Tuesday, 20 January 2015


My report back from the Parliamentary Meeting in the House of Commons UK on Lyme Disease -
Just a few notes, apologies for any misunderstandings that may occur it was difficult to hear at the back and see the detail of some of the slides. Some of the presentations will become available and transcripts of the latter part of the meeting I will add links on this post when they become available.

The Meeting was opened by Simon Hughes MP welcoming us to this important meeting. Demetrios Loukas one of his constituents approached him with the problems he was having with the NHS over diagnosis and treatment of Lyme Disease. Demetrios invited Simon Hughes to the protest rally held in Manchester in May 2014 where Simon was able to discuss with many other patients and hear their similar experiences. Since Simon and Demetrios have worked together to bring this meeting about - an opportunity for the patients to present their case.

The Countess of Mar Chaired the meeting, giving thanks for arranging it and quoting several phrases such as Absence of evidence is not proof of absence.
She mentioned cultivation of the bacteria and the need to look at them with a microscope.
Patients are told negative tests mean they don't have Lyme Disease and experts refer to Lyme as a 'Fashionable' Disease and that negative serology  means you do not have Lyme.
USA CDC reported exponential growth of cases and then a levelling off but this was due to counting methods not a reduction in real numbers - in 2012 CDC reported increases to 300000 a year.
Germany 2011 800000 cases of Lyme.
Questions statistics for England as they are so much lower than other countries. (Scotland higher than England)

Dr Armin Schwarzbach presentation
Dr Schwarzbach declared no financial interests and that he was here as a private man to assist.
Borrelia Burgdorferi is an organism that is 15 million years old.
The oldest patient is Otzi the Iceman
2012 map showing areas of different species of Borrelia 
Pleomorphic forms including biofilm like colonies should be taken into account see his latest paper
He then discussed early responses to infection with Borrelia
20% feverish reaction but only lasts a few days
30-40% of patients only, develop a Bulls Eye rash
30-40% only, of chronically infected cases remember a tick bite
Bulls eye rash - needs to be treated
Children are of a very high risk of tick attachment especially behind the ear and in the hair.
Possible to get multifocal EM rashes anywhere on the body
Stage 2
Bells Palsy - cerebral spinal fluid infection
Often referred to as a swollen knee but may not be the knee
Acrodermatitis chronica atrophicans - ACC - an infection of the skin

Laboratory results - Dr Schwarzbach's speciality
Problems with ELISA
Showed a table of studies on sensitivity average being 43% - result false seronegativity
Problems with Western Blots
IgM Western Blot can remain positive up to 18 months 
Spinal Tap - in one study only 1 in 27 patients with proven Lyme Disease had positive spinal tap.
Shows a list of symptoms found in Lyme Disease patients and he says all symptoms listed are said to be non specific, as they are found in other diseases, but if found after a tick bite then they are specific.
A doctor needs over an hour to look at a patient to consider all the symptoms.
He talked about a doctor in the Netherlands doing LTT and ELISPOT which gives a response on the cellular level as opposed to Western blot looking for antibodies.
Borrelia Elispot (T cell specific) better specificity and sensitivity than Western Blot.
Can not exclude any disease in the World by a laboratory test.
He quotes numerous diseases linked to Borrelia - Alzheimers, MS Meningitis, CFS, etc
In early Lyme treat until the Bulls eye rash has gone.
Doxycycline, macrolides
Need to treat children and pregnant women
Stage 2 Lyme
Cephalosporins, Penicillin G and Macrolides  
Guidelines rely on Klempner study 2001 but there are many criticisms- patients selected had been sick average 4.7 years and already failed similar treatments. All guidelines focus on Klempner study of just 50/60 patients - these dictate guidelines for the whole world! Yet other countries have different sub species.
Several studies found differently 
Dr Cameron - study not included in the guidelines but found significant improvements.
Fallon - improvements but symptoms returned when treatment withdrawn.
A comparison chart of what USA CDC guidance says compared to other doctor opinion .
- studies ELISA v Immunoblot
- short term v long term treatments
- need new antibiotics
- basic courses for GP's
- information for population and doctors on prevention

Dr Ashworth 
Dr Ashworth is Demetrios GP and became involved trying to help Demetrios.
He says in medicine Doctors need to keep an open mind and a listening ear. With Lyme Disease we can not say it can not be Lyme Disease.
Referring to Demetrios he said we have been on a journey together - when to treat and when not to treat - we need to keep listening and keep an open mind

