I have gotten quite a few emails about people suspecting Lyme, and what to do. I thought I would write down my thoughts in one place. Lyme certainly looks a lot like Multiple Sclerosis, and that may be why there is an increase in incidence in the diagnosis of MS. Certainly if you live in one of the official endemic areas (Sidenote: I think it is much higher in the other areas, but because it isn’t tested for, and no one knows about it, than Lyme is not diagnosed. For instance there are rumors of very high incidence of Lyme in Texas, but there is no testing done.) for Lyme I would highly recommend that you get good tests for Lyme, for everyone else I will drop to just a “recommend” to get good tests for Lyme. Since Lyme is the great imitator it can look like a lot of other diseases/syndromes (e.g. Chronic Fatigue, arthritis, MS, ALS, etc.).
- CD-57 test from LabCorp (aka Stricker Panel). While this is not diagnostic for Lyme there is nothing else known to lower your CD-57 killer immune cells. Of course it is also possible to have Lyme without having a low CD-57. What is known is the Lyme seems to kill off the CD-57 cell; but why is not known. Regardless, if you have a low CD-57 than you have Lyme; keep getting tested until you get a positive result.
I have changed my thoughts on the CD-57 since this was originally written. It may still be very valuable but to what extent I am uncertain. I would still consider a low CD-57 indicative of Lyme.
- Get good labwork for Lyme. Normally, doctors/labs only run the CDC criteria for an ELISA/EIA and then follow with a Western Blot if positive. Unfortunately, the ELISA/EIA is garbage, and the Western Blot isn’t always all that great either (and this is the reason I had an incorrect diagnosis for years). Also, for a lot of reasons, the normal labs do not do good testing for Lyme even with the ELISA/EIA & Western Blot. There are two good labs in the United States. The first is IgeneX, and they are almost certainly the best; unfortunately, they do not take insurance so this can easily cost you hundreds of dollars. The other good lab is MDLab. They are the lab I used, and seemed to do a good job even though the Western Blot came back negative (Side Note: they never sent me the band information, just a negative. Positive or negative make the lab send the band information so you can decide for yourself. I suspect that had I looked at the bands they would have been positive; they were just not the classic positive. I had a positive C6 Peptide so it was not necessary). Both labs will send you vials for the blood, and shipping materials for you to return the blood. You will need a doctor to order the tests and someone to draw the blood (note: they will need a centrifuge for a couple of the vials. Instructions come with the kit). For MDLab I recommend getting the Tick Borne Disease Test #420 (this includes quite a few tests for Lyme and coinfections).
- Find a LLMD (Lyme Literate MD). The best way to find one is to join the Yahoo group Lyme-Aid and ask for a referral for your area/state. Lyme is relatively easy to treat if caught very early (i.e. at the time of, or before, the bulls-eye rash; assuming you get the rash). Lyme is very hard to treat once it enters the chronic stage, and it will require that you have a doctor that is skilled in treating the disease.
- Critical reading is Dr. Burrascano’s paper Diagnostic Hints and Treatment Guidelines for Lyme and Other Tick Borne Illnesses. Also a couple of Lyme Websites to familiarize yourself with Lyme.:
International Lyme and Associated Disease Association (ILADS)
Canadian Lyme Disease Association (CanLyme)
Lyme Disease Association (LDA)