Danny Bohn, an American professional racing driver for Young’s Motorsports, joined our Epidemiologist and Director of the Cohen Lyme and Tickborne Disease Initiative, Dr. Bennett Nemser to talk about his journey with chronic Lyme disease, the impact it has on his career competing in the NASCAR Camping World Truck Series, and his hopes of building a better understanding of Lyme disease amongst the general public.
The following interview has been edited for clarity and brevity.
Danny, can you tell us about your history with Lyme Disease?
I grew up on a farm in rural New Jersey. I started with just a lot of crazy symptoms when I was three years old and a lot of it mimicked Lyme disease, but I didn’t actually get the bullseye rash until I was five. Once I got the Bullseye rash, they started treating me for Lyme disease. It was a lot of fatigue, muscle pain. If I went swimming, and I swam for just five minutes, I had to lay down afterwards for two hours. It just knocked the crap out of me when I was younger.
My mom put me on a really strict diet because I couldn’t take the antibiotics anymore, and I’d say it was about a year and a half to two years that I struggled with those symptoms until I finally got better. Honestly, I was pretty good for a long time, and in 2015 I was told that I had gotten mono, you know, unsure of when but I started to get all these same symptoms again. But I was so young when I got it the first time that I didn’t remember all of them. Rheumatologists, Neurologists, infectious disease experts – you name it, I went to it. Finally, when nobody had an answer for any of it, my primary care doctor was like “Hey, you mentioned that you had Lyme disease when you were younger. I’ll have you follow back up with them.”
My primary care went on and tested other levels of my blood that she said would increase with Lyme disease symptoms. She called me back she’s like “We need to get you treatment ASAP”. She’s a holistic doctor, so we did a lot of probiotics and all the supplements that she recommended. I did that for about a year and then I’d say I got back to about 80% and then I moved back to North Carolina. The travel back to New Jersey and then buying all that stuff, that got kinda pricey, so I saw a doctor here in Chapel Hill.
Come December/January time, I started to get the same symptoms. I just did routine bloodwork and everything else seemed fine, so I leaned back toward the Lyme disease stuff. We all know it’s tough, you’ll never get rid of it, but I kinda would like to try to find a way to get my symptoms to go away completely and not have to deal with it again. I would say I’m back to about 90% now. So, you know how it is, it’s diet, it’s how your body reacts to it, it’s how your body fights it.
You said things started to come back in 2015, so you were in your mid-twenties?
Yeah. I’ll be honest, I had zero issues with it since the time I caught it when I was younger until 2015, so it came as a surprise how I have the Lyme disease symptoms now at 33.
It’s great that you’re feeling 90% now – how did your Lyme disease symptoms impact your racing, if at all?
So I wouldn’t necessarily say it impacts my racing in any direct way. Obviously, you know, a lot of the other drivers are able to work out a lot. Anytime that I stick to a strict workout and my body gets rundown, my recovery time with my muscles seems to be longer than the average person. If I was going to the gym now and working out, I’d be sore and weak still, rather than the average person that would recover right away.
You know, my energy levels are, I don’t wanna say 100% like a person that didn’t have Lyme disease. I’m on the fortunate side to still be able to continue my career and race with having Lyme disease, and it’s one of those things that so many people don’t believe – some doctors believe and some don’t. There’s some knowledge about it, but the tests are not always accurate and it just seems to me that it’s something that more people in this country fight with and deal with and struggle with, and are misdiagnosed because of the lack of proper accurate testing. Even treatment plans – there’s probably 15 or 20 people that’ve reached out to me and asked me about mine, because the treatment they’re doing doesn’t work. I know everyone’s different and each person’s body is different and is going to react differently, but there just seems to be a lot of confusion around the disease. It’s 2022, we have all these incredible technological advances, we should be able to figure out to how give people with Lyme disease a comfortable way to live.
People being more knowledgeable on what the symptoms of Lyme disease are, and understanding what it can do to your body, that might encourage them toward checking to see if they do have Lyme, rather than settling for false diagnoses
Why do you want to build awareness on Lyme and tick-borne disease?
Well, like I said, going through the process and seeing 20+ doctors, it seems like there are certain people that are knowledgeable about it and can help you with it but, just for example, say your insurance company doesn’t even believe in chronic Lyme disease, 9 times out of 10 treatment is out of pocket. I actually spoke to somebody last week that has chronic Lyme disease and it’s all out of pocket for them. I think as a whole, we’re not making stuff up, so if we can spread awareness and get better tests and knowledge about Lyme disease across the board, that would help people with Lyme be able to live their lives comfortably.
A lot of doctors treat symptoms; they don’t treat what the root of the problem is. I’m extremely thankful and grateful for all the doctors that have tried to help me over the years, but they tried to throw a lot of things in my direction that are incorrect. It’s like, that’s going to cover the problem, but it’s not going to fix the problem, so if you don’t get to the root of what’s causing all of it, you’re just covering things up. It’s never going to go away if you don’t fix the actual problem.
If you could go back in time, what advice would you give to your younger self? This could be about Lyme or about anything.
Oh! So obviously, growing up in a farm atmosphere, you can only do the best you can by checking yourself for ticks and being more aware of them. Obviously, if I could’ve scanned myself a little more when I was younger, or was knowledgeable on how to prevent getting bit by a tick, I might’ve been dealt a different hand of cards here.
I believe everything happens for a reason, and so I’ve been fortunate to be able to live a somewhat-normal life and chase my racing career, and like I said, I think I’m kind of the chronic Lyme disease spokesperson, I guess, for a lot for people. Some people are fortunate enough to get help right away and it works, they get treatment early and they don’t ever have to deal with it again, but I have a binder in my car that’s probably three inches thick of tests that I’ve had done, and doctors I’ve seen. I’ve been from New Jersey to Jacksonville, Florida trying to figure out exactly what it was and then we went the Lyme route and a clinic is treating me for it now. If we could help just a few people by educating more doctors about Lyme disease, then it’s a few more people that get to live the life they want to live.
Yeah, exactly. I don’t want to say that you’ve been lucky, but it’s great to see you chasing your dreams and continuing the career that you want, because we have a lot of young people that get sick and it takes away a lot of their potential. For example, they can’t stay in school because they are too weak or just can’t focus.
I agree, I missed most of 1st grade, so I ended up staying back when I was younger and graduating a year late. I’ve heard horrible stories. I would say I am fortunate; a lot of people struggle with brain fog and aren’t able to focus well. Fortunately, it hasn’t affected me much in that regard; most of my symptoms are muscle and joint pain.
At one point I had a kick-back in 2013, like migraines, and I was dizzy for a month. I saw a doctor, they put me on a migraine prescription. I didn’t have migraines for the first 25 years of my life and then all of a sudden, I have them every day. And then it just went away again. Then I had ear pain, sharp ear pain, and saw the ENT doctor for about a month. Like no answer for it, it just went away. Lyme goes wherever it can – if you have an ailment, it’ll attack that area and stay there, whether it’s your joints, your ears or wherever, it’s gonna go there and you know it’s gonna cause or worsen symptoms there.
Any other final thoughts?
Thank you guys for this opportunity to help raise awareness. I’m honored to be able to help where I can, I know we’re going to try and bring as much awareness through tickssuck.org with this Darlington race on May 6th. I’m excited, we got the “throwbacks” truck theme with the Lyme messaging, so we’re gonna get some attention there and hopefully have a good showing.
I’ve struggled – I wouldn’t say my whole life – but I’d say a good part of my later years with Lyme disease and you know, it’s not fun. If there are ways that I can help, I’m going to do everything I can on my side to bring awareness to Lyme and tickborne diseases.