You Can Have Lyme for Years Before Symptoms Start

Welcome back once again to another episode of Made for Health. I'm here today with Veronica Porterfield, one of the practitioners in our office. And we're excited to kind of start talking about a little deeper Lyme disease, but doing it from a different perspective. It's finally— Lyme disease is one of those things that's finally come to national attention. Literally, really smart, fancy people at the White House sat down in January to talk about the epidemic. There's something like 400,000 new cases a year. 30,000 get diagnosed. There's more cases of Lyme disease in our country every year than breast cancer. And it's often overlooked. And so what we're going to do the next 3 to 4 podcasts is take a little deep dive just to educate you more about Lyme disease, about what's going on, to be aware. Um, and Veronica actually had a brilliant idea a few minutes ago because we're entering Lyme tick season actually here, um, April and May in Virginia to actually do some small things to help people protect themselves. So we want to talk about, um, first is just look at Lyme disease from a different perspective. Mystery illnesses, things that pop up that are misdiagnosed that we've both seen and how we actually figured out what was going on. Just to give you a flavor for it, this is not like you get a tick bite, you get a red bullseye, you missed it. You can literally have chronic illnesses for decades. It gets missed and it's just I won't say just, but it's something that can respond to basic treatment if caught early enough, or sometimes more advanced stuff depending. So let's start talking about Lyme disease as a great imitator. You know, when I did my medical training, we talked about tuberculosis and syphilis historically being the great imitators because they could both look like anything. And we don't really see a whole lot of tuberculosis anymore. I did have a case last year, strangely enough. Syphilis, I haven't seen that since my university days, you know, but there are other ones. And Lyme is a spirochete. It actually is a similar family to syphilis. And so talk about that briefly and why do you think misdiagnosis happens so much? Actually, maybe give a little background because people might be saying, why is he talking to Veronica about— like you actually were at a very prestigious, well-known clinic with one of the, like the grandfathers or forefathers or whatever, one of the first people who actually did Lyme for decades. Can you just like tell us, give us that background first and then just, you know, and then just kind of tell us, you know, talk about the great imitator and why misdiagnosis is so common.

Yeah. So I had an opportunity to work with Sam Shore in Northern Virginia for a period of time. And actually he came to become a tick-borne illness specialist through his focus on chronic fatigue and fibromyalgia for years. And he discovered, you know, a decade in, as he was starting to test people for Lyme disease, that many of his fibromyalgia patients, many of his chronic fatigue patients actually had Lyme disease and responded to treatment. So, I mean, if you want to talk about like the great imitators, he was having all these patients with these other diagnoses coming to him and discovering that actually what was wrong with them was Lyme.

What's kind of funny with Dr. Shore as well, because my mother-in-law actually had a tick-borne illness. And got admitted to a hospital in Northern Virginia, saw his brother and their cardiologist. Yeah. And then got, yeah. Cuz they thought she had, you know, it's so funny. It's so funny actually. You know, I don't know how old she was, but they were, they were like, oh, it's like, you know, infective endocarditis, which is something drug users get. And it's like, this is not a drug user at all, but they just were looking over like the most common thing, which fever of unknown origin. You always gotta look for a tick-borne illness. And so actually both of them were on the case in Northern Virginia. So, oh, interesting. Yeah, I know. So it's small world, right? Small world. So the great— how's it— talk about it being a great imitator and why misdiagnosis is so common.

I think largely it has to do with the way that Lyme presents. So, and for a variety of reasons, which I know we're going to dive into a little bit more in this podcast, but Lyme can present as fatigue. Lyme can present as pain. Lyme can present as swollen joints. Lyme can present as neurological deficits. Lyme can present as so many different things that if, especially in a medical culture where we're so focused on specializing, people will look through their lens and say, oh, you have swollen joints, they're painful, maybe you have rheumatoid arthritis, or you've got cognitive deficits or deficiencies, or you've got things going on neurologically, maybe you have multiple sclerosis or, you know, any number of things. And so we do limit ourselves when we kind of take chronic or even acute Lyme off the table and we're looking through a specialty or specialist lens at people. We don't necessarily think of systemic illness.

