posted
I've now read three posts on this site that made reference to "LLMDs" who: didn't really know a lot about lyme or lyme treatment, isn't up to date on lyme treatments, and prescribe what a poster tells them to prescribe.
What!?
What exactly is the point, then? Perhpas just a way for those doctors to circumvent low reimbursement rates from insurance companies and get more cash from desperate patients?
No, really... it takes someone an average level of intelligence, a basic background in microbiology and pharmacology, an internet connection, and two hours time become up to date on the latest and greatest treatment methods.
So how, in the name of God, does anyone with a medical degree representing themselves as "lyme literate" not know the latest research, nor what to prescribe patients?
Posts: 200 | From Ohio | Registered: Apr 2016
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posted
I'm sure they all have their biases on what works and what doesn't work.
There is no ONE protocol since one path does not "cure" everyone.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
Ilads does not require certufication so any doc can say they are ilads. I have heard some really awful things so called llmds have done. I have been telling ppl to get a "good" llmd for yrs. To me thst means a lot of time and experience treating lyme. Not reading a book or going to a workshop
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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posted
Very true. We have to be our own advocates when finding an LLMD. We used to tell patients to find at least 3 happy satisfied "customers" of said LLMD before making an appointment.
That's easier said than done.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Ann-Ohio
Frequent Contributor (1K+ posts)
Member # 44364
posted
"Lyme Literate Medical Doctors" is a term somebody patients made up to describe doctors who knew how to treat Lyme disease many many years ago. There is no LLMD certificate. Doctors do not use the term to describe themselves
Ipkayak, you wrote:"Ilads does not require certufication so any doc can say they are ilads." Did you mean to say "LLMD rather than ilads?
ILADS is the International Lyme and Associated Diseases Society. It does educate doctors who are already MD's You can read about them at www.ilads.org. Good people. Lots of good information there.
-------------------- Ann-OH Posts: 1589 | From Ohio | Registered: Aug 2014
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Ann knows.
And in the very early years LLMD is a term we first used to describe someone who wouldn't toss you out on your ear if you said the dirty word "Lyme".
So there are varying levels of "acceptance" as to what makes someone a LLMD or not.
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- ohioperson,
you write: " . . . "LLMDs" who: didn't really know a lot about lyme or lyme treatment . . ."
Then they are not LLMDs. Simply not. Term has been misused.
Some doctors are misleading and determined to "teach the patient a lesson" in that it's no big deal and treatment is quick and easy and if they don't get better, then it's "not lyme" or they want to be sick. That's their approach.
Some patients are too quick to assume any doctor who might treat lyme in the least bit is a LLMD. Just because a doctor says they treat lyme does NOT mean they do.
Some may not intend to be misleading or incompetent. It's just they never learned about this in medical school. They may THINK they do, though as their definition and understanding are very narrow.
Detail below helps explain what that "literate" means. It's up to the patient to do homework before stepping into a doctor's office. And it takes a lot of homework to research the doctor's background, philosophy, training.
Just because a doctor says they treat lyme does not make them actually "literate" in the terms we've come to require. I've made that mistake far too often. In my view, just as with trust, the term "LL" doctor is earned, not lightly used.
And, of course, it goes far beyond just lyme to other tick-borne and other chronic stealth infections as well.
[No, yet that knowledge base presented at ILADS physician training & conferences -- and in papers -- is a vital start whether they are a member or ILADS or not - here's why] -
[ 06-02-2016, 10:06 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- ohioperson,
you also say: " . . . it takes someone an average level of intelligence, a basic background in microbiology and pharmacology, an internet connection, and two hours time become up to date on the latest and greatest treatment methods. . . ." (end quote)
Two hours to become up to date? No, it takes YEARS to learn about lyme. Years.
Borrelia is one of the most complex of infections. Nothing at all like other infections. And when coinfections are combined, it becomes much more complex.
No one is teaching any of this in any medical college.
But, those LLMDs who really shine are usually those who have seen this in real people - often a family member. To read about how it works, and think of treatment is one thing. To see what it does to a human body is quite another and that often tosses all book study out the window.
Those LLMDs who also come up to speed are usually mentored by others who have been treating for years / decades. This mentorship and member communication within the circle of ILADS is very valuable and, I say, essential.
Such doctors must have open communication among themselves in order to be any good to their patients.
This is no place for a "cookbook" approach or assuming that lyme is like any other infection. While not a cookbook approach, still, every good LLMD must know Burrascano's protocol well as a template of sorts - and understand the reasoning within it. Also, be familiar with all of Dr. B's lectures & presentations since that was written.
Every good LLMD will also know well the many steps in the book by a leading LLMD "Why Can't I Get Better?"
Every good LLMD will know the variations that others have employed and have read the books of all the LLMD authors and also know the work of the LL NDs, too.
Each patient differs in many ways and will require different series of protocols with many adjustments over months and years (by the time they typically get to a LLMD, after suffering neglect and abuse by the regular medical establishment).
Becoming a real LLMD requires a variety of methods of education in this area. It's truly a sub-specialty when done right.
And they must step out of the IDSA shadows.
They must have the freedom to practice as they see fit, too. Some doctors who might be interested in maybe - maybe - leaning toward a more hearty treatment approach may not have the freedom to do so, especially if they are in with other doctors in a university or clinic setting ruled by the IDSA.
Some doctors who are covered by insurances also may not have the freedom to treat. -
[ 06-02-2016, 11:09 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Keebler, How does one start to "be familiar with all of Dr. B's lectures & presentations since that was written"? The videos on the ILADS website are $25 each, but I assume there must be other ways of learning...
Posts: 15 | From US | Registered: Apr 2016
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
rands, do a search of the Internet to find videos of Dr. B. and Dr. H. Others have uploaded complete presentations, Q&A sessions, etc.
It is only ILADS presentations that cost money to view the entire session.
Also, if you get on the ILADS mailing list, you will be notified when conferences are taking place and you can often view any speaker in real time (or delayed) during those events. This way you get to hear the entire presentation, see the slides, etc.
I did a quick search this morning and found a few videos for you. Here they are:
(Tells the story from the beginning including the start of the medical controversy. He describes the IDSA stance on lyme and their conflict of interest and the trouble he got into with the state Medical Board and the resolution.)
posted
Thank you, TF, for the links! I'll check these out and do some additional searching as well.
Posts: 15 | From US | Registered: Apr 2016
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- TF,
great links. Thanks.
rands,
I meant that, ideally, any doctor (who says they treat lyme) should know all that - and keep current by attending ILADS conferences, being in communication with other LLMDs, etc.
Still, as it happens, patients pretty much need to be up to warp speed, too, and - yes - that can get expensive and take lots of time and energy. There is much on line and for those materials that cost, often lyme support groups may have some to loan out.
Still, it is best to have a true LLMD who is fully up to speed so you don't have to muddle through it all from the start and can know you will be in good hands WHILE you learn more with them as your guide, not in their place.
Of course, the "ideal" situation is a tall order. Often, it's only through a patient's self education that they can learn HOW to even find a doctor who really knows what they should. -
[ 06-03-2016, 06:43 PM: Message edited by: Keebler ]
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