I’ve been putting off writing this story for a long
time. For the past 4 years I’ve lived,
breathed and been consumed by an illness so complicated and convoluted, that
sharing my story has been a complex challenge.
Following a very successful and accomplished year in 2010, I could not
ignore that something was markedly amiss. I was exhausted, I was frustrated; I felt less
like myself than I ever had. Over the
past 4 years, I’ve dug down to unimaginable depths, turned myself inside out in
fury and desperation, teetered on the precipice of no return, and finally
unearthed the entombed source of my malaise. I share my story, not only to recount my
experience, but also to help educate others…
My symptoms came on very gradually
– so gradually, that it took years before I realized that I was truly sick. I have always been an athletic, active,
motivated and very determined person. If
my plate wasn't 100% full, I would set a challenging goal or take on another
activity, always operating at max capacity. Sports have always been my first love, and
competition fueled me. I was a Division
I NCAA All-American in cross country during my undergraduate years. Upon moving to Colorado, I took up cycling,
where I soon became very accomplished, winning several mountain bike XC state
championships, and earning 2nd place at XC Nationals. In 2007, I married a remarkable man, Chris,
the love of my life. I had decided to
change careers and began graduate school to earn my Doctorate of Physical
Therapy. Life was great and I was on my
way to achieving my goals and dreams.
Fall 2009
“… I wish I didn’t
know now what I didn’t know then… I wish I could start this whole thing over
again…”
― Toby Keith
In hindsight, the seams began to
unravel in late 2009. I was in the
trenches of my last year of grad school, fulfilling an 8-week clinical
affiliation in Casper, WY. While staying
with extended family members at their rural home, I befriended one of the
semi-feral cats that hung around, picking it up, holding it and petting it
numerous times. I never saw the tick,
and never observed a rash. However,
within the next few months, the dominos inside my body began to steadily
topple. While my hypothesis can never be
proven, my gut instinct tells me that unbeknownst to me at the time, my
affection for that scraggly feline imparted on me the most bizarre and stealthy
saboteur.
Winter/Spring 2010
Early 2010, I got a bad case of the
"flu," that left me wrecked for 5 days with intense fever and chills,
sore throat, headache, and body aches. Even
though I could barely get out of bed I didn’t go to the doctor, instead shrugging
it off as another stress-induced complication of finishing my graduate studies.
Chris had been assigned to a 13-month
project, moving to Anaconda, MT, with few, infrequent visits to return
home. But even in the weeks before the
“flu” and particularly after, I just didn’t feel right. An unusual fatigue set in – I’d wake up
feeling like I had not slept, even after a full night's sleep, I had increasing
difficulty recovering from a workout, a bike ride, or a run – even if it had
been very easy – and my muscles were extremely sore and achy for days after. Intense headaches took hold, ones that did not
abate with ibuprofen. I felt anxious and
jittery, something I had never experienced. I had near-constant abdominal pain, bloating,
and digestion changes. I acquired
strange food sensitivities that I’d never had. Worst of all I developed sudden severe
insomnia, where I did not sleep more than 4 hours per night for 10 straight
months (despite taking over-the-counter and prescription medications). Even so, I soldiered on without significant
concern that something was wrong, as graduation was just around the corner.
Summer 2010
As summer approached, I began ramping
up for my favorite activity, riding and racing my mountain bike, yet I could
not shake the cluster of puzzling ailments that continued to haunt me. The few races that I completed just
annihilated me like never before – I felt incredibly weak, dizzy, lightheaded,
nauseous – I thought I was suffering altitude sickness. By the end of summer I could only ride a
couple times per week. Each ride became
a scenario of diminishing returns, the fatigue intensifying and taking me
another week or two to recover. I lost
weight rapidly, and I was exhausted all the time. I sought help from my family doctor; she
diagnosed me with chronic fatigue syndrome (CFS) and irritable bowel syndrome
(IBS), in her opinion resulting from too much exercise and the stress of grad
school. Although I’d rarely been sick
during my adult life, I accepted her assumption that I was significantly
run-down after 3 years’ worth of exams, projects, late nights, and stress.
