When Lyme Disease Goes to the Heart

Carolyn and her dog x with the friends helping her get the xx treatment.

Carolyn with her pooch Betty and, from left to right, the friends who have banded together to help Carolyn get treatment: Mark Gordon, Jim Pettengill, Teresa Gordon, Bruce Hoppenworth, Marianne Antonelli, and Gary Antonelli. Not pictured: Maggie Gobie.
Photo: Randy Martinek

Lyme affects the heart in more ways than one. Just ask Carolyn Ross, who was loving the outdoor life on a Virginia horse farm back in 2007. Then ominous change came overnight.

She can tell you the day her health crashed: December 27. After a holiday party, flu-like symptoms came on, and a few days later she noticed a rash on her arm.

Several doctors tested her for everything imaginable, including Lyme; even that test came back negative. “So I missed the chance to get antibiotics right away,” she says.

She kept getting new symptoms, like joint pain and fatigue. She had no idea of the heartbreak ahead.

Losing Financial Security

Carolyn was eventually diagnosed with Lyme and began treatment, but unfortunately the disease had progressed.

“It was hard. I’m a single, divorced woman who has taken care of herself for 30 years,” she says. “My girlfriends drove me to work each day and colleagues helped with my workload.” She was pushing as hard as she could.

A year later, Carolyn had to give up her job and go on disability. That day marked one of the darkest in her life. But there was more to come. She discovered that the cost of treating chronic Lyme is not covered by insurance.

“I had a good financial plan. I did everything right before I got sick,” she recalls. Lyme disabled her, and also blew apart her finances. Carolyn spent all of her savings and burned through her retirement fund trying to get well. She couldn’t even pay rent. “I’ve spent it all in the last five years.”

Losing independence, growing in love

As she explains on her family’s website, both physical and mental symptoms hampered her daily life. “As a woman who had been an executive assistant my entire life, I was used to doing fourteen things at a time. Now I couldn’t subtract from my checkbook.”

She couldn’t cook or run a bath because she’d leave the burner on or let the water overflow. And she had to walk with a cane. It was time to move home with mom and dad, who live in Michigan. She was 51 years old.

The experience has brought intense emotions. “My parents are 74 years old and they have the stress of me being sick when they are supposed to be relaxing and enjoying life. I’ve strained their finances and their retirement. How could parents not help when it’s their kid and nothing is covered? But the guilt I feel is tremendous.”

Of course, a big positive was the comforting cocoon of support from her family. However, Carolyn found herself sleeping later and later into the day, overwhelmed by her illness. Finally her dad said, “You need a dog or you’ll never get up.”

That’s when a small pug came into her life. Dad was right; Betty was a life-changer. Carolyn, a born animal lover, now had a reason to get up every morning.

Betty

Betty

Lyme disease and the heart

Then, in early 2011, a cardiologist diagnosed severe heart problems and put in a pacemaker. Patient advocate Kathy Meyer explains why:

“Carolyn’s heart was so damaged by Lyme bacteria that she needed a pacemaker to survive; her heart couldn’t do its job. An ultrasound showed her blood flow almost entirely blocked from going in and out of her brain, even with the pacemaker on the highest setting.”

Kathy continues: “Imagine living without enough oxygen getting to your brain. The pacemaker keeps her heart beating, but it’s not getting much oxygenated blood to the brain. Opening the ‘pipes’ of blood flow is the only possibility for Carolyn to have a life.”

The name of her condition is Chronic Cerebro-Spinal Venous Insufficiency (CCSVI); she needs surgery to correct it.

“You don’t look sick.”

Carolyn says that for her, the general lack of understanding about Lyme is the worst part of the disease. “I know what people are thinking when they say, ‘but you look so good!’ They are thinking you look so good you must be able to work. I used to think that about people myself! Now I know: you may look fine on the outside, but inside you are screaming at the top of your lungs. “

When people do recognize that she’s ill, they think it’s just from her heart problem. That’s all. They completely miss the connection that Lyme caused her heart issues—along with many other sometimes invisible but debilitating symptoms like neurological and cognitive issues.

Next steps

A procedure to clear her veins runs $10,000; then there’s the cost of ongoing care. The Ross family has already spent more than $100,000; they have just about exhausted their funds.

Much to Carolyn’s amazement, her childhood friends in Michigan have stepped in—in a big way. In addition to immeasurable moral support, they are raising money to create a trust for Carolyn. The family hopes that once the critical procedure is over and paid for, any additional contributions coming in will help with future medical bills.

Kathy Meyer says, “Carolyn hopes to regain a life and be able to sit up without disabling dizziness, faintness and nausea. She accepts that some of the damage done to her body, especially her heart, is already permanent, but she wants to do good things with whatever capacity this procedure grants her. I believe she will indeed impact others.”

Carolyn is already doing just that. After a doctor suggested that she journal about her struggles, the Ross family turned that idea into a children’s book about Lyme. With a wonderful illustrator joining in, they created Betty the Pug and the Icky Tick, available soon.

Carolyn says the family’s goal will be met if they can prevent even one child from getting Lyme. “After searching for God’s meaning for my life for many years, I now know my purpose.”

To learn more about how Lyme disease invades the heart click here.

Visit the Michigan Lyme Disease Association. And take their survey if you live in Michigan and have Lyme.

If you’d like to share your story, please click on the comment button.

About these ads

Tagged: , , , , , , , , , , , , , , , , , , , , , ,

One thought on “When Lyme Disease Goes to the Heart

  1. jeanvieve7 September 10, 2013 at 3:51 am Reply

    Reblogged this on My Color Is Lyme and commented:
    one brave woman’s story about the destruction of her heart from Lyme Borreliosis

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

Follow

Get every new post delivered to your Inbox.

Join 95 other followers

%d bloggers like this: