To the Editor:
Bravo to Emily Bracale for telling it like it is about Lyme disease in her column in last week’s Islander.
I got Lyme disease here in my backyard in Town Hill 20 years ago when it was a rarity. My knees were so infected I could not walk, but I tested negative for Lyme, and my local doctor would not treat me.
I became severely ill, left Maine to move in with my parents, developed countless other symptoms which almost killed me and waited for an appointment with a Lyme doctor. After one to two years of illness and treatment in the care of a great doctor, I recovered. But the disease could not be eradicated.
Ten years later, it reappeared in the form of cognitive impairment, ear problems, and once again, illness and fatigue. After a year and a half of antibiotics and a good doctor, I recovered.
Six years later, Lyme re-emerged in the form of spinal and arthritic problems which turned into neurologic problems mimicking MS or ALS. It caused an illness so severe I was unable to live on my own. After another year of antibiotics and a lot of misery, I am once again on the mend.
The state of Lyme disease care in this area is deplorable. I have to see Lyme literate doctors in New York State. My local physician refused to cooperate with my treatment, prolonging my illness.
I know a lot about Lyme disease and its treatment, and it breaks my heart that I cannot help others because there is no knowledgeable local doctor to send them to.
In 2007, the International Lyme and Associated Disease Society (ILADS) held it annual training conference in Boston. I personally delivered this information to every doctor’s office on the island, begging them to go. I told them no person who is cognitively impaired, physically handicapped and severely ill should have to travel 500 miles for medical care, usually after spending months on a waiting list.
No local medical professional went to that conference.
If money is the problem that keeps our medical professionals from attending educational conferences, then I too would be willing to contribute to a scholarship fund. We are desperate for a Lyme-literate doctor.