And so it begins…

Best laid plans…a phrase I feel myself saying over and over again…a phrase that sums up my complete and total lack of accomplishment in so many areas of my life right now. I am supposed to be much further along in relaunching the gourmet food business I bought last year. I’m supposed to be further into my treatment for Lyme Disease (and the other fun illnesses that go along with it). I knew that traveling to San Francisco in January would be worth it (I mean, how can you pass up The Fancy Food Show!), but also set me back. I may have underestimated just quite how much. While technically, the trip was only nine days, the added prep I needed before the trip, along with the downtime needed afterwards, pretty much wiped the first month of 2019 off the calendar.

Then the short month of February came (and went), and despite working late into the night on several occasions, it took me much longer to finish the company’s new website than I had hoped. Relaunching and expanding a company while coming to terms with a newly diagnosed chronic illness is a lot for anyone to handle, but being textbook Type A makes it just that much more of a challenge. I’ve mentioned that I am a Virgo to a “T” and a perfectionist to a fault, so my idea of “good enough” usually means I have overthought, over-researched, and at times, over-engineered whatever it is that I am working on. I know I need to better prioritize where to spend the little energy I have, but I also know that without the mental stimulation of work, I would have already gone stir-crazy with boredom. I’m definitely still in the learning stage here. How do you divvy it all out? How do you prioritize what you have to do to stay financially sound and mentally challenged, while at the same time mending your broken body?

On top of all this, I have completely shirked my duties as a new blogger. While I certainly recognize this is not my number one priority, I made a commitment to keep up on this blog and gosh darn it, I want to honor that commitment, if for no other reason than the purely selfish fact that writing is actually very therapeutic for me. Granted, I always thought I would hone my writing skills on a food blog, but again…best laid plans. Someday.

And lastly, I had every intention of completing Parts 2 and 3 of my “new normal” portion of this story weeks ago, primarily to explain how my multiple tick-borne diseases, coinfections, and related illnesses manifested themselves over time. It was my plan to write Part 2 as my next blog. However, once I started my first treatment protocol on February 1st, it seemed that all of my grand plans for life in general pretty much went out the window. I’m quickly realizing that it doesn’t matter what I have planned, ultimately, this disease plans it for me. So instead of writing Part 2 this time around, I thought I would chat a little about how this first Lyme Disease Protocol is going.

Today is day 100. I can’t believe I started treatment 100 days ago. If you want to really experience how fast time flies, start a daily journal. Every day, I write down how many days into treatment I am, what meds I took, my pain and weakness levels, what I ate, and other details about how I am feeling. I can’t believe it’s been 100 days.

Unfortunately, there is no one-size-fits-all version of treating Chronic Lyme Disease and its coinfections, and everyone’s experience is different. This is part of the reason these tick-borne diseases are so complicated to treat, as there is no silver bullet. I would go as far as to say there may not be two people in the world who have followed the exact same treatment protocol and have had the exact same results. So, knowing where to start, how you should feel, or where to go next is pretty much impossible. What I do know is that I’m not a doctor, I am not giving medical advice, I don’t pretend to know what is best for anyone (even myself), and this blog is merely to share my personal experience through this deeply personal journey. Ok, now that the legalese is out of the way…

You may be wondering why I go out of my way to constantly use the phrase treatment “protocol”, instead of “treatment”. The word treatment alone does not explain how one fights this disease. The word treatment has a certain connotation. It implies that there is one magic pill, surgery, procedure, medicine, etc. that treats a condition or disease. However, with Lyme, unless you know you were bitten by a tick and/or notice a bulls-eye rash, find a doctor who will test you and/or the tick, find a doctor that will make a clinical diagnosis even if you don’t test positive or have the rash (all with in the first few weeks of infection), and you take a round of antibiotics, and those antibiotics work, and your spirochetes (Lyme bacteria) don’t come back out of hiding and replicate after that early treatment, and…and…and… Unless you are lucky enough to have all the stars align, there is no single treatment for what these tick-borne diseases do to your body once they are too late to eradicate with just a quick course of Doxycycline.

