COVID-19 fears lead to Lemierre syndrome diagnosis

After she fell seriously ill, Lindsay Mase and her mom thought she had COVID-19. Instead she’d contracted a very rare bacterial infection.
July 13th, 2020

In the topsy-turvy world beset by the novel coronavirus, it’s possible for good news to be bad and bad news to be good. Just ask Lindsay Mase.

In late March, Mase, 20, of Colorado Springs, was wrapping up her sophomore year as a biology major at Pepperdine University in Malibu, California, with online work. Two weeks before, the school had sent her and her classmates home early to protect them from the SARS-CoV-2 virus, which causes COVID-19. She felt fine for a couple of weeks, but on the last day of the month, Lindsay got a fever and sore throat. She said she didn’t think much of it at the time, but the fever held on stubbornly, at one point reaching a dangerously high 106.

 Lindsay Mace, right, with mom Lisa before Lindsay’s recent health ordeal, which she thought might be COVID-19 but was actually Lemierre syndrome.. Photo courtesy of Lindsay and Lisa Mase.
Lindsay Mace, right, with mom Lisa before Lindsay’s recent health ordeal, which she thought might be COVID-19 but was actually Lemierre syndrome. Photo courtesy of Lindsay and Lisa Mase.

Lindsay and her mom, Lisa, visited their primary care physician. Tests for influenza, strep and mononucleosis were negative, but the symptoms hung on, then worsened. Lindsay endured periodic bouts of rigor: uncontrollable shivering, accompanied by temperature spikes. When she tried to take a sip of water, her teeth chattered against the bottle.

“Weird and scary,” is how Lisa described the shaking episodes, all of which went on for 25 minutes or more.

“I’d put my hand on her head and it felt like it was vibrating,” she recalled.

No COVID-19, but plenty of worries

In these relatively early days of the COVID-19 pandemic, tests were in short supply. For several days, Lindsay nursed the shivering attacks with lukewarm baths. But on Saturday, April 4, she could barely move. When her blood oxygen level dropped to 81% — greater than 90% is normal – she went to the emergency room at UCHealth Memorial Hospital North. Blood tests revealed plenty of worrisome signs: her platelet, white blood cell and hemoglobin counts were all very low. Providers admitted her to the hospital.

Lisa’s natural thought was that Lindsay had fallen prey to the virus everyone feared.

“In my mind, I was sure she had COVID,” she said. “I couldn’t believe how bad it was making her feel and so scared that I was going to get it and pass it on to others.”

The good news: a quick COVID-19 test and a second one the hospital sent to Denver both came back negative for the virus. The bad news: Lindsay wasn’t getting any better. None of her symptoms had improved.

“The physicians could tell that she was fighting an infection, but couldn’t tell where it was coming from,” Lisa said.

“I was very confused and lost hope at that point because I thought, ‘What can I possibly have?’” Lindsay said. With her condition still undiagnosed, she was also in isolation, frightened and alone. Her weakened condition made her a fall risk, so she had to stay in bed, reliant on her nurses for everything: ice, blankets, water, and getting to the bathroom.

Isolated but not alone

The difficult situation had a bright side, though. Lindsay gained a strong appreciation for the nurses, CNAs and other front-line health care providers who cared for her. There was Tonya, the nurse who held her hand and spoke soothingly to help keep her still during a CT scan while Lindsay struggled to breathe without coughing or shivering. There was Amy, the CNA who helped her hobble to the blessed relief of a shower. There was Kim, the night nurse who kept her warm and comfortable through long, lonely nights.

For a scary time in April, Lindsay’s illness, which she thought might be COVID-19 but was actually Lemierre syndrome, took her away from the outdoors and confined her to a hospital room. Photo courtesy of Lindsay and Lisa Mase.
For a scary time in April, Lindsay’s illness, which she thought might be COVID-19 but was actually Lemierre syndrome, took her away from the outdoors and confined her to a hospital room. Photo courtesy of Lindsay and Lisa Mase.

“Without them, I don’t know what I would have done,” Lindsay said. “They made a world of difference.”

Lisa, unable to be by Lindsay’s side, also relied heavily on the nurses for information and support. She often called very early, 4:30 or 5 a.m., to catch them before shift change.

“For long periods, I couldn’t talk with Lindsay,” Lisa recalled. “The nurses were so gracious and informative.” The nurses, in turn, would let Lindsay know that Lisa had called to check up on her and to stay connected.

“It was like I was there without being there,” Lisa said.

She added that she also got a lot of support from an electronic source: My Health Connection, the UCHealth patient portal. A longtime friend, Crista Muchmore, corporate relations and communications officer for the Memorial Hospital Foundation, helped get Lisa set up the application on her phone, which gave her quick access to Lindsay’s test results – concrete information she could grasp during a time of great anxiety and uncertainty.

But even with all this help and support, Lindsay and Lisa still faced the great, unanswered question. What in the world was wrong with her?

Mystery solved

Providers at the hospital had put Lindsay on an antibiotic. But for help solving the medical puzzle, hospital medicine specialist Dr. Tiffany Cartner contacted Dr. Thomas Hackenberg, an infectious disease clinical consultant who works frequently with Memorial Hospital.

After being briefed on the case, Hackenberg said he too was initially stumped. Lindsay hadn’t tested positive for COVID-19, and the CT scans of her neck hadn’t revealed why her throat was so painfully sore.

