New York Times Response
Dear NY Times Editorial Leadership,
My name is Olivia Goodreau and I am 14 years old. I am writing in response to the article on June 27, 2019 by Apoorva Mandavilli. I am very glad that her son “is totally fine”, but she should not brag or throw it in the face to those of us who are not “totally fine” from a tick bite.
I also don’t understand how someone who had the good fortune to catch the disease early and has dealt with Lyme for only 4 weeks, now has a platform to give very misleading information to the world.
I was bit the summer before my 2nd grade year on vacation. We never saw the tick and I did not have a rash. It took 51 doctors and 18 months for me to be properly diagnosed with Lyme disease. And then another 3 yrs to be diagnosed with four co-infections (ticks can carry over 40 diseases). I could barely walk, had a tremor in my hand, my neck muscles could not hold up my head and I was passing out. I am not “totally fine”. I miss on average 50 days of school a year. I had to give up all my sports. I lost friends. I am bullied at school and my childhood has been lost to Lyme.
But I am one of the “lucky ones” because I still go to school. 200 kids a day are diagnosed with Lyme. That is four school buses of kids a day.
In 2016 I read a story about a single mom and her son who gave up their apartment to live in their car to be able to afford her son’s Lyme disease medication. That story broke my heart and I knew I had to do something.
In Jan 2017 I started the LivLyme Foundation to raise money for kids who cannot afford their Lyme medication and doctors visits, in addition to supporting scientific research to find a cure for everyone who suffers for Lyme disease.
I have raised over $1 million dollars. I have given 31 grants to kids with Lyme. I have given four grants to Stanford University, Johns Hopkins Bloomberg School of Public Health, and University of New Haven.
I also invented the free global app TickTracker, that lets you see what ticks are around you in real time using geo location. My app was selected this spring by the U.S. Department of Health & Human Services as a TOP (The Opportunity Project) app that impacts health issues…ticks & tick-borne diseases.
My goal is to make sure that no one goes through what I have experienced with Lyme & co-infections for over half of my life.
What I would ask of The NY Times is that your show the reality of Lyme patients, their care takers, Lyme literate doctors, and Lyme scientists working to help this horrible disease.
By putting out this article by Apoorva Mandavilli staying that her son is “totally fine” you hurt all the hard work that Lyme advocates & scientists are doing around the world.
This past spring I was not accepted into the high school I wanted to go to because “my activism (for Lyme) would get in the way of being a good member of their community”. I battle Lyme, bullies and had an A- average. All Lyme patients want is a “community” because we feel so isolated being sick. All I want to do is be “totally fine”. Lyme is a disease that you would not wish upon anyone. It brings the strongest person to their knees.
So PLEASE remember that ticks do not discriminate. They do not care about your financial status, the color of your skin, where you are from, or what high school you went to.
I just want to be a teenager who is “totally fine”. But I know I need to help kids who cannot afford their Lyme medications and to help scientist find a cure. So I ask that you share stories in the NY Times of the other side of Lyme, stories of people who struggle everyday and are NOT “totally fine” from Lyme disease.
Thank you for your time & always check for ticks.
Crows common city dwellers, can be hosts to pathogen carrying ticks. In one recent study, 33% of crows sampled carried ticks positive for Anaplasma & two strains of Rickettsia (co diseases of Lyme).