AONM Lifting the Veil III Conference

 

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On 15th May 2016, the Academy of Nutritional Medicine hosted the third event in their ‘Lifting the Veil’ series of conferences which look into important questions surrounding chronic diseases. It was an extremely well attended event with international doctors and scientists delivering extremely thought-provoking and enlightening presentations. It was inspiring to see so many practitioners and patients coming together under one roof to share expert knowledge and hope for the future.

Lyme Disease UK was very kindly offered a table in the foyer at the event where we handed out leaflets, keyrings and badges to increase awareness and displayed our banner. We also hosted the Lyme disease challenge and encouraged people to ‘take a bite out of Lyme disease’ by sucking on a lime and posing for photographs. We are very grateful to everyone who contributed to our fundraiser which enabled us to purchase the LDUK awareness materials and it was wonderful to see so many group members in person at the conference. Thank you to the AONM for having us and congratulations on organising another fascinating conference. For the AONM round up, please click here.

Lyme Disease UK admins at the LDUK stand

 

Here is a summary of the presentations provided by LDUK group member S.H.:

Dr Judy Mikovits – The Terrain IS everything! Lessons learned  from four decades of Immune therapy

Borrelia is gram negative. Mast cells are usually inappropriately activated and antihistamines can be helpful. Babies are born immune suppressed with Th2 dominance until the age of 2-3 were they shift towards Th1, so infants cannot mount an immune response to the early virus vaccines. The lymphatic system is now believed to have a pumping system in the brain. When it comes to immune therapy, there is no magic bullet and treatment needs to be individualised. The brain and the immune system cannot be separated.

Dr Mikovits’ presentation slides can be found here.

Dr Armin Schwarzbach – Chronic Infections – Transmission within Families and the Consequences

Infection doesn’t always mean disease. The house fly is known to transmit h-pylori and salmonella and can infect people by landing on food. Fleas can carry Rickettsia and Yersinia. Insects and flies are ‘dirty needles.’ Animals bringing ticks inside is a big cause of Lyme disease in humans. Mosquitoes have also been shown to carry Borrelia. Borrelia has been passed in blood transfusions in mice, so would seem possible in humans. Sexual transmission looks possible with small studies showing the same strain in sexual partners, however bigger evidence based studies are needed. Transplacental transmission is possible but the studies have not been big enough to be mentioned in any guidelines yet. In dogs, 80% of the mothers passed Lyme to at least one newborn. Bartonella is found in 40% of ticks in Germany and Babesia blood transfusion can be fatal. Rickettsia can be dangerous for the heart and cause mycocarditis. There is also a link between Q fever and lymphoma. People develop a lot of opportunistic infections when the immune system is weak and cold sores (herpes) are a sign of a weakened immune system.

Dr Schwarzbach’s presentation slides can be found here.

 

Dr Marjo Valonen- Case Reports – Herbal and Nutritional Treatment Protocols in Lyme and  Co-Infections

MD in a private clinic in Finland treating people with MSIDS and a survivor of Lyme disease herself. She will often use double or triple doses of Cowden protocol products and she often refines existing protocols and incorporates functional medicine, traditional Chinese medicine, nutrition and herbs. Blebs can communicate with each other, even when it comes to issues surrounding resistance.  Stealth infections can mutate gene structure based on the host’s immune system. Borrelia suppresses detoxification and can disrupt every living organ. She recommends vitamin C in only natural wholefood form or in liposmal form. People can get negative or low EliSpot results when they are immunosuppressed as the EliSpot is measuring the T-cell battle against Borrelia. So, poor immune system function can result in low T-cell response. Killing the bugs often isn’t enough as everything must be rebuilt following these infections. 5% patients have a dramatic improvement in symptoms just with dietary changes and correct nutritional supplementation.

 

Professor Malcolm Hooper – 3 T(ear)s for PACE: Travesty of Science, Tragedy for Patients, Tantamount to Fraud. The Fall of the House built on Sand!

PACE designed to validate CBT and GET as treatment for ME/CFS. No objective measurement and trial entry requirement was manipulated – the goal posts kept moving.
ME/CFS, fibromyalgia, and Multiple Chemical Sensitivity are other labels for  MUS (medically unexplained symptoms) Words of ignorance and government lies.
25-30% Gulf War veterans are sick – exposed to pesticides, nerve gas etc.
NICE guidelines on ME are unfit for purpose.

Professor Hooper’s presentation slides can be found here.

