So, anyone following me on this path with Lyme is probably aware that one of my most prevalent challenges with the illness has been with my muscles. A cruel twist of irony, really, given that USING my muscles for weight lifting and other adventures has been a major and defining passion of mine. But, nobody ever said this whole human existence thing was meant to be fair, right?!
Anyway, I want to share a symptom specific progress report on this one. The news is good.
The first muscle challenges I had crept up in 2011. Out of nowhere, I got this gnarly muscle strain in my right rhomboid. I couldn’t stand up straight or lift anything for nearly 2 weeks. Acupuncture and active release therapy helped me out that round. But I went on to get this very same injury several more times over the coming years, and always on the right side. And always, seemingly, without provocation.
In 2011-2012, I also started to develop a lot of tightness in my trapezius muscles. I didn’t think much of it… I was a bit overweight had just started crossfit as a means of getting fitter. I had never lifted weights before and figured that, on me, those muscles just wanted to get tight FAST. I know now, this is a super classic symptom of Lyme disease.
As you all know, Lyme disease and bartonella (my only known coinfection), didn’t impact me in a full-body way until the great collapse of 2014. And even then, my muscles were pretty well behaved at first, actually. It wasn’t until early 2015 when things got ugly – fast. The tightness in my traps grew, and spread all the way up my neck where pain radiated from the base of my skull. I had horrendous facial pain that spread out like a spider web from my right jaw (everything, always on the right side). My erector spinae muscles, the long stabilizing ones that run on either side of your spine, were way too tight, weak and would seize up at the slightest provocation. Standing, bending and any mount of balancing became extremely difficult for me. When putting away dishes, for example, I had to hold onto the counter while I lifted a bowl from the lower rack of the dishwasher. Hiking, biking, even just standing at a Sounders game became pretty impossible for me at this point. And to make matters worse, I began experiencing myoclonic seizures. Not nearly as scary as it sounds, I’d have these when I laid down and the muscles in my back would begin to release. Rather than unwind slowly over time, they did so in short, kind of violent bursts, I’d have full body shakes for 10-15 minutes each night after I got into bed. Not a physically horrible experience, but sort of emotionally traumatizing.
ANYWAY. Somewhere around May 2015, my neurologist who treats my MS put me on Baclofen, which was a godsend. It’s a muscle relaxer that works in the nerves to prevent muscle spasticity. Very commonly used for muscle seizures in those with spinal cord injuries, it’s a pretty safe drug to be on. Plus, it doesn’t make you loopy or weird or anything, which I appreciated. For the last year, I have been on 10mg 2x a day and that helped IMMENSELY. The symptoms weren’t at all gone, but they became minimal enough that I could mostly function with a little caution.
Fast forward to my actual diagnosis of Lyme and Bartonella in June 2015, I began treatment of the actual problem: infection. It’s been slow, but I’m very happy to report that these symptoms have all gotten SO much better. I kept progress videos, which I’m now very grateful for. Recovery is so impressive when you can see it with your own two eyes! I mean… check this out:
June 30, 2015: This represents the way I’d been for most of 2015.
August 3, 2015: This is around the time I started seeing my first improvements on the Horowitz protocol. This video was taken on a really good day for the time, but this wasn’t a sustained increase in function yet.
October 2, 2015: Having done LymeStop and several months of Horowitz protocol, this is when I started to make my biggest improvements. Doxy, cefdinir and Bactrim were my magic combo. But, this was really hard for me – you can see the red face. And I was pretty fatigued after. I remember trying to reduce my baclofen dose to 10mg 1x a day at this point and having an incredible rebound of muscle tightness. I stayed on 10mg 2x a day.
April 16, 2016: While I haven’t yet attempted heavy lifting or hiking, but I no longer worry at all about my muscles’ reaction to normal everyday activities. I move incredibly well, I have minimal pain, I can stand, balance, and I even went on a pretty decent bike ride yesterday. In short, these symptoms don’t even enter my mind unless I’m considering a more extreme activity. And, as of this week, I am down to 10mg of baclofen 1x a day; transition went well, only very minimal rebound muscle tightness which faded swiftly. At this point, I think I’ll soon be ready for some very very light weight lifting and easy hiking. I don’t think it’ll be long at all before I’m off the supportive meds altogether.
Overall, this is thrilling for me. I posted in July of last year about how badly I’d love to be back under a barbell. It seemed like such a distant impossibility at the time. I can’t help but wonder… by July 2016, will it happen?!
A girl can dream.