Here is a slightly edited version of a message I just sent to someone looking for a Lyme specialist (LLMD) in a particular geographic area, in case someone else has the same question:
Because LLMDs are subject to harrassment by local/state medical boards, they keep a low profile in most places, and in some states, they can have their medical licenses pulled. So they seldom identify themselves as Lyme specialists, and never call themselves LLMDs (it's patient slang).
As a consequence, there are some odd ducks out there with (to my mind) some very fringe ideas about treatment, so you'll have to use your judgment and maybe switch to less fringe-y doc if it seems to be going that way.
I just googled:
-- llmd [insert here name of your city or state or area -- you may need to try a few different searches to focus on different geographic areas, such as searching first LLMD Boston, and then LLMD Massachusetts, and then LLMD Connecticut] --
and I got a bunch of hits, mostly at other websites where people have asked the same question. It's a start. Then once you have some names, you can search each name and see what reviews the doc gets.
There are also websites with referral functions. truthaboutlymedisease [dot] com is one. At the home page, click on 'resources' at the top, and then at the bottom of that page is a link for referrals. I don't know what database they are working off of, and it may be good or not.
You can also go to ILADS [dot] org, the main voluntary association for LLMDs. I don't know that they have a referral function, but some snooping around there might find you some names. If a doc is an ILADS member, that's a good sign in my book.
If there is a local or state Lyme association in your area, that's a good place to try also.
If in the NYC area, there is the Columbia U Lyme research group headed by Brian Fallon. It is purely research, as far as I know, but you may find some hints to docs in your area, dunno. Search -- columbia university lyme -- and the first hit is the website.
Also try posting on websites like this one with a new message saying "Seeking LLMD in [your city and state] area". That may get you some leads.
But the important next step is always to keep your antennae up for whether the doc's approach makes sense to you. Because it is cutting edge medicine, and because mainstream medicine holds LLMDs in such contempt, there are a number of flaky docs out there that I wouldn't let treat my pet canary. You should educate yourself about Lyme and its coinfections, the tests and treatments, so that you can judge whether you are seeing a quack. Not only are we ill, but we have to fend for ourselves against a too-often hostile medical profession and the odd quack who says just a lot of vitamins will fix you up fast.
We are on the frontiers of medicine, and that is the second unpleasant realization we come to, after realizing we are in fact sick, really really sick. But don't be discouraged -- I did what you are doing -- find an LLMD, and plow ahead. It's worth it, absolutely.
This is all really good advice. I especially agree that it is never a good idea to broadcast so-called "LLMDs" names on sites such as this; as it could have unintended consequences on the doctor and therefore, their patients as well!
If you find a member on this site from a nearby location, you can communicate via the MH messaging system--No need to even use personal emails.
I also agree that while you may be able to acquire a list of LLMD's with a minimal amount of hunting around online, it is far and away better to also know a bit about the treatment styles, and to seek patient evaluations of the doc. It is more difficult to search for and find such info, but keep in mind that there are a lot of live or online patient groups around, and many Lyme patients feel passionately about trying to help those in need of a diagnosis/doctor. Help is out there! If you can't personally manage all of the investigative work, try getting a family member or friend to help you out.
It is true that many so-called LLMDs do not work through insurance. This is because, at least in part, they operate outside of government agency guidelines for treatment. Each person needs to determine for themselves how to handle the financial burden of being sick, and of course that is often a difficult decision. For me personally, I lost the ability to work full time and felt that my ability to work at all would soon disappear if I didn't get help, so the cost of my doctor was worth it to me in the long run.
I agree wholeheartedly that in the predicament of chronic Lyme/tick borne infection, the patient MUST take matters into their own hands in order to get a diagnosis or adequate treatment. Personally, I know that I would never have gotten this diagnosis or this form of treatment from my "normal" GP or any of the medical specialists (neuro, rheumy, etc.) I went through during my illness.
I do think mainstream medicine has a place in the diagnosis process. I believe it is advice given in the book "Cure Unknown" by P. Weintraub, and it is certainly advice in which I believe, to rule out any other differential diagnosis before (or simultaneous) to seeking an LLMD. So seeking an LLMD is not to replace all of the other tests and specialists you may encounter. Instead, an LLMD is an alternative once mainstream medical options have been exhausted.
Again, a lot of personal choice and personal action goes into diagnosing/treating persistent chronic tick borne infection. In our culture we don't normally think of so much burden falling upon the patient, but as JackieCalifornia notes we're at the "frontier" so the normal rules don't always apply.
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