Thursday 22 March 2012

SIGN THE LYMEDISEASE.ORG PETITION TO REMOVE OUTDATED LYME DISEASE GUIDELINES

From :-

LYMEPOLICYWONK: SIGN THE PETITION TO REMOVE THE IDSA GUIDELINES FROM THE NGC!

'Medical treatment guidelines are tremendously important in determining your treatment options. All important treatment guidelines are listed by the National Guidelines Clearinghouse (NGC), which is part of the US Department of Health and Human Services. It’s the government’s way of providing updated information about different diseases to health care professionals. NGC’s own rules require that listed guidelines be updated every 5 years. The Infectious Diseases Society of America has not revised its controversial Lyme disease guidelines for more than 5 years. Nevertheless, the NGC recently permitted the IDSA to continue listing the Lyme guidelines without updating them.'

If you haven't already signed this petition please do so.

Go to Lymedisease.org here to sign the petition.

This petition is open to everyone the World over because sadly all our Health Authorities use these outdated guidelines as their own.

In the words of Alan MacDonald MD, known for his pathology work with Borrelia, this was recently posted on Lymenet Europe here
(some of you may be aware that Dr MacDonald had to retire due to an Alzheimer's like illness but I am pleased to add that he is doing well on medication and with regular doctor visits, certainly his recent contributions to the debate about Lyme Disease on Lymenet Europe are valuable and fascinating)

'Proficiency testing is one arm of "Maintenance of Certification". That maintenance exists because the "half life" of medical ( and scientific) information is finite. Half life comes from the Decay of levels of radioactivity for an isotope. Medical half life of information means that one half of the information which was "correct" is either changed or removed or redefined in the half life interval. Years ago, it was estimated that medical information had a half life of 5 years. That interval has shortened, due to the rapid pace of entry of new information, based on new tests, drugs, and understandings of disease mechanisms. Medical half life information "decay" is now closer to 2 years.' etc--

'Now if we agree that the Medical information Half life curve is less than 5 years, and that this is the inevitable consequence of new information entering the medical arena, I pose the following Rhetorical question. Why not re-write the 2006 IDSA guidlines for an updated 2012 version? The medical textbooks are outdated every 2yrs to 3 yrs. Re-writes are necessary. We now live with the IDSA 2006 guidelines. These guidelines came up for governmental review in 2011. It was voted to extend the 2006 IDSA guidelines- WITHOUT REVISION OF A SINGLE SENTENCE for the next 5 years. This decision is at variance with what constitutes good medical practice in every specialty of medicine.

I believe in proficiency testing. I believe in Mandatory re-writes every 2-3 years. I believe in lifelong learning.

Best to you,
Alan B. MacDonald MD

2 comments:

Anonymous2 April 2012 at 01:00
Subject: very sick teenager hospital Nepean Hospital Penrith 4 years testing nothing found
Comment:
Return correspondence will be sent via post.
Lina Natoli
Unit 5, 7 Allan Avenue
Belmore NSW 2195

To Julian Gillard as a matter of Urgency

As per my email please
Would appreciate a response in due course

Need your help with a delicate matter.
My boyfriend’s grandson is very sick in the Nepean Hospital as we speak.

It all started 3 years ago when he went dirt bike riding with his brother and
father out west Lithgow out that way. He got bitten by an insect which we now
believe to be cape tee rove beetle at the age of 14 years. Since had fits at
school and needed to be taken home or would end up at hospital.

The hospital would do tests but never found anything specialist would come to
see Sam that's the grandson and could never confirm anything about Sam’s
condition. Sam advices me he has had two heart attacks stokes where loses
feeling in one leg. The hospital did say that the blood cells count was
indicating something foreign but couldn’t say where in the body was
affected. 3 Years have gone past nothing and remains resolved.

To add to his condition he has blood preside that is not treated. His stomach
has doubled in size. Bladder is not functioning. Antibiotics given nothing
worked. Sam had another seizure and is in hospital undergoing the same tests
he had three years ago. Since the grandmother lost her temper with the
hospital. Also to mention Sam advised that had a stay on his spine which now
has back pain and also advised doctors lost xrays.

If that's not bad enough have given Sam that many electric shocks to measure
nerves that if he had any more could be fatal. I find this conduct
unsatisfactory.

His almost 17 years and his life almost over what a tragedy.

He has so much living to do and is been wasted. It’s so sad. Please can
some help him get assistance to get good care and some kind of recovery?

Centre link don't even want to assist, just give him a health card. This boy
deserves a chance at life.
Sam has been paying his own expenses he doesn’t have much money. So also
there is a funding problem.

Can’t the Health system do something to help

Is there anyone out there with an interest or has some compassion for the
situation for what the parents, grandparents
Friends are going through seeing the family member slowing dying.

I think the government has a lot to answer for.
Why something can’t be done to make the situation better

Seem to spend more time on criminals they get treated better

Parents and grandparents to see him grow and make something of himself
I hope you make a difference.

Sam’s email address is. sam.famularo@hotmail.com.

Yours sincerely

Lina Natoli

Phone work 02 9282 8544 Please don’t hesitate to call if you have any questions
Additional information can be provided by Sam or his doctor

Ps the reason I am writing to you is because the parents don’t have any
idea
Whom to approach. They are just frustrated. Do you blame them

Further more have been in touch with karl mcmanus foundation
Who advised to have blood testing for infectious diease /lyme disease which
we attended to day in the city Australian Biologics testing service pty ltd
Jennie Burke Director telephone 02 9283 0807
Email jennie.burke@australianbiologics.com.au

But need to wait 6 weeks for result

What do we do in the mean time
Is there any treatment that we can start Sam on or do we have to wait

Kind Regards
Lina Natoli
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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