Most people who know me know that I’ve had multiple sclerosis for just over a decade. I worked in patient advocacy and started my career as a writer doing exactly this, writing educational material to help others with chronic illness. I was just 21 at the time I was diagnosed, and have had a very typical experience with the disease. I’ve had a relapsing remitting course, meaning I have “episodes” of neurological disability that usually resolve pretty well (I recover ~90% most of the time). Typical symptoms include:
- Nerve pain
- Muscle weakness
- Unusual sensations (I had “rubber band” feelings on my arms)
- Optic Neuritis (reduced vision and eye pain)
- Slurred speech
- Diminished cognitive ability (I had trouble word-finding, and sometimes comprehending)
- Loss of coordination
- Balance trouble
- Muscle spasticity
- Urinary frequency
To be recognized as a “relapse”, the symptoms would have to last more than 24 hours. For me, they’d usually come on over a day or two. I’d call the doctor, I’d go in for an MRI (we’d always find new white matter lesions), we’d start IV solumedrol and within a few weeks or months, I’d be back to a pretty good baseline.
These episodes were frequent at first, happening every 3-6 months. Around the 5 year mark, they became less frequent, happening once every few years at most. I’ve been in remission a long time now. This is somewhat strange, as MS usually gets worse over time. But I attributed my improvement to a change in diet and lifestyle I undertook in 2010. I started crossfit, I eliminated dairy and eggs from my diet (first being vegan, then adopting a “paleo”-esque diet) and was overall a much healthier person. I called this a wonderful byproduct of the change.
In the months that I have started to suspect I have late stage Lyme disease, I’m frequently asked “does that mean you don’t have multiple sclerosis?” I’ll admit, I’m curious to see what my Lyme literate physician will make of this. But for now, my thought is this: I do think that I have MS, at least technically. But this might explain why. Multiple sclerosis, you see, isn’t really a description of an underlying disease state. It describes WHAT is happening, but not why it happens.
Multiple Sclerosis is the name for a condition in which your own immune system destroys the myelin sheath that coats the nerves in your central nervous system. This is DEFIITELY happening to me. Without the sheaths, the nerves don’t perform as well and I have symptoms associated with the damage until it repairs.
In the most widely-accepted view of multiple sclerosis, this happens as a result of a malfunctioning immune system. And until now, I believed that was what happened to me – a simple glitch that made my system haywire. But I no longer believe that my MS is a result of malfunction.
I believe the Lyme disease (spirochetes and cysts) are at least occasionally inhabiting the myelin sheaths around the nerves of my brain. It’s well known that those little bugs LOVE fatty tissues. And my immune system, upon spotting them there, mounts an attack that damages the myelin.
So is it multiple sclerosis I have? Up to interpretation I guess. In the sense that I’m having de-myelinating events, yes. In the sense that it’s all an autoimmune malfunction, no. But the outcome is certainly the same. Here’s a video by a Lyme-literate doctor in Seattle who has similar speculation on the topic.
The big question for me at this point is, “What does that mean?” Well, hopefully it means that if I can eradicate the bacteria, I will cease to have attacks on my central nervous system and all of this will go away. Even if eradication isn’t possible after such a longstanding infection, I believe getting it better under control can only help.
I do certainly think I’d have been better served if I’d received a Lyme disease diagnosis 10 years ago instead of MS. I was tested for Lyme that day, having presented in the ER with classic symptoms of neurological Lyme including confusion, slurred speech, right sided bells palsy, right sided weakness and balance trouble. When my doctor walked in and said “well you don’t have Lyme,” I didn’t know to ask more questions. I just accepted it and moved forward. 10 years later, I’ve learned that the CDC-recommended tests are inadequate. Most people who have their spinal fluid tested by those standards show up negative. In the end, I believe I got the “MS” label simply because it’s more accepted, more traditional. It was the condition the doctors were more familiar with. (The CDC doesn’t yet recognize late stage Lyme and thus, most doctors aren’t familiar.) As a result of the missed opportunity 10 years ago, I’ve let those bugs replicate in my system every 28 days for this whole decade while I suppressed my immune system with MS drugs. Sigh. But the important thing is, I know now. And I can finally address the right issue here.
Unfortunately there are more questions than answers on the subject. And it will probably remain that way a great while. But I have more answers here than I did before my Lyme diagnosis, and a new and powerful lever to pull for treatment.