Understanding the Complexities of Lyme Disease: A guest series by Genevieve Goetz

Understanding Lyme Disease (Part One)

Today I’ve invited my friend and fellow Lyme warrior, Genevieve, onto the blog to facilitate a series on understanding Lyme disease. The complexities of this illness often leave many friends, family, medical practitioners confused or in disbelief about the realities Lyme patients live with. So our goal with this series is to unpack the facts of the beast that is Lyme disease and raise awareness for the many warriors across the globe.

By Genevieve Goetz

My journey in life drastically changed when I was diagnosed with Chronic Lyme Disease. I currently live in the beautiful, rural Hudson Valley of NY. Besides writing, I love to garden and grow my own food. Being in nature is so healing for me. I have been practicing yoga for years, and have been teaching for over four years. I am trained in Vinyasa and Prenatal, and love to teach in unusual places like a nonprofit conference room, a government housing center, universities, and farms. But I also love the traditional studio setting.

I traveled for most of my twenties, lots of time in New England/New York area, Hawaii, Japan, and Philly (my hometown). I studied Creative Writing and Photography at a small university, and now due to my illness, I am really using my writing skills and passion, and receiving great feedback and publishings. Having my pieces out there online helps me connect to a great community of fellow Lyme Warriors, who inspire me to continue on my path.

An Intro to the Lyme life…

Lyme patients have to not only take on the burden of healing a disease, they have to constantly explain things they don’t even understand. Not all Lyme patients know how the body works, so going through such a scary medical experience for a long time can be detrimental to improving health. Doctors have their own language, so it is easy to not understand.

The interweaving of your body systems may be a mystery to you. People may even tell you this disease doesn’t even exist.

I started studying Occupational Therapy about two years ago. I took two semesters of Anatomy and Physiology, and Physical Pathology, Medical Terminology, and Kinesiology. Since my Lyme diagnosis and three years prior of misdiagnosing, I have had to put school on pause. But the knowledge stayed with me because I was experiencing such a severe, chronic illness and want to heal.

My experience as a Yoga Teacher and student of Occupational Therapy has given me knowledge on how to survive during these drastic times. Exploring what yoga poses aid and assist in my treatment, practicing deep breathing techniques, and having a mat to center myself has been a blessing. Learning how to create patient-centered treatment plans from an Occupational Therapy perspective has helped me create my own goals and consistent lifestyle of quality healing.

Because of my research, I can determine if scientific theories are coming from a true medical research background, or are just plain false. Having the knowledge on how my own body works has given me great clarity during flare ups and other extreme situations. It’s also helped me keep up with doctor “lingo”, even in the worst of pain.

How does Lyme work? Genevieve Goetz unpacks the basics of Lyme disease in part one of this series.

So what is Lyme disease?

There is so much contradicting information, that it’s hard to put the puzzle pieces together on how this all works. Lyme Disease is transmitted when an infected deer tick bites a person and inputs infectious bacteria, such as Borrelia burgdorferi and Borrelia mayonii, into the person’s bloodstream and tissues. There are many different strains or species of Lyme bacteria, along with other coinfections, that can be passed from a tick bite.

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Spirochetes form and grow into a large, thick spiral shape. They attach to any cell in the infected person’s body, enter the cell, and cause a release of digestive enzymes so the cell dies. Then the spirochete can act as the former cell of the host, by wearing the outer cell lining of the initial (now dead) cell. The body’s immune system will check it out, recognize this outer layer as a regular cell and allow the spirochete to grow and travel. Thus spirochetes mimic any system of the body, which leads to a lot of misdiagnoses.

Chronic Lyme can go into remission, once enough Lyme cells are killed and toxins processed out of the body. But this disease is forever, so always check up with your doctor or specialist. Spirochetes survive in the host for a long time. So even when the symptoms disappear, not all of the spirochetes leave your body. It’s also important to note that Lymies should not donate blood or be organ donors.

Readers, the next article’s topic is up to you! What medical questions do you have? What do you need clarity on, or would like some real discussion on? Please send us your questions through this form and we’ll answer in the next article! Thank you so much!

Connect with Genevieve:
Email | Twitter | Instagram

For some starter resources on understanding Lyme and prevention visit my Lyme Disease resource page.

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  1. chelsea w says:

    I still remember when I was finally diagnosed with Lyme disease and sent off to an Infectious Disease Specialist. He literally told me- “Lyme didn’t exist.” I was appalled and so angry after all the research I had done, after what I had been told, and after FINALLY getting a diagnosis. When they had me take an ID photo after the consultation, I gave them the middle finger. Many doctors seriously don’t know how to handle Lyme disease or understand it. So thankful I later found some that eventually did! You really do have to count on yourself and listen to your body to “do the work” though, I think.

    • Kami says:

      It’s heartbreaking how many of our stories are alike. There is such a lack of awareness and understanding of this disease! I agree that we do have to listen to our bodies and advocate for our own health – and/or have close family or friends to advocate for/with us! Much love to you, Chelsea. Thanks so much for reading and sharing your story both here and on your lovely blog!

  2. Valerie says:

    Thank you for this. It really helps to have helpful articles that I can share with family and friends who may not understand my Late Stage Lyme Disease diagnosis. xoxo Valerie

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