The Doctor Can Heal You Now

“She was a very positive, happy person–an old soul,” Cinnamon said.

Anna, then 15, was also funny. Cinnamon remembers one night when a group of young women and their mothers decided to go out for dinner. The girls were in Dallas to treat their postural orthostatic tachycardia syndrome (POTS), a disorder that affects the network of controls operating all of the body’s unconscious actions.

POTS can cause dizziness and fainting, which can be triggered by overstimulation. That night, Cinnamon’s group was seated near a rambunctious young soccer team screaming and running around the restaurant.

“I’m sitting there trying to breathe through the noise, and our moms started to look at each other, like, Oh gosh, this is not good for our kids,” said Cinnamon, who’s now 31 and lives in Illinois. “And then Anna says, ‘Wouldn’t it be funny if we all started fainting like goats, one after another?’ Everyone just started laughing.”

The girls kept in touch after their treatment, but Cinnamon only saw Anna once more. Three years after that dinner, on her 19th birthday, Anna died in a Florida hospital, hundreds of miles away from her hometown in Louisiana.

The official cause of Anna’s death, necrotizing pancreatitis, is not a known side effect of POTS—and is rarely fatal when treated correctly. Before she died, Anna had entrusted her treatment to a Florida doctor who said he could help her chronic illness. Her parents say that misguided faith is what killed her.

In an ongoing malpractice lawsuit filed in Florida, the Burgesses allege that the doctor they’d trusted in the months before Anna’s death had convinced them that Western medicine would make her sicker—and prevented her from getting the lifesaving treatment she needed.

The doctor, Marvin “Rick” Sponaugle, markets himself online as an expert in hard-to-cure conditions and chronic illnesses, touting his knowledge of brain chemistry and infectious diseases. His videos of disabled people standing up from their wheelchairs draw patients willing to pay huge sums of money from all over the world to his clinic outside of Tampa, Florida.

Sponaugle is a licensed MD. However, anesthesiology is the only board certified specialty listed on his Florida practitioner profile, and he does not promote himself as having any specialized training on the conditions he claims to be able to treat. On his website, there are no links to any research papers, peer-reviewed articles, or other published work on the treatments he provides. Rather, he appears to attribute his expertise to “treating thousands of patients.”

The Burgesses would not speak on the record for this piece. But other patients interviewed for this story, including some who knew Anna, said that despite the glowing reviews of Sponaugle’s clinic, they left his care sicker than when they arrived—and thousands of dollars poorer.

In an email sent to VICE, Sponaugle’s lawyer in the malpractice suit declined to comment fully due to the ongoing litigation, but referred to court papers denying any liability for Anna’s death.

As public mistrust in science grows and ideas like the anti-vaccine movement gain traction online, more and more people are finding themselves in situations like Anna’s family. Plagued by mysterious diseases that stymie medical experts and lack research funding, they turn to alternative doctors, often sourced through the internet and word of mouth, who use scientifically untested methods to treat patients.

“I could have thousands of patients calling and writing you about how I’ve brought them out of wheelchairs, reversed their dementia—all kinds of things,” Sponaugle said in one of a series of voicemails, some left after his lawyer had told this reporter not to contact him directly.

There’s little regulation or oversight of alternative medicine doctors, in Florida and nationwide. At the time of this article’s publication, Sponaugle was still taking new patients and practicing medicine with a clear license, despite the ongoing malpractice suit and at least two active patient complaints logged with the state. Any enforcement or punishment against doctors like Sponaugle, experts say, often comes after tragedies like Anna’s.

“As far as the protection of the public from practitioners who use unproven or pseudoscientific diagnostic methods and treatment, the only thing standing between them and those practitioners are the medical board and the malpractice system,” said Jann Bellamy, a Tallahassee-based attorney and founder of the Society for Science-Based Medicine. But, she said, action “generally only happens after someone’s been hurt.”

Healthy people feel fine when the table shifts, but POTS patients “feel like they’re going to die,” Chung said. “They don’t have enough blood flowing to their organs.”

