Georgia Today: For long COVID sufferers, it's a pandemic without end

As the worst of the omicron surge fades around the country, health officials worry more Americans may end up with long COVID. The condition affects roughly one-third of COVID-19 survivors. For this episode we hear from a Georgia mother of two who is living with long COVID.

RELATED: As cases of kids with long COVID rise, one mom warns: 'It can happen to literally anyone'

TRANSCRIPT

Elizabeth Florio, Atlanta-based journalist: "Everyone says the goal is for COVID to be endemic and learn to live with it and and I don't know if I can live with it. It can feel hopeless. I'm just really trying to take it day by day."

Steve Fennessy: Most weeks on Georgia Today, we rely on journalists to take us behind the scenes of stories they're reporting. But sometimes the reporter is the story. This week, Elizabeth Florio, an Atlanta-based journalist, joins me to talk about her ongoing struggle with long COVID.

[News tape] PBS NewsHour: Health officials worry many more people could end up suffering from so-called long COVID, the mysterious ailment that can affect the body and the mind for months — sometimes longer — after an initial infection.

Steve Fennessy: The condition affects roughly one-third of people who've been infected with the coronavirus. Elizabeth is a mother of two young children and always considered herself active and healthy. So for her, long COVID has been life-altering with no clear end in sight. Elizabeth, thanks for joining me.

Elizabeth Florio: Thanks so much for having me.

Steve Fennessy: You and I spoke in preparation for this interview a few days ago and you mentioned that one of your worst days in all this occurred back in 2020, around Labor Day weekend. What happened then?

Elizabeth Florio: Yes, Labor Day weekend 2020 was very memorable for me. It was kind of the culmination of a few months of strange, off-and-on symptoms I'd been having. I'd had this rash that appeared on my knees and elbows, some sort of strange sensations in my legs that came and went, like I might be just out on a walk with the kids and my legs would suddenly go cold. By August 2020, things had started to get pretty bad. I was getting more muscle weakness, to the point that I could barely walk up the stairs in my house. It just felt like I was lifting these massive weights up the stairs, and I was starting to get a lot of shooting nerve pain running the length of both arms. At the same time, I had seen a neurologist in August and I had had an MRI to look for markers for MS — multiple sclerosis. And the Friday before Labor Day weekend, the neurologist called to give me the good news that my MRI was clear: I didn't have MS. I specifically remember putting him on speaker and having the call, you know, holding hands with my husband because I think we all thought I had MS. And we hung up the phone and I actually ran a celebratory errand to Target. On the way driving to Target, I was having difficulty keeping my leg pressed on the brake pedal at red lights. And that was scary and I just remember my heart sinking because I realized that something was still very wrong. So I went to the ER. My husband and kids actually dropped me off at the Northside Hospital emergency room.

Steve Fennessy: COVID hadn't really crossed your mind as a potential cause of these problems?

Elizabeth Florio: No, not at all. No. And so it wasn't until actually I went through a battery of tests in the emergency room that day, including another MRI, a full brain and spine MRI, and everything came back clear again. And the ER doctor was chatting with me after. And he kind of shared this anecdote. He was like, "I have some colleagues who've had COVID and they've experienced the muscle weakness and nerve pain. So maybe that's what you have, too." And so he was kind of the first person to put it on my radar as a possible culprit.

[News tape] PBS NewsHour, Dr. Jason Goldman, infectious disease expert at Swedish Health Services in Seattle: We're seeing a whole host of symptoms in patients after they have COVID-19. And some of the most common symptoms are fatigue, sometimes muscle or joint pains or other aches and also respiratory symptoms, cough, shortness of breath. These are some of the most common, but there's also other symptoms like depression and anxiety that patients are suffering from following a diagnosis of COVID.

Steve Fennessy: But you hadn't had COVID, right?

Elizabeth Florio: Actually, I wasn't sure. I guess it was early March of 2020. Our house had what seemed like it could have been COVID. It was a slow moving respiratory virus that started with a fever and ended with a bad cough, but there was no testing available at the time. So I was always wondering if we had had COVID. And my antibody test came back negative. So I thought, "OK, well, I guess that wasn't COVID."

