Andy Abrahams Wilson is a folk hero in the chronic Lyme community.
Wilson, a documentary filmmaker and founder of Open Eye Pictures, recently released Under Our Skin, a documentary about chronic Lyme that's been selected for 18 film festivals. Wilson says a limited release is planned in late spring; there's no word yet as to whether it will play in Colorado Springs.
For now, Wilson is soaking up the attention and awards. Under Our Skin was selected Best Documentary in the Camden International Film Festival and was a finalist for an Audience Choice Award at the Tribeca Film Festival. It also won two awards from International Health and Medical Media.
Wilson has been interviewed by "America's doctor," Dr. Mehmet Oz, and has seen the movie earn a positive review in The Lancet, a respected medical journal. We spoke with him about Lyme and the movie.
Indy: Have you received a big response from the chronic Lyme community?
AAW: Oh my god, yes ... We're inundated with comments, and it's very gratifying that your work is not just out there, but it's out there really helping people. You know, people say things like, "It saved my life," or, "It's going to save so many lives."
Indy: Had you ever gotten a response like this?
AAW: Not like this, no. No, I have not made a film and I have made films that have moved people and have helped people but never anything of this magnitude. And I don't know if I will ever again.
Indy: Why do you think that is?
AAW: [Lyme patients] haven't had a voice for so long, and for so long they've been really abused by the medical system. They've been told that there's nothing wrong with them; they've been told that it's all in their head. They've gone from doctor to doctor; they've spent enormous amounts of money; they've been denied insurance; I mean, it just goes on. I mean, real, real abuse, and then at the end nothing. They're not getting diagnosed properly, and they're not getting treated properly.
Indy: Your sister, and then a friend, was infected with Lyme. What did you know about Lyme when your friend got sick?
AAW: All I knew about Lyme disease when my friend got sick here ... was that my twin sister had had it years ago, and I remember she was sick and tired and she didn't feel she was getting the help she needed and that it went on for a long time. But my recollection was that she was just lying on the couch asking for food and water, and I was starting to think she was a little loony.
So, I reflected back on that and then I thought about the seriousness of what my friend here in California was going through, and that she was having these mysterious neurological and cognitive symptoms. She would walk into the supermarket and forget who she was. Not just where she was, but who she was. And [she was] diagnosed with MS, and then ALS.
Her doctor at the time, who diagnosed her said, "Oh, how interesting, we've been getting a rash of ALS diagnoses recently." And then she was finally diagnosed with Lyme, and began treatment for that, and started getting better. But I mean, ALS is basically a death sentence. So how many people that are diagnosed with ALS and follow that trajectory to the bitter end may really have Lyme disease?
Indy: Patients talk about going to a doctor they've been with forever and having that doctor be hostile to them when they mention Lyme. Why the hostility?
AAW: I think the word in the medical community is that Lyme disease is the disease du jour. It's the thing that hypochondriac patients cling to. I think that's one thing. And they don't know anything about Lyme disease. They're not taught it. It's not in the medical books; they literally don't know. What they know is sort of the PR, the medical PR about it, which is that it's over-diagnosed and over-treated, and [instead] it's easily diagnosed and easily treated. So, that's what they believe. They believe it has a psychosomatic basis. And I think for those who may not be so nave or uneducated, what they're dealing with is fear. They don't want to deal with it. They know how contentious it is, and they know they could put their licenses at risk if they were to diagnose it and treat it.
Indy: What needs to be done?
AAW: Part of the reason for the film is, it's just not enough to say we need more research dollars, 'cause there's been a lot of research dollars, and those research dollars have gone into the same hands. And like [Dr.] Willy Burgdorfer says the discoverer of the Lyme spirochete [spiral-shaped bacteria] in our film for 30 years, money has gone into the hands of the people who produce the same thing nothing. So it's not just that we need to throw money at this. We need to create massive awareness, and it needs to happen from the bottom up, because it's not happening from the top down.
Indy: It seems like, if Lyme is really dangerous in the long term, it would be cheaper to treat patients as soon as they get sick, when it's easier to treat. Why hasn't that happened?
AAW: [Experts] have their reputation at stake. In some cases, their profession has been built on this, and they don't want to admit defeat or admit that they were wrong. They also have a lot of commercial interests, in some cases.
And it's also much more profitable to treat chronic illness than it is to treat acute illness. From a system perspective, there's a lot of money being made on keeping people chronically ill, whether you're giving them steroids, anti-inflammatories, antipsychotics, antidepressants. There's a lot of money in that. And there's not a lot of money in antibiotics.
Indy: There could be many different strains of Lyme, right? And many co-infections [other tick-borne illnesses] as well?
AAW: Yes. And I think what's happening because of all of this, is it's not showing up as one thing in all people. And so, we have to take into consideration the individual. It's not cookie-cutter medicine, and we've been living in an era of cookie-cutter medicine for so long. And bless their hearts, but physicians don't know how to deal with it.