Treatment Conundrum: Finding Balance When Living with Late-Stage Lyme and Chronic Disease
To Treat or Not to Treat? That is the Question. One of Many. If Treatment, What Modality? How Long to Treat? What if You’re Not Getting Better…???
For patients fighting long-term illness, questions and concerns regarding treatment(s) may always be present. After treating disease and symptoms for years, some cases decades, when is enough… enough? If little to no improvement, when does one allow themselves the grace to accept the path given… and stop; stop trying the latest, highly praised treatments… and simply be? Is this breaking the “never give up” rule on trying to get well, or allowing for rest… and peace… and space to breathe?
No right or wrong answers. Difficult questions and realities that I (and too many in the illness world) wrestle with — each and every time a major flare fails to ease, meaning another setback has taken hold. The older I get, the longer this fight, the harder each setback tends to knock me around — licking wounds and battle weary.
He gives strength to the weary and increases the power of the weak.
Isaiah 40:29
Treatment + Healing Update
Several months have passed since I’ve shared an update from within the confines of this illness + healing journey. Recent blatherings have had my focus elsewhere. Rumor has it there’s been a rather substantial health crisis happening in our world?!
Prayers you and your family are staying well… and safe.
Late November, 2019, I began working with a new Lyme specialist. With cautious optimism, started a new treatment protocol the first of December. Medication reminders ringing on my phone — day and night — diligently consuming pills, powders and potions as prescribed. Familiar territory. Not my first rodeo! Disciplined and hunkered down — strategically mapping out meds, detoxing like a boss, protecting my tummy (gut health is important!). Been doing all the things to support this body while riding out the killing-phases of treatment. Die-off (herxing) of the bad guys… no bueno!
By the beginning of March, I felt as though I could take a breath, at least for a minute. Glimmers of healing light were peeking through the treatment fog.
Then…
(Why must there be a “then” or “but” to mess with positive vibes? Ughh!)
Almost one month to the day of noticing hints of hopeful improvements (and shortly after adding in an herbal med per treatment protocol), I began experiencing significant adverse reactions. Not typical herxheimer reactions that occur with anti-microbial therapy. Nope. My body was definitely rejecting part of this new treatment — halting healing progress, knocking me back down. Hard. Deep sigh!
Several weeks have passed since stopping meds causing my body additional grief. Zero indications of positive momentum returning anytime soon. Aside from the tiny sparkle of healing progress (prior to this current bumpiness), there’s been a slow-yet-steady backward slide with my health — triggered by the significant setback experienced last May. Thus the search for a new Lyme specialist and possible treatment(s)… and revamped hope for improvement.
[bctt tweet=”After treating disease and symptoms for years, with little to no improvement, when is enough… enough?”]
Keeping it really real… I am presently weaker than I’ve been in years. Bed-bound most of my days and miserable — thanks to a plethora of rotating symptoms — with little reprieve. (gratefulness for any reprieve, little or otherwise!! incredibly grateful to have my loving, caring hubby home temporarily-full-time to look after of me. a selfish upside to these crazy coronavirus times.) Based upon an increase in certain symptoms, it’s possible Lyme carditis may be joining the party. Testing and time will tell. Thankful to have a Cardiologist familiar with Lyme and accompanying co-infections. (he’s from Connecticut! Score!! in case you may not know, Lyme was discovered in and named after Lyme, Connecticut.)
In summary: One tiny step forward, twenty leaps backward. Slips and stumbles in between.
Healing deja vu. For what seems like the millionth time.
Commence the rabbit hole of emotions!
When feeling multiple, complex layers of non-stop miserable — after trying sooo fiercely to get better — overwhelming emotions come in waves… taking up waaay too much precious brain-space! As if the daily focus of maintaining optimistic, joyful, grateful thought isn’t challenging enough, illness + treatment complications have to go and mess with my mess!
Not Alone (unfortunately!)
While taking a few days break between blathering thoughts (yes, it takes me days, often weeks, to complete a blog post!), I read a social media post by a friend and advocate within the Lyme community. She eloquently expressed current feelings about her treatment + healing journey. Her words described perfectly how I, and many others feel: “… burnt out on treatments and pills — natural or otherwise… feel a deep sense of treatment fatigue and an urgency to rest and accept.” — Jenny B.
Knowing when to Press Pause
If only treatments for all illness were easy. If only there were cures for all disease. If only.
We are all unique, beautiful beings. Our amazing cells, tissues, and organs work amazingly hard for us. When ill, our uniquely, amazing bodies heal and react to treatments… uniquely.
