Episode 7 – In The Limelight

Nicole: So I was still just figuring out something was wrong and the doctors were saying that we were in the late stages of disease. I was slowly crumbling. You get to the point where you feel like you can’t do anything well, and when you’re an overachiever your entire life and all of a sudden you feel like you’re failing at everything, it is a horrible space to be.

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Host: That’s Nicole Bell, MIT Class of ‘98 ‘SM ‘99, Course 3, Baker House and Ashdown. She found herself in a race against time to save her husband, her family, essentially everything dear to her. I’m not going to withhold the punchline until the end. This episode is about undiagnosed Lyme disease. If you or a loved one are experiencing unresolved fatigue, cognitive decline, or mood swings, you’ll want to hear this story.

I’m Ravi Patil. And this is Institrve, true stories about MIT, a trove of wonder discovery and madness. This podcast explores the diversity of the human experience. The question of what it means to be human is a timeless one. By hearing the stories of others, we just may find a piece of ourselves and be inspired to transcend our own limitations.

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Can you describe what your husband Russ was like in his prime?

Nicole: Oh, he was an extremely intelligent and charming individual. he had a presence about him that was really captivating and could come up with these really quippy, witty comments that would catch you off guard and make you laugh.

And the other thing that I really loved is that he could rate adapt enormously well. He could talk to an engineer who was really in the weeds. He could talk to a CEO about business strategy or he could just talk to some random person we met at the gas station.

He was also an electrical engineer and computer [scientist] but he played the guitar, and I think that combination of the left brain, right brain made him extremely creative. He had 28 patents.

Host: Okay, so how did you cross paths?

Nicole: We met working together and in business he could be extremely creative and come up with very unique solutions to challenges. He was 20 years older than I am, and so I had never really expected that we would have a romantic relationship, but I just found him so intriguing and different that, that relationship just happened.

Host: And he also enjoyed outdoor activities.

Nicole: He did. So he was extremely physically active. He liked hiking, mountain biking. When we met, he was living in New Hampshire. I was still living in Boston. On the weekends, if he was bored, he would just go up and go skiing.

He was a hunter. [sfx: loading and firing shotgun] He did a lot of sporting clay shooting, which I describe as golf with a shotgun.

Host: Keep in mind this answer as you hear the rest of the story.

Let’s set the stage for when Russ’s symptoms first started appearing. Can you describe what was going on in your life, career, and family?

Nicole: Yeah, so really it was the start of a family, and I think at the time I didn’t necessarily think of them as symptoms, but in, hindsight is 2020, right?

So in retrospect now, I understand that they were symptoms, but I think the first signs were really mood swings. So he would have bouts of not himself. He was depressed. He would have some anger issues and these were things that he had suffered with growing up.

And so I passed it off as well maybe we’ve been married for a long time and the veil is coming off and he’s stressed because we had really young children at the time and so maybe I misjudged his actual character cuz he had gone through a lot of therapy and he had worked through it and we never had that in our relationship.

But then it started reappearing. Of course, you tell yourself these stories about why they’re happening.

Host: And then something strange happened, something that only made sense in hindsight.

Nicole: In the 2006, 2005 timeframe, he had a panic attack at work and it was just very uncharacteristic and didn’t make sense. We had him checked out by the cardiologist and his heart was racing and he was not feeling well. And, they were like, “No, it’s just a panic attack. Tell us if it happens again,” and it didn’t. It was about the same time some of these other symptoms started but really it was more mood based and it progressively got worse. He started having depression.

Host: A decade of mood swings took a toll on Nicole’s marriage.

Nicole: He would just be nasty, which he never really was to me before. To the point where I thought we were gonna get divorced, around 2015 timeframe. We never used to fight and we were fighting constantly. We were both engineers, right? So our arguments used to be constructive. And then all of a sudden I realized that, one, they weren’t constructive, but two, that his side of the argument really wasn’t making sense anymore.

I started putting the pieces together and I’m like, “Something’s really not right here.”

Host: And the mood issues also turned into cognitive issues. There were some weird situations going on in the house.

