THINKWELL

AGEWELL

Hidden Infections, Cognitive Decline, and the Search for Answers

Dr. Heather Sandison, ND (00:00.945)
Welcome back to the Think Well, Age Well Podcast. I am your host, Dr. Heather Sanderson. Today’s guest is bringing together the mind of an engineer, the heart of a caregiver, and the determination of a true advocate. Nicole Bell is an author, entrepreneur, and CEO of Galaxy Diagnostics, a company dedicated to improving the diagnosis of Lyme disease and other tick-borne infections. Her path to this work was not one that she actively chose.

It was born from tragedy. After years of searching for answers, Nicole’s husband was ultimately found to be suffering from a severe tick-borne illness that had been misdiagnosed, at times even raising concern about early onset Alzheimer’s disease. Rather than allowing this experience to end in loss, Nicole has transformed it into a mission. Through her memoir, What Lurks in the Woods and her leadership at Galaxy Diagnostics, she is working to change how we think about chronic illness.

Stealth infections, and the gaps that unfortunately still exist in modern medicine. Nicole holds degrees from MIT and Duke University in engineering and biomedical engineering. Her greatest expertise comes from walking alongside someone she loved through a devastating medical journey and refusing to stop asking questions. Nicole, I’m delighted to have you here. Welcome to the Think Well, Age Well Podcast.

Nicole Bell (01:25.176)
Thank you so much.

Dr. Heather Sandison, ND (01:27.139)
Your story begins with this deeply personal health crisis. Can you take us back to the beginning of that journey and what kind of that time when you first realized that something more than stress aging, typical aging, was happening with your husband?

Nicole Bell (01:44.343)
Yeah, I mean his first presentation was all mood-based. You know, he was depressed, he was anxious, he was irritable, sometimes kind of nasty. And so we were going to therapy, we were trying to work it out, but that moment when I realized it was something

Deeper was really when he started forgetting things, right? He started forgetting the time to pick up our kids from daycare. He forgot the code to our house security system. And you know, this was a brilliant engineer who was electrical engineering, computer science, and all of a sudden he was struggling with some basic tasks. And that was the moment. He was 59 when we first realized and started going to the doctor. And then he was age 60 when he

Dr. Heather Sandison, ND (02:24.092)
And how old was he?

Nicole Bell (02:32.772)
He was diagnosed with early onset Alzheimer’s disease. That was his official diagnosis.

Dr. Heather Sandison, ND (02:38.138)
Wow, so this forgetfulness, this this cognitive changes in his fifties and early, early sixties, right at 60, what did that experience kind of teach you about the overlap between neurodegenerative conditions and hidden infections?

Nicole Bell (02:54.476)
Yeah, I mean, honestly, the whole experience changed my view of our healthcare system and of how we should look at symptoms and how we should look at chronic illnesses. Because, you know, and I actually thought about Lyme disease very early on. We went to the doctor and they tested him for Lyme, and he tested negative with the current standard of care. And I didn’t even know enough to test for common coinfections. And so

Dr. Heather Sandison, ND (02:59.758)
Yeah.

Nicole Bell (03:23.254)
you know, that led us to be misdiagnosed for an extra fifteen months, right? He had probably already had these pathogens on board for years, slowly doing damage because, you know, outwardly he was extremely healthy. He was, you know, a hiker, a biker, he would do all sorts of act you know, outdoor actor outdoor activities. but there was kind of this smoldering problem that eventually came to a head. And

Now I realize that you know pathogens can manifest in a lot of different ways, right? And and neurological these, especially tick-borne pathogens or vector-borne pathogens, they have a lot of neuro neurological components. And I never would have thought his anxiety and his mood disorders were an infection when they first happened. But now doing this on a daily basis, I realize that’s actually quite common.

Dr. Heather Sandison, ND (04:14.662)
So tell me about, you know, you mentioned that this changed your entire perspective of medicine, of modern medicine. Can you just walk us through that? Like what did you think before and what do you believe now?

Nicole Bell (04:26.604)
Yeah, I mean the f the first thing that I think anybody who’s dealing with complex chronic symptoms is, you know, when we went into that first doctor’s visit, I really asked her to dig deep. And this was an integrative medicine medicine physician. It wasn’t just kind of a standard primary care physician that would see us in fifteen minutes. and she ran a pretty comprehensive workup and I remember getting pages and pages of results of his lab work being

Nicole Bell (04:57.248)
And so I think the thing that that I learned is really you need to dig deep and you need to figure out if you know that something is going on with yourself, your loved one. don’t accept that you know your labs are normal and then move to some sort of symptomatic-based diagnosis because.

A lot of what people in complex symptoms end up with is these diagnoses, which really aren’t root causes. I mean, even Alzheimer’s disease is not a root cause. It’s a manifestation of the neurodegeneration that’s going on. But we see people every day with chronic fatigue syndrome, fibromyalgia, idiopathic idiopathic arthritis, you know, all sorts of things that

really digging a layer deeper and then also advocating for yourself. It was really quite

Disheartening, you know, when I would go into the neurologist and I would ask questions, they almost chastised me for asking questions in the first place, right? And that is what disillusioned me about our current care system, is they’re really just designed to get you in and out of the office, give you a prescription that may or may not be helpful, and and the lack of root cause analysis was something that was really frustrating to me.

Dr. Heather Sandison, ND (06:12.764)
So you mentioned that you had actually done Lyme testing and it came back negative. Talk us through how that could happen.

