Thursday, 1 March 2012


An excellent program discussing Lyme Disease was on the Diane Rehm show.
 listen here
Transcript here 

Dr Paul Auwaerter associate professor of medicine, Johns Hopkins University School of Medicine and clinical director, division of infectious diseases. Johns Hopkins Hospital
Dr. Samuel Shor internist, private practice and associate clinical professor at George Washington University.
Dr. Brian Fallon professor of clinical psychiatry. director, Lyme and Tick-Borne Diseases Research Center. and director, Center for the Study of Neuroinflammatory Disorders & Biobehavioral Medicine Columbia University Stephen Barthold professor,department of pathology, microbiology and immunology Center of Comparative Medicine at the School of Veterinary Medicine, University of California, Davis

Dr Auwaerter attempts to defend the position of the IDSA and Stephen Barthold tries not very hard to convince us that although infection persists after 3 months of antibiotics that doesn't prove they cause disease. Earlier post here about that study.
Dr Fallon and Dr Shor eloquently discuss their experiences with patients with chronic Lyme Disease and as Dr Shor says until science has figured it all out all doctors can do is go off how their patients respond, many but not all respond well to longer courses of antibiotics.

Dr Shor refers to his study on patients with ME/CFS finding that many of these patients met a clinical diagnosis of Lyme Disease he treated with antibiotics and found 88% responded well to that treatment.

I have posted about that research earlier here

I have also posted about Dr Fallon's presentation to the Institute of Medicine Workshop here

Perhaps things are beginning to unfold at last and with the latest research here it is going to be very difficult for the IDSA to maintain their current postion of denial of Chronic Lyme Disease.
An interesting on line chat with Phil Baker can be read in the comments of Lyme Policy Wonk blog here
'Philip J. Baker, Not a M.D., was for ten years the Program Officer for the NIH overseeing Lyme disease research grants. An overwhelming proportion of these grants were awarded to a few favored members of the Infectious Diseases Society of America (IDSA) who authored the controversial 2006 IDSA Lyme disease guidelines.'

The latest two points say it all for me

 Dr. Baker, On the precise definition, I agree with you –especially now that we have so much more information on infective strains, on proteomic patterns (Schutzer), and even on persisters. One could come up with a definition that was far more precise than anything used in the NIH studies today…. I am completely on board. Be precise and let the chips fall where they may. But I think you might agree with me that we are not talking JUST about Lyme disease, chronic, acute or otherwise. The definitions must be precise, but alternatively, here, the net should be cast wide to see what we are dealing with, really. These days you can do high-volume pathogen discovery rapidly and to great precision, something impossible in the days that Klempner did his work. Similar technologies discover chemokines, cytokines, and the like –hundreds of molecules involved in the immune cascades, much of it automated today. Who knows what we might find? But if you are looking for one thing, only, in this situation your hands are tied. This is not 1980, it is not even 2000. We can do much more. I can’t imagine that you really disagree with this –in fact I think that to some degree, it is what you are saying, yourself, cast the net wide. Be precise. I find all the NIH studies vague to one degree or another, and I think we can do better. We can be more precise, more specific, more wide-ranging. It is imperative to do better, because so many remain ill. Whatever the answer, for anyone to claim they see some version of ultimate Truth in the Klempner study is absurd. We must move on. Pam Weintraub

 Hear, hear, Pam. No one should be making sweeping conclusions based on the clinical trials that have been done so far. We need to give evidence-based – not opinion-based – guidance to doctors, including acknowledging where the evidence is inconclusive. Just because chronic Lyme has not been defined does not mean it does not exist. And until the day comes when we have a sure cure for Lyme, we need to give patients choices and let their doctors freely use their clinical expertise.
 Phyllis Mervine


  1. Excellent review, many thanks Joanne. By saying that chronic Lyme doesn't exist means they don't have to do anything at all, they don't have to look for cures (it doesn't exist so why should they?) they don't have to acknowledge patients (they must all be psychiatrically ill anyway in their minds not ours & the insurance companies love that notion aswell!) & nor do they have to spend money on research. Although it's seemingly curious that money is being spent on vaccinations on something that is supposedly easy to treat, strange eh? Sadly the fact of chronic, persistent, post lyme call it what you will, will not go away, just because the IDSA among others put the fingers in their ears & say 'la, la, la not listening.' The scientists & doctors who strive to look beyond the 'doesn't exist' mentaility are the ones that pave the way for improvements & progress for the future. They deserve huge rewards for what they do instead of the criticising & bullying that seems to take place. After all, isn't the medical profession there to HELP not hinder? Mayeb one day it will come :)

  2. I spent a fair amount of time on the Lyme Policy Wonk blog asking Dr. Baker questions and not getting direct answers - or getting answers but they were either only a fraction of the response I hoped for or they were a repetition of something he'd already said to someone else on the blog.

    Why was it so hard to get him to think outside the box, even when I was asking him to consider that immune system problems and persistent infection could occur alongside one another? Seems that having research teams work on these two problems together would go a long way towards ending the controversy.

    We need more research, and for studies specifically aimed towards that which impacts those of us with chronic Lyme disease the most. How to ensure that studies that help us which are among the 25% of all applications submitted for funding to the NIH is a good question. A number of people are saying we need someone other than the NIH to fund and conduct such studies. I wouldn't argue against more research, it is one of my top goals for chronic Lyme disease.

    I wish all doctors understood this: "Just because chronic Lyme has not been defined does not mean it does not exist." Yes. Exactly.

