Update 6: 2 years and 8 months into Treatment
Updated: Mar 1
December 2021 – January 7th, 2023 | Part 1 - Part 4
For months I found myself sitting down to start this update. Fervishly wanting to create, I watched the vertical line steadily blink as my constraint and struggle to initiate laid idle. Unable to find any words, my pen has been dry and as each month passed, the scope of treatment updates compounded. I was paralyzed; engulfed by the overwhelm and expenditure of this disease but also that of which these updates require. Do you know that feeling? It’s not really procrastination; maybe more self-perseverance (or just unmitigated exhaustion). Either way, I’ve done it now, over an entire year has passed without ONE treatment update.
As multiple preoccupations ended, the pull to produce began. Little by little, each section has been slowly defined. My intent was to summarize and collate the last 13 months into one fluid, streamlined update. Personally, I just need to feel caught up. Despite multiple attempts, it's become apparent that this goal is impossible. There isn't much about this disease that's short-winded. It's a ton of information, every day, all the time. Somehow the harder I worked to fine tune it, the longer this update became. I've been stuck on how to move forward.
I've decided to keep it as one update, but split it into four parts [Part 1, Part 2, Part 3, Part 4] in order to capture important trends and relevant developments (both personally and medically). Each section is about a 7 minute read and covers the end of 2021 through the beginning of 2023 (with all treatment summaries). That way you can easily pick-up where you left off, like a chapter in a book. Hopefully this makes it less overwhelming for you and easier to take in, especially for other patients.
I can make you this promise though, no matter how mired in overwhelm I may be, moving forward I will never let this much time pass between updates again...EVER!
[PART 1]
148 weeks are in the rearview since starting treatment... that's 34 months of hard work, sacrifice, tears, fierce determination, discomfort, gratitude, grit, sarcasm, sadness, hope, grief, wasted dreams and perspective...
Exactly 2 years, 293 days, and 22 hours closer to recovery
To be able to say that is pretty incredible :) Since my last update, I have officially completed all 3 antibiotic phases of Stage 1, finished Stage 2 [Rifampin] and entered Stage 3 [The start of Rifabutin]. In that time, I recovered from the trauma that was 2021, made it through 2022 and have entered 2023 a little lighter. Without question, 2021 has been my most challenging year to date since diagnosis. A muddled mixture of hope and torture, gains and losses, advancements and declines, impatience, harsh realities and an ongoing conscious reminder of lost time. 2022 would prove to be of equal challenge but in a so many different ways. To be honest, I can barely remember any of it. As demonstrated in my 13 months of silence on the blog, I just disappeared. In order to write this update I've had to back track through countless calendars, notes, audio recordings of doctor visits, electronic medical records, pictures and memories. There are things I don't want to remember and things I hope to never forget. Mostly, I'm astonished at all that's been accomplished (and a bit stunned by all still yet to be done). Let’s get into it!
2022 in Review | The Year of Forward Movement
Over the last year, I’ve reached many milestones, welcomed in my 40’s, had a few treatment setbacks, various new medical developments, piles of new patient and legal paperwork (work comp, SSDI), God’s continued blessings (and His continued experiments on my patience lol), visits from multiple longtime friends, witnessed my little brother marry the love of his life, had multiple positive clinical progressions, been able to interact more with my mom, talk more, breathe easier (literally) and use my hands.
There have been a total of 6 recheck appointments with Dr Barter, two (very long) internal medicine IME’s (Independent Medical Evaluations), 5 new specialist consultations, one Fertility Specialist. two ER visits, multiple PCP appointments, more advanced imaging, a plethora of treatment changes and a dump truck full of debt. For months, mom was critically ill, requiring extensive supportive care and multiple doctor evaluations. Although the definitive cause remains unknown, she is thankfully much improved. Both my pet's also needed veterinary care. Pancake is now fully recovered from her 2021 lumbar injury and my old girl, Cat seems to be leveling out from multiple flares of her chronic IBD and Kidney Disease. One of the greatest challenges of being a DVM in my current situation is the inability to freely treat my own pets. I don't have open access to a clinic, the nursing staff, the employee discount, pharmacy or the diagnostic tools to make things happen. There is an incredible team rallying for me and my pets, to which my gratitude is overwhelming. But, in emergent situations, not being able to "pop by the clinic" to vet them myself, having to pay for another ER DVM's exam fee and be dependent on other's willingness to practice a specific standard of medicine... stings a little something extra. Finding ways to get them the best care without any hospital privileges has been humbling... in the most gut-wrenching and frustrating way. I joke "a vet walks into a vet for a vet" but its my reality, I'm on the other side of practicing and I hate it. Hopefully temporary, but a conscious reminder of all that's been taken, nonetheless.
