Orchard People

[00:00:00] Susan's Personal Lyme Disease Story
So often on the Urban Forestry Radio Show we talk about the fun stuff. We talk about fruit trees and how to grow them. We talk about pollinators and beneficial insects. And sometimes we talk about pests. And they're clearly not really that fun at all.
Fruit tree pests are annoying because they plunder our crops and they stress our trees. But sometimes I think that those little pest guys are just trying to survive. And while I don't want too many of them near my fruit trees, I don't mind if they have a little nibble here and there. Like we all learned in kindergarten, it's really important to share, right?
But when it comes to ticks, I'm not quite as charitable. That's because five years ago, I was bitten by a tick. And sadly, that little bugger was infected with a nasty type of bacteria. At the time, I didn't know about Lyme disease and its relationship to tick bites. But after getting that teeny tiny little bite with a perfect red circle around it, my health declined.
First, I experienced crazy, unexplained muscle pains that wouldn't go away. Then my digestive system went nuts and my face turned red and spotty. I went to my doctor and asked for help. She did blood tests and she sent me to specialists. So the doctors told me I had arthritis. They told me I had rosacea.
And an infectious disease doctor told me that I'm just getting old. When we're growing older, he said, we all get aches and pains. And as time went on, my problems just got worse and worse. In 2017, things got really bad. My right foot became swollen and doctors didn't know why. My toes and my arms started going numb.
I had no reflexes in my knees. I was dizzy and had double vision. I was exhausted and had anxiety attacks. I couldn't think properly and I could hardly work. I couldn't go for a walk on my own without getting dizzy and of course I couldn't drive. So my doctor then sent me to a neurologist who suspected I had multiple sclerosis or a neurological disorder called Charcot Marie Tooth.
But none of the diagnoses explained all of my seemingly unconnected symptoms. Even if the doctors thought they did their job, it didn't make sense to me. Something else was wrong. So finally, a friend told me that I should be tested for Lyme disease. I had no idea what it was, and so I looked it up online.
When I saw the picture of a tick bite with a circle around it, a voice inside my head said, oh, I remembered that weird bite so many years before. I had a Lyme test done in Canada that was negative, but even Health Canada says our Canadian Lyme tests are not 100 percent reliable. So I found a way to have a U.
S. Lyme test done, and it was Clear. I tested positive for Lyme. My life changed in that moment, in that very moment. I realized I could not leave my fate in the hands of the medical system, which wasn't really helping me. I had to find a way to heal myself. I'll talk about that later in the show. Why am I doing an episode about Lyme in this radio show and podcast?
I'm doing this because Lyme disease seems to be quickly spreading across North America. And it hits people like us. People who enjoy the outdoors and who spend time gardening, walking in nature, and caring for trees. In short, I'm hoping this show will save your life. I want to know that if you get a tick bite, you'll know what to do.
And I want to know that if you already have mysterious symptoms, you'll keep searching and fighting for a solution and advocating for yourself until you do get better.
[00:03:56] Interview with Rossana Magnotta: Lyme Disease Awareness
My guest on the show today knows far too much about Lyme disease. Rossana Magnotta co founded the award winning Magnotta Winery here in Ontario with her husband, Gabe.
And she's going to tell their story. She's also the founder of the G. Magnotta Foundation for Vector Borne Diseases. Rossana will talk about how to identify a bite, symptoms, and solutions. So we have lots to talk about today. But first, please do email us with your questions and your stories about tick bites or about Lyme during the live show.
Or even just email us to say hi. If you do, you could win one of two tick removal kits donated to us by our show sponsor, Universal Field Supplies. We'll talk more about the kit later, so send instudio101@gmail.com. That's instudio101@gmail.com. And remember to tell us your first name and where you're writing from.
[00:04:59] Rossana's Personal Story and Struggles
So now on the line, I have Rossana Magnotta of Magnotta Winery. Rossana, thank you so much for coming on the show today. You're welcome. I'm quite excited here. It's quite an interesting topic. Oh boy, is it. And I'm very passionate about it. Yes, I know. can we start with a little background? I know that you and Gabe were an incredible team.
You started this little winery all those years ago with two types of wine. Is that true? Yes, 28 years ago, with two wines. And, we opened up shop here in Ontario when the government was, Had changed to the Bob Rae government and we had huge problems in Ontario. People were losing their homes and the economy had gone down.
Businesses were struggling. And Gabe and I went into a bureaucratic alcohol business. Can you imagine how difficult that was? And we had three small children. Wow. We had put up our house, for Hawk, basically. We mortgaged it to the Hilt and, we thought that we could start this winery and give it our name to it and continue to grow it so that we could pass it on to our children in the future.
And, we learned very quickly that we were up for a huge fight here in Ontario. we had a tumultuous ten year battle with them, which we won't go into right now, but it was a very difficult and very long and very expensive fight for a level playing field in this business. But it wasn't the fight of our life when we, when I reflect back because we not only fought for our survival in the business, but the fight that we really, had to fight was, we also had to fight Lyme disease together for seven long years.
In 2003, he became ill, not knowing what he had. And it's really interesting, Susan, that your story is It's almost a carbon copy of what Gabe went through. he had double vision, he had balance problems. He had, he's a real avid outdoorsman and he loves his dogs. He had so many English Setters.
