LC and Lyme

[C.U.B. girl]

Very interesting, this thread... Two of my three sisters both have Lyme; myself and the Lyme-free sister both have celiac; she also has ulcerative colitis and I have CC. Our grandmother contracted ALS when she was about 80 years old and died from it at the age of 83. I had the western blot test run to check for Lyme; it came back negative on all bands, however, as a previous poster mentioned, false negatives happen quite frequently. Both sisters with Lyme (one lives in FL and one in GA, so yes, Lyme does exist in the southeast, despite what doctors will tell you) are really struggling with it. The one in GA has been to doctors in Atlanta, North Carolina, and now travels to a llmd in Orlando, FL about every six weeks. The one in FL also goes to him. They are both on natural therapies that are supporting health while trying to deal with the co infections and treating the Lyme, and oh my gosh, it has been a HUGE battle for both of them! The worst part is dealing with other medical practitioners, which one must do from time to time, who have no clue whatsoever about Lyme, and believe whatever the CDC and the dept. of health tell them (i.e., Lyme doesn't exist outside the northeast, or below the Mason-Dixon line, or you can only get it from a deer tick, or you have to have had the bulls-eye rash, or a couple of weeks of antibiotics will get rid of it --- none of which is true). Both sisters lived for years with chronic health issues, which went either undiagnosed or misdiagnosed; the eldest sister finally ended up at the Mayo Clinic in Jacksonville, where she was finally diagnosed with Lyme. The more our family learns about Lyme and it's co-infections, the more we are all convinced that Lyme disease is probably at the root of the chronic illnesses of hundreds of thousands of patients. Of course, both sisters have been counseled to go gluten-free, because Lyme patients seem to do better on a GF diet.

We have several theories about why doctors don't test for Lyme more often, but the bottom line is that until they do, more and more people are going to be suffering from unspecified chronic illnesses, and dying from them, when the root cause may well be Lyme disease. Any chronic illness that doesn't seem to improve with treatment deserves a closer look; we need to be our own advocates and insist that the doctor test for Lyme, even if they are resistant to the idea. And it does make a difference which test they run, and which lab is used. Lyme disease often "hides", and it may take prior treatment with a couple of weeks of antibiotics to rouse it out of hiding so that it can be detected in a blood test. Be proactive, be persistent, and be prepared to travel long distances for treatment, which your insurance probably won't cover......

[kristinef]

I watched the film Under Our Skin on Netflix. It is about Lyme disease and is disturbing on many levels.

www.underourskin.com