Colorado Tick-Borne Disease Awareness Association

Monica White shares her experience with Lyme disease

Monica White, a Wildlife Biologist and the founder of the Colorado Tick Borne Disease Awareness Association, expounds on her personal encounter with Lyme disease. Suffering from debilitating illness, she spent seven and a half years struggling to obtain a diagnosis. Following this, she became resolute in her commitment to help provide resources that were previously unavailable to her, aimed at expediting the diagnosis process for others afflicted with tick-borne diseases and spreading awareness to those in Colorado. 

Colorado Tick-Borne Disease Awareness Association (COTBDAA) is a 100% volunteer run 501(c)(3) non-profit organization. COTBDAA's mission is to elevate awareness of Lyme and other tick-borne diseases/conditions through education, prevention, research, advocacy, and patient support throughout Colorado and beyond.

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Transcript of the Interview

Mary Collins: Hi, this is Mary from Insect Shield and I am with Monica White. The founder of the Colorado Tick Born Disease Awareness Association. Um, can be found at Little simpler.

Uh, welcome, Monica.

Monica White: Thank you. Thanks for having

Mary Collins: Absolutely. Um, so I guess we'd always just wanna start out with, with your story, um, your background, um, kind of what you did, kind of free getting involved and kind of why you got involved with the, with Lyme disease and tickborne, uh, disease, uh, work.

Monica White: Yeah. So, um, I was born and raised on the East coast and, um, you know, spent my life in the woods. Camping and fishing and hiking and um, you know, literally rolling around in the grass and the leaves. And, um, went and got my education in, in New Hampshire as well, my further education as a wildlife biologist.

And um, and then I moved to beautiful Colorado and, um, Really didn't know much about ticks, didn't know much about Tickborne disease. I think I had heard about Lyme once my entire time growing up on, on the East coast. Um, and then I got sick after the birth of my second child. So I was working out in Colorado as a wildlife biologist and was under a lot of stress and, um, started developing some really crazy symptoms.

Um, going doctor to doctor, not being able to figure out what was going on. Um, My son, who was a newborn at the time was also experiencing, um, a lot of strange symptoms. Um, and then in retrospect, my first child had as well, but without any knowledge or background. Um, It took seven and a half years to get an accurate diagnosis of Lyme and multiple tickborne infections.

Even though I had been a wildlife biologist my entire career, I had lived and worked in the woods, um, as a wild land firefighter. I'd camped with no tents. I had traveled the country, many endemic states. Um, even with that information. Couldn't get a doctor to, to even test me for Lyme. Didn't even think about Lyme.

So seven and a half years into what became debilitating illness. I finally did get a, an accurate diagnosis and, um, started on the journey of, of treatment. Um, and at that time I decided, you know, as soon as I'm better, um, we've got to provide the resources that were not available to us. Um, I worked for a federal agency as a, as an outdoor worker, and not once did we get any education on prevention, um, risk of tick bite.

Mary Collins: I mean, had you been bitten by ticks before and did, was there any instruction of how to remove them or just,

Monica White: yeah. I've been bitten by ticks many

Mary Collins: you were burning them off and putting Vaseline, probably

Monica White: Vaseline, the matches, you know, you name it, all the, all the things you're not supposed to do to remove a tick is how ticks were removed when I was younger. Um, I had also gotten really sick in college, um, with an unidentified illness in retrospect, like it was classic Lyme, baia, anaplasmosis.

Um, but I was tested for everything but tickborne diseases at the time. Several months later, I recouped my energy. I seemed to be okay, and I went on with my life until the birth of my second child. And so I think just that additional stress, um, and other stressors, uh, is what, and another tick. Right before I got pregnant, um, was what kind of triggered the cascade of the illness for me.

So yeah, no knowledge prevention was, uh, unknown. Um, even as a wildlife biologist had no idea of the number of, of illnesses that could, you know, manifest after a tick bite. And so, um, So I really, really wanted, um, to provide the resources that weren't here for us in Colorado. Um, you know, we're, we're in a state where Lyme is not considered endemic by the state of Colorado by the C D C.

