Ep 40: Breaking Down Barriers in Lyme Disease Treatment: Expert Interview with Dr. Daniel Cameron
A Journey of Discovery: Dr. Cameron's extensive experience and unique insights offer listeners a rare glimpse into the world of treating Lyme disease. Dr. Cameron's professional journey began in geriatrics, marked by a decade of specialized training. This path presented him with a range of psychological, social, and behavioral intricacies that closely mirrored the challenges found in treating Lyme disease. He acknowledges the profound impact that being misunderstood and coping with chronic conditions have on patients' lives. Dr. Cameron's background in epidemiology allowed him to independently engage with the existing literature, avoiding dependency on centralized health organizations. As his understanding deepened, he recognized the strong alignment between the symptoms his patients were experiencing and those documented in pioneering research articles.
Early Insights and Evolving Knowledge: Dr. Cameron's journey into Lyme disease swiftly immersed him in the realm of neurological issues. Over time, the phenomena he observed in his patients found their place in published works. Dr. Legian, alongside other pioneers like Dr. Steere, documented chronic neurologic Lyme disease. The symptoms that had perplexed Dr. Cameron – brain fog, fatigue, lightheadedness, and dizziness – were now explicitly acknowledged in the medical literature. The documented cases included individuals who had suffered for up to 14 years, many of whom had undergone unsuccessful treatment attempts. However, a glimmer of hope emerged as two-thirds of these cases showcased improvement, though some faced relapses. The complexity of symptoms raised questions about persistent infection, ushering in a period of uncertainty and exploration.
The Neurological Component and its Challenges: Dr. Cameron elaborated on the chronic aspect of Lyme disease, particularly its neurological dimensions. Drawing parallels to a constant "fight or flight" response, he described how the immune system's perpetual activation led to a relentless state of hyperarousal. This state left individuals in a perpetual state of being "tired and wired," with sleep disturbances, heightened mood fluctuations, and sensory sensitivities. Cognitive impairments emerged, manifesting as difficulties in processing information and sustaining attention. The autonomic nervous system, responsible for automatic functions, further contributed to the array of symptoms experienced by patients.
Neurological Sensitivities and Pain: Sensory sensitivities and pain, particularly joint and back pain, are common symptoms. Dr. Cameron notes that while pain might be a central concern for some, it might be overshadowed by other symptoms for others. These intricate manifestations often puzzle both patients and healthcare professionals.
The Role of Clinical Judgment: In light of the diagnostic challenges and overlapping symptoms, Dr. Cameron stresses the importance of clinical judgment. While tests play a role, he underscores the need to consider patients' responses to treatment as a crucial factor. Dr. Cameron's approach involves a holistic assessment of patients' experiences, symptoms, and reactions to interventions. He emphasizes the limitations of solely relying on test results and the significance of adapting to each patient's unique situation.
Treatment Strategies and Challenges: The conversation delves into Dr. Cameron's approach to treatment, which often involves antibiotic regimens. He underscores that while some individuals rely solely on alternative medicine or symptom management, there are often missed opportunities for addressing persistent infections. Dr. Cameron explains his rationale for trying antibiotic treatments, particularly when patients have not explored all options. He acknowledges the complexity of these conditions and the variations in individual responses to treatment.
Considering Holistic Wellness: Dr. Cameron discusses the potential value of addressing mitochondrial health and other aspects of wellness alongside traditional treatments. He acknowledges that various paths can lead to improvements, with some individuals finding success in integrative or alternative medicine approaches. He emphasizes that his involvement typically occurs when such approaches are insufficient in resolving the issues.
Incorporating Holistic Wellness and Lifestyle Management: Dr. Cameron underscores his approach to addressing more than just medications and supplements during patient visits. He dedicates substantial time to understanding patients' lives, stressors, coping mechanisms, and overall well-being. He explores how patients navigate challenges, maintain resilience, and manage daily pressures, in addition to their medical treatment. This comprehensive approach acknowledges the intertwined nature of physical health and emotional well-being.
Inclusive and Collaborative Care: Throughout the conversation, Dr. Cameron's commitment to a collaborative and patient-centered approach shines. He places a strong emphasis on shared decision-making, where patients are active participants in their treatment journey. Additionally, his practice encompasses involving family members when necessary, acknowledging the interconnectedness of familial dynamics and patient well-being.
Navigating Patient Skepticism and Frustration: Dr. Cameron reflects on his experiences as a Lyme disease specialist and how even he encounters skepticism and frustration from patients. He acknowledges that patients often approach him with a mix of doubts, fears, and prior negative experiences with other healthcare professionals. This skepticism further complicates the patient-doctor relationship, requiring physicians to invest more time in building rapport and mutual understanding.
Conclusion: In this interview with Dr. Daniel Cameron, who specializes in the treatment of Lyme disease and related infections, a comprehensive exploration of Lyme disease diagnosis, treatment, patient experiences, and healthcare challenges unfolds. Dr. Cameron's extensive expertise shines through as he discusses the complexities of Lyme disease, the importance of understanding its various manifestations, and the need for personalized treatment approaches. His dedication to personalized care, his insights into the intricacies of Lyme disease, and his commitment to patient education and empowerment make this interview a valuable resource for both patients and medical professionals alike.
Disclaimer: Everything we discuss here is just meant to be general education and information. It's not intended as personal mental health or medical advice. If you have any questions related to your unique circumstances, please contact a licensed therapist or medical professional in your state of residence.
Destiny Davis, LPC CRC, is solely responsible for the content of this article. The views expressed herein may or may not necessarily reflect the opinions of the guest.
