Lyme: Half Million Cases Doctors Ignore

Aaron Hartman and Veronica Porterfield explain why doctors miss half a million Lyme cases: standard tests only catch one 1970s strain of Borrelia, while multiple species circulate. Co-infections like Babesia and Bartonella often go undetected, and chronic Lyme can masquerade as autoimmune disease.
Questions this video answers
"Almost half a million" new cases per year (spoken estimate).
"It cost almost a billion dollars a year" (host's quoted estimate).
About 50% sensitive (guest's spoken estimate).
Virginia, 2013 (guest's statement).
Borrelia burgdorferi sensu stricto (the historical lab strain from the 1970s, as discussed).
Chapters
Welcome back once again to Made for Health. I'm super excited to be here with my friend, colleague Veronica Porterfield. Welcome to our podcast.
So good to be back with you, Dr. Hartman.
Yeah. Veronica is one of the practitioners at our office. She comes from northern Virginia, has a lot of experience in Lyme disease and tick related illnesses. It's a little fortuitous that we are actually talking about that today. I was actually on the phone with a someone from California who just got the diagnosis of Lyme as well as Babesia as well as Bartonella.
Oh, gosh.
And she had a lot of interesting symptoms. Zappy stuff, whitehead. Dizziness, a POTS place told her she had pots. Psychiatrist said she might have some mental health issues because she has horrible anxiety, chronic pain, a bunch of weird stuff. She actually was on the way to Cleveland Clinic, had been to a bunch of other high level clinics in California and no one could figure out what's going on. And then this morning I'm reviewing labs of a patient I've been working with for years whose Lyme was negative three years ago. She's clinically doing great, getting, feeling better, losing weight, but all of her inflammatory markers are still high even though she's feeling better. And this morning her Lyme titers came back positive.
Oh, gosh.
And so I'm excited actually, because she's feeling well.
Okay.
And I feel like she's going to do well with treatment. The first young lady I feel is going to be one of our more difficult patients that we're used to. But that's what we're going to talk about the next three episodes is Lyme disease, Babesia, Bartonella. In preparations for this, I looked up a few statistics. Right now there's almost half a million new cases of Lyme disease in our country every year. Half a million.
Not so many.
Yes. It cost almost a billion dollars a year and lost one work from just L. Not the bees, not other tick tock. This is a big deal. And in general, people aren't talking about. I feel like just the last month or two, a couple famous people came out with the diagnosis of Lyme disease, which when they had their, their Bell's palsy a couple years ago, I was thinking they had Lyme back then actually, and it's really interesting. Why are we missing this? Veronica, what's the deal? You came from a place filled full Lyme and when I came back to Richmond from my time in the military, I was told there was no Lyme disease here in Richmond. Like what's going. Like what's the deal.
I think that's a very layered question, Dr. Harmon. I think there are many levels that create problems with Lyme diagnostics. I think the tests themselves are not super reliable. I think there's some difference of opinion in the medical community which is really confusing for people. There was an article a few years back called the brilliance of Borrelia. I think in 2021 talking about how Lyme can actually or Borrelia can interfere with the innate immune response. So in terms of what we're able to pick up, how sensitive tests are, what we're able to say to patients on so many levels, there are issues with Lyme diagnostics.
And Lyme is the new great imitator.
Absolutely.
You know, and historically syphilis was a great imitator. You get infected, have a little thing pain, a sulcer, a shankroid and then 20 or 30 years later you might have heart disease, you might develop dementia, psych, you might go crazy. There's very famous people that's happened to tuberculosis for a while. Consumption was a great imitator. I mean we, historically we've, you know, people just wasting away and within a box with modern stuff, those have disappeared. But now Lyme is the new great imitator and we're missing the diagnosis, we're under treating it. Why, why is, you know, talk about the difference. And I think a lot of people realize, you know, almost half a million cases a year and that's up, like it's going up and so many people and it's routinely I'm seeing people who I've been seeing for years that they pop. I feel this number's low. Oh absolutely, this number's low. So why is it so hard to diagnose? Is it a system problem, Is it a diagnostic problem? Is a lab problem? You know, is it specialist? Like what? I've already kind of given you a couple things like what's. Why is it such a hard thing for regular practitioners, the regular system to diagnose and yet we see it all the time.
