Episode Transcript
[00:00:01] Speaker A: Welcome back to Integrative lyme Solutions with Dr. Karl Feldt.
[00:00:05] Speaker B: I am so excited about the show.
[00:00:07] Speaker A: That we have ahead of us.
[00:00:08] Speaker B: We have some phenomenal information that could save lives. You're gonna need to tune in to.
[00:00:15] Speaker C: What'S going on today.
[00:00:16] Speaker B: The information is jam packed, so don't step away.
Hello.
[00:00:24] Speaker D: Thank you so much for joining Integrative lyme Solutions with Dr. Karl Feld. I am your host, Dr. Michael Karlfeld. I've been in clinical practice since 1987. I've seen pretty much everything under the sun, worked with so many different Lyme patients, and I know what a devastating disease this is. That's why I'm doing this podcast to make sure that you are armed with the information that you need in order to be able to be successful in your struggle with Lyme. We'll be featuring authors, doctors, professors, and also people like yourself that have gone through the journey that you're going through, that have been where you've been and is now on the other side. And they get to tell their victorious story as to how they battle Lyme so that you can implement that in your life as well. Be sure to like us and write a review on whichever platform that you're listening on. What that does is it enables other people to see us more so that they have access to this information as well. So I'm so excited that you're tuning in and get ready for this upcoming show. It is going to be amazing.
[00:01:40] Speaker C: Well, today I have the pleasure of having Nicole Bell. She is the author of. Yeah. What is the name of your book?
[00:01:51] Speaker B: What Lurks in the Woods.
[00:01:52] Speaker C: What Lurks in the Woods. And that's such a perfect title. Thank you so much for being with me today, Nicole.
[00:01:59] Speaker B: Oh, thank you for having me.
[00:02:00] Speaker C: Yeah. Yeah. So, I mean, what a journey. I mean, what a journey. Do you mind just kind of telling it? Yeah. Where did it start? So it's a story about you and your husband.
[00:02:15] Speaker B: Correct.
[00:02:16] Speaker C: So tell. Tell me a little bit. What. What initiated what. What brought you to write that book?
[00:02:22] Speaker B: Yeah. So let's see, where to begin? So, you know, I really went along many years of my life blissfully unaware of tick borne disease.
[00:02:33] Speaker E: Right.
[00:02:34] Speaker B: And I had a. I was. I grew up in the Boston area, so I. I had heard of it. I remember when I was a child, my mother. I went to Martha's venue with my cousins and my mother was freaking out and telling me to stay out of the grass and so forth. But that was about the extent of what I knew. You know, I Had the, the knowledge of the bullseye rash and just the basic things that I think a lot of people know.
And you know, we were doing very well. So we had lived, my husband had lived all over the country. We met in the New England area, we moved to California, then we had settled down in Raleigh, North Carolina, had a great life. You know, both high tech executives, loved were entrepreneurs, worked in the startup space, decided to kind of settle down and have kids. You know, my husband was older than I was and so he was like, you know, it's your chance to thrive. I'll stay home, I'll be Mr. Mom like you do your career and I'll support you. Which is like every woman's dream, right? It was fantastic.
And, but eventually he started to change. You know, he started becoming depressed, irritable, moody, he experienced bouts of rage and just things, things that, you know, at first sent us to counseling.
[00:03:46] Speaker E: Right.
[00:03:46] Speaker B: And that didn't really seem to help. And then I realized that he was having cognitive issues, right? Like, this man was a brilliant engineer. He was a computer scientist, electrical engineer. And all of a sudden he couldn't remember the security code for our house alarm. You know, he couldn't remember the time to pick up the kids from daycare. And that was when I realized that there was something, there was a pathology going on. And I, I convinced him to go to the doctor.
[00:04:13] Speaker C: And how old, how old was he at this time?
[00:04:16] Speaker B: Yeah, so he was in his late 50s.
[00:04:18] Speaker C: So not very old at all.
[00:04:20] Speaker B: Not very old, Nope. And extremely healthy otherwise, like very active, young for his age, you know, avid outdoorsman.
And as I started researching, you know, Lyme disease actually came up because I was just researching brain fog and random things. And he was a hunter, he was always in the woods. He lived all over the country in several areas considered to be endemic. And so it was the first thing that I had him tested for. We went to an integrative physician that was supposed to really do a deep dive on his health.
And you know, we went and everything came back, quote, unquote, normal, right. You know, his western blot had only one of five bands positive. And they never tested for any other tick borne infections. And they referred us to a neurologist because most of his problems were neurological. And eventually he was given a diagnosis of early onset Alzheimer's disease.
And to make matters even worse, you know, we were still figuring out something was wrong. And his PET scan actually said that he was in the late stage stages of the disease.
So I was floored. You know, we were we were. I was just kind of coming to the realization that something was wrong. He was so smart that he masked his symptoms really well and he wasn't working at that point full time, and so it was really difficult to understand how bad it had gotten. And. And I was, I was confused, to say the least. Right. I'm an engineer by training. I've worked in a biomedical and material science engineer. And as an engineer, you're trained to look for root causes.
[00:06:02] Speaker E: Right.
[00:06:02] Speaker B: Like, there always has to be a reason that something's happening and you just have to figure it out. And so I tried to take that same approach to his care as his caregiver, and I just was frustrated.
[00:06:13] Speaker E: Right.
[00:06:13] Speaker B: We went from doctor to doctor with no answers. And they frankly kind of chastised me for even asking the questions.
[00:06:21] Speaker C: Yeah, because it was Alzheimer's. I mean, it's diagnosed, you know, what more do you need? Yeah, we don't have any cure for Alzheimer's, so why are you stressing us?
