Some COVID-19 ‘long haulers’ experience improvement with vaccine

Experts estimate about 30% of COVID-19 survivors are experiencing long-term symptoms, from loss of taste to brain fog. One organization seeks to crowdsource information and help find answers.
8:53 | 06/09/21

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Transcript for Some COVID-19 ‘long haulers’ experience improvement with vaccine
I'd never felt fatigue like I have experienced post-covid. Reporter: For most of her life, Julie, a yoga teacher, avid runner, and mom of three, has been the picture of health. Until January when her whole family came down with covid. As an athlete and someone who's always used their body, getting sick or being injured is always kind of a bad thing. Reporter: She had debilitating symptoms for weeks. My body felt so heavy, I could barely walk up the steps. What were some of the other symptoms you were dealing with? I had something called frostbite. Apparently it's a real thing. The top of my head, the ti of my fingers, tip of my nose, tips of my toes, were freezing. Reporter: With the rest of the family recovered, Julie ace symptoms persisted for months. She became what's called a covid long hauler. I couldn't drive, I had such bad brain fog that I felt medicated all the time even though I wasn't taking anything. What was it like for you to have brain fog? Brain fog feels like your brain is Swiss cheese. Your brain is super cloudy. Having a conversation like we're having now would have been very difficult, because I would lose my train of thought. Reporter: After she got her second dose of the pfizer vaccine, Julie says she noticed a change. I have so much more energy. I'm sleeping better. I have less brain fog. I have less overall fatigue in my body. You think that feeling better is tied to the vaccine? I do. Something is in the vaccine that created a sense of feeling better. I don't know if it's mental or if it's actually physical. I'd be interested to find out. Reporter: Now researchers are working to understand why some people with long-term symptoms Y they improve after being vaccinated. Long hauler symptoms are very prevalent. There are probably long haulers that are in the U.S. In the millions. Who are, you know, just starting to be recognized. Reporter: Dr. Kiko awasaki and her team at Yale university are working on a study about the vaccine's effect on those still experiencing lingering symptoms. The underlying disease process that causes the long haul symptoms is still not understood. Unfortunately, there is nothing that's proven to work to treat the long hauler disease. Reporter: But according to a survey done by survivor corps, an organization supporting covid-19 survivors, 40% of long haulers report feeling better after the vaccine. That evidence is only self-reported and scientific studies to answer the question of why are still ongoing. She's testing multiple theories. Two theories. One is persistent infection can be removed by the immune responses generated by the vaccines. The other possibility is the vaccine is inducing factors like psytokines that bind to the cells and dampen their effect so they're no longer attackinging our cells and making us feel sick. The fact that some people are feeling better, so many people are feeling better, it offers us an incredible clue. It's like a bread column trail to find an actual therapeutic that will help people. There are so many peopl suffering, we don't have any time to waste. Reporter: Diana contracted covid in March of 2020. Are you taking any medications on a daily basis? No. Reporter: At a time the virus was incredibly new. The road to recovery is not necessarily a straight line, it's kind of like one step forward, one step back. Reporter: Diana started posting video diaries of her experience to educate others as she isolated. While I was in isolation for those 18 days, I realized that physical going to be one of the first survivors, that I had a moral and civic duty to coalesce all of the other survivors, to mobilize an army O survivors to contribute to science. Reporter: The group now has almost 170,000 members, many of them covid long haulers. We have college athletes who are in wheelchairs. We have musicians who have lost their sense of hearing. We have people who cannot go back to work, they cannot go back to their daily lives. They are truly suffering. And they'd help. Reporter: While exactly how and why the vaccine helps some people with long-term covid symptoms is still a medical mystery, people like Heidi Garza are celebrating that they are finally feeling better. Heidi almost died from covid in April 2020. She spent nine days in the icu. It was a nightmare. I can't believe that I'm here right now. I had blood clots. Wow. It was so hard for them to treat me with the right thing, because they didn't have enough information. Reporter: In the eight months that followed, she continued to suffer, even losing about 50% of her hair. Sometimes, in some moments, you feel hopeless. The fact that -- go to the stairs, to the second floor. That was the biggest thing that I can do in a couple of months. Reporter: Heidi makes a living as a Zumba instructor, but for months she could only dance for about 15 minutes. I had to use the inhaler almost every other song. It was sad to see myself, the way that I was looking, because I don't remember the time, I don't remember the steps. Reporter: She says she'd be bedridden the whole next day. It was the most terrible thing, because it it was, when am I going to be okay? When am I going to feel normal again? Reporter: As soon as she was eligible for the vaccine, she jumped at the chance. How did you feel after the second dose? Good. After that, everything fine. Back to my activities. Reporter: Although she says she's not 100%, she is now teaching Zumba three days in a row, a huge step forward. I'm here. I'm alive. And it could be a different story. Reporter: Heidi recovering, but many long haulers have had little relief. I was healthy, I'm strong, I eat well, I don't have pre-existing conditions. But look at me, six months and I'm still experiencing symptoms. I'm done with this I'm over with it. Somebody come up with a solution or treatment or whatever so I can get back to my normal life. At first, I couldn't walk. I didn't have the use of the left side of my body. I had a lot of intensive therapy that I had to go through. Reporter: Danielle Jordan, don seedhole, Heather Elizabeth brown, are all covid long haulers. ABC news has been following their battle for months. There were two points when I realized in my recovery that I was going to have some long haul symptoms. I think the first point was when the doctors and the experts were telling me, and then the second point was when I kind of -- it kind of sunk in and I realized it myself. Everything is bad. It's hard to eat. I'm losing weight. It's just -- everything tastes bad and smells bad. So I forget to eat. I don't get as hungry anymore. And then my body suffers the consequences of that. And then brain fog. Which you know, is probably the most troubling of all the symptoms, just because, you know, you're sitting there in a train of thought, all of a sudden you're just lost. Reporter: We reached out again to see if they'd been vaccinated, and while all said they had, none of them had experienced much of a change in their symptoms. They hope that with more research, a cure or treatment will become available. I have really good days and really bad days. I'm used to going 24/7. And I don't feel like that. This is a huge problem going forward. Even after we control the spread of the virus with the vaccine, we still have millions of people who are going to be suffering from long covid. We need to find out the cause, and we need to figure out a therapy. Reporter: Less than a month after her second dose of the vaccine, Julie is fighting to reclaim the ground she'd lost. What's your message to anyone still dealing with these symptoms? Hang in there, I think. Get your vaccine. I think that it's helpful. People are having great results, feeling better. Try your best to keep a positive mindset. It's so hard when you're down already to be optimistic. But hope is definitely there.

This transcript has been automatically generated and may not be 100% accurate.

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