Lyme Testing Misses More Than Most People Realize – Why Diagnosis Remains One of the Biggest Challenges in Lyme Disease with Veronica Porterfield | Lyme Disease | E153

And the fact of the matter is many clinicians don't want to find Lyme because they don't want to be the ones responsible for treating it or being stuck in this either because they don't know or because of the political aspects of it. So finding somebody who's ready and willing to walk with you through that is probably the best thing.

Welcome back once again to Made for Health. And we're finishing up our series talking about some of the nuances of Lyme disease. And today we'll talk about why we can't catch it. Why is it so hard to diagnose Lyme disease? Yes, you can look at symptoms, but why is the testing so bad or so good or so different? Or— so we're going to kind of go to take a little deep dive into that because this is one of the probably more difficult parts for people to wrap their brain around just because there's so many different tests. And I went to my doctor and they ordered this test and it was negative, but you ordered this test and it was positive, but you know, it gets a little complicated. So let's talk about, first of all, Veronica, like why are there so many different tests? Why do we need 15 to 20 or whatever the number is different tests for such a basic thing? Like what did, why is that?

Oh, well, I wanna answer that question and I also just wanna highlight something that we talked about not last time, like 5 minutes ago, but the last time we did a Lyme podcast, we talked about how unreliable testing is and what's kind of like even been legislated by the state of Virginia in terms of what clinicians are allowed to tell their patients about their status based on test results. So do you want to refresh our memory on that?

Why don't you refresh my memory of that? Cause I'm not sure I remember the Virginia thing. I'm still, I'm stuck in another thing with the states. Tell me after you, right? I'm a little frustrated about it.

So, okay. So in 2013, the General Assembly of Virginia passed a law that said you cannot tell a clinician, cannot tell a patient that they don't have Lyme disease if they get a negative test result because the tests are so unreliable. So all you can tell somebody is you had a negative test result. You can't say you don't have Lyme disease. And that's because of the unreliability of the tests.

Okay. So that's an important data point, 2013, state of Virginia. And usually I tell people if the go— if the government's telling you something, they're usually like 50 years behind the 8-ball or whatever. But if the test is negative, it's illegal for a physician in the state of Virginia to tell their patient they don't have Lyme disease. Because the testing is so bad. And that is the Commonwealth of Virginia saying that, not Aaron Hartman, Veronica Poorfield, ILADS, CDSA. That's pretty interesting. Yeah. That's how bad the testing is.

So that's the starting point. And then I think one of the issues with testing is what we were talking about in the last podcast, which is pleomorphism, right? Like that it can be really hard to catch Lyme because it's not always in an active form. It can be hard to catch Lyme also because of the types of testing that we do. So if we're looking for antibodies, because Lyme hijacks in some ways, which we didn't talk about last time extensively, but Lyme can sort of hijack the immune system, or if you get prophylaxis of 200 milligrams of doxycycline once, it can change your kind of the way that your immune system looks relative to Lyme. So because of a lot of factors involving immune function, how Lyme impacts immune function, how certain treatments impact immune function and the testing itself, it can be hard to catch Lyme.

Well, one of the things that's assuming it's the testing is assuming that your immune system is working correctly, right? So you get exposed to a bacteria or virus or whatever, and there's your innate and adaptive immune system. So part of that has these things called antigen-presenting cells. So they're little Pac-Man that gobble up stuff, eat something and take a little sliver of it off and present it. So you'll have cytotoxic T cells, you'll have dendritic cells, whatever cells will eat or find this infected cell, eat it up, and they take a little small piece and they flip it out and show it to your B cells. And the B cells will walk up and attach to it. And there have to be all the right cytokines and other things. There's all these little markers that actually will make the two glue together basically. And then, they'll start making antibodies. And then, that one B cell will migrate to another place in your body and activate a different kind of B cell that makes plasma cells that then mass produce this kind, so it's, it requires like multiple steps to work. And if any piece of that part isn't quite working, you won't get the end result, which is an antibody that then we can test for. And that's what we use. So when you look at antibodies only, the assumption is all these steps in your immune system are working appropriately, which is part of the issue with just standard antibody testing. You know, we haven't mentioned this statistic yet, but half of all people who are later found to have Lyme disease let me rephrase this. 50% of people whose testing is initially negative on the initial antibody tests are later found to have— they're positive. The first test was negative, right? Right. And so that just tells me that you're wrong half the time. That's great for, you know, playing baseball and horrible for flying planes, right? If you're right half the time, you know, it's not really good. And so, so there's the Western blot test. Okay, great. It's a more sensitive test, but you only do that According to the Infectious Disease Society of America, if the first antibody test was positive, was positive, right? So if it's negative, they don't want you doing the more sensitive test. Only if it's positive. Well, that's weird.