[00:06:30] Speaker B: Yeah, yeah. Here's some namenda, here's some aricept, you know, try it out. It might delay things. It may work. I remember it's like, is this going to help him? And the best answer was it might, it may not. It may, it may not. You know, and basically they were perfectly happy to just track his decline and you know, do the cognitive tests and see how he, how he would progress in his disease state. And it just, it was super frustrating. And to make a long story short, I raged against the machine for a while and then finally kind of gave up and started planning for the eventual demise. And then my brother called me because my sister in law had been diagnosed with tick borne diseases and she had multiple co. She had, she had borrelia or Lyme disease, Bartonella and Babesia. And my brother's a doctor and we have similar personalities. So he started going down the rabbit hole of reading all the research and he was convinced that that was what was going on with Russ. And I was like, you know, hey, I, I had him tested. He was negative. And then we started talking about how bad all the tests are. And so that was the point. Fifteen months after our original first appointment, you know, I had him retested and found out that not only did he have Borrelia or Lyme disease, but he also had bartonella and Babesia, which, I mean, now in hindsight it makes perfect sense. You know, Bartonella with his, his series of rage and irritability and a lot of the neuropsychiatric symptoms. I mean, the things I know now, I just didn't know then.
And so we treated for a long period for about 18 months. And he had some mixed responses. A lot of his other symptoms went away. You know, he. He eventually developed joint pain and other things considered more normal, quote, unquote, for Lyme disease. I now know much differently.
[00:08:20] Speaker C: There's nothing normal. Yeah, exactly.
[00:08:21] Speaker B: There's nothing normal. But, you know, you have these preconceived notions that you have to learn and educate yourself otherwise. And. But the neuro. The neurological piece never really improved, and he can. He continued to decline. I mean, it was just the analogy. I always, you know, that comes to my mind is it's like a forest fire, Right. Once the forest is completely ablaze, it's really difficult to get it under control.
And so in 2019, I was drowning, Right. I was still working at that point. I had scaled back to halftime in my job. They were great with me. And my kids were 5 and 8. And, you know, and Russ was essentially a full time dementia patient. And not an easy one. You know, not that there's ever an easy dementia patient, but you can definitely. There's definitely versions that are more belligerent and difficult. And he was definitely of that ilk. And.
And I was drowning. I mean, it's literally the hardest job I've ever done was be a caregiver. And so I ended up mainly for the kids. I think I probably would have suffered more on my own if it was just me, but I had two young children that I just couldn't have grow up in that environment. And so I placed him in a resident care facility in 2019, and then he passed away in 2022.
So that's the somewhat short version, but it was a journey.
[00:09:40] Speaker C: So in what kind of therapies were you looking for? I mean, because commonly out there, when you hear Lyme disease and they throw you on a couple of weeks of doxycycline and think that that's gonna, you know, wave the magic wand and fix everything.
[00:09:55] Speaker B: Yeah.
[00:09:55] Speaker C: But obviously it doesn't. So what did your journey look like?
[00:10:00] Speaker B: Yeah, so the physician that we went to put him on a pretty hardcore set of broad spectrum antibiotics. So he was on multiple antibiotics for about six months, including IV treatment. And that actually served him well in the beginning. But after about six months, he was really struggling. And along that time, he was also having a lot of more holistic things to keep him healthy. You know, he was on herbal regimens, detox protocols, I mean, pretty extensive protocols. You know, buckets of pills and different engagements. We shifted later in his treatment to kind of more targeted antibiotic therapies along with more of an herbal protocol. I tried more extreme, or I won't say extreme, but more fringe therapies like stem cell treatments and. And so forth. And with mixed results. You know, some that were great but just never quite got him to the point where he was stabilized.
I was trying everything at that point just because he was, you know, really behind the eight ball from the beginning.
[00:11:08] Speaker C: And that's the thing, I mean, with, with that kind of imaging and they see on the imaging that is already late stage. I mean, it. It's one thing to stop the progression, but it's another thing to undo what has already been done. Yeah.
[00:11:23] Speaker B: Yes.
[00:11:24] Speaker F: Hello, dear listeners, this is Dr. Michael Karlfeld, your host of integrative Lyme solutions. Today I'm excited to share an exclusive opportunity from the Karlfeld center, where we blend healing power of nature with groundbreaking therapies to combat Lyme disease and its associated challenges. At the Karlfeld center, we're not just fighting Lyme, we're revolutionizing the way it's treated with cutting edge therapies like photodynamic therapy, full body ozone, IV therapy, silver IVs, brain rebalancing, autonomic response testing, laser energetic detoxification, and more. We aim to eradicate Lyme. Our approach is comprehensive, supporting your body's immune system, detoxification processes, hormonal balance and mitochondrial health, ensuring a holistic path to recovery. Understanding Lyme disease and its impact is complex, which is why we're offering a free 15 minute discovery call with one of our Lyme literate naturopathic doctors. This call is your first step towards understanding how we can personalize your healing journey, focusing on you as a whole person, not just your symptoms. Our team, led by myself, Dr. Michael Karlfields, is here to guide you through your recovery with the most advanced diagnostic tools, individualized treatment plans, and supportive therapies designed to restore your health and and vitality. Whether you're facing Lyme disease head on or seeking preventative strategies, we're committed to your wellness. Take the first step towards reclaiming your health. Visit us at thecarlefullcenter.com or call us at 208-338-8902 to schedule your free discovery call at the Karlfield Center. We believe in healing naturally, effectively and holistically. Thank you for tuning in into integrative lyme solution with Dr. Karlfeld. Remember, true health is not just the absence of disease. It's Achieving the abundance of vitality. Let's discover yours together.
[00:13:24] Speaker B: And I now understand too, right, people with neurological symptoms, right? It can be neurological because the bacteria are actually in the brain because you know, multiple bugs, they have the ability to cross the blood brain barrier or it can just be that they're in other parts of your body and causing inflammation that leads to neurological symptoms. I now know because I donated his body to science and to researchers that I've come to be connected with, that these bugs were in his brain. And so I now have images of, you know, pictures of Borrelia in his brain. And then they're currently actually testing for other pathogens including Bartonella and Babesia to see what the full picture was. So I know that he had, like I said, Borrelia, Lyme disease and also Chlamydia pneumonia, which is a more respiratory infection which is often associated with Alzheimer's disease as well and being investigated. And you know, it's so it's one of those things that if you let these bugs get really advanced, it's difficult and the treatments are not to where they need to be to reverse. And so I always think back about what we could have done differently. And you know, the reality is, is we just didn't know. And that was, you know, to your original question, why did I write the book? That's why I wrote the book is to share this experience and to let people know one, they're not crazy.
[00:14:45] Speaker E: Right?
