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.

THE TORTURES OF THE DAMNED - AUTISM

The tortures of the damned

Blog The Age of Autism just published an excellent article that should be read by every parent or parent to be infact by everyone as we all have a responsibility to learn what is going on.

The simple idea -- on September 18, 2010, Joan Campbell posted the following note to parents of autistic children: "I am compiling a list of children who were adversely affected by any vaccine. Please if you could say in about 4-6 sentences what that vaccine was, how they reacted, how they are today and what city the vaccine was administered."
To date, more than 900 responses have been received. The cumulative effect is simply devastating.
Over the past few months, as we all know, the medical establishment and the mainstream media have taken to calling the concern that vaccines can and do cause autism "discredited" -- a "myth" based on fraudulent science, Internet rumors, hysterical parents looking for something, anything -- someone, anyone -- to blame. These reports tell a very different story -- children vaccinated in good faith, on time and in full by caring parents who then watch, often within hours, the physical and mental collapse of their beloved baby.
in this case, the plural of anecdote is the truth. The truth that we're talking about is much more than autism here -- everything from sudden death to seizures, acute allergies to horrible gut problems, arthritis to ADD.

Now click here to read on and also here to read the growing list of parents experiences of their children following vaccination.

What has this to do with Lyme disease you may well ask or even ME/CFS well if you have followed this blog you will see from earlier posts that some children with Autism also suffer with Lyme disease and can improve on appropriate treatments and there are posts about parents with ME/CFS whose children suffer from Autism. Using the search box on the right you will find earlier posts related to Autism.

Please share this.

LYME DISEASE AND MENTAL HEALTH

Borreliosis (Lyme Disease) and its known involvement in Mental Health
by Denise Longman

Borreliosis (Lyme Disease) and its known involvement in Mental Health

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 horse flies and cleggs and also in mosquitos 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 Ziekenhuis at 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 disorders and 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 councillors 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 nearly 2 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.
J Neuropsychiatry 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.
van den 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.
Psychosomatics 1995; 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.
Med Hypotheses 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.

AUTISM SPECTRUM AND INFECTION

Dr. Jones speaks on the Lyme Autism Connection at the recent LIA (Lyme Induced Autism) Foundation conference in April, 2008. Full DVD set is available from http://www.lymebook.com/autism

I have previously posted about Dr Jones further links found here here here or by putting Dr Jones in the search in my right hand column

Also other interesting videos from Dr Bhakta can be seen here

Dr Bransfield published about The association between tick-borne infections, Lyme borreliosis and autism spectrum disorders here

'Chronic infectious diseases, including tick-borne infections such as Borrelia burgdorferi may have direct effects, promote other infections and create a weakened, sensitized and immunologically vulnerable state during fetal development and infancy leading to increased vulnerability for developing autism spectrum disorders.

A dysfunctional synergism with other predisposing and contributing factors may contribute to autism spectrum disorders by provoking innate and adaptive immune reactions to cause and perpetuate effects in susceptible individuals that result in inflammation, molecular mimicry, kynurenine pathway changes, increased quinolinic acid and decreased serotonin, oxidative stress, mitochondrial dysfunction and excitotoxicity that impair the development of the amygdala and other neural structures and neural networks resulting in a partial Klüver-Bucy Syndrome and other deficits resulting in autism spectrum disorders and/or exacerbating autism spectrum disorders from other causes throughout life.

Support for this hypothesis includes multiple cases of mothers with Lyme disease and children with autism spectrum disorders; fetal neurological abnormalities associated with tick-borne diseases; similarities between tick-borne diseases and autism spectrum disorder regarding symptoms, pathophysiology, immune reactivity, temporal lobe pathology, and brain imaging data; positive reactivity in several studies with autistic spectrum disorder patients for Borrelia burgdorferi (22%, 26% and 20-30%) and 58% for mycoplasma; similar geographic distribution and improvement in autistic symptoms from antibiotic treatment.

It is imperative to research these and all possible causes of autism spectrum disorders in order to prevent every preventable case and treat every treatable case until this disease has been eliminated from humanity.'

