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What is an "LLMD" ('Lyme-literate Medical Doctor') -- ?

There is much understandable confusion among patients about the term "LLMD", which is short for 'Lyme-literate Medical Doctor', so I thought I'd post a short explanation for anyone interested.  Others should feel free to chime in too.

Lyme disease is a bacterial infection, carried by the bite of a tiny tick which is much, much smaller than a dog tick.  Many of us never saw the tick that bit us (including me), so if you didn't see the tick that bit you (or got a common circular red rash that the Lyme tick bite can cause), it DOESN'T mean you do NOT have Lyme.

(I never saw a tick on me or had a rash, and I know others who had the same experience.  Too many docs, however, tend to discount the likelihood of a Lyme infection if you saw no tick or 'bullseye'-shaped rash.  I'd find a new doc if you're not taken seriously about how you feel.  And there is not one single set of symptoms -- everyone is different, partly due to differences in your body chemistry and immune system and partly due to what other infections the 'Lyme' ticks were also carrying.)

"LLMD" is NOT a degree; it is simply patient slang for "Lyme-literate medical doctor", meaning an MD who understands Lyme disease as something serious and potentially difficult to cure.  When graduating from medical school, the graduate takes a licensing exam from his/her state, and if successful, has a license to practice medicine in that state.  Kind of like getting a driver's license.  :)

So all LLMDs are already MDs, and there is no test given to then become an LLMD.  Any MD can practice in the field of Lyme, but there are a few types of docs who are often found specializing in Lyme disease, because the interests, training and experience those particular docs already have naturally lead them to encounter patients who have Lyme:  internal medicine docs, immunologists, and some others, including general practitioners, are often found to venture into treating Lyme and other tickborne illnesses.  

(Oddly enough, the docs who should be most up-to-date on Lyme are sometimes those who most loudly claim that Lyme is rare, hard to get and easy to cure with a couple weeks of doxycycline, and never mind the co-infections the 'Lyme' ticks also carry about half the time along with Lyme.  These docs who should be on top of the Lyme situation (but too often are not) can sometimes be found among infectious disease MDs, rheumatologists, and some others.  [Saw a few of those myself before getting a diagnosis.]  On the other hand, ophthalmologists [MDs who specialize in eyes] are very aware of Lyme and take it seriously.  How confusing for the patients!)

If you ask an MD, "Are you an LLMD?", you will most likely be told, "No."  A physician is an MD (Doctor of Medicine), but there is no school or program that grants the "LLMD" title to anyone, whether an MD or not.  The result for patients is that it can be very difficult to know if we have found the 'right' kind of MD to help us get well.  (How annoying!)  

And frankly, if I found an MD who was telling people s/he is "an LLMD", I would go the other way, because it is misleading and tells me the doc may not be entirely honest.  A proper answer in my mind would be for the doc to reply, "Well, I am an MD, a medical doctor, and I specialize in [immunology], with a particular interest in Lyme disease and other tickborne infections."

If the MD is a member of ILADS (International Lyme and Associated Diseases Society), then that is a good sign in my view, because the principles a good LLMD uses are often very close to the guidelines put forth by ILADS on their website, ... BUT it is not a foolproof indicator of an LLMD.  

(ILADS has a set of treatment guidelines and other literature posted on their website and updated over the years -- it is interesting stuff, but highly technical and aimed mainly at MDs -- but if you are interested, take a look.  These 'guidelines' were begun by a Dr Burrascano, so you might see references in various places to 'Dr Burrascano's Guidelines', and that would the place to read.  Don't get overwhelmed by it though; sometimes Lyme messes with the ability to read and absorb complex information -- but that will get better with treatment.)

Part of the overall problem is that Lyme is still a bit of a mystery to the medical community, so there are MDs who are trying new things to understand and cure Lyme that not all MDs would agree with or think worthwhile.  Here is where the uncertainties of having an emerging disease come in.

          -->       What to do?  Ask around and also search online for your LLMD before deciding to let him/her treat you.  See if you can find people in patient groups or websites who would tell you their experience with a particular doc (in private chat is always better, so as not to slander or 'out' the doc in public).  If you get a shrug of the shoulders from a doc's patient instead of a 'Yeah, she is really good', then that tells you something.  

Looking for an LLMD is like looking for a good restaurant:  you can read the reviews, see if they are a member of the Culinary Institute (= ILADS), ask around, look on message boards, and then go try it.  If it works out, good; if not, look for another restaurant (or doc).

All the sneaking around and *not* publishing LLMD's names on websites is because there is a war going on in the medical field.  Newly emerging diseases often go through a phase like this -- it happened with AIDS in the early 1980s -- and Lyme disease is still struggling to get recognition at that level.  

In the meantime, hang on and plow ahead -- Lyme is treatable and curable, and someday it will be eradicated.  Fight on!
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