Yeah, that's a great question. So like I was sort of alluding to before and like you just mentioned, I think there are a lot of levels of issue. One issue is that the expected or the kind of standard of care for diagnostics for Lyme involving sort of the two tiered testing with the ELISA test that then kind of reflexes to an immunoblot test is not very sensitive. So it's about 50% sensitive on a good day. I think another issue strangely, and this is kind of coming out of left field. But I think another issue is our approach to Lyme prophylaxis. So we know that if we give somebody 200 milligrams of doxycycline when they've been bitten by a tick, they can seroconvert, they can become seronegative for antibodies. So once you've kind of prophylaxed somebody for Lyme, their test may be negative as a result, which is very confusing. I think another issue with the testing is a lot of times tick foreign illnesses don't live in the blood. So you know, bartonella lives in the skin, Lyme likes to burrow in tissue. And so you may not find in a blood sample, you may not find evidence of tick borne infection even though the person is clearly infected. So there are just a lot of layers to that issue.
Yeah, I think also as well, like the idea of the experts, we have the infectious disease society of America which has their definition of Lyme disease and they only recognize acute Lyme, they don't recognize crack Lyme versus Ilads, which is an international Lyme associated disease society or. Yeah, okay, what's the S stand for? That has a. Totally has a more refined definition. So there's confusion in the system and I think people just. Most of our education occurs in acute care centers. I was at the medical college of Virginia and you only see the most acute things in there. And so a lot of these are outpatient. And so in an inpatient educational system, you're not going to see a. The standard tick borne illness. And so I left my training at one of the top places on the east coast, super busy hospital where two interstates cross 64 and 81, never having seen a case of Lyme, was in the military for three years in Florida where there's actually not a lot of Lyme disease. No Shaw case came back up here and all of a sudden my first case, what did we do? I called the infectious disease doctor locally and their response was we don't take consults, there's none in Richmond and we don't see it. And I was like, okay, this is very circular. You don't take consults and you don't see it, so it doesn't exist. But you don't take consults, so you don't see it and you think it doesn't exist. And so it's almost kind of embedded in the system. You have to look for education outside of your traditional educational system. And then once you get in the weeds and realize it's so common I mean, what are some illnesses that could be that are misdiagnosed, that have a Lyme component to it? We're going to go back. This is going to be fun. What are some things that are misdiagnosed that end up being Lyme disease?
Multiple sclerosis would be an example. ALS might be an example. Dementia might be an example. All kinds of autoimmunity would be an example. Chronic fatigue. Yeah, the list kind of goes on.
Yeah, chronic fatigue. Fibro, long Covid. People will get Covid and it'll reactivate Lyme. You said chronic fatigue. Fiber was another great one. But the idea is that a lot of things, if someone has multiple symptoms that are involving multiple systems, then you have to think a great imitator, of which Lyme is one of the players in that. And you did mention the testing. Briefly. Let's talk about how that makes it difficult because we, we go back and forth a lot on, you know, you know, are we going to do a antibody test? Are we going to do a fish test? Are we going to do a PCR test? What are the different. Okay, so first you have an, you know, an enemy. You'd mentioned the elisa. Then we have a western blot. You mentioned that. And then there's a thing called a fish and a pcr. Like, what's the difference? Like, why do we have these labs? What's the difference between these, These different labs?
I think generally speaking, you can divide testing in terms of what the test is picking up. So if you're looking for antibodies to an infection, that would be a certain kind of group of tests. And if you're looking for evidence of an active infection, that's another group of tests. So that would be like the pcr, FISH test and so forth.
Direct versus indirect testing.
