Update 5: 1 Year and 8 Months into Treatment
Updated: Mar 30, 2022
April 2021- November 2021
89 weeks!!! Can you believe it?! ONE YEAR and 8 MONTHS closer to recovering, rebuilding, and redefining my life. It's odd to think about how quick the path to medical disability was; the rapid systemic deterioration after that cat bite was hard to process at the time. Even harder to process is the exponentially longer time frame needed to heal. To this point I’ve remained emotionally detached from the gravity of it all, both with objective intention (self-preservation) and incidentally (secondary to disease-induced derealization), focusing on the immediate. Now after 89 weeks of treatment, things are coming back “online”, the boundaries are starting to blur and this summer, it ALL emotionally collided.
Since my last update, there have been high points, progress, and periods of empowerment to extreme lows, disincentive, and periods of discouragement; that is chronic illness in its most basic form.
Restraint | Regulation | Influence
Redirection | Discipline | Tolerance
Perception | Recognition | Detection
Expectation | Confusion | Grief
It is an ebb-and-flow patient in affliction, faithful in prayer and joyful in hope. I met a dark version of depression this summer following an onslaught of taxing medical-related adversities. Through a culmination of duration, limitation, and isolation, I was suffocating in the stillness. I had trouble finding my path out, but through the grace of God, gathered my strength, reset my mind, and am again finding contentment in the face of chaos.
It is amazing how easily time becomes distorted; how quickly weeks roll into months…and soon, into a new year. Just like that. Lucky for you, it’s allowed me to revamp this update more than a few times. Earlier versions were shaping into something (accurately, but quite unequivocally) depressing. And while, most of this disease is just that…not pretty (nor easy), my goal here has always been to empower and build relative support by delivering constructive information…to whomever may pull from it…other patients, family members, medical professionals…whomever. With that, I’ve been debating what to focus on here… These most recent weeks have brought great reprieve for my mental, emotional and physical sense. And while my innate pull is to bury this summer’s suffering and focus on the gains and gratitude, bypassing those important aspects would be a disservice for other patients experiencing the same. This disease, like many conditions considered rare, are already riddled with inherent disservices…even after diagnosis.
Navigating Conventional Medicine:
“Only with careful attention to both the individuality of illness and the universality of disease etiology can physicians most effectively care for their patients”- AMA Journal of Ethics.
Human medicine is not an easy field to navigate, but you do eventually learn how to manage the disjointed and disconnected aspects of our system. Most of that comes from your pre-diagnosis experience as you are punted from one specialist to the next. Your case becomes more convoluted in complexity, while conventionalism further fragments the medicine into silos and sub-silos; your body is divided into separate domains and the acknowledgement of respective interconnection is absent. I experienced this time and time again prior to diagnosis…and somehow STILL experience it post diagnosis. Not every physician has it in them to be a clinical investigator. Instead of being open and inspired by emerging research, clinical relevance becomes replaced by the comfort of predetermined algorithms. For the patient, this comes at great cost.
Before finding my current team, I saw over 45 doctors spanning 25 specialties. It's strange to know that the general lack of physician awareness regarding zoonosis directly impacted every aspect of my life and yet for each of those physicians, yielded no lingering inconvenience. But their ignorance is another’s suffering. If any one of them would have engaged in my concerns rather than disregarding and diminishing them, a lot of my pain, loss and sacrifice would have been avoided. I think that is something that really pulled me under this summer. Like Lyme Disease, Mycoplasma, Babesia and other co-infections, Bartonellosis is rarely recognized or considered, as such, etiology remains elusive, standard workups remain non-specific, while your list of symptoms/syndromes grow faster than your infections. This cost is even greater for patients in other countries. Through this blog, I have met so many incredible patients who are truly on their own. It’s heartbreaking. Their country lacks professional resources, access to information, access to treatment (despite diagnosis), and freedom of choice for physician. In addition to all they’re enduring, they go without, left to decipher all aspects of this disease alone. Time and time again, emails demonstrate the same scenario and even with all the frustrations of our system, living in the United States of America is an incredible gift; freedom and liberty are a privilege.
Chronic illness is constant work:
People with this disease can present very differently. In progressive cases like mine, there are no limits to its destruction without treatment. Unfortunately, that becomes the reality for many VBD patients due to a widespread lack of disease awareness. As your body endures chronic pain and inflammation, it is also under chronic stress. With that, insomnia, brain fog, and fatigue set in perpetuating the process. The daily shifts are unpredictable, and that unpredictability becomes each day’s expectation. And just when you think you’ve figured it out and found balance…a little more is thrown your way.
