Thomas Grier -A Short Historical Perspective of Lyme Disease

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inmacdonald
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Thomas Grier -A Short Historical Perspective of Lyme Disease

Post by inmacdonald » Tue 12 Nov 2013 18:08

A Short Historical Perspective of Lyme Disease in America

By

Thomas Grier

Since first being described in the American Medical literature in 1975, Lyme disease has often and mostly been thought of as an American disease. However, long before there were any medical journals, physicians or scientists, there has been some form of “Lyme disease” infecting animals and humans throughout the Northern Hemisphere. While we have defined Lyme disease as being caused by a spiral shaped bacterium called Borrelia burgdorferi the truth is the genus of Borrelia has given rise to nearly three-dozen recognized human pathogens. About one third of these pathogens are associated with Lyme disease and are considered a separate group from the Borrelia species that cause Tick Borne Relapsing Fevers.

These related Relapsing Fever bacteria that survive in ticks and rodents throughout the Northern hemisphere is an ancestral pool of related bacteria that is constantly changing, adapting, evolving and at times co-mingling in host reservoirs (rodents and birds) and ticks. Borrelia bacteria are born to constantly change and it is built into their genetics to do so at an accelerated rate.

The genetic history of the genus Borrelia is long and convoluted, and the history of Borrelia bacteria neither starts nor ends with the Lyme disease species Borrelia burgdorferi . Borrelia burgdorferi causes just one form of American Lyme Disease. We now must consider half a dozen new species of Borrelia as causing Lyme disease, and another half dozen species that cause “Lyme-Like” disorders.


In the early 1970s two observant housewives near Old Lyme Connecticut collected more than 250 medical histories of local children diagnosed with Juvenile Rheumatoid Arthritis. Polly Murray and Judy Mensch brought their collected data to the health department and their actions eventually through their persistence garnered the attention of CDC investigator and EIS* agent Rheumatologist Dr. Alan Steere. Dr. Steere soon published the first American medical paper on this emerging disease and used the term “Lyme Arthritis” to describe the illness.

The early history of Lyme disease is well documented in Polly Murray’s book aptly named: “The Widening Circle”. Murray and Mensch compared their data and discovered that the incidence of JRA was more than 20x the National average. Polly Murray who had a medical background suspected that the local JRA seen in their neighborhood was caused by some kind of infection. Murray and Mensch also postulated it was transmitted by the bite of local ticks, they associated tick bites with children’s bull’s-eye rash, and they recognized there were other symptoms that went beyond just rheumatoid arthritis. The kids in their neighborhood had memory loss something not generally associated with JRA.

Much of the work by Murray and Mensch and appropriate credit for what they did; has been diluted with time. The accolades that they deserve have mostly gone to the Lyme disease researchers that followed them. But if we are to credit the Lyme researchers that followed Murray and Mensch for their discoveries; we should also be cognizant of their many mistakes about this protean illness.

In 1975 Dr. Alan Steere introduced the term “Lyme arthritis” to the medical lexicon. Unfortunately it would be another seven years before the actual cause of “Lyme Arthritis” would be isolated and found to be a spirochetal bacterium in the genus Borrelia. All thirty+ species of Borrelia bacteria that cause human disease are spirochetes and under a microscope look very similar to the Syphilis bacterium.

When the cause of Lyme disease was known to be a spirochete everything we had assumed about this disease for the last seven years should have been put into question. This is because spirochetes aren’t like other bacteria: they have a history of being able to go into deep tissues including the brain. Spirochetes can evade the immune system, and they can go dormant. The ability to become metabolically inactive and hide within the brain is what causes relapses in patients even after aggressive antibiotic treatments.

Even with our known understanding of how dangerous and insidious spirochetal infections could be: Lyme disease was always treated as though it was exempt from these known aspects of relapse and persistence unique to spirochetal diseases, and Lyme disease from the beginning was placed on a pedestal within its own category as a relatively mild and easily treated illness. In other words they got it all wrong!

Several population studies that would follow would show the longer you followed Lyme patients after antibiotic treatment, the higher the incidence of relapse that would occur.

A Nantucket Island study showed a greater than 50% relapse after 5 years follow-up. Yet this and other studies would go on to state that there was almost no incidence of disability or long-term sequelae seen in these patients with Lyme disease after treatment. This despite more than 50 % reporting fatigue so severe that they were either disabled or had to reduce work loads, and tested near the bottom on tests that measured quality of life, and ignored things like persistent heart problems, neuralgias, and persistent arthritis. Most of these studies that reported no long-term sequele of Lyme disease only followed patients for a few weeks after treatment.

