Cycle For Lyme  
The Cross-Ontario Bicycle Ride Raising Lyme Disease Awareness
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THE LASER CLINIC

 

 

 

 

James Christie's Cycling Progress

The total approximate cycle distance is 2,000 kilometers.  It is the goal for James Christie to ride this entire distance, 66 kilometers per day for 30 days.  The follow chart tracks his progress.

 
Day  Date  Approximate Location  Km per day / to date  Distance Cycled  Total Cycled
 
  1  May  21  5k northwest of Dundas           66 / 66

 71.6

71.6 

 Comment  That was the best first day it could have ever been.  Great weather, good drivers around me.  I would first like to thank my family and friends there to send me off.  I would then like to show my appreciation to all the people suffering with Lyme disease that have emailed me in the last couple weeks.  Hearing your struggles, your encouragement and especially your thanks has really meant a lot.  And, we had a wonderful man stop and make a point to speak to us tonight about a good friend of his that recently pasted away from Lyme after a 4 plus year battle with Lyme.  To witness his frustration at what his friend went through and the blatant neglect that his friend received from our healthcare system.  These are the stories that need the ear of our politicians.  All from the bite of such a tiny, slow-moving creature. An finally, Magic and Kate, herein known as "the kids", had a great meal courtesy of East Side Marios.  The email received was "ES Marios Rox."            
 
  2
 May  22
 10k north of Simcoe
          67 / 133
 70.2
 141.8
 Comment
The first 36 km were a breeze for the body and good for the mind. The second 34 not so much. A wind came up from the south and I was headed straight into it for the last 20 -25 km.  It really puts the muscles to the test and makes me realize how lucky I am to be able to do something that literally months ago I would never have dreamed I could do. 
 
We had a man in a big water truck who saw the "Ride For Lyme Disease" sign on the back of the RV stop and give us $20. I didn't go into detail with him about his connection to Lyme, but what was clear was that he certainly was of the opinion that what we are doing is important and long over due.  Less than an hour later, just outside St. George, Ontario, I spoke to a woman who also was fully apprized about Lyme and proceeded to vent that something has to be done to correct the way that our healthcare system is ignoring so many people with Lyme disease.  A couple of hours later I was lost in Brantford (I actually managed to get lost twice in Brantford) and asked a woman for directions. After putting me back on course I explained what I was doing, and without skipping a beat, she described how years ago her daughter had a red rash on the inside of her left leg (that is the same as me) and that the doctors didn't know what it was.  She then explained that the doctor cut it out and her daughter still has the scar.  She then said that they were later told that it was Lyme disease and her daughter was treated with antibiotics.  I didn't let getting lost twice stress me out, and ended up meeting someone who told me the most incredible story about her direct connection this disease.        
 
  3  May  23  4k east of Aylmer           67 / 200

 58.8

 200.6

 Comment This morning started off with wind and ended with wind.  I unfortunately had to pack it in at only 46 kilometers because the wind was so strong from the south west it was knocking me off the road and after hitting the soft shoulder of Hwy #3, it was no longer safe for biking.  None the less, it likely took more energy today to travel 46k than it took to cover 70k yesterday, so the accomplishment feels good, sore, but good.  I received a donation today from a man named Todd.  I subsequently found out by email that Todd was one of the numerous people that cycled with me on Saturday.  We only spoke for a minute or so as we left Mississauga and entered Oakville, but that is a minute that I will not be forgotten.  Todd, thank you for both the encouragement Saturday and for the donation today! 

Update: After an rain-free thunder and lightning display passed over, the wind dropped off considerably.  And with that, I ended up putting another 12.8 km on the bike, just enough to meet the 200 km goal. 

 
  4
 May  24
 New Glasgow
          66 / 266
 73.8
 274.4
 Comment
I have to admit that I was like a snail getting myself moving this morning.  It would appear that after yesterday, one look at the wind outside and any motivation I had went south.  The ride into Aylmer was without a doubt, the hardest yet.  We arrived in St. Thomas and I decided to bypass the town and start again on the west side.  This turned out to be a good plan and I put 35 km on the odometer in record time.  To top up my day, back in St. Thomas this evening, I cycled over 18 km through and around town to end on a very positive note.  And we saw and photographed the most beautiful herd of cows ever.  Kate promises to eventually get one of them up on the blog. 
 
Starting on the downside, this morning was tough, however, by the end of the day, it was a great sense of accomplishment.   We were waiting at a road construction stop, and ended up speaking to the flagman.  When he found out what we are doing, he immediately grabbed for a five dollar bill and wished us all the best.  The general open consideration for what we are doing is such a wonderful part of this journey.       
 
  5
 May  25
 Port Alma
          67 / 333
 60
 334.4
 Comment
Started off with a great 18k ride in the morning.  The weather, not my old body believe it or not, ended up being the limitation to not finishing my daily goal.  Somewhere about 20 km east of Blenheim, I skies opened up and I was hit with heavy rainfall that soaked me to the core.  After about 45 minutes of cold wet cycling, the rain passed and I was able to get into a layer of fresh dry clothes.  The rain managed to keep at bay until a kilometer south of Blenheim when I was once again hammered by rain.  When that the day ended on a soggy note.
 
Early in the morning I mentioned Lyme to an employee in the St. Thomas Walmart.  I instantly received a reply back that a very good friend of hers had Lyme.  When I asked how the person was doing, the reply back was that he was doing great because he had been diagnosed early, treated with antibiotics, and was cured with no long term problems.  It would appear that it only took 5 days to hear back from a stranger, the importance of the message that Cycle For Lyme is trying to promote - that if doctors get themselves up to speed about Lyme and treat patients in a timely manner, people have the opportunity to return to a normal healthy life.  As far as I am concerned, the fact that Lyme has been made such a politically sensitive topic is the main reason why doctors rule out the making the diagnosis.  Doctors simply do not want to risk their medical practice or their careers by getting themselves involved in a diagnosis that is not being accepted as part of regular mainstream medicine.  Lyme, even in the acute and fully treatable form, remains the elephant in the room.
 
I also had a nice talk with a police officer in St. Thomas about Lyme.  The one thing that always amazes me when I explain what I am trying to accomplish is the positive and upbeat responses that I receive back.  It is great to feel how fast a couple of seconds of positive can put a smile on your face for hours.  I also met a store owner in Blenheim who agreed to distribute a healthy pile of my postcard flyers out to her community.  Not only was she a regular cyclist, but in fact she had her own story about Lyme.  Her dog was bit not by one, but by 3 ticks, but when she tried to get them tested for Lyme, she told me that testing would not be performed because the ticks bit a dog, not a person.  This is an issue that is completely inappropriate.  Whether found on a dog or found on a person, this country lacks any sort of proper statistical testing regarding the frequency of Borrelia burgdorferi in ticks.  By refusing to test ticks that are delivered by the public, our healthcare system is ignoring the opportunity to get a better handle on the spread of this infectious disease.  Ultimately, the fact is that the first reported case of a Borrelia infected tick occurred in Kenora, Ontario, in 1993.  Ironically, the tick was removed from a dog that had never traveled outside the Kenora area.                           
 
  6
 May  26
 4k west of Tilbury
          67 / 400
 10
 344.4
 Comment
Despite the fact that I have only cycled 10 km today, it was just the most exciting day for us.  We went to and did two school presentations to students.
 
I would like to thank the principals of both W.J. Baird Public School in Blenheim and Wheatly Area Public School.  The students were great.  Not only were they polite to tolerate my unscripted presentation, they asked some great questions.
 
I also had the opportunity to speak with and interview one of the teachers who actually has a 19 year old daughter who has been misdiagnosed with Lyme for approximately 7 years.  Interviewing her was a like stepping back in time on what I have gone through.  As she kept speaking, she kept bringing things that the good side of my brain had suppressed from my memory.  All the horrific issues that I dealt with many years ago were such a parallel to the struggle and hardships that she has had to endure.  To speak to a 19 year young woman with such a positive attitude and healthy sense of purpose and determination was such an inspiring thing.  Watching her speak (and you will on the blog shortly) reflected the exact same feelings that made me so determined to put Cycle For Lyme together.  The greatest thing I gained today was a very graphic reflection of what I have gone through in the past two decades, from someone else's eyes. 
 