Steve Fennessy: Not knowing what's going on with your body is sometimes more scary than knowing what is going on. What was your anxiety level like?

Elizabeth Florio: Oh my gosh. I mean, it was incredibly just frustrating because I'm a mom of two little kids, you know, they were 3 and 5 at that point. And aside from just anyone's personal anxiety going through this, you feel like you have a duty to your children to figure it out and get better. So I kept pushing, you know, to the extent that I had money and energy. I saw, in 2020. two neurologists, two dermatologists, two ER visits; I saw a gastroenterologist, a rheumatologist, an allergist, a functional medicine practitioner and an acupuncturist, and I had just a battery of tests, including the MRIs I mentioned, EMG and nerve conduction test, an upper endoscopy. I did a biopsy of my rash. I mean, I was always relieved to get a normal result, for sure. But I was beyond frustrated.

Steve Fennessy: So you get test after test, results come back as being within a normal range. And so what did the doctors say as they're going through these test results with you?

Elizabeth Florio: I had some conversations about, "OK, maybe it was COVID or some other mysterious autoimmune condition, but until things really get worse and you show hard and fast test results, there's nothing we can do." But fortunately I was able to find this amazing Body Politic support group. So Body Politic is actually a Slack group of long COVID sufferers the world over. And it was amazing; it was like looking in a mirror because not only are there people with symptoms matching mine — and other symptoms I didn't have, too, like a lot of respiratory struggles; a lot of people were having cognitive difficulties.

[News tape] ABC News, long COVID patient: Serious fatigue, random headaches and then brain fog, which you know, is probably the most troubling of all the symptoms just because, you know, to be sitting there and a train of thought and have —all of a sudden, you're just lost.

Elizabeth Florio: But also people with my exact muscle weakness, even like really specific sensations that I was having. Like, there's this horrible thing that many long haulers know about called internal tremors. And it just feels like the internal framework of your body is shaking, like there's a little earthquake going on in your body. And the common thread of everyone's stories, no matter what symptoms they were having, was just that they were stumping their doctors.

[News tape] PBS NewsHour, Diana Berrent, Founder, Survivor Corps: And the more we realize that it is also a neurological disease, it really should put the fear of God into everybody.

Steve Fennessy: Next, the knowledge and comfort that comes from finding others who are also battling long COVID. This is Georgia Today.

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Steve Fennessy: You're listening to Georgia Today. I'm Steve Fennessy. My guest is Elizabeth Florio. The pandemic started really around February, March of 2020, and so you were at the ER around Labor Day weekend of that same year. So when did you find this community of like-minded sufferers? When was that?

Elizabeth Florio: Shortly after that ER trip. So probably fall 2020. I mean, I was learning about long COVID at the same time really everyone else in the world was.

Steve Fennessy: And was it when you found this community that it that that you did, you kind of diagnose yourself and say, "Yeah, this is me"?

Elizabeth Florio: Exactly. I totally diagnosed myself, and I even took screenshots of some of the testimonials I was reading and sent them to my neurologist. And he kind of said, OK, that's interesting, but you don't have a positive antibody test, so there's nothing we can really do. And I have learned that without a hard and fast test — you know, which is what medicine relies on — you don't get taken seriously by your doctors and even friends, and my own family, I think, thought I was a little crazy.

[News tape] ABC News, long COVID patient: We don't have any history. We don't really know anything. Doctors in general are used to having answers to everything, and I haven't found one yet that's willing to admit they have any clue.

Steve Fennessy:To not have your your concerns and fears validated must feel like you're almost being gaslit.

Elizabeth Florio: Oh, I mean, you're absolutely right. I would gaslight myself sometimes. You know, I think the people that I loved the most and whose opinions mattered the most to me, including my husband, supported me and honestly, just the Body Politic group. I can't say enough about it because we could share medication tips and that sort of thing, but we could also sort of just relate to each other and empathize when someone else had yet another disappointing doctor visit or another case of being doubted.

