Lyme Disease — The Controversy

Part 2 of a three-part series.

[Read Part 1]

So why did it take my Mom so long to get the proper diagnosis of Lyme disease? For years she had been experiencing many symptoms and yet not one doctor even considered it to be Lyme. If her primary care physician had been an LLMD (Lyme Literate Medical Doctor), he or she would have recognized the symptoms and ordered tests for Lyme.

But the problem with testing is that about 75% of the testing is faulty. Flip a coin. You probably have a better chance of finding out if you have Lyme or not.

Mom was sent down the path of seeing specialist after specialist when precious treatment time was wasting. Why are physicians not recognizing the symptoms? The state of Massachusetts has the highest risk of Lyme disease, so why is diagnosis and treatment controversial?

Shortly after my Mom passed, I found several of her journals writing of her despair, but mostly skepticism about the different diagnoses from each of her doctors. Not only were her doctors in a battle, her health insurance company refused to cover any of her visits, as well as treatment under her LLMD.

We quickly learned that there are two schools of opinion on Lyme disease. The IDSA, known as the Infectious Disease Society of America, believes that chronic Lyme disease does not exist; people get bit by a tick, get a bull’s eye rash, are prescribed an antibiotic and supposedly, they no longer have Lyme.

Unfortunately that may not be the case. Their belief and treatment guidelines are different from the International Lyme and Associated Disease Society (ILADS). An ILADs physician has been trained to treat an individual clinically based on research of the borrelia burgdorferi bacteria, also known as the Lyme spirochete.

Their form of testing measures the patient’s antibody response to infection. When your body is being invaded by the spirochete, your immune system tries its hardest to make antibodies to fight the infection. During the first 4-6 weeks after exposure, most people have not developed the antibody response that the test measures. If a physician tests them during that window and discovers a negative result, they don’t get treated.

However, treatment with an LLMD would not be delayed while awaiting a positive test result. If the suspicion of Lyme disease is high (exposure, tick bite, possible rash), then early treatment and diagnosis is the key.

The IDSA and ILADs group are like oil and water when it comes to a treatment protocol for Lyme disease. My Mom’s health care was at risk because of this ongoing battle between the two groups and many more are suffering while it’s being argued.

This needs to change. Our state politicians need to support the current bill H901, a bill that would mandate health insurance companies across Massachusetts to cover long term treatment of Lyme disease. We must notify our elected officials that this travesty has to end, as Lyme disease is endemic in our state.

Michele Miller is the co-founder of the Central Mass Lyme Foundation. Call toll free 1-888-511-LYME. 

See also:
Let’s Talk About Lyme Disease
 (Part 1)
How The Central Mass Lyme Foundation Can Help (Part 3)