Help my son fight Lyme Disease

Hi my name is Denise and I am Jason's mother. We are fundraising to help Jason with the high costs he is incurring to fight Lyme disease. All Jason's medicines, treatments and bloodwork are all costs out of pocket. We will be using the money to help to pay for whatever he needs for his fight. So far, we have spent over $100,000 on different doctors, treatments, testing, and medications. Jason's bloodwork has to be done here and sent to Germany & the U.S for analyst as Canada is very far behind in testing and treatment. Jason also has many co-infections that go along with Lyme that we are fighting as well. Please read the story below of Jason's journey. If you can help in anyway, it is greatly appreciated.

 

 

From the outside, twenty-eight-year-old Jason Bailey from Ontario seemed to have it made. Born in Brampton, he moved with his mother and younger brother to Orillia after his parents separated. One of two boys raised by a single parent, Jason had your typical Canadian childhood full of outdoor activities and competitive sports. He played AAA hockey through the winters and Lacrosse through the summers. Playing for the Brampton Excelsiors, Brampton Battalion, Orillia Kings, and The North Central Ontario Predators. Jason was also a multi-sport athlete at Patrick Fogarty Highschool. Through his later teenage years and into his early twenties, summers were spent playing golf and tennis alongside work in sales and events management for companies such as Tough Mudder, the London Knights Hockey Club, The Andy Blackwell Memorial Golf Tournament, and the Rogers Hometown Hockey event. He later Graduated from Fanshawe College with a diploma in Business Marketing to take up a job as Manager of the Orillia Ball Hockey League (OBHL).

 

 

Jason appeared to be living his dream. But all was not what it seemed. Despite an apparently healthy, active lifestyle, at just 17-years-old Jason was secretly battling what he was told was heat-induced cholinergic urticaria — his normal active lifestyle was causing him to overheat and making him sick. A faulty sweating process caused a rash of tiny red wheals — more commonly known as hives — to appear all over his body. Combined with hypotension (low blood pressure), Jason was not only in discomfort and pain from the rashes but would also experience episodes of fainting. For more than two years Jason had to suffer through these debilitating symptoms before he was finally able to control his affliction and get back to a relatively normal, active life. But the aches and pains in his joints and muscles which had coincidentally began at around the same time, continued to plague him, and it wasn’t long before some of those same neurological symptoms started again in earnest.

 

By the time Jason graduated from Fanshawe College in 2016, the aches and pains in his muscles and joints had been joined by fatigue, severe headaches, brain fog, memory loss, trouble concentrating, and blurred vision, to name just a few. After just a couple of years working for the OBHL, Jason was struggling to cope with daily activities. When the business changed hands, Jason made the tough decision to step down from his position and concentrate on his well-being; it was time to go back to the doctors and get to the bottom of his rapidly declining health.

 

But rather than helping him recover, this time away from his job wasn’t as relaxing as he had hoped; heart palpitations, sporadic bouts of dizziness, trouble catching his breath, Jason was also now experiencing issues with his nervous system. As well as the ongoing pains, aches, blurred vision, and other neurological issues plaguing his body, every day was a struggle just to get out of bed. The fear of the unknown was adding to his anxiety and depression. Things seemed to be continuously getting worse. It all came to a head when one day, driving to see a friend ,Jason had to pull over to call an ambulance; blurred vision, numbness in his extremities, light-headedness, and trouble breathing, it was terrifying. Jason decided enough was enough. It was time to seek out a new doctor.

 

Despite telling this new doctor about the incapacitating additions to add to his increasingly long list of symptoms — which now included tremors, night sweats, confusion, irritability, insomnia, and weakness along with nausea — his blood tests came back normal except for a slightly underactive thyroid (hypothyroidism), which Jason felt didn’t explain all of his ongoing symptoms.

 

For Jason, the nightmare seemed like it would never end.

 

Over the subsequent months, Jason continued to experience the same debilitating symptoms—instead of feeling better, he was getting steadily worse. Now completely unable to work, Jason was fighting every day just to stay alive. After multiple emergency hospital visits and blood tests all coming back normal, Jason demanded an MRI scan on his brain in the hopes that it would show something, anything, which might point to the cause of his increasingly miserable existence.

 

Jason continued to fight for additional testing over the next year and a half, and after at least 50 visits to the hospital and myriad medical examinations including bronchoscopies, endoscopies, ultrasounds, chest X-rays, ECGs, and even bone scans, seeing various specialists from cardiologists to rheumatologists, everything came back normal. But nothing about Jason’s symptoms were normal. His symptoms were becoming unbearable.

 

His family doctor said all his symptoms were pointing to fibromyalgia or chronic fatigue coupled with depression and anxiety. But despite trying to get on with his life by volunteering to help coach a local hockey team, Jason was still unable to exercise the way he used to. He struggled to even drive due to the random dizziness, confusion, and excessive fatigue. Despite taking his prescribed medication for pain and depression, his symptoms persisted. There had to be another cause. Perhaps something less common. Whatever it was, Jason knew that there was something more sinister going on in his symptom-ravaged, decimated body than the diagnosis he had been given.

