Monday, 26 April 2010


I have been debating how to post on my blog about the IDSA review decision on the Lyme Disease Guidelines.

My initial response was disappointment in my fellow man, my next well what a surprise! I don't think. The IDSA have followed their track of denial for too long now to bow their heads and reverse their direction, what are many thousands of wrecked patients lives and misery compared with the egos of their members?

It was interesting to read what is going around on the internet, CALDA has several interesting posts. There are several comments on newspaper articles Health News

'However, the committee’s affirmation of the guidelines is seen by some to be a whitewash because, they claim, the review process was biased.

Dr. Robert Bransfield, president of the International Lyme and Associated Diseases Society, said: “How can there be such total consensus with any scientific issue? It’s beyond comprehension.”
Bransfield added, “It makes me wonder about the accuracy of the process. This is what everybody was expecting that they would do: a process that would rubber-stamp it and basically validate what was there before. It’s a concern because it does compromise the best interest of patients.”

Another critic, Dr. Raphael B. Stricker, a San Francisco physician who treats chronic Lyme disease, said that “when the panel votes eight-nothing on almost every single recommendation, that suggests that there is something wrong with the process.
“Until we get a really objective review by an objective panel that’s not all in Infectious Diseases Society of America’s pocket, you are going to get the kind of thing you see with this, and that’s a problem,” Stricker said.

Lyme Disease Association response.

Lyme Disease Action initial response was that the truth is in the detail.

Yes there are some very interesting details in the full report and many recommendations which will not be dealt with until their next review one wonders why?

The Panel said, "in clinical practice, the presence of certain classic complications of Lyme disease such as aseptic meningitis, AV nodal block, inflammatory arthritis, and cranial or peripheral neuropathies, in a patient with epidemiologic risk of Lyme disease and in whom alternative diagnoses have been excluded or are unlikely, may be sufficiently convincing as to constitute an exception to the statement in the Executive Summary."

Well I guess we could all fit into that description.

Another extract from the final report emphasises that they are only guidelines so why then are they used to deny so many treatment?

“It is important to realize that guidelines cannot always account for individual variation among patients. They are not intended to supplant physician judgment with respect to particular patients or special clinical situations. The Infectious Diseases Society of America considers adherence to these guidelines to be voluntary, with the ultimate determination regarding their application to be made by the physician in the light of each patient’s individual circumstances.”

So following the example of Jordan Fisher from Under Our Skin Documentary I decided to e mail the following to the IDSA in particular Carol Baker who I hold personally responsible for the manipulation that produced yet more denial of Chronic Lyme Disease.

In the circumstances I felt I was very restrained, although I realise it will make no difference I hope sufficient people are moved to do the same and clog up their e mail boxes, thus causing an inconvenience, mild compared with the years of unnecessary suffering the likes of IDSA are causing.

Carol Baker

Now you are getting over your elation at managing to coerce your fellow doctors into voting unanimously to support the 2006 Lyme Disease Guidelines, you might like to spare a thought for the many thousand of patients whose lives have been turned around by simple oral antibiotics.

I was one of the fortunate patients to be treated on long term oral antibiotics, one of many thousands around the World whose symptoms receded on antibiotics and deteriorated off them. Antibiotics improved my symptoms more significantly than either steroids or any NSAI medication had done.

I had severe arthritis and muscle weakness so that at one time I had difficulty standing and walking across a room. I could not walk up or down stairs for 3 ½ years and I was retired early on ill health grounds, it took 5 doctors and 3 Rheumatologists 4 years to diagnose me. My doctor suspected Lyme Disease because of a beneficial response on a chance course of antibiotics. I was not aware of Lyme Disease but had visited the surgery at times of bites, bulls eye rashes summer flu' and migrating arthralgias. Other cases had been confirmed at my surgery.

I was fortunate to have a thinking doctor who treated me on my response to antibiotics because she read ILADS Guidelines. Eventually I consulted a Doctor who specialises in Lyme Disease and he confirmed my doctor's suspicions.

Politics and politics of medicine can argue indefinitely but my return to good health with no pain, no disability and no medication and to be able to garden again and cycle is good enough for me.

If IDSA wishes to close its mind to the benefits thousands of patients have, including doctors, to long term antibiotics and continues to support their discredited Guidelines because of the lack of Randomised Placebo controlled trials whilst it’s members hold the purse strings for research and refuse to do such trials the status quo may remain in their minds, but will not in the minds of patients who can make their own decisions.

The presentations to the IDSA review panel from ILADS supporters is available for the World to see and make their own decisions.

You may have won this battle but at what cost to patients.


  1. Hi Joanne - thanks for checking my blog and your supportive words. I was having trouble finding your story in the sidebar of your blog. Am I looking in the wrong spot? Just wanted to know what antibiotic and for how long...

    Thanks again.

  2. Hi Gin nice of you to pop by.

    My story is at the bottom right in my side bar and an update below which mentions the antibiotics I tried.
    I don't talk too much about my treatment in detail because all our symptoms have different variants although a suprising commonality when talking to people on Eurolyme.

    Different antibiotics seem to work differently for different symptoms and for different people so that is why it is so important to get to learn as much as possible about Lyme and about your own response to treatments as patterns do become apparent when we look back at a symptom log.

    Best wishes.