Podcast: Looking at Lyme: Understanding Symptoms and Treating the Whole Person

I was recently interviewed by Sarah Cormode for an episode of Looking at Lyme, an educational podcast created by the Canadian Lyme Disease Foundation, where I highlight the importance of taking an in-depth patient history to understand and document Lyme disease symptoms.

I also discuss several approaches to treating Lyme disease and explain why such a variety of symptoms amongst patients with Lyme disease exists.

Take a listen below.

I was recently interviewed by Sarah Cormode for an episode of Looking at Lyme, an educational podcast created by the Canadian Lyme Disease Foundation, where I highlight the importance of taking an in-depth patient history to understand and document symptoms.

I also discuss several approaches to treating Lyme disease and explain why such a variety of symptoms amongst patients with Lyme disease exists.

People with Lyme disease have a lot of different symptoms, the bacteria attacks the body in so many different ways. Sometimes it attacks the brain, the heart, the joints, you name it. Today I'm looking at Lyme, we're going to dive into functional medicine, we'll look at the body from a holistic perspective and meet a doctor who treats the whole body and the mind.

Getting treated early for acute Lyme disease is critical. Some people find the attach ticks and others might get a bull's eye rash. But that's not always the case. And without these telltale signs, people might not get diagnosed. The longer that you have the disease, the worse it gets, and the harder it is to treat. That's when we need to go to the doctor. So, let's do that. There are very few medical doctors with the expertise of Dr. Bruce Hoffman. He practices functional medicine, and we'll get him to tell us more about that. We reached him at his Calgary clinic. Good morning, Dr. Hoffman.

Good morning to you.

What's the first thing that you look for in a patient who potentially has Lyme disease?

Your patients present to a doctor's office with many symptoms and many complex, interlocking possible what we call in medicine, differential diagnosis. So, they present with a whole host of symptoms. And it's the task of the doctor taking the history to try and work out what may or may not be Lyme disease. And sometimes patients come in with some Lyme test and say they definitively have Lyme disease, or they have positive biomarkers for Lyme disease on some of the tests they've done. But when a closer history is taken, that may not be the case. So, there's quite a lot to really sift through when you're trying to differentiate whether somebody has Lyme disease or not. The most important thing is the symptomatology. You want to take a very definitive history. In my clinic, we use different types of questionnaires to try and determine whether or not Lyme may be a diagnosis. And we also then start to take a very specific history about whether they visited endemic areas, which is somewhat a moot point because Lyme disease is somewhat, you know, it's specific, it's everywhere. If they visit an endemic area, if they've been bitten by a tick, if they've had the rash, which is very uncommon, by the way. But we start to ask the history of exposure, history of tick bite, history of rashes and in a symptom history, looking over the variable symptoms that present with Lyme disease and/or co-infections that come along with Lyme disease. A lot of questions need to be asked, and you've got to sift through them and try and determine if Lyme disease is the primary presenting feature or are there any other coexisting disorders that interlock, like mold exposure, or heavy metal toxicity or food sensitivities? And there's many of them that may interlock with a symptom presentation. So, there's a lot to ask.

Yeah, it sounds like getting that patient history is just so critical. 

History is everything. You know, you've got to take a good history. You can’t have a patient walk in and say I've got Lyme disease, and I go, okay, let's treat you. No, no, you have to stop and really ask very specific questions.

And it also sounds like you mentioned that most of your patients don't ever remember having a tick attached or getting a rash.

You know, the majority don't. I do have a number of patients who went to college in northeast in the United States, and they were out in the fields and in the forests, have a history of tick bite and rash exposure. But I would say that's probably 5% of my population. My patient population, it's very low.

Guess when we spend time in the outdoors, if we check for ticks and do a tick check and actually found one attached, we have something to at least document or same with a rash. If you found one, it'd be a good idea to get a photo of that to share with your doctor.

Absolutely. It would be lovely if we had that cookie cutter you know, clear cut, walked in the woods, got a tick, notices for within three days a high fever, headache, and then the Lyme disease rash. That's so seldom.

It's never that that clear? Is it?

Never. I wish it was easier.

So how critical is it then for people to get diagnosed and treated early?

Oh, if they've been exposed and there's definitely a tick bite. And the symptomatology of high fever, sore neck, chills and joints. If that occurs, you get them on antibiotics while waiting for lab data or getting the tick, if it's discovered, sent off to the lab for analysis. Definitely, I’ll put them on treatment right away. And there's different standards of Lyme disease treatment, depending on which school of thought you belong to. Some schools of thought say, you just need like a brief dose of doxycycline. And others say at least four to six weeks of treatment. It depends on your approach.

