Monica White, on her yearslong struggle with Lyme disease and her advocacy as founder of the Colorado Tick-Borne Disease Awareness Association
(Publication Date: 4.4.23)
Overview: In this episode of the We Are Chaffee: Looking Upstream podcast, host Adam Williams talks with Monica White, founder of the Colorado Tick-Borne Disease Awareness Association.
Monica enjoyed a career as a wildlife biologist for the U.S. Forest Service for a number of years, and then experienced a life-changing illness that took years just to get support for diagnosis, let alone treatment. It’s her path with Lyme disease, and that of her husband and their two children getting sick with it, as well, that inspired her to become an advocate in the field of tick-borne diseases.
In this conversation, Monica talks about the brutal shift, physically, mentally and emotionally, from an active, adventurous outdoor life to one of years long, ongoing isolation and grief, for her and her family.
She talks about why it was so extraordinarily difficult to get the medical community’s support in her diagnosis, and why Lyme disease continues to be such a challenging illness, in general, to get treatment for.
SHOW NOTES, LINKS, CREDITS & TRANSCRIPT
The We Are Chaffee: Looking Upstream podcast is a collaboration with the Chaffee County Departments of Public Health and Housing, and is supported by the Colorado Public Health & Environment: Office of Health Disparities.
Along with being distributed on popular podcast listening platforms (e.g. Spotify, Apple), Looking Upstream is broadcast weekly at 1 p.m. on Tuesdays, on KHEN 106.9 community radio in Salida, Colo., and can be listened to on-demand via khen.org.
Colorado Tick-Borne Disease Awareness Association
Website: coloradoticks.org
Facebook: facebook.com/ColoradoTicks
Instagram: instagram.com/coloradoticks
Documentary film: “The Quiet Epidemic”
Website: thequietepidemic.com
Facebook: facebook.com/TheQuietEpidemic
Instagram: instagram.com/thequietepidemic
We Are Chaffee
Website: wearechaffee.org
Facebook: facebook.com/WeAreChaffee
Instagram: instagram.com/wearechaffee
​
CREDITS
Looking Upstream Host, Producer & Photographer: Adam Williams
Looking Upstream Engineer & Producer: Jon Pray
We Are Chaffee Community Advocacy Coordinator: Lisa Martin
We Are Chaffee Graphic and Web Design: Heather Gorby
Director of Chaffee County Public Health and Environment: Andrea Carlstrom
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TRANSCRIPT
Note: Transcripts are produced using a transcription service. Although it is largely accurate, minor errors inevitably exist.
[Intro music, guitar instrumental]
Adam Williams: Welcome to We Are Chaffee: Looking Upstream, a conversational podcast of humanist, community, and wellbeing based in Chaffee County, Colorado. I'm Adam Williams. Today I'm talking with Monica White, founder of the Colorado Tick-Borne Disease Awareness Association.
Monica enjoyed a career as a wildlife biologist for the US Forest Service for a number of years. And then she experienced a life-changing illness that took years just to get support for diagnosis, let alone treatment. It's her path with Lyme disease, and that of her husband, and their two children getting sick with it as well, that inspired her to become an advocate in the field of tick-borne diseases.
In this conversation, Monica and I talk about the brutal shift physically, mentally, and emotionally from an active, adventurous outdoor life, to one of years long ongoing isolation and grief, for her and her family. We talk about why it was so extraordinarily difficult to get the medical community support in her diagnosis, and why Lyme disease in particular, continues to be such a challenging illness to get treatment for.
(01:12): Monica tells me it's been a controversial topic for 45 years. And the medical care system has yet to catch up to be properly informed and sufficiently proactive in its care. Now, I must admit that I am woefully unaware about Lyme disease and other tick-borne diseases. I was always told they were bad, and that you don't want a tick on you. But I never was educated on why, or even how to properly remove a tick once I found one. And I suspect having learned quite a bit from Monica now, it's because our population in general is quite unaware about all of this.
With that in mind, I ask Monica for the basics that we all ought to know for prevention of these diseases, and how to properly deal with a tick when we find one on ourselves or on our loved ones. Like Monica, I love time outdoors and I do get a lot of it, as I think many of you who listen to Looking Upstream probably do as well.
(02:04): After all, this podcast is based in the heart of amazing mountain living in Colorado. Being outdoors is essential to the lives that we love to live. So it seems worth noting just in case for anyone who might be afraid of what we're about to get into in this conversation, go ahead and listen.
Knowing that no one here is discouraging time in the woods, or stoking fears of ticks, or the outdoors, but Monica's story is an enlightening one. And through her resilience and empathy, she has found a purpose in sharing her story with us so we can be more informed while continuing to enjoy our mountain loving outdoor lives.
(02:39): As always, show notes and transcript from today's conversation are posted at wearechaffee.org. You can learn more there after listening. And if you are listening to this show on a podcast player like Apple or Spotify, and appreciate what you're hearing, you can rate and comment on the show on your player, and help us to spread the good of what we're doing here, which is learning and connecting through conversations.
