Multiple Sclerosis (MS) or Lyme disease?

I have to begin this post by stressing that I am not a doctor. I am someone who went undiagnosed with Lyme disease for at least twenty years. I fought a long battle with Lyme, bartonella and babesia and have been in remission for five years. I am not telling anyone that their diagnosis is wrong or right. All I can do is share my experiences and hope that maybe it’ll help even a few of you.

While not incredibly common, there is science that says Lyme disease has been shown to be misdiagnosed as multiple sclerosis. I have since learned that around 14% of Lyme disease patients are originally misdiagnosed with MS.  According to this same article, around 2% of Lyme patients are initially diagnosed with some other neurological disorder. (It’s important to note, I think, that this data is almost ten years old. Whether this number has gone up or down, I don’t know.)

I’m sure this will sound familiar to so many of you. For those of you who may be here, not yet diagnosed with Lyme disease but struggling with strange symptoms, I hope that you’ll take heed. My battle with Lyme disease could have been so different if I had been diagnosed twenty years earlier. Instead, the bacteria was given ample time to spread throughout my body, making treatment so much more difficult. This was my experience during the time I went through testing for multiple sclerosis.

My experience with multiple sclerosis

Nearly fifteen years before my Lyme disease diagnosis I began experiencing a slew of bizarre symptoms. It started with dizziness and brain fog. These dizzy spells crept up out of nowhere and left me reeling, sometimes for hours. They were strange dizzy spells that didn’t just occur in my head. They were full body and mind dizzy spells. Along with the dizziness I would feel like my head was floating above my body, disconnected from reality.

Shortly after the dizziness and brain fog, my tremor began. The tremor started in my hands and slowly, over years, progressed up my arms, into my neck and eventually into my legs. The dizzy spells and brain fog went away within a few months, as suddenly as they appeared, but the tremor would continue to worsen right up until the day I was diagnosed.

The other weird symptom that occurred around this same stretch of time, was difficulty swallowing. This symptom also came on suddenly. It was bad enough that I started to lose weight because I was afraid to eat. I was certain that I was going to choke and die. Granted, some of that is my own fear, but nonetheless that’s how it happened. This problem would also come and go over the years before my Lyme diagnosis.

MS has many multi-system symptoms and many of them overlap with Lyme disease symptoms. Again, I’m not saying MS doesn’t exist or that everyone diagnosed with MS actually has Lyme disease. But, the possibility exists. I, myself, was nearly misdiagnosed with it.

The following is an excerpt from my memoir, The Battle Within: My Lyme Disease Story

“It started with dizzy spells accompanied by brain fog. This bout of illness was the most perplexing symptom to emerge yet. It encompassed me and held me captive. It marooned me on a desert island surrounded by a sea of sensory deprivation. It sounds almost mundane, dizzy spells. Everyone has dizzy spells from time to time, right? So what? These, however, were dizzy spells that came on suddenly and persisted. I suppose it’s a misnomer to call them dizzy spells. Let’s call them dizzy hours that occurred on a daily basis.

You know that sensation you get sometimes after stepping off an elevator? Like the ground is still shifting and falling ever so slightly under your feet while you’re standing still. Or when you’re sitting at a stoplight and you feel like you’ve accidentally lifted your foot off the break and are inching forward, only to realize it’s actually the car next to you that’s moving. That’s what it felt like, only it wasn’t a momentary phenomenon. It lingered like an unwanted visit from a distant relative. Along with this sensation came a general feeling of disconnectedness or dissociation. It was as though my head was floating several inches above my body and unable to properly communicate with the rest of my body. It began to interfere with my work as well as my social life.

I remember one evening in particular. My then-boyfriend, Tom and I were out with a group of friends at a local bar. I am sitting at the bar with Tom standing next to me. The din of music is ringing in my ears and the smell of rotten liquor fills my nostrils. We have arrived and ordered ourselves a few beers. I’m smiling up at Tom when I feel the ground shift below me. It feels like my chair wobbled as a ripple in the earth rolled by. I grab the edge of the bar to steady myself and look down at the floor. I quickly glance back up at Tom with alarm in my eyes, silently screaming into the hubbub of the bar, what the hell was that? I can tell from the look in his eyes that he didn’t feel what I felt. With chagrin I realize I’m having a dizzy spell, again. I grab onto his arm to steady myself and give him a pleading glance. A look that conveys, it’s happening again. My head starts swimming and my eyes feel like they are floating. I can’t focus them or my brain. I am surrounded by noises that I can’t discern. The cacophony of all the conversations mixed with the music overwhelms my senses. I feel like I’m at the end of a very long echo chamber. It takes forever for all these noises to reach me and when they do, they bounce back and forth between the walls of my brain. It’s oddly loud yet quiet at the same time. Every few minutes another tsunami ripples under my chair. I try to follow the conversation of Tom and our friends who have joined us but I’m too disoriented. I smile foolishly and randomly nod my head, as if in agreement with whatever has been said. If Tom laughs, I laugh too. I hope these are the correct reactions. The room is closing in on me. It suddenly feels too small and stuffy. I want to leave but I am stuck to my barstool, afraid to move for fear that my body won’t respond appropriately. Then, super self-conscious thoughts overtake me. People must be able to tell how lost I feel. They must know my reactions to their conversations don’t match the intent. They probably think I’m wasted but I haven’t even had one full beer. All I can do is wait it out and hope it will pass soon…

After about an hour it passed and I was able to enjoy the rest of the evening but that was the last straw. That evening really scared me. I decided that I couldn’t ignore this any longer. So began a parade of doctors.

Over a six-month period I was put through a barrage of tests. Some of the tests were mundane, for instance, the tilt table test and the exhaustive inner ear exam. The tilt table test did, in fact, determine that I had low blood pressure but didn’t explain the persistent dizziness. The inner ear exam was negative. Some of the tests were quite scary with potentially serious diagnoses. I walked around for a week wearing a heart monitor while journaling my daily activities. The result came back negative. I had a cardiac CT scan to look for a hole in my heart. Yes, a hole in my heart! Thank god it was negative. But the one that terrified me the most was the test to determine if I had multiple sclerosis. I was really scared that I might have MS. I had felt pretty confident that I didn’t have a hole in my heart, but MS seemed entirely possible to me.

As it turns out, I had tested negative for multiple sclerosis. We were both incredibly relieved, of course, though this still left me with a fairly debilitating symptom and no diagnosis. Everything had come back negative. After tens of thousands of dollars in medical tests and screenings I still had no idea why I was getting dizzy all the time. The craziest part of this whole episode in my life is that within a few months, it stopped. Like that, no more dizzy spells. For months this had been a prominent factor of my daily activities and then it simply resolved on its own.”

In conclusion

The moral of the story is, advocate for yourself and for your loved ones. If something doesn’t feel quite right, do some research, or at the very least get a second opinion or even a third. I really wish I had been properly diagnosed many different times in my life. This is just one example. While I can’t say definitively these occurrences were Lyme disease all along, the evidence is pretty apparent.