Letters to the Editor
The Medical Politics of Lyme Disease
Mary Ann Roser's article of March 30 concisely describes the polarization within the medical community regarding prevalence, diagnosis and treatment of Lyme and related tick-borne diseases.
Dr. Lisa Ellis concludes her remarks asserting, “That's not science.” Her remarks, however, are indeed simply the myths proliferated by members of her specialty, justified by selected literature. That's not science, nor is it the critical analysis required of a medical professional to assess the complexities of Lyme disease treatment.
Ample literature and clinical experience exist to substantiate the requisite long-term treatment, and thus at least two standards of care exist. Both are easily accessible for review.
Dr. Patrick understands the ethical requirement and legal obligation that multiple treatment modalities require of a physician. He also knows well the details of his role leading to the present circumstance. The solution is simple: “Physicians Heal Thyselves”, and put patient care first.
J. David Kocurek, Ph.D.
Stand Up For Lyme, Co-Founder
Texas' loss, California's gain
Your article about Austin nurse practitioner Savely's decision to relocate to San Francisco because no doctor will supervise her practice describes a tragedy for Texas Lyme disease patients. Without needed antibiotics, they will likely become disabled, unemployed, and dependent on public agencies. On the bright side, people with tick-borne diseases in California will have better access to appropriate care.
Why should doctors be afraid to treat sick people? The drugs needed for Lyme disease aren't addictive or dangerous and Savely's 400 patients can't all be wrong.
The doctor's role is to describe the risks and benefits of available treatment options and allow the patient to make an informed decision. Since science has not yet determined the best treatment for Lyme disease, a doctor can have patients sign an informed consent form, acknowledging that the outcome of the chosen treatment is not certain.
The final choice should rest with the patients.
President, California Lyme Disease Association
The following letter was not submitted to the paper, but, instead was written directly to the reporter:
Dear Mary Anne Roser,
Thanks for writing this article… it's amazing the intransigence of the human medical community.
My wife, myself and one of my dogs have been infected with Lyme. I was stunned to read information presented to me by my vet from Texas Medical Information, Inc. from their Associate Database. In the material (Contributors: Linda G. Shell, DVM, DACVIM (Neurology) they made this statement, “While antibiotics often resolve the clinical symptoms, they do not appear to eliminate the bacteria and signs of the disease can be reactivated. Corticosteriod treatment may reactivate Lyme disease in persistently infected dogs.”
This is profound… especially when taken in the context of Ellis' statements “If symptoms persist, something else could be wrong… such as rheumatoid arthritis, or fibromyalgia…” Treatment for rheumatoid suppresses the immune system, not exactly the best thing for an immune system that is taxed in fighting a bacterial infection.
Beyond the idiotic casting about for other possibilities by Dr. Ellis, the vet community at least seems willing to recognize the ability of the bacteria to re-assert itself and the danger of “suppressing” the immune system with an entity such as Borrelia Burgdorferi. This persistent infection seems to be very much the message of that I hear coming out of the Lyme advocate community. The tone-deafness exhibited by Dr. Ellis is typical.
When I first encountered the debate regarding the disease, my wife had just been diagnosed with Lyme. She had the bull's-eye rash and had tested positive. She took the conventional treatment. We were given a cheery prognosis with assurance that all that had to be done was simply take three weeks of antibiotics.
The rash was rendered dormant, but about three weeks after the end of the short course of antibiotics, the rash became inflamed again. Anybody in their right mind could see the infection was still active. It certainly wasn't the expected result. All we got “well it was supposed to work…”
Don't misunderstand… we're grateful they were able to recognize what was going on… instead of the usual 8 doctors and years of misdiagnosis, insinuations and arched eyebrows… it's simply indicative of the advice being promulgated throughout the medical community in their reference material, but the important part is despite the obvious there wasn't any follow-up.
Why? The protocol didn't allow it. I was incredulous… I mean really, it was non sequitir at it's finest. I know without a doubt the medial personnel involved felt as we did (and no it wasn't the subject of your article), but they were professionally obligated not to deviate from the protocol.
Anyway, I'm grateful for my wife's rash since it is a tangible and undisputed clinical symptom. Otherwise, I never would have known that Lyme disease was stiffening my neck and knees… I can only imagine there are other's like myself being allowed to degrade.
I suggest a follow-up article, if you haven't viewed the interim committee videos you might find the information interesting…
Thank you for your time and interest.