January 8th, 2023 – March 7th, 2024 | Part 1 – Part 5
Let’s remember back to ‘Update 6’, specifically there were statements (with strong conviction) to never allow THIS much time to pass between updates again. Well, it’s been exactly 14 months… to the day. FOURTEEN! I am quite literally feeling the pain – maybe you are too - maybe it took you 14 months just to read the last one, lol. I did try. Clearly, it was an unrealistic goal. Although, it’s not the first time and it won’t be the last – I am repeatedly humbled by just how demanding this disease (and it’s treatment) is on every aspect of your life. As most of you can understand, maintaining this blog is an arduous responsibility. It’s a welcomed investment for the betterment of others – one that is important and needed - but as I sit here day-after-day trying to produce an engaging and organized piece, it is somehow tougher than ever. You’d think with experience the material would be more refined and less overwhelming to organize, but I haven’t had this much difficulty writing an update since the inception of this blog. The more time that passes the more developments arise… If you can believe it, I’ve been trying to write this one since August 2023… So, here we are and here I am… remorsefully struggling to remember all that has happened. Let’s get to it!
Part 1
Driven, but Content. Determined, but Patient. Annoyed, but fully Accepting
208 weeks and counting
This process continues to be THE hardest I’ve ever worked toward a goal and somehow the most stagnant I’ve ever felt. For other patients and family members of patients, you know exactly what this means - High Demand for seemingly Low Reward and sometimes, costly consequence.
As my body approaches new milestones in treatment, I find myself reaching toward a life that is still yet to be defined and a future I’m yet to fully understand – it’s close enough to feel, but still too far to grab… and while I’m excited to enter new stages of treatment, I wish so much there was a way to speed this up.
At the start of this, I genuinely thought my willpower alone would have me in remission by now. I absolutely did not heed the doctors and researchers who warned otherwise. But, collectively, within the resolve of every minute…of every day… for the last three years, 342 days, 22 hours and 37 minutes; the effort and sacrifice are yielding greater returns.
And though I am fatiguing and the timeline to remission remains unclear, what is clear is that I’m steadfast in my faith and 208 weeks closer to that goal.
The Year in Review
In the context of this illness, 2023 was incredible. It brought much to celebrate and much to be displeased about. There was a plethora of treatment changes, stalled program advancements, more diagnostic imaging and a total of 6 recheck appointments with Dr Barter. I had 7 new specialist consultations, two additional IME’s (for work-comp), an interview with VIN (the Veterinary Information Network) on Bartonellosis and my final court hearing for Social Security Disability.
Over that time, I experienced resolution of multiple syndromes and symptoms…with vast improvement in others. Because of this, my doctor felt my body was resilient enough to FINALLY ditch the N95 mask. The timing was perfect - I truly don’t think I could have made it one more minute using those things. It was a temporary need, but one that was so intrusive. We complied to avoid any co-morbidities/illnesses that could delay my primary bartonella treatment, but it was tough on my friends and family… that added measure was extremely tough for me as well. Talk about true liberation…for all parties. Dr Barter does strongly feel I am now on too many medications to even pick up any circulating illnesses, but I am still proud to report there haven’t been any. Zero issue, even with my low IgG Levels, which is a significant testament and one of the things that’s made a dramatic difference in mom and I’s quality of life.
Conversely, I now have new soft tissue injuries to my feet and hands (landing me in splints, a wheelchair, and the grateful owner of a permanent handicap placard). There were weeks when just walking from the bedroom to the bathroom was impossible. It’s improving but persists today and has hindered every aspect of my life. I was prepped that this might happen on Rifabutin (since it penetrates the connective tissue so well and can better reach places with less blood flow) but wasn’t expecting it to be this bad. Losing the ability to walk Pancake, has been exceedingly difficult to accept. It’s not only my favorite thing to do, but it was one of my only outlets that remained - being actively present in nature with my best girl. I miss our pre-illness lifestyle and can’t wait for the day for us to trail run again.
I believe I’ll be able to get there, but hope it is still in Pancake’s lifetime. We used to have such epic adventures.
On a collectively distressing note, I started losing my hair, gained 10 pounds and my melasma significantly worsened (all thanks to the development of estrogen dominance). So, there’s that!
In recent months, however, I’ve experienced a slow and encouraging gradual shift. At first, I wasn’t quite sure what was happening, but can now confidently say the gains are consistently outweighing the losses. Even though every improvement is still followed by some sort of setback (per Bartonella’s usual), overall, it’s no longer the same intensity as the first few years of treatment - 2021 was better than 2020 - 2022 better than 2021 - 2023 was better than 2022, and I expect 2024 to follow that trend. I do find that as I improve my tolerance towards the process…more specifically these periodic setbacks, are diminishing. They are only a fraction of what they were, but when they happen, I’m flooded with a vivid unavoidable sequence of cautious panic and impeding dread that is simultaneously quelled by the comparison of how far I’ve come - it’s emotional turbulence. The contrast of ‘what is’, ‘what was’, the ‘what ifs’ and ‘what may become’ - I’m sure many of you understand this completely.
With that, I am hopeful this shift will spur some major interpersonal changes. For the better part of 5 years (since 2019), I’ve lived a fully immersed intrapersonal lifestyle. That is all I could manage with this disease. Granted, it was physically impossible to be anything else during the first few years of treatment, but the result was inadvertent isolation with a hesitation to connect. I do feel a change happening there as well and hope I can fully (and consistently) embrace it. I’ve been fortunate to have incredible friendships…friendships that continue to build (even in my absence) without motive or resentment. I’ve been absent long enough and need to start re-engaging.
Along those lines, my little brother and his wife (Brooke) flew in for the holidays - we celebrated his 40th birthday (which means I am almost 42). It doesn’t seem possible, but all three of us kids are now in our 40’s. During that time, mom and I also organized a surprise wedding reception for their 1 yr wedding anniversary (I helped but it was mom's vision). It turned out to be such a stunning and perfect evening.
He is the only one of us siblings who has found his person. As a sister, it is special to see. Personally, I’m not sure if I’ll ever find that, especially now. It feels inaccessible.
There have been a few phone calls with friends that did not leave me drained, a few that actually left me energized and a couple really fun, low-key outings.
Most importantly, my mom’s health has significantly improved – it took all of 2023 for her body to recover from what we believe was long-covid. It took a tremendous amount of time and impacted multiple organ systems (including her heart and brain), but I think the worst is behind her. It is great to see her with more energy and feeling well… especially as we welcomed in her 70’s! She’s my champion, that’s for sure.
There are so many more things (good and bad), but overall, 2023 brought remarkable blessings; and those blessings absolutely outweigh all else.
Where I am now
At the time of posting my last update, I was only a few weeks into the start of my Stage 3 drug, Rifabutin. Currently, I am still in Stage 3 and imagine I will be here until resolution of symptoms, but the general plan is to continue layering meds onto my antimicrobial foundation until that happens. What I want to highlight here though is the contrast in speed and my body’s overall response/tolerance between previous stages (Clarithromycin, Bactrim, Rifampin) and now (with Rifabutin and Methylene Blue).
Rifabutin
From the start of Rifabutin, it took roughly 6 months to get to our initial target dose (of 150 mg twice daily). While this medication is significantly more powerful than any other antimicrobial I’m on, it took exponentially less time to get to our target dose. It emphasizes the utility of staged antibiotic escalations -- the process of building a treatment program and it’s direct correlation in the step-wise decrease of one’s systemic bacterial burden. For comparison, it took me 22 months to achieve and sustain full doses of Rifampin. Despite Rifabutin being 20-50% more powerful than Rifampin with the ability to penetrate locations Rifampin can’t (like the brain, central nervous system and connective tissue), it only took a fraction of the time. This is a perfect example of just how compromised my system was and how much more resilient my body is now.