Chris Moore  
Is a director of a Nordic group involved with laboratory tests.
Borrelia - should have been screening for this infection differently.
He thanks Dr Schwarzbach and Dr Ashworth.
Patients are very knowledgeable about this disease, they are looking and seeking.
Large proportion have Borrelia.
Majority of patients have to find their own treatment.
Do we want our NHS to continue like this?
New Technology
Every laboratory would tell you their own testing was the best.
We need to be critical and don't just accept test report positive or negative.
Works with private doctors predominantly only sees 5/6 patients a day.
He started dealing with Lyme Disease cases in 1990's  but found clinical signs and negative test results.
Finding new technologies - pushing borders.
Borrelia is recognised as most common vector borne disease in Europe by the WHO report 10 years ago. 2011 Eurosurveillance report said the same.
It is active people getting these infections.
Ticks living longer more of them ( climate change)
infecting more people with much greater chance of people getting Borrelia.
Everywhere it is Top down hierarchy - gives brief history of medical delay in accepting advances in science quotes H. Pylori thought to be bacterial infection in 1907 but not until Barry Marshall infected himself and cured infection did medicine acknowledge in 2005.
Must not allow the same to happen with Borrelia we have the knowledge.
Compare delayed diagnosis with quick diagnosis
length illness, quality of life, improved health,loss of work-unemployment, income, etc
Short term costs to society early doctor visits compared with long term costs of hundreds of thousands of pounds.
Why no changes in reported cases by NHS?
Problems are compounded by inappropriate laboratory tests
NHS must consider better testing
Doctors should be advised to treat the EM rash
Should be public information campaign so people can protect themselves and get early treatment.

Dr Michael Wetzler
Nice guidelines do not allow a GP to give IV antibiotics
As a GP I am not in a position to differentiate with different tests
Talked about the recent Cuomo Law in New York State which prohibits the state authorities from investigating doctors who treat Lyme patients with a different approach than the Guidelines ( my link to details of this 
http://www.poughkeepsiejournal.com/story/news/health/lyme-disease/2014/12/18/cuomo-signs-lyme-disease-bill/20576915/ )
Been involved with complementary medicine, mentions ILADS 
Recommendations for support treatments for recovery from Lyme Disease - Probiotics, multivitamins, CoQ10, Vit B, Magnesium, transfer Factor etc.
He is happy to help patients but is keen that NHS is more open and broader to help patients.

Dr Chris Newton 
Scientific adviser to the Well One clinic
Confessed to being nervous because patients were the experts - we should be but in reality you are.
Western Blot methodology is awful and should not be used in anything other than research - it has improved but should not be the method to use.
Mentions Michael Cook's recent paper on tick transmission times
Detailed diagram of Immune system's response  after a tick bite.
Immune response but many reasons why the immune system might not respond.
We age differently and the immune system ages differently than chronological age.
What chronic stress does to the endocrine system.
Current dietary guidelines - carbohydrate induced inflammation.
T3 test does not show what goes on in body system detailed discussion.
Quotes evidence of infection documented after 16 hours of attachment of tick.
Mentions the Bristol study on ticks using dogs as sentinel hosts - suggests correlation for human risk.
Questions role of other vectors such as mosquitos.
Sexual transmission International group published in 2014 peer reviewed paper
Microscopy people doing it themselves
Dr Alan MacDonald work using FISH and PCR
European microbiologists
Peter Kemp who presents later 
Michael Cook 
Results are not accepted by NHS so no antibiotics.
He said I'm not a clinician, I'm a lab technician but  antibiotics should be given if sufficient clinical suspicion and should accept the different labs and private tests.
He said - I would go for best Lyme Blot ( discard ELISA) and use PCR
There are other factors involved such as genetics, mentions MTHFR Factor (Genetic mutation)
Slides from Dr MacDonald showing fluorescence DNA - recognises something in Borrelia as opposed to PCR. 
With nested PCR you are amplifying millions times.
Post GP/Consultant/Specialist
after antibiotics, need to concentrate on gut microbiome
Study of people with diabetes had much higher level of bacteriema in gut. 
Discussed inflammation and effect on immune system and TH1 also innate immune system
Chronic stress damages receptors of immune system causing chronic inflammation. 
Mentions Rife but prefers to discuss Electromagnetic frequencies which he believes stress cells. Quite a lengthy discussion about this.

Dr Beryl Benyon
Well One Clinic
She set up a social enterprise helping in Romania and needed funds so she set up a clinic to support her enterprise.
Lyme patients started going to her and she became interested and brought Chris in for laboratory diagnostics.
Then introduced Rife.
Found patients were coming back for more antibiotics so started to use rife.
Patients travel long distances to the clinic and not other places to go for treatment other than Breakspear.
Don't claim to cure.
250000 ME patients in the UK
GP's are now being monitored on antibiotic use. Which is already having an effect on patients even with things like UTI's.

