Dawn is a 50-year old married woman with three children. Her Lyme story began not with her kids, but with herself. On a river rafting trip she remembers being bitten, but thought it was a spider bite instead of a tick. Throughout the years she began having symptoms: not being able to think very well, chronic fatigue, a lot of gastro intestinal issues, anxiety and depression. Along the way she was misdiagnosed with MS, Lupus, Chronic migraines and psychological issues. Every year she got sicker and sicker. Symptoms began to present among her three children as each approached puberty. They were diagnosed with ADHD, memory issues, and in spite of being bright children all had difficulties concentrating on their homework. It was at this time that she found out that Lyme disease and its co-infections can be transferred from mother to child and that was when their journey began. They all went on heavy antibiotic treatments and experienced the many side effects that go along with that. Every one of them went on a gluten free diet. She emphasizes how the symptoms among her children and herself could change from month to month and week to week. It’s impossible to know what you will be met with each morning that you wake up. Dawn talks about Neuropsychiatric symptoms are the most difficult to deal with and how she continued to remind herself “that it is the infections causing all of this.” She says you “just can’t understand this illness until you’re in it.” She said she has been blessed that her husband is successful enough to afford the treatments everybody has needed, but also adds that it has put a significant strain on the family. She reminds us about the difficult path to recovery and how one comes to appreciate that the body can heal itself.
My name is Dawn, and I just recently turned 50 years old, which was a milestone for anyone. I have three kids. My oldest is Sean. He’s 18, and he just went away to college this year. My daughter is 15. Her name is Ava, and she’s going to be a sophomore. My youngest is Mason. He’s 12, and he’s going into the seventh grade. Our Lyme story began not with my kids, actually, with-with me. I believe I was bitten by a tick on a river rafting trip on the American River. I didn’t know at the time that I was bitten by a tick. I thought I had a spider bite with a rash that looked like a spider had bitten me.
So throughout the years, I started having symptoms: not being able to think very well, low energy, a lot of gastrointestinal problems, anxiety, depression. I had been to many doctors, as most Lyme patients have, and was dismissed. Diagnoses of possible MS, possible Lupus, migraine headache-chronic migraines, anxiety, depression. There was no one answer anywhere. It was just bits and pieces from different doctors.
Every year, it became less livable. It progressed. And so I noticed I had trouble with my voice, which I-I continue to have, and trouble finding the correct words. Being just exhausted after a full day, and not knowing why. My youngest seemed to have problems from his delivery. He, uh, was born with a cleft lip, didn’t eat very well, didn’t latch on very well, very colicky and irritable. Once he got to school age, he was having some problems, sort of like ADHD.
I couldn’t have fathomed that my symptoms were causing my older son’s symptoms until I was diagnosed with Lyme disease after f-having it for 15 years. That was really rough, because I knew that my kids had it. I just, I knew. And nobody could tell me different. My oldest son started having problems in school, memory issues. Really bright kid, uh, but didn’t ever want to do homework, and I couldn’t understand why. It was too much for him to concentrate. And eventually he started having problems with friends because of his mood swings. And that was when we found out that Lyme disease and their co-infections can be transferred from mother to child. And that was when it began, right then.
Having to care for children with Lyme disease, and also having it yourself, I can’t describe it. Physically, emotionally, psychologically, there was nothing that prepared me, nothing that I could even imagine like this. My youngest has missed about-equivalent of about two years of school. He wants to go to school, and that’s-that’s the frustrating part, he wants to go, loves it, loves his friends. But every time that we would go back, he had to make a whole new set of friends because they’d kind of gone by the wayside. And that was really hard to take, being a mother, because you want your kids to succeed and to thrive. It wasn’t happening. I’m grateful, though, that not all of us were as sick as some of us. I guess it could be worse.
So, with my oldest son, Sean, he had had symptoms of Lyme disease, I had now figured out, for years. And we got him tested and he tested positive. We started treatment with him, which consisted of antibiotics and some herbals. He seemed to handle it okay, but it did seem to make his cognitive problems worse, because of the flare, or when you’re killing the bacteria, you can have a Herxheimer reaction, and his was brain fog and-and really nothing else. And so he was having a really hard time in school. At that point I couldn’t see what good this was doing, you know. It seemed like he was worse, and that was when we tested my other two kids, and they came back what would be positive.
My daughter w-didn’t show any sign. She showed some fatigue, and then we treated her. My youngest, I didn’t feel like he had any symptoms, but we did-made the decision to go ahead and treat him, because we wanted to make sure that it wasn’t in his system, and that he was, you know, t-taken care of in that respect. So our treatment protocols were similar. We went on large amounts of antibiotics. Our doctor at the time was very antibiotic-heavy in treating Lyme disease. And we had all of the side effects that go along with that: the gastrointestinal problems, we had to keep that at bay; and we’re taking large amounts of probiotics and low-sugar or no-sugar diet, no gluten, no dairy. We were also on some herbals for specific co-infections. One is [albizia?], and we were on cryptolepis for that one, and bartonella, um, that one actually we took antibiotics for. But they were very similar. They were toned down for my youngest, because at the time, he was six years old and we didn’t really want to, you know, give him too many antibiotics because he was so young.
