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Desperate Long-Term COVID Patients Turn to Unproven Therapies

Editor’s note: Find the latest news and guidance on long-term COVID at Medscape’s Long-term COVID Resource Center.

Businesswoman 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 contracting the illness in March 2020. That September, she was diagnosed with prolonged COVID.

“Even a simple task like unloading the dishwasher became a big challenge,” he says.

Over the next several months, McNulty saw a variety 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 was going on, not all were.

“I saw a neurologist who told me to my face that she didn’t believe in prolonged COVID,” she recalls. “It was particularly surprising since the hospital they were affiliated with had a large COVID clinic.”

McNulty began connecting with other long-term COVID patients through a support group he created in late 2020 on the Clubhouse social media app. They exchanged ideas and stories about how she had helped each other, leading her to try a plant-based diet, Chinese medicine, and vitamin C supplements, among other treatments, for the next year.

She also acted on unscientific reports she found online and did her own research, leading her to uncover claims that some asthma Chronic cough patients responded well to halotherapy, or dry salt therapy, during which patients inhale microparticles of salt into the lungs to reduce inflammation, widen airways and thin mucus. She has been doing this procedure at a clinic near her home for over a year and credits it for helping her with her chronic coughespecially as he recovers from his second bout of COVID-19.

It’s not cheap: a single half-hour session can cost up to $50 and is not covered by insurance. there is without a good investigation to suggest it may help with prolonged COVID, according to the Cleveland Clinic.

McNulty understands that, but says many people living with COVID for a long time turn to these treatments out of desperation.

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

Nationwide, 16 million Americans have long-term COVID, according to the Brookings Institution analysis of a 2022 Census Bureau report. The report also estimated that up to a quarter of them have symptoms so debilitating that they can no longer work. While long-COVID centers may offer therapies to help relieve symptoms, “there are no established evidence-based treatments for long-COVID at this time,” says Andrew Schamess, MD, professor of internal medicine at the Medical Center. Wexner of Ohio State, who runs its Post-COVID Recovery Program. “Patients cannot be blamed for seeking alternative remedies to help them. Unfortunately, there are also many people looking to make money selling unproven and disproven therapies.”

smell the snake oil

With few evidence-based treatments for prolonged COVID, patients with debilitating symptoms may be tempted by unproven options. One that has drawn a lot of attention is hyperbaric oxygen. This therapy has traditionally been used to treat divers who have decompression sickness or bends. Some clinics also tout it as an effective treatment for prolonged COVID.

A very small trial of 73 patients with prolonged COVID, published this July in the journal scientific reports , found that those treated on 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 received sham treatments. But larger studies are needed to show how well it works, Schamess says.

“It’s very expensive, about $120 a session, and there’s just no evidence to support its use,” he says.

In addition, the therapy itself carries risks, including ear and sinus pain, middle ear injury, temporary vision changes and, very rarely, lung collapse, according to the FDA.

One “particularly concerning” 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 some clinics market it as a way to prevent COVID-19 and also treat long-term symptoms.

The FDA has issued advisories that there are no approved products to treat prolonged COVID and recommends against using them except in a clinical trial.

“There is absolutely no regulation — you don’t know what you’re getting, and there’s no research to suggest this therapy works,” says Bell. It’s also prohibitively expensive – a company based in the Cayman Islands advertise your treatment for up to $25,000.

Long-term COVID patients even 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 the blood and remove it. lipids and inflammatory proteins BMJ reports in July. Some patients are also prescribed blood thinners to remove microscopic blood clots that can contribute to prolonged COVID. But this treatment is also expensive, with many people paying between $10,000 and $15,000 out of pocket, and there is no published evidence to suggest that it works, according to the BMJ

It can be particularly difficult to discern what may work and what isn’t proven, since many primary care providers aren’t familiar with even traditional, long-acting treatments for COVID, says Bell. She recommends that patients ask the following questions:

  • What published research exists to support these claims?

  • How long should I wait to do 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,” says Bell.

Classification through supplements

Yufang Lin, MD, an integration specialist at the Cleveland Clinic, says many long-term COVID patients come into his office with bags of supplements.

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

Instead, he works closely with the Cleveland Clinic’s COVID center to perform a comprehensive screening of each patient, which often includes screening for certain nutritional deficiencies.

“Anecdotally, we see a lot of long-term COVID patients who are deficient in these vitamins and minerals,” says Lin. “If someone is low, we’ll suggest the appropriate supplement. If not, we’ll work with them to institute some dietary changes.”

This typically 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 like olive oil and avocados.

Other supplements some doctors are recommending for long-term COVID patients are meant to treat inflammation, Bell says, though there’s no strong evidence that they work. One is the antioxidant. Coenzyme Q10.

but a small prepress studio published in the lancet Last August, 121 patients with prolonged COVID who took 500 milligrams a day of coenzyme Q10 for 6 weeks saw no difference 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 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 fatigue. But larger studies are needed to support its use.

One that may hold more promise is omega-3 fatty acids. Like many other supplements, these can help with long-term COVID by relieving 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 studying if a supplement it can help patients who have lost their sense of taste or smell after an infection, but the results are not 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 can be helpful, as they combine gentle training with stress reduction.

“Both of these couple meditations, which help not only relieve some of the anxiety associated with prolonged COVID, but allow patients to redirect their thought process so they can better deal with symptoms,” says Flanagan.

A 2022 study published in BMJ Open found that both of these 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, as they are inexpensive and easy to find classes to do at home or in your community,” he says. “Even if it doesn’t improve your long-term COVID symptoms, it has other benefits, like increased strength and flexibility that can improve your overall health.”

sources

Maya McNulty, 49, longtime COVID-19 advocate, Schenectady, NY.

Andrew Schamess, MD, professor of internal medicine, Ohio State Wexner Medical Center, who leads its Post-COVID Recovery Program.

Kathleen Bell, MD, Chair, Department of Physical Medicine and Rehabilitation, University of Texas Southwestern Medical Center.

Yufang Lin, MD, Integration Specialist, Cleveland Clinic.

Steven Flanagan, MD, specialist in rehabilitation medicine, NYU Langone, New York City.

Cleveland Clinic: “Do Salt Rooms Really Offer Health Benefits?”

National Center for Health Statistics: “Long COVID: Household Pulse Study.”

scientific reports: “hyperbaric oxygen therapy Improves neurocognitive functions and symptoms of post-COVID condition: randomized controlled trial”.

The BMJ: “Long-Term COVID Patients Travel Abroad for Expensive, Experimental ‘Blood Washing'”.

the lancet: “Coenzyme Q10 as a treatment for the post-COVID-19 condition”.

Diagnosis and treatment of infectious diseases: “The influence of a mixture of Lactobacillus probiotics and prebiotic inulin on the duration and severity of symptoms among people with COVID-19”.

BMJ Open: “Effects of Tai Chi and Qigong on rehabilitation after COVID-19: A protocol for systematic review and meta-analysis”.

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