Lyme Disease #135

Pam Creamer:

Lyme is more complicated than just Lyme. There's many, many co infections that you get with it. So I have five other infections that I test positive for that we're fighting now.

Anita Roelz:

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.

Kristen McElveen:

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's so many parts to it than just the infection. I've never met anyone who successfully has treated Lyme just with antibiotics.

Dr. Lisa Belisle:

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 13, 2014. Although health care 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 Rolls and Pam Creamer, who have become patient advocates through their own personal experience with Lyme disease, and with naturopathic physician Kristin McKelvin, who is grappling with the questions of Lyme in her medical practice. This was 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.

Dr. Lisa Belisle:

Lyme disease is a problem that doctors

Dr. Lisa Belisle:

and other health care providers have been

Dr. Lisa Belisle:

struggling with for years now, and something that we don't quite understand. We thought today it would be helpful

Dr. Lisa Belisle:

to bring a couple of people into the studio who understand Lyme disease in

Dr. Lisa Belisle:

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.

Dr. Lisa Belisle:

This is Anita Rolls. She is a metalsmith and jewelry maker

Dr. Lisa Belisle:

at Circle Stone Designs.

Dr. Lisa Belisle:

Anita has been a caretaker and advocate for a cure of Lyme disease since

Dr. Lisa Belisle:

her partner Pamela was diagnosed with Lyme disease five years ago. Thanks for coming in, Anita.

Anita Roelz:

Thanks for having me.

Dr. Lisa Belisle:

And we're very fortunate to have Pam

Dr. Lisa Belisle:

Creamer also in the studio with us. Pam is a lifelong artist who has created work and painted murals all over the country.

Dr. Lisa Belisle:

Pam was a primary breadwinner in her

Dr. Lisa Belisle:

home for years until her onset of lyme disease in 2009, which hindered her ability to paint and carry on with

Dr. Lisa Belisle:

life as it was before.

Dr. Lisa Belisle:

Pam is under the care of one

Dr. Lisa Belisle:

of the top Lyme doctors in the country, Dr. Richard Horowitz in New York. And I know that this took a little bit of effort to get in today, so I really appreciate your being with us with as well.

Pam Creamer:

Thank you.

Dr. Lisa Belisle:

This has been a journey for you, 2009. That's almost five years ago now. And it's been an uncertain journey from the beginning. From the beginning.

Anita Roelz:

From the beginning, yes.

Dr. Lisa Belisle:

Lyme disease has gotten a lot of attention. And as a primary care doctor, I was always, you know, 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. 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.

Pam Creamer:

First thing that happened to me was my knee went out when I was working and I just shook it off as being the age I am and kept working. 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 my knee, and then it got worse neurologically. They put me on high dose of ibuprofen, which gave me an ulcer, which crashed my immune system more. And from there it's just been a struggle. A year or two of oral treatment ended up with brain lesions as the infection went to my brain, it attacked my lung. So I only have 62% capacity of that. It's been doctor to doctor to doctor.

Dr. Lisa Belisle:

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.

Pam Creamer:

I was in 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 Belisle:

So, Anita, what was your experience with this?

Anita Roelz:

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, doing the diagnostics and trying to quickly discern what was happening, it tumbled very quickly in an extremely short period of time. And 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 five 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 Belisle:

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 have.

Pam Creamer:

Never got the rash.

Dr. Lisa Belisle:

Never got the rash and never had the flu. Like illness, really don't know.

Pam Creamer:

Right. I had a couple flus. But you think you have the flu? I mean, you don't think anything of it.

Anita Roelz:

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 eight or 10 hours a day, traveling two hours in a car, you know, all of these things, your legs hurt, your bottoms of your feet hurt, your shins hurt. You know, 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. And 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 have diagnosed it or that we really could have been able to say, oh, yes, you know, this is Lyme, because there weren't enough to connect. And I think there's so many uncertainties. So I think that's what's difficult about it.

Pam Creamer:

Lyme is more complicated than just Lyme. There's many, many co infections that you get with it. So I have five other infections that I test positive for that we're fighting. So Dr. Horitz just wrote a book and the main thing is that he calls it msaids, where it's a multi chronic infection of many infections that your body's dealing with. So he's treating me for four different infections.

