Some commentators believe the so-called hybrid immunity of vaccines and infections protects people. According to them, Salvatore Mattera did everything right. He's realized the hard way that multilayered measures are essential to protect against COVID-19 and Long COVID.
In the second in a series of personal perspectives, the John Snow Project talks to Salvatore Mattera, a young professional based in California, who developed Long COVID after his third SARS-CoV-2 infection.
Salvatore was a successful, active early-thirties professional.
“Prior to my Long COVID, I worked out five or six days a week. I even had an expensive personal trainer. I always had a lot of energy and was a high performer in every aspect of my life. As an example: A few weeks before my second Covid infection, I was at Burning Man. I would wake up, bike several miles across the desert, dance in 120-degree heat, go to bed in a tent, sleep for 4 hours, and get up and do it again the next day for a week straight. I thought nothing of it and felt fine the entire time. Though I admit it wasn't a healthy habit, I'd regularly drink four or five cups of coffee or energy drinks a day, and maybe two to five alcoholic drinks a few nights a week. My consumption of both was pretty average for a guy my age, but what is notable is that Long COVID has given me complete alcohol and caffeine intolerance.”
Salvatore was Covid cautious and followed public health advice from the outset, including with regard to the vaccines.
“I completed my first vaccine series in May 2021 with two doses of Pfizer. Believing I was protected, I lived normally and was infected in September 2021. I had a known exposure and lost my sense of smell and taste. I was sick for about a day and went to bed early that night, but I didn’t even take time off work. I went back to my remote duties the next day and felt fine after a few days. I had my third Pfizer vaccine in March 2022, and was infected for a second time in September 2022 and for a third time in January 2023.”
Salvatore wasn’t initially concerned about his subsequent infections.
“I tested positive on a Cue at-home test for the second and third infections. Both infections were even milder than the first, maybe because I took Paxlovid. Within a week of the second infection, I developed heart palpitations, which were not initially linked to Long COVID. After the third infection, I began to develop many more Long COVID symptoms, and was diagnosed with the condition.”
Looking back, Salvatore had experienced persistent symptoms since his first infection, and developed new ones with each subsequent infection.
“I was aware of Long COVID since I had persistent loss of taste and smell going back to my first infection, but I never really considered it to be Long COVID, as it did not have a major effect on my life. The third infection is really what tipped me into Long COVID. Since then, I've had intermittent chest pain, heart palpitations, various neurological issues (face numbness, buzzing in the feet), joint pain, anxiety, issues with my vision, fatigue, complete alcohol and caffeine intolerance. I alternate between good weeks and bad weeks, with the bad weeks slowly becoming less severe. Some symptoms have totally resolved, while new ones occasionally emerge (the neurological symptoms did not arise until 3-4 months after my third infection). Although I have been able to keep my job and parent my daughter, this year has been one of the worst of my life. Where previously I was having fun on the weekends, for the last 8 months, I have basically spent my weekends laying on the couch and trying to recover. This year, I had two vacations planned, but cancelled them both because of how bad I've felt. My wife and I have delayed having another child because of my health. Even if I do recover fully, I have read so many stories of people relapsing back into Long COVID, that I am afraid I will never be fully healthy. For that reason, we may not have any more children because of Long COVID.”
Salvatore emailed Dr Bob Wachter, after the noted physician said booster vaccinations or infections will protect people from Long COVID. Dr Wachter posted on Twitter that boosters or infections “will protect you from severe infection & Long Covid – I give them 1 year of credit in this regard.”
Salvatore asked Dr Wachter to delete his erroneous tweet, saying, “Just reading it has caused me immense anguish knowing that someone might believe you and wind up in a similar situation [to me]. I hope you can appreciate how someone could reasonably hold you responsible for their Long COVID in the future.”
We asked Salvatore how the medical profession has responded to his Long COVID.
“Most doctors have believed me, but none have offered any substantive treatments. For example, my cardiologist at UCSF ended our last appointment by encouraging me to take CBD oil, telling me he hoped I would get better. The CBD oil seems to help a little bit, but I haven't gotten better despite his hopes. An ER doctor I saw after my face went numb was kind and caring, but described me and people like me as a "science experiment" that no one really knows how to help. Primary Care Providers have been hit or miss. Once I brought in a document with my list of symptoms to a new Primary Care Provider. He ignored it, then suggested the only explanation was that I was suffering from HIV. I have no risk factors for HIV. Once when I was feeling really bad, I visited urgent care. When I told the doctor that I had caught Covid three times, he implied that it was my fault, and told me not to catch Covid again, as if I hadn’t tried, or could somehow wave a magic wand to prevent it in the future.”
Salvatore isn’t alone in his experiences of Long COVID but wishes more people would pay attention to the risks.
“My friends and family have been broadly supportive. It might be because I have several family members and friends who also have Long COVID, or who had it in the past and recovered. I don't think my experience has actually influenced anyone else's behavior, except my wife, who masks diligently because of me. When I talk about Long COVID, people who were already behaving in a COVID-cautious manner see it as validating, while those who weren't react with a sort of hopeless indifference. Long COVID isn’t rare. It affects many people who catch Covid even if they caught Covid before. Even if they are young and healthy. Even if they are vaccinated or not vaccinated.”
Salvatore has a message for people who don’t think about the risks of Long COVID.
“You probably won't develop Long COVID after your Covid infection, but there's a good chance that you might. The only way to avoid Long COVID is to avoid catching Covid. The vaccines and Paxlovid seem to help but aren't a panacea. If you get Long COVID, it will probably be somewhat mild, but it also could be so severe that it will derail your life entirely. Doctors will not be able to help you -- there are no cures or even approved treatments.”
Salvatore is concerned about the failure of governments to respond to the danger of Long COVID.
“Government officials that downplay or ignore the risk of Long COVID are directly responsible for the suffering of millions of people. Even if there's nothing to be done about it, at least telling people the truth would give them a chance to make a decision about the amount of risk they're willing to take. Be honest with the public about Long COVID: stop downplaying it.”
He is also concerned about the systemic risk Long COVID poses to social and economic wellbeing.
“Long COVID is the biggest, most mispriced risk facing the United States. Based on the latest studies, it's entirely possible that as many as one-third of Americans could be struggling with Long COVID in just a few years. Many of these people may be too sick to work, which poses a huge risk for the economy, and may already be manifesting in the form of the persistent labor shortage. As the number of people with Long COVID grows, health care and disability systems will come under even more strain. Long COVID should be treated as seriously as the initial COVID outbreak.”
Salvatore’s caution is very much in line with the latest advice from some public health agencies around the world, who note that the only way to avoid Long COVID is to avoid COVID-19 and that anyone can be vulnerable to Long COVID. You can find a summary of the latest international advice here, detailing the agencies and governments that recommend the use of a vaccines-plus strategy, including masks and ventilation, to reduce the risks of long term complications from COVID-19.
Notable figures such as Dr Wachter should be very careful about giving advice that contradicts official government and public health agencies. As Salvatore rightly says, people can legitimately feel badly misled if they rely on advice that tells them they are safe when in fact they aren’t. Someone like Salvatore, who did everything expected of him in terms of getting vaccinated, now faces a long road to recovery because public health agencies and media personalities failed to communicate sufficiently well or sufficiently loudly the ongoing risks that are associated with any COVID-19 infection.