- Joy Stevens ND
Reflections on a Decade of Living with Lyme
Updated: Jan 17, 2020
Yesterday was my birthday. I like that my birthday falls early in the year and this year it also falls early in a brand new decade. Significant in particular is this birthday marks the 10th anniversary of a very dark time in my life and has resulted in much reflection on the past decade. Bear with me as this is likely to be the rawest post I will ever write. Caution, strong language ahead.
It was a year ago yesterday I took up skiing after a ~33 year hiatus. It was scary and I wondered if I could do it, but it was something I was motivated to try. I had been working out with a personal trainer for six weeks in preparation for that day. I started with a private lesson. I figured if I was going to really give this an honest try, technique would be paramount and I needed to begin developing the correct muscle memory straight away. Fortunately, by the end of the day I had learned my fears were unfounded but clearly there was much work in my future.
Four weeks ago, my skiing had finally transitioned from “this is all work” to “this is fun sometimes.” I was still working on the lessons my instructor had given me last year, but having discovered I could ski from the top of the mountain to the base lodge non-stop, I was ready for a new challenge. How interesting after having that realization, my next ride up the mountain was with a member of the local ski club. He piqued my interest and when we got off the lift, he introduced me to the coach. The next weekend I practiced with them for the first time. Within days I had joined the club and bought new skis more appropriate for what we were doing. Two weeks later, this past Friday and the day before my birthday, I raced in my first Giant Slalom.
OK, sure, it’s beer league skiing, but it is so much fun and I placed in a respectful middle of the pack. But even more fun than racing is the training. How this little podunk hill in the middle of nowhere has attracted the caliber of coaches it has is beyond me. And the club members I train with are good as gold. How I have had the fortune to end up amongst them still has my head spinning. My skills leap forward each week, but more importantly, so does my soul. This is truly the most fun I have had in decades. I can neither write nor say that without tearing up for this birthday as well as the month before it and the several months after it marks a decade since my world was turned upside down and inside out.
“You have MS,” he said as he turned to hand me a tissue. Confused, I thought, “I didn’t sneeze.” It was only later that I realized he expected me to cry and that some part of him took a sick pleasure in that.
On December 5, 2009, I noticed my left eye would twitch whenever I looked to the left. Over the next couple of days, the twitching worsened and I finally went to the local walk in clinic. The physician’s assistant examined me and with a funny look on her face, immediately referred me to a neurologist. I found it a bit odd that I wasn’t given any indication of what might be wrong, but I didn’t think too much about it at the time. I just assumed whatever it was couldn’t be all that serious. It was just a twitch in my eye after all. I now understand that is how they handle a situation they believe to be very bad. No discussion, no kiss goodbye, just a funny face and a referral.
At the neurologist’s office, I was put in the not so capable hands of a nurse practitioner (NP). After a quick examination, he ordered a brain MRI. As this particular physician owns his own MRI machine, it was just a matter of going to the trailer out back of the clinic, changing into a gown, being injected with a substance I was assured was perfectly safe (it’s not), laying very still for what seemed like hours in a noisy, claustrophobic contraption, then going right back into the building for the results. The NP reviewed the MRI (no need for a radiologist in this office), saw lesions, and diagnosed me with “probable left optic neuritis, likely representing a primary CNS demyelination disorder.” In other words, I had multiple sclerosis (MS) because according to him the “only reason an enhanced MRI will light up is due to MS.” To alleviate the eye twitch, he started me on IV Solu-Medrol steroids right away followed by six days of predisone to taper off. Three infusions later, the twitching was gone, and I felt great.
A subsequent MRI later that week showed no lesions on the cervical spine. Well now, there’s good news. It was at this point that I had my first meeting with the neurologist, if one can call five minutes a meeting. He inquired whether I had HIV or syphilis. Apparently my answer of “no” was sufficient although I have never been tested for either so how could I have really known? More importantly, how could he have ruled these out simply based upon my answer? Satisfied with his NP’s MS diagnosis, I was sent on my way with a “call us if you have any more problems.”
A few days later, on December 19th, I finally had time to sit down and start researching MS. I learned it wasn’t a “call us with any questions” kind of disease. I learned about disease modifying drugs which are used to help stall the progression of the disease. To say that I was shocked to learn about these and that my neurologist had not so much as mentioned them to me is an understatement. I immediately started looking for another doctor and found one at the large regional MS center in Denver and scheduled an appointment for late January.
