CHRONIC OR LATE LYME NEUROBORRELIOSIS

CHRONIC OR LATE LYME NEUROBORRELIOSIS
For more than 30 years there has been discussion about whether Lyme Disease can continue into a Late Chronic stage of illness. 

Published in The Open Neurology Journal Volume 6 a series of papers on 

Chronic or Late Lyme Neuroborreliosis: Present and Future link http://benthamopen.com/TONEUJ/VOLUME/6/ISSUE/001/ 

Included in this important series of papers:- 

 Chronic or Late Lyme Neuroborreliosis: 
Analysis of Evidence Compared to Chronic or Late Neurosyphilis, 2012; 6: Pp. 146-157
Judith Miklossy
Published Date: (28 December, 2012)

Whether spirochetes persist in affected host tissues and cause the late/chronic manifestations of neurosyphilis was the subject of long-lasting debate. Detection of Treponema pallidum in the brains of patients with general paresis es-tablished a direct link between persisting infection and tertiary manifestations of neurosyphilis.Today, the same question is in the center of debate with respect to Lyme disease. The goal of this review was to compare the established pathological features of neurosyphilis with those available for Lyme neuroborreliosis. If the main tertiary forms of neurosyphilis also occur in Lyme neuroborreliosis and Borrelia burgdorferi can be detected in brain lesions would indicate that the spirochete is responsible for the neuropsychiatric manifestations of late/chronic Lyme neurobor-reliosis.The substantial amounts of data available in the literature show that the major forms of late/chronic Lyme neuroborreliosis (meningovascular and meningoencephalitis) are clinically and pathologically confirmed. Borrelia burgdorferi was de-tected in association with tertiary brain lesions and cultivated from the affected brain or cerebrospinal fluid. The accumu-lated data also indicate that Borrelia burgdorferi is able to evade from destruction by the host immune reactions, persist in host tissues and sustain chronic infection and inflammation. These observations represent evidences that Borrelia burgdorferi in an analogous way to Treponema pallidum is responsible for the chronic/late manifestations of Lyme neuroborreliosis.Late Lyme neuroborreliosis is accepted by all existing guidelines in Europe, US and Canada. The terms chronic and late are synonymous and both define tertiary neurosyphilis or tertiary Lyme neuroborreliosis. The use of chronic and late Lymeneuroborreliosis as different entities is inaccurate and can be confusing. Further pathological investigations and the detection of spirochetes in infected tissues and body fluids are strongly needed.

Go to the above links for access to the full PDF and other papers on this subject.

There are many excellent manuscripts guiding present and future research for Lyme disease, such as Brian Fallon at Lyme and Tick-borne Diseases Research Center, Columbia University  here  
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Judith Miklossy has worked in the field of Lyme Neuroboreliosis  and the field of Alzheimer's research for some years, her website for links to her work is here 

From Judith's website -

'Highest priority should be given to this emerging field of research. It may have major implications for public health, treatment, and prevention of Alzheimer disease as adequate anti-bacterial drugs are available. Treatment of a bacterial infection may result in regression and, if started early, prevention of the disease. The impact on reducing health-care costs would be substantial. As it was the case for paretic dementia in syphilis, one may prevent and eradicate dementia in Alzheimer disease.'

also links to Prevention Alzheimer International Foundation here

'The goal of the foundation is to support and accelerate this new emerging field of research on Alzheimer's disease and related chronic inflammatory disorders. Some pathogens have been already analyzed and serological and diagnostic tests for their detection are commercially available. Others still need to be characterized in order to detect and eradicate them'

Clearly much work needs to be done and funding is needed urgently, contributions can be sent to Prevention Alzheimer International Foundation details can be found through the above link

Note this is an International tax exempt foundation and research center as they represent the cause of patients Internationally without any frontiers. 


Address postal: Prevention Alzheimer International Foundation
1921 Martigny-Croix, CP 16, CH-1921, Switzerland
Tel: + 41 27 722 0652;
Cell: + 41 79 207 4442                                                    
President Judith Miklossy MD, PhD, DSc 
Banque Cantonale du Valais, 1950 Sion, Switzerland
IBAN: CH71 0076 5001 0105 7880 3,  Account number: 101 057 8803  -  63452

Donations can be transferred to the bank account of the foundation, the online payment will be available later. 

