Latest / Cultural Wars | America Out Loud News / Lymevector-borne disease, neuropsychiatric illness, Alzheimer’s, and the cost of missed diagnosis

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Lymevector-borne disease, neuropsychiatric illness, Alzheimer’s, and the cost of missed diagnosis · Cultural Wars | America Out Loud News

• 0:08
  Really, if we've learned anything from these past couple of years, my following or again's that personal medical freedom and liberty are in crisis.
• 0:19
  I'll marry Ground Long Pulse brings together the top experts and health care related fields to keep you up beaten here.
• 0:29
  Hi, and welcome to the Monday edition of America Out Loud Pulse.
• 0:33
  I'm your host, Dr.
• 0:33
  Mariah Hinshey.
• 0:35
  And this is the place where truth, health, and freedom takes center stage.
• 0:38
  This is the place where we break through medical myths and give you the knowledge to take charge of your body and your family's health so you can prevent and even reverse chronic disease.
• 0:48
  So today's conversation is a very important one.
• 0:52
  It is very personal to me and it is deeply deeply human.
• 0:56
  My guest, Nicole Bell is the CEO of Galaxy Diagnostics.
• 1:00
  But today we're not here to talk about a company.
• 1:03
  We're here because Nicole has dedicated her life to spreading awareness about Lyme and other vector borne infections after losing her husband to the devastating neurological consequences of an undiagnosed infection.
• 1:17
  Nicole is here to share his story and to help prevent this from happening to others.
• 1:23
  And before you tune away, if you think that you know all there is to know about Lyme disease and other vector borne illnesses, I want you to stick around because we're going to talk about things that are seen very, very commonly in a lot of adults and believe it or not, children.
• 1:42
  And these things are diagnosed as primary psychiatric disorders or even dementia or Alzheimer's, and they are far, far from it.
• 1:52
  So we're going to start out by talking about Lyme disease and coinfections and the neuropsychiatric impacts.
• 1:59
  And then we're going to get into Nicole's story.
• 2:03
  So welcome, Nicole.
• 2:05
  Thank you so much for joining us today.
• 2:07
  Oh, thank you for having me.
• 2:09
  Absolutely.
• 2:10
  So before we get into your personal story, I want to ground our audience in the basics.
• 2:16
  Because Lyme and other vector borne infections are still profoundly misunderstood by both the public, but also within mainstream medicine.
• 2:25
  Yes.
• 2:26
  So clinically, when we talk about Lyme disease, I need to make this distinction because a lot of people and a lot of practitioners use Lyme disease as a catch-all.
• 2:37
  And they use it to talk about multiple organisms instead of just borrelia and the species of borrelia that cause Lyme disease.
• 2:48
  So it's important to note that some people, when they say Lyme, are talking about this group of infections, but really Lyme is only caused by the organism borrelia and several species of it.
• 3:03
  So, Nicole, from your perspective and the work that you've done in this space, how do you explain what vector borne illness really means beyond the simplified idea of a tick bite and one disease?
• 3:19
  Yeah.
• 3:19
  So the first thing that, you know, everybody focuses in on ticks, right?
• 3:24
  And ticks are very important.
• 3:27
  And, you know, I call them nature's dirty needle because they don't just carry barrelia, the bacteria causing Lyme, but they cause a whole other host of other bacteria, viruses, parasites.
• 3:40
  And so it's really important if you do get a tick bite to think about all of the things that you might have been exposed to.
• 3:47
  But the reason I prefer vector borne disease is because there's other biting insects that can share things.
• 3:52
  So, you know, a flea infestation in your house, you know, if you've got animals and they're bringing biting insects into your your house in your couch in your bed or whatever, those animals and and those insects can um spread disease.
• 4:08
  And that leads to a lot of complex chronic illness that we see on a daily basis.
• 4:13
  So I think we encourage people to think beyond exposures.
• 4:17
  Um, you know, one of the pathogens that we work a lot with is Bartonella, and you can actually just catch that from a cat scratch or a cat licking an open wound.
• 4:26
  And so there's a lot of different ways these pathogens can be spread.
• 4:30
  And I don't think that the medical community or the general public is aware and has it on their radar screen as much as they need to.
• 4:39
  Yes, absolutely.
• 4:40
  And then also, you know, it's important to note that there are a lot of congenital cases, especially of Bartanella, um, as well as other vector borne diseases, and you know, something that at least when I was a kid, thank God it hasn't come through our house with my child.
• 4:56
  But, you know, as a kid, it's like everybody had lice.
• 4:59
  You know, everyone had to go to the nurse's office and get checked, and you know, lice can spread Bartanella too.
• 5:04
  Lice, mites, fleas, things like that.
• 5:07
  So it's like, you know, a lot of kids and people have these exposures that they are never ever warned about.
• 5:14
  Yep, absolutely.
• 5:16
  And I think that's something that you don't think of when you have this sudden onset of these really weird symptoms.
• 5:23
  You might not think, oh, well, we had a lice infestation in the house, you know, that was the onset, or we adopted a new pet, or there was a spider bite that you know, that somebody got exposed to and into the household, or even horse, there's in horse barns, there's a lot of biting uh flies and so forth that can be shown to transmit these pathogens.
• 5:44
  And so a lot of people, like I say, they think of ticks, and ticks are a huge problem.
• 5:49
  And like I said, nature's dirty needle, so they're important, but it doesn't really uh do a service to the whole way that you can come in contact with some of these pathogens.
• 6:00
  Right.
• 6:01
  You know, and another thing too, I have this conversation with patients all the time.
• 6:05
  Another major misunderstanding is the assumption that these co-infections or each infection occurs in isolation when in reality, like you're saying, nature's dirty needle, you know, whatever that tick had been feeding on, you know, whether it was a mouse or a deer or whatnot, like when they are extracting that blood meal out of that animal, in that blood comes all of the bacteria, viruses, parasites, et cetera, that were inside of that animal, you know.