Meanwhile, over the Christmas break, I developed new symptoms. In particular, the bottoms of my feet began to hurt. I felt as though I was walking on rocks and I took to wearing Crocs because they were the only shoes I could tolerate. I was getting progressively more tired. One day my left arm was resting in my lap and I needed it on my desk in order to type. I looked at it and realized I would have to lift it up with my right hand if it was going to get there as I didn’t have the energy in that arm for it to lift itself. Other days I would look from the door of my office building across the small parking lot and wonder if I would have the energy to walk to my truck parked only a few spots away. Most days I struggled to wash my hair because I didn’t have the energy to hold my arms up that long and I gave up drying my hair because holding the blower was simply too much. Parts of my body were numb, others in constant pain, and my muscles would cramp violently for 10 minutes at a time making anything other than writhing on the floor impossible. So much for the steroids keeping symptoms at bay as I had been led to believe. I felt like I had been doused in gasoline, lit on fire, and thrown off a cliff.
In early January, I purchased MS for Dummies. I devoured it, studied MS on the Internet, and did as much as I could to prepare for my appointment with the MS “expert” at the end of the month. I obtained copies of my MRI and records from the neurologist.
This new neurologist, the “expert,” reviewed my records. I had prepared a calendar of my symptoms, showing how I had progressively gotten sicker and sicker over the past month. He said he didn’t need to see that. I had prepared a list of questions for him, the first one being, “Have you been able to rule out every other cause of my symptoms?” He replied, “Yes, you have MS.” He provided information on the three disease modifying drugs then used to treat MS, telling me to choose one. Clearly, I would have no help from him in making that decision. He finished by advising me to exercise and keep my brain active in order to build new pathways around the lesions. He suggested I learn to play the piano.
Meanwhile, my symptoms steadily worsened. The bottoms of my feet continued to decline, the fatigue was growing, and the numbness and pain spreading. I even ended up in the dentist’s chair, certain I had a cavity, yet they could find nothing amiss. Trying to be proactive about my disease, I had my eyes checked. I told the optometrist I had been diagnosed with optic neuritis and MS and asked if he had seen any indication of that. Confused, he looked again and replied “no.”
By this time, the disease modifying drugs had arrived. Of the three available, all were injectable and I had chosen Betaseron which required I give myself an injection every other day. Putting my phobia of needles aside, I was anxious to start this therapy and hopefully stop what seemed to be out of control progression, I learned to give myself injections with the help of a nurse on the other end of the telephone. It was late at night, it was dark outside, and I was alone in my living room, as alone as anyone should ever be.
I gave myself the injections as scheduled, rotating between eight different sites on my body. Despite strictly following the directions, the injections left me covered in bruises. And worse, I wasn’t feeling any better. I was still falling off the cliff, wondering when and where I would find bottom and what I would do when I got there. Calls to the “expert” were met with an extreme lack of compassion. If one could hear the shrug of shoulders, I’m sure I would have. I felt totally abandoned. “You have MS. We don’t know what causes it, we don’t know what to do for it, fuck you, have a nice life.”
Then on May 1, 2010, I was at my computer reading about the local MS walk in my hometown newspaper. The first blog comment on the story read:
Concerned4MT said on: May 1, 2010, 11:27 pm
I am so sorry for your diagnosis, and proud that you are doing something proactive for MS. I was told I had MS years ago also. I had the white spots on the MRI. And I had all the leg feelings and all. I was maybe lucky or unlucky, as I went further into studying what was wrong with me, and more extensive tests came up with Lyme disease. It might be worth your while to ck into that if you like. There are a lot of misdiagnosed cases of lyme in Montana, as dr.’s do not realized we do have it in Montana.Lyme mimic’s MS big time. Check out www.lymenet.com for a list of symptoms. Best wishes and stay positive!
(spelling and grammar mistakes in original)
I read that and thought “what the heck is Lyme and how the heck could it be mistaken for MS?”
I spent every spare moment of the next few days on the Internet researching Lyme disease. Fairly quickly, it was clear Lyme was certainly something that should have been considered. When I read author Amy Tan’s experience with Lyme disease, a light bulb went on in my head when she described her neck pain and repeated buying of new pillows. I had forgotten neck pain was why I had all the various pillows on my bed. I had always assumed it was the pillow causing me to wake with neck pain each morning and I was always trying a new one. That’s when I was certain I had Lyme disease and not MS. Now to find a doctor.
In my research, I quickly learned there were two Lyme camps – one that did not believe in chronic Lyme disease and one that did. Just as quickly, I knew I wanted a doctor from the latter camp. One of the articles I had read did a remarkable job of fairly presenting both perspectives and I liked what the physician who believed in chronic Lyme had to say. I tracked him down, getting lucky he was only a day’s drive away. He confirmed my self-diagnosis and started me on my healing journey.
The past couple of weeks I have been thinking a lot about how far I have come in the past decade. In thinking of those first two doctors, about the neurologist and the “expert.” I want to give those two a big ol’ FUCK YOU.
