Neurological Lyme And Its Effects with Dr. Rana Mafee

Mimi MacLean:
Hi, Dr. Mafee. I’m so happy to have you on today. Thank you for your time. I decided to talk to you about neurological Lyme because I actually haven’t really spoken to many doctors about this to date and I do think it affects a lot of Lyme patients. So thank you for coming on. And so my first question is when you see a patient that comes to you that they think that they have Lyme, I guess that’s a good question to start with is when they come to you, do they already know they have Lyme or are they coming to you for neurological issues and you realize they have Lyme?

Rana Mafee:
More often the latter. I’m not well-known as specifically just a Lyme specialist. So I’m known as an integrative neurologist. So a lot of people with chronic neurological issues will come to see me because they’re looking for sort of a different angle or a different spin that they haven’t seen taken by their traditional neurologist. So most oftentimes it is because I’m detecting it. I’m looking for it and detecting it. But certainly, there are people that know they have it. They’ve already been diagnosed with it and also happen to have chronic neurological issues who come to see me as well.

Mimi MacLean:
And what would you say the correlation is between someone with neurological issues and Lyme? Is it a high percentage or-

Rana Mafee:
It’s hard to say. I mean, data-wise or… I don’t have any good data on that. It would all just be sort of based on my experience. The more I’ve been looking for Lyme, the more I’ve been trying to sort that piece out, the more I’m realizing that Lyme can be an issue for a lot of people with, for example, multiple sclerosis or Alzheimer’s disease or other neurodegenerative diseases. It’s not to say that I find it in every case or highly suspect it in every single case, but it’s hard for me to kind of give a hard number on that.

Mimi MacLean:
Yeah. With my doctor that I went to for my hypothermia treatment, he treats a lot of ALS patients, and he was saying that almost 100% of his patients had Lyme and they didn’t even know it. It just progressed. But he just happened to just do Lyme tests on them before they went into treatment.

Mimi MacLean:
So I think a lot of people, they don’t realize the correlation. I think a lot of times there’s been… At least cases I have read where they thought they had MS. And really it was Lyme. So just kind of to bring awareness to people that Lyme does cause neurological issues and whatnot. What do you think you do differently for helping patients that a typical neurologist does?

Rana Mafee:
That’s a really good question. So I tell people that they’re… Because I do certainly have people that come that are clueless and they’re like, “Well, I just heard that I should come and see you. I don’t really know what exactly you do that’s different.” So I always open with… I practice using a different GPS system and I kind of view health differently than traditional neurologists or any traditional specialists for that matter, because we’re kind of trained to think in silos and to think about just focusing in our one little area. So I practice differently because I’m thinking about all the different nodes of health and I’m thinking about how things like your hormones, your gut, detox, all the different aspects of your health are impacting your manifestation of disease. So that’s mainly how I’m different. We’re looking for root causes. We’re looking for drivers, triggers, mediators of disease. So I think that that boat just gets missed. It’s just not in the training in Western medical training, unfortunately.

Mimi MacLean:
No, it’s true. I was having a conversation that actually my gardener has Parkinson’s. And because I’ve been affected by neurological Lyme, he was speaking. We started talking and he said, “Oh, I had coffee today. And so causes my symptoms to trigger more.” And I said to him, “Yeah, same with me. If I have to do something, all of a sudden my symptoms become worse.” So I would love for you to just kind of talk about things that maybe you suggest to your patients, like what could be triggers, if it’s food, if it’s stress. Are there things that you kind of tell people you need to kind of get in order to help reduce your symptoms?

Rana Mafee:
Yeah. So patient, when they come for the first time, I’m always having a conversation about food and nutrition because that’s so foundational and important. In most chronic neurodegenerative sorts of diseases, I’m almost always kind of trying to convince people to eat as many vegetables as they can, very high quality fats, good quality proteins, organic food as much as possible, and to really, really watch carbohydrate intake.

Rana Mafee:
There’s a lot of data now showing that sugar is not good for the brain. Carbohydrates, gluten in particular, is not good for the neurological system in general. It can be a hard sell, but it can make a huge difference for some people just to take that step and to make changes from eating their standard American diet to kind of making these huge, huge lifestyle changes. So that’s always a primary thing that I’m talking to people about.

Rana Mafee:
I’m always often in the first visit talking about detox and toxins in your environment because in neurodegenerative disease in general, I think two of the biggest players or factors that get missed by traditional neurologists or Western-trained doctors in general, think two of the biggest kind of buckets I tell people is toxins. So toxins can be toxic. And then also infections. So stealth infections. I mean, that does include Lyme, but it includes a lot of other things. So you could have hidden things in your gut. You could have bacteria that are causing trouble. You can have parasites. You can have different sorts of things that just don’t get detected.

Rana Mafee:
So in neurodegenerative disease, I’m always looking for those things in particular, but as far as counseling people, a lot of times talking to them about detox and giving them resources and telling them how to clean up their environment and starting with clean food, clean water, clean air, and so on. So those are big openers for me, is food, clean up your environment.