Lyme disease patients are infected with unique pathogens from the bite of a unique vector (tick, mosquito, mite, flea, fly, spider). There are over 427,000 new cases of Lyme disease diagnosed each year in the U.S. No two cases are alike. No one size fits all treatment. If diagnosed and treated early (in the acute stage) most patients fully recover. Each unique (amazingly fierce) chronic (late-stage) Lyme patient must research, locate a treating healthcare provider (knowledgeable and properly educated in vector-borne disease), follow unique treatment plans — that yes, produce unique healing results. It’s a daunting, exhausting process — often repeated (indefinitely) — especially for the severely ill.
At some point in time, each and every being fighting illness, chronic pain or injury is faced with making treatment decisions. What type of treatment is best? How long to treat? With every ponder, pros and cons are evaluated. Hope for improved quality of life weighs heavy. Ultimate goals and hope… renewed health, recovery, remission… living life to the absolute fullest.
More times than I care to recount, I’ve weighed treatment options. Hours spent researching: specialists, various treatment modalities, social media group forums… praying for that perfect “pill” to fix me!
Knowing if and when to press pause on treatment isn’t covered in the “Living with Persistent, Late-Stage Lyme and Vector-Borne Disease” manual. We, unique Lyme infested beings, are creating such “guidelines” as we stumble our way through this complicated, arduous Lyme disease journey. Hopefully creating fruitful references for future patients who may (unfortunately and sadly) find themselves on similar illness paths.
How do we know when to press pause; when is enough, enough?
Sickly beings receive treatment advice and guidance from healthcare providers. Patients research and educate themselves to the nth degree. If listening closely, our bodies tell us when it’s time to step back and breathe — when it’s time to be still.
[bctt tweet=”Acceptance of treatment fatigue + disappointment— and choosing to step back— is not giving up. It’s allowing oneself the fortitude + grace to rest.”]
This is where my body currently has me — pressing pause, once more. My head and heart have been heavy. Treatment worn and weary — physically and mentally numb and exhausted. Simply put, I’m tired.
Like many, I am praying and hoping for continued strength. Trying to be still and let God lead the way. Coping. Waiting. Resting.
“Come with me by yourselves to a quiet place and get some rest.”
Mark 6:31
In a world filled with trials and tribulations, disease, sadness, disappointment… may we never give in or lose sight of hope. May we embrace the love and blessings surrounding us — allow joy to fill our hearts.
Uplifting prayer and positive energy are with each and every beautiful being finding their way amidst struggle. May all in need of rest allow themselves such grace — moving forward… in greater stride… another day.
Breathe, lovelies. Breathe!
Until my next reflection…
Be well. Stay safe. Hold on to Hope.
Blessings and positive light — always!
—Terry xx
References
Jarisch-Herxheimer Reaction, Wikipedia— https://en.wikipedia.org/wiki/Jarisch–Herxheimer_reaction
Detox Guide: All the Best Detox Methods Ranked (Most Gentle to Least Gentle, Lady of Lyme— http://www.ladyoflyme.com/blog/detoxguide
How Do I Restore My Gut After Antibiotics?, Bill Rawls, MD— https://rawlsmd.com/health-articles/how-do-i-restore-my-gut-after-antibiotics
Lyme carditis, Centers for Disease Control and Prevention— https://www.cdc.gov/lyme/signs_symptoms/lymecarditis.html
No Set Protocol, Jennifer Crystal, Global Lyme Alliance— https://globallymealliance.org/no-set-protocol/
Why Lyme Disease Awareness is Important— https://terrymmayfield.com/why-lyme-disease-awareness-is-important/
#Life #Illness #ChronicIllness #Pain #Treatment #Lyme #LymeDisease #Rest #Grace #Hope #Healing #WellnessJourney #TurnPainIntoPurpose #MyStory
Terry Mayfield
Over here reflecting about life, illness + healing. Offering encouragement + empathy + support. Sharing smatterings of sarcasm + sass. Oozing with opinion. Speaking my truth. —tmm
18 Comments
dawn
dear warrior sister, deep in prayer with you, for you and for expedient comfort, rest, and peace… i love you.
Terry Mayfield
Thank you, Dawn. I know you know… love you!❤️
Ann
Oh, Terry. I’m so sorry for this setback. Your words and thoughts are so authentic. I’m sorry for the frustration and the weariness. Praying for your rest and patience and encouragement and wisdom. ❤️
Terry Mayfield
Thank you, Ann. (deep sigh!)❤️😘
Pam
Treatment worn and weary and you need to rest. I hope resting and pausing from treatment results in a miracle. I believe in miracles.
