http://seranogroup.org/index.php/site/ideas/ Ideas from The Serano Group en jspinhirne@seranogroup.org Copyright 2010 2010-08-25T19:05:47-08:00 http://www.seranogroup.org/index.php/site/entry/good_medical_news._now_what/ http://www.seranogroup.org/index.php/site/entry/good_medical_news._now_what/#When:19:05:47Z There was good medical news yesterday. Let’s take a walk through ME/CFS, XMRV and MS, CCSVI… In 1995, Paolo Zamboni, an Italian surgeon, did not accept common medical answers when his wife was diagnosed with multiple sclerosis. He reviewed the literature instead of relying on current rote guidelines and found promising, yet abandoned theories. One involved iron accumulation in the central nervous system. Zamboni, who specializes in vascular problems, realized that obstruction of blood flow away from the brain could be causing the iron issue. After radiological imaging showed obstruction in his wife’s jugular vein he performed balloon angioplasty—a simple, well-understood procedure— with remarkable results. Her MS symptoms rapidly resolved and did not return. The promise for MS sufferers did not go unnoticed. Chronic cerebrospinal venous insufficiency (CCSVI) appears to be an important, sometimes primary, cause of MS symptoms. Clinics providing surgical correction to CCSVI are being opened in medical tourism sites worldwide. In October, 2009, researchers published a paper demonstrating a correlation between xenotropic murine leukemia virus-related virus (XMRV) and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). They found 67% of ME/CFS suffers were positive for XMRV and only 4% of healthy subjects were positive. Government agencies, particularly the Centers for Disease Control, would be expected greet news like these reports with their full support and resources. But something much different happens—almost invariably. 2010-08-25T19:05:47-08:00 http://www.seranogroup.org/index.php/site/entry/idsa_confirmed_as_useless/ http://www.seranogroup.org/index.php/site/entry/idsa_confirmed_as_useless/#When:22:27:16Z The IDSA reviewed their egregious guidelines for Lyme disease and found them just fine.In an expected move, the IDSA confirmed their inability to do more than offer cookbook solutions to a complex biological and medical problem crudely termed Lyme disease. Their ideology and dedication to self-interest prevents them from offering a modicum of logic or even common decency. Citizens need to remove the special privileges and funding we have granted their corrupt organization. Their subterfuge does not deserve your attention, but if you must look here. 2010-04-22T22:27:16-08:00 http://www.seranogroup.org/index.php/site/entry/under_our_skin_in_oregon/ http://www.seranogroup.org/index.php/site/entry/under_our_skin_in_oregon/#When:18:29:35Z The documentary film, Under Our Skin, had record attendance in Portland, Oregon.The Serano Group attended four screenings of the theatrical release of Under Our Skin at the the Hollywood Theatre in Portland, Oregon, September 26 and 27, 2009. A well produced documentary film can convey much in a short time, with great impact. The director, producers, and everyone involved with the film are to be commended. While staffing our table, yet again we were struck by the number and similar arc of people’s stories: health problems unresolved for years, a chance event that led them to the proper diagnosis of Lyme borreliosis, and successful treatment, usually out of state. Also, yet again we were struck by a disconnect: the CDC’s reporting of six to eighteen Lyme disease cases in Oregon each year and a movie house in Portland, Oregon on a sunny afternoon with over 250 people, most knowing several people diagnosed with Lyme disease. The world hears about the eighteen CDC Lyme disease cases in 2008 and nothing from the hundreds not meeting CDC criteria or process hurdles. We are encouraged by the people we talked to before and after the film that asked to participate in our census. Only by getting an accurate count of who has had L. borreliosis will proper diagnosis, treatment, and research be realized. Whether you have attended Under Our Skin or not, if you know anyone who has or had Lyme disease or unresolved condition possibly related, please help us get them counted. We particularly need to count those who have received treatment and improved. Our census uses a survey that most people can complete online in less than twenty minutes. (Other ways to take the survey are available.) We issue controlled invitations; just send an email message to info@seranogroup.org or click here. Those of you who provided your email addresses at the Under Our Skin showing should receive your invitation soon. Awareness of the size and severity of L. borreliosis is essential to getting the problem fixed. We appreciate your attention and help. 2009-09-28T18:29:35-08:00 http://www.seranogroup.org/index.php/site/entry/best_rebuttal_to_the_klempner_study/ http://www.seranogroup.org/index.php/site/entry/best_rebuttal_to_the_klempner_study/#When:00:26:08Z From an unassailable source… It is simply no longer possible to believe much of the clinical research that is published, or to rely on the judgment of trusted physicians or authoritative medical guidelines. I take no pleasure in this conclusion, which I reached slowly and reluctantly over my two decades as an editor of The New England Journal of Medicine. Dr. Marcia Angell, The New York Review of Books, Volume 56, Number 1. January 15, 2009 Drug Companies & Doctors: A Story of Corruption.  (Dr. Angell resigned as editor-in-chief of The New England Journal of Medicine in June, 2000. The Klempner study of a Lyme disease treatment was published in June, 2001.) Klempner joined the editorial board of The New England Journal of Medicine after Dr. Angell resigned. You can read our evaluation of Klempner’s study here. 2009-09-15T00:26:08-08:00 http://www.seranogroup.org/index.php/site/entry/great_book_on_lyme_borreliosis_published_in_1917/ http://www.seranogroup.org/index.php/site/entry/great_book_on_lyme_borreliosis_published_in_1917/#When:16:38:25Z Want to know about Lyme borreliosis? Learn everything you can about syphilis.Project Gutenberg is a wonderful thing. They take books with expired copyrights, use volunteers to convert them into electronic form, and then hope to have copies spread throughout the world. All for free. Knowledge for knowledge’s sake.    We don’t know why Audrey Longhurst, LN Yaddanapudi and the Online Distributed Proofreading Team pulled John Stokes’ book on syphilis off the shelf of Cornell University and put it into Project Gutenberg, but we are glad they did. Reading Stokes’ book, we were struck by several things:   In 1917, Stokes expected the general public to understand subtle and complex issues.   The level of discourse exceeds most of what is published today for doctors.   The parallels between Lyme borreliosis and syphilis are remarkable. 2009-06-29T16:38:25-08:00 http://www.seranogroup.org/index.php/site/entry/a_note_to_doctors_about_medical_journals/ http://www.seranogroup.org/index.php/site/entry/a_note_to_doctors_about_medical_journals/#When:16:14:27Z Blind acceptance of medical journal articles does not work any more.The first time I talked to a doctor about Lyme disease in 2001, he said, “If it is not in a medical journal, it is not real.” My immediate reaction was an obvious and literal one: there are a lot of things real that are not in medical journals. But I knew what he was saying;  he wanted his information validated and he did not want to deal with noise from unreliable sources. His entry bar was publication in a medical journal, preferably a reputable if not prestigious one. I suspect he tended to think that way before going to medical school and that tendency was reinforced once he got there. Although on that day my reaction was uneasiness with the doctor’s rigidity and close-mindedness, and despite knowing better, for the most part I used his standard for deciding what to believe about borreliosis for several years. If information was not coming from a journal indexed in PubMed or a similar source, for me it was questionable information. I was so biased that when shopping for a book on a medical subject, I generally would not buy it unless the author was an MD. 2009-06-09T16:14:27-08:00 http://www.seranogroup.org/index.php/site/entry/quotes/ http://www.seranogroup.org/index.php/site/entry/quotes/#When:21:51:46Z A few quotes from medical journals say a lot about Lyme borreliosisScience Contradicts the CDC and IDSA on Lyme Disease The CDC and IDSA advocate underdiagnosis of Lyme borreliosis, ignoring much of the available science. A few quotes, some from guideline authors themselves, show the irrationality of requiring an EM rash or positive antibody tests (ELISA or Western Blots)  for diagnosis.   "The absence of significant antibody titers to B. burgdorferi is not uncommon in Lyme disease, especially in early disease. ...Although it was initially believed that patients with neurologic Lyme disease generally have antibodies to B. burgdorferi, this may not always be the case. ...We would advise that in an endemic area, the differential diagnosis of nonspecific muscle and joint aches without rash should include Lyme disease—even in the absence of antibodies to B. burgdorferi."   