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New or modified by Jenna Smith, on May 15th, 2012|
This blog post comes from my personal research as I am trying to determine the best decision to make for my ravaged neurological system, depleted immunoglobulins, and in general my sub-normal immune system. My LLD, Dr. Katz, is a brilliant Neurologist who leaves nothing to chance, and one of the hard parts of his job is to determine the delicate balance that needs to be restored in each client. “IVIG is not a Lyme treatment,” he emphasizes to each Lyme sufferer.
But we all can see the seduction for chronic sufferers who have been so very ill and in such terrible pain. Will this be the answer? Continue reading The Miracle of 5-year old Italian Aloe Arborescens and Honey
New or modified by Jenna Smith, on May 15th, 2012| Dr. Luft at Stony Brook University Medical Center is once again on the forefront of exciting and meaningful new discoveries regarding Lyme disease that may actually change the face of our hopeless battlefield between modern medicine and the spirochete Borellia burgdorferi.
In addition to Dr. Luft, co-authors of “Whole Genome Sequences of Thirteen Isolates of Borrelia burgdorferi” include: Dr. Steven E. Schutzer, Department of Medicine, University of Medicine and Dentistry of New Jersey; Dr. Claire M. Fraser-Liggett and Dr. Emmanuel F. Mongodin of the Institute for Genome Sciences, University of Maryland; Dr. Sherwood R. Casjens, Department of Pathology, University of Utah Medical School; Dr. Wei-Gang Qiu, Department of Biological Sciences, Hunter College of the City University of New York, and Dr. John J. Dunn, Biology Department, Brookhaven National Laboratory.
According to “Newswise”, the finding is crucial to advancing research on Lyme disease, the most frequent tick-borne infection in North America and Europe, and may lead to better diagnostics and a vaccine. Dr. Luft presented the research results at an October 11 meeting in Washington, D.C., at the Institute of Medicine, an arm of the National Academy of Sciences. Read more about the incredible importance of this achievement – the study is reported in the early online edition of the Journal of Bacteriology at http://jb.asm.org, and Long Island’s “Newsday” (picture compliments of Newsday photos)
The first complete genome sequence of one strain of B. burgdorferi more than 10 years ago has helped researchers understand the pathogenesis of the disease. However, this understanding was limited with only a single genome sequence on one strain completed. By determining all genome sequences of B. burgdorferi, the researchers are providing a foundation for novel detection of Lyme disease, diagnostic approaches and prevention strategies. The timing is critical, as disease occurrence has become widespread over the past decade throughout the United States and part of Europe.
“By characterizing every gene in the Lyme disease agents family, we have a blueprint of every possible characteristic of the organism,” says Dr. Luft, senior author on the study. “This is the building block to developing more accurate and effective diagnostic tests, therapeutic agents and vaccines.
“We are depositing the millions of nucleotides that we have sequenced in the public database so that this valuable information will help to further enhance our research and that of other Lyme disease investigators.”
Dr. Luft and colleagues point out in the study that improved diagnostics are needed because the best clinical sign of Lyme disease, the erythema migrans skin rash, does not always occur in patients. In addition, diagnostic assays and vaccines developed before their blueprint of the entire genome of B. burdorferi have had less than satisfactory results.
“A driving force for doing this project was the observation that certain forms of the bacteria can be more invasive than others,” adds Dr. Steven E. Schutzer, lead author, and Professor of Medicine, University of Medicine and Dentistry of New Jersey. “We wanted to find out why and how to identify this property.”
Originally posted October 12, 2010
New or modified by Jenna Smith, on May 15th, 2012| I repeatedly try to reassure those who have failed on one or many protocols that it may just be the unique mixture of diseases and immune response, and/or immune strength.
It is devastating as this reader will tell you after her most recent commitment to Marshall Protocol. Meet Mindy who has suffered unbearably. Continue reading Some Win Big & Some Lose Big On Marshall Protocol
New or modified by Jenna Smith, on May 15th, 2012| According to the Center for Disease Control (CDC) Lyme disease is passed to humans by the bite of black-legged ticks (also known as deer ticks in the eastern United States) and western black-legged ticks infected with the bacterium Borrelia burgdorferi.
However, that is just not true.
According to Lyme Memorial.org and others the following “vectors” or insects (primarily ticks) carry Borreliosis burgdoerferi, and of course we know that there are many hundreds of types of Borrelia that can be incredibly virulent and continue to morph with each immune system it comes in contact with.
