Camille is a 52-year old married woman and a mother of three daughters. While Camille’s story will sound hard to believe it is not unique to the Lyme community. Not only has Camille had to deal with a Lyme disease diagnosis, but so have her husband and three daughters. She begins her story by describing the arduous process of getting a proper diagnosis for her family. For years they received every diagnosis under the sun even to the point when her husband was misdiagnosed with ALS. She says her “awareness of Lyme disease was that it was only found on the east coast”, only later to find out that Lyme disease is everywhere in the United States. One of her friends said she knew a man who was diagnosed with ALS and it turned out he had Lyme. Camille connected the dots and finally found a Lyme literate MD who said he had never seen anything like this before. The entire family did all of the available blood testing and all were diagnosed with late stage Lyme disease. Unfortunately, that was just the beginning of a long treatment journey for Camille’s family. Her daughters had a very difficult time dealing with the antibiotics in spite of the family’s efforts to do all of the appropriate detoxification work to help the process. Camille speaks to the importance of lifestyle changes and using all alternative treatments in her search for answers. All of her daughters, at one point or another, missed a considerable amount of school. In fact, one of her daughters was unable to go to school for almost ten years. Her husband Scott, in spite of significant neurological issues with his legs, has been incredibly strong for his family and continues to go to work each day. Sometimes that means bringing his IV antibiotics to the office. Camille talks about the stigma that comes with Lyme disease, because many of her friends had a difficult time understanding what was going on under her roof. Even though this has been an overwhelming experience with Lyme disease, Camille remains hopeful about her family’s future. One of her daughters is doing remarkably well and heading off to college this year. Another daughter is back in high school and her husband continues to work everyday. Her youngest daughter recently relapsed, so there are challenges ahead for Camille. However, as the strongest of women, she will keep searching for answers to battle this disease for her family.
My name’s Camille and I’m 52 and I’m a mother and a wife. My husband and all three of my daughters have Lyme disease. My husband was diagnosed about six years ago. My daughter, Bronte, was diagnosed about five years ago. My daughter, Isabelle, was diagnosed about seven years ago. I was diagnosed this past year along with my youngest daughter who’s ten.
Bronte is 21 years old. She was born sick. It took us 15 years to discover she had Lyme. Once we found out she had it, she did treatment. She missed months of school, but after a few years of being on treatment she did remarkably well. She got into college. Went the first year, had a relapse, had to come home from college for a semester. And I’m happy to say now she is so far off treatment and doing remarkably well.
Isabelle is my middle daughter. She started showing symptoms in fifth grade. She’s 18 now. We had lots of misdiagnoses and if it weren’t for her I really believe we probably wouldn’t have found out that our whole family has it. She was diagnosed in sixth grade. She’s 18 now. She’s still really sick and she’s been sick for eight years. She had to be home hospital for years. She couldn’t go to high school; she went part of the time. She was able to graduate on time, go into all of her colleges having three to five seizures a day. She’s had years of IVs and two years ago started having seizures. And then after graduation, this is a couple of weeks ago, she started hallucinations. So she had to have her PIC line put back in.
My youngest, Abby’s ten and she was the healthiest when she was born. And I believe with Lyme, symptoms for kids usually start to come out pre-puberty. That was about the same time Bronte and Isabelle started showing symptoms, but we didn’t know back then. Abby missed a lot of school this year. We had her tested and we got the call in January that she has it. I had a healthy pregnancy, everything went great, well. And our oldest daughter was born; she’s 21 now, came out screaming and didn’t stop. A nurse at the hospital said, “I’ve never seen anything like this.” They ran some bloodwork on her and said she had some sort of infection and she was given shots of antibiotics. She still was very restless at the hospital and so the doctors were concerned, but they ran tests and said she should be fine. From the minute she was born, she would have moments of smiling like babies, but screaming six to ten hours a day for over two years.
So my husband and I were in the doctor’s office sometimes every week for the first two years of her life. The doctor said, “This is probably the worst case of colic I’ve ever seen.” So we were seeing specialist after specialist and as a new mother I was looking everything up. How long does colic last? I think they said three to six months. Swaddle them, give them the colic drops. We did everything and this was not just a couple hours every day, this was six to eight hours, every day.
We started saying to our doctor, this is more that colic. And he said, "You know I still think this is just a really severe case of colic".
