‘I’m Not Crazy, I’m Sick’: A film dives deep into chronic Lyme disease

Elle Brooks-Tao, a filmmaker, got thrust into the confusing world of Lyme disease when a family member became infected and had debilitating symptoms for over eight years before being diagnosed.

The reported cases of tick-borne illnesses like Lyme in the U.S. had risen “to a scary degree” she said. Even more alarming was learning it was possible to transmit spirochetes — bacteria that cause Lyme and other diseases — from a mother to a fetus through the placenta. It’s a rare event, according to the CDC. But a case study Brooks-Tao encountered and experts she interviewed suggested it might be possible even for mothers who received prompt treatment for Lyme disease.

Other studies — in animal models, not humans — showed the Lyme-causing spirochete, Borrelia burgdorferi, could develop tolerance to antibiotics. Brooks-Tao, whose recent short film on modern slavery has been shown at major film festivals, envisioned an epidemic spreading under the radar. She decided to dig deep into the debates and literature around a condition disputed by some infectious disease experts —what the National Institute of Allergy and Infectious Diseases calls Post Treatment Lyme Disease Syndrome.

The resulting documentary, “I’m Not Crazy, I’m Sick,” follows three people living with persistent Lyme symptoms— their relationships with the condition, with family, and with themselves. A young father of five in Maine making it on about $500 a month sees his access to medication dwindle, a Maryland-based singer-rapper gets access to a dedicated doctor but the much of her treatment isn’t covered under her insurance, and a young woman’s family spends hundreds of thousands of dollars out of pocket to get her the best medical care. A spotlight on Elena Delle Donne of the Women’s National Basketball Association reflects the struggle that even a professional athlete has to raise awareness about the disease.

The documentary also features Monica Embers, an assistant professor of microbiology and immunology at Tulane University School of Medicine, who, around the time of filming, found Borrelia burgdorferi spirochetes in brain tissue.

With about 90% of the film shot during the peak of the pandemic with a crew of six or seven people who were all immunocompromised, the filming was tough, requiring extra care, Brooks-Tao told STAT.

But it was worth it, she said, “if a marriage can be saved, or if a child can be saved, or if someone suffering from heart failure can be saved because they watched this little documentary that put a whisper in their ear about that.”

During a conversation with STAT over Zoom, the filmmaker spoke about invisibility, perceptions of fault, and how awareness around mental health and chronic conditions like long Covid hasn’t caught up with Lyme disease.

Excerpts from the conversation are below, lightly edited for length and clarity.

How did you get interested in this topic for a documentary?

Someone very close to me got Lyme disease. And I saw them really collapse and crumble under the weight of it. It affected me so much watching it, and then meeting so many other people that had been affected by it, that it was really important to [learn more about it]. The first thing I researched was that it takes over $300,000 on average, out-of-pocket, to find even a proper diagnosis for Lyme disease. And so I started to think that if there is a documentary made about it, then maybe that would save people a lot of heartache and financial burden.

What was the process of choosing the people whose lives you followed in the film?

I knew that we wanted three different people that we could follow over a number of years, all with different access to health care, and all under a different income level. So we cast a very wide net through nonprofits, word of mouth, and all the socials. We interviewed about 300 to 350 families.

The stories were honestly heartbreaking. A lot of them, we felt as a team, were too sad to put into a film. So, even though the film is very sad, and everyone’s story is very sad in it already, that is the light version.

Why was it important to limit the heartbreak?

I think there’s already so much heartbreak around this disease because there’s no direct cure for it. If you’re diagnosed with cancer, you’re given a treatment plan within a day or a few days, and you’re loaded with a team of specialists. And you know exactly the test to take, and there are steps. With Lyme disease, once it’s turned chronic or persistent — the two main terms that are used for it past two to three weeks of antibiotics — then the steps become very muddy, and there’s no clear steps, and you often need multiple specialists to diagnose the symptoms that have developed. So, as far as heartbreak, it’s just not the story I really wanted to tell, even though our film is sad. I wanted to try to include some sort of hope, or at least determination.

What questions came up or were resolved for you throughout the course of filming?

What I did not know or expect was how divided the two sides of the medical world are about Lyme disease. Doctors on both sides, IDSA [Infectious Diseases Society of America] and ILADS [The International Lyme and Associated Diseases Society] — people who believe that Lyme is persistent, and people who believe that Lyme is not persistent, they really don’t communicate at all. They would not be together on camera. They would not be in an interview if someone else was being interviewed. The politics of it were very surprising to me, and actually made the filming process very difficult.

Did you find that within that politicization, there’s less friction about symptoms like heart failure and arthritis, versus neurological symptoms?

