If you follow me on Instagram, you know I’ve been dealing with some serious health issues, and what seems to be Lyme Disease. I say “seems to be” because I’ve entered into a very grey area of medicine, and no one really wants to confirm the diagnosis…yet. Even though I still have many questions to be answered, I want to share my story thus far, considering May is Lyme Disease Awareness month. Almost thirty days ago, I was struck with flu-like symptoms – extreme fatigue, chills, joint pain, headache, sore throat. I figured it was a viral infection or fibromyalgia flare, knowing the stress of our move probably weakened my immune system. The next day I developed extreme nausea and loss of appetite but still figured it was a weird virus that had to work itself out. Those symptoms continued off + on for a few days, until very suddenly, I developed extreme knee pain, to the point where I could barely walk (fyi I’ve never had knee or arthritic issues). It scared me so much that I went to urgent care, where I was informed my symptoms aligned with Lyme Disease.
I was told to watch for a bullseye, contact my primary care doctor, and be tested for it in 4-6 weeks (it usually takes that long for it to show up in your blood stream). Having minimal knowledge of Lyme Disease, I became immediately immersed online and began to educate myself. I saw my primary, and they agreed to test me based on my symptomology, even thought it was early, and I had no bite or bullseye that I knew of. While I waited for the results, my symptoms continued to get weirder and seemingly more specific to Lyme (to include scary neurologicial stuff). The test results came back – I was negative for Lyme according to the CDC. Here’s the kicker: the CDC does not consider someone positive unless all FIVE bands of testing are positive. I currently have two positive bands showing up, using the most standard test, the Western Blot. I now know, after reading How Can I Get Better, that this test was never intended for individual diagnosis. Meaning, it’s not sensitive enough – it does not pick up all strands of Lyme and related bacteria. In fact, over 80% of cases are missed by the
negligent strict CDC standards, especially those with chronic Lyme.
Without delving into more technical facts and figures, the bottom line is this: I know my body, and I know I’m ill. I’m suffering from a highly polarizing and political condition, and I have a long road ahead of me. I’m so thankful for this community and the outpouring of love and support I’ve received via social media. In fact, because of that, I’ve been in touch with quite a few people with similar stories, and they’ve given me hope. They’ve helped me understand that I’ll have good days and bad. The good ones will make me question whether I’m truly sick at all, and the bad ones will scare the shit out of me (like yesterday, when I couldn’t stand up without intense vertigo, had double vision and numbness in my limbs, and could barely care for my kids). I’m waiting to be seen by a specialist, and have contacted a few alternative medicine doctors as well. I’m hoping to have more answers soon, or at least have a plan of attack. I’m continuing to arm myself with education about Lyme, and won’t stop until I get the help I need. Now more than ever, you have to be your own advocate. No one is going to care about your health and wellness as much as you do. Thanks for reading, and if you’d had Lyme, know someone that does, or suffer from a chronic illness, I hope you’ll share your story here.