• 6:38
  And I could, you know, if this were a um a visual podcast here, you know, I could show pictures of like a bird that has like 50 little ticks on the margin of its eye or a deer whose entire face is covered with hundreds of ticks.
• 6:52
  And so, you know, they are definitely being definitely full of these organisms.
• 6:59
  Yes.
• 7:00
  Yes, and and there can be multiple exposures, as we know.
• 7:03
  So, you know, some of these pathogens are in low abundance in the host or in the human, and your immune system can keep them under control.
• 7:13
  But then maybe you get another tick bite and you get exposed to another pathogen, and they start, you know, working together in ways that we're just beginning to understand, and then that leads to an onset of symptoms.
• 7:26
  Maybe you had super mild symptoms that you were brushing off to other things, but all of a sudden, that starts to escalate and then maybe gets a little bit more deep.
• 7:34
  And maybe then you have another assault, like you get COVID, or you have a surgery, or you have something else that happens, and that kind of triggers.
• 7:42
  So when I talk to people about Lyme disease, a lot of times people's understanding is well, I got a rash and then I got antibiotics and I got better.
• 7:51
  And it's so much more complicated than that, because a lot of people want to get the bacteria barrelia, and they have subclinical infections that don't manifest right away.
• 8:01
  They might have other infections that don't manifest.
• 8:05
  Um, and that leads to the onset of a slow, steady chronic condition.
• 8:10
  And that was the experience that I lived with my husband.
• 8:13
  There was no moment where he caught the summer flu, and all of a sudden it was obvious that he was ill.
• 8:19
  It was more of a progression of symptoms that at some point reached a tipping point that got really problematic.
• 8:27
  Yeah.
• 8:27
  When I'm talking with patients, I talk about it as straws on the camel's back.
• 8:32
  So it's like every virus, every bacteria, every parasite, um, every stressor, right?
• 8:40
  Like all of these things are straws on the camel's back, and the camel's back is the immune system.
• 8:45
  You know, and everyone's immune system is is built differently based on, you know, everything from their genetics to their microbiome to their nutrient deficiencies, you know, and a whole host of other things.
• 8:56
  And so, you know, at some point there's that straw that breaks the camel's back and causes severe immune dysfunction, and then, you know, all hell breaks loose.
• 9:07
  Absolutely.
• 9:08
  And that straw could be stress, right?
• 9:11
  It could be emotional issues.
• 9:12
  It could be um, you know, like I said, another infection, but it doesn't have to always be infection-based.
• 9:17
  It's all of the assaults that our immune system deals with on a daily basis.
• 9:21
  So absolutely.
• 9:22
  Yeah.
• 9:23
  So one of the reasons why these vector borne diseases are so often missed is because they don't always present like infections, as you were saying.
• 9:34
  You know, many patients first show up with neuropsychiatric issues.
• 9:40
  So from the stories that you've encountered, why do you think neuropsychiatric symptoms are such a common part of vector borne disease?
• 9:51
  Well, it's been shown in the research that generally when I talk about these the three largest um pathogens that we're
• 10:00
  Seeing and that we deal with are borrelia, the pathogen-causing Lyme, Babesia, which is a parasitic infection, and then Bartonella.
• 10:08
  And so we call them the three B's, right?
• 10:10
  And one of the things that the literature has shown is that the three Bs have an all excess pass to the body, right?
• 10:17
  So there's another three B's, which is the blood brain barrier, right?
• 10:20
  Which is kind of an immune system barrier that protects your brain.
• 10:24
  And a lot of pathogens don't have access to the brain and they can't get in.
• 10:29
  And that helps you stay well.
• 10:31
  But the three Bs, the pathogen versions all have a full access pass.
• 10:36
  And there's been multiple studies, case reports, et cetera, that have shown evidence of these pathogens in the brain.
• 10:44
  And when you have an infection in the brain, it's going to wreak havoc and it's going to take residence.
• 10:50
  It's going to cause all sort of biochemical reactions and cytokines and things that your immune system is going to respond to.
• 10:57
  And then you've got inflammation in the brain.
• 11:00
  And when you have inflammation in the brain, that's going to drive behavioral issues, right?
• 11:04
  Think about your brain on fire or your brain is angry.
• 11:08
  And so that is going to manifest as some sort of condition.
• 11:13
  And that could be fatigue.
• 11:15
  But we also are learning more and more that it actually can lead to pretty severe neuropsychiatric conditions.
• 11:21
  And Bartonella, which is a misunderstood pathogen, has been linked to schizophrenia and studies that have shown that 65% of schizophrenia patients are PCR or you know, direct detection positive for Bartonella.
• 11:38
  And so that cause and effect and the way that we look at disease and the causes of disease is really something that we need to look deeper at.
• 11:46
  And is it something that is genetic or that just happens, right?
• 11:51
  One of the things I've learned in my career is things don't just happen, right?
• 11:55
  There's always a root cause.
• 11:56
  There is always a root cause.
• 11:58
  And that's my engineering background.
• 11:59
  It's like there's always a root cause.
• 12:01
  And what we're learning as we dig deeper into some of these pathogens is that a lot of times some of these conditions are infection-based.
• 12:10
  Right.
• 12:11
  So we know that these organisms drive immune activation and inflammation.
• 12:17
  The immune system gets skewed.
• 12:19
  Some kind sometimes it overreacts, sometimes it becomes almost immunocomised.
• 12:27
  And then we also have this inflammation attacking the nervous system.
• 12:32
  And a lot of times the central nervous system in the brain.
• 12:35
  And so as you said, these pathogens have access through the blood-brain barrier to the brain.
• 12:41
  And I just want to point out that, you know, in children whose blood brain barrier is open and is not formed, they are way more susceptible to these organisms and potentially even like a lighter load of these organisms because they have full-on access to the brain because the brain is open.
• 13:06
  And, you know, there are definitely a difference, and we'll get into this between an acute infection versus a chronic infection.
