Transcription of Angela Coulombe for the show Reclaiming Personal Power #248
Dr. Belisle: Today in the studio with me, I have Angela Coulumbe. In 2007, she had just finished running Beach to Beacon, a 10K road race, when about a week later, her right knee became swollen and she started experiencing mild joint aches. Within three months, she found herself mostly immobile from the undiagnosed pain. She was eventually diagnosed with and treated for Lyme disease. She was treated for two years, and over that time, slowly regained her mobility. Angela also developed an idea to recover, train for, and run a marathon.
Despite the massive setback, three years after her diagnosis, she ran the New York City Marathon. Now she is on a quest to run all six of the world major marathons to raise awareness about Lyme disease. On September 25, 2016, she will take on her fifth world major marathon, Berlin, to continue to raise awareness about Lyme disease and to raise funds for the International Lyme and Associated Diseases Educational Foundation’s Physician Training Program. She has already run New York City, Chicago, Boston, and London. She will run Berlin in 2016 and plans to run Tokyo in 2017.
Thanks for coming in today.
Angela: Thank you for having me.
Dr. Belisle: Boy, you’re a hard-working individual, considering everything. Even if you didn’t have all of the things that you’ve dealt with from a health standpoint, this is a big challenge you’ve taken on for yourself.
Angela: Yeah. There’s something about me, I think, that is a little goal-orientated and driven. Also, when I feel that there’s injustice being done, I feel like I need to do something about it as far as I’m capable of doing. It seemed to me, specifically from my own case of how I was treated when I was first initially diagnosed with Lyme disease, there was somewhat of an injustice to me, and I imagine that I’m not alone or unique and that a lot of other people are going through the same thing.
Knowing I did get well, wanting to be a voice for those people, wanting to advocate for them, wanting to try to do something to give hope to others who had the disease, that, with the right treatment, they too could recover and be well, sort of is what led me on this quest to run these marathons.
I have to say, prior to now, I thought people who ran marathons were crazy. I likened them to people who jumped out of airplanes. Why would you do something like that? You could potentially hurt yourself or die. If it’s not necessary, why do it? I think Lyme disease has taught me a lot about why people do do things like that, and why it’s important and the causes that they have behind what they do and what drives them to do those sorts of things. This became my mission.
Dr. Belisle: You were born in Maine.
Angela: Yes.
Dr. Belisle: But you spent a considerable amount of time, actually, outside of the United States.
Angela: Yeah. When I was 17, I moved to Holland, and lived in Amsterdam for a while before moving to England. I lived in England for 18 years, and I lived in Spain for two years while I studied at the University of Barcelona. I studied fine art. I’m very lucky that I have a very supportive family. My parents, although at first didn’t think they liked the idea very much, after a few years, they got used to the idea that I was going to move about and travel and see the world, and they supported me wholeheartedly.
Dr. Belisle: You’ve been back in Saco for a little while now.
Angela: Yes. Yes, we moved back in 1999, a year after my son was born, because really, Maine seemed like the best place to raise a family. Out of everywhere that I’ve been in the world, Maine seemed like the most suitable, idyllic place to bring up a family.
Dr. Belisle: Your background in fine arts has led you to a career in photography.
Angela: Yes. I studied photography at university. I started with a b-tech degree, which is a business technical education certificate from Brighton College, and that led me on the road to then go on to Nottingham Trent University to study art, and then that led to going to Barcelona for a couple years to finish off my degree.
I think photography has changed, obviously, quite a lot from the days when I was studying it. We didn’t have digital cameras. We had regular 35 mm, we had medium-format cameras, we had large-format cameras that were 10 by 8 plate cameras, and we developed everything in darkrooms. It was an exciting time when you had color printers that could print color and things like that. Watching the whole evolution of photography over time has been an amazing thing as well, but I’m happy we have digital cameras these days, and often wondered how we did so much without them in the past.
Dr. Belisle: I want to talk about the Lyme disease, because I think that’s important in a lot of people … You were saying, you came into the office here at 75 Market Street, and you weren’t here very long, trying to fill out the questionnaire that we always give to guests, before you had several people come up and start talking to you about Lyme disease. Clearly, it’s an issue that people connect with and are impacted by in a pretty major way.
