Sunday, 28 December 2014


POSTING UPDATE - A quick note to say that we are not meeting in Portcullis House after all - but going straight to the House of Commons.
Demetrios will write all the details later tonight - but briefly :
We go to entrance 8 (please see the map in the files of the group or download it from the Parliament web site))
which is known as the Cromwell Green Entrance; it's in St Margaret's Street.
We are being given a bigger room, Committee Room 14, for the whole of the meeting. It seats 170

There is to be a patient led Parliamentary Conference in the UK in January 2015 - details below

Lyme Disease Forum: 19th January, 2015

PART 1 - Atlee Room, Portcullis House: 1:00 p.m. to 2:00 p.m.
• Welcome speech from Rt. Hon. Simon Hughes MP 
• Words from Countess Marr 
• Meet and greet Opportunities

PART 2 - Committee Room 15: 2:00 p.m. to 5:00 p.m.
Attended by:Ruth Parry, Scientific Policy Manager, Department of Health (Micro-biologist, Virologist) 
Dr. Tim Brooks, Head of Rare and Imported Pathogens Laboratory, Public Health England, 
Amanda Semper, Scientific Program Manager, Rare and Imported Pathogens Laboratory, Public Health England (TBC).

Presentations by:
1. Dr. Armin Schwarzbach and Chris Moore 
2. Dr. Chris Newton and Dr. Beryl Beynon 
3. Peter and Denise Kemp Longman 
4. Dr. Mark Ashworth and Dr. Michael Wetzler 
5. Demetrios Loukas 
6. Q & A

Laptop and Projector will be provided in the Committee Room for presentations.
Final Q&A period will be for any discussion points that need raising following presentations.
People should leave questions for this final period rather than raising them while presentations are being given.

Regards, Michael Paul
Parliamentary Assistant 
Rt Hon Simon Hughes MP 
Minister of State for Justice and Civil Liberties 
MP for Bermondsey and Old Southwark 
House of Commons 

Those wishing to attend please email your name, email address and phone number contacts.To: 
Please title your email: LYME DISEASE CONFERENCE Attending
Proof of identification will need to be brought`along and presented at Portcullis House.
Please arrive at Portcullis House at least 30 minutes before the conference is scheduled to start, ie by 12.30pm.

A petition is to be sent to
Jane Ellison MP, Professor Dame Sally Davies and The Rt Hon Jeremy Hunt: 
'UK Lyme patients and concerned scientists and doctors have been preparing since May 2014 to meet with you: we hoped to inform you directly of our concerns about the dire state of diagnosis and treatment of Lyme Borreliosis and tick-borne diseases in Britain.'
'We cannot emphasise enough how much we need to talk with you and to explain directly what our concerns are. A panel of experts from Public Health England has been proposed to hear our presentations on your behalf.  Unfortunately, those same panel members have already heard similar presentations from our fellow patients and colleagues in several symposia and conferences over the last 2 to 3 years.  They are very welcome to attend but we also need fresh hearts and minds to appraise the overall situation, and in particular, a government minister from the Department of Health.'

Please go to the link to read the full details of the petition and if you live in the UK please add your voice and sign the petition.

Saturday, 13 December 2014


Federal Framework on Lyme Disease Act has passed in Canada.

The Senate has passed a private member's bill on Lyme disease, The legislation sponsored by Green party Leader Elizabeth May won Commons approval last June and now only needs royal assent to become law.
It calls on the government to call a conference of provincial and territorial ministers, medical experts and representatives of patient groups to develop a comprehensive Lyme disease strategy. Reported in the Huffington Post - 
Bill C-422 Federal Framework on Lyme Disease Act. 
For immediate release
12 December 2014
Senate Unanimously Passes Elizabeth May’s Federal Framework on Lyme Disease Act
OTTAWA - Elizabeth May’s Private Member’s Bill, C-442, the Federal Framework on Lyme Disease Act, was passed unanimously at third reading by the Senate the morning of Friday, December 12. The bill now awaits Royal Assent by the Governor General for it to become law.
“I am so thankful to my colleagues in the Senate, especially the bill’s sponsor Senator Janis Johnson, for passing C-442,” said Elizabeth May, Leader of the Green Party of Canada and MP for Saanich-Gulf Islands. “This victory belongs to all Canadians coping with Lyme disease and their loved ones. This bill never would have been passed into law without their advocacy and willingness to tell their stories.”
First introduced in June 2012, Bill C-442 was passed unanimously with multi-partisan support in the House of Commons in June 2014.  It will establish a framework for collaboration between the federal, provincial and territorial Health Ministers, representatives of the medical community, and patients’ groups to promote greater awareness and prevention of Lyme disease, to address the challenges of timely diagnosis and treatment, and to push for further research.
“The hard work of Minister of Health Rona Ambrose and the entire Lyme community was instrumental in making this bill a reality. I am also grateful to Senator Kelvin Olgilvie, Chair of the Standing Senate Committee on Social Affairs, Science and Technology, who helped to move C-442 through the committee process, after it was delayed by the shooting on October 22,” added Ms. May.
“C-442 is now the first piece of Green Party legislation in Canadian history,” stated Bruce Hyer, Deputy Leader of the Green Party of Canada and MP for Thunder Bay – Superior North. “I am proud of the way Elizabeth was able to work across party lines to pass the first Green Party bill. The passage of this bill will make such a tangible difference for those dealing with Lyme disease.”
Although it is rare for private member’s bills to be passed through both the House and Senate, Bill C-442 has received multi-partisan support from Senators and Parliamentarians, in addition to the Canadian Medical Association, the College of Family Physicians of Canada, and the Canadian Lyme Disease Foundation.
“Now that the bill has passed, I look forward to working with all relevant interest groups and governments, under the guidance of Health Minister Ambrose, for the national conference to develop the federal framework to deal with this dreadful illness,” concluded Elizabeth May.

