5 Things You Need to Know About Lyme Disease

April 27, 2016 | Posted in: Chronic Illness and Diagnosis, chronic illness; support, insurance companies, Lyme Disease, Physicians

Most of what I know about Lyme 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.

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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 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 along the way:

Chronic Lyme exists.

Like mermaids and werewolves, you can add it to the list of things you’ve been taught to believe are mere fantasy (or nightmare). Chronic Lyme is a real and extraordinarily unpleasant illness. Have I ever seen a real mermaid or werewolf?
popular-1229835_640 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 a UTI. They do a culture and you take the appropriate antibiotic like a good boy or girl but the UTI 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. And current CDC guidelines make obtaining long-term treatment difficult. In some cases, our doctors can face disciplinary actions for continuing to provide care. The cost of this care is generally not covered by insurance (as many insurance companies do not recognize chronic Lyme as a condition requiring care) and can range anywhere from $200-$1000 for a single visit to an LLMD (Lyme Literate Medical Doctor). 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 improving while you receive antibiotic treatment and then worsening when you stop. It could also be through IGeneX testing.

You may well have more than Lyme.

That nasty little tick probably gave you 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 you feel terrible because you have more than just Lyme. It’s likely you encountered a generous tick like I did and his gifts can be difficult to return.

The full moon will turn you 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 it is a real and ugly thing. (Remember the mythical werewolf?)

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Bug spray is your friend.

I live in Florida where, to me, Lyme disease was a myth. I knew nothing about its symptoms or what that bull’s-eye 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 bull’s-eye rash. I said no because I didn’t know what that was. Only my infectious disease doctor held up a picture of a bull’s-eye 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 your doctor says about whether or not Lyme exists in your state. They do not turn around when they see your state line approaching. Use bug spray. Check for ticks. Know what a bull’s-eye rash looks like. Know the correct way to remove a tick.

People with Chronic Lyme disease are not “crazy.”

At least, not any more so than you are. 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.

What have you learned about Lyme disease along the way?

If you think you or a loved one may have Lyme disease please find an LLMD near you.

Feature image courtesy of Pixabay

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5 Comments

  1. Astrid
    April 28, 2016

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    Wow, I didn’t know many of these things. As someone not suffering with Lyme but who has read quite a bit on it, I did know about coinfections but not many of the other things.

  2. Stacey Philpot
    April 30, 2016

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    Before I had Lyme, I wouldn’t have known a single one. I didn’t know a single person with Lyme. It can be far meaner than many realize!

  3. Jack Mulligan
    July 1, 2016

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    i didn’t know that ticks left a sort of signature bull’s-eye rash when they bit you! I’ve always been a little bit scared of ticks and lyme disease since I learned about them when I was young. It’s good to know that there is a telltale sign that you’ve been bitten by a tick to look for. Thanks for the information!

  4. Kasi Linard
    July 2, 2016

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    Thank you !

  5. Harold S.
    December 18, 2016

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    Lyme disease is in fact insidious. Alert, the “Bulls Eye Rash” occurs if only about 50% of cases. The Bulls Eye Rash is your body’s reaction to the initial infection. The co-infections are an issue for sure but if you delay treatment, more than 6-12 months after infection, Lyme will become most difficult to eradicate.
    Stacey, please expand a bit more about your battle with Lyme given you have CVID as well. I didn’t think I would meet another person with the terrible combination. Not having an immune system to fight infections makes Lyme even more frightening…. I know, I have been in the battle for 6 years now.
    Blessings to you for the work you are doing and awareness you are creating.

    Harold S.

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