The We Are Chaffee: Looking Upstream podcast as a collaboration with the Chaffee County Department of Public Health and the Chaffee Housing Authority. And it's supported by the Colorado Public Health and Environment Office of Health Disparities. Now, here is my conversation with Monica White.
Adam Williams (03:30): So Monica, you're the president and co-founder of the Colorado tick-borne Disease Awareness Association. And of course, that begs the question why did you start it? And I'm curious to know when.
Monica White (03:43): Well, I started in 2016. We established as a nonprofit. And the reason behind that is I had been very sick with chronic Lyme and multiple co-infections, tick-borne disease infections. And when we needed the resources and help, there just weren't any. So as soon as I was able to walk, and talk, and get around a little bit again, I had been completely debilitated for a number of years. I really, really felt strongly that our community and our state needed to have those resources available so that nobody would have to struggle the way we did to get to the care that we needed.
Adam Williams (04:31): Okay, and we are going to get into that story. I definitely want to hear more about what that experience has been for you. But I before we move away from the association and some of those basic elements of that work that you are doing in that advocacy, let's stick with that. And if there's something instructive here maybe for people from that angle, what is its mission? And how many cases are we talking about for Lyme disease, maybe tick-borne diseases? I know there are a number of others. What is some of that informational background that can help us set the stage here for that work you do?
Monica White (05:10): Yeah, the biggest part is awareness. I was a wildlife biologist my entire career. And yet I had no idea how debilitating, how sick a tick bike could make someone. Even with the educational background that I had as a wildlife biologist working for the US Forest Service my entire career. I just had no idea. So awareness that ticks are blood sucking parasites that can transmit a number of infections, even with a single bite, that can make you really sick.
They can be fatal or they can be life changing in the way of disability. Prevention is key. And without awareness you don't know how to prevent. Without prevention, you're at risk for a tick bite. And that risk has been growing as the decades have passed. There's more ticks in more places. Different ticks carry different diseases. Different diseases come with variable outcomes.
(06:22):
And just thinking about Lyme by itself, 500,000 acute, that means like new cases per year, annually, new cases of Lyme. And those are only the ones that are being identified and treated immediately. It doesn't account for the number of people that don't even realize they've been bitten by a tick, or get misdiagnosed or undiagnosed until they may acquire more of a chronic or debilitating illness.
So just with the distribution of ticks growing, the number of diseases for potential growing. And more human interaction in our natural environment, the risk is just higher and higher for everybody nationwide. And Colorado's not immune.
Adam Williams (07:18): Okay. I googled for those numbers prior to coming into this conversation. So because I found such a significant range in those numbers, I want to give you a chance to speak to that because you just said 500,000, and I saw that number. But I've also seen as low as 30,000 and all kinds of numbers in between. And I suspect that there are caveats on it.
There are details that are part of that. But what I don't want is for listeners to hear you then go on to Google themselves, see something that says, "Oh, no, it's only 30,000. She doesn't know what she's talking about." And I figure you are the person who is informed on this and might be able to speak to what is that range really showing us, and help us to understand what's credible or not.
Monica White (08:02): Absolutely. Some of those lower numbers are coming from previous CDC estimates, where they were basing those numbers on actual reported cases by the states. The problem with that is there's no consistency in how states report. So in states that are highly endemic, say New York or New Jersey, they have so many cases per year, that they don't even report a number of their cases.
For a state like Colorado, where Lyme is considered not endemic by the state, very few cases of Lyme even make it to the place of being investigated to be reported. So since there's no consistency in reporting nationwide, state by state, or at a national level, those numbers can fluctuate.
(09:03): And so the lower numbers that you're referring to are the numbers that were actual reported cases that had been investigated and then reported to the CDC. The CDC has revised how they are estimating those cases.
Now they're actually looking at hospital reports, and looking at the number of people that come in with a tick-borne illness, Lyme disease diagnosis, and that's where that close to 500,000 per year is coming from. People that are actually being diagnosed and treated with Lyme disease acutely. So over time, those estimates have changed.
Adam Williams (09:03): Okay.
Monica White (09:03): Yeah.
Adam Williams (09:52): Okay. Thanks for explaining that.
Monica White (09:54): You bet.
Adam Williams (09:55): I'm wondering about the prevalence of tick-borne diseases. Do they present higher risks than say other things like mosquitoes? And as a kid, of course, I was warned about Lyme and tick bites. And if you find a tick on you, you need to deal with it. And then it was sort of left in this mysterious space.
The same thing with mosquitoes and the idea of malaria, or I guess, what we've come to West Nile, and different things like that. I guess what is an accurate sort of perspective for the average person who enjoys being outdoors like I do, like probably many of the listeners around here do? Are we talking about ticks being much more prevalent than mosquitoes, or are they on say, bear encounters or rattlesnake bites? Or what is this in this whole scheme of when we go outdoors, what's the risk?
