She had Lyme disease, then started a group to help educate about the tick-borne illness
Host Amber Smith: Upstate Medical University in Syracuse, New York invites you to be "The Informed Patient" with the podcast that features experts from Central New York's only academic medical center. I'm your host, Amber Smith. Ticks are a huge and growing concern in Central New York, primarily because of the diseases they can transmit to humans. Here with me to talk about ticks and Lyme disease is Anne Messenger. She leads the board of the Central New York Lyme and Tick-borne Disease Alliance, and she's had personal experience with Lyme disease. Welcome to "The Informed Patient," Ms. Messenger.
Anne Messenger: Oh, Amber, thanks. And it's Anne.
Host Amber Smith: OK, Anne. I'd like to start by having you tell us how you discovered you had Lyme disease.
Anne Messenger: I certainly can do that. I want to say upfront, Amber, I am the chair of that Lyme Alliance board, but I am not a doctor. I'm not a nurse. I'm just a regular human being. So you're talking to a patient who's been on a steep learning curve, not a clinician, a steep learning curve over the last four years. I was first diagnosed four years ago-ish.
Host Amber Smith: So, in 2018 ish?
Anne Messenger: Yes.
Host Amber Smith: So what symptoms brought you to a doctor's office?
Anne Messenger: The symptoms didn't do that. My annual physical did.
I was just in for my yearly physical, and I was so tired. I would get up in the morning. I go downstairs to feed the cats and thinking I got to go back to bed. Something was weird. So I go for my annual physical. I must have yawned in my doctor's face -- he's known me forever -- I must've yawned in his face 20 times. He said, what is the matter with you? I think you have sleep apnea. He sent me off to a sleep clinic. I did not have sleep apnea. I saw another doctor for a whole different reason. She, unbeknownst to me, tested me for Lyme, hearing that I had this extreme fatigue. She has a whole personal background in Lyme and had gotten smart in that field. She gave me a test for Lyme, called me a week later and said, "I know why you're so tired. You have Lyme." When I think about it now, and I think back to that time, for years I was exhibiting other symptoms that are pretty standard. I realized that I thought were just day-to-day things. Brain fog, fuzziness in my brain. That was the worst. I had a stiff neck. I had this free- floating pain, especially weirdly at the top of my left foot. I had something called trigger finger, so when I bent my thumb, it would just kind of stick there until I p opped it back open. It kind of was stuck. But I had just passed those off as day-to-day aches and pains, until I got smarter about this whole thing.
And you probably know, Lyme is called, the nickname for Lyme is The Great Imitator because its symptoms mimic many other diseases -- MS, Alzheimer's, fibromyalgia, arthritis, just a host of other things.
Host Amber Smith: So the doctor that tested you for Lyme, was that just through, she was doing blood work and she was able to just add that to the list of things to test for?
Anne Messenger: Exactly. Which in my mind should be standard operating procedure for anybody who walks into a doctor's office going "something weird is going on." Put a Lyme test in there, even though the Lyme tests today are sketchy, and many times will come back with a negative that is a false negative. So frequently people have to be tested again, and sometimes again and again. But she did it once and it came back, oh yeah, you got it. Very positive.
Host Amber Smith: So when you heard the word Lyme disease, at that point, did you know anything about it? Did you know that it was tick-borne when she said Lyme disease? What did you know about Lyme disease?
Anne Messenger: So little. I was so vague. I knew it was a thing, and it caused big time physical distress. I didn't know. I feel as if I've been in med school for the past four years. I knew very little about it. What I did know was, I had to get it addressed right away.
Host Amber Smith: So what did you do?
Anne Messenger: I got it addressed right away. That doctor put me on a very aggressive doxycycline treatment -- two months. That's very aggressive.
Host Amber Smith: So the doxycycline, that's an antibiotic, and so you were on that for two months?
Anne Messenger: Yes.
How long until you started feeling better?
