Transcription of Lyme Disease #135
Dr. Lisa: This is Dr. Lisa Belisle, and you are listening to the Dr. Lisa Radio Hour and Podcast, show number 135, “Lyme Disease,” airing for the first time on Sunday, April 13th, 2014. Although healthcare providers have known about Lyme disease for several decades, we continue to be perplexed by this problem. Lyme disease, spread through the bite of a deer tick, has proven to be much more than a simple bullseye rash.
Today, we explore this issue with artists, Anita Roelz and Pam Creamer, who have become patient advocates through their own personal experience with Lyme disease, and this naturopathic physician, Kristen McElveen, who is grappling with the questions of Lyme in her medical practice. This is an interesting show for us because we had hoped to come away with more answers, but at least we’re asking the questions. We hope that in hearing the questions, you might find some information for your own life. Thank you for joining us.
Lyme disease is a problem that doctors and other healthcare providers have been struggling with for years now, and something that we don’t quite understand. We thought, today, it would be helpful to bring a couple of people into the studio who understand Lyme disease in a way that I, as a physician, can’t because I’ve never had this. These are individuals who are very active in the arts community, and one of them is one I know well. Having made the earrings I’m currently wearing, this is Anita Roelz. She is a metal smith and jewelry maker at Circle Stone Designs. Anita has been a caretaker and advocate for a cure of Lyme disease since her partner, Pamela, was diagnosed with Lyme disease 5 years ago. Thanks for coming in, Anita.
Anita: Thanks for having me.
Dr. Lisa: We’re very fortunate to have Pam Creamer also in the studio with us. Pam is a lifelong artist who has created work and painted murals all over the country. Pam was the primary breadwinner in her home for years until her onset of Lyme disease in 2009, which immured her ability to paint and carry on with life as it was before. Pam is under the care of one of the top Lyme doctors in the country, Dr. Richard Horowitz in New York. I know that this took a little bit of effort to get in today, so I really appreciate your being with us as well.
Pamela: Thank you.
Dr. Lisa: This has been a journey for you, 2009. That’s almost 5 years ago now. It’s been an uncertain journey.
Pamela: From the beginning, yeah.
Dr. Lisa: From the beginning.
Pamela: From the beginning, yes.
Dr. Lisa: Lyme disease has gotten a lot of attention. As a primary care doctor, I was always, “If you have a patient who comes in, they’ve been bitten by a tick, you give them antibiotics to make sure they don’t get Lyme disease. If they get a bullseye rash, then you do this.” But, it’s not as simple as that. It’s not as simple as that at all, and we’re finding that the long-term ramifications of Lyme disease are severe and that we don’t really know how to deal with them. Let’s talk about your story, Pam, and how this all started.
Pamela: The first thing that happened to me was my knee went out when I was working. I just shook it off as being the age I am and kept working. The next thing, I had elbow pain and wrist pain, and it all just kind of fell apart within a week of all of it happening. I think my immune system crashed. I went to see an orthopedist for me knee, and then it got worse neurologically. They put me on a high dose of ibuprofen, which gave me an ulcer and which crashed my immune system more. From there, it’s just been a struggle. The year or two or oral treatment, ended up with brain lesions as the infection went to my brain. It attacked my lungs, so I only have 62% capacity of that. So, then doctor to doctor to doctor.
Dr. Lisa: Anita will post on Facebook and actually post pictures of beautiful grandchildren and lovely family members, but often will post pictures of IVs and medical therapy and things that you partake of on an ongoing basis.
Pamela: I was on IV treatment for a year. I’m happy to say that it stopped the progression of my brain lesions. I still have my brain lesions, but they worked. It worked. It was a hard journey for a year, for sure.
Dr. Lisa: So, Anita, what was your experience with this?
Anita: I think that everything that Pam explained about the onset of becoming ill so quickly, and struggling to try to find answers from doctors that were struggling themselves with finding answers, and doing the diagnostics, and trying to quickly discern what was happening. It tumbled very quickly and in an extremely short period of time. As Pam said, it was basically an immune system breakdown.
So, we really … When we look at the terms of how long Pam has been treated for this 5-year period of time, really we probably think that she’s been infected for much longer and that’s the reason for the seriousness of the onset of the infection. I do definitely think that the IV therapy probably kept Pam out of a wheelchair because from a neurological standpoint, the symptoms were becoming very rapidly difficult for her. That was extremely frightening.
I think that it was unfortunate that we felt that we had to leave the state in order to find a specialist that was able to provide the IV antibiotic therapy. I feel it’s unfortunate that doctors are not able to treat the way that they should be able to treat and diagnose the way they should be able to diagnose in the state of Maine. It’s frustrating for patients.
So, I think our journey has been interesting and very educational. We’ve also learned that becoming your own advocate and informing yourself in situations like these are very, very important. So, I think, all in all, the journey has been difficult, but I feel as though we’ve made headway and improvements in Pam’s life had we not been as active in her treatment.