Dr. Lisa Belisle:

And 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.

Pam Creamer:

Yes, treatment is very difficult and very aggressive.

Dr. Lisa Belisle:

You know, I can't help but put myself in the place of your primary care doctor or whomever you saw in 2009 and think, somebody comes in to see me with knee pain, how would I deal with this? And you're right. I think probably sending you to see the orthopedic doctor made sense. And even as Anita is saying you had all these symptoms, but I don't even know that as a primary care doctor, I would have known to go in the direction of Lyme. That's what is so confusing to me.

Pam Creamer:

His book is really a great book. He talks about a checklist of like, migratory joint pain, sore throat, swollen glands, all this stuff that just functions through your body daily. And it's a list and he has a great list for doctors to use to diagnose. He's a leading researcher.

Dr. Lisa Belisle:

This is Dr. Horowitz you're talking about? Yeah.

Pam Creamer:

And his book is I have this information.

Anita Roelz:

The name of Dr. Horowitz's book is why Can't I get Solving the Mystery of Lyme and Chronic Disease. And 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 stuff, 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 side 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 specialist 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 front line can't get the patient to the right doctor. So then there's Dr. 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. And then you have a patient that ends up costing the medical insurance industry an awful lot more money. And it's a lifelong illness as 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 Belisle:

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 have been useful? What has been useful to you?

Anita Roelz:

I think the primary care community In Pam's case, and this isn't indicative of everyone's case, failed two times. It was when she saw a couple of the specialists that were quite removed from diagnosing this. A gastrointestinal doctor and actually an obgyn 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. And 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.

Pam Creamer:

The testing's very inaccurate. That's the key.

Dr. Lisa Belisle:

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 up positive.

Pam Creamer:

You could flip a coin. That's how accurate it is.

Dr. Lisa Belisle:

Yeah.

Dr. Lisa Belisle:

So then we're left with, okay, well, you don't test positive for this problem. And.

Pam Creamer:

But is that true?

Dr. Lisa Belisle:

Right, but is it true? That's the problem.

Pam Creamer:

We need research.

Dr. Lisa Belisle:

Well, okay, so that's another piece is major research.

Pam Creamer:

If he had accurate Lyme testing, then treatment would happen. And I mean, even the co infections, they have inaccurate. You know, I mean, I've tested positive for three things, but I haven't tested positive for other stuff. And I know I have it.

Anita Roelz:

It's the clinical diagnosis situation. And 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 and 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. And from an analytical standpoint, I don't think you're taught that in school. You're taught testing and treatment. And 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. And I guess it needs to start with the training, with education and research.

Dr. Lisa Belisle:

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Dr. Lisa Belisle:

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, you know, it's hard to. It's hard to comprehend whether somebody is unwilling to help you or whether they just don't have the resources to help you or whether, you know, it's just so complicated. And you're right. When you go in to see a doctor and you've gone in to see a doctor, you know, for the fifth time and you don't have a diagnosis and you still feel really poorly, you know, that dynamic is so fraught with problems just from the beginning. So I appreciate that you're really trying to see it from, you know, 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.

Dr. Lisa Belisle:

It's a tricky thing.

Anita Roelz:

It's a very tricky thing. It's difficult. It's been a very frustrating path, I think that difficult not to be angry. You're angry at the whole situation, so you're looking for a place to put the anger. And 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 this situation, that you become very frustrated. And 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 diagnose as opposed to a compassionate human. So when you ask the question about the number of doctors that were, you know, supportive, that's where that scale was tipped. There weren't many doctors that were supportive. And again, I think it comes from them not being educated or their hands being tied. And I understand that.

Dr. Lisa Belisle:

Well, it isn't. As you're talking, I'm thinking about the term gatekeeper, which is something that was applied to primary care Doctors probably about 10, 15 years ago. And instead of like a gatekeeper, it's, you know, the gate just seems closed. You know, we're sort of. We are tasked with, you know, keeping people beyond, you know, where we are. It's a. It's a very challenging thing. And I think that Lyme has been called the new aids there's more cases

Pam Creamer:

of Lyme disease than there is HIV in the country right now.

Dr. Lisa Belisle:

And we also have. And 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, you know, don't have a good. You don't have a cure right now?