In the year 1982 the Lyme bacterium that was eventually isolated from both Deer Ticks, and later skin biopsies from Lyme disease patients presenting with Bull’s-eye rashes; was named after the Rocky Mountain Laboratory scientist Dr. Willy Burgdorfer. Dr. Burgdorfer was the first to isolate the bacterium, and identify it as a new species of Borrelia.

Dr. Burgdorfer had an excellent background in Tick Borne Relapsing Fevers (Borrelia spirochetes) and had insights to this disease that other researchers lacked. Unfortunately his role in defining this new illness took a back seat to the CDC scientists and major medical centers like Yale, Stony Brook, Mayo Clinic, and Harvard. Early on Dr. Burgdorfer suggested that almost every isolate of Borrelia burgdorferi had enough variation that you could argue that it was a new strain. In fact by 1992 over three hundred strains were recognized by the Rocky Mt. NIH Lab. It was only a matter of time before we would find new species of Lyme spirochetes, just as we find multiple species of Borrelia that cause Tick Borne Relapsing Fevers.

If we were to broaden our definition of Lyme disease just a smidge, it would be very easy to consider Lyme disease as just another Tick Borne Relapsing Fever. Unfortunately the early Lyme disease researchers perhaps for glory, seem determined to keep Lyme disease as a separate and sequestered disease.

By keeping Lyme disease in its own category of illness; it has led to poor science and research based on completely wrong assumptions about Borrelia burgdorferi as being fundamentally different from Tick Borne Relapsing Fevers. Patients suffered and experienced greater patient morbidity and disability because the medical community failed and is still failing to see just how serious a disease that any Neuroborreliosis can be whether it is Lyme disese, Lyme-Like-Disease, or one of two dozen Tick Borne Relapsing Fevers.

The time is long since past due to keep isolating Lyme Disease as its own separate disease, and time to start using the European term Borreliosis to describe human disease caused by any Borrelia species.

In the seven years from 1975 to 1982 that it took to discover the cause of “Lyme Arthritis”, most physicians were treating “Lyme Arthritis” with the recommended course of two weeks of tetracycline, or doxycycline. Since most symptoms usually responded to antibiotics, it was surmised that the infection must be caused by some as yet undiscovered bacterium.

It was then assumed during this seven year vacuum of knowledge, that like almost all other types of bacterial infections that this unknown bacterial pathogen could be successfully treated with one or two weeks of antibiotics. Unfortunately when it comes to surviving and undermining antibiotic treatment, spirochetes are in a class by themselves.

In 1945 it was already known that Tick Borne Relapsing Fevers in the brains of laboratory rats could not be cured even with heroic doses of penicillin. Even with injections directly into the brain and the stomach of rats infected with Borrelia turicatae, the Borrelia infection of the brain could not be eradicated without killing a third of the rats.

When Lyme disease was found to be caused by a spirochete; few researchers paid much attention to the very early documentations of numerous antibiotic treatment failures in individual patients. In these early years it turns out that much of what we were told about Lyme disease was in absolute terms, and much of what we were told as facts turned out to be untrue. These mistakes misdirected the medical community into dealing with Lyme disease as though it was a simple infection caused by a simple bacterium that would respond to a simple treatment. But it turned out that Lyme disease was not so simple.

In the first decade of American Lyme disease, almost everything important about this disease the medical experts got wrong.

Lyme disease was first described an arthritic disease, we were told it was only found in a small region in the NE USA, it was transmitted by only one species of tick (Ixodes dammini) and this newly discovered tick species was only found near Nantucket Island. The only officially recognized host reservoir for the infection was the white-footed mouse, this was despite insistence by entomologist James Oliver that other mammals including rats carried Lyme disease all throughout the south. We were told that Lyme disease was not transmitted transplacentally, and was not an intracellular infection. All these absolute Lyme facts and many more all proved to be untrue.

If we list these mistakes in a column you can see a chronological history of misinformation that resulted in bad research, poor treatment protocols, and medical treatment choices that culminated in patients who frequently relapsed and whose quality of life was compromised and declined every year that they were denied aggressive treatment with antibiotics, and more specifically antibiotics that entered the human brain in high enough doses and long enough to kill intracellular infections inside brain neurons.

