, in the Lyme world, have more information and better testing. So, it just goes to show you that one had leads to the next hand, right?

Dr. Fallon: Yeah, exactly. So for example … I will just give you some examples of stuff that we have thrown into the book and that I find super exciting. So, for example one of the big problems is diagnostics.

Cindy Kennedy: Exactly.

Dr. Fallon: We all know that the antibody tests are problematic and yes there has been a lot of progress in developing better antibody tests, and some will be coming out on the market in the next year, but nevertheless antibody tests will always have their problems. Which is, number one, it takes a few weeks(two to three weeks) for the antibodies to form after initial infection, and number two the antibodies stay present for months to years after the initial infection. That doesn’t tell you whether you still have active infection.
PCR tests, looking for the DNA, they can’t help us as much either because the Lyme spirochete doesn’t stay in the blood. So, what do you do?

Cindy Kennedy: Exactly. Yeah.

Dr. Fallon: The antibodies aren’t helpful, and the PCR isn’t helpful, so what do you do? There’s two really interesting approaches, or three, that people have taken recently. Number one, lets see if we can devise a test similar to what exists for tuberculoses where you look at the T cells to see if they have recently seen the Borrelia spirochete. If they have recently seen the Borrelia spirochete and you challenge them with a small amount of the spirochetal antigen, the Borrelia antigen, they’re going to produce a much greater cytokine response than those T cells that haven’t. So that tells you whether the infection has recently been present in the person’s blood, so that is an extremely promising test [crosstalk 00:17:46]

Cindy Kennedy: Is this part of your testing? Is this part of your research?

Dr. Fallon: We have tested that a few years ago. We were working with a company in the development of that kind of [inaudible 00:17:55]. We were looking at macrophages where other people were looking at T cells.

Cindy Kennedy: Okay. Tell everybody what those terms mean, because people are gonna go, “T cells?”

Dr. Fallon: Yeah. So I’m sorry! I’m sorry, sorry.

Cindy Kennedy: That’s okay. You know? Everybody wants to understand this in the best way they can.

Dr. Fallon: Sure. So the easiest way to understand it is when the infection first gets into your body transmitted by the tick, the body tries to fight it off, and it produces an inflammatory response. As part of that very early inflammatory response, you get monocytes or macrophages, which are single cells that gobble up the invading microbes. So one thought was, “Let’s take some of the cells, those monocytes or macrophages, and see if we challenge them with the piece of the Borrelia parkeri, if they produce a much higher cytokine response.” And so the initial tests that were conducted in Europe produced very promising results.
So we were collaborating with a company to validate that study farther. Other people around the world have been looking at the T cells. Now the T cells develop a little bit later, in terms of developing a specific response against the Lyme organism, but they too could be a marker of active infection. So both are very promising approaches. The one in Europe was called sporophyte and then there was some Ispot Tests, which were being conducted both in Europe and the United States [crosstalk 00:19:37]

Cindy Kennedy: Right, the Ispot Lyme. I’ve heard about that.

Dr. Fallon: Some of those are actually being offered. Some of those are being marketed currently. I think … my guess is that those tests are still in development from my understanding from the experts that are working on these tests is that they haven’t yet … I’m not talking about the Ispot. I’m talking about the other tests that are in development because I know they’re better. It’s still no perfected to be a sensitive and specific enough as they would like, but once that happens I think they’ll be really thankful. Another wonderful diagnostic test that looks promising is based on the metabolites in the blood. So, what lipids, what proteins, what genetic markers are floating around in the blood that’s called the metabolites or the metabolome and if you create and essay using what’s called holometabolic, you can actually … as has been done by people in Colorado, Claudia Mullins is the person who has done this. She has identified a holometabolic profile that’s about 80% sensitive in early Lyme disease, which is much better than the 35-50% sensitivity of the [inaudible 00:20:48] so that’s over 80%.

Cindy Kennedy: That’s the Eliza in the western blot. I just wanted to let you know what that is.

