Ari is a 29-year old young man that was diagnosed with late-stage Lyme disease at the age of 18. His younger sister has also been struggling with the disease as well. Ari loved sports in junior high and was a cross-country runner. By the end of 8th grade he was no longer able to run. Homework took 3 or 4 times longer than it should have as he was challenged by brain fog symptoms. He suffered from intense insomnia and was finally diagnosed five years after the onset of his symptoms. Ari recalls getting his diagnoses as a real game changer. There was finally a plan of action and he found relief in the knowledge that he had Lyme and a number of co-infections. Ari started off with oral antibiotics and later had to have a PICC line put in to do IV antibiotics. He talks about the importance of detoxing and the balancing act of receiving medicine, nutrients and everything else needed to rid the body of its toxic leftovers. At age of 24, Ari and his sister went to India for Human Embryonic Stem Cell Transplant therapy. He returned to school and began to live a normal life until 2 years ago when he suffered a significant relapse. Ari talks about how the illness affects your body as well everyone around you. He speaks about his mother having to sell their house to afford treatments for he and his sister and how their illness created a lot of confusion amongst their friends and family. His mother, Kathleen Steele, is featured as our licensed social worker in this series.
My name is Ari, I’m 29 and I-I was diagnosed with Lyme Disease in 2005 when I was 18. I have a younger sister, Imani, we’re two and a half years apart, we were a pretty active family growing up. We liked to do a lot of hiking and swimming. Yeah I think I had a really good start to life. Good education, good friends. Not only was I suffering from Lyme Disease, but my sister also was diagnosed with Lyme Disease and we have been both suffering concurrently from that. I am not aware of having a tick bite, though I had definitely seen ticks on dogs. What really kind of set things off, we had some… a flood in our house and there was some toxic mold. And-and so I think that suppressed my immune system and I got sick and it took about five years to figure out that it wasn’t just the mold but that that had probably led the Lyme Disease to really take hold. When I first got sick I was in seventh grade we thought it was maybe a cold, it didn’t go away, we thought maybe a flu, we thought maybe a virus. I started seeing doctors. I was extremely tired. I was confused. I started to have interruptions with sleep. I kept getting more and more symptoms. So I saw every kind of doctor that we could think of. I went to the ear doctor to have things tested in my equilibrium. Pediatrician told my mom to take me to a psychiatrist because, you know, she couldn’t find anything. It was a really kind of confusing and agonizing experience going from doctor to doctor and not really finding anything conclusive right away to do anything about.
I was being treated, generally speaking, for chronic fatigue and nutrition and hearing doctors that are challenging kind of my take on what I’m experiencing and making sure that it’s not some sort of behavioral problem. It was just a process full of a lot of just doubt and exhaustion. In terms of things that kind of changed and that I lost, I was on the basketball team when I was in seventh grade, and I was on the cross-country team and at the beginning of the school year I was about in the middle with the cross-country and I had to stop by the end, ‘cause I really just couldn’t finish. Homework started to take two, three, four times as long as it used to because I was confused, I couldn’t concentrate. I wasn’t sleeping. And so with kind of being behind with school that kind of took over my social life because the energy that I did have was going to homework, and it was trying to be at class when I could be. Getting to the point where I couldn’t reliably commit to things, I wouldn’t know if I’d be able to make it to somebody’s birthday party because I could be really sick that day. My world shrank around me mostly to, you know, my sister and my mom and the people that were still coming around.
It was also a challenge with people understanding. We lost some really good family friends. Other parents that… didn’t necessarily understand what was going on with me and weren’t sure if they really wanted their children hanging out with me. So that was a really painful process as well. So five years into suffering from kind of a mysterious illness that we couldn’t really figure out and couldn’t figure out how to get rid of, one of my doctor’s ordered a blood test for Lyme Disease that came back positive for Lyme, and two co-infections and then that’s when I started the antibiotic treatment. I’m not sure if I knew th-about the controversy when I was first diagnosed, but I’ve became aware of it, um, fairly immediately. With different doctors that I saw that didn’t believe in ongoing chronic Lyme Disease, that felt that it really wasn’t a real problem, and I think that some of that controversy is definitely why it took five years and more than seventeen doctors before I got tested for Lyme Disease. And with what I know now is the sooner that you get treated, the better it is. Just test positive for Lyme Disease was really sort of reassuring in a sense that there was something that I could test for, that there was antibiotics and other treatments that we knew could be utilized. I wasn’t totally excited about it because I had been, you know, given other diagnoses and hope before that there was something… that I was suffering from something that we could do something about.
