Mom on a Misson // Being An Advocate for Lyme Disease Awareness
/We are honored to have Nicki Nysven with us to share her very personal story of how she became her children's best advocate.
I am a mom on a mission to spread the word. Through our journey, I have found what I was meant to do: educate others, inspire and never give up. Lyme Disease Awareness has become crucial to me as my husband and I are the parents of two children who both have tick-borne illnesses.
My 12-year-old daughter was diagnosed Center for Disease Control (CDC)-positive for Lyme Disease in April 2014. My 18-year-old son was diagnosed with Babesia, a co-infection of Lyme Disease, in April 2015. Both of these illnesses are caused by a tick bite.
As a result, I have become an advocate for my children and for others who suffer from these diseases.
It all started when my daughter, who was 4-1/2 at the time, told me that her back was hurting. As time went on, she started to complain that her neck hurt and she felt tingly feelings on her arms and legs--like lady bugs were crawling on her. She had trouble bending over and could only reach as far as her knees.
Symptoms continued and when she was in fourth grade, her knees hurt so much that she was no longer able to participate in sports. She loved playing soccer, but she was unable to play the last gave of a tournament because of her pain. It was devastating for her. The pain became so unbearable that she was unable to participate in school recess.
I promised her that I would never give up trying to find out was was causing her so much pain. There had to be a reason. I wasn't going to stop until we had an answer. I knew I needed to listen to my "mother's intuition" because it kept telling me that something wasn't right.
For over 5 years, we had scores of doctor's appointments, volumes of blood work, MRI's, CAT scans and specialist after specialist, including a team of physicians at a children's hospital in a major California university. We were told that they couldn't find anything wrong with her other than a vague diagnosis of Reactive Arthritis. They said she would have to learn pain management and live with the pain for the rest of her life.
Then I took her to a naturopathic doctor who ran more extensive lab tests. When they came back, they showed CDC-positive for Lyme Disease.
We finally had our answer.
Looking back, I now believe my son contracted Babesia around the same time that my daughter contracted Lyme. With all that I have learned about the disease this past couple of years, I realize that he had symptoms all along but was still able to function in ways that masked them. The symptoms were subtle enough at first that things seemed normal to him. His insomnia, stomach pain, migraines and random extremity pain were like everyday life to him.
At the beginning of this past year, things got worse which led him to miss more and more school. He was having frequent migraines, extreme insomnia, air hunger (respiratory distress), rib pain, light-headedness and severe stomach pain which are all symptoms of Babesia. He ended up on home instruction the last few months of his junior year of high school.
My son had been an avid, dedicated and disciplined soccer player since elementary school and played the club scene along with playing varsity soccer since his freshman year. Because of his health, he was not able to play soccer his senior year and it would appear that he won't play in college either. He was good enough that there was a realistic hope that he could have been awarded a college scholarship. In addition, missing so much school due to health issues led us to switching him to an independent charter school.
I didn’t want to wait 5 more years to get a definite diagnosis, so I took him to the ND to rule out Lyme and co-infections, even though I was sure he had it. Sure enough, his tests came out positive for Babesia.
Overall, I did a massive amount of research, not only to educate myself but also family and friends. I wanted them to understand the severity of these diseases.
During my Lyme searches, I came across a group on Facebook called the Lyme Disease Challenge. The group is made up of five women who all have Lyme and are from all over the U.S. They put together a grassroots campaign similar to the ALS Ice Bucket Challenge. It kicked off May 1st of last year because May is Lyme Awareness month.
I thought using their idea was a perfect opportunity to spread awareness here on the Central Coast. I was able to get tons of family and friends to participate in the Challenge, and many public figures such as actors, famous athletes, musicians, news anchors, and reality cast members have also taken the Challenge.
One of my brothers posted a video of himself with the cast of Orange County Housewives taking the Challenge in honor of my daughter. That led to many Bravo TV cast members that I helped encourage to take the Challenge; Beverly Hills Housewives who took the Challenge in honor of Yolanda Foster who has Lyme, New York Housewives, Australia’s Housewives of Melbourne, Housewife of Miami cast member Lea Black, Southern Charm, the cast of Secrets and Wives, Million Dollar Listings of SF, and Shahs of Sunset.
I hike the hills along with many people here on the Central Coast who do not know that tick-borne-Lyme, and co-infections such as Babesia, exist right here, and many do not how to prevent it. Too many people believe, wrongly so, that it is only contacted on the East Coast. I believe it is likely that 99% of our local population does not know the facts. Additionally, most of our medical doctors on the Central Coast do not appear to know that Lyme does exist here.
KSBY, our local news station, interviewed my daughter and me about my daughter’s story and the Challenge, and I had people who I don’t know reach out to me through FB personal message and Twitter thanking me for speaking about Lyme because they had felt alone with their illnesses.
Although the first-generation Challenge has been raising much-needed awareness, I feel in my heart that more needs to be done for my children's future and that of all the others suffering from these horrible diseases.
My friend, Andrea Marciano, who has Lyme Disease, feels the same. She started a foundation called Lyme Lilli of which I am the co-founder. The foundation will be putting on charity events to help raise money for Lyme and Co-infection patient care along with campaigns to help spread awareness.
Also, we reached out to our local high school and worked with administration, and set May 11th--because May is Lyme awareness month--to help educate the students about where Lyme and Co-infections come from and how to prevent contracting the diseases while continuing to enjoy being active out in nature.
One of our team members, who I can now definitely also call a friend, Bob Sabatino from Staten Island NY, has recently been reaching out to senators and congressmen on both sides of the aisle, and physicians, sharing the story of his life-threatening struggles with Lyme Disease and complications of it in order to help promote awareness and focus attention on a proposed Senate Bill, #1503. The bill is described in a link found in the resources listed below.
I especially want to thank my husband for being so supportive through all this. If it weren’t for him, I wouldn’t have been able to help our children with good medical care and to help others through spreading awareness.
Please, all of you who read this article, help me to continue to spread awareness.
Here are some great resources that provide helpful and vital information for learning about the diseases and how to prevent them:
