Tuesday, 19 January 2010


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.

No comments:

Post a Comment