Lyme Handbook

Since it’s Lyme Disease Awareness Month, I’d like to shed light on the real difficulties and darkness that comes only with chronic Lyme disease. It’s its own specific nightmare of an invisible illness – those who have it only truly understand how hard each day really is, and why.

Let’s start with the origin, ticks. We don’t know much about these insects. They often aren’t seen as real threats. These bugs can carry up to 16 co-infections, some fatal. Ticks can be as tiny as a poppyseed, so how do we stand any chance against finding a tiny dot on our body? Or on our pets? Knowing this tiny creature has ruined my body and lives just outside my doorstep fills me with fear. How can I walk across grass comfortably again? Or lay on a blanket in the sun?

Once bitten, the bullseye rash may or may not develop. At your primary doctor’s office, they generally run standard CDC-approved testing for Lyme. This does not cover different levels of Lyme disease, or any co-infections. So even if you do the right thing and go to the doctor, get tested, your results are not always reliable. And you may continue living with a disease continuing to destroy your body.

There can be years, actual years and years of people’s lives that are falling apart due to misunderstood symptoms. Jobs are hard to keep up with, relationships are just a struggle. So much is blamed on stress, or our “crazy” mind. It may feel random but after a while, you know when something is wrong, but what?

There’s no cure for chronic Lyme. If you are able to afford or have your insurance cover an appointment with a Lyme-literate medical doctor (LLMD), all your hopes may ride on this one doctor and practice to save you. That doctor can become powerful since we often no longer have resources. And these doctors may be at risk themselves, for losing their licenses or more. Finding the right LLMD can be the make it or break it moment of our lives.

Most Lyme patients don’t just get handed medical professionals who actually understand what’s happening. Often we are ignored, turned away from services, unable to afford help or just don’t know where to go. Many can be very hurtful with their choice of words, and treat us like we don’t have Lyme, actually causing more damage. Any medical professional can lead us down the wrong path. So while fighting for our lives, we have to have the wherewithal to see if this professional first believes in my disease, and actually cares about me as a human.