• 13:16
  But I really want all of you listeners at home to understand that if you see an abrupt change in someone's personality, their cognition, their emotions, anything that has to do with the brain, that is a huge red flag, no matter how old you are.
• 13:37
  Primary psychiatric illness, um, cognitive issues that are that are like structural for lack of a better word, they do not come on abruptly.
• 13:47
  They do not come on overnight.
• 13:49
  And so if you or a child or a loved one has dealt with this, it's super important to rule out infections when you have this abrupt change.
• 14:03
  So Nicole, I think what's hard is that when families begin to understand this, they're really surprised about how deeply these infections can affect the brain and the nervous system.
• 14:19
  Um, you know, a lot, I have a lot of patients with severe anxiety, severe depression, paranoia, OCD, you know, very strong neuropsychiatric symptoms.
• 14:33
  And a lot of times it's kind of it's it's blown off, right?
• 14:38
  Or it's something that's happening in addition to the infection, or it's like, you know, because they've been dismissed for so long.
• 14:47
  But it's actually a real physiological phenomenon that's going on inside of the brain.
• 14:54
  Do you want to address that and describe it a little deeper?
• 14:58
  Yeah, I mean, it really can depend because, like I said, these pathogens have that all excess past, but there's multiple ways that these pathogens can impact the brain, right?
• 15:09
  So they can infect the tissues directly, um, but they can also be in other parts of your body and cause systemic inflammation all around.
• 15:17
  So they don't have to infect the brain to actually cause some of these conditions.
• 15:23
  And I've seen this with lots of different patients, and it and it doesn't have to be a sudden switch.
• 15:30
  And so we see a lot of times, and like you said, these kids are susceptible.
• 15:34
  And sometimes as a kid is growing, it's hard to tell is it something that's changed, or is it just the kid changing?
• 15:41
  Because the kids grow and change all the time and hormones shift and so forth.
• 15:46
  And so we see a lot of kids, you know, maybe it presented initially as ADHD.
• 15:52
  And, you know, we just think this is an ADHD scenario, and this kid's a little hyperactive, but then it starts to progressing into OCD and anxiety.
• 16:01
  And one of the things that I always like to remind people is anxieties become normalized because we have such a crazy culture with our screens and our fast-paced world and so forth, but anxiety is a symptom, and anxiety is something that you should be looking for the root cause of, and and other things, especially if there's anxiety in conjunction with you know, with um some paranoia or with OCD symptoms.
• 16:30
  I mean, in my husband's case, it progressed to hallucinations, and that's where you get the more extreme diagnoses like schizophrenia.
• 16:37
  And so, and as we're learning and as we're testing a lot of these groups within the research, we're finding Babesia in the brain, Bartonella in the brain, barrelia in the brain tissue.
• 16:49
  And we're also learning that some of the most complex cases, it's not an or, it's an and they actually have multiple multiple infections, and there's a synergy with these pathogens that causes, you know, these these more extreme symptoms to occur.
• 17:06
  And sometimes you mentioned that there's different species of these organisms.
• 17:10
  And so there's kind of like cousins that are very similar.
• 17:14
  And you can have multiple of these species on board, and that will further exacerbate the issue and further, you know, cause some of these symptomologies.
• 17:24
  And so again, I think a lot of these things, it's like, well, it's it's normalized, it's okay, but I always tell people it's a symptom.
• 17:31
  It's your body telling you something that is needs to be figured out.
• 17:36
  So something else to bring into this is that primary neuropsychiatric disorders, right?
• 17:41
  Or anxiety, depression, even schizophrenia.
• 17:45
  You don't really have systemic symptoms, right?
• 17:48
  So you're not gonna have night sweats, you're not gonna have chills, you're not gonna have intermittent cyclic migratory muscle pain or joint pain.
• 17:57
  You're not gonna have GI symptoms, you're not gonna have chronic UTIs, you're not gonna have neuropathy, right?
• 18:03
  You're not gonna have all of these other systemic symptoms that usually, not always, but usually will accompany um these infections.
• 18:16
  So, you know, another red flag is multi-systemic symptoms.
• 18:23
  So you are having symptoms in more than one system of the body, okay, and the symptoms come and go, and they can come and go in cycles.
• 18:34
  One of the hallmarks is immune impairment that worsens over time.
• 18:39
  So you start catching everything out there.
• 18:42
  You start having poor wound healing, or another big flag is not responding to any real treatment that your doctor gives you.
• 18:51
  So, like you take this med, it doesn't work.
• 18:53
  You have that surgery or that procedure, it doesn't work.
• 18:57
  Those are huge red flags that you've missed that underlying infectious.
• 19:04
  So we're gonna take a break here from our sponsors, and then when we come back, we will dive into your story, and then we'll touch on those chronic symptoms when we come back in the third cycle.
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• 21:59
  So Nicole, if you're comfortable sharing, I would love for you to tell us about your husband and what his health journey looked like in the beginning.
• 22:09
  Yeah.
• 22:09
  So my husband Russ, um, first of all, just a little background on him.
• 22:13
  So he was an engineer, he was an executive.
• 22:17
  He was probably the smartest person I've ever met.
• 22:20
  Um and I I have a good group of folks that I know, so that's saying quite a bit.
• 22:26
  And um, he was also an avid outdoorsman.
• 22:29
  Um, he was a hunter, he did all of our landscaping.
• 22:33
  He was always outside.
• 22:34
  He loved to hike and ski and do all sorts of outdoor activities.
• 22:38
  Um and he had lived all over the country.
• 22:40
  So he was born in Georgia, he'd been in North Carolina, New Jersey, New Hampshire, California, Texas, like literally all over the country.
• 22:48
  All over.
• 22:50
  And um, and so we had uh he was older than I was.
• 22:54
  Um, and uh we had met in one of the companies that we worked together on and decided, you know, like unlikely couple that was perfect, and um had two kids, and he decided to kind of retire early and be Mr.
• 23:08
  Mom.
• 23:09
  And everything was going great.
