nos-trum. pronunciation: \nos'-trum\. noun. Etymology: Latin, neuter of noster our, ours.
1. a medicine of secret composition recommended by its preparer but usually without scientific proof of its effectiveness.
2. a usually questionable remedy or scheme.
See here for more discussion.

Saturday, July 17, 2010

Advocacy Group Gets Law Passed On How Doctors Should Treat Lyme Disease

What are the implications of allowing non-medically trained groups to pass laws facilitating a particular treatment regimen?

Should the American Diabetes Association push legislation that tells doctors to treat only with certain medicines and in certain dosages?

Apparently one group has been successful in doing something similar.  The condition:  Lyme disease.  The treatment regimen:  allow treatment with antibiotics for more than 30 days.  90% of cases are cured, if caught early, by short-term treatment.  According to the Cape Cod Times (July 17),
"A new state law that spells out the rights of physicians to treat chronic Lyme disease patients with long-term antibiotics is being heralded as a victory by advocates of people afflicted by the tick-borne illness.  The law is meant to prevent doctors who treat patients with antibiotics beyond the 30 days recommended by some professionals from billing insurance, (sic?) said Brenda Boleyn, who chairs the Cape and Islands Lyme Disease Task Force, a community organization comprised of local government, agencies and Lyme disease patients."
Is this a trend, legislature defining how certain conditions can or should be treated?  The HCR law has standards for preventive services to be offered and when, but makes no claim to decide how doctors should treat any particular disease (some fear the IMAP will do that).

There are several problemsOne, the benefit of long-term treatment of Lyme disease with antibiotics has never been established.   Most of the success stories are just that, stories.  Two, the studies done so far have failed to clearly distinguish between what naturally happens with Lyme disease over the long period and whether long-term antibiotics have anything to do with the course of the disease. 

Anecdotes such as the following:
"Nancy Wood of West Barnstable had Lyme disease that went undetected for six to seven years. She required three to four years of oral antibiotics to get better..."I'm doing great. I have my life back," she said. "So do a lot of other people" who have been treated aggressively, said Wood."

are just that...anecdotes.  And the plural of anecdote is not data.  It is equally possible that it took several years for her immune system to adapt to the consequences of her previous infection...and the antibiotics did nothing.  There's no way to know.

Three, advocacy groups such as the Cape Disease Task Force rely too heavily on testimonials (always suspect) and fail to understand how the science of medicine operates.  Their view is if it's even possible that this type of treatment worked for one person, then it should be approved.  They fail to consider the other side of the story.

Long-term antibiotic therapy is rarely justified because significant new harmful adverse reactions (in addition to those of just using an antibiotic at all) arise with extended use...rarely, they cause fatalities.

This is why the scientific community has been reluctant to endorse proposals for long-term therapy in Lyme Disease.  Some infectious disease specialists have used it, other says it's unproven.  But, there is a clear down side, and a not-clear upside.  It's quite possible that this form of therapy does more harm than good, or does no good, at this point.  Lyme disease is poorly understood, very difficult to diagnose, and treatment is often disappointing.

It may turn out that in selected cases, long-term antibiotics are the treatment of choice.  The science and safety aren't there yet.

But it doesn't justify a legal standard that advocacy groups should be making scientific decisions.

Doc D


Joanne said...

While the science is held back by those who do not accept antibiotics can help patients with a Lyme like illness patients can't continue a downward descent into chronic and sometimes very painfull ill health.

Many patients have the experience I had and found by accident that antibiotics significantly improved their symptoms.

Doctors with most medical complaints can treat according to their patients response.

With informed consent doctors can choose to continue on antibiotics.

The reality is that any doctor choosing to treat differently than the IDSA discredited guidelines can be threatened with loosing their licence as happens here in the UK and has happened in Canada as well as USA.

What these legal challenges are about is giving the doctor the right to choose whatever treatment they believe is right for their patient without fear of prosecution.

Sadly there are too many people writing articles such as yours and proliferating similar views as you.

If you had experienced this illness yourself or a close family member you would take more time to look into the considerable body of science that supports ILADS guidelines. A look at the presentations to the IDSA review hearing can be found on the ILADS website at

To dismiss antibiotic improvements of thousands of patients the World over as a placebo effect or an anti inflamatory effect may hood wink the layman but not all doctors.

Incidentally many of the doctors (several I have spoken with here in the UK) supporting long term antibiotic treatment for patients have personal experience of this illness and have taken the time to learn more about the benefits of long term antibiotic treatments.

Doc D said...

Thanks for your comment. I’m glad to hear you got better. LD is a horrific problem. I’ve had experience with it, and have 2 colleagues who are specialists, and a friend whose daughter has had a slowly progressive worsening over the last 15 years (despite AB). I have agreed with long-term therapy using antibiotics on a couple of occasions. But, even so, the science is not yet there to know exactly what’s going on. Some people get better, others don’t; some get better w/ AB, some don’t, and some get better w/o AB. This is not a clear picture, and we should be very cautious, because there have been serious complications of therapy.

But the target of my article was not AB and LD. It was about the law. Your point about threatened licenses is a good one, but my concern is with the principle of legislating specific treatment. This is a slippery slope. In just this way chiropractic quackery established itself as an approved treatment in this country; there was (and still is) no science to support it, so chiropractors and their patients lobbied for legal approval. Now we’re stuck with it.

As far as licensure goes, still the best place for that decision is the state medical board, based on the best science we have. It’s not perfect, but a lot better than lawmakers doing it.

Joanne said...

I think the problem here is that the science is not perfect but is being treated as difinitive by the IDSA.

If they indeed accepted that their Lyme disease Guidelines were exactly that Guidelines instead of using them to target doctors who are treating their patients according to their patients needs then this legal action would never have been pursude.

I am very well aware that a considerable number of patients with Lyme or similar illness do not respond and improve on antibiotics but that in itself should not prohibit patients like myself being treated when the response was so clearly evident not just to me but my treating doctors.

The risk of antibiotic complications for me was irrelavent because I would have not wished to continue a life so full of pain and so disabled so it was a win win situation.

This whole business with Lyme is a disgraceful affair compunded even further by the IDSA shinanegans over the voting especially on the reliability of the Lyme Disease testing. 50/50 vote to say this recommendation should be kept as it was. Clearly that was 50 % of the vote saying the available science does not support the recommendation.

So what does the IDSA do they sweep aside that recommendation as not a necassary part of the voting requirement.

Lorraine Johson on the CALDA blog Lyme Policy Wonk has much to say about this matter.

Sorry to meander away from your topic of Law interfering with medicine but when medicine acts as though it is above the law then the law as in every other walk of life needs to intervene.

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