>> There is a mysterious disease affecting millions of Americans and some doctors claim it does not even exist.

Tonight we look at two chronic Lyme disease and the fight to get the devastating condition recognition and resources it deserves.

MetroFocus starts right now.

♪ >> This is "MetroFocus," with Rafael Pi Roman, Jack Ford, and Jenna Flanagan.

"MetroFocus" is made possible by, Sue and Edgar Wachenheim III.

Filomen M. D'Agostino Foundation.

The Peter G. Peterson and Joan Ganz Cooney Fund.

Bernard and Denise Schwartz.

Barbara Hope Zuckerberg.

And by Jody and John Arnhold.

Dr. Robert C. and Tina Sohn foundation.

The Ambrose Monell Foundation.

Estate of Roland Karlen.

>> Good evening and welcome to MetroFocus.

I am Jenna Flanagan.

There are over 2 million Americans currently suffering from an illness that doctors claim does not even exist.

We are talking about chronic Lyme disease, a condition in which patients continue to experience serious medical problems stemming from Lyme disease long after finishing their standard antibiotic treatment.

Despite the alarming numbers, the mere existence of chronic Lyme disease is a hotly contested debate in the medical community, as many doctors refuse to even in knowledge that what their patients are experiencing is legitimate.

A new documentary titled the quiet epidemic details this fight between patients and doctors and examines the complex history surrounding one of the world's most mysterious diseases.

Here is a quick preview.

>> As a kid, I was very eager.

I was very active.

I loved to dance.

But things started to change.

Even know I knew something was wrong, I never imagined it would be like this.

>> Those are all full.

This is what life became.

>> There are more cases than HIV and breast cancer combined.

>> Right now my hands are burning.

>> You can do all the right things and get it by -- get bit by a tick, and it will change your world forever.

>> I was having a lot of patients come into my office with bull's-eye rashes and about 80% would get better with antibiotics but 20% would not.

>> Here is a lot of people that is very costly and there has been a very active effort to define not Lyme disease, but chronic Lyme disease.

>> They showed nothing wrong in the laboratory test and they figured she must be faking it.

>> This is one of the most controversial, divisive debates in medicine today.

>> The Lyme disease bacteria is one of the smartest on the planet.

It knows how to change forms.

>> Every doctor I have been to said it is all in your head.

>> We still have doctors who are digging their heads in the sand.

>> I am not sure there is a controversy anymore.

>> You are not going crazy.

>> How many people go through this and then just go home and suffer in silence?

Jenna: Joining me now are three people currently living with chronic Lyme disease.

First I would like to welcome Lindsay Keys, the producer and codirector of the quiet epidemic.

Welcome to MetroFocus.

Lindsay: Hi, thank you so much for having us.

Jenna: Next I would like to welcome Winslow Crane Murdoch.

Winslow is the film's other codirector.

Welcome to MetroFocus.

Winslow: Thank you for having us.

Rafael: Last but not least I would like to welcome Julia Bruz zese, a chronic Lyme patient featured in the documentary whose story you will hear much more about tonight.

Julia come a welcome to MetroFocus.

Winslow and Lindsay, whenever we do a story about a documentary film, I always try and ask the filmmakers, why was now the right time for this story?

What made this the moment that this was the right story to tell?

Winslow, I will start with you.

Winslow: Sure.

I think this was the right story to tell because Lyme disease has been a massive problem for a long time and the problem is only getting worse.

The film does not get into this too much but climate change certainly a big factor.

Moving Lyme disease across the country and across the world.

Ticks are becoming more and more of an issue.

This has been an issue for a very long time and that is why we thought the film needed to be made now.

We also thought needed to be made now because Lindsay and I met at a doctor's office in upstate New York where we were both diagnosed with Lyme disease.

For us, it was a way to sort of explain the strange world that we had fallen into and we were both filmmakers and we had gotten this diagnosis and we were on our journey of healing and we figured looking at what existed already in the Lyme disease landscape, we figured that a film needed to be made that could explain to people why Lyme disease is so controversial, why it is such a huge issue, and why we need to pay more attention to what.

Jenna: Lindsay, from your perspective, something like chronic Lyme, why would that be such a, I guess, a contested issue?

If so many people feel as though they are struggling with this, it seems odd the medical community would say no, you are not.

Lindsay: It is definitely odd.

We had no idea what we were getting ourselves into by getting bitten by ticks, although that was not our choice, and then making the film itself.

We were thrust into an investigation that went back to when Lyme was first discovered.

There used to be much more openness to the existence of chronic Lyme disease and the severity of Lyme.

Research was published in the 1970's, 1980's, and early 1990's that describe it as potentially long-lasting, it could be pas ssed in utero.