This is why you hear Chronic Lyme patients talk about treatment protocols, which are basically a grouping of prescription medicines (typically antibiotics, anti-fungals, and anti-parasitics), herbal treatments, homeopathics, medical procedures, and more. These protocols attempt to coax the bacteria out of hiding, kill the bacteria where possible, repair the body’s immune system so that it can help kill more of the bacteria, manage the sometimes debilitating Herxheimer reactions (or herxing), and hopefully, eventually make the patient feel a little better; or at the very least, slow the internal damage these bacteria have unleashed on your body. I have no idea how many treatment protocols there are, but it seems that every book or article I read, documentary I watch, or person I speak with, talks about the host of different protocols they have tried, most of which don’t ultimately work. At best they place a person in some sort of remission for a few months, or years, if you are really lucky. And equally as frustrating, the protocols themselves last from several months to several years, meaning you don’t know if any of it is helping for several months to several years. The common thread… patience, patience, patience.

So , with the legalese and boring definition of “protocol” out of the way (thanks for sticking with me!), let’s get to the meat of this story. I think in some ways, my first 3+ months have been exactly what I expected, while at the same time, nothing like I expected all wrapped up into one (clear as mud, right?). I knew it would be hard, I knew I would feel like crap, I knew I would spend a lot of time in bed, and spend a lot of money; and sadly, I also knew I wouldn’t start feeling better any time soon. At least that’s what all the blogs, books, and online groups had to say. All in all, that is a pretty accurate high level summary. However, it’s harder to find descriptive accounts of the day-to-day, not so significant, but oh-so-debilitating symptoms that constantly come and go without warning. Or, the outrageous number of supplements and pills you actually are supposed to take. Or the toll that the enormity of it all takes on your mental health, no matter how positive and happy you are as a person. Or the insane diet regimens you are supposed to follow. Or the very difficult job of explaining any of this to anyone before you have bored them to tears. Or…the numerous other things you find out are wrong with you along the way. Bottom line, Lyme disease and its coinfections wreak absolute havoc on every part of your body, and every aspect of your life as you knew it.

I feel like a yo-yo. I have worked my way up to 75% of one antibiotic and 50% of the other, but because of how harsh these medicines are on your stomach, there’s a constant battle to determine how many I can handle on a day-to-day basis. I was surprised that the very first side effects I experienced from the antibiotics ended up being a worsening of the symptoms I experienced during my first flare in 2002, i.e. heavy and weak limbs, severe leg pain, extreme dizziness and brain fog, shortness of breath/air hunger making it hard to carry on a conversation, and barely having the strength to simply walk across a room. Upon the addition of another medication about a week after starting the doxy, I noticed my shoulders stiffened, arms weakened, and fingers curled to the point that I couldn’t pick anything up. I can only sum up that overall experience as feeling like I had partial paralysis of my right arm/hand. Needless to say, I stopped that medication immediately!

Most other symptoms have just been the usual, but on steroids…teeth that hurt so bad you can’t chew anything, skin so sensitive I cringe with the softest touch (or shower), night sweats that soak the bed, and chills that leave me shivering with my down comforter, a quilt, and my new weighted blanket (which I LOVE!). The one symptom that has surprised me the most is the severe nausea that comes and goes in waves, but knocks me off my feet when it’s at its worst. And then there are the neurological symptoms, and these are the hardest to explain. Ever since my illness started, I have been extremely sensitive to light and sound. This sensitivity is now on steroids. I feel like I have an antennae attached to me, as the electrical currents send buzzing, talking, and musical sounds to my ears. While I used to find it hard to walk into a big box store because of the fluorescents, now just about any bright lights bring on instant vertigo.

While I am very used to not knowing how I am going to feel from day-to-day, I think the ups and downs are much more pronounced than I’m used to. There have been a handful of days along the way that I’ve had a hint of less pain, and I think hey, maybe I’m already responding well to this very early stage of treatment. Then I realize I should have known better. The severe nausea reappears (even on prescription anti-nausea/vomiting meds), the excruciating pain rears its ugly head, the brain fog gets in the way of simple conversations, or I am so lethargic that I can barely keep my eyes open.

