Physicians' Perspective on Chronic Lyme

by Richard Brand and Jane Kelman
A Reply to "Debate over chronic Lyme disease continues" by JANE LERNER

October 20, 2003

Rockland Journal-News
200 North Route 303
West Nyack, NY 10994

To the Editor:

We wish to commend you for your continued interest in lyme disease (Lyme victims battle limits, Oct. 6, 2003) and to add our perspective as physicians in the trenches with chronic lyme patients.

The article portrayed the lyme controversy as one in which the —scientific evidence" on the one hand confronted patient«s —beliefs" on the other, and therefore constructed an unbalanced picture by failing to critically examine serious flaws in Dr. Wormser«s study, in particular it«s short-term design. How can one establish the ineffectiveness of long-term treatment in a short-term study? Many patients do not begin to respond to intravenous treatment until well after the time period that Dr. Wormser«s study covered.

Our psychiatric practice has been involved in the diagnosis of neuropsychiatric illness for over twenty years, and we have found that lyme disease is routinely discounted when a lab test is negative. We have referred for evaluation patients previously diagnosed with refractory (difficult to treat, medication unresponsive) schizophrenia, bipolar disorder, obsessional disorders, anxiety and depression who had a positive response to antibiotic medication.

In a few, the laboratory testing confirmed lyme. In most, it was —equivocal." A body of evidence demonstrates that, in chronic lyme, laboratory testing is inadequate and the diagnosis must be made on the basis of symptoms. The CDC (Center for Disease Control) supports this model for clinical practice, while maintaining more rigorous exclusionary criteria only for purposes of scientific investigation. Of course, this method of diagnosis requires more time and increased costs for treatment.

Some Insurance companies, in cynical disregard of the CDC recommendation, base reimbursement protocols on the more rigorous criteria to justify denial of treatment with long-term antibiotics. Doctors see patients for less time as insurance conglomerates increasingly dictate treatment protocols and payment schedules. Long-term antibiotic treatment, in addition to carrying some risk and requiring competent and time consuming monitoring, is very expensive, and —evidence based" (i.e. simple lab test only ) managed —care" insurance companies have taken the lead in discrediting doctors who prescribe all but a few weeks of treatment.

Lyme disease, like its earlier spirochete cousin, syphilis, may attack any organ or body system. In today«s world, patients are transferred to separate doctors to treat their organ specialty, and very few treat a whole person. As psychiatrists, we are called on to treat a brain disorder, but, because of the greater time spent with direct patient care, learn about symptoms, like shifting joint or muscle pain, finger or wrist —lockup", sleep-wake disturbances, —brain fog" word finding difficulty or an increase in headaches. Sometimes an inquiry about knee pain will garner a response like, —Funny you asked that."

The article mentions that (these patients) may have some other disease to account for their problems, but fails to mention why some did not respond to accepted treatment for the other diagnoses. Lyme, like syphilis, mimics many of these other diagnoses, and some patients previously diagnosed with Alzheimer«s disease, multiple sclerosis, lupus, amyotropic lateral sclerosis, Bell«s palsy, etc., turned out to have previously undiagnosed lyme disease. Some may have both.

This reality is supported by the reversal of symptoms in some resulting from antibiotic treatment and by the use of other supportive, and expensive, tests such as the brain SPECT, serial neuropsychiatric testing and others.

The —scientific data" fails to account for those patients who do not test positively but respond to antibiotics and relapse after they are withdrawn. These patients should be permitted to continue, and to be reimbursed for, effective treatment while physicians continue to establish an accurate diagnosis, whether lyme or something else. Not having a positive lyme test should not preclude the use of antibiotics for antibiotic responsive illness, whatever it is.

Chronic lyme is complex and most physicians are not sufficiently trained or motivated to undertake the tedious and unreimbursed challenge of medical detective work required to diagnose and treat complex illnesses like chronic lyme.

It is our contention that doctors should be free to treat disease without unwarranted interference. Concerning Dr. Joseph Burrascano, the complaints against him were initiated not by patients upset about his care, but by insurance companies and doctors on the opposite end of the lyme controversy. No patients reported him, and the charges involved matters unrelated to patient care, such as paperwork.

In summary, The Journal News is to be commended for their continued surveillance of this critical topic. Lyme is difficult to diagnose and to treat, and, until more is known and established about lyme and related diagnoses, we favor legislation and support for those doctors sufficiently courageous to take on the more difficult patients who have failed to respond to medical care elsewhere.

Richard Brand, M.D. &  Jane Kelman, M.D.,  New City,  NY
[             Richard David Brand, M.D.                 ]
[ Adult & Adolescent Psychiatry Assocs., P.C. ]
[ 120 N. Main street  New City, NY 10956-3717 ]
[             (845)638-2626             ]

This letter was published by Rockland Journal-News, October 20, 2003
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Joachim Gruber