The only downside to the day is that I so wanted to put another 10 or 15 km on the bike this evening, but between a wind off Lake Erie and the rain, I am going to have to call 10 km a success - I believe it was.
 
  7
 May  27
 5k north of Wallaceburg
          66 / 466
53.2
 397.6
 Comment
I had done a little complaining last night about having only completed 10k yesterday.  The quick and stern response from the kids was that this wasn't about whether or not I cycled 66 km per day but rather getting the message out about Lyme.  Although I agreed, by 6:30 this morning my brain was still arguing the point.  So by 7 am, I was spinning my way to Leamington, Ontario, getting in the k's that I deem so vital.   However, with no fixed destination, I ended up on a country side road somewhere northwest of Wheatley spinning with not a thought in my head.  After 20 years of living day by day, simply trying to get through life, not live life, I again found myself thinking about what my wife always says about riding her horse.  Heather has always said that when she is riding dressage, all the stress of a career, the stress of an endlessly sick spouse, and as well as having a child, simply melts away the 800 pound gorilla that she carries around day to day (I have likely been at least 500 pounds of that gorilla).  As I came back into Wheatley, I started seeing kids walking to the very school that I spoke at yesterday.  In a flash what I was told last night by Maciek and Kasia hit me once again - it isn't about the k's I spin, its about the knowledge about Lyme disease that gets spun forward and the knowledge that less people will end up with an 800 pound gorilla on their shoulders. Oh, and by the way,  just under 24 km done before 8:30 AM - and when I got back the RV.......Maciek and Kasia.......still sound asleep.  OLD GUYS ON BIKES ROCK!! 
 
We had another good day in gymnasium in Tilbury, Ontario, speaking to students.  I know I am repeating myself, but kids sure can absorb information, and respond with good questions.  It never stops amazing me how they pick up on what I miss and ask questions that provide great topics that I have not expressed.  Thank you for listening Tilbury Area Public School.
 
I did another 29 plus kilometers late this afternoon.  North of Chatham in Hwy #40 was the most aggressive driving I have seen yet.  Maciek did a great job snugging up the distance between us, and really made me safe.  I called the truck and trailer my 9,000 pound buffer zone.  On the flip side, a white Ford F-150 passed me and slowed to a stop.  As I passed by I got the thumbs up from the driver and moments later a young man stopped the kids and gave a donation.  A very moving and much appreciated act that will never be forgotten. 
 
Also on the road to Wallaceburg, I had at least half a dozen cars slow down, honk, and wave.  These are the random acts of kindness that push me past the pain and keep me spinning my Specialized cogs down the road.      
 
  8
 May  28
 Highland Glen
          67 / 533
 70.5
 468.1
 Comment
This morning was most unmotivated day for not wanting to cycle in the rain.  The good news was that although it started with damp air and wet pavement, the rain never came.  I cycled 49k from Wallaceburg to Sarnia on County Road 31.  What an awesome road on a Saturday morning. The few cars that were on 31 were as respectful to my cycling as it gets.  
 
When we reached Sarnia we met with another of the strongest Lyme sufferers there could ever be.  Christine Heffer is an inspiration to anyone suffering with Lyme.  She has the determination to do what needs to be done to get our healthcare to stop denying that Lyme infected ticks are a part of our environment and that refusing to make it part of the general publics consciousness is more than just a shame, it is outright disgusting.  The interview we did with Christine will hopefully be up on the blog in a couple of days - it can't be missed. 
 
The balance of my cycle tonight was through Sarnia.  I set aside my usual cycling skills for part of the balance to cycle with the kids. Maciek and Kasia held me back, but it was to be expected that kids in their 20's can't keep up to a fit old man infected with Borrelia burgdorferi.
 
For those who haven't checked the blog, you will see that county road 31 was the perfect road for a little cycle high-jinx and the three of us aim to please.
 
Prior to writing this tonight, I spoke to my son Gavin at home in Newmarket.  When I told him 70.5k today, he said it was good that I was no longer slacking off like the last couple of days.      
 
Please note - the kids had to help me with my spelling tonight.
 
  9
 May  29
 Bayfield
          67 / 600
 101.1
 569.2
 Comment
Wow, what a day. The weather started off wet and dreary but turned out to a nice sunny afternoon. The thunder and lightning didn't start until 7:30 pm in the evening.  As far as the ride went, I lucked out.
 
The bad news was that Kasia, our "manager", had to go back to work in Toronto for tomorrow, so we put her on the train in Sarnia at 6 am this morning.
 
The good news is that it appears that Kasia has been holding me back from my full potential (just kidding), because today I cycled from Sarnia to just south of Goderich, at total of 101.1 kilometers........who is the slacker now Gavin Christie.
 
It may be no big deal for an athletic young adult to spin 101.1k in a day, but quite a milestone for a 47 year old guy who less than a year ago was sleeping 18 to 20 hours a day for days, even weeks at a time.
 
While videoing Maciek swimming in Lake Huron (I have it recorded because I couldn't quite believe it myself), we met three woman on the beach who all knew something about Lyme but as with most, did not know the truth regarding the devastating effects it can have on one's life and that of one's family. Ladies, thank you for the great talk!
 
It also occurred to me that I need to thank Paul at BikeSports in Newmarket, Ontario.  Paul set my Specialized Secteur Sport up about 5 days before I left for this trip, and I must say it has been flawless thus far.  It took some time, but it was well worth the wait. Thank you for your attention to detail Paul.
 
  10
 May  30
 3k south of Kincardine
          66 / 666
 66.5
 635.7
 Comment
It is incredible where information about Lyme comes.  Maciek and Kasia are here for a one year work visa from Poland.  This morning while checking news from back home via internet, Maciek found a major news story about Lyme.  It turns out that in Poland, the "Lyme Bus" travels all around the country reinforcing what is already well known - that Lyme is real and that it needs to diagnosed and treated quickly or it can become a serious, untreatable disease.  Furthermore, they have what we would refer to as a booster shot that the "Lyme Bus" has for those who want it. 
 
So where does this fit with the Canadian approach of deny, deny, and lie.  Including myself, I know 4 people who our healthcare system has either performed major surgery on or attempted to perform on people that were actually infected with Borrelia burgdorferi, the bacteria that is Lyme disease.  During our recent federal election, I was annoyed by Jack Layton's commercials about getting us more doctors.  I emailed Jack's campaign, told my story, and even gave them my website.  I told Jack, we don't need more doctors, we need better doctors. To this date, I never have received any response from the Layton campaign.
 
We uploaded the first rant done to date this morning - it is a window to the frustration that I see to a healthcare system that is flat out lying to the public out the serious disease that everyone seems to have known about for a long time. 
 
Oh, and I spun my Specialized Secteur 29 plus clicks this morning.  We had to stop for a while and miss some k's because of some dense fog.  It is sunny and hot now, but I will hopefully be back spinning my wheels.   
 
Evening - Did I say sunny and hot - holy cow - it was a scorcher out there today.  At first I could smell bacon frying.............then I realized it was me......
 
We did an interview with the Kincardine Times early afternoon - Thank you to the reporter, Jennifer, for a job well done.
 
We also went and spoke to a couple of staff members at Inverhuron Provincial Park.  They were great and provided us with what the provincial parks are providing park campers with every visit.  The unfortunate thing is that ticks don't restrict themselves to provincial parks and the provincial government as a whole needs to provide this type of information for all of the public - everywhere.
 
I finished my 66k tonight in Port Elgin.  Maciek used time-lapse photography to record the sunset.
 
  11
 May  31
 Allenford
          67 / 733
 67.6
 703.3
 Comment
Morning - Stress with a capital S.  This is the first morning that I woke feeling sick.  I didn't sleep good at all and haven't had such aching legs, back, shoulder, and stomach.  However, despite it all, considering the forecast for extreme May heat today, I was spinning toward Owen Sound before 7 am. 
 
The only genuine peace I had this morning was when I re-routed my trip and took a couple of back roads that I knew from a family trip to South Hampton last August.  I remembered Bruce Road 3, Concession 8 W, and the B Line up to Hwy 21 like it was yesterday.  In 10k you travel through an area that you could stop and spend a lifetime.  I had two dogs, one a big lab, the other a tiny little thing, chase me along the tiny stretch of Concession 8 W.   The lab was a issue, I had to crank as hard as I could, but the little dog, that was fun.  Along the B Line you see beautiful countryside with new homes as well as completely dilapidated structures now being used to keep cattle happy and out of the weather.   As you get close to hwy 21, you pass two rows of concrete foundations from a dozen structures long since gone...a part of the changing world we live in.
 