Like many of you, we started with mild antibiotics then worked up to (and layered in) the heavier hitters. The staged process allowed for my body to detox, rest and recover. It was/is an elegant and delicate balancing act performed under the direction of Dr Barter. Even though it’s fundamentally necessary, for us patients, it’s a painstakingly slow and abhorrently frustrating process. I can tell you, both as a doctor and as patient, there is no way my body could have managed treatment any other way.
Despite being able to reach our target dose faster, the herx was definitely NOT easier!
As expected, the herx reactions were severe, prolonged and diffuse. I never developed any high fevers or uveitis, but I struggled with worsening myalgias (muscle pain), arthralgias (joint pain), heat intolerance, increased sweating, increased neuropathic abnormalities and paresthesia (tingling, numbness, burning to my extremities).
There were flares of my MCAS (Mast Cell Activation Syndrome) and erratic fluctuations in my Autonomic Neuropathy (Dysautonomia) with symptoms including balance problems, difficulty swallowing, severe fatigue, nausea, brain fog, generalized weakness, migraines, episodes of low blood sugar, drastic swings in body and skin temperature, noise and light sensitivity, insomnia, myofascial adhesions and extensive soft tissue inflammation. It’s a lot, I know. And, it was brutal. But if you think about all the nervous system and immune system are in control of, it’s amazing the symptoms weren’t worse. (See Update 6 for an explanation of how Bartonella impacts the nervous system).
In what felt like record time, my body re-calibrated and these symptoms eased. While it was harsh (and in some areas, remains harsh – I’ll get to those later) for me, it’s been well worth it. Multiple symptoms are now completely resolved and multiple syndromes have improved significantly. So, despite the intrusiveness, knowing these flares are a result of bacterial death makes it worth it. Feeling terrible is no longer associated with the disease (even though the disease can make you feel terrible), instead it’s now more mentally associated with killing it. And, that empowerment is spectacular.
I do have a slightly orange appearance which surprisingly looks radiant with my olive skin tone. There is a group of us patients who always joke “Rifabutin looks good on you” when we see each other’s pictures on social. In low lighting, however, it inadvertently highlights my melasma (which does drive me nuts).
As for now, there have been no further program advancements with Rifabutin. Despite multiple attempts to move forward, we always hit a roadblock pivoting us in another direction. Eventually Dr Barter has plans to increase Rifabutin to 450 mg – 600 mg/day, but I’m not sure when that will happen. We discussed the option of layering in another antibiotic (like Clindamycin, Pyrazinamide, AlliMax Pro or Allicin) and floated the potential of transitioning from oral to IV meds (for a more powerful punch).
In the meantime, we shifted our focus to Methylene Blue (which was first added to my treatment program back in December 2020). Back then, we initially planned to work up to 100 mg twice daily, but the bacterial die-off was so profound I could not exceed taking one measly 50 mg capsule twice per week. My body just could not handle it in the earlier stages of treatment. As a result, I stayed at that dose for almost 3 years. To this point, any attempt at altering this remained unsuccessful. Now flash-forward to 2023… After Rifabutin was at target dose, we decided to try again. This time my experience was drastically different. Dr Barter adjusted our expectations and gave me a more attainable goal (of 50 mg twice daily) which to my surprise, was achieved in roughly 3 short months. For 3 years, I could only handle 50 mg twice weekly, and in 3 months I was handling 50 mg twice DAILY. It’s really insane to think about. This paralleled my experience with Rifabutin and again highlights the severity of compromise at the beginning of treatment and the procurement of resilience over time. Which is pretty damn cool.
Methylene Blue
If you are unfamiliar with Methylene Blue (MB), it has been around since the 1800’s and is one of the first synthetic drugs ever used in the history of medicine. Even though it’s most widely remembered for its use as a blue dye in the textile industry and laboratory setting, back then it was the only available treatment for malaria. Like most drugs overtime, Methylene blue has undergone repurposing (this is when an existing drug is found to have a new indication) and since been successfully used for the treatment of multiple conditions and many infectious diseases, like Bartonella. To date, it is actually one of the few available drugs capable of addressing treatment challenges specific to Bartonellosis.
It's Complicated
As noted throughout my updates, treatment of Bartonella requires a combination of herbal and/or synthetic antibiotics to target different life stages and locations Bartonella are known to infect. These variables also determine if that stage or location is more susceptible or more resistant to any one antibiotic. Now for the complicated part (hang with me because this is also where it gets interesting).
When you read through publications, you will see reference to “Growing Bartonella vs Persister Bartonella” which is in the context of inside the host or human (in vivo), or the “Log vs Stationary Phases” which is terminology often used in a laboratory when evaluating bacteria on a culture plate (in vitro). The ‘Growing Stage’ (aka log phase) is self-explanatory. In this stage, bartonella bacteria are growing – this makes them more susceptible to antibiotics. However, once Bartonella’s bacterial population has reached the ‘Stationary Phase’ (when the rate of growth equals the rate of death), their metabolic requirements deplete our body of available nutrients and create more harsh conditions. These harsher conditions increase Bartonella’s expression of virulence factors (products that contribute to bartonella’s survival, reproduction and ability to cause symptoms/disease in it’s host). Simultaneously, ‘Persisters’ develop which speak to a population of bacteria that are shielded from the immune system through biofilms or by living intracellularly (within cells).
For Bartonellosis patients, the Stationary Phase and Persister Cells (via 1. Intracellular locations and 2. Biofilms) pose the greatest challenge because antibiotics aren’t as effective.
In chronic infection, Bartonella are rarely freely circulating in the blood stream. As a primarily intracellular bacteria, Bartonella infect (and live within) 8 different cells in our body (endothelial cells, red blood cells, fibroblasts, monocytes, macrophages, microglial cells, dendritic cells, CD34 HPC cells). Here they are protected from our immune system and circulated to different locations within the body to A) seed new infection and B) create biofilms.
Biofilms are microcolonies (usually made up of various microbes) that stick to each other to produce a film. If you’ve ever felt a slimy feeling on a water bowl that had water sitting in it for too long or the gross layer on your teeth you remove with brushing, that’s a biofilm. They can form on any surface exposed to bacteria and some form of water. It is a protective mechanism highly resistant to antibiotics and in large, responsible for extreme persistence of many diseases like Bartonella and Lyme. That’s why we patients require fibrinolytics (aka ‘biofilm busters’ like lumbrokinase, nattokinase, etc) as part of our treatment. Unfortunately, as you break up these biofilms, it releases microbes (from said cluster back to their ‘free-living form’) where they can re-enter our circulation and travel to colonize new tissue (ie - producing new biofilms). When this occurs, the patient usually experiences profound illness because their body is overwhelmed by the material being released from these areas (like popping a balloon full of water or busting open a piñata). It’s a fairy sophisticated, somewhat vicious cycle that ensures the bacteria’s survival. Furthermore single antibiotics are not effective against biofilms, and in a recent study, only some combinations were mildly effective, however circling back to MB, the specific combination of Methylene Blue with Rifamycin eradicated the biofilms completely.
What’s the point here – In the most basic sense, traditional antibiotics most effective in the initial stages of infection are least effective in the chronic stages of Bartonellosis – we need antibiotics that can attack the ‘free-living form’, the intracellular form, the replicating form, penetrate the biofilms and prevent the seeding of new infection to other locations in the body -- Methylene Blue is one of the few drugs able to accomplish this, especially when used in combination with Rifamycins. Pretty cool, right?
And, despite how powerful it is, it is a rather safe drug. However, there are two scenarios where MB should be avoided - 1) If you are on medications that affect your Serotonin levels (not doing so can cause Serotonin Syndrome) and 2) If you have a G6PD Deficiency (which can cause the destruction of red blood cells and an acute anemia). Prior to starting MB in 2020, Dr Barter checked me for this deficiency and discontinued a few supplements that would have put me at risk for Serotonin Syndrome. It's also important to know that if you have cystitis symptoms, then it can cause an initial flare (and did for me) that will resolve as the bacterial burden lessens. It will stain surfaces (be prepared) and change the color (and smell) of your urine. It must be refrigerated and in full transparency, the side effects of long-term use are not well understood. The biggest downside however is the cost.
