LETTER TO THE EDITOR of The New York Times Sunday Magazine, 6-18-01, By Rolf
``I was interested to see your article on Dr Steere and the Lyme Disease controversy in the Sunday Magazine on 6/17/01.
I am a chronic Lyme sufferer, infected in northern Westchester. Sadly, I am still infected with this disease after many years. This is a fact: I have had several positive cultures for the Lyme bacteria over several years (from 3 different labs).
Of course my Dr. is concerned about my well being, he monitors my treatment and health carefully. Hence the cultures and tests for many other things.
As a patient with a chronic poorly-understood illness, I have been forced to learn about it so I can participate in my treatment. I am aware of quite a few published scientific studies demonstating chronic infection with the Lyme spirochete.
Having read several dozen studies, including those by Dr Steere, I have formed an opinion of Dr Steere.
Dr Steere's papers, while conservative, also tend to be responsible, when read in their entirety. He frequently make summaries that the majority of patients recovered or benefited from a specific regimen.
In his papers, over many years, Dr Steere's preferred treatment lengthens from a few days of antibiotics to a month. And never does he (in writing) claim that this is curative in all patients.
However, Dr Steere's public statements and synopses tend to include the cautions without admiting that his treatments are not perfect. This encourages those who are far more dogmatic than Dr Steere, as well as serving to vilify him to those desperately struggling with a poorly understood disease.
As your article states, medical controversy is nothing new. But the usual patttern is that the one side simply ingores the patients and physicians who take the unpopular side.
While Lupus, Chronic Fatigue Syndrome, Chronic Candida Albicans (yeast) infections and other diseases were dismissed by many Drs as either non-existant or insignificant (and the clinicians willing to be open minded about these things as quacks), there was never a group of Drs who deliberately who spent as much time trying to discredit these syndromes as the group of Drs who seem to be trying to discredit Lyme Disease as a serious illness.
These active Drs have kept alive the concept that infection should be ruled out in favor a hypothetical post Lyme Syndrome, for which there is no evidence or cure. These Physicians, much more so than Lyme Sufferers (and their advocates) are the cause of Dr Steere's uncomfortable situation.
The Centers for Disease Control reports 16,000 reported cases of Lyme Disease in 1999. The total cases reported in the past fews years is 49,000. Since the surveillance criteria are deliberately strict, it is certain that the actual number of sufferers (diagnosed and otherwise) is at least twice this number, perhaps as high as ten times this number.
While the incidence of chronic infection is unknown, it does occur, as my case proves. And treatment helps. While the case against Dr Steere may be slightly exageratted, isn't it unethical for anyone to argue that a Physician should not treat a patient who in her judgment would benefit from treatment?
If *anyone* were to suggest that AIDS sufferers should not be treated, because the available treatments were ineffective, or had side-effects (or any other concern), we would be shocked. Why is it not right to offer the same compassion to those with other illnesses? ''