LLMD stands for Lyme-Literate Medical Doctor. Any kind of licensed medical doctor can be called an LLMD. They don’t all belong to the same medical specialty.
Earning the unofficial LLMD designation comes with practicing medicine according to the diagnostic and treatment guidelines of the International Lyme and Associated Diseases Society (or ILADS).
There are also LLNDs, which is Lyme-Literate Naturopathic Doctors, for people with Lyme who chose to go that treatment route.
Why is it important to see an LLMD?
It’s natural to think that any medical doctor should be able to diagnose and treat Lyme disease. Or at least refer you to a doctor who can. But unfortunately Lyme diagnosis and treatment is a political hot potato, at least in the United States.
One group, the Infectious Diseases Society of America, believes Lyme can be treated with 2 weeks of antibiotics. If you have symptoms after that, you have something they call Post Lyme Syndrome, read as “it’s psychological; you still can’t have Lyme”
ILADS, on the other hand, recognizes the complexity of Lyme and the associated co-infections that also come with it.
Guess whose guidelines most regular doctors follow? Most hospital Emergency Rooms follow? And most medical insurance companies follow?
You can download and read both the ILADS and IDSA guidelines here.
Many doctors know little or nothing about Lyme. If you present with symptoms that they know, they’ll test, diagnose, and treat for that. If your tests come back negative, they’re clueless what to do next (but that usually doesn’t stop them from giving you some other medication to try). You could be in for a long, expensive, frustrating journey of misdiagnoses and mistreatments. It’s a sad story that’s happened to thousands of people with Lyme.
If you think you might have Lyme, whether or not you remember a tick bite, and you want your symptoms taken seriously, you should see an LLMD.
How to find an LLMD
It would be great if there were public lists of LLMDs … but there aren’t unfortunately. Most LLMDs try to keep a low profile because some of them have been reported to their respective state medical license boards for the “unorthodox” long-term use of antibiotics to treat Lyme. Some have been heavily fined. A few have lost their licenses to practice medicine and have had to move to other states.
So you won’t find any public online Lyme forums where you can ask for or talk about Lyme doctors by name. Instead you have to ask for LLMD names for where you live and forum members will private message you with the information.
We provide that service here too.
If you’d like to find an LLMD near you, just leave a request as a comment below and we’ll send you information on how to find one.
Please take your symptoms seriously if you think you have Lyme. Treated early, you can get rid of it. But once it becomes chronic (or persistent, as they call it), it can cause you months, if not years, of trouble.
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14. January 2013 at 3:19 pm
I was looking for a LLMD in the Boston area – we live in Norfolk (02056) but will travel to Boston to see the best if needed
16. March 2013 at 3:05 pm
Michael, I’m sending you Boston Lyme info. Thanks for asking.
14. January 2013 at 11:39 am
Central Ohio Area
Need a doctor for family member
lyme test not high enough
but markers for flagella—
and markers for another
16. March 2013 at 2:46 pm
I’m sending you OH Lyme info MJ. Many people with Lyme can have few or no markers; the tests are not reliable. Thanks for asking.
6. January 2013 at 4:03 pm
Can you please send me a Lyme disease specialist in south Florida?
Thanks,
Andrea
13. January 2013 at 11:43 am
FL Lyme info is on its way, Andrea. Thanks for asking.
17. December 2012 at 11:30 am
Hi, I am looking for a LLMD in the denver area. I would drive farther as well. I am also looking for a psychiatrist that understands lyme and the subsequent psychiatric symptoms. Thank-you!
31. December 2012 at 8:27 am
I’m sending you CO Lyme info, Krista. You can ask Lyme support groups there about LLMDs and psychiatrists who understand Lyme-induced psychiatric problems. Thanks for asking.
11. December 2012 at 9:27 am
Could you please send me a list of LLMDs in Northern Virginia? Thanks.
31. December 2012 at 7:25 am
VA Lyme info is being sent ASAP. Thanks for asking, Michelle.
5. December 2012 at 8:26 am
I have suffered with the same symptoms listed in many of the blog posts since 1989 after having flu-like symptoms. Could you please send me a list of doctors in the Columbus, OH area.
5. December 2012 at 1:26 pm
OH Lyme info coming up, Carol. Thanks for asking.
26. December 2012 at 7:12 pm
Please email me a list of LLMD physicians in Minnesota. Do I need a referral from PCP to see one? My PCP is hesitated.
Thanks
31. December 2012 at 8:41 am
Your insurance company may say you need a referral from your PCP. But you can go on your own and pay out of pocket. Unfortunately most Lyme doctors don’t take insurance anyway. I’m sending you MN Lyme info so you can find and LLLMD. If you have Lyme, it’s not something that will go away by itself. And the longer you have it, the worse you’ll feel and the harder it will take to get rid of it. Thanks for asking, Candace.
26. November 2012 at 10:33 am
Hi
Im looking for a LLMD in Massachusetts. I live in Cambridge and have a car so a list of doctor choices at an extended radius is accessible to me. But if there are some within the immediate Boston area, that’d be great.
Thanks!
Stephen
1. December 2012 at 2:09 pm
Boston-area Lyme info is being sent shortly. Thanks for asking, Stephen.
9. November 2012 at 11:50 pm
Finding your site is like a ray of hope. I live south of Lees Summit, Missouri, right outside of Kansas City, Missouri. I need to find a LLMD, please. Thank you.
16. November 2012 at 1:33 pm
KS/MO Lyme info should arrive soon, Lisa. Glad to help. Thanks for asking.
3. January 2013 at 11:05 pm
Kansas city area LLMD please. Was told by my pcp that there was no such thing as lyme… geesh. Need to find a LLMD ASAP! So many THANKS!!
13. January 2013 at 11:41 am
Sheesh! is right. KC area Lyme info is coming up shortly, Chris. Thanks for asking.
9. November 2012 at 8:31 am
can you please send me list of drs in pa i live in poconos pa
16. November 2012 at 1:31 pm
PA Lyme info coming up. Thanks for asking, Eva.
16. November 2012 at 1:43 pm
Eva, the email I sent came back undeliverable. If you can give me another email, I’ll send it again.
5. November 2012 at 6:26 am
I live in Novi, Michigan 48375. Would you please send me a list of LLMD in my area? Thanks so much!
16. November 2012 at 1:28 pm
I’m sending MI Lyme info shortly, Sue. Thanks for asking.
24. October 2012 at 12:06 am
I’ve had neurological symptoms for nine months now. Several MD’s later my latest neurologist is basically saying my symptoms are a result of depression. I never had any mental illness issues until being sick every day for six months and no one being able to tell me what is wrong with me. I’ve had the western blot test (all bands negative). Should I have a different test? See a LLMD? At this point I would love to be diagnosed with anything, as bad as that sounds. I live in Ventura County in Southern California.
31. October 2012 at 2:03 pm
Tim, there’s lots of Lyme in SoCal. I’m sending you info so you can consult an LLMD. Most Lyme doctors use the IGeneX test (a private lab in Palo Alto), although no Lyme test is 100% accurate. Thanks for asking. Oh, and your symptoms are probably not caused by depression, although you may indeed be depressed from having them.
21. October 2012 at 1:16 pm
I live in southern nj ,just outside of Philly . In need of doctor
Thanks
31. October 2012 at 1:41 pm
NJ Lyme info coming up, Athen. Thanks for asking.