R obert McCann, a 44-year-old political strategist from Michigan, sleeps for 15 hours a night and can't get out of bed. Sometimes he is so confused that he doesn't know what day it is.
The positive test for Covid took place in July of 2020. He had mild symptoms that went away within a week. After a few months, pain, confusion, and exhaustion returned and never left. The symptoms fluctuated between grin-and-bare-it and debilitation. He spent more than $8,000 out of pocket after a lot of doctor's appointments, scans, and tests. It can take him up to three hours to get out of bed on some days.
I don't want to say they don't care, because I don't think that's right.
When they were offered an appointment at the University of Michigan's Covid clinic, they were booked 11 months out. Without answers or possible courses of action from medical professionals, he has turned to online platforms, like the nearly 30,000-member forum on the website, where longhaulers share the supplements and treatment protocols they have tried. He is skeptical of miracle cures. He told me that he was desperate after 17 months of illness and no relief from doctor's visits.
Long Covid is not yet widely understood, but already has the dubious distinction of being a so-calledcontested condition, which is often applied to long-term illnesses. While I don't have long Covid, I received a diagnosis of a contested condition in 2015 after being left to fend for myself.
Up to 23 million Americans have symptoms that could be described as long Covid, and few are getting answers. Alternative providers and companies have created a cottage industry of long Covid miracle cures. Some doctors use controversial blood tests to identify the elusive disease. The benefits of skipping breakfast and undergoing ozone therapy are discussed by other practitioners. Desperate patients have gone overseas for stem cell therapy. According to analysts, alternative Covid therapies will be a reason for growth in the next seven years.
You just feel like you’re just part of a system that isn’t actually concerned with what you’re dealing with
Many long Covid patients like Colin Bennett of Southern California have already put their bodies on the line for a chance at feeling better through alternative therapies. After about two weeks of mild Covid symptoms, the former professional golfer woke up with a burning sensation all over his body. It felt like someone was on my chest. He said that he had numbness down his left arm. He thought he was having a heart attack. All of his tests came back normal when he went to the emergency room. He turned to private clinics after being prescribed only anxiety medication.
In less than a year, he has spent an estimated $60,000 of his savings on alternative therapies and doctor's visits that weren't covered by his Preferred Provider Organization plan. Bennett has tried everything from extracorporeal blood oxygenation and ozonation machine, which draws your blood out of your body through a needle stuck in one arm, to a hyperbaric oxygen chamber, which draws your blood out of your body.
He had stem cells shipped to him from Mexico and inserted into his body with the help of a doctor friend. None of it has helped.
Bennett said that he has no fear when he is like this. The difference between double-blind studies and anecdotal successes is meaningless for desperate patients.
It can be hard for longhaulers to find information about treatment options that have scientific backing. Sometimes that information is not available. Our supplement and alternative healthcare industries are not subject to much oversight in the US. Americans spend $35 billion on supplements alone. The Dietary Supplement Health and Education Act of 1994 (DSHEA) is a little-known law that makes sure that manufacturers of vitamins, minerals, amino acids, herbs, and botanicals don't have to prove their product. The deregulatory law was championed by former Senator Orrin Hatch of Utah, who had family ties to the supplement industry.
After DSHEA, the number of available products increased eight-fold. According to an industry trade group, Americans trust in the supplement industry has increased substantially during this global pandemic in which doubt has flourished.
Some doctors have prescribed FDA-approved drugs like Azithromycin and Ivermectin for off-label uses, even though they can't accept patients with insurance. A Mother Jones investigative report from earlier this year highlighted one particularly costly and controversial long Covid treatment, whose company IncellDX's eyebrow-raising approaches include offering medical advice and recruiting patients on YouTube and social media, failing to disclose financial conflicts of interest. The company claims 80% of their patients have shown improvement, but they haven't put their treatment protocol through a clinical trial.
I sympathize with people who are willing to try anything. I have paid for many controversial interventions, diagnostic procedures, and supplement cocktails since I became a patient. In the last seven years, I've contributed an estimated $12,000 to the supplements market and at least another $10,000 in out-of-pocket visits to doctors who would recommend a specific course of non-FDA-approved action. Money from the pockets of people like me is what keeps the industry afloat.
My medical problems began in earnest in 2012 when I was 19 years old with a bladder infection. Seemingly inconsequential at first, I took antibiotics only to find that the uncomfortable sensation didn't abate. Within six months, a series of cascading, disabling symptoms came in, including stabs through my back and hip, and a throbbing ache in my left shoulder. By my early 20s, I had grown accustomed to the icy, metallic dye of MRIs flowing through my veins, to being handed paperwork prodding questions I spent my waking hours trying to ignore.
I was told that there was nothing wrong. My test results were normal. One doctor at the Mayo Clinic told me that they don't have anything else for you. I think you should put a period at the end of that sentence.
A private clinic in a strip mall outside of Minneapolis gave me another chance at salvation after three years of exhausting my treatment options. The Minnesota Institute of Natural Medicine is located in a nondescript storefront, and I was led down a hallway to the office of Dr Chris Foley, who was a cool, confident mid-60s man with dark brown hair and a medium build. There were no blank stares of doubt, no glances at the clock, and no look at the desk.
