Living with Lyme

Pella: the newest addition to our family

It's been a really long time since I've posted on my blog. I got diagnosed with Lyme disease in February 2020 (3 months ago). I went undiagnosed for an entire year. My symptoms started in March 2019 and I got diagnosed February 2020. Several months into feeling really sick, my primary care doctor ran a Lyme test and it came back negative. After trying several holistic practitioners and not really seeing much improvement, I saw a pricey functional medicine clinic in Mechanicsburg, PA called Turnpaugh Wellness Center. My doctor ran an extensive panel of blood tests, one of them being the Western Blot test to see if I had Lyme. This seems to be about the best current test out there for Lyme. 

My results from the Western Blot came back positive. What a relief. It was hell dealing with the uncertainty of being undiagnosed for a year. I had some really scary and strange symptoms that made me feel like I might be dying of some terminal illness. Some of my symptoms were:

• difficulty getting a full breath of air
• inability to make simple decisions 
• trouble concentrating
• intense anxiety
• insomnia
• heart palpitations
• rapid heart rate
• extreme sense of fear for no reason
• a feeling of wanting to be alone
• my energy being totally depleted
• muscle aches, especially my legs
• an overall feeling of malaise
• pressure in my head and eyes
• my body feeling very hot but having no fever
• my brain feeling so full that it felt like it was going to explode
• unable to exercise, because of a lack of oxygen but even if I pushed through I would feel terrible afterwards 
• sore chest and throat
• weight loss
• losing motivation
• depression

Most of these were my common experience for several months. Symptoms would come and go but I was almost always dealing with several of these at a time. Some of these symptoms were mild in their intensity, but most of them were somewhere between medium-very intense. Getting my Lyme diagnosis helped a lot because I finally felt like I could start treating something instead of playing a guessing game. I'll never forget how elated I was to find out that I had Lyme. Certainly not something I ever thought I'd say.

There is so much I could say about the last 15 months of my life, I don't even know where to begin or what direction to focus on. I can say for sure that Lyme disease is a life-altering illness. It's tricky because it's often an "invisible" disease, meaning observers don't notice anything with their eyes. Most who suffer with Lyme appear to be normal when you see them or are around them, but there is a lot going on with their mind, body, and emotions that you are not aware of. So please try to be empathetic to folks who have Lyme or any other disease that presents in this invisible manner.

I am currently feeling the best I have since the onset of my symptoms in February 2019. I've had to make a lot of life changes. I've given up my landscaping business because in my current state, I am unable to physically perform the necessary tasks. I've been getting weekly counseling and having in-depth weekly phone calls with 3 dear friends who have also gone through dark nights of the soul either physically or emotionally. I am learning to be okay with my brokenness and vulnerability. Before having Lyme, I was quick to help others in their time of need but felt guilty for ever asking of something from anyone else. My wife and I have had some wonderful conversations and I feel closer to her than ever before. Without her, I don't know how I would have gotten this far. She's truly been my rock. 

My diet is the best it's ever been before. For most of my adult life, I flirted with healthy eating and was eating much better than most people but I was still eating a lot of garbage. I have cut out alcohol, gluten, and only occasionally have something with white sugar or dairy. I'm not saying all those things are bad, just some things I needed to steer clear of based on my blood tests. I tested for a high sensitivity to casein (in most dairy), gluten, and eggs. I haven't really had eggs in a while but that's something I'm hoping to re-introduce at some point. Sometimes I miss the taste of beer but other than that I haven't missed alcohol at all. 

Marijuana has been a godsend for me. I got my medical marijuana card around the time this all started happening last year, and it has helped so much at alleviating many of my symptoms. It helps the most with my low moods, body aches, and low energy. Cannabis really is a wonderful medicine. If you have a negative view of it and see it as a destructive drug, I would advise you to do some unbiased research and talk to a few people who use it as a medicine. The war on drugs that started with Reagan as a result of the hippy movement in the 60's and 70's has created tons of misinformation and wrongful demonizing of several substances that have many therapeutic properties. People abuse all kinds of things, that doesn't mean the thing they are abusing is bad. People are just idiots sometimes. We see the same issues with guns and alcohol. But it's hard to see clearly unless we truly learn to think for ourselves. We all have blinders in certain areas. Life becomes more colorful as we learn to think freely and judge less. 

That's where I'll end for now. During my time off I had been doing a lot of journaling with good old fashioned ink and paper, but I'm happy to be back slapping my dirty mits on these keys. I hope you can gain some insight and inspiration from some of the things I'll be sharing.