Muscle and Joint Progression (2017-Current)
Updated: Sep 5, 2022
Little did I know this incident and it's ensuing collateral would change my life forever:
On January 24, 2017, it was early morning, and I was just starting my emergency shift at a specialty hospital. Within the first few hours I sustained a deep cat bite to my left index finger. Wound care was performed immediately and the HR department was notified. Unfortunately the HR director could not find an available doctor to cover the ICU floor. As a result, they informed me that I did not have permission to seek immediate medical intervention and must wait until the swing doctor arrived for her shift. This delayed my ability to seek medical care till later that afternoon, almost 6.5 hours after the incident. Because of this, my first dose of antibiotics (Augmentin) was not started till early evening.
By the next morning (January 25th), I was flushed, had an elevated heart rate and was developing a deep red streak (lymphangitis and cellulitis) extending from the cat bite up to my mid bicep region. For the same reasons above, there was again a time delay in my ability to leave the ICU. Luckily, our internist understood the urgency, took lead and other specialists came together to take my open cases. By the time I arrived at the human hospital, a few more costly hours had passed. The streak progressed beyond my shoulder into my neck and there was mild lymphadenopathy in my axilla. I did not feel sick but also did not feel right.
After being admitted to the hospital, my lymphangitis and cellulitis improved with IV antibiotics but my systemic symptoms progressed. By the next morning, I was experiencing severe pain, nausea, vertigo, shortness of breath, and extreme fatigue...just a general feeling of being unwell. Because I had a history of motion sickness and vertigo related to migraines, the doctors were rather unimpressed by the development and deemed them unrelated. They treated my symptoms supportively and discharged me a few hours later.
After arriving home, my infected finger continued to swell and symptoms worsened. My finger became blanched white. There was black tissue overlaying a small pustule or abscess that developed at the initial site of infection. This ruptured releasing a pea size amount of mucopurulent material (pus). That release of pressure led to improvement of my pain, a return of normal color to my finger and resolved the vertigo and nausea. However, my status continued to wax and wane. For days I fought through the developments of fatigue, confusion, insomnia, shortness of breath, joint pain, severe inflammatory reactions, finger pain and axillary pain.
Despite my best attempts at continuing a normal lifestyle, within 24 hours of finishing the prescribed antibiotic my body entered an aggressive downward spiral.
By February 6th, 2017 my symptoms escalated. I developed swelling (of my face, and legs), reactive airways, trouble breathing, hives, progressive constitutional changes and a transient heart murmur. At this point, I strongly felt I had Cat Scratch Disease. Ultimately (many urgent care, ER, work comp and specialty doctor visits later), the traditional, 5-7 day blood cultures were negative and my heart scan showed no evidence of endocarditis (a heart valve infection). Despite voicing my concerns, not one doctor agreed to order a simple blood test to check my bartonella antibody titers. I reached out to my close friend and colleague, Dr Rich Giroux (an Emergency Physician in South Florida). We thoroughly discussed my trends, my concern for bartonella and my history of immune compromise. Rich openly sought discussion with his colleagues at the hospital and offered support in everyway possible. He is THE ONLY physician I had direct contact with who concurred with my suspicion and was concerned I had contracted bartonella. Because of my history of an 'immune deficiency' (diagnosed in undergrad), I held a higher risk of developing chronic illness from this disease. Ultimately, I started doxycycline but was only able to get a few doses in before my PCP requested discontinuing it. Because these symptoms developed before trying doxycycline, I was reluctant to stop. Her reasoning held some value since my symptoms were hallmark for a systemic inflammatory response similar to an allergic reaction and so the antibiotic was discontinued (what a mistake that was).
From this point on, there wasn't much progress on the physician front. The Doctors seemed bewildered and stuck on the phrase "the wound itself (the point of inoculation) had healed". Despite the fact that Bartonella can seed infection to locations distant and local to the site of inoculation (ie- my index finger), they declined my request for testing and repeatedly disregarded my concern for this zoonotic disease. The top suspicion was a delayed antibiotic reaction to the Augmentin and one ER doc had the nerve to tell me it was stress (yup, my heart murmur, hives, swelling and hyperdynamic state was nothing more than stress; GMAFB). Eventually, Immunosuppressive doses of steroids were started hoping to quell the inflammatory response and improve my difficulty breathing. My swelling and malaise persisted. Later an infectious disease specialist concluded the symptomology was secondary to an 'Immune Mediated Polyarthropathy' (a condition where your immune system starts attacking it's own joints and other tissues). He too suspected it was all secondary to a delayed penicillin-based reaction. The general advisement was to continue supportive care and wait it out. By the end of February/beginning of March 2017, I was off steroids and weaning off albuterol. The symptoms were manageable, but not gone. Work Comp released me at MMI and I started to re-enter recreational activity and cardiovascular re-training.
