Matthew is a 25-year old young man that was diagnosed with Lyme disease two years ago. He has always been active in extreme sports and began to realize that something was not right when he would become incredibly fatigued after doing normal things that were a part of his life. Matthew’s mother also suffers from this disease. When she was diagnosed, things began to make sense for Matthew. His mother played an important role in educating him about what he would soon experience and how best to deal with the disease. Upon his diagnoses he did both oral and IV antibiotics. Matthew describes the immediate impact on his body from the antibiotics, commonly referred to as the “Herxheimer effect.” He also talks about the emotional and psychological battle that goes on when taking antibiotics and knowing that they were going to make him feel worse before he felt better. He is a proponent of naturopathic medicine and found Epsom salt baths helpful for detoxification. Chronic fatigue, joint pain and sleep continued to be a mystery for him. He talks about the importance of having a “battle buddy” during this medical journey and believes that living “one day at a time” is the best way to deal with this disease. Today, Matthew is working twenty hours a week at his church as a youth pastor and going to school full time as a film student. He continues to remind himself that if he pushes too hard he will pay a price for overdoing it.
My name is Matthew, I’m 25 and I was diagnosed two years ago with Lyme disease. Before Lyme, I was an incredibly active person; I did a lot of travelling out of the country. I was also doing distance long boarding. I would go out and do 60 mile long board rides. I was very active in sports and, um, I was also very active in my job. Early on when we started to realize that there were things going on, I would notice that I would get incredibly fatigued, from normal things but it would take me out. And it would take me a long time to get back to where I could function normally. We started to realize that something was wrong, whether it was diet or something else.
The biggest thing for me was fatigue. So, it’s possible I could’ve been bit by a tick, but Lyme is also very much in my family. So, I was very fortunate in my diagnosis in that my mom had been searching for answers. And after searching for years and years she was diagnosed and that was right around the time that I started getting sick. And so, my timeline of my diagnosis was almost parallel with hers after decades of searching for answers. So, I received diagnosis from a Lyme literate doctor. My mom never did feel well but, she was such a sacrificial mother, she was in mother mode all the time. Like so many people with chronic Lyme, they put their best face on in front of the people that they love and very few people actually see just how much pain they’re in.
So, when I found out that she was diagnosed with Lyme things started to make sense from, I guess, tell-tell signs I didn’t fully understand. But, when she started to open up to me about what she was feeling and exhibiting, that’s when I started to say, “Okay, maybe this is going on in my life.” So, like most people with Lyme, I had more blood tests than I could care to remember. [LAUGH] And that’s why we have medical files and personal medical files for. But, I was diagnosed off of a blood test called the CD-57 and that’s, uh, a killer cell test and, uh, a lot of Lyme literate doctors will-will use that. And if that test is very low or under a certain threshold you could potentially be diagnosed with Lyme while exhibiting all of these other symptoms. I tested negative on the Western blot. And like a lot of people with chronic Lyme, because their immune system is so suppressed. So, I received that diagnosis, clinically, with my symptoms and the CD-57. I had a co-infection of bad becia [PH], which we did treat and I took the treatment actually very well. I took Nephron for that.
Nephron is, uh, actually used for anti-malaria. And so, what happens a lot in the Lyme world is you use, uh, a pharmaceutical or a natural medicine that’s used for one thing, can potentially be used for something else that’s very similar. I did do antibiotics, I did oral and I was taking two at a time. And I took them for 10 months. There was no protocol for saying, “Okay, we’re gonna take this for X amount of months, we just went for it. And so, right away I started to feel those herx reactions. Um, and the typical Lyme pain, uh, the joint pain that you will hear about, I did not exhibit that in my life until I started antibiotics. And the pain was so severe that I couldn’t walk for a little while. Um, I had hip pain that felt like every morning someone came and hit me with a sledge hammer in my leg.
So, I had to walk with a cane, if I could at all, for a little while. Taking something that you knew was going to make you feel worse but hopefully make you feel better was a constant internal struggle because not only is taking long term antibiotics potentially harmful in itself, but you don’t know what symptoms gonna come next. And is that going to be a symptom that’s something you can’t handle? So, there’s an emotional and a psychological battle that goes on when you’re taking long term antibiotics or really anything that you know is gonna make you feel terrible.
I’ve taken several herbals, some tinctures and a hoard of supplements. And so, it’s definitely been not just one thing at a time, it’s been a barrage of things. Uh, a hand full of supplements in the morning and a handful of supplements at night with tinctures throughout the day separated away from food, some with food. Your whole life is on a schedule when you are in treatment for Lyme. The detox is incredibly important. So, I did dry brushing, I did Epsom salt baths. And some people it really helps them, some people don’t tolerate them very well. I-I don’t really know if it was beneficial with me, but, you know, it’s like I tell some people, you take a multivitamin in the morning and two PM in the afternoon you don’t feel like superman.