The content in this blog post comes directly from a real, human interview between Destiny and her guest on The Chronic Illness Therapist Podcast. This written version was formatted using AI. Listen to the full episode to hear the actual conversation.
Listen to my full conversation with Dr. Daniel Cameron on Ep 40: Breaking Down Barriers in Lyme Disease Treatment: Expert Interview with Dr. Daniel Cameron
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Episode transcribed with AI and may contain errors that are not representative of the actual word or meaning of the sentence.
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Dr. Daniel, Cameron is a nationally recognized leader for his expertise in the diagnosis and treatment of Lyme disease and other tick borne illnesses. For more than 34 years, he's been treating adolescents and adults suffering from Lyme disease.
I was particularly interested in interviewing Dr. Cameron because I have myself have. I had Lyme disease in the past. Who knows if I still have it or not. I certainly still have lots of different symptoms that are associated with something like chronic Lyme and chronic Lyme is highly controversial, which we'll talk about in the interview. Unfortunately, there's no clear cut answers, which is how I feel it's going now with long COVID and other. Fatigue. Kind of illnesses. Um, chronic fatigue syndrome, fibromyalgia. You know, we have these names for what's happening, happening in our body, but we don't really have a whole lot of answers. So Dr. Cameron, um, has been working with patients with Lyme for. Three decades. , And I hope that this interview is as exciting for you as it was for me to conduct.
I would love to start a little bit by you telling, kinda just telling us a little bit about, you know, your practice and who you are and all that
fun stuff. Okay, well my name is Dr. Daniel Cameron, and, uh, I've been around the block. I started practice, uh, 1987, so it's hard to believe it's 30, uh, six years.
Uh, you know, that wasn't my original plan. I started out the University of Minnesota, well, I started out on a farm, then University of Minnesota, got excited about geriatrics, spent the next 10 years getting trained, uh, did my residency and. My first job was in geriatrics, and then as soon as I got into practice, I realized that all the things that challenged me in geriatrics challenged me with Lyme, and it was all ages.
So, you know that that's all the psychological issues, the social issues, behavioral issues, the being misunderstood, uh, as in geriatrics being, uh, chronic, in geriatrics, uh, all of the same challenges, all the same frustrations that the patients had. Uh, I thought that's me. That's my career.
That's true.
There's so much that goes hand in hand with geriatric memory loss and fatigue and just losing abilities that you used to have before. What specifically got you into Lyme in particular? Was there something that piqued your interest personally or just professionally?
Well, I, I had, uh, three patients that in that first year that.
You know, I cut my teeth on, you know, they were learning, I was learning. Um, I was in net networking with whatever doctor I could find. There weren't many, uh, also with the community, um, and there wasn't much written. But, uh, you know, since I was an epidemiologist, I could read the articles myself. I didn't have to wait for the cdc.
And, um, so already I was getting to know, uh, Neurologic issues and three years later, you know, everything that I had been seeing got written about by, uh, Dr. Legian, uh, even steer, who was credited with the Ray in the first papers online, was in it where they cry, described chronic neurologic Lyme. Same issues I was seeing.
They were talking about, you know, brain fog, fatigue. Lightheadedness, dizziness. Uh, they had, some people had been sick up to uh, 14 years. They had, uh, been failing treatment, but two thirds, uh, improved. Some of 'em were relapsing. Some they weren't sure if there was a persistent infection. So every issue I can imagine, instead of only me seeing it, it was in that first paper in the New England Journal of Medicine and I thought, haha.
That should be a piece of cake. We should be able to, uh, work together on, uh, trying to solve the chronic neurologic part of it. Didn't work out quite as smooth as I would like. Yeah.
I'm curious, um, if you can talk more about that, the chronic part of why and, and even why some people don't believe in it and what the controversy, controversy is like there.
Well, the first investigators. Had focusing on a rash. Uh, in fact, even the first sign was a swollen knee, so that's why everybody thinks it must be just a swollen knee. Then a few of them had a tick bite, a few of 'em rash, so it took a while for them to figure out that it actually was something from the tick in the tick that led to a rash, led to the swollen knee, led to Bell's palsy, and so life was pretty simple at that point.
They even discovered there was a spiral key in the tick. And wrote the first paper in 82. We're not talking about that long ago. So five years later, I'm busy seeing patients who are chronically ill. And the way I see it is that over time is the neurotransmitters and somebody gets active, their immune system gets active, so they get kind of like a fight or flight, an adrenaline type issue that never stops.
So it's like having a fight or flight every day. So that means they're tired and wired. They can't sleep. There's, um, so much going on. Every mood button turns up so they can have a wave of irritability, anger, uh, rage, uh, anxiety, o c D type stuff. Uh, the sensory systems turned up so they have often sense of light to sound, to heat, to cold.
With all that going on, of course, they can't concentrate too well, although they officially call it processing. You know? You know, people can fool everybody by, you know, they can get it, but they have to work hard to process the facts. Process the words process what they talk, and then there's something called the autonomic nervous system, which handles automatic things like get up or lie down.
So sometimes it's bad. They call it pots. But some people just don't have it quite that bad, but it still messes them up. That automatic thing called an autonomic controls the stomach. Their stomach can be off. Um, remember I said the sensory's off? So sometimes they're tingling in their hands and feet. Uh, so they can have joint pain too, but not everybody gets the joint pain or the back or the neck pain.
But, uh, pain can be dramatic in some and. The least of their problem and others. And so that was described so clearly in New England Journal of Medicine. I thought, aha, if I'm seeing it and they're seeing it, then uh, doctors are gonna pivot from acute to chronic or, uh, in other words both. But that pivot didn't take place.
