TOUCHED BY LYME: Lyme disease awareness through figure skating
A Minnesota ice skater’s artistic video teaches people about Lyme and promotes petition to remove the IDSA guidelines
Thirty-year-old Amber Van Wyk was 10 when she laced up her first pair of ice skates and it was “love at first glide.” She became immersed in the world of figure skating—untold hours of practice, learning the art of choreography, years of competition. Later, she skated professionally, first at Knott’s Berry Farm, and then traveling the world with Disney on Ice. Eventually, she gave up touring and became a choreographer working with young skaters in Minnesota. Figure skating continued to be her passion, her artistic canvas, the sanctuary where she felt most at home spiritually.
Then, in the fall of 2009, something happened.
About a week after she and some young skaters took pictures near some long grass in Lakeville, MN, she developed an extremely high fever and was out of commission for a few days. (“I had no rash, no indication of a tick bite. I never even gave it a thought.”) When she returned to the ice, her balance and coordination were off and she felt dizzy when she skated. She soon developed numbness on her left side.
“I believe skating saved me from waiting too long before really investigating,” she recalls. She spent a year visiting doctors, including top specialists, but none could figure out what was wrong. Once she dove into her own research and found Burrascano’s extensive list of Lyme symptoms, she knew in her gut she’d discovered something important.
Then, she went into overdrive to get tested appropriately (receiving a “very positive” Lyme western blot from Igenex Labs) and found a doctor willing to help her. In treatment since December 2010, Amber says she has shown major improvement since then but still has a long road ahead.
Although far from her former skating self, she can get out on the ice and train. “I have to make room for bad days and allow myself those,” she says. “I still can’t spin, but I can skate and jump.” Even with restrictions, the act of ice skating remains her pride and joy.
Amber is “heart-broken and angry” about how the political controversy surrounding Lyme disease makes it so hard for people with Lyme to get properly diagnosed and treated. She supports LymeDisease.org’s petition to get the IDSA’s Lyme guidelines removed from the National Guidelines Clearinghouse. (Click here to read more about that.)
To help spread awareness, she has created a music video (set to the haunting song “Storm,” by the band Lifehouse) which contrasts her “skating self” with her “Lyme self.” It starts out with a stark, handwritten message: “This is my reality…my storm…this is Lyme.” It packs a powerful punch, intercutting footage of her lovely ice-skating with dramatic shots of IV antibiotics and other Lyme-related paraphernalia. It ends with a plea to sign the petition.
She made the video to help create awareness about how devastating Lyme disease can be. “The only way I know how to do that is through my art.”
Watch Amber’s video:
Click here to sign the petition.
TOUCHED BY LYME is written by Dorothy Kupcha Leland, LymeDisease.org’s VP for Education and Outreach. Contact her at email@example.com.
- February 15, 2012 at 4:25 am
amber, beautfiul, effective video; thanks for doing this in a most effective, educational way.
dorothy, thanks for the story. i voted earlier; i’m guessing ONE vote only right my friend?
- February 15, 2012 at 12:18 pm
Thanks so much Betty… I appreciate it. Just wanted to have a voice and express myself. The petition is up a lot! Wahoo…. keep on spreading the word.
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- February 16, 2012 at 12:44 pm
I cried through the whole video. This was me 3 years ago. Almost died 2 years ago. Such an inspiration! Love it, Mandy
- February 17, 2012 at 7:57 am
Thank you. My home is a mini pharmacy. I wake up thankful for all the things I can still do but some days are not pretty. I worry about those who don’t have access to all the care and products that I am able to obtain. You are reaching many. Thank you.
- February 17, 2012 at 7:58 am
Really well done, Amber!
Please contact me privately so I can give you a complimentary copy of the book Drs. Burrascano and Fletcher and I wrote.
- February 17, 2012 at 4:40 pm
Beautiful, Amber, we need such a brave and optimistic people in the Lyme community,
THIS KEEPS US GOING,
- February 17, 2012 at 10:45 am
Just beautiful.Thank you for bringing awareness about this awful disease.I have 10 days left to go on my IV Rocephin treatment.I still have fight left in me too! I will NOT let lyme disease and it’s co-infections or the political crap stop me.I have signed the petition two weeks ago.