Monica White (10:50): When it comes to vector-borne diseases, I can speak to that for sure. Of all vector-borne diseases, tick-borne diseases are the highest. So we're looking at like 70-80% of all vector-borne disease cases are coming from ticks. And the majority of those cases are Lyme cases. So from a vector standpoint, ticks are very prevalent, and they are causing the most cases of human illness in the US.
Not to say that West Nile isn't a serious disease. Not to say that malaria is not a serious disease. But when it comes to human risk in the US, ticks are in every state carrying various diseases. And they make up that greater portion of human risk. Now compared to rattlesnakes and bears-
Adam Williams (11:48): Was that a weird collection I gave you?
Monica White (11:48): No, no, no, not at-
Adam Williams (11:48): I'm just thinking of all the things we encounter outdoors here.
Monica White (11:53): Yeah. No, I'm a wildlife biologist.
Adam Williams (11:54): At least here in the mountains.
Monica White (11:55): Yeah, that was fair. I've run into bears three times in my life as a wildlife biologist, so I have a lot more exposure. I've unfortunately, run into my more than fair share number of ticks in the outdoors. Again, I'm a biologist and had spent the majority of my career in the woods and in my childhood in the woods.
So I think it depends on the person with ticks, with bears, with rattlesnakes. And yeah, you can find them in your own backyard depending on where you live. And thing is, you can hear a rattlesnake coming, usually. A bear doesn't normally sneak up on you. A tick, you may never know you have on your body. And then weeks or months later, you're wondering why you're sick and you have no idea that you've actually been attacked.
Adam Williams (12:57):
I want to ask you about vector because I don't know what you mean by that.
Monica White (13:01): Okay, so vector is any biting insect, arthropod, mosquito, flea, fly, tick that can transmit a pathogen from the host that they have fed on to the next host that they feed on.
Adam Williams (13:22): Okay. Okay.
Monica White (13:24): Yeah.
Adam Williams (13:26): Well, let's get more into your personal story with this. We started off with you talking about why you started the association, and that you referred to a debilitating period and experience. And so, there's much more to this. In that mystery, I said when I was told as a kid, "Oh, you don't want to tick on you.
If you find one, take it off." But then there was no other information. And I don't know that anybody had any other information. All we knew was it's not a good thing. So what is it from a tick bite that led in your experience to such, really, a life-changing experience?
Monica White (14:07): Yeah, unfortunately, it's the same ignorance that you grew up with. Nobody wanted a tick on them. They were gross, they were icky. We checked for them. We did not remove them properly when I was a child. Maybe not when you were a child.
Adam Williams (14:24): I would guess not.
Monica White (14:25): Yeah. And with improper removal, you even increased your chance of that germ that the tick might be carrying, passing to you.
Adam Williams (14:34): Okay.
Monica White (14:35): So proper removal's really critical, and we can talk about that later too. But the biggest thing is I had no awareness. Even growing up where I did, on the East Coast, where Lyme and multiple other infections were very highly endemic, had no idea about the fact that a tick bite could make me sick, or that it could be a delayed illness, or an acute illness, and then go dormant, and then relapse.
And so when I initially got sick, I had been bitten about a year prior, just before getting pregnant with my second child here in Colorado. Pulled the tick off with my fingers in the shower, all bloody, let it go down the drain, didn't know what bit me, didn't give it a second thought. And my truly debilitating symptoms began after the birth of my second child. So right after he was born.
(15:37): He started having some health issues. I began having some health issues. And then our years long journey towards figuring out what was wrong with me and what was wrong with both of my children, and eventually what was wrong with my husband. It was like a seven and a half year quest, for lack of a better word, to figure out what was happening in our family, what was happening with my body, what was happening to my children, and my husband. And just not having that prior awareness, not having that education put me at such a handicap for getting to the right answer quickly.
Adam Williams (16:26): All four of you in your family of four have Lyme disease?
Monica White (16:29): We do.
Adam Williams (16:30): Which, for me, raises the question of, This is contagious? How does this happen?
Monica White (16:35): Yeah. We do know that Lyme and multiple other tick-borne illnesses can be transferred from mother to child through the placenta. There is unsettled beliefs about sexual transmission. The research is not there to back it yet. Although the pathogen can be found in both seminal fluids and vaginal fluids. But yet there hasn't been any research to confirm sexual transmission.
So for me, growing up on the East Coast, having multiple tick bites, and a couple of mysterious illnesses throughout my younger years, I was likely infected before I gave birth to both of my children. My husband's a wildland firefighter. So he had plenty of time and exposure as a child through travel and work to have had his own exposure. And with Lyme being as common as it is in the US, I think more people probably have Lymes than they're even aware of.
Adam Williams (17:52): Okay. Because it can be dormant.
