Hear about a woman's Lyme disease journey, one you might never suspect from her beautiful photos published on social media.
On the outside, I am Lena, a 42-year-old fashion-lover with a popular Instagram account and an amazing family. From my photos, you might see a woman without illness. You might even see me in person and think: she’s so healthy. It’s just not possible that she could be ill…
This disbelief is how the story starts for those with Lyme disease: Your family and doctors stop believing you. Your friends fall away and all you have are the memories of being strong; Of being a gymnast, or a dancer, or a volleyball player in high school. Of running off to forest parties as a teenager with friends and camping without sleeping bags under the stars.
Then, it’s the symptoms without explanation. Symptoms of dizziness, joint pain and fatigue; of your body betraying you. The deep weakness that feels as if it’s living in your bone marrow. I took these symptoms to doctors and found disbelief there, too. No one ran a Lyme test– though I did get another diagnosis. It was chronic fatigue syndrome, they said.
On top of dealing with misdiagnoses, our new house in Connecticut had black mold under the floors. My fireplace suffered a gas leak, and my lungs were damaged from the fumes. Additionally, other medications and vaccinations seemed to take what was left of my immune strength, at which point I lost my ability to stand and walk. I used a wheelchair as I slowly lost my ability to read; to write; even to watch TV.
Finally, after many years, I was diagnosed with Lyme, TBRF, and later, with Bartonella and Babesia. Finally, I found doctors and people who believed I was ill. And it was (perhaps ironically) in their belief that I found a certain strength to keep going. I soon hired a practitioner named Daisy White, and since then have been able to regain more than just my functioning–I feel I’m becoming me again.
My journey of recovery has taught me a lot about becoming a self-advocate in the face of disbelief. I’ve also learned that treatments need to be individualized based on our unique health statuses. While I’ve experienced dental surgeries, peptide therapies, heavy metal detoxes, neural therapies, and others including stem cell and exosome therapies– what works for me may not work for every Lyme patient out there.
That’s why my advice for everyone battling chronic illness is to advocate for your own health and educate yourself through online resources and organizations like the Global Lyme Alliance. Push and fight through the ebbs and flows of energy alongside others, and learn through the relapses and crashes what’s necessary for you to get better.
I know you can do it.
I believe you can!
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The above material is provided for information purposes only. The material (a) is not nor should be considered, or used as a substitute for, medical advice, diagnosis, or treatment, nor (b) does it necessarily represent endorsement by or an official position of Global Lyme Alliance, Inc. or any of its directors, officers, advisors or volunteers. Advice on the testing, treatment or care of an individual patient should be obtained through consultation with a physician who has examined that patient or is familiar with that patient’s medical history.
(*Opinions expressed by contributors are their own) A 42-year-old fashion-lover, social media influencer, and Lyme disease warrior. @panthere_instyle