Desperate Long COVID Patients Turn to Unproven Alternative Therapies
Editor’s note: Find more information about long COVID in Medscape’s Long COVID Resource Center.
Sept. 22, 2022 – Entrepreneur Maya McNulty, 49, was one of the first victims of the COVID-19 pandemic. The Schenectady, NY, businesswoman spent 2 months in the hospital after catching the disease in March 2020. That September, she was diagnosed with long COVID.
“Even a simple task such as unloading the dishwasher became a major challenge,” she says.
Over the next several months, McNulty saw a range of specialists, including neurologists, pulmonologists, and cardiologists. She had months of physical therapy and respiratory therapy to help regain strength and lung function. While many of the doctors she saw were sympathetic to what she was going through, not all were.
“I saw one neurologist who told me to my face that she didn’t believe in long COVID,” she recalls. “It was particularly astonishing since the hospital they were affiliated with had a long COVID clinic.”
McNulty began to connect with other patients with long COVID through a support group she created at the end of 2020 on the social media app Clubhouse. They exchanged ideas and stories about what had helped one another, which led her to try, over the next year, a plant-based diet, Chinese medicine, and vitamin C supplements, among other treatments.
She also acted on unscientific reports she found online and did her own research, which led her to discover claims that some asthma patients with chronic coughing responded well to halotherapy, or dry salt therapy, during which patients inhale micro-particles of salt into their lungs to reduce inflammation, widen airways, and thin mucus. She’s been doing this procedure at a clinic near her home for over a year and credits it with helping with her chronic cough, especially as she recovers from her second bout of COVID-19.
It’s not cheap – a single half-hour session can cost up to $50 and isn’t covered by insurance. There’s also no good research to suggest that it can help with long COVID, according to the Cleveland Clinic.
McNulty understands that but says many people who live with long COVID turn to these treatments out of a sense of desperation.
“When it comes to this condition, we kind of have to be our own advocates. People are so desperate and feel so gaslit by doctors who don’t believe in their symptoms that they play Russian roulette with their body,” she says. “Most just want some hope and a way to relieve pain.”
Across the country, 16 million Americans have long COVID, according to the 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 COVID centers may offer therapies to help relieve symptoms, “there are no evidence-based established treatments for long COVID at this point,” says Andrew Schamess, MD, a professor of internal medicine at Ohio State Wexner Medical Center, who runs its Post-COVID Recovery Program. “You can’t blame patients for looking for alternative remedies to help them. Unfortunately, there are also a lot of people out to make a buck who are selling unproven and disproven therapies.”
Sniffing Out the Snake Oil
With few evidence-based treatments for long COVID, patients with debilitating symptoms can be tempted by unproven options. One that has gotten a lot of attention is hyperbaric oxygen. This therapy has traditionally been used to treat divers who have decompression sickness, or the bends. It’s also being touted by some clinics as an effective treatment for long COVID.
A very small trial of 73 patients with long COVID, published this 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 with similar patients who got sham treatments. But larger studies are needed to show how well it works, notes Schamess.
“It’s very expensive – roughly $120 per session – and there just isn’t the evidence there 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 it’s being marketed by some clinics as a way to prevent COVID-19 and also treat long-haul symptoms.
The FDA has issued advisories that there are no products approved to treat long COVID and recommends against 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,” says Bell. It’s also prohibitively expensive – one Cayman Islands-based company advertises its treatment for as much as $25,000.
Patients with long COVID are even traveling 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 remove microscopic blood clots that may contribute to long 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 hard to discern what may work and what’s unproven, since many primary care providers are themselves unfamiliar with even traditional long COVID treatments, Bell says. She recommends that patients ask the following questions:
- What published research is there to support these claims?
- How long should I expect to do this treatment before I see an improvement?
- What are the potential side effects?
- Will the medical provider recommending the treatment work with your current medical team to monitor progress?
“If you can’t get answers to these questions, take a step back,” says Bell.
Sorting Through Supplements
Yufang Lin, MD, an integrative specialist at the Cleveland Clinic, says many patients with long COVID enter her office with bags of supplements.
“There’s no data on them, and in large quantities, they may even be harmful,” she says.
Instead, she works closely with the Cleveland Clinic’s long COVID center to do a thorough workup of each patient, which often includes screening for certain nutritional deficiencies.
“Anecdotally, we do see many patients with long COVID who are deficient in these vitamins and minerals,” says Lin. “If someone is low, we will suggest the appropriate supplement. Otherwise, we work with them to institute some dietary changes.”
This usually involves a plant-based, anti-inflammatory eating pattern such as the Mediterranean diet, which is rich in fruits, vegetables, whole grains, nuts, fatty fish, and healthy fats such as olive oil and avocados.
Other supplements some doctors recommend for patients with long COVID are meant to treat inflammation, Bell says, although there’s not good evidence they work. One is the antioxidant coenzyme Q10.
But a small preprint study published in The Lancet this past August of 121 patients with long COVID who took 500 milligrams a day of coenzyme Q10 for 6 weeks saw no differences in recovery than those who took a placebo. Because the study is still a preprint, it has not been peer-reviewed.
Another is probiotics. A small 2021 study published in the journal Infectious Diseases Diagnosis & Treatment found that a blend 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 their use.
One that may have more promise is omega-3 fatty acids. Like many other supplements, these may help with long COVID by easing inflammation, says Steven Flanagan, MD, a rehabilitation medicine specialist at NYU Langone in New York who works with long COVID patients. Researchers at the Mount Sinai School of Medicine in New York are studying whether a supplement can help patients who have lost their sense of taste or smell after an infection, but results aren’t yet available.
Among the few alternatives that have been shown to help patients are mindfulness-based therapies – in particular, mindfulness-based forms of exercise such as tai chi and qi gong may be helpful, as they combine a gentle workout with stress reduction.
“Both incorporate meditation, which helps not only to relieve some of the anxiety associated with long COVID but allows patients to redirect their thought process so that they can cope with symptoms better,” says Flanagan.
A 2022 study 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 COVID patients, as it’s inexpensive and easy to find classes to do either at home or in their community,” he says. “Even if it doesn’t improve their long COVID symptoms, it has other benefits such as increased strength and flexibility that can boost their overall health.”