I also want to talk about … It seems as if you have a very interesting mind and a very interesting way of looking at the world. Not only the travel, but you’re also an artist, but now you’re also a marathon runner. I mean, you have so many different ways that you interact with what’s going on around you. I would imagine that is impacted by your Lyme disease.
Angela: Well, interestingly enough, Lyme disease, when I was really, really ill, it left it very difficult for me to walk properly, to get in and out of bed without the help of my husband, to dress myself. Art is one of those things where it’s easy to do in a lot of different places, and it’s easy to create art even if you’re lying down. Frida Kahlo, for example, had suffered horrific injuries when she was a child. She was in a terrible bus accident, and she spent a lot of her life in a cast. She went on to create amazing portraits and did a lot of amazing artwork from her bed. I think that you can create art and do those types of things. There’s different ways of being able to do it and different ways to contribute.
I think my photography, that was hard to do during the time that I was sick, because my camera is very heavy, the lenses on the camera are heavy. It was very hard to hold a camera for long periods of time. When you are holding your camera, you kind of hold it under the body on the lens, and that hand would ache if I held it for more than five, ten minutes at a time. Doing long photo shoots was very, very difficult. Plus, having the stamina to do a long photo shoot was something I didn’t have at the time. There were just other ways to do things, again, because living in the digital age now, there was the internet, digital cameras, there’s apps on your phones that you can do things with. Trying to still stay connected to the arts was probably easier for me than it might have been for other people ten, 20 years ago.
Dr. Belisle: Do you think the fact that you could still be an artist and a photographer while you were dealing with the acute phase of the Lyme disease and then the longer phase of the Lyme disease, do you think that that gave you hope for moving through?
Angela: It gave me an avenue to express certain things, but what I really wanted to find when I was sick with Lyme was someone like me who had gotten better. That’s really what I wanted. I wanted to hear someone else’s story. I didn’t know anything about Lyme, and I didn’t know anybody else who had Lyme at the time. Actually, I did know one person. He was an English person. He was a friend of my brother’s. He played rugby on the same team as my brother. All I remember about him, though, is that he couldn’t play rugby anymore, and he was really sick and really tired, but that’s about all I knew about Lyme.
I wanted to know about someone who maybe was an average athlete and a mom and maybe local who’d been through it and gotten better, and I couldn’t find that online anywhere, but that was really what I was looking for. I did find the story of Perry Field, she’s an elite athlete. She’s a track and field star. She had Lyme disease. But again, she seemed to be in a different realm from where I was. I was just an ordinary mom from Maine who had a passion for living and embraced it — my sister says I have two speeds, on and asleep — and wanted to continue to go at that pace but found that I couldn’t. I wanted to try to connect with someone like that, or just at least hear one positive story about someone who had recovered from Lyme disease, and I found that very hard to find online.
Dr. Belisle: You were diagnosed shortly after finishing Beach to Beacon. Well, I guess, you had symptoms right around the time you were doing Beach to Beacon in 2007, and the diagnosis took a little while longer. Tell us a little bit about that process.
Angela: Sure. Well, when I finished the Beach to Beacon, which actually, prior to Lyme, that was the furthest I had ever run, was a 10K. When I finished it, my right leg started swelling up, and I really thought it was just an injury from running, because it was my first big 10K, and I really tried to push myself. I did what any person would do. Instead of going to a doctor, I went to a PT to try to rehabilitate what I thought was a sport injury. I didn’t know at the time that a swollen knee is indicative of Lyme disease.
I went to physical therapy, and after a few weeks where the swelling wasn’t getting any better, I said to the physical therapist, “Is it possible that my body is overcompensating for this injury so much that the rest of my joints are starting to ache? Because now I’ve got shoulder aches and I’ve hip aches, and I’ve got my wrist hurt, and I just don’t feel…” She said, “Not really. Not to the extent that you say you are experiencing.” Then I thought, “Oh, that must be what’s going on.”
A few weeks later, then I started to experience really bad migraines and I started to have nausea or upset stomach, and this fatigue came on — a fatigue that, if you’ve had children, as a woman you would know during that first trimester of pregnancy, you just don’t seem to be able to get enough sleep. You seem to always be tired, and it doesn’t matter if you slept 24 hours. You’d still wake up tired for some reason. That’s how I was feeling.
