Dorothy Leland on Lyme Disease Advocacy and Awareness
In this interview, we sit down with Dorothy Leland, President of lymedisease.org and author of "When Your Child Has Lyme Disease." Throughout the conversation, Dorothy shares her background and journey in the Lyme disease community, including her daughter's struggle with Lyme disease and their journey to a proper diagnosis. She discusses her passion for patient advocacy and her involvement with lymedisease.org, emphasizing the crucial need for better resources and information for those impacted by Lyme disease.
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Transcript of the Interview
Mary Collins: Hi, this is Mary Collins with Insect Shield and I am here with Dorothy Leland, who is the president of lymedisease.org, and the author of When Your Child Has Lyme Disease. Welcome, Dorothy.
Dorothy Leland: Thank.
Mary Collins: Okay. Basically, we, lymedisease.org is a great partner with Insect Shield. You promote our product, we have you as a corporate partner. We think you all do great work. But we'd love to hear more about the values of, the mission of lymedisease.org, what you all do. Cause it's a bit different.
The other Lyme disease groups out there. But before we get to that, I would just love some background on you and how you ended up getting involved in the Lyme disease community. And let you give that background please.
Dorothy Leland: Okay like a lot of people in the Lyme community, I was recruited by a tick and, but it wasn't a tick that was on me, it was apparently on my daughter. So we never saw it on our our daughter. So we didn't know that my daughter, this was back in oh oh five, she suddenly, practically overnight became quite impaired.
She was, she couldn't walk. She was, everything hurt her. Her body completely hurt. And her ankle hurt and her necks hurt and her legs hurt and we finally had to get a wheelchair just to get her any place just to even get her to the doctor. And the doctors couldn't figure out what it was.
And somebody told me, one of my neighbors said have you ever checked for Lyme disease? Which I had only been peripherally aware of that as a thing. And eventually it we asked doctors of that and they were like, oh no, that's not Lyme disease. It's not Lyme disease.
But they couldn't find out what was wrong. And which unfortunately happens to a lot of people, if the doctors can't find out something that's wrong, the determination is there's nothing wrong . And so obviously, so this 13 year old girl who was in pain all the time and couldn't play soccer and climb trees and do all of those things that she wanted to do they said, oh she was faking it.
And when you're in the middle of that, that's just what, that's crazy. What is this? And it was a long involved story, but eventually we found out about the Lyme community. This was back in 2005. Facebook wasn't a thing yet. Twitter wasn't a thing yet. But there were some online, there were some online chat groups and things like that, and it turned out it was like this whole other world that wasn't it was almost like this underground thing in there were certain doctors that could help you and certain treatments you might take, and eventually we got that way and we, she did get diagnosed with Lyme disease and Bartonella. And Babesia.
Mary Collins: And how long did it take for you to get the diagnosis?
Dorothy Leland: To get diagnosed? It was it was about nine months, which is really in the Lyme world isn't very long. There's people that go three or four years or even longer. And, but it was anyway so she we found out that it was Lyme disease and we just got on this alternative universe. And she's, she did a lot of different treatments and and eventually she got better and she's 31 years old now, actually. Maybe she's 32 and she was, she basically lost her teenage years in in, in many ways. But she has recovered and gone on to live a good life.
And I got at about the same time that when I was in of all of that, I was like, as soon as I get outta here, I'm gonna change this. I'm gonna do something to change this. And I think some people feel that same way, that it's. That they feel like, they feel so, so abused by the system and they wanna fix it.
And so that's where Lyme advocacy comes from. And it is either people that have been sick themselves, or people that have had a close family member, friend, partner, somebody that.
Mary Collins: Oops.
Dorothy Leland: And that's the spark that says you wanna, you wanna try to change things. And lymedisease.org has been a patient advocacy organization for more than 30 years. It's gone through a couple of different name changes. At the time that I first came across it, it was called the California Lyme Disease Association, and they, as an organization were very helpful to me.
They had an online group and I, there was a lady that I used to talk to on the phone that steered me towards places. They gave me resources and They, they published a magazine called The Lyme Times, which had useful information. And so I gravitated towards them when I got to a point where things were better and I wanted to try to fix this.
And so I got involved with that. One of the things that really struck me when I was just in the worst of all this was that there. Much information, easily available, and even the group that I'm now president of had a website, but it didn't have very much information on it, and the groups didn't have much information. That aspect of social media hadn't come to fruition yet.
