To: "Gallin, John (CC/OD)" <John_Gallin@nih.gov>
Subject: Re: NIH Astute Clinician Lecture

Bottom: NIH e-mail
Top: My response (NOTE: I have used unattributed quotes from the work of others. If you want attribution, let me know and I'll republish).

What a joke!!! Your smooth weasel-speak doesn't even come close to what was reported by those of us that were there.

If NIH and Dr. Steere would stick to "studying disease" and leave the "identifying new therapies" to practicing physicians, there probably wouldn't have been any need for the protest gathering.

However, your citations on why Dr. Steere was being honored doesn't gibe with the facts. Others were there before him:

1883. A German physician records the first case of what is now known as Lyme disease. It has been epidemic in Europe for the last fifty years, and has spread to six continents. Lyme disease is one of the fastest-growing infections in our country. Its victims include fetuses and newborn.

1975. A Connecticut rheumatologist-in-training from a respected medical school claims a new clinical entity, calls it Lyme arthritis, treats it with aspirin and steroids, considers it self-limited, and sees no benefit from treatment with antibiotics.

1983. Second thoughts by the above doctor and his rheumatology colleagues who now admit that the disease is worldwide, more serious than originally thought. They start treatment with oral and intravenous antibiotics, and define three stages of Lyme disease that affect many organs including bone, muscle, connective tissue, heart, eyes, and the brain. The third stage is persistent, chronic infection.

1986. Another about-face. No more stages. No more chronic Lyme disease. The rheumatologists now decide that persistent Lyme disease belongs in one of several syndromes which include those of chronic fatigue, chronic pain, or post-Lyme. When, in order to reassure the patient, they "contradict a previous diagnosis of Lyme disease by another doctor," they may also substitute hypochondria, fibromyalgia, or pseudoLyme. The patient may or may not be comforted by other alternates that Lyme mimics. These include dozens of diseases that have already shattered the quality of life for those dismissed by unsuspecting doctors.

1997. Hope for the future. The National Institutes of Health awards $4 million to Tufts University for a study of chronic Lyme disease. Enrollment is proceeding. Results by 2000.

Given the above historical background, many physicians and patients never hear these truths:

The federal government offers no guidelines for diagnosis or treatment, but admits to possibly more than a million cases of Lyme disease in the U.S.A.; that only one-tenth to one-twentieth of cases are reported.

Serological tests may not detect up to 60 percent of positive cases of Lyme disease. Inexperienced labs, working with unrealistic standards set by the government, may fail to find Lyme bacteria hidden or camouflaged by the protein chaff that foils antibody and antibiotic alike. No tests can prove that these Lyme disease spirochetes have been killed. Antibiotics may have cleared infection from the blood, but the germs may remain in sanctuary in other cells.

In many areas, 100 percent of deer ticks harbor Lyme disease spirochetes. More than 60 percent of infected humans never notice a rash or a bite.

Untold numbers of city dwellers, weekenders, day-trippers and vacationers return home from endemic areas with flu-like symptoms that they and their physicians will never connect with Lyme disease.

Hundreds of thousands trust in religion, or treat themselves with home-style remedies or quack treatments, leaving the Lyme bacteria in permanent residence in their bodies.

Many scientist-authors in medical journals, for whatever reason, play down Lyme disease, contradict themselves and confound the public with studies meant to alleviate the fear of Lyme in their rush to be published or compete for peer review. Newspapers and magazines translate the medical jargon into their own "feel good" pap.

Not only the academies, but tens of thousands of doctors' offices, clinics, hospitals, medical cooperatives, government agencies, and insurance companies receive, and pass on, disinformation from the camp that claims Lyme disease is overdiagnosed and curable.

Most insurance companies deny claims for treatment beyond the few weeks in which Lyme disease "should be cured," and admit that with Lyme disease patients they could be "on the hook forever." With AIDS patients, "we know they'll die." Some health insurance companies pay fees to university scientists for testimony and opinion.

Many doctors are threatened by colleagues for diagnosing and treating Lyme disease. Several have been accused of profiteering from unnecessary therapies. One physician's medical, bank, and insurance records were seized by local district attorneys and the FBI. All these physicians have faced revocation of their licenses.

Late-stage Lyme disease patients show signs of neurological and neuropsychiatric disorders ranging through Alzheimer's and other dementias, loss of short-term memory, irritability, mood swings, anxiety and panic attacks, obsessive-compulsive behavior, and attention deficit disorder. Major depression may occur in 70 percent of those with chronic Lyme disease, and may result in suicide for 15 percent of them. Many Lyme disease physicians and patients wonder if some of the above truths are being withheld deliberately.

Others have already identified and use new therapies. The French identified the Osp stuff quite a while ago, yet were denied the patent. Then Dr. Astute gets so involved with an experimental vaccine that the entire Yale LD clinic has to be dissolved to avoid conflict of interest charges.

