For Lyme Disease Sufferers, ‘Under Our Skin’ Is Essential

Lyme disease is a silent killer, a real disease that can ruin your life.

Last Updated: November 11, 2009 @ 10:44 AM
(“Under Our Skin” screens Wednesday night at the Arclight Sherman Oaks as part of TheWrap Screening Series. Kerns will join director Andy Abrahams Wilson for a Q&A after the movie. Click here to RSVP for the screening.)
 
My daughter Ashley is 31. She’s an attorney. She went to law school. She passed the bar. She made the Law Review. She was published.
And now she has trouble reading a page in a book. She can’t drive, and three months ago she had to quit her job because she couldn’t stay awake, and was in so much pain she couldn’t function.
That is what Lyme disease does. It’s a silent killer, a real disease that can ruin your life. And until the medical community opens up and starts looking at it in a different way, it will continue to plague us.
I’ve been reluctant to talk about this until now, because my daughter is the one who’s sick, not me. But when I saw Andy (Abrahams Wilson)’s film “Under Our Skin,” I thought, oh my God, this film needs to get a lot of attention, because that’s the only way things are going to change.
Ashley’s story started when she was about 12 years old. From that age on, she suffered from intense joint pain that would migrate from joint to joint for no reason. She also had debilitating fatigue, and insomnia; when she did sleep, it wasn’t refreshing sleep. She was able to overcome it at times, but she would always have flare-ups.
From everything I read, I initially thought it was Lyme disease, and we had her tested many times. But she was being tested with the ELISA test, which we now know is a substandard test that only shows the Lyme spirochete in the early stages of exposure.
Also, the medical community in California didn’t want to even entertain the idea of Lyme. Ashley ran into every conceivable diagnosis. Doctors told us that she was overweight, that she had a little bit of hyper-mobility, that it was all in her head.
Right: it’s all in her head. You get sick, you give up a job you’d worked hard to get and where you earn a good living, you can’t think, and people are telling you it’s all in your head? On top of the pain and fatigue that she already felt, that caused her anguish and heartache and depression.
We didn’t get a proper diagnosis until recently, when I met a woman who had gone to India for treatment of chronic Lyme disease. Through her, I got to a doctor who gave Ashley a test that is looked down upon by the traditional medical community, and she tested strongly positive for Lyme.
She’s probably had it for 18 years, and she’s very, very ill right now. The only thing that’s been proven to cure Lyme is long-term antibiotics, but Ashley is so weak that they haven’t even started her on the antibiotics. She’s been doing a very strong homeopathic regimen to boost her immune system first, and then she’ll probably be on an IV and have to shoot antibiotics on a daily basis. And the thing is, we don’t know what will happen with insurance. So far, so much of this is outside of what insurance will pay for.
Unfortunately, I don’t think it’s changing on the health-care front. My doctor in Santa Barbara says he’s diagnosed three patients in the last six months with Lyme disease, but there’s a whole group of doctors out there who say the same thing: it doesn’t exist, there’s no such thing as late-stage Lyme. It’s a very political disease, and the only way it’s going to change is if a film like ‘”Under Our Skin” gets out there.
In my profession, I also see that this is an issue actors don’t want to talk about. If you’re a working actor and you have Lyme disease, you’re scared that the insurers who work on movies and TV shows won’t insure you. I think Parker Posey recently had to pull out of an Off Broadway show because she’d been diagnosed with Lyme, but she’s one of the few people who’s been open about it. And that needs to change.
So many people have stories like this, and I hear more of them every time we screen the movie. We’re in such trouble with health care in this country, because the profit margins that all these medical institutions demand are just getting in the way of people getting better. And until the medical community opens up and looks at things in a different way, and provides money for research, things won’t change.
Why is there such resistance to going down this road? I don’t know. All I know is that we’re going to do everything I can to get Ashley better. And that means supporting important works like Andy’s film, going wherever we have to go, and seeing whoever we have to see.