[00:14:46] Speaker B: I mean, I can't even explain the confusion that I felt when I was first trying navigate this as a caregiver. And I have a scientific background, right? Like I've studied immunology, I've studied, you know, I've worked in the diagnostics industry and it was a struggle because not only I had the technical ability to understand, but I didn't have the time to really dig in because I was juggling. I mean you're doing your job, you're doing your, your, the person, you're caring for their job and then you're also doing all of the caregiving. So it's literally three jobs in one that all of a sudden you're trying to take on and it's nearly impossible.
And so sharing our experience to get people to understand and not feel the gaslighting that they often can feel with the traditional medical society. And then also to just raise awareness of the fact that these tick borne diseases are not just a ration of fever, right? They can be way more insidious and are linked to all sorts of chronic conditions that really people need to be aware of and screened for.
[00:15:49] Speaker C: So looking back, I mean, because it's always that kind of hindsight. I mean you as an engineer, you know, scientist.
Yeah. You asked what, what could I do differently? I mean, I mean obviously you know, any, there's so many people dealing with depression, anxiety and you're just thinking that that's just kind of depression, anxiety.
I mean, do you feel there's something you could have done differently?
[00:16:15] Speaker B: I think if I had known what I know now, one of the first things I would have done is really kind of tested for a broad base of infections that are associated with disease, including multiple tick borne pathogens. And I would have been more deliberate about researching the technology. I mean this is what I do now, right. So I work for a company, I lead a company, Galaxy Diagnostics, which is based upon solid research and direct detection of tick borne diseases. And so um, I would have saw, I'd seek out and anybody that I meet, I'm like, these are the tests that you should be running and this is what you should do and screen. Because you know, not everything is caused by a tick borne infection, but there are lots of conditions that could be related. And wouldn't you want to know if it's treatable?
[00:17:02] Speaker E: Right.
[00:17:02] Speaker B: Wouldn't you want to know if a course of antibiotics or some herbal therapies or other things could, you know, slow or reverse the decline? I mean those are, those are things that I think people have the ability to, to get access to. It's just really awareness that I wasn't, I didn't have at the time.
[00:17:21] Speaker C: I mean it's, it's almost to me, I mean, so here you have somebody that, that's out in the woods and yeah, they're exposed to ticks, you know, lived on the east coast. It almost sounds to me that it'd be good just to do prevention, you know, just, just do things knowing that this is a risk. Then why not do kind of preventative, herbal safe preventatives?
[00:17:41] Speaker B: Yeah. And you know, I would like to get. One of the things I'd like to do is make tick borne disease testing more mainstream. One for people that have symptoms. But also if you live in an endemic area or even a non endemic area in air quotes because I think a lot of places are endemic that people don't realize. I, I would be an advocate of people just getting annual screening as part of their testing.
[00:18:04] Speaker E: Right.
[00:18:04] Speaker B: Just to make sure that they have nothing on board. Because I know now that my husband had these pathogens in his body for years.
[00:18:12] Speaker E: Right.
[00:18:12] Speaker B: I mean, the reality is, is that these are stealth pathogens and they can coexist in our immune, like your immune system can keep them at bay. And the way that I think about it is, you know, you can reach some sort of tipping point, right, where all of a sudden now your, your immune system, your body can't keep it at bay. Maybe you have another infection, maybe you have a trauma, maybe you have a stress in your life. Maybe, you know, something occurs that all of a sudden gets you out of, out of kilter and now it turns into pathology. And so if I had known and if we had screened especially at some of his onset of symptoms, right, like things that you just don't think about, depression, you know, irritability, anxiety. Those are not things that at the time I was like, hey, we need to get you go screen, you know, screen for a tick borne illness. But now with what I know, that's one of the first things I recommend. If you have an atypical presentation, you know, or something that's not responding, therapy or other things like it should absolutely be on your radar, particularly if you're.
[00:19:12] Speaker C: In high risk and kind of looking at, I mean, here he's living a good life, he sees that at home, he's. So there's really no reason for depression, anxiety.
So when you're, you're seeing that there's no correlation really to the symptom that you're, you're manifesting, then, you know, then that would, to me would be a good clue.
[00:19:33] Speaker B: Yep, absolutely right. And I think that we tend to normalize symptoms.
[00:19:38] Speaker E: Right.
[00:19:38] Speaker B: You know, it's, I mean, especially lots of, you know, I'm, I'm in that age where lots of us are going through perimenopause and so forth. And it's like, well, I'm tired and I'm stressed and, and I can't tell you as now that we're working at Galaxy where we have patients, we talk to providers about positive results and it's like, well, it was a female that came in because she was feeling tired and, and had some, you know, some neuropsychiatric symptoms. And she thought it was just related to hormone shifts due to perimenopause. And then sure enough, we run our nanotrap test for Lyme disease and it pops up positive. And guess what? They had, you know, a case back in college that maybe had resurged and come back. And so these are the things that I think we tend to normalize as a society because we're not as healthy as we should be.
And I just encourage people to think outside the box and at least put it on the differential so that you're, you're aware that there's potentially causes that are reversible.
[00:20:36] Speaker C: And like you mentioned earlier, a lot of times, yeah, we, we have these tick borne diseases inside of us for a long, long time. And because, you know, our immune system is strong, we're healthy, we're doing things right, and we're not under stress. You know, we may not be symptomatic, but all of a sudden, like you're saying it's a, it's like, can be a tipping point of something. You know, a physical accident, an emotional trauma, change in hormones, like perimenopause that all of a sudden can weaken your system. And now these, these pathogens are starting to get the upper hand.
[00:21:14] Speaker B: Yep, absolutely. I mean, these are slow growing bacteria and they tend to hide in tissues. And so, you know, Bartonella is a perfect examp. Hadn't even heard of Bartonella when I first started this journey. And now I have a healthy respect for that pathogen. And it's known to be, you know, slow growing and it can be. Actually how it was discovered was in the AIDS epidemic.
[00:21:38] Speaker E: Right.
