By the end of August 2002, about one month after my non-stop vertigo and vision problems began, it seemed I had somehow opened a Pandora’s Box of new symptoms. I continued to stumble my way through work, feeling like I was in a dream; or more accurately, a nightmare, as I struggled to make it through each passing day. Who was this person?
It was at this time that the infamous brain fog of so many autoimmune and chronic diseases began, and I started to feel disembodied from my physical self. This is such a hard thing to put into words, but in recent months, I have been introduced to the idea of depersonalization, which seems to partially explain this phenomenon. Imagine your emotional/spiritual-self feeling like it exists outside your physical being, almost like you are constantly looking down at your body through a cloudy window, watching it go through the motions, but feeling very detached from each experience. It is said this might help someone in constant pain (or other traumatic situation) compartmentalize their physical body’s suffering from their mental state as a coping mechanism. I’m not really sure. All I know is that over time, I have felt more and more like this entire journey has been an out of body experience and sometimes it’s hard to believe it’s real.
As I slowly begin my first treatment protocol for Lyme Disease, Rocky Mountain Spotted Fever, coinfections, and related conditions, I’m ready to share more intimate details of the days, weeks, months, and years that led me to this point. Although I fully admit I wasn’t the greatest advocate for my health at age 26, at least I kept a fairly detailed account of how this illness progressed. Since starting this blog, I have wondered how to best explain the tidal wave of strange symptoms that commenced in those first few weeks, as well as the slower roll of new and worsening issues over time. I want to balance sharing enough details to help those in a similar situation, while not putting the rest of you to sleep. So, I’m breaking up the info into three parts. Part 1 (this post) will explain the initial few weeks when my symptoms surfaced with no plausible explanation. Part 2 will describe the strange manifestations of my condition that occurred over the next several years. And finally, in Part 3, I will describe the relatively rapid decline that began in late 2017, prompting me to ramp-up my search for answers.
Part 1: Back to 2002. The vertigo remained severe enough that I was unable to operate “heavy machinery”, or watch TV, for about 6 months. Thankfully, Joel and I worked for the same company at the time, so I had a carpool buddy. I definitely had taken driving for granted prior to the nonstop spinning, and come to think of it, I had taken a lot for granted prior to getting sick. We often hear that you don’t know what you’ve got ‘til it’s gone, and I can say with the utmost conviction that you really don’t know how important your health is until it’s gone.
At about the one-month mark, a myriad of other symptoms started, most noticeably in the form of pain. On August 26th, I noticed muscle weakness and pain in my legs and lower back that, upon standing or walking, made me feel like I was going to collapse. Within a couple of days, the right side of my face and right arm began to tingle and felt numb, so, I took another week off work. As someone that lives with a great deal of guilt (Catholic guilt, to be exact), it was incredibly difficult for me to ask for this time off, even though deep down I was seriously worried I was dying. How silly are the priorities that we place on the various parts of our lives, yet even knowing what I know today, I still would have a hard time asking for that week off work.
On August 30th, the day Joel and I planned to head to Whistler for our annual birthday trip, I started noticing that I was very short of breath and my chest and throat felt tight. I was determined not to ruin our weekend and tried so hard to take a “mind over matter” approach; however, I still remember that fear I felt while sitting in the long US-Canadian border wait, taking shallow breaths, worrying that the further north we drove, the further I was from our local ER. By the time we checked into our hotel, I was so weak I could barely walk across the room. With every step, I felt like I would fall. Although I stayed in bed most of the next day, I mustered up the energy to venture out for an early dinner. Despite my efforts, we ended up driving home the next day and headed directly to the ER, again.
Although I was having issues with my legs, lower back, equilibrium, and breathing, I actually went to the ER because I began having chest pains. They performed an EKG and chest x-rays, and not surprisingly, my results came back normal. While these tests didn’t provide any significant answers, it was that day that I received a second diagnosis (vertigo being the first). The doctor told me I had something called costochondritis, or inflammation of the chest wall. Typically, this is a condition that resolves itself in a few days or weeks. However, almost 17 years later, I still can’t bear anyone touching my upper chest, and even the pressure of my car’s seatbelt is incredibly uncomfortable. That night, they sent me home with some pain meds and told me to rest.
