By Tom Grier, M.S.
In 1978 something strange happened to
me that I now believe was the harbinger of more ill fortunes to come. In the
winter of 1978, I was training for a marathon foot race.
It was being
held early in the summer, so I had to train all winter by running on a small
sixteenth-mile indoor track.
The running track was deep in the bowels of
an old campus building that was built in the late 1800s. It had dim lighting and
a funny smell, and was always heated to about 85 degrees.
constantly being asked by the track coach to relocate so that the track and
field team could train. When Spring approached, I was only too glad to run in
the mud and grime of the local woods.
I enjoyed splashing through puddles
and traversing streams, celebrating the joy of being young. In an average week,
I would run more than 60 miles.
I ran two marathons that summer, and
continued to run in the woods through the changing leaves, right up until the
snow became impassable.
During this time, I was taking graduate school
courses in immulogy and microbiology at the medical school in Duluth.
was while I was in the microbiology lab that I saw the first of many personal
medical conundrums which would follow.
I pricked my finger and placed a
drop of my blood on a slide. I did a routine blood smear which allowed me to do
a white blood cell count and a differential ratio of the various cell types. I
was shocked when I found I had 7% eosinophils. A normal count would be
In a patient with extreme allergies 3-4 % would be normal, but 7% was
quite high. I had an instructor repeat the smear, and she found it to be even
There were some discussions of a rare fatal blood disorder,
perhaps a parasitic disease, but we all opted for the more conservative
explanation of allergies.
Even though I hadn't had so much as a sniffle
or sneeze all year, we all concluded that my spring time allergies were kicking
in. We also ignored the fact that my neutrophil count was down, and my overall
WBC count was low.
A week later I got shingles on one side of my body.
Why? I was in the best shape of my life.
I only had a mild fever and a
mild case of shingles, but why did I get an outbreak of herpes zoster at age 24?
Normally, shingles is a condition elderly people get when their immune systems
About this time I also had a case of nonspecific
urethritis; a burning sensation when I urinated. I was treated with two weeks of
tetracycline and it went away, and so did my Shingles.
I really gave very
little thought to these events, and it was only years later that I would learn
of a disease called Human Granulocytic Ehrlichiosis (HGE), which I now believe I
had contracted from a tick bite I received during all the training I was doing
in the woods.
What I didn't know then was that I probably had a second
tick-borne disease that would not even be isolated for another three years -
I had always been able to function on just a few hours
sleep, but by 1980 I was sleeping a lot, and when I was awake I was tired,
depressed, fatigued, and constantly distracted.
It seemed I could not get
myself to concentrate on any one project for long. I had transferred graduate
schools, to the University of Washington.
There, I lived in a cabin in
the woods where I had to chop my own wood for heat. The cool, humid weather was
perfect for ticks, and I was bitten many times.
In 1980, tick-borne
diseases in America were an anomaly, so I never gave a thought that I could have
ever contracted anything serious from a tick bite.
Even if I did, the
symptoms would certainly manifest themselves within a few days of the bite, so
tick-borne diseases never entered my thinking.
I spent a summer camping
all through Europe, and once again the concern of tick bites never entered my
The doctoral program in Geriatrics I had enrolled in was
unexpectedly moved from the College of Biological Sciences to the College of
I quit school and went to work, with the idea I would go back
to graduate school the following fall.
I eventually found myself in the
pharmaceutical business as a salesman.
During the next decade, thoughts
of school faded as I continued to suffer from unexplained depression and
I started to gain weight, and had what felt like a continual
hangover that lasted from the time I awoke until I slept. When I did sleep, it
was a tortured sleep where I would toss and turn and tear at my covers. I
despised warmth and craved cold. My bed in the morning would look like a war
Needless to say, my personal relationships were suffering. It was
I had moved back to Duluth, Minnesota, and I continued to
experience an ever increasing array of symptoms. I now regularly had sharp
shooting pains in my chest that felt like ice picks.
