Diagnosing and Treating Lyme Disease

There are few subjects in medicine more controversial than Lyme disease. In this episode, I discuss the issues surrounding the diagnosis and treatment of Lyme with Dr. Sunjya Schweig, a functional medicine physician who specializes in tick-borne illness.

In this episode, we cover:

2:33 How Dr. Sunjya Schweig started treating Lyme Disease
5:29 What is Lyme Disease (and the Controversy Surrounding It)?
12:55 De-mystifying the Testing and Diagnosis of Lyme Disease
24:01 Promising New Lyme Disease Testing Solutions
34:37 What to do if You Think You Have Lyme Disease
38:58 Steps for Preventing Lyme Disease
44:07 What Are Effective Lyme Disease Treatment Options?

Links We Discuss

• Dr. Sunjya Schweig’s Website
• International Lyme and Associated Diseases Society
• Bay Area Lyme Foundation
• Tick-Borne Disease Alliance
• Cure Unknown by Pamela Weintraub
• The Lyme Disease Solution by Dr. Kenneth Singleton
• The Under Our Skin Movie by the LymeLight Foundation

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Full Text Transcript:

Steve Wright:  Hey, everyone.  Welcome to another episode of the Revolution Health Radio Show.  This show is brought to you by ChrisKresser.com, and I’m your host, Steve Wright from SCDLifestyle.com.  Now, with me is integrative medical practitioner and healthy skeptic Chris Kresser.  So Chris, how’s your day going?

Chris Kresser:  It’s great.  Another beautiful day here in California, and I’m really busy these days finishing up the book, which is exciting but time consuming.  And I’m really excited about our guest today.  His name is Dr. Sunjya Schweig, and he is a functional medicine physician out here in California that specializes in the treatment of Lyme disease, which we’ve talked about a few times but haven’t covered in depth.  Sunjya has become also a friend lately, and we’ve had a number of conversations about it personally, and so I thought it would be great to bring him on the show to get the perspective of someone who is kind of on the ground treating Lyme on a daily basis.  So yeah, we’re going to introduce him here in a second, just after the intro.

Steve Wright:  Yeah, I’m pretty excited because I have a number of really close friends who’ve been affected by Lyme disease, and so I’ve seen the devastation that it can cause firsthand.  So I’m excited for this show, and I also just want to let the listeners know that I’m coming to you live right now from Jordan’s closet in Montana, so I’m joining you, Chris, with recording in a closet for the first time.

Chris Kresser:  Awesome.

Steve Wright:  So if the sound quality’s a little off this week or if it’s a little better, I guess we’re going to learn something from this show.

OK, so before we bring on the doctor, I just want to tell everybody who’s listening to this show, if this is your first time listening to the Revolution Health Radio Show, you’re probably going to want to check out what over 30,000 other people have already signed up for.  It’s Chris’ 13-part, free email series called Beyond Paleo.  Now, this email series is Chris’ best tips and tricks for burning fat, boosting energy, and preventing and reversing disease without drugs.  So if this sounds cool, go over to ChrisKresser.com, look for the big red box, and go ahead and put your name and email in that box.  And when you sign up, Chris is going to start sending you those emails right away this week.

OK, Chris, are we ready to bring on our guest?

How Dr. Sunjya Schweig Started Treating Lyme Disease

Chris Kresser:  Let’s do it.  OK, everyone, so I’d like to introduce Sunjya Schweig.  He’s a functional medicine physician here in Northern California, and we’re excited to have him on the show to talk to us a little bit about Lyme disease, which is, as we’ve discussed before, a very controversial topic.  But before we do that, Sunjya, maybe you could just introduce yourself and tell us a little bit about your background, how you got interested in functional medicine, and in particular, how you got involved in treating Lyme disease.

Dr. Sunjya Schweig:  Sure.  Well, first of all, thank you very much for having me on the show.  It’s a pleasure to be here.  My journey into medicine, I was always pretty focused on practicing and learning complementary, alternative, integrative medicine, even from before I went to medical school.  And so when I did enter med school at UC Irvine, I went there specifically because they actually have a growing integrative medicine program and so I was pretty active during medical school with integrative medicine education and designing and leading courses, and I followed that through into residency when I went to UCSF Santa Rosa Family Practice Program.  And I knew the whole time that I really pretty much had to end up practicing integrative medicine, otherwise I wasn’t going to last.  Just from everything I had experienced growing up and prior life experience told me that that was the best way to do it, and combining the integrative alternative side with a good, solid Western science background really made sense, too.  And so through residency I continued to do that allopathic Western medicine route, but whenever I could, I would do electives in integrative medicine and go and precept or shadow integrative doctors in the area, go to conferences, do reading, whatever I could figure out to bring it all together.  And then as soon as I finished residency, I jumped right into working in an integrative medicine practice up on Sonoma County, which I’ve been doing ever since.

And originally, a big part of what got me into looking at and working with Lyme disease was when my wife was diagnosed with it.  In addition, about 6 or 8 months later, we also found out that my stepmother also had Lyme.  And watching them go through their treatment courses with this really pushed me to dive pretty deeply into the research and into the information behind all of it.

