This article was first published on the Global Lyme Alliance blog on March 20th, 2018. Most of the links on this post are informational, but a few are affiliate links to help maintain this website.
Treatment of complex illness if rarely linear and one of the hardest things to cope with is when you stop making progress. I wrote a blog post for the Global Lyme Alliance blog about this very issue.
My numbers won't budge. Every month I go in for a blood test and every month I get an email from my doctor stating that my inflammatory markers are the same. The numbers are not so high to cause a panic, but they're not low enough to signal any real improvement either. I've tried everything from meditation to medication, but nothing seems to work. Each month I pray the numbers will drop and I’m devastated when month after month they stay the same.
I've put in all the work; there's been no stinting. I’ve been in treatment for three years. I've changed my lifestyle, my diet, and most difficult of all, my mindset. But I keep coming up short. There's no doubt I'm better. My bedridden days are mostly in the past, and the pain that keeps me up at night (painsomnia, I call it) happens once or twice week instead of every day. Another marker of my improvement is after treatment my herxheimer reactions are greatly diminished. These are positive trends, but still I am not where I want to be. I want clinical proof that my recovery is real. I want to know unequivocally that I'm heading toward remission. I've been at this dreaded plateau for months waiting to break free. I anxiously await the day when my inflammatory markers take a dramatic drop.
Your plateau may be different than mine. Maybe you, too, made big improvements in the beginning and now it's tapering off, or maybe you're stuck waiting for any minuscule improvement at all. Either way the lack of progress may be the hardest thing to bear.
All this was weighing heavily on me. Then one day I started thinking about actual plateaus in nature. Consider for a moment you are climbing up a mountain and reach a plateau. You've done the grueling work of going up the mountain and now you are walking on level ground. You are still moving forward, that hasn’t changed, but you’re not increasing your elevation. Maybe that's what plateaus are in treatment—a leveling off that doesn't feel like progress, because you aren’t climbing anymore. But you have achieved an incremental improvement in your recovery.
This bit of visualization changed the way I thought about my lack of headway, though there were still some questions I needed to ask myself— questions you may need to ask yourself as well:
Q: Have I really plateaued or is my progress just going slowly?
A: With Lyme disease the improvement can be slow . . . very slow. As they say, any progress is good progress. If you feel comfortable with your treatment protocol, you may need to practice patience and remember you are getting better. However, sometimes the progress is too slow and even if there is incremental improvement you may want talk to your doctor about exploring ways to speed up your treatment plan.
Q: Have you hit a plateau before? What helped jumpstart my healing?
A: If this has happened before, what was it that made the difference? Maybe it's a new supplement or an increased dose of medication. Maybe your thyroid or adrenals are out of balance and need attention. Try to remember back to what helped you before and try it again. It may help to keep a journal about what you think is and isn’t working for you.
Q: Do I need to change my treatment or ride it out?
A: As I said, with Lyme getting better takes time. Ask yourself if you think your current treatment plan is sufficient to to get you better. This is a good place to use your intuition. If you feel skeptical every time you meet with your doctor that might be your body telling you something.
Q: If I plan to stay the course when will I know it's time to adjust?
A: Give yourself a timeline—six months, nine months—for when you want to reevaluate. Verbalize your timeline to your doctor, so she or he knows what you're thinking. Ask if there is a test that can be run at that time to compare where you were before to where you are now.
Q: Am I testing too often?
A: If you're like me and your numbers aren't budging, maybe it's time to put more space between tests. This depends naturally on what is medically advisable. But I I did realize that the constant testing was causing me frequent disappointments, which weren't good for my healing. I have since decided to go from once a month to once every other month for my bloodwork and focus on other things in the meantime.
Q: Is there something else I could do to move forward?
A: A plateau is the perfect time to reevaluate your habits. Perhaps it’s time to add more nutrients to your diet or increase detox. Have you always wanted to try a complementary therapy? Now may be the time. Or are there other options?
Q: Is this a good time for a healing pause?
A: Have no doubts, recovery from Lyme treatment is a full-time job. It seems like there's always something else you can try, but is that the best thing for your body? This could be an indication that it's time to take a break from all the intensity and let your body rest at the top of the mountain.
Take some time and ask yourself these questions. Get quiet and let your intuition speak. There are few doctors, medications, or therapies that can give us as much insight as our own common sense. Remember the image of the mountain and keep walking forward on the level ground of the plateau—the uphill slope may be only a few steps ahead.
"There is nothing so easily remade as our definitions of ourselves." - Dinaw Mengestu
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I'm Kerry (She/Her/Hers) and I am a licensed therapist, group facilitator, poet, writer, & speaker. This is a place to acknowledge and validate our suffering and trauma, while also learning how to turn toward aliveness and spaciousness.