Long-Term COVID Patients in Need Resort to Untested Alternative Therapies

49-year-old entrepreneur Maya McNulty was among the first people to get ill with COVID-19. The entrepreneur from Schenectady, New York, contracted the illness in March 2020 and was hospitalised for two months. She was given the diagnosis of extended COVID in September.

Even something as straightforward as filling the dishwasher became quite difficult, she claims.

McNulty visited a variety of experts during the ensuing months, including cardiologists, pulmonologists, and neurologists. She underwent months of respiratory and physical therapy to help her regain her strength. Not all of the doctors she encountered were sympathetic, despite the fact that many of them were.

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

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 took action on unreliable information she found online and conducted her own research, which helped her come across claims that some asthmatics with chronic coughing responded favourably to halotherapy, also known as dry salt therapy, in which patients breathe inhalations of salt minuscule enough to thin mucus and reduce inflammation. As she recovers from her second case of COVID-19, she has been performing this operation at a facility close to her home for more than a year and believes it has helped with her chronic cough.

It is not inexpensive; a single, 30-minute session can cost up to $50 and is not insured. The Cleveland Clinic claims that there is no credible study to support the notion that it can aid in the treatment of extended COVID.

Despite acknowledging this, McNulty claims that many COVID patients seek out these treatments out of desperation.

“We kind of have to be our own advocates when it comes to this illness. People play Russian roulette with their bodies because they are so desperate and feel so betrayed by doctors who don’t believe in their symptoms, according to her. Most people simply want some hope and a method to stop hurting.

According to an examination of a 2022 Census Bureau report by the Brookings Institution, 16 million Americans nationwide have lengthy COVID. According to the survey, up to a fifth of them may no longer be able to work due to their incapacitating symptoms. According to Andrew Schamess, MD, a professor of internal medicine at Ohio State Wexner Medical Center who directs the Post-COVID Recovery Program, long COVID centres may provide therapies to help with symptom relief but “there are no evidence-based established treatments for long COVID at this point.” “You can’t fault them for seeking out non-conventional treatments to aid them. Unfortunately, there are also a lot of people peddling questionable and unproven treatments who are just looking to make a quick cash.

Identifying Snake Oil

Patients with incapacitating symptoms may be enticed by unproven choices because there aren’t many evidence-based treatments for lengthy COVID. Hyperbaric oxygen has garnered a lot of attention. Divers who suffer from decompression sickness, sometimes known as the bends, have historically received treatment with this method. Some clinics are also promoting it as a successful treatment for extended COVID.

In a very small study involving 73 patients with long COVID, published this July in the journal Scientific Reports, it was discovered that those treated with a high-pressure oxygen system five days a week for two months showed improvements in brain fog, pain, energy, sleep, anxiety, and depression in comparison to patients with similar conditions who received sham treatments. Schamess observes that bigger studies are required to demonstrate how well it functions.

It costs a lot—roughly $120 per session—and there isn’t enough proof to warrant its use, he claims.

According to the FDA, there are additional hazards associated with the therapy itself, including ear and sinus pain, middle ear damage, transient vision abnormalities, and, very infrequently, lung collapse.

Stem cell therapy, according to Kathleen Bell, MD, chair of the Department of Physical Medicine and Rehabilitation at the University of Texas Southwestern Medical Center, is one “especially worrying” technique available. Although this treatment is still in its early stages, some clinics are advertising it as a solution to both prevent COVID-19 and treat its long-term symptoms.

The FDA has issued warnings stating that there are no medications approved to treat long-term COVID and that their use is not advised outside of controlled trials.

There is zero regulation, so you have no idea what you’re getting, and there is no evidence that this therapy even works, according to Bell. Additionally, it is unreasonably expensive; one Cayman Islands-based business lists its therapy as costing up to $25,000.

According to a July article in the British Medical Journal, patients with lengthy COVID are even flying as far as Cyprus, Germany, and Switzerland for a process called as blood washing, in which big needles are placed into veins to filter blood and remove lipids and inflammatory proteins. Blood thinners are sometimes provided to patients in order to dissolve tiny blood clots that could prolong COVID. According to theBMJ, this treatment is also costly, with many patients forking out $10,000 to $15,000 out of pocket, and there is no published data to support its efficacy.

Since many primary care doctors themselves are not familiar with even conventional extended COVID treatments, it can be particularly difficult to distinguish between what may effective and what is untested, according to Bell. She advises patients to inquire about the following topics:

  • 1 What published studies back up these assertions?
  • 2 How long should I give this treatment before I hope to see results?
  • 1 What adverse consequences might there be?
  • 2 Will the doctor who recommends the course of therapy collaborate with your existing medical group to track your progress?

Take a step back if you can’t find the answers to these queries, advises Bell.

Organizing Supplements

Numerous patients with lengthy COVID arrive at the Cleveland Clinic’s integrative physician Yufang Lin’s clinic with bags of supplements, she claims.

She claims that there is no information on them and that, in excessive doses, they might even be hazardous.

Rather, she closely collaborates with the Cleveland Clinic’s long-standing COVID centre to provide a full workup on each patient, which frequently includes screening for specific nutritional deficiencies.

According to anecdotal evidence, there are a lot of patients with lengthy COVID who are vitamin and mineral deficient, adds Lin. “We will recommend the right vitamin if someone is deficient. If not, we collaborate with them to implement some dietary adjustments.

The Mediterranean diet, which is high in fruits, vegetables, whole grains, nuts, fatty fish, and healthy fats like olive oil and avocados, is a typical example of a plant-based, anti-inflammatory eating pattern that falls under this category.

According to Bell, other vitamins some doctors advise for people with lengthy COVID are intended to alleviate inflammation, albeit there isn’t strong proof that they actually work. Coenzyme Q10, an anti-oxidant, is one.

However, a small preliminary research of 121 patients with protracted COVID who received 500 mg of coenzyme Q10 daily for six weeks observed no differences in recovery from those who took a placebo. The results were published in The Lancet this past August. The paper has not undergone peer review because it is still in the preprint stage.

Probiotics are yet another. Taking a combination of five lactobacillus probiotics for 30 days improved with long-term COVID symptoms as exhaustion and coughing, according to a small study from 2021 that was published in the journal Infectious Diseases Diagnosis & Treatment. But more extensive research is required to back up their application.

Omega-3 fatty acids appear to hold greater promise than the others. According to Steven Flanagan, MD, a specialist in rehabilitation medicine at NYU Langone in New York who works with patients with chronic COVID, these vitamins, like many others, may aid in the treatment of long COVID by reducing inflammation. Results from a study being conducted at the Mount Sinai School of Medicine in New York are not yet available, but it is looking into whether a supplement can help those who have lost their sense of taste or smell as a result of an infection.

Mindfulness-based therapies, such as tai chi and qi gong, may be useful as they mix a light workout with stress reduction, making them one of the few choices that have been demonstrated to benefit patients.

Both practises integrate meditation, which, according to Flanagan, not only lessens some of the anxiety related to extended COVID but also enables patients to refocus their thoughts to better manage their symptoms.

In patients recuperating from COVID-19, a 2022 study demonstrated that these two exercises decreased inflammatory markers and enhanced respiratory muscle strength and function.

All of my long-term COVID patients should consider participating in these activities, he says, because they are affordable and simple to find in their local area. “Even if it doesn’t relieve their long-term COVID symptoms, it has other advantages including enhanced strength and flexibility that can improve their general health,” the author writes.

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