Of most significance, the best of parts of 2022 offered a collective reprieve from extended solitude and an opportunity to reconnect. I've now officially (and finally) hugged one of my brothers (and a few more close friends), had my first haircut, shook a few hands, got out in the community (visited a local car show) and celebrated my first holiday with part of the family (since the start of CV19). Overall, I’m feeling a bit more like a real human and have enjoyed glimpses of the girl I use to know.
The End of Rifampin
What a long road - Starting January 2021, the addition and up-titration of Rifampin was painstakingly complex. With each dose increase, my body suffered multiple (expected) herx reactions, hormonal shifts, cortisol depletion, elevated liver values, worsening bone marrow suppression, progressing proteinuria (protein loss in the urine) and new bartonella-specific symptoms... while somehow simultaneously showing improvements elsewhere. The body is amazing that way; resilient, forgiving, but always keeping score. About 22 belabored months later (on November 8th, 2022), I officially reached Rifampin's long-awaited target dose of 600mg twice daily. Then 30 days after that (Dec 16, 22), Rifampin was switched out for the heavy hitter, Rifabutin... I made it! Almost 3 years into treatment and I finally made it!!
Here is where I am now:
Rifabutin [Stage 3 Drug]
Getting to this point has brought the most expansive feeling of success; a very long overdue mental win over the ill-defined lingering stagnation of chronic disease. It feels damn great!
For Bartonella patients, this antibiotic is one of the more powerful therapeutics available and is historically associated with the biggest clinical gains. In comparison to Rifampin, Rifabutin has a higher potency, is longer acting (has a half-life of 45 hours) and is fat-soluble (allowing it to be well distributed within the intracellular tissue). Because of this, Rifabutin can penetrate areas 20-50% more than Rifampin (especially in the brain, spinal fluid and connective tissue) leading to a larger die-off (this is why you start with rifampin and work up to rifabutin). As tolerated, staged up-titrations are allowed every 14-21 days. After a dose increase, Herx reactions can be expected around day 8-9. A high fever may be accompanied by the standard variety "flu-like symptoms", increased body pains (arthralgia/myalgias) and skin rash (compared to Rifampin which was associated with low-grade fevers). Because it is longer acting, the herx reactions can take weeks to resolve. Once you're there, you're in it for the long haul. Because of my extent of neurologic involvement and Rifabutin's powerful antibiotic influence, Dr. Barter started me at an incredibly conservative dose of 150 mg three times a week (end goal being 150mg - 300mg twice daily, which is based on body weight).
Of added benefit for Bartonella patients, Rifabutin's potency is amplified when given in combination with Clarithromycin. The plasma concentrations of Rifabutin and it's active metabolite are respectively increased 4 times and 37 times greater than if Rifabutin were administered alone (basically boosting Rifabutin's bacteria killing properties). Add in the use of hydroxychloroquine (HCQ), and this effect is even more powerful. Most bartonellosis patients have some aspect of an uncategorized autoimmune and connective tissue disease. The implementation of HCQ (an anti-malarial commonly used in rheumatic disorders) has a dual purpose here -- in the case of Bartonella - 1) It can help mitigate pain and inflammation associated with connective tissue/autoimmune derangements and 2) When given with certain antibiotics, it will enhance that antibiotic's action inside our cells (where bartonella chronically lives). If you recall back in Update 5:
"Studies have found that HCQ causes the inside of a cell (specifically the lysosome) to alkalinize - This higher pH increases the bacteria killing potential of antibiotics (potentiates antibiotic’s bactericidal activity intracellularly), especially so with Macrolides (like Clarithromycin) and Rifamycins (like Rifabutin)" .
