The Misdiagnosis of Lyme Disease

There is a very cynical side of Lyme Disease that is downplayed by both frontline healthcare providers, as well as all managerial levels of the healthcare system in Canada.  The truth is that the misdiagnosis of Lyme Disease is physically, emotionally, and financially devastating on the people infected, as well as the families living with an infected person.

Without any hesitation, the effects of this disease are very personal to me.  To put it monetarily, this disease has cost my wife and I at least $850,000 date.  My retirement savings that would be worth well over $250,000 are all gone.  The income I have lost since 1997, when I was no longer capable of working full time, easily add up to $600,000 to $750,000.  From my perspective, this free healthcare system that we hold is such high regard is useless if it ignores people with diseases that it does not understand and/or refuses to recognize.  The fact that a disease is not understood, does not mean that doctors and nurses have the right to either ignore or disregard people that are clearly sick.   

How could my position not be personal.  For just short of 19 years, I lived a life of hell where I simply could not find a single qualified doctor that would begin to help me uncover the source of what my body was going through.  What I was told was that I was faking an illness to commit health insurance fraud, faking it to get prescription drugs, that I had a low tolerance to pain, or just simply that I was faking it because I was mentally ill.  Not one doctor took the time to listen, not one doctor spent more than the minimum to get me out the door and onto the next patient. 

The truth is that what the Canadian healthcare system does not want the public to be aware that there is no proper treatment protocol or "guideline" for the treatment and/or cure for Chronic Lyme Disease.  Given that Lyme was discovered over 35 years ago and that millions of Canadians live less than a three or four hour drive from areas that are considered Lyme Disease "hot spots" where infected ticks are known to live, it is disturbing that more has not been done.  At anytime, unsuspecting Canadians are at risk of contract and infection from by Borrelia burgdorferi.

The brutal reality is that people who could otherwise be easily cured, end up constantly sick for years, even decades as was the case for myself.  In my case, the Lyme Disease infection that ran unfettered throughout my body for 19 years has done collateral damage to my body that may never recover.  Had just one of the doctors that treated me from 1990 until 2006 had a single clue with about Lyme, my situation today maybe totally different.  Had I not walked out of my doctors office in July of 2006 and empowered myself to find out what was really going on inside me, I would likely not be alive today.  That I was not so ultimately lucky to have met Steve O'Neill, a Practitioner of Traditional Chinese Medicine, in July of 2007, there is no doubt that I wouldn't be alive today.

One of the most upsetting, yet at the same time, comforting things to have discovered since 2008, is the number of people who have lead such a parallel life to mine.  Since 2008, I have spoken with and listened to the stories of dozens of people directly affected by Lyme.  The outcome has almost always been the same.  In almost every case, everyone has the same story - their doctor simply didn't have a clue it was Lyme and the majority were being medically treated as if they were mentally ill.  It is a sad situation that I take comfort in knowing that I have not been alone.

Although Chronic Lyme Disease was recently accepted (July, 2010) by the Canadian healthcare system as a valid disease, the reality is that the issue remains that the majority of Canadian doctors and physicians remain uneducated with regard to the complexities of the disease.  All to often, doctors continue to maintain the party line that has been given out for the past three decades - that Chronic Lyme Disease does not exist and that (Acute) Lyme Disease is rare in Canada. 

In my case, even after going to the United States and paying for medical testing to prove that 19 years of illness were the direct result of a Borrelia burgdorferi infection, I have repeatedly been told I never had Lyme Disease by doctors that have little to no training with respect to the disease.  How any doctor, with no basic knowledge or formal training related to the complexities of Lyme Disease, could within a couple of minutes of visually looking at me, turn around and tell me that 2 decades of illness never took place is not only unprofessional, I am of the opinion that it is incompetent.        

The following is a list of what I was told I had over the years by various doctors and emergency room staff.

1. Chronic Fatigue Syndrome - a disease for which no cause, treatment, or cure is known. 

2. Fibromyalgia - a disease for which no cause, treatment, or cure is known.

3. Depression - not a disease, depression is a shift in mood - more like a symptom that is the result of a real illness or disease.  It makes no sense to medically treat people for depression without taking the time to rule out if there is a physical cause for the depression.  

4. Multiple Sclerosis - an inflammatory disease that effects the brain and spinal cord for which there is no known cure.

5. Lupus - a collection of diseases that all share similar underlying immunity deficiencies.  

6. Autoimmune Disease - an over-activity and confused immune system that turns on the body, attacking cells, tissue, and organs as if they were a foreign pathogen.    

7. Cardiac Valve Disease - a disease where the heart valve does not close properly and allows blood to pass through it in the wrong direction.

8. Mentally Unstable - In my case, I was told that all of the muscle pain, adrenal pain, migraines, constant sore throats, constant sinus discharge, vision problems, and fatigue were all in his imagination and that ultimately there must be a history of mental health problems in my family.

9. Insurance Scammer - I was told that I was attempting to scam my employer's health insurance plan in order to make a fraudulent long term disability claim.  The fact is, I am self-employed and have no type or sort of disability insurance and therefore no ability to file such a claim.

10. Narcotic Addict - I was told that he was going from hospital to hospital not to seek medical help, but in order to obtain prescriptions for narcotics because I was either a prescription drug addict or I was selling prescription narcotics to drug addicts.  The fact is, on two separate occasions, against my doctors orders, I took myself of prescription narcotics because not only did they not help relieve the pain, they made my condition worse.

11. Healthcare Scammer - That I was being refused admittance to the emergency facilities because I had already been to another hospital the same day.

The most disturbing reality here is that when an obviously sick person arrives at a doctors office and/or hospital emergency room with a disease that does not fit into one of the Canadian healthcare systems status quo guidelines, time and time again, there is no type of protocol in place to deal with the patient.  In my case, the standard operating procedure was to deny me any form of help, refuse to stop and listen to what I had to say, and chase me out of the building using personal unqualified attacks on my person.  Not once did a doctor or nurse, ever take the time to listen to what I had to say and offer any help toward finding out what I was going through. 

The best the Canadian healthcare system has to say to the public today is simple and very sad - don't get bit by a tick.  After 35 years, this simply is not good enough.