In it for the Long Haul

After finally recovering from COVID-19 and feeling well enough to play golf again, Billy Mandarino woke one morning to find his hands, feet, and face completely numb. He is now re-learning how to walk. Mandarino is one of the more than one hundred thousand cases nationwide with what doctors are calling Long Haulers Syndrome, or Post-Acute COVID Syndrome, which is quickly becoming one of the biggest health issues in the country

‘Long Haulers Syndrome’ Slamming County: Fierce New Symptoms Striking ‘Recovered’ COVID-19 Victims

On January 22, Billy Mandarino, a real estate adviser for Engel & Volkers in Santa Barbara, was excited to play golf after recovering from a bad bout with COVID-19. He looked forward to being healthy again. What he didn’t know was his nightmare with the disease was just beginning.

The morning after his golf round, he woke up to find his hands, feet, and face had gone totally numb. He was told by a neurologist to take ibuprofen, but his symptoms worsened quickly over the next two days. “I had a terrible pain in my hips, my tongue and mouth were on fire, and my feet were so numb I was walking like a drunken sailor. My wife, Desa, had to help carry me to the car so I could get to the emergency room.”

Although doctors were puzzled at first, Mandarino was ultimately diagnosed with what many medical experts now fear is a second pandemic that is already spreading across the county, and the country. Called “Long Haulers Syndrome” among many other names, it is striking those who have already suffered, and seemingly recovered, from the COVID-19 virus. 

“We are being slammed with patients with these symptoms – which are different than the ones people have when they first get COVID,” said Dr. Lynn Fitzgibbons, Chair of the Infectious Disease Department at Cottage Hospital. “In the near future, we should expect to see hundreds, if not thousands, of patients in Santa Barbara County suffering from these long-term effects.”

More than one hundred thousand cases have been reported nationwide, and the number of unreported cases could be far higher. Surveys conducted by patient groups indicated that 50 percent to 80 percent of patients continue to have symptoms three months after the onset of COVID-19 – even after the virus has left their body, according to a report from the Harvard University Medical School. To date, there are an estimated 30,000 cases of COVID-19 in Santa Barbara County, nearly 30 million cases in the U.S., and 106 million cases reported worldwide.

“So far we’ve seen about two-thirds of the patients who suffered initial, acute COVID attacks later come down with these other, often worse, symptoms, which can last for months, if not for a lifetime,” said Dr. Christian Sandrock, Director of Critical Care at the UC Davis clinic, which was formed to care for those with these recurrent symptoms. “We call it the Post-Acute COVID Syndrome (PACS),” he said. “It’s quickly become one of the biggest health issues in the country.” 

Symptoms are varied, but most often include cognitive breakdowns called “brain fog,” difficulty breathing, leg pain, numbness, tachycardia episodes that can send a patient’s heart suddenly racing to 135 beats a minute, constant fatigue, depression, headaches, chest pain, migraines, disrupted sleep patterns, lung and heart scarring, and many other problems. At its worst, PACS has caused death by shutting down breathing pathways, and causing strokes and heart attacks. “It’s too early to tell how this will affect Santa Barbara County in terms of heart issues,” said Sansum’s Dr. Michael Shenoda, one of the leading cardiologists in the area. “We’ve seen a lot of pericarditis/myocarditis (inflammation of the lining of the heart and heart muscle), but no post COVID heart failures.”

A Critical Point in the Pandemic

One sobering fact about PACS is, unlike the initial COVID symptoms, younger patients are highly vulnerable. “We’re seeing it in younger and middle-aged people who had only light symptoms when they initially caught COVID, but who are now suffering a great deal,” said Fitzgibbons. “We don’t know yet how long these symptoms will last. Some patients have been struggling for months and are still struggling, but others seem to be getting better. We’re seeing a range of recovery – there just isn’t that much data yet.”

Major issues still face the medical community and those who are falling prey to PACS. The rapid spread of PACS, for whatever reason, has been slow to penetrate the nation’s media and some doctors are still relatively unaware of it. Part of the problem is the symptoms are varied and present themselves differently. Many patients are treated for obvious symptoms, such as depression, fatigue, or high blood pressure and sent home, only to suffer tremendously without knowing why.

“I think this is a critical point,” said Fitzgibbons. “We all have to come to the realization this is not a psychological problem – this is not a made-up ailment in people’s heads. It is a real physical problem that can attack the brain, lungs, heart, and other organs in long-term ways.”

For many patients, not knowing what is wrong with them, and suffering sometimes debilitating fatigue and pain, it can create what some described as, “hell on earth.” Les Teel, an ex-Navy Seal, has suffered for months from central nervous system and heart issues. “The fatigue level is just horrible,” he said. “This causes so many problems in so many parts of your body. Imagine a one-hundred-car pileup in your body where everything keeps crashing into itself.”

With so many symptoms presenting in different ways, trying to deal with PACS has been a challenge. Mandarino had to undergo hours of MRI’s – especially excruciating because he is claustrophobic – and many other tests, including a spinal tap, before he was diagnosed with PACS, with part of it being a rare disorder called Guillain-Barré, which itself slams the body with multiple symptoms. Originally admitted to Cottage General, he was moved to the hospital’s rehabilitation center eight days later. He is still there.

“Post COVID symptoms can be quite severe,” said Dr. Greg Vanichkachorn, a specialist at the Mayo Clinic. “The fatigue associated is not a normal fatigue – this is profound. People often say they have to rest for hours after taking their pet for a walk of only a block. What we have to realize is this post COVID syndrome is not rare – patients, providers, and employers should all be expecting to see it prominently in their communities.”

The Importance of Vaccines

Doctors are quick to point out the immergence of PACS greatly underscores the importance of the COVID vaccines. “Many people have been thinking about COVID as a bad flu, now we know it has the potential to cause terrible long-term problems,” said UC Davis’ Sandrock. We are encouraging everyone to get vaccinated – and this is true for people who have already had COVID. We believe the vaccine will prevent or lessen the chances that patients will suffer from PACS.”

Right now, there is no cure for PACS. Doctors can treat many of the symptoms, like lowering blood pressure, but the strong autoimmune element of PACS makes its exact cause elusive. 

Worldwide, PACS is emerging as a problem no one expected or wanted. An initial study done in Wuhan, China found that three-quarters of COVID patients suffered from PACS six months after being released from the hospital for initial COVID treatment. In Paris, physicians reported seeing hundreds of patients with PACS monthly, with an average age around 40 years old, according to a report in the Journal of the American Medical Association. A study in Italy showed that 125 out of 143 Italian patients were suffering from PACS two months after their first COVID symptoms emerged. In England, where it is known as “Long COVID,” say some studies show up to 50 percent of COVID patients have suffered these continued symptoms for months and many are still suffering.

Funding for immediate research into possible medicines and cures is greatly needed. Governments are already beginning to gear up for what could be an onslaught of disability – short and long-term – claims due to PACS. 

Physically and psychologically, the symptoms can be devastating. For Mandarino, who is also the author of a self-help inspirational book, The Now-ist, the battle with the disease is still underway. He is hoping to recover in time to conduct a seminar in Santa Barbara, based on his book, in May. Overcoming unforeseen challenges in life will definitely be part of his presentation.

“I am having to learn to walk again,” said Mandarino, who can only go short distances with the aid of a walker. “It’s a slow process. The severity of the symptoms come and go. Luckily, I have great doctors, but I have had to rely on every positive concept I know. This has included some of the darkest moments of my life. But I have to trust we will be able to conquer this in the end.”