Tell me: how does your admission that LD is "the most prevalent vector borne disease in the United States" (have you forgotten the rest of the world) square with Dr. Steere's position that LD is easily diagnosed and cured? He came late to the realization that chronic LD exists (to save face, he calls it post-Lyme syndrome). If LD is easily diagnosed and cured, why the need for such an expensive, unproven vaccine? Why do so many other doctors of Dr. Astute's ilk not use the vaccine in their practices?

How do you square the expensive, unproven vaccine with Dr. Steere's mantra that denies aggressive antibiotic therapy to those of us that cannot benefit from the vaccine?

Testifying on behalf of insurance companies using his "opinions" in lieu of newer treatment guidelines does a disservice to the medical community and patients-at-large. It may be a minor source of income for him, but it is a major source for damaging the lives of chronic LD patients. His behind-the-times views, treated as gospel by insurance hypocrites, are the major cause of treatment denials, and needless disabilities.

Yup, Dr. Steere is so personable that you had to call out extra security to protect this person from a bunch of sick people. People that have been harmed by his preachments. He is so "personable, sensitive and responsive" that there is only one other physician whose name brings out more dislike and vituperative discourse.

That physician gets away with his testimony because he didn't take the Hippocratic oath. By bypassing “…Into whatever houses I enter, I will go into them for the benefit of the sick, and will abstain from every voluntary act of mischief and corruption…”, he actually smirks on the witness stand when destroying the lives of LD patients. I assume Dr. Astute did take the oath, but how he can rationalize that oath with his own insurance testimony is beyond me.

Why do we take it so hard, and so personal? Simply because Dr. Steere's tired mantra of "over diagnosed and over treated", while profitable to him, has led to needless deaths, suicides, and permanent disabilities.

You call yourselves scientists. I cannot claim the title, but I remember enough from high school science about arriving at a working hypothesis. You must use both the objective and subjective viewpoints when arriving at your "proof":

The objective – “There is no evidence that…”
The subjective – “It cannot be ruled out that…”

You scientists go ahead and keep studying until you find the evidence you so sorely need.

In the meantime, remember that many treating physicians and patients have benefited from aggressive antibiotics treatment. This is not anecdotal.

There is overwhelming evidence to support the hypothesis that some patients are not cured with short courses of therapy; that persistent disease can be demonstrated both clinically and in the laboratory, and that such patients in many cases respond to aggressive retreatment. One could convincingly argue that a doctor who failed to treat a patient presenting with symptoms of chronic Lyme disease might fall below the standard of care given what we now know about persistent infection and treatment failure. Until clinical trials are completed, this issue remains open for argument; in the interim, the standard of care must continue to make room for both approaches.

In other words, since it cannot be ruled out that benefit is derived from aggressive antibiotic therapy, the NIH and Dr. Astute should abstain from taking the position that just because you wouldn't treat this way doesn't make it wrong.

There is more to LD symptomology than RA.

Let those that know and treat in these other areas do so. Quit endangering their practices, and their patients.



--- "Gallin, John (CC/OD)" wrote:Dear Members of Lyme Disease Constituency Groups

Many of you raised concern about our recognition of Dr. Allen Steere last week (November 3) as the Astute Clinician lecturer at the NIH intramural program. The NIH Astute Clinician Lecture is made possible by a very generous gift from one of the emeritus scientists at the National Cancer Institute. The 'Astute Clinician' lecturer is a clinical scientist who has translated a key clinical observation into a sustained trail of important clinical research.

Steere was selected this year for his initial description of Lyme arthritis, for his early recognition that Lyme arthritis is caused by an infectious agent (a spirochete), for his discovery that the causative agent of Lyme arthritis is transmitted by a tick vector, and for his recent studies developing a vaccine. Dr. Steere's work represents a very important body of information leading to the definition and initial approaches to the treatment and prevention of the most prevalent vector borne disease in the United States. The work is not complete and continues to be studied actively. Several patient representatives of the Lyme Disease constituency groups came to the NIH and attended the lecture and afterwards talked informally with Dr. Steere and several members of the NIH. Those who were able to attend, we believe, found Dr. Steere to be personable, sensitive and responsive to the issues. Attendees learned that Dr. Steere and the NIH community are dedicated to studying disease and identifying new therapies. We are anxious to provide accurate and timely information to the public and recognize that information exchange is essential for people to understand our work and the utility of new therapies. After the lecture we enjoyed the interaction with the patient representatives and feel we have a better understanding of the public's concerns. We hope those patients who were able to attend also learned that we have a common goal--to improve health for all of us. Thank you for your communications and for bringing your concerns to our attention.

/s/	/s/
John I. Gallin, M.D.	Michael M. Gottesman, M.D.
Director, NIH Clinical Center	NIH Deputy Director for Intramural Research