Update 1: 14 Weeks into Treatment
Updated: Sep 11, 2020
This disease is THE most complicated relationship I have ever been in!!!! It is abusive, selfish, needy, unreliable, inflammatory, easily angered, always hungry, emotionally draining, calculated…! BUT we do still have our good days! I had every intention on posting an update much sooner than today…July 24th… but am working on Bartonella’s schedule for now! In fact, this exact post was written almost 5 weeks ago, then delayed, then updated 3 weeks ago… So, here we are. I am exhausted, with another fever, head pain and all the things Bartonellosis does best! Not a really good day for me but going to attempt giving this a final read and if you see this timestamped 7/24, then it was a success!
July 5th, 2020: 14 Weeks into Treatment
Goodness!!! Japanese Knotweed packs a punch! Been MIA for a good while, might finally be starting to level out! Today is July 5th… My birthday is next Thursday, the 16th! The big 3-8! I am excited, This birthday is different than the last few. We have a definitive diagnosis, an aggressive treatment plan and have learned so much more about the disease. Hoping it is the year of healing and maybe some rebuilding!
Okay, Phase 1 (of 3) has been quite productive. Treatment was started on March 30th, 2020. As I mentioned previously in the "What's the Treatment Plan section" of blog “Part 2”, my protocol incorporates both Eastern and Western medicines. Our primary antibiotic is Rifamycin-based, but cannot be started until there is improvement in my adrenal function and hormones. This protocol builds, using poly-antimicrobrial therapy to combat the bacteria’s complex characteristics, lag phase (the period where the individual bacteria are maturing but not yet dividing), stationary phases (the period where bacteria remain consistent in population so the rate of death equals the rate of new growth) and niches. Our protocol plan includes RX: Bactrim, Clarithromycin, Rifampin, +/- Rifabutin, Methylene Blue (for Interstitial Cystitis like symptoms, also has antimicrobrial properties) and herbals: Japanese knotwood and banderol.
Phase 1 goals were to introduce all additional supplements, new dosages, hormone replacement therapy, more aggressive adrenal support, and to slowly up-titrate Bactrim (TMS) and herbal antibiotics (Banderol and Japanese Knotwood).
Another integral part of this phase was to focus on my Mast Cell Activation Syndrome (MCAS) and Interstitial Cystitis-like symptoms (IC). It took me a good bit of time to complete. We had to adjust for the side effects, flare-ups and in addition to usual symptoms of chronic cyclic bacteremia, there are secondary die-off reactions caused by the antimicrobrials (called a Jarish-Hexheimer Reaction). A blog post discussing this reaction and it’s significance is coming soon. In short, it is an adverse reaction that occurs in response to endotoxin-like products released by bacterial death within the body during antibiotic treatment (what I call a “die-off” reaction). Basically, the bacterial death occurs at a higher rate than our body is able to clear. We get a backlog of dead bacteria in our bloodstream which takes time for the body to expel. The build-up makes our symptomology worse but also comes with it’s own specific, sometimes unbearable symptoms. This is not a new reaction, but it is a new term to most. It has been heavily documented in treatment of Leptospirosis, Syphilis, Lyme, Rocky Mountain Spotted Fever, Bartonella, etc and can occur in humans and animals. It is a bittersweet reaction, paradoxically, it means the medicine is working. We say “If you’re not herxing, you are not healing”. At least that is what I say. It’s still miserable. The challenge is making sure this reaction is NOT worse than the disease or you’re body really decompensates something fierce (more on that later). It is one of the limiting factors during treatment and one of the reasons Phase I has taken me so long… BUT, MY POINT….I am happy to say on June 11, 2020…. Phase 1 was officially completed: All new meds have been incorporated at their full recommended dosages.
It is incredible what our bodies can sustain and adapt to. Paying close attention to changes really helped alter our Phase 1 timeline accordingly. Bartonellosis is challenging. It is a constant back-and-forth battle. This bacteria, that relies on my body, my cellular nutrients and systemic immunomodulation/disruption to survive is now being progressively provoked as each new phase assembles.
While the antimicrobials remain the priority weapon, supporting your body by providing specific supplementation to correct for the nutrient depletion and acquired deficiencies is paramount. Doing our best to give our body the tools to pursue homeostasis is crucial. With chronic illness, your body becomes fragmented, all the while compensating; compensating toward an equilibrium it will never attain without help. Providing elements toward the tendency of a stable equilibrium between interdependent elements, especially as maintained by physiologic process, innately makes our host environment less hospitable for pathogens. It gives us a better chance at battling. Tips the scales, if you will.
