Editor’s Note: Find more information about long-term COVID in Medscape’s Long COVID Resource Center.
September 22, 2022 – Entrepreneur Maya McNulty, 49, was one of the first victims of the COVID-19 pandemic. The businesswoman from Schenectady, NY, spent 2 months in the hospital after contracting the illness in March 2020. In September, she was diagnosed with lung COVID.
“Even a simple task like unloading the dishwasher became a big challenge,” she says.
Over the next few months, McNulty saw a range of specialists, including neurologists, pulmonologists, and cardiologists. She received physical and respiratory therapy for months to regain her strength and lung function. While many of the doctors she saw were sympathetic to what she was going through, not all of them were.
“I saw a neurologist tell me straight to my face that she didn’t believe in COVID for a long time,” she recalls. “It was especially astonishing because the hospital they were attached to had a long COVID clinic.”
McNulty began connecting with other patients with long-term COVID through a support group she founded on the Clubhouse social media app in late 2020. They exchanged ideas and stories about what had helped each other, leading her to try a plant-based diet, Chinese medicines, and vitamin C supplements the following year, among other treatments.
She also acted on unscientific reports she found online and did her own research, leading her to discover claims that some asthmatics with chronic coughs responded well to halotherapy, or dry salt therapy, in which patients inhale microparticles of salt into their lungs to reduce inflammation. widen airways and thin mucus. She’s been doing this procedure for over a year at a clinic near her home, attributing it to her chronic cough, especially as she’s recovering from her second bout of COVID-19.
McNulty understands that, but says many people who have been living with COVID for a long time turn to these treatments out of desperation.
“When it comes to this condition, we kind of have to be our own advocates. People are so desperate and so hounded by doctors who don’t believe in their symptoms that they are playing Russian roulette with their bodies,” she says. “Most just want some hope and a way to relieve pain.”
Across the country, 16 million Americans have long had COVID, according to Brookings Institution’s analysis of a 2022 Census Bureau report. The report also estimated that up to a quarter of them have such debilitating symptoms that they are no longer able to… work. While long-term COVID centers may offer therapies to relieve symptoms, “there are no evidence-based established treatments for long-term COVID,” said Andrew Schamess, MD, a professor of internal medicine at Ohio State Wexner Medical Center, who Post-COVID recovery program. “You can’t blame patients for looking for alternative remedies to help them. Unfortunately, there are also many people who want to make money and sell unproven and disproven therapies.”
Snorting snake oil
With little evidence-based treatments for long-term COVID, patients with debilitating symptoms may be tempted by unproven options. One that has received a lot of attention is hyperbaric oxygen. This therapy has traditionally been used to treat divers who suffer from decompression sickness or the bends. It is also touted by some clinics as an effective treatment for long-term COVID.
A very small trial involving 73 patients with long-term COVID, published in July in the journal Scientific Reports, found that those treated in a high-pressure oxygen system 5 days a week for 2 months showed improvements in brain fog, pain, energy, sleep, anxiety and depression, compared to similar patients who received sham treatments. But larger studies are needed to show how well it works, Schamess notes.
“It’s very expensive — about $120 per session — and there’s just no evidence to support its use,” he says.
In addition, the therapy itself carries risks, such as ear and sinus pain, middle ear injury, temporary vision changes and, very rarely, lung collapse, according to the FDA.
One “particularly troubling” treatment being offered, says Kathleen Bell, MD, chair of the Department of Physical Medicine and Rehabilitation at the University of Texas Southwestern Medical Center, is stem cell therapy. This therapy is still in its infancy, but is being marketed by some clinics as a way to prevent COVID-19 and also to treat long-term symptoms.
The FDA has advised that no products are approved for the treatment of long-term COVID and does not recommend their use except in a clinical trial.
“There’s absolutely no regulation — you don’t know what you’re getting, and there’s no research to suggest this therapy even works,” Bell says. It’s also priceless – a company based in the Cayman Islands advertises the treatment for as much as $25,000.
Patients with long-term COVID travel as far as Cyprus, Germany and Switzerland for a procedure known as blood washing, in which large needles are inserted into veins to filter blood and remove lipids and inflammatory proteins, the British medical journal reported in July. Some patients are also prescribed blood thinners to clear microscopic blood clots that can contribute to long-term COVID. But this treatment is also expensive, with many people paying $10,000-$15,000 out of pocket, and there’s no published evidence to suggest it works, according to theBMJ.
It can be particularly difficult to distinguish what may work and what is unproven, because many primary care providers themselves are unfamiliar with even traditional long-term COVID treatments, Bell says. She advises patients to ask the following questions:
- What published research is there to support these claims?
- How long should I expect this treatment before I see an improvement?
- What are the possible side effects?
- Will the medical provider recommending treatment work with your current medical team to monitor progress?
“If you can’t get answers to these questions, take a step back,” Bell says.
Sort by supplements
Yufang Lin, MD, an integrative specialist at the Cleveland Clinic, says many patients with long-term COVID come into her office with bags of supplements.
“There is no data on them and in large quantities they can even be harmful,” she says.
Instead, she works closely with the Cleveland Clinic’s long-standing COVID center to thoroughly examine each patient, often screening for certain nutritional deficiencies.
“Anecdotally, we see many patients with long-term COVID who are deficient in these vitamins and minerals,” Lin says. “If someone is low, we will suggest the appropriate supplement. Otherwise, we will work with them to make some dietary changes.”
It usually involves a plant-based, anti-inflammatory diet like the Mediterranean diet, which is rich in fruits, vegetables, whole grains, nuts, fatty fish, and healthy fats like olive oil and avocados.
Other supplements some doctors recommend for patients with long-term COVID are intended to treat inflammation, Bell says, although there’s no good evidence that they work. One of these is the antioxidant coenzyme Q10.
But one small preprint study published in The Lancet last August, 121 patients with long-term COVID who took 500 milligrams of coenzyme Q10 per day for 6 weeks saw no difference in recovery than those who took a placebo. Because the study is still a preprint, it is not peer-reviewed.
Another is probiotics. A small 2021 study published in the journal Diagnosis and treatment of infectious diseases found that a mixture of five lactobacillus probiotics, along with a prebiotic called inulin, taken for 30 days helped with long-term COVID symptoms such as coughing and fatigue. But larger studies need to be done to support its use.
One that may hold more promise is omega-3 fatty acids. Like many supplements, these can help with long-term COVID by reducing inflammation, says Steven Flanagan, MD, a rehabilitation medicine specialist at NYU Langone in New York who works with long-term COVID patients. Researchers at the Mount Sinai School of Medicine in New York are investigate whether a supplement may help patients who have lost their sense of taste or smell after infection, but the results are not yet available.
One of the few alternatives that has been shown to help patients are mindfulness-based therapies – in particular, mindfulness-based forms of exercise such as tai chi and qi gong can be helpful, as they combine gentle training with stress reduction.
“Both contain meditation, which not only helps relieve some of the anxiety associated with long-term COVID, but allows patients to redirect their thinking process so they can better cope with the symptoms,” Flanagan says.
A study from 2022 published in BMJ Open found that these two activities reduced inflammatory markers and improved respiratory muscle strength and function in patients recovering from COVID-19.
“I recommend these activities to all my long-term COVID patients because it’s cheap and easy to find classes to do at home or in their community,” he says. “Even if it doesn’t improve their long-term COVID symptoms, it has other benefits, such as increased strength and flexibility that can improve their overall health.”