Dr. Fallon: Right, so it’s much better. Exactly, much better than the Eliza in Western Blot, and it looks quite specific as well. Meaning that you won’t have false positives, so that’s a very promising test result. So, there are lots of … And it is also possible that the metabolites after cure will go back to normal. So it could also be a test of cure. Those are studies that are currently in development.
So, that’s very exciting on the diagnostic front and certainly on the treatment front, at least in terms of what’s being done in a laboratory, there’s a lot of work being done by different groups around the country. Everybody I think is familiar with persister spirochetes and the notion that, even though doxycyline and amoxicillin kill the vast bulk of the spirochetes they don’t kill of the spirochetes. There are some that are still left, and those are called the persister spirochetes and in the animal model, at least, we know that that’s a reality, and it’s been shown in the mouse and the monkey and the dog that this problem of persistence occurs.
So what is happening now in research is trying to see what would happen, does this in fact happen in humans as well? And so there was an NIH study conducted by Linden Hough, [inaudible 00:22:11], and Adriana Marquez at the NIH, and that looked at weather peristent spirochetes could be found in humans after antibiotic treatments. And in one report that was published a couple of years ago, one of the nine previously treated humans did in fact show persistent spirochetes, so at least it shows concept that the spirochetes can also persist.

Cindy Kennedy: Why can we see it in the animal models and not so easily in the human model?

Dr. Fallon: Well, I mean, animals are easy to study right? You have a ready subject there who is okay about having tics attached to them and the humans, it could be that the tics aren’t as efficient as they are in mice. That’s one possibility, in sucking up the spirochetes. It could be that the spirochetes are more diffusely distributed or are in smaller numbers or it could be that the spirochetes aren’t there. That’s a possibility as well. So it could be that some of those patients with persistent symptoms did not have persistent spirochetes and that’s why the tics didn’t detect them, or it could be that there that some of them did and that particular methodology wasn’t sensitive enough.

Cindy Kennedy: So going back to your [crosstalk 00:23:27] Oh I’m sorry. Go ahead.

Dr. Fallon: If you don’t mind. One thing I wanted to emphasize for the patient community is that, there are a lot of reasons why patients may have persistent symptoms. So, for example, it’s not just persistent infection. It could be that there is an unrecognized co-infection. So, certainly you want the individual to be tested for possible other co-infections. These days, for example, in addition to tests for babesio anaplasmo when indicated I might also … I often do in fact test for Borrelia Miyamotoi, which is new tic born organism which has Lyme like symptoms for which the blood tests might come back negative, so that’s a useful thing to do. [inaudible 00:24:08] Massachusets they developed the first essay for Borrelia Miyamotoi.
Another reason why a person might have persistent symptoms is that the prior infection caused a change in the immune response, such that there is an ongoing immune activation. So if the cytokines that those products of the immune system continue to be produced, you can experience brain fog, confusion, fatigue, and pain as well. That’s one reason.
A fourth reason would be that there have been changes in the brain and how the brain functions as a result of the prior infect. We know, as I’ve mentioned, that the blood glucose and the blood flow is not the same as it used to be in some of the patients. Well it could be that instead of treatments that try to eradicate the infection, which may no longer be present, treatments that focus on correcting the brain abnormalities or the brain pathways or the brain circuits that aren’t functioning as well can reset the balance in the brain to a normal function.
That’s actually the exciting thing. We know that there are a lot of ways of correcting neurotransmitter function in the brain. So someone might need to be on some medication for six months or a year and then the brain pathways will hopefully be normalized and then they can come off that medication. They can then find themselves thinking much better and having more energy and less pain.

Cindy Kennedy: What type of medicine are we talking about?

