Part 2: What is Bartonellosis? What's my treatment plan?
Updated: Mar 30
What is Bartonellosis?
Although the science is incredible, I do not want to alienate anyone who is non-medical here. For those who prefer greater detail, the two links in Part 1 are very easy and succinct reads while the 'Bartonellosis Education' section of this blog takes a deeper dive into the content.
In summary, Bartonella is a bacteria that lives within the cells of it’s host. It is one of the most fascinating and yet, terrifying pathogens I have learned about, to date. It is extremely stealth, evades immune detection, infects CD34+ progenitor cells of the bone marrow, endothelial tissue (the thin layer of cells that line the interior surface of blood and lymphatic vessels), and microglial cells (a macrophage of the nervous system), to name a few. It can infect multiple species (like dogs, cats, humans, rodents, marine mammals), and is constantly evolving and adapting to each host.
Classified as zoonotic bacterial infection, Bartonellosis causes a Small Vessel Inflammatory Disease and Connective Tissue Disorder that can affect multiple organ systems; it has a propensity for endothelial lining and collagen, respectively.
Clinical presentations can range from asymptomatic to mild to severely debilitating. It depends on the health of your immune system. Some people are even asymptomatic, and if your immune system is strong, the infection can be contained. This is one of the reasons I believe 2019 became my most debilitating year. There was an overabundance of system disruptors and multiple rounds of steroids (likely further weakening my immune system). Symptoms can include muscle and joint pain, long bone pain, nerve pain, weakness, tremors, muscle twitching, skin rash and striations, headache/migraines, hypermobility, and depression to name a few. Symptoms can be constant but more commonly are described as cyclic and migratory (with variations in severity). This variability further convolutes it's distinction to doctors and can make early diagnosis extremely difficult.
Being an intracellular bacteria, Bartonella will commonly infect sites locally but can also be carried to areas distant to the initial point of inoculation. Bartonella is capable of causing a low grade inflammatory state, which it thrives in. One of Bartonella's defining characteristics is it's ability to simultaneously release new bacteria into the blood stream every 4-8 days. There is a coordinated cycle to the chronic bacteremia (transient bacteria in blood stream) until it invades new cells, which further assists in minimizing immune detection. Think about that, a simultaneous release from all infected areas!! (This is why it is recommended to have blood samples attained every other day for a week - coined "triple draw"- to capture this release). Mine seems to be every 6-8 days which is followed by a low-grade fever, severe increase in my symptoms and extreme exhaustion.
Research has shown strong correlation between Bartonellosis' potential to mimic and/or trigger autoimmune disease, something I am teetering on the edge of. There is also potential for complex neurologic symptoms affecting the Central and/or Peripheral Nervous System (like Postural Orthostatic Tachycardia Syndrome, peripheral neuropathy, weakness, radicular shooting pains, changes in mental health - all of which are present within my symptomology as well). National Jewish Health is working with my other doctors and closely monitoring this.
Secondary to chronic illness, there are multiple downstream effects that can and do occur. These further compromise a host's resiliency (your response and weakens immune strength). I have developed hormonal dysregulation (coined neuroendocrine dysfunction with adrenal insufficiency) and multiple vitamin/mineral deficiencies. More recently my pulmonary function tests were sub-optimal and echocardiogram (heart scan) showed valve regurgitation (mitral, tricuspid and pulmonic valves) with an "incidental" decrease in right ventricular systolic function (meaning overall heart function still looks good). I’ve developed progressing issues with peripheral circulation, an intermittent low white blood cell count (leukopenia and neutropenia), elevated liver values, visual disturbances, electrolyte abnormalities, painful bladder syndrome (interstitial cystitis) and protein in my urine (meaning my kidneys are letting protein leak through).
Now that we know what this is, we can start treating it! Turns out, that's not so easy! There are only a few experts in the nation who understand this specific disease process and associated complexity. If you are outside of the United States, this is even more difficult and sadly, there are many patients suffering in countries, even extremely developed ones, without any means of support. Luckily, prior to attaining a diagnosis, Dr. Daniel Kinderlehrer (an Internal Medicine MD in Boulder) put me in touch with a Bartonella Literate doctor (Dr. Julie Barter) who periodically travels to Colorado. For those out of her primary state of practice, we do rechecks via telemedicine, one annual in-person exam and she has local satellite clinics to help with more aggressive intervention, if needed. This helps to decrease the burden of travel on her chronically ill patients without compromising care. Honestly, this couldn’t have been more perfect. Around the time I received my test results, Covid 19 was in it's opening act. My initial plan was to fly to one of these larger facilities in California, Maryland or New York but I do NOT want to be traveling during CV19, especially with a compromised immune system. Thankfully, an appointment with her had been in the books for a while now!
My 1st appointment was March 16, 2020 at a practice in Denver. During our 3 hour consult, a treatment plan was developed. We went over an in-depth history, all diagnostics, pathophysiology of bartonella, the complexities of it's disease profile, how it relates to my abnormalities... she performed THE most objective physical exam, and discussed expectations, potential side effects and prognosis. It was exceptional (See published updates for outlines of her treatment changes).
What is the Treatment Plan??
There is no set standard of care or specific protocol for battling Bartonellosis. It is very individualized to the host factors, presence of co-infections, underlying conditions and severity of pathology present. We are doing a modified protocol combining Buhner and Dr. Mozayeni's recommendations for Neurobartonellosis (both herbal and synthetic antibiotic approach). This is rifamycin-based, and combines eastern and western medicine.