As the sun fried my exposed skin and the sweat poured from me, the spin along 21 to Owen Sound yielded my Specialized's first breakdown.  Without any apparent incident, my rear wheel began to wobble.  After stopping and truing the rim straight again, I had to deal with some sort of chain alignment issue that I really don't know how was started nor how I corrected.  What I do know is that after fighting the heat and the breakdown, the air was blue with some colourful language that simply has not been used until this day 11.
 
By the time we arrived in Owen Sound at 10 am, I had clicked another 50.6 km to my ride. A few hours r & r, and I plan to put the balance on the odometer.
 
Afternoon - Given that Lyme disease has become such a political debate between those who have the disease and those who for whatever reason deem it important to deny healthcare to those infected, it never ceases to amaze me how some people believe that suppressing the facts that Lyme is here in Canada is an appropriate way to deal with those who want to help with public awareness.  What I have now and what I will never lose is the knowledge that someday what I am saying today will be fully accepted and those who choose to turn a blind eye today will eat crow in the future.  To the naysayers - rather than accept the blind rhetoric of a healthcare system hiding from a world of evidence, simply open your eyes, seek the facts, and decide for yourselves. We are not liars, we are not attention seekers, we are not drug addicts nor drug pushers, we are not embellishing the pain that we are going through. Like the very doctor that misdiagnosed me for 17 years said in November of 2010 - ten years ago we didn't know what causes an ulcer, now we know it is a bacterial infection.  Just because my doctor had no training about Lyme and was incapable of diagnosing it, doesn't mean it isn't real. 
 
When a person is charged with a crime, our justice system deems the person to be innocent until proven guilty.  However, if you claim to have dozens of symptoms that are readily accepted in dozens of countries around the world as being the clinical diagnosis for Lyme disease, in Canada, you are simply labeled as being crazy and quite literally end up being refused proper medical attention. 
 
My expectation was that I would have the same rights as the next person whether in an emergency ward of a hospital or in my doctors office, yet time and time again, my rights were secondary to others. Just because many healthcare workers do not have the knowledge or the capacity to comprehend what someone with Lyme is going through, does not give them the right to diminish the patients rights.
 
 
  12
 June   1
 Craigleigh Provincial Park
          67 / 800
 67.4
 770.7
 Comment
Morning -No matter what the weather, how my body holds up, today will be a great day.  My wife, son, and mother are meeting us today and I will be riding a section of today's journey with my son, Gavin.  It doesn't get any better than that.
 
Gavin and I bicycled from Meaford to Craigleigh Provincial Park on the bike trail that runs along an railway line, a total of approximately 25 km.  We got to talk the entire way and I had the opportunity to hear everything I missed in the last 12 days.  It was as good as it gets - thanks buddy!
 
After I cycled into Collingwood, Maciek, my mom, Heather, Gavin, and I had a late lunch and spent some time together before I headed off to Wasaga Beach where I ended my day 67.4 ahead of yesterday.
 
The wind was wild all day. I ended up being hit with gusts from behind, the side, and from the front.  And finally, to top off the perfect day, I had my first flat tire which ended up being a sliver of metal that went through the tire, the flack jacket, and the tube with no difficulty at all.  A quick patch and ready to roll.
 
It was great to see my family and have a bit of a break (although I didn't slack off Gavin) from the routine that has developed.           
 
  13
 June   2
 7k west of Coldwater
          66 / 866
 37.4
 808.1
 Comment
I must say I would have preferred to have cycled more than 37 km today, but given the wind conditions as well as the hills that my old body had to peddle up, my legs are of the opinion that they cycled at least 100k today - and who am I to argue. 
 
It was 8 degrees Celsius this morning and I am guessing that the wind was at least 50 kilometer per hour.  That would be fine if the wind was stable, but it was gusting from all directions as it swept through the hilly terrain between Wasaga Beach and Coldwater. My feet went from freezing will no toe warmers on to boiling with the warmers.  It was a crazy ride.  Two days ago I was cycling in record temperatures of 29 degrees, today I was cycling in 8 degree weather.  If this isn't extreme I don't know what is. 
 
We managed to get into speak to the students at Huronia Centennial Public School in Elmvale, Ontario.  The staff and students were very receptive and it was a great opportunity to spread the word further about Lyme.  Thank you very much for listening Elmvale.
 
We detoured off the main road to visit Big Chute, the marine railway that connects boats through the Severn Waterway System.  There will be a couple of photos up on the blog later.  While at Big Chute, I took the opportunity to spread the word to a couple of small groups of people.  It always amazes me that people that know about Lyme know the basics but rarely seem to understand the serious impact it can have if not treated quickly.  Most people just simply do not realize that such a tiny little creature as a tick can be such a life changing and debilitating beast.
 
  14
 June   3
 10k north of Nobel
          67 / 933
 102.8
 910.9
 Comment
Today was one of those days when you realize that you are so close to something that you lose perspective.  We started out from Mactier, Ontario, just after 7 am and were the 29 km into Parry Sound in no time.  After getting supplies, we went to the town pier and met a man from Mississauga that was looking after a 100 plus foot vessel for a friend.  When I explained what we were doing, his faced literally lit up.  He had a tremendous working knowledge of Lyme as well as various other diseases that ticks are the carriers of.  Furthermore, one of the most matter of fact comments he made was that I must have been diagnosed by a Naturopath.
 
This naturopath comment is something that I have had directed at me many times.  The fact is, I was diagnosed by a Steve O'Neill, a Practitioner of Traditional Chinese Medicine.  What continues to surprise me, whether knowledgeable about Lyme or not, is the shear number of people who have made such derogatory comments about their doctors inability to properly diagnose the illness and how so very many times that people have had to rely upon Naturopaths to identify the problem. 
 
Without a doubt, one of the most frustrating comments made by the people of Ontario that I have spoken to is the rushed feeling they receive from their doctors.  And it is without a doubt that the overwhelming majority of these people are of the opinion that this rushed method of providing healthcare is ultimately why it is taking people so much time to be diagnosed.  The comments I receive reflect the exact reason why I believe my own doctors could or would never have properly diagnosed me in a thousand visits to his office.  The very manner in which my doctor looks at treating his patients is designed to fail.  In every examination room in my doctors office is a sign on the wall that says, "One health complaint per visit." 
 
The very nature of providing a sign with such a narrow minded view of the complexities of the human body speaks volumes a to what the doctors method of public funding is based on.  My doctor wanted me to come in Monday to tell him about my chronic chest pain, then Tuesday to tell him about my chronic migraines, Wednesday about the chronic muscle pain, Thursday about the chronic fatigue, and Friday about chronic sore throats.  Why get paid $40 in 6 minutes when you can get paid $200 in 30 minutes.  Ultimately, by simply refusing to look at the big picture, it is all but impossible for a physician operating with such a self-gaining mandate to ever diagnose a disease as complex as Lyme.
 
It is no wonder that so many doctors hold such open contempt for alternative medicine.  When a Naturopath or practitioner of Traditional Chinese Medicine evaluates a patient, he or she looks at the big picture as the starting point.  How can anyone formulate any opinion in what is potentially wrong with a patient unless then are aware of all the negative aspects that the patient is facing.  It seems like such a basic principle, yet our healthcare system has designed a payment schedule for doctors that promotes the opposite.  I mean really, as our society continues to get sicker and therefore needs to rely on our doctors more, the doctors continue to make more money through more visits, as in my case, without every having to identify what my actual disease was.  The truth is that there really is no money in good health - and the signs in my doctors examination rooms sadly promote the fact.    
 
We also stopped in Britt, Ontario.  For anyone who has read my personal website, www.LivingTheLymeLife.com , yes that is a pun, you will know that the first symptom I had from my July 1989 tick bite was in August of 1989, when I had the worst flu-like symptoms while parked in my boat at the government of Canada pier at Britt.  I was sick for days and when I left the pier the rash on my leg was huge, inflamed, and very sore.  However, at the time, I had no idea that there was such a major connection between the flu-like illness I had just gone through to the thing on my leg.
 