Between April - September, my hand pain became excruciating. Both were often immobilized via wrist splints; my foot pain (combo neuropathic pain and small vessel inflammation) was at an all-time high. I lost my ability to drive a vehicle, struggled even more with basic daily life (ie-couldn’t hold a utensil, get dressed, had difficulty eating, was unable to even push the buttons on a tv remote at times) and walking my dog Pancake, become unbearable. Unable to use my hands, and often unable to productively use my feet, destroyed any aspect of my remaining independence and demolished what little worldly outlets I had left.
Around this time, we were well into the 9th month of application requirements for SSDI- Social Security Disability (now 14 months). I was required to meet with a cookie cutter MDSI physician who took no interest in even discussing my difficulties of daily living. The day of assessment my resting heart rate was 134 bpm, could barely get a deep breath, barely walk, hands in braces, tremendous radicular (shooting) pain… His multi-page report included a robust description of an imaginary physical exam and was full of falsifications, and negligent assessments. His level of creative fabrication was appalling. As a fellow doctor, such commitment to misinformation is a breach of oath and ethically intolerable. It is exhausting. A month after that, my denial letter arrived… somehow riddled with even more inaccuracies, it at least acknowledged my combination of impairments, but stated said impairments were not enough to affect my ability to consistently and reliably perform a full-time job.
I’d like to see anyone of those docs go through 1 day of these symptoms and syndromes then tell me it’s not enough. I am continually shocked by how hard it is to get help, how extensive these applications are and repeatedly astonished at their expectation. I’ve never worked so hard. Maybe that is the intention, to make assistance so difficult to attain that patients retreat. Meanwhile, there have been 3 rechecks with Dr. Barter, a new patient consult with a neurologist specialized in my form of Vector borne disease (Neuro-Bartonellosis), serial bloodwork, EKGs, survey cultures (stool and urine), pending MRI's (of neck, thoracic spine, lumbar spine and TMJ), x-rays (hands, knees, TMJ), my annual Echocardiogram (heart scan), Pulmonary Function Tests (PFT), Arterial Blood Flow Imaging, ultrasounds (of kidneys, bladder and breasts), one mammogram and multiple specialists rechecks (…and new referrals). Amidst all the new and updated patient paperwork, I started the belabored disability process all over again, retained an SSDI attorney for the appeal, turned 39 yrs old, lost my psychologist of 2+ years, and to objectively refute MDSI’s false statements, scheduled what would be a special kind of torture, Functional Capacity Evaluations. Believe me when I tell you IF you have health, YOU HAVE EVERYTHING. Protect it (and invest in it's protection) at all costs.
Functional Evaluation Assessment:
Okay, the entire purpose of these evaluations is to document and evaluate an individual’s capacity to perform work by using a structured process to observe and measure said patient’s deficiencies. It evaluates performance deficits, safety issues, functional abilities, strengths, skills, and capacity to perform specific daily function-related tasks as it relates to work and social activities. Needless to say, I am fully aware of my current capacity and hold no false narratives on what my body and mind can and cannot do. I deal with it daily! I also knew it was NOT going to be easy, but never thought it would be this hard. With each test, my inability to successfully perform, or complete said task became more overwhelming. It was such an in-your-face moment. One test after another - my fine dexterity, balance, grip strength, ability to follow verbal directions or perform certain physiologic range of motions... I fell twice, was unkind and eventually had a well-overdue breakdown, just sat on the evaluator’s floor crying. To see my limitations on display, repeatedly in such a manner, was infuriating but also, frightening. Yes, getting it documented was exactly why we were there but to know what I was and to have no control over what I have (temporarily) become, was cruel…just miserable. A part of me truly thought I’d perform better.
The sessions were broken down and spread out over a couple weeks’ time (spanning July to August). This was to capture the dynamic shifts seen with bartonella, undifferentiated connective tissue diseases (UCTD) and polyneuropathies (what is termed ‘dynamic disabilities’ and “internal or invisible illness”) but also to allow my body to recover before continuing. It required a lengthy travel time, was mentally taxing, physically frustrating, and having to endure it twice (without my psychologist), was distressing.
When it was all said and done, I was left with grief and sorrow. I met a breaking point and gave in to a wave of anger and resentment toward innumerable medical professionals… my psychologist for leaving me during the time I needed her the most, and the countless physicians that misdiagnosed me, disregarded my concerns and led to the unnecessary delay in appropriate diagnosis and treatment. None of these emotions, regardless of how true, offer long-term benefit, but nonetheless needed to be felt, accepted, and processed. It's part of healing. The final report was 37 pages…a 37-page outline of my current functional capacity. Mom said it captured everything she sees in my day-to-day struggles perfectly. Me though, I don’t think I’ll ever read it.
Depression and Mental Collateral:
Mental health is a relative term when it comes to chronic illness, especially this disease. I have been managing PTSD, cognitive impairments, a slew of neuropsychiatric changes, dissociation, disease-induced anxiety and depression since 2019. While each can feed off the other, I want to specifically focus on depression here. It’s NOT situational depression (loss of career, income, independence, reproductive health, vitality, lifestyle, relations) albeit those factors are present and a lot for any human to carry; this is pathophysiologic depression (functional and chemical changes resulting in internal injury CAUSED by disease).
Systemic, chronic forms of this Bartonella are associated with a plethora of neurologic abnormalities. This can wreak havoc on your body and brain. Microglial Cells play a major role in the Central Nervous System’s immune response. These cells are in constant surveillance, and are involved with infection, inflammation and clearing cellular debris and dead/injured neurons. These cells are also one (of eight) that Bartonella intracellularly infects (chronically lives in). The Journal of Immunity recently published an article indicating that immune cells of the brain (specifically microglial cells) play a key role in ‘brain inflammation-induced depression’. In the simplest form, the infection itself creates inflammation that changes your baseline internally and manipulates your psychiatric profile. This is well documented and manifests as depression, anxiety, suicidal ideation, hallucinations (auditory and sensory), dissociation, derealization, depersonalization, episodes of rage and so much more (I have experienced multiple). The study further determined that increased microglial activity led to an increase in the release of chemicals within the brain that create depression and influence or heighten our perception of pain.
The physiology of both create further stress and compromise = a downward spiral of inflammation = immune, endocrine and nervous dysfunction + HPA Axis (Hypothalamic-Pituitary-Adrenal Axis) disruption (the exact scenario bartonella thrives in).
After time, inappropriate regulation of the stress response links to a wide array of pathologies including autoimmune disease, affective disorders, and major depression
These are incredibly simplified visuals, but the basic principle: By means of internal and external disease-induced factors, Bartonellosis causes significant neuropsychiatric changes further exaggerated by complex hormonal dysregulation. In children, Bartonella takes this one step further and can cause Pediatric Acute-Onset Neuropsychiatric Syndrome (known as PANS) by triggering anti-neuronal antibodies (a topic worthy of its own post). THE POINT = A direct correlation between chronic infection, inflammation, and mental illness exist, and while it might not be surprising to most, it is important to make the distinction. Changes you may bear witness to in a loved one (or if you are a patient, the despair and spiral you experience) are NOT just from the collateral cause and effect. You are constantly left decoding which one is you and which one is your infection. It can be incredibly challenging to maintain perspective as aspects of self-identity deteriorate. More so in children who lack that level of self-awareness. Now imagine being their parent.
From a science perspective, I have always found this pathogen fascinating. Relating to the science allows me to personally disconnect and focus strictly on the medicine. From a patient perspective though, it can be torture. Not only do we have to deal with the 1) Underlying cellular and molecular mechanisms of the disease 2) The neuroinflammatory side effects that create mental illness 3) Chronic, diffuse pain, limitation and decline of varying degrees 4) Slow progression of systemic impairment but also 5) The collateral circumstances (ie-aforementioned loss of independence, loss of function, loss of career, loss of income etc) and 6) Isolation through lack of medical recognition and disease understanding amongst physicians (but also in our general support networks), never mind all other worldly factors.
None of this is pretty, but that’s the truth of chronic disease. I think it is important to talk about and capture these moments. I live in silver-linings and as such, transition perspective toward gratitude. Highlighting the darker side is imperative for people to understand, but even this update is insufficient at doing so. In the world of chronic disease, it only serves as a brief overview, on the minutest of scales, of only a select number of variables. Have kindness for others, support them even if you do not understand, say something in the silence, let them know you care despite the distance, have grace and understanding, try to imagine a life where everything you worked so hard for is slowly and painfully stripped away…your independence, reliability, present and future stability, to wake up one morning and never be the same. So many people I converse with are alone. Sure, illness is tough to be around, can be draining and self-care is important, but eventually you leave and go about your life while the other person has no escape and any attempt at doing so can take days or even weeks to recover. There is strength within understanding and with that, comes encouragement. A few amazing women in my bartonella support group pulled me out of the deep end multiple times this summer and fall. To be able to say one phrase, one word, one thing and it be immediately recognized for all it is! Although, I cannot wait for the day I’m able to meet resolve out on a trail run with my pup or let loose at a concert again.
While it might not make sense, I know this is exactly where I’m supposed to be. This is where my foundation in faith and love for the Lord exist. That there is purpose and no matter the troubles, you can always find a way to live in the moments that make you feel infinite. To be able to engage in your trials and tribulations and still find a type of authentic joy and peace that surpasses all understanding. While I have lost so many worldly things, I have gained within the Lord. After all, there is a worse alternative to grief, and that is being numb...emotionally feeling nothing. For so long, that had been me. The path ahead will continue to present difficulties, my status will continue to have a non-linear ebb and flow, and I may find my way back into that emotional sink hole again….BUT I will Never Quit. I will never stop advocating or stop educating.
Now, Let’s get to the good stuff!
As of November 30th, here is where I am at:
The addition of hydroxychloroquine has significantly helped my hand and especially, my feet pain! It's helped mitigate inflammation and been a great complement to my pain management. I have not needed wrist or hand splints for a few weeks now.
My blood work trends are doing exactly what they should and as of October, my liver values have officially normalized (for now). Rifampin is currently at 600 mg in AM, and 150 mg in PM with Dr Barter’s open approval for regimented increases (by 150 mg every 3-4 weeks until at 600 mg BID). Of course, this is pending bloodwork trends and die-off reactions (herxheimers). We are working toward rifabutin and feeling hopeful about getting there. Still in Phase 3 (….of Stage 1) but moving along!!!!
All other antibiotics (Clarithromycin, Bactrim, Banderol, Japanese Knotwood and Methylene Blue) are still being well tolerated -> My GI tract seems to be holding up well with our probiotic regiment. All c-diff and other survey testing was normal. My clotting factors (like fibrinogen), thyroid, adrenal function (hormone regulation - testosterone, progesterone, DHEA, cortisol) and bone marrow are trending extremely well, same with other diagnostics and yearly imaging:
Heart and Lungs: In comparison to my 2020 studies, both my echocardiogram and pulmonary function tests reported improvements. The previous right ventricular (RV) systolic dysfunction was gone. My mitral, pulmonary, and tricuspid valve regurgitation (which historically shifted between mild and trivial) was not present. The PFT testing was ALSO NORMAL (previously suboptimal in 2020)
IGX Co-infection testing: Evidence of Lyme involvement. Babesia is negative but inconclusive, given a few of my hallmark symptoms. Everything else is currently negative! As treatment progresses, it is not abnormal to be diagnosed with another co-infection. As the bacterial burden of one disease becomes controlled, others can become detectable. My viral titers for HHV-6 are also much improved.
Kidney and bladder ultrasound: Recently I’ve developed more abdominal discomfort in my flank (near kidneys) and upper right and left abdominal quadrant (near liver and spleen, respectively); all areas Lyme and Bartonellosis can invade. Given my 2017 history of trigonitis, ureteral obstruction, kidney enlargement (hydronephrosis) and current interstitial cystitis issues, the urologist ordered an ultrasound. Luckily, all appears normal. There is scar tissue from bladder surgery, but no recurrence of the ureterocele. My bladder is still not fully emptying (not uncommon for IC).
Hydroxychloroquine (HCQ): While this has helped with my pain and inflammation, there is an added benefit here for bartonellosis:
Recent studies have found that HCQ causes the inside of a cell (specifically the lysosome) to alkalinize in vitro (outside of the living body and in a laboratory). This higher pH increases the bacteria killing potential of antibiotics (potentiates antibiotic’s bactericidal activity intracellularly). This was especially noted with Macrolides (like Clarithromycin) and Rifamycins (like Rifabutin which I will be on at some point). Pretty cool right?? Turns out many VBD specialists use HCQ for this exact reason. As a side note - both Dr Barter and my rheumatologist recommended starting lower (at 200 mg once daily) to make sure it didn’t cause a die-off reaction (herxheimer)
Monitoring: It does come with fairly close monitoring (scheduled EKG’s to monitor my QT interval, bloodwork, ophthalmology visits) but 100% worth it with response thus far.
G6PD: Testing of my genetic pathway glucose-6-dehydrogenase (G6PD) was also evaluated prior to starting and found to be normal.
Of course, so many other treatment modifications and discussions have occurred, but those are the most important so far. For any patients out there, here are the summaries of each recheck if you want to see trends and detailed treatment changes.
Recheck 6: March 23, 2021
Recheck 7: June 3, 2021
Recheck 8: August 24, 2021
From a symptom standpoint, my excruciating foot pain and hand dysfunction have been the most limiting factor. With the addition of hydroxychloroquine and the advancement of rifampin, both seem to be a bit improved. I am a little more productive, but still becoming easily confused (and overwhelmed). My derealization is gone and visual shadows, better. My skin is a bit brighter, and my neck wrinkles are not worse, so I guess that’s something. Tremors and exertional fatigue are inconsistent, but not worse, and my joint pain is more tolerable. The myalgia, fascia and spinal pain have remained static. My attitude and emotional connection seem more present. I’ve been more inclined to answer my cell phone when it rings now (rather than watching it go to voicemail while immediately becoming exhausted by the thought) AND had FOUR real conversations…with people who are NOT my doctors. That’s a big deal! The auditory hallucinations are occurring in less frequency, and I’ve been able to walk Pancake more.
About 10 days into the recent increase of Rifampin (~11/20), I did develop a die-off reaction and am still in the thick of it. My long bone pain, fever, muscle/joint pain, fatigue, night sweats, terrible methane gas, photophobia and nausea are all a bit severe. Overall, previous symptom charts are still accurate and encompass present day. The cyclic flares and fever remain, and my body is still quite compromised. But looking at the big picture, I am MUCH better than this time last year and EVEN better than this time 2 years prior.
A major issue has been my progressing neck pain, facial spasms and recurring TMJ trismus. My arms have become extremely weak, especially my left hand (nondominant) and I have difficulty using both. With POTS, it is not uncommon to have what we call “Coat Hanger Syndrome” -
Sub-occipital and paracervical pain that presumably worsens from a decrease in oxygen delivery to the muscles while in the upright position - but in 2019 (secondary to Bartonellosis and an UCTD), I was also diagnosed with rapid spinal degeneration. The changes are at all levels, including cervical stenosis. We are currently trying to figure out how much of this is structural (more degeneration) vs neuropathic sequala of Bartonellosis (+POTS) vs combination.
MRI of my TMJ, cervical, thoracic and lumbar spine are all pending. Recent blood work to evaluate my liver, bone marrow, kidneys and hormones on higher doses of rifampin are also pending. Recheck #9 with Dr Barter will be in person at her Denver location on December 1st!
Unfortunately, as a result of my limitations, Pancake has become extremely deconditioned. Like me, she was highly active. We used to run and hike multiple miles, multiple times per week. Despite efforts to get her exercised, she will not allow anyone, but me to walk her (she is a rescue with a rough background and only trusts one human -> me). Well, we had a “one off” and our best walk to date…she had a blast, but developed a lumbar injury.
During her work-up, x-rays also found ballistic fragments over her right shin from her pre-rescue life. Poor girl!
She is seeing a pain management specialist and doing extremely well now. Through my own experiences, I’ve started her on an integrative and functional medicine plan as well. If only I paid more attention to the pitfalls of conventional medicine in my younger years. Love that girl.
Highlights: Ducks and friends
My best friend, Allison from FSU (we were freshman dormmates) surprised me with a visit while she was in Colorado for business. It was a beautiful summer day and we hung out on the back patio. It was so healing to see her. I love you ally-poo.
My cousin, Kim and her son also stopped by. They were on a cross country road trip this summer. They drove through and spent the day with us. It was absolutely amazing to see family. I am very close with my cousin, Kyle (Kim's brother), but had not seen Kim in many years! Felt like we hadn't missed a beat! Thank you for spending some of your trip with us! Was really special. Love you
We also had resident ducks! 4 domestic ducks found their freedom in the creek that runs behind our property. We were able to spend much of the summer with them and were such a joy. Every morning they’d be out back playing, and anytime you went outside, they would run up the bank to visit with you. They were Khaki Campbells, super social, VERY smart and incredibly playful. Toward the end of fall, one went missing and another survived a very close owl attack. The remaining 3 were rescued together by a farm in southern Colorado! I sure do miss those cuties! They brought so much life to our daily routine, but it sure is nice to not have to worry about their safety.
Whew...that's (almost) a wrap for 2021!! Even though this will be officially published mid- December, I intentionally omitted adding in recent developments. My next update will cover December happenings. We are only 15 days in and already so many changes have occurred. The Christmas tree is up, and our house is feeling so cozy. I love this time of year.
It’s been a while since connecting with you all and truly hope you are doing well. Thank you for all the love, support, and prayers! For patients out there suffering from chronic illness (be it Fibromyalgia, Chronic Fatigue, MS, other VBD..), I hope you feel good enough to find joy in the holiday. Know you are not alone.
Decided to change up the picture collage with a short video :)