Given a recent doctors appointment I had with the Lyme specialist I work with, I wanted to share a more in depth update about what is going on with my health these days. I’m wrapping up my first two week pulse of my second round of Babesia treatment, and I am majorly looking forward to my next two weeks sans antibiotics. If you haven’t read about my Lyme disease diagnosis you can read more about how that all went down here.
a lesson in aparigraha
Going into the phone call I expected to hear that I’d be starting my last round of treatment to tackle Bartonella, but instead was told I still have months to go with my Babesia protocol. Not only that, but she’s kicking it up a notch and throwing yet another antibiotic into the mix. I’ve done almost four months of Babesia treatment at this point, and now I have another four more to go before starting a Bartonella focused protocol. I am reluctantly taking a daily nerve pain medication, four different antibiotics, an anti-fungal, and an anti-malaria medication; as well as roughly 45 herbs and supplements each day. Keeping track of my protocol and maintaining a rigid detox regimen is a hefty load, and I’m exhausted. Not to mention none of this sits well with the aspiring functional nutritionist in me.
I thought Babesia was going to be behind me, and I’d hoped to be done with antibiotics completely by mid-summer. I feel like I am assaulting my body every day I continue to take my prescribed medications, as the side effects of all these pharmaceuticals are almost worse than the illnesses they are intending to fight. My gut is really going through the wringer, and once all this Lyme stuff is behind me healing my intestinal dysbiosis and SIBO will likely take another six months at least. Through this process I’ve done my best not to set expectations for myself, but I’m coming to realize that I did have a timeline in mind for my healing process and it just got completely thrown out the window. I suppose that’s my cue to revisit the practice of Aparigraha — the Sanskrit term for non-attachment.
mast cell activation syndrome
I also recently found out that I tested positive for Mast Cell Activation Syndrome (MCAS), and I’ll explain what this is in a bit more detail below. The diagnoses just keep on coming, and the confounding factors of knowing which came first and which should take priority in regards to treatment is a lost cause. It’s easy to say that anything in life has it’s ups and downs, it’s ebbs and flows, it’s trials and triumphs. It’s easy to say all these things after the fact, but when you find yourself in the midst of a low it’s much less easy to brush your experience off with one of these vague expressions. In times like these where I feel completely out of control I’d typically turn to some sort of movement (i.e. yoga, running, or hiking) as an outlet, but a few flows of Suryanamaskar A and B are about all my achey joints can tolerate right now; and no, that’s not nearly enough to channel my frustrated energy.
So what is mast cell activation? Mast cells are present in most tissues throughout the human body, especially connective tissues, skin, the intestinal lining, the cardiovascular system, the nervous system, and our reproductive organs. When our body is exposed to something it deems as a threat (i.e. certain foods, exertion, chemicals, fragrances, medication, trauma, stress, etc.) it releases chemical mediators, such as a histamine. In a healthy individual, histamine secretion is part of the body’s allergic response to fight injury and infection. However, in people with MCAS this histamine response basically goes haywire, and overactive mast cells can cause a wide range of debilitating symptoms. Essentially, people with MCAS have mast cells that don’t know when to turn off, resulting in the constant misfiring of potent chemical mediators effecting several different body systems. A short list of symptoms include rashes, digestive problems, chronic pain, heart palpitations and shortness of breath, brain fog, low blood pressure, fatigue, and more. MCAS is a relatively new diagnosis in the medical field, and many doctors don’t know what it is, don’t acknowledge it, and don’t know how to test for it or treat it. In the past, mast cell responses were thought to be directly correlated to allergic reactions and anaphylaxis, but science is now proving that mast cells do play a role in immune activation, autoimmunity, and other disorders. Welcome to the era of chronic disease folks.
internal conflict + fissures
Are my SIBO symptoms actually MCAS symptoms? Or are they all still a result of Lyme and co-infections? Are any of my symptoms even a result of Lyme disease anymore? Questions like these race through my head dozens of times per day. I’m doing my utmost best to tune into my body’s cues and listen to my intuition on how to go forward with treatment, but man am I perplexed. The newest uncertainty that’s presented itself — the icing on the cake — is a recurrent fissure problem. In short a fissure is a very small tear in the lining of the anus, and the most notorious symptom is feeling like you are passing shattered glass with each bowel movement. It is as horrifyingly excruciating as it sounds, and the fact that I am having them recurrently is definitely unsettling and potentially indicative of yet another underlying diagnosis waiting to happen. Sigh.
I’m at a point where I am ready to take extreme measures to make greater strides in healing and to give my system a break. The level of inflammation and irritation in my body is brutal to deal with, and the business major in me is wondering when my antibiotic treatment will reach a point of diminishing marginal return — if it hasn’t already. I’ve prospected the idea of a medically supervised two week water fast, the physician’s elemental diet (liquid medical diet), and things of the like. But again these are extreme measures, and I’m working on exhausting all other options first. Unfortunately it seems the options are running out, and so is my patience [read: sanity].
paving a new path
My diet is the only variable in all of this that I have control over, which has led me to pursue a career path of becoming a Nutritional Therapy Practitioner (NTP). I graduated undergrad with a degree in Finance, so this is a major (but needed) shift in directions for me. Come the end of October I will be done with my studies and will be launching a private nutrition practice offering a variety of health consulting services. Though my Babesia protocol is kicking my butt right now, having something to focus on that I am passionate about is definitely doing my mind a whole lot of good. I am over the moon ecstatic to put my experience with chronic illness to good use by helping others use functional nutrition as a healing mechanism and to find balance in their body again.
I’m learning new ways to find emotional and energetic outlets; ceramics, recipe development, and tug-of-war matches with my new puppy, Bowie, to name a few. I’m not sure any of these will ever match the cathartic effect of a long run or a sweaty yoga class; but I’m learning in the process and that’s what counts. Lyme disease, SIBO, MCAS, fissures, and all of the things I’m dealing with will be behind me one day. That day might not be sometime this summer, but it will surely come. Until then, you can find me with my head in the books, doing things in the kitchen, and exploring the wondrous PNW with my two favorite companions, Neel and Bowie.