Over the last 3 months, I have had some subtle improvements in a few areas, which my doc tells me is huge in this situation :) The herbals were more difficult to up-titrate than synthetic antibiotic, Bactrim! They absolutely pack a punch and are not to be underestimated!! The herx reaction was quite profound and slowly built including photophobia, worsening of my postural tachycardia, myofascial pain and tightening, skin rashes, skin hypersensitivity, increased pain response, shortness of breath, headache-migraine, tremors, fever, myalgia and exhausted my already poor energy level…just to name a few. I also had what felt like stroke-like symptoms for about 7 days, it was terrifying. I had severe facial pain, piercing tinnitus, profound postural tachycardia, but the most serious of symptoms was this weird influx of intracranial pressure. I literally could not sustain any positional transitions. Bending down resulted in a deafening, darkening head pressure. There was a few nights I debated if this was it… if I was stroking out. Reluctant to venture to an ER, my doc was very responsive. Luckily, Dr. JB said it is not an uncommon complaint, mainly from vascular shifts and likely a herx related reaction. Bartonella causes endothelial inflammation and damage, this can be exacerbated with die off, shifts in pressure and alterations in flow are common. Whatever it was, it improved with each day and I am thankful it has NOT recurred. It felt like a pug looks. You know, the ones whose eyes are about to pop out! It was frightening and terrible (and led to the purchase of a blood pressure machine).
It has now been 3 anguished weeks since completing Phase 1, full of forward progress, discomfort and one hell of a prolonged herx. I have remained on max doses of each medication, consistently, but enhanced my detox methods. Doing my best to stay the course. Pushing on is challenging when you are facing such a complex disease and myriad of continual symptoms. July 2nd, has been my best day yet despite being full of disease reminders. And while it has been a positive 2-3 days thereafter, the good undoubtedly remains followed by bad, but I am thankful to be granted both.
I haven’t started Phase 2 quite yet, but am really anxious to add in Clarithromycin. This disease is an exhibition in patience… my doc emphasizes the importance of staging each advancement as to not overwhelm my body (which is incredibly easy to do with this disease). My life revolves around medication administration. I should post this med schedule, anyone reading this with Vector Borne Disease absolutely understands. It is a full-time job. On days of severe mental confusion, I have screwed up my meds multiple times… I’m a Doctor and even have them in those idiot-proof pill containers, yet still managed a mistake! Those days absolutely scare me, and I wonder if my cognition will recover back to my standards necessary to practice medicine again. In the meantime, I try to partake in a RACE approved Veterinary CE webinars every 2 weeks and read medical journals to stay current. Some days, an hour of that tanks me for the entire day.
Everyday, we have been setting small attainable goals. Being constructive is healing and these small goals provide purpose and contribution. This might look like a car ride through the countryside, windows open, music playing and my dog smiling in the wind, a dog walk, getting the mail, reading an article, doing a small home organizational project, practicing positional transitions to water the plants and do some gardening, etc. Even though these are everyday things, maybe things you do without any thought, even in their simplicity, it shifts my attitude and perspective. It feels like an accomplishment. It feels like freedom.
I have not been able to do any formal Physical Therapy since Feb 2020. Initially, we were taking a week or two off due to the severity of limitation with my right Achilles injury a PT session or two prior. It was around the same time CV19 was changing the world. Given it’s progression, I’ve sadly not been able to re-enter any of my formal rehab (including Acupuncture, Chiropractor, Myofascial Massage, Physical Therapy, Aquatic Therapy). Even though some businesses are reopening, with my immune suppression and complicated Bartonellosis disease process, the risk remains high with a recommendation to continue to isolate. I am excited and hopeful to return soon. It really makes all the difference. Dr. Kronke (my DPT) recommended focusing on positional transitions and repetition for muscle memory and flexibility. Especially with my severe exertional fatigue, any repetitive muscle contraction results in prolonged poor outcomes. My body can’t handle it, even isometric contractions. Doc said that is expected with my degree of mitochondrial dysfunction and cellular nutrient depletion.
Even with that, we have been able to plant some flowers and put down mulch. We would do 10 minutes a day, practicing positional transitions to get my body moving, eventually worked up to 30 minutes with breaks. We planted about 20 plants in the last 12 weeks. Beautifully healing, especially on house arrest. By end of May I was able to sweep the sidewalk again!! The simplest things truly feel liberating.