Nicole: Yes. So around 2016 was when I started realizing that it was more than just mood or depression. He started forgetting things. It was the schedule for the kids, what time to pick them up, what time to put them to bed, if I was working and not home, or just things that I was like, wait a second, this is the same every day. Why is this going on?

And I think one of the really memorable moments was I was at work and I got a phone from the house alarm. [sfx: alarm] And cuz the alarm was going off and Russ was home with the kids and it was blaring and he couldn’t shut off the alarm. And, of course, in his argumentative mindset, it was like, “This alarm is screwed up and everything is just, it’s not right and we need to get the keypad replaced.”

I would go home and everything seemed to be fine. I’m like, “It works for me. What’s going on?” He had forgotten the alarm code. He had forgotten patterns of things that were happening in the house.

Host: And so you eventually decided to do a full court press on medical testing.

Nicole: Yeah, and that was a challenge. When you tell somebody, “Hey, I think that there’s something going on with your brain.” That’s not an easy discussion to have, particularly somebody who is naturally in this argumentative state.

And the first time we went to the doctor, we went to an integrated physician because I believe in looking at the body as a system. And they ran a bunch of labs and everything was normal and so she said, “Go to a neurologist if you think that he’s having cognitive problems.”

And so we did. And I went to an all-day diagnostician, somebody who you spend the whole day and then you come out with a diagnosis. And at this point, Russ was frustrated with me and I knew I only had limited arrows in my quiver to get him to a diagnosis. And so I was like, “Okay, let’s do this all day thing.”

The day before Thanksgiving and they ran a series of cognitive tests. And I was shocked at how poorly he did. It starts off with very easy things like, “What state do you live in? What year is it?” Things that he would do relatively well. And then it progressed to patterns or memory. And some of the tests he would do reasonably well and in others, he was colossally failing.

At the time, my son was very young. I think he was in first or second grade and he would’ve been able to do it right. And now, my computer scientist was unable to do basic pattern matching exercises. Literally, my jaw was on the floor watching him.

Host: These observations spawned another round of testing and an utterly shocking result.

Nicole: They said it could be one or two things. It could be a stroke or it could be Alzheimer’s disease. And I was like, that word, Alzheimer’s disease. You’re like, “No, that’s not possible” and so they sent us through a series of scans. His MRI came back normal. And then after that, they recommended a PET scan, which looks at the activity of your brain and your metabolism of glucose.

And that was when we got the diagnosis of Alzheimer’s disease. And not only that it was Alzheimer’s disease, but it was late-stage Alzheimer’s disease. So I was still just figuring out something was wrong and the doctors were saying that we were in the late stages of disease.

Host: And how old was he at the time?

Nicole: He was 60.

Host: Okay. So everything is showing normal every which way but you get a diagnosis, late stage Alzheimer’s.

Nicole: Yes, and of course, Alzheimer’s early stage, you think some sort of genetic condition. Which is obviously scary cuz we had two children together at this point.

And so I got him tested for every known genetic condition that was out there. Nothing came back positive. He had no comorbidities, like diabetes is implicated, hypertension, all sorts of other things. He had nothing that would really link it to this level of cognitive decline.

And, so I was shocked. Again, I like to solve problems, There’s always an answer. There’s always something that’s causing it. And we were just getting answer after answer that was just saying, “Nope, he’s got Alzheimer’s. Here’s your prescription for Namenda or Aricept or some drug that might help him.”

Host: The methodical search for root cause is a classic engineering skill. You were raised in Massachusetts. Was MIT always on your radar?

Nicole: It was. I thought I wanted to be a math major but I was also an athlete and so I wanted to go to a big school with big sports, Notre Dame. But my parents very much wanted me to go to MIT and my dad worked for Draper Laboratory, which is right behind the Institute.

My parents, they’re like, “If you can get in, you would literally be an idiot if you decided not to go.” But of course, I was 18, so I was an idiot. My executive functioning had not fully developed and I still wanted to go to a big sports school. So my parents made me a deal that they said, “Go for a year. If you don’t like it, you can transfer anywhere that you want.”