IMPROVED TESTS FOR BORRELIA - LYME DISEASE

THIS IS IT FOLKS!


Int J Med Sci 2013; 10(4):362-376. doi:10.7150/ijms.5698

Research Paper

Improved Culture Conditions for the Growth and Detection of Borrelia from Human Serum

Eva Sapi^1,2 , Namrata Pabbati¹, Akshita Datar¹, Ellen M Davies¹, Amy Rattelle¹, Bruce A Kuo¹

1. Research Division of Advanced Laboratory Services Philadelphia PA, USA;
2. Department of Biology and Environmental Science, University of New Haven, West Haven CT, USA.

How to cite this article:
Sapi E, Pabbati N, Datar A, Davies EM, Rattelle A, Kuo BA. Improved Culture Conditions for the Growth and Detection ofBorrelia from Human Serum. Int J Med Sci 2013; 10(4):362-376. doi:10.7150/ijms.5698. Available fromhttp://www.medsci.org/v10p0362.htm

Abstract

In this report we present a method to cultivate Borrelia spirochetes from human serum samples with high efficiency. This method incorporates improved sample collection, optimization of culture media and use of matrix protein. The method was first optimized utilizing Borrelia laboratory strains, and later by demonstrating growth of Borrelia from sera from fifty seropositive Lyme disease patients followed by another cohort of 72 Lyme disease patients, all of whom satisfied the strict CDC surveillance case definition for Lyme disease. The procedure resulted in positive cultures in 47% at 6 days and 94% at week 16. Negative controls included 48 cases. The positive identification of Borrelia was performed by immunostaining, PCR, and direct DNA sequencing.

In summary, this report provides evidence for the value of a novel method for culturing Borrelia from human serum samples. The inclusion of key components such as modified culture media plus a unique culture environment has resulted in an improvement in the ability to cultivate this organism. This new culture method directly addresses the issue of the low numbers of Borrelia in clinical samples by amplifying their quantity through long term culture in which Borrelia were able to thrive for as long as eight months (data not shown). The versatility of this method allows for samples to be harvested from the culture at any point in time for further study, and it also serves as a source of Borrelia for a variety of direct detection techniques as well as for additional research. Finally, this unique culture method could play an important role in providing useful diagnostic information for select Lyme disease patients who might have tested negatively by other methods.

Acknowledgements

The authors thank Dr. Joseph Burrascano, Jr., Dr. Alan MacDonald and Dr. Parkash Gill for helpful discussion.

Go to the link to read the full paper here 

WORLD BANKING CRISIS AND CURRENT RECESSIONS COULD HAVE BEEN AVOIDED

JPMorgan's $6 Billion Case of Lyme Disease

A central reason a bank known for its mastery of risk management could make such a huge mistake: One of its top executives, chief investment officer Ina Drew, 55, succumbed to the most human of problems: She got sick, apparently with Lyme Disease and, starting in 2010, missed out on chunks of time in the office, where she had been managing clashing personalities and internal rivalries and making sure that no one took on too much risk.

This was posted in Forbes in May 2012  here and also in The New York Times here 

So clearly as Ms Drew was having time off sick in 2010 and 2011 with her Lyme Disease she was not cured by a few weeks antibiotics advocated by our IDSA Lyme Disease Guidelines.

Not only have these IDSA Lyme Disease guidelines wrecked havoc on thousands of patients lives around the World, because doctors adhering to those guidelines refuse ongoing treatment that for many of us have restored our health and lives, but also it would seem they may have been instrumental in the loss of Billions from JP Morgan's and thus contributed to the World banking crisis and recessions most countries are struggling with today.

It is way past time Lyme Disease and other Borreliosis and Tickborne Diseases were properly recognised for what they are capable of being, chronic, relapsing and persistent infections. 

Perhaps Ms Drew with her background and  now experience of Lyme Disease will put her weight into advocating for that recognition to come about. Science is there that shows the IDSA Guidelines to be too restricted with many uncertainties, it is having the will to look at the science and help the patients.

