12 Things I Wish People Knew About Lyme Disease

May is Lyme Disease Awareness Month, and over on Instagram, I’ve been sharing some tidbits about Lyme disease that a lot of folks don’t know (I certainly didn’t before I came down with it). Lyme is a disease that most people have heard of but is incredibly misunderstood.

Being a Lyme Disease sufferer is exhausting because of the disease itself, but also because of the incredible amount of advocacy work you have to do for yourself and your disease. There are so many questions to answer and misconceptions to fight!

Since I was diagnosed six months ago, I’ve been collecting the most frequently asked questions I get and figured I’d pull them together into one post to finish up the month of May. Hopefully this post will help clear up some questions, and if you would like to know more, I highly recommend checking out the documentary Under Our Skin and the sequel, Under Our Skin 2, to get a good overview of why Lyme is so controversial and what it’s like to live with it and treat it.

1. Everything about Lyme Disease is controversial.

This is probably the first thing you should know about Lyme Disease. Everything (yes EVERYTHING) about it is controversial. I’ve had multiple health care professionals say to me that Lyme is *the* most hotly debated topic in the medical community right now. We’ll cover some of why it’s so controversial later in this post, but what you need to know is this: all this controversy hurts exactly one group of people—the patients. It makes navigating the entire process—from getting diagnosed to affording treatment—100x harder for sick people. Which is just…wrong.

2. There is no reliable blood test for Lyme Disease.

This is maybe the most important piece of information I can give you, and something I wish I knew before I got sick: there is NO reliable blood test for Lyme Disease. A negative Lyme Disease test does not mean you don’t have Lyme Disease. I should know– I had two negatives before I was diagnosed.

If you walk into your family doctor and ask for a Lyme test, they’ll probably give you the standard test that misses roughly 55% of cases of Lyme. And worst of all, many health care professionals don’t know that it is this inaccurate. There are more sensitive tests out there that are more accurate, but they aren’t perfect and are extremely expensive (and rarely covered by insurance).

Lyme, at its heart, is an immune-suppressor. The Lyme blood tests are testing for Lyme antibodies in your system. If Lyme is suppressing your immune system enough that you aren’t producing the antibodies—guess what? You get a negative test. Many people don’t test positive for Lyme until *after* they’ve started treatment.

This is why the vast majority of Lyme doctors consider Lyme disease to be a clinical diagnosis—based off of symptoms and history—and not a laboratory diagnosis based off test results.

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