Notes from the Calling Time on Lyme Conference 2019

On Saturday 16th November, the Lyme Disease Clinic in London brought together a number of world experts in the field of tick-borne diseases to present a conference on the latest in research, treatment and therapy of Lyme disease.

Their aim was to bring together medical professionals, patients, Lyme organisations and charities, in order to pool knowledge, start conversations, and raise awareness of the developments in the field of research and treatment.

We know that many who would have liked to attend were unable to, so we have put together a brief summary of the speaker sessions below. We hope you find these useful:

PLEASE NOTE: This is an impartial and brief transcript of the sessions that were given. Caudwell LymeCo does not have a position on the information given, any conflict of interest, and neither are we able to endorse any of the clinics, speakers or scientists.

Opening Remarks – Dr Joshua Berkowitz

Founder & Medical Director of Lyme Disease Clinic UK, Dr Joshua Berkowitz opened the event with an address to the attendees, thanking them for coming, giving a brief introduction to the day, and saying to those who are suffering with Lyme; ‘We encourage you that there will be an end to this disease‘.

Dr Katerina Jenkins – Director and Co-founder of TBD-Diagnostics GmbH; Director and Scientific Consultant at VJ Scientific Ltd

Dr Jenkins presented on how the current testing for Lyme disease works, and what work is currently being done to improve diagnostics.

She spoke of how research shows that Lyme bacteria doubles slowly – this is reflected in the amount of time it takes to develop an antibody response to the infection (normally around 6 weeks), and is the reason that the current tests sometimes come back with a false negative if the blood sample is taken too early.

Lyme bacteria doesn’t react well to oxygen, which can make it difficult to study. It continuously changes its protein make up – its genome – so that the immune system struggles to find it, and rid the body of it.

She and her team are currently conducting research into using DNA techniques to detect the pathogen directly, rather than relying on a antibody response test, as the current diagnostic tests do.

She says that these techniques are relevant to diagnostics because there is a are lot of missing information on genetic makeup of borrelia. It’s thought that non-human biomarkers are easier to detect, therefore their testing focuses on developing methods of looking directly for the pathogen via the DNA or chemical messaging from the bacteria, within the body.

Dr Carsten Nicolaus, Medical Director & Founder, BCA Clinic

Dr Nicolaus spoke in two sessions during the day.

In his first session he discussed diagnostics and treatment protocols for Lyme disease. He spoke of how they class Late Stage Lyme as a patient having symptoms for 6 months or more, and that in up to 10% of patients they see, arthritic symptoms can persist for years after treatment for the infection.

He also discussed how the ACA (Acrodermatitis chronica atrophicans) rash is the only definitive physical symptom or chronic Lyme disease.

He went on to state that the standard ELISA tests for Lyme disease fail to give an accurate result in 50% of cases and that not all species of borrelia are included in the testing. He also claimed that in the patients they see, each has around 4 to 5 co-infections alongside Lyme, and that this should be considered in diagnostic and treatment strategies. There is no ‘one size fits all’ when it comes to treatment protocols, and he talked of how they design an integrative approach and optimal protocol for each patient, which includes different types of antibiotics alongside diet, supplement and lifestyles changes

Dr Nicolaus also spoke of how in eastern Europe, they’ve seen many Lyme patients infected with worms, although no UK patient has been seen with this yet.

He went on to discuss the current trials and treatment of Lyme disease with disulfiram, which the clinic is using for some of its patients. The drug was originally intended for use in alcoholics to reduce their chance of relapse, but has also been used to treat scabies. It was found in recent studies to be effective in treating persistent borreliosis and babesiosis in some patients.

It’s being termed as a new wonder drug for those with chronic Lyme, especially in times of concerns around antibiotic resistance. Dr Nicolaus did discuss the side effects which can include liver failure and psychosis. He also discussed how the optimal dose and treatment length is still unknown, but some are trialling it at three months. He warned of an extreme herxheimer reaction for some on the drug, saying that this should not be pushed through – some people need to build up tolerance, or move to a lower dose.

It should be noted that treatment with disulfiram is still experimental, and that the studies taking place over in the U.S are ongoing.

His second session centred around Lyme disease in children and pregnancy. He claims that there is around an 80% chance of transmission for those who are infected in pregnancy, and that those found with a chronic infection during pregnancy should be treated immediately.

He spoke of how studies had found all three species of borrelia bacteria could be transmitted during pregnancy, and that 70% of people experienced complications left untreated.

Dr Radek Klubal, Medical Director at Medical Centre Prague

Dr Radek Klubal spoke about stem cell research and treatment in tick borne diseases, giving an overview of what is already available and what can be expected in future.

Stem cells are seen as “seeds” or “eggs” that other cells can grow from.

His team are looking at embryonic stem cell therapy as effective treatment for Lyme disease, and whether the active stem cells can support antibiotic protocols to improve the immune system response.

He also spoke about gene therapy being used to treat infections, as is being used as an approach to treat the HIV infection.

Their current work on stem cells and Lyme is controlled by EU Law, but they are looking at using a [patients own stem cells to boost their own immune response without impacting their Lyme treatment protocol.

Lydia Madrigal, Nutritional and Biomedical Scientists, Make Well Nutritionals

Lydia spoke to attendees about the nutrition and supplements for Lyme disease patients.

They recommend a diet that is anti-inflammatory, easily digestible, with high nutritional content.

She talked of how the gut is the largest immune organ of the human body, and that it accounts for 80% of the immune active cells. This affects what’s called the gut-brain axis, which is the biochemical signaling that takes place between the gastrointestinal tract (GI tract) and the central nervous system, which also refer to the role of the gut flora in this process.

Essentially, there has been found to be a link between the state of the microbes in your gut and its ability to affect your neurological immune response. This can be particularly relevant to some Lyme patients, who may suffer from gastrointestinal issues.  

Lydia spoke about what their diet recommendations are, what food they would advise Lyme patients to include and avoid, and talked through their herb and supplement protocols, which can be combined with conventional medicine to treat Lyme and co-infections.

Dr Mariano Bueno, Medical Director, Biosalud Clinic, Madrid

Dr Mariano spoke of the work of his clinic in helping to diagnose and treat chronic Lyme patients.

He spke of how they use specific diagnostuc techniques and a personalised treatment approach that takes in all aspects of the patient;’s symptoms, determining which tests they need and using a wide range of treatment approaches.

He stated that the “microbe is nothing and the terrain is everything”.

He also discussed the role of epigenetics and how they change the gene expression of the infection in the host, with a detailed list of the tests they include and issues they look for.

Dr Bueno also shared a video animation that was well received by the audience, featuring fictional character, Professor Lymevskey.

It’s an educational video aimed at young schoolchildren, to tell them of the risks of the disease and how to avoid tick bites.

For more information on the speakers and their sessions, you may wish to contact the London Lyme Disease Clinic directly.