Correct. So one of the issues with the indirect testing, with the antibody testing is. Well, like I said, there are several. One, because of Lyme's effect on the immune system, it can be tricky to rely on antibody tests right out of the gate. It can take some time to develop antibodies. So if you're testing somebody immediately after a tick bite, they're not gonna have antibodies. Obviously, if you are dealing with a person like you were mentioning who might have chronic Lyme, you don't know, like, if you're picking up antibodies, are those old antibodies, are they current antibodies? Is this an active infection? Is this a past infection? Like, so there's some confusion around that. There's confusion around seroconversion. So if a person is given 200 milligrams of doxycycline. Their antibodies might be negative after that, even though they still have Lyme because of the treatment. And another thing that can happen on the antibody side is like I was saying, Lyme can affect innate immune function. So things that you would typically expect in terms of an immune response. I think people are pretty familiar with the fact that IgM antibodies are considered to be kind of recent infection. IgG antibodies are considered to be more representative of a historic infection. Lyme doesn't play by those rules. So some people who have had Lyme disease for a long time may still have IgM antibodies. So when you look at their testing, you might be confused and think, well, this is recent, but actually it's long term. Other people will never develop IgM antibodies, they'll just go directly to IGG antibodies. And so when you look at their testing, you might think, well, this is historic, but it's not active. So on so many levels there's confusion around the testing, the accuracy of testing and actually how to interpret the testing. I think one more thing I'll say about that actually, and you know, this is maybe representative of how unreliable Lyme and other tick borne tests are. In 2013, the Virginia assembly passed a law saying that healthcare providers have to tell people when they're giving lye results that there are some issues with the testing and issues with reliability of testing. So even if you have a negative test, it doesn't necessarily mean that you don't have Lyme. Yeah, that was passed in 2013 and not everybody's aware of that.
I did not know that. Yeah, interesting. So the gist is when you test someone, it's negative by law in Virginia you're supposed to tell them that there.
Are limitations to the test, by the way.
But yet standard of care is to do that exact same testing that insurance pays for. Correct. But they don't pay for the more advanced testing like fish and pcr. That is interesting.
Yeah. So then people are out on their own trying to figure this out and pay for it all.
And there's also the medical legal aspect that rather my training with it, you know, it was hammered in. Patients have to sign a special consent form for Lyme testing that has all these risks and stuff because you can actually get, you can get sued for over treatment, over treatment of Lyme if someone has a bad side effect from the medication because the standard of care is not to do three months of anabox five longer rounds of an box for people that are more difficult to cure, put in remission and so there's a legal liability, which scares lots of physicians away.
Right.
Which is another aspect of this whole thing. Our patients have to sign a actual consent form saying, we're treating Lyme disease. And they get that. This is, you know, we're going. We're outside the box thinking this. We're ahead of the curve on the standard of care. But you have to have people sign that. And that by itself scares practitioners away from even wanting to go down this pathway. I remember when I first started doing functional medicine, there are two things I was never going to do. I was never going to do mold because it's, like, really tricky. It's medical legal, and buildings and landlords. I was never going to do Lyme disease because it's too tricky. And medical legal. And I got sucked in because people. It wouldn't get better. And then you do a Lyme panel or do a service panel, and you're like, my first thing was, can these be this common? They can't be this common. And after, like, seeing it over and over again, I'm like, I guess these are really common. And then you have to get over the fact I can't get down people better. And then who do you refer to? Because, like, there's no one to refer to. So you can either. And just me, being a lifelong learner, I just. I guess I have to learn how to figure out how to do this on my own.
Yeah, it's really tricky. I think I've actually seen less kind of litigation from patients on that regard and more pressure from colleagues. So people who are like, well, these aren't the guidelines, you know, these aren't the IDSA standards. What are you doing? You're practicing dangerous medicine. We're going to report you.
Well, I think also I was every year for my malpractice for our practice here, I have to take a course to our underwriter's way of minimizing risk for them. And this past year, this actually. Literally, Literally, it was about six weeks ago that I finished that. One of the things was in the state of Virginia, they passed another amazing law that any complaint against a provider has to be investigated by the state, by the board of medicine. So. So if you're late for. If you're running historically late, if you call and someone doesn't call you back, you know, like, really just personality things, you know, you're. You're really. You ignore your. Somewhat like one of the exam. One of the examples I gave was people saw a patient coming with an AI. Like, I I think I have these diagnosis. What do you think, doctor? The doctor blows them off. If they complain at the level of the state, the state has to investigate them. And the state board of medicine went from having, you know, a couple dozen complaints a year, 23rd, 2000s. And it was just. And so their point was, like when you get a complaint against you just be very polite and give them a nice historical record and they'll, and because they're so busy, they'll check and move on. But just that fear, like I don't want to get reported to my board of medicine because I might lose my license. All of a sudden there's all these roadblocks to taking care of something that on the low end, half a million people a year are getting right. You know, on the low end. And there's all the people I see that I've been working with for years who I, I, I've checked them multiple times for Lyme. I had one patient we've been working with some mold issues and she had got shingles and then end up getting diagnosed with Parkinson's. And during that process, this was off four year process, she went from Lyme negative, Lyme positive, didn't go outside. And so it's one of those things like this was sitting there and got reactivated. I mentioned earlier on that the labs I got back this morning, exact same situation, except the patient's been just getting better and better and better every year, but her inflammatory markers are still there. So it's so difficult. So that's the reason we're doing this conversation about Lyme, to educate people. So the other thing I want to talk about is the strains of Lyme disease.