POTS is a CDC-recognized syndrome characterized by the body’s inability to regulate the heart rate when a person goes from lying to standing. The condition was only named by researchers in 1993, but experts say that many diseases historically blamed on women’s fatigue and anxiety are likely the result of underlying disorders like POTS that affect the body’s nervous system.

The largest survey of POTS patients was published in the Journal of Internal Medicine last year, drawing from nearly 5,000 patient surveys in several online forums, including some Anna Burgess posted in while she was alive.

The survey found that 94 percent of POTS patients are women, and many struggle to be believed and properly diagnosed. More than three quarters of survey respondents said that at least one doctor suggested a psychiatric or psychological cause for their symptoms.

“I feel emotionally bad about these people,” Chung said. “They go to three or four doctors and get dismissed, told that everything is normal. They begin to think they’re crazy.”

Accepted treatment for POTS is almost entirely lifestyle-based: increased salt intake and exercise to increase low blood volume. Experts say many patients will simply grow out of their symptoms or learn to live with mild discomfort. But some sufferers continue to struggle for years with extreme symptoms and side effects like trouble sleeping or GI issues.

Chung said he has seen POTS patients and others with similar disorders turn to alternative medicine “so many times.”

Cinnamon, who shuttled between doctors for years before her diagnosis, can see the appeal of holistic doctors.

“I'm sitting here and they're compassionate. They're validating me,” she said. “With mainstream medicine, you feel constantly rushed, feeling like people are making decisions about your health who don't understand your condition.”

In 2012, when Anna Burgess was 14, she posted in a Facebook support group for POTS patients with questions about her sleep apnea. By 2016, she was posting in at least one group propagating medically unsubstantiated theories popular in the alternative medicine community.

“I believe my POTS was caused by mold toxicity and Lyme disease,” she wrote in one June 2016 post. Cinnamon also remembers Anna sending her Facebook messages about the potential links between mold, chronic Lyme disease, and disorders like POTS. (The research is preliminary, but experts on POTS believe that an autoimmune disruption—like you would have with a Lyme infection—might contribute to the development of POTS and other mysterious syndromes.)

People with poorly understood disorders often point to the medical establishment’s seeming reluctance to divert funding to these types of illnesses. Patients with myalgic encephalomyelitis, also known as chronic fatigue syndrome—a condition that has been linked to POTS—have accused the National Institutes of Health of making it difficult for researchers to fund studies on the disease and have pointed out flaws behind a widely-publicized study suggesting that therapy and exercise were appropriate treatment.

Most experts readily admit that much more work needs to be done to determine the cause of these disorders.

“I always tell my patients, if you see 10 different POTS doctors in the country, you’re going to get 10 different explanations for its cause,” Chung said.

Burattini, then 24, had been sick since middle school with mysterious symptoms that slowly got worse: digestive issues, debilitating fatigue, seizures. She’d gone from doctor to doctor with few answers, and had begun using a wheelchair regularly. As a last-ditch effort, she visited a neurologist to see if the problem lay in her brain.

“He wrote down the name of a book, called It’s All In Your Head,” she says. “He wanted to put me on antidepressants. After that, I was completely done with Western medicine." The experience spurred Burattini to return to Sponaugle, whom she had seen previously, in hopes that he could help her again.

Six former Sponaugle patients told VICE that they had years of mistreatment from non-alternative doctors. All say they were accused of making up their symptoms by at least one doctor.

It’s unsurprising that Sponaugle would give these patients hope. His clinic’s marketing materials emphasize success stories with difficult cases—and some patients say that he helped them when nobody else could.

“We succeed where others have failed,” his website proclaims. “At Sponaugle Wellness Institute, patients who have been bedridden or in wheelchairs for years have hope that they will be able to walk again.”

Burattini is one of those cases. She heard about the clinic from a fellow Canadian who had had a positive experience. Desperate, her family held a fundraiser to send Burattini to Florida.

“Before I went to Sponaugle I was basically a vegetable,” she said. “I couldn’t even put a sandwich together.”

