It has been seven years of good days and bad days...
On and off infections, flu like symptoms, constant strep throat, brain fog, tremors, chronic pain, irregular heartbeat, memory loss and many other symptoms that slowly crept up on Nikki who was about 18 at the time it all began. She was graduating high school and just like everyone else, excited for her next steps in life. Unfortunately, her future began to seem unclear to her as these strange symptoms developed and worsened.
There was a time that Nikki had a very bright future in competitive cheer-leading as she traveled North America competing, but she became weaker and after some serious injuries she had to say goodbye to the sport that she loved dearly. She was accepted to multiple Universities and Colleges for programs in Broadcasting Media and Fashion Design, but at this time she began seeing a specialist for her brain fog and memory loss and decided it was not the right time to pursue. So, at the young age of 18, she packed her bags and moved to London, England to work and travel through Europe. The next few years were full of amazing experiences for her, as she traveled to many places in Europe, Australia, Thailand, and New Zealand. But through these adventures, her health was still at question with many trips to the doctor while traveling. In 2016 Nikki knew it was best to head home and begin a life back in Niagara, where she began to look into her next steps for work. This is when everything began to go very downhill for her.
Working full-time as a waitress and living in a student house with her friends, she was living the life that many other women in their young 20's do. One day near the end of summer Nikki woke up with what she thought was the flu... Her body ached, she could hardly get out of bed, and she had never felt sicker. Weeks passed, and for some strange reason the symptoms did not, the Doctor told her it was probably just "something going around" and Nikki was sent home.
Now weeks later Nikki was still off of work sick and unable to perform her normal daily routine. She noticed very abnormal weight and muscle loss, was often too weak to drive so she went back to the doctor. They found multiple problems in her blood tests, and she was referred to see a Rheumatologist, but he to didn't have an answer to Nikki's problems. After more testing she was diagnosed with "possible Lupus" and was prescribed a strong daily antibiotic to try for a year and maybe indefinitely. But Nikki and her family felt that a possible diagnosis was enough to be taking something so harsh for the rest of her life, and they chose not to settle.
Specialist after specialist and testing after testing, it became evident that it was not Lupus. A Doctor then suggested that Nikki should be tested for Lyme disease when Nikki mentioned being bit by a tick back in high school. Living in Ontario, one of the highest risk areas in Canada for tick borne diseases, Nikki grew up always outdoors hiking, cottaging, and hanging by the pond in her backyard. But unfortunately, and as with many Lyme Disease patients, the Ontario Lyme test came back negative and Nikki was left again frustrated and suffering with no answers. At this point nearly a year had gone by, Nikki had lost her job due to her illness and with nothing left to do she had to job search in order to support herself. Because she wasn't getting any answers, she continued to live life as normally as she could. This is when Nikki started her tattoo apprenticeship, where she could use her artistic ability but have more flexible hours and not be on her feet all day.
Two years had now gone by, and Nikki's health was continuously deteriorating. She had seen roughly 12 Specialists at this point with no answers and her weight was still declining. At this point tattooing became very hard, causing so much pain in her wrists, arms and neck that she struggled to drive herself home from work. This left Nikki no choice but to put her tattoo career on hold, and at this point was told that her health should be her full-time job.
Within these few years Nikki's immune system became suppressed, and had suffered from awful chest and sinus infections and pneumonia multiple times which would last months because her body is too weak to fight it off. She had a low-grade fever almost every day, developed insomnia, experienced terrifying heart palpitations regularly, and her nervous system began to become affected which causes tremors and other symptoms. At this point she felt so hopeless and lost in what to do next, her brain fog and memory loss had gotten much worse, she had lost 25-30 lbs, and after doing any fun activity with her family or friends, days would be spent in bed recovering often with IV. But we continued to push for answers, it was so incredibly hard for us to watch a healthy, athletic, bubbly, and hilarious Nikki become someone consumed by and unexplained illness and unable to live a normal lifestyle.
Our family spent these years doing endless amounts of research as many would for an ill loved one. Over and over again we came back to many articles and cases of Chronic Lyme Disease that develops and worsens over time. Many cases people do not even recall ever recognizing a tick bite. We learnt that similar to many other diseases, there are stages to Lyme and it is a very complex and unrecognized disease that affects many people in different ways.
Recently Nikki was sent for a brain MRI. The results were extremely abnormal for a woman her age and were compared to the brain of a female age 60-70. This brought us back to the possibility of Lyme as Nikki's memory and brain fog were worsening...
We brought Nikki to a Hematologist who asked if Nikki had been tested for Lyme Disease as well as the other co-infections which a tick will often carry and transmit. We explained she had pulled a tick off her leg back in high school, but her recent test came back negative. The specialist asked if the testing was done at home in Ontario, and proceeded to inform us of the number of false negatives that Ontario testing can bring. He explained that in Canada testing is only accurate for a short period of time immediately after contracting the disease, and in Nikki's case as in many others that he had seen, it had been years now and we should consider getting a Lyme test done in the U.S which was much more advanced.
We went home and immediately looked into this and asked her doctor his opinion. Is it true? Is it worth paying $1500 to take a second Lyme test? He informed us that a few of his patients have contracted Lyme, and those who were bit years prior to the test also had a negative test in Canada, but a positive diagnosis with the more specific and advanced American testing. We were connected with a few people from our hometown who suffer from Lyme, all of which had the same thing to say about the testing.
Days later we ordered the test, and sent the kit back to a highly recommended Lab in America. A week later we received Nikki's test results, which came back positive for Lyme disease, a co-infection called Babesiosis, and a genetic disorder that doesn't allow the immune system to differentiate good from bad bacteria. Unfortunetly also showing the Lyme and infection had been in her blood for a very long time.
This was a very bittersweet moment, as we were all so relieved to find an answer and move forward, but also so incredibly sad Nikki has such an awful and complex disease.
Her Doctor has done the best he can to help, and sent us to a Lyme specialist in Toronto. Unfortunately, Nikki's referral was denied because they couldn't accept the American test and only take people with positive Canadian results. This is the case for almost all Lyme specialists in Canada, along with very little funding on the testing and treatment, and lack of awareness. It's terrible that people cannot be helped or even recognized as ill by the health care of their own country.
Canadian's are left no choice but to travel for treatment and pay anywhere from $50,000 - $100,000 just to help treat the Disease. After that they have to continue with weekly treatments (also not paid for by Canadian health insurance) and costly supplements to take daily.
Nikki's journey has taken her to Florida for treatment rather than Germany so she can be closer to her family in Canada and in the Caribbean. The Lyme Disease Treatment Center that she is attending focuses on a hybrid of conventional and alternative medicine that promotes holistic healing for the patient, while addressing the underlying infections and toxicities. She began costly treatment this week that includes daily IV treatments, Exosome Mesenchymal Stem Cell Therapy, Bio-Electric Magnetic Energy Regulation Therapy, Oxygen Therapy, and several other methods of treatment.
Seven years ago, Nikki pulled a tick out of her leg, not knowing how long it had been there for. Seven years of pain and trying to convince people it wasn't all in her head. It kills us that Nikki has to go through this, and we will do absolutely anything and everything we can to help her feel healthy again to continue living her life with minimal symptoms. We're hoping Nikki's story can help bring awareness to this complex Disease and help others find an answer as well.
Any help we can receive is so greatly appreciated! Even just as simple as sharing Nikki's story as we try to spread awareness for Lyme diagnostics and treatment in Canada.
Thank you kindly - from Nikki & her family