Pam Creamer:

No research. I pray for research.

Anita Roelz:

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. And 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. And when Lyme isn't treated initially, as quickly as it could be, and the manifestations of all the chronic illness already start to happen, 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 will 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. And 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 of the depth of how this can systematically age and destroy your body.

Dr. Lisa Belisle:

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 and 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. I can see it's been a struggle, but I appreciate your really kind 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 Rawls and Pam Creamer about their experience with Lyme disease and about their art. How do people find out about your art?

Anita Roelz:

I have a website, circlestonedesigns.com I have a very active Facebook page, Circlestone Designs. I use social media. Pam actually has her own Etsy site.

Pam Creamer:

I do sketching from my chair now, which is good, good for the brain.

Anita Roelz:

And the name is Pamela Creamer, artist. 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. And I'm active in doing craft fairs and shows.

Dr. Lisa Belisle:

Well, I'm very glad that I had the chance to spend time with both of you today, and I wish you all the best on your journey. And I thank you for sharing your story.

Pam Creamer:

Thank you. Thank you for doing it for the Lyme community.

Anita Roelz:

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 Belisle:

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Dr. Lisa Belisle:

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

Dr. Lisa Belisle:

doctors and and many of my good

Dr. Lisa Belisle:

friends in the medical community are naturopathic doctors. Today we have with us Kristin McKelvin, who is a naturopathic doctor who has been in private practice in Springvale since 2009. Her focus is chronic illness, which often includes Lyme disease and other tick borne illnesses. Kristin, thanks so much for coming in today.

Kristen McElveen:

Thank you so much for having me.

Dr. Lisa Belisle:

I really love what naturopathic medicine, sort

Dr. Lisa Belisle:

of the premise behind it and the science behind it.

Dr. Lisa Belisle:

I think people might be surprised with

Dr. Lisa Belisle:

just how focused on the molecular aspects

Dr. Lisa Belisle:

of medicine naturopathic medicine can be.

Kristen McElveen:

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 miseducation about us being just sort of the people who tell you to go out in the woods and eat nuts and berries, you know, and we do go to actual naturopathic medical schools, which a lot of people don't understand. The first two years being very similar to the school that you went to. And we just come at it from a different perspective and we treat the whole and instead of learning all 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 and they still have obviously 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 Belisle:

Well, tell me about that.

Kristen McElveen:

Well, if I had to do it again and knew I was going to come to Maine, I think that I would have 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 the insurance companies, even Medicaid. And 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. And 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. And 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 Belisle:

Well, so it's an interesting opportunity for you. You're kind of doing.

Kristen McElveen:

Absolutely. That's why I came out here. Yeah. I wanted to be part of the movement, which is why I came to Maine. And 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 Belisle:

So that must be quite a significant

Dr. Lisa Belisle:

part of your population if you like to focus on chronic diseases and diseases like lime. You went in the direction of things that were complex. You're kind of inviting troubles into your practice.

Kristen McElveen:

Why did I do that?

Dr. Lisa Belisle:

But why did you do that? Because you could have done something easier.

Kristen McElveen:

You know, I could have. I love a puzzle. I love a puzzle. I love being part of that team with the patient where, you know, you're figuring things out. And that's ultimately what drew me to naturopathic medicine, because it's so focused on them, it's not focused on the symptoms. You know, I always joke because people always, you know, the most common question I get is, what can I take for this? You know, they see something on Dr. Oz or, you know, hear something from a friend. What can I take naturally for this? And 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 is going to be a totally different protocol than what I give another person. Because it's about the person. It's not about the symptoms. And that's when it becomes even more complex with Lyme, because it's such a complex illness, and there is no one protocol. And that's why I think people struggle with it.

Dr. Lisa Belisle:

Well, this is what I have noticed

Dr. Lisa Belisle:

is we started with Lyme being the bullseye rash disease. This is if you have a rash and there was a tick, you have Lyme, you get antibiotics.

Dr. Lisa Belisle:

But now we know that it impacts

Dr. Lisa Belisle:

the heart, it impacts the brain, it impacts the entire nervous system. Every system.

Kristen McElveen:

Right, every system. The great mimicker they call it, you know, just like celiac disease.

