TAKING CONTROL

Tuesday 19 January 2010

TAKING CONTROL

Chronic illness is often treated with many misconceptions by other people and doctors.

Interestingly Dr Jemsek said that of the top 20 chronic illnesses in the USA they only know the cause of two Helicobacter Pylori a bacterial infection causing stomach ulcers and HIV a viral infection. How many patients went under the knife for a stomach ulcer unnecessarily and how many AIDS patients died before HIV was accepted?

The remaining illnesses are manged by a barrage of medications the main ones being anti inflammatories, pain killers, anti depressants and steroids all of which are doled out like smarties.

Many people I know, like me were diagnosed with ME/CFS and later found their illness to be Lyme Disease and on adequate treatment of antibiotics get their health and their lives back.

Now with the internet we have the power to investigate our chronic health and help steer our path through the minefield of information available to us and discuss options with the many doctors along the way. The more you read the more you realise that sitting back putting 100% faith in our doctors is not always going to bring us to a successful treatment and many illnesses have so many common symptoms. When do you treat as an auto immune illness and suppress the bodies inflammatory response or when do you dig deeper and find out why the immune system responds with inflammation and actually get to a cause whether viral, bacterial or otherwise?

Through Google alerts I came across this which is a perfect photograph of a Bulls Eye or Erythema Migrans rash and yet Alex Wade had the usual run around with doctors not recognising it. Alex also has had a major operation recently for Cervical Myelopathy, both conditions could be the cause of his many symptoms, although the proximity of the rashes to the Cervical Myelopathy and the fact that Cervical Myelopathy can be caused by infection makes one wonder. Good luck to Alex.

Another case that came up in Google Alerts was Ruth's diagnosis of Lyme Disease after living with a diagnosis of Rheumatoid Arthritis for years. Ruth and I have been in communication because her Arthritis symptoms are so similar to mine although I also suffered from muscle weakness. At one point I was diagnosed with Poly Myalgia Rheumatica and put on steroids (a complete no no for Lyme disease). I had X rays of hands which showed signs of Rheumatoid Arthritis now 100% recovered. I also had scans showing Osteoarthritis in hips and knees which may well still be there, but I no longer have pain or disability there.

Ruth is still in the early days of antibiotic treatment but clearly it is having a significant benefit. Ruth first started being ill at 16, such a waste of her life with so much pain, which could have been managed differently if only doctors would get informed more about Lyme Disease.

Ruth saw mention of the use of Minocycline for treatment of patients with Arthritis on Roadback forum and although I have not had chance to check this website out this is what they say on their homepage.

'You have reached a unique resource. The Road Back Foundation's (RBF) Website includes information and support regarding an important and often overlooked treatment option for rheumatic and related diseases. The particular focus here is antibiotic therapy, proven safe and effective in NIH-sponsored clinical trials. Thousands of patients have reported successfully using antibiotics for conditions including rheumatoid arthritis, scleroderma, juvenile rheumatoid arthritis, lupus, dermatomyositis, ankylosing spondylitis, Lyme disease, Reiter's syndrome, mixed connective tissue disease, fibromyalgia and psoriatic arthritis. Results of an international survey of patients documented dramatic results including relief of pain, the lessening of swollen joints and an overall successful return of quality of life.'

Now I know Doctors will say that we shouldn't believe all we read on the internet but Doctors are human they make mistakes, we are just one of many patients. We only have one body and we need to get as informed as we can about our health and what is available, then we need to discuss with the experts and make our decisions on what works for us. We do not have to listen to just one opinion. Knowledge is power.

Good luck to all those seeking the cause of their chronic ill health.

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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

LOOKING AT LYME DISEASE - MSIDS

Tuesday 19 January 2010

TAKING CONTROL

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