He adored those animals and did a lot of training. In, in the fields and, in the outdoors. And, he came across this somewhere. I, probably here in Ontario, but it could have been in Quebec. Or in another Ontario, province because he frequented Alberta and Saskatchewan and out east, but Ontario was his main area and he would go every day with his animals and at the time we were not really very, he was not very, versed in, with ticks and the whole thing with Lyme, but he did become sick on 03 and it presented very strangely because, Lyme disease is one of the greatest imitators and it makes you look like you have a neurological disease or a, or arthritic disease or, sometimes even, more of a psychological problem because it attacks parts of the brain or whatever, but his was very much like yours.
And so we ended up going to, our family physician and we went from one specialist to another and then eventually. only because I was very strong in the diagnostic area because I come from the medical field originally before I got into the wine business. And so I, I clued in to that the test was faulty, as you mentioned already, the Canadian test is very faulty.
They call it the gold standard, by the way, but it really isn't the gold standard. And we can talk about that later, about why this, the serological test fails Canadians, but he was negative. And then until I pushed and we had him done tested in the U. S. and in Germany. Did it come back positive?
And he did have Lyme disease. let me ask you though. So here he got it somewhere. He got these symptoms. So are you telling me that he never noticed a bite? Yes, and that's the, I know you had a circle around yours, but a bullseye rash. Actually, you won't get the truth totally, but it's starting to come out.
It can be in only about 9%. of the actual infections will produce, a bullseye rash. You can have rashes. You can have a bullseye. You may not have anything. And the majority of people don't have anything. They don't even remember being bitten. And that's interesting because, even in situations where you do have bullseye rashes, who's to say it's not on your back?
Or the back of your legs, and you wouldn't even notice it. Yeah, you have to really do surveillance, and so that's what a lot of outdoors people do, like hike and camp and hunt. You're supposed to have a buddy system, you're supposed to check it. Even at home, if your children are going hiking and you come back, you're supposed to really look at one another and go and look in areas where they can't see.
[00:10:02] Challenges in Lyme Disease Diagnosis and Treatment
now, I don't know how long it took for you to actually, get a Lyme test done. Four and a half years. Four and a half years. for four and a half years, you're going from doctor to doctor. And he's getting sicker and sicker. My goodness. And what were the doctors Oh, he was in a wheelchair. He was very sick.
Very sick. He couldn't talk. He couldn't write at the end. his balance was so bad he couldn't walk. And this is a big strapping guy. Oh, yeah. 140 pounds, 6 foot 2. healthy as heck, outside, enjoying the outdoors. He never was sick in his life. And then they put us down this road of, genetic diseases.
The neurologist wanted to check. It took over a year. We lost a year and more doing these tests that came out all negative and that he didn't have any of these things and he, I yelled and screamed and cried about the fact that I think, I think my husband, he's an, avid outdoorsman. I'm sure he was bit by something, maybe a tick, and I think he's got Lyme disease.
Wow. I gotta say, Rossana, we've already got an email from a listener. Now she's from Toronto. What does she say? She says the federal government will not spend the money to get accurate testing in Canada. This is the response I got last year from Health Canada. Infectious disease. That's interesting.
Oh, so she's attached this response. Oh, it's interesting. It might take me a little while to look. Maybe the framework, the four million dollars that the government announced that they were going to give out for, then they had these three pillars. Yes, that's exactly what she sent me here. It's in some small little print on the third or fourth page, but they were really going to spend the energy on, basically surveillance and, And a PR campaign.
We've been fighting this from the beginning. let me, sorry, let me just back up for one second. So I want to explain to the listeners. So this is one of these canned or, regular, emails that the government sends people. If you send an email about Lyme, this is what they get. And it says, we have, we are spending 4 million on monitoring it.
So they, they're saying this is what we're doing. And, but what Rossana is saying is research wasn't top of the list. And I'm also, I also want to point out that to the government is doing a publicity campaign that you see online saying, watch out for tick bites. And that's great. we'll talk about this later, but it's great that people will now watch out about it.
But what if you already got one, then you're stuffed, So anyways, I'm sorry, I interrupted you. It's actually worse than that, Susan, because the people that really are sick with Lyme are not part of The data that they're collecting and we're lost and if you go somewhere else, you're not in the data collection.
So they have no idea how many people really are sick with Lyme disease. and especially because it's, as my situation shows in Gabe's situation, they just don't even know how to diagnose it. So how can you count it if you can't diagnose it? Then the bacteria you need to do human tissue research.
They're not doing it. No one has put money into it because you need to understand how this bacteria communicates to body, to your body, and once you understand it, you can figure out maybe there's biomarkers or something there that we can create a. better diagnostic test that's more solid and inclusive of all the strains.
Okay, let's go back now. Let's go back to your story. Gabe is getting sicker and sicker. He's in a wheelchair. Finally, you realize from the U. S. test and the German test, he has Lyme disease. we noticed that before he was starting to get in the wheelchair. We just were having problems getting him treated.
I had an American doctor, I had a German doctor, and my big concern is, okay, I was able to fund this. what happens to people that cannot afford it in this, perfect health care system that people seem to think we have in Canada? Yeah, so did you travel to the States to get treatment?
Did you try different types of treatments? I did. I, I tried everything, but everything was late because I got bamboozled in the beginning of it because they kept on thinking I was an overreactive wife and that my husband had a neurological condition that I wasn't accepting. And, and then they were trying to give him antidepressants because he was depressed.
Who wouldn't be? And, so I kept on saying to these neurologists, but I have a positive Lyme test. yes. Mrs. Magnotta, you, he does. He might have a Lyme, he might have, Lyme disease but he probably has another thing like MS or ALS or, so they were pushing it up to the side, like it wasn't important.