Monica White (17:54): And immune systems function in different ways. I do believe my initial infection was much younger. And when my immune system was under stress is when the bacteria were able to take over. Bacteria, parasites, and viruses.
Adam Williams (18:13): You had mentioned a particular tick bite that had happened a year prior to some things. And when you said that, I thought... Because at least for me, I would have no recollection of that. Which I think makes the mystery of this that much more challenging is, you don't necessarily know when or how it came about. So how do you even start looking into the issues?
Monica White (18:36): Exactly.
Adam Williams (18:36): Comes to my mind.
Monica White (18:37): Yeah, exactly. And especially with the ticks that carry Lyme, they're really tiny and they're hard to see. And they can attach, and feed, and be gone before you even know you've been bit. And from some of the statistics I've seen, it's less than 50% of people that develop Lyme disease actually recall a tick bite at all.
Adam Williams (19:04): Okay.
Monica White (19:04): Yeah.
Adam Williams (19:06): Yeah. I mean, I would believe that. I would believe if the number was even much lower.
Monica White (19:11): And it may be. Again, the stats are variable based on the sources that you look at. But the doctors that are treating a lot of Lyme patients, the ones that do that as a regular thing, they're the specialists. They're the ones that are much more keen to the signs and symptoms of somebody with Lyme. They're much more in touch with the potential treatments for Lyme and the other co-infections that usually come along with someone with really debilitating chronic illness. It's usually more than Lyme. It's usually more than one pathogen.
Adam Williams (19:45): Okay.
Monica White (19:46): Yeah.
Adam Williams (19:47): Let's talk about your life prior to all of this. What were the things that you enjoyed doing outdoors? And you had mentioned being a wildlife biologist. What kind of work were you doing? And I'll guess that you must have enjoyed it. You must have enjoyed being outdoors in maybe all kinds of ways.
Monica White (20:03): Yeah.
Adam Williams (20:04): What was that energetic, joyful sort of version of life prior to this life changing pivotal moment?
Monica White (20:10): Yeah. I loved my life. Prior to this illness, I spent my life in the outdoors. I mean, from the time I was tiny, tiny. And then I made it my career. I liked to be on horseback. I liked to hike, and I liked to camp, and I like to fish, and I love to ski, and snowshoe, and go to music festivals, and just be outside any chance I got.
As a wildlife biologist, I had opportunities to do everything from trapping elk and big horn sheep, to surveying for goshawk nests, and monitoring boreal toads. I really, really enjoyed my life. I got to do a lot of it on horseback. I was able to be a wildland firefighter throughout my career, from the very beginning, and get to see new places, and work with a team of people, and a whole different environment than regular workplace.
(21:22): I had very, very full and active life. I used to run. I ran from Mount Hood to the coast with a relay team a couple years in a row. And to go from that level of activity to needing help getting from bed to bathroom, was a very hard transition. To give up my career with something that I identified as a person, as a biologist to give that up. It was a complete loss. And then to not be the mom that I had planned to be because I was very sick when my children were at a really young age. So life prior was full, and active, and fun, and adventurous. And life after was very lonely and isolating.
Adam Williams (22:28): I would imagine there is a tremendous amount of grief and a process of grieving that probably still is continuing.
Monica White (22:39): Yeah. With these diseases, it's like being on a rollercoaster. So you have your highs and where you feel like you're getting back to some kind of a normal function. At least in my experience, it's not the same for all patients. And when you're in those highs, you think you're getting some semblance of who you were back. And it's exciting, and it keeps you motivated.
And it keeps you thinking, "Maybe I'll apply for that job that opened up here in Salida." And then just as fast as the highs come, the lows can come, where your husband has to walk you into a building. You can't drive anymore. Sometimes you can't even gather your thoughts enough to get a complete sentence out. So keeping that hope going, even when you're facing the lows, has been a struggle.
Adam Williams (23:51): I would imagine. The impact of that, which we are talking about years ongoing. It affects not only your work, which you've described a little bit here, but socially as well. Does that make it difficult to function in with any sort of scheduling or predictability?
Monica White (24:13): Absolutely. Oh, it's hard. I've made a lot of friends that I wouldn't have made otherwise. But I lost a lot of friends that I had previous as well. When you can't participate in the activities that you were used to participating in with friendships. And believe me, I'm super happy that my friends are not dealing with this. I wouldn't wish this on anyone.
But I can't plan a mountain bike trip or a camping trip with a friend. Even at some points, meeting for breakfast was too much. I would have to cancel. The same with my children birthday parties, outings, adventures. That kind of predictability is just because the disease is so unpredictable. And when it hits and how it hits, there's a lot of loss there. Isolating loss. Yeah.
Adam Williams (25:16): I imagine it becomes difficult for friends to know how to comfort, how to help, how to understand, and ultimately, maybe stop asking for breakfast.
Monica White (25:32): Yep. There are some friends. And I really do think it's... Different people have different capabilities. And some of my friends have hung in there and they'll do whatever it is I'm capable of doing. Even if it's me taking a nap while they're sitting in the living room.
And I get it, when I've had to cancel numerous times or just haven't been able to make it, that gets hard to keep asking. And I do know, not everybody is capable of being there when things are really difficult for someone in the physical condition that I've been over the years. Hard for, even my family at times.
Adam Williams (26:26): How has it been for them? Because all four of you are in different experiences. I would think in a sense, different stages in life. Your kids, they've grown up with this it sounds like, well, they're whole lives. And I would imagine that has affected their social development and connections with other kids. And has it affected their attendance in school or their dreams? I mean, this is all deep and heavy stuff that... Wow.
I mean, that's why I want, and I appreciate your vulnerability and willingness to share because I think that's where the heart of our learning about this lies, is in the human who's expressing this. So I do thank you for what you're sharing. And you can wave off any question as we continue as needed. But with your kids, with your husband, to the extent you feel comfortable sharing anything from their stories, since they are not here to speak for themselves, what is the impact overall as a family and what you've witnessed as a mother and wife in the family?
Monica White (27:37): Yeah, that's a really hard one because we are not the only family like this. Not even in our community. We are not the only family like this. And I'm thinking to your question about the fact that we were at all different stages of our lives when this disease hit, or at least when we found out what was happening. I had already had my childhood and my college years, my school years, my career.
So there was a lot of loss there for something that I had. For my children, there was just continual loss every year. And they didn't know what was normal because they hadn't grown up yet. So as they got older, they did notice the things they weren't able to do that their friends were able to do. Whether that was what they were eating, or the medications they were taking, or the way that they would feel if they exerted themselves physically.
The fallout, you know that saying, you play, you pay. That was almost with everything in our lives. And we didn't stop playing. I mean, we played as much as we possibly could, but the pay always caught up.
(29:07): And so for all of us as individuals, I was the sickest, which is what got us to the diagnosis. My husband and daughter responded the best to treatment, so they were the first to get their lives and brains back on track. Not to say that my daughter didn't deal with relapse as well. She did. She does. But she's made the most of her life and is doing beautifully now in nursing school. But always has to keep her health at the forefront so that she can maintain and can do the things that she wants to do. My son and I have been the ones that have been harder to treat, relapsed more often. And the physical and mental toll has been incredibly difficult. Not a lot of people know, I think, that Lyme and many of the other tick-borne diseases, they can go anywhere in your body. The germs can. Bones, organs, brain, blood vessels, it can affect skin.
(30:33): I mean, there isn't a part of the body that's immune to the bugs. And it's highly individual how these diseases affect different people. And mental health is a big part of that. For some people, the only manifestation of these diseases is through their mental health. Either cognitive, psychiatric, neuro-immune, and those impacts are, I think, the most difficult to deal with.
Adam Williams (31:08): I would imagine, because there can be so many factors as to why any of us have the mental and emotional states that we do. So to have it come from something like this, seems like it might be even harder to pinpoint and work with. Wow. Well, I want to ask you about, I guess, medical care overall.
Because I know that part of this story is that it took several years before you could even get a diagnosis, before you could get help in understanding it, in caring for yourselves, caring for your family. What has that journey been through all of it, to the place where you are with treatment, and frequent treatments?
Monica White (31:55): Brutal is the word that comes to mind, without incredibly strong self-advocacy. I don't think a lot of patients dealing with this disease even make it to any semblance of care. Because we lived in Colorado, I was refused testing for Lyme disease for three and a half years. Once my symptoms started to really debilitate and manifest to the point where friends, and even acquaintances, and a complete stranger reached out and said, "Have you been tested for Lyme?"
When I looked that information up on the reputable sources, the CDC website at the time, I talked myself out of thinking that I needed to be tested for Lyme, because I didn't have Bell's palsy, I didn't have a cardiac problem, and I didn't have a swollen knee. And that's all that the webpage was talking about at that time. This was back in, well, 2007, '08, '09.
(33:11): So when I was denied the chance to get tested here, I didn't fight that hard to start. But as the disease progressed and I became more and more disabled, I had more outside influences saying, "You need to be tested for Lyme." And one of those was a nurse advocate through my insurance company. And she heavily requested to my primary care at the time to just sign the order. Just sign the order, let me be tested.
I was sick, I was non-functional. They couldn't find anything else wrong with me. I'd been all over the country, including major medical centers all over the country. When my test came back positive, it was both a relief and a really, really scary place because if nobody would test me, who was going to treat me? What was I supposed to do next?
Adam Williams (34:19): I imagine that was an emotional ride as well, that, not to put a word or emotion on you, but what came to my mind there was anger, because of the years it took of trying to understand this thing. So I would understand relief, okay, we have an answer. And wow, okay, now here's this road.
Monica White (34:39): Yeah. Anger's funny because in me... Thank goodness I have it. It's my motivator. If I didn't have the anger, I don't think I would've pushed just hard for an answer. I don't know if I would've been a worthy advocate for my children if I didn't have that driving me.
