Saturday, 19 May 2012

Tom Grier - Lyme/MS story


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.

I was 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.

It 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 1%.

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 higher.

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 are compromised.

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 - Lyme Disease!

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 thinking.

The doctoral program in Geriatrics I had enrolled in was unexpectedly moved from the College of Biological Sciences to the College of Sociology.

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 fatigue.

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 zone.

Needless to say, my personal relationships were suffering. It was now 1984.

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.

Yet, all 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 me.

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 mail.

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.

I 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.

At national 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.

While returning 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.

The people 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 earlier.

I was finally personally escorted to a sales agent, and had to spend the next several hours trying to collect my wits.

The following 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 times.

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 else.

In March of 1991, I was diagnosed with chronic atrial fibrillation. This was the first solid diagnosis I had received in the past year.

My 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 Sclerosis.

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 falling.

Then, one day I did fall. Everything was a blurry mess. was in the middle of the street floundering in front of oncoming traffic.

I checked myself in at the local hospital where I was being worked up for Multiple Sclerosis.

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?

I felt 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 the diagnosis?

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 beckon call?

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?".

A Zebra 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!

Yet, 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 disease.

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 treatment.

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 images.

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 individual.

I thought that, by clearly expressing my symptoms in a rational manner, I would give doctors some scientific insight to this disease. I was wrong!

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.

I soon 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:

Unknown conditions 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 it safe.

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 maverick.

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 disease specialists.

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 adversarial position.

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 this:

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 serologies flawed?

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 cure.

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 things.

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.

What 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.

Since his 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.

The 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 analysis.

In the meantime, the patient was placed on 500 mg. amoxicillin three times a day. He immediately burst into fever and sweats, and had difficulty swallowing.

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 collapse.

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 collected.

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.

Upon 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 treatable disease.

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 career.

In either case, they were ignorant of Lyme disease and had put too much faith in tests, and not enough faith in their patients.

Since 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 across.

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 aggressively.

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.

This makes the doctors police their own peers in order to receive large bonuses.

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.

Their challenge is:

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 evolve.

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 earth.

If we ever see those conditions again we will be ready!" Will we?

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 all.

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 folks.