VIDEO ME/CFS

Monday 19 April 2010

VIDEO ME/CFS

I watched the above video this morning on Laurel's blog Dreams at Stake.

Those with ME/CFS often have difficulties describing their illness in a way that others can comprehend, I thought this was such an excellent video. The song was Everybody Knows about ME, thanks to Cinder Bridge. The video was put together by Phoenix rising forum.

My diagnosis of ME/CFS turned out to be Lyme Disease and on long term antibiotics I have my health and my life back. So many other blogs I read, the symptoms of ME/CFS are so similar to my own and others with Lyme Disease. An earlier post I did remarks on an e mail I received from a ME/CFS specialist who says research shows more than 30% of patients with ME/CFS actually have Lyme Disease. However some seem to have Lyme Disease and not respond well to antibiotics clearly there is something else in the cocktail of infections that needs addressing, hopefully the recent research on XMRV will help many more patients struggling with chronic ill health.

4 comments:

Anonymous20 April 2010 at 21:49
An excellent video Joanne.

Like you my daughter was misdiagnosed with ME when it was Lyme Disease. She seemed to spend half her childhood watching life pass by outside the window.

One of my abiding memories was the last day of each term. She was never at school on that day, always worn out and stuck at home.

We lived in Church Street. On the last day of term everyone went to church for the end of term service, they all filed past our house. Earlier on in her illness they would look at her through the window and some would wave. When they sent her to Coventry, she still watched them but they did not look at the windows of our house. That hurt a lot.

Music sometimes expresses how much all this hurts. When Mamma Mia played in the cinema, I found myself in floods of tears as a certain song I had never heard before played. My youngest daughter looked at me gone out. It was this song:

http://www.youtube.com/watch?v=sDL1LRcrmKI&feature=related

To me I lost half my child's years of growing up. Somehow the words in this song express the loss that I feel and that can never be put right.
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Joanne20 April 2010 at 22:08
It is the children who suffer that saddens me the most and also makes me so angry that our Health Authorities are misleading our doctors and patients into living with chronic ill health when there is treatment that can and does make patients better.

Your daughters story is a very sad one, although for her there is a happy ending, the scars will always be there for her and her family.

It is good that you do so much to raise awareness and help out other families who are trying to find their way through the mess that medicine, thanks to discredited IDSA Guidelines, is making of Lyme Disease treatment.
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Joanne21 April 2010 at 19:10
I am sorry but the comments on this post are not working properly.

Carol I had hoped to allow your comment but it seems to have been lost so I will reply to you anyway.

I am so sorry to hear you are not very well and that you are wondering if you could be suffering from Lyme disease. You will see the links on my side bar that take you to the ILADS guidelines and Burrascano guidelines do have a good read before discussing with your doctors. There is a symptom list in Burrascano Guidelines which is worth reading.

If you really do think you could have lyme and your doctor is not very knowledgeable about it then check out the local charities where you will find Lyme literate doctor that you could see.

If you want to e mail me privately my e mail is in my complete profile on the right hand column.

Because I lost your comment that means I have also lost the link back to you and so I am not sure which Carol you were to get back to.

Best wishes in finding something that helps you.
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Renee22 April 2010 at 01:18
I saw this too...glad you posted it. So much suffering for so many....
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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