Jun 10 2009

Follow Up on Chronic Lyme Disease

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Comments: 15

In response to my post yesterday on Chronic Lyme Disease, commenter “tnkrbell” raised some new points that will take more than a brief comment to address.

Tnkrbell wrote:

Perhaps there is more to this situation then you are aware of considering that the CT Attorney General was forced to intervene here. They did just finish an investigation into wrong-doings with respect to ISDA guidelines for Lyme disease. That entire panel was found to be implicated in wrong doings including monetary dealings with insurance companies and a whole lot more. The whole panel was fired, allowing for new unbiased guidelines to be created (hopefully it will be unbiased anyway).The link for that press release is: http://www.ct.gov/ag/cwp/view.asp?A=2341&Q=414290

This is not quite what the press release says, and includes a bit of spin. First, the IDSA guidelines remain in effect, as per a settlement with the attorney general, and they are now in the process of external review. This is a good thing – the more independent review the better. We will see what effect this has on the guidelines.

The press release says nothing about “wrong-doings” – just that they did not meet guidelines for revealing potential conflicts of interest.

Blumenthal added, “The IDSA’s 2006 Lyme disease guideline panel undercut its credibility by allowing individuals with financial interests — in drug companies, Lyme disease diagnostic tests, patents and consulting arrangements with insurance companies — to exclude divergent medical evidence and opinion.

Having patents and consulting arrangements is not a “wrong-doing” and is extremely common in medical academia.  But current guidelines do call for their declaration. I am curious about the drug company concern – wouldn’t drug companies want their antibiotics prescribed? I don’t see a “big pharma” villain in this story.

This reminds me of the history of the CDC and the anti-vax lobby. They too can find apparent conflicts of interest anywhere and then make them sound as sinister as possible. None of this changes the science, as Blumenfeld admits.

In highly politically charged questions (vaccines, chelation, and Lyme) the scientific consensus is often challenged by probing for apparent conflicts of interest. This rarely invalidates the scientific opinion, in my experience, and is more about public perception.

But I am in favor of independent review, allowing dissenting opinions, and as much transparency as possible. I think we should have it on both sides, however. While crying about apparent conflicts on the side of expert panels, let’s not ignore the glaring conflicts of interest in CT politics. Lobby groups with a very strongly held minority opinion appear to have had a disproportionate effect on pushing this latest bill through the CT legislature.

Tnkerbell also goes into addition detail into the biology of B. burdorferi. There is obviously a great deal of complexity to this issue I did not discuss in one blog entry. But let me address the primary point – that there is biological plausibility to the notion of a chronic infection requiring chronic treatment. The fact is, I never challenged the plausibility of that concept. I accept this plausibility.

Ironically, the problem, in my opinion, with advocates of the chronic Lyme disease hypothesis is that they are being too dismissive of the biological plausibility that the symptoms they are calling chronic Lyme disease are not caused by a chronic active infection.

Because of the biological complexity of such questions, the most important data to clinical decisions are clinical trials looking a the net effect of treatment. At this point, the best trials we have are negative – they show no benefit (or dubious benefit) from long term antibiotics.

At this point that puts the burden of proof on those who think they work. If so – then come up with a regimen and prove it works in a clinical trial. If the evidence shows it works – I will happily revise my opinions to accommodate the new data.

Regarding the sensitivity of Lyme titers, tnkrbell writes:

The current test methods were actually created only for epidemiology studies and were never intended for use in patient diagnosis. There are reports of test accuracy being anywhere from 35% to 70% depending on who you ask.

Tnkrbell is doing some selective quoting. The 74% figure is only for acute phase Lyme disease – where there has not been time to develop antibodies in many patients yet. The same paper shows that the sensitivity of Lyme titers is 85-90% is convalescent (after a couple of months) Lyme and 100% in late phase Lyme disease. That’s right – 100% – in the category that is most relevant to the diagnosis of chronic Lyme disease.

It is misleading to say these are not intended for clinical diagnosis – they absolutely are. The titer is designed to be maximally sensitive – the limitation is primarily on whether or not there has been time to actually form antibodies. There are, in fact, more false positives than false negative with the titer.

There is also the Western Blot, which is a follow up test designed to be more specific – meaning fewer false positives. When used in combination, the Lyme titer and Western blot offer great sensitivity and specificity – suitable for clinical diagnosis.

There is also now Lyme PCR which is not used for routine diagnosis but is a very sensitive test for the presence of the spirochete itself, rather than looking for antibodies against the spirochete. This is often used in research, however, and can be used in specific cases.

It is simply incorrect to say that our current diagnostic methods are not reliable. This is part of the CLD propaganda but does not reflect the current science.

I want to emphasize my position here – I am in favor of objectively and thoroughly looking at all the scientific evidence and coming up with the best science-based recommendations we can. The political controversy surrounding the question of Chronic Lyme, however, has hampered this process. It is possible that it has, among scientists, made dissenting opinions difficult to express – and we need to safeguard against overreacting to the political controversy. Therefore I am in favor of as much transparency and independent review as possible. But I believe it is the demonizing of scientists by CLD patient groups that has poisoned the scientific atmosphere of this question – then they decry the very poisoning that they created.
Also I do not believe that all the evidence and transparency in the world will end the controversy. As a commenter on my first blog entry on this topic wrote: “You will never convince me long term ABX is ineffective.”

As we work for keeping the scientific process as pristine as possible, we should also work against using the political process to rig the game – and that is exactly what CT has just done.

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