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5 Things I Learned About Lyme Disease After My Symptoms Didn't Go Away

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Most of what I know about Lyme disease I learned one of three ways:

1. Watching “Under Our Skin: The Untold Story of Lyme Disease.”

2. Speaking with my Lyme-literate physicians (LLMD) and other patients within online support groups.

3. Living my life with Lyme disease.

I watched “Under Our Skin” for the first time while sprawled out on an oddly-shaped recliner tilted towards the television in my room at the Candlewood Suites in Southfield, Michigan. With one eye patched and Rocephin slowly oozing through my PICC line, I found myself wondering, “What is this feeling? Why am I crying? And laughing?” And then I knew: I am not alone. This is my story. I have found my tribe.

My infectious disease doctor was an amazing man who I came to deeply love and respect. But like many in his field, he felt my symptoms would most likely resolve as a result of six weeks of IV antibiotics — even at this late stage in the game and with the knowledge that my immune system was a car with three wheels and no engine. Watching these strangers on screen, who somehow became “my people” in the space of an hour, prepared me for the possibility turned reality that Lyme wouldn’t be making its exit as quickly as I’d hoped. This comes first on the following list of things I’ve learned about Lyme disease along the way:

1. Chronic Lyme disease exists.

Like mermaids and werewolves, you may be able to add it to the list of things you’ve been taught to believe are mere fantasy (or nightmare). But chronic Lyme is a real and extraordinarily unpleasant illness. Have I ever seen a real mermaid or werewolf? No. But after all the hoopla about how chronic Lyme is imaginary, I’m inclined to believe other things, like Santa and mermaids, might be getting a raw deal as well.

Think of it like this: You get an infection. They do a culture and you take the appropriate antibiotic like a good boy or girl, but the infection doesn’t go away. Now you have to take more of the antibiotic or maybe you have to take it for a longer period of time. This has been my (and many others’) experience with Lyme. It’s stubborn. It doesn’t go away when it’s supposed to. It simply disregards the “go away” memo.

Are there plenty of people who catch Lyme early and watch it go riding off into the sunset on its horse like it’s nothing? Of course. I just wasn’t one of them. Current CDC guidelines can make obtaining long-term treatment difficult. In some cases, our doctors can face disciplinary actions for continuing to provide care. I’ve found that the cost of this care may not be covered by insurance, as many insurance companies do not recognize chronic Lyme as a condition requiring care. Some people may ask, “How do you know you still have Lyme?” I’d say the answer is different for each patient and their doctor. But it could be as simple as still having symptoms, or your symptoms could improve while you receive antibiotic treatment and then worsen when you stop.

hand holding different types of medication
Stacey’s medication supplies.

2. It’s possible to have more than just Lyme disease.

That nasty little tick can give a couple of coinfections. I was aware of coinfections before that day sitting in the Candlewood Suites, but I had no idea what a large part of my daily life they already played. I didn’t know my doctor had already tested me for several or that he would eventually send me to a local doctor for even more testing. I didn’t know the local doctor would take one look at the purple lines I’d been accumulating across my body and declare, “That’s Bartonella; we’ll do the test but I’d bet my medical license on it.” (His medical license is safe because the test came back positive.) So, it’s possible to feel terrible because I have more than just Lyme. It’s likely I encountered a generous tick, and his gifts can be difficult to return.

3. The full moon will turn me into a beast.

I’d heard other Lyme warriors talk about this but didn’t fully understand it. It made no sense to me. How could this be possible? But eventually, a pattern developed. I would feel inexplicably terrible. Exhausted, in pain and unsure of why, I reported these facts to my husband who would respond, “I did notice tomorrow is the full moon.” I don’t know why this is a thing. I only know for me, it is a real and ugly thing.

4. Bug spray is my friend.

I live in Florida where, to me, Lyme disease was a myth. I knew nothing about its symptoms or what that bullseye behind my right knee meant. In the months spent bouncing from specialist to specialist after the rash appeared, many asked if I remembered being bitten by a tick. No, of course not: I never saw a tick. One asked me if I remembered seeing a bullseye rash. I said no because I didn’t know what that was. Only my infectious disease doctor held up a picture of a bullseye rash (after I’d tested positive) and asked if I remembered having ever seen one of those on my body. “Now that you mention it….” Also, ticks don’t care what my doctor says about whether or not Lyme exists in my state. They do not turn around when they see my state line approaching. Use bug spray. Check for ticks. Know what a bullseye rash looks like. Know the correct way to remove a tick.

5. People with chronic Lyme disease are not “crazy.”

Please stop acting like this is all in their head. Support them the way you would any other person currently engaged in the fight of their life. It will mean far more to them than you may ever realize.

Editor’s note: Any medical information included is based on a personal experience. For questions or concerns regarding health, please consult a doctor or medical professional.

Follow this journey on Chronically Whole.

The Mighty is asking the following: What’s one thing you thought on the day of your or a loved one’s diagnosis that you later completely changed your mind about? If you’d like to participate, please send a blog post to Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

Originally published: April 28, 2016
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