A lot of the time people think of getting bit by a tick or spider and symptoms that would cause a physical rather than a neurological ailment. But what you really begin to figure out about Lyme disease or tick-borne bacterias that have invaded your body is that it is very often physical and neurological. It’s very similar to long-term Covid in that way. It’ll look different for every person, and we don’t quite know why. It could be more neurological. It could be more physical. It could be a combination. … So it would depend on which doctors. But the biggest disagreement is whether Lyme is persistent at all.

Since you mentioned long Covid, any thoughts on why it’s taking so long for a similar awareness around persistent Lyme?

I think that the idea of long-term Covid and [better] understanding how something can work in our bodies has opened up the discussion that other diseases have similar effects, and that they can spread throughout the body. We don’t totally know how they duplicate, or how they hide. … Especially in children, and especially in the New England area, where ticks are everywhere, we see so many kids diagnosed with autism and juvenile arthritis, which could be symptoms. The important question is, does this child have these symptoms? And could they be [due to] an underlying immune disease? What’s causing them, if not purely genetic? Could it be an immune disease such as being bit by a tick that has sparked something genetic?

With the family from Maine [where the father tested positive, the mother’s diagnosis was unclear, and all the children had symptoms of Lyme], could you clarify whether Lyme experts you spoke to thought it was more likely the children’s symptoms might have been transmitted in utero, or that their exposure to Lyme was environmental?

I think a doctor would say that it’s definitely the possibility of being transferred in utero as well as environmental. It’s unclear when or how, because their youngest child — the little baby that we see born over the documentary — started to develop Bell’s palsy within a year of his life, which can be a symptom of Lyme disease.

Could you speak about the role of invisibility in the experience of living with this disease?

I think the biggest problem with Lyme disease is that so many people suffering with symptoms that would echo chronic fatigue or insomnia, high depression, maybe even bipolar [disorder], we see that the disease itself remains invisible because you’re being pointed in so many different directions, especially with neurological symptoms. If you don’t look sick, we don’t really believe that you’re sick.

How did you see that invisibility magnified in relationships in your film?

It is very much a “toughen-up” attitude towards people who are being affected persistently with Lyme disease. I’m guilty of that with my family member who is sick, too. I would look at them, and I’d say, “you know, there’s nothing wrong with you. I’m not understanding what’s going on here. It’s in your head.” I think that’s a natural reaction for a lot of people.

Could you speak to the place of responsibility or fault in the experiences of folks in your film living with Lyme? I’m thinking of when Atty says, after her parents have decided to take space from each other, that she feels responsible even though she didn’t choose to be sick.

People who suffer from chronic or persistent Lyme disease often feel at fault for wreckage that happens in their family life around them, whether it be a divorce or a financial strain, or a parent who becomes a caretaker, or disagreement over what’s wrong with them. They begin to crumble. People who are suffering with immune diseases are often very stoic people, so when it comes to taking responsibility, they swing over to an extreme of wanting to take responsibility for everything so that they don’t appear to be victimizing themselves … They might say that they would be at fault for things that they’re not. It’s not their fault that they got sick and their illness has affected their families and their finances.

There’s an interesting moment in the film where Atty’s dad, Peter, acknowledges that he might have discounted some of her experiences, exacerbating the situation by judging her.

I think Peter is a classic example of someone who genuinely was just trying to get to the science of it all. … It was really important for her dad to say, ‘I accept what you’re feeling, I accept what you’re going through, and I acknowledge that this is real and that something is wrong here, and that I have not shown up the way that I need to.’ I think that those words alone are more healing for people with immune and chronic diseases than someone needing to fix them or find a solution. Just showing up and acknowledging that what this person is going through is real is absolutely the most important thing that you can do for someone who’s sick.

The title for our film actually came about during a conversation between Atty and her dad. It’s not on camera, but she says, ‘I’m not crazy. I’m sick,’ laughing. And that summarizes the experience of everyone who has this disease chronically, who are often told that they’re crazy.

What do you hope audiences will take away from this documentary?

I hope for two things: One, that a Lyme disease test would be the first place that you would go if your child or you have symptoms that are out of the ordinary, or where the diagnosis doesn’t totally make sense. Most times the Lyme disease test would probably be one of the last places that you would go — that’s how it’s been with most families that I’ve spoken to. People don’t really think of Lyme disease as causing long-term arthritis, or depression, or insomnia, or fatigue. [Instead] we think of life circumstances, stressors, finances, and anything that we can hold on to. Two, I hope that friends or family who see other people suffering would maybe suggest a test. Or simply show up in patience and in understanding.

This story has been updated to include the NIH’s designation for this syndrome and other context.

Correction: An earlier version of this story misstated the acronym for IDSA.