Um, so it, it's a hard sell to, to push prevention when, um, acknowledgement of even, you know, some of the more common diseases we have in Colorado aren't. you know, really considered a high risk. So I had my work

Mary Collins: yeah. So you, you, sorry, . Um, yeah, so when you, so you decided, so you just seems like you've, like, you're obviously, you know, educating and studying and, I mean, and to be a wildlife biologist, I imagine it's someone, there's a lot of curiosity and, and just in the world and life, so. Instead of just having a group like, oh, I wanna meet other people that have like lime and I can maybe learn from them and talk from them.

You're like, no, I wanna go more. Like, let's help people and be the leader. Cuz we're, I mean, even just to find groups. Could you find other people in Colorado or did you find them once you put it out there? Once you started this, did you then find a community locally?

Monica White: it seems like as soon as I started putting it out there, a couple of other people in Colorado. , we're putting it out there at the same time, like LivLyme. Um, founded about the same time we did, um, with, with, you know, uh, common interests and different, different, um, missions. So, um, I really believe like the more we put out there, the more things started to happen.

um, even with reporting of of Lyme. Lyme is a reportable disease in, in Colorado. And, and yet, um, the state, uh, will say that none of those reported cases have, um, generated out of Colorado. So they're all travel related. Um, . But what I did notice over time with that reporting is that as soon as we established, like there hadn't been a reported case of Lyman in over a decade, as soon as we reestablished, then there was a case, then there were a couple of cases, and in 2019, like we had a record high for Colorado, even if they all came from travel, um, of eight cases.

So like over time. . I think just more awareness the more people knew what to look for, whether they were getting sick endemically or through travel. Um, and more cases are getting reported. So I think just that general awareness is helping people get to help faster.

Mary Collins: Well, cuz yeah. I mean, you hear so many. Of, you know, people just think they have Yeah. Like you, I mean, what's wrong with me? And if you're somewhere that there's no conversation about it goes on and on. But then at least if someone's like, maybe there's a tick, and then maybe if you can find a lyme literate doctor that can, and the

Monica White: Right. I had no idea what a Lyme literate doctor was when I got sick. Um, didn't know about the, um, pitfalls of testing, um, the information that I sought out from reputable places. Um, , um, convinced me I did not have Lyme because the symptoms didn't match what patients are experiencing, um, in, in the bigger picture.

And so like, it, it was a hard living in a, in a low incidence or no incident state or that specific disease. It was a very hard, um, Path to get to somebody that could help and we just, you know, my whole family be, was ill with, with Lyme and we really just didn't want another individual or another family or another child to go years and years and years without a diagnosis or without the resources to make decisions, um, that are important to make the earlier and the illness the

Mary Collins: right. Sure. Now, what year did you start the association?

Monica White: We established in 2016 as a nonprofit. I had done some things privately prior to that, um, just because like as soon as I started feeling human again, I just couldn't like, contain myself. I'm like, everybody needs to know how to protect themselves. They need to know how to prevent a tick bite. They need to know that there's more than one kind of tick on, you know, in, in Colorado, in this country.

throughout the world. Um, they need to know it's, it's more than Lyme disease. I mean, the, the number of, uh, pathogens that, that we are aware that can be transmitted, um, you know, are almost at 20. So, um, just, just really curious too about, um, When we were building our webpage, what did we know about ticks in Colorado?

And the more I started researching, um, I couldn't find the references for this list that had been produced. And so I dug, you know, my research brain just kept digging and digging and digging and, um, found my way to a, an incredible, um, Incredibly passionate person used to work for U S D A, um, Joel Hutchinson, Dr.

Joel Hutchinson. Um, and he was just as interested in figuring out what we had in Colorado through records and specimens and previous studies. And so, um, we gathered a little team and, and, um, With their professionalism and my curiosity and, um, research abilities. We, we were able to publish on, uh, ticks and tickborne diseases in Colorado as kind of a baseline of what has been found here.

Not just the tick species, but the pathogens that we know have been detected in either ticks or small mammals.

Mary Collins: And that was, that's actually cause I found that we've been working together at c v with, with Insect Shield. But I saw that, I mean, to actually then have gone and you've published a paper and what journal was it actually published in?

Monica White: uh, journal, uh, medical entomology. Yeah.