Nicole Bell (06:20.95)
Yeah, so

A lot of people don’t realize the current standard of care for testing is actually often incorrect, especially for early stage disease. There’s been multiple publications by Bay Area Lyme and others that show that in the earliest stages of disease, it’s, you know, over 70% inaccurate. So it misses over 70% of cases. And a lot of the dogma in the literature would say, well, that’s just early stage disease. And the reason that that happens is because it’s an antibody based test.

Right, so it’s looking for the host’s immune response to the pathogen, but antibodies can take four to six weeks to peak, and so you’re gonna miss the early stages of infection. The problem is that’s when the pathogen is the most treatable. Once it disseminates into tissues, it becomes a lot more difficult.

But the dogma would say that for late stage disease, antibodies is actually pretty effective. But what I we saw with my husband and what we see with a lot of other patients is actually that’s not the case because if you have somebody who has been sick for a while.

And their immune system is dysregulated. They may not be producing any antibodies, or they may be producing such low quantities of antibodies that it doesn’t trigger the results. Then we have other patients that are hypersensitive and they’re literally producing antibodies to everything because your immune system is triggered by something, but the antibody that you’re testing for may or may not be what’s actually causing that immune dysregulation. And then it’s been shown in what was that?

Dr. Heather Sandison, ND (07:51.227)
Because of cross reactivity. Yeah, because of like cross reactivity where one will mimic another and so you have you might not have that infection present, but you are getting this the essentially the signal that there’s an immune response to it.

Nicole Bell (08:05.73)
Yes. There’s often cross-reactivity in antibodies. And then also, you know, if your if your immune system is hyperreactive, it’s just going to take anything you’ve been exposed to, those memory cells, and they’re going to upregulate and it’s going to cause, you know, it’s going to cause issues. And and then even in some scenarios in animal models and humans, it’s been shown that some people just don’t have an immune response, right? They these pathogens are stealthy for reasons we’re still beginning to understand. You know, it’s been shown in monkeys, for example, that even a

Of monkeys that are established or infected by the exact same strain of bacteria, some may have a very strong immune response, and others may not have any immune response. And so using antibodies as a basis of diagnosis is really complicated. And it, you know, it can miss early stage disease, it can miss late stage disease, or it doesn’t help you if you know you’ve been affected, you know, infected previously, just like I have COVID antibodies, right? But I don’t have COVID right now.

is a challenge when you have somebody who lives and knows that they’ve had exposure to Lyme or other tick-borne pathogens. And so it’s really quite common for patients to be misdiagnosed.

Dr. Heather Sandison, ND (09:17.316)
And I my understanding is also that these tick-borne infections often are actively suppressing immune function. Is that true?

Nicole Bell (09:24.182)
Yes. So they’re actively suppressing and evading. and there’s multiple studies that have shown kind of the microbiology.

Of this. It you know, it changes the cytokine expression, it changes T cell reactivity. It actually just physically evades the you know borrelia, the bacteria-causing Lyme, sw swims faster than any of your immune cells. And it hides in immune-privileged sites like the brain, the joints, and places where the immune system doesn’t have full access. And so again, you have a pathogen with a whole bag of tricks to evade.

and suppress the immune system and then what are you using to measure it? A measure of immune response. And so that is one of the challenges in why the testing can be misleading in many cases, including my husband’s.

Dr. Heather Sandison, ND (10:15.772)
And you also mentioned when your husband was being tested, you didn’t understand that there were co-infections. So will you you mentioned Borelia, Borrelia brickdorfry, which is the Lyme spirochete, often what people are referring to when they say Lyme disease, but there are these other tick-borne infections that often come together. So would you help us kind of take us through the journey of you and understanding that? Like, okay, there’s more to it than just Lyme.

Nicole Bell (10:40.94)
Yeah, I mean that’s one thing is Lyme rarely comes on its own. There’s usually some sort of immune dysregulation or other infections that go along with it. And so in the case of my husband, he had a common tick-borne co-infection of Babesia. but actually it it wasn’t so common. I’m still uncovering the nature of his disease. So he tested antibody positive for a strain of Babesia that’s or a species of Babesia that’s typically

on the West Coast where we had lived, so it wasn’t out of the realm of possibility, it was Babesia Duncanai. But his symptoms really didn’t reflect what was known about that pathogen. And so I always kind of questioned that diagnosis because again it was antibody-based.

And you know, spoiler alert, my my husband’s story didn’t end well. And so when he passed away, I I donated his brain to s to science and to people that are studying the role of microbes in Alzheimer’s disease in the pathobiome. And as it turns out, they found a whole new species of Babesia called Babesia Otiae. And that Babesia is a sequestering Babesia and

acts differently and it’s also in a lot of the ticks up in Pennsylvania where my husband was always in the woods you know hunting and shooting and doing all sorts of other outdoor recreation activities and so that was one. And then another vector borne infection is Bartonella. And they call them the three bees barrelia, Bartonella, and Babesia. And they often come together in these really complex cases. And unfortunately in his case he had all three.

Dr. Heather Sandison, ND (12:21.201)
I’m so sorry for your loss, Nicole. I’m sure that that has been I mean just a profound journey. and I’m I’m so impressed by your, you know, your transformation of this tragedy into advocacy and support of others. So thank you for the work that you’re doing.

you mentioned that he had spent time in Pennsylvania, so I want to talk about geography, but also remind people or or inform people that it’s interesting, I think, that we don’t all realize, you know, lime is a spirochete with persister forms and cystic forms that is a bacteria. Babesia is a bloodborne protozoa or a a

Is it a protozoa? It is a protozoa. It’s a parasite. It’s a blood parasite, similar to like a malaria. And then Bartonella is another very different type of bacteria. And so I think a lot of people don’t realize like you can’t just take doxycycline. You can’t just take antibiotics real quick and be done with this. It is really much more complex than that. So maybe if you want to talk about that, and then we’ll talk about the geography and what people need to know about where they’ve lived, where they’ve been, where they could potentially be exposed to these.

