A Colorful Journey through Life with Lyme Disease and Chronic Illness
A Lyme Disease Awareness Story
My 45-Year Illness + Healing Journey
(approx. 10 min. read)
In the beautiful countryside of southwest Missouri — small town America, population under 1,000 — that’s where I grew up. Our family homestead sat on 15 acres of woodlands, with a few head of cattle, abundant vegetable gardens, fruit and nut trees peppered about. For a period of time, beautiful registered quarter horses, a shetland pony and a few other equines knew our fields to be home. Anywhere from two to four dogs roamed the property over the years, keeping a watchful eye.
All of the above — amazing animals to love and take care of, acres of dense woods and fields to roam — provided more than enough to keep a tomboy like me busy and entertained. Especially throughout the summer months (while also providing a perfect tick and vector haven!).
During my adolescent to early teen years, summer break would find me outside from morning chores until long after the sun would set (something many kids of today may not be able to visualize, nor truly appreciate). Rarely a hot summer day would pass without mosquito (and or chigger) bites. A tick (or several) often hitched a ride, as well. (when out in nature, even your backyard, ticks can and will find you. it’s what they do!) I remember several occasions where a tick would be attached, locked-in for feeding time — and not where easily visible. We diligently performed tick checks from head to toe each night, and those nasty blood-sucking arthropods could hide — in my hair, behind my ears, back of my neck, waistband area, bend of my knees, armpits, even my belly button! I’m creeping myself out simply remembering how many ticks attached themselves to me as a kid. Ughhh! (friendly reminder, ticks can and will hide — anywhere!)
Truth be had, we never really thought much of ticks, other than they were a nuisance… and everywhere! (Yes, naysayers/CDC. Ticks were in SW Missouri back in the late ’70’s, and remain there today, because, ticks. are. everywhere!) We used tweezers to remove ticks, most of the time. Fingers seemed much more convenient. Today I absolutely cringe at that thought.
PSA: Please use tweezers or a proper tick removal tool to remove ticks — always! AND, save the tick to be tested. See the following link: Proper Tick Removal Info.
Enjoy every possible moment out in nature, daily, if life allows. Simply be smart and “Tick Aware”. Keep every member of your family safe, pets too. Click the following link, because: Prevention is key!
Not an Average “Bug” Bite
In the summer of 1977, a bite surrounded by a large red rash (not a bullseye) appeared on my right thigh. The timeline is a little foggy regarding how quickly after the bite sickness set in, but I remember the specific symptoms as if it were yesterday. Unquestionably a traumatic experience for a ten-year-old, the rippling effect (of what did and did not happen) 45 years ago has lasted throughout my lifetime.
What was (I am guessing) a relatively short time period after noticing the bite and rash, I became miserably ill. I remember one late summer night, my father carrying me from my bed to the car, then into our neighboring town’s hospital emergency room. A frightening time, but think I was too sick to realize I should have been scared. Hospitalized with a 105-degree fever, delirium, severe flu-like symptoms: nausea, vomiting, debilitating fatigue, excruciating headache, body aches and pain deep into my bones.
Treated with penicillin for what my doctor insisted was a brown recluse spider bite, and after a few days in the hospital I was sent on my merry way. Basically with a pat on the head.
Why would anyone have doubted the diagnosis or treatment? I was in the hospital, after all, and the doctor said I was “good to go”. I must have been okay. Right?!
Little was known about Lyme disease in the late ’70’s, especially in the Midwest. There were no blood tests (reliable or otherwise) for tick-borne diseases at that time.
Unfortunately, I remained sickly, “flu-ish” and stuck in bed most of summer vacation that year. (no fun for kids to be sick, ever, from any illness. but, if a child or yourself become sick with the “flu” during the summer… chances are high it’s not simply “the flu”! — Signs + Symptoms of Lyme Disease)
My Normal (aka Warning Signs)
Daycare centers, classrooms, cafeterias, locker rooms — all petri dishes filled with germs! And like most kids, I caught every bug being passed around. However, the frequency and severity of my not feeling well grew worrisome for my parents. Diagnosed with strep throat, the flu, pneumonia, mononucleosis (mono), etc., on a recurring/revolving basis throughout my elementary and junior high years. A common cold would knock me down in bed for several days, sometimes weeks at a time. Fuzziness (what we now call brain fog) and severe headaches were almost a daily occurrence, and continued into my high school years.