Fall 2010
“… Yeah runnin’ down a
dream, that never would come to me. Workin’ on a mystery, goin’ wherever it
leads…”
― Tom Petty
I took the next couple months off, putting
the job search on hold, just focusing on studying for the PT board exam. I felt a little better; I was resting more, I
began sleeping again, and I thought that maybe I had been over-training on the
bike and stressing myself out too much after all. Encouraged and my faith renewed, I got back on
the bike, training for my favorite sport of all: cyclocross. My season goal loomed large: to compete at the
Cyclocross National Championships in Bend, OR in December. Dismally, within a few weeks of racing things
quickly went downhill. The fatigue now
became ever-present; a constant crushing ache burned deep within the muscles
and bones of my legs. My concentration felt
scrambled and my usually quick reflexes on the bike lagged; I was frequently
crashing for no reason. Undeterred by
the surmounting weariness, I persisted with my training. I’d been an athlete my entire life, I knew how
to push through pain and discomfort! On
race day at Nationals, I had no gas in the tank, and finished a disappointing
15th. I knew I’d had the
fitness and confidence to finish in the top 5, though little did I know that no
amount of willpower, preparation or training could have overcome the infection
raging inside my body.
Winter/Spring 2011
I began my first job as an
enthusiastic new-grad physical therapist, working full-time, only to abruptly
regress, enslaved by my body’s infirmity. Within 2 months, I could barely hold myself
upright at the end of the day. Walking
up a flight of stairs left me breathless, dizzy and falling over. I was gripped by constant anxiety, my sleep
patterns continued to be erratic; my body simply felt ravaged. By the end of the day I felt like I was
getting the flu all over again, incredibly fatigued and aching all over. Countless days I drove home sobbing in
confusion and desperation. Chris was
back home from Montana by now, unwittingly thrust into the bewilderment of my
ailing health. After just 8 months, I
had to quit my job due to sheer exhaustion.
An extensive blood panel from my
family doctor revealed some inconclusive deficiencies that were "nothing
to worry about." Frustrated by the
false assurance, I began seeing a naturopathic doctor, who diagnosed me with
adrenal fatigue. At this point I
certainly agreed that my hormones were out of balance, but with another vague
diagnosis, I was still a hamster on a wheel – going round and round, getting
nowhere. It seemed that everyone repeated
the same advice: “You just need to get more sleep. You must be stressed out.
Are you sure you aren’t depressed? You should cut back on exercise.” No, I was not depressed, and I was doing less
than a third of my former activities. At
this point, I was fed up with doctors, and decided I just needed some time off
to heal.
Summer/Fall 2011
I took the next 6 months off from
work, attempting to let my body recuperate. I still cautiously pushed myself to exercise,
but each time bored deeper into an incomprehensible fatigue. With my career barely underway (after the
serious time and financial investment in grad school), I started working
part-time at a different PT clinic, hoping that I would recover by limiting
work volume. I also began seeing a
homeopathic nutritionist, thinking that maybe my symptoms were dietary related.
I completely re-vamped my diet, going
gluten-free, cutting out alcohol and caffeine, riding out a couple of
elimination diets, and ingesting a smorgasbord of costly supplements, but all
with little benefit. By the end of 2011,
I had not made any improvements in my health, but for the moment nothing seemed
to be getting worse. Of course by this
point I was greatly concerned with my overall digression – I researched, considering
myriad conditions – cancer, tumors, autoimmune disease? – yet nothing seemed to
add up. I’d always prided myself on
being stubborn and toughing things out, but upon reflecting on the strange
maladies that befell me over the past 2 years, I knew I needed more help to unravel
the burgeoning mystery.
Spring 2012
“Life’s not about how
hard of a hit you can give… it’s about how many you can take, and still keep
moving forward.”