[00:21:39] Speaker B: Because people never even knew that this pathogen that's been around for, you know, probably millions of years. Right. Was an issue. And then people started getting these skin lesions and when they cultured it, they're like, oh, you know, people with suppressed immune systems are now exhibiting these horrible symptoms. What's going on? And it was again, your immune system is suppressed. And so now the pathogen can come out. And I think what we're realizing in a lot of the space and the research that we're doing is that lots of things, like you said, lots of things, you know, emotional stresses, other pathogens, you know, traumas, those can cause your immune system to flip. And Bartonella is a nasty one. I mean, that's the one that, you know, is attributed to a lot of neuropsychiatric illnesses. And I have to say, you know, my husband, part of the reason I named the book what Lurks in the woods was not just because of the ticks that lurk in the woods. That was a big piece of it. But, you know, my husband, this very rational engineer that always was completely, you know, all of his thought processes were linear and really made sense. Now all of a sudden he was hallucinating and he thought people were living in the woods trying to kill us and swinging from the trees with machine guns as a threat. And this was extremely real to him. And it never occurred to me that a pathogen could, you know, trigger. Like it just really became evident how much the biochemistry of our bodies and our brains really impacts the way we interact with the world. And that was eye opening. It really made me think about our entire mental health industry in a completely different way.
And as it turns out, the research, you know, our founders are over at NC State and they've been doing research on bartonella since the 1990s and they've recently published studies that show that 65% of schizophrenia patients test DNA positive for Bartonella. That was followed by another study with Columbia University that showed that you're three times more likely to have Bartonella in your blood if you've had a psychotic event.
[00:23:38] Speaker E: Right.
[00:23:39] Speaker B: So again, just encouraging people to think differently about some of these disease states and really just dig a little bit deeper.
[00:23:47] Speaker C: And, and that's, I mean we, we are so trained in, in kind of the medical industry that we, we have a symptom and then we have a drug to fix the symptom instead of kind of digging deeper and seeing why is the symptom there. And, and, and I mean it, it should be when you're seeing these kind of statistics and, and it seems to me like the medical profession, it's almost like they don't want to touch Lyme disease. You know, they want to kind of tiptoe around that because it, it's too complex. It's not kind of that easy process where here's a drug and then we, you know, we kind of shut down the symptoms because it manifests in so many different ways. So yeah, it's a, so I mean, one of the things that must have been so scary for you, I mean, so here you have, you know, somebody that exhibiting schizophrenic and then you have a five and an eight year old and this is the gentleman that that's taking care of of them. Yeah. So how, I mean, how, how did you process that? I mean, that must have been so hard.
[00:24:51] Speaker B: It was.
Like I said earlier, it was the hardest thing I've ever done.
[00:24:56] Speaker E: Right.
[00:24:56] Speaker B: I mean, I could not leave him alone in the house. My husband and I had to be careful about the interactions with my children. He was never threatening to them in any way. But there were definitely some scenarios and that I write about in the book where things got really crazy. And the biggest thing is, is that I felt like a prisoner.
[00:25:17] Speaker E: Right.
[00:25:17] Speaker B: I couldn't, I couldn't leave the house. I always had to watch him I couldn't spend time with my children. You know, they were at very impressionable ages, and I felt like I was spending all their time, all my time monitoring my husband, as opposed to actually enjoying time with the children. And, I mean, I very vividly remember the day that I put him in a resident care facility because it was the day before my birthday, and that was my birthday present to myself was to put him in a facility so that I could actually live my life and enjoy my time with my children. And that seems so horrible to say and to think, but that's how bad it was. Like, I literally could not function, you know, on a regular basis. And, and I. And like I said, I did it for my children because I didn't want them to grow up in that environment, you know, and, and it's just. It's a difficult environment for anyone to have to deal with. And so I really have a lot of sympathy for. And I've. I can't tell you, as part of my work at galaxy, I talked to so many caregivers. A lot of them are parents of young children, and their children were fine. And then all of a sudden they start coming up with these crazy OCD symptoms or neuropsychiatric symptoms or, you know, massive levels of anxiety where they can't go to school. And it's crushing. I mean, it's hard to do with anybody. But, you know, I think about having that happen to one of my children and my heart sinks.
[00:26:41] Speaker E: Right?
[00:26:41] Speaker B: It's so difficult. And so that's the challenge is, you know, you're. You're struggling naturally just to live day to day. And then you're also trying to figure out, well, how do I arrange care for this person in this super complex space where there's no set solution and more. So it's, and it's not an even accepted disease states, according to a lot of doctors. You go to a doctor and you say, I think my. My daughter or son has, you know, chronic bartonellosis. They look at you like you're crazy.
But the research is there. And that's. That's one of the things that I like to share with people. And actually one project that I did, a great organization called the center for Lyme Action, is I worked for them before I started working with GALAXY to write a paper, white paper called the State of Lyme Disease Research.
And state, the center for Lyme Action uses this with Congress to basically lobby for more federal funding for Lyme disease research. And the whole idea was there has been enormous research and credibility and scientific evidence that shows what these pathogens can do. And so let's take this and summarize it in a way that's, you know, understandable and can be communicated to congressional staffers. But I also. The reason I took the job was because it was like, this is the document. I wish I had it. I had when I was a caregiver or something I could have given to a doctor that was looking at me like I was crazy. And so I like to give that out for a resource to patients because it's something that will show you that science is. Is on your side. If this is a suspicion that you have, doesn't mean it's 100% in all cases. But there's a lot of science that says that you're justified in being concerned and wanting to get accurate testing done.
[00:28:24] Speaker C: And. And where can people find this paper? Because I. I agree with you. This is something I would like to have. And I know, you know, when patients are talking to doctors, to have something tangible to say, you know, here, you know, see, you know what this is.
[00:28:38] Speaker B: So if you go to the center for Lyme Action website, you know, you just Google center for Lyme Action, it should be right on the homepage. It's called this the State of Lyme Disease Research. And there's the paper, and then there's also a couple of webinars. We've actually done a webinar just for. For cla that's kind of more targeted at patients and then for physicians that are ILADS members, we also did a special.
A special presentation for ilads. This is a little bit more technical focus, and those webinars are available and. And, you know, a resource for both patients and providers.
