Episode 612: Lyme Disease Nearly Took Her Life. Now She's Funding Treatment – Darlene O'Connor | LIVE from ILADS

After seeing approximately 22 medical practitioners, undergoing more than a dozen procedures, and facing a possible ALS diagnosis, Darlene DeBauer O'Connor finally received a Lyme disease diagnosis that changed her life. Today, she's helping other families overcome one of the biggest barriers to healing: the cost of care.

In this LIVE from ILADS interview, Tick Boot Camp co-host Rich sits down with Darlene DeBauer O'Connor, Executive Director of the Northeast Lyme and Associated Diseases (NELAD) Resource Foundation, to discuss her family's experience with Lyme disease, the devastating consequences of delayed diagnosis, and a new nonprofit providing financial assistance for testing and treatment.

Recorded at the 2025 International Lyme and Associated Diseases Society (ILADS) Conference in San Antonio, Texas, the conversation explores Lyme disease misdiagnosis, ALS-like symptoms, neurological complications, family-wide tick-borne illness, treatment costs, patient advocacy, and financial grants of up to $3,000 per person annually.

Darlene shares how her diagnosis on October 16, 2013, led to other family members seeking answers, why her brother's death strengthened her commitment to advocacy, and how years of educational outreach revealed a critical problem: Knowing where to find help means little when patients cannot afford to access it.

Her story is one of resilience, family, community, and turning personal suffering into practical support for others.

From Possible ALS to a Lyme Disease Diagnosis

In her 40s, Darlene was working as a public school teacher in Massachusetts when she began experiencing increasingly debilitating symptoms.

What started as fatigue and headaches progressed into a frightening combination of physical, neurological, and psychological problems.

Her symptoms included:

• Extreme fatigue and difficulty getting out of bed
• Severe headaches and recurring fevers
• Migrating pain throughout her body
• Muscle weakness, tripping, and falling
• Difficulty walking
• Bladder control problems
• Neurological and psychological symptoms

Darlene consulted approximately 22 medical practitioners across multiple specialties, including cardiology, neurology, and infectious disease.

She underwent more than a dozen procedures while searching for an explanation.

Eventually, clinicians began considering amyotrophic lateral sclerosis (ALS), a progressive neurological disease.

The possibility was devastating.

Darlene remembers becoming increasingly frightened as her condition worsened and her independence disappeared.

Ten Negative Lyme Tests Before Getting Answers

Despite living in a region where Lyme disease is common, Darlene reports receiving approximately 10 negative Lyme disease tests during her diagnostic journey.

On October 16, 2013, her sister brought her to a practitioner in Wilton, Connecticut.

After reviewing her symptoms and medical history, the practitioner diagnosed her clinically with Lyme disease and investigated possible additional infections.

Darlene describes that appointment as the turning point in her life.

She calls the anniversary her personal “D-Day,” meaning Diagnosis Day.

For the first time, she felt she had an explanation for the illness that had disrupted her life.

She began treatment and gradually experienced improvements, although she also recalls difficult reactions during the process.

Her experience highlights the importance of interpreting Lyme disease testing alongside clinical findings and exposure history.

Antibody tests can produce false-negative results, particularly early in infection. However, repeated negative results later in an illness require careful consideration of other possible diagnoses as well.

For more information, explore Tick Boot Camp's Lyme disease testing resources.

When One Diagnosis Leads an Entire Family to Seek Answers

Darlene's diagnosis had consequences far beyond her own health.

She is the youngest of five children in a close-knit Italian-American family.

After learning more about Lyme disease and associated infections, she began recognizing similarities between her experiences and symptoms reported by siblings, nieces, nephews, and other relatives.

Family conversations increasingly focused on tick exposure, unexplained symptoms, and the possibility of tick-borne illness.

Darlene describes a cascade of additional diagnoses among family members.

She explains that relatives were evaluated by different healthcare professionals rather than a single practitioner.

Over time, she reports that most affected family members experienced meaningful improvement.

The family's experiences strengthened her belief that education and early recognition are essential.

Importantly, similar symptoms within a family do not necessarily establish a shared infection. Tick exposure, other medical conditions, and individual diagnostic findings must be evaluated separately.

