DOCTORS WHO TREAT OURSIDE THE BOX.

Saturday 17 April 2010

DOCTORS WHO TREAT OURSIDE THE BOX.

I have heard many good comments about the work of Dr. Sarah Myhill from patients or parents of patients with ME/CFS. Many people suffering ME/CFS and also those with Lyme Disease know only too well how difficult it is to find a doctor that listens and really tries to sort out what our problems are.

I was shocked at the treatment I had from three Rheumatologists, arrogant to a point of rudeness, dismissive of my arthritis and muscle weakness symptoms and flippant, one suggested I gave up work when I explained how I was struggling to cope even after reducing my hours. Like he would have given up his income probably 4x what I was earning at that time, so easily.

I was very sorry to hear the latest action by the GMC in investigating Dr Myhill yet again.
http://www.drmyhill.co.uk/wiki/Category:My_GMC_Hearing

I have found Dr Myhill's website very interesting and most of what I have read very informative and useful, quite a breath of fresh air in fact.
http://www.drmyhill.co.uk/wiki/Main_Page

It does seem so much like a witch hunt, hounding her because she has views a little different than the main stream in medicine. It is very worrying that doctors who treat outside the box are being hounded in this way, especially with the problems those treating Lyme Disease in the USA have had. It comes to something when States are taking the vote in order to protect their doctors from treating patients for Lyme Disease. I watched the hearing in Connecticut last year and what really struck me was the number of patients who must have suffered Chronic ill health from Lyme Disease for the situation to have got to the point of gaining the full support of their Representatives. The vote was unanimously in support of allowing Doctors to treat patients with Lyme disease freely rather than being threatened with prosecution by medical boards supported by IDSA's view of their discredited Lyme Disease Guidelines.

Dr Myhill's experiences do not bode well for the future of our precious few private Lyme Disease doctors in the UK who treat outside the box but who have success with long term antibiotics. The prospect of me being denied the only treatment that worked for me and being left struggling with chronic ill health and all that pain is rather scary.

I wish Dr Myhill well not just for her but for the future of medicine which must be allowed to evolve as new ideas and research is produced.

4 comments:

Anonymous18 April 2010 at 11:56
Well said Joanne.

What makes me really uncomfortable is that someone who goes by the pseudonym Goldacre is bragging on his blog that he is the person who has put the complaint in. He seems to find the whole matter rather amusing.

The language and tone of his blog are offensive. I came across this which seems to tell us more about Goldacre

http://www.slingshotpublications.com/dwarfs.html

You can read more about him from page 27 if you download the book.

If I were a "normal" doctor, seeing so much of my fees paid to the GMC being spent on investigating Dr Myhill (yet again), based on the complaint of someone who is so crude, I would feel deeply uneasy as there seems to be a great lack of professionalism on Goldacre's part.

Dr Myhill is a brave woman who believes in what she does. Her patients evidently feel passionately about her. My family has never seen her but have often referred to her website.

The most important thing for her patients is that she CARES. She very probably does not have all the answers, but she is kind and believes they are ill.
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Anonymous18 April 2010 at 19:34
Joanne

Unfortunately I fear with our new Healthcare Law in the U.S. we will again be in the same situation you find yourselves in in the UK..

The amount of energy spent denying the truth about Lyme and co infections could and should be better spent in finding better diagnostics and treatment...it is so shameful!
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Joanne18 April 2010 at 20:48
Anon Thank you for your comments. I had read the blog post of Goldacre and was not impressed by his comments. I followed his website for a time but found him flippant and lacking in facts with a bias which I did not agree with. I rather felt his header picture rather summed up his flippant self opinionated views.I will take time to read your link soon.

Renee Thanks for your comment, yes sadly I am inclined to agree, our Health advisers to our governments spend too much time denying Lyme and if they spent as much investigating the organism and the available research so many thousands of patients the world over would benefit. The same can be said for ME/CFS.
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Anonymous22 April 2010 at 10:19
HI Joanne,

I've read Martin Walker's book downloaded from slingshot pulicationns as referenced in a previous comment.

I wish we had a journalist like him doing some research for the Lyme side of things.

One day his knowledge and ours will meet in the middle.

I've heard that the stuff about Plum island might come out soon and already there is a court case going on now with a lab technician who has been made ill by a virus or unknown agent she was working with and the drug company are refusing to release what the agent is. It seems there is a whole world of corporate insurance and medicine which is virtually above the law, using patents as get out clauses for all of their misdemeanours.

Best wishes, anon
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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