Adam Williams (35:08): I was wondering about your resilience in this. And is it your children? Because we talk about the mental health aspects as well. When you have your children to advocate for, to fight for, to care for, how has that impacted your fight in this versus if it was just you alone? Or even you and just your husband, and how you think that might have influenced this now a mission in your life?
Monica White (35:38): Yeah, that's a hard one because I know so many people that are fighting this fight alone. And I admire them so much. It was really bad. If I had not had my children, my husband in my life, I don't know if I would've fought as hard as I did or would continue to keep fighting as hard as I do. My children were really huge motivator. I wanted them to have happy well lives. I wanted them to have the access to care, to be able to do the things they wanted to do because school had already been impacted, friends had already been impacted, their activities had already been impacted.
I wanted them to be able to look forward to a future without pain, future without sickness, a future of opportunities. And so my anger, my passion has driven me from the very beginning and continues to drive me now. And is why I put myself out there to help others because not everybody that is fighting this battle has a support system. And I can't express more how important a support system is to get through this.
Adam Williams (37:08): I admire so much people who have something unexpected happen in their lives. Maybe that's a disease, maybe it's a car wreck, it's whatever happens. Maybe it's not even to them directly, but rather family members. And then they go forward with a new mission and purpose in life. And the way they are able to be resilient and find optimism in whatever form that might look like, because it is there when you are fighting for other people.
So I admire that so much in what you were doing. I have talked about on this podcast, there have been challenges for me with mental health, emotional wellbeing. I'm also a father, a husband. These are things that I've brought up from time to time.
(37:51): So I have this empathy for where you are. And empathy was the word that came to mind for me about your experience. It's how you are feeling about the people you are helping through your association. But it's also that person, that woman at the insurance company who fought so hard for you to get that test in a system that, in my words anyway, seems to have lacked empathy. I don't know if you want to share that experience and if you agree with that.
Monica White (38:19): I think there's a lot of fear which prevents people from exhibiting empathy if they have it. The topic of Lyme has been controversial one for over 45 years. So you have this disease that's debilitating people. People sometimes take 40 years to find out that they've been sick their entire lives because of Lyme disease. And the medical system has not caught up within a couple of years.
We had a better handle on COVID than what has been done for people with Lyme in 45 years. And a lot of the fallout is the same. A lot of these long haul COVID people are experiencing similar conditions as people with chronic Lyme and other diseases.
(39:23): What I've seen in the medical community is fear and lack of awareness. There are doctors that have put themselves out there for patients working with imperfect science, trying to help people have their best quality of life possible without a treatment that's 100% guaranteed to help anybody. There's no one single treatment that can guarantee that an individual with Lyme is going to be well, if caught early and acutely... And this is where the numbers vary as well. Anywhere from 40 to 80% of people might get well if you get caught early, get treated properly.
Adam Williams (40:11): What is early compared to what your experience was of waiting for years?
Monica White (40:15): Yeah, within weeks.
Adam Williams (40:16): Oh, okay. Well, that is really quick.
Monica White (40:18): Yeah. Within weeks, or at least within the first couple of months. Getting adequate treatment, which is, depending on the source, anywhere from 14 to 28 days of doxycycline, a single antibiotic. A good portion of people respond, but the portion of people that do not respond, those numbers are varied. It can vary from 20% to 60%.
Adam Williams (40:18): Okay.
Monica White (40:50): So there's a lot of misunderstanding, a lot of miseducation, or lack of education. And a lot of fear to treat a patient longer or with something different if the symptoms do not go away or if they relapse after initial treatment. That's for the people that know they have Lyme. Like I said, like 50% of people that are getting line don't even know they've been bitten.
By the time they get to a doctor, they've passed that window of early treatment. And diagnosis is not reliable. So you've got a frontline test that is 50/50 reliability for being sensitive. And it depends on when you test, because the tests are based on antibody response. And your body response takes time. So if you go in right after a tick bite, you may test negative. And you may not get a second test later down the road when antibodies develop.
(41:56): Or you may be a human that doesn't develop the antibodies very well, and that stealth pathogen just hides out in the body until at a later date. It causes problems that are complex. They can mimic other diseases. And it just makes diagnosis so much harder at a later date. And the patient community is in desperate need of accurate diagnostics and doctors willing to treat early, and long enough, and with the right combination of medicines to eradicate. And when that doesn't happen, when seven and a half years go by, eradication of disease is very difficult.
Adam Williams (42:45): Okay. Sticking with the idea here of empathy, what I'm thinking is that we are also talking about medical conditions that are not obvious. So whether that's to friends to people in work situations, just in whatever social setting. But I imagine it also translates to those in the medical field as well, that we as people generally, if we can't see it, it becomes a little bit more difficult to buy in with our empathy.
