A Household Against Lyme

[00:00:01] Speaker A: Welcome back to Integrative Lime Solutions with Dr. Carl Feld. I am so excited about the show. [00:00:07] Speaker B: That we have ahead of us. [00:00:08] Speaker A: We have some phenomenal information that could save lives. I am Dr. Michael Carlfelt, and with me, I have my co host, Tanya Hobo. [00:00:19] Speaker B: You're going to need to tune in to what's going on today. The information is unpacked, so, yeah, don't step away. [00:00:29] Speaker C: So excited. Let's go ahead and get this started. Welcome to Integrative Lyme Solutions with Dr. Carl felt. And today our guest is Terry, and I'm so thankful to know that she is not battling Lyme disease. However, her four children, all four children, three girls and a son, has been through this journey, and so super excited to have you. It's always just a nice, different perspective to kind of hear things from a parent and or a caregiver of somebody going through Lyme. So you obviously have a lot of experience with this, so we're excited to have you and hear the journey of your children. So thanks for joining us. [00:01:16] Speaker D: Thank you for having me. [00:01:18] Speaker B: Well, I mean, it's hard enough being a mother raising four children and then having four children battling lime at the same time. I can't even imagine. And your hair is still beautiful. You haven't pulled it out. [00:01:36] Speaker C: It's not all gray. [00:01:38] Speaker D: Exactly. [00:01:40] Speaker B: It's amazing. When did the first one develop any kind of symptoms that concerned you in any way? [00:01:54] Speaker D: Well, it was a beautiful May day, one of the first warm days, and my three girls, who were really young at that time, wanted to go outside and play. That's what they always want to do, especially in Chicago, when the weather, the sun comes out. So we all went to the backyard and we were playing. And then that night when the girls came in, my husband and I noticed several ticks on all three of them. So being young parents and uneducated parents on how to remove ticks, we got the alcohol out and put it on a cotton swab and tried to get the tick to back away, and we twisted those ticks to try to remove them. And that was a big mistake of ours. We did not remove the ticks properly. So after what we thought was removing all of the ticks, the following day, we found. Or maybe it was two days later, we found a very large tick in my second daughter's head. She had dark hair, and the tick had kind of found its way to a spot where we didn't notice it, and so we tried to remove it, doing the same thing with alcohol in a cotton swab. Trying to get it to back away and pulling it with tweezers, and I managed to get half of that tick out of her head, and the other half was in. So we called her pediatrician and took rose in for a little visit. And she was temper tantrum age. She was about three or four, and the doctor could not remove the other part of the tick. And he said to us, you know what? Leave the tick in there. She will absorb it into her body and eventually poop it out. And there's no such thing as, there's no Lyme disease in Illinois, so you don't have to worry about it. So that was kind of the beginning of our journey, and then the year following. [00:03:52] Speaker C: I'm sorry, I just have to stop you. Yes. [00:03:55] Speaker B: Poop it out. [00:03:55] Speaker C: I have done so many episodes, and you know what? Why does it never. Something never surprises me. Like, never surprises me. Seriously. It will absorb it. Your body will absorb the tick, and you will poop it out. [00:04:09] Speaker D: Yeah. Good advice. Right? [00:04:11] Speaker C: Mind blowing. Mind blowing medical doctor. Yeah. [00:04:14] Speaker D: Told us that. [00:04:18] Speaker B: Also. Kind of. Now, for all the listeners, how should you remove the tick? [00:04:26] Speaker C: There you go. [00:04:27] Speaker B: If you would have done it differently now, what would you have done? [00:04:33] Speaker D: So you don't want to scare the tick. You don't want to scare the contents of the tick's stomach back into you. So there's only really a couple of proper ways to remove a tick. And the proper way would be to use, like, a tick spoon and lift it straight up or to go with a pair of tweezers and pull it straight up. You don't want to twist it. You don't want to do anything that unsetles that tick because it's hosted on something else and now it's hosting on you. So the worst thing you can do is startle it and have it unload the contents of its stomach into the body. [00:05:05] Speaker B: Yeah. Because it's literally puking out what it has in your stomach into you. And then whatever infections that are in, that is what's going into you. Exactly. If you scare it. So if you put a match to its butt, and obviously it's going to be happening. [00:05:27] Speaker C: We hear a lot of things. I saw several years ago that they had. You said a tick spoon. I've seen, like, these little tick tools. I've never seen one in person, but I've seen them, like, online, I'm guessing maybe for the people. Now, don't take this wrong. Yes, lime is everywhere. But for the people that live where it's more prevalent, I think I would just have one of those on hand, right? [00:05:50] Speaker B: Exactly. [00:05:50] Speaker D: Yeah, I have one on hand. I have one in my car. I have one in my husband's car. [00:05:56] Speaker C: I don't blame you, for good reason. [00:05:58] Speaker D: The other thing that's important is to remove the tick as soon as possible. So as soon as you see that tick, you want to remove it and then use some alcohol to clean the wound. It is an animal that's been other places. There's a lot of things that can happen with bite. And then another thing that I do is mix the bentnite clay and make a little pack, like, with water. And then you put it on the wound, and it kind of acts as, like a vacuum. So it's not foolproof. It's not definitely going to work. But I like that. Going the extra mile at this point. [00:06:34] Speaker C: You know what? I'm really glad that you said that, because I think that's a fantastic idea. I think that's a fantastic idea. Bentnite clay is great. Okay. [00:06:43] Speaker B: Yeah. You do it for any other kind of infection and wounds and to pull garbage out of your system, so why not? [00:06:52] Speaker C: I like it. [00:06:53] Speaker B: Tick regurgitation. [00:06:55] Speaker C: We got the lime specialist, the lime pro right here with us tonight. I love it. [00:07:00] Speaker B: Well, when you've had four children, right. [00:07:03] Speaker C: You learn a few things. [00:07:06] Speaker D: Yeah. [00:07:08] Speaker B: Yes. I apologize. [00:07:11] Speaker D: The year after we had the ticks and we removed the ticks improperly, that was the sickest year of my children's lives. So they were young, though, so everything was kind of explained away. So they would get sinus illness after sinus