Candice is a 28-year-old young lady who has been dealing with late stage Lyme for 10 years now. Life before Lyme for Candice was extremely active. She was a soccer player, a dancer, had tons of friends and was very social. She doesn’t remember getting a tick bite but does remember a rash on the side of her leg developing when she was at a high school summer camp over ten years ago. She quickly came down with flu like symptoms and a few months later on a family trip became so exhausted and in pain that she was hospitalized upon the return home. Everything in her body was beginning to shut down. The doctors found abnormalities that could not find a root cause for her illness and ultimately “non-specific auto immune disease” and sent her home. Eight months later she had gone from a strong 145-pound soccer player to being bed ridden and weighing 85 pounds. She talks about the rumors she heard among school friends and families that she was suffering from an eating disorder. Her doctors, parents and Candice all knew there was something significantly wrong, as she did not present with any psychological problems. She ultimately had to have a feeding tube installed to stabilize her weight loss. She talks about the common story for many Lyme patients by being passed on from doctor to doctor. Ultimately with the help of each doctor and finally meeting a Lyme literate MD, she was diagnosed with late stage Lyme disease. She started off taking a lot of antimicrobial herbs and supplements and finally getting strong enough to receive antibiotics. Complicating Candice’s story is the fact that she also suffered from mold exposure which was determined to be a huge part of her weight-loss. Like many other Lyme patients Candice suffered from insomnia and brain fog, but actually didn’t have classic insomnia… instead suffering from nocturnal seizures. The seizures would go on for months and each night she would just have to ride them out unable to speak or move during the seizures. Once she was able to go on IV antibiotics her health took a significant turn for the better. Her life had passed her by over the last ten years, but at 28 she was strong enough to attend her ten-year high school reunion, which was a significant step on the road to recovery for her. Today she is well enough to be working for a foundation that supports Lyme patients and is also going to school to get her degree to become a licensed therapist. Her story is truly an example of how one must meet the challenges that Lyme disease presents to begin a life again.
My name is Candice, I’m 28 years old. I’ve been dealing with Lyme for ten years now. Life before Lyme I was a 15-year-old soccer player, I danced, I went out with friends. I was very social. I was at a camp and came down with flu-like symptoms and I had a rash on the side of my leg, and I don’t remember getting bitten by any bugs, any ticks. I didn’t see anything, so I just thought I had the flu, and then soon after that trip I ended up taking a trip with my family to Hawaii, and I remember getting so sick. The flu-like symptoms just kept progressing. I was lying on the floor of the hotel thinking, “Something is really wrong.” But I didn’t know what it was. That was the trip I remember I didn’t recover from. I was 16 years old when I started to really experience a lot of physical issues. I landed in the hospital for about two weeks, where they ran a bunch of tests and found a bunch of things that were wrong. So I had Cirrhosis of the liver, my GI track had failed, my autonomic nervous system so I had barely any blood pressure, my heart rate was very low, I couldn’t stand up. And they found all these abnormalities on tests but couldn’t find a root cause, so they called it a “non-specific autoimmune disease” and sent me home.
And so it was up to us, my family and I, to think outside of the box and try to find the root cause before it really took me down. So I was a 145-pound soccer player, an athlete, and I dropped to 85 pounds in the course of eight months. It was really difficult because when someone drops weight so fast and looks so emaciated, you know, everyone’s first thought, your peers, your teachers, your family, your doctors to think “Oh this person has an eating disorder.” Why were my organs shutting down? Why was my autonomic nervous system shutting down? I didn’t have any answers for any of my peers or my friends or my family, so it was very isolating. My family and I were the only ones that knew the truth, I was really sick. So when I was in the hospital the doctors discovered a lot of autoimmune activity, a lot of organ dysfunction, a lot neurological symptoms. So they knew that I wasn’t struggling with a psychological problem, but they couldn’t really figure out what the root cause of all of these physical problems were.
