The Beginning of the Bell Family’s Lyme Journey

Mimi MacLean :
Nicole, thank you so much for coming on today. I really appreciate your time. And I’m excited for your book to come out in October at the end of October, or actually, it’s only like a week away, What Lurks in The Woods. So thank you so much for coming on.

Nicole Bell :
Right. Thank you for having me. I really appreciate it.

Mimi MacLean :
So I would love to just start out with like, why you decided to kind of take a pause from your very successful career to focus on Lyme and actually write a book.

Nicole Bell :
Yeah, I mean, my husband’s illness was really just such chaos. It started off, he had dementia and memory issues and we had young children and everything in my life was kind of turned upside down and I’m an engineer, I’m a program manager and I like everything to be in their nice little places. And after kind of the worst of our storm was over, I couldn’t just go back to what I was doing. I had to process it. I had to learn from it. I had to figure out the lessons that had been in front of me. And I just didn’t have the capability or the time to really understand because everything I thought I knew was really flipped upside down.

So it really started, I mean, writing started off as a process and a thing for me to basically heal and understand. And then somewhere along the way, I realized that it could help others as well. And then it took on even more meaning.

Mimi MacLean :
And your husband’s Lyme diagnosis was how long ago?

Nicole Bell :
I’d say his initial when we first started realizing that there was something wrong was in 2016. I’d say he presented with a lot of other issues before that, which hindsight kind of revealed. But before 2016, a lot of what I was experienced or noticing in him was mood swings, depression. He was drinking a lot. He had a lot of anger issues and you pass them off as other things.

We had young children, I thought it was the stress of life. And he was unhappy because he had kind of semi-retired and you just think it’s other things. But then in 2016, he started forgetting things. He would forget the code to the house. He would forget the time to pick up the kids. And he was the smartest person I ever met so it was really uncharacteristic.

"We talked about how poor the tests were. And he convinced me to get him retested instead of looking at the immune response with antibodies, looking at a PCR-based essay." - Nicole

That was when I started realizing that something was wrong. And honestly, Lyme was my first thought because he was a hunter. He was always in the woods. He did all the landscaping around our house. I mean, I had pulled many ticks off of him, although he never had a fever or a rash or anything that indicated acute Lyme. We started off with an integrative practitioner. I didn’t even bother to go with traditional medicine. And she had him tested for a whole host of things and his Lyme test, his Western blot was negative and the rest of his blood work looked okay.

She just suggested we go to a neurologist and that was when our journey really began in that area. And, at the beginning of 2017, he received a diagnosis of early-onset Alzheimer’s and his pet scan revealed that he had the late-stage disease, which was, shocking because I knew he was having issues.

But when he was doing some of the diagnostic tests, I mean, he was a computer engineer, an electrical engineer. He couldn’t even do basic pattern matching type exercises. And so I was floored by how bad that it really was without notice. Something is wrong, but you just don’t know the extent of it. And I was convinced that there was a root cause because he had no genetic predisposition. I had him tested with the biggest Alzheimer panel that I could find, and he had no deposition and he was declining really quickly. And so I went to neurologist, after neurologist, after neurologist with no answers. I mean, I even had him tested for things like syphilis and HIV. 

Everything was quote-unquote normal, right, with everything that came back and they just gave us the prescription for Aricept and Namenda, and then send us on our way. And I’d almost given up. But then at the end of 2017, my brother called me and he had been having his own battle. His wife had been sick for years and they finally figured out what was going on. And it turns out she was suffering from Lyme and several co-infections. My brother’s a doctor and he loves to research. And so he was neck-deep in research. And he called and was like, Nic, I’m convinced that this is what’s going on with Russ. And I was like, well, I had him tested. We talked about how poor the tests were. And he convinced me to get him retested instead of looking at the immune response with antibodies, looking at a PCR-based essay, looking for the actual organisms, and sure enough, he tested positive for Borrelia and Bartonella.

Mimi MacLean :
Which test is that?

Nicole Bell :
That was DNA connections.

Mimi MacLean :
Okay.