Dr. Lisa Belisle:

So that must make it challenging for

Dr. Lisa Belisle:

you to try to figure out why somebody has it in their nervous system and not their heart.

Kristen McElveen:

Right.

Dr. Lisa Belisle:

How do you parse through that?

Kristen McElveen:

You know, 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 biggest professors at ncnm, where I graduated from in Oregon. And 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. And especially when it comes to Lyme, that's exactly what you have to do. As much as you want to give somebody pain relief and, of course, palliative care, you know, 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. You know, when people are having heart issues, it's scary. And that's one of the hard parts, because the 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, and I can't do it all. You know, 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. You know, I basically have a family physician's focus where I know a little. 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. 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, you know, 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. And 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 cut to years later when they're in my office and, you know, you really have to take. I mean, that's why my first appointment is two hours long. You know, you have to get a good history, you have to get a good physical exam. Labs are just part of the picture. You know, I'm not one of those people that sees a negative lab and thinks, oh, you're done. You know, it's not Lyme, because as we know, the tests are not reliable.

Dr. Lisa Belisle:

Well, and that is, that proves to be a problem for people who are trying to practice traditional medicine. You know, absolutely. If I, you know, I'm trained in

Dr. Lisa Belisle:

acupuncture and Chinese medicine and that gives

Dr. Lisa Belisle:

me, if I am using that mindset, I have more time and I am able to look more towards the problem and the whole. But there are times when I'm called

Dr. Lisa Belisle:

to see a patient in 15 minutes

Dr. Lisa Belisle:

and I need to offer them something. And often that's a lab test.

Dr. Lisa Belisle:

And with Lyme, it is really complicated

Dr. Lisa Belisle:

because the lab test that we have, they may come out negative, but it

Dr. Lisa Belisle:

doesn't mean the person doesn't have Lyme.

Kristen McElveen:

Exactly. I mean, you 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, you know, it's not going to be producing as many antibodies as it was, you know, months ago or even years ago. And those antibodies die down anyway. So I just feel like, you know, 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. You know, 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. You know, 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, you know, all doctors think of those things when they're running any kind of blood work. 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, you know, I don't think any screening test should. Should 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 Belisle:

You know, so what would that be in your practice?

Kristen McElveen:

Well, I really try to focus on getting the most information I can with me. You know, it's hard because I'm not covered by insurance and patients are paying out of pocket. I do use 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 just 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. And I think that's where some people also get caught up in it, because maybe it's not Lyme, maybe it really is fibromyalgia. And yes, you have had an exposure to Lyme, but that's where it really becomes the puzzle.

Dr. Lisa Belisle:

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Dr. Lisa Belisle:

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Dr. Lisa Belisle:

so what are some of the different ways that patients have come to you

Dr. Lisa Belisle:

and have had Lyme?

Dr. Lisa Belisle:

What are some of the experiences you've had?

Kristen McElveen:

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. And 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, you know, 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. And going down the line of differentials, I thought, well, let's, you know, we live in Maine. These patients are outside enjoying this beautiful place that we live. Let's test it. And actually, my first two 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, you know, that's definitely something we're looking at.

Dr. Lisa Belisle:

So that's interesting. I hadn't. Maybe I live under a rock, I guess I hadn't realized.

Kristen McElveen:

No, you don't. It really is very, you know, very new. But it's a spirochete, just like syphilis. So why wouldn't it be? You know, 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. And there was a study. Gosh. But it was. I think it might have been science D. Daily. And they. It was in the last month or two that they released a study that it was found in fluids. And, you know, the spirochetes were found in fluids. Do we know how, you know, contagious it is? Again, I think that if it were more common, we would definitely see that. So.

Dr. Lisa Belisle:

So you've seen patients that have come

Dr. Lisa Belisle:

in as a couple before, and both of them have had Lyme.

Dr. Lisa Belisle:

What are some of the symptoms that

Dr. Lisa Belisle:

people have when they walk through your doors?

Kristen McElveen:

Usually fatigue is the big one. And a lot of memory issues, you know, lack of focus. Sometimes it almost borders on, you know, add, adhd. They can have joint pain. That's also very common. Especially. 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. And then they see me, and they come and see me. And, you know, 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. And, you know, I test for it. I'll do a western blot with a pcr. Hopefully. There's also a new test that test T cell response. It's from Pharmazon Labs, which is a 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. When the patient's able to afford it, because it has. I've used it probably five or six times 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, and they, to this day, have not had symptoms return.

