Desperate Long COVID Patients Turn to Unproven Alternative Therapies

Editor’s note: Visit Medscape for more information on Long COVID Long COVID Resource Center.

September 22, 2022 – Entrepreneur Maya McNulty, 49, was one of the first victims of the COVID-19 pandemic. The Schenectady, NY businesswoman spent two months in the hospital after contracting the disease in March 2020. She was long diagnosed with COVID in September this year.

“Even a simple task like emptying the dishwasher became a big challenge,” she says.

Over the next few months, McNulty saw a number of specialists, including neurologists, pulmonologists, and cardiologists. She underwent months of physical therapy and respiratory therapy to regain her strength and lung function. While many of the doctors she saw understood what she was going through, not all were.

“I saw a neurologist say to my face that she doesn’t believe in long COVID,” she recalls. “It was particularly amazing as the hospital they were affiliated with had a long history of COVID.”

McNulty began connecting with other long-COVID patients through a support group she started on social media app Clubhouse in late 2020. They shared ideas and stories about what had helped each other, leading them to try a plant-based diet, Chinese medicine and vitamin C supplements, among other things, over the next year.

She also responded to unscientific reports she found online and conducted her own research, which led her to claims that some asthma patients with chronic coughs responded well to halotherapy, or dry salt therapy, in which patients inhale salt microparticles into their lungs to induce inflammation reduce, dilate airways and thin phlegm. She’s been performing this procedure at a clinic near her home for over a year and credits it with helping with her chronic cough, particularly as she recovers from her second bout of COVID-19.

It’s not cheap — a single half-hour session can cost as much as $50 and isn’t covered by insurance. There is also no good research to suggest that it can help for long COVID, according to the Cleveland Clinic.

McNulty understands this but says many people living with long COVID are turning to these treatments out of desperation.

“When it comes to this condition, we have to be our own advocates in a way. People are so desperate and numbed by doctors who don’t believe in their symptoms that they play Russian roulette with their bodies,” she says. “Most just want some hope and a way to ease the pain.”

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Across the country, 16 million Americans have long had COVID, according to the Brookings Institution analysis of a 2022 Census Bureau report. The report also estimates that up to a quarter of them have such debilitating symptoms that they are unable to cope Work. While long-COVID centers may offer therapies to relieve symptoms, “there are currently no evidence-based established treatments for long-COVID,” says Andrew Schamess, MD, a professor of internal medicine at Ohio State Wexner Medical Center, who directs 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 disproved therapies.”

Sniff 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 garnered a lot of attention is hyperbaric oxygen. This therapy has traditionally been used to treat divers with decompression sickness or muscle tension. It is also touted by some clinics as an effective treatment for long COVID.

A very small study of 73 patients with long COVID published in the journal this July Scientific Reports, found that those treated with 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 receiving 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 it’s being used,” he says.

In addition, the therapy itself carries risks such as ear and sinus pain, middle ear injury, temporary vision problems, and very rarely, collapsed lung, according to the FDA.

One “especially troubling” treatment on offer, 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 to prevent COVID-19 and also treat long-term symptoms.

The FDA has issued guidance that there are no products approved to treat long-term COVID and discourages their use except in a clinical trial.

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“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 prohibitively expensive — one Cayman Islands-based company advertises its treatment for as much as $25,000.

Patients with long-standing COVID even travel as far as Cyprus, Germany and Switzerland for a procedure known as haemodialysis, in which large needles are inserted into veins to filter blood and remove lipids and inflammatory proteins British Medical Journal reported in July. Some patients are also prescribed blood thinners to remove microscopic blood clots that can contribute to a long COVID. But this treatment is also expensive, with many people paying $10,000 to $15,000 out of pocket, and there’s no published evidence that it works, they sayBMJ

It can be particularly difficult to discern what might work and what hasn’t been proven, given that many GPs themselves aren’t even familiar with traditional long COVID treatments, Bell says. She recommends that patients ask themselves the following questions:

  • What published research is there to support these claims?
  • How long should I expect this treatment before seeing improvement?
  • What are the possible side effects?
  • Will the medical provider recommending treatment work with your current medical team to monitor progress?

“If you don’t get answers to these questions, take a step back,” says Bell.

Sort supplements

Yufang Lin, MD, an integrative specialist at the Cleveland Clinic, says many long-COVID patients walk into their offices with bags of supplements.

“There is no data on them, and in large amounts they can even be harmful,” she says.

Instead, she works closely with the Cleveland Clinic’s longstanding COVID center to thoroughly examine each patient, which often includes screening for specific nutritional deficiencies.

“Anecdotally, we see many patients with long COVID who are deficient in these vitamins and minerals,” Lin says. “If someone is low, we will suggest the appropriate supplement. Otherwise, we work with them to make some dietary changes.”

This usually involves a plant-based, anti-inflammatory diet like the Mediterranean diet, which is high in fruits, vegetables, whole grains, nuts, oily fish, and healthy fats like olive oil and avocados.

Other supplements that some doctors are recommending for long-COVID patients are designed to treat inflammation, Bell says, although there’s no good evidence they work. One of them is the antioxidant coenzyme Q10.

But a small preprint study published in The lancet Last August, 121 patients with long COVID who took 500 milligrams of coenzyme Q10 daily for 6 weeks saw no differences in recovery than those who took a Placebo. Since the study is still a preprint, it was not 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 like cough and cough Fatigue. However, larger studies need to be conducted to support its use.

One that might show more promise is omega-3 fatty acids. Like many other dietary supplements, these can help with long COVID by reducing 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 dietary supplement can help patients who have lost their sense of taste or smell after an infection, but the results aren’t out yet available.

Among the few alternatives that have been shown to help patients are mindfulness-based therapies – mindfulness-based forms of movement such as tai chi and qi gong in particular can be helpful as they combine gentle exercise with stress reduction.

“Both involve meditation, which not only helps alleviate some of the anxiety associated with a long COVID, but allows patients to redirect their thought process so they can better manage the symptoms,” says Flanagan.

A 2022 study published in BMJ open found that both of these activities reduced markers of inflammation and improved respiratory muscle strength and function in patients recovering from COVID-19.

“I recommend these activities to all my long-time COVID patients because 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 her long-standing COVID symptoms, it does have other benefits like increased strength and flexibility that may improve her overall health.”

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