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Long-Desperate COVID Patients Turn to Unproven Alternative Therapies

Editor’s note: Find more information on the long 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 Schenectady, NY businesswoman spent 2 months in the hospital after catching the disease in March 2020. In September, she was diagnosed with long-term COVID.

“Even a simple task like emptying the dishwasher has become a major challenge,” she says.

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

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

McNulty began connecting with other long-term COVID patients through a support group she created in late 2020 on the Clubhouse social media app. They exchanged ideas and stories about what had helped each other, 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 uncover claims that some asthma patients with chronic coughs responded well to halotherapy or dry salt therapy, in which patients inhaled microparticles of salt into their lungs. to reduce inflammation, widen the airways and thin mucus. She’s been doing the 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 is also no good research suggesting that it can help 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 desperation.

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

Across the country, 16 million Americans have long-standing COVID, according to Brookings Institution analysis of a 2022 Census Bureau report. The report also estimates that up to a quarter of them exhibit such debilitating symptoms that they are no longer able to work. Although long COVID centers may offer therapies to help relieve symptoms, “there are currently no established evidence-based treatments for long COVID,” says Andrew Schamess, MD, professor of internal medicine at Ohio. State Wexner Medical Center, which is leading its Post-COVID Recovery Program. “You can’t blame patients for looking for alternative remedies to help them. Unfortunately, there are also plenty of money-making people selling unproven and disproven therapies.

Sniff snake oil

With few evidence-based treatments for long COVID, patients with debilitating symptoms may be tempted by unproven options. Hyperbaric oxygen is one that has received a lot of attention. This therapy has traditionally been used to treat divers suffering from decompression sickness or bends. It is also touted by some clinics as an effective treatment for long COVIDs.

A very small trial of 73 patients with long COVID, published in July in the journal Scientific reports, found that people treated in a high pressure oxygen system 5 days a week for 2 months had 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, notes Schamess.

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

Additionally, the therapy itself carries risks, such as ear and sinus pain, middle ear damage, temporary vision changes and, very rarely, collapsed lungs, according to the FDA.

One “particularly troubling” treatment 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 issued advisories that there are no approved products to treat long COVID and advises against their use except in a clinical trial.

“There are absolutely no regulations — 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 – a Cayman Islands-based company advertises its treatment at up to $25,000.

Long COVID patients even travel to Cyprus, Germany and Switzerland for a procedure known as blood washing, in which large needles are inserted into the veins to filter the blood and remove lipids and inflammatory proteins, British medical journal reported in July. Some patients are also prescribed blood thinners to clear up microscopic blood clots that can contribute to long COVID. But this treatment is also expensive, with many people paying out of pocket between $10,000 and $15,000, and no published evidence to suggest it works, according to theBMJ.

It can be especially difficult to discern what may work and what isn’t proven, because many primary care providers themselves aren’t familiar with even traditional, lengthy 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 wait to do this treatment before seeing 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,” Bell says.

Sort supplements

Yufang Lin, MD, integrative specialist at the Cleveland Clinic, says many long-COVID patients walk 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-running COVID center to perform a thorough workup for each patient, which often includes screening for certain nutritional deficiencies.

“Anecdotally, we see many patients with long COVID who lack these vitamins and minerals,” says Lin. “If someone is weak, we will suggest the appropriate supplement. If not, we work with them to institute dietary changes.

This typically involves a plant-based anti-inflammatory diet, 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 that some doctors recommend for patients with long-term COVID are intended to treat inflammation, Bell says, although there’s no strong evidence for their effectiveness. One 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 daily 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 study from 2021 published in the journal Diagnosis and treatment of infectious diseases found that a blend of five lactobacillus probiotics, along with a prebiotic called inulin, taken for 30 days helped relieve long-term COVID symptoms such as cough and fatigue. But larger studies need to be conducted to support their use.

Omega-3 fatty acids might hold more promise. Like many other supplements, these can help fight long COVIDs by easing inflammation, says Steven Flanagan, MD, a rehabilitation medicine specialist at NYU Langone in New York who works with patients with long COVIDs. . Researchers at 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 the results are not yet known. available.

Among the few alternatives that have been shown to help patients are mindfulness-based therapies – specifically, mindfulness-based forms of exercise such as tai chi and qigong. can be helpful, as they combine gentle training with stress reduction.

“Both incorporate meditation, which not only helps relieve some of the anxiety associated with long COVID, but allows patients to redirect their thought process so they can better cope 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 COVID patients because it’s inexpensive and easy to find classes to do at home or in their community,” he says. “While it doesn’t improve their long COVID symptoms, it has other benefits such as increased strength and flexibility that can improve their overall health.”

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