85% better, 100% stronger: How I Fought for a Lyme Diagnosis and My Life Back

Read Marissa Tavella's personal journey through the misdiagnosis of Lyme Disease, the struggle for proper diagnosis, and the path to recovery and advocacy.

The weekend of August 1, 2020, I went hiking in Montauk, NY for the day with friends. I came home, went in the shower, and found a tick attached to my stomach. At the time, I had no idea of the necessary precautions or to save the tick to have it tested further. I chose to bring up the occurrence to my primary care doctor at the time to which they replied: “If you have any flu like symptoms or see a bull’s eye rash, please let us know”. I had no symptoms at the time that would have made me concerned I had contracted Lyme Disease. In the Winter of 2021, I began to have my first initial symptoms (joint pain in my wrists and knees) making riding my bike, attending workout classes, and other physical activities challenging. In May 2021, I received my first dose of the Pfizer COVID-19 vaccine which began the onset of “typical” Lyme symptoms (fatigue, light sensitivity, muscle weakness, migrating pain, chronic migraines, food allergies/sensitives, GI distress, unable to regulate temperature, etc.). In February 2023, I came down with “Flu like symptoms”. I had joint pain, weakness, extreme fatigue, nausea, and muscle aches that lasted a little over a week. The week after I attended a concert, came home late, and woke up early for an appointment. I noticed in the morning I felt extremely weak, my hands were trembling, I felt a little lightheaded, extremely fatigued, but assumed it was from lack of sleep and just getting over the “flu”. At my appointment, I became ill where I became extremely dizzy, weak, and nauseous to the point of passing out. When I woke up, I was pale, lightheaded, nauseous, and drenched in sweat. The dizziness continued to come and go throughout the rest of February and March resulting in me having to take a leave of absence to find answers as driving became a safety concern.

By September 2023, my symptoms were as followed: 

• Extreme fatigue and migraine/pressure like headaches that could last for weeks. 
• I had 24/7 vertigo and dizzy spells that made me feel jittery and lightheaded.
• I had impaired thermoregulation that would cause heat/cold intolerance, night sweats, and random sweats during day.
• My eyes became affected resulting in blurred, double vision, and dry/burning eyes.
• I developed sensitivities to medications, foods, lights, sounds, and smells that previously I was fine with.
• I would get a pins and needles sensation in my face, neck, chest, and both arms after eating specific foods that lasted 30 minutes before I’d have “dumping” response.
• In addition to hair loss and extreme shedding, my scalp became sensitive; spots on my head became tender to the touch as if I had a rash.
• I had periods of neuropathy where my left arm and leg went numb, and a shooting fire like pain that went down my legs.
• I had constant migratory pain in my head, eyes, neck, chest, ribs, back, joints, gums, which led to TMJ pain.
• I experienced increasing Anxiety and Depression which triggered OCD tendencies.
• I had trouble with brain fog, including poor memory and concentration that I could no longer fill out my own medical forms.
• I suffered from air hunger, shortness of breath, chest pressure, drops in blood pressure when exerting myself, and high heart rate, which made it difficult to stand, walk, or be active in any way.
• If I over exerted myself or attempted to move my body, it took at least a week to recover. I had muscle twitching, muscle weakness, and tremors.
• I had tinnitus or a ringing in my ears.
• In addition to developing gastrointestinal symptoms (nausea, diarrhea, and constipation), I had unstable blood sugar, malabsorption concerns, and a significant amount of weight loss.
• Changes in my skin were common where I bruised easily, got cherry angiomas, had eczema like rashes, and dry skin.
• I had muscle twitching, stiff neck/neck clicking upon movement, increased motion sickness in vehicles, and insomnia.
• My limbs fell asleep more easily.
• My hands and feet were always cold/would turn a pale white or purple color due to poor circulation and blood pooling.
• CT scans and MRIs indicated new cysts had formed on major organs that weren’t their prior.
• I also had muscle wasting, pelvic floor dysfunction, bladder and kidney inflammation, and re-occurring UTIs.

Throughout 2021 to 2023 I had seen an Orthopedic, Holistic Chiropractor/Nutritionist, a Plastic Surgeon (to possibly address TMJ pain), Gastroenterologist, 2 Psychiatric Nurse Practitioners, ENT, Oral Surgeon, Dentist, Endodontist, Neurologist, Neuro Ophthalmologist, Gynecologist, Rheumatologist, Somatic Coach/NLP Practitioner, Primary Care Provider, Cardiologist, as well as many other doctors, nurses, and specialists that had seen me for various hospital stays and urgent care visits. All of which misdiagnosed me with a range of conditions, such as Anxiety, Irritable Bowel Syndrome, Fibromyalgia, Chronic Fatigue Syndrome, PCOS, and even a thyroid disorder. None of which had suggested being tested for Lyme Disease. I was told: “If all these tests come back normal, you should really consider Anxiety medication” and “It’s just mind over matter, you just have to go out there again and do the things you used to love doing”.

On September 23, 2023, I sought out alternative medicine and saw a Kinesiologist who specialized in chronic conditions. After discussing my symptoms, looking over previous bloodwork/testing, and performing muscle testing, I was officially diagnosed with Late-Stage Lyme Disease, Babesia, Bartonella, Anaplasmosis, Rocky Mountain Spotted Fever, Epstein Barr Virus, and other pathogens that have come up over time. I’m currently 85% back to normalcy. I can go for walks, currently work part time, and my lingering symptoms are manageable compared to before where I was unable to care for myself. 

Throughout this journey, I helped create a community of people battling Lyme Disease & Co-Infections that have quickly become my “Lymitless” family. I became a part of the NIKKI +Lyme frequency device trial. I was featured on a podcast episode of Bioenergetics Beat and the Project Lyme Social Media pages to share my healing journey. Through all of this, I’ve learned not only how to find myself again, but how to educate and share my knowledge with those whom are also fated to have this disease. My advice for anyone? Always listen to your body, because you know your body best. It’s NOT all in your head. If your doctor won’t listen, FIND ANOTHER WHO WILL! Be your own biggest advocate, because all it takes is one to finally listen to what your body is saying. Also, no matter how hard the healing journey gets, keep looking for those glimmers, whether they are big or small. Things that will keep you motivated to keep fighting, even when your view is restricted. They are truly what will help you heal. 

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