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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21. February 2012 at 11:55 pm
Could you please refer me to a LLMD in the San Diego, CA (92065 zip code)area?
Thank You,
Janet
22. February 2012 at 7:02 am
Janet, SoCal info coming up for you. Thanks for asking.
21. February 2012 at 9:58 pm
Can you forward me any information on LLMD’s in the Scranton/Wilkes-Barre, PA area. It is located in northeastern pennsylvania – I am willing to travel. I’ve been looking for a doctor to treat my lyme condition, but with little success. My condition is quite chronic. Any help would be greatly welcome.
Thank you
Thomas W
22. February 2012 at 6:58 am
Thomas, I’m sending PA Lyme info shortly. Thanks for asking
21. February 2012 at 9:17 pm
Need a LLMD in Southeastern Wisconsin
22. February 2012 at 6:50 am
WI Lyme info coming your way, Lisa. Thanks for asking.
21. February 2012 at 9:09 pm
I would like to see an LLMD in W.va or Ohio. Thanks
22. February 2012 at 6:48 am
Carolyn, WV/OH Lyme info coming up. Thanks for asking.
21. February 2012 at 12:26 pm
I live in Montana but would welcome the name of a LLMD in the Northwest.
Thanks
21. February 2012 at 4:53 pm
Pam, I’m sending Montana Lyme info. Hopefully you’ll be able to find a Lyme-literate doctor there. Thanks for asking.
21. February 2012 at 12:18 am
Can you please refer me to an LLMD in the Pemberton/Browns Mills NJ area?
21. February 2012 at 4:47 pm
NJ Lyme info coming up, Chris. Thanks for asking.
20. February 2012 at 5:32 pm
Can you please refer me to an LLMD in the Dunedin/Clearwater FL area?
I have had these symptoms without a diagnosis for about 3-4 months now. This explains a lot. I thought I was losing my mind! Thank you!
20. February 2012 at 7:55 pm
You’re not crazy, Debbie. FL Lyme info is on the way. Thanks for asking.