Maria Johnson discusses her battle with Lyme disease, Bartonella, and Babesia and the many obstacles she's faced in her healing journey.
The Onset of Symptoms
Around the age of 16, I developed a chronic cough, chronic nausea, and upper abdominal pain, but no one could seem to find a definitive cause. A few years later, I was diagnosed with multiple food sensitivities. I cut over 30 foods from my diet, and my symptoms were manageable until I moved to NYC after graduating college. I had swayed away from the diet to indulge in the NYC food scene, but this time around, simply returning to the elimination diet did not help. I continued to feel sick, developed a laundry list of new symptoms, and received multiple abnormal test results that no one could really explain.
I visited more than 10 doctors, and finally an integrative doctor diagnosed me with Lyme, Babesia, and Bartonella in March 2019. And guess what? I refused to believe tick-borne illnesses were the culprit of years of undiagnosable symptoms. I didn’t remember seeing a tick bite, so that couldn’t have been the answer. I even delayed treatment for months as conventional doctors I visited for second opinions said the multiple positive lyme/co-infection test results were meaningless.
When my symptoms (panic attacks, insomnia, knee pain, nausea, poor concentration, chronic cough, headaches, light sensitivity, etc.) began to worsen, my integrative doctor helped me come to terms with the diagnosis. She treated me for four months with multiple antibiotics, put me on a medical leave, and six months later, I was feeling the best I had in years! I thought this was the end of my Lyme journey.
Facing a Major Setback
However, in March 2021, I got sick with an unexplained acute illness, developed erythema nodosum, and proceeded to test IgM positive for Rickettsia and Babesia. These co-infections came back with a vengeance and presented many new symptoms: gum inflammation, fatigue, full body muscle aches, neuropathy, vivid dreams, and shin pain to name a few. I quickly learned what a herx was, developed POTS, spent months in vision, vestibular, and physical therapy, lost the ability to work and drive, and even needed leg surgery due to nerve damage and a muscle herniating through the fascia.
Looking Back on it All
Lyme has robbed me of some of the prime years of my twenties. I used to be extremely active, work around the clock, travel often, play multiple games of softball on Saturdays in Central Park, and function on little sleep. Although I am not able to do these things anymore, I now realize I wasn’t living the healthiest lifestyle. Yes, I have had to change many things in my life, but I take it as a positive. I began to educate myself on alternative treatments and have been implementing them into my life ever since. Recently, I have started sharing my story, connecting with fellow Lyme warriors, and decided to use my skill set in graphic design and photography to help advocate and create awareness in the Lyme community. Although I am very much still struggling daily from symptoms due to multiple setbacks (COVID x2, a concussion, multiple injuries, a surgery, etc.) I am very hopeful.
My advice to others on a similar journey is to learn as much as you can about Lyme disease and co-infections, treatments options, and other things that could be keeping you sick, such as mold and dental issues. Also, always advocate for yourself. There are many in the medical field that refuse to believe chronic Lyme exists, but when you find the ones that hear you and see you, it will make all the difference in your healing journey.
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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.