Yeah. It's interesting cuz Northern Virginia, as you know, is a highly specialized area where literally you go to your primary doctor for runny nose. And if you have chest pain, they send you to the cardiologist. If you have a joint pain, they send you to the orthopedist or rheumatologist based on your complaints. And, you know, my training was you do it all. Like literally you don't refer out only when like you have no idea what's going on, you can't figure it out, or it's above, it's above your, your pay grade, basically. You don't refer it out because you only have 10 minutes. And it's interesting how I did, I did dermatology training while I was in the Air Force through University of South Florida, which at that point in time was the top or one of the top dermatology training places in the country. And they took away— the dermatologist did all their skin cancer. So I did the training. I was like, I, for the Air Force base, I started taking care of basal and squamous cell cancer. Came up here to Virginia when I got out of the military and like everybody's doing Mohs surgery on these little small spots, which For those who don't know, Mohs surgery is literally you can have a little spot on your nose and lose like half your face. It's just crazy. And they're like, well, I mean, the cure is like 93% versus 97%. Like, if the basal cell comes back, you can always do a little more. Like, and so it's really funny how there where they were overwhelmed with skin cancer, they realized we're going to do the most important, most needed stuff. You come up here where, I mean, there's skin cancer, but not quite. As big of a deal. All of a sudden everybody sees a specialist, sees the uber specialist and gets these massive surgeries for things that you could have done a topical cryotherapy, little Aldara, Effudex, which are topical chemo creams. And that takes care of 90+ percent of these superficial skin cancers. So it's interesting how the super subspecialization may be a factor.

Yeah.

And it's overlooking something that's, you know, over 400,000 cases a year.

It's crazy.

It's crazy.

Well, I would love to hear from you actually some examples of patients that you've had that have been diagnosed with one thing and then you've discovered actually that it's Lyme. Can you share a couple?

Absolutely. I, I've got a couple I wanna share. I want you to share a couple of yours as well. One of 'em actually was early on when we first put my shingle up here for Richmond and Grayman Functional Medicine. And it was a male who had in his mid-30s who came to me who had gone to the University of Virginia, which is a very prestigious place here. Was having weird symptoms, numbness, tingling, urinary issues, numb, just all kinds of weird stuff, zingers, brain fog. And they did an MRI and he had like some white lesions on his brain MRI, did a spinal tap and like, you have multiple sclerosis. So started him on a biologic and he did horrible, horrible reactions to the biologic, horrible response, felt terrible. They tried 2 on him and then someone in the community just did a random Lyme test on him that was positive, but it was 3 bands, not, you know, 5 bands or whatever. And so he ended up, he wanted another view, so he came to see me and I'm like, well, you have Lyme, probably narrow Lyme. We need that treated. And that's, that's, that's a PICC line. That's not, he actually didn't have a PICC line. He had a cath put in. And that's a month of Rocephin. Every day for a month. After doing that, 80% of all the symptoms were gone. Now he still had a bunch of other weird neurological stuff. Come to find out, he also, the house he was living in was, had tons of mold. So once we actually remediated his house, he ended up getting like all the symptoms to go away. But the thing was, is like initially, and it was, the takeaways for me were, here's a male with MS in his 30s. It's usually women. And the 30s is not a typical, that's not a spike typically for men. So it was atypical. And one of the things I talk about commonly is in order to have an autoimmune disease, you have to have 4 things: genetic predisposition, which I can't do anything about, a triggering, a triggering event, which is super important to figure that out, a chronic infection, and increased gastrointestinal permeability or leaky gut. And so anybody with any autoimmune disease, I'm like, what's the infection? I'm looking and looking and looking. It's there somewhere. What's the triggering event? And it's amazing how many times you find these, but for this guy, it wasn't— he failed 2 biologics and ended up being Lyme.

Well, I— can I say one thing about that?

Absolutely.

And this is just to kind of put a bug in people's ears who may be wondering, like, how could I tell if I have MS? When you said that he did terrible on a biologic, that's usually an indicator that there's something else going on. Commonly, people who have Lyme disease, when they're treated with a steroid or treated with any sort of immune suppressant, are going to feel much worse. Not 100% of the time, but a large, a large part of the time. So if you're suppressing the immune system when you have an infection, a person's going to feel worse. So that's interesting.

