Update #2: 28 Weeks into Treatment
Updated: May 12, 2021
[Symptom Charts below]
What the heck... I feel like I am in an epic time warp. That feeling where things are moving at a snail's pace yet everything around you is a blur, time just coalescing…hours turn into weeks and weeks turn into months, all at the blink of an eye. It is August 25th already...such a strange year. Been struggling for motivation to write an update, mainly because there are so many moving parts to think through, but hoping to keep this one much shorter than the last.
It has been a very productive few months since my last post. Let’s see. I am physically a little less painful and notably less hypermobile in certain joints (elbows are less hyperextended). My skin has improved elasticity (especially on my face), my photophobia is less severe and my depth of sleep is much more restorative. Have been able to communicate with family better, laugh a few times and occasionally have a good conversation with my family without feeling like I am going to pass out (although a good laugh depletes any available energy). I can have more impromptu conversations with neighbors and have been able to sing in the car ONCE for 30 seconds before my vocal folds started spasming (and I was coughing up a lung). Those that know me well, know I love driving the countryside and singing to my music…radio up, windows down, Pancake nearby!! What else... I am feeling strong while simultaneously being so weak. Exhausted. Motivated. Isolated. N95 masked (dueling pandemic and poor air quality from wildfires). Mentally a little less sharp. Some unsettling developments like mild confusion, disorientation, forgetfulness, some issues with executive function…easily overwhelmed, very singular (cannot multi-task), small panic attacks and dissociation…all part of the neurologic and neurocognitive aspects of Bartonellosis. Speaking of, I just signed a release of medical information for a Case Report.
I am 1 year older, which obviously means I am wiser, haha (am a July baby). That’s right, officially 38! What I would consider our prime… but instead of crushing goals, I am pretty damn stoked to put my clothes on without losing balance. My birthday was perfect, my pain was manageable. It was very relaxing, mom made it incredibly special. We spent most of the day on the back patio playing Cuban Domino’s listening to music. We finished out the day walking Pancake, saw a double rainbow then Face-Timed with the fam. I really feel blessed to be surrounded by so much love.
The newest development is excruciating and debilitating hand pain. With any repetition, my small joints become painful (almost feeling like they are lined with concrete), my fascia becomes so tight that my hand resorts to a flexed fist-like position, my distal forearm develops muscle spasms and my hands become useless. For example, there were days where holding silverware or the tv remote, texting a friend, washing my hair or typing on the computer was impossible. Massage, heat, and cupping of my forearm help significantly but the residual tendonitis-like pain recently landed me in hand braces.
Pancake had a scare in August but is fully recovered from an Acute Liver Injury (thank God). I love her. Cause unknown, her recheck bloodwork was normal, and her convalescent leptospirosis titers were negative!!!! She thankfully responded to supportive care and I am very thankful for her amazing internist, Dr. Karen Hilling at Aspen Meadows Veterinary Specialists! I could not be more thankful.
Mostly been a sedentary August, now a sedentary September, no recent walks with the Wildfire Pollutants. The Cameron Peak Fire is nearby, and our smoke has merged with that of the Pacific Northwest fires via the jet stream. On bad days Pancake even masks up with me to use the potty while I water the plants. I’ve become highly sensitive to many things and have to pay attention to Air Quality Index. Makes me sad thinking of all the destruction and displaced animals…Wildland Firefighters are a special breed! Also….the ER doc in me dies a little every time I see an owner running their dog in 90+ degree weather during a severe Air Quality Alert with all that nasty particulate matter…Really??? Make better choices! Moving on… Oh gosh, I am still gassy! BUT I have slightly more energy and was able to walk up the stairs now 3 times without having to take a break! Count it!
Where I am at:
Phase 1 took about 5 months. We have moved into Phase 2, starting Aug 8th and am currently halfway through. It has proven to be quite the challenge. There is nothing easy about it, but moving along, slow and steady!
It does feels rewarding to report the progress there but is a bit deceiving because there is still a long road ahead. My adrenal function is still quite low. In order to add in the 3rd antibiotic (Rifampin), my Adrenal number’s need to, at minimum, double their current levels.
This was one of the most sufferable months on record. On July 9th, I had my 2nd telemedicine recheck! This made ALL the difference in my daily quality. Turns out, I was just punishing myself with my determination to maintain the suggested maximum antibiotic dose.
If you have been following my Instagram posts (@Recovery_updates or on website newsfeed), then you will see the pattern of struggle with Japanese Knotweed (JKW) throughout June and July. It was an incredible barrage of symptomatic struggle. So, what happened?? Well, the last moving part of Phase 1 was to incrementally increase my JKW dose from 500 mg three times a day to 1000 mg three times a day, doubling my daily dose. On 6/11/2020, we made it! All goals met, next up Phase 2!
