Lyme Disease has been a known tickborne infectious disease since the early 80s. Treatment for Lyme Disease is surprisingly straightforward, but you would never guess that from the controversy surrouding the infection.
Part of the problem stems from “Chronic Lyme Disease,” which is now more appropriately knwon as Post-Treatment Lyme Disease Syndrome, to indicate that the infection is no longer present in these patients. There is some explanation for their symtoms other than persisttent bacteremia.
Today we talk about all this, and dig into a little of the history and the controversy surroudning Lyme Disease.
[00:00:00] Amy did you know that the tick population is increasing?
[00:00:02] Where in Texas?
[00:00:04] Everywhere. Well in the U.S. anyway
[00:00:07] Well actually I did know that. Global warming, milder winters in particular, decreased use of pesticides have not only helped the population to thrive but ticks are also moving farther north – expanding their territory moving into Canada for example.
[00:00:20] I wonder if they’re Democrats pissed off about the election.
[00:00:23] Democratic ticks! But seriously more ticks mean more tick borne illnesses. And today we want to talk about one of those illnesses the dreaded Lyme disease.
[00:00:32] You know Lyme disease is a surprisingly controversial topic in the world of infectious disease.
[00:00:37] Yes it is. So let’s see what all the fuss is about and what we as patients and doctors need to do about it.
[00:00:42] Hello and welcome to 2 Docs Talk. The podcast about health care the science of medicine and everything in between.
[00:00:47] OK so there’s not much Lyme disease in Texas.
[00:00:50] No there isn’t. We’ve only had according to the CDC we only had 18 confirmed cases in 2015.
[00:00:56] But that might be changing. The ticks are on the move – they’re coming for us.
[00:01:00] Well at least for now. Ninety five percent of cases come from only 14 different states. I’m about to tell you the states – Connecticut Vermont Delaware Maryland Minnesota Maine New Hampshire Rhode Island Virginia Wisconsin Massachusetts New Jersey New York and Pennsylvania. That was in no particular order.
[00:01:17] All right. All right so the Northeast and Midwest. So Lyme disease is caused by a type of bacterium called the spirochete under a microscope it looks like it’s in a spiral. The most well-known spirochete is actually Treponema palladium which causes syphilis. But the spirochete that causes Lyme disease is Borrelia burgdorferi and it’s not sexually transmitted.
[00:01:37] Actually I think the CDC is now reporting on another Borrelia species borrelia mayoneia which was recently discovered probably by somebody from the Mayo Clinic I’m guessing.
[00:01:46] I’m relieved that it’s not found in mayonnaise – I like my Hellmann’s and also in Europe I think it’s caused by several different bugs. Anyway the spirochete lives primarily in deer and mice and is transmitted to humans via the black legged tick also known as the deer tick.
[00:02:05] Yes. And here is something that is a little known. It’s usually the nymph stage of the tick lifecycle that transmits the disease because to get a dose of the spirochete this large enough to cause disease, the tick needs to be attached to it for at least 24 hours.
[00:02:24] Yeah more like 36 actually and most people will notice a big ole adult tick after a few hours at the most. But nymphs are teeny weeny and you might not notice them at all.
[00:02:33] Right. So the best thing is to avoid getting bit by ticks.
[00:02:36] That is very hard to do if you live anywhere in non-urban.
[00:02:39] I’ve been but so many times I can’t remember especially as a kid of course.
[00:02:42] I know grown up in Texas where I used to like to compare my sisters and I we were comparing how many take bikes we had. Yeah. And even though I gave my dogs a tick pill every month I still pull ticks off of them from time to time.
[00:02:55] Yeah. Yeah. And you know they would get so big on a dog and you like run your hand down the back and they’re just these big ole fat nasty things.
[00:03:02] Yeah. Big fat white ones- those gross me out.
[00:03:06] OK. Now I heard that guinea fowl eat ticks. We should get one as a pet.
[00:03:11] It’ll last about two seconds in my backyard. But the dogs ate it. OK so you’ve been bit by a tick and now you’ve got Lyme disease. What next.
[00:03:18] Well if untreated Lyme disease has three stages.
[00:03:21] All right.
[00:03:21] The first stage is called Early localized disease and it’s most commonly characterized by a rash that looks like a like a bullseye. So go and google it is called erythema migrans that’s the medical name for it.
[00:03:34] Yeah and most docs if they practice an endemic area will just go ahead and treat the patient for lyme disease if they see this rash even without getting lab tests. In fact the CDC says don’t bother with the lab tests at this stage. They might still be negative.
[00:03:46] Yeah just treat.
[00:03:47] Yeah. Well besides the rash patients can also have very nonspecific symptoms like fever muscle aches fatigue headache swollen lymph nodes but if left untreated they can then move into the second stage of the disease called early disseminated.
[00:04:02] Yeah. This is when you start to see patients come into the clinic with nerve and heart problems. The classic presentation here is a facial nerve palsy – when the patients smile, one side of their mouth droops and they can’t raise their eyebrow on that side.
[00:04:15] But other nerves can be involved, not just the facial nerves, and even worse things can happen like meningitis or encephalitis and then they can also have cardiac troubles as well heart failure and arrhythmias and stuff like that.
[00:04:27] Yes so if Lyme disease still isn’t treated at this point. Patients can develop late Lyme disease. The third stage – and this is the one that most commonly presents with arthritis.
[00:04:36] Yeah and in the second and third stages diagnosis is made in conjunction with lab tests looking for antibodies to the spirochete.
[00:04:45] And treatment is with antibiotics. Doxycycline usually, and treatment last for two to four weeks depending on the stage of disease the patient is in when diagnosed.
[00:04:54] Happily most people have resolution of symptoms within 21 days 21 days three weeks although it can take longer and people with late Lyme disease.