I'm still there, but that the, the authors of New England Journal of Medicine did not pivot to, um, Very well. In fact, uh, some of them got together and wrote a guideline saying that, uh, there was no such thing as chronic Lyme, or at least it didn't exist as an entity. And they say anybody who thinks they have Lyme, it's nothing more than ache and pains of daily living.
So that came almost like a tribe, you know? That was the answer all the time. Nope, it doesn't exist. No, it's nothing. Anyway. And so years were lost by doctors coming up with that approach. And that, uh, really was rather destructive to trust with doctors. It's also frustrating cuz if a patient saw them, they weren't getting very far, if they didn't come in with a rash, uh, at the time, it could become quite difficult to find a doctor that, uh, understood the chronic parts of Lyme.
Yeah,
that makes perfect sense. I'm curious if you know why they never pivoted? Was there something Yeah. Was do you have any insight into
that? No, there, I don't think it was clear. You know, so much of it in medicine depends on what we call thought leaders. You know, we, you know, as a patient we read, uh, I read and, uh, listen to patients, work with patients, get to know it pretty well.
But medicine's often waits for a thought leader, some leader to say, Hey, what to do? So they kind of got stuck on the first few, uh, doctors, they haven't moved much. Nobody's given the go ahead to, to treat. The second thing is probably Lyme disease. Patients are quite sick. So if you have a busy practice, if they're sick and they're coming in, uh, in fact they're so sick, so tired, so wired with so many mood issues and other issues that.
It doesn't fit in very well with your HMO practice where you got 10 minutes to work that thing out. Now I find that I can make it work out if I, you know, come up with the systems to, to control it, um, you know, the interview and to work with the interview and accept that they're sick and start out a strategy.
And probably, um, uh, the third is that, um, That over time is that they made some poor decisions on calling it psych or calling it fibromyalgia, chronic chronic fatigue. Uh, they're calling things after covid long, covid so that when you make mistakes and start labeling things, you get caught up in, um, frustrations of doctors that they're, they're labeling things, they're calling things you criticize as doctors, if you end up questioning the system.
So I get beat up. Others get beat up and who wants to get beat up, so they just say, Nope, it's not a problem, and you gotta work this out with a psychiatrist or work it out with somebody else. But, uh, I've been told it's not a problem. Yeah.
Well, I think there's plenty of living proof to, to def to dispute that.
I'm curious, how has testing changed since you first started in
this field? Well, the Lyme tests haven't really changed much of anything. You know, there was something called a two tier where they had a positive Eliza, which is against one protein. Then you had a Western blot that was very hard to um, meet.
You know, they made it really hard to meet because they were hoping to do the vaccine and get a nice, clean test that could prove you had Lyme or prove you had vaccine uh, issues. But, You know, that was 1994, but they haven't changed that two-tier test since 1994. We're already at years later and almost three decades later, and we still don't have a better test for the Lyme.
So some of the labs, like, uh, IgEs lab said, well, how about two bands, maybe two out of 10. They were actually at the 1994 Dearborn meeting and proposed the two bands, but nobody's been budging on. On that HYGENICS criteria that was proposed, nobody's, uh, come up with too much in, in a way of a better, better western blot.
They've been trying to come up with like C6 peptide, uh, some other test to try it. At least get a test as good as a, the two tier test. But if the two tier is not very good, just matching it leaves you with, uh, not so good a test. And then they keep discovering new things in a tick. So they found Babesia as a parasites in there.
The anaplasmosis, uh, Ehrlichia, even Barella is, is complicated cuz it's seen in cats or at least on mites on Cat. Uh, but since it keeps showing up on testing it, it looks as if that's a far part of it. And so it's say there's all kinds of fighting among doctors over. Which labs, the lab you should go to, what criteria you should use.
Uh, and then there's some newer labs that are coming along that are trying to come up with something. Uh, and uh, you know, I always find that, you know, there's always gonna be false positives, false negative, and no matter what you do, I try not to get caught, caught up in on. It's gotta be a positive or every positive is true.
I, I, at some point, the patients, the counts. Their response to treatment counts is that I don't like to kind of put all my eggs on the line test anyway. You know, eventually some doctors kind of look that way and thinking, oh, that test is, I don't want that test. And then they forget that you're there in a room with a illness that you gotta use some, uh, judgment on.
That makes sense. How do you differentiate when it comes to things that are. Really hard to differentiate between, like, for example, even Ella's Dolos syndrome. I work with a lot of folks with e d s, um, and there's so much overlap with, with all of these. And you mentioned fibromyalgia and, and some of these other kind of syndromes.
I'm just curious. Yeah. How do you differentiate?
Well, how I approach it is the immune system is active. That whether it's, uh, the traditional things like rheumatoid arthritis, Uh, lupus, uh, long covid after covid, you know, Epstein Barra syndrome, uh, with the, which they now think is more just a chronic fatigue.
All of these e d s are possible. So I might talk about Lyme disease quite a bit because, uh, I've been working in the field write about it, write guidelines, uh, part of ilads as president, but. In actual practice, I end up having to have a variety of doctors involved to try to look at different diagnosis, especially the neurologic, rheumatologic diseases.
Those, I wanna make sure I don't miss any of those. I, um, you know, I might, you know, if I can't tell the difference between e d s, uh, chronic fatigue, fibromyalgia, and long covid, I might take the Lyme disease part. And see if that's a part of the illness. But, uh, I also inform my patients that they can meet more than one criteria.