Nicole Bell (13:05.72)
Burzoa, yeah. Mm-hmm.

Nicole Bell (13:35.565)
Yeah, so it’s a great point. I mean, all of these pathogens are very different and they have different treatment modalities. So even though Bartonella is another bacteria, it will not be impacted significantly by doxycycline. And so generally it’s got a different type of like either rifampin or rifobutin or other combination antibiotics.

Babesia is a parasitic infection, and that treatment is very similar to what you would see for malaria. And so, and I think these pathogens, in terms of the regional distribution, particularly for Lyme disease, there’s always been a thought that, it’s just the Northeast or the upper Midwest. But I think as we test more and more places, we realize that’s not true. I mean, California has been demonstrated to have significant levels of berillia.

Bergdorfrae in ticks. Even in my now home state of North Carolina, which is thought to not really be an endemic area, they just did a study out in the western part of Carolina and found that thirty, thirty-three percent of the ticks, the black legged ticks, had Lyme disease or had beryllium in them. So it’s definitely spreading. You know, these ticks populations are on the rise, they can travel with you know, on birds along

migration routes and so it’s it’s pretty much an everywhere problem at this point. And for pathogens like Babesia and Bartonella, those are even more widespread than I think people realize. You know, I think our Galaxy’s founder, Dr. Breischwert

always said, you know, that Bartonella is more prevalent because it has more vectors, because household cats are actually a reservoir for Bartonella. And so he has always said that he thinks it’s way more prevalent than Lyme disease. And the more that I do this, I realize that I I believe that that is true.

Dr. Heather Sandison, ND (15:26.364)
Yeah.

Nicole Bell (15:26.862)
I think a lot more people are exposed. It’s just that their immune systems can keep it in under control. But then if you do get another pathogen like Lyme disease or, you know, barrelia or Babesia, then all of a sudden your body kind of reaches this tipping point and you d you start descending into illness.

Dr. Heather Sandison, ND (15:43.622)
Mm some people listeners might have heard of Bartonella also called cat scratch fever. So and fleas, spiders, other other

Vectors. Other insects can transmit this, not just the deer ticks. So there’s other ways that we can get it. Often comes with like the stray, or it looks like stretch marks in a place that you wouldn’t expect them, or if there hasn’t been a lot of weight gain, weight loss. So an interesting one to be aware of. Now you mentioned that there are people who but many, many people have been exposed, and I’ve certainly seen this in my clinical practice where people are testing positive but have no symptoms, and then someone else testing.

Negative has a wild amount of symptoms, and maybe even had a bullseye rash at one point, has a clear exposure to this, and they’re debilitated but testing negative. So maybe even using your engineering background and your scientific training, I’m wondering if you can help us understand like how does this happen that we have people with regin, what looks like a regime infection on a test with maybe known exposure but no symptom, and then other somebody else with a test that

test that looks negative but debilitating symptoms. What is going on and how do we test how do we how do we use a better test?

Nicole Bell (17:02.678)
It’s a challenge, and I think my you know, in my husband’s case, I believe he had these pathogens on board for years before they came became you know to a head where he was clinically exhibiting symptoms. And I think that it’s our immune systems are very complex, right? So they c we know that we have a whole host of pathogens that are on board, and and sometimes your immune system can keep them at bay, and then at some point you might reach a tipping point or the bucket.

Whatever analogy you want to use, where now all of a sudden you tip into a state of unwellness, right? And we see this all the time, where somebody maybe had some minor symptoms, but things that we just chalk off to daily life. Maybe I have some migraines, I’m tired, I’ve got some mood swings, like things that it seems like in our society everybody’s dealing with, but then something happens. You maybe you’ve got COVID, maybe you went to a surgery, maybe you had.

Trauma and or a stressful period in your life, and now all of a sudden things become debilitating. And we see this quite commonly. And I think that the immune response is very variable from person to person, and that’s those factors we still don’t fully understand. But you know, I think my husband had probably been keeping these pathogens at bay for a while. But by the time I clinically tested him, his immune system, if you look at his overall antibody titer.

They were very low, like his immune system was fatigued. And and so it is a complex environment, and that’s one of the reasons why at Galaxy we focus on direct detection, right? We don’t use the immune system and antibodies. It’s a useful tool, but it’s one tool. And you know, if you think about other infectious disease areas like COVID, for example, if you want to know if you have COVID, you don’t get an antibody test, right? That would almost be laughable from the doctors because I

I have COVID antibodies, but I don’t have COVID right now, at least. And and so you’re you’re gonna use a PCR test or an antigen test to determine whether or not the pathogens are present. But with these stealth pathogens, you know, like you said, they actively evade the immune system, they’re in low numbers. That’s really been challenging because conventional approaches haven’t been sensitive enough. And so that’s the key problem that we’re trying.

Nicole Bell (19:25.358)
To solve a galaxy is how do you make the direct detection tools sensitive enough that it’s useful to determine whether or not the pathogens on?

Dr. Heather Sandison, ND (19:34.001)
And can you describe direct detection? What does that mean?