Okay.
Like the current testing checks for one lab procured strain from the 70s.
Yeah. What is that? Borrelia burgdorferi. Senso stricta.
Yes. Yeah. And so, but there's 40. Tell us about that. Because I don't think people realize there's multiple strains of this thing. It's not just one strain. And our current testing is for that one strain. Yeah. From at this stage almost 50 years ago.
Right. Yeah. I don't know what to say about that, except that there are many strains of Borrelia. Some are more common in different parts of the world. People go hiking in Europe and think they're on vacation and that they're immune from picking up any kind of illness over there. But people have come back with Borrelia miyamotoi. There's Borrelia burgdorferi, Borrelia fselli. There Are, you know, a dozen strains.
Of lymessi amino a bunch of them, yeah.
And you're right, our traditional testing is just looking for the one strain that, you know, was isolated so many years ago. So that's another limitation of testing.
And so let's shift a little bit because I keep on going back to the person I talked to last time that had Borrelia and Babesia and Bart. How often do they come together? Like that's something I think people don't realize as well that what are the odds if you have Lyme disease, what are the odds that you may have one or two other infections? Is this rare or is it common?
It's pretty common actually. And in fact, where I was working previously where they were focusing on tick borne illness, if you tested positive for one tick borne infection and had any symptoms that were sort of classic or characteristic of another, you're automatically treated for the other because the testing is so notoriously unreliable. And so if there was any smoking gun on the tick borne front then, and there were symptoms of other like, you know, there are classic symptoms of Babesia. For example, shortness of breath would be one, some people develop rib pain, night sweats or other sweats would be kind of classic. So if somebody has Lyme disease and they're also having sweats, then you might think, well, I'm going to go ahead and start treating you for Babesia or Bartonella. Some classic signs or symptoms of bartonella would be random stretch marks. So stretch marks in places that you wouldn't expect, maybe the middle of your back or you know, and sometimes they go away and come back and sometimes they move so weird. Stretch marks would be a sign of Bartonella. Foot pain is a sign of Bartonella. So bladder irritability or like frequency would be another sign of Bartonella. So if somebody shows up positive for any tick borne infection and has symptoms of the others, we just treat clinically.
Yeah. And at first glance that sounds like, okay, that doesn't sound. Why would you just throw antibiotics at people? But everything we've talked about, the lab testing is not super accurate and it's expensive to do T labs or, or hygienics. I mean people sometimes if you're doing the full panel, it might be a couple thousand dollars. Yeah, yeah. And so, but the, the numbers, and I generalize numbers in my brain just so they stick for longer than five seconds. But roughly, if you have Borrelia, roughly 40% of people will have two other infections and roughly about in the mid-60s percent will have one other infection. If they make me get the numbers right? Yes, that's right. Yeah. Yeah. So, so it's like, so it's like 60, 40, you have 40% chance of having three infections, traditional if you have Lyme and roughly a 60% plus or minus chance of having one another if you have Lyme. So all of a sudden if the testing is unreliable and it's negative, but you know, they have Lyme, then it kind of makes clinically, it makes sense intuitively that you probably should treat for these, especially if someone's being treated, especially. And this is where the nuances, if you're treating them for Lyme and they're not getting better.
Right.
Or they keep on relapsing. One thing I actually wrote down when you were talking about some of the lab testing things, you know, sometimes people, when I'll do their general testing, I'll see a chronically elevated IGM level on them and you'll see other immunoglobulin subclasses suppressed, which affects your immune response. And you'll typically, if they've had it for a while, see their natural killer cell suppressed, which are part of your innate immune system. So all of a sudden all this interaction, even with the best testing, it's still problematic. Yeah.