During the months that followed, I developed what seemed like little incidental soft-tissue injuries while exercising. It was one after another, after another. By June 2017, I had torn my left hip (presumably from running). I had never experienced such a deep-seated pain, where you could literally feel every aspect of your anatomy at every second of the day. The joint was on fire. For months on end, the issues compounded. A series of escalations and new developments ensued...the progression of randomized migratory joint pain, long bone pain, more constitutional changes, and THE MOST ridiculous disproportionate inflammatory conditions (ultimately, requiring bladder and oral-maxillary facial surgery; developed dental trismus, TMJ hematoma, pelvic floor dysfunction, hydronephrosis, a ureterocele, trigonitis, multiple allergic reactions/rashes/edema, skin striations, progressing hip dysfunction and a change in my migraine profile and vertigo). My body was caught in a downward inflammatory spiral of unknown origin. It continued to fluctuate, but my concern for an infectious disease (like bartonella) was at an all time high.
Conventional work-ups continued to come up empty and my concerns were egregiously gas-lit. Eventually, I put it to rest and accepted this as my 'new normal'. My support network started to feel overwhelmed by the onslaught of new issues, work became less tolerant and I began withdrawing. As my list of symptoms continued to grow so did my silence. I was processing everything alone, only sharing bits and pieces of the chaos with specific people. Some days felt foreign while others seemed manageable (something that has remained consistent throughout this battle).
By May 2018, I was scheduled for hip surgery (laparoscopic labral repair, bursectomy and femoral-acetabular osteoplasty). In pre-op, my surgeon noted hypermobility which was NOT present on exams prior. Post-op Dr. Philippon reported that my synovial tissue was friable and severely deranged, much worse than expected for the duration of and presumptive cause of injury... Now we know why! 11 surgical repairs were done that day. Interestingly, Doxycycline has chondroprotective properties and was one of my post-op drugs. It was a month-long script at 100 mg twice a day. A part of me felt thankful that maybe this would target any underlying infections (unfortunately, I learned later that doxy is rather useless for bartonella passed the acute period). The first 4 weeks post-op were brutal, sheer misery, but showed slow and positive improvements.
Upon trying to re-enter work, the physical demands of the shift caused an abrupt decline. I developed a severe disproportionate inflammatory response and symptoms of Complex Regional Pain Syndrome (hyperesthesia, tingling, burning, pins and needles, mottled cyanosis on lower limb, inability to tell the difference between hot and cold, severe swelling, excruciating pain and progressive muscle weakness). For weeks, I lost the ability to use my surgical leg and for months, I was unable to work. The point of financial ruin quickly approached and I was faced with the very real potential of losing everything. Fortunately, my mom sacrificed yet again and made the move from Florida to Colorado. She became my live-in caretaker (now 5 years and counting). My local church, amazing landlord, multiple charities and the Larimer County Food Bank kept us afloat while I entered the unavoidable, Bankruptcy. It was humbling and a colossal lesson in humility.
After consulting with more specialists, my hip surgeon, multiple medical professionals and an internist, they were all at a loss. The myofascial tightening (fibrous connective tissue that provides support and protection to your muscles and bones), pain and feedback was excruciating. There was no number of opioids (and these docs gave me plenty) that would touch the pain. The Immunologist later misdiagnosed me with possible Scleroderma, while the first Rheumatologist diagnosed Fibromyalgia and "wind-up" (a response to repeated high-intensity pain impulses leading to nonresponsive or chronic intractable pain). It took 4 months (now the end of September 2018) of pain management, physical therapy, dry needling and prayer for me to attain a minimal BUT livable functional capacity again (just in time for my best friend's wedding).
By December 2018, my recovery seemed back on track. These symptoms were greatly improved and I was able to work more of a full-time shift load. It finally felt like I was healing! My bankruptcy was later finalized and my body felt like it was on the mend. Unfortunately, This success was short-lived and a neurologic injury soon followed. To add insult to injury, this caused an abrupt exacerbation my rheumatic symptoms and led to continued injury and joint breakdown.
Check out associated research and case reports on the Rheumatologic Manifestations of Bartonellosis
Check out the connection between Bartonella and Connective Tissue Disorders