It's just you gotta pick something. And the other thing is that ticks are hungry. So if you have fibromyalgia, e d s, they might take a meal anyway and leave behind something. So sometimes I have people with dual diagnosis. They're pretty comfortable with their e d s. They're comfortable with the fibromyalgia.
They don't want to question the fibromyalgia. Um, but they get bit. Now I have had some surprises when somebody's convinced they have fibromyalgia. I treat them for a line and then they get better. And so I, it's uh, you know, cuz they were resistant ever. Giving up on the diagnosis of fibromyalgia, cuz they're kind of grown used to it.
They know it pretty well, they understand it, they can adapt to it. And then if I treat 'em for Lyme, all of a sudden their issues disappear. So that there are people where they change categories that I see. But I always have to do follow up visits because just because I might give Lyme a chance, is that, During the follow up visits where I'm addressing, could there be another diagnosis that I'm overlooking another, another concurrent diagnosis, um, or that it change.
So I just try not to have people even buy into Lyme as the only answer, you know, time and maybe specialists will help. And that that seems to be a, a more organized approach rather than a one, one and done visit. That makes sense.
That makes a lot of sense. Um, when it comes to treatments, you, you utilize, um, antibiotics, right?
Yeah. Well, I often end up with people who are relatively new or they may have been sick for years and years, but they. They haven't exhausted every antibiotic option. So, you know, there, there are some people who have failed everything and rely only on alternative medicine, uh, or they rely just on symptom management.
They rely on some other diagnosis that, but I find when I tease through a story is that there's missed opportunities for persistent infection. So I'm more of an advocate to look, if there's a possibility of persistent infection, why not try it? It's pretty common at Babesia as a parasite is overlooked, or that doctors have been reluctant to use a tovo quon or they do it for 10 days.
And so that's probably the most common infection that's, that's overlooked in in patients. Um, but uh, you know, just cuz Bartella is controversial doesn't mean that there aren't some treatments for barella that might work. You know, like Rifampin or Bactrim. Sometimes there's, uh, theories that maybe, maybe there's biofilms, maybe there's cyst or round bodies.
There's a, there's, there's persisters that may be causing problems. So I might tinker with an antibiotic to see if I can get, um, some of those taken care of. But, uh, you know, I often don't get to all those things cuz if they get better with just re-treatment or longer treatment or combination, it's, they read, they read, read, and then it ends up, um, They get better.
So do I, do I have people that uh, fail? Yes. And I have some really, uh, sick people who've been sick with whatever I've done and whatever alternative medicine have done. So, you know, there's certainly, um, challenges ahead that, uh, for, uh, the Lyme community and I'm sure that most alarm community reads and they just, like I do all the other diseases, trying to make sure they don't miss anything.
And they read and see if there's any clues from the e d s community or the, the, the chronic fatigue community. Is there are this, some clues is, uh, you know, I, I've been thinking that and hoping that with the long covid, since there's millions of people told they have it, is that maybe there'll be some, uh, dollars and research in that area that might help us understand it.
Right now, most of it seems to be going into more of a chronic fatigue type approach. So the money's pouring in there where I'm not sure how fruitful that's gonna be. Yeah.
There's a part of me that wonders if you, if you just take care of like your mitochondrial health and these other aspects of your body that might get diminished, um, when you have something like a, an infection that's constantly kind of barraging you.
Um, I just wonder, does that, does that help in treatment? Does that even, um, maybe even like, get rid of the issue, like the body can heal itself in the right condition kind of thing? Or is that Not really,
is that, there are some, a couple IME studies where the mitochondrial changes take place. The same mitochondrial issues that are show up in, in other, uh, Diseases that we're talking about today.
So I always tell people there's more than one path to get there. So even if I'm an advocate for giving Lyme a persistent Lyme disease, a chance is that there are probably other paths and there seems to be some people that do so well with an alternative medicine that, um, that path works for some people.
I mostly get involved with the alternative medicine path wasn't enough, you know, and there's of course some people in between where they're pretty good, but there's still something wrong. I see that type also. So I know the alternative medicine, integrative medicine or mitochondrial medicine has some value, uh, for them.
But I just get involved when it's not enough.
Yeah, I might need to call you Dr.
Cameron. Yeah, there's always questions on every patient I have. And is that what's normal? What's healthy? You know, you wanna, you wanna get to the best level you can, but some people are two or three levels below where they want to be.
And how do you get that last level? Um, so I have some of those discussions where yes, they're, they're pretty sick, but not like they were before. But you know, I always think of it, they look out the rear view mirror and they don't see home anymore. They, they've certainly made progress, but they look out the front saying, well, gosh, did my mom sign me up for the 5K 10 k, uh, uh, marathon or, or, um, Ironman, like, you don't know kind of what's ahead and how to get there.
And. Should I run? Should I jog? Should I go to alternative? Should I do? You know, but there's like, how do you get there is, there's more than one path. That's a really
good analogy. I like that. Um, and how do you know when it's time to stop treatment? You mentioned some clients have really complex cases, even within your help with alternative help, like they're just not getting better.
How do you know Yeah, when it's time?
Well, I have always have room in my practice because, I always tell people they get better. So there's a lot of turnover, you know, you know, on the internet it looks like nobody gets better, you know? But part of it is Google Rewards and nobody gets better group cuz they have more colorful language, they have more followers, they have.
So it's a, all the ones in between. Um, Don't have the colorful language, they get better that plus they don't wanna hear about, uh, Lyme or any other of these infections. That's the last thing they wanna do is get in front of the computer and write about their stuff. So there's lots of, uh, people that get better and, uh, you don't never hear from 'em again.
