BORRELIOSIS - LYME DISEASE'S KNOWN INVOLVEMENT WITH MENTAL HEALTH

Borreliosis (Lyme Disease) and its known involvement with Mental health by Denise Longman

Scientists and physicians across the world have discovered that the growing numbers of people with mental illness and diseases of the nervous system are being cured or improved by treatment with antibiotics. In other words, it is now known that bacteria can make you mentally ill as well as physically ill!

From Croatia to California, from Sweden to Sicily, conditions such as Schizophrenia and Multiple Sclerosis, even Alzheimer's disease and Stroke, are being found to have common to all one of the most insidiously infective bacteria on the planet, namely Borrelia.

This organism is similar to the bacterium that causes Syphilis, which was once the major cause of mental ill health before the days of penicillin. Both bacteria are large and spiral in shape, but Borrelia is turning out to be far worse than its cousin. Syphilis could be detected fairly easily and then killed with antibiotics, but Borrelia is harder to find, and then it is even more difficult to eradicate. Because it causes such a wide range of symptoms, from mild 'flu-like fever to a rapid onset of psychosis, or from strange rashes to sudden heart-block, this nasty bacterium has spread without most of us realising it, around the world, in what is now being called a pandemic.

Perhaps its most miserable victims are those with hallucinations, panic disorders, manic depressive illness and ADHD, as well as those with the labels of Chronic Fatigue Syndrome and Myalgic Encephalomyelitis; for although the latter two conditions are recognised to be of a bacterial / viral cause by the World Health Organisation, the British medical establishment employees predominantly psychological intervention alone. Imagine being confined to a secure mental hospital, or treated with powerful antipsychotic drugs, or living for decades struggling to maintain normal memory and behaviour patterns,when all along there has been an infection secretly living in your brain and nerves. This bacterium may sometimes be the cause of anorexia, while in some of its victims it has been known to cause episodes of uncontrollable rage.

Other bacteria and viruses can wreak similar havoc: some of the ones that live harmlessly in our throats and on our skin are also able to invade our brains. Doctors and scientists are quite ready to acknowledge and search for things like HIV, Streptococcus and Herpes.But it is only recently that they are becoming aware that the Borrelia bug, one of the hardest to positively identify because of its so-called "stealth " behaviour, must be high on the list for diagnosis.

European countries such as Austria, Germany, Holland and France, have alerted their GPs and specialists to the growing problem of Borrelia. Germany has twice polled every doctor in the country to determine the probable infection rate, and has found that it has doubled in the last 10 years. The Dutch have carried out similar surveys. In Austria, every GP's waiting room has warning signs about Borreliosis.The disease is being spread by ticks that are carried on birds, on wild animals and on pets such as cats and dogs, even on horses. It has been found inside the stomachs of biting flies such as horseflies and cleggs and also in mosquitoes and mites.

We present here several medical studies published in recent literature,which link mental illness and brain disease to known Borreliosis infection. There were few to be found that had been carried out in Britain; those quoted here are from the rest of Europe and the United States.

a)In a controlled study undertaken at Columbia University Department of Psychiatry, 20 children were examined following known infection of Borrelia burgdorferi (Bb), and were found to have significantly more psychiatric and cognitive difficulties. Their cognitive abilities were found to be below that of 20 matched healthy control subjects,even taking into account any effects due to anxiety, depression and fatigue during education. The study also discussed the long-term effects of the children’s infection with Borrelia, which had brought about neuropsychiatric disturbances and caused significant psychosocial and academic impairment.

b)An elderly lady treated at the Emperor Franz Josef hospital, Vienna,was initially admitted with suspected Motor Neuron Disease. Testing of fluid from her spinal column indicated the presence of Bb.Following antibiotic treatment, improvement was seen in the patient’s clinical symptoms, and further testing of spinal fluid demonstrated a positive response to the antibiotic treatment. The preliminary diagnosis of amyotrophic lateral sclerosis (ALS) was revised to one of chronic neuroborreliosis, the term given to infection of the central nervous system (CNS) by Bb.

c) A 64-year old woman was admitted to the psychiatric ward of the Sophia Ziekenhuisat Zwolle, in Holland. She was suffering from psychosis, with visual hallucinations, disorientation in time and space, and associative thinking. Psychotropic drugs failed to produce any improvement in her condition and further, neurological, symptoms developed. A lumbar puncture revealed the presence of Borrelia burgdorferi and after treatment with penicillin all of her psychiatric and neurological symptoms were resolved. From the history, which the woman was then able to communicate, it appeared she had been bitten by ticks. Her husband, aged 66, passed through a similar episode of disease

d)In a comparative study carried out at the Prague Psychiatric Center,the blood of 926 psychiatric patients and that of 884 healthy control subjects was screened for four different types of antibodies to Borrelia burgdorferi. Of 499 matched pairs (meaning of similar age and gender but from patient and control group respectively) 166 (33%)of the psychiatric patients and 94 (19%) of the healthy comparison subjects were seropositive in at least one of the four test assays for Bb. This study supports the hypothesis that there is an association between an infection of Borrelia burgdorferi and psychiatric morbidity.

e)It has been well documented in numerous published medical studies of Borrelia's ability to cause many recognized personality disorder sand forms of depression; such as anxiety, depression, confusion,aggressive behaviour, mild to moderate cognitive deficits,fatigue,memory loss, and irritability. As such, the American Psychiatric Associations recommends that specialist doctors and counselors alike should seek to rule out Borreliosis as a possible differential diagnosis before commencing with any form of psychological intervention.

f)At the University of Rostock in Germany, a 42-year old female patient presented with schizophrenia-like symptoms but a complete lack of neurological signs. A brain scan and investigation of the spinal fluid led to the diagnosis of Lyme disease. There was complete relief of symptoms after antimicrobial therapy.

g)In a study of patients at a Boston, MA, hospital, scientists looked at patients with a history of Lyme disease who had been treated with short courses of antibiotics. As well as many physical symptoms, such as musculoskeletal impairment, the Lyme sufferers were found to have highly significant deficits in concentration and memory. Those who had received treatment early in the course of the illness had less long-term impairment.

h)At the Kanazawa University School of Medicine in Japan, a 36-year old woman with severe chronic Encephalomyelopathy was shown to have a very high level of antibodies to Borrelia burgdorferi. She showed severe cerebellar ataxia (walking and balance difficulties due to disease in the cerebellum) and profound mental deterioration. The disease had probably been acquired while she had been in the USA. The autopsy 4 years later showed the presence of spirochaetes throughout the brain and spinal cord, which together with the antibody evidence,demonstrated that the Lyme bacteria had caused this encephalitic form of neuroborreliosis.

i)Dr B. A. Fallon and his team at Columbia University Medical Centre in New York have done extensive studies on both adults and children with Lyme disease. They describe numerous psychiatric and neurological presentations of the disease, and show that it can mimic attention deficit hyperactivity disorder (ADHD), depression and multiple sclerosis. In another study, the same team found panic disorder and mania could be caused by Borrelial infection.  

j)Scientists from Vancouver, Canada, and Lausanne, Switzerland,recently looked at post-mortem brain tissue samples from 14 patients who had had Alzheimer’s disease and compared them with 13 controls.All of the Alzheimer’s brains had infection with Borrelia-type organisms, compared to none of the controls. From 3 of the Alzheimer’s cases, they were able to carry out genetic and molecular analyses of these spirochaetes to prove beyond a doubt that they were Borrelia.

k)Following the detailed statistical analysis of all published literature on schizophrenia, (with the criterion that each study had to have detailed histories for at least 3000 patients), Swiss scientist Dr Mark Fritzsche was able to demonstrate that: "globally there is a striking correlation between seasonal and geographical clusters of both Multiple Sclerosis and Schizophrenia with the worldwide distribution of the Lyme bacteria." Yearly birth-excesses of such illnesses were found to mirror, with an intervening nine-month period, both the geographical and seasonal patterns of various types of Ixodes tick. He also went on to further state “In addition to known acute infections, no other disease exhibits equally marked epidemiological clusters by season and locality, nurturing the hope that prevention might ultimately be attainable.”

l)Chronic fatigue syndrome has been found to be associated with infection by Borrelia. A study by the Department of Neurology at the University Hospital of Saarland in Homburg, Germany, investigated blood samples from 1,156 healthy young males, without knowing which ones were suffering from CFS. They saw a significant number with CFS sufferers who had Borrelia antibodies even though there were no other signs of borreliosis symptoms. They state that antibiotic therapy should be considered in patients with Chronic Fatigue Syndrome who show positive Borrelia serology.

m)Dr R. C. Bransfield in New Jersey, has found a significant number of Lyme patients exhibit aggression. Patients were described with decreased frustration tolerance, irritability, and some episodes of explosive anger which he terms “Lyme rage”. In relatively rare cases, there was uncontrollable rage, decreased empathy,suicidal tendencies, suicide, homicidal tendencies, interpersonal aggressiveness, homicide and predatory aggression.