[News tape] ABC News, long COVID patient: The people that haven't had it or aren't suffering from it are quick to say, "Well, you know, it's all 'positive attitude' and blah blah blah." This is real.

Steve Fennessy: And as you've talked with with the physicians, as they're testing you and they're not giving you answers, what questions are you coming up in your own mind about your symptoms that — that feel unanswered?

Elizabeth Florio: You know, the symptoms relapse whenever my immune system is really taxed and/or I'm just worn down. So that seems kind of like a classic autoimmune disease. And the hair loss and the rash and other sort of inflammatory symptoms seem kind of autoimmune in nature. There's a lot of talk about vascular issues. One of the theories right now they're looking into is micro clots harboring these sort of inflammatory particles and causing all sorts of issues. And that resonates with me too, because even after I've gotten through these worst periods of numbness and nerve pain, I've never been able to do cardiovascular exercise. I haven't been able to go for a jog in two years because anything that really gets blood flowing to my limbs ends up causing, like, horrible twisting pains, you know, 15 to 30 minutes later. It's really interesting because you have a lot of just regular people who are reading these studies and trying to understand immunology in a way that we aren't trained to. But by and large, the patients in the long COVID community know more about their disease than many doctors do.

Steve Fennessy: The American medical system, at least, seems very geared towards "You have this specific problem." But when we can't identify Problem or Factor A, then we're kind of lost, right?

Elizabeth Florio: Absolutely. And that's completely been my experience. You know, our medical system in this country is so specialized — and — and understandably so. I mean, a lot of the conditions and diseases that, you know, specialists deal with are incredibly complex. But when you go to see a neurologist for something like what I experienced or a rheumatologist or a dermatologist, you know, they have certain conditions, you know, that they know exactly how to diagnose and they know exactly the markers to look for. And if you don't fit any of those markers, they have nothing for you. My one hope at the silver lining of of all of us longhaulers out there is that, you know, in a way we kind of open up the — our understanding, collective understanding, of immunology and a lot of these strange post-viral and auto — autoimmune conditions that are just very poorly understood but a lot of people suffer from.

[News tape] PBS NewsHour, Dr. Jason Goldman, infectious disease expert at Swedish Health Services in Seattle: This syndrome of long COVID is complex. It affects nearly all organ systems, and there's also an overlay of psychosocial factors and the collective trauma we've been experiencing. So it's very hard to tease the biology out with such a complicated syndrome. But that's what we're intending to do.

Steve Fennessy: The medical community is starting to catch up and there are, you know, institutes and divisions of hospitals that are starting to look at long COVID. Are you part of any study or can you tell us about anything that might be happening around here?

Elizabeth Florio: There are a couple of post-COVID clinics in Atlanta. There's an Emory post-COVID clinic, as well as a Piedmont one. And you know, I'm actually waiting to have my post-omicron follow up appointment now in a couple weeks with my positive test, and I'm going to come out swinging like, "OK, I've got my positive test. Now you need to help me. What can you do for me?"

Steve Fennessy: And you said that you were recently infected with the omicron variant? Do you know it was omicron?

Elizabeth Florio: Actually, I don't. I don't. It was just that it was mid-January of 2022, and that was like the 99% in circulation.

[News tape] CBS News: Omicron is omnipresent: The CDC announcing today it now makes up an estimated 95% of all cases nationwide.

Elizabeth Florio: And truly, it wasn't until I got omicron almost two years later last month that those same symptoms came crashing back and I really got confirmation.

Steve Fennessy: And what were those symptoms like?

Elizabeth Florio: I got, you know, flu like response of a couple of days of fever and then into a bad cold. The rash that I mentioned, cold legs evolving into the muscle weakness and the muscle weakness wasn't just my legs. At its worst, it was top to toe. So it included like my fingers moving slowly and it made typing difficult. I kind of felt like there were days when it felt like I was moving all of my limbs through water. But then I dealt with a lot of just shooting nerve pain for another few weeks and Day — about Day Eight or Nine, I started, at that point I was starting to feel better from those symptoms But I got the deja vu leg weakness — sort of these dead heavy legs. And that was really a gut punch because I felt like I was starting over at square one.