And I wanted. To have a place where somebody could go and get information and and so when I started working with the organization, I remember talking with Lorraine Johnson, who is the CEO and said I wanted to. I wanted there to be a news hub. I wanted people to have a place that they could go.
And that was when blogging was a new thing. It was like and the Huffington Post had just started and they had all of these things called blogs. It was like what if we do a blog? And so we did and I would, a blog called, touched by Lyme. And Lorraine would call, write a blog called Lyme Policy Walk.
And then eventually we started getting guest blogs from other people and we would do news items that came from, maybe the Washington Post has a story about Lyme disease. We. We would have something about that. And so there was a place that you could go and you could find information about Lyme disease.
And so that in terms of what I had done was what that was my vision.
Mary Collins: It's come to fruition. Yeah.
Dorothy Leland: It really has. Now, there's a lot of other sources of information now and that's good but partly it, there's so much information. When I was looking for stuff, there wasn't anything. And now you go and it's This waterfall stuff that falls on you and you've gotta try to figure it out.
So I view one of the things that we do is we curate news that we say, okay, here's something that we wanna bring to your attention and here's something else that we wanna bring to your attention and have it. So just the editor of a newspaper. Says, okay, we'll put this on the first page and we'll do this on the second page.
Decide you choose, because otherwise you just get dumped. It's just an information dump and nobody can figure out what they need.
Mary Collins: And it seems like there's, oh, sorry, go. No, I was saying there's just, and there seems like with Lyme disease too, there's so many diff, some things work for some people and some things don't work for other people. So there's someone say, Hey, this is this new treatment. It worked. It's I'm, I'm so much better.
And then someone may try it and it doesn't work. So you have to be sensitive to the information that you give out as well.
Dorothy Leland: Absolutely. And we can't tell somebody we're not their doctors and we can't say, this is a treatment you should do, but we can provide information. We can provide information. And so people, I've often said, you know that a lot of. Diseases. You get 'em and you go to the doctor and the doctor says, here, take this and you're done.
But here you have to like, go to graduate school. the equivalent of going to graduate school. You have to read all kinds of things and keep up. Keep up with them to know what to do. One of the, I for many years, I was the leader of a support group in Sacramento.
I don't do that now because I do other things, but that I did that for about eight years and that was very educational to me because I talked to so many people in so many different situations. And I can remember a number of times somebody would say, okay, your daughter, Was sick and now she's better.
Give me a list of everything that she did and I'll go and do those. , everything. She took everything, whatever. And it's it doesn't work that way. It doesn't work that way. You could take a list of everything that we did. For starters, some of the things that we didn't work. , it's a process of, focusing on what ultimately worked.
And so everybody is different. There can be, it's whatever your own, what you started out with genetically and what you were exposed to and what co-infections you have, and were you exposed to? Chemicals, toxic chemicals. There's so many things that can fact. There are people that are in the same family that have gotten bitten by ticks and have gotten sick.
They've been more than nude care to know everybody. The people that I've met, everybody in the family has Lyme disease. They all go to the same doctor, and they don't necessarily all have the same treatment because. All of those things that I was saying, that just there, there are different factors and it can affect people so differently.
It's that, particularly just thinking about children. For some children it's that their knees hurt for other children, it's that they have trouble learning how to read.
And that can both be caused by Tickborne disease. And so it can behavioral problems can, can be triggered by, things that come from tickborne disease.
And so it's not it's in no way a one size fits
Mary Collins: right? Yeah. Okay. . No, it's it. Cause I've been just, it's, some of the stories are just heartbreaking and I can only imagine and I don't know, but like, How many people to are out there? Or have, are not diagnosed and are going through. And, I'm sure that like mentally, the psychological, outcomes and feelings of, not being listened to or being so you know, what you're feeling is not true because we don't see anything wrong with you.
You look great. I've heard that a lot. People saying everyone says I look great on the outside but my insides are hurting. So that part of it has to just be really hard to go through. People that maybe don't have, a mother like you, that's we're gonna fight this. What's happening here?
Let's together as a family, like we're gonna get, get this sorted out. And then even, I guess then speaking on that side, but then, Going to the doctors and doctors saying this doesn't exist. Or insurance saying We don't cover this. The expense for some people just has to be, astronomical to, to manage that.
