Wednesday, June 22, 2011

Cycle For Lyme Hits 1000 km

On June 6, 2011, Cycle For Lyme hit the 1000 km mark. To some it may not seem like a big deal, but for a 47 year-old geezer that suffered from 21 years of Chronic Lyme Disease, it is more than a milestone........its a life changing achievement that the Canadian healthcare system needs to wake up and pay attention too....and no other family members have any conceit....I have it all.

Monday, June 13, 2011

Day 23 - A Temporary Setback

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.  

Day 22 - Just Another Lazy Day in Ottawa

Today was just going to be so darn easy - an interview in the morning and the rest of the day in Ottawa with my 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.

Friday, June 10, 2011

Cycle for Lyme - Ottawa, June 12th, Parliament Hill 11:00 AM

Day 21 - People I've met in Kinburn

I left Renfrew at and blasted through 51 km by .     
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

Day 20

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!

Day 19

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.      

Day 18

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.

Monday, June 6, 2011

Day 17 - 1000km!

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 flourescent 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.


Day 16

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.

Day 15

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

Sunday, June 5, 2011

Day 14

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 peole 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, , 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. 

Thursday, June 2, 2011

Day 13

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. 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.


Wednesday, June 1, 2011

Day 12

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 son.  It doesn't get any better than that.


Gavin and I bicycled from Meaford to Craigleigh Provincial Park on the bike trail that runs on the old railway line, a total of approximately 25 km.  We got to talk the entire way and I had the opportunity to here 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 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.