After feeling deep, aching pain in her right lung for two years following COVID-19, Lily Godsoe of Half Moon Bay is grateful to the woman who made the anguish go away.
Her savior wasn’t the doctor who peered at her X-rays and prescribed inhalers that didn’t help. It was the Costco vendor who sold her an elixir of turmeric, extra-strength, on sale for $20.
Godsoe never got her name. But in April the vendor prescribed three daily teaspoons of the orange liquid — always chilled. In a week, Godsoe was a believer.
“I realized that I felt well. It was really shocking,” said Godsoe, 54, an interfaith minister so debilitated by long COVID that she had to quit her job. “I had forgotten what it felt like to feel normal.”
Godsoe didn’t know that the Food & Drug Administration had its eye on the turmeric maker, Quten Research Institute in New Jersey, whose “therapeutic anti-inflammatory” claim for the plant-based product earned a rebuke in 2020 for “misbranding.”
But it might not have mattered. To Godsoe and thousands of other long-COVID sufferers whose doctors have been unable to relieve their mysterious symptoms, such unproven, poorly tested, or just off-label remedies provide hope and — sometimes — help.
The names read like cure-alls touted by 19th-century hucksters: hyperbaric oxygen, intravenous ozone, herbal tollovid, the Patterson Protocol. Some are under serious study by scientists seeking verifiable treatments. Others could be quackery, or even harmful.
“There’s always the danger that people will try things they shouldn’t,” said Lisa McCorkell of Oakland, a co-founder of the Patient-Led Research Collaborative, a nonprofit seeking to speed up the search for good long COVID treatments.
Colin Bennett, 34, has already spent a remarkable $100,000 on untested therapies and do-it-yourself remedies in hopes of conquering the barrage of post-viral symptoms that turned the financial analyst and golfer into a de facto old man since he got the virus a year ago.
But he only went rogue — even flirting with the notorious horse de-wormer, ivermectin — after doctors at Stanford, the University of Southern California, three University of Californias and various ERs failed to alleviate his ailments: brain fog, maddening tinnitus, varicose veins, hair loss, rapid heartbeat (a common long COVID symptom called postural orthostatic tachycardia syndrome, or POTS) and chest pain that, at its worst, “felt like someone was stabbing me with a super-heated poker.” The list goes on.
“I never had any problems before COVID,” said Bennett, of Los Angeles.
His desperation led him to drop $1,500 on hyperbaric oxygen therapy to rejuvenate his tissues. A double-blind Israeli study of 73 long-COVID patients, published in July in the peer-reviewed journal Nature Scientific Reports, suggests this can actually work. Researchers found much improved brain function in the half who got oxygen.
Bob Lambertsen, safety director, monitors a patient in a hyperbaric chamber at Hyperbaric Medical Services on August 25, 2022 in San Francisco.
Lea Suzuki/The ChronicleAt Hyperbaric Medical Services and Wound Care in San Francisco, patients lie in a clear chamber with oxygen equal to scuba diving at 30 feet — then watch Netflix for 90 minutes. Patients often have vascular damage from diabetes, said Dr. Jamie Bigelow, the pulmonologist who runs the center. Oxygen can stimulate new growth in the tiniest capillaries.
But it can take many sessions. Each now costs $500 and isn’t covered by insurance. Of three long-COVID patients who sprang for them, a man with neuropsychological symptoms needed 60 sessions, Bigelow said. That’s $30,000. A man with POTS benefited after 10 tries, while a woman with the same condition found no relief after 20.
Bennett went 10 times in Southern California. “I didn’t really notice much,” he said. He then tried popping pineapple enzyme pills to “help with blocking the ACE2 receptors” that are implicated in opening cell doors to COVID-19, and took N-acetyl cysteine, a supplement popular with long-COVID sufferers and sold as NAC. It promises “free radical protection.”
In November, Bennett heard about exosomes, which carry molecules between cells in service of the immune system. A friend bought Bennett a $5,000 infusion when he was in bad shape.
“He wanted his golf buddy back,” Bennett mused. But the exosomes didn’t help. Nor did the electromagnetic therapy, though he slept better for awhile.