So is that, I think that's something you all work on too, is how do we get more on that back end on the logistical side, like to go to a doctor that. Is gonna, is a Lyme literate doctor and that insurances are gonna cover is that something you all work with as well to try to get those communities on board to supporting people?
Dorothy Leland: Well, you know, um, One of the things that, that lymedisease.org does is it's eventually folded into the MyLyme Data Pro program. But even before we started that
Mary Collins: But you have to, which can. You need to tell us about that too, cause we didn't cover that yet.
Dorothy Leland: Okay. But I was gonna say we do surveys. One of the things that we do is that we do surveys. Started with patient surveys, but one of the things that this year is we did a doctor survey and it was a survey of doctors who treat long-term Lyme disease.
There's not very many of them. in the country and the doctors, we ask the doctors what stands in the way of their. Trying to help people have Lyme disease and it's there's a long list, but one of the things is that there are just so few doctors that have a. Experience and the know-how to even recognize that it's a tickborne infection and what to do about it.
That even, when we lived in Northern California, and so when my daughter got sick in oh five and we eventually started looking for Lyme doctors, we were about two hours away from San Francisco and there were a number. In the Bay Area in San Francisco, but there are all parts of the country where there isn't anybody in the whole state.
And while we were in that doctor's office in the San Francisco Bay area, Anytime you went, you'd strike up a conversation with somebody in the waiting room and the, oh, they had gotten that, the taxi had brought them from the airport to their doctor's appointment, and they had flown from Georgia.
Or Singapore, or, we met people from all over the world in our doctor's office waiting room. And so it really you had to wait. You had to pay out of pocket. You had to, and insurance has changed a lot in just the nature of insurance has changed a lot in the last, 15 years.
And so at the time there were some things. Like the doctor's appointments weren't covered by our personal insurance, but some of the testing was, or some of the treatments were, but it was a whole and that was, we were lucky. There were a lot of people who didn't even have that, and it's just, and that is getting.
As I say, insurance is really is really changing a lot and things that used to be covered by insurance aren't anymore. And it's just it's, you just, you help anybody in that situation needs help on a lot of different levels, and partly they need the doctor that's, paying attention to them and recognize what's wrong with them and can, and has some idea of how to fix it.
and when those are very rare. And then there are insurance challenges and then there are. There's just a lot more you, I'm, you mentioned that I wrote a book When Your Child has Lyme Disease. I actually co-wrote that with somebody who's a Lyme literate psychotherapist named Sandy Berenbaum, and she on the East coast and I was on the West Coast.
And we were on the phone and the computer and everything, and we wrote this book together, but one of the things that we were trying to deal with was what sort of, how it impacted the family and the family dynamics and what hap happens when you have a sick child and, but then there's all this other stuff, there's all this.
This other stuff on top of it. But anyway I'm drifting off
Mary Collins: No, but I'm now is, that's thing. Is there a test? Because this is where I'm com Like is there a test that, I know now cause it's like IGeneXienics, is that the company that does the testing? Now, is there IGeneXienic, is there a test that is definitive that? Because I know that's one thing I read.
Like sometimes people get or they're or the test in the beginning doesn't show up, but maybe three months later like that's gotta be such a struggle too. If you don't have a test or or it's two years later you test positive, but you knew you got bit two years ago and that's when you started feeling poorly.
So what's the, with the testing?
Dorothy Leland: The the testing there's a lot of there's a lot of things coming down the pipeline for testing, but they're not there yet. And it's just testing has been problematic because basically most of the testing looks for antibodies to Lyme disease, not for Lyme disease itself. And there's scientific reasons why they do that.
But the fact of the matter is that, not everybody. If you're too sick with Lyme disease, your body is too weak to produce antibodies. So the test says, no, good news, you don't have it. And but it's there. There is a lot of movement happening with that. The The health and Human Services Department has actually partnered with the Cohen Foundation to do a I can't think of the word right now, but it's a challenge, like a test.
It's like a, for companies there's a money.
Mary Collins: Okay Sure. Like put out a, out a call for ideas or, yes.
Dorothy Leland: Right, right. And so they just went to the first they fixed the, and it's to develop specifically to develop a new test for Lyme disease, an early test for Lyme disease.