What it— and to jump off your point, that, that any autoimmune diagnosis that you get the treatment and you do horribly with, need to reevaluate. I had a young child, 14 or 15, who was diagnosed with inflammatory bowel disease. Same thing, did horrible with, with biologics. And it's interesting because when I took a little dive in the literature, 30% of ischemic colitis— I'm sorry, of inflammatory bowel disease kids actually will have a chronic CMV. It's actually a CMV colitis. It's a viral colitis. And those patients typically do horrible on treatments, on the standard immunosuppressant treatments. And so, you know, a third of all kids with inflammatory bowel disease, that's a significant number. Why weren't they automatically screened for like an Epstein-Barr herpes infection panel. We have an infection panel we do here, but that happens all the time. And that's a great example of, it's not just Lyme, it's any kind of autoimmune disease. You got to think about why are you getting worse or not responding? Is something else going on? Autoimmune diseases ultimately are house fires. Well, let me rephrase that. It's not house fire, it's a room fire. It's a room in your bathroom. We call that rheumatoid arthritis. It's a fire in your kitchen. We call that, you know, Hashimoto's. It's a fire in your attic. We call that multiple sclerosis. But the same things will cause these fires. They just look different if it's a different part of the body being attacked. We're going to do this back and forth a little to kind of, you know, I'm sorry. I'm sure you have many examples. Why don't you share one of your cases where, you know, you came to you and, oh my gosh, what is this? And it ended up being Lyme.

So I was thinking about this in preparation for this conversation. And I mean, I've had a case of somebody with, who was diagnosed with multiple sclerosis. I've had A lot of different people show up in a lot of different ways, but I think one very common thing that people don't think about is with the diagnosis of fibromyalgia. So 40-year-old female who had been diagnosed 10 years before with fibromyalgia was kind of just always in pain and tired, and nobody had thought to check for an infection. And I say this because it's so common. And interestingly, often rheumatologists aren't thinking about checking for Lyme.

Well, I have someone I'm working with right now who's in her 70s, had fibrous since her 30s, multiple specialists. You know, our initial intake, it was one of those things like, you know, seeing us, people have to fill out a lot of paperwork. It's 20 pages. You have to apply. It's a little bit of a slog to get in because we, you know, it's just—

It's a screening process.

It's a screening process, high-demand screening process. So if you're out there, it's a little, you know, don't give up, but fill your paperwork out, sign up, all that kind of stuff. But she went through all that. We did her intake and it was like she had 6-banded Lyme. And it was like within 3 months, like 80, 70% of her symptoms were gone. A year later she was like, and even now we're like 3 years in the process cuz she like wants to keep on getting other things better. But she's always thinking like, is this gonna come back? And it's such a funny thing cuz I'm like, we figured it out and we treated you. But because she was so sick for such a long period of time, she still has this medical trauma. Like, but Dr. Hartman, what if it comes back again? Like, well then we'll— or if something else happens? Like, well then we'll just figure something else out. But it's really interesting. That's really interesting about Dr. Shore going— coming to the Lyme disease from the fibromyalgia. All my fibro patients, chronic pain patients get checked for Lyme and Babesia and Bartonella and Epstein-Barr and herpes. And we have a pretty robust infection panel that we do. Give it, um, I've, I've two other cases I want to share.

Well, why don't you share one and then I'll jump in.

Well, I'm going to share two actually that kind of run off each other. One was actually before I even started, became functional. I was just a regular good old-fashioned doctor. And, uh, it was a nurse came in who had Bell's palsy and she had had it return twice in the last year. And, you know, I knew that there's a subset of the population can actually have a, um, a herpes infection. So I gave her Valtrex. It seemed to get better, but it came back. And she's from the country in Virginia. So I have no idea why I ordered the Lyme titer on her, but it was positive. And so that, that stuck in my head. It was positive. We treated her and the Bell's palsy went away and never came back. I've not read about this in the literature, but I'm getting ready to share. And I'm curious if you've heard about this. So fast forward, maybe 4 or 5 years ago, and I'm working with a patient who happens to be a vet. And, Working on lots of issues and one day suddenly she gets severe sciatica, horrible sciatic pain, horrible back pain. She actually has a foot drop.

