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Joanne Drayson
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I came across your post with a Google search for Scleroderma and antibiotic treatment to answer a question I had been asked. My initial reaction was how good to see an open minded Rheumatologists after the 3 rather arrogant, to the point of rudeness, I had the misfortune to consult with. Before I was diagnosed with Lyme disease. I was interested in your comments about Road Back an organisation I found some months ago after my arthritis and muscle weakness was nearly 100% recovered after long term antibiotics. My GP suspected Lyme Disease when my symptoms made such a significant improvement on a chance course of antibiotics for a chest infection. Eventually I found a private specialist in this field who supported my GP's suspicions. Here in the UK there are a growing number of doctors and consultants ( several I am in touch with)that are following ILADS approach in favour of HPA/IDSA, some because of their or their family members suffering with Lyme Disease. I would be interested in your take on Lyme Disease and the controversy that surrounds diagnosis and treatment. Not just the establishments view but yours after doing lots of reading on both sides of the argument. In fact I commend the book Ending Denial available through Scleroderma can be a symptom of Lyme Disease and is mentioned in this book. I can't prove Lyme Disease or any other infection was the cause of my years of painful and debilitating illness but I and my two treating doctors believe that antibiotics long term are what has got me to my present good health. I was also interested to hear your scepticism over XMRV retro virus and will be interested to read your next post on the matter when the Alter research is finally released possibly next month. I am looking forward to following your blog.
Toggle Commented Aug 18, 2010 on Minocycline for Scleroderma at Rheumination
The situation you are in Alex is like the one so many Lyme disease patients find themselves in. Controversy over Lyme Disease is something we all find difficult to understand. For the benefit of others who may visit your blog:- The Health Protection Agency say that IDSA guidelines are authoritative. However those guidelines are currently under review. An opposing Guideline is those by the International Lyme and Associated Diseases Society ILADS and can be found at Also on their website can be found the presentations to the review panel. Recent news found through the CALDA website. This shows correspondence from Att General Blumenthal to the IDSA. The IDSA have not conformed to the legal agreement on voting which once again would skew the guidelines. This in turn would affect diagnosis and treatment of thousands of people the World over as it is doing currently. Also on Calda is a copy of the letter sent from Dr Bransfield the president of ILADS to the IDSA requesting they remove barriers to the process. Most doctors and consultants in the UK depend on advice given by HPA because Lyme is considered rare in the UK and is therefore not a part of their training. Anyone with Lyme Disease or the possibility of having Lyme Disease would do well to get informed with what is going on and then they are in a better position to discuss their treatment options with their doctors. UK charity website is a good place to start.
Toggle Commented Feb 6, 2010 on In the Land of Lyme at Surf Nation
What your Neurologist won't know!! Please read ILADS website Under treatment guidelines the Burrascano ones are the most detailed. UK charity website has much information needed to be looked at. HPA follow IDSA discredited Guidelines. Most Lyme Doctors would treat at a much higher dose and for much longer duration. The microbiologist at the Lyme Reference Unit advised my GP to stop antibiotics, at that point I still had many disabling symptoms fortunately for me my GP had read Burrascano guidelines and seen my response and continued to treat I am now 100% recovered. 'The controversy over this illness is a medical disgrace' said one consultant to me, now that her family member is fully recovered from being in a wheel chair, because he was treated in USA using ILADS guidelines. There is so much to know about Lyme Disease that consultants don't take the time to get to know. The presentations to IDSA review hearing held on July 30th 2009 details on ILADS and IDSA website show that Lyme Disease is a formidable organism. Research shows it to be complex on a par with TB and Leprosy and as a spyrochetal illness similar but more complex than syphillis it can penetrate every organ and system in the body causing chronic debilitating and even life threatening illness. On adequate and appropriate treatment we can and do get better and get our health and our lives back.
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Jan 17, 2010