Then there's a 180 and there became this easy to diagnose, straightforward illness.

Why is that?

Jenna: Julia, I want to get a little bit of your experience with this.

I guess tell us your Lyme journey, for lack of a better description.

Julia: Sure.

Well, I grew up as a very active, healthy kid.

I was a dancer, a sports player, a very active member of my community.

When I was nine years old I was bitten by a tick.

Develop a bullseye rash, went to my pediatrician with it, and she kind of sent us home, told us not to worry about it.

Two years later, I suddenly became paralyzed and developed an onset in very serious symptoms of Lyme disease symptoms.

I spent a summer of my sixth grade year at 11 years old going from hospital to hospital, misdiagnosed and undiagnosed.

My dad was suddenly my caretaker.

We did not have any answers for a long time.

Until my dad finally realized it after researching my symptoms.

We went to a Lyme disease specialist, and she put me on treatment.

I got a little bit better, because I was very severely ill.

But I am still wheelchair-bound, and I still deal with Lyme disease symptoms, so.

Jenna: I am wondering how much of the film is able to get so many of the, I guess, compounding issues.

For example, having covered the issue of Lyme, I now understand that there is a great possibility of co-infections, that you don't just have Lyme.

Or the fact that not all tick bites result in that easy to spot bull's-eye rash.

Of course depending on what your skintone is, it could be missed altogether.

It seems like there is a lot under the umbrella of Lyme disease.

How much were you able to even address?

Winslow: We tried to do our best.

There is so much in the Lyme world.

We pretty quickly realized, especially when we jumped into the edit, how much we would have to whittle it down to make a cohesive narrative that people could follow and step into and understand.

The goal of the film was to create something that could be accessible outside of the Lyme community.

So people who knew nothing about it could find their way into what.

That led us to have less of a long discussion about some of these other topics you just brought up that I think are really important.

Because this was sort of the starting point for folks.

Certainly we do talk about co-infections.

Ticks can carry up to 18 different pathogens.

They are really nasty little creatures and when they bite you they can give you a whole host of different things.

When we were making the film there was a study that came out of Columbia that suggested close to 60% of the ticks in the tri-state area were carrying Lyme disease, and 30% had abuse the -- You go down that list and your likelihood of being infected by one of these tick bites starts to get really high.

That shows how big of a problem we are facing right now.

Also in terms of the conflict around Lyme disease, we do not have a lot of good research that is going into what happens when you are infected with multiple things.

When you have these overlapping infections how does that affect people and their outcomes when you were just giving them one antibiotic for a potential tick bite?

We do cover that a little bit in the film but really Lyme disease was our entry point because even that is so controversial and so complex.

And there is a whole host of other issues along with it.

One of the things you mentioned is the bull's-eye rash.

That's a hallmark sign of Lyme disease, the bull's-eye rash.

But not everybody gets it.

If you get it, you are really lucky, because it is a sign that says you should get treated and treated right away.

We know that maybe 60% of people get the rash, maybe less.

Some people get a rash but it doesn't look like a bull's-eye rash.

As you talk about different skin tones, doctors often miss it.

We had people say to us that early on in Lyme disease they didn't think Black people got it because they were not diagnosing it.

That is absolutely not true.

It is all about what you are looking for and how you are looking for it.

These are really big issues within the community that all do need to be addressed.

We start to get into it in the film but we only had 90 minutes to go into all of this and go back through all the history.

Jenna: Of course.

There's just so, so much to be discussed.

Building off of what we are hearing about Julia's story, Lindsay, I am wondering how much from your perspective and even with your own story, does the idea of not being believed -- I am not quite sure how to best describe it.

When you are going to doctor after doctor and describing symptoms that you know are happening to your body, but perhaps because that medical professional does not have something they can clearly use to check it off and say, oh, it must be this, then the patient must be wrong.

I am imagining, frequently when someone is dealing with a chronic disease, people will stay your state of mind is so important when healing.

When your state of mind is being questioned by those trying to help you, how does that help you heal?

Lindsay: It doesn't.

People who are dealing with Lyme disease are fighting a battle on so many fronts.

So many people are fighting the medical establishment, begging for belief in the absence of a diagnostic test.

It is hard to determine whether someone has an actual Lyme disease infection.

There is not a test to determine whether you actively have the infection, whether or not the infection has been cleared, whether or not the treatment is working.

So everyone is shooting in the dark here and we don't even know if the therapies that we are using are effective or not.

So that is a really hard situation to be in as a patient because we want to know that you are taking from -- taking pharmaceuticals often and that they are making a difference.

At what point do you say I am cured?

The lack of that accurate diagnostic fuels this debate because the debate around chronic Lyme disease really comes down to, do people need further treatment or are they cured?