It’s genius actually, because it’s back in my hands. I said, “Ok.” And then, of course, I went and I loved it. I made friends and I never thought about transferring.

Host: What an interesting anecdote.

Was there a straw that broke the camel’s back moment when you decided to shift gears on root cause analysis?

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Nicole: It was like after you’d seen four different neurologists and all the labs are quote unquote normal. There’s just only so much that you can do. Finally, I think I just gave up and accepted the diagnosis and even Russ was like, “If this is gonna happen, we need to plan.”

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My brother Scott called and it turned out that his wife at the time had her own health issues, which I won’t go into detail. But after a long journey, they had figured out that she had multiple tickborne illnesses and my brother’s a doctor and when he gets onto something, he’ll go to the end of the earth to figure it out.

Host: It’s funny how certain traits run in the family.

Nicole: She had Lyme disease, Babesia and Bartonella, which are common co-infections. He had researched both Lyme and Bartonella have huge cognitive involvement and he was like, “I think this is what’s going on with Russ.”

And that first doctor that we went to back in 2016. I had him tested for Lyme disease because as I had said earlier, Russ was always in the woods. I had pulled many ticks off of him, both in New England and in North Carolina. He had been living in New Jersey, in Georgia and California, all sorts of different areas. And he tested negative and Scott proceeded to talk to me about how insufficient the testing is. It’s really inadequate.

And as I’ve done more research, 40 to 50% of people can actually test negative because it’s looking for antibodies, it’s looking for immune systems response to the actual bacteria.

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Host: Hold on, Folks, you heard that right! Up to 50% of people can test negative for Lyme disease when they actually have it. We’ll find out in a just a bit how to overcome a misleading test result. But first, let’s first understand why standard testing has such low accuracy.

Nicole: Borrelia, which is the bacteria causing Lyme disease, has been evolving for millions of years, and it’s very stealthy and it evades your immune system. And when you’ve been infected for a long time, your immune system is suppressed. And so you’re not developing a robust antibody response. That’s why you’re chronically ill because you’re not developing a strong immune response.

And so, they’re looking for antibody responses. You need to have five bands that are positive for IgG, which are the more established antibodies after you’ve had an infection for a while and Russ only had one of the five bands. But then, my brother convinced me to go back and do a different testing methodology where instead of testing for antibodies, you’re testing for the bacteria itself. And instead of doing a blood borne test, we actually did a urine-based test because Borrelia tends to congregate in the bladder and you can look for the bacteria itself instead of the immune system’s response.

And sure enough, when we did that, he tested positive and we also figured out later that he had two coinfections, which was Bartonella and Babesia. And he also had high levels of lead and mercury in his blood. So all of those things were leading to his dysfunction and some of his cognitive decline.

Host: Why isn’t it standard practice to look for the bacteria rather than the antibodies?

Nicole: Because they are difficult to find.

A lot of infections, they get into your body, they replicate really quickly, and then they’re able to be detected by PCR or some sort of other kind of methodology. But there’s also a subset of infections that are in lower abundance, and they don’t free circulate in your blood. They either hide within cells or within your tissue, and they’re not free circulating, so they’re more difficult to find. And so if you look at Borrelia, it’s actually contained in blood orders of magnitude lower than what the conventional detection limits are PCR, so it’s difficult to find,

And so you need to have advanced techniques where you’re looking at concentrating samples or looking at antigens that are put off by the bacteria rather than the bacteria itself or some sort of methodology that increases the sensitivity of the PCR that you’re gonna do, so that you can actually determine whether it’s there or not.

Okay, antibodies are easy but they’re limited because it’s dependent upon the host response and the quality and the status of your immune system. And then the other thing about antibodies is it doesn’t tell you if you have an active infection. So you can have an infection, it can be cleared, and you’re still antibody positive.

That’s why we get vaccinated. You get a challenge, then you develop antibodies, and then it protects you against getting that infection again. Just because you have antibodies doesn’t necessarily mean you have an active infection.