It simply did not occur to me until I was a few kilometers away that the 84 kilometers that I already cycled by the time I got to Britt were the most significant kilometers that I have cycled to date.  To arrive under my own power to a place where the course of my health had taken such a terrible change, was empowering to say the least.  To just sit on the pier with my bike and realize that I have come full cycle from a disease that many simply never recover sure made the day real.
 
I cycled straight through to Grundy Provincial Park.  For the day, the old insurance scamming drug addict guy with MS, Lupus, Chronic Fatigue syndrome, Fybromyalgia, Autoimmune Disease, and the best of all, the faulty heart valve, cycled 102.8 kilometers today,  and I must say loved every second of it. 
 
  15
 June   4
 Cranberry (Hwy #69 at Hwy #522)
          67 / 1,000
 0
 910.9
 Comment
Grundy Provincial Park is at the junction of Hwy 69 and Hwy 522.  My wife, Heather, and my son, Gavin, are driving up to spend the day and night with me and my Specialized gets a well deserved day off.  I will be heading north to Sudbury, sometime tomorrow afternoon.   
 
  16
 June   5
 Hwy #537, 8k south of Hwy #17
          66 / 1,066
 59.6
 971.5
 Comment
3 AM - I guess it had to happen sometime. Of course I had always hoped that any Lyme left inside me would give me a break for 30 days, but that is a tall order for a disease that entrenches itself so deeply into tissue and organs.

It has always been that the more I do, the more I flush the bacteria out, resulting in what I refer to as an "outbreak".  I have to assume that the 102 km push north on Friday along with the wind I peddled into was enough to run my body down to the point where dormant Borrelia burgdorferi had an excuse to have a party in my veins.

In the last 12 hours, I have had classic rotating symptoms. It started about 3 pm Saturday in my throat, went to my sinuses, then gave me what I call the brain fog, and by 8 pm transformed into quite a pounding headache. Now, at 3 am, I have been woken up sweating with a fever and my stomach is on fire with pain.
 
8 AM -  Awake again, the pain in my stomach is still going strong.  I also have upper jaw pain from one side to another.  If there was any doubt (there wasn't), this is Lyme at its finest.
 
12:45 PM - Finally started north up highway 69 to Sudbury.  Not a heavy headwind, but it would have been much easier if there had been no wind at all.  I ended up doing 59.6 km by the time I was at the divided highway.
 
My motivation for enduring the pain was simple.  I simply keep thinking about the people I have met in the last few weeks that are so horribly affected physically by this disease and how I am so dam lucky to be limited to a pain in my stomach.  I don't think I am lucky to be where I am, I know I am.
 
I don't wish what I have been through on anyone, but really, if I could zap what has gone through me in the last 24 hours into some of those at the top that determine what we at the bottom of the healthcare food chain go through, I have no doubt that people like the ones I have met in the last few weeks would no longer be treated as second class citizens, and that finally something would be done to stop the spread of this disease.
 
One thing is certain, pain or no pain, I will be spinning my peddles east from Sudbury bright and early tomorrow.
 
  17
 June   6
 3k east of Verner
          67 / 1,133
 116.9
 1,088.4
 Comment
 
While putting $140 in diesel in the truck this morning I told the woman at the gas station what I was doing.  When I was done, I paid her $140 and got $20 back.  Thank you very much for listening and hopefully you r photo will be up on the blog soon.
 
While in Sturgeon Falls, we met a man who knew all about ticks, all about what to do, all about the lack of knowledge by the public and the lack of knowledge of the healthcare system......he then explained that his wife was from southern Illinois, where everyone is educated about ticks and the realities about Lyme.................Hmmmmm, where have I heard that before.  Canada simply has to pull its collective head out of the sand (or anywhere else it is stuck) and get the information out to the public and get its doctors and healthcare workers up to speed.  Waiting any longer, as far as I am concerned, is nothing short of blatant negligence.  
 
There is now a brand new tourist attraction that will be bringing people into the Markstay, Ontario, area by the bus load.  If you follow highway 17 about 70 meters west of Pioneer Street and highway 17, in fluorescent pink paint you will see the words "Cycle For Lyme 1000 km JGC Magic" sprayed onto the edge of the asphalt.  And in the event you are a police officer and are reading this - I have no idea how it got there..............
 
As I left Queens Park on May 21st, I had many things on my mind.  One of those things was if I could at least do 1,000 km of my 2,000 km route, then as far as I was concerned, Cycle For Lyme would be a success.  Well, to support the success theory, I cycled 116.9 kilometers today, making today the best cycle day yet.
 
We had a good laugh at the Lake Nipissing look out point on Hwy 17 between Sturgeon Falls and North Bay.  I rolled in about a minute in front of Maciek and immediately proceeded to hop up on the nice big flat fence top and take of my shoes so I looked like I had been there for an hour.  Two minutes later, Maciek is out of the truck, camera ready.  30 seconds later I was attacked by at least a hundred black flies.  As I scrambled to put on my shoes, Maciek was immediately attacked as well.  I spent maybe 12 seconds looking at Lake Nipissing, Maciek less than 2 seconds.  I know I got one bite on my leg and one on my left arm. Maciek figures at least two as well, but intends to provide me with an update in the morning.
 
The bike took a beating on a short section of road construction.  The vibration shook my stem loose as well as put my rear tire out of alignment.  Then, the dust from the recent asphalt grindings got into both the gear changing and brake components, causing everything to seize up.  It was close to 2 hours worth of repairs to get my Specialized ready for morning.  We are staying less than 200 feet from where an all night road repair crew is repairing a broken water main.  They can make as much noise as they like - I don't think I will have any trouble sleeping through.
 
  18
 June   7
 15k east of North Bay
          67 / 1,200
 86.5
 1,174.9
 Comment
There is a reason this is being posted a day late.  We ended up stopped for the night on a short dead end road about 10 km east of Deux-Rivieres, Ontario, where we had no cellphone communication, no OnStar communication, no Blackberry, no Mobile Internet.  After 18 days, I finally found the spot where you can get away from it all.
 
My right knee has been a bugger for well over a week.  I have had bursitis for almost a decade.  However, despite this, it has not slowed me down the least bit.  The left knee on the other hand, or leg as it were, is another story.  I have never had any problems with my left knee - until Monday of this week.  What started as mind discomfort on Monday has turned into a significant pain today.  We ended up having to stop and ice my leg every 15 km in order to push 86k under the peddles. 
 
Hopefully this will be an issue that fades soon.
 
We spoke to several people in Mattawa that had a good understanding about Lyme and shared many stories about the state of our healthcare system.  This blog isn't intended to act as a negative zone for lashing out at healthcare, but really, to hear such frustrated stories of people have gone through really brings home the point that the emperor has no clothes.  I cannot thanks those who listened and shared enough for their personal experiences and candid perspective on what changes need to be made.     
 
  19
 June   8
 15k east of Mattawa
          66 / 1,266
 67.1
 1,242.0
 Comment
Did I mention my left knee?
 
After the first 15k I knew that something was not right on the left, so I backed down to 10k between ice packs and time on the couch.  However, on or about the 47 km mark, I don't believe I actually heard the three popping sounds, but I sure felt them.  After waking from a two-hour sleep, Maciek read me the riot act regarding stopping cycling.  However, being the pig-headed Christie that I am, I put on the bee suit and the shoes and told him we were trying 10k or less.  The good news was that I did about 13k mostly pain free with little or no physical impairment to cycling.  I then finished the day by peddling into the beautiful town of Deep River, Ontario, where we are now.
 
As for tomorrow, the first thing I am doing is heading to the hospital to get some advice on what the heck happened and what I can do about it.
 
What I didn't mention yesterday and also need to mention today is that anyone who hasn't traveled the road called highway 17 east of North Bay, needs to.  This is without a doubt some of the most beautiful country with foothills, watersheds, and nature all around you.  The hills east of North Bay are also without a doubt the steepest and longest that I have had to climb (my left knee as proof), however, despite a day that was hard on me and equally hard on Maciek, I wouldn't miss the scenery for the world, and am quite cognizant that it has been a privilege to have been so lucky to have been able to pain my way up and down every foothill that I met.
 
One other thing I should mention - never in my life have I seen black flies that are so relentless as they are here.  I swear that if they all got together, they could have picked me up,  bike and all, and lifted me over some of those hills.      
 
