Chronic Lyme Disease: Opening Up About the Struggle

Genevieve Goetz's diagnosis of Chronic Lyme Disease changed her life. Read her powerful story here.

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chronic lyme disease

Three years ago, I officially received a diagnosis of chronic Lyme disease. My struggle to get diagnosed, however, impacted my life several years before. In reality, I contracted the disease 6 years before from a tick bite.

Seeking a diagnosis 

I immediately sought out a doctor, but because I showed no Lyme disease symptoms, I was not tested for the disease. Common symptoms can include fatigue, pain in joints and muscle aches. I left my initial appointment convinced I was fine.

But over the next 3 years, I slowly developed extreme, migrating nerve pain. I checked myself into the ER, crying and yelling, but no one ever took me seriously. Most of the staff believed I had a drug addiction and made sure to let me know. 

A Lyme-literate medical doctor (LLMD) finally performed an accurate test for tick-borne diseases on me. I also found out that through the same tick bite, I contracted two additional forms of illnesses: tularemia and Bartonella. But for 3 years I suffered without a diagnosis.

Chronic Lyme Disease doctor and patient discussing treatment

The Centers for Disease Control and Prevention openly disputes the term “chronic Lyme disease,” which likely impacted my chance of being diagnosed. The organization does, however, recognize the term “post-treatment Lyme disease syndrome”(PTLDS).

It got worse before it got better

Like other invisible illnesses, this condition can be incredibly debilitating. Some patients have to stay home and are unable to hold a job, make meals or walk across a room. When I was finally diagnosed with Lyme disease, I was a full-time grad student studying occupational therapy and teaching outdoor yoga part-time.

My first Lyme specialist didn’t prepare me for the struggle of treatment. Doctors prescribed me long-term antibiotic therapy, which means taking pills and supplements so often that it consumed my whole day. Thus began my downfall into disability.

Within months of starting an oral antibiotic treatment with a very prestigious doctor, neurological symptoms took over my life. At first, the antibiotics seemed like the perfect fit. And for some people, these medications work, forcing Lyme to become dormant for the rest of their lives.

Chronic Lyme Disease oral antibiotics

But I am not one of those people. The medicine made me worse. 

I tried tinctures, but they made me nauseous and dizzy. Then, I tried supplements. I tried everything my doctor told me to, but I was still getting worse. Every time my symptoms became more severe, my doctors would hand me a massive amount of new antibiotics to start all over again.

After a year and a half of this horrific cycle, I knew I had to change.

Connecting with others with chronic Lyme disease

I started to use Instagram to tap into thousands of other people with Lyme disease. Lyme doesn’t care about gender, age or race. It can affect us all. I began to read their stories, suggestions, advice, home remedies, treatment tips and more.

Our bonds and knowledge grew the more time went on. We patients with Lyme disease can be the best resource sometimes. I wouldn’t have learned so much about my body or Lyme disease without connecting to others struggling like me.

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