Imagine watching someone you love slowly become a different person.
Their personality begins to change. Conversations become more difficult. Their memory starts slipping, and everyday moments that once felt completely ordinary become increasingly challenging.
You know something is wrong. You can see it happening. And eventually, a doctor gives you a diagnosis.
But what happens when that diagnosis doesn’t answer the question you’ve been asking all along?
Why is this happening?
For Nicole Bell, that question became the center of a devastating personal journey. Her husband was diagnosed with early-onset Alzheimer’s disease after experiencing significant changes in his personality, memory, and cognitive function.
But Nicole continued searching for answers. Despite an initial negative Lyme disease test, further investigation eventually revealed that her husband had Lyme disease and two other vector-borne infections: Bartonella and Babesia.
Sadly, despite receiving treatment, he passed away in 2022.
Today, Nicole is the CEO of Galaxy Diagnostics and the author of What Lurks in the Woods. She has dedicated her work to improving diagnostic testing and helping other families navigate the uncertainty that can accompany complex illnesses.
On this episode of Never Been Sicker, Nicole joins Michael Rubino to share her family’s experience and explore the challenges of diagnosing vector-borne infections, the importance of considering environmental exposures, and what happens when patients are left searching for answers.
It’s a conversation about science, uncertainty, grief, and the determination to make something meaningful out of an unimaginable loss.
Who You’re Listening To: Nicole Bell
Nicole Bell is the CEO of Galaxy Diagnostics, a company focused on diagnostic testing for vector-borne infections, including Bartonella. She is also the author of What Lurks in the Woods, a book inspired by her family’s experience navigating complex illness and the search for answers.
Nicole’s involvement in the field is deeply personal. After her husband’s health began deteriorating, she found herself navigating a complicated medical landscape involving neurological symptoms, infectious disease testing, and conflicting information.
Her experience eventually led her into the diagnostics industry, where she now advocates for improved testing methods, additional research, and greater awareness of vector-borne infections. Her perspective combines the experience of someone who has navigated the healthcare system as a family member with her current work in diagnostic testing.
When a Diagnosis Doesn’t Answer Every Question
One of the most striking moments in Nicole’s conversation with Michael comes when she describes an interaction with a neurologist.
Her husband’s Alzheimer’s diagnosis had already been established, but Nicole was still struggling to understand what had happened. She wasn’t necessarily asking the doctor to give the condition another name. She wanted to understand why her husband was experiencing such a devastating decline.
As she recalls telling the neurologist:
“I know the diagnosis, what I don’t understand is the why.”
According to Nicole, the doctor’s response was:
“Mrs. Bell, I know this isn’t what you want to hear, but sometimes shit happens.”
It’s a moment that helps explain why she continued searching.
A diagnosis can provide important information. It can help guide treatment, establish expectations, and give patients and families a framework for understanding what they’re experiencing. But it doesn’t always answer every question about how a condition developed or whether other health issues may be present.
For Nicole, those unanswered questions became impossible to ignore. And eventually, her search led her toward vector-borne infections.
The Negative Lyme Disease Test That Didn’t End the Search
During her husband’s illness, Nicole explored the possibility that an infection could be contributing to his symptoms. But an initial Lyme disease test came back negative.
For many people, that result might seem definitive. After all, isn’t the purpose of testing to determine whether a condition is present?
The reality is more complicated.
Lyme disease is caused by bacteria belonging to the Borrelia burgdorferi group and is transmitted primarily through the bites of infected blacklegged ticks in the United States. Diagnosing Lyme disease can involve a combination of medical history, potential exposure, symptoms, physical findings, and laboratory testing.
The accuracy of laboratory testing depends partly on when the test is performed. Many commonly used Lyme disease tests look for antibodies produced by the immune system in response to infection. During the early stages of infection, those antibodies may not yet be detectable. As a result, an early negative test does not always rule out Lyme disease.
However, that doesn’t mean every negative result is unreliable or that persistent symptoms necessarily indicate an undetected infection. The interpretation depends on the specific test, timing, clinical presentation, and other relevant medical information.
In Nicole’s husband’s case, further investigation eventually identified Lyme disease, Bartonella, and Babesia. Those findings added important information to an already complicated medical picture.
They do not, however, establish that the infections caused his Alzheimer’s disease or that the original diagnosis was incorrect.
That distinction is important when discussing the potential relationship between infections and neurological conditions.
What Are Lyme Disease, Bartonella, and Babesia?
Although these infections are sometimes discussed together, they are not the same condition. They involve different organisms, transmission pathways, symptoms, and diagnostic considerations.
Lyme Disease
Lyme disease is a bacterial infection transmitted through the bite of an infected blacklegged tick.
Early symptoms may include fever, fatigue, headache, muscle and joint aches, and a characteristic expanding skin rash called erythema migrans. Without appropriate treatment, the infection can sometimes affect the joints, nervous system, or heart.
