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Living with Late-Stage Lyme Disease: The Journey to Diagnosis and Treatment

Living with Lyme disease can be debilitating, and for those in Canada, diagnosis and treatment can be difficult to come by. Nicole Legros has been dealing with late-stage Lyme disease for many years, and the most important lesson she has learned is the importance of prevention. She dresses in long sleeves and pants, sprays an all-natural tick repellent on herself and her dog, and stays off the grass as much as possible. There has been no escape from the effects of the disease, and she knows she is not alone.

Legros was just eight years old when she began experiencing severe back and joint pain, fatigue, memory loss, and brain fog. Her first visit to Sick Kids Hospital in Toronto was for severe lower back pain. She was diagnosed and treated for an auto-immune disease, but her family was told she would be in a wheelchair by the age of 20. Legros continued to experience symptoms, and it was not until 2018 that a local chiropractor recognized the signs of Lyme disease.

In Ontario, testing for Lyme disease is often negative due to the testing needing to be done within a short time after contracting the disease. Legros had to send her tests to the US where they returned positive. She was found to have several co-viruses that ticks carry and transmit. Armed with this information, Legros sought out a Lyme-literate naturopathic doctor who prescribed an oral antibiotic. Legros sought out other treatments as well, including blood treatments, vitamin IV therapy, stem cell therapy injections, and spinal freezing, but none offered relief from her symptoms. She finally found a doctor in Washington, D.C., who agreed to treat her with IV antibiotics for late-stage Lyme disease.

She was scheduled to travel to the US every other month, and border crossings were easy, but a few months into her IV treatment she became very sick. Legros was admitted to a local Niagara hospital but doctors didn’t recognize what was happening. One doctor helped her gain weight, and she returned to the US for surgery to remove her gallbladder, which was damaged from Lyme disease. After seven surgeries in the US, her body could no longer cope with the heavy regimen, and instead of improving, Legros’ health was declining. She still has problems with digestion, has little energy, and is constantly in pain.

Legros has been left with a difficult decision. There are better treatment options that have higher success rates in Florida or Germany, but neither is available in Canada. Her family has set up a GoFundMe page to help with the cost of treatment. For those with Lyme disease, prevention is key. But for those who are living with the disease, access to proper diagnosis and treatment should be a priority.

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