INFECTIVE CAUSE OF NEUROLOGICAL ILLNESS

Multiple Sclerosis, Parkinson's, Motor Neurons, Alzheimer's, Peripheral Neuropathies, twitching, tingling and other Neurological illnesses have all been diagnosed in patients with Borreliosis commonly referred to as Lyme Disease.

Sadly with the controversy which has developed over the last 30 years not all the important information is easily available to our doctors and consultants, so it is necessary to get well informed so that you can best advocate for what is right for you.

It is significant that those doctors and consultants are the first in line consulting the specialist Lyme Doctors following ILADS when they or their family member is thought to have a Borrelia infection, Lyme Disease and the many co infections that often accompany this chronic infection.

“Lyme on the Brain”
Lecture notes Part 2 of 4
by Tom Grier
Microbiologist
August 2010

The heart and soul of the mechanism of infection, or the pathogenesis of Borrelia bacteria that cause Relapsing Fever and Lyme disease is its ability to attach to the lining of blood vessels and cause gaps or holes to appear between the endothelial cells.

The endothelial cells themselves release digestive substances, as well as our own white blood cells releasing blood-born immune factors such as tissue plasminogen, TNF-alpha, IL-1, Il-6, histamines, vaso-active amines and MMP-9 that facilitates cell penetration through any and all blood vessels, but especially important is the immediate transit of Borrelia burgdorferi through the blood-brain-barrier.

Animal models including dogs and primates show conclusively that this is not just a random occurrence, but rather a very specific mechanism that facilitates both the immediate and long-term survival of Borrelia within mammalian systems.

In dog-models, the uninfected dog’s blood protein albumin was tagged with radioactive Iodine, and then traced using radio-detection of entering the brain and spinal-fluid.

After infected ticks were allowed to feed on the dogs, this “leaky-brain-effect” took less than 24-48 hours to reach its full potential.

We can measure and observe this leaky-brain-effect in dogs, hamsters, rabbits, and primates within hours, and we can see and detect in many other animal models including guinea pigs, mice, hamsters, and rabbits the actual transit of Borrelia into the brain of these animals within days of tick-bite, yet our own USA health-care experts are saying without equivocation that infected ticks have to be attached for at least 36-48 hours.

(YALE Medical Report, IDSA-Lyme Treatment Guidelines)

Why is there such an absolute dictatorship in our guidelines when we have direct animal studies since 1989 that suggest that not only does Borrelia bacteria penetrate blood vessels and enter the brain, but once the blood-brain-barrier closes up 10-14 days after initial infection; the sequester bacterial infection within the brain is undetectable by serology tests.

Our current serology tests that detect antibodies to the Lyme bacteria; require at least 4-6 weeks after exposure to produce significant antibodies to the Lyme bacterium.

By then the infection can be resting dormant and quiescently within the host’s brain, undetected, undetectable, and creating changes within the brain that are subtle and perhaps for awhile negligible.

*******************************************
Consider these other short-comings of the
Current antibody based Lyme serology tests:

1. To create these tests we need a representative source of the wild bacteria as a source for specific antigens that can be used to detect the specific antibodies that patients produce as a result of an infection from their local area.

Since Borrelia bacteria are genetically equipped to change their antigenic appearance (strain variation) it is important to use tests that are designed using the best representation of the bacteria that is found in the local area.

There can be tremendous variation in Borrelia isolates even those found within close proximity to each other.

There are well over 1000 Borrelia isolates of Borrelia burgdorferi that are strain variations in the USA alone.

This is not even counting the greater variation that we see if we look at other related geno-species; such as,

Borrelia lonestarri in Missouri, or Relapsing Fever Borrelia in the SW USA,
or the genospecies Borrelia garinii and Borrelia afzelii found in Europe,
or the dozens of other related bacteria in the world that cause Lyme-like or Relapsing-Fever-Like diseases caused by various variant strains of Borrelia bacteria.

Once you see this global picture you can never look at Lyme as an isolated disease ever again. It is part of a global-pandemic called Borreliosis.

But the tests that have been chosen for us, and dictated that we use are not based on any Borrelia found in nature! Why?

Since Borrelia identity changes quickly by inserting variant plasmid genes into its larger linear chromosome, the bacteria will always have built in variation unless you eliminate plasmids.