 

In desperation, Jason scoured the internet for months for answers. After reading some positive reviews, he decided to visit a naturopath. Using a non-invasive, non-toxic, holistic approach to medicine, this new doctor’s recommendation on what he was suffering with was completely unexpected. None of his previous doctors had ever mentioned it before. He’d never been tested for it. Was this the disease that had been plaguing him for so many years?

 

Until they could be sure, Jason first had to be tested for Lyme Disease. When his family doctor refused to refer him to have his blood tested citing a lack of clinical evidence for Lyme Disease, Jason was left with no choice but to go back to the naturopath. As his provincial health insurance (OHIP) doesn’t cover the private, out-of-province testing, Jason had to foot the extortionate bill himself and after having his blood drawn at home in Ontario, it was sent off to a lab in Germany. After two years battling for doctors to take his symptoms seriously, Jason finally had his answer — his results came back positive for Lyme, as well as several co-infections which are often present alongside those who test positive for Lyme Disease.

 

A tick-borne disease, Lyme is caused by bacteria (Borellia burgdorferi, B. mayonii, B. afzelii, B. garinii) carried by the blacklegged tick. These bacteria are passed from the tick to the person when the tick bites. Ticks can carry multiple bacteria, viruses, and fungi all at the same time, so those with Lyme often have other infections, called co-infections, transferred by the tick’s bite.

 

Jason is not alone. His story is just one of hundreds of cases in Canada every year which go misdiagnosed and untreated, letting the bacteria to spread to other parts of the body causing nerve and tissue damage. Chronic or post-treatment Lyme disease with ongoing pain, fatigue, and neurological symptoms such as difficulty thinking, concentrating, memory loss etc., is a contentious issue amongst physicians and not officially recognized by many regulatory bodies. But with these severe, chronic Lyme symptoms common to a number of other diseases such as autoimmunity, Multiple sclerosis (MS), Chronic Fatigue Syndrome (CFS), and the antibody tests for Lyme infection targeting the bacteria in the family Borrelia being prone to false negatives, Lyme disease is thought to be vastly underdiagnosed in Canada. There is hope that with ongoing research being published in the medical literature, and with increasing visibility and awareness of chronic Lyme sharing stories like Jason’s, we can prevent others in the future from suffering through the same nightmare as Jason and so many others.

 

But Jason’s battle was far from over. Despite his positive tests results from the lab in Germany and California, his family doctor still refused to concede that Jason might, after all, have a tick-borne disease and simply ordered more generic blood tests — none of which would be able to detect that he had Lyme disease. Having spent thousands of dollars getting diagnosed, his test results were not recognized by his family doctor in his home province, as they had been done out of country. So, back to scouring the internet, Jason set off again in search of help, looking for a way to be treated for Lyme Disease plus co infections in his home province. Knowing the financial cost of seeking private healthcare would likely be steep, it was nothing compared to the cost of living with his debilitating symptoms. For Jason, there was no other choice.

 

Much to his amazement, Jason discovered a private clinic in Ontario that helped diagnose and treat chronic diseases including Lyme disease and its co-infections, involving a team of doctors, naturopaths, nutritionists, and other health and wellness specialist. Jason was able to get a referral from a different family doctor with just one phone call, and is finally on his way to a healthier, pain-free future.

 

Though Jason has had only a few appointments at his new private clinic to date, he is finally starting to find a way forward through his illness. A recent diagnosis of Postural Orthostatic Tachycardia Syndrome — more commonly known as P.O.T.S to go along with Lyme and its co infections— has provided some answers to longstanding questions around his multitude of symptoms. Often mistaken for an anxiety disorder, P.O.T.S is highly linked with those suffering from chronic or post-Lyme syndrome. It dramatically affects day-to-day life, with some of the more debilitating symptoms including tremors, lightheadedness, fainting, bouts of syncope and hypertension, severe fatigue, blurred vision, and brain fog. Jason has experienced a substantial decline in his overall health over time, suffering with the symptoms of Lyme, co infections, and P.O.T.S.

 

Despite some positive moves towards a healthier and more active future, Jason’s journey is far from over, as treatments for Lyme, co-infections, and P.O.T.S. are ongoing. For the past two years, Jason’s symptoms have increased in severity to the point where he can no longer drive, go to work, nor have much of social life. Merely getting out of bed each day is a struggle. Barely able to walk properly or speak coherently, plagued with memory loss, confusion, and bouts of fainting, Jason still has a long road ahead of him. But with a team of health and wellness specialists behind him and a treatment regime in his immediate future, there is finally some light at the end of what has been a very long, dark tunnel. However, unable to work, Jason continues to rely on family for financial, physical, and emotional support. Due to the necessity to pay thousands of dollars of his savings to get some answers when his own doctors failed him.