Well, so this is interesting. So when it comes to those labs like LabCorp and Quest testing, there is a bias which is different than the sort of specialty testing that we do through other labs. And the bias is towards specificity. So they don't wanna get false positives. They're okay with a bunch of false negatives. So that's the bias with the standard testing versus specialty labs, which have a bias towards sensitivity. They're okay with some false positives. They just don't wanna miss anybody who's got it. Does that make sense? Yeah. So those are very different lenses when you're talking about, you know, actually like a screening test or looking for this in a population.

And that's also Talking about the Western blot testing that we do through LabCorp and Quest as well, like they are going to be— the amplification, so to speak, is such that there will be more likely to— they don't want false positives. There'll be a false negative, which means you have it, but the test is negative.

Which is also why they eliminate— well, it's not why, but they're fine eliminating some of the Lyme-specific bands from the Western blot, like band 31. And we can talk about why they do that and all that, but They would much rather leave that band out than potentially catch somebody who maybe was one of the very few people who was ever vaccinated against Lyme.

Yeah. And had that. Yeah. So that's an interesting way to think about it. Cause on the flip side, we'll talk about a little later on the fancy testing. You get a positive test and we've talked about this before we started recording and it's like, is it a true positive?

Right.

Meaning does the person have Lyme disease?

Right.

Not just pieces or specks of Lyme in their body, right? Which is not quite the same thing. So another nuance to talk about is the difference between, let's talk about Western. So big picture now, let's just talk about Western blot testing, LabCorp versus Quest versus fancy IgeneX. They're all the same test, right? Explain to me.

So LabCorp and Quest don't include band 31. So they, let's, do you want to talk about what the bands are in the first place?

So what happens with bands is they basically take different pieces of the Borrelia, whether it's a flagella, the cell capsule, or nuclear material, and they get this a bunch of different antibodies. 'Cause your body will make antibodies to different parts of, of the, the Borrelia.

Yeah. The antigens.

Yeah.

And 41 is a very common one that, um, is, comes positive a lot when it's actually a false positive because you can have lupus and have a positive 41. You can have Epstein-Barr. Or other infections have a positive 41. So what happens is the way to help— they help not get in that quandary of getting false positives, which is it's the test is positive, you don't have it. We kind of add in these bands of different parts of the Borrelia burgdorferi, the Lyme thing. And so that's where the bands come from. And so it's since the same idea, the antibodies, you buy these antibodies to this, but it's making antibodies to the flagella or the nucleomaterial or the capsid or whatever. Those of you who are familiar with Epstein-Barr testing know that's the exact same thing we do with Epstein-Barr where you have antibodies and you have to have 3 to 4 positive for someone to have Epstein-Barr reactivation versus 1 or 2. That's just the normal immune response. So it gets a little nuanced, but the point is, is that in order to try to make a more accurate diagnosis, we now will look at antibodies to different parts of the Lyme that gives us these Western blot bands.

Exactly. So as you said, each of those bands represents a different protein, like a different Borrelia burgdorferi protein, and There are some proteins that are specific to Borrelia and some that are not. So we've talked about there are certain bands that are considered Lyme-specific. So bands 23 to 25, band 31, 34, 39, 83 to 93, those are Borrelia-specific bands. I think 23, 25, 31, 34, 39 all represent outer surface proteins of Borrelia. So no other microbe would have those proteins. So if you have antibodies to any of those proteins, so if any of those bands is positive, that means that your body at some point has seen Borrelia burgdorferi. Does that make sense? Where, like you were saying, band 41 is a flagellar protein. There are a lot of microbes with flagella. So if you have that band positive, it could come— that could be an antibody to anything with a flagellum.

And something that just in this, just to make things more complicated, cuz that's what we like doing here. Chronic inflammatory response syndrome world, which is the mold world. We realize that people that have their innate immune system overreactive, can actually start to throw off sparks. Yeah, they can make these mimicking antibodies. So you can have an ANA, an antiphospholipid antibody syndrome, or positive gliadin for celiac. And actually they're false positives. It's just the fire is so big that your body's making these other things. And the same thing can happen in the infectious disease world as well. So it's something that we know about in different arenas, but that can also complicate the testing, like, is this true positive or false positive, which also makes tracking symptoms ridiculously important.