Losing Her Brother and the Questions Surrounding Lewy Body Dementia

One of the most emotional moments in the interview comes when Darlene discusses the death of her brother.

She believes complications associated with vector-borne illness contributed to his neurological decline and eventual diagnosis of Lewy body dementia.

She describes a period during which he appeared to improve, followed by worsening symptoms and rapid deterioration.

His death remains a profound loss for the family.

Darlene's experience raises questions about the relationship between infectious diseases, neurological inflammation, and neurodegenerative conditions.

However, a causal relationship between Lyme disease or other tick-borne infections and Lewy body dementia has not been established.

Her brother's story reflects the family's understanding of his illness and the grief that continues to motivate their advocacy.

Why Tick Prevention Education Matters

Before becoming ill, Darlene believed she understood tick prevention.

She had worked as an education coordinator for Mass Audubon and was familiar with outdoor safety.

However, she admits that her understanding of Lyme disease was limited.

She believed avoiding heavily wooded areas and removing visible ticks would provide adequate protection.

Her perspective changed dramatically after her diagnosis.

Darlene also recalls a tick bite involving her son at a Massachusetts hospital and wishing the tick had been saved for identification.

Rich and Darlene discuss the importance of recognizing that tick exposure can occur in ordinary environments, including residential yards, gardens, and recreational spaces.

They also reflect on how little Lyme disease education they received during their school years in the Northeast.

Their conversation emphasizes that prevention education should begin long before someone becomes ill.

For practical guidance on tick checks, tick removal, and what to do after a bite, visit Tick Boot Camp's Tick Bite Blueprint.

Turning Lyme Disease Into a Mission

As Darlene began recovering, she and her sister became involved with Central Mass Lyme, a Massachusetts organization focused on education and awareness.

Darlene served on its conference committee, while her sister participated on the organization's board.

Together with other advocates, they helped organize four educational conferences.

One conference attracted approximately 500 attendees.

Speakers included prominent Lyme disease clinicians and researchers such as:

• Dr. Stephen Phillips
• Dr. Daniel Cameron
• Dr. Neil Spector
• Dr. Bill Rawls

These events connected patients, caregivers, healthcare professionals, authors, and advocates.

Darlene also began speaking publicly about her family's experience.

Her presentations resonated with people who had spent years searching for answers.

But as more patients approached her after speaking engagements, she noticed a recurring problem.

People weren't simply asking what Lyme disease was.

They wanted to know how to find a knowledgeable practitioner and how to pay for testing and treatment.

The Missing Piece: Financial Assistance for Lyme Disease Patients

Darlene and her sister realized that education alone could not solve the challenges facing many families.

Even when patients identified a healthcare professional they wanted to see, financial barriers often prevented them from obtaining care.

Some practitioners had long waiting lists.

Others required out-of-pocket payments that families could not afford.

Testing, medical appointments, medications, and supportive therapies could create substantial financial strain.

Darlene and her sister decided to establish an organization that would combine education and emotional support with direct financial assistance.

That decision led to the creation of the Northeast Lyme and Associated Diseases Resource Foundation, commonly known as NELAD.

What Is the NELAD Resource Foundation?

The NELAD Resource Foundation is a nonprofit organization focused on helping people affected by Lyme disease and associated illnesses.

Its mission includes three interconnected areas:

Education and awareness: Helping patients, families, and communities better understand Lyme disease and associated conditions.

Emotional support: Connecting individuals and families through support groups and shared experiences.

Financial assistance: Providing grants to help eligible patients access testing and treatment.

Although NELAD is based in New England, particularly Massachusetts and Rhode Island, Darlene explains that its assistance is not limited to those states.

At the time of the interview, the foundation had already provided funding to recipients in 10 additional states, including Texas.

Darlene emphasizes that the organization focuses on families and does not impose an age limit on applicants.

NELAD Grants: Up to $3,000 Per Person Per Year

One of the most valuable parts of the interview is Darlene's explanation of NELAD's financial assistance program.

At the time of recording, the foundation offered grants of up to $3,000 per person, per year, subject to eligibility, available funding, and the organization's approval process.

Because the program supports individual family members, more than one person within a household may potentially qualify.

Darlene also explains that previously funded applicants may reapply in subsequent years.