But that was a game-changer because there was something to call it. It wasn’t just chronic fatigue and this set of symptoms. When I was hearing about the Lyme Disease and co-infections it was… it was all new to me. Having the co-infections I think added to the complexity in that they-they cause different sets of symptoms and they interfered with different sorts of body functions. It couldn’t hit them all at the same time. So it meant that we had to look at different pieces, look at those individually and find the medications that were going to deal with each co-infection but still deal with the Lyme infection and keep track of-of three infections, not just one. The foundation of a lot of my treatment were antibiotics to kill the bacterial infection. I… needed a lot of antibiotics so I ended up having a PICC line in order to do IV antibiotics. I think at one point I had two different drips. There was a point where I had five or six hours of IV antibiotics per day. So it was a huge part of my life. I had to have an IV pull, to have a hanger to hang the IV bag up, and it life more difficult. I was determined to get out of the house and get a latte. So I had to take my IV bag because I was in the middle of like a three-hour drip and trying to get in the door at Starbucks was kind of difficult with an IV bag and I had oxygen at the time for energy and yeah, here’s this young kid that doesn’t look sick but has tubes and cords and stuff and nobody helped me at the door. It took me three times to get in. I think people just didn’t know what to do.
Detoxing has been really important with killing the Lyme Disease but just even with general health. And for me with having been exposed to mold detox was a huge part of that. Detoxification is really complicated when you’re needing to also be taking in a lot of things. So there’s-so that-that balancing act of receiving the kind of… the medicine and the nutrients and everything that you need but getting rid of all the excess and all the toxic leftover. And spacing that, timing has been a huge challenge with that because certain things have to be with medications, away, with food, without food. I didn’t feel better right away, I felt a lot worse. But then it brought… ’cause I could just remember being really nauseous I had a lot of stomach pain and discomfort. But it really knocked me out and it-it brought out kind of most of my symptoms much more intense. But I was exhausted. I had really a difficult time thinking, I had short term memory. I would get confused, I would walk into a room in my house and not remember what I was doing there, having to have help remembering the things that I needed, to go to school or go to appointments. I mean things like taking my socks off before getting in the shower, were just hard to remember. Dealing with brain fog was kind of a-a really big undertaking it was just I think one of the most challenging parts of the illness because it wasn’t just that my body wasn’t cooperating or was having symptoms. But it was that a lot of the times I had difficulty thinking.
I was fortunate to, you know, have the people around me that were willing to spend an extra moment to help me remember. Things that I took for granted that I could always just do, that were natural kind of were no longer that way, that all kind of went out the window. So having Lyme Disease interrupted all the sort of regular rhythms of my body and my life and what I was doing. And then not sleeping, and then trying to get back to sleep when your body isn’t comfortable and my back was hurting, it just… it can spiral and things get a lot worse. During different parts of the illness I remember there was a period where it was maybe three or four days where I hadn’t had any meaningful sleep and then I couldn’t really be alone because you can’t think any more. I’ve had a lot of back pain and discomfort and that has made sitting still difficult. Traveling from one place to another was difficult. Being in the car, going over bumps. And I had migraine headaches, I had a lot of stomach pain. My balance and coordination was totally off, so I’d get lots of bruises and scrapes.