But back to your original question. So you have an immunoblot through LabCorp or Quest. They leave out band 31. Go ahead.

Is it just 31? I thought there's two bands.

31 and 34, I think. Which is because there was a Lyme vaccine that used that protein, right? Like that outer surface protein as the antigen in the vaccine to kind of develop a response. Now I don't actually have numbers on how many people got vaccinated, how long ago that vaccine— I mean, it's been a while.

It was before I started doing medicine.

But I feel like, I mean, it would be real simple to just ask your patient if they'd ever had a Lyme vaccine. You know what I mean? Like you could just ask.

I've never ever known anybody to have it.

Me either. So having said that, looking at IgeneX, you might say, well, okay, IgeneX also offers an immunoblot. It looks very similar to this other Western blot. Why am I going to pay $230 to have that done? And IgeneX's immunoblot does include bands 31 and 34, and they've amplified the test so that it's more sensitive than the LabCorp or the Quest immunoblot.

And Quest has done that similar to LabCorp. So Quest is actually more sensitive than LabCorp, and IgeneX is more sensitive than Quest.

Yeah.

And so it's now it's even more complicated. So if you— this happens to me unfortunately way too much— we order a lab to go to LabCorp somewhere, they get it done and comes back and then I'm comparing with the Quest lab and it's like, oh, they're not quite the same. And that's just an issue. They, they, when these things light up, these veins light up, they fluoresce, it's fluorescent. And so LabCorp has just chosen to make it, you know, again, to your point, they don't want to have false positives. So they just said, well, it has to be so bright before we say it's positive. And Quest has said, no, we'll let it be less bright to be positive. And then what iGenics does is go, we're actually gonna scale it +1, +2, +3, and also scale it down. So we'll see when just faint, and sometimes we're not quite sure, we'll say IND for indeterminate and let the clinician make the decision. And so all of a sudden we're talking about the exact same test from 3 different places that have exist— can have potentially on the same person, 3 exact different results.

Results, right. And this doesn't even begin to touch on the complexity of IgM versus IgG and what that means. And I will just say this as a summary of that. Something that I learned from Dr. Shore was the immune response to Borrelia is not what you would anticipate. It's rarely classic. So the idea that somebody's going to initially make IgM antibodies and then after a certain, you know, 2 or 3 weeks, they're going to convert to IgG antibodies and then they're going to, you know, sometimes people never convert. Sometimes people will never convert from IgM to IgG. Sometimes people make IgG before they make IgM. Like you can see almost anything on these tests with a Borrelia infection. So for what that's worth, it's not predictable.

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There's also a thing with class switching. Some people, like your chronic infection, can be an issue. You don't class switch, so you don't go from the Ms to the Gs. And so they come with— you say it's acute, it's like, no, but you've been feeling this, you've been sick for what, 5 years, 10 years? This is chronic and you're not class switching. And the thing about that is, is that if the typical test you're looking at, you, when you look at the IgM and IgG tests, you have way more IgG bands that are being looked at than IgG, than IgM. If you're not doing that class switching, which is where you're looking at most stuff, guess what? You might miss it if you're not doing that. So again, the nuance of the test, you know, is it 100% reliable? Right.

You know, and from my perspective, even though according to LabCorp, Quest, CDC guidelines, you need 2 out of 3 IgMs, 5 IgG bands positive to be a positive test. If any one of those IgM or IgG Lyme-specific bands that we mentioned earlier is positive, even though I'm not necessarily diagnosing Lyme, it certainly is suggestive of Lyme.

Yeah, highly suggestive. And then it's also like you might have one, like a 21 IgM, but then like a 41 IgG. And say a 53 and a 91. So it's only 3 and only 1, but it's 4 different bands are lighting up. So also it's like, I also look at, are they different parts of it lighting up? Right. And just, you know, if you have a 41 and a 41, is that 2? That's 1, right? But if you have like a 21 and a 41, that's a little different. So that's something else to think about, particularly if your patients that are presenting atypically, which for us is most of them. So that's a standard test. So someone comes in now, I routinely start with the Quest Labs because it's paid for by insurance. And if they have 5 positive bands, we're done. If you have no bands and then, well, I mean, that's the strength of them is they want to make sure they're not. So maybe you don't have anything, maybe who knows, but you have 3 bands. So what do we do now? So if that happens to you and you think a person has Lyme, what's the next test you would order? Or maybe you talk about the next class of tests that we kind of looked at.

