Wednesday, 5 August 2009


As the evidence is presented sighting research after research articles to the IDSA(Infectious Diseases Society of America) Lyme Disease Review Panel, it is clear that it is overwhelmingly supporting what ILADS (International Lyme and Associated Diseases) says. ILADS say that the blood tests are unreliable and for some patients long term antibiotics and repeat courses of antibiotics are sometimes necessary.
Much of this information and research has been available for many years and some of us suffering Chronic Lyme Disease have been aware of the overwhelming amount of research that supports ILADS and shows IDSA guidelines to be inadequate.
Our Health Agencies have chosen to ignore representations made to them over many years and instead follow blindly IDSA 2006 guidelines this has caused a World Wide medical scandal on a huge scale leaving patients to continue with chronic pain and ill health and be refused treatments that can and do help them.
It is not acceptable that the 'experts' advised our HPA in UK that IDSA guidelines were authoritative when so much evidence and research has been presented to them over many years which showed serious flaws with current NHS tests and treatment protocols.
Approximately 350,000 people in USA will have been exposed to Lyme Disease in USA whilst the IDSA has been preparing to review their Guidelines since May 2008.
In UK using HPA figures 8000 (10x confirmed tests according to Ho Yen of HPA in Scotland and CDC) new cases in the last year. Because of IDSA 2006 Guidelines these people are unlikely to have been adequately treated and may go on to suffer chronic ill health.

No one knows the impact on many other health conditions as patients are generally not assessed to see if their chronic ill health could have been caused by a tick bite (the smallest tick being the size of a poppy seed so easily missed) possibly many years earlier.

The full presentations are available on IDSA website where the video presentation is also available.


  1. Joanne, it is this is the 'same story, different day' kind of thing. In general, our health care system in this country is awful and it can only get worse unless we steer the government to do something- I'll be sure to go and watch that video. Thanks for posting it!

  2. I had no idea it was this widespread. It's awful how often doctors miss the diagnosis. Thanks for sharing this information and getting the word out. -Jackie

  3. Forgive me, I'm not wearing my glasses....but oh my god. Unfortunately I'm not surprised, our health service sucks. Keep fightinng. What about setting up a petition on the number 10 downing street website?

    Hugs x

  4. The numbers are mind boggling aren't they? Especialy when you think that this is the situation in every country around the world where ticks can survive and multiply, and that these areas are growing thanks to climate change!
    Too bad that there are people more concerned about "loosing face" by admitting they could have been wrong , than they are about getting people the help they need!
    Thank heavens there are a few brave doctors and care givers who are willing to go the extra mile and risk persecution so that they can help us.

  5. Joanne it is so great that you are informing everyone about this disease. It's much more serious than I ever thought before. In fact I was telling my hubby just yesterday about you and the different symptoms - I really never knew that there were so many.
    Keep up the good informative work.

  6. Hi Joanne, it is scandalous. Can I ask your opinion though, do you think the socialized medicine of the UK has influenced these decisions in order to save cost? The US is in the midst of a giant battle to offer government backed health care, with hot tempers on both sides of the issue. The need to offer health care to those who cannot afford insurance is dire, but no one seems to be able to agree on what to do about it. They fear being only a number, as some believe is the case in the UK and Canada. What are your thoughts about that? Delete this if you think it too controversial, cheeky or what have you. I don't wish to offend anyone.

  7. Frances
    All very good and valid points.
    First in simple terms I think the IDSA cabal only 12 +2 from Europe controlled the situation on lyme going back to before it was known to be a bacteriological infection.
    As science has developed they have dug in deep receiving money for research and having patents on Vacine production plus paid by insurance to give their opinion only short course of antibiotics necessarry and no positive test not Lyme.
    This is why Att Gen Blumenthall took his legal action against them as they did not declare their interests and should not have been eligible to write the guidelines.
    Over years they cherry picked their science to suit their opinion this is highlighted in the recent review available at the link above into IDSA website.
    Steven Phillips presentation is staggerring as he sights 83 research articles that prove seronegativity and persistent infection inspite of short courses of antibiotics. The best bit is Steere and co the authors of the contested 2006 guidelines were co authors on 18 occassions to some of these articles. They had themselves previously proved seronegativity and persistence. When Steere was recalled at the end to have opportunity to respond he said that was then, I have changed my opinion. Opinion being the crux of the problem, too much was based on opinion and not sound science or even practical experience because although persistent symptoms after Lyme is well documented they could not accept that it could be as a result of persistent infection.

    I will continue as a seperate comment due to length.

