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.