The Real History of Lyme Disease

Lyme disease MSIDS was “officially” discovered by the western medical community in 1975, when Polly Murray from Lyme, Connecticut, contacted the Department of Health Services due to the strange illnesses her children were experiencing combined with a long list of other families experiencing similar symptoms. Near the same time Judith Mensch, from Old Lyme Connecticut, unknown by Polly and acting independently took the same steps after noticing strange physical and mental ailments affecting her children and neighbors (adults and children.)

Although at first glance it was thought to be juvenile rheumatoid arthritis, the health officials, concerned by the strange combination of symptoms – rashes, headaches and swollen joints – sent the women to consult with physicians from Yale University. The group was investigated by Dr. David Snydman,   Dr. Allen Steere , and Dr. Stephen Malawista who initially misdiagnosed the children with juvenile arthritis, and owing to the less than textbook nature of the illness called it “Lyme Arthritis”.

The original study involved a total of thirty-nine children and twelve adults, from a much larger list compiled by both women. Polly Murray, in her book published in 1996 “The Widening Circle: A Lyme Disease Pioneer Tells Her Story” says that sadly many of the symptoms they reported back in 1975 are just now being examined. But at the time, there was a feeling of relief after so many doctors shook their heads and sent her away without a clue to what was slowly destroying the health of her family.

Meanwhile, as time went by, the doctors observed that the children’s first symptoms typically started during the summer, the height of tick season. Several children reported having a skin rash just before developing the “Lyme Arthritis”, and many of them recalled being bitten by a tick where the rash appeared.

By the close of the decade, many new symptoms were being added to the original swollen joints, and the doctors quickly expanded the diagnosis from “Lyme Arthritis” to “Lyme disease”, in order to help physicians diagnose patients.

In 1980, researcher Willy Burgdorfer, a researcher and expert in spirochetal diseases at Rocky Mountain Laboratories (RML) in Hamilton, Montana,  along with his colleague Alan Barbour, M.D. from the University of Texas Health Science Center stumbled upon the causative agent for Lyme disease while studying a large number of ticks in an effort to determine the cause of Rocky Mountain Spotted Fever.

As they searched the ticks for rickettsiae (the bacteria that causes Rocky Mountain Fever), Burgdorfer noticed  “poorly stained, rather long, irregularly coiled spirochetes.” In many of the samples.  Further examination revealed spirochetes in 60% of the ticks.

Read "On the Trail of a Ticking Time Bomb" from SUNY's own publication.

Dr. Burgdorfer and Dr. Barbour continued to study this spiral-shaped bacteria, or spirochete, from infected deer ticks, and in November 1981, the two scientists further discovered that the spirochete caused both the symptoms of Lyme disease MSIDS and the strange bulls-eye rash called erythema migrans (EM).

By 1982 the spirochete was officially named Borrelia burgdorferi in honor of Dr. Burgdorfer’s role in its discovery.

SPREAD OF LYME DISEASE

The disease was quickly determined to be spread through the bite of a tick – specifically the “Ixodes scapularis”  (deer tick) - a hard shell species, and the disease rapidly spread throughout the Northeast.

Initially it was thought that the eastern white footed mice were the primary “reservoir” animal – an animal that infects the ticks that feed from them. It is now agreed that squirrels and birds (even lizards) can also be reservoir animals.

The reason deer are associated with the spread of Lyme is not because ticks get infected from the deer, but that they attract thousands and thousands of ticks as a source of blood and for mating.  A deer, even in winter, can travel miles in a day and will pick up and drop tick all along its journey.  Ticks may not become infected with Borrelia while feeding from a deer but that doesn’t mean it won’t contract another infection or parasite.

Any animal can act as a transportation system moving infected ticks far from their point of origin. 

Numerous studies have been designed to investigate possible roles wild birds might have in the maintenance of Lyme disease enzootic cycles in nature and for the expansion of endemic ranges. Lyme disease is a multisystem and multi-stage infection caused by three species of tick-borne spirochetes in the   B. burgdorferi sensu lato genogroup. These include   B. burgdorferi sensu stricto (North America and Western Europe),   Borrelia afzelii (Western Europe, Central Europe, and Russia), and   Borrelia garinii (Europe, Russia, and Northern Asia).

In North America, including Canada, Lyme disease is perpetuated by a cycle involving rodents, such as white-footed mice, and is transmitted to humans and other animals primarily by black-legged ticks   Ixodes scapularis in the northeast and Rocky Mountain Spotted tick in the north central U.S. and   Ixodes pacificus in the West.

Two important features of the epidemiology of Lyme disease in the U.S. have been the continuous geographic spread of the tick vector and temporal increase in reported cases within endemic areas over the past two decades. 

Surveys of ectoparasites of birds reveal that ticks commonly infest a wide range of species, especially thrushes, sparrows and other ground foraging birds. Ticks are usually found attached to the thin skin around the eyes and ears, and on the head – areas that are difficult for the bird to preen. Tick infestation of some birds can be substantial.