Check out this list:
Tick Vectors: Pathogens found in the United States:
- Amblyomma americanum- Lone Star tick
- Amblyomma auricularium
- Amblyomma cajennense- Cayenne tick
- Amblyomma dissimile- Iguana tick
- Amblyomma elaphense
- Amblyomma imitator- Imitator tick
- Amblyomma inornatum- Ixodid tick
- Amblyomma maculatum- Gulf Coast tick
- Amblyomma rotundatum
- Amblyomma tuberculatum- Gophertortoise tick
- Amblyomma ovale
- Aponomma trimaculatum
- Argasidae brevipes- Short legged Bird tick
- Argasidae cooleyi
- Argasidae giganteus
- Argasidae miniatus
- Argasidae monolakensis- Bird tick
- Argasidae persicus- Poultry tick
- Argasidae radiatus- Common Fowl tick
- Argasidae ricei
- Argasidae sanchezi- Adobe tick or Fowl tick
- Argasidae Carios brodyi
- Argasidae Carios capensis- Seabird tick
- Argasidae Carios concanensis
- Argasidae Carios coprophilus
- Argasidae Carios denmarki
- Argasidae Carios dyeri
- Argasidae Carios hasei
- Argasidae Carios kelleyi (formerly Ornithodoros kelleyi)- Bat tick
- Argasidae Carios mexicanus
- Argasidae Carios rossi
- Argasidae Carios stageri
- Argasidae Carios talaje (formerly Ornithodorostalaje)
- Argasidae Carios yumatensis
- Argasidae Ornithodoros coriaceus- Pajahuello tick
- Argasidae Ornithodoros dugesi
- Argasidae Ornithodoros eremicus
- Argasidae Ornithodoroshermsi- Relapsing Fevertick
- Argasidae Ornithodoros parkeri- Cooley tick
- Argasidae Ornithodoros puertoricensis
- Argasidae Ornithodoros turicata- Relapsing Fever tick
- Argasidae Otobius lagophilus
- Argasidae Otobius megnini- Spinose ear tick
- Argasidae Otobius sparnus
- Haemaphysalis chordeilis- Bird tick
- Haemaphysalis leporispalustris- Rabbit tick
- Ixodes affinis
- Ixodes angustus
- Ixodes auritulus- Bird tick
- Ixodes baergi
- Ixodes banksi
- Ixodes brunneus- Bird tick
- Ixodes conepati
- Ixodes cookei- Groundhog tick or Woodchuck tick
- Ixodes dentatus- Eastern Rabbit tick
- Ixodes eadsi
- Ixodes eastoni
- Ixodes hearlei
- Ixodes gregsoni
- Ixodes howelli
- Ixodes jellisoni
- Ixodes kingi- Rotund tick
- Ixodes laysanensis
- Ixodes marmotae
- Ixodes marxi- Squirrel tick
- Ixodes minor
- Ixodes muris- Mouse tick
- Ixodes neotomae
- Ixodes ochotonae
- Ixodes pacificus- Western Black-legged tick
- Ixodes peromysci
- Ixodes rugosus
- Ixodes scapularis (formerly Ixodes dammini)- Black-legged tick, Deer tick or Bear tick
- Ixodes sculptus
- Ixodes signatus
- Ixodes soricis
- Ixodes spinipalpis
- Ixodes texanus- Raccoon tick
- Ixodes tovari
- Ixodes uriae
- Ixodes woodi- Woodrat tick
- Ixodes Dermacentor albipictus- Winter tick, Moose tick or Elk tick
- Ixodes Dermacentor andersoni- Rocky Mountain Wood tick
- Ixodes Dermacentor halli
- Ixodes Dermacentor hunteri
- Ixodes Dermacentor nigrolineatus
- Ixodes Dermacentor nitens- Tropical Horse tick
- Ixodes Dermacentor occidentalis- Pacific Coast tick
- Ixodes Dermacentorparumapertus- Rabbit tick
- Ixodes Dermacentor variabilis- American Dog tick, Eastern Wood tick or Wood tick
- Rhipicephalus Boophilus annulatus- Cattle Fever tick
- Rhipicephalus Boophilus microplus- Southern Cattle Fever tick
- Rhipicephalus appendiculatu
- Rhipicephalus sanguineus- Brown Dog tick or Red Dog tick
That is quite a long list of ticks, and it doesn’t include biting insects that could spread the disease such as biting flies, fleas and mosquitoes – all very controversial due to the stated fact that a tick must be attached for 48 hours in order for a person to contract Lyme.
I find that hard to believe when my own vet had a syringe flicked off a dog that had Lyme disease, and the syringe landed in his arm. Two weeks later he had a bulls-eye rash in that exact location with all Lyme symptoms as well. The needle was in his arm for less than 5 seconds!
With spring here, be extra careful and cover yourself in strong tick repellent when you are going outdoors for any reason. Better safe than sorry!
Try “Sawyer’s Premium Permethrin Spay” to keep ticks and other biting insects away from your clothing. Also try “Sawyer’s Time-Released Insect Repellent Lotion” that lasts longer and is safe for the whole family.
New or modified by Jenna Smith, on May 15th, 2012| The University of Medicine and Dentistry of New Jersey (UMDNJ) collaborated with the Pacific Northwest National Laboratory (PNNL) to discover around 3,000 proteins in the spinal fluids of people who suffer from chronic fatigue syndrome and Lyme disease.
“We discovered that both diseases – chronic fatigue syndrome and post-treatment neurological Lyme disease – are central nervous system disorders,”AAÂ said Steven Schutzer, professor of medicine at UMDNJ. “They have their own characteristic set of spinal fluid proteins that lets us distinguish one from the other.”
The two diseases were thought to be similar, and many people did not believe chronic fatigue syndrome had a real biological or physical basis, Schutzer said.
“[The discovery] provides extremely convincing evidence, in my view, that these pathologies are real and distinguishable,” said Richard Smith, director of the Proteomics Research Program at PNNL.
Smith said this recent discovery is especially important for chronic fatigue syndrome patients.
“For a significant amount of patients, this will be validation that this isn’t all in their imaginations,” he said.
Smith believes the breakthrough in this study should be credited, at least in part, to the newly available technology.
“There are a couple of challenges with spinal fluid that limit what has been done previously,” he said. “One is just the small size of the samples that are typically available. Another is the ability to make broad measurements that detect and quantify many different proteins.”
The technology used in this study was based on mass spectrometry and high-resolution liquid chromatography separations, Smith said.
“We used state of the art instruments called mass spectrometers … to identify and quantify the proteins in the certain given sample,” said Tao Liu, PNNL senior research scientist.
Applying extensive separations reduced the complexity of the spinal fluid sample and allowed for the identification of more proteins in the sample, Liu said.
“In the end we did arrive at a total of roughly 2,500 proteins … which is really the most comprehensive analysis report to date on chronic fatigue syndrome … spinal fluid,” he said.
With the publication of this study, the medical world has a list of proteins to start making hypotheses as to the cause of chronic fatigue syndrome, Smith said. This study gives them the building blocks and tools to do it.
“Once you begin to look at the proteins and begin to understand which proteins are involved … you focus your attention on what you may actually be able to do in prevention to alter the outcome,” he said.
Almost all drugs are targeted at proteins, Smith said. Once a person discovers a protein that is involved in crucial biological pathways, there is potential in at least targeting that protein in drug development.
Smith said this study shows that the new technology used enables careful and in-depth study of proteins in spinal fluid for more diseases than just chronic fatigue syndrome and Lyme disease.
“There appear to be two distinct disease states when we look at the molecular level, and there probably are many types of cancers and many different disease states that we lump together because we don’t understand the differences,” he said.
The recent research development points a way to show how a lot of diseases and disease states will be studied in the future, Smith said.