[00:29:14] Speaker C: And. And do you mind? You don't need to go into detail, but just kind of give it an overview. Yeah. Where is the state of the research? I mean, because it. It seem so hidden. But what. What it sounds like, you know, there has been a lot. And so it. It shouldn't be a confusion in regard to what Lyme is.
[00:29:33] Speaker B: Yeah, I mean, I think if you look historically and when I was starting as a caregiver.
[00:29:37] Speaker E: Right.
[00:29:38] Speaker B: Things that were kind of debated were, is chronic Lyme a thing?
[00:29:42] Speaker E: Right.
[00:29:43] Speaker B: Does the bacteria persist after antibiotic treatment? And I think the definitive answer in the research is least according to, you know, what's out there and the assessment and where we are is the answer to both of those is yes.
[00:29:57] Speaker E: Right.
[00:29:58] Speaker B: Chronic Lyme is. The problem with Lyme is. Is not that it's not there. The problem with Lyme is that the testing, the standard of care testing is inaccurate. And so it gets misdiagnosed, and then it progresses to all sorts of different, you know, multi. Multi systemic or, you know, multibody system issues.
[00:30:19] Speaker E: Right.
[00:30:19] Speaker B: So it can infect the tissue in your brain.
[00:30:22] Speaker E: Right.
[00:30:22] Speaker B: And lead to something like what happened with my husband, Russ. It can infect the tissue around your heart, which can lead to misdiagnosed Lyme carditis. And that, you know, one of the. The people that Galaxy was really close to was Dr. Neil Specter, who was an oncologist at Duke University. And he got to the point where he needed a pacemaker installed and eventually a heart train transplant before he got his diagnosis of Lyme carditis. I mean, this is a man who is a doctor working at Duke University, and he got to the point where he needed a heart transplant because of misdiagnosis. And his testing, his western blot, just like my husband, was negative multiple times up until the point where he was so bad that his body was so, you know, downtrodden and beaten that he needed a heart transplant. Your joints, I mean, every. There's lots of different symptomologies, and so that's how it manifests. And in. People have just historically said it doesn't exist because the testing wasn't sufficient. And. And. And that's what we're trying to solve at Galaxy. The second thing I would say is that there's a lot of research that shows that Lyme disease does persist after antibiotics. And Dr. Monica embers at Tulane University is a hero in her research, and she's shown in multiple animal. Animal models, including rhesus monkeys, that, you know, actually single courses of antibiotics. There's no one antibiotic that will actually eradicate the bacteria in animal models. And you can do it with combination therapies.
But, you know, our standard of care method of just, you know, two to four weeks of docycline is not sufficient.
[00:32:02] Speaker E: Right.
[00:32:03] Speaker B: And so that explains a lot of the other research by Dr. John Alcott at Johns Hopkins showing that after treatment, you know, over 40% of people are still symptomatic and expressing ongoing symptoms. And 14% of those people have symptoms so bad that it deter. That it causes a loss of their quality of life.
[00:32:25] Speaker E: Right.
[00:32:25] Speaker B: And so a lot of these people have been told that, well, we treated your Lyme disease, and so you should be fine. And the reality is, for some people, that's true. For some people, they, you know, can get it under control. But for other people, there, you know, there's a meaningful percentage, I mean 14, 40%, these are big numbers of people, they may still have an active infection. And then that doesn't even talk about co infections, right? Which, you know, there's Bartonella, there's Babesia, there's anaplasma or lychia. More and more there's the allergy response for alpha gal. Like there's just so many things. Ticks are nature's dirty needle, right? And so you really need to be careful. And it's not just ticks. Bartonella gets transmitted by, you know, flea infestations and lice and any, you know, lots of biting vectors. One of the things people don't realize realize about Bartonella is just adopting an animal, adopting a cat or a dog can actually be a risk factor. And so there's just so much awareness that needs to occur and the research is there and so hopefully that paper can serve as a resource for folks.
[00:33:29] Speaker C: Yeah, that's so wonderful. And so I'm curious what to in research, I mean you're giving the stats at 40% to 14%, you know, what do they see after the doxy course, you know, two to four weeks, you know, what is left? I mean what, what has been done and what is left? I mean what, what can people, what, what do you know about that?
[00:33:53] Speaker B: Well, like I said at this point it's really just that some people respond well and they, you know, and they get, they return to normal activities and then other people kind of have some minimal symptomology but maybe it's not debilitating. That's the 40% and then the 14% are kind of in a camp that there's a scientific case definition called ptlds or post treatment Lyme disease. And these are people that their quality of life is impaired. Some people can't return to work and the reason for that is complicated.
[00:34:27] Speaker E: Right.
[00:34:27] Speaker B: It could be a persistent infection and like I said, there's evidence that that is the case and that the 20, even 28 days of Jackson cycling is not an effective course even longer and or as I said, it could be co infections and misdiagnosed that are often not tested for or that the tests are just really not sufficient to capture.
Or it could be immune dysregulation, it could be gut misfunction, you know, dysfunction just because of a lot of ongoing antibiotic treatment. It's complicated. And that's the challenge with tick borne disease is that, you know, the treatment methodologies that are in the standard of care, you know, kind of the, the infectious disease guidelines are not sufficient. And so people are, doctors, unfortunately are left to their own devices to try and figure it out. And that leads to issues. And that's again, what cla is all about, is like, let's get more scientifically backed, research controlled, you know, studies with, with control groups and placebos and all the things to really understand what the right treatments are. And more of that is coming, but we're just not at the place where we need to be. And I think that the medical system would benefit because potentially could save millions of people from lives of chronic illness and, and horrible situations like my husband and Dr. Spector and many others.
[00:35:49] Speaker C: Yeah. And I mean a lot of medical doctors, I mean, when, when they start to bring up Lyme and then also start treatment beyond, you know, when western blot is negative, I mean, they, they become chastised, you know, for that. So how do we, how do we bring these alternative testings then into the mainstream so they are recognized as, these are more accurate than what we currently have?
[00:36:16] Speaker B: Well, that's why I'm at Galaxy now, right. So on the other side of my journey, I wrote the book, I wanted to raise awareness. I worked with the center for Lime Action, but I'm an engineer by training. I'm also an entrepreneur. I've worked in startups and brought new technologies to the market since like a year out of college.
