https://terrymmayfield.com/lyme-disease-patient-plead-with-a-side-of-rant/
LYME DISEASE — PATIENT PLEAD WITH A SIDE OF RANT
September 19, 2020
Experiencing various levels of Lyme, vulnerable and weary, I recently shared segments of the following reflection with Twitterland. Thoughts and feelings simply needing to be released. Emotions completely relatable to many. Too many.
Lyme Disease Plead with a Side of Rant
It’s been 21-years since my health and life were turned upside down by illness. A relapse of disease that had been in remission? A new tick bite with heavy arsenal of infections? Combination of both scenarios? Doubt I will ever know for certain. I can, however, firmly attest this fight for renewed health has been long and arduous — currently lacking even a glimmer of end in sight.
Patients suffering with persistent infections, debilitating, chronic symptoms due to Lyme disease (and host of co-infections and auto-immune conditions) feel so abandoned by their healthcare systems; often left to research on their/our own for physicians knowledgeable in the realm of late-stage, persistent Lyme(+) and tick-borne diseases. Primary care physicians (most physicians in general) are rarely well-versed in anything more in-depth than acute Lyme disease. Most healthcare providers fail to acknowledge persistent infection past a single dose of antibiotic treatment.*
Patients, desperate to find wellness, sift through what seems like endless treatment options (conventional modern/allopathic, integrative, functional, naturopathic) — uncertain of which treatment is the most effective, safest modality; forced to become their/our own advocates and healthcare advisors.
How is this ok?
There are Lyme disease specialists and ILADS** educated physicians. However, many of these providers price their “patient services” completely out of realistic range of affordability for the average patient. How is that not “doing harm”? — when patients in need (left to pay out of pocket) can’t afford necessary care they/we are desperately in need of receiving.
And, in case anyone is wondering why patients are “left to pay out of pocket” — it’s due to guidelines* set forth by the Centers for Disease Control (CDC), Infectious Disease Society of America (ISDA) and other agencies that healthcare providers abide by, depending upon residing country.
If nothing else comes from the calamity known as the COVID-19 pandemic, the general (healthy) public is becoming aware of how politically/monetarily driven the CDC and World Health Organization (WHO) are, and have been for decades (dating back to the AIDS pandemic in the 1980’s). It’s beyond despicable. And yes, strong opinion. Based upon years of witnessing from within the ropes.
How is any of this ok?!!?
As I’ve shared in previous reflections, my personal fight is quite trying, and at times, incredibly overwhelming. I. Am. So. Flipping. Exhausted. (goodness knows my husband has to be beyond exhausted from propping me up all these years. not quite what he signed up for!)
Like too many on a similar path, we (the sickly) are truly sick and tired of being sick and tired — miserable, plagued with relentless symptoms, bedridden, housebound (long before COVID-19) — desperately clinging to hope and faith. Surely better days are ahead?
Tears flow down my face as these thoughts are written. Sharing for all who “get it”, and sadly, feel these feels. I pray for your/our strength. True healing for all in need is the ultimate prayer and hope. Praying and pleading for guidance… this fight is so hard.
May we all find our way!
Until my next Reflection…
Terry M. Mayfield
*Used with permission*
Madison Area Lyme Support Group 