Lyme disease has stolen my life away from me – not just since starting treatment but in the years of hell I endured silently prior to a correct diagnosis. I was misdiagnosed with more diseases and conditions than I can count. Because I looked (look) so “normal” and conventional doctors were out of suggestions, I was told it was my fault, that it was all in my head, while I watched helplessly as my body fell apart. I pushed myself to the limit trying to carry on a “normal” life. Even most of the people closest to me didn’t know the torment I was experiencing. By the time I was diagnosed and started treatment at 28 years old, I was intermittently having difficulty walking/talking, exhausted all the time, experiencing heart palpitations, tachycardia, memory loss, numbness/tingling in my limbs, extremely low blood pressure, dizziness, and various other neurological symptoms… The list goes on and on, but still doctor’s claimed it was all in my head.
Thousands of dollars in tests and treatment that did nothing for me later, I finally found an internist (who does not take my insurance) who was determined to help me. After thousands more in tests with him, and a particularly scary and inconclusive trip to the ER (I couldn’t walk, talk, or hold myself upright), my internist was inclined to test for Lyme disease. He said it was a “long shot” but did it anyway. I thank God he did. After receiving a correct diagnosis, I was referred to a specialist (who also does not take insurance). After more than a year of treatment, and thousands more in treatment costs, I am on a long, slow, and extremely painful road to recovery. I thank God daily that, for the first time in my life, I have a treatment plan that is actually making a difference and doctors who are incredible and relentless in their pursuit of a cure.
My heart continues to break though for those who suffer from this devastating illness without access to proper care. I found a great speech by Dr. Joseph Jemsek that talks a bit about how politicized Lyme disease has become. It’s absolutely tragic. Despite having insurance and incredible doctors, this disease has taken everything from me… every extra cent (and then some), every ounce of energy, and every last bit of normalcy. And I’m one of the lucky ones. I have the love and support of many friends and family …and yet, I still feel alone. Based on my pre-diagnosis experience and the experiences of the many other Lyme patients, I can only imagine the suffering of the countless others who are misdiagnosed, undertreated, or completely ignored by our healthcare system. Because of ignorance, arrogance, and selfishness, people are dying and suffering needlessly… and without hope. Education and awareness are the only way to change that… please watch this speech and share. Thank you.
“Victims of Lyme disease are victimized twice by this illness, first by the unending suffering attached with the illness, and second by a healthcare system that ignores them and sometimes doesn’t just ignore them. It mocks them. It ridicules them.”
-Dr. Joe Jemsek