I have Chronic Lyme Disease (excuse me… Post-treatment Lyme Disease Syndrome). Whether this “syndrome” is actually caused by a recurrent infection of the Lyme Disease bacteria and its co-infections or by lingering symptoms that are the result of residual damage to tissues and the immune system that occurred during the infection, really doesn’t matter much to me – I could give a sh*t. What matters to me, is that this condition does exist and simply will not leave my damaged body.
The term “chronic Lyme Disease” is a hot button topic among doctors. Many will not acknowledge the fact that this condition persists in so many people. Instead, they spend their time hypothesizing why we feel this way, spewing forth reasons as to why this condition cannot possibly exist and egregiously diagnosing many patients as being “crazy” when their symptoms linger for years. In the meantime, the ever-growing group of Chronic Lymies stay stuck in the middle of this tug-of-war. Some control their symptoms, most suffer in silence… waiting. Waiting for the “experts” to agree… on something… anything… that mimics some semblance of a diagnosis.
We are not crazy.
We are truly sick.
And we are invisible.
While I am making progress, and many of my symptoms have have diminished, I am still plagued by:
- Intermittent overwhelming fatigue
- Neck pain
- Knee pain
- Muscle soreness
- Migrating joint pain
Why the b*tch-fest, you may ask? The most obvious reason is I’m sick and tired of being sick and tired. But I’m even more sick and tired of being caught in the middle of a controversy that relied on unethical guidelines put forth by IDSA, puts a premium on doctors’ egos, gives power to politicians who are completely ignorant about the disease and leaves the true victims to languish while these “experts” continue with their medical diarrhea of the mouth, debating if we are truly sick or not.
In the meantime, I did what any sane person would do… I went and got a tattoo. It’s my way of reclaiming some of the power that this damn disease has stolen from me. I may struggle for days, weeks and even months at a time, but I will not be defeated.
Lyme Disease is the fastest growing vector-borne, infectious disease in the United States. The most common blood tests used to diagnose Lyme Disease, the Western Blot and ELISA are extremely unreliable. Fewer than 50% of people diagnosed with Lyme Disease developed the classic “bull’s-eye” rash. If you feel you have Lyme Disease and your doctor does not treat you or your symptoms persist after treatment, do not be afraid to get a second or third opinion and seek treatment from a Lyme-literate doctor. Most of all, educate yourself and your family about Lyme Disease. Visits ILADS.ORG for important information.