Nicole Bell :
Yep. So, and that was kind of when our whole journey began.

The Problem with Testing and A Caregiver’s Frustration

Mimi MacLean :
It’s interesting because you bring to light, like, I think Alzheimer’s has just skyrocketed and you can’t really blame genetics. And I think there’s a lot to unpack there. There’s like they say aluminum, the amount of aluminum that’s around our day-to-day life, even in vaccines or whatever is they say affecting our Alzheimer’s but,

Nicole Bell :
Yeah.

Mimi MacLean :
When I got my treatment from my doctor who is a neurologist and he treats a lot of Alzheimer’s and he said he tests every single one of his patients and 100% of them had Lyme and they didn’t even know it.

Nicole Bell :
Yeah. I believe it.

Mimi MacLean :
I think people don’t talk about it enough, ALS, Alzheimer’s, they’re all a root cause. Maybe the beginning of untreated Lyme for a long time. It goes past the blood-brain barrier and sits in your brain because that’s where it can hide out without getting affected by antibiotics or herbs that you might be trying to use to get at the Lyme.  And so tell us a little bit about your book. Is it a memoir? 

Nicole Bell :
Yeah. Before I go there, I just would say with the link between Alzheimer’s and Lyme, that’s one thing that I really wrestled with throughout our journey was trying to understand, as I said, I’m an engineer, so I like to put things in buckets.

Was it Alzheimer’s, was it Lyme, but I really came to believe it’s Alzheimer’s caused by Lyme. And if you look at the Alzheimer’s research, the infection hypothesis, and the fact that there’s an infection like Lyme or other types of bacteria or viruses are behind it is starting to really get a lot more traction. The whole amyloid beta hypothesis is just been a colossal failure with all of the treatments. And so I’m excited to see people starting to make the link. And I hope that our story can help.

Mimi MacLean :
Getting people properly diagnosed is probably essential. Because then you can save months, years off of people kind of just bopping around looking for an answer.

Her Lyme Caregiver Memoir Launching in Late October Hopes To Inspire

Nicole Bell :
I wanted to share our journey and our story and I wanted to record it for me and for the kids just to kind of understand what had happened and what we had been through. And then, as I said, share it with other folks. And, but it’s also a journey of learning. I really believe in the root cause. My previous job was actually in surgical robotics. And so I worked on very complex systems. And so you have a root cause. If there’s a problem, if a robotic arm is shaking, you try and figure out what the root cause is. You don’t just like slap a weight on it and expect the whole problem to go away. And that’s really what people are doing in chronic illness. They just try and treat the symptoms.

And so that whole journey of learning and trying to understand what was going on and then dealing with all the craziness online and in the research about whether chronic Lyme exists or doesn’t exist. That was as an engineer trying to parse through that, I just tried to catalog that journey and how difficult it is as a caregiver.

And then also as much as I could from Russ’s perspective and being ill and it’s really raw. I mean, I didn’t hold anything back. I wrote it for myself and didn’t really change anything when it became time to share it with others. And hopefully, that will help people connect with the story and hopefully share it so that they can learn from it.

Mimi MacLean :
No, I know you said that your husband is obviously not doing well, which I’m really sorry about, and it’s got to be very hard for your family.

Lessons Learned and Not Rationalizing Away Symptoms

Mimi Maclean:

Are there lessons like that you can look back on that maybe you could share to people who are at the beginning of your journey that you kind of wish you knew from the beginning that maybe would’ve changed the outcome?

Nicole Bell :
 I think it’s really just not rationalizing away symptoms. I think as a society we’ve gotten to be okay with saying it’s, yeah, depression, and anxiety, and mood swings and maybe some aches and pains and other things are just part of life or part of getting older.

Hindsight is 2020 and I saw even little things like, so as I said, we started our journey in 2016. I mean he had a panic attack back in 2009, I believe. Stuff like a panic attack out of nowhere. And we went to the cardiologist and they said, everything is fine. And, but it wasn’t fine. And it’s like, well, was that an early symptom? Was that something that we could have really dug into and found a better answer?