Dr. Lisa Belisle:

So did you also treat these patients with antibiotics or did you not?

Kristen McElveen:

The first few. You know, when I first moved out here, I did what I do best, and that for me is a specific form of homeopathy called biotherapeutic drainage. It focuses on a cellular level, and you, you know, you're supporting each organ system separately. And that's just what I love, what I do. And that's what I used, and it was successful. Then I started. Started working with more doctors who treat Lyme, Going to the ILADS conferences and getting scared, you know, oh, gosh, I really should be using antibiotics. And even my own colleagues were saying, you need to be using antibiotics. And, you know, and I was like, but they got better, you know, but then I got really scared and I started using more antibiotics. And then the people on antibiotics started just plateauing. And I. I was still doing the other naturopathic stuff because you can't just treat with antibiotics. You've got to support the detox pathways, you've got to support methylation. There's 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. And now the last year or so, I've really seen people just plateau on that and get toxic buildup and it just becomes, you know, what I call this polypharmacy of them needing more and more drugs, you know, pain medication for the pain and nerve, you know, like gabapentin for the nerve pain. And it's just like all of a sudden my patient's on, you know, 12 different really intense medications and we're not making any progress. So I'm kind of revamping my original protocol. And I definitely think there's a time and place for antibiotics if it's in the nervous system, if, you know, if the patient is really immunocompromised or they've got other morbidities going on, like diabetes things, 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 Belisle:

So if somebody is interested in, 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

Dr. Lisa Belisle:

are effective with Lyme disease?

Kristen McElveen:

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. And I just, I go by what the patient tells me, you know, what their body tells me, what their story tells me. A lot of it's about the gut. You know, 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. And as naturopaths, you know, we're kind of known as the gastroenterologists of the field, sort of, you know, 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, 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 and that can help alleviate a lot of the side effects from medications and it can help the drugs work better because you're reducing that inflammation and the body's able to, you know, 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. And I'm a big diet person. I'm all about, you know, 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 Belisle:

How can people find out about your

Dr. Lisa Belisle:

practice and about the work that you're

Dr. Lisa Belisle:

doing with Lyme and other chronic illnesses?

Kristen McElveen:

Well, I have a website and my practice is called Bare medicine, which is bare as in naked B A R E. So bearmedicine.com is my website. I'm also very into social media, so I'm on Facebook and Twitter. And 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, you know, people can come and get IV therapy, which I can't do in Maine, come and get sauna therapy, hydrotherapy, hopefully, you know, 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, my focus right now is trying to, because I'm a doctor and I started, you know, I hung my little shingle, 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 like minded to provide a place where people can come to one place. Because these people are exhausted, you know, 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. You know, it's just, 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 Belisle:

Well, I suspect you're going to be

Dr. Lisa Belisle:

successful because there is definitely a need and it sounds like you're very thoughtful about all of this. I'm hopeful.

Kristen McElveen:

I'm hopeful.

Dr. Lisa Belisle:

Well, I encourage people to go to your website who 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 and the state of Maine, because it is a puzzle and it's something that we doctors, naturopathic, allopathic, osteopathic, Everybody, everybody, all of us, we all need to have open minds and try to understand that and work together.

Kristen McElveen:

Absolutely, yeah.

Dr. Lisa Belisle:

We've been speaking with Dr. Kristen McElven, a naturopathic doctor who is in private

Dr. Lisa Belisle:

practice in Springvale and who will be giving a talk for medical care providers

Dr. Lisa Belisle:

on Lyme disease through Apothecary by Design in May. Thanks for coming in today.

Kristen McElveen:

Thank you so much for having me.

Dr. Lisa Belisle:

You've been listening to the Dr. Lisa Radio Hour and podcast show number 135, Lyme disease. Our guests have included Anita Rolls, Pam creamer and Kristen McKelvin. For more information on our guests and extended interviews, visit drlisabelisle.com 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 bountiful one 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 to 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.

Dr. Lisa Belisle:

Sa.