Link to Senate hearing

The usual response from the IDSA caused last minute concerns 

Thank you Dr Cameron for your insights

Thank you Lyme Disease Action for reminding us to listen to the science (All the science) 

Thank you Elizabeth May and Canadian Advocates for Lyme disease patients, your success in paving a way forward is a shining example for other countries to follow.

Tuesday, 18 November 2014


I am saddened to hear of the death of Willy Burgdorfer.

Willy Burgdorfer was an American scientist born and educated in Basel, Switzerland, considered an international leader in the field of medical entomology. He discovered the bacterial pathogen that causes Lyme disease, a spirochete named Borrelia burgdorferi in his honor.[1] He was born in 1932.[2] He died November 17, 2014. 

Dr. Willy Burgdorfer Talks About Lyme Disease and Scientific & Medical Corruption

The above video is an extract from Under Our Skin documentary.

Dr Burgdorfer says -'The controversy in Lyme disease research is a shameful affair. And I say that because the whole thing is politically tainted. Money goes to people who have, for the past 30 years, produced the same thing—nothing.Serology has to be started from scratch with people who don’t know beforehand the results of their research. There are lots of physicians around who wouldn’t touch a Lyme disease patient. They tell the nurse, “You tell the guy to get out of here. I don’t want to see him.” That is shameful. So [this] shame includes physicians who don’t even have the courage to tell a patient, “You have Lyme disease and I don’t know anything about it.” link to full interview

Details of the documentary and the Sequel

Further information will be found through

Willy Burgdorfer was Keynote speaker at 12th International Conference on Lyme Disease and Other Spirochetal and Tick-Borne Disorders, April 9, 1999

Even then in 1999 he says 'Using silver impregnations and immunochemical staining, cystic material has been demonstrated in every animal and human tissue infected by B burgdorferi. As yet, it is not known whether these forms of Borrelia represent products of degenerated spirochetes or of surviving organisms capable of transforming to typical spirochetes once the favorable environmental conditions are restored. It is tempting to speculate, however, that the survival mechanism of spirochetes is responsible for the diverse pathology of these organisms as well as for their ability to survive as cystic forms thereby producing prolonged, chronic and periodically recurrent disease.' 

Research has developed even further since that presentation as can be seen in earlier posts on this blog about research into persistence of Borrelia.

Although the media will no doubt widely publish about the important legacy Willy gave to the World in identifying the borrelia spirochete as the cause of Lyme Disease, I post the above because it is unlikely that the media will fully report on the extent that Willy Burgdorfer supported the Lyme community in their fight for better serology and better treatment for those with persistent symptoms or Chronic Late stage Lyme disease.

Lyme Disease Action have summarized Willy Burgdorfer's work

Saturday, 8 November 2014


Ying Zhang, MD, PhD, on the hunt for better treatment options for patients with chronic persistent Lyme Disease.