Essentially, Rifabutin with Clarithromycin, in addition to Hydroxychloroquine increases antibiotic influence and bacterial death. Gotta love the synergy of science! Bone Marrow Suppression (low white blood cells, low platelets and low red blood cells, respectively neutropenia/leukopenia, thrombocytopenia, and anemia) is the most common and concerning side effect of these combos; the onset can be abrupt and severe and needs to be closely monitored. Specific to my case, Dr Barter requires bloodwork eval every 4 weeks. While Rifabutin is less likely to cause liver or kidney injury, both will continue to be routinely monitored. Additionally, in the absence of Rifampin (which influences how quickly hormones are broken down), our neuroendocrine supplementation (thyroid, testosterone, progesterone, hydrocortisone, etc) may need to be decreased. So far, my hormones, bone marrow and organ function have remained stable through the transition!
I think one of the more important characteristics to mention here is Rifabutin's robust impact on the Central Nervous System. This antibiotic is much more efficient at crossing the Blood-Brain Barrier (BBB), and Blood-Cerebrospinal Fluid (CSF) Barrier (an interface between the blood, brain and spinal cord). This selective system protects the brain from pathogens, toxins or other harmful substances and only allows certain nutrients and waste to be exchanged. For better or worse, this safety system can also prevent some medications (like antibiotics) from reaching brain tissue. In the case of Rifabutin, this is not a problem. Although this is one of it's major advantages in the treatment of neuro-bartonellosis, it can result in increased nervous system inflammation. To help quell this process, Dr Barter added Magnesium L-Threonate.
Magnesium plays a critical role in neurological conditions and brain-related functions. The most widely used (ie- magnesium citrate, malate, glycinate) have very limited (to no) therapeutic effect for the brain. Magnesium L-Threonate is the ONLY form that specifically crosses the brain’s protective barrier and is necessary for optimal nervous system health. It has been shown to 1) Calm Nerve Inflammation 2) Increase Brain Plasticity (brain's ability to change, grow and adapt neural networks) 3) Support Neurons (functional units in the CNS) and 4) Stimulate the formation of new brain cells (via 'brain-derived neurotrophic factor' or BDNF). Collectively helping with cognitive ability and executive function. Interestingly, studies have also shown it can help restore memory deficits associated with chronic pain (which most bartonella patients have), but in the case of rifabutin, we are primarily using it to help reduce inflammation within the central nervous system. In the face of deficiency (which, to no surprise, most chronic bacteremic bartonella patients are), it can improve a plethora of neurological symptoms as well.
My body seems to be holding up well with the transition: There have been a few major fireworks involving my nervous system and connective tissue. My skin is more hypersensitive than ever (and itchy, even my fluffy organic spa towels hurt), my pain feedback is heightened, my muscles ache everywhere (more than normal) and my Autonomic Nervous System (ANS) is potentially recalibrating lol. A few weeks into Rifabutin, I started experiencing this intrusive, odd abdominal sensation of burning that gradually rises up (from pelvic floor to chest) resulting in severe nausea, lightheadedness, narrowed vision and extreme sweating. It feels like my nerves are firing off an SOS; pure misery in the form of systemic panic.
Bartonella and the Autonomic Nervous System:
In the most basic sense, the ANS (which is one part of our entire nervous system) controls things that should be "automatic" (things we don't have to consciously control). This is critical for regulating resting heart rate (pulse), blood pressure, body temp, breathing and digestion. Secondary to chronic, late stage infection, most Bartonella (and Lyme) patients experience the eventual onset of autonomic dysfunction (known as Autonomic Neuropathy). This type of dysautonomia (Dys- meaning 'dysfunction' and -autonomia meaning 'of the 'automatic' nervous system') can effect our balance between "Fight or Flight" (the Sympathetic System) and "Rest and Digest" (the Parasympathetic System) Our Vagus Nerve is of the longest, most integral and most impactful parts of this system. Not really something you want malfunctioning, but unfortunately it does.
There are many presentations of Autonomic Neuropathy - Among our group of illnesses, POTS (Postural Orthostatic Tachycardia) is the most common (and well-known) form of this syndrome. Like all things bartonella, severity of symptoms are dependent on the host response and can range from mild to debilitating.