The World Health Organisation has warned that mental illness appears to be increasing globally, and that depression will soon become the second biggest cause of disease on the planet. In Britain, it is estimated that new-onset psychoses have reached the annual level of 30 per 100,000 of the population. According to recent announcements,although there are at present about 900 consultant psychiatrists employed in the UK, with 400 posts vacant, there are plans to recruit 7,500 new psychiatrists in the next 5 years, a massive 5-fold increase.

The European Committee for Action on Lyme Borreliosis (EUCALB) has published epidemiological studies showing that there is a serious problem with tick-borne Borreliosis in Europe. For example, the UK’s nearest neighbour, Holland, has found 73 cases per 100,000 of the population per year, with an unknown number of missed diagnoses. The published figures for England, Ireland and Wales appear to be nearly2 orders of magnitude lower than this, with only 0.3 cases per 100,000. Are cases of Lyme disease / Borreliosis not being found in Britain because it is still regarded as a rare disease in this country? Or do we genuinely have the lowest incidence in the world? Diagnosis of borreliosis is difficult, with tests for antibodies to the bacteria being the subject of great controversy at present. If a consultant has to look at a suspected case of the disease and believes it to be rare, and blood tests are unreliable, then the diagnosis will be biased, quite understandably, towards the patient having some other condition.

It is hoped that health professionals at all levels, and in all disciplines, will come to realise that Human Borreliosis is the fastest-growing, most prevalent zoonotic disease in the world, and has been called a modern pandemic by several authors, including epidemiologists, rheumatologists, neurologists and infectious disease experts. There seems to be little awareness in the UK at present about this situation, but we urge that it be recognised sooner rather than later, in the hope that both mental and physical illnesses due to Borrelia are successfully diagnosed and treated.

References

a) A Controlled Study of Cognitive Deficits in Children

with Chronic Lyme disease.
Tager, F.A., Fallon, B.A., Keilp, J.,Rissenberg, M., Jones, C.R.,

Liebowitz,M.R.

JNeuropsychiatry Clin. Neurosci. 2001; Fall; 13(4): 500-7.

b) ALS-Like Sequelae in Chronic Neuroborreliosis.

Hansel,Y., Ackerl, M., Stanek, G.
Wien. Med. Wochenschr. 1995; 145(7-8):186-8.

c) Lyme Psychosis.

vanden Bergen, H.A., Smith, J.P., van der Zwan, A.

Ned.Tijdschr. Geneeskd. 1993; 137(41): 2098-100.

d) Higher Prevalence of Antibodies to Borrelia burgdorferi in Psychiatric Patients than in Healthy Subjects.
Hajek, T., Paskova, B.,Janovska, D., Bahbouh, R., Hajek, P., Libiger, J., Hoschl, C.

Am.J. Psychiatry 2002; 159(2): 297-301.

e) Highlights of the 2000 Institute on Psychiatric Services

Guardiano,J.J., von Brook, P.

Jan.2001, 52(1): 37-42.

f) Borrelia burgdorferi Central Nervous System Infection

Presenting as Organic Psychiatric Disorder.

Hess,A., Buchmann, J., Zettel, U.K., et al.

Biol.Psychiatry 1999; 45(6): 795.

g) The Long-term Clinical Outcomes of Lyme disease. A Population-based Retrospective Cohort Study.

Shadick,N.A., Phillips, C.B., Logigian, E.L., Steere, A.C. et al.

Ann.Intern. Med. 1994; 121(8): 560-7.

h) Borrelia burgdorferi Seropositive Chronic Encephalomyelopathy: Lyme Neuroborreliosis? An Autopsied Report.
Kobayashi, K., Mizukoshi,C., Aoki, T., Muramori, F.et al.
Dement. Geriatr. Cogn. Disord.1997; 8(6): 384-90.

i) (1) Late Stage Neuropsychiatric Lyme Borreliosis.

Fallon,B.A., Schwartzburg, M., Bransfield, R., Zimmerman, B. et al.

Psychosomatics1995; 36(3): 295-300

(2) Functional Brain Imaging and Neuropsychological Testing in Lyme Disease.

Fallon,B.A., Das, S., Plutchok, J.J., Tager, F. et al.

Clin.Infect. Dis. 1997; Suppl.1: 557-63.

j) Borrelia burgdorferi Persists in the Brain in Chronic Lyme

Neuroborreliosis and may be associated with Alzheimer disease.

Miklossy,J., Khalili, K., Gern, L., Ericson, R.L., et al.

J.Alzheimer’s Dis. 2004; 6(6): 639-649.

k) (1) Chronic Lyme Borreliosis at the root of Multiple Sclerosis - is a cure with

Antibiotics attainable?

Fritzsche,M.

MedHypotheses 2005; 64(3): 438-48.

(2)Geographical and Seasonal Correlation of Multiple Sclerosis to Sporadic

Schizophrenia.

Fritzsche,M.

Int.J. Health Geog. 2002; 1: 5.

l) Chronic Fatigue Syndrome in Patients with Lyme Borreliosis.
Treib,J., Grauer, M.T., Haas, A., Langenbach, J. et al.

Eur.Neurol. 2000;  43(2): 107-9.

m) Aggression& Lyme disease.

Bransfield,R.C.

14th International Scientific Conference on Lyme Disease and other Tick-borne Disorders.April 22-23, 2001, Hartford, Connecticut.

OVER RELIANCE ON TEST RESULTS! WE NEED CLINICAL DIAGNOSIS

A recent Freedom of Information request to the Health Protection Agency on the number of samples tested for Lyme Disease resulted in the following:-

In 2009/10, there were 14,093 samples submitted and the number of positives that year was 867.

That is 6%.

The above if analysed closely is rather shocking.

The figures relate to samples tested in England and Wales because Scotland having a separate HPA keep separate figures. An earlier post about the figures is here

These above samples relate to the second of a two tier testing protocol.

So in general all these 14,093 samples from patients will have been sent by their doctors because they are suspected of having Lyme Disease.

In essence doctors consider Lyme Disease to be so rare in the UK because that is what they are taught at Med school.

The experience of many patients is that doctors are reluctant to consider Lyme Disease even when patients present with a Bulls Eye rash, the Hall Mark of Lyme Disease.

If in fact a doctor considers the possibility of Lyme Disease the initial test is the Elisa, which by many doctors experienced in treating Lyme Disease is considered next to worthless because of it's false negatives and false positives.

However if a patient gets a positive Elisa then eventually, if they are lucky and their sample does not get lost( which seems to happen not infrequently) their samples are forwarded to the Lyme reference unit at Southampton for the final test the Western blot, of which the above figures relate to.

The HPA constantly say that the Western Blot is the best available test but what they fail to say is that there is a considerable body of research which shows the problems over the Western blots which can in fact miss up to 50% of cases ( Steven Phillips presentation to IDSA review panel is a useful reference for this where he presents 25 studies on seronegativity and persistent infection here and here as well as other presentations from ILADS website here ).

Even the makers of the test kits Trinity Biotech say

"B. burgdorferi strains exhibit considerable antigenic variation. Patients often develop early antibodies to the flagellar antigen which can be cross reactive. Patients in the early stage of disease and a portion of patients with late manifestations may not have detectable antibodies. Early antimicrobial treatment, after appearance of EM may lead to diminished antibody concentrations. Serologic tests have been shown to have low sensitivity and specificity and, therefore, cannot be relied upon for establishing a diagnosis of Lyme disease (6,7,8). The Second National Conference on Serological Diagnosis of Lyme disease (1994) recommended the use of a two-tier test system for Lyme serology in which positive and equivocal samples from a sensitive first-tier test must be further tested by a more specific method such as Western blot (second tier). Positive results in the second tier test provide supportive evidence of exposure to B. burgdorferi which could support a clinical diagnosis of Lyme disease but should not be used as a criterion for diagnosis (9). "

This information is not being relaid back to our doctors.

So what of those 14093 less 867 = 13226 patients?

Are they still struggling with symptoms which have now become chronic?

Have they like me and many others been dismissed as having Fibromyalgia, ME/CFS, an imaginary all in your head diagnosis, or worse some neurological or Psychiatric disorder and treated on palliative drugs when perhaps antimicrobial therapy would have been more appropriate?

What of the many more patients who failed the initial Elisa and never got to have a Western blot?

What of the many patients who never suspected their illness could be the result of a tickbite or whose doctors never suspected Lyme Disease?