For years, Hopkington Drug (in Boston) was the go-to trusted pharmacy for compounded Methylene Blue amongst patients and doctors until 2023, when they were bought out by PD Labs (in Texas). Unfortunately, after the acquisition, PD labs doubled the price of a 30-day supply (ie $300 to roughly $700). Who can afford that, especially when you add in the cost of all our other treatments?? When I spoke with a PD lab rep about this, their response was “That’s what happens when you have a monopoly on a product”. His nonchalant attitude made it all the more infuriating. I did file an official complaint with the company. They addressed my concerns and apologized for the unusual interaction but did confirm the price increase. Luckily, Infuserve America (in Florida) offers high-quality acid-resistant Methylene Blue capsules at half the cost. Their formulation, carrier oil and customer service are much like Hopkinton. If you are shopping for an alternative to PD labs, you might want to check them out.
I think MB’s treatment utility is something to consider if you haven’t already. Clinically, doctors have seen a positive quantifiable response - Some patients do feel an initial worsening (which is herx-related) but overall, report notable improvements in some of their symptoms. For me, the combination of Rifabutin and Methylene Blue has definitely moved the needle.
As a side note (this is for you Grandma) - Since the start of my treatment, my grandma, now 96 years old, researched bartonella’s mechanisms of action and immediately understood the benefits of Methylene Blue. She had a flourishing medical career that spanned decades in duration and still has one of the most brilliant medical minds I know. She advocated time and time again for this medication to be made a priority. I have pages of her notes and research on the matter, which are incredibly special. So, Gram – I know you are delighted to know this is happening!
Symptoms
Over the years, I have experienced every symptom you can imagine. As with my case (and in most cases of Bartonellosis), this includes a combination of musculoskeletal, neuro, circulatory, psychiatric and sensory conditions that lead to a decrease in physical and mental function. It’s the combination of impairments THAT hinder our ability to perform some of the most basic daily tasks. This has been true for me and remains true. However, as the weight of my symptoms have started to ease, many things that were impossible to engage in (or perform) are now back to being part of my daily routine. That lessening has paved the way for me to start regaining aspects of my personality; the parts of my life that bring me such joy… the simplest parts of life that you don’t ever think about until they are impossible to do, like holding a utensil or having energy to laugh - This might seem insignificant to people who are healthy, but it’s not..
For years, the most basic daily task was impossible and the ones that required focus or to be actively present were unbearable. The simplest conversation – 1 to 2 sentence exchanges - left me without, doctors appointments required a 2-week recovery period to rebound, sometimes just taking a breath was exhaustive… a process no one ever thinks about, but one that was enough to expend all energy. It’s a type of reality that is really hard to capture with words. Honestly, I prefer not even try. But, as I look over past symptom charts from different periods throughout this process, they hit a little differently. Initially they felt insurmountable, but now serve as a tangible measure of what’s possible. Little by little, certain symptoms are no longer noticeable, others are tolerable… while some are gone. There is a handful that remain disabling and others that fluctuate in severity, but in comparison, my symptom profile is 70 percent better. Mostly, I feel different…I feel more like me.
With less opposition, it’s opened a door to a sense of independence (and purpose) and means to connect. I’ve regained my ability to consistently engage with my mom, to take my dog on car rides with the windows down and radio up… to sing to my favorite songs, to collectively feel less pain (and more joy) and to be able to hold a plate AND a utensil to eat. For the longest time, it was one or the other. I could hold the utensil or the plate, but couldn’t do both. I’m also able to do some light cleaning now - never thought I’d be so happy to dust. I pretty much Swiffer everything. The most healing part is feeling the freedom of being completely present with my mom and having phone calls with family and friends
So, in light of this, I made another list, lol, to illustrate symptoms that have resolved so far AND things I am now able to do (that weren’t possible in earlier stages of treatment). I intentionally excluded listing my current symptoms because this part is meant to focus on the good (I’ll get to the bad later). I also want to add a disclaimer here for other patients so they do not feel discouraged – this is NOT a list of things I can do in one day, rather a list of things I can do again IN GENERAL. How I decide the when and where to invest my energy remains a calculated process solely based on how the activity may flare my existing symptoms and how said activity may garnish my energy reserve for the remainder of the day.
Much of these things may seem simple, especially if you were less sick than me when you started treatment. But given how ill I was, it’s pretty miraculous
What’s worse?
Hand and Foot Pain
At the start of my illness, I only had pain in the soles of my feet (classic bartonella presentation) while my hands remained normal. As the disease progressed, it started to impact my hands in new ways, but the pain in the soles of my feet remained rather unchanged. That was until September 2023 when I started experiencing some discomfort along the sides of my feet. It was subtle… enough to notice, but not enough to really mention. By mid-October, this abruptly worsened - I developed bilaterally symmetrical, uncontrollable swelling on both feet at the plantar plate (localized to the the ball of my foot). The swelling and pain were so severe, some days I couldn’t even walk from the bedroom to the bathroom. For months I had to stand on foam blocks to shower, could not leave the 2nd story of my house or perform any other function requiring feet. Imagine not being able to put any weight on either of your feet. It was like stepping on sharp pebbles, broken glass or if you are a parent, a million Legos! I literally crawled from room to room. The most mentally distressing part was losing the ability to walk Pancake. I hate that she must live my life, full of limitation, rather than adventure.
As the situation worsened, I was issued a permanent handicap placard and required a wheelchair (and still do if we go into a store). My feet were so swollen, I had to purchase shoes a full size up. Dr Barter strongly felt this was secondary to Rifabutin’s extensive ability to penetrate the soft tissue, especially in areas of frequent microtrauma and decreased blood flow like my peripheral limbs. She even warned me that this type of herx could happen and if it did, could take 8-10 months before any improvement. That’s a ridiculously long time to wait for “some improvement”, on top of everything else!
By December 2023, I had seen 3 different podiatrists to make sure I was doing everything possible to heal. One used an ultrasound to try to drain some fluid from the swollen areas.
This went poorly and of course, made my feet worse. Getting needles stuck into your feet is actual torture. I was so hopeful it was going to help – if he could even remove just a small amount to take the pressure off…..but, the whole process ended up creating even more swelling instead of relieving it. Multiple MRI’s showed nonspecific inflammatory changes - connective tissue injuries and swelling over the head of metatarsal 1 and 5 on the ball of my foot (Plantar Plate) which further solidified Dr Barter’s assessment.
Thankfully, a local doctor instructed me on a regenerative modality called Peizowave Shockwave Therapy. It’s something heavily used in the rehabilitative landscape of veterinary medicine. Pancake had a series of treatments a few years ago for her back injury, but it is extremely hard to find for humans. Luckily, there are two locations in all of northern Colorado that offer this specific device. We have been doing this every 2 weeks since November. It’s an interesting technology and selectively targets areas of inflammation/injury. You can’t feel the acoustic shockwave anywhere that’s normal. It is an extremely focused treatment and one of the few things that provides immediate relief. Dr Barter also started the NSAID Celebrex which had a great impact on my other rheumatic symptoms. I’m sure it’s doing something good for my feet, but it was no silver bullet. You might be wondering why we didn’t do this earlier, but there was a hesitation to use one because of my kidney inflammation (and protein loss). Thankfully, my kidneys are tolerating the NSAID without issue. Topically, we combined Potassium Iodine drops (blood flow) and frankincense (pain and inflammation) with DMSO (carrier to drive both products into the deeper tissues) and alternated between this, an Arnica CBD cream, epson salt soaks and frequent icing. None of which made remarkable differences until February 2024 when I had something miraculous happen.
