Crisis of care: the Lyme controversy is costing Texans access to health care practitioners specializing in lyme disease

What does this mean for you?

You may not yet know it, but there is a health care crisis in Texas. For some, it merely lurks in the shadows; for those already afflicted with tick-borne illness, it may be life-threatening as access to competent medical care slips away. Texas is now joining California, New York, Florida, Pennsylvania, and other states to mobilize for protection of our Lyme disease specialists from unwarranted harassment by their medical boards.

If you have Lyme disease, you know all too well the impact of medical politics. It is the reason it took you months, years, or even decades to get a diagnosis and begin treatment. Those who have not been directly impacted yet are at risk for the future and may not even know it. We encourage everyone to learn the facts and know that even if this issue does not affect you now, it could someday end life as you know it, either through your own illness or that of someone close to you.

While state officials and many doctors still insist that Lyme disease is rare in Texas, there is increasing and statistically significant evidence to the contrary. The crisis is not just limited to the possibility that you will become infected; if you become ill with Lyme disease, it will probably take you months or even years, and thousands of wasted dollars, to get a proper diagnosis. Once you find a physician with the expertise to give you a fighting chance of recovery, it may even be too late.

And, if you live in Texas, it is likely that you will have had to travel out of state to find this physician.

This untenable situation continues in spite of special hearings held by the State Senate Committee on Administration in 2000. These hearings resulted in a number of recommendations and actions intended to avert the dire situation with which we are faced today. We need to get Texas back on track.

Why are we here?

Central Texas' only Lyme specialist, Nurse Practitioner Ginger Savely, was forced to close her Austin practice on March 31, 2006. Her decision was the direct result of a phone call to her supervising physician from the Executive Director of the Texas Medical Board (TMB) advising him that continuing to practice with Savely would put his medical license at risk. This turn of events was especially stunning coming only one year after she received the 2004 Texas Nurse Practitioner of the Year Award for her work with Lyme patients.

In the March 30, 2006 Austin American-Statesman, TMB Executive Director Dr. Donald Patrick states that “the board has not disciplined doctors in recent years for treating Lyme disease.” While Dr. Patrick's statement may be factually correct, there is anecdotal evidence that, while the Board may not be leaving a formal paper trail, the tactics are far more subtle, and highly successful. This is evidenced by the dearth of health care professionals in Texas with sufficient knowledge and experience to diagnose and treat Lyme disease.

Some doctors may be simply un- or misinformed about current scientific research and the extensive clinical experience of Lyme specialists who treat the disease with long-term antibiotics. Through patient reports of discussions with their doctors, however, it is clear that many recognize the existence and ravages of untreated chronic Lyme disease and the need to treat long-term, but are not willing to come under the accompanying scrutiny of the TMB for administering extended treatment.

The below-the-radar subtleties of the TMB's tactics are obvious from the description of the phone call from Dr. Patrick to Ginger Savely's former Austin supervising physician as described to the Statesman:

“It was not a threatening call,” Frederick said. “It was not a call to stop treating. He said we had to be real careful treating chronically ill patients in a way that was not standard in the community [referring to use of long-term antibiotics].”

We are not sure to what community Dr. Patrick was referring because he was surely not talking about the Lyme community in Texas or anywhere else.

As a direct result of this phone call, Ginger Savely's 400 active patients are scrambling to figure out how to see her in her San Francisco practice or find a local doctor who will continue their treatment. Many will ultimately not be able to pursue either option; Lyme disease disables and consequently many patients have severe financial, as well as physical, limitations that make travel impossible. Ultimately, they may find themselves left to deteriorating health without a medical lifeline.

While Ginger Savely is not the first medical professional in Texas to stop treating Lyme patients due to the controversy over diagnosing and treating Lyme disease, this latest loss has galvanized the Texas Lyme community and served as a catalyst for action.

Stand Up For Lyme exists in her honor, along with that of all of her courageous colleagues in the Lyme community who day in and day out place their medical licenses and ability to earn a living at risk to care for us.

