My Journey with Lyme Disease

May is Lyme Disease awareness month, so this is a great time to share my journey with Lyme disease and bring awareness to what chronic Lyme disease can look like.

Let me take you back to 2012, when Lyme Disease was hardly ever talked about and most people, including health care professionals, didn't know much about it. Some specialists believed that Chronic Lyme didn't exist, and that Lyme was easily curable.

I started having sinus infections, fatigue and joint pain in my right hand at the end of spring that year. I wrote off the fatigue to having an 18 month old toddler who didn't sleep through the night along with my three older children to care for at home, and I had recently returned to work as a physiotherapist at the local hospital.

I thought my joint pain was due to using my hands more at work after having been on maternity leave. I would treat my pain with ultrasound at work. The pain would go away for a few weeks, but it kept on coming back. Then I had a sinus infection, and that first round of antibiotics helped me feel much better, but I still had lingering sinus issues after finishing the medication. I wasn't concerned with these symptoms; they were all things that I could deal with and push through to keep going.

It came to a head in September of that year when after work one day, one of my arms went numb. I thought it was a pinched nerve and went to go see my massage therapist. The feeling came back to my arm but the following week my other arm experienced the same numbness. I returned again to my massage therapist and while on her table, both of my legs became numb from the knees to the toes (this ended up lasting for several years). It was at this moment that I knew something was wrong and that I needed help.

After meeting with my family doctor, he suggested that it could be Lyme disease and sent me for bloodwork. My blood test came back negative and so we continued the search for answers. After much bloodwork and a few MRIs later, no one could tell me what was wrong with me. I was getting worse - it progressed to muscle weakness and fatigue (I couldn't even lift one pound weights for exercise anymore), my feet were numb, I had extreme sensitivity to hot and cold items touching my skin, brain fog and focus issues,  trouble finding words when speaking, I was easily angered (which was unusual for me), and lastly, there was extreme fatigue - I had to nap daily and often for hours at a time. 

I decided to quit my physiotherapy job to focus on my health, and lost my provincial physiotherapy license due to insufficient work hours. I had thought that my 30's would be an awesome time of life, but now I was afraid that I would never be able to live fully again.

I had started seeing a naturopathic doctor during this time - looking for a broader perspective. When he heard about my symptoms, he thought it sounded like Lyme disease, but informed me that most people have a false negatives from Manitoba's standard test. My blood work was sent to the Igenex lab in California - I received my positive lab results and treatment commenced.

I worked together with my family doctor, my Naturopath and a Lyme literate doctor from the USA. Together we developed a treatment plan of various antibiotics, herbal tinctures, supplements, diet and lifestyle changes. It took four long years of difficult treatment, but it eventually led to remission!

During this time, my husband Kyle as well as our two boys were also diagnosed with Lyme and other tick infections. They too have experienced similar treatment programs and after a couple of years, our sons have also gone into remission. Kyle had managed to go into remission in 2019 but due to extreme stress in 2020 the Lyme symptoms returned and he is still working through the Lyme symptoms.

I still have to manage my commitments and my energy levels to make sure that by the end of the week, I haven't overdone it. I also continue to take supplements for my health and do my best to follow a gluten-free, dairy-free diet; these foods cause fatigue and focus issues for me. A big part of my final healing was discovering the Anat Baniel Method® NeuroMovement® method. 

It was through ABM that I have been able to work on healing the years of damage that the Lyme did to my brain and nervous system. I have learned to move my body more efficiently so I use less of my energy resources and can have more energy for other things. ABM also helps me cope with stress and my body is more resilient when faced with the heavy demands of life. My thinking is clearer and my focus is better with regular ABM lessons. 

It was a long, difficult journey. I hope my story brings hope to others, and I'm very grateful for the health care professionals who listened to me and believed us when others didn't, and for the opportunities that emerged from my constant research. And I'm grateful to be able to help others navigate similar journeys through health trauma - there is always hope.