posted
I'm wondering if any of you have experience with SUNY stonybrook's neurolyme specialists and if so, what were they? More specifically I'm referring to Dr. Coyle; I know we don't name names here, but since she is well known as a neurologic lyme specialist and writes tons of articles, I don't think it really matters that much.
Posts: 45 | From Stillwater, OK, USA | Registered: Feb 2004
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Mathias
Frequent Contributor (1K+ posts)
Member # 5298
posted
I don't know anything specific about her, but in general I have heard bad things about SUNY Stonybrook.
I've also posted about their labwork and only got negative feedback.
If you need a LL Nuero I would recommend Columbia in NYC.
[This message has been edited by Mathias (edited 09 June 2004).]
Cheryl
Frequent Contributor (1K+ posts)
Member # 75
posted
Hi,
I've known some people who have seen her, and the consensus has been to STAY AWAY.
However, there are neuro Lyme specialists (not at SUNY SB) who are worth seeing. Email me if you'd like help. Is there a specific area you are looking to travel to?
posted
Panther, My husband saw Dr. C at Sony Brook.DO NOT go there!!!! She is a wolf is sheeps clothing and cold hearted at that!! If you would like more info email me at [email protected]. I will tell you of the famous Dr. The truth. Zina
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Posts: 3 | From PA. | Registered: Jun 2004
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posted
Coyle is a factual scientist. Her manner is not warm but she knows what she is talking about. Personally, she has been very helpful to me. I trust her absolutely. Check out her bio and all her books. She is an expert in Lyme and MS both. She is world renown for her expertise. The only reason I can think for why others here may not have liked her is because she tells it like it is and doesn't pull any punches. There ARE "lyme shops" out there who take advantage of desperate people. She is not one of those quacks. Posts: 79 | From Baltimore, MD, USA | Registered: Dec 2003
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Mathias
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posted
LaureenP,
What exactly has she done for you to help you? The more I hear about her, the more I don't like what I hear.
Can you share any details from your experience?
LL neuros are not the easiest people to find.
[This message has been edited by Mathias (edited 07 July 2004).]
posted
This is the impression I got from her initially, at least through reading some of her articles and text passages. However, I have heard some things about her more recently which make me question the initial impression; among them are refusals to provide advanced testing for the CSF of lyme patients, tests which she has cited in research articles in the past as evidence of chronic relapsing lyme, and which are not generally available. She also is prone to neglect mentioning or citing research which emphasizes the neuropsychiatric character of lyme encephalopathy, which to me is almost unforgivable considering an increasing and already fairly large mass of evidence which stresses "atypical" presentations of the disease which result in phenomena including paranoid delusions, schizophrenia-like presentations, depersonalization, hypochondriasis, etc, in other words, phenomena which are seen in other diffuse encephalopathies such as neurosyphillis and adult-onset MLD. Also, your reference to "lyme quacks" may be somewhat valid; I have encountered what I believe to be a quack posing as an LLMD. However, if it weren't for people like Dr. Fallon, I would probably have committed suicide a couple of years back. There are far more quacks on the other side, who take $450 an hour to deny adequate coverage by working for insurance companies; who lie and vacillate and obfuscate the nature of lyme disease (steere, sigal, dattwyler, schoen, shapiro, etc.), all for reasons of intellectual vanity and greed, with no consideration given to patients. Steere, for instance, in a 2002 JAMA article, claimed that SPECT scanning "is not helpful" in the diagnosis of neuroborreliosis, a claim which is at odds with a research paper he co-authored in 1997 which stated not that it was not helpful, but that it "cannot be used alone" to determine the diagnosis - a statement which is true for any known test for LD - including MRI, WB, ELISA, etc. To state that SPECT scanning is not helpful is an absolute lie, and more of an example of his vindictiveness toward other scientists who have accomplished far more for borrelia research than he ever has, he, the incompetent fool who took 7 years post fellowship to become board certified in rheumatology. Moreover, he writes of the CDC surveillance case definition of lyme disease as it were the algorithm to be always used in diagnosing or excluding LD, but never mentions that this is an extremely restrictive definition which is only to be used for research or statistical purposes, not for diagnosing LD in the average patient, which is something which the CDC and FDA acknowledge, but not Steere, who apparently thinks he is God, and doesn't care in the slightest that thousands of doctors all over the country are reading his garbage in periodicals and textbooks and then going out and torturing patients who are already suffering from a vicious illness with their newly acquired ignorance. I note that you failed to include the email option on your account; if you ever happen to pop back in here and read this, feel free to email me and we can discuss some of the malfeasance which has occurred in academia in greater detail.
quote:Originally posted by LaureenP: Coyle is a factual scientist. Her manner is not warm but she knows what she is talking about. Personally, she has been very helpful to me. I trust her absolutely. Check out her bio and all her books. She is an expert in Lyme and MS both. She is world renown for her expertise. The only reason I can think for why others here may not have liked her is because she tells it like it is and doesn't pull any punches. There ARE "lyme shops" out there who take advantage of desperate people. She is not one of those quacks.
Posts: 45 | From Stillwater, OK, USA | Registered: Feb 2004
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Cheryl
Frequent Contributor (1K+ posts)
Member # 75
posted
As a matter of fact, I've consistently heard the same thing from different people I know who have seen her, but who don't know each other. They state that she presents one thing, yet practices differently in the office...to the harm of the patient. That doesn't sound trustworthy to me. Furthermore, some of these people were CDC positive for Lyme and she sent them on their merry way, only to get sicker, in some cases rather dangerously.
I am glad your experience has been different. But me, personally...you couldn't pay me to be treated the way she treats people. Sure, everyone can choose to see whomever they want and we all have different experiences with each doctor. But I tell it like it is and these experiences are legitimate and don't speak well for her.
Cheryl
quote:Originally posted by LaureenP: Coyle is a factual scientist. Her manner is not warm but she knows what she is talking about. Personally, she has been very helpful to me. I trust her absolutely. Check out her bio and all her books. She is an expert in Lyme and MS both. She is world renown for her expertise. The only reason I can think for why others here may not have liked her is because she tells it like it is and doesn't pull any punches. There ARE "lyme shops" out there who take advantage of desperate people. She is not one of those quacks.
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