The Infection Many Doctors Miss – Why Lyme Disease Can Hide Behind Chronic Symptoms | Lyme / Chronic Infections | E117

Currently, the standard of care is to do a Lyme antibody test for the antibodies for Lyme before you do a western blot or some more advanced test. According to the CDC, 50% of people that are later found to have Lyme disease have a negative initial screening test, which means the test is useless, but it's still the standard of care. So I've been asked to talk about something that is happening more and more often that you are hearing about in the media, more often you're hearing about in social media, more in groups. It's Lyme disease or tick borne illnesses. So I want to talk about this briefly because it's a big blind spot in our healthcare system. It's a big blind blind spot in doctors and how we look at healthcare. And it's super common and not it shows up, not the way you think. So first let's talk about Lyme infections from a national standpoint. According to the cdc, there are more cases of acute Lyme every year in the country than there are cases of new breast cancer. So what that means is acute Lyme a new case? A new case, not old case, not chronic Lyme disease, not recurrent, but just acute, is more common, is occurring at a higher rate than breast cancer. So you think something that's that common would be commonly talked about. And the answer is no. Our healthcare system is set up to look at acute infections. Acute Lyme, acute, acute, rocky, mounted, you know, acute, whatever. But the chronic, insidious, chronic infections that you see with reactivation of Epstein Barr virus or chronic mono or CMV, or people who get recurrent C Diff or whatever the chronic infection is, we're using Lyme as the example because this is a big, big deal. We're not set up for those chronic infections because they're more complex, they're more complicated and they're harder to track. And so what's happened with the Infectious Disease Society of America? They have taken a stance against managing chronic Lyme disease. The ilads, the International Lyme and Associated Disease Society, has taken that, hey, chronic Lyme is a thing, recurrent Lyme. So what do I even mean by this? And what are these illnesses? You have to realize that Lyme disease is a spirochete, Borrelia burgdorferi. And if you think about spirochetes, the great imitator back in the 1700s was syphilis. It could look like anything. You'd have a little chancroid, little lesion, it goes away, you get heart issues. 20 years later, you get, you Go psychotic, you become crazy. From neurosyphilis, really common in Europe, but it was a mystery illness. It could look like almost anything. In many ways, Lyme disease is like that. And you wonder why. Well, Lyme is a spirochete, just like syphilis. And one of the things that's interesting about spirochetes is they can take different forms. They can have an acellular form, a cystic form, a spore form, where they basically kind of hide from your immune system and aren't active active, or they're active, or they change the form from inside cells versus outside. So it's really kind of interesting how the infection of borrelia Lyme, Borrelia burgdorferi works. And that's one of the reasons why it looks like so many different things. It can look like chronic fatigue or fibromyalgia. It can look like brain fog. It's really interesting. There's one study looking at it was people who died from Alzheimer's disease, and 80% of the Alzheimer's patients had spirochetes and the brain biopsies. So then all of a sudden you have to wonder is chronic, Are chronic spirochetal Lyme type infections players in patients with dementia? You know, I've had patients come to me. Well, actually several veterinarians that I see. One of them actually came in and had a neuropathy. I actually came with a drop foot, had an MRI from orthopedic surgeon, and it looked like she needs surgery for her back. She came and saw me. And because of her story, I wasn't 100% sure because you can get bell's palsy and other facial paralysis from Lyme. So I checked it, and she actually had rabid Lyme disease and her drop foot went away with doxycycline for two, three months. And so that's the problem with chronic Lyme or recurrent Lyme. It's gonna look like a single nerve thing. It can look more diffuse, like dementia. It can look like chronic fatigue and fibro, which appears unrelated. And because chronic Lyme diseases, typically the majority have other things with them, like babesia, like Bartonella. You can also have weird hormonal like things, hot flashes, cold flashes. You can have brain fog. With Bartonella, you tend to see more pots, more dysautonomia, more pain, pain, nerve pain syndrome. So all of a sudden, now chronic Lyme and the company it keeps can be a mystery illness that can be sometimes hard to nail down. And what makes this even more difficult? What Makes this more difficult than the fact it can be a great imitator. What makes it more difficult than it's a blind spot in our current healthcare system that the big, you know, infectious disease society of America doesn't acknowledge this is that our current testing is poor. Currently, the standard of care is to do a Lyme antibody test for the antibodies for Lyme before you do a western blot or some more advanced test. According to the CDC, 50% of people that are later found to have Lyme disease have a negative initial screening test, which means the test is useless, but it's still the standard of care. And then you go to the western blot testing, which some of you may be more familiar with. Western blot, with hiv, you do an antibody test. If it's positive, the first test, the second test to make sure it's really positive is a western blot. That's typically how we make the diagnosis. But the issue is there can be a lot of cross reactivity. And because of the immune. Because of the western blot requires an intact immune system. It requires your body to recognize Lyme, to have your T cells, to have antigen presenting cells eat up, eat it up, then present it to B cells to then make antibodies. If there's any dysfunction in that handoff that has multiple steps, multiple layers, all of a sudden the antibody testing will be negative. And that's one of the big flaws, one of the big blind spots on how we currently are diagnosing it with our current labs. And so you need better advanced lab testing, which unfortunately is not covered by insurance. So you can see how Lyme becomes a big blind spot again, being recognized. Lab testing. So what, what, what else do you need to think about when you think about issues with Lyme and chronic Lyme?

