CT Lyme Riders, Inc.
CT Lyme Riders History

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. 

After several 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. 

Lyme disease 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 and several different doctors before the proper diagnosis is made, and by then the disease has set in.  The average person will see 5 different doctors for nearly 2 years before a proper diagnosis, and nearly 40% of Lyme patients end up with long term health problems.  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 with "psychological issues" are later found to have Lyme disease.

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.  One of the biggest problems, is most doctors treat off the blood work (which is wrong almost half the time), whereas a positive blood test IS NOT needed for a person to be diagnosed and treated for Lyme disease.  The criteria for diagnosing Lyme disease is symptoms, physical findings, and exposure risk.  Blood testing is only done to confirm what is already suspected, but the testing is so inaccurate it is not a requirement for treatment, and medication should be started right away, not waiting on blood work.  Blood work should also be sent to a specialty lab for Lyme disease.  Because of all the co-infections that are with Lyme disease (Babesia, Bartonella, Mycoplasma, Q-Fever, Ehrichiosis, Powassan and many more), the blood needs to be properly tested for these as well for the most accurate results.

Once properly treated it may take months if not years for the medicines to work and heal the patient.  There are several different strains of Lyme disease and many patients are co-infected, which makes the treatment even more difficult. It is estimated roughly 330,000 new cases of Lyme disease happen a year (that's 6,346 new cases a week, which equals 906 new cases a day)!

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. 


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 Dedicated to Raising Awareness and the Education of Lyme Disease