Health Through Knowledge

The Serano Group

Wednesday, January 14, 2009

Heart of Darkness

Government agencies created the Lyme disease mess.

In the 1980s, U.S. government agencies made bad choices for setting Lyme disease policy. Either the big four of the medical establishment—health insurers, MD trade groups, pharmaceuticals, and hospitals—pushed the agencies, or the agencies themselves directed the policies. The lines are so blurred, it is hard to tell the driving force.

After public health officials gave the “Lyme disease” label to a mischaracterized set of Borrelia infections in the late 1970s, they soon began a campaign of error management, often finding success by formalizing their missteps. Their biggest mistake was they thought they could turn Lyme borreliosis into an easy to treat, geographically limited disease. Then they said tests were better than any facts could justify. Next, they were convinced they could control Lyme disease with a vaccine

They were appallingly wrong each time. Citizens have complained loudly, but not always effectively. Thousands more are kept ignorant of their infections and lives are left in shambles. Health care dollars are squandered as government agencies try to save face and somehow turn all this into a money-maker for private interests producing test kits and vaccines.

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Posted by Joel Spinhirne
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Saturday, December 13, 2008

What’s Going On?

Why doctors sound irrational when they talk about Lyme disease.

Those new to Lyme disease need to cross a threshold of disbelief. A medical system that ignores well-known infections and even becomes adversarial seems unbelievable. Yet we regularly hear stories of citizens denied care simply because they would like their doctor to consider Lyme disease as a cause of their symptoms. Many have positive tests for Lyme disease. Some are denied care even for problems unrelated to Lyme disease. They are told if you ignore Lyme disease and let me ignore it, maybe I will be your doctor. Doctors’ emotional responses to this disease predominates treatment and diagnosis so greatly that common standards of reason and decency are completely trampled.

It usually takes a specific, direct patient-doctor encounter for citizens and their families to see the true nature and extent of the problem.

The ignored reality is that Borrelia infections, including Lyme disease (Lyme borreliosis), often attack the central and peripheral nervous system and can cause extreme pain, loss of motor function, cognitive decline, and psychological problems. Endocrine and immune system dysfunction are also common. Untreated, Lyme borreliosis can produce blindness, disability, and death. These symptoms and outcomes are nearly identical to syphilis, another spirochetal disease that has been studied for centuries.

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Posted by Joel Spinhirne
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Revolving Door

The NIH Lyme disease program.

We recently reviewed the NIH web pages on Lyme disease. While not as biased as the IDSA treatment guidelines, they still overstate much and spin the interpretation of clinical trials and other research questions.

Past Lyme disease program directors at the NIH have been so extreme in their positions that they have finally gotten the federal government’s equivalent of the boot, meaning they were told to sit at their desk and do nothing. The last holder of the post, Philip J. Baker, recently moved from his government job to executive director of the American Lyme Disease Foundation, a nonprofit dedicated to promoting commercial medical establishment opinions on Lyme disease. He also just wrote a public relations piece promoting biased and unsubstantiated positions on Lyme disease. So just how were federal funds spent on Lyme research during his tenure?

We wish the new Lyme Borreliosis and Related Diseases Program Director, Joseph J. Breen, great success in increasing our understanding of borreliosis.


Posted by Joel Spinhirne
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Seeing Nothing

Lyme disease research is manipulated. Take a look.

Two controlled trials of antibiotic treatment in patients with persistent symptoms and a history of Lyme disease, New England Journal of Medicine, 2001. 345(2):85-92.

Klempner, M. S., Hu, L. T., Evans, J., Schmid, C. H., Johnson, G. M., Trevino, R. P., Norton, D., Levy, L., Wall, D., McCall, J., Kosinski, M., Weinstein, A.  

The NIH-funded Klempner study is often cited as important to our understanding of treatment for Lyme disease. At The Serano Group, we find the study interesting mostly because it shows how easy it is to manipulate research and how readily scientists, journalists, and the public accept this type of bias uncritically. (You can read our detailed analysis of the study here, but you may want to continue reading for background.)

While the study has been discussed often since its 2001 publication, its primary failure as a piece of research is rarely mentioned: the study measured hardly anything post-treatment. The Klempner study tested a single treatment for patients with persisting Lyme disease and was unable to discern anything. The only question that remains is how hard did they try?

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Posted by Joel Spinhirne
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