Chronological list of early Untrue Facts from the first decade of Lyme disease from our Nation’s Leading Lyme disease experts and the CDC

· Only an Arthritic disease

· Is easily cured with two weeks of tetracycline or doxycycline

· Only transmitted by infected Ixodes dammini ticks

· Only found regionally in the NE USA

· The only host reservoir is the white-footed mouse

· Only one species of Borrelia causes Lyme disease

· Borrelia burgdorferi is not related to Tick Borne Relapsing Fevers and is a separate disease

· Unlike Syphilis it does not cross the placental barrier from infected mother to child

· Unlike Syphilis it does not enter the brain

· All patients get a Bull’s-eye Rash

· Lyme bacteria do not enter nor inhabit human cells (intracellular disease)

· Two Tiered Testing is better than a single Lyme test and is 99 % accurate in Late Stage Neurological Lyme (This is Currently Stated on the CDC 2012 Webinar on Lyme Disease Testing on the CDC web site)

· Adopting the Dressler Criteria for Western Blot Testing using five out of 10 selected bands is better than Western Blot interpretation based on known exclusive bands including bands 31 and 34 kda. (OSP-A and OSP-B)

· Lyme disease does not persist after two weeks of antibiotics but IgM antibodies can persist for months after treatment and are no longer significant

· Lyme disease is not a Relapsing Illness.

· A Bull’s-Eye rash is not diagnostic of Lyme disease

· Lyme tests using the B-31 strain of Borrelia burgdorferi are adequate to diagnose all cases of Lyme disease even though six other species of Borrelia are now pathogenic in humans and cause Lyme disease.

Imagine your self as a doctor who was completely new to understanding Lyme disease. Do you see how these completely un-true statements about Lyme-disease could lead to causing patient harm? Understand that most of these statements in the early days of Lyme disease were stated as absolute facts, and not something not to be debated or disputed!

--------------------

In these early days of Lyme disease most of the attention about Lyme disease was being paid to the NE USA where Lyme disease was officially accepted. But there was a controversy developing in Cape Girardeau Missouri.

Dr. Edward Masters a local family doctor started seeing patients with classic Erythema Migrans rashes, also known as a bull’s-eye rash, AKA the “Lyme Rash”. The problem was that all 300 of these collected and photographed rashes, were by state-law, and the CDC, were reportable to the health department as Lyme disease rashes.

The problem was they were not occurring in the NE USA, and they were associated with the bite of a dog tick called a Lone Star Tick; and Lone Star ticks weren’t infected with Borrelia burgdorferi the only known cause of Lyme disease. So by one definition the patients could not have Lyme disease, yet by law and by the CDC diagnostic criteria, the bull’s-eye rashes that these patients had, demanded that they did have Lyme disease and had to be reported as such.

So what did these patients have?

The rash was diagnostic for Lyme disease and Lone Star ticks did not carry Borrelia burgdorferi. Dr. Ed Masters tried in earnest to get the Lyme experts and the CDC to open their eyes and their minds to see that there was a problem with the current definition of Lyme disease. Later Dr. Masters also insisted there was a problem with curing his patients with just two weeks of oral antibiotics. By this time he and other clinicians were throwing everything they had at this disease only to find that many Lyme patients were refractory to aggressive antibiotic regimens. These extended treatments often included intravenous drugs like Rocephin , Vancomycin, Claforan, and combinations of oral antibiotics used for much longer than the known and recommended treatment protocols

Dr. Masters was diligent in his approach to diagnosing, understanding, and and treating this disease. He was careful to photograph and document the rashes and the tick bites. He tried to culture the bacteria from skin, blood, and tissue. Masters collected detailed patient histories. But unlike any other clinician of his time he went one step further.

Ed Masters saved his Lyme-patient’s blood samples, CSF samples, and skin biopsies in a medical freezer kept in his clinic. He also had the patients save duplicate samples at their own homes in their own freezers. This turned out later to be a very wise decision.

In these early years Dr. Ed Master’s should have been considered an important ally to the CDC and the State Health Department to better understand the pathogenesis of this new and mysterious disease. Instead he was treated as the enemy and persecuted on many levels.

Master’s troubles with the local health department continued for years and culminated in the illegal seizure of hundreds of his patient’s medical records, and blood samples, and skin biopsies. These were all without explanation confiscated from his office freezer. These well-documented and frozen patient samples were seized and were promptly and without explanation taken by the state and then without any testing or scientific investigation the patient samples were destroyed.

As with other Lyme rebels and mavericks who insisted on taking a pathology perspective about Lyme disease rather than a serology based perspective, Dr. Masters treated Lyme disease aggressively and against the recommended protocols that were being advocated by Yale Medical and the Infectious Disease Society of America IDSA. It seemed just a matter of time until he would somehow be sanctioned and silenced by a State Medical Review Hearing, but then Ed Master’s patients stepped forward.