When my bloodwork came back, I was told I had a disease. I was eager to learn about the recommended two year course of herbal supplements that I would take seven times a day. My insurance wouldn't cover it because it wasn't approved by the FDA. Many patients had a good luck with this protocol. I drew a heart on a brown paper bag after buying myself a bottle of wine.
I never got better. A combination of time, treatments, reducing inflammation, and a large degree of acceptance has given me a great deal of my life back. I don't use my cane anymore, I can even slam at a skatepark. I still have unexplained pain, as well as cardiac and pulmonary symptoms. I used to take about 70 pills a day. I have a bottle of wine in my basement.
I turned on my radio in the middle of a local news story about a beloved doctor who had practiced alternative medicine. The doctor died the week before Covid-19, the reporter said. He wasn'tvaccinated. In the months before his death, he used his medical practice to push false information about masks and vaccines. I knew the name of the doctor before the reporter could even say it, because I left his practice late in the year.
The vaccine would likely make Covid worse, that masks offered little protection and were dangerous, and that the seaweed extract carrageenan and Iver was as effective as the vaccine, were some of the claims made by the clinic. He prescribed Ivermectin to multiple patients despite the fact that the medication had not been shown to have any benefit in treating Covid-19. He referred to Covid as a "pandemic" in March of 2021.
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I didn't feel surprised by his conspiratorial leanings because of his long history of vaccine skepticism. I felt sad that my medical journey left me and so many others without a place to turn but to doctors who may be prone to flirt with conspiracy.
When people have been let down by the healthcare system … alternative routes may provide hope and comfort
According to Dr Jessica Jaiswal, assistant professor of Health Science at the University of Alabama, medical falsehoods may be particularly dangerous coming from alternative medicine doctors, who may hold trusted esteem in the eyes of sometimes-desperate patients.
According to medical journals, craving more time with a doctor and feeling that a doctor wasn't interested in their case are among the reasons patients seek out alternatives. It happens disproportionately to people of color and women who are less likely to be treated for their pain. People living with chronic illness are more likely to seek alternative medicines.
Renee is no stranger to medical conditions and treatment. She was diagnosed with Fibromyalgia in the year 2019. She said she never felt satisfied with the small scope of her treatment. When she began showing signs of Covid in 2020, she was not surprised by the response.
After visiting New Jersey in February of 2020, she lost her sense of smell. She had trouble breathing and coughed so much that she had to use her bladder. She didn't get a test because her illness occurred many weeks before the tests were available. After two months of her symptoms, her heart started pounding rapidly in her chest, and her vision became blurry and hazy, making it difficult to read or drive. She couldn't eat, couldn't sleep, and had bouts of rage. She fractured her knee when she fell and started walking with a cane. In the summer of 2020, when she suggested to her doctor that her symptoms might be remnants of Covid-19, she was referred to a psychologist by her doctor.
She saw the same response from other doctors and specialists. The formal medical system was the reason why McGowan stopped seeking care. Unable to afford many of the costly alternative treatments she saw other longhaulers discussing online, she spent nearly a year with Youtube and Twitter as her primary care providers, experimenting with different herbs and supplements. After her first symptoms, she was able to see a rheumatologist, who prescribed a low dose of an opiate blocker that has been shown to mitigate chronic pain. That medication has allowed her to phase out her use of the over-the-counter botanical product, which she began using after she had very adverse reactions to the only prescriptions her doctor recommended for her pain: antidepressants.
In her years in the depths of Covid, she has seen practitioners peddling alternative miracle cures that she is leery of. There isn't any malice on the part of the alternative providers who may have left mainstream medicine after seeing their patients in mainstream medicine.
Medicine is a series of individualized games of trial and error. Allopathic medicine is not all-knowing, and some traditional and plant-based knowledge is provably curative. In today's minimally regulated alternative medicine industry, patients who feel like they have hit walls in allopathic clinics are often met with a plethora of healing products. The potential for healing appears to be limited by our pocketbooks, between costly supplements and a host of non-FDA-approved medical interventions that doctors can legally recommend. You can't blame patients if we have the privilege.
For years, many of us with chronic and contested illnesses have felt we have nowhere to turn but to minimally regulated, expensive, and potentially dangerous treatments. Thousands of longhaulers are joining our ranks. I want to warn them about the messy road they are about to go down, to encourage them to do everything they can to find a mainstream doctor who is willing to try to treat their symptoms, even if those doctors can't. At the same time, I'm trying to find treatment ideas for these patients. I make unconscious mental notes about the treatments they have tried. Despite spending a small fortune and years of my life on largely unfruitful alternative treatments and a theoretical dedication to evidence-based medicine, I still struggle and sometimes that struggle threatens to supersede my convictions. I know that the parameters have changed. I don't think I will ever be done with this disease. I still hope. Not for a miracle cure, but for patients of illnesses like Covid and Lyme to have their medical concerns believed and addressed by doctors who can accept our insurance. For treatments that are backed up by statistical evidence and double-blind studies with large sample sizes, and if research finds them truly effective, those treatments that are currently available only to those who can afford expensive out of pocket costs. I hope for continued investment in Covid research. Hundreds of our friends, our neighbors, and perhaps our future selves are at risk if we don't have it.
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