Well, this is a topic I don’t really like to talk about, in fact, the number one thing I hate most in life is talking about and bringing attention to myself. Despite this, I really feel that I need to tell my story and my journey with Lyme disease and associated co-infections to help spread awareness of this awful disease. I am not the only one going through this. There are so many people sick with this disease and there are so many more people that don’t even know they have it and are suffering. The more people understand about it, the more we can all learn and be aware of it. “Refuse to die” has been my slogan, and it’s my mindset during these difficult times. I think it’s a really fitting slogan for anybody dealing with this disease.
If you don’t want to read my sad story and want just a short summary of what I’ve been going through, just watch the movie “Cast Away” with Tom Hanks. That movie is a perfect parallel except that my plane crash took 15 years and now 18 years later, I am currently in the process of trying to figure out how to get off this deserted island. You feel like the world and society has just cast you away and left you on an island with nothing. Hopefully I can have a similar ending to the movie where life can go on. That’s all I’m hoping for at this point. 🤞
Okay now for the long story that I’ll try to sum it up quickly as I can. Life drastically changed one day when I was 25 years old and I came down with a very bad illness. Think mono, flu, food poisoning all at once times 10. That was a terrible week. At the time, I got over that illness somewhat, but my body and mind were vastly different and not right after that sickness. My sleep was not good, when I ate food my body didn’t respond the same, when I drank liquids, the body was not the same, my mind was not the same, I had no energy, massive fatigue all the time, ect. I mean I knew my body and I knew things were not right.
That’s when I went to go see a doctor. Right? That’s what we’re all programmed to do when something’s wrong, you go to the doctor, and they try to fix you up. Well, doctor after doctor, specialist after specialist, test after test after test and repeating that process for 15 years, none of them could tell me with 100% certainty what was wrong with me. Lots of them had theories and their opinions of what they thought was wrong with me, ranging from “you’re crazy”, “you have serious depression”, “you have MS” “You have rheumatoid arthritis” “You have lupus” “You have narcolepsy” and countless others I can’t even remember. All I had to do at the time was say “okay” to any one of those doctors and they would have loaded me up on big pharma drugs, trying to treat what they think I have. I would have been eating those drugs like candy for the rest of my life, until they killed my organs and then I would have had even more problems. Thank goodness for my stubbornness, I’m not really a fan of taking Pharma drugs unless there’s a very good proven reason for them so I was not going to take anything, until any of those doctors could prove it with test/symptoms, etc. When a doctor says “I think” that’s not a good enough reason for me. This experience really makes me wonder how many sick people who are out there have fallen into this trap, have never really figured out what their true diagnosis is, and are getting treated for something they don’t even have.
Over the course of 15 years being sent to all these different doctors and trying to figure out what was wrong with me, I just kept getting sicker and sicker. It was a very slow, gradual decline in my health with constant ups and downs. Now the crazy thing with this disease is that you look perfectly fine and healthy on the outside, but you are suffering so immensely in the inside, both physically and mentally. To everyone and the rest of the world I was a perfectly healthy and normal person. There was only one person who could tell by looking at me when I was feeling very very sick and that was my wife. She could look at my eyes and be like “Oh you’re having a really bad day.”
I am a very stubborn person, so year after year, I would push through everything physically and mentally. I always believe my problems aren’t anybody else’s problems, so I would never discuss anything with anybody. I basically turned it into a joke and called it “Casey disease.” During those really bad days when I couldn’t hide it, I would try to laugh about it and downplay it so that nobody had to worry.
When you’re dying from the inside out, you do things that you’re not even aware of. Because you feel so relentlessly sick and exhausted all the time you naturally just slowly start doing less and less like keeping in touch with friends or participating in social events. I would avoid conversations because there were many days that I couldn’t get my brain to think well enough to have one. I used to be that person that people could count on to help build or fix things, but I slowly had to stop helping people because I didn’t have the energy. I used to be that person who could push and work long hours to perfect whatever I was working on (and I enjoyed it), but I had to stop trying to overachieve or even work hard, basically slowly stop trying to do everything, because I realized it was making my condition so much worse. It was so hard for me to enjoy anything, no matter how hard I tried, because I was very rarely ever well enough to enjoy it. This disease just affects you in every single way imaginable. I’m not even getting into the mental tole it takes to face this daily struggle with no answers and almost no support for so long. It’s a real miracle that I am still sane.
After 15 years of just getting sicker and sicker and having no clue what the heck was wrong with me, I was so sick to the point where I had splitting migraines and blurry vision every day. I only had enough mental/physical energy for about the first 2 hours of the day. After that I was basically a vegetable. I was at work and things were so bad that I literally couldn’t write my name on a piece of paper. My brain couldn’t process the information to make my hands actually do that task. I don’t get scared of much but that was scary as hell and basically my breaking point. Something was very seriously wrong with me and getting worse. I knew if I didn’t figure this out soon, my mind and body couldn’t take much more. I knew I had to do anything and everything to figure out what was wrong with me.