Mary Collins: seems like, yeah, it could be to the point, if we can be in five, 10 years, if you're feeling, if this just, it would be an easy, like you go in, even if you don't know if you were a bit by a tick, but standard protocol for someone comes in, they're having these types of symptoms, oh, check off the Lyme disease box when they resend 'em out for the blood work.
And then, I'm sure that would, that's probably the dream because then everyone could.
Dorothy Leland: Yeah, why, and the thing is, I think most people that, that aren't in the middle of. This think, oh, you just get tested You just get tested. Do you have it or not? And the fact of the matter is that there has not been there. Now there, there are tests that from IGeneX and other companies that can show.
Information that it's important to doctors, that doctors understand what that is. If you just take a test it isn't just, you're pregnant or you're not it's not, it's not a toggle switch. And Lyme disease is such a complex organism and it can affect people's bodies.
Such different ways that, that there just isn't, that it just people.
Mary Collins: And that's the thing it's also too, which I, because it's not, it's Lyme disease, but then there's also all the co-infections like, and I think don't realize, they think I've got, it's Lyme or it's nothing. But the more it's, there's all these different, there's so many different infections you can have with Lyme and it seems like most people have more than one and it's like kind of a, Lyme is the umbrella.
Is that the good way to describe.
Dorothy Leland: Oh, I think so. Some people some doctors will, authors of books will refer to it as like Lyme complex or Lyme plus, which is that it's Lyme disease and whatever other nasty stuff is in there with it. And. It's, it's one of those things that there's different strains of Lyme disease and so it's, and there's some, there's strains that are more common in Europe and others that are over here.
And and they react differently in tests in different parts of the
Mary Collins: Mm-hmm.
Dorothy Leland: And, the sort of, for a long time, one of the standard tests was really based on. The kind of disease you'd get if you were bitten in New York and , so in California that, that's maybe why a lot of people would test negative.
There's also things that are, there's, relapsing, fever and other kinds of things that have similar symptoms to Lyme disease, but, and are carried by ticks, but they're not technically Borrelia burgdorferi, and so they don't show up in these tests. And it's just it's problematic. And the tests, as they say, the tests can be useful but it isn't like a lot of times people, I get contacted from people all over the world, , and sometime my heart goes out to them, but they'll say, just tell me what test my doctor should order. and it isn't that easy. It isn't that there's not a slam dunk if you just got this test and then if they test positive, just tell me what antibiotic I should take. And it's just, it is so complex that it just isn't that it, it isn't it? It isn't a slam dunk.
Mary Collins: Yeah. No it's a chronic, yeah. And it's the chronic, the part of it and the, and see, and just the different so many different symptoms to ailments that people have, like you said, and depending on their genetics and what's going on in their life and maybe some other underlying health things.
And no it's. . It's shocking. And then it's amazing though. But then you can recover. Look at your daughter now, but does she have to be careful? If she was bitten by a tick again, is there, could it be like reinvigorate, reactivated, or anything of that nature
Dorothy Leland: uh, Or you could get a different strain of it. It's not something like if you got over it, never get again. that you could get it again, you could get it again. Also there are reports of people getting covid and then it reactivates all this other stuff. And so some, reactivates, Lyme, reactivates, Epstein Barr, a lot of people that have Lyme disease also have Epstein Barr which, did they get it from the Tick?
Did they get it? The Lyme disease lowered their defenses and they got it from some other way. It's who knows? They have it. A lot of people with Lyme disease have Epstein Barr and some people, some authorities argue about whether Bartonella is carried by tick or not. And It's yes, they say Bartonella is in ticks, but we haven't been able to prove that they transmit it.
But the fact of the matter is a lot of people that have Lyme disease also have Bartonella. And I was heartened at an, at a recent meeting and the watched of the Tickborne Disease working group where somebody said something and Dr. Ben Beard of the CDC said, cuz the CDC is always oh no, it's not
tickborne, it's not Bartonella.
And he said we don't know if it's tickborne or not, but we're willing to accept the fact that a lot of people with Lyme Bartonella. And I thought, oh, hallelujah. But there was, I was contacted by a parent really that her son had been bitten by a tick and got real sick. He was, they live in California, he was back school to go back east going to college.
