When Julie Copaken got sick with Covid in early March, she believed it was just a bad flu.
“I was achy in a way I’ve never been achy before. I had diarrhea, I had horrible headaches, I was very fatigued, like I couldn’t get out of bed fatigued,” Copaken, 48, of Jacksonville, Fla., said in a phone interview. “But I didn’t have any breathing issues, which is what they were talking about at the time.”
She recovered, but after a relapse in May she finally got tested. She was negative for the virus but positive for Covid antibodies.
Copaken continued to get sicker through the summer, but did not know why.
“I started having heart palpitations,” Copaken said. “I’m a runner, and I had been training for the Boston Marathon. And my legs were weak. My heart rate was soaring.”
It wasn’t until September that Copaken saw an endocrinologist who diagnosed her with Graves’ disease, an autoimmune disorder that attacks the thyroid. It commonly causes tiredness, muscle weakness and rapid heartbeat — all things Copaken experienced.
“I had blood work,” Copaken said. “I had a thyroid ultrasound and a thyroid nuclear scan. What’s been interesting for me was a lot of the Graves’ symptoms are also [Covid] long-hauler symptoms.”
The long and varied list of symptoms reported by Covid patients implicates every system in the body, including the immune system. A growing number of people who have had the illness for a long time — like Copaken, they call themselves “long-haulers” — are finding that after Covid, they were diagnosed with autoimmune diseases — conditions where the body attacks its own tissues. And now, they’re asking if the virus is to blame.
After Covid, disparate symptoms with one cause
Keri Kae Gebo, who works for a nonprofit in Washington, D.C., first came down with a fever at the end of February but she didn’t realize it was probably Covid until five months later.
“I had this horrible cough and they kept telling me I had bronchitis but nothing they were doing for treatment was helping,” she said in a phone interview.
In addition to the cough, which she had for three months, Gebo, 34, began to experience a variety of other disparate symptoms that left her and her doctors puzzled.
“I would go into the living room where my husband was working in the middle of the day and be like, you smell something burning? And he would be like, no,” Gebo said. “Or I would have ringing in my ears.”
Gebo said she also experienced extreme fatigue and numbness and that her heart rate would vary wildly for no obvious reason.
She finally got a Covid antibody test when the cough returned in July. It was positive. But Gebo knew that did not explain most of her ongoing problems.
In September, Gebo finally decided to see a neurologist. After a battery of tests, he diagnosed her with chronic inflammatory demyelinating polyradiculoneuropathy, or CIDP, an autoimmune disease of the nervous system that targets the body’s nerve cells. The inflammation and nerve damage that results can be debilitating.
“I have difficulty walking — I definitely walk funnier now than I used to,” Gebo said. “CIDP, if left untreated, puts you in a wheelchair.”
In late September, Gebo’s symptoms forced her to temporarily stop working. She relies on help from her husband and sister to complete household tasks.
She’s 30 but joint pain made her feel like she was 90
Jasmine Kennedy, a finance professional in Atlanta, Ga., contracted Covid about two weeks after a meeting with clients who had just returned from Italy in March. She was out of work for about six weeks, suffering from the tell-tale respiratory distress from the virus.
“I was walking around my house and it felt like I was running and breathing through a straw,” Kennedy, 30, said in a phone interview.
But almost as soon as she came down with the virus, Kennedy developed some less typical symptoms, ones that prompted her doctors to run further tests.
“With my joints, I started feeling like I was like 90 years old, like almost immediately,” Kennedy said. “And then it made my hives that I had when I was a kid, like just flare up significantly.”
Her doctors ran some blood tests and eventually diagnosed her with rheumatoid arthritis, an autoimmune disease that primarily attacks the joints, but can also affect the skin, lungs and hearts of those affected. And for Kennedy, it has meant getting used to a new normal for her body.
“My neck, shoulder area, and then my knee hurts,” she said. “But it’s random and it travels. One day, it’ll be my right hand and then the next day will be my left hand.”