My primary doctor was the only doctor who believed me and cared that I was really sick, he just didn’t know what was wrong with me. Other doctors would do their standard tests and when I didn’t check any of the handful of boxes they were trained to look for, they would shrug their shoulders and send me on my way with little more than and “I’m sorry you don’t feel well.”
With the help of my primary doctor, I took a leave from work because I wanted to make sure there wasn’t anything environmental-wise that was making me sick at work. After some rest and some research, I heard from some friends who have some odd illnesses who had good luck at Cleveland clinic which is 3 hours down the road from me. That’s a place with some of the smartest doctors in the world so I figured maybe they can help me. I got my foot in the door there with a neurologist. He didn’t know what was making me so sick but he was able to help with some medicine for my migraines so that was good and at least that got my foot in the door at Cleveland clinic. In the meantime, 3 months have passed since I left work, and even though I had a short-term and long-term disability policy, it turns out it’s all useless until you have a diagnosis. If I break my leg or have major surgery or have something like cancer, those disability policies will throw piles of money at you, but if nobody knows what the hell is wrong with you, you don’t get a cent. The same thing goes with all the government disabilities. Nothing like getting kicked in the teeth when you’re down. So, after figuring that out I felt the only thing I could do was to resign from work. It’s not easy throwing away a 15-year career but I really felt I needed to make any and every sacrifice to figure out what was wrong with me.
With a little more time, rest and research, and going with my gut feeling, I made an appointment with the Functional Medicine department at the Cleveland clinic. If none of if you know what Functional Medicine is, to sum it up quickly these are a type of doctor who are more outside the box thinkers than the typical protocol doctors that most are used to. They will do whatever it takes to figure out what the root cause issues are and then do whatever it takes to make you better; from lifestyle/habit changes, natural/Chinese medicine to pharmaceuticals (Kind of more like what old school doctors used to be like).
Going to the Functional Medicine department at Cleveland Clinic was one of the best decisions I made in my life. For the next 2 years, all during the flipping stupid pandemic, I worked with them, having lots of expensive testing done along with experimental therapies and diets. Then finally, after a 2 years, the doctors were able to put the puzzle together to figure out what was the root cause of my illness. It was Lyme disease and co-infections. After 16 freaken years I finally saw the face of the ghost I’ve been fighting all this time. It was a moment in time I didn’t think that would ever happen and only dreamed of. But now that I can see that ghost, I am going to fight it, and I’m going to fight like hell. Now I’ve been tested for Lyme disease many, many times through all the normal doctors throughout the years. Sadly, little did I know (along with most traditionally trained doctors) that those Standardized tests are pretty much useless/inaccurate and very outdated. Lyme is so complicated and there’s so many strands that it’s very hard to detect. It requires more modern specialized laboratory testing to detect.
Now the fight is on, and that fight is going to be a very long one. I have Chronic Lyme disease with Co-infections, and that’s definitely the worst kind. I read stories of some famous people who have Chronic Lyme who have unlimited means and it’s taken them 10 plus years to get theirs under control to have a somewhat better quality of life. Lyme disease is like a sticky sponge for everything bad. What happens is when Lyme disease goes untreated, you start accumulating what they call Co-infections. Your body is so compromised from the infection that other infections which most people’s bodies would clear up and take care of on their own (like mercury, mold, lead, etc.), the Lyme-infected body can’t clear them out, so you start accumulating these co-infections. In addition to that, there are other tick-borne viruses and bacteria that many Lyme patients have in addition to the Lyme bacteria. I think I accumulated all of them. Things I know I have is chronic Epstein bar virus, babesiosis, bartonella, mycotoxins, Lead, Mercury, leaky gut, severe allergic reactions, Insomnia and more I probably don’t even know about.
Because of state laws, the Docs at the Functional Medicine in Cleveland clinic couldn’t help me anymore with treatment (treating patients and prescribing treatment across state lines) o I had to find a Local Lyme Literate medical doctor, which there are only a few in every state who specialize in this type of thing (mostly because of the lack of knowledge of the disease and insurance companies won’t pay for most of their services or treatments). Luckily for me I have one in my local area and I’ve been working with that doctor for over a year now.
Treatments for this thing are anything and everything it seems like. You kind of feel like you are a Labatory test rat. I had a PICC line installed in my arm which goes right to the heart. I have been on daily IV antibiotics for over a year now, taking a hundred plus supplements a day, half a dozen therapies daily and more. Every day is such a learning experience, just from studying and learning about the disease, to figuring out what your body can and can’t do on a daily basis. It’s beyond a full-time job. I have had to change pretty much everything I do on a daily basis from what I eat/drink to the way I eat/drink, from what I can do to what I can’t do at certain times. Every way I go about my life has been changed to try to manage my illness. It gets pretty dang overwhelming at times. There is no timetable or any guarantee that you will get better, that’s why I have to be prepared for a very long road ahead. The goal every day is to try to get some little bits of quality of life back.
