Blog post,  Chronic Illness,  Lyme Disease

Lyme Disease — Patient Plead with a Side of Rant

September 19, 2020

Experiencing various levels of Lyme late one night, I shared segments of the following reflections 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 has been 21-years since my health (and life) was turned upside down due to illness. Debilitating illness caused by: a) relapse of Lyme disease that had been in remission? b) another tick bite, armed with a heavy arsenal of co-infections? c) mold illness combined with re-activated Lyme + tick-borne diseases? d) all of the above? Highly doubtful I will ever know for certain the exact cause(s). I can, however, firmly attest the fight for renewed health has been quite long and arduous — and currently lacking the slightest glimmer of end in sight.

Patients suffering with persistent, life-altering symptoms due to Lyme disease (and host of co-infections and/or auto-immune conditions) feel so abandoned by their healthcare systems; left to research on their own for physicians knowledgeable in the realm of late-stage, persistent Lyme[1] and tick-borne diseases. Primary care physicians (most physicians in general) are rarely well-versed in anything more in-depth than acute Lyme disease. Healthcare providers often 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, holistic… uncertain of which treatment is the most effective and safest modality; forced to become their own advocates and healthcare advisors.

[bctt tweet=”Lyme disease patients suffering with persistent infections, debilitating, chronic symptoms feel so abandoned by their healthcare systems, and often by family + friends. —tmm”]

How is this ok?

There are Lyme disease specialists and ILADS** educated physicians. However, many of these providers have their fees set at levels that are simply cost prohibitive for the majority of Lyme+ patients — left to pay out of pocket for the care they/we desperately need.

If money is no object, then I suppose one is good to go. Unfortunately, Lyme+ disease does not discriminate based upon one’s financial portfolio!

And, in case anyone is wondering why patients are ‘left to pay out of pocket’, it’s due to limiting guidelines* set forth by the Centers for Disease Control (CDC), Infectious Disease Society of America (ISDA), and other regulatory agencies that healthcare providers abide by, depending upon residing country.

Single payor insurance isn’t the save-all answer, either. Not when governing medical institutions refuse to acknowledge the existence of a disease!

If nothing else comes of this calamity known as the COVID-19 pandemic, the general (healthy) public is becoming aware of how politically (and monetarily) driven the CDC, World Health Organization (WHO), National Institute of Health (NIH), et al. are… and have been for decades (dating back to the AIDS pandemic of the 1980’s — do some research!). It is beyond despicable. And yes, strong opinion. Based upon years of witnessing from within the ropes.

[bctt tweet=”Patients with chronic Lyme must research and advocate for themselves in order to receive proper medical treatment, left with mounting medical fees — not covered insurance. —tmm”]

How is any of this ok?!!?

As I’ve shared in previous reflections, my personal fight has been (and is) quite trying, and at times incredibly overwhelming.

This. Is. All. So. Flipping. Exhausting.

Like too many on a similar path, we (the sickly) are truly sick and tired of being sick and tired; miserable, coping with relentless symptoms, bedridden, housebound (“long-haulers” long before COVID-19) — desperately clinging to hope… and faith… and one another.

Surely better days are ahead. Yes?!

Tears rolling down my face as these thoughts are written. Sharing for all who “get it”… and know all too well 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…

Blessings, love and light are with you, lovelies. Always.

—terry xx

References:

* Centers for Disease Control and Prevention (CDC), Lyme Treatment

** ILADS – International Lyme and Associated Diseases Society

[1] Evidence Of Persistence Of Lyme Disease In Humans

#LymeDisease #TickborneIllness #ChronicIllness #Lyme

Over here reflecting about life, illness + healing. Offering encouragement + empathy + support. Sharing smatterings of sarcasm + sass. Oozing with opinion. Speaking my truth. —tmm

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