Guest Spot: Just one bite … my Lyme disease story

05/08/2017 6:00 AM |

May is Lyme Disease Awareness Month.

I am an attorney and share my time between the North Fork of Long Island and Connecticut, and, like many others, have lived my life aware of Lyme disease and tick bites, but thinking that taking three weeks of antibiotics will cure the disease.

As the weather warms and the tick season is upon us, I wanted to share that “just one bite,” never found and most likely occurring in the spring of 2009, completely changed my life.

I have always been a healthy person. But during the spring of 2009 I just kept getting more and more sick with very high fevers, drenching sweats and pain and body weakness. After several trips to the doctor, where strep throat and swine flu were ruled out and an initial Lyme disease test was negative, I returned to see my nurse practitioner. Even back in 2009 she had seen several cases of babesiosis and anaplasmosis (ehrlichiosis is another closely related disease), other tick-borne illnesses. Out of an abundance of caution, she tested me for babesiosis and anaplasmosis, as well as for Lyme. She called me with great surprise to tell me that I had this “tick trifecta” as well as pneumonia, most likely caused by the same tick bite.

When my nurse practitioner called, I was at work, having been struggling with even walking a block without feeling weakness and shortness of breath. I had never heard of babesiosis or anaplasmosis. When I looked them up on the CDC website at that time, they were considered “rare” diseases and I was surprised to learn that babesia, the parasite that causes the disease babesiosis, could cause death. Now they are not considered so rare since they are prevalent in this region.

I went through the ordinary treatment for these diseases, namely three weeks of antibiotics for the first two diseases and a second antibiotic with quinine for babesiosis (similar to treatment for malaria). I spent most of the summer in pain and unable to leave the sofa. I had brain fog, dizziness, muscle weakness, pain and many other symptoms.

And I was confident that I had beat the disease in autumn when I felt better. Yet, I was so wrong. I have been on disability for this chronic illness for several years and have never been able to return to work full time. My entire life has changed and every day needs to be managed. I used to travel to Europe a few times a year and now can’t even get to Chicago to visit my grandchildren. Yet, I tell the doctors I consider myself lucky… they laugh. But this is why I consider myself lucky:

• I have medical coverage for most of my treatments and tests.

• I have the support of friends and family.

• I have a job that has been flexible in accommodating my illness.

• I do not have Lyme arthritis so severe as to disfigure me; I do not have a Lyme heart condition.

• I can still walk.

• I have a husband who has taken the time to educate himself on this illness so he understands when I can’t do things.

• I have good doctors who believed in me.

• I am not deaf.

• I can still find joy in every day.

• I live in a nice home with great light so when I am inside I don’t mind it so much.

• I am not a child who will live with this her whole life.

• I am still alive. (There is no place where tick-borne disease deaths are reported. Yet in six months I have heard of about 10, many more than West Nile or Zika.)

Nevertheless, just one bite changed my life. Take all precautions to avoid being bitten and get treatment when you do. Careful inspection and using tick repellents are the first line of defense. And support lymedisease.org to get more research for accurate testing and treatment. And take the Lyme Disease Challenge at lymediseasechallenge.org and take a bite out of Lyme!

Maureen Massa is a part-time Southold resident.

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