Finding a Good Lyme Doc
It is well known by even the most "traditional" of doctors that the Lyme diagnosis is one that's done clinically (which is to say, by it's symptoms). The blood tests are well known to be not indicative either way for the presence of Lyme. They are simply too inaccurate both ways—both with false positives (says you have it when you don't) and false negatives (says you don't have it when you really do). The consequences of this latter case is, in fact, the most dangerous result for relying on blood tests—having a doctor tell you categorically that "you do not have lyme", when in reality, the true infection is beginning to go "deep" into the tissues where it's damage becomes permanent. Moreover (although the reasons are technical), the very worst of the infections tends to always test negative.
Time is of the essence when it comes to a lyme diagnosis.
The prime purpose for my including these diagnostics at this site is to give the website reader a couple of tools to begin to answer the question: "Do I have lyme?" By the time one reads through the "quick checklist" and then the longer Bleiweiss essay, he will have a fairly solidified understanding, either recognizing a great many of lyme symptoms, or in this absence, to be able to discount the likelihood of lyme.
At this point of the website, there may be some who are finishing these "diagnostics" and are beginning to wonder about finding a good doctor. (This, I know because this is the bulk of the email I answer.) To these people, and to this question, I dedicate this page.
As I had mentioned above, when lyme is concerned, time is of the essence. The infection can begin to go into the deep tissues within a couple of weeks. And the delay of finding a good doc can make all the difference. If lyme is found quickly, and treated properly, it can be completely cured. If, however, delays intervene by failing to find a good doc, or failure to find a proper diagnosis, or failure to have prescribed the proper treatment (enough quantity—amount and length), then, the likelihood of facing a permanent infection becomes much higher. Above all, do not allow a doc to tell you that a negative blood test is a guarantee that you have no lyme. (Click this link to read the in-depth reasons behind this.)
I can't emphasize strongly enough the importance of finding a doc who is experienced in recognizing and treating lyme (called LLMD's by the lyme community—"Lyme Literate Medical Doctor"). While many more doctors are beginning to understand and recognize the nature of the lyme infection, many are not yet at that point, and you don't want to spend your health on that "educational experience".
The question, however, is how to find an experienced doctor in your particular geographic area. I have two (now three) suggestions for this:
There is an Internet Lyme Support Group on the "newsgroup" (Usenet) portion of the Internet. The specific newsgroup "address" for this group is "Sci.Med.Diseases.Lyme". If you're unsure how to "reach" this newsgroup (It generally uses "newsreader" software), then do the following: (Although first try this link which may work on some machines.)
Either type in or click on the following url for the web location for DejaNews: http://www.dejanews.com. Once you pull up their website, in the place requested, type in the newsgroup name: sci.med.diseases.lyme . This will bring you to the support newsgroup.
At this point, do a "post" here. Type in a little about your symptoms or story; tell the newsgroup what geographical region you desire and ask for a recommendation for a "Lyme-literate" doc in your area. Two points however:
This newsgroup is read by people from all over the world, so the likelihood of getting a recommendation from someone in your area is good. However, realize that not everyone reads that list every day, and you may need to re-post your request if you don't get a reply within a day or so.
Expect that you'll receive these recommendations by email and not by a response posting at that site. Most of the lyme community is sensitive to giving out the names of good docs publically. (See The Story of Dr. Bleiweiss.)
There is a well-respected organization called the Lyme Disease Foundation. They require a written request, and charge a $5 fee for the LLMD referral, but this may be the quickest and most prudent way to go. Here is the process... Write to them at:
Lyme Disease Foundation
1 Financial Plaza, 18th floor
Hartford, CT 06103
In the request, give them your geographic area (so that they may be able give you a referral of a doctor who is closest to you). Also, include a list of your symptoms, so that they might best be able to know what type of doctor to refer you to (Rheumatologlist, Neurologist, Cardiologist, etc.) If you want to telephone them for information, their number is (860) 525-2000, but understand that, at the request of the doctors, they are unable to give referrals over the phone.
Actually, I've come up with a third suggestion: Contact your local lyme support group, and request this information from them. Generally you can get this information quickly, free, and with some good counsel and support in the bargain. Maybe one day soon, I'll begin to compile a list of national support groups. Email me with yours (or your favorites) and I'll list them here.
Finally, I'm considering compiling a list of doctor references by geographic region, and then compiling them by links, here. The issues are a bit complex, but all the reasons for not including them simply don't hold water. While I'm considering this, I'd surely appreciate any feedback on this issue. I'd especially like to hear from any Doctors who either would or would not want to be listed in such a manner (and why).