Although a wide range of tick species have been reported to parasitize wild birds,   Ixodes spp. are the most likely to carry   B. burgdorferi. Other species of ticks, occasionally test positive for   B. burgdorferi, but the significance of these findings continue to grow.

More than 300 species of birds breeding in the United States and Canada spend the winter in the West Indies, Central America, or South America.

These long-distance migrants travel hundreds to thousands of miles from their breeding grounds to wintering ranges.

An extreme example of long-distance migration is the Arctic Tern. The intercontinental trip from its circumpolar nesting site to its winter destination at the Antarctic pack ice is over 10,000 miles long and takes several months to complete.

Preparation for such long trips varies depending on the size of the bird and the length of trip. Birds depend on increasing their nutritional intake to provide energy reserves as stored fat. This is particularly crucial for species like the Blackpoll Warbler, which breeds in the boreal forests of Canada and makes a non-stop flight of 2,500 miles to spend the winter in South America.

Most long-distance migrants make a series of shorter flights, traveling at night when the air is cooler and the atmosphere is generally calmer. Days are used to rest and replenish energy reserves.

Stopovers at these “staging areas” are important from the viewpoint of Lyme disease because they provide the opportunity for picking up different species of ticks at different resting stops along the way.

Certain family groups of birds such as geese, swans and cranes use well-established migration corridors through North America. These include the Atlantic, Mississippi, Central and Pacific flyways. Geese, in particular, take their time making their trip and are usually found to spend time in the Northeast, most endemic part of the country for Lyme disease. 

These routes are oriented north to south in part because wintering areas are generally located south of breeding sites, but also because the mountain ranges, coasts and major river valleys of North America run in a similar direction.

It is interesting to note that many migrating birds in Europe and Asia travel in a more east to west fashion, which correspond to major coastlines and other landforms.

So it is  actually dangerous to oversimplify the huge variable that these different migrations have on the spread of Lyme disease in particular.

Several aspects of long-distance migration can contribute to whether certain migratory birds are more or less likely to host ticks on their cross-oceanic flights.

For instance, birds that over-winter in the rainforests of Central and South America inhabit (during their visit) the greatest biodiversity on earth. This may partially explain why ticks that are normally found there are showing up in unexplained parts of the world now, and infected with diseases that were never seen in those places.

However, it can also represent increased risk for exposure to the abundance of reservoir hosts and all types of pathogens that prosper and abound in the tropics.

The year-to-year variation in the movement of certain bird species is highlighted by vagrant migration, an episodic “invasion” into areas that are greatly beyond the normal range.

During migration, this is sufficient time for some birds to travel hundreds or even a few thousand miles before ticks complete feeding and drop off. An example of the capacity for wild birds to carry Lyme disease infected ticks long distances was part of a molecular epidemiologic study which provided evidence of trans-hemispheric exchange of Lyme disease infected ticks by seabirds from colonies in both the southern and northern hemispheres.

Overall, dispersal of Lyme disease infected ticks along migration routes is considered to be an important mechanism for the establishment of new areas of disease.

Another important area of investigation has been attempts to determine whether or not birds might serve as reservoir hosts for   B. burgdorferi. Spirochetes have been isolated from the blood of numerous bird species.

MEDICAL MYSTERY

The history of Lyme disease really begins many decades before the doctors from Yale were called to Lyme Connecticut.

Many feel that without the persistence of Ms. Murray that it would have taken many more years before the disease was discovered, however, the same symptoms had been studied and documented  two decades before Ms. Murray first called the authorities.

Dr. Edgar Grunwaldt, a practicing doctor on Shelter Island at the eastern end of Long Island, is credited by students of medical history to be the actual discoverer of Lyme disease. And just as Lyme disease was first known in Connecticut as “Lyme Arthritis, on Long Island a perplexing swollen knee made its debut in the early 60’s called “Montauk Knee”, once again named after the geographical town it was first diagnosed.

The leading authorities at that time were such a small group they couldn’t help but turn to each other as each new and frustrating symptom or differing responses to treatments occurred with various patients. Following are some of the pioneers in this emerging epidemic:

Dr. Sidney Robin, originally from John Hopkins, who treated the swollen knees with penicillin (evidently he thought that the rashes occasionally mentioned were from spider bites);

Dr. Edgar Grunwaldton Shelter Island who focused on the rash and contributed a lasting contribution to the study of Lyme disease from his vast collection of ticks and hundreds of blood samples from patients;

Dr. Jorge Benach, was one of the early researchers in Lyme disease, and continues to be a major contributor to cutting edge research at SUNY in Stony Brook with Dr. Luft. In 1981, Dr. Benach, then at the New York State Health Department, and Edward Bosler, Ph.D. collaborated in the dogged and dangerous work of gathering and testing ticks for disease-causing pathogens from Shelter Island on behalf of Dr. Willy Burgdorfer. (Read http://sb.cc.stonybrook.edu/magazine/on-the-trail-of-a-ticking-time-bomb/)

Dr. Benach also developed the initial laboratory test to detect the presence of antibodies to Borrelia burgdorferi, an ELISA test that became the original diagnostic test for Lyme disease. He continues to work with Lyme disease at the Center for Infectious Diseases, Department of Molecular Genetics and Microbiology at Stony Brook University., and recently has begun to investigate organisms that could be used as bioterrorism agents, specifically a bacterial agent of tularemia.

