When Nikki Schultek became seriously ill at 34, she was training for a half-marathon and felt healthier than she had in years. Then, seemingly out of nowhere, her health began to change.
It started with severe breathing problems. She had asthma, but this felt different. Soon, other symptoms followed: intense bladder pain, joint pain, debilitating fatigue, digestive problems, neurological symptoms, and a cardiac arrhythmia.
She began seeing specialists, but each one seemed to focus on a different piece of the puzzle.
Her lungs were treated separately from her bladder. Her neurological symptoms were considered separately from her fatigue. No one seemed to be asking whether all of these problems could be connected.
That experience eventually changed the course of her life.
Schultek, now a researcher, patient advocate, and what she calls a “collaboration architect,” joined Sam Tejada, CEO and Founder of Liquivida®, on “A Healthy Point of View” podcast to discuss her journey through Lyme disease, chronic illness, and her ongoing work to investigate the potential role of infections in complex diseases.
The Lyme Disease Connection Medicine Can’t Afford to Ignore | Nikki Schultek | Ep. 165
When the Pieces Started Connecting
During the worst period of her illness, Schultek was exhausted and in constant pain. Her bladder symptoms became so severe that she remembers sitting outside church because she could not tolerate wearing normal clothes. She would sit in the parking lot, pray, and cry.
At the same time, she was searching for an explanation.
One clue came when she was prescribed azithromycin for what doctors believed was an atypical pneumonia. Her breathing improved dramatically within about a day. But when the antibiotic left her system, the symptoms returned.
That experience made her wonder whether an infection might be behind more than just her respiratory problems.
She began researching her diagnoses together rather than individually. Eventually, she discovered research by Charles W. Stratton at Vanderbilt University examining a possible connection between Chlamydia pneumoniae and interstitial cystitis, the painful bladder condition she had developed.
The connection caught her attention.
Chlamydia pneumoniae was associated with respiratory disease, and she had experienced severe respiratory symptoms before developing problems throughout her body. She began digging deeper into the research.
Eventually, she contacted Stratton herself.
He responded, and that conversation became a turning point. Stratton eventually became her physician, mentor, and collaborator. Further investigation supported diagnoses of Lyme disease and other infections.
As Schultek began to recover, however, she became increasingly interested in the larger problem.
Why were patients with complicated illnesses being treated as though every symptom existed independently?
And how many other people were searching for answers without anyone connecting the dots?
From Patient to Collaboration Architect
Schultek did not begin her career as a researcher. She studied business and later worked in pharmaceutical sales, including positions involving neuroscience and anti-infectives.
But her experience as a patient changed the way she viewed medicine.
She began thinking about what could happen if researchers who were studying different infections, diseases, and biological systems actually worked together.
That idea eventually led to Intracell Research Group and the Alzheimer’s Pathobiome Initiative.
Rather than approaching a disease from one discipline, Schultek’s work focuses on bringing different experts into the same conversation. Researchers can share data, specimens, ideas, and perspectives that might otherwise remain separated within individual fields.
Her role is not to have all the answers herself. It is to help create the environment where people with different pieces of the puzzle can work together.
That philosophy has become central to her work.
Looking at Alzheimer’s Through a Different Lens
One of the major questions Schultek is now investigating is whether infections could play a role in Alzheimer’s disease and other neurological conditions.
The Alzheimer’s Pathobiome Initiative brings together researchers to investigate potential relationships between infectious organisms, immune responses, inflammation, and neurodegenerative disease.
Schultek is careful not to suggest that every case of Alzheimer’s is caused by an infection. Instead, she believes the possibility deserves serious investigation.
She has also questioned whether some of the features researchers traditionally associate with Alzheimer’s might sometimes be responses to an underlying problem rather than the original cause.
During the podcast, she used an analogy: if amyloid and tau are like firefighters arriving at a fire, researchers should also ask what started the fire.
For her, asking that question does not mean abandoning established research. It means being willing to investigate other possibilities.
That same philosophy extends beyond Alzheimer’s. Her collaborative work has included discussions around Parkinson’s disease, ALS, epilepsy, and pediatric neurological conditions.
The common thread is the question of whether infections and the body’s response to them may contribute to diseases that are traditionally viewed through entirely different frameworks.
Why Testing and Diagnosis Matter
Schultek’s own experience also shaped her concerns about testing.
She knows firsthand what it is like to have serious symptoms while not receiving a straightforward answer. Her journey involved multiple diagnoses, multiple specialists, and eventually the recognition that infections were part of the picture.
She believes patients with complicated, multi-system symptoms may need practitioners who understand chronic infections and can look at the entire patient rather than focusing on a single symptom.
For Schultek, this is particularly important with Lyme disease, where patients can have complex symptoms and may not always receive clear answers from conventional testing.
Her message is not that every unexplained illness is Lyme disease.
It is that infection should remain part of the conversation when the symptoms and history warrant investigating it.
The Research Challenge
Schultek’s biggest frustration today is not a lack of ideas.
It is the difficulty of getting those ideas funded.
The kind of research she wants to advance requires collaboration between multiple disciplines, institutions, and researchers. That takes time, coordination, specimens, data, and money.
She also believes that traditional peer-review systems can make interdisciplinary research difficult.
A proposal involving infectious disease, immunology, and neurodegeneration may require reviewers who understand all three areas. Without that broader perspective, research that falls outside an established field can be difficult to evaluate fairly.
Schultek believes researchers need room to investigate questions that challenge existing assumptions, provided those questions are approached rigorously.
For her, questioning an established theory is not an attack on science.
It is part of science.
The Person Behind the Research
Despite the seriousness of her work, Schultek’s motivation remains deeply personal.
During the worst part of her illness, she remembers wondering whether she would live long enough to see her children grow up.
That fear has stayed with her.
She now has two sons and says much of her motivation comes from wanting to leave them a healthier world than the one she encountered as a patient.
She also understands the emotional toll of chronic illness. She spoke about the importance of laughter, family, friendships, and finding people who understand what it means to live with an illness that may not be visible to others.
She herself looked healthy when she was extremely sick. She had been training for a half-marathon, yet internally she was struggling just to get through the day.
That experience changed how she views other people.
Someone may look completely healthy and still be dealing with something incredibly difficult.
Connecting the Dots
When Sam asked Schultek what success would ultimately look like, her answer was bigger than one diagnosis or one research project.
She wants to see researchers collaborate more openly, investigate potential causes of chronic disease from multiple angles, and develop better ways to identify problems before they become irreversible.
Her journey began with a patient who could not understand why so many things were going wrong at once.
She found answers by doing something that the medical system around her had struggled to do: connect the pieces.
Today, that is what she is trying to do for other patients.
Whether the answer ultimately involves an infection, an immune response, or something else entirely, Schultek believes the questions need to be asked, and they need to be investigated together.
Because sometimes progress does not come from finding another person to look at one more piece of the puzzle.
It comes from finally putting all the pieces on the same table.