And he had tested for Lyme disease and he. Lyme disease, but he had all these various symptoms. And so when he came home for Christmas, this was actually maybe a year ago, and then when he came home for Christmas they arranged for him to go to one of the Lyme doctors in the Bay Area who tested him for a lot of different things.
And he never tested positive for Lyme, even with a lot of things. But he had three different strains of Bartonella. Which Bartonella, is awful
Mary Collins: Yeah.
Dorothy Leland: It's horrible and it can cause all kinds of stuff, including mental, psychosis. And so it's just, there's a lot of stuff out there and it just, it isn't terribly helpful when somebody is feeling sick and you go in, Yeah.By a tick and now I feel horrible.
And then they say, good news, you don't have Lyme disease,
Mary Collins: And then you're just like I still feel horrible, so what's that doing
Dorothy Leland: Because of their
Mary Collins: Right,
Dorothy Leland: you And and you probably do have Lyme, you may very well have Lyme disease as well as any of these other things. So it's really it's really complex and doctors. My understanding is in medical school they don't get that kind of, they don't get training in that. And that has to change. And there are, Lyme organizations that are working to change that on different fronts. But there's a lot of entrenched interests and it's hard to change. One man that I talked to who was retired professor from, I believe it was UCLA, said that in their medical school they got doctors in training, got one hour, was devoted to vector-borne diseases,
So that includes mosquitoes and other
Mary Collins: sure. I'm saying there's a lot. Oh my gosh. Yeah.
Dorothy Leland: Yeah. And so in, in all of medical school, and then you would think then infectious disease doctors, wouldn't they get more in their training in the, the fact of the matter is the Infectious Diseases Society of America has been has put a huge road roadblocks to to anybody learning or getting treated for Lyme disease.
Mary Collins: so then, but you all like actually maybe then that can subject to the, MyLyme data cuz you're trying to get data about people with Lyme disease and then that could be used to say to these institutions, hey, there is a huge, there's a very large community of people that have this sickness and at least you can have some sign.
There's been, no one had studied until you really started this. My Lyme data. If you could tell us, idea behind that.
Dorothy Leland: it in. Yeah, we started it in 2015 and the idea, it's a patient registry, and so if you live in the United States and you have been clinically diagnosed by a doctor as having Lyme disease, Then you can be part of the study and you put it, it's basically a bunch of surveys and you start out with initial background about, do you know, were you a bitten by a tick to your knowledge?
How long ago, when was it, when did you start having symptoms? How many doctors, how, how many doctors did you have to see before you were diagnosed with Lyme disease? And. What kinds of treatments have you had? So people have people do an initial an initial inter, interview such as it is, questionnaire.
and then they get they get an email every, I think it's every six months saying, will you update it? And so it's have you had a change of, symptoms? Have you gotten better? Have you gotten worse? Have you done this treatment? Did it help? All of that kind of information has just never been collected about Lyme disease before.
When there's heart disease and various kinds of cancer there's been tons of studies like that. And so one of the things we do is to work with researchers that are trying to. Solve the conundrum of Lyme disease. And it's very helpful for them to, for researchers to have this kind of information.
And, and so one of the things that the fact is this is self-reported, and so it tends to be people who are still sick. If somebody is bitter and is going on living their life. They're less inclined to come and do this kind of thing, but we're very interested in them too. We have some people that consider themselves including my daughter , that are in this, that are in this program.
But this, in 2023, we're gonna do a push to get more people who are well, to share their experience of what helped them get well. And that's interesting information for researchers and just for people, other people to say, you know what, what helped? And so there are various questions that go through that divide people into categories.
And so some people consider themselves well and other people. . They don't think they're all the way there yet, but they're, they've substantially improved. And then there's other people that still feel very sick. And so there can be in, it's, it would be interesting. It is interesting to find out what works, what helps and We have a new study that's been, that's gonna come out about excuse me, that I can't really give any detail about, except that it has to do with the differences between men and women how they respond to Lyme.
And there are major
Mary Collins: . Mm-hmm. Interesting.
Dorothy Leland: and so that's interesting information and that's something that they look at. In a lot of different things now that, for years, apparently all of the research on heart attacks was only done on men
Mary Collins: Yes. Yes.
Dorothy Leland: And so they didn't really know whether that applied to women or not, but that was what they did.
And so now they're starting to broaden things out that they are. There are some things that, just biologically are different for with, between, men and women, and so how does that affect with Lyme disease? And so those are the kinds of things that we are looking for.