An Optimized SYBR Green I/PI Assay for Rapid Viability Assessment and Antibiotic Susceptibility Testing for Borrelia burgdorferi 


Lyme disease caused by Borrelia burgdorferi is the most common tick-borne disease in the US and Europe. Unlike most bacteria, measurements of growth and viability of B. burgdorferi are challenging. The current B. burgdorferi viability assays based on microscopic counting and PCR are cumbersome and tedious and cannot be used in a high throughput format. Here, we evaluated several commonly used viability assays including MTT and XTT assays, fluorescein diacetate assay, Sytox Green/Hoechst 33342 assay, the commercially available LIVE/DEAD BacLight assay, and SYBR Green I/PI assay by microscopic counting and by automated 96-well plate reader for rapid viability assessment of B. burgdorferi. We found that the optimized SYBR Green I/PI assay based on green to red fluorescence ratio is superior to all the other assays for measuring the viability of B. burgdorferi in terms of sensitivity, accuracy, reliability, and speed in automated 96-well plate format and in comparison with microscopic counting. The BSK-H medium which produced a high background for the LIVE/DEAD BacLight assay did not affect the SYBR Green I/PI assay, and the viability of B. burgdorferi culture could be directly measured using a microtiter plate reader. The SYBR Green I/PI assay was found to reliably assess the viability of planktonic as well as biofilm B. burgdorferi and could be used as a rapid antibiotic susceptibility test. Thus, the SYBR Green I/PI assay provides a more sensitive, rapid and convenient method for evaluating viability and antibiotic susceptibility of B. burgdorferi and can be used for high-throughput drug screens.

Press release 
'Zhang and colleagues used the new test – called the SYBR Green I/PI assay – to identify several antibiotics that showed promise against the persistent bacteria that appear immune to the current Lyme antibiotics That paper has been the most popular on the journal's website, and patients, doctors and researchers have been contacting Zhang interested in testing out the most promising of the newly identified drugs.'
FDA approved drugs for persister cells of Borrelia - links can be found on a previous post 
Some studies have said that up to 20% of patients may suffer symptoms long after early treatment for Lyme Disease but in a presentation by Dr. Adriana Marques at a CDC webinar she claims 'Studies of patients with erythema migrans have shown that 0-40% of the patients have persistent or intermittent non-specific symptoms of mild to moderate intensity 6- 24 months after therapy'
'Zhang said that the impact of the disease can be felt after treatment ends in part because some of the live bacteria remain active in the system after the drugs have finished. With no definitive test for the chronic condition or known drugs to treat it, Zhang said the team’s work can provide extra benefits in this area. 
“There are a significant number of people who are sick and desperate for a cure for their Lyme disease symptoms months and even years after they have been told they are cured of the disease,” Zhang said. “The current drugs we use aren't good enough for these persistent cases. This is why I have been getting so many calls and e-mails about our test and the drugs we have identified.” '
'The study was funded by the Lyme Research Alliance and, the press release says. From the abstract:
The SYBR Green I/PI assay was found to reliably assess the viability of planktonic as well as biofilm B. burgdorferi and could be used as a rapid antibiotic susceptibility test. Thus, the SYBR Green I/PI assay provides a more sensitive, rapid and convenient method for evaluating viability and antibiotic susceptibility of B. burgdorferi and can be used for high-throughput drug screens.'

A comprehensive report can be found:-

Saturday, 25 October 2014


Prof. Judith Miklossy held a very interesting presentation at the NorVect Conference 2014. In particular she looked at the connection between Lyme disease and Alzheimer´s disease. Here is an excerpt. All presentations from the NorVect conference can be watched in full length at

All 14 excerpts can be viewed 

NORVECT website


For just under £15 you can buy access to the full presentations from Norvect
For more information about Prof Judith Miklossy's research work visit her website

Tuesday, 21 October 2014


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.


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.,
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, 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?
MedHypotheses 2005; 64(3): 438-48.
(2)Geographical and Seasonal Correlation of Multiple Sclerosis to Sporadic
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.
14th International Scientific Conference on Lyme Disease and other Tick-borne Disorders.April 22-23, 2001, Hartford, Connecticut.

Sunday, 19 October 2014


Many people have the experience of falling into a chronic illness following a known Tick Bite/s although Only 40-50% of patients can recall a tick bite. (1)

Not everyone gets a Bulls Eye or Erythema Migrans rash although it is diagnostic of Lyme Disease, erythema migrans - may be absent in up to 30% of cases (1)

The usual NHS tests used for Borrelia ( Lyme Disease) are two tier antibody tests, there are acknowledged limitations to these tests. (2)
a) indirect - measure of immune response and not current infection
b) do not include all known species or strains
c) dependent on a person's immune response antibiotics, steroids or immune problems can affect response.
d) Undulatory immune response can affect test results.
e) Interpretation of bands and actual bands reported on.