But, as a mom, I was able to also say, “There’s probably reasons for this. I have two small children. I have a three year old and an eight year old boy, boys, and I’m chasing them around and I’m bringing them to different events. One’s got preschool, one’s got school. He’s got soccer, he’s got basketball, this and that.” At the time, my husband had to go back to England to be with his mother, so I felt like I’m alone doing all of this.
Then we moved from August into September and my eldest son started school, so when the nausea started, I thought he’d picked up a stomach bug from school and gave it to me, so that was another reason why I wasn’t feeling well, and the stress, again, of not having my husband there I thought was playing into everything that I was feeling.
Interestingly enough, it wasn’t until three months later, in early October, where I actually finally got a bullseye on my upper arm, and then I had some smaller ones on my other arm. I actually had the erythema-migrans, which is the rash that is associated with Lyme disease, show up. My mother was coming over in the mornings to actually help me at this stage get the children ready because I was finding it difficult to do that as well as try to get myself prepared for the day. She looked at it and she was the one who said, “I think that’s Lyme disease. I think you need to go to your PCP and get that checked out.” That’s eventually what got me to the doctor and got me a Lyme diagnosis.
Dr. Belisle: You are raising funds for the International Lyme and Associated Diseases Educational Foundation’s Physician Training Program. As a physician, I know that we struggle with Lyme, and we probably don’t get as much education as we need, but I think there’s a lot of questions around Lyme. What was your experience with the medical community?
Angela: This is where it gets a little tricky. Again, I didn’t know anything about Lyme at the time, so I hadn’t gone online, I hadn’t researched it, I hadn’t done anything, because I didn’t understand that there may be controversy around it. I didn’t know that. I just thought when I got the diagnosis, “Hallelujah! Now we know what it is, let’s fix it. Let’s get better. I can’t wait to feel good again. I’ve felt terrible for quite a few months, and I can’t wait to feel better.”
What I got was I got three weeks of doxycycline that was prescribed by an infectious disease doctor. However, after the three weeks’ treatment, I felt more sick and more debilitated. At that stage, I couldn’t turn my head from side to side, I couldn’t lift my arms up over my head at all, I couldn’t raise my legs to climb the stairs or dress myself. I couldn’t get in and out of bed without the help of my husband, and even when I got into bed, I would have to ask him to roll me over because the pain in my shoulders and my hips was so great that there was no way to get comfortable, but I couldn’t do anything about it because I couldn’t use my arms to move and I couldn’t use my legs to move.
When I phoned back this doctor to tell them what had happened, I was lying on a couch, just really unable to move, thinking, “Okay, something’s wrong here, this can’t be right,” they said to me over the phone, “We all have aches and pains, and what you’re suffering from has nothing to do with Lyme, it’s just old age and arthritis.” That was it. Never had me back into the office for re-examination or re-evaluation, never did any more blood work. That was it. That phone call was the end of it.
Dr. Belisle: You’re not very old. I don’t know what “old age” means to this particular office, but looking across at you, across the microphone, it doesn’t seem as if we could really even attribute this to old age.
Angela: Well, and the other blood work I had done, because they do do a lot of blood work … They check for RA, they check for other things. They check for lupus. All of that came back negative. I was having a very hard time understanding how arthritis could come on so suddenly and so quickly and all over my body, not just in one spot. Again, I was terrified. I was lying on a couch, thinking, “What do I do now? I can’t move, I feel sick, but I have a family to look after and I don’t know how I’m going to get better.” There was that one moment of lying there, thinking … Just blind panic. “What do I do? How do I fix this? How am I going to get better? Do I phone back again and say, ‘I don’t think you understand?'”
I was so taken aback by being told, “We all have aches and pains.” That kind of blew my mind, as I opted for two home births out of choice. You can be forgiven for the first one because you don’t know, but if you do it again after knowing what it’s going to be like, you’re either a fool or it’s something that you know it’s going to hurt but there are ways of coping with that pain and there are ways you can get through it.
The days of lying when I was really sick were led minute by minute. Not hour by hour, but it was minute by minute. “How am I going to get through the next minute? This pain is so bad, Aleve doesn’t touch it. Advil isn’t touching it. Tylenol isn’t doing anything. How am I going to get through the day when I’m struggling just minute by minute to get through this experience?” I felt that was dismissed. There was no regard for that and what I was going through. I thought, “I have to get better.” It’s too options: get better or, I hate to say this, it sounds dramatic, but get better or die. That’s it. It was that clear cut at the time. I thought, “I want to live. I have a family. I want to be here for my boys, I want to see them grow up, and they need a mom.”