The BIGGEST gift, especially for my mental health, is being able to walk my dog, Pancake again. In total, we have taken 16 formal walks over the last 3 months and were able to advance to a natural space with slight irregularities in terrain. Sixteen walks in 90-ish days, may seem like nothing, especially given my pre-illness activity level….but this has been everything. Being able to do some light gardening and spending time in nature with my girl, Pancake and mom…. That’s my kind of church!
We have had some big blessings. My friend Sam surprised me with the most amazing sunflowers, which were almost a month+ delayed yet arrived perfectly on time Thursday, June 11th. (which was the day all Phase 1 meds were finally at full dose). Dr. Kronke found a stationary bike for at home rehab. It was so generously donated by Heather, who was in Pilates PT rehab class with me and witnessed my struggles. It is beautiful. Dr. Kronke took care of all details and delivered it just this week. We also found a cost-efficient stair stepper and acquired more at home PT equipment. Another big blessing…We finally found the right Far Infrared Sauna for my situation. It is a DME, medical grade FIR Sauna from Radiant Health Sauna in Canada. It has some of the most sophisticated technology and more importantly, consistent laboratory testing proving low EMFs and VOC exposure. They even offered an incredibly generous discount to help with the cost. It is a valuable long-term investment but the best part….It will allow me to pursue this therapy safely at home during CV19. It should be here in about 8 weeks.
I struggle every day, with some persistent and different symptoms of alternating proportion. However, I continue to focus on the positive and given the circumstances, extend myself some grace. This is only Phase I! It is a long road! We have learned so much more about this disease and continue to apply those lessons to the translation of my day-to-day functional capacity. I feel bad for mom though, some days I barely converse, it must be so lonely for her.
Bloodwork was rechecked on 5/2, with my doctor recheck on 5/8. LET ME TELL YOU….my Doctor is a BEAST. Seriously! IT FEELS AMAZING to finally be able to be a patient. With a disease that is categorized as “rare” you are constantly self-educating and advocating because most medical professionals have zero understanding of the complexities of said disease. Finding such a thorough, highly-trained doc made all the difference. She battles for me. I have been able to let my guard down and trust Doctor’s again. Well, at least this Doctor. I wish that for so many. If anyone is in the US needs a doc recommendation, send me a message- she is exceptional.
Overall, recheck bloodwork looked fairly good. My immune suppression remains present. My neutrophils are low at 1.5k and total White Blood Cell count is low at 3.4k. My Kidney and liver values are looking great. My hormones are a teeny tiny bit better; I am at least registering! I was borderline hypercalcemic, both vitamin D and Calcium were slightly high for this specific disease process. Cortisol is far from where it needs to be to start Rifampin. My albumin and total proteins are approaching the higher end of normal. Following suit with my adrenal fatigue, I am borderline hyponatremic and hyperkalemic with a Na/K ratio of 27. Overall, Pretty damn good news! Nothing is worse!
Doc made some strong changes and scripted Phase 2 antibiotic, Clarithromycin for me to start when appropriate. Honestly, we thought finishing Phase 1 was around the corner, but in total, has taken about 3+ months. I’m still in it. She added in some new meds for my leukopenia, rising protein levels, increased my adrenal support, increased my testosterone therapy and DHEA. I took a ton of notes during the Teleconsult, which outline our recheck progression, treatment changes and clinical assessment. Since I am easily overwhelmed, we also voice recorded our Doctor appointment and later added to those notes. I’ll post sometime soon for anyone who might find that useful in relation to their own treatment protocol and disease. It might be helpful for any Bartonellosis patients, we learned a lot.
My latest recheck of BW was on 6/24/2020 (included Ferritin, Phosphorus, CMP, CBC, Testosterone free and total, Progesterone, Estradiol, DHEA, Cortisol, Vitamin D1,25 and 25, Magnesium and UA). My next Telemedicine Recheck is on 7/9/2020. The fatigue has been so unmanageable, July 9th can’t come soon enough.
Okay, symptom check:
The good: The subtle improvements!!!
1. Severe Joint Pain, Long Bone Pain and Muscle Pain: slight improvement
More bearable, remains constant but varying with a tendency toward mild-moderate radiating pain rather than continually severe.
Severely debilitating days: still occur, there is short-lived reprieve in between.
When those debilitating days come, I often can’t believe I lived like that for months and months on end. Vector Borne disease is really so crippling.
2. Spinal Pain: My Biggest Improvement
My spinous processes are not as sensitive to touch.