― Sylvester Stallone, Rocky
By spring 2012, a cascade of more
outlandish symptoms rained down on me, adding further drama to the already
perplexing problem. Joint pain began – migrating
from my knees to my hips to my back. My
spine became extremely stiff; I had to constantly pop my back to relieve the
pressure. My breathing strained with the
weight of an elephant on my chest; I often felt like I was breathing through a
straw, struggling to get a full breath. I
had frequent episodes of swollen lymph glands, a sore throat, and an
intermittent flu. The headaches swelled
with the intensity of an ice pick piercing my brain. My symptoms seemed to cycle, waxing and waning
indeterminately. I became overly
sensitive to cold, light, sound and motion. My muscles were always tight, and my libido
went into permanent hibernation. Cognitively,
a diffuse cloudiness dulled my concentration and memory. I was feeling worse than ever. I was frustrated and desperate – nothing
seemed to relieve the immutable pain, fatigue, and exhaustion. I constantly questioned myself: Is what I’m experiencing real? Am I was losing my mind? I felt hopeless. At times I contemplated suicide. I slipped further into isolation; I had no
answers, and no one seemed to understand the origin of my affliction. My relationship with my husband and my family
strained. I hardly saw my friends. Everyone grew weary of hearing me say how
tired I was all the time, and seeing me down in the dumps. I had given up riding my bike, as it was just too
taxing. My life was exceedingly out of
control, like a runaway train, barreling down a track to nowhere. Deep in my heart, my late father’s voice
compelled me on, “no matter what you do, never give up.” I knew somehow, somewhere there had to be an
answer to this ceaseless, hellish torment.
Summer 2012
“All that is gold does
not glitter,
Not all those who wander are lost;
The old that is strong does not wither,
Deep roots are not reached by the frost.
From the ashes a fire shall be woken,
A light from the shadows shall spring;
Renewed shall be blade that was broken,
The crownless again shall be king.”
― J.R.R. Tolkien, The Fellowship of the Ring
Not all those who wander are lost;
The old that is strong does not wither,
Deep roots are not reached by the frost.
From the ashes a fire shall be woken,
A light from the shadows shall spring;
Renewed shall be blade that was broken,
The crownless again shall be king.”
― J.R.R. Tolkien, The Fellowship of the Ring
I’ve never been one to give up on
anything, but I sensed my hope and resolve draining fast. Chris and I were both at our wit’s end. We contemplated our options; we seriously
considered a full workup at the Mayo Clinic. At my last appointment with the nutritionist she
asked if I had ever considered the possibility of Lyme disease. I was almost confident that I did not have
Lyme because I never recalled a tick bite (less than 50% of people do) or the
classic "bulls-eye" rash (less than 40% get a rash). Given that ticks are the size of a poppy seed,
it’s completely reasonable that I had never even seen a tick in my life! I figured I had nothing to lose, and made an appointment
with the Lyme literate medical doctor (LLMD) she recommended, which was still 4
months away. In the meantime, I saw a
rheumatologist and tested negative for lupus and other autoimmune diseases.
Chris and I embarked on our amazing
vacation to the 2012 Olympic Games in London, and although I disciplined myself
to conserve energy and limit walking, I again rapidly lost weight and stamina,
returning home physically depleted. While
I was still reluctant about whether I had Lyme disease, I set about researching
on the Internet to educate myself. Upon
watching the acclaimed documentary "Under Our Skin," I was blown
away; these people in the film were literally describing my exact symptoms and
experience. The fragile vitality I held
onto seized in trepidation of what lay ahead.
Fall 2012
"First the truth
is ridiculed. Then it meets outrage. Then it is said to have been obvious all
along."
― Arthur Schopenauer
In August, my blood test results
for Lyme disease came back positive. Paired
with my clinical symptoms and history of illness, the findings were unequivocal. I began treatment in October. My LLMD also clinically diagnosed tick-borne
co-infections Babesia (a parasite and close relative to malaria, which infects
red blood cells), and Bartonella (an intracellular bacteria), both of which
produce symptoms that closely mimic and exacerbate those of the Lyme spirochete
bacteria, Borrelia burgdorferi. (Contrary to popular belief, one never gets
infected with just the Lyme disease bacteria. An infected tick’s saliva contains a veritable
soup of microorganisms and hence co-infections).
