Living With Lyme Disease, Part 1

Lyme disease
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Before getting bit by 2 tiny ticks (on 2 separate occurrences, 2 and a half months apart) in the spring of 2012 and being diagnosed with Lyme disease I was healthy and active, enjoying life with my busy family and teaching Early Childhood Special Education.

I was physically fit and active, running, walking, and doing yoga and Pilates. Most of all, I enjoyed spending time with family and friends and being outside.

Lyme Disease Strikes

After the tick bites I became very ill and unable to get out of bed for several days.

I had horrible migraines, muscle aches, a high fever, and was throwing up. I was lethargic and so dizzy I could barely stand. My coloring was pale and my family and friends could tell by looking at me that something was very wrong.

Initially, I went to the doctor and told him about finding a tick on my back in a hard-to-reach area. He asked if I had been to the northeastern United States or if I had a bulls-eye rash. I’ve never been to the northeastern states, and didn’t ever notice getting a bulls-eye rash, although I have had all sorts of strange rashes since then.

No medical testing was performed, but the doctor said I had “tick fever”. When I asked the doctor if that was the same as Lyme disease he said that you can’t get Lyme disease in Missouri.

Much to the detriment of patients throughout the United States, this couldn’t be further from the truth. Unfortunately, the doctor sent me home to recover and said it might take a few days to recover.

Learning About Lyme Disease “The Hard Way”

Four weeks later I still felt very ill, like I had a bad case of the flu. It was getting more difficult to work, sleep and keep my normal everyday routine because I was so uncomfortable and tired.

I made another appointment to see a different doctor and get a second opinion, and he said pretty much the same thing. He asked if I had visited the northeastern US. I never have. He told me to watch for a bulls-eye rash, but (supposedly) if I didn’t see one, the illness would run its course and I would get better.

I’ve learned since then that less than 50% of people with Lyme disease remember getting any sort of rash. He ran tests for Lyme and other tick-borne illnesses, but they all came back negative. Unfortunately, Lyme screening tests are notoriously inaccurate and produce many false negatives.

Lyme disease is an illness that’s hard to comprehend unless you’ve experienced it yourself. To say that Lyme has changed my life is an understatement. But, even on my most difficult days, I have so much that I’m thankful for.

I would like to share more of my story later, but it’s long and I don’t want to overwhelm you. I’ve talked to many other people who have had the same experiences, being told Lyme disease didn’t occur where they live and not received prompt and proper treatment. I believe it’s essential to share our stories with others to bring light to the truth about Lyme, uncovering all the misconceptions (even within the medical community) along the way. Thanks for reading.

Have you ever been bitten by a tick and gotten sick? If so, what tests (if any) were performed and what treatment were you given? Do you feel better now?

Please leave your comments and questions below so we can learn from each other. XO, Lori

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