Nicole Bell (19:37.569)
It means you’re looking for something specific that’s related to the pathogen and shows that the pathogen is present. So an antigen-based test could be looking for a protein or some other molecule that is shed by the pathogen, for example. So, so for example, for Lyme disease, we use a urine antigen test. So, as part of its immune evasion, as part of its life cycle, borrelia actually sheds a lot of.

Proteins and sugar molecules kind of into this environment. And a lot of those molecules or biomarkers get filtered out of the body by the kidneys and then they aggregate in the urine and it’s you know and they’re excreted. And so you can use that as a diagnostic tool to determine whether or not the pathogen is present. In other cases, you can look at looking for either the DNA or the RNA of the pathogen.

Itself, right, and show that that’s present. And that’s what we use for common co-infections like Bartonella and Babesia. There, we’re looking for, and and again, they’re low abundance pathogens, so you have to use enrichment techniques and you have to use high sensitivity methodologies to detect, because if you just run a traditional PCR, it’s likely gonna be missed.

Dr. Heather Sandison, ND (20:54.169)
And you I mean, you guys are are really focused on improving this detection. And I I think part of the reason why, if I understand rightly, is or correctly, is that an accurate diagnosis matters a lot. Do you think the trajectory of your husband’s treatment would have affected the outcome? Like, do you think he might still be here today if you had had an accurate diagnosis and then could have started treatment?

Nicole Bell (21:20.128)
Absolutely. I think the earlier and the more accurate that you can diagnose, the better chance that you have. Now, that being said, there are some limitations of existing treatments. The later that you get, the more

Patients, you know, the therapies are to fail patients. And so, but in my husband’s case, that’s what drew me into this diagnostics field, is I kept thinking back at that first appointment, if we had tested positive, how would his trajectory be different? If I had understood that he had this species of Babesia that’s different from the one.

Was actually diagnosed off, you know, with that behaves differently, then you know, because we didn’t really adequately treat the Babesia because that was kind of a question diagnosis for him, and so if we had treated that earlier and more

completely would his case have been any different. And so as you mentioned, right, these those three pathogens alone all take different therapies. And so if you don’t know which one you have, it’s gonna really be difficult to get well because they’re all different and the symptoms overlap immensely.

Dr. Heather Sandison, ND (22:27.656)
And you know, I one of my favorite things is talking to the lab, people at the lab companies about treatment, because you guys are seeing all these labs come through from all over the country, probably all over the world. And so are there particular strategies of treatment you see are getting better outcomes?

Nicole Bell (22:46.54)
I think that one thing that seems to be universal, because it’s really difficult to say anything universal in this space, right? Because everybody’s so individualized. But I think one thing that is universal is that it’s not just enough, especially for complex, you know, later stage disease, it’s not just enough to kill the pathogen. You really need to support the immune system and think holistically about the person. And I think that the the

The providers and the patients that are getting well are the ones where they’re looking holistically. I think we see herbal therapies as very effective within this space. And when you’re thinking about immune support and all of the integrated parts of our body, gut health, you know, detox and all sorts of other things, that that’s when we see the most progress. But again, if you’re not

fully aware of which pathogens are on board, you might be missing something. And we do see a lot of patients that have been under treatment for years for Lyme disease or years for Bartonella and not getting better. And then we run testing and we’re like, well you have an undiagnosed case of Babesia. Or you know, you really don’t you’re we don’t pick up any evidence of Lyme, but

we are still seeing Bartonella, has that been treated effectively. And so those are the types of things that we really hone in on is making sure that the doctor knows exactly what they’re fighting.

Dr. Heather Sandison, ND (24:15.708)
Yeah, okay. And you know, there are these pretty aggressive treatments. I was talking to Doctor Rich Horwitz recently about his DAP zone protocol. We’ve had patients go to Germany for hyperthermia. there’s kind of some far out t treatments that happen in Tennessee that it sound a little more homeopathic but people have claimed to get benefit from. You know, if you’re s if

If you were kind of evaluating some of those more aggressive treatments for your husband, how would you think about that? How would you navigate that?

Nicole Bell (24:47.916)
Yeah, I mean my my husband was on some pretty intense antibiotic therapies, you know, very broad spectrum. I mean, obviously not completely. I think that there were a lot of benefits that he saw and a lot of his symptoms did go away. I think the neurocognitive piece never quite improved. And the reasons for that I still don’t know. I mean, his as I said, I donated his brain to to really help uncover.

Dr. Heather Sandison, ND (24:53.074)
And were they effective?

Nicole Bell (25:17.314)
What was going on. And to me, the presence, the DNA of Babesia Otacole in his brain shows that there were still live pathogen in his brain tissues at the time of his death. And so if I had to pinpoint one thing, I would probably pick that. But as I said earlier, it’s never just one thing. It’s always, you know, many things. He also had, when his immune system got suppressed, you get elevated viral titers. He also had heavy metals like mercury.

And lead from some toxin exposures. And so I think unraveling these really complex cases is something where we need more evidence and more science to really determine what is effective and what’s not. But it’s gonna require a personalized medicine approach, not a one-size-fits-all, you know, type clinical trial.

Dr. Heather Sandison, ND (26:09.57)
One of the most frustrating experiences patients can have is being told that their symptoms are all in their head, that referral to psych. What advice would you give someone who knows something is wrong but they’re not getting clear answers?

Nicole Bell (26:17.357)
Yes.

