The Steep Climbs of Chronic Lyme: Nordic Skier Siri Waxes, Wanes & Wins

Siri

Actually really glad to be on this trail. Haven’t been here all winter and it’s beautiful. 

Brittany Thomas (co-host) 

It is beautiful. 

Robert Pease (co-host)

Back in March, reporter Brittany Thomas packed up her cross country skis and microphones and headed north to the Craftsbury Outdoor Center in central Vermont. 

Brittany Thomas (co-host) 

The air just like tastes good. 

Siri

Yeah no, it’s pretty nice. 

Brittany Thomas (co-host)

I got to ski with a young woman named Siri. 

Brittany Thomas (co-host)

So yeah, so I’m going to follow you.

Siri

Okay.

Brittany Thomas (co-host)

We went on a loop through the woods. Siri knew many of the folks we skied by. Lots of hellos and waves involved. And she taught me a thing or two about skiing. (Laughs) 

Siri

Yeah, like balance is a big part of it. Because it doesn’t work if you’re super loose, and it doesn’t work if you’re all stiff. 

Brittany Thomas (co-host)

It’s very clear how much Siri loves skiing. And what’s not immediately clear is how much time and effort she’s had to put in to be able to ski. 

Siri

I remember when I started my first treatment, my doctor looked at me and she said, “you’ll feel worse before you get better, if you get better.” 

[Theme Music]

Siri

There were so many days where I just sat on the couch with my head between my knees. 

Robert Pease (co-host)

This is My Body Odyssey. A show about the rewards and challenges of an active lifestyle. I’m Robert Pease, and this odyssey belongs to Siri- a high school student who’s had to learn an awful lot over her teenage years about the challenges of Lyme disease. Introducing us to Siri’s odyssey is Brittany Thomas, contributing producer and reporter. Brittany, welcome to My Body Odyssey. 

Brittany Thomas (co-host)

Thank you so much. Thank you for having me. 

Robert Pease (co-host)

First question: where did you learn to ski, chew gum, and interview at the very same time?

Brittany Thomas (co-host)

(Laughs) Was I chewing gum? Oh no. 

[Theme Music]

Robert Pease (co-host)

So Brittany, today you’re bringing us the story of Siri, 17-year old avid cross-country skier, who’s struggled with Lyme disease almost her entire life. 

Brittany Thomas (co-host)

Yeah. So Lyme disease, as you may know, is carried by ticks. And the CDC estimates that around 476,000 people are treated for Lyme every year. 

Robert Pease (co-host)

And it seems like most people respond to that treatment. But there is a sizable number of people, unfortunately, who have to deal with it for years afterwards, right?

Brittany Thomas (co-host)

Yeah. These persistent Lyme symptoms have definitely been reported a lot, but there doesn’t seem to be a consensus in the medical community as to whether this is chronic Lyme disease or some kind of other syndrome that affects people after they’ve been treated for Lyme.

Robert Pease (co-host)

Yeah, there are different terminologies. But for this episode, which is Siri’s odyssey, we’re going to say chronic Lyme, as Siri does, as her family does. But just keep in mind, Lyme is still somewhat mysterious in the medical community; there’s a lot that isn’t known. Conventional medical experts may call it post treatment Lyme disease syndrome, but for the people who have it for years and years, it’s chronic Lyme . 

[Theme Music] 

Robert Pease (co-host)

Well let’s get into Siri’s odyssey. And it is a long one for such a young person. So where should we start with Siri’s story?

Brittany Thomas (co-host)

So Siri was born in Maine. She told me a lot of stories about her childhood and growing up with her siblings, and kind of creating these worlds outside together. 

Siri

I remember being outside a lot. That’s like, where my main memories are. 

Brittany Thomas (co-host)

They would create these little, like, missions, and challenges for themselves outside, one of which was they climbed under this giant rhododendron bush in their front yard. 

Siri

Like, giant. And we would go in there and we would pretend that we were at like a marketplace, and we would sell hotdogs with the old crunchy rhododendron leaves, and then the new green leaves would be like the hotdog bun.