illness, or rashes or viruses, they ended up in the hospital with rotavirus, but it was back to back to back to back illnesses. And I think that was partly because their immune system was being decimated by the Lyme disease, and so they couldn't fight things, but it was explained away by doctors. They're young. First couple of years in school, they're going to pick up things. They're strengthening their immune system. But that definitely was not what was going on with them. [00:08:03] Speaker B: And it's always fascinating how it doesn't matter which age an individual is at, there's always something that they will use for that age to explain things away. If you're a teenager or you're growing and you're tired, or you're 20 or you're going to college, you're doing so much, or your mother and children. [00:08:27] Speaker C: Have a life, it doesn't matter. [00:08:32] Speaker D: And I guess one thing that I really learned at that time and what I tell new mothers now is you really have to trust your intuition, because doctors can only see so much. So if you know something's wrong, you feel something is different than what they're saying, you need to stand up for your child and be strong and be confident in that. [00:08:52] Speaker B: You, as a mother, you know your child better than anyone, and so. Yeah, exactly that. You can't just go with what the doctor says and kind of run with that. If you feel that something is out of the ordinary, uncharacteristic, then to really investigate further. Yeah, that's great advice. [00:09:14] Speaker D: Yeah. [00:09:18] Speaker B: Worst year, their immune system was down. How did it all evolve? [00:09:27] Speaker D: So everybody was different. Everybody had different symptoms, too. So my youngest daughter just had all kinds of rashes all the time. She didn't speak a whole lot at that time, so she couldn't probably tell me if she was having pain or anything like that. Yeah. And my oldest daughter, she was having migraines after migraine after migraine. And she was a young person, so probably not. That's not a normal thing for a young person to have. I think she was like, maybe first grade or second grade when that stuff was going on. Things just kept progressingly getting worse and being explained away and to the point then where we got to the next stage, and the next stage was, okay, we're going to be sending you to some specialists. We're going to remove tonsils. We need to remove the adenoids. Your kids are sick too much. I think we saw 21 different doctors. We started the lupus path. We started the arthritis, rheumatoid arthritis, juvenile arthritis path. We were with a neurologist for the headaches. And again, my children all had somewhat different symptoms, and my oldest didn't have a whole lot of symptoms after she had her tonsils removed. She really didn't have a whole lot of symptoms after that until she turned 16. So quite a few years later. And then when she was 16, she was diagnosed with dyslexia. And I used to work in a school, so I know that they usually catch that, dyslexia, kindergarten, first grade, when you're learning to read, but all of a sudden, she was being diagnosed with dyslexia. So the Lyme disease, when she was tested in 2015, she was actually my only child that was CDC positive, and I think her immune system was probably the strongest out of everybody's, but it was her eyes. That's what it affected. And as soon as they started treatment with dexycycline, it got better, she went off, and it got worse. And we did that back and forth for a while for. So my second daughter was my sickest daughter, and Rose is the one that had the tick stuck in her head. And the doctor know, leave it, and it'll be absorbed through her body and she'll poop it out. So, with her, it got a lot worse because she stopped getting out of bed. Well, first she started dragging her leg, her left leg. She wasn't walking properly, and everybody would notice it and doctors would notice it, but I think they thought she was being lazy. And then she had pain. She had migraines, and her skin tone would change. You could tell when she really wasn't feeling good. She'd kind of turn ashy gray. She had a lot of hand skin problems. Both two of my girls had, like, glove rashes, where it looks like their hands were just raw and swollen and red and dry, and it was like a red glove. And I believe that's why they were looking at them for lupus or an autoimmune disease. So, yeah, we saw 21 different doctors before we finally found somebody that could help us treat the Lyme. [00:12:58] Speaker B: When did you think about testing for Lyme? Since you're in Chicago and there's no lime there. [00:13:05] Speaker D: Of course there's no lime here. There's a lot of lime here. So it took ten years, and I'm embarrassed to say that that's my biggest regret as a mom. I hate that it took ten years. Hate it, because during that ten years, my children lost a lot of their life, a lot of their development. They don't even remember some of those years. Rose doesn't, because she was so sick. [00:13:27] Speaker C: But, Terry, let me tell you, do not for a second blame yourself or have any bad thoughts over that, because you did everything you were supposed to do as a mother. It was the medical field that failed your children, not you. Not even 1%. Not at all. Not at all. [00:13:50] Speaker D: Yeah. [00:13:50] Speaker C: I mean, it's still hard. I can't even imagine. Who was it that eventually brought up blind disease? Was it you from these ticks? Or at any time during all of these doctors visits, did you ever bring up that I pulled out ticks? Or the doctor that said she would poop it out? Was he just never interested in combining Lyme with her symptoms? [00:14:19] Speaker D: Yeah, they never did. I mean, we're in Illinois, so I think in 2019, there was 541 cases of Lyme reported in our state. So, yeah, they just never put two and two together. But the way that we found out was, I kept looking on the Internet, and everybody said, stop looking on the Internet, you're not a doctor. And they would test with the Eliza, and they always came back negative with that screening test. And at this point, we were going to several different ers. I went to the ERS around me, and then I went down to Children's hospital downtown Chicago to that ER, just trying to see. I wanted different eyes on my children, and especially Rose. She never came out of having these migraines, and they would give her these heavy drugs, and she'd still have these migraines and didn't get out of bed and didn't walk, and it wasn't acceptable to me. So they kept telling me, you don't have Lyme, your kids don't have Lyme. And I said, well, they have symptom a, b and CD, and this daughter has all these symptoms. I kept going over that, and they would get frustrated with me, and I started getting all of the notes, and it would be like, mother is not taking advice of doctor. Mother is not accepting