LOOKING AT LYME DISEASE - MSIDS: December 2012

Sunday, 2 December 2012

AUTISM - LYME DISEASE - ANTIBIOTICS

At the 2012 ILADS conference Mason Kuhn did a most excellent presentation

Scientific Support for the Effectiveness of Treating Children Comorbid with Lyme Disease and Autism Spectrum Disorder

Mason Kuhn, MS & Robert C. Bransfield, MD

A preview and his slide show can be seen on the ILADS website here a further livestream event will be held for Europe on Saturday 8th December and 9th December details here

Mason's wife has started a blog of their son's journey - Our Lyme Autism Journey here with links to the published research from her husband Mason Kuhn and Dr Bransfield.

My simple summary of his presentation

Child A normal until 18 months

loss of all vocabulary, hand flapping - diagnosed with Autism

about a year later Mother with CFS diagnosis of many years gets diagnosed with Lyme Disease - Child A also gets diagnosed with Lyme Disease ( Dr Alan MacDonald has done studies and found Lyme Disease (Borrelia) in aborted fetus and also umbilical chord)

Amoxycillin antibiotics given to Child A within 10 days vocabulary returned and hand flapping ceased - other antibiotics were given later.

Someone in the audience asked the question about vaccination - I think the answer was that it was after his MMR vaccine that his Autism began.

My comments

There is quite a high incidents of mothers with CFS who have children with Autism.

Samuel Shor has published research about cases of CFS who actually have Lyme Disease - he also presents at ILADS conference on his CFS/Lyme research but there is a post on this blog to another presentation from Samuel Shor here

It is recognised that Lyme Disease can remain in our system for many years and then something can affect our immune system and act as a trigger so the patient becomes ill.

Testing for Lyme Disease is problematic

The true incidents of Lyme disease in the population is still not known - here in the UK several research papers suggest that it is likely far more than thought - some of these papers are mentioned on this blog. Health Protection Agency (HPA) recognise the true incidents is greater than those with positive serology and some experts suggest it could be 10x the numbers HPA collect.

I have posted previously about Treating Autism with antibiotics a study in France here

Prof Montagnier is taking an interest in this field earlier posts here and here

Dr Jones US has treated many children over many years with Lyme Induced Autism here

Dr Bhakta a Dan practitioner is also finding children with Autism respond to antibiotics here

Saturday, 1 December 2012

IS LYME DISEASE IN YOUR AREA?

The first case of Lyme Disease that I heard about recorded in the Guildford Surrey area was in 2007, since which time there have been many more cases nearly 30 that I have got to know and no doubt many more that I won't have heard about and yet there is little effort to warn the general public or advise our clinicians.

This recent news hopefully will help eventually translate into action to raise awareness among clinicians and the public.

'According to Marm Kilpatrick, who studies the ecology of infectious diseases at the University of California, Santa Cruz, a broad range of human activities can affect the spread of zoonotic diseases. In an article in the December 1 issue of the British medical journal Lancet, Kilpatrick and coauthor Sarah Randolph of the University of Oxford describe how widespread land-use change, globalization of trade and travel, and social upheaval are driving the emergence of zoonotic vector-borne diseases around the world. The article is part of a special series of papers focused on emerging zoonotic diseases.'

'The incidence of any vector-borne disease involves a complex interplay of multiple factors affecting animal hosts, vectors, and people. Kilpatrick and Randolph emphasize that control of these diseases requires combined efforts by clinicians and public health officials to treat patients, promote behavior likely to minimize the risk of infection, and advise on efforts to reverse the ecological drivers of transmission through vector control, urban planning, and ecological restoration.'

Scienec Codex here

Lancet here

Join the discussion on Lymenet forum here

Lyme Life written in 2009

I started suffering with arthritis in mainly my large joints especially my knees 6 years ago. The symptoms varied and I remember saying that every joint was affected except my elbows to one doctor. I was told it would be hormonal and to take the usual supplements cod liver oil or glucosamine ( I would certainly recommend buying shares in the companies producing these supplements) They had no noticeable affect.

