A Valley teen is still battling the symptoms of COVID-19 more than a year after contracting the virus.
Lydia Pastore, a 16-year-old junior at Red Mountain High School became incredibly sick in February 2020. For the past year, she has experienced intense fatigue, body aches, and a slew of other symptoms ranging from burning eyes and face to hand tremors.
"That was the worst sickness that I had ever endured in my life," said Lydia. "It's just been constant muscle aches and fatigue where I just can’t snap out of it. Walking to the end of my driveway, it would exhaust me to the point of having to recover for two days.
All year long, Lydia was plagued by chronic fatigue, sleeping on average 15 hours a day. After multiple doctor's visits, she began a journal as therapy for her hand tremors that turned into a tracking method for her own symptoms.
"I made a monthly symptom tracker, just because there were so many symptoms to keep track of," said Lydia. "I wish that at the beginning of my infection I had had a resource like that because every specialist I had visited asked me, 'What has changed? What is new? What are the symptoms you're experiencing?' And it was always frustrating trying to remember all that."
Lydia decided to turn her ailments into a chance to connect with other teens who are battling the long-term effects of COVID-19. She created the website chronicconnections.org, where teens can share their personal journey with COVID-19, and request a symptom-tracking journal that Lydia sends out free to anyone in America.
"I would hope that it would be a place for teens to connect with others who are going through the same thing as them. To find comfort in similarity," said Lydia, who has already received four letters from teens about their struggles. "I’m just so happy already with these four stories already that I’ve had so far and I’ve given these journals to, but I just feel there are so many more teens out there."
What is "Long COVID?"
Lydia said she has seen eight different health specialists find out why she is still experiencing COVID-19 symptoms months after her illness. Her tests for Valley fever came back negative. Although she was never tested for COVID-19, her doctors believe that Lydia has "Long COVID," when a person experiences COVID-19 symptoms long after contracting the virus.
"This post-viral syndrome occurs where you’re done with the initial infection but for some unknown reason, we continue to have some of the symptoms you had before for a length of time that doesn’t really make sense scientifically," said Dr. Gary Kirkilas, spokesperson for American Academy of Pediatrics.
To doctors, Lydia is considered a "long hauler." Dr. Kirkilas said once the virus clears in long haulers, there is a residual effect from COVID-19 that could be caused by remaining low amounts of the virus that are undetectable by COVID-19 tests, but still require a response from the body's immune system. Another reason could be that the initial virus caused internal organ damage that is still not healed.
On Tuesday, The National Institute of Health (NIH) announced a new initiative to study "Long COVID" to "identify the causes and ultimately the means of prevention and treatment of individuals who have been sickened by COVID-19, but don’t recover fully over a period of a few weeks."
According to the NIH, symptoms include fatigue, shortness of breath, “brain fog,” sleep disorders, fevers, gastrointestinal symptoms, anxiety, and depression.
"The thing that separates them is this brain issue, this brain issue of this fog," said Dr. Frank LoVecchio, ER Physician at Valleywise Hospital. "In the hospital, we call it encephalitis (or inflammation of the brain). They can’t concentrate as well. They tend to be more forgetful."
In December, the U.S. Congress provided $1.15 billion in funds to the NIH to study the long-term effects of COVID-19.