Most people advise that those seeking a physician to treat Lyme disease can only be properly treated if the doctor is an "LLMD".
So the seeker assumes that is a specialty and tries to find a "LLMD" specialist. No listings are found.
Or if the patient does find doctors trained to treat Lyme disease properly but they are far away, don't take insurance, or are too expensive to consider, what then?
The acronym "LLMD" should always be translated and explained. Getting people in contact with support groups or other people who are being treated for Lyme disease in the area should always be included.
"LLMD" or Lyme Literate Medical Doctor is a term invented 20 or 30 years ago - not by doctors, but by a patient or a support group person. Not a medical specialty. That should be made clear.
[ 07-09-2019, 10:35 AM: Message edited by: Ann-Ohio ]
Posted by Keebler (Member # 12673) on :
- Important points that are - maybe not always - though usually explained when someone new asks how finally find a doctor who knows what they need to know.
& what "Lyme Literate" means regarding a doctor who understands the science of lyme and other tick-borne infections
as well as having an understanding of the range of topics discussed over the years at conferences such as ILADS convenes.
A doctor need not be a member of ILADS yet it is important to know about the kinds of work ILADS undertakes & shares - in order to understand the science of it all.
It's about a level of understanding. As Ann emphasizes, the term "LLMD" is NOT going to be in any insurance / doctor "finder" list or even used in our typical doctor / medical offices.
It helps to understand the politics of why that is. the documentary "Under Our Skin" is excellent in explaining.
"LL" is an informal way of trying to determine just who can and cannot help us based upon their knowledge base / skill set or even "rules" of their practice or medical office.
While it's not an official term by any means, it's still important to grasp the idea of "LL" so no one is lead to a doctor who is just not at all able to treat them properly.
And even the best "LL" doctor, whether MD or ND, is not going to be the right doctor for everyone.
Each patient's case / load differs. And each "LL" doctor has their strong suites and places where they are not as strong.
Sadly, though, for anyone with tick-borne disease, gone is the day when just any doctor can help / treat. Sometimes, though, early on, a PCP or GP might be able to help, though, and some patients get lucky or have a strain that might not develop to be so problematic.
"LL" journalist Pamela Weintraub discusses in some of her blog posts more about the different strains.
Note, though, that the true nature and scope of lyme (or any other tick-borne infection) is not taught in medical colleges, other than it being "no big deal" and to be on the lookout for agitated patients and such - and that is of no help to anyone.
--------- Also not lost in such threads, are some discussions on how to work it out so that even if one's GP, PCP, main doctor is not "LL" -- if they might be open to helping in SOME MANNER?
This puts more onus on the patient to learn a lot of science for themselves but, unfortunately, having lyme heaps that responsibility upon the patient anyway.
It's just much easier and better to be able to have a doctor who truly does understand the complexities of the science involved & has the knowledge, wisdom and experience to guide a personalized treatment protocol.
When at all possible, of course. When not, it's vital to know what the doctor knows, though, and what they do not. -
[ 07-08-2019, 05:20 PM: Message edited by: Keebler ]
Posted by Keebler (Member # 12673) on :
- For anyone new to all this, some of the best patient education and advocacy information can be found in the many tabs & links at these top three organizations:
ILADS - International Lyme & Associated Diseases Society
ILADS is a nonprofit, international, multi-disciplinary medical society, dedicated to the diagnosis and appropriate treatment of Lyme and its associated diseases.
ILADS promotes understanding of Lyme through research and education
and strongly supports physicians and other health care professionals dedicated to advancing the standard of care for Lyme and its associated diseases.
Patient education & treatment information; conferences; research, and much more . . . .
[Poster's note: Ideally, any one new to lyme or other tick borne disease would do well to have a doctor who has completed such a course.] -
Posted by Lymetoo (Member # 743) on :
True, Ann.
Thanks for bringing the links up, Keeb.
Posted by Bartenderbonnie (Member # 49177) on :
Agree.
This is really valuable info posted by Keebler.
My concern is the info will be hard to view at a later date under the 'search' function due to the title of the post. Maybe it can be changed to LLMD'S ?
Posted by Ann-Ohio (Member # 44364) on :
I will be glad to change the title, Bonnie.
I agree that a lot of Keebler's info is invaluable.
I still think an explanation of the title "LLMD" should include the fact
that it is not the name of a specialty.
I still think people in pain who cannot reach any "LLMD" doctor or
cannot afford any doctor recommended as an "LLMD"
should be directed to a support group, or to another
patient, a caregiver, or a family willing to help them find a doctor
nearby who does have good experience diagnosing and treating Lyme
disease. The doctor may or may not have been trained as an "LLMD".
Many were harassed and even prosecuted by State Medical boards,
so didn't want to be listed anywhere as specializing in Lyme disease.
though they still treat.
Patients should be directed to the support groups listed on Lymenet -
(though some updating is kinda over-due )
or to many state-wide lyme disease websites, who list support
groups and contact info. TC has great info on her sites. MLDA in
Michigan is superb, as are many , many more.
"Seeking a doctor" is a great resource. I try to communicate with
seekers who are in my area through PM which works well.
Posted by Bartenderbonnie (Member # 49177) on :
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