I’ve been in Lyme treatment now for about 2 1/2 years. When I first started I was so motivated because I FINALLY had a diagnosis after years of mystery. I was reading every book my doctors recommended about Lyme. I had my A+ overachiever hat on and I was determined to be the BEST PATIENT EVER.
But along the way I started to lose my steam, get overwhelmed, depressed at the lack of improvement, and stuck in the weeds; still in it, but feeling like I’m barely moving at all.
My treatment started with a Naturopath at first. I had done a bit of research after getting my Lyme diagnosis and decided that I wanted to try holistic treatments first, and then move onto more western medicine if that didn’t work out. My Naturopath started me on a bunch of supplements, I had about 10 different things to take at multiple times of the day. She also started me on a very limited “Lyme diet”, which removed foods known to cause inflammation and irritation, and had me eat as clean as possible, meaning no chemicals or processed foods.
I followed the directions perfectly, but I suddenly dropped 20 pounds in one month (I went from 135 to 115) and was feeling my symptoms changing and getting worse. So we changed things up, I had to take a bunch of blood, saliva, breath, vision and stool tests, and found out my stomach was really torn up with other bacteria overgrowth, and mold. So we started focusing heavily on healing my gut. After 3 months I was still having these morphing and worsening symptoms, and the Naturopath said I was more severe of a case than she has experience with, and recommended I find a more experienced Lyme Specialist. I felt a little defeated, but was still gung-ho for what this next phase would bring.
My friend knew someone who was a Lyme success story, and her doctor happened to be one of the more well known specialists in the industry. I called her up and felt so lucky that she accepted me as a patient. And that’s when the REAL work started.
When I look back at the last two years with her it’s a flurry of countless pills and supplements, tests and procedures, offices, hospitals, ER visits and medical buildings, dietary restrictions, antibiotics, IV antibiotics, stubborn symptoms, changing symptoms, books and articles, additional specialists, and appointment after appointment after appointment. I felt like I was barely staying afloat and was drowning in all the information I was given from each appointment. Medications started blurring together and it felt like I had swallowed at least one of every pill known to man at least a hundred times. My Lyme Specialist’s appointments were usually at least 3 hours of non-stop information, changes to my treatment, theories and explanations with a fresh new treatment plan at the end to take home and follow until the next appointment.
At first I did my best trying to keep track of everything. I created this blog first as just a way for me to organize all my notes, complex medication instructions, side effects and to track my symptoms. Everyday I would wake up determined to be a perfect little patient. But then days started blurring together. I started to get depressed at how long I felt removed from life, how much I missed my abilities, and how little I was improving, especially on days when it felt like I was getting worse.
My medical team, that had started with just my Psychiatrist and Lyme Specialist, kept getting larger. I also had a General Physician, Neurologist, Chinese Herbalist, Acupuncturist, At-Home Nurse while on IV antibiotics, Therapist, Pain Specialist, and Pain Psychologist. Last month I added a second Lyme Naturopath who will be working alongside my Lyme Specialist, and this month I’ll be adding a Physical Therapist.
After every appointment with my Lyme Specialist, I would have what is called a “Patient Plan”, which is a very long, very dense and complex multi-page instruction on what new things to take, what things to change, what to read, what tests to get done, and what additional doctors or specialists I’ve been referred to. In the beginning I was doing every thing on the list, but then I felt my grip on it all start to slip away.
I would be so motivated in the doctor appointment, and so ready to do 100% of my patient plan perfectly, but then I’d get home and all the adrenaline I felt during the appointment would drain from me, and I would feel so completely overwhelmed, confused, and forgetful. I would get so frustrated because I felt like all I was being told to do was to keep taking more things, to keep adding more pills and supplements and liquids to swallow down 5, 6, 7+ times a day.
I started to gag thinking about all the things I had to swallow while feeling nauseous, and I was losing trust that what I was being told to do was the right thing for my treatment. I was taking so many meds and supplements I couldn’t tell what was working and not working, it just felt like nothing was changing, for months and months and months. It’s also very hard to distinguish between side effects from meds, which are bad for treatment, and a herxing reaction, which is good for treatment and very important because it means the bacteria is reacting to something, which is a sign to keep taking it.
So, my dedication to each new patient plan lessened, until I was only doing a few things on the list and felt completely unmotivated and unable to do the rest. Feeling so depressed and so overwhelmed, it would feel like a fight each day just to get myself to do what my patient plan told me to. And with each passing month of not feeling better, or feeling a little better but not enough to get me back to my regular, pre-Lyme life, I just started to lose hope that anything would ever work on me.
After the tough 6 months of IV antibiotics I was on last year, I took 6 months off of the literal BUCKET of meds and supplements I was taking so I could see where my baseline was – how my body felt on its own – because I knew there was no way everything I was taking was necessary. There was just too much of it and I wasn’t seeing obvious improvements, so why keep taking things if they’re not helping?!
During that time off I found that my body did feel a little better than when I started my treatment years ago. My cognitive functioning had cleared up from the IV antibiotics, and I had some symptoms go away and some happen a little less frequently, but I was still disabled, I was still severely limited, I was still very sick, and I was still in pain. But at least there was some improvement, and a break from pouring all that stuff down my throat. A couple months ago I’ve slowly started on new supplements and medications my doctors want me on, so my daily pill organizer is starting to fill up again.
And that brings me to today. Today, like most days, I am on the couch feeling ashamed that I’m not doing more with my treatment, and feeling hopeful that tomorrow I’ll find more motivation to take things up a notch. I have a little angel on one shoulder telling me I’m doing a great job with what I’m doing, reminding me that I am doing a lot and to not feel ashamed that I can’t do it all, and I have a little devil on the other shoulder telling me I’m to blame for not feeling better – that I should be working harder, that there are so many things I haven’t done in my last handful of patient plans. There are new physical therapy appointments to make, there are chronic pain group sessions to attend, there are more medications to try, and I’m to blame for being sick because I’m not a perfect patient anymore and I’d be so much further along in my treatment (maybe I’d even be better and working by now!) if I had been less lazy about it.
I struggle listening to both shoulders while trying to find my center, which is to tell myself there is no way I could do 100% of everything in my patient plans 100% of the time, that I am still doing so much of it, all while still being sick and limited, and that shaming myself because I’m overwhelmed by something that is VERY OVERWHELMING isn’t helpful. But because there is always something more I can be doing, I am always living with the guilt/motivation to keep pushing myself. My mind feels like a volleyball that’s being tossed between the angel and the devil, while I sit on the couch and watch the days blend together, waiting – hoping – for something to improve. ❤