GUIDELINES BASED MAINLY ON OPINION SHOULD NOT DENY TREATMENTS

Tuesday 11 January 2011

GUIDELINES BASED MAINLY ON OPINION SHOULD NOT DENY TREATMENTS

Many Recommendations Within Practice Guidelines Not Supported by
High-Quality Evidence, Study Finds

Science Daily (Jan. 10, 2011) — More than half of the recommendations in
current practice guidelines for infectious disease specialists are based
on opinions from experts rather than on evidence from clinical trials,
according to a report in the January 10 issue of Archives of Internal
Medicine, one of the JAMA/Archives journals.

Science Daily

"As with individual research studies, providers should critically evaluate guidelines and the evidence on which they are based and how relevant recommendations are locally at their institutions and in their patients," Dr. Powers concludes. "Especially for subspecialists, guidelines may provide a starting point for searching for information, but they are not the finish line. The fact that many recommendations are based on opinion should also serve as a call to future researchers to critically evaluate and study the questions that need better answers."

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The controversy over the Infectious Diseases Society 2006 Lyme disease Guidelines are a very good case in point.

'The controversy over Lyme disease came to a head in
November 2006 when IDSA released new guidelines severely
limiting treatment options for patients with persistent Lyme
symptoms. The guidelines were so restrictive that the
Attorney General of Connecticut initiated an unprecedented
investigation into potential antitrust violations by IDSA, the
dominant infectious disease society in the United States, in
its formulation of the guidelines. The investigation found
significant conflicts of interest and suppression of data in the
guidelines development process. Raphael B Stricker, Lorraine Johnson ref here

Several of the presentations at the Review of the IDSA 2006 Guidelines contested the level of evidence used to formulate those Guidelines.

Daniel Cameron MD, MPH IDSA Hearing Presentation here

No evidence to limit most treatment
options on “not recommended” list
The 2006 IDSA panel:
• Did not cite Level 1 or II evidence
• Did not give specific reason why agent/modality on list
Panel’s conclusion: “Selected antimicrobials, drug
regimens, or other modalities not recommended for the
treatment of Lyme disease”
is NOT supported

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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 11 January 2011

GUIDELINES BASED MAINLY ON OPINION SHOULD NOT DENY TREATMENTS

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