So uhs. Um, so in terms of how long, you know, so I have people that are all better in a month or two months and they can't remember take their medicine anymore. I have to put 'em on alarm clock to try to remember. Because they're not sick enough to remember to take anything. And then of course, the braas ones remember everything and that, but, you know, three or four months, you'd be surprised how many people are, uh, have got to their goals.
And, and I used to use intravenous more, but with the understanding of co-infections, uh, uh, with a better understanding of like rubia, is that in there? There are some pill approaches that do so well. So I don't go to intravenous, uh, very often anymore. Um, which makes it of course, a lot easier if they can get to the goals using their prescription plan.
Cuz lots of prescription plans work quite well. You know, they don't challenge you. They, they, they might challenge on the iv but they don't really challenge on the, the pills. And then this GoodRx came along that. For those who don't have good insurance or have 2000 deductibles, the GoodRx, uh, makes it the price affordable on almost all of these, uh, drugs that I'm talking about today.
That's great.
Yeah. That's a really, I think, underutilized resource, good rx. Um, but yeah, for mental health too, that that can be really li life-changing for a lot of people. Cause I know my, my deductible's like $6,000.
Yeah. In terms of cost is that since there's more than one path to get there? Um, you know, even though I advocate the alternative medicine and Lyme, well, I mean, I, I mostly work on the, the possession Infection theory.
Uh, I'd be surprised that I don't actually order that many tests. Um, I usually order whatever tests I can locally, even though I know they're not. So good and I'm gonna treat clinically, so if I do that, I save a lot of money on tests and, and use the prescription plate. If the oral, that saves a lot cuz that's part's covered.
Even though there's more than one path, the treatment for Lyme with an antibiotic is not near as costly if you can do it with a pill. So there's a lot of people expecting to, you know, pay five grand or 20 grand and 30 grand and. And they're thinking, gosh, that's all it costs, you know, to, uh, so, you know, if it is a persistent infection, it's usually the cheapest way to go versus just treating the symptoms and all.
That's from my pers that's just my view and my perspective is it's, uh, those who, where it's a persistent infection, uh, have it, um, a cheaper way to go as long as I don't keep ordering tests and endless tests and chasing after tests and, and those kind of things. I don't like pulse therapy either. I. Know, some doctors have like post therapy, which is, they treat, you know, they treat, and then they also treat, uh, like once a month with a few, uh, like tend max or things like that.
So even though that works for some, I, I'd rather treat more persistently, take probiotics, eat right. The other thing I do lots of times is, and spending, spending all my time on pills and supplements and everything else, I, it's so important to counsel my patients so, Most of my, my visit is not supplements.
It's where are you in your life? What are you doing in your life? What's, um, how are you adjusting with the, the pressure, the school issues, the parent issues, and all the conflicts that are out there? And how do you personally feel when you're in the depths of despair? How do you deal with, how do you like, pull yourself out and up to, uh, get up every day?
And, and even if you started getting better, how do you process it so you don't end up. With a p ts D type of, uh, symptomatology, you don't end up, uh, um, with a secondary, you know, frustration, anger, and bitterness. And last, I I, with students especially, I try to make sure that they get the school done, if possible, any way, shape or form.
Because when they get better, I want them to be able to be at least reasonably close to, uh, their grade level and their cu and their friends.
Yeah. Um, when you are working with the individual, um, you also bring the family in, right?
Yeah, I, even if their parents are split, is that with adolescents and tweens, it's great to have 'em all in the room the same time and get on the same team because nothing is more difficult than having, um, a war in the family over the treatment.
So, um, often if, if I get that child involved, even tweens in discussing things, talking things, um, out that the, you know, it's a different level of conversation than you have at home. Everything's on a table. The fears, the worries, the frustrations, uh, on, uh, on are on a table and it's, uh, it's helpful to start building things.
The other thing happens a lot of times is the kids focus in on the, the hers or the flareups, and the parents are actually seeing some changes, uh, and functions, some changes outside. And so you get these like mixed message right in the room of where they're at. And so, I think that that beginning of trying to get understanding, you know, the parents scared because every last symptom they have kids, uh, you know, lost and it's been a while that they've had, uh, any communication.
And so I've been, uh, I've been devoted most of the time to that engagement, you know, right on the spot rather than, than some, uh, just hand a pill over. I mean, every doctor does it to some degree, but I put a premium on it. And, uh, invest an awful lot of time in that, uh, in that part of, uh, taking care of somebody with a tick-borne illness.
Yeah, I'm sure that, I'm sure that increases your efficacy in helping clients.
Right. And, and how to rebuild, you know, how to, you know, not only turn the corner, cuz otherwise it's really easy to sort of head down a path and get frustration whether you're, and or, and sometimes it's like, You know, the sick and tired of being sick and tired and, and being everybody frustrated in the house.
Right now, I've been, um, uh, uh, have having some fun with, um, TikTok with, um, you know, reflecting on 36 years of experience with conflicts, with problems where kids are, where the fears, where the frustrations are, the frustration with doctors and so, So instead of just writing guidelines or doing all kinds of, like, you know, I've finished a book recently, a new book, but having fun with doing what we're talking about today is how do you explore in a, in a shorts in a few seconds.
Uh, various things that I see in practice in the room with the mom and dad and the kid there, or what they're experiencing when they go out and try to get care at different doctors and, and what they inside, inside personally feel. Even if nobody's in the room, how do they personally feel? And so that project I'm doing right now, um, I move everything from TikTok over to Instagram and YouTube shorts.
But the, the main goal right now is to really dig down into, um, The communications part, uh, the, uh, all of the mental health parts. Uh, and I'm not a mental health provider. I'm not a psychiatrist, but I can do the best I can as an internist.
