May is Lyme Disease Awareness Month
Lyme is the most prevalent vector-borne disease and one of the fastest spreading diseases throughout the United States, and the subjects of diagnosis and treatment of Lyme are politically-charged.
This series of diaries is designed to provide information to the Daily Kos community both for Lyme disease prevention and for those Kossacks living with Lyme. Because the disease is often missed by physicians, these diaries may assist an individual or two in pursuing testing which might otherwise have been missed.
The Lyme Disease Awareness series will be eclectic including personal statements, informational pieces about the science of Lyme, and calls to action for community and political advocacy.
We hope you'll all join us in learning about this rampant disease and the medical/industrial/political morass in which Lyme patients find themselves.
Collect the complete set of diaries at LymeDiseaseAwareness
Today's diary by: MsGrin LymeDiseaseAwareness
In terms of harassment and intimidation for speaking out contrary to commercial interests of "thought leaders," there is nothing that can compare in scope and destructiveness as the retaliation that has been targeted at physicians who treat Lyme disease patients. I know of at least two "trials" going on before the CT medical licensing board against doctors treating Lyme disease patients; and then there are the plethora of cases in New York, Rhode Island, New Jersey, Texas, Washington, Michigan, Wisconsin, Virginia - and I’m sure I’ve left some out. It’s always the same theme, and the same clique of "thought leaders" who are the "experts" who testify against the local docs. No wonder I have to drive 900 miles to see a doctor to treat my continuing symptoms of Lyme disease ("treatment failure") - no physician is so stupid as to allow you in the door!
- Lynn Shepler MD JD, March 31, 2009
There are no physicians in Austin, Texas who officially treat Lyme disease. The local Lyme support group will attest to that. For the most part, members of that group go out of state for treatment. The doctor who is treating me for Lyme doesn't make public that he sees Lyme patients.
Why is it so hush-hush? Why don't doctors admit to working with Lyme disease?
Because they'll become targets for insurance companies who will challenge their medical licensing with the state. How do insurance companies do that? They assert that the physicians are prescribing treatment which exceeds the IDSA standards of three to four weeks of oral antibiotics.
(See previous LymeDiseaseAwareness diary on the controversy with IDSA.)
The message of the show trials is clear. Doctors who
prescribe longer courses of antibiotic treatment, or take
other aggressive measures required for cure, may be
subject to the same treatment as Burrascano, Jemsek,
Jones, and 50 other physicians who have been investigated
or sanctioned by state medical boards. Ironically,
long courses of doxycycline, the most commonly used
antibiotic in Lyme treatment, are routinely prescribed
for acne.
EIR Science & Technology
In the case shown briefly in the video above, Dr. Jemsek had his medical license suspended for one year in North Carolina based on his treatment of Lyme patients (the suspension was stayed, and Dr. Jemsek moved his practice to South Carolina).
The suspension allowed Blue Cross to sue Dr. Jemsek for up to $100 million for treating patients who were insured by them. As you can imagine, this put him out of business in North Carolina, and threw him and his practice into bankruptcy. His website describes parts of his ordeal in detail.
Dr. Jemsek is a nationally known authority on both HIV/AIDS and Lyme Borreliosis Complex (LBC), having participated in numerous regional and national/international conferences concerned with these topics (see curriculum vitae). For well over two decades, Dr. Jemsek was acknowledged as the region’s leading care provider in HIV/AIDS. In early 1983, Dr. Jemsek diagnosed the first case of HIV/AIDS in North Carolina. This seminal event foreshadowed Dr. Jemsek’s first clinical trial in HIV/AIDS research in 1989, a trial which involved AZT, the first drug approved for use in HIV/AIDS treatment. This date in 1989 marked the beginning of an uninterrupted 16-year legacy in which Dr. Jemsek and his research staff were at the forefront of FDA-approved clinical trials for new drugs for HIV/AIDS treatment. For 23 years, Dr. Jemsek and his staff provided innovative and ground breaking medical care for the largest population of HIV/AIDS patients served by the private health sector in the Carolinas, until his practice was involuntarily halted in the spring of 2006 by the actions against him by the North Carolina Medical Board (NCMB) and Blue Cross Blue Shield of North Carolina (BCBSNC).
I'm aware of how the licensing issue works in Texas because I've attended congressional hearings on how the Texas Medical Board receives complaints about physicians anonymously. I'm know of physicians who have had complaints filed against them where the only likely complainer was the insurance company because the patients in question were treated successfully, attested to being satisfied with their treatment, and claimed no knowledge of the complaints filed, and sent letters of support for the physician. The only unhappy party was the insurance company which (anthropomorphically) may have felt it paid too much for treatment and seemingly went after the license of the physician so it could stop having to pay for expensive treatment. This works as a warning to other physicians who might want to prescribe expensive treatment.
Here's an account from New York from 2001:
In New York, we met with representatives from the OPMC, Health Department and the Governor's office, motivated by the fact that almost 60 percent of doctors who treat chronic Lyme disease in New York State have faced OPMC scrutiny the past year. At a meeting this year, OPMC reps said that "some of our best tips come from insurance companies." New York law prevents doctors from ever knowing the original complaint or complainant, thus treating doctors run the risk of spending tens of thousands of dollars defending their right to treat a patient, even when the patient has improved, the patient is not complaining, and the patient objects to his or her records being used against the doctor.
The point of this diary is not to advocate for a particular form of treatment - what we'd like to point out is that the dispute over Lyme treatment seems to be impacted by financial concerns driven by the insurance industry, the consequence of which is that Lyme patients do not get diagnosed or treated.
Lyme Disease is a hot potato: Although there are believed to be upwards of 200,000 new cases of Lyme Disease a year in the U.S., most physicians are not aware of the symptoms and do not order tests for it, leaving many patients to live with untreated disease for years.
What we need are better tests to discern the disease, and better understanding about what goes on for patients who are not cured with a month of oral antibiotics and how to make them well.