Much more to the Lyme disease story

While I was pleased to see an article in your paper about Lyme disease (Okanagan

Weekend, Jan. 11), I felt your article did very little to address the real world issues facing us commoners who live with this disease.

I have lived with chronic illness for nearly seven years and only recently discovered I have Lyme disease. I am also a sepsis survivor and I had a friend in an online sepsis survivor support group ask me if I have ever been tested for Lyme.

Initially I brushed her off, feeling overwhelmed with my existing health problems and not wanting to harass my doctor to look into something else only to be met with skepticism and dismissal.

But then I remembered the rash.

A giant bull’s-eye shaped rash that appeared on my abdomen in May of 2013. I had flown in to Penticton from Toronto for my dad’s 60th birthday so the timeline is undeniable.

My entire family remembers the rash. We thought it was a spider bite. We even Googled pictures of spider bites to make sure it wasn’t something deadly. When it didn’t match with any of the images, we moved on.

Two days later, I’m violently ill with the flu and thanks to the magic of Facebook, I can track down all this information and even a photo of the rash.

Upon presenting this information to my doctor, she casually says she’s probably can’t do anything for me at this point, orders one standard notoriously unreliable blood test, the ELIZA test, and leaves the room despite my pleas to be given the more accurate western blot test.

My test results come back negative. So now what?

I eventually find a naturopathic doctor working out of Vernon who specializes in Lyme. She listens to me. She believes me. She diagnosed me with Lyme disease based on my medical history and the bull’s-eye rash and we put together a six month treatment plan.

The thing is though, I’m paying her. And I’m paying her a lot.

There are no disability benefits for someone in my shoes. I’m self-employed so there’s no medical leave.

In the meantime, my husband works more. I manage my small children as best as I can and we hope.

That’s all we can do. Amanda Campoli Penticton