So the whole methodology is flawed and that’s why if you look at the Infectious Disease Society of America, they say for infectious diseases, they recommend direct detection, not serology or antibody-based detection. But because with these stealthy infections, it’s very difficult to get positive direct detection methodology, serology is the next best thing.

Host: For the audience that’s listening, suppose they suspect Lyme disease, but they get a negative test result. What would you recommend they do?

Nicole: The mainstream medical community will just order a Western blot, which is an antibody scan from a Labcorp request, and the accuracy of those is really poor.

I would recommend that they go to a person who’s skilled in Lyme to actually get a clinical diagnosis or to get an improved test. So a lot of people ask me a lot, “Where should I get tested?” And I really like a company that’s actually local in North Carolina called Galaxy Diagnostic.

They do sample methodologies for both Bartonella and Borrelia. They look in urine for Borrelia, which as I said, that organism congregates in the bladder. And so not only do they focus on the right sample matrix, but they concentrate it. So if it’s there, they’re going to get a more likely to detect it.

And then for Bartonella, which is another very stealthy infection, they will actually do multiple blood draws, and then they culture it so that again, you’re not just gonna get it by just doing a standard PCR test. You need to do some sort of methodology that’s gonna increase the sensitivity. And I think their technology is best in class. Those are the types of tests that I would recommend.

And then the other thing I would say to them is, it’s more than just Lyme disease. Ticks carry multiple types of bacteria, parasites, viruses so you should really get screened for a panel of tickborne illnesses to see what else you have because you may be feeling sick, but it could be Ehrlichia, it could be Anaplasma. It could be one of the other infections, which are on the rise in certain areas.

Host: After doing the deep dive with all of this testing, what was Russ’s final diagnosis?

Nicole: It was at least three tick born infections that I know of. So it was Borrelia, Bartonella and then [?] and Bartonella is a little bit argued as to whether it’s tickborne or not, but it is a pathogen that is known to be transmitted by biting insects.

He also had high levels of heavy metal toxicity, both lead and mercury. Mercury probably from eating a lot of fish, which we both loved and then lead because he was a shotgunner, so he was exposed to a lot of lead, both through shooting and through reloading, and neither one of those is good for your brain. There’s a lot of research that shows that there it leads to toxins.

Both Borrelia and Bartonella also lead to the formation of toxins within your brain, and that triggers your immune system to go haywire which is when you start getting neurodegeneration.

Host: And so Alzheimer’s was a consequence of all these issues?

Nicole: Yeah. Well, I really think of Alzheimer’s as more of a symptom than it is a diagnosis. Your brain is fundamentally deconstructing neurons. Why? There could be lots of different reasons. And if you look at the literature out there, it could be metabolic. They sometimes call Alzheimer’s diabetes type three. It could be because you have hormonal deficiencies or toxins in your brain. And a lot of it can be caused by infection.

They’ve linked oral, viruses. They’ve linked other types of airborne pathogens to neurodegeneration. And so something is in there that’s causing your immune system to get off balance, which is causing the systematic destruction of your brain and then these Alzheimer’s and dementia-like symptoms. And so again, it’s a symptom.

Host: While Russ was struggling with his condition, he found solace in a stereotypical male pastime: power tools!

Nicole: [sfx: lawnmower revving] He loved to do stuff outside and so the blower, the power washer, the weed whacker kept him engaged. It kept him feeling like he was doing something positive that he could take a look at the end of the day and say, “I did that!” And it was almost comical because I was working from home for a while and there was always some sort of massive noise coming from my yard. My poor neighbors.

And there were things that were not so great. He decided to mow the lawn in the middle of a hurricane. Then he was hallucinating and doing things with weed whackers that were just not right, but it was a journey. And I think that’s one of the things that people don’t realize about dementia is that it’s not just forgetting things, it’s completely altering your reality.

And, as a caregiver, that’s difficult to comprehend because you’re still thinking logically of that person as the person that you knew. But really they’ve become somebody who thinks and acts differently. When somebody’s declining, it’s difficult to let go of what you’ve seen of them.

But those security blankets can be just a coping mechanism. Later it became the guitar, as I mentioned, he liked to play and that was a much more productive and peaceful coping mechanism.