The other key lesson is just how horrible the diagnostics are in traditional medicine and really relying upon the standard two-tier testing to diagnose Lyme is just ridiculous. And a lot of people get missed. And even though we were relatively late at that point, it would have been 15 months sooner, which when your brain is essentially on fire that 15 months could be,

Mimi MacLean :
The different.

Nicole Bell :
The difference between life and death. I mean, honestly, so I’ve taken away from it. I really try and be in tune with my body and what’s going on and trying to understand what things make me feel better and feel worse and really listening to my body a lot more and not trying to rationalize away symptoms, but I just don’t think that’s standard. I don’t think most people will, we have so many things going on that it’s really difficult to take a hard look at things and try and figure out what’s going on.

The Connection Between Lyme, the Brain and Mental Health

Mimi MacLean :
Well, you bring up a good point because I feel like, the medical community, you kind of think of Lyme as like last resort. And it almost should be the first thing. I was talking earlier with another guest who wrote a book and she was saying how it almost should be part of like, even when you’re pregnant, a part of the process that you get screened for because it could be the difference of your child being born with lifelong illnesses or autism where you could treat when they’re in utero that could prevent it from having these illnesses.

So the other point is too, is like for a lot of teens that are having mental illness right now, like you mentioned depression. And so a lot of that could be from Lyme bacteria, some other parasites, something else besides just a mental, like get to the root cause of what’s happening and testing that. And Dr. Bach, who I’ve had on my podcast before too, that’s what his whole book is about. He primarily just treats teenagers and teenagers that have some kind of a mental illness or they’re showing up that way. And he doesn’t believe they actually have it.

He thinks it’s from, like I mentioned some kind of a bacteria or a virus that’s attributing to their anxiety, or depression, or suicidal thoughts. And so you do bring up a good thought. It’s like, let’s almost put it on the forefront. That should be one of the first five things you think of when we’re dealing with that or any of these homes that you go to that people are being sent to for mental health. You should be screening everybody there.

Nicole Bell :
Yeah. I mean, I have to say that one of my major takeaways from the whole experience is how linked our biochemistry and infection is with mental illness. Because I mean, my husband was an engineer. He was the most logical and just very straightforward and calm person. And he literally went insane as part of the process. I mean, he was hallucinating.

I mean, part of the, obviously the, what lurks in the woods is a reference to ticks and Lyme, but also because he thought people were living in my backyard and the woods trying to kill us. He thought that there were snipers and all sorts of things. One time during a hurricane, he thought that there was a man swinging from the trees with a machine gun. I mean, stuff you can’t even make up. Right. And so watching that transition really just gave me so much empathy for mental illness and how what’s going on in your brain and the biochemistry and infection can have an impact.

So I absolutely agree. And as I’m kind of getting entrenched in the community, I hear more and more stories of people with schizophrenia or other types of disease that are diagnosed with either Lyme or Bartonella. And it’s way more prevalent than people believe, but nobody’s screening for it. 

Mimi MacLean :
Yeah. I mean, even like you look at the suicide rates, just obviously because of COVID, but it would be an interesting thing if you actually were screening for these people who’ve committed suicide. Like if they do have something like if it’s Lyme or the other big thing is mold, mold is a huge factor that drives mental health illnesses. It’s like that schizophrenia. That’s where my one doctor said, it’s major. And did your husband, did you ever look into the mold piece of it?

Nicole Bell :
Yeah. We’ve tested the house and that was not, I don’t believe that that was a major factor in his case. I do think one thing that I haven’t really mentioned that was a contributor, his case was heavy metals. He had really elevated levels of both lead and mercury and both of those are associated with Alzheimer’s and cognitive decline. So I think that was another confounding factor in his case. 