Yeah, absolutely. I think, you know, we've gone so far away from holistic prac, you know, there used to just be one general practitioner for this, you know, village, for this small town, and.
They had an intuition about their patients, about, you know, it wasn't an in, I know this disease, uh, like the back of my hand. It was, I know Mary Sue like the back of my hand cuz she's my neighbor. Yeah. And I have an intuition that can help guide me with my edu and, you know, mixed with my education as a doctor and we just don't have that
anymore.
Yeah. Well it's a, it's it's patients themselves when everything's so intense. It often is, or it's been for so long and intense, is that they probably drive the doctor crazy cuz the doctor's used to, well now they're just used to saying, oh, uh, what do you got? After about two things they say, oh yeah, go to the infectious disease doctor, go to the rheumatologist, go to this doctor.
And so that primary care doctor, Isn't used anymore to, to setting up a relationship. They're already triaging it as somebody else. And that, so that then when you go there, then they're used to one part of it, one dimension as a rheumatologist. And they're not used to the fact that the illness is and is, is broad base, you know?
And, uh, so that's why the medic medicine, the way it's divided up now is not good at, uh, the, the complexity of patients that are there. And so the patients, when they read ahead, you know, they, they don't remember sometime, uh, the doctors are kind of tying themselves in knots. They're painting themselves in the corner.
The patient reads ahead, knows all the other stuff that's been discovered the past 30 years. It's a, there's a kind of a setup of conflict between the patients that know a lot and the doctors are, know a lot, but they. Putting themselves in the corner so you get this conflict that, uh, right away within seconds that, uh, are hard to resolve.
That's right. Yeah. I, oh man. I always see this meme online that's like, you know, don't confuse your, um, your Google search with my, like, doc, my doctoral degree. And then the responses, don't confuse your degree with like, my lifelong experience with this illness. Yeah. It's true. Yeah. It's just, it's like an immediate power struggle between provider and client, cl patient, and you can't even get anywhere now.
Well, even me, you know, after 36 years of experience of writing guidelines, writing 600 blogs, um, writing this latest ebook, which compiled them all, and I bet everywhere, and it seems like I, I show up everywhere, but. I get every day. I get patients challenging me, questioning me, kind of, uh, really intensely.
Um, even to this afternoon, I had, uh, somebody that traveled from California and, and so you know, that you could tell, and they were at least articulating how, the rage, the frustration, the fear, everything I possibly think of and, and of course then they're worried whether I'm the right choice.
They're question me. They're not sure I know what I'm talking about and this and that. And so it's like even me, you think with all that stuff that I, you know, I've just come up with a pretty good list is that I get challenged on a regular basis for do I know what I'm doing? Yeah, of course I do the best I can, but I still know.
That for me to get challenged quite often, at least two or three times a day, and whether I, whether I'm credible, is it shows you that how hard it is as a doctor to take them on. So how do you deal with an illness where that even experts, uh, Lyme experts can get challenged. Yeah.
Yeah. It's, it's a nervous system, fight or flight, lack of trust.
We don't, we don't trust doctors like we used to. I think it used to be, and we've talked about this on the podcast a little bit, but, you know, doctors used to be kind of the, the, the all knowing, you know, they were all knowing and the doctor said, so you do. And then I think there's just been, and this is true in our mental health field too, there's been so much trauma done by, Helping professionals, doctors, therapists, you know, who kind of get into this, this place of power and knowingly or unknowingly abuse it and, um, you know, treat the patient as a number or treat the patient as like they don't know what they're talking about.
And it creates this, um, this lack of trust. I do, I do think we're on this other side now where like there's very little trust for doctors these days and it's, I think it's swung. So far on the other side, um, it's just not making for good doctor patient relationships.
Yeah, certainly. Well, you, you said it right there that if somebody has a fight or flight in their system and they first meet a doctor, you, what I find the same thing is I have patients who are in the same interview, same intake, uh, ready to fight me or fly out the door at the same time, so they're having a fight or flight.
Experience and I'm trying to do the best I can. And I, and I, even with all I've done, I, that fight or flight is right there, right in front of me. And so plus, plus their emotions can flip through several, they can, I call it tsunami. They can have a, a wave of, uh, rage and then anxiety and then sadness and O C D and this and that.
Even that first paper in 1990, I. At the New England Journal of Medicine, they were noticing, you know, extreme anger as part of their original description. So the fact that I'm thinking now today means that I saw 87, uh, they described it in New England Journal of Medicine. And so most doctors aren't kind of used to the having a fleeting rage or fleeting anxiety, fleeting fear, or brief crying for outta nowhere and.
There's, you know, that they'll often go through, uh, a waves of experience. So that's why it's, um, how do you get that experience to be successful? Is, is, is a, uh, is a challenge for, uh, the doctor, but it's also a challenge for the family.
Yeah, because I think, you know, when, when there was this inherent trust in doctors, that in and of itself calms some of that fight or flight just by having someone or something in the room that you trust.
And so if, if that is no longer placed with the doctor, And now you have all of these different types of information and different medical trauma experiences and, and all of the things that this, and then on top of just simply the illness itself causing this amount of rage and emotional, um, tumultuousness Yeah.
That you need something. And that's what I work on with clients, um, especially when it comes to medical trauma. How do we resource your body? How do we find this calm, centered place? Not trying to convince them to trust anyone, because that, to me, that that doesn't work. You're gonna come to the trust on your own, through the relationship with the doctor.