Nicole Bell (26:25.814)
We this happens to so many patients and I I really feel for them because it is such a challenge when you’re looking at a doctor who I mean we perceive them as experts in their field, right? They have the education, they have the the degrees and the pedigree and when they tell you something’s wrong or is not wrong, you know, and it’s all in your head, that is a devastating moment. And what

said to people in those conditions is like, look, you might not be an expert in tick-borne disease or whatever the issue is, but you are an expert in you and you

Expert in the person that you’re caring for. And so if you don’t like the answers that you’re getting, keep digging. And you know, I think unfortunately, this is where you know, we’ve talked to many patients that have been to over a dozen doctors trying to find somebody who would listen to them. And hopefully, that that you know convergence upon somebody who will help you and go on the journey with you will get better. I think as more doctors get trained, and as a lot of

Educational materials and content get out there in this space, it will get better. But in the meantime, you’re not crazy. There’s so many documented cases of how this I mean, my husband was hallucinating, right? Like it it is in your head, meaning the pathogen is in your head. And so and that really changes everything. I mean, he was the most logical, the most straightforward engineer that you would ever meet. And

In the height of his illness, he told me that there was a man in my woods swinging from the trees, carrying a machine gun. And you’re like, wait a second, I don’t even know how to reconcile this in my brain. And so it would be really easy to give him a psych diagnosis, right? But that’s not addressing the whys. Why did this right?

Dr. Heather Sandison, ND (28:22.856)
Right, a Louis body. You know, that sounds like frontotemporal or l well more Louis body, probably, right? and and and as you mentioned, Alzheimer’s Louis body

Frontotemporal dementia, Parkinsonianism, all of these things. That’s not, that’s an ICD 10 diagnosis code, but it’s not an answer to why. Why is there a neurodegenerative process happening? And I think these tape-borne infections can be part of the why. Often, as you mentioned, it’s multifactorial, right? So it’s toxins on top of major stressors, on top of nutrient deficiencies, on top of sleep deprivation, on top of all these things that can affect the immune system and then make it so that the infections are winning, right?

Immune system is losing the battle. that is so challenging. I’m so sorry. I mean, you went through this process and you’ve lived this journey as a wife, a caregiver, now a widow, an author, and a CEO. Looking back, you know, you must have so many lessons about resilience and the process of grief and healing. And what would you share with people who are on that journey now?

Nicole Bell (29:31.929)
Ooh, I mean the grief journey is hard. I remember s there were many, many times when I was sitting on the floor of my closet just crying, right? Feeling completely at at a loss for what to do and how to move forward. And, you know, we had two young children, my husband was declining. I was trying to navigate his care, my navigating growing, you know, two young children and being a mom and and then my job. It was just it was it was awful. And

I think one thing that helped me was was journaling and and studying. That’s what led to my book where I I did that primarily as a mechanism to heal and to understand the lessons from the chaos. Because I think it would have been easy. Well, actually I don’t know if it would have been easy, but it it would have been one path to just kind of say, Well, that’s over and I’m going to move on and do something different. But

I’m the type of person that likes to learn from things and likes to figure out how to help others and how to learn from the journey. And that made it a lot easier for me to process and to talk about what’s happening. But for anybody that thinks that there’s a magic secret sauce to getting through it, it’s just through it. That’s it. You just have to survive sometimes and then live for an

extremely messy and devastating honestly.

Dr. Heather Sandison, ND (31:01.67)
Yeah, how old are your children now?

Nicole Bell (31:04.206)
So my son will be 16 in a couple of weeks, and my daughter is twelve and a half. So yeah, I mean when my husband went into memory care, they were five and eight. They were really young. And and that was part of the the challenge, is like I I knew I had to be there for them, and I couldn’t because I was a full-time caregiver to somebody with some pretty severe dementia. And

Dr. Heather Sandison, ND (31:09.682)
Wow. I mean they’re still quite young.

Nicole Bell (31:32.268)
And there’s no good form of dementia, but there is, you know, my husband was very combative and and very difficult and he was fully mobile so he could get into a lot of trouble. And so it was it was really challenging.

Dr. Heather Sandison, ND (31:47.508)
Yeah, unbelievably. And then you went on to become the CEO of a company. I mean, d I I think most people kind of that could that could e end things, right? Like you could never recover potentially from going through raising small children and having your husband with severe combative dementia. I I actually have a patient who their the family calls it the best dementia because every time, you know, it there’s so many forms of this, right? And I think for anyone listening, I

Nicole Bell (31:59.684)
Yeah.

Dr. Heather Sandison, ND (32:17.471)
I think there’s this horrifying, scary version, which is what you unfortunately had to experience. Right. And then there are these forms of dementia. Like this patient, he when he eats soup, he’s like, This is the best soup ever. When he this is the best walk we’ve ever been on. This is the most beautiful day. And so he’s always saying, like, this is the best, everything. So they call it the best dementia. And there are these different manifestations. And I think that with, I don’t know if it’s because of the Lyme or the tick-borne illness, or if the part of

The brain that’s affected, because certainly we see that with frontotemporal dementia, but also with Lewy body, like the type of pathophysiology seems to have a role in how this manifests. And you can’t predict it. You also, it’s dynamic, right? You can’t predict it day to day. I’m sure your husband had relatively good days, and then you want to attach on to that, and maybe he can have this time with the kids. And then the next day, it’s like maybe he’s traumatizing the kids. I can only imagine, Nicole, what you have been through.