Prior to treatment, any spinal pressure (sleeping, sitting in a chair, laying on a mat to do PT, my sports bra..) was excruciating and unbearable. My spinal ROM is better and my spinous processes are not as hypersensitive to pressure. This is huge, especially for my quality of life!
3. Muscle Spasms: Continuing but more moderate
4. My menstrual cycle is actually occurring so hopefully that translates to improvement in my reproductive health and hormone regulation (I’d love to be a momma).
5. Mental Stamina and Shortness of Breath:
My ability to expel air prior to treatment had become quite challenging by the end of December 2019. By Feb 2020, my Pulmonary Function Tests were suboptimal. Albuterol helps on these days but feeling like you can’t fully expand your chest and get a deep inhale, it’s so uncomfortable
Prior to starting treatment any increased oxygen or energy consumption (ie) talking, laughing, holding a conversation) was approaching impossible. Would result in an elevated heart rate, increased respiratory rate, visual disturbances, and lightheadedness, promptly followed with immense fatigue lasting days. On the “good days” it has been really healing to be able to converse more with my mom, family and a few of my friends. I can hold a conversation without risk of passing out. An intermittent gift but I’ll take it!
Engaging in prolonged, unplanned communication still tanks me but I am becoming less exhausted during/after short cordial exchanges with my neighbors
My energy and mental capacity continue to be inconsistent ie) somedays I can read or do one task, but for the rest of the day I cannot invest in anything that requires mental aptitude, during which, I spend most my time outside in the garden… other days I can make no phone calls and minimally engage in conversation, even with mom.
My mental confusion and delayed processing are personally vividly apparent to my pre-illness normal. Mom says I hide it well. Some days, my mind feels incapable, other days, it can process but not interact, then some days I can do both… and then some I can’t be mentally constructive. It is so strange.
1. Exertional Fatigue: severe
I have developed severe muscle atrophy (likely from my non-existent testosterone levels) but also have no muscle stamina. Also, everything jiggles. There are days where I can not walk up the stairs without taking short breaks before getting to my room. We have like 10 steps!!! It is really unsettling but with my degree of nutrient depletion and mitochondrial dysfunction, the Doc says is expected.
2. Photophobia: continues to be a point of limitation. This is blue-light, digital device related ie) the cell phone, laptop, tv. We have added blue-light blocking screen protectors, blue light glasses and downloaded F.Lux where possible.
3. Tremors: Hand tremors remain intermittently severe.
In my normal life, I had the most reliable, steady hand. It was something I took much pride in as an Emergency Veterinarian who does many trauma procedures.
My grip strength is also poor. I have days where I can not hold my cell phone without severe difficulty.
4. Mental confusion, delay in processing and overall, clarity remains a challenge.
5. Some Mild Dissociation:
Have started to experience some slight dissociation, which means I detach from the complexities of this disease, how it has impacted my life and the worldly events. It means I am disconnected. I know what is real or not real, it is more so an emotional disconnect to certain things…which might be a good thing given the state of our nation and my severity of immune compromise during a pandemic
6. Any stress (good, happy or bad) spirals my symptoms and tanks my energy:
Have to practice restraint and distance from current events and present stressors. Minimizing stress is imperative to fighting this bacteria and my recovery. My body just does not respond well, it can’t handle any discord.
Any energy I invest into any of my passions comes with a costly price to functional endurance, this blog included.
Any attempt to stay educated on evolving current events, both nationally and globally, especially our politics occurs infrequently, at a distance and kept to a minimum. So much about our current climate is inflammatory and destructive to recovery, this disease thrives off stress and imbalance. There is no shortage of that in our current climate. The mild dissociative developments are helping with that.
The ugly: My GI tract…my gosh…I am embarrassingly gassy, it is so gross… like methane. There is a good chance I’m flammable. It even irritates Jake (my air purifier). Let me tell you how glamorous it is to know you can cause a shift in indoor air quality to such an extent that your air purifier autodetects that change. Great stuff. Poor Mom though, Pancake doesn’t seem to care! Enough said about the ugly column.
This list is not all inclusive and the improvements do not reflect resolution. Symptoms are constantly throwing a different flavor but even the slightest improvement is HUGE in this situation. I am going to try to think of better ways to share trends for comparison. Learning of other patient’s experiences has really helped my expectations. There is a lot to be thankful for in these first 3 months…especially the subtle improvements in pain.
Alright, I’ll leave it here!
Hopefully the next update will be sooner :)