Mom and I went to church to see Rabbi Jonathon Cahn speak. He is a critically acclaimed author, religious scholar and Messianic Jew. It was brutal getting from the parking lot to the main auditorium and by the time the event was over I could barely walk. Mom helped me to the lobby while she went in search of where he was located for his post-presentation ‘meet and greet’. The table was a bit out of sight and in a less populated area so by the time my mom found it, there were only 3 people in line. When I introduced myself to him, he looked up at me and said “Nicole, the victorious”. After we met, mom asked if he would pray over me before we go, which he so kindly did. It was one of the most beautiful and powerful prayers I have ever experienced. He spoke both in English then in Hebrew. It was really special. I hobbled back to the car and went to bed in excruciating pain that night. The next morning however, I woke up with 90% of my feet pain gone. I couldn’t believe it. I was laying in bed and my feet just felt better. It took me a while to get the courage to get out of bed because I wanted it to be real. Well, it was. It was a miracle. The power of prayer. This was Feb 16th, 2024. To date, they still are not completely back to normal but in the weeks since that prayer, the improvement maintains. I’m hopeful in the next few months this specific issue will be resolved completely.
As for my hands, I’ve developed carpal tunnel syndrome, cubital tunnel syndrome, thoracic outlet syndrome… basically all the syndromes you can think of from fascial tightening and adhesions. It’s led to worsening paresthesia (tingling, burning, pain), arm numbness, neuropathic pain, trigger fingers and excruciating hand pain. There are occasional shock-like sensations that radiate into my palm and fingers, and pain that travels up my forearm. It’s always worse at night because the majority of people sleep with their wrists or elbows bent, which further impinges the nerves in those regions. During the day however, it only occurs positionally (ie if I am holding the phone, holding a pen, trying to read a book or driving). The same goes for my joint pain and stiffness. The more I move my fingers, the easier it becomes to move them. It’s as if my fascial is sticky (because it is), then with motion becomes lubricated.
In December, I started Myofascial Therapy which appears to be helping, but is hard to isolate the “how and where”. The MFT recommended continuing 1-hour sessions every 2 weeks, followed by lymphatic massage. She describes my fascia as an “adhered straitjacket” and “some of the worst fascial adhesions across all facial planes” that she’s ever seen. Sessions release a large amount of heat/inflammation (as it’s suppose to) but I literally feel like a furnace afterwards. Even though I’ve only had a handful of sessions so far, I think it’s doing something. It’s just going to take time to truly make a dent. At my last recheck, Dr Barter reiterated that “It will improve the release of toxins from deeper fascial layers and enhance blood supply to the area (providing detox/nutrients and increased antimicrobial influence). In large, fascia is thought of as a mechanical component, but there is a hydrostatic charge within the fascia that can affect the motion and ‘lubrication’. You have to physically release this stuff or it will continue to be bound up. Under normal circumstances, a person is much more active which naturally keeps the fascial layers moving decreasing the chance of adhesion – that is not an option, especially now with your metatarsalgia and feet swelling”
As a whole, the dysfunction to my hands and feet and the nerve impingements to my arms and lower legs have really been one of the most significant limitations, especially in the last 6 months.
Perspective
Through this blog, I’ve had the unique privilege of talking with multiple people silently suffering with this disease…whether it’s at the beginning of treatment, years into it or those currently drowning in misdiagnosis, the implications are far and wide. There are some who achieved remission in 2 years using a program like mine, while others showed no improvement until year 4 (or even 6) on continuous therapy. There are those who feel worse than ever after starting therapy (this is normal, did happen to me and why specialists in the field refer to treatment as ‘antimicrobial chemotherapy’)… and others who felt improvements within just a few months - the majority, however, parallel my exact journey. It’s interesting because our bodies and disease factors are different but more times than not, our timelines and progress intersect. I know for some, it never does, or at least it seems like it never will. I emphasize this because it’s something we all struggle with in different ways with each new stage of treatment. Why can someone feel better in 6 months while others can take years?? But that’s Vector and Tick-borne disease in general. There can be such a tremendous amount of angst and uncertainty, especially with the open-ended timeline, variations in each doctor’s approach, host-specific factors and the deficit of knowledge (and thereby the lack of support) within our community. Just remember, stay consistent and keep building. It may not be perfect BUT it does get better.
Part 2
Navigating the Law
After my diagnosis, I knew I was looking at years of continued treatment and prayed for God to help me find the avenues to fight and identify ways to beneficially apply the reality of my circumstance for forward progress -- to put the right people in my life to help me fight those battles, navigate the law and explain the available options. With that, there have been many blessings, time after time, as a result of this ridiculous and terrible situation. A beautiful orchestration of God’s work….through the heartache, the fight, the emotional adversity… and at times, the feeling of wasted effort. God has made so many things come together to forward feed my healing and eventual restoration. One day I will share the details and timeline of each of these miracles, but for now I just want to give the Glory to the Lord for continuing to guide me through the darkest time of my life.
Social Security Disability Insurance – Fully Approved
After 3 long years of fighting and advocating through the stress and exhaustion of our federal disability system, my unrelenting battle for SSDI Benefits finally paid off. Back in 2022, I entered the hearing phase which is the last part of the appeals process. After waiting multiple months, in May 2023, the big day had finally arrived. There was a judge, a federally appointed vocational expert, my attorney and me; all done virtually. Whatever the judge decided in those 30 minutes would be the final say. There would be no new avenues to fight for benefits. As the judge went through the documents trying to make sense of my complex picture, I truly felt there was no way she could understand. No one else in the federal SSDI system had. The initial exchanges were cold and dismissive and my attorney couldn’t even pronounce my disease. Luckily, he did provide an incredibly thorough legal document citing all my reported symptoms and conditions noted in 1000’s of pages of doctor records and visit summaries. As we progressed through the process her questions to the vocational expert (and his responses) became more promising. After the hearing concluded, I walked away feeling uncertain. All that was left to do was wait for her report and decision.
About 6 (very long) weeks later we received the formal documents, dated June 28, 2023, titled “Fully Favorable” decision!!! I couldn’t believe it. I read the information thinking I misunderstood until my attorney’s office reached out and confirmed the incredible news. I was elated that the effort wasn’t all for nothing, that my conditions were validated and that the court acknowledged Bartonellosis. I was finally approved for SSDI benefits!!!!
One of the best parts was when the Judge discredited those terrible SSDI doctors who were responsible for the PTSD of all prior denials. So often during this process I was penalized for making any positive progress with treatment - They fully exploited, manipulated and inflated any momentum for use against you. Every time I experienced something positive and was excited to share that with Dr B, this happened. It even got to the point where my excitement to experience something good started to feel bad. Luckily, my doc had the foresight to document the aftermath “I was able to do XYZ for the first time, BUT”. Which was quite hard for me to articulate because I’m wired to focus on the good. I’m glad she pushed to discuss those points and I’m very grateful to the judge who understood that even with my improvements, the combinations of impairments remained enough to approve SSDI benefits.
The judge also acknowledged February 2019 as my “Onset of Disability” date (that was the last date I was able to engage in any gainful work of any level) which opened the door for greater assistance and more opportunity. It’s been 5 years since I’ve been able to practice medicine….which I still can’t wrap my head around. But I am so grateful for this outcome!
I know for some reading this you’re wishing this could have been you…and by all accounts it should be. I wish this were the outcome for all who need it, but the reality is less just. The process itself is flawed. The people who need it the most are often denied (despite best efforts) and based on my experience, can absolutely understand why a sizable percentage of sick or injured people withdrawal all together. I’ll never be able to adequately explain how distasteful, discouraging, dismissive, traumatic and disorderly the entire process was. It was grueling and at times, wondered if it was even worth continuing. I am very grateful the effort wasn’t all for none. It took a few months, but I am now receiving monthly benefits and have transitioned to Medicare which does help with a substantial portion of treatment costs. After leveraging credit cards, life savings, multiple personal loans and undergoing bankruptcy… to utilizing the food bank and receiving aid from GoFundMe donations, LymeTap, Catholic Charities, my church, family and friends… my head’s finally above water. I am dreading the re-evaluation period already but that’s at least a few years away thankfully.