• 23:11
  And I was super excited with the life we were building, but then he started to change.
• 23:16
  You know, he started becoming depressed, moody, irritable.
• 23:21
  Um, we were fighting a lot, and we had never fought before.
• 23:26
  Um, and and so we started going to therapy, and it sort of helped, but not really.
• 23:32
  Um, and and again, the arguing just kind of escalated, and it was it was weird and atypical to the point where I thought we were headed for divorce, right?
• 23:41
  I kept saying, maybe early retirement isn't good for you.
• 23:44
  Like maybe you should go back to work, and um, it didn't matter, like just nothing seemed to help, even with all the discussions that we were having.
• 23:54
  And then I started realizing that he was forgetting things.
• 23:57
  So the the time to pick up the kids from daycare, right?
• 24:02
  The the security code to our house alarm was that was the first one that really made the light bulb shine in my head.
• 24:09
  Like, wait a second, this is uh an electrical engineer and computer scientist, and he can't remember a four-digit code, like what is going on.
• 24:17
  And so then I had to have this conversation with this um, you know, somewhat moody individual and say, like, hey, I think something's going on with your brain, right?
• 24:29
  Like you're not behaving in the way that you used to, and something has changed, and we need to go get this looked at.
• 24:36
  And as I started researching and trying to figure out again, I'm an engineer, so I like to dive in and try and figure out well, what the heck is going on here, right?
• 24:44
  He was a very healthy individual.
• 24:46
  And um when I started researching, one of the first things that popped up was Lyme disease, right?
• 24:53
  And I it it made sense to me.
• 24:54
  I've talked to a lot of patients and caregivers in their journey, and sometimes they can go for decades without thinking about tick-borne illness.
• 25:02
  But in my case, because my husband was a big outdoorsman, because I knew he had had many tick exposures, both during our relationship and before.
• 25:11
  Um, I was like, wow, that seems to make sense.
• 25:14
  And um, so in our first doctor's appointment, I had him tested.
• 25:20
  He tested negative because the current standard of care test for Lyme is grossly inadequate, which we can unpack whenever you'd like.
• 25:30
  Yep.
• 25:30
  And I didn't know enough to even test for other co-infections because it was like even just getting to Lyme was was a step forward.
• 25:39
  But then when you tested negative for that, it kind of threw us off the trail.
• 25:42
  Right.
• 25:43
  And so that first doctor said, well, I don't, you know, all of his other labs, and I and she took a pretty extensive list of labs.
• 25:49
  She was an integrated physician that, you know, did a pretty extensive panel, and lot all of his labs were quote unquote normal and didn't indicate anything was wrong.
• 25:59
  And so she was she referred us to a neurologist where he was eventually given a diagnosis of early onset Alzheimer's disease.
• 26:07
  Okay.
• 26:08
  And how old was he at this point?
• 26:10
  So at our first doctor's visit, he was 59.
• 26:13
  Okay.
• 26:13
  Um, and so it, but he again, he was extremely fit.
• 26:18
  Yeah, he was uh had him tested for every genetic, you know, uh mutation for Alzheimer's disease, and they were all negative, so zero genetic disposition towards Alzheimer's.
• 26:29
  And then he was also just declining really fast.
• 26:32
  And in his his pet scan that they did of his brain said that not only did he have Alzheimer's, but he actually had late stage Alzheimer's disease, right?
• 26:43
  So we were just figuring out something was wrong.
• 26:45
  And then the doctors were telling us that he was in the late stages of cognitive decline.
• 26:50
  So it was literally like getting a baseball bat like swung right into your forehead.
• 26:55
  And um, and I went to multiple neurologists and all around where we live and in North Carolina, and everybody just kept giving us the same answer.
• 27:06
  Alzheimer's, Alzheimer's.
• 27:08
  Come back in six months and we'll track your decline.
• 27:10
  And um, and they chastised me for even looking at other things and trying to keep asking questions.
• 27:16
  But um that was that was the current state of medical treatment, unfortunately.
• 27:23
  Wow.
• 27:24
  Did he have other symptoms at the time?
• 27:26
  I mean, obviously, the cognitive were the most um frightening and urgent to solve.
• 27:34
  But in retrospect, were there other things going on?
• 27:39
  So in hindsight, there were a few things that kind of stuck out that never really raised huge flags, but again, there was mood instability that went back to even like years before.
• 27:52
  Um, there was also one time when he was at work when he had a panic attack.
• 27:56
  And you know, we he went to the cardiologist and the doctor was like, You had a panic attack, let me know if it happens again.
• 28:01
  Yeah.
• 28:02
  And it didn't.
• 28:03
  So we didn't really do much about that.
• 28:06
  Um, and but he really didn't have a lot of other symptoms, no joint pain, no rash that we could see.
• 28:13
  It was really all mood and cognitive.
• 28:16
  Now, as he progressed in his disease, some of the joint pain and migrating joint pain and fatigue and other things popped up.
• 28:24
  But at the time we were trying to diagnose him, there really weren't a lot of indicators of other issues that would be traditionally associated with tick-borne illness.
• 28:35
  Okay, so continue on with your story.
• 28:39
  So at one point, you know, actually, it was about uh 15 months after that first uh doctor's visit.
• 28:46
  My brother called me.
• 28:48
  And as it turned out, my sister-in-law had been stuff suffering from a lot of her own health issues, completely different manifestation.
• 28:56
  Um hers was more hormone-based and um presented in a completely different way.
• 29:01
  That's another story.
• 29:03
  Um, but as a result, they finally figured out that the root cause of her illness was was the three Bs.
• 29:09
  She actually had Bartonella, Babesia, and Borillia, which I now know is relatively common to have those co-infections.
• 29:17
  And so my brother's a doctor, and he started researching and he called me and he's like, hey, I think that this is what's going on with Russ.
• 29:23
  And I was like, well, I know I had him tested for Lyme and he tested negative.
• 29:27
  And then he started sharing all the research about how bad the diagnostics were.