Antibiotic Initiation (Stage 1):
Phase 1: Bactrim (Some research has shown sulfa drugs do a good job at getting the endothelial phase of bartonella but also cross cover for co-infections like Lyme)
Phase 2: Clarithromycin
Phase 3: Rifampin (I can not start Rifampin until my adrenals are back online or my numbers are better with current replacement therapy, Rifampin will deplete the adrenals)
Once I have successfully added in all antibiotics (which can take over a year or two), if my body is tolerating it well, the hope is to continue this combination of ABX (Bactrim, Clarithromycin and Rifampin at full dose) for 30 days (Stage 2). Then after that, per Dr. Mozayeni's research, we abruptly change out my Rifampin for Rifabutin (Stage 3), and continue this combination until resolution of symptoms. Before I can attempt to stop antibiotics, I will need 3 successive negative blood cultures, PCR and ePCR tests through Galaxy Diagnostics, with at least 3 successive negative blood smears performed at Dr. Mozayeni's T-Lab (Stage 4). Another factor will be based on symptomology. My doctor has some alternative antimicrobial therapies we are discussing based of a recent publication discussing Bartonella's lag and stationary phases that we will likely integrate into treatment.
Antibiotics alone are not the answer. My treatment also consists of complimentary and alternative therapies to address all the sequala of chronic illness and Bartonella's disease profile. In addition to the combination antibiotics, I am on hormone replacement therapy, aggressive gut health, medications to help quell my Mast Cell Activation Syndrome, vitamin/mineral supplementation (for deficiencies and immune support), a multitude of antioxidants, joint support, and herbal therapy to mitigate chemical toxic effects of long term antibiotic (abx) use. A few of the herbals also have antimicrobial properties (like Japanese Knotweed and Banderol). It is quite comprehensive, also addressing nutrition (anti-inflammatory diet which is mainly gluten free, diary free, minimal sugar, organic, no processed foods, no alcohol) and aggressive organ support.
Phase 1 of treatment (Bactrim) was officially started on March 30th. The addition of the 2nd and 3rd antibiotic (Phase 2: Clarithromycin and Phase 3: Rifampin) will come over the next 3-24 months depending on how my body is tolerating the progression through our protocol.
Bloodwork will be checked every 4-12 weeks to monitor bone marrow, organ function (especially liver function tests, adrenal function and hormones while on rifampin), thyroid levels and certain deficiencies. Echocardiogram and Pulmonary Function Tests will be repeated every 6 months to 1 year pending trends. Imaging of my spine to monitor spinal degeneration and ultrasound of other organs will be done based on symptom progression. My recheck is coming up soon.
As mentioned above, the antibiotic protocol we are using is based off Dr. Robert Mozayeni’s research. He is an expert in the field of bartonella, an Internal Medicine Specialist (in Rheumatology and Small Vessel Inflammatory Disease) and a clinician. His combination of antibiotics seem to have the best results for Neurobartonellosis.
Once all 3 Phases are complete and I am finally on all combination antibiotics, treatment will then continue for 6 months-2 years with alterations accordingly. Presumably I should be at a “new normal” some time after that. Treatment does not stop there, as maintenance therapy and lifestyle changes seem to be required lifelong (Stage 5: Maintenance). There is a large population of cases that have required well-beyond 3 years on antibiotics for improvement or failed to improve all together. I am not sure what that looks like quite yet.
Relapse is also quite common. Just as hard as Bartonellosis is to diagnosis, it is equally hard to eradicate. The goal is remission of clinical symptomology (easing of my symptoms) with improvement in functional capacity (my ability to be independent). Once this disease is controlled or able to be kept in check, we can then address which of my joints will need surgery (if any). I’ll be on a regimented Physical Rehab Protocol as well, which is very similar to everything we have been doing (Stage 6: Rebuilding). I've been blessed to build a great team over the years who are standing by.
The long term prognosis and whether or not there is a chance at a cure remains questionable and is not well understood.
The toughest part is having lost so much despite best efforts. As I mentioned in the "Thank You" section of my blog, I have a lot to be grateful for but having to get to this level of dysfunction and injury...It was not for lack of trying...I do feel it was avoidable. My hope is this brings awareness to a disease profile that should be on everyone's radar, an alternative cause (differential diagnosis) for consideration in vague presentations with similar or auto-immune and inflammatory like symptoms, human or animal.
I am not sure if this post does the disease or the last 3 years of my life justice but hopefully it provides a snap shot into the extent of medical adversity faced. I am a fraction of the woman I use to be, easily overwhelmed and extremely fatigued. It has stripped away my lifestyle, career, hobbies, functional capabilities and compromised my reproductive health. While I look normal on the outside, that couldn't be further from the truth. My body and life could not feel more foreign to me.
Veterinary professionals are at a higher risk. The research is evolving every year. Please consider Bartonella testing if you are suffering from anything similar and have increased animal contact. Not trying to ignite panic, just keep the possibility in your mind. I have a feeling this form of Bartonella is considered “rare” because it is massively under-diagnosed, not because it isn’t happening. Traditional IFA (antibody) methods have a high false negative rate, a negative result does not rule out Bartonella. Galaxy Diagnostics is a great resource and specializes in advanced testing for intracellular pathogens. Even with their advancements, this disease is a tricky one to find due to its adaptative mechanisms and intra-cellular nature. This lab gives you the best shot and is where I would suggest testing for anyone suspicious of this disease.
Continue to 'My Journey' for treatment updates and an in-depth look at disease presentation
Continue to "Bartonellosis Education" for more details on Bartonella's capabilities