“I think these kinds of developments are going to lead to real revolutions in medical practice,” he said. “They will probably reveal many disease states that we don’t know about or distinguish at the present time and that’s vital to addressing them.”
New or modified by Jenna Smith, on May 15th, 2012|
Is Lyme disease fatal? Yes, of course it is.
Before you panic, just because you feel like you are dying right now doesn’t mean that your Lyme disease is going to put you in the grave anytime soon. However, Lyme disease can infect any and/or all of your organs – most dangerously your heart and brain.
As early as 1990, Lyme disease has been listed as the official cause of death – even acknowledged by the CDC – in the case of Amanda (“Mandy”AAÂ) Schmidt, 11 years old who was bitten by a tick 1988 and misdiagnosed with strep when the rash and fever appeared (without lab confirmation.) Mandy was in remission for a number of months before she developed a raging fever, went into a coma after a grand mal seizure, and then continued to manifest a variety of other symptoms even after coming our of the coma (swollen and painful joints, strange rashes and brain damage. She died on September 24, 1990 almost 2 years after the tick bite.
This was no surprise to Dr. Alan MacDonald who was the pathologist at South Hampton Hospital in New York (not many miles from Deer Island see Lab 257). Dr. MacDonald had been examining tissue samples under a darkfield microscope showing spirochetes – Borrelia burgdorferi in particular – as the cause of death in many stillborn infants and sudden death in infants and young children in which there was no other known cause of death.
Dr. MacDonald later used the same technique to identify Borrelia burgdorferi as the cause of Alzheimer related deaths upon examining brain tissue.
The unfortunate truth is that so many people are never diagnosed with Lyme and suffer for years with an “unknown” infection. I had several organs removed from my body by doctors who examined the organs in the lab and diagnosed infectious damage but never revealed the causative infection. I am sure I am not alone with this medical history. So who can begin to count the deaths that have occurred in mental institutions, geriatric wards, neo-natal wards and in the general population due to Lyme disease if the tissue examined in the autopsy id not tested for spirochetes.
Even with this barrier to gathering true statistics, there were over twenty confirmed Lyme related deaths in the year of 2000 according to sci.tech-archive.net and http://www.lymememorial.org keeps track of reported deaths due to Lyme disease. In spite of the growing numbers, the pat answer from the mainstream medical community is that Lyme disease rarely causes fatalities.
Dr. Brian Fallon of Columbia University has done a study showing that Lyme disease patients are much more prone to depression and suicidal pressure than other patients with similar chronic diseases. A disease can affect the will to live in the same way it affects joints, tendons, hearts and eyes Suicide is probably the most common cause of death for those with Lyme disease – at least those who can be counted precisely.
Dr.Richard Bransfield says,
“Suicidal tendencies are common in neuropsychiatric Lyme patients. There have been a number of completed suicides in Lyme disease patients and one published account of a combined homicide/suicide. Suicide accounts for a significant number of the fatalities associated with Lyme disease. In my database, suicidal tendencies occur in approximately 1/3 of Lyme encephalopathy patients. Homicidal tendencies are less common, and occurred in about 15% of these patients. Most of the Lyme patients displaying homicidal tendencies also showed suicidal tendencies. In contrast, the incident of suicidal tendencies is comparatively lower in individuals suffering from other chronic illnesses, such as cancer, cardiac disease, and diabetes.
“To better understand the link between Lyme disease and suicide, let’s first look at an overview of suicide. Chronic suicide risk is particularly associated with an inability to appreciate the pleasure of life (anhedonia). People tolerate pain without becoming suicidal, but an inability to appreciate the pleasure of life highly correlates with chronic suicidal risk. Of course, there are many other factors that also contribute to chronic risk. For example, one study demonstrated that 50% of patients with low levels of a serotonin metabolite (5HIAA) in the cerebrospinal fluid committed suicide within two years. Apart from factors which contribute to chronic suicidal risk, there are also factors which trigger an actual attempt, i.e.; a recent loss, acute intoxication, unemployment, recent rejection, or failure. There is much impairment from Lyme disease which increases suicidal risk factors. However, suicidal tendencies associated with Lyme disease follow a somewhat different pattern than is seen in other suicidal patients. In Lyme patients, suicide is difficult to predict. At AAÂtempts are sometimes associated with intrusive, aggressive, horrific images. Some attempts are very determined and serious. Although a few attempts may be planned in advance, most are of an impul AAÂsive nature. Both suicidal and homicidal tendencies can be part of a Jarish-Herxheimer reaction.
I cannot emphasize enough the behavioral significance of the Jarish-Herxheimer reaction. As part of this reaction, I have seen and heard numerous patients describe becoming suddenly aggressive without warning. I can appreciate skepticism regarding this statement. How can this be explained? Like many other symptoms seen in Lyme disease, it challenges our medical capabilities. In view of this observation, I advise that antibiotic doses be increased very gradually when suicidal or homicidal tendencies are part of the illness.”
Read Dr. Bransfield’s entire article here.
For more information on specific individuals who have died from Lyme disease check out:
http://www.facebook.com/pages/The-Lyme-Disease-Memorial- Page/200900793255749?sk=wall in addition to http://www.lymememorial.org.
If you are contemplating suicide due to your ongoing symptoms of Lyme disease please contact your doctor immediately. Anti-depression medications will help until you can recover. You need all the support you can get.
And remember, you are not alone.
New or modified by Jenna Smith, on May 15th, 2012| Continued From Part One -
In addition to all of the other exciting news, Pamela Weintraub received a standing ovation for her very personal presentation that you can read in full here. And then the breaking news from the research team headed by and presented by Dr. Luft from Stony Brook University Medical School is covered in detail here.
Towards the end of Ms. Weintraub’s presentation, a very intriguing reference was made regarding “P4 technology” and a Dr. Leroy Hood in Seattle.
I was so amazed by the exciting possibilities of new technology presented in Ms. Weintraub’s book “Cure UnKnown” (If you haven’t read it yet you simply must stop what you are doing and get your hands on a copy as fast as humanly possible!) I quickly looked up any reference I could find to Dr. Hood and was stunned to feel as though I were being transported to a fantasy or science fiction novel.
The Institute for Systems Biology is the healthcare of the future. I will let their public relations firm describe it rather than risk misleading anyone.
Systems Biology: the 21st Century Science
Systems biology is the study of an organism, viewed as an integrated and interacting network of genes, proteins and biochemical reactions which give rise to life. Instead of analyzing individual components or aspects of the organism, such as sugar metabolism or a cell nucleus, systems biologists focus on all the components and the interactions among them, all as part of one system. These interactions are ultimately responsible for an organism’s form and functions. For example, the immune system is not the result of a single mechanism or gene. Rather the interactions of numerous genes, proteins, mechanisms and the organism’s external environment, produce immune responses to fight infections and diseases.
Systems biology emerged as the result of the genetics “catalog” provided by the Human Genome project, and a growing understanding of how genes and their resulting proteins give rise to biological form and function. The study of systems biology has been aided by the ease with which the internet allows researchers to store and distribute massive amounts of information, plus advances in powerful new research technologies, and the infusion of scientists from other disciplines, e.g. computer scientists, mathematicians, physicists, and engineers.
Traditional biology – the kind most of us studied in high school and college, and that many generations of scientists before us have pursued – has focused on identifying individual genes, proteins and cells, and studying their specific functions. But that kind of biology can yield relatively limited insights about the human body.
As an analogy, if you wanted to study an automobile, and focused on identifying the engine, seat belts, and tail lights, and studied their specific functions, you would have no real understanding of how an automobile operates. More important, you would have no understanding of how to effectively service the vehicle when something malfunctions.
So too, a traditional approach to studying biology and human health has left us with a limited understanding of how the human body operates, and how we can best predict, prevent, or remedy potential health problems.
Biologists, geneticists, and doctors have had limited success in curing complex diseases such as cancer, HIV, and diabetes because traditional biology generally looks at only a few aspects of an organism at a time.
As scientists have developed the tools and technologies which allow them to delve deeper into the foundations of biological activity – genes and proteins – they have learned that these components almost never work alone.
They interact with each other and with other molecules in highly structured but incredibly complex ways, similar to the complex interactions among the countless computers on the Internet. Systems biology seeks to understand these complex interactions, as these are the keys to understanding life.
The individual function and collective interaction of genes, proteins and other components in an organism are often characterized together as an interaction network.
Indeed, understanding this interplay of an organism’s genome and environmental influences from outside the organism (nature and nurture) is crucial to developing a “systems” understanding of an organism that will ultimately transform our understanding of human health and disease.
Systems biology is still in its infancy; we are at the turning point in our understanding of what the future holds for biology and human medicine.
The Institute for Systems Biology is pioneering this rich new opportunity.
What is “P4″ and how will it affect chronic Lyme disease? From Dr. Hood:
The challenges of biology are focused around three central features of life: evolution, development, and physiology.
These features operate across very different time dimensions: roughly millions of years, the lifetime of the organism, and seconds to weeks, respectively. Our laboratory is focused on a series of deep biological questions relating to these features.
- How do gene families evolve?
- How do gene regulatory networks change in evolutionary terms and operate across the developmental and physiological time dimensions to control biomodules? Biomodules are groups of proteins that execute a particular function (e.g., cell cycle or sugar utilization).
- How do innate and adaptive immune systems develop and function?
Research SEATTLE, Oct. 6, 2005 – The Seattle Neuroscience Institute (SNI) at Swedish Medical Center is preparing to enter its next phase of growth with the addition of new leading-edge facilities and three new, prominent neurosurgeons.
We have pioneered the application of discovery science and systems biology to three very different types of disease
- prostate cancer involves a loss of the regulation of cell division.
- Prion disease is caused by a misfolded protein (a prion) which
- has the ability to catalyze the misfolding of normal prions
- leads to disease by causing misfolded prions to aggulinate in nerve cells, thus killing them
- Type I diabetes is an autoimmune disease where the immune system attacks cells of the pancreas.
We utilize several discovery tools for the aforementioned studies, including DNA sequencing of expressed sequence tags (EST). These are single sequence runs on individual cDNA clones and DNA array analyses of the patterns of gene expression in normal and diseased tissues. They identify gene products that are disease-specific. It appears likely that changes in the patterns of expression of selected genes can both stratify disease and the disease path progression.
Halobacterium and yeast are wonderful model organisms in which to develop the approaches to systems biology so that they can be applied to higher organisms. In these organisms, we are studying the relationships between gene regulatory networks and their control of biomodules. The sea urchin is an ideal organism for studying gene regulatory networks in development because:
- development is simple
- there exists 100 years of development experimental data
- billions of eggs can be obtained synchronously fertilized, and terminated at any stage of development
- thousands of transgenic sea urchins can be produced in an hour
- Developing an ink-jet oligonucleotide synthesizer that will synthesize oligonucleotide arrays with great flexibility in format design.
- Developing a scanning device to analyze the melting curves of oligonucleotide arrays.
- Collaborating with chemists at Caltech and the University of California Los Angeles to develop nanotechnology platforms that can capture many different data types (e.g., mRNA and protein concentrations, protein/protein and protein RNA interactions, single cell assays). Measurements will be made electronically so real time analyses are possible.
- Beginning a collaboration with a company for single molecule DNA sequencing, which over the next five years may increase the sequencing throughput by 1,000-fold or more and decrease the cost of sequencing by several 100-fold or more.
- Developing with others a display tool, Cytoscape, for graphically integrating many different global data sets (mRNA and protein concentration changes, protein/protein and protein DNA interactions.
The sea urchin also has a fascinating innate immune system with hundreds of Toll-like receptors.
The mouse is used to study hematopoietic stem cell development and adaptive immunity. The mouse is also used to study prion disease and diabetes. We have studied Type I diabetes and prostate cancer in humans. The organization and evolution of the immune T-cell receptor and major histocompatibility complex gene families have been studied comparatively in humans, mice, and pufferfish.