And so I wanted to solve the problem, right. I don't want other families to go through the hot mess that we went through. And so I researched, as part of my work with cla, I started this and then I kind of continued on my own to basically say, okay, well, the standard of care diagnostic for Lyme disease, right. Research shows that it's 40 to 60% accurate, right. So if you have Lyme and you go to the doctor and you get the standard of care test, you basically have a coin flip as to whether or not you're going to get an accurate result.
[00:37:03] Speaker E: Right?
[00:37:04] Speaker B: And so that's just, that's not okay. It's not acceptable in any other disease state. And so I started understanding, okay, well why is that and what's going on? And then what are the other technologies, you know, the other specialty labs, the other technologies, the other research that's going on to solve the problem? Because there is a lot of really promising research. And so I came across the work at NC State and at George Mason University, and both of those were kind of funneled into a company called Galaxy. And that to me seemed like the best path forward. For a couple of reasons. One, it was backed by peer reviewed, published science.
[00:37:45] Speaker E: Right.
[00:37:45] Speaker B: So that's one of the challenges in, in the specialty lab space is that you can launch a test without having, you know, extensive clinical studies and other types of things. And so Galaxy from its beginning, because it was born out of the research lab, was really focused on peer reviewed, published, published science.
And then two, it was focused on direct detection. And so I'll back up. So the current standard of care, the reason why it's only a coin flip is because it's not a direct test, it's an, it's an indirect test looking at your immune response. So it's an antibody based test. And the analogy I like to use with people is, you know, if you want to know if you have Covid, like right now, do I have Covid? You don't get an antibody test for Covid, right? That's not going to help you. That just tells you you've been exposed to Covid. You get a PCR or an antigen test.
[00:38:36] Speaker E: Right.
[00:38:36] Speaker B: And that tells you that there's direct evidence of that pathogen. Either a DNA evidence or a protein that's, you know, that's spit off by the pathogen, that's specific and says, hey, that pathogen is present, you have an active infection. The problem in tick borne diseases is that those tests haven't existed right there because these pathogens are stealthy because they hide in tissues and they're not free circulating in the blood. The sensitivity when you do these direct detection methodologies, if you do PCR or you do an antigen test, it always comes back negative even if the pathogen is present. Because the limit of detection and the sensitivity of the test is just not good enough.
[00:39:18] Speaker E: Right.
[00:39:19] Speaker B: And that's the problem that Galaxy has been working to solve for decades. So we have technology out of NC State that looks at, for bloodborne pathogens. How do we enrich the concentration of these pathogens? How do we make sure that when we run the test we're going to get an accurate result? By lowering the limits of detection. And we use methodologies by doing multiple draws. We do culture enhancement, we do the most advanced DNA detection that's out there, or PCR detection that's out there. And we combine these methodologies to, to get, you know, accurate detection. And if you look at the studies versus traditional methods in high risk patient population, you get a six times better, you know, more positivity than what you would see with traditional techniques. So you're capturing all these patients that others would miss and then Lyme Disease in particular, is really challenging because Lyme doesn't like to be in the blood.
[00:40:14] Speaker E: Right.
[00:40:15] Speaker B: So a blood based test is not the best approach. And antibody testing is, which is what we have as our standard of care, is also not a great approach because we know from the research that I talk about in that paper, it evades the immune system. The bacteria actively evades the immune system and hides in immune privileged sites. It suppresses the immune system by kind of manipulating our cytokine expression so that, you know, the immune system doesn't respond. That was the case with my husband and with Dr. Spector. Right. Their immune systems were so suppressed after being sick for so long that they just weren't producing antibodies. And that's why they tested negative. Right. Because they just, they didn't have enough antibodies to trigger a response. And so.
But one of the immune defenses of Borrelia is that it spits off these surface proteins, Right. To basically confuse the immune system. You know, think of it as like if you're a submarine, you kind of throw off things behind you so that the depth charges get that and not the submarine.
[00:41:13] Speaker E: Right.
[00:41:14] Speaker B: And so what we do, those, those surface protein are actually filtered through the kidneys. They congregate in the bladder, and then they're excreted in your urine. And so this is, we have a urine antigen test. It's based upon technology that was developed at George Mason University and then commercialized by a company called Ceres Nanosciences, which we have a partnership with.
And we use this technology to, to do accurate Lyme detection. And so published studied results show in a high risk patient population for acute Lyme, the standard of care showed 50%, you know, sensitivity. Our test captured all of the patients, 24 out of 24 tested positive at the earliest onset of symptoms.
[00:41:59] Speaker E: Right.
[00:42:00] Speaker B: So antibodies, the other problem with them is they take four to six weeks.
[00:42:03] Speaker E: Right.
[00:42:03] Speaker B: The most research shows the best time to get treatment is as soon as you get symptoms, as soon as you get that tick bite. But antibodies take six weeks. And so by that time, the, the bacteria is already disseminated into your tissues and it becomes that much harder to, to actually treat. And so early stage disease, it's great. And it can capture way earlier than antibodies. And then also for chronic cases, it's really great. I mentioned, okay, those 14% of patients, why are they still sick? Are they sick because they have persistent Lyme? Are they sick because they have another CO infection? Are they sick because they have immune dysregulation? This test allows you to discern okay, is their antigen still being shut off? Is the, is evidence of the bacteria? It, you know, a lot of the providers that we're working with, they use it as a method to say, okay, is, is it the Lyme that we still need to treat or is it something else that we need to take? And so that was what brought me to Galaxy. And you know, to answer your question, our mission as a company is to change the standard of care.
[00:43:04] Speaker E: Right.
[00:43:04] Speaker B: Like we don't want to just sell tests, we want to change the standard of care and get it in the hands of the lab corps and quests of the world. So we have a lab where we offer testing services for physicians, but we're also going to be pursuing FDA submission. We want to produce products that we can sell to the lab corps of quests in the world. And we have advisors from both companies on our scientific advisory board. So we want to solve the problem.
[00:43:29] Speaker E: Right.
[00:43:29] Speaker B: Because I don't want other people to go through the hot mess that we went through.