Well, we have a bunch of different options with specialty tests. So if you have a high suspicion, but all the bands are negative on LabCorp or Quest, then I might suggest an IgeneX immunoblot, which is more sensitive. So that would tell me if you've ever been exposed, and that's best for somebody who's never had a prior known Lyme infection. Does that make sense? But if somebody's had Lyme and been treated for Lyme before, and we're asking ourselves the question, is this more of a chronic Lyme situation or is this a reactivation or like a flare? Like, what is this? Then I might consider a FISH test instead.

So fluorescent in situ hybridization, that is a fancy thing. What does that even mean?

So that test is basically— so each lab that does that test will develop a probe, and that's like a DNA marker of Borrelia burgdorferi in a tissue sample. So they're looking at your blood under a darkfield microscope with that probe in it, and anything, any DNA that's in your tissue sample or your blood sample that has that DNA in it that it's looking for will light up like fluorescent yellow. So you'll see little specks in the blood.

Yeah. And so it, I think the point that it's very sensitive. Yeah. So you can, and you talked about a case before we started recording where it was a husband and a wife where the wife had Lyme, super sick, lots of symptoms. Her test was positive. Husband had no symptoms, felt great, and his FISH was positive. And the question is, okay, we've alluded to this before, like she has Lyme disease, he has the Borrelia in his system, but it's not doing anything. So what's the best thing in his case? And so the point with that is FISH is very, very sensitive. So you don't want to be doing it on people that are asymptomatic, that you're not, it's, they haven't had Lyme. You're not, you know, you don't want to do it in people that you're not, they don't have elevated Horowitz score because it might come back positive in someone who has no symptoms, who feels fine. Who just has Lyme put away. And I'm kind of curious.

I'm not—

we talked about this before. I've not read this number anywhere before. Unfortunately, I have to rely on my veterinarian friends and patients for this kind of data. When I talk with my veterinary friends, they tell me that where I live here in Richmond, that 25% of all dogs in Chesterfield County test positive for Lyme. And they can have no symptoms whatsoever. If they don't, the vets don't treat them. So my question is, well, You know, people who take their dogs, all the good people who take their dogs to vets, they're usually indoor dogs, which mean, and my dog, you know, drops off ticks in my house all the time and have to make, be super careful with it. So all of a sudden that 25% or all those dog owners being exposed to Lyme disease on a routine basis.

Oh gosh. One of the things that I ask new patients about their exposures is whether they sleep with a pet in the bed. I feel like that is a huge source of exposure for all kinds of tick-borne stuff.

Especially for kids and adults. If you have an animal in your house, but especially kids, that's probably where my son's gotten some of his bites from, is from our dogs.

Yeah.

Yeah. But the point is, is that this is very, very common and I have not read a statistic where it gives, says this many asymptomatic people have, will test positive, FISH positive, whatever, but it's a pretty big number, whatever it is, because this is pretty endemic.

Yeah, I think it's a similar phenomenon. And, you know, we've talked about this before. You might have a family of 4 living in a house and it's a house with water damage and 1 or 2 people are sick and the other 2 people are exposed, but they're not— they don't have SIRS.

Great point. What's your immune system response to what your, your environment? And if it's nothing, then you don't have disease. So you've got FISH testing. We got the— you start with the dot blot. We talked about antibody testing.

Is there any other PCR testing? Yes. Through Vibrant. Well, Vibrant does antibody testing too, but they have some PCR testing and you can also, in fairness, get PCR testing through Quest and through LabCorp, although their PCR testing, honestly, I haven't done.

It's never been positive. I've done it so many times. I've done EBV PCR testing as well. It's never been— I've only had one person have it positive and they were in the hospital for this really crazy illness where her her, her macrophages were actually eating her bone marrow. And one of the, one of the causes actually is Epstein-Barr. And so hers was, her blood was PCR positive.

Yeah.

Yes. So the point is if you're really sick, it should be positive. If you're not really sick, the, the negative PCR, though it's really sensitive, doesn't, doesn't mean a lot.

Yeah. So Vibrant does offer, I think the antibody testing, PCR testing. I'm thinking right now if I've ever seen a PCR positive through Vibrant and I, I haven't, but I have seen— they also kind of grade their antibodies on a spectrum. Yeah. You know.

But it's tricky because I've never ever done a Vibrant test that wasn't— even mine was positive for all kinds of stuff. And I'm like, I feel fine. So I'm just wondering, one of those things, is it just such a sensitive test that what do you do with the results? You know, so PCR, T-Labs does the FISH testing. There are other labs who do that, but as far as technologies, are there any other technologies for diagnosing Lyme?