LYME PATIENTS AND FRIENDS EVERYWHERE PLEASE SIGN THIS PETITION

Reform the Infectious Disease Society of America Treatment Guidelines for Lyme Disease

Lyme disease is at epidemic levels, posing a significant threat to public health. Lyme can lead to chronic and debilitating effects if not properly treated. Lyme is leaving masses of people in progressive states of illness and financial ruin. The Infectious Diseases Society of America's treatment guidelines are to blame, they promote the idea that Lyme is a simple, rare illness that is easily cured with 30 days of antibiotics. This is not true. Insurance companies are denying payments for medications even when deemed medically necessary after 30 days. Doctors who treat Lyme patients are being investigated and prosecuted for not conforming to such guidelines. Please sign this petition to reform IDSA guidelines and allow doctors NOT Insurance companies, to decide what is medically necessary.

The above is a petition to the Obama administration which can be found here  

Please go to and sign this petition, everyone throughout the World has their treatment influenced by these outdated Lyme Disease Guidelines and so it is in all our interests to sign this petition. You can register and sign from outside US.

It must be signed before February 10th 2013. 

UNCERTAINTIES IN NHS GUIDANCE ON TREATING LYME DISEASE

Uncertainties in Lyme Disease.

The Lyme Disease Action project with the James Lind Alliance has now officially 

confirmed that there are uncertainties in Lyme disease diagnosis and 

treatment. Doctors and patients have agreed on the top 10 priorities for 

research at a workshop observed by the Department of Health and the Health 

Protection Agency.

To read all about this visit Lyme disease Action website link here  

UK Lyme Disease Priority Setting Partnership

The Top 10 Research Priorities

The following are the top 10 uncertainties in the diagnosis and treatment of Lyme

disease agreed by clinicians and patients.

 What is the best treatment for children and adults presenting with a) early Lyme 

disease without neurological involvement and not including erythema migrans and 

b) late Lyme disease of any manifestation? To include consideration of drug(s), 

dose, duration. 

 What key questions (clinical and epidemiological) should be considered to help 

make a diagnosis of Lyme disease in children and adults in the UK and would a 

weighting table be useful? 

 How effective are the current UK tests in detecting infections due to the 

genospecies and strains of B burgdorferi sl in the UK and which single test and 

what combination of tests performs best in diagnosing or ruling out active Lyme 

disease. Should stage of the disease and patient age be taken into account when 

interpreting these tests?

 What are the outcomes of cases where long term treatment has been used?

 What is the optimal course of action if symptoms relapse after a treatment course 

is finished?

 What is the optimal course of action if symptoms persist after initial treatment: 

should antibiotic treatment be continued until all symptoms have resolved or 

should a different dose or different antibiotic be used and what is the course of 

action if treatment appears to fail completely?

 Are continuing symptoms following conventional recommended treatment due to 

continued infection, or an immune response or other process?

 How common is relapse and treatment failure and is it related to disease stage, 

gender, co-infections or any other factor?

 Are there long-term consequences if treatment is delayed? 

 Can Lyme be transmitted via other means: person to person sexually, 

transplacentally or by breast feeding; through organ donation; through blood 

transfusion?

link here  

There were certainties - including 

Does EM provide an ‘accurate’ clinical diagnosis of LD?

Yes it does.

Stanek G, Fingerle V, Hunfeld K, Jaulhac B, Kaiser R, Krause A, et al. Lyme borreliosis: clinical case definitions for diagnosis and management in Europe. Clinical Microbiology and Infection. 2011 Jan;17(1):69–79.

Is EM a more or less ‘accurate’ sign of LD in children?

Yes. Reference as above

How is EM defined?

See Stanek et al 2011 as above for description of European manifestations.

Should tests to exclude LD be carried out in patients who have a tick 

bite but don’t get EM?

In symptomatic patients, yes. EM is not always present

Stanek et al 2011

Tuerlinckx D, Glupczynski Y. Lyme neuroborreliosis in children. Expert review of anti-infective therapy. 2010 Apr;8(4):455–63.

Sadly many Doctors are unaware of these certainties and thus miss that early 

indication of Lyme Disease for those of us who present with EM following tick 

bite.

The above top ten uncertainties are logged on the 

NHS Evidence – UK Database of Uncertainties about the Effects of Treatments (DUETs)  here and hopefully will attract much needed research.