To treat the various on-going and persistent infections, I was given prescription after prescription of whatever antibiotic Big Pharma was peddling at the time. My flu-like symptoms would eventually subside, and I pushed forward. I didn’t know any different — and on the outside, acted like any normal kid and teen. Not feeling great was normal… to me!
Juvenile Arthritis?
A constant symptom which seemed impossible to shake — deep bone pain in my legs down to my toes, arms and fingers. I cried myself to sleep most nights.
Bless my mother! She would massage my legs and arms with Ben-Gay (gag!), followed with a teaspoon of crushed aspirin, mixed with a little sugar and water as my nightcap. This was our ritual almost nightly, right before she left for work. (think the nasty stench of Ben-Gay lingers today!🤢) On nights when feeling poorly and running a fever, my mother would tuck me in a hospital bed while she worked her 11pm–7am shift. (blessings of a small town hospital, years ago!)
Determined to understand the cause of my persistent sickliness and excruciating pain, the doctor visits multiplied, to no avail. We were brushed off, told I must simply be “prone to getting sick”. My pain was diagnosed as “growing pains” and a result of vigorous sports activities.
REALLY?! Prone to getting sick?!! Growing pains?!
Such a brush-off and vague diagnosis wouldn’t — or shouldn’t — stand today, nor be given by any pediatrician. Hopefully!
Mono + Migraines + R.A.
Pushing through bouts of chronic illness continued throughout my 20’s and early 30’s. Specialist after specialist consultations and testing. Treated with a general 10–14 day course of antibiotics, for various unspecified infections knocking me down. There were several occurrences when I had to take medical leaves from university studies and work due to reoccurring “mono”. (still grateful to this day for understanding professors and an amazing employer.)
Resiliency remained — health bumps were the norm. Once these 6–8 week “mono” bouts would pass, I returned to work and continued running + training. Due to medical bills adding up (even with great insurance) and the emotional stress of trying to do all the things while fighting off illness, I chose (had) to put university studies on permanent hold. I was grateful for my job, enjoyed my work… and really disliked the stress + commute of night classes!! (would have loved the advantage of today’s online options.)
Headaches that I’d had since childhood evolved into debilitating (unable to function, horizontal in complete darkness and quiet) migraines. (challenging when at work!) Neurological work-ups led to multiple medications becoming a daily routine. Pain meds on top of pain meds, suppressants, anti-seizure medications, and emergency room visits for Imitrex injections. Then came Stadol (butorphanol tartrate) nasal spray. That opioid was quite the ride, but highly effective, as it was the only pain medication that could knock-out my miserable, debilitating migraines. I’ve dealt with a fair amount of illness and pain over the years. Would never wish chronic, severe migraines upon anyone. Ever!
Along with negotiating life — balancing medications + needing to function as a productive member of society — I was apparently still “growing.” Deep bone pain remained prevalent and excruciating. (pretty sure this pain was never just “growing pains”) My then rheumatologist diagnosed me with rheumatoid arthritis (RA), and presumed I had had juvenile arthritis since a child, which began after the bite “incident.”
Quick Recap
Known tick attachment and severe onset flu-like illness, joint swelling and deep bone pain, reoccurring “mono”, brain fog and severe migraines — all accumulative and sustained symptoms from 1977 through early 1990’s. Yet no discussion of possible Lyme disease infection. Not once! — ???
I hope and pray in today’s vector-borne disease climate, physicians worth their medical degrees and certifications would be connecting the dots!
Endometriosis
One of the more challenging and painful chronic health hurdles faced during my early maturing female life was endometriosis, beginning my senior year in high school. Lower back pain thought to have been caused by a sports injury prompted visits to a chiropractor. One afternoon, doubled over in pain, an emergency room visit soon followed. Local (small town) physician examinations revealed “lady parts” issues. Severe lower back pain… not my back! Was urgently referred to a GYN in the “big city.”
I had always had extremely painful menstrual cycles, never once thought twice about the severity of pain. Once again, this was my normal.
Following an excruciating examination with new big city GYN, immediate surgery was scheduled. So, at seventeen, had major surgery to remove an ovarian cyst the size of a softball. (still remember waking up to a lovely eight-inch row of staples across my lower abdomen.)