There are better testing methods that are sometimes used in a research situation, proteomics (3) and several blood microscopy and culture methods described which could be researched further and utilised in the UK. (4)

Ticks are known to carry a soup of microbes (5) many of which are known to cause human health problems there is no research into the synergistic way these infections can work once infecting the human host.

Testing is limited for Tick borne infections and may not be sufficiently sensitive for different strains of Babesia, Bartonella as well as Borrelia. (6)

Without good testing then clinical diagnosis is what we are left with. Currently there is little experience within the NHS to diagnose a late or chronic stage of Lyme Disease using a clinical diagnosis - most NHS doctors dismiss Chronic Lyme disease out of hand due to historic misinformation (7) - current guidance was found to have many uncertainties by James Lind Alliance research - Dept of Health and HPA(PHE) over saw that research. (8)

Science moves on but medicine is slow to acknowledge change and patients suffer.

CDC are at last discussing persistence of Borrelia - (9)

Dr Stephen Barthold NIH researcher of 25 years with Borrelia in animals says '100% of animals remain infected after antibiotics - Borrelia persists as the rule not the norm'  (10)

Many studies acknowledge persistence of Borrelia in humans. (11) 

Johns Hopkins recently studied Borrelia persistence in vitro using standard FDA drugs (12) -  about 70% persister cells found after antibiotics used for treating Lyme Disease. (13)

One huge stumbling block to treating patients on longer courses of antibiotics is attitude and concerns over antibiotic resistance. However this needs to be considered more carefully in the light of Prof Kim Lewis work. He believes the problem is not resistance but persistence and has researched E Coli, MRSA, TB and  Pseudonyms finding a compound that helps deal with the persister cells. His three videos are very informative. (14 )

Prof Lewis has been given a grant to research into persister cells in Borrelia he has already found that the compound that works with MRSA does not work on Borrelia persisters. (15)

I saw doctors with Bites Erythema Migrans rashes, Summer flu, migrating arthralgias and yet it took 5 doctors and 3 Rheumatologists 4 years to diagnose me. As my health deteriorated I was diagnosed with Fibromyalgia, ME/CFS, Musculo skeletal Disease, Polymyalgia Rheumatica - a chance course of antibiotics improved my symptoms of joint pain and muscle weakness and led GP to consider Lyme Disease ( there had been other cases infected locally) my records confirmed my history. My NHS and private tests were negative but I'd been given 20 months of steroids for wrong diagnosis as well as antibiotics both could have skewed the test results. With the help of a private doctor and an open minded GP  I was treated empirically on many many months of antibiotics - my GP could see my response and recovery on antibiotics and decline when antibiotics stopped. I had been retired early on ill health grounds from the Civil Service, at my worst I struggled to raise from a chair or walk across a room I was unable to climb up or down stairs properly for 3 1/2 years now I am much recovered and can climb stairs, cycle and live a normal pain free life.
I was fortunate.

In the light of so many uncertainties and lack of adequate testing, patients who are sick and need help now read the research papers and some are fortunate to get treatment. However the vast majority are refused antibiotics by NHS doctors based on  misinformation. If antibiotics are found to help improve the patients condition then doctors could treat empirically informing the patient of the possible adverse effects. Patients should be allowed choices in their care.

(10) US Congressional Hearing on Lyme Disease -Dr Barthold at 53 mins in

(11) a- Phillips, S. (2012). Active infection: Clinical definitions and evidence of persistence in Lyme disease- Contesting the underlying basis for treatment limitations for early and late Lyme disease, as well as chronic Lyme disease, alternatively known as “Post-Lyme disease syndrome.”
 b- Barbour, A. (2012). Remains of Infection. Journal of Clinical Investigation, 122(7), 2344-2346.
 c- Lin, X., McHugh, A., Damle, N., Sikand, V., Glickstein, L., Steere, A. (2011). Burden and viability of Borrelia burgdorferi in skin and joints of patients with Erythema migrans or Lyme arthritis. Arthritis and Rheumatism, 63(8),2238-2247.

d- Schmidli, J., Hunzicker, T., Moesli, P. (1988). Cultivation of Borrelia burgdorferi from joint fluid three months after treatment of facial palsy

due to Lyme borreliosis. Journal of Infectious Diseases, 158, 905-906.
e- Haupl, T., Hahn, G., Rittig, M., Krause, A., Schoerner, C., Schonherr, U., … Burmester, G. (1993). Persistence of B. burgdorferi in ligamentous tissue from a patient with chronic Lyme borreliosis. Arthritis and Rheumatism, 36, 1621-1626.

(14) a. The Paradox of Chronic Infections 
       b.The Principles of antibiotic Discovery 
       c.Uncultured Bacteria