The search for what we refer to as a Lyme-literate doctor started, and it wasn’t easy. It was extremely difficult to find a doctor who understood Lyme and who understood the complexities of the bacteria, and was staying up with current research that was being done at the time that showed that the bacteria is very clever, it can go into different forms, it can go from a spirochete to a cyst to biofilms. It was understanding that perhaps, if you’ve had it for longer than just the day you found the tick and got treatment, there is a possibility that you may need a little bit more treatment in order to eradicate the bacteria from your body, and that seemed to be the type of doctor I needed to find to help me to get better.
Dr. Belisle: There aren’t that many of that type of doctor out there in general, but in Maine where our population is smaller, it’s probably even harder to find.
Angela: As I said, it was extremely difficult for me to find that doctor. There wasn’t a lot on the internet, there wasn’t a lot … Again, not knowing a lot about Lyme, I had to become a quick study. You do start to learn about groups like ILADS, which stands for the International Lyme and Associated Disease Society, so you start to learn about groups like that that are training doctors, and you contact them or you contact … They might put you in touch with someone else who had had successful treatment. There were ways and means to try to find someone.
However, until legislation was passed here recently in Maine, in fact, just last year, LD597, certain doctors who were treating outside of the CDC guidelines were sometimes taken before review boards and having their licenses suspended, so that was another big thing about this whole mystery around being treated and recovering, was knowing that that made it a little bit more difficult to find a doctor. Why would they want to risk losing their license?
Dr. Belisle: Yeah, it’s interesting because we had somebody on the show who talked about Lyme and also came in and talked about Lyme in our offices, and she decided as a physician that she would rather move to New Hampshire and practice there. This was probably before this legislation was passed. She was Lyme-literate, she was dealing with a lot of Lyme patients, and she had to go through exactly what you’ve described, which is, I think, put in place to keep patients safe, because if you operate outside of CDC guidelines, then maybe there’s some risk to patients.
On the other hand, if we don’t really have any other good options and we’re not offering anything to people with Lyme, then there’s a problem there.
Angela: Yeah.
Dr. Belisle: What you’re saying is very true, and it’s a very real thing that I think doctors fear and something that we haven’t figured out successfully how to manage.
Angela: Well, and here’s the thing. Between 2014 and 2015, 1,381 cases were confirmed in Maine alone. 300,000 cases were reported last year in the United States alone, and this is CDC information. That’s a lot of people who are impacted by this disease, and I think that that’s even slightly underreported, because it mimics so many other illnesses, and sometimes tests aren’t reliable and it takes a long time to figure out what has been ailing people. That is a lot of people to treat, and so you would think that perhaps more education for doctors in general is a really great thing, in order for them to be able to help people.
I think the Hippocratic Oath states … I’m not a doctor, but I think it states that you do no harm and you have to help everybody. I would like to think that that help also means trying to see them through to the best outcome for them that there is, which would be a return to health or as close a return to total health as they’re going to get, considering what damage may have been done to the body or to the tissue or to the muscles or joints or things like that. You would think that that would be the desired outcome.
Dr. Belisle: It’s very complicated.
Angela: It is extremely complicated.
Dr. Belisle: I think that you’re taking a very balanced view of this, because there aren’t any easy answers. I love the fact that you are actually trying to raise awareness about Lyme disease, and part of what you’ve been doing with the running is to bring this awareness out into the general conversation, but also conversation with doctors. You have run New York, Chicago, Boston, and London. Your next major … These are called world major marathons, this grouping?
Angela: Yep.
Dr. Belisle: The next one is Berlin, which you’re going to run in September, and you’re going to do Tokyo in 2017. How has that been for you, to do this while also dealing with the aftereffects of Lyme?
Angela: That’s a great question. When I made up my mind to run a marathon, the New York Marathon, again, the furthest I’d ever run was a 10K. It seemed to me that that would be the only way to prove that A, I wasn’t old or arthritic, B, that I had a certain pain threshold that I was able of tolerating, and it just seemed to me I wouldn’t be able to physically do it if I hadn’t recovered from Lyme disease, the one and only disease I’d been diagnosed with. That became my goal.