Okay. Yes.

So she actually has a foot drop. So a neurological, like, oh my gosh, this is a surg— and I'm trained, this is a surgical emergency. There was some delay with the orthopedic surgeon. They did the MRI, showed a slipped disc. She was going to get the surgery thing. And I, every time I see her, I'm always like, I have no idea why I did this. But I think the one previous patient like just flashed in my head. I'm like, I mean, it's a, it's a singular mononeuropathy. I mean, could they be related? Let me just order a Lyme panel. She had Lyme disease, gave her doxy, and her, her foot drop, her radiculopathy and back pain went away. And she was literally getting scheduled for back surgery. And so, and why did I think about that? I always look when things like that happen, I always look back at the charts to kind of figure out what was the thing that kind of triggered my, triggered my gestalt or my, whatever my, my, as Dr. Janssens says, his spidey sense, right? You know, or intuition or whatever you want to call it. But just thinking if someone has an acute radicular nerve pain, it might be something else besides. And the reality is, is in her age range, 40% of women will have a slipped disc on MRI. They have no symptoms. So all of a sudden, MRI with a slipped disc doesn't necessarily mean that's the cause. And so, um, when you looked back, what was it?

What was it that triggered that thought for you?

I could never figure it out. I'm not, I'm just like, And I've had multiple conversations with her and she's like, I don't know why you did the heart rhythm. I wish I knew why, but it's one of those things where, you know, there's a mantra I pray when I come to work every day to see what can't be seen, hear what can't be heard, diagnose what can't be diagnosed. And it's amazing how many times things just pop in my head, which is in like, I look back and I'm like, how'd that? And it also keeps, it also scares me a little bit because it's literally, literally these little like voices speak to you and you're like, let me check the lamptower. Let me, Let me check your house for mold or whatever. Let me do a, like, check them for hypermobility. Right. And all of a sudden you're like, oh, this is, these are all things.

Right.

So what did the radiculopathy thing trigger in your head? Because you know, not even the foot drop.

I've seen that before with acute Lyme.

Yeah. Okay, cool. Yep. So I had that. That was my first one. It's actually my only one to date. So do you have another case you'd like to, of a mystery, something that came in that was this but really wasn't? It was something.

Well, a couple of things and I'm going to make them hopefully a little bit generalizable. So a case of somebody who came in in July with flu-like symptoms, like summer flu, summer flu, should always check for Lyme. If somebody has this weird, seems like a viral illness, fever, whatever, and they're like, I don't know why I'm having these symptoms in July, it's like, well, got to check for Lyme. So, and yes, in fact it was acute Lyme. So summer flu, Lyme until proven otherwise. And then a case of somebody who came in with all kinds of random weird symptoms that had been evaluated by multiple specialists like zaps in their face, like tingling in their feet, like random things. And they'd had MRIs, it had all kinds of like testing, and it was all normal. So they had been told by multiple specialists, there's nothing wrong with you, there's nothing wrong with you, there's nothing wrong with you, there's nothing wrong with you. And actually they had Lyme disease. So I think that kind of case is remarkable for what it's not. It hasn't been diagnosed as multiple sclerosis. It hasn't been diagnosed as something else. And there's definitely something wrong, but nobody was able to find it.

Yeah, yeah. Um, I will give you a little bit of pushback on the summer flu thing.

Sure.

Um, I'm not testing them for Lyme disease.

Okay.

I'm just treating them.

Oh, fair.

I'm just treating them. It's— this is Virginia.

Yeah.

Um, I've had so many people come in primary care, you know, good old-fashioned days. Oh, I was hiking the Appalachian Trail, now I'm aching and I got 101 fever. No respiratory tract symptoms.

Yeah, just treat them 100%.

No, I have a fever. It's myalgia. It's, it's like flu season. You come in during flu and we, we've done a, my clinical research company did lots of flu trials and literally during flu season. Okay. Someone comes in with constitutional symptoms, aches and pains, respiratory tract symptoms, congestion, and a temperature during, and, and if you look at like according to the, um, I think it's the CDC puts out the map, the state map. Yeah. If you look at it, it's endemic in your area. That clinical diagnosis of flu is more accurate than the swab.