Over the next ten years I underwent seven laparoscopic surgeries to remove aggressively growing and painful endometrial tissue and adhesions “gluing” my insides together… literally! Each surgery whittled away my ovaries, leaving behind a road map of external scars and internal scar tissue.
Before my seventh surgery (in 1994), my new (bigger, big city) GYN advised a six-month round of Lupron Depot injections — to induce medical menopause. (every 26 year old’s dream!) This was an attempt to reverse the severity of endometrial symptoms… and… a colossal fail! This fun “experiment” accomplished nothing, except to make me (and everyone around me) even more miserable… for nine long months. Residual effect of this treatment offered an additional “bonus” three months of lingering menopausal symptoms. Yay me! (and my poor, not-yet-hubby beau… and he still stayed with me!)
The hoops one must go through for insurance to cover medically necessary treatments. Also known as checking-off the boxes, one-by-one, of guidelines set forth by pencil-pushing advisory boards.
But I digress…
As a result of treating this disease (and the numerous surgeries needed), having children simply wasn’t meant to be. In an attempt to end my painful endometrial suffering once and for all, a few short months post-Lupron, my GYN and I agreed to a complete hysterectomy. A surreal reality for a childless 27-year-old young woman. A reality that didn’t really hit until later in life. (and a sadness that never truly goes away…)
Ticking Time Bomb
Combine all of the above with the following: years of a high-stress work life and career, dedication to being as fit and “healthy” as possible, running at (an amateur) competitive level, continually pushing myself to the maximum limit day after day. And, because pushing forward at full-speed-ahead was my modus operandi, I failed to recognize my immune system was beaten down, weakened, and over-stressed.
Little did I know, there was a ticking time bomb inside of me about to explode. Evil Lyme spirochete (bacterium Borrelia burgdoferi) were reproducing, invading, and literally corkscrewing their way into every organ and tissue in my body, wreaking havoc.
In the Fall of ‘99, another relentless “virus” knocked me down. I tried with the same will and might pulled-from during previous crashes + recoveries, but this time was different. There was no bouncing back to be willed. (let’s just say, I was not partying like it was 1999!)
Days of feeling beyond lousy with severe flu-like symptoms turned into weeks. I could barely crawl out of bed to go to work. Added stress of knowing people counted on me only exacerbated my illness. I had responsibilities. Not like saving the world kind of responsibilities, but I had a relatively important, executive position that required me to be present and able to function. (you know, like most working environments)
Physically getting to the office became a challenge. Add in brain fog, blurry vision, debilitating migraines, and unrelenting fatigue. I was losing a concerning amount of weight. Running and training became impossible. Social activities ceased all together. Eventually my body simply shut down, and by January 2000, I was completely bedridden. My weight dropped to 83 pounds — I am 5’8″ and was a strong athlete. Emphasis on ‘was.’ The person I used to be was withering away. Emergency room visits. Hospital stays. Countless vials of blood drawn and diagnostic testing from head to toe. Included within the plethora of blood tests were multiple Lyme disease tests. All negative. Correction, false negatives*!!
As a result of being bedridden for months, unable to function much less work, I was left with little choice but to resign my position. The career I had worked so hard to achieve, with much more yet to accomplish, came to a complete and unwarranted, unwanted end at the age of 33.
The independent, strong-willed, workaholic, fanatically fit, active, fun, I am woman hear me roar person… vanished.
Frequent late night emergency room visits ensued. Specialist and hospital, after specialist and hospital. Testing, testing, and more testing. No one seemed to know for certain what was wrong with me. Diagnoses given: Severe Migraines, Depression, Lupus, Fibromyalgia, Chronic Fatigue Syndrome, early stage Multiple Sclerosis, Rheumatoid Arthritis — to list only a few. One of my fave diagnoses, “stress!” (Umm, yeah, I was stressed. And Depressed. And Fatigued. And in Pain. I. Was. Sick!!!)
All of these diagnoses — were they simply mouth service, loosely given merely to appease more than clearly identify the why’s, where for’s, and how to’s of a patient’s debilitating symptoms?
Possibly frustrated physicians wanting to rid themselves of a difficult-to-diagnose and treat patient?