(Borrelia burgdorferi has about 31 circular or linear plasmid-chromosomes that facilitate genetic variation,
it is estimated that over 60 genes can insert in at least three different chromosome loci resulting in over sixty to the 3rd power variations in the bacteria
or potentially over 200,000 possible variations that could be predicted based on what we currently know.)

This creates an economic and practical dilemma for manufactures of Lyme serology tests who want consistency and reproducibility without the expense of isolating local bacteria from local ticks and growing them in the lab which is very difficult, time consuming, inconsistent and expensive.

For this reason manufacturers use a strain that was developed in a lab that resists variation.

Strain B-31 that was originally isolated from the NE USA ticks, and was created through high-passage selection until it remained consistent from division to division.

B-31 is never found in nature,

and when B-31 tests were compared and tested by independent researchers in Madison WI, France, Austria, and United Kingdom, B-31 had short comings and never had the essential antibody detection that the tests developed from local wild-strains produced.

One can make an argument for B-31 consistency, but never for its local strain selectivity.

What makes this discussion about what strain we use to make Lyme serology tests completely moot; is the one fact that we completely ignore in the United States:

Once Borrelia bacteria breach the brain’s defenses, absolutely no Lyme serology test short of an autopsy can rule out infection within the human brain!

Here are some other considerations about Lyme test shortcomings:

2. Dr. Lori Bakken, Madison WI tested 516 labs across the USA using Lyme ELISA tests, and found them seriously lacking and only about 50 % accurate in consistency of positive tests.

3. She used triple paired identical blinded samples.

4. This independent test illustrates the fallibility of the Lyme ELISA test yet incredibly the ELISA is demanded by so called experts and medical authorities to be used as one of two screening tests used for the diagnosis of Lyme disease.

(Bakken LL, Callister SM, Wand PJ, Schell RF. Interlaboratory Comparison of Test Results for the Detection of Lyme Disease by 516 Participants in the Wisconsin State Lab of Hygiene/College of American Pathologists Proficiency Testing Progrm. J Clin Microbiol 1997; Vol 35, No 3:537-543
Bakken LL, Case KL, Callister SM et al. Performance of 45 Laboratories participating in a proficiency testing program for Lyme disease serology. JAMA 1992;268:891-895

Now consider the second screening test:

The Western Blot was once a useful tool for diagnosing Lyme disease when used properly, but the National Western Blot Criteria meeting held in Dearborn MI changed this test from somewhat useful to useless and the logic and science behind it is so poor we have to ask ourselves what agenda did the committee of state epidemiologists and concerned patent-owners have?

Yes people and institutions who had conflicts of financial interest had input into the two-tiered system of diagnosis that we currently use.

The nearly arbitrary decision to eliminate species specific antibody-bands from the reporting of the Western Blot tests definitely made the Western-Blot test less accurate.

This change in accuracy did not come about from changing the actual test but rather by enforcing a reporting-bureaucracy that made the test less sensitive.

Make no mistake the labs that do this test still see the positive bands that are banned from reporting, but are legally unable to report them.

Then to further cloud the already muddy waters of accuracy it was decided that all laboratories across the USA have to report all Western Blots as either positive or negative and not report the essential bands.

Not reporting significant Western Blot Band is to a scientist, tantamount to saying: There are no contaminates in your drinking water, so please don’t waste your time testing the well water.
If you do test the waters and find something that we haven’t reported, we have already deemed that the contaminates are unimportant and benign.

Well the contaminates (bands 31, and 34) aren’t as benign as we are told.

Let’s look at the old Western Blot reporting criteria on 66 kids with a tick-bite and bull’s-eye rash compared with the new reporting criteria.

This is the same test and same patients, but we are now using the Dearborn MI “Dressler” criteria for Western Blot reporting.
Western Blot and False Negatives in Children:

1995 Rheumatology Symposia Abstract # 1254 Dr. Paul Fawcett et al.

This abstract showed that under the old criteria, all of 66 pediatric patients with a history of a tick bite and, Bull’s Eye rash who were symptomatic, were accepted as positive under the old Western Blot interpretation.

Under the newly proposed criteria only 20 were now considered positive.

That means 46 children who were all symptomatic, would probably under the previously mention YALE Criteria be denied treatment!