So when they released me from the hospital, they sent me home with feeding tube liquid. I had to drink feeding tube liquid for a while. So they hospitalized me and they did find a lot of things that were wrong, but they couldn’t figure out the reason or the root cause, so they sent me to therapists for children who have degenerative or terminal illnesses and they tried to get me ready to live however long my life would be with this undermined autoimmune disease. But that wasn’t good enough for my family and I so we started looking for holistic doctors who may approach this with a open mind and maybe dig outside of the box for answers, and that’s where I was tested for all sorts of different things, one of them being Lyme Disease. And so we tested it for it and I came back positive and it gave us an answer and some hope and that’s when I got my diagnosis.
It was a very long ten-year journey after that to get to where I am today. I was passed from doctor to doctor because I was a very complicated case, which many of us are. I first started off at an MD and we tried some antibiotics and I just landed in the hospital again. My body just wasn’t ready for it. I was still very underweight, my organs were very weak, my liver couldn’t handle much. It kind of brought out some symptoms I hadn’t experienced before as well, which is very common when people start antibiotics. The bacteria kind of comes out raging, you start getting really toxic. So then I ended up in the hands of a chiropractic neurologist, who started to really gently support my organs and we didn’t even focus on the bacteria, we just needed to build me back up. I gained some weight back. I went on a special diet. I’m gluten-free and I really committed to that and I committed to a lot of lifestyle changes that really supported gaining my strength back. And I’ve seen acupuncturists. And I’m just so grateful for each of their presence because they each contribute something really important. Throughout the course of the disease I became a little bit of a hermit. There were years where I didn’t leave the house at all. I couldn’t. I was bedridden. It’s like you sort of lose this huge gap of time of your life, where other people are developing and experiencing things and you just kind of haven’t.
And so now it’s almost like trying to make up for lost time. I was just seventeen and now I blinked and I’m not. So it’s sort of now trying to figure out what does that mean. I started to get better at age 22, 23. My possibilities for treatment started to expand because I could tolerate more. So we started to take a lot of antimicrobial herbs and supplements and things that would really address the root of this whole problem, the bacteria. And we also discovered there were a lot of developments too in the Lyme world. People were actually starting to study it and study certain genetic components and environmental components. ‘Cause I was sort of in the forefront of all this. So five years in, we could start to explore things like histamine levels and how does mold play a role in this, or how do other environmental toxins play a role. With Lyme patients a lot of other infections become opportunistic. You don’t have an immune system so anything else that comes along, it’s going to hitch a ride. I ended up being a mold case. I grew up in a moldy house. None of my other family members were effected. And that was hard because it’s hard having your doctor explain to your family that no one else is sick but your house is making this one family member sick, because she has no immune system.
Mold is a component of this disease because when you have one… what they call it is a biotoxin illness, they call Lyme a biotoxin illness, your system can’t handle two. And for me it turned out to be a huge part of the weight loss. I definitely experienced and continue to experience a level of chronic fatigue with the Lyme. I think that’s the hard part about this is even when you feel like you’re coming out on the other side of it there’s still this level of fatigue that I think it’s hard to explain to someone who hasn’t been bone tired before. Someone who hasn’t walked around feeling like their pockets are full of lead and bricks and you’re winded like you just ran a marathon, but you’d just gotten out of bed. What I would tell a Lyme patient is the fatigue maybe doesn’t go away but it gets a lot easier to manage because you don’t have a million other symptoms exhausting you 24/7.
I had a very unique case with insomnia and brain fog because I actually didn’t have classic insomnia, I had nocturnal seizures. So when my brain was supposed to be going to sleep, I was so effected neurologically that my brain would go into seizure activity. So I would seize for a good half of the night and then I would wake up just so discombobulated. My brain would be scrambled. They were myoclonic seizures so I was jerking and had no control of my body for hours every night. Doctors would try to give me things to calm that down but then they would cause other symptoms. So it turned out that I just had to ride it out and they would have to try to figure out how to just treat the root cause of the seizure activity, and finally we did but it took years to calm down and detox my brain and rewire it. And I worked with a chiropractic neurologist to do that, to rewire the brain to not be so overstimulated and burdened at night that it had to go into abnormal brain activity. Everybody experiences seizures differently and for me I was aware that I was having it but I wasn’t aware of the time that was passing, I couldn’t speak. All I could make was involuntary noises. You just have to ride it out until it’s over because there’s really nothing you can do. You can’t get out of it.