There's a Nanotrap technology. Okay. I was thinking too, IGeneX has a culture-enhanced PCR. If we're talking about PCR, that's a little bit more sensitive than just a standard PCR. Okay.

And these, all these tests come with a cost.

Yeah, they do.

Significant costs sometimes. Talk about the Nanotrap.

Nanotrap is a urine test. We were talking about one that was originally kind of developed by a scientist here at VCU.

Yes.

Yeah. Or they're working on it now. There's some scientists at George Mason are working on a Nanotrap test. Also, we were talking about the sensitivity of that test. There are other organizations that are in this field that don't acknowledge Nanotrap testing as accurate because it picks up too many positives. It's not reliable. So I don't know what your opinion is on Nanotrap testing.

You know, I, I'm going to cop out on this one and say I have studied under a lot of very smart people in the ILADS and A4M and IFM world, and none of them have been doing nanotraps. So that's a logical fallacy. I understand that for all you, you love you rhetoricians out there. I know it's a, it's a, it's an error of what's the term for that when you basically deference to authority as the logical error. Yeah. So, so I'm going to pull that one just because I don't know if I've been to lots of lectures. I've read lots of stuff. I've never, I've had a few little snippets people talk about, but not had any, you know, Dr. Horowitz hasn't talked a lot, but any, any person who's like been in this for decades use it currently with their— and I could be mistaken with that, but I just feel like it's almost one of those things that's like too sensitive that you pick up and then what do you do with it? You know, because that's the question. We spent a lot of time talking about just LabCorp Quest and Hygenics with antibody testing. So, and that's, these are testing that have been commonly used for decades. So you start talking some of these newer ones, the question is, are, where are they going to fall in the spectrum? And ultimately, you know, you're treating a patient, not a test, which We all learn in medical school, you don't treat the test, you treat the patient. But the point is like, this is very nuanced and very complicated. And so it can, if you haven't studied it and done time to learn about it, you can be easily fooled into thinking people don't have Lyme disease when this mystery illness is popping up as chronic fatigue or fibro or post-concussive syndrome, or, you know, I had one patient with eosinophilic esophagitis, EOE. Ended up having Lyme and we treated his Lyme, his EOE and SIBO went in remission. He's had, and since he's had his EOE and SIBO flare from time to time, I just repeat his Lyme testing, his Lyme treatment, and it all goes back into remission. Yeah. And so I'm not ready for azithromycin being used with standard SIBO treatment. And obviously not with EOE, which is eosinophilic esophagitis. The point being is that it gets a little complicated. Yeah. So it's also, it's also helpful for people to work with someone who can learn with them because that's how I learned. That's how you learn. We better be learning with our patients. So some questions I wrote down, which I feel like we've, you know, why is this missed often? I wrote down training gaps, system issues, disease itself, co-infections, you know, the reason why Lyme is missed often, or these are the major reasons. So let's talk about training. Like I was not trained. I went through 4 years of medical school, 3 years of residency and had no training on this.. It's just, we just don't learn about medical school. I had to go to a specialty place and go. It was actually during my second board certification, right near my third that I actually started learning about this. So it's, it's not, there's just not training on it. System issues.

Well, also to that point, I think it's also a little politicized in medicine and I, I'm always sorry to have these conversations cuz I feel like I'm not on any side of an issue. I'm just on my patient's side, whatever that means or looks like. Um, but it has, it's a politicized issue, unfortunately.

It, it, you know, when I go to lectures of people who've been doing this for decades and they're like, you need to have your patients sign a consent form that states clearly that you realize you're not following all the guidelines. You're not following standard of care. You realize those risks and they have to acknowledge that or you might lose your license. I'm like, whoa, what happened? Like, that's not personally happened to me, but it's happened to enough people that literally you go to conferences and a routine part is you need to have informed consent and sign because you might lose your license. And it's like for giving someone doxycycline for a year that their dermatologist would've given to 'em for acne. Yes. And so there's definitely a political aspect to it that a lot of physicians just say, I'm not going to deal with it. I'm not, it's not worth it.

They don't want to find it because they don't want to be the one who's quarterbacking it.

Yeah, that has to do with the medical legal aspect of things. So, and that's unfortunate. It's not just Lyme.

That's true.

That happens with a lot of things, you know, you know, during the pandemic, you know, the one who must, he who must not be named, you know, I don't know if we can say that word anymore, but I'm just avoiding it. But during the pandemic, right, certain places, if you had said anything controversial, certain states actually passed laws to say you can lose your license. So this doesn't just happen in Lyme and this doesn't happen in pandemic stuff. It happens in a lot of things.