That’s a success rate of only 31%.

66 Children with Bull’s Eye rash Old W. Blot Criteria 100% positive

New NIH Criteria 31% positive

The number of false positives under both criteria was ZERO %.

* Note: A misconception about Western Blots is that they have as many false positives as false negatives. This is not true.
False positives are rare.

The conclusion of the researchers was: “the proposed Western Blot Reporting Criteria are grossly inadequate, because it excluded 69% of the infected children.”

More issues with serology testing in Lyme:

3. The human body starts to make IgM antibody at 4-6 weeks after exposure to the pathogen, and does not make IgG antibodies for many months, yet some “Lyme Experts” want to eliminate IgM Western Blot reporting completely.

4. This would almost certainly mean less early Lyme disease detection because most doctors who use “Two-Tiered” testing protocols will test within the first two months of tick bite and the negative Western Blots will demand that they not treat. (See Yale treatment protocols above)

D) The Lyme bacteria can hide almost immediately within the human body.

Without a large enough number of bacteria (infection load) that remains in the bloodstream for a sufficient time for the immune system to recognize the pathogen, the human immune response will be minimal or absent.

Intracellular localization of Borrelia burgdorferi within human endothelial cells. Ma Y, Sturrock A, Weis JJ. Infect Immun 1991 Feb; 59(2): 671-8. PMID:

Characterization of Borrelia burgdorferi invasion of cultured endothelial cells. Comstock LE, Thomas DD. Microb Pathog 1991 Feb; 10(2): 137-48. PMID:

Penetration of endothelial cell monolayers by Borrelia burgdorferi.
Comstock LE, Thomas DD. Infect Immun 1989 May; 57(5): 1626-8. PMID:

Although the antibody tests would be negative possibly for years, the infection can still be alive and cause problems where it survives such as in the:

joints, heart, inside endothelial cells, and inside the brain and more specifically inside brain neurons and glial cells.

These bacteria cannot be detected with indirect methods like Lyme antibody test including ELISA and Western Blots, nor is it likely that DNA-PCR can detect these infections without heroic efforts to obtain proper sampling that goes far beyond just blood and urine.

Time, money and expediency have forced doctors to use tests that are inadequate for the task of determining the worst possible scenario which is a persistent infection within the brain.

For the simple reason that most patients are not obviously or immediately affected by their neurological infection, the medical system has ignored these ticking time-bomb patients that are seronegative, and symptom free.

But the neuro-lyme patients will pay a severe price for having doctors who refuse to go back and connect all the dots after these patients reappear in their offices with severe disabling symptoms.

Untreated and improperly treated tick bites can lead to patient disasters. Yet the treatment guidelines are so black and white that we have to now ask ourselves:

Are we going to hold the users of these treatment guidelines accountable for their lack of any flexibility?

Patients are not paid to be experts in any disease, but when an entire medical community has limited all the options for sick patients both in diagnosis and treatment, then can we not hold these professionals to the same standards we would expect from a plumber?

If the pipes leak, at least try and understand why?

Here is an example of unrealistic expectations from the medical community.

In Valhalla, New York a temporary Lyme treatment center was created that used the ELISA test to screen patients.

Using this inadequate test it was determined that about 30 % of all walk in patients had Lyme disease.

But here is what one of the coordinators had to say about it:

There is great hysteria about Lyme disease... less than a third of the patients who walked in to our center actually had Lyme disease.

Would we hold the same standards of accurate self-diagnosis to cancer patients, or heart patients?

Do we publicly chastise patients walking into a sexually transmitted disease center and say:

“These people are wasting my time! Only a third of them have VD!!!”

Why then is there a double standard for people who are losing their jobs, their marriages and quality of life who are just seeking answers.

No wonder so many patients turn to alternative treatments. The options for Lyme disease patients to get diagnosed and aggressively treated in America is extremely limited and only getting worse every year!

Now consider this:

Recently a Lyme disease expert stated nationally that there is no evidence of transplacental transfer of active infection from mother to fetus.

We have actually observed in culture Borrelia burgdorferi penetrating umbilical vein.

We also have nine case histories 1987-1989 that confirmed by either culture or direct tissue staining that in fact Borrelia burgdorferi does cross the placenta, and has caused still-births including infections within the fetal brain.