Dr. Lisa: So, the thought is that at some point way before 2009, you were bitten by a tick; probably didn’t even notice it; didn’t notice [inaudible 00:08:01] …
[crosstalk 00:08:01]
Pamela: [Inaudible 00:08:01] the rash.
Dr. Lisa: Never got the rash and never had the flu-like illness. You really don’t know.
Pamela: Right. I had a couple flus, but you think you have the flu and maybe you don’t think anything of it.
Anita: I think that there were … When we look back on symptoms over a 10-year period prior to the onset of the major illness part of it, there were a lot of symptoms that we, as women or people, would shrug off. Pam being a muralist and being as active as we were, hikers, climbing, scaffolding, setting up ladders, working on 12-foot ladders for 8 or 10 hours a day, travelling 2 hours in a car … all of these things. Your legs hurt. Your bottoms of your feet hurt. Your shins hurt. The comments were always, “I think I need new boots.” But, now when we dial it back and look at the symptom list, we realize that there are a whole list of symptoms that were really indicators that there was something wrong, but the whole body system had not crashed. There were just symptomatic indicators.
Had we probably paid a little more attention to the symptomatic indicators, earlier treatment might have prevented that large onset of symptoms back in 2009. But, there’s no way that anyone would’ve diagnosed it or that we really could have been able to say, “Oh, yes, this is Lyme,” because there weren’t enough to connect. I think there’s so many uncertainties, so I think that’s what’s difficult about it.
Pamela: Lyme is more complicated than just Lyme. There’s many, many co-infections that you get with it, so I have 5 other infections that I test positive for that we’re fighting. So, Dr. Horowitz has just wrote a book, and the main thing is that he calls it MSID, which is a multi-chronic infection of many infections that your body’s dealing with. So, he’s treating me for 4 different infections.
Dr. Lisa: There’s often a reaction. Once you start antibiotics, you actually can get a reaction after the antibiotics have started, which can be almost worse than the symptoms that you have initially.
Pamela: Yes. Treatment is very difficult and very aggressive.
Dr. Lisa: I can’t help but put myself in a place of your primary care doctor, whomever you saw in 2009, and think, “You know, if somebody comes in to see me with knee pain, how would I deal with this?” You’re right. I mean, I think probably sending you to see the orthopedic doctor made sense. Even as Anita was saying, you had all of these symptoms, but I don’t even know that as a primary care doctor, I would’ve known to go in the direction of Lyme. That’s what is so confusing to me.
Pamela: His book was really a great book. He talks about checklists of migratory joint pain, sore throat, swollen glands, all of this stuff that just functions through your body daily. It’s a list, and he has a great list for doctors to use to diagnose.
Anita: Yeah, he’s a leading research.
Dr. Lisa: This is Dr. Horowitz you’re talking about?
Pamela: Yeah. Yeah, and his book is … I have his information.
Anita: The name of Dr. Horowitz’s book is Why Can’t I Get Better?: Solving the Mystery of Lyme and Chronic Disease. I think, speaking to you as a primary care physician and speaking to the ability to diagnose Lyme or patients with chronic illnesses, I think that the face of the medical community, in order to acknowledge what’s happening with this kind of systemic disease that has so many co-infections and so many, I would have to say, morphs of symptoms, it’s clearly almost impossible for your average doctor to diagnose this at the onset unless someone has a classic rash symptom or a very classic symptom.
I think that what Lyme patients wish is that there was more acceptance that that course of a 30-day or a 60-day antibiotic immediately would probably prevent something happening in the long-term chronic pathway. But, that would also create a situation where, as you had described, where you would get the additional symptoms or increased symptoms because now you would be treating an active infection. So, I think it would be pretty apparent, quickly, as to what you were dealing with.
Primary care physicians are tasked with trying to find a specialist to help people sort out their issues. Lyme is a chronic, systemic issue that the only specialists that really can treat it is a Lyme aware specialist. So, I feel that if we can’t educate the primary care community about Lyme, that frontline can’t get the patient to the right doctor. So, then there’s doctor 9, 10, 11 doctors later of people who are not aware, or haven’t seen the symptoms, or are unable to treat because their hands are tied by the medical community, the legal community.
Then, you have a patient that ends up costing the medical insurance industry an awful lot more money, and it’s a lifelong illness. Ask Pam. Social Security Disability, now reliant on other ways of making income because she’s unable to function. So, it needs to start from the beginning, and I’m unsure of how we can perpetuate or help to perpetuate that kind of change.
Dr. Lisa: Were there doctors along the way who were more helpful? Were there things that people said to you or the ways that people approached you? What were some of the good things that if you’re talking to a primary care doctor like me, what would have been useful? What has been useful to you?
Anita: I think the primary care community in Pam’s case, and this isn’t indicative of everyone’s case, failed 2 times. It was when she saw a couple of the specialists that were quite removed from diagnosing this, a gastrointestinal doctor and actually an OB/GYN that actually were very sympathetic and a little more knowledgeable and quite a bit more supportive. Yet, they were not doctors that would have treated Lyme or been active in the Lyme community.
