Desperate Long COVID Patients Turn to Unproven Alternative Therapies

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Editor’s note: Find much accusation astir agelong COVID successful Medscape’s Long COVID Resource Center.

Sept. 22, 2022 – Entrepreneur Maya McNulty, 49, was 1 of the archetypal victims of the COVID-19 pandemic. The Schenectady, NY, businesswoman spent 2 months successful the infirmary aft catching the illness successful March 2020. That September, she was diagnosed with long COVID.

“Even a elemental task specified arsenic unloading the dishwasher became a large challenge,” she says.

Over the adjacent respective months, McNulty saw a scope of specialists, including neurologists, pulmonologists, and cardiologists. She had months of physical therapy and respiratory therapy to assistance regain spot and lung function. While galore of the doctors she saw were sympathetic to what she was going through, not each were.

“I saw 1 neurologist who told maine to my look that she didn’t judge successful agelong COVID,” she recalls. “It was peculiarly astonishing since the infirmary they were affiliated with had a agelong COVID clinic.”

McNulty began to link with different patients with agelong COVID done a enactment radical she created astatine the extremity of 2020 connected the societal media app Clubhouse. They exchanged ideas and stories astir what had helped 1 another, which led her to try, implicit the adjacent year, a plant-based diet, Chinese medicine, and vitamin C supplements, among different treatments.

She besides acted connected unscientific reports she recovered online and did her ain research, which led her to observe claims that immoderate asthma patients with chronic coughing responded good to halotherapy, oregon adust brackish therapy, during which patients inhale micro-particles of brackish into their lungs to trim inflammation, widen airways, and bladed mucus. She’s been doing this process astatine a session adjacent her location for implicit a twelvemonth and credits it with helping with her chronic cough, particularly arsenic she recovers from her 2nd bout of COVID-19.

It’s not inexpensive – a azygous half-hour league tin outgo up to $50 and isn’t covered by insurance. There’s besides no bully research to suggest that it tin assistance with agelong COVID, according to the Cleveland Clinic.

McNulty understands that but says galore radical who unrecorded with agelong COVID crook to these treatments retired of a consciousness of desperation.

“When it comes to this condition, we benignant of person to beryllium our ain advocates. People are truthful hopeless and consciousness truthful gaslit by doctors who don’t judge successful their symptoms that they play Russian roulette with their body,” she says. “Most conscionable privation immoderate anticipation and a mode to relieve pain.”

Across the country, 16 cardinal Americans person agelong COVID, according to the Brookings Institution’s investigation of a 2022 Census Bureau report. The study besides estimated that up to a 4th of them person specified debilitating symptoms that they are nary longer capable to work. While agelong COVID centers whitethorn connection therapies to assistance relieve symptoms, “there are nary evidence-based established treatments for agelong COVID astatine this point,” says Andrew Schamess, MD, a prof of interior medicine astatine Ohio State Wexner Medical Center, who runs its Post-COVID Recovery Program. “You can’t blasted patients for looking for alternate remedies to assistance them. Unfortunately, determination are besides a batch of radical retired to marque a subordinate who are selling unproven and disproven therapies.”

Sniffing Out the Snake Oil

With fewer evidence-based treatments for agelong COVID, patients with debilitating symptoms tin beryllium tempted by unproven options. One that has gotten a batch of attraction is hyperbaric oxygen. This therapy has traditionally been utilized to dainty divers who person decompression sickness, oregon the bends. It’s besides being touted by immoderate clinics arsenic an effectual attraction for agelong COVID.

A precise tiny proceedings of 73 patients with agelong COVID, published this July successful the diary Scientific Reports, recovered that those treated successful a high-pressure oxygen strategy 5 days a week for 2 months showed improvements successful encephalon fog, pain, energy, sleep, anxiety, and depression, compared with akin patients who got sham treatments. But larger studies are needed to amusement however good it works, notes Schamess.

“It’s precise costly – astir $120 per league – and determination conscionable isn’t the grounds determination to enactment its use,” helium says.

In addition, the therapy itself carries risks, specified arsenic receptor and sinus pain, mediate receptor injury, impermanent imaginativeness changes, and, precise rarely, lung collapse, according to the FDA.

One “particularly troubling” attraction being offered, says Kathleen Bell, MD, seat of the Department of Physical Medicine and Rehabilitation astatine the University of Texas Southwestern Medical Center, is stem cell therapy. This therapy is inactive successful its infancy, but it’s being marketed by immoderate clinics arsenic a mode to forestall COVID-19 and besides dainty long-haul symptoms.