There are some things that you do that just help your body and you know it’s helping, you may not feel it right away. And I think that those are some of the things that I did that were kind of like that multivitamin effect. Dry brushing, basically the way that it works is you get a dry brush and it’s made out of boar hair and you just rub your skin and just kind of lightly and you do it, uh, in certain strokes. And what that’s designed to do is to kind of encourage your-your skin cells to be drawing those toxins out. There’s a lot of different uses for it. And then the Epsom salt baths is just kind of that same thing to draw those toxins, um, out of the skin. Those are kind of things that I kind when I felt like I needed it. Um, any time that I started to feel ill I would kind of go to my box of detox things, “What can I do?” Whether it’s taking a glutathione or I’ll try dry brushing.
In my house we say, “Feeling toxic.” If you’re feeling toxic you reach for the detox. It’s when all of your symptoms kind of show up at once. For me, my nausea would hit, I’d feel very light headed, get that vertigo going, feel very out of it, like you’re in a dream, uh, and just that feeling of unwell. Kind of when you have that fever coming on from a flu and you’re thinking, “Okay, did I have something that I eat not land well?” Just kind of that feeling, and then on a wh-a increased scale. And it might come out of nowhere. I had to make big dietary, uh, lifestyle changes in that sense. I all r-all ready f-ate kind of healthy, but I’d eat some fast food and, you know, carb heavy, salt heavy, I’m still heavy on the salt, that’s still a sin.
But, I’ve moved over to as much fresh ingredients as much as possible, more fresh food. About three or five times a week a make a fruit and vegetable smoothie, and just eating a lot of good meats, fruits and vegetables. And I’ve gone gluten free and that’s seemed to really help with my gut issues, a lot less of the stomach issues. I’ve come out of that. And that’s-that’s something that you have to be committed to. It’s tedious but I think it was really beneficial for me. Almost seems like all Lyme treatment is experimental in some sense. There’s no one size fits all Lyme treatment for everyone person. But, once we started the antibiotics and we started all the treatment, I fell pretty quick into my symptoms. My brain fog, which is that feeling of just being totally out of it and in a dream and sometimes being unable to talk just hit a new level and I would be in a conversation with someone and I would just completely blank.
I remember one time I hit this moment of pure amnesia. I was playing music with some friends on stage and I completely blanked, I didn’t know who I was, didn’t know where I was, didn’t know what I was doing. And I looked down at my guitar and I couldn’t comprehend what this thing was. And it slowly came back after about 60 seconds, 90 seconds I remembered, “G Chord, okay I’ll just play the G Chord.” And it came back. And-and it was a really scary experience because I thought, what if that happens while I’m driving? Really the-the only thing that I found that helped me deal with chronic fatigue levels was just monitoring myself and reading my body and knowing, if I do this much more, I’m going to regret it, I’m gonna go over the edge.
So, there really was no silver bullet for me to know, okay, this is gonna help me with my chronic fatigue. It was just the fact that, “Okay I need to know my body.” Joint muscle pain, pretty much the same story. If I did a lot of activity, I would feel a lot of pain. But, interestingly enough, if I did the opposite I would feel a lot of pain. If I just laid up in bed for two or three days, man I would be in pain. And so, it’s almost like my Lyme journey has been this balance of I can’t do too much because I’ll hurt, or I can’t do nothing or I’ll feel like a zombie. And so, that middle ground has been this sort of bulls eye I’ve been trying to hit for my whole Lyme journey and it’s a tough thing to hit.
For me, sleep is a mystery. I will have good hours for months at a time and not really feel refreshing. When people tell me, you know, “Oh, I just had a great night’s sleep last night,” and I’m like “I-tell me, h-what does that feel like for you? I don’t know what that means.” So, for me sleep is one of those things where if I don’t have it I feel sick, if I have it, I feel less sick. But, there’s no real magic thing for me. And w-when I get around people my age, who are able to stay out late partying with friends or, you know, just living an active lifestyle, getting four hours of sleep, going to work and grinding, I couldn’t imagine what that would feel like, if I did that. And that makes me feel like less of a person. If I have struggles with that, I don’t feel like I’m adequate. It’s not the case, but that’s what it feels like.
