January 19, 2010 at 2:08 pm #303319KimParticipant
This is copied from one of Maz's posts and, as only she can do, explains the controversy surrounding Lyme so eloquently. Putting it in a separate thread will make it easier for others to “search” in the future.
“This link should explain much of what you need to know about the differences between CDC standard testing for Lyme disease and IGeneX specialised testing for it:
The standard testing for Lyme is surrounded with a tremendous amount of controversy, though mainstream physicians (and patients, too) may not be aware of the debate. There exists, however, an ongoing, heated debate between IDSA (Infectious Disease Society of America) physicians and ILADs (Intl Lyme and Assoc Diseases Society). This debate is largely over inadequate standard testing that misses 50% of Lyme cases (info in link above) and the conflicts of interests that Attorney Gen, Blumenthal, of CT found existing amongst the original authors of the 2006 IDSA Lyme treatment guidelines. The panel of about 14 authors were all found ot have serious conflicts of interests, including consulting for insurance companies who were exceedingly happy to be told Lyme had no chronic form, had vested interests in Lyme testing kits, had been hired for large sums of money as expert witnesses in cases brought against Lyme Literate physcians, had only selected their own research or research that agreed with theirs in drawing up their Lyme treatment guidelines…and I think that's about the long and short of it. Basically, these guys at the IDSA were caught with their pants down and, in an out of court settlement (where they still would not fess up to their indiscretions), they agreed to elect a new panel of Lyme treatment guideline panelists to review the 2006 guidelines, to accept submissions from Physician researchers outside of the IDSA, to hear patient testimonials, and to also to hold a one-day (closed to public) hearing at which certain presenters (selected by them) could speak either for or against the chronic Lyme question. You can watch this day of presentations here to see the vast chasm of opinion between IDSA and ILADs physician/researchers, as well as independent researchers who don't belong to either society.
Most doctors who do know about this controversy, don't want to touch Lyme patients with a bargepole, as they don't want to risk losing their licenses. The few Lyme Literate physicans (LLMDs) who are brave enough to treat chronically sick Lyme patients have been attacked for treating “outside the standard of care,” which is quite an irony, given that the IDSA Lyme treatment guidelines were meant to only be guidelines. However, because insurance companies are taking these guidelines as “the” standard of care and there is such heated debate surrounding chronic Lyme, LLMDs stand out like the bulls-eye targets they are trying to treat.
Essentially, inasmuch as this can be squeezed into a nutshell, this is why the standard Lyme tests are not trusted. You will note in the above link that Dr A S was on the Dearbourne committee who dictated which bands should be in or out of the standard Lyme tests. This guy goes right back to when Lyme was first uncovered by Polly Murray, a housewife in CT, in the mid-70s, when she reported an unusually large cluster of people in her area who had JRA, RA, Lupus (she herself had Lupus symptoms) and other chronic AI problems. Dr S, at Yale, thought it was a virus and one of the top pediatric LLMDs (Dr C. R-J also in New Haven) was treating kids with antibiotics and they were getting well again. This caused quite a rucous between these two docs and a longstanding rivarly that eventually got Dr. C R-J hauled into the courts in recent years. Dr S is still considered to be one of the top IDSA specialists on Lyme! Not only this, his nose was pushed out of joint when Willy Burgdorfer came along and actually discovered that the offending organism was a spirochetal bacterium, not a virus, at all! Pam Weintraub documents all this in her book, “Cure Unknown,” if you're interested. It's a great read and you won't looka t Lyme in quite the same way again afterwards. I guess the last kidk in the teeth to Dr S was when the spirochete was named after Willy Burgdorfer (Borrelia burgdorferi), as he felt he was the original discoverer of Lyme, having been called in by the CT Dept of Health to research the cluster of sick folk in his state. This site documents quite a bit of the history of “Lyme Crimes” if you want to digest a bit more:”January 22, 2010 at 12:03 am #339674MazKeymaster
Kim, thanks for posting this as it is oft repeated material and saves others hearing me bleeting on, over and over. Thanks! 🙂
I thought it would also be helpful to add the following link to this thread, as Dr H, a well known LLMD speaks about the inadequacies of Lyme testing and also goes into why** some of the test bands were removed from the standard tests and never put back, amongst a number of other interesting things. It a panel interview that was filmed on April 27th, 2008, around the time that the Lyme documentary, Under our Skin, was premiered. It's very worth the time to watch for anyone interested in the Lyme controversy. Amy Tan, author of The Joy Luck Club, and Lyme suffer/advocate is also on the panel, along with the movie's producer, Andy Abrahams Wilson.
Note: ** As Dr H explains in the video: Bands 31 an 34 were antibody bands that were removed from standard Lyme tests during the creation of the LymeRix vaccine so that those vaccinated would not cross-react with standard tests later on. However, the vaccine was withdrawn from the market when many LtmeRix recipients (particularly those with HLA genetic halotypes) were becoming seriously ill and with autoimmune problems. Although considered to be highly specific to Lyme…specific enough to create a vaccine…when the vaccination was withdrawn due to these horrible reactions, Bands 31 and 34 were never replaced back on the standard tests. As such, many of the sickest patients with Lyme and autoimmune problems are being missed on standard testing. One of the arguments used for not putting these bands back in the standard test is that they were “not statistically” significant, as not many people tested positive on these bands anyway. Kind of ironic that these bands are considered “statistically insignificant” but the people who do test positive on them (through specialty labs, like IGeneX), also happen to be the ones with autoimmune manifestations of Lyme and, therefore, less likely to test CDC positive on standard tests.
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