Dr. Kyle Warren, DC, CFMP:
Lyme disease has an acute illness, it’s like a flu, you can get a rash, you get headaches, you get sick, you get fever. So, we know this is not the controversial portion of Lyme. Yes, people get Lyme every summer there’s a tick-borne season; has about a week to three-week incubation period so you get bit and then usually get symptoms a week to three weeks later. This is not what people argue about. The argument is about what happens about 20% of the time, 10-20% of the time…
Controversy #1: What is Chronic Lyme or Post Treatment Lyme Disease Syndrome?
10-20% of the time, Lyme disease can cause chronic, mysterious, long-term illness. This typically takes 6 months or a year to ramp up and so sometimes by the time patients are going “oh my gosh I have chronic fatigue, or fibromyalgia or very mysterious neurological effects of POTS, anxiety, depression, (absolute havoc on their health system) they can’t even remember that they got bit by a tick 9 months ago, or 6 months ago. The argument portion isn’t on the acute phase, the argument portion of Lyme, is; what do you do with this sub portion of Lyme patients that seem to have their health completely unravel from this condition?
So, is that what Chronic Lyme is?
Yes the term “Chronic Lyme” once again, people will argue over how good that term is. What we’re really saying is “10-20% of Lyme disease does not self-resolve. Your body cannot kick it out, and once your body cannot kick it out, it creates a chronic inflammatory state in the body which leads to a diffused set of mysterious symptoms. There is controversy on treatment, there’s controversy on testing, on how common it is and how uncommon it is, how long it lasts and what it does. So, this is a huge argument happening within the medical community.
Now I’d like to point out (and I do point this out with my patients)…this actually is not as uncommon as we thought. If you look at the other famous spirochete, it’s called Syphilis. So if you read medical history, Syphilis has three stages. And it doesn’t always go to all three stages. In fact most of the time it went to stage one and it didn’t go to stage two and stage three. It was only in this small sub-population that Syphilis caused complete and utter havoc.
If you look at a disease like Polio; most people know Polio because our president FDR had Polio. It causes this neurological paralysis problem. Well, it only does that a small percentage of the time! Some people say 1% of the time! 1-5% of the time, are most stats we look at.
So, Lyme disease is not the only disease that a good majority of the time presents in this… “oh I got a flu, got sick and then I got better and that’s the end of it.” But in a small percentage of the population, small being 1-20% depending on exactly where you’re looking, it causes more problems and people don’t just get over it.
Controversy #2: Symptoms and Co-Infections
This topic of co-infections: when I go to ILADS conferences and Lyme disease conferences with doctors is one of the biggest things you see variance between doctors. A saying from doctors is that “The tick is nature’s dirty needle.” These ticks live and eat mice blood and deer, and these things don’t just have Babesia or Borrelia, you know Borrelia is Lyme, Babesia is a common co-infection, they often have multiple things. So when you get bit by a tick, it’s not like you just got one present, you just got a whole hoopla of stuff that just went into your system. And this is also what makes each case a little different so if you get Borrelia with Babesia, or Borrelia with a virus, or Borrelia with Bartonella, you know, these are things that start to make each Lyme presentation very different because you get a different cocktail of microbial bugs that are now, we call them “the monkey piling on your back,” dragging you down. It can really make each patient a little different, because it's not about just Borrelia, or Lyme, it’s kind of this weird conglomeration of... "you just got bit by a very, very dirty bug and probably got a couple of things in your system at the exact same time."
Controversy #3: Treatment
There are a certain amount of Lyme doctors and Lyme practitioners who just assume you have all the co-infections. They aren’t even going to spend any money testing and assume you have them all and approach it that way. That leads us into how accurate is all the testing…but I will tell you that that is a somewhat safe assumption that a lot of doctors make; that we assume this is an absolute mess and you probably have three or four or five things (co-infections) with the Lyme, every time.
That’s such an interesting point of view!
I’ve been tested for Lyme and I was told the test came back negative, showing I do not have Lyme, but I feel like I do, and I’m not really sure...?
This happens a lot! There is a different argument on how the testing criteria is interpreted. So standard CDC criteria is they run what’s called an Elisa test, and then if that’s positive they do a Blot Test, either a Western Blot or an Immuno-Blot. On the Blot test (what you look for are) matching Bands. I tell people the coolest part about this is that they glow which for a nerdy scientist in college it’s like, “oh we’re in a lab and something glows!” So, this kind of a fun test to run! I literally remember running these things in college, but you’re trying to match 5 out of 10 (Bands) for you to get diagnosed with Lyme. Now the CDC says directly on their website that this is really not to be used for a clinical diagnosis. It’s not really designed for doctors to use it as the criteria and in fact IDSA which is one of the societies for Lyme has a completely different criteria which is much more based on the clinical presentation of a patient. So between the CDC and IDSA we have actually pretty different criteria, (published criteria), on exactly how to diagnose Lyme. So Welcome to some of the controversy between some of the biggest organizations here!