The FDA has issued advisories that determination are nary products approved to dainty agelong COVID and recommends against their use, but successful a objective trial.

“There’s perfectly nary regularisation – you don’t cognize what you’re getting, and there’s nary probe to suggest this therapy adjacent works,” says Bell. It’s besides prohibitively costly – one Cayman Islands-based company advertises its attraction for arsenic overmuch arsenic $25,000.

Patients with agelong COVID are adjacent traveling arsenic acold arsenic Cyprus, Germany, and Switzerland for a process known arsenic humor washing, successful which ample needles are inserted into veins to filter humor and region lipids and inflammatory proteins, the British Medical Journal reported successful July. Some patients are besides prescribed blood thinners to region microscopic humor clots that whitethorn lend to agelong COVID. But this attraction is besides expensive, with galore radical paying $10,000-$15,000 retired of pocket, and there’s nary published grounds to suggest it works, according to theBMJ.

It tin beryllium peculiarly hard to discern what whitethorn enactment and what’s unproven, since galore superior attraction providers are themselves unfamiliar with adjacent accepted agelong COVID treatments, Bell says. She recommends that patients inquire the pursuing questions:

What published probe is determination to enactment these claims?How agelong should I expect to bash this attraction earlier I spot an improvement?What are the imaginable broadside effects?Will the aesculapian supplier recommending the attraction enactment with your existent aesculapian squad to show progress?

“If you can’t get answers to these questions, instrumentality a measurement back,” says Bell.

Sorting Through Supplements

Yufang Lin, MD, an integrative specializer astatine the Cleveland Clinic, says galore patients with agelong COVID participate her bureau with bags of supplements.

“There’s nary information connected them, and successful ample quantities, they whitethorn adjacent beryllium harmful,” she says.

Instead, she works intimately with the Cleveland Clinic’s agelong COVID halfway to bash a thorough workup of each patient, which often includes screening for definite nutritional deficiencies.

“Anecdotally, we bash spot galore patients with agelong COVID who are deficient successful these vitamins and minerals,” says Lin. “If idiosyncratic is low, we volition suggest the due supplement. Otherwise, we enactment with them to institute immoderate dietary changes.”

­This usually involves a plant-based, anti-inflammatory eating signifier specified arsenic the Mediterranean diet, which is affluent successful fruits, vegetables, whole grains, nuts, fatty fish, and healthy fats specified arsenic olive lipid and avocados.

Other supplements immoderate doctors urge for patients with agelong COVID are meant to dainty inflammation, Bell says, though there’s not bully grounds they work. One is the antioxidant coenzyme Q10.

But a small preprint study published successful The Lancet this past August of 121 patients with agelong COVID who took 500 milligrams a time of coenzyme Q10 for 6 weeks saw nary differences successful betterment than those who took a placebo. Because the survey is inactive a preprint, it has not been peer-reviewed.

Another is probiotics. A tiny 2021 survey published successful the diary Infectious Diseases Diagnosis & Treatment recovered that a blend of 5 lactobacillus probiotics, on with a prebiotic called inulin, taken for 30 days, helped with semipermanent COVID symptoms specified arsenic coughing and fatigue. But larger studies request to beryllium done to enactment their use.

One that whitethorn person much committedness is omega-3 fatty acids. Like galore different supplements, these whitethorn assistance with agelong COVID by easing inflammation, says Steven Flanagan, MD, a rehabilitation medicine specializer astatine NYU Langone successful New York who works with agelong COVID patients. Researchers astatine the Mount Sinai School of Medicine successful New York are studying whether a supplement tin assistance patients who person mislaid their sense of taste oregon odor aft an infection, but results aren’t yet available.

Among the fewer alternatives that person been shown to assistance patients are mindfulness-based therapies – successful particular, mindfulness-based forms of exercise specified arsenic tai chi and qi gong whitethorn beryllium helpful, arsenic they harvester a gentle workout with accent reduction.

“Both incorporated meditation, which helps not lone to relieve immoderate of the anxiousness associated with agelong COVID but allows patients to redirect their thought process truthful that they tin header with symptoms better,” says Flanagan.

A 2022 survey published successful BMJ Open recovered that these 2 activities reduced inflammatory markers and improved respiratory musculus spot and relation successful patients recovering from COVID-19.

“I urge these activities to each my agelong COVID patients, arsenic it’s inexpensive and casual to find classes to bash either astatine location oregon successful their community,” helium says. “Even if it doesn’t amended their agelong COVID symptoms, it has different benefits specified arsenic accrued spot and flexibility that tin boost their wide health.”