LAURA BARRON-LOPEZ: As summer weather approaches people are spending more time outdoors, but in certain parts of the country, that could mean an increased risk of tick bites.

And with that the spread of Lyme disease.

According to the Center for Disease Control, as many as 476,000 people in the United States contract Lyme disease every year.

Ali Rogin speaks with one person who's been battling Lyme disease for years, all while mounting an effort to improve both diagnosis and treatment.

ALI ROGIN: For most people who get Lyme disease symptoms go away after a two to four week course of antibiotics.

But for five to 10 percent of patients debilitating symptoms like cognitive impairment, muscle aches, joint pains, and brain fogginess can stick around much longer.

Many people who have these long term symptoms refer to it as chronic Lyme disease, but the Centers for Disease Control does not recognize that term.

The CDC says it's unknown whether long term symptoms are caused by the bacteria that causes Lyme disease.

The Chronic Lyme disease community believes much more research needs to be done to improve diagnostics to detect Lyme disease, and the extent to which the bacteria remains inside the body after treatment.

One of the people advocating for more awareness and research on Lyme disease is Lindsay Keys.

Lindsay received a Lyme diagnosis in 2015, and has directed a documentary called The Quiet Epidemic, partly to spread awareness and partly as a way to process her own health journey.

Lindsay, thank you so much for being here.

And let's start there with your own journey.

You were diagnosed with Lyme disease yourself.

Tell me about that experience.

LINDSAY KEYS, Co-Director, "The Quiet Epidemic": Yeah, in 2015, my health completely unraveled after years of mysterious symptoms.

I was living in New York City at the time, I was 26 years old, and I was losing my memory.

I lost my ability to read, I was experiencing neurological pain, joint pain, it would migrate throughout my body.

My mom actually tipped me off to the fact that I had had Lyme disease two years prior, received the short course of treatment.

And it appears that I wasn't actually cured, and my health just completely tanked at 26 years old.

ALI ROGIN: In your documentary, you show that even the experts who originally found the bacteria that causes Lyme disease, they eventually then went on to disavow the notion that the bacteria stays inside the body and can cause these chronic symptoms.

But I'm just curious based on your research and reporting, why is it that this issue of chronic Lyme disease has become so controversial?

LINDSAY KEYS: So the debate is over whether there's an active infection in the human body or if there's this damage that was done from a previous but treated infection.

And because of the currently available diagnostic test, we don't know if it's an active infection or a past infection.

And in lieu of having an accurate diagnostic and a treatment for all stages of the illness, people really need to know what's at risk.

ALI ROGIN: The notion of faulty diagnostics, that seems to be a very basic thing that you want to try to improve.

LINDSAY KEYS: Yeah.

ALI ROGIN: Why is that not happening?

LINDSAY KEYS: I am still so confused about why there hasn't been more of a push to improve the diagnostics.

I think the progress that we are seeing is hopeful.

And it's mostly because of the work of advocates of people who are personally impacted.

I think some of the early experts who were tasked with solving this underestimated the scale, the severity, and the intelligence of Lyme disease.

ALI ROGIN: You were on Capitol Hill talking to lawmakers, what did you tell them?

What was the response?

And what do you hope to get from some of these meetings?

LINDSAY KEYS: Yeah, so we told them about our personal experiences, and they expressed their unanimous support, and many possibilities moving forward.

Ultimately, we do want to call for a congressional hearing, to discuss publicly on the record how we got to this point, the work that is being done now at the CDC and the NIH, and how do we keep people safe in the meantime, and those who are currently suffering how do we deliver them the treatments that they desperately need.

ALI ROGIN: I want to talk for a minute about what the CDC has said they do not recognize chronic Lyme disease.

They say it's a syndrome related to a panoply of symptoms that present themselves, but we cannot definitively derive it back to the bacteria that causes Lyme disease.

But they do say that more research needs to be done to understand the impact of prolonged symptoms.

They also added the bacteria that causes Lyme disease to a list on their website of what they call disease agents linked to chronic symptoms.

What do you make of that?

LINDSAY KEYS: That's a step in the right direction, acknowledging that the Lyme bacteria can lead to chronic symptoms.

But, you know, the scientific evidence does suggest that maybe not in all cases, but in some cases, it is a persistent infection, that these short courses of antibiotics that we're expecting to cure humans are not curing mice or not curing monkeys, horses, dogs.

And there is some research that shows that the Lyme bacteria in the absence of antibiotics starts growing back in the body.

For some people, yes, maybe they don't need more antibiotics, for other people like myself.

It wasn't the only answer.

But it was definitely a stopgap measure.

And if not, for them, I definitely would not be sitting here talking to you today.

I would be amazing if there if there were other alternative therapies available that were backed by the science.

And, you know, we need clinical trials.

The last Lyme disease clinical treatment trial funded by the NIH was 18 years ago, and there's never been a clinical trial funded to explore overlapping tick-borne infections.

When we say chronic Lyme in many cases, people are infected with more than just Lyme.

And that may be why they're not getting better with this short course of treatment, because some of these infections are viruses and parasites.

ALI ROGIN: One of the things I wanted to ask you, we have talked a lot in the last few years about long term symptoms of COVID.

And I wonder if that's changed the conversation at all?

LINDSAY KEYS: Enormously.

So we do know now because of the scale of suffering from long COVID that acute infections can induce chronic conditions and illnesses.

So I think that with long COVID other chronic conditions that have been associated with infections, if we can all band together, and do the research, share the findings and you know, focus on helping these patients then we might be able to solve a lot more if we're working together.

ALI ROGIN: Lindsay Keyes, director of The Quiet Epidemic and herself, a chronic Lyme disease activist, thank you so much for joining us.

LINDSAY KEYS: Thank you.

Thank you for having me.