Ed Masters insisted that all of his patients save duplicates of the samples that he stored in his office. The patients would keep them at their own homes in their own freezers. What was more important was that all patients signed a paper that said the samples that were stored in his office were the property of his patients and no one else. That was the legal loop-hole that finally quieted the barking dogs. No one accept the patients owned the samples, not even the state of Missouri and taking those samples without their permission and destroying them was a violation of patient’s rights and an invasion of their medical records.


When those patients went to the health department and requested the return of these samples; mysteriously and inexplicably all interest by the Health Department in re-educating Dr. Masters on how to diagnose and treat Lyme patients in Missouri vanished. Unfortunately Ed masters died at age 63 in 2009 from complications of diabetes. His lectures will be missed both for the insight and humor that Dr. Masters seamlessly wove into all aspects of his life.

Dr. Ed Master’s biggest contribution to Lyme disease will be the understanding that Lyme disease as it was first defined was not a stand-alone disease, nor a static disease. Borrelia bacteria like to change and genetic variations of Borrelia burgdorferi are common, and he was the first to suggest that what he was seeing was in fact a variation of Lyme disease. Today we know this variant in Missouri and the South to be called: STARI or Southern Tick Associated Rash Illness. This purposely-misleading name given to Master’s mystery disease offers nothing to clinicians as to it being related to all other human-Borreliosis. Borrelia lonestarri the cause of Master’s Disease is like all other Borrelia pathogens a genetic variant that over time and geographic isolation became yet another new pathogenic species of Borrelia that current Lyme tests cannot detect. Once again just like Lyme disease, STARI disease is wrongfully being placed in its own category of illness when physicians should be warned of its long and debilitating heritage.

Like it’s Borrelia relations that cause Tick Borne Relapsing Fevers, the Lyme spirochete and Borrelia lonestarii are prone to change, adapt, migrate, and survive. Twenty years before it was accepted, Dr. Masters also suggested that the migration of birds spread infected ticks north and south but in 1995 this was not accepted. Now we know that many of those migrating birds species not only harbor several species of ticks, but also are host reservoirs for Borrelia burgdorferi.

End Part One , by Thomas Grier, November 2013

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inmacdonald
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Re: Thomas Grier -A Short Historical Perspective of Lyme Dis

Post by inmacdonald » Tue 12 Nov 2013 18:18

Tom Grier is a distinguished microbiologist and researcher in Borreliosis diseases.

His Part I History and perspective will be followed by Part II and beyond.
________________________________________________________________________

MacDonald adds for emphasis the quotations from Tom Grier's post:
In these early years Dr. Ed Master’s should have been considered an important ally to the CDC and the State Health Department to better understand the pathogenesis of this new and mysterious disease. Instead he was treated as the enemy and persecuted on many levels.

Master’s troubles with the local health department continued for years and culminated in the illegal seizure of hundreds of his patient’s medical records, and blood samples, and skin biopsies. These were all without explanation confiscated from his office freezer. These well-documented and frozen patient samples were seized and were promptly and without explanation taken by the state and then without any testing or scientific investigation the patient samples were destroyed.

As with other Lyme rebels and mavericks who insisted on taking a pathology perspective about Lyme disease rather than a serology based perspective, Dr. Masters treated Lyme disease aggressively and against the recommended protocols that were being advocated by Yale Medical and the Infectious Disease Society of America IDSA. It seemed just a matter of time until he would somehow be sanctioned and silenced by a State Medical Review Hearing, but then Ed Master’s patients stepped forward.


Ed Masters insisted that all of his patients save duplicates of the samples that he stored in his office. The patients would keep them at their own homes in their own freezers. What was more important was that all patients signed a paper that said the samples that were stored in his office were the property of his patients and no one else. That was the legal loop-hole that finally quieted the barking dogs. No one accept the patients owned the samples, not even the state of Missouri and taking those samples without their permission and destroying them was a violation of patient’s rights and an invasion of their medical records.


When those patients went to the health department and requested the return of these samples; mysteriously and inexplicably all interest by the Health Department in re-educating Dr. Masters on how to diagnose and treat Lyme patients in Missouri vanished.
Unfortunately Ed masters died at age 63 in 2009 from complications of diabetes.

His lectures will be missed both for the insight and humor that Dr. Masters seamlessly wove into all aspects of his life

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