My Lyme Story

I hesitate even to put into writing that I want to blog more frequently. My life right now is so full to the brim—which I am learning to see as a good thing, that my life is full of blessing not of burden, that these are opportunities not overwhelming things—but in this season of life, any writing needs to take a far back seat and I can’t apologize for those seasons when it just doesn’t happen at all.

I’ve also reconsidered why I blog—I mean, clearly it’s not to show off my awesome web design skills, to make money, or to build a number of followers. I want to write simply as an expression of my soul, a clarification of my own thoughts, and a hope that maybe it will empower someone else along the way.

If you want to read my blog on the rare occasions that I do post, would you do me a favor—to the right of this blog title, you’ll see a space under “Follow by Email” where you can submit your email address.

You won’t be spammed. I tried it as an experiment. You’ll just get an email whenever I do blog. I’ll still try to share my blog posts on Facebook, and on Instagram if I can figure out how, but I’m spending less and less of my time scrolling through my Facebook Newsfeed, and it seems ironic that I rely on others doing that if they’re going to read my writing.

Okay, so today I wanted to share my Lyme story. Because I believe that around the words “Lyme disease” there lurks not only a lot of confusion but also a lot of fear. I don’t google Lyme disease symptoms or even testimonies much anymore because of the fear that emanates from so many of them.

If you have Lyme, or are going to get Lyme (and I mean chronic, even debilitating Lyme), you don’t have to be afraid. You can be brave.

I looked around online to find a Lyme T-shirt because I wanted to share my story and bolster my fighter attitude. Too many of the ones I found shared a message along the lines of, “I have Lyme, which means I’m hurting right now, and no one understands me” which just sounded a bit too angsty. Okay, yes, a lot of people (and doctors) don’t get unseen chronic pain. I understand that. I found a T-shirt I like that makes me feel like a fighter:

My Story

If you remember January 23, 2016, at all, you might remember it’s the day about three feet of snow fell on this part of the country. The day it started snowing, my left foot started hurting and I couldn’t do my morning exercise. I didn’t think much about it.

Of my three children, the youngest was seven months old. I was in the middle of the Whole 30, a paleo diet, to lose the remaining baby weight. I was blogging about my diet and determined to get back to my healthy normal.

Within a few days, my foot was hurting so much I could hardly put weight on it, and it was ice cold. I visited a podiatrist, who did an X-ray, then ordered an MRI, and could find nothing wrong. He told me to wear a foot brace, take ibuprofen, and hope the pain went away. (I really don’t blame him or any of the other doctors who couldn’t figure out what was going on. They were kind and professional and tried to help me, but what I was experiencing was outside their expertise.)

A low point for me was sitting in his parking lot, weeping. My foot was killing me in a tight, cold, horrible pain. I needed to pick up my kids, breastfeed the baby, go home, make dinner. It all seemed impossible. To me in that moment, the worst-case scenario was a freak foot injury that would take six weeks to heal.

I wore a foot brace for the next three months. I could hobble along with it, and walk barely at all without it. My foot was cold and painful. I visited a podiatrist, an orthopedist, a physical therapist, a naturopath, and a neurologist.

I specifically remember the hour commute and long walk down the hallway to the neurologist’s office. Everything was so slow then—I could see the door where I was heading, and in a minute or two, I would get there. I stayed to the right and others would pass me. I got accustomed to looks of pity. I didn’t like “what did you do to your foot?” questions because I had no answer. The margins of my devotional from that time reveal my fear that I would never walk again.

When visiting our family doctor for my baby’s checkup, almost on a whim, I asked for a Lyme test. It came back as positive, but my doctor told me that my foot pain was probably unrelated. He prescribed Amoxicillin since I was still breastfeeding, and I took it for a month. It made no difference.

In April, I made the difficult decision to wean my son at ten months old. Without knowing if it would even help, I started doxycycline and the Cowden protocol. Over the next few weeks, I would spend hours curled up on the couch almost comatose. I didn’t know it at the time, but it was the Lyme herx reaction, where you feel worse before you feel better. As the Lyme is dying, the pain increases.

In May, I took off the boot and started wearing real shoes again. But it wasn’t the “hurrah! I’m better!” moment that I’d hoped for—or that some people assumed, once they saw the boot off. My foot was still tender, and my upper left leg was now hurting.