I had heart
palpitations; my es were sensitive to bright lights; I had manic mood swings,
where I would be awake all night reading or playing piano. This was usually
followed by weeks of wanting to do nothing but stay in bed.
through these years I always had one faculty I could depend upon, and that was
my brain. If I read something I knew it. I remembered it, and I could quote it
almost word for word.
During one of my manic episodes, it was nothing to
read an entire book or two in a single afternoon. I was a walking encyclopedia
of knowledge, but I was still unable to pick up on what was wrong with
Then, around Thanksgiving of 1990, I had an episode I could not
ignore. By this time I was severely obese. I was tired all of the time, and I
now had to put all my efforts into my job just to keep up. I was the top
salesman in the country, and yet I could not find the time to answer my own
I was using all my weekends and all of my vacation time to just to
keep up. I kept thinking that I was going through a bad patch and things would
go back to normal.
I would lose some weight and things would be fine. I'd
catch up on work and start to enjoy my prosperity.
As a top salesman, I
was now being sent all over the country to sales conventions to help promote our
drugs, and to give training seminars to fellow salesmen.
I was even asked
if I wanted to become a trainer. A few years earlier this would have been a
wonderful perk and a great honor, but now it was torture.
I went to New
Orleans, Las Vegas, Orlando, New York, Colorado Springs, Philadelphia,
Cleveland, and Chicago. Each and every time it was torture. I wanted to get
through the day as quickly as possible, so I could go to bed and sleep.
skipped cocktail parties; I skipped awards banquets; I even skipped important
dinners with company executives - all so that I could just get those extra few
hours of sleep I would need to get me through the next day.
sales conferences, while three thousand of my fellow employees were at dinner
and seminars, I would sneak back to my hotel room and sleep.
Still, I was
considered the top salesman in the region overall, and top in the country for
our two newest products. I felt like a complete fraud.
from a regional sales conference, I got lost and confused while changing planes
in the Chicago Airport. I was sitting at the wrong gate for an hour, waiting for
my plane to be called. Everything around me looked strange.
sounded like cackling geese. Everyone looked like they were in fast motion, like
someone had sped up the projector. Every time I turned, I was dizzy and
disoriented. I was sweating, and completely lost.
I had to get to a
completely different end of the terminal. Because of the metal in my suspenders,
when I went through the metal detectors I set them off.
Here was a
sweating, nervous, completely disoriented man trying desperately to get to his
connecting flight, talking what was must have sounded like gibberish to the
security guards, about a flight that had left more than an hour
I was finally personally escorted to a sales agent, and had to
spend the next several hours trying to collect my wits.
week, I had bouts of disorientation that would come and go. My heart
palpitations were getting worse.
That summer, I thought a camping trip in
the Wisconsin Dells would give me some rest and perspective. I returned to work
even worse than before and farther behind. By the time Thanksgiving arrived in
1990, I was only going through the motions of working at all.
I now had
severe joint pain in my ankles; I had an unmistakable pressure building up in my
head; I was getting lost driving to places that I had been to hundreds of
I went to the doctor many times, and each time it was some vague
"...lets wait and see?" kind of attitude.
I was now sleeping almost 18
hours a day, and sweating so profusely that I often soaked through my sheets and
into the mattress.
During this time, I was the head of our local
Pharmaceutical Salesman Association, and I had to debate a panel of doctors on
the topic of what benefit pharmaceutical salesmen served the medical community.
It was a hostile debate on the doctor's turf.
I wasn't worried though,
because I slept up to about an hour before, debated for two hours, and went home
and slept another 12 hours straight. The few hours that I spent awake were now
like hazy dreams to me. Sleep was my only refuge. I now cared about nothing
In March of 1991, I was diagnosed with chronic atrial fibrillation.
This was the first solid diagnosis I had received in the past year.
doctor investigated low blood sugar, high blood sugar, Wolf-Parkinson-White
Syndrome, Sick Sinus Syndrome, Menier's Syndrome, Sinus Infection, anxiety panic
attacks, viral encephalitis, meningitis and finally, Multiple
By April of 1991, I now had a constant severe pressure in my
head. When I turned my head, the pressure would migrate from the top of my head
to the back of my head.