what we're saying. They were writing that in the file about me, and everything was for us. We were being referred to psychiatrists, and I would get so frustrated and so angry. I'm like, my daughter has a migraine. You're referring us to a psychiatrist or a psychologist. She doesn't need to breathe through this pain. She has a migraine. This is not normal. This is absolutely not normal. And swelling of the hands and all these really strange things that happen with Lyme disease that are scary, and they were not comforting. Most of the doctors were not comforting to me, but it was one doctor, and I don't remember which one it was. Finally pulled a western blot, and so I asked for those results, and this was pretty far into the process, and I could see that in Rose's western blot, there was a couple of proteins that were showing up in the IgG and the IgM. And I said, well, there's two or three proteins in each one of these. What does that mean? And they're like, well, it's not CVC positive. You're not positive for Lyme. Well, at that point, I was like, she's got all the symptoms. I'm seeing some proteins. There's got to be something. So I had another friend, and her daughter was unfortunately going through some of the same symptoms, and we found somebody together. We found somebody that would see us and talk to us about us about it, and then we learned about eyelids and doctors that are specifically trained. So we ended up with. I'm not sure if I'm allowed to say a Doctor's name on air. [00:17:19] Speaker B: Go for it. Yeah. [00:17:20] Speaker D: I'm sorry, what? [00:17:21] Speaker B: Go for it. [00:17:22] Speaker D: Okay. So we ended up seeing Dr. Chris. He's in Columbia, missouri. He's like, 7 hours away from us. He was our initial Lyme disease doctor, and he was great. He spent hours with us explaining things going on. He diagnosed them clinically and explained why maybe the immune system could be weaker and not showing, and how Lyme hides and how smart the bacteria is, and it changes shape. So, anyways, we did treatment with him for two years, but again, he was 6 hours away. [00:18:01] Speaker C: Sorry, can I stop you for a second? So, I believe you said earlier that it took about ten years to get the diagnosis. [00:18:10] Speaker D: Yes. [00:18:12] Speaker C: Once you and your friend went on this mission to find this Lyme doctor that actually acknowledged that your children had Lyme disease and that you weren't crazy and your kids were not psychotic. [00:18:24] Speaker D: Yes. [00:18:25] Speaker C: How did that make you feel? [00:18:31] Speaker D: Relieved. [00:18:32] Speaker C: Were you scared? Because, oh, I don't want it to be Lyme disease, because it just had to have been like, something to you after all these years, kind of just finally I'm having some confirmation. [00:18:45] Speaker D: Yeah, I think I definitely was relieved. And to know that at least we could have a path going forward. And no matter what it is, it wasn't only doctors and nurses, it was my family, it was friends that were not supportive either. So, yeah, it was finally good to have a path going forward where I could find help and have it be validated. And I always tell everybody that's new to Lyme disease, there's an emotional healing part of Lyme disease as well, and that definitely was true for my children as well. Yeah. [00:19:24] Speaker C: And I do want to talk about that a little bit more as we go on. [00:19:29] Speaker B: And I still don't have it clear. When did you start thinking Lyme? Because you were the one trying to convince the doctors. Why did you go there? [00:19:40] Speaker D: Well, because they had all these weird symptoms. They had joint pain, they had migraines, they had rashes that came know we had rashes all the time. Their immune systems were really low, so they picked up every virus that there was. My daughter, mary Kate, had ice pick pain in her neck, and she had been going to a physical therapist and doing exercises for, like, two and a half years, and it was making no difference. They had pain and their hands. Lyme has the weirdest things can happen to you with Lyme disease. Their hands would, like, swell up, and I could see them swelling up, and it would scare me, I don't know I could just see the actual swelling going on. But there was one little trick that actually kind of turned my direction and believing that it was Lyme, because I was reading all of this, and I was gathering information, and this was going on over ten years, but I was on a field trip with my oldest daughter, and my daughter's hands were so bad, and my husband was just saying how bad her hands hurt. And I had read something about faking a fever, that the boreliosis likes to live in temperatures cooler than your body. So that's why it kind of thrived or was thriving in the winter in Chicago. So I said, steve, fake a fever and see if you can, by putting a heating pad. Let's get the electric blanket out, or a heating pad, put that on her hands and see what happens. And he did, and it made a difference. Her hands stopped hurting as bad as they had been hurting. So that was another reason for me to move forward and really try to figure this out. [00:21:34] Speaker C: Okay, so, Dr. Kay, explain that. So, I know a big part of my treatment was raising my body temperature. So what exactly. I would think, if you would add that heat, that it would go into hiding. Is that what happened and why? Maybe. [00:21:53] Speaker B: Because you can use heat. Hypothermia is a big factor when you deal with Lyme for the treatment. So that activates immune system. It really kind of makes immune system more engaged in what's going on. And then also the borrelia, or the Lyme is weaker in heat. It's not as active. [00:22:22] Speaker C: That was a brilliant thing to do, terry. I never would have thought of that. See, we should google some things, right? Like, we learn a lot that way. Even though sometimes we think we're dying with every know to mankind if we google something. But, yeah, sometimes we need it. [00:22:39] Speaker D: Well, and sometimes moms just have to do what they've got to. You know, you got to figure out ways to make it better, and there are no answers, so you try everything you can. Another thing that we did with Rose during her treatment was she had pots really bad as well. So we had an electric blanket on her bed, and this was as she was going through treatment, I would come in the morning and turn on her electric blanket 10 minutes before she would get out of bed, and it would help her. I know with a sauna, like, people that have Lyme disease and go into a sauna, it can actually kill the borlia. I'm not sure if it was doing that or if it was just putting it at bay or if it was just because it was cold out in Chicago, and it just helped. I'm not sure, but that was also something that helped her, was turning her electric blanket on, warming her up 10 minutes before she was