Do you have a preference?

Longer term antibiotics, definitely not a short term

Yeah, that was certainly my experience, I had about 10 days of antibiotics, and then all of my symptoms came back afterwards.

Absolutely. If patients have an acute exposure, and they have symptomatology, we do have a baseline laboratory test. And then we repeat it four to eight weeks later to see if there's any rising titers. And we send the tick off for analysis. I usually cover them with antibiotics for at least six weeks. 

Wow. That's great to hear. And so, what is functional medicine?

Well, functional medicine is this emergent system of approaching a patient from a very different point of view. Like my medical training is what we, I don't mean to be derogatory, but it's called the N2D2 method of diagnosis and treatment; name the disease, name the drug. You know, that's how we learned in medical school, we just look at differential diagnoses, what disease or symptom cluster does this person have, and what drug can I pull out to help them. That's the specific training, highly relevant, nothing wrong with it. But now we have this emerging cohort of patients who have this chronic multi system, multi symptom disease profiles, with many interlocking issues. And that model doesn't work. And I tend to see and many people who are outside of the so-called traditional healthcare system tend to see that cohort of patients. Functional medicine attempts to take an upstream history back to what we call antecedents, mediators, and triggers. We go and look upstream to see, first of all, what's your symptom profile now? But, when did you start to feel unwell? One of the most relevant questions I ask a patient is; when did you last feel well, and then you want to take it from there, backwards and forwards. So functional medicine looks backwards as to the timeline, or the potential triggers and inherited factors which may play a role, the triggers what may have triggered the illness, and then what we call mediators, what may be keeping that symptom cluster alive. In conjunction with that we look at, not so much as pathology and disease laboratory tests, but we look at functional laboratory tests. How is the biochemistry and the metabolomics? How are they functioning? Are they optimized? Or are they deficient within a spectrum? Traditional Medicine has a reference range of, you know, negative or positive. Functional medicine optimizes function based on individual susceptibility and genetics. It's a very elegant form of practicing medicine within chemical principles. Just old school sort of, you know, when did you last feel well; what happened and what may have been playing a role. No longer looking at single factors, instead, looking at multiple causative factors as to what keeps this patient still symptomatic. And I can tell you, from my experience, that there is never one reason why a person is not feeling well. There's usually a whole myriad and host of issues from poor sleep, poor diet, early childhood trauma, dental issues, food and gut sensitivities. It is complex, long list of what made you unwell. 

Yeah, absolutely. Why do the symptoms vary so much from one patient to the other?

You mean with Lyme disease specifically?

Yes. with Lyme disease specifically?

Well, while it depends on a whole host of factors, it depends on the individual immune response of the person, the total toxic load, the infectious load, the expression of the Lyme disease spirochaete, with or without co infections, the metabolic and nutritional strength of the individual, the immune competencies, the presence of natural killer cell functions, whether they can suppress the immune response. The fact that Lyme disease goes from different forms; the cellular form to an intracellular form, to a cystic form to a biofilm form then it comes and goes depending on your immune surveillance. There's a lot of reasons why somebody has waxing and waning of symptoms and feels variations in their symptom profile.

Is it possible for someone to have Lyme but not have any symptoms?

You can have positive laboratory testing for Lyme and be asymptomatic. Absolutely, absolutely. But you don't see those people because they feel good.

Yeah, definitely. Do symptoms flare and go dormant normally for some of your patients?

They do. They wax and wane depending on stressors, diet, travel and multiple factors affect the expression of symptomatology. Treatment or no treatment. Some treatments exacerbate the symptomatology quite dramatically. They get what they call the Jarisch Herxheimer reaction (JHR) where you put in a treatment and the patient's symptoms just go through the roof. And so, there's all these variations as to why people wax and wane and get increased symptoms at times. But yeah, we certainly have people with, with no symptoms, who have positive laboratory tests as well.

Dr. Hoffman, are you seeing a larger increase in the number of patients that you suspect to have Lyme disease and other co infections?

Absolutely. Yeah. As you know that the Lyme disease diagnosis is highly controversial, depending on which school of thought you belong to. Whether you belong to the sort of infectious disease society, the infectious disease group of medicine, or whether you follow the ILADS criteria for the diagnosis and treatment. Those are these two different schools of thought. Now you know, even with that, there's been a tremendous uptake in the Lyme disease diagnosis and co-infections due to global warming. The migration of songbirds further north and the spread of ticks deeper into the north because of global warming. It's been estimated, one study showed that the songbird flight path from South America to North America brought up to 32 million tick species. In the yearly migration just northwards from South America. So, there's a there's a huge increase in the diagnosis. For sure.