But his symptoms are all in line with this. He's an outdoorsman, he knows he was bit, he was out for one hunting trip after another, he's out in the brush with his dogs. I think he has Lyme disease. It was an uphill battle here. Neurologists were not moving. in the States, was there more awareness in the States when you guys went to try and get treatment?
And how did that work for you? because you have a choice there. You can go to doctors that will be aggressive and treat you for Lyme, and then you can get the other ones that are along, the CDC side, which are, the IDCA or the ILADS. And so you have a choice as an American, which doctor you're going to get treated with.
I went to Dr. Horowitz, Richard Horowitz out of Hyde Park, New York. And, he, he put Gabe under his care, but it was very difficult to actually, get there, because my husband was so handicapped, it was very hard, he wasn't easy to, we had to fly, and then we had to take a two hour, I know car trip and everything, but a lot of people have been going to Dr.
Richard Horowitz because he blends His firm or his practice blends, Antibiotics with a natural naturopathic side. No, you know a lot of people were very interested in that kind of treatment, but we had difficulty because I had to get him at home, I couldn't stay in the U. S. I didn't have the support system with me there, and it was very difficult for him and I.
So we would do telephone appointments, and then we had a family doctor here that was helping me along. That doctor no longer can practice Lyme disease patients or any of these types of vector borne diseases. He's not allowed to treat them, so a lot of patients were, released from his practice and went looking for other solutions, and there wasn't any in Ontario.
There isn't any in Ontario even until today. we've got another email. This is from Susan. I think she's in Ontario. So she says, and she's Susan as well, she says, Hello, Susan, what a very important show. I do not know why our medical powers that be here in Ontario do not give this very serious medical issue the time or money for educating and treating people.
It's a shame. Thank you, Rossana Magnotta, for your, her important and unselfish work regarding this matter. That's lovely, Susan. we are making some movements in Ontario. I've been the little mouse under the rug now for a number of years. I've been working with the feds. I'm also working with Eric Hoskins, our Minister of Health here in Ontario.
And I've made some very significant progress here.
[00:17:35] Foundation and Future Goals
My goal is not only The, this research, facility that I've, that I've, I've made happen here in, in Ontario with University of Guelph, but I'm also looking at a patient care model because we really need a centre of excellence or a place for people that have Lyme disease to go to and be treated humanely.
And that's my focus. My whole idea is to have the, The foundation is funding the University of Guelph's partnership for research, but we also need, a hospital that will, eventually be a place or a clinic or a safe haven where we can, treat Lyme patients the way they're supposed to be treated and eventually through research and testing and support and basically creating Lyme literate doctors, we can start looking at this disease in the right way.
so let's go back to your situation. So, you're getting, you're trying to get treatment in the States. it's not successful. What happened? we can't, we were doing what Dr. Richard Horowitz wanted us to do, but we were getting pushback even from the medical. The doctors here because even the doctor that was treating Gabe was very hesitant to be as aggressive as the American doctor was because he didn't have this all written in a nice textbook that he could, basically, follow.
So the college was not allowing him to be able to be as aggressive here in Ontario because we have a specific protocol for, Lyme disease here, which states, you can only give so much antibiotics for a certain amount of time. And by the way, if you don't have a positive Canadian test, the doctor cannot treat you because they don't recognize tests that are done outside of Canada.
Exactly. So I was already pushing my doctor with a positive test in the U. S. with negative tests, one after another, here at Public Health in Ontario, and we knew Gabe had Lyme disease because as we started giving him antibiotics, guess what? He started to improve. So we had a positive response.
For the first six months, he started having short term memory loss. Oh my goodness, I thought, is he getting, like they say, early onset of Alzheimer's? But guess what, when we gave him the antibiotics His short term memory, was, coming back. Wow. So I knew that the, antibiotics were working.
The big problem with Gabe is that the doctors gave him Solu-medrol for a long time, which suppressed his immune system, which you're not supposed to give anybody who has an infection because what you're doing is you're, dropping all the body's ability to fight. Wow. So he was getting sicker and sicker because we, instead of giving him antibiotics, they were giving him They were giving him steroids.
They were giving him Solu-medrol. Wow. Gabe got sicker and sicker, and then I decided, I had been involved with the Canadian Lyme Disease Foundation. I was a director there, and through them, and through their contacts, I, honed into, and was able to go to Germany. I actually saw Dr. Armin Schwarzbach, who now has his own Armin Labs in Germany, but he was part of a clinic, and I dragged Gabe there, or I dragged myself.
Dragging Gabe there was very difficult and he wanted to treat him with antibiotics intravenously and he wanted to use Biaxin, but my doctor here in Ontario would not use intravenous Biaxin because, it wasn't approved and I would have to go to Ottawa to, under Compassionate Grounds to see if I could get it, and it was just, terrible.
totally impossible to do. So I went to Germany. We were on there for a couple of weeks. He treated him. We came back and then we were, he was given Biaxin by mouth. In other words, orally and we started to have some really great improvements and we monitored his blood through Germany and through the US and we got him to a place that he was getting better.
He actually started to walk on a treadmill with a strap. He was, he had done
And, he started to have some very, significant things were happening that made me feel that he was, he might be slightly handicapped, maybe, and I was prepared for that, but I wasn't prepared for death. And then that night, which was the 30th, the morning of the 30th of December, he actually died.