Host:  Let’s transition to your journey. Your experience really conveys the plight of the caregiver having to juggle so many balls while literally making life and death decisions. Can you describe that process?

Nicole: At first, it was Russ just gradually stopped doing things and isolating himself. And so I would piece by piece, take on more responsibilities at the house, and I was working full time and more responsibilities with the kids and all of a sudden I was just really stressed out all the time, because I was doing, it felt like most of the work.

And then you get a little bit bitter because you don’t realize what’s going on with your husband yet. And it was like, “You’re home all day? Why are you not doing this? And why can’t you help with that?”

And so there was that part of the journey. And then after I realized he was sick, then it’s “Okay, I still have to do all that and now I have to really take over everything at the house.” Whereas he was still doing some activities and then it got to the point where I didn’t trust him to drive the kids anymore.

So I had to make that takeover of all of the family functions official, but then I also had to manage his care, right? Okay, how do I figure out what’s going on with him? How do I navigate tickborne illness?

If you start researching Lyme disease, it will drive you insane with a lot of the misinformation that is out there. People are still figuring it out. Science is set up so that people can have different opinions and that may foster on for a long time and eventually the right answer emerges.

But unfortunately for Lyme disease and a lot of tickborne illness, were not there. You go into the research and you read vastly different opinions on things and you have to figure out how to navigate that.

Host: You were in charge of literally everything.

Nicole: I’ve always really done well in my career and in school and so forth. And so, I like to do things to a certain level. And when you’re doing all the things, you’re the mom of two young children. I was a vice president in a newly public company in medical devices. I was managing the household. I was managing his illness.

I was slowly crumbling. You get to the point where you feel like you can’t do anything well, and when you’re an overachiever your entire life and all of a sudden you feel like you’re failing at everything, it is a horrible space to be.

Host: Although Nicole felt like she was failing, she was keeping everyone afloat, giving all she had and then some. Here’s an anecdote of a creative solution she devised to a nagging problem.

Nicole: My husband was hallucinating and he thought that there were people living in my backyard. The book that I wrote, What Lurks in the Woods, it refers to ticks, and obviously that they’re living in the woods. But also, there’s the thread of the story where he thought that there were literally snipers in my backyard that were trying to kill us.

And so one day he was, Driving me crazy, and I was arguing with him and then I was like, “What if I put in a security system in my backyard that would give him comfort?” He loved the idea. I was gonna put some cameras out there and wire it to my phone. Then I’m like, “Wait a second. I really don’t need to do this for real.” We have a lot of deer in our backyard and I don’t wanna be alerted at three o’clock in the morning that a deer walked through my backyard.

So I ended up just buying motion activated lights. And I made a faux app on my phone with pictures and so forth. And anytime he would get nervous, I would say, “Hey, look, oh, look at the cameras. Everything is normal.”

And it really gave him some confidence that we were safe. I felt a little guilty deceiving him but at the same time, you just gotta do whatever you can to get by because it’s hard and you’re not dealing sometimes with somebody who’s rational anymore.

Both Lyme and Borrelia and Bartonella also very commonly associated with massive levels of anxiety and so you have to figure out how to deal with that.

Host: This is a story of your perseverance and learning as you go and finding forgiveness for yourself. I’m sure you went through a lot of second guessing and all that.

Nicole: Oh, yes. There’s a lot of anxiety and guilt that comes with caregiving that I think you have to learn how to handle one way or the other. It either becomes a positive thing that you learn from or you use it to rip yourself apart.

And I just started eating myself up about all the things that I wasn’t doing and I was always very independent. Like I could figure things out. I was used to managing a team and being in control. But in my personal life, I didn’t have that. It was just me.

I was so critical of myself for failing at all these things. I realize I didn’t actually fail at any of those things. What I failed on was not asking for help and not being more open and more vulnerable as part of the process.

Reaching out and getting that support network in place is absolutely essential, and I just really was terrible at it. I had to get to the point where I broke in order to let people in and I think that was my biggest failure through the whole process.  