Features of chromosomal architecture (e.g., big genes, gene deserts) have also been studied in these animals. We are also using two similar inbred strains of mice – one contracting diabetes and the other normal – to develop a multiparameter blood assay for the onset and progression of disease (measuring changes in the mRNA concentrations of blood cells across the time span of disease onset).
This will obviously be a key technology for predictive medicine.
It is clear if you take the time to peruse the website for the Institute for Systems Biology that they are far removed from the politics regarding diagnosis and treatment of chronic Lyme disease, and focused on developing tools for the medical community of the future to use that may not only eradicate chronic Lyme disease but cancer, AIDS and many other fatal diseases.
I hope we are alive to benefit from this technology but even if we aren’t, those of us who have children or grandchildren with chronic Lyme will have hope.
Hope is always a good thing.
New or modified by Jenna Smith, on May 15th, 2012| What many feared would be another whitewashed “head-in-the-sand”A informational presentation “The State of the Science” review of Lyme disease to the IOM (Institute of Medicine) last week on October 11, 2010 in Washington DC turned out to be a wildly successful event that marks a shift in the perception of chronic Lyme disease and the seriousness of the national epidemic facing America.
Initially, due to the fact that members of ILADS were not invited to attend, there was a perceived bias against the rapidly increasing evidence of not only a raging epidemic across all 50 states, but also the hard evidence piling up from scientists from every field (without any agenda) that quite clearly points to the reality of “chronic” Lyme disease – a fact that many doctors have put their profession on the line by insisting for over 30 years that such a disease could not and did not exist…SURPRISE!
In lieu of personal input, a letter was sent to the Committee Chair (Dr. Coussens) from the President of ILADS Dr. Robert Bransfeld (pictured), and Dr. Kenneth Leigner, a very experienced and respected Lyme-literate MD on the forefront of this battle for:
Dear Dr. Coussens: I am writing on behalf of the International Lyme and Associated Diseases Society (ILADS) to express our disappointment with the lack of balance in the selection of the IOM panel and speakers for the “State of the Science” review of Lyme disease.
The science in Lyme disease has been a topic of great debate and polemic viewpoints. The two viewpoints are reflected in Lyme guidelines from the Infectious Diseases Society of America (IDSA) on the one hand and the Lyme guidelines from ILADS on the other, both evidence-based.
It is of great concern that four of the six panel members selected by the IOM are IDSA members because IDSA is known to have a strong institutional bias in its interpretation of the science in Lyme disease. In addition, IDSA has been investigated by the Connecticut Attorney General, who found extensive conflicts of interest and suppression of scientific evidence in the guideline development process. The fact that IDSA ultimately vindicated its own guidelines through a self-selected review panel that excluded treating physicians and was comprised almost exclusively of IDSA members should be no surprise given the bias of the review panel.
There is a significant disconnect between IDSA and the community of physicians who treat Lyme disease. There is also an urgent need for transparency in recognizing the limitations of the existing Lyme research. The bulk of the research on Lyme treatment has been controlled by IDSA researchers. Their research is based on sample populations that do not reflect those seen in clinical practice. These researchers then apply their interpretation of their own research (in which they have a vested interest in terms of personal reputation, academic careers, and commercial interests related to diagnostic tests, vaccines, and expert witness fees) to clinical care through guidelines, resulting in enormous harm to patients.
Dr. Willy Burgdorfer of the National Institutes of Health and discoverer of the Lyme spirochete, puts the research into perspective: “The controversy in Lyme disease research is a shameful affair. And I say that because the whole thing is politically tainted. Money goes to people that have for the past 30 years produced the same thing – nothing.”
In particular, we have grave concerns that:
- The speakers do not include any physicians from ILADS, many of whom have published in peer-reviewed journals, conducted clinical research, and are extensively familiar with the science related to Lyme disease;
- Dr. Wormser, who authored the IDSA guidelines and ran the guidelines panel that suppressed non-conforming evidence, is the only person addressing the state of the science and gaps, and as the first speaker he will frame the issues for the conference without opposing viewpoints being presented;
- Dr. Aguero-Rosenfeld, who, until recently, worked for Dr. Wormser until recently, is the key speaker on laboratory testing, and opposing viewpoints on this topic will not be presented;
- Seven of the speakers were either members of the IDSA guidelines panel or were included on copycat guidelines generated with members of the IDSA guidelines panel;
- Over 70% of the physicians awarded the key 25 minute speaking slots are either members of IDSA or sat on the IDSA guidelines panel or were included on copycat guidelines generated with members of the IDSA guidelines panel;
- Researchers and physicians who are more open-minded in terms of understanding the treatment implications of research for chronic Lyme disease were either excluded from speaking, relegated to topics that are not their specialty, or placed on panels where their time to speak will be severely limited.
We do not believe that the selection of the “State of the Science” panel or the speakers reflects the diversity of scientific viewpoints in this highly controversial area. This lack of balance and diversity will necessarily erode the integrity of the process and the results. We encourage you to revamp the process to address these issues.
Sincerely yours,
Dr. Robert Bransfield, MD, DLFAPA
President, ILADS
Letter from Kenneth B. Liegner, M.D.
Lonnie King
Trevonne Walford
Christine M. Coussens
Members of the IOM Committee Panel for
“Lyme Disease & Other Tick-borne Diseases: State of the Science”
Institute of Medicine of The National Academy of Sciences
Keck Center
500 Fifth St. NW
Washington, DC 20001
Dear Lonnie King, Christine Coussens, Trevonne Walford and Panel Members:
I spoke with Trevonne a few days back to inquire whether or not there would be opportunity for attendees of the up-coming meeting to make comments and/or statements in the context of the meeting and learned that the meeting was structured only to allow focused questions in response to a preceding presentation or discussion.
I mentioned in passing that I was pleased to see that there was representation of a diversity of views in terms of choice of speakers which included Carl Brenner, John Aucott, Brian Fallon, Sam Donta and Pam Weintraub.
It has since been pointed out to me that many of these individuals have very limited time in which to articulate a position concerning the issue of chronic Lyme disease since the physicians are ensconced within discussion panels and do not have the opportunity to speak at length.
