The negative ELISA was the start of my journey for more answers. At that time, I wasn’t aware of how faulty the test was and that there were false-positives AND false-negatives! I just knew that there was something wrong with me and I needed to find out what it was!
It was fortunate that I dragged my husband with me to the appointment after the negative ELISA as my GP recommended that I see someone to talk about what was going on with me. My husband advised my GP that he had seen a few of my symptoms such as the slurring of my speech after a sip of wine, the mixing up of words and the inability to walk a straight line. She agreed to send me to a Neurologist. That appointment was a few months away.
In the meantime, I got back on the CanLyme website and started looking for answers. They had contact people for each province so I emailed the gentleman that was the contact person for Nova Scotia at that time (I am actually now the Nova Scotia contact person for CanLyme) which was Larry Burke. Larry’s wife was one of the very first cases of Lyme in Nova Scotia. He was able to recommend a “Lyme Literate” Doctor that practiced in Nova Scotia. Dr. Ben Boucher was the only “Lyme Literate” Doctor in the province at that time and subsequently closed his practice in 2013 – but more on that later!
I contacted Dr. Boucher’s office and made an appointment for September. A few months away. There were days I could barely hold my head up and spent a lot of time in bed because of the light sensitivity and headaches/head pressure. However, on the good days I was on the computer looking for any and all information that I could find.
I made contact with my local MLA (Member of the Legislative Assembly – Provincial Government) who advised of several people in her constituency that had been diagnosed with Lyme. She connected me with a few of those people and she also provided me with a copy of a book called “Ending Denial – The Lyme Disease Epidemic – A Canadian Public Health Disaster”. I had a hard time reading and comprehending words then but I was able to get the gist of what it was saying. The book was my first glimpse at how controversial and under-recognized tick borne diseases were in Canada (and elsewhere).
In a very short time (approximately two weeks) I became aware of several people that had been diagnosed that had a direct or indirect connection to me:
- a former co-worker was bitten while mowing his grass in my community
- the son of a former classmate
- the brother -in-law of a former co-worker
- the son of my family’s lawyer (ended up with a pacemaker due to Lyme carditis
There were approximately ten people that I quickly came across. I was being told that Lyme was rare in the province. Rare? If I could find ten people, in less than two weeks, how could that be considered rare? At that time, Lyme was considered endemic in a particular park in my community. None of the people that I had found had been in that park. The entire community is now considered endemic but back in 2011 EVERYONE thought they had to be in the park to be in contact with disease-carrying ticks. That was obviously not the case!
Because of the book my MLA loaned me, I started reaching out to my friends that had received a diagnosis of ALS and MS, just to let them know that Lyme had similar symptoms. I also reached out to several friends of mine that were Doctors. I was told the tests were good! I was asked if I thought I knew more than they did! I was directed to old, outdated information! In other words, I soldiered on and did more and more research. I spoke to more and more people. I sent more and more emails.
I needed to know more!