A Local Man's Struggle With Lyme Disease: 'I Want People To Know How Bad This Disease Is'

A Local Man's Struggle With Lyme Disease: 'I Want People To Know How Bad This Disease Is'

Posted: Aug 29, 2012 4:20 AM Updated: Aug 29, 2012 4:20 AM

by Chelsea Kopta, KHQ News Reporter - bio | email

http://www.khq.com/story/19402073/a-local-mans-struggle-with-lyme-disease-i-want-people-to-know-how-bad-this-disease-is

VIDEO

 

SPOKANE, Wash. - On a warm day in Spokane, sitting at a picnic table beside his wife, Carl Burrows didn't seem to have a care in the world. A quarter-century of struggles with Lyme disease seemed distant as recounted his glory days in a singing group.

 

"How does a white guy have such a soulful voice?" Burrows asked, through chuckles. "I was just born with it."

Growing up, Burrows was known to have a velvet voice.
"She can tell you," he said, nodding to his wife of close to four years, Pam Deardorff. "There ain't too many better singers than the old man."
With his band The Sweet Souls, Burrows used to bring the house down with the music of Motown.
"We had four singers and I loved it," he continued. "I loved it."

But Burrows hasn't sung on stage in a long time.

"I would love to get back out there and sing but ... this disease has taken a lot from me," Burrows said through tears.

Burrows has struggled with Lyme Disease for 25 years.

 

He believes he first contracted the disease in 1987.  He lived in New Jersey then and owned an air conditioning repair business. After his last job for the day, he looked down at the unit, which he said was surrounded by bushes, and noticed several ticks.

 "When I got back into my service truck, my head was itching," Burrows recalled.

Soon after, he discovered a rash and his hands swelled. 

"I didn't know what it was," he said.

Neither did doctors.

 

"They actually sat there with me, with a medical journal flipping through these pages to see what this really looked like," he explained.

 

Six years would go by before Burrows was properly diagnosed.

 

"I've probably seen a minimum of 50 doctors," he said.

During that time, doctors treated the symptoms but the symptoms kept returning. He suffered through years of relentless pain. He had body aches, joint pain, muscle spasms, he couldn't sleep. He was depressed.
In search of a proper diagnoses, Burrows sought out every doctor from dermatologists and neurologists to Multiple Sclerosis (MS) specialists. In 1993, doctors diagnosed Burrows with MS.
"This disease was mimicking MS," Burrows explained.

Burrows said MS treatments made him deathly ill. He believed he'd been misdiagnosed.

"I kept having these panic attacks over and over," he said.

In 1994, unconvinced of his diagnosis, Burrows' friend referred him to a Lyme disease specialist. The doctor diagnosed him with Lyme disease.  Slowly, he began to feel better. He was in remission for seven years.

 

But in 2002, the disease reared its ugly head. Burrows spent the last decade fighting Lyme disease, in and out of hospitals all over the country.

 

Miraculously, there's one place Lyme disease has not affected Burrows: his voice.

 

"I think God won't let him do it," Burrows added.

Burrows doesn't sing before crowds any more since Lyme disease often saps him of strength. Burrows' dream is to one day reclaim his spot on stage but until then, he's found a new voice.
"I want people to know how bad this disease is," he said through tears.

No matter what Lyme disease stole, this man from Motown never lost his heart and soul.

 

Burrows still has a long way to go in his fight. He just returned home to Troy, MT after spending 51 days in the hospital. Doctors say the lesions in his brain shrunk and he's feeling better.

 

Burrows has since become a speaker for Lyme disease and encourages everyone to get checked for Lyme disease. He says early detection is the key.

 

RESOURCES:
Lyme Disease United Coalition: http://www.lduc.org/
Spokane Regional Health District: http://www.srhd.org/documents/SpokaneCounts/Environmental%20Health.pdf
Spokane Outdoors: http://www.spokaneoutdoors.com/ticks.htm

 

 

 

CARL BURROWS IN HIS OWN WORDS:

 

This is my story, with my Lyme disease struggle. This disease mimics so many other disease's and tricks your immune system. I was a self-employed heating and air condition tech in 1987. I was out working on a condensing unit surrounded by bushes. All around me there were bugs and ticks. I fixed the unit, made out the bill, got back in my truck, and started heading home because that was my last call.