What Is Lyme Disease (And the Controversy Surrounding It)?

Chris Kresser:  So let’s just dive in and start talking about this crazy thing called Lyme disease.  As you and I have discussed, Sunjya, and as we’ve talked about on the show, there’s really a broad spectrum of perspectives on Lyme disease.  On the one end of the extreme, you have perhaps the CDC perspective that chronic Lyme is a myth and doesn’t exist, and there’s just an acute infection that happens with Lyme disease.  And they recognize that some people with acute Lyme may have chronic symptoms, but they don’t believe that it’s associated with a continuing Lyme infection.  And then on the other end of the spectrum you have some people, primarily you’ll find them on the Internet, claiming that nearly everyone has chronic Lyme or just about symptom that someone might experience is due to chronic Lyme, and it’s become a little bit of a fad diagnosis in a way.  So let’s maybe just start from the beginning and talk a little bit about what Lyme is and maybe explore it as an organism and just talk about some basics on Lyme, and then we can go into this controversy in a little bit more detail.

Dr. Sunjya Schweig:  Sure.  Yeah, that’s sounds good.  And I think that’s a good frame.  The degree and depth of the controversy that exists in this country is fairly staggering on both sides, so I think that’s definitely a good topic of discussion.  But what is Lyme disease?  In the very specific sense, if we’re talking about Lyme disease, it refers specifically to a bacteria called Borrelia burgdorferi, which is a spirochete bacteria and is transmitted by tick bite, and if you go further into the controversial end of things, there is discussion about other modes of transmission, but the best documented, best known route of transmission is by a tick bite, and usually it’s the black-legged tick, whether it’s the Ixodes scapularis or the Ixodes pacificus.  Scapularis is on the East Coast more, and the pacificus is out here on the West Coast.

Chris Kresser:  Yeah, literally right outside my door!

Dr. Sunjya Schweig:  Yeah.

Chris Kresser:  As we discovered the other day!

Dr. Sunjya Schweig:  That’s right.  So technically Lyme disease refers to the infection with that one spirochete bacteria and its possible sequelae.  And what’s not controversial is that people can get bitten by a tick, they can have transmission of this bacteria, and they can become sick from it in the acute phase.  And it can cause fever, headaches, malaise, flu-like symptoms, migratory joint pain, pain that starts in one knee and then moves to one shoulder and then moves to an elbow and then to a hand or an ankle.  There are very few things that do that other than Lyme disease.  And we’ll talk more, I’m sure, but where the controversy sort of builds is as to whether this bacteria could potentially be passed to somebody and then not necessarily cause a big acute symptom picture but instead lay dormant and then at some time point in the future – and that time point, depending on who you talk to, could be anywhere from a few weeks to a few months, up to 10 or 15 years – it might sort of rear its head and start causing symptoms.

The name “Lyme disease” comes from Lyme, Connecticut, where this syndrome or this disease was first “discovered” really by the advocacy and insistence of parents back there who realized in the late ’70s and early ’80s that there were just way too many people and way too many kids who had this illness.  And so by their persistence and demanding and cajoling, they managed to get an investigation of that with the CDC and various rheumatologists, and this was sort of “discovered.”  I’m using that with quotes because there’s a lot of history behind that that actually contributes to the controversy that we see now, but we can get into that in a little bit.

So that’s specifically Lyme disease.  It is one bacteria.  But I think, in a broader sense, in a societal way, it’s used to kind of talk about something quite a bit broader, which is this general illness syndrome, which also can include what we call co-infections, which are other bacteria or parasites that could possibly have been passed along with that tick bite.  And unfortunately, there were many.  Ticks are pretty much laden with a bunch of different pathogens.  So there are those specific infections, which can be tricky to diagnose properly.  And then there’s sort of this more global decrease of function, like, does it contribute to illnesses like chronic fatigue or fibromyalgia.  When you have some of these infections, it can really take your immune system offline in a lot of significant ways.  And there are some pretty severe increases of autoimmune activation that can occur.  And there’s discussion as to whether it’s also contributing to some pretty major illnesses in our society, such as MS or ALS or maybe even Parkinson’s.  There’s a pretty well-known researcher who is highly reputable who has shown that in a fairly high percentage of Alzheimer’s patients you can isolate the Borrelia burgdorferi spirochete from the amyloid plaque lesions in their brains.  So it’s a pretty big web that this thing might be casting, and it gets really difficult to tease out, like you mentioned, what’s real, what’s going on, and what’s the actual scope of this issue.

Chris Kresser:  Yeah.  Just to emphasize this again, there really is no part of this discussion that isn’t controversial, whether you’re talking about the diagnostic procedures, which we can get into in a little bit, whether you’re talking about the symptoms and then the co-infections and diagnosing them and what they’re capable of causing.

Dr. Sunjya Schweig:  Right.

