Hi Lysha and Rhonda,
Even the CDC says Lyme should be a clinical diagnosis because there are no FDA-approved tests that have a high enough degree of accuracy to be used for absolute diagnostic purposes.
The ELISA test is virtually worthless in chronic Lyme cases. It gives more false negatives than any other.
The Igenex lab in Palo Alto does give positive (and later proven accurate) results for Lyme when other tests do not in some cases. Also, sometimes Lyme Western Blot results get misinterpreted because doctors don't apply the proper standards for the patient's situation. It is estimated there are over 300 strains of Lyme. Since most of the tests only check for antibodies to a very small number of those, and your body can stop producing antibodies over time, the test results are much more likely to be false negative than they are false positive especially if they are interpreted according to standards designed around different strains than you have. My doctor interpreted my Western Blot results as positive although some doctors would not have.
There is a test done by the Bowen Lab in Florida that tests for the bacteria themselves. The process is basically the same concept applied to E-Coli detection---fluorescing the bacteria using a serial dilution process to determine your numeric level of infection. It is still pending FDA approval, but it has been patented. I live in Missouri, very near Lysha, and this is the ONLY test that showed me 100% positive for Lyme.
I know the Lyme diagnosis was correct for me because of my response to the antibiotics and my pattern of symptoms over the years since I was bit by a common dog tick in Kansas when I was 7 years old. My idea of camping is staying at the Hilton.
As for the statement regarding the type of tick that can cause Lyme, that is one of the most common misconceptions. I think it stems from the fact that that was the type of tick that Lyme was first found in in the 1970's in the U.S.. Also, because Lyme has not received lots of media attention and funding like some other diseases, much has yet to be discovered and understood about
it. Lyme has been proven in university studies to be transmitted by other types of ticks besides deer ticks including the common dog tick in the Midwest and the Lone Star tick in Texas and Oklahoma. You also do not necessarily have to have had a bullseye rash or flu-like symptoms like the media commonly says.
The risk of being treated for MS if you really have Lyme is two-fold as I see it: 1) Steroids are sometimes used to treat MS, and in people who actually have Lyme, their adrenal systems may not be able to recover when the steroids are stopped. The Lyme can really take off without the opposition of a healthy immune system. I have read this and experienced it personally when my adult-onset "asthma" (which was actually Lyme) was treated with prednisone. 2) The longer Lyme goes untreated the more it can affect your health and the longer and harder it can be to recover from.
There are two new people on the Lyme board who were previously misdiagnosed with MS, and I personally know of two other Lyme people who were misdiagnosed with MS and one who was misdiagnosed with ALS. Those last three people were all in wheelchairs and can now walk.
If you would like more info on the Bowen Lyme test, please post on the Lyme board and I'll be happy to provide it.
Post Edited (KCLyme) : 7/29/2006 11:22:19 PM (GMT-6)