Worker’s Compensation
“In all workers’ compensation systems, covered workers are entitled to medical care for their covered injuries or illnesses, and disability benefits to partially replace lost wages that occur as a result of a work-related injury”. DOL.gov
I feel fortunate that my cat bite was a work-related injury because it offered means to pursue possible assistance within the work comp system. Unfortunately, what should be a seamless process is quite difficult for more complicated illnesses like mine. Even during the acute period, work comp insurance refused to pay for some of my hospitalization fees, medical care and the initial specialist appointments that happened thereafter. It took months to get them to cover outstanding bills. Never once did they assign me a Claims Agent or cover any of my missed work. Once I was out of the acute period, the process became even more difficult.
Despite never fully recovering after the cat bite, they refused any and all work-ups, even after proving it directly resulted in disseminated Bartonellosis. Luckily, I found an incredible attorney willing to represent me. For years, we have been battling within the system. SSDI was in a class of it's own... a severely flawed, traumatic and distasteful process, BUT if I were to compare between the two, navigating the work-comp system is exponentially more challenging (and frustrating). It’s been one thing after another followed by uncertainty and a lot of waiting. Keep in mind this battle has been going on at the same time as SSDI. I often questioned if doing so was worth the effort - especially the collateral impact it has had on my health, but wasn’t going to accept my current circumstance without at least trying. I'm just not built that way. While stressful, I have complete and total trust in my attorney. She is committed to my case and very much wants to bring “great people a great outcome in an unfortunate situation”. It’s one of the things she loves about her job. We are nearing the end, although after 7 years of fighting for worker’s compensation, it feels like it may never happen. It’s my only means of pursuing any type of restitution for the loss. Whatever the decision, I know I am doing everything possible to advocate for myself. I am praying God grants me a win here too, though cautiously optimistic
Dr Daniel Kinderlehrer
One of the good things to come from embarking on this WC battle was my ability to finally meet Dr Daniel Kinderlehrer. In 2023, he kindly agreed to be our expert witness. For those who do not know the name, he is an MD, Internal Medicine specialist and one of the nation’s foremost experts in the Clinical Management of Lyme disease, Bartonellosis and other tick-borne illness. In recent years, Dr K published the most comprehensive and integrative medicine guide for the diagnosis and treatment of diseases like Bartonella. Personally, he has been integral in my health and treatment trajectory dating back to our first conversation in 2019. He is the reason I found Dr Barter, has helped educate other physicians to understand my illness and advocated for me in multiple situations throughout the years. I read every word of his 400 page book, it was an honor to shake his hand and thank him for his advocacy and expertise (AND for signing my book).
To my attorney and Dr K - Thank you for all you do and have done!
Part 3
Syndromes | New, Improved and Resolved
Toward the end of Update 6, I mentioned there were multiple syndromes that have since resolved or greatly improved that I was going to postpone discussing until update 7. I realize now, repositioning that content was a mistake. It’s made this one pretty challenging to succinctly summarize. To save on length here, I mainly want to go into more detail on the resolution of my acquired joint hypermobility syndrome and the changes in my neuroendocrine function; there are 2 additional pull-down menus discussing my Proteinuria/Kidney Inflammation and Diabetes Insipidus for those who are interested as it relates to Bartonella and mycotoxins; Hypogammaglobulinemia will be saved for update 8
Acquired Joint Hypermobility: RESOLVED
Onset | Late May 2018 (about 16 months after the cat bite, first noted in my elbows) |
Resolved | December 2022 (about 2.5 years into Bartonella treatment) |
Bartonella | Targets collagen, leading to disruption of our connective tissue. |
MCAS | Mast Cell Activation, histamine release and chronic inflammation |
My Case: A few months after the cat bite, I started to develop what seemed like incidental soft-tissue injuries while exercising. Little by little, the issues compounded and a series of escalations ensued. I developed a robust rheumatic profile including migratory joint pain, long bone pain, constitutional changes, disproportionate inflammatory conditions, muscle aches (myalgias) and a slew of other symptoms. As my disease and soft tissue derangements progressed, I started to slowly develop joint hypermobility. This was first noted in my elbows about 16 months after the cat bite then progressed to my hands, wrists, fingers and spine. At my worst, my Beighton Score (a measurement of hypermobility) was 7/9 (my knees were the only joints unaffected). After multiple work-ups, I was diagnosed with an Undifferentiated Connective Tissue Disorder (UCTD) and Acquired Joint-Hypermobility Syndrome that mimicked EDS Type III. None of the rheumatologists believed I had EDS, but all agreed it looked identical. A few floated the idea that it was just ‘secondary to my UCTD and unrelated to Bartonellosis’ while some specialists felt it was a result of something that was mimicking it given the presentation and progression. Once I was able to confirm my diagnosis of Bartonellosis and start treatment (in March 2020), the hypermobility started to improve. It wasn’t immediate, but over time, my Beighton score slowly decreased and by December 2022 (33 months after starting antibiotic therapy), my hypermobility had completely resolved!
Discussion: There is currently only one published case report (authored by Mozayeni and Breitschwerdt in 2018) discussing this exact scenario in the Journal of Medicine. The DVM in that report had predominant rheumatic symptoms and experienced progressive joint laxity that resulted in the diagnosis of hEDS at two major medical centers. She was confirmed positive for chronic Bartonellosis and diagnosed with Mast Cell Activation Syndrome. With treatment of the underlying infection, her hypermobility ultimately resolved – indicating that “a long-standing Bartonella spp infection, accompanied by MCAS can contribute to ongoing damage to connective tissues; resulting in clinical findings that mimic EDS and resolve with appropriate antibiotic treatment”. As with her case and mine, I’ve met multiple people who have trended the exact same way.
I am not going to go into great detail on Ehlers-Danlos Syndrome here, but in short, EDS type III (also known as hypermobility EDS or hEDS), is an inherited, congenital disease that causes profound laxity, and extremely mobile joints or hypermobility. It is part of a greater spectrum of inherited disorders that primarily affect your connective tissue (skin, joints and blood vessels). Typically, patients present with fragile or stretchy skin, loose joints and a family history of subluxations (or being double jointed). Of the different EDS presentations, hEDS is the MOST common form and the ONLY form that cannot be genetically tested for. Diagnosis is based solely on clinical presentation and history (a diagnosis of inclusion and exclusion). It requires the patient to meet all 3 diagnostics Criterion outlined by the EDS Society, starting with your Beighton Score (a system that measures joint hypermobility on a 9 point scale - thumbs, elbows, knees, spine, pinky fingers). In my situation, the highest my score ever got was 7/9 and I was never able to meet Criterion 2 or 3.
Proposed Mechanisms
There are two proposed mechanisms here 1) Bartonella’s pathophysiology and predilection for collagen and 2) Mast Cell Activation Syndrome and chronic inflammation (which most patients with Bartonellosis develop).
Bartonella, Collagen and the release of Cytokines
Our connective tissue is one of the vastest networks supporting our body and unfortunately one of the primary areas Bartonella thrives. There it targets collagen and our connective tissue’s ground substance, the Extra-Cellular Matrix (or ECM) to ensure it’s access to nutrients and continued protection from our immune system. It does this in a few ways:
As a gram-negative bacteria, Bartonella express outer membrane proteins called adhesins (specifically Pap31, BadA, TAA) that allow Bartonella to adhere or bind to our collagen and other products found in our connective tissue (specifically the fibronectin, laminin and integrins). Once attached, Bartonella can avoid clearance by our immune system and create a chronic low grade inflammatory state – specifically targeting Collagen type 9 and 10 (possibly type 4), the vitronectin (a protein needed for tissue remodeling) and our hyaluronic acid (which is necessary to lubricate joints and for brain health).
