The LivLyme Foundation Summit 2018

by Jacqui van Teulingen

Upon the invitation of the LivLyme Foundation, and on behalf of the LDAA, I had the opportunity to attend the LivLyme Summit this week in Denver, Colorado. After super dosing Vitamin C, Zinc and Elderberry, I boarded my flight and spent 24 hours travelling across the other side of the globe to  meet Olivia Goodreau, the young lady who established the LivLyme Foundation, who are dedicated to curing Lyme disease in children. 

I felt extremely privileged to meet many of the people whose published works I have followed for many years. Of note were Dr Richard Horowitz, Marianne Middleveen, Dr Eva Sapi, Dr Shah from IGeneX, and many others working in governments and doing incredible research.

I met with other Lyme groups and Lyme patients whose stories are all very similar to ours in Australia. 

And I talked with many other Mums and Dads whose children have Lyme disease. It seems to me there is a growing movement of parents across the world who are fed up with the continual denial of illness in their very sick children. So I was encouraged by the possibilities of joining together with other organisations, other parents, to try to end the suffering of our kids. 

There was an amazing line up of speakers at the Summit, who were all there at the invitation of Olivia. Olivia’s message is that she does not want to see other children travel the same unnecessary path, if they could be educated to prevent a tick bite in the first place. 

The Summit speakers presented a diverse range of topics for discussion from research and diagnostics, to evidence of persister cells causing post treatment Lyme disease syndrome, the complexity of legislation, strategy and policy, the challenges in treatments, the selection of efficient drugs and case studies of paediatric patients. 

Some speakers presented information that is, as yet, unpublished data and very relevant for us in Australia. 

Over the coming weeks, as I balance my spoons, I will write a series of blog posts on the primary discussion topics in an effort to keep you abreast of the latest thinking, research and progress in Lyme disease in the USA, which as we know affects us all. 

Stay tuned.