De-Mystifying the Testing and Diagnosis of Lyme Disease

Chris Kresser:  And whether Lyme is increasing in prevalence.  I mean, it’s really just a remarkably polarized issue that gets incredibly heated and almost violent types of disagreement, which is unfortunate because patients or the general public are the people who really suffer from that, who are just trying to get some information and learn about a condition that they feel like they might be affected by.

Let’s maybe talk a little bit about diagnosis, and that will, I think, serve as a doorway into some of this controversy.  What are the tests as a clinician that you rely on to diagnose Lyme disease?  And then how does that differ from, say, the criteria that the CDC lays out for diagnosing Lyme?  And then maybe we can talk a little bit about some of the newer tests that are becoming available and what some of the issues with those are.

Dr. Sunjya Schweig:  Sure.  That sounds good.  I’m actually going to turn that around.  I want to talk first about the mainstream CDC criteria and diagnostic recommendations as a starting point, and then I’ll kind of jump off into some of the ways that’s not ideal and then some of the stuff that we’re using.

Basically, if you go to your regular doctor and you have a documented tick bite, and let’s say you even have the bull’s-eye rash, which is stereotypical, which does not happen in all patients.  It probably only happens in about maybe 30% to 50%.  So if you go in and there’s a suspicion for Lyme and your doctor agrees to test you, the recommended testing is what’s called a two-tiered test, which means that they run what’s called an ELISA antibody test first, and then only if that’s positive does the test reflex over to do what’s called a Western blot test.

If you look at the research literature on this methodology, unfortunately the false negative rate is anywhere from 33% to 75% by that two-tiered testing criteria.  And there are a number of reasons for that.  On the one hand, a certain percentage of people are lucky enough to mount a robust antibody response and then that shows up on the blood test.  A significant amount of people are not.  And it also has been shown that the longer you’re sick with this and the longer it’s been since you were actually exposed, you’re actually less likely to show an antibody response because of the way the bacteria can evade the immune system.  These are what are called stealth pathogens, and they’re actually remarkably well designed to persist and to hide from the immune system.  So after a while, your body kind of gives up and stops making antibodies.  And the corollary of that is actually when you treat somebody and you test them after you’ve been treating them, frequently their tests will turn positive as the immune system sees the bacteria again.

So the two-tiered testing has a pretty high false-negative rate.  And if you do sort of make it through the first gate and you have a positive ELISA and then you do the Western blot, the CDC has set up this criteria wherein certain antibodies that you’re making are considered specific, and certain other ones are not, and they require that you have a certain pattern and a specific number of these different antibodies in order to qualify for a positive test.  And there’s a lot of controversy about which ones they chose and which ones they didn’t.  Back in the ’80s, they had developed a Lyme vaccine, which has been since taken off the market because of some fairly severe side effects that people were developing, but they changed the test once they did that, and they excluded certain bands which would have been positive as a result of the vaccine.

Chris Kresser:  And were highly specific to Lyme, those particular bands.

Dr. Sunjya Schweig:  Right, very specific to Lyme.  And the other problem with the test is that there’s one kit that’s used that has been approved by the FDA and the CDC, and that kit has one strain of the bacteria, and it is the Lyme Connecticut strain.  Worldwide, there are probably 300 different strains of this bacteria, and some really interesting cutting-edge research is coming out of California as we’re seeing what were thought to be only European strains.  We’re seeing them showing up here.  So Borrelia bissettii, Borrelia miyamotoi, and all sorts of other Borrelia bacteria, like Borrelia hermsii, which causes more of a tick-borne relapsing fever picture, which we’re seeing if we know to look for them.  However, that one test kit is not going to pick those up because those antibodies are different.  So there are a number of reasons why the testing is problematic.

Chris Kresser:  Most of which the CDC does not acknowledge.  From their perspective, their testing is accurate.  From what I’ve seen, they don’t really admit to many of these deficiencies.

Dr. Sunjya Schweig:  They don’t admit to it publicly, but there is actually a fairly robust, behind-the-scenes discussion going on.  It’s pretty widely recognized that the testing is inadequate, and I think most scientists agree with that.  But what to do about it is controversial.  The data that’s coming out about these other forms of Borrelia is pretty good, hard science, and they’re not disputing that, and so I think what they’re trying to do is just figure out what to do about it.  Both myself and my wife Lia are fairly deeply involved with Lyme research and Lyme advocacy, and it’s just an actually very, very exciting movement going on in the field right now where we’re seeing a real big upsurge in the last year and a half or so in people who either have funding or have access to funding or have connections in the scientific world, and we’re starting this see this real push towards trying to build a better diagnostic and trying to build better treatment protocols, so it’s definitely an exciting movement, but we’re really playing catch-up, and it’s going to definitely be kind of a trickle-down situation.  The level of disinformation that exists in the mainstream medical community is fairly shocking, and I still get a lot of people who come to me and say:  Well, my doctor said we don’t have Lyme in California so I couldn’t have Lyme.

Chris Kresser:  Right.