• 29:31
  And I had worked in diagnostics before, so I had heard rumblings of that, but I never really pulled that thread to really truly understand the whys and the hows.
• 29:41
  And so he kind of encouraged me to revisit um tick-borne disease.
• 29:45
  And at that point, I found a tick-borne disease kind of specialist in the area.
• 29:50
  They went and kind of did a whole array of additional testing.
• 29:54
  And at that point, he was positive, not only for Lyme, and but that was one of
• 30:00
  We also uncovered that he also had uh Bartonella and Babesia, which weren't even on my radar screen.
• 30:05
  I'd never really even heard of these pathogens.
• 30:08
  And but as I started researching them, it made so much sense, right?
• 30:11
  The the rage that he was having.
• 30:14
  Um that's often associated with Bartonella.
• 30:17
  Um, you know, he was having these after he got out of the shower, he had these weird stretch marks on his torso that I thought it was just from him scratching himself.
• 30:28
  I now know that those are actually called stri A, which are also associated with a Bartonella infection.
• 30:34
  And um, and while he was alive, I actually, because spoiler alert, the story doesn't end well.
• 30:40
  He passed away, right?
• 30:42
  Um, while he was alive, I was really not sure about the Babesia diagnosis because he didn't have a lot of the traditional symptoms.
• 30:49
  You know, you hear about night sweats and um and fatigue and other things, and and he really didn't have a lot of that.
• 30:56
  Um I know after his death, I donated his brain to science, and they found evidence of uh a strain that's really emerging, Babesia Otocolia in his brain.
• 31:09
  And so that was obviously a key issue.
• 31:12
  And as far as I know, when his case is published, that'll be the first case associated with Alzheimer's disease.
• 31:17
  And so um, anyways, we we eventually figured out that Tickborne was the root, but it was that was 15 months after he was given a diagnosis of late stage disease, and he did respond favorably to treatment in a lot of ways.
• 31:34
  Um, but it just we never really got that cognitive piece to start improving or to even stabilize.
• 31:41
  And so in 2019, I made the very difficult decision to put him in a resident care facility because at that point he was a full-time Alzheimer's patient.
• 31:51
  And and I had an eight-year-old and a five-year-old, and I was still working, and it it's like I've done a lot of tough things in my life and my career, but that pretty much broke me.
• 32:01
  Like it was really difficult to manage the children and his condition.
• 32:06
  So in 2019, he went into a resident care facility, and then in 2022, he passed away.
• 32:12
  Um, and as I noted, I donated his brain to science to really continue to get to the root of this issue.
• 32:19
  And they've uncovered evidence of barillia in his brain and Babesia in his brain, and they're continuing to do studies to he also had heavy metal toxicity.
• 32:29
  And so there's some potential confounding factors with that.
• 32:32
  And so again, there's always a reason, right?
• 32:36
  There's a reason why some of these conditions are occurring, and we're still learning from his case, to be quite to be quite honest.
• 32:44
  I'm so sorry.
• 32:46
  And gosh, I just I so appreciate you sharing that story.
• 32:51
  Um, and I mean it's amazing that you donated his brain and he found those things, and that you know, it there's gonna be a study, and he will have helped so many other people.
• 33:06
  Yeah, I mean, and that's what drew me into advocacy, right?
• 33:09
  So I mean, I gotta be honest, I talk about it relatively openly now because I've um that's part of my journey, but it was chaos.
• 33:18
  Like it was my life was complete chaos.
• 33:21
  And so on the other side of him going into resident care, you know, I'm a I'm an engineer, I'm a program manager, I need everything to be in its place.
• 33:30
  And it was just completely life turned over.
• 33:34
  So I stepped away from my job.
• 33:36
  Um, and I I actually wrote a book about the journey called What Lurks in the Woods.
• 33:42
  And it's a really raw portrayal of what it's like to live with these diseases and to um because I wanted to share the story and and even going into some of the best neurologists in my area, and you know, I'm in I'm in North Carolina.
• 33:56
  I live about 20 minutes from Duke University, one of the best medical centers in the country.
• 34:01
  And I remember going into the hospital during the end stages and talking to one of the residents there in the neurological department and started talking about Vectorborne disease and and some of his history, and she looked at me like I was crazy.
• 34:15
  And you know, if you say Lyme or Bartonella or Babesia in the context of Alzheimer's disease, most traditional doctors will think you're crazy.
• 34:23
  Yeah.
• 34:24
  But as I've, you know, dived into the research, I realized there's a lot of evidence that at least for a subset of patients, this is a real root cause.
• 34:33
  And like I said, the the autopsy of my husband's brain shows a hundred percent that that was an issue.
• 34:40
  And so that's why I've started to share and to talk about this is because it's a story that needs to be told.
• 34:46
  And I hope that the horrible journey that my family went through is something that helps people from going down the same path.
• 34:54
  Yeah, I'm sure it will.
• 34:57
  Was there do you can you look back?
• 34:59
  Like, do you remember the moment when you realized that this wasn't just a personal tragedy anymore and like this was a systemic problem and something that I mean, you're basically trying to solve it.
• 35:12
  I knew you well, and I know this is your mission.
• 35:15
  I mean, the so when he when I finally, when we finally figured out that his condition was tick-borne, um, that was the moment I decided to write a book because I was like, people need to know because I had been a year searching for answers and going from doctor to doctor and and asking questions and wondering the whys.
• 35:38
  And everybody looked at me like I was this crazy person.
• 35:40
  And then all of a sudden, you know, after the fact, I find these whys, and I'm like, all right, we need to tell this story.
• 35:46
  And at the time, I thought that the story was going to be about how he got better, right?
• 35:51
  It's like, because the thing about Alzheimer's is you get that diagnosis and there's no hope, right?
• 35:56
  There's no treatment, there's no path where people get better now.
• 36:00
  Some of that's changing, and that's a separate topic.
• 36:02
  But for the most part, it's literally come back in six months and we'll track your decline.
