Update 4: 51 weeks into treatment!
Updated: Aug 1
I am having the hardest time getting this update written. You would think these updates would get easier with time, but honestly the 10,000 moving parts of this disease are just exhausting to assimilate. It seems so much easier for me to connect with the science rather than personal difficulties of the day-to-day with chronic illness.
Week 47 held this updates initial attempt; it is now week 51! 51 weeks since starting treatment. It is surreal to say we're almost a year into treatment. BUT incredible to reflect on how sick I was this time last year, 2 years, 3 years, now 4 years later, and know that my path is no longer defined by mystery and decline, but by understanding, treatment and improvements. Subtle improvements have continued to build throughout each stage of my protocol. And with each advancement also comes great excitement. This is when I can see, feel and just objectively experience progress, even in the smallest of forms.
This disease requires such a fine balance. Personally, this balance is between acceptance, patience, grieving, determination, and hope. Medically, it is about the right treatment, at the right time, with the right dose…for the right duration…objectives still being defined by mounting research. Patients before me paved the road for expectation and treatment structure. Many were able to achieve successful remission of symptoms. I will get there…almost 1 year down, and an unknown amount more to go!
2020 finished out with my 5th recheck (December 31st). I was thrilled to learn that after 8 months on combination antibiotic treatment, hormone replacement therapy, adrenal support, and 5 months on physiologic hydrocortisone that my adrenal testing showed significant improvement!! Enough improvement to add in the THIRD of three antibiotics, Rifampin. That's right... PHASE 3!!!!
Rifampin is a rifamycin based antibiotic. It crosses the Blood Brain Barrier (BBB) and Blood-CSF barrier, readily penetrating the Cerebral Extracellular Matrix (CES) and CSF (cerebrospinal fluid) respectively. Bacterial infections in the brain spread through the Cerebral Extracellular Matrix (the CES). Like me, many Bartonellosis patients demonstrate extensive neurologic manifestations. Rifampin really targets this, among other things. Getting to this point has been extremely rewarding, especially with my plethora of neurologic symptoms. During use, Rifampin increases the metabolism of cortisol and other hormones. Patients with pre-existing adrenal insufficiency need close monitoring and likely increased dosing of current HRT (hormone replacement therapy). Liver injury has also been reported. This can be direct injury from the medication itself or transient, inconsequential and resolve over time. In Bartonellosis patients it has been proposed that a mild elevation in liver function tests (LFTs) may be secondary to rifampin targeting the infection in and around the liver. It is hard to truly know which one is the culprit when it does happen so close monitoring is recommended.
I started Rifampin on Jan 23, 2021 at 150 mg once a day. The plan is to slowly up-titrate every 4 weeks, with the end goal of 600 mg twice a day (If my body cannot handle twice daily dosing then 600 mg once daily becomes the goal). Getting to this point can take many months. The limiting factor is your severity of Jarisch-Herxheimer reactions (reaction to bacterial death which releases endotoxins into the bloodstream- bartonella's is called Lipid A), liver function tests and adrenal parameters. Like all things with Bartonellosis, ‘Low and Slow’ remains the priority.
Once Rifampin is at my maximum tolerable dose, the combination antibiotics (Bactrim, Clarithromycin and Rifampin) will be continued for 6 months duration. At the 6-month mark, the rifampin will be switched out for his big brother, rifabutin. The combination is continued months beyond symptom resolution and will require repeated negative findings on serial diagnostics through Galaxy Diagnostics and Dr. Mozayeni’s T-Lab. One step closer!
Since starting rifampin, things are more challenging than my usual difficulty. A few days after starting the medication I developed severe exhaustion. A few days after that, it popped off my neuropsychiatric symptoms. I was not surprised by the exhaustion, especially knowing how rifampin works on hormonal metabolism, but the mental health part, that was the hardest. Dr Barter and other people in the support group warned me of this, but it really caught me off guard. It was almost like an outer body experience. I knew these feelings and emotions were abnormal. I could evaluate them while they were happening and knew the difference, but I lacked any control to stop them. It was as if I had no control of this area of my mind. It was a terrible feeling.