Brittany Thomas (co-host)

Something was always wrong with the hotdog, so they had to like throw it back at the hotdog vender.

[Laughter]

Brittany Thomas (co-host) 

So she was outside quite a lot, and that was likely when she came in contact with a tick. 

[Theme Music]

Kara

We had found a tick behind her ear. 

Brittany Thomas (co-host)

This is Kara, Siri’s mom.

Kara

And we took it off. And then a week or two later, we found the tell-tale rash, and it was just, um, covered half of her face, and then it went under her hairline. And Siri’s red locks here are really hard to, you know, dig through every day, so.

Robert Pease (co-host)

And what were her initial symptoms like?

Brittany Thomas (co-host)

You know, she was quite young at the time, but her mom noticed that she was low energy, she was feeling lethargic, and just physically unwell. Like with muscle aches. 

Kara

She was fevery and tired. And her knees hurt. And that’s when we took her to the doctor to see what was going on and he said it’s probably Lyme.

Brittany Thomas (co-host) 

Living on the coast of Maine, doctors were quite familiar with Lyme symptoms. So she did indeed test positive for Lyme. 

Robert Pease (co-host) 

And did they prescribe an antibiotic right away?

Brittany Thomas (co-host) 

Yeah, so she took three weeks of antibiotics.  

Siri

I remember thick pink medicine that the doctors said tasted like bubblegum. Um, it did not.  

Kara

Three weeks of antibiotics and that’s it. It’s gone forever. 

Robert Pease (co-host)

That’s Kara again, Siri’s mom. 

Kara

And we actually even contacted the American Lyme Society. And they got back to us and said, yep, three weeks should be good. You’ll never have to think of it again. 

[Theme Music]

Brittany Thomas (co-host)

Fast forward a few years. Her family moved from Maine to Vermont. She ended up racing on a team there, and she told me like some of her pinnacle moments of happiness were when her and a group of friends were skiing in the Craftsbury marathon and they had their full racing suit on but also a tutu, because, you gotta. 

Siri

I think there were like almost 10 of us, probably around 10. And we were all in our Craftsbury green, like, spandex uniforms. And then we had on these bright colored tutus as well. And I remember we all started at the same time and we just skied as this big pack. I think it took us like an hour and a half. And I remember finishing and taking a picture after and thinking it was like, this is it. Like, this is like the legitimate moment. Of happiness.

Robert Pease (co-host)

So things seem to be back on track for Siri. The treatment worked, she has many years without a problem, she’s in Vermont, she’s discovered a sport and community she loves?

Brittany Thomas (co-host)

She was active, she was skiing a lot. And when she was 11, she started to experience some mysterious symptoms again. 

[Theme Music]

Siri

I lost my depth perception quite a bit. Um, so stairs became like increasingly difficult. 

Brittany Thomas (co-host)

Sometimes she would trip or lose her balance. 

Siri

And I didn’t really understand why that was happening.

Brittany Thomas (co-host)

She also was having some pains in her knees. 

Siri

Brain fog that got worse, and I was really tired all the time. 

Brittany Thomas (co-host) 

She told me about a time when she was at practice and they were playing a game that is similar to tag, on skis.

Siri

And I was about to catch someone, and then I just randomly fell over. And I remember being so confused because I was like, this shouldn’t have happened. I was gonna get that person. Like, why, why did this happen? 

Brittany Thomas (co-host) 

She described her life in those moments as kind of seeing in black and white. 

Siri

It felt like I was just colorblind and there was, there was nothing to be excited about anywhere. 

Robert Pease (co-host) 

So she’s having balance issues, a bit of brain fog. Did they suspect Lyme again? 

Brittany Thomas (co-host)

Her mom at the time had had kind of a hunch that these might be lingering effects of Lyme. And she returned to the doctor, and received a few tests for Lyme to which she tested negative. 

Robert Pease (co-host)

So she tests negative, but she’s still having all these weird symptoms? 