It’s not unusual for me to be in severe pain, and it’s not unusual for me to be bedridden for days at a time. I have been more open about this in recent years, and I often get the question, “What kind of pain do you have?”. The hard part about this question is that it changes from day to day, body part to body part, internal to external, and so on. So, I thought it might be helpful to give a couple of examples. First, imagine laying in bed and the nerve endings on the back half of your body feel like they are all on fire, then imagine that your bones ache to the core (like the very worst flu you could ever conjure up in your head), then sharp spikes are being driven into points of your calves and thighs at random locations and intervals. On these days, I typically spend my day in the fetal position in bed, pain meds not doing a gosh darn thing. Or, like the other night, I woke up screaming (scaring the crap out of my husband) because I couldn’t straighten my left leg due to the sharp stabbing pain. Or, like the last three days, my lower back and hips have felt like someone punched me all over, to the point that Joel even noticed the swelling in that area as he so kindly massaged my back. So, when these things happen, I play the usual game of trying to figure out what I did the day or two before that may have caused this particular day’s horribleness. It doesn’t take much; just a drive into the city for a doctor’s appt., or an especially long work day, or spending just a little too much time in the kitchen, or even trying a new stretch that should have brought relief instead. I stopped trying to connect cause and effect years ago, because it seemed to be a useless endeavor. Who the heck knows why one day is bad, but the next day is horrible! And trying to constantly tie these things together can drive a person mad. It’s a giant puzzle where the pieces just never fit.

While not physically painful, managing the actual medications for this disease is nearly impossible. In fact, I would love to see if there is anyone out there that has actually done it successfully. Despite the daily brain fog, I consider myself a fairly competent person, but oh my gosh – the medications! So many of them are to be taken 2 hours before eating, or 4-6 hours after you take this other med, or 30 minutes after eating, or only with food. I think you get the drift. I don’t believe there are enough hours in the day to actually make the perfect pill schedule work. With the help of my husband, I took on the daunting task over the past several weeks of creating a spreadsheet (nerd alert!) to track all of the medications I am supposed to be taking as part of this protocol, including what they are for, cost, dosing info, side-effects, drug-interactions, etc.

This is mind blowing. I don’t even know if you will believe me. I tallied the score…drum roll, please…as part of my current protocol (which includes a few medications and supplements that I was on prior to this particular diagnosis), between the pills, tinctures, powders, droppers, liquids, etc., I am supposed to be ingesting 213 doses of these items per day. Yes, 200+ pills per day, at a cost of $122 per day. Yes, $122 per day. So, before any doctor visit costs, procedures, tests, or other treatments, this is an out of pocket cost of close to $45,000 annually. I don’t mean to overshare the financials, but people need to know that this is a disease affecting a minimum of 300k-400k people per year just in the US, and for those that aren’t treated and cured immediately, this is the cost of their future.

And then there is the isolation. Thankfully, I have a beautiful view out my window and I love my home. That’s a good thing, especially considering I have only left my house a handful of times in the last several months. Thankfully, I have some pretty amazing friends and family that have come out to visit and stay the night when Joel is out of town. Thankfully, I have a business I am passionate about and more work than I can handle, which keeps my mind occupied. My doctor told me this week that it’s in my best interest to stay away from the general public, because, in her words “If you get sick, you’re done.” For a very social person, that’s a hard one to swallow, but thankfully, there are people around me offering incredible support.

It bothers me that I have become such a complainer. When people used to ask me “How are you feeling?”, I would always just say “fine”, “good”, or even “hanging in there”. However, now that people know about this disease, I find myself giving more details and probably oversharing (case in point…this blog). However, I really want people to understand that invisible illness is not only devastating to one’s health, but also their person and their pride, their livelihood, their feeling of contribution, their feeling of what they bring to the table. Your health can be taken away in an instant, in a way that is so totally out of your control. And no matter how badly you want to do the same things, live the same life, get back to who you were, it may not be that easy, or even possible. After being told that it will take 3-5 years to get this under control, after reading about so many people who have attempted unsuccessful experimental treatments all over the world, and after hearing so many first-hand accounts of people giving up their Lyme protocols altogether, it makes it that much harder to see any light at the end of the tunnel. Patience, patience, patience…