Terry Mayfield
Thank you, Pam. Greatly appreciate your kindness and support. Holding on to hope for a healing miracle!💖💞
Jaime
Hi Terry, I’m so sorry you are in the health state you are in right now in this crazy guinea pig feeling disease. I can’t help that SOME of listening to you, I felt like I was reading about myself. I did high dose strong multiple antibiotics, antimalarials, antiparasitic all at the same time for 5 straight years…it was pure suffering hell! I struggled even stomaching the mepron. I was on cyst busters. That all ended two years ago with a huge seizure at home, seeing the light literally. I keep thinking maybe I was just so out of it that I didn’t meet Jesus and see loved ones, but the way I felt cannot be denied. People can believe me or not.
So, long story short now I hit May 31-seizure day. Went to take my meds again when I received the okay from my LLMD. I picked up one of my meds, threw it across the counter in front of my husband and mom. I said “I’m done with this! I can’t take this anymore!” As tears stream down my face yelling out of anger of the treatment not helping, making me sick, making me rely on others, making me housebound, making me never able to spend quality time with my kids, never being able to help with housework…my Lord I could go on Terry! You know!
I’m so happy and GRATEFUL you wrote this blog post as I know how hard it must of been, because it rings so well with me right now. Not only can I help support you some but I’m entering what you just stopped and what you decided to do. Take a break, have some peace, try to feel a glimpse of wellness in between flare ups…I’m starting herbals with the same LLMD. I’m terrified. I have 2 copies of MTHFR genes. Detox is hell for me. I’ve been off treatment two yrs making this now a total of unofficially 7 yrs. You sound like you need this time off. Don’t second guess yourself. I did to an extent but not much at all. It was strange, as you mentioned something about you just KNOW. So I asked my LLMD, if your not treating me officially with antibiotics, etc, just supportive meds. What is this treatment called? Palliative care. As an RN, that was hard to hear. Doesn’t mean you’re dying but you are accepting your illness & just staying comfortable. Well after 2 yrs my flare ups are happening more often, sleeping all the time, so between my LLMD, husband and I, we’ve decided to do JUST the herbal route and only two. However very potent herbs. Prob start this week. I can only put my faith in God.
Ok I will stop “Jaime’s blathering.” Sorry I know how exhausting it is to read when you feel terrible. I’m hear for you. Reach out anytime. You can DM me or email me. I feel like we switched places for now. 🤦🏻♀️😊if I don’t smile and laugh, I will cry! I hate “hang in there,” so the Lords got you! Trust in Him as it seems you do! ♥️💚All my best. -Jay
Susan Marquardt
As you said in your own quote below, may you, in need of rest, allow yourself such grace! I and others are truly uplifting prayer and positive energy for you, and in honor of your Strength, and joy you display amid so much pain and mental struggles yet holding fast to as much hope and joy as possible.You are possibly the strongest and yet most empathetic warrior I’ve known. May you feel all the love, prayers, strength, hope and yes, GRACE sent your way. Rest whenever you must!! It too has it’s own healing way! Love Always…..
💚Your words…”In a world filled with trials and tribulations, disease, sadness, disappointment… may we never give in or lose sight of hope. May we embrace the love and blessings surrounding us— allow joy to fill our hearts.
Uplifting prayer and positive energy are with each and every beautiful being finding their way amidst struggle. May all in need of rest allow themselves such grace— moving forward… in greater stride… another day.”💚
Terry,
May grace, hope and love continue to pour into your heart daily, just as you have so generously passed it on to others!!!!!!! Once again, love you always! Susan
Terry Mayfield
Thank you, Susan… for your lovely message, kind heart, faithful prayers, constant support and love. Blessings always! Love you… 💕💖💞
Terri, Reclaiming Hope
I’m so sorry to hear you’re experiencing this setback Terry. It’s so hard when we’re going along swimmingly and then experience something like this. Praying things will settle down some for you and give you some relief, and also that you won’t have to deal with the added issue of Lyme Carditis. Blessings to you sweet friend.
Bella Adel
Sweet Terry , I’m so sorry for your suffering & think of you everyday ! Don’t forget you have all of us to fall back on .. you Def have Me!
Sending you hugs & kisses, Forever Friends ! Love 💕 you ! Bella 😘
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