I’ll never forget on her first birthday my husband took the day off from work and we were going to take her to the zoo. And she had just turned one and she kind of fell over on her stomach pulling her legs up, screaming. And so we brought her into the doctor and there was another doctor there and she started doing a stomach exam and my daughter, Bronte, passed out in front of her. And she said, “That looked to me like this was a seizure.”
So we had to see a neurologist. We did the brain study and the doctor after that said, “Even though I don’t see any seizure activity, I’m still very concerned. There is something wrong; I don’t know what it is”.
So from then, we went to allergists trying to rule out food allergies. And all through elementary school she started to developing, as one doctor stated, one of the worst cases of anxiety she’d ever seen. And then learning disabilities and it took us to she was fifteen to find out that she had Lyme.
My husband, about eleven years ago, started feeling very weak on one side and falling. He would just walk down our hallway and fall. So we went through a full year of misdiagnose. They thought he had all different things and finally the doctor diagnosed him with ALS. Went to the ALS clinic and after the testing they diagnosed him with PLS. And at that time, my middle daughter got diagnosed with Epstein-barr, chronic fatigue and a couple people came to me and said there’s no way you’re talking about very different serious illnesses that these can’t be related. Two of my friends came to me and said, “Have you ever heard of Lyme Disease?” And I said, “Yeah the back east Lyme, Connecticut.” And they said, “Yeah, but it’s everywhere.”
One of my friends said she had met this man who was diagnosed with ALS. Turns out he had Lyme. Fortunately we were able to meet him in the hospital and he told us his beliefs on Lyme and we started connecting dots thinking, “Oh my God. Could this be what our whole family has?” And at first I understand why doctors have a hard time because there’s not proof yet of certain things. But when you’re in my shoes and one person, and my whole family is sick. And I feel like I’m trying to be honest sharing all their symptoms and being told “No, this is what this daughter has, this is what that daughter and this is what your husband has”. And in my gut I knew that they were wrong, that this had to be something that we all had together.
And I am so thankful for a pediatrician because at first she said, “CAMILLE, I don’t know. The medical community doesn’t get trained that much on Lyme.” But then she took the time to listen to us and she saw each of my daughters and my husband would come into visits. She said, “I’ve never seen anything like this.” And she said, “I want you to know that I’m behind you.” And that was life changing.
My pediatrician said, “You know CAMILLE, I’m going to do some bloodwork on Isabelle.” And she called me and said there is a marker in Isabelle’s testing for Lyme. And the she said, “Have you been out of the country?” And I said, “No.” And she said, “It’s very strange, your daughter has a very unusual parasite. I don’t know what all this is, but I see your family and I’ve been watching you guys for years and I’ve never seen anything like this. Why don’t you go get more bloodwork? I found a Lyme literate doctor.” Which was like a hallelujah moment.
And I’ll be the first to admit it, when someone said Lyme disease I kind of looked at them and my initial reaction was a back east disease. The Lyme literate doctor told me, “Yes your daughter has Lyme, but she also has Candida. She has parasites. We can’t even treat her for the Lyme until we treat all of these other things”.
The Lyme literate doctor started to ask very impertinent questions about the history of our family. And I’ll never forget one of Isabelle’s appointments… You know the poor Lyme doctors because they’re still learning, the world is still learning about this disease… and I’m a mother and so I’m wanting answers; I want her well. I knew she was so sick and our doctor’s looking at us and my husband walks in. At the time my husband’s very weak; he’s got his two canes. And the doctor looked up and said, “What’s going on with you?” And then he said, “How many more kids do you have?” And then we started talking about Bronte. The doctor right then and there said, “You know we are learning a lot and I think it’s fascinating that you were diagnosed with this and that you’re telling us that your other daughter was born sick and have been dealing with things with her for fifteen years? I think you guys need to all get tested.”
Our doctor did so many tests on my husband. There was a urine challenge, there was one where he had to do massive antibiotics and everything was inconclusive. And again I admire my Lyme doctor so much because he just said, “Scott, I look at your family and you’re testing inconclusive and you’ve probably had this for a long time. I say we just try you on treatment and thank goodness that he did because my husband at that point falling so much, breaking ribs. He fell in our garage, five teeth coming out. He looked like he had ALS or PLS and this close to being in a wheelchair.
Then I thought, “Yeah we’re going do the Lyme treatment.” And little did I know what that would entail.