Anne Messenger: I suspected you were going to ask that question. I'm trying to think how long. It probably, at the end of those two months, those immediately very troublesome symptoms. The two were the extreme fatigue and the brain fog, started to subside within those two months. I could tell. Definitely. And that whole doxycycline thing, that can be problematic for some people, especially over that length of time. My body accommodated it. I was cool with it, thank goodness.
Host Amber Smith: Once you've had Lyme disease. Can you get it again?
Anne Messenger: Absolutely. You can get it again. Why? Because it's a gorgeous day, and you want to go out in the backyard and do your gardening, and the ticks are waiting for you. They're waiting to get your blood. So absolutely you can get it again. I was one of the lucky ones, four years ago. I was just exhausted and brain foggy. I was not confined to my bed with extreme pain. I had pain, but not extreme pain that kept me there for two weeks or two months. I was not suicidal. I didn't die. All of those things happen to people. Fast forward to today. I don't know if I still have Lyme disease. I'm testing negative for it. But I've got these weird things going on in my body. I still have symptoms, but I'll tell you that I'm day 38 post COVID. I'm standing up, but I'm still tired. My couch and I are best friends for nap time. And I have this brain fogginess.
Host Amber Smith: Are there any lessons from your experience as a patient that you find yourself sharing with people, or something that you're glad you did or something you would've done differently?
Anne Messenger: My lessons learned are a roll-up over the past four years. So, I'm not sure they would be necessarily in this order, but absolutely No. 1 is prevention is absolutely the best, is the biggest lesson. I've made it a habit. So I have bug spray on my patio. I have bug spray in my car. It's a loaded with picaridin. That's a chemical that should be in a bug spray. DEET works, too. If you've got a concentration between 20 and 30% of DEET, that's a good thing. There's another chemical called permethrin that I've sprayed my clothes with. I put my cats inside because permethrin is deadly toxic for cats. The cats are inside. I put my shoes and my clothes, I lay them out. This is at the beginning of the season. I put them out in my driveway, spray them with permethrin, hang them up in the garage to dry for a day or two, and the cats can go out, and then I'm good to go. I put those on when I go outside.
Other prevention things: dress properly, wear long sleeves, wear long pants, pull your socks up over your pants. When you come back in, after you're out in the garden or just walking around in the grass, take your clothes off. Put them right in the dryer. Run that dryer for 15, 20 minutes. Ticks do not like, they die. When it comes to dry heat, they die. I actually put them in the wash first, especially when I'm grubby from the garden. But the dryer is the big thing. Do a tick check. Take a shower, a scrubby shower is what I tell our camp kids.That prevention is the first thing.
Find support. Find a doctor who actually listens, No. 1, and No. 2, if you can, knows tick-borne diseases. Find support family. The Lyme Alliance is a great support. If you get a diagnosis, and those symptoms persist, keep pushing back. "Now I want another test."
Huge lesson learned: If you find a tick -- and I have to steel myself to do this, sometimes if I find a tick -- do not panic. We have this fabulous resource in Syracuse, for free tick testing. It's at NYticks.org. You pull a tick off yourself, pop it into a little p lastic baggy, along with a bit of a damp paper towel. Put it in a plastic baggy. Go on to NYticks.org. They will tell you how to send it in for free tick testing. Send it in, and you'll get results back -- negative, that tick was negative. A big percentage, though, of ticks will show up as positive. And then you can take that to your doctor. That site that I mentioned -- NYticks.org -- is not a diagnostic site, but you can take those results to your doc and say, "Hey, I'm presenting with symptoms. And that tick that bit me is showing positive for this pathogen, this pathogen, whatever. I need some help."
Host Amber Smith: This is Upstate's "The Informed Patient" podcast. I'm your host, Amber Smith, and I'm talking with Anne Messenger. She leads the board of the Central New York Lyme and Tick-borne Disease Alliance, and she's had Lyme disease.
Now, after your own ordeal, you helped found the Central New York Lyme and Tick-borne Disease Alliance. Why did you think there was a need for an organization like this?