I think the other doctors that … specialists that Pam encountered and that I was a fierce advocate for her to see were not able to acknowledge any of what was happening or offer any kind of help. That was the frustrating part. It’s difficult to separate, when you’re so ill, a doctor that seems unwilling to help you and the fact that the legal community and the medical community has created a situation that makes it unable for them to help you. So, it’s not a situation of personal choice. It’s a situation of training, and they’re tasked with what their specialist situation is.
Pamela: The testing’s very inaccurate.
Anita: That’s the key. [Inaudible 00:16:06]
[crosstalk 00:16:06]
Dr. Lisa: That’s one of the things that I was just thinking is I test patients for Lyme all the time, and it doesn’t necessarily come out positive.
Pamela: You could flip a coin. That’s how accurate it is.
Dr. Lisa: Yeah. So, then we’re left with, “Okay. Well, you don’t test positive for this problem, and what are you …”
Pamela: But, is that true?
Dr. Lisa: Right. But, is it true?
Anita: That’s right.
Pamela: That’s the problem. We need research.
Dr. Lisa: Well, okay. So, that’s another piece is …
Pamela: Major research. If you had accurate Lyme testing, then treatment would happen. I mean, even the co-infections, they have inaccurate … I mean, I’ve tested positive for 3 things, but I haven’t tested positive for other stuff and I know I have it.
Anita: It’s the clinical diagnosis situation. Again, the traditional health practitioner doesn’t really look to the clinical diagnosis. It’s when you get into the alternative community. I think they’re trained to look at the whole body. In the way that they’re taught, I think they’re more willing to look at a clinical diagnosis. But, as you said, the testing is totally inaccurate, which ties a practitioner’s hands. I mean, it makes you have to, as a doctor, look outside the realm of possibility.
From an analytical standpoint, I don’t think you’re taught that in school. You’re taught “testing and treatment.” Lyme doesn’t fit within those confines, and I think that’s why we’re looking at the quantity of people that are ill and so chronically ill. It’s not necessarily anyone’s fault, as a whole. It’s an entire medical community that needs to be listening to the alert that’s being sounded in an epidemic way, and that this is going to get worse and worse and worse … and already has. I guess it needs to start with the training, with education and research.
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Dr. Lisa: Well, I appreciate that you understand how tied the hands of the doctors are, and I also appreciate your saying, “When you’re so sick, it’s hard to … It’s hard to comprehend whether somebody it unwilling to help you, or whether they just don’t have the resources to help you, or whether …” It’s just so complicated. You’re right, when you go in to see a doctor, and you’ve gone in to see a doctor for the 5th time, and you don’t have a diagnosis, and you still feel really poorly … That dynamic is so fraught with problems just from the beginning. So, I appreciate that you’re really trying to see it from a bigger perspective. But, at the same time, you have to treat this person in your life who is your partner, who’s the person that you have to care most about. It’s a tricky thing.
Anita: It’s a very tricky thing. It’s difficult. It’s been a very frustrating path. I think that it’s difficult not to be angry. You’re angry at the whole situation, so you’re looking for a place to put the anger. A lot of times, when someone is not willing to treat or not actually willing to open their heart or their mind to the possibility of the situation, that you become very frustrated. At that point, that doctor doesn’t become human to you. That doctor becomes a part of a medical community that basically is pumping out a robot that could … a computer that could diagnosis as opposed to a compassionate human.
So, when you asked the question about the number of doctors that were supportive, that’s where that scale was tipped. There weren’t many doctors that were supportive. Again, I think it comes from them not being educated or their hands being tied, and I understand that.
Dr. Lisa: Well, it is … As you were talking, I’m thinking about the term “gatekeeper,” which is something that was applied to primary care doctors probably about 10, 15 years ago. Instead of like a gatekeeper, the gate just seems closed. We’re sort of … We are tasked with keeping people beyond where we are. It’s a very challenging thing, and I think that Lyme has been called “the new AIDS.”
Pamela: There’s more cases of Lyme disease than there is HIV in the country right now.
Dr. Lisa: We also have … We know that HIV is something that, initially, people died immediately from. Now, they don’t. So, now it becomes a chronic disease; not unlike cancer, not unlike diabetes, not unlike heart disease. But, where does that leave people like you, Pam, who don’t have a good …
Anita: [You don’t have a cure right now 00:23:46].
Pamela: No research. I pray for research.
Anita: I think the issue, in dealing with Pam’s illness as it stands right now, is that we’re looking at a chronically ill patient whose best hopes for a normal life is a new normal. I think that most chronically ill Lyme patients, although they hope for being completely better, really just want to keep a whole host of other chronic illnesses at bay because their immune system has been under such siege.
When Lyme isn’t treated, initially, as quickly as it could be and the manifestations of all of the chronic illness already start to happen, you … There are certain parts of your body system, and you would know as a doctor, that don’t regenerate themselves, that don’t go away. Brain lesions do not go away. Neurological problems stay. You can go through, which Pam will be at some point, neuropsychology in order to learn and create new brain pathways to learning.