Although with the pandemic, I will say like the phenomenon of long COVID and sort of the attention that that brought to these kind of chronic, like immune activation illnesses, kind of, I don't know if it's happened kind of globally, but I feel like at least in my sphere, people at least are open to considering the possibility of chronic manifestation of Lyme.

So what I'm hearing is there's a silver lining to every cloud. And so the silver lining here is that this accelerated people's recognition of Lyme, because it got reactivated with COVID It's a vaccine-related illness that we've known about for decades. Literally, when I was in the military, one of the things I was over the vaccine clinic and part of what I did is we actually had a vaccine side effect part of where I was the medical director of that in the military. And so, it was something I did. And, one thing you learned about Hep B vaccines and anthrax vaccine because we do lots of vaccines. And so, in the military, it was something that we actually did. And, you get the regular world, they're like, "There are no side effects to vaccines." You're like, Well, there's a textbook called Vaccines and Autoimmunity, like that I've read. Like, so unfortunately bring it back home. It is politicized, but the silver linings to the pandemic cloud would be that this did accelerate people's realization that our system, healthcare system has weaknesses.

And that it is possible to have a chronic immune activation phenomenon that was sparked by a virus, by a bacteria, by, you know, it can happen.

By vaccine, potentially by vaccine. So that would fall into like this training gaps. That would be a system gap. We did talk about insurance, your insurance restrictions on testing. Like it's like $2,000 to $3,000 to do all of the tick-borne illnesses on a Genexx panel. It's not inexpensive. Just the Western blot you're talking about is like $200 and you said $280.

$230 for the IgM and $230 for the IgG. So $460 for both.

So almost $500. Not covered by insurance. So all of a sudden, how many people are going to spend $500 for a test that they've heard me say that's not perfect?

Well, I'm going to tell you, I mean, and this is like not a silver lining. This is just Medicare has a panel that it will cover. So you can just wait until you're 65 and then get all this testing.

Yes. Medicare, Medicare pays for a lot of functional testing that traditional insurances don't.

And that's not a solution, but anyway, it's not—

waiting until you're 65 is not a solution. No. Another silver lining though. We are talking about fear of licensure, the disease itself. You know, we've talked about, you know, so training gaps, system gaps, the disease, you know, it's multi-system, it's variable, the mix of other conditions. I mean, I think we've—

it's polymorphic.

Yeah. The thing we've not talked about, we're not going to go into today that makes this complicated is co-infections.

Oh gosh.

Yeah. That's something we have not. I've, my little tool here, my AI tool that gives me the things to talk about. 'Cause you gotta have things, um, help you. Um, 'cause it's too much. We haven't talked about co-infections. What, what, you might correct the numbers, but, um, what is it? 60% of people with Lyme also have one other co-infection. 40% will have two other co-infections. So 40% of my Lyme patients can have like three infections, not one. Potentially. And then if you have Babesia, that's where you get some of the fevers and weird stuff. And then Bartonella, you get more of the POTS, dysautonomia, neurological symptoms, which a lot of our patients have those. Like touch on that briefly. Like the, that complicates this even more. We, we have not talked about Babesia and Bartonella at all during this time and how, how having that changes the even getting the diagnosis.

Right. And just for the record, those are not particularly reliable tests through LabCorp and Quest either. And clinicians are looking for those even less often. So it's even harder to kind of. Begin to understand that. For me, just in terms of clinical suspicion, I look at certain symptoms and I look at history. So I had a new patient yesterday who had this kind of mystery illness start in March. There were no clear triggers. And then he had a second wave of illness that worsened like in late May, early June. And in the interim, he had adopted a stray cat that had feline HIV, feline leukemia, was missing an eye, had been in a lot of cat fights, was half feral and slept in his bed. And I was like, you know what we're going to be testing for? We're going to definitely be testing for Bartonella. Do you know what I mean? So like, there are some things that you're just like, gosh, if you have a cat, cats are a huge reservoir. I mean, they're the greatest reservoir for Bartonella worldwide. So somebody with a cat who's ever had fleas and sleeps in their bed, I'm like, well, if you're sick, we got to check you.