In a 2015 video posted to Sponaugle’s YouTube channel, footage of Burattini is set over dramatic piano music. She struggles to walk down a hallway, her hand on the wall to balance her; after 16 weeks of treatment, a title card proclaims, she’s shown walking easily outside. The video ends with a photo of Sponaugle and Burattini, his arm around her shoulders as she beams at the camera.

Many patients who arrive at the Sponaugle Wellness Center are willing to do anything to get better—including paying steep prices out-of-pocket. Winter 2019 patient intake forms show a week of treatment starts at $4,000. The clinic does not participate in Medicare/Medicaid or any insurance plan, and insurance companies’ out-of-network plans vary in covering the clinic’s treatments or add-on therapies; one patient told VICE he has fought with his insurance company for years to cover any of the $72,000 he spent for 19 weeks of treatment at the clinic. Sponaugle recommends patients stay in Florida at least three to four months to resolve their illnesses, causing many of them to rack up enormous hotel charges.

“Do you realize most of my patients have been to 60 doctors?” Sponaugle said in a voicemail. “I am their last chance. I don’t promise them I can get them better—I promise them I work day and night, and that’s day and night, to get them better. “

He would have become a Botox doctor, he added, if he “was up for money.”

Dozens of patients have used the crowd-funding site GoFundMe hoping to travel to Florida for conditions ranging from Lyme disease to mold toxicity to ADHD. One active fundraiser for a mother of three young children in Canada is attempting to raise CA $250,000 for her ongoing treatment at Sponaugle’s clinic; an update posted by the family explains that the patient has already spent $250,000 on previous treatments for her chronic Lyme and associated conditions. (Lyme disease stands out among many poorly understood diseases as one that is frequently diagnosed, and over which there is much disagreement: Medical experts define Lyme disease as an infection caused by a tick bite with a telltale rash, cured with antibiotics. But in recent years, patients with debilitating symptoms—which can include extreme exhaustion and weakness, cognitive problems, and seizures—have begun to link their symptoms to what they say is a “chronic” version of the disease. Chronic Lyme comes up frequently in alternative-medicine circles; it is not a diagnosis that’s accepted by the CDC.)

Rachel, a former Sponaugle patient, knows this feeling well. (She asked to be identified by a pseudonym for this story.) After an alternative doctor diagnosed her with Lyme, she googled the disease. The first hit was the Sponaugle Wellness Clinic.

As her home doctor treated her, “I'm watching video after video of Dr. Sponaugle,” she remembered. “I was going to go to the Sponaugle clinic or I was going to die." She managed to get to Florida in 2016, checking in to the clinic around the same time as Anna.

Reviews of the clinic posted online convey similar desperation to what Rachel describes, and a loyalty to Sponaugle—whom patients at the clinic often call “Doc”—and his efforts to get them well.

“I was wheelchair bound and I had slurred speech, seizures, and stomach issues,” reads one 2018 review on Healthgrades.com. “Doc and his staff treated me and believed in my healing even when things seemed hopeless.”

“I thank God for using Dr. Sponaugle in bringing my granddaughter back to health,” another 2015 review reads. “She spent five months at the clinic and is doing great. She is a happy ten year old and is back in school.”

Burattini, whose stay in Tampa preceded Anna’s by about a year, continued to pursue expensive alternative treatments for years after leaving Sponaugle’s clinic. She credits stem cell therapies and aggressive lifestyle changes with her recovery. (The FDA has warned against stem cell therapies used outside of treatment for certain blood disorders, and no research on their efficacy to treat other symptoms has been done despite their growing popularity.) Regardless, she said, she "learned a lot of things" at Sponaugle’s clinic that eventually helped her get better.

“I don't regret going,” she said. “I don't regret the amount of money I spent.”

Hotels a short walk away provide housing for the out-of-town visitors. A receptionist at the Residence Inn off a nearby highway exit said that the hotel works with the clinic to offer special rates for Sponaugle patients, some of whom stay “for months.”