What of the many other tick borne illnesses that are rarely ever tested for here in the UK?

Will our UK 'expert' open her mind and start to redress the problems after listening to the presentations at the recent Institute of Medicine-

A Workshop on the Critical Needs and Gaps in Understanding Prevention, Amelioration, and Resolution of Lyme and Other Tick-borne Diseases: the Short-Term and Long-Term Outcomes here

her presentation and links to the conference can be found here

or will doctors remain ill informed and patients remain without adequate care?

Until better tests can be found patients need better clinical diagnosis.

RESEARCH GAPS IN TICKBORNE DISEASES

Congressional Record
111th Congress (2009-2010)

ISSUES REGARDING LYME DISEASE -- (Extensions of Remarks - September 29, 2010)
http://thomas.loc.gov/cgi-bin/query/z?r111:E29SE0-0367:

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---SPEECH OF
HON. CHRISTOPHER H. SMITH
OF NEW JERSEY
IN THE HOUSE OF REPRESENTATIVES
WEDNESDAY, SEPTEMBER 29, 2010

Mr. SMITH of New Jersey. Madam Speaker, as chair of the congressional Lyme Disease Caucus and a person who has been closely involved in Lyme disease issues for over twenty years, I want to bring to your attention extremely troubling issues regarding Lyme disease.

Lyme disease is the most common of all vector-borne infections in the U.S., with approximately 290,000 new cases in 2008. With the increase in Lyme cases, problems due to poor diagnostics and ineffective treatments for Lyme disease have become almost overwhelming--affecting larger numbers of people over longer periods of time.

Many patients are angry because progress in addressing Lyme disease has been impeded by entrenched bias and a lack of accountability in the science of tick borne diseases. It is critical that we identify biases and impediments that are constraining the science on Lyme and to open up the dialogue to honest and transparent debate. The scientists who have long been marginalized, the treating physicians who have felt intimidated and threatened, and most importantly the sick patients and their families need our help.

My main purpose here today is to introduce for inclusion in the Congressional Record the following statement ``The Patient Perspectives on the Research Gaps in Tick Borne Diseases,'' written by three of the Nation's largest Lyme disease advocacy organizations, who represent tens of thousands of patients. I believe that this statement provides important perspectives that need to be heard and taken to heart.

PATIENT PERSPECTIVES ON THE RESEARCH GAPS IN TICK BORNE DISEASES

(Submitted by Time for Lyme, the national Lyme Disease Association, and the California Lyme Disease Association on behalf of our patients across the United States)

In December 2009, Labor HHS 2010 appropriations language, signed into law by President Obama, encouraged the National Institutes of Health (NIH) to ``sponsor a scientific conference on Lyme and tick-borne diseases ..... the conference should represent the broad spectrum of scientific views ..... and should provide a forum for public participation and input from individuals with Lyme disease.'' The language also requires NIH to identify research gaps to understand the ``mechanisms of persistent infection.'' The passage of this language represents a significant opportunity to summarize and solidify the issues that prevent scientific progress for a disease recognized here for 35 years, if, and only if, this process occurs without bias. Progress can be accomplished if the stewards commit to the elimination of predisposition by key decision makers.

It is not clear why the NIH elected to subcontract this issue to the Institute of Medicine (IOM), given that the existing NIH conference structure contains the best process to address the appropriations language requirements. According to the NIH Consensus Development Program, which explains the two relevant types of conferences offered by NIH, ``when the available evidence is weak or contradictory, or when a common practice is not supported by high-quality evidence, the State-of-the-Science label is chosen.'' This conference format would appropriately address the research gaps that exist for Lyme and tick-borne diseases as it provides a ``snapshot in time'' of the state of knowledge on the conference rather than a policy statement of the NIH or the Federal Government.

In Lyme disease, there are two distinct disease paradigms, each providing science to support its claims. One paradigm views the disease as ``hard to catch and easy to cure'' and denies the existence of chronic Lyme disease--persistent infection with Borrelia burgdorferi, the spirochete that causes the disease. Under this paradigm, the state of the science for patients with chronic Lyme disease is closed. Any treatment is considered too risky because practitioners are unable to determine the cause or extent of patient symptoms, or they view the symptoms

[Page: E1873] GPO's PDFas insignificant and write off the patients' complaints as psychiatric in nature. This leaves seriously ill patients without any viable therapeutic avenues. It also shuts the door on future research necessary to get patients to a state of wellness.

The alternative paradigm says that the science is too unsettled to be definitive and there can be one or more causes of persistent symptoms after initial treatment in an individual who has been infected with the agent of Lyme disease. These causes include the possibility of persistent infection, or a post-infectious process, or a combination of both, with the Lyme bacterium itself driving the autoimmune process. This paradigm allows doctors the ability to exercise their clinical judgment and provide therapies that are helping their patients.

Patients with Lyme disease need a research agenda that reflects outcomes that matter to patients, namely effective diagnostic tools and effective treatments that restore them to health. The reason there are two disease paradigms in Lyme disease is because central pieces of the puzzle are missing or are inadequate. The first area of concern involves testing.

There are no reliable biomarkers of the disease.\1\ Current diagnostic tests commonly used do not detect the spirochete that causes Lyme disease, rather, they detect only whether the patient has developed antibodies to the pathogen. Antibody production, if it registers on the tests at all, takes weeks to appear, thus rendering the current tests ineffective in the earlier and more easily addressed stage. Additionally, the Lyme antibody has been shown to form a ``complex'' with the bacterium itself--and tests cannot detect ``complex'' antibodies. Once triggered, antibody reactions may remain long after an infection has been treated, also clouding the diagnostic and treatment picture.

The two-tier testing system endorsed by the Centers for Disease Control and Prevention (CDC) is very specific for Lyme disease (99%), so it gives few false positives. But the tests have a uniformly low sensitivity (56%)--missing 88 of every 200 patients with Lyme disease. By comparison, AIDS tests have a sensitivity of 99.5%--missing only one of every 200 infected patients.\2\ Sensitive AIDS tests were developed less than 10 years into the disease, while archaic Lyme tests remain unreliable 35 years later. There is a critical need for research exploring newer technologies such as polymerase chain reaction (PCR), which is used with many other diseases, and cutting-edge proteomics. Strain variations and co-infections with other organisms, often transmitted by the same tick bite, obscure the diagnostic picture further.

A vast number of strains of Borrelia burgdorferi have been identified. Variation in strain may cause differing symptoms or severity of symptoms as well as determine the appropriate antibiotics and duration of treatment needed to clear the infection.\3\ Different strains may also express different proteins. Preliminary research shows that proteins need to be examined to find the ones most often expressed, then using microarray technology, doctors may be able to diagnose patients using a chip which contains the proteins.

Research is needed concerning the role of mutation on persistence. Some research indicates that bacteria can exchange genetic material, probably contributing to its ability to invade different systems in the body--some may have a proclivity for the heart muscle, others for the brain, and some for muscles and joints. By exchanging genetic material, bacteria may be able to form a symbiotic relationship to avoid detection by the immune response or to further invade the body.

To date, every NIH-funded treatment research study has been designed using the inaccurate diagnostic test results as part of the entry criteria. The entry criterion in these studies excluded the vast majority of Lyme patients and created sample sizes too small (less than 220 patients to date) to detect clinically important treatment effects or generalize to the clinical population. Moreover, Lyme has not attracted industry funding for treatment approaches, which places the disease at a considerable research disadvantage. To detect clinically relevant treatment effects requires much larger treatment trials with sample populations that reflect those seen in clinical practice.\4\

One thing that past research has demonstrated is that patients with Lyme are a heterogeneous population. Hence, the course of illness and responsiveness to treatment may vary depending on the duration of onset of the disease to its diagnosis and treatment, the presence of co-infections, comorbid factors, other genetic characteristics of the patients, and the virulence of the strain(s) with which the patient is infected. Research sample populations must reflect those seen in clinical practice to yield clinically relevant results.

As advised by the Appropriations language, research on the pathophysiology of Lyme disease is necessary. Research projects need to be designed which determine the course of the disease from inception, and which utilize treatments that effectively interfere with the mechanisms that allow the infection to persist. Little to no government sponsored science has been dedicated to the effects on persistence of the different forms of the Lyme bacterium (cyst vs. flagellar), the role, if any, of biofilms, sequestration of the organism from the immune system, the exchange and mutation of genetic material of the spirochete, and the role that components of the bacterial genome may play in protecting it from eradication by the immune system or antibiotics. Understanding the pathology of the organism can greatly enhance targeted diagnostics and treatment modalities.

