Thursday, 22 March 2012


From :-


'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 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This petition is open to everyone the World over because sadly all our Health Authorities use these outdated guidelines as their own.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 The medical textbooks are outdated every 2yrs to 3 yrs.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


  1. Subject: very sick teenager hospital Nepean Hospital Penrith 4 years testing nothing found
    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

    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.

    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
    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

    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

    1. Lina I am so sorry to hear about Sam. I am pleased you have made contact with Karl Mcmanus Foundation and hope they are in a position to advise you regarding testing and local doctors - the only one I know of in Australia treating Tick borne Diseases following similar protocols to International Lyme and Associated Diseases is Dr Mayne
      There were several features on Australian TV recently
      and I understand a number of patients have sent off to Igenex in California for testing. Many Lyme specialists throughout the World use this lab. Currently a negative test can not rule out Lyme Disease and standard testing can miss many cases.

      I would suggest you join Eurolyme where you can talk to others about similar problems one or two who also live in Australia.

      As to treatment I am not a medical trained person and so am not able to give advice. The purpose of this blog is to raise awareness and provide links and information.

      very best wishes to you in finding treatment that helps Sam.