On his website, Sponaugle claims he is “the country’s leading Lyme disease specialist,” and lists nearly 20 other conditions he says he is able to treat, including ADD, Alzheimer’s disease, depression, Parkinson’s disease, chronic pain, and traumatic brain injuries. Before they travel to the clinic, patients are instructed to watch YouTube videos—one of which is more than five hours long—of Sponaugle’s lectures explaining his theories.

In a voicemail, Sponaugle calls the allegations in the lawsuit “80 percent false” and “ridiculous.”

“You’ve got a lot to learn…You better think twice about the embarrassment…you’re going to have,” he said. “You, your editor, and the VICE. I don’t think you want to start your career out with egg on your face cause when the truth comes out—and it will in several months—you’re going to have major regret.”

In response to questions about his lack of formal training and board certification in these diseases, Sponaugle seemed to compare himself to another doctor. “Why don't you call up Brian Fallon and ask him what the hell he’s doing running the [Columbia] Tick-Borne Center when he’s trained as a psychiatrist?” Sponaugle said in a voicemail. (Fallon has published several peer-reviewed studies and received government and university grants to study Lyme.)

Sponaugle didn’t always market himself as a specialist in chronic illnesses. He first gained attention in the mid-2000s for running a clinic that used a controversial technique of putting opioid patients and those struggling with alcoholism under sedation to speed up their detox. The practice has since been disavowed by several insurance providers, while studies have pointed to its low rates of efficacy and high rates of risk.

An investigation into Sponaugle’s work on rapid detox published in The Cleveland Plain-Dealer in 2013 reveals that he was treating between 400 to 500 patients a year for the procedure at the height of his practice, and faced at least four malpractice suits related to his treatments. (These cases have since been settled, dropped, or closed and no wrongdoing was proven.) At the time, he had no public complaints on record with the state of Florida.

"You can learn to do anything regardless of your training," Sponaugle told The Plain-Dealer. "You’ve got a brain, you have a passion and you want to learn." (In a voicemail, Sponaugle said the Plain-Dealer reporter “tried to make out my treatments…[as] snake oil.”)

What Sponaugle lacks in specialized degrees he makes up for in marketing. His website touts his appearances on Dr. Phil, Anderson Cooper, FOX News, ABC News, CBS News and NBC News (many of the clips from his days running the detox clinic). The site also heavily promotes celebrity endorsements, including a recent passage in former reality star Yolanda Hadid’s book about her search for treatment for Lyme disease.

Sponaugle “appears to be a genius whose treatments and ideas are outside the box,” an excerpt from Hadid’s book reads. The excerpt runs under a section labeled “Celebrity Testimonials” on the Center’s website and is posted above a large photo of Sponaugle and Hadid. “I can sense not only his excitement about healing but also his underlying frustration with the world of traditional medicine.”

The Facebook page for the Center brags that it has “4.9 out of 5 stars on 522 reviews”—ostensibly a reference to the dozens of glowing testimonials from sites like Vitals.com. (His Vitals score currently stands at 3.8.) The Center’s website and YouTube channel devote considerable space to advertising “wheelchair success stories” like Burattini’s. (Sponaugle once sued a former colleague for allegedly stealing a patient testimonial involving a “wheelchair success story” and posting it on his own website; the case has been closed.)

Sponaugle’s former patients describe an intense and mercurial man who expressed confidence in his methods and could overwhelm with scientific information. The Center hosts regular lectures where Sponaugle explains the ideas behind his treatment; some patients recall these lectures dragging on for hours, sometimes late into the night. According to one patient’s billing information, the lectures are included as part of the weekly $4,000 base cost for treatment.

This intelligence and confidence drew many patients in after years of suffering, and has created a loyal group of former and current patients who ascribe their healing to his methods.

But for some patients, it caused extra heartbreak when they failed to get well.

Shortly after Anna Burgess’s death, Rachel says she decided to stop treatment. She enlisted the help of other patients at the clinic to get on a last-minute flight back home.

“I believe that if I had stayed I would have died,” she said.

Previous tests done on Anna, the Burgesses’ lawyer said, show she had no pancreatic issues before coming to the clinic. The lawsuit claims Anna began to experience some pancreatic symptoms when she first started Sponaugle’s treatment. Changing some of the contents of her IVs fixed the problems, the lawsuit states, but the symptoms came back when her treatment was again altered in November.