The grants are intended to reduce financial barriers to Lyme disease-related testing and treatment.

Darlene describes assistance for conventional medical care as well as certain integrative services when supported by documentation from a practitioner.

The foundation evaluates applications and determines funding based on its own criteria.

Grant availability, covered services, and funding limits may change. Applicants should confirm current requirements directly with NELAD.

How to Apply for NELAD Financial Assistance

Darlene explains that the foundation deliberately designed its application process to be manageable for people dealing with significant illness.

Applicants can begin through the organization's website.

The process she describes includes:

1. Complete a preliminary application. Applicants can submit the form online or print and mail it.
2. Provide basic information. The initial form allows the foundation to review the request before collecting extensive documentation.
3. Indicate willingness to provide supporting records. These may include tax documents, disability information, or a practitioner's recommendation.
4. Wait for application review. The foundation evaluates requests and determines eligibility and available assistance.

Darlene emphasizes that patients do not need to gather every supporting document before beginning the preliminary process.

This approach is intended to make applying less overwhelming for people already managing difficult health circumstances.

Visit NELAD.org to learn about financial assistance and apply.

Donated Lyme Disease Testing and Additional Support

Darlene also announces that a specialty laboratory, identified in the transcript as IGeneX, committed to donating 10 Lyme disease tests annually to support the foundation's work.

She describes this partnership as an important opportunity to help patients who cannot afford certain diagnostic services.

The interview also discusses NELAD's willingness to consider different treatment-related expenses when supported by a healthcare practitioner's recommendation.

These may include medications and certain complementary approaches.

However, the foundation's willingness to fund a service should not be interpreted as evidence that the service is medically effective.

Patients should discuss the risks, benefits, and supporting evidence for any proposed treatment with qualified healthcare professionals.

Why Lyme Disease Advocacy Requires Collaboration

Darlene repeatedly emphasizes the importance of organizations working together.

Although NELAD developed from her experiences with Central Mass Lyme, she continues to value that relationship.

She believes the challenges facing the Lyme disease community are too significant for any one organization to address alone.

Education, patient support, research, financial assistance, and public policy advocacy all serve important purposes.

Rich agrees and invites Darlene and her sister to return for a longer Tick Boot Camp interview.

He wants listeners to learn more about the family's experiences and the resources available through NELAD.

Their conversation demonstrates how different advocacy organizations can complement one another while helping patients find the support they need.

Key Takeaways

• Lyme disease can be difficult to diagnose. Darlene saw approximately 22 practitioners and received numerous negative tests before her diagnosis.
• Severe symptoms deserve thorough evaluation. Her illness included neurological problems, weakness, difficulty walking, and symptoms that raised concerns about ALS.
• A diagnosis can affect an entire family. Darlene's experience prompted relatives to investigate their own unexplained symptoms.
• Loss can inspire advocacy. Her brother's death strengthened her commitment to helping others.
• Education is essential. Her work with Central Mass Lyme helped bring conferences and patient resources to the community.
• Financial barriers can prevent access to care. Darlene and her sister founded NELAD after recognizing that many patients could not afford testing and treatment.
• NELAD provides direct financial assistance. At the time of the interview, grants were available for up to $3,000 per person annually.
• Families are a priority. The foundation considers applicants of all ages and may assist multiple members of a household.
• Patients can apply online or by mail. NELAD designed its preliminary application to minimize the initial paperwork burden.
• Collaboration strengthens advocacy. Patient organizations can work together to expand education, financial assistance, and community support.

About This LIVE from ILADS Interview

Recorded at the 2025 International Lyme and Associated Diseases Society Conference in San Antonio, Texas, this conversation features Darlene DeBauer O'Connor, Executive Director of the Northeast Lyme and Associated Diseases Resource Foundation.

Rich and Darlene discuss her 2013 Lyme disease diagnosis, her family's experiences with tick-borne illnesses, the emotional impact of losing her brother, and the creation of a nonprofit dedicated to helping patients access care.

The interview provides practical information about NELAD's grant program and its efforts to support families facing the financial burden of Lyme disease.

Explore additional patient stories, advocacy organizations, and healthcare professionals through Tick Boot Camp's LIVE from ILADS podcast series.