[00:05:04] But some people don’t.
[00:05:05] And this is where things get a little murky and sometimes controversial.
[00:05:09] Right. So there there is something called chronic Lyme disease. Some people who get Lyme disease and are treated have persistent symptoms after treatment. Usually the symptoms are non-specific like joint pain fatigue headache that kind of thing. You definitely don’t get the rash again and they don’t have the cardiac issues.
[00:05:26] Yeah. And at first doctors thought maybe we didn’t treat long enough. Maybe these people are still infected.
[00:05:31] But when we look for bacteria it was gone. These people didn’t have persistent bacteremia. There was no evidence of chronic borrelia infection – no inflammation, no bug found in the blood or joint fluid or anywhere else.
[00:05:43] Yeah. And they didn’t get better when treated with more antibiotics.
[00:05:48] Right. There have been many studies looking at a prolonged course of antibiotics and people with chronic Lyme disease and they just don’t work. We’ve listed about six of these studies in the show notes if you’re interested.
[00:05:58] Yes and the evidence is so overwhelming that these people don’t have chronic infection that the Infectious Disease Society of America, The American Academy of Neurology, and the ad hoc international Lyme disease group have all come out and said that these symptoms are not due to persistent infection.
[00:06:16] Well then it shouldn’t be called chronic Lyme disease.
[00:06:18] That’s a misnomer it implies chronic infection which is not what’s happening here.
[00:06:22] I know. That’s why most physicians and the CDC prefer the name Post Treatment Lyme Disease Syndrome it more accurately describe what’s going on.
[00:06:30] And what is going on.
[00:06:32] Well any number of things for one they could have another type of tick borne illness like babesiosis or anaplasmosis or ehrlichiosis some of these illnesses have similar symptoms to Lyme disease and the deer tick can transmit other diseases besides Lyme disease you can actually be coinfected with one bite.
[00:06:50] Oh interesting. Well also there’s something called Star – southern tick associated rash illness. This can give you the bull’s eye rash, the erythema migrans, and is found in the south east and south central parts of the U.S. including Texas.
[00:07:04] Yes. So these patients with persistent symptoms could have been misdiagnosed.
[00:07:09] Right. Or they could have become co infected or they could have something not infectious altogether like rheumatoid arthritis or multiple sclerosis or fibromyalgia or depression. Most of these patients have very nonspecific symptoms that are present in many different illnesses.
[00:07:25] Or they could have had permanent nerve damage from lyme disease that wasn’t treated until late in the course.
[00:07:30] True. We hardly ever see these kinds of symptoms anymore because most people get treated pretty early these days. But what they don’t have is chronic infection with Borrelia burgdorferi or any of the other Borrelia species that cause Lyme disease for people with Lyme disease the appropriate course of antibiotics is curative.
[00:07:47] So why are there so many chronic Lyme disease clinics popping up all over
[00:07:51] Money of course, why you ask that question? People with post Treatment Lyme disease syndrome are suffering and they don’t feel like they are being heard by the established medical community. So they go to the experts so to speak. And I think we should be clear here is not that the established medical community is saying they don’t have symptoms, that it’s in their imagination, they’re saying it’s not from a persistent Lyme infection.
[00:08:15] Yes and there’s some history there that we’ll talk about it a little later on. But some of these clinics are charging thousands of dollars for a one month course of treatment. And of course they don’t take insurance because no insurance company would agree to cover their treatment regimens they’re not standard of care.
[00:08:31] And these treatments of course are proprietary. They won’t tell you what they treat you with. I presume they will if you agree to treatment and sign a consent form and pay up.
[00:08:40] Well let’s hope there is a clinic in Florida run by an anesthesiologist. He claims to be able to wake up a patient’s sluggish immune system with his intravenous neurological protocol.
[00:08:50] I’m scared to think what’s in that.
[00:08:52] And some of these clinics will diagnose people with chronic Lyme disease when there is not only no evidence of active infection but there is no evidence of past infection either.
[00:09:02] So this violates the germ theory of disease yes which states that infectious diseases are caused by the presence of microorganisms in the body if there isn’t a microorganism present in the body, then symptoms are not due to an infectious disease.
[00:09:14] So why do people think there is some secret conspiracy by infectious disease doctors to keep patients from getting treated for Lyme disease.
[00:09:22] I know. And yet why are they willing to go to somebody who will charge them tens of thousands of dollars to inject them with a cocktail of drugs for which there are no studies. I mean follow the money for goodness sakes. It ain’t with the ID docs that’s for sure.
[00:09:34] So part of the problem though Kendall course is historical when Lyme disease first showed up, it took the medical community several years to figure out what was going on. And at first they didn’t take these people seriously. So in an antagonistic relationship was created between patients and the medical community.
[00:09:49] Right. And all these patient advocacy groups formed and they were and still are very vocal it was the only way they felt they could get hurt and probably they’re going to send us hate mail for saying there’s no such thing as chronic Lyme disease
[00:10:01] Well it won’t be the first time and probably not the last.
[00:10:04] So what’s the final word on Lyme disease.
[00:10:06] It’s treatable. Probably harder to diagnose than treat actually. But we also need to adopt real sympathy and humility when it comes to people who continue to suffer after treatment their suffering is real and our diagnosis might be wrong.
[00:10:19] Excellent point. Did you know there is actually a vaccine for Lyme disease. Yes. But according to the CDC the manufacturer stopped making it in 2002 because of insufficient consumer demand. I think your dog can get vaccinated though.
[00:10:32] Do dogs get Lyme disease.
[00:10:33] I don’t know. Maybe.
[00:10:35] Well that’s our show for today. If you’d like what you heard leave us a review on iTunes. Until next time consider a guinea fowl as your next family pet.
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