So, what causes it?
It boils down to inflammation - Where it is located? How long has it been there? How severe is it? What else is it impacting? What is the underlying cause? We know that bartonellosis (a chronic systemic intracellular infection) manipulates our body's inflammatory status for it's own benefit (coined a "pathogenic strategy"). Overtime, the impacts of chronic inflammation lead to multi-system derangements. In the context of the ANS; our natural control center becomes imbalanced. Making things even more complicated, episodes of dysautonomia can flare Mast Cell Activation Syndrome (another disease often seen with chronic Bartonellosis and other vector-borne illness like Lyme Disease). This results in the release of histamine. As we all know, when histamine is released, inflammation follows. Essentially both syndromes (Dysautonomia and MCAS) can forward feed the other. The outcome, a myriad of intolerable symptoms, increased inflammation, immune dysfunction and wide-spread nervous system disruption.
Like all things bartonella (and vector-borne illness), the secondary complications (of these syndromes) are expected to resolve as treatment progresses and the bacterial burden diminishes. So even though the things I'm experiencing are incredibly intrusive, they are no more intrusive than the disease itself. And given Rifabutin's powerful potency within the nervous system, it seems medically reasonable (and not necessarily a bad thing) as long as I don't pass out. There are alternate therapeutics available for those who can't tolerate Rifabutin's harsh side effects, but if able, at least for me, is well worth the risks.
Here is a little more detail for those interested:
[PART 2]
The Good
It's amazing what the body can accomplish with the right tools. With the negligence of conventional medicine, misdiagnoses and medical mismanagement behind me, targeted treatment over the last 3 years has helped my body calm, reboot and rebuild it’s composure. Systemically, I feel less inflamed, have improved connective tissue integrity and my body feels much more tolerant. My acquired hypermobility has COMPLETELY RESOLVED, all hormones, adrenal function, thyroid, minerals levels and vitamin deficiencies have stabilized on supplementation and multiple related-syndromes (caused by chronic inflammation and infection) are now managed and more controlled. Incredibly, I have found a new Behavior Health Specialist versed in neuropsychiatric forms of Lyme disease who has taken me on pro-bono. Thanks to our good friend Dr Brenneke, I've been able to start weekly IV glutathione infusions (which has helped immensely). And a few times over 2022, I actually woke up feeling good... something I haven't experienced in over 7 years (which was surreal).
For other patients, parents of patients or family members here learning about this disease, I added a visual below that captures the depth of Bartonella's multi-system involvement and quantifies treatment improvements (ie - where I started and the respective management of each sequela). It is intended to inspire... to show what is possible. The unfortunate truth however is that in our situations, one person's gain can have an unintended collateral impact of loss on another. So if you're a patient who's been undergoing treatment for years and are yet to see similar clinical improvements, please don't be discouraged or disheartened. You'll get there!
Pretty amazing, right? Yes, my body continues to require an egregious amount of supplementation and medications to achieve this, BUT that's not the point. The point is that these things... these many things... are moving in the right direction! And that is huge! It's important to celebrate every single clinical improvement where possible, each small win becomes part of a larger gain. Still, there is this very (very) small part of me that subconsciously allows the excitement of progress to be overshadowed by the reality that my body cannot yet self-sustain. You take away one medication and the dominos fall, along with any control you thought you had. Admittedly so, I struggle to picture the eventual point in recovery where medications are slowly discontinued and my body able manage on it's own. I think, for me, this stems from how open-ended our treatment expectations are. Like all vector-borne illnesses, there are no absolutes when it comes to bartonellosis, no perfect models or easy algorithms. So that day does seem far away, but I'm THAT MUCH closer and so proud of each growing positive progression. Just keep fighting, keep clinically investigating and we'll get there.