Brittany Thomas (co-host) 

Yeah. Siri and Kara were confused, too. So we called Dr. Steven Phillips. He’s a physician who’s been researching Lyme for several decades. 

Dr. Steven Phillips 

Most cases of Lyme, the subjective features vastly outweigh the objective features. Subjective means what the patient feels, but the doctor can’t see, versus what the doctor can see. And when it comes to Lyme, what is very well recognized is that a large percentage of patients develop chronic symptoms after acute Lyme disease.

Brittany Thomas (co-host) 

Can you explain how infections can linger or lay dormant for many years?

Dr. Steven Phillips

So with Lyme, if you inject Lyme bacteria into a dog, and let the dog get sick, and don’t treat the dog, and then take the blood of the dog a month later, you can’t find the bacteria. It won’t grow in regular blood cultures. When they cut the dogs up, which unfortunately they do, ‘cause I love dogs, they find the bacteria in the dogs. Same with the mice, same with the horses, same with the monkeys.

Robert Pease (co-host) 

So he’s saying that Lyme won’t show up in a blood test, but it’s still possible to have Lyme in the body, is that right?

Brittany Thomas (co-host) 

Yeah. So the bacteria that causes Lyme is able to hide in a way in the body and evade the immune system, for years, sometimes. But not a lot is known about how exactly this happens.

Robert Pease (co-host) 

So Siri is testing negative, still having symptoms. So what are the doctors doing for her?

Brittany Thomas (co-host) 

Not a lot. They won’t prescribe more antibiotics. And they’re not sure what to do. So Kara, Siri’s mom, starts doing a lot of her own research. And she finds a naturopathic doctor that will work with them.

Kara

We did every treatment I could get my hands on when she was 11 and it hit again. 

Siri

We did. 

Kara

Do you remember them all?

Siri

We did Hyperbaric, which is like a pressurized chamber that’s filled with 95% oxygen. I hated that, deeply. I remember the Cowden protocol. There were like 12 different tinctures that I had to take, like three times a day. And then we had Aquaporin which was like this weird paste you mixed into water. And then we had the Buhner protocol

Dr. Steven Phillips

These are intensive herbal protocols and my patients have certainly gotten benefits from Cowden and Buhner protocols. You know, I’m not a naturopathic doctor, I’m an allopathic doctor. Like I said, I came into this thinking herbs were a waste of time and slowly went from kind of a right wing situation, my view of herbals, more to the middle, and maybe a bit left of the middle now. 

Brittany Thomas (co-host)

Can you tell us a little bit about how they, like, what’s happening in the body when you’re, when you’re on the Cowden protocol, for example? 

Dr. Steven Phillips

Okay. Well some herbals work directly as antibiotics, antimicrobials. You know, some herbals have antiviral activity, some herbals have antibiotic activity. So I do think that they work in a really multimodal manner, whereas antibiotics work in a very singular manner a lot of times. I don’t think that approaching these complex problems with one little tool in your tool kit is enough. I mean, it’s clearly not enough; that’s the problem. We get so many people who fail basic treatments that need a more nuanced approach.

Brittany Thomas (co-host)

So they tried lots of different treatments. And I asked Siri and her mom which ones they thought were effective. And they had different ideas about that. 

Kara 

Do you have one that you think worked best? I know what I think.

Siri

I know what you think. (Laughs)

Brittany Thomas (co-host)

It’s hard when you’re treating something that’s so amorphous and not concrete, like breaking a bone and seeing it broken on an x-ray. But whether it was the treatments, or time, or something else, Siri started to feel better.

Siri

So I started skiing again. This was when I was about, I think fifteen, was when I was able to really start functioning as a person again. After all the treatments, I just tried to keep going about normal life. It was really hard; the mental toll that Lyme takes on you is the part that nobody tells you about. Which is really stressful. But skiing helped me deal with that for sure. 

Brittany Thomas (co-host)

Can you say a bit more about why, why is exercise helpful in recovery from Lyme?