Rana Mafee:
And then stress is a huge, huge piece too. So people don’t realize how inflammatory stress really is. I’m guilty myself of not being the best at managing my stress. It’s one of the hardest things to kind of nip in the bud. It really is. I tell people, “You can’t make stress go away. That’s impossible. It’s all about how we perceive it and how we deal with it.” So I’m always talking to people during first visit a little bit about that, giving them some resources, giving them options. Not everybody’s into meditation. So I’m telling people, “There are different things you can do. You can take a bath. You can find a hobby. You can just find something to be in the moment and just kind of get away from it all.” Just little things. Set your alarm on your phone once or twice a day just as a reminder to take time out, do something, take some deep breaths or whatever it may be. So stress is really huge.

Rana Mafee:
And sleep, sleep is so important as a time for the brain to detox, and it’s a time for our immune system to kind of keep itself healthy. So sleep is really, really important. So talking to people about that as well. And then exercise. So moving around and exercise hugely important for almost all aspects of health, but specifically for the brain and the nervous system, I would say too. So always kind of talking to people about that, especially if they’re not accustomed to moving much. Baby steps, whether it’s just taking a five-minute walk to start out with every day and then kind of trying to build up from there. So that’s kind of where I start with people.

Mimi MacLean:
Yeah, no, that’s great advice. Sometimes it’s so much harder than you think, especially the exercising when your body hurts or you’re not able to. It’s hard to break that habit or to get into that habit, I should say.

Mimi MacLean:
So I have a question. Why do you think some people with Lyme progress into neurological Lyme versus others? Is there something that’s you’re saying in their gut biome that’s causing that or… My husband’s had Lyme and he hasn’t had neurological issues, whereas mine went right into neurological issues. Is there something that someone can do to prevent… If they find out they have Lyme, is there something that they can do to kind of prevent it from going neurologically?

Rana Mafee:
Yeah. It’s hard to say and predict who will or will not. Everybody has a different constitution and everybody has a different genetic makeup and vulnerabilities. And so the environment is going to affect people in different ways because of that. So some people get Lyme and get their initial course of antibiotics and they’re fine and they never have issues with it. Right? And some people struggle.

Rana Mafee:
So I think it’s that subset of people in my mind… This is not scientifically based, but in my mind, it’s that subset of people that have a little more of an imbalanced immune kind of checks and balances system that are more vulnerable to having Lyme invade the brain and nervous tissue. Specifically in the brain, you’ll get a lot of inflammation and damage of these group of cells called the microglia, which are the resident immune cells that kind of patrol the environment. They kind of go crazy. They’re meant to respond to pathogens and damage, but then once they see something like Lyme and somebody who doesn’t have a very balanced immune checks and balances system, they kind of go haywire, and as a result, end up causing a lot of damage along the way.

Rana Mafee:
So I think it’s just people with those constitutions that have less immune regulation that are more prone to.

Mimi MacLean:
Yeah. Is there some kind of test to determine how severely damaged from neurological perspective? If it’s a CAT scan or an MRI, or is it just more of a clinical analysis?

Rana Mafee:
There’s no one specific test, and I kind of take it case-by-case depending on what sorts of diagnoses they have, how they’re manifesting illness. MRIs of the brain can certainly be helpful. So for example, somebody with multiple sclerosis who happens to also have Lyme disease, MRIs are very helpful because they show us if you still have progression of that pathology from what’s happening. So that is helpful. If somebody has a lot of peripheral nervous system damage from neuropathy or something like that, there are tests that we can do, like nerve and muscle testing, an EMG test which can be helpful to kind of gauge where you’re at with that illness.

Rana Mafee:
But there’s really no one specific test that I’ll kind of order just to manage every single patient with Lyme. Yeah.

Mimi MacLean:
You know what one of my Lyme doctors did once? And I don’t know if you’ve ever done this with a patient. And it was kind of eyeopening to me because I never happened before. I showed up, and he was a Lyme doctor, and I said to him, “Here’s my binder.” It was the first time I’ve gone to him. “Here’s my binder of all my tests.” He’s like, “No, no, no, I don’t need to do that.” He’s like, “I just need you to walk in a straight line and see if you can do the sobriety test.” And I was like, “What?” And I was like, “I’d never heard that before.” And I was like, “Why would you want me to do that?”

Mimi MacLean:
And he said, “Just do it.” And I was like, “Okay.” And I started… I fell over and I was like, “Oh my God, I’ve never had anybody ask me to do that.” I’m like, “Why did I just fall over?” And he’s like, “Because it’s affected you now neurologically, and I don’t even need to see your Lyme test because now I know you have it.” I just sat there and was crying. I was like, “Oh my God, I never realized I can’t walk in a straight line.” And he’s like, “Yeah, that’s how much it’s progressed.” And that was just very eye-opening to me.

Mimi MacLean:
So I don’t know if you’ve ever done that before for a patient, but that was my experience with my Lyme doctor with neurological testing.