Dr. Sunjya Schweig:  If you go the California Department of Public Health, the statistics are super, super clear on the prevalence with the Ixodes pacificus tick being found in 56 out of 58 of California counties and ticks testing positive for Borrelia burgdorferi in 42 out of 58 of the counties.  And when they do tick sweeps, they’re showing actual infection of those ticks at a rate of anywhere from 1% up to sometimes as high at 33% or even 41% in some areas of Mendocino County.

Chris Kresser:  That is truly frightening.

Dr. Sunjya Schweig:  Yes, I agree.

Chris Kresser:  I mean, it’s really a serious issue for people living in those places, and you know this better than I do since you treat people regularly who are suffering from Lyme disease.  Within the Lyme community, it’s something that’s talked about a lot, of course, but outside of the Lyme community, I don’t think very many people are aware that if they go on a walk in a place like Mendocino and they get bitten by a tick that there’s that level of risk that that tick could transmit Lyme disease.

Dr. Sunjya Schweig:  Yeah.  That’s absolutely accurate.  And there’s also some misinformation in terms of what it actually takes for a tick to transmit the bacteria.  The standard information that we get from the Department of Public Health or the CDC is that the tick has to be attached for, they say, usually greater than 48 or 72 hours in order for it to transmit the bacteria.  However, that data was off of some veterinary studies and doesn’t necessarily apply the same way to humans.  I think it’s kind of a bell curve.  I think on average it might take that long, especially if a tick hasn’t fed in a long time and all the bacteria is kind of hiding out in its hind gut, but if a tick has fed more recently or in circumstances we don’t quite understand yet, I’ve seen, for example, a patient of mine who came in.  He had gone kayaking.  He hiked in with his kayak at 9 in the morning, he hiked out at 6 p.m., and in the shower that night he found a tick and he removed it, and he developed a bulls-eye rash and Lyme symptoms.  So that’s a tick attached for about 8 hours.

Chris Kresser:  Wow.

Dr. Sunjya Schweig:  So yeah, there’s a lot of misinformation, but we’re working on that.

Chris Kresser:  So there’s the two-tiered criteria and all the issues with that, and particularly important, I think, is the message that you don’t necessarily need to have a bulls-eye rash and that in really at least 50% and possibly a majority of cases people won’t have that rash.

Dr. Sunjya Schweig:  Right.

Chris Kresser:  So that’s something to be aware of if you get a tick bite.  You don’t necessarily need to have that rash to develop Lyme.

Promising New Lyme Disease Testing Solutions

Let’s talk now about some of the other options for diagnosis outside of the two-tiered test and what you’re relying on these days in your practice.

Dr. Sunjya Schweig:  Yeah, sure.  And then one last closing thought on the two-tiered test:  There’s some good legislation that’s coming out, particularly in the East Coast, like Virginia and Massachusetts.  And in Virginia, they’re actually in the process of passing a law – it might have already gone through – but they’re basically saying that every time someone’s tested for Lyme disease that they need to have on that piece of paper that the lab comes back on the piece of information that says that the testing is not perfect and that if you are symptomatic you could possibly have Lyme disease even with a negative test.  So that’s kind of a cool step forward.

Chris Kresser:  Yeah.

Dr. Sunjya Schweig:  But what we’re looking at again is that if there are any antibodies on that test and the person has symptoms that it’s possible that that’s part of what’s going on for them.  So what we do in our practice is I always do my best to see if I can find laboratory evidence of these infections through the most mainstream and well-accepted lab possible so that there’s less of a chance that other doctors could say it’s not real.  So I’ll run the testing through the regular labs, and if something’s showing up and the person’s symptomatic, then we’ll talk about treatment options, and if we feel like we need other testing avenues, there are a number of different directions to go.  There are specialty laboratories, like IGeneX, which I will use; however, I do find myself using it less and less, given that there’s a fair amount of controversy and a lot of doctors, again, like to just say that IGeneX calls everything positive so we’re not going to believe it.  And there’s a test called a CD57 cell count, which is a white blood cell marker.  The CD stands for cluster of differentiation, and it’s basically just a flag on the surface of the cell where we can identify them and sort them.  And there’s been some discussion in the literature about this one subset being low in people who have persistent or chronic Lyme disease, and I’m finding that to be helpful but not totally diagnostic.  I think it can also be low with chronic viral infections.

Chris Kresser:  Right, like HIV and some others, huh?

Dr. Sunjya Schweig:  Yeah, HIV, maybe HHV-6, maybe mycoplasma, so there are a number of possible causes.

Chris Kresser:  And perhaps others that we don’t know about yet.

Dr. Sunjya Schweig:  Right, exactly.  Yeah, so I use it more like:  Does it put someone in this ballpark of this kind of illness cluster?  And the newest test that has been available is a blood culture, which I think we should definitely talk about.  It’s a blood culture for Borrelia species, and what they do basically is draw the patient’s blood sample, send it back to the lab, and they look at the result.  They put it in an incubator, they enrich it with a 12% rabbit serum, which has higher potential for growing the bacteria, and then they put it into a long-term culture for anywhere from 8 to 16 weeks because what has been shown is that the Borrelia bacteria are very, very slow growing, which is part of why the treatments take so long because they are best treated when they’re actively replicating.  On average, they probably replicate once a month, and this is totally different than “normal” bacterial infections.  So the Borrelia culture test has been really helpful.  It’s really new.  We’re still trying to figure out in my practice what are the chances we’re just getting false positives.  Or even more interestingly, what are the chances that many people, if not most people, have been exposed at some point and might have some of these bacteria in their system and yet it’s not either (A) causing them symptoms, it’s not (B) the main driver of their symptoms.