Wishing you and every lyme patient all the best.
- February 17, 2012 at 11:21 am
Thank you so much for your elegant and poignant story and video. Lyme disease already takes so much from us. It is so very wrong that the IDSA guidelines intentionally take more. We are the forgotten epidemic. Everyone – sign that petition, and pass it on to everyone you know! We must learn to make a BIG noise, or we will continue to be left in the shadows.
Brava, Dorothy and Amber. You sharing is a gift to us all.
- February 17, 2012 at 2:54 pm
Thank you for your video. I sit here crying as I watch it. Today is my daughter’s 18th birthday. Sometimes I think she is not going to make it. You give me a little bit of strength today, thanks.
- February 17, 2012 at 5:26 pm
Very nice and will share with my beautiful 19 year old daughter as she and I battle this together. Thanks for doing this.
- February 17, 2012 at 7:32 pm
Thank you, Amber, for going to the effort to create such a poignant and truthful production. I just posted the video on my FB page. I’ve never been able to get the I.V. antibiotics, (and it’s hard to imagine the regimen that requires), but I relate so much to all the pill taking every day! It’s been six years for me now, struggling both physically and financially. Your video helps all of us show others what it’s like, so you’ve done us all a service. Here’s wishes and prayers for your continued healing and grace-filled ice dancing!
- February 18, 2012 at 9:52 am
A beautiful video . I am in my third month of treatment. I had to travel 0ver four hundred miles to get a Doctor who would acknowledge that there was need for treatment far past what the ISDA guidelines state. So far I’m doing pills only.At end of 4 months, I guess he will decide whether I need the IV treatment. I got diagnosed within a month of onset of symtoms. I was bitten by something in Pickwick Lake, which makes me question if the only source of infection is ticks.
- February 18, 2012 at 12:09 pm
Amber, thank you for this beautiful video to increase awareness about lyme. After many years of misdiagnoses and mistreatments for numerous ailments, my husband and I were both diagnosed 5 years ago with late stage nuerological lyme disease and co-infections. We have been the same route as you, on and off many supplements and antibiotics as needed (we both have had IV antibiotics which helped tremendously). My husband almost died and I was not long to follow. Thankfully, with great medical direction of lyme-literate doctors, we can all live very full active lives. Your video will touch so many lives and be an inspiration for others to stay active and stay the course. Wishing you much comfort and healing
- February 22, 2012 at 8:44 am
Wow, I am so humbled and am in tears myself from all of your responses. I made this video just being my art geek self, wanting to express what my life has become…. I’m floored by the response. I am so overwhelmed of the thought that displaying my own vulnerability could give strength to so many…. and by skating through it, giving hope. Thank you for your sincerity and so wishing I could do even more to help all of you in your healing and on your journey. The petition numbers are getting stronger but need to sky rocket even more…. continue spreading the word and lets watch those numbers climb.
- February 23, 2012 at 11:47 pm
Thank you so much for your video and petition. I signed the petition today! I went undiagnosed for years with Lyme disease mimicking many other illnesses, such as MS, Chronic Fatigue Syndrome, Fibromyalgia, etc. Also, saw many reputable Infectious Disease docs. and Rheumatologists. They all said I didn’t have Lyme! They didn’t really know or even get it. And since I moved to the West Coast they really don’t get it! I grew up in Greenwich, CT. They now have a Lyme Disease Task Force there. Everyone should know that this is a biological warfare issue! Knowledge is power! So educate yourselves! I am not able to do antibiotics due to me getting cirrhosis of the liver from taking Ambien over 10 years for sleep. The doctors didn’t tell me it was dangerous either! Now I am on a healthy road with an her called Samento (a type of Cat’s Claw) and very powerful! I will have to live a strict lifestyle probably the rest of my life! But I am going to kick this! May God Bless everyone out there dealing with this horrible disease.
- January 1, 2014 at 4:03 am
Good video! Got it up as an related video to one of my own..:) i just made a song, and a music video about my life with lyme, check it out on youtube: https://www.youtube.com/watch?v=sEUCjpOC7a4
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