Long term, rheumatoid arthritis can cause organ damage, joint deformity and disability — something Kennedy thinks about.
“Some people have it so bad that it has started affecting their organs,” she said. “But luckily, I’m like, in the early stages of it, so you know, right now, it’s just joint pain.”
Covid and autoimmune diseases: a tough relationship to prove
Dr. Jill Schofield is an immunologist in Denver, Colo. who specializes in autoimmune conditions in her clinical practice and research. She said in a phone interview that while an overzealous immune response to the coronavirus may be to blame for many long-haulers’ symptoms, the jury is still out as to whether the same process can actually trigger autoimmune diseases like rheumatoid arthritis.
“You know, the standard line is association does not prove causation,” Schofield said.
“That being said it has been shown and it’s recognized that infections are one of the environmental triggers of autoimmunity, it’s just very hard to prove the causation.”
Anything that creates an inflammatory state — including infection, vaccine, pregnancy and even concussion — has the potential to set off an autoimmune reaction and result in an autoimmune disease, Schofield said.
One illness that most scientists agree does result from certain infections is Guillain–Barré syndrome, where the immune system attacks the nervous system. During the 2015-2016 Zika virus outbreak in South America, doctors in several countries observed a sharp increase in Guillain–Barré cases. When they looked at patients’ medical histories, they found that the majority had also had Zika in the preceding weeks.
New research suggests that Covid may trigger Guillain–Barré too. Dr. Marinos Dalakas, a neuroimmunologist at Thomas Jefferson University, recently published one of the first papers documenting the link.
“It’s the first documented autoimmune disease triggered by Covid,” Dalakas said in a phone interview. “But we do not yet know that Covid can cause a typical autoimmune disease.”
That kind of connection has not been established between Covid and Graves’ disease, CIDP or rheumatoid arthritis. And that may never happen. That’s because most autoimmune diseases arise from a complex set of factors, Schofield said.
“First of all, you have to have a genetic predisposition to get an autoimmune disease, period,” she said. “Plus one or more environmental triggers, probably more than one.”
The right interaction between these genes and triggers — a viral infection could be one such trigger — results in the development of autoantibodies, antibodies that attack the body’s own proteins. In a condition like rheumatoid arthritis, Schofield said, these autoantibodies are often present in patients’ blood years before their symptoms begin. That makes it even harder to tie Covid, an illness that has been around for less than a year, to an autoimmune condition.
Even though Covid is probably not the only environmental trigger for these diseases, theoretically, Schofield said, Covid may still be one of them.
“Maybe the gun was already totally loaded up,” Schofield said, referring to a Covid patient with a genetic predisposition and other risk factors for autoimmune disease. “And they just needed one more push over the edge.”
Schofield said more research is needed before immunologists can establish a satisfying answer about Covid’s role in autoimmunity.
“It’s just a difficult issue,” Schofield said. “It’s a difficult question that is not very clear cut.”
Meanwhile, the lack of clear answers continues to weigh on the patients with post-Covid autoimmune disorders.
Julie Copaken is still being treated for Graves’ disease, but worries if her Covid infection has left her with other medical problems she’s not yet aware of.
“Something in my body triggered Graves’, and that’s diagnosable and they can understand it,” she said. “But like, what else did it do to me? What else could it have triggered that’s potentially gone undiagnosed?”
While it is too early to tell what her long-term prognosis will be, Keri Kae Gebo said it could be months or years before gets her normal life back, even with treatment.
“My physician sort of said I needed to be prepared not to feel much better for about three months,” she said in November. “And then between 12 and 18 months to feel like healed and recovered and great.”
And Jasmine Kennedy is asking the same questions many doctors and scientists are asking about the long-term effects of Covid.
“Hopefully, this is like an acute, like situational [case] of rheumatoid arthritis,” said Kennedy, who has no family history of autoimmune conditions. “But you know, to think that this is for a lifetime, what does this virus do to like, make it trigger that?”