  20
 June   9
 Deep River
          67 / 1,333
 0
 1,242.0
 Comment
The numbers say it all.  Today was a unintentional holiday.
 
FYI - I went the Deep River and District Healthcare Center and got some very good, and very professional advice. 
 
It seems that my knee injury is a combination of too many long hills between North Bay and Deep River along with increasingly excessive play in my left bike shoe cleat that has been allowing too much movement in my left foot.  What the doctor suspected is that along with my age, and the added pressure that I have put on the knee, the movement in the cleat has strained some cartilage, causing inflammation.  Please note that he was obviously much more technical and detailed than I and my accounting is quite simplified. 
 
After determining that a day off would do a lot of good, Maciek and headed to Renfrew where I will be heading out from in the morning.  Along the way, while stopping for fuel, we ended up meeting and speaking with a couple who have friends with a 30 year old daughter with Lyme that are currently in New York because no proper treatment is available in Canada.  What an incredibly small world that we live in.  If Maciek hadn't jumped out of the truck and started the conversation, we would have never known just how close are lives are and what others have learnt about Lyme disease the hard way.
 
I would also like to thank the doctor, I wish I had taken don his name, but did not think of it at the time.  His diagnosis also included where I could go get new cleats for my shoes, which is a testimony to all that is well and good about our healthcare system.  There are so many kind and caring people within the system, it is just such a shame that they are being prevented from learning the true facts about Lyme from those who control and manipulate the healthcare system from the top down. 
 
And lastly, many thanks from Eric at GearHeads in Petawawa, Ontario.  Not only did we have a great chat about Lyme with Eric, but giving me a super discount on new cleats was an unexpected gesture that is very appreciated. 
 
I may repeat myself, but wow are their a lot of good decent people in this country and it is simply a pleasure having such an incredible opportunity to come into your communities and be made to feel so welcome.
 
Tomorrow, if all in the knee department is well - Ottawa it is!
 
  21
 June 10
 Ottawa
          67 / 1,400
 104.1
 1,346.1
 Comment
I left Renfrew at 7:15 and blasted through 51 km by 9:45 AM.     
 
Now for the best part.....I met three people (2 women and a man) on bikes having a break in the little village of Kinburn, Ontario.  I thought it would be a good idea to stop and pass out flyers.  After introducing what I was doing, the man immediately said, careful - they are both nurses.  Well, knowing that I now had a relevant audience, I went into my usual dialogue about what I have been through and what I believe to be so terribly wrong with the healthcare system.  I included that I really do not blame the individual people, my issue is directed at those that control and manipulate the system from the inside, while having little frontline knowledge of what a lot of people are going through.
 
Now, I am not going to point a finger at all of what I got back but I will say is that there were several comments that to me were not appropriate.  What I will quote is a comment made by one of the nurses.  She asked me what Lyme disease was, then said she has heard of it, but doesn't really understand anything about it. 
 
Hello people of Ontario.................this is what I have been living for over 20 years of my life.  Being told I am crazy, that there must be a history of mental illness in my family, that the pain is all in my head, that I must have a very low tolerance to pain, that I am either a drug addict or a drug pusher, or that I am trying to scam an insurance company for a long-term disability claim.  Yet, as I cycle through Kinburn, Ontario, I have a registered nurse asking me what Lyme disease is...........there must be something wrong with me...............I actually give a shit about the people that continue to suffer from this disease and I continue to demand that our healthcare system wakes up and helps prevent anyone else from having to live the life of hell that I and my family have lived for over 21 years.
 
And finally, ladies - nurses - please buy a book, go online, whatever, at least show me the respect to find out about Lyme, so you may help others that suffer with this debilitating disease.
 
*******************
 
Evening - I didn't realize how emotional Ottawa would mean until I was spinning into the city this afternoon.  5 weeks ago today I met some incredibly high spirited people on Parliament Hill, all closely affected by Lyme.  As I cycled only a few kilometers away from my goal, I stopped and checked my Blackberry.  To my surprise, I was met with an email from Jessica Taliana from The Laser Clinic in Toronto.  Jessica has a 16 year old daughter with Lyme that the Ontario medical denial machine makes travel to the US for treatment.  Jessica also included a donation of $2,000 to Cycle For Lyme.  For this I, 7 hours later, remain speechless (and those who know me know that doesn't happen often).  Thank you so very much!
 
If you have seen the video on the blog, you know my left knee pulled off 96 plus kilometers today to get me to the Hill.  To be able to complete 1,340 plus kilometers in 21 days is no match to what my neighbour's 21-year-old-son Travis can do in his sleep on his bike, but for a 47 year old geezer that has slept for the better part of a decade, I impressed myself today.  And most importantly, I really have to thank all my family, friends, and all others that helped me get this far.  It was a most rewarding day.
 
My conversation with Jessica tonight focused on a lot of things negative about our healthcare system.  I think my resolve is that we, and I mean a lot of we, need to continue to push the message that Lyme is here and its not going away.  The truth is that too many doctors who genuinely would like to treat patients for Lyme, live in fear of being reprimanded for doing what those in authority don't want to acknowledge - that Lyme is real and it is here to stay. 
 
I believe that a lot of us together can change this outcome. 
 
And thank you to all who keep emailing that I do not get a chance to respond to - and the car horns and hands I see everyday - it gives such a boost.  
 
  22
 June 11
 Ottawa - again
          66 / 1,466
 0
 1,346.1
 Comment
Today was just going to be so darn easy - an interview in the morning and the rest of the day in Ottawa with my family.........no biking........just another lazy day at Cycle For Lyme.
 
Maciek and I drove to Gatineau, Quebec, to interview a one of the first people to email me regarding Cycle For Lyme, only days after I finally made the website public.  Within a couple of emails, I quickly realized that Trudy Belonoha and I (and our spouses) had lived very parallel lives. She in the Ottawa Region.  Me in the Toronto Region.  From the most detailed accounting of our strengths to fight Lyme, to the luck that we both share to have ended up with spouses that continued (and continue) to support us through the darkest and most frightening moments of ones life, the more Trudy conveyed, the more I saw of myself.
 
Once a doctor has told you that there is physically nothing wrong with you and that you are effectively crazy, where do you go?
 
At one point during the interview, Trudy conveyed an expression I have only heard come from my own mouth.  She talked about having this thing living inside her body.  Within second I was flooded with memories and emotions that I have been quite capable of suppressing and/or ignoring for many years.  However, I guess my brain will never allow me to forget the cold indignant response of my doctor of 12 years (at the time) when I tried to explain to him that I had this beast traveling around inside of me making me sick all the time, and causing me joint and muscle pain, migraines, constant fever, heart pain, pain in my sides, constant sore throats, constant sinus irritation, itching, pins and needles, eyes that literally ached, constant ringing in my ears, and goodness knows how many other things that don't need mentioning.  My doctors response was to literally start laughing at me and shaking his head, then proceed to explain to me that this was just more proof that I was mentally unstable and depressed.  At one point, he said that what I described was the craziest thing he had ever been told.  In saying this - by definition - my doctor had confirmed to me that I was the craziest patient he had ever had.  That is defining moment that I will always have to cherish.
 
The interview with Trudy was powerful.  To hear her speak of her husband Bruce, was my wife, Heather in every sentence.  Although no one knows more than I what Lyme disease and I have put Heather through, with every word out of Trudy's mouth, all I had to do was substitute the word "Heather" when I heard the word "Bruce" - and Trudy was telling me about my wife's life with a person misdiagnosed and living with (or slowly dying from) Lyme.
 
I understand that as a nurse or a doctor that in order to survive, all healthcare workers need to maintain an emotional distance from their patients or else they will end up in padded rooms themselves (and frankly, I know at least one that should).  I get that.  But when you have a patient that for well over a decade has been telling you, the doctor, about a set of symptoms that were discovered over 30 years earlier and that were discovered less than a 9 hour car ride from where you live, then I am of the opinion that maybe, just maybe, that as a doctor, you should take a few minutes out of your busy day billing OHIP and do a little research to see if maybe, just maybe, what the patient is describing has any medical merit and that the patient may actually not be crazy.
 