Patients also need studies that explore a range of treatment options. The ideal antibiotics, route of administration, and duration of treatment for any stage of Lyme disease are not established. No single antibiotic or combination of antibiotics appears to be capable of completely eradicating the infection in all patients, and treatment failures or relapses are reported with all current regimens, although they are less common with early aggressive treatment.\5\ Treatment failure rates suggest the need to re-examine the effectiveness of the currently recommended monotherapy as a treatment approach. Studies need to explore combination treatments and longer term treatment regimens, which have been critical to the successful treatment of AIDS and tuberculosis.

Patients need the type of outcomes research advocated by the IOM to examine how well treatments are working in actual clinical practice.\6\ While not all patients with chronic Lyme disease have returned to a state of wellness, many have, and we need to find out how and why. This information can then be applied to other patients and used to establish a research agenda for treatment that has a likelihood of success, rather than abandoning patients based on limited treatment trials.

The IOM process does not allow these research ideas to be heard in an unbiased and transparent fashion with balanced divergent viewpoints. While the NIH process precludes bias on the part of panel members, the IOM does not. Four of the six members of the IOM panel that have been selected belong to IDSA, a medical society that has a known bias against chronic Lyme disease diagnosis and treatment. Rather than providing curative treatments that restore health, the IDSA would provide costly and long term palliative treatments, presumably for life. While the NIH requires participation by major stakeholders (including patients and treating physicians), the IOM does not.

The summary of the IOM proceedings will reflect this pervasive lack of objectivity, undermining its integrity and credibility. Additionally, much IOM deliberation is done behind closed doors and an anonymous panel will be permitted to comment on the written record. Because of such flaws in the IOM proceedings, the three largest patient interest groups who were offered a brief opportunity to speak (TFL) at the IOM October 2010 meeting and an opportunity to provide a commissioned paper--CALDA, the LDA and TFL--pulled out of the conference in protest.

From a research perspective, strongly held paradigms can create a closed loop, and experiments may be designed, implemented and interpreted to support a particular viewpoint.\7\ The antidote to bias is to balance scientific perspectives and to ensure that all scientific viewpoints are being heard and explored. Given the extraordinary stream of federal funding granted to researchers who support the closed paradigm which was created and is supported by the Infectious Diseases Society of America (IDSA) and their vested interest in maintaining the status quo, it is not reasonable to expect this group of researchers to serve as neutral arbiters of scientific debates over competing scientific paradigms. For example, Lyme related panels dominated by IDSA have time and time again excluded opposing viewpoints from participating or controlled the review process to ensure outcomes that reinforce the IDSA paradigm. If past is prologue, it is obvious what the future holds for panels dominated by one group.

Worse, the small treatment trials that have been conducted have been given an undue amount of weight by IDSA researchers and in its guidelines and used to apply a degree of certainty on the science that far exceeds the limitations of the small sample sizes of the studies. Further, they claim that the state of the science is sufficient to determine with certainty that chronic Lyme disease does not exist, is not treatable with antibiotics, and that no further research on this topic is needed. Sample size affects the strength of the conclusions that may be drawn from them: ``Providing definitive answers in the face of low event rates and small-to-moderate treatment effects necessitates sample sizes in the thousands or tens of thousands. ..... Funding for such mega-trials is very limited, and is often restricted to industry sources.'' \8\

For that reason, the Connecticut Attorney General antitrust investigation into the development process of IDSA Lyme guidelines found exclusionary practices and suppression of divergent viewpoints on the part of IDSA panels that crafted IDSA 2000 and the 2006 Lyme disease guidelines. Although IDSA settled the investigation with the Attorney General by agreeing to review its guidelines with a panel without conflicts of interest, the control of the process was in the hands of IDSA, which again selected a panel consisting almost exclusively of IDSA members and excluding treating physicians who held divergent viewpoints.

It was patients who pressed for the language in the Appropriations bill that called for a review of the state of the science of Lyme disease. However, patients need that process to occur in a transparent manner, without bias, and with the participation of all stakeholders. Albert Einstein defined insanity as ``doing the same thing over and over again and expecting different results.''

[Page: E1874] GPO's PDFThis process is a perfect example of that insanity.
Patients want research which will restore their health. Their voice and the voice of the clinicians must be given the necessary weight to legitimize the research agenda and the research process. Truth in science can be achieved through open debate in an independent process free from bias and conflicts of interest. The scientific process fails when one side of a debate controls the arena and sets the rules to ensure that its viewpoint prevails.

Lorraine Johnson, JD, MBA, Chief Executive Officer, California Lyme Disease Association.

Patricia V. Smith, President, Lyme Disease Association, Inc.

Diane Blanchard/Deb Siciliano, Co-Presidents, Time for Lyme, Inc. ENDNOTES

\1\ Steiner I. Treating post Lyme disease: trying to solve one equation with too many unknowns. Neurology 2003; 60:1888-9.

\2\ Stricker RB, Johnson L. Lyme wars: let's tackle the testing. BMJ 2007; 335:1008.

\3\ Weintraub P. What we don't know about Lyme. Experience Life Magazine June 2009.

\4\ Guyatt GH, Mills EJ, Elbourne D. In the era of systematic reviews, does the size of an individual trial still matter. PLoS Med, 2008; 5:e4.

\5\ Hunfeld KP, Ruzic-Sabljic E, Norris DE, Kraiczy P, Strle F. In vitro susceptibility testing of Borrelia burgdorferi sensu lato isolates cultured from patients with erythema migrans before and after antimicrobial chemotherapy. Antimicrobial agents and chemotherapy 2005; 49:1294-301.

\6\ Institute of Medicine (Committee on Quality of Health Care in America). Crossing the Quality Chasm: A New Health System for the 21st Century. Washington, DC: National Academies Press, 2001.

\7\ Ernst E, Canter PH. Investigator bias and false positive findings in medical research. Trends Pharmacol. Sci. 24(5), 219-221 (2003).

\8\ Guyatt GH, Mills EJ, Elbourne D. In the era of systematic reviews, does the size of an individual trial still matter. PLoS Med, 2008; 5:e4.

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For detailed information leading to the above Speech see CALDA blog at Lyme Policy Wonk

PSYCHIATRIC ILLNESS AND LYME DISEASE

Letter to the editor from Robert Bransfield MD

It is encouraging that Pennsylvania is considering Lyme and related tick-borne disease education, prevention and treatment legislation.

As a psychiatrist, I work with late-stage Lyme patients and have treated thousands of well-documented cases of Lyme and tick-borne diseases that could have been avoided by earlier and more effective intervention.

Unfortunately, this epidemic is exacerbated by a highly restrictive approach and misinformation propagated by a small but highly influential group of individuals who appear to lack vision or have competing interests and deny the full breadth and depth of this epidemic.

There are many forward thinking, highly motivated and compassionate physicians who recognize the seriousness of this epidemic.

Their freedom to help their patients with their best clinical judgment and a fair and balanced review of the medical literature should not be hampered.

see more here

ROBERT C. BRANSFIELD MD
PresidentInternational Lyme
and Associated Diseases Society
www.ilads.org

AN AVOIDABLE TAX BURDEN

Lyme Disease positive NHS serology England and Wales

for 2009 -867

a 6 fold increase in ten years!!

link here

02 June 2010
Tick awareness for the Scottish summer
link here
Earlier in May, the Health Protection Agency (HPA) produced advice on tick risks in the great outdoors.

1 Late spring, early summer and autumn are peak times for tick bites and coincide with people venturing into the more rural areas for the warmer weather.
The National Lyme Disease Testing Laboratory in Inverness has seen a dramatic increase in Lyme borreliosis in Scotland which it estimated in 2009 at 5.9/100,000 population but with an incidence rate of 43.4/100,000 population in the Highlands of Scotland.

2 During the months of July to September the incidence rate can double.An assessment of Lyme borreliosis has shown also that clinical features in Scotland have differences to other countries.

3 It is worth noting that only 59% of seropositive patients could recollect having a tick bite. This underlines the importance of patients having regular inspections of their bodies after exposure. Only 57% of seropositive patients had the characteristic erythema migrans rash and this is lower than other published reports.The urban and rural risks of Lyme borreliosis have also been recently studied.

