Thank you for your Nov. 13 article on the decline in reported cases of Lyme disease. Any attention to this debilitating disease is helpful to all who suffer from its symptoms.
However, the one word that needs to be stressed is “reported.” Any Lyme-literate doctor or person knows full well that the actual number of Lyme cases in Maine is hundreds of times larger than those that are “reported.” In Maine, the tests for the disease are woefully inaccurate and do not indicate the true expanse of the effects on Mainers.
I have had Lyme disease for over 15 years, and it is never “cured” – it only goes into remission and may come back at any time. The experiences I have had personally are so commonplace that it is frightening to all who have the disease. There is no cure, there is no accurate test for its presence, and it is totally debilitating to those who suffer from its effects.
For you to say that the number of cases has decreased is a slap in the face to all who suffer from this. The actual truth is far beyond the information available through the state.
A few years ago, I was involved with getting legislation passed to provide options to those who suffer. The head of the Maine Center for Disease Control came to the Health and Human Services Committee and said, “There is no such thing as long-term Lyme disease.” That has been the opinion of too many physicians and the state itself for far too long.
I know many people who suffer in silence from this disease because it is not recognized for what it is. There are so few doctors in the state who recognize the effects of Lyme. I have seen people crippled, unable to work, suffering from the inability to function as a human being, causing family issues, losing their jobs because of the fog associated with Lyme and generally being looked at as losers because of their inability to live their lives, myself included in this group.
I hope at some time, this debilitating disease will be recognized for how horribly it affects so many people across the state.
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