Nadelman RB, Pavia CS, Magnarelli LA, Wormser GP. Isolation of Borrelia burgdorferi from the blood of seven patients with Lyme disease. Am J Med. 1990 Jan;88(1):21-6. PMID: 2294761  (Abstract)   Since coauthoring this paper, Gary Wormser has become a medical politician for the view that Lyme borreliosis is overdiagnosed. He regularly supports the opinion that antibody tests for B. burgdorferi are important, if not required, for diagnosis, contrary to his own research. Research since 1990 continues to confirm the inadequacy of common Lyme disease tests:   "Lyme borreliosis patients who have live spirochetes in body fluids have low or negative levels of borrelial antibodies in their sera.”     Tylewska-Wierzbanowska S, Chmielewski T. Limitation of serological testing for Lyme borreliosis: evaluation of ELISA and western blot in comparison with PCR and culture methods. Wien Klin Wochenschr. 2002 Jul 31;114(13-14):601-5. PMID: 12422608 (Abstract)   Similary, research has never established an EM rash as a predominant symptom:   "In our series, only 27% of children with neurologic abnormalities due to LD had a history of EM or arthritis."   Bingham PM, Galetta SL, Athreya B, Sladky J. Neurologic manifestations in children with Lyme disease. Pediatrics. 1995 Dec;96(6):1053-6. PMID: 7491220 (Abstract)   Why does the CDC endorse EM rash or antibody tests as nearly essential for Lyme disease diagnosis?                     2009-05-29T21:51:46-08:00 http://www.seranogroup.org/index.php/site/entry/idsa_secrets/ http://www.seranogroup.org/index.php/site/entry/idsa_secrets/#When:15:54:34Z The IDSA acts like they know things they don’t want to tell.Bill Moyers said, “Secrecy is the freedom tyrants dream of”.  Unless there is a really good reason, decisions should not be made behind closed doors. For a published medical study, it is particularly hard to think of a good reason for secrets. Certainly, when it comes to an infectious disease, like, say, borreliosis, everyone should be telling everyone everything they know. When they don’t, something else is going on.  So, let’s ignore the merits and minutiae of the what the authors and supporters of the onerous IDSA guidelines for Lyme disease say. We are not going argue about their illogical statements and their dubious research. Instead, let’s just take a look at how many secrets they have. And, maybe ask why, if they are on the up-and-up, they need so many.  So, in no particular order, here goes… 2009-05-03T15:54:34-08:00 http://www.seranogroup.org/index.php/site/entry/why_no_ticks/ http://www.seranogroup.org/index.php/site/entry/why_no_ticks/#When:22:01:51Z There is no good reason to think Lyme borreliosis is transmitted only by Ixodes ticks.Most people visiting our website are probably surprised we don’t talk a lot about ticks.  Most Lyme disease information sources limit their discussion to infection from a tick bite. But until more is known about other types of transmission, it is irresponsible to say, or even imply, that Borrelia burgdorferi can  be transmitted only by tick bite. The Blood Transfusion Question Even some of the most staunch Lyme disease ideologues like Gary Wormser know this:  Survival of Borrelia burgdorferi in human blood stored under blood banking conditions. Nadelman RB, Sherer C, Mack L, Pavia CS, Wormser GP. Transfusion. 1990 May;30(4):298-301. PMID: 2349627 (Note that the big shift in turning Lyme borreliosis into a hard-to-catch, easy-to-cure dogma did not swing into full force until the early 1990s. Fortunately, the National Library of Medicine keeps records of pre-dogma papers.) 2009-04-27T22:01:51-08:00 http://www.seranogroup.org/index.php/site/entry/idsa_reviews_idsa/ http://www.seranogroup.org/index.php/site/entry/idsa_reviews_idsa/#When:21:19:08Z The Serano Group sends a statement to the IDSA.We submitted a statement to the IDSA Lyme disease guideline review panel. Most borreliosis-aware readers are probably up on what’s happening, but here is a quick rundown. Basically, the Attorney General of Connecticut, Richard Blumenthal, is investigating the IDSA for possibly, just possibly, publishing their Lyme disease guidelines for their own financial gain and the convenience of infectious disease specialists who are members of their trade group. The budget of the state of Connecticut wasn’t sufficient to take on so large a battle, so the AG agreed to a compromise that lets the IDSA review their deeply flawed guidelines using IDSA members to review what other IDSA members swear to. Yes, it was a little hard for us to be optimistic about the outcome. We did not plan to submit anything. But, David Volkman, Ph.D., M.D. Emeritus Professor of Medicine and Pediatrics SUNY, Stony Brook, NY submitted a startlingly honest statement to the IDSA review panel. We had already done a fair amount of work looking into the IDSA’s bad science (only to be censored), so we thought it only right to support Dr. Volkman. Let all hope that some members of the IDSA, especially those reviewing the egregious guidelines, get up some morning and decide to acknowledge reality.  Take a look. 2009-04-13T21:19:08-08:00