Mary Collins: that's pretty amazing to go from. Okay. Just, I mean, so the, the, trajectory of life changing, but that also, you already have the background of being like probably doing this, but you just hadn't done it.

Like for ticks, you're doing it for other,

Monica White: Yeah, never in my wiwildest dreams did I everhink I would be interested in ticks the way I have become.

Mary Collins: pretty, it's, they're, it's, I mean, I've gotten more, it's, they're pretty fascinating. That's just really what, how they, how they maneuver and what they do. And um, and unfortunately all the pa like you, all the pathogens they can carry.

Um, so the group, so you published, so that paper was published. Did that kind of bring some more attention to you and into Colorado?

Monica White: Um, , I know we've had a little bit more research generated in Colorado. I'm not gonna say it was due to our publication. I think, uh, interested parties in the right place at the right time has definitely helped. Um, and, and we kind of are a black hole here. Like there were studies done, um, in the early nineties and there was information gathered back then, but then there's this huge gap of, of research knowledge that's just kind of.

um, you know, developed and I think it's starting to come back. So, um, you know, and I, and I do understand the, the states that, um, are dealing with, you know, high, high levels of Lyme disease and the research dollars going to states that, that have that known prevalence. Um, the problem is a lot of the information about Colorado is kind of based on lack of data. Not that there's, um, that it, that it isn't there, it's just it hasn't been collected. So, um, a lot of, a lot of statements made, um, with no data to support. So

Mary Collins: Well, at least I guess now, if someone is like, they're in Colorado and they're just like, oh, I got a tick. Is there something, even just Googling, if you type in Colorado and ticks, you can come, you know, you get to someone like you and say, okay, there is something happening here, and I should think about maybe saying to my doctor there was a tick, you know, that I ran

Monica White: Absolutely. Absolutely. Yeah.

Mary Collins: And then the other thing, so you know, so obviously then the research and trying to just bring attention to Colorado, but then I believe you work just kind of more on the national level of just legislative trying to do advocate for people with Lyme disease and tickborne disease. And we were discussing before just, you know, is like, you know, getting it like in workman's comp and insurance to help, you know, that type of thing.

So I think you do some work with the national groups as well.

Monica White: Yeah, I, I, I've tried to advocate, um, at a national level, wherever, My voice seems appropriate. Um, so for the Tickborne disease working group that h h s had over the past six years, um, I was on a subcommittee group for two of those panels over the six years. So four years out of the six years, um, I've been participating with centers, um, For Lime action with their DC fly-in, um, urging for more research dollars, uh, into Lyme and other tickborne diseases.

And, um, all I can say is, you know, as soon as advocates started using their voices there, um, at a national level, those, those dollars started to increase. And, um, and I've seen things happening. Um, the more, the more those voices get elevated, um, you know, Do I wish it were faster? Yes. But, um, to see progress is amazing.

Um, because, I mean, the truth of the matter is our family was devastated.

Mary Collins: How is your fam, I mean, are you, how are your, you have two boys.

Monica White: I have a boy and a girl.

Mary Collins: how Are they okay now, or is the.

Monica White: um, we are still. Battling and some arenas there. Um, even, you know, with, um, a 19 year old and a 17 year old. So, um, um, my son and I were more susceptible, my husband and daughter. Uh, responded better to treatment. So, um, there's been, you know, relapse and, and re-treatment, um, for everybody.

But my husband actually, so, uh, he did really well with his initial treatment, but to discover our entire family was ill after so many years of trying to figure out, like literally putting out spot fires, um, and not understanding how it all connected until, um, complete Strangers. Were saying, have you been tested for Lyme?

And I'm like, what?

Mary Collins: Yeah, no, I was talking to, yeah, some other, um, folks and they're like, oh yeah, someone at like the gas station, like mentioned it to me like, oh, you know, and like there was this world out there, but, and then a lot of times they go to the doctor and, uh, yeah, there's still, obviously, there's no, no.

Acknowledgement. Um, there was a boy in Pennsylvania who had powassan this last summer, and I actually spoke to his mom and he, she saw the tick, she collected the tick, she took the tick to the doctor, to the hospital, and they were like, it's not the tick. And then they, so it took him another two weeks. And luckily they did diagnose him, but if they had immediately, um, so just the dis discounting has gotta be tough.