  8. 2nd part
    Pam Weintraube's articles on links top right are well worth a read as is the documentary Under our Skin worth looking at.
    But for anyone with time the IDSA review is fascinating.
    Now in UK our 'Expert' contributed to articles with IDSA cabal and has for years followed their doctrine she has built her career on this and goes to great lengths advising doctors to withdraw antibiotics after a short course or even denying them. I am told she also works hard on discrediting doctors who dare to treat privately following ILADS, not quite as bad as in USA where doctors have had their liscences withdrawn and often it is insurance who are behind the cases.
    So I do not believe HPA deliberately refuses treatment for ulterior motives just that they are told we are all misguided from reading too much on the internet etc. Again much about this in one of ILADS presentations mind boggling what people are told about their on going symptoms after short treatment.
    Actually faced with a growing population with chronic illness of unknown cause even if only a small percentage are found to have lyme it could have significant savings in health care costs. Again see links on top right re J. Miklossy and Alzheimer's link. Or Autism link or MS link.
    Dr Cameron in his presentation touched on cost to the Economy with so many chroniclly ill patients. Cost of treatment on oral antibiotics is not much in comparison although the most ill may need IV antibiotics which are more costly but if it can and does restore people back to full function sometimes from being bed ridden or in wheel chairs.
    Now as to USA Health I have only vaguely heard what's going on but I believe the debacle over lyme will and does highlight many of the problems with a broken Health Care system. In UK we have our own set of problems mainly not enough funding.
    The IDSA is a prestigous body held in high esteem throughout the World and Doctors/Consultants do not like to admit they could have been wrong so even now when the science is clear for all to see it may still be that those responsible for reviewing these guidelines hold back. If they were to admit as they should that a mistake has been made (being kind) then all hell will let loose. In the States where people are more likely to try sueing doctors for denying them treatment that could have prevented years of pain misery and chronic illness as well as death for some.
    Now this all sounds rather unpaletable but anyone can read or watch the presentations on IDSA website and check the links top left of my blog. In fact I would recommend following up because most of us will have friends or family with symptoms that will never have been assessed to see if they could be as a result of Lyme. However on a more positive note many people get bitten by ticks that are not infected and some people get infected and do not appear to have symptoms.
    So Frances I hope that answers your query and thank you for the opportunity to expand on this subject.

  9. Just a small but significant comment.
    Patients are travelling and flying not just inter State but from continent to continent in order to find doctors who are prepared to treat them, just ordinary people who have lost their livestyles and often livlihoods to this illness.
    Many improve on antibiotics and like me know that on, symptoms improve and off they deteriorate, yes even now I am still on antibiotics. Who in hell wants to pop pills for fun or want's to spend money travelling to doctors around the World.
    Such a waste of lives and worst of all such a tragedy for our children such as Lewis Jeynes on my blog role.

  10. Joanne, Thank you for keeping us informed...My son pulled a tick off of his leg and noticed the bull's eye rash and promptly sought medical treatment. He was given a short course of antibiotics that I hope worked! He's a grownup and i can't hound him to get more testing! Gail

  11. Gail If he develops any symptoms of ill health then suggest he consider Lyme as a possible cause and read ILADS guidelines and discuss with Doctor.( links on top right of my blog)
    Not all ticks are infected but if you have a bulls eye rash that is the hall mark for lyme and so he has been infected.( Not everyone has a bull's eye rash though) Some people are infected but their immune system is able to keep it under control and so do not have symptoms. Others can go many years and then something triggers the infection to get out of control. So even many years later all health problems should be assessed to see if it could be lyme.

  12. This is such important information. I am glad that I read it here. You have me thinking, in fact my head is swimming. Thanks for this..

  13. I need to correct myself Steven Phillips presented 25 not 83 articles I had counted the number listed at the bottom of each slide/page.

  14. Hi Joanne, thank you for visiting my blog & for taking the time to comment. I am now a follower & havelinked you to my blog. Can't wait to show my mum the lovely pictures of your garden she'll be sooo jealous!!

    Thank you for the links & info on lyme. I've had a quick read & will look into it further. I am all for looking into different things if only to cross them off my list of's not that!!

    I had to laugh out loud when I read the additional symptoms for lyme are low magnesium & B12 because I have only just found out I am low on both through seeing the nutritionist.

    I have a fairly good doctor at the moment so I am going to collect some info & go bombard him at some point.
    Hope to keep in contact
    Helen x

  15. Hi Helen
    I am impressed that you are being open minded and looking into this as a possibility.
    I look forward to hearing more from you and hope your mum enjoys the garden.
    My husband keeps nagging me to get back to posting about the garden but I have been busy catching up from a fortnight away, I can't believe how the weeds have grown.

  16. Dr V Lopez from Kingston Jamaica has just signed my guest book and this was the coment.
    'I support ILAD's cases against those presented by IDSA at that review on July 30, 2009'

    Thank you Dr Lopez for signing my guest book it just shows how many parts of the World are affected.

    Thank you for all the work you do following ILADS guidelines but for such work I would not be pain free and able to enjoy my garden and life again.