Most people will follow CDC criteria...and there are some big problems with this. This is really set up for epidemiological surveying not for the clinical diagnosis. It’s set way on the side for if it’s positive, it’s absolutely positive. But we are going to have a ton of false negatives. {False Negatives= Negative results that are highly inaccurate} We are not going to have almost any false positives on the CDC criteria. We have a lot of patients that say I’ve been tested and it was negative. Now what we do is a couple things and I really like what Dr. Richard Horowitz says; he’s got some great Lyme published books and published materials… I just run the Blot; I don’t like to do the first test, then the second test, I like to run the Blot and there are some Bands that I say are very promiscuous, for example Band #41 will test positive a lot. Other bands are extremely specific to Lyme and [Dr. Horowitz] says if any of the specific Lyme bands [on the test] Like Band #23, Band #83, and Band #93 and a few others, which are very specific. If you have the clinical presentation and you’re matching some of those Bands he’s going to make the clinical diagnosis of Lyme.
So what we do in the office is a mixture of making sure you get some more thorough testing then just the initial screener test. A lot of people just get that initial screener test…you want to try to get the Blot Test and then you have to realize there is some wiggle room in the interpretation of that Blot, particularly when you have a lot of the symptoms as well.
Controversy #4: Testing for Co-Infections
The testing with Lyme disease and co-infections is a huge topic for debate. Dr. Paul and I love tests, but we are not naive enough to think that tests are perfect. I think that’s what so many patients tell me “I just want it to be so clear!” And I tell them, we are going to do some of the best tests available to see if we can gain clarity. I have a regiment of tests, but this has been a journey. I tell people I’m kind of in Phase Three of my Lyme Journey. We started this six or seven years ago, and the way we test and the way we help people with it is different than it was six or seven years ago. When I first started there was a lab company, Lyme testing was incredibly expensive to get anything that had reasonable reliability. We’re talking $1,500.00 to $2,000.00 for a Lyme + a co-infection type test and that’s a lot of money! To really just answer the questions of is this Lyme or not, it doesn’t answer, Is it mold? or Do you have inflammation? There’s a whole bunch of other tests you can run. That’s a pretty expensive mark for people. So one of our searches from the last six-seven years is; how can you get a reasonably accurate lab for a price that makes sense for many patients? I gotta tell you, when the lab was $2,000.00 I didn’t run it very much! It was a little outside of a lot of patients price range.
What we’ve been able to get down, long story short with testing is, I usually run two tests for Lyme, those two tests cost about $250. We think those have hit the cost-value ratio for so many people, if I’m suspicious (that you could have Lyme).
I also like to test for the two most common co-infections in Minnesota so I will routinely run the two most common co-infections with Lyme and it’s all under $500. Now you can run more, and we talk about that with each patient that walks in our office, but we often think that, running the most common things in Minnesota, double checking the Lyme through two different methods gives us a very good, cost-effective way to evaluate Lyme in people coming in to see us. Always correlating it with the clinical symptoms and the clinical picture for a patient.
Do you still need to run these additional tests if someone has already been diagnosed with Lyme or treated for Lyme in the past?
That’s a great question! If you’ve already been diagnosed with Lyme, we do things just a little differently. Because I already know you had it at one point and then the question we are asking is “is it gone, are you over it or is this still causing problems?" Because you had Lyme five years ago does that mean all your problems are coming from Lyme? The answer might be Yes, and the answer might be No. If we know we’ve had Lyme in the past, I tell you, we are suspicious because it can pop back up for some people, or they don’t get fully over it. But that is something we have a lot of questions we ask about that, if it’s in your history. And I’ll do a little bit different testing procedure to see if we’re still really struggling with that. But it’s an important question to ask because we find both assumptions on a case which is; you had Lyme, you’re over it, so therefore none of your problems can come from Lyme ever again. And then we also get practitioners that will blame everything on Lyme once you’ve had it, so nothing else ever can be thought of because you had Lyme once, so nothing else is on the radar! It’s important to try to not make assumptions and try to look with an open mind and say; are your problems still coming from the Lyme? Is there something else that has happened that we need to make sure we don’t just assume it’s All the Lyme and then we miss, you know, this other (co-infection)?
Is the treatment the same regardless of the co-infections?
No!! For example we alter our protocol if you have a really bad viral infection, so there are different things you want to do for viruses, both Epstein-Barr viruses, Cytomegaloviruses, other viral problems. If you have Babesia, Babesia is a red blood cell parasite. I always tell people; If you are interested in it, read about Malaria, it’s like Malaria, it just doesn’t kill you. And to be blunt, in America if it doesn’t kill you, we don’t spend a lot of research on it, it just makes you miserable, it doesn’t kill you, we’re not going to spend money and time on it! Babesia, like I said is a red blood cell parasite. Anaplasma is a white blood cell parasite; because the physiology is a little different, they are in different cells, you really have to approach them with some subtle differences. There are some commonalities for sure, but there are differences, depending on what you are presented with for these co-infections.