At first I met my new diagnosis
with extreme anger. How could this have
happened? How long will it take for me
to get better? When will I get my life
back? I was suddenly cast into a foreign
state – I knew next to nothing about Lyme disease. After all, wasn’t Lyme just an East Coast
thing? Or something that dogs and cats
acquired? (While Lyme disease is more
endemic to the East Coast and Upper Midwest, it is prevalent across the entire
United States, not to mention, Canada, Mexico, South America, Europe, temperate
Asia, and Australia. Ticks don’t stop at
geographical boundaries, and given animal and bird migratory patterns and the
proliferation of human and pet travel, Lyme disease is a serious issue
worldwide). However, soon my emotions
turned to gratitude; I felt very fortunate to finally have a concrete diagnosis
and begin treatment. Alas, I could
explain my plight to others, and know the underlying reason for the surmounting
craziness over the previous 3 years. Chris
and I immediately went on the offensive, he optimistically pronouncing, “A year
from now, you’re going to be so much better; you’re going to be back on the
bike.” Now that I had begun treatment,
that meant that I was going to get better quickly, right? I soon realized that I had merely scratched
the tip of the iceberg: underwater awaited an immense monster that had yet to
fully emerge.
“Absence of proof is
not proof of absence.”
― William Cowper
Lyme disease, while being the most
common vector-borne disease in the United States, is still largely a mystery – to
mainstream doctors and the general public alike. The CDC reports 300,000 new infection cases
each year (10 times the amount of HIV cases).
The most common adage is that “it’s hard to catch and easy to cure.” Unfortunately, that’s only true during the
acute stage (acquired within 6 weeks). The
fortunate people who identify and treat Lyme early, are typically able to
eradicate the infection with a few weeks of oral antibiotics. Regrettably, Lyme disease is often missed
diagnostically, or as in my case, the symptoms are not specific enough to raise
suspicion, and the infection advances, disrupting the immune system and causing
a cascade of inflammatory responses. After
6 months Lyme shifts to a chronic condition as it becomes well entrenched in
the body. The bacteria manipulates the
immune system by rearranging its structure, burrowing
into joints, muscles, the nervous system and other tissue, and wreaking
sustained havoc.
Even when Lyme is suspected the two
most common tests are notoriously unreliable.
The ELISA (65% reliability) and the Western Blot (20-30% test
seronegative when they are actually positive) often result in false negatives –
while Lyme’s co-infection
antibodies are rarely even looked for, although they may even be more common
than Lyme itself. Since both of these
tests look at antibodies, they are less effective early in the infection before
adequate antibodies are produced, and late in the infection when the pathogen
evades detection by an already subdued immune system. Additionally, research indicates multiple different
strains of the Lyme bacteria do not show positive on the current tests
available. Although the CDC requires
specific test criteria for surveillance, many doctors continue to incorrectly
rely on insensitive tests for diagnosis, which leaves thousands of undiagnosed
patients sick and confused, spending months, years, or even decades wandering
around from doctor to doctor, trying to find out what is wrong with them. Ultimately, Lyme disease is a clinical
diagnosis with various tests providing confirmation.
Lyme disease is a contentious and
highly politicized issue, split between two opposing camps, those who believe
in chronic Lyme disease: International Lyme and Associated Disease Society (ILADS)
and treating LLMDs; and those who do not: Infectious Disease Society of America
(IDSA) and mainstream medical culture. Mainstream
medicine, the CDC, and insurance companies all operate according to narrow rules
that dictate acceptable diagnosis and treatment. Chronic Lyme is marginalized by mainstream
doctors who deny that Lyme disease exists in any form after 30 days of
antibiotic treatment and that continued symptoms could be a
psychological problem, or a misunderstanding of normal aches and pains, or
something else entirely. Further debate
revolves around long-term antibiotic treatment – certain doctors argue it is unnecessary
and harmful; others point to long-term antibiotic therapy for successful recovery
from chronic Lyme. Because of the
combative undercurrent regarding research, diagnosis and treatment, the illness
is not well understood. Combined
with misdiagnosis and inadequate insurance coverage many Lyme patients often
encounter financial ruin before a cure.