Yeah. If you have indoor animals, that increases your risk for a lot of different That's right. And people forget that polio and measles and chickenpox, all these actually, those ones, or flu, started in animals, pigs, horses, chickens, and actually transmutated enough to transition to humans, which is one of the reasons why Native American Indians did not have any resistance to these infections because in their culture for however many thousands of years when they over, came over here, part of their culture was not— they didn't have pack animals. Like, it was like the llama and that's it, right? They didn't have like horses and cows and all these kind of pigs. And so they didn't have that immune system built in. So when those things came here, it literally wiped 90% of them out. So like, the point is, is that, you know, having animals in your house does have some— I love my dog. My son, my wife, my kids love our dog. We love our chickens. We got our cow out there. We got our outdoor dog that protects our chickens. Like, we have our cats that keep the rattlesnakes away from our house because they, you eat the mice and they keep the frogs away.

Like, you know, but there's a whole ecosystem out there.

There's ecosystem. Yeah, I get it. But it's, it's, it's, they don't need to sleep in your bed. Yes. But co-infections, it can complicate things. Oh yeah. 100%. And so, and to your point, the traditional, at least I feel like with Quest, I can order a Western blot and get a little better thing to get more accurate. I don't have that with Babesia and Bartonella except by ordering Nigenex or other tests. So. So moving forward, what, what should people do? Okay. We just told people about Lyme and how difficult it is. What, um, what would you say if someone is having weird symptoms or not feeling well or wants to get evaluated for, you know, tick-borne illness, particularly Lyme and co-infections particularly, what would you recommend? Because we, this is complicated and we, you know, we've talked about a lot of things.

Well, a lot of our patients are great advocates for themselves.. And I always am sorry when patients have to do that, when they have to be their own health quarterback, but I feel like, you know, we're in that situation today. So if you don't have access to functional care or to a Lyme literate practitioner of some kind, you could start by asking for an immunoblot through Quest, right? Like a Lyme immunoblot. And many practitioners will say, well, I ordered an antibody. You can say, well, yeah. And do you mind just ordering an immunoblot? Not a reflex to immunoblot, but just the direct immunoblot with IgM, IgG bands. I just like to see if I have any positive bands. If you have any of the Lyme-specific bands show up as positive, then that does become suspicious for Lyme. And then I would find somebody who can help you kind of through that course.

Yeah.

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And if your provider you're working with order that test for you and you throw a ball of read, I've researched, and according to the CDC, half of all people with Lyme disease, their initial antibiotic testing was negative and they still don't budge on that. Then you probably need to find a different partner in healthcare. Cuz yeah.

And the fact of the matter is, like I said, many clinicians don't wanna find Lyme cuz they don't wanna be the ones responsible for treating it or being stuck in this, you know, either because they don't know or because of the political aspects of it. So. Finding somebody who's ready and willing to walk with you through that is probably the best thing.

And we do talk, we have all these resources on our website that can help walk people through this thing. How to Talk to Your Doctors, a series we did, it helps people walk this process. But to bring it back home, you know, people need to, if you're having weird stuff or even in an autoimmune issue, thyroid issues, you know, rheumatoid arthritis, multiple sclerosis, you know, if you have an autoimmune issue, you have to have a chronic infection of some sort. If you haven't had an infection panel done and, you know, many things on the panel, including Toxoplasma and a bunch of weird things, but Epstein-Barr and Lyme are two of the top things that flip positive for us here that people need to realize they can, they can look at those. I feel like that's probably it for Lyme. The point I think of this ultimately is to help people realize that this is complicated. And even though AI is amazing, they need to work with someone who actually has seen hundreds, if not thousands of patients and worked through this. And that's simply a functional practitioner, but even the functional medicine world, let's talk about that. Maybe talk about that briefly. Cause the functional medicine world, let's do this real quick. Sure. You know, I'm a functional practitioner. What does that mean? Does that mean I went to a weekend course? Does that mean I did the 1-week IFMPC, IFMCP? Does that mean I did the whole 2-year certification? Does that mean I did A4M's 2-year certification and then got a board certification? Does that mean that I also did Lyme training? Like, what does it mean? What's, what does it mean if someone's a functional practitioner?

It means a million things as you're alluding to. So, and I've worked in different functional clinics and I think we've talked about one of my prior clinics. So they had a very specific lane and a very sort of protocol-driven lane. It was like, we look at the gut, we might talk about hormones, but we don't like to do hormone replacement therapy. We will optimize health, but it was very. Will focus on your lifestyle. But then there are clinics that are more invested or involved in complex chronic illness. And then there are clinics that are, that welcome everybody, like we'll meet you wherever you are. So I think looking at the training that you're, and we've talked about this too, looking at the training that your providers have had and seeing kind of the breadth of training, but also the fact that there continues to be kind of recent training. Like you were just talking about, you got a personalized medicine certificate, you know, like you are constantly learning and that's the provider that you want.