Trudy Belonoha is at most 100 pounds with wet clothes, yet is one of the strongest people I have ever met.  She has done what I was never even remotely capable of doing.  She was able to make her family doctor of many years understand that there really is a beast living inside, and not only does her doctor understand, he is doing what my doctor will never be able to do - he cares.  Although I have no doubt that there are many doctors that do care, what I also know is that too many are afraid to speak up for fear of the consequences, given the war on doctors treating patients with Lyme. 
 
Heather and I had one of the best talks that we have been able to have in a long time today here in Ottawa.  Heather has had to do so much to provide the necessities while I have been on the couch asleep for well over a decade.  Heather has had to go to work and maintain a smile on the outside, while she has been crying on the inside.  In November of 2010, I took Heather to see my doctor so that we could try and find closure, as well as make him understand how misdiagnosing has effected our lives. However, within minutes, Heather got to see for herself what I had known for years.  That my doctor is a small person with little or no respect for those that he is entrusted to "care" for and that in the end, my doctor is simply in it for the money.  You see, a couple of days after the indignant visit, my doctors office called to complain that the health card they had on file for Heather was expired and that she had to provide current information.  Apparently, after what we had discussed with my doctor - his priority was to try and double bill for the visit.  That is what almost 2 decades of misdiagnosing my life was worth.  That is what Heather has been through was worth.
 
The day I met my wife, I became the richest man of all.  Immensely personal, yes, but sometimes things need to be said in order to wake up those that are sleeping in the back rows.  And maybe, just maybe, a doctor will actually read this and will learn something about all us crazy people with Lyme disease.
 
  23
 June 12
 Kemptville
          67 / 1,533
 63.2
 1,409.3
 Comment
In consideration of safety issues that were beyond my capability to correct, please be advised that I have had no choice but to suspend Cycle For Lyme for a short period and return to my home in Newmarket, Ontario. 
 
At this point, I intend to resume and complete the balance of the ride starting on June 30, 2011.  Any changes to this date will be posted when available.
 
In the meantime, I would like to take this opportunity to thank all that have supported and followed me on this journey.  
 
The following is some of the media attention received.
 
 
 
 
 
 June 16
 
         
 0
 
 Comment
After just short of 100 hours, I just returned from my first cycle ride since Sunday afternoon.  It was only a 10.9 kilometer ride tonight, but it was full-out and felt fantastic. 
 
What I didn't post on Sunday was that I was as close as one could get from being killed by someone driving an out of control, beige SUV, on a stretch of road north of Kemptville, Ontario.  After what I have to believe was an impaired driver crossed in front of me hitting the shoulder and pelting me with gravel, I avoided collision by crossing the gravel shoulder (doing at least 25 km per hour) and finally getting my Specialized stopped at the bottom of a rather nasty country side-road ditch.  I am still not sure how I did it, but after being hit with stones in the legs, chest, glasses and helmet, I ended up off the bike and on my feet without so much as mark on me.
 
I completely admit that I have been avoiding getting back on the bike.  It wasn't until tonight when I realized that it was only minutes short of 100 hours that I decided that now was as good a time as any.  After living with Lyme for 2 decades, and finally getting a life back that I am capable of doing Cycle For Lyme,  I simply do not want to lose my life at the hand of some incompetent idiot that was likely driving drunk as a skunk on a Sunday afternoon.  We go through life taking to many things for granted - something any person with Lyme or their family members know all to well.  I didn't realize until tonight what sort of denial I have been living for the last few days - telling myself and all those around me that Sunday was no big deal.  After 21 years of suffering, Sunday was a huge deal - and frankly, I am glad that I feel this way.  
 
Tonight confirms what my last post says, this is just a temporary setback, I have already arranged for a new crew that I am positive will take great care of me.   The schedule for completing Cycle For Lyme is currently as posted below and if there are any changes, will be changed accordingly.   
 
  24
 July 1
 Kemptville to Brockville
          60 / 1,593
 69.0
 1,478.3
 Comment
Happy Canada Day!!
 
I would like to say that my first day back on the road was an enthusiastic one, but after two full weeks of Lyme symptoms, yes it is back and doing well inside me, I ended up a rather crabby old man today.  Hours later, I am in pain, but unfortunately not from riding.  What I will say is that it is truly incredible to be able after over twenty years, to precisely distinguish between what is an authentic physical Cycle For Lyme pain against that which comes from Borrelia.  I said this a couple of weeks ago, and I will repeat it again.  If I could just transfer what I feel today for 24 hours to a doctor so he or she could understand what reality we Lyme sufferers live in, it would be a great accomplishment.  This brings me back to what a doctor once told me about what my real problem was - he said that it was clear that I had a low tolerance to pain - in other words - I was a whiney suck.  If I could transfer for an hour what sucky pain inside me now, what a difference it would make to the many who feel what I feel right now.
 
The ride down County Road 44 from Kemptville is a beautiful one.  As much as my brain was coping with, it went quite quickly.  And while highway 2 from Johnstown to Brockville is a treat in a car, it is simply fantastic on a bicycle.  We have a country that we blast across on highways such as the 401, and we miss so very much along the way.  Despite what I have gone through for the past two decades, I have seen much of what this country has to offer, yet undertaking Cycle For Lyme has reinforced what I often forget.....that we simply do not adequately appreciate what we have on our doorstep. 
 
In dealing with having Lyme back for two weeks now, when not sleeping, I made a point to make some calls.  One thing I learnt not only surprised me, but rather made me very upset.  I discovered that the only research being done to determine tick and/or Borrelia infestation in Ontario is being done in the Brockville / Thousand Island area.  As I sit in Brockville writing this blog, I realize how excellent this is for the people living in the Brockville area (like the locals don't already know Lyme is here) - yet how unfortunate it is for the rest of the residence of this province.  How can politicians and/or bureaucrats, the folks that ultimately determine our health make informed decisions about such an epidemic of such significant proportions, when not a dime is being spent to properly study the extent of how Lyme infected ticks have infiltrated Ontario.  I can be quite often be heard privately using the term "let the people die" as a half hearted way of dealing what I have been through, but the reality is that my humour is all too serious, and all too real.
 
I went on the Toronto Star's article archive last week and found an article from 1989 - the year that I was bit and became infected with Borrelia.  The article point blank stated that if we (our government and healthcare providers) didn't wake up and accept that Lyme is here to stay, Lyme had the potential to become an epidemic in the next 10 to 20 years.  Well Hello Ontario - 22 years later those who ignores those words need to be both ashamed and accountable.  How our government can continue to cling to the position that we only just learnt about Lyme a couple of years ago need to listen close - we have proof that you have been in denial for a long time - STOP THE RHETORIC AND DO SOMETHING ABOUT LYME BEFORE MORE OF US BECOME INFECTED. 
 
As I told him briefly what I was doing, I handed a flyer to a man today.  He had a good working knowledge of Lyme.  He response was only two simple words, "Thank you".  Two of the most generous words I could ever hear.
 
Don't blame me - I told you up top that I was a rather crabby old man today.
    
 
  25
 July 2
 Brockville to Gananoque
          50 / 1,643
 51.3
 1,529.6
 Comment
Today was a special day for several reasons.  I tipped the 1,500 kilometer mart.  I had originally figured that as long as I did 1,000 km, Cycle For Lyme would in my mind be a success.  I further figured that 1,500 kilometers would exceed my own expectations.  Given that I am dealing will Lyme daily now, I have well exceeded those expectations and then some.  To land at the foot of Queens Park this time next week, will be something that even a year ago, I never would have believed that I could accomplish.
 
I cycled about 38 km to the home of Betty and Bruce Craig today.  I first met them both in Ottawa in May. Betty has Lyme and is just recently getting treatment.  Bruce and Betty not only welcomed the three of us into their home, they fed us a wonderful meal and gave cycle For Lyme a generous donation that is very much appreciated.  As if that was not enough, they even offered that we can park the truck and trailer in there driveway for the night.  Thank you both so very much!
 
As if dealing with Lyme disease alone isn't enough, it was wonderful to hear all how active Betty and Bruce have been in raising awareness about Lyme in their community.  It continually amazes me that Lyme awareness has ended up being a task that has to be taken on by the victims of this disease, and how community after community is being neglected by local departments of health.  Having traveled from town to town through the Cycle For Lyme route, what people like Betty and Bruce are doing is not only special, it is a vital necessity that for the most part goes without praise. So if you see or know the Craig's, thank them for making your community a safer place to live.
 