Winter/Spring 2013
"Everyday may not
be good, but there is something good in every day."
The first few months of treatment
went relatively smoothly. Sure, I had
quite a few down days, where the initial Herxheimer reactions (an acute
worsening of symptoms due to microorganism die-off, coupled with the body’s
increased inflammatory response) left me weary and listless. But I still seemed to bounce back and have
several good spells. Chris and I were
able to go snowboarding a handful of times, and on warm days I could bicycle
the 2 miles to the coffee shop or go for a short walk. Initially I took advantage of such good days,
reverting back to my ambitious nature, squeezing in the most activity I could
tolerate. I was working steadily 3 days
per week, and feeling optimistic about my treatment progress. As spring approached, my ascension stalled and
my health took a sharp nose-dive again. Fatigue
and exhaustion crippled my upswing, lingering endlessly for weeks. I reduced my work schedule to 2 days per week,
but struggled to recover my energy even on my days off. My doctor began more focused treatment on the
Babesia, believing its chronic dissemination was silently undermining my
progress.
Summer 2013
"We must let go
of the life we have planned, so as to accept the one that is waiting for
us."
― Joseph Campbell
Beginning
the summer, I unexpectedly delighted in a couple weeks of pure joy. Out of the blue, I began feeling much better, I
was sleeping soundly, and my energy rebounded like I had not felt in years. I was elated! I actually rode my bike again, went on a
couple hikes, and felt a renewed spirit. My doctor was very pleased, and related that
we may have this thing on the ropes now after all: let’s go for the knockout
punch. Enthusiastically I concurred,
“Bring it on! I’m ready to kick this
disease in the ass once and for all, and get my life back!” Once I began the increased treatment, the Babesia
really showed its true colors. Several
people who’ve battled this awful disease warned me that Babesia is the worst
infection – the most chronic, the most debilitating, and things will get much worse
before they get better. Things did get
worse, in fact, downright horrible. The
Herx reactions from the medications were unbearable and other worldly. My head, ears and sinuses filled with an
excruciating crushing pressure, while my heart raced and skipped erratically
with the smallest exertion, as if possessed by some demonic pied piper. Rational thought blurred by vague, confused
paranoia; even time and space diverged, placing me in a peculiar floating alter
universe. Tragically, the insomnia circa
2010 returned with a vengeance. I was a
haggard zombie by day, barely functioning and coherent; then dreaded the long,
lonely desolation of the night. A couple
of very frightening episodes landed me in the ER on two separate occasions. My admission of Lyme disease was met with
pronounced skepticism by all but one doctor (who’d had a family member go
through the life-altering rigmarole of Lyme), and diagnostically the tests
revealed nothing wrong. Later I learned
that many people who have contracted malaria (and likewise Babesia) have
experienced similar creepy psychiatric manifestations paired with scary
physical reactions, especially with certain medications. With my body under such duress, the
Lyme-induced weight loss plan again took hold, this time I lost 10 lbs in 7
days, leaving me weak and worn-out. (It
took me months to gain back just a few pounds, and I’m seemingly always on the
verge of another weight plunge). Sadly,
once again the circumstances forced me to take an extended medical absence from
my work – another crushing blow, another cruel sacrifice, another wicked test
of my will.
Fall 2013
"Life is like
riding a bicycle. To keep your balance you must keep moving."