[00:43:34] Speaker C: Yeah. Because that, that is essentially is the biggest issue. Biggest issue. I mean there are tests out there, but like you're, like you said, I mean they haven't always been scientifically validated enough for doctors to feel comfortable to even rely on, on those tests. So then they fall back on what exists, which is Western blot, which you know, like you mentioned, we know the, the issues of that and, and exactly that. I mean it takes a while for the antibody to respond. You need to have enough of immune system to have a response and you know, and also you have the, the, the pathogen in itself, you know, goes after the immune system. Yeah. So yeah, so you can't rely on that. So I mean to me that's amazing, you know, that you're bringing this up to the market because that is truly the missing piece for doctors out there to be able to say that yes, this is how we can then see what's going on in the body.
So how is this test available then for the common person?
[00:44:43] Speaker B: Absolutely. So yeah, we have a CLIA validated laboratory that offers testing services. So it's not available directly to consumers. Consumers, but your clinician can order it. So and it's really easy to set up an account and you can, you know, basically order our tests. We have our Lyme urine antigen tests and then we have a blood based test for Bartonella. As I said, the company really started in that space and has been, has best in class. Not only direct detection but also serology, which is really good for treatment monitoring and in the next, next month we'll be also launching that technology for what we call the bbb. So Borrelia, Bartonella and Babesia. And that's a blood based test. And you, you might say well why are you testing in the blood for baby for Borrelia? Because you just said that it's not a bloodborne but that's Lyme Borrelia. There's also relapsing fever Borrelias which are bloodborne. And so it's a, it's a good complement to do the antigen test as well as the blood based BBB test looking for which pathogens are present. And, and that technology at NC State they're doing, they've done and published groundbreaking research really kind of linking Bartonella to a lot of chronic diseases. They're studying its role in, I mentioned schizophrenia, Alzheimer's disease, Panis, Long Covid, all of those are ongoing research studies. And then now they're also have really turned their focus in the last couple of years to Babesia and their finding that a lot of the really challenging cases and the people that are struggling to get better, it's because of Babesia infections and, and sequestering bias that are really difficult and don't come up on traditional tests. So you know, really again needing those lower limits of detection to figure out well what's really on board.
[00:46:36] Speaker E: Right.
[00:46:37] Speaker B: Just because the test says one thing or the other does it? There's two things that could be happening. Either it's not there where the test is wrong and so we're going after the test is wrong piece to make sure that that's not the case.
[00:46:48] Speaker C: And so you mentioned kind of the early, the acute onset, you were 24 out of 24. So chronic Lyme. I mean what, what kind of percentage of accuracy do you, do you feel that, that you have there?
[00:47:02] Speaker B: It's difficult to say because. Right. You know we're, we're basically uncovering patients that other tests can't. And so what we've seen and what we've published, or at least our research partners have published is that in a state, in a survey of a hundred PTLDS patients, so 100 patients, nobody knows why they're still sick. They actually all tested negative on serology. So according to the standard Western, you know, the two tiered test, they're considered cured. Right.
But of those patients, like I said, it could be a mixture of different things leading to their persistent issues. Could be active Lyme, could be other co infections, could be immune dysregulation or Other things In that study, 41% of people still showed antigen presentation. So at a minimum, 41% of those people we show are still having, you know, the presence of antigen in their bloodstream, suggesting that borrelia is still on board. And so can we definitively say that that's 100% of all the patients that were in that study? No, but we're working to understand that and doing further studies in other patient groups to really understand the efficacy of the test. It's just a challenging space, but I think that from what we've seen, it's giving better evidence than any other test on the market in terms of what is your infection status.
[00:48:26] Speaker C: Yeah. And the challenge is that you really don't have a gold standard to compare to, because there's nothing out there that you can really kind of validate your own test. If you have, you know, since you have the best test, you know, you're correct. You're seeing things that other tests are not picking up.
[00:48:43] Speaker B: Yep, correct. And what we do know is because we are on the market and we're having interactions with a lot of our early adopters and physicians and that we're picking up cases that all the other testing misses.
[00:48:55] Speaker E: Right.
[00:48:55] Speaker B: And, and, and some of the more challenging cases too.
[00:48:58] Speaker E: Right.
[00:48:58] Speaker B: Because those are the ones that, you know, when you consistently get negatives on the other test, people go down other, other pathways. And that may, may or may not be correct. And so we think it's a great tool. We're going to, you know, the back the backing of the company in research and peer reviewed science will continue.
And so we're continuing to do studies and as I mentioned earlier, we're looking to do our FDA submission and kind of do the clinical trials associated with that. And so more and more data will be forthcoming and we'll continue to develop the technology. It can be. The urine antigen testing has already been proven in the by George Mason to extend to other pathogens. So it can be more than just Lyme disease. And so that's something that we would like to integrate in our roadmap and really try and holistically solve problems. Problem.
[00:49:49] Speaker C: Yeah, yeah. And, and I mean, question that I know consumers ask, you know, insurance, I mean, is this insurance going to cover this? Is it covering this? I mean, Western blot, you know, in some ways is covered, but. Yeah, where are you at with that?
[00:50:06] Speaker B: So we do have, we do have reimbursement codes, we have CPT codes, and then we have proprietary reimbursement codes that people can use to submit to their insurance.
We do provide super bills that people can use. For those submissions. We've seen a mixture. It really depends on your insurance plan. It depends on what your. What state you live in and what that looks like. We've seen many people get, you know, high levels of reimbursements. We've seen others not do as well. And so that's where we are currently.
Again, as I said, our mission is to. To change the standard of care. And so reimbursement is hot on our list to fix, and we're looking to partner with an expert in that space in 2025 to really figure that out holistically. And so as we go towards FDA approval, we'll also be looking to solve that reimbursement challenge, because that's how you. That's how you solve the problem.
[00:50:58] Speaker E: Right.
[00:50:59] Speaker B: I don't want this to be a test that's just available for people with funds or people that frankly don't have the funds, but have no choice but to spend it because they just feel so terrible. Um, we really want it to be accessible to everybody. So we're not where we'd like to be, but that's absolutely part of our path forward.
[00:51:17] Speaker C: And like you mentioned, I mean, it would be great to have something like this that is affordable for individuals to be able to do it as a preventative measure, you know, to kind of see is something like that lurking in me. So we can jump onto treatment way before you become symptomatic?