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One of the concepts to think about is that like many other infections, whether it's Epstein Barr or HSV for cold, herpes, cold sores, or chickenpox, varicella, zoster, the borrelia, these, some of these tick borne illnesses, the actual parasites I call them, that they can actually become dormant, then pop their head back up and go back down and pop their head back up. So what can happen is you can have a tick bite. And again, you know something I think 60 old numbers. This is a number I read about five years ago. Something like 60% of people will have the bullseye rash, the typical erythema nigra, which means 40% of people never have the rash. And most people, half of people never remember tick bite. So. So if you don't catch that all of a sudden, it kind of goes in your system and can lay dormant for years and years and years and years and just kind of smolder. And you might not have any idea that you've got this thing smoldering there. And so it pops up when your immune system gets suppressed. I had one patient who actually happened to be a hypermobile Ehlers Danlos patient and she was in a very stressful relationship. And every time her and her, her spouse would have massive, massive blow ups which happened every, every year or two, she would have these massive flares of Lyme disease. And you come in seeing the round bullseye rashes. And the strange thing is this would happen in the wintertime. I've seen other patients present with their first case of Lyme disease in the middle of winter. I had one patient, actually a Parkinson's patient, who initially her whole story started with mold causing her neurological issues. And then one day she got shingles because her immune system was suppressed. And it was obviously shingles, developed a tremor, got the diagnosis of Parkinson's. So that's kind of weird. You had, you know, mold issues and then infection and then Parkinson's come to find. I've been checking Lyme tires on her forever and she didn't go out a lot. So she wasn't camping or anything like that. In the middle of one winter, all of a sudden the lime tire became positive. It had been there for years. And that's what makes diagnosing Lyme super tricky. You have to have a pretty high, that's called an index of suspicion. What that means is the person sounds like they have Lyme, smells like it's Lyme, and you have to always keep on looking for it. And sometimes you do empirical. You have to do empirical treatments. The reason I want to talk about this is it's becoming discussion of Lyme and the complexities of it. We've been talking about a lot on our, on blogs, our social media YouTube channel, et cetera. But I wanted to talk about again because it's coming back to public consciousness through different social media. People talk, you know, well known people popping up with alarm. How'd that happen? Now I want people to understand the context of. It's actually really, really easy to miss this if you're not trained in it, if you're not looking for it. And the reality is I was not trained in this in medical school in central Virginia. I did not learn about it in my residency program in central Virginia. And so I want to talk about the next little short thing. One of the sticking factors why is this so hard to find good physicians to take care of Lyme disease? And part of it's the system itself. So hopefully this information was helpful. I want to keep on doing these couple few more of these little small timid snippets on the podcast about something that's popping up more common and something you need to keep on your radar, especially if you've ever. Well, the reality is it's kind of sort of everywhere even they're having massive amounts of increased incidents of Lyme actually in China and Russia as well. So this is kind of not just here in the United States, it's throughout Europe as well. And they have different strains over there which make even more difficult. So. But I digress. Anyway, we'll keep on talking about this and let me know if this interests you. If you have questions, put them in the Wherever you're watching this below, ask us on social media because we love answering patients questions. Otherwise, take care. We'll talk to you soon.

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