(See work and photo by Dr. Andrew Szycpanski Stony Brook Dept. of Pathology New York of
Borrelia creating holes in umbilical vein.)

If I was a Obstetric Nurse or OB-GYN and told to repeat this factoid that Lyme does not cross the placenta as stated by our guiding experts on Lyme disease concerning pregnant patients, and then to also be forced by clinic administrations, insurance companies and peer pressure to rely on two-tiered testing, and follow published treatment guidelines that ignore our entire encyclopedia of knowledge on spirochetes, I would be worried!

I would be worried that when the next fetal autopsy is done that I would be called to be accountable.

**************************************
This is a silver stained image of a Borrelia burgdorferi penetrating a fetal brain neuron at necropsy of a still-born fetus from a mother thought to be at low risk for Lyme disease and seronegative for Lyme antibodies on several Lyme serology tests. Alan MacDonald
************************************
If Lyme disease patients have early undetectable neurological infections that resist current antibiotic treatment regimens, then why haven’t we seen evidence of this?

First of all if you define treatment success by merely saying that the patient’s Lyme tests are now negative after treatment, you will by virtue of incredibly bad science never see treatment failures.

This is because eliminating the infection from the blood is not the same as eliminating it from the heart, brain and joints.

But serologist will fail to detect these areas of sequester infection where the bacteria fails to stimulate antibody production.

Next you have to look at follow-up.

If you do a study that compares doxycycline to IV ceftriaxone and the only symptom is a bull’s-eye rash and your only determination of cure is the absence of rash and a negative ELISA test, and your only follow-up post treatment is two weeks.

You will probably conclude that doxycycline is as effective as IV ceftriaxone, and insurance companies will smile and love you. (See M. Eckman )

Two things have been consistently true in nearly one dozen antibiotic treatment studies:

The longer you treat the fewer relapses you have, and the sooner you treat after tick bite the better, and the longer you follow patients after treatment the higher the relapse rate will be.

We have patients from Nantucket Island that were followed over five years after months of antibiotic treatment and still relapsed and it didn’t matter if intravenous drugs were used.

What was more important was How long you treated and how soon after tick bite you treated.

Overall the relapse rate after 5 years approached 50 %, but to get all the facts you had to go to a Lyme Conference because this final relapse rate was never published and conveniently left out.

How antibiotics work:

In most cases bacterial lethal exposure occurs only during cell division.

For a spirochete like Borrelia that is a slow divider (24 hours under good conditions) to get the same lethal exposure during cell-wall synthesis as say treating strep bacteria, you would have to treat for one year and five months.

Using the old microbiology formulas for tuberculosis from the 1950s, we would expect both TB and Lyme disease to require in many cases over one year of antibiotics including combination therapy.

Well we learned our lesson with Tuberculosis but not yet with Lyme disease.

Relapse or Failure %

Logigian (1990) 37% After 6 months, 10 of 27 patients treated relapsed or failed treatment.

•17 (63%) improved,
•6 (22 percent) improved, then relapsed,
•4 (15%) had no response.”

Pfister (1991) 37%,
33 patients with neuroborreliosis treated.

After a mean of 8.1 months, 10 of 27 were symptomatic and borrelia persisted in the CSF of one patient:

Asch (1994) 28%, 3.2 years after initial treatment:

28% relapsed with major organ involvement;
18% were reinfected.

Persistent symptoms of arthralgia, arthritis, cardiac or neurologic involvement, were present in 114 (53%) patients.”

Shadick (1994) 26%,
10 of the 38 patients …relapsed within 1 year of treatment and had had repeated antibiotic treatment.”

Shadick (1999) >37%,
69 of 184 previously treated patients (37%) reported a previous relapse.

Treib (1998) >50%,
After 4.2 years, more than ½ of 44 treated patients with clinical signs of neuroborreliosis and specific intrathecal antibody production were symptomatic.

Valesova (1996) 38%, At 36 months, 10 of 26 had relapsed or progressed:

complete response or marked improvement in 19, relapse in 6, and new symptoms in 4.

