Posted on May 16, 2013 in Blog |

Day 16 – May is Lyme Disease Awareness Month

On June 5, 2002, my dad called at 11:30 pm. His baby sister, Aunt Betty, had died earlier that afternoon of a pulmonary embolism. She was 57 years old.

She died of complications from Lyme Disease.

Exactly two years prior, Aunt Betty went to her physician in Auburn, Alabama with a classic “Lyme” EM rash on her calf. She had not seen a tick, but she had been with her horse on their five acres of land. She asked if it might be Lyme Disease.

“We don’t have Lyme disease in Alabama,” he replied. “It’s an allergic reaction to sunscreen. I know PABA when I see it.”

He prescribed some lotion and dismissed Aunt Betty.

That fall, Aunt Betty returned with weakness in her legs.

Blood tests showed positive for Lupus.

Over the next few months, Aunt Betty’s health continued to decline. She experienced more weakness in left hand, cramping in left hand and in throat, muscles hurting all over body, stiff in the morning, and numbness in left foot.

Doctors then changed her diagnosis to Muscular Dystrophy.

Then they changed it to ALS – “Lou Gehrig’s Disease.”

For a year, physicians refused to test Betty for Lyme disease.

By August of 2001, a year after her initial rash appeared, Aunt Betty was using a walker.

And in August, doctors finally agreed to a Lyme test from Igenex.com.

The test was positive.

Aunt Betty started treatment.

On September 11, 2001, when most of us were watching the World Trade Center Twin Towers fall in New York, Aunt Betty was getting a PICC line.

Back in 2001, they didn’t have the progressive testing they have now. But they were trying. They started Betty on Biaxin, Flagyl, Diflucan.

A couple of months later, Aunt Betty was still deteriorating. They started her on Zithromax; she showed improvement.

December, 2001, her Lupus test was negative. But she was in a wheelchair full time.

Doctors continued her on various meds, and she was improving, but it was going to be a long recovery.

Six months later, Aunt Betty died from a blood clot that had formed in her leg due to her immobilization in the wheelchair.

Aunt Betty didn’t have Lupus.

Aunt Betty didn’t have Muscular Dystrophy.

Aunt Betty didn’t have ALS.

Aunt Betty had Lyme Disease (and probably a co-infection or two).