Neurologic Progression (2019-Current)
Updated: Feb 19
By the beginning of February 2019, I was FINALLY starting to feel back on track after suffering a multitude of post-op complications (re: hip surgery in 2018). It felt like the worst was behind me! My hip no longer felt painful and my muscle strength was improving. I still had work do with rehab but the feeling was so enjoyable! Just a few days later, I was working an overnight shift... something went haywire in my back while helping lift a patient onto the triage table. This progressed quickly and painfully, leading to a diagnosis of L5-S1 right lateralizing disc herniation, secondary radiculopathy (compressed nerve, causing pain, numbness, weakness) and associated back spasms (of quadratus lumborus mm). Unfortunately, being right lateralizing, it partially impaired use of my right leg for a bit, putting an increased burden on my surgical leg (the left leg). Due to the referral pattern of the herniation, I developed bilateral groin and hip pain. It was unbelievable...I was injured, painful and out of work AGAIN! Steroids were prescribed and after an epidural, I was able to start Physical Therapy. This is when I met the amazing Dr. Rachel Kronke (my primary rehabilitative specialist at Proactive Physical Therapy and Performance Center). She has been trending my case and recovery every step of the way.
The first few weeks of PT were tough. There was slow but positive improvement each week! In April, I developed a very small, painful nodule (almost blister like) on my right foot, perpetuating my limp. The podiatrist was unsure of the cause and scripted a short course of steroids on the off chance it was a spider bite. Within 48 hours of starting steroids, my body felt flu-like (a now routine steroid response). While it seemed to help with the nerve pain, an onslaught of dermatologic (skin) and rheumatic (muscle/joint) symptoms followed. I developed a sinus infection, trouble breathing, severe long bone pain (along the femurs, humeri, shins and forearm), and an intermittent fever with diffuse muscle/joint pain. My body developed a severe rash with regions of coalescing hives. My skin hurt everywhere, any sensation was excruciating. Any temperature, hot or cold, felt scalding. I was mounting more allergic reactions to various products....My pain was at an all-time high, hypersensitive to every stimulus. This went on until the end of May 2019, during which my list of antihistamines, topical creams and pain medications were exhaustive. I cannot even begin to explain how grossly uncomfortable those 2 months were. It was pure misery.
By end of June 2019, I was again feeling more functional and gaining forward momentum in my back recovery, however my body felt far from okay. Both hips began to feel more abnormal, my muscle spasms were occurring in new locations, and my spine was painful to almost every motion.
And so, began my third wave of specialist consultations...
July 2019 was my last functional month. The good and bad days were equally shared. It was one of my best birthdays. I was rebounding from a run of bad days. My little brother flew in and the family surprised me with a spa day at Skin Deep Spa, and celebration at Proactive PT. We were able take a drive into Rocky Mountain National Park and do a short hike up Trail Ridge Road! This positive momentum lasted for a few weeks!
By now, the pattern is probably becoming apparent and you know what’s next…
By mid-August 2019, I again suffered massive full body dysfunction. It was literately as it sounds, I had no control over the onset. There was no trauma or activity outside my restrictions. I all of a sudden just couldn't. This was the most debilitating dysfunction yet and it has been an uphill battle since. My ability to walk had become impaired, the lateralizing leg pains were progressing, my limb numbness was now bilateral, there were shooting pains into the front, back and side of my legs, severe muscle weakness and fatigue, random ice cold temperature changes to my hands and feet, skin discoloration, muscle fasciculations (twitching) and the onset of extremity tremors. Both my hips declined even further, lifting my legs became almost impossible (unable to even lift my foot, without assistance, to put on a shoe). My symptoms flared… night sweats, IBS-like GI upset, ice pick headaches/migraines (as if ice picks were stabbing into the back of my eyes), dizziness, trouble sleeping, trouble thinking, multiple new areas of joint pain and inflammation, progressing hypermobility, incoordination, paresis (weakness) and again, waxing and waning symptoms of Complex Regional Pain Syndrome, all unresponsive to a cocktail of controlled drugs.
Multiple MRI's were ordered by various specialists. Mounting concern for MS-like disease started to become center of the conversation. Advanced imaging showed that my disc herniation was more paracentral and did not correlate with my severity of nerve-related symptoms. There were progressive degenerative changes, facet arthropathy (arthritis to the facet joints on the back of your spine that counterbalance the discs involved with movement), spinal stenosis (C spine, L5-S1), Spondylosis (C-spine and T-spine). My left hip developed another labral tear (just 16 months post-surgery), greater trochanteric bursitis, glute min insertional tear, tendinosis of glute med and min muscle, with complicating boney changes from the previous surgeon. My right hip was now torn. Both hip flexors were inflamed, and my psoas muscle was spasming. Luckily, none of my spinal changes/brain images were consistent with MS (Thank God).
My body just felt trashed...I was at a loss. My relentless self-advocacy was getting me nowhere. It was this recurrent symptom-pill-symptom-pill-side effect- pill- symptom-pill, on repeat. The best plausible theory offered was that the soft tissue tears to both my hips were secondary to compensating for my neurological symptoms related to my disc herniation. The thing is...now that my hips were massively unstable, my back pain became even more stifling. It felt like a vicious cycle and I was out of compensation patterns. My diagnoses included a plethora of suspicions and syndromes but no definitive cause. No matter how hard Dr. Kronke and I worked in PT, despite my dedication to our strength program and at home rehab, my body continued to grow weaker. Shortly after this, there was tinnitus, photophobia, disorientation, confusion and extreme exhaustion. It was as if each symptom tried to outdo the other.