Fair. Yep.

So that when we're doing our clinical trials for this, for this flu test, it was actually not as— it was actually not azoxynide, an oral antiviral that got published in— that got published in The Lancet as a medication for anti— treating flu. So that was an NIH-sponsored trial. It was so good in that level that they're like, we don't want swabs. That they would culture them and we get that stuff back like 3 months later, see if, you know, to verify stuff. But the point is, is like if it's in season, the right place, it's endemic, you know, many, many times you don't need— and then if you catch them too early, the Lyme testing could be negative.

Negative.

Yeah.

We're going to talk about that.

You got to take 4 to 6 weeks. You know, sometimes I'm like, you come in, I'm not waiting that long. I'm going to—

Oh, 100%. I would start treating for sure. So it's Lyme until proven otherwise, even if the person doesn't remember having a tick bite.

Yeah. Well, again, summer flu without respiratory symptoms. It's an endemic area, which is basically anywhere on the East. I mean, how far down is it going now? Is it North Carolina now?

Well, so it's all over the country now.

When you look at the maps, is it everywhere?

The CDC map?

Yeah.

I don't know.

I haven't looked at that for a while.

I mean, the ILADS map is like all over the country.

Oh, this map is red everywhere, even like in Colorado?

I don't know about If it's red, it's just possible anywhere.

So let's share 2 more cases. Can you share one? I'll share one of something that came in, looked to be whatever, and actually ended up being Lyme disease.

Why don't you go first?

Let me go first. I had a patient who actually, um, this is actually an interesting complex patient who, um, still patient, seen him for 10+ years, came in. He actually presented with weight loss, hypothyroidism, and Hashimoto's. So his Hashimoto's is a thyroid autoimmune illness for those who don't know what that is. And his thyroid antibodies, TPO, were sky high. TSH was like 12, 15. He lost a lot of weight too, which is more hyper, not hypo. Felt horrible, terrible, you know, and You know, so that's cool. Let's start you on thyroid medication. But he didn't feel better. Like got his TSH spun out at 1, fixed his numbers, but still felt horrible. Still was losing weight. Still had brain fog. Still just, still like had all the symptoms of an acute, well, not acute, someone with autoimmune thyroiditis. Not, I shouldn't say that. Someone with an autoimmune disease who's clinically low thyroid. And, um, Again, I don't know what, you know, autoimmune disease, it's gotta be an infection. So did the panels and he actually was positive for Epstein-Barr and Lyme and Borrelia and Lyme, but started treating his Lyme disease and all of a sudden a lot of symptoms started getting better. His weight loss stopped, but he didn't get all the way better.

Okay.

He got like 65 to 70% better. He wasn't getting, he wasn't continually getting worse. Month after month, which was what was going on even after we treated his hypothyroidism. And that was the point in time I was actually starting to get in. I was doing things I didn't want to do. Like I always said I'd never get into Lyme disease because I don't want to, it's too complicated and too controversial. I'm not going to do that. And then realize it's everywhere and if I want to take care of people, I had to. And then the other thing I said I'd never do was mold because it's too complicated. I don't want to deal with it. And we're like in the mold universe, capital of the universe or whatever. I feel like every place is like the mold capital.

It seems like, you know, I started practicing in Virginia. I thought it was Virginia. And then I practiced for a while in Pennsylvania and it feels like it's also Pennsylvania.

So if you're from Austin, there's tons of mold in Austin, you know? So it's like, and actually in Arizona, Phoenix, Arizona, which is in the desert, there's mold there, but it presents differently. And you also have other aerosolized toxins as well as pollutants that play into that picture. So anyway, so figured out This guy actually had chronic inflammatory response syndrome. So it was this weird compilation of— and come to find out his childhood house he grew up in was mold-ridden. His dad had some issues, his mom had some issues, and he was actually fine in college. He actually played college soccer at one of the top, actually at that point in time, the top college university in the country. Wow. So he was exposed to mold his whole childhood, went to university, which had lots of mold, University of Virginia. I don't know what you're supposed to say. Anyway, University of Virginia, competed at that super high level for 4 years, got a tick bite, got Hashimoto's. And then that's when the mold stuff that was sitting there kind of came in. Then we had to deal with all this mold stuff. And that's when he actually turned the corner is when we started doing, removing him from the environment and doing a lot of SIRS mold detox stuff.