Dr. Fallon: Well it could be a variety of different approaches. Anything that modulates the brain pathways. So it could be neurotransmitter modulators, such as you see with medicines that rheumatologists use or psychiatrists use. For example, something as simple as amitriptyline at night, which is an old anti-depressant which at low dosage has tremendous properties in terms of relieving neuropathic neurological pain as well as arthritic pain. It also helps deepen sleep. So a low dose of that at night can go a long way in a lot of patients to helping them.
There are a group of medicines called the serotonin norepinephrine reuptake inhibitors and those are very good. That’s a group of anti-depressants, but they also have been approved for pain syndromes. Neurologic pain in particular. They help to quiet down the pain sensors of the brain.
We are doing a study right now actually where we are looking at the pain centers of the brain and we are trying to recruit patients who have persistent pain after Lyme disease and then we put them into the brain scanner and we look to see what their brain chemistry is like. We look to see how their brain pain pathways are functioning and then we’re giving them a modulator of the neurotransmitter function that we hope will normalize it and then we are going to repeat the scan and check to see if they are clinically better.
So that’s one example of how you can modulate the brain pathways. Another way is using magnetic stimulation of the brain. Something called transcranial magnetic stimulation. That actually is very helpful, we know, and it’s FDA approved for depression, but many of the clinicians who treat patients with magnetic stimulation find that low and behold it also is very helpful for people with diffuse widespread body pain. So, many of the patients that come to see us for example, they don’t really want to take another medication. They are tired of medications, but they are very interested in the notion that maybe this transcranial magnetic stimulation may help them. That’s available throughout the country, through experts who know how to deliver the magnetic stimulation, and the nice thing about it is that there aren’t really any side effects to it. It’s quite safe and useful.

Cindy Kennedy: You know you mentioned recruiting patients. Is there … I know that generally speaking you want people who are in your local area that can come in to see you and do this, but if you’ve got some New York based people or maybe New Jersey or people that are close enough to come in and be part of your studies, how do they get information about that?

Dr. Fallon: Well they can go to our website which is www.columbia-lyme.org or they can call our screening number and start the process which is 646-774-7503.

Cindy Kennedy: Well that’s great. I think that’s important, because I think that the majority of us people that have been out there and not diagnosed and you know, the whole system that you are trying to get diagnosed with is like being a ball in a pin-ball machine. You are just like boing-boing, over here, over there, and at that point the frustration that you have is big. And so all the information that you’ve just given us, your book, what type of audience would enjoy your book?

Dr. Fallon: Oh, I hope that the patient community will enjoy it. There’s some wonderful chapters in there certainly about the experience of chronic illness. There’s a really helpful chapter on various prevention strategies including ones that are under development right now. That’s very exciting. There’s an F-A-Q, which is Frequently Asked Questions, at the end of the book, that address the questions that patients often ask us. So it’s written in a style that I hope an educated person who doesn’t know much about Lyme disease can learn a lot, but it’s also written so that physicians reading the book can learn a lot that they might not know about Lyme’s disease. So, for example, we put in fifteen clinical cases, most of them that come directly from the New England Journal of Medicine or other major publications of fascinating cases of patients who have struggled with Lyme disease either in neurologic Lyme disease or arthritic Lyme disease or Lyme disease affecting the eye or Lyme disease affecting the heart. So I’m hoping that both doctors as well as patients can learn a lot from the book and we were really happy to say Nature Magazine, which is one of the preeminent journals in medicine, reviewed the book a couple of weeks ago and they gave it a really, really favorable review, so I was happy to see that.

Cindy Kennedy: Are your test subjects adults or do you do children as well?

Dr. Fallon: Oh, that’s an interesting question. Our test subjects, right now, are adults. However, we just hired a physician trained in child’s neuropsychiatry to help us work with children. She is working with doctors and pediatric neurology and in basic neuroscience because we want to address the problem of nuance that neuropsychiatric disorders in children. So including those caused by Lyme disease as well as caused by things like Group A strep and other infections.

Cindy Kennedy: Right. That’s great.

Dr. Fallon: Yeah.

Cindy Kennedy: I guess we are in an exciting time frame, and, again, before we wrap up here, I do want to thank you. And this, again, was Dr. Brian Fallon, and he has been a lead researcher working at the Columbia University. Now, I do have a couple questions for you, and the first question is: What ticks you off?

Dr. Fallon: Wow. That’s quite a question.

Cindy Kennedy: I love to spring that one on people. What ticks you off?