The process of planning the meeting has been, as far as I can tell, quite opaque and it is notable that clinicians who actually treat persons with chronic Lyme disease have been nowhere to be found on either the planning committee or the panel. Neither is any clinician afforded adequate time to present, in a formal way, an opposing position to what must be viewed as the “keynote”A speech by Dr. Wormser. Dr. Wormsera – extreme view on the existence of the entity of chronic Lyme disease needs no repeating but does need rebuttal.
Physicians who have cared for persons with chronic Lyme disease have faced harassment at a minimum and for some, their careers have been ruined. Researchers who have seriously dedicated themselves to the scientific study of chronic Lyme disease in humans and/or animals have often found themselves attacked or marginalized. To persist in their researches would have resulted in virtual career suicide and some have been forced, by exigencies of survival, to leave the field.
Laboratories that test extensively for Lyme disease, including use of direct detection methods such as PCR, have found themselves subjected to concerted smear campaigns and harassed. Whereas PCR is a well-accepted method in virtually all other infectious diseases, its clinical use for Lyme disease has also been marginalized. Direct detection methods developed more than a decade ago by some of this country’A s finest physician-researchers and biomedical research scientists (Dorward DW, Schwan TG, Garon CF. Immmune Capture and Detection of Borrelia burgdorferi Antigens in Urine, Blood, or Tissues from Infected Ticks, Mice, Dogs, and Humans. J Clin Microbiol 1991;29:1162-1170 & Coyle PK, Deng Z, Schutzer SE, Belman AL, Benach J, Krupp L, Luft B. Detection of Borrelia burgdorferi antigens in cerebrospinal fluid. Neurology 1993;43:1093-1097 & Coyle PK, Schutzer SE, Deng Z, Krupp LB, Belman AL, Benach JL, Luft BJ. Detection of Borrelia burgdorferi-specific antigen in antibody-negative cerebrospinal fluid in neurologic Lyme disease. Neurology 1995;45:2010-5) have been moth-balled, I believe, for political and medical socioeconomic reasons.
Seronegativity, a well-recognized feature of spirochetal disease (e.g. in syphilis) is held to not need consideration despite early recognition of this phenomenon in Lyme disease, ironically, by a signer of the 2000 and 2006 IDSA Lyme disease guidelines (Dattwyler RJ, Volkman DJ, Luft BJ, Halperin JJ, Thomas J, Golightly MG. Seronegative Lyme Disease. Dissociation of T- and B-Lymphocyte Responses to Borrelia burgdorferi. N Engl. J Med 1988;319:1441-6).
That there is no active support by the Federal government for training programs for pathologists or support for pathological laboratories for in-depth pathological study of tissues from humans with chronic Lyme disease using all available methods (and which, hopefully, might develop new and superior methods) indicates a choice to remain in ignorance.
There could and there should be one or more such laboratories of highest scientific caliber where such methods could be made available to clinicians and researchers and their patients, comparable to the Armed Forces Institute of Pathology, which has been known for excellence in the study of syphilis.
A key formative influence in the creation of the National Institutes of Health was Metropolitan Life Insurance Company (Harden VA. Inventing the NIH. Federal Biomedical Research Policy 1887-1937.Johns Hopkins University Press. 1986. pp.57-59,114 & 122). It would be naive not to consider the possibility of ongoing behind the scenes influence of the insurance industry on N.I.H. policy.
Honest review of the worldwide peer-reviewed scientific literature reveals an abundance of evidence for the existence of chronic Lyme disease in humans and animals. Much of this evidence was presented to the Lyme Disease Review Panel of the Infectious Diseases Society of America on July 30, 2009. Regrettably, the panel chose to sustain the 2006 IDSA Lyme Disease Guidelines.
IDSA leaders were defiant from the outset asserting the Connecticut Attorney General could make them review the guidelines but that he couldn’t make them change them. In retrospect it was a serious strategic error to leave the review process within the hands and ultimately under the control of the IDSA itself.
The standard of care set by the IDSA 2006 Lyme disease guidelines is one of medical neglect of persons suffering from chronic Lyme disease.
However, such guidelines are indeed useful. They serve to shield from liability physicians who neglect persons with chronic Lyme disease. By misusing CDC case surveillance criteria as the sole basis for a clinical diagnosis of Lyme disease, these guidelines serve the insurance industry very well indeed because such cases represent but the tip of the iceberg of actual cases of Lyme disease, whether acute or chronic.
Denial of the possibility of seronegative Lyme disease, likewise serves the insurance industry well and also such simplistic constructs for Lyme disease also serve those physicians who cannot wrap their minds around the true complexity of this illness.
The medical profession and the United States Public Health Service, predecessor to the CDC, have a long history of medical neglect of persons suffering from spirochetal infection. The profession and the USPHS were completely unable to reform themselves from within in this regard.
It required moral and political intervention from without to bring the Tuskegee Experiment to an end with Senator Edward Kennedy’s hearings in February and March, 1973 before Committee of Labor and Public Welfare’s Sub-Committee on Health (Jones JH. Bad Blood: the Tuskegee Syphilis Experiment – a tragedy of race and medicine. The Free Press. New York. 1981 pp. 213).
The Tuskegee Experiment involved about 400 subjects. Lacking the taint of racism, nonetheless the “mainstream” handling of chronic Lyme disease affects far more people; it would be a fair estimate to say, Tuskegee X 10,000 in the United States alone. Furthermore, the standards held out by the CDC and the IDSA have worldwide influence. Canadians are unable to get care for chronic Lyme disease. We are seeing significant numbers of persons with chronic Lyme disease forced to leave Canada for care.
State legislators have begun taking matters into their own hands and the states of Rhode Island, Connecticut, California, New York, Massachusetts and Minnesota have passed laws or promulgated policies protecting physicians who treat persons with chronic Lyme disease. Are these legislators stupid? Are they dupes of Lyme activists?
Or can they see what is so obvious to the patients and to any good clinician, that Lyme disease can be a chronic infection that often requires a long-term treatment approach? Furthermore, as the disease spreads and more and more individuals are affected, legislator’s staffers, their wives, their children and they themselves are experiencing the effects of chronic Lyme disease.
