Our work as physicians and healers is to see the whole patient [PODCAST]

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“Instead of focusing on one organ system, I want to know everything. The diagnostic challenge is to discern patterns of insults, symptoms, and lab tests that correlate with specific microbes, specific organ dysfunction, specific diet issues, and environmental exposures. We keep asking questions until we detect patterns in the chronically ill patient that correlate with any number of overlapping issues such as infections, hormone deficiencies, immune dysregulation, toxic exposures, and diminished capacity to detoxify. And then we explore the interrelationship of all these problems. Differentiation then integration.”

Daniel Kinderlehrer is a physician and author of Recovery from Lyme Disease: The Integrative Medicine Guide to Diagnosing and Treating Tick-Borne Illness.

He shares his story and discusses his KevinMD article, “Our work as physicians and healers is to see the whole patient.”

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Hosted by Kevin Pho, MD, The Podcast by KevinMD shares the stories of the many who intersect with our health care system but are rarely heard from.

Transcript

Kevin Pho: Hi, and welcome to the show, where we share the stories of the many who intersect with our health care system but are rarely heard from. My name is Kevin Pho, founder and editor of KevinMD. Today on the show, we have Daniel Kinderlehrer. He is an internal medicine physician and is the author of the book Recovery From Lyme Disease: The Integrative Medicine Guide to Diagnosing and Treating Tick-Borne Illness. An excerpt from the book was published on KevinMD, and that excerpt was titled “Our work as physicians and healers is to see the whole patient.” Daniel, welcome to the show.

Daniel Kinderlehrer: Thank you so much. Glad to be here.

Kevin Pho: So we’ll get into your excerpt in a little bit, but first off, can you share your story and your journey to where you are today?

Daniel Kinderlehrer: Here’s a rundown. Basically, I did an internal medicine residency, even a chief residency, and I decided not to practice internal medicine because it’s really practicing end-stage medical care. I opened up a practice that I called nutrition and preventive medicine, what we called back then holistic medicine. I learned a lot about nutrition. I learned a lot about environmental medicine, things that we didn’t really get trained in in conventional medical training. And I had a big practice in Massachusetts, your neighbor state.

And then in 1996, I got sick with Lyme disease, and I got really sick and was out of commission. I was quite ill, and when I recovered, I said to myself, “I want to do everything I can to help people not go through what I went through.” So for the past 20 years, my practice has been limited to seeing people with tick-borne infections. And just last week, my book came out, which I’ve been working on for three or four years, hopefully to be able to pass on everything I’ve learned to both patients and physicians.

Kevin Pho: So you have a practice primarily focused on tick-borne illness. Now, tell me some of the challenges that you see in the day-to-day cases that you see.

Daniel Kinderlehrer: I would say every patient is challenging. This is not your run-of-the-mill, come in and get a culture of your throat kind of practice. When people come to see me, the first visit is usually about three hours, and follow-up visits are about one hour. They come in with multisystem complaints that have been going on and building for years and even decades.

So the problem isn’t just Lyme. Then we have to figure out what else these people are infected with, because virtually all of them have co-infections, other infections they get from ticks. And they could have reactivation of dormant infections like Epstein-Barr or other viruses, or suddenly parasites become an issue. And not only infectious problems, but these people have all these downstream issues associated with chronic inflammation. So they have lots of aches and pains, but they have adrenal dysregulation, other hormonal dysregulation, immune dysregulation for sure, and a lot of neurological symptoms. Usually the neurological symptoms are overwhelming.

So we see someone with a problem list that is, on average, between 20 and 40 points long, and then we have to figure out what the different imbalances are that are going on in addition to infections. And because this is a person who’s been sick so long, they’re pretty fragile most of the time, and we have to sort of decide, “Well, where can we start to intervene to help get this person into balance without throwing them off and making them worse?”

It’s a challenge. I mean, I can say that I love the medical detective work of figuring it out, but it demands a lot of hands-on with patients. They have my email, and if they run into problems, they let me know. And it’s incredibly gratifying, because I see people who’ve been sick for years and decades, and I see them restored to health. I see kids who couldn’t make it through high school. They were horizontal, they were so tired and out of it, and now they’re graduating college. They’re actually graduating medical school now. So it’s an incredibly rewarding profession.