Rhetorical questions. (And immensely infuriating, thinking back to what I personally experienced with each medical encounter — then and even still today. Knowing that other Lyme disease patients have had similar experiences. At a loss for the right words to express!)
Challenging + Frightening Times
There were times when my husband had to carry me up our stairs. I was completely dependent upon him (and my family) for everything; had to be helped to the bathroom, fed, bathed, dressed. Shackled to my bed by this mysterious invisible illness. My body… I … was continuing to fade away. The fear of dying was quite real. And frightening.
Some serious prayer action took place. I am, and will always be, forever grateful to all of my prayer warriors.
Most assuredly thankful for a specialist referral that wasn’t a complete waste of time, precious energy, or money. A doctor who actually seemed to “get it” — why I was sooo miserably ill.
FINALLY! (yes, an elevated voice… plus a really deep sigh)
Diagnosis
In 2000, after an extended search and wait, I was referred to an infectious disease (ID) specialist in Kansas City, MO. A physician, who (at the time) happened to be one of the top Lyme Literate Physicians (LLMD) in the nation. I was diagnosed officially with Lyme disease in 2002 — two years after falling terribly ill. Only after this ID doc sought outside testing through a specialty lab, IGeneX. Multiple false negative CDC tests through several different labs, but the test from IGeneX was “one of the most positive results for Lyme” my physician had ever been presented. (well, thanks very little CDC/ELISA* testing!)
Relieved! I finally knew, after all of those years — decades — what was causing me to be so unexplainably and chronically ill. Hard part over. Easy peasy now. I’ll take a few pills and get back to “normal“ in no time.
If only this could have been the case.
Correct diagnosis took 25 years, but my health challenges were far from over. This Lyme disease journey and battle for wellness was merely beginning.
“If only” and “what if” — I had been properly diagnosed and treated when the original tick bite occurred in 1977. Or anytime before my body crashed in 2000. Perhaps my health journey would have been different. Perhaps my Lyme relapse would not have happened at all. Perhaps I would still be the fiercely driven, executive, athletic, fireball of a woman I used to be.
Currently 55, my struggle and fight for improved health continues. Every. Single. Day.
Treatments
Throughout the past 22-years, I’ve been under the care of multiple allopathic specialists, integrative, and naturopathic physicians. Within the last few years, additional diagnoses of Babesiosis, Bartonella, Mycoplasma, Ehrlichiosis, Rickettsia, Mast Cell Activation Syndrome (MCAS), Chronic Inflammatory Response Syndrome (CIRS) — mold + biotoxin illness have accumulated. Specialty testing has also revealed multiple gene mutations and predispositions, which add even more to this challenging, healing puzzle. Various antibiotic and herbal protocols have been followed, extensively — each pill, powder, potion, injection and/or IV — bringing with, additional misery and suffering — killing and herxing. Disciplined diet is part of daily life, as well, with constant adjustments based upon allergies and ever-evolving, extreme sensitivities (thanks MCAS!). Detox, acupuncture, lymphatic massage, gentle exercise (extremely rare, but when able). Rest, rest, and more rest. All on Repeat.
In 2017, research (and timing) lead my husband and I toward Stem Cell Therapy. In August of that year I received SVF stem cell therapy, then early March 2019, received additional treatments — Exosomes (derived from placental stem cells). Peptide therapy was added, as well, to help address excessive inflammation caused by MCAS and lingering symptoms — damage accumulation of living decades with Lyme and co-infections.
Throughout my stem cells + exosomes + peptides treatments, I shared regular updates to my blog, tracking the healing progression. This therapy was (and is) considered experimental. As with all treatments for any disease — there are no guarantees. After fighting for decades to regain my health, this was a leap of faith my husband and I were willing to take.
Stem cell therapy was a bumpy 20+ month healing process. By April 2019, I was beyond grateful to be experiencing significant improvements — referred to as my happy dance healing happenings!. Unfortunately, this joyous, positive and forward momentum was incredibly short-lived; a non-Lyme-related health issue caused a relapse in May 2019. This setback was so significant that most (if not all) substantial improvements gained were negated. Needless to say, I was devastated. Bedridden once more… miserable… and… barely holding it together.
Lab results indicated Lyme was/is more than likely still quite present. The search (once more) for guidance and renewed treatment path commenced. (In case you were wondering, these diseases are indeed persistent, overwhelming and beyond maddening to treat!)