The Mental aspect of this journey is absolutely brutal. It doesn’t matter how mentally tough you are, you will get broken down to your core and then some. The shit comes at you from every angle. Just the daily push to keep going no matter how sick you feel is tough enough by itself. On a daily basis, you feel like the whole world is against you and it kinda is. The CDC and medical field have a world of catching up to do in diagnosing and treating Lyme and tick-borne illnesses and, in the meantime people are suffering, losing so much time in life because of sickness, your career, ability to provide for yourself and the monetary struggles, the list just goes on and on and on.
There are two things that keep me from really falling down a dark path. First is my amazing wife Amanda. It’s so important to have at least one person on your side believing in you and supporting your journey. Her support and belief in me really helped me keep grounded to what I believed in. The second is surfing/sailing. Surfing and sailing are not just sports, they are a lifestyle. When I surf and sail I can completely clear my mind from all the BS in the world and have a moment of happiness and clarity, it allows me to kind of reset myself. If it wasn’t for Amanda and Surfing, there would have been no way I would have been able to keep my shit together all these years.
This journey is about starting over and a new way of life. There’s basically two ways of generally looking at everything. Like glass half empty you can be kind of pissed off at the world and this disease for taking 16 years of the best parts of your life while leaving you disabled and in financial ruins. Na that’s not me, I look at it as half full, even though every moment and every day is challenging as heck I think there is a lot of awesome life to still be lived.
Every day going forward is a constant challenge. Each day I must reinvent my life and I am finding out it is going to be a struggle. For example, what I called Casey superpowers, I don’t have anymore. Let me explain that. I am definitely not the smartest at anything. The only thing I’m good at is numbers and working with my hands. The one thing I always knew I could do to get ahead in life was work hard and out work everyone. If I had to work 20 hours a day to get ahead, that is what I would do. If I wasn’t good at something I could just work myself to the bone to get good at it.
Now in my current state those superpowers are long gone. I have a very limited number of hours every day where I have some mental clarity and maybe even a little bit of energy. I have to be super-efficient to get anything done in life, and that’s on the good days. A lot of days are just a complete write off. I absolutely can’t push it physically or mentally, not one bit. If I try to push too hard it usually turns into a huge setback every time. I feel like I’m Humpy Dumpty falling off the wall every 5 seconds. I can feel ok one minute then horrible the next. I must be so careful with everything I do 24 hours a day. The reality is I am a disabled person, but I am way too stubborn to accept that. I am going to figure out a way to make life more consistent and predictable so life can be a bit more normal, it’s just going to take me a bit of time to figure that out. It’s a struggle no doubt.
The monetary side of this disease is absolutely devastating. Especially when you get in bad enough health like I am. I haven’t been able to work in 3 years and will at least be limited for some time to come. Now I am far from perfect, but I did mostly everything you supposed to do in life in case you ever got sick or injured. I pretty much lived within my means, I had rainy-day fund set aside, I paid for short- and long-term disability policies at work. Well with Lyme disease all that was useless. At the time when I was employed, I did not have a diagnosis, so all the disability policies are useless until you have a diagnosis. Without that they won’t pay a dime. In my case it wouldn’t have mattered anyways cause Lyme is not covered. It’s the same thing with Fed and state disability, the governments don’t recognize Lyme disease as a “disease” or as a “disability”, so you are not eligible for any of those disability programs. Ditto goes for your medical Insurance. They don’t cover anything Lyme disease-related because the CDC/govt doesn’t recognize it as a disease. Most of your Diagnosis, treatment and medical cost are all 100% out of the pocket expenses. It takes everything you have, then takes everything you don’t have, and then it puts you on the brink of “I don’t know what to do next”. This is a really tough one, because you have to keep on living and you want to keep getting better, but there is a point where you don’t have the means to do any more and you have to live with the way you are. It’s a cruel reality but that is how it is with this disease.
Well, that is pretty much it in a nutshell summed up as short as I could do it. Sorry you all had to read this sad stuff, it sure isn’t any fun. But again, my main goal with this is to spread awareness as much as possible of the real reality of Lyme disease and co-infections. I know myself I had no clue of its existence until I was diagnosed with it. I knew nothing about it and everyone in my life I talk to seems to be unaware of the reality of Lyme disease including most doctors and medical staff I run into, which is a very scary thing.
Many (most) people do not get the bullseye rash so if you know you have been bitten then go to the doctor right away to get treatment before it has the chance to spread. Do your best to be aware and protect yourself. In addition, if you have unexplained symptoms but test negative, seek out doctors that know about and will do the more involved testing. It’s expensive but can save you years of sickness. Most people don’t know that, if left untreated, Lyme bacteria can infect all different parts of the body including the heart and the brain and can even be fatal. I encourage anyone reading this to pass it along and help spread awareness. Also, I will link below some Lyme Websites and organizations, if you want to Learn more about Lyme disease.