Lyme Update

Lyme Update - Under the Monkey Bars Blog

I was diagnosed with Lyme disease back in July. Had I known that there were symptoms for Lyme beyond joint pain, I might have caught it sooner. Dr. Su, my primary care doctor and guest blogger here at Under the Monkey Bars, estimates that I’ve been infected with this terrible chronic disease for about 3 years.

I never found a tick. I didn’t see a bullseye. Without gluten or dairy in my diet, I only had joint pain a few times over those years but always thought it was from exercise.

What I did have were symptoms that cycled through my body sometimes monthly or even every couple of weeks. They would last for two or three days and then disappear. When they came back, I’d usually forget that I had them before. Typical Mom with a full plate, right? Don started calling these symptoms the “ailment of the day.” It was a funny joke for a while…until we realized it was a disease.

Currently, my symptoms include pain at the base of my neck, congestion, ear pain, nausea, headaches, soreness in my feet, burning sensations in my back, hip pain, dizziness, night sweats, facial twitching, blurry vision, mixing up words, difficulty thinking or foggy brain, severe fatigue, lower abdominal pain, and dental pain. Not once did I mention these symptoms to Dr. Su over the past few years.

Instead, I went to my podiatrist for the foot pain. My chiropractor helped ease my back pain. The eye doctor couldn’t figure out what was going on with my eyes. Maybe I needed glasses? But with 20/20 vision? I told my gynocologist about the lower abdominal pain and night sweats. My blood work was normal but I had appendix surgery to alleviate the lower abdominal pain. My appendix was perfectly normal and I still have the abdominal pain. It was Lyme disease the whole time.

In the four months since my diagnosis, I’ve helped several friends through the testing and diagnosis process. It’s amazing how many people are walking around infected with Lyme. Many people get false negative test 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. Not all providers are able to order the iGeneX test, which takes 3 weeks for results but is worth the wait. iGeneX tests for 15 markers of the disease, making this private test much more accurate. 

I’m on a 6-month regimen of Ceftin, Azithromycin, and herbal supplements (parsley oil and glutathione) to treat the Lyme disease. Most people don’t realize that when you start the antibiotics, you feel worse before you feel better — for about 4 months. I have more frequent symptoms now than I did before I got diagnosed. It’s called herxing or a herx reaction, which occurs when dead bacteria release toxins into the blood and tissues faster than the body can handle it. Regular Lyme symptoms are amplified while your body tries to get rid of the new toxins.

I’ve figured out a few tricks to help my body work through the symptoms. I’m resting more than ever. I take gentle yoga classes twice a week to help with the joint pain. I see my chiropractor religiously every other week to manage the neck and back pain. I keep a weekly appointment for nerve stimulation treatments from a Myokinesthetics specialist. I take multi-strain probiotics every day at lunch time between antibiotic pills. I drink a cup each of black and green tea daily, as well as tons of water with lemon to help my liver flush out the toxins. Eating clean definitely makes my body heal faster. I follow a gluten and dairy free diet that’s heavy on leafy greens. I still have Lyme symptoms but I feel a lot better when I can take the time to help my body release the toxins.

Everyone’s body is different. Lyme disease is like a chameleon, constantly changing so that you can’t catch it. Sometimes people call Lyme disease an invisible illness. Most people who have the disease look fine, because the majority of the symptoms are internal. I’ve learned that I can turn it off and on sometimes, much like an actress. If I ignore my symptoms and have a fun night out, I’m recovering at home for two days after. When you have Lyme disease, you wake up most days feeling like you have a horrible cold plus a hangover and sore from a work out that you didn’t have energy to do.

The road ahead is still long for me, but I know that if I take care of myself, by body will heal. Lyme disease can happen to anyone. Chances are at least one of your friends is infected with Lyme and doesn’t even know it. Familiarize yourself with the symptoms so that you can help others get a faster diagnosis — and be able to diagnose yourself.

Know someone with Lyme? Don’t ask them how they are feeling. Try asking, “How are your symptoms today?” Be flexible when they cancel plans, because some days we just can’t pretend we’re okay. Some days I’m not okay at all. But life goes on, and I’m super thankful for the incredible friends and family who have helped me through this difficult time.

Be informed and be healthy, and always remember to check for ticks!

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  1. Jamie says

    Thank you for the update – glad to hear you are managing your symptoms as best as possible and taking time to care for YOU. Love all of your blog posts. xo

    • says

      I see Bob Keller at Keller Therapeutics in Newburyport (978-465-5111). I added a link to his website above; click on Myokinestheic. He takes my insurance so check with yours!