I was quite taken back by the response given to the flyers I handed out today.  Virtually every Cycle For Lyme flyer went to someone who was either well informed about Lyme, someone who had an family member that had Lyme, and one man that I missed by a couple of minutes, told Heather and Gavin that he himself had dealt with Lyme.  On the one hand, this was an excellent day for me to hear all this knowledge about Lyme, yet on the other hand it just further goes to show that Lyme disease is not an isolated and/or rare infection to obtain.  The fact is that the area I cycle today from Brockville to Gananogue is only a three hour drive from where Heather, Gavin, and I live in Newmarket, Ontario.  In other words, on any given weekend, we could drive to this area with our RV and unwittingly end up getting bitten by an infected tick - so why is it acceptable that the majority of doctors in the GTA, or anywhere else in Ontario don't even have the basics about Lyme.  The Ministry of Health knows Lyme is here.  Health Canada knows Lyme is here.  The Ministry of Natural Resources has know for 20 years that Lyme is here - so why are the doctors that take care of our health the only ones out of the loop. 
 
My Lyme pain was bad this afternoon, but at the same time I find it inspiring.  Although a little on the whiney side this evening, I would have to say that it is pain that makes Cycle For Lyme even more real and more powerful.  After not knowing what was wrong with me for 19 years, talking to people that suffer with Lyme as I have is so helpful.  Now that I am experiencing the return of Lyme, hearing what Betty Craig is going through, the meeting of the minds as it were, is the icing on the cake.  Hearing what Betty has to say is such an effective way of putting what is important into perspective.  That I have the opportunity to do what I am doing today - simply perfect. 
 
  26
 July 3
 Gananoque to Bath
          50 / 1,693
 56.7
 1,586.3
 Comment
When I originally contracted Lyme in 1989, it took years to develop all the various symptoms that ended up consuming my existence.  That I was misdiagnosed for such an extended period of time, 19 years, I never had the perspective to compare what I was going through to a knowledge base of the disease itself.  The first time around, I did not have the ability to understand why my body was experiencing such horrific pain.  What I went through for close to 2 decades was the lack of the most basic knowledge of what was wrong inside me without ever being able to have anyone explain why my life was being sucked out of me in such a painful manner.
 
19 days ago, my Lyme came back with a vengeance that has really made me realize what I was forced to tolerate for such a ridiculous period of time.  The surging pain that has been passing through various areas of my body since I started to ride again on Friday is simply unbelievable.  To be able to consciously analyze how I have slipped from "living mode" back to the horrible feeling of "survival mode" has been the most debilitating part of the last couple of weeks.  What finally hit me yesterday was the realization that the joy that Cycle For Lyme has been from the start is being drained away by the desire to simply get it over with so I can curl up into a ball and sleep.  I have in such a short span of time gone from wanting to be out here to wanting to go hide.
 
This is the demoralizing beast that Lyme disease is, you go from enjoying all that life is to merely trying to get through the day without any unbearable symptoms.  What fixated itself in my head today was an experience I had with a totally incompetent and completely Lyme illiterate "specialist" doctor.  After less than 20 minutes speaking with me, and without any real knowledge of my medical background, this doctor proceeded to tell me that my problem was that I had IBS, Irritable Bowel Syndrome.  Now I am not trying to make a total mockery of the man, but really, how does a body plagued with muscle and joint pain, constant fewer, relentless migraines, etc, all point to an irritation in my bowels.  This is the comedy that is western medicine - ignore everything the patient says and then give him a pill to mask one of the symptoms. 
 
There is a reason our doctors that can't see the forest for the trees, because they are taught to think that forests do not exist.  Our healthcare system is designed to treat each individual symptom with a pill to make the "symptom" go away, without a second thought about actually figuring out what is wrong with the body for it to be creating the "symptom" in the first place.  This medical experience that I describe is something that occurred to me dozens of times in 19 years.  Time after time, my doctor would pick and focus on one tree while ignoring everything else I said, so that he could put my problems into a little pill.  Until our healthcare system wakes up to the fact that the human body can react in multiple ways to something like a bacterial infection, Lyme disease will never hit a doctor's radar screen. Until our healthcare system takes a step back and acknowledges that a serious flaw exists in its design, we will continue to be grossly over medicated with pills that never cure the illness.
 
In the span of less than 30 minutes while in Kingston, I drastically altered the planned Cycle For Lyme route.  Rather than staying on highway 2 west from Kingston, I switched to the more scenic route called either Ontario King's Highway 33, or simply, the Loyalist Parkway.  This road and the towns and villages that I cycled through are another reminder of all that we miss while getting to our destination at 120 kilometers an hour on the 401.  What I understand as I write this is that this is an area that Heather, Gavin, and I will have to come back to see properly when not rushed and when I am living again, not just surviving as I am today.
 
  27
 July 4
 Bath to Trenton
          60 / 1,753
 67.6
 1,653.9
 Comment
Written July 6th.
 
My body absorbed the first 35 of my 67 kilometers without much difficulty.  However, after a long sleep that didn't improve my well-being, the last 32 kilometers to Trenton were without a doubt the most painful I have had to endure.  As stressful as cycling in constant pain was, I was glad that I could continue.  I worked fulltime for years with this type of pain - yet when I described it to my doctor, he told me we all get aches and pains and that I should just get over it. I figure that he said this to me at least 6 or 7 years before I found out what I was going through was Lyme disease.  What I wonder today is how many thousands have been in the same place as I, leaving with a bacterial infection that the Canadian healthcare system ignores because it is capable of treating.
 
The Prince Edward County ferry ride that joins highway 33, the Loyalist Parkway, is as scenic as it gets.  After getting off the ferry, I ended up speaking to a couple working in their garden.  They were well aware of the Lyme problem in the area and had many times had to remove ticks from their dog.  They said that deer were a problem for them because the previous owner used to put salt blocks out, encouraging the deer into their back yard. 
 
I then cycled about 8 kilometers with a man to Picton.  He was a wealth of information about Lyme.  Although from Toronto, not only did he spent a lot of time in the Picton area, he said that every summer he sailed the 1000 Islands area, where he was well aware that ticks were considered an epidemic.  He told me that, locally, the health department has people in the area that actually go around the 1000 Island area providing information about the consequences of ticks as well as how to remove a tick and what to do if bitten.  What I don't understand is that since the 1000 Islands area is not more than 2 or 3 hours away from the largest city in Canada, why has the same healthcare system not ensured that the traveling public and all doctors have this information as well. 
 
After stopping and sleeping in Wellington, Ontario, I woke up with massive pain throughout my body.  I didn't think I had, but I now realize that my body had forgotten the worst that Lyme disease has to offer.  Not only the pain, but the confusion, the trouble standing without hanging on to something, and the inability to speak fluently.  It was over an hour before I was coherent again.  These are some of the severe issues that I had for well over a decade that I have not had in almost 2 years. 
 
In the afternoon while explaining what I was doing to a woman, she told me about a good friend that her husband had hunted with for decades.  He had contracted Lyme only 3 years earlier and that along with all the physical issues, his memory was almost gone.  She said that in order to help him remember who she was, she would have to help him remember how he had always hunted with her husband.  From my perspective - given that this was only three years ago, this is yet another life needlessly destroyed.  If this man had been properly diagnosed in a timely manner, instead of being pushed through the system as Borrelia invaded his body, he would likely have made a full recovery.  How is it that I only spoke to a couple of people about Lyme, yet I could find a story as terrible as this.  How is it that only a few weeks ago I interviewed a woman who told me that when she went to an infectious disease doctor in the Ottawa area recently, the doctor told her that there was no Lyme disease in Canada, and that it was an American problem.
 
I struggled through and was able to cycle another 32 kilometers to Trenton.
 