Rana Mafee:
As a matter of fact, I do every single patient because that’s just part of my training as a neurologist. So we almost always do that because we’re looking for signs of what are called cerebellar dysfunction. So there are these parts of the brain called the cerebellum. They sit low, just kind of under the cortex of the brain, and they’re chiefly involved in balance, coordination and balance. So oftentimes people with cerebellar dysfunction won’t be able to pass the sobriety test.

Rana Mafee:
But there are other reasons besides that for people to not perform well on that test as well. So obviously, if they have weakness, [crosstalk 00:15:46] them. If they have sensory imbalance, that could certainly throw off their proprioception and throw them off as well. So it is a little bit of a sort of assessment of more specifically, like I said, the cerebellar… We call it cerebellar ataxia, but can also kind of suggest just dysfunction in other areas of the [crosstalk 00:16:10].

Mimi MacLean:
Yeah. Is there anything that you would recommend generically to everybody? Obviously without seeing any patients, right? You’re not giving a medical advice. But is there anything besides what you were talking about before with the water, sleeping, stress, food, is there anything that you would say, “Okay, everyone should make sure like, hey, their vitamin D’s high,” or fish oil, something that… What protects your nervous system as far as supplements?

Rana Mafee:
Sure. So as far as general things, I would say the number one and number two are probably fish oil, high quality fish oil. And sometimes, you need somebody trained to kind of test your levels, what are called omega levels and to see if you need more of the EPA or the DHA or GLA, these sorts of things to kind of get a sense of that.

Rana Mafee:
But most high-quality fish oil supplements are pretty balanced in terms of their EPA and DHA. So I’m always recommending somewhere generally between one and two grams a day at least for a fish oil of combined EPA and DHA. And then also vitamin D, hugely important. Vitamin D, we’re finding functions more like a hormone than a vitamin, and it has so many roles to play, and certainly so important for the nervous system, the immune system. So vitamin D almost invariably. I mean, I live in Chicago, and I mean, I’ll have patients over the summer tell me like, “Well, I’m out all the time. I’m in the sun. I go to the lake. I go to the beach,” and sure enough, their vitamin D levels are low. So almost always… I myself take vitamin D year-round. But again, you have to work with somebody who’s checking your levels because there’s a U curve with vitamin D and you don’t want to be too high or too low.

Mimi MacLean:
And what level do you usually like? Because I think the standard level that you see is lower than what really you should be. Right? Don’t they recommend normally… I don’t even know the numbers, but usually it’s higher you want.

Rana Mafee:
Yeah. So most labs will say anything above 30 is considered adequate. In my mind, I like to see people at least at 50. Somewhere between 50 and 70 is my rule.

Mimi MacLean:
Right. Good. Well, this has been great. Is there anything you would like to close on or anything that we haven’t covered as far as neurological diseases, Lyme issues that you see on a day-to-day basis?

Rana Mafee:
I guess the only other thing I would want to kind of add is just to let people know that I think it’s not as well-known yet, unfortunately, that there’s a lot more to be investigated and a lot more interventions that can be done for people with chronic neurological disease in general. I’d like to get the word out there that if you can find somebody trained in integrative or functional medicine, there’s a lot of hope out there.

Rana Mafee:
The standard way that we practice medicine is to name it, blame it, tame it, which essentially means you assess and find out what the disease is, oftentimes when it’s really, really late into the game. And then you assign a drug or a procedure or a surgery, which definitely have their roles. I still use medicines quite often. But the whole notion of, “Well, what caused it? What triggered it? What’s mediating it?” That gets missed. So I just want to put it out there that there is hope for people and that if you find somebody trained in this style of practice, I think you can have a lot more success in your treatment, on your treatment path.

Mimi MacLean:
No, it’s true. I like how you brought up the point about the root cause because that is important. It’s like, “What is causing it?” Right? Because you could be treating it with whatever drug that they’re recommending, but if there’s a root cause, it’s still like inside you say, say it’s some toxin, it’s still causing it. Right? So then you’re fighting that versus like, “Let’s try to remove it somehow if we can, if it’s possible.”

Mimi MacLean:
Going back to my gardener example, he’s like, “I still think to this day I was a Marine,” and he’s like, “I was exposed to all this stuff when I was in the Marines, these chemicals and shots, and I was kind of like a Guinea pig.” And he goes, “I honestly think that’s what caused it.” And I was like, “Oh,” because he’s a gardener, I’m like, “Well, maybe it’s Lyme because you’ve been bitten and you’ve had Lyme so much. Maybe that too.” At least he was thinking about it. He’s like, “I know it’s this. What was causing this? And what can I be doing?”

Rana Mafee:
Yep. Absolutely. Yeah.

Mimi MacLean:
Well, thank you very much. I really appreciate your time. And for anybody who’s listening, again, you can find Dr. Mafee at Case Integrative Health in Chicago.

Rana Mafee:
Correct.

Mimi MacLean:
Yeah. Perfect. Awesome. Thank you so much.