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Posted Jul 09 2010 1:05pm

In the Star newspaper. here

Mum hitting the road for her son's helpers
Published Date: 07 July 2010

DONCASTER mum Samantha Tolmie is strapping on her running shoes for a charity which has been helping her disabled son.
Little Lewis Jeynes, aged six, was thought to have a rare illness known as Lyme disease, a rare but treatable condition transferred by ticks and mosquitos.But doctors are now not certain and he is due to have further tests later this year to find a diagnosis for the condition that transformed him from a normal toddler into a child suffering seizures and unable to move or eat.He is currently on a treatment of antibiotics which his family believe has helped his condition. He is now able to hold his head up.Samantha said: "We have seen improvements through the treatment."But over the last three years, Lewis has been receiving help from a charity called SpecialEffect, and Samantha is running the The London British 10K race on Sunday to raise money for it. She will be joined by pal Tina Wright, from Balby.

This has too be one of the worst cases of where the medical profession are overly dependent on their NHS Lyme Disease tests.

I have followed Lewis story from his website Lewis Jeynes since I first read about him in the Daily Mail 'How a cruel Disease is paralysing a little boy - and nobody knows what it is or if it will kill him.' 2nd September 2008.

Several people left comments on the newspaper on line suggesting Lewis was checked out for Lyme Disease. Reading this newspaper article and with everything I had learnt about Lyme Disease and the standard testing missing 50% of cases, it seemed important that Lewis be checked out by someone specialising in the treatment of Lyme Disease.

After many months Lewis was taken to see a specialist who ran numerous tests and Lewis was diagnosed with Lyme Disease. Sadly as those in the Lyme World know to their cost, this is when the battle for treatment really commences.

Lewis was watched by his doctors from 2005 as his symptoms developed and given excellent care no doubt. However when a Retired from the NHS consultant working privately diagnoses Lewis with Lyme Disease in May 2009 they shake their heads and ponder but can't find the time to thoroughly investigate both sides of the argument in Lyme Disease diagnosis and treatment. Lewis is passed like a ball from one consultant to the next, Neurologist, Paediatrician, Infectious disease consultants. There are many ILADS (International Lyme and Associated Diseases Society) doctors who would be only too willing to advise any other doctor seeking their guidance about Lyme Disease. They are only a phone call or an e mail away.

Instead there has been much shaking of heads and many excuses over the last year and much palliative care given by the NHS some of which is life saving and necessary for Lewis because of the serious decline in his health that he has been allowed to fall into. However the earlier post I did on Amy Proal's presentation on Don't Palliatate stimulate is perhaps something many of his and our doctors should consider.

On two occasions Lewis has been on long term antibiotics privately which has resulted in increased head control, which has declined when antibiotics ended.

So 4 years decline in Lewis health before getting a private diagnosis of Lyme Disease and a year ignoring that private diagnosis when precious time could have supported that treatment and perhaps improved Lewis's quality of life.

Anyone new to the World of Lyme Disease will think I am some what harsh on the NHS doctors who are too timid to step outside the box even when the answers stare them in the face and are too lazy to do some research into Lyme Disease which even a short time spent reading the ILADS presentations to the IDSA review would open their minds to the possibility that ILADS might have some answers for this little boy.

Some of us with Lyme and knowledge of Lyme would want to scoop Lewis up and be on the next flight to USA to find a doctor that would treat him, but sadly Lewis does not have that option. He would have difficulty flying as he is so sick and can need medical attention for the many seizures he suffers.

I was lucky both my treating doctors, that is my GP and the specialist doctor I eventually consulted with privately, were prepared to treat me, the patient, despite the negative lab test. How strange it is for me to see that some doctors are happy to do this especially as in my case the improvements in my arthritis and muscle weakness were clearly visible and yet other doctors will not take that line especially when it comes to Lyme Disease. When we are so sick, debilitated and in my case in pain surely if a course of antibiotics has clearly improved our symptoms why would doctors not continue to prescribe them, certainly we the patient with informed consent should be allowed to take them.
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