After attaining each new goal, we have to monitor my response closely for ~2 weeks to make sure there are no complicating reactions either from my inflammatory response to bacterial die-off (aka Jarisch-Herxheimer Reaction) or from my Mast Cell Activation Syndrome. So, while it feels amazing to get there, my ability to progress through treatment is also dependent on my overall response or reaction.
Have you ever heard the phrase “Suffer Score”? It is a term my brother introduced me to during the many years he was a competitive cyclist. It is a way of measuring how hard you worked…elevation gain, calories burned, minutes elapsed, heart rate, speed…it is a way to quantify your effort for that race or training session. Your perceived level of effort and associated accomplishment. Pre-Illness days, I was a big trail runner, and nothing felt more rewarding than grinding through elevation on a mountain side to reach the beautiful ridge view with my dog. For athletes, Suffer Score is a way of pushing to the next level. Mind over matter! But there is no mind over matter in this disease. Matter MATTERS! The ‘Bartonellosis reality’ is that pushing through just causes actual suffering with no gains and abundant loss!
I did not recognize the collateral of my determination during Phase 1. Every part of me wanted to be able to be on these higher doses, just so I could make sure I was doing everything in my power to fight this bug. In total, I experienced about 4-5 weeks of symptomatic decline, illness, excruciating migraines, progressive confusion, cognitive changes and a long list of other various dysfunctions. That was my June…
Upon entering July, I thought things were finally leveling out. I had a one-off pretty “good” day and decided it was time to keep pushing forward. Phase 2!!! Officially started working in Clarithromycin!! I am excited…which did not last long. Talk about adding insult to injury, my body spiraled. Thankfully, Recheck #2 was a few days later. As we entered into my 2-hour comprehensive recheck on July 9th, Dr. JB recognized it immediately. I was visibly ill with severe head, eye and migraine pain. Just 3 days after starting Clarithromycin, I was directed to stop the medication and redefine what my body’s max tolerable doses are for Bactrim and the herbal pharmaceuticals. She decreased my dose of Japanese Knotwood and Banderol, Bactrim remained unchanged. The body is resilient, but can only do so much here. This disease is interesting, I am constantly reminded that the reaction to bacterial death is just as detrimental as the pathophysiology of the bacteremia itself. Our strategy needs to be smarter than Bartonella’s advancing evolutions. It felt like Bartonella won a round though. I was disappointed for a few days then started reaping the benefits of my doctor’s changes!
Other treatment changes included the addition of Physiologic Hydrocorisone (to offset my low cortisol), an electrolyte supplement (for my hyponatremia [low sodium] and borderline hyperkalemia [elevated potassium]), a binder (to help bind to- and then excrete any unwanted by-products of detoxing, especially with sauna use), a supplement to help with my bone marrow production/leukopenia (Astragulus) and muscle relaxer (called Baclofen) for my migraines and muscle spasms.
Every change provided an exceptional, notable benefit to my daily quality of life.
Meh, August. It is a blur. Pancake became ill on 8/1 and by 8/31, had THANKFULLY made a full recovery. It was overwhelming and required most of my available attention. I hated seeing her so sick, but could not be more grateful for her response to therapy. She brings me such comfort and joy. The happiness and love this girl brings into my life, especially while so sick, is everything. The idea of something happening to her was stifling. She is my mental health.
From a progress standpoint, I can tell you the changes my Doctor made in July brought me a migraine-free August… not ONE migraine….AMAZING! I was averaging 10-20/month, with migraine hangovers and daily headaches prior to this. The headaches are still occurring but what a HUGE reprieve! Around this time, I was re-introducing Clarithromycin and began developing some dental changes. A few hours after taking Clarithromycin, a disgusting metallic taste would develop. There is a lot of things I can tolerate; this is not one of them. This antibiotic is known to block absorption of Zinc (which can lead to deficiency and the foul metallic taste). Zinc 60 mg was added for daily use per Dr. JB’s advisement, but no resolution has been attained (yet). Later the next week, some external teeth staining near salivary ducts started to develop. There was accompanying lingual gingivitis, TMJ and tooth pain. This was not unexpected and while rare, does occur with Clarithromycin use. Dr. JB suspected the extrinsic staining was from an alteration in oral microflora and die-off reaction from my bacterial burden.
It is September 27th now…
Fall is officially here!!!! The disgusting taste in my mouth is getting better but still wakes me up at night. Since adding in the morning dose of Clarithromycin, I have developed an unquenchable thirst, drinking 3-4 Liters per day. My Kidney Filtration Rate (GFR) is improved . My Leukopenia and Neutropenia have improved as well. Total White Blood Cell Count and Neutrophils are registering within the normal range. The cyclic bacteremia can cause intermittent or chronic bone marrow suppression. Future blood draws might reveal recurrence, but it sure does make me feel a little more comfortable in a pandemic. Pancake is feeling great and we had 3-4 days this month with reasonable Air Quality to go on a walk!