Nicole Bell (33:14.262)
Yeah, it’s it really, you know, you you go back to the question of like what w what how did my view of of medicine change? And and that was really one where I realized that

The biochemistry of is really what’s driving the bus, right? It’s not anything that you can get. I mean, therapy is very useful and very helpful, but there are things that are outside of that realm that you need to look deeper into why the chemistry is happening. And, you know, for example, with patients with Bartonella, irritability and rage is quite common with Bartonella infections and hallucinations and schizophrenia diagnoses. And so I think a lot of that manifestation that he saw was.

you know, was potentially the pathogens that he had on board, and then over time, through some of his treatment with functional medicine, there really were things that would make him better. So, for example, exogenous ketones were something that I could give him a drink of ketones, and he would be screaming at me about how I.

basically was the worst human in the in the face of the earth and you know I was keeping him captive and I took away his truck keys and stole all his money and all the things. He would drink these exogenous ketones and within 15 minutes he was like, I love you. You’re the best thing that ever happened to me. And like the first time you sit see something like this happen, you’re like, wait a second. Right? Like again, biochemistry driving the bus, right? Like within a short period his entire

behavior changed and it was it was eye opening on so many levels, really.

Dr. Heather Sandison, ND (34:52.383)
We’re big fans of the ketogenic diet and exogenous ketones in the neurodegenerative world. We see big shifts like that, not for everyone, but often and reproducibly. I think probably like what you saw, right? Consistently there was a shift in mood, in behavior, and in function when someone has ketones to burn as fuel in the brain.

you I mean you’re an engineer and you experienced this firsthand. Can you describe like how did you use that tool and did you try to get him into ketosis di like a carb restriction or what how did you navigate that?

Nicole Bell (35:27.798)
Yeah, so absolutely. we and I used to have to hide all of the you know, s the we didn’t have any treats in the house, but even things like I’d have apples on the counter and

Six apples, and I’m like, wow, I can’t I can’t not have apples in the house, right? I have children. but once I figured out with the ketones, it’s like literally his brain was starving for fuel. And so once we figured out that key with ketones, he was on a regular regimen. You know, every few hours we I would give him like a half a scoop of exogenous ketones, and it kept his mood extremely stable. And you know, there were days when I would forget, I would get wrapped up with the kids, and I would miss a dose, and I

Dr. Heather Sandison, ND (35:44.863)
Thank you.

Nicole Bell (36:08.698)
Could see it coming, right? Like he would start pacing, and he you could see the agitation in his face. And then I had to figure out, okay, how can I get this in him as quickly as possible? And it was, it was unbelievable. And it was something that you would never believe until you actually saw it firsthand. But it was the only way that.

he was able to really be cared for. So at up until that point, I I don’t think I would have successfully been able to put him into a resident care community if we hadn’t kind of cracked the code with the ketones because he was so combative and so difficult that they probably would have had to put him in a psych a psychiatric institution. Yes. Yes.

Dr. Heather Sandison, ND (36:51.199)
And it makes me want to take more ketones, right? Because I mean, do you take k exogenous ketones and get into ketosis? Because you s I just whenever I see patients have this traumatic experience or like hearing your story with your husband, it’s like, gosh, if it does that for someone who has that severe disease

I I could probably be optimized by a little bit of that too and have more stable blood sugar, better fuel for my brain, right? All of these things. so do you do you take it? Do you like do you give ketones to your kids now? Like seeing the magic of this?

Nicole Bell (37:21.558)
I don’t give ketones to the kids and I but I do use it periodically and I definitely try and eat low carb and and keep as close to ketosis as possible. do you know, fasting to to kind of stay metabolically fit. but yeah, it like I said, it was really eye opening as to how important some of these pathways and and and fuel sources are.

Dr. Heather Sandison, ND (37:45.502)
I think specifically as a caregiver, do you have any advice for or just insights, experience shares from being a care partner for a spouse? It is one of the hardest things that you can do. How and many people tell me that they wouldn’t have given it up for anything either, right? There’s so much gratitude, especially after the fact.

Is there anything that you maybe wish you had done differently or appreciated more? I is there anything that like on the other end of it you would suggest to other people who are in it right now?

Nicole Bell (38:24.01)
I wish I had asked for help more. You know, I think as I think as someone who, again, I’m an engineer, I’m an entrepreneur, I like to solve problems, and so there’s this tendency to just, you know, throw it in the backpack and carry it, right? Like I can do this and I don’t want to burden anyone.

I think as I went through my journey, and I frankly I watched others with similar journeys, I realized it’s not really, you know, it’s not think of it as a burden, right? If any of my friends came to me and asked for help in a similar situation, I would almost be angry with them if they didn’t ask for help, right? And and so

But I didn’t really leverage that. I have fantastic friends and I have fantastic family, but particularly with dementia, there there comes a lot of shame. You know, my husband was ashamed that he was losing his mind. He was ashamed that he couldn’t do the things that he used to do. And so you see a lot of patients with dementia, they withdraw, right? And then sometimes they bring their their caregivers with them. And that certainly happened in my case, where he didn’t want to talk about it. And so I just

just kind of withdrew with him and that meant I didn’t ask for help. It means I didn’t get help for myself, not just help with him, but help for me. And you know, fortunately I had a really f fantastic functional medicine doctor that we approached as part of the journey and I asked him to take on Russ’s case and he was like, yes, I will take on the case under one condition. I was like

What is that? And he said, Well, you have to become a patient too. And and that was a turning point to realize that like I can’t care for anybody else if I’m not at my best. Like there’s always this tendency to put everybody else first. And there was a moment where my engineering brain

Dr. Heather Sandison, ND (40:13.011)
No, it’s just probably.