Chris Kresser:  Right.

Dr. Sunjya Schweig:  And so that goes into the whole “old friends” discussion and what can we handle and not handle.  But I think, on the face of it, we really should not have any Borrelia bacteria growing in our bloodstream.  And what we’re kind of looking for at this point with the lab is we’re waiting for independent verification for other universities and other laboratories to be able to repeat their initial studies and results as they are validating the test and to show that there’s no reason for us to be concerned about false positives that there could be some kind of cross contamination or other reasons.  But at this point, it has been a very helpful test for our practice because it has been able to show growth of these bacteria when the antibody tests are not picking it up.

Chris Kresser:  I’m just curious, have you had any situations where antibody tests have been positive and the culture has been negative?

Dr. Sunjya Schweig:  I have, yes.  And what we always have to do is this kind of dance of, well, what are the symptoms?  It becomes kind of an exchange of information between the patient’s picture or the symptom picture that they bring in, the lab testing, the results of the various tests we do, and then if we’re still not sure, what I will generally guide people into is some provocation treatments.  And initially I always prefer to do those with herbs because there are just generally less side effects.  We have these targeted herbs or even targeted formulas against either Lyme or Babesia or Bartonella, etc., some of the co-infections, and we’re looking for any aggravation responses or any flare-up reaction which could indicate that there is a hidden infection.  It’s kind of like working in smoke-and-mirrors land.  You have to really feel your way along.  One of my mentors said that it’s kind of like we’ve just been dropped into the jungle and we have no map and we have no sense of direction, and we get information from each step that we take in the response to that step.

Chris Kresser:  And complicating things further.  I mean, there are some symptoms that are typically a red flag for Lyme, but most of the symptoms of Lyme are nonspecific, which means they could be associated with any number of other things.

Dr. Sunjya Schweig:  Exactly.

Chris Kresser:  And of course, that makes it really difficult for the patients and difficult for their clinicians.  I think the culture test is really promising, and it’s kind of a fascinating microcosm of the macrocosm of controversy that exists around Lyme because the research that’s been done so far has been done by scientists who actually work at the laboratory that does the test and the company that sells the test, and that in itself doesn’t invalidate the research at all, but at least in the scientific community, it raises some eyebrows and it makes us think:  OK, well, this is a promising result and now that they’ve published their methods in a recent paper in a peer-reviewed journal, not a very well-known journal, but their methods are now out there, and like you said, other scientists can try to reproduce those methods and see if they get the same results, and that’s how the scientific method works, and that’s really what we need to do in order to treat this as a reliable test.  But it’s exciting, I’m sure, for you and I’m only peripherally involved in Lyme.  I have patients with Lyme, I don’t specialize in treating it, but the difference with this test, of course, is all of the other tests are sort of indirect.  They’re looking for antibodies in the case of the ELISA and the Western blot, and it’s possible that someone could have been exposed to Lyme before and it’s not a current issue for them, or in the case of the CD57, it’s even less direct because it’s just looking at a marker of immune function, which could be impaired by some things that we do know and other things that we don’t know about.  But with the culture, they’re actually culturing the organism in the blood, so if it turns out to be a reliable test, it seems to me that that would be a game-changer in Lyme diagnosis.

Dr. Sunjya Schweig:  Yeah, we’re very hopeful.  And in the meantime, there are a number of other efforts under way.  There are some researchers at Johns Hopkins.  There are some folks at Stanford and UCSF, and mind you, these are all on the research side, so if you go and talk to the clinical physicians, you’re going to still get the party line, but we’re starting to get these pockets of researchers who are willing to look at this thing.  For example, at Johns Hopkins, they’re building what’s called a biorepository, but right now they’re only using documented EM rash-positive Lyme disease patients.  So they take pictures of the rash, they measure the rash, and there’s no dispute that these people have Lyme.  And then what they’re doing is they’re doing a baseline and then serial blood samples, collecting these folks’ blood and going out in time, and what we’re hoping is that we can kind of develop biomarkers of this illness and the people with acute illness and then people who get better and then people who don’t get better, people who have residual symptoms, and try to figure out what’s different and how we can develop new tests.

What to Do If You Think You Have Lyme Disease

Steve Wright:  Sunjya, we’ve talked about some really cool new testing that’s coming up, and we’ve also talked about the older and first forms of the ELISA testing and stuff for Lyme, so for someone who’s listening to this, it’s 2013 right now as we record this, what would you give them as far as what they should be asking or talking with their practitioner to cover all their bases to try to figure out if they did get infected?