I think my biggest regret in this is that I actually isolated myself. For me it was easier to just not talk because I felt like if I opened up that can of worms I wasn’t sure what was going to come out, so I tried to keep it all bottled up and I shut everyone out. I regret that now in hindsight, but that’s the way I got through it. It was really hard on my friends from high school because I shut them out. I really regret that. As I started to get better I started to be able to do the little things that no one else really thinks much of. Like, I can’t tell you how excited I was the first time I went back into Whole Foods. Like, some people that’s so boring for them but I got to pick out my own broccoli and it was like the best day ever. I took a walk in the park alone because, you know, when you have seizure activity you can’t go anywhere alone. So once I started taking walks alone and started to be more independent and self-reliant, that’s how I knew I was starting to come out on the other side of something I wasn’t sure I was actually going to come out on the other side of.
I am on two different IV antibiotics right now, and then some supportive supplements to kind of help my body deal with it. Just starting antibiotics now ten years into this. I was afraid that first day when they hooked me up to the IV. That was pretty scary, but I just had this gut feeling, I mean, I can feel my own strength now. I know how much stronger I am now, and I know what I’ve left in the past. I just kind of knew I could-I could handle it. They would like me to do at least a year of IV antibiotics to make sure that the bacteria is all under control. I didn’t really address it from the beginning, I wasn’t able to, so they want to make sure that I can get into a place where I’m really strong, but can stay there. Lyme Disease needs to be studied more. It needs to be widely-accepted so we can work on better understanding it, better treatment protocols, better testing, better markers to try to figure out where someone is in the disease process and how far they have to go or what they need to get well and stay well.
I was really blessed because every doctor that I saw was connected to another doctor or another practitioner. That’s very cool thing about the Lyme community and the doctors who treat this disease. They all work together, and I think that’s what it takes to get a Lyme patient well. It takes a village. I think that the most important thing for me through all of this to kind of stay intact emotionally was to believe that there was another side to it, and that I would come out on the other side knowing that there was a purpose to it. The hardest part of this whole journey for me was letting go of expectations because I feel like I had to let go of the life that I had planned for myself in order to accept the life that was actually mine. I think through this whole journey I have really come to appreciate family more and more.
I don’t think I would know my grandparents as well as I do today if it hadn’t been for this illness. I actually lived with them for many years while I was sick and they are part of the reason that I am here today. They really helped me get through this and I don’t think anybody can get through this without at least one person who can be their solid rock. I just really cherish my grandparents. I don’t think many 28-year-olds can say that their best friends are 75 years old, but mine are. It doesn’t look anything like anybody else’s life at 28. I just have to accept it as it is and just be grateful that I am still here living it. Right now I work for a foundation that supports Lyme patients, but I’m also going to school to get my degree to become a licensed therapist, so I can also support Lyme patients in a more integrated and personal way. The hardest part of coming out on the other side of this as a 28-year-old is trying to socialize again when you were a hermit for a decade, literally a decade.
So the timing was really interesting because as I started antibiotics and started to really get better it was also the same time as my ten-year high school reunion and I decided to go. The people that were there, the last time they had saw me I was 80 pounds and looked like death walking. So I showed up, I felt a little bit like a baby giraffe, like I didn’t know what was going on, but at the same time it felt good because it reminded me that I was alive. I think that was the hardest part, I realize in hindsight being, you know, so isolated you don’t have much that makes you feel alive, even though you are. So I think the coolest part of standing in that room surrounded by a bunch of my peers was I-it’s like “Okay, I’m actually… I’m here, I’m getting through it.” I’m just grateful to have made it to this point.