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    Home Chronic Pain Chronic Lyme Disease: Opening Up About the Struggle

    Chronic Lyme Disease: Opening Up About the Struggle

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

    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.

    Chronic Lyme Disease woman connecting with others online

    I worked very hard with regular treatments, using a PICC line and administering my own medicine at home. Throughout this process, I was in and out of ERs and wheelchairs, a total nightmare. I discovered I need to detox because my body can’t do it on its own.

    When I moved to IV antibiotics, I knew how to manage the essential detox process, which is extremely important. It felt like wringing my body out like a sponge from the inside. I began to sauna daily, and everything got better. Other useful resources, like detox baths and lifetime support, also came to me online. 

    Getting better means different things now

    During my 3 years of serious illness, I experienced depression and trauma. I felt like I had lost myself and my entire support system, including almost all my friends and eventually my entire immediate and extended family.

    The crushing loneliness and rejection from able-bodied people can be worse than the disease itself. Since I didn’t look sick, people who had been in my life forever started to doubt me and my sanity. I wasn’t bloody, bruised or scarred. But I was sick nonetheless. 

    Life with a chronic illness is unpredictable, but accepting that this was my reality and finding things that made me happy kept my hope growing. My idea of what getting better means has changed a lot. I know I may never get back to my past self – to that girl in her 20s living out of a backpack and traveling throughout Hawaii. But that girl is still alive inside me.

    Now that I’ve stopped antibiotics for 6 months, I’ve gotten a lot better. I’m going through PTSD treatment with a Lyme psychiatrist, which has helped me process what has happened and move on.

    How yoga helped me overcome

    The other large piece of my healing is yoga. It was a huge part of my life before my sickness, and I’ve had to adapt my practice to work with my symptoms. I can’t do 90-minute vinyasa classes anymore, but passive stretching like yin yoga helps with my muscle cramps, anxiety, and peace of mind.

    Restorative yoga complements my more difficult yin poses, and it feels good to just rest and enjoy the moment. The determination yoga creates in me as an individual also helps during the tough times.

    I very recently started my own chronic illness yoga class. It’s been a dream of mine since I became sick and disabled, unable to leave the house or care for myself. I had to really change what I considered my practice was.

    My own body has changed, so I’m aware that my students’ bodies may be going through things that I can’t understand. This is important for safety, so I try not to push them too hard.

    It’s also helpful to connect with my students mentally. Being sick is exhausting. I like to be able to offer some softness, a kind face and a space for them to be with themselves without constant worry or doubt. We practice simply to feel good, not for the perfect alignment or challenging inversions.

    Check out gentle yoga poses below:

    If you have a chronic illness and want to practice yoga, it’s possible. Have fun with it. Practicing is for your health and your heart. Start a journal that you write in before and after each class to help you see what kinds of classes and teachers work for you. 

    Looking forward

    I’m often asked the same questions:

    • How do you get through this?
    • How do you live the life of a sick person with all the dreams of a healthy person?

    Our society prioritizes able-bodied folks and completely leaves behind those of us who are different. Sometimes it’s hard to watch on social media because they look too much like me.

    But other times, the power of others gives me the energy to live. We also live in a time where we don’t have to be isolated. Technology can save lives. It saved mine. Behind every computer is a person just like you. Our hearts are the same. We all want everyone to get better.

    Editor’s note: The CDC states that “Lyme disease is an infection caused by the bacterium Borrelia burgdorferi.” The organization further states that the term “chronic Lyme disease” is used sometimes to describe symptoms and conditions in those with Lyme disease, and that it has also been used to describe a wide range of symptoms in “people who have no clinical or diagnostic evidence of a current or past infection with B. burgdorferi.”

    Due to the confusing use of the term that the CDC notes many experts do not support using it. Instead, the organization uses the term “post-treatment Lyme disease syndrome.”

    Do you have a story to share about chronic Lyme disease?

    Tell us about your journey in the comments or email us at info@painresource.com.

    What topics related to Lyme disease would you like to see us explore?

    Email us at info@painresource.com with your ideas.

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    Genevieve Goetz
    Genevieve Goetz began practicing yoga in high school and knew she wanted to be a teacher, especially during her time living in Hawaii. She went on to receive a 250 hr yoga teacher certification from Wake Up Yoga in Philadelphia. While Genevieve was studying occupational therapy, she became extremely ill with lyme disease. After 3 years of being disabled and home bound, she has adapted her yoga practice to help ease symptoms and deal with the stress of being sick everyday. Genevieve now lives in Castleton, loves to garden and write and continues to work on her on health journey. She can be found on Instagram at @lymeyogawarrior and on Facebook at Yoga for Lyme Disease. She specializes in workshops such as yoga for chronic illness. Bringing peace to her community is important and rewarding for her. She also loves to teach gentle, yin, restorative, vinyasa, beginner, outdoor and chair yoga.

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