In the fullness of time, the mainstream handling of chronic Lyme disease will be viewed as one of the most shameful episodes in the history of medicine because elements of academic medicine, elements of government and virtually the entire insurance industry have colluded to deny a disease.
This has resulted in needless suffering of many individuals who deteriorate and sometimes die for lack of timely application of treatment or denial of treatment beyond some arbitrary duration.
I am forwarding by mail copies of two of my abstracts and several published articles concerning such individuals for each panel member as I do not have these in PDF format (Liegner KB, Rosenkilde CE, Campbell GL, Quan TJ, Dennis DT. Culture-confirmed treatment failure of cefotaxime and minocycline in a case of Lyme meningoencephalomyelitis in the United States [abstract]. Programs and abstracts of the Fifth International Conference on Lyme Borreliosis, Arlington, VA, May 30-June 2, 1992. Bethesda,MD: Federation of American Societies for Experimental Biology; 1992: A11.& Liegner KB, Duray P, Agricola M, Rosenkilde C, Yannuzzi L, Ziska M, Tilton R, Hulinska D, Hubbard J, Fallon B. Lyme Disease and the Clinical Spectrum of Antibiotic-Responsive Chronic Meningoencephalomyelitides. J Spirochetal and Tick-borne Dis 1997;4:61-73 & Liegner KB. Lyme Disease: The Sensible Pursuit of Answers. (Guest Commentary). J Clin Microbiol 1993;31:1961-1963 & Liegner KB & Jones CR. Fatal progressive encephalitis following an untreated deer tick attachment in a 7 year-old Fairfield County, Connecticut child. [Abstract] VIII International Conference on Lyme Disease and other Emerging Tick-borne Diseases, Munich, Germany, June 1999 & Liegner KB, Shapiro JR, Ramsay D, Halperin AJ, Hogrefe W, Kong L. Recurrent Erythema Migrans Despite Extended Antibiotic Treatment with Minocycline in a Patient with Persisting B. burgdorferi Infection. J American Academy of Dermatology 1993;28:312-4.).
I urge the panel members to be scrupulous in considering all of the available evidence concerning the issue of chronic Lyme disease, to issue a report which will not be regarded as a whitewash for the IDSA 2006 Lyme Disease Guidelines, that it may acquit itself well in the eyes of history.
Very truly yours,
Kenneth B. Liegner, M.D.
For more information on the successful event and the new information presented there, please go to Part Two.
New or modified by Jenna Smith, on May 15th, 2012| I am sorry to say that I missed it. But thanks to Kettmann.com, we are all able to watch it, and download it to share with friends and family.
Please watch it now or later (the video is 40 minutes long.) Just follow these simple steps – courtesy of Channel 5, Boston Massachusetts, ABC-TV WCVB.
For Windows click here to watch streaming download.
For Apple click here to watch streaming download.
Click on SAVE FILE, and then OPEN after the file has been completely downloaded.
The file is large and will take some time to download. When it is finished, double-click on the GOM icon and the movie will open in a new window.
There is a button on the top right with 4 little boxes which will open the movie in full screen.
Enjoy!
New or modified by Jenna Smith, on May 15th, 2012| What is Colostrum?
Colostrum (for our purposes) is the pre-milk fluid produced by bovine mothers for the first few days after giving birth. (It is NOT milk, so those with milk allergies need not worry). Premier Research Colostrum comes from the best source of organically fed cows that have never been ill, not commercially fed cows which may cause adverse symptoms.
Superior whole colostrum concentrate; pesticide-free, 21% IgG (natural immunoglobulins), not defatted; superior gastrointestinal & immune support; good-tasting Super Food for the whole family*
Colostrum Benefits
- Immune booster - Colostrum naturally contains a broad range of amazing immune boosters: immunoglobulins, hormones, enzymes, growth factors, peptides and nucleotides. Further, colostrum is the richest source of non-synthetic, all natural MSM – a sulfur compound which helps fight infection.
- Top infection fighter – Recent studies show that colostrum has the power to severely inhibit or destroy the growth of many dangerous bacteria, viruses, fungi and parasites including E. coli, Helicobactor pylori, Listeria, rotaviruses, Streptococcus (many different varieties), Staphylococcus (many different strains), Salmonella, Shigella, Bacteroides, Berrelia, Clostridium, HIV and Candida albicans.
- Recovery after surgery or other injury extremely powerful healing support for the whole body.
- Rich in lactoferrin – supporting oxygen transport into the blood.
The Infection Terminator
Recent studies show that colostrum has the power to severely inhibit or destroy the growth of many dangerous bacteria, viruses, and funguses, including E. coli, Helicobactor pylori, Listeria, rotaviruses, Streptococcus (many different varieties), Staphylococcus (many different strains), Salmonella, Shigella, Bacteroides, Borrelia, Clostridium, HIV and Candida albicans.
The Best Colostrum
- 100% whole Colostrum
- Not defatted which compromises its intracellular transport
- From organically fed, happy cows not from commercial cows treated with drugs and synthetic hormones
- Low temperature, air-dried
- Not freeze-dried or highly heated
- Broad spectrum immune system support
- Contains human-active immunoglobulins with a whopping 21% minimum immunoglobulins (IgG and IgA)
- Richest source of natural MSM
- A sulfur compound which helps promote a strong and healthy immune system
- Rich in Lactoferrin (6 mg/gram)
- A natural compound which helps to pro mote healthy oxygen transport in the blood
- From organically fed, happy cows that have never been ill
- Free of synthetic hormones and toxic chemicals
- No hormones, antibiotic residues or other drugs
Real-Life Colostrum Stories
Sore Throat And Flu Cleared - Jamie, a two-year old child, had a sore throat and flu for 3 days. Jamie’s mother was reluctant to give her antibiotics. So she decided to give Jamie 2 capsules of the natural infection fighter, organic colostrum. Her mother opened the capsules and mixed the pleasant tasting colostrum into Jamie’s food. Jamie immediately began to feel better. An hour later, her mother gave her 2 more capsules. By the next morning, Jamie’s sore throat and flu symptoms were completely gone. Children typically respond very quickly to organic colostrum.