Research has also shown that Bartonella can exploit our immune system by using our natural defenses to feedforward it’s survival. For example, once we become infected with Bartonella, the bacteria are able to gain access to our cells (establish infection intracellularly), manipulate our cellular function for it’s own benefit and release different biomarkers that promote it’s growth. Specific to hypermobility, Bartonella is able stimulate the release of Interleukin 8 (one of our body’s inflammatory cytokines) which leads to the upregulation of two proteins (MMP-2 and MMP-9) which breakdown our connective tissue. As the chronic cycle continues and the connective tissue symptoms progress it leads to the eventual development of acquired hypermobility (similar to the presentation of EDS III). It’s an elegant process and one of Bartonella’s many impressive evolutionary advancements.
MCAS:
Mast Cells are one of our immune system’s primary defenses. They have an arsenal of chemicals that are meant to protect us by inducing targeted inflammation Unfortunately, with MCAS, the mast cells become dysfunctional and create a chronic pro-inflammatory state. Because most of us patients with Bartonellosis have concurrent MCAS, research has proposed the added chronic inflammation can cause alterations in collagen formation that does play a role in a subset of nongenetically mediated hypermobility EDS.
As a side note, The NIH (National Institute of Health) does have chronic bacterial infections listed as a cause/differential for acquired connective tissue disorders so it makes complete sense that with treatment of the underlying condition (ie- Bartonella), that these disorders may be reversible. It was for me!
The Surprising Downside
Since my hypermobility has resolved, my connective tissue has taken a radical swing in the opposite direction (which I eluded too in the symptom section). I’ve developed multiple myofascial adhesions, stiffness, tunnel syndromes and soft tissue injuries in my extremities. Everything is tight. I must stretch multiple times a day, use heat on my jaw/arms/back/legs, foam roll, use the TheraDrill (vibracusser to loosen up areas I can’t stretch) and the tens unit for any rebound spasms from over stretching. I purchased a couple new tools to add to my arsenal (like the fascia-blaster and revomedic) but am being very conservative there until I know how my body will consistently respond. Seeing the Myofascial Therapist has been one of the most successful tools. Between her sessions and lymphatic massage (I alternate one each week), we are making progress on my arm numbness (from tunnel syndromes) and multiple trigger fingers. So the resolution created newer issues, but is all part of the recovery process. On the plus side, my skin is tighter (especially on my face and certain parts of my neck), joints and spinal alignment are more stable, my ribs are no longer luxating and there’s been no further subluxations of any joint. My body really shored-up, I went from needing the chiropractor once/week…for the last 5 years, to only seeing him twice in the last 6 months.
Neuroendocrine Dysregulation: Resolved/Improved
Onset | 2017 (Started experiencing mild irregularities 5 months after the cat bite) |
Progression | 2019 (Complete HPA axis dysfunction, multiple hormone abnormalities) |
Treatment Started | 2020 (Dr Barter started treatment; Up to this point no Doctor in conventional medicine would implement treatment for these irregularities, including my endocrinologist) |
Resolved | 2023 (No longer requiring full spectrum supplementation - only requiring thyroid medications to manage my hypothyroidism) |
Bartonella | Secondary to chronic inflammation and a chronic adaptive stress response leading to adrenal fatigue and HPA Axis dysfunction. |
My Case: Prior to diagnosis and for years after starting treatment, I experienced severe neuroendocrine dysregulation (as most bartonella bacteremic patients do). In some instances, certain hormone levels were too low to even be measured; they were literally undetectable. My body couldn’t produce even the smallest amount, let alone the necessary amount for proper function. Like all things with this disease, it boils down to inflammation and chronic stress. Over time, the complex stress response leads to dysfunction of the endocrine, nervous and immune system. This eventually leads to low cortisol levels and a hormonal and neurotransmitter imbalance, all of which perpetuate the cycle of chronic illness and further weaken the body. Managing this is one of the most important parts of treatment. Without it, your body cannot function appropriately, and it will never be able to achieve homeostasis.
In the few weeks before starting antibiotics, Dr Barter made sure I was on all necessary hormone therapies so my body would have a better chance at adjusting to treatment. I required adrenal support (hydrocortisone), progesterone, testosterone, DHEA (which is needed to produce estrogen and testosterone), T4 and T3, and herbal therapies to support my organ systems and detox pathways. Each year, the amounts my body needed decreased as my HPA axis (the axis in charge of telling which organs to produce which hormones) came back online. Eventually, my adrenals started producing a normal cortisol response, no longer requiring hydrocortisone. My ADH (anti-diuretic hormone) production normalized, my thyroid profile stabilized, and I was no longer positive for hashimoto’s (a very common thyroid autoimmune disease). My thyroid antibody levels (TPO) were negative for the first time in YEARS! This progression is to be expected throughout the course of our disease and treatment; as the bacterial burden and inflammation decreases, your body is less depleted and more self-regulating. For example, at the start of treatment I needed 12 mg of testosterone daily and by 2023, my body was only requiring 1.5 mg every other day; same for DHEA – I needed 25 mg at the start of treatment and by 2023, only required 5 mg EOD to maintain appropriate levels. Despite being proactive here and frequently trending bloodwork (every 4-8 weeks), my endocrine function was rapidly changing (in a good way), but by the end of 2023, there was an alarming jump in my estrogen levels. So much so, Dr Barter put it this way:
“Your estrogens are about the highest I’ve ever seen. Before going down the whole workup with transvaginal ultrasound and abdominal CT to evaluate for neuroendocrine tumor - let’s do the obvious: STOP the testosterone and DHEA altogether, effective immediately. We will repeat labs 1 week before our Jan 2024 appointment -- Highly suspect that the testosterone is being aromatized into estrogens. Will also test A1C, Insulin levels and Iodine”
So - how did we get here? We first noted a low level spike in my estrogen levels about 1 month after transitioning to Rifabutin. This wasn't all that surprising because we know Rifabutin doesn't drain off (ie- metabolize) certain hormones like Rifampin does. At that time, Dr Barter added CDG-EstroDIM and altered my remaining hormone therapy accordingly (which had immediate, but temporary effects). We suspected I was experiencing higher (more concerning) intermittent spikes based on my hyperpigmentation (melasma), but we were never able to prove it until now. I did pursue an emergent transvaginal ultrasound - Thankfully, this showed no evidence of PCOS or tumors. There were three benign uterine fibromas, but no obvious findings to explain my estrogen dominance. So, all that was left to do was wait and see if they normalized once testosterone and DHEA were discontinued. Pending those results, the next step was an abdominal CT to rule out cancer.
Luckily, just a few weeks later (Jan 26, 2024), my repeat hormones were improved. My Estrogen levels (E1 and E2) were on the higher end of normal and trending well with discontinuation of the testosterone and DHEA. My Sex-Hormone Binding Globulin Level (SHBG, a hormone that helps balance testosterone and estrogen levels) was still elevated. Typically, when estrogen levels increase, it is accompanied by an increase of SHBG so this was expected. What was a surprise though was my deficiency in iodine, which is important in the metabolism of estrogen (among many other processes).
Dr Barter’s Impression: Estrogen Dominance secondary to Testosterone Aromatization and DHEA
Testosterone Aromatization is a chemical reaction that converts testosterone and it’s by-products into estrogen (specifically E1 and E2). This is a normal chemical reaction for men and women (yes both men and women have testosterone and estrogen, just in significantly different concentrations), BUT in certain situations (like Hormone Replacement Therapy or reproductive cancers), the body cannot adjust to the imbalance. As a result, my body started converting testosterone into estrogen resulting in my melasma, weight gain, hair loss, mastalgia and a multitude of other symptoms. Aromatization is most likely the culprit since Estradiol (E2) and Estrone (E1) improved with the discontinuation of testosterone and DHEA.
