Seated on the Lyme bike, are CT
Lyme Riders, Inc. founders Sandy and Tony
The idea behind
the Lyme ride is to bring awareness to Lyme disease. After seeing
first hand how debilitating it is and how many people are affected, we
had to do something.
years of being sick and hearing everything from there is nothing wrong,
to it's all in your head, maybe you have Multiple Sclerosis, and many other
mis-diagnosis, it was finally found to be Lyme disease. Once we realized
what it was, we started doing research on this horrible disease and realized
that we are not alone. The tests used for the disease are only about
60% accurate so Lyme disease becomes a clinical diagnosis. We have
run into many people who have the disease and they went through many years
of the same tests, wrong diagnosis, and suffering that we have been through.
We realized that more awareness was needed about this disease and came
up with the idea of a motorcycle poker run.
is not a simple illness. One of the saddest parts is thousands of
people go on for years being sick and never know why. It can take
years before the proper diagnosis is made, and by then the disease has
set in. Lyme disease is a silent but very real and debilitating disease,
and when not caught early enough leads to a serious chronic illness.
Almost half of all people bitten will never develop the "bulls eye rash"
and never even know they have been bitten. Several months to years
later they will feel ongoing sickness but not know why. Slowly the
bacteria of the Lyme spread and cause headaches, joint aches, unexplained
hair loss, difficulty thinking (brain fog), depression, difficulty with
speech, difficulty concentrating or following directions, and inability
to do what once was a simple task, unexplained sweating, disturbed sleep,
fatigue, poor stamina, poor balance, tremors, twitching of facial and other
muscles, irritability, unexplained weight loss or gain, and the list goes
on and on. Lyme can also cause psychological issues and in fact many
people who are hospitalized are later found to have Lyme disease.
is known as the great imitator and is commonly misdiagnosed as Fibromyalgia,
Chronic Fatigue Syndrome (CFS), or even Multiple Sclerosis (MS).
The sickest people have gone on for years being misdiagnosed or being told
it is all in their head only to find out it is really Lyme disease later
on. They get sicker and sicker and start to believe there is no help
because no doctor can seem to help. They may end up with late stage
Lyme disease or even central nervous system Lyme disease where the memory
is affected. Some patients get so bad they seem to have no short-term
memory at all. Headaches are so bad it feels like their head is going
to explode, the joint pain is so bad they can hardly walk, and everyday
life becomes a challenge. Yet doctor after doctor miss all the symptoms,
and misdiagnosis the sickness because they are not aware of Lyme disease
or how it really works and can affect people. The doctor may order
a Lyme blood test but the tests are so undependable they will come back
with a false negative more than half the time. The person who is
sick finally gets pushed from another person who has Lyme disease to get
tested time and time again until a Lyme specialist is consulted and this
doctor will treat the symptoms, not the blood work. Once properly
treated it may take months if not years for the medicines to work and heal
the patient. There are several different strands of Lyme disease
and many patients are co-infected, which makes the treatment even more
Lyme is not
recognized for how bad of a disease it is. Often a person is found
to have the "bulls eye rash", treated quickly with antibiotics and is considered
cured, therefore Lyme is treated as a nothing illness. This is wrong!
Lyme is not an illness but a disease that thousands suffer from and unless
it is brought out to the publicís attention and awareness there is little
that will be done to help.