4 Those living in the more rural areas of the Highland region had the greatest risk of acquiring the infection, especially if within 200m of woodland. The HPA advice is very relevant to Scotland and it is important to raise tick awareness.Ticks are very small (about the size of a poppy seed), and can easily be overlooked, so it is important to check regularly. Most ticks do not carry the infection. If one is found it should be removed promptly, as infected ticks are unlikely to transmit the organism if they are removed in the early stages of attachment. Ticks can be removed with tweezers or special tick hooks, pulling gently upwards away from the skin.The HPA advice on minimising the risk of being bitten by an infected tick is to:* wear appropriate clothing in tick-infested areas (a long sleeved shirt and long trousers tucked into socks). Light coloured fabrics are useful, as it is easier to see ticks against a light background * consider using insect repellents, e.g. DEET-containing preparations * inspect skin frequently and remove any attached ticks * at the end of the day, check again thoroughly for ticks, especially in skin folds * make sure that children’s head and neck areas, including scalps, are properly checked * check that ticks are not brought home on clothes * check that pets do not bring ticks into the home on their fur.
Further information and guidance is available on the HPS factsheet What do I need to know about ticks and tick borne diseases? at http://www.documents.hps.scot.nhs.uk/giz/general/tick-factsheet-2009-04.pdf.References1. HPA Press Release. Be tick aware when visiting the great outdoors. 2010. Available from: http://www.hpa.org.uk/NewsCentre/NationalPressReleases/2010PressReleases/2. Milner RM, Mavin S, Ho-Yen DO. Lyme borreliosis in Scotland during two peak periods. J R Coll Physicians Edinb 2009; 39:196–9. Available from: http://www.rcpe.ac.uk/journal/issue/39-3.php.3. Milner RM, Mavin S, Ho-Yen DO. Lyme borreliosis in Scotland is different. J Infect 2009; 59:146-7.4. Mavin S, Hopkins PC, MacLennan A, Joss AWL, Ho-Yen DO. The urban and rural risks of Lyme disease in the Scottish Highlands. SMJ 2009; 54(2):24-6. Available from: http://www.smj.org.uk/0509/0509%20index.htm. Websites* http://www.documents.hps.scot.nhs.uk/ewr/pdf2010/1022.pdf
----------------------------------------------------------------------
Adding the above information to HPA websites is not my idea of raising awareness what is going to be done to alert those of us who live and spend time in the countryside?

Farming Today BBC program listen to podcast here

listen to the above podcast for Farming Today 11.08.10 at about 4.26
Only available for another 6 days.

Interview with Prof John Fazakerley about the £2.5 million research money for tick borne illnesses.
During the above podcast the figures of positively tested

Lyme Disease cases in Scotland for 2009 were quoted as 600.

An enormous rise from the 37 cases in 2000.

Dr Ho Yen of HPA in Scotland and CDC say that the resal figure for Lyme Disease is probably about 10 x that of the serologically positive tested cases.

lets do some sums
867 +600= 1467 x 10=14670

Now many on Eurolyme have been chronically ill years before diagnosis some 20-30 years and also years to recover in my case a total of 7 so lets be conservative and say a mean of 5 years.

14670 x 5 = 73350

We could be talking of about

Seventy three thousand yes 73000 people in the UK suffering with Lyme Disease

many will be undiagnosed or mis diagnosed with Arthritis, Fibromyalgia, ME/CFS, Polymyalgia Rheumatica some in my locality were diagnosed with depression another psychosis and the latest case had been diagnosed with Parkinson's others I am in touch with, have been diagnosed with Multiple Sclerosis and one motor Neurons.

Apart from the cost to these individuals of loss of health, many will be unable to work full time and thus claiming benefits.


The burden on the tax payer in itself should make our government sit down and think about this problem.

EDINBURGH TACKING TICKS- £2.5 MILLION FUNDING FROM WELLCOME TRUST

BBC NEWS EDINBURGH

£2.5m for Edinburgh University to tackle ticks.

Ticks can transmit number of severe and potentially deadly diseases to humans including Lyme disease Scientists at Edinburgh University have been awarded £2.5m to tackle the growing health risk posed by ticks.

Campers and hikers have long known the misery ticks can cause.

Now scientists at the Roslin Institute aim to find new ways to prevent diseases transmitted by the tiny insect-like creatures.

The university will establish the Roslin Wellcome Trust Tick Cell Biobank with the funding from the Wellcome Trust.

It says the biobank will house the world's largest collection of tick cell lines, enabling scientists to carry out advanced research.

The scientists hope to understand how viruses and bacteria, which are transmitted by ticks and which cause a range of human diseases, can survive for long periods of time within ticks without damaging them.

In parts of the world, ticks can transmit a number of severe and potentially deadly diseases to humans and animals, including Lyme disease, tick-borne encephalitis and Crimean-Congo haemorrhagic fever. In Britain, cases of Lyme disease are dramatically increasing each year.

In the rest of Europe, tick-borne encephalitis is now endemic in 27 countries, including Germany and Croatia.

Tick numbers are surging in Europe and scientists warn that changing climate patterns and increasing globalisation could enable them to spread into new areas.

The Tick Cell Biobank team and collaborators from seven other European countries have received further funding from the European Union to train a new generation of scientists specialising in ticks and their related diseases.

Project leader Professor John Fazakerley said: "Tick-transmitted infections are likely to be increasingly important in the future. Understanding these diseases and training scientists to undertake research on them is important for both human and animal heath". http://www.bbc.co.uk/news/uk-scotland-edinburgh-east-fife-10914730

Excellent news, once again one has to ask why there are those that dismiss Lyme Disease as rare and easy to cure and then there are the over 19000 research articles written about it and then now this £2.5 million for research on Tickborne illness. I do hope those researchers are fully aware of the enormity of their task not just an interesting experiment on ticks but major World Health consequences can benefit from their research as Eva Sapi is finding from her own similar research.

In the UK alone I am in touch through Eurolyme with 2300 patients (mostly from the UK). We have all struggled to get diagnosis and struggled to get appropriate treatment that can help us. All have been diagnosed with many things as their multiple symptoms progress such as ME/CFS, Fibromyalgia, Arthritis, Muscle Weakness, facial palsies, Multiple Sclerosis and other Neurological illnesses.

I have posted before on Eva Sapi's work and entering her name in the search box on the right hand side will bring up my earlier posts, or click here

INFECTION=CHRONIC DISEASE?

Emerging Infectious Determinants of Chronic Diseases


Evidence now confirms that noncommunicable chronic diseases can stem from infectious agents. Furthermore, at least 13 of 39 recently described infectious agents induce chronic syndromes. Identifying the relationships can affect health across populations, creating opportunities to reduce the impact of chronic disease by preventing or treating infection. As the concept is progressively accepted, advances in laboratory technology and epidemiology facilitate the detection of noncultivable, novel, and even recognized microbial origins. A spectrum of diverse pathogens and chronic syndromes emerges, with a range of pathways from exposure to chronic illness or disability. Complex systems of changing human behavioral traits superimposed on human, microbial, and environmental factors often determine risk for exposure and chronic outcome. Yet the strength of causal evidence varies widely, and detecting a microbe does not prove causality. Nevertheless, infectious agents likely determine more cancers, immune-mediated syndromes, neurodevelopmental disorders, and other chronic conditions than currently appreciated.
Infectious agents have emerged as notable determinants, not just complications, of chronic diseases. Not infrequently, infection may simply represent the first misstep along a continuum from health to long-term illness and disability. Preventing or treating infection or the immune response to infection offers a chance to disrupt the continuum, avoiding or minimizing a chronic outcome. To capitalize on these opportunities, clinicians, public health practitioners, and policymakers must recognize that many chronic diseases may indeed have infectious origins.



http://www.cdc.gov/ncidod/eid/vol12no07/06-0037.htm

The above research is of interest to those of us who have had or currently suffer with chronic illness. In my case Arthritis, muscle weakness and Peripheral Neuropathies all improved since being diagnosed with Lyme disease and treated on long term antibiotics. Many patients suffer from Psychosis, brain fog, gastric problems and neurological problems and then find that Lyme disease was the cause.

Diagnosis can be made for Multiple Sclerosis, Parkinson's, Alzheimer's, Motor Neurons , Autism spectrum disorders or like me Fibromyalgia, ME/CFS, Polymyalgia Rheumatica, Musculo skeletal disease. How many patients with these diagnosis are ever properly checked for Lyme Disease or other infections but instead given sympomatic treatments rather than investigating the cause?

SHAME ON OUR HEALTH CARE FOR IGNORING RESEARCH

I posted earlier Dr Bransfield's response to the IDSA decision over their review of the IDSA Lyme Disease Guidelines. click here

Presentations to IDSA review can be found on www.ilads.org

Stephen Phillips presented 25 studies of seronegativity and persistent infection, Phillips highlights on 18 occasions where IDSA 2006 authors were actually involved in that research confirming seronegativity and persistent infection yet failed to include it in their Guidelines. At the end of the presentations to review panel the chairwoman asked Steere to comment, what was his answer OPINION, Opinion is what is driving these guidelines and leaving thousands of patients the world over without diagnosis and treatment that can help.

