From Sun Allergy to POTS Diagnosis: Ashley's Experience and OU Health's Pioneering Research

For Ashley Lamb, 30, the first sign something was wrong came in the most unexpected way. She developed a mysterious sun allergy that appeared after she moved from Florida to Texas in 2017.

That was just the beginning of a medical journey that would take years to unravel, ultimately leading her to Oklahoma’s flagship academic health system, OU Health, where leading-edge research and breakthroughs are taking place alongside the research and education at the University of Oklahoma.

"I would get to client sites, and they would be concerned for me," Ashley said about her early symptoms while working as a traveling consultant. "They'd say, 'Do you need to take a moment?' and I'd have hives all over my face."

What started as an unusual reaction to sunlight gradually expanded into a constellation of bewildering symptoms. Heart palpitations, joint pain and extreme fatigue led her previous doctors to attribute these symptoms to her demanding job and stress levels. It wasn't until after several bouts of COVID-19, including a suspected early case in February 2020, that things took a dramatic turn.

In May 2021, while working in her yard in Oklahoma City, Ashley experienced what she and her partner initially thought was either a seizure or stroke.

"I completely lost my vision and my hearing, my words were slurring, and I felt like I couldn't access my muscles," she said.

This frightening episode led her to internal medicine physician Dr. Joanne Skaggs at OU Health, beginning a partnership that would prove crucial in solving the mystery of her condition.

The Search for an Answer

"Patients will tell you everything you need to know," Dr. Skaggs said. "You just have to listen. It's sort of like investigative work because Ashley had many symptoms with many moving parts."

Despite numerous tests and specialist visits, answers remained elusive. As Dr. Skaggs said, Ashley’s condition wasn’t like diabetes or high cholesterol where a simple lab test can provide a diagnosis.

Ashley’s symptoms continued to worsen. Simple tasks like folding laundry would send her heart rate soaring to 130-140 beats per minute, as if she were sprinting. She needed a wheelchair in public spaces. Even basic morning routines became overwhelming.

"I would be exhausted just waking up," Ashley said. "Making breakfast was exhausting. It would be early afternoon by the time I finished eating breakfast."

The breakthrough came when Ashley, drawing on her project management background, created a detailed five-page health report tracking her symptoms, vital signs and medical history. This comprehensive documentation led Dr. Skaggs to order a tilt table test in October 2023 – a test that would finally provide answers.

During the test, Ashley’s blood pressure plummeted to 60/40, her heart rate spiked to 137, and she nearly went into cardiac arrest. These dramatic results led OU Health Rheumatologist, Dr. Aikaterini Thanou, to refer Ashley to OU Health Cardiologist, Dr. Stavros Stavrakis who diagnosed her with Postural Orthostatic Tachycardia Syndrome (POTS), a condition where the autonomic nervous system, which controls automatic body functions like heart rate and blood pressure, malfunctions when changing positions.

Yet, what causes POTS remains a medical mystery for the most part, making it difficult to diagnose.

"POTS has a constellation of clinical symptoms," Dr. Skaggs said. "You have to correlate your symptoms and look at some diagnostic testing. We think POTS is related to the autonomic system within our bodies. There's a predilection for females, so the question is whether it is related to hormones. And oftentimes it's triggered by things like a major illness."

Unraveling the Mystery of Post-COVID POTS

The diagnosis was just the beginning. In a fortunate twist of fate, OU Health and the University of Oklahoma were selected as one of over 40 sites nationwide participating in a groundbreaking clinical trial sponsored by Duke University in partnership with the Mayo Clinic. The national study, which will eventually include 1,200 participants, aims to understand the connection between COVID-19 and POTS, and evaluate potential treatments. Dr. Stavros Stavrakis is the Principle Investigator and is also responsible for leading previous promising POTS discoveries using vagus nerve stimulation published in 2024.

Prior to the establishment of the OU Health POTS program and study, headed by OU Health Cardiologist Dr. Stavros Stavrakis, M.D., Oklahoma patients were sent to Vanderbilt Health in Nashville for treatment. .

"There's a huge uptick in POTS diagnoses post-COVID," Dr. Skaggs said. "A study in 2023 found that COVID survivors can develop POTS within six to eight months of infection. COVID can do so many things to your body. We know that long COVID is often associated with POTS."

As the only healthcare system in Oklahoma conducting this pioneering research, OU Health's participation puts it at the forefront of understanding post-COVID POTS. Ashley began receiving weekly IVIG (intravenous immunoglobulin) infusions in August 2023 as part of the trial, and the results have been promising.

"I've noticed a difference in my nerves," she said, saying that previously excruciating needle sticks have become more manageable. Her cognitive function has improved too, with family and friends noting she's more present and engaged, especially in the evenings.

The journey has inspired Ashley to pursue a new direction in healthcare. She recently completed training as a certified health and wellness coach and dreams of working in healthcare to help others experiencing chronic illness.

"I feel so lucky to live 11 minutes away from OU Health and be connected with all these practitioners," she said.

Dr. Skaggs and the OU Health team continue to support Ashley through her treatment journey, which will continue until April 2025. Their drive to solve complex post-COVID conditions like POTS offers hope not just for Ashley, but for countless others struggling with similar symptoms.

"It's really exciting that patients have access to these amazing, funded studies right here," Dr. Skaggs said. "You don't have to leave the state of Oklahoma to get this kind of treatment."

Find a primary care, family medicine or internal medicine provider at OU Health or learn more about clinical trials at OU Health.