To address the Iodine Deficiency, I was started on Iodoral 12.5 mg daily. In the female body, insufficient iodine levels can affect us hormonally through the brain, thyroid and reproductive organs. It is an essential trace element necessary for multiple body functions through all life stages. Low levels can lead to estrogen dominance, specifically high levels of estrone and estradiol (together typically referred to as “dirty estrogens”). This raises our risk of estrogen-induced breast, uterine and ovarian cancers. Iodine helps to maintain the estrogen balance in favor of Estriol (E3, also referred to as “good estrogen”) which is the estrogen shown to protect against estrogenic cancers and help with estrogen-related weight changes. Correcting the iodine deficiency will improve the estrogen levels further
Even though my estrogens are trending in the right direction, they were still high normal. The plan is to monitor this frequently to be sure there is no indication for an abdominal CT or use of an aromatase inhibitor (medication that inhibits the conversion of naturally produced testosterone to estrogen). For those who are curious, I’ve been on and am continuing on CDG EstroDIM (2C twice daily) as part of my hormone therapy profile which helps to maintain healthy estrogen levels as well (at least it’s supposed to, lol).
I am still yet to lose the 10 pounds of hormone weight I gained during that time, my hair loss is a bit better and my melasma… I’m not sure that will ever go away, but as long as I am not at risk for cancer, I can manage!
Proteinuria/Protein-Losing Nephropathy: IMPROVED
Diagnosed | January 2022 |
Improved | February 2023 |
Resolved | TBD, next recheck February 2025 |
Bartonella | Causes vasculitis (inflammation of vascular tissue), granulomas (inflammatory lesions) and autoimmune processes which can damage the kidneys |
Click for Discussion
Diabetes Insipidus: RESOLVED
Onset | Symptoms started in the Fall of 2021 |
Diagnosed | February 2022 |
Resolved | February 2023 |
Bartonella | Pro-inflammatory cytokines (chronic inflammation) and chronic oxidative stress from infection overwhelm bi-directional communication pathways (between the nervous system and endocrine system) resulting in incremental suppression of the HPA Axis |
Mycotoxins | Patients with evidence of mycotoxins often experience endocrine disruption which cause the pituitary gland and hypothalamus to dysfunction. The most common mold associated-pituitary abnormality is low ADH production which leads to secondary diabetes insipidus. |
*These mechanisms are the same for the previously discussed neuroendocrine dysregulation section
Click for Discussion
Part 4
Mycotoxin Update
For those new to the blog, in 2022 we learned I had past exposure to a severely water-damaged building (during undergrad) when FSU officially publicized the indefinite closure and environmental review of it’s College of Health and Human Sciences (also known as the Sandels Building). After sharing this with Dr Barter, I immediately underwent mycotoxin testing and as most of you know, my initial results were an exact match to the environmental report of this building. I can still feel my disbelief and shock just by typing it now. This was a horrifying and rude awakening, but also promising to identify. Not only did it make me more predisposed to developing chronic illness, but untreated, there would be no way to achieve symptomatic remission in my Bartonella treatment. You can find a more in-depth reference (clinical impact, treatment and importance) in Part 3 of Update 6, but long story short, this was a huge revelation then and continues to be a large part of the problem now.
At the time (March 2022), Dr Barter changed my systemic antifungals, added more binders, and increased my detox measures (which included weekly glutathione infusions, lymphatic massage and increased FAR IR Sauna use). I have been consistent with all therapies except one, the Povidone Iodine/Budesonide sinus rinse. It is one of THE more important treatments I need to do, but THE hardest one to stay committed to. I mean, it’s dreadful. I’m sure someone reading this knows exactly what I’m talking about. You must hold your head upside down, spray 1-2% povidone iodine (PI) solution into each side of the nose, allow the liquid to move through the different sinus cavities and wait there (still upside down) for 1-2 minutes. It’s what I imagine snorting wasabi would feel like, straight fire from the front of my face to the back of my head. A minute or so later, you stand up and use a budesonide saline lavage to flush the PI out and minimize the sinus inflammation that happens after. There are tears and congestion and coughing and sneezing…and spitting…sort of all at the same time. It’s as attractive as it sounds. I have a good run of it… for 10 days, then avoid doing it for 3 months, on repeat. It’s a tough one to stay committed to.
Chronic Rhino-Sinusitis (CSR)
In a few retrospective studies, 90% of chronically ill people with a history of exposure to mold in a WDB (Water-Damaged Building) had a positive urine mycotoxin test many years after said exposure occurred. The excretion of these toxins in the urine suggested that there is an internal source or reservoir for the ongoing production of mold toxins. Further studies showed that the nose and sinuses can and do harbor numerous fungal species with exposure. Essentially, the inhalation of fungal spores from toxigenic molds (specific to WDB) can colonize the sinuses and thrive in the moisture rich environment. As such, it becomes a source of continued exposure from within the patient (a reservoir).
Mold-Entry Point
WDB typically have a variety of mold and bacterial species that produce VOCs, mycotoxins and other noxious by-products circulating in the dust and the musty air – when a person is exposed to this environment, these by-products are inhaled through the nose and then passively through the sinuses. This is the mold-entry point, and is the primary internal surface exposed to the highest concentration of whatever we are breathing in (ie- in this scenario, mycotoxins). This concentration can build, and with inflammation, mold spores can become trapped, leading to the formation of biofilms (there is that word again, lol). The issue here is chronic persistence - essentially the sinuses continue to produce and release mycotoxins - these mycotoxins become absorbed into the bloodstream and travel to different areas in the body, creating illness (so gross to think about a mold biofilm in my sinuses). This is why antifungal nasal treatments are paramount to successfully clear mold.
For my case: During my time at FSU, I developed reactive airways, migraines, chronic sinus congestion and exercise-induced asthma. Once I graduated (and was no longer exposed to this contaminated building), the respiratory symptoms resolved. Then, about a year after contracting Bartonellosis, my body became more and more compromised, and I started developing recurrent sinus flares. At the time, we did not know of the past WBD exposure and it was presumed allergy-related (which has never been a historic problem for me). Dr Kinderlehrer reports seeing this time and time again in his book - Patients with severe mold exposure did not become clinical until their body was again challenged (or overwhelmed) by a system disruptor like Lyme, Bartonella or other complex illnesses. Each factor becomes a predisposition that feeds off each other making that person more susceptible to disease and impacting their capacity to fight an infection. He describes this as a “confluence of interacting issues that precipitate a disease state” that is 1) more difficult to treat 2) causes more severe symptoms and 3) won’t resolved without addressing each. Thus, most patients will not improve until you add nasal treatments in with their oral/systemic anti-fungal treatment.
Bottom-line: My poor compliance is only delaying my recovery. I have made a promise to Dr Barter and myself to do better (and I am good for my word) so there is a high likelihood that I will not break that promise.
Repeat Test Results | Trends and Expectations
The primary route mycotoxins are excreted from the body is via the urine (which is why the urine testing is most recommended). I had initial urine testing (in 2022) through both Great Plains Lab (now known as Mosaic Diagnostics) and Real Time Labs to gather a full picture of the mycotoxin distribution. About 20 months after starting mold treatment, my recheck levels were off the charts. It may seem counter intuitive that my results would be higher during treatment than they were pre-treatment, but it is not. Essentially, mycotoxins can be stored inside cells (leading to very low levels in the urine initially) and with treatment, the mycotoxins are pulled from these areas and processed for removal (leading to higher levels in the urine during treatment). Thus, the levels reflect the amount of mycotoxins being cleared by my body because of treatment - treatment increases clearance and urinary excretion.