And to your point, I mean if, if we know that Lyme does interfere with immune function and we're relying on immune tests for diagnosing people, it's problematic. I was going to say one other thing about kind of like the percentage of people who might be CO infected. Looking at that kind of from the other side, if somebody does test positive for one of the co infections. So let's say the Lyme testing. One of the other issues with Lyme testing is how to interpret the test. And you know what the CDC says in terms of like this is a positive test for an amino blot or whatever. So complexities around diagnosing Lyme. But if somebody does test positive, for instance for Babesia or for Bartonella, there's a pretty high chance that they'd have Lyme because Lyme is the more common tick borne infection. So that's another kind of can of worms.
Yeah. And then there's other tick borne illnesses as well. There's Francisella, you can have other infections, you can have Epstein bar reactivation, you can have toxoplasma Anaplasma. Yeah. You can have mycoplasma, you can have Chlamydia pneumonia. So when you, you know the term, Dr. Horace refers to this as multiple multiple systemic Inflectious disease. It's like you. They have one, they might have multiple, and. And ultimately it comes down to your immune system, because we know. I think. How. You know, one question people ask me, how long was Lyme disease been around? And there was this cave person they found in the thing. It was Switzerland that was frozen. The ice that evidently had their skull crushed. So someone was chasing them. They had some medicinal mushrooms in a little pack, which was interesting. Again, they died about 5000 BC, but on DA analysis, they had Borrelia in their blood. So we know this has been around for at least 7,000 years. So it's not new. So why are we seeing this problem now? Like, if it's been around for 7,000 plus years, why all of a sudden are we hearing about it?
Like, oh, that's such a good question. And I don't know that I have one answer to it. I think you could probably blame climate change for some of it. There are some conspiracy theorists that think that there were tests done in the 1960s that may be part responsible for other parts of it. We're a lot more mobile now than we were before, traveling to Europe and elsewhere. I mean, and I do wonder. And this. I don't even know if we want to go here. I'll just start to talk, and you can't stop me. Okay, so there is a phenomenon. And, you know, make sure you stick.
Close to your mic because we gotta hear this. Okay if I. Just in case I decide to stop you.
Okay. There is a phenomenon.
And I have no idea where this is going, by the way. So.
Yeah, yeah, so it's exciting. There's a phenomenon. So I'll give you. I'll tell you a story. I had a patient in Northern Virginia who was very sick, and she had Lyme disease. And in the course of her treatment, she was like, you know, I want to have my husband tested because I understand that this could potentially be sexually transmitted. And so the husband feels fine, husband feels great. Husband's healthy as a horse. Well, we test him, and he has, on fish testing, evidence of active infection. So his T labs test was positive for Borrelia. So then the question is, how many people are walking around with Borrelia who feel fine, who aren't sick, but have an infection? And kind of bringing it back to your original question, why are we seeing this now? I wonder if all of the other insults to our immune system right now, whether it's the toxins in our environment, whether it's mold, whether it's 10,000 things our immune systems are also not allowing us to tolerate what we previously could in terms of exposures.
I was thinking it was going to be more controversial than that. Also I was looking for something we could debate, discuss and throw stuff at each other about. And you know that you didn't say anything controversial. Like when you look at one of the things that led to the diagnosis of Lyme in the New England, they were seeing every spring, kids having a seasonal periodic rheumatologic condition where kids would get rheumatism, aches and pains for six weeks and it would go away. And because it was happening every spring, ticks come out. It was assumed to be an arthropod borne illness. Didn't know what it was, but the kids got better. So this is the idea of like kids getting sick and getting better, not a new phenomenon. But even when it popped up and they had the ability to test for it in the 70s, we didn't see it exploding. I think personally, why are we seeing everything? Why are we seeing autoimmune diseases going up? Why are we seeing cancer? In 1900, 1 in 100 people in America would get cancer in their lifetime. In 1990, one in three people, now one in two people will get some form of cancer in their lifetime. Why is that? Autoimmune diseases I mentioned, you know, there was this, they used to be called auto autoimmune horrificus. There was this really old 18, there was this thing, people inflamed, they didn't know it was. And like they pretty much people died. Super rare, super horrible. Now people getting these autoimmune flare, that's more common. Diabetes. OMI When I was in medical school 96 to 2000, I was told I'd never ever see a kid with a type 2 diabetes. They always had to have type 1 if it was a kid.
Right.