Unless we really have a practice of empathy and entrusting and believing what a person is telling us they're feeling, they're thinking. And for whatever all the reasons are, I think we struggle as a collection of people, of humans to do that. And I wonder how much that has impacted as well the experience within the hospitals and insurance companies, other than the woman you highlighted. And that to me is an amazing, maybe exception.
Monica White (43:41): She saved my life. She absolutely saved my life. She listened to what I was saying. She put the whole package together because prior to that, I was seeing somebody from my head, somebody from my stomach, somebody from my joints, somebody from my hormones. I was all over the place and nobody was putting the whole package together. She was hearing all of it, and was shocked and amazed that I had not yet been tested for Lyme disease. So unfortunately, Lyme, like many other diseases of immune dysfunction or infection, it can sometimes be invisible. And unfortunately, there is disparity in the health system.
(44:42): When a woman comes in and says, I'm not feeling right. My stomach's upset. I can't sleep." The immediate response is anti-anxiety and anti-depression medication. Instead of looking at, well, this person was perfectly healthy like three weeks ago. And now all of a sudden she's depressed, and anxious, and can't sleep, and has headaches, and her stomach's upset.
That's what a number of women... And statistically wise, more women do acquire chronic Lyme or develop chronic Lyme than men. And we're being undertreated, we're not being taken seriously. And it is, I think, a lack of empathy for actually listening to what's going on. Now, if my face had been drooping at the time or my knee had been swollen at the time, I think maybe I would've gotten better investigation. But that wasn't the case. And it isn't the case for more, and more, and more patients that I've been interacting with.
Adam Williams (45:56): So you started this association, this is advocacy, I assume that involves education of... Well, tell me how do you go about it? I could say it was education of everyone. But I assume you have a more thoughtful approach than just trying to get everyone to listen all at once. How do you go about sharing this information? Are you able to write and publish? Are you able to go and speak, and present at appropriate conferences or in the medical community? How are you approaching it?
Monica White (46:30): I have approached it from every angle possible that I'm capable of doing. Being welcomed is part of the issue. It's not a fun topic, it's one like, until you know what you don't know, you don't know. And so when I've had the opportunity to present even with my own peers as a wildlife biologist, I made it to every federal agency within a two-hour driving distance of Salida for employee education, tick by safety and prevention. I mean, prevention is key. You got to keep the ticks from biting you.
Adam Williams (47:17): How do you do that?
Monica White (47:20): There are a number of tools available. Permethrin treated clothing kills ticks on contact. A number of repellants to wear on skin, some natural based, some deep based that are effective against ticks. Doing regular tick checks when you are spending time in the outdoors. And especially if you travel to a place that you're not familiar with, getting to know what the risks are in the other states that you're going to visit too, and what seasons are higher risk.
Because ticks are active year round in different places around the country. And then if you go globally, even more so. Having that awareness, knowing the tools you have to keep a tick from biting you, which are the repellants, long sleeve clothing, long pants, pants tucked into socks, or wearing gators, tick checks, and showers after you come indoors. And having a partner tick check you because there are places that you just cannot see.
(48:26): Making sure that you're doing that for your children, and your pets, or your livestock, if you're a horse person. It should just become regular habit. It's not me saying don't go to the woods. It's my favorite place to be in, and I continue to go. But doing it with a different level of awareness.
You clean up your trash when you're in bear country. You don't leave it sitting out around a campfire. You look under a log or a rock before you sit down in rattlesnake country. Well, it's tick country everywhere. And so just being prepared for that, being aware of the kind of habitats they like to be in. And that varies depending on where you are. Really, awareness. Yeah.
Adam Williams (49:17): I think that's really important what you pointed out is that this is not about fear. It's not about take my story and now be afraid of all these amazing things that you also enjoy. You understand the enjoyment that we get. It's simply about education.
Monica White (49:17): Yeah.
Adam Williams (49:34): And sharing your very human story and experience and of your family. That's really puts us into perspective and removes mystery that I talked about from when I was a child, "Oh, don't have a tick on you." "Okay, what's next?" "Well, I don't know. Just don't do it." And so this brings so much to the story for people I hope. And you said it's not a fun topic. And I suppose that's true that it's not as sensational or entertaining as some things in that way.
But I think that's also... If we go back to the empathy for example, it might be that fear as well. We tend to turn away from what we are afraid of, and we don't need one more thing to be afraid of, and so on. But I think the depth of the experience of yourself and your family is just to be heard and taken into account.
Monica White (50:28): Yeah, if I had known what I wish I had known at a much earlier date, our lives would be very different. And the lives of a lot of people I know would be very, very different. And just making sure that people have the tools, and the knowledge, and the resources to do their very best to protect themselves while they're enjoying the outdoors, while they're visiting family in Nantucket. Knowing how to take care of yourself so that you can continue to enjoy all those things in the external world, and also have quality of life with your family. Yeah, it's just so important.