She’s very fortunate that she hasn’t lost her creative ability. However, her physical stamina and ability to stand and paint has been taken from her. I know she wishes, every day, that it would come back, and I do see her painting again; not murals, not standing on scaffolding. But, then again, we’re not getting any younger either, so maybe that’s a transition of life as well.
So, I think from a chronic standpoint, we do the best we can to manage to get back to what is a new normal. I think we have many friends, in the Lyme community, that are trying to get out of wheelchairs, that have heart conditions. I think that the general public isn’t aware the depth of how this can systematically age and destroy your body.
Dr. Lisa: Well, I’m very sorry that this has been a struggle. I can’t help but, as a doctor and as a human being, just feel the helplessness and know that there’s so far that we have to go on all of this. But, I also appreciate your taking the time and sharing your story because I think that it’s the stories that, when we get them out there, will be leading to the research and will be leading to doctors changing the way that they practice medicine. The more stories, the more people who are willing to share their experience, I think the better off we’re going to be with all of this. So, I give you credit. This is not an easy lot that you’ve drawn, and you’re both …
Anita: Nope.
Dr. Lisa: I can see it’s been a struggle, but I appreciate your really king of sticking it out and doing what you’ve been doing as artists and, I guess, Lyme disease warriors at this point. We’ve been speaking with Anita Roelz and Pam Creamer about their experience with Lyme disease and about their art. How do people find out about your art?
Anita: I have a website, circlestonedesigns.com. I have a very active Facebook page, Circle Stone Designs. I use social media. Pam actually has her own Etsy site.
Pamela: Mm-hmm (affirmative). I do. I’m sketching from my chair now, which is good … good for the brain.
Anita: The name is …
Pamela: Pamela Creamer Artist.
Anita: So, we’ve maintained the ability to move ourselves forward. So, you’ll find my work here and there, sprinkled up and down the coast. I’m active in doing craft fairs and shows.
Dr. Lisa: I’m very glad that I had the chance to spend time with both of you today. I wish you all the best on your journey, and I thank you for sharing your story.
Pamela: Thank you. Thank you for doing it for the Lyme community.
Anita: Thank you. We really appreciate it. I think that the more doctors and the more people that are aware that early diagnosis and treatment is the key.
Dr. Lisa: As a physician and small business owner, I rely on Marci Booth, from Booth Maine, to help me with my own business and to help me live my own life fully. Here are a few thoughts from Marci.
Marci: Sometimes, I get scared. While it’s difficult to admit to anyone, much less myself, there are times when what lies before me stops me in my tracks and makes me feel that I can’t go on. That’s when I know I have to dig deep, take a deep breath, step outside my comfort zone, and move ahead. Each time I do that, I grow and learn something new about myself and what it means to not be daunted by fear of the unknown. I talk of this often with my clients by helping them understand that while some decisions can be scary and make you feel uncomfortable, none should frighten you into an action. That only limits progress. They should be seen as growth opportunities. A mantra we use at our offices at Booth is “power through.” So, if something is holding you back today, my advice to you is “power through.”
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Dr. Lisa: There are many things that, as a conventional physician, I still struggle with, so I’m happy to have the chance to speak with people who are trained in a slightly different way, including naturopathic doctors. Many of my good friends in the medical community are naturopathic doctors. Today, we have with us Kristen McElveen, who is a naturopathic doctor; who has been in private practice in Springvale since 2009; who focuses chronic illness, which often includes Lyme disease and other tick-born illnesses. Kristen, thanks so much for coming in today.
Kristen: Thank you so much for having me.
Dr. Lisa: I really love what naturopathic medicine, sort of the premise behind it and the science behind it. I think people might be surprised with just how focused on the molecular aspects of medicine, naturopathic medicine can be.
Kristen: Absolutely. Yeah, I think that that’s a big part of why I moved to Maine, actually, was to sort of … There’s a lot of mis-education about us being just sort of the people who tell you to go out in the woods and eat nuts and berries. We do go to actual naturopathic medical schools, which a lot of people don’t understand the first 2 years being very similar to the school that you went to. We just come at it from a different perspective, and we treat the whole.
Instead of learning all of the in-depth surgeries and things like that, we learn more of the natural therapies that have been done for hundreds or thousands of years. They still have obviously quite a bit of … quite an effect on people’s health nowadays. So, yeah, it’s been great. I did struggle, though, choosing between allopathic and naturopathic medicine.
Dr. Lisa: Well, tell me about that.
Kristen: So, well, if I had to do it again and knew I was going to come to Maine, I think that I would’ve gone to allopathic medical school first, and then gotten my ND degree. In Oregon, it’s very different. We’re primary care physicians. We work in hospitals. We work in big clinics. We’re covered by all of the insurance companies, even Medicaid.