One side of this debate would say, well, they received two to four weeks and they are cured, and the other side says no, there's research coming out of credible institutions that show the bacteria can survive antibiotic treatment, and in some cases patients need further treatment.

And when you feel like you are literally dying and someone is telling you, prove that you are sick, there's a line in our film were Dr. Spector says it should not be on the patient to prove that they are sick.

He should be on says medical professionals to find out what is going on with them and help.

So it's a really tough battle.

It is physical, it is mental, it is financial.

Out-of-pocket health care expenses are bankrupting families.

My own family has been impacted by that.

People are having to sell their homes and live in their cars to afford Lyme disease treatment for their children.

It is just outrageous that this is a disease that was discovered 50 years ago, we don't have an accurate diagnostic, we don't have an effective therapeutic, and insurance companies are not covering treatment that is demonstrating late getting people better.

That is one of our goals with the quiet epidemic, to really examine this.

This is a hard situation, but looking away from it is not going to solve it.

We need to face it head on.

Jenna: Julia, I am wondering from your experience, you told us about the journey, but roughly how long did it take before you were able to find a doctor who listened to you, believed you, and was ready and able to treat you?

Julia: It took months.

That is pretty short compared to a lot of people who go through this.

People are in that situation for years and years.

I was thankful enough to have my dad, who is kind of my advocate, he is an advocate.

He was defending me and researching the next person to bring me to.

Thankfully we found a doctor who knows about Lyme disease and was able to treat me.

But it took a very long time.

It felt like a very long time.

In those months I saw numerous doctors in hospitals and outpatient who did tell me that I was crazy, and we don't have any evidence, and there is nothing to explain this.

The only thing we can give you is that you are making it up.

Meanwhile, I had real symptoms and I was running fevers, I had extremely low blood pressure, my hair was falling out, I had numbness and paralysis.

These are the things I was being told when I have these real symptoms.

But I thankfully found a doctor.

A lot of people don't.

A lot of people don't know where to go or who to trust or who to go to next, and they are continuously told that they are going crazy, and that they are not really feeling these things, and that they are not given answers.

So even though it took longer than it should have taken, I should have been able to go to a doctor and been given an answer right away.

It took shorter than it does for a lot of people.

Jenna: OK. Winslow, I am wondering, listening to what we heard from Lindsay and Julia, how important is it that, not just Lyme, but chronic Lyme, that these co-infections, that these long lingering illnesses, be recognized by the CDC so that perhaps more doctors can have, perhaps, clear charts or tests, or something, so that this journey from infection to illness to treatment does not take as long as it seems to?

Winslow: Yeah, I think it is of the utmost importance.

500,000 people a year are being diagnosed with Lyme disease.

We think 10% to 20% of those go on to have long-lasting illness of some sort.

Those are numbers that are estimates, because we don't have a good test.

We don't know the true numbers.

It could be far beyond that.

Year after year after year, you add that up, this is a huge problem.

So, I think that it has to be taken seriously.

One of the things one of the doctors says in the film is, unless you acknowledge it as a problem, it will not be treated as a problem.

That is very much the first step.

What we realized is I think this war between the two sides in the chronic Lyme world has become so intense that a lot of the research done has been about how to prove each other wrong, instead of how do we ask better questions about how to get patients better.

That was something we really wanted to do in the film, his features scientists who are doing true scientific inquiry and going about this in the right way.

One of those doctors is Dr. Neil Spector at Duke University who is featured in the film.

He was such an incredible man.

He was a scientist but he led with his heart.

He let compassion guide the questions he was asking scientifically.

I think he was one of the best scientists I ever met.

His whole goal was how do we bring new people into this to approach this in a way that is open, honest, and that leads us where it may.

He did not care what we found, but he wanted to ask questions, OK, we see this population who is suffering, instead of stigmatizing them, let's try and figure out what is going on.

He made massive strides in a short time because of the openness he brought to the field and because of the people he brought with him who were cancer researchers and other types of researchers who just knew how to ask questions.

And other people are following his suit.

There's amazing research happening at universities across the country, at top-notch universities across the country, where this is starting to be taken seriously.

What we still see is at a governmental level, a lot of the funding coming out of the government is going to the same individuals that still deny that chronic Lyme disease exists.

That is one of the things that have to change.

We're excited because there are new folks stepping into these positions at the CDC and NIH and new funding is being unlocked for Lyme disease research.

It seems this is starting to go to better places, so our fingers are crossed on that and we will wait to see.

There is a lot of really exciting science happening in the Lyme disease community.

That's really encouraging.

The problem is right now is it is all based of the scientific level, and it is not filtered out to be patient yet.

That is what we are waiting for, for the scientific findings that are happening right now to filter down to the patient experience so it is not so hard to be a Lyme disease patient.