Yeah, that makes sense.

But it's a lot of our Lyme people have, it's not just the tick-borne thing. It's, they'll have other things going on, whether it's nutrient deficiencies or other nuances that make their story uniquely difficult.

Yeah. And in fact, I think we share a patient that's very, I mean, would be an example of that. Um, who's had Epstein-Barr, young man, Epstein-Barr, Lyme disease. And every time something pops up for him and he feels terrible, it's like, what exactly are we dealing with? You know, are we dealing with the Epstein-Barr right now? Oh nope. We're dealing with the Lyme disease, treat Lyme disease. He feels better, but it seems like he's also exposed to mold.

Yes, he's in a school right now that's super moldy. So, and yeah, I know you're talking about it. So, but doing great otherwise. So, so the point is, is that I think with Lyme, so to close this first episode out of this topic is Lyme can look like a lot of different things. I'm sure we'll, you're talking about this a little later on. Just because you weren't bit by a tick. Just because you didn't see the red bullseye rash, just because you didn't grow up in a tick endemic, endemic area, whatever that means, doesn't mean it can't be Lyme disease.

100%.

And it can, and it can actually, let me, another case I want to share, and it can pop its head up anytime, anywhere, even in the middle of the winter. I had one patient who in hindsight, she probably had EDS, which was hypermobile, was in a very stressful relationship. And, um, she would actually, it was actually, this happened to her twice in the middle of wintertime when she was having like fights with her spouse. She would actually break out in these bullseye rashes all over her body.

Wow.

That would respond and she, her Lyme testing would be positive. And this is January in the middle of winter. She was doxy for 4 weeks. 'Cause that's all I knew to do back then. It would go away, which was more than 2 weeks. And then this happened twice, no tick bite. But so the point is like it actually was, it was in her body hibernating away. And when she, her immune system would get suppressed for her by massive life stressors. Yeah. And she was in a very, very stressful relationship. It was abusive. And so she had lots of stuff going on, stress suppressing immune system. So the point is it can pop up. You can be sitting there for decades and you have no idea and it just pops up one day because of a car accident or a COVID infection, COVID infection, pneumonia, flu infection, reactivation of Epstein-Barr, that then the Lyme pops its head up. So it can be— and we see this all the time, all the time, all the time, 100%. So I think that's one of my common things. You got to make sure you're looking out for it. What— and thinking of all these Lyme, are there any other things you'd like to drop in there for people to think about? Like it can always be Lyme disease, I guess the great masquerader, the great imitator. It can always be Lyme. Yeah.

Right, right.

100 years ago it could always be syphilis and tuberculosis. Now it can always be Lyme.

Yeah. I mean, that's always the case. And for people who are listening who maybe don't have access to somebody who's going to be digging into labs as deeply as we do, if you go and ask for a Lyme test, and I know that we're going to be talking about this.

Oh, good point.

It— you may find yourself like faced with a person who's saying like, you don't have Lyme based on this LabCorp, you know, test, or based on this antibody, like clearly you don't have Lyme disease. So I think the one thing that I would say about all of that is Lyme can look like a lot of different things. And pay attention to the episode where we talk about testing because that's a big kind of a nuance too that's really important.

If you don't do the right test, it's gonna be hard to find.

100%.

Yeah. And if you do the standard of care test, you'll miss it half the time.

And there's a reason for that, which we'll talk about.

Oh, I'm intrigued. Let's find out. Anyway, hopefully this information is helpful to y'all. We will continue next episode. Please, if this is useful, like, share, subscribe. That's how we get this information out there. And we're going to keep on talking about Lyme disease because it's a big thing. Over 400,000 cases a year. That's— when I read that, that was just—

off my blank.

Yeah. So take care. We'll talk to you soon.