So within your group now, what do you all. So you've got, do you, do you have meetings now? I mean, COVID I know kind of blocked a lot of stuff for people for a couple years. Are you

Monica White: Yeah.

Mary Collins: gather.

Monica White: We are just getting back to some in-person. I, I did one. We, I mean, I used to spend my time going and, and talking to all the government outdoor agencies. Um, safety and prevention for employees and it really did ramp up the awareness, especially for firefighters and other field going folks. Um, In our region, which was great.

Um, with Covid, of course, we didn't get to do the in-person as much, so we're just starting back this year. Um, we're gonna have some pretty exciting activities coming up in May, beginning in May. Um, that I'm not sure I can announce yet, but I will soon

Mary Collins: Okay.

Monica White: but I'll soon.

Mary Collins: Okay.

Monica White: but we, uh, partnered with Colorado Lyme and, um, tickborne Disease Support Group.

So on a. Monthly to bimonthly basis. We either host open forums where patients can just get together and find support and share information, or we're hosting, um, guest speakers or even activities. We have, um, we have a, a yoga for, um, you know, chronically ill, those that. Very mobile coming up on Sunday. So we, we do, um, we do do a lot of patient support.

Prevention is huge. Getting into the schools, um, partnered with

Mary Collins: yeah, the prevention's key, and one thing I've been talking with some other, because there's so many great groups who support, but then it seems like some of them. They kind, the, the prevention side of it just gets kind of not mentioned and not wor like obviously you don't wanna get re bitten, you know, if you get, or sometimes some people you get bitten again and that's not always a conversation.

So I think with you all really trying to be about awareness and education. And also of course, helping people that you know are ill and how maybe some ideas and how they can feel better, but then also saying, how do we not get bitten do not rebitten? You know, and that's where sometimes it's like we gotta that part of the message cuz it's um, , you know, we were talking before, you know, you go to the vet and the first thing they ask is, you know, what type of flea intake prevention is your dog on?

And if you're not, if they're not on any, you're just like, you're a bad pet parent. And yet, you know, you're not going to, you know, kids aren't going to school or say the kids, the school, I mean, you're in Colorado, they're probably going out on camping trips or you know, all over, um, or in New Hampshire you were.

It's, um, and not having, like thinking how are we going to, uh,

Monica White: and no joke, I was, I was that mom that brought all of the information about ticks to the sleepover camp here in our local area when my children were in fifth grade and nobody wanted to see it . And then, um, my daughter was the first child that. , um, I had to remove a tick from, and it wasn't embedded, it was in her clothing, but the cabin I was staying in, I made sure that all of the children turned their clothes inside out, tick checked each other, showered, and then we took turns going through hair.

Um, and I know I was probably considered, you know, the crazy mom, but, um, I don't know how it was my daughter that had the first tick. , um, you know, just the way things go, but then, you know, 10 more children on that same trip had ticks and maybe didn't get the same level of precaution as the, you know, the cabin that I stayed in.

Um, I feel like that kind of information is starting to be received a lot better than it was 10 years ago. So, um, you know, it's. , that is, that's a priority for us. Like, just making sure people have the information, know what to look for, know what their tools are. Um, because there are a lot of choices and, and I know people have very strong feelings about, um, what they do put on them or don't put on them.

Or put on their pets. Or don't put on their pets. And, and just knowing, you know, all of the options available to help prevent the tick bite because you know, that's key.

Mary Collins: Mm.

Monica White: It's, it's just absolutely key to staying well

Mary Collins: Right. And it's not the unfortunate and it's not that hard to do. I mean, they're everywhere and you've met many people, miss 'em, but it's, it can be done if there's just a little bit of consciousness, a little bit of change. Um, and it's, we were, I was talking with another person about it too. It's like sun protection, you know, 15 years ago, like.

None of, you know, that was not a, a huge priority often, and then now it's, you know, gosh forbid, you know, you don't have your, your sunscreen. So hopefully with, you know, folks like you and other people, it's like, okay, that just becomes, you know, an everyday thing. And we, and you know, I've got deer. I live in like the suburbs, but like, they're deer in the yards, in the, you know, running around.

