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Desperate Long COVID Patients Turn to Unproven Alternative Therapies

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EditorтАЩs note: Find more information about long COVID in MedscapeтАЩs Long COVID Resource Center.

Sept. 22, 2022 тАУ 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.

тАЬEven a simple task such as unloading the dishwasher became a major challenge,тАЭ 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.

тАЬI saw one neurologist who told me to my face that she didnтАЩt believe in long COVID,тАЭ she recalls. тАЬIt was particularly astonishing since the hospital they were affiliated with had a long COVID clinic.тАЭ

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. SheтАЩs 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.

ItтАЩs not cheap тАУ a single half-hour session can cost up to $50 and isnтАЩt covered by insurance. ThereтАЩs 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.

тАЬWhen 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 donтАЩt believe in their symptoms that they play Russian roulette with their body,тАЭ she says. тАЬMost just want some hope and a way to relieve pain.тАЭ

Across the country, 16 million Americans have long COVID, according to the Brookings InstitutionтАЩs 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, тАЬthere are no evidence-based established treatments for long COVID at this point,тАЭ says Andrew Schamess, MD, a professor of internal medicine at Ohio State Wexner Medical Center, who runs its Post-COVID Recovery Program. тАЬYou canтАЩt 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.тАЭ

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. ItтАЩs 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.

тАЬItтАЩs very expensive тАУ roughly $120 per session тАУ and there just isnтАЩt the evidence there to support its use,тАЭ 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 тАЬparticularly troublingтАЭ 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 itтАЩs 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.

тАЬThereтАЩs absolutely no regulation тАУ you donтАЩt know what youтАЩre getting, and thereтАЩs no research to suggest this therapy even works,тАЭ says Bell. ItтАЩs also prohibitively expensive тАУ 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 thereтАЩs no published evidence to suggest it works, according to theBMJ.

It can be particularly hard to discern what may work and whatтАЩs 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?

тАЬIf you canтАЩt get answers to these questions, take a step back,тАЭ 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.

тАЬThereтАЩs no data on them, and in large quantities, they may even be harmful,тАЭ she says.

Instead, she works closely with the Cleveland ClinicтАЩs long COVID center to do a thorough workup of each patient, which often includes screening for certain nutritional deficiencies.

тАЬAnecdotally, we do see many patients with long COVID who are deficient in these vitamins and minerals,тАЭ says Lin. тАЬIf someone is low, we will suggest the appropriate supplement. Otherwise, we work with them to institute some dietary changes.тАЭ

┬нThis 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 thereтАЩs 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 arenтАЩt yet available.

Among the few alternatives that have been shown to help patients are mindfulness-based therapies тАУ 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.

тАЬBoth 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,тАЭ 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.

тАЬI recommend these activities to all my long COVID patients, as itтАЩs inexpensive and easy to find classes to do either at home or in their community,тАЭ he says. тАЬEven if it doesnтАЩt improve their long COVID symptoms, it has other benefits such as increased strength and flexibility that can boost their overall health.тАЭ

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