Finding a Good Lyme Doc
Even our CDC acknowledges 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 for the presence of Lyme. They are simply too inaccurate both ways—with both 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 into the deep tissues where it’s damage becomes permanent. Moreover, although the reasons are a bit technical, the very worst of the infections always tends to test negative.
Time is of the essence when it comes to a lyme diagnosis.
The prime purpose for my including the various 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 lyme symptoms, or in this absence, to be able to discount the likelihood of lyme.
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, or even days or hours. 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. However, if delays intervene by failing to find a good doc, or failure to find a proper diagnosis, or failure to have 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 three suggestions for this:
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. I may begin to compile a list of national support groups. Contact us if you’d like your group to be included
For a long time, I’ve been open to compiling here a list of doctor references by geographic region. The issues are a bit complex, and although I wrote twenty years ago that “perhaps the time to do so has come”, it is clear in all that period since that it still has not. Doctors continue to be violently opposed and manipulated out of practice. Notwithstanding, if anyone practitioner desires to share their information, either by private or public dissemination through this site, please give me a contact.
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, as of this writing some time ago, they were unable to give referrals over the phone.
Early on in this quest, when the Internet still consisted largely of “newsgroups”, there was an outstanding resource called Sci.Med.Diseases.Lyme — one of the early bulletin boards where readers would weigh in with questions, comments, and answers. This still remains out there and has ultimately evolved into a Google Group.
What has also evolved in the intervening twenty years is the abuse of such public forums. In the early days, neither spam nor rampant uncivility was a problem. So, you may need to weed through some less-than-helpful posts now. That being said, you may still consider a “post” here. (Or for that matter, just read some of the latest news.) 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. However, even though this newsgroup is read by people from all over the world (a real plus), it is no longer the definitive single resource it once was.
And expect also that you may find some reluctance to receive these recommendations by return posting at that site. Some of the lyme community is still sensitive to making the information of good docs public. (See The Story of Dr. Bleiweiss.)