I am sorry. I don't have time to review all the responses on my blog. I am glad it has been so active. I wanted to give my impressions from the 9th annual ILADS meeting. I am going to go out on a limb and open myself to storm of criticism. But as a med school professor once told me: "You got to call 'em like you see 'em."
In fairness, I have not yet given my feedback to ILADS. It took me a while to "digest" the meeting. I was disappointed. This was my second ILADS annual meeting. I go to many CME activities. This conference was not up to the standard that I would expect.
None of the lecturing physician faculty hold academic appointments at Medical Schools. This was not true last year when Sam Donta and Dr. Fallon presented lectures. There may be very few medical school faculty/ practitioners who would or could present at the meeting; but there are many faculty members who could present basic science data. There is much work in this arena. Much of it is done in other countries. These sorts of presentations would have increased ILADS' credibility as an "international" organization. Perhaps these lectures would be boring to the average attendee; nevertheless these are an essential ingredient of high caliber CME activities.
Dr. Phillip's review of Chronic Lyme-An Evidence-Based Review, was the highlight of the meeting. This was a detailed presentation replete with scientific data and a thorough review of the literature. Other lectures were interesting, but lacked an evidenced based edge.
The latest break through for chronic Lyme, the Fallon study was not discussed or critiqued at the meeting. What I heard from faculty was: "You know, the Fallon study was limited; they had to work within narrow parameters."
Most of the lectures were not science based. There were based on theory, suppositions, anecdotal information and stuff that "everyone knows."
There was a lot of information related to alternative medicines and herbal therapies.
My opinion: ILADS needs to stay focused on the science of Lyme medicine. The Fallon study is important. Dr. Cameron, the president of ILADS published a study on the effectiveness of amoxicillin for chronic Lyme syptoms. This work was not presented. In fact, I asked one of the countries best know Lyme docs about amoxicillin. He told me that it doesn't work. He uses Omnicef. Based on what data?
There is a paucity of hard scientific data regarding the management of chronic Lyme disease. This is a problem. Meetings such as these need to focus on that data.
The meeting should at least be divided in some way. 1) Evidenced based science 2) Alternative and complementary medicine 3) Theortical issues, food for thought. The emphasis should have been on category 1.
The heavy hitters in the Lyme field all disagree with one another. Should Rocephin be used as a pulse therapy based on "kill kinetics." Where are the studies. Is Amoxil bad? Why don't you need to use Plaquenil any more with Biaxin? Oh, I am sorry, it depends on which luminary you pose the question to. Where is the evidence that chelation therapy or any of the herbal concoctions works? This list could go on ad nauseum. You get the idea.
Lyme docs are subject to an incredible witch hunt. We need to have the highest caliber national meetings.
Let's present the evidence-the data. There is more than readily meets the eye.
There is data regarding the use of Amoxil. There is data regarding the use of Rocephin. There is data regarding the use of Biaxin with Plaquenil. There is limited data regarding the use of Flagyl.
If there is no data regarding the use of combination therapy then carefully explain the rationale for this approach. You can't afford to make this stuff up when so much is at stake.
For one presenter every patient recieves thousands of dollars of lab work at the get-go. For another it is assumed that everyone has Babesia and Bartonella so no testing is needed. A highly regarded LLMD shoots off that Lyme is sexually transmitted: based on what evidence?
There should have been a critical appraisal of laboratory testing. What is the value of PCR testing? etc.
It was clear that the best Lyme experts in the land agree on very little.
I regularly attend meetings at places like Harvard. These guys are over the top evidence based.
Still, it is not unheard of for "experts" to vehemently disagree with each other. These folks can get away with it. They are not dealing with highly charged and divisive diseases and they have the curriculum vitae to back them up.
Put that all aside. The ILADS physicians are a wonderful group of dedicated caring physicians. They are on the cutting edge of changing everything that doctors thought they knew about medicine. There were many thought provoking lectures. ILADS doctors are the future of medicine!
I would have preferred for Dr. Steven Phillip's lecture to have set the tone of the meeting.
It is good to be open to many points of view. But perhaps it is better to entertain such things after the IDSA creates new Lyme guidelines which are reasonable. Or (I am being selfish) until such a time that Lyme docs come out of shadows and feel free to treat this epidemic without fearing the wrath of state medical boards who seem anxious to take them down.
I Love Lyme docs!