Out here, it’s very, very different. We don’t have insurance coverage yet, but that’s coming hopefully. We’re all pretty much hanging our own shingle. I miss that team … that team effort, and I miss working with people, which is why I love meeting people like you, where I can network and get that sense of community back because I do miss that. Out here, it’s just not as common to see a naturopath. Whereas in Portland, Oregon, there’s a naturopath on every corner, which may be a little too many naturopaths.
Dr. Lisa: Well, so, it’s an interesting opportunity for you. You’re kind of doing …
Kristen: Absolutely. That’s why I came out here.
[crosstalk 00:33:23]
Dr. Lisa: [Inaudible 00:33:23].
Kristen: Yeah. I wanted to be part of the movement, which is why I came to Maine. I love it, and I love being part of that movement. But, sometimes, you know when that person is sitting in front of you, and they’re so sick, and you just want to give them that one medication that I used to be able to prescribe, and now I can’t prescribe it? It’s frustrating. It’s frustrating.
Dr. Lisa: That must be quite a significant part of your population if you like to focus on chronic disease and diseases like Lyme.
Kristen: Yeah.
Dr. Lisa: You went in the direction of things that were complex.
Kristen: Yeah, I know.
Dr. Lisa: You’re kind of inviting troubles into your practice.
Kristen: Why? Why did I do that?
Dr. Lisa: But, why did you do that? Because you could’ve done something easier.
Kristen: I could’ve. I love a puzzle. I love a puzzle. I love being part of that team with the patient, where you’re figuring things out. That’s ultimately what drew me to naturopathic medicine because it’s so focused on them. It’s not focused on the symptoms. I always joke because people always … The most common question I get is, “What can I take for this?” They see something on Dr. Oz or hear something from a friend. “What can I take naturally for this?”
Naturopathic medicine is a totally different paradigm because there is no, “What do I take for this?” It’s, “Why do you have that? Let’s fix that because if we fix that, you won’t have the symptom.” So, and what I give one person for eczema or acne or hormone issues are going to be … is going to be a totally protocol than what I give another person because it’s about the person. It’s not about the symptoms. That’s when it becomes even more complex with Lyme because it’s such a complex illness, and there is no one protocol. That’s why I think people struggle with it.
Dr. Lisa: Well, this is what I have noticed is we started with Lyme being the bullseye rash disease.
Kristen: Right.
Dr. Lisa: This is, “If you have a rash and there was a tick, you have Lyme. You get antibiotics.”
Kristen: Yeah.
Dr. Lisa: But, now we know that it impacts the heart. It impacts the brain. It impacts the entire nervous system.
Kristen: Every system.
Dr. Lisa: Every system, right.
Kristen: Every system; “the great mimicker,” they call it, just like celiac disease.
Dr. Lisa: So, that must make it challenging for you to try to figure out why somebody has it in their nervous system and not their heart.
Kristen: Right.
Dr. Lisa: How do you parse through that?
Kristen: Whenever I get overwhelmed, I think of one of my mentors, Dr. Dick Tom. He’s one of the forefathers, I call him, of naturopathic medicine. He’s one of the big professors at NCNM, where I graduated from in Oregon. He … I just take a deep breath and I think of him saying, “Your patient is an onion, and you’ve got to take it layer by layer.” Especially when it comes to Lyme, that’s exactly what you have to do. As much as you want to give somebody pain relief … Of course, [inaudible 00:36:24] of care, there’s definitely a time and place for that, and I’m all for it in that case.
But, that’s the big struggle with chronic illness, especially with Lyme. When people are having neurological symptoms, it’s scary. When people are having heart issues, it’s scary. That’s one of the hard parts because that education piece, in the allopathic community, is what I want to help build because I feel like there’s so much stigma around Lyme, especially when it comes to specialists. I can’t do it all. I can’t check out somebody’s heart. That’s not my specialty.
I can hear if they have a murmur. I can hear if … I basically have a family physician’s focus, where I know a little bit about a lot of things, but I don’t have a … I’m not a specialist, so I need to be able to send my patients to a cardiologist, to a neurologist, to a rheumatologist just to make sure because I’m also not one of those people that sees Lyme everywhere. Although, ask me that again in another couple years.
But, it’s just going down the checklist. Obviously, if people aren’t feeling well and you think you have a diagnosis, but it doesn’t quite fit and you treat them for it, but they’re not getting better, we need to look further. I think that’s where a lot of people get stuck with Lyme because their doctor either doesn’t agree that there’s chronic Lyme or it’s just not something they thought to look for because of the stigma around it.
So, [inaudible 00:38:04] to years later when they’re in my office, and you really have to take … I mean, that’s why my first appointment is 2 hours long. You have to get a good history. You have to get a good physical exam. Labs are just part of the picture. I’m not one of those people that sees a negative lab and thinks, “Oh, you’re do- … It’s not Lyme,” because as we know, the tests are not reliable.
Dr. Lisa: Well, and that is … That proves to be a problem for people …
Kristen: Absolutely.
Dr. Lisa: … who are trying to practice traditional medicine.