Dr Joseph Jemsek – Applying Common Sense and Lessons Learned in Lyme Borreliosis Complex

Devoted his practice to HIV until 2006. His clinic in Washington is now solely devoted to caring for patients with Lyme Borreliosis complex. Dr Jemsek says “everything I have learned…truly learned in the practice of medicine is from the patient.”
Borrelia sensu lato, is the collection of Borrelia bacteria which can cause Lyme disease.
Borrelia can effect any cell and Babesia also lives inside biofilms and not just inside cells.
Dr Jemsek has created a healthy drink for gut health which includes kefir, glutamine, coconut milk and green tea.
In Lyme Borreliosis complex, the HPA axis is severely affected and the co-infection Babesia is often the engine which drives the disease. Co-infections enable Borrelia to continue damaging the host. If you treat the co-infections, there is a much greater chance that the immune system will recover. In the brain, Lyme Borreliosis complex hits the limbic system the hardest and the brain ‘can’t think’. Lots of neuropsychiatric symptoms are caused by this illness. A study by Salazar et al found memory cells in EM rashes, suggesting that an EM rash means it’s not the first time the patient has been exposed to the organism.

Dr Jemsek’s presentation slides can be found here.

 

Dr Alan MacDonald – Chronic Borreliosis and Chronic Seronegative Lyme Disease – DNA Probes Solve a Diagnostic Conundrum

Pathologist researching Borrelia for the last 3 decades and was the first researcher to provide evidence of the cystic, granular and cell-deficient forms of the organism.
Multiple Sclerosis is parasitosis.
Borrelia endosymbionts dwell inside parasitic nematode worms which invade brain tissue, trampling neurons and leaving a trail of destruction in their wake. Endosymbionts live in harmony with their host, but cause devastation once released into the brain. In simple terms Borrelia can live inside the worm and when the worm dies, the bacteria is then released into the system.
The  Dr. Paul Duray Research Fellowship Endowment has found Borrelia endosymbionts inside parasitic nematode worms in the brain tissue of victims of diffuse cortical lewy body dementia. Researchers also detected Borrelia dosymbionts inside parasitic nematodes in the autopsy of cerebrospinal fluid of patients who suffered MS. The technology in 2016 makes it a lot easier to find worms in spinal fluid compared to 50 years ago.

Dr Alan MacDonald’s presentation is available to watch here and a DVD of the event will be released in due course.

Sarah from The School of Balance shares her takeaways from the conference below:

‘The things I noted that we can all do to help the community are:
– Don’t under estimate the power of patient groups and the influence we can have (attend the protest or send a message if you’re too unwell; write to your MP or get someone to on your behalf if you’re unable to).
– Write to the Lancet journal and ask why they haven’t retracted the flawed PACE research they published (Dr M Hopper has published his letter to them so can use that for assistance).
– Encourage those around you to volunteer to be on the GMC panels or volunteer if you are well enough. 3 out of 4 people are lay members and we can help to protect practitioners who use alternative methods.
– Don’t give up and share ideas/knowledge/support.
– Fill in the survey at www.tickplex.com
– Consider joining with other patient groups of chronic and/or multi system conditions as our voices will be stronger. The medical model is not set up to deal with these.

My key takeaway in terms of Lyme disease/healing was two fold:

-1 That we don’t tend to get ill from one tick bite. It tends to be an accumulation of infections over the years which at some point we have a final assault and it takes our immune system over the edge allowing all of the pathogens to take over. Far more of the population than we realise probably have some of these infections, but their immune system is keeping them (mainly) at bay. This is in many ways scary as they could be ‘walking time bombs’ however is also reassuring as once we reduce the pathogenic load and get our immune systems there is hope for improvement (I appreciate some people are sicker than others and this may not be an easy road nor are there any miracles, however I found it reassuring).
-2 Healing has to be multi faceted. “All of the arrows have to be pointing in the right direction”. Sleep, nutrition, stress management etc are critical. Pathogens need to be dealt with, yes, but our body needs to be protected. I was also pleased to have it reinforced that not everyone needs to rely on antibiotics to do this. Protecting and boosting our immune systems is key.’

Joanne Drayson has also provided a summary of the presentations on her blog, Looking at Lyme Disease.

 

Panel of speakers
Panel of speakers L-R Dr Valonen, Dr Jemsek, Dr Mikovits, Dr Schwarzbach, Prof Hooper