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Tuesday, May 20, 2008

Lyme controversy

The IDSA (Infectious Disease Society of America) has reached an agreement with the Attorney General's office in Connecticut. They have agreed to re-convene a panel, with new physicians, to revisit the Lyme guidelines put forth in October, 2006. Lyme disease may be the most controversial disease in the history of American medicine. Mainstream medicine, as represented by the IDSA and the CDC have failed to acknowledge the existence of chronic Lyme disease. Chronic Lyme disease is an epidemic of untold proportions which affects a large chunk of the US population. The symptoms are insidious, progressive and disabling, and are generally not recognized by most physicians practicing in this country. The cause has been promoted by the Lyme Disease Association, a consumer advocacy group, and ILADS (International Lyme and Associated Disorder Society), a professional organization for health care providers.

Lyme is vector borne zoonosis. This means it is an animal based disease which is transmitted to humans by a third organism. Lyme is named for the town in Connecticut where the first cases were described in the mid 1970s. It is an infectious disease caused by a spirochete, a small spiral shaped bacteria, similar in configuration to the germ which causes syphilis. It is known to be transmitted by ticks, mostly known as deer ticks, predominantly Ixodes scapularis.

The Lyme spirochete bares the name Borrellia burgdorferi. It is named after Willie Burdorferi who was the first scientist to see the microbe under the microscope in 1981. It is called a new and emerging disease because we have known about it for such a short time. However, most researchers believe the disease has been around for thousands of years.

The IDSA model believes that Lyme is rare, hard to catch, a mild illness and easy to cure with short courses of antibiotics. The ILADS model believes that it is common, frequently causes a systemic multi system disease which is often disabling and progressive and that it is extremely difficult to treat.

Physicians who take chronic Lyme disease seriously are hard to find. They are scoffed at by their professional colleagues and frequently subject to lengthy investigations by state medical boards stemming from complaints by other physicians. Most doctors who treat chronic Lyme do not accept insurance plans and charge very high fees.

Two states have passed laws protecting doctors who treat chronic Lyme and their patients. These are Rhode Island and California. Physicians who treat this disease in other states do so at their professional peril. Many Lyme advocates see this as a witch hunt against Lyme physicians. Physicians who treat chronic Lyme frequently refer to themselves as Lyme literate physician, or LLMDs. They point out that hundreds of publications in well respected medical journals back up their positions with regard to the disease. I am a physician who treats hundreds of patients with Lyme disease. AT this very time the medical board in my state is investigating my treatment of patients. I have opened this blog to vent my frustrations and to perhaps help some patients who may encounter my thoughts.

Let me really start this blog with the story of the first patient I encountered with what I call chronic Lyme disease. I first met this patient over 10 years ago. He was in somewhat desperate straights. He had suffered with what was clearly diagnosed as acute Lyme with serious neurological complication. In fact he collapsed in an airport when he became nearly paralyzed on one side of his body. An examination of his blood and spinal fluid clearly showed acute Lyme involving his central nervous system. He was admitted to a hospital and given a course of IV antibiotics. He improved and was sent home. He developed recurrent neurological symptoms some days later and was treated with oral antibiotics. In fact, every time he stopped taking antibiotics he experienced a return of numbness and weakness and was concerned that his initial symptoms were recurring. Despite this, his infectious disease physician pronounced him cured and refused to give him further treatment. His primary care physician continued the antibiotics for some time but ultimately discontinued them insisting that he must be cured. When he came to my office for the first time he was desperate to a find a physician who would continue prescribing antibiotics. I had been informed, like my colleagues, that chronic Lyme was a myth, not real, much like chronic Epstein Barr infection. Nonetheless, I believe my patients unless there is compelling evidence to the contrary. I have continued his antibiotics for all these years and he has generally done well. Recently, as I have increased my knowledge of the disease I have begun an effort to cure him, if possible, using a "cocktail" of medications. More to come.


cehansen said...

LymeMD--how about you consider moving to CA where you'd be protected? We need you out here! There are only 3 LLMDs and thousands of patients!

Lyme report: Montgomery County, MD said...

I don't look back here often. My writing and spelling are better- I think.

My family won't let me go.

Too bad. I had a nice time in San Fran. Is it my imagination or is the city dirtier than it used to be?

Maybe its just that the Cathedral Hill Hotel at the ILADS conference left something to be desired.

Anyway, someone needs to win the Board battle if there is to be one in my home state.

dana said...

Please contact me if you know of any lymes knowledgeable Doctors in the Santa Barbara, CA area.

Thank you,