Fuck you to the neurologist. You told me the number of MS cases you were diagnosing each year and when I compared those numbers to the prevalence of MS, you were well outside the number of cases one could expect in an area, even when I factored in the entire population of the state and surrounding areas. It became clear you were operating an MS factory. You had your MRI machine out back of your clinic and were charging twice what either Billings or Denver charged. You passed your responsibilities off onto a sadistic nurse practitioner who was neither trained nor qualified to read or interpret MRIs and who got off on delivering bad news. The good people of Wyoming deserve better.
Fuck you to the “expert” in Denver and shame on you. I later learned you wrote a paper on Lyme disease, albeit not a very good one, yet when you had a case of Lyme sitting right in front of you, you couldn’t see it. In fact, you didn’t even consider it. You were so confident in the initial diagnosis that you couldn’t be bothered to put a fresh set of eyes on my case. That’s not how a second opinion is supposed to work. If you had, you would have noticed my initial symptoms didn’t match with optic neuritis. No wonder the optometrist didn’t see anything. I had a nystagmus. You would have realized the diagnosis of MS was based solely upon the MRI yet the diagnostic criteria for MS does not include MRI findings. Had you looked at my calendar of symptoms you would had seen how quickly I was deteriorating and tied it back to the steroid treatment. Steroids wipe out the immune system. Giving steroids to those with stealth infections is called a “steroid disaster.” Hell, you didn’t even know magnesium supplementation was a quick and easy fix for muscle cramps.
Do either of you have any idea what it is like to be robbed of hope? Do either of you understand that without hope, a patient has nothing? Nothing.
To be clear, I don’t limit the definition of “hope” to be for a cure. None of us get out of this world alive. “Hope” can be to find a healthcare provider who actually cares. “Hope” can be to find a physician with the intellectual curiosity to keep looking for ways to help. “Hope” can be to have the knowledge for a better exit from this life. “Hope” can be for so many things. That is why I chose the name “Everhope” for my clinic, because I know what it means to have no hope and be cast adrift by the very persons who are supposed to be helping and supporting you. Those two fuckers took that from me. They robbed me of hope and stole my soul.
Yet I am one of the fortunate ones. I discovered what was actually wrong with me fairly quickly and I found a physician who was able to start me on my healing journey. I never stopped studying my own illness, eventually moving beyond what that physician could provide and ended up in naturopathic medical school. This wasn’t a path I would have chosen on my own or even one I wanted to be on. I liked being an engineer. I really did and I still miss it. Yet it wasn’t until I embraced naturopathic medicine that my healing really began. And I knew I didn’t want anyone else to go through what I had gone through.
Sadly, many of my medical school instructors and supervisors were ignorant at best and antagonistic at worse to the idea of Lyme disease. I mean, heaven forbid a student know more than the teacher, right? One went so far as to refer to Lyme as a “cult” and refused to consider it in at least one patient who clearly needed a proper workup for Lyme. Oh, the ignorance surrounding this disease is vast. At least my classmates are aware of it as I did not keep quiet when incorrect information was disseminated by the staff.
As I look back over the past decade, I am drawn to the memories of early 2010. I was crashing. I was crashing big time. I was cast adrift. I didn’t understand what was happening to me but I knew if I continued on the trajectory the neurologist and the “expert” had placed me on, I wouldn’t survive it. I did estate planning but I had no other thoughts of the future because I didn’t know if there would be a future. MS is a debilitating illness often resulting in the loss of motor control. Many patients end up in a wheelchair, or worse.
So for me to be in the ski club, on a ski racing team, and reading books on how to “ski faster,” I am brought to tears every time I think about it. Where would I be had I not figured out what was really going on in my body? Would I even still be here? Skiing represents everything I almost lost due to the incompetence of those two men. (I tried to end that sentence with “doctors” or “physicians” but I just couldn’t bring myself to use two words I hold in high regard to describe them.) Skiing is the physical proof I have overcome much of the past decade. I am now in better shape and stronger than I have been in many, many years and my mental resolve has returned. There is something about pointing your skis downhill and going as fast as you can that changes a person. My chosen word for 2020 is “fearless.”
For all the hostility I still hold against those two, I am hoping by writing about them that the hostility grows fainter. I don’t want it to completely disappear as it helps to motivate me to care for my patients. I don’t claim to be perfect, or even close to it, but I know I far exceed the low bar they set for patient care. On the flip side, I am so thankful to the man who inspired me to resume skiing. Very much like how we fail to understand how an insignificant gesture to a stranger can make all the difference in their day, I know he doesn’t fully understand the impact he has had on my life even though I have tried to explain it. I only wish I could return the favor in kind. And of course I must thank my mother for standing by me through that shit show (until reading this she didn’t know how bad it was, no one did) and for providing the means to make this all possible.
I am truly the happiest I have been in a long time and having the most fun I have had in decades.
EDIT: I've knowingly been living with Lyme for a decade, but likely was infected ~50 years ago.