supposed to get out of bed. A weird little tip. [00:23:37] Speaker C: Yeah. No, trust me, the listeners out there, I actually had a lady reach out to me the other day, and she reached out about this podcast, and she says she likes it so much because we talk about just crazy. I think she said the word poo poo or something, things that she never would have dreamed of had she not heard all these crazy stories. So that tip right there could truly, really be life changing for one of these listeners. So we love all those little tips and tricks. [00:24:09] Speaker B: And that's the thing, is that you can kind of talk theory all day long, and doctors can say this, can say that, but somebody that's been in the trenches and done things and seen the effect, those are the stories you want to hear, because those are the ones that worked. You did this, no matter what crazy it is or how weird or somehow it worked, maybe we can't explain it, but it still happened. [00:24:39] Speaker D: Yeah, it worked for us. [00:24:44] Speaker B: So you and your friend, you found this doctor and 6 hours away doing the treatments and started then with doxycycline. Is that where you started or what kind of treatment did they start with? [00:25:05] Speaker D: So, Dr. Chris, one of the reasons we went to him as well was because he had treated children. So I wanted to go with somebody that had treated children, and I just feel like children are different than adults. So his plan was slow and steady, and that was 2015. So that was at the time where they were starting to introduce really two and three antibiotics all at the same time. He did not want to do that. We started on doxy, and the first thing that Mary Kate did, my third daughter, she started the doxy, and she just broke out in a rash everywhere, everywhere. It was Bullseye rashes all over her body from head to toe. And I guess you can correct me if I'm saying this wrong, but I think that's a secondary rash, right? Like, you get that after the infection and when you start treatment, I don't really know for sure why we got it, but she had little bullseye rashes all over her body. [00:26:07] Speaker B: Fascinating. [00:26:08] Speaker D: From starting the treatment, yeah. [00:26:10] Speaker B: And how did you feel in addition to that? How did she experience it was more pain, confusion. [00:26:21] Speaker D: She was herxing horribly. She had pain, she had digestive issues, both of them. We would do all kinds of different things at home to try to help them with symptoms and with detoxing from their. I guess one of my best things that we did was the Epsom salt baths, and then we put a cup of baking soda in there and that would give them some relief and I think also help detox them a little bit as they were going through it, but it was temporary and they really did suffer a lot with the antibiotic treatment, and that was hard to see. And so they would take an antibiotic for one full month, and then when it was time to start the next month, they didn't want to because it made them feel sicker again, because they would get used to this antibiotic. It would have done its job, they would have been detoxed and maybe put that Lyme in remission or killed it and eliminated it, whatever the case. But then it was always hard to start the next month for them. So we did that for two years. They did an antibiotic, one antibiotic, and rotated it for two years. There was times when we were on two antibiotics as well, and I don't remember what combination he did and why he did that. He did feel like the girls had different co infections as well, and so he did treatments based on that as well. So after the two years was up. Oh, there is one other tip I wanted to tell you about. So Rose was my sickest child, and when you're that sick, your ph levels can tend to be very acidic. So we couldn't figure out why we couldn't get her a little bit better, and she was really having a bad period, and it was going on for like a month or so. So finally I went to Walgreens and got the ph strips and I tested her ph and it was like 4.2. So she was very acidic. So that's when we added the cup of baking soda into the bath. I picked up some of that ph water, which I know there's controversies whether or not that's good or not, but it was good for this case because she drank that. And then she did have a period of, not wellness, but a period of where she got out of bed and chatted with us for a while. So being acidic was really from fighting the disease was really not good. It was keeping her feeling very ill. Yeah. [00:29:01] Speaker C: And I know a lot of people deal with being too acidic, and a lot of times they don't know what to do. So the epsom salt with the baking soda in it was great. [00:29:10] Speaker D: Yeah. So the epsom salts do more like a detox, and then the baking soda raises your ph level, and then we used also just the ph water, which we picked up at. We have a fruitfully yield, like a health food grocery store, whole foods carries it, trader Joe's, all different kinds of places carry it. And it really did work. So from then on, I really tried with treatment to do some ph water every day just to raise their ph. You can also raise ph levels with foods. With green foods will also raise the ph levels, but that's sometimes hard when your kids don't feel like eating because their digestive system is already upset. So we did it the other way. [00:29:55] Speaker C: Perfect. That's a great tip, because I didn't know that about baking soda. [00:29:58] Speaker D: So. [00:29:59] Speaker C: Love learning new things. [00:30:01] Speaker D: Yeah. [00:30:01] Speaker B: And your son, was he part of this journey as well during this time? [00:30:07] Speaker D: Yes. So May 1, 2015, is when my girls were finally diagnosed by Dr. Christ. May 10, which was, I believe, mother's Day. That it was Mother's Day weekend, and all of a sudden, my son's running around and he starts laying on the ground. He said, mom, my heart hurts. My heart hurts. And then I noticed he started this rash that was just going up the side of his shoulders all the way up to his neck. And my husband's Irish, so his skin has, like, moles on his back, and my son has my husband's skin, so he had a tick on his back, and we missed it. And so we'd be at school and everyone would say, this rash, and they'd be so worried about it. And finally we found the tick, and we went to the ER. You're going to like this story. [00:31:03] Speaker C: I'm glad I'm sitting down. [00:31:05] Speaker D: Yes, you should be sitting down for, uh. Because we live in Illinois and we're in a non endemic state. We follow IdSa guidelines for non endemic states. So I brought my son in who was having heart issues. He is a ten year old boy that used to run everywhere, and now he can't even walk because he says his heart hurts, whatever that means. Coming from a ten year old boy and he's got a rash that literally is frightening looking. And