Um, we wake up and like, oh, it's a deer. And you're like, you know, and so even just out in the yard, it's not, it's not. you're adventuring out into like the wilderness I think is, you know, a key message too for folks

Monica White: Yeah, I look at small mammals with a whole different light than I used to , you know? Um, and, and with the children, like I, I've been very lucky, um, in my local community, our public health department is very proactive, and so we have worked together on campaigns, um, for getting this education into the schools and bringing it into the community and, um,

And I know I'm very lucky that way. Um, Colorado's a big state, so I'm hoping to develop some of those relationships at a larger level too, because you know it, even if our risk is lower here, doesn't matter because one tick bite matters and people travel

Mary Collins: Well, I was gonna say, that's the thing. I mean, America, we pri I mean, that's one of the things, um, we'd like to go places, so it's like, yeah. I mean, there may be most cases from somewhere else, but most people go in our, like, go some trip from the summer. In the winter they go in places. So as long if they come home and like.

And maybe they didn't. There aren't, you know, these many ticks in Colorado. But there has to be support cuz if you get it, you go back home and then you are dealing with a doctor you need to have like that they know what they're managing. So I mean,

Monica White: And we do have, um, you know, from from the study that we did, we have. Um, 28 different species of ticks in Colorado and, um, a, a large percentage of them are of either veterinary or medical significance. Like they're important. So it's, it isn't just Lyme, it's um, a lot of other diseases that can be.

Just as debilitating or more debilitating, especially if not, you know, caught and treated quickly. So, um, tick prevention, regardless of what tick, a message that needs to be at a national level and not, not even at a state by state level, I think.

Mary Collins: I mean, it's unfortunate, but I think like Alpha Gal, which for, you know, with creates the meat allergy and a lot of digestive issues and, you know, um, that often gets, you know, when we tell people, You know, a tick bite could maybe make you allergic to red meat and or, you know, or to meat. And some folks, I mean, their eyes open because there's some fo like, that would be a big change to my life, not considering, of course, with lime and other things when you can maybe, you know, be debilitated and not walk and have other, um, you know, really bad.

But something like that for some folks, you know, it's like that can just, if it can turn. That light bulb, like, oh, I don't want that. It's like, well, you don't want any of 'em. But if that's one can almost relate to. Cuz there's something about, you know, food is just such a, you know, part of, you know, the, uh, the enjoyance of life.

Monica White: Absolutely.

Mary Collins: and I know one thing with that group too, is that really can get re-triggered by another bite. So they're the prevention side too, and I think that's where, um, you know, If folks just take some simple precautions, um, and like you just saying like, just so you know, and check yourself and learn how to remove a tick and send a

Monica White: Yeah. Proper removal. Proper removal. the

Mary Collins: making sure you know what it is and you know, do you have to worry or do you not?

And how to go to the doctor. Um, I mean, I've learned so much from so many people about, what you do, cuz it, you know, doesn't have to be debilitating. And unfortunately there's folks like you who, you know, your. , it was dramatically impacted

Monica White: And, and mostly due to um, you know, this cyclic argument that, um, I can't have lime cuz I live in Colorado.

Mary Collins: Right,

Monica White: I have Lyme and multiple other diseases, and I didn't always live in Colorado and I traveled and, um, and so do a lot of other people

Mary Collins: I mean, Lymes been, yeah, it's been found in every

Monica White: mm-hmm. . And, and it is in, um, you know, a cousin to the Blacklegged tick here in Colorado.

Different species of Borrelia are, are here in Colorado. And, um, and that's just, you know, another awareness piece. And even working, we, we have a partnership with, um, a Broke Conserv Conservancy of the Rockies. So they, they are, Trapping birds, breeding birds as they go through the state fall, spring, and, um, we've been having them send us the tips that they collect off of the birds each year just to, to track, you know, what we might be having come through if, if we have anything coming through.


Mary Collins: I don't think a lot of people realize that birds carry. And then also that's where some of the migration of some of these tickborne diseases because a bird could get the tick in another state cuz birds travel too, you know?

Monica White: Right, exactly.

Mary Collins: actually a big part of movement of ticks.