Kristen: Absolutely.
Dr. Lisa: If I … I’m trained in acupuncture and Chinese medicine, and that gives me … If I am using that mindset, I have more time, and I’m able to look more towards the problem …
[crosstalk 00:38:46]
Kristen: [Inaudible 00:38:46], mm-hmm (affirmative).
Dr. Lisa: … and the whole. But, there are times when I’m called to see a patient in 15 minutes.
Kristen: Right.
Dr. Lisa: I need to offer them something, and often that’s a lab test. With Lyme, it is really complicated because the …
Kristen: It is.
Dr. Lisa: … lab tests that we have, they may come out negative, but it doesn’t mean the person doesn’t have Lyme.
Kristen: Exactly. I mean, you think of … Think of just basic immunology. If somebody’s really sick, especially if they’ve been sick for so long, their immune system is not going to be up-to-snuff enough to produce antibodies. You’re not going to … It’s not going to be producing as many antibodies as it was months ago or even years ago. Those antibodies die down anyway. So, I just feel like … I feel like the focus has gotten so lab based, and we need to remind ourselves that, again, that’s just part of the picture. We are good diagnosticians if we just have the time to put all the pieces together.
Really, there is no lab that is 100%, other than a culture, for anything pretty much. It’s part of the picture. It’s a snapshot of the blood taken out of the arm or wherever at that moment. It depends on what they ate the night before. Do they have a cold? I mean, all doctors think of those things when they’re running any kind of bloodwork. Certain things are going to affect that.
But, with our screening test, which is typically the ELISA for Lyme … With our screening test being, at most, 68% sensitive. I don’t think any screening test should be that … have that low of an accuracy rate. So, that’s really where it becomes, “Why don’t we look at another test? Why don’t we look at a culmination of tests?”
Dr. Lisa: So, what would that be in your practice?
Kristen: Well, I really try to focus on getting the most information I can. With me, it’s hard because I’m not covered by insurance, and patients are paying out-of-pocket. I do use a western blot when I can, with PCR is great. The more information, the better. I rarely use the ELISA because I just frankly think it’s useless. Unless you’re really just wanting to screen somebody and that’s our only option, absolutely I will use it.
But, again, we have to remember western blot is showing exposure. It’s not showing active infection. So, if they have a positive western blot, that doesn’t mean that they have Lyme. It doesn’t mean that they have an active infection. I think that’s where some people also get caught up in it because maybe it’s not Lyme. Maybe it really is fibromyalgia. Yes, you have had an exposure to Lyme, but that’s where it really becomes the puzzle.
Dr. Lisa: The goal of the Dr. Lisa Radio Hour is to help make connections between the health of the individual and the health of the community. The goal of Ted Carter Inspired Landscapes is to deepen our appreciation for the natural world. Here to speak with us today is Ted Carter.
Ted: One of my friends, [Ken Jaynes 00:42:02], is … He was a surgeon for his entire career and adult life until he retired. He really, at heart, is a naturalist and does beautiful photography of nature and all of these beautiful nature settings. They went to Africa and shot some amazing shots in Africa. They … He goes out into the wild and takes pictures of the birds. I think what happens is that I’m noticing people are really, as they are retiring or getting to retiring age, and I’m working with many, many people in that bracket, that they really are starting to find themselves in an area that is completely removed and different from their life experience up until this point.
So, the landscape, I think, talks and speaks to them in a special way and helps to nurture that and steward that activity. What I really endeavor to do is to try to create that bridge between what their old life was and what their new life could become or is becoming. We’re always in the state of “becoming.” But, I think that the built landscape gives you a place to really meditate and seriously think about what you’re going to do for the rest of your life.
I’m Ted Carter, and if you’d like to contact me, I can be reached at tedcarterdesign.com.
Dr. Lisa: The Dr. Lisa Radio Hour and Podcast understands the importance of the health of the body, mind, and spirit. Here to talk about the health of the body is Jim Greatorex of Premier Sports Health, a division of Black Bear Medical.
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Dr. Lisa: So, what are some of the different ways that patients have come to you and have had Lyme? What are some of the experiences you’ve had?
Kristen: Well, in the beginning, when I first moved out here, I was very resistant to treating Lyme. I was like, “Oh, I’m not going to treat that.” But, you can’t control what walks in your door. The first few cases I treated luckily were pretty straightforward. They were chronic cases. I hate to use that terminology, but they were cases where they were infected likely years ago. It wasn’t a recent tick bite or anything like that, but just kind of, again, things that … fatigue, and weird night sweats, and things that we weren’t really finding a cause for.
Going down the line of differentials, I thought, “Well, let’s … We live in Maine. These patients are outside enjoying this beautiful place that we live. Let’s test it.” Actually, my first 2 patients were a couple, and that’s what got me thinking about the potential for sexual transmission, which is now what’s coming out in the research too. One of them had an actual history of a tick bite, and the other one didn’t. That doesn’t mean it was sexually transmitted, but that’s definitely something we’re looking at.