I didn’t know that Lyme ‘causes so many different things. You start seeing other people come in and you see some are on PIC lines, some are on ports. What I like about our clinic is that they had a naturopath there, a main doctor and then another doctor. I would go to one appointment thinking, “OK whatever this doctor tells me is going to be the same from Bronte, Isabelle and Scott. What I started learning is that each case is so complicated. As a mom I still feel this is the hardest thing about Lyme and being a caretaker, is that you are always told when you have children, if you don’t have to put them on antibiotics, don’t. The craziest thing is in our house, it literally looked like you were in a pharmacy.
And so I would go to one appointment thinking okay whatever this doctor tells me is going to be the same for Bronte, Isabelle and Scott. And then you’re watching your middle daughter and you think she’s going to die and we tried all different things. We met with the naturopath doctor. It did seem like for Isabelle, that a PICC line and the hours of IVs a day, was the best for her. And our doctor was very honest. He said, “Camille you know, you’ve got to be very brave in this. Do not succumb to it because it will eat you alive. You just focus on taking care of your family. It’s going to be different for each person and this was the hardest part to hear, because my middle daughter again and my husband were so sick. He said it’s only going to get worse before it gets better. Once you get the antibiotics in, it’s going to wake up the bugs.” My daughter was suffering so bad that I think deep down she wanted to die. I didn’t tell her that. I just said the treatment’s going to be rough and the antibiotics and the supplements are going to create things in your body that are going to ‘cause more symptoms.
Isabelle probably stated first, and then Scott and then Bronte. All treatments were different. And Isabelle at that point was so sick, she was bedridden. Kind of lifeless on the couch just telling me, “I can’t do this mom, it’s so painful.” She would be almost howling like a wounded animal telling me that she felt like she was being stabbed everywhere and hot oil was being poured down her throat. And after six months to a year, at one point because she’s so strong, she just said, “I can’t do this. I am in so much pain. I feel like someone’s peeling my skin”. We would do Epsom salts bathes, we would do everything.
My husband would bring his IVs to work. I have a picture of him in his office, six hours a day on his IV. The most joyful, loving, easygoing guy never complains and throughout this has rarely ever complained. I would come home, in the beginning of his treatment, from school and he would be in a PICC line and I would say, “Where’s daddy?” and they’d say, “He’s not feeling good, he’s in the bedroom”. And I’d open the door, all the blinds were shut, he could barely open his eyes. He said, “I’m in so much pain Camille, I can’t even talk.” I remember so many times at night when I would have Isabelle on an IV; Scott on an IV; Bronte’s doing orals; they all have different drops. And there was a couple of nights where I have them all on the couch and they all told me that they thought they were going to die ‘cause they were in so much pain.
Fortunately my daughter Bronte, after a couple years, got through her treatment and she’s doing remarkably well. And my husband works every day. He did an experimental treatment last May and although he’s still handicap, he has not been on any treatment since. I think one of the neatest things about our doctor is almost from day one he talks about how you have to tackle this disease. You have to have an open mind. There are some really interesting things our family’s done and we did this magnetic testing over the body. And our doctor said that I find if you cannot be open-minded, you’re going to shut a lot of doors.
And my husband got a name of this great acupuncturist. That was amazing. And I liked that our Lyme doctor said, “By all means. This is something you want to do. It looks like you are getting a little stronger with this. Do it”. I started doing a lot of research and qi gong was presented at our club. And I talked to the teacher that worked there and she had told me how sick she was as a child and how she believes that qi gong healed her. It’s very slow movement. It can be very spiritual for people, and she believes it opens you up. Well the minute I heard the word “opens you up” a light bulb went on for me for Isabelle. That for some reason it looked like Scott’s and Bronte’s body accepted the antibiotics and for Isabelle it seemed like it worked a period of time but she was getting bloated and I kept thinking something seems blocked in her. Of course she didn’t want to go with me because a lot of elderly people do qi gong. She did it a few times and said, “You know mom, I’m the only teenager in there, but you know I’m actually feeling better”. She got something from that and we were super excited and then her seizures started.