it was a Bart rash. But anyways, we went to the ER, and I said, my kids have just been diagnosed with Lyme disease. I'd like you to remove the tick, please. And we'd like to start treatment. I can't get into my Lyme disease doctor for, I believe it was six weeks. And I said, I'd really like to start treatment, and I'd also like to send the tick in to be tested. Well, they had no idea what that was, and they came back and they removed the tick for us, which the nurse did properly and great, and gave us one pill of doxycycline, sent us home, not ten days. [00:32:14] Speaker C: One pill. [00:32:15] Speaker D: One pill, yes, because we've all learned how effective that is. Right? Like, haven't they frightened us over the years? You never just take one pill. You've got to follow through on your whole prescription. You follow all the way through day ten. But no, they sent us home with one pill, and that was the IDSA guidelines at that time. And I believe they're still the same for Illinois currently. So that is the treatment that you get in an ER unless you get a doctor that's willing to give you ten days. So we went home and I called the pediatrician, which I didn't get anywhere with. Surprise, surprise. And so what the pediatrician said is, let's wait. Let's wait the eight weeks. I know that there's no antibodies right now for blood testing, so the immune system hasn't had a chance to react, so we can't test early for Lyme, so let's wait. [00:33:09] Speaker C: And I can only assume that you're telling them, you have three young girls at home that you've been diagnosed with for Lyme. You've been dealing with this for years. [00:33:20] Speaker D: And still they were diagnosed ten days prior until. [00:33:24] Speaker C: And let's wait eight weeks. [00:33:26] Speaker D: You have to remember, too, in my files, it does say mother not agreeing with us. I think they think I'm crazy at this point. I don't know. This was a different pediatrician than the one that left the tick in Rose's head, but he did not want to touch it with a ten foot pole. This is also when the lime wars were going on. This was May 2015. So in 2014, they were taking away medical license from different doctors. Maybe the doctors were afraid of that. Maybe they were, I'm not sure. But he said, let's wait. Let's wait the eight weeks. Let's test him in eight weeks. So I did that, and I didn't even have to wait. His personality changed so drastically in that he had Lyme rage. He was in third grade at the end of May, and we went to a christian school, and he won the award for being, like, the nice, kind kid in the class. And it was voted on by the other kids, the one that's thoughtful, and I wish I could remember the Bible verse right now. It's escaping me. So that was the end of May. By the time July came around, he was playing baseball, and I caught him behind the. He took his bat, and he was just slamming it on the backstop, and he was just so angry, and I had to physically grab the bat, and his personality changed so drastically, and he had Lyme rage, and there was a book that's been written, and I ended up reading the book, and, I mean, I related to that mom. I was so glad and so thankful that she wrote that book, because it really helped me at that time. But about the time that I grabbed the bad and we were seeing these huge behavioral changes was the time that we finally got in with Dr. Christ. And then my son started a two year treatment with Dr. Christ. So his was completely different. His was much more psychiatric. And I don't know if it's because he was a boy or because of the type of tick, or that it was Bartonella or. I'm not really sure it affected him emotionally. He had some depression. He still has some digestive issues from that. He still fights some depression a little bit, but not like before. So very different journey for him as well. [00:36:14] Speaker C: It is just so crazy to me how you've got three kids, three girls, and they all have different symptoms, and then your son is totally different, and Lyme rage is such a real thing. It's such a real thing, and it's just crazy how there's just so many symptoms of it. I've got to say to these traditional doctors, I get it, because sometimes we do sound crazy. We can go in there one day and say, this is all hurts, and this is what's going on, and then the next time, no, that's better. But this is. I get it. We might sound a little like a hypochondriac, and so we'll give them that much, but if they can't figure it out, just don't dismiss us. Don't dismiss us. Send us somewhere else. Say, you don't know something. It's just these doctors that lose their license for treating Lyme, these doctors who won't acknowledge Lyme, those are the doctors that need to lose their licenses. Yeah, that's my $0.02. [00:37:22] Speaker D: Well, I wish there was more training for doctors, and even now, if I were to go to my pediatrician, I would know so much more than my pediatrician about Lyme disease. So I've made it my mission to learn as much as I can, and I've actually continued my education. I'm a holistic health practitioner and certified Lyme specialist, which just really means more of an educator for Lyme disease, and I've been a peer advocate. Now and a support group leader for Lyme disease for years. So, one of the things that happened to me was when my kids were going through this, and I was so horrified and the emotions were so strong, I got down on my hands and knees and said, please, God, show me the way. Shut the doors, the wrong doors, and open the right ones. And I made it my mission to not. I mean, I don't want any other mom to ever feel this way. And so I've really worked hard to try to be an advocate for Lyme disease and an educator. [00:38:27] Speaker C: I love that your children, honestly couldn't have had a bigger, better mom for them, for this journey, because I can't imagine, let alone I couldn't imagine having four children, all young, four children, running around the house, but then with them all sick, it just truly is mind blowing. And. Do you mind if I ask you a personal question? [00:38:57] Speaker D: Sure. [00:38:58] Speaker C: Now that you're on the spot, so. Right. How can you say no? Sorry. It just kind of popped into my head. So, during this journey, the struggle is so many different things going on. You've got sick children, you're losing your mind. I'm sure it was expensive. How was this for you and your husband? [00:39:17] Speaker D: Very stressful. Yeah. I'm surprised we made it through. We're on the other side of it now. But there were times where my husband, he and I actually are a good pair, but he did not acknowledge it. He didn't know how to handle it, and he kind of went off to work. Yeah, he was not there. So I really did feel alone in this journey for a long time. He apologizes about it now, and hindsight is always 2020, and it was never that he didn't love me or he didn't love my