All my symptoms deteriorated significantly over a few weeks,4 years ago. Hips shoulders and knees being the worst and I started with muscle weakness in upper arms and upper legs. I had difficulty standing and walking across a room. I was unable to walk upstairs and my husband was making plans to convert to a downstairs bedroom. I had seen 5 doctors and 3 Rheumatologists and put on steroids for Poly Myalgia Rheumatica diagnosis. I had been diagnosed with Fibromyalgia and ME/CFS.

I have X rays and scans showing signs of osteoarthritis and Rheumatoid arthritis. ( later note.- the X rays done some years into treatment showed my hands completely normal no signs of inflammation or RA confirming how they felt - normal) I have been retired early from the Civil Service having lost my job not to mention my earning potential. My illness seemed to progress through my body not affecting the same joints left to right at the same time. I had bursitis in left hip, right hip, left elbow. I had synovial thickening in both wrists. At that time I could not lift and hold a magazine so lifting a kettle I could only do if a third full and with two hands. Each joint in my hands fingers feet and toes were affected. I had swallowing difficulties and many other symptoms. None of this describes the endless and awful pain whenever I moved or the tiredness but inability to get quality sleep.

Two years ago my GP gave me Amoxicilin for a sinus/throat/chest infection. All my arthritis symptoms improved. The course ended the symptoms deteriorated I started a second course the symptoms improved. The improvement was more significant than when I had started taking steroids. This led my GP to suspect Lyme Disease. I laughed because we do not travel abroad but she said they had had other cases in the surgery in the early stages of tick bite and Erythma Migrans rash. She said but you have not had a bite. I said oh yes I have I had two on my ankles with rashes, March 05 this was confirmed on her computer when I had seen a locum doctor. My worst symptoms were waking up feeling rigid and having to painfully flex every joint in my body before struggling to get up. The only other time I had experienced this was in May 2003 during a flu like illness like no other I had ever experienced. At that time I had a bite and similar rash on my right foot which lasted like the other rashes about four weeks. I had also consulted the surgery and it was dismissed as a virus. I walked our dog daily in the woods adjacent to our house where the deer roam, prime tick area. Thus started my very lengthy search about Lyme Disease leading me through Lyme Disease Action to a doctor who specialises in this illness. He confirmed my GP's suspicions. I never had a positive blood test but then they are antigen tests and there is much research that shows they are unreliable. In my case the year of steroids and many weeks antibiotics could have affected the results. So with a clinical diagnosis and following ILADS International Lyme and Associated Disease Society guidelines I continued on antibiotics for two years. Both my doctors continued to treat me despite of Health Protection Agency advising against long term antibiotics. I am now nearly 100% recovered I have no pain or muscle weakness. I can walk upstairs something I could not do for three and a half years. I can garden do house work and live a normal life. I still need to pace myself and with only a few months to 60 will not be looking to return to work. Life is such a joy. Sadly there is much controversy about Lyme Disease and doctors in UK are taught that it is so rare. Well where I live in Guildford I have been in contact with a dozen other people with it so perhaps not so rare as HPA would like us to believe. I am in touch with nearly 2000 other patients through a chat line Eurolyme most had been misdiagnosed with several other illnesses. Look at UK charity Lyme Disease Action if you want to read more about this illness. There are many MP's taking an interest in the problems surrounding diagnosis and treatment see above charity links into a recent meeting at the House of Commons.

Thank goodness there are some thinking doctors around who have courageously treated me against opposition and I have made such a miraculous recovery albeit rather a lengthy one. One day there will be many more people who are helped with their chronic illnesses when IDSA starts taking note of what our courageous LLMD’s are doing following ILADS Guidelines.

ME/CFS, Fibromyalgia, Poly Myalgia Rheumatica, Arthritis, Bell’s Palsy, MS,MN, ALS, Parkinson’s, Alzheimer’s, Heart Block, Stroke, Psychiatric, gastric problems the list is endless. Not all suffering from Lyme Borrelia but how many are even properly assessed for it.

UPDATE

UPDATE 10 January 2012