• 36:08
  But if you're talking about a pathogen, right, there's treatments, there's antibiotics, there's antiparasitics, there's methods that you can use to get people better.
• 36:15
  And I was extremely hopeful during those early stages.
• 36:18
  And so I started journaling and I was like, you know, I'm going to tell this story, I'm going to be an advocate.
• 36:23
  And then of course the journey didn't end up being about him getting better.
• 36:26
  It ended up being being about, you know, his continued decline.
• 36:29
  But if anything, that solidified my path even more because it's like, this is how high the stakes are.
• 36:34
  It's literally life or death.
• 36:37
  And it, you know, my children now, my daughter and my son lost their dad.
• 36:42
  And all the time I wonder what would life have been like if he was here to help raise them.
• 36:46
  And it shouldn't have to be that way, because if it was captured early and treated appropriately, then none of that would have had to happen.
• 36:55
  Right.
• 36:55
  I mean, do you wonder how the trajectory of this illness and his treatment would have been different, perhaps if he had gotten a lot a positive Lyme test the first time you tested him, which was a year and a half earlier.
• 37:14
  Absolutely.
• 37:15
  I mean, that's the question that kind of sent me down this path of joining Galaxy and helping to solve this horrible diagnostic problem, because patients should have those answers, right?
• 37:28
  And doctors shouldn't have to guess based upon clinical, you know, really misleading symptomology.
• 37:35
  And so we live in a modern era, right?
• 37:39
  Where the tests should be able to give you the answers.
• 37:42
  And that was part of what drove me to to dive into the fray and say, let's do something better.
• 37:49
  Yeah.
• 37:51
  Okay.
• 37:52
  So we're going to cut to a commercial break.
• 37:56
  Um, before we do, is there anything else about Russ that you would like to share?
• 38:02
  Um I mean, like I said, he was an amazing human.
• 38:06
  And I think when you go through something that devastating, there's a thing like, well, maybe it's just me, right?
• 38:13
  And maybe it's just his story.
• 38:15
  And this is like a small microcosm of of what can happen.
• 38:19
  But once I went public with his story and I wrote the book, I can't tell you how many people reached out and said, Oh my gosh, this is my husband, this is my brother, this is my, you know, whatever.
• 38:32
  And it was so validating because one, I think the story helped them feel seen.
• 38:39
  And um, and two, it it made it really me really even more solidified in the mission of there's gotta be a better answer, and we need to spread this this word.
• 38:48
  And even people in my personal network, it's like, you know, for these quote unquote rare diseases, I sure know a lot of people that are that are impacted.
• 38:56
  And so it's a bigger problem than people think.
• 38:58
  I just think sometimes they don't even know to ask the question.
• 39:01
  Right.
• 39:02
  Yeah, it's a huge problem.
• 39:03
  I mean, and if anyone listening is wondering about incidence, right?
• 39:06
  The CDC estimates about half a million new cases a year just of Lyme disease, not of any of the coinfections.
• 39:14
  And then there was, you know, um, not necessarily a study, but sort of like a review of Medicare numbers and whatnot, and looking at that, it actually looks like the numbers about seven times higher, which would be about three and a half million per year.
• 39:30
  And then I just saw um a statistic the other day, I forget who put it out there.
• 39:35
  I want to say it was the Greater Lyme Alliance, saying that now it's like one out of every seven people have Lyme disease.
• 39:43
  Um, so I mean it's it's not rare.
• 39:45
  It is far from rare.
• 39:47
  And honestly, I think it's something that we all, you know, just in general, we have all of these organisms living in our body.
• 39:55
  And when we are healthy, when our immune system is functioning, the way that
• 40:00
  It's supposed to, and we are managing inflammation in the body.
• 40:05
  We live with a really large pathogen load.
• 40:09
  We are exposed to things 24-7.
• 40:11
  But when we become toxic and we become inflamed and we become stressed out and we have dysautonomia and we're living in fight or flight, you know, um, our body starts to struggle to contain these pathogens, and they start to kind of grow out of control.
• 40:32
  They work synergistically with each other, and then they take a hold, and then we become symptomatic.
• 40:39
  I think that a lot of the Lyme and vector-borne disease that we're seeing out there isn't because, you know, this acute bite that we had six months ago or a year ago went unnoticed.
• 40:49
  I think a lot of us have been running around with this for decades.
• 40:53
  You know, and I know my personal story, which I'm not going to get into.
• 40:57
  You know, I had had borrelia since I was either 10 or 12, you know, and then it wasn't until I was like 35 that I actually became extremely symptomatic because of things that were going on in my life.
• 41:13
  But absolutely.
• 41:14
  We see it every day here.
• 41:16
  Yeah.
• 41:17
  Okay.
• 41:17
  So we're going to take a short break and we'll be right back.
• 41:19
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• 43:07
  Welcome back to America Out Loud Pulse.
• 43:09
  If you're joining us late, don't forget you can catch all of these America Out Loud Pulse episodes on podcast the next day on all of the major podcasting platforms.
• 43:21
  And in this last segment here with Nicole Bell, we are going to talk a little bit more about what chronic Lyme, chronic Bartonella and chronic Babesia can look like.
• 43:34
  So if you know anyone or you yourself have any of these symptoms, um, you can get an appropriate workup.
• 43:41
  We're going to talk a little bit more about the pitfalls in testing.
• 43:45
  Um, but really this does boil down to a clinical diagnosis.
• 43:50
  So let's dive back in.
• 43:54
  So I think I want to hit this point really, really hard leading into this.
• 43:59
  So I think one of the most important clinical truths, again, is that chronic vector porn infections can look indistinguishable from other neurodegenerative diseases and severe psychiatric illness.
• 44:15
  So they can masquerade as these.
• 44:18
  And it's super important that you're working with a medical professional that knows how to tell the difference between the two, because the treatment is night and day.