And we have had I believe it's five articles that have been written in peer reviewed scientific journals based on information from MyLyme data. And that doesn't count the new one
Mary Collins: right. Yeah.
Dorothy Leland: And and so it, it increases the knowlege base Lyme. And so it's, so we're working on, on a lot of, on a lot of different levels.
But also you mentioned, I think you mentioned somewhere legislatively that when we talk to policymakers, a lot more effective if you can give them some figures say, this many people, your constituents, , or not just legislators but policymakers, people that work for the Department of Health and
Mary Collins: Sure.
Dorothy Leland: And things where you can point out that this is the experience of this group of people.
And it just makes it, it just gives something, it gives you evidence, it you something to work.
Mary Collins: Right now, is something then too, that people with, so with people that have had, or have or had Lyme disease can do that? What about people that do not have it, but wanna help, the caregiver, the mother, the father, the sister, the friend? Is there things that people can do just to, help, help the cause as well, that people may, that aren't like themselves afflicted with chronic Lyme?
Dorothy Leland: Yeah. They they can't they can't join my Lyme data. Except in one, one instance, if if a person with Lyme disease has died for any reason, their family member can fill out some information for them to be part of the disease
Database. And it doesn't mean they have to, they could have died in a car accident, it doesn't have to be, they died of Lyme disease. But that's another thing that's hard. Lyme can cause problems with your heart and somebody can. From a heart attack and the death certificate says, died of a heart
And doesn't necessarily say Lyme disease.
Mary Collins: right.
Dorothy Leland: So there are, that's those kinds of things.
There, there isn't, there have been, different groups through the years have tried keeping lists of people that have died from Lyme disease, but it's it's problematic and as I say, it's problem. and there's a woman that I'm aware of that has been, her husband had suffered from Lyme disease and Lyme related problems for years and years.
And then he died and she tried to get Lyme listed at least as a secondary and on a death certificate. They have the primary thing and then they have secondary things and she couldn't get them to.
Mary Collins: Wow.
Dorothy Leland: and she was, I, this was, I dunno, this was a couple of years ago and I don't know if there's been an update, but at that time she thought they would not put that down.
And so when government agencies like C D C periodically go and they do studies where they look at death, certificate Data, it's all, it's all online. And they can say there was something, fairly recent where they said, and in these certain states that absolutely nobody had died from Lyme disease.
If you don't put it on the
death certificate, they can't get it. And so it's just, it's complex. It's complex. And how do you prove, how do you prove ? And but what we do in the decedents registry is that people can give that. Information and so it's, we can collect that.
I don't think we have a huge number in that. I don't offhand. But but, so that is the, that's the way somebody that does themselves have Lyme disease can participate in the registry. In terms of things relative to Lyme disease, I would say if anybody is close to somebody that is suffering from this kind of stuff, as I mentioned earlier, you need information and so we, lymedisease.org provides a lot of information.
We have a free weekly newsletter. We have
Mary Collins: I get it. It has lots of good information.
Dorothy Leland: Okay Okay and so that's something that somebody can do just to be aware of what's going on. Then there are various things. There's something that is sponsored by another group, but we participate in it. It's called the Lyme Fly-In, and it's to lobby congress for Lyme.
Funding and it's it's sponsored by a group called the Center for Line Action, and there were a couple the very first time when they did it was, Early 2020. And that was the last time was on an
Mary Collins: A
Dorothy Leland: long time. It was like February of 2020. And then we went a group of us went around and we talked to our various Congress people and whatever.
And it was I enjoyed it, . I thought it was fun. And then, but since then, what we have done what the group has done is that, that it's done via Zoom. And so you have a group of you from your area will meet, usually not with the legislator themselves, usually with a staff member, but then we'll talk about, they have information and everything, and that's.
That'll be in, that'll be in February. And you can find out information on our website cuz we, we put things about that, but also center for action. And anyway, that, that's, and one thing that happened by now, we've done it two years. 20 was in person, 21 and 22 were via Zoom. And the fact of the matter is a lot more people could participate.
everybody can, there's lots of people that can't fly to Washington, but they participated with with Zoom and I think they had Almost every state represented. And and many people in states, of course I'm in California, we've got lots of representatives,
Mary Collins: Yes.
Dorothy Leland: So lots of people for that.