Wow. And that was a huge shock, and we weren't expecting it, but he, his heart, his mind Had a complication. It was really hard on him emotionally, up and down. We've got this treatment, this will work, then it doesn't work, and then he tries something else. And as a man and as a provider for the family, and he just had a hard time watching me, struggle with doctors, struggle with the business, struggle with everything.
And I just think he just did him in. Wow. And so we lost him on the 30th of December. How old was he? 2009. How old was he? 60. Sixty years old. We had, you know what was really sad is we, this is the same story here over and over again. We fought, we were, it was hard to grow our business and we just got to a point in our business where we could start to let go.
Only God knows how much sufferance he did, but we were at a point where, we settled with the liquor board, we had a decent growing business, we now maybe could go and travel together and enjoy life with one another and it was taken away. Wow. And it happens over and over. in society. You hear this over and over again.
It happened to us. That's an incredible tragedy. after that, I cried day and night. And I wanted to give up. And it was just at one particular point after that, that I realized that I couldn't give up. And that I couldn't let Gabe's death, just go away. I had to bring some meaning to it.
the foundation was born in 2012 in his name just to basically represent or in honour of his unbelievably courageous battle with Lyme disease and the battle that I knew he should have never lost and I knew that at that point I had to hone in, not on awareness or any of the other things that other organizations are doing, I needed to go after the culprit here, I needed to get a better diagnostic test because The one that we have is not good, and the only way that I'm going to change the world here is to prove, with no doubt, peer reviewed, solid research, and that should go, science is going to be my weapon, and that's why G.
Magnotta Foundation was born. Oh, that's so amazing. Oh, so beautiful. Rossana, Gabe's story is so tragic. And like you, I want to make sure that every single person who listens to this show is empowered and knowledgeable. So that they can know what to do right away if they get a tick bite, and to help stop this terrible disease.
We're going to dig into identifying a tick bite, removing a tick, how to get treatment early on, all that stuff.
[00:24:55] Listener Emails: Early Signs and Symptoms, History and Vectors of Ticks and Lyme
/Let's talk a little bit now about the early stages of the disease. What can you do to protect yourself if you have a tick bite and you don't know whether or not that tick is carrying this deadly disease? Rossana, do you have any idea, if somebody is bitten by a tick and they know that this is a tick bite, how likely is it that tick will be infected?
First, on the percentage or the number that out of ten how many ticks are actually carrying the Borrelia. But, I believe through My reading and my, and speaking to researchers that it's definitely gone up and we're looking at probably between four and five percent, four and five out of every ten ticks may very well have Borrelia and the problem is no one can negate that because it's a guessing game on it, but we are seeing more and more patients, having these weird symptoms and eventually either going outside of Canada and finding out that they have been infected with Lyme.
and do you have any idea where in North America infected ticks are being found? We know it's new to Ontario, or newer, that's the problem, Susan. It isn't new to Ontario. This is what the feds or the government wants you to believe. But we have signs, we know that, that Borrelia has been here in Canada for a very long time.
There are all kinds of cases back in 1980 or 70 that people were talking about Lyme disease. And all of a sudden, sometime in the 1970s, if you remember that, Long point. They had the birthday public health had the burning of all the deer and their carcasses and they were trying to get rid of I was in the hospital working at that time and I remember this kind of vaguely But I did speak to someone who was working for a public health who was asked to go out and do all this and eventually He had Lyme disease.
No, they were trying to cover it. They thought by Killing all the deer and burning their carcasses. They were going to deal with it. this is not carried by deer It's carried by the little birds. The birds are the culprits. They come into our environment and we know we have to So many birds that come into Canada from the U.
S. or wherever, and they are carrying these ticks on their backs. There's billions of ticks on their backs. And then we, they come into your backyards and people feed them and they drop all these ticks in the spring in your yards. Wow. and then they infect the rodent population and then it ends up hitting the larger mammals and people.
And humans. They get hit, they hit your rod on people. So it's not. The deer, have them, but it's the birds that come in. Now I want to read a couple of emails. We've got one from Jazz. So Jazz says, Rossana's story /really ticks me off, no pun intended. She says, the story is so sad and really gets me mad.
I would have sued. That's the only right these bureaucrats, this is the only right these bureaucrats get anything done. I'm not sure /what that means, but I think fighting maybe brings attention to it. And that's the only way you can make. Yeah, especially if there's an election year, that's when they listen, right?
Yeah, that's true. Now here, like if you have an election and you keep on complaining and complaining, it never goes anywhere after the fact that when. pre election. Unfortunately, it's very sad, but that's just the way it works. And that's what I'm trying to do right now. And I'm getting the ears and the, eyes of the right people at the moment.
And I'm going to capitalize as much as I can on this because this is the right thing to do. We need the truth, for goodness sake. If I have to put money, if I have to give money to, it's sad that, a corporation or We have to put money into getting the truth out of this, but I asked the government, what are you doing?
What are you doing? This is what I'm doing. What are you doing? Now we have another email from Kathleen, and this is interesting. so Kathleen says, and I'm going to summarize it a bit, it's a little bit long, but she says, My story involves our pet laboratory retriever, Birdie, that's the name. My husband and I live in St.
[00:29:16] Birdie's Lyme Disease Journey
John, New Brunswick. One of the first areas of all of Canada where Lyme carrying ticks were documented. So Birdie's now 12. She was around 7 when she began to limp. They took her to the vet. Originally, they thought it was a different problem, but in the end, it looks like they discovered, that she was positive.
she had a positive test for Lyme. She was put on antibiotics and responded well. did a number on her joints. Okay.