Nicole Bell (40:21.012)
Like, look, if I’m running on 30%, if I’m giving 100% to everybody else, that’s not serving anybody. Like, I need to get myself to 90%, and then there’s more of me to give. So it’s not, it’s actually practical, not selfish, to take care of yourself first. And that was the moment I needed as my engineering brain to be like, this is actually logical, right? I need to take care of myself. And that I made, but I made that connection way too late. It was like the point where I was run down.

feel it and unfortunately you know a lot of dementia caregivers are their spouses they’re older right they’re in their sixties or in their seventies and it’s I mean I was in my forties and so it’s it’s really easy to get yourself run down to a condition where you’re impacting your own health.

Dr. Heather Sandison, ND (41:09.511)
Yeah, one of I’ve had almost a similar conversation with some of my the care partners for my patients where I say the condition is you have to take eight hours to yourself each week. It could be four hours on Tuesday and four hours on Thursday, or it can be all day Friday, but you have to have time to yourself where you are not caregiving and you’re not talking about dementia. And and I I think for a lot of people there is hopefully there’s that shift of like, all right, if I’m going to I can’t serve from an empty vessel, right? I cannot, I have to put my own

Oxygen mask on first, whatever the analogy you want to use, but you have to you have you have to have something to give if you want to be a care partner, caregiver. and also having that, I mean, for you you had kids and and work, but you having an identity outside of caregiving, I think, is also really important because it’s not going last forever. There will be an endpoint to it, and then who are you on the other side?

Nicole Bell (42:05.644)
Yep, no. All fantastic points and things that you struggle with, right? And I struggled with and there’s definitely things I would do differently. But again, that was one of the reasons why I wrote the book was to try and learn those lessons, solidify those lessons. It doesn’t mean I still don’t make mistakes and have to remind myself, but that’s the key is is trying to keep that front and center. And I at the end of our journey I kind of wrote out what are my values.

Like what do I care about? And health was number one because it it came to me and I realized that if you don’t have your health, you can’t serve your family, you can’t serve God, you can’t serve your job, you can’t do anything, really. And so then that has to be the number one. Otherwise, like you said, you can’t you can’t serve from an op from an empty vessel.

Dr. Heather Sandison, ND (42:48.894)
Right. Yeah.

Dr. Heather Sandison, ND (42:58.506)
Wow, what what a journey. I want people to understand where they can get your book. So will you share that?

Nicole Bell (43:05.228)
Yeah, so it’s what lurks in the woods and it’s on Amazon and Barnes and Noble and and other places. you know, it’s really it’s a memoir. It it’s not I know some people have gone in and it’s not a how to learn.

With tick-borne illness. It’s just one family’s experience and how devastating it can be. But I wrote it from my journal entries, and so it’s I think a pretty accurate depiction of how chaotic life can be within this sector. And it’s it’s all out there.

Dr. Heather Sandison, ND (43:40.362)
When you think about the next decade of research, of treatments, of testing into Lyme, Bartonella, Babesia, and and neurodegenerative illness, what developments, what things are on the horizon that give you the most hope?

Nicole Bell (43:55.085)
Yeah, I mean, so obviously at Galaxy, we’re working every day to give better tools and to provide that direct detection so patients and providers can understand which pathogens are on board because as we said, there are different treatments and even the most experienced providers struggle with the, you know, a clinical diagnosis because the symptoms overlap so much. And so that is beginning to take hold. I think we’re seeing a lot of uptake in functional medicine, which is great. but in terms of

what I’d like to happen in the next 10 years is is for it to become mainstream, right? So our mission at Galaxy is not to be the best specialty lab that, you know, for functional medicine. We’re certainly working on that and that’s part of who we are. But we want to change the standard of care, right? We want to get it in the hands of everybody.

So we’re taking our novel assays and putting them through the FDA, getting reimbursement so that it can be with your primary care provider. So when you go to the doctor because you suspect you might have tick-borne illness or you have bitten by a tick and you have, you know, some acute symptoms, or you want to know if you got exposed, then we want to have accurate tools so that the doctor can assess whether or not you’ve been exposed or infected. And then at even longer term, I would love

Pathogen-specific panels for different disease states, right? Alzheimer’s is something that has been shown, can be linked to infections. But it’s not just tick-borne infections, right? There’s there’s fungal infections, there’s respiratory pathogens, there’s oral pathogens, there’s elevated viruses, like everything. And so I think over time I would love it so that somebody like my husband shows up at a neurologist and it’s like, hey, he has no genetic.

Dr. Heather Sandison, ND (45:34.122)
Herpes.

Nicole Bell (45:46.067)
Predisposition to Alzheimer’s. He’s declining extremely rapidly at a young age, which doesn’t make any sense. Let’s run this infection-associated panel that’s that’s linked to common.

Dementias and and other things. And similarly for arthritis and carditis and mental health, like we should be screening for pathogens because even if it’s a percentage, say it’s 10% of patients, right? That’s a huge number when you think about chronic illness and you think about conditions like dementias schizophrenia and even

you know, arthritis, right? That’s that can be a debilitating diagnosis that impacts people’s lives and their their ability to thrive. And so that’s where I would like to see this go. And we’re working every day to make the technology more mainstream and accepted.

Dr. Heather Sandison, ND (46:37.502)
Well, we would certainly run that panel. We I mean we kind of put together a panel that is like that, looking at herpes and even toxoplasmosis and and p. gingivalis, some of the things you you mentioned, screening for for borrelia, and covet, you know, a lot of these things that have an impact on cognition.

