Long COVID patients turn to risky — and expensive — alternative treatments

CATHY WURZER: I'm Cathy Wurzer and this is Minnesota Now on NPR News. Let's talk about Long COVID. It's a relatively new concept in the medical world. Doctors don't have all the answers about the disease, its symptoms, or, most importantly, its treatment yet.

It's caused a feeling of desperation that has led some to seek alternative and risky expensive health treatments just for a chance to feel like themselves again. That story is familiar to many who have suffered from mysterious chronic illnesses too, like Katie Thornton. Katie is a freelance multimedia journalist and she's been reporting on chronic illness and the popularity of risky Long COVID treatments, the most recent article in The Guardian. Katie, welcome back to the show. How have you been?

KATIE THORNTON: Kathy, thanks so much for talking with me. It's great to be back. And all things considered, I think I've been doing pretty well.

CATHY WURZER: Good. Good. I'm glad to hear that. Hey, let's get some numbers on the table. Any idea how many people are now dealing with Long COVID?

KATIE THORNTON: There's an estimate that up to 30% of people who have COVID have some sort of lingering debilitation or lingering illness-- some sort of symptoms. And with 30% of people having some lingering symptoms, it's pretty common. I'm sure everybody listening to this show probably knows somebody who is dealing with something lingering from an infection.

CATHY WURZER: Yes. Yes. I'm sure that's true. And these are strange symptoms. They can be strange symptoms months after the initial infection, as you know. Who did you talk to to get a fuller picture of the problem?

KATIE THORNTON: I had the privilege to speak with a number of folks who are dealing with Long COVID who were willing to share their stories with me. Somebody who I think really paints a picture of where I think a lot of doctors are falling short in dealing with long COVID patients is a woman. She's 52 years old. She lives in a small town in South Carolina.

She had lost her sense of smell in mid-February 2020 after a visit to New Jersey-- so very early on. But two months after her symptoms began, she started having just very rapidly pounding chest. Her vision was so blurry that she couldn't see, she couldn't drive, and she had just these wild sort of changes in mood that really frightened her. When she went to a doctor and suggested that this might be sort of the fallout from a COVID infection, she brought a printed out study to the appointment, the doctor didn't look at it and referred her to a psychologist, and talked about anxiety, and talked about depression.

CATHY WURZER: Is this an instance where you wrote about medical dismissal-- you used the term medical dismissal-- are symptoms being dismissed by some doctors which leads the patients to seek alternative treatments?

KATIE THORNTON: Yeah, absolutely. And certainly not all doctors, but in speaking with Long COVID patients, this is something that happened repeatedly to a lot of people who I spoke with. And Long COVID is, in many ways, a so-called contested illness.

So when an illness is long-term and allopathic medicine can't measure or find the physical evidence of a patient's reported symptoms, because of that, some doctors, not all, deem those illnesses not to be real. Allopathic medicine talks about symptoms and signs.

Signs are these medically measurable, identifiable indicators, whereas symptoms are sort of subjective descriptions of what's happening that patients give to their doctors. But a lot of doctors don't necessarily treat based on symptoms. But in this instance with Long COVID, that's often all people have to go off of. So when you end up meeting a doctor who is only looking at signs and not looking at symptoms, many people are dismissed.

CATHY WURZER: Which has got to be frustrating, obviously, because you don't feel good. You're trying to feel better. You're trying to get back to your normal self. So what are these folks looking for? What alternative treatments have they been asking for?

KATIE THORNTON: I think that when folks have felt that they've run into walls within the medical establishment, there's a few different places they turn. I spoke with a lot of people who turned to the internet. And there's also a whole wellness industry that is made to answer people's questions that they have not necessarily gotten in the medical establishment.

And as a journalist and also just as an individual, that was concerning to me personally, because that sort of opens up this situation that's kind of ripe for exploitation. In the US, there is just a wildly deregulated supplement market and wellness industry. Every year, Americans spend about $35 billion on supplements alone.

And a lot of why that's possible is because of this law called DSHEA. It's the Dietary Supplement Health and Education Act of 1994. And basically, it ensured that companies who manufacture vitamins, minerals, amino acids, herbs, and botanicals don't have to prove that their products are effective. They actually barely have to prove their safety.

