Post-treatment Lyme Disease Syndrome: When Lyme Disease Becomes Chronic

There are days I feel as though my body is constricted by a thousand weighted blankets, and I can't even lift my foggy head off the pillow, let alone carry on a coherent conversation with my husband or daughters. There are days my muscles burn like they're on fire, my bones cry out as if they are being crushed in a crematorium, and I am left bawling on the floor in the fetal position. On days like that, my husband scoops me up and puts me in an Epsom salt bath.

Some days, when I'm in a flare, I feel like I am dying inside. It is a battle I will be fighting for the rest of my life.

Now I know I have what some clinicians and researchers are calling chronic Lyme disease, aka post-treatment Lyme disease syndrome (PTLDS), according to the Centers for Disease Control and Prevention (CDC), a tickborne infection that took a decade of my life to properly diagnose.

How It All Started

It all began after a day of blueberry picking. It seemed innocent enough when my husband picked a tick off the nape of my neck. The next day when I called the doctor's office, they told me I could throw it away; we don't really have Lyme disease in Georgia, they told me.

I'm not a very outdoorsy person—I would rather be sipping margaritas at a pool or in a spa any day—so my unfortunate run-in with the nasty little critter became a family joke. My sister-in-law sent me the Brad Paisley song, "Ticks," which was new at the time. We had a good laugh at the lyrics: "I'd like to check you for ticks." That's the only reason I remember it was 2007.

I had no Lyme disease symptoms at the time, so several years later when my blood work was a little off, my doctor chalked it up to my pregnancy. The year after having my daughter, debilitating anxiety came out of the blue. My doctor prescribed Celexa, a selective serotonin reuptake inhibitor (SSRI), for anxiety.

Over the next four years, new symptoms cropped up at different times: stabbing joint pain, heart issues, migraines, and mono-like fatigue. When I complained of constant nausea and constipation, my doctor blamed the anxiety I was being treated for and put me on an acid-blocking drug to quiet my gut issues.

Visits to two different optometrists for extreme dry eye yielded two different diagnoses—and prescription eye drops. Finally, a gastroenterologist I saw for the ongoing stomach issues ruled out Crohn's disease and colon cancer (my colonoscopy came back normal) but sent me to a rheumatologist to follow up on my bloodwork.

A friend who had Lyme told me she thought I had Lyme, but I was hesitant to diagnose myself when no doctor was going down that road.

It wasn't until I tried the Whole30 diet, eliminating foods like nightshades, dairy, gluten, alcohol, coffee, corn, and soy, that I realized that these symptoms must be related since many of them improved by changing my diet. When I told this to the rheumatologist, his reply was, "But tomatoes are so good for you." He diagnosed me with Sjogren's syndrome, an autoimmune disorder, and gave me painkillers.

This was the point where I knew I needed to stop seeing specialists. I had been in and out of medical offices and felt unheard and misunderstood. With my friend's encouragement, I decided it was time to go to an integrative doctor who would look at everything as a whole.

An Alternate Route and (Finally) a Diagnosis

Ultimately, [the integrative medicine doctor] diagnosed me with Epstein Barr virus infection and leaky gut, which she treated through diet, lifestyle changes, and supplements. A conventional Lyme test came back negative. She said that we could still go ahead and treat for Lyme since it could be a false negative, but I wasn't ready to take that step without a definitive diagnosis.

After seeing the integrative doctor and implementing her treatment plan, I felt better in many ways, but I still didn't feel like we had gotten to the bottom of things. My friend pushed me to see a "Lyme literate" doctor and more than a year later, I finally did.

My Lyme doctor finally confirmed what my friend had suspected. A more sensitive, comprehensive test not covered by health insurance provided the missing piece of the puzzle. My doctor also looked for and discovered a rash where I'd been bitten all those years ago, which to this day comes and goes. And so I began a treatment protocol based on guidelines from the International Lyme and Associated Diseases Society (ILADS), which recognizes that patients with chronic Lyme require individualized treatment that may involve extended courses of antibiotics.

