By Kerry Heckman
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.
Opinions expressed by contributors are their own.
Kerry J. Heckman is a licensed therapist and author of the healing and wellness blog Words Heal. She was diagnosed with chronic Lyme disease in 2016.
Great article to begin meaningful dialogue.
- Not sure what tests she keeps having done but I’ve heard mixed opinions about the CD-57 test which some docs swear by and others like my own say it’s a general, very basic indicator of immunity and unless you have the number before you were sick and then taken at regular intervals throughout treatment, it’s just a number. https://www.tiredoflyme.com/cd57.html
- Inflammation is a definite bad-boy. One thing I discovered to eventually help me was MSM; however, I didn’t notice the help taking it while in treatment, only after treatment did it seem to really crush pain and inflammation: https://madisonarealymesupportgroup.com/2018/03/02/dmso-msm-for-lyme-msids/. This article also shows it’s good for the gut: https://madisonarealymesupportgroup.com/2018/01/03/the-invisible-universe-of-the-human-microbiome-msm/
- Another thing that helped this inflammation/pain for me was systemic enzymes: https://madisonarealymesupportgroup.com/2016/04/22/systemic-enzymes/ There are many brands out there. You might have to try a few to find one that works. I’ve tried different variations of Wobenzym as well as a brand my doctor sells. (I’m not affiliated with any companies)
- LDN was also a game changer: https://madisonarealymesupportgroup.com/2016/12/18/ldn/ I use a compounded form with only olive oil as an additive.
- For many, Lyme/MSIDS causes imbalances and deficiencies in the body. Finding out what those are and supplementing can make all the difference. For instance, most patients struggle with thyroid dysfunction (as well as other hormones) and magnesium deficiency (magnesium can help depression and 1,000 other things): https://madisonarealymesupportgroup.com/2018/01/16/magnesium-an-invisible-deficiency/ (In the comment section I give the kind my LLMD sells in his office and it’s been particularly successful. Again – no monies are exchanging hands) https://madisonarealymesupportgroup.com/2018/03/12/the-importance-of-vitamin-d-k-and-magnesium-for-lyme-msids-patients/ Most of us Northerners are deficient in vitamin D.
- I’ll never forget the ranger in the documentary, “Under Our Skin,” state that he never could have imagined that his greatest improvement would come AFTER three years of treatment. This has been my experience and my husband’s as well. I must add that after 4.5 years of treatment for us, and two relapses requiring 2-3 month stints of treatment, we got better EACH TIME we treated. This very well could be the “cycling” approached discussed by Dr. Burrascano here: https://madisonarealymesupportgroup.com/2018/12/28/the-history-of-lyme-disease-dr-burrascano/ In brief: he found that cycling 3-4 times typically worked for most patients. Ironically, the 3rd cycle yielded the worst herx. Pam Weintraub wrote about this in, “Cure Unknown: Inside the Lyme Disease Epidemic,” way back in the 90’s, yet few doctors do this. Cycling just means that after you are symptom-free for 2-3 months you quit ALL treatment. If and when symptoms return, you hit hard with antibiotics until symptoms leave again. You do this 3-4 times. Burrascano states his symptoms never returned and many of his patients had the same experience.
- Sometimes diet has made all the difference for some patients – like cutting out gluten or dairy or both. For some, herbs or treatments for inflammation made all the difference or help with sleep. I’ve also known patients who got better only after they treated for worms/parasites: https://madisonarealymesupportgroup.com/2017/10/03/removing-parasites-to-fix-lyme-chronic-illnesses-dr-jay-davidson/
- When I hit a plateau after years of treatment yet still had symptoms, I called another LLMD I knew and asked if he’d be willing to do a phone consultation with me, not as a treating physician, but as a second ear to hear what I’ve done to give me ideas for any omissions he saw. That phone call was worth every penny as he carefully listened to what I’d done and gave me ideas for things to try. Very helpful. I then took that knowledge to my LLMD and he was smart enough to implement them at my request based on another experienced practitioner’s wisdom.
- Lastly, I’ve found surrounding myself with experienced patients and doctors to be extremely helpful. You learn a lot by sharing your experiences and always come away with something you haven’t tried before. Don’t let this information bog you down. Only try 1 thing at a time so you can track any changes. Support Group is a great place to do this. Always run things by your practitioner as there might be drug interactions or things you need to consider or can’t try at all based on your specific issues/drug interactions.