That's changed. And so pediatric cancers are on the rise. So I kind of. There's something in the air, something in the water, something in the food. And depending on which camp you're in, you might pick a steak, you might pick the glyphosate roundup steak, you might pick the vaccine steak, you might pick the processed food steak. You might pick in the ground that stake you might pick, you might pick the mold state, you know, like it's all mold. It's all, you know, I think it's everything. Yeah, I think it's literally food, water and air in the environment. That's just the insults. You know, the average female puts over 200 chemicals on her body every day before she leaves the home. And now we're learning that these toxins can actually be passed transplantally to the offspring, which is terrifying. And now we're, I mean, this is old information. We actually saw, we actually saw the data for during Mao's China, we had tens of millions of people dying from starvation or in the Dutch bread famines, where middle class, upper middle class women got pregnant, went into austerity and no food. The kids that were born, the women that survived, if they went back to the middle class, up a middle class living, they had more cardiovascular disease, more obesity. The people who were poor and stayed poor made their kids, had no increased risk. So this weird epigenetic transgeneration, like you were an egg in your mom when she was in your grandmother's uterus and the environment in your grandmother actually affected your mom's genes and your genes so much so. And actually it's really cool way our bodies adapt to the environment. That's supposed to be a positive thing, right? That in the wrong situation becomes a negative thing. And so the question is, how much is this just building up generation to generation chemicals, epigenetic expression. The term for this is transgenerational epigenetics. It's everything. And so some people will be like, I'm a mold expert or a lamb expert or a detox expert or whatever, but hormone expert, which is another big thing. But really, I like what Dr. Jinsky says. I'm just a human expert. Human, because you have to be able to do it all, really. And I think it's, you know, I was expecting something more controversial than that. I'm a little disappointed, Brock. I was hoping for something, you know, more like, you know, like, I can't believe she said that on the podcast. That's more like. Yeah, yeah.
Well, that's just another layer of confusion.
No, so autoimmune disease. I did write down here the auto being masquerade. According to Dr. Yehudis Schoenfeld's work, who's potentially one of the top, if not top immunologists in the world at the University of Tel Aviv, if you have an autoimmune disease, you have to have of four things. Genetic predisposition, which I routinely tell people I don't care about because I can't change it. A triggering event, which I really do care about because that sets up people's path. Leaky gut, which was considered Houy 30 years ago. Now it's cutting edge medicine and a chronic infection. And I feel like people like, forget that all the time someone comes in with with my one of my early Hashimoto's patients ended up being a patient with who got the diagnosis of Lyme disease. Eventually ended up being mold exposure. Growing up, went to college hiking the Shenandoah Valley, got ticked by, presented to a doctor with Hashimoto's actually had Lyme didn't get better and actually the mold was interplay and so the autoimmune masquerade. Why don't you talk about that a little bit about how we when we get these diagnoses. Great. You have rheumatoid. Go to the rheumatologist, you've got Hashimoto's. Go to the endocrinologist. You got inflamed for a bowel disease. Go to the the GI doctor. One of my SIBO patients with gut issues with EoE actually found to have Lyme and treating his lyme made a 90% of his symptoms go away. Why don't you talk about the masquerade which goes partly to the whole great. The autoimmune masquerade how this is going up. There's over 120 different autoimmune diseases now. But yet when someone has autoimmune disease, we just kind of like go to your specialist and have a good day. Like talk about that briefly.
Gosh, where to start with that? Well, because we know that now. Are you asking specifically like how do the chronic infections kind of manifest as autoimmunity?
Or maybe the question is talking about because people, this is for educational purposes for people like if someone talk through maybe that someone comes in the rheumatoid or Hashimoto's hypothyroidism or ibs, but they have a positive anti Sarcomyces antibody or whatever how they should be looking for infections. It's overlooked almost universally by our healthcare system and by our solid specialty field, but yet we know the science behind it. So why don't you just kind of delve into that from something to help patients.
