TOUCHED BY LYME: Teenager shows world her vocal and physical tics caused by Lyme disease
Iowa girl creates a YouTube video to help people realize how serious Lyme can be.
She’s a pretty teenage girl in a purple sweatshirt that reads “Free Hugs.” She’s standing on her front porch in Iowa, talking to someone holding a video camera. She’s smiling, and mostly, her words are clear and well-spoken. But something is wrong. Several times a minute, her head jerks to the side and a weird vocal sounds—shrieks, yells, chirps—emit from her mouth, until the moment passes and she goes back to talking normally again.
About a month ago, 15 year old Morgan Miller developed vocal and physical tics, apparently due to the Lyme disease she contracted from a tick bite two summers ago. (She’d had a bull’s-eye rash and everything. But, for a variety of reasons, she was not tested or treated for Lyme at that time.)
Throughout the year following the tick bite, she developed a lot of pain and other symptoms. Last October, she tested positive for Lyme and received 3 weeks of doxycycline, which seemed to help. But soon, symptoms came crashing back, and by Christmas, she felt like she had a very bad flu on top of everything else.
In the months since then, her doctors refused to believe that her various symptoms were in any way related to Lyme disease. Then, seemingly overnight, in March 2012 Morgan started having twitches and other involuntary movements, followed a few days later by vocal tics, all beyond her control. According to her mother Jenny, “It has been beyond scary for our entire family, yet she has maintained a very positive attitude…she is determined to try to keep her life as normal as possible, which makes us very proud.”
Morgan knows the tics can seem funny to other people. She says she’d rather that other people laugh them off with her and feel comfortable being open about her tics rather than trying to pretend they aren’t happening. That’s one of the reasons she made the following YouTube video–to explain her situation to others and help educate them about Lyme disease. She hopes to post future videos showing her progress with treatment.
Morgan has just started treatment with a Lyme specialist. Her mom says her symptoms have already improved slightly with antibiotics.
.
TOUCHED BY LYME is written by Dorothy Kupcha Leland, LymeDisease.org’s VP for Education and Outreach. Contact her at dleland@lymedisease.org.
Hey thats my best friend:)
ill always be there for you morgan. and you have great confadents and thats good…..:)<3
It is so wonderful that you are being very brave and showing the world what is going on with you. Tics have not been talked about with Lyme very often. I developed tics about 6 months ago and it generally involves my right side shoulder and arm but sometimes the right side of my face. I have had Lyme for 33 years but was diagnosed only 3 years ago. Like all Lyme victims I have good days and bad days. Keep your chin up and don’t get discouraged. It’s so easy when few people understand what you are going through and the medical community can bully you in so many ways. Know that there are those of us out there who do understand and soon the world will sit up and take notice of this awful disease.
Morgan, I admire your determination and positive attitude. It is going on 3 years that I have been in treatment for Lyme Disease. I do not have the tics, but I do have alot of back pain, joint pain and swelling in my knees. I’ve also had chest pain and the medical docs say that it is NOT Lyme related. I absolutely disagree with them. Your comment “it’s the card that was dealt to me” really touched me…thank you for posting your video and wanting to educate people of ALL ages!! God Bless you!!!!
Hi Morgan! Do you have a contact number or email? Thanks
You are amazing and brave, I have had Lyme 3 years and have and still have most symptoms, so I understand. You are in my heart and prayers and are simply Amazing likeI said
Showing the world how this evil and destructive disease affects us is the best public awareness anyone can do. Lymes has stolen your life and is attempting to destroy it,
That will not happen!!!!! A beautiful young lady like you will continue to fight until the medical field and the government will have to release the handcuffs of those trying to come up with the cure.
Morgan, I am so proud of you and pray you receive some periods of peace and happiness during this so difficult of a time, keep trudging with your head held high like the video.
God Bless and keep you,
Steven M. Croak
My second video Is up(: also my mom has many health problems and tonight she got her Lyme test back and it was positive! Shes gonna get better (:
im coinfected with 3 – please look at healthcentersofamerica.com dr carol ann is saving my life!!!!!!!!!!!dont give up you are not by your self
Merci-Thanks Morgan!
we live in Canada. My daughter has the same problems since 3 years: vocal and motor involuntary movements. Sometimes, heart palpitations, leg pain, depression, self-injury.No help from neurologists. Tics from tick-bite? Non-sense they said…We have crossed the border to find help and the right diagnosis: Lyme and babesiosis. With the abx treatment (ILADS protocol) since 3 weeks, tics are less severe. The treatment will be long but we are hopeful. Thanks for sharing. You will recovery…Tous nos voeux pour que tu guérisses: all our wishes for your recovery!
Hi. Can you please update us on progress? treatments? My son is 9 years old, similar experience. Thank you.
@Nicole Tibbetts, not sure if you will even see this but in the event you do, quick background: contracted Lyme’s when I was about 10-11 and went un-diagnosed until my knee swelled to the size of a cantalope. Shortly after having it drained a few times and receiving antibiotics to counter-act the Lyme’s I developed these horrendous tics and facial movements; all of course involuntary and very violent sharp motions. Used to scare my mother that I was going to dislocate my own jaw. Doctors had no idea and misdiagnosed me as having tourette’s and gave me Orap 1mg. This drug is supposed to counteract unwanted motor movements and I have read that it has worked wonders for some people. For me this was not the case. I became very lethargic but restless at the same time. I also found it very hard to concentrate and all around hated the side affects.
Your son could have positive results by starting out at a lower, .5, dosage. For myself, SLEEP and weight training worked wonders. The more taxed my nervous system was the more I twitched. The exercise, one way or another, helped to strengthen my nervous system to the point my twitches are controlled throughout the entire day. I have my bad days when I am particularly stressed out but 90% of the time the most I do is blink more than the average person. Good luck to your son, it sucks but don’t let it hold him back.
P.S. Changing of the seasons brought it on stronger for me as well…1st week or 2 of spring, winter, etc… not sure what was up with that though.
Thank you for your story, Morgan. I’m looking for lyme literate doctor. positive diagnosis May 2010 after yrs of symptoms. did 1 month treatment at special clinic in AZ but now need local care.Im in western IA but would drive. Thanks for your help. You are a courageous young lady and God Bless your supportive family and you!