LOOKING AT LYME DISEASE - MSIDS: LIVING WITH LYME DISEASE

Thursday, 27 October 2016

LIVING WITH LYME DISEASE - IRISH DOCUMENTARY

Published on Oct 29, 2016

This documentary was aired Tuesday October 11th 2016 on IrishTV.

It is the compelling story of people affected by Lyme disease in Ireland.

Lyme disease, also known as Lyme borreliosis, is an infectious disease caused by bacteria of the Borrelia type.

Lyme disease is a bacterial infection typically transmitted through the bite of an infected tick. It is one of the fastest growing infectious diseases in the world.

2016 Lyme Conference In May 2016, Ireland's 2nd Lyme conference brought together doctors & patients. European speakers attended & was a great success. This 18 min video captures the atmosphere perfectly (including interviews with speakers & patients). https://www.youtube.com/watch?v=iQmeg...

Living with Lyme Disease - Irish documentary team looking for backers, take a moment to watch the video, it's heart wrenching. https://youtu.be/JpYHF43ZG4I

Check out Tick Talk's survey results, now updated for 2016! http://www.ticktalkireland.org/survey...
In May (Lyme awareness month) Tick Talk volunteer Ann Maher hosted Ireland's 2nd Irish Lyme disease conference, plus talks were held in a ladies group in Galway & a school in Wicklow.

Dublin Inst of Technology student Natalia Marzec set her photographic display to the subject of Lyme disease plus a new article written by Tick Talk, has been published by MyKidsTime. https://www.mykidstime.com/for-parent...

From the Health Protection & Surveillance Centre in Dublin: We are planning to hold Lyme Awareness Week 2016 on the week beginning Monday 2nd May. As usual we will be having HSE Communications alert media outlets about Lyme Awareness Week and will be seeking interviews to raise awareness at this important time.
The Lyme subcommittee task force (on lyme prevention & surveillance) will be publishing their full report during Autumn 2016....

New single released by an Irish Lyme sufferer to help raise funds for her treatment & raise more awareness in Ireland http://elainefightslyme.com/

Read also: Councillor calls for signs highlighting dangers of Lyme disease as former Kerry footballer undergoes treatment http://www.independent.ie/irish-news/...

Read also: Kerry may erect signs amid risk of Lyme disease http://www.irishexaminer.com/ireland/...

Read also: http://kclr96fm.com/hse-blasted-lack-...

Latest news: December 1st the Matter Hospital will no longer send bloods to labs for testing for the following : Anaplasmosis, #Babesiosis, #Bartonella, Brucella, Chlamydia pneumonia, Q Fever or #Rickettsiae. The reason? Why, its budget of course! https://www.facebook.com/niccistgeorg...

Visit also: http://www.ticktalkireland.org/

See more video's and information about Lyme Disease
here on Lyme Channel: http://bit.ly/1VRWk2j

Earlier post https://lookingatlyme.blogspot.co.uk/2016/10/living-with-lyme-disease-documentary.html

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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

Thursday, 27 October 2016

LIVING WITH LYME DISEASE - IRISH DOCUMENTARY

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