“I remember specifically driving up to the hospital and thinking, ‘This is the weirdest thing. What the heck could this be?’,” Hackenberg recalled.

A surprising clue came when Hackenberg talked with the microbiology lab about the results of cultures grown from Lindsay’s blood draws. The tests showed Lindsay’s blood was riddled with gram-negative rod-shaped bacteria – germs that cause a variety of infections and are resistant to many antibiotics — that had not yet been identified.

Seeing that, Hackenberg suggested the organisms might be causing a condition called Lemierre syndrome that mainly strikes young males. It happens when colonies of bacteria, typically in the throat, ears, or mouth, invade tissues in the neck and form an infected blood clot in the jugular vein – the vessel that transports blood away from the neck. Left untreated, pieces of the clot can break away and journey through the bloodstream to the lungs and other organs.

Hackenberg added another antibiotic that he thought might attack the bacteria. The following day the germ was confirmed to be fusobacterium, which is the organism most frequently isolated in Lemierre syndrome.

Lemierre syndrome: an elusive foe

That providers at Memorial Hospital North couldn’t initially diagnose the problem isn’t surprising. Cases of Lemierre syndrome are very rare: not quite one in a million, but close. Hackenberg said in his 24-year career, he’s averaged seeing perhaps one or two cases every few years. In addition, Lindsay’s CT scans didn’t show evidence of blood clots or blockages that would have been a strong warning sign.

“It’s hard to diagnose right away,” Hackenberg said. Many patients with Lemierre syndrome can languish for long periods in intensive care with debilitating lung problems that lead to death. In Lindsay’s case, her low white blood cell count diminished her ability to fight the infection, while her low platelet count put her at risk of bleeding complications.

Dr. Thomas Hackenberg, who diagnosed the bacterial infection that cased Lemierre syndrome in his patient who thought she had COVID-19 symptoms.
Infectious disease specialist Dr. Thomas Hackenberg diagnosed the bacterial infection that caused Lemierre syndrome in Lindsay. Photo courtesy of Thomas Hackenberg.

“She could have died from the infection itself,” Hackenberg said.

Antibiotics turn the tide

Fortunately, having caught the infection relatively early, Hackenberg was able to put Lindsay on the road to recovery with an antibiotic regimen. Her quick response to the medications surprised him.

“She got better fairly quickly,” Hackenberg said. “It was pretty miraculous, actually. Normally we catch it a bit later in the course of illness and patients don’t recover as quickly as she did. We were able to send her home earlier than anyone I’d ever seen.”

Nonetheless, Hackenberg is at pains to emphasize that he didn’t swoop in with a heroic rescue of Lindsay.

“In infectious disease, we have a lot of ideas, but we’re used to not knowing what the diagnosis is,” he said. “Sometimes we might get lucky, but we’re beginners every day. We have to ask all the basic questions from the very beginning and not bias ourselves to what has been done already or what our first thoughts are.”

Balancing hope and uncertainty

That uncertainty means striking a delicate balance between giving frightened patients and their loved ones as much information and reassurance as possible about diagnosing and treating an illness while making it clear that new data could mean a different strategy, Hackenberg said.

“There sometimes is an expectation that we will have a diagnosis the minute we step into the hospital, and that can create greater fear and anxiety,” Hackenberg said. “We must have a working plan but that can change. We treat aggressively but we also have to have enough humility to change a diagnosis and communicate that to the patient because it’s all so scary for them.”

Hackenberg said that in Lindsay’s case he “just happened upon the right thing,” but Lisa had a different take.

“It was an absolute miracle he figured it out,” she said, and praised him for spending time on the phone with her and Lindsay’s father to answer all their questions about the rare condition.

“He had great bedside manner,” Lisa said.

The slow road back to health

Lindsay was simply relieved to have the mystery solved. The day following Hackenberg’s diagnosis, she could finally stand on her own two feet without help. “That felt so nice,” she said.

One day later, she was on her way home, less than a week after arriving at the hospital desperately ill. She needed oxygen for a few days but slowly recovered while taking her antibiotics and said she “feels back to normal, pretty much.”

There were a couple of bumps in the road. Lindsay initially had some trouble getting back to her schoolwork and complained of “brain fog,” Lisa said. Her head hurt, she had trouble concentrating and she worried that she’d lost some brain cells while she was sick. Her heart rate was higher than normal for about a week. She also felt a recurrence of some infection symptoms, which Hackenberg addressed by extending her antibiotics to clear out any remaining tiny clots.

“We thought we would give her a little more time [on the antibiotics] as long as she’s tolerating the therapy well,” Hackenberg said.

These problems are behind her, and Hackenberg considers a recurrence of the infection very unlikely. Lindsay can now look forward to a future that is once again bright. She will return to Pepperdine as a junior in August for a truncated term that will end at Thanksgiving. Her medical ordeal added to her education in a different way.

“I learned how vital the health care industry really is,” she said. “Without the hospital, I would not have gotten better. I also learned how helpful small gestures are when a person is really sick. And I never want to get that sick again.”

 

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About the author

Tyler Smith has been a health care writer, with a focus on hospitals, since 1996. He served as a writer and editor for the Marketing and Communications team at University of Colorado Hospital and UCHealth from 2007 to 2017. More recently, he has reported for and contributed stories to the University of Colorado School of Medicine, the Colorado School of Public Health and the Colorado Bioscience Association.