The Region of Durham

On December 1, 2011, the following video was presented to the Region of Durham, Health and Social Services Committee.  The reaction from councillors was incredible.  After my presentation was over, I heard councillor after councillor tell their own stories about Lyme including one councillor describing how a man they knew ended up being diagnosed with Lyme to late, and ended up dying from Lyme disease.  The saddest part is seeing and hearing from so many individuals that have direct experience with this disease, yet collectively remain isolated from understanding that the truth is that there are thousands in the Province of Ontario that are suffering from this terrible disease.  What happened today was so positive – the Region of Durham council is now in the loop about Lyme disease and has publicly promised to thoroughly investigate what it can do to ensure that more is done to educate the public, as well as facilitate change.  That is a great response.  

Gaining Petition Support - The City of Mississauga

I think it is important for the public to recognize the process of gaining support from Municipalities to get endorsements for MPP, Bob Bailey's Lyme disease Petition.

The following link will connect you to the City of Mississauga Council meeting that took place Wednesday, November 9, 2011. The Lyme presentation that Jessica Bell-Taliana and I did begins 1 hour and 22 minutes into the council meeting. You can simply use the slide bar to forward to the 1 hour, 22 minute mark.

Thank you to Mayor Hazel McCallion, and all City of Mississauga Coucillors for listening, for becoming educated about Lyme, and for unanimously endorsing the petition.

The link is,

www.rogerstv.com/page.aspx?lid=237&rid=51&sid=1120&gid=87033

And Thank-you from both Jessica and myself from all those who have already watched the video and sent their appreciation.

James Christie

Eleanor Cox - Chronic Lyme disease Since 1989

Please Sign The Lyme Petition

Getting the Message out is the Best Therapy

Jessica Bell-Taliana and I both provided deputations before the Region of York, Health and Community Services Committee last week.  We put our cards on the table requesting that the Region of York step up to the plate and endorse the Lyme disease Petition started by Corunna, Ontario, Lyme disease sufferer, Christine Heffer. 

The very concept of doing this was a positive and rewarding event.  To hear the Medical Officer of Health for York Region convey that Jessica and I made numerous valid points regarding the substandard testing, lack of public awareness, and lack of training for physicians, really brought home to me what Cycle For Lyme was all about.   That Dr. Kurji, the Medical officer of Health for York Region, a man responsible for the health of over 1,000,000 Ontarians, took the path to convey that various changes are required, was a wonderful thing to hear.  That Dr. Kurji, as a Medical Officer of Health for such a significant population in Ontario, has the ability to facilitate real change, provides hope for everyone currently suffering with this disease.   

What remains the largest hurdle with Lyme is simply the fact that there has been so much negative information circulated about Lyme for so very long.  We struggle in an unfortunate environment where educating anyone with previous knowledge about Lyme disease becomes a challenge where it is not just necessary to provide current information, but rather it is also necessary to dispute information that is now known to be incorrect. 

What is definitely the best therapy is understanding that as more people get the message with respect to the proper facts about Lyme,  the negative voices from the past will be forever silent.    

James Christie

Municipal Endorsements

Getting Municipalities to endorse Christine Heffer's Lyme Disease Petition. 

Region of York - Deputation

On October 12, 2011, both Jessica Bell-Taliana and I did deputations to the Region of York, Health and Community Services Committee, concerning the Lyme disease Petition started by Christine Heffer, that is being carried to Queen's Park later this fall.  The following video is my deputation presentation. I also provided a full written deputation, that is available as a PDF at, www.CycleForLyme.com/deputation.htm.

Where We Are

The Ontario Healthcare System has been abusing Lyme disease patients for a long time. "Where We Are" is proof that our government is not living up to its responsibility.

Interview - Christine Heffer, Corunna, Ontario.

Interview - The Taliana Family - Woodbridge, Ontario.

Cycle For Lyme - Back to Queen's Park

July 9th - Back to Queen's Park

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.

Friday July 8th

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?

Thrusday July 7th

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.

Cycle For Lyme - Week 4 - Back on the Road

This video was filmed entirely by my 13 year-old son, Gavin. Quite an accomplishment! 

July 6th - Doctors v. Veterinarians

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.       

Tuesday, July 5th

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.

Monday, July 4th

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.

Lyme the Second Time Around

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 from 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.

We with Lyme are not alone

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.

Cycle For Lyme lives another day!!!!!

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.

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.

A little bit of.......

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 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.

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

Day 21 - People I've met in Kinburn

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

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.

Britt, Ontario

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.