Dr. Lisa: So, that’s interesting. I hadn’t … Maybe I live under a rock, I guess. I hadn’t realized …
Kristen: No, you don’t. It really is very, very new. But, it’s a spirochete, just like syphilis. So, why wouldn’t it be? Why wouldn’t it be? It certainly isn’t common. Otherwise, I think we would see it a lot more often. But, it’s just … It’s interesting to me, as a scientist and as a puzzle person, that I have seen couples where only one had a history of a tick bite. Now, keep in mind, up to 50% of people don’t even recall a tick bite who have Lyme. So, that doesn’t necessarily mean it was sexually transmitted, but it’s something to keep in mind.
There was a study … Gosh. But, I think it might’ve been Science Daily. They … It was in the last month or two that they released the study that it was found in fluids, and the spirochetes were found in fluids. Do we know how contagious it is? Again, I think that if it were more common, we would definitely see that.
Dr. Lisa: So, you’ve seen patients that have come in as a couple before, and both of them have had Lyme. What are some of the symptoms that people have when they walk through your doors?
Kristen: Usually, fatigue is the big one, and a lot of memory issues, a lack of focus. Sometimes, it almost borders on ADD, ADHD. They can have joint pain. That’s also very common, especially migrating joint pain where it’s not the same joint every day. General soreness, which again is why fibromyalgia is one of the common misdiagnoses, and fevers or night sweats. Those are probably the big ones that set off my red flags, and those are the ones that I definitely hear, in the history, of these people that have been trying to figure out what’s wrong with them for years.
Then, they see me, and they come and see me, and we go down the line. We check adrenals first; make sure their hormones are up-to-snuff; making sure they’re getting enough magnesium, which is lacking in our soil these days and is very important for muscle health and heart health. I test for it. I’ll do a western blot, with a PCR hopefully.
There’s also a new test that tests T cell response. It’s from Pharmasan Labs, which is the lab in Wisconsin. It’s really new. It’s not CDC approved. It’s not one of the, “If it’s positive, it’s reported.” But, I’ve been using it. It shows active T cell response, and therefore active infection. So, I have been using that when I can; again, when the patient’s able to afford it because it has … I’ve used it probably 5 or 6 times now, and it has reflected what I’ve seen clinically, and it’s great to have something to guide you when you’re going through treatment because it does take time. I don’t always use antibiotics. Luckily, those first few cases I got did amazing with herbal therapy and homeopathy. They, to this day, have not had symptoms return.
Dr. Lisa: So, did you also treat these patients with antibiotics? Or, did you …
Kristen: Not the first few. When I first moved out here, I did what I do best. That, for me, is a specific form of homeopathy called biotherapeutic drainage. It focuses on a cellular level, and you’re supporting each organ system separately. That’s just what I love, what I do. That’s what I used, and it was successful. Then, I started working with more doctors who treat Lyme, going to the ILADS conferences, and getting scared. “Oh, gosh. I really should be using antibiotics.” Even my own colleagues were saying, “You need to be using antibiotics.” I was like, “But, they got better.”
But, then I got really scared, and I started using more antibiotics. Then, the people on antibiotics started just plateauing, and I was still doing the other naturopathic stuff because you can’t … You can’t just treat with antibiotics. You’ve got to support the detox pathways. You’ve got to support methylation. You’ve got to … There are so many other parts to it than just the infection. I’ve never met anyone who successfully has treated Lyme just with antibiotics. So, I got kind of caught up in that.
Now, the last year or so, I’ve really seen people just plateau on that and get toxic buildup, and it just becomes what I call this “polypharmacy” of them needing more and more drugs, pain medication for the pain, and nerve med- … like gabapentin for the nerve pain. It’s just like all of a sudden, my patient’s on 12 different, really intense medications, and we’re not making any progress. So, I’m kind of revamping my original protocol. I definitely think there’s a time and place for antibiotics if it’s in the nervous system. If the patient is really amino-compromised or they’ve got other morbidities going on like diabetes, heart disease, things like that, we definitely want to be aggressive. But, you can also be aggressive with herbal therapy if you do it correctly.
Dr. Lisa: So, if somebody is interested in, say, they have a Western doctor and they also come to see you, and say the Western doctor is using antibiotics, what types of homeopathic remedies and herbs are effective with Lyme disease?
Kristen: Again, it depends on the person. It depends on what they need specifically, and that’s one reason why I love homeopathy so much because it doesn’t interact with medications. I just … I go by what the patient tells me, what their body tells me, what their story tells me. A lot of it’s about the gut. We’re learning more and more about the microbiome, and of course if you have somebody on long-term antibiotics, that gut flora is going to be really … You need a lot of support. As naturopaths, we’re kind of known as the gastroenterologists of the field sort of … literally the field.
But, I’m always focusing on the gut, and I’m focusing on what I can do to … anything I can do to help the antibiotics, help the medications be more effective. So, helping their detox pathways and helping their bodies generally get healthier and reduce as much inflammation that we can in other ways, like diet, is huge. That can help alleviate a lot of the side effects from medications. It can help … and it can help the drugs work better because you’re reducing that inflammation, and the body’s able to get that medication to where it needs to go.