By September 11th, I felt well enough to head back to work. I was still weak, but slightly less dizzy and my breathing issues had improved. Unfortunately, the tingling and numbness on the right side of my face and arms started up again, so my PCP suggested I go back to the neurologist for a brain MRI. Even though my MRI was considered normal, this was when the topic of Multiple Sclerosis first surfaced and would be a constant question over the entire course of my illness. Even so, my neurologist ended up chalking all of this up to “stress”, a theme I would hear time and time again over the next several years.
My Primary Care Physician (PCP) suggested I see an Infectious Disease (ID) doctor, which theoretically, should have been the answer to my prayers. Not unlike the ID doctor I saw at UWMC in 2018, the ID doctor in 2002 ran tests for HIV, Syphilis, Lyme, Rheumatoid Arthritis, muscle enzymes, etc. However, unlike my ID doctor at UWMC, I believe this doctor was truly trying to get some answers and treated my concerns with respect. But alas, all the tests came back negative. I know now that most west coast doctors don’t pay much attention to Lyme Disease (even today), so I’m sure it was barely a blip on the testing radar. I had no idea that 56% of patients tested negative using the two-tiered testing system in place, and at that time, I had never heard of, IGeneX, the go-to lab for tick-borne testing today. In retrospect, I’m not sure what I could have done differently, but it’s hard not to cringe at the fact I was tested for Lyme right away, and they didn’t catch it. Eventually, I want to share a lot more about why the current CDC-sanctioned Lyme tests are not up to snuff, but I will save that for another day.
By this time, my frustration was growing and I was not getting any answers from the western medical world, so I made an appointment with a Naturopath for September 25th. Upon examination, her immediate hypothesis was that the antibiotic, Cephalexin, that I had taken just a couple of days before the start of my vertigo, may have triggered some sort of illness in my body. In her opinion, due to my medical history of asthma, IBS, and several cases of bronchitis as a child, my liver had hit its limit for toxins. In other words, my liver could no longer process toxins that entered my body. So, she asked that I try fragrance-free products, start on a dairy and wheat free diet, and come back in a few weeks.
I revisited my Naturopath on October 9th, with no improvement of my symptoms. Upon physical exam, she found inflammation in my left ear and swollen tonsils. With this new information, she surmised I had an ear infection and that my tonsils were chronically inflamed. She prescribed Amoxicillin and suggested I see a cardiologist and ENT. Looking back, it was probably my naturopath that was closest to diagnosing an initial root cause. She knew there was infection and inflammation, which are the two main issues I continue to fight today.
After some of my breathing problems and chest pains had started to improve over the next couple of weeks, I was cautiously optimistic that I was starting to kick this thing; however, by the end of September all of my previous symptoms came crashing back. Not wanting to take any chances with my heart, I scheduled an echocardiogram for October 16th. I remember that test quite vividly, as it was one of the most painful moments of my life. Because of my overly sensitive chest that even clothes tend to bother, having a doctor push their ultrasound “stick’ into your chest wall with all of their might was more than I could endure. I couldn’t decide if I wanted to throw up or cry because of the pain. This is not a painful procedure for a “normal person”, but it was one I never wanted to repeat! After all that, the only thing they found was a heart murmur, which I already knew I had.
The one area I still hadn’t really addressed was my strange vision problems I experienced with the vertigo. I was noticing pain around my eyes, blurred vision, and dark spots, so I went to an ophthalmologist. His post-examination comments were the most peculiar to that point, as he said my vision was just fine; and then added that “some of my test results were strange”. He didn’t elaborate, said I didn’t need glasses, and sent me on my way. That day, I walked out of one more doctor’s office more confused than when I arrived.
Over the next several months, I started to slowly feel better, although never 100% again. This played a cruel game in my head, and on my body. On the days that I felt slightly myself again, I would second guess the severity of my symptoms and push myself to what used to be my normal daily activities. Then I would pay dearly for exerting that additional energy and would spend several days recuperating, until once again, I would start the vicious cycle over again. This was the beginning of my “new normal”. I didn’t realize until several years later that 2002 marked my first significant flare of an illness that would never leave me, and would continue to flare at an increasingly rapid rate over the years ahead. I didn’t realize that I was actually lucky back then, because I was experiencing flares with the most severe symptoms over a period of several weeks or months, with some time in between that was slightly better. Little did I know that these were the good ole’ days, before the every-minute-of-every-day full blown attack on my body.
The next major flare was in early 2006, and thus begins Part 2…
TOTALLY TICKED OFF 