[00:29:46] Veterinary vs. Medical Community on Lyme
she says here, according to our vet, while the medical community is very rigid about treating Lyme, the veterinary community is more open. They are. Mount Allison University is doing research here in the Maritimes and we have sent them some of Birdie's blood to help in the research.
Kathleen, thank you for that. I want to add myself that I have a contact who is also a vet who says every year he is seeing more and more cases of pets with Lyme. But here's what he also says. He says, the owners come in and they say, I'm really not feeling well. I don't really know what's wrong.
And by the way, my dog is sick. And he says, you have Lyme. Go get a test and go get treated. He says, I have diagnosed more Lyme patients than most doctors have and he is a vet. So he sends these people off. He's very passionate about it. Yes, what happened to Gabe and his dogs when, when our vet, heard that, Gabe I was suspecting he had Lyme.
He said, what's the big deal? When I have a dog that comes in that's walking weirdly, I don't even wait for those results to come back. I put them on antibiotics and most of the time they just respond beautifully. So what is the problem with these medical doctors?
[00:31:02] Challenges in Ontario's Lyme Treatment
And the problem is, obviously veterinarians are under a different board that controls their practice, but under the medical doctors here in Ontario, the College of Surgeons and Physicians, they control, how long, what they describe or define as Lyme disease, and they all have to follow the party line on this, and even the, the amount of antibiotics that you're going to give, but only if you have a positive test.
M. D. s here in Ontario are hamstrung, and I don't want to blame the doctors because it's really their marching orders that they get, but if you're a patient in Ontario, and you think you have Lyme. You're really out of luck here. You're out of luck. I am sending them out to some MDs, naturopathic doctors out west, because the MDs in Ontario cannot administer antibiotics.
So if you want to really affect a disease or an infection they will use other methodologies, but if you want to be treated with antibiotics, you're going to be out of luck here in Ontario as well. MDs at West, for example, are under a different board, and I have a few doctors out there that are doing a great job with patients that I'm, recommending for these patients to call and speak to these doctors.
So we're finding ways to circumvent the situation here, but it's a sad state of affairs because it costs Ontarians a lot of money and a lot of aggravation and their families are just devastated because they're not getting the support they want here in Ontario. We have, there's a, I got a couple of emails from Rita.
I think Rita's from Ontario. The first one, she was saying that the line has been breaking up somehow. and I've got to tell you, Rossana, we've never had a problem with a unclear line. So I just find it so interesting that this program is the one that is so important and people aren't hearing the whole thing.
But hopefully by now that's been fixed. But anyways, Rita writes another email and she says hi.
[00:33:05] Tick-Borne Illnesses and Vaccination
When I visited Latvia, because tick borne encephalitis is a reality, I began a set of vaccinations before leaving Canada and followed through with the whole regime. Three shots over time. In Latvia, even children receive these vaccinations.
I don't know whether there is any relation at all between Lyme disease and tick borne encephalitis. I've read about some kind of tick related illnesses. identified in the Powassan area. Now, I just want to say that online I have heard, discussion about a vaccine. The vaccine is a really, it, they did a vaccine in the past, but it actually backfired.
And it didn't work, and it actually, people's immune system, so it was unsuccessful. They've been working on something new, but the problem that I have here, and I've put this on my list with my University of Guelph research project, is that vaccines, and I've talked to lots of researchers, in order to really provide or build a proper vaccine for Lyme disease.
[00:34:16] Understanding Lyme Disease Organisms
Is that you need to understand this organism really well. And there's different strains of organisms. strains of the Borrelia, I should say. And co infections that will affect a person. So let's say you create a vaccine for Borrelia burgdorferi. And you have. Another Borrelia that may have a different, there's just proteins and sugars that are made up with these organisms, that it's very difficult to really identify exactly what your body is supposed to do in terms of this organism.
So until we have a proper diagnostic test or a proper understanding of what this organism does and thinks and how it operates, and what does it look like, totally, from a microscopic point of view, or a DNA point of view, it's very hard to create something that's going to protect you from this out in the, out there unless you understand it all.
So vaccines are on my list, but we need to first understand the organism. properly and then we understand how to treat it because we know how it operates and then you can understand how you're going to stop it from affecting a person with a vaccine. Okay, there's an order here. Yes, exactly. Because if you go out with a vaccine, most likely it's going to fail because we don't even understand this organism really fully.
So we understand it in a lab, but we don't understand it how it works in a person's body. That's what I want to do with the research, is that we want to understand it, how it works within your body. Body in your organs and your proteins and maybe a DNA. Why do some people get really sick with Lyme?
And some people can actually function. Why did my husband end up in a / wheelchair when some other ones don't? There must be something within the body, your makeup, your enzymes, your proteins, your DNA, something that affects differently with this, that causes these effects with this organism. No one can answer those questions.
We need to find the truth. Exactly. So let's, okay, we've got a lot of people listening right now.
[00:36:26] Symptoms and Diagnosis of Lyme Disease
So, I think we need to backtrack and just say, okay, so what do you do if you think you have had a tick bite, whether you've seen it or not? What do you do if you've got some symptoms and what are the symptoms to look for?
Do you get a flu like response? So can you give people a little summary? It is, it's a really hard thing to, you need to. understand where you've been, what you've done, if you have a mild flu like condition, it could be mild, followed with something, things that are strange, like with Gabe, it was red eyes, he ended up having double vision, he ended up having balance issues, it was things like that, we went to the ear specialist, the eye specialist, these are weird things that happen to you, maybe you have more gastric problems, or, You have heart arrhythmia that, it just doesn't make sense, or maybe more anxiety that comes with other things.