[00:51:38] Speaker B: Absolutely. I mean, I can't tell you how many times I've run my samples just to make sure. After all the exposure with my husband and. And I was also a big hiker. And so it's, you know, just, hey, just do some, you know, active screening or. Or if you're feeling off, you know, in some way. I mean, I really encourage people. Listen to your body. Right. Symptoms are. Are signs of your body talking to you, telling you that something's off. And so it's time to listen, slow down, listen and try and figure it out.
[00:52:05] Speaker C: And, I mean, one of the challenges with Lyme is that it also passes from generation to generation. So how. I assume you've tested both of your children?
[00:52:16] Speaker B: Yeah, I've tested. I've tested my son because my son has had a lot of issues, and as it turns out, and you'll read about him in the book, and I didn't really know the full picture at the time, but now through my engagement with Galaxy, I was able to determine that a lot of his issues, which persisted after the book were caused by bartonella. So he actually, after his dad passed, his symptoms started to come back up. I think the stress kind of induced the bartonella to come up and he started exhibiting kind of, you know, ocd, anxiety, all these neurological symptoms. And fortunately, because of my experience with my husband, I knew as I did not know back in the day. And so we engaged with a provider, they put him on an herbal protocol and he's doing amazing now. So, you know, that is absolutely something that's always on my mind is, you know, making sure my kids are safe. You know, my daughter, I have not had her tested, but if she had any onset of symptoms or, or weird things, I definitely would.
[00:53:20] Speaker C: And, and how did. I mean, this must have been devastating. I mean, devastating for all three of you, but I mean, the impact on your children must have been, you know, first you not being able to be there to the full extent, and then seeing their father degrade like this and then your. Their father then leaving and then gradually degrade. I mean, how, how, how are they healing from this?
[00:53:48] Speaker B: Yeah, I mean, it was difficult, I have to say. I mean, one thing, and I wrote about this in the book, you know, the day that I put my husband in the resident care facility, right? I. The kids came home, I talked to them about it, we had a wonderful dinner, we watched a movie, and as we were walking upstairs to go to bed, my 5 year old daughter looks at me and she goes, yay, daddy doesn't live here anymore. And I was like, oh, girlfriend. Like, oh my gosh, that hit me so hard. And it still does. And, but that was the reality, right? And that, you know, out of the mouths of babes, right? It was, it was, it was hard.
But the good news is, is the kids are resilient, right? And, and I, and I took some time off when I placed him in resident care. I just, I walked away from my job. And I was fortunate that Russ and I had done well in our careers and I could just focus on the family for a while. And so I, I just took time off and ended up working out because Covid happened and guess what? We were all home anyways.
And so I got to focus on them and really just, you know, do the best that you can. It's hard. Being a single parent is hard, right? You get two kids and, and you can't be in two places and you just have to manage it. But I've got a great tribe of people around me that help and, and love us and, and they're Both doing great today, you know, and, and going through that with my son was, was scary because it's like, oh, heck, I can't, I can't do this again, particularly with my boy. But being educated and catching these things early before they become a problem, the story can be much different.
[00:55:29] Speaker E: Right.
[00:55:30] Speaker B: You know, his story is much different. And, and, and we monitor it and we look for signs and any issues and, and, and armed with that information, you can have a much better outcome. And so that's, that's what we're trying to do. That's why I do what I do and that's why Galaxy is on its mission.
[00:55:46] Speaker C: Well, Nicole, thank you so much for, for sharing all this information. Thank you so much for, I mean, it's, it's sad when, when you have such a tragic event that becomes a fuel of what you're doing.
And so that, I mean that, that is, it's sad that that has to happen or it doesn't have to happen, but that's commonly what does happen.
I am grateful for what you're bringing in into the world and kind of moving this forward, but because it's so needed. There's so many people struggling out there and they would need to bring this into the mind of the normal physician and recognize that chronic Lyme is a thing and the tests that are out there are outdated, they don't work.
So many false negatives, it's not even funny. So thank you for everything that you're doing.
[00:56:41] Speaker B: No, thank you for having me. And you know, we'll, I'm happy to answer any additional information that, that folks may have. And there's lots of information on social and on our website that people can go for, for additional resources. And I've already mentioned the cla paper, so, you know, for those that are in their journey, I, I see you and I hope that, you know, you can make it through and really get.
[00:57:05] Speaker C: To the other side and have people take this and educate their doctors saying that, hey, there's this test out there that is scientifically validated. Can you run that on me? Can you be a provider that have, you know, that allow your patients to have access to this kind of a test?
[00:57:26] Speaker B: Yeah, and we have a wonderful, you know, head of sales that is just a fantastic educator. And so I think, you know, even if providers are not really familiar with tick borne disease, part of our mission is to educate and to give you the tools. We have a lot of continuing medical education assets already available and we're building upon that because it's, it's a holistic problem, not just from the treatment of the human, but the, the, the healthcare system.
[00:57:53] Speaker E: Right.
[00:57:54] Speaker B: Doctors are scared off because they don't understand, but there are pathways and there are folks that understand this. And, and, and part of our mission is to educate and provide the resources that people need in order to be successful.
[00:58:05] Speaker C: Yeah, that's wonderful. Thank you so much, Nicole.
[00:58:08] Speaker B: Thank you, thank you.
[00:58:16] Speaker A: The Information this podcast is for educational purposes only and it's not designed to diagnose or treat any disease. I hope this podcast impacted you as a disability. Please subscribe so that you can be notified when new episodes are released. There are some excellent shows coming up that you do not want to miss. If you're enjoying these podcasts, please take a moment to write a review. And please don't keep this information to yourself. Share them with your family and friends. You never know what piece of information that will transform their lives. For past episodes and powerful information on how to conquer Lime, go to Integrated and an additional powerful resource, limestream.com for Lyme support and group discussions. Join Lyme Conquerors Mentoring Lyme warriors on Facebook. If you'd like to know more about the cutting edge integrative Lyme therapies my center offers, please visit thecarlfieldcenter.com thank you for spending this time with us and I hope to see you at our next episode of Integrative lyme Solutions with Dr. Karl Feld.