End of Lecture Notes for Lyme on the Brain Part 2 by Tom Grier

***********************************************************************

The above is posted by permission of Tom Grier the author. Tom requested that I make available the supporting references, these total over 100 pages. I can't seem to add links to this post but should anyone wish these references I will e mail them with attachments so contact me, my e mail can be found in my profile in the right hand column of this blog.

Thanks to Madison Area Lyme Support Group for posting here
and thanks to Betty G for contacting me with details on MD Junction here

ENDING DENIAL

Ending Denial
The Lyme Disease Epidemic
A Canadian Public Health Disaster

A call for action from patients, doctors, researchers and politicians
Edited by Helke Ferrie

Order from Can Lyme details here

I was sent this excellent book by my good friend Alison a fellow Canadian, ex Brit and Lyme sufferer.

It really is the most incredible read and something anyone suffering with Lyme Disease or their carers would find interesting and helpful, whether they lived in or outside Canada and should then be passed on to their doctors.

I have always been a great advocate for Pam Weintraube's book Cure Unknown Inside the Lyme Epidemic and have purchased 4 copies, one for my GP, one for my MP, one to lend to local Lyme patients and one for myself, although that is in the hands of a journalist at present. Pam's book is excellent at helping us understand how medicine and science could have led us into the mess Lyme Disease patients find themselves in. Not just the illness but the denial that makes diagnosis and treatment so elusive.

This new book Ending Denial goes so much further and the title says it all.

The two patient stories one by the Sperling parents on their son's illness and struggles with the health care system and his ultimate recovery from Lyme Disease, followed by that of Linda Laidlaw's daughter's illness and ultimate Lyme Disease diagnosis and recovery, both highlight the journeys so many thousands of patients the World over have. The tragedy especially, when it is our children suffering.

In Linda's circumstances she followed the Sperling son to all the hospitals he had been to and yet they never considered that her daughter could have Lyme Disease, so no lessons learnt there then.

(earlier posts on the Sperling's son and their excellent research can be found by entering Sperling in my search on the right or click here including mention of Linda Laidlaw's daughter here )

Key articles from scientific literature, these detailed research articles on Lyme Disease are fascinating to read and leave the reader in no doubt that the science is there that dismisses the IDSA opinions in their restrictive guidelines and supports the ILADS guidelines.

The Political struggles are like those in USA and many of the European countries. They mirror so much what has been happening here in the UK with many MP's supporting Lyme Disease Action including many front benchers in the current government and my local MP Anne Milton Parliamentary Under Secretary of State (Public Health), Health (since 14 May 2010).

The questions about the safety of the blood banks, again an International concern.

It says on the cover
This book is for you if, you or a loved one has been diagnosed with
Multiple Sclerosis
ALS (Motor Neurons)
Rheumatoid Arthritis
Autism
Crohn's Disease
Alzheimer's
Parkinson's
ADHD
Scleroderma
Heart Disease

because these and other diseases can also be caused by Chronic Lyme Infection.

Of the above list I am in touch personally with at least one patient with each of those diagnosis and then found it to be Lyme Disease. The only exception being Alzheimer's, but then as research has found the DNA for Borrelia in the brain's of patients who have died of Alzheimer's I think that says it all. See Judith Miklossy's work here

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.

AUTISM VIDEOS

These excellent videos from Lymenaide are a must watch for parents with children suffering from Autism.

This Spring Lymenaide and And What Productions filmed an interview with Dr Chitra Bhakta.
Dr Bhakta is a DAN (Defeat Autism Now) and an LLMD. She spoke with us about Lyme Induced Autism, Lyme disease and treatment.

http://lymenaide.wordpress.com/

'When I started testing these (Autistic) children 8 out of 10 were testing positive for Lyme and Bartonella and other co infections of Lyme Disease.'

Dr Bhakta points out that Lyme is endemic throughout the World.

Her closing words are 'the tests are not the be all and end all.' (She had already pointed out that most of the tests for Chronic Lyme will turn out negative)

'Doctors are human beings and have fallibilities.'

'The best person is to have belief in yourself.'

For earlier posts on Autism and Lyme Disease enter Autism in the search in the right column or click here

IS IT REALLY AUTISM?