    1. Thanks Camp I have followed your comments on the Lyme Policy Wonk blog with interest. It was good that Phil Baker made some comments but so much more needs to be discussed.
      Interesting to see that one of his criticisms about the study has now been cleared up with the fact that Ceftriaxone was used not Ceftiofur and yet he is still pressing the Authors of the study on that point.

    2. "Interesting to see that one of his criticisms about the study has now been cleared up with the fact that Ceftriaxone was used not Ceftiofur and yet he is still pressing the Authors of the study on that point."

      I noticed that. I'm wondering what he's thinking... Either he's thinking that they did not make a mistake, and they really did use ceftiofur and are trying to cover that up - a really serious charge there, and I don't have any idea why he would jump to that conclusion - or it's a general case of where he thinks the overall study is flawed in a number of ways and having posted the use of ceftiofur when it was ceftriaxone would be to him just one more example of something for him to pick at as to why it was a flawed paper (if not a flawed study).

      I don't know what Dr. Baker was thinking, but in my opinion he was being excessively negative about this paper and the study. It's fine to have questions about it, as a scientist and researcher, and want to get confirmation from the authors themselves about what they did regarding their materials and methods, and okay to be surprised or doubtful about certain aspects of the study. That's what scientists do if they're doing their job: they try to "stress test" an idea and see if at any point there's a point of failure or some area that doesn't make sense and needs further examination.

      That's not what Dr. Baker seemed to be doing in his responses, though. His claims in that blog imply to me that he seemed to want to put the paper down.

      Why? At least two reasons come to mind:

      1) One of his early comments is that he says he hadn't even seen the paper or known about the results of the study until a couple days before Lyme Policy Wonk blog posted their entry about the 12 year delay.

      This indicates to me that he wasn't really in touch with the research team after a while, didn't know what they were doing or what later technical setbacks and problems may have been, whatever they were. He was not involved with the research and out of the loop.

      He didn't know, yet based on a few days' of having read the paper, already came to certain conclusions about the study without asking the authors questions about either the paper or the study.

      2) He kept asking Lorraine Johnson and others that if they were so concerned about the delay (or the confusion over whether ceftiofur versus ceftriaxone was consistently used throughout the study) that Lorraine and/or others could have contacted the authors of the research (Embers et al) and asked them about the reasons for the delay themselves.

      Yet here, for a COUPLE DAYS, Dr. Baker himself did not contact the authors and ask them what the deal was and why ceftiofur was mentioned in the paper - even as he was clearly upset about the antibiotics and repeatedly voicing a concern about it since he first raised attention to the issue.

      Anyone looking at his reaction can see that while he asked other people to check in with the authors about what happened, he failed to do so himself. He then went on to seemingly create his own story about what might have happened there without checking in.

      He seemed to want to continue in this approach and talk to people who disagreed with him and question his motives. Which is striking in itself. But either way, it struck me as unusual that he would voluntarily do so knowing so many patients oppose his ideology about chronic Lyme disease.


      Without knowing further information, it sounds like he leaped to conclusions about the paper's contents, the study design, and study outcomes. He had his position and opinion about it before he got more information, and his position was possibly already decided.

    3. If he were to approach this as both a scientist and an educator (!!!)(which I am not certain is his designated role, but still... in a general sense, scientists are expected to set the record straight), then he should have found out what happened himself and cleared it up.

      Thankfully, Embers et al did issue a correction. But even then, Dr. Baker did not take it as correcting a typo - he was still suspicious that Embers et al actually did something wrong. The question there is why? Why would he think they would have made an error? I have no idea. No one seems to know why.

    4. I keep checking back to see if Embers has replied to his question about ceftiofur - I could see that it was only used once and has been corrected. I do take his point as to why was it put there mistakenly- there could be many reasons maybe that an abbreviation was used and in the animal world they are more likely to use Ceftiofur and so the mistake in the wording. Either way I hope Embers answers the question sooner than later.
      Interestingly I see Burrascano has asked why the delay - I do hope there is an answer to this question soon.

      As to Phil Baker I think he spends so much time spinning the IDSA/ADALF view he has forgotten to check the science which of course does not stand still as Dr MacDonald so carefully points out in one of the recent Lymenet Europe posts.

      It was good to see Dr MacDonald's comment on the Embers study well reasoned and encouraging.

      I suspect Embers et al find themselves in a very difficult position having been funded by NIH and being expected to bring in results that support NIH view to have produced yet further science that actually opposes the Establishments view of Lyme Disease can't be popular and may well cause further funding to be less easily accessible.

  3. See, it's okay - I believe you meant to say ALDF and not ADALF. It's kinda like that ceftiofur/ceftriaxone thing... ;-D

  4. Re Embers et al position:

    They originally got the funding somehow - I think in the Lyme Policy Wonk blog, Phyllis Mervine and Carl Brenner's urging to do the study might have had some role in that. I wasn't there, though - this is pre my Lyme history, others who were involved back then could explain how it happened better than I could.

    Only a small percentage of those NIH studies get funded. What the criteria is and how much politics plays into it, I've heard a range of opinions. Somehow Barthold has managed to get funding for his research and it has had the potential to be controversial.

    I don't think the Embers Rhesus macaque study will limit funding for similar projects. If anything, I would imagine someone would want them to do a followup near-duplicate study as they proposed they would. Even Dr. Baker would probably want that, even though he's out of the NIH now and has criticized this study. I think he'd want it just to see if they can get the same or very similar results.

    1. Thanks Camp I found the conversation on the Lyme policy Wonk blog interesting because you do get to hear a bit more of the history of the politics.

      I do hope there are more studies soon. Especially ones suggested by Dr MacDonald.