children, because he loves my children like crazy, but it was about not knowing how to handle it. And his way was avoiding it, so it was hard. And I think he didn't know what to believe either, because these are medical doctors and they're telling us, go see a psychiatrist. So he was like, well, maybe we should go see a psychiatrist. Which would infuriate me, because I'm like, they have migraines. We're not going to go see a psychiatrist. And they would always ask him all the questions, are you being bullied at school? Is your mom pushing you too hard at school? And you feel all these questions? It was never any of that. They had migraines from Lyme disease. But, yeah, it was very hard on our marriage. And I know that there's a lot of people that they don't make it through. [00:40:45] Speaker C: Right. And that's why I wanted to ask, just because you haven't been through the journey personally, but I know a lot of people that go through Lyme by the time they get better, if and when they get better, they don't have a marriage anymore. And it happens so many times, and a lot of times you don't have friends anymore, you lose your friends. So I could just imagine you and your husband going through this with four children, just the stress it would have on you, too. And again, I'm not the chicken noodle soup book or whatever it is, but men are totally different than women. I get that. And this was a perfect example. I think sometimes the mom is like, the mama bear, like, no, these are my kids. I'm going to figure out what's wrong. And the husband's like, I don't know what to do, so I just won't say anything. Right? [00:41:40] Speaker D: Yeah. And that's definitely what kind of happened with us. And it's hard. That's hard. And I always say, too, I feel worse for someone that doesn't have their mom there. My children had me. I was there to pick up medicines, to turn on their heating blanket so they could get up in the morning, those kinds of things. Somebody that doesn't have a mom taking care of them, or they are a mom, and they have Lyme disease, and they're trying to take care of kids. Those are the people I feel. My heart goes out to them. Everybody needs an advocate, especially when you have a Lyme disease. It's just a very devastating disease, and it hits you in so many different ways. [00:42:27] Speaker B: How did a day look like for you? I mean, here you have four children dealing with Lyme. They're going through parksing, they're on antibiotics. So what did the day look like for you dealing with all of that? [00:42:43] Speaker D: Well, so, for Rose, she never got out of bed, so she missed probably 60 or 70% of her school year, 7th grade, 8th grade, 9th grade, and 10th grade. So she was diagnosed in 8th grade at that point, 7th and eigth grade, she was at a small christian school, so sometimes the kids would let her dial in and listen. She'd listen to the lecture so she could try to keep up with school, but she really missed a lot of school, and that was hurtful for her, too. Her freshman year, we got a 504 plan for her, which we had to fight for. She actually had to start failing classes before they would actually look at her medical records and give her a plan. Where she could be successful. But because she did miss so much of the school year, they made her drop out of things that were cumulative, like Spanish. You can't keep up with Spanish. You've missed the whole month of February. We can't let you come back in. You won't know where we're at. So they made her drop out of those types of classes. [00:43:48] Speaker C: Can I ask you, for the listeners out there that have children going through this, can you explain what this 504 plan is? [00:43:57] Speaker D: So a 504 plan, and it might be different state to state. So in Illinois, it's called a 504 plan, but it's a medical plan, and you have to go in with a doctor's note, and our doctor talked about Lyme disease, and then you come up with a plan with your counselor that's going to actually help your child make it through high school. So she was at the public school. So one simple thing that we put in her 504 plan was to have an extra set of books, a second set of books, so that she could keep books at home, because we never knew when she was going to all of a sudden take a turn for the worse. And if she didn't have the right book, that's something silly and something easy. But it helped. She got extra time to turn in stuff. Her teachers expected her to sometimes have long absences. She was very frequently gone in February and April and actually January and February. Typically, she was gone almost the whole month. Rarely went to school at that time, so it's hard to catch up. So the 504 plan also allowed her to have some tutors come to the house, which didn't really work, but there was just some different things that they did to try to help her get through high school. [00:45:16] Speaker C: That's really good to know. I know that they have plans for people that are in public, regular school, and this has nothing to do with Lyme disease, but that struggle. They can have certain things in place where they can have extra time for testing or they're not special needs, but they just have a little bit more struggle. And so it's good to know this, because there's probably something, I would think, in every state, something along those lines that somebody could look into to find out if they're needing some extra assistance or modifications for their children. [00:45:56] Speaker D: Yeah, definitely. I just don't think it's called a 504 plan in every state, but it's a medical plan and you work with your high school. We did that also when Rose went to college and the very first year I was worried that she might have a long absence or that it might come back. And so we set up a couple of things with the college as well. So some colleges also have that as well. But one thing I do want to say to give people out there hope is that we never thought Rose was going to go to college. Never. She never got out of bed. She didn't walk right. She thought she had friends, but she didn't have friends. She'd been gone for so long. She just didn't have a. I mean, I just remember my heart. So I just want to say that last year in May, she graduated from University of Kansas, and after going through all this Lyme disease treatment, and this year, she is a first year law student at University of Denver. So there is hope with treatment and diet and all of that, it can help, especially for the young, for young people. [00:47:10] Speaker C: That's amazing, Rose, go, Rose, go. I love it. Wow. [00:47:17] Speaker B: That's incredible. [00:47:18] Speaker C: So were there any other things that you did? I know that you did different detoxing things, but as far as with your Lyme doctor, did you only do antibiotics with your. [00:47:29] Speaker D: No. [00:47:31] Speaker C: Can you tell us about some of the other things you did? [00:47:34] Speaker