In late November 2019 (for what seemed like the zillionth time) I began working with a new physician, a naturopath, and tailored herbal therapies to re-address Lyme, co-infections and underlying genetic issues. I was truly grateful and encouraged by improvements, but almost like clockwork, a backward slide happened — I experienced adverse reactions to the herbal therapies. Because of MCAS, my body is hyper-sensitive — to everything it seems — and was incredibly reactionary to that particular treatment protocol. This experience was beyond frustrating… and deflating. Treatment exhaustion set in, prompting me to press pause with respect to treatments and this every-changing search for wellness.
I share more on this part of my journey here: Treatment Conundrum: Finding Balance when Living with Lyme Disease and Chronic Illness
After taking a treatment sabbatical mid-year 2019, my health continued to decline. Became bedridden once again — miserable with debilitating and overwhelming symptoms. Not treating was no longer an option.
Consultations with my integrative M.D. (September – December 2020), provided new hope/ direction on trying to identify (all-??) root causes of why I continue to remain so relentlessly sick. (Not an easy, swift, nor inexpensive task.) After months of specialized testing, mycotoxins + endotoxins were identified as primary area of concern, in addition to Lyme+. Have slowly re-introduced binders into my daily protocol — to help with expelling mycotoxins + endotoxins, as well as peptide therapy to help re-address inflammation.
My Here and Now
September 2021 brought Covid into our home. This ‘Dance with Delta’ wasn’t the best for healing progression (lol!) but my L.A. doc began tweaking treatments immediately. And From the beginning of 2022, we continue adjusting therapies as needed, every other month. Hope to share more detailed information regarding specific treatments in future blog postings. For now will share, protocol includes Ivermectin (to help kill off any long covid possibilities while addressing parasites. (win. win.), MethyleneBlue to address Lyme+, along with a lengthy inventory of supportive therapies.
A return visit to Los Angeles for additional exosomes and supplemental therapies is high on the hopeful-treatment list. If only Integrative therapies — that offer incredible healing properties, help calm excessive inflammation and provide my body with a much needed boost — were covered by insurance!
Definitely determined to keep chipping away at root causes, one by one — if one is ever truly able to identify every. root. cause. of one’s chronic complex illnesses?! Deep sigh!
One aspect I know for certain, my faith holds strong, as does my hope for continued healing and improved quality of life. Slow and steady we go. One day at a time. One breath at a time.
Per my norm. I am Holding on to Hope!
Illness + healing = a nonlinear, often complex and “colorful” journey!
With over 300 strains of Borrelia burgdorferi worldwide [ILADS.org] there remains no cure, no one treatment. Because each of our bodies are so unique, finding the right specialist and treatment protocol(s) takes painstaking research, often years (sometimes decades) of trial and error.
The past 22 years of this 45 year Lyme disease and chronic, complex illness path has been exhausting… and expensive. A hardship no one should have to endure, definitely not at the hand of unreliable testing and a disease caught in the middle of world-wide madness, controversy, and debate.
My hope is for others (especially innocent children) to be spared years of constant pain, suffering, and a lifetime of chronic illness. I pray the debilitating, life-altering challenges that can follow these diseases… don’t!
To all who are fighting their own way through the various colors (depths) of Lyme, vector-borne disease, illness of any type — I pray for your strength and determination — may you find your path to renewed health.
Thank you for taking the time to read my story — a colorful life with Lyme disease and chronic illness — my healing journey.
If you have Lyme or any tick/ vector-borne disease, or know someone fighting for improved health and remission, please share your/their story! You never know who you may be helping along the way.
Spreading awareness about illness and life struggles offers enlightenment and support to others, especially those who may be on a similar journey.
Find your outlet. Share your voice!
Click the following link to read: Why Lyme Disease Awareness is Important
Reference:
#Lyme #LymeDisease #ChronicLymeDisease #TickborneDisease #Babesia #Babesiosis #Bartonella #Bartonellosis #Mycoplasma #Ehrlicia #Ehrlichiosis #Rickettsia #MastCellActivationSyndrome #MCAS #MoldIllness #CIRS #Endometriosis #ChronicFatigueSyndrome #MECFS #ChronicIllness #Depression #Anxiety #MentalHealth #MyStory