And that is something that if you have a, if you have an internet connection you can.
Mary Collins: Right.
Dorothy Leland: In that. And then there, there used to be a lot of things like, oh, Lyme walks and things that, that in various parts of the country. And there's still some of that, but there's less of it since the pandemic.
Less of those in-person kinds of things and more zoom type things. But I would say that, in terms of one and involved in changing things. One of the best things that you could do at the beginning is to just educate yourself. And good way to do that is to start with our weekly newsletter,
Mary Collins: . Mm-hmm. . Yeah.
Dorothy Leland: we could go to our website, lymedisease.org, and there's a thing right at the top, sign up for the newsletter and you your email in there.
Mary Collins: And actually too as a partner, I know cause you have a list on your website a lot and that's where with insect shield, because our, in our world we have somebody that can help protect people from even getting the tick bite. So we are a great partner and actually we give proceeds back to any sales that come through your website go back to you all to help you all continue the work that you're doing.
. Yeah. And then, so I have one more question and then we can wrap up because you got, it's what you all do. It's really amazing and the more I've been learning about Lyme disease, just some of the story, it's just heart. It's heartbreaking. But then to know that, there are, if people just knew, okay, I can go to this website.
I think even now you watch the local, A local newscast and it's summer and they do their little tick. Oh, be careful. , the information they give, it's like completely wrong. And you're like, oh my, if someone, if the news station could have just gone through your website or done a quick Google, but they just say some things and you're like, the myths that are out there or just it's so upsetting that there is so much information and yet there's still so much bad information getting out there.
So our hope too is just trying to get, tell people there's really good information. Just make sure you're going to the websites that have that, not just, oh, the local news is oh, just be careful , it's that's not extremely helpful. Or, and the other, I think one of the biggest things, if you get bit by a tick, how to remove it. We posted anything, Dan Wolf from he makes the tick tweezers. We posted one of his videos in TikTok of how to remove a tick. It had over 1 million views in two weeks. So people are neat, are looking for that information.
Dorothy Leland: put it on our Facebook page. . I think we put it on
Mary Collins: and we're like, this, people are needing this and they're not knowing where to go.
So that's what we're hoping from, we can help educate from all angles. But, so I guess the one thing, so the other thing that potentially could make a difference in the coming years is the Lyme disease vaccine. So is it just now, I mean it's what? It's in stage three, is it now just like a waiting game to see really what the results are from that?
Do you have hopes, high hopes?
Dorothy Leland: Well, I think that the Lyme community feels, has a lot of mixed feelings about the Lyme vaccine because the last time that they. It was a Lyme vaccine. It didn't turn out well,
Mary Collins: right.
Dorothy Leland: And so I think people would want something that was safe and effective and but you know who, who makes that decision?
Mary Collins: And there's a lot of different, and vaccines have become a little bit more of a hot topic and Yes. So that's maybe
Dorothy Leland: And then also the thing about Lyme disease is that, as we said earlier about Lyme complex or whatever, is that there's all kinds of nasties you can get from a tick. And it's, things that, there, there are some things in the development stages that. Would react would protect you if there was any tick saliva that was inserted in your body and that would, push out all of the bad stuff.
Because if something even if it was safe and effective for Lyme disease per se what brand of, you know, what strain of Lyme. And also what about all this other
Mary Collins: Well, And that's, actually, yeah, there's so many other tickborne disease. We do a lot with the Alpha Gal community too. And there's, it's, the Lone Star tick is you know that's another can be quite debilitating. But there's so many people like all and getting but doing, I mean that the information they're getting out too, and they're in a similar, seem to be in a similar.
Timeframe of what? Of Alpha Gal and then also the diagnoses. And same thing. Okay. My stomach, I just had this stomach ache and wow, I'd done, I'd been making these connections and, but now again, like people are getting out there and there's some doctors that are like, are finding it, but I'm sure they, some of the people I've spoken to in that community, they just thought they had a bad stomach for, 20 years and had just digestive issue.
Dorothy Leland: And just. You didn't really explain what Alpha Gal is but it's that if somebody's been bitten by a tick the certain, lone star tick and sometimes they develop this allergy to red meat and and for some people it's. , even things that are, peripherally related
To red meat.
It's not eating stuff, it's being, around
Mary Collins: it.
Dorothy Leland: Yeah.