D: So my kids really started to push back. We had switched up to a different facility after our different doctor's office. We'd been going down to Columbia, which was such a long hike, and Wisconsin is an endemic state, so Wisconsin has quite a few. Not enough, but they have more Lyme disease doctors than Illinois did at the time. So we started going up to a practice up there. But they really believed in the three antibiotics at one time, and my kids were pushing back. They're like, we don't want to take all the supplements anymore. The three antibiotics make us feel horrible. They just didn't want to do it anymore. They were really fighting. So I had been reading about ondomed, which is a german technology. A, you know, Dr. Chris had talked about it, and some of these other books have talked about this, but there's not that many places in the United States that offer ondomed. Well, just so happened that Geneva, Illinois, my hometown, offered ondomed. So I thought, let's try it. It's biofeedback. I didn't really completely understand it. I know it was similar to an idea of, like, a rife machine, but it was a german technology. The Germans took over this technology and really developed it when we developed antibiotics, and they were developing some of these other technologies. So I thought, why not? Let's try it. What do we have to lose. So we saw a practitioner here in Geneva and she did ondomed, and then she also did the singlet oxygen. And the very first time that Rose did it, we had to stop. So Rose turned really gray and became very unwell looking. And the practitioner said, you know, we're going to stop. I'm too worried. I don't know what's going, uh. So I took Rose home. She was feeling very sick. She laid down, but that night she had a period of wellness that I had not seen in years in her. And I thought, well, maybe this worked, I don't know. So we tried it again the next week, similar things happened. She reacted pretty strongly to it, turned pretty, and so we didn't make it through the whole and. But anyways, we started doing these sessions once a week, and this was her junior year, and I feel like this is one of the things I can say that turned Rose around. So Rose that year grew a lot. She was very short before and started growing. She started going back to school. She played a sport and started to live her life. And we still didn't think at the end of her junior year, I remember my husband and I talking, saying, gosh, I don't think so, but maybe she'll get even that much better next year. Maybe we'll look at colleges, maybe she'll be able to go to college. And sure enough, we kept doing the ondomed, and I just feel like that was something that really helped Rose. [00:50:44] Speaker B: That's incredible. And the other children during this, they responded faster. Where were they at? Alongside with Rose, I mean, sounded like she had obviously the toughest symptoms. It was the hardest journey. [00:51:02] Speaker D: Yeah, she did. [00:51:04] Speaker C: I think it's because she's the one with the tick in the head that was supposed to poop out. [00:51:10] Speaker B: Yeah. And she just didn't. [00:51:11] Speaker C: Rose didn't poop it out. [00:51:12] Speaker B: No, exactly. [00:51:13] Speaker C: Sorry. It is not funny, but it's just, I mean, you got to laugh or you'll want to murder some of these doctors, right? [00:51:19] Speaker D: Yeah, absolutely. So I think JT, he started treatment about eight weeks after being bit, and I think he did a two year treatment, and because I think they caught that earlier for him, he had less symptoms. However, I just had all of his blood drawn this last summer, and it does show that some of their co infections have popped up. And I'd seen some symptoms, so I think the Lyme disease is gone, but I think some of the co infections are still there, and this is several years later, so I definitely want to keep addressing that with him. But he has a life. So I feel like everybody's. He's got. He's got a life, he's healthy enough, he goes to school, he's living his life. That's a win, in my opinion. He may always have to fight this and always have to be aware of Lyme disease and some of the co infections, but right now it's a win for him. So I feel like he had a little bit better situation. And then my third daughter, Mary Kate, she still fights, like, some rashes type things and some digestive issues. And she's actually a senior at Auburn and she's pre med, so her plan is to go to medical school. And I imagine that all of her experiences have really influenced her in that way, too. So she had the great opportunity to intern for a Lyme disease doctor in Chicago last summer, and I hope she continues on. [00:53:01] Speaker C: That's incredible. It sounds like you've raised some pretty amazing children, for sure. [00:53:08] Speaker D: Well, Lyme disease sure has shaped our life, that is for sure. [00:53:15] Speaker B: And how did you take care of you during this journey? Because obviously this is full time, 24 hours, seven days a week. How did you manage to get through all of this? [00:53:31] Speaker C: Lots of tequila. [00:53:35] Speaker D: Yeah, for sure. Yeah. I think I was pretty stressed. I wasn't the best version of myself for mean, I've learned you probably didn't. [00:53:47] Speaker C: Take care of yourself is kind of what I'm gathering. So let me rephrase that question, Dr. K, please. What should you have done going through this? What are good tips for a caregiver or a parent helping somebody go through this? Because you do. If we aren't well, we can't help other people and we've got to take care of ourselves. So what would be some good tips that you learned? [00:54:14] Speaker D: I think knowing who to trust and who you can confide in, you cannot confide in everybody, and especially if you're taking care of children, if you have that mama bear instinct and if people don't believe you, and that's just really hard. So finding a good support group that does understand about Lyme disease and can understand some of the weird symptoms that you're going through, I think that's important. I currently do a lot of deep breathing that stemmed from that time. I love to do the EFT tapping for releasing some of the anxiety. And are you aware of tapping? [00:54:56] Speaker C: Yes. Tapping, breathing, all that's amazing. [00:54:59] Speaker D: Yes. [00:55:02] Speaker C: And simple things that you can do at home and something that's actually free along this journey. Right? Yeah. You can do it anytime. It doesn't take long, and it really does have some amazing benefits. [00:55:16] Speaker D: Yeah. Especially with the tapping. You can find a lot of videos that can help you with anxiety. And I feel like after I do tapping, I kind of work through some of my issues. And once you work through it with yourself, it does release some of the emotion from your body, and it's just very emotional. I don't know that I have