After watching the Nature of Things program on Lyme disease the other night, I felt it was timely to share our story with the community.
A year and a half ago my son came down with a high fever, a red rash on his leg, headache and severe light sensitivity. We went to the hospital, doctors and over the next seven months we saw pediatricians, ophthalmologists, neuro-opthalmologists, neurologists and rheumatologists.
When we asked about Lyme disease we were told “it’s not the right shape rash,” “it’s the wrong time of year,” and my favourite “there’s no Lyme in BC.” They finally ran the Lyme antibody test on him six months after onset and it came back negative.
Health Canada has published a bulletin announcing this test has an error rate between 38 and 68 and yet our BC medical system is using it as a tool to absolutely rule out a Lyme disease diagnosis. See: hc-sc.gc.ca/dhp-mps/alt_formats/pdf/medeff/bulletin/carn-bcei_v22n4-eng.pdf
Thankfully, someone sent us a link to the Canadian Lyme Foundation who directed us to send his blood to an American lab. Through one blood test in the States we able to get a correct diagnosis for not just Lyme, but also babesiosis and bartonella — other diseases that ticks carry (which he wasn’t tested for in Canada).
We returned to Canada with a Lyme diagnosis, testing results and research papers on neurologic Lyme in children and were still denied treatment. Thankfully we were able to pay for treatment and get him better.
Until Lyme disease testing and treatment guidelines are improved in BC there will be more and more undiagnosed cases. The disease can wreak havoc with your whole body and leave you completely disabled. Early diagnosis is so important. Lyme disease is here in Nelson. There are at least a dozen people in Nelson with Lyme that I am aware of. That’s more than one in every 1,000.
Please educate yourselves about this disease so that you are prepared if anyone in your family gets it. I would hate for any other family to go through what we have gone through. See: canlyme.com/lyme-basics
M.J. Jojic, Nelson