Most people with Lyme disease recover following recommended antibiotic treatment, although some experience persistent symptoms after treatment. The causes of those ongoing symptoms remain an area of research, and persistent symptoms alone do not establish that an active infection remains.
Bartonella
Bartonella refers to a group of bacteria associated with several different infections. One of the best-known examples is cat-scratch disease, commonly associated with Bartonella henselae.
Bartonella infections can produce different symptoms depending on the species involved and the patient’s health status. Some infections are associated with fever, swollen lymph nodes, or other systemic complications. Certain Bartonella species can also cause more serious disease, particularly in people with compromised immune systems.
Transmission pathways vary by species. While ticks are frequently discussed in conversations about vector-borne illness, tick transmission of Bartonella to humans has not been conclusively established.
Babesia
Babesiosis is caused by microscopic parasites that infect red blood cells. In the United States, it is most commonly associated with Babesia microti, which can be transmitted through infected blacklegged ticks.
Symptoms may include fever, chills, fatigue, body aches, and, in some cases, complications involving the destruction of red blood cells. Some people experience mild illness or no symptoms, while others can develop severe disease.
Babesiosis is particularly concerning for certain higher-risk groups, including people without a spleen and those with weakened immune systems.
Because these infections can share certain nonspecific symptoms, appropriate medical evaluation is essential when trying to determine what may be contributing to someone’s condition.
Why Complex Symptoms Can Be Difficult to Investigate
Fatigue, brain fog, pain, sleep disturbances, and changes in mood or cognition can occur in many different health conditions. That overlap can make diagnosis challenging.
For example, fatigue may be associated with infections, sleep disorders, medication effects, autoimmune conditions, and numerous other medical issues. Brain fog can also have many potential explanations.
The presence of these symptoms doesn’t automatically point to Lyme disease, mold exposure, or any single cause. And having one diagnosis doesn’t necessarily mean another condition cannot be present.
This is one of the broader themes Nicole and Michael explore throughout their conversation.
When symptoms persist or change, it may be appropriate for healthcare professionals to revisit the clinical picture, consider whether additional evaluation is warranted, and determine whether other conditions need to be investigated. That process should be guided by a patient’s medical history, examination, and evidence-based diagnostic methods rather than assuming that one particular explanation must be responsible.
Where Does Mold Exposure Fit Into the Conversation?
As Nicole and Michael discuss the complexity of chronic illness, their conversation also turns toward environmental health. Specifically, they explore whether conditions inside a person’s home could be contributing to symptoms or creating additional health concerns.
For Michael, this is an important part of the broader conversation about wellness. We spend a significant portion of our lives indoors, and the conditions within those environments can affect our health.
Damp buildings and indoor mold exposure have established associations with certain respiratory and allergic health effects. These can include worsening asthma symptoms, respiratory irritation, and other problems, particularly among susceptible individuals.
But the relationship between mold exposure and Lyme disease is much less clearly established.
There is currently insufficient evidence to conclude that indoor mold exposure directly worsens Lyme disease, causes persistent Lyme symptoms, or prevents someone from recovering from a vector-borne infection.
That doesn’t mean an indoor moisture or mold problem should be ignored. It means the reason for addressing it should be grounded in what we know about unhealthy indoor environments, rather than assuming it explains a separate medical condition.
During the episode, Nicole describes hearing from patients who felt better when they traveled away from their homes. Those experiences may prompt reasonable questions about environmental conditions.
However, feeling better in a different location doesn’t establish that mold was responsible. Changes in stress, activity, sleep, climate, allergens, and other exposures may also influence how someone feels.
If a home has known moisture damage, visible mold growth, or other indicators of an indoor environmental problem, investigating and correcting those conditions is worthwhile regardless of whether someone has Lyme disease.
Why Understanding Your Environment Matters
When Michael works with people concerned about mold in their homes, one of the most important goals is to understand what’s actually happening within the building. That means looking beyond whether mold is visible.
Moisture intrusion, hidden water damage, ventilation issues, and building conditions can all contribute to an environment where microbial growth becomes possible.
For example, a home may have experienced a plumbing leak months earlier. The visible water may have dried, but moisture could have affected materials inside a wall or beneath flooring. Without investigating the source and extent of the damage, the underlying issue may remain unaddressed.
That’s why environmental investigations should focus on identifying actual building problems and determining what corrective actions are appropriate.
It’s also important to remember that indoor environmental testing and medical testing serve different purposes. A mold inspection cannot diagnose Lyme disease, Alzheimer’s disease, or another medical condition. Likewise, a medical diagnosis doesn’t establish that a person’s home contains mold contamination. The two areas may both deserve consideration, but they require different types of expertise.