My vision was now reduced to a circle directly in
front of my eyes, and my peripheral vision was just a blurry swirling mess of
lights and images.
When I would move my head, there was a disturbing
gurgle as I heard bubbles move around inside my head.
I found myself for
hours in a trance like state almost catatonic, and severe body jerks would
awaken me. These jerks were so severe that I had to catch myself to keep from
Then, one day I did fall. Everything was a blurry mess. was in
the middle of the street floundering in front of oncoming traffic.
checked myself in at the local hospital where I was being worked up for Multiple
While I was in the hospital, my family doctor went on vacation
and the neurologist on duty took over my MS work up. As she walked into my room
for the very first time, she picked up my chart and immediately asked what the
results of my Lyme tests were?
I told her in slurred speech that no one
had ever mentioned Lyme disease. She said, "Well, we'll complete the MS work up,
but it will all come back negative."
Negative? Why? "Because you have
classic late stage Lyme."
Even before I had a scheduled spinal tap and
MRI, she had ordered IV Rocephin.
What was it she saw in my chart that in
but a few minutes she could diagnose Lyme Disease? Had not others read my chart
and investigated my case for nearly a year?
Where a team of specialists
could only reluctantly come up with MS after nearly a year of tests, this
neurologist was confident in five minutes that I had Lyme disease?
relieved that I had a treatable disease, but I was angry that it was not
recognized earlier! Had I not given my doctors everything they needed to make
Did I not patiently submit to tens of thousands of dollars
of tests? Did my doctors not have every marvel of medical science at their
Did I not agree to go to half a dozen different specialist
so that they could work as a team to diagnose me? What had I done wrong that
allowed them to miss a simple diagnosis of Lyme disease?
The answer was
evident when my family doctor came back three days later and visited me at my
bedside in the hospital. The first thing he said almost apologetically was
"Who'd of ever thought it would be a Zebra Disease like Lyme?".
Disease! Meaning it was as unlikely to find a Zebra in the local woods as it
would be to find Lyme disease.
After all, you don't look for malaria in
Alaska, and apparently my doctor didn't look for Lyme in Minnesota!
by 1991, hadn't Lyme become an established local pathogen? Surely a newly
discovered tick-borne disease would cause doctors to learn all they could about
This was my assumption, but it would be almost a year later
when certain pieces of this puzzle would start to fit together.
I was too
sick to do anything now except concentrate on getting better.
I was told
in a matter-of-fact manner that all Lyme was easily treated in 21 days, and that
I would soon be back to work. Twenty one days later, I was sicker than before
Every muscle in my body twitched and pulsated, and the
pressure in my head was far worse. I could only sit up in bed for a few minutes
before the pressure got worse, and I would pass out.
I was hallucinating
both visually and auditory. I heard phones ring when there were none. I saw
shadows twist into menacing shapes. I heard voices talking.
At night, I
saw flashing lights fill my vision, and my ears were constantly buzzing with
static and ringing.
I felt for the first time that I may be truly going
mad. I had to sleep with headphones on, playing classical music to drown out the
noise in my own head.
To make matters worse, my Neurologist who had been
so sure about Lyme disease, now seemed completely unsure.
She wanted to
stop my antibiotic treatment because I wasn't "cured" yet. In fact, in many ways
I was worse.
"What about herxheimer reactions?", I said. "Those only last
a few days", she replied.
I had to fight for treatment every single week.
My heart was worse; my brain was shot; my mind was a hopeless jumble of
uncontrolled thoughts - images and sounds that haunted me.
It was as if
several minds had been merged into one, and there was no way to sort the
During this time, I lost my disability status and was now without
a job, living on my savings.
It seemed that my whole life was out of
control, yet doctors had no empathy because, despite it all, my verbal skills
were quite good.
The skill by which I earned a living was now my enemy.
Every word I articulated expressed a cogent, coherent, lucid
I thought that, by clearly expressing my symptoms in a
rational manner, I would give doctors some scientific insight to this disease. I
I learned something that, in all of the years I had called on
doctors as a salesmen, I had failed to observe.
Most doctors have almost
no scientific curiosities about new diseases, and always want the short story,
one paragraph or less.
How do Iiagnose it? How do I treat it? Anything
that isn't black and white in medicine is dangerous territory, as far as the
doctor is concerned.
I was alive, I could walk, I could talk. "So", the
doctors asked, " What's the problem?"
Doctors I had called on for ten
years were now distancing themselves from me, because I was a threat to their
paradigm of thinking about Lyme. I was pointing out things about Lyme disease
that they had never known. I had read several hundred journal articles, and I
thought sharing this knowledge would be met with open arms.
realized that I was a threat to doctors because where they had made one mistake,
they had probably made hundreds.
Ignorance was not only bliss; it was
safer. The maxim of the new medical community was:
were medical-legal time bombs best left to other doctors to defuse. My journey
had brought me to an unsavory conclusion.
Some of the same people I went
to school with - the same people I taught as a graduate student - were playing
They were in essence cowards, unwilling to risk a shred of
security to advance their knowledge of a disease that was threatening the lives
of their patients.
There was safety in numbers, and until their peers
were treating Lyme dease aggressively, they were not about to be the lone
When hundreds of Lyme patients in a community all started
complaining of the same persisting symptoms post-antibiotic treatment,
eventually the lower ranks of doctors started reporting this to the infectious
The infectious disease specialists responded by
saying persistent symptoms were post-Lyme Syndrome, or psychosomatic disorder.
The family practitioners were placated.
If the Infectious disease doctors
weren't worried, why should they do anything different?
Then, more Lyme
patients came forward, and the infectious disease experts were placed in an
They had ignored the dozens of studies and case
histories showing culture positive patients post-treatment.
They are now
in a position of either admitting they are wrong, and chronic relapsing
seronegative Lyme Disease really does exist, or they can talk in vague
generalities, always falling back on the old dogma:
All infected patients
are antibody positive.
This is the medical loop hole that allows them to
pass on treang complicated patients, and skirt all controversy. " We tested
them; they were negative; end of story. Go away!"
But ask yourselves
Currently, there is a 4.2 million-dollar NIH study to investigate
the cause of Chronic Relapsing Lyme Disease.
Much of this study's
conclusion will be dependent upon using antibody serologies for determining
diagnosis and relapse.
If there is even one single study or accepted case
history that proves a seronegative patient can still be culture positive for
Borrelia burgdorferi, then isn't the entire basis of using any antibody
If the study is flawed in the beginning, the entire
conclusion will be baseless.
This is exactly how we got off on the wrong
foot in the beginning. We depended upon serologies to indicate the endpoint and
We didn't know better then, but we should certainly know better
now! So what's going on? Is it denial? A cover-up? Ignorance? Arrogance? The
inability for egos to yield to the truth?
"There are none so blind, as
those who will not see." I think it is a combination of all of these
What keeps me devoted to bringing Lyme Disease research to the
attention of doctors isn't just the daily reminder of my own symptoms, but
something that occurred to an acquaintance of mine.
At the same time I
was tentatively diagnosed with MS, I was told about a pharmacist I used to call
on who was diagnosed with what I was told was myasthenia gravis. It was a year
later when I learned it wasn't MG he was diagnosed with, but MS. I promptly went
over to see him at his house, and I was shocked at what I had seen.
once was a strapping 250-pound outdoors man was now a shriveled 100 pound
invalid. He couldn't walk; he could only use one arm; saliva dripped from his
mouth and his speech was almost indiscernible.