How many people suffer from Arthritis, Muscle weakness, Neurological problems, fatigue, Psychosis, digestive problems, brain fog, cognitive difficulties and get diagnosed with ME/CFS, Fibromyalgia, arthritis, MS, MN, Parkinson's, ADHD, OCD without their doctors considering if it could be Lyme Disease.

Ticktalk Ireland has just posted a very useful link to a pdf on her blog that presents many studies on seronegativity and persistent infection, it highlights where the IDSA guideline authors were themselves involved in that research yet failed to include in their guidelines. click here

Whilst our health authorities cherry pick science to support their opinions patients suffer.

TWO HIDDEN EPIDEMICS

Many of you with ME/CFS and/or Lyme Disease will be following the duplicity which is unfolding since the discovery of XMRV and where better to hear what is going on than Hillary Johnson's blog Osler's web.

One of her latest posts a must read here

One of our Lyme Warriors Virginia Sherr MD had this to say to Hillary.

Dear Hillary, Your comments comprise a priceless treasure for the thousands of currently suffering CFS people and for those who will be added to their numbers in the future. Thanks for your guts and true grit. I am aware that you have knowledge of the current Lyme Wars, as well. One of many things that both of our groups have in common is that neither the leaders nor rank-and-file patients in either community has truly been allowed to be part of the solution. Instead, those afflicted are, against all human reasoning, offered only derision not compassion. And, patients are expected to remain in and accept as natural, their various states of agony. So familiar is this to what both the newly-named Lyme Complex as well as what CFS patients endure. As is taught in my field {psychiatry), here is what is typical of "psychopathy": perpetrators have a profound lack of compassion for any other’s feelings of misery and a total lack of empathy for their suffering. Yet this is what we see played out on the part of the very portion of the U. S. Government and its cooperating agencies that are sworn to care about the suffering of the citizenry on a public scale. So, added to CFS agony there is that of the hundreds of thousands of tick-bitten folks who have now late-stage Lyme, a Complex of persistent tick-borne infections but whose government’s only response is to continue to hide the epidemic. I wonder if our current President is aware of the magnitude of these larger-than-the-Oil Spill problems. Or is it as was true with our previous president’s personal Lyme infection, have his handlers hidden the epidemic from him too?
- Virginia T. Sherr, MD


Virginia Sherr has written many good articles on Lyme Disease some of which can be accessed here


More news on FDA/NIH STUDY from PNAS here at CFS Central

GENES, MICROBES, ENVIRONMENT -ILLNESS

Psychiatric Times

Below are extracts from an article written by Dr Bransfield the preseident of ILADS. For the full article click here.

Lyme Disease, Comorbid Tick-Borne Diseases, and Neuropsychiatric Disorders
By Robert C. Bransfield, MD 01 December 2007

Many recall the phrase "To know syphilis is to know medicine." Now Lyme disease (Lyme borreliosis), the new "great imitator," is the ultimate challenge to the breadth and depth of our knowledge. In psychiatry, we generally treat mental symptoms or syndromes rather than the underlying cause of a disorder. A greater awareness of immune reactions to infections and other contributors to mental illness enhances our psychiatric capabilities. Lyme disease, like syphilis, is caused by a spirochete with a multitude of possible manifestations and 3 stages: early with dermatological symptoms, disseminated, and late stage.

Unlike Treponema pallidum, the cause of syphilis, the causative agent of Lyme disease, Borrelia burgdorferi, can be much more difficult to eliminate, diagnostic testing is less reliable, and interactive copathogens are major contributors in the pathophysiology. B burgdorferi is highly adaptable with 6 times as many genes as T pallidum and 3 times as many plasmids as any other bacteria that allow rapid genetic adaptations. It is a stealth pathogen that can evade the immune system and pathophysiological mechanisms. Knowingly or not, most psychiatrists have at some point been perplexed by patients with late-stage psychiatric manifestations of Lyme borreliosis. Several factors are associated with the risk of infection as well as the different manifestations of Lyme borreliosis

The following composite case illustrates a number of problems that may make diagnosis and treatment of Lyme borreliosis anything but straightforward. The patient is in good health and enjoys outdoor activities. Often this person has the HLA DR4 genotype. He or she may acquire a small tick bite that goes unnoticed because the subsequent rash may not be of the classic bull's-eye type, may be easily overlooked in dark-skinned individuals, may be misdiagnosed, or may occur only with a second or subsequent infection. There may be flu-like symptoms with migratory musculoskeletal aches and pains. If a diagnosis of Lyme disease is made, the initial course of antibiotic treatment may not have been sufficient to eliminate the infection. (Although standardized by 1 set of guidelines, psychiatrists often see the failures of some of the "standard" treatments.) Low-grade symptoms may remit and periodically relapse over time. An accident, emotional stress, vaccination, or childbirth can trigger an exacerbation of symptoms.

The patient, who did not have psychosomatic symptoms and was not hypochondriacal in the past, now complains of an increasing number of somatic, cognitive, neurological, and psychiatric symptoms. Although Lyme disease may be suspected, the laboratory tests available to most clinicians often lack sensitivity and thus are read as negative for Lyme disease. Fibromyalgia, chronic fatigue syndrome, or multiple sclerosis (MS) may be erroneously diagnosed.

Treatment of some symptoms with corticosteroids may initially provide relief, but a more rapid decline often follows. The patient sees multiple specialists, each of whom restricts the examination to his area of expertise. Nothing is resolved, and the patient is frustrated that his symptoms cannot be explained. In view of the growing list of unexplained symptoms, including psychiatric symptoms, the patient is treated with tranquilizers and antidepressants with some benefit, but gradual decline persists.
The major complaints include fatigue, multiple cognitive impairments, depression, anxiety, irritability, head-aches, and a multitude of other symptoms. When general medical treatment fails, the patient may be referred to a psychiatrist for 3 reasons: the unexplained medical symptoms give the appearance of a psychosomatic or somatoform condition; complex mental symptoms are thought to require psychiatric assessment; and a psychiatrist is thought to be needed to more effectively manage psychiatric treatments.

General theoretical issues

The causes of most psychiatric illnesses are unknown. The catecholamine hypothesis does not adequately explain the cause of abnormal neurotransmitter functioning. Mendel stated that human traits are determined by individual genes that function independently of other genes and environmental influences. Koch believed that many human diseases are caused by microbes that exert their effect independently of other microbes, environmental factors, and genes. The cause of most mental illnesses cannot be explained by neurotransmitters, genes, or infections alone. Instead, as stated by Yolken,
most common human diseases are caused by the interaction of environmental insults and susceptibility genes.Many of the susceptibility genes are diverse determinants of human response to environmental factors, including infections, and prevention or treatment of the infections may result in the effective treatment of complex disorders.


Tick-borne diseases and chronic infectious diseases

B burgdorferi, the principal organism associated with Lyme borreliosis, is one of the most complex bacteria known to man. In addition, a tick bite can presumably transmit more than 1 disease-causing organism. Thus, 2 major clinical hurdles in diagnosis and management are the absence of a clear therapeutic end point in treating Lyme borreliosis and the potential presence of tick-borne coinfections that may complicate the course of the illness. The more common interactive coinfections may be caused by M fermentans, Mycoplasma pneumoniae, B microti, Ba- besia WA-1, Chlamydia pneumoniae, Ehrlichia, Anaplasma, and B henselae, and multiple viruses and fungi. When multiple microbes grow together, they can promote immunosuppressive effects and cause marked symbiotic changes that alter their functioning.

Neuroborreliosis is an infection within the brain; however, infections in the body that do not pass through the blood-brain barrier may also impact the brain indirectly via immune effects. All the clinical manifestations, acute or chronic, of infection with B burgdorferi are characterized by strong inflammation with the production of several proinflammatory and anti-inflammatory cytokineswith an aberrant innate proinflammatory response and inflammatory brain changes. Most of the dysfunction caused by these infections is associated with immune reactions.

All involved with late state Lyme disease agree there is a large amount of inaccurate information on this subject. This disagreement exists at every level – journals, scientific meetings, clinical practice, media outlets,etc. Some of this disagreement can best be viewed as the normal difference of opinion seen when scientists approach a very complex problem from a very different perspective. To fuel the intensity of these disputes, some approach these issues with a significant bias. The full recognition of this illness has implications, which could effect tourism, real estate values, disability, insurance company/managed care liability, workman’s compensation cases, motor vehicle issues, some criminal cases, and political issues. Bias issues can adversely effect patient care, research funding, and medical regulatory issues. Some of those previously impacted by bias now have difficulty approaching this disease with full-unhampered objectivity.

Lyme disease is clearly a very complex disease. When considering a similar spirochete disease, syphilis, it has been said, “To know syphilis is to know medicine.” However, to know Lyme disease is not only to know medicine but also neurology, psychiatry, politics, economics, and law.