As difficult as it was, I threw myself into research. My investigation into bartonellosis became unrelenting. I was working the biggest case of my life...had endless supportive research and needed someone…anyone, to help me! My Infectious Disease doctor finally agreed to order Bartonella IFA testing but refused exploring advanced diagnostic methods. IFA results were negative. The ID doc felt this was enough proof to say I did not have bartonella, despite the high false negative rate and sent me on my way. Frustrated and determined, this is when I reached out to Galaxy Diagnostics to pursue testing, seeking advisement with Dr. Breitschwerdt and his team. Through a series of conversations, Dr. Breitschwerdt was CC’d. He contacted me less than 24 hours later, on Labor Day weekend 2019. After a brief correspondence, he so kindly offered to enroll and test me through his Bartonella Study at the Intracellular Pathogens Research Lab (IPRL). Samples were drawn every-other-day for a week (called Triple Draw) and sent with a skin biopsy performed at my dermatologist a few months prior. By mid-September, all samples had been delivered to IPRL. YES!!!! Finally!!!! Dr. B advised enrollment into his study yielded slower results than Galaxy Dx but would provide a means of advanced assessment, my gratitude was overwhelming. During this time, each specialist continued ruling out other possible causes.
My body was screaming for help. I began reading a book by expert plant ecologist, Stephen Harrod Buhner on Complimentary and Holistic Treatments for Bartonella. This book was beyond fascinating and provided a wealth of substantiated scientific information about all aspects of this disease. The pathophysiology and adaptive mechanisms of Bartonella are truly exceptional...a formidable opponent. With the help of Dr. Montana Glenn (Doctor of Oriental Medicine) and Dr. Matt Brenneke (retired ND), we ordered all herbal medications, vitamins and minerals (for areas of deficiency), adaptogens (for immune, organ and adrenal support) and probiotics. Buhner’s protocol was slowly introduced, staging each new medication. My body tolerated it all very well and by end of November, my pain had decreased to 7-8 out of 10. That may not seem like much, but it was instrumental. I was able to wean off all controlled drugs, only needing rescue meds for the really bad days. I cannot even begin to adequately explain how incredible that felt. We implemented an anti-inflammatory diet, with high antioxidant load and low sugar content. Made appropriate environmental changes and became more cognizant of system disruptors. His book was such an exceptional comprehensive delivery of Bartonellosis and provided multiple fields of intervention. The dedication page of this book ended with “…there is hope, don’t give up”, that is exactly what Dr. Breitschwerdt, Galaxy Diagnostics (Amanda Elam, PhD) and Stephen Buhner gave me!
By November 2019, my appointment with National Jewish Health was around the corner. This was my 3rd consult with a rheumatologist (around my 49th consult overall). Expectations were set pretty low given previous experience with mainstream medicine... but Dr. K blew me away. This rheumatologist was methodical, a scientist that was also a practical clinician. She was investigative, comprehensive, open-minded to evolving research in vector-borne disease and supportive of my concerns for bartonellosis, wanting to be CC'd on all results from IPRL and other specialists. After practically repeating every test possible, Dr. K strongly felt that my symptoms were all related to one specific cause, that continued to remain elusive. She diagnosed me with positive ANA, positive SCL 70, an Undifferentiated Connective Tissue Disorder (UCTD), hypermobility and Inflammatory Arthritis. Bloodwork changes are trending toward autoimmunity, with concern for Lupus and Scleroderma. A slew of x-rays, additional advanced imaging, genetic testing, echocardiogram and pulmonary function tests were performed. We ruled-out disease after disease! Dr. K continues to trend my autoimmune status and UCTD component closely.
At the start of the new year.... 2020 was not so welcoming. And no, not because of CV19 (although that has made rehab difficult). Instead, it welcomed me with additional new injuries further impeding my ability to walk. I had a day stay in the ER (likely viral gastroenteritis), developed another sinus infection, inner ear infection, small ulcerated lesions, another painful foot nodule, had more advanced imaging, sheared my left SI joint, partially tore some lateral fibers of my right achilles and my right shoulder became more dysfunctional. This time, I knew better, as I declined each round of steroids offered! What a way to kick off the new year!
I was reaching my breaking point, desperate for an answer...
Monday…9:33 am…..Feb 3, 2020.... Bartonella results are IN!
Direct PCR, BAPGM Culture and ePCR positive!!!! (All traditional IFA/antibody testing remained negative). I have disseminated Bartonellosis…A definitive diagnosis that explains every aspect of my clinical profile! I was elated and filled with the sweetest vindication but most of all, hope, at a chance for recovery. Such a gift!!!! Funny story, I actually misread the report at first glance. Was so excited to see results, that I skipped right to the IFA and thought I was negative... everything went silent, complete devastation.... only to radically shift into pure euphoric elation after re-reading the report and receiving an email from IPRL confirming positive infection…
In addition to the Small Vessel Inflammatory and Connective Tissue component, I am on the verge of developing another autoimmune disease, have mild Mast Cell Activation Syndrome and multiple sequelae from chronic illness. The successive effects of this disease are vast. In retrospect, I think 2019 was my most debilitating year due to the multiple rounds of steroids prescribed. This further suppressed my immune response and allowed this intracellular bacteria to flourish.
If you can believe it, this isn’t even everything
Now to find a Bartonella Literate Medical Doctor for treatment…
Check out the associated literature on Bartonella's Neurologic Manifestations
Check out the relationship between Bartonella and Connective Tissue Disorders
Want to learn more on the disease --> Understanding Bartonellosis