Anne Messenger: Because my tick doctor -- bless him, Kris Paolino at Upstate -- took me to a Lyme summit three years ago at Cornell (University.) And, the room was filled with doctors and researchers and educators. I tell people I was the only normal person in the room. What did I know about this stuff? But it became very clear to me at the end of the morning. And we've spent a day together. They're presenting their papers and talking very high level things that I had no idea about. But it did become clear to me that a lot of those folks who were doing fabulous work, world-class work weren't talking with each other. So a researcher, for instance, would stand up and say, I've got this money. I'm doing this research on whatever it had to do with ticks, and I've had these outcomes, but my biggest challenge is I don't have patients. And a doctor would turn around and say, wait a minute, I need, what do I need to learn what you're finding out. I can help you. I have the patients. I will send you their serum. Well, come on, we need to be talking. So I sat down with Kris Paolino, my Lyme doctor, sat down with him and some others and said, we need to do something about this to connect these dots. I hosted a meeting with nine players in Central New York -- doctors, scientists, a couple of foundation people, people like that, business people. I scheduled that meeting for two hours. I could not get them out of the room after two hours. It was, it was great. So, fast forward now, we're in our third year. We have a board of doctors, nurses, scientists and community members, 19 members of that board, and a growing core of volunteers who are tackling this issue, in a connecting-the-dots kind of way that we have to be tackling this.
Host Amber Smith: So what would you say the organization's mission is? It sounds like you've brought a lot of people together that really need to be communicating.
We're a collaborative to support research, drive education, and promote awareness to combat tick-borne diseases. That's official. That's on our website. That's at the top of every agenda. In a nutshell, though, Amber, we're all about education. We have clinicians on our board, but we don't do treatments. We have research scientists on our board, but we don't do research. We bring their things together on our website, our social media platforms and so on and talk about it to bring up the level of awareness and education in Central New York. Educate, educate, educate. While the doctors are treating, and while the researchers are doing their fabulous research to fix this thing, we need to teach people.
Host Amber Smith: does the Alliance take a stand about how best to treat Lyme disease? Because I know there's some controversy among the experts.
Anne Messenger: Controversy is a light word for it. There are different approaches, and sometimes they are bitterly combative. It's a touchy area because there are different schools of thought who are passionately aligned with their training and their experience, both of which I respect. What we are all about, I should say, is education, so I'm going to have to wade carefully here in how I address this question.
One of our biggest pain points in Central New York is access to doctors who know about Lyme or tick-borne diseases, know about it and can treat it. By access I mean just getting in the door. Our executive director and I, and our board members every single day get phone calls, emails, texts, "I've got Lyme disease. I'm terrified. What do I do?" All of those people are trying to line up. So what we're doing is hosting in this fall, hosting a summit. It's going to be by invitation only, probably 30 practitioners, invitation only. We're developing a list, a targeted list, family practices, nurse leaders, emergency department docs, and so on, to teach them about... They will leave that day and a half's worth of training -- for which they'll get CME credit -- they will leave that day and a half with a basic understanding of Lyme disease. They don't have that right now. Many, many doctors do not know about the signs, the real basics of Lyme disease or how to treat it. They will leave that session knowing about it.
And then we can address the other, maybe do a deeper dive into the different approaches. But right now there are basics which every doctor I'm sure would subscribe to.
Host Amber Smith: Well, Ann, thank you so much for making time for this interview and sharing with us your personal experience. I appreciate it.
Anne Messenger: Such a pleasure, Amber. Thank you for helping get the word out about these dreadful diseases, which can be easily prevented. I really appreciate it. Thanks.
Host Amber Smith: My guest has been Anne Messenger. She leads the board of the Central New York Lyme and Tick-borne Disease Alliance, and she's had Lyme disease herself. "The Informed Patient" is a podcast covering health, science and medicine brought to you by Upstate Medical University in Syracuse, New York, and produced by Jim Howe. Find our archive of previous episodes at upstate.edu/Informed. This is your host, Amber Smith, thanking you for listening.