― Albert Einstein
This year has been nothing short of
an erratic rollercoaster. Lyme is a
strange, complex and demanding disease. Having
gone undiagnosed and untreated as long as I did, chronic Lyme disease is a
reality. No wonder Lyme is
referred to as the “great imitator” – it’s uncanny how it mimics so many
physical, neurological, and psychological conditions, spawning illness in all
the body’s systems. It’s a maddening existence, nothing about Lyme
is straight forward. There is no
defined treatment protocol or cure for chronic Lyme disease, it manifests
differently in each individual. It’s
often a trial by fire to find the correct medication ‘cocktail’ – for me it’s
been a turbulent ride of oral antibiotics, anti-malarials, and herbal
medications. The goal is to gradually peel
away the layers of disease, like an onion, drawing out all of the nasty,
virulent critters from deep within the caverns of my body, while at the same
time supporting organ detoxification and strengthening my immune system. It’s a nebulous process though, in many ways
calculated guesswork – never knowing how much of the infection remains or when
I might start feeling a little better. A
few things have improved over the past year, but not as much as I’d like, and
my stamina is greatly diminished.
Repeatedly, I take a few steps forward, optimistically visualizing that
I’m turning the corner, only to be ruthlessly sling-shot backward. It’s also quite expensive (we’ve already spent
tens of thousands of dollars on treatment in the past year, as only a scant
portion is covered by insurance).
Though NOTHING is more precious than your health, and I would give
anything to get mine back.
No doubt it’s an arduous
journey. For now, Lyme has re-written
the rules of my life. It’s tough to
accept the grave reality – seeing my reflection in the mirror: dark, hollow
eyes, protruding bones, atrophied muscle – a shell of my former self. Even so, I look completely normal on the
outside, often receiving compliments: “But you look so good! You look so fit
and healthy!” Amusing and so ironic – I guess I’ve honed my poker face to the
world, as the invisible, assassin thrives inside. The physical toil is one obstacle, but it’s
the unpredictable, relentless mental and emotional misery that is so
wearing. I’m constantly navigating a labyrinth
of fear and emotional lability. I get
angry and frustrated reminiscing all the dreams and aspirations this evil
scourge has robbed from me. I have to
accept the reality that I may never be 100% again, but I am fighting with every
ounce of my energy to be ME again. I
crave to return to the healthy, active, vivacious person I once was. I want my career that I’m so passionate for back.
I want to have children, start a family
(which is absolutely not possible in the foreseeable future due to the
unflagging exhaustion, and more critically, that Lyme can be passed from mother
to fetus. Never would I subject an
innocent person to the purgatory of this disease).
These days, I try to appreciate the
small joys of life, and relish the things I still can do. Some days are better than others. Invariably, I remind myself that amidst the
hardship and things I’ve lost, I have also gained so much. I’ve been given the gift of deep
introspection and empathy for others. I’ve
discovered a tenacious spirit and strength I never knew existed. I’ve never been patient with myself, but with
so much out of my control, this devil disease has hardened my endurance and
patience like I never thought possible. My
awesome family has been my rock, and I wouldn’t be here if it wasn’t for them. My friends have rallied around me in support.
I’m so incredibly grateful for my
husband Chris, for his unwavering compassion, love and kindness. He is the one who has lifted me up, carried me
on his back, absorbed the weight of my pain and grief so many times, I cannot
thank him enough. I ask him, “Will I
ever be normal again?” And his reply is
always without hesitation, “Yes you will, you will be better than before.” I know the road ahead is anything but certain,
but I remain hopeful that one day I’ll finally feel better and get back to
doing the things I love. I can’t wait
for the day when I can return to work, ride my bike, go for a run, go for a
hike, have a fulfilling social life again, and not worry if my body will hold
up. I believe I can, and I believe I
will. What the mind believes, the body
achieves. I am determined to keep moving
forward. And I will never, ever give up.
http://www.lymedisease.org/lyme101/lyme_disease/lyme_disease.htm
This athlete's story and documentary is inspirational and shares many similarities to mine:
I also highly recommend watching the documentary, Under Our
Skin:
http://topdocumentaryfilms.com/under-our-skin/*All content provided on this blog is for informational purposes only. The owner of this blog makes no representations as to the accuracy or completeness of any information on this site or found by following any link on this site.
1 comment:
Good girl,
we are very proud of you too .. and looking forward to the day I may get invited to ride with you :-)
XX
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