Steve Fennessy: We're now about a year into vaccinations. When they became available early last year. Were you excited about getting on or were you concerned about it and did you?

Elizabeth Florio: I'm very pro-vax in general, and I did ultimately get the Moderna. Unfortunately, it did kick up a lot of the same neurological symptoms that I had had the year before and had kind of subsided: muscle twitching, muscle pain, headaches, internal tremors. So when the booster discussions came around six months later. I decided not to get it. And I have to just say that I don't advocate for that. Absolutely, the infection is riskier than the vaccine. And there are also stories of long haulers who say that their symptoms resolved after they got the vaccine. So I certainly don't ascribe my experience to all COVID long haulers. But I do feel like it's important to be open about it, because, you know, recognition of long COVID started with patients sharing their stories. And so if I can stump for more research into vaccines for — for long haulers in particular, I would love to because we are definitely among those that that need that protection the most.

[News tape] PBS NewsHour, Diana Berrent, Founder, Survivor Corps: Our members are suffering. They need help. They need treatments. They need therapeutics. And we need to make sure that science is moving at warp speed to treat these people.

Steve Fennessy: So how are you feeling today?

Elizabeth Florio: Better and worse. So I feel energy-wise back to my old self, but my legs are just not cooperating. They're just jelly legs. And you know, this is how it all kind of started back in 2020 with the muscle weakness before the nerve pain then set in. And I don't know that it's going to take the same course this time. I certainly hope it won't be. I'm feeling pretty discouraged.

[News tape] CBS News, Atlantic's science writer Ed Yong: Why that infection in some folks leads to these long, recurring, relentless symptoms is still, I think, a mystery. It's one that a lot of scientists are turning their attention to, but, I think, not quickly enough.

Elizabeth Florio: But I'm certainly hopeful that the research is going to get there to help people like me live normal lives and be there for our kids. The story that comes to my mind that still makes me sad is, you know, it was fall and the leaves had just fallen. This fall, 2020 I guess, my kids, who were 3 and 5 at the time, wanted a leaf pile and kind of against my better judgment because I knew what cardio exercise did to me I raked for 15 minutes and raked them a great leaf pile because I wanted to give them that experience and they jumped in it and it was super fun. And then I went into the house and just got hit by these horrible twisting pains in my arms and hands. And I just remember sitting there at the kitchen island and feeling so depressed because I couldn't even rake a leaf pile for them.

Steve Fennessy: But you did it.

Elizabeth Florio: I did. They had that leaf pile.

Steve Fennessy: We seem to be on the down slope from the omicron spike. What are your hopes about us emerging from all of this?

Elizabeth Florio: I think it's really important to figure out if, as my experience attests, there are people with long haul COVID for whom even mild COVID can be a huge health setback. This notion of what does living with COVID mean? Because the status quo right now with our vaccines and boosters every few months and constantly shifting variants does not seem very hopeful to me.

Steve Fennessy: Elizabeth, thank you so much for joining us. I really hope that you emerge on the other side of this soon.

Elizabeth Florio: Thank you so much, Steve.

Steve Fennessy: Last June, the National Institutes of Health announced the creation of the Recover initiative to study how and why some people with past COVID infections experience some of the symptoms that Elizabeth discussed in this episode, as well as others, like loss of taste and smell. With research spanning 30 institutions and close to a half billion dollars in funding, Recover's work may lead to some answers and, ideally, effective treatments. You can find out more at RecoverCOVID.org. Georgia Today is a production of Georgia Public Broadcasting. Jess Mador is our producer. Our engineers are Jesse Nighswonger and Jake Cook. You can keep up with Georgia Today by subscribing to the show at GPB.org. Thanks for listening. We'll see you next week.