Adam Williams (51:13): You have shared some practical advice in terms of prevention. And if there are a few more tidbits of kind of instruction here, I think this is an excellent time and venue to be able to share this. For example, I'm thinking, what should I do when I find a tick on my son or myself? How do we remove that properly? Because you and I clearly didn't learn that when we were young, that knowledge wasn't known or shared.
Monica White (51:40): Yeah, the knowledge known back then was they call them wives' tales now. Either using a match to get the tick to back out, or putting Vaseline, or gasoline, or alcohol, or nail polish on the tick. Those are all very bad ideas. All it does is okay, stimulate the tick to regurgitate whatever they're carrying directly into your bloodstream. So the less agitation, the less you mess with a tick, the better.
The sooner you find it, the sooner you remove it, the better. And when removing it, you're going to want to use fine nose tweezers, get as close to the mouth parts of the tick. Even if you're pulling up a little skin with it, and do it in one smooth fluid motion so you're not crushing the body of the tick, you're not twisting the tick, you're not doing anything to make that tick push anymore of what it's carrying into you. And then save the tick.
(52:50): There are places that you can send a tick for testing. Keep in mind that even if the tick that bit you that you know you've had isn't carrying anything, you could have been bitten by another tick you hadn't seen. Or even if the tick is carrying something, it may not have transmitted to you, but it gives you a starting point with your medical providers to say, "Hey, I just pulled off what we identified as a dog tick, or a Rocky Mountain Wood tick.
And that kind of narrows down some of the diseases that you may be concerned about. Or if you pull off a blacklegged tick, that would give you a whole slew of other diseases you may want to consider, especially if the tick is found to be infected.
Adam Williams (53:43): Okay.
Monica White (53:43): So, different things to do.
Adam Williams (53:45): With our short time we have left, is there a medium length to short length answer to this question of how do we know when it's reasonable to seek medical care, versus just, "Okay, I got it off of me. I'm good to go." Because that window you talked about is pretty short. You might not have any symptoms show up in the next few weeks. How do we know when that's reasonable to go pay a doctor's visit bill or go wherever we need to go every time we get a tick?
Monica White (54:16): I would say anytime you have a question or a concern about a tick bite, the sooner you get into a medical professional the better. Because not only will it document the bite, some diseases can be transmitted in as little as 15 minutes. So if the tick has been on you for any period of time, you could be at risk.
Other diseases, if you don't start treating within days of infection, like Rocky Mountain Spotted Fever, you can lose limbs or lives. So different diseases come with different risk levels and different time periods for getting treated properly. It depends on the tick, it depends on the disease, and the time. And because it's so variable, I recommend anybody with a tick bite at a minimum document with your physician, and then talk about what your options are.
Adam Williams (55:17): Okay. Okay. Thank you. I want to mention in the short time we have left that there is a documentary called The Quiet Epidemic that came out last year. And on the website for your association, which I'm going to include a link for that in the show notes. I'm going to include a link for The Quiet Epidemic. This documentary, it's going to be touring around Colorado, right?
Monica White (55:41): It is, yes.
Adam Williams (55:42): Okay. There will be links there for that. I've watched the trailer, it looks to me like they've done a really good job of bringing humanity to this not fun kind of thing to talk about. As have you. I appreciate so much, again, the vulnerability, and what you have shared, and what your experience is that you are willing to make open to everyone to understand as part of the education of this. So thank you so much, Monica, for sharing your story.
Monica White (56:06): Oh, thank you, Adam, for letting me tell it.
Adam Williams (56:08): All right, that was my conversation with Monica White, founder of the Colorado Tick-borne Disease Awareness Association. If what Monica shared here today sparked curiosity for you, you can learn more in this episode. Show notes at wearechaffee.org. If you have comments or know someone I should consider talking with on the podcast, you can email us at info@wearechaffee.org.
We invite you to rate and review the We Are Chaffee: Looking Upstream podcast on Apple Podcast, Spotify, or whatever platform you use with that functionality. We also invite you to share the Looking Upstream podcast with others on your social media pages and by word of mouth. Help us to grow the good.
(56:52): Once again, I'm Adam Williams, host and photographer, Jon Pray, engineer and producer. Thank you to KHEN 106.9 FM community radio, where we recorded today's conversation in Salida, Colorado. To Heather Gorby for graphic and web design. To Andrea Carlstrom, director of Chaffee County Public Health and Environment. And to Lisa Martin, community advocacy coordinator for the We Are Chaffee Storytelling Initiative.
The We Are Chaffee: Looking Upstream podcast is a collaboration with the Chaffee County Department of Public Health and the Chaffee Housing Authority, and it's supported by the Colorado Public Health and Environment Office of Health Disparities.
You can learn more about the Looking Upstream podcast, and related Storytelling Initiatives at wearechaffee.org, and on Instagram, and Facebook @WeAreChaffee. Lastly, thank you for listening. And remember, be you. Share stories.