Desperate Long COVID Patients Turn to Unproven Alternative Therapies

Editor’s word: Find extra details about lengthy COVID in Medscape’s Long COVID Resource Center.

Sept. 22, 2022 – Entrepreneur Maya McNulty, 49, was one of many first victims of the COVID-19 pandemic. The Schenectady, NY, businesswoman spent 2 months within the hospital after catching the illness in March 2020. That September, she was recognized with lengthy COVID.

“Even a simple task such as unloading the dishwasher became a major challenge,” she says.

Over the following a number of months, McNulty noticed a variety of specialists, together with neurologists, pulmonologists, and cardiologists. She had months of bodily remedy and respiratory remedy to assist regain energy and lung operate. While lots of the docs she noticed had been sympathetic to what she was going via, not all had been.

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

McNulty started to attach with different sufferers with lengthy COVID via a assist group she created on the finish of 2020 on the social media app Clubhouse. They exchanged concepts and tales about what had helped each other, which led her to attempt, over the following 12 months, a plant-based weight loss plan, Chinese drugs, and vitamin C dietary supplements, amongst different therapies.

She additionally acted on unscientific reviews she discovered on-line and did her personal analysis, which led her to find claims that some bronchial asthma sufferers with power coughing responded effectively to halotherapy, or dry salt remedy, throughout which sufferers inhale micro-particles of salt into their lungs to scale back irritation, widen airways, and skinny mucus. She’s been doing this process at a clinic close to her house for over a 12 months and credit it with serving to along with her power cough, particularly as she recovers from her second bout of COVID-19.

It’s not low-cost – a single half-hour session can value as much as $50 and isn’t lined by insurance coverage. There’s additionally no good analysis to recommend that it could actually assist with lengthy COVID, based on the Cleveland Clinic.

McNulty understands that however says many individuals who reside with lengthy COVID flip to those therapies out of a way of desperation.

“When 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 don’t believe in their symptoms that they play Russian roulette with their body,” she says. “Most just want some hope and a way to relieve pain.”

Across the nation, 16 million Americans have lengthy COVID, based on the Brookings Institution’s evaluation of a 2022 Census Bureau report. The report additionally estimated that as much as 1 / 4 of them have such debilitating signs that they’re not in a position to work. While lengthy COVID facilities could supply therapies to assist relieve signs, “there are no evidence-based established treatments for long COVID at this point,” says Andrew Schamess, MD, a professor of inner drugs at Ohio State Wexner Medical Center, who runs its Post-COVID Recovery Program. “You can’t 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.”

Sniffing Out the Snake Oil

With few evidence-based therapies for lengthy COVID, sufferers with debilitating signs will be tempted by unproven choices. One that has gotten a variety of consideration is hyperbaric oxygen. This remedy has historically been used to deal with divers who’ve decompression illness, or the bends. It’s additionally being touted by some clinics as an efficient therapy for lengthy COVID.

A really small trial of 73 sufferers with lengthy COVID, revealed this July within the journal Scientific Reports, discovered that these handled in a high-pressure oxygen system 5 days per week for two months confirmed enhancements in mind fog, ache, power, sleep, nervousness, and despair, in contrast with comparable sufferers who bought sham therapies. But bigger research are wanted to point out how effectively it really works, notes Schamess.

“It’s very expensive – roughly $120 per session – and there just isn’t the evidence there to support its use,” he says.

In addition, the remedy itself carries dangers, reminiscent of ear and sinus ache, center ear damage, non permanent imaginative and prescient adjustments, and, very not often, lung collapse, based on the FDA.

One “particularly troubling” therapy being supplied, says Kathleen Bell, MD, chair of the Department of Physical Medicine and Rehabilitation on the University of Texas Southwestern Medical Center, is stem cell remedy. This remedy continues to be in its infancy, nevertheless it’s being marketed by some clinics as a technique to stop COVID-19 and likewise deal with long-haul signs.

The FDA has issued advisories that there are not any merchandise accredited to deal with lengthy COVID and recommends in opposition to their use, besides in a medical trial.

“There’s absolutely no regulation – you don’t know what you’re getting, and there’s no research to suggest this therapy even works,” says Bell. It’s additionally prohibitively costly – one Cayman Islands-based firm advertises its therapy for as a lot as $25,000.

Patients with lengthy COVID are even touring so far as Cyprus, Germany, and Switzerland for a process generally known as blood washing, wherein giant needles are inserted into veins to filter blood and take away lipids and inflammatory proteins, the British Medical Journal reported in July. Some sufferers are additionally prescribed blood thinners to take away microscopic blood clots that will contribute to lengthy COVID. But this therapy can also be costly, with many individuals paying $10,000-$15,000 out of pocket, and there’s no revealed proof to recommend it really works, based on theBMJ.

It will be notably exhausting to discern what may go and what’s unproven, since many main care suppliers are themselves unfamiliar with even conventional lengthy COVID therapies, Bell says. She recommends that sufferers ask the next questions:

• What revealed analysis is there to assist these claims?
• How lengthy ought to I anticipate to do that therapy earlier than I see an enchancment?
• What are the potential uncomfortable side effects?
• Will the medical supplier recommending the therapy work along with your present medical group to observe progress?

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

Sorting Through Supplements

Yufang Lin, MD, an integrative specialist on the Cleveland Clinic, says many sufferers with lengthy COVID enter her workplace with baggage of dietary supplements.

“There’s no data on them, and in large quantities, they may even be harmful,” she says.

Instead, she works carefully with the Cleveland Clinic’s lengthy COVID middle to do an intensive workup of every affected person, which frequently consists of screening for sure dietary deficiencies.

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

­This normally entails a plant-based, anti-inflammatory consuming sample such because the Mediterranean weight loss plan, which is wealthy in fruits, greens, complete grains, nuts, fatty fish, and wholesome fat reminiscent of olive oil and avocados.

Other dietary supplements some docs suggest for sufferers with lengthy COVID are supposed to deal with irritation, Bell says, though there’s not good proof they work. One is the antioxidant coenzyme Q10.

But a small preprint examine revealed in The Lancet this previous August of 121 sufferers with lengthy COVID who took 500 milligrams a day of coenzyme Q10 for six weeks noticed no variations in restoration than those that took a placebo. Because the examine continues to be a preprint, it has not been peer-reviewed.

Another is probiotics. A small 2021 examine revealed within the journal Infectious Diseases Diagnosis & Treatment discovered {that a} mix of 5 lactobacillus probiotics, together with a prebiotic referred to as inulin, taken for 30 days, helped with long-term COVID signs reminiscent of coughing and fatigue. But bigger research must be performed to assist their use.

One that will have extra promise is omega-3 fatty acids. Like many different dietary supplements, these could assist with lengthy COVID by easing irritation, says Steven Flanagan, MD, a rehabilitation drugs specialist at NYU Langone in New York who works with lengthy COVID sufferers. Researchers on the Mount Sinai School of Medicine in New York are finding out whether or not a complement can assist sufferers who’ve misplaced their sense of style or scent after an an infection, however outcomes aren’t but out there.

Among the few options which have been proven to assist sufferers are mindfulness-based therapies – specifically, mindfulness-based types of train reminiscent of tai chi and qi gong could also be useful, as they mix a delicate exercise with stress discount.

“Both 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,” says Flanagan.

A 2022 examine revealed in BMJ Open discovered that these two actions decreased inflammatory markers and improved respiratory muscle energy and performance in sufferers recovering from COVID-19.

“I recommend these activities to all my long COVID patients, as 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 their long COVID symptoms, it has other benefits such as increased strength and flexibility that can boost their overall health.”