Gut issues is a constant thing. Before and especially during antibiotics I’ve always had just weird things, um, with my gut. But, especially during the antibiotics, obviously you’re balancing that with probiotics. But, I’ve also noticed one of the things that’s helped me with my gut issues is changing my diet. Um, it-it really has been huge for me. Headaches was a constant battle. Um, I would have weeklong migraines that would come and go. And if I could put a scale of one to 10, they could hover around a six or a seven for days at a time. Started seeing who’s in Nuka and it works on the Atlas bone. And, it helps correcting your Atlas bone and since starting that, as well as with the m-other things, my headaches are down to about one or two days, um, a month. For me, uh, it is a constant battle of saying, “Okay, well this symptom is active right now and so let’s deal with that or this symptoms active right now.”
But, I noticed that everything seems to come in waves all together. Uh, there’s a constant symptom, always, and that’s my brain fog that never fully goes away. And that started when I was in junior high and it has never left. It will get worse and it will get better but, it will never leave. Now that I’m on the other end of a lot of the treatment and I’m in a management phase where I’m still in treatment but, less intensive. I’m able to take on projects, I’m able to live life but, I do have to listen to my body and that’s what helps me manage my symptoms.
Being diagnosed with Lyme was not a big emotional bomb for me. The hardest one is always, “What if I never get better?” And now that I’m in the management phase, now the scary question is, “What if I relapse, what if I get worse again? And what if that’s worse than the first time?” And so, those kind of questions create a constant anxiety. When I was at my worst, the emotional toll, it’s-it’s a minute by minute battle. You’re choosing to fight. Without my faith, I really don’t think that I would be here. I really don’t think I’d be around here to talk to you about my Lyme story.
My friends were very supportive. There are a few that don’t fully get it, but I’m very fortunate that the vast majority of my friends are very supportive. They’re the ones that I can open up to and they may not fully understand but they love me and they support me and they hold me up. My mom, she’s amazing, she-she’s the one that organizes all of our medical files at home and the stacks of paper. And she’s always the one that’s looking into new treatments, not only for herself but for me and everyone else in the family. The cliché in Lyme world is that you become your own doctor. And you go to doctor Google quite a bit as well. But, you have to research, you-you can’t just go to one doctor and say, “Hi, here I am, fix me.” You have to go to multiple doctors; you have to do a lot of research. And if you only go to one person or you only try one treatment, you may never know that you have Lyme or if you do, you may never get better.
Everybody needs a battle buddy. I tell people that I have two churches, the church I attend and the IV room at my clinic. I’ve heard more stories that I can relate to that reaffirm, uh, the truth behind my Lyme story, because there are a lot of doubters out there. And there’s plenty of medical doctors that will tell you, you need to see a psychiatrist because it’s in your head. And I’ve heard story after story of that. H
How I manage my expectations is l-living by a slogan that my dad introduced to me which is, “One day at a time.” You know, we live our lives one day at a time, ‘cause that’s all we have. We can’t live for tomorrow, it has enough worries of its own, you know, we live for today. And so, how can I get out of today the expectations that I have for today? I worry and I have anxiety about, you know, if I get married, am I gonna be a husband that three or four years into my marriage is bed bound and, you know, my wife is having to take care of me? That’s a fear that I have. Uh, I have to manage my expectations by whatever I can do for today. And that’s putting my best foot forward and it’s just walking for today, that’s all I have.
The finances behind Lyme disease are a whole other war. Just the pharmaceuticals I’ve taken, you’re looking at about 25,000 dollars in the last year alone. And that’s not including herbal treatments, doctor appointments and things of that nature. I’ve been very blessed that m-my insurance has actually covered some of the things like antibiotics. Most people aren’t that fortunate. So, for someone who finds out they have a diagnosis of Lyme and there’s not money there, there’s not a whole lot of hope. And that’s where we’re needing change.
So, where I am now, I am working 20 at my church as a youth pastor. I’m going to school full time for digital film production. And I’m pretty active. I do need to take time down, but I spend a lot of time with my students, with junior highers and high schoolers and I have a lot of friends. I’m right about, as far as activity level, as I was about five years ago when I first having symptoms. But, like I said, now when I go out, I have to just be doing checks, I have to make sure I’m not overdoing it and my friends know that. I’m just taking one day at a time [LAUGH] in that sense as well.
What I would tell someone that just received a diagnosis at my age is that it’s gonna be a battle and it’s gonna get really brutal, but you have to go through it. And it’s gonna get worse before it gets better. But, you can choose joy. There’s gonna be long nights and there’s gonna be questions, it’s gonna hurt like hell, but choose joy because we have that ability. And if you don’t choose joy, you’re gonna lose. Unfortunately we lose people to Lyme disease every year and that’s a tragedy. And I very well could’ve been one of them. I really believe that we have the power to get through this if we choose to.