For homeowners concerned about their indoor environments, practical steps include identifying and correcting moisture problems, maintaining appropriate indoor humidity, addressing water damage promptly, and seeking qualified professional guidance when a more thorough investigation is needed.
The goal isn’t to find something frightening. It’s to get reliable information about the conditions in your home.
What Should You Do When Symptoms Persist but Answers Are Unclear?
One of the most useful parts of Nicole’s conversation with Michael is the discussion about what people can do when they continue experiencing symptoms without a clear explanation.
There isn’t one universal answer. But there are several reasonable steps that may help people navigate the process more effectively.
1. Keep a Clear Record of Your Symptoms
Documenting when symptoms began, how they have changed, and whether anything seems to influence them can provide useful information during medical appointments. This may include noting changes in fatigue, sleep, pain, cognition, or other symptoms.
A symptom journal cannot diagnose a condition or prove that a particular treatment is working, but it may help identify patterns worth discussing with a healthcare professional.
2. Ask Questions About Testing
If testing has been performed, it can be helpful to understand what was tested, why a particular method was selected, and what the results do and do not establish. For Lyme disease specifically, the timing of testing and the patient’s clinical circumstances can affect interpretation.
If symptoms remain unexplained, a qualified healthcare professional can help determine whether additional evaluation is appropriate.
3. Consider the Broader Health Picture
Persistent symptoms may have multiple potential explanations. A comprehensive evaluation may involve reviewing medical history, medications, sleep, existing diagnoses, relevant exposures, and other factors.
If there are specific reasons to suspect an environmental problem, such as documented water damage or visible mold, those conditions should be investigated separately and addressed appropriately.
4. Seek Another Medical Opinion When Appropriate
If symptoms are progressing, new concerns arise, or important questions remain unanswered, seeking another qualified medical opinion may be reasonable.
The goal should be a careful, evidence-based evaluation, not simply finding someone willing to confirm a preferred diagnosis.
5. Be Cautious of Anyone Promising a Universal Explanation
Complex health problems rarely have simple answers. Be wary of claims that one test, supplement, environmental intervention, or treatment can explain or resolve a wide range of unrelated conditions.
Reliable care should acknowledge uncertainty, explain the evidence, and consider potential risks alongside possible benefits.
The Question That Stayed With Nicole
Near the end of the episode, Nicole offers a message to people who are still struggling to find answers.
“I see you and your symptoms are real and you’ve got to keep digging in order to find somebody that will help you figure it out.”
It’s a deeply personal statement from someone who knows what it feels like to search for explanations while watching a loved one suffer.
But there’s an important balance to that message. Continuing to ask questions doesn’t mean rejecting medical expertise or assuming every diagnosis is wrong.
It means being an active participant in your care, communicating openly with healthcare professionals, and seeking thoughtful evaluation when concerns remain unresolved. It also means accepting that medicine doesn’t always have a complete explanation for every symptom or outcome.
Nicole’s experience reminds us how difficult that uncertainty can be. And how meaningful it can be when people feel heard throughout the process.
Final Thoughts
There’s something particularly heartbreaking about Nicole’s story because, even after she found additional answers, she couldn’t change what ultimately happened to her husband.
The discovery of Lyme disease, Bartonella, and Babesia added information to his medical history, but it didn’t provide the ending her family had hoped for.
Today, Nicole has taken that experience and directed it toward a mission focused on diagnostic testing, research, and patient advocacy.
Her conversation with Michael also raises a broader point about health. Understanding what someone is experiencing may require looking at multiple factors, asking careful questions, and recognizing the limits of what current evidence can tell us.
Sometimes that means investigating an infection. Sometimes it means revisiting a medical diagnosis or evaluating another possible condition. And when there are signs of a problem within someone’s home, it may also mean taking a closer look at their indoor environment.
None of those investigations should begin with the assumption that a particular answer must be found. They should begin with a commitment to understanding what’s actually happening.
Because for Nicole, the question was never simply what to call her husband’s illness.
She wanted to understand why.
And today, she’s working to help other families get clearer answers.
Meet Today’s Guest: Nicole Bell
Nicole Bell’s work today is inseparable from the experience that brought her into the field.
After losing her husband in 2022, she continued pursuing the questions that had shaped her family’s journey. As CEO of Galaxy Diagnostics, Nicole focuses on improving access to diagnostic information about vector-borne infections and supporting greater awareness of the challenges involved in identifying them.
Through her book, What Lurks in the Woods, she also shares the personal side of that experience. Her story is not proof that Lyme disease causes Alzheimer’s disease, nor does it establish that a different diagnosis would necessarily have changed her husband’s outcome.
What it does illustrate is how difficult it can be for families to navigate serious illness when they are trying to understand multiple diagnoses, uncertain test results, and rapidly changing circumstances.
And it shows how one person’s experience can become the motivation for work intended to help others.