“When you’re this screwed up, you try everything,” he said. Even stem cells. At Christmas, Bennett spent $5,000 on 500 million of them that a doctor friend picked up in Mexico. “Sounds kind of shady,” he admitted. “I was so desperate that I didn’t care if it killed me.”
Bennett’s tour de treatments wouldn’t have been complete without a visit to the one doctor in the Bay Area, perhaps the country, who claims to cure nearly all long COVID patients.
“Eighty-five percent of patients get better. Maybe more,” said Dr. Bruce Patterson, who developed the “Patterson Protocol” at his San Carlos company, IncellDX, Inc.
There are no peer-reviewed studies to verify this. But that hasn’t stopped long-COVID sufferers — 30,000 of them, Patterson says — from requesting test kits, virtual consultations, and scores measuring the severity of five common symptoms.
Yet everyone gets the same two drugs: A cholesterol-lowering statin and Maraviroc, an HIV anti-viral. “Six to 12 weeks” is all it takes to get better, he claims. Patterson, an associate professor at Stanford University in the 2000s who directed a virology lab there until 2011, works with other doctors who prescribe the drugs.
One is Dean Mitchell, a New York immunologist who has monitored 20 people on the Patterson Protocol over six months. “I’m cautiously optimistic that some of have improved,” Mitchell said. “I’m watching and waiting.”
One happy customer referred to a reporter by the company, Susan Pi of Oakland, said she was so pleased that she canceled her appointment at Stanford’s long-COVID clinic. A ghost writer who got sick in 2020, Pi, now 40, suffered fatigue and post-exertional malaise for a year. “I’m fully recovered, thanks to the Patterson group,” she reported.
Colin Bennett, 34, who spent about $100,000 on everything from stem-cell infusions to the animal de-wormer ivermectin to try to cure his many long COVID symptoms, is seen here in an Orange County emergency room last year during an especially difficult period. His do-it-yourself methods worked no better than standard medical therapies, he said.
Courtesy of Colin BennettBennett, though, quit halfway through. “I didn’t think it was helping,” he said. Insurance covered most of the protocol, but he’s out $1,000 for the tests. Now he takes only fistfuls of ginkgo biloba pills (a plant-based supplement reputed to sharpen thinking) and has improved enough on his own to return to work part time.
Dr. Lekshmi Santhosh, co-director of UCSF’s post-COVID clinic, cautioned against embracing unproven treatments. She offered a car analogy: If your car’s brakes failed, would you fix them with a new steering wheel?
“Because long COVID encompasses so many different symptoms, one size usually doesn’t fit all when it comes to treatment,” Santhosh said, acknowledging that research is “frustratingly slow.”
McCorkell, of the Patient-Led Research Collaborative, agreed. “We try to push for things that have been researched or validated by the community,” she said. “But it’s a tricky balance.”
Anisha Sekar of San Francisco ran ultramarathons before getting COVID two years ago. Now 31, she needs a wheelchair to go through the airport.
The tech entrepreneur says there is “exactly one” doctor who has earned her trust because she is open to trying novel but safe treatments, including prescriptions approved for other purposes. Such “off-label” uses are gold in the long-COVID community.
Sekar takes four that have helped, despite their having been approved only for narcolepsy, heart ailments, muscle weakness and allergies.
She gets most of her treatment ideas from long-COVID forums on Reddit and Body Politic. “I keep my ear to the ground,” she said. “And if I hear it enough, I’ll take it to my primary care physician and she’ll chime in with, ‘the science makes sense,’ or it doesn’t.”
Her nine over-the-counter remedies include, yes, turmeric.
Godsoe, whose relentless lung pain vanished after she began sipping turmeric, also credits six months of acupuncture with calming other post-COVID symptoms, from rapid heartbeat to joint pain. The needle treatment — in her arms, legs, torso and head — cost $140 a week.
“I really had given up hope that I was ever going to feel OK,” Godsoe said, her voice filling with emotion. Acupuncture wasn’t a total cure. But making her own treatment choices has felt therapeutic in itself.
“A sense of wellness came over me,” she said. And as symptoms eased, “I was so elated.”
Nanette Asimov is a San Francisco Chronicle staff writer. Email: nasimov@sfchronicle.com Twitter: @NanetteAsimov