great tips, to tell you the truth. Try to eat healthy and drink enough water and try to get some exercise because all of that keeps your brain clear. And you really do have to stay clear for your kid as they're going through this. And my friend used to call it detachment. She's like, I have to detach from all emotions today. And she said, I imagine that's what maybe doctors feel like as they're treating their patients. Sometimes you have to detach so that you can just have, like, a logical view of things and not an emotional one. But I'm not sure that's really advice. I'm not sure that's something that's helpful. [00:56:14] Speaker C: I don't know. I think it might be because sometimes when your emotions are too involved in it, I think that. I don't even know how to say this. [00:56:32] Speaker D: You don't see things clearly. [00:56:34] Speaker C: Yeah. Or you would have done something. You would have been more stern about something or stricter, or thought of something different had you been treating a child that you didn't know versus your own child. I don't necessarily think that would be a bad thing. Not all the time, obviously. Right. But there's those days where you're just like, okay, I'm overloaded. I'm done. I can't do this. I'm just going to go in and be doctor today. I'm not going to be a mom today. I'm going to be the doctor today just to get through it. So, I don't know. I guess it could go either way. [00:57:14] Speaker B: Yeah. It is hard when your children going through their perksing. It's so hard as a parent to see there's so many emotions when you see your child suffering like that and kind of emotionally, you're thinking, well, I can't let my child go through this. But logically, you know, you have to get through this in some fashion to be able to see the other side of it. So it's kind of a mixture between both and emotionally. Obviously, you need to be there with your children. You can't just be cold with your children. You got to kind of feel the emotions with them. But at the same time, you have to logically guide them through the journey. [00:58:01] Speaker D: Yeah, I think when you detach, it's not like you detach for long as a mom, you detach for 15, 20 minutes and try to just focus on something else, maybe. And I did a lot of Epsom salt baths myself. I really enjoy an epsom salt bath. It's a great way to relax and detox. And the magnesium in there does help you feel. It helps you relax your body. So I guess that's a tip, another tip that I might give to people that are going through it with families. So I have multiple children and trying to keep multiple symptoms straight and multiple. We had multiple different supplements that everybody was taking and different schedules, and that was hard. But what I did was I kept a notebook. Everybody had, like, a daily planner on the table, the kitchen table. So we'd sit down at dinner each night, and everybody was to write a symptom. And I already had their medications listed for what was going on, but if they had a symptom that was really acting up, they were to write it. It didn't need to be a sentence. It could have been one word. But that was really helpful for me to be able to take those journals, because things were so mixed up with the four children and all the details that I could take them with the child and then we could talk to the doctor. So that was helpful. What was written in the child's handwriting? And then one other thing that I did was color coded note cards. So I would everybody get your note card out with your morning supplements or morning medications, and then everybody'd have their own note card. That way was the only way I could keep everything straight. [00:59:50] Speaker C: That's a great idea. No, that would be a great. I mean, when I was going through my journey, I couldn't keep it straight, and I only had to worry about me. I can't imagine. And then when they wanted to add something and change things, I'm like, oh, my gosh, this is too much for my brain. And I just had post it notes everywhere. But, yeah, the color coded cards like that, that's a fantastic. [01:00:12] Speaker D: So. And I kept those at the kitchen table, too. So just because it's out in center and you can grab it easily and use. Yeah. [01:00:23] Speaker B: Well, Terry, there's such a powerful story. What a warrior to fight for four children. It's hard enough with one, but then seeing all four of your children going through this, like we said, with that, it's not like you have a moment of peace and just kind of relaxing and thinking. Now I can just kind of settle down, and it's just always something. It's just amazing. [01:00:55] Speaker C: Yeah. No date nights, no wine in the bath night. No, none of that. Wow. Just incredible. And you did a fantastic job sharing with us, keeping your children separate. I feel like we know them, and we know Rose. Rose. Go, Rose. [01:01:13] Speaker D: Yeah. [01:01:13] Speaker C: But, yes. Thank you. Just from the bottom of my heart, thank you for being just the best mom to those kids. They wouldn't be where they are today without you. And I appreciate everything you're doing in the Lyme community because of your children's journey, because we need these voices heard. We need to tell our stories. We need people to understand that they're not crazy and that there is hope. And Rose is our perfect big example of that. So just never give up. Keep that hope, and just thank you. Thank you for sharing you guys, too. [01:01:50] Speaker D: For doing what you do. I really appreciate that you have a podcast that goes out to so many, and I think that's such a wonderful way to get the message out. So thank you for having me, and thank you for everything you guys do too. [01:02:01] Speaker B: Thank you so much. [01:02:02] Speaker C: Thank you. [01:02:03] Speaker B: Thank you. [01:02:11] Speaker A: The information this podcast is for educational purposes only, and it's not designed to diagnose or treat any disease. I hope this podcast impacted you as it did me. Please subscribe so that you can be notified when new episodes are released. There are some excellent shows coming up that you do not want to miss. If you're enjoying these podcasts, please take a moment to write a review, and please don't keep this information to yourself. Share them with your family and friends. You never know what piece of information that will transform their lives. For past episodes and powerful information on how to conquer Lime, go to integrativelimesolutions.com and an additional powerful resource, lymestream.com. For Lyme support and group discussions, join Tanya on Facebook at Lyme Conquerors mentoring Lyme warriors if you'd like to know more about the cutting edge integrative of Lyme therapies my center offers, please visit thecarlfellcenter.com. Thank you for spending this time with us, and I hope to see you at our next episode of Integrative Lyme Solutions with Dr. Carlfell.