Per Dr Barter, the results are amazing- “and trending as expected” - as she put it I am “dumping huge amounts of every mold toxin on the planet” all of which were FSU reported exposures. “Which means there was a very large back log and we are getting into major biofilms. Mycotoxins do remain a complicating issue” and absolutely predisposed me to this severity of Bartonellosis. To further enhance the release (and subsequent removal) of these toxins from my system, Dr Barter recommended continuing with Myofascial Therapy (MFT) which I had already started in December 2023. She advised no change to oral treatments but emphasized the need for me to consistently do the nasal therapy to directly target the sinus reservoir. And for those wondering -- We had comprehensive environmental testing of my home which remains normal – there is no external source of continued exposure. This is all coming from within my body (which again, is disgusting to think about)
Real-Time Labs (RTL) is now covered by Insurance
This is an exciting development for us patients! RTL is now fully accredited by the College of American Pathologists (CAP) and is officially a CLIA Certified clinical and environmental diagnostic lab for mycotoxin testing. It is now widely accepted by insurance companies and considered In-Network for Medicare, Medicare Advantage, Blue Cross Blue Shield and CareFirstMD. For those out-of-network, RTL’s experience is that the testing fees will be covered IF the private insurance deductible has been met. They will also provide the proper CPT codes so you can call your insurance company in advance. For patients in “Direct Access States”, you can self-order this test without a physician, making this more accessible to those lacking thorough medical care.
Cost of (and access to) care is already such burden, every little bit of savings helps. We plan to repeat testing again in a few months, hopefully I’ll be on the other side of the mid-treatment peak.
Recheck Summaries
There is more if you can believe it. For those interested in the details of other modifications, diagnoses and discussions, here are the summaries of all 6 rechecks appointments (Jan 2023 – Jan 2024) outlining respective treatment trends and changes.
Part 5
Mom’s Health
I am happy to report that Mom is doing much better. She is finally FULLY on the mend from her bought of covid in 2022. It took almost 16 months for her long-covid to fully resolve. It caused chronic lung changes, heart arrhythmias, severe fatigue and brain fog. She is still struggling with some memory issues and body weakness but has improved on all other fronts. During that time, she also had to undergo two eye surgeries (that were not the easiest to recover from) and had a second procedure requiring anesthesia. She made a full recovery from those and by her 70th, was feeling good again. It was a restful, but very special day!
She absolutely amazes me. Despite everything, she manages to do it all. I know my suffering is her suffering and can only imagine how tough these years have been for her (all the parents of patients out there know this well) – hopefully the worst is behind us and it will soon be her time! It is long overdue!
Our First Official Outing
The Estes Park Rooftop Rodeo! Rodeo is an enduring tradition that embodies a way of life and love of country. Every discipline blends performance and contest with pageantry and theater. I love every event except for the ones involving steers (tie-down, steer roping or wrestling), as most of my friends know…those events are my intermission, lol. Prior to this, the last time we were able to attend one together (which use to be an annual tradition) was 6 years ago, back in 2018…. It was Military Appreciation night and to no surprise, my best friend Hannah and her family were in attendance! We spotted each other in the stands! I did great during the event and had a blast but did need a recovery period the following week. Still, it was great.
Michael and Brooke’s 1 year Anniversary Surprise
After having their wedding plans delayed by CV19, my brother and his wife decided to elope in 2022. We attended remotely through a video link they set up. It was a beautiful ceremony. While every aspect of that day was special and cherished, we still wanted them to experience the traditional events that come with a wedding and started thinking about how or when we could make something happen. Well, after mom learned they were coming to Colorado for Thanksgiving (and my little’s 40th) she started planning an epic surprise - an official reception and 1 year anniversary!
Using their classic ‘Black and White’ theme, mom had a beautiful vision. She designed the cake, all decorations, the layout and carefully planned every detail down to the last flower. She’s always had an eye for design and event planning and transformed my dining room into an elegant venue. She requested they bring formal wear with no additional explanation. The night we planned to surprise them, it was snowing and they had no idea what we were doing, where we were going or what shoes to wear! While they were upstairs getting ready, mom and I worked to bring our vision to life. When they came back down and turned the corner, they were stunned in the best possible way. We had a version of the reception we always wanted. There was a best man speech (by my big brother, Joe), cutting of the cake, toasts, popping of champagne, their first dance as husband and wife, and mom and I were able to dance as mother-son and brother-sister. We savored every minute of that evening and took more than 600 pictures haha. Mom nailed it - a God-centered celebration of life, love and unity!
More Good Times with Great Friends
Kim flew in twice again last year! We were able to spend almost a week together this time and went for pedicures (which was amazing)
Shayna came into town with her husband Seth to have her horse evaluated at CSU. We were able to meet up for brunch with Hannah (one of my all-time favorite local friends and sisters in Christ). I was able to see Hannah twice (here with Shay and at the Roof Top Rodeo with mom) which was extra special. I hope to see her more locally in 2024 if symptoms allow.
We also had visits with Rachel, my long-standing Physical Therapist who came by to celebrate my 3-year anniversary since starting treatment (which was on March 2023), met up with Karen again over at the stables and mom was able to reconnect with one of her life long friends, Denise and John when they road-tripped through Colorado.
All these moments gave me a great reprieve from the day-to-day isolation and constant work of chronic illness. I am looking forward to the day I can reliably and consistently do things again, but until then these smaller moments add up to something pretty big.
Last BUT definitely NOT least, I want to specifically thank these amazing men who are my unsung heroes!
Over the past few years, Michael (my little brother), Matt and John have continued to be an unwavering source of strength and comfort. Michael has supported me, time and time again, emotionally, spiritually and financially. For years, him and his wife so graciously and generously absorbed the cost of my monthly supplements and medications. He surprised mom and I countless times during covid with food and necessary groceries making sure we never went without and still continually checks in to make sure my medication inventory (and pantry) is stocked. He has flown in to visit me multiple times knowing I am currently unable to travel and reads every word of these posts (even though it makes him so sad). I am so thankful God has blessed him with great success, good health and for his giving heart. He's taken a back seat for years now with the consumption of my illness and has been paramount in my staying afloat. Hopefully, as my healing continues, him, my older brother, Joe (who is also having a tough time medically from a past car accident) and my beautiful mom can become the priority and truly experience a reciprocal love. I know the duration of my situation is wearing on their souls. John (he is the 2nd picture) continues to look after mom and I by maintaining the sprinklers, the yard, taking care of plumbing issues, construction, and offering to help in any way he can. He checks in once a month, prays for us constantly and has given me multiple, unexpected donations. Dr. Matt continues to provide us both with access to medical care and infusions that we otherwise would not be able to receive – He has been part of both mom and I’s medical team, helped me start Buhner’s Protocol way back in 2019 while my Bartonella test results were pending and has done so many special things to bring mom and I joy over the years. They are of the most gracious people I have ever known, and it is an honor to call them our friends and family. Thank you for all you do!
I say this often, but I’m an absolute product of those I’ve loved along the way and those who love me. I couldn’t do this without all the amazing people in our life. I hope I can soon be as much of a blessing to them as they are to me!
Alright! That’s a wrap! We made it! All 14 months of it! If you made it to this here, you're a champ! Thank you so SO much for taking the time to read through. I hope I was able to make it informative for other patients while keeping it relevant for my friends and family. It has been one of the harder updates to construct. While this post will be published with a back-date of March 7, 2024, this update was officially finished in middle of June! Crazy. And to my mom, who is my editor and chief here, thank you for always helping me re-vamp and organize my thoughts!
Hopefully if all goes well in the next few months, I’ll be posting a much shorter update covering MUCH less time!! Please God, let that be the case!
'Strong' by Anne Wilson
Update 7 Slide Show
Jesus knows the depths of human despair and because of that He can offer hope.
We receive mercy and find grace to help us in our time of need.
He uniquely meets us and cares for us in our moments of darkness.
Trust even in the uncertainty, through the landscape of your circumstances
He will take your doubt, your fear and your sorrow.
January 20th, 2024