Mary Collins: people. Yeah. Cooking meat,
Dorothy Leland: And so it's yeah and people, there are people that have Alpha Gal and Lyme disease.
Mary Collins: right?
Dorothy Leland: Other kinds of things too. So it's just that whole realm of tickborne, of tickborne diseases
Mary Collins: So it's, yeah. So the, vaccine doesn't, it's, yeah. Maybe there's, yeah, it's, there's other things. Even if there's a Lyme disease vaccine, there's still, so many other tick, ticks are transmitting so many other diseases. So you don't want people then to say, oh, I got the Lyme disease vaccine.
Who cares if a tick bites me?
Dorothy Leland: so I'm
Mary Collins: That'd the worry.
Dorothy Leland: Yeah. Yeah. Yeah. So it's it's it's problematic, but we're, we're watching it with interest
Mary Collins: Yeah. Okay.
Dorothy Leland: Watching it with interest, but it's problematic
Mary Collins: All right, we okay. Thank, I've taken up a lot of your time and, but lymedisease.org really we're so impressed with all that you all do and so happy that we can partner and hopefully, we can, We don't, we know to present people from getting bit by ticks and educating them to how to protect themselves.
And I know you all, explain about permethrin and I'm gonna hopefully give some more information on a guest blog so people from your website can see, all the benefits about using the pretreated product to, if someone in your family has Lyme disease, we don't want, The least, the less amount of people are getting bit by ticks the better for everyone.
Hopefully together it's all about education on all sides. We can do prevention and care and support and I think the more people are talking about it, the more you have a friend and you tell a friend and it gets out there. Cuz I think you are just an all good, but it was your.
Who recommend said you, maybe your daughter has Lyme disease after going to however many doctors, so you know.
Dorothy Leland: I hear that from so many. I, I hear a variation of that from so many people. That I know exactly what it was now, but somebody that I knew, she said she was pumping gas at the gas station and, self service and the next guy and she just said, She said some expression of, she was angry or something and he said why are you so upset?
And she said, all these, my daughter's having all these problems and blah, blah, blah. And all the doctors say, there's nothing wrong with you. And the guy said, look into Lyme disease, It was literally the guy at the
Mary Collins: my gosh. That's, but that's where it's come. If we, the more and more people that at least know that can maybe say, Hey Lyme, just like unbelievable. She had Lyme and that was, and that's
Dorothy Leland: And she, oh, yeah. And she had Lyme disease and lots of other stuff. And lots of other stuff. But it was like the mother was telling me about that later, and she said she'd gone to all these doctors that would no. There's, they don't just say we can't find out what's wrong.
They say there's nothing wrong.
Mary Collins: That's a really,
Dorothy Leland: know You're the mother of
Mary Collins: uh,
Dorothy Leland: this
Greatly child and they say, oh no, there's nothing wrong. Not nothing. What's whoever wrong? And it. Miriam Webster the dictionary chose the word of the year. This year was gaslighting, and that's a word that is used a lot in Lyme disease.
people with support groups and everything. And it's gaslighting is what many of us experience. Just what I was just describing, where you're. My kid is suffering so much and they say, oh, there's absolutely nothing wrong. And so anyway I wrote a blog about that. I thought that
Mary Collins: that . No, that's probably good Yes,
Dorothy Leland: every year the dictionary chooses a word,
Mary Collins: right.
Dorothy Leland: but All
Mary Collins: right. Thank you. I'll let you. Yeah, so well, thank you so much for your information and hopefully we'll get more and more people knowing that. Obviously of course if you Google Lyme disease, you can get to your website, but just people knowing and then can say to someone that maybe they know that hasn't been feeling great for a while, or having these different symptoms like this is some to look into and.
it is all over the country. And it's not, I grew up in Maryland, but every, everyone still thinks of it as this north, new England and it's not. It's everywhere. So no matter where people are in the country
Dorothy Leland: And And Canada.
Mary Collins: And, oh, yes.
Dorothy Leland: Canada. A lot of it being recognized in Canada. Yeah.
Mary Collins: Yeah. No, it's really, it's the more, hopefully, less and less people will get bit by tick and more and more testing and all the work you're doing will help help, generations to come, okay. All right. Thank so much and I will be in touch and I really appreciate your time, Dorothy. Thank you so much. Bye-Bye.