What is the controversy?

There are two major standards of care for Lyme disease, both of which use FDA-approved medications. One standard holds that a short course of antibiotics, varying from 10 to 30 days, is sufficient to eradicate the infection, and further asserts that any lingering symptoms are likely the result of either residual tissue damage or an autoimmune condition which will not respond to further treatment. The possibility of continued infection is given little consideration.

This first standard is promoted by the CDC and related agencies with the backing of the Infectious Disease Society of America (IDSA) through a peer cadre of academic physicians engaged primarily in research. The result is a history of literature which is self-serving and stagnant. It nonetheless perpetuates continued funding from the very agencies who are, for reasons about which we can only speculate, unwilling to embrace the research and clinical experience of Lyme specialists who have treated hundreds, even thousands, of patients.

Unfortunately, the prestige of the sponsors and the perceived authority of literature appearing in peer-reviewed medical journals is sufficient for most readers to accept their conclusions without a critical examination of the methodology, which is often faulty. Thus, this obsolete Lyme disease protocol which terminates treatment at 30 days in spite of continuing and often debilitating symptoms was established more by reputation than a growing body of unbiased scientific learning.

The second standard, based on a significant and increasing volume of scientific research and clinical experience, has found that continuing symptoms are highly likely due to ongoing infection, and that individualized treatment based on length and severity of symptoms, along with the patient’s response to treatment, offers the best opportunity for remission. This individualized protocol is based on treatment of thousands of Lyme patients who chose to seek out specialist practitioners who recognize that no treatment, or insufficient treatment, does not equate to “do no harm”

Medical professionals who offer the extended treatment protocol to their patients do so at their own professional peril due to the influence of an uninformed medical board which has not yet recognized the prevalence of the illness in Texas, its absolutely devastating impact on patients, or the right of patients to choose the method of treatment when more than one option exists.

Under the American Medical Association's “Doctrine of Informed Consent”, it is an ethical responsibility and legal obligation that a physician informs the patient of available treatment options. This doctrine has been codified in law in all 50 states.

Promoting or suppressing treatment information for any reason, whether in pursuit of profit or to fulfill an agenda of medical politics, is a clear violation of ethics and law. Further, the denial of treatment betrays the most fundamental tenet of a physician's obligation to his patient to “first do no harm.”

The driving forces behind the actions of medical boards against Lyme practitioners in Texas and elsewhere are mostly a mystery to patients. Could there be elements within the medical establishment with their own agenda? Or could it simply be lack of information and experience? What is the role of the insurance companies, many of which routinely deny claims for Lyme treatment beyond 30 days?

Regardless of who is driving denial of treatment, lost in the process is the right of a patient to choose when multiple standards of care exist. Unwarranted investigations and charges brought by medical boards against doctors who offer extended treatment are a considerable distraction to these doctors as they are forced to divert time and other resources toward legal matters and away from patient care.

Some of these doctors may ultimately lose their medical license, others may stop treating Lyme patients or accepting new ones, while still others may choose to leave the state. Many more doctors may elect not to treat these illnesses at all in order to avoid being targeted by the Board. Indeed, this is already happening.

The end result is that very ill patients are subjected to further suffering and deprived of potentially life-saving medical care. When this happens, it is you, the patient and potential patient, who are at risk. The future of your access to treatment for Lyme and related illnesses in Texas depends on everyone's awareness and help.

What can you do?

Please take the time to review the information provided on our web site to learn about Lyme in Texas. While we endeavor to keep this site focused on our own state, we have provided links to other web sites with a broader focus for those who wish to learn more.

Then please join our effort to raise awareness of the prevalence of Lyme disease and other tick-borne illness in Texas, and to provide a safe environment in which our trained medical professionals can treat us without threat of frivolous challenges from the Texas Medical Board.

If you can provide us with additional insight and information, or wish to make suggestions about this web site, please contact us. We may not get back to you right away, but please know that your participation is important and appreciated.

— Co-Founders Suzanne Shaps and J. David Kocurek, Ph.D.