 

Then, I started itching in my head and chest area. When I got home, my wife at the time told me to take off my shirt and go take a shower. So I did. The next thing she said was, "What is on your chest?' Well, it turned out to be a red, raised circle the size of a large softball. 

 

The next day I went to the hospital but it was 4th of July weekend and all we had were resident doctors. They sat on the bed with me and looked through the medical book trying to see what this was. First, they said maybe Rocky Mountain Spotted Fever, then the other resident doctor said it  looks like Lyme disease. Mind you, this was back in 1987 when they didn't know much about Lyme.  They treated me with antibiotics for three days in the hospital, then sent me home and treated me home with oral antibiotics for 30 days. This was not long enough. The rash went away. A week later I had flu-like symptoms. Every year around the same time I broke out in a rash.  

 

Moving on. in 1993, I started to have panic attacks. I never had anything like that ever. Doctors did an MRI of the brain found nothing. I still was having problems then. My balance started to be not right, so they did another MRI about a week later and this time found  one brain lesion in the center of the white matter, on the right side of brain. Then doctor after doctor after doctor said 'You have MS Carl.'

 

They put me back in the hospital and ran all kinds of tests and part of the tests they ran, they couldn't figure out why some came back positive and most didn't. Anyway, they treated me with high doses of steroids that made me go out of my mind felt like ripping my hair out because of the pain. They did a spinal tap and checked for MS profile. All of the tests that came back were negative for MS except for one. They sent me home on oral steroids, but I had to stop them as soon as possible because they made me worse.

 

I started asking questions . One of my friends knew someone who had LYME . His symptoms were same as mine. I went to his doctor, he examined me, and told me I do not have MS . It is LYME DISEASE. The doctor did a blood test. He told me to have IV therapy and antibiotics. I did my infusions at home. The first round was Rocefin. After 28 days, I broke out in a rash. I wasn't quit sure why. He put me on Penicillin IV. Near the end of the third month, the insurance company said I took enough antibiotics to kill anything. Then the doctor put me on Bycillian shots for 6 months. The needles were the big horse needles. After the shots were over, they did another MRI and the lesion had shrunk some in size showing that the antibiotics were somewhat working. I was able to go back to work, feeling about 80% better.

 

The Lyme went into remission in 1994. I went back to work. .It slowly came back in 2002. I started having panic attacks again and my balance got worse. I had pain and burning in feet and legs as well as pain in all my joints. The pain and panic slowly got worse and worse because the bacteria in the brain was causing me to have emotional problems.

 

I went back to have an MRI this time I had more small lesions. The doctors put me back on oral antibiotics. That seemed to stop it from getting worse, but wasn't getting any better. I had to quit working and got on social security disability. No improvement. In 2011, I did 90 days of intravenous antibiotics. I had to drive 20 miles to the hospital and 20 miles back home every day for 90 days. I started seeing an improvement in my balance and with the pain. I went back into the MRI again and the lesions were some what smaller in size but still there. I have been in MRI machines at least 20 times over the years. I have switched antibiotics seems like a million times. I am in so much pain all the time I am visiting a Lyme specialist in Iowa every 3 months. 

 

He now has me on the Bycillin shots again 1,200,000 units, twice a week. If I would have received the proper treatment back in 1987 I could have beaten this disease. But six years went by from 1987 to 1993   and doctors and their medicine were of no help, so I cried out to God for his help. I'm telling my story to let all people know to get treated immediately after getting bitten by a tick. See a Lyme disease specialist. This is a very debilitating disease if not caught in time. I give God all the glory for letting me live through this disease so that I could tell my story in hopes that it will reach out and help some one else who might have been misdiagnosed."

THANK YOU CARL BURROWS