Sure. Okay. So from kind of a 10,000 foot view as we were talking about before, a lot of the symptoms of these chronic infections actually look like symptoms of other illnesses. So people who are having weird inexplicable issues and particularly when they come up against problems with treatment or when they come up against like let's say treatment refractory treatment, refractory multiple sclerosis treatment, refractory NY or Z, but you're still having symptoms and you're going kind of along a conventional path and Seeing your specialist like you should, I'll give an example. So I did have a patient who had Lyme disease and was diagnosed. So she didn't know it. She was a hiker in the Shenandoah Valley. And, you know, she started to feel not well. Eventually developed, you know, fatigue paralysis, not complete paralysis of the left side of her face, but like numbness of the left side of her face, like paresthesias in her arms and legs. Just started to feel weird. So eventually ended up at a neurology office and was diagnosed ultimately after an MRI of the brain with multiple sclerosis. So she had the kind of typical findings on MRI and started treatment with a disease modifying therapy and actually got worse, much worse on that treatment. So if you're doing any modulation of the immune system as like a starting point, if you're doing kind of any immune suppression and your symptoms flare, that could be a sign that you have an underlying infection because the infection is given an opportunity and the immune system is no longer keeping it at bay. The other thing that can happen with long term infections or I mean, I guess even acute infections, but typically we see it with more chronic infections, a part of the immune system called the mast cell can be activated. And when that happens, you can show up with a bunch of antibodies that are not necessarily true antibodies for tissue destruction or target tissue destruction, but the immune system starts producing kind of these mimicking antibodies. And so people get confused, like, do I have Hashimoto's? Do I have rheumatoid? Like, what do I have? So it ends up being a little bit of a ball of wax, if you will.
It's a conundrum. Yeah, it's a mishmash. And so that's. But if some point is, if someone has autoimmune disease, you look for an infection to your point. I remember working with a child with inflammatory bowel disease, and when he got treated, same thing, his symptoms got worse. And I was reading a research article on pediac, this is specifically for pediatric inflammatory bowel disease, particularly Crohn's, that 30% of kids recalcitrant to standard therapy had a CMV, which is a virus colitis, which, you know, I'm like, well, why aren't we doing CMV panels in all these kids? Right. So it's just having the knowledge to know that there can be other things going on. If someone's not responding to treatment, you need to reinvestigate, not hunker down.
Right. And I think kind of taking a step even back from that always when you have autoimmunity, kind of to your earlier point, I think you should be asking what else is going on? Like what lay the groundwork? What kind of was a triggering event? You know, are there other things that are kind of contributing? So infections are definitely one of them.
Yeah. And we're not going to go down the mast cell activation syndrome rabbit hole, but that's another multi system, multi symptom entity that has some kind of trigger phenomena. Lots of things can trigger it. Mold, chemicals, a whole bunch of things. But infections in Lyme are one of the common triggers for those things. And the last thing I want to mention is hypermobility. Early on, while I was digging into the hypermobility thing, learning that potentially 20% of the population is hypermobile, 20% of the pediatric population's hypermobile. 15%. This is. There's actually literature on this. 12 to 15% of the college population is hypermobile. And then an adult is just eds and that's like, you know, one and some, like the thousand, some rare thing. I'm like, where did all these hypermobile people go? And the reality is they're living normal lives. But right if you're a little loosey goosey Lyme and some of these things love low oxygen tension tissues, and if your joints and connective tissues are a little loosey goosey, float, microcirculation is not quite as good. And when you get these, these infections, they can mask and hang out for longer. They're more difficult to treat. So even my physical exam and seeing if someone is hypermobile, do their fingers bend back? Do their elbows go back? What's their neck feel like? Can I pull their skin out? You can't. You know, how long, how long are their arms?
Yeah.
Your lungs greater than 1.02 times your height. Right. Do your knees go back and then. Non, non, bait and score. Questions. Can you, like, you ever had your hip dislocate, shoulder dislocate, vertebrae, ribs? You know, I consider those secondary kind of things. If you have that, then you're more likely to have this occult kind of infection that's going to be a little more difficult to treat. No. By the way, you might have mast cell and autoimmune and gut issues and dysautonomia. So all of a sudden it's like, it's fun, but it's a conundrum.
Well, the other thing with that is that borrelia likes to eat the hyaluronic acid in joints. And so we know that that infection can actually let's say cause or worsen hypermobility. So it's a little bit of a loop.
It is a little loop. Yeah. And then there's a whole mast cell thing which there's some research suggesting the hypermobility, the causation may be mast cell stuff which can get worse with triggers. So there's. It's, it's. It's a conundrum. It's a lot of different things. So. So let's stop there. This is the first, you know, one of three. Okay. Lyme disease, it's a lot. Tick borne illness is a lot. Next we want to talk take a little deeper dive into the. So what.
Okay.
All right. Because educate people what this is about, why testing's difficult, why there's controversy out there. I think people understand now. So next what's you know, how, how what should people do? What's the next step? So I think that will be our next conversation.
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It.
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