Another interesting article by Dr Bransfield here

By entering Bransfield in the search box in the right hand column of this blog you come up with other posts that Dr Bransfield has been mentioned in, alternately click here

BORRELIA LIKES BRAIN TISSUE

This link is to part of an interview with Eva Sapi here



During the interview Eva Sapi talks about the nutritious requirements for Borrelia being quite significant, she says when we culture Borrelia in the lab, we need to use a very rich media.



She says the brain is an organism very juicy, perfect for Borrelia.



Dr Macdonald and Dr Judith Miklossy both found spirochetes in the brain especially on plaques (they also found the DNA for Borrelia in the brain's of patients that had died of Alzheimer's).



Dr Sapi talks about the many different forms of Borrelia at least 6 -7 forms. Spirochetes, cystic form, bio films, granular forms and countless pleomorphic forms.



Dr Sapi's team are looking at what infections ticks can carry and have found that Mycoplasma is carried by 84% of ticks. Treatment for Mycoplasma can be very many months. Another organism found in ticks is Filarial Nematodes.



Enough of my comments do watch the video

LYME DISEASE ACTION ON FACEBOOK

It is good to see Lyme Disease Action spreading awareness of this disease through Facebook.

Below is a copy of their first post on Facebook but there are many more to read at http://www.facebook.com/home.php?#!/pages/Lyme-Disease-Action/122058224483868

Lyme Disease Action You thought the IDSA guidelines were unequivocally upheld? What no-one is telling you: LDA has issued a press release highlighting what the IDSA Review Panel actually said and how they recommended changes to the guidelines.
Lyme disease review panel : the truth is in the detail
www.lymediseaseaction.org.uk
The Lyme disease review panel of the Infectious Diseases Society of America (IDSA) has released its long-awaited final report following an enforced review of the controversial 2006 Lyme disease guidelines, which are also used in the UK.

If you have like me Fibromyalgia, ME/CFS, Arthritis, Muscle weakness, Musculo Skeletal Disease, Polymyalgia Rheumatica diagnosis then do follow the above links and have a good read because who knows doctors could be missing other cases of undiagnosed Lyme Disease as they did with me for 4 years. Now diagnosed with Lyme disease and after many months of long term antibiotics I am nearly 100% with no pain, no disability, no Arthritis or Muscle Weakness and able to enjoy my garden again.

Lyme Disease can present as Neurological symptoms and be mis diagnosed as MS, MN, Parkinson's, Autism, ADHD, OCD.

It can also cause problems with the heart and the brain and any organ or system in the body depending where the infection goes.

WHAT MOST DOCTORS WON'T KNOW

Listen to internet radio with Gab With the Gurus on Blog Talk Radio

Top experts in the field of Lyme on Gab with the Gurus a must to listen too.

Anyone who suffers with symptoms like mine Arthritis, whether it be Rheumatoid or especially if it is Juvenile Rheumatoid Arthritis, Muscle Weakness or even Neurological problems or Psychiatric problems, or if like me you have been diagnsoed with Fibromyalgia, ME/CFS, Arthritis, Muscle weakness, musculoskeletal disease, Polymyalgia Rheumatica, in fact anyone visiting my blog would do well to listen to this recording, one thing very clear is that the science is not all known about Lyme Disease or other tick borne illnesses.

What the Gurus are saying is that if doctors don't know what is causing your many symptoms and you suspect a tick bite then keep looking until you can find a doctor to help you. So don't stay sick but do something about it and ask the doctor how many cases he has treated of Lyme Disease and how much time he is prepared to spend on considering this diagnosis. This would be a good indication on the competance of this doctor in dealing with Lyme Disease whilst there is so much controversy and two standards of care in treating patients.

Lyme Disease: The Dangerous, Tick-Transmitted Disease -- What it Is & How to Avoid It with Top Gurus

2/06/2010 19:00 - Length:1 hr 30 min

Learn about Lyme disease, the fastest-growing infectious disease, which is transmitted by infected ticks. This show will also help you learn how to identify if you have the disease and how to get treated. We'll also discuss why the medical community is so flummoxed by their patients' ailments.

My guests include Pamela Weintraub, author of "Cure Unknown: Inside the Lyme Disease Epidemic"; Dr. Leo J. Shea, III, vice president of the International Lyme and Associated Diseases Society (ILADS) and Clinical Assistant Professor of Rehabilitation Medicine at Rusk Institute, a division of the New York University Langone Medical Center; Phyllis Mervine, founder of the California Lyme Disease Association (CALDA); and Connie Strasheim, a health Care Journalist and author of two books about Lyme disease, including her latest, "Insights Into Lyme Disease Treatment." Please read my recent op ed piece on AOL News. Learn more at ==== >> http://tinyurl.com/OverlookedEpidemic-Connie-AOL

http://www.blogtalkradio.com/gabwiththegurus/2010/06/02/lyme-disease-the-tick-transmitted-disease--what-it

Dr Leo J Shea will be presenting his new research on 12 June at the ILADS London Conference. see www.ilads.org for details.

MEDIA AWARENESS

http://www.edmontonjournal.com/Lyme+disease+tricky+diagnose/3064838/story.html

Lyme disease tricky to diagnose

Number of cases may be under-reported because blood-testing not always foolproof

By Florence Loyie, Edmonton Journal May 23, 2010 10:00 PM

The number of Albertans with Lyme disease may be under-reported because the illness is often misdiagnosed, says an Edmonton board member of the Canadian Lyme disease Foundation.
Part of the problem is infectious disease specialists won't treat for suspected Lyme disease unless they have a positive blood test from an approved laboratory, said Janet Sperling, who is also a University of Alberta entomologist, and co-author of a submission to The Canadian Entomologist on the presence of Lyme disease ticks in Alberta.
Sperling said many local cases go undiagnosed partly because she believes local labs give out too many false negatives.
In 2005, her oldest son, Ed, then 15, contracted Lyme disease, likely on a family vacation in California. He was tested for a number of diseases ranging from Parkinson's to epilepsy by local doctors. Three tests done in Alberta for Lyme disease came back negative.
When Sperling and her husband sent Ed's blood to a California lab, it came back positive for Lyme disease. But local doctors remained skeptical even though Ed's condition continued to deteriorate, she said.
It was not until late 2005 that a doctor reluctantly put Ed on three months of intravenous antibiotics, followed by six months of oral medication. Ed has since made a full recovery.
Between 1992 and 2006, 19 cases of Lyme disease were reported in Albertans, all who had travelled to eastern Europe or the east coasts of Canada and the United States, where ticks carrying the bacteria are common.
Sperling said her son is not listed among the Alberta statistics even though the California lab gave him a positive result and the antibiotic regime cured him. That's because the provincial health office insists a blood test to come back from the laboratory with five positive indicators to define Lyme disease. The European standard requires three.
The disease is rarely fatal in humans but can cause fatigue, fevers, headaches, severe arthritis, abnormal heart beats and other symptoms if left untreated with antibiotics.
The first sign is often a circular rash, called a bull's-eye rash, where the tick has bitten and burrowed. The ticks start out the size of a freckle, but can balloon up to the size of a grape after a bloody meal.
In 2007, provincial health officials confirmed the western blacklegged arachnid had been found in Alberta. Unlike Alberta's moose tick and other local varieties, the western blacklegged arachnid is known to carry the bacteria that causes Lyme disease.
Last week, Alberta's chief veterinarian, Dr. Gerald Hauer, said he was informed that three ticks found by a provincial surveillance project were positive for the bacteria. One tick was found in the Ardrossan area, just east of Edmonton. The other two were found near Calgary and High River. All were collected in the last three weeks. They were tested at the Public Health Agency of Canada's Winnipeg lab.
Sperling said she disagrees with the government's finding that Alberta's first identified Lyme disease carrying tick was found in 2007. "There had been a positive (Lyme disease) tick found in Grande Prairie in 1994," she said, adding she has supporting documentation. Sperling said the foundation has waged an awareness campaign for years to get the message out that you can contract Lyme disease anywhere in Canada, including Alberta. "Alberta has been a particularly tough spot to get the diagnosis for humans," Sperling said. "This is really strange because the vets don't seem to have a problem with saying we recognize we have Lyme disease in Alberta."
Linda Laidlaw's oldest daughter, Xian, contracted Lyme disease as a four-year-old, but was never diagnosed in Canada. "We had to travel to the U.S. for diagnosis and treatment ... and spent over $50,000 to help her recover, none of which has ever been reimbursed," Laidlaw said in an e-mail. "At the height of her illness, I was told that she had an incurable degenerative neurological illness that was likely a rare form of late onset autism or an unknown genetic illness and that there was nothing more her doctors could do.
"By then she'd been ill for about six months. She had lost her ability to communicate and her cognitive skills as well as suffering from myriad physical problems," she said.
Her daughter spent a month in the Stollery Children's Hospital being tested, although never for Lyme disease, and was seen by over 20 pediatric specialists. She also spent three weeks as an in-patient in the Royal Alexandra's secured child psychiatric unit.
Laidlaw said she was sitting in the hospital reading The Journal when she read a story about Ed Sperling and decided to contact the family.
Once Xian began receiving antibiotic treatment for Lyme disease and tick-borne co-infections, her daughter began to get better and continues to improve daily. Xian is now six years old. "If only one of the many doctors who had seen her had known to diagnose Lyme or even just suggested it to me as a possibility, my daughter and our family would have been spared from the ensuing years of pain and difficulty, from which we are still trying to recover," she said.
Laidlaw said she is not sure where Xian contracted the disease but it was either in Alberta or British Columbia because she has never travelled to any U.S. areas where the ticks are found. "The irony of this story is if I had a dog with Lyme disease, I would be more likely to get treatment for it in Alberta than for my child," Laidlaw said.
Sperling said the foundation's goal is to convince the infectious disease medical community that even if a blood test comes back negative for Lyme disease, the patient should begin an antibiotic regime based on their symptoms and history.
Dr. Gerald Evans, president of the Association of Medical Microbiology and Infectious Disease Canada, said in a November 2009 news release that the organization's doctors are at the forefront of antibiotic resistance issues and are confronting the overuse and misuse of antibiotics.
"We must consider the potential serious side-effects of inappropriate antibiotic use for unproven (Lyme disease) including: Clostridiumdifficile-associated disease, life-threatening drug interactions and antibiotic resistance," Evans said in the statement, released in response to a CTV W5 investigation into diagnosis of Lyme disease in Canada.
Evans added that in 2005, the U.S. Centres for Disease Control and Prevention questioned the validity of some American laboratory tests for Lyme disease that use a diffe-ent standard for interpretation. The tests costs hundreds of dollars and are billed directly to the patient.
"This is cause for skepticism," Evans said. "Furthermore, some American doctors who claim to be (Lyme disease) specialists do so without any requirement or regulatory authority to verify their credentials or any established standards for claiming such a title."
Dr. Andre Corriveau, Alberta's chief medical officer of health, said last week he was alerting the medical officers of health throughout the province of the three ticks recently found. Corriveau said anyone spending time outdoors should wear insect repellent, long pants and enclosed shoes when walking in tall grass, woods or bush.

