For people living with chronic illness, getting a diagnosis can sometimes be just as difficult as living with the symptoms themselves.
Fatigue, brain fog, digestive problems, pain, inflammation, and unusual reactions can appear unrelated when viewed individually. Patients may visit multiple doctors and specialists, only to leave with another unanswered question.
That was one of the central themes when Sam Tejada, CEO and Founder of Liquivida®, welcomed Dr. Tania Dempsey, a leading expert in complex chronic illness and mast cell activation syndrome (MCAS), to “A Healthy Point of View podcast. The conversation began as part of Sam’s Lyme disease series but quickly expanded into mast cell activation syndrome (MCAS), immune dysfunction, complex chronic illness, testing, and the challenges of treating patients whose symptoms do not fit neatly into one diagnosis.
For Dempsey, understanding those patients starts with looking at the whole story.
Lyme Disease May Not Be the Real Problem | Dr. Tania Dempsey | Ep. 166
A Calling That Started at Five
Dempsey’s interest in medicine began when she was only five years old.
She grew up in a first-generation family with Eastern European roots, and her grandmother had served in a nursing role during and after World War II. Dempsey remembers listening to her grandmother talk about the people she helped and the experiences she had endured.
Those stories left a lasting impression.
Dempsey eventually attended Cornell University, Johns Hopkins School of Medicine, and completed her residency at NYU in New York City. Her residency included time at Bellevue Hospital, an experience she described as demanding but invaluable because residents were given significant responsibility and learned medicine directly on the front lines.
That early desire to help people eventually led her toward one of medicine’s more difficult challenges: patients whose illnesses cannot be explained by a single diagnosis.
Looking Beyond Lyme Disease
Although Lyme disease was the starting point for the discussion, Dempsey emphasized that chronic illness can be much more complicated than Lyme alone.
Patients dealing with vector-borne illness may also have other infections, while additional factors can influence how their bodies respond. Dempsey’s approach is therefore to look beyond a single organism and consider everything that may be contributing to the patient’s condition.
She described this as the body’s overall “load.”
A person’s health can be influenced by infections, environmental exposures, mold, nutritional issues, hormonal changes, and other stressors. Two people can encounter similar health challenges and have very different outcomes because their bodies are not starting from the same place.
That is why Dempsey spends considerable time taking a patient’s history. Rather than focusing only on the symptoms that brought someone into the office, she wants to understand what happened before those symptoms appeared and how the patient’s health changed over time.
The Mast Cell Connection
One of the most important pieces of that puzzle for Dempsey is mast cell activation syndrome.
Mast cells are part of the immune system and release chemical mediators in response to perceived threats. When mast cell activity becomes dysfunctional, patients can experience symptoms across multiple systems.
Dempsey discussed the overlap between MCAS and conditions including POTS, hypermobility, endometriosis, lipedema, and other chronic conditions. She also sees mast cell activation in patients dealing with Lyme disease and other infections.
This overlap can make diagnosis particularly difficult.
A patient may have several conditions at the same time, rather than one disease explaining every symptom. Dempsey believes that understanding the mast cell component can sometimes help physicians make sense of the bigger picture and determine where treatment should begin.
She was careful, however, not to suggest that MCAS explains every case. Sometimes autoimmune disease or other factors are involved as well.
The point is to investigate rather than assume.
Why Testing Can Be Complicated
That investigation can involve laboratory testing beyond the routine blood work many patients receive.
When Dempsey suspects mast cell activation, she discussed testing for different mediators released by mast cells, including histamine, heparin, N-methylhistamine, and prostaglandin D2. She also emphasized the importance of the patient’s clinical history alongside laboratory results.
But access to testing can itself become a problem.
Dempsey spoke about regulatory restrictions in New York that can prevent certain laboratories from offering tests that are available to patients in other states. She questioned why patients in different parts of the country should have different access to information about things such as nutritional deficiencies or their microbiome.
For someone who has already spent years searching for an explanation, another barrier can make that process even harder.
When Chronic Illness Becomes a Puzzle
Dempsey’s approach reflects a broader shift in how some practitioners think about chronic illness.
Instead of asking which single disease is responsible for a patient’s symptoms, she looks at how several factors may be interacting.
That can mean asking when symptoms began, what happened before they appeared, whether infections were involved, what environmental exposures may have occurred, and how the patient’s immune system responded.
She explained that many of her patients have a combination of problems. Treating one condition without addressing another may leave the patient struggling.
Her hope is that by addressing one important part of the immune system, other areas may become easier to treat as well.
Treatment Has to Be Personal
When Tejada asked about the tools she uses in her practice, Dempsey did not describe one universal protocol.
Instead, she stressed patient selection.
For some patients, particularly those who are highly sensitive or reactive, she may begin with approaches such as intravenous phosphatidylcholine. She also discussed therapeutic plasma exchange (TPE), SOT, and other therapies used in selected cases.
Dempsey explained that TPE can be used to remove certain inflammatory mediators from the blood. She also described combinations involving phosphatidylcholine, TPE and, in some cases, exosomes.
But she emphasized caution.
Highly reactive patients may respond poorly to aggressive interventions, so treatment has to be tailored to the individual rather than applied as a standard formula. She shared an example of a patient who underwent multiple TPE sessions followed by an exosome infusion and later reported that her mast cell symptoms had resolved.
Dempsey also acknowledged that more research is needed around many of these emerging approaches.
The Brain and Chronic Inflammation
The conversation eventually moved into another area that concerns many patients: cognitive health.
Sam asked Dempsey about the relationship between infections, inflammation and cognitive decline.
Dempsey said cognitive problems can occur in younger patients as well as older adults. Younger people may struggle with attention, focus and concentration, while older patients can develop more significant memory and cognitive difficulties.
She believes this area deserves considerably more research and described the possibility that immune dysfunction, infections, and inflammation may all play a role. She presented these ideas as areas that still need investigation rather than established conclusions.
That uncertainty is part of what drives her interest in research.
Keep Fighting
Toward the end of the conversation, Sam asked Dempsey what message she would leave with someone who sees themselves in the discussion.
Her answer was simple:
Keep fighting.
Dempsey encouraged patients to advocate for themselves, continue researching, and look for healthcare professionals willing to listen and investigate. She acknowledged that finding the right person can be difficult, but believes there are physicians and practitioners who can help.
It is fitting advice from someone whose own journey into medicine began with hearing stories from her grandmother about helping people through difficult circumstances.
Decades later, that same motivation appears to be at the heart of Dempsey’s work.
Her conversation with Sam Tejada offered a reminder that complex chronic illness rarely comes with simple answers. For some patients, finding those answers may require looking beyond one diagnosis, one test, or one symptom and instead understanding how the pieces of their health fit together.
And sometimes, before anything else, it requires someone willing to listen.