I assumed my leg pain was related to wearing a boot for three months, and saw another physical therapist to help me “learn to walk again.” June was a terrible month for me. In my months of foot pain, nothing had hurt except my foot. Now the Lyme had been released from that tiny metatarsal area and was hurting my entire left leg and messing with my brain. Every step was pain, and I was terribly depressed. I wasn’t suicidal, but I kept thinking that my husband and kids would be so much better off if I was dead. I didn’t even realize how irrational that thought was.

In July I visited Dr. Carolyn Walsh in Leesburg, Virginia. I printed out my notes, and when she asked me my story, I was so low that I just started crying and handed it to her. She prescribed a combination of three antibiotics: minocycline (in the doxycycline family), biaxin, and flagyl. These three were pulsed according to a strict schedule.

She also wanted me to continue Cowden, increase my Vitamin C, take regular Omega 3s and a strong probiotic, and start taking NAC and Ubiquinol. Within two days of starting NAC and Ubiquinol, my depression lifted. I woke up one morning and was like, “Whoa, I’m happy!” I didn’t realize until then how dark my life had become. I have a new appreciation for the reality of physical depression and new compassion for those who experience it.

July through October was a series of pulsing antibiotics and gradually feeling better. I took nothing for granted—in October I walked a few blocks around our neighborhood and felt fine! Woohoo! Little things like that were huge to me.

This is where I wish I could say “happily ever after” and be done, but I still haven’t gotten to that clear ending. In January 2017 my pain worsened again, then got better. In March, I had a flare up in my left ankle and could barely walk for two days. When something like that happens, I tend to panic. I don’t know if it’s going to last for two days, two months, two years—all I know is that I suddenly, inexplicably, can’t walk. As in, I’m walking down the hallway, and the first ten steps I’m fine, and then suddenly I can’t take the eleventh. It comes without warning.

I told myself, “Next flare up you are not going to panic. You know what to do now. You take antibiotics, the pain might get worse, then it goes away. You can do this.”

Next flare up in May, when the pain spread to my right leg for the first time and I could barely drive, I was trying to remember that “no panic” rule, but my brain was in full freak-out mode. I was more objective this time to recognize that the panic itself was a Lyme symptom. I knew that the pain was treatable and was not going to last. But my body was experiencing inflammation and my brain was in a haze of physical anxiety.

If you’re freaking out about Lyme, can I encourage you with this—that anxiety may very well be physical. Something in your brain is off. Give yourself grace. Physical anxiety is not a sin any more than a common cold or flu, but just like any sickness, it can be a temptation to sin. And God always provides a way out. In the middle of weakness, there is such great grace to rest in His arms and just admit, “My brain and body are freaking out right now, but I want to trust You. Jesus, hold me and get me through.”

In the spring of 2017, I decided with Dr. Walsh’s counsel to quit the Cowden protocol—it’s expensive and didn’t seem to be doing me any good. That said, one thing I have learned with Lyme is that different things work for different people. It makes sense that the healthier you are in general, the better your body is going to fight Lyme. Build your immune system. Keep taking probiotics. Do all you can to be healthy. But, just because that supplement or that diet was someone else’s miracle cure does not mean it will work for you. It’s okay if it doesn’t. You will find with a good specialist’s help what does work for you. Keep positive because so much of the battle is in your brain.

In the spring and summer I also tried light therapy, which I think really helped me. I started taking the herbs Stephen Buhner recommends for Lyme. I refilled my antibiotics and did one more round. I try to be really careful with antibiotic use—follow a pulsing schedule, take a break in between rounds, take lots of probiotics. For me this mitigated the effects of antibiotics, and I experienced a lot of healing from them.

Ultimately, what has helped me and what hasn’t? It’s hard to always know for sure. I haven’t had a flare up since May, so I’ll take that as a sign that what I’m doing now is working! I still have a little bit of residual pain. Frequently I have thoughts like, “Whoa, my knee hurts” or “Ouch, my ankle” but often those thoughts are gone as quickly as they come. So I don’t know that I could say my Lyme is completely in remission, but I’m functional again. I can live and walk and care for my kids and work and do what I want to do. I have a very simple exercise routine, and I’m hoping maybe next year I can start running.

Does Lyme mean the end of your life? In a way, yes. Because it’s a beginning of a new life where you are braver. You are stronger. You are more aware of your body and spirit. You make healthier choices. You don’t take one darn thing for granted.

Don’t listen to the voices of denial that say chronic Lyme disease doesn’t exist—of course it does. Your suffering is validated and real. But also, don’t listen to the voices of fear that if you venture into the woods and never find that minuscule tick, you will be ruined. No, you won’t. You will find redemption in your suffering. You will find hope in the fight.