Kevin Pho: Now, you talk about your vision of the doctor-patient relationship in your excerpt, and that’s titled “Our work as physicians and healers is to see the whole patient.” It’s an excerpt from your newly released book, Recovery From Lyme Disease: The Integrative Medicine Guide to Diagnosing and Treating Tick-Borne Illness. Now, for those who didn’t read your excerpt, can you just walk my audience through it and share the reasons why you decided to share that particular one?

Daniel Kinderlehrer: Good question. I cannot tell you what the decision-making process was, but I can certainly share the excerpt with you, which is sort of armchair philosophizing at the very end of the book.

I described what happened to my wife about three years ago, when she suddenly developed severe chest pain. She was sort of hunched over, and her arm wouldn’t move, and, basically, got her to the hospital. The bottom line was she did have a cardiac syndrome called takotsubo syndrome. I don’t know if you’ve ever heard of this one. It’s very interesting. There was a lot of cardiac stress but no damage. And she had significant neurological problems. She ended up having her left leg paralyzed.

OK, the cardiologists come in and say, “Here’s what’s going on with her heart. Things will be good,” and she’s stable. And I say, “OK, so how does this relate to what happened neurologically?” He said, “Well, I don’t know. I don’t deal with the nervous system.” And then we ask the neurologists, “OK, you’re finding deficits here and there. Why is it there, and how does it relate to the fact that she had the simultaneous cardiac event?” They said, “Well, we don’t know. We don’t deal with the heart.”

I mean, it was stunning. It was sort of the opposite of what I do, which is always to try to tie things together. Here we have the simultaneous occurrence of a cardiac and a neurological event, and the cardiologists and neurologists weren’t interested in talking to each other to figure out what the underlying pathophysiology was. Staggering, stunning, really.

But also, as I wrote in the book and in that excerpt, it’s just a very sad commentary on our Western health system, where people are shunted to one specialist, one subspecialist, and this and that. Most of my patients have been to dozens of doctors, literally dozens, but no one has the whole picture. And if we’re going to help people with chronic illness, we really need to see the whole person, and that’s what that chapter is about. We need to take it all in and see everything that’s happening on a physical level as well as on an emotional and family constellation level, and put all those pieces together, and it takes time.

And thankfully, my patients are heroes, really, because after spending years being ill and getting sometimes real derision from doctors, yeah, it’s sad, finally I can give them a safe space to share all of it and try to make sense out of it. Just that is really healing for patients, to have someone be able to do that for them.

Kevin Pho: Now, ideally, that person who pulls everything together would be that patient’s primary care physician. And as you know, a lot of primary care physicians, we are on strict time limits. We have to see a certain number of patients per day. We have onerous regulations that we have to abide by. We have burdensome electronic medical records. And you mentioned that when you saw a patient for the first time, it took two to three hours, and a lot of primary care physicians don’t have that luxury. So I guess the question is, how can you reconcile the primary care physician’s job to pull everything together when a lot of them are under time constraints from our health care system?

Daniel Kinderlehrer: I do not have a good answer for that. I mean, I could not do what you do. I could not be a primary care doctor. I couldn’t work in any of these systems where, as you said, it’s sort of mandated and legislated how you can practice and how many patients you have to see. It would drive me nuts. I’m just not cut out for it. My patients are willing to pay out of pocket to see me, and some of them get some reimbursement and some of them don’t. And of course, I bend over backwards to help them along those lines, but I don’t have a good answer for you.

I really think there are a whole lot of things we could do to decrease the big expenses we have in medical care in the United States. Just one is that something like a third of all Medicare expenses are towards the last six months of life. And I think if patients were properly educated on what to expect and what they would want done in any sort of heroic fashion, those expenses would go way down. There are studies that have shown that if doctors took courses on how to order tests in a cost-efficient way, the quality of care does not go down, but the cost of medical care goes way down. I know I’m going tangential now. I think the Western health care system obviously needs a lot of work from a lot of different directions.

Kevin Pho: Now, the patients that you see are among the most complicated. Are there any actionable tips that you could share with your fellow clinicians that you’ve learned over the years that can help us physicians see the whole patient?

Daniel Kinderlehrer: I’m really working in a paradigm of people who have an infectious illness, but it’s a whole lot more complicated than that, and I know how to work really well in that system. It turns out, by the way, that right now I’m very interested in the long COVID, or long hauler, or post-COVID syndrome, because these patients look just like chronic Lyme patients. In fact, I’m certain they have a lot in common, and I’m meeting with people, talking about this, and maybe trying to write some articles about it. I think that those of us who’ve been treating chronic Lyme have a lot to offer to those people who are dealing with this long COVID syndrome.