• 44:30
  So Nicole, based on your experience, why do you think these infections are so often mistaken for dementia or other primary psychiatric disorders or any other neurological condition?
• 44:44
  I think there's a lot of misdiagnosis because it can really manifest as so many different things.
• 44:50
  And then again, it if, you know, it's kind of like the terrain that you have.
• 44:56
  Like if you're healthy, then you might not really have any symptoms.
• 44:59
  It might take decades.
• 45:00
  Like that, that's something where in Russ's case, I think that he had these pathogens on board for quite some time.
• 45:05
  But since he was healthy, it was keeping it at bay.
• 45:08
  And they came out as these subtle symptoms that, you know, just like that doctor said, well, this panic attack is no big deal.
• 45:14
  If it happens again, let me know.
• 45:16
  But it didn't, right?
• 45:18
  And it had to get to the point where he was having these massive conditions and then neurological issues before it kind of elevated to a problem.
• 45:27
  And unfortunately, sometimes a lot of damage can be done in the meantime.
• 45:32
  So I think that the misdiagnosis happens because, you know, again, the symptoms are so variable.
• 45:40
  And then if you're thinking about vector-borne disease, like one, you know, again, people focus on the ticks, and a lot of people don't know they got bitten by a tick.
• 45:48
  Like these, these these little um ticks are extremely small.
• 45:52
  And and the nymph ticks can be, you know, like a freckle.
• 45:56
  And it can be and also it could be in your hair behind your ears and places that you can't see.
• 46:00
  And so a lot of people come and say, Well, I don't remember being bit by a tick.
• 46:04
  And it's like, well, actually, most people with Lyme disease, they don't remember being bit by a tick.
• 46:10
  And by the way, it's not just ticks.
• 46:11
  It's, you know, um, like Bartonella, as you said, can be transmitted by fleas and lice and and other biting insects.
• 46:18
  And so it's hard to have that correlation to the initial infection, and then with the symptoms being so variable based upon where they go in the body, it's really quite difficult for doctors to figure out what's going on.
• 46:32
  Right.
• 46:34
  So just to give the listeners a little bit of an idea.
• 46:37
  So typical symptoms of Lyme disease and understand, like to your point, Nicole, Lyme, Babesia, and Bartanella, they can infect every single cell in the body.
• 46:50
  Therefore, they're going to affect every organ, every organ system, right, in the body.
• 46:56
  So it's going to affect your entire body and how it functions.
• 47:02
  And the reason why I think that symptoms vary so greatly between people is because we all have our various genetic differences.
• 47:12
  We all have differences from, let's say, a previous injury, right?
• 47:17
  We all have these things that our environment has done to us over a lifetime.
• 47:24
  And so I always say, you know, these infections will go to your weaknesses and exploit them.
• 47:32
  So if you tend towards anxiety, you're going to end up with anxiety.
• 47:36
  If you tend towards autoimmands, you're more likely to now have it mimic or even bring on an autoimmune condition.
• 47:47
  If your gut's your weak spot, you're going to have a lot of GI symptoms.
• 47:51
  You know, if you blew your knee out skiing, you can bet that knee's gonna probably have issues, right?
• 47:57
  So for all sorts of reasons, it's going to prey on your weaknesses.
• 48:03
  Um, and symptoms of Lyme, chronic Lyme, can range from honestly, and any symptom anywhere, but typically we can see headaches, neck pain, muscle pain, joint pain, digestive issues, sleep disturbance.
• 48:22
  Um, we can see uh night sweats.
• 48:26
  We can see chills, even though those technically are big Babesia symptoms.
• 48:32
  Um, but we can have cognitive decline, we can have neuropsychiatric symptoms, you know.
• 48:39
  Again, every single system typically is affected with Lyme.
• 48:44
  When it comes to Bartanella, it's often said that there are a lot more of central nervous system or even peripheral nervous system symptoms versus like muscle pain, joint pain, like physical pain.
• 48:59
  So it's often said that like the uh psychiatric symptoms and cognitive symptoms can outweigh the physical.
• 49:07
  Some of the hallmark symptoms I see with Bartanella are um these sinusy type headaches, developing a sensitivity to your environment, whether it's noise sensitivity, light sensitivity, um, having painful soles of the feet, um, panic attacks, um, obviously all the neuropsychic stuff, and then a lot of GI symptoms, believe it or not.
• 49:32
  Bartonella really, really affects the gut in all sorts of ways, but acid reflux can be one as well.
• 49:43
  And then with uh contrasting that with Babesia, again, a lot of sweats, uh, night sweats, chills, anxiety, um, tachycardia or racing heart.
• 49:57
  Um, and you know, technically.
• 50:00
  It causes anemia because it loves to live in the red blood cell.
• 50:04
  It also loves to live in the blood vessel linings.
• 50:07
  But I see a lot of abeisia, and not everybody has anemia.
• 50:11
  You know, a lot of times it'll mess with the ferritin, mess with the iron, um, but does isn't causing outright anemia in that chronic phase.
• 50:20
  And I've gotten to a lot of arguments with a lot of other medical, you know, providers who are saying, well, it can't be Babesia because they don't have anemia.
• 50:28
  And that's just not true.
• 50:31
  Um, there's also a lot of like air hunger, shortness of breath, easily winded with Babesia.
• 50:38
  Um, oh, and then jumping back to Bartanella, obviously, there's a lot of cutaneous issues, issues with the eyes, that stretch mark rash.
• 50:46
  Um, look it up.
• 50:48
  You can find this information, and especially with AI now.
• 50:52
  Um, and if you know how to talk to your AI, like chat GPT and tell it not to hallucinate information and not to just follow, you know, what infectious disease is saying and go to credible sources for vector borne diseases like the international Lyme and Associated Diseases Society or ILADs, you can go to ILADS.org to find more information.
• 51:15
  And also I know Galaxy has a ton of information.
• 51:19
  Um, you know, I think the biggest point is you know your body, you know your family, you know your child, you know it better than anybody else in the world.
