Learn when and how to consider new treatments for chronic Lyme disease based on personal goals, current protocols, and support systems.
As many of you know from reading my past blog posts, I have been in remission from Lyme disease, babesiosis, ehrlichiosis, possible bartonella, and chronic active Epstein-Barr virus for more than 15 years. This means that I have not suffered a major relapse and that flares have been just that—brief periods of increased physical or neurological symptoms, often brought on by stress, overstimulation or overexertion, or another acute illness. I have more good days than bad, and besides needing a daily nap, I generally live my life as healthy people do.
To maintain my health, as I explain in “My Lyme Disease Is In Remission. How Do I Keep it That Way?”, I’ve worked with my Lyme Literate Medical Doctor (LLMD) to figure out a protocol that works for me. This includes allopathic and naturopathic medications, nutritional supplements, the “Lyme Disease Diet”, adjunct therapies, and boundaries that enable me to live well in the context of chronic illness rather than be defined by it.
By sticking to this protocol, I have continually gotten better, pushing my limits and capabilities and becoming more and more resilient. For years, when my LLMD suggested the idea of going off antibiotics, I balked. The first time I went off treatment, years ago, I relapsed within three months. Even lowering my current dose slightly has caused flares. That dose is a maintenance rather than treatment dose, and with the help of my diet and probiotics, it has allowed me to maintain remission without causing gastrointestinal harm. Why rock the boat?
After adding some new supplements that helped me get even stronger, I started moving past what had been my baseline for so long, and my openness to change shifted. So did the types of treatments available. Thanks to new research—much funded by GLA—there are treatments others than antibiotics to try for chronic Lyme, as well as new or different antibiotics being used. Pulsing has also become an option, one that wasn’t really used when I first started treatment.
So when my LLMD recently suggested I try a different antibiotic that might work better for my specific persistent symptoms and could eventually be pulsed, I didn’t balk. In fact, I was excited about the idea. My LLMD joked, “Is this the same Jen Crystal who never wanted to rock the boat?”
It is and it isn’t. It’s a healthier version of me who’s on calmer waters in a stronger vessel, able to see a brighter horizon than before. I feel more confident that a slight rock won’t completely capsize me, and that if it starts to, I have the tools in place to right myself.
Of course, I could be wrong. Everything’s a gamble with Lyme treatment. But I’m at a point where I’m ready to take a risk. How do you decide when you’ve reached that point? Here are some tips and considerations I’ve learned along the way:
- What are your treatment goals? When I was at my sickest, my goals were to be able to get out of bed and not feel shackled by exhaustion and pain all the time. Then my goals were to be able to be up for more than a couple hours. Over the years, my goals have obviously shifted. For a very long time, my goal was to maintain the remission I’ve enjoyed for years. Only now has my goal shifted to wanting to enjoy an even better remission.
- Is your current protocol helping you meet those goals? Are you satisfied with the results your current protocol is giving you, or are you looking for something more (recognizing that “cure” may not be achievable)?
- If your current protocol is working, how long have you been feeling well? Healing is not linear. Feeling well for a few days doesn’t necessarily mean there won’t be rocky days around the bend. If your current protocol has consistently given you more good days than bad for weeks or months yet you still feel like you want to get ever better, then it may be time to push to a new level.
- Is it the right time to make a change? Consider outside factors in your life. Is this a stressful time at work or at home? Do you have upcoming travel? If a change in treatment were to cause a Herxheimer reaction, do you have the time and space in your schedule to handle that? Don’t feel pressured by a doctor to try something new right now. It’s not just about being open to a change; it’s about figuring out the right time to try it.
- What is your support system? If a new treatment should make you feel worse rather than better, even just at first, are there people around who can help out? Do you have adjunct therapies in place to help support your body? Are there dietary changes you can make or supplements you can add to strengthen your body during a change?
- Do you understand the risks and benefits? Whether you’re trying a new antibiotic or adding a supplement, make sure your LLMD has discussed all of the risks and benefits with you, and that you feel like the decision to make a change is a collaborative one. Ask as many questions as you need.
- Make one change at a time. Doctors are eager to help, so they may throw several ideas at you at once. I’ve found that if I change more than one thing at a time and I react in any way—good or bad—I can’t tell which change has caused the effect. Try one thing for several days if not weeks before adding or subtracting something else.
- Go low and slow. My own body tends to react strongly to the slightest adjustment, so I’ve learned that I need to “trick” it into not really recognizing change. This might mean very slowly weaning off a medication or very slowly titrating it in. Even adding or subtracting one drop of a homeopathic supplement can rock me, so I make changes very minimally and stay at a new dose for several days or weeks before continuing to lower or raise it.
- Remember it’s your body, your choice. No one knows your body better than you do. No one else feels the effects of medications on your own body or knows exactly how your symptoms feel. You don’t need to try something just because a doctor suggests it. You are entitled to do your research, ask questions, consider risks and benefits, and decide for yourself if a change is right for you.
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