I did a symptom check
list, only to find that he had several tick bites, a history of rashes, and over
half of the Lyme symptoms on Burrascano's symptom checklist.
doctor, a man I had known for more than ten years, was clearly not informed
about Lyme Disease, the family asked him to consult with a Lyme specialist - a
young family practice doctor that was barely out of her residency.
elder physician went to the patient's house, and at the families request took
several blood and urine samples, as well as cerebrospinal fluid, which were all
to be sent to Mayo clinic, Igenix labs, and Marshfield Clinic for
In the meantime, the patient was placed on 500 mg. amoxicillin
three times a day. He immediately burst into fever and sweats, and had
Although the family doctor was informed that this
was a favorable and predictable Herxheimer reaction, the medication was stopped.
While waiting for the results of the tests, the patient died of respiratory
When the results never came, I went to the clinic lab director;
a person I knew for years from working with her on the John Bear Grease Dog Sled
Race. Renee' told me that all t samples were destroyed the same day they were
The doctor told her "...we don't send tests out of house."
This meant that there was never any intention to find the truth about the
patient's true condition.
What the physician didn't know was that the
family had kept several of the urine samples in the freezer.
learning what the doctor had done, they authorized the Lyme specialist to send a
sample in for analysis. It was determined there were particles of Borrelia
burgdorferi in the urine.
The particles were at such a high concentration
that it was one of the highest positives ever seen.
The remaining samples
are still frozen, but the family has no interest in pursuing malpractice or
medical negligence against a family friend.
To me, it was a premeditated
act on the physician's part to cover up the fact that he had misdiagnosed a
Perhaps he felt it was a waste of time to even do the
tests, but he indicated to the family that the samples would be drawn and sent
to the various labs as requested.
Yet, within minutes of returning to his
clinic, he had the lab manager destroy all of the samples!
It now became
apparent to me that, not only did most doctors not know much about Lyme disease,
they didn't want to know!
Many other things also became apparent to me,
but the biggest revelation, was that doctors were unwilling or unable to say: "I
was wrong, I made a mistake."
Either it was their egos unable to humble
themselves, or it was a fear of medical malpractice that could end their
In either case, they were ignorant of Lyme disease and had put
too much faith in tests, and not enough faith in their patients.
then, I have seen and heard many tragic Lyme disease stories - some of them
ending in wheel chairs, and still others in death.
The line in the sand
that now divides the Lyme-aware from those who treat Lyme like a strep throat,
is now so deep it is a chasm that I fear has become too large to build a bridge
I am now convinced that it will take a public statement by the
AMA and NIH to overcome the fear that doctors have for treating Lyme disease
There will have to be a national paradigm shift for doctors
to feel safe in treating chronic relapsing Lyme disease without the fear that
their own peers are questioning what they are doing.
We must also
legislate to eliminate third party provider's influence, such as HMO groups that
pay a bonus to groups of physicians for holding down medical costs.
makes the doctors police their own peers in order to receive large
We need to eliminate insurance companies from being able to
influence physician treatment decisions.
Even now, Blue Cross of
Minnesota is challenging a law which states that only the doctor, and not the
insurance provider, can decide on the length of treatment.
The patient is seronegative, and therefore cannot have an
active infection, so they won't pay for IV Rocephin.
Yet they are willing
to pay for less expensive oral antibiotics.
Is it really a belief she is
not actively infected, or is it actually a cost containment policy? All patients
want is access to treatment!
The argument that antibiotics are overused
and cause super infections is also flawed logic. [b]It was underuse of
antibiotics that caused antibiotic resistant forms of tuberculosis to
The director of the CDC during the sixties was recently quoted in
Discover Magazine as saying:
"We didn't know we had a slow dividing
bacteria that could hide in the body and sequester itself away from antibiotic
treatment. If we knew then what we know now, we would have blasted tuberculosis
with whatever it took to eradicate the infection off the surface of the
If we ever see those conditions again we will be ready!" Will
Post edited by: Canuck, at: 02/18/2009 10:06
i broke up tom's
really long, long paragraphs, bolded/emphasized things in his wonderful,
detailed personal story so NEURO LYME folks like me could read and comprehend it
i worked directly with tom on another project his LYME ON THE BRAIN
series of articles found in lyme facts of breaking things up for us NEURO lyme