Meanwhile the above uncertainties need to be recognised among our doctors. I was pleased to hear that the Dept of Health and the Health Protection Agency were present during this process. 

In correspondence from the Dept of Health, Earl Howe, 12.12.2011 via my MP Anne Milton .The Dept of Health says 'The Department is working with Lyme Disease Action (LDA) and I am aware that you as Health minister, have met with LDA representatives. We are supporting its initiative with the James Lind Alliance and await the findings of their review.'

I look forward to more information about these uncertainties being relayed to our treating doctors and consultants and changes to existing guidance from the Dept of Health via the Health Protection Agency reflecting that there are many uncertainties, instead of the current restrictive guidance based more on opinion than scientific data. 

AUTISM - LYME DISEASE - ANTIBIOTICS

At the 2012 ILADS conference Mason Kuhn did a most excellent presentation 

Scientific Support for the Effectiveness of Treating Children Comorbid with Lyme Disease and Autism Spectrum Disorder

Mason Kuhn, MS & Robert C. Bransfield, MD

A preview and his slide show can be seen on the ILADS website here a further livestream event will be held for Europe on Saturday 8th December and 9th December details here  

Mason's wife has started a blog of their son's journey - Our Lyme Autism Journey here with links to the published research from her husband Mason Kuhn and Dr Bransfield.

My simple summary of his presentation

Child A  normal until 18 months 

loss of all vocabulary, hand flapping - diagnosed with Autism

about  a year later Mother with CFS diagnosis of many years gets diagnosed with Lyme Disease - Child A also gets diagnosed with Lyme Disease ( Dr Alan MacDonald has done studies and found Lyme Disease (Borrelia) in aborted fetus and also umbilical chord)

Amoxycillin antibiotics given to Child A within 10 days vocabulary returned and hand flapping ceased - other antibiotics were given later.

Someone in the audience asked the question about vaccination - I think the answer was that it was after his MMR vaccine that his Autism began.

My comments

There is quite a high incidents of mothers with CFS who have children with Autism.

Samuel Shor has published research about cases of CFS who actually have Lyme Disease - he also presents at ILADS conference on his CFS/Lyme research but there is a post on this blog to another presentation from Samuel Shor here

It is recognised that Lyme Disease can remain in our system for many years and then something can affect our immune system and act as a trigger so the patient becomes ill.

Testing for Lyme Disease is problematic

The true incidents of Lyme disease in the population is still not known - here in the UK several research papers suggest that it is likely far more than thought - some of these papers are mentioned on this blog. Health Protection Agency (HPA) recognise the true incidents is greater than those with positive serology and some experts suggest it could be 10x the numbers HPA collect. 

I have posted previously about Treating Autism with antibiotics a study in France here 

Prof Montagnier is taking an interest in this field earlier posts here and here

Dr Jones US has treated many children over many years with Lyme Induced Autism here

Dr Bhakta a Dan practitioner is also finding children with Autism respond to antibiotics  here

IS LYME DISEASE IN YOUR AREA?

The first case of Lyme Disease that I heard about recorded in the Guildford Surrey area was in 2007, since which time there have been many more cases nearly 30 that I have got to know and no doubt  many more that I won't have heard about and yet there is little effort to warn the general public or advise our clinicians.

This recent news hopefully will help eventually translate into action to raise awareness among clinicians and the public.

'According to Marm Kilpatrick, who studies the ecology of infectious diseases at the University of California, Santa Cruz, a broad range of human activities can affect the spread of zoonotic diseases. In an article in the December 1 issue of the British medical journal Lancet, Kilpatrick and coauthor Sarah Randolph of the University of Oxford describe how widespread land-use change, globalization of trade and travel, and social upheaval are driving the emergence of zoonotic vector-borne diseases around the world. The article is part of a special series of papers focused on emerging zoonotic diseases.'

'The incidence of any vector-borne disease involves a complex interplay of multiple factors affecting animal hosts, vectors, and people. Kilpatrick and Randolph emphasize that control of these diseases requires combined efforts by clinicians and public health officials to treat patients, promote behavior likely to minimize the risk of infection, and advise on efforts to reverse the ecological drivers of transmission through vector control, urban planning, and ecological restoration.'

Scienec Codex here 

Lancet here

Join the discussion on Lymenet forum here