The Serano Group

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.

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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.

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 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.

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.

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.

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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.

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Science 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?                    

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…

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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.)

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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.

In the scientific journal world, the best papers often get the least attention. Below is a recent example. Why aren’t we researching some seminal infectious disease issues posed here such as, why did AIDS, chronic fatigue, and Lyme disease all seem arrive at about the same time in the late 1970s and early 1980s? And, could the unfashionable spirochetes be at or near the center of this somehow?  Spirochete round bodies. Syphilis, Lyme disease & AIDS: Resurgence of “the great imitator”?; L. Margulis, A. Maniotis, J. MacAllister, J. Scythes, O. Brorson, J. Hall, W.E. Krumbein, and M.J. Chapman.  SYMBIOSIS V47, No.1, 2009.  This outstanding paper—a breath of fresh air after the thousands of Lyme borreliosis papers that seem devoted to reinforcing conventional dogma and little else—recently was published in the journal SYMBIOSIS.  There are many things we like in this paper:

 
• the Lyme politicians are properly and perfunctorily dismissed early on
 
• the reality of the microscope is emphasized
 
• the reality of who is sick and dying is acknowledged
 
• citizen scientists are included as coauthors
 
• the work of the best borreliosis researchers is included
 
• biology, rather than medical culture, predominates

Some of the academic-speak, particularly in the abstract, might discourage you, but give this paper a close reading. It deserves the time invested.

In the 1980s, U.S. government agencies made bad choices for setting Lyme disease policy. Either the big four of the medical establishment—health insurers, MD trade groups, pharmaceuticals, and hospitals—pushed the agencies, or the agencies themselves directed the policies. The lines are so blurred, it is hard to tell the driving force.

After public health officials gave the “Lyme disease” label to a mischaracterized set of Borrelia infections in the late 1970s, they soon began a campaign of error management, often finding success by formalizing their missteps. Their biggest mistake was they thought they could turn Lyme borreliosis into an easy to treat, geographically limited disease. Then they said tests were better than any facts could justify. Next, they were convinced they could control Lyme disease with a vaccine

They were appallingly wrong each time. Citizens have complained loudly, but not always effectively. Thousands more are kept ignorant of their infections and lives are left in shambles. Health care dollars are squandered as government agencies try to save face and somehow turn all this into a money-maker for private interests producing test kits and vaccines.

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Those new to Lyme disease need to cross a threshold of disbelief. A medical system that ignores well-known infections and even becomes adversarial seems unbelievable. Yet we regularly hear stories of citizens denied care simply because they would like their doctor to consider Lyme disease as a cause of their symptoms. Many have positive tests for Lyme disease. Some are denied care even for problems unrelated to Lyme disease. They are told if you ignore Lyme disease and let me ignore it, maybe I will be your doctor. Doctors’ emotional responses to this disease predominates treatment and diagnosis so greatly that common standards of reason and decency are completely trampled.

It usually takes a specific, direct patient-doctor encounter for citizens and their families to see the true nature and extent of the problem.

The ignored reality is that Borrelia infections, including Lyme disease (Lyme borreliosis), often attack the central and peripheral nervous system and can cause extreme pain, loss of motor function, cognitive decline, and psychological problems. Endocrine and immune system dysfunction are also common. Untreated, Lyme borreliosis can produce blindness, disability, and death. These symptoms and outcomes are nearly identical to syphilis, another spirochetal disease that has been studied for centuries.

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We recently reviewed the NIH web pages on Lyme disease. While not as biased as the IDSA treatment guidelines, they still overstate much and spin the interpretation of clinical trials and other research questions.

Past Lyme disease program directors at the NIH have been so extreme in their positions that they have finally gotten the federal government’s equivalent of the boot, meaning they were told to sit at their desk and do nothing. The last holder of the post, Philip J. Baker, recently moved from his government job to executive director of the American Lyme Disease Foundation, a nonprofit dedicated to promoting commercial medical establishment opinions on Lyme disease. He also just wrote a public relations piece promoting biased and unsubstantiated positions on Lyme disease. So just how were federal funds spent on Lyme research during his tenure?

We wish the new Lyme Borreliosis and Related Diseases Program Director, Joseph J. Breen, great success in increasing our understanding of borreliosis.

Two controlled trials of antibiotic treatment in patients with persistent symptoms and a history of Lyme disease, New England Journal of Medicine, 2001. 345(2):85-92.

Klempner, M. S., Hu, L. T., Evans, J., Schmid, C. H., Johnson, G. M., Trevino, R. P., Norton, D., Levy, L., Wall, D., McCall, J., Kosinski, M., Weinstein, A.  

The NIH-funded Klempner study is often cited as important to our understanding of treatment for Lyme disease. At The Serano Group, we find the study interesting mostly because it shows how easy it is to manipulate research and how readily scientists, journalists, and the public accept this type of bias uncritically. (You can read our detailed analysis of the study here, but you may want to continue reading for background.)

While the study has been discussed often since its 2001 publication, its primary failure as a piece of research is rarely mentioned: the study measured hardly anything post-treatment. The Klempner study tested a single treatment for patients with persisting Lyme disease and was unable to discern anything. The only question that remains is how hard did they try?

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