posted
Does anyone know what the deal is with Dr. Patricia Coyle of StonyBrook?
I mean, just the fact that she is associated with StonyBrook alone makes my hair stand on end.
I just had my fourth EMG/NCV test done and the neuro suggested I see Dr. Coyle as she is "one of the foremost in Lyme disease and MS".
I seem to remember Dr. B. telling me at one visit that she changed her view on chronic Lyme to reflect Bumsteere & Co's.
When I tried to explain to them a little of what is going on in the world of Lyme, they both looked at me like I had two heads and then proceeded to tell me that they guessed it all depended on how you viewed chronic Lyme.
I said yes and that is the problem. One side is right (Dr. B.) and the other side is wrong (Coyle).
I have never in my life been witness to such medical incompetence or just plain ignorance.
Tallahassee, FL is, if not the worst, then one of the WORST places to be if you chronic Lyme (or any chronic illness for that matter).
Everthing for these doctors must fit into their little medical books or else you are in big trouble.
I have never seen more head scratching and blank looks then I have in the last five years since I first entered this nightmare.
With few exceptions, I really think that this is the place to practice when one is at the bottom of their class.
Hallelujah, holy crap and please pass the Tylenol!
Posts: 27 | From Tallahassee, FL | Registered: Nov 2007
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posted
Pass on the Coyle and go straight to Seeking a Doctor so you can find a real LLMD. There are few options in FL, but you have some.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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This explains a bit about the lay of the land and why it's vital to know - up front - a doctor's education (about lyme) and their professional affiliations before even scheduling with them:
CONTROVERSY CONTINUES TO FUEL THE "LYME WAR" - By Virginia Savely, RN, FNP-C
As two medical societies battle over its diagnosis and treatment, Lyme disease remains a frequently missed illness. Here is how to spot and treat it.
Excerpts:
Meet the players
The opponents in the battle over the diagnosis and treatment of Lyme disease are the Infectious Diseases Society of America (IDSA), the largest national organization of general infectious disease specialists, (and)
and the International Lyme and Associated Diseases Society (ILADS), an organization made up of physicians from many specialties. ( www.ilads.org )
ILADS, by contrast, asserts that the illness is much more common than reported, underdiagnosed, easier to contract than previously believed, difficult to diagnose through commercial blood tests, and difficult to treat, (especially)
especially when treatment is delayed because of commonly encountered diagnostic difficulties ( http://www.ilads.org/guidelines.html - Accessed April 6, 2007).
. . .
" . . .To treat Lyme disease for a comparable number of life cycles, treatment would need to last 30 weeks. . . ."
`` . . .Patients with Lyme disease almost always have negative results on standard blood screening tests and have no remarkable findings on physical exam, so they are frequently referred to mental-health professionals for evaluation.
"...If all cases were detected and treated in the early stages of Lyme disease, the debate over the diagnosis and treatment of late-stage disease would not be an issue, and devastating rheumatologic, neurologic, and cardiac complications could be avoided..."
. . . * Clinicians do not realize that the CDC has gone on record as saying the commercial Lyme tests are designed for epidemiologic rather than diagnostic purposes, and a diagnosis should be based on clinical presentation rather than serologic results.
- Full article at link above, containing MUCH more detailed information.
-===
Co-infections (other tick-borne infections or TBD - tick-borne disease) are not discussed in the Savely article due to space limits. Still, any LLMD you would see would know how to assess/treat if others are present.
==========================
AFTER reading the Savely article above this will make more sense and, sadly, shows the state of treatment:
Attorney General Richard Blumenthal today announced that his antitrust investigation has uncovered serious flaws in the Infectious Diseases Society of America's (IDSA) process for writing its 2006 Lyme disease guidelines and the IDSA has agreed to reassess them with the assistance of an outside arbiter.
You should also be evaluated for coinfections. Not all tests are great in that regard, either, but a good LLMD can evaluate you and then guide you in testing. One of the top labs is:
posted
Coyle was an author of the IDSA lyme guidelines, a previous version. She is not in private practice, nor does she treat chronic lyme. She is a published university researcher.
I think the rules about posting doc names apply to doctors who treat lyme. So, maybe this is not an infraction of the lymenet rules?
Don't think an appt with her would be useful. I was scheduled to have some neuro testing done locally but found out that the neuro had trained under Coyle, so I went elsewhere. The nerve conduction and other testing presumably could be done by any qualified neurologist: it is the interpretation of the results that would reflect the bias, if any, of the tester. And do you want that kind of thing in your medical records?
Posts: 8430 | From Not available | Registered: Oct 2000
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quote:Originally posted by lou: And do you want that kind of thing in your medical records? [/QB]
That's the question!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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lou,
Oh. Thanks for the clarification.
As a published author, discussion of her writing seem appropriate, indeed.
Lou, you also bring up a good point. As we ask about professional affiliations (IDSA or ILADS) and other stuff - it's also helpful to find out just who had been a mentor for a doctor we are to see.
From whose works have they learned? Who are the top researchers/specialists in their eyes?
And - when we go to doctors who are not tops in the field - what is put in our charts can harm us for a very long time.
posted
This reply is to Keebler regarding my post about Patricia Coyle.
I am well aware of the rules regarding mentioning a doctors name and so I knew it was okay to mention Dr. Coyle's, as those rules only apply to private practice physicians.
I already have an LLMD. Dr. M. in NYC. He was the one who ordered me to see a neuro for some testing.
I happen to live in an area where ignorance about chronic Lyme disease is rampant and has cost me the ability to walk.
Trying to find a specialist such as a neuro who is Lyme literate or Lyme friendly is IMPOSSIBLE and so you kind of have to take what you get.
I could not afford to go out of town (more like out of state)to find a more Lyme friendly neuro and that is exactly what I would have to do.
I refuse to stop trying to educate the medical community here, regardless of how they look at me or what they put in my file (which as you must know, I am entitled to).
And doctor's have to be very careful about what they put in a patient's file lest they be sued.
It works both ways.
If more people were concerned with the long term consequences of not opening up their mouths and standing up to these doctors, then maybe I would not be crippled today.
I don't blame the doctors for not knowing what they aren't taught. But, I do blame them for not listening to me and then writing me off.
Furthermore, I was not trying to change the doctors mind in one visit.
I simply gave him some information that would maybe, just maybe, plant a seed in his mind.
And who knows...maybe he'll look at the next patient differently.
Besides it was totally effortless on my part as I had to be there anyway.
Kind of like killing two birds with one stone.
But you're right. We do have to do a lot of homework.
Thanks to me and my big mouth, there are many more people in this area who from watching what I have been through, are now armed with the knowledge about Lyme disease that I wish I had had.
What local support group? The Tallahassee group, as far as I know, was disbanded almost a year ago.
I was a member.
I know all about private messaging as well. Have even used it a few times.
But, since it wasn't a private message...
P.S. The Tylenol remark was a joke.
Posts: 27 | From Tallahassee, FL | Registered: Nov 2007
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posted
My understanding from American friends who have been around for a long time is that Patricia Coyle originally published useful research, some of which may have supported themes like seronegativity in chronic Lyme, but some years ago she abruptly changed her views and today is firmly in the Steere camp.
Elena
-------------------- Justice will be ours. Posts: 786 | From UK | Registered: Oct 2007
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adamm
Unregistered
posted
Yep--a poisoner par excellence. A search of this forum should yield numerous horror stories.
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