Dr. Fallon: I think what bothers me the most is when patients are treated with disrespect. You know, I can understand physicians not knowing much about Lyme disease. I can understand physicians who might feel that chronic persistence infection has not been well-proven in humans. I can understand all of that. What I don’t understand is when patients end up leaving their physician and feeling ashamed or embarrassed or humiliated by the doctor who says, “Look, you’re making up all of your symptoms,” or “This has nothing to do with Lyme disease.” Well, you know, having worked in this field for so long, I know enough to be humble about this illness and that I’m sure there are patients who I have misdiagnosed, either as having Lyme disease and I didn’t, or as not having Lyme disease and I did. So I’m sure I’ve made mistakes, and I know we all make mistakes, and hopefully we do our best and we work with patients collaboratively. So that’s what bothers me the most.

Cindy Kennedy: Yeah. When I get to a point where I’m kind of stumped with a patient, I usually ask them, “What do you think it is?” And just validating whatever they have is so important because the frustration level that people have and where do I go next and what can I try, and I need somebody to really understand that these symptoms that I’m having are really true, so that’s a good point.

Dr. Fallon: Yeah. And one other point, which I guess is a hope for the New Year for me and patients, which is that people maintain – especially patients who have been through lots of different antibiotics, which many of the patients we see, have – stay open to the possibility that there are other approaches to treatments outside of antibiotics that might be very helpful. And the hardest thing, for me, is when patients come in with a very rigid mindset as to what can help them or what can’t. You know, the only reason you’re coming to see a doctor is to really hope for some new ideas, and so if patients stay open and flexible, as well as the doctor, I think that’s best for everybody.

Cindy Kennedy: That’s very important. Okay, my last question: I got Lyme disease and I had a choice of being very sour or making good with it, and so my Lyme and my lemon, cause it’s sour, has been lemonade. What is your lemonade?

Dr. Fallon: Well, you know, Lyme disease has been a challenge. Both for the patients, as well as for me as a researcher. It’s a challenge because sometimes it’s hard to get funding. Sometimes, as you all know, there are antagonisms within the medical community and sometime studying Lyme disease is not the most popular thing in the world. So maybe that’s the difficult part of studying Lyme disease.
The wonderful part about studying Lyme disease is that, number one, you’re dealing with something that people are struggling with, and they really want help with, so you’re clearly meeting a need. Number two, there are wonderful donors around the country and around the world who have generously contributed whatever they can, small amounts or large amounts, to help establish grants to help people and scientists study this, and a lot of the major advances over the last ten years are because of organizations funded by private donors to fund research. So I would say that I recently estimated there’s probably about fifteen million dollars in research that has been given through generous donors over the last five to ten years. That’s a wonderful thing.
So I am thrilled with the collaborative work that I see with patients working together to try to raise funds to fight this disease or do whatever they can to help fight this disease, financial or not.
Education is very important, and I’m thrilled with the collaboration of the researchers and the academic community. Finally, I think people are working together. In fact, none of the really good research being done right now is possible without collaboration among researchers, so I collaborate with researchers around the country who are really top-notch investigators, as do many of the other research centers around the country. So it’s a good time.
Cindy Kennedy: I get that, and I’m so thankful that you’re part of that push to make change, to find alternatives, and I’m really thrilled that you are encouraging people to be open-minded and think of other options, because there are other options that can be very helpful, like homeopathy and naturopaths and acupuncture chiropractic. There is a lot of other areas that can be very helpful. So again, I want to thank you. This has been a great interview and I’m sure this is going to give a lot of information to people who were not really aware of all this good research that’s going on. So again, thank you. This has been Dr. Brian Fallon, and I hope you have a great day.

Dr. Fallon: Okay. Thank you, Cindy. This has been so much fun, and I really appreciate what you’re doing for everyone.

Cindy Kennedy: Oh, I thank you so much.
Well, everyone out there, this is Cindy Kennedy again, and I have been talking to Dr. Brian Fallon, and you can find all the information that he gave us about his book and also about becoming a test subject. We’ll have it at the bottom of his bio. Again, come back and listen to more episodes. We are here for you. We are trying to give you more education and help you be more optimistic for the future. And also, please go onto my website, W-W-W-Dot-Living-With-Lyme-Dot-U-S, and subscribe to our podcast so that you stay informed. Have a great day everybody, make it your best.