Peter Kemp 
Treponema spirochetes - over 100 years ago were being viewed using darkfield microscopy and it is still used today to diagnose syphilis.
Peter continued to talk us through some detailed slides and videos of his own microscopy work - using staining to flourese the Borrelia and some where he used Beacon probes specific for Borrelia DNA - some of the latest technology.
He challenges Porton Down over their approach and denial of this disease.
I understand Peter will provide details of his presentation which I will link to when available.

Denise Longman
Denise gave us a brief epidemiological history - I know she will provide links to her slides and presentation and it will speak for itself.

Time was short Lady Mar curtailed Peter and Denise in order to give Dr Tim Brooks an unplanned opportunity to reply.

Dr Tim Brooks RIPL
Head of Lyme Borreliosis testing at Porton Down and the man to go for for NHS expertise on Lyme borreliosis.
He started to talk about lab tests used, amongst interruptions.
He said that he had helped to raise awareness with Estates/Landowners? Loud protest from the audience he quoted the New Forest.
He said he provided an extended Lyme panel if doctors contacted his lab he would arrange to do this (my understanding is that this side steps a negative ELISA and will do Western Blot even if ELISA negative plus several other known pathogens that ticks can transmit in UK)
Dr Brooks said he could only advise doctors of the infections patients had.
He said he had looked at other testing methods and compared with his tests    (Western Blot) 
He extended invitation for Peter Kemp to visit Porton - to do PCR  (not to do microscopy despite known problems with PCR)
Out of time with numerous questions and interruptions the meeting was closed.

In comment I will say that all the scheduled presentations were excellent, informative and well received by the audience.
Denise put across the patients feelings so well as was acknowledge not just with a round of applause but a standing ovation.
The room had a capacity of 170 with only a handful of empty seats so well attended. There were a number of doctors present but I am not sure which MP's were present not many I suspect, nor were there many from PHE or Dept of Health if any from the later.

Lady Mar thanked everyone and said that Dr Brooks had had a difficult time taking on the work from the previous mess that had been left by the management of Lyme Disease by the Health Protection Agency. 

So we have a Peer of the realm acknowledging what a mess the Health Protection Agency had made of handling Lyme Disease and other than the fact that under new guidance PHE are talking to representatives from Lyme Disease Action, there is no visible sign that anything has yet changed for patients - testing, diagnosis, treatment or even awareness of Lyme Disease.

Media coverage

BBC South Today uploaded a new video.
A Hampshire couple who spent 10-years and a £100,000 diagnosing their daughter's serious illness say more must be done to counter Lyme Disease. Kellie Maher now needs wheelchairs and mobility scooters to get around after the NHS failed to spot the illness. The condition is spread by ticks found in the New Forest, Wiltshire and Berkshire. Today, patients from the south were in Westminster to demand better testing, and the Public Health Laboratories at Porton Down near Salisbury confirmed they are now looking at that. Our health correspondent David Fenton reports.
The above video will not be available shortly so saved on You tube 

Denise's Presentation:
Peter's Presentation (no video):
as html with video (and supplementary material to be added later):

A powerpoint presentation player is needed if you don't have it installed on your computer/device (except for the html version). A player can be downloaded from the Microsoft website.

Post of Denise presentation

Dr Armin Schwarzbach slides click  - Here

Dr Schwarzbach recently published - Morphological and biochemical features of Borrelia burgdorferi pleomorphic forms 


  1. Thank you Joanne for taking the time and trouble you took to make these notes available to all those who could not be there at the meeting.

  2. Thankyou so much for taking notes from this important meeting of some great minds, come together to share knowledge about this terrible devastating illness. It is heartening to know ( from a sufferer here in Australia) that there are people going out to bat (against the odds) for us. bless you all

  3. Great report! Thanks a lot for doing the job. Do you possibly know more about this study "Spinal Tap - in one study only 1 in 27 patients with proven Lyme Disease had positive spinal tap " that Dr. Schwarzbach referred to?

    1. I am about to post link to Dr Schwarzbach slides and note the one regarding spinal tap comes from a slide Of Dr Cameron - looking on Google Dr Cameron appears to quote it on this paper http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1626453/

      from which it appears to come from this study http://www.ncbi.nlm.nih.gov/pubmed/2172819
      However I haven't the full details of that study.

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