Dr. Sunjya Schweig:  That’s a great question, and I would really recommend that if people are sick and they have these nondescript, chronic, fairly debilitating illnesses that, you know, the classic story is that people have gone from doctor to doctor to doctor over a number of years and haven’t been diagnosed with anything wrong other than maybe they should go see a psychiatrist, and in those cases, if they’ve never been tested for Lyme disease and co-infections, whatever they can do to get to a doctor who’s willing to test those would be really important.  And if they can get it through their regular primary care doctor, it’s definitely worth doing the Lyme ELISA and Western blot as well as antibody testing for some of the more common co-infections like Bartonella and Babesia and Ehrlichia as well as viruses like Epstein-Barr and HHV-6.  CD57 cell count, that’s another good one.  Some of these you can get done through your regular doctor if they’re sympathetic and willing to run them, and if not, then pretty much people have to find their way to a Lyme-literate practitioner who has the knowledge of how to interpret these tests and the willingness to order them.

Chris Kresser:  Right.  I just want to jump in and say there are some conditions we talk a lot about DIY, self-treatment options, and there are many that can be safely done, with some caveats, of course, but Lyme is so potentially serious and such a changing landscape and so controversial and there are so many things to consider that if it’s at all possible, I think finding a physician or other healthcare practitioner that is very current and specializes in the diagnosis and treatment of Lyme is a really important first step to take.  Personally, that’s always my recommendation to people, and it’s not something that I would really mess around much with because a lot of general care practitioners aren’t really current with this stuff.

Dr. Sunjya Schweig:  Yeah, they’re not.

Chris Kresser:  They don’t know what tests to run.  They don’t know how to interpret the test even if you tell them what test to run.  It’s not always possible or easy to find a Lyme practitioner, but Sunjya, what resources are out there in terms of online directories, or how would you recommend that people go about doing that?

Dr. Sunjya Schweig:  There are a couple of good organizations that are working to build the science and improve education around this.  One of the first ones is called ILADS, and it stands for the International Lyme and Associated Diseases Society, and they have a directory of physicians.  There’s also in the Bay Area a group called the Bay Area Lyme Foundation, who are newer to the scene but really quite instrumental at this point in improving education, and they would have access to some physician information.  On the East Coast, there’s the Tick-Borne Disease Alliance.  They would also be a helpful group.  There are a number of good organizations who have lists of practitioners who can look at this thing.

Steps for Preventing Lyme Disease

Chris Kresser:  We could probably do about 40 podcasts on Lyme disease and still have a lot to talk about, right?  And I know there are some people out there who are maybe hoping for a much more in-depth discussion on certain points.  The idea here was to give a basic overview of the landscape, and in that spirit, since we’ve talked a little bit about the controversy and a little bit about diagnosis, I’d like to at least discuss a little bit of prevention and treatment.  Obviously, we’re not going to be able to go into great detail about treatment, but maybe we could just talk about the range of options, what you’ve found and what you’re focusing on now in your practice, and then the kind of strategies that you use with yourself and your family and what you recommend to patients in terms of prevention in areas where Lyme is endemic, like in our neighborhood, for example.  Right up here in Tilden Park there’s a fairly incidence of… I haven’t seen recent statistics, but I remember reading something that a fairly significant percentage of ticks in the Tilden area carry Lyme.

Dr. Sunjya Schweig:  Yeah, I would say it’s probably in the 7% to 12% range.  And interestingly, and this is a little spooky, but the ticks really vary in size, so in terms of prevention, it can be actually kind of hard to spot them.  And the nymphs, the baby ones, are about the size of a poppy seed, and unfortunately, those are the ones that have the highest rate of carrying the bacteria.  On the West Coast out here, that’s due to the fact that we have the western fence lizard, and as ticks grow from baby to adult, they have spent more time feeding on these western fence lizards, and for some reason there’s a complement protein in the blood of these lizards that actually cleans out the Borrelia burgdorferi bacteria.  So adult ticks that we’re more likely to see have a decreased rate of carrying the bacteria and less risk of passing it.  It’s the little baby, poppy seed-size ones that we are actually fairly unlikely to find on ourselves that have the higher rates of carriage – again, depending on the geographic area – but as high as 30% or maybe even 40%.  And that lizard is actually part of why there’s less Lyme here than there is on the East Coast because they don’t have that lizard.

Chris Kresser:  You often hear of tick repellants, both the conventional types and then maybe we could call them the hippie versions with essential oils and coconut oil and things like that.  Do you have any thoughts about those and their effectiveness?

Dr. Sunjya Schweig:  There’s not a lot of data on them.  I think that anecdotally there might be some sense that they can help.  The pretty hardcore DEET is effective.  It’s just a question of who really wants to put that on themselves or their kids.

Chris Kresser:  Right.

