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.