So with Lyme you have to be on all the time. If this doesn’t work then you got to find something else. AR Testing, so we started doing that. They take the medicine that you’re taking and take some crystals and they put it over your body. And if you are just an outsider, you are going to think that this is crazy. Well when you are fighting for your kid’s life you are going to be open-minded. I think one of the hardest things as a caretaker, when you are dealing with multiple symptoms of a chronic illness, is that you’re one person and everyone’s needs are different. My husband is handicap; I had to deal with that. He used to be this big athlete. He still has two canes, his body became so weak. For my daughter Bronte, there were a few months that she just couldn’t exercise and that’s when she was at her worst. For my daughter Isabelle, we have tried everything. And the hardest part about her case is she would start doing qi gong, all of a sudden her seizures started, three to five seizures a day. That’s very hard when you’re having that many seizures to bring her anywhere because she could have a seizure. If I’m not looking she could fall and hit her head. When she didn’t have a PIC line she would do her best to swim, but she would be absolutely exhausted.
So you have to use every resource you can. It’s been extremely complicated. My middle daughter was told you can’t have wheat or dairy. I think in two weeks she lost over 10 pounds. She was traumatized because back then everything wasn’t gluten-free. And I remember going in the supermarket and spending hours talking to a person that worked there saying, “You know, there just not enough gluten free products right now”. And the exhaustion of coming home and feeling responsible. I’ve got to make my daughter a nutritious meal that she likes. During that year and a half, I think before gluten-free started becoming more popular, she just kept losing weight because nothing sounded good. And then on top of that, she has to take these antibiotics where you are supposed to have a full stomach. That was a nightmare.
The first, I want to say year because we were in such chronic stages, honestly was unbearable. Our family faith has helped us. There is no way I would have been able to do what I was able to do, if it weren’t for family and friends. People bringing meals; as a caretaker for that many people you are managing symptoms that are all over the board. One day your family member is literally asking you, “Am I going to die”? I’m not a doctor. I’m a mom, I’m a wife. You have to stay very strong. And besides very strong, you have to be very real.
When you feel good, ‘cause you do. You get through the years and you feel like we are starting to get out life back. My husband doesn’t have to do six hours of an IV, he only has to do three hours. So you start sharing. This has been the positive for our family. Because one thing I don’t like about Lyme was in the beginning for a long time, we were made to be felt like a crazy family and you have no idea how hard that was. There was someone that asked one of my friends, when we didn’t know we had Lyme, “Are the Athearns good at washing their hands”? You know, as a mother I take that very personally. I think there was a year where I didn’t leave our house very much, but then you start to get your life a little bit back. And you try to be as honest as you can because people will look at my oldest daughter; she has always looked healthy, and say, “Oh she looks like a model. She’s fine CAMILLE.” And this is when she had missed four or five months her junior year and she’s barely getting out of bed. This disease is so invisible and so shameful and so unfair.
You get to a point where I would look in the mirror and I would look so tired and pale that I wouldn’t even recognize myself. Our Lyme doctor definitely said, “CAMILLE you have to make it a priority to eat healthy and take care of yourself”. And I looked at him and I started crying and I said, “How? My family is dying?” But you have to as a caretaker because everyone’s relying on you. My girls came to me and they were hysterical, and I was trying to be strong for them, and they said, “Mom what would happen if you died”? And that was a turning point for me.
My youngest daughter couldn’t go to school on her own so I had to go with her every day and stay in her class in the morning and she told her teacher, “I don’t want my mom to die because who would take care of me?” You never want to feel like you’re being selfish, I struggled with that. If I ever take of myself in the littlest way… I go for a run, I feel guilty… and I’m working on that because I know that I have to be healthy. I have to feel somewhat happy in our circumstance, and you can. In a horrible circumstance it’s hard to believe that you have to find joy because if you don’t then it affects everyone around you. You have to find joy, somehow.
There’s so many mixed blessings and when you’ve been through the chronic-ness, the despair and the pain of this disease, you hold onto every single blessing. Every single blessing. I don’t care what it is. It could be the most simple thing. I have a husband that was diagnosed with a death sentence. He is alive. He got on Lyme treatment. He works every day. He’s joyful. He’s handicap. He makes the most of it. Well he’s a miracle. He either shouldn’t be here or he should be in a wheelchair, and he’s not. So I embrace that.
I have an older daughter that was born sick, went through so much growing up. She is at college. She is the most empathetic, artistic, loving human being because of what she went through. You want to embrace all that. You want to be so joyful, but I still have my Isabelle. And although it was horrible to watch, had an illness literally most of her childhood. She graduated on time and got into every single college she applied to with scholarships. But unfortunately, we thought she was making a turning point, and about then 12 days ago she stared hallucinating. So that’s hard. I think the biggest gift of my family is the love that we have for each other. And I know that sounds corny, but our family, we don’t take anything for granted.