Host: What changes would you like to see in how healthcare is delivered?

Nicole: Oh my goodness. So many answers to those questions. I think fundamentally embracing root cause in medicine is a huge one, and there’s so many challenges with that actually being implemented.

The reality is medicine has developed as acute care. Our body crashes and we want an immediate answer. So we break a bone, we wanna cast, we have an ear infection, we want an antibiotic. Acute care of infection has been fabulous.

Now, as we’ve taken care of a lot of that low hanging fruit with the obvious answers, we’re left behind with a lot of really complicated illness. The majority of America is afflicted with some sort of chronic disease. 60% of adults have at least one chronic condition.

Going back to our discussion about Alzheimer’s, why is your brain systematically destroying itself? And medicine is just really not good at that. You have a 15 minute appointment and no doctor can figure out a complex condition in that amount of time.

So medicine needs to change in terms of giving doctors more time to do detailed histories, to do extensive testing. Insurance companies need to pay for that testing so that they can get to the root answer.

And then also us as a consumer, you go in, you want your 15 minute appointment, you want your pill, that’s gonna fix it. And that’s just not the case. The answer to my problem might be more complicated. It may mean lifestyle changes. So it’s really, it’s not just the medical community. It’s a societal issue in terms of how we accept healthcare, how we pay for healthcare, and then how we treat those interactions. And it’s really quite broken at this point.

Host: What recommendations do you have for the audience?

Nicole: I think that it’s really the one thing that I’ve taken away in my health journey and for my family now is really be in tune with your body. Don’t ignore symptoms and if you are feeling like you have some aches and pains, or you’re fatigued, your body’s telling you that something’s wrong, and so yeah, you’re overstressed. Maybe you need to slow down a little bit, or you’re having some sort of aches and pains. Maybe you need to figure out what’s causing that.

I’m a real big fan of functional medicine or integrative medicine, which really focuses on that root cause. A lot of these signs and symptoms that we just rationalize away are things that we could uncover and address if we really dug in and worked with a doctor who would really take the time to figure out what’s going on. And it’s challenging cuz a lot of that’s not covered by insurance. So it’s self pay and but to me it’s worth it. I would much rather pay that in prevention and wellness to expand not my lifespan, but my health span.

Host: One last question. What is your mission?

Nicole: My mission is to raise awareness about tickborne illness and root cause of neurocognitive decline and dementia. I’d love for you to read our story and learn from it. I wrote a book called What Lurks in the Woods. So many people have connected with our story and they’re learning about their own health journey and how to get better, and so, I think awareness is the first piece. That’s what I would like people to understand.

And then my own personal mission is really to help fix diagnosis. I’ve been in medical devices for 15 plus years and I’ve worked in diagnostics and that’s really the key linchpin. How do we do direct detection more effectively? If I have a test that tells me I don’t have something, then you’re never going to be properly treated or diagnosed.

And then eventually the third piece is, now what do I do for accurate treatment? Because that’s also not quite there. So that’s, I think, where tickborne illness needs to go and raising awareness and asking the right questions is really a key part of combating the issue.

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Host: What you’ve heard are just a few snippets of Nicole’s intense journey navigating chronic illness. I invite you to visit her website nicoledaniellebell.com to dive deeper. There, you’ll find info about her memoir entitled What Lurks in the Woods: Struggle and Hope in the Midst of Chronic Illness.”

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It’s a poignant, courageous, no-holds-barred account of her journey. You can contact Nicole through her website and find links to more info about Alzheimer’s, Lyme disease, and other topics. As always, links can be found in the Institrve show notes.

As I absorbed Nicole’s story, I was moved by her poise and steadfast determination amidst uncertainty. Her lesson learned of asking for help is a powerful one that we can all incorporate.

As Russ’s condition further deteriorated, Nicole did reach out for help and placed Russ in an assisted living facility. Russell Bell passed away on January 14, 2022.

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Nicole Bell continues today in her tireless pursuit of raising awareness for tickborne illnesses and improving diagnosis.

Feel free to reach out to her or me if you have any questions.

Choose happiness. See you next time.

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