Riley's Journey with Lyme

So many many people have been asking for details regarding Riley’s health.  
Below is a summary of the past year....a long and worrisome path as we have struggled to find answers regarding his progressing ill-health.
Riley has been very sick for over a year now.  In October 2009, he came down with what looked like a nasty case of the flu. However, days, weeks and then months passed, and he continued to get worse, not better. He has been plagued with a constellation of alarming and varied symptoms that continue to grow more severe and are now completely disabling for him.
Some of these symptoms include: debilitating fatigue and weakness, low blood pressure, dizziness, fainting, irregular heart beat at times, unrelenting nausea, headaches, continual ringing in his ears, rashes that come and go, bowel problems, severe abdominal pain and bloating, muscle and joint pain, burning eyes, insomnia (he averages 2-4 hours of sleep per night), night sweats and body chills, hands and feet that get very cold and purple, sensitivity to light, sound and scents, problems with concentration, memory and word retrieval, stinging, tingling, and numbness in his face, neck and hands that progressed to bilateral facial bell's palsy (paralysis) these past 3 weeks, sore throat and runny nose (without other cold symptoms), constant testicular pain (ugh-too much information) ….the list goes on, but I think you get the idea.  He has also lost considerable weight (30+ lbs), and has been unable to go to school or participate in any sports or other activities.
Although Riley is by nature a very optimistic and positive person, his illness has not allowed him much contact with friends, or to be outside our home except to go to medical appointments. He missed the majority of grade 11 last year (finishing 4 of his 8 courses-mostly done at home with accomodations made by the school) and has missed all of his grade 12 year so far. As you can imagine, this is very difficult and is taking its toll.
We have been through a gruelling year of hospital visits, appointments with specialists, endless pokes in the arm, and other diagnostic procedures, hoping to get to the bottom of why a healthy, happy, robust 16-year-old suddenly becomes and remains very ill.  As all the tests rolled in as “normal” we were getting very discouraged…Riley was getting worse.  Many diagnoses were pursued and ruled out.  We kept hearing that he must be experiencing a “post viral episode”, and he would get better with time.  This has not been the case. 
As we travelled from doctor to doctor, carrying around a detailed list of Riley’s symptoms (42 of them), we did not realize, nor did any of the doctors (19 of them) that this list was actually writing the story of the progression of Lyme disease. 
To make a long story…”shorter”, in July Riley was diagnosed with Lyme disease, as well as 2 co-infections (also from a tick bite).
Although we are very grateful to finally know what we are dealing with, Riley is facing a treatment regime that is lengthy, very aggressive and unfortunately unavailable within the Canadian medical system.
This is where the plot thickens…. The diagnosis of Lyme disease is a controversial and much debated topic in medical circles.  Because of this controversy- recognition, adequate testing and treatment of Lyme disease in Canada is virtually non-existent.
What we have experienced with Riley is:
  • A lack of knowledge (or misinformation) as an obstacle to considering Lyme disease as a possible diagnosis (based on his symptoms).
  • An unreliable screening test in Canada- that produced a false-negative result and a refusal to conduct the more sensitive tests.  In fact, it was not once suggested that the screening test be even done- as lyme disease was never considered.  I had to ask several times (to several doctors) before this test was done- but I kept hearing "Oh no- it can't be Lyme disease."
  • An outright dismissal of the more sensitive and thorough tests conducted in the USA (which in Rileys case confirmed the presence of Lyme disease and 2 co-infections).
  • A complete denial and unwillingness by specialists here to provide Riley with the antibiotic treatment necessary to kill the Lyme bacteria that have invaded every part of his body and taken away any quality of life for him.  
Seeking medical attention in the USA where many Lyme literate doctors specialize and successfully treat patients like Riley has been in our view, our only option.  We have, and continue to pursue every avenue offered to us here in Canada-however, no other possible diagnosis or treatment suggestions have been offered  Every specialist agrees that Riley is very, very illwith what they dont know - BUT ITS NOT LYME
Under the care of the specialist in the USA, Riley has begun a very aggressive treatment regime. Before he begins to improve, we were told to expect a worsening of symptoms  (called a Jarisch Herxheimer reaction- see lyme lingo on blog homepage) the significant bacterial load in his body is vigorously attacked by the medications.  He is definitely in the worse part now and it is very, very difficult.  Please read blog posts for updates on his symptoms and treatment progress.
Treatment is expected to last at least 12 months.
Thank you for taking the time to read Rileys story as he battles this hideous disease. Your thoughts, prayers and support mean so much to all of us and give Riley the hope and drive to keep fighting.  He is very much looking forward to the day when he can return to school, play a round of golf and get back to life as a healthy, thriving teenager.

We will use this blog as a way to keep you updated on his progress as the weeks and months progress.