“What does Lyme feel like?” by Lori Dennis, MA,RP

I stumbled across the below post last week via a Facebook support group that I’m in (for people with Lyme disease).

I don’t read others’ Lyme stories, blogs or articles as often as I’d like – for many reasons. Why? I’m interrupted by my toddler. The pain from typing overwhelms. Or blurry vision sets in. (And the list goes on).

In any case, I’m very excited to share this little article with you! Lori Dennis is a Registered Psychotherapist in Toronto, Canada and the author of Lyme Madness, available on Amazon this October.

I don’t have chronic Lyme. My son does. Having been right by his side on this journey for almost four years now, and having witnessed the suffering of hundreds of others both in person and online, I am qualified to tell you what Lyme feels like.

It’s different for everyone. But there are many symptoms that are common amongst most sufferers. Some Lyme sufferers get much harder hit than others, depending on so many factors. Some never recover nor do they even get a respite from their condition. Many die from this disease. Either their body eventually gives out or they die by their own hand because it can be just too torturous to bear.

As Lyme-literate MD, Joseph G. Jemsek says, “Most of my HIV patients used to die … now most don’t … Some still do, of course. My Lyme patients, the sickest ones, want to die but they can’t. That’s right, they want to die but they can’t.” 

Lyme feels like you are living in a daily torture chamber. The symptomatology can differ from one hour to the next. Most commonly, it feels like you have a chronic flu every single day for years on end, with symptoms that include but are by no means limited to: indescribable fatigue while simultaneously feeling wired; dizziness; wooziness; migraines; a deep ache from head to toe; nerves that fire without notice resulting in electric shocks; an internal storm; sleeplessness; anxiety; malaise; depression; nausea; visual and auditory sensitivities and disturbances; brain fog; grogginess; a loss of mental sharpness; memory loss; a leaky gut; stabbing and burning sensations; muscle tremors; and more.

These sensations can all be felt in the course of one hour, one day, one week. The body is constantly crying out for help, telling the sufferer that something here is terribly wrong and you need to pay close attention. So sufferers learn to tune in to their bodies, trying to determine what is causing or exacerbating the latest symptom and how best to respond. And there are a myriad of ways to respond which, for the most part, amount to a moment-by-moment guessing game. And sometimes, there is absolutely nothing you can do but simply bear with and try to breathe through the latest symptom that is shouting out the loudest at that moment in time.

I’m sure I haven’t described it perfectly. And I know that many sufferers can offer even more gruesome details of what it feels like to have Lyme. What matters here is that the world needs to understand that chronic Lyme is real. That it is affecting millions worldwide. That the conventional medical community continues to turn its back on sufferers. That the number of cases is growing exponentially around the globe. And that we need to understand this disease and find helpful medical solutions … now.

Thanks to the CDC and the IDSA, Lyme sufferers, with all of their daily struggles, are forced to be warriors on this medical odyssey — navigating this disease primarily on their own, with very little guidance. It’s time that the medical community stop negating and debating the existence of this chronic illness and start listening to the sufferers and their suffering. Before long, they too will be affected. Maybe then they will get off their high horses and pay attention to this undeniable level of anguish and affliction.

What I like most about this featured post is that the writer doesn’t even have Lyme disease. Her son does. The way she speaks on the subject would convince anyone that she herself has the illness. She’s also a passionate spokesperson, which I greatly appreciate and respect.

I’ve been meaning to feature other people on my blog for quite a while now, and am so glad to finally be doing so! Keep an eye out for more in the future. I figure it’s a great way for you, the reader, to learn about life with Lyme without me being the constant voice. There are so many voices out there, with an estimated one-two million people affected by Lyme in the United States alone.

We just need to be heard.

 

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Article from a Web page, Lori Dennis:
Dennis, Lori. “What does lyme feel like?”: Linked In. n.p., 6 Sept. 2016. Web. 6 May 2016..

Article from a Web page, no author:
“The Facts.”: Lyme Disease Challenge. n.p., n.d., 6 Sept. 2016. Web. n.d.