One of the changes made to Anna’s treatment, the lawsuit alleges, was re-introducing “high-dose antibiotics” in her IVs. (Chung, the POTS expert, says an antibiotics course is not an effective treatment for the syndrome.) Multiple former patients say antibiotic use is common in Sponaugle’s clinic; patients describe instances where clinic staff would fill IVs with antibiotics to “kill” infections.

By November 23, 2016, the lawsuit alleges, after three days of a higher antibiotic regimen, Anna began experiencing severe stomach pain. Her parents took her to the emergency room at Mease Countryside Hospital on November 24.

At the hospital, the lawsuit claims, the Burgesses received a call from Sponaugle, who warned them that the physicians at the hospital “had no experience dealing with Anna’s toxin related issues.” The lawsuit claims Sponaugle asked the Burgesses for $1,000 in cash for him to perform emergency treatment that day, which they paid.

Over the next week, according to the lawsuit, Sponaugle would treat Anna once more—again asking for $1,000 in cash—while a nurse administered “outrageous” amounts of drugs through an IV. The lawsuit names 13 different drugs allegedly given to or prescribed to Anna during the last week of her life in various different combinations, including antibiotics like Rocephrin, anticonvulsants like Keppra, and sedatives like Valium and Ativan.

According to medical records submitted to court, as Anna deteriorated, her parents were told that her continuing worsening symptoms were due to the release of toxins in her body. The lawsuit claims Sponaugle ordered no diagnostic tests on Anna.

There’s a “laundry list” of possible causes of pancreatitis in adolescent patients like Anna, said Kenneth Ng, a pediatric gastroenterologist at Johns Hopkins Hospital—including the use of some antibiotics and other medications.

Loading up a pancreatitis patient with multiple medications is a “very bad idea,” Ng said. If a medication is causing an adverse reaction but the patient is taking a slew of different drugs, a physician “will never be able to tease out which one was the straw that broke the camel's back.”

Two days before Anna died, the lawsuit says, she was so weak that her father had to carry her from the car to the clinic. This is when, the suit alleges, Sponaugle ordered the first blood work to be done on Anna.

In medical notes submitted to court by the plaintiffs, Sponaugle writes that he advised the Burgesses that while he would “prefer to send Anna to an emergency room,” the ER “would not comprehend the severity” of Anna’s condition, and that ER doctors would not use an “all natural detoxifying agent” in treating her and would worsen her condition. “Anna’s parents agreed stating that Anna had already been misdiagnosed and mistreated in multiple hospital settings,” the notes read.

Anna was admitted to Mease Countryside Hospital on November 29, 2016, after her parents called 911 when she became unconscious in their rental apartment. She died the same day. Her official cause of death, the lawsuit says, was necrotizing pancreatitis. “Knock on wood, but I have never had a patient die from pancreatitis,” Ng said.

In legal filings, Sponaugle disputes the Burgesses’ allegations and sought to dismiss their case on the grounds that they’d signed an arbitration agreement before coming to the clinic.

Shortly after Anna’s death, Sponaugle and a nurse recorded a conversation with two of Anna’s relatives where they discussed what had happened; a transcript of the conversation was submitted to court by the plaintiffs last year. In the transcript, Sponaugle vigorously defends his treatments and practices, instead blaming medical error at the hospital for Anna’s death. (The hospital, Mease Countryside, declined to comment on the accusations.)

In an email sent to this reporter in August of last year, Sponaugle wrote that his lawyer wouldn’t allow him to discuss a case in the middle of litigation, but wrote at length about his medical theories—the scientific facts of which, he asserted, would come to light “as the case moves forward.”

Sponaugle has since switched representation; his newer lawyer also noted in an email to VICE that “publishing [a] story at this time would present a very biased and unfair picture of Dr. Sponaugle, the Wellness Center and the case.”

The transcript of the conversation with Anna’s relatives also shows that Sponaugle continued to have confidence in his methods—even after Anna’s death.

