I fought for a diagnosis for years! Bladder pain, pelvic pain, labrum tear in the hip, balance problems, speech issues, memory issues, skin manifestations, muscle and joint pain and stiffness, motor movement problems, depression, anxiety, vision problems, loss of libido, hypothyroidism, 1 cervical and 2 thoracic disc hernations, stage 2 spine degeneration... the list went and still goes on and on.
While I was getting sicker and sicker and literally felt like I was dying, I looked completely “normal” to everyone else, except my boyfriend who basically watched my whither away. I became a shell of who I was. I was known as strong, fit, bad ass, a weight lifter, a runner. I was teaching group fitness classs, teaching personal training sessions, running an online fitness program, exercising 5+ days a week, hiking, camping, playing soccer...
Then all of a sudden, I developed severe bladder issues that brought me to the ER repeatedly, ran through multiple urologists and pelvic floor therapists (2016). I was diagnosed with interstitial cystitis and pelvic floor dysfunction (2017). Not too long later, I tore the labrum in my right hip. Throughout that year (2018), we tried rehabbing my hip and pelvic floor, but any progress we made was halted by reoccurring lower back pain. I never experienced back pain in my life and now, I couldn’t get rid of it. By the end of 2018, in a matter of months, I could hardly walk without feeling like I would fall, my hands would tremor, the words coming out of my mouth would get mixed up and make no sense, my skin felt like ants were crawling all over me, I developed extreme neck tightness, lower back and hip pain, leg numbness / heaviness, dizziness, vision nearly blacking out then tunneling back in, constipation worsened, endless food intolerances. So much was happening at once and I had no clue why. I saw so many doctors and no one would give me a good answer / one I would accept.
I joined a million Facebook groups, especially ones pertaining to #InterstitialCystitis . That’s when I read about stealth infections like mycoplasma, #Bartonella , and Lyme disease. I went to my primary care and begged him to run a Lyme disease test on me. It came back equivocal, which to the conventional / allopathic medicine world meant it was negative. I learned from these FB groups that when it comes to the Lyme disease tests (Elisa and western blot), they are extremely inaccurate and not reliable. There are a lot of false negatives. So, knowing this I found a Lyme literate practitioner and brought this test to her. In the Lyme disease world, equivocal is a positive result. But I also had all the clinical symptoms of a Lyme disease patient. So, finally 3 years later I was diagnosed with #LymeDisease . At first I was relieved to be validated, that I wasn’t “crazy” and I wasn’t “blowing things out of proportion”. But soon, I learned how controversial, expensive, and difficult this disease is.
So now, almost 4 years after my #Diagnosis I am still treating, but in a very different way than when I first started. Lots of supplements, medications, sauna, diet change, etc. The treatments can be very overwhelming at times. I still mourn the person I used to be...
But I HAVE to remind myself that I am strong. My body is strong, my mind is strong. And being of this disease- I AM LYME DISEASE STRONG. 💚
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