Usually, I can identify symptoms uncharacteristic to my personality and mute them by identifying what is disease related and what is historically true to me. There was anxiety, nightmares, irritability, frustration, deeper depression, and I was very easy to anger. Anyone who knows me KNOWS I am not an angry person…irritable, sure…angry, absolutely not. It also caused slight worsening of my tinnitus, tremors, shooting pains (radicular pain), migraines, facial pain, auditory hallucinations, joint pain, myofascial pain, nausea, and caused a decrease in appetite. By week 4, these symptoms were subsiding (thankfully). My psychologist perfectly timed her return from maternity leave and we had a great session! I do feel terrible for the Pharmacy Tech that had to deal with me. I returned to personally apologize for my behavior. I was even salty toward my dog, Pancake and mom got the brunt of it as well. Uncharacteristic and uncontrollable. Have you ever annoyed yourself?
Overall, I was feeling crummy…more crummy than normal. Dr. Barter rechecks bloodwork (BW) one month after starting rifampin to get an idea of what cortisol, other hormones and the liver is doing. Well, turned out my liver was a bit unhappy. Two liver values were elevated, and my ALT was 4.5x the high end. Since we cannot be sure about direct injury vs reaction to bacterial death, the recommendation was to decrease my rifampin dose by 50% immediately with recheck LFT (liver function tests) in 3-4 weeks. I've been on a plethora of liver protectants like NAC, Milk thistle, liposomal glutathione, antioxidants, etc so there was no change there. It was disappointing. The day I was planning to double the dose we ended up decreasing it by half. But I am thankful Dr. Barter is cautious and understand the process!
About 24 hours after the dose decrease, I had an abrupt increase in head pain, TMJ pain, facial pain and eye pain.
I am talking some of THE worst migraines EVER. I spent over a week with hot packs, cold packs, moist packs, head in a pillow and Pancake by my side. What does this all mean…basically the dose decrease was allowing the bacteria to get a hand-up ie) it took advantage of the decrease in antimicrobial opposition. One positive, however, has been the reciprocal increase in energy (because the lower dose of rifampin is not metabolizing my cortisol and hormones as quickly).
Recheck metabolic panel was on Friday March 5th. Sadly, my values were better but still too high and in a range Dr. Barter was uncomfortable with. She advised that her patients experience elevations in LFT universally upon initiation of Rifampin but seldom does she see elevations matching my levels. After careful consideration and because Rifampin is one of the most effective drugs in treating Bartonellosis, Dr. Barter elected to continue but at 3x/week dosing. Based on my clinical picture, we are working under the assumption that this is related to a large bacterial load within the liver vasculature (remember bartonella infects endothelial tissues). The caveat being necessary close monitoring of LFTs (recheck q3-4wks). If values are worsening, then we will have to discontinue for short period. If they stabilize then we can continue with scheduled dose advancements. Resveratrol was also added as a complement to my current liver protection. This felt like such a mental win for me! The thought of having to discontinue Rifampin was devastating to my mental health. I trust Dr. Barter’s clinical instincts and will do whatever she recommends.
Little bit of a rocky start to Phase 3 but believe me when I tell you it is all welcomed. It's a process but finally getting to rifampin feels so damn rewarding.
Here is where I am at:
Rifampin is at 150mg three times a week. Bactrim and Clarithromycin remain at full dose and are well tolerated.
Recheck 5 (12/31/2020):
Other pertinent changes during recheck 5 included an increase in my hormone replacement therapy (testosterone and progesterone). My blood work also revealed a new eosinophilia and basophilia. This can be elevated in patients with Mast Cell Activation Syndrome or parasitic infections. Given my occupational exposure to parasites, we elected to start a course of ivermectin and albendazole. Interestingly, the Ivermectin has many other properties, one being antiviral. Since I am high risk and unable to be vaccinated for CV19 while actively ill, Dr. Barter placed me on a prophylactic regiment using Ivermectin once weekly. It is a protocol outlined by the Front Line Covid-19 Critical Care Alliance. There are many drugs out there with a high margin of safety that have multiple uses beyond its initial purpose. Ivermectin is one of them and is still being evaluated for its prophylactic potential. Like most CV19 research, the depth of studies are just beginning and not comprehensive.
