Tick Tock: CDC Takes Its Time Treating Chronic Lyme Disease
My knees buckled beneath the weight of my malnourished adolescent frame. Cold, dripping sweat met its match on the tile floor. Every ounce of strength I had cried out to my parents for help. I didn’t stay conscious long enough to realize they raced up the stairs at the sound of my fall, as if on command.
The year was 2018. Losing consciousness was among the everyday occurrences in my middle-class household in suburban West Hartford, Connecticut. Life had been this way since July 5, 2017, just days before my 17th birthday, when my legs went fully numb during a run.
Not until I was almost 20 years old was I diagnosed with chronic and neurological Lyme disease — 16 strains of it, to be precise.
I blame this delay in diagnosis on the Centers for Disease Control and Prevention (CDC)’s refusal to recognize and legitimize chronic Lyme disease. Whereas many patients with Lyme disease can recover after two to four weeks of antibiotics, others, like me, suffer long-term side effects, and no one knows why. This lack of understanding makes it difficult for any medical professional to treat me in a Lyme-specific manner. Doctors are often reluctant to acknowledge Lyme as a possible diagnosis, and are not sufficiently informed to identify symptoms.
Lyme disease is caused by a bacteria that’s spread through tick bites. If left untreated, the bacteria can affect a person’s joints, heart, and nervous system.
Tests for Lyme disease are unreliable, often producing negative results despite patients later discovering they carry upwards of 5, 10, or 16 strains of Lyme-causing bacteria. There is no proven “cure” or treatment plan for chronic Lyme disease. Stringent criteria are required by the CDC to be diagnosed with the disease, and patients are often passed off to other autoimmune or psychiatric diagnoses. (See link for article)
Another harrowing story. Fortunately, there’s a good ending as the patient got to an experienced Lyme literate doctor (LLMD) for appropriate treatment. This really is key. Unfortunately, insurance will typically not cover this kind of treatment due to polarity within the medical community so patients must pay out of pocket. It’s important to understand the sordid backstory to this in order to understand that attempting to get help from mainstream medicine is like shouting at the mountain. If you are able – GO AROUND THE MOUNTAIN. It will save you a lot of time, money, and heart-ache in the end.