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
waysboth 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 testshaving 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 quantityamount 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
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
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.)
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).
Site most recently modified: January 10, 2008