Treatment in Late Stage Lyme with Incorrect Diagnosis From the Start

Mimi MacLean :
Yeah. And do you think by the time they found it, it was too late to do kind of the collation and the typical…

Nicole Bell :
Well, we did collation, we did collation, both natural and chemical collation and in some cases, I honestly think that it made it worse. I mean, after some of his collation treatments was when the hallucinations really started and he would get really agitated. And so I think it was just, it’s hard to tell. There was so much going on and his disease was so entrenched that it was really difficult to say it was this one thing or this other thing, but I definitely think that the compilation of factors was really critical. And the fact that we just got started late.

Mimi MacLean :
Yeah. I mean, my doctor always kind of attributed the disease, he was like, it’s kind of like termites. He’s like, you could either have active termites and you’re trying to go after them, but even after they’re gone and you’ve killed them, then you got to start working and looking at what damage they’ve caused in your home, in your house and kind of see what they’ve burred into and what permanent damage that can’t be erased.

What is your goal going forward once you release it on October 23rd? Do you see yourself continuing in this Lyme world doing something or is your book kind of it?

Nicole Bell :
No, I think I definitely have now a calling to figure out how to help. So the book in my mind is really that first step and sharing our story and helping others. But I’ve worked in the medical industry. I’ve been in medical diagnostics and medical devices for the last 15 years. And it feels like I need to use those skills to try and help. It’s hard for me to go back. I’ve been asked to go back to my previous job. I’ve been asked to do lots of fun startups and other things that have come my way and I just can’t get excited about it anymore.

There’s just, I’ve been exposed to all the challenges and the problems in chronic illness, Lyme disease, Alzheimer’s and I feel like there are just so many needs there, whether it’s in tracking, monitoring, diagnostics, there are lots of things I’d like to help in. And where that shakes out, I don’t really know, but I know that I can’t just go back to what I was doing before. I mean, not that I didn’t love it, but it’s just kind of a calling that I’ve been recruited for. Unfortunately, you don’t, I’ve noticed with most people with Lyme, you don’t choose it chooses you. And I feel that now.

The Hardship of Being a Lyme Caregiver

Mimi MacLean :
Well, Nicole, I wish you the best of luck with your book and I pray for your family and your husband. Is there anything else that we haven’t covered that you wish to cover?

Nicole Bell :
I think that I already touched on the mental illness piece. I think that’s a huge one. I think the other thing that I would say is the stress of caregiving in this environment is just, is really tough. I think, there needs to be more tools and techniques for people to be able to manage that process.

I mean, I was not only managing Russ’s illness, but I was also working and I was managing two young children. I mean, at the time when his disease was the worst, they were four and seven, five and eight. And it was just overwhelming. I mean, I consider myself a pretty competent person, but I was losing my mind.

Mimi MacLean :
It’s so hard.

Nicole Bell :
 I think, there’s the challenge of going through it and there’s a challenge of caregiving and there’s just, it’s so devastating how this disease can be so misunderstood. And really the traditional medicine is really not making any strides to help and to get it into the right buckets and to the right diagnostics in the right capability.

So I think it’s just spreading the word. A lot of people don’t read Lyme books unless they’ve been impacted by Lyme. Right. But I’m hoping that my book because it’s more of a personal story that can actually be for people that are maybe outside the fringe of Lyme disease or other chronic illness. And it can help people understand and be empathetic to the plight of what they’re going through because so many people just don’t understand what it’s like and they say they want to help, and they say they understand, but they really don’t.

 I’m hoping that my story and our story can really help bridge that gap a little bit. 

Mimi MacLean :
It’s true. Well, thank you so much. And I really appreciate your time. And I hope your book gets into the hands of many, so they can build awareness about Lyme and hopefully bring on change, and more diagnostics and more treatments to help more people.

Nicole Bell :
Oh, thank you. I really appreciate you taking the time to chat today.

Mimi MacLean :
Each week, I will bring you different voices from the wellness community so that they can share how they help their clients heal. You will come away with tips and strategies to help you get your life back. Thank you so much for coming on. And I’m so happy you are here. Subscribe now and tune in next week. If you want to learn how I detox and you want to check out my detox for Lyme checklist, go to Lyme360.com/detoxchecklist. You can also join our community Lyme360warriors on Facebook, and let’s heal up together. Thank you.