Yeah, especially for anyone who's living along any kind of migratory bird path.

Absolutely. Yeah, absolutely. And there’s this great Canadian researcher, John Scott, showing us published papers on this issue.

Yes, hopefully, we'll get him on a future podcast as well. I'd love to hear more about his research

Absolutely. Yeah.

So I was fortunate to go to the ILADS conference last year in Boston, and I learned about mast cell activation. And I was just wondering if you could tell me a little bit about that disorder.

Well, Mast Cell Activation Syndrome (MCAS) is a relatively new diagnosis. It's been around for a while. Dr. Lawrence Afrin is one of the leaders in the diagnosis and treatment. He's just recently published, which I co-authored, a criteria for the diagnosis. And the reason why that has been important is because previously at medical school, we learned about systemic mastocytosis, which is an increase in the number of mast cells that create disease processes. But mast cell activation syndrome is an increase in activity without an increase in number. And there are different criteria for the diagnosis. Mast cell activation syndrome is a very, very important concept to keep in mind when seeing patients with chronic systemic illness because you'll see it a lot. I see it a lot. Mast cells or white cells act as vigilante cells to try and protect you from incoming stressors. Whatever they may be, whether it's mental, chemical, environmental, infections or food, they spew out at least 1000, not 200 as one's thought, but more than 1000 mediators of inflammation. One of them is histamines. Everybody knows the histamine is a sort of allergy hive reaction. There are many other mediators of inflammation. People with mast cell activation syndrome have this heightened inflammatory response to ongoing day to day environmental exposures and present with a multitude of symptoms in multiple organ systems. And they travel from doctor to doctor you know, they go to the allergist and the rheumatologist and to the neurologists, but nobody ties the systemic nature of this condition together. So, it's important again to take a thorough history and elicit whether somebody may be presenting with mast cell activation syndrome. Now, interestingly, mold exposures and Lyme disease trigger mast cell activation syndrome. So you often get a cross mapping of symptomatology.

Well, what would be your best advice for someone who suspects that they might have Lyme disease?

Well, it's a very tricky one. Because here's my experience. People often want to believe in a one diagnosis - one treatment approach when they present with complex illness. And it's really doesn't do them any favors to adopt that attitude. Yes, you may have a classic exposure and symptom profile, no question about that. But when you've got chronic illness, and chronic multi system, multi symptom exposures, and you go into a Lyme test with a naturopath or an MD, they send it to the states or even they send it to the Canadian Winnipeg group. And you come back with a positive test, it doesn't mean that the reason for your symptom profile is Lyme. Lyme may be the trigger, but you may have a whole host of underlying issues that are playing a role in your symptom profile. And one of the great tragedies that I see in my practice is people who come to see me, they've got a positive Lyme test and they've been treated for Lyme. But it's really not the key diagnosis, there are 70 other underlying factors that are far more relevant than that positive laboratory test. So, in response to your question is just be extremely discriminatory, when you jump to the diagnosis of Lyme disease as causing your symptoms, it may not be that. It may be there, you may have a positive test. But it doesn't mean that Lyme disease is at the root of it. It may be that it is. But you can't just take a positive test and treat it as if that's it. And I see that 90-95% of the time. They just go get treated for Lyme, but it's not really Lyme that's causing a symptom profile. Sometimes it is, of course it is, but you've got to discriminate.

So it's that combination of diagnostic testing and patient history,

History, history, history. If you're not taking a two-hour history with your patient, a timeline from conception to present, plus even intergenerational issues because we know that you inherit epigenetically family trauma. It is very well studied and well researched. Now, if you're not taking a thorough history, and following the timeline and symptom presentation of that patient, at least a two-hour history, you can't really discriminate on a history basis, whether this patient is suffering from one illness or 15 possible comorbid conditions. You have to take that history, then you back it up with laboratory data. The more laboratory data, the better, which unfortunately and again, with our healthcare system, that sort of privilege and that sort of luxury of a two-hour interview with extensive lab data. It doesn't exist. You have to go outside the healthcare system to get that service, you know, which is a tragedy, but it's the truth.

I couldn't agree more. Thank you so much for your time, Dr. Hoffman.

Thank you so much.

My key takeaway from that conversation was just how important it is that a doctor gets a full patient history. I know that in my case, I had a lot of symptoms and it was really confusing to understand what was going on in my body. That wraps up another podcast. Thank you so much for listening. Stay safe in the outdoors.