What is Lyme Disease? And why is it so misunderstood?


It’s Lyme disease awareness month, so I wanted to shed some light on, what I’ve been learning is, such a misunderstood disease. One that affects everybody and every body so differently, and needs a whole damn lot more understanding. I will keep this brief and try to make it as easy to comprehend as possible, because there is so much incredibly overwhelming information out there. But it’s information that I wish I was aware of much sooner, especially when I was still looking for answers.

Most people think of Lyme as getting bit by a tick, finding a bullseye rash, and taking two weeks of prescription medication to get rid of it. Sometimes that’s the case, but more often it’s not. For many people, myself included, they don’t remember ever getting bit by a tick. They never saw a tick, probably because many ticks that transmit Lyme are in the nymph stage and are the size of a poppyseed. They never felt a bite, probably because ticks numb the area of the skin that they bite into. They never saw a bullseye rash, probably because rashes disappear in under 24 hours and are sometimes in places where we would never think to look. So, they continue on with their lives, not knowing what’s going on underneath the surface. Days, weeks, months, or even years go by as the disease spreads throughout the body, making itself at home in any bodily system that it can get into. If left untreated, it eventually begins to attack those systems, and two weeks of prescription medication will no longer do the trick.

By definition, Lyme disease is an infectious illness caused by the bacteria Borreila burgdorferi. When a tick bites someone, the Borreila releases a spiral shaped bacterium known as Spirochete into the human blood stream. With their twisted shape, the Spirochete are able to easily burrow into tissues and bones, anywhere and everywhere in the body. Sometimes, these ticks carry other strains of bacteria, which also cross into the human blood stream and show up as co-infections - but that’s a whole separate topic.

The main reason this disease is so misunderstood and overlooked is because of the way it manifests, which looks different for every single person. The spirochete are sneaky, they love to hide all throughout the body, and sometimes can stay uninterrupted for years. But when they’re triggered by stressors - whether that’s physical, mental, or environmental - they fight back. Hard. They attack different parts of the body and brain, which is why symptoms are so varied from not only person to person, but also day to day. After the spirochete are found in their super sneaky hiding spots, many times they then move to another part of the body and present themselves in an entirely different way. Hence, the seemingly “unrelated” symptoms.

The disease may show up through digestive issues, cognitive dysfunction, skin rashes, mast cell activation, insomnia, unregulated body temperatures, respiratory complications, psychological disorders, joint swelling, muscle pain, hormonal imbalances, chronic fatigue, brain fog, memory loss, allergic reactions, and so much more. And because of this, so many people remain undiagnosed and untreated, because their symptoms seem to be so random. Sometimes symptoms appear in one single form, but typically they attack a multitude of systems, all at once. The immune system becomes extremely weak trying to fight the disease, which is why many people develop autoimmune and other chronic diseases alongside, because the immune system literally begins to attack itself.

The most heartbreaking part about this disease is the number of people who take their lives from it, because they cannot physically endure both the physical and mental pain any longer. So, damn right this illness needs awareness, and a whole lot more of it. I’m still learning so much about it every single day, because there is just so much information out there and so many conflicting thoughts. But like I said in the beginning, I wish that I could have found a post like this when I was still looking for answers, or even when I was first diagnosed, to better understand what was happening in my body.

I hope that by sharing this information and more my own journey, which I am still going through and learning from everyday, something will click with someone else out there. Whether you have this disease yourself, know someone with it, or are still in the “looking for answers” phase, I really truly hope this brings a little more understanding. And if you are someone with Lyme disease or any other illness, please do not hesitate to reach out.

If you’ve made it this far, thank you so much for reading. Please share this with anyone you know who may benefit and continue spreading awareness.

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