This is it. My most revealing post so far. I feel naked already. I have Lyme disease. There, I said it.
Please don’t say you’re sorry, because no one is more sorry than I am. I’m writing this post because Lyme disease is so controversial that most of us don’t even know the symptoms or how different the treatment plans can be. I didn’t, and I wish I had known.
I pulled a tick off my back a few years ago after working in the yard. I didn’t get a bullseye. I didn’t get flu symptoms. Maybe it it was that tick or another one that I never found — most people don’t see the tick that infects them. I’ve thought long and hard about when I got it, but it really doesn’t matter. Either way, I have Lyme disease.
I would still be walking around not knowing I have this bacteria growing inside me if it hadn’t been for a few chats with a friend, who recently got diagnosed with Lyme herself. She started telling me some of the symptoms, most seemingly ordinary. Headaches, ear pain, back pain, jaw pain, congestion, difficulty concentrating, foot pain, and so many other symptoms. She had stopped telling people how she was feeling because she felt like she was complaining all the time, and that they would think she’s crazy.
And then she mentioned that her husband said she had a new symptom every day. I said, “You mean like the ailment of the day?” And she said, “YES!” I sat down and took a deep breath. Because for the past few years when Don gets home from work, he asks me, “What’s the ailment of the day?” The girls laugh, but every day there seems to be something that’s bothering me. And it somehow became the norm.
One day I’d have an ear ache, and then it would go away. I’d feel like I was getting a cold, and I’d miraculously fight it. I’d think, “I’m so healthy that I beat that cold!” I started going to the chiropractor more often for pains in my neck and back, and more recently my hip.
Sometimes my legs would hurt when I finished climbing the stairs to our bedroom on the 3rd floor of our old Victorian. I’d blame it on the barre class I went to that day or the day before. I knew that joint pain was a Lyme symptom but didn’t realize I was having joint pain at the time.
Some days I’d feel so tired that I could cry. But everybody’s tired, right? I started using those words as a mantra in my head, “Everybody’s tired.” And I’d keep going, crossing items off my To-Do list and taking care of my family.
It always seemed that the symptoms were worst around that time of the month. So I blamed my P, as I call it. For almost three weeks out of the month, I could blame hormones. A few times I had night sweats, which I only mentioned to my gynecologist, not my primary doctor. My blood work came back normal so my gynecologist said not to worry about the night sweats.
I’m so focused on the kids and running the house that I rarely keep track of myself. Not once did I think it was odd that I keep getting weird aches and pains…because they always went away in a day or two. They never lasted long enough for me to even tell my primary care doctor. In fact, at my annual physical in May, I told Dr. Su that I felt great. It never occurred to me that something was wrong, very wrong.
That’s the thing with Lyme disease. It’s so good at disguising itself. Which is why it’s so hard to diagnose. Many people get false negative results because reliable diagnostic tests are not widely available. The FDA approved Lyme test from the early 1990’s only measures 3 markers of the disease and frequently yields negative results for people who are suffering from Lyme disease. Dr. Su ordered me the iGeneX test, which takes 2-3 weeks for results but is worth the wait. iGeneX tests for 15 markers of the disease, making the test much more accurate. It also tests for co-infections, which is another controversial area of Lyme. And yes, I’ve got one of those too: Bartonella.
When Dr. Su examined me the day we went over my results (7/8/15), he said he would have diagnosed me with Fibromyalgia if we didn’t know it was Lyme disease. I’m on two antibiotics, which I’m thrilled to say that I’m not reacting to!! I have 4 drug allergies so I was super stressed about taking anything; it’s been years since I took antibiotics. My treatment plan is taking these two antibiotics for at least six months, while continually evaluating symptoms as they arise.
After going over all of my symptoms and thinking back to how long it’s been, we’re estimating I’ve had Lyme disease for three years. My symptoms have worsened over time, but that’s not the case for everyone. Dr. Su says I have a better outlook of healing because of my healthy lifestyle. Our goal is three months of symptom remission. He may try cycling the meds and possibly some supplements like glutathione once I’ve been on the antibiotics for a while.
Right now, I’m getting ready for the herxheimer reactions, known as herx or herxing. These reactions are the result of massive die-off of pathogens by the antibiotics. The dead or dying microbes release toxins into the body, and symptoms result until the body is able to process and eliminate these toxins, or detox. Sometimes herx symptoms are worse than usual Lyme symptoms and often feel like the flu. Fun times ahead!
I wake up each morning not knowing how I’m going to feel. Every day, every hour is different. I’m really thankful to have planned a low key summer with the monkeys. I’m trying to trust in my body. Trust it can and will heal itself. Taking life one day at a time.
If you think you have Lyme disease or know someone who may have the disease, seek out a specialist who sees Lyme cases frequently. Lyme is a complex disease that is difficult to diagnose. Educate yourself and learn the right questions to ask. Know the symptoms so that you can catch it before you have chronic Lyme. Trust me, you don’t want to mess with Lyme. If you live in a tick infested state like Massachusetts, do tick checks every night. You might even consider having your yard sprayed by a professional.
Be smart and be healthy, friends. And don’t forget to check for ticks (couldn’t resist linking to the song)!