Yeah, it's— I've lost my train of thought. I was going to say the— if someone is— has done a FRIM training, they'll have initials behind their name. If someone's done the IFM training, they'll have initials behind their name. If someone's done the certification training through Georgetown, got CSRS certified, or has done ILADS and is a Lyme literate physician, usually someone who's done ILADS training, which is actually not very long. It's super short, actually. Like, I got most of my training watching the bazillions of videos they have on their thing. But that means someone's gone through stuff. So when someone's a functional practitioner and they've done the training, they will put it out there. And so people should also look for that. Like, what additional training have you done? If there's like just, I'm a functional person and they have like a personal story that's compelling, but they didn't actually spend the time and the effort. And I tell people, I've spent several hundred thousand dollars on my education after my residency. So it's not inexpensive. And so even among functional practitioners, there aren't a lot who are going to due to the time and the money. And so I really like what Dr. Horowitz says. He is a guy who took the Lyme— he actually, he reverse engineered functional medicine from Lyme disease. And so his 16-point IMSAD model, he started, you know, similar to, I think you were alluding to, you know, you see a Lyme patient, what do you do with it? He was up in, I think New York, one of the epicenters of Lyme disease. And started seeing his patients and then over decades reverse engineered this. He calls it the 16-point IMSAD model. But if you look at it, it's functional medicine. It's like, and it's based on direct causes from the infection and then inflammation. And it's like 16 points and there's a toxin point, there's an all mean point, there's a gut point, there's a trauma stress point. It's interesting how he reverse engineered a whole entire thing that is literally just like A4M, just like IFM, but they've done their, they've told it from a different perspective. And so that was one of the things I really respected and appreciated with what he's done. And so it's like, there are people out there who've figured this out and have created models, but it's taken decades. And so that's where Lyme disease, chronic tick-borne illnesses, mold, mast cell, dysautonomia, POTS, autoimmune issues, gut problems, hypermobility, like these all tend to live together. And require a more complex, more comprehensive system because of— if you're a POTS patient and you just need some fluids and electrolytes, good for you. If you're a mast cell patient and your Claritin and Pepcid does it for you, you'll never come see us, right? If you're a Lyme patient and, you know, 2 weeks of doxy did it for you, you know, good for you, right? We just tend to see people who've— we're their 7th, 8th, 9th, 10th doctor providers. So people looking for someone to work with, they just need to make sure you look for people that have the time, paid their dues, done the training, and focus on education. I feel like a lot of people that are out there who are really keen on this realize that they're busy. They can't take care, you know, we all need more patients. We're so busy, right? You know, but we're doing this to educate people so they can get the help they need. And so the people that are really in the weeds, I think, are at that level. And so those are some things people can look for to find someone to work with.

Yeah, I do think for at least the tick-borne piece, ILADS training is really, really helpful.

It is for no other reason than to learn that there's lots of literature behind it. And sometimes people need 3 to 6 months of antibiotics and learn the nuances behind that. And then the herbal aspect, it's a whole different realm of training.

Well, and to remember, like you were saying earlier, to treat the patient in front of you and not to say, well, I'm obligated to give you 3 weeks of doxycycline. You're done with your 3 weeks, you're done with treatment.

So we hope this was helpful to everybody listening, watching, um, subscribing where you are. And I think that's it. I think we've, talked enough about Lyme. We've done this multiple times. I talk about tick-borne illnesses elsewhere. So this will go into our files and—

And maybe I'll come up with that.

That was a brilliant idea you had.

Yes. The, like, just how to protect yourself as ticks start to come.

And yet that's a great idea. You did have this great idea before we started recording about putting together something for, cause that's, we're getting into tick season here. How do you keep from getting a tick bite?

And then what do you do if you get one and what's the true or not true about, you know, how long it's been attached and what do you need to do?

And So that, that's something. Be great. We got a few more things coming.

Sorry. Okay.

And after those, we're done until someone else asks us to do something again and we'll do it again because that's what we do. So anyway, take care. We'll talk to y'all soon.

My daughter was never supposed to walk, talk, or crawl. And today at 19, she's thriving. And guess what? We ignored every single thing the specialist told us to do.

Hi, I'm Dr.

Aaron Hartman, and I wrote Uncurable: From Hopeless Diagnosis To Defying All Odds, so you don't have to navigate this alone. In it, we share the secrets that she and thousands of my patients have used. Grab the book or Audible wherever books are sold, or you can find it in the link below.