If you just give that a chance, um, you'll find that the doctor's right for you or not right for you. And so we work a lot on, um, bringing that fight or flight response into, um, more like a. Like waves. Like we want, we want to have access to our fight or flight system. We're not trying to suppress it or numb it or, or you know, we're just trying to calm it down, um, and allow it to still be there so that you can move through the world without that rage, despite the fact that there's this thing in your body causing a lot of
pain.
Right. I spent a fair amount of time trying to at least get them to understand it, know it, palpate it, and I understand the nuances, all of the things, cuz if they understand it, it's not quite as scary if they understand, uh, um, first of all that it occurs and why it occurs. They don't have a lot of control over it.
They do have control if they eat right, take care of themselves, talk about it. But still, uh, you know, They don't always have the insight. They, they know of some key symptoms, but that's, uh, it helps, uh, just what you're talking about is that, how do you process it better? Yeah.
I think that's another key piece just ha you know, having information about your illness.
Um, like you said, people kind of come in knowing a lot these days and there can be a lot of conflicting things that we read and know. But when you finally kind of learn information in a way that makes sense to you and it, you know, it, it feels corroborative, then you can, that alone, uh, calms your nervous system too.
Just trusting in the information that you have, even if it's not great information, even if it's scary information, doesn't have a great outlook. Just knowing that you trust the information alone calms that nervous fight or flight response.
Yeah. I'm on the same page as you. It's what I see too.
Yeah. I love that one.
One quick question about diet, cuz you mentioned it a couple times. Do you individualize that to the person or do you kind of ascribe to one type of diet?
No, I just tell people that whatever diet they pick, it should stay away from processed sweets, uh, and alcohol. Um, if they eat any carbs, um, try to eat it as part of the balanced meal because even if they eat something, they need to process the.
A little slower than normal cuz it's a junk, junk. Food junk calories get processed so fast. So there's plenty of diets like gluten-free, you know, the, uh, alkaline diet. There's a lot of diets, but it's, as long as you keep those fundamentals going, I, I try not to micromanage the diet. You know, the, most of the providers I see tend to have a favorite diet that they do, you know, so I just say, well, that'll, that'll work as long as you keep those principles in place.
And take probiotics.
I like that. Recently on TikTok, there's a couple doctors I've followed that are really, really claiming that probiotics don't even make it to your gut and like do nothing for you. I'm really curious if you know anything about this new kind of thing that's going around and if you have thoughts on it.
Well, the infectious disease community has always been against, uh, probiotics. You know, they didn't realize much data. They just said they, they don't, you know, they. And, uh, but, uh, you know, the few studies have been done. Uh, you know, one was on, um, I think it was, uh, certain types of diarrhea, um, which is, uh, like a colitis type diarrhea.
They were able to prevent quite a few of the cases of, uh, diarrhea and those individuals. And that's one, uh, uh, you know, where they have the control trial. They're sick enough that they, and have enough bowel problems, they're. They're not from antibiotics, and they were able to show how clearly the probiotics, uh, work.
Um, you know, it's possible that they die off. We know that everything gets tied off when it goes to the stomach acids, but, uh, from my experiences that probiotics are quite helpful, but there aren't too many experiments that can say it. You know, there's also a, a fight over how many bacteria, so I always say it, whatever you pick, do like 40 billion, 60 billion.
Sometimes maybe take two types. If you have two different bottles, they have different kind of bacteria, but that, you know, there's always swings into pendulum over, over things that are unclear. So, mm. I I think that, um, it's certainly unclear that probiotics have any value. If you're not sick and you're not taking antibiotics, that's a, that seems there's a fair amount of evidence they can't quite prove that they work for general health.
Okay. But you actually have to date an antibiotics. That's where they've been able to show some benefit. Okay. I think they're probably right, if that's probably where they're getting it from is that there's a few articles that said it doesn't any benefit if you're not sick. Gotcha. And there's others that say, well it's, it's organic, it's natural.
It makes sense. I like it. It helps me. But that they, sciences can't really prove it helps healthy people.
That's interesting. Yeah. Cuz right now there's such a like, um, boom around like optimizing wellness and I just, I think it's gone really, really far. Um, and I do think that there's a lot of stuff that we are doing unnecessarily where if you just provide the basics, which I, I heard you say with the diet and I love that.
Um, Your body really does know how to do the rest. You know, we can help it when it needs help, but maybe back off when it doesn't need so much help.
Yeah. And that, right. So I think that's, uh, that's why I keep some fundamentals in because a lot of people do alternative medicines anyway, even before they get limed.
They just, endless amount of people take it for, uh, For health, wellness, and nutrition. And so, or if probably a third of the population does that anyway without being sick, is that I just try to adapt to people that take all that stuff anyway. Yeah. And what, what can I do and what role can I play? And they sh they typically stay with those things anyway.
And, and, uh, just in case, so I just focus on, on this, uh, this, this area.
And, um, just a quick note, you mentioned like the two, taking two probiotics. Do you, you, were you saying alternate
them? Well, sometimes they'll, they'll be 40 billion bacteria, one type and then 40 bacteria, 40 billion of like, uh, of mixture.
So when somebody says, well, what's the best one? Since they're, I don't see any good studies saying, which is the best one. If you happen to have two bottles, then. It's more of intuitive. It makes sense, you know, in case one's better than others. Someday at least you, if you happen to have both bottles, why not?
But that has nothing to do with science, has to do with just. Yeah, just a a a hunch that,
uh, when you're saying why not? It's like, why not take them both together or why not
switch them? I don't think it matters cause I don't think one kills another. So it's matter. You gotta remember it. So if you remember to take things twice a day, remember it.