Dr. Sunjya Schweig:  I still love hiking.  It’s important to be out in nature, and the thing that we try to do now is wear long pants, tuck your pants into your socks, and try not to sit under the oak trees in the leaf litter, the high area where ticks tend to hang out.  And when you get home, you take your clothes off, you put your clothes in the dryer for 30 minutes, and you take a shower.  And that’s probably one of the best ways to prevent tick attachment.  And be aware of the fact that the ticks tend to crawl up onto the grass blades and hang out along the edges of paths, so wider paths are definitely better.  The smaller, single-track paths will have a higher risk of ticks hitching a ride on you.

Chris Kresser:  How about time of year?

Dr. Sunjya Schweig:  Yeah, absolutely.  It’s possible that you could be exposed and bitten by a tick carrying Lyme disease any time of the year, particularly out here in California.  It takes a pretty long and deep freeze for them to go into hibernation.  Now, that being said, there’s definitely a higher risk in the early spring through early summer months, and that sort of plateaus by the middle of summer and starts to taper through the fall.  So it’s a higher risk during those months, but it is possible any time of year.

What Are Effective Lyme Disease Treatment Options?

Chris Kresser:  OK, so treatment.  There obviously are a number of options here, and of course, the controversy doesn’t stop here either.  We have everything from high-dose, multiple oral antibiotics to intravenous antibiotics to things like the Buhner protocol and various herbal treatments to Rife to any number of things.  So given that we can’t discuss all of them, maybe we should just focus on the ones that you are using most in your practice now and you think are the most effective and promising.

Dr. Sunjya Schweig:  Yeah.  I divide the field into a couple of major compartments, and on one side there’s most of mainstream medicine that does not think that these chronic infections exist, and on the other side are practitioners like myself, which fortunately there are more and more of these days.  There are more folks being trained and there’s more awareness, so it’s slowly growing.  There’s this group of people who do think that this thing exists and that we have to try to find it and understand whether or not people are sick with this, and then if they are, we have to find a way to treat it.  And within that group, which is the most interesting group to me, there’s a wide range of thoughts on how to do it.  On the more extreme end, there are the practitioners who think that you have to treat with three to four, sometimes five different antibiotics at a time, and there are science-based reasons why some folks believe this, which is that the bacteria can exist in different compartments and it can kind of respond to the pressure of the antibiotic treatment and go from being in the bloodstream to hiding inside of the cells or kind of hunkered down into a cyst form and that no one antibiotic covers all of those forms, and so you have to use multiple antibiotics and try to catch it as it shifts from one form to the other.  And then there are the folks on the other end of the treatment spectrum who think that antibiotics don’t really work, that we should be doing infrared sauna, salt and vitamin C protocols, Rife machine, energetic medicine, etc.  And I’m somewhere in the middle.  I use a lot of antibiotics.  I try to use them judiciously, but I’ve done them enough now that I have seen a significant group of people who really, really are helped by it and who get better and stay better.  And at the same time, there’s a group of people who either can’t tolerate them or who just seem to be getting sicker when we’re doing those kinds of treatments and, to me, it feels like there’s something else going on.

Chris Kresser:  Sunjya, when you say “antibiotics,” are you referring to oral or intravenous or both?

Dr. Sunjya Schweig:  Mostly I’m using Western medicine antibiotics – because there are also herbal antibiotics, but when I’m using Western medicine antibiotics, I’m usually using oral.  I also actually found that intramuscular shots, like something like Bicillin is actually really helpful because it bypasses the gut.  And in some cases, I will use IV, although it brings up a new set of risks.

Chris Kresser:  Right.

Dr. Sunjya Schweig:  And to be honest with you, getting into this world has always been a little bit a struggle because I came at it from a really integrative, complementary, alternative medicine point of view, which is that I wanted to get away from antibiotics.  I wanted to really do my best to respect the gut and the gut immune system and the gut ecology and the microbiome, so I frequently find myself kind of caught where I see these treatments helping, but on the other hand, I’m always concerned and aware of the risks to the human organism as a whole.  So I will also be rotating in a variety of different herbal protocols, whether it’s some of the Stephen Buhner herbs – He has a couple of really good books out, very, very well-researched scientific works on the actions of some of these herbal antibiotics.  I’ll also use a lot of Byron White Formulas, some really great herbal protocols and products, as well as there’s a woman named Susan McCamish who has a group of products that are really helpful.

And the thing that I think I would also recommend to folks is that if they find themselves in this world that it really helps to work with a functional medicine or integrative medicine doctor because it’s so complicated and some of the symptoms that people experience are due to direct infections, but a big group of the symptoms are just due to various body systems kind of going offline as a result of the infections, and so hormone balancing, adrenal balancing, healing and testing the gut, organic acids, all these aspects from dietary manipulation, gluten-free, dairy-free, grain-free, paleo, Body Ecology – These are things that I discuss with people on a daily basis, trying to balance some of the more aggressive treatments that we’re doing.  Chris and I, we’ve had some discussions about this in the last few weeks, but things as basic as stress management and optimizing exercise and sleep patterns and doing qigong or acupuncture or biofeedback – It kind of gets to the point where in order to get through this, you have to really dial in every aspect of your life and get everything kind of playing together like a symphony.