It is time there was more awareness in our National Press here in the UK too.

An earlier post click here
gives a link into a W5 program

Also an earlier post Research by the Sperlings click here


http://pubservices.nrc-cnrc.ca/rp-ps/inDetail.jsp?jcode=ent&vol=141&is=6&lang=eng

Abstract: Lyme borreliosis (LB), also known as Lyme disease, is emerging as a serious tickborne illness across Canada. More than three decades of research on LB in North America and Europe have provided a large, complex body of research involving well-documented difficulties at several levels. However, entomologists are well situated to contribute to resolving some of these challenges. The central pathogen in LB, the spirochete Borrelia burgdorferi Johnson et al., includes numerous genospecies and strains that are associated with different disease symptoms and distributions. The primary vectors of LB are ticks of various Ixodes Latreille species (Acari: Ixodida: Ixodidae), but questions linger concerning the status of a number of other arthropods that may be infected with B. burgdorferi but do not transmit it biologically. A variety of vertebrates may serve as reservoirs for LB, but differences in their ability to transmit LB are not well understood at the community level. Persistent cystic forms of and immune system evasion by B. burgdorferi contribute to extraordinary challenges in diagnosing LB. Multiple trade-offs constrain the effectiveness of assays like ELISA, Western blot, polymerase chain reaction, and microscopic visualization of the spirochetes. Consequently, opportunities abound for entomologists to contribute to documenting the diversity of the players and their interactions in this devilishly complex disease.

AWARENESS CHILDREN MIS DIAGNOSED

What I find most troubling about the denial over Lyme Disease is that children are failing to be treated for tick bites, bulls eye rashes and allowed to develop chronic ill health. Worst still our specialist doctors are not picking up on the Lyme Disease because of the problems over denial.



In the UK I have been in touch with several parents of young children whose children have fallen between the cracks.



I visited one whose daughter had such terrible head pain that it caused her to scream I was there during one of her episodes which was truly heartbreaking to hear. She had had three major operations on her head including one at the base of her brain in order to control these symptoms and had been ill since she was 15 . Now 10 years later she still suffers and has other symptoms of Lyme including Arthritis.



Her Neuro consultant said we would look a bunch of charlies if it turned out to be Lyme disease.



Well it did and yet even so the denial is still causing problems over treatment.



The saddest case is that of Lewis Jeynes a perfectly normal happy little boy at 2 who was bitten in France whilst holidaying there. Gradually his health deteriorated so that he can no longer use his arms, legs, is tube fed and has seizures. Diagnosed with Lyme Disease and some improvements on antibiotics but still his NHS doctors are in denial. I do hope they can get some specialist attention soon.



One mother had been told there was nothing wrong ( the tests showed this)and if she persisted with her enquiries privately they would be looking at MBP.



Specialist Lyme Doctors are finding in children symptoms can present as Obsessive Compulsive Disorder, Attention-deficit Hyperactivity Disorder or Autism.



Others parents have taken their children to the USA to see the only paediatric doctors available who know enough about Lyme Disease.



It is not safe for them to talk openly about their case because of the very real threat of MBP so I will post something I found on Google Alerts today which so highlights what many parents are experiencing.



What of the children that never get diagnosed ?



http://www.the-daily-record.com/news/article/4829726



Sentimental Journey Sophie's suffering



about 24 hours ago
The daylight was fading from the late winter sky when the phone began ringing.
"Can you talk to a woman from New York who needs help?" my dear friend, Marjorie began. "You see, my sister is the family nurse. Their little girl is very sick with Lyme disease."
How well I knew that scenario.


A few minutes later, I was on the phone with Mindy, a mother I'd never met, whose child, Sophie, was crying desperately in the background. That's when Mindy began telling me her story.


The first tick bite seemed unimportant back in 2008. A second tick found in Sophie's scalp a few months later was not unusual either. Their family physician checked the child and said not to worry. After all, the eastern seaboard is well-known for its tick population. Sophie seemed OK after the two occurrences. Sure there was a rash, but she seemed fine. Until months later when Sophie began having headaches that left her doubled over. Until she was suddenly unable to walk. What happened to their once-healthy child?


Mindy began seeking help immediately, traveling from doctor to doctor. I was not surprised that even in New York state, where Lyme disease and other tick-borne illnesses are more easily recognized, little connection was made between the neurological symptoms Sophie was experiencing and the reported tick bites. One doctor ran Lyme tests when every other test came back negative. The preliminary Elisa test came back only mildly positive. The Western Blot came back inconclusive. But by then, little Sophie was neurologically impaired. She was admitted to a psych unit when the headaches left her screaming, when she could no longer use her legs.
I was called to comfort Mindy, because only a mother knows another mother's pain.


By the time we spoke, Mindy had done her homework. A medical follow-up with an ILADS physician had been scheduled. An antibiotic had been started.


"What can I do to help Sophie?" Mindy inquired, her voice breaking.
"Follow your instincts," I began. "Your child is gravely ill. Don't stop till you have answers. And always pray to God for guidance. He will be there when everyone else walks away." I could hear Mindy crying. Her daughter had finally settled. I wiped away a tear, remembering.


Mindy and I established a routine in the next few months, on the phone and then via e-mail. We told each other our stories. The Lyme-literate doctor she consulted confirmed the tick-borne illness. After all the doctors they saw, even several neurologists, one finally listened. One properly diagnosed the child. With the strange symptoms accompanying the disease, no two cases are ever the same.


Mindy told me about the day Sophie was infected several years ago. How her hairdresser found the first tick. Her husband found the second. I thought about how that insidious, invisible pathogen slowly but surely integrated itself in Sophie's small body, how as the bacterium multiplied, the subtle symptoms were dismissed until the neurological damage could no longer be ignored.


The last time Mindy wrote, Sophie had taken a few tentative steps in physical therapy. The headaches were finally abating. The treatment: a long-term antibiotic regimen.


"Sophie laughed today," Mindy told me in that last e-mail.


I knew exactly what Mindy was thinking. Sophie's laughter, a sound she once took for granted, had become the most precious sound in the world.


Remember, May is Lyme Awareness month in Ohio. This disease has grown to epidemic proportions. Most patients don't remember seeing a tick bite or rash. But if you fear infection, contact an ILADS physician for treatment today.