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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71 Comments

  • Donna Falcone
    September 20, 2020 at 3:02 am Reply

    Terry, I feel your struggle here and I am so sorry…. none of this is okay. I wish I could do something to help you! I am stunned that, after all these years since I entered the Lyme ride, the situation is still so much the same for chronic lyme patients…. can’t wrap my head around that.

    • Terry Mayfield
      September 21, 2020 at 12:37 am Reply

      Donna. Thank you for your kindness and support. It is truly maddening to be in such a stagnant state, with every aspect of these diseases. Grateful for the Lyme organization that advocate on behalf of Lyme patients. How wonderful would it be to see significant change happen in our lifetime. How wrong is it that we have to fight so hard for such change. Keep taking care of you! Hugs, my friend.

  • Megan Schlueter
    September 20, 2020 at 6:07 am Reply

    So incredibly unfair…something has to change. I continue to pray for you Terry and others that suffer from this horrible disease. Hang in there sister💕

  • Susan
    September 20, 2020 at 11:41 am Reply

    My heart hurts so much for you (and for others fighting the fight), IT IS NOT FAIR!! I love you and your tenacity, tenderness, and fight. Always remember you are in our hearts and prayers!!! I’m still looking for that magic wand!! 💚💚💚💚💚💚💚💚 and sometimes tears do you have to flow, as they are often the words we don’t know how to say…

    • Terry Mayfield
      September 21, 2020 at 12:42 am Reply

      Sending sooo much love to you and Johnny. Miss your faces!! I feel your prayers and loving support. Always. Hugs each other for me/us. Please take care. And, let me know if you ever find that magic wand!🤩 Love you!❤️🙏🥰

  • Carol
    September 21, 2020 at 6:49 pm Reply

    Terry, my heart aches for you and all the others going thru this awful disease…. I, too, wish I could take away all your pain, sadness, misery and all that you go thru. Continued prayers for you to be blessed with a cure for Lyme disease that you continue to fight. I, only pray that if I am faced with something like you have been for so many,(to many), years that I will
    be able to be half the lady that you are. You are in my prayers each and everyday!! Sending love, hugs and prayers to you sweet and beautiful lady.

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    I was diagnosed with Lyme disease 5 years ago and was taking Antibiotics and Nonsteroidal anti-Inflammatory drug which seemed to help. However, I still suffer from some of the symptoms. My symptoms have always been chronic fatigue, joint pain, and even neurological problems in controlling hand and leg movements. I am a 54 year old female. the Antibiotics wasn’t really working and I could not tolerate them for long due to severe side effects, There has been little if any progress in finding a cure or reliable treatment. Acupuncture eased my anxiety a bit. Our primary physician recommended me to kycuyu health clinic and their amazing Lyme treatment. My symptoms including chronic fatigue, joint pain and rash, disappeared after 4 months treatment! The herbal treatment is a sensation.. My Lyme disease is totally reversed! this is a herbal store that will be leaving it’s footprint in this world. I’m 54 and have never been this healthier

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