Chris Kresser:  Yeah.  I treat a lot of patients with chronic illness.  Some have Lyme, but most don’t, but even that is, as you know, Sunjya, the real trick, in that kind of treatment is figuring out what to focus on, how to prioritize, what to prioritize, and how to get all the systems of the body communicating well with each other and working in harmony.  That’s not always an easy process, and I imagine, and in the few patients I have with Lyme, it can get extremely convoluted because it’s never easy to tell what’s directly being caused by the infectious process and what’s being caused by an immune reaction that is sort of secondary to that infection, and it can get really messy, so I completely agree.  Finding someone who’s well versed in functional medicine and, in particular, who has experience dealing with these really complex conditions is important.  And I know that that is easier said than done.  Some people live in areas where there aren’t practitioners like this nearby, or if there are, they have a long wait list or what have you, but it definitely pays off to do a little bit of research and try to find someone that’s compatible, even if you have to travel a little bit to see that person initially.

Let’s close by talking a little bit about resources.  You mentioned ILADS and some of the other websites before where people could find a practitioner.  There are lots of books out there on Lyme.  One of my favorites that I read in the past few years is Cure Unknown by Pamela Weintraub.  I’m curious to know what books you have found to be helpful for your patients.

Dr. Sunjya Schweig:  Yeah, sure.  Cure Unknown is definitely very high on my list, and Pamela Weintraub… I’m not sure if she still is, but she was a science journalist for Discover Magazine, and that book is just impeccably researched and has a really, really strong notes and bibliography section.

Chris Kresser:  Yeah, a very well-written and fascinating read, too.

Dr. Sunjya Schweig: Yeah, it’s a super interesting, fast, engaging read.  Another book I like a lot is a book called The Lyme Disease Solution by a doctor named Kenneth Singleton.  He has a really nice compilation of just explaining the illness, the co-infections, all the symptoms associated with each, and he has some good sections on supplements and on diet – he calls it the Lyme Inflammation Diet – as well as stress management, so that’s a good read.  That’s kind of a handbook on sort of how to do this.  There’s a doctor back East whose name is Richard Horowitz, and I’m anxiously awaiting his book.  He’s coming out with a book pretty shortly, and he’s a really, really, really smart guy who’s been doing this for probably 20 years or so, so that would be a really good one.

There’s a movie called Under Our Skin, which is pretty well done.  It’s fairly dramatic.  It’s a documentary, so it has some pretty severe cases in it, but I think it’s a good representation of the controversy and the science.  There’s also a short, 30-minute film that you can find online by the LymeLight Foundation about a professional skier back East and her journey with Lyme.  It’s a little lighter and easier, more accessible.  With the Under Our Skin movie, I generally don’t like my patients to see it until they’re a lot better just because I don’t like people having scary, negative images.

Chris Kresser:  Yeah, the nocebo effect.

Dr. Sunjya Schweig:  Right.

Chris Kresser:  So, Sunjya, how can people who are here in the Bay Area and California who perhaps those who might be willing to travel to see you find out more about your practice?

Dr. Sunjya Schweig:  I have a website.  It’s www.DrSchweig.com.  And I’m currently practicing up in Sonoma County, and I’m probably going to move part of that practice down to the East Bay, so stay tuned for information on a possible new office.  And then you can also get in touch with Chris.  He’ll have my information is people want to find me.

Chris Kresser:  Great.  Well, thank you so much, Sunjya, for coming back on the show.  I have a strong suspicion that we’re going to get some requests for a repeat visit because we just kind of scratched the surface of this topic, and it’s a big one on a lot of people’s minds, so hopefully we can get you back to do another show in the future.

Dr. Sunjya Schweig:  Yeah, it would be my pleasure.  It would be fun to do a show on the gut and the whole microbiome when related to these illnesses.  I think that would be an interesting conversation.

Chris Kresser:  Oh, yeah, that’s right up our alley, for sure!  And maybe a little more on the discussion of “old friends” and how it might relate to Lyme, because as you and I have talked about, I think that’s a really fascinating potential avenue of exploration and something that’s been on my mind and that I’m speaking about at the Ancestral Health Symposium this year, provided I can finish my book in time and prepare the presentation.  That’s another story!  So thanks again, Sunjya, for coming on, and hopefully we’ll have you back on soon.

Dr. Sunjya Schweig:  Yeah, you’re welcome.  Thank you very much.  I appreciate it.

Steve Wright:  Yeah, I kind of hear a series beginning here.  That was pretty awesome, Sunjya.

Dr. Sunjya Schweig:  OK, yeah, thank you.

Steve Wright:  Thanks, everyone, for listening to this podcast.  In between our Q&A episodes, we like to bring on great experts like you heard today, but we will be doing more Q&A episodes in the future, so if you’d like to submit your questions, please go over to ChrisKresser.com and use the podcast submission link.  And if you loved this podcast, if you want to hear more from Sunjya and more from Chris, please go over to iTunes and leave us a review.  Let us know in the comments section below in this post what you thought and what you’d like to hear on further shows.  Thanks for listening.