Rigorous safety checks usually only happen if there's a serious incident like a severe illness or even a death. After this law was passed, the industry just totally exploded. We think about all of the medical mistrust that has been occurring throughout this pandemic, and at least, according to an industry trade group publication that I read, American's trust in the supplement industry has actually increased during this global pandemic.

Not all of these are dangerous. Certainly, there is potential for danger. But what I get really concerned about is that these are immensely, immensely expensive products when you start to add them up. And they can also give people a sense of control-- that if they're told something is going to help for certain things that they're experiencing, they may delay other care.

CATHY WURZER: Who did you talk to about their experiences getting alternative treatments?

KATIE THORNTON: It really ran the gamut. I spoke with many people who turned to online kind of support groups for help. I spoke with somebody who, after spending nearly $10,000 on testing that his doctor had prescribed, decided to turn to the internet. He said he was skeptical.

But he also said that he was really desperate and he joined a Reddit group for people who were suffering from Long COVID. He said, I'll just be frank-- if someone has mentioned on the subreddit that it's helped them, I've probably bought it and tried it. So he had spent hundreds of dollars on these supplements and hadn't really had any change in his symptoms.

I spoke with somebody else who had spent an estimated $60,000 out of pocket in, I believe, under a year of trying to manage their Long COVID symptoms. And this ranged, everything from trying different supplements to trying new therapies. He contacted a doctor friend who imported stem cells from elsewhere to the US and personally administered them.

And this is the kind of thing that makes me quite concerned is that very few vitamins, for example, and supplements are dangerous in really large doses, at least as far as we know. Some of them can be. But there are other things, like doing your own stem cell treatment, that can be really risky.

CATHY WURZER: With more individuals being diagnosed with Long COVID, and that's what the experts say we're going to see, do you see this trend ebbing at all or just increasing?

KATIE THORNTON: The sooner that doctors can take this seriously and regard it as something that, even if we may not have the signs to identify and diagnose it, something that is real, because so many people are experiencing it. But really, the issue is also that it doesn't just take attention and will, it takes money, and it takes studies, and it takes research.

It is possible that some of the alternative treatments that people are being directed to will end up proving helpful. But you have to have those studies. You have to have double blind studies. You have to have large sample sizes. People deserve that.

CATHY WURZER: You, yourself, have had personal experience with chronic illness. So was it difficult to do this story with your background?

KATIE THORNTON: It was difficult to do this story. But the reason I wanted to do this story is because I have seen so many people feel pushed to cures and treatment options that don't have a lot of scientific backing. And I have immense empathy for that, because I have done that.

I did that for many years of my life. I have a sort of similarly dubious, so-called contested illness. I was diagnosed with Lyme disease in 2015. And I repeatedly ran into walls within the medical establishment.

I was told that anxiety was common in young women, so that was probably what it was-- all of these different pains and strange experiences that I was having, repeatedly was told that nothing was showing up that would indicate that anything was wrong with me. And when I kept running into walls within the medical world, somebody else will be there to answer those questions if doctors can't answer those questions or sort of shut people out.

And there is a whole industry set up to do that. And some of it is very well-intentioned. Some of it does have some scientific backing. But it also is an industry, and there are people who may have a degree of malintent or may not be the best informed about the medicine, because it can be a very, very profitable industry as well.

And when you're left to fend for yourself in this sort of murky, unregulated wellness industry, it's often really difficult to tell what has scientific backing and what doesn't. What was very revealing to me was that even as I was talking with Long COVID patients, many of whom have tried a lot of the same treatments that I have tried at different points in my life, at the same time that I have this sort of well-founded, researched skepticism, I suppose, I notice myself sort of subconsciously taking note, like, what have they tried that I haven't tried yet? And even as much as I am informed about this industry and informed about the importance of these studies, there's still something in me that sort of rears its head that just wants to try almost anything to feel better.

CATHY WURZER: It's an interesting story, Katie. A lot of good information too. Thank you so much for the time.

KATIE THORNTON: Thank you so much for talking with me about it. I appreciate it, Cathy.

CATHY WURZER: Katie Thornton is a Minneapolis-based multimedia journalist and National Geographic Fulbright Fellow. You can find a link to more of her reporting on our website, nprnews.org.