If you got time to take it twice a day, fine. But, uh, you gotta still remember to take it doesn't do you any good in the refrigerator sitting there. You know when every time you open it and. So it doesn't just absorb through. I say I gotta figure out, some people remember everything and every schedule and every hour and others, you know, you have to chase after them.
You know, I have teenagers where they can't remember if they took it. So I have mom put out the um, pills in a cup. Yeah. So they have to get through that cup for the day, and they take the probiotic outta the refrigerator if it happens to be a refrigerated type. So the mom just has to look in and say, oh yeah, you have two pills left.
Because they're not about to have a granny pack where you have the, these old packs where everything's in a plastic thing. They're lucky enough to look in that mug and they go over to the refrigerator to eat 10 times a day so they can Oh, yeah. And so that's, that's a fairly easy for a teenager or a tween to keep track of their pills.
They just, their job is to get through those pills for the day. It is not as scientific as someone older who has O C D and or O c D tenancy and or compulsive tendency. They can remember every last little detail, but not everybody's gifted with O C D. I'm talking about healthy ocd, not the kind.
Yeah, yeah.
I'll say there's a, a huge, um, I'll say like, yeah, ocd, um, is definitely that. The clinical diagnosis is, is nothing to be
desired. Right? But I'm talking about that the compulsive type medical students are O C D, but that's ooc d and somewhat healthy where they try to do, right.
There's a new, there's a newer diagnosis, obsessive compulsive personality disorder.
Which is different from O C D and yeah,
it's just, yeah, it very, I couldn't Lucy do it, but I just tell people to at least recognize that there's different levels of checking and double checking that's healthy. Not some of it's illness and some of it's just, um, but that's cuz I'm an internist. I'm not, uh, I those two terms I kind of use a little less scientific than you might.
Yeah,
yeah, absolutely. Yeah. Um, Amazing. I, I think I, I, that's all I have for questions today. Do you have anything that feels important for people to know that I haven't asked about?
No, I thought you did a good job of like, uh, guiding me, uh, through and reflecting on my practice, reflecting on what I do because, uh, you know, we all do it somewhat differently.
I just got a chance to work with you and, uh, and, uh, ponder how I got to this spot after 36 years. So thanks for, uh, your, uh, forum here. Yeah,
absolutely. Thanks for coming on. And your practice is in New York, right?
Yep. Great. Oh, that ebook that I was, I could mention that, that, uh, yep. I, um, you know, took on when I read scientific articles, you know, I've been writing a blog about each one I write, so it got up to 600 blogs.
600 articles and, but it's hard cuz then when you Google you get lost here, you go to that article, you go here and here and here. So, so I took the, the most clinically relevant cases and of the 600 blogs and put 'em in one ebook. So you don't get, you can at least have one basic place where you can at least get your feet wet.
And it's a ebook. So it's, it's written and, uh, words, each article's about 110 words. So I can. Get to the point rather quickly for those who Lyme patients that I have where, you know, they, they can start, but by the time you get past the third page, they're not processing very well. This one, each page has its own topic and you can get to it quick.
So it's just, uh, trying to be mindful to what line patients think, how their moms and dad think, and, uh, and so I've been, I, I put it only on the website for now. I didn't put it on Amazon. So it's, uh, it's there, it's called an Expert's Guide to Navigating Lyme Disease, uh, rather than on treatment. Exactly.
It's a lot of treatment information, but I just want to guide people along so they can get to know it better.
I love that. Yeah. And you're on, um, TikTok and Instagram at. Daniel Cameron md, is that right?
Yeah, it's weird. I think it's Daniel Cameron MD or Dr. Daniel Cameron in different places. Okay, I'll, I'll put it in the show notes.
And then there's also, I'm on YouTube shorts cuz YouTube shorts is trying to get in the action. So they are, I post them in there also.
I love that. Thank you so much for being here today. Um, Yeah, I, I will put all that information in the show notes so people know how to contact you. And you work, do you work with anyone virtually or do you only work with people in New York, or like who can travel to your, um,
clinic?
Well, I've been having people establish a relationship by coming in the first time. Okay, then I do a lot of remote, a lot of, uh, for now until the laws change, uh, I think that, my guess is that doctors had gotten in the habit of doing telemedicine for three years. That telemedicine's gonna be here to stay.
As long as, as telemedicine exists, I'm gonna be using it heavily for those who are, like today, the one from California had to come in. Um, but after that I can work with them, uh, have a lot of flexibility to work with them. Uh, At, uh, at, at using a telemedicine format.
That's great. Thank you so much Dr. Cameron,
and you're welcome.
Listen to Dr. Daniel’s interview with me, Destiny Davis, on Ep 40: Breaking Down Barriers in Lyme Disease Treatment: Expert Interview with Dr. Daniel Cameron
Meet Dr. Daniel Cameron, a nationally recognized leader for his expertise in the diagnosis and treatment of Lyme disease and other tick-borne illnesses. For more than 34 years, he's been treating adolescents and adults suffering from Lyme disease.
With over three decades of experience, Dr. Cameron has dedicated his career to aiding adolescents and adults struggling with Lyme disease. The interview touches on the controversies surrounding chronic Lyme disease, paralleling the uncertainties experienced by individuals grappling with conditions like long COVID, chronic fatigue syndrome, and fibromyalgia.
Connect with Dr. Cameron:
Meet Destiny - The host of The Chronic Illness Therapist Podcast and a licensed mental health therapist in the states of Georgia and Florida. Destiny offers traditional 50-minute therapy sessions as well as therapy intensives and monthly online workshops for the chronic illness community.