Part 1: I FINALLY HAVE A DIAGNOSIS
As some of you know, my health has been declining for a few years now, with 2019 being my most debilitating. It has been a journey of misdiagnosis, one filled with self-advocacy, frustration, unrelenting faith and a innumerable hours of research; being constantly dismissed by conventional medicine, every step of the way. There has not been much communication on my part. The process of finding a diagnosis, while living with a barrage of systemic dysfunction, was all consuming. This inadvertently led to my withdrawal from family and friends, but chronic pain has that impact on people.
On Feb 3rd, 2020, I received an amazing gift…a definitive diagnosis! The disease is called Bartonellosis, an intracellular bacterial infection, primarily causing my neurologic and rheumatologic symptoms. Advanced testing showed my Direct PCR, Blood cultures and ePCR were all POSITIVE. It is not only a diagnosis capable of explaining all my symptoms and related syndromes but a diagnosis of zoonotic importance (disease transmitted from animals to people)! There is much more to learn about vector-borne disease and complex chronic illness. The links below provide a brief introduction to this disease. Treatment has officially begun. The road ahead holds some uncertainties but I'm determined to heal.
This is my journey (...well, the short version):
Three years ago (Jan 2017), I was bitten by a cat while working an emergency shift. The next day, hospitalization was required and so began my decline. This was THE pivotal moment in my life, and the event that directly shifted my health. In the weeks after, I visited multiple specialists, doctors, urgent cares and the ER for an onslaught of inflammation, joint pain, swelling, skin changes, heart murmur, cyclic fevers, difficulty breathing and immense body pain. By the end of February/beginning of March 2017, my symptoms had improved enough to not affect my overall function. Despite my professional concerns for bartonella, every doctor continued to deny my request for testing. Since then (which is now 3 years), I have been plagued with unexplained delayed healing, multiple joint injuries, degenerative spinal/arthritic changes and suffered from a multitude of inflammatory conditions targeting my joints, muscles, connective tissue, bladder, immune response, vascular system and nervous system. Despite aggressive regimented rehab programs (consisting of PT, Myofascial Massage Therapy, Acupuncture, Chiropractor, Behavior Health Psychology and a structured strengthening regiment), my body continued to grow weaker and weaker. Every bit of forward progress was met by decline within a few weeks.
Overall, I have seen roughly 50 doctors; Multiple specialist consultations in almost every field, some 2nd and 3rd opinions, all leading to a discussion of possibilities and a cause that remained elusive. Variations of the phrase “...you have something, but it's outside my specialty” seemed to be the end result to each visit. After extensive work-up and advanced imaging, this then led to a plethora of possible diagnosis (early onset MS like disease, possible Lupus, possible Scleroderma, Complex Regional Pain Syndrome, Fibromyalgia, atypical sero-negative RA, Small Fiber Peripheral Neuropathy, Chemical Radiculitis, Undifferentiated Connective Tissue Disease...) but never anything definitive. Despite trials of medications to treat my symptoms, my pain became uncontrollable and my functional capability rapidly diminished. This pain eventually became unresponsive to controlled drugs with cyclic flares in between. Every day became more uncertain, I never knew how I was going to feel or function. What new symptom I might encounter or new injury I might endure. The shear magnitude of unpredictability stripped me of my reliability and self-sufficiency. Behind my smile, positive attitude and silent self-questioning, I was drowning.
April of 2019, while recovering from a disc herniation, my derangements acutely progressed. In retrospect, I think this was secondary to multiple rounds of steroids (causing suppression of my immune response, which allowed this bacteria to flourish). The malfunctions continued. Since then, I have torn many joints (both my hips, partial right Achilles, right shoulder, shearing injury to my left SI), have some torn muscle attachments, multiple areas of bursitis, tendonitis, degenerative arthritis, long bone pain (humerus, femur, shin bones, etc), myalgia (muscle pain), and progressive neurological symptoms (weakness, incoordination, tremors, shooting pain, trouble thinking and some days, even speaking, photophobia, tinnitus, numbness and deep radiating pain to my lower limbs). Each day varying in severity and presentation.
Fall of 2019, I was in contact with Dr Breitschwerdt at the Intracellular Pathogens Research Lab at NC State. His research was the only reason my suspicion for Bartonellosis even existed. He is a Veterinary Internist, specializing in Infectious Disease. Dr. B has been researching intracellular pathogens, specifically Bartonella, for decades and is a leading expert in the field. Within minutes of our first communication, he immediately offered to enroll me in his study to pursue testing. A tissue biopsy and multiple blood draws (via triple draw-performed every other day for a week) were submitted Sept 2019. I refused all recommended surgeries to try to stabilize my hips and avoided anything invasive until my underlying cause was determined. Around this time, I started some holistic and complimentary treatments to help support my body while test results were pending. This was based on a book written by Stephen Buhner, an expert plant ecologist, outlining a holistic approach to Chronic Bartonella. Over 112 PAGES of his book are purely dedicated to citation of research. I was able to tolerate Buhner's Protocol and my body had a great initial response! I was able to wean off all controlled drugs by December 2019 and symptoms were a little bit better.
By the 1st of Jan 2020, I again suffered extreme dysfunction followed by new injuries and odd illnesses, taking another turn for the worse. By Feb 3, 2020 we were able to put a face to the disease. The greatest of gifts- I received a definitive diagnosis of Bartonellosis after 3 years of advocating for an answer and experiencing complex multi-system dysfunction on a now, debilitating level. Secondary to this, I have developed Mild Mast Cell Activation Syndrome, a plethora of deficiencies, hormonal dysregulation and am teetering on the fence for autoimmune disease, specifically Systemic Lupus and Scleroderma. All other possible causes have been exhausted and ruled out, the Pain Syndrome, Peripheral Nerve Dysfunction and Connective Tissue Disorder all fit into the Bartonellosis profile.
Mom Captured this photo on Feb 3, 2020 after receiving my Bartonellosis positive test results from IPRL at NC State! To finally have a diagnosis...
I played "This is my Fight Song" by Rachel Platten, on repeat for a solid week :) In 3 minutes and 25 seconds, this song beautifully, perfectly and so accurately captures every bit of the last 3 years of my life, from disability to diagnosis!
So what the heck is it and what does treatment look like??
Continue To 'Part 2: What is Bartonellosis?' to read about the plan!