• 51:30
  And if you are getting a diagnosis that does not feel right to you, it's not right.
• 51:37
  And don't ever, ever, ever let anyone tell you that this is all in your head and that this is some sort of neuropsychiatric issue causing all of these other symptoms.
• 51:48
  Find somebody that is proficient in understanding and diagnosing and treating all of these issues.
• 51:57
  I implore you to.
• 51:59
  Yeah, and I can't echo that enough.
• 52:01
  And I love that you said it because I think I've talked to a lot of patients and caregivers that have suffered and really struggled to be heard by the medical community.
• 52:10
  And it's really difficult when you're talking to a doctor, right, with all this schooling and all this knowledge, and they say, nope, that's not it.
• 52:17
  And so what I tell them is like, look, you may not be an expert in medicine or infectious disease or any of these things, but you are an expert in you.
• 52:26
  Right.
• 52:27
  Nobody else is an expert in you.
• 52:29
  And so you know when something's wrong.
• 52:32
  And then the other thing is those those symptoms or things that are telling you what's wrong, and you have to find that doctor who's willing to go on that journey with you and listen and figure out the root cause.
• 52:43
  Because just like Russ's scenario, you know, you don't start having these symptoms for no reason, right?
• 52:50
  Like there is a reason.
• 52:52
  And there can be many reasons, and there can be a lot of different paths that you can go down to figure out those reasons, but there are reasons.
• 52:59
  And so finding a doctor that will go on that journey with you is sometimes difficult, but it's essential.
• 53:05
  Um, and I think there are ways to really address and we don't have to just say, well, it's okay to be anxious, or it's okay to be in pain, you know, I'm getting older, or I'm everybody's like this.
• 53:16
  It's like, no, this is something that you really need to address.
• 53:20
  Absolutely.
• 53:22
  Okay, so let's talk about testing.
• 53:25
  Let's let's quickly go through the pitfalls.
• 53:28
  I mean, I'm just gonna say it as flat out as I possibly can, you know, getting tested for Lyme disease through conventional labs.
• 53:35
  And, you know, I hate to name names, but labs like Quest, labs like Lab Core, hospital labs, you have the same odds of testing positive for Lyme as you do flipping a coin.
• 53:50
  It's actually less, believe it or not.
• 53:53
  Yeah, yeah.
• 53:54
  Yeah.
• 53:54
  So talk us through the pitfalls of conventional testing.
• 53:57
  And by the way, testing for Lyme, testing for borelia does not test for Babesia, Bartonella, or Lichia, anaplasma, ricketia, mycoplasma, chlamydia pneumonia, or any of the other viruses.
• 54:11
  Yeah.
• 54:12
  So I think the fundamental thing that it's important to understand is that these are really low abundance pathogens, meaning that they're in very small quantities and they also hide in tissues, right?
• 54:26
  So just I like to use the analogy of COVID, right?
• 54:30
  Because when you think about COVID, if you want to know if you have COVID, you go get an antigen test or a PCR test.
• 54:36
  And that tells you whether you have, you know, the pathogen on board.
• 54:40
  The problem is is because these are stealth pathogens, those types of tests are not sensitive enough.
• 54:47
  And so as a result, you know, you can't use those methodologies.
• 54:51
  And what they do use instead is antibody testing.
• 54:55
  And antibody testing is useful, but it's also really complicated because antibodies are a measure of your host immune response, right?
• 55:05
  If I have a pathogen on board, I can have a healthy immune response, and that can mean make large high antibody titers, um, or you can maybe not have an immune response.
• 55:15
  So there's a lot of variability because it's person to person and we have genetics, exposures, toxins, all sorts of other things that can influence that.
• 55:24
  The other thing that's wrong about antibodies is right, immune system takes a while to develop, right?
• 55:30
  So it can be four to six weeks or longer before those immune, you know, those antibodies actually reach high enough levels to be detected.
• 55:38
  And the problem is for these tick-borne pathogens is that that's the treatment window when the current therapies and antibiotics are the most effective, right?
• 55:47
  So you want to get it as soon as you've got the pathogen on board and get the appropriate therapies.
• 55:53
  Once you've had it in your body a while, it can kind of disseminate into all those different places all over the body, which make it more difficult to treat and more difficult to detect.
• 56:04
  And so the current standard of care for Lyme is an antibody-based test.
• 56:08
  And as a result, you have all those factors that I just explained that make it difficult.
• 56:14
  And again, you want the testing to be accurate in the acute stages of the disease.
• 56:20
  And a 10-year study was published by Bay Area Lyme in the middle of last year that showed that for acute stage disease, the standard of care is 23% accurate.
• 56:32
  And that's why I say it's actually worse than a coin flip.
• 56:34
  So, like it hurts me as an as an engineer and a scientist to know that you can go to the doctor, they can run a test, and that test is only 23% accurate as to whether or not you have the pathogen on board.
• 56:49
  And that's just not okay.
• 56:51
  It's not okay.
• 56:53
  Yeah.
• 56:53
  And then the other problem with antibodies is that it just tells you that you've been exposed.
• 56:57
  It doesn't necessarily tell you you have the pathogen on board right now.
• 57:00
  So going back to my COVID example, right?
• 57:03
  I have COVID antibodies, but that doesn't mean I have COVID right now.
• 57:07
  And then some people that have a hyperimmune response, right?
• 57:11
  If you think about autoimmunity and if you think about people that have their at their immune system is on turbo drive.
• 57:17
  So they produce antibodies to everything.
• 57:19
  And that might confuse doctors because if you're using antibodies to as a test measure, it's like, well, do you really have these seven pathogens on board?
• 57:27
  Or do you have maybe one or two or three?
• 57:30
  And then all these other antibodies are getting elevated because your immune system's on overdrive.
• 57:35
  This is America Out Loud Pulse, where truth, health, and freedom takes center stage.
• 57:39
  Until next time, remember, knowledge gives you the power to heal.
• 57:43
  We'll see you next Monday.