My Life With Lyme

On Easter Sunday 2007, I woke up unable to move from the neck down. It sounds scary now, but I wasn't scared at the time. I just thought I was getting sick, which had become increasingly common for me and meant being really sick. Little did I know how sick I was.

Nicole GreeneI thought I had the flu. Except I couldn't kick it. Nothing helped. My doctor tested me for all sorts of things: lupus, fibromyalgia, chronic fatigue syndrome, multiple sclerosis, sickle cell disease. But only one test came back positive: Lyme disease.

I'd never heard of Lyme disease. All I could think was, "No, I'm not an outdoor person, there's no way I have that." Then driving home I remembered: In 2001, a friend had pulled a tick out of my head and flushed it down the toilet. I never even saw it. I did not know about ticks, and I definitely did not know about Lyme disease.

Now, six years later, my Lyme journey was only beginning.

Lyme disease is a bacterial infection you get from the bite of an infected tick. Symptoms of the initial infection go beyond the well-known "bullseye" rash and can include fever, headache, chills, fatigue, muscle and joint aches, and swollen lymph nodes. If the infection isn't treated, symptoms can worsen to severe headaches, arthritis and severe joint pain, dizziness, nerve pain, and memory issues, among others. If caught early, many cases can be treated successfully. But if, like me, you don't know you have it, things can become much worse.

After my diagnosis, I thought through my entire medical history. I realized that I had actually had a lot of symptoms — I just didn't know they were symptoms. I was sick all the time. I had random fevers. I had joint problems, especially on the left side of my body. I was in my early 30s, too young for my knees and hips to hurt so much.

At one point, I was diagnosed with clinical depression. That made sense to me. I felt so blah. The world seemed grey, even though I'd just gotten married and felt like I had no reason not to be happy. The diagnosis was a relief. I took my medication, went to talk therapy, and eventually felt better.

None of my doctors ever put all of my symptoms together. But once I was diagnosed with Lyme disease, it all made much more sense.

I immediately went on antibiotics, which wiped me out so much that I couldn't go into the office, or even the grocery store. I was lucky to be able to work from home, but many people don't have that option. For almost a year, I missed a lot of things — my friends, family, birthday parties, celebrations, saying goodbye to loved ones who passed away. That first year was really hard.

Even after I started feeling better, my body wasn't completely well. When I wanted to have a second child, I discovered that Lyme can affect fertility, and once pregnant, I had to be monitored by a maternal fetal specialist. I've dealt with sciatica, a spinal lesion, neuropathy, temporary hair loss, cognitive issues, stress fractures in both knees, and two ectopic pregnancies. Lyme has affected my body, my work, and my relationships.

But my life feels like it's getting back on track. Now, I can say that I improve every year, partly due to luck. By pure chance, four years ago I discovered that a coworker's husband is a leading Lyme specialist. I had no idea there even were Lyme specialists! Through him, I've learned about chronic Lyme disease, its co-infections, and new options for treatment. Together, we're figuring out what treatments my body can and can't handle long-term.

There have been setbacks, of course. I am currently in what I hope to be the last few months of treatment for one of Lyme's three co-infections (Babesia, in this case). My diet has been radically altered, and I still don't have the energy I would like to have, but all good things come in time. A lot of Lyme-literate doctors don't take insurance, and all of the appointments, blood work, and treatments are out of pocket and very expensive. But when I feel good, I feel good. Through all of the ups and downs, I know that whatever I have to do to get healthy and stay healthy, I will do — and my family and I have made sacrifices to ensure that I have the resources to make those choices.

I know there are people out there who are suffering and don't know why. If you know something's not right, don't give up. Do your research, and then ask your doctor about it. Get a second opinion, or a third. Don't let anyone dismiss how you're feeling. It will feel hard to stay optimistic sometimes. Surround yourself with support. For some that's family and friends, but there are good Lyme support groups online too. Chronic Lyme disease is controversial, and some people don't even believe it's real. But just because others can't see it or feel it, that doesn't mean it's not happening. It's very real to those of us who suffer from it, and it can be just as devastating as any other serious disease.

It's been 15 years now, but I'm finally living with my Lyme disease.