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Lansing-area 'long haulers' say they're too often misdiagnosed

Posted at 7:29 PM, May 12, 2021
and last updated 2021-05-14 06:33:29-04

LANSING, Mich. — Kelsey Snyder is 24. She was healthy until a few months ago. Now, she relies on supplements to manage symptoms that linger months after she contracted COVID-19.

I got COVID on December 20th 2020

"I got COVID on December 20th 2020," she said. "My husband had symptoms three days before I started showing symptoms, and then I got what felt like a cold, or maybe a sinus infection on the 20th. I recovered, then end of March comes and just out of nowhere I get hit with symptoms."

Kelsey is experiencing what many COVID long haulers experience: postural orthostatic tachycardia, a blood-circulation disorder often abbreviated as POTS.

Dizziness, intense fatigue and an inability to exercise

Her symptoms include dizziness, intense fatigue and an inability to exercise. They're symptoms, Kelsey says, that Mid-Michigan doctors struggled to identify.

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"I went to urgent care twice. Both times they just said, 'anxiety,'" she said. "Then it got progressively worse."

"I went to urgent care twice. Both times they just said, 'anxiety,'"

"I don’t know if you’re on any of these Facebook groups, but everybody, the beginning of their story, is like 'I started having shortness of breath and I went to the doctors and they just said it’s anxiety,'" she added.

"It’s not just me, it’s not just Michigan, it’s people all over the place."

One of the groups Kelsey is referring to is Michigan COVID-19 Long Haulers, where many members describe the same struggles.

A post in a COVID-19 Long-Hauler group sharing concerns due to lack of care

One woman named Susan who writes; "As Michigan long hauler I'm so disappointed at the lack of care for those who had serious COVID illness but were not in ICU or intubated, thus, cannot get care at U of M long COVID care center. I had to drive 180 miles to (the) Cleveland Clinic."

COVID long haulers feel like their sickness is being written off.

Dr. Michael Zaroukian, the vice president and chief medical information officer with Sparrow Health System acknowledges that many long haulers are initially misdiagnosed.

Dr. Michael Zaroukian, the vice president and chief medical information officer with Sparrow Health System

"When symptoms seem medically unexplained we are too prone sometimes to attribute them to stress or anxiety rather than a pathology that is COVID," Zaroukian said. "Even in an area like this, where we've had a lot, and we've talked a lot, there is still that tendency, in many cases to underestimate the ability of COVID to cause persistent symptoms. And that's really unfortunate for patients. We continue to work hard to make sure our providers are well informed about symptoms that are otherwise unexplained but follow COVID."

A recent study from The University of Washington shows that many COVID long haulers, like Snyder, originally had just mild COVID cases.

Somewhere between a quarter and a third of the COVID patients who come through Sparrow may be COVID long haulers

Zaroukian says there's no specific Michigan data, but somewhere between a quarter and a third of the COVID patients who come through Sparrow may be COVID long haulers, having symptoms that persist for 12 weeks or more.

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"And sometimes they're minor and sometimes more severe," he said.

There are clinics in Ann Arbor and Detroit created specifically for COVID long-haul patients, but more than a year into the pandemic, there are still no long haul clinics in mid-Michigan.

"Finding an actual clinic that's close in my area, just feels kind of impossible right now," Snyder said.

When asked if plans for a COVID long-haul clinic are being discussed at Sparrow, Zaroukian replies, "That is on our radar screen with regard to monitoring it."

Are plans for a COVID long-haul clinic are being discussed at Sparrow?

"I think probably the indicator of whether it's time for us to develop such a multi-disciplinary clinic, is how many patients we're seeing that we are otherwise needing to refer to one of those other locations such as in Ann Arbor. If that became more than an occasional need, we would certainly want to consider that," he said.

Those like Snyder who are struggling ask for at least one consideration.

"This is going on"

"The doctors are doing their best and I obviously appreciate everything they do," she said, "but it’s really important that people take that extra time to listen to the people who are saying 'This is going on'.”

The CDC recognizes that clinicians and researchers are still in the early stages of understanding long COVID.

There are multi-year studies researchers are currently in the middle of that they say will be crucial in treating patients.

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