Another recommendation was a trial course of peptide therapy with NAD+. This was to address my mitochondrial dysfunction, exertional fatigue and mental confusion. It was a twice weekly injection, and the response was incredible! I absolutely felt more dialed in and more mentally focused. My energy did not last any longer than usual, but everything was more concentrated, detailed, and clear. I could even walk up the stairs without having to take a break.
Unfortunately, I started to develop a little inflammation (histamine reaction) at the injection site. This is not uncommon with MCAS patients, but with each dose this reaction became a tad more concerning. I became consumed with worry that this small reaction might subsequently trigger an exacerbation of my MCAS and decided to scrap it. Don’t miss the injection process though. Even though it was an insulin syringe (which means a teeny tiny needle), my pain perception is- and has been- heightened for years now. My skin is the most sensitive of all areas and the injections really hurt. To any Diabetics out there, you are champions!!
There was a funny story in this though: After your first dose of NAD+, your body can develop symptoms similar to a panic attack. The NAD+ causes abrupt vasodilation. This resolves in 20 minutes, requiring no intervention, just deep breathing. Well, (apparently) I have never experienced all a proper panic attack has to offer, or anything like it for that matter. I guess you would expect that out an ER doctor, haha. What good would we be if we panicked under pressure! But let me tell you, within a minute of my initial subcutaneous injection I started sweating profusely. I’m talking uncontrollable sweating. My heart rate climbed, my body felt flush, and my head, dizzy. I was expecting tightness in the chest, or difficulty breathing…nope, my breathing was fine! What is this?? So naturally I write my doctor explaining my response, curious if there were any concerns…and in actuality, my email had basically defined a standard-variety panic attack straight out of Webster! Textbook definition. We all got a good laugh out of it, especially since she took time during our last recheck to warn of this!
There were many other changes too. Here is a snap shot for those who are interested:
Symptom Chart from Recheck 5 (12/31/2020).
It is March now, so this symptom chart is a bit outdated. The majority holds true.
Since recheck 5, the appalling metallic taste in my mouth is FINALLY gone. This disgusting taste would happen shortly after each dose of Clarithromycin. I would gag, it was atrocious...so offensive it woke me up at night and I even had a spit cup on my nightstand!
After trying the NAD+, I was able to do 10 bicep curls with a 5-pound weight on each arm…once. Being able to do anything in a repetitious manner has been impossible. It felt amazing!
Daily rifampin resulted in a drastic decrease in my monthly headaches (from ~20/month to ~10/month). This excludes recent changes in dose
My bursitis is much improved over the greater trochanteric region. I can now lay on my left or right side for multiple minutes…nothing to long BUT it sure feels liberating (ESPECIALLY with my preference for side sleeping). Other areas of bursitis seem better too
My quadratus lumborus spasms, sleep quality, extrinsic dental staining and hypermobility (especially hands and elbow) are improved
Bartonellosis has made me the highest of high maintenance.
My neck is 38 going on 80…Having an undifferentiated connective tissue disorder and a disease with a propensity to degrade collagen are both exploiting my age. These are deep wrinkles AND their multiplying. Pre-illness face regiment included dove soap and oil of Olay, now I am on more creams than I can count. It's helped my facial skin tone and brightness but the neck is still a process, meh.
My body is unrecognizable. Almost all muscle mass has been lost and replace with squish.. My skin has different areas of hyper and hypopigmentation, discoloration, mottling, cherry angiomas, scarring and horizontal striations that now look like stretch marks (but they are not stretch marks- these are Bartonella Associated Cutaneous Lesions secondary to connective