“Here's the deal,” Sponaugle says at the start of the filed transcript. “I did nothing wrong except in the eyes of everybody else in the world.”

In February 2018, the Florida Department of Health filed an administrative complaint—the first formal and public step in flagging a potential problem doctor—against Sponaugle. The complaint alleges that Sponaugle failed to provide the appropriate standard of care for a patient with “Lyme disease-like symptoms” in 2014.

There’s no mention of Anna Burgess on the state site. The Burgess’s lawyer said the Department of Health has been aware of Anna’s death since the lawsuit was filed in the fall of 2017, and believes that this should have triggered another investigation.

Two other patients confirmed to VICE that their complaints about Sponaugle were filed with the Department of Health for at least a year (one has since been dismissed). Rachel filed a formal complaint about her treatment in the spring of 2018; the case is still pending, as far as she knows.

Keeping complaints confidential during investigations is standard practice for health departments and medical boards, designed to protect doctors from false accusations. But Florida state laws dictate that the Department of Health must decide whether or not to charge a doctor within six months of a complaint being filed, and must expedite cases that take longer than a year.

A 2017 South Florida Sun-Sentinel investigation found that the Department of Health often takes more than twice as long as its standards dictate to file charges against doctors. The investigation also found that doctor prosecutions take, on average, two years. A Department of Health spokesperson did not respond to questions about the status of complaints progressing against Sponaugle.

For Rachel, waiting for the state to act on her behalf, and on Anna’s, is excruciating. It’s frustrating, she said, knowing Sponaugle is continuing to recruit new patients.

“I feel like physicians have no accountability unless someone becomes severely disabled or dies,” she said.

State medical boards across the country often move slowly to discipline doctors. Usually, action can be helped by insurance companies or hospitals looking to protect themselves against a dangerous doctor.

But for patients who pay cash for unproven therapies, these incentives don’t exist. And malpractice lawyers are often reluctant to take on cases where a clear financial win isn’t guaranteed.

Bellamy, of the Campaign for Science-Based Healthcare, explained that while Florida has a statute regulating the use of alternative medicine, which includes a requirement that doctors properly inform patients of their “education, experience, and credentials,” it is rarely, if ever, enforced.

There is no record of Sponaugle being disciplined by the state for violating this statute and the statute is not mentioned in the Burgesses’ lawsuit. But Anna’s case proves how difficult enforcing the spirit of this statute is in the age of online marketing. “The assertions in the Sponaugle Wellness Institute’s marketing referencing Dr. Sponaugle’s cutting edge standard of care proprietary treatments played a part in the Burgesses’ entrusting the care of their daughter to Dr. Sponaugle,” the suit claims.

And the state medical board, Bellamy said, has also devoted few resources to educating and notifying the public about quack doctors.

“I think Florida does a really poor job of protecting people proactively,” she said.

The rise of misinformation on the internet has the potential to create a patient population with “zero discernment” for the information they are receiving—who may also begin to distrust their doctors, said Jon Tilburt, an internist at the Mayo Clinic with a focus in integrative medicine and biomedical ethics.

“I don't think medicine has really ever had to operate in a truly postmodern dynamic,” he said.

But Tilburt also noted that patients with chronic illnesses and mysterious symptoms—especially those, like Burattini, who say they resolved their issues with alternative treatments—also demonstrate how doctors may need to exercise more “humility” in handling puzzling cases.

“Medicine is not set up well to address these kinds of patients,” Tilburt, who regularly sees patients with POTS, said. “What are the basic things that we can try, not because we have a magic bullet and because we're all-knowing, but because none of us is actually hitting this out of the park?”

Rachel said she still deals every day with brain fog and fatigue. She can’t stop thinking about what happened to Anna, the beautiful young woman she knew for just a few months.

“I’ve got survivor’s guilt,” she said. “I feel terrible every single day that I can’t stop Sponaugle from practicing in that clinic. It’s hard to sleep at night.”

This piece was produced with support from the Toni Stabile Center for Investigative Journalism at Columbia University.

Follow Molly Taft on Twitter.