I am in a much better place in terms of my health now than I used to be. I was really knocked out for a while. There was time where I couldn’t lift food to my face, but it is a strange thing ‘cause I’m a long way from that now. I-I think trying a lot of new things has been really critical to trying to recover and get better because everybody’s different and with the way that Lyme Disease is, it effects people differently depending on what kind of treatments you’ve had and how long and what parts of your body that the infection is prevalent. I’ve had to try a lot of things that didn’t work to find the things that did work. I had had the opportunity to go to India for stem cell transplants in 2012 and ’13 which made a huge difference. I kind of plateaued a little bit with the antibiotics that I had been on, but I had a lot more strength and I was able to consistently do things. I think almost two years off of antibiotics I was in school full time I was taking honors classes, I was for the first time able to do a little bit of extra-curricular. I don’t really know what happened, but I think I was exposed, probably over time, without being aware of it, to mold in some of the older buildings at my school and at the end of 2015 I just crashed. I started getting symptoms that I hadn’t had in years.
It was at a point where I really was feeling like I kind of had a grasp on my life. I was taking a full course load, I was getting the grades that I wanted, and I was having more of a social life and so that was… really disruptive and disheartening and I think I had gotten to a point where I had gotten enough better I didn’t really expect to get really sick again. And so I’m kind of starting to come out the other side of that now. The emotional impact and the total experience is an enormous sort of topic. It was difficult to explain to my friends what was going on because I didn’t know and they didn’t know. I kind of… the isolation has been the most profound and most challenging aspect of it. It’s just not being able to be in the groups in the communities and interact with people in the way that I used to or with the frequency. When I’m stuck at home and I’m sick it can be really very lonely and very isolated. I’ve made sure to kind of approach my health and wellness from as may angles as I can and that’s included eh-psychological care. And-and I d-do have a medication for depression because after a few years of being sick it was just too much I think for a person to deal with. And I’m now 29, it’s a different kind of feeling where I still haven’t quite… I-I’ve gotten to a point where I was able to s-start to establish a life.
Having this illness doesn’t just effect my body, you know, it effects everything. It effects the people around me, my mom who wants desperately really for both her children to be better. Not looking as sick as I feel and as sick as I’ve been has kind of been a blessing but also really a challenge, ‘cause I can sort of slip into a crowd without standing out as somebody with different needs and poor health; but it also has been really hard in that I’m not always taken as seriously when I do need help, when I’m having trouble. So it’s really hard, it’s hard for people to understand I think things that they don’t see and this is one of those kind of illnesses that can affect any and every part of your body and not necessarily be visible on the outside. And not yet really being able to rely on my body or to rely on my health is the foundation for the basis of building a life, building a family, all of those things that are severely impacted. I’ve had to take a lot of care I guess to manage my own feelings to maintain resolve, and strength and optimism when it effects every sort of relationship and every sort of friendship. So that was really difficult with friends, we were used to going out and doing things and sharing is where it comes… turns into sort of a visitation thing where they’re coming to visit you when you’re sick. That can be difficult and change the dynamic. Well I’ve had a couple experiences where I was able to do a little bit of work but generally speaking I can’t really predict. I leave with maybe a little bit of what my ambitions are, but then there’s hesitation there. What if I can’t follow through? How to relate to a world that is moving at a different pace than I am when my friends and peers are now far ahead of me.
Going through this process, my family and I, we’ve had to rely on each other at a much deeper and more intimate way than I think we did before. If you don’t have a front row seat it’s really hard to understand what’s going on. We’ve ended up a lot closer and I’ve been really fortunate to have a-a mom that’s been in my corner and that’s been incredibly able to be an advocate for my sister and I. Both with our medical treatment and with exploring our options it’s been, uh, a really tremendous sacrifice. My parents sold our house I think in 2002 and most of that money has gone to medical treatment. It’s a constant struggle to figure out how to provide and she works now a lot more than she used to. I don’t really know how she does it. I think she’s just a-a very determined and very strong person that is determined to take care of us. I’m really hopeful that I can get through this medical journey and get to the other side where I’m hopefully able to offer support to other people that are dealing with it, to live the full and balanced life that I anticipated living, one that’s not defined by this sort of crazy illness.
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