We had out pillboxes with everyone’s name written on them. And I would fill the pillboxes every Sunday night. And they consisted of antibiotics; probiotics; supplements like vitamin D, zinc, a multi-vitamins, things that are going to stus-to support the system. Giving my children so many pharmaceutical medications was really disheartening. But at the time, I was listening to my doctor and decided that this was the best course of action.
Well, someone once said to me that families that have Lyme disease become extremely close, because they’re at home a lot together. And we are, and we’re at home a lot. There are days where one or two of us don’t feel well enough to go out. I do most of my cooking at home because of, uh, the food intolerances, food allergies. I don’t think anybody really knows what kind of strength they have until they go through something like this, but I don’t know what else would be like this. Nothing could have prepared me for a disease that would take so many things.
Symptoms can change from day to day to week to week, and I know it’s almost like I-I don’t know what I’m going to be met with in the morning, you know, either from my son or myself. Neuropsychiatric symptoms, those are the hardest to deal with in my opinion. The mood and the anxiety and my oldest son had auditory il-hallucination at one point. And I’ve had auditory hallucinations. Just to have some type of normalcy, I just have to tell myself this is the infections, this is the infections. I will call my doctor, “How do I get past this one?” You know, “How do you get us to next week?” There’s a lot of different variables at play: you know, calming the system, bringing the inflammation down.
I have what I call my bag of tricks. One thing that we do a lot of is turmeric. It seems to bring it-down the inflammation quite a bit. Epsom salt baths are another to bring the inflammation down, and bring magnesium into the body. Binders, um, things like activated charcoal, something called ZeoBind or Zeolite that absorbs the toxins in the gut to help bring it out of the body. So, in Lyme, everything’s messed up. And so, if you have some toxins in your body, and you’re trying to get rid of them, those pathways are often blocked, and your body needs a lot of help to get them out. We do also ha-use homeopathic drainage remedies to help the lymphatic system deal with all the debris and things like that.
I try to get my youngest son out and exercise, if it’s only five minutes. Just walk with me for five or 10 minutes. It’s not always successful at that. My older son doesn’t seem to have the same issues with getting the-the debris out of his body, other than the brain fog. We also have him on something called cholestyramine, which is actually a cholesterol-lowering medication that kind of sweeps the debris out of the body as well. And he’s on that right now, and I-I think that’s beneficial for him. And my elder son is in college now. And he’s really impressed me. He’s come up against some roadblocks, and he’s had some illness, which is typical for being in a dorm. He’s had to drop some classes because they were too much for him. His workload needs to be a little lighter than the average student, just to be able to manage his life, you know, his health.
My younger son, he missed half the yea-this year. But we just kind of say, you know, “Y-you just be at school, just be with your friends. You will learn. Y-you will. It doesn’t have to be on a timetable. You need to be healthy enough to-to learn.” And we just take it as it comes, because there’s no planning. I thought… he was back in school at fifth grade, and I thought, “Okay, well, you know, we’re over the hump.” And sixth grade, went to school and, after the holidays, he started to kind of go downhill again. So, like I said, I recalculate. I do it again. We just do what it takes, and that’s how it has to be.
You don’t know any illness until you’re in it, you just don’t. Nobody that I know wants to have their kids lose their childhood. Nobody wants to lose their joy in whatever stage of life you’re in. No one wants to be home all the time, you know, wondering how are we going to afford this treatment now. I used to worry about it 24/7. How are we going to do this? I-I’m not working. My husband’s an engineer. He makes a good living, but, you know, this is above and beyond what we can afford. And I have learned to let go of it because somehow, somewhere, you always find the money. It becomes p-a way of life. You just, you change your lifestyle. You just do. Our vacations are very short and not very glamorous. But at least we’re having vacations now.
The tests are very expensive. One test can cost a thousand dollars. And that’s just a test, that’s not even a treatment, that’s not even the medications. At this point we are, after six years of treating five family members and then now we’re down to three, the advice I would give to somebody that is newly diagnosed with Lyme disease, whether it’s themselves, or their children or the whole family, is you’re going to be overwhelmed. There’s just no getting around it. And you need to take small steps in the right direction. When we were all really sick, I just took time out of my day, I would purposely sit in my family room and look outside and just see something beautiful. And it could be for two minutes. Just the wonder of where we are right now, because your life is still precious, you know. It’s just really, really hard right now.
You’re not going to always be positive. Everybody always says, “Oh, just be positive.” Well, n-you know, reality sets in. Just keep going forward. And if you can’t, just be still. Just experience what you’re experiencing, don’t deny it. Just be able to make some sense of it yourself. What was helpful for me, and is still helpful for me is, it’s the infections, it’s not you. Especially with the psychological issues, and the-the behavioral issues, it’s not you. This is the infections talking. This is the parasites in your gut talking, and they’re there because of you compromised immune system. But once we get that back on track, you’re going to move forward.
There’s so much to look forward to. There really is. And I would just tell people that you have caught something, maybe you caught it a little too late, you know, maybe it’s going to be rough for a while, it’s going to take some work, but please don’t ever think that your body can’t heal itself. Our bodies are designed to heal themselves. I mean, you just need the right tools. And that is so key to this. Everybody has a different set of tools, and they are sometimes elusive, they’re pieces of a puzzle. Find them. Keep researching. Not too much, don’t research too much. Have time for your life. But really keep in perspective where you’re going, because you’re going somewhere, and you will get better. It’s just finding that path.