Dr. Steven Phillips 

Well, we’re not exactly sure. But I think that a few things. It’s just, uh, these are just theories. When you exercise, exercise is like the perfect, perfect example of hormesis. I don’t know if you’re familiar with the term hormesis, but it’s the concept of giving the body a little bit of something stressful, and the body gets stronger. There’s a lot that we can do. People talk about, what are the best medicines in medicine? You know, what are the best treatments? And it’s Dr. Sunshine, Dr. Fresh Air, Dr. Exercise, Dr. Good Sleep. I mean, the best doctors, the best treatments, sometimes are not at CVS.

[Theme Music]

Brittany Thomas (co-host)

She told me about a day where she was getting ready to go out for a long ski and her mom had packed some delicious sandwiches and-

Siri

My mom said, okay, eat a big lunch so that you’ll feel good for practice. We had Triscuits, salami and cheese and avocado. And we made like, little sandwiches out of them. 

Brittany Thomas (co-host)

She thought she felt really good because it had been like power food, you know. 

Siri

And I remember going and going all the way through practice, and finishing it and still having energy, and thinking that it was just the food. 

Brittany Thomas (co-host)

But then at the end she was like, you know what? Maybe I just, maybe I feel better.

Siri

I had actually had a good Lyme day. 

Brittany Thomas (co-host)

A moment of noticing these like small steps of progress that she had started to make towards feeling better. 

Siri

That was a day where I felt what I thought was slightly more normal, which was a big, a really big deal for sure.

[Theme Music]

Brittany Thomas (co-host)

I think what I felt when I was skiing with Siri in the woods was that skiing has connected her with the world; with the natural world, with other people who live in the world close by. And it has helped her feel like a normal person on the days where it was hard to feel that. 

Siri

Coming here and having a huge group of supportive friends, and being in a place where I could be around other people, and because I wasn’t too sick anymore I could just seem completely normal. Everything is okay, I’m just, I’m just a person. 

Robert Pease (co-host)

Well that’s great and Siri is getting close to finishing high school in about a year. So how is she doing now? 

Brittany Thomas (co-host) 

Siri still has good days and bad days. She’s definitely made a lot of progress. And she’s aware of herself and knows how to adjust her plans when she feels she’s having an off-day. And she knows that, when she looks into the future, she might have more days when she experiences symptoms of Lyme. 

Robert Pease (co-host)

And does Siri have any plans for after high school? 

[Theme Music]

Brittany Thomas (co-host) 

She is thinking about outfitting a Sprinter van to be able to go on the road. 

Siri

Travel all around the country. It’s something I’ve been wanting to do since I was 8.

Brittany Thomas (co-host)

She thinks her skis will make it in the small square footage. 

Robert Pease (co-host)

An odyssey of a different sort. We’re looking forward to hearing about Siri’s adventures down the road. Wish her the best. We’re hoping that Siri’s chronic Lyme history is behind her. And thank both Siri and Dr. Steven Phillips for making this episode possible. Dr. Phillips’ excellent book, Chronic, is highlighted on our website, fluentknowledge.com.

[Theme Music]

Robert Pease (co-host)

Next time on My Body Odyssey, we’ll hear the story of Kaelyn Lynch, a journalist and filmmaker, who for most of her life was extremely fit and active: backpacking trips, mountain biking, Crossfit, even roller derby. 

Kaelyn

That was a sport that combined two of my favorite things, which were hitting something and going fast. (Laughs)

Robert Pease (co-host)

But for the past year, Kaelyn, like so many others, has been suffering from long COVID. She can’t run or hike or skate. She can barely manage any physical activity at all. 

Kaelyn

I have always been someone that very much defines myself by the things I do. And I’m still trying to answer the question of, who am I when I can’t do any of the things that I enjoy?

Robert Pease (co-host) 

This is Robert Pease for the whole team here, including producers Brittany Thomas, Peter Lang Stanton and Deborah Blicher, Associate Producer Emily Crocetti and Senior Editor/ Content Manager Meg Muckenhoupt. My Body Odyssey is a Fluent Knowledge production. Original music by Ryan Adair Rooney.