Having that goal, I think, was … I’m very goal-driven anyway, so it really did give me something to strive for, and it gave me some hope and some positivity in my life where, for a few years, struggling and battling this disease, you had to … It affects you cognitively, it affects your mood. It’s very easy to fall into a state of depression. Art is a great release for that type of stuff, but I’m only human. Running was a very cathartic thing to try to do and to try to get back into, and I think this idea of even going above and beyond my comfort zone, having just recovered from this disease, was a very interesting thing for me to try to understand and to manage.
When I finally started to be able to run further and further, thinking, looking at the schedule for training, “How am I going to get through a 15 mile run? I’ve never even run more than six. How is this going to happen?” On the day that you achieve it and do it, you think, “Oh my goodness, I just can’t believe that happened. I can’t believe I was able to do that.”
Again, I have to give a shout-out to a couple people, though. There was one woman, a couple women in particular. One woman, Lisa Lebonte, who I used to do tae kwon do with, and I had to stop doing tae kwon do during that time, when I started to recover, she said, “I will run with you, and I will help you train. I’ve been through the training for a marathon, so I will be there with you and I’ll help you.”
Another woman by the name of Karen Fogodier, who lives in Saco, our sons were together on a baseball team, and I would see her running through the neighborhood, and she looked very good and very strong. I thought, “Well, she must be a really good runner, and I wonder if I asked her if she’d run with me, if she would.” Again, she said she would. This is a person I didn’t know, just a person I’d seen running in the neighborhood. When she would turn up for every long run, I would be absolutely blown away that this woman was going to run 20 miles with me for no particular reason, apart from the fact that she wanted to help me succeed in this goal that I’d set for myself, and that she was a passionate runner as well.
Between those two women, they really helped feed and fuel my passion for running. It sort of became like a rebirth with every run, feeling stronger, feeling healthier, feeling more confident. All the things that Lyme had taken away from me, running was starting to give back to me. It was a really empowering, strong feeling. Experienced marathon runners had all said to me, “When you cross that finish line in New York City, it is going to be a life changing experience for you,” and there was a part of me, a little skeptical, that was like, “Yeah, I don’t know. I think I just want to live. I’ve set the bar low. I just want to live through the marathon. I don’t think it’s going to be this big, earthshattering…”
I couldn’t foresee what it would be like, but they were right. Just that feeling of accomplishing something that three years prior, I could never have imagined or dreamed about, being so debilitated and so injured, both mentally and physically, from the disease. It just felt like release. It felt like liberation. It felt like I really have let go of this now, or I have overcome it. That was the proof, right there, at the finish line. I’m probably going to tear up now, because it still, even to this day, is a very emotional thing for me, to just think about what it was like to do that … And really not just for myself, but for everybody else who I’d met along the way who had Lyme disease who had contacted me, who had heard about what I was doing to run for them. Knowing that they weren’t where I was at, but hoping that one day, with awareness, with better-trained doctors, that all those people would be able to do what I was doing just kept me going and motivated me and gave me the inspiration that I needed to get there and cross that finish line. They all keep me motivated and inspired to do it again and again and to keep going, and to keep trying to do everything that I can to raise awareness about Lyme disease.
Dr. Belisle: Angela, how can people find out about the work that you’re doing and the training that you’re doing to promote awareness for Lyme?
Angela: The website is lymebuddies.com, and that’s L-Y-M-E-B-U-D-D-I-E-S.com. Then, the second way is www.thebigfiveforlyme.com.
Dr. Belisle: I’ll give you a lot of credit for having run all of the marathons you’ve already run and gotten through all of the things you’ve already gotten through. I have no doubt that you’ll be able to finish the two that you are looking forward to finishing, and I really appreciate the time that you’ve put into this and really providing hope for people who are in your situation and even people who aren’t in your situation but really need to know more about this.
We’ve been speaking with Angela Coulombe, who is running five world major marathons, actually six, it sounds like.
Angela: Yeah, my mother wanted me to stop after Berlin. They added Tokyo in 2013, so back when I started in 2010, it seemed like, “Yeah, let’s try to go for that.” Mom, if you’re listening, plug your ears right now. No, I really would like to do Tokyo now as well, because I think, why not?
Dr. Belisle: All right. Almost did five, probably it’s six, but I’m sure you will get it done. I appreciate your coming in and talking to us today.
Angela: I appreciate you having me. Thank you so much.