I think that it’s really, really important that patients have a chance to fill out a long questionnaire that really checks out multiple, multiple symptoms, and then that doctors be able to take the time to do that. I don’t know how to do that for a primary care doctor who’s seeing 40 patients a day. I really just don’t know how to do that.

I would say, in terms of tick-borne infections, it’s important to know that you can get it anywhere in the country. It’s been reported in all 50 states. Of course, it’s worse in New England and the Northwest and the Great Lakes states. Wherever there’s more humidity, that’s where the ticks like to go. But it’s everywhere. It’s everywhere. And if a patient presents with fatigue, impaired cognition, muscle aches, joint pains, and often mood problems, anxiety, depression, and irritability, think that this could be a tick-borne infection.

I’m particularly interested right now in PANS, pediatric acute-onset neuropsychiatric syndrome. These are kids who develop all these mental and behavioral disturbances after a microbial infection, and certainly some tick-borne infections do that. Strep is the best-known, but a lot of viruses, including Epstein-Barr virus. These kids are in terrible shape, with severe OCD and anxiety and syndromes, depression, and they’re often very angry and oppositional and raging. They have impaired cognition, they’re falling behind in school, and they have somatic symptoms. They’re treated as, they’re diagnosed with, bipolar and this and ADHD and that, and it turns out there’s an infection that’s triggering an autoimmune reaction in their brain. They have autoimmune encephalitis, and these are things I wish doctors were more tuned into.

Actually, I’m describing kids, but it happens in adults as well. It’s just that we don’t have an acronym for it yet, although I just had a paper published last week where I proposed an acronym for it. I called it MIANS, microbe-induced autoimmune neuropsychiatric syndrome. So it’s not pediatric, not limited to kids, and it’s not just acute onset. It’s often a stuttering onset and a gradually progressive onset. But there’s a huge amount of neuropsychiatric issues that are associated with organic problems, and it’s important not to just take someone who’s complaining of anxiety and depression and say, “You have a psychiatric problem.” So I’m working with psychiatrists to educate them on how to recognize underlying organic causes for their patients who have these neuropsychiatric complaints.

Kevin Pho: We’re talking to Daniel Kinderlehrer. He’s an internal medicine physician, and he’s the author of the book Recovery From Lyme Disease: The Integrative Medicine Guide to Diagnosing and Treating Tick-Borne Illness. He submitted an excerpt of that book to KevinMD, titled “Our work as physicians and healers is to see the whole patient.” Daniel, occasionally I see these COVID long-haulers, or people who have long-term residual effects from tick-borne illness, in the primary care setting. Now, if you were to give one actionable tip for us in primary care who see the patients that you see, what would that one tip be?

Daniel Kinderlehrer: Most of these patients still have active infection. The designation of post-treatment Lyme disease syndrome, PTLDS, is a misnomer, because it suggests that they no longer have Lyme disease. They do. I see these people in my office day in and day out with their chronic symptoms. They still are infected with the Lyme bacterium, but they also have co-infections with other infections that they got from tick attachments. And they have chronic inflammatory symptoms that manifest all over the body and can result particularly in endocrinopathies and a lot of neurological symptoms. Arthritis gets the most attention, but it’s the neurological symptoms that cause the most disturbances and impairment.

Kevin Pho: And my final question: What’s your take-home message that you want to leave with the KevinMD audience?

Daniel Kinderlehrer: I guess I want to message people who’ve been suffering from chronic illness that there really is hope, and don’t give up. Ninety percent of my patients get 80 to 100 percent better, and like I said previously, most of them have been sick for years or even decades. So don’t give up. Don’t assume that your doctor has all the answers. Don’t be afraid to be asking questions outside the doctor’s office. Don’t be afraid to read books like mine.

There are other good books out. Even just recently, there’s a book by my colleague Steven Phillips called Chronic, about all the autoimmune problems associated with microbial infections. Another book, by a colleague by the name of Ken Bach, just came out called The Inflamed Brain, about all of the issues that kids have that can manifest with neuropsychiatric problems. Keep asking questions, and don’t give up.

Kevin Pho: Well, thank you so much for sharing your time and insight, and thanks again for being on the show.

Daniel Kinderlehrer: Thanks for having me. Appreciate it.

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