Whatever is different for you, you need to listen to your body, and you have to fight, you have to work with your doctor. Please, I want to see if I, I think I have Lyme disease, maybe, because I saw a tick or I didn't see a tick, but I have these weird things, and it just doesn't make sense.
And you hope to find a doctor that can listen to you. Now, we are working with, with Eric Hoskins to try to get him to, to basically, send something out to these people. The physician circles so that physicians won't just throw you out of their offices or out of eMERGEs by being a little more compassionate and understanding.
Unfortunately, you really, I have no real solution for this. This is why I'm doing what I'm doing. But if anyone is in real dire straits that they don't, they're not getting support from their doctors here in Ontario, you could email the G. Magnotta Foundation. there is a way to contact and I can see What we can do in order to, support, or send them in the right direction, whether it's out west or somewhere here with a natural path, depending on what they have in terms of finances or whether they can go to the US or not.
We can give some solutions, but there's no Real answer to that question. very difficult to do.
[00:38:41] Tick Removal and Prevention
Now, Rossana, I know that the tick removal kit, you developed it. Yes. So tell me, what is the role here? if you get a bite, you get a bite, can you actually prevent it?
Yeah, you notice that there, it's not going to make it go away. What it will do, it will minimize it. For example, if you have a tick embedded in your body, you can't just use, there's all kinds of things that I've heard that they use. chemicals, they burn it. /You can't do that. You've got to take that tick head out of your skin carefully.
You need to remove the body plus the head that's embedded underneath the skin because if you don't, the head is there. It's just going to continue, contaminating your blood system. So this The tweezers and things that are in that little kit will help you remove it safely. There are vials in there that you can send it out.
There's information on where to send it. What that will do is, it will, you can send it somewhere and they can, they can look and see if we've got, the wrong, the, the, if you have Borrelia in it, so if you have Lyme disease in it. But the main focus of that is not so much about that, it's about Get it out of your body as safely as possible, and then you just watch yourself, you tell the doctor if you have strange things happening, then you can be very suspicious that you may have contracted a Borrelia.
Now, I've heard a story from a woman who went to her dermatologist with a bite, and the tick was still in her, and the dermatologist said it's not, this is, you don't have Lyme, because there are no, white tailed deer in Ontario. Then listen to this, the dermatologist then took out the little tick, but broke it in the process.
No, I would insist that I wouldn't leave unless he gave me at least the three weeks of antibiotics, regardless. Exactly. even if the tick hadn't smushed up inside that person's body, perhaps they wouldn't have gotten it at all. That's really sad that they didn't know how to pull that thing out.
It's sad. Now, we've got an email here from Alice, and I don't know where Alice is from, but she says, This is an important show. Thank you. We need to all put pressure on our government. Thank you so much, Alice. that's really important. Now, okay, once, oh, Alice also says, Susan, oh, she says again, thank you for the awareness.
This is crazy. We need to get these treatments in Ontario. She says, what the heck? And there was one more email, I think. Okay. You know that there is not even a consensus amongst the physicians on treatment protocols? There are some that will do it one way, some will do it a different way. They don't even have that together because they don't know what they're actually dealing with.
Exactly. Here's another one, an email from Natasha who says, Susan, I want people to know that Lyme is the same strain as syphilis and can be spread via sexual intercourse and blood. It's already in our blood bank. Yes, Borrelia is actually a spirochete, so she's right, it's the same family as syphilis. But what's interesting with Borrelia, it cocoons itself, it hides in different parts of the body, it changes its shape, it, it ends up getting into things called biofilms, which is almost like a, an, a place for them to hide, and and then they're very hard to get to.
So they're a very tough disease. We've got an email from Andy, and I'm really glad Andy sent me this. So this is what Andy says. where are we now here in Ontario? Should we be afraid to go outdoors? What is happening to help us? And No, I Yeah. I'm an outdoors person. I'm also a huge gardener. So it's interesting, I'm on your show, is I've actually built a little greenhouse at, on my property.
And I love Dealing with plants and horticulture and all that is really of interest to me. I also am a, I'm a, I'm an outdoors person. I, I don't hunt, hunt, but I'm actually a, shotgun or I shoot targets and I'm out in the forest. I'm out doing sporting clay and some of these other activities, which I'm in the, I'm in.
Exactly the areas where it's to confess it. But I dress accordingly. I'm aware. I wear the proper footing, like shoes and socks and pants. And I, also, I look at myself before I, when I change, I just make sure, I put all my clothes in a, dryer first and let it heat up to the like, the highest temperature in my dryer for 15 minutes because that's the only way you're going to kill, if you have a little tiny tick in there, don't put them into your washing machine because they survive that.
And once they've been dried, 15 minutes, then I put them in the wash. I love that. So there's certain things that you have to, Do in order to enjoy the outdoors. Absolutely. I still enjoy them. My husband died from complications to this, but it's not stopping me from living outdoors. my feeling is that we don't, this is not about fear, this is about getting mad.
Yeah. And so getting mad is saying we have every right to go outdoors and do the things that we love to do. Every, right? And nothing's going to stop us, not even these little ticks. But like you're saying, you wear the right shoes and long pants. You check yourself. but the anger is going to be more useful of saying to our governments, and saying to the medical authorities, we need to know what's going on.