Jenna: Speaking of Dr. Spector, we do have a clip of him from the movie, so let's toss to that real quick.

>> What kind of a disease is what you are ostracized by the very community that should be helping you?

I don't think you have to have an MD to think there is something wrong.

What do they all have in common?

You can either say they are all crazy, or there is something out there that is causing this.

This may be some of the first Lyme science being done on this campus.

In fact, some of these projects are the first to be done in this country.

These are ideas that I have been working on and my colleagues have been working on in the cancer field for 20-plus years, and now we are finally going to be applying this to Lyme disease .

Jenna: Given what we have just seen, Lindsay, I was wondering if you could talk a little bit about who Dr. Spector was to you, and why there are, or perhaps are not more doctors like him?

Lindsay: Yeah, Dr. Spector became a very close friend.

I think of him daily.

And I wish that he was still with us, because he was so much more than just a doctor and a scientist.

He really saw himself first and foremost as a human.

He recognized that having letters after his name and going to Harvard and working at Duke was not simply enough.

That you had to be, as Winslow said, a loving, caring, compassionate human.

He radiated that to every person that he met, which was just incredible.

So he is a role model for all of us, whether you are in medicine or not.

I think that more doctors should watch our film and follow his lead.

In just a few years, like Winslow said, he made so much progress because he knew firsthand what it meant to suffer.

He had a heart transplant from Lyme disease.

He fell through the cracks of the medical system and he is a Harvard-trained physician himself.

So what does that say for people in other communities who don't have that knowledge or who don't have the resources or the access?

How much suffering is happening in those communities?

So, I think that we're definitely carrying Dr. Spector forward with us on our mission as we move forward with releasing the film out into the world.

And we're honored to carry on his legacy of staying open and leading with our hearts.

Jenna: Well, I guess quickly, if it is possible for a question about Lyme, but do you see more people in the medical community being more open to becoming Lyme literate, for lack of a better description?

Lindsay: I think a lot of people are being personally affected by Lyme disease at this point, and this is what is driving them.

Julia, her one brother is a doctor now and her other brother is a medical student, going to be a doctor.

Julia herself is studying medicine, I am sure she could talk about that more.

This is what we are witnessing, is that the people who are in denial of this issue change their minds very quickly when it affects one of their loved ones, and they have no choice but to go to a Lyme-literate doctor to get better.

I think there is more of an openness now.

We actually filmed a conference in Warsaw, Poland, a medical organization that acknowledges the complexity of Lyme disease.

There were doctors there from all across Europe.

We were standing in this room and there were probably 10 different languages being spoken around us, and it was all people who were really wanting to learn more.

So I think that the movement is happening.

I think that there's still resistance, but everyone knows someone who is suffering from Lyme disease right now, so it is becoming much harder to look away.

Jenna: We have about one minute left, but Julia, what would you want someone who is perhaps just now, OK, I heard about Lyme disease but I did not know chronic Lyme was a thing -- what would be the important take away for someone who was not been touched by this disease, from your perspective?

Julia: Watch the quiet epidemic.

Because it is very good at explaining it all.

But also, you know, just be open-minded.

Because it doesn't discriminate.

It affects anybody and anyone.

It can happen to you.

A lot of people have it and I don't even know they have it.

I think it is just about being aware of the tick problem that we have in this world.

And the dangerous things it can lead to.

So yeah, just being aware, being compassionate of others, and just being open minded and watch our movie.

Jenna: I think that is a very positive note to leave it on, even for such a challenging subject.

I want to thank all of our guests.

Lindsay Keys, producer and codirector of the quiet epidemic, as well as Winslow Crane Murdoch, thank you.

And of course Julia Bruzzese, a chronic Lyme patron who is featured in the documentary.

Thank you also much for joining us, but more importantly, being vulnerable enough to share your own medical journeys on such a challenging subject.

Lindsay: Thank you so much.

Winslow: Thank you so much for having us.

Jenna: Absolutely.

>> thanks for tuning into MetroFocus.

You can take our award-winning program with you wherever you go with MetroFocus the podcast.

Listen and subscribe wherever you get your podcasts so you never miss an episode, or simply ask your smart speaker to play MetroFocus the podcast.

Also available at MetroFocus .org, and on the NPR1 app.

>> MetroFocus is made possible by, Sue and Edgar Wachenheim III.

Filomen M. D'Agostino Foundation.

The Peter G. Peterson and Joan Ganz Cooney Fund.

Bernard and Denise Schwartz.

Barbara Hope Zuckerberg.

And by Jody and John Arnhold.

Dr. Robert C. and Tina Sohn foundation.

The Ambrose Monell Foundation.

Estate of Roland Karlen.

♪