Tuesday April 29, 2014
AUGUSTA, Ga. (WRDW) - It is a mystery disease that continues to baffle many in the medical community. The illness often results in sufferers going misdiagnosed for years. While medical experts contend there is no known cure for Sarcoidosis, we are hearing from two Sarcoidosis sufferers who have unique experiences coping with the disease.
"It started with a chronic cough and the chronic cough, it led to me actually starting to get lethargic," said Cristal Davis.
Symptoms Davis said felt like the flu or pneumonia. In 2009 after weeks of feeling completely exhausted, Davis said she knew something was wrong with her health. "I would have to take a nap before a shower, take the shower, get straight out the shower and go straight to bed," said Davis.
Having seen enough, Davis said her son rushed her to the emergency room where doctors did testing and concluded what was causing her health problems.
"One of two things. Either I had blood clots in my lungs or I had cancer, "said Davis. Refusing to believe that diagnoses, Davis sought further medical testing.
"After a biopsy, I was told I had Sarcoidosis," Davis said.
Sarcoidosis causes the immune system to overreact producing tiny clusters of cells to clump together resulting in lung and other organ damage. While Davis is Caucasian, Sarcoidosis impacts African-American women more than any other group in the United States. It is a statistic that did not skip Davis.
"I have the Sarcoidosis in my eyes, I have it in my lungs, I have it in my stomach," said Davis.
In her case, the complications could kill her.
"At night I cry. You know am I going to wake up in the morning," Davis asked. "It just pretty much hit me very quickly."
Leann Byrd has dealt with the disease too after being diagnosed with Sarcoidosis in 2004.
A chest X-ray revealed that the disease had attacked her lungs and caused neuropathy in her legs. Byrd said it also caused muscle wasting in her right hand. Bed ridden for months and not wanting to just suppress the disease with medications like steroids, Byrd found hope on the internet.
"They gave a cause of the disease and they gave a reason for the faulty immune response," Byrd said.
She has found a radical treatment called Marshal Protocol, named after scientist Trevor Marshal whose research suggests that Sarcoid is caused by bacteria that multiple as a result of ingesting vitamin D which Marshal believes suppresses the immune system allowing the infected cells to continue to be attacked by the bacteria.
"Our cells, our tissues and organs are so infected," Byrd said.
To kill the bacteria, Byrd said she began inflammation therapy with off label drugs, antibiotics, and the high blood pressure drug Benicar. She also avoided ingesting vitamin D.
"After about two years I started to see the light and could feel my health coming back," Byrd said.
Today, Byrd said she has been given a new lease on life and has returned to work and school.
As for Cristal Davis, she is holding on and has found support in dedicating her time to fund raise, and raise awareness about Sarcoidosis. She is also taking everyday as if it is her last. "I live today. I don't know what tomorrow's going to hold," Davis said.