Pain Vanished – A 56-year-old man, Ron, began experiencing pain for no apparent reason in his left side near his kidney. After two months, the pain became constant and began to worsen. Even after numerous medical tests, Ron’s medical doctor was at a loss to explain the cause of the pain. Then Ron remembered his nutritionist had once said that if a symptom persists for no known reason, think “infection.” So Ron got out his bottle of organic colostrum and took 2 capsules 3 times per day. In 3 days, the pain was gone.
Flu Knock-Out – A 45-year-old man, Stan, always got one or two bouts of flu every winter. At the start of one very bad bout of flu with headache, stuffy nose and sneezing loudly, Stan decided to go get some antibiotics, when his wife intervened, offering him organic colostrum instead. Shortly after taking 2 capsules, Stan felt somewhat better. An hour later, he took 2 more and continued to improve. By the end of the day, he had taken 20 capsules of organic colostrum. The next morning, Stan was amazed to find that he felt perfectly fine. He said this was the first time one of his bouts of flu was knocked out after only one day. (Keep an extra bottle of organic colostrum on hand – for unforeseen circumstances.)
Raging Fevers Gone – A man in his 60′s, Frank, came by our office to thank us for the miraculous effects of organic colostrum which he had experienced. Lasting more than a year, he had kept getting high fevers and chronic night sweats. He had taken at least 6 courses of antibiotics which had not put a dent in his raging fevers. In fact, they had made his liver worse. After two months of taking 2 organic colostrum capsules per meal, his fevers and night sweats dramatically cleared. Now he has had no symptoms for over 6 months. Both he and his wife were very grateful.
Allergies Relieved – Ed, a 71-year-old man, suffered with gradual onset of adult allergies which had escalated to allergic reactions to literally every food he ate. He would sneeze, cough and feel sick after every meal, regardless of what type of food he ate. He then gingerly tried one organic colostrum. Surprised that he felt so much better, he then tried 2 capsules after the next meal. Finally, when he got up to 5 capsules per meal, he could eat again with no allergic reactions. His headaches, sneezing and allergic symptoms all cleared. He used 5 capsules per meal for about one month. Now he has found that he can use one capsule per meal and remain symptom-free.
Chronic Lyme Disease
About 10% of Lyme Arthritis victims do not get well by conventional medical treatments, and Congressman Bedell was one of those. Bedell, testifying before Congress, said, “I left Congress because I came down with Lyme Disease which I contracted while fishing at Quantico Marine Base, and which conventional treatment failed to relieve. After three series of heavy antibiotics infused into my veins over a period of two years, I finally turned to unconventional treatment. My symptoms disappeared and today I am clearly free of Lyme Disease.
“Let me tell you about that treatment. There is a company in our own state of Iowa, Mr. Chairman, that produces a product for livestock by injecting killed germs into the udder of a cow prior to the time the cow has a calf. When the cow has the calf they then take the first milk that the cow gives, which is called colostrum, and process it into whey so that it will keep.
“The theory is that the cow will communicate the disease to the unborn calf, and will develop the antibodies, or whatever, in the colostrum to protect the newly-born calf from that disease.
“After I took a teaspoon of this whey every 1-1/2 hours for a few weeks, my symptoms of Lyme [Arthritis Disease] disappeared, and I no longer suffer from that disease. Because of the publicity of my case, I get frequent phone calls from desperate people who have been unable to get relief from Lyme [Arthritis Disease] with conventional treatment. It breaks my heart that I cannot tell them about my treatment, because no one has been willing to spend the millions and millions of dollars necessary to get FDA approval to market this special whey. I can tell you it cured what appeared to be arthritis in my knee in 15 minutes.
“I have talked to a doctor in Wisconsin who was using this material. He claims 80-90% success in treating patients like me for whom conventional treatments have not been effective. He has now been advised by the Iowa producer that the material will no longer be available because the producer is afraid of the FDA.”
It could have been added that the US Department of Agriculture can also act as a strong deterrent, preventing crossing the line from animals to humans.
We hope and pray for a much more mature Department of Agriculture and FDA who will grant permission to renew studies on the use of this already well-developed technology. These products especially prepared for maintaining the health of farm mammals should be easily available for us, too. After all, weaEAAAÂre also mammals, and deserve equal consideration.
Most experts agree that the highest quality colostrum is produced by Premier Research (formerly Quantum Research).
A dietary supplement called Biomune OSF Plusa¢ (under the Quantum label) contains an extract from colostrum and whey acquired from immunologically stimulated cows. This extract (100 mg) is combined in capsule form with a Chinese herb, Astragalus membranaceus (200 mg), in a base of rice powder. The product was developed by Quantum Research, Inc. a biotech research company that develops nutritional supplements and homeopathic remedies, of Scottsdale, Arizona. The synergistic action of the extract with the Chinese herb helps to stimulate natural killer cell (NK) activity. Stanley Olsztyn, M.D., Jesse Stoff, M.D. and other health professionals have had very good results with this product. In a population of 107 participants (59 females, 48 males, average age 53 years ranging from 17 thru 83) initial killer cell activity was 18 Lytic Units (a measure of killer cell activity) and the final killer cell activity was 246 Lytic Units, an average of 28.556 Lytic units increase per month, or an average of improvement as measured by killer cell activity of 1,267% per month.
By comparison, the average NK cell activity in the U.S. population is 20-50, whereas in a healthy population it is 150-225.
Accompanying this dramatic increase in Natural Killer T cell activity were vast improvements in the population of 107 consisting of 50% cancer patients, 30% chronic fatigue syndrome, and the remaining 20% a mixed bag of lupus, allergies, fibromyalgia, blood disorders, hepatitis C, colitis, chronic infections, recurrent infections, autoimmune diseases, and cervical dysplasia/metaplasia.
Average time of treatment was 13.2 months taking from 2 to 8 capsules daily.
It should not be necessary to point out that these are remarkable improvements or remissions of many so-called incurable diseases.
Premier Research produces Pure Colostrum available here at a reasonable price.
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