10 Things I Wish I’d Known About Lyme Disease

IV treatment. Pills. More pills. I can't believe I made it through all that. When it could have been avoided...

That’s the little portable pump for my IV drugs. Then there were the pills. More pills. Harsh meds that made me sicker so I could get better. I can’t believe I made it through all that. When it could have been avoided…



It’s 2016, and I’m finally climbing out of the Lyme hell I fell into blindly four-and-a-half years ago. If only I’d known more, sooner.

Maybe I can help someone, somewhere, by offering a few things I was shocked to learn. Frankly, it is damned hard to pick just 10 things. But here goes: 

1. Current blood tests for Lyme are inaccurate half the time. (Newsflash: A new test could be groundbreaking, learn more here.)

2. Not everyone infected with Lyme gets the bull’s-eye rash.

3. Patients aren’t getting diagnosed properly because of the huge controversy in the medical community.

4. Lyme isn’t just about joints. The bacteria can go all over your body including to your heart and brain.

5. Lyme has symptoms in common with other illnesses, so can be misdiagnosed as things like MS and ALS.

6. Quality of life for people with chronic Lyme can be worse than for patients with chronic illnesses like congestive heart failure.

7. The CDC says you can only get Lyme in a few states, but doctors are seeing Lyme all over the US and the world.

8. Just one tick bite can infect you with other bad stuff besides Lyme.

9. Ticks. Don’t. Die. In. Winter.

10. People with Lyme often don’t “look” sick, so they have a tough time getting the support they need.


I bet you have Lyme or know someone who does.  So let’s see how many items we can share here to raise awareness! Go on, then: Who’s ready with item # 11?

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