We we would love to have a panel that puts that together and helps us understand if those particular pathogens are present. And then I you know, it’s so interesting because you put and into PubMed, you put H. pylori and Alzheimer’s and you’ve got stuff that comes up, right? You put your senia and Alzheimer’s and you got things that come up. So it’s like you can almost put any pathogen in there and it’s really I think it’s about immune burden. And there are some that have a a bigger impact on the inflammatory cascade in the brain. But I also think that

It’s about that immune system balance. It’s how good as is it at keeping that toxic or excuse me, that infectious burden down? And part of that equation is the toxic burden. You know, the higher the toxic burden, the lower the immune function. And so all these things work together. And it really does, I think, require that individualized and very thorough workup.

to address what what’s driving all of this for for anyone. So fascinating, so interesting, and very hopeful. Thank you, Nicole, for all of the work that you’re doing. I’m curious, after all that you’ve been through professionally and personally, and you still are on the ride raising children, what brings you the most joy at this stage?

Nicole Bell (48:08.212)
I mean, obviously my kids, that’s the family and you know, my friends in that network is is I think what continues to fuel me as as a person, right? That grounds me and and keeps me going on a regular basis. I think professionally it’s really a lot has shifted in the last few years. Like when I first started researching my husband’s case, the position from the CDC.

And other you know, other government organizations was that chronic Lyme didn’t exist, right? And we’ve moved beyond that. And and I think that there’s an awareness, and there’s even the term AyACI of an infection-associated chronic illness is becoming something that is mainstream. And I think that’s key because it’s that root cause, right? As an engineer.

Dr. Heather Sandison, ND (48:44.49)
Right.

Nicole Bell (49:02.922)
Entering into medicine, I was appalled. I was like, nobody’s asking why. You know, why? It’s it was insane to me. And and and and and that is something that I realized that there are people that are asking why. They’re just in a different sector. And that’s what drew me to functional medicine: is like, okay, here’s an un here’s a you know a group of folks that really are looking at the right answers. And I think hopefully that

Dr. Heather Sandison, ND (49:08.123)
It’s just crazy.

Nicole Bell (49:32.225)
Mentality will spread across more of medicine, right? It’s not like diagnoses like chronic fatigue syndrome are just ridiculous, right? That’s not a diagnosis, that’s not a why. It’s just a naming of symptoms. And I think those are the things that need to change, and at least we’re starting to ask the right questions, right? And so that brings me a lot of hope. I think that there’s still a long way to go until it gets into mainstream and it it pains me sometimes because the access to care is.

just not there, you know, for people that that can’t pay out of pocket. But it’s coming and and that makes me hopeful.

Dr. Heather Sandison, ND (50:10.76)
It is coming. We are really excited because at mm at our clinic at Solsery in California in San Diego here, we are now taking Medicare through nurse practitioners who can build Medicare. Ray, I’m an atropath, I’ll never I won’t be able to build Medicare. but using both the guide program and our nurse practitioners to support those who have dementia Alzheimer’s as well as their caregivers, we can take Medicare, which is super exciting and expands that access to more people. And a lot of the the functional medicine labs are you are taking.

original Medicare, not the advantage plans, but the original Medicare plans. And so that’s I mean there’s

A glimmer of hope. There’s like a path, at least, I hope, right now. It’s all very new to us. But I think, like you, my hope is that more and more people will have access. It’s not just gonna be for people with discretionary income, especially in you know, the over 65 retired communities. So many people are on a fixed income. So I’m excited and hopeful that more people will get access to good quality medicine. That’s asking why.

Nicole Bell (51:10.924)
Yes, a hundred percent agree.

Dr. Heather Sandison, ND (51:13.788)
Thank you so much for sharing you both your expertise and your story today. This is one of those themes that that stands out to me. It’s like the importance of staying really curious when the answers aren’t coming easily. It takes work and dedication, devotion. And your journey is just this powerful reminder that symptoms have causes and that persistence and asking those hard questions, even when the neurologist is rolling their eyes at you. and that that’s sometimes where the most important breakthroughs happen.

And you have been someone willing to question the status quo and not give up.

And then transform this tragedy in your family to answers for others, to hope for others, through through this path at Galaxy. So thank you for being an incredible caregiver, supporting a loved one, being a practitioner, you know, a CEO trying to connect the dots. And I hope that today’s conversation with you really inspires others to keep asking these questions, to remain open to possibilities that might not yet fully be understood, but that you know there’s a lot emerging.

out there. Thank you, thank you, thank you, Nicole, for doing the work that you’re doing to improve diagnostics and advance the research and to share this really, you know, vulnerable story to other so other families who are navigating this don’t feel so alone.

Nicole Bell (52:36.248)
Thank you.

Dr. Heather Sandison, ND (52:38.396)
It’s a lot. It’s heavy and I I think that that’s true in this space, right? It can it can feel heavy.

Nicole Bell (52:45.632)
It can, but as we said, there’s hope, there’s better tools that are on the horizon. I think what brought me to Galaxy was the science, and I I really truly believe that science will solve all of these problems. We just have to continue to be curious and to ask the right questions and to help educate others on the fact that there’s other solutions that are out there, and so that’s that’s what we’re doing.

Dr. Heather Sandison, ND (53:11.284)
Well, thank you for being here to help us with that. And thank you to all of our listeners for joining us on another episode of Think Well, Age Well. Until next time, keep thinking well so you can age well.