You need to develop and find out what the solution is. Which leads to that, I've put 1. 4 million dollars into this research lab, but if we can raise more money, I can move this faster. I can put more bodies into it. I can do other projects that I have had to put past the three year mark. if people really want to help, if they can help financially, to the G.
Magnotta Foundation, because all these monies are earmarked for the research lab, as well as the future hospital patient care model. That's one way they can help. The other way they can help is by sending letters to our provincial government or to our governments, expressing their anger towards, why aren't we doing more in this area?
streptococcus is an infection that, It could kill you. It attacks your heart and whatever, but if you go to the doctor and they do a swab or a quick spot there, they can tell whether or not you have strep, and if you do, they put you on antibiotics right away because if you don't, it can do some unbelievable damage.
It can kill you. this is an organism too. This is an infection. My dream and my goal is to be able to get to a point where if someone gets exposed to a Borrelia, then they just treat it like a disease. A streptococcus infection and they go on with your life. Exactly. You don't have to be a statistic like my husband.
Exactly, and I think that's the thing that I want to stress is if you know you're bitten and you go to your doctor and the doctor is aware, has some awareness, and you get antibiotics, this won't get worse. You can be cured and move on. Yeah, if you do. The problem with this disease is that if you get tested too early, you haven't, this is what I was telling you before about the serology, it's a serological test, so if you get tested too early, you haven't produced the immunoglobulins that you need that are picked up in this test.
If you're picked up too late, then they don't believe in chronic Lyme disease, so you're also against, in a very precarious situation. So they can miss you in your acute stage, and then they can miss you again because they don't acknowledge the chronic stuff. a patient is just like, how are they gonna help me here?
Because the test is not good enough. We cannot depend on a serological test. We have to find different things in order to identify whether you have it or not. we've got an email from Carla. Carla says, she says, I cannot believe such a simple treatment protocol for this disease is not available here in Ontario.
We waste millions of dollars on crap. I am mad. And you're saying good.
[00:47:13] Susan's Personal Lyme Experience
/ In the beginning of the show I told you about my experience with Lyme disease and the horrible symptoms that I had. I mentioned that I didn't get much support in our Ontario medical system and I had to go about finding a way to get better.
I know a lot of people find themselves in the same situation. So you may wonder what I've done to help myself, and thankfully, while I'm still not 100%, I have slowly been getting better. And now the Canadian medical system doesn't think I have Lyme, so nobody seemed to take my positive U. S. Lyme test very seriously.
So I tried different things, and I just wanted to give you guys a quick list of what I've been doing for the last seven months or so. So I found a local naturopath that specializes in Lyme, and they've been treating me with homeopathic and other remedies. I go to a massage therapist who's a specialist in traditional Chinese medicine, and, traditional Chinese medicine massage.
This isn't a relaxing massage. The goal is for healing health problems. It seems to be helping. I have also been taking a really controversial product. It's called MMS, or Mineral Miracle Solution. So MMS is sodium chloride that's activated by adding citric acid, and it's sold online in various places as a way to purify drinking water.
Now, huge caveat, Health Canada says MMS is an unauthorized drug that contains a dangerous bleaching agent. There have been reports that MMS causes renal failure. And in the States, people have been arrested and convicted for selling MMS as a drug. And yet, online, many people say it's helped them recover from Lyme.
So with no medical options, I didn't know what to do. And I was willing to take a chance and try it. I took a really slow and cautious approach. And I am getting better, though I don't know if that's why. again a caveat, if you are considering it, please research it meticulously and discuss it with your doctor first.
Finally in November, I finally got an appointment with a Lyme doctor in the United States. And she has a long waiting list and I waited months and months for the appointment. By then I was already starting to feel better, which is great. She prescribed a lot of antibiotics and herbs and some I've started taking, some not yet.
But I do feel I'm on the way back to full health. So that's what I've been doing. But what do other chronic Lyme sufferers do?
[00:49:44] Rossana's Advocacy and Research Efforts
In the studio, I have Rossana Magnotta, who is the co founder of the Magnotta Winery and the founder of the G. Magnotta Foundation for Vector Borne Diseases. And that is in memory of her husband, Gabe, who died as a result of Lyme disease.
Rossana, in the medical system, at least here in Canada, there is some agreement about Lyme. Health Canada is they seem to know that it's spreading across the country. There's a new PR campaign warning us to watch out for ticks. but there doesn't seem to be a chronic, treatment for chronic Lyme.
Do you actually think that the medical, professionals think that Lyme disease, if it's untreated, can just go away by itself? Is that the attitude? the problem first off is that they have a definition for Lyme disease that is really unrealistic and inaccurate. And, I spent two and a half years arguing this point with the federal, Health Department.
And, I, They need to embrace, Lyme disease as more of a Borreliosis. In other words, it could be other strains. They, look at it as the B31 or the Borrelia burgdorferi, which is only one of the strains. That's where the problem is. It's the definition. So they think their test is accurate because it's accurate for that one strain.
But that doesn't, it's not realistic in the, in in Canada because there is many strains of Borrelia, like miyamotoi and all the others, that have been around for a really long time. So until they actually acknowledge that Borrelia, is, or Lyme disease is made up of many strains and it is reflected in the diagnostic test and reflected in the medical community, we have a huge problem.
And also, don't these, the Borrelia come along with little, other little nasty guys that are they work together. Co infection. Yeah, co infection. so there's lots of things that could possibly be wrong. a tick is not going to bite you nice and clean with one, one organism. Exactly.
