The Lyme Dialogues Podcast

A Mother’s mission to find a diagnosis & treatment for her son

When her son, Matt became ill with a mystery disease, Lori Dennis searched obsessively for answers.  He saw countless Doctors and specialists for 10 years before they found suitable treatment.  Lori said that it was like being in an alternative universe all this time and she wrote a memoir, "Lyme Madness", mainly to keep her sane but also to help others about Lyme disease.

 

Dr Richard Horowitz

 

 

 

 

Dr Horowitz is an expert in treating Lyme disease - he has written 2 science books, he has specialised in treating Lyme patients for 30 years and has had great success with his protocol.  He is happy to share this protocol with other Doctors and is hoping to start a double blind randomised trial by the end of the year.  He is now working on a third science book about Lyme and has also published a funny science fiction novel "Starseed R/evolution: the Awakening" about climate change.  Dr Horowitz says Lyme is not something you have to live with your entire life.  You can get better!

Olivia Goodreau, LivLymeFoundation

Olivia Goodreau had Lyme disease at the age of 7.  At 12 she was campaigning for awareness of tick borne diseases.  She spoke to Senators in Washington and visited the White House. Wanting to help children with Lyme, she created the LivLyme Foundation to provide funds for those who couldn’t afford treatment.

She also devised two health apps.   Now 20, she is planning a career in Health and hoping for a cure for Lyme in the next ten years.

The System in the UK needs to change

The Rt.Revd. Dr Christopher Herbert, former Bishop of St. Albans, says the information on Lyme disease in the UK misleads GP's, Nurses and patients.  There should be more robust data gathering on people diagnosed with Lyme and it should be a notifiable disease.

He says “The NHS’s level of ignorance about lyme is amazingly bad….  If the data isn't collected how can the Government know the scale of the problem?…. This is the most devastating disease with long term consequences for everybody involved."

Dr Daniel Cameron

New York Lyme expert, Dr Daniel Cameron discusses his latest book AN EXPERTS' GUIDE ON NAVIGATING LYME DISEASE.'   Although Dr Cameron says "Not one size fits all," the book includes 200 case studies, describing the variety of symptoms and how the patients were treated.  It is a book which should be in all Doctors' surgeries as well as Hospitals.

Lyme Disease in Australia

Does Australia win the award for Lyme Denial?  You be the judge!

Sharon Whiteman, CEO & President of LDAA, explains the situation in Australia at the moment.

Lyme Disease & Alzheimers Disease - The Connection

Dr. Alan MacDonald, U.S. pathologist is a medical detective, having investigated Lyme Borrelia for nearly 40 years.  He was the first to prove maternal transmission of Lyme and was amazed to find that 7 out of 10 alzheimer's brains he tested revealed the live Borrelia spirochete. His groundbreaking work shows that, in some cases, alzheimers is treatable and can be cured.

Mel Clarke, World Champion archer

 

Mel Clarke   World Champion Archer  Podcast Notes

Aged 11, Mel was diagnosed with osteomyelitis, an infection in her hip bone which meant she walked with crutches and used a wheelchair for any distance.

She started archery when she was 15  and was soon competing, representing her Club and County at International level.

In 2003 she says “I was actually the first disabled archer in Europe to represent Britain on an able bodied team.  Mel was practising in New York State for a major tournament in the World championships with the GB team when she felt unwell, her heart raced, she had a pain in her chest, she was dizzy and sweaty.  She collapsed and had multiple seizures, so she was rushed to hospital in New York.

She was in intensive care on a life support machine and a ventilator, in an induced coma for 3 weeks.  Her father was told she probably wouldn’t survive 24 hours so he flew to to America to be with her while Mel was tested and “pumped full of antibiotics.”  A spinal tap found the Lyme infection.  She was diagnosed with tick borne encephalitis.

Mel says if she’d been in the UK she probably wouldn’t have survived because at least in America they knew what it was and what to look for”.

She awoke, blind and paralysed from the waist down.  There was a lot of swelling in her brain and spinal cord which caused the damage.  Her Dad had to tell her she wouldn’t be able to walk again or fire another arrow. In hospital she couldn’t feed herself or anything, her speech was badly affected and she couldn’t move so she says “it was very scary”.  

 

Mel was eventually flown home to the UK with a medical surgeon and greeted by a chief neurologist who said “What’s all this Lyme Disease then?  Which didn’t fill me with confidence.”  She was transferred to a local hospital where she spent another 5 weeks being rehabilitated.  She regained the sight in her left eye but her right eye couldn’t process the image her brain registers.

She had many challenges because of her sight and paralysis.  Just learning to steer the wheelchair down a corridor and not crash going through door ways had to be learnt.

After a month Mel’s mother thought she wasn’t progressing effectively so they decided to take her home where she did a lot of external rehab’ and people came to the house to treat her.  After 5 months Mel was able to get into a chair on her own and felt confident enough to go out in her wheelchair.  It took a good year to “get my head around everything which was another big issue.

Mel explains that she was told because of her disability she probably wouldn’t be able to compete again. And how her coach gave her a bow to practise on and people from America sent her equipment to try with her left hand and right hand.  She “worked and worked and worked’.”

2 years after the day she collapsed she competed in the Disabled World Championships in Italy, “where I actually became World Champion, so it was a massive achievement.”  She then went on to win a silver medal at the Paralympics in London in 2012 and a bronze medal at the Beijing Olympics.

Mel says that was probably bitten in Thetford Forest, Norfolk by a tiny tick which had caused the Lyme encephalitis.  Her story is one of courage and determination, overcoming physical challenges to win again.  Now retired she says that “life is better than I could ever have wished.”

Kris Newby: Author of Bitten

“America’s Chernobyl” - The Secret History of Lyme Disease and Biological Weapons.  

The mystery of 'The Swiss Agent' and the surprise discovery of 'Borrelia Burgdorferi' (Lyme Disease) by Willy Burgdorfer.

Bunny Guinness

Garden designer, author and Broadcaster, Bunny Guinness describes her experience of Lyme and the various treatments she has tried.