So, I work with a lot of doctors who they kind of handle the antibiotics and the other meds, and then they send them to me for the naturopathic piece. I’m a big diet person. I’m all about … That’s something that we all … It’s hard, but that’s something that we can control is what we’re eating, and that can have a huge effect, as you know, on our inflammatory cascade.
Dr. Lisa: How can people find out about your practice and about the work that you’re doing with Lyme and other chronic illnesses?
Kristen: Well, I have a website, and it’s … My practice is called Bare Medicine, which is Bare, as in naked, B-A-R-E. So, baremedicine.com is my website. I am also very into social media, so I’m on Facebook and Twitter. I’ve also started my new goal, which dreams are fun. But, my new goal is to somehow open a Lyme specific clinic, an integrative clinic where there are MDs, and there are naturopaths, and there are … People can come and get IV therapy, which I can’t do in Maine; come and get sauna therapy, hydrotherapy. Hopefully, we can maybe get a couple specialists to at least come in a couple times a week.
That’s really my long-term goal, and so I’ve kind of started a Facebook page and a Twitter account for Lyme Institute of New England, which is what I’d like to call it. I don’t know that there’s a place like that. I haven’t found one, and certainly my patients haven’t found one. So, that’s really sort of my focus right now is trying to … Because I’m a doctor, and I started a … I hung my little shingle, and I started a little practice on my own.
But, starting a clinic is a whole different piece, so I’m really trying to get out there, and educate, and hopefully network and find people who are likeminded to provide a place where people can come to one place because these people are exhausted. The illness becomes their life. It’s like cancer. They have to come see me one day. Then, they go see their primary care the next day. Then, they go see their acupuncturist for the pain management. Then, they have to go to the gym and get sauna. It’s just, ugh, wouldn’t it be nice for them to come to one place and not have this condition take over their life. So, that’s my goal.
Dr. Lisa: Well, I suspect you’re going to be successful because there is definitely a need, and it sounds like you’re very thoughtful about all of this.
Kristen: I’m hopeful. I’m hopeful.
Dr. Lisa: Well, I encourage people to go to your website to learn more about you and the work that you’re doing. I appreciate the time that you spent with us today and also the work that you’re doing with Lyme in the state of Maine because it is a puzzle.
Kristen: It is.
Dr. Lisa: It’s something that we doctors, naturopathic, allopathic, osteopathic …
Kristen: Everybody.
Dr. Lisa: Everybody, all of us.
Kristen: It’s just …
Dr. Lisa: We all need to have open minds and try to understand that.
Kristen: And, work together, absolutely.
Dr. Lisa: Yeah. We’ve been speaking with Dr. Kristen McElveen, a naturopathic doctor who is in private practice in Springvale, and who will be giving a talk for medical care providers on Lyme disease with Apothecary by Design in May. Thanks for coming in today.
Kristen: Thank you so much for having me.
Dr. Lisa: You have been listening to the Dr. Lisa Radio Hour and Podcast, show number 135, “Lyme Disease.” Our guests have included Anita Roelz, Pam Creamer, and Kristen McElveen. For more information on our guests and extended interviews, visit D-O-C-T-O-R Lisa.org. The Dr. Lisa Radio Hour and Podcast is downloadable for free on iTunes. For a preview of each week’s show, sign up for our e-newsletter and Like our Dr. Lisa Facebook page. Follow me on Twitter and as bountiful1 on Instagram.
We’d love to hear from you, so please let us know what you think of the Dr. Lisa Radio Hour. We welcome your suggestions for future shows. Also, let our sponsors know that you have heard about them here. We are privileged that they enable us to bring the Dr. Lisa Radio Hour to you each week. This is Dr. Lisa Belisle. I hope that you have enjoyed our Lyme disease show. Thank you for allowing me to be a part of your day. May you have a bountiful life.
Speaker 1: The Dr. Lisa Radio Hour and Podcast is made possible with the support of the following generous sponsors: Maine Magazine; Marci Booth of Booth Maine; Apothecary by Design; Premier Sports Health, a division of Black Bear Medical; Mike LePage and Beth Franklin of ReMax Heritage; Ted Carter Inspired Landscapes; Tom Shepard of Shepard Financial; Dream Kitchen Studios; Harding Lee Smith of The Rooms; and Bangor Savings Bank.
The Dr. Lisa Radio Hour and Podcast is recorded in the studio of Maine Magazine at 75 Market Street, Portland, Maine. Our executive producers are Kevin Thomas, Susan Grisanti, and Dr. Lisa Belisle. Our assistant producer is Leanne Ouimet. Audio production and original music by John C. McCain. Our online producer is Kelly Clinton. The Dr. Lisa Radio Hour and Podcast is available for download free on iTunes. See the Dr. Lisa website or Facebook page for details.