They're filthy, and they're going to give you more than one. They're going to carry along, there's going to be other little things that come along with it. when people come to you, and they have symptoms, or maybe they have a positive U. S. Lyme test, what do you say to them? we look at the bands, and we look at their interpretations of the bands, and that's why, once again, the serological, The serological test that they do, the western blot, or the ELISpot, the ELISA that they do, in Canada it's only based on pretty much one strain.
In the U. S. they've opened it up to a few other strains so you have a better chance of being positive. But it's also an interpretation. If you have two of these bands, or one of this, or three of these, CDC has set, what is a positive Lyme test. And the problem is that Canada has just copied what CDC is doing in the U.
S. And we are missing a lot of potential Lyme patients because they may have two of this or one of that or doesn't have that one if you look at, Europe, they may very much consider that a positive, and yet we've told them they have a negative. those people end up going into the little bucket of chronic Lyme disease, and we were talking about that earlier, and I think you brought it up again right now, is that if you have a nice clear cut, yes, you're positive, and then you're lucky to get your three weeks of antibiotics in the beginning, Then what happens to the individual that wasn't earmarked as a positive, but maybe really was a positive, it just depends on how they interpret those results.
Then they become chronic. Nothing seems to help them. They either get misdiagnosed, which is even a huge problem, because now they've called them MS, or Parkinson's, or Alzheimer's, or chronic fatigue, and all these other ones that get confused. They give them drugs to affect them. That type of an illness versus, maybe they just needed antibiotics.
And so we get that number of people that are bucketed off to the left that are It's terrible for them, because they're never going to get better if they really have Lyme disease. And then you get the others that they don't know what they have. We have lots of those people in Canada, and they consider themselves chronic Lyme, but the system does not acknowledge chronic Lyme.
they think it's just whatever reaction is left in your body, you, your Lyme is gone and whatever you're picking up is just the aftermath. Yeah, I've got to say one of the doctors that saw me, he was quite arrogant and he said to me, if you got a tick bite, if you got Lyme four years ago, you wouldn't have it anymore.
I just looked at him and thought, oh my gosh, really? Then why do you guys treat patients who just get a bite? Why bother giving them antibiotics if it's going to go away on its own? we also know that they come, they produce biofilm. There's lots of research on this. These organisms, they protect themselves.
they're really smart things. And then they cover themselves with this jelly matter, and they hide. And when they, you become debilitated, this is why I was a little concerned, because you're getting better, but you have to keep a really close watch, because what will happen is, as you become stronger, they hide, and then later on, maybe in a year from now, if you haven't really truly got rid of it, And you become debilitated.
Maybe you're sick with one infection after another, or you're under a lot of stress. These little buggers come back out. Wow.
[00:55:24] Final Thoughts
Okay, we got a couple more quick emails, and then we'll wrap up for today. But one is from Cody. hi ladies, thanks again for all of this great information. I'm appalled about our medical system here.
we're, you know what, Rossana, we're getting a lot of people mad. So I guess that's a good thing. It's gonna get better. I can assure you, all you listeners, I'm going to make it better. I'm going to work hard. You're going to help me, but we're going to, we're going to bring change and change is always hard to embrace.
Oh, that's incredible. And listen to this. We got an email from Dwayne. What beautiful email. Thank you, Dwayne. Is there an organization that we can donate to help this cause? Thank you. So tell us again the website that we can go to. I know you've donated various ways. You can donate. We are a fully charitable organization.
You get a full tax receipt. You go to the G. Magnotta Foundation and you will click on donate how to donate and you can donate by, calling into, You can do it by visa or you can do it by check. Whatever is your thing, we will accept it whichever way. Great, and I know that And that money will all be earmarked It goes to the University of Guelph Research Lab and I want to develop that lab into a centre and into an institution.
Institute. I have huge plans for that. I want to be able to work on Lyme disease and then eventually on other co infections or ehrlichiosis, all these other little things that come along with Lyme. Oh, that's incredible. And Rossana, I know you put a lot of your money towards this. I did. And I will continue to do that because I believe obviously in this cause.
It is close to my heart and I deal with Lyme patients every day. In many respects, I deal with Lyme more than I do with my wines, because my winery is truly my heart. I built it from scratch, from very small. But, I came from healthcare, and I really truly believe that this research facility and this whole project is really who I am.
It's my soul. It's really who I am and I really want to, I really want to make, bring change to people's lives. And this is the only, this is the best way I know how to do it. before we wrap up, two people who sent us emails will get free Tick Kits that you designed Rossana. So let's see. Yes, the G.
Magnotta Foundation and CanLyme is on that Tick Kit. But yes, you can order them, you can go to the website. We ship them everywhere. We have them at every one of our Magnotta stores, by the way. If you're close to a Magnotta store, you can buy them, and, or you can be sent online, and I thank Universal very much as well for providing them.
They are a great thing to be thrown into someone's backpack, or in their camping gear, or in their, Anywhere in your car. they're a great little tool.
/ Rossana Thank you so much for being here today sharing so openly and I hope I've been able to shed a little bit of light on, a little bit on any of your listeners because that's the only way we're pioneering this right now and I need so many people to carry the message.
Excellent. Oh, thank you so much and you be well. Thank you. Okay. Goodbye for now. Bye bye. That was Rossana Magnotta, co founder of the Magnotta Winery in Ontario and founder of the G. Magnotta Foundation for Vector Borne Diseases. The Urban Forestry Radio Show is over soon for this month and I hope you really learned a lot from the show.