  28
 July 5
 Trenton to Colbourg
          52 / 1,805
 54.4
 1,708.3
 Comment
Written July 6th
 
Yesterday was the worst day yet for me.  I don't recall the majority of the cycling, as I literally just went through the motions.  In the end, I cycled 54.4 kilometers and proceeded to sleep on and off the rest of the day.  Heather said it best when she told me last night that I haven't smiled for days and that there is nothing positive coming from me.  Given that from Trenton to Cobourg, I didn't give out a single Cycle For Lyme flyer or speak to anyone about Lyme disease, I can not disagree.  What I will say is that this is what being physically beaten into submission by a relentless bacterial infection does.  It never allows a minute of piece and there is no way to sit, stand, or lay down that will give any sort of relief to the pain.  In many respects, on days like yesterday, it is no wonder that our healthcare system has turned its back on those with Lyme - maybe they actually really do know what we with Lyme go through, but given that there is no treatment for the disease, it is simply easier to turn a blind eye and deny that so many people are going through such a horrible kind of life.  Maybe it helps them sleep better at night to simply keep telling us it is all in our heads.
 
The good news is that since sleeping the majority of the last 14 hours, I am in better shape this Wednesday morning than I have been in days.  Hopefully it will last.
 
  29
 July 6
 Colbourg to Bowmanville
          45 / 1,850
 46.5
 1,754.8
 Comment
The reality is that this was the first day in many where I wasn't in constant pain throughout the entire days ride.  For the most part all I had to deal with was the fatigue.  Although cutting down daily, I still completed 46 kilometers.
 
I had the pleasure of meeting and speaking with a retired veterinarian from Port Hope.  As I have said many times, when I first found out I had Lyme, the way I found out the real scoop about this disease was not by seeing a doctor, but by speaking to veterinarians.  It is a sad statement when doctors know so little about a disease that is effecting the lives of thousands of Canadians, yet all of the four vets that I spoke to could have easily spoken on the subject for hours.  When it comes to Lyme disease, our pets get far better healthcare than we do.
 
Speaking to this veterinarian reminded me of something I had not thought of for a while.  It is not just Lyme that is being misdiagnosed.  Diseases such as Batonella, Babesiosis, Rocky Mountain fever, and Tularemia are also commonly misdiagnosed in humans.  From my perspective, this is yet another problematic dysfunction of our healthcare providers that continues to fall through the cracks.  I look at my own doctor and his lack of foresight to even attempt to look into an area that was out of his comfort zone.  Had my doctor even remotely said to himself that my collection of symptoms maybe the result of an actual illness and not simply a product of my imagination or depression (what I call the doctors easy way out), he would have at least sent me to some form of specialist rather than believe that he was the expert - to which he most certainly was not.  Given the general state of accountability in our healthcare system, our self-regulating and self-monitoring doctors will never open this can of accountability worms.  No doctor is going to sit on a committee and properly punish a fellow doctor unless a ridiculous and outrageous act of negligence has occurred.  All that will ever happen is a slight tap on the wrist.
 
The bottom line is that until we change our healthcare providers attitude to align to that of a basic veterinarian skill set where you don't ignore the signs the dog is telling you, we will never have a healthcare system based on putting what the patient is going through first, rather than stroking the ego of the doctor that gets paid whether the patient receives good treatment or not.  If your vet screws up, he either doesn't get paid or there is recourse.  However, doctors in this country get to feed from the trough whether the patient lives or dies.  What really scares the hell out of me is the entire E-health situation.  Based on what I have been through with the Canadian healthcare system, there is literally not a hope in hell that I will ever go into a doctors office or an emergency room for the rest of my life, and not be hindered by the incompetence of what was written by my family doctor of over 15 years.  His incompetent misdiagnosis of the serious bacterial infection that I had for 19 years will follow me where ever I go.  This is something that E-health will only make worse - misdiagnosed Canadians will never get a second opinion, they will only get what the previous doctor said.  No doctor is going to shoot himself in the foot by going against the opinion of another member of the same club.  E-health is for the protection of doctors - not for the better treatment of patients as the doctors associations are currently spewing through the media.       
 
  30
 July 7
 Bowmanville to Pickering
          32 / 1,882
 35.5
 1,790.3
 Comment
Today was the first day that I road when I wasn't having significant Lyme symptoms.  It was also the first day that I looked around and paying attention again to what passed me by.  I cycled 35.5 km today like I haven't cycled in weeks.  More than ever, today made me more cognizant of just how much people with Lyme disease miss while coping with what this disease dishes out.  The simple things that we always take for granted are pushed aside as the battle with Lyme rages on.
 
The fatigue is still hanging around and I ended up sleeping in the afternoon for more hours than I spent cycled in the morning.  And along with the fatigue came a high fever and nausea.
 
  31
 July 8
 Pickering to Scarborough
          20 / 1,902
 22.3
 1,812.6
 Comment
It was only 22 km to cycle from Pickering to Scarborough today.  At this point, I have cycled approximately 1,812 kilometers and have only about 14 kilometers to go before reaching Queen's Park.  Despite the agony of the last few weeks, I figure it is fitting that the Borrelia would return to invade the 6 plus months of Lyme disease freedom that I have enjoyed. 
 
Today along Kingston Road was rough on the bike and my body, yet I enjoyed ever second of it - something I have not been able to say for many days.  Knowing that I defied all odds and cycled from Queen's Park to Leamington to Sarnia, to Owen Sound, to Sudbury, to North Bay, to Ottawa, to Kingston, and back to Toronto today is something that I can marvel. 
 
What I found along the way is even more of a marvel.  Everywhere I went, I found people that were either directly effected by Lyme disease or who knew someone who was.  Yet, for well over a year now I have been repeatedly told by Ministry of Health and Long Term Care officials that Lyme disease is rare, isolated, and even non-existent in Canada.  That our healthcare system can continue to deny the wealth of knowledge that is out there and all those who suffer with the symptoms is completely irresponsible.
 
How it is that one person can ride a bicycle around a route that is less than 2,000 kilometers in length and find so many people with Lyme, yet in 2008, the Ministry of Health could have the audacity to claim that only 117 people contracted the disease?   
 
How many more Canadians have to be infected with Lyme and misdiagnosed before the outrageous mistakes that are being made today by our healthcare providers get corrected?
 
How many people have to die from Lyme before we care?
 
  32
 July 9
 Scarborough to Queens Park, Toronto
          15 / 1,917
 16.2
 1,828.8
 Comment
The final day!
 
In 32 days on the road, I cycled 30 days.  In those 30 days, I cycled a total of 1,828.8 kilometers for an average of 61 kilometers per day.  Along the way I met a lot of people who knew a lot about Lyme.  Along the way, I spoke in several school to students who unfortunately knew very little about a disease that if misdiagnosed for as few as 4 months, can cause the debilitating, and in Canada, the medically untreatable disease known as Chronic Lyme Disease.
 
The greatest moments of Cycle For Lyme are too numerous to list.  From a simple wave and blow of the horn along the road to an emergency doctor in Deep River who made a huge impact by professionally determining what went wrong inside my left knee, the kindness was and is much appreciated.  To all that provided donations, I thank you for reducing the financial load that undertaking Cycle For Lyme has created.
 
As someone who hasn't been able to work fulltime for over a decade and who was bedridden for weeks at a time only 2 short years ago,  I continue to find myself surprised by how far I have come and what I have accomplished.  In simple words, the thought that I was told that I needed open heart surgery and that I may only have a few months to live because of a faulty heart valve is just icing on the cake of how out of touch the Canadian healthcare system is with respect to Lyme Disease. 
 
Where Cycle For Lyme goes from here is yet to be determined.  All Lyme disease groups from east to west need to start working together, rather than on their own, in order to have a solid, collective voice to make the Canadian healthcare system finally accept that there are thousands of Canadians infected by Borrleia burgdorferi. 
 
What Cycle For Lyme has proven is that in every part of the province of Ontario, there are real people suffering with real symptoms of a disease that few doctors in the province know anything about.  It continues to boggle my mind to think that Canadians have to travel to the United States and pay for treatment to try and combat a disease that has been within a couple of hours of the Canadian border for 35 years.  We are not a third world country, yet with Lyme disease, we may as well be.
 
To all that have supported me, Heather, Gavin, my family, and all others in the many ways to make Cycle For Lyme a success, I thank you.
 
I will stop here......I have to go for a ride on my bicycle......just because I can.
 

To find out more,

          - view the Let's Target Lyme brochure, Click Here.

- from the Chief Medical Officer of Health, Click Here.

- from the Ministry of Health and Long-Term Care, Click Here.

To Learn more about Cycle for Lyme Founder, James Christie's, 21-year battle with Lyme Disease, please visit, www.livingthelymelife.com

   
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