What Other People Saw

All this was going on behind the scenes, but this is what the outside world saw: When I showed up to my kids' school without makeup, it was because I felt like I had glass in my eyes. People had hurt feelings when I passed up dinner invitations, not knowing it was because I was terrified that I would get sick with nausea at the table. One time when I did go to our good friends' house for dinner and I had just one glass of wine, I got so sick with fatigue and nausea that it put me to bed for a week.

My neighbors didn't know that instead of chatting with them at the bus stop, I was lying in bed trying to conserve enough energy to greet my girls and get them an after-school snack. When I signed up as a mystery reader at the girls' elementary school, I came home and crashed for several days in bed, dead to the world. At church, no one could see my migraines, my fluttering heart, my constipation, or my weird rashes. After going on a family road trip, I spent the next two months in bed.

Once, at a party, I shared my story about living with chronic Lyme disease with a woman, and when I finished, she said to me, "Well, thank goodness they got to the bottom of what was causing all your symptoms. And thank God it's not one of the bad ones." It stopped me dead in my tracks. I wanted to punch her and cry at the same time. It hurts when people don't take me seriously because they say I "look so good" or "don't look sick."

The Path to Recovery

As part of my treatment regimen, I take about 25 meds—antibiotics, prescriptions, supplements, and herbals. Some are covered by insurance and some are not. At times, the treatment makes me feel much worse than the Lyme symptoms themselves. The meds are supposed to kill the Lyme, boost my immune system, and manage my symptoms. I have to have bloodwork done every three months. I used to be deathly afraid of blood draws and now I have 22 vials drawn each time.

Now that I'm nearing the end of treatment, flares happen less frequently. My doctor said I can't completely eradicate Lyme at this stage. It is in me, so my treatment will just reduce the number of bacteria in my system. I will be doing what I can to prevent and manage flares for the rest of my life.

My husband and I have spent thousands upon thousands of dollars to help me get on the path to recovery. My detox and pain management regimen includes acupuncture and infrared sauna treatments. I follow a low-inflammatory Paleo diet.

Everything zaps my energy quickly—even showering or talking on the phone—so I am very deliberate about what I say no and yes to. No more serving as a chairperson with the school PTA or on committees at my church. No more grocery shopping; instead I use Instacart. When I know something big is coming up, I prepare by skipping something else and resting. If I overdo it, Lyme rears its beastly, ugly head.

My husband and my girls are my top priority, so I plan everything else around them. They have been through so much, and we try to find ways to laugh through it. When high mold levels in our home were hindering my healing, we moved into an Airbnb. In the middle of the night, we had to evacuate when a gas line was struck by lightning. At 2 a.m., we repeated our ridiculous, overly enthusiastic family mantra, "What's the keyword, girls?" They answered: "Flexibility!" "And what are we on?" "A fun family adventure!"

Lyme has put so much into perspective. My husband and I had no clue how deep our vows would ring "in sickness and in health." Many marriages don't survive a chronic illness. God knew all this and chose the perfect "other half" for me. We have grown so much through it and appreciate our marriage more than if Lyme didn't happen. To many folks, our life seems upside down, but I've never been more hopeful. When I do make it to that girls' night birthday dinner, help with an event at my daughters' school, or enjoy a beach vacation with my family, I feel so happy, excited, and…alive.

Note to readers: The CDC recognizes what's called "post-treatment Lyme disease syndrome," the lingering symptoms some people experience even after treatment for Lyme disease. However, there is no agreed-upon definition of "chronic Lyme." Many scientists and clinicians question whether chronic Lyme even exists. While the International Lyme and Associated Diseases Society recognizes the condition and the need for individualized treatment, which may involve extended courses of antibiotics, neither the CDC nor the Infectious Diseases Society of America endorses prolonged antibiotic treatment for Lyme due to the potential for serious complications.