Monica White: Yep. Yep. So we're we, uh,

Mary Collins: on more, like, are you doing any other research papers like that? So you worked in that group, is, is that something you

Monica White: I'm not working on, yeah, I'm not working on any research papers right now. Right now we're, um, working on a giant awareness campaign for this year and, um, and so we're, we're hoping to make a big, big impact on a statewide level. Um,

Mary Collins: I hope we can continue. We, insect shield will be happy to support your efforts because, um, you know, that's part, it's, you know, we, we make a product that works, so when we have a business, but it's like to know that there's what we are can offer people and what they can use can really help and they can go enjoy outside and enjoy nature and, and, you know, and really feel protected.

Monica White: absolutely. It's a, it's a part of our, you know, daily. routine. I mean, we have, you know, our boots are sprayed and our packs are sprayed. And, um, every season I'm either buying new pre sprayed clothes or, um, respraying the ones we have. And, um, you know, it's just, it's another level of protection, um, because the last thing any of us need is another, another pathogen to contend with.

And, um, and we are seeing, you know, movement that we have, we have occurrence of the Lone Star tick in Colorado, which hadn't historically been here. Um, not sure if they're an established population, but they're on the map for the state right now. So, you know, it's, it's just another level of awareness. And ticks are moving, pathogens are

Mary Collins: Yeah, and I was, I mean, and the, and when one tick lays it's bundle of eggs, it's thousands. So the ticks can, know, the population, there's no, there's no worrying of, uh, you know, the, the tick population decreasing, like there are for a lot of, in countries of people, like, wow, they, there's one tick makes a lot of ticks,


Monica White: And having been a, a wildlife biologist my entire career, I was in Colorado, the majority of my adulthood. Um, . There was only one part of Colorado where I had run into ticks a lot when I was younger in my career. And then there was a pretty good stretch where really didn't run into ticks until I got sick.

And then it's like they just came outta the woodwork. And I was hearing from long-term, you know, employees of um, , the US Forest Service where I worked that I, you know, I never saw a tick in 20 years, and now they're everywhere. And um, I know that's not very scientific, but you have people that are in the same

Mary Collins: Anecdotally things it adds I mean, if, 10 people are, you know, if you, the more people are saying something, there's, there's a, I don't, can't recall the phrase, but you know, there's something there, it's like, okay, there's something there because you wouldn't, uh, you know, just doesn't occur like that.

Well, um, well that's great. No, we really, um, happy to support you and just learn more about all of your efforts and, um, it's just so interesting cuz how, you know, This, you know, a horrible thing and your whole family being affected. And then, but then, you know, it changes the path of, of your life in, besides health-wise, but education-wise, I'm sure people you've met, um, you know, government advocacy, it's, uh, it's really, uh, it's great that like you could take that and then say, okay, I'm gonna, Help the next group that comes along and help.

They don't go through what I went through think too many people sit back, oh, well, you know, it's, um, they don't do anything. But it's so exciting that, or refreshing to say, okay, now I'm gonna, you were like, let's, let's do something to make this better.

Monica White: Absolutely

Mary Collins: good.

Monica White: and like Insect Shield has been, you know, supporting our efforts from the very beginning. Um, and, and just like to know that we have these resources to be able to share. and keep people protected is just huge. And, um, and, and moms, you know, especially moms, um, mothers against slime.

I'm, I'm a part of that organization as well now. And, um, just, you know, that conversation starter, just because you you have one thing doesn't mean you can't get another, or that there may not be risk from mom to child

Mary Collins: Right. Yes. That's a hold up. That's, yeah. That's interesting. Um,

Monica White: Whole nother podcast

Mary Collins: exactly. No, I, exactly. That went well. Um, well thank you so much for your time. Really appreciate hearing about what you're doing and, um, all the good you're doing in Colorado for the community and, and for the, you know, the nation too, cuz all the, the work hopefully spreads out.

And resources, more resources come to prevention. Cuz if you look at the number, there's more money coming in, but it's not that much money when you look at how money that's gone to other, you know, other ailments and just other diseases.

Monica White: not equivalent um, to other diseases, but, um, to at least see. Trend continue. Um, is hopeful.

Mary Collins: Yeah. Well, absolutely.

Monica White: you so much for

Mary Collins: you.

Really appreciate it. Okay.