Multi-Level Spinal Degeneration
As you may remember in previous posts, one of the more complicated collateral consequences of bartonella’s pathophysiology is connective tissue laxity. As my disease progressed, I developed an acquired hypermobility and my connective tissue derangements spiraled. As my hypermobility advanced, subsequent spinal degeneration set in. With herniated discs and bulges effecting my cervical, thoracic and lumbar spine, my neurologic injuries rapidly progressed (re: Neurologic Progression 2019-Current); a plethora of new injuries, collateral spinal deterioration, severe backbone/radicular/neuropathic pain and full-body limitations materialized, halting all Physical Therapy efforts. By fall 2019, the realization that I had become disabled was unmistakable and the possibility of Multiple Sclerosis became the center of discussion. Luckily repeat imaging at the time was not consistent with MS but did confirm worsening degenerative changes throughout all levels of my spine (ie- facet arthropathy, more disc herniations and bulges (especially in my neck), stenosis at multiple levels and bridging spondylosis) Six months after that (Feb 2020), I finally had my official diagnosis. NOW for the GOOD PART -- Almost 3 years into bartonella treatment, the damage comparison is promising -- Repeat TMJ, Cervical, Thoracic and Lumbar MRI HAVE NOT significantly worsened since starting treatment!!!! Even more beautiful, as of December 2022, my hypermobility has completely resolved. Reports attached below for other patients
Repeat Imaging Results 2021-2022
So, what’s worse?
Well, there has been zero progress on SSDI which is mentally, medically (and financially) damaging. I’ve been denied twice, with appeals to both and entered the hearing phase in March 2022. There has been no movement since (keeping in mind my initial app submission was in 2020) and while I shouldn’t be, I’m still somehow shocked by the difficulty and disjointedness of the entire process.
From a symptom standpoint – my GI upset, nausea, feet pain, hyperpigmentation (meds, hormones, ethnicity) and neuropathy are worse. So much so that I slipped down an entire flight of stairs in my house (don't worry the only thing fractured was my pride) and I still require the use of an electric wheelchair when we venture out to larger grocery stores. Psychologically and emotionally, I am having a hard time with death, an unavoidable absolute shared amongst every species on this Earth. I am constantly cherishing every moment with my mom, Pancake, my cat… like it’s our last. Every day, I find myself mourning the future loss of something still very much alive (even inanimate things). At the same time, I remain incredibly disconnected from situations I’d normally be invested in. None of it is normal. I think, as a result of my personal loss these last few years, I'm trying to hold on to everything I possibly can, for as long as I can; especially since my livelihood is still limited. We are working the problem in therapy sessions, but I tell ya, sometimes it's all-consuming.
Illness is never convenient
The most unfortunate part of this disease has been the timing. As someone who's always wanted to have children, my illness occurred at the start of those remaining pivotal years of a woman’s reproductive prime. Now almost 41 years of age, I’m losing time and that feeling is dreadful. In November 2022, I consulted with a Fertility Specialist trained in cancer/complex illness at CCRM – The jest of it -- It isn't impossible, but it is unlikely. Given my age and chronic systemic inflammation (regardless of cause), the likelihood of having any quality eggs at this point is poor. In her experience, Egg Harvesting would not be a good investment (although she is willing to try). It's expected that about 25% of eggs will survive retrieval and of that 25%, roughly 60% will die once fertilized. To get a good assessment, a Transvaginal Ovarian Ultrasound and bloodwork (FSH, LH, AMH, etc) needs to be performed on day 3 of my cycle. If I am a candidate for egg harvesting, she would be willing to work with my team of bartonella doctors to come up with a safe protocol that avoids estrogen dominance (similar to breast cancer patients). Also interesting, AMH (a hormone that estimates egg reserve) can rebound after recovery from chronic disease (but unfortunately, won’t change the fact that the egg quality WILL NOT). I'm coming to terms with the idea that my chance may have come-and-gone but God-Willing, there is still some time left. It just doesn't feel real.
New Developments:
Here is where this update gets a little more difficult. To save on length here, a few major points (ie- my resolution of hypermobility, and new diagnoses of proteinuria, low IgG levels, diabetes insipidus and chronic pansinusitis) will be outlined in the NEXT update. I was hoping to fit it all in, but shortening their discussion (in relation to bartonella) would be a disservice to other patients.
For this update, I want to focus on a revelation that directly impacts my current treatment trajectory and future healing; The diagnosis of systemic mycotoxins and impacts of glutathione deficiency.
[PART 3]