Dr Jones treats children with Lyme Disease many of those children present with symptoms similar to children with Autism and several of those children had been previously diagnosed with Autism. On long term antibiotics for their Lyme Disease there symptoms improve.

Below are extracts from the Hartford Advocate a well written article by Betsy Yagla


A 7-year-old boy named Timmy came in for an appointment.

At an earlier visit with Jones, five months prior, Timmy exhibited problems like low muscle tone and no expressive speech. Another doctor diagnosed him with autism when he was 2 years old. Timmy’s mom noticed that when he was on antibiotics, his behavior became better. He exhibited fewer symptoms associated with autism. After he went off his medication, though, his symptoms returned to full force.

Jones thought the boy had Lyme disease, not autism.
At that first visit, Jones says, he put his hands on Timmy’s cheeks and looked into his eyes: “I hope I have the key to unlock your brain,” he said. Timmy then squirmed out of Jones’s lap and began to run around the room.

At Timmy’s follow-up visit, one day after Jones received his punishment, Timmy “climbed into my lap, put my hands on his cheeks and said, ‘Thank you for giving me the key to unlock my brain.’” Jones says. “Then he hugged me.”

“That’s why I stayed in [medicine],” he says.


One of the reasons Jones is so controversial is because of patients like Timmy: Jones’ diagnoses and treatments call into question those of other doctors. While other doctors see autism or mental illness, Jones sees Lyme. Jones thinks one of the reasons he’s so disliked in the medical community is other doctors’ pride.

Sitting in a leather chair in his New Haven office, 81-year-old Jones does not look like a man who arouses passionate disputes. He’s wearing a blue Adidas tracksuit with his name embroidered on the back, and the type of black orthopedic sneakers you’d expect on a man his age.
Jones didn’t start out as a doctor — he was a divinity student at Boston University in the early 1960s. As an assistant minister with the Second Church Unitarians, Jones made house calls to people who couldn’t get out to go to church. Changing professions was a decision inspired by one of those visits: “I was in the home of an 80-year-old woman who was very badly stricken by arthritis. She grabbed my hand on the way out and said, ‘Please do something to help me in a real way,’ and that was it.”
He started focusing on cancer in New York, but moved to Hamden with his wife to raise a family and start a pediatric practice in New Haven. In the late ’60s, he noticed clusters of kids — several in a family — diagnosed with juvenile rheumatoid arthritis. Many had strep throat, he says. “When we treated them [for strep] with antibiotics, they got better. That was the beginning of it,” Jones says.

He saw more as time went on.

“It infected every part of the body, including the brain and the skin. We were treating them with six weeks of antibiotics. Then another six weeks if it didn’t work. There was a little boy, about 10 or 11, who was diagnosed with rheumatoid arthritis. We did several rounds of six weeks of antibiotics and a few weeks off. He did better on them, not off. He said to me, ‘If I’m better while I’m on the antibiotics, why don’t you keep me on them?’
“‘Well,’ I wondered ‘Why didn’t I think of that?’ He was on antibiotics for three of four years and now he’s in his late 40s and is perfectly well. From that point on, I started treating with antibiotics continuously until they were better and then for two months after that.”
That attitude is what’s turned Jones into the Pope of the Lyme disease community. It also turned him into a pariah of the academic and medical community.

To read the article in full from the Hartford Advocate click here

To read more about the controversy surrounding this Pioneering doctor have a look at CLADA website and there many blogs listed on the right hand side here

To read more of my posts on Autism enter Autism in the search engine on the right hand column on my blog or click here

To look at more information on Lyme Disease and Autism see the links in the right hand column of my blog or click here

To find out more about Lyme Disease visit the many links in the right hand column of this blog.

My own Arthritis and Muscle weakness improved significantly when given a chance course of antibiotics and this led my GP to suspect Lyme Disease. Many of the patients I talk with on Eurolyme had similar experiences so it was interesting to hear what Dr Jones says in the above article that many of his patients would improve on antibiotics and deteriorate when they stopped.

How many more children's Autism could be complicated or caused by a sneaky infection of Borrelia? Certainly at present this is something not widely researched or known by those doctors treating children with Autism.

The science is still evolving with Lyme Disease, Borrelia and it's many complex associated co infections, which currently are rarely tested for.

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

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.

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.