Dr. Paul Duray, a pathologist from Yale who collaborated extensively with Dr. Alan MacDonald in the early years. In Dr. Paul Duray's career, he single handedly expanded the number of types of Lyme disease to include:

·       Lyme disease related to Parkinson's disease, 

·       Lyme disease related to infections within the uterus, some resulting in fetal deaths, 

·       Lyme disease related to various muscle diseases, 

·       Lyme disease related to fasciitis which causes inflammation of the fascia, which is the connective tissue surrounding muscles, blood vessels and nerves, 

·       Lyme disease related to cystitis, 

·       Lyme disease related to the sometimes fatal cases of Adult Respiratory Distress Syndrome, 

·       Lyme disease related to acute inflammation of the spleen sometimes fatal, 

·       Lyme disease causing hepatitis,

Dr. Duray also published many landmark manuscripts which redefined and enlarged the medical and scientific understanding of Lyme disease and resulting symptoms.

Dr. Alan MacDonalda pathologist in South Hampton developed a method for diagnosing spirochetes in vitro using a darkfield microscope, and he was very generous helping other researchers to review bloodwork while devoting hours to researching Borrelia and later the effect of Borrelia on stillborn babies and SID babies that were loaded with spirochetes in each case. After a long hiatus in Texas, Dr. MacDonald returned to Long Island where he gathered evidence to show 70% of Alzheimer’s brains were loaded with Lyme disease. Dr. MacDonald remains active in research and the invention of research tools that have been immeasurable in their contribution to helping doctors and scientists understand the disease better.

Dr. Joe Burrascano was the reigning Lyme doctor in New York for decades until he turned to research due to harassment from the medical field after successfully treating thousands of patients from all over the world. (Although he was taken to court, he never lost his license to practice.)  He moved to Long Island at the beginning of the ‘80s from Nebraska and is still publishing his treatment guidelines which he shares at no charge. Thankfully Dr. Richard Horowitz collaborated extensively with Dr. Burrascano while he was a practicing physician, and now Dr. Horowitz has successfully treated over 12,000 people from around the world as of 2014. Together they are an active force around the world teaching doctors and helping to bring common sense to the medical debate. See MEDICAL CONTROVERSY.

Dr. Benjamin Luft  began his research in 1986 by collecting samples from around the world of various species of the Lyme disease bacteria, Borrelia.  As a professor of medicine at Stony Brook University Hospital, Dr. Luft first became interested in investigating Lyme disease after “witnessing a lack of effective diagnostic and treatment options for patients.” He and his colleagues had been on the trail of the mysterious Lyme disease for years, trying to discover why some people were affected by symptoms that lasted a few weeks while others developed a full-blown infection that attacked multiple organs and body systems that could cause decades of worsening symptoms and even death. 

Initial studies showed that some forms of Borrelia  cause only a skin rash, while others are much more serious  going into the blood stream and spreading to organs, into the central nervous system and throughout the entire body.

At first, Dr. Luft determined that Borrelia burgdoferi needed to have its very complex DNA broken down and each part labeled  to identify which Lyme strains are the most virulent in different geographic regions,( because our current FDA-approved Lyme tests only look for one of 120 known strains in the US.)

This was a huge undertaking for just one strain given that the DNA possesses 1800 proteins in all. Joining Dr. Luft was immunologist Steven Schutzer,  Dr. Clair Fraser, a world leading genomist from The Institute for Genetic Research and Dick Smith another world-class star in proteomics.  These top researchers along with others mapped not only one strain but dozens with more on the way (See “Genome Mapping” Below.)

Dr. Luft is also known for his efforts  in proving that Borrelia miyamotoi is actively infecting Americans when two decades ago it was only known to exist in Japan and Russia. Mainstream doctors have only accepted this since late 2013 in spite of the availability of evidence to the contrary  since 2001 (see the CDC website http://www.cdc.gov/ticks/miyamotoi.html .)

Another exciting and successful project for Dr. Luft and his team is the development of an effective vaccine. Dr. Luft found that one of the main difficulties in creating universally effective tools to combat Lyme disease is the variety of Borrelia species, each with different protein coats. So in collaboration with scientists at Brookhaven National Laboratory (BNL), Luft set out to create a vaccine that would be effective on all strains of Borrelia. Through the use of BNL’s synchrotron facility, scientists were able to solve the structure of the most abundant outer surface protein of Borrelia. 

Using this structure as a scaffold, Luft and his team bioengineered a unique protein that encompasses different parts of the various Borrelia species.  Essentially, using the protein structure as a template, he could swap out  the proteins that varied in other species into the template to create a new protein that did not exist in nature. Then these engineered proteins have been developed into a vaccine that has now been licensed to Baxter International Inc., a U.S. health care company which has already succeeded with the first  phase of two clinical trials in Europe, and is showing safety and efficacy. 

 

 

 

 

   

Jenna Seaver author of lyme disease resource

Jenna in Maui

 

        

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