My 3rd recheck was on 9/4 (the Denver Location). It was positive and per usual, incredibly constructive (which also means exhausting). Dr. JB made a few more alterations including the addition of Methylene Blue. This medication is heavily used in Interstitial Cystitis patients and found in combination medications like Urogesic. My Urologist was good with the addition as well. A recent study showed it's antibacterial benefits, especially against Bartonella species. Hopkington Drug compounded the formula. She ordered a RBC elements test to re-evaluate my essential mineral deficiencies and assess for heavy metals toxicities. Baclofen was increased to daily use and Chlorella to twice daily dosing.
Recommended recheck in 6 weeks. Thankfully it is Telemedicine!! While I love my appointments, the constructive evaluation, feedback, her thorough physical exams and assessment, they require a recovery period. It really is a humbling reminder of the reality of my current state. I was useless for 3 days and took a full week to get back to my illness baseline. Being actively present during each appointment takes a toll but adding in that commute, it was just too much. Honestly, anything I choose to invest my efforts in (a phone conversation, Veterinary CE, laughing, reading, this blog) comes at a massive cost.
Over the last 4 months (June-September), I have continued to experience subtle improvements while also having some decline and onset of new symptoms. I am continuing to feel an overall improvement. Each chart reflects symptoms at time of that specific recheck. It is a chart I use to compare symptoms during each progression.
It is now ‘Week 28’ of Treatment… and I have had even more subtle improvements. I am nowhere near the end of this fight, but no longer at the beginning. My resolve is much more focused. Those that know me, know I am good at the long game and no stranger to hard work and sacrifice. I always have some sort of aspiration or purposeful intent I am working toward. I am passionate about positively contributing to another’s life, even in the smallest of ways, having things to be excited about and work for…it is the essence of happiness. My life feels very narrowed and my world, intentionally small. This blog has helped with this and connected me with a multitude of Veterinarians who are also silently suffering from this disease. It aided in the diagnosis of another, who just started treatment. I tell ya, the suffering feels more tolerable knowing it is not for nothing. In order to mentally maintain, I try to redefine my goals at every new stage of my treatment. These days (like I mentioned above), I am excited about getting dressed without losing my balance or being able to lift my leg from a seated position to put on my shoe! It is amazing what I can and cannot do. The small wins are everything!
Overall, I am thrilled with the progress and more importantly, I feel different. This time last year I had just enrolled in the Bartonellosis Study at the Intracellular Pathogens Research Lab and was anxiously awaiting results. I truly thought this was it…that I was slowly dying and it was only a matter of time before I faded past the line of no return. While 2020 has been such a torturous year for everyone, it is the same year that brought me hope. It is the year that gave me answers, a diagnosis, and a treatment. It is the year that saved my life while so many have lost theirs. Which all still feels surreal, probably because of the derealization/mild dissociation I am neurologically experiencing.
Every now and then, I find myself wading through a pool of thoughts mixed with angst and an eagerness to begin rebuilding and redefining my post-illness life and career. I often wonder if I will be able to have kids and be a momma? How will my joints handle the burden of strength training once I am allowed to re-enter PT? What orthopedic surgeries will I need, if any…? How will I know what my body can handle?? What will be my limits to avoid a relapse or recurrent decline…? Will I be able to handle the epic mountain recreation I love so much…that rewarding physical demand? Will I be mentally capable enough to practice Emergency Medicine? If I am, should I?? Could this have been avoided if my previous employer would have let me seek medical attention sooner instead of making me wait for the Swing Doctor to get in?? Mostly, I wonder what it will feel like to be able to experience liberation from the constant restraint, mouth full of pills and calculated patience this disease requires. It is tedious. Everything is documented to objectively assess a development retrospectively. Otherwise, I get confused and overwhelmed. Notes like this are all over the house. It is an exhibition in patience.
I am continually blown away by the catastrophic capabilities of this bacteria’s reach.
It is now October 8th, by the way… in the last week, my left knee popped upon standing from a kneeling position. Did I over do it? Nope, just knelt down to grab a book. It was swollen for few days. Then from limping, my right knee became painful…only for my back symptoms to correspondingly flare. The sheer magnitude of PTSD with the back pain